Hopefully you have read Part 1 of this update, and now I will give you an update on Caleb’s overall treatment. We were able to do many fun things the last couple months and I am so grateful for that. However we were still very cautious with Caleb and the places we went in public. For many outings he wore his mask and there was constant hand sanitizing and washing. The good news is we managed to avoid any inpatient hospital stays these last few months, however we did have a few trips to the ER and a few scares along the way.
All in all Caleb is doing well, however each cycle is taking about 2 weeks longer than originally planned. Each cycle, if it goes as it should, is 7 days on the oral chemo, and then 21 days off the chemo. There is some room in the protocol for delays, and so far even though we have been delayed we are still within protocol. Caleb’s counts have to reach a certain threshold before we can start the next round of chemo. His Hgb has to be over 8.0, his platelets have to be over 50, and his ANC has to be over 500. Each round it’s his platelets that have been the last thing to rise. They seem to take forever!!! The only good thing about this is his ANC has been up enough go out places and go to school for a few weeks here and there. I am sad that we have been delayed in our overall timeline of treatment, but the delays have allowed us to live a little more life in between each cycle.
We have bi-weekly count checks at our local hospital and they fax those results to St. Jude every time so our doctors at St. Jude always know what is going on. As I mentioned, we have had a couple of scary situations in the last couple months. The first one being the weekend we had double ER trips. We were having a normal Saturday when all of a sudden Caleb started to feel warm. We put him to bed but were watching him closely when he woke up about 11:30pm crying. Sure enough we went in his room and he was burning up. So James rushed to grab all the hospital bags (which we always have packed and ready) and loaded up the car. Off to the ER they went. However in the rush of things we forgot to put Caleb’s numbing cream on for his port. This was one of the most chaotic trips to the ER ever. Not everyone is comfortable accessing ports so they tried to find someone who was. In the mean time they brought James a different numbing cream to use on Caleb (one we had never used before). So James applied it to the skin over his port site. Almost 2 hours goes by and still no one has come to access his port. James tells the nurse “we need more cream!” The numbing effect peaks at about an hour and after that the cream isn’t really effective, and now they have been waiting too long. So the nurse comes back with LMX cream, which is the cream we normally use. James wipes the other cream off, and applies the LMX cream as usual. Well someone finally comes to access his port another 45 minutes later. They go to remove the cream and his port site is all red! Everyone panicked for a minute, because ports can become infected and it’s a very scary situation if that happens. But upon further investigation it appeared as though the 2 creams mixed together on his skin caused some sort of reaction. They called it a “rash” but I think it was more like a chemical burn to his skin. Thank God it was only topical and his port was not infected. They went ahead and accessed his port through the irritated skin. It didn’t seem to hurt or itch Caleb, thankfully, but it looked horrible! Caleb’s counts were pretty good that night and they couldn’t find the source of the fever, so they pulled blood for cultures, gave him a really strong dose of antibiotics, gave Tylenol for the fever, and sent them home. You can see the chemical reaction over his port site in these pictures…
The next day was Sunday. We could tell Caleb still didn’t feel well as he slept on the couch all morning. Then of course his fever came back again and was no longer being controlled by the Tylenol we had been giving him. This is always scary. We tried to wake him up because we probably needed to go to the ER and he was so hard to wake up. All he wanted to do was sleep. But when he did finally wake up one eye was smaller than the other and he just seemed completely out of it. We were so scared we not only took him to the ER, we mentioned the eye thing to his doctor and he ordered an MRI.
Waiting for that MRI was the worst feeling. I felt so sick to my stomach. I was scared of what they were going to find and I wondered if we were going to be starting all over again. Caleb did his first MRI with no sedation. It was a quick one, 15-20 minutes because they only did one pass, but I’m so proud of him. He has always had anesthesia for every scan up until that point.
Finally the ER doc walked in the room and said they didn’t find anything in the MRI. They didn’t know why his eye was drooping, but it didn’t appear to be related to anything in his brain. Thank God! At that time we had the fever under control again so they sent us home to monitor him closely. He slowly got better after a few days of rest. I think he just had some sort of bug but it was a scary experience! We don’t like fevers and we really don’t like going to the ER!
Over the course of the following weeks Caleb had to have a couple rounds of transfusions. This helps his counts stay in a safe zone while his bone marrow recovers. About a year ago at St. Jude he had an allergic reaction to one of his transfusions. This happens sometimes and once it happens they always give pre-meds before a transfusion to prevent this. He gets Tylenol, Benadryl, and Pepcid before every transfusion. So I was with him a few weeks ago when he needed a platelet transfusion. We gave him his pre-meds like always and they started the transfusion. All seemed fine. The transfusion finished and they have a required 30 minute wait period before you can leave to be sure there is no allergic reaction. I’m thinking we are good to go because we gave him his pre-meds, right? WRONG! About 10 minutes after the transfusion finished Caleb casually said “my back itches.” I looked over at him and he was breaking out in hives just like he did the first time this happened a year ago. I called the nurse right over. The biggest scare is an anaphylactic reaction so they ran and got every medicine on hand they might need. The nurse also called for Caleb’s doctor. I was scared because his face and body were covered in red splotches and hives. He was crying because he was so itchy all over. I kept asking him if he could breathe ok and kept getting him to talk to me. They gave him a second dose of Benadryl and also the steroid Prednisone. They had an Epi pen ready but thank God it didn’t come to that. I hadn’t been that scared in a long time. It just goes to show on any “normal” day you never know what can happen. They kept us under observation for another hour or so and then let us go home with additional doses of steroids and also Claritin, which is longer lasting than Benadryl. He was fine once we got home but we had quite the scare!
By far one of the best things about TGH is their Child Life team. Once they heard what happened to Caleb they brought a team of special visitors that came with a bunch of toys to cheer him up. This made him forget about the rest of his itching and we just played until he felt better. Child Life is amazing at distracting the kids from what’s actually going on. I’m so thankful for them!
Other than those events, treatment has been pretty smooth overall. He is not fun to deal with on the days he is on chemo, but after a year of experience with it I know how to handle him now. I just try to make him happy until he naps and can sleep it off ha ha!
I am excited to officially type that we are about to start our LAST ROUND OF CHEMO!!! We are still waiting on Caleb’s platelets to come up, so we are already a week late getting started. I am anxious to get this last round underway. We are due for post treatment scans at St. Jude as soon as this cycle is over, so as soon as we get started we’ll be able to figure out what week in February we’ll be traveling to Memphis. I am not looking forward to the next few weeks. He’s tough when he’s on chemo and he usually doesn’t feel that great the week following, so it’s 2 rough weeks ahead for us. But I feel like I can get through it easier this time knowing this is the end.
I will keep everyone updated (I Promise!) on when we start the last round and when we will be going to St. Jude. Please send prayers and good vibes our way. It’s been a long haul but we are almost there!!!