Post Treatment Updates

Thought it might be helpful to give an update as it's been a month since I last updated this and as usual life continues to keep us on our toes. Within the last month a lot has transcribed. It's funny as I always believe no news is good news but I have been working on this now for a month trying to get additional treatment for Teagan's post treatment side effects and it has been a slow process. Just this last week, after a month straight of advocating, I feel we finally have made some progress!

After returning home from Denver's hyperbaric oxygen treatment in May, I have been working on trying to get Teagan into more intensive physical therapy with the hope that now that she has more energy she could better benefit from additional therapies (our biggest concern getting her to walk again).  We had Teagan complete an occupational therapy evaluation, a physical therapy evaluation, and a speech evaluation with the intent to refer Teagan for intensive inpatient therapy services at Seattle Children's Hospital. This would include 3 hours per day of varied therapies (OT, PT, and Speech) throughout the day but would also involve us having to sleep at the hospital 6 days a week. I was not excited about having to sleep at the hospital but I will do anything to make steps towards getting Teagan to walk again and sleep is a small price to pay.  Immediately after completing the evals, Seattle Children's put in a request to insurance for intensive therapy for Teagan.  Unfortunately our insurance denied our request. Thankfully there is always the option to appeal these decisions.  We had 3 days to to do a peer to peer (our rehab doctor speaks directly with the insurance doctor) but unfortunately our doctor missed this deadline. This left us with a new 30 day deadline to do a written appeal. Our Rehab doctor completed this the following week and again we were denied as they let us know that Teagan would equally benefit from outpatient therapies instead of inpatient intensive therapy.  

Somehow it has become quite common that after I get disappointing news something good comes around the corner.  Maybe it doesn't always but I like to believe this.  I literally got off the phone with our insurance case manager upset over this second denial and feeling quite literally like who is willing to help take responsibility for all these side effects my daughter has, when my friend Stacy, text me the name of a place, Rehab without Walls, which come to find out offers intensive therapy in the outpatient setting. As you could imagine, I picked up the phone right away and learned within minutes of the insurance denial that I will be able to take Teagan to Rehab without Walls in Lynwood daily for the three weeks before I go back to work and Teagan will thankfully get the intensive therapy I was so wishing for her this summer. Better yet we get to sleep at home with is much easier on our family. We are waiting now to find out when she will begin but are excited that this turned out better than what I had anticipated and now am thankful for the denial as I would likely not have found this without it. 

Teagan will have physical therapy for one hour a day every day for three weeks. This session will be followed by alternating days of the second session include one hour of occupational therapy and the next day one hour of speech (flipping everyday OT and Speech therapy on alternating days).  We are going to start out with two hours every day and then if she can handle more we have the option of going to three hours a day but given she is only 3 years old I'm thinking two hours will be a good push.

We also found out a few weeks ago after getting an artificial stimulation of human growth hormone IV test for Teagan that unfortunately her body no longer produces human growth hormones.  This is another side effect of radiation as the radiation Teagan received harmed her pituitary gland which affects her thyroid (which she now takes daily medication for) and her human growth hormone production (hgh). Thankfully her cortisol levels were normal so we don't need this addressed as well.

We learned that Teagan will now need to receive human growth hormone injections once a day for the rest of her life.  When our Endocrinologist told me this on the phone it was alot to take in.  I was very emotional and continue to be about this. It is hard to accept having to give your child injections for the rest of their life (or she will have to give herself these eventually the rest of her life).  After learning that her level was 2.0 and 7.0 is the cutoff for needing human growth hormones it seems obvious that she had a need. Her feet also can fit into the same shoes she walked into chemotherapy treatment with a year and a half ago and she is struggling to put on muscle on her body.  I learned from my friend Google that, "When growth hormone is released from the pituitary gland, it “tells” the liver to release a second hormone, called insulin-like growth factor-1 (IGF-1). Together,growth hormone and IGF-1 tell the bones, muscles, and other organs and tissues to grow by adding more cells".  You could begin the imagine the laundry list of issues that could follow if we were not to give Teagan this as her body would not be producing more cells in her body not just for growth but also for organs and tissues in her body.

