Here are the details

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Ohh HGTV (Home & Garden Televsion), the perks of being in a hotel.  Okay, let’s be real, I SO don’t want to be in a hotel right now.  I want to be in my own house, watching Allistaire toddle about and watch what she does when she sees her room and welcome home Sten after a day at work.  I oddly think I might feel more confined here than being in the hospital.  Sleep is definitely better here but once you’re awake, there’s not a whole lot to do.  I’m just hoping we don’t spend all of our time away in this room.

You know what I’m just realizing?  How quick and easy it is to fall back into old patterns.  Here I am grumbling about being in a hotel, about the fact that I can’t go home, about the fact that things have once again turned out different than I thought they would, different than I want them to be.  What irony.  Haven’t I just experienced 40 days of things not going how I want and learning that I need to entrust it ALL to the Lord, to look expectantly for what He is doing – despite the fact that it’s different from what I think would be great?  Haven’t I thanked God for beginning to teach me to be fully present in the moment and to release my clutching control and be at rest in what the Lord has for me?  After all that has happened you would think I would have gotten the memo that I am not in control AND that’s okay, because God IS in control!  It’s laughable really.  Allistaire fell off the little bike just minutes before we were supposed to leave the hospital.  I was telling her to get off because she didn’t have her helmet and plunk, she fell off and hit the back of her head.  We had to wait for a doctor to come examine her and the nurse had to fill out an incident report.  We were at least an hour delayed in leaving.  Then we couldn’t go home because the roads were so icy and dangerous that there would be no way we could return to the hospital within an hour if Allistaire got a fever.  And now of course, the roads are fine but we can’t go home because the electricity is out and we have no idea when it will return. Like I said, laughable.  So I willfully choose to look for the abundance that God has provided.  Thank you God for a safe place with heat and hot water and electricity.  For conveniences like a microwave, a refrigerator, a TV, a gigantic bed that does not convert into something else or require a thermarest, for no beeping sounds or eerie glow of mechanical lights and quiet and the resources to pay for such accommodations.  I thank you Father for a daughter who is well – who is happy and goofy and full of joy and as far as we can tell: absolutely devoid of cancer!!!!

I hope you enjoyed the videos from our departure from the hospital yesterday.  I figured a picture is truly worth more than a thousand words and I just was whoop tired and didn’t have it in me to try to put words to what has transpired.  I still don’t think I’m at a place that I have words.  Like trying to grab hold of the view of a spectacular sunset streaming over mountains or sea with your hands to shove it into your pocket so that it cannot escape, I feel utterly incapable of using such finite means as words to convey or even experience what has happened.  I actually feel a lot like I did when we were told Allistaire had cancer.  It was like my heart and flesh were an impermeable surface through which such realities could barely penetrate and only slowly dripped into me.  These 40 plus days have been a soaking in, a time in which the absolute tangible realities of sickness and death have infused themselves finally into my heart and mind.  To suddenly be thrust into the reality that they can find no cancer in Allistaire, that her life seems to have been saved, I guess it is like the shock of walking suddenly into blinding sunlight after having grown accustomed to living in only the dim.  I do thank God.  I do, but again, my prayers feels so frustratingly brief.  Thank you God.  Thank you God.  I have genuinely believed all along that God was fully capable of bringing absolute and complete healing to Allistaire.  In that sense I am not surprised that there is no evidence of remaining cancer.  I think I am in shock that God would give this to us.  I wonder, why us God?  Why should we have it so easy?  I think about the faces, the flesh, the brokenness of those who still sleep with beeps and green glowing light and tubes and dripping medicine, about those who still sign up for bath times on the SCCA Unit.  We will be back there, soon actually, but everything has changed for us.  Three more rounds of chemotherapy really seems so insignificant.  It feels like the shackles of fear and sorrow have been unlocked and simply slip off our ankles as we step forward.  In the beginning, it was asked, “Why would God do this to us?”  I thought, why not us, who better really to walk such a road.  We live close to this place of extraordinary healing.  Yes our lives are greatly disrupted but we are close to our home and our family and friends and church.  We have an incredible support system between our family and friends.  We have two cars so that we can come and go as we need.  We have financial resources.  We speak English and can walk up to the doctor and ask our questions whenever we want.  We can clearly convey our needs to the nurse without an interpreter.  It even turns out being white is once again an undeserved advantage as there are far more options for a bone marrow donor, if we were to have needed that, than if we were of another ethnicity.  Most importantly, I knew that God would uphold us, that he would provide the way through the fire.  In sum I think we must accept what the Lord gives us, we cry out in our need and we lift up our face in praise for all of the bounty, tangible and intangible, that He has given, in times of brokenness and in times of binding up, of healing and great joy.  We didn’t deserve a child who might die young of cancer and we don’t deserved a child who is healthy and lives.  This is not about what we’ve earned.  This is about a God who is intentionally at work in the world because He loves us, not because of what we have done but simply because in the mysteriousness of being God He has chosen to utterly delight in us and be willing to go to great ends to demonstrate the truth of His love for us.  There is much to reflect upon and so, so much to give thanks for!

