Sam and Bran and Ella and Anna

Mia

2012-01-24T10:33:00.002-08:00

Miss Mia -

For those of you that don't follow we have a friend. A little five-year old named Mia. Mia has a twin brother, Noah. Mia was diagnosed when she was 2 with the exact same diagnosis as Anna. Last winter, right before Anna was diagnosed, when Mia and Anna were both four, Mia had an early relapse. (needless to say, this story with Mia scares me, terribly.)

After her early relapse Mia needed a bone marrow transplant. Fortunately for Mia, she does have this twin brother that was able to provide her with a marrow transplant. This was a very long, difficult journey for her family - as I'm sure you can imagine.

After transplants, from what I've learned, the first 100 days are crucial. Mia was doing great after her transplant. She was weaned off her pain medication, she started eating solid foods again, played with her brother and was more back to being herself again. As Mia's family was preparing to leave the hospital and return home - Cured! - on Day 97, of 100 days, Mia was found to have relapsed with a particularly aggressive leukemia. Her parents were told they don't have a cure for her anymore.

There are many things the hospital and doctors and treatment can do and her parents have searched every avenue - Mia's best hope is to be in a clinical trial. I don't remember the exact events but she was, I believe, too healthy to be in one trial and too sick to be in another. There isn't, right now, any doctor or hospital in the country that thinks they can cure Mia. This is what her parents live with on a daily basis.

Most of this is not new news. Mia has been having quality of life chemo and her family has been out - living and having fun and doing things together. They went to Disneyland and Leavenworth and are just soaking up fun.

Last week(?) they found out she had 90% blasts in her blood. :( They changed up her medications and she was responding well to the medication, but as always, always, the side effects. Mia was hospitalized with a fever of 105.+ and they didn't know what was wrong. She's been on three antibiotics and her counts are too low so they have to hold her chemo - but if they hold her chemo her blast count goes up and if they don't hold her chemo she can't recover from the infection her body is fighting - she has no germ fighting cells left in her little body because the chemo kills them all off to fight the leukemia.

Please. Please. Please. Pray. Pray for whatever you are called - Mia, her brother, her parents, her family, her cure - whatever you pray - please pray for Mia. If you aren't the praying type - good thoughts, healing energy, positive thinking - whatever you have.

2012-01-24T10:31:00.001-08:00

Conversation with a five year old
Anna: Can I watch My Little Pony?
Bran: Sure, is it on your computer?
Anna: No!
Bran: Are you sure?
Anna: Yep. It's not on Amazon or even Netflix!!!

You know it's bad when something isn't on Amazon or even Netflix.

2012-01-24T09:14:00.003-08:00

********
Joe Paterno and Kids with Cancer
I understand that there are a lot of emotions wrapped up with everything involving Joe Paterno. I understand that people are hurt and grieving for a father or a family member - as intimates. I'm not talking about fans. I'm talking about the day to day real world impact of losing someone. That I can understand. This is related to something else I read on Sunday that I will paraphrase.

I hope that as people remember Joe Paterno they also take a few moments to remember the seven children that will die today from childhood cancer.

The seven families that are forever changed. In the three days of mourning and events in Happy Valley - Twenty-One Families will lose their child. They also need our prayers and our sadness. They've never had a chance to be amazing adults only amazing kids.
If that resonates with you:
My personal favorite:
local, dedicated to research, funds are directly to support research - not administration, not awareness or education - Research!:
http://bentownefoundation.org/home/

If you have an affinity for Penn State or Paterno:
"The Fund offsets the cost of treatment that insurance does not cover, as well as expenses that may disrupt the welfare of the child. The Fund supports the medical team that cares for the children and funds pediatric cancer research through start-up grants and the Four Diamonds Pediatric Cancer Research Institute."
http://www.thon.org/home

********
Why Research? Why not awareness and education? Funds go to families and research and not administration? WTH is she talking about?

Research funding is the best way to help out with Childhood Cancer, other than funding the daily lives of families that have had a child diagnosed. Research is where they will stop the spread of the cancers, improve the treatments, decrease side effects and cure more children. Many childhood cancers are found only in children and young adults which slows the efforts to cure the disease and find treatment.

Attempts to detect childhood cancers at an earlier stage, when the disease would react more favorably to treatment, have largely failed. Young patients often have a more advanced stage of cancer when first diagnosed. (Approximately 20% of adults with cancer show evidence the disease has spread, yet almost 80% of children show that the cancer has spread to distant sites at the time of diagnosis).(FDF)

Cancers in adults and children often act and respond differently. For instance, pediatric cancers are frequently more aggressive and rapidly progressive than many of the more indolent adult cancers. (MCT)

Cancer treatments like surgery, radiation therapy, chemotherapy, or bone marrow transplant, kill cells that grow quickly, such as cancer cells. But in a child, healthy cells in the bone, brain, and other organs, are growing fast, too. Treatment can damage these cells and keep them from growing and developing the way they should. (ACS)

Children and adults are affected by different types of cancers. Even the cancers that are “common” to both groups are frequently different on both phenotypic and molecular levels. (MCT)

The cause of most childhood cancers are unknown and at present, cannot be prevented. (Most adult cancers result from lifestyle factors such as smoking, diet, occupation, and other exposure to cancer-causing agents). (FDF)

Several childhood cancers continue to have a very poor prognosis, including: brain stem tumors, metastatic sarcomas, relapsed acute lymphoblastic leukemia, and relapsed non-Hodgkin's lymphoma.

Childhood cancers are the #1 disease killer of children in the U.S. - more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined. This is why we need research funding. It isn't just about curing the kids and young adults - it is also about curing them AND leaving them able to live productive lives as a result; lives that aren't limited and bound by lifelong side effects that the cure has brought to them.

The research needs to be different and the cures and treatment need to be different because they are different diseases - even if they have the same name. ALL in adults and kids - not the same disease and statistically has better cure rates in children. Other kinds of cancers, not so much slanted in the kids' direction.

Here is a great link that explains a tiny bit about the differences and why adult treatments don't cure kids' cancers. :(
http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/292

Several of the major cancer organizations do a great job of spreading awareness and education to the general public. Some of these organizations use a lot of children in their advertising but very, very little, minute amounts, of their funding goes into pediatric cancer research. There are a lot of reasons for lack of research on pediatric treatments but it does generally come down to funding.

I feel as if I'm already too wandering and may be too educational for most people to continue reading - there's no drama and there's nothing terribly exciting and interesting so I'll quit for today. It is 'exciting' and interesting and dramatic for me and my family - my daughter. Her life literally depends on the research that has been, and is being done into pediatric cancers. Very Helpless place to be.

2011-11-16T21:13:00.002-08:00

I'm just so tired.

Tired of being cranky and sad and worried. Tired of worrying about my child dying. Tired of worrying about how to tell her that other kids die from the exact thing she has. Tired of having to live day by day by day and not being able to make plans - or to make plans with the knowledge that nothing is set - everything is tentative. I hate living in fear and I hate that I am crying every single day and I hate that I can't let go of the fear that Anna is going to relapse. I hate that in cancer - as in every.single.freaking.thing! that other Mothers do there is, even here - my kid's cancer is worse than your kid's cancer. Or that tumors somehow aren't as bad as blood cancers or that tumor cancers are so much worse or that I feel the need to hole up and not see anyone related to cancer or read about anything related to cancer because I just can't calm down. Or that relapse is constantly on my mind.

Mostly - I'm just tired. tired of bad news for other kids and tired of dealing with my kids and feeling guilty - so guilty. Guilty for what they are missing, guilty for waht they have to endure, guilty for even getting frustrated or upset with Anna. I feel like there is rarely any rationale thought anymore. Debatable about the anymore, depending on perspective I guess. ;)

I think this is enough venting for one day - do you suppose that if I cry or vent or rage enough in a two day span, in multiple venues, to multiple people, I might feel better? Just getting it all out at once? I certainly hope so!

2011-11-07T20:37:00.002-08:00

It is kind of weird that the bad stuff from this cancer stuff gets funneled over to here - this was originally a blog to keep friends and family updated with our lives and cute pictures of the girls - a fun place, maybe some craft or baking projects, scrapbooking pages, maybe.

things change and I guess, for right now, this blog is serving the purpose of being the repository of things that I deem too sad or negative for Anna's CB. I think, I couldjust delete the entries, but it doesn't seem very honest, very truthful. There is SO MUCH good, but also bad and sad. It seems disingenuous to only write the good and I don't want the reality to be lost in a sweet candy coating. Because honestly, there is really only so much sweetness that comes with cancer. So, if you're coming from the CB or just reading:

I don't like to write about the kids who have lost their fight. Every week in October seemed to bring another one or two who succumbed. Brutal to live with that reality. Hard to maintain focus and a positive outlook. Oh, and also, because I know it is inevitable that some day one of the kids Anna has met will lose their battle. Poor babies. I don't know how to have that conversation with Anna - to she and Ella, cancer is very similar to a really bad flu.they don't know what can happen to some people with cancer and I don't want them to know and be living in fear. Ella even told us a week or so ago (did I already mention this here?), "I don't get what the big deal about cancer is?" That is great. That is amazing. That is awesome. I don't want her to know the big deal about cancer. It's not fair that they have to know - any of them.

This past week, reading a Mom's updates as her son slipped away and his body quit working - after six weeks in ICU and him fading/recovering/fading/recovering - but never all the way. That was gut-wrenching. She was incredibly, brutally honest and it was horrible and all you want to do is offer her somewords of comfort but really, there is no comfort, is there? So, the really shitty part is, you kind of have to put those kids and families out of your head for a lot of the time and not think about them - because to think about them is to face up to the reality of what **could** happen. not likely, but it could happen.

It is best not to dwell in those shadows and to really, really live in today and take joy in the small things - and large things. And to be thankful for all the bountiful blessings we do have. Because, honestly, selfishly, it is hard to live and be with the parents in their sadness, grief, despair...so, it is easiest for me to just avoid thinking about them for the most part.

2011-10-19T09:55:00.002-07:00

This, there are so many people out there in Kids' Cancerville - the residents are so much more eloquent in their thoughts than I - I constantly reading about some other parent/child/family's journey and the words are the words I wish I had concieved in writing about ours', Sam's and Bran's and Ella's and Anna's - because while we are all in it together, the way we get through as individuals and as a family and in our relationships as twos and threes is so unique. I wish I could have the words in my heart and fingers to write down the full feelings and emotions. At the same time, I understand logically that the words don't contain the full meaning and import that they contain for a family that hasn't been actively living the journey - the people on the sidelines, however intimately involved, don't know the full extent and can't. I can't understand the other families that we know - as the journey has some of the same pit stops and sightseeing, and while the trip may be similar it isn't identical and the destination isn't the same for all of us. (that is like the longest three sentences and run-ons and non-sentences ever!)

Anyway, all that being said; I love the way this Dad tries to explain himself and he puts into words what I think all of us parents are living/breathing/thinking/not-thinking about. The world where you kind of just have to keep to yourself. I remember when Anna was first diagnosed and I remember thinking that a lot of the parents and families were so isolated and almost, but not at all, unfriendly.

What I realize now is what Sam calls the 'tunnel'. We have to keep going down our tunnel, we keep everything we need to get through the day-to-day in sight in front of us in our tunnel. When we do that everything seems great and fine and that everyhthing is going to work out for everyone. The problem arises when you peek out of the tunnel, try to look up or below and maybe try to see to the end. That's when everything falls apart and is so incredibly overwhelming that you have to, as quickly as possible, tuck your head back down and retreat. The looking up means seeing the other friends and families and where their journeys are headed, where their journeys are ending or changing direction. That's no good. Either positively or negatively - It's kind of like Dory, "Keep swimming. Just keep swimming." If we stop we sink. That isn't good for anyone. ;) Sinking would be very bad. So, keep swimming and stay in the tunnel and hope and Pray that we can come out the other side with families and friends and finances and relationships intact.

The fact is that you have to insulate yourself (at least I do) so that I can continue on being the best Mom and Wife I can at this time - it is SO easy to cry everyday (and I usually do) not because of Anna and our situation. While I may wish that this hasn't happened to Anna - my fear and sadness aren't usually for us or for her - but for the families that are losing or have lost. The families that are faced with living the unthinkable - and there are stories and kids every day that make me cry and as Anna says, "sad tears, not happy tears." I lie, a lot, and tell her they are happy tears.

The salient points I use ever so many words to express:

Anyway, (again), here is what I've copied from Will's piece:

It is important to not get lost in that grief road trip.
It is important not to waste any time worrying about a reality that does not
exist.
If it happens I'll have forever to deal with it so you have to force your mind
not to go there.

and a more full version of the text from his post:
Grief paella
Grief is not something that I can experience while simultaneously being a good dad.

If, for example, I was an unmarried childless person I could simply dive right into grief with both feet - come to grips with it - and integrate my new reality into a new functional way of living and then move on. However, when you have a family and young children I've discovered that trying to contend with grief is much harder to do and as a result finding a new functional model for your new reality is a much longer process that can drag on for longer than you'd like. You can't exactly sit on the couch all weekend reading trashy magazines, eating bon bons, and using up tissue boxes. There is hockey and soccer and play dates and three kids who I desperately want to be happy.

I found myself trapped in a seemingly endless cycle of "grief control" as a result of all the children dying whose lives I have followed online and in the clinics. This non-stop grief is precisely why I went 'off' the neuroblastoma parent email list and why I also stopped adding any new kids to the list of kiddos I follow. Now that almost all of them are gone I very rarely am forced to take a bite of my grief paella but this weekend I was reminded of just how poisonous it is - and of all of the terrible roads it wants to take you down.

If it is one of the countless NB kids that dies - or even the family dog - the back beat to the grief that thrums like a maniacal thought pulsing through my brain is how crippling this would all be if this happened to Will.

It is important to not get lost in that grief road trip.
It is important not to waste any time worrying about a reality that does not exist.
If it happens I'll have forever to deal with it so you have to force your mind not to go there.

2011-10-14T21:24:00.000-07:00

http://www.buffalonews.com/life/article577581.ece

2011-10-13T20:42:00.004-07:00

Why we need more money and funding for Childhood Cancer Research.

Future Cancer Statistics for Childhood Cancer Survivors

What this means, in a nutshell: The most frequent subsequent malignancies in pediatric cancer survivors are skin cancers.

Basically, our Anna has an even greater risk of getting a relapse of her leukemia, other forms of cancers, skin cancers - all because she has had this leukemia. Add into this the skin and former-hopefully-again-someday-gingerness of my girl - it isn't the most positive picture for her lifetime. The beauty is that there are people that aren't all about the pink or the teal or the any other colors and funding education. There are groups that fund, specifically fund, pediatric cancer research.

I have been doing my own research lately - checking up on corporations and charities and who funds what and how. I'm trying my best to funnel our supporters to organizations that fund pediatric cancer research. There are a lot of organizations that fund education and awareness and especially research and while all research and education are important, and it is horrible that anyone has to suffer cancer - the funding and treatment is over 95% directed toward adult cancers.

The problem: there isn't a lot of money to go around and there is not a lot of money to be made by researching pediatric cancer and developing medicines for them. Now, those kids grow up and fight cancer for second and third times and there are more medications for them and more money, more research, more funding... Adult cancer gets the money and the irony is - adult cancer treatments tend to not help children. Pediatric cancer treatment and research does help inform and improve adult cancer treatment. Think of this; out of all the good works other organizations do - no one, especially not us, is complaining about the funding or research that saves lives - but, the National Cancer Institute spends less than three percent of it's budget on pediatric cancer research. The Leukemia and Lymphoma society annually spends 2-3% of their budget on pediatric research, almost half their budget goes to research, but not to help kids.

This is my new soap box. The numbers and statistics swim in my head. I can recite them. I know the facts and the realities and the numbers - it all comes down to numbers. We don't worry about what will happen to Anna in the future - well, some sort of nebulous worry, but nothing specific. I think we more work toward enjoying our time and when, if something does happen as she's an older teen or an adult we'll work toward it then.

I do know that girly is going to be slathered in sunscreen from top to bottom for as long as I have the care and keeping of her! There is a video attached - watch the video, all the way to the end, you have to make it to the end. You may want to slather your kiddo in sunscreen too!
Seattle Mama Doc

SO, what can YOU do?
Here are two organizations that specifically fund Pediatric Cancer Research:

The first is the Ben Towne Foundation: "Our foundation is unique in that our costs are fully supported. This means that every gift to the Ben Towne Pediatric Cancer Research Foundation right now is a donation that goes 100% toward research. And from research will come cures."

The second is Friends for Life: "The Hope is in the Research!" Friends for Life is a Seattle Children's Hospital Guild that supports Pediatric Oncology Research.

