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.

Monday, November 29, 2010


The other day Maegan had taken Abby in for her blood work and they took another urine sample to see how the UTI was doing. Friday, Maegan got a call from St. Francis saying that Abby has a anti-biotic resistant form of a bacteria in her urine, and the only thing they can treat it with is an IV anti-biotic. The Home Health Nurses should be able to do that here at the house so we hopefully wont have to go to St. Louis for treatments again. Fingers crossed! We should find out more details sometime this afternoon, so I will try to put an update up when we hear something!

Thursday, November 25, 2010


Happy Thanksgiving Everyone!!!

Sorry about the delay in keeping up with the blog. To get everyone caught up-
Last week we had a big scare! It was a Thursday morning and Maegan had taken Abby to St. Francis for her blood work. For a while, Abby had been getting nauseous especially in the mornings. Abby is continuing to fight her urinary tract infection and they started her on a strong antibiotic for it. We think it was the antibiotic was hurting her tummy looking back. Maegan gave Abby her antibiotic right before they left the house. So Maegan pulls up to the hospital, and as soon as she gets to the doors, Abby throws up all over the back seat, and Maegan said it was a lot! Luckily, one of the nurses from Dr. Dodson’s office was walking in and was able to help out since Maegan cannot get close to Abby’s vomit because of the chemo. When they got upstairs, they took Abby’s blood and it did not come back good. If I remember correctly, Abby’s platelets were down to 39, her white blood cells were around 0.89.

All of this happened while I’m at work, and Maegan had her dad take the girls home so she could take her three hour gestational diabetes test. Maegan gets a phone call from Children’s hospital saying that Abby needs to get a platelet infusion that day, and to have her up there before 4pm. Maegan calls me, obviously upset and tells me about the blood work and the upcoming infusion. So I start stressing out trying to figure out how I can get off work to take them to the hospital and how I was going to get my hours in at work and worrying about Abby! Maegan calls me a little bit later and tells me to stay at work and that her dad will drive her and the girls up there, and that my dad will pick up and watch Emily. It all worked out well, because this way, my parents have Emily, Maegan and the doctors will take care of Abby, and I will be able to watch Mary-Beth when I get off of work with Maegan’s parents watching Mary-Beth until I get home. We are still stressed out just because of the situation with Abby. I still go up and talk to a few people about the possibility of borrowing sick hours if needed. Unfortunately, since I used my 12 weeks of FMLA leave, I’m not even eligible to borrow time. So I had no choice besides not getting paid and the possibility of losing my benefits or working.

Abby makes it up to the hospital and they get checked in and they start her on an IV as well as an IV antibiotic. Around midnight, they get Abby her platelet infusion and then they check her blood again around 3am. They told us that until her blood work gets back up to a certain number, they don’t want her on her chemo anymore either. In the morning, they gave Maegan the news that Abby’s blood work is already getting better, and they are expecting her to be released that day, Friday. The new antibiotic did not seem to be bothering her stomach, so they said that as long as she keeps doing well with that, she can be released. Thankfully, her blood work stays good, and she keeps the antibiotic down, and Maegan gets to come home. My dad brought the girls home for us and they had a good time with grandpa.

Maegan and I had already had plans to go to Nashville and watch a Titans football game thanks to my buddy Eugene Amano. He is the starting center for the Titans and was able to get us free tickets. Since Abby was feeling fine, my parents took the girls for the weekend, and Maegan and I were able to get a good weekend in down in Nashville. It was very pretty and the weather could not have been better! We walked through downtown Nashville and stayed at a nice hotel. The next morning, we went to watch my buddy play and had a great time there! It was Maegan’s first NFL game, and my second. The only thing that would have made things better would be if we could have met up with Eugene, but we understand that he has a busy schedule. Maybe we can do it again some other time.

Since then, Abby has been doing well. They took her blood again on Monday and her counts continued to improve! So we now were able to give Abby her chemo again, but they wanted us to modify it a bit. Rather than giving her the chemo seven days a week, they only want her to have it Monday through Friday, with the weekends off. We think that will be good letting her body get a bit of a rest.

We had a great Turkey day today with plenty to be thankful for! We have had our ups and downs, but all of the blessings and friendships that have been built and strengthened have been amazing. Even through the hard times, there have been things to be thankful for. We’re thankful that Sara is getting ready to join our family and that because we are having her, Abby and the girls have insurance! We found out that just the week we spent in the hospital would have cost us over $175,000!!! That’s not counting the 30 days of radiation and the continuing blood work and medication. I could write a novel on all of our blessings, but for the short version, I am grateful for my family and for our parents! Our parents have been so beneficial for us so we could focus on Abby and our emotions without having to wrestle with everyone. I am thankful for all of our friends who have done so much for us and our family! I am thankful for my job which I love. Having a job and bosses who were there for us and able to help out with my scheduling and being able to move me to traffic so that I can be home at nights to get Abby her medicine has been a big relief. I am thankful that God still loves us and has not forgotten us! I am thankful for His healing power that he is providing to Abby. We are thankful!

I will try to be better about putting info up her for everyone. Maegan is getting ready to go out and brave the stores for black Friday while my parents keep the girls at the hotel. In the morning, I am going to St. Louis to pick up Abby’s medicine and then coming home to get ready for work. We hope that everyone had/has a great Thanksgiving!

