May 2018 Update

Hello All,

I just realized my last update was at the beginning of May! Yikes. Thankfully we have been busy in a good way! 

Recent Updates:

*Returned home on May 7th!  I have never felt so cozy in my home and grateful to be home! I have a complete new empathy for families who have to uproot for treatment for their kids. Not that I didn’t before but just have a little different perspective now. Brent’s Place was amazing and we could not have been in a better place. The friends we met, the staff, and the volunteers were beyond great! We are so thankful for all their help in Denver! 

*Two days after returning we got Teagan another thyroid test. This was Teagan’s third test and it ended up still being low. Low thyroid level is often a side effect from radiation as the radiation can impact her pituitary gland which controls her hormones. We now have her on a thyroid medication and in a month we will recheck her levels through a blood draw to see how her body is reacting to this new medicine.

*Teagan started preschool a week after returning from Denver without a hitch! She is loving it and literally on the first day turns and waves and says, “Bye Mom!” Needless to say, it wasn’t quite so easy for me but luckily I made it to the fence and out of site before breaking down in tears. It is hard enough as a Mom leaving your child for the first time but this was particularly hard! Teagan and I have been together pretty much everyday since Dec 5, 2016 so you could imagine the emotions. Thankfully Jeff was there to help me pull myself back together. He is my rock.

*After dropping Teagan off for her first day, I got a call from the hyperbaric oxygen clinic in Denver. Teagan we found out was approved for an additional 20 oxygen treatments. We are currently working on seeing if we can get the expiration date on these extended to allow more time for her to reap the benefits of the first 40 treatments before exploring the option of additional treatments. 

*Teagan got a clean scan on May 21st! Her new scan continued to show improvements in the areas of radiation necrosis and most importantly no evidence of disease (no cancer)! These continued improvements in the areas of necrosis we feel are connected to her latest hyperbaric oxygen treatments but of course we will never be able to say with 100% certainty. I was more worried than normal about this scan given the radiologist were never able to 100% completely rule out recurrence of tumor and if so there would be a chance,though debatable, that the oxygen could feed the tumor. We were beyond relieved with this positive scan!

* Teagan got her human growth hormone infusion test last week. This requires an IV where they artificially stimulate her human growth hormone and then measure it 4 times following. We are a little worried as her shoe size has not grown much in the last year and a half and she has low muscle tone. It is hard to tell though because  she has foot braces so all her shoes are two sizes too big in order to fit the braces.  Additionally she has had so many steroids that she lost a lot of muscle tone. We are hopeful that this test will rule it out and should find out next week. If not, she will need human growth hormone injections the rest of her life. 

*This week Teagan will finish her 2nd and 3rd assessments to see if she might qualify for intensive inpatient therapy at Seattle Children’s Hospital. This would require we stay inpatient overnight at the hospital at Seattle Children’s for two to four weeks sometime this summer. Teagan would get 3 hours of therapy per day (likely physical therapy and occupational therapy) and our hope would be that now that she has so much more energy and endurance she could handle this
and makes gains. We are hoping to find out if she qualifies and if insurance will cover it in the next few weeks.

Wow. After writing this I realize this is a lot. Sometimes you forget when you’re in it and then there are moments, like now, when you write it down and it makes you reflect. This is a lot at times to swallow all of these things going on. Thankfully much easier to though when we are at home and contemplating treatments to assist her in healing.  I remind myself again and again that we get to do these things. Every month, sometimes more than once a month, I see kids we have met through treatment who are are no longer here due to their cancer. It is heartbreaking to see and hear this.

Just today I learned that one girl we met at Seattle Children’s and who also had brain cancer passed away. I will never forget meeting her as she was the kindest young soul. We chatted with her and her Mom for a while and then when we were about to leave to go into the patient room she turned to Teagan and tells Teagan, “you got this”. Witnessing the love from a young girl who had brain cancer telling my two year old daughter who had brain cancer she’s got it, brought tears to my eyes.  The amount of love I have witnessed through this journey is endless and something that forever has changed my life. It helps remind me when I get frustrated or exhausted, which honestly happens quite frequently, that we get to do this. 

Hope you are all doing well and enjoying your precious lives! Today is National Cancer Survivor Day. Thinking of all those here on earth as well as those no longer here who have survived cancer today.