Hope you all are having a great summer! Such beautiful weather we continue to have! Thought I would write an update as it’s been about a month since I last wrote.
Today is Teagan's last day of intensive therapy! For the last 3.5 weeks we have been driving up to Lynnwood (about an hour drive north) for Teagan to receive physical therapy 5 time per week, occupational therapy 4 times per week, and speech therapy once a week. It has been a long haul as we leave the house at 6:45am everyday and return at 11am. This has made potty training nearly impossible but thankfully later in life no one asks you what age you were potty trained:) Instead she has had a great opportunity to begin to build strength and is continuing to make slow and steady progress. I am so incredibly happy that our original request to do intensive inpatient therapy was not approved by insurance as this was a much better option and a better fit for our family.
I have also learned through many conversations with other Moms in the waiting room that this seems to be the norm in the summer or over holiday breaks to do intensive daily therapy to help provide a boost and challenge to encourage growth/healing/strength for kids like Teagan with PT, OT, or speech challenges. Rehab Without Walls has been a great place that offers some alternative approaches but most importantly Teagan has made friends and everyday walks right in and does 2 hours straight of therapy without a complaint. Pretty darn impressive I must say for a 3 year old to do this much therapy on a daily basis for almost 4 weeks and not complain.
One surprise we learned through this new therapy place was Teagan can go into therapy all by herself. I am used to always being with her but we noticed that she tends to work a little harder if Mom is not there. Big surprise:) This has been good for me as I slowly pull away but this also allowed me to meet many amazing parents in the waiting room while waiting for her. One parent in particular I met whose son had the same type of cancer as Teagan's at 18 months old (4 months younger than Teagan). In meeting her, I learned that her son learned to walk after 7 years. I cannot tell you how much hope this provides me to hear this. You better believe I got this Mom's contact info as I hold on to these types of encounters pretty close for the hope it provides us especially along this very slow and steady journey towards what I hope and believe includes Teagan learning to walk. I also met another child's Mom whose son had brain cancer and you would not have known it from looking at how well he was doing. I must say I have never seen so many kids who were not able to walk as I have seen at Rehab without Walls. It is not a good thing to see this but for some reason for me to see this and know there are so many others out there that understand this jounrey and many whose children don't have the hope of relearning to walk (many with cerebral palsy) helped me to continue to keep things in perspective. These moments of perspective are so helpful for me.
In addition to daily therapy this last month, we have been enjoying summer. I sit in awe watching Judd and Teagan play around the house. I watch as Judd adjusts activities to include his sister and am in awe of how much he enjoys helping her. Not to say they don't argue or fuss but it brings so much joy to see them play this summer at home. We don't need to go anywhere special just being together is simply enough. Grateful beyond words to be able to sleep in our bed every night this summer and do so many social things we weren't able to do last summer while Teagan was in radiation.
As the summer comes to an end, my planning brain has been working on trying to plan my transition back to work. One might think my daily lessons in learning I have no control over life might clue me in on this approach but apparently not always. I had originally planned, 3 months ago, for Teagan to have her next big scan on August 3rd before I return to work. I had everything planned out and on the morning of August 3rd, we get up and get Teagan ready to go to the hospital for her hour long sedated MRI and she pukes right before we left. This is a huge fear alarm for any brain tumor parent who knows puking is one of the more common symptoms of recurrence of brain tumor. This puking is what happened when we first discovered her tumor, this is what happened through all of chemo, and this had not happened since the beginning of radiation (the puking). I held her in my arms over the sink as I couldn't make it to the toilet in time feeling her body as she puked and the memories and emotions came flooding back.
It's almost as my body has been through this fear cycle so many times that I can sometimes step outside and watch the patterns my body goes through with fear. Jeff and I look at eachother and without saying anything can see the wheels spinning in our heads. We begin to try and problem solve about what we do next. Neither of us can think clearly but we head in to the hospital with the hopes that maybe it was a one time thing. As we continue to get closer to the hospital she pukes again twice. We get into the hospital room after a little time of not puking and she continues to puke 5 or 6 more times. At this time she is puking in front of the anesthesiologist which is a no go for the scan for risk of causing aspiration if she was to puke while under anesthesia. Thankfully for the timing they were able to do a haste MRI (quick non sedated MRI) to check her ventricles in her head to make sure they had not changed size. They also did a shunt series xray to make sure her shunt equipment in her head and belly was in place. Thankfully both of these checked out good and we left thinking maybe she got a quick virus or possibly the new eye exercises we got from her developmental optometrist made her dizzy that morning. One is always guessing when it comes to the brain. Unfortunately we left the hospital unable to get a new MRI until the 30th of August (ugh).