2011-09-26T13:20:00.001-07:00

"She looks good." "She's looking good." "Wow, she looks great!" And she does and I *know*, intellectually, I know, this is meant to be supportive and uplifting. Some days it doesn't, it isn't. It almost is like hearing people say she's better or she's done or it can't be that bad - as if it takes away the reality of the day to day battle she's fighting. Just because she looks good and is feeling good - at this moment -
This doesn't take into account the pain she fights through pretty much every day - the pain to walk, step, climb stairs, even to eat. Her jaw hurts, her chin hurts, it hurts to open and close her mouth. Her head hurts, the muscles in her legs make it painful to even walk much less play but she forges ahead. Her attitude and pure joy in life, and in being able to be involved in her life again take over and make the pain secondary until she's back home. Saying, "She looks great," almost discounts everything else she's going through. The fact that she's up at 12, 1, 2, 3, 4, 5 am - some point during the night throwing up, the insomnia, the throwing up outside the school doors, wiping her mouth off and heading into the classroom with her friends - the daily.hourly,minutebyminute battle she's fighting.
She never ever dwells and never even really complains but some days we send her to school on narcotic pain meds with tiny pupils so she can get through the day. Again, this morning she was washing her hands and reciting the alphabet to make sure she washed long enough and she can no longer recite the full alphabet - every time there are pieces missing - chunks of the alphabet gone. Not because she didn't know it, but because she no longer knows it. She can't remember it anymore. She soldiers on blissfully unaware that she's just skipped five letters here, three letters there. I know. I know she used to be able to do it. I know she used to be dedicated and motivated to work and to learn to read. Now she has no patience. Zero. She is in tears at the most minute things - she was the one I could count on to calm down, Ella was the one that was the drama queen - they've kind of switched roles. Who would have ever thought that Ella would be the more emotionally stable one? ;) Anna's just extremely volatile and her emotions are always just at the edge of the boiling point. This isn't what people see and it isn't what she lets people see -until she's had enough and can't put up her facade anymore and has a melt-down. Last week she skipped school and I kind of wanted to force her to go but then decided against it. Anna then slept for the two and a half hours she would have been at school. :(
There is no reserve, nothing to call on if she is tired or has had a late night - there's nothing there. Every single day she runs herself down to empty and hopefully has enough to make it through the next day. Makes me think of the spoon analogy - she has her spoons for the day and uses them all up to go to school and be new self. So, while I completely understand that people are offering support when Anna is looking well, sometimes I just can't take it in the spirit it is intended.
I think it is also hard these days because Anna IS, absolutely IS, in a good place with her treatment. The pain and the nausea and the insomnia and the sleepiness are all pretty mild comparatively to what she's had adn to what is to come.
The worst part is yet to come and I can't help but look forward and try to plan and then it makes me feel sad - and this is totally NOT at all about Anna but soley about me as the Mom, that it is hard to plan. Hard to move forward, knowing what is ahead. Then, what makes it even harder is that the people we thought we could count on, that would be supportive aren't so much. Yet, we are so incredibly blessed because there are so many people that are supportive and take our calls any day and time and offer help and support in an instant. The quick texts/emails/calls/drop-bys/grocery runs/ headbands/hats/scarves/notes/cards - it all helps keep you going and to remember that we aren't alone. We don't have to do everything alone. It is kind of a bizzaro cancer world where the former friends and neighbors and acquaintances become the close friends and the helpers and the savers. I think it leaves you (well, at least me) feeling tumbled around even more in the midst of all this because in addition to finding your way through new normal you also have to navigate to new friendships that are supportive and helpful. Even when there isn't time to be a good friend in return and the people you thought would be helpful and supportive just have to be left by the wayside because there is no energy to invest in people that aren't wanting to be there. Good theory for life in general - made abundantly clear through the window of this journey.
So, while we take joy in the every day moments we have with the girls and are hopeful for our future - sometimes it is tainted when one of us is having a blue day. We are still getting used to the living day by day that the leukemia requires of us. There is no tumor to be removed or that radiation can take away - there is just this disease, in her blood, throughout her entire body. to that end this weekend, while I absolutely am having fits with a messy house and not taking care of my business in the home (I've had a painful tooth, serious pain meds and then a root canal this past week) on Saturday Sam convinced me and I was SO grateful! that he did to take the girls away. We went to Mount St. Helens for the day, took a leisurely drive after soccer. Stopped wherever we wanted, Sam donated blood at a Rally Blood Drive partially sponsored by Friends of Mia in Olympia, Ella took pictures, they loved seeing the volcano, watched the movies at the visitor center, hiked, took in nature, appreciated where we were. It was Amazing! The girls had a great time -neither one complained about the drive - they were happy and cheerful and it was great being more normal. It was a lot like before we had Ella and Anna and would go away for the day or the weekend on the spur of the moment. We had actually had approval to go somewhere this weekend, just make sure we took note of the closest 'good, appropriate' hospitals. We debated Leavenworth but with Anna being so nauseaus and me being nauseas with the pain meds - we both normally are car sick on that drive. It is So Hard to remember we made that drive about once a month last summer and fall - a lifetime ago - and Anna and I would just try to sleep through the really curvy parts and not throw up. So, then we decided we'd go to Vancouver, B.C., unfortunately Ella's passport expired earlier this year and I couldn't quickly put my hands on her birth certificate. that's how we ended up at St. Helens.
Skipped church b/c every one slept in late - feels bad missing it when we are actually able to go. Last weekend we went for the first time since Anna's diagnosis, I think it was the fourth or fifth time total we've even been able to go since January. Anna loved it, we were going to leave before it ended but she really wanted to stay. Sam and I were very scared to have her there during Communion but let it be her choice. Again, so grateful that we let the girls make some of their own decisions. Anna loved it, and Ella especially loved it. I looked over at her as she was getting ready to partake and she gave me the biggest, hugest smile I've seen on her in months. It was absolutely fabulous and just reinforces the point that she needs the normalcy back in her life also.
More to say than I realized today.

Got this from a fellow ALL Mom

2011-09-22T09:22:00.003-07:00

evidently she's a bit fed up too. ;)

*September* is National CHILDHOOD CANCER AWARENESS MONTH. How many of you Mom's fighting for awareness and funding for breast cancer know that? How many of you know that: Childhood cancer is the number one cause of death from disease for our children, killing more every year than asthma, diabetes, cystic fibrosis, congenital anomalies and pediatric AIDs COMBINED!

According to Helen Jonsen, Forbes.com senior editor "the funding for pediatric cancer clinical trials has gone down every year since 2003, and is currently $26.4 million. By comparison, NCI funding for AIDS research was $254 million in 2006; funding for breast cancer topped $584 million the same year."

And BTW, that $26.4 million is for ALL types of childhood cancer combined. Childhood Cancers differ from adults, do not fool yourself into thinking adult research helps kids. It DOESN'T. But in yet another entirely unfair and unbalanced stroke of luck - pediatric cancer research *has* helped adults.

I realize all of you playing the breast cancer game, buying pink merchandise, and doing what you can to support breast cancer awareness are doing so with the best of intentions. Meanwhile though...children are DYING. Children who never got the chance to grow up to *be* an adult with cancer. Children who were robbed of their childhoods.

And on the off chance you're still reading, thinking "my mom/sister/friend went through chemo for breast cancer, it was awful." You're right, I'm sure it was - for the 3/6/9 months they endured it. Ask me about the 27 months of daily chemo my toddler had to take. Or about how many amputee children I know. Better yet, ask me about how many funerals for children I've attended. My friend's 4yo son was buried with full fireman honors...trust me, that will change you.

All I'm asking is that a) please allow October to stand for breast cancer - allow the children to have a few weeks a year in September to try to be heard. And b) please take a moment to really process that if cancer is hard for an adult...imagine how unimaginably horrible it is for a child. Can you parents out there possibly place yourselves in our shoes for just one minute?

- Alicia - proud mom to Warrior Avalon - leukemia survivor. She's one of the lucky ones, she merely has life-long debilitating damage from chemo - but at least she's here...

Again, not as a hand-slapping, woe is me type post - but a personal perspective on perspective. It is hard living every.single.day in the moment knowing that literally - at any minute you could be back at the hospital for who knows how long of a stay. The always on guard and living in constant fear, well, not even fear, but awareness, the hyper-vigilance, is incredibly wearing and makes you tired. Tired for daily life of petty stuff and stupid games.

Seriously?

2011-09-21T11:32:00.002-07:00

Seriously? Seriously. Really?

I am not all normally handslappy and upset over silly stuff but today it is just pissing me off. I go to my FB page and post after post after post of people whining about the changes on FB.

REALLY!?!?!? Really? This is worthwhile enough to have people upset? Honestly? They changed the layout of your social media?!?!? I've seen friends saying they are cancelling their accounts over this - fine. We all spend too much time there anyway - but this

the changing outline look design format whatever is really worthwhile posting and complaining about?

WHAT!??!?! OMG! I *WISH* this was worthwhile for me to complain about it - because here is the seriously handslappy part - if this is enough to make you complain - you have a pretty freakin awesome amazing life! Not that my life oh woe is me, it is so much harder, that's not what I'm saying - this is a pretty lame and first world problem - I just can't believe the upset. I have a whole series of things to be upset and worried about and this didn't even hit my radar. I want a day where the thing that motivates me to update my status, and is the thing I choose to complain about at that moment, is stupid Facebook.

Gah. I am so incensed. I understand that people engage in hyperbole and that no one is probably really that upset over it but is like a slap in the face to be confronted with so much negativity for something so meaningless.

FORTY-SIX kids
- A DAY!

are diagnosed with cancer - this makes me upset. My 5 yo may get cataracts after they radiate her brain. This makes me upset. A precious sweet little girl is fighting her third bout with cancer with no known treatment to cure her - this. this. makes me upset. guess what? Her mom hasn't said a word on her page about the new changes. BECAUSE it doesn't matter! I suppose the case could be made that if it doesn't matter then why the post here and the answer is because I feel like it and it is my blog.

I feel blessed and lucky every single day to still have my child with me and that she will be cured and the ONLY after affects of this will be post-chemo rashes as her immune system gets rid of the last of the chemo, cataracts, bald spots, higher percentages of tumors and further cancers in her life, especially brain tumors, horrible rotten adult teeth, decreased cognition, hormone imbalances as an adult, possible infertility... I can continue on. I try not to worry about any of this too much. Facebook, not a blip.

I am grateful that this issue is the worst thing anyone has to write about today - that is awesome and there is so much to thank God for! I just needed a little vent and sometimes, sometimes I think a little perspective is a good thing.

Good Times and Bald Times

2011-09-14T09:14:00.001-07:00

http://www.youtube.com/playlist?list=PLF0EBE7A44B2A27BC&feature=viewall

2011-09-11T21:30:00.003-07:00

and clearly, yet again, there is a message I need to have and pay attention to and hear.

Browsing through a friend's blog entries. This pops up, I scroll past it, usually I read the verses but do not dwell on them. Tonight I had to re-read this about six times, for some reason the page kept scrolling back to it while I was trying to scroll away. So, thanks MSB for unknowingly, months ago, helping me to re-center and re-focus today.

Therefore do not worry about tomorrow, for tomorrow will worry about itself.
Each day has enough trouble of its own. ~Matthew 6:31-34

So, clearly, the timing is not mine but the message is all for me.

Fear, fear and more fear

2011-09-11T21:03:00.002-07:00

Currently I'm freaking out b/c I'm afraid Anna's leukemia is back. Logically, I know it most likely is not, especially since she just finished three weeks ago her nasty course of chemo - but her late on-set symptoms have me so terrified. I'm back to not being able to sleep. She's getting headaches (again), not eating (again), nausea (again) and leg pain (again) - Every.Single.One. of these symptoms she had when she was initially diagnosed.

And, while logically I know that chemo can cause each of these symptoms, as do low blood counts cause issues - I can't relax. It is so incredibly frightening - hard to relax, hard to sleep, hard to even concentrate on the day to day. On Thursday she had a visit with a doctor we've met once before - she just kind of blew it off b/c obviously she's had a rough course of chemo and is still recovering - except that, as the Mom, I don't remember it still affecting her this many weeks post-treatment and there is too much bad and sad stuff going on in cancer-ville - along witht he unknown, to take anything for granted. On Friday she was scheduled to have IT chemo and they'd test her spinal fluid -since her counts were too low it is rescheduled for this Friday. I am anxious to get the results but I am also terrified. Beyond terrified. So terrified that I turned down three invitations for Saturday night. I just can't be good company and I can't calm down. I can't do really anything but worry.

There are a couple of groups for parents of kids with cancer - well, more than a couple. I should more accurately say a couple that I have been invited to join. One of them I had to opt out - I can't be with that group. The constant questioning, the constant fear and non-reassurance, the fact that it seems as if most of the parents are dealing with children in relapse. Too scary and not nearly enough positive for me to want to be a part of and continue and possibly contribute. I was talking to our social worker at the hospital the other day about insurance and money and paying and everything related to the changes in insurance. He, as usual, checked in with me personally. He's so good and so sweet and I just love him - not like hot sexy love - but love as in very much appreciate and care about him.

Anyway - his point to me is, I'm seeing the parents and kids that are still in treatment or have relapsed. Hard because we still have several months to go - but I'm constantly seeing kids finish their treatment and be able to be done. Head to Maintenance, head back to Alaska or Port Orchard or Montana or wherever they've come from and we are still there. With, of course, the understanding that I have no idea when some of these kids started treatment and also - just as Anna's treatment is only Anna's treatment theirs is onlytheirs. Even the same diagnosis is different treatments for different kids. Okay - so he totally didn't say all of this like this - But, he did say that I am only seeing the two out of ten kids. I'm not seeing the 8 out of 10 kids that are gone. So, it is easier to focus on what I'm seeing and that feeds the fear.

I just have to believe that all the extra treatment and radiation that Anna will be receiving will cure her permanently and this will be a blip in our lives - three and a half years of hard work and pain and fear and hospital visits but then life moves forward and we move forward and this is all in the past.

We also discussed how scary it is to be considering heading into Maintenance therapy. Really. As insane as it sounds - the thought is terrifying. Maintenance consists of one visit a month for two years and a spinal every three months for two years. Of course checking on counts and watching for fevers and anything else but the plan in once a month! Once a month. You know there are several weeks when we are in clinic - not even the hospital, for 5, 6, 7, 8 days in a row. The new new normal expectation is that we would be here for one day out of 30. Can't begin to wrap my brain around that - and as exciting as it obviously is, brings a new set of fears. No more safety net. He told me that if he'd told me in the beginning that I would feel this fear I wouldn't have believed him. Totally true. How could I possibly be scared to not be here and not be surrounded by cancer and everything it entails - well, now I know a whole lot more and I have an entirely new education and perspective to be afraid from (shhh, I need to end with the preposition)

Lately I've been branching out and reading about other peoples' ordeals with cancer for their kids. It is incredibly affirming and generally hopeful and uplifting. It is also scary and tiring and draining but wonderful to know that other parents feel the same way at times. The feelings aren't just mine but shared - almost a justification. Totally not needed, but nice still the same. There are portions of their writings that I wish I could copy verbatim but as they are their words for their journeys I need to find the right words to write about our journey.

2011-08-26T22:54:00.004-07:00

Unexpected Connections in the Universe - or Why Cancer Can Slap You in the Face

There are these really cool picture frames that are becoming more and more popular. They are curved and fluid and quite pretty and there is a frame I have pretty much been coveting since I saw it. They are made by a company called Organic Blooms and then another series of frames by an Etsy shop, The Orange Blossom Shop. I can order the frame in the size and color I want from Etsy, the only problem is that it isn't the frame I want - don't get me wrong, I'd be pretty happy with any of the frames from OBS... But, I want the frame from Organic Blooms. I love it. I've loved it since the first day I saw it. Totally petty and first world - I get it. I'm on my way to a point - you just have to read this stuff first.

I finally get to the revamped/new website with the contact info, however, they don't sell to mere peons. They only sell to professional photographers. On the old website there is no information about how to contact anyone to buy them from. I email them for information and they email me back saying to use the tab for locate a seller. Finally realize (again) there are two different sites and the new site has the tab but not the old site.

I get to the tab, get five names and pick the first one, she's 1.2 miles from our house, check out her website, like her pics but don't find any information on the frames. I decide I can email her to ask if she sells the frames and decide to check out her about me page. She talks about her life a bit, her husband, her family, she has five sons. Then - BAM!!! - pay attention! - Cancer Freaking Sucks! - She now has four sons because her oldest son was diagnosed at age 4 and died at age 6 from his cancer. WTF?!?!?! How do I go from being excited at finding a way to possibly get this thing that I really covet more than I should to bawling my eyes out. Then I couldn't stop reading and reading and crying and crying. Her son passed away six years ago and the posts aren't very often, but they are so well-written and so poignant and she just broke my heart time and time again. :(

So - eventually I did manage to email her, brief note about our story, what I'm looking for...she replied and I made her cry too. She emailed me back. She thought I wanted her to photograph Anna. :( She said she would have done it but it would really hard and she didn't want to so she was quite glad I hadn't actually asked. So we basically were slapped in the face with our kids and cancer. Made for a bit of a rough afternoon - good after all of it - but a rough way to get there.

Oh yeah, and she's going to special order my frame. :)

2011-06-03T14:07:00.002-07:00

I love her. I love her I love her I love her. I do, I really truly 100% with everything I have and am, I love and adore and cherish her. I am getting a little bit tired of her.

She either wants me to be in the room with her and talking to her and watching her show or playing her game and/or playing with her or she needs to know where I am and what I'm doing. Literally today I have been in the same room with her. Three times I left the room she was in - while she was watching TV! The first time she was watching and called to me after 36 seconds (yes, I counted), the second time she called to me after seven seconds and the third it was 21 seconds. So - I have had about one minute today without being in the same room with Anna and her talking to me. I even told her I had to go to the bathroom, when I didn't need to, and I would be out in a few minutes. That didn't even work!!! She talked to me the entire time I was in the bathroom. Asking me question after question after question- argh.

Then, I feel this terrible push/pull because she's feeling great and healthy and she's soooo smart and so funny and this amazing sense of humor and that I should be forever grateful to have these days with her just like this. I need to just enjoy it and relax and spend as much time as possible with her because I never know what will happen or what tomorrow may bring and then I have this realization thtat I can't live in fear of what may or may not happen to herI neede to just live life and that it is fine that I don't enjoy spending 24/7 with a chattering 4 yo, regardless of how funny and smart and sassy sheis. But then I don't want to waste any of our time - I feel the need to claim it and enjoy it and have every day be a good day and just enjoy her. Then there is more reality in that the kitchen DOES need to be cleaned. The fridge does need cleaned - we have a 150 lb shedding dog and I NEED to vaccuum and it is just terribly hard. I want ot enjoy her and our time and I want to spend time with her and not be resentful that I HAVE to do it - but really, honestly, I'd just love a little time without her which is kind of horrible to say because she is surely, without ad oubt the most cheerful optimistic person in the entire family.

I don't want something terrible to happen in the next couple of years adn then think that I should have just not worreid about vaccuming or cleaning the kitchen or doing laundry and I should have just played mermaids and pollies and whatever more often. I hate this feeling.

I do think that pretty much anyone would feel that way after being with one person all day every day. I would love to go to the gym or get my hair done or whatever - the difference in this and my normal stay at home-ness is that when they were little, toddlers and babies and pre-schoolers I could take them to the store or to the park or the zoo or the Science Center or wherever. I could take them to McDonald's play place for an hour on a rainy day. I don't have those outlets anymore. I can't take her to the park or the store and most definitely NOT a play area! Any one of those places could have germs that could land her in the hospital for a short or an extended period of time or even worse. Her body has no way to fight it and while I would be more willing to take chances probably if it were my own health in question there is no possible way I am going to do anything that may risk her health!

Sam tells me that I should go when he gets home from work, get out, get away. Spend some time alone just doing what I want. The problem with this is - I spend so little time with Sam and Ella anyway - spending more time away seems almost torture. I like spending time with all of the people in my little family, maybe just not so much of it with one special little person. Plus, I do need an effort to spend time with Ella alone and time to spend with Sam alone. It can't be all just about Anna, can it? So, then, I feel worse because maybe it should be all just about Anna and the rest of us need to man up and deal - but really, how do you expect a 6 yo to just deal? So staying home is hard and leaving is hard and it is all hard hard hard and I'm trying my absolute very best.

That's when I get annoyed with Anna b/c she just won't back off. That's really what I want to say to her - Back Off! Give me a minute! But then, she'd start crying and apologize and then I'd have to apolgize and cuddle and then we'd be even in more close contact than before I snapped and I still wouldn't get my minute without any touching or talking. She even comes into our bed around 10 pm and midnight. Doesn't matter if she's asleep or awake, she needs to come into our room a couple of times a night for a cuddle. Part of the reason we had to switch up who spends every night at the hospital (besides the regression and melting down of Ella) is because Anna literally won't sleep and doesn't let me sleep. She wakes herself up adn looks for me and not just looks for me, wakes me up to watch her sleep. That isn't an exaggeration or a joke - she wakes up then wakes me up to watch her while she's sleeping. So, she doesn't sleep as well because she has to keep an eye on me and I don't sleep as well. At least if Sam spends the night she lets him sleep and she's not up all not checking on him, they are only up when the nurses are in for vitals and meds and to go potty.

