The Cancerversary Post

It's a little bit late, but I finally got around to doing a cancerversary post. The week that marked Brynlee's 2-year cancerversary I just didn't feel up to posting about it, and that's okay.

 

(This is the last picture I took of Brynlee after she had been diagnosed and before she had surgery. Blair was the communications director as I didn't feel like talking to anyone.)

 

It has been 2 years since Brynlee was diagnosed with cancer. In the cancer world that is called a cancerversary. I would imagine that every parent (well, at least every mom) knows by heart that date in their mind. For me, every time I hear the date August 29th I get butterflies in my tummy. Maybe that is weird to some, but it happens to me. There are so many things about Brynlee's diagnosis and those first few weeks that followed that are both sweet memories and haunt me at the same time. We were in PICU room #11. To the one side of us was an older girl in an induced coma. I never did find out what was wrong with her, but I remember feeling sick the morning I came in and she was gone. I asked the nurse because I was so worried about her and was reassured that she had just been moved to a different room that was a little bit quieter. To the other side of us was a room where at least 5 or so other kids came and went during our 2-week stay. Everything from a little baby, smaller than Brynlee, to an older teenager who had lost her legs in an accident.

 

The PICU is like sacred ground to me. I have never felt such a feeling as I did during our time there. I know that there must have been angels ministering to these children. Some of the feelings and impressions that I had in that PICU room #11 were unlike any other I have ever felt before or have felt since. Along with the peaceful feelings were many, many hard days and moments. That first week was a really hard week. We had moments where we didn't know if she was going to make it another day or to her first birthday like when Brynlee required reintubation and bronchoscopy a few days after her diagnosis, and we had a surgeon and anesthesiologist who very bluntly told us how risky and downright dangerous it was going to be to take her back to the OR and put her under. We had no choice, but she fought through it, and it worked. There were the never ending chest x-rays (at least daily), all of those CTs, MRIs, and imaging studies, and the several times a day respiratory therapy where they pounded and pounded on her back trying to get all of the gunk loose in her chest. We had some awesome nurses and doctors that we loved and some that were not as enjoyable to be around.

 

I could probably go on and on about those days, but the most important part is where we are today. Even though we have had some set backs over these past two years, Brynlee is doing amazingly well. She is an amazing fighter, and I know she will continue to do more and more amazing things in the future.

 

You might be wondering how we "celebrated" the cancerversary? We went to physical therapy, of course.

 

 

We actually got kicked out of physical therapy for a few months as we need to give her some time to work on some things and get stronger. I can kind of understand why they do this, but I don't really understand either.

 

For dinner we went and had a Habit burger.

 

 

Brynlee finished up her 4th cycle of isoretinoin treatment this last week, and by the end she was a pill swallowing expert. Well, maybe not an expert, but she had it figured out pretty good. It would take her a few seconds to do it, but after she would swallow the pill she would give us a smile (and ask for her Skittles, of course). I can only hope that she doesn't forget how to swallow those pills in the next two weeks because cycle #5 will be the same kind of pill. Hopefully I can get the other kind of pill for cycle #6 as I think they look like they might be easier to swallow.

 

So for the time, things are going to be pretty quiet for us. I am a little bit lost at this time. I haven't had so much free time on my hands in such a long time.

 

I know I sound like a broken record, but I am still looking for some more walkers and donations for the Salt Lake City CureSearch Walk, which will be held on October 5th at Sugar House Park. It is only $10 to participate, and I challenge (again) anyone reading this blog to donate $10 to our Kickin' It With Brynlee team in honor of Brynlee. To donate or register, go to www.curesearchwalk.org/saltlakecity and find team Kickin' It With Brynlee. The money raised most likely will not benefit Brynlee and her treatment, but the funds raised for research today will help future generations of childhood cancer patients, which could be your child, your grandchild, your niece or nephew. We still have such a long way to go to get better treatments for childhood cancer, which is hugely underfunded. Again, anyone that signs up and participates with us that day will get a Kickin' It With Brynlee wristband. Please help if you can! Thank you!