What joy it is to announce a fully engrafted new immune system, blood cell producing marrow in Allistaire! Yesterday, on Day +19, she reached the magical line of two straight days of an ANC over 500. On Friday she had reached 352 and on Saturday her ANC jumped to 817! Sunday it bobbed around and dropped to 540 and today it is 968! Her platelets and hematocrit are also climbing. Today her platelets are 98 and her hematocrit is 32.9.
Allistaire is really just doing spectacularly! She is now taking four of her medications by mouth: Lasix for fluid retention, Zofran for nausea, Enalapril for her heart and blood pressures and Ursodial for her liver. This is a huge accomplishment! Allistaire actually told me the other day that she is feeling better and is ready to leave the hospital. I greatly encourage this desire at this point, but let her know that we can not take her IV pole with us out of the hospital so she has to start taking all of her medicine in her mouth and start eating with her mouth. In addition to taking some meds by mouth, today marks her last day of the antibiotic, Cephapime, which she has been on since her first fever spike back on March 16th. This is a med she gets three times a day so it will be really nice to be done with it. She also continues to taper down on her Diladid pain drip. Today she is at two and will likely drop down to one tomorrow. At her highest, she was at a seven. She does occasionally still express pain in her tummy but it is hard to discern if this is actual pain or if it is nausea. Our new BMT doctor, Dr. Burrows, wants to scope her from both ends (down into tummy and up from the bottom) on Thursday or Friday to look for GVHD in the gut which is very common at this point. Her skin is also looking a lot better. The weird bronzed skin that resulted from her conditioning chemo, Busulfan, is starting to peel away. The change is most noticeable on her hands. Her back and arm pit are also getting better slowly. I should point out that these areas do not hurt Allistaire, they are just mostly irritating and itchy so we are applying a few ointments to help the healing process. Our biggest hurtles at this point are for Allistaire to increase her eating and drinking so that she can take in the necessary calories by mouth and get off of TPN and lipids. She must continue taking more and more meds by mouth. I think she is going in the right direction as far as fluid retention, but she is still out of balance at this point. As far as I understand, because her liver and kidneys are doing so great, this is probably just a matter of still healing up from mucositis.
Allistaire continues to be full of joy most of the time these days! She had a great time with my dad over the weekend and apparently remembers his cute suggestion that imagined the white linoleum on the hallway floors being shark infested waters, forcing Allistaire to walk on the “bridge,” or the brown linoleum. She walks doggie and piggy and her now two Hello Kitty purses in her stroller. She is singing a lot more and has even been dreamily singing about Tito – one of the male CNAs (nurses assistants). It is just getting to be more and more fun to be around her and everyone celebrates her liveliness! Everywhere we walk – she is walking, living, giggling victory! Of course as Day +28, which will be on July 16th, draws near and we have our first chance to see how much of her cancer is left in her marrow, I feel trepidation. I have no idea what the road ahead will look like if there is cancer left. Dr. Burrows has agreed to meet with me in the next few days to discuss this. But today as I relayed my fears to Dr. Burrows, she told me that honestly she was one of the doctors who was very unsure if this transplant was a good idea. A doctor’s first responsibility is to do no harm and her fear was that Allistaire would be in very bad shape. She said that she is utterly delighted to see her doing so extraordinarily well. She said that we are pushing the edge of what is being done in transplants. We are in new territory. Scary and exhilarating. I am going to enjoy this week. I am going to soak in my sweet-faced little love.
On another note, Solveig just finished up her time at Camp Mak-A-Dream just east of Missoula, Montana. Sounds like she had an amazing time. She had the opportunity to ride horses, make a tie-dye shirt, go fishing, shoot guns and a bow and arrow, play tons of games and go swimming. She had the joy of being in the same cabin with Jaxon’s older sister and a girl her own age that is the little sister of a boy we met here at the hospital who had AML and two transplants and is 10 years out from his last transplant. What a joy and a gift for her to be able to be with other children whose lives have been and are so deeply impacted by a sibling with cancer. Solveig took some disposable cameras with her so I’ll see about getting some of her photos posted once we get them developed.
Lastly, I went on my first bike ride in over a month. It was mostly a great time, except the last 45 minutes when I just wanted to be done. I rode the Burke Gilman Trail to the Sammamish River Trail to my favorite nursery, Molbaks, which is in Woodinville. Not sure how far that is but my behind sure felt like it was quite a ways. I’m also now a bit more prepped with a pair of gloves, riding glasses so the wind doesn’t dry out my contacts and make me swerve all over the place, a clip for my pump and a bag to put my phone, keys and such in so that I don’t have to hang my wee silver hand bag off the handlebar and feel like a raging dork. Also folks, I’m going to put it out there again – it is almost exactly one month until I ride in Obliteride and many of you have already generously helped me reach almost $5,000 of fundraising. I still am hoping to get all the way to $8,000. Remember that 100% of donations go directly to funding cancer research at Fred Hutch and in case you are just picking up our story – Allistaire is not in Montana today on Hospice because Fred Hutch just recently opened a clinical trial for a bone marrow transplant without being in remission. Transplants are traditionally only offered to patients who are in remission which means 5% or less cancer in the bone marrow. Allistaire went into transplant with 50% disease. She has been given a chance to fight one more time because of the research being done right this very minute at Fred Hutch. The abstract has become oh so tangible. Allistaire is living, walking, laughing research. Here is the link to my Obliteride page if you are interested in supporting me: Help Jai Obliterate Cancer!!!!
Last but the farthest thing from least, I address You – You creator of all things – You God who was not content to stay far off and lofty but looks down upon the earth and considers all of our ways – You who formed Allistaire Kieron in my womb – You who delights to bring about the seasons and who created all the vast glories around us and in us – You, the one I have the privilege and delight to call Father, Thank you. Thank you for bringing us this far. Thank you for every single day of life. Thank you for every way that you sustain us and hold us up. Thank you for your beautiful promise of Rest – rest now and rest for eternity! To God be the glory!