After MIBG did not work out for us, the doctors wanted us to start Payton's round 4 of chemo right away. We were so excited and happy to see our Hopkins people! On Monday, October 17 we admitted to Hopkins 11S and started round 4 of chemo. This round of medicine is short, only a two night stay in the hospital for injection and hydration.
This round had new medications for Payton and the expected side effects were increase nausea during injection. Payton was right on schedule with the nausea despite round the clock zolfan (nausea medicine). Besides the nausea and throwing up a few times Payton was feeling fairly good when we went home on Wednesday, 10/19.
Paytons 2nd Birthday was the next day 10/20! She woke up feeling pretty good and eating normal. By that night she was starting to feel crummy with some nausea and just not herself, poor girl. That weekend she was starting to feel a little better but was having some loose/water stool. Monday we had our outpatient clinic visit and Payton needed a blood transfusion (very common when going through chemo). That night we get home and Payton spikes a fever. So right back to Hopkins ER we go. This night or morning (2 am) we were admitted to 11S.
Payton fever was most likely caused due to her ANC being zero and blood counts being low. She was also still having loose/wet stool that was causing a very extreme diaper rash. This rash was worse than we had seen before and just would not go away. We found out she was positive for a virus, but nothing serious. We kept trying different creams and methods to get her rash under control. When getting admitted for a fever blood cultures are taken to rule out any infections from her central line and antibiotics are started. She will need to take her antibiotics until her ANC count gets to 200. This typically takes about a week. So this admission was just monitor Payton's diaper rash, getting her antibiotics, and just waiting for her ANC numbers to start going up. All her blood cultures were clear.
While inpatient Payton needed a good amount of blood transfusions, including platelets and red blood. It was explained to me since her bone marrow needs to work hard to recover after each round of chemo, sometimes the further in to chemo rounds the bone marrow is tired and needs some additional support to wake back up. This means more blood transfusion. After a week inpatient Payton was feeling so much better, her rash was under control and almost cleared up, and her ANC jumped up to 1000!! We were ready to go home on Halloween!!
Halloween at Hopkins was fun! Before we discharged Payton was able to "trick-or-treat" hospital style. This was awesome. They did a type of reverse trick-or-treating were hospital staff round each unit bring the children all type of goodies. This included some candy and lots of fun knickknacks. Payton had a ball and was dressed up as a witch. Round four treated us ok, she did fairly well and was now ready to go home for some recovery. Jeff and I had decided to decline the rescheduled MIBG treatment, as it just did not feel right putting Payton through that stress again.
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