We just got back from dropping Jeff and Judd off at the airport to return home and thankfully Teagan transfered from sleeping in the car back to her crib so I have some time to write. It's interesting how lonely coming back here to the apartment is without them is. We got to be together for four days straight and this was the longest time we got to be together in a month. Helps us truly appreciate all the time we have together as a family. The need to go "do stuff" is quite nonexistent I must say as we are happy to play in the play area here or go out to breakfast together as a family and that is plenty good enough. I think this may have to do with the fact that when you don't get to be together as a family what you do really doesn't seem to matter much anymore as long as you are together (at least for me).
I'm actually quite thankful for this as prior to Teagan's cancer diagnosis I often would go to great lenghts to think of what fun stuff we were going to do and sometimes would put unnecessary pressure upon myself to make sure we were coming up or keeping up with all the fun kids stuff to do. Having to relocate our family for Teagan's treatment, though don't get me wrong I would much rather choose something else, has helped create a clean and simple perspective on what really matters. I say clean and simple because it has helped me realize there are really very few things that truly matter for me and lots of litle stuff that doesn't matter much. Another thankful lesson that has reappeared yet again along this journey!
Last Tuesday, marked the 4 week point which is halfway through Teagan's hypberbaric oxygen therapy treatment (HBOT). Teagan continues to show improvements. Jeff and I were talking last night about all the improvements we are seeing which include increasingly less ataxia (shaking-especially less in her left hand), almost non existent staring off episodes, and a huge increase in energy which is likely one of the most obvious benefits as this allows her endurance to be such that she can now walk everywhere we go in her walker which was not possible prior to this. She also is able to wake up much quicker from her naps and her energy previously used to taper off around 2pm and this little thang lasts until you must put her down at night. Last night for example, her and her brother sharing a bedroom decided they were going to stay up and chat and play in her crib. Most often this would make me irritated but I must say I was beyond excited that a.) she could last this long into the night and b.)not only could she last this long but also had the energy to be trying to climb out of her crib and trying to wrestle with her brother.
Needless to say, we are very optimistic and thankful for the results we are seeing. Teagan also got to move into the large chamber last week with 4-6 other adults. Given how social she is she has adjusted well to this. Previously they had her in a smaller chamber by herself with a technician but since she was doing so well they moved her into the larger chamber now. Teresa, the Secretary, gives Teagan a new butterfly sticker everytime she comes out of the chamber and she now has her walker beautifully decorated with butterflies.
Along with her increase in energy she is now able to talk with others and her favorite sayings as we walk every morning to the chamber is asking other strangers, "What's your name?" and "What are you doing?". She literally loves to ask each and every person these questions. She also has a routine of stopping by the wound care and diabetes center front desk on our way and saying hi to her favorite person at the front desk, Ginger. Teagan in her true silly fashion calls her Gingerbread. Last week while walking out of the chamber, I put on some music as we walked out. Teagan loves to dance but music continues to calm me throughout this entire journey. We put on Can't Stop the Feeling by Justin Timberlake (Thanks Tenille for the song recommendation!) and Teagan proceeded to see one of the regular radiation nurses, Nicole, in the hallway and had a dance party with her. As you can see by her regular encounters of asking everyone their names and what they are doing she has made friends quite easily. I will have to get video of her moves as if you haven't seen them they are off the charts! They will make any stranger in the hallway smile! Her and Judd are quite the little dancers together!
Two weeks ago, they asked us if they can do a local news story on Teagan to help share the progress she is making. I have always been a little bit shy of the spotlight but I figure if we are able to help one parent to learn about this healing treatment and save them the months of research we had to do to find this, it will be well worth it. Sometime next week, they said they hope to bring the cameras in to do this story which should be fun. I'll make sure to share this when it happens.
Speaking of spotlight, Teagan made the spotlight last week on Children's Cancer Research Fund's (CCRF) Instagram Takeover. If you haven't seen these pics I would encourage you look up Children's Cancer Research Fund on Facebook as well as Instgram. CCRF not only helped share Teagan's story but also was so gracious to share with their followers about the app our nonprofit is creating. It was a little overwhelming in a good way to see 900 likes on their first post of Teagan. It always feel so good when other people making efforts to help the cancer community embrace us and are willing to help us out.
This among many other examples along this journey continue to affirm how generous and caring people are in this world. I continue to be humbled by the generosity and love which exists among our fellow human beings. When given messages of this not being so, I must say I don't listen and then consciously make efforts to be around others who share the same grateful energy. Life is much too short not to.
Lastly, thankfully Judd is now feeling better. On Tuesday night when Jeff got here, about 20 minutes after we got back to the apartment, Judd began puking up large amounts which lasted until 3am puking every hour. Thankfully Jeff was here and not me alone and by the next morning Judd was feeling better. Since this journey began with Teagan's sickness Judd's tummy has been pretty sensitive and/or often the way he holds his emotions. Cancer we have learned effects the whole family. We think it was connected with constipation and luckily there were no germs spread to Teagan as throwing up for her would be a trip to ER and likely concerns with her shunt, etc. She did show a decrease in energy following this but we are hopeful it is just the lack of sleep coupled with how easily her neurological symptoms are effected by lack of sleep. We are watching her closely now to make sure her energy returns once she is able to catch back up on her sleep. Thankfully, this turned out to be a huge break on our front with no puking from Teagan and thus no unnecessary ER trip.
Thank you everyone for your continued support. We appreciate your continued prayers and positive thoughts towards Teagan. Hope you had a great weekend and we look forward to updating you on Teagan's continued progress!