Day+1- the start

I can't believe it's over. The bone marrow is there, in his body and (fingers crossed) getting to work. It's such an unusual sense of relief. Presuming that all goes well, it will be years until the EB is gone, but by day +60 we should see some marked improvements in his skin which also means improvements in the quality of his life. I'm so very excited. I can't wait to see him play with others, and not be in pain. I can't wait to really hug him. It's been hard to watch him suffer and then suffer more when I comfort him. Brian really seems to think that he'll be healthy at 5; I don't know why. Five is a good number, though. I would definitely be happy if that were true.

So, it's the start of good things to come. Now for the unfortunate truth: it's also the start to some bad.

Yesterday afternoon Daylon started crying and was inconsolable. Once I got him to sleep, I noticed he was having a tough time breathing, then he woke up and started gagging. We thought he was just going to throw up (which is odd since he's not eaten anything at all for two days) but then he started to not be able to breathe in. The mucus membranes were rupturing in his throat and he was choking on the fluid. Within a few minutes and several hardy chokes, his eyelid started bleeding and blood was going into his eye. This dry heave thing went on for three hours. There was nothing they could do. You can't suction because his mouth would tear. He cried and cried. His cry is just this pitiful, sad break your heart sort of sound. The parameter of his tongue looked like a turtle shell with mounds of blisters. There were on the roof of his mouth, his gums. It was overwhelming how fast they sprung up. Some bloody. Some regular. They eventually gave him a few doses of morphine and he fell asleep around 3:30 a.m. He woke up this morning and it was the same thing again. Instant crying, choking on mucus (result in bubbles near the size of his head. No joke) and breaking blood vessels . His tongue is so swollen it rests on the his bottom teeth. It's so blotchy and painful looking. He can't sit up on his own anymore and even with help he struggles.

before chemo

today

His skin has become a story of it's own. It's like he's a newborn again. The blistering is becoming more than I can keep up with. The slightest touch, and he blisters. Spontaneous blistering is what it's like. No matter how gentle I try to be, I still hurt him. I hate being the source to his pain. I kissed him last night and he blistered. That hasn't happened in months. Overnight, his chest looks like ground beef. He is in more pain than I can imagine. The constant Morphine drip is the only way he's napping now. This is the hardest things I've ever had to do. My precious little boy has suffered more than I've ever seen another suffer and now, he suffers more. The Dr.s say that with his form of EB, the mucositis is hitting hard and hitting early. We knew that was a risk. We knew that was a risk and we took it to try and save him. Now that's it's happening, it's hard to internalize all of it. The doctors have told us that it will get harder over the next 10 days and he'll continue to suffer for the next 20 until Caleb's bone marrow starts to produce cells. I'm not sure how that's possible. My point is, this morning I felt like I did a few days after I had Daylon. I was crying like a hormonal post-birth mother, feeling so scared and unsure of what was in store for my son. When Daylon was diagnosed, I remember walking out of Dr. Metz office and making it to the elevator before Brian and I started crying. I've never felt so lost. It was us against this horrible disease that I had never even heard of, and all we knew was that within a year, the disease would win. Nothing could be done. That is a feeling that no one should have to experience. Overtime, we've educated ourselves and tried to give our son a meaningful happy life, no matter how long. It's brought us happiness in return. Today, when that feeling began to take over my mind, Brian and I prayed together and began to talk about all of the people in our lives who offer us so much love and support. We read the comments that you all have posted and retold each other of the acts of kindness we have seen and felt over the last 11 months and the best thing happened.That awful feeling went away. I know we're not alone in this. We have you. Thank you so much. Thank you for praying for our son. Ya know, his skin has cleared up so much over the past two months that everyone around here is amazed at how he looks. His skin durability tests extremely low, but his skin looks so good. I know in my heart that it's because so many people are praying for Daylon. I also know that if his skin were to have stayed the same as it was a few months ago, the effects of the chemo would have been fetal. I do not think that the Daylon's condition as of March could have handled such a severe reaction. We really feel that it's saving our son's life right now and it's giving us sanity. From the bottom of our hearts, thank you.