It is also very hard because these days both girls are extremely, and I do mean extremely! clingy! Twice in the past week Ella has cried when we are someplace in public and she can't see me. Both times she was in the car and I was out of the car, next to the car, but evidently someplace she couldn't see me. At one point she unbuckled her carseat and moved to where she could watch me. Anna cries if we are out and she can't see me. Yesterday, maybe today, I was getting out of the car and Anna was left to get out on her own (we like to encourage her independence when she's feeling well) and she started crying - because she thought I'd left her outside alone. They won't leave the house to go play unless I watch them - even in our own yard. They want my eyes on them all.the.time. It is adorable and endearing but also incredibly stifling and frustrating at the same time. I know they need the reassurance of Sam, and especially me, that we are there for them and that we will take care of them but it is also suffocating.

2011-06-01T22:07:00.003-07:00

Cancer sucks.

It is hard and it is ruthless and brutal and devastating and incredibly unfair.

Worse than cancer - little kids dying from cancer.

Being at a Children's Hospital with a fantastic cancer program is incredibly reassuring and as I was speaking to someone about today; a little community. We are all members of this elite community - it feels so different for kids to have cancer than adults and that may be just because it is my child that has cancer so I have to feel differently about it. I don't know.

I do know that I need this community and I need the reassurance and I need to know them. I need to see the kids that get better and finish their treatment and go on to bigger and better things. I need them to have their lines removed and watch their hair grow back and learn their names and their stories and enjoy them being able to be kids while they are in this place. I need all of this because it has to happen - it has to help block the utter and complete terror and fear and the unimaginable pain. I need to know they get better and live. It is too heartbreaking when they don't. We didn't even know them - the family or even the little boy and his family. We met them briefly, mostly in passing and now we know of their lives and their pain and the sudden shocking realization that he wouldn't survive. I can't even begin to imagine the feeling of having no hope. Seriously. No hope. How must that feel? I pray to God that I never have to find out - that I never have to experience the terror and the weight of hopelessness. There is nothing left to do. How dark adn bleak and immensely frightening - not words to express the depth of the darkness or the anguish his mother must feel.

So, I need to be around the kids and the parents and laugh and giggle and we need to be able to trade stories about treatments and lines and side effects and transplants and tumors and blood cancers and compare and note counts. I need to be able to speak to someone that understands the language intimately and that, ultimately, has the exact same hope that we do. I love that I have other mothers and their children to help us navigate through this crazy community. I need to have them and cry with them and laugh with them and sit quietly with them - we need each other and we need the hope that each other family can provide. It is strange to be bonded with strangers. I am so grateful for our cancer friends and I know some of them will be forever friends and some will be for right now friends and it is all important and necessary and worthwhile.

We need each other to help keep out the darkness and be lights for one another. For my other lights, big and small, I know I will be eternally thankful.

2011-05-29T12:13:00.002-07:00

Ella's comments for the blog today, "Nah."

I think we're all feeling a bit blah - but nice to be home. :)

2011-05-17T09:43:00.002-07:00

Had a hard time updating this page - Blogger was down for a couple of days and then I was somehow freakishly logged into someone else's blog that had shown us something and couldn't figure out how to clear it so I could log in here.

Anyway...

We got official word yesterday that Anna's bone marrow aspirate from last week came back with 0.00% cancer!!!

So thrilled. It seems as if it has taken forever - which I totally know isn't true but it has taken much longer than expected when she was initially diagnosed (stressful!).

We had celebratory ice cream and more ice cream and singing "Happy no cancer day to you!" and the girls totally taking advantage of the excitement to stay up late and be silly - SO worth it! We needed to just play and let off steam.

Both girls, independently when Sam came home, ran to me to tell him - neither one of them could bring themselves to do it because they were just so overwhelmed and excited! (Of course he already knew, I think they just didn't realize.)

There was much jumping and screaming and screeching and crying and we looked like a stereotype of girls. Fabulous Day!

2011-05-15T15:33:00.002-07:00

Anna's had a pretty good week this week. Starting to feel some ill effects of the high dose methotrexate but as long as we keep up on her meds she is doing quite well.

For the rest of the week has been a lot tougher. There is just no way around it and it is horrible what happens so some people who have cancer. I just wish we didn't have this front row seat to other families' miseries.

I had planned to write about some sad stuff that had happened this week and some terrible stuff that happened this week and right now, my heart just isn't in it. I'm in a good place. The family is calm and content and I'm just going to enjoy the moment. I think that's a good place to be right now.

Off to enjoy what is left of the weekend!

2011-04-15T13:12:00.001-07:00

Creepy thing. Lately Anna has been asking about people dying. When do people die, will I (Bran) die, will she (Anna) die, when will she die. Then, we are driving around and she is saying (multiple times), "Goodbye world." Freaks my shit out. I HATE it when she does that. "Mom, when will I die?" I am utterly mortified whenever she says it and honestly I knnow she doesn't relate cancer and death anymore than she relates children and death. Dying is for old people and I think it is an age/curious/defining phase more than anything else but still...I have a hard enough time keeping my own horrible thoughts away - I don't need Anna helping add to them. I think Ella was three or four when she started asking these types of questions but now - it is so in my face.

***I just keep thinking about the net nanny and MS and it makes me laugh. I think there is only one word for you today *@*!*! Thinking of you. Love you.

You can judge my parenting, or my language but not my fandom

2011-03-24T11:51:00.002-07:00

So, we have, what to some people, may be excessive rules and regulations. It works for us so whatever. At our house we don't say the normal stuff, 'stupid', 'shut-up', 'dumb' but we also don't say (and by we I truly mean the girls b/c I say things all the time that are less than appropriate - hopefully not in front of the children!)

Anyway, one of the words that we have discussed and we don't really use is 'suck' as a perjorative (can you use that word as a noun? Whatever, it is my blog; creative license, artistic freedom - if e.e.cummings can type without caps, I can use an adjective as a noun - kind of like using party as a verb, wow. Seriously random soc writing there.)

- There has recently come into our lives a notable exception. Which Ella frequently uses and exploits as she feels as if she is getting away with something. :) The girls are allowed to say, "Cancer sucks" because, really, it does. There are a TON of other words I could use to describe it but for now, at 4 and 6 sucks is a pretty strong swear word!

Now, we of course, are obliged to watch Gonzaga Basketball. Especially during tournament time, I think they may take away our degrees if we don't so it isn't just something we enjoy, but it is something we have to do ;) The girls are learning to enjoy it or at least pretend they enjoy it in short bits so it is becoming more of a family thing. Also, in more explanation, the girls last fall/winter went to a couple of Seahawks games with Sam. They had a great time and Anna especially talks about going back. So, we are watching GU and there is another team and Anna is a bit confused about the whole football, basketball, baseball and team names thing. So we start discussing teams and how they don't play each other, they are different sports. Then the girls want to know who don't we like for football and baseball since we are obviously rooting against the team Gonzaga is playing. I made a joke about the Yankees and you totally see where this is going right? I said, "Yeah, the Yankees suck."

Immediately! I was reprimanded by both of my children while my husband sat there and rolled his eyes at me. Then, being the amazing mother that I am, told my girls, "It's okay. We can say Yankees suck." At this point Sam's mouth first drops open, then he bursts out laughing. Ella says, "We can say two things suck?" "Yes, you can say cancer sucks and Yankees suck."

Sam is utterly appalled! "Really Bran, you are comparing the Yankees to cancer?"

"Well no, I'm just saying they both suck."

Such an intelligent conversation that I'm sure everyone wishes they could have partaken. (is that a word?) Geez, I need a nap, or to quit drinking and staying up late every night.

Okay - now on to the funny post and just another glimpse into the amazingness (I know that's not a word!) that is Anna. A few days go by and we are again talking and the girls are fully exercising their newfound freedom is saying bad words. I ask Anna, "What sucks worse, Cancer or the Yankees?" She sat there, looked at us, pondered, waited, pondered some more...

"Ummm...that's a really tough decision. I don't know."

2011-03-09T16:18:00.006-08:00

put this on my FB, CaringBridge and here because I love it and it made me cry. We love the posters around the unit, we love the nurses (most of them ;)) and several of the nurses in the video have been Anna's nurses, including Megan.

We have NO idea what these parents and kids go through to get to transplant day - but everyday they remind us that we have so much for which to be thankful!!!

2011-03-08T12:27:00.003-08:00

We are just kind of hanging out today.

Knock on wood, things are going pretty well. No chemo for Anna Sun-Tues so we are taking advantage of no dr. visits!

Today Ella is not feeling well and is at home as well - they are kept separate, not sure to what benefit...I'm pretty sure all the hugging and smooching they do before Ella was sick gives Anna just as many germs - just now they are more visible. Sad Ella's missing her last math club, I think in addition to not feeling well, she's just really tired and worn out. It makes sense Sam and I are tired and worn out too. She goes to school all day, has playdates pretty much every afternoon, comes home for dinner and homework and bed. Not at all an ideal situation for a kid that cherishes her alone time. I hate that she's missing school but I'd rather her be home with us, not gathering more germs to bring home to her sister and possibly make both of them feel more sick.

Tomorrow is to be a long clinic day, I'm hoping not too terribly long. Anna is scheduled for her IT (intrathecal(spinal))chemo at 12:55 and Anesthesia is horribly late. Every.Single.Time. I don't think we have ever had an anesthesia appointment that started within 30 minutes of being scheduled. She is scheduled at 12:55 so hopefully we'll be in the after lunch lull and won't be too terribly late. She is unable to eat past 3:30 am but we're going to move that a bit - the cut off time for feeds is procedures before or after 1pm - I think it is close enough. Before 1pm, cut off is 3:30 am, after 1pm cut off is 7 am. Just watch, tomorrow they will have an opening or cancellation early and want to do her at 11 am or some earlier time and she won't be able. She's scheduled to get her Cytarabine (Ara-C) at 1:30 so I hope they aren't running to late witht he anesthesia or that will also be pushed and while the chemo itself is pretty quick and easy the waiting for fluids is what takes a significant length of time. The days when she is just getting Ara-C we are only there for about two hours.

Crossing fingers that her counts are still up so she won't need any transfusions tomorrow or that just throws everything out the window!

OH! I know I've written before about being afraid of messing up the meds or the timing or something...Last night I gave Anna her pain meds an hour early! Yikes! She was complaining of pain and she usually does that right at the 4 hour mark - except she was complaining at the 3-hour mark and figured the math wrong and gave it to her early! Stink! Won't be making that mistake again. Then, this morning, I was cleaning the kitchen and realized it is Tuesday - 10 am! Yikes! Anna needs ot have one of her antibiotics this morning. It is only given on Monday and Tuesday and she had her Monday doses, I just forgot about the Tuesday morning dose until later in the morning. I told Sam I need one of those pill boxes for her.

I think we are on morning five or six of Anna waking up and throwing up. We are going to speak with the dr. about this b/c Anna really doesn't want to take more medications. Even though they are in her feeding tube and she doesn't have to swallow them, she just doesn't want to take them. The 2nd anti-nausea is pretty strong with some really bad possible side effects - but if she is throwing up every day? What Sam and I want to know is it okay for her to throw up if she's okay with it - or should the goal be to not throw up at all? If she were eating more I'd be more inclined to just let her - she doesn't really seem bothered and it is pretty common to her now. She leans over, throws up, gets a drink and goes back to playing or whatever it was she was doing. Except for the morning - that is bothersome. We are going to start setting our alarm to give her anti-nausea meds overnight. Unfortunately, however, she isn't really eating, except salt ;), and her feeds are basically her nutrition.

2011-02-21T08:01:00.002-08:00

Monday AM -

Anna spent last night at the hospital. Sam took her to the ER yesterday for a pain in her leg so severe she literally couldn't put any weight on it. About 6 pm they decided they would admit her so at 7 she was moved to the floor. They have NO idea what is wrong with her leg. None. They have guesses. They started her on antibiotics and were hoping that would help things go away. Her counts are the best they've ever been - like normal, non-cancer person type numbers. Really Good! Except for this leg pain and the hard spot in her leg.

The resident told me they were suspecting three things:
bone infection
muscle infection
necretizing tissue blah blah blah - I kind of stopped listening after the necretizing tissue thing. I am certain that is NOT what it is.

Ella really wants to ski today. She is so funny about this - she pretty much wants to go all the time. Unfortunately her parents don't ski - I think I will have to learn just a bit so that I can ride the chair lift with her so she's not on her own. Maybe it is just me, I'm not really comfortable sending my six year old up the mountain and back down unattended, ;)

2011-02-18T23:00:00.001-08:00

Anna is not spending another three weeks in the hospital. She is at home! Her counts, with the fever, at midnight, were actually better than her counts earlier in the day. They did blood cultures which will take a couple of days to finish growing, gave her some Tylenol, watched her fever go up-down-up and sent her home. We could have to take her back at any moment if the culture shows anything but right now she is at home!!!

2011-02-17T20:48:00.003-08:00

Bad News -

Anna is back at the hospital tonight. She had a 101.5 fever and 101.4 is automatic trip to the ER. Hooray?...

Good News -

Anna's blood work was actually great today! She had normal range platelets, increased hematocrit and her ANC - which while we spent three weeks in the hospital needed to be above 200, just One time to go home, was 1536 today. Tuesday it was 109. Being home did her a ton of good!

Now we're just not quite sure why she spiked a fever - again. I am praying and praying that we do not spend another 3+ weeks in the hospital!

2011-02-17T11:01:00.002-08:00

Our friend Melissa calls things a 'let-go' as in, "That's a let-go." Evidently, one of my let-gos since January 10th, has been social niceties and discourse and polite conversation. People - all people really at one point or another - totally annoy me. I find myself unable to carry on polite, or even meaningful conversation. I lose track of the subject, track of time, interest...I just can't make myself pay attention. Which, I am afraid gives the impression of disinterest and to be honest, sometimes it is, but more typcially it is just, I can't. I think conversation has to be a let-go for me. It certainly isn't working out. ;)

I don't always want to talk about Anna or her cancer or her hair or Ella and her challenges and successes but I find myself reverting to the topics of a new mom. I discuss a lot of poop and pee and sleep habits and not a lot about politics or religion or American Idol or current world events or even things that really interest myself so I am sure I am boring everyone because I am totally boring myself (is that normal, do I typically bore everyone?!?!? That thought just occured to me - in which case it really is all a let-go! :) )

Someday. Someday I will be interested and capable of normal adult conversation, but today, not so much. Grown-up talk is a let-go. Anna needs to go potty.

2011-02-17T10:52:00.002-08:00

Heading into clinic today. When Anna checked out of the hospital on Tuesday we were so excited by the possibility of not returning to Children's until the following Tuesday. Elated!

Today we are headed in for a non-scheduled scheduled bone marrow biopsy. No school today or tomorrow so Ella gets to head in with us. I wrote a list and had her pack her own bag, we shall see how she entertains herself.

So funny - like interesting funny, not haha funny, Sam has missed the last two biopsies. Not because they aren't important, obviously they are, but there is only so much of us to go around. The biopsies, while they determine the course of Anna's treatment, are actually one of the easier procedures she undergoes. We aren't terribly keen on all the anesthesia or the fact that she is having her marrow syringed out, but the time under and the recovery is very simple and pretty painless for her - until we remove the band-aid, then it is sheer torture and screams as if we are removing her toenails with spoons. :D So we pick and choose what is important enough for both of us to be there for and what one of us can handle alone. We would both love to be around for everything, that just isn't possible. I, we, seriously, can't juggle that many balls, lots of them get dropped, in the snap of a finger.

Good Lucks and Prayers and Fingers Crossed. This has been one heck of a whirlwind crazy week and it is only Thursday! :)

2011-02-15T18:30:00.001-08:00

Anna's home. Eating pickles and tuna melt for dinner. Biopsy on Thursday, hopefully more results on Friday.

2011-02-14T17:03:00.002-08:00

Anna is back at the hospital today. She spent the night. :( Sam is home very sick. I am home kind of sick. We have great support. Our friend Alan went to the hospital after the nurses sent Sam home at 4:30 am. Grandpa showed up about 6 am to take care of Anna and Nonna is spending the night. It is horrifically frightening to not be there with her, but we aren't allowed if we are sick because it is even worse for her if she gets sick adn NO ONE wants her to spend another three weeks in the hospital. I miss her and I worry abouther.

Hopefully she will be able to come home tomorrow - they are thinking she may just have the tummy bug the rest of us have succumbed to...

Things I've Learned

2011-02-13T12:33:00.003-08:00

1. Anna is amazingly strong, stronger than any of us.
2. Ella is remarkably resilient and can be so incredibly helpful.
3. Sam does NOT rock the bald look.

Sam was informed that he needed to shave his head yesterday; so he did. Ella came home and cried when she saw him. I mean, he doesn't look terribly cute, but I don't think he looks *that* bad. ;)

Ella has been so helpful and she's more rigid than either Sam and I seem to be about staying away from Anna. She keeps telling us, "I don't want her back in the hospital.":( She is helping take care of things and herself - and is so amazingly patient when her wants and needs keep getting set aside, for one minute, two minutes, five minutes, an hour. She keeps on, even when she was feeling totally miserable.

Anna- proving her well of strength daily. There are so many things she does that I don't know that I would have the courage to do - especially feeling as miserable as she does. I have one specific example that brought both Sam and I to tears. For about two weeks Anna has been unable to really support her own weight beyond walking. We have been stablizing her when she walks as she is very tippy and could fall over at any moment, reminiscent of a college student on a Saturday night. Every day at the hospital she needs to be weighed. We have had to pick her up to weigh her on the scale because she is physically unable to step up onto the scale. Scales aren't that high, maybe one or two inches. The last time Anna tried on her own she literally crumpled to the floor in pain because her leg couldn't support her while she stepped up. I will admit, I totally lost it. I cried and cried at the visible manifestion of how her body is ravaged from the chemo. So, she'd been home less than 24 hours and decided to try and be her typical get it done Anna-rific self. She wanted to walk down the stairs. There is do possible way Anna can walk down the stairs, she can barely make it the ten feet from her room to the bathroom. She tried her hardest and Sam held her up and supported her weight as she struggled down the stairs. I helped her up the stairs. We have seven stairs for her to navigate. I held her tiny body under her arms as she struggled to take one step. Her legs can't support the weight change so she can't make the step. I basically lift her and she forces her legs through the motions of stepping up. Her body is rigid and stiff and she is shaking with the effort and this freaking awesome littel person fought her way up the stairs, it probably took us four to five mnutes to get upthe stiars. She was beyond exhauseted but so filled with the excitemetn of "doing it myself!" that she didn't even seem to notice the pain and the effort once she reached the top.

She has victories like this every.single.day.

I am continuously, utterly, amazingly, fantastically inspired.

2011-02-13T12:19:00.002-08:00

We are having a great time settling in - today is the first day the girls have been allowed together. Ella has been sick and has been in isolation in our room and bathroom since Friday.

Ella was working on her Valentines and Anna wanted to do Valentines also. I wasn't really prepared but she's pretty happy with what we came upwith, good thing Ella changed her mind at the last minute about what she wanted. She and I ran to Michaels to get the supplies for hers, Anna is happy with hers. It took the poor baby about ten minutes to write her name ten times. :( Now she is too tired and needs a rest after doing all that work. I feel so incredibly sad. Our poor precious girl that didn't know the meaning of being quiet or sitting still needs to rest after writing her name. It is such a slap in the face. Anna is such an amazing person though...truly. She is quite inspiring.

