Denver Housing/Treatment Update

Hi All! I wanted to send a quick update as I have had so many people graciously offer to assist us with our housing search in Denver, Colorado. I figure this will be the easiest way through one update to update you all.  I must say my sister, Meg, did such an amazing job of writing these while we were in treatment that writing these updates now still feels new to me. I am forever grateful for Meg's updates to you all!

I must say I am constantly in awe of what nice human beings this world if filled with!  Thank you everyone who has reached out to read my last update and also to those who have been in contact with me with ideas and connections for housing in Denver. Yesterday we got confirmation that we have been accepted to stay at a place called Brent's House in Aurora, Colorado. Brent's place is a community house that allows children with cancer to stay there. It is similar to Ronald MacDonald but it has two bedroom furnished apartments with your own kitchen.  I originally did not think we would qualify as it typically fills with cancer kids who are going through bone marrow transplant procedures and need a super clean place. I honestly called hoping they might be able to tell me about other resources but to my surprise they said that she would not normally be accepted given she has compelted treatment but currently they have open rooms so we could come!

I cannot tell you what a huge relief this is!  We had quite some trouble finding a place without knowing a for sure end date of treatment given we have to wait to see how Teagan responds to her treatment. In other words, if the treatment does not work they will terminate treatment early.  Furthermore, I feel so much better knowing I will be in a place where they have other children that Teagan can interact with, they have a play toy she can play on and lots of toys, and that I will be surrounded by other families who have a common understanding of this world of cancer.  Anyone who knows me well, knows I typically am a big fan of my independence. I can simply say life has changed quite a bit now. When going through treatment, being away from home, not having our family together, and dealing with all the fears that I still have on board from the last treatment we went through I am comforted knowing we will be in a little community and not alone in an apartment by ourselves going to and from treatment.

So what is next....

Tomorrow we go in to Seattle Children's Hospital to do a third cortisol test for Teagan. Unfortunately after getting two blood draws, Teagan's cortisol and thyroid levels are low.  They also are watching her growth hormone levels as well.  Unfortunately, another side effect of radiatioin is potential damage to the pituitary gland in her brain.  We have learned from meeting Teagan's Endocrinologist that the pituitary gland controls cortisol levels, thyroid function, and human growth hormones. Tomorrow, Teagan will get an IV at Seattle Children's Hospital's Infusion clinic while they give her a medication to artificially stimulate her cortisol and then will draw blood from her every half hour for a total of three times.  From here we will learn more about her cortisol and next steps we may have to take to help this piece. Following this, we will need to then learn more about her thyroid as well as her growth hormones.  

Next Tuesday, the 6th, Teagan will have tubes placed in her ears at Seattle Children's so that the pressure in the hyperbaric oxygen therapy multiplace chamber does not cause her ear pain or potentially damage her ears. 

Next Thursday, the 8th, Teagan has her full 2 month post radiation necrosis MRI. This is a big scan as the doctors already told us there is always a 5% chance what they are calling radiation necrosis could be recurrence of tumor. 5% chance doesn't seem like much but she had a 3% chance of getting radiation necrosis so quite frankly I live in a world of 5%=50%. Thankfully I am well aware my calibration is completely off and gets further off the closer I get to scans:)  We always hold hope close around these times:)

We are currently waiting to hear back from the doctors for the last confirmation on treatment start date but we are hoping the week of the 12th we wil be able to move down to Denver and get Teagan's treatment started.  We are planning on telling Judd this weekend and thankfully we have two sets of Grandparents and my sister in law who live in town to help us cover the care of Judd while Jeff is working and out of town.  

Long story short, we could not do this without family and friends. We are beyond thankful for everyone's support from near and far. I thought I was going to hop on and give a quick housing update and here I am carrying on.  I suppose this is because this is not easy. When there is the potential to try a treatment that could help heal our daughter's brain, I can handle "not easy" and am happy to "bring it" on my daughter's behalf. I no longer fight tears like I used to before as it is just now part of what happens when you are reminded of life and death on a daily basis.  It puts you so close to the meaning of life that it carries such beautiful highs and joys like I have never experienced before but also such hard and difficult times and emotions.  This brings you full circle as a good reminder to truly be grateful for every day we are here and healthy!  

Thank you again and I will do my best to keep you updated as we go along!

Tatum

Tatum FettigComment