As predicted, Bodie’s IVIG (Intravenous Immunoglobulin treatment) last week did a number on him. A lot of kids (and adults) who have to go through IVIG treatment have a rough time with the side effects, which can include chills, fever, flushing, headache, nausea, vomiting, stomach pain, joint pain, low back pain, and tiredness. Sounds super fun, right?

The list of super fun symptoms can happen during or after treatment. In Bodie’s case, despite being premedicated with Benadryl and Tylenol, he tends to do fine during the infusion itself, but then has a delayed reaction where a day or so later, he starts feeling generally crappy – and stays that way for a good 2 or 3 days. So, true to form, Bodie was fine on Thursday when we got home, then woke up Friday feeling terrible. Spent all day Friday and Saturday feeling like he had the flu. It makes me so sad, because it always feels like a step back when he’s doing so well and then has to go through it all over again. I have to keep reminding myself that it’s just from the IVIG and he’ll be back to feeling better shortly.

Thankfully, he was feeling better by yesterday afternoon, and actually WANTED to take a walk last night! I was shocked – this is a kid who has never wanted to exercise, either before or after transplant. (Before he didn’t like to because his endurance was so low, and since transplant he hasn’t wanted to because, well, everything hurts and he’s still healing.) But he wanted to go Pokeman hunting – so we did. We started walking…and kept walking…and walking…we ended up walking over 3 miles!

He wanted to keep going, but I made him stop because it was late and he had early clinic appointments this morning. But he totally could have gone longer. He was so proud of himself!

The best part was when he said to me “You know, mom, it’s weird. Right now, my legs and my feet heart” (partly because he was walking in slides), “but my heart feels fine. Like it doesn’t hurt at all. You don’t get it because you weren’t in my body before. But it always felt like something was putting its arms around my chest and just squeezing really hard. There was always pressure. That’s why I was always out of breath and could never run around the house or anything.”

To hear him be able to voice that change was incredible for me. Totally made all of this hard work and rehabbing him worth it!

He had labs, an echo, ekg and clinic appointment this morning and everything looked great! Praise God!

As we keep moving forward in his healing, we still desperately covet prayer for the following:

1. Please please pray for his vocal cords. He has appointments with ENT and Speech Therapy tomorrow morning. This will be the first time we’ll get a look at his vocal cords since he was in the hospital. These appointments are really stressful for him, not to mention extremely uncomfortable. He SO wants to be able to drink again, and to get rid of the NG tube! We know it will be a process, but please please pray they see some improvement and he’s allowed to drink again! He’s still so quiet that we don’t know if they’ll see any change. But he’ll be so demoralized if that’s the case, PLEASE pray for healing of his vocal cords!
2. Please pray for his Donor Specific Antibodies to remain at 0. The IVIG is really hard on him, and he has to do it monthly until he gets 3 consecutive negative DSA blood tests. His bloodwork done in July was officially his first negative. They took blood before last week’s IVIG test, and we should get those results this week. Please pray that test will also be DSA negative. If it is, all he will need will be one more! That would mean his IVIG infusion in early September could be his last if that one turns up negative as well! Please, please pray the tests all show no DSA antibodies in his system.
3. Please continue to pray that Bodie stays healthy and his stamina continues to improve. We know he is only doing as well as he is because so so many of you are praying for him – please don’t let up now!
4. Please pray that we are able to work out the logistics of school and coming back home next month. We’re figuring it out, but there are a lot of moving pieces and it’s weighing heaving on my mind. Please just pray we work it out in the best way possible for Bodie and set him up for success in this coming school year.
5. As always, please continue to keep his precious donor family in your prayers. They are never far from my mind and we will forever be grateful for the gift they gave to our son amidst their darkest of hours.