Hello to all our supporters and friends!
I wanted to make sure to write an update as I have been meaning to but not yet done so. I noticed the last update I did Teagan had started preschool and just had a good scan! Two weeks ago, thank goodness, Teagan got another clean scan! This was a big one (who am I kidding they are all big) as we had been dealing with a month of random puking which always raises the normal level of concern.
Think I may break things down a little given the time of night I'm writing this for a quicker update if possible:) I'll give you the best news first:)
*October 20th, 2018
Sweet Tea Cancer Connections held it's first Gala! I still cannot believe this happened but thanks to Sooze Johnson's amazing help, the amazing help from all our volunteers, the incredibly kind people who donated and contributed to the event, and all our attendees (it sold out at 170), it went off magically. We had anticipated 50k as our goal to raise money for the development and maintenance of our app and it came in at almost 130k. I still can't believe this happened. We had an entire table of folks from Seattle Children's who were Teagan's providers and supporters of the app there as well as table of my cancer parent friends who so graciously attended and are incredibly supportive of our cause. Thank you to everyone who was a part of making this happen as it was an incredible group effort. Please know thank you's are in still in the works and apologize for the delays ahead of time as they are still coming.
*Oct 21st at 6am (4 hours after returning home from the Gala..it was a late night) I woke up to Teagan puking. I have never experienced such a high and low in such a small time. Teagan continued puking on and off for the next month. Thankfully through a method of ruling out potential causes. Jeff and I asked our Endocrinologist to check her cortisol. Right away we found out that unfortunately Teagan suffered the 3rd piece of the trifecta of radiation damage to her pituitary gland from proton radiation.
Trifecta of proton radiation damage break down:
1.) Damage to thyroid-daily medications for life-easy tablet
2.) No longer produces human growth hormones (hgh)-nightly injections of hgh for life
3.) No longer produces cortisol-3 x day hyrocortisone (natural steroid) for life to replace her cortisol. Without cortisol on board, it can be fatal so this is a new necessity.
*We also have to be watching now for early onset of puberty at age 4 or 5 related to pituitary damage as well. If this was to happen, she would need an additional medicine to delay puberty.
*Beginning of November:Thankfully we figured out the addition of hydrocortisone to make up for the lack of cortisol around early November. We immediately began to see the improvements for Teagan once hydrocortisone (natural cortisol steroid replacement) was on board. She stopped puking sporadically, her energy levels went up, she stopped spacing out as much, and her overall energy levels improved. Hallelujah!
*November 16th- Teagan had her 3 month scan. We were able to fit 4 appointments in on this day. The first was sedation and her full MRI brain and spinal scan to check for recurrence of cancer. The second was learning how to give an emergency cortisol dosage in Teagan's leg if Teagan was not able to keep it down. The third was meeting with the Endocrinologist to check her thyroid, human growth hormone, and cortisol levels. Fourth, we met with a dietician who is working with us given the potential she may have damage from radiation to her hypothalamus which controls appetite. Lastly, we met to hear our scan results with thankfully the best news was saved for last. We were able to drive home that afternoon with a tremendous sense of relief and excitement for the holidays.
*November 26th, 3 days ago-Teagan woke up and began puking. 6 times in total the first day.
Let me break down puking for you. Puking is concerning for many reasons for a parent with a child who had brain cancer.
-Puking is what first began happening for Teagan when we found out she had brain cancer. It is a common symptom when kids find out they have brain cancer. One always fears something wrong in the brain after all that she has been through which began with puking. How could you not:)
-Puking could mean her shunt (which drains cerebral spinal fluid out of her brain to control pressures in her head) could be failing. Mind you this kiddo has a recalled shunt which they thought would be fun to try and a chemo kid (I'm being sarcastic as the intention was good but naturally puking for her raises huge alarms for neuro surgery who would rather have her shunt replaced). The problem with replacing a shunt that has not shown us it is not working is that they can't guarantee the next one will work.
-A third concern is on board since this month now with puking. Unfortunately Teagan no longer produces adequate cortisol. Cortisol is the hormone that controls fight or flight. It also regulates blood pressure. If she was to get in an accident and stress levels went up or she was to faint, she would not have anything on board to regulate blood pressure which could result in death. Thus no matter how sick she is we must be able to give her her hydrocortisone which would prevent such.
So here we are today. Thankfully at 4pm yesterday Teagan stopped puking and turned a corner. I came home from work as Jeff was home all day with her and Judd now has a fever. I was able to give him Tylenol and he stayed home recovering at home today. It is interesting I have to say to have two kids get sick so close to each other and notice the drastic difference in our approach to their sicknesses. It is quite the unique experience when you realize that if you just let the puking run it's course, or like in this case her stomach bug, but in doing so miss a shunt failure it could be life threatening. Furthermore if she can't keep down her cortisol meds due to puking, she also risks a life threatening situation. All of this for what we are hoping was just a stomach bug. Man is this ride exhausting at times.
Yesterday I explained it like this to Teagan's School Nurse who thankfully I also work with and know. Cancer will not take her quickly. Lack of human growth hormones or thyroid will not take her quickly. Her shunt malfunctioning could kill her quickly. Not having cortisol on board could kill her quickly. Given we have multiple life threatening issues on board with varying degrees I try and focus on the most pressing. I noticed the health room assistant listening to us with an interesting look on her face . Yes, this is not normal I agree but I don't know how else to say it.
Living with a child with multiple life threatening conditions is a unique experience. I realize I am not alone in this and there are many other parents out there who can relate. It is hard at times though to explain the thoughts and perspective it brings to you on an hourly basis. I often am asking myself am I overreacting a lot given all we have been through and my sense of knowing I see things differently now and have many triggers in the medical/hospital setting from the last two years. Sometimes it can feel a little isolating but thankfully I have made other friends who understand this and these connections mean the world to me. There are times where I want to just go hide and get away to try and get a break but that is not a choice nor do I want to do so and miss out on life. Others ask how I do this or say I'm so brave. I honestly don't have a choice. What I am doing is living one hour or half hour or minute at a time while keeping hope alive. Hope is what I live on:) I wake up everyday not knowing what today will bring but am hopeful for the more life I get with my loved ones. It ain't always pretty, don't get me wrong, and it sure aint' easy. But this is the reality I am better of accepting than fighting.
We cannot thank everyone enough for the continued support. I had originally wished that once we got done with treatment our life would get back on track and I wouldn't still be writing updates. I have since realized and learned that we are on a new path. I continue to learn that this new path then often takes new unexpected paths on a daily or hourly basis. I want to make sure to show my gratefulness for everyone's continued support and thus wanted to update others. I have had a hard time not continuing to ask how this all happened but am trying very hard to reframe this and just say this is happening. It is helping take out that additional layer of suffering for me asking why. Why does not help anything honestly for me and I am learning to not ask why because it doesn't really matter why. What matters is for the moment both kiddos are tucked into bed at home, I'm in the comfort of our home, and I'm grateful for this moment and hopeful tomorrow will come and I will get to enjoy another day with my family and friends. It really can be that simple for me:)
Thank you again for your continued supports, well wishes, and prayers. This support continues to help our entire family along these new paths that arise along the way. We are so grateful for all your support and hope you have a great weekend!
Hello to all our supporters and friends!