Nick started his third phase of chemo Monday, December 19th. He'd had a really good weekend from the 16th till the 18th. He regained some strength and got out of the house for a movie, "Star Wars: Rouge One". It was the best Bryan and I had seen him physically since early October.
His appointment Monday consisted of a clinic visit to re access his port and a blood draw, he then met with his doctors. Afterwards we went downstairs to the Children's Procedure Center for his lumbar puncture and bone marrow aspirate. They called Bryan and I back about 35 minutes after he went in and Nick was already alert and looked the best he ever has after anesthesia. Again, a marked improvement over the several previous procedures with anesthesia!
Once Nick was done in recovery we were moved up to the cancer unit for his inpatient chemo. His treatments this phase (which run approx. 60 days) consist of an IV chemo that runs 24 hours. At the end of those 24 hours they start checking his blood to get it cleared from his system. The average patient clears in about 48 - 72 hours. Once the number is <.1 he is clear to go home! He repeats this process every other week for the 60 day duration.
Nick's chemo got started around 6 and finished up the following night just before 7. From there it became a waiting game. His number dropped ok the first check but then progressively got slower. In a 24 hour window he dropped from .36 to .31. It was frustrating to say the least. We learned this visit to not go in with any expectations, it was our down fall. We believed there was no way we would be there past Friday or Saturday ( Christmas Eve) at the latest. It took Nick 8 days to clear the chemo and 11 to get released. The poor kid suffered more than his share for sure. He got horrible mucositis which has been described to us as cankers times 100. He had sores in his mouth and down his throat and was in a lot of pain. One plus of being at the hospital is they have more options for the pain, he had IV morphine for a few days and had all his meds crushed and pushed through his feeding tube. He also threw up his feeding tube and had to have it reinserted. That was painful due to the throat sores. He finally got to come home Friday December 30th.
We celebrated our Christmas on Dec. 30th and then New Years Eve the following night. It was great to be home and all of us to be together!
It was a rough almost 2 weeks for sure. In those 2 weeks we got 2 pretty great pick me ups! 1. Nick's blood clot in his right arm is gone! YAY! No more shots twice a day in his belly. 2. The HUGE news is that his Bone Marrow Aspirate came back clean and clear. He is officially in REMISSION!
His treatment protocol is the same. He will still complete the full 3 years of treatments but it was a big relief to know its working. Nick had been so worried and it was a huge weight lifted to hear he was in remission. We all shed some serious tears of relief that day!
All in all we are thankful for HOPE! We keep saying all we have right now is hope! Hope he gets better, hope he can tolerate the treatments, hope we don't all go crazy, hope that in the end it all works out and HOPE is what carries us through the good and the bad!!
Good choice of words "Hope"
ReplyDeleteYou all are so awesome. So proud of your ability to maintain hope. I do think it is the key to success.
The Infinite Power of Hope - President Dieter F. Uchtdorf
Amy. You are beautiful and strong. I love your cute laugh, your real opinions and feelings, the organized way you look at life. I have always admired you and learned a lot from you. Keep believing in yourself because the Amy that was is also transforming into a somehow more amazing person. It seems impossible to me, but I can feel it in your words. Thank you for being so amazing for Nick. I am sure Heavenly Father wants to thank you too. He couldn't have made a more prefect Mom for Nick, Kate and Alex too. Thank you for sharing this. Give Nick love from the Dallimore's.
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