UPS AND DOWNS

Cycle 4’s inpatient stay is complete! We are all back home at our apartment tonight, and happy to be back in our own beds! Looking back, this stay was full of ups and downs as we struggled to control Caleb’s nausea and keep him eating. He would feel pretty good, and then get sick, and then feel like playing, and then get sick, over and over again. He seemed to be more nauseous and more picky about food this cycle than ever before. His usual meds to combat nausea and upset stomach are Zantac, Benadryl, and Zofran. This time we also added Ativan to the rotation after he was so sick on the first day. This helped a lot and his appetite seemed to come back as the days went on.

We did our usual hospital activities… watched movies, played with toys in the room, and played in the playroom. One of the volunteers even did an art project with the kids which Caleb loved. I was glad he got to participate because it was nice to see him being a normal kid for a minute. Grandpa and Grebbie also visited before they had to head back to Florida. They had been busy taking care of Tyler but still found time to make Caleb’s favorite pasta dish which Caleb calls “Grandpa Noodles”. It doesn’t seem to matter how sick Caleb feels he always has an appetite for these noodles ha ha!

The hardest part of the stay was definitely seeing him so sick. I still hate watching the chemo go through the tubes into his body. That part never gets easier. But I did do a little cheer when the 6 hour Cisplatin drip ended. That was the LAST time he will (hopefully) ever get that chemo. He does not get it in Cycle 5. It is the one that does and will do the most long term damage to things like his hearing. It is a huge relief knowing that one is behind us, however we may not know the full extent of its effects for months or years.

My favorite part of the stay was when Caleb fell asleep on me for 3 hours! My legs were numb about 30 minutes in, but feeling his little breath go in and out, in and out in my lap was so sweet and so relaxing.

The funniest part of our stay was today when his Ativan really made him silly for some reason. He was laying around saying silly things, was a little unsteady on his feet, and kept wearing a paper bowl as a hat. It’s hard to find the humor in this part of the treatment, so he definitely made us laugh today!

Caleb also had an occupational therapy appointment today, where they basically check his fine motor skills. They had him draw shapes, cut on a straight line with scissors, stack blocks, and put pegs in holes. He passed with flying colors. He’s very strong on his right side and almost equally as coordinated with his left hand. I am always proud of him and how smart he is. He continues to amaze me every day!

Hospital stays are exhausting as we sleep on plastic couches, give Caleb around the clock care, and try to sleep through nurses constantly coming in for meds and vital checks throughout the night. So we are definitely happy to be home and hopefully get a better night’s sleep tonight. We were able to get discharged a day early because we agreed to come home with a hydration pack. So Caleb’s port is hooked up to a portable pump and big bag of saline that will keep him hydrated an additional 24 hours. The bag of saline is pretty heavy but Caleb insisted on wearing his own backpack so he could be mobile. He is so funny, and so strong, and despite the ups and downs I am proud of the way he handled the hospital stay once again.

We have a long day of appointments tomorrow beginning with a blood draw at 9am. We also have a speech therapy appointment and follow ups with neurology and his clinic. We will see where his counts are and hopefully get him off this hydration pump before the weekend. He also has to have an immune booster shot (which he HATES getting) and his last bit if chemo for this cycle which is a small bag of Vincristine (one of the chemo’s he’s on). They always give him one last small dose that acts as a boost. So, as I said it will be a long day but then we should be able to have a good weekend at home, and all together. I am definitely looking forward to that!