Abby's Journey

We'd like to invite you to read Abby's Journey from the beginning. We hope that her story may help a family who is facing the same battle with DIPG. We are praying for a cure and are praying for every child who is diagnosed with cancer.

This is Abby's story.

Wednesday, April 27, 2011

We keep rolling....

I am happy to report that Abby’s headaches have passed, for the most part. Every once and a while, she will tell us that she has a headache, but I think that it is more of her being tired than having a headache.

On the other hand, I am not happy to report that Abby is back in her wheelchair. It is not a full time switch to the chair, but pretty close. Her walking has deteriorated quite a bit to the point that she cannot walk without someone holding her hand and helping her balance. Her left side is noticeably weaker. The doctors tell us that the left side is still strong, but that her brain is not recognizing her left side. If we ask her to grab something or reach for something, she will always go for it with her right hand. If we ask her to use her left hand, she will, but it’s noticeably harder for her to control. When she walks, it looks almost as if her left leg is asleep. She will almost throw her leg out, and then her leg locks out and her knee almost hyper-extends. They have fitted her with a brace for her leg to lock her ankle in place so she can’t lock out her knee. It will probably be here far after her new chair is in, but when she starts walking full time again, she will have that brace to keep her strong.

Abby absolutely loves her pool time physical therapy! It totally wears her out to the point that she can’t walk because she is so tired. The positive part of pool therapy is that she uses her left leg very actively. It has just gotten so hard on Abby to try to walk by herself, and then Maegan has to go out with Abby, who needs at least one hand to hold on to, Emily who wants to hold your hand or be carried, and Sara who is in her car seat. So with Maegan only having two arms, something had to give! So now, Abby will be able to be in her chair, she will put Sara in her chest harness, and Emily will be able to hold her hand, help push Abby, or even sit with Abby, all depending on what Emily wants to do at that time. I am hopeful that in the long run, not only will this be beneficial for Abby, but also Maegan too!

Today, we went to St. Louis for Abby’s evaluation at the Hem-Oc clinic and then go down for her MRI scan since today has been her one month on the new chemo. After meeting with the doctors, they also noticed that Abby has not seemed to make any progress this month, but that she has declined in her abilities. We are expecting that after our team of doctors meets tomorrow afternoon, that they will recommend that Abby gets removed from this trial and they will start to look for something else to try. We made sure that we reminded them that our goal is to help Abby, and so it doesn’t matter if the new treatment option is in Texas, Boston, or anywhere, whatever is the best treatment option for Abby and whatever has the best potential for helping Abby, we will find a way to get her there. The hard part for me personally is knowing that I don’t have enough leave time built up to be able to go with my family and be with Abby full time. I will be there every chance I get, but it won’t be for as long as I want. As long as my little girl gets better, I don’t care what it takes or how much it costs!

We should be hearing from our doctors tomorrow early evening about their recommendations, so we will see what the Lord has in store for us. As soon as we know, I will make a new post!

No comments:

2 Timothy 1:7

For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.