On Saturday we had the pleasure of the Stake President and John C. Pingree Jr. of the Seventy visit our home for a visit Saturday. It was Stake Conference weekend and it was nice to have them come talk to us in our home and provide some spiritual comfort.
We also had fun going to a movie and carving pumpkins. We were so glad Nick was up to all that and enjoyed it!
Monday, Halloween was Nick's regular clinic visit day and so off we went to clinic and my wonderful parents went to Kate's Halloween parade! Thanks Mom and Dad! Clinic consists of blood draw, meet with doctors and then procedures and chemo depending on the schedule!
That day Nick was scheduled for a Lumbar Puncture and two types of Chemo. He had his blood draw and then we met with his doctors and then down to the Childrens Procedure Center for the Lumbar Puncture. We got back up to clinic to start chemo around lunch time. One of the chemo's was just a push in his port the other was a 2 hour drip. The chemo for the drip was a treatment he had once before in phase one of treatment. They watch you closely when you get it the second or third time as around 10% (what we were told) of kids have and allergic reaction. Nick got thru almost the entire 2 hours and during the flush started saying he was cold and shivering uncontrollably. He had like 7 blankets on him and was just shaking and then he said his chest was hurting. A lot of doctors and nurses started coming in his room and it was decided to stop the flush for the last remaining medication and determined it was likely an allergic reaction. Nick was given a high dose of Benadryl and Steroids to help counter the reaction, and an EPI shot was prepared and ready if needed. The Rapid Response Team from ICU was called up to analyze the situation and it was agreed by all that he would stay overnight in ICU. There they could monitor him and make sure he was safe.
It was a pretty scary experience for Bryan, Nick and myself. So glad all the doctors were there to make the right decisions for Nick and take such good care of him. We are so grateful for Kathy, the social worker at Primary's, she came up and was so great walking us through what was going on and preparing us for ICU. She is the best. We are grateful for the clinic nurse we had that day who was quick to react (despite his reaction being so unusual) and I am appreciative to her for talking so kindly to Nick when they were getting him ready to transfer to ICU. He was scared and she spoke to him calmly and kindly and told him everything was going to be ok and to just keep breathing and try to stay calm. It was amazing.
Nick was released from ICU by mid-day on Tuesday and sent up to ICS (Immunocompromised- Cancer- Transplant unit where we always stay) for another nights observation. He came home late yesterday afternoon after getting a blood transfusion to boost his red blood cell count. We are glad he is home... he has been having issues with fevering since we got home and hope he will start feeling better so he can squeeze in some more fun! Love that kid and we are so proud of him. This battle is hard and he has been so strong and brave.
I have to share one more thing because I don't want to forget it! Nick is a sweet kid and over the last few weeks I have observed, often on the days where he is feeling his lowest that he is quick to share his gratitude. I have now observed him personally thank his nurses in the kindest and most humble tone. He thanks them by name " Thank you Meg!" or "Thank you Rachel!" It is seriously the sweetest thing I have ever witnessed. He does this also with me, often in the middle of the night when I get up with him to go to the restroom or fix his feeding tube or get him meds. Its always followed by a "Thank you Mom!" In ICU Monday evening he and I were alone in his room- as I sat by him, I noticed him watching out the glass doors, where all the nurses and doctors were going by. He turned to me and said " see all those people, taking care of me, taking care of others- I wish I could take care of and help someone and didn't need all those people taking care of me!" It made me cry. That kid is going to grow up to do something amazing, of that I have no doubt!!
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