Tomorrow we are off for clinic visits and blood tests. If her numbers are good then we will begin the next phase of chemo on Tuesday. We are currently scheduled for chemo visits Tuesday-Saturday. I'm not yet sure about Sunday. I'm sure I can see the appeal for living at the Ronald McDonald House across the street.

It is wonderful having everyone home but not the same at all. I've slept in Ella's room, Ella's slept in our room, Anna sleeps in her bed, Sam sleeps on Anna's trundle. Currently our bedding is being washed - we have a new baby monitor (haven't used one of those in years!) and hopefully tonight everyone sleeps in his/her own bed.

Extremely stressful having Anna home. Keeping up with her feeding tube, the meds, the liquids, the output, the sleeping, the pain, the dizziness, the crankiness - is she eating too much, is she eating too little, is she sick, does she have a fever, should she sleep, should she be awake, is it okay that she's sleeping this long, should we wake her up, should we make her sleep, should we medicate her for her pain, nausea, intestines, dizziness...Endless, boundless questions without any clearcut answers. There is little about this situation that is concrete and it adds to my sense of unease.

Ella has actually skipped skiing both Saturday and Sunday this week because she's not feeling well enough to go, although Sam and I both suspect that she is fine today, and is choosing not to attend.

2011-02-10T12:13:00.002-08:00

I got Kisses today!!! Several Kisses! "I'm kissing you because I like you!"

Day28 -

Cannot believe it has been 28 days since she started chemo! Really - it seems as if we've been doing this forever and at the same time it is a blink.

They are hoping that the pathology from today shows that she has less than .01% of leukemia in her marrow.

Today is chemo, spinal chemo and marrow biopsy. Anna's been NPO since 4 am, I woke her up at 3 am for food and she had an entire popsicle, beef broth and juice. mmmmm...tasty, I'm sure.

Her biopsy was scheduled for 10:40 but as it is hospital time, currently it is 12:15 and we are still waiting.

Anna is feeling much better! She's reminding me to comb my hair and do my make-up. She has asked for her wedding dress and some jewelry, today she wore her LellyKelly's for her morning walk. Too cute. She's kind of sassy this morning so I know she's feeling better - just in time for more chemo - 'yay' - We'll have a couple of very quiet, very sick two or three days.

Results from biopsy hopefully tomorrow, more likely Monday again.

Today Anna and I have gone for a walk, met with the OT, did rounds, dressed some dolls. She's in great spirits... if you don't count missing the food. :)

2011-02-09T08:35:00.003-08:00

We have a 22 month old rooming with us yesterday and overnight. She is going home at some point today. Last night did not go well. The mother was happy b/c both girls were going to bed early. Well, Anna fell asleep around 8 pm. Her daughter was up crying! until 11 pm. Then, baby up again at midnight with vitals, Anna woke up and was cranky b/c baby was crying - just what everyone wants - a tired, cranky, starving, unable to eat solids 4 yo on steroids. Baby up again at 2 and crying and crying and not stopping. This of course woke Anna up and she was up until 4! Tired. The other mother came over and asked Anna if she (the mother!) could turn the volume down on her computer. I turned it down for her and was very polite. What I really wanted to say was, "Your child just cried for 15 minutes and woke up my child! It is your fault she's up watching a movie!" I, of course, being the model of discretion, did not say those words. ;)

Anna is ready to be home. "I just want to go home!" "I just want to sleep!" "I want everyone to stop touching me!" "Just leave me alone!" and my personal favorite for heartbreak and tears...
"I'm worried I will never be able to go home again!"

She is such a sweet girl. Not being able to eat since Sunday and then last night being allowed clear liquids she's been so worried about Sam and I eating. We aren't allowed to eat in front of her, but she really does keep asking us when we need to eat and trying to take care of us. It is utterly adorable and so indicative of what a giving sweet soul she is.

Last night the chicken broth was pretty blah and so Anna decided she would have beef broth instead. It arrived and she tried it and pronounced that it was better than the chicken broth but was still disappointed and not satisfied. "I thought there would be beef in the beef broth but there wasn't! There weren't even pieces of taco beef!" Sad sad discovery that the broth was un-chunky.

Yesterday she got a large volume of blood so was quite awake all day - probably why she was able to fall asleep so early. Meds are here - currently six syringes in the morning.

2011-02-08T11:04:00.003-08:00

So much happening but not a lot of developments. Just more and more fun to be had at the hospital...

Anna still has her feeding tube but hasn't been allowed any food or drink since Sunday. They think her intestines aren't working so they are trying to allow them to be completely empty with additional medications and without surgery.

It helps that she isn't being pumped full of so much fluid, she slept extremely well last night and didn't have to continually get up to go to the bathroom.

It is however, extremely cruel to give a child massive doses of steroids that cause them to feel ravenous and then not allow them to eat.

Last night the nurse noticed that her heart rate was quite low and kept checking it manually. It was also very irregular. They ran an EKG test on her, which she slept through but was not pleased to wake up with the stickers on her chest this morning. It is 11 am and we have yet to see any doctor today - the surgeon, the cardio team or the oncology team. Sam and I are a feeling a bit, more than a bit peeved. We both feel that our old team was more responsive and attentive. Sam wonders if it is because what she is in the hospital for now isn't for the cancer but for the side effects.

Thursday is coming - Day 28. I have no idea how it has already been this long! Thursday IV chemo, spinal chemo and bone marrow test. They are doing the bone marrow and hoping to find less than .01% of leukemia in her marrow. She went from 97% to 4% in two weeks so we are continuing to hope and pray.

Anna is feeling better now that her intestinal blockage is gone and she is definitely feeling more active. Today her weight was 14.3kg, yesterday she was 14.6. :( Now she is getting to be more of herself and is becoming much more vocal, more annoyed and less patient. She wants to eat - there is a huge list of food that she has us write on her plan board for what she wants to eat when she is finally allowed. She wants to go home and is extremely loud and vocal about her wish - almost as loud and vocal as her wish to eat.something.right.now!

Today is more waiting and more waiting. She is finished with the antibiotic so even though her ANC is not yet 200 we could go home if the intestinal and cardiac issues were resolved. I feel that stereotypical two steps forward, one step back but rather in reverse. One step forward, two steps back. Hard to maintain positive when every day or every other day is a new problem. I suppose it is to be expected with new normal. Sucks though and I totally don't have to like it!

2011-02-03T13:08:00.002-08:00

Just an update.

More of the same today. Slight dips in platelets and hematocrit. Drop in white blood cells, don't have ANC yet today but they are guessing it is 0 since the WBC is less than .2%.

We have not only new Fellow and new Residents but also a new Attending...I 100% understand and appreciate the teaching aspect but at the same time, I'd love continuity - since we have to be here - so should they. ;)

We have NO timeline for going home. It is all dependent on Anna's body. She is getting an NG tube put in for nutrition. They'll start the formula feeds this afternoon. I am feeling quite dejected. I know that we are to expect the unexpected but really, I am tired of being at the hospital. Anna is tired of being here, tired of the food. She's not sleeping well, not eating well adn just doesn't feel well. Tonight she wants Azteca for dinner. It is a major undertaking to get her food not from the hospital but if it will get her to eat - we do it!

Last night at 9 pm she started asking for fries. The grill is closed from 6:45p - 1am so no fries. I had the nurse wake me at 1 so I could go get fries. She ate a ton of them. Today it is Azteca, at least she's asking while there is still something I can do to make it happen. We waste a ton of food here - I feel terribly guilty but I prefer her to eat one or two bites of ten things than just two bites of one thing.

Today is more chemo, so all the good mood for the last two days will be gone. Once her nutrition is more under control she will start physical therapy. It is probably very uncouth to say, but she is looking more and more like a person with anorexia. It hurts to sit because her hip bones protrude. We can see all of her knee bones, foot bones, arm bones. Her little wrist is so tiny. I am very careful with her and still end up hurting her accidentally a few times a day. :( I am better with touching the port but it does still happen.

They keep telling us this is the easy part. So not looking forward to the hard part. I am trying to remind myself that this is just a blip, just a moment, temporary - it is very hard to remember and keep that in my mind as I sit here hour after hour. Anna's tiny little wasting body sleeping next to me. She's not a stellar conversationalist these days she mostly wants to be left alone and not be spoken to unless she initiates. She doesn't want people to visit. It is hard to sit in the dark, basically alone.

Anna has learned to 'sleep' when people come in the room - especially doctors and nurses. The other day, the day of the new residents, Rebecca(the Attending) was telling the new residents about Anna pretending to sleep. With her eyes closed Anna retorts, "I am NOT faking!"

There is a Charlie Brown movie about cancer, a girl with leukemia. Anna and I were flipping through channels and it was on and she wanted to continue watching it. We watched it and at the end Anna asked for it again. She also decided it is so great that she will give it to Ella for her birthday. :) "That movie freakin' rocked!" She seemed to really enjoy watching the girl who had the same tests and the same illness and also lost her hair.

2011-02-01T12:33:00.002-08:00

Tuesday:

ANC = 51, same as yesterday.

Platelets were down to critical level. Platelet transfusion this morning. Hematocrit is a tiny dip. White Blood Cells = .3!!!! GO Anna GO!!!!

RER

2011-01-31T20:14:00.003-08:00

RER = Rapid Early Responder!

Anna's bone marrow results are in - on Thursday when they did her biopsy her bone marrow came back as 4% leukemia - that puts her on the RER track! Hooray!

We did not want her as an S(slow)ER - that includes more chemo, for longer, and stronger...Yet again, more to be thankful for!

Her counts are doing well, her biopsy is good, now we just need Anna to be healthy. :)

Prayers of Thanksgiving tonight.

2011-01-31T12:27:00.002-08:00

Go Anna Go!

Anna's hematocrit and platelets have been mostly holding steady, slight one and two point drops since Monday. Great news! First time!!! She is not having transfusions every two days because she is hopefully starting to hold her own.

The doctors think that her own bone marrow is actually starting to wake up and respond again - thank Heavens!

Her ANC - which needs to be at least 200 for her to head home, was 0 on Saturday, was 21 on Sunday and today it is 51!!! Hooray!

Now...the not as exciting news.

Anna looks like a cancer patient. She is down to about 30 lbs, she's down about six pounds from her first admit on the 10th. She is looking incredibly frail and she feels frail. She tells us, "I'm out of all my energy." Her hair is almost all gone, her bones are showing. It hurts for her to lie down in the tub, when she gets out her spine is all red and sore. Her hips are hurting, head is hurting, tummy hurting. She hasn't kept her 8 pm meds down the last three nights, so not only does she have to re-take her meds she is also losing her dinner, which also doesn't help with the weight loss. She has started taking pills which makes taking the meds easier - not that she wants to take the pills but it doesn't make her gag or get sick as much. We are to start giving her more fat, more calories, keep stuffing her with food to try and keep her off the NG tube. We are trying to get her out of bed for a few minutes each day and to try and walk. Some days she fights more than others but it is not really optional. The dietician brought me a list today - included are shakes, smooties and rootbeer floats. Unfortunately, the chemo seems to have made Anna lose her sweet tooth. She never asks for anything like that. She wants burritos! :) Pizza, bacon, sausage...anything fatty and salty.

So, we keep on, hoping and praying that her body is responding and that she is starting to get better as the next phase of chemo is about ready to start - we need her healthy for that! Hoping to make it home this week. Crossing our fingers.

Curing Cancer Everyday

2011-01-30T04:38:00.004-08:00

We were talking with Dr. Cori and we told her about Ella's class making wishes for what they would want changed in the world for Martin Luther King Jr. Day. Ella wished that there was no leukima.

The Oncologists see a lot of stuff, so I'm sure it takes a lot to make them cry, but I think this caught Dr. Cori off guard and her eyes started to well up and she said, "Me too. Me too."

Then Dr. Cori told us that when she was twelve she told her mother that when she grows up she was going to cure cancer. So now her mother will ask her if she's cured cancer yet and she tells her, "Everyday Mom. I cure cancer everyday."

2011-01-30T03:36:00.006-08:00

We'd planned on having Brandi spend the night, but Anna had a last minute change of mind so here I am. There are so few things she's in charge of these days, so we figured if she has a preference about something we'll try and honor it.

Was exhausted all day Saturday. We made here go for a walk to visit one of her older nurses and she stopped at the play room on the way there, crawled up into a couch, and curled up to rest.

Tonight it was cute because she wanted to sleep on my fold out bed. So of course I let her after I figured out how to drag the IV pole over there. She's back in her bed now because the nurse had to draw some blood for labs and she crashed there after that.

2011-01-28T22:52:00.002-08:00

Anna and Ella went for a tiny bike ride tonight after bathtime. Well, Ella actually kept riding long after Anna was too tired and went back to her room.

Anna is learning to take pills because tonight she threw up two doses of her pred - kind of a super duper really important medicine she Needs to have to fight the leukemia. The taste is just making her gag. She did quite well with the pills, ticked off beyond belief to take them, but she kept them down! She then promptly asked for more food. :) Go Anna!

X-ray today, I was correct; bowel obstruction, that everyone: nurses, drs, Sam, all wanted to quit treating is still there. Smaller, but still there.

We had great guests today, a mom from my PEPS group when Ella was a baby and her 6 1/2 year old came by - fantastic to have someone else here to speak with! Thank You!

I also got the official information that my old MOMS club from Spokane is dedicating this years' American Cancer Society Relay for Life to Anna. Totally made me cry, happy tears. We also had amazing information from some other incredibly loving Spokane friends that made me cry too, happy tears. Thank You! Plus, Ella and Anna's favorite cancer book, "Chemo to the Rescue," is from different Spokane friends.

BTW- we've been recommending that book to everyone, the doctors, Child Life, Social Worker...pretty much everyone agrees that it is great. Tonight Cori, our Fellow, was in talking to us about the biopsy results and Ella asked for that book - "They really do like that book, don't they." Sam and I feel like we should order copies for everybody. :)

Tonight after Anna's bath I pulled her hair back. She has major tangles and mess going on, it is consistently tangling because all the loose hairs are wrapping up and twining in with the still-attached hair. Seriously it looks like a bird's nest. I can't bring myself to make her sit while I comb it because it just melts off her head as I stroke through it. Anyway, I pulled her hair back and out of her face and as Sam was leaving he looked over to me and mouthed, "She's bald." Yes, parts of her are. She looks a lot like her Grandpa with her receded hairline ;) It isn't as noticeable when her hair is down and messy or when she's lying down, kind of easy to overlook. But I think I have to do something with it because the nurses have commented on it - I think they think I'm being negligent, in reality, I guess I'm just trying to have it last just a teeny bit longer.

Anna is settling into hospital life much better than her parents.

2011-01-28T16:42:00.003-08:00

Bah. Mean Dr. Amy!

No, not really, but she did give us some not so great news. Evidently there has been some major miscommunication, for which she apologized, but still have to deal.

We have been prepping for Anna to come home Friday or Saturday, Sunday at the latest. She has had great bacterial results and her three negative cultures. Unfortunately we learned a bit ago that because she came in with an actual infection, that they found a cause for...Anna has to stay until her ANC is >200. These are the helper fighting white blood cells, kind of important to have - currently they are at zero. I don't think they've been above 26 yet. Best case is five more days in the hospital, it could take up to two weeks. Now, if they hadn't found a cause for infection, she could be heading home tomorrow.

Anna is also dropping weight and is lower than when she was first diagnosed and admitted on the 10th. Her blood sugar was 173, probably because of the prednisone and/or the pancreatitis. If she continues to lose weight and not eat a lot, she will be getting a tube down her nose into her stomach for nutrition. Evidently a lot of kids get the ng tube and some actually prefer it than having to eat.

Thursday

2011-01-27T20:26:00.002-08:00

Anna's still on low-fat diet. We are having some issues with her bowel and getting things straightened out. Some doctors think we should change meds, some think we should leave them the same, some think we should decrease them...All a guessing game.

The last two days have been very busy at the hospital with everything going on - I've spent the night at home, but feel as if I am playing catch-up all day.

What we know:

1. The PEG-Asp is giving Anna the pancreatitis - chemically induced. Still not sure how to treat this - did I already write about this? I'm thinking I did, oh well, I'm repeating myself a lot lately. Anyway, we can either let the pancreatitis continue and try to treat it upfront or we can change the chemo - neither are great options.

2. Anna's hair is rapidly falling out. Extremely rapidly. As in, she scratches her head and hair is entwined in her fingers. She rolls over and hair is on the pillow. We touch her hair to wash it and come up with multiple long strands. Brushing her hair is the worst, literally clumps of hair come out in the brush. On Wednesday we told Anna what was going to happen as it was becoming apparent that she was eating hair with every bite and it was falling off all around her. She started crying and hid under her blanket. We had a little cry with her but tried to be positive. It was utterly, undeniably, heartbreaking. This poor little sassy princess of her a girl, broken down in heartrending sobs, "I don't want my hair to fall out. I don't want to lose my hair." She looked at us and I will never ever forever forget, with the saddest look on her face, utterly dejected for the first time since we've begun this journey. This precious little girl that will sit for an hour to get her hair done in braids and pigtails and bows and ribbons and flowers and whatever she can dream up, fireworks in her hair :) and said, "I don't want to lose my hair. My hair won't be beautiful anymore."

I know it is just hair and it will grow back, but to her, it is such an important part of her daily routine and she plans hairstyles the night before so we can do them in the morning - I honestly think, a teeny tiny part of her spirit was crushed by this. She cried. For a long time and she hid under her blanket and refused to speak with us. She knows it will grow back and I know she has such an amazing spirit and brightness to her that she will be happy - but that teeny tiny piece, I don't think we can ever replace that. I don't think I've ever seen her cry that much for really anything, even being injured - even having cancer, even her sister telling her that she doesn't look cute - nothing quite this devastating to her person. A deep-down all the way inside nothing can touch sadness.

3. We have, irrefuteable, genetic proof, that, as Sam's Grandma Mary always said, his Mom's side of the family has 'good blood'. Truly, Sam and I had a good laugh about this. When we signed up for the clinical trial there was one small thing that could get us kicked out of the trial. There is a certain gene pattern that automatically makes you ultra high risk and even with ALL you are bumped to a different protocol and have different chemo, plan for marrow transplants - not a good scenario, however, this is pretty statistically insignificant. It warrants a mention in the trial literature but Cori told us that we don't really even discuss it because it never happens. There is also the opposite end of the spectrum, also statistically insignificant. The other pattern means you have better than normal odds to beat this leukemia. Guess which one Anna has - yep. The good one. So, because she presented as High Risk when she first arrived they can't downgrade her, but this does make her treatment, hopefully, a little better in the long term. How crazy lucky is that?!?!?

