Care Coordination

I have been meaning to do an update but so much has been going on with Teagan that I keep waiting to to do an update once we know more. Unfortunately we continue to keep waiting and still don't have any answers but we are feeling like hopefully we are beginning to get closer to an answer.

Three weeks ago Teagan had a clean scan! We were originally planning on doing it on the 27th but a week prior we noticed that Teagan's ataxia (shaking) had increased, her one eye seemed to be more off center than normal, and her puking was continuing. We got an emergent scan done as our concern beyond the potential of cancer returning was that possibly her necrosis could be spreading. This would be a big deal given it is located next to the brain stem and necrosis spreading could be mean paralysis or death. Naturally with the help of our team at Children's to do an emergent scan and thankfully it did not show any evidence of disease and no necrosis spreading. Given our scan was emergent we only were able to get a brain scan and not a spine scan as well. The 27th we returned for her spine scan and thankfully it was clear as well.

I noticed I didn't do my typical post about a clean scan. I think the reason being is that we have been chasing puke around fervently without any idea what is causing it. Teagan has been puking typically for 2-3 days per week. We are now going on our 5th month of this with no one being able to help lead us in any direction. Puking of course is not just puking anymore as the big concern is making sure she can keep down one of her medicines which she takes 3 times a day and regulates her blood pressure. Also, as a Mom holding a child while they continue to puke over and over again week after week, it gets a little tiresome.

So much so that recently I have taken a leave from work to be available for the level of care Teagan is demanding. Last week on my 3rd day of leave, Teagan began puking again. We had an upper GI study scheduled that same morning so we went to this with puke bag in tow. Being the trooper Teagan is, she did as she was asked and drank the chalk like barium mixed with orange soda. After she drank it we had to position her on her side and back while taking multiple x-rays to watch the barium move through her system. At one point after drinking more as asked, she turned over and puked it right back up. Thankfully she was able to keep the original amount down enough that we could finish this series of xrays. Following this, we had to go out in the waiting room and for four more hours, every 30 minutes, we had to bring her in to take another xray of her tummy looking for progression of the barium through her stomach and digestive system. Typically this entire exam takes 3 hours but we noticed that Teagan's belly is pushing her food through extremely slow which got us out of there in 4.5 hours. The radiologists mentioned we may need additional testing to see if it might be gastroparesis. Gastroperisis means partial paralysis of the stomach. It is a common side effect of chemotherapy. We are hoping to learn more about the potential for this at our next appointment. If so, it may require yet another 4 hour test she will need to do with more nuclear medicine to truly make this determination. Meanwhile I need to return a stool sample to also rule out some type of potential bacterial issue. We also did a poop cleanse giving Teagan a large amount of miralax to clean out her system. Oh the joys of working to rule out every last potential GI cause:) Poop galore last weekend!

This week we have an appointment with Ear Nose Throat. A few puking episodes back right before we were leaving on mid winter break vacation, Teagan was puking and one of her tubes popped out. These tubes were placed last spring to allow her to go into the pressurized hyperbaric chamber. They were supposed to come out on their own in October but had not worked their way out. Apparently I heard from one of our Nurse Practitioners that radiation to the brain can cause one's ear drums to dry out and thus often kids will produce more earwax than normal. When Teagan's tube popped out it was covered in wax. We began to wonder if maybe she had something going on with her inner ear impacting her equilibrium and making her nauseous. I did some research and also found out that equilibrium issues are common for kids with posterior fossa syndrome which she had. I also learned from our Neuro Oncology NP that there are special doctors called Otoneurologists who are available to assist with this. I'm hoping we may be able to get a referral to look more into this.

Honestly it is really hard to not have any answers while we watch her consistently puking. One good thing about the last two years though is that our family has built some serious inner strength and we will not give up until we figure this out with the help of Specialists. Gratefully now I am available full time to figure this out as well. I have found in my experience as a Caretaker with a child with medically complex issues that her quality of life depends on the quality of care coordination and advocacy on my part. Unfortunately she can't tell me what hurts other than she doesn't feel good, her tummy hurts, or her head hurts. Naturally this leaves a lot of questions in between. There is a certain level of stress a parent/caregiver holds when their child is not feeling well. Then add to it the potential for what is wrong to be terminal (thankfully we aren't worried about this one right now with a recent clean scan). Then add the fact that we are going on 5 months now and us adults have not yet figured this out. It is frustrating to say the least. Frustration doesn't help get answers though so we will continue to advocate and coordinate her care between the different specialists while being grateful for the days she feels well and is not puking. After puking yesterday morning, she bounced back today and was able to go to her brother's hockey tournament and got to see her friend Maggie at the ice rink. This was his first tournament ever and it was a lot of fun to watch how much he has grown and learned this season. This morning he got the MVP award and we were so proud of him!

Thanks for everyone's continued support and checking in to see how things are going. We so appreciate it. It can be easy at times to wonder when we might get a break from this all. I have learned to stop thinking this way as I have learned it takes away from the moments I have now. Instead I remain hopeful the next update I will be able to let you know what it was that has been bothering Teagan. Until then, we will be grateful for every day she feels well and I get to be home with the kids and our family. Sometimes joy is as simple as that:)