Jenny here. We have some updates from clinic today! We met with both the oncologist and transplant coordinator RN. First, the BMA preliminary results are in...drum roll please...the initial flow report continues to not show any visible signs of leukemia. Just as before, results are given with caution because 1.) We know that this disease is hard to see as it decreases and hides more AND 2.) It always wants to come back. BUT, with that said, we really are very happy to hear these results. It also gave Wil the good news he was hoping for today--his oncologist feels, given the upcoming and likely transplant, he has had enough chemo and we can focus on him gaining strength in the next month in prep for the next leg of the fight.
The tentative timeline is this:
7/16 Donor arrives in DFW
7/17-7/29 Donor undergoes pre transplant work up/checkup the first day. About a week later the results will be in, assuming the Donor is cleared, prep for the donation will start, followed by donation commencing over the next week (2 days of giving blood that is circulated through an apheresis machine to take out T-cells that will be frozen).
7/30 donation will be sent to Houston to a pharmaceutical company to be altered with a retrovirus or "suicide switch". This is where I start to have visions like we are a part of the show Alias! This will take about 16 days.
8/12 If all goes as planned, Wil will admit to UTSW to begin the heaviest, most brutal chemo so far, with added full body radiation. The intention is to strip him of an immune system so he is a clean slate for those healthy stem cells to grow. Once that is complete, and the donation is back from Houston, we will have our day "0" in the transplant world: The day someone else's life force is dripped into my love and will *hopefully* be the beginning of a new immune system.
He will be in the hospital about a month. The first 100 days are nail biters. GvHD (graph vs host disease) is the real enemy here. And with a 50% Donor match, the likelihood is greater. Its why under standard protocols they don't use a 50% match. This is where is gets super exciting in terms of the art of medicine and technology. If Wil develops GvHD, his T cells attacking his own tissue as a foreign entity, the team will first try a standard steroid protocol to fight it. If that doesn't work, they will inject this fancy drug that will activate the suicide switch on the problem T-cells and leave the cooperative ones alone! This will preserve his immune system and aid in a quicker recovery (the normal steroid approach can mean up to a year of heavy steroids and Wil doesn't tolerate them well...so this study means a quicker transplant, quicker recovery, and less steroids...a triple win). It's been used in the UK for over a decade with good results...it's just not FDA approved here yet. Wil will be the first UTSW trial participant (other centers have already begun, but only 36 total patients in US will be used).
This could be a game changer for so many people down the road. Not only could this be his cure, but him and his Donor are potentially changing lives and outcomes for many others in the future. (And Wil is the talk of clinic now. His oncologist is SO thrilled for us and for the world of oncology. Other than us, no one wants to beat this more than her. We love our team).
But we have learned along the way, with each wedge of this process, that there are no guarantees.
Side note: Whenever I haven't seen a familiar face at clinic for a few weeks I think about their fight. And if they are still alive or how they are doing. It is hard not to wonder. A sweet virtual friend lost her hubby, post transplant, post 100 days, this past week. On Saturday I thought, this is her first Saturday without him. On Sunday I thought the same. She writes and says, "It's going to be a long and tough road ahead but I will move forward. Prayers to you!" I'm stunned by her grace and heart in midst of the one outcome they fought so hard to avoid. These are the people, near and far, we are surrounded by in the world of leukemia. I'm honored to know them.
We will continue to hope, pray, rain dance, chant, absorb your energy, and, most importantly, live and love as well as we can while we can. And these coming 30+ days pre-transplant we plan to live it up! Well, the new kind of live it up...dine in a restaurant, see a movie, love on the dogs, see more people, kiss on the lips, and eat fresh produce. And maybe throw in a low key theme party before he admits he he will let me. We are such risk takers these days :)
This transplant almost doubles his survival rate. It's something to hold on to. We are learning to take it one day at a time in every circumstance. The transplant coordinator reminds us to take it day by day. So we fight like hell each day. Then we let it conclude, in its own little section of our story. And then we get up again.
What is so hard to wrap my head around is the combination of living day to day with the knowledge that if this works, he will be followed for 15 years. Up until our 30th wedding anniversary! I think most of us think about the future, more so in the next year, to 5 or maybe 10. 15 years of checks and thinking through decisions about careers, kids, vacations, moves, etc while in the shadow of cancer...leukemia could happen to any of us. Once you have it though, it changes the lens through which you see the compartments of life. It just does. Yes, I can see us, 15 years from now, but I don't have a clear picture of what that life looks like outside of the present moments. I do dream, but real life faith has taught me to not cross off any possibilities and that we can be ok no matter what--that if given some other ending, it can still be ok.
Today, on the way home from clinic I said, with a flirtatious smirk I've been giving him for years, "what would I do without you?" He used to say "I don't know" and smile back. Now he says in a certain, matter of fact tone, "I know you'd be ok, you'd figure it out." My head says this is progress in both of our emotional worlds, a new state of ultimate love in our marriage. I can love you so much and not see a world without you, but I know the love we have tended to in these 15 years together is also enough to make it through to whatever other side this cancer thing holds...regardless. My head sees that as progress, but my heart still struggles with it every day.
With great excitement, met with equal fear, we enter this next segment and hope you'll send us your positive vibes. The remaining 2014 is set to be quite the adventure! Love, still constant in this journey, is about showing up for each other, knowing the risks as well as the possible benefits. It's about seeing the potential pain of it all but leaning in and not holding back...repeated each day, it makes for an exquisite parcel of life to share with someone as beautiful as Wil. To share with those of you who have given us your time and love as well. Extracting the sweetness or spitting it out. It's up to all of us. This love we share? It's so much larger than what even lies ahead. It's not bound by anything, not life, not death, and certainly not cancer.
Another very well written and spoken entry. I think you of you both every day and hope that you are have a day full of memories. Muah!!
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