Dear Friends and Family,
I thought I would write an update as Teagan has gratefully made some big improvements this last month. Our household (aka Teagan ) is now miraculously 6 weeks puke free! This feels quite honestly like 6 months for us given Teagan had been puking 2-3 days per week for the past 8 months. I am still rerouting my brain to the calmer more peaceful puke free journey of brain trails.
I just read over my last post briefly to see what was going in our last update and I am so grateful to not have as much to update about medically. Dr. Browd, Teagan's Neurosurgeon, once told us, the longer your family can stay away from the hospital the better off you will all be. I couldn't agree more. Thankfully we have been able to stay away from the hospital more than previously. Since the last update we continued to work with GI in an effort to figure out why she was having so much puking. We had noticed that after cutting out milk and obvious dairy foods, her puking was reduced down to one day instead of 2-3 days per week. When meeting with GI and again trying to unravel this complicated puzzle, I asked if we could go to an Allergist. Quite honestly I asked this for myself as I let her know that if I didn't have to restrict dairy, I didn't want one additional thing on my plate. The GI doctor said to me, I don't think it's really necessary but if you think that would be helpful I'm happy to write a referral. Our GI doctor is so incredibly kind and we have really appreciated her help.
The following week I took Teagan to the NW Asthma and Allergy pediatric allergist specialist. Teagan walked in the office like she owned the place saying hi to everyone and showing them her two new missing teeth. Don't mind that she swallowed both teeth as soon as they popped out but we don't call that a problem in our household:). I was so proud of how social she was as we waited and I filled out another 10 page packet of paperwork. We finally got to go back and see the doctor. They did the litany of pokes on her back and they all show up normal which was good. I then began describing the puking episodes which lasted anywhere from 1-3 days where she would puke every 1-2 hours on the clock for 24-72 hours and then the next morning pop back up puke free. He says to me, "hold on as I need to call another Doctor to consult on this". He stands up and doesn't shut the door. I then hear him begin to speak to this other doctor and preface the conversation with, " I have a very complex kid with a very rare situation". I have to say I cringe when I hear this language given we have heard these words a lot and usually what comes next is not good. I quietly got up and closed the door so that I could not hear more and instead wait for him to tell me once they got it all figured out.
Shortly he comes back in and tells me that he believes she might have FPIES. Food Protein-Induced Enterocolitis Syndrome. FPIES is an allergic reaction in the gastrointestinal system which causes severe vomiting and/or diarrhea usually within 2 hours of ingestion. The only way we will be able to see if she has this is if we go on a strict no dairy diet. He said it also could be fish but urged me not to change too many things at once in her diet. After 8 months of being a puke ninja, I decided to take both diary and fish out and potentially give us a break from puking. I must admit I sometimes feel like we are throwing ideas all over the place given FPIES is usually something kids her age would grow out of at this age but of course I was willing to give it a try. Sure enough, since eliminating dairy and fish she has been puke free!
In complete honesty, I was a little bummed out to imagine adding a strict dairy free diet on top of other care tasks. I never realized how dairy is in almost everything we eat. As I allowed more time for it to sink in, I realized that this really is a brain tumor parents dream come true. Ok, none of this is a dream come true but.....food is something I can control unlike the brain. Food is something I can do. Given this realization and some help from my sister finding new foods, I have become much more accepting of it and we are slowly getting better at this adjustment. Nowadays there are so many alternatives that honestly it is doable.
The timing of this and summer beginning could not have been better!
Looking ahead we have a few more appointments on the horizon ("few" is the best word ever):
* appointment with a GI Nutritionist this week to maneuver around getting calcium needs met
*appointment with the equilibrium doctor in Aug to explore if there might be multiple contributing factors
*6 month scan and endocrinology appt in mid August (previously we had been doing scans every 3 months the last 2.5 years, so this is the longest we have ever gone between scans to check for cancer recurrence-which we always believe will not be)
*3 month GI follow up
So far this summer we have been fun busy. Judd is doing everything and anything golf. This includes golf camp, junior pga traveling team, fairwood junior golfing, and hanging out with Dad golfing nonstop. That apple did not fall too far from the tree. We have introduced a few new therapies for Teagan to help aid healing this summer. She had her second session of hippotherapy (horse therapy) today. I can't tell you how nice it is to bring her to something that any kid would love to do which also happens to be therapy. She is enjoying it and her big brother is a little jealous. We also have her doing neuro-acupuncture. She is so brave and doesn't even cry when they put the small needles in her head that remain there all day. She also continues with her additional therapies which include PT, OT, speech, and neurofeedback on a weekly basis. This is what we "can do" to help aid healing for her.
I am hopeful that in the future I will not have as much to write about. That is always the hope. Now that she is not puking regularly she is building more and more strength. So much so that she is throwing down some really good fits lately. I'm grateful as ever that she has the strength and energy to do so. This doesn't mean I'm not exhausted but it helps to know that my son went through a similar process of figuring out emotions and grateful that she is learning to do the same. This fall both kids will be starting new schools since I am no longer working but we are hopeful this will be a smooth transition and so far have heard great feedback about both new schools.
I hope all of you are having a good start to the summer! I hear rain falling as we speak but it's still summer, right? Hoping for no new unexpected updates and simple ordinary summer days with friends and family. Thank you again for everyone's support and kindness. We are always incredibly grateful for all the joy and love we have seen through these last two and a half years thanks to you all.
*I thought I would share our newsletter for updates on Sweet Tea Cancer Connections too if you are interested.
Dear Friends and Family,