Hi Friends and Family,
I thought I would write an update as so many generous folks have been asking how Teagan is doing. I last updated in March 2019 and gratefully a lot has changed since then in the right direction. Thank you for everyone who continues to show their love and caring hearts. This journey is not for the faint of heart and we appreciate everyone who continues to show love. I must admit, I keep wondering when I should stop updating as life goes on for the rest of the world but as we get further and further out I realize that the complications from the cancer treatments have continued to create issues for Teagan. I hate this but this is the reality which is not unusual for most kids post cancer treatment I have learned. Some have more side effects than others but it is rare to find some who have none at some point through their lives. In fact the statistics show 90% of kids post cancer treatment have some sort of side effect from the cancer treatments they underwent. 80% of these kiddos have lifelong chronic health conditions caused by the treatments. These aren't uplifting statistics but the reality for kids who receive cancer treatments.
Last I updated Teagan had had an upper GI test which helped us discover her stomach is moving food very slowly through her GI system which may be contributing to the puking. The idea being her colon can only hold so much food before it will come up if it's not going out. Since this test we have increased her Erythomyosin med (an antibiotic she takes 3 x day which has the side effect of moving food through her system faster), added daily Miralax, and also added Senna (a natural laxative). We also have cut out all dairy. This combination seems to be helping her poop more regularly now to a point where she is only puking once every 2.5-3 weeks and for not as many days. We don't know the cause of this but likely a side effect of chemo is our guess. We will continue to try and work to improve this for Teagan.
In the last two months we have been visiting Seattle Children's around 1-3 times per week but now gratefully don't have anything scheduled until her next scan in July as well as with GI in July. This feels so great to not see so many doctor appointments on the schedule. We are really grateful for our Neuro Oncology Nurse Practitioners and Late Effects Nurse at Seattle Children's who helped us work through all possible ideas of what could be causing this. Without their help we would likely be waiting 6-8 months just to schedule these individual procedures at Children's. I never thought we would continue to need their help so much post treatment but I am learning this post treatment life is no joke. In fact, we have come to realization that her quality of life is dependent upon the coordination of medical care and advocacy we provide for her as her parents. Given this realization and the continued medical complexities we learn about caused from the treatments that saved her life, I recently decided to not go back to work next year. This was not an easy decision but I could not be more grateful to be exactly where I am with her and available to help. When faced with the unanswered question of the life of my child, it shifted my whole mentality and ideas about life. I am grateful for these last two months where I have been available at a moments notice for the puking episodes which continue but also able to continue her 6 therapies a week as well as schedule in all the doctor appointments as well. I could not be more grateful for the caring and kind people at Maywood Middle School and Issaquah School District who welcomed me this year as well as were incredibly supportive when I left. I'm not sure I could ever thank the kind educators in Issaquah SD enough for their help throughout this.
In an effort to simplify the medical update piece in terms of recent procedures I thought I would share the tests she has had within the last two months:
1.)She had an upper endoscopy under anesthesia which helped show no abnormalities which was reassuring. We are continuing to work with GI as the puking has not yet subsided but somehow has slowed down some. We are at every 2.5 weeks now with fewer number of days while puking every 1-2 hours.
2.) Teagan also completed an EEG where she had 29 sensors hooked up to her head and had to go into it 4 hours sleep deprived and then try and sleep while all hooked up. She did great with the wires but the taking a nap while sleep deprived didn't go over so well. Gratefully they got all the info they needed and again we found no concerning issues. The reason for the EEG was to rule out her having seizures which could have been possibly contributing to her puking episodes.
3.) We are still working on her eyes. We may need to do an eye surgery to straighten out her right eye if we don't see improvements but are still working with a Developmental Optometrist to see what next steps might be. Her eyes have improved their ability to move side to side greatly with daily eye exercises but her right eye still struggles to move outward. Currently both eyes work but only one eye at a time. She also has no depth perception or peripheral vision. This is damage from brain surgery to remove her tumor.
