Rollercoaster Ride

This journey has been a rollercoaster ride and I am not a fan of rollercoasters - never have been. The last few weeks have consisted of many ups and downs- as is to be expected. I've spent a lot of time contemplating all that I am suppose to be learning from this trial. I can't even fathom what Nick is suppose to be learning- he is 13! I have a broad range of areas I could use some growth/improvement in. Good thing I have 2 and 1/2 more years of this trial to work on them I guess. I am definitely learning patience, to be ok with having little to no control and working harder to work on staying positive. Before this trial I considered myself a fairly positive person- what I have learned with the help of others is that I am not. Bryan is the positive one. I also thought I was a pretty strong person but that is proving otherwise as well. Sorrow has crept in and seems a bit to eager to present itself now a days. My number one area I am working on is how to be strong, Nick needs me to be strong as do my other kids and there really is no allocated time for me not to be. Trials are an interesting thing, one like ours really throws your whole world into a tailspin. It really makes you reflect. The fact you are suppose to learn from your trials is a whole other tailspin, and a bit overwhelming to think we all need that much learning... I hope it will feel a bit less so when the trial is over. Lately it has just made me start to feel like I am failing at everything.

The week of March 13th ended up being a great week. We had family in town for the NCAA Tournament as well as a Bridal Shower. We enjoyed the company very much! It is nice for Nick to have company- its a great distraction! Plus the poor kiddo is so sick of Bryan and I. Many thanks to our family for the visit and I also want to thank the neighbors that have stopped by the last few weeks  as well. Thank you! It means more than you know. Nick was able to attend 2 of the NCAA sessions and see some great College Basketball. He went to the Thursday afternoon session with me and to the Saturday session with Bryan and Alex. We had awesome 16th row seats also. We also went to Top Golf that weekend with Bryan's sister and nephew who were visiting from Phoenix- Nick was even able to swing the clubs a few times! He had a great time and did a lot of walking and eating that week. It was great!

NCAA fun with Nick's cousin Dustin and his wife Susie

Arizona Cheerleaders and Mascot

Family Fun at Top Golf

Nick had the week of March 20th off. No clinic, no chemo! YAY! He loves his breaks because he is starting to feel so much better on them. It is always very hard to go back a week off though. We got out to see the Beauty and the Beast movie, to the Puppy Barn and to the Aquarium. It was a pretty good week off.

We seriously wanted this Border Collie!

Nick started his second half of this phase on Monday March 27th. This half of the phase consists of chemo called ARAC that is administered for 4 consecutive days for 2 weeks in a row with some additional chemo in clinic on Mondays. He then has two weeks of the Erwinia shots which are the shots in both legs 3 times a week for 2 weeks.  started the day at 8:00 am in clinic, doctors visit then downstairs to the Children's Procedure Center for a Lumbar Puncture ( chemo in his spine). He is never a fan of the anesthesia for the LP but he was sitting up and eating when we got called back to recovery about 30 minutes after he went back. We had never seen him look so good after an LP. Thought it was a sign it was going to be a good day. We went back up to clinic for his scheduled Chemo's- He got 3 different kinds that day and then got home about 1:30. This half of the phase consists of chemo called ARAC that is administered for 4 consecutive days for 2 weeks in a row with some additional chemo in clinic on Mondays. He then has two weeks of the Erwinia shots which are the shots in both legs 3 times a week for 2 weeks. He started feeling pretty crummy shortly after getting home and by early evening started a fever. After a quick call to the On Call Oncologist we took Nick up to the ER around 8 pm. This was Nick's 3 visit to the ER since September. They did a chest X-Ray, nose swab and CBC (complete blood count). After a few hours it was determined he had a cold virus called CoronaVirus. His blood counts were all good including his ANC. ANC stands for Absolute Neutrophil Count- it is a measure of neutrophil granulocytes present in the blood. Because his ANC was good they were able to send us home. We got home at 12:30 am. Huge thanks to my wonderful parents for picking Kate up from gymnastics and taking care of her for the evening. Nick had received tickets to the Jazz game that night from the Clinic Life Specialist and fortunately Alex and a couple of his friends were able to go enjoy a night out.

The rest of the week Nick felt pretty crummy between the Chemo and the cold virus. He was nauseous and tired through Friday and ate fairly poorly. The only real reprieve was the daily visit from Dylan our awesome Home Health Nurse. He came Tuesday, Wednesday and Thursday to give Nick his chemo and de-access his port for the weekend. Dylan is great about visiting with Nick and is always so compassionate and kind. Nick really enjoys seeing Dylan and trusts him. Dylan has been a blessing for Nick. It is nice to almost always have the same nurse come into your home, someone Nick is comfortable with and has gotten to know. I know Nick appreciates Dylan.

Fortunately, Nick felt a bit better over the weekend and got out to a movie. He is still having issues with his walking. He is experiencing a lot of pain in his left ankle and hip, we may need to start taking him to physical therapy to work on that. He is regaining some movement in his toes that he had been having issues with, so we are grateful for that. If Nick meets all his counts and stays on schedule he will be done with his intense chemo and start Maintenance on June 19th. His end date is set in stone no matter when he starts Maintenance and that is Dec. 19th, 2019.  Nick will be 16 years old. He will continue to go in for a mixture of chemo and Lumbar Punctures monthly until that date. It feels good to know that date and it bring a little sorrow with it as well. It feels like a long way away, but as people like to remind me 3 years is but a little in our lifetime. I'm sure when it over I will have a different perspective, when you are living it - it can feel like eternity.

Thank you again to the friends and family that have offered support. I had a couple neighbors/ward members bring us in a meal in the last few weeks. They were very helpful and appreciated. We ask you continue to pray for Nick to gain strength, to be able to keep eating and to have less pain- right now primarily in the right ankle and hip. Thank you all!