Teagan had been making great gains since finishing radiation at the end of July and we were very happy and pleased with her progress. The last two weeks, however, we had mounting concerns as her balance was progressively getting worse. She had been able to sit upright and was learning to walk again on her special walker. But, now was falling over sitting and could not walk in her walker by herself anymore. I had been emailing our Neuro Oncology Nurse Practitioner who is amazing with my concerns. So, today we went into Seattle Children’s Hospital with concerns we had with Teagan’s balance and her eyes turning in. We saw Neurosurgery in outpatient that morning to check her shunt to make sure it was working and not causing the balance issues. They took a CT scan and it showed her ventricles in her head were the same size, which did not indicate a shunt problem. The Neuro Nurse Practitioner confirmed her ventricles didn’t show any change, but given that Teagan has a recalled shunt, she still urged us to replace the shunt. We asked to do a shunt o’ gram this week to try and gather more info on whether the shunt was or was not working and then left the hospital around 12pm to take Teagan home.
While driving home we got a call from oncology. They asked us to come back through ER as they saw some concerning new spots on the CT scan. They wanted us to go into ER where we would need to wait 6 hours with Teagan without eating to do a full MRI scan at 6pm. Full MRI scans require Teagan go under anesthesia, which is why she could not eat. At around 10pm we got results of MRI back which showed some new spots of “enhancement” which they thought were radiation necrosis, but could not rule out it being evidence of disease. We were told we need to wait until Wednesday for the Brain Tumor Team to review her scan as they would make this decision and tell us next steps. We arrived home Friday night from the ER at 11pm with a large amount of steroids to give Teagan until Wednesday when we would see the doctors again.
11/4/2017-The next morning, Saturday, we had made plans with the Roc Solid Foundation for Teagan, Judd, and their friends to take a limo ride to breakfast and visit the Kids Museum. During the time we were away from home Roc Solid, Weinersnitzel, and No Name Bikers’ volunteers, built Teagan and Judd a new play set in our yard! It was a prefect distraction from reality for the day and we were so grateful for this generous gift from the foundation. It was a perfect day; however the steroids were taking their toll on Teagan at times and leaving her in fits of “roid rage”.
11/8/2017-Today we learned the bad news from the Brain Tumor Team that they believe Teagan is suffering from radiation necrosis. This is all relative good news, in a sense, since they are 95% sure it is not new evidence of disease. This was our biggest concern. Unfortunately, radiation necrosis is not exactly good news either. So, what is radiation necrosis? I remember this was something they told us was very rare in the radiation intake. I honestly hate hearing something is "very rare" anymore, as this doesn't hold much meaning to us anymore. A Google search can help one better understand. Cancer Compass tell us the following......
“When brain tumors are treated with radiation therapy, there is always a risk of radiation-induced necrosis of healthy brain tissue. Insidious and potentially fatal, radiation necrosis of the brain may develop months or even years after irradiation. This poorly understood side effect can occur even when the most stringent measures are taken to avoid exposing healthy tissue to harmful levels of radiation. In most cases, radiation necrosis of the brain occurs at random, without known genetic or other predisposing risk factors. The only treatment options typically available for radiation necrosis of the brain are surgery to remove dead tissue and use of the steroid dexamethasone to provide limited symptom control. But clinicians have not found a way to stop the progression of necrosis, despite having tested a range of therapies including anticoagulants, hyperbaric oxygen, and high-dose anti-inflammatory regimens.
However, recent studies at M. D. Anderson have shown that the monoclonal antibody bevacizumab (Avastin) may be able to stop radiation necrosis of the brain and allow some of the damage to be reversed. Victor A. Levin, M.D., a professor in the Department of Neuro-Oncology and the senior researcher on the studies, said the findings suggest that radiation necrosis of the brain can be successfully managed—and perhaps even prevented—with bevacizumab or similar drugs.”
Our Team told us that radiation necrosis could get worse, but hopefully it will not for Teagan. We, and they, don’t know how this will play out so we will just have to wait and see. The most dangerous thing about her radiation necrosis is that is located immediately next to her brain stem. They have asked us to watch her very closely for her skipping breaths and /or trying to catch her breath or difficulty swallowing. These are symptoms related to the brain stem and if she was experiencing these, we would need to bring her to ER immediately as they could be life threating.
Tomorrow afternoon we will start bevacizumab (also known as Avastin) which is the immunotherapy drug mentioned above. She will receive this drug every two weeks for a total of 4 times through an outpatient iv procedure at Seattle Children's. The first time it will be 90 minutes, the second session 60 minutes, and the last two sessions 30 minutes long. She could get better or worse as we go, given no one knows what or how her necrosis will play out. We are hoping this immunotherapy will stop the necrosis and allow the damage to be reversed. Our Radiologist said we can hope that over the next 9 months to a year, we see her regain her progress back to where she was prior to this.
How do we process more bad news?
This will take some time to digest, the same way it took time for us to accept the reality of hearing our daughter had brain cancer. Before, our biggest concern was her cancer coming back, knowing that cancer is a disease that can be fatal. Now we have a side effect of her proton radiation that could be life threatening. It is late and the last 5 days of waiting have been mentally and physically exhausting. It is easy thus to begin down the “why us”, “why Teagan”, train of thought again. This thought of why honestly is not worth entertaining. It doesn't change anything, and it doesn't add to the quality of our life right now. I was once told at the beginning of this journey that the only way through this is going through it. There are no short cuts, no tricks, you just have to face reality and be gentle with yourself along the way. So simple and true, yet the biggest challenge in my life I have ever faced.
I keep coming back at the end of the day to hope. I always would search out quotes during treatment, during the endless hours in a hospital room looking for inspiration. One quote that comes to mind is, "If you keep hope alive, it will keep you alive". We plan to be hopeful and surround Teagan with our hopeful energy while continuing down the path to recovery, right by her side the entire way. We have no control over what the future brings for her, but we will never give up hope and we will be by her side, always. Another one of my favorite hope quotes is by Liz Chase— “Hope is not pretending that troubles don’t exist. It is the trust that they will not last forever, that hurts will be healed, and difficulties overcome. It is faith that a source of strength and renewal lies within to lead us through the dark into the sunshine.” ☀️❤️