This past week has been a busy one. On Monday we had to be at the hospital bright and early for Collin's mediport to be replaced. These procedures are getting harder as he is getting older, because he's more aware of where he is and what is being done to him, and he is able to voice his displeasure. Once we got to the same day surgical unit and I got him changed into the hospital gown, he screamed and cried "I want to go home Mom, I want to go home!" It was so hard not to just scoop him up and run out of there. I held him and tried to soothe him, and eventually he calmed down. When they were ready for him in the OR, I walked him there and kept my arms around him as the anesthesiologist tried putting the mask over his face. He always fights the mask, crying and trying to push it away. For the MRI on October 26, when the anesthesiologist saw him fight the mask, she took the mask off, and just held the hose under Collin's nose, which worked well. So in the OR I asked them to take the mask off, and I held the hose under his nose. He stopped crying, and in a few short minutes, he was drowsy enough that I could lay him down, and then we put the mask back on. Once he was asleep, I kissed him and went to wait. After about an hour and a half the surgery was done and they called me down to the PACU where Collin was already waking up. We moved to recovery, and eventually were released. This time the mediport is in the middle of his chest, right above where the broviac was. So now he'll have two more scars on his chest. When we finally got home later that afternoon, I was exhausted. Spending the day at the hospital like that, being under some amount of stress (even if I didn't realize it in the moment), and trying to keep an active toddler happy and entertained is very draining!
Tuesday morning Collin had speech and occupational therapy. His OT knows that he loves Mr. Potato Head, and she gave him a Christmas Mr. Potato Head. Collin didn't let that Mr. Potato Head out of arms reach all week! The first day, he carried it around saying, "I made this" over and over. He has insisted on taking it everywhere with him, and would get very angry every time the feet fell off, so on Thursday night I glued all the parts on so they won't get lost.
Wednesday we took Collin to the barber shop and had his head shaved. Of course I cried, but Collin just sat so bravely and didn't make a peep. His head is nice and round, and he still looks really cute bald.
Thursday I spent the day running in all different directions. I cleaned the house, got caught up on laundry, went to school to have lunch with Neya and observe her class, and packed for our weekend at the hospital. Thursday night was Collin's last dose of oral chemo in this round. Thankfully he tolerated the ten days of chemo very well, and didn't throw up once.
Friday morning I got Neya on the school bus and then Collin and I headed to the hospital. His first appointment was another hearing test. This time the audiologist was able to get better participation from Collin since he has made so much progress in speech therapy over the last few months. He could follow directions, point to pictures appropriately, drop pegs in a bucket on cue, etc. However, the results indicate some significant high frequency hearing loss in his right ear. He had no response to the high frequency sounds that were played in his headphones, sounds that I could hear sitting next to him. He also seems now to have some high frequency loss in his left ear, although it is to a lesser degree than his right ear. At this point the hearing loss in his left ear is not enough to affect his learning speech, but the audiologist wants to keep close tabs on Collin and will see him again in December. The audiologist said she would delay fitting him for hearing aids since he's dealing with so much right now, but I'm guessing that sometime in the next six months he will get them.
After his hearing test we continued on to the clinic, where Collin was examined by Dr. Comito. We talked a little more about the treatment plan; Collin's next MRI will be on December 9, and after that we will meet with Dr. Comito, a neurosurgeon, and a radiation therapist who will discuss the Gamma Knife procedure and start talking to us about radiation. Dr. Comito has only had one other patient relapse after being treated using the Head Start protocol that Collin was treated under. I find that very worrisome, because to me that says that Collin's cancer is very aggressive. She has told me however that that one relapse is still doing well two years after the fact. I know she doesn't want me to lose hope, but the fear is unbearable some days.
After talking with Dr. Comito, Collin's new mediport was accessed by one of the nurses, and then we had a leisurely lunch while we waited for the room to be ready. Bill spent the morning steam cleaning our carpets at home so everything is clean for Collin, and then came to the hospital and helped get our stuff up to the room. Collin was started on IV fluids for a few hours to hydrate him well. Then he was given anti-nausea meds, and then the Cytoxan chemo ran from 7-8 pm. The rescue agent, Mesna, ran for the next 12 hours, and he was given lasix as well to help his body clear the chemo, which meant a busy night of changing diapers (and pjs and bed linens when the diaper leaks).
The IV hydration continued for the 12 hours following the Mesna. We got Collin out of the room for a while this afternoon; he was able to walk to the playroom, which was exciting because he could never do that before. I can't figure out what he remembers from his hospital stays last year. He keeps looking down his shirt at the IV lines hooked up to his mediport, and of course doesn't understand when I have to keep him from doing certain things like getting out of bed on the side opposite the IV pole because I don't want him to yank the lines out of his chest. We have managed to keep him fairly entertained with the help of Godparents and Grandparents. He has seemed to tolerate the chemo very well so far, has eaten here and there, and hasn't been vomiting at all. Tonight the chemo was run again on the same schedule as last night, and we should hopefully be able to go home tomorrow afternoon. Both last night and tonight Collin tearfully told me he wanted to go home, and it breaks my heart. Thankfully this stay is short, but there is a likely chance we may be back by the end of the week for a fever. We will have to give the GCSF shots again at home to boost his white blood cell count, and he will most likely need a platelet transfusion at the clinic around the middle of the week.
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