Happy Birthday Brynlee!

 Happy Birthday to Brynlee! Thankfully this year of Brynlee's life has been completely free of chemotherapy and cancer treatment. One year ago on the 25th Brynlee had her last dose of chemotherapy, and one year ago on her 1st birthday she had her last blood transfusion. She has been off of active treatment for her cancer for one year. I wish I could say that she has been "cancer free" for one full year, but this darn neuroblastoma is not completely gone out of her body; however, inactive cancer leftovers are better than actively growing cancer, so we have settled for "stable."

 

Here she is a year ago trying to choke down that birthday cake even though the chemo made it hard for her to tolerate anything that was sweet. Bald and beautiful!

 

 

And here she is now with a full head of hair, and she loves her sweets and treats.

 

I would have thought that things would have been easier a year out from cancer treatment, but Brynlee isn't your typical neuroblastoma baby. If anything, things seem to be more complicated and harder now than they were a year ago. I think it's one thing when your baby is disabled and doesn't know any better and sleeps a lot and isn't very demanding, but it gets harder and harder to satisfy all of the needs and wants of a 2-year-old little girl who doesn't want to be left out and needs help to go everywhere she wants to go and help to do just about anything she wants to do.

 

Over the last few months, I think the weight of everything (cancer, disability, etc.) have really sunk in and we have really felt the weight of all of this in our lives and the reality of the situation that we have been left with. Our house is slowly filling with therapy equipment. We are the ones responsible for her daily therapy, and we don't even know if it will make a difference in the end. Sometimes we wonder if all of our efforts to help her to have that very slim chance of not being confined to a wheelchair are worth it or if it would be better to just throw up the white flag and give in and just be mom and dad. But if we don't fight for that chance for her, no one else will, and so we carry that heavy burden of doing all that we can to help her. It's not fun! Saying that we are tired (in all aspects of being tired) is an understatement. We still have a lot of raw emotions. It still hurts. It is still overwhelming.

 

As I mentioned, we are responsible for the majority of Brynlee's therapy at our home. In order for therapy to be effective for Brynlee we have to do it daily. I am not going to lie and say that we do this perfectly because some days it just doesn't happen. After all, I am not a physical therapist and most of the time I do not feel like I know what I am doing at all, and I do have two other children, a job, a home, and all of the things that we all have to deal with.

 

I thought I would give a quick rundown and glimpse of what we do at home for therapy and what our lives are like a year post treatment. We usually stretch Brynlee's legs in the morning and again before bed. Paralysis can cause the muscles to get tight, and some people even have to get injections to help with this and/or to help with spasms. Fortunately, Brynlee hasn't had too much trouble with this, so we continue to stretch her Achilles tendons and her legs and feet every day. We also have an electrical stimulation machine that we use daily for Brynlee. I have been given differing opinions on how to use this and for how long, but we usually do about 20-30 minutes per day on different areas on her legs, hips, lower back, basically wherever on her lower extremities that we think she needs some muscle reeducation. Here she is all hooked up to her quads and her hip flexors. And, yes, I have shocked myself a time or two.

 

 

We also have a home exercise program from Now I Can that we are supposed to try and do a few of the exercises each day. I suck at this and don't know what I am doing. Brynlee seems to remember all too well that she didn't like these little stretches and exercises while we were there, and she rebels almost instantly the second we try these, but we still try. We also work on tall kneeling and whatever else we can do to help her strengthen her arms and her core.

 

We also have to get in standing time for many reasons, but having Brynlee weightbear is very important for her joints. Now that we have the standing wheelchair, she does get most of her standing done in that, but I'm sure she needs more, and we work on increasing it all of the time. We also try to help Brynlee in her walker, which is tricky. Usually if I get her leg wraps on to support her knees then I can get her to do a little bit of walking, but it feels like I need about two or four more hands to do it because she still requires a lot of support moving in the walker.

 

And finally, Shriner's hooked us up with a suspension walker that we can use on the treadmill. Here it is.

 

 

This picture isn't the best because she isn't holding on and is leaning forward, but we run the treadmill at a very low speed and I kick her little feet out for her and make her walk. Our goal is to do it for two songs, which is usually about 6-7 minutes, but I guess studies have shown that daily treadmill walking for even 5-10 minutes can make a difference. So who knows. It is a workout for my arms that is for sure. However, so far, Brynlee has tolerated it so well and been cooperative. I think she kind of likes it, at least for those two songs.

 

We usually have at least one appointment or more each week for Brynlee. We usually have some kind of therapy appointment each week. We also have regular 3-month checkup appointments with her oncologists, her rehabilitation doctor, her orthopedic doctor, and whatever random things pop up, like orthotics and whatnot. Oh, and don't forget those fun scans to check on that cancer. We usually have 2-4 days worth of scans and other tests (hearing, heart, bladder) every 3 months, which include daily sedation and IVs.

 

When I had Brynlee two years ago I would have never imagined all of this. In fact, we had much, much different plans for the next few years. Dreams and plans are lost and changed and you do your best. You adapt, you change, you push on.