I want to provide the last bit of details I was told by the doctors regarding the final test results on Allistaire’s bone marrow test.  As mentioned before, on Wednesday afternoon we got results back from tests completed at Children’s which showed no cancer.  Another part of the sample was flown to a pathology expert who uses an even more sophisticated Flow cytometry test to count the number of cancer cells in the sample with a level of precision down to .01% (I think I have that number right).  This incredible test allows antibodies to bond with a number of proteins on the surface of the cells in the sample.  Each cell is then passed/sent one at a time past a laser which hits the antibody which then releases a specific wavelength of light or energy.  The unique wavelength of energy is then read by the machine and labeled as a specific type of cell.  In this way, each different type of cell in the sample can be counted, including any cancer cells present.  This test is conducted on the aspirate or liquid, bloody portion of the marrow.  They found 0% cancer cells in the aspirate.  I really struggled with understanding the significance of this wonderful test result on the aspirate given that they did not find any cancer cells in the aspirate in the very beginning.  It was explained to me again that when Allistaire first came in, the bloody portion of her marrow was nearly empty of any type of cell.  They didn’t find any cancer cells originally in part because there were almost no cells to be seen.  In addition, the original sample was not sent out but only completed in house.  In order to get the percentage of cancer cells or blasts the first time around, they actually had to pulverize the biopsy sample of the bone in order to get it to go through the Flow cytometry machine.  After pulverizing the bone biopsy in the beginning, they determined that Allistaire had 21% blasts.  This get’s all a bit confusing because blasts are simply immature cells which we all have approximately 1-2% of at any given time because all the blood cells start out immature but the healthy ones eventually mature into healthy functioning blood cells.  Cancer cells remain blasts/immature and thus cause major problems by reproducing at high rates, not producing useful cells, blocking out production of healthy cells and secreting materials that can have other damaging effects on the body.  In Allistaire’s case, her cancer cells produced a web like structure of collagen fibers which is likely responsible for the fibrosis and thus lack of cells in the aspirate.  I am told that because they were able to get such an incredible sample from the aspirate this time, they only conducted the Flow cytometry test on the aspirate and only looked at the biopsy under the microscope.  The morphology test (use of the microscope) only showed a few blasts.  Again, all healthy bodies have small numbers of blasts in the bone.  It is not possible to determine what type of blasts these cells are using the microscope.  I assume that because the aspirate looked so good and because there were a healthy quantity of blasts in the biopsy, the feel very confident in the results.  I of course, questioned the doctors, are you sure you feel good about these results?  Is there anyway they could have mixed up the samples, etc.  Dr. Pollard told me the pathologist, to whom the sample was sent out to, said that Allistaire’s sample was of incredibly high quality and that they wish all samples they work with could look like hers.