4. More on the clinical trial: When Sam and I signed Anna up for the trial we knew there could be some unknowns, some possible risks - but nothing we felt would be too great of a risk to Anna. There are four arms to the study and Sam and I discussed and discussed to sign her up or to not sign her up. The night we signed the paperwork Sam told me, "We are going to sign her up and all of this will be for nothing. She's going to get the traditional protocol." He was totally right. The trial has been running since 2000(?) 2004(?) Long enough that we felt comfortable with Anna in it and that nothing bad was going to happen to her. They had made two major changes during the study because the results were not good. Two groups of kids were removed - not that it really matters for us, but kids over the age of 10 and kids with Down Syndrome. *evidently, kids with Down Syndrome have higher incidences of leukemia* Neither of which applies to our daughter.

So...on Wednesday afternoon Cori came in to give us the results of the genetics testing and also to speak with us about the trial. We had signed the paperwork at night and she said literally the next morning an email came into her inbox. The protocol was changing and she wasn't to sign up any more participants until they had re-written everything. Well, evidently, they found out that one version of giving methotrexate is MUCH BETTER for leukemia results than another version. It is harder on the kids in the short term but with statistically significant better long-term results. This time, they changed the study for a good reason! It does mean that we will spend at least one extra week in the hospital in Feb. or March to give the dosage she needs, but it has better overall outcomes. If we weren't in the study, Anna would miss the window to get the new protocol before it is re-written.

5. Ella is so sad for her sister, sad for herself, but I think more sad for Anna. She told me tonight, she never feels mad that Anna has cancer, just sad. Today she finally met the Child Life Specialist, I had her paged to meet and speak to Ella. I told Julie that Ella is feeling a bit jealous about Anna having presents and cards and balloons. Ella piped up and said, "Not anymore. I don't feel jealous anymore Mom." Julie and I both reassured her that it was fine for her to feel jealous and that a lot of kids do when their brother or sister is sick. "No, I don't feel jealous, I am doing too many fun things to feel jealous." So - thank you, AGAIN! to all of our amazing family and friends for the care and keeping of Ella - we honestly could not do this without all of the help and support we have been receiving.

6. Today Ella and I bought Anna an adorable little hat, they just happened to be selling them outside the gift shop - there are always local vendors that are allowed to set up in Children's. It is a little pink knit cap with tons of pink flowers on it and the flowers have jeweled centers - totally Anna-riffic. :)

7. Also today Sam got his first teaching on how to give Anna IV meds at home. I was going to try but I just can.not. do it yet. Tomorrow they are coming back for another teach and a test - prepping us to hopefully go home on Saturday. SO Scary! But, I guess at least now he gets to worry he'll do something wrong too ;)

- I feel like there should be ten but this is really long and I am so tired - I need to leave it unfinished.

Oh Oh OH! My randomness, might get me to 10 yet.

8. I am reading a pretty good book for parents of cancer patients, Anna's Social Worker gave it to us our first week (I think it was her social worker). While it is a good read, I really would not recommend getting it. One of the things it says is that most parents get sick a week or two after their child's diagnosis. I guess that explains the cold I've had for the last week and a half! There are a lot of good take-aways from this book and one of the funniest things I've read is from a parent - posted on a bulletin board in an Oncology wing.
How do I feel? Don't ask!...aside from nervousness, irritability,
exhaustion, faintness, dizziness, tremors, cold sweats, depression,
insomnia, muscle pains, mental confusion, internal trembling,
numbness, indecisiveness, crying spells, unsocial, asocial, and
anti-social behavior...I feel fine...Thank you.

Now, I don't feel that bad and I really don't mind when people ask me how I feel, but it is funny.

9. Anna has chemo-brain. I've read about this, the chemo makes them fuzzy and foggy. Add to that the sleeplessness, the sleepiness, the pain, the pain meds, the chemo, the anesthesia, the uncertainty - plus all the side effects of all the different meds and cancer patients have it pretty rough. I was not quite prepared for it to happen and happen so quickly - as with most things lately - they are happening much more quickly than I expect. Anna has experienced a lot of side effects but mostly treatable thus far and actually quite mild except for the jaw pain. Today after her biopsy she was waking up - so not only the anesthesia but also her generalized haziness lately and she asked for graham fish and gold crackers. Tonight she was trying and trying to remember a place that she loves to go and couldn't remember the name. I also read that a lot of kids have trouble learning and retaining information, possibly for life, after undergoing treatment. :(

10. Lastly, mostly because I was so close I had to finish it out. This should probably go with the Ella section but whatever. Oh, Ella had a great report card - that's good news too! I think her teacher likes her more now, I'm sure it has nothing to do with Ella's work. :) Anyway, the book also talks about bringing gifts or cards to the sick child and that some families instituted a rule that a gift for all children or no children. That is not happening at our house and we've discussed reasons why and that different kids need different things at different times and that we'll do our best to see that everyone gets what they need but that it won't always happen but we all have to try our best. But, a good take-away from the sibling perspective portion of the book was to ask the healthy child, "How are you doing? How are you feeling?" Basically to recognize the healthy kid and to not just always ask about how their sister is feeling - now, we have been incredibly fortunate with EVERYONE and taking care of and looking out for Ella. This was a good reminder to me to make sure that she and I have conversations that don't just discuss Anna and her treatment and hospital stays. To let her to be silly even when I am so not in the mood to listen for the 1100th time about the singing bathtub that sings pop songs. :)

More on Tuesday and Wednesday, plus Thursday

2011-01-27T12:55:00.003-08:00

Hard to keep it all straight!

We learned more information about what is and isn't making Anna sick this time. I just found out from the Fellow that Anna most likely won't be going home tomorrow. I think they are going to keep her on the low-fat diet until they get her lab results back. Today, (Thursday) they are taking it off for one meal, she didn't eat for several hours pre-biopsy and she is craving burritos! The doctors changed her orders, ordered her a burrito, and then changed her order back - Yay for great Residents!

Speaking of residents I will be so sad when their rotation is over. I love them. They are all going to be amazing doctors! Dr. Amy is phenomenal and soooo very smart. She is the resident that told us she'd only been in Oncology for seven days so couldn't speak to our question practically, only theoretically. She is... just great. She told me that she's requested to do another rotation in two months back in Hem/Onc - we will totally get to see her again if she gets her request! Dr. Jeremiah is so funny and great with Anna. He's the overnight on-call and today drew a picture of himself on the plan board in Anna's room :) Dr. Sam is very nice and calm and serene, he never really speaks without thinking it through, very much like Sam. I have no idea how anyone could possibly speak with him, even about bad news, and not come away calm and feeling reassured. Dr. Tim is the ER Resident that has been there several times with Anna - he's great too - he has hoop earrings in each ear. Anna thinks that is silly. He is a little more hyper than the others, but quite good. Julia is Dr. Amy's med student, which means we see a lot of her this week. She is very young and eager and enthusiastic and very much a self-starter. We were her first set of presentations on her first full day, today was day three and she was much much better - amazing to see how quickly they learn. She messes up, Dr. Amy corrects her, Dr. Cori corrects Dr. Amy and then whomever the attending is corrects Cori - it is a great system. :)) This week our attending is Rebecca or Dr. Rebecca if we aren't comfortable just calling her by first name.

Cori is the Fellow on Anna's case - she is soooo smart and much more well-spoken than any of the residents, but nowhere near as fantastic as the Attendings. Cori is cheerful and knowledgeable and works very well with Anna and it amazes me how many of the doctors' favorite color is Purple! They all remember her and her pets and animals and their names and her sister's name. Seriously, in the last 6.5 years we have seen a LOT of Residents and a few Fellows and some of these are the best we've seen, especially Dr. Amy. Plus, I also learned, that just like on Grey's Anatomy, we should not always assume they are wearing panties. ;) Did I already mention that?

Tuesday and Wednesday

2011-01-27T10:02:00.002-08:00

So Tuesday we found out that Anna's infection is a blood infection, they added an additional antibiotic - so now she was on four antibiotics two of which are extremely strong and can cause other problems.

We found out on Tuesday that Anna has pancreatitis. We have since found out, after CT and Ultrasound, and much lab work, that it is a chemically induced pancreatitis. The issue is that the know side-effect of one of her chemos, the PEG-asparagus ;) causes pancreatitis in some patients. So, now we have to determine (by we I mean the medical team - not Sam and I) if the best course of treatment for her is to continue with the PEG and treat the pancreatitis or give her a different chemo drug. We are not thrilled with either option because I don't want the pancreatitis to get more severe but I don't want a Tier 2 chemo either -kwim?

We also found out that she has thrush. Anna will be now recieving an additional med propholactically to try and help prevent thrush and other yeast problems. :(

Since Monday she has had an x-ray, ultrasound and CT scan. All for her tummy - yes pancreatitis, no to gall stones and kidney stones - phew!

2011-01-27T09:44:00.002-08:00

A couple of days of updates.

I've spent the last two nights at home with Ella and Sam has been at the hospital with Anna. This worked out well for me, not as well for Sam. We've been at the hospital since Monday about 4:30 am -

Monday was terrifying - truly. Anna's fever was 106.4 and they couldn't bring it down, she's not allowed Motrin only Tylenol and it still wasn't coming down. No one knew what was wrong with her. They kept pushing different antibiotics on her and heart rate was running very high, 155-166. They were debating sending her back to Oncology or to ICU. No one really wanted to take her, I asked the Dr. and he told me that it was actually safest for her to be in the ER b/c she would have a more rapid response time if needed than on the floor.

After the 4th antibiotic her blood pressure dropped extremely low, which meant that they felt confident they'd found something to kill whatever infection she had - still didn't know what it was yet. She had an x-ray and were measuring her belly because it kept growning. It was very distended and hardened. We still couldn't move her. Eventually, probably about 4 pm she was stabilized, heart rate down and blood pressure back up and we moved to Onc.

They found out she had a bowel obstruction and a blood infection. The infection is similar to staph I've since found out and they have a name for it - honestly, I don't really care as long as they take care of Anna. The blood infection could have come from poor line care since they are accessing that line multiple times a day for transfusions, meds, blood work or it could just be something that came in off her own skin that has lived with her for years.

I have never felt this helpless. I was panicked about what was happening but you have to hold it together. No one knew what she had, why she had it, how to cure, how to make her comfortable, how to stop it AND no department really wanted to keep her! This was the day with cute Nurse Aaron ;) He was great, one of the best nurses we've had and very calming and steady. This week Tues-Thurs Anna has had a male nurse and he is just not quite as reassuring. I think it doesn't help that he looks like he could be a pot-smoker with his dreds wrapped up on his head. Totally totally judgemental and incredibly shallow - he is perfectly competent but he is not calming or reassuring and is not into talking or comforting. No hand-holding at all. Anyway, Nurse Aaron was with us almost all day and Anna's pharmacist Shannon came down and gave her two more cool Beads of Courage. We (I!) LOVE Shannon - she is Amazing and Cheerful and SO Very Knowledgeable! I found out that sweet sweet Shannon is married to Nurse Aaron <3.

2011-01-26T13:01:00.002-08:00

Heart Break.

Anna is feeling better, I slept at home last night so I feel better not being woken up all night. Ella is doing better. Sam is probably not doing better after spending the night here and then going to work extremely late today.

I can see the Weedle

2011-01-26T05:27:00.002-08:00

Staying overnight with Anna in the hospital and I get treated to cute quotes like this:

Dad, I can see the Weedle. I can only see his nose at night because the sunshine blocks it during the day. I like seeing the Space Needle from my room. This is my favorite room at Children's.

Anna is just amazing and can find a silver lining in just about anything.

2011-01-24T17:24:00.002-08:00

I accidentally pulled on Anna's line! So freaked out!!!

She can finally eat! She hasn't eaten since about midnight last night. :( She asked for a burrito and tater tots and water. We are in ISO, again. This time it is because I have a cough. If it wasn't for me, Anna could leave and go to the other rooms and play and ride bikes and see kids and leave her hospital bed for a few minutes a day.

CT scan shows a large blockage in her intestines, we are giving extra doses of medication to move that blockage out. Good news here is that her intestines and intestinal lining isn't perforated. She has an infection in her blood - gram rod positive (?) - basically a blood infection that they are pretty sure she contracted in the hospital. They don't know the specific kind yet, but are taking her off the first three antibiotics and giving her a single heavy duty antibiotic and will tailor the treatment more once they know the specific strain.

She will be here for the next few days, the antibiotic she is on will be a 14 day course, hopefully we won't be here for all 14 days. We are not sure how long, she needs to be fever-free for a minimum of 24 hours and currently she's about 103.8 (I think, I know the last one was about 103.) She also needs to have three non-bacteria growing blood cultures before we go home.

Today was a very very extremely scary day! I am extraordinarily grateful that they know what kind of infection and that they found a cause. Highly stressful.

Tomorrow, Tuesday, we were to have a photographer take pictures of the girls, tutus and girly and pink and purple and sparkly and glittery...not going to happen. :( It may still happen depending on when she is allowed to leave the hospital - but the really sad visible part has begun. Today she was lying, ready for her CT and some of her hair was caught under her arm. I picked up several long gorgeous strands and put them in my pocket. What makes this doubly sucky is that pretty much every person who saw Anna today commented on her hair and how beautiful her hair is - I wonder what they'll tell her when it is all gone - will she think people don't think she looks nice anymore?

Sam and I told Ella about the hair yesterday, she was very upset but recovered well. Then, Ella and I went shopping for tutus and fun clothes for the runway photo shoot and we saw two women/girls with head scarves and bald heads.

I feel 100% wholly unprepared to be the mother of a child with a serious illness. I'm scared, I cry, I pull on her port, I can't look at the lump where her port is, or put medication on it before we leave for the hospital, I get faint when I think about the needles and the pokes and the port...Today one of the nurses asked what I need and I looked at her and she said, "A magic wand?" Yes. That is exactly what I need - a magic wand. I found a tee that says "There wasn't supposed to be cancer in my Fairy Tale." How perfectly appropriate for Anna.

I don't like being here, but I do like that it feels more secure and safe - they know what to do when her fever is 106.--. I also like that everyone tells Anna what a great patient she is -because she truly is - totally amazing and awe-inspiring.

***To Dan H. - Thank You! You made me laugh and I think someday I may do that, when I don't cry just trying to say the words.

2011-01-24T12:31:00.001-08:00

Ack! Such craziness!

2011-01-22T22:33:00.002-08:00

New Normal = going to the hospital at midnight Friday night, hoping your child doesn't have to be admitted, hanging out at the hospital until about 5 am before being sent home. Both parents being so exhausted and making a plan to never both go to the ER in the middle of the night again because that is just too much tired for one family. Terrie was here and stayed with Ella - fortunately. Anna was sooooooooo mad at being back at the hospital and wouldn't sleep and wouldn't eat and was so fussy and then she started being just mad! I'm exhausted, Sam's exhausted and Anna decides (or not) to have some temper tantrums.

I finally got into bed about 5:30 this morning, Anna came in around 8 maybe and crawled in and slept with us. Hospital called at 9 am saying Anna's platelets were low last night (DUH!) and that they wanted her back in at 11 for a transfusion. So ticked at myself for not pushing last night. I saw her petechae were returning, palms and feet bruising and we asked the resident but didn't push. So, an early morning wake up and another day spent at the hospital. Last night's blood counts were 11,000 - 10,000 means a transfusion. So, the poor thing got to get poked - again, have another set of labs drawn - again because we didn't push hard enough last night. Then poor Anna had to stay for the blood draw, labs, wait for results, decide they need platelets, order platelets and infuse her. :( Poor Baby. Next time I will absolutely be more vigilant.

Sad discoveries for Anna - she still doesn't know about what all is happening to her and what all will be happening or not...Today she asked Sam how many days until her half birthday and was so excited with the answer and hwo close it was and that we would be going to Disneyland in an even shorter time...She doesn't know that we won't be able to go for a very long time - long enough time for her to not believe in Princesses anymore. :( My heart breaks for her - she doesn't know, but we know. She has no concept of the length of time or the seriousness of her illness. She talked Sam into taking her to Frost for doughnuts. They got theer and she started unbuckling her carseat to get out of the car- she didn't realize she'd have to stay in the car. Then she was sad b/c she couldn't pick her own doughnut and today was definitely the best she's felt since she's entered the hospital. I think I'm getting bogged down in the sad things tonight - which I guess is okay, but there are still good things and great things and amazing friends and family but right now I'm having a very hard time focusing on them.

Truly crazy thing is I actually had an amazing day (besides the sheer weariness that makes it hard to concentrate.) I'm jsut so sad thinking of all that Anna is missing nda more what she will be missing. I hate when the people at the cash registers ask, "How are you doing?" "How are you today?" They really don't want to know and then when they say it all I c an think aobut is 'do you really want to know how I'm doing - because let me tell you - pretty frickin cruddy - not so good in fact' I of course, don't say those things because they really don't care how I'm doing and I know they are asking to be polite, I just wonder what they would say if I blurted out "Pretty bad actually, my four-year-old was just diagnosed with cancer." Can you imagine? It is kind of a funny thought but really, it isn't funny and really I wouldn't ever say that and I'm absolutely positively certain that I couldn't make the words come out without being an absolute blithering idiot. Many reasons this wouldn't be a good plan.

I think I just need to go to sleep as I am sitting here and making myself more and more sad - this cannot be a good road to head down.

2011-01-21T22:58:00.002-08:00

Day8 Results:

It took *forever* to get Anna's results back from her biopsy yesterday. It was about 5:30 this afternoon.

So, evidently what both Sam and I remembered is not what we were told today. Anna's ARNP called us and sounded very excited on the voice mail, but it didn't match what we remembered being told. I paged her and she called us back on her drive home.

Anna's biopsy result is 7.5% of her bone marrow in cancerous - 92.5% is not-cancerous! Anna is in a research study and Karen (the ARNP) told us that they haven't yet met the date for deciding RER or SER - both Sam and I remember Dr. Cori telling us that would be decided on Day8 - Karen says that isn't so. She says that it is decided on Day15 for study participants. So, next Thursday Anna will have another biopsy along with her chemo...not terribly fun and then we get to look forward to another wait for test results. Karen did say that she believes the pathologist did an extra special sensitive test rather than their usual test - because she doesn't typically get results in 1/2 percents and the special sensitive test (MRD) takes about 24 hours for returns.

Karen says to be classified as RER Anna needs to be less than 5% on Day15 and again less than 0.1% on Day29. We will wait and see - I believe her, but Sam and I also remember what the dr. told us... we will take this as great news today! That's what Karen said, "That's great news!"

Lab work and probable transfusion on Sunday - keep hoping there is no fever so we don't have to go back to the hospital!

Today was my first day at school since more people know. I wasn't looking forward to it, but it wasn't as bad as I anticipated. I got a lot of hugs and a lot of support and offers of help - all wonderful things. I met with Ella's 1st grade teacher and her Kindergarten teacher - they are so sweet and amazing. We have delightful teachers at school! That was the hardest part of today - the kindergarten teacher had a baby in October and is so full of emotion, it was sad but sweet - we love her!

Ella and I had some serious conversation tonight about what this means for Anna and what it means for Anna's near future. Ella mentioned staying up late and Anna says, "Don't say that, it makes me sad because I can't stay up late. I have to go to school tomorrow." :( I just can't tell her she won't be going back. Most of the time she's been too tired and out of it to even consider school but tonight Ms. Terri came over with care packages from the pre-school families - sob-inducing!!! Anna actually got out of bed and came and saw Ms. Terri, not sure if she actually spoke with her, but they did get a chance to see each other. Ella's class made cards for Anna with Ella/Anna word searches inside. I can't even begin to tell about all the wonderful things that came into our house today.

