Monday, June 19th Nick started Maintenance! The day consisted of one chemo in clinic - Vincristine, and then a Lumbar Puncture with intrathecal Methotrexate in his spinal fluid. Maintenance will consist of once monthly doctor visits, along with the IV chemo Vincristine and sometimes a Lumbar Puncture. It also consists of oral doses of a chemo called 6MP daily, oral Methotrexate weekly, and a five day pulse of a dose of steroids. This will be Nick's general treatment protocol for the next 2 and 1/2 years until Dec. 19,2019 - his end of treatment date.
Overall we have to say "YES! Maintenance is better!". It is so wonderful not going up to clinic multiple times a week, we miss the nurses in clinic that have become a part of our lives but we welcome having some normalcy returning. Nick is really enjoying not being nauseous nearly all the time and has been working hard to eat better and gain some strength back. The first few weeks of maintenance this was still a real struggle. His digestion was off and his legs were still having some pain due to the neuropathy.
We are working on trying to live - really spend more time together and doing memorable things. We went to the Utah Museum of Natural History and the Living Planet Aquarium. We had a nice trip to Heber over the 4th of July and spent some time fishing on a rented Pontoon Boat on Strawberry Reservoir.
A couple of Nick's friends have done some special things for him. His friend Caleb held a blood drive in Honor of Nick for his Eagle Scout project. Nick and I helped for a couple of hours and it was humbling to see all our neighbors and friends that came out in support of Nick and Caleb.
Nick's friend Mary planned a little party for Nick and it was fun to surprise him. Many of his friends he hasn't seen much came and Nick had a fantastic time- he was truly happy and himself. Thank you to Mary for planning it and thank you to all his dear friends that were able to make it. Love you all! Did my mama heart good to see him doing something that made him so happy!!
The second week of July started out a bit rocky with Alex's car needing repair and Kate breaking her pinkie at gymnastics. Bryan and I were heading out of town on Tuesday for a little R & R and I wasn't sure it was meant to be. Lucky our luck changed and we had a wonderful time for 3 days in Vegas with some wonderful friends!! We even go upgraded to a suite. It was amazing. Thanks Emily, Dennis, Michele and Pat for a fun and relaxing get away. So grateful for the fabulous company! I literally got home from Vegas hours before leaving with Kate for Phoenix. We went to Phoenix for a baby shower and some time with Bryan's side of the family. We had a wonderful time.
Bryan and the boys went to the REAL vs. Manchester United Game on Monday, July 17th and had a great time. Alex was in heaven as he literally LOVES Manchester United!! He got the coaches signature on his Man U jersey and it made his year!
Thursday, July 20th Nick had clinic with his monthly chemo and a Lumbar Puncture. We arrived home around 2 and he was complaining about having the chills. He had a low grade fever that quickly escalated to over 103 so after a quick call to clinic we headed back up to Primary's. In clinic they started him on antibiotics and some fluids (as he had fasted for his procedure and thus was low on fluids). They decided to admit him overnight for observation with the hope we could leave first thing in the morning. On Friday, July 21st he was discharged about 5 pm. They had to adjust his Lovenox level (blood thinning shots) and retest 4 hours later to verify they were in a therapeutic range. Before leaving, one of Nick's doctors- Dr. Ours- came in to let us know the fungal marker from the day before had come back and had escalated back up above the 500 mark. Frustrating to say the lease, they scheduled a CT scan for Tuesday the 25th.
I am relieved to say we found out from the scan that his fungus infection in his spleen is improving. The fungal marker is not always the most accurate way to measure it, so we are very relieved to hear that we are heading in the right direction.
All in all I have to say things are definitely improving. Nick is getting stronger, has gained some weight and his hair is growing in. He seems happier and more like himself, getting more comfortable and doing more. I am grateful he is seeming more like himself. He still misses stuff, mostly soccer. He has told me numerous times he wants to feel good enough to go out and kick the soccer ball around or run around the neighborhood with his friends. He will get there, but I keep reminding him it will take time. We are so grateful for the love and support of so many friends and family, so grateful that he is in remission and improving daily.
