Monday evening (Aug 20) we had an appointment scheduled with Wish Granters from Make a Wish (they coordination between the families and the local Make A Wish office). They came with a box full of new fun toys for the kids. The kids were sooo excited, it was like Christmas!! It kept the kids (along with Grandma and Aunties help) entertained so the Granters could sit down with Channing and ask him what things he liked to do, eat, play, read, watch etc. Channing was being shy and would only whisper the answers in my ear. I noticed Chan was warm and was acting a little more lethargic them normal, but wanted to wait until the Wish Granters left before I checked his temperature. Channing wants to meet Buzz Lightyear, Woody, The Pig, The Dinosaur, and Jesse Girl for his wish. He asked to go to Disney World in May to meet them for his wish.
After the Granters left I checked Chan's temp and it was above the 100.5. I called the on call Hem/Onc and we were once again sent to the local ER. Jakob, and Grandma joined us. Thankfully after Chan's last inpatient they gave us a few pediatric port needles so the local ER could do the port culture. They accessed Chan's port and drew the blood and culture. Then they took Chan to do an x-ray. I figured it was normal procedure and that nothing would come of it. Unfortunately, that was not the case. There was haze on his chest x-ray and Chan had pneumonia. They gave Chan some IV antibiotics, and were waiting to hear back from the on call Hem/Onc to see what they would like us to do. I assumed, as did the ER Doc, that we were heading back up for another inpatient. It was after midnight and I was exhausted and feeling defeated.
There have really only been a few times (after initial diagnosis/the first month) that I have felt defeated. I felt defeated when Chan's first 2 inpatients were postponed. I felt defeated when I was 9 months pregnant and Chan's last inpatient was postponed. I felt defeated at his last inpatient when they said that we couldn't go home on Thurs (thankfully Chan's regular Doctor saved the day!). (I guess most of my biggest feelings of defeat are based around an inpatient...). But at midnight in the ER thinking we were going back up to Madison while my mom was here, and after just being inpatient the week before, I felt defeated. There was nothing I could do about it, but I wasn't very happy about it. I realized then that this is the way it was supposed to be during the first 6 months after diagnosis. We were 'supposed' to have multiple unscheduled inpatients. We were 'supposed' to be in and out of the ER with illness, and fevers. Most children do. The nurses still talk to me about how they can't believe that it all worked out with Channing's last inpatient and Ellery's birth. For most its not like that. For most children with cancer they are in and out of the hospital, in and out of the ER just waiting around every turn for something to change and force them to go back in. We have been blessed. We are the lucky ones. I thought of the few little ones that I know with cancer and I know that they have dealt with that. I sometimes feel like I live in this weird dimension. I don't quite fit into the 'real world' but I don't quite fit into the 'cancer' world either. Our experience has been nothing compared to a lot of kids with cancer. Maybe its some sort of survivor guilt type thing, I don't know....
Anyway, enough of my tangent ;) Around 1:00am the Doctor came and and she said that as long as I felt comfortable with it the Hem/Onc would let us take Channing home because his counts were good, and he looked so good for having pneumonia but if anything changed to call right back. I was soooo grateful. We got home around 2 am and were all pretty exhausted. We took it pretty easy for the next 2 days. I was afraid of making any plans for the next week because I was worried that Chan would spike a fever and we would be back to inpatient. Thankfully, Channing seemed normal pretty much the next day and never did spike another fever.
At last weeks port flush and physical all signs of Chan's pneumonia were gone. And Chan has been acting just fine!
And today.... Chan and Jakob started their first day of Kindergarten!!
I am worried about all the germs, that they won't wash their hands enough, and I'm worried about the fact that the boys are in different classrooms so more possible areas of contamination, but this is life. This is what it should be. My boys are growing and learning, and as much as I would like to keep them safe and isolated forever I can't. Now, I get to have some time with Ema and Ellery every day (what are we going to do???). It will be good for me and Ema to have some special one-on-one time!
you are very inspiring and courageous. we keep you in our prayers.
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