First World Problems

Standard

IMG_2613“My iPad 3 doesn’t warm my lap as much as my MacBook Pro.”

“I want to enjoy my beer in the garden but the wifi doesn’t work out there.”

“I type so fast that my expensive fake nails keep hitting the wrong keys.”

“I went to go babysit for an hour and the kids didn’t know what their own wi-fi password was.”

“I cant find the right balance between my fan and my electric blanket.”

“My au pair and my gardener are socializing too much. What should I do?”

“I have to turn down the bass in my car to look in the rear view mirror.”

“I don’t have enough chips for my dip, but if I open another packet of chips, I won’t have enough dip for my chips.”

“I tried to unlock the wrong Prius today. Twice.”

“I accidentally gave a homeless man a Euro coin. I was going to use that on my trip to Vienna next week.”

“The checkout guy at Whole Foods didn’t think it was funny when I asked if they accepted foodie stamps.”

Yesterday marked Allistaire’s 100th consecutive inpatient day.  Allistaire’s bill from her days on Hem/Onc service (2/25/13 to 5/28/13) is $1,251,124.25.  The bill for her time so far on the bone marrow team is $127,469.60.  If you add in the cost of her first time being treated for AML, which was $1,549,000, the grand total is:

$2,927,594.00

She hasn’t even had her transplant yet!!!!  And – she is only ONE child!!!  Can you imagine the cost of caring for the kids just here at Seattle Children’s with cancer?!  I ask all the time why can’t they just take Allistaire’s cancer cells and let them duke it out with various chemos in the lab before we have to dump all this junk in her body – hoping it works – hoping it doesn’t kill her in the process.  “We’re working on that,” is usually the response.

Now wouldn’t it be SO awesome if we could put a whole bunch more money into pediatric cancer research up front that would both save a whole lot of money in the long run and also much more effectively save far more children’s lives, without crippling them in the process?

If you haven’t already, please consider supporting me in Obliteride – a bike ride this August to raise funds for cancer research at Fred Hutchinson.  The clinical study for transplant that Allistaire has the gift of participating in is through Fred Hutch and 100% of funds raised go to cancer research.  Click HERE to connect to my Obliteride page to donate.

Another really great way to specifically contribute to the advancement of pediatric cancer research is to give to the Ben Towne Foundation whose mission is to, “accelerate the pace of pediatric cancer research – changing the way childhood cancers are treated and cured.”  Ben Towne was a little 3-year-old boy who was treated at Seattle Children’s and died of neuroblastoma.  His parents were determined to try to help things look different for other kids – 100% of donations go directly to funding pediatric cancer research.

Every single day Allistaire has another day to fight for her life is PURE GIFT!  Many of you have heard this before, but I tell you it has left such a deep gouge in my heart – I asked the doctor how long Allistaire would have lived with a Hematocrit of 9, and she calmly replied, “2 to 3 days.”  I will never forget that moment when I realized so clearly that if I lived in another country – if I was a Haitian mom, I would simply have a dead child.  If I lived 100 years ago, I would simply have a dead child.  Having your child die is one of the most common human experiences – until now, until here in this first world nation.  I get that there is an almost absurdity to the lengths we are going to save Allistaire.  There is a way in which perhaps we should be more accepting of death.  On the other hand – what in the world?  We live in this crazy, amazing point in history where I can see a picture – not a drawing – but an actual real picture of my child’s chromosomes.  The doctor’s finger glides across the page and shows me where one chromosome broke off and that little piece joined another.  We know so much and we know so little.  It is a glorious time to be alive and all, ALL GIFT!

Today Allistaire’s blasts are 10!  Yesterday we got word that the bone marrow donor has been medically cleared to donate.  Allistaire is negative for ALL viruses – no rhino virus – NO RSV!  On Thursday we will have the, “Data Review Conference,” and I will sign consent for Allistaire to have a bone marrow transplant.  Monday she will be registered.  Tuesday she will have her last day of radiation and on Wednesday she will take the first step of the actual transplant process – she will begin conditioning!

AND – Allistaire walked yesterday evening!  After her nap we picked up Burger Master and went to Magnuson Park.  I wheeled her stroller over the grass to the spot we like to sit and the girls have always loved throwing rocks in the water.  While JoMarie, Solveig and I sat on the blanket, Allistaire rose up out of her stroller and with slow, tentative, shaky steps walked to the water and began picking up rocks to throw in.  She walked and stood for at least 10 minutes.  Today at the zoo she walked and walked and walked – still far from her original strength and balance, but amazing! (And fear not, I’ll eventually get some video up for all to enjoy)

Praise the Lord, Praise the Lord – Father in heaven – thank you for every open door and every gift – for a warm evening, for two sisters together, for the lure of rock and water, for leg muscles and for will of spirit – thank you for helping Allistaire rise up and walk!

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12 responses »

  1. Oh praise God for those moments spent throwing rocks by the water! And for time together as sisters! Rejoicing with you, Jai!

  2. Oh these pictures make my heart sing. Precious sister power. I think we have a mission to pursue together to make that chemosensitivity testing a reality. I talked with Sten about it tonight. Thank you for raising money for Obliteride too. I’ll say it a million times over – you’re amazing. Happy birthday – you are a gift!

  3. Praise God! I just shed tears when you said, “she walked!” God is still the ultimate healer, no matter how much money we spend on medicine and things to make our children well. If it’s HIS will to make her continue living, HE CAN DO IT! I have to share with you my devotion today from “Jesus Calling – 365 Devotions for Kids” and it’s titled
    “You Will Find Me”
    The heavens declare the glory of God; the skies proclaim the work of his hands. Psalms 19:1

    The vastness of the heavens declare the vastness of My Being. The rock-solid mountains tell you that I am a God who is rock-solid and does not change. The thousands details of even the tiniest wildflower are to help you remember that I know every detail of your life. And the depths of the ocean are to remind you of the depths of My Love.

  4. Yay! Keep those great numbers coming! You got this, girl! Transplant day is finally coming. Congrats. Sending thoughts and prayers, and more prayers your way.

  5. Though I haven’t met you, I want to let you know that my family is praying for Allistaire and that reading your posts makes me hurry home from work quicker to hug my daughter tighter. Thanks for your openness- your family’s trust in the Lord and his sovereignty impacts our family deeply.

  6. So glad she is doing so well. Will pray for her continued strength to be able to go through the transplant. So nice to see the sisters together and Jennifer I just wanted to tell you everytime I see your picture I see your mother when we were in Connecicut. Keeping you in our prayers. Pam

  7. Wow, Jai, you and I are on the same wavelength this evening! Amazing; I wrote my own post *before* coming over here to see if there was anything new…

    It was so good to see Allistaire WALKING into the Ronald McDonald house today….and to meet some more members of your beautiful family (thanks, Solveig, for sharing your grandma with me for a few minutes!)

    We keep praying for everything to hold steady over the weekend and await the news of her official registration for transplant on Monday.

  8. Praise God, ! Great news…. I am crying tears of joy with you at this news…
    I am making cookies to send out that way…. I hope to bake them this weekend and get them in the mail Monday…

  9. Praise God from whom all BLESSINGS flow!!!! We continue to keep your amazing family in our prayers. Such darling and loving pictures!!!

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