I spoke with a LOT of people on the phone - it was kind of a catch-up day, sad, but good sad. It is getting much easier to talk about and say the words - but every now and then Sam and I will just look at each other and one of us is like, "Shit, our kid has cancer!" Most of the time we are so focused on getting through the day and moving forward that we don't have time to think about it. Trust me, no one wants to be in on the conversations when we go to bed at night. Tee Hee, that sounds much more fun and exciting than it actually is. :)

Tomorrow I am leaving the house, hopefully to go run some errands and leave the house for more than the hospital! Grandpa is taking Ella skiing this weekend and Sam and I are going to try and have some social contact that does not involve doctors and nurses.

2011-01-21T11:29:00.002-08:00

Anna doesn't want anyone right now, Ella's at school, Sam's at work - this feels crazy. I feel like I should be cleaning house and organizing and getting things together and I totally am not doing because I really don't feel like it.

I was thinking earlier today that there was a time in my life when I stayed up until 1, 2, 3 in the morning and got up 9 or 10 and was perfectly fine with it - that was my old normal a couple (or more(?)) of years back... I think the age is catching up with me.

No word from the dr. yet, she did say later this afternoon, unfortunately I am not terribly patient.

Go-Bags - you know when you watch FBI shows they have a 'go-bag' to be ready to leave town at a moment's notice? Well, that is like us, only it is nothing quite so cool as FBI. We do need go-bags in our cars, one for each of us and one for Anna because we never know when we'll have to head out and possibly stay at the hospital. Last night Anna's temperature was steadily rising after we came home from the hospital and rising rapidly. We checked every fifteen minutes and it was creeping up, creeping up. 97.9, 98.3, 98.9, 99.6, 99.9 and it hit 100.5. 101 is the limit - that means call the doctors and tell them we are on the way now. It probably means she has an infection and will need to be hospitalized. It hit 100.5 and Sam and I decided that it was finally time to pack our bags and be ready. I checked 15 minutes later and it was 99.4! Phew!!! So, we are spending our day at home. She was crying this morning because she didn't want to have to go to the doctor's office today. I cannot begin to tell you how relieved she was when I told her no appointments today. :)

2011-01-20T20:19:00.002-08:00

Sam and I got our long-term Children's passes today. Our passes are good for the next six months so we won't have to get them every day or every week. That will definitely save us time as we are checking in to the hospital.

Anna had a blood draw this morning and was supposed to follow that up with her biopsy, spinal chemo and two IV chemos. Well, her platelets were low, again, so she needed another transfusion. The only problem is b/c she was being put under anesthesia she wasn't allowed to eat, the poor thing was Starving!

She came home and promptly started eating. Up first, three cheese sticks. :)

Not a lot today, news and movement on the photographer. Our trip is cancelled and paperwork sent into the airline and Disney from Anna's attending and social worker.

We didn't get full lab results back today - I did speak with Anna's nurse practioner and she gave me some numbers. Unfortunately, the results from her biopsy won't be available until at least tomorrow. Sunday she is scheduled to go back in for another set of labs. We made the appointment for early in the morning (we can't all go to church anyway :( ) so that if she has to have a transfusion it will happen earlier rather than later.

One of the chemos, Daunarubicin, has an interesting side effect. We arrived home from the hospital and Anna needed to go to the bathroom. Sam came out and said, "Um, is something wrong with her pee? It is pink." Fortunately I knew of that possible effect and was able to reassure him. The other chemo, the Vincristine has the unfortunate problem of causing jaw pain. This means Anna hurts too badly to eat unless she has had pain medication. Poor Monkey. There are also problems with the spinal and the bone marrow aspiration - they cause her pain in her hips.

I don't have a ton of news for numbers today:
-Hematocrit is slightly up
-Platelets are up after transfusion on Tuesday, but still too low
-White blood cell count is down, expected - kind of the goal of chemotherapy
-ANC: Absolute Neutrophil Count - these are the special cells that give us an indication of how her blood cells are recovering - stayed the same as Tuesday.
-Blasts are down

More news in the late afternoon tomorrow. That's the problem with doing clinic instead of hospital, hospital results come Much more quickly - it is Awesome being home though!!!

Kind of blah today, long and mostly I'm just very tired. Dinner was great! We came home from the hospital, unpacked, got Ella started on homework, I started doing my hospital homework and dinner arrived. Perfect timing. Thank You So Much!

2011-01-19T21:47:00.003-08:00

In less than 12 hours Anna finished 16 oz. of cottage cheese - with extra salt. She then proceeded to eat all day as long as we kept up on her pain meds (no pain meds and her jaw hurts too badly to eat. :( ) Tonight she requested grilled cheese and tomato soup. She promptly polished it off. She then requested pizza, which she doesn't really like, and bacon, of which she is moderately fond. She ate two slices of pizza with bacon on top. Guessing that is the steroid diet kicking in - eat and eat and eat. They told us she will crave starchy, salty, fatty. I think the grilled cheese and the pizza both fit that description. She again asked for broccoli. Silly kid - I offer her cookies, candy, crackers, yogurt, cereal...anything she wants to get her to eat - she asks for broccoli. At the hospital she wanted broccoli, corn and green beans. What a good girl. :)

Again, I know I repeat myself over and over and over again and it is redundant, and repetitive, but truly - we are so fully blessed and so incredibly thankful and we have no words to express our gratitude. We had a great dinner and conversation from/with friends (Love You!)

Staying home today was nice - Anna needed a lot of care and attention of course, meds are getting easier. I could spend some one on one with Ella plus I could do laundry! It is all currently piled in a mountain on the playroom couch but at least it is a clean mountain. Sam did a great job while we were in the hospital of taking care of he and Ella daily and making sure we all had clean clothes and whatever else I needed to stay with Anna and be comfortable, today was a chance to do a little catch-up. Phew!

We also had wonderful response to the question of photographer; thoroughly amazed at what a couple of hours can accomplish - Thank You Ladies!

I'm thinking of tipping Anna some extra oxycodone so that we'll all get to sleep before 2 am (Just Kidding!). Last night she was up until two, up at five asking for cottage cheese. Sam, of course, went to the grocery store - twice for her last night/this morning. Once for spaghetti o's and once for cottage cheese.

Melissa (1/2 of Ella's Godparents and coordinator extraordinare) says Anna is just like a little pregnant woman - she is totally right :) She is cranky and hormonal, has mood swings, food cravings and is growing a little round belly. The belly is a known side-effect of the prednisone, as are the cranky, the mood swings and the non-stop eating.

Tomorrow is Day8! Big day. We have everything settled, I think. Drop Ella off early and head to Seattle. Ella is being picked up after school, two booster seats ready for two rides.

Blood work at 8:40
Dr. at 9:45 (hopefully with test results)
Biopsy and spinal chemo at 10:45 so they only have to do one round of anesthesia.
IV chemo when she recovers from anesthesia. The chemo will take a while to push and then we wait an hour or so to watch for reactions to the chemo. Also, if she has to get blood or platelets before the surgery, everything will be pushed back until later in the day. No eating for Anna after 4:30 this morning - I'm not going to lie, I'm a little scared about that. She is going to be TICKED OFF.

Prayers for us tomorrow - tomorrow is the day that determines the next phase of Anna's treatment - we are hoping for great news!

2011-01-19T13:35:00.003-08:00

ETA: Evidently, there is a direct correlation to my typos as to my mental state of unrest. >tears = >typos It's okay, I'm totally not mathematical - Sam and Jaz can laugh all you want. Kind of crazy to re-read when I'm not a sobbing blubbering mess of momma.

Okay, just putting it out there. I have to do a little research on my own but am feeling a bit staggered to do too much. I would love some suggestions - every time I think about it I have an enormous breakdown and am ever thankful that I don't blog w/ a webcam.

We would love to have some portraits taken in the next week or so, before Anna starts showing the visible effects of the chemo.Our options are limited b/c Anna can't be in very many places and we don't know what days she'll be feeling better or not. It may not be possible, but we'd like to try to get it done if at all feasible. Aslo, Sam really would like to have someone come and do some 'fanyc hair' for her - liek hair salon hair but obviulsy not at the hair salong. Thank you for any referals or suggesions.

Tuesday

2011-01-18T22:52:00.002-08:00

I went to date this post and realized I literally have NO idea what day it is - none whatsoever. I know that it is Tuesday and that we are Day6 of treatment.

I also know that we have amazing friends and family and that we are well and truly blessed. My little family is being very well taken care of while I am unable to do it and I just don't have the words to share my appreciation for ...everything.

Today we had to go in to Clinic to get lab work for Anna. It was our very first Oncology Outpatient visit and it was the first time she'd had her port accessed since it was put in - she was very very scared but was Amazing! Seriously - she is so much braver than I, no question. The worst part for her was removing the adhesive - the actual jab into her tiny chest with a large needle - freaking fantastic. I am amazed, consistently, by her attitude and behavior and what she can deal with on a daily basis.

We left the house around noon and returned home after 8 pm - long long long day. We had Anna's labs taken and then went in for a follow-up (f/u, tee hee) with the Nurse Practioner. She got a page in the middle of our visit because Anna's platelet count was 9,000. The lowest limit for transfusions is 10,000 - she was listed as critical. The cruddy thing about this is that the blood comes to the hospital from the blood bank and takes two hours to arrive. Anna and I got to hang out waiting. I didn't bring her pain meds, I brought snacks but not the right ones, especially when she really started having pain and couldn't chew or swallow. My phone died, the laptop eventually died and the room we finished the day out in didn't have patient-accessible outlets.

The platelets were about 1/2 finished and Anna perked right up - seriously, she started jabbering my ear off and then swung her legs over the rail of the bed! Scared me about half to death. Getting blood products always perks her up and makes her feel better - we can see it and hear it. I asked her if she was feeling better, "Oh yes! A Ton!"

You could tell as the day progressed that she was getting worse and worse. You could practically watch the bruises form all over her body. She was even getting bruising on her palms and the soles of her feet. She had new bruises across her back and her stomach - from basically lying all day she was bruised. It is unreal to see and five minutes later she has more bruising...It makes me afraid to touch her because touching her not only causes her physical pain depending on her levels, it also shows up on her body. Hugs cannot be very comforting.

I wanted to faint while getting an unintended peek at her port - it is still swollen and incredibly bruised - I also think, although I have NOT, nor do I intend to, check it out; I think there are stitches over a portion of the port.

Lastly, "Chemo to the Rescue" arrived on our doorstep today from some amazing friends - great great great childrens' book and explanation of leukemia and chemo, non-scary, factual and it is Very, Very, Extremely similar to exactly what is happening to Anna. I finished reading it to her and she said, "I like that book." We talked a lot about how it was similar to her and what she was doing. I also found out, "Platelets look like yellow broth and blood looks like tomato juice." Yum.

I anticipate being up with her again until 2 or 3 and hopefully, keeping my fingers crossed, we will be home all day tomorrow.

Housekeeping

2011-01-17T22:37:00.002-08:00

If you have offered help, I have forwarded all the names and emails I have to Melissa - I think her email says Mel and not Melissa, I haven't actually typed it out - she's doing the organization for us.

Today I had to decline an email for a volunteer position at school that I would really enjoy. Sad about that - I'm not quite sure how new normal lends itself to me spending time at school. Is it even safe to then come home to Anna? Probably not.

Anna is basically housebound for the next few months is what I'm understanding. She can have healthy people come to the house but she isn't to be around any crowds. I have numbers that stipulate when/where and what her counts need to be do anything either large or small group but since they are hanging out at zero, and should be there for some time, here we are. No church, no school, no eating out, no shopping, no movies...she literally spends her time in our house or our yard. Maybe someone else's house in a bit if we can rely on the germ-free-ness of not having sick kids.

We have rules for what she is able to eat and what she isn't able to eat on her immuno-suppressed diet. Kind of similar to pregnancy diet - but more strict. Funnily enough she can still have fast food. We are to tell them she has cancer and that she needs perfectly fresh french fries or whatever - she can't eat anything that has been sitting out.

Today I told someone that my daughter has leukemia and I didn't burst into full-on tears - progress? My eyes did well up, not totally cold and heartless, but no sobbing to strangers today. I did cry a lot but mostly when we were talking to one of the home care nurses (I totally forget the title) and we started talking about her hair. I feel like such a freak but this makes me cry every.single.time. It is freaking hair! It will grow back! I'm actually more worried, but that isn't the right word; about what color it will be when it does grow back. Please, I totally know - you don't need to say it.

I think there was one more thing but my mind is gone. Scattered - like sands in the hourglass or ashes in the wind - or lobsters in the sea ;) I just gave myself a little chuckle with that one. "I'm outta here!"

2011-01-17T21:54:00.003-08:00

Oh My Word.

Today has been good but it is so hard. So hard. We got home about 5:30 pm and Anna went straight to her room. She has been watching tv in her room since then, I set up the laptop with Despicable Me, she watches it on repeat. We brought her out to give her a quick bath - she is required to have a full bath at least daily now - and then popped her right back into bed.

The site where her cath sits - it is so red and swollen - and looks so miserable. I literally cannot look at it, it is so wrong, a giant lump is NOT to be visible *under* your child's chest. She keeps calling it her, "my surgery" or "my surgery on my privates." I was totally confused by the privates until she pointed at her chest. :)

Being home is great but it totally sucks! How contradictory, maybe I'm on the steroids for treatment. I'm totally freaked out, I'm going to do something wrong, she's going to get sick, we're going to bump her port, I'm going to give her the wrong med, feed her the wrong food, mis-dose her med, mix up something, she'll spike a fever - there is SO much to worry about.

I feel horrible and scared and out of my ever-loving mind. It is supposed to be healthier for Anna to be in our home germs than at the hospital. I probably spent half an hour tonight checking and rechecking and rechecking her meds and dosages again. I am utterly overwhelmed with the magnitude of this responsibility. Sam says it is a lot like bringing home a newborn.

This is worse - I was never this scared bringing either girl home. I felt reasonably confident that nothing I did was going to cause them serious harm or illness - I don't have that same confidence any more. I'm afraid to touch her or hug her because I don't want to give any bad germs to her. Or hurt her in any way. Did I cook her food properly, wash my hands enough, make Ella wash her hands enough... Horrific. Almost paralyzing. At the exact same time I just want to wrap myself around her tiny body and cocoon her and just hold her close to me and never let go - Anna, not being the cuddly type, this would never fly. "Momma, please quit hugging me." I try and avoid bothering her these days.

Tomorrow we go into clinic for our first outpatient visit. They'll do labs and probably give her at least more platelets, if not both blood and platelets. Her numbers were quite low today, again, totally expected but still unsettling. She got both blood and platelets early this morning with the expectation of going home today. So, for several hours on Tuesday and pretty much all day Thursday we are at Children's.

Thursday is Day8 - big day in ALL-land. Well, every Thursday is big dose chemo day but this Thursday is the treatment directly into her spine as well as the bone marrow biopsy. This Thursday determines the next course of her treatment based on the biopsy results.

OH - to add to all this - evidently for the first three days post chemo treatments she is kind of dangerous. Her fluids and body excrete chemo - now, I am HOPING that none of her therapies I have to mix up myself (sometimes families do have to mix the chemo themselves!) - I will probably have a nervous breakdown. I am also hoping that in the three day windows Ella doesn't get exposed to Anna's poisoned bodily fluids. So, if at any time we have to take Anna to the ER, we need to make certain they know she's chemo-positive or some other term. The normal gowns they wear while she was in ISO - nothing at all like the chemo gowns. They are longer, heavier, thicker, plasticky-er - and put into a special receptacle, to be incinerated. Excellent.

Sunday Night

2011-01-16T21:47:00.004-08:00

Anna had chemo today - they call it IM (means into muscle, but I don't know the technical term) and she was an amazing trooper!!!

Anna is getting another blood transfusion tonight, she had platelets today - it is amazing what new blood and platelets do for her energy and attitude. She becomes more of herself. Honestly, her attitude is phenomenal - she doesn't really remember the first few days here, not even sure if she remembers getting her cath. It is obviously not bothering her as she is currently sleeping on her right side - OH - she's asleep and it isn't midnight!!! Hooray!

She takes her meds even the yucky ones without too much complaining (when she's not in the midst of the steroid emotions.) :) Tonight dinner was cookie, berry cake, rice, corn, green beans, cheerios, ice cream, apple juice and pizza. Her table was pretty much all starch and carbs, the night nurse walked in, looked at her tray and said, "Oh, that's the prednisone dinner."

There are so many emotions back and forth back and forth - I feel like a ping pong ball - at Barnes and Noble with Ella today and lost it, totally started crying, totally embarassed Ella. Poor thing. We have spent some time together the last few days and I think she understands more of what we want for her. She gets that we want her to have fun and play and be with friends rather than just hang out in the hospital - she's been pretty much declining all offers from people b/c she wants to spend it with us. I told her people want to make her life fun and take care of her since Anna is being so spoiled (Ella has mentioned this several times!) - the people outside the hospital want to help maybe spoil her while we're taking care of Anna. tonight she's having a sleep-over with Grandpa and Nonna - from the pics it looks as if their house will never recover. She is also giving us the 'fake' happy and upbeat Ella - which I appreciate, but am sad that she feels she has to do it. Today she also told us to not explain to Anna about the chemotherapy being poison b/c she doesn't want Anna to worry about it. How sweet is she.

Anna bathed again today, her hair is still crazy, it will take forever to comb out. I am actually kind of regretting not cutting her hair short earlier in the year when she kept asking. Not b/c it would be any easier when it starts falling out...ubt maybe it wouldn't be such a huge shocking cahnge.

I'm hoping to have more good news tomorrow.

2011-01-16T21:47:00.001-08:00

Thanks for the text about blast counts Deana! - that is the number of cancer cells in 'some' unit of blood. For the rest of us, the blast count is zero. The fact that it has dropped over 100,000 points- I'm taking as a great sign! Even if it isn't, I'm still saying, in Anna's words, "YAY!"

Sam is planning to head back to work on Tuesday. I'm a little bit scared, especially when we take Anna home, but we don't have to boil the house :) I know know know everyone wants to help - I would not want anyone to be disappointed ;) Still don't know what I need or want, I'm going to look at some parents of cancer patient books (so glad you an't see me ugly cry while typing) and see what they recommend for help.

2011-01-16T10:07:00.001-08:00

Anna had a good night - she slept pretty solid from midnight to 8:30, we were up about 2, 4, 6 and 8:30 to go potty. At either the 4 or 6 wake-up she said, "Sorry to keep waking you up Mom." How sweet is this girl?!?!?

Day4 means PEGaspargase (PEG) - this goes into her thigh muscle. The really cool part about being here is that nothing painful or 'mean' is really done in their room. The kids go to a treatment room so their room is a safe-zone.

Before they can give her the PEG she needs more platelets so we are starting that transfusion right now.

