I sit here in Palm Springs on vacation while Teagan is napping, Judd watching a show on the ipad, and Jeff out golfing. The sun is shining, and we have an amazing view of the mountains. We are sitting here enjoying as normal a life as we could ask for. Actually, it's better than normal as we are on vacation in a sunny place in February!
I realize I have not posted for almost two months as Teagan has been improving each week it seems. She unfortunately is not back to where she was prior to radiation necrosis but is still getting stronger and stronger. As a recap she finished her Avastin (Immunotherapy) treatment at Seattle Children's Hospital on December 22nd, 2017. The scans following this treatment showed improvements in the areas of her brain affected by necrosis which we are most grateful of. There is still so much to be learned about how this will affect her brain, but we remain hopeful. Teagan is now able to sit up again, can talk again, and can walk with the help of her walker again. Necrosis had previously taken these away and we were told she may not gain these back.
Following Teagan's last Avastin treatment, Jeff and I wondered even more than ever how this necrosis could further effect Teagan's ability to learn to walk. She has much more ataxia (shaking), her left hand is now much more difficult for her to use, she has foot drop, she had decreased muscle mass from the high dose of steroids, and her previously dominant eye has changed to the other eye. In the back of my mind, I remembered a parent I met through the app we are creating whose child died of medulloblastoma at St. Jude's hospital. This parent had told me if I ever need a second opinion to contact Dr. Gajjar.
With even more uncertainty now with the addition of radiation necrosis, I decided to email Dr. Gajjar and find out if there is anything more we can do to assist Teagan with walking assuming they might have something different there we could add in addition to what we are already doing to help Teagan learn to walk again. In my email, I mentioned the radiation necrosis Teagan was recently diagnosed with. Dr. Gajjar emailed back immediately and told us what everyone else has told us is that it's going to take lots of time and work to get Teagan back to walking. Again, no false promises were made telling us if she will ever be able to walk again. He also asked us if we were doing Hyperbaric Oxygen Therapy (HBOT) as well. I had never heard of this so I immediately emailed back to inquire more.
We learned that Hyperbaric Oxygen Therapy at St. Jude's is something that they treat all their radiation necrosis kids with as their first line of defense and then follow often with Avastin (the immunotherapy chemo drug Teagan got in Nov/Dec 2017). I passed this along to Jeff and he immediately began searching the internet to learn more via research studies on hyperbaric oxygen therapy for radiation necrosis. We talked with Dr. Geyer, our Oncologist, who spoke with Dr. Gajjar at St. Jude's. Dr. Geyer basically told us there are not any clinical studies on HBOT given the small number of kids who suffer from this. He let us know it would be up to us if we decided we wanted to have Teagan do this treatment.
In case you are not familiar with hyperbaric oxygen therapy, a simple google search in layman terms helps explain.
Hyperbaric oxygen therapy (HBOT) is a medical treatment which enhances the body's natural healing process by inhalation of 100% oxygen in a monoplace or multiplace chamber, where atmospheric pressure is increased and controlled. It is used for a wide variety of treatments.
Under normal circumstances, oxygen is transported throughout the body only by red blood cells. With HBOT, oxygen is dissolved into all of the body's fluids, the plasma, the central nervous system fluids, the lymph, and the bone and can be carried to areas where circulation is diminished or blocked. In this way, extra oxygen can reach all of the damaged tissues and the body can support its own healing process. The increased oxygen greatly enhances the ability of white blood cells to kill bacteria, reduces swelling and allows new blood vessels to grow more rapidly into the affected areas.
Jeff and I soon realized we now knew of a treatment, HBOT, that has the potential to further heal Teagan's radiation necrosis. We have no guarantees it will work and if it doesn't they will stop treatments right away. How though as a parent with this knowledge can you not pursue everything you know that could potentially heal your child's brain? Especially when the side effects are minimal as compared to the side effects she is currently experiencing from chemo and radiation.
Last Wednesday, we learned that Teagan has been approved by insurance to receive Hyperbaric Oxygen Therapy for her radiation necrosis. HBOT will require Teagan to be treated for two hours a day in the pressurized hyperbaric oxygen chamber five days a week for 6-8 weeks. I will not be able to go in with her for her treatment unfortunately. We have begun to explain this to the kids as Teagan is going to go visit a little rocket ship which will be helping to repair the damage the big rocket ship has caused Teagan's brain.
This last month, I have spent searching for hyperbaric oxygen multiplace chambers in the United states that treat children. Virginia Mason has a chamber here in Seattle but unfortunately, they don't treat children. Portland had one that was willing to try and treat Teagan but they were out of network. Finally, we were able to narrow it down to Long Beach, Denver, and Houston. Thankfully we stumbled upon a doctor, Dr. Thombs, in Denver who was overgenerous and willing to put through the approval to insurance while working with our case manager at Premera. With his help, he saved our family a trip to Denver just for the approval process.
We are now searching for a place for Teagan and I to stay in Denver for 6-8 weeks while she is in treatment. Thankfully we have the option of finding a place given all the generous donations our community has offered us when Teagan was first diagnosed. I hope to try and make the best of our time there. Honestly the hardest part is going to be leaving our son Judd. Judd is just now getting to the point where he is no longer afraid of going to the bathroom at school in fear of his class leaving him and now I am going to leave him. We have not told him the details of leaving just yet as we want to wait until we have an actual date. Before we leave we need to get tubes put in Teagan's ear to deal with the pressure in the chamber and are hoping we can find out next week when we can get this done and then find a place following in Denver.
I hate that I have to leave Judd but we are hopeful we can find a way for him to come visit and we will do our best to try and make it as least painful as possible. If there is one thing, cancer has done is it has made me much more mentally tough. If I can do 8 months of chemo and radiation, I can do 8 weeks of HBOT. This doesn't mean I am not ridden with fear at times and brought to tears on a very consistent basis. I believe though that we can do this and we will make the best of it because we actually have an opportunity to provide our daughter with a healing treatment! Not every parent with a child who has had cancer gets this opportunity for a healing treatment and for this I am grateful!
One day at a time and one moment at a time. This is what I used to tell myself in treatment and often find myself telling myself post treatment. We have yet to have a time longer than three months which we have not been challenged by some unknown side effect with Teagan. This amount of stress over this long of a period of time is not easy on the body or the mind. It takes a toll but I will always have hope. In fact, I am most hopeful that I can use this experience to lead me closer to post traumatic growth or benefit finding. Wikipedia describes it as, " positive psychological change experienced as a result of adversity and other challenges in order to rise to a higher level of functioning. These circumstances represent significant challenges to the adaptive resources of the individual, and pose significant challenges to their way of understanding the world and their place in it. Posttraumatic growth is not about returning to the same life as it was previously experienced before a period of traumatic suffering, but rather it is about undergoing significant 'life-changing' psychological shifts in thinking and relating to the world, that contribute to a personal process of change, that is deeply meaningful”.
I continue to strive towards post traumatic growth. It is not clean, in fact it is very messy and looks and feels at times like anything but pleasant. I still believe, hope, and am determined to do my best to make this journey with a child who has had cancer one that helps our family love more deeply, enjoy life more, appreciate each other more, be more empathetic to others, and be more present in this short time together we have here on earth.
P.S. If anyone knows anyone in Denver that knows of a place to rent in a safe neighborhood, feel free to let me know. We are searching VRBO and AirB&B currently. We are hoping we will be able to go in mid March after Teagan's next big scan March 8th at Seattle Children's Hospital. Thank you in advance!