Onto logistics.  We are free from the hospital until next Wednesday at which time Allistaire will have labs drawn, see her doctors, have an EKG of her heart conducted and a lumbar puncture for the 2nd round of intrathecal chemotherapy.  The EKG is being done in order to assess if there is any damage to her heart as a result of the 1st round of chemotherapy.  One of the side-effects of one of the types of chemotherapy Allistaire receives can cause damage to the heart.  They did a base-line EKG prior to the first round.  The intrathecal chemotherapy goes directly into the spinal column in order to kill any cancer cells that may have left the bones, entered the spinal fluid and traveled to her brain.  No cancer was located in her spinal fluid prior to the first round of chemo, but as in the case of the first round, this is part of their protocol as a preventative measure.  The next day, on Thursday, she will be re-admitted as an in-patient on the Seattle Cancer Care Alliance (SCCA) Unit.  This round of chemotherapy will be 8 days long.  Unlike the first round, this time we can return home as soon as her chemotherapy is complete.  We will have to return a few times a week for labs and doctor visits.  Should Allistaire get a fever (or spike a fever, as they like to say), we will have to be re-admitted and put on antibiotics.  In this event, we would unfortunately have to stay until her ANC rose to 200 again.  This means that on one hand we could be home for around 3 weeks before the next round of chemo, or, as in the case of round one, we could end up spending almost all of these three weeks in the hospital again. On her first round of chemo, Allistaire finished her chemo on Christmas morning and the very same afternoon got a fever.  Had this happened on any other round it would have meant staying in the hospital 25 days past the end of chemo.  Please be praying that once chemo is complete Allistaire will be fever free and we can enjoy some semi-normal time at home together as a family.  Our plan for Solveig is to bring her home after this second round of chemo.  Also, I now have a plane ticket to fly out late Saturday night to Bozeman, Montana where she’s at with Sten’s folks, to visit with her through Wednesday afternoon.  This will enable me to have a few days with Solveig and then bring Allistaire back into the hospital on Thursday.

*Quick update:  Our power was restored late Friday evening and we were able to return home to a 56 degree house.  We all slept in until 10:45am this morning.  I think we might have been tired.  The day has been glorious.  We awoke with the bright reflected light of snow.  Allistaire giggled in her crib and pointed to the window, saying, “Liiiight,” in her breathy sweet voice as I opened the blinds.  All morning she went from room to room exploring all of her favorite things: playing the piano, pulling out books and blocks and balls, opening the drawer to the coffee table and pulling out the coasters and remotes, she tried on Sissy’s boots and rode the horse on the stick.  We ate a delightful breakfast of apple and chocolate chip pancakes and bacon – our favorite Saturday morning tradition.  We gave Allistaire a bath and changed her dressing and the caps on her tubes.  She’s taking her nap now and I am almost all packed up for the airport.  I could literally not ask for anything else – well, I take that back, the only thing that could have made it more complete would have been to have Solveig with us.  But thanks be to God that in hours I’ll be in Montana with our wee love!

7 responses »

  1. I am so happy for you. I know that being home must feel complete. Have a safe trip and As always will keep you guys in my prayers. Keep the hope. Michelle Brunner

  2. Thanks for taking the time to explain all the details of the test and the test results here, Jai. And I’m so thankful that you did indeed to get to leave the hotel, and go home. What joy to watch your girl take in her home again. And after all those days and nights without solitude, without rest, I’m praying for rejuvenation for you all.

  3. Wow, so much to process! Thank for the explanation as I was wondering what it all meant. You’re a really gifted writer:). So glad you were able to finally go home and see Allistaire play. That had to be the best. And to sleep in your bed and make breakfast… Things we all take for granted until we don’t have them any more. I think your prayers of “Thank you God” are more than adequate. I think it’s like when our hearts are breaking… God see the groanings of our hearts that words can’t express. I think it’s the same when we’re grateful for something like this. God sees the groanings of our hearts even when we don’t have the words to communicate it. I keep saying the same thing:). Hope you have a great time in Montana with your other little sweetie! Will keep you in our prayers.

  4. Thanks for all of it… don’t even know where to start.
    I’m thankful, amazed, challenged, amused… the way you offer your life to us is really precious and rare, and truly cherished by me (and probably anyone who reads).
    Amen and amen to every good thing God is doing within you!

  5. I am so excited for you and your family. Enjoy your few days here in MT with your daughter. Someday when you come back for a longer visit I’d love to have coffee with you. I will continue to lift your family up to God in prayer. Take care! Caty

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