I think we’ve been here before…

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IMG_1485IMG_1487One week ago, I was putting Solveig Kailen, my sweet little love, to sleep – for the last time, in a long time.  I lay in the dark next to her, telling her I loved her and wishing I’d had more time to be a good mom to her, wishing for more time to listen to her read and watch her expressions as she enthusiastically describes the events of the day.  I lay there wondering if the sound of two sweet sisters, giggling and running would bless our house again.  The thought of her alone, without her sister, is one of the heaviest weights on my heart.

This afternoon, I lay beside Allistaire in her big girl bed in the hospital room.  I lay in the partial light; the sound of voices and machines outside the window facing the hallway.  The cardboard birds hung still from the ceiling.  The bright fish swim suspended in the blue stream on the wall behind the bed.  How many days and how many nights have I dwelt in this room?  Seventy-five days and seventy-five nights?  Allistaire lived in this room for three out of her four rounds of chemo.  I knew exactly how to arrange her clothes in the drawers and what switches turned on what lights.  I know most of the nurses.  I know how to navigate this world.  It is all so surreal, so familiar, so known.  Internal conflict shifts and moves and shoves.  My impulse is to push back and resist this familiarity.  To give into it, to be lulled into its rhythms, somehow feels like acceptance, feels like approval, feels like betrayal.  Part of me rages that I know the things I know, that I am without shock, that I can so easily and simply slip back into this world.  Part of me doesn’t stop thanking God for all the faces that have expressed sorrow for our reason for being back, and joy for my girl.  Part of me knows embrace and kindness from mouths that can say, “she’s gotten so big, listen to her talk.”  It hurts and soothes simultaneously to be surrounded by people who love your child because they know your child because they have spent countless hours caring for them.

For the last three days Sten has stayed with Allistaire in the hospital while I have been hurriedly trying to set up our world here.  Two trips to Target have enabled me to get situated in my new room at the Ronald McDonald House – a name I hate and hence forth will always refer to as, “The Ron Don,” as everyone here calls it.  There is a bit of food in the mini-fridge and in the little locked cabinet, sheets on the bed and clothes unpacked.  I purchased glass containers for Allistaire’s hospital room in which to heat up food and oatmeal and dish soap and extension cords – all the little things that make life lived in a hospital function a bit better.  I talked with the folks from “Side-by-Side,” a volunteer ministry of University Presbyterian Church, to get Allistaire a great volunteer who can be consistently paired with her.  I’ve talked with the social worker and the child-life specialist and the transition nurse about what home-care services we want to use this time around.  I called up Carrie, our financial counselor to figure out how all this luxury will be paid for.  I thank the Lord for all who have given to this amazing institution that is directly making it possible for Allistaire to recieve the care she will have.  We qualify for the hospital’s compensated care program which from our side acts like a secondary insurance.  The hospital is able to write-off whatever the difference is between what the insurance pays and what the actual bill is.  What an inconceivable burden, and impossible burden this would be if there was no such program made possible by incredible generosity.