We are grateful for the results of the endoscopy and EEG. We are hopeful for her eyes but not sure what the future will hold though grateful she can see well out of both of them. I have learned when trying to summarize to folks I don't know about Teagan that I use the term "medically complex" or say she has "some unique health needs". It is unfortunately too much of a mouthful at times to share it all and honestly too much to handle for most people. At the same time, I am learning when to share and not to share and sometimes I fail miserably. I am slowly learning to find a balance as it is hard as a Mom who has been entrenched in it for 2.5 years and counting but I won't give up trying:)
Thankfully through this rollercoaster ride of life our family will continue to ride after our daughter was diagnosed with brain cancer, we continue to see beauty.
*Three weeks ago, Teagan took her first steps, as she learned to walk for the 3rd time. I somehow caught it on video and shared it on FB if you haven't seen it. Quite a miracle and this provides us so much hope for her walking independently again!
*We recently had a visit from all three of her birth to 3 year old therapists who used to come to our house weekly (physical therapy, occupational therapy, and speech therapy). This visit was quite magical as it helped remind me of all the progress she has made and the incredible comebacks she made post radiation necrosis. We continue to be so grateful for all the therapists, providers, and others we run into that we honestly would never have met if not for Teagan getting brain cancer that have provided so much support and help for Teagan along the way. We will never be able to adequately thank them all but we are so grateful!
*I have been asked to do a short speech tomorrow for the Jaquish Dukelow Memorial Guild, one of Seattle Children's Guilds that has raised 1.5 million the last 20 years for continuing research for pediatric cancer at Seattle Children's Hospital. I've never done this before but grateful for the opportunity to share Teagan's journey and hopefully help others see the need for further research for better treatments given the incredible side effects of these treatments.
*Our nonprofit, Sweet Tea Cancer Connections (STCC), just partnered with researchers at the University of Texas at Austin and have scheduled our first focus group June 7th at Seattle Children's to get guidance on our app that is being developed to connect other parents at different stages of illness. Our hope is we can learn more about how they currently connect with other parents, how they use technology for support, and your personal and family needs for social and resource support. STCC is also finishing up two projects with the University of Washington. One with the UW Foster School of Business who has helped us design our marketing plan for our app. The other with the UW Capstone project which is helping to develop our app. I cannot tell you how helpful having a project for me is in terms of giving me something concrete I can work towards giving back to our new community. It is not easy to transition to a caregiver role and to have so many unknowns on our plate in terms of Teagan's future life as well as dealing with the complexities that come with having a child with special needs. It is helpful for me though to be able to turn this pain into purpose through this project. With time, I am excited to see this continue to flourish. This is passion defined for me and I am so grateful for all the incredible people who have helped this come this far and continue to assist this moving forward. I will never be able to adequately thank you all but please know how grateful I am.
I feel like I could go on and on about the beauty that so closely coincides with suffering along this journey. I am so grateful for this as it is such a necessary piece of what keeps us being grateful for everyday even if some days are filled with a lot of pain and tears (for me at least). I am learning a lot about navigating post treatment life for Teagan as well as taking on new roles as a caretaker as well as a special needs Mom. I am not ungrateful for this as I get to do so but I also think calling out reality within this is important too. It is not for the faint of heart and we also did not get a choice. So we move forward and I learn to pursue how one can find a healthy balance while facing some big questions about life or death on a daily basis. We daily ponder what the future will look like for our kiddos with so many unknowns. I also then continue to inquire how one keeps healthy as a Mom in the midst. If there is one thing I have a choice about, it is choosing to provide the best quality of care coordination I can for Teagan and also try to be as healthy as I can through this diagnosis which has changed our life forever. I liken it to a car crash that happened but then you continue to get triggered or potentially hit or actually hit with a new side effect at times from random directions. With this naturally comes some fear. How could it not? Getting the triggers and car crashes to stop is out of our control. The goal then being trying to find peace and beauty in the midst.
Thank you all for all your support and love you are sending Teagan and our family. We are so grateful for this and the amazing beauty you have helped provide for us along this ride. Hope you have a great weekend and enjoy the beautiful summer weather!