Like Seriously? Is this even happening right now? No, no it’s not…. But it will be happening tomorrow at some point. I don’t even know what time this magical bag of donor marrow will be hung here on my 5 year old son’s IV pole. I do know it’s a 4 hour process that involves Benadryl… Praying and hoping his body accepts it. I mean that’s all we can do. We hope, we pray, we cry, and we hope some more. There is no way to sugar coat the obvious elephant in the room… This process could end his life.
Lucas could become completely cured after this BMT if it goes well. I can’t believe how well his little body has done so far. The chemo conditioning treatment went a little too smoothly for my expectations. I thought he was going to cry a lot, puke a lot, and need so much more help medically. However, I guess it has yet to catch up with him. Those things could still happen. People with anxiety suffer greatly in situations like these because we fear the unknown. I have NO idea how things will go. I hate that.
Harrison has had a hell of a time getting milk this past weekend and I feel guilty. I feel like I couldn’t give Lucas as much attention as he deserved while feeling yucky and not eating from the chemo. I also feel terrible that I haven’t been able to produce what Harrison needs. Formula is great, but I wasn’t planning on using any. Thank God I bought some anyways in fear that this may happen. Although I believe my supply decreased due to the birth control I started. Once I stopped it, my milk began to come back. It’s a rare side effect, but hey we are that .01% Or we wouldn’t even be here at Boston Children’s.
Someone said to me, “We shouldn’t be at our child’s bedside in a hospital, they should be by ours.” While that is true, I’m glad to be here. I’m happy to be the one that Lucas wants and needs. However, I am emotionally drained. 24 days postpartum, and the blues are kicking in. I’ve never really had to deal with it before, but with all that I’m going through… It’s totally normal, and I get that but I’m not a sad person. I’m an anxious person, so to feel sad is a different feeling for me. I’ve got so much to be happy about. It’s just something I have to get used to. Let myself feel, and then conquer it head on. Or at least I will try to.
I’ve said it before, and I’ll say it again. If there is a God, and if he only gives us what we can handle… Why does he think I can handle so much? I feel like my heart is literally being torn in half. I can’t help but wonder if we will be leaving this hospital with or without Lucas. It’s a valid fear, but some say “Oh don’t think like that”. Well, my mind runs on statistics and numbers. That’s all I’ve heard from the transplant doctors since this journey began. I’m well aware of what’s about to happen in mathematical terms. My son is strong, and I have no doubt that he is a fighter with lots of Sissu. However, I can’t stop thinking about what I know.
Last year we were told by a doctor that we wouldn’t transplant him unless he was dying because he would have a 20-30% chance of obtaining Chronic Graft-Versus-Host disease. If that happens, there is a high mortality rate, of about 40%. All we can do is hope he beats the odds. Then if he does come out on top, we have to worry about colds, and flus this winter. There was a study a nurse here pointed out to me that explained how 40% of children who obtained pneumonia after transplant died. If Lucas even ends up with a sniffle, he wouldn’t have what it takes to fight it off. Therefor it could turn into Pneumonia, and that he really can’t fight. He would be hospitalized in an ICU unit, probably on a ventilator if that were to happen.
I tell myself that we are in the best place. We have the best doctors, psych team, child life team, nurses, and clinician assistants. If any other child suffered from Chronic Granulomatous Disease like Lucas, they would consult his doctor here before treatment, and possibly even travel here for transplant. We met a family from Michigan today who have been here for six months. SIX MONTHS. Their son’s BMT didn’t take, and he had to stay longer. Not sure what they did for him, and right now I don’t even want to know. I just want to sleep, but that won’t happen. Probably not tonight. Maybe not even much for the next 9-12 months during Lucas’ period of isolation to ensure that the above doesn’t happen to him. I’m nervous. I’m scared. I’m angry, and I’m sad.
If we didn’t go through with the transplant, he could have gotten a fatal infection. Now that we have wiped out his immune system, he can get a fatal infection. Basically he could die either way, but this transplant could offer him a long healthy life. I have dreams of seeing his little body in a coffin. I wake up in a cold sweat at night when that happens. It’s like in my head somewhere, I know he won’t make it. I just hope he proves me wrong. Show me the SISSU Lucas! Make me a believer! I need that.
It’s hard to sit here staring at him thinking that all of his blood making cells are gone, and he has literally less than 10% of an immune system. He’s so vulnerable, and fragile. He’s so tired, and weak. He hasn’t eaten. They finally started to feed him through his G-Tube at 10ml of formula an hour for 16 hours a day. It’s not much, but it’s enough to keep his insides working properly, and offer him the nutrition he’s lacking. He lost 4 pounds already from not eating. He also won’t drink water, which was a symptom of the colitis we noticed right away. When he feels yucky, there’s just no input.
The magical bag of bone marrow is on it’s way from England. Technically it could be here already. I hope and pray all will go well for him. We will start to see side effects very soon, and he will also begin to lose his precious hair. Part of me wants to collect it all in a bag and save it forever. The other part of me wants to stop blogging and try to nap until Harrison wakes me up to eat again. Time to finish my beer. YES, a beer. Imagine that. You know what? I deserve it.
Happy Transplant To Lucas, And To All A Good Night!