Many of you have likely seen my FB post announcing Friday night that Teagan's scan yesterday showed no evidence of disease and the scan also showed that the Avastin (immunotherapy drug) has been helping her radiation necrosis! This was the best news and Christmas gift we could have received Friday night. As I said on the post, I kept taking breaths of fresh air Friday night as I think I hadn't done so in the last two months living on the edge of such uncertainty of Teagan's life. We still will always live with uncertainty every three months while checking for evidence of disease and for the next two years watching for the potential spread of necrosis to return. The uncertainty these last two months before finding out the positive effects of Avastin though felt like uncertainty on top of uncertainty.
I realized this morning I have not posted since we first got the diagnosis of radiation necrosis. It has been a rough two months which might help explain why. The first line of defense against the radiation necrosis was a large amount of steroids. This helped reduce the swelling in her brain around the necrosis sites. Teagan gained almost 20 pounds in two weeks on her little body from steroids. This made it difficult for her to breathe, difficult for her to move, and pretty much hard all the way around for her poor little body. Another additional side effect of the steroids was that it did not allow her brain to sleep. For the first two weeks, I was sleeping on the floor with her in her bedroom as she was waking every other hour. When she would wake up her brain was wide awake so getting her to go back down was not an easy feat. We had also been working very hard to potty train her and this of course went by the wayside as the steroids made her extremely constipated. Finally after three weeks of no sleep, Jeff and I got smart enough (or we realized we were quite the opposite for taking so long) to realize we needed to change her bed back into a crib. Thankfully by this time, they had started to wean Teagan off the steroids so together the crib and the lessening of the steroids allowed us to slowly began to get some sleep with only a 11pm and 2am wake up. Slowly we moved to a 2am wakeup and then the Saturday after Thanksgiving she came off her steroids completely and within days she was sleeping through the night and also could take more than a 1 hour naps (like she used to).
During this time, Teagan was also receiving Avastin treatments every 2 weeks. Avastin is a chemotherapy drug with delivers immunotherapy. Our SCH team had said they recommended we put in a PICC line in her arm which would have been a temporary line (similar to the double hickman in her chest she had for chemo and radiation) for Avastin. Jeff and I were hoping to avoid this as it demands becoming a nurse again and flushing it twice a day as well as dressing changes and ER visits for any temperatures. Thankfully they were willing to allow us to try doing the regular IV. Teagan did amazing the first two times. She didn't cry and watched the nurse put in her IV both times. The third time they had to poke her six times before calling in anesthesia with an ultrasound to get the IV into her vein. The nurse told me she is a little more "fluffy" since the steroids stepped on board. Luckily the IV went in right away and as usual Teagan barely cried. Her pain threshold has become quite high through all this.
Friday afternoon, Teagan was put under for her full MRI which we do routinely to check for evidence of disease. They were able to place her IV at the same time while she was under so we didn't need to worry about her IV not going in. This MRI showed no evidence of disease (no cancer) and it also showed that the Avastin had improved the three areas of radiation necrosis! This was a huge relief as they had told us there is a 5% chance the necrosis could be evidence of disease but they did not think so based upon the location of necrosis. 5% though doesn't give me any piece of mind anymore as radiation necrosis is very rare and only happens to 3% of kids. I find that these small odds sometimes make me more nervous given all the rarities Teagan has managed to undergo. Thankfully the odds worked out in Teagan's favor from what they can see now and for this we are so thankful!
These last two months have been a hard time as Teagan turned into a completely different kid with no sleep, roid rages, and without much energy to move around given she was so exhausted and had little energy for anything other than eating. It was hard to see her have to go through this when I had hoped for so long she would be done with treatment. At the same time, we were so thankful we had a medical option to treat her with. In addition to this, we are always on alert watching her breathing to see if she skipped breaths or for any sputtering when swallowing. Both of these symptoms would show up if necrosis was to spread into her brain stem. Thankfully she has not experienced any of these thus far.
Teagan's words on a daily and weekly basis continue to take off. Her fine motor skills are slowly coming back as well though her fingers on her left hand tend to curl under more than before. Teagan had previously lost her ability to stand and sit from the necrosis and now can sit up right and can also walk in her walker. She is not nearly as stable as she was prior to the necrosis but we will get there. She is making so many improvements and we learned that the steroids they gave her actually ate up muscle mass so we are hopeful the longer she is off of them the more muscle she can regain which hopefully will only help her moving forward (literally).
Amidst all of the above, we have had so many positive and hopeful things help nourish our hope.
*The same week we got the diagnosis of necrosis, I learned that my colleagues from Issaquah School District donated enough leave to get me through the majority of the school year paid and with medical benefits so I can continue to be with Teagan to help her re-recover. I am still in awe of this and could not be more thankful for all the caring hearts in the Issaquah School District. It was so hopeful to receive this gift the same week as we learned of the necrosis and now were given an entirely new road map ahead of us with even more unknown turns and bumps than we had imagined. Thank you everyone for this more than generous gift to myself and my family. Words can't do justice for how thankful I am for this. Brings me to tears routinely....good tears!
* We also have had the best therapists from Children's Therapy Center (CTC) for Teagan (physical therapy, occupational therapy, and speech therapy). In January, Teagan will get new therapists at CTC as she has aged out of their birth to three program. I never knew how connected I would become to these therapists as I was a tearful hot mess as we had to say goodbye to them. They have provided so much support and are some of the most caring and helpful human beings.
*I was able to help other cancer parents over the holiday season through the non profit we created in Teagan's name. Visiting these parents going through this cancer journey helped me realize I am part of a new cancer family. This family is filled with amazing human beings who will do anything to help save their most precious babies. The hope, love, and connection I have seen through this and along this journey is something I will never forget. The human created barriers that often effect human connections such as socioeconomic status, race, religion, education, etc. are broken down through these cancer journeys. This experience has helped me to see and find what matters most in life and it has turned me into a more loving person. This is one of the things I am most thankful for through this journey.
I want to thank everyone again for all their support. I am always wishing that I could find a way to thank everyone for all their support but am overwhelmed by this thought given we have received so much love and support. My hope through Sweet Tea Cancer Connections is that I can give back to this world in a way that can spread my thankfulness and support by paying it forward through helping others.
Our family hopes you all have a happy and healthy holiday season! Thank you again for all your prayers, love, support, and caring hearts!