Clinic/Unit 1
Weight: 13.4 kg
Nurses: Charmaine/Paula
And we are back at it...
After a fantastic 5 days at home we needed to come back today to start your next round of chemo. I have to tell you this was a pretty difficult morning. You had such a good time at home that you finally relaxed and we got to see more and more of your personality. So, when I had to tell you this morning that we were going back to the hospital you were not very happy. You cried and cried and even had a few fits, then in clinic you kicked and punched at dad and I. We did eventually calm you down and we talked to you about being in the hospital again and the importance of getting the meds in the hospital. You know that eventually you will be able to go home again, once you had all the meds, but its very hard to explain it. You spent a whole day in clinic and had a LP at around noon to start this next round of treatment.
This round of treatment is Cycle 4 and the first dose of Consolidation called CYVE. You have five days of new chemo meds (Cytarabine,(Ara-C) and Etoposide (VR-16)) and then on day 18 you will have Methotrexate again and a 2nd LP on day 19. Given its new meds, we are not sure how your body will react, you have never had nausea and I hope that continues. Etoposide does have mouth sores as a side effect, but it is only common in high doses. You are not getting a high dose of Etoposide, but given you have shown a sensitivity to them and in most sensitive patients, mouth sores occur, we are anticipating but not expecting them. The doctors are thinking that you will have a quick recovery after the Methotrexate and hope your counts will stay up so you can start the second dose of the Consolidation right after this 21 day cycle. This means that we probably won't be able to travel back to the Hat this time. Not the greatest news, but during the second dose you don't get the Methotrexate on day 18 so we will probably get to go home for awhile longer. We have to remember the closer we keep to the treatment plan the faster we will be done.
After your LP today you are starving. When we were home you only ate chocolate chip pancakes, so dad was smart and packed a cooler full of pancakes (see picture). Well, you surprised us by eating 9 pancakes in clinic and by the end of the day you had polished off 15 total. It makes me sick watching you eat so many pancakes. I don't think I will eat pancakes again!
Besides eating pancakes, you spend the day watching TV and the other people in the clinic. We are not admitted to Unit 1 until 4:00 pm. We end up with Rm. 9, which is a corner room on the unit. We have a lot of windows and you can see the delivery trucks come and go. After moving in and eating some more pancakes, you settle in and aren't too upset with having to stay again in the hospital.
You do have to start your continuous dose of Ara-C at 8:00 pm and it runs through the night. With this chemo med you have to have eye drops every 4 hours. These eye drops sting and you are not a fan. This means you do have a bit of a broken sleep. Besides all this going through the night, your dad was able to sleep in his own bed for a few hours. You did wake up screaming at dad at 4 am, demanding that he sleep in your bed with you. Dad stayed strong and finally got you back to sleep, in your own bed, without dad. Way to go dad!!
Well, I hope you have a less painful round this time. I will pray that you stay strong and your spirits stay high. You are such a warrior!!!
Love you buddy,
Mom
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