Learning Perspective!!

The last three months were good ones, we have been busy. Nick continues his daily oral chemo as well as monthly clinic visits for chemo with some including LP's (Lumbar Punctures). He is visited by his home health nurse Dylan every week to get his port re-accessed. After about a month break from physical therapy, while we tried to figure out the leg pain, he has restarted that this year. He continues to go to foot zoning about every 10-14 days and we have been going to the orthodontist more often in hopes of getting those braces off sooner than later. We also squeezed in a fabulous Christmas getaway to Arizona and had a wonderful Christmas with Bryan's family there.

Nick had a bone biopsy of his ankle (an area with extreme inflammation) in November that unfortunately yielded no real answers. The inflammation is not due to a bacterial infection or the fungal infection. We visited both a orthopedic specialist and pediatric rheumatologist regarding the leg pain. The orthopedic specialist felt his muscles were extremely tight in his legs and that stretching several (5) times a day would be helpful. He was slightly concerned with the inflammation in the MRI and said he really hadn't seen anything like it. A couple of days later we went to the pediatric rheumatologist who is also a CRMO expert.  She was very thorough but also a filled us all with a bit of despair. She spent over 2 hours with us, examining Nick and getting his full history from us. She was concerned he may have an autoimmune disease or an issue with his muscles as they were showing on the MRI much lighter in color than they should have. She felt possible edema in his muscles was of concern. She also admitted that due to him having cancer she would be hesitant to actually diagnose him with any of the diseases she works with, but she was eager to help us find some relief for the pain. She had our home health nurse pull about 7 vials of blood for labs! We were happy when we heard back from her that nothing was out of the ordinary minus 2 test results that were a little elevated due to his chemo (which is to be expected). Even though it was good news, at the same time it was a bit disappointment due to no real answers, yet again. When she called me she did discuss the option of trying an IV medication known to help in some CRMO cases. It is called biphosphonates and it is an IV medication they administer once a month. The rheumatologist said if he tried it she would like him to try it for 4 months and then have another MRI. Nick, Bryan and I decided it was worth trying and we would judge the results based on how Nick feels. He had his first treatment of this medication the end of January and I am excited to report it appears to have helped. Nick's legs have been feeling a lot better, no pain, only aches from stretching and physical therapy. He is walking a lot better and with a little quicker pace! YAY! This is a big step towards him being more active and able to do more of the things he wants to do. I am super excited for him and pray that we will continue to see improvement as we continue the treatments.

The fungal infection continues to be an interesting complication. His Fungitel (blood Test) level is now <31 which is considered negative for fungus. The infectious disease doctors prefer to keep pediatric cancer patients on fungal medication until the end of treatment as their immune system is being suppressed. For Nick this is a little more complicated as he only shows progress when using the IV fungal medication which complicates the matter as he has to have his port accessed all the time for the medication. A part of me is relieved that the doctors have finally admitted to us that he may have to continue on that medication till the end of treatment rather than give us false hope that is may only be a few more months every time we discuss it. Yet another part of me is frustrated with the thought of him having to deal with that for another 2 years. It is trivial in the big picture but it is something I have a hard time with.

In December Nick also opted to try his lumbar puncture without anesthesia. Anesthesia has not been Nick's friend! He doesn't like fasting prior to the procedure nor does he like how crappy he feels upon waking up and through the following day. A lumbar puncture consists of a poke into his spinal cord to pull out a little sample of spinal fluid and then a injection of a chemo called Methotrexate into the spinal fluid. Nick had the procedure done on the 4th floor in the Cancer Inpatient unit where they have a procedure room. The doctor comes in and they have already numbed the site with the same numbing cream they use when they access his port. They then do a shot to numb him more and then the procedure literally takes about 5 minutes. Bryan watched the whole thing, I am not good with those type of things so I opted for a seat where I could not view the procedure. Nick said it was a little uncomfortable but way better than doing anesthesia, he is opting to do the rest of his LP's un-sedated. He loved how much better he felt afterwards and the fact we didn't have to go to the Children's Procedure Center. He is one brave young man and continues to amaze me.

Nick has a new love. Soccer was his love before his diagnoses. This kid played some amazing and beautiful soccer. He was truly a talented soccer player, smart, could picture the entire field and make the most amazing plays. I may be a bit biased but he was an amazing player. Nick's new love is JAZZ Basketball! He loves to watch the Jazz, follow them on Instagram, and thinks Donovan Mitchell is awesome. It is awesome, he knows more about the Jazz than his brother and dad! That is saying a lot! I am so glad he has a passion for something again, he needs that in his life. It has been really good for him.

I was extremely concerned about school this year as Nick really did almost no school last year. He has been keeping pace and I am so proud of how responsible he is about doing his work.  He does online school and takes full responsibility for it himself. I never have to ask him to do it or anything, and he is such a perfectionist he expects the best from himself. Only A's make him happy, preferably 100% in every class. Just today I was reminding him that he just spent last year fighting cancer and to not be so hard on himself. I am really proud of him for exceeding my expectations for the year and pushing himself even on days when he is not feeling his best. This kid is a fighter and hard worker.

Many things have happened over the last few months that have given us some "perspective" regarding our trial and the trials of friends and loved ones. A cancer family lost their little boy to cancer a few days before Christmas, a good friend injured his spinal cord on a family vacation and is now a quadriplegic. Many other neighbors/friends having some big trials and losses as well. "Perspective" is something hard to come by sometimes in the midst of a trial, everyones trials are difficult and hard in their own respect. Last year my perspective was so focused on Nick, and his emotional state usually rubbed off on me. Some of these people have amazed me with their strength and positivity, I have a lot of room for growth there still. Faith that it will all work out is something I need to tell myself everyday. I also have a strong urge to find a way to help other childhood cancer families. I have been contemplating since the new year where I am suppose to be making a difference, I feel strongly there is something I have to give to this cause. I have another 2 years to take care of Nick but I believe as he gets stronger I will be presented with an opportunity to help others, to ease the burden of this journey for some other families out there. I pray I will be able to make a difference in some small way.

I realize how blessed we are to have Nick here with us. I also realize the time I have worried about his quality of life, what he may never be able to do again, if he will get to go back to school before he is done with treatment at the end of 2019- all of these things don't really matter, he is here, with our family, where he belongs and we will take it a day at a time. Life is good, we are cherishing our time together!