Later that afternoon I received a call from Nick's Oncology Care Coordinator- Chelsea. We love Chelsea, she is so helpful and nice. She graciously puts up will all my calls and emails, gives us our treatment calendars and explains every treatment phase. Chelsea called that afternoon to explain that due to a national shortage of Erwinia they would not have it available for Nick's Monday scheduled Erwinia. He had received 2 doses of the 6 he needed and at that point it was unclear if he would be able to receive his last four doses.
Monday, May 1st instead of going to clinic I took Nick out for a walk in his wheelchair and we went to the library! It was a very nice day! Tuesday, May 2nd we received another call from Chelsea saying they had managed to get some additional doses of Erwinia from another hospital and could possibly restart his shots on Wednesday. There was not enough to do all four shots that Nick would need to finish the full dosage. There were 2 other patients that needed the Erwinia as well and they were waiting to hear back what the doctors decided to do on them and then for the Pharmacy to hear back about obtaining more doses from the pharmacy company that produces it. She said they would call us as early as they knew anything on the additional doses on Wednesday. We found out that basically one company makes this chemo, it is for a very small percentage of the cancer population as it is only used to treat Leukemia and only for patients that are allergic to Pegaspargase chemotherapy! Wednesday was a wait and see day, we stayed home so we could head up for the Erwinia as soon as possible. He had another chemo scheduled on Thursday that must be administered 24 hours apart from the Erwinia. About 2:00, I received a call saying yes they were able to confirm they would have the additional doses and thus he could come up for the dose they had from the other hospital. We got to clinic just about 3:00 and he had his Erwinia shots. Home health had come that morning for labs and his CBC came back while we were in clinic. His counts were high enough for his count dependent chemo the next day but his red blood cells were quite low. It was determined they would do a type and cross for the blood match and he would get blood when we came back the next day.
Thursday, May 4th we got to clinic at 10:30. He got an infusion of 2 bags of blood. (Thank you to all of you out there that donate blood or platelets- love you all!) By around 3:30 he got his scheduled chemo of Methotrexate. They ended up holding his Vincristine and starting him on a medication for the nerve pain he was starting to experience. The Vincristine is the chemotherapy that affects the nerves at the end of his fingers and toes, to this point he has only had issues with his feet and toes. They had been numb for a while but that had been improving, he can now move them well but has nerve pain instead. We also saw our doctors that day and got some disappointing news that one fungus sample from the biopsy had been lost/ misplaced by the lab and never got sent to the University that was going to be running the DNA testing on it. The sample they have still has failed to grow any fungus for meds to be tested on either. They can see the fungal cells under a microscope and identified them as Candidiasis which was their guess from the beginning. Our hope is the samples will grow something so we can find the most effective way to treat it. Fingers crossed!
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| Clinic infusion room- Nick getting blood. |
Friday, May 5th was a crazy busy day! I got a much needed mom/caregiver break, a nice morning at the spa for a massage and pedicure and sushi lunch with two of my dear friends! Bryan stayed home with Nick and I met them up at clinic about 2:30-3:00 for Erwinia shots. Bryan left right after the shots to go to Kate's gymnastic meet while Nick and I hung out for the required hour. We had a nice long visit with Nick's doctor- Dr. Barnette. Nick was full of stories that day and we had some good laughs. We went to leave and were practically out the door when Nick decided he wanted to go back up to the fourth floor and visit the inpatient nurses. Two that Nick really loved were there- Kate and Kiara. It was great seeing them both again.
Saturday, May 6th was a great family day! Our family along with some other Primary Children Cancer patients had been invited by Tacky Fly Fishing for a fun day of fly fishing and other activities. It was at a beautiful place called Falcons Ledge in Altamont near Duchesne. They have around 8 ponds on their property. Not only was it beautiful and so nice to be outside the entire day, we all had a fantastic time. We all learned how to fly fish and everyone caught a fish or two. They had 2 fly fishing guides per family and they really did all the work. Ours were Tim and Shaun and they were awesome. They were wonderful instructors and were wonderful with the kids. We got there around 10:30 and left about 4:30. Nick unfortunately sprained his ankle toward the end of the day but he still stuck it out for a couple more hours because he was having such a great time. It was a full day and Nick was exhausted on Sunday but he said it was worth it. It was by far one of the best days we have had since Nick was diagnosed in September. Huge thank you to Tacky Fly Fishing and their sponsors for putting on such a fantastic event!! We all want to go again it was so great!
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| Kate holding Nick's Fish! |
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| Great day together enjoying the outdoors! |
This week Nick finished up his last 2 doses of the Erwinia shots for this round, so we were in clinic on Monday and Wednesday. He also had an X-ray of his ankle to make sure it wasn't broken or fractured. We are grateful it is just a sprain! He only has one more round of Erwinia, which is 6 days of shots left!! Yay!! We are so excited for that. He had a fever on Monday morning but not one we have caught since. We pray the fevers stay away and the fungal samples grow something.
Nick is starting to have more good days. He is still tired and doesn't get up and around great, but his spirits have been better. I think he can finally see the light at the end of the tunnel. School is almost over too, which will be good. One less thing for him to worry about.
Thanks to everyone again for the meals, treats, sweet cards, texts, etc. We are grateful for every gesture of kindness, compassion, and charity. You have helped ease our burden. Loves to you all!
