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.

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!


timdanakaden said...

You are the most amazing family I know. You are so strong and just amazing. I pray that I will have at least half the faith, strength, and courage you have. We love you guys so much and pray everyday for you. If you ever need anything please let us know.

Sara said...

I found out about Abby from my friend and coworker, Bobbi Minton. I am keeping all you in my prayers!! Your Abby is a real inspriation to all whether they have met her or not.

Sending prayers and lots of love and hugs,


Sue said...

Hello, I found out about Abby through Bobbi and Bryan Minton. My heart and prayers go out to all of you as I have lost 2 children and a nephew. Long story but to shorten it, my son Jason passed when he was an infant during the time they told me my son David had a terminal cancer and he wouldn't live to be 3 and he was 2 1/2. He ended up going to St. Jude Childrens Research Hospital in Memphis, TN. We only had time for grave side services for Jason as we had to have David in Memphis...multiple times they told me to prepare cause he was at his end, but we kept on trying...he beat his cancer, but the type of chemo he had to have had bad side effects...congestive heart failure. In the mean time my nephew at age 8 passed away from brain cancer...His mother (Becky) and I have been close for many years so I was close to Devin as well. Back to David, he had a heart transplant when he was 16 at St. Louis Childrens Hosp. He was in the hosp for 3 months for that...David had alot of complications and was in alot of pain for several years...his heart lasted 12 years, he decided to quit his anti rejections meds...he talked to me and told me he was wore out...he couldn't take anymore. He was 28 at that time. I told him it wouldn't be easy for me, but it was him that it was all about so if that is what he decided then I would stand behind him...crying as I am sharing this and as I said this is short version with alot left out....that night some of his friends came over as everyone but me seen he was dieing and word got out if ya wanna see him again better go over. When his friends came over I moved my air mattress into the other room... as I told him I would start sleeping by him... so there would be room for his friends to visit. They walked outside to smoke a cigarette and he asked me if I would take him to the bathroom while they were out as he was to weak at this point to do anything, so of course I did. While we were in the bathroom and I was trying to hold him up and get him ready to sit on toilet he started jerking so I hurried to sit him scared I was going to drop him....his lungs filled with fluid, he yelled MOM...I looked at his face cause I didn't know what was going on, his eyes as big as half dollars, trying to get air and couldn't with his heart still beating and then his head dropped and he was gone! He died in my arms, hard for me but comforting for husband, Roger, carried him to the couch as I called the funeral director, they gave us time for all family and friends to come over before they came to get him. He was born into this world with me of course and he left this world with me...comfort for him which is all that is important. Very hard to watch your child go through all, but being home with your loved ones makes the passing much easier for your child! Don't give up, but I think home is a good decision for her. But will be hard on you parents! I wouldn't change our decision knowing the feelings that the parents and other siblings have after your loved one is gone. He no longer is in pain, no more needles, surgery, pills, etc.... Heaven is his home now, although I do wish he was here and it hurts terribly.HE is at peace! Something he never knew.... With much love and prayers for Abby and her family, Sue Pyron RIP David Alan Goeke - Nov.28,1980-Aug.20,2009.

Jessica said...

Hi Jon and family. I'm just now getting a chance to read your update. Wanted you to know that I am praying for your family.

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.