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.

Saturday, April 30, 2011

Starting Over

Abby had her latest scan on Wednesday and on Thursday our doctors called and spoke with Maegan after they all met together to discuss the scan. They told Maegan that the tumor has grown “significantly”, and is no longer isolated to the pons area of the brain. The tumor has started to grow into the other regions of Abby’s brain, which would explain her brain ignoring her left side. So, they took Abby off of the chemo that she was on, since obviously it was not working. Our next plan of attack, which the doctors said was pretty much our last and only option, is to try the two chemos that is designed to block blood flow to the tumor to keep it from growing. They said that they have had good success with this chemo, but that it does take a few weeks to start taking effect. Maegan asked the doctors if this should be a good treatment for Abby, or if we were on our last hope praying for a miracle, and she told Maegan that we are hoping for a miracle. Maegan then asked if we would still be able to take Abby to the beach. The doctor got a little choked up and told us to get her there as soon as we can.

We pulled Mary-Beth outside when we found out and told her what was going on, and told her that we would like for her to spend as much time with Abby as she can and to have those good memories with her, since we don't know how much longer we will have her for. It hurt so much having to tell Mary-Beth that Abby could... not be with us and killed me when she lost it. Emily is still to young to tell, and we told Abby that her tumor has grown some and that is why we are sad. This just hurts so much.

They have Abby started on a high dose of steroids to help, and we are hopefully since Abby responded so well to the steroids initially. If the steroids are not effective, they told us that Abby could possibly lose the control of her right side within a few weeks. Abby will start on her two new chemo's on May 6th, and they are made to stop the blood flow to the tumor. It hopefully won't have too many negative side effects. Abby will get her chemo every other week in St. Louis Children's hospital.

We are planning on going to the Gulf Shores early after Abby gets her first round of chemo. Some good friends of ours are covering the lodging while we are there. We are truly blessed to have such good friends!
Our goal is to live every day to the fullest, and make each day a great one!

Please keep Abby in your prayers, and pray for that miracle that we need. I'll update again soon! Thanks everyone!

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!


Abby is getting an MRI today.  Please keep her and her family in your thoughts and prayers.  Her family will send an update later.

Saturday, April 16, 2011

More headaches

Yesterday, Abby and Maegan, Emily and Sara had to come back up to St Louis Children's Hospital for an unexpected trip. Abby had been having her headaches fairly consistently since Monday, and yesterday after her lunch, she got sick all over the car. Maegan called up to the hospital and they told her to bring Abby in to the Emergency Room. They were worried that the nausea was being caused by the tumor putting pressure on the brain, causing the nausea. So I was stuck at work, and Maegan and the girls were on their way to St Louis. So after work, I picked up Mary-Beth from Amber's house, and we went home. First thing this morning, we packed up and came up here as fast as we could! Abby was going to be released this evening, but shortly after we got up here, she threw up again. So, just to be safe, we decided to have Abby stay in the hospital again tonight just so she can get any help if she needs it. They have her on a pain medicine regiment, rotating Tylenol and Motrin every three hours, and then her big medicine, Oxycontin, for the severe headaches. Since we've been up here, she has had a couple of little headaches, but nothing that has lasted very long or caused much pain. So we are hoping that this trend continues!! Since I'm up here, I talked Maegan into going home with my parents so she can (hopefully) get some rest tonight! She definitely needs the rest, especially since she is home with the girls all day, taking care of all of Sara's needs, Abby's needs, Emily's needs, and Mary-Beth's needs. She is a rock, that is for sure! I put a message up on Facebook asking for some of her friends help for Maegan, with either helping with childcare, or just talking with Maegan so she can get some adult interaction. I'm sure they will take care of her! They always do! Hopefully we can get all of Abby's pain and nausea taken care of and she can get some rest so we can get home tomorrow! Thanks for the prayers!!

Monday, April 11, 2011

Back to the hospital

Getting ready to start week three of Abby's new chemo, and things had been doing good. The main side effects that we had been seeing are photo sensitivity (being very sensitive to sunlight) which would cause headaches. The headaches would not bee too bad initially, but have steadily become worse. Today while we were at therapy, it got so bad that Abby had to lay down and cover her head it hurt so bad. Maegan called up to St. Louis children's hospital and told them, and then they asked to bring Abby up so that they can do a CAT Scan to make sure that the ventricles aren't getting blocked. So we are praying that this is nothing major!

Friday, April 1, 2011

She's in!

Abby is now half-way through her first week of her new chemo! We had a little scare when Maegan initially went up there for Abby's EKG test when they tested her urine and said that she could possibly have a UTI. They said that if she had a UTI, then she would be removed from the trial because you can't start the trial with an infection. So, many prayers later, Abby takes the test again Wednesday morning and has not UTI and started the new medication! It consists of 5 small pills that we will need to handle using gloved hands, since it attacks fast growing cells. Maegan will be able to administer this drug since she is no longer pregnant, but we still need to be careful if she gets sick. They had to do a LOT of blood draws on Wednesday and Thursday, but they made it through! She's such a tough little girl! This morning, Abby got her broviak removed and replaced with a port! She was very happy to get that tube out! She called me when she got out of surgery this morning, but she was still loopy, and I'm sure that she will not remember talking with me. Mary-Beth and I are very excited to have the family back together again tonight!!! Can't wait for 5pm to get her so I can head home!!

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.