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.

Friday, March 25, 2011

Two steps forward, one step back...

The picture on the left is from December 2010 and the one on the right is from March 24, 2011.  You can see that there is more fluid and a little more dense now.  There is one spot towards the back that is completely gone and that is good news.

The scan on the left is her very first scan in August, 2010.  The one on the right is from March 24, 2011.  The tumor is smaller than what it was in August but a little larger than it was in December.

Abby had her latest scan yesterday, and we learned what we had figured, her tumor has grown back, but just slightly. Over the past few weeks, we noticed that Abby has been having left side weakness and her walk has been a little off. So we met with the doctors yesterday morning before the scan, and Dr. Rueben also noticed the left side weakness.

So her tumor has grown, but slightly. We met with Dr. Rueben this morning at 11 and he had several phase I clinical trials that Abby qualified for. Dr. Rueben went over them in detail with us, and some were designed to block blood flow to the tumor and block the growth of blood into the tumor. This could take up to three months to happen and show effects. The other trials were designed to block the enzymes in the brain tumor that tell the tumor to divide and expand, and then turn off the part that tells the tumor to survive. One trial would be done here at St Louis Children's Hospital, and the other could be done at St Jude's in Memphis TN. We felt really good about the trial at Children's and we are deciding to proceed with this trial. The blood flow blocker trial sounds promising, and I hate to even think it, but we don't think that Abby's tumor would wait for the chemo to take hold, so we dismissed that for now. We are excited to start this next "chapter" in this battle against the tumor, but we feel we are one step closer to the ending, which is a happy ending!

We also got clearance from the doctors for Abby to play t-ball this summer, and she is really excited for that. She is also very excited to be enrolled for kindergarten! We told the doctors that since Abby is wanting to play t-ball and be in school, that we were hoping to either remove her broviak tube completely, or to replace it with a port that would be under her skin, but they could access to as needed. They told us today that the port should be no problem, so early next week, she will have her tube removed and replaced with the port! That means Abby will be able to go into the pool for her physical therapy, and that we can get started on plans for a beach trip this summer!! Abby has wanted to go to the beach since she was two, so we are going to make that happen!

So, even though we received some bad news yesterday about the tumor growing, we are not upset or disappointed. We are excited to start this next leg of the marathon, and are relying on the promise that we received that Abby will beat this tumor and grow up to be an old woman. Thanks for all of the prayers and as we find things out next week on all of the details of her new chemo and treatment plan, I will put them up.

Saturday, March 19, 2011

Spring Fever

Sara is a welcomed addition in our household, and Abby and her sisters are such good big sisters! We just have to make sure that they all get equal time holding Sara, or else we hear about it!

Abby is continuing to do very well! She has started physical therapy in the pool, just her legs for now due to her broviak tube, and she loves it! The therapist did point out that Abby seems to be walking with her toes pointing in, and since she has mentioned that, we have noticed it too. She sent home some exercises for Abby to do to strengthen her leg muscles and hopefully that will help. It has not hindered Abby in the least bit, and she and her sisters are a joy to see playing outside, riding their bikes! I'll try to get some pictures of them playing outside, it is just too cute!

Abby had a haircut recently, and it looks amazing! Its now trimmed to her chin, and they cut off the long patch that was at the back of her head. It really looks good and Abby loves it! It makes her hair not look so thin. Abby's new hair is growing in very well! Nice and thick, and growing fast! She is still upset that it's not growing in pink, purple, and curly. I told her that we can get it colored for her if that's what she wants.

This Thursday, on March 24th, Abby goes in for her next MRI scan. We are both excited and scared! We are really hoping that they will be able to remove Abby's broviak tube! Abby wants so badly to take a real bath where she can sit in the water and lay down and play. Plus, Abby has wanted to go to the beach for a while now, so we are hoping that we can get her tube out by this summer and we will find a way to go to the beach somewhere for a vacation. Abby wants to see the ocean and play in the sand, so we are going to make that happen! One way or another!!

We ask everyone to keep Abby in your prayers, so that her tumor will continue to shrink, and NEVER come back! We can feel your prayers and know that they help and the God is listening and answering them. We also want to say Thank You to everyone for all of your love and support! Thank You does not seem strong enough, but please know that we thank God every night in our family prayers for everyone who prays for us and our Abby.

Monday, March 7, 2011

Wednesday, March 2, 2011

Happy Birthday Sara Mae!

{ click to enlarge }

Abby is now a two time big sister, with Sara Mae being born this evening, 3-2-11 at 7:19pm weighing 8.2lbs and 19" long. Mama and Sara are both doing well and the girls are all excited to be big sisters again!

Tuesday, March 1, 2011

Waiting for Sara

Tomorrow is going to be the big day that Sara will join us! Maegan will be induced tomorrow, so we have to be at the hospital at 5am. The girls are all very anxious to get Sara here so they can love her! We are excited too!
Abby continues to amaze me daily with her progress and positive attitude. She is refusing to let her tumor get in her way, and she is my hero! All of the girls are doing so well being supportive of her and helping her, when she lets them. She is real independent and likes to do things herself, but all of her sisters are that way too. Her hair in the back is growing in nicely and real quick! The top is still a little thin, but I'm sure it will start growing back soon as well.
Maegan e-mailed me an article from Stanford University about how they have finally been able to create Abby's tumor into animals. This is the first time in over 30 years that they have been able to do this, and this is a huge step into finding a cure! I started to read the article, but I got through the first few paragraphs and had to stop. Maegan read the article in its entirety and was real positive, but I couldn't do it. The link to the article is:
I want to try and read it, but maybe in the future, just not right now. It just scares me to death and I don't want to think about what "could" happen and what the tumor can do. I am going to focus on the positive and how well Abby is doing and just rely on the promise from Heavenly Father that Abby will beat this. Keep those prayers coming that the tumor will continue to shrink and go away and NEVER come back! Thanks!

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.