Preparing for these routine scans to check for recurrence of tumor is an exhausting process in and of itself. Typically prior to our 3 months scans for Teagan, we have a routine where we have a pre scan dinner at our favorite Mexican restaurant the night before. This place provides good mexican food and very LARGE margaritas for Mom. The week or two leading up to the scan is filled with scanxiety where you brain goes back and forth with what if her cancer came back, etc., etc. By the end of Friday night, after all the prep going into it and then to have it cancelled we were exhausted. This type of stress literally takes everything out of you. Thankfully in peer exhaustion I was able to fall sleep early and Teagn did not puke again that day.
Fast forward one week to the day, this last Friday, Teagan mentioned on the drive to therapy that she felt nauseous. Of course I am on red alert watching her like a hawk and I began to worry. She still had energy though and was still acting otherwise normal. Typcial Teagan powerd through an entire hour of physcial therapy and an hour of speech. When she came out from speech, I noticed she seemed off. I have been around her puking so much that I feel like I have decent puke radar with her. Luckily I got her to the bathroom just in time before she puked. She said she felt better afterwards and we drove home with her sleeping. I spent that day on the phone with neurosurgery trying to problem solve the possibily of her recalled shunt not working as well as neuro oncology trying to figure out if this could be a sign of recurrence of tumor or connected to the return of radiation necrosis. We were told there was no way to move up her scan and if she pukes one more time, we will need to go into ER and begin delving deeper into what could be going on.
So here we are today on Wednesday and she is appearing ok. I am really hoping we don't have another Friday puke day again this week but her energy and appetite all seem to be back to normal since last Friday. When we are not sure what is coming next, I notice myself living fully present in the hour or the day. Thinking beyond this is not helpful. We have eased off some of the eye excercises and are hopeful being done with the hour long drives into therapy in the mornings will rule out car sickness as well. We now wait until her next scan on the 30th of August when we hope for good results and no additional symptoms beforehand. If this isn't yet another lesson in having no control over what awaits, I'm not sure what is:)
Thankfully though Teagan has adjusted to taking her daily human growth hormone shots nightly with true Teagan toughness. Judd has been incredibly helpful and lays on his tummy next to her to comfort her when we give her daily buttox shots. We also met with endocrinology and learned that she will be followed for life by endocrinology. Through this conversation we learned about some of the side effects of human growth hormones which we hope she does not get. Some include higher risk to develop diabetes, potential hip and knee displacement, early onset of puberty, increased ventricles, and reacurrence of tumor. I kid you not that one of the top listed side effects says "For those who had brain tumors, this medication could cause recurrence of tumor". Thankfully Dr. Pihoker had already warned us of this that there is no convincing data for this. This is exactly what any parent with a child who had cancer does NOT want to ever here. Then again we don't have a choice as human growth hormone is absolutely necessary not only for growth but cell production, musle growth, etc. etc.. So we take it and we hope she will be less likely to encounter the side effects.
Side note: I can't tell you how much I hate it when doctors tell me something is rare. It almost feels like they just told me it's going to happen because everything Teagan has is rare. Needless to say we use the words less likely:)
Teagan will be starting up preschool again this fall and Judd will be in 1st grade. We really like the special needs preschool she will be attending and it is at the same school where Judd attends. Both kids are excited for school but also tell us they don't want summer to end.
I can relate as I have so enjoyed being able to be with the kiddos the last year and a half and help care for Teagan thanks to all the generous donations of sick leave I received from my collegues in Issaquah School District. We all are transitioning into new territory but I continue to remind myself every day is new for not just me but everyone. None of us are promised tomorrow or can predict what will happen next so we just take one thing at a time. Time will always tell and just like time has gotten us to where we are today it will carry us forward.
Tomorrow morning Teagan will be in the chief of police ceremony at the Showare Center! Judd and Teagan are very excited about this and they will get to be in a motorcade. Anyone who wants to join is welcome as they have numerous kids attending who will be chief of polices from all around the surrounding cities. The Kiwanas club has also donated to decorate Teagan's bedroom as part of her chief of police gift which will happen on September 1st. MC Rustic Home will be decorating it for us Which we are very excited about! She is very excited about this and we are so grateful for all the kindness we have received from the King County Sheriff's Office towards our family.
We are putting the final finishes on our MVP app design through Sweet Tea Cancer Connections. Currently we are planning our first Gala and big fundraiser to help raise money to develop and maintain our app. Please check out our website if you are interested in learning more and/or attending. We have recently had some really exciting conversations with two leading researchers who do psycho social research in pediatric oncology and are brainstorming ways that our app can not only connect parents with children impacted by pediatric cancer but also contribute to psycho social research in the pediatric oncology community. I am extremely excited about the possibilities to create change and give back in a positive way to the community which I am now apart of!
Thanks for reading this update and hope everyone has a great rest of their summer! Thank you everyone for your continued support and kind hearts. It means the world to our family along this journey. We send you all much love!