Lately, there has been so much light surrounding us, yet, darkness occasionally peeks its head in to remind me that we are still fighting…
Brooks has a limp when he walks. His right leg is tighter and not as strong as the left. He has never been steady but we thought he would grow out of it with age. We presumed it was related to the steroids, the Vincristine (one prominent chemo-therapy) and his abnormally large brain. 🙂 Our doctors have always been aware of his condition but addressing it had been on the back-burner since we had bigger fish to fry.
We have now reached a point where we are ready to tackle this gross-motor delay. We made a video of Brooks walking and running and sent it to our doctors asking them for physical therapy direction. Dr. Jacobs (the most incredible doctor ever), happened to have the video available when she was coincidentally in the elevator with the head of pediatric rehabilitation. Dr. Jacobs seized the moment to advocate for Brooks and asked the doctor for a quick review of our video. The rehabilitation doctor asked to see Brooks right away. An appointment was scheduled on our behalf. All we had to do was get a few x-rays of Brooks hips and show up!
To get the necessary x-rays we ventured into a part of the hospital that is far less familiar to Brooks, although all too familiar to me. Brooks was incredibly anxious here. I kept reassuring him that all we were going to do was get his picture taken. Walking down the hallway toward the imaging department, I nearly lost it. Almost a year ago exactly, this became our ground zero. At that time, what I thought would surely be a procedural MRI turned into our worst nightmare, our nuclear bomb, our war. I didn’t realize the impact that haunted hallway had my psyche. The memories hit me like a freight train! I almost couldn’t speak to explain that I merely needed a couple of x-rays. Luckily, I had to pull it together and keep my cool for Brooks, and I did. Had I been alone, I most certainly would have indulged my emotions while creating a puddle of tears on the floor.
For the appointment with physical medicine, Brooks’ bravado, that he has developed for the oncology floor, was now nonexistent. He was anxious in the new surroundings and I did my best to keep him entertained with an iPad. Erich rearranged his schedule to meet Brooks and I at the hospital. Even Daddy’s arrival had little distracting effect for Brooks.
The specialist came in to meet with us and give his assessment. Before his examination of Brooks, he presented us with medically sound hypotheses of what could cause the limping (everywhere from brain or spinal cord injury to nerve damage). After his examination, he felt more confident that Brooks’ condition is caused by nerve damage from the Vincristine and made worse by the steroids as they negatively impact core strength. (Just as we thought! Erich and I are inches away from earning our medical degrees!) 😉
What we didn’t know is that his nerve damage has just as good of a chance of worsening as it does of improving. (He will get monthly doses of Vincrisine as well as steroids for years to come.) As I sat there listening to the doctor talk about how the limp could possibly degenerate to a point of needing wheelchair assistance, I was a bit shocked. Somehow, instead of dread, I began to feel hope. Erich and I were both presented with the same information. The information was not hopeful. It was factual. We both came out of there saying, “That can’t be, it won’t be Brooks.” He is getting stronger. He is a fighter. We don’t know the future, but we (Erich and I) are optimistic about him recovering full strength and range of motion in his right leg. (This is odd thinking for us and most certainly a gift of reprieve from God.)
This encounter, though, reminded me that Brooks continues to fight an uphill battle. He has already been through so much but still has so much more treatment to endure… It is not lost on me that HE BEAT THE CANCER, but my frustration sometimes now rears its head as I curse the cure.
Most treatment side effects appear during or just after treatment and go away a short time later. Some problems may not go away or may not show up until months or years after treatment. These problems are called late effects. Not only could Brooks’ physical development be impaired, but also his mental faculty.
The use of intrathecal chemotherapy (lumbar puncture or “spinal tap chemo”) puts Brooks at risk of future learning disabilities. He has had too many lumbar punctures for me to count and will receive many more before he finishes his maintenance regimen.
Learning problems, often called cognitive impairments, usually show up within a few years of treatment. They may be seen as:
- Lower IQ scores, which can vary depending on how intense the treatment is
- Lower academic achievement test scores
- Problems with memory and attention
- Poor hand-eye coordination
- Slowed development over time
- Behavior problems
Currently, Brooks shows ABSOLUTELY NO SIGNS of ANY intellectual delays. If anything, he is a genius. There are so many conversations that I have with him where I am awestruck by his advancement.
For example, the other day, I was cleaning up the kitchen and I grabbed a can of soda water that was still half full. I looked a Brooks and said, “Is this your bubble water?”
Brooks responded, “Yes, that is my bubble water, Mommy. Thank you for knowing that.”
I wouldn’t have even been able to put together such a nicely worded response.
This is but one small illustration of his mental astuteness. I assure you, if you were to spend an afternoon with us, you would be equally impressed. He is such an amazing boy!
I think we all can agree that Brooks has been through ENOUGH!! Yet, there are so many unrealized issues that can plague Brooks for the rest of his life. I know I would poorly serve the world if I were to dwell on these possibilities. Even so, this week, I found myself drifting into fear that his mental capabilities will someday fail. I began to obsess that I would witness his bright light begin to fade.
My frustration gave way to sadness and anger then self pity… Here is the thinking involved in my occasional downward spirals, “How did he get cancer in the first place?” Then I agonize over the question, “Is there something that I did to cause it?” The doctors assure me that I did nothing to harm him. There is no genetic cause for his cancer, so is the environment to blame? If so, that’s me guys. I’m his environment. When I really want to torture myself, I run through the scenario of what would happen to my heart if the answer were, “Yes, you caused this.”
At some point along this path of darkness, one question emerges, “Where is God in all this?” This question is an old friend, and an old friend of mine likes to ask it often. It is her voice I hear when I finally ask it to myself.
God is certainly not present during my self-inflicted brain battle. I KNOW living in fear and worry is a wasted life! I just can’t seem to make that fact stick in my persistently twisted thinking.
Even if my worst fears do come through, we survive because God’s love not because I worried enough beforehand. After I ask where God is in my thinking, I can usually ask Him to step in and point me in the direction of a more friendly path for thought and action. While I wait for inspiration, I have a conditioned response that works 100% of the time in turning my thinking toward operating effectively: GRATITUDE LISTS!!!
We have so many reasons to sing praises!
I do not have to beg God for strength to get through. We made it through the darkest of darks. The clock does not tick forward mercilessly slowly, as I count thee hours of each day. I blinked, March is half-way over.
We are getting out of the house and living. I have had play dates with old friends and the hours fly by. Max quickly came out of his social-anxiety shell and Brooks is flowering nicely.
I no longer live in constant fear of hospital admissions. Max even asked me the other day, “When will you and Brooks spend the night in the hospital again?” Not because he wishes me home, rather the opposite! When Brooks and I are inpatients, he enjoys his sleep overs with Nana and Pops. His NIGHTLY trips to restaurants for burgers with Dad are unmatched.
Brooks is tolerating the maintenance portion of his treatment well. Even the 5 days of steroid at the beginning of every month is not too problematic.
BIGGEST BLESSING OF ALL… BROOKS IS GOING TO LIVE! YES, HE BEAT THE CANCER!
(Brooks has been considered in remission and cancer free since May 2016. This was just about 5 weeks after he began treatment. His treatment is so long in order to prevent relapse. Brooks’ cancer cells showed expressions that proved to be particularly resilient… especially in young boys)