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, June 24, 2011

Another headache

We had a wonderful visit with my brother Bobby and his family! It went by way to fast though.
The good news is that the shunt that was placed into Abby's brain has significantly decreased the pressure and fluid build up on her brain! On Wednesday, Abby was complaining of headaches and was acting very tired, so Maegan called up to St. Louis Children's Hospital, so we could try to figure out the headaches were due to the shunt possibly having moved or if it was not working. They asked Maegan if she would Abby up so they could do a scan just to make sure the shunt has not moved. They got up there and they took Abby back and did a scan. They said that the fluid levels on Abby's brain looked very good, and that the tumor was probably what was causing the headaches. We just wanted to make sure that if Abby's pain was due to something that we could control, that we got it fixed. We are still working on fixing the tumor, but until then we can only pray.
Maegan and I decided that we are going to move Abby into our bed at nights from now on. This way, IF something should happen during the night, we will be there with her and if she needs to use the bathroom, it is not as hard on my back to pick her up and carry her to and from the bathroom and then hoist her up into her bunk bed again. She enjoys sleeping in our bed, and she is a great snuggle-buddy! We also cleared out a space in our room to put a twin bed for the other girls to stay in our room if they want to, so they do not feel neglected or left out. (Plus, this way, when they all pile up in our bed, I can sneak out to the small bed and not get kicked and laid on!).
Since Abby is in our room a lot now, Maegan and I decided to get a nice television to go back in our room. So, as kind of an anniversary present for Maegan and myself, as well as for the girls, Emily and I went to Best Buy while Maegan and Abby were in St Louis and picked up a 32" television and got a good deal on a blu-ray player with surround sound system included! I got it all set up for when Maegan and Abby got home, and they were all impressed! So was I!!
Yesterday, Maegan and I went out for our 11th wedding anniversary and my parents came down and watched the girls for us while we went to Ray's of Kelso to eat. I had called ahead and had them get a dozen roses for Maegan and have them waiting on our table. We had a good evening, and then came home. We then got the girls all tucked in, and we went to bed. At around 3, I woke up to Emily kicking me in the back, sleeping behind me! So, I moved myself to the couch and finished my sleeping out there.
The girls are all having fun with Maegan's brother, uncle Bryan, who is here with his girlfriend Tonya from Florida! They will be here for a few days, and it is good to see them again! We last saw them when they drove 6hours to the Give Kids The World Village during Abby's Wish Trip.

Tuesday, June 14, 2011

Hydrocephalus and Brain Shunts...

(Note... I'll add pictures later.)

We have been so excited for the arrival of Uncle Bobby and Auntie Colista and our cousins! They arrived to St Louis on Sunday, and Abby was sitting in Grandpa's recliner when they pulled up. She heard them pull up in front of Grandma and Grandpa's house and jumped out of the chair!! I'm glad I was close, or else she would have went splat! I was able to grab her and helped her outside to welcome her cousins! She was so excited to see her cousins, and aunt and uncle!!

Their joyful arrival was sidelined by the return of Abby's headaches and early morning vomiting. We were unsure if it was just a bug or if it was a sign of her tumor. They have told us that the tumor will, as it swells, cause severe headaches, sleepiness, nausea, and irritability. We have noticed Abby getting all of these symptoms. Sunday and Monday, Abby woke up with major headaches, and would throw up. So Monday, Maegan called up to the hospital and told them what was happening, and they had us bring her in for a cat scan. So, while our family went to the zoo and entertained the kids, we went and got a scan in and then waited for the results.

We then got up to the 9th floor and met with Abby's doctors for a little, and they had us go down to the 4th floor and meet with Dr. Limbrick, Abby's neurosurgeon. They did tell us that there was a lot of fluid backed up on Abby's brain, and that the ventricles were congested, not allowing the spinal fluid to flow, which builds up the pressure on her brain. This causes her headaches and vomiting. The technical term hydrocephalus. (I don't know if this is the correct spelling, but it was my best effort!) So they met with us and discussed the options of either putting in a shunt to relieve the pressure and move the fluid through the shunt into her stomach cavity. But since she still gives us glimpses of Abby, and isn't just sleeping ALL the time, we agreed with the doctors that the shunt is worth it for Abby. The other option was to do nothing and just let the fluid build up which would cause her to sleep more, and then when the tumor hits the breathing control of the brain, she would fall asleep and just stop breathing. That was not an option for us!! We know that as the tumor grows, that she will just fall asleep and stop breathing, but we want to enjoy every second that we have with our Abby!! We know that everyday is a gift, and we want to enjoy them to the fullest! We feel that this option will let us enjoy her, and more importantly, that she can enjoy the time that she has left.

