We are at clinic today. Colin made his counts. This means his white blood cells, platelets, absolute nuetraphile and hemoglobin levels are all high enough to handle this next round. So we begin round #6. With this round I get to give Colin 5 days of chemo shots at home. He does not seem too thrilled by the thought of this. Well, neither am I. Goes onto that list I have of Things I did not expect to have to do as a mother. But what do moms do? Get their crap together and move forward. My first practice shots into a pretend arm made me a bit nervous, ya know, ,butterflies in the stomach. But its not so bad. I will get more practice with the home care nurse tonight. I dont have to do it. We could check back into CHOP and be in patient. But if I can do it, then we get to stay home and travel back and forth to clinic over at King of Prussia for monitoring and another chemo med that is an infusion. Side effects of the meds include fever, rashes, flu like symptoms, etc. So the bag is still ready for the trip to CHOP. But fingers crossed he sails though this. I dont mind clinic. The nurses make it feel like family. Warm, cozy, friendly and as always super professional. There are 5 other children here with Colin receiving chemo. How normal it seems. If Colin stays on schedule he will be done with chemo is 63 days. Then we start with follow up, have his broviac removed ( the kid is counting the minutes until he can go in water), and begin being a part of the survivor-ship program. He will be monitored for relapse and live a normal life. Every day further removed from having had cancer. There will likely be physical therapy to recover all the muscle mass loss. Colin will ask me, so what do we do, what will happen after this? What will happen I hope is we can get off this tight rope we are constantly walking on. Such anxiety. Constantly having mental and physical exhaustion will begin to abate and life will get more normal. I will begin to sleep again. Not hear beeps in the night or have to monitor his gtube feeds. Not set that alarm to give him meds at 2 am. Stop sleeping with one ear always alert to Colin calling out. Not having a bag packed ready to go to CHOP at any moment. That will be nice. But then I worry about moving on. Living without doubt or concern. Going back to living with confidence and that naiveness that exists that bad things wont happen to my family, that it happens to other families. Things I dont want to happen to anyone else. There is still time to adjust to being normal, have to get through these last rounds first. And giving him shots. One day at a time.
Posted on: Tue, 15 Jul 2014 15:26:37 +0000
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