Fall/Halloween Projects

2010-11-02T02:04:00.006-07:00

Lots of stuff going on the last few months. We are keeping incredibly busy and doing things that go along with the girls getting older - homework and soccer and playdates and trips and clubs and activities and just hanging out doing absolutely nothing planned!

We did so many fun things this summer and early fall and haven't really been taking our camera out and about - I don't remember everything we've done but I we've been to Leavenworth three, maybe four, times. The girls keep asking to go back :) Anna especially is LOVING the German food. :) We spent a few days in Seaside as an unexpected gift - totally amazing! It makes me a bit sad to not have the photos but I love being able to be totally present. I like the photos but I don't like trying to get shots and I definitely don't like toting the camera.

This month, or I guess, last month, we did a ton of crafting, the girls and I, and while I didn't get pictures of everything we made - I did take pics of some of it. The Halloween stuff is already packed away and I am so ready to start Christmas, but will hold off in deference to my sweet dear husband :)

I've also - probably waaay behind on this idea, started utilizing my favorites folder and keeping track of all the good recipes and cute crafts I come across. I have two folders: To Make and Recipes. I have found the cutest things that other people have thought up and I simply have to recreate them. Love it!

One of the most adorable things I have ever seen was these little silk flowers.

I made two of them, one in baby pinks and one in pale lavender and orchid. My flowers were terribly tiny because they were going onto newborn onesies. I didn't take pictures of mine :( But, trust me, they were too stinkin' cute! The one with the pink flower had a little scrapbooking washer that said, 'precious' with a small pearl in the middle. Ella designed that one, she loved that it said, "Precious Pearl" for this adorable new baby. The other one we used a silvery-colored metal 'O' - for Baby Olivia. I should ask her mom if she has any pictures. Rarely do I do a craft that I just love and this was one of those times.

Love It!

2010-04-21T23:03:00.003-07:00

Driving home with Ella and her little friend after a birthday party today.

Ella: I'm only going to invite girls to my birthday party.
Zoe: Well Ella, could you invite one boy.
Ella: Sure.
Me: Which boy would you invite?
Ella: Ian.
Zoe: Yeah!
Me: Ella do you like Ian?
Ella: Yes.
Zoe: He's my boyfriend.
Me: Do you have a boyfriend, Ella?
Ella: No.
Me: Do you want a boyfriend Ella?
Ella: Yes.
Me: (ACK!!! inside my head) Who do you want as your boyfriend?
Ella: Ian.
Zoe: But Ella, Ian's my boyfriend.
Me: Ella, do you mean boyfriend, or a boy who is a friend?
Ella: A boy who is a friend.
Me: (PHEW!!! inside my head) Well, I think Zoe is talking about a 'booooyyyyfriend' - do you want a boooooyyyyfriend?
Ella: No, just a boy who is a friend.
Zoe: Good, because Ian's mine! But, Ella, do you want babies? You have to have a boyfriend to have babies.
Ella: No.
Zoe: You don't want babies?
Me: (ACK!!! inside my head) Well, I think you need to have a husband before you can have a baby. (oh crap, hope her mom was married when she was born or her mom will think I'm totally judgemental. Stink!)
Me: Ella, do you want to have kids?
Ella: Yes.
Me: Zoe, Ella doesn't want to have babies.
Zoe: You don't want to have babies!?!?!??
Ella: No. My mom said I could 'adot' a kid. My mom said I could.
Zoe: You mean, 'adoP'.
Me: The word is actually 'adopT'
Ella: Well, I will adopT a kid, but not a baby.

An adorable conversation - with a bit of fear on my part. No talking about boyfriends and babies when you are FIVE!!!

Communication is Key

2010-04-20T12:20:00.002-07:00

Page 1:
wut I want for my brseday.
sum pgmas for my BildaBar
siprs for My BildaBar
for mor thaings
I want for my
brseday
Trn The Page

Page 2:
sum Clos for My
Bitty Babe.
Thas All I
want for my
BrThday
By-By

I'm the Only One Not Coping Well

2009-08-31T20:33:00.003-07:00

In twelve hours Ella will start her first day of kindergarten.

She's excited; nervous but over-the-top excited! Sam's excited for her, Anna's excited for her and I am excited for her. I'm just really not ready for this. I'm not ready for her to head to school even if it is only half-day. I'm not ready for her to have a different teacher - a teacher that isn't me. I worry she'll be bored, there won't be enough new and interesting and exciting and I worry that I won't be able to give her teacher a fair chance.

Sam has his theories on this - my favorite deals with me being a great natural teacher :)

So - here is a picture from October of 2004 and then a picture of October 2005 and then a picture from August 2009 - YIKES!!! It's Too Too Too Fast!!!!!!

October 8, 2004
(Ella's in the orange pants ;) )

A bit harder to keep them still the following year :)

June 28th, 2009

If it doesn't work out for some reason I'll just bring her home and do the schooling myself - I'm doing my very best to have a positive attitude!

What do you think of this?

2009-05-31T00:49:00.003-07:00

http://www.theatlantic.com/doc/200904/case-against-breastfeeding

This article has been out for a few weeks now. I find it fascinating and at the same time somewhat disturbing - kind of like a big practical joke played on Mothers but yet - I can't just take it at face value - seems too defeatist. Now I have something else to research - not that I have a reason to need this information but it is always good to know something new and really, this seems like, if it is even partially true, just another way of subjugating women. Maybe it's too late to be reading and responding to this and I'll have a better head after a few days of letting it percolate...

A thought - I'm thinking it might be disturbing b/c where I am, as a wife and mother - this is what 'good' moms do and so not to, the corollary - you aren't as good but if you are vested in being a good or better mom and then it turns out that it really isn't better or Best than there is one less thing to 'qualify' or quantify good mothers and really, how helpful is that in the Mommy Wars? ;)

ETA: As a sidenote, I found the origins of La Leche League, extremely amusing. What a difference a few decades makes :)

Think She's a Cute Baby?

2009-03-22T23:01:00.003-07:00

I do!

We ended up with enough votes for her to move onto Round 2 of this contest.

Please, if you wouldn't mind, go ahead and click this linky and sign up and vote, vote, vote for Miss Anna!

I wouldn't even care if you used all ten votes every day to vote for my sweet girl :)

OH! And before you ask, the day the photos were due was the day Sam managed to roll his truck...unfortunately I never managed to get back to upload an Ella photo.

Thanks!!!

ACK!

2009-02-15T12:04:00.003-08:00

We're buying a new house!!!

It's more than a little bit scary, especially with the current economic situation but we think it is a good move for our family (obviously)or we wouldn't be taking on this.

I pine for my old house while looking at new homes, but I love where we live now. I didn't love living there and we don't think a house is a good reason to stay someplace you don't want to be :) (Not sure that run-on even makes any sense!)

The Deets:
New house is officially Eastside ;) (although definition of East side depends on which side of the state you live) split level, 4 bedrooms/2.5 bath, smallish kitchen, smallish house but has all the things we wanted. A yard to play in but not so big we wouldn't take care of it, space for a *little* garden, three bedrooms and room for an office/scraproom and an additional space for a playroom. Plus there is a little swingset in the back yard - which may be replaced with a play structure in the near future depending on stability. The best part of this house that neither Sam and I are in love with - it is in an Amazing! Location. Seriously. Fabulous schools, great parks, good neighbors - all within walking distance. Sam is excited b/c every year they have a bridge building contest at the elementary school - one for students and parents AND one for parents :) It seems like a wonderful community and one of Sam's co-workers actually lives just a couple of blocks away and is the one who gave him the idea of looking there.

The house is currently owned by a bank, after foreclosure or something...not sure of the technicalities of it all except that the bank currently has owned it since at least April of last year so they want a fast closing. There is NO way we would be able to buy into this neighborhood if the house wasn't bank-owned and a spectacular deal. The house two doors down is currently listed for $80,000 more than what they were asking for ours!!! We decided that since we can't get the house we want and the location we want - we'll opt for the location and make the house 'ours' as the years go by... It is close enough to the city we can head over anytime for the ballet or the zoo or a game or whatever but far enough away to not deal with the traffic and the horror of the schools.

The sad parts about moving are A.) mainly being away from the grandparents - the girls love seeing them so frequently (and so do we :) ) and B.)being away from the two great-grandmas that are here that we don't visit nearly enough and C.) making friends and having to move - Again! Not just the girls but also the mom, not so much Sam as he's either working or commuting so he has no friends that live here - he'll be happier to be Eastside closer to his friends.

What's also really sad is that Sam's maternal grandma really really really wants to move back home - to this house - that we are living in. We visited her yesterday and just don't see how it's a possibility for her to live on her own. She asked us about the house because as she told us, in no uncertain terms, that as soon as we move out - she's moving back in - regardless of what anyone thinks. There are just a whole myriad of reasons why that shouldn't happen but it is sad because it is what she wants and without full-time care we can't see how that would happen. :(

Okay - and here are some pics:

Today was a good day.

2009-02-02T20:24:00.002-08:00

One of those days with pretty much everything going right :) I like those kinds of days. Happy Day.

Maybe you won't agree

2009-01-20T14:54:00.002-08:00

but I absolutely LOVE that my girl was thinking about how other people would feel.

Here's the scene, Ella and I are sitting on the couch. We are watching the inaguration speech, she's cuddled up just like I'm reading a book to her. She's totally enthralled listening to Obama speak and all of sudden pipes up with, "Mommy, it's okay, now people who voted for John McCain won't need to be sad anymore."

We haven't spoken of John McCain since probably November 5th so I was impressed she remembered but also impressed that she cared about what people think. I'm also really happy that she got enough good feelings from Obama's speech that she thinks people who voted for John McCain don't need to be sad anymore :)

Watch it Live

2009-01-19T23:13:00.002-08:00

Convo in the Car

2009-01-14T12:52:00.002-08:00

Maybe this'll be a new feature - bwahahaha - like I do anything regularly.

Bran: "Do you think we should have spaghetti for dinner?"
Anna: "Yeah, I want spaghetti with sausage. I want spaghetti, sausage and ice cream. I want spaghetti, sausage and ice cream at the restaurant. Spaghetti, sausage and ice cream at the Spaghetti Vac Tor Ee. Yeah, that's a good plan. Hey Mom, let's have dinner at the Spaghetti Vac Tor Ee. How do you say 'edamame' in Spanish?"

At which point we pulled up to the house and got out of the car. Fortunate timing for me as I have no idea how to say edamame in Spanish ;)

Maybe the post would be more accurately titled, "Monologue in the Car."

That one's a cutie too!

2009-01-07T23:12:00.003-08:00

Anna: "Can I have some of that 'geena'?"
Me: "What geena?"
Anna: "That geena drink we had."
Me: "Honey, I don't know what geena drink is?" (Ask Sam, he doesn't know.)
Anna: "That geena drink we had before?"
Me: "I don't know what geena drink is, when did we have it?" (Ask Ella, she doesn't know.)
Anna: "That Geena Drink We Have With Vegetables!!!"
Me (and Sam): ?!?!?!? "Geena drink we have with vegetables?"
Ella: "Yeah, can we have some of that?!"
Me (and Sam): ?!??!?! "Some of what?"
Anna: "That geena drink!"

At this point all four of us are completely exasperated - He and I because we have NO idea what they want, the girls because evidently their parents are just clueless morons...

thinking about geena, thinking about drinking with vegetables, thinking wth?

Lightbulb clicks on...

Me: "oooooh, you mean Orangina?"
Anna and Ella: "YES!"

...also makes more sense when you know we had cheese fondue, with vegetables, and Orangina for the girls on NYE. ;)

PAD

2009-01-03T21:05:00.007-08:00

In an effort to learn something new this year, and hold myself accountable I am starting a Photo A Day project. There are several variations on this but I just chose a Flickr group that several people I know were joining and started.

And...if my sweet husband ever reads this blog; it's almost Wednesday ;)

So - I am working on being a better photographer, taking better pictures, keeping a camera with me and documenting more of our day to day existence. With that in mind, and as it is January 3rd, I will post the first three days of the year's photos.

1/1/09 - Ella's newest 'big girl' activity - combing her own hair

1/2/09 - Miss Anna pretending to be sad.

1/3/09 - ftr - this one was set manually, lighting, exposure, focus - I'm sure it'll get better, this is an early attempt

Here was another one of Anna trying to look sad - one of my new favorites.

100th Post

2009-01-03T20:58:00.002-08:00

I know I already shared this story with some people but not everyone has heard it and as it makes me laugh and I think it is just adorable - I'm going to share it for my 100th blog post.

Ella: "Hey Mom, when I came out of your tummy and I was a girl it was a GREAT surprise right?"

Brandi: "Yes, it was a great surprise."

Ella: "Hey Mom, when I grow up and have a baby in my tummy it will be a great surprise too."

Brandi: "It will be a great surprise!"

Ella: "Yeah, but I will have to keep my eyes closed and not peek, right?"

Brandi: "Why can't you peek?"

Ella: "Well Mom, when God puts the baby in my tummy I have to close my eyes tight and not peek. Then when the baby is bigger and comes out of my tummy I will be SO Surprised!"

Way too many photos from our trip :)

2008-12-11T21:44:00.029-08:00

Leaving the hotel our first day.

Ella spent the trip obsessed with Alice, so much so that she wrote the name Alice in her autograph book and insisted we call her 'Alice' during the week. (keep in mind all these photos were not taken on the same day)

Anna spent her week obsessed with Tinkerbell. - here she is pointing to Tinkerbell :)

More to follow

2008-12-09T13:09:00.003-08:00

just so you know - had to re-type that title about 7 times before there were no misspelled words - just sayin'

Anyway - we had a Fabulous Time! The girls were amazing, Anna was sick for a couple of days, of course, but she still did so much better than either of us were anticipating! It was great being there for five days - no rushing around required but 5 days is definitely long.enough. Although this morning Anna asked, "Can we go to Disneyland today?" and I had to tell her, "No," she sobbed and sobbed.

I will have to upload pictures later - most of the photo and video from our trip are on Sam's computer b/c we didn't need to take two! The other, more pressing problem, is that my photo editing software is still in my old computer and not yet on the new one :( I've put up a couple of un-edited photos in the past month or so but man - it's almost like going out in public with make-up on...I think I just need to get over and post the ones I have! (That was for you Melissa.)The editing will be a 'let-go' - Happy Tuesday!

Day Before Turkey Day

2008-11-26T10:57:00.004-08:00

Feeling Very Grateful today.

Blessed and fortunate - truly such a wonderful life.

Feel free to add something you're grateful for...

and now some sweet pics of my two Biggest Blessings and Gifts:

Christmas Shopping

2008-11-12T20:14:00.002-08:00

I have another vent post - really nothing to do with my children or my family just a general purpose vent and maybe part of the reason it is easy to stay out of the classroom:

Okay - so if you know me IRL you know I don't really appreciate electronic/battery toys. We limit tv (except the last couple of days especially with all the sickness going on here!)videogames, computer time - I, We, really really try to limit their electronic media as it is more passive entertainment. It doesn't seem to allow kids to think as much and it sets up an expectation of their toys to entertain them, rather than using the toys as entertainment.

What brought this vent on you might ask: Alright, since you asked (or didn't)I'll tell you :) On a message board I frequent there have been several threads lately about Christmas gifts for children. Not necessarily even older children, kids identified as three and four year olds, that are getting one or two or multiple electronic toys for Christmas. I know that they can teach, both games and media and that is obstensibly their purpose - Ella's Favorite cartoon right now is SuperWhy! She loves it - loves the reading and the word play in the show - but I still limit her exposure, she's not allowed to watch every day or even every other day because I don't want reading to be a passive experience for her. I want her to actively participate in reading and learning, in the enjoyment of literature and have to work at reading and stretch herself.

I don't know if, yet again, I am being too micro-managing and over-protective but I feel it is way over the top to let electronics entertain our children! Come on - use puzzles, manipulatives, blocks, cups, playdoh, MoonSand, spoons, dolls, instruments, beads, stools, chairs, pillows - anything! Just let them play and use their imaginations!

And - so you all won't think I'm completely over the top, because of course, my kids do have some battery powered toys, in fact for Anna's second birthday we bought her a little keyboard that she loves! So, I'm not totally opposed to it but I think there should be limits especially for kids so young - 8, 9, 10, when they aren't playing with toys so much anymore - different situation. Kids that are 2, 3, 4 years old don't need so many electronic things 'teaching' them!

Here are examples - and lest you think I am making this up I can provide the link to the threads where these are discussed:
*one of the BEST investments I ever made for my preschoolers are the "Talking Letter Factory" DVD's by LeapFrog
*Leapster 2 and accessories
*a kid's camera (actually not so opposed to this one)
*Baby Alive
*My daughter is 4 and is getting a nintendo ds
*movies-max & ruby, dora, blues clues, wiggles, strawberry shortcake
*I still think the best item we have ever gotten has been a dvd player for the car (okay - now this one BUGS me, we have friends that let their 5 yo watch it just to and from school, three minutes away!)
*remote control car pack
*Tag Reading System and books for it/Games for Leapfrog Leapster/Maybe a board game or two(? really - maybe a board game - heck, if you have the first two you won't even have to spend time to play the board game with your child)
* dd (3), vtech digital camera/leapster games
*My dd is 4...a leapster with some games/digital camera/boom box/microphone/the new Tinkerbell movie
*she's 3 ...watching movies at night in her room

What do you think? I could go on and on and on! What actually started this was a mom, and I can't find the quote anymore, (stink!) but she had posted how she was going to buy her four-year-old son, a tv and a dvd player for his room!!! To which I replied, "My girls got together and decided to ask for a pink tv and a pink dvd player for their room - they are Not going to be getting those." Totally snarky and unnecesary as a response but come on - he's four - is this necessary or I am just being snotty?

This says it all...

2008-11-02T13:52:00.002-08:00

Our Girls :)

2008-11-02T13:51:00.004-08:00

Which picture? :)

"Cheese."

"Obama Girls!"

Who am I to disagree with Genius?

2008-10-17T13:05:00.004-07:00

I found this interesting being as we live in a highly technologically driven area: 61 Nobel laureates ...

If 61 of the best and the brighest scientists agree on something - who am I to disagree? ;)

I just have to let it out!

2008-10-16T10:04:00.004-07:00

ugh ugh ugh! again ugh!

So very tired of being told Sarah Palin represents Mothers. She represents no mother I know and honestly - flame away - with 5 children, one of whom is soon to be a mother and also one that is a special needs baby - I have to wonder if this is the right time for her to be seeking this political office. I know it is totally sexist because this would not be such an issue if she were a male candidate for VP - but she IS a woman. And she and her running mate, are so darned determined to paint her as a "hockey mom" - well - get yourself home, take care of your kids and watch them play hockey. Don't uproot them, move them across the country, into a huge city, send them into a tailspin and leave them to be raised by a nanny! (and in no way am I saying that mothers should not work - I just don't think this is the job for her at this time in her life and her children's lives.)

Drives me insane!

Oh, and thanks to the debate last night I now know that Sarah Palin knows all about Autism and other special needs children - when her child has Downs! Not at all the same as autism but thanks for playing McCain...

