Wow what a week – what a full to bursting week. So much to process and think through and feel and experience. So full I feel so very tired. Tired and thankful for the week we were given. Here’s a brief re-cap. One week ago today, Dr. Pollard said that we could choose to be done fighting this cancer and bring Allistaire home to die. Neither Sten nor I nor anyone we know who knows Allistaire is ready to be done. So the plan was to get the whole family out here to spend a bit of time with Allistaire, not knowing what the future holds. We first prioritized time with our family of four. Sten and Solveig flew in on Wednesday morning, and on Thursday we had family pictures done (more about that another time). Friday we went to the zoo in the morning and had a picnic dinner at Magnuson Park with my parents, Terry and Kathy Murphy and my brother and sister-in-law, Pat and Briana. Saturday morning the four of us were given the opportunity to have a private showing of the new movie, The Croods, at a movie theater in downtown Seattle. We were the only four in the theater and were offered any and all snacks we wanted. Saturday evening the entire Montana gang including Allistaire’s grandparents, JoMarie and Lowell Anderson, Sten’s three brothers and their wives, Peder and Jess, Bjorn and Jessica, Jens and Jo and our two nephews, Per and Haaken, joined us for yet another dinner at Magnuson Park. On Sunday morning we all enjoyed a bright blue sky at Discovery Park and another picnic dinner at Magnuson. Three nights in a row finished up with playing on the playground well into the dark. The bonus being that we had the whole place to ourselves. Allistaire threw rocks and sticks in the lake, ran, walked, blew bubbles, climbed stairs, flew down slides, swung on swings, played in the sand, was sweet, was grumpy, was herself for the most part.
Every day we woke her before she was ready, put her down late for naps, woke her up early from naps and put her to bed late. Needless to say, she is exhausted. But it was such a joy to see her being more like the little girl she is, enjoying the simple joys life has to offer that are for us incalculable treasures. We did very ordinary things that felt extraordinary. When Allistaire first walked outside after over a month of being in the hospital, she exclaimed with excitement, awe and glee, “Look mommy, TREEES! Look, flowers! I see a bird!” It was glorious and heart-breaking at the same time. A forlorn Allistaire still in her hospital bed makes it the tiniest bit easier to accept her death as a possibility. To see her outside, playing, delighting, observing and just living, makes the thought that she could be taken in the short-term, like a hot-knife to the gut. There were plenty of times that my eyes would be watching something like her glee going down the slide and my mind would move towards those dark thoughts of no longer having her in our life, and I would have to consciously pull myself back to fixate on the joy at hand, on the moment unfolding before me.
Almost amusingly, Allistaire started chemo on Friday night. When we met with Dr. Pollard last week, we had planned to do the chemo regimen that had been our second choice the last round. We planned to begin Sunday night or Monday morning. In that meeting though, as prompted by my sister-in-law who was prompted by her step-dad, I asked if St. Jude’s might have any clinical studies to offer. Dr. Pollard stays in touch with other AML doctors from around the country but it had been over a month since she had contacted them. On Friday afternoon, we learned that while they did not have any clinical trials that Allistaire would qualify for, they did have a chemo regimen that combines two known chemos in a new way. They have had moderate success with the 15 children that have used it. While it was not the majority, there were a fair number of kids who actually got into full remission with it who hadn’t been able to prior to that. The regimen combines high dose PEG Asparaginase (one of the chemos in the regimen we had planned to use) and low dose Methotrexate, neither of which Allistaire has ever been exposed to. Both drugs act by starving the cancer cell in a way by depriving it of the compounds it needs to survive: methotrexate inhibits the metabolism of folic acid and asparaginase destroys asparagine. While no one seems optimistic that this will get Allistaire into remission, we pray for a miracle, and we at least are hopeful that it will be a good means of keeping the cancer at bay until Allistaire can have the clinical study transplant. One of the big upsides of this chemo is that it does not actually suppress the healthy cells in the marrow very much which means that we may be able to either be out-patient for parts of it or at least get passes to go out as we have this past week. I personally am more for staying inpatient and just getting to go out here and there because I think it would keep her safer overall. It is a strange, new chemo regimen for us because it is given repeatedly on a weekly basis. On Friday night Allistaire had a methotrexate “push,” which means they simply push the medicine into her lines from the syringe into her Hickman line. That’s it – not even five minutes and you are done. The next day, Saturday evening, she received her Asparaginase in a one hour infusion. It is relatively common to have an allergic reaction to Aspariginase which would require discontinuing it’s use. Therefore, Allistaire’s vitals were monitored repeatedly over the hour. Thankfully she did just fine, though an allergy can still develop during future doses so this is one thing to very much be praying for! She will receive these same chemos each week on Friday and Saturday evenings for at least four weeks. I believe they will test her marrow at the end of the four weeks. It is a bit strange because this is not the usual routine of giving chemo, then waiting for blood counts to drop and rise again. What we would expect and hope to see is her regular blood lines not being too suppressed and the blasts in her peripheral blood to be gone and eventually, blasts in her marrow to be decreased or gone. Her blasts have already begun to drop. I will have to look back but I think they were around 3,000 on Saturday, 888 on Sunday, 350 on Monday and about 170 yesterday. Boy do I love this!
