It’s been 2 months since Eli and Jacob received their Bone Marrow Transplants.
Though they are starting to do more regular activities (some virtual school and playing), Eli and Jacob are still quite fatigued and dealing with a myriad of symptoms related to the transplant and the chemo. One of the longer lasting symptoms of chemo is that food just tastes weird. Imagine even skittles just not tasting right… ugh..
From his recent check-up we learned that Eli in particular needs to work on eating and drinking more food. The boys are still getting nutrition through their g-tubes, but the goal is to go off of those eventually. Ali did mention though that Eli did enjoy some super super spicy jalapeno guacamole recently – at least it tasted like something (though not particularly spicy).
Speaking of Eli – he had a big week. On Wednesday he had his broviac taken out. It was an outpatient procedure and went smoothly. There was some extra pain to deal with for a few days due to the surgical nature of the procedure. The good thing is that now, without having a central line, there is a lot less risk of infection (though he will have to get stuck for weekly blood draws). On Friday he turned 8 and ½! He and Jacob are growing up so much!
Jacob seems to be recovering from his viral infection that had brought him to the hospital last week. He’s a little weary of the hospital right now, and now asks if people will have to spend “sleeps” in the hospital when they go in for visits. He doesn’t want himself or Eli to have “sleeps” in the hospital. What a sweetheart.
The goal for him right now is to focus more on physical therapy. You can imagine that between the Chemo and the blood transfusion, viruses it’s easy for your muscles to get weak. So they are working on walking and strengthening.
Ali and Dave are trying to get sleep – the boys are so fatigued and often fall asleep quite early in the evening – but it’s a fairly restless night. Luckily Grandma Nancy came to help this week. It was a great treat for Eli’s half birthday!
Many of you have graciously asked what you can do for the Kulmans during this time. We have a few new suggestions. Please e-mail us at COTAforEandJ@gmail.com if you need their address.
- Gift Cards – instacart, grubhub, doordash – these are very helpful – especially on clinic days and hospital days!
- Stamps – do you have extra stamps left over from your holiday cards? We are collecting them and send them to the Kulmans to use for all their thank you cards. (You can drop them or send them to the address below)
- Valentines Card Drive – please consider writing a Valentine Card for Eli and Jacob this week. Please turn them in by January 29th so we have time to quarantine them and mail them. Shh! It’s a surprise! We will be collecting them locally in Falls Church (or you can mail them) at the house of Laura Brooks – 517 Meridian Street.
- All in for the Kulmans – Be on the lookout for an exciting announcement next month as we get ready to celebrate the boy’s 100th day with New Bone Marrow, Rare Disease Day and Dave’s Birthday – all on February 28th!
