Yesterday afternoon I received a call I have been anticipating all week–our schedule for the first week in January which is called “outpatient work-up week”. It is a full week of testing Reece’s body to understand and predict how it will handle the transplant. It’s at least four days worth of appointments that include, but are not limited to: chest x-rays, another bone marrow biopsy, blood draws, an echocardiogram, radiation therapy and consultation, and a whole bunch of talking to a whole bunch of people. It also includes an end consultation appointment in which they review the results of the testing and discuss all of the many side effects of transplant. I have a pit in my stomach just thinking of this meeting. Every doctor and social worker has talked about this, “big, scary list” of things that are possible side effects, both long-term and short-term, of a transplant. My whole “I only want to know what I need to know” strategy goes out the window for this meeting and I know it will not be easy.
After receiving this schedule, I spent about an hour on the phone with our assigned social worker and was able to get answers to many burning questions I had over a range of topics. Needless to say, it was incredibly helpful. I also learned some new things that blew me away. For example, I hadn’t given it any consideration, but once Reece receives his transplant, he will lose all of his immunizations he has had since birth. Wow–really? It makes perfect sense to me, but I hadn’t thought that far out. It paints such a picture of how extreme this process will be. He will have to start from square one a year after his transplant happens. Other things I learned:
- Reece will be able to have visitors (both in the hospital and also after discharge, as long as they are healthy). I already knew that he could have people visit in the hospital, but didn’t realize he would be able to do so at our home. Still, we will need to be very cautious on this one.
- I asked if we should cut Reece’s hair really short before he is admitted. (I love Reece’s hair, by the way, and was dreading this.) Apparently, they do fun things with the hair right before it falls out, like color it and make it into a mohawk or something silly if he wants to! And they will shave it in the hospital. This is good news, since I would be sad to cut it before it needed to go. His hair will start to grow back around 100 days post-transplant.
- The kids on the unit generally do not interact, as I originally thought they would be able to do so. She is still going to see if there is another child around his age that he can meet on the unit. This would be so beneficial for him; I’d love for him to meet someone going through a similar experience. (By the way, the floor is like a ghost town–lots of big bright rooms with kids in them, but all the doors are always shut and no one is walking around other than a few doctors and nurses. There is a shared playroom they can go into if their counts are high enough, but they go in on their own.)
- Reece can not got back to school for at least six months post-transplant. I knew this would be the case, but was sad to formally hear the information. He loves his school, teachers, and classmates!
It was a helpful conversation and I felt pretty good afterward about the information I learned. We drove our kids to my parents house to stay for the weekend, so we can get some things done around the house, do some shopping, etc. It’s a little strange being in the house without the kids. I went to bed feeling like I would be getting some good sleep and I should have anticipated that it wouldn’t be the case, due to the conversation I had earlier in the day.
I awoke in the middle of the night and immediately had the information spinning in my mind. The information we discussed, coupled with the week’s worth of realization that Reece will no longer be enjoying his normal activities led me to conclude that there is a grieving process at work. We’re certainly not grieving the loss of Reece, but rather the loss of all the expectations we place on and assumptions we’ve made about his life. Realistically, we make these assumptions about life in general. We expect and plan that things will go normally and don’t think much of it until something shifts those plans. We entered into parenthood with the hope and, therefore, assumption that our kids would be healthy, whole, and lead full lives that outlast our own. The moment I heard that Reece had a diagnosis, my heart hurt for this. In the words of one of our doctors, “This is not the time to be planning the next 10 years of your life.”
This is not to say that we don’t feel hopeful that Reece will make it through this procedure and go on to lead a full life. What I began wrestling with (continued, actually, since it has been on my mind before) is what does it mean to have a full life? I kept thinking of Reece not being able to go to school and see his pals, not having play dates, not being able to run around outside without a mask, of us being worried about all the germs and viruses that could complicate his health, and of all the possible side effects that he could be managing long-term.
Then John 10:10b popped into my mind, “I have come that they may have life and have it to the full.” I considered that my vision of full life for Reece may be entirely different that God’s vision for him. I know that Reece has Jesus in his heart and I will save his testimony and how we’ve seen God preparing him for this for a later time. But I know God very much has a full life planned for him–no matter how long that life on earth will be. I just never considered that it would different from my own worldview on a “full life”. When we talk about someone who has led a “full life” it is usually either someone who has passed away at an old age or someone who has passed away young, but with a wide variety of activities they enjoyed doing and with a carefree aire about them. When I think about a “full life” for my child I think of him being able to do everything any other kid is doing his age. Well, that won’t be the case for Reece over the next six to twelve months. He also may come out with side effects that he manages his whole life. But it’s a powerful thing–almost overwhelming–for me to realize that I have been completely wrong in my assumptions about having a “full life”.
After getting off the phone with the social worker yesterday, I found myself eager to get the process started. It was a strange realization; am I actually eager to start something like this? Certainly, I am not looking forward to the medical process that we will watch Reece go through, but if I look at Reece and who he is in the context and truth that God will be giving him a full life no matter what the outcome, I am eager to see that part of his story unfold.