Caleb’s counts have been dropping, and even though he manages to still have a good amount of energy during the morning, he definitely needs to rest a large part of the afternoon. He has been a bit more irritable during this time, as usual for this part of the cycle. Of course that’s completely understandable given what he’s going through. So let me catch you up on the last few days…
We had a rainy weekend, which is a bummer when both kids are home and Caleb’s counts are dropping. We played at home Saturday morning and then Caleb became very tired and needed to rest. He fell asleep so James stayed home with him and I decided to take Tyler to lunch and out for some errands. It was nice to have some mommy/son time and we had a lot of fun having lunch at McDonalds and then going to Walmart. He usually manages to talk me into a small treat or toy so he doesn’t mind running errands with me ha ha!
Sunday was still rainy so we just hung out at the apartment. Finally in the afternoon there was a break in the rain and the kids got some outside play time. They love to ride their scooters and play outside. Caleb is getting really steady on his scooter, and even though Tyler is much faster, he let Caleb win one race so he would feel good about himself. Tyler thought of that all on his own. He is the sweetest brother.
And while we are talking about Tyler for a minute I have to stop and brag on him since I don’t always mention much about his day to day activities. He has been thriving at school and is starting to read! He’s been working so hard at learning his site words and reading his beginner “Bob Books”. He is so proud of himself and it has been one of the most rewarding things to watch as a parent. He has 1 sheet of homework every night and always does a great job. He enjoys his after school activities of Music class and Gymnastics, and in another week or so he is going to start T-ball. I am just so proud of how focussed he is in school and how much he cares about his little brother. He is turning into a great kid and I probably don’t say enough how proud I am of him.
Monday we had a couple appointments for Caleb at St. Jude but they were “fun appointments” as we call them, meaning no needle sticks, anesthesia, chemo or anything like that. His day started with Physical Therapy. As usual they were impressed with Caleb’s balance and coordination. He got to kick bowling pins down with a soccer ball, climb stairs, walk a balance beam, and ride a scooter!
Next was a dental appointment. Caleb hasn’t had a dentist appointment since we arrived in the Fall, so it was good to check in and see how he is doing. I have been worried about the damaging effects of the chemo but the dentist said his teeth look great! That was a such a relief to hear, but then again we are pretty strict with Caleb’s mouth care routine. We never let him skip brushing his teeth or doing his mouthwash. It was nice to know that so far that is paying off. Caleb just loved the dentist because they had a TV above the chair, and he got a goody bag with a new toothbrush when he left!
Today (Tuesday) we had appointments to check his counts and hopefully get admitted for our Cycle 4 inpatient stay. Unfortunately his counts were not quite where they need to be to start the next phase of cycle 4, which is the high dose chemo. We will re-check counts again on Thursday. Of course this is upsetting but has happened to us several times before so we knew it was a strong possibility. We had everything packed and ready to go anyways, but we will just wait until Thursday and hope we can be admitted then. This is a tough one because as we get closer to the end of our treatment plan here, any delays put going home just a little further away each time. This stay is also a bummer because now we are definitely going to be in the hospital on Easter. I am grateful that we have dodged this for Christmas, and Caleb’s birthday, but it’s still a little sad to know we won’t be having our normal Easter fun at home. We may celebrate Easter early tomorrow so the boys can do their egg hunt together. We’ll see… but either way our doctor assured us this is all normal at this stage in treatment. His body has been knocked down hard with radiation and now going on 4 cycles of chemo, so it’s not surprising that it takes a little longer each time for his body to recover. I completely understand and it’s nice to have that assurance from him that this is all normal, but at the same time, I want to go home!!!!
We are hopeful that Caleb’s counts will be high enough to be admitted Thursday and we can continue to move through Cycle 4. Luckily Grandpa and Grebbie came in town today for support, so they are ready to help us whenever we do get admitted. It’s really nice to have their help with Tyler so that James and I can be together with Caleb most of his stay. I will update again on Thursday when we get another look at Caleb’s counts.