2 of 8 weeks in tomorrow
Dear Friends, Family, and kind Followers of Teagan's progress,
I wanted to write a little update on how things are going for Teagan as tomorrow will be her full 2nd week of hyperbaric oxygen therapy treatment here in Denver, Colorado. So far she has adjusted well. She no longer cries in the morning asking why we have to go which is a big Mom relief (phew!). She does cry every morning when I put her down in the chamber but thankfully quickly stops as I can hear her from outside as she begins playing with her animals and toys. Given I can't be with her in the chamber, I have selected a nice collection of toys and books to help pass the time as it is 2 hours from start to finish. The toys I can send in must be plastic and not have air inside them as with the pressurization this could cause toys with air in them to explode. In addition, only certain papers or coloring books can go in with her that are not a fire hazard. Luckily we got all the toys squared away and she has quite the set of legos, plastic toys, books, and snacks to help her through the daily treatments. I promise her a sucker everyday after she gets out and she never fails in reminding me. Gotta enjoy the little things in life and not worry about the small stuff (like too much sugar) she reminds me as she pops in her sucker and takes off down the hall to the car to leave!
Everyday Teagan walks into treatment on her own which is about 1/4mile walk each way. In addition she is walking to and from the car. This may not seem like a big deal but she has not had the endurance to do such for quite some time so this is very exciting for us. I bring the walker everywhere now and we use it like any other kid who walks unless it's something I need to get done in a timely manner. Teagan daily has taught me to slow down in life. This I am very thankful for and I must say this has not come easy for me as someone who loves checking things off a list. Don't get me wrong, I still love making a good list, but I have learned to ask myself, sometimes out loud, what's the rush? Where I am rushing to? What's the rush of living life when all we have is now or today. Through this journey I have realized I am often rushing to nowhere. So thankful for this lesson she teaches and reminds me everyday!
We have also noticed that her ataxia (shaking) is a little bit better (not a lot but a little). The doctor today said that they don't expect for us to see changes or differences from treatment possibly for another two weeks to a month. So we will continue taking her there daily and hoping and believing in positive results. Today for the first time yet, she did not cry when I left her as she told me she was going to show Judd how brave she was. I think we all get by now how brave she is:)
Judd and Jeff were able to fly in last Friday together and we got to spend the day together on Saturday as a family. Unfortunately a water pipe at home burst that brings water into the house so part of the day Saturday was spent figuring this out from afar. Jeff flew out Saturday night as he had to work Sunday morning but luckily Judd is staying with Teagan and I this week. It has been quite the adjustment for both kids who are so happy to see eachother but also having to learn to share again as they are not used to this. Had a few little disputes over toys but honestly everytime this happens I am so happy that a.) they are together b.) Teagan is healthy enough to fight back and c.)they are both portraying developmentally appropriate behavior-fighting with their sibling. Sunday we got to go to the aquarium and it was so refreshing to be able to do a fun outing!
Last Friday, unfortunately we learned that the one other boy we met Teagan's age that had the same type of cancer, Hunter, passed away. His Mom had reached out to me during chemo and is one of the most positive and hopeful cancer Moms around. I must say that this hit very close to home as this is the first child that our family actually knew the family of who died of cancer since Teagan was diagnosed. This is Jeff and our worst nightmare and with it being the same type of cancer it hits even closer to home. I cannot imagine the pain this family is experiencing. It has been amazing to see the community of Maple Valley rally around this family and to see all the love being offered up to them.
A few weeks ago as well, I learned that Sooze Johnson, who is the reason Sweet Tea Cancer Connections (STCC) is as far along as it is currently, was diagnosed with lung cancer. I met Sooze last Spring when she came to our house to do a spotlight article on Teagan for the Golf and Country Club we belong to. Teagan warmed right up to her and when I told Sooze about the app I was working on creating she asked how she could help. I wish I could explain all the ways she has helped and assisted STCC because it is beyond explainable. This woman is a powerhouse and comes from a professional background where this is in her wheelhouse. I am still in disbelief of this news but always, always have hope that the doctors will be able to treat and restore her health. We often send Sooze videos to try and thank her for all her help and recently I explained to Teagan about Auntie Sooze's cancer and then asked her with video playing what she thinks (we try to be completely honest and open with our kids about cancer). Teagan says to the camera, "You'll be ok Auntie Sooze. I'm ok. I've got a dolly." It warms my heart to see a three year old showing compassion and empathy while also spreading love at such a young age.
We are looking forward to this weekend being able to fly home and be together as a family with the four of us for Easter weekend. One thing being away from home does is truly help us appreciate our home, our family, our community, and all the little things that we associate with home. Thankful for this!
I must also say that we are so thankful for all the gifts and cards we have received while here! I can't thank you all individually in this post but please know how much we appreciate your kindness. I can't tell you how warm it makes us feel to see our mailbox full and Teagan gets beyond excited. Just today my cousin Linda from Michigan sent a care package with bunny handprint pictures from all the kids in her preschool class. To know that other little kids are thinking of Teagan and wishing her well makes me as a Mom, who sometimes worries about how much time she gets here on earth, so happy to know that she is helping others spread love! We are beyond thankful for all your positive thoughts, prayers, and well wishes for Teagan. I truly believe all this positive energy, prayers, and well wishes are working and please keep them a comin' Teagan's way!
Hope you are all doing well and having a great week!