In addition to all these logistical issues, Allistaire has had test after test to get base-line data prior to beginning her treatment.  Yesterday we received the results of her bone marrow biopsy and lumbar puncture.  She has 1.1% leukemic blasts in her marrow as compared to 21% at diagnosis last time.  I wanted to take comfort in this wee little number, but Dr. Pollard says that the percentage at this point is not  very significant, rather, it is most important how well the cancer cells respond to chemo.  The one good thing about this low number, however, is that her “tumor load,” is not very high which means that when the chemo takes effect the, “tumor lysis,” which is essentially the cancer cells spewing their nasty guts into Allistaire’s blood stream, is not likely to be very great.  Tumor lysis itself, if in too large an amount or not planned for with massive fluid intake, can cause severe organ damage and even death.  Also, while her blood counts have begun to drop, her ANC is still in the normal range so far which means she has protection against infection until the chemo hits and makes all of her counts drop drastically.  Today her hematocrit was 32.3, platelets 191, white blood cells 4 and her ANC 1420.  We can also rejoice that there is no cancer in her spinal fluid and her cancer cells did not mutate into FLT3 which can happen on rare occasions.  Some of you may remember that FLT3 is an awful mutation that makes the cancer cells divide at staggering speed.  There are still a few more cytogenetic tests that will take another week to come back, but so far it seems no mutations have occurred that worsen her prognosis further.  Unlike before, however, it is clear from Allistaire’s CT scan that she has lymphadenopathy which is just swollen lymph nodes but the cause of this is that the leukemia cells are in her lymphatic system and is evidence that her body is trying to fight it off.  The CT scan also shows a sort of spreading around the area of Allistaire’s biopsy on her back.  Dr. Pollard says that this could be infection, though it does not look like it to her, or it could be that the tissue is agitated and attempting to heal from where the biopsy was done, or it could be her leukemia cells spreading out into the skin.  Initially, hearing affirmation of the cancer being in other parts of Allistaire’s body is frightening, but Dr. Pollard emphasized that usually leukemia in these locations responds really well to chemo.  Once she has completed this round of chemo and her blood counts begin to sufficiently recover, she will have another bone marrow test, lumbar puncture and possibly biopsies of her back and lymph nodes to see if the cancer cells are dead there.  All of these tests together will tell us if Allistaire is in remission and ready to go to transplant.

Tonight Allistaire began her treatment for cancer, again.  It has begun with a shot and tomorrow will start the chemo.  I hope to give more details about her actual treatment in the next few days.  Her little body is wounded and so scarred.  Her back is still scabby red and healing from her biopsy.  There are two puncture wounds above her hips from the bone marrow biopsy and lumbar puncture.  There is a tiny cut into her neck where they insert one end of her Hickman Catheter to connect it to her artery and another larger hole in her chest where the lines, or “tubies,” as we call them, hang down.  There are two old scars from her first Hickman.  Do you think all this has gotten her down?  No way!  That sister is a wild cat.  She is sassy and sometimes down right rude but full of vigor and gusto.  She rides and rides the bikes and sweats like crazy under her helmet.  She goes down to Piper’s room and stands in the doorway to ask if Piper wants to ride bikes with her.  She tells the nurses she wants crackers and juice.  As before, she loves to help clean her tubies with the alcohol wipes.  It seems that even for her, this is familiar, this is known.

Here are two pictures of Allistaire on the bikes – one from the first time and the other from yesterday:

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6 responses »

  1. Prayers and hugs to you as you walk through this. I think of you, Sten, Allistaire and Solveig throughout the day and utter a prayer for you all.

    “The Lord is good,
    a refuge in times of trouble.
    He cares for those who trust in him.”
    Nahum 1:7

  2. I was listening to it this song this morning, and was thinking of you. I hope it encourages you.

    Here are the lyrics:

    You know me and I know You
    You’re the God who calms all my storms
    You’re the voice inside my head

    Don’t give up
    Don’t let go
    Don’t lose trust
    Don’t lose hope

    You can have all my fears, God
    You can have all my sins
    You can have all my weakness
    I know you’re with me to the very end

    I still believe there’s nothing more beautiful than the love you have for me.
    I still believe there’s nothing more beautiful than the love you have for me, God.

  3. Oh Jai, we are praying for you guys. My heart hurts each day for ya! You are a pretty amazing mama and little Allistare seems like the coolest kid ever.

  4. Your family lays heavy on my heart Jai! Thank you for the update ~ Jen

    “For in the day of trouble he will keep me safe in his dwelling; he will hide me in the shelter of his sacred tent and set me high upon a rock.” Psalm 27:5

  5. Jai- I know you are overwhelmed – maybe even from the ppl wanting to come and visit and you trying to manage it all. I am coming to Seattle this week. Can I come and bring you goods? I want to help in many areas and was hoping I can meet with you to hug and pray for you and do whatever I can. You can email me or call me or personal message me with your number so I can get ahold of you. Here is my email and number 360-303-3827, email rhondaroosma@gmail.com. Praying so much!!!

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