It's been several days since I've written anything. I've been so bust with physical therapy, speech therapy, occupational therapy, and nurses that I haven't really done anything with my time since Thursday when we got home from the hospital. We had a fabulous and fun fundraiser on Friday night at the Holiday Inn. We played Bingo and it was a blast. Brylee's ANC was pretty good so we took her to it. She only lasted about an hour and a half before she got tired and we left. I wish we could have stayed the whole time. On Saturday we did nothing but work at our house. Cory cleaned up the yard while I finally unpacked and did laundry from March! Granted nothing got cleaned but almost everything got put away hahaha.
I need to give everyone an update on Brylee. Everyone has been asking how she's doing and what the next steps are in treatments. So here it is. Brylee is doing extremely well. All the therapists are making a huge difference in her walking and talking abilities. Her mouth muscles are still not as strong as they use to be so her speech is a bit slurred. But she is chewing and swallowing well and she's actually talking to us again. I have my little chatter box back!! Allow she may have to repeat her sentence four times before I understand her. She is walking well. Her legs are still a little stiff but she's trying to walk. She'll walk till her legs give out and she falls over. Then she'll push her self off the ground and walk some more. She is such a strong willed little girl. She's my inspiration when I complain at Tae Bo and Boot Camp. She never gives up and I'm so willing to quit! Ha she teaches me so much everyday as I watch her struggle but yet still have such an awesome outlook and a positive attitude. Christ said to be as little children and I can totally see why now. She is so strong and such an inspiration to me throughout my day.
As far as treatment goes we are finished for now. Her doctor is scheduling an MRI for the end of May. Depending on what the MRI show will depend on our next step. If the MRI shows shrinkage and stability they will declare the tumor in remission. This means that we will enjoy life with no meds and very few doctor visits for the next 4-6 months (or until symptoms start showing again). When the symptoms come back they will do an MRI to see where the tumor is at growth wise and then most likely put her on a chemo and a steroid. If the MRI at the end of May shows growth and unstability they will put her back on chemo and steroids and we will go from there. Brylee will never do radiation again. The six weeks of radiation that we just finished is a life time worth of radiation for anyone's body. Sadly that will never be an option again for us.
Just a remind on what studies and statistics show for a DIPG tumor. Once they are diagnosed the patient does a six week course of radiation, chemotherapy, and steriods. Once that six week period is over they get four weeks off. At the end of that four weeks they get an MRI. The MRI usually shows that the tumor is in remission. The tumor will stay in remission for about 4-6 months, giving the patient a normal, symptom free 6 months. Then the tumor will start growing again, this time fast than the original growth. The patient is put on chemo and steroids to try and stop the growth. The tumor usually does not respond to this set of treatment and the patient passes away within a few months. 5% of patients will do this roller coaster of remission and treatments for 3 years before passing.
Brylee right now is showing no symptoms. Cory and I are hoping that this means she is in remission and we get to enjoy our normal Brylee for 6 months or long. We are praying that she is it that 5% so we have her more than her short 3 years that she has been with us (it will be officially 3 years on the 21st! Happy almost Birthday!).
Yesterday Brylee told me she wants her room painted pink and that she wants to plant "Cinderella flowers." WHAT?! Where did "Cinderella flowers" come from? Hahaha I did a lot of flower hunting online with her on my lap looking at pictures. She finally pointed to a picture of a purple hyacinth and said "That's a Cinderella flower!" So this week we will be pulling out one of the bushes by our front door and making a Brylee flower bed. And hopefully we'll get to paint her room this week also. I guess the house work is once again put on hold. But it's totally worth it!