Learning the necessity for hgh, I came to terms as best as one does and continues to try to.  Shortly thereafter, I was informed that insurance denied the prescription for human growth hormone saying Teagan is not in the lowest 3% of average height of her normal average peers. The "normal average peers" stuck out to me as unfortunately Teagan's path is far from normal or average. Thankfully the endocrine Nurses at Seattle Children's are incredibly helpful and connected us with the Pftizer Bridge program that brought out our hgh for Teagan today and will cover the first three months for free to allow Teagan to get this much needed hgh until the appeal goes through with our insurance. I am hopeful once they know her history this appeal will be approved as she honestly would have quite costly medical problems if her body did not continue to produce new cells and grow.

I must say navigating the whole post treatment side effects is quite a process. I am finding the way to find services for your child often involves talking to other parents who can refer me to other places as unfortunately I have not found any type of survivorship services that helps guide families. This is quite a shock to me as pediatric cancer has been around for so long. I keep trying to think positively saying that it could be that unfortunately Teagan has suffered quite a lot of side effects so I am in need of more than the average rehab services but it just seems like some type of survivorship services might be available for these kiddos who often will be living with a lifetime of side effects from these treatments.  Don't get me wrong I get to do this and if there is one thing I'm going to "die on the hill" for this will be it but I just can't help but wonder about other parents who don't find out about these other services via happenstance and what type of follow up care these kiddos get. I'm finding in my small sample of others parents I have met that the follow up services, short of everyone's MRI's, vary so much child to child even if the kids got similar cancer treatments.  Can't help but to reflect on this.

Finally last weekend, I got the privilege to attend the ISPNO Neuro Oncology Conference in Denver with my sister Meghan. It was so great to hang out with Meg, sans kids, but also was a huge support for me to have my big sister with me while I sat through the entire Family day learning more in depth about all the side effects from treatments, learning how to best talk to our kids about cancer as they develop and grow older, learning what is best in terms of nutrition for kids post treatment, palliative care topics, a nonprofit section learning more the lay of the land for pediatric cancer nonprofits etc., etc.  This was the first psychosocial support services I have ever found for parents post treatment and I am so grateful for attending this conference.

Having heard and sat through our end of treatment summary, I was familiar with some of the side effects but I quickly realized my sister had not and it was so incredibly supportive to have her sit  with me and understand how hard this can be to hear this information. For example, hearing certain things like you should apply for SSI now, because there is a chance your child may not be able to live independently in the future. Hearing radiation's side effects referred to as the "gift that keeps giving" as we already are living the side effects and I fear for further damage from radiation. At the same time, I also met two other Mothers whose children had medulloblastoma (same type of cancer as Teagan) and their children's cancer relapsed. Both Moms were able to find an additional treatment that they taught me about and I was able to see both of their son's there in person alive. I had previously believed that if Teagan's cancer returned there were likely not many, if any, options. Meeting these two other Mothers alone gives me such incredible hope.

We are hopeful that Teagan's intensive therapy will be beneficial for her and I am working on getting a therapy schedule worked out that Jeff will be able to keep up with while I'm at work starting back up in August.  This journey is not easy I must admit.  The grieving that is involved for parents who have a child diagnosed with cancer and they lose their old family norm is complicated. This grief appears daily often and rears up even when unexpected. That being said, I always keep in perspective that I "get to do this" and work to continue to have grace with myself all along the way. One person I recently spoke with said to me, "Life if funny and not the ha ha funny. You never know what's coming but it has a way of making you a more beautiful person through all this.". I like her spin as I work everyday through tears and happiness to spin this as best I can. The alternative is much much harder so I'll keep spinning things towards the positive while also acknowledging the depth of grief and pain that comes along with it. 

Thank you for everyone's continuing support and love along the way. This journey is not one that ends when treatment as we are living and learning this daily.  August 16th, Teagan gets to be the "chief for the day" for the King County Sheriff's Office. My friend's husband is the Chief of Police in Covington and they invited Teagan to be a part of this special day for her and Judd. Teagan will have a full uniform and get to be the Covington Days Parade and on the 16th of August be in a motorcade from the Showare Center to the Burien Police Station. Quite frankly, this continued support continues to fill our sails with energy and hope and show us how beautiful others are around us. We are constantly reminded that there is no shortage of love in this world and how beautiful this is to see over and over.