In August we went on a family trip to Hawaii (the big Island)!! It was a much needed get away and good quality time together as family. My mom and dad went with us and get credit for getting us our condos. They were very roomy and our Lanai was amazing. Nick was able to not be accessed for the entire 11 days we were gone and enjoyed his time in the ocean as well as his longer, more relaxing showers. We spent some time at beaches, went to a seahorse farm, octopus farm and bee farm. We also enjoyed a beautiful botanical garden. Nick really pushed himself to do a lot there. He was having some pretty severe leg pain and refused to let it slow him down.
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| Nick and Kate with Henna Tattoos.. Nicks stands for Survivor! |
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| Love these kids! |
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| Luau Fun!! |
We got home from Hawaii the Sunday morning before school started. That was a little rough but worked out ok. Kate started 6th grade and Alex is a senior. Where does the time go. We had found out the week before we left for Hawaii that Granite School District doesn't offer and online program for 7th or 8th graders, meaning Nick could either do Home Hospital School again this year or we could find another option. We found Nick an online school and he got started about a week later than the other 2 kids. He is taking a full schedule and doing very well. We are very grateful for that.
September was another full and busy month as the kids got back into the school routine. Nick turned 14 on the 9th and picked out a puppy from a rescue. He is a lab/ cattle dog mix and Nick named him Bandit. It was a little crazy at first but he is a smart dog and making lots of progress. Super cute as well. We totally need a little more crazy in our life!!
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| Bandit! He has grown about 3x this big so far! |
Nick also had his Make-A-Wish wish declared granted in September. With the help of REAL Salt Lake we had the opportunity to take a tour of the REAL Salt Lake Stadium with Nick's soccer team. We got to go in the locker room, the room they hang out in and watch video of other teams etc, as well as some other behind the scenes parts of the building. We met Nick Rimando and Justin Glad, Nick got pictures with both as well. The following Saturday we were able to go to the game early and they read Nick his wish grant proclamation. His wish is to go to Hawaii (Oahu). We hope to go next spring or summer.
The first weekend of October we had another family wedding. It was great to see how healthy Nick is looking. It was a night and day difference compared to the wedding we attended last May. We had family staying with us and it was a fun weekend.
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| My Handsome Men! |
In October Nick was invited to speak at a wonderful company that has provided some amazing stockings for the Oncology children that are inpatient during Christmas. He was asked to speak about his cancer journey and he did an amazing job. He wrote his talk and gave it confidently and with a perfect amount of Nick charm/humor! He was glad to be able to help encourage this company to keep supporting this cause and feel like he was giving back to the sweet kids enduring this horrible disease.
Nick is continuing to look healthier and we are so grateful for that. His hair is growing in. He is filling out and not looking so thin. He has been able to focus on his school work and is doing very good in all his classes. It is really fantastic to see. His biggest struggle right now is his legs.
Due to the continued leg pain he has been having his doctors scheduled him for an MRI last week. They wanted to check for something called AVN- Avascular Necrosis. It is death of bone tissue due to lack of blood supply and is considered chronic. The MRI verified it is not AVN but there is definitely something there. It appears to be inflammation in the bones which could be caused by a bacterial Infection or something else. Our doctors think it could either be the Fungal Infection he already has, now presenting in the bone (or may have always been there) or another condition called CRMO- Chronic Recurrent Multifocal Osteomyelitis, an auto inflammatory disorder that mostly affects children. The consensus from the doctors is to biopsy the bone in either his knee or ankle showing the inflammation and test it. That is scheduled for Thursday. We are hopeful it will provide some answers and help treat it so Nick can have less pain in his legs.
All in all we are grateful to have Nick in Maintenance. We are enjoying having him be more talkative, funny and more like himself. He is fairly frustrated by the leg issues as he has always been an active kid. He really can't do a lot of the things he LOVES, and that is hard. We pray there will be some answers to his leg pain and hopefully some relief but if not we will continue to be grateful to have him where he is, doing well in those other areas. Eating, gaining weight, HAPPY!! Loves to all of you that keep Nick in your prayers, please keep praying his legs will start to do better.
