I was sent an email this past Wednesday from the Undiagnosed Disease Network. One of the things they requested was that I write a one page narrative of Braeden's journey. Whoa!!! Just one page? They obviously have no idea how wordy I can be once I start typing. I felt a lot of pressure to make the narrative perfect.
(Braeden being accepted into the NIH could be the life changing miracle he needs.) I started with several pages of notes and an outline. Once, I felt I had my train of thought together, I began to type. I finished the paper last night, but I was well over the one page limit. I enlisted the help of my brilliant brother, Eric, who happens to have a Master's degree in English to help me edit my first draft. He did a fantastic job putting my semi colons where they were needed. He was also able to condense the paper to meet the requirements.
Below is the final narrative I sent to UDN.
How do I begin to summarize Braeden’s, my courageous and battle-worn son’s, medical journey in one page? A journey that has lasted for more than fourteen of his sixteen-year life. Anyone who knows me understands how difficult of a task this is for me to complete. I tend to get lost in my words as I advocate for my son who has been dealt a cruel hand since birth. I will try to keep this as succinct as possible, and please know that I appreciate every opportunity to tell about my personal Hero who has been treated at Duke for two different tumors.
I will start with his Craniopharyngioma brain tumor with which he was diagnosed when he was 21 months old. This tumor was quite a shock, and it changed everything for him. The tumor left him legally blind while also taking a wealth of medications daily to supplement not having a pituitary gland. Let’s not even mention the dreaded words, “vomit, fever, or stomach bug.” For most children, these words are not a big deal, but for him it usually means an ED visit and an overnight stay at the hospital. For the past 13 years, we thought he would be “safe’ from anything else medically going wrong for him. My son has a full plate already with all the things that come along with being a “Craniopharyngioma” kid. We were, no doubt, surprised when he was diagnosed with a Diffused Astrocytoma Grade Two spinal cord tumor. It began when Braeden started having left hand weakness. He couldn’t hold a pool stick; he wasn’t able to type on his laptop; and he couldn’t even tie his shoes. After three months of countless appointments and diagnostic testing, the team at Duke decided that the spinal cord tumor needed to be removed. He had a Laminectomy on November 28, 2018, and Dr. Fuchs was not able to remove all the tumor for fear of causing life-changing damage. Surgery and recovery went well. He was motivated to get better and to return to school as soon as possible. His life did, for the most part, return to his normal during 2019. His weakness in his left hand was really his main obstacle. The fact that something else could go wrong never crossed my mind as this kid had now had two different tumors and surgeries that would scare most of us and bring us to a halt. However, life once again slammed its brakes, and his normal day to day routines stopped. Braeden began experiencing weakness in his right hand in late 2019. Braeden knew; I knew; his father knew; his stepparents knew; his brothers knew that Braeden could not risk losing the use of his right hand like he had with his left. The loss of his right hand would devastate him as life is already difficult enough for him to navigate with his challenges. During January 2020, it was imperative to us and the doctors that we urgently treat Braeden as quickly as possible to slow down any further right hand atrophy and weakness. Any further weakness in that hand would be detrimental to his daily life. Braeden underwent 30 radiation treatments, Avastin infusions, and massive doses of dreaded steroids. After he finished his radiation, Avastin infusions, and the steroid regimen in early April, we continued to test his hand strength at home to ensure he was maintaining adequate numbers. For reference, in October 2019 his right-hand strength was 69 pounds; during his radiation, his strength averaged 23 pounds. By the beginning of May 2020, his strength was at 15 pounds. This caused us great alarm, and the decision was made to begin Avastin infusions and steroids once again. The toll this is taking on my son’s physical, mental, and emotional well-being is indescribable, yet though it all, he remains hopeful. We know he is fearful, but he maintains dialogue with us and asks us and the doctors thoughtful, focused questions as he seeks understanding in his journey. It breaks our hearts that he has had to do so his entire life. Alas, in mid-May we were informed by doctors at Duke that they had “exhausted all ideas and avenues” in trying to figure out what was causing the atrophy in Braeden’s extremities. I am writing in hopes that your facility and team of doctors will give us the much-needed answers we so desperately desire for our son. Braeden has weakness and numbness in all four of his extremities. His hands presently are causing the most issues. Unfortunately, Braeden is unable to do two of his favorite pastimes. He is unable to bowl in his bowling league, and he is unable to play his trumpet. For a young boy, who is already blinded by a tumor as an infant, not to be able to do the two things he has worked so hard to accomplish is devastating. I have only seen him cry once during all of this, and it was when he realized he couldn’t hold on to his bowling ball any longer. The tumor finally won, but only for a short while. Braeden decided within moments that if he couldn’t hold the ball with his fingers, he would give a two-handed bowling technique a try once he finally finishes with treatments.
Braeden being Braeden has always found the positive. He often jokes with his twin and his younger brother about his “normal” vs their “normal.” I know it must be difficult for him to see these differences. Braeden is the kind of child you hope you have when you become a parent. Braeden is funny. Braeden is smart. Braeden is who you want your student to be. Braeden is who you want your best friend to be. Braeden is who you want to be at your side. Oh, and Braeden is sarcastic at times. (He is a teenager, after all.) Most importantly, Braeden has fought harder and overcome more with grace than most of us. He has done it all without complaint. Honestly, he has every reason to complain, but he simply doesn’t. This kid, my firstborn, deserves a chance to get back to his “normal.”
I will leave you with what I call a “Braeden-ism.” He recently asked me that when a doctor or a person asked him what kind of tumor he had, should he say brain or spinal. I told him he should say both because he has had them both. He then smiled and replied, “I just wanted to be sure that was ok. I don’t want anyone to think I am an overachiever.”
Thank you for your consideration,
Marsha & Braeden
For more Braeden’isms visit my blog which follows his journey from the beginning.
www.braedenbrave.blogspot.com
This week's update
Braeden had Avastin number 7 this week, and he is scheduled for his flexion MRI on June 23rd. In speaking to Children's Hospital of Philadelphia this week, they are waiting on
pathology slides. Once they have these slides, we will be closer to an answer as to whether they will accept his case.
Till next time...
#BraedenBrave
#MrUnlucky