There are so many strange and new things about this point in our lives and Allistaire’s treatment. On top of it all, we suddenly feel the need to research other options for Allistaire. The first time we were here, she was in complete remission with the very first round of chemo and there was no reason to ever think she needed something else. When we finally returned home, my greatest challenge was to try to put this cancer thing more behind us and not be so fixated on it. Research was far from my mind. It seemed we had narrowly escaped and now my role was to figure out how to live a post-cancer life. Well, then bam, we were hit again but we followed the standard treatment for relapse, having no reason to look elsewhere. But now, now things are different and we are very much running out of options and the standard therapies have not worked. That said, fancy anti-cancer diets are not an option right now. It is an immense challenge to get Allistaire to eat most of anything. Getting a strawberry in her represents a huge victory. Allistaire does not have a feeding tube I can just dump things down that don’t taste good to her. We have managed to keep her weight up which we are told has the biggest bearing on her nutritional needs. It seems diet is something we will have to focus on at another time. Our main question pertains to whether or not there are other transplant options for someone in Allistaire’s case who is not in remission. We just want to be certain we have explored all the options being employed by experts in the field around the country. Dr. Pollard has been out of town but I am hoping to talk with her in the next day or two to determine how we go about looking into this. Unlike in the Hem/Onc world, the transplant world does not assign you one doctor that you can direct questions to. It is really quite frustrating and something the SCCA should really work on. So a big prayer request is that we would be able to learn of all the options around the country that are available to Allistaire and have the discernment and guidance to know which is best. Of course it would be most awesome if she were just to be in remission and be able to do the original recommended transplant.
As I noted before, the clinical study transplant requires a 10 out of 10 match. We had been told that because Allistaire is, “white on white,” that we shouldn’t have a difficult time finding a match. However, in talking with Laurie, the unrelated-matched bone marrow search coordinator, there is actually not one possible match for Allistaire in the United States – that was totally shocking to me. The good news is that there is a non-US registry (I am guessing a European one), that requires donors to pay to be on the registry and they renew their committment to donate on an annual basis. In addition, the registry starts out with higher-resolution data on the matches which allows for Laurie to better determine if the possible donor has a good shot of being a complete match. On top of it, the registry actually, amazingly, pays for the remaining testing needed to determine if the donor is a 10 out of 10 match. Laurie has requested 6 donors to be tested and the registry has confirmed their agreement to do this. We should know in the next 1-2 weeks where we stand. If none of these turn out to be matches, Laurie will have to turn to other registries. The “World Book,” is a registry that all the smaller registries upload their data to – some in real-time, some every 30 days and others every 90 days. This means that it may appear that there is a possible low-resolution match on the World Book, but then Laurie must contact the individual registry to see if that donor is still available. Once any additional possible donors are identified, she would request a fresh sample be mailed to the lab here so that all the testing could be completed. Unfortunately, these other registries start with much lower-resolution data which just means you have far less to go on to determine how likely the donor is to be a match. Thus more testing is required. At this time, there are 12 other donors on the World Book that have the initial potential to be a match. However, testing is about $5,000 per donor and what do you know, our insurance, Blue Cross Blue Shield of Montana, does not cover the cost of the donor search. We have unlimited coverage for the transplant itself and are covered for the procurement of the cells and the testing of the identified donor, but no coverage to locate/identify the donor in the first place. This is just sheer insanity to me. So in addition to everything else, we are trying to figure out how we can assure Laurie that there is money to do this additional testing should the 6 being currently tested fall through. I am trying to track down whether or not this is something that the hospital will cover through their Compensated Care Program. I have contacted our insurance and am having an appeal form mailed out. I will have to write a letter and have our doctor do the same. It feels like a long shot. At this point we are not ready to say we need fundraising for this need because we want to exhaust our other avenues, but the time may come. It just blows me away that such a ridiculous amount of money has been spent on Allistaire and this relatively small amount could be a hang up. Allistaire’s bill the first time she was treated was $1,549,000.00 Today it totals approximately $855,000.00 ($85,000 of which is her Ribavirin treatment). All total $2,404,000.00 has been spent to sustain Allistaire’s life. I joke that she is worth an overpass – you know those signs that say how many federal and state dollars are going to the road construction project – Allistaire is on par with those.
There have been mornings when I just don’t want to get up; I don’t want to face another day. There are times when I want to just crumple down into a crying ball and hide. There are times I want to yell and scream and I see the futility of that, I see that I have a choice. The Lord keeps reminding me that this IS the life He has given me – this day comes directly from His hands – He has given it to me both as a gift and as a responsibility – this is the work He has given me. How I desperately want to turn away from it but to do so would be to turn away from Allistaire and ultimately to turn away from God. I stood in the bathroom in our new room the other day, silently crying, and I looked up out the window and saw a bird flying high on the winds, no flapping of wings. I was reminded of God’s promise that “those who hope in the Lord will renew their strength. They will soar on wings like eagles, they will run and not grow weary, they will walk and not be faint.” Sometimes I feel utterly overwhelmed and tell the Lord how much I cannot do this – I cannot keep going. I look up and see things down the road that are far too much for me but the Lord keeps quietly urging me to walk one step at a time. This is my only responsibility – to look to the Lord for the strength and direction for each step – He is responsible for all that is down the road. Yes, I am weary of eating the manna – I would far rather have a whole feast and field before me of promised provision, and there is a way in which I do have that, but it is handed to me in daily portions. Eat the manna Jai. Yes Lord. Walk each day with Me. Yes Lord. Yes Lord.