So this morning, Maegan, Aunt Colista and I brought Abby up to the hospital to have her surgery. Grandma Mary and Aunt Amber met us up here, and we took Abby in for her surgery. It was hardest on Aunt Colista today, just because she has not seen Abby like this before. I hate to say it, but we have seen and been through this before so we knew what to expect. I know our first time was very rough as well, and I think Aunt Colista held up very well.

They had to shave a section of Abby's hair, on the right side from the temple area all the way around to the neck behind her ear. They left a patch above her ear that we may have to cut, but we'll have to see what Abby wants to do first. So they put the shunt in, and when her hair grows back in, you won't be able to see it at all. It goes from the front of her head into one of the ventricles in her brain to allow the fluid to drain from her brain to her stomach cavity where it will be absorbed by her body. There is a valve on her head that keeps the fluid moving out and not back in.

After her surgery, she was very groggy and not in the best of moods. As time passes, Maegan and I can see progress! Her eyes are clearer and focused and Abby hasn't complained of any headaches! Dr Limbrick came in and said that there was a lot of pressure built up when he put the shunt in, and we should be seeing positive results almost immediately, and we have been!

We will be in the hospital, room 12East12B, and hopefully we will get to go home tomorrow afternoon, or at the latest Thursday. We are hoping for tomorrow so we can hang out with our cousins more before they have to leave!

Abby is doing good and it is good to see her personality and silliness returning! Everyday is a miracle and we definitely thank God for everyday he blesses us with her, and all of our girls!! Even through this entire ordeal, we are extremely blessed!!

Tuesday, June 7, 2011

Every day is a miracle!

Where do I begin?! Abby is continuing to show so much strength and character, she just blows my mind! Over the past few weeks, we have noticed some negative effects from the tumor with Abby. Her walking is almost completely gone now, and even with help walking, she is mostly throwing her legs out in front of her than walking. She has compensated by learning how to scoot herself off of the couch and onto the floor, and then very slowly crawl around to play with her sisters or to just move. Her spirits are still up and she is an inspiration to me!

Last Friday, while Abby was getting her chemo treatment, she was only able to receive one of the medicines because of a high liver enzyme. They told Maegan, that if Abby doesn't feel like making the trip to St. Louis for her chemo, then to keep her home. If she is playing, or anything else and she doesn't want to come up, they said that it was fine to keep her home and to make her happy. It hurt to hear that, and the doctors did say that in no way are they giving up on Abby, and we never will, but we just need to make Abby happy. That is the most important thing.

Before reading the next little bit, please remember that we will fight tooth and nail to help Abby get better and giving up is not in our vocabulary! I'm not trying to be offensive or defensive, but when you keep reading, you'll see why I felt it necessary to put in that disclaimer...

On a sad note, (and yes, I'm tearing up just typing this), Maegan and I have had the discussions on keeping Abby home or at the hospital. We have decided that Abby will be home where she is comfortable until the end. As things get closer, we will move her into our bed (because nothing is more comforting than being in mom and dad's bed!). We'll also move a spare bed into the room for the other girls to sleep on, because we don't want them to feel left out or neglected. We feel that Abby will be the most comfortable at home surrounded in love.

On another sad note, we've also decided that we want Abby and Curtis to be together. Grandma Mary spoke with the funeral home and they said that it is possible to bring Curtis up, and then Abby and Curtis can be together in the same plot. You don't know how hard it is to type this right now, or how hard it was for us to have this conversation.

With all of the sadness out there, let me share some positives! Everyday is a miracle and we are trying to treat them as such! Abby and Mary-Beth are both on t-ball teams, with Mary-Beth being on a coach pitch team. Abby just loves being on the team and smacking the ball! She lets me help by pushing her in her stroller around the bases! She also enjoys being in the field too, and the coaches, players, and parents, all go out of their way to let Abby really be a part of the team! She gets ground balls, catches the ball, and throws the ball! I offer a little assistance, but to see her face beam is awesome! Her next game is this evening at 6pm and she can't wait! When we showed up to the first game, there was a new t-ball bat, glove, and some t-balls waiting for her that a new friend of ours had got for her!

On Memorial Day, we all went to our church's picnic, and Abby was having a blast throwing water balloons and playing with the other kids in the water! The primary children are inspiring to me, as I watched them fill and tie off water balloons for Abby, and then let her throw the balloons at them. It was a really good time for all of us!

A few days later, Maegan was outside with the girls cleaning the silly string off of the deck from their silly string battle (because grandpa Brian and I had spent all morning power washing it) and had a water spraying good time! I looked outside and I see Abby in her stroller with Maegan spraying her down and Abby just laughing and loving every second of it! Those are the types of memories that will last forever!

We are all looking forward to Uncle Bob, Auntie Colista and the cousins coming out next week!! The girls, and all of us, are so excited! It will be a good time for all of us!

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.