For two year's I have been trying to complete a blog post. Again, we are so back in the routine of normal and how soon you can forget what life was like 5 years ago. 5 years ago we had a week full of scheduled games, meetings, appointments, and guess what-we missed every single one of them. We didn't reschedule, we didn't even call to say we weren't going to be there. Those so called "important" things fell away. So for now, I am remembering exactly where we were 5 years ago and bringing myself back to that moment. Because this was a DEEP valley for us. Oddly, I am SO thankful for that valley. In this time we were no longer just going through the motions. The Lord carried us ALL THE WAY.
I remember back to that first day. The first day we found out it was cancer exactly 5 years ago. I remember my jaw hurt, I couldn't unclench it. I had conversations with people I completely checked out of. A doctor came to talk to me and I told her it was nice to meet her, she reminded me that we had just had a lenghty conversation a few minutes earlier. One of the weirdest feelings in the world-to blank out like that. Cancer was something I associated with pain, with death, with uncertainty. And my 10 year old child had all of these things inside of his unknowing body. When Jordon heard he had cancer he asked a few questions then went back to his video game. At 10 years old he hadn't experienced the world of cancer. He didn't know anyone that died from cancer. He didn't know the test, sickness, pain, and difficulties people with cancer went through. He had live a life of only 10 years. All he knew was exactly what he knew at that moment, all that he has seen or learned in his short 10 years. As a parent you know you have to find the balance between hope, sanity, and empathy. There is no doubt in my mind we had the best team of doctors and nurses to help us through all of this. BUT, I am even more certain that if I did not COMPLETELY rely of God, I could have easily lost hope and sanity.
At the fragile age of 10 years old Jordon experienced all the things cancer can bring. The pain-he handled most of it well but found joy in the little things like getting to play video games till 4 am. The uncertainty-at one point the cancer didn't appear to respond to treatment so they lined Jordon up for a bone marrow transplant. After his last biopsy they determined that the remaining tumor was necrotic tissue and no transplant needed! Truly a miracle. The grief and sorrow of watching friends pass-we were walking the hall one day when we ran into Jordon's friends' mother. She told us that Robbie's treatment was no longer working. Jordon was devestated. He had a lot of questions and soon knew that sometimes in the world of cancer there was death. It gave me the opportunity to explain that this life is temporary for all of us, and we just have to know that the Lord loves him more than anyone on Earth possibly could, and that He has a perfect plan. Jordon lost many many friends after that. For a 10 year old, I think this was the hardest part of the entire process, not the pain, illness or uncertainty for himself, but the loss of some very close friends that knew exactly what you were going through, and understood better than anyone your fears, your pain, and frustrations. You live with these families, so you become family. We try and keep up with most of these families, but a few we have lost track of over the years.
Fast forward 5 years. And I mean FAST forward. I remember thinking how long the next five years would take, although I didn't want to waste them and them go by too fast. But I wanted that 5 year mark, I wanted each passing year to bring Jordon closer to being medically cured. We have traveled a bit, made lots of memories, and just tried to enjoy our life with three (now) teenagers.
Jordon still has regular appointments. He still has a late effects team and an immunologist that he sees regularly. Sometimes these doctors make referrals for him to see additional doctors, but for the most part Jordon remains healthy. As a result of one of chemotherapy he has been unable to develop any titers after he was reimmunized. The chemo completly wiped out his immune system. Some positives are that he no longer has allergies but he also has no "built" up immunity to things like the common cold, infulenza, etc. Therefore, he has been getting treatments, at home, once a month for IVIG. This stuff is worth its weight in gold! Its a form of human plasma that protects Jordon's body from certain infections and diseases. The hope is that his immune system will repair itself in time for college. He has a few other personal late effects from the damage done by a drug that also saved his life. We cried about it, but have to come to the realization that these late effects are not directly life threatening, and in the scheme of things, they are minor compared to other things kids go through. We are VERY blessed, blessed beyond measure. Jordon is 15 now and every bit a 15 year old boy. Happy 5 year survivorship Jordon!
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