I also appreciate how John McCain calls me a pro-abortionist. I think this offends me more than anything else. Honestly - who is "Pro" abortion? I don't know anyone who thinks abortion is a good thing - which is what 'pro' means, that you are *for* abortion. I am absolutely not *For* abortion but, as in so many other things, this is a moral issue and should not be decided by politics and beliefs that are not my own. There are many many things that I think should not be regulated and morality is one of them.

And the fact that these yahoos really think it is in a child's/woman's/family's best interest to be forced to carry a child is beyond comprehension. If a 12 year old is impregnated by her father or someone else in her family you really think that it's a good thing she carries that baby? Really? What does that do to the psychological health of that poor child, not to mention her family. So now, not only does she have an *additional* daily reminder of what has been done to her she also has to deal with all the changes in her body, do all the attendant work that comes with carrying a child. She will also probably have to go to school and deal with the ridicule and/or judgement from her peers/church group/family - so she becomes even more disenfranchised than before. How does this make a good decision? How does the life of this young girl become secondary? Who benefits in this situation? Where is the greater good served?

Next Up:

My Daughter has more foreign policy experience than Palin.
WTH? She really *DID* say she can see Russia from her house! A.) that statement is so ludicris B.) that she actually think that gives her any insight into foreign policy with Vladimir Putin. The fact that she's tried to defend this statement - I have no words, just a very vehement eyeroll and head shake...

Many Many Many Months of Updates Following

2008-10-15T20:54:00.000-07:00

As I sit here, listening to the debates tonight, checking out friends' blogs, I realized that my blog header is from April. I'm thinking it's time to change it up.

I have NO idea where I left off with pictures - not checking just yet because I am not ready to do photos. Just ready to type.

I think things that may need to be caught up on:

Ella's Birthday
Anna's Birthday
Moving
Dragon Festival
School Starting
Potty Training
Pink!
Bran's Birthday
New Beds
Election
Ella's feet
Selling Our House!
My Blog is defunct because of Facebook ;)

Moving
The move was good - the city is small. I never realized what a small town this was - Literally, I can't go anywhere without seeing someone I've met since I've moved here. It's good - I feel much more connected but also strange. It kind of feels like being back in the 'hood in Seattle where I'd go to the grocery store and see my students and their parents and their families.

Dragon Festival
An Un-Official Family Reunion for Sam's Mom's side of the family. It was totally fun, lots of silliness, great to see Janet and Lynn and Becky and Mike and Darcie and Andy. Really really hard to see Becky as my heart breaks for her and to see her playing and talking with Anna is just so so tough - I don't know how she can.

Great-Grandma Mary
The girls have gotten to see Great Grandma quite a few times since we've been here. They get to go with Sam and visit her, usually while I take a nap or clean house on a Sunday afternoon. It's a nice little break from kids for me and they get to develop a relationship with someone else in the family. Always good!!!

School Updates

2008-10-15T20:52:00.002-07:00

School!
We searched high and low for a pre-school for Ella. It was really quite a challenge, we looked and looked for a school. We toured several pre-schools over a couple of days looking for a good fit for Ella. I was feeling incredibly frustrated because even the pre-K programs were teaching things like colors and letters. Well, our darling daughter already knows her colors and letters and is actually doing great reading and starting to write - We didn't want her to spend September learning circle, red and A, B, and C.

So, we ended up looking for a Montessori school - we found one that was so expensive! It has a great repuation, fabulous skills, excellent teachers - But! - as we left the school I told Sam, "She wouldn't get a hug there." He was like, "WTH? Why does she need a hug? She's going to have great learning experiences." So, then we went to the 2nd Montessori school and has we left he said, "I see what you mean." So, we went with school #2 - which she is LOVING! and it has the added bonus of being a two minute drive away.

Now, here with school starting, Miss Anna wants to go to school as well. She sat with us twice a month through Joy School last year and knows she's a big girl ;) So, I offered her a carrot, I mean, "Hey, she just turned two - this will Never Work." I told Anna that if she went pee in the potty she could go to pre-school. So she did and wanted to go to school. It was devastating seeing those big blue eyes filled with tears because she's so sad she can't go to school. I had to explain she had to do it more than once. We have to be all done with diapers before she can go to preschool. So she did. At the beginning of September she went having gone in the potty seat maybe 5 times to going all the time! Now, the middle of October she's been sleeping without a diaper for about two weeks. Shocking! Wonderful! But shocking! I LOVE IT! I haven't bought diapers or wipes since August :) I actually have a box of diapers and a box of pull-ups that I need to return that have never been opened - I was so not prepared!

Birthday Updates

2008-10-15T20:47:00.001-07:00

Ella's Birthday
Ella ended up having 2 parties - one before we moved, one after we moved. The plan was just to have one with her friends before we moved. But then, Missy decided she wanted to have Hayley and Ainsley at her party. Of course, that means their parents ;) But being five minutes away from her grandparents, that got to be less of a get together but more of an unplanned party - with cupcakes and everything :)

Anna's Birthday
Anna turned TWO in August. She's such an amazing little girl! I cannot believe she'll be twenty-six months in two days - Happy/Sad at the same time. I made a cute cake a Cinderella Barbie cake. She looked pretty but the morning of the party Einstein decided to eat some of my last fondant so the front of the dress, the part not yet made, had to be re-done at the last minute and wasn't as pretty as I'd wanted it. The girls loved it!

Pink!
I finally had my hair dyed pink - Hot Pink! I wasn't so sure of the color but after waiting for 10 years I finally did it - can I just say, I love it!!! It was my own birthday present to myself :)

Birthday
Then for my birthday I got more shocks! Sam had set up, on his own, to go out to dinner on my actual birthday with Allen and Marianne. It was totally fun and a good time. Then when we got home he had presents from he and the girls! Presents?!?! From Sam?!??!? But, this is not where the fun ends. On Sunday we were headed over to his parents' house again to play games. Longish story shorter - we get there and the table is all set - but for like 15 people - not just the six of us. I asked, "Who's coming?" Thinking they might be having company for dinner or something. Then Melissa's head pops around the corner and she says, "We Are!" and they were there along with Jo and Rick. I was stunned. Literally speechless! So very unlike Sam and I'd spent Saturday with Mel and she never said a word! I gotta say, this beats Chicken Stock and IOUs :)

More Updates

2008-10-15T20:46:00.000-07:00

Beds
With Anna going potty at night and potty training herself it quickly became evident that having her in a crib is no longer an option. We took the rail off her crib because it converts to a bed. This was much too high for her to sleep in and the bed rail is somewhere lost in storage. So the girls traded beds - Ella got a grown-up 'daybed' and Anna has the 'toddler' bed - Ella was all over not having the toddler bed anymore :) It's been great! In fact, just the other night Anna got up and came and found Sam, "Dad, I need to go potty," at like 4:30 in the morning. The only issue now is that Anna get herself up onto the toilet - then she wouldn't even have to wake us up!

Selling the House
We sold our house! We sold our House!!! It felt so great! We had a super quick close, I think two weeks - of course we lost money from when we bought it two years ago but we are in a much better place now. We are closer to family, reconnecting with friends, making new friends - only real problem is Sam's commute. We went shopping, booked a trip, put money into savings and now are saving up money for a down payment as we surely don't have one after buying and selling a house in two years.

Election Fear 2008

2008-10-15T20:43:00.002-07:00

UGH! No question that Sam and I frequently find ourselves on the more liberal side of the political spectrum. That being said, I can live with John McCain as president - there are some things that I strongly disagree with him on but I do feel he is somewhat of a moderate. I'm debating (ha ha) going further in-depth with my reasons in the next couple of weeks.

The problem I have with McCain however, is Sarah Palin! Really!?!? She's a working mom? She's a role model of a mom? She represents Moms?!?!? Let me tell you - she does NOT represent me! I cannot stand her politics and her policies and it scares me to death what it means for the future of my children, and yours, because there is a 14% chance that she will be president by 2011 - even higher by 2012! Holy Freak!

Ella's Feet

2008-10-15T20:41:00.001-07:00

Ella is back in casts this week. It's been a very hard transition for her - much harder than usual and she's actually been in quite a lot of pain which is really hard to see. She says, and I believe her, that these casts hurt much worse than her broken leg :(

The bigger news about her feet and legs is that she's okay!
We've had a little scare this past month or so and have been kind of quiet about it to the family because we just don't want everyone to worry unnecessarily. Here's the gist: In July when Ella broke her leg her normal orthopedic surgeon did not see her. He did, however, see her x-rays and saw something on it that he didn't think looked right - I believe I've talked about this part before - so she had another set of x-rays and a blood draw. The blood draw was fine, no infection in her bone.

In September we were back for her regular 6 month check and I mentioned that she is still complaining that her foot and leg hurt from when she broke it in July. He thought that wasn't right so he ordered another full set of x-rays (this is now the 6th set since July!) and noticed a tumor on her leg, behind her knee. He was pretty sure it wasn't cancerous but ordered a CT scan for her.

We tried to put it out of our minds and finally took her back this Monday. Her CT scan shows that she does have a tumor but it is not cancerous and it is very similar to a bone spur. I can deal with a bone spur. Hers is unusual in that A.) she's a female, B.)it grew rather quickly between July and September, C.) where it is located and D.) her age. So we will be watching this closely and sometime in the future depending on the size and location it may have to be removed but for today it is all Wonderful!

Facebook is detrimental to my blogging

2008-10-15T20:38:00.001-07:00

I'm not so much blogging regularly, not that I ever really did it regularly, but even less so now as I'm doing little soundbites ;) for Facebook. I find myself checking in at least a couple of times a day and I'm loving reconnecting with friends from the past. So, I will try and post more pics here but the daily minutae will still end up on FB.

I think that's all...

2 quick things

2008-10-01T11:41:00.003-07:00

I know I have tons to share but there are two things I want to share with the three of you that read regularly ;)

1. Please visit a friend's page on Caring Bridge and join your voices in prayer with others. If this link doesn't work you can go to caringbridge.com and do a search for 'generay' and you can read his wife Karin's postings about his struggles.

2. I have joined a group called 29 Days of Giving. There is no monetary requirement, no time commitment, nothing concrete expected at all. Your only task is to give something every day for 29 days. Kind of like Pay it Forward back in the day ;)

Have a great day! I will try and get more posts and pics up soon.

Ever wonder what babies dream about?

2008-07-31T10:10:00.002-07:00

Well, Sam and I do. Have quite frequently actually, mostly when the girls have had a bad dream. What makes a sleeping baby wake up from a previously sound sleep screaming and unconsolable?

Ella did it pretty frequently a couple of years ago and she'd just tell us she was scared. I seem to remember one time she said something about a monkey. Oh, and she used to have nightmares about that stinkin' dolphin! grrr...

Anyway, Anna had a bad dream the other night. And, while there are lots of good and great things (and some not so good, like intentionally tormenting your sister while driving) that come with children who are very verbal early on - this has got to be one of the best. She's not quite two and lately it seems always has some choice words for us.

Back to the dream: Anna wakes up screaming, inconsolable - Sam is unable to comfort her for several minutes, she doesn't want her blankets, her pacifier, milk - anything at all! She's just screaming at the top of her lungs. Finally I go in, which is usually less than helpful at 2 am, and I try to give her her blankets and her pacifier. She promptly throws them away screaming, "NO NO NO!!!" I finally figure out she's yelling, "I pooped!" Oh, okay, so we lay her on the floor and while I'm changing her diaper, that is totally NOT dirty, Sam hands her her blanket again. Again, she throws it off and starts screaming again. We are so confused and have no idea what to do now.

Then we hear these words of wisdom, "NO blankie! It's messy!!! Don't make me messy! I poop on blankie! No pacifier! It's messy! I poop on pacifier!!!"

Oh my goodness, it took everything we had to not burst out laughing right then and there - she actually had a dream - as far as we can figure - about pooping on her things. She couldn't have them because they were poopy. I almost died. Laughing so hard as soon as we got her back into bed we couldn't even get back to sleep.

And there's your happy poop thought for the day. You are welcome. I truly hope you find this as amusing as we did ;)

***I'm adding this other poop piece b/c this is probably the first and last time I will EVER talk about poo on my blog again. Truly - Kind of can't believe how many times I've typed the word today. Little bit mortified actually now that I'm thinking of it. But truly, the story needed to be shared. Good thing for talking babies, huh?
- This past week Anna has pooped on the potty twice and peed in it once! Yay!!! I know we still have a long way to go but there is hope. It's a long way from, "Anna do you wanna pee in the potty?" "Noooo, that's silly!"

Fun Little Game

2008-07-21T14:33:00.001-07:00

I got this from our friend Mandy's blog.

Here is a fun little game...Leave a comment on my blog of a memory that you and I have had together. It doesn't matter if you've known me for a short time, or a long time, anything you remember.

Next, re-post these instructions on your blog and see how many people leave a memory about you. It's actually pretty funny to see the responses. If you leave a memory about me, I'll assume you're playing the game and I'll come to your blog and leave one about you....

One more little update

2008-07-09T09:27:00.002-07:00

On Tuesday Sam got a call from Ella's dr. that he wanted her to come back in for some More x-rays and bloodwork to see if she has an infection because something on her x-ray looks, 'off'.

This morning her PA called me and said the bloodwork looks perfect and they are still waiting to discuss her x-rays.

PHEW!!! No infection in her bone. Always a good thing. No infection they can find.

Now just waiting to hear her x-rays are great too :)

File under "More Information that Would Have Been Helpful!"

2008-07-09T09:24:00.002-07:00

On Tuesday we were getting ready to head back to the hospital for more tests (more on that on a different post).

I ask Ella does her leg hurt, where does it hurt, does she need any medicine, etc. She looks at me, touches her leg and says, "My leg is broken right behind my knee."

WHAT!??!? Come on now - couldn't you have told us that three, four days ago?!!?!? Silly little thing.

Hey Mom, I broke a bone in my skeleton!!!

2008-07-07T20:22:00.002-07:00

...aaannnd, yes, she did.

Her left tibia to be exact. We're not exactly sure when (June 30, July 1?) but I'm pretty positive I know the where (my bed) and the how (jumping). Remember the book, "No more monkeys jumping on the bed." Yep. That would be our darling daughter Ella.

To top off this fun story - It is now a week later and she got a cast for said broken tibia today!

Why would we wait a week to take care of a broken limb on Darling Daughter Ella?!?!? What kind of horrible parents are we??!??!

Hmmm... a quick recap.

Monday or Tuesday - jumping on the bed. Ella stops jumping and holds her knee for a couple of seconds. She steps down off the bed and goes to play something else.

Wednesday - B, E and A spend several hours walking around the zoo.

Thursday - Shopping for 4th of July food for the masses and fireworks

Friday - playing with Hayley and Ainsley, running around all day. Starts walking kind of funny, gets progressively worse as the evening progresses. Never complains or says she got hurt - even when we asked her.

Friday Night - wants carried and not to walk

Saturday Morning - can't stand up to get out of bed but of course, is still trying to walk. We, being the concerned parents we are, and being totally paranoid about this child's feet in particular - rush around making arrangements to take her to the ER and drop baby sister off with Dan and Melissa.

Saturday Morning - wait at the ER

Saturday Afternoon - ER doc checks Ella out, localizes the pain to a specific! spot on her ankle that has pain and tenderness, slight swelling. Ella off to x-rays. There are no signs of a break in her ankle. Oh, but wait, there is a spot on her ankle that shows up as an empty space. Typically this empty space is "this big" but it is somewhat larger on her film. They don't know if this is because her feet are the way they are or if it is indicative of a broken ankle. Basically, they call it a sprain, give her a walking boot, but tell her to not put weight on it (yeah right) and tell us to call back on Monday.

Saturday Night - playing with H. and A. and A. - crawling all over the house, up and down the stairs, not a care in the world.

Sunday - still can't walk on it, still sensitive although she tells us it isn't

Monday - "No, it doesn't hurt." Can you stand on it? "Um, I can stand on it but you hold my hand to help me." Really, she can't stand on it at all - zero weight.

Monday Afternoon - P.A. comes in and checks Ella's leg and foot - exactly the same poking and prodding as the ER doc on Saturday. She looks at Ella for approximately 27.8 seconds and says, "I'll bet you money it's her tibia not her ankle." Evidently, not through wincing or pulling or pushing or straining or whimpering or crying, she told the dr. where her leg actually hurt. How did this dr. know where Ella's leg hurt with no visible signs you might ask. Hmmm...Let's see - Ella looked up at her with 'opened' eyes. How amazing of a doctoring skill is that?!??! I'm totally impressed.

Monday Afternoon - we pop Ella into x-ray. Go back to the room to wait 15-20 minutes for her films to be read and in approximately 3.2 minutes she walks back into the room and tells me she'll need a cast because she has a broken tibia.

Oh yeah, that jumping on the bed thing, holding her knee LAST week, she broke her leg. Never said ONE word about it - AT ALL. She is one tough cookie!!!

I tell her that she will be in a full cast, toes to hip - a really long big cast. Her reply? "Mom, do I get a big long cast because my leg hurts up high?" Interesting. That information would have been helpful Several days ago ;)

Now she's into a Full Leg, Hot Pink cast. All the rage. Very Cool. Very Styling. Very Summer - well, except for the heat and the water part of summer. I shall try and take a picture tomorrow. It really is kind of cool looking.

On the drive home from the Dr. office we were talking about her broken leg, "Hey Mom, I broke a bone in my skeleton!!!" Needless to say, one of us thought this was much cooler than the other.

And We're Off...

2008-06-19T20:54:00.004-07:00

Kind of feeling melancholy about the whole move thing all of a sudden. Still thrilled to be moving but we have made some great new friends here, reconnected with old friends - and that has been wonderful! Tomorrow 'Big Girl Baby' (her sister calls her that) and I are flying out and then on Saturday Sam and Ella (ha ha ha) are heading over with Grandpa.

I'm feeling a lot of love all of a sudden - from both sides and that's a great feeling. I am sad that these tiny roots that the girls have formed are being moved and I know they'll rebound - I'm not at all worried but still a little saddened that things happened this way.

Lately the PEPS emails have been flying - which has been much more my home, even away, than my new MOMS club is while being here. It will all be good - I just wish we would have had longer to make our friendships stronger - although that probably would make it even harder to leave.

I've talked to a couple of friends from when I was teaching - Totally out of the blue - maybe some sort of universal "welcome back" or something - whatever it is, I'll take it! Rick and Mel have both mentioned plans for the 4th, Ella is signed up for Ballet, a couple of the PEPS moms want to know if she'll join swim lessons with them - evidently it is quite the thing for the 4 year old set. I got some information, unsolicited, about a pre-school we are considering - all at once things are coming our way.

Today the girls spent the afternoon with Shelby. She is the Most Amazing Young Woman! Seriously - Sam and I wonder what our lives would have been like if we were even 1/2 as put together at 16 as she is. This summer she's off for a month in Europe - we tried to convince her to move with us...Silly girl won't agree ;) The girls had a wonderful time with her - as usual and she had a wonderful time with them. I love this sitter who takes delight in the things my kids do - she thinks they are almost as wonderful as I do :D Plus, she totally lets me know the 'right' way to text!

So, off to the other side. Wish us luck in a quick and easy move!!!