Wednesday I had the privilege of attending a kindergarten informational meeting. It’s hard to explain the happiness I felt, sitting among all of these kinder moms. I am smart enough to know that this day was a gift, a blessing. An elusive unicorn that I currently possess. The beauty of planning for normal.
Today we met with GI and Reese had her first PFT with the pulmonary team. I really like Reese’s new GI doctor, he came highly recommended (we were told it had to be him.) He told me that he spent two hours last night reading about her, preparing for our meeting. I asked him if he did this for everyone (wondering how a man like him possibly had the time?) and he replied, “No she’s just that complex.”
Our appointment lasted another two hours and the conclusion seems to be that we are going to watch and wait. There is a question as to whether we are still seeing the effects of gut GVHD or if there is another player. Something else that is yet to be diagnosed, causing her protein-losing enteropathy. But, since she has rapidly been improving over the past month (albumin now at 2.6 and IVIG being cut by 3/4) I think the team will wait and see if this incredible streak continues. I pray that it does, as Reese says, “I’m Reesey Piecey again!” or my favorite “Mommy, Reesey is BACK.”
PFT stands for pulmonary function test. This looks at Reese’s lungs for a baseline. The reason for this test is proactive screening for chronic GVHD. Reese has (had?) acute GVHD. She does not have chronic…. which typically begins 100+ days post transplant and can last a lifetime. We feel incredibly fortunate that Reese does not have cGVHD, partly because we know that having severe acute makes her more at risk for this complication. So why do pulmonary function testing? cGVHD can attack the lungs… and it’s hard to spot until it’s too far advanced. So, when we got back to Lurie, they recommended this preemptively, to get a baseline, in case there is ever any question. Also, to get Reese used to the test, so she would be able to perform if needed. There was a catch, this test is not usually given to 5-year-olds. It seems that age 7 is the first year they really expect it to go “well”. The UCSF pulmonary team would not test Reese for this reason. Interestingly, and I thought this was pretty clever, when our coordinator tried to schedule the test for Reese, the pulmonary team insisted that SHE come and take it, to prove that an (almost) 5-year-old couldn’t take it. So, how did Reese do? She was very receptive, of course. She went in cold and was fascinated by the technology. It was like a video game and she wanted to fill the lungs. She was allowed five tries. On each try she got markedly better, and then her tries were over. It was a win and this will continue, until she can do more and last longer. Hopefully, she will never NEED this test. But, in the event that she does, she will have “studied” and know how to perform. Oh, and she brought home goodie bags for Quinn, Claire, me and Chris. So we can all plug our noses together and practice blowing into tubes. We are saving it for Saturday night, us Feldermans know how to have a good time.
Lately, the questions of how & why have been coming up. How did Reese get leukemia and why did Reese get leukemia. By others who know me well, and even by myself talking to my husband.
How. At one point in time, Quinn and Reese were one embryo. Then, the embryo split, very early on, in utero. (We know this because they shared a placenta but not a shared amniotic sac.) Then, when Reese was still in utero, one of her genes made a mistake. (Bad luck, as it has been referred to over and over. The understatement of the year.) This mistake is a mutation. RRAS2, to be exact. This mutation is not germline, meaning she didn’t inherit it. This kind of random mutation is called somatic.
Why. This is harder to answer, the million dollar cancer question. One thing we have learned, with complete certainty, is that cancer does not discriminate. During our time in the bone marrow transplant unit I met so many people, from every walk of life. Sometimes we had nothing in common, (but we had everything in common.) Sometimes we were just alike. I have gone back to thinking about my pregnancy, and talked with other moms, too. Sometimes there is anger, defense. I didn’t so much as drink a cup of coffee when those cells were dividing, I was purposeful and my “healthy twin pregnancy” books were my bible. Gain 20 lbs by 20 weeks, check. Organic, wholesome, fresh food, check. Preemptive physical therapy twice a week, check. I did more than my best. Then we talk about the toddler years. In the transplant unit we met children who drank coke for breakfast, kids who were raised completely organic, and everything in-between. But it doesn’t matter. None of it did. I have racked my brain, many a night. And in the end, as a mom gets far enough into this, with enough cohorts in the same boat, you learn, we have no control. There is no why. Apparently, there is luck. After that we have faith and playing the hand we are dealt. Like a mother.
Me- What a yucky day (rain)
Reese- That hurts God’s feelings. It is not a yucky day, it’s a great day.
Thanks for the reminder Reese, you are right.