Tuesday, November 16, 2010

Ups and Downs

The past few days have been a bit of an obstacle around here. Abby seems to be getting sick at least weekly, and we are hoping that it is not going to turn into a habit! This week her vomiting decided to come early on Sunday night. Abby took a shower and was telling Maegan that her stomach was upset a little bit. I gave her some of her nausea medicine and we put the girls to bed. Just to be safe, we gave Abby a large pitcher to keep with her just in case, and I’m glad we did! A couple of minutes after we walk out of her room, we hear her calling for us and then she returned her dinner to us, luckily into the pitcher! Just to be safe, we put her in bed with us on my side with me in between Abby and Maegan just in case she got sick, it wouldn’t get on Maegan. Luckily for us, she didn’t!
The next morning, Abby gets out of bed and around ten minutes later, she starts running to the kitchen saying “where’s my bowl where’s my bowl!” I run in there after her and tell her to go to the trash can, and she does. Since there was nothing on her stomach, it was just stomach acid. After that she relaxed on the couch and said that she was feeling better. A short time later she said that she was hungry, so I got her some carrots with ranch. The two carrots she ate lasted maybe five minutes before they made the quick return into the trash can. Poor thing!
We were getting worried, so we called up to St. Louis Children’s Hospital to talk to her oncologist just to make sure we shouldn’t be worried and if this was a sign of something big. They called back and told us as long as she is still reaching for things and not getting clumsy again, it shouldn’t be anything to worry about. A short time later, Dr. Leli called and said that Abby has a urinary tract infection which was why it was hurting her to go to the bathroom. Dr. Dodson told us that the UTI could be why Abby was getting nauseous. So we got Abby started on her anti-biotics last night and she does not like them! Thanks to everyone for the prayers, because we know they help! It was shortly after I put the request up that she stopped getting sick and her stomach settled down, so thank you!!
On other news, Maegan had to take her gestational diabetes test yesterday at her OB-GYN. She hates that orange drink! Today, Maegan received a call saying that her number was pretty high. I believe the cut off number is 139 and Maegan’s blood sugar was around 170. So Maegan will have to go and take the 3 hour test sometime soon, so keep her in your prayers too!
Today we also were able to get rid of our leaking refrigerator and got the new fridge delivered. Hopefully the water that leaked didn’t damage the floor, because I would hate to have the fridge fall through the floor!!
Maegan also advised me today that we have been “adopted” by a family for Christmas! That means that we can get the girls their presents without having to use any benefit money to have our Christmas! I’m not sure who the family is that “adopted” us, but I am always blown away by the generosity and love that people are showing my girls. It is definitely humbling and we are so grateful!
Today, Abby and the girls have been feeling good which is a blessing! We are taking it day by day and every night we say our prayers that Abby continues to get better and that we all stay healthy. I’ve never used so much hand sanitizer or washed my hands so much, but it is for a great cause!

Monday, November 15, 2010

Abby's still sick

Abby has been throwing up since last night. She'll feel fine until she eats then will get sick. Please keep her in your prayers that she will feel better!

Sunday, November 14, 2010

Abby's Blood Count

Maegan explains Abby's blood work!!

Jon has asked me to update and educate those who don’t understand all the aspects of Abby’s blood work. I will do my best and hopefully give the right information and not confuse you. Every Thursday Abby has her blood drawn and tested to see where her levels are. The things tested that I know most about are her white blood cells (WBC), red blood cells, platelets, neutrophils, and ANC. She is tested for many more things but these are the things we need to focus on for the present time. Now, let me explain some of these to you and give you some of the counts. The numbers given to me by the doctors are in whole numbers so a count of 406 is actually 406,000.
Her white blood cells are infection fighters in her body. As this level decreases her immune system also goes down and it’s easier and more likely for her to get sick. If they start going up it’s a possible sign that she is getting an infection. On her first blood draw, Aug 19, 2010, her WBC were 13.8. About a month later on Sept 23, 2010, her WBC was 6.5. On Oct 15, 2010, the count was 3.6. Her most recent blood test on Nov 11, 2010, showed a count of 1.5.
Her neutrophils are the big leaders in her white blood cells to fight an infection. Aug 19th the count was 72, Sept 23rd the count was 71, Oct 15th it was 67, and on Nov 11th I think it was 52.
If you take her WBC and her neutrophils and do some math equation you get her ANC or average neutrophil count. On Aug 19th this was 9,936. On Sept 23rd it was 4,615. Oct 15th it was 2,412 and on Nov 11th it was 840. We just found out that if her ANC gets below 500 than we will have to take her off the chemo until that ANC gets back to at least 1,000. If she continues to take her chemo and be below 500 it could turn her body toxic and we really don’t want that. If she has to go off the chemo her blood will be tested 2 times a week until her body can replenish itself.
Platelets are what help your blood to clot. This is what her chemo drug affects more than anything as far as blood goes. On Aug 19th her level was 426, Sept 23rd was 227, Oct 15th was 169, and Nov 11th was 70. If her platelets get down to like 10 then a platelets infusion will be given. If her count gets below 50 however she will have to stop the chemo until the level is back up to 100. The same protocol for blood work as the ANC will be done in this case.
Right now we are most concerned for her platelet and ANC counts to stay above those levels. If she comes off the chemo because these levels get too low she will get back on the chemo as soon as the levels get back to where they want them to be. As you can see her WBC is going down and so we have taken extra precautions to try and keep Abby has healthy as possible. She’s been very understanding about not getting to go to Wal-Mart and not going to church. It makes it a little harder to keep her healthy with the cold and flu season creeping. I don’t want her to live in a bubble but also don’t want to see her back at the hospital for an illness we could’ve avoided. It’s a fine line, I’m learning. Even with her blood levels dropping she is still a very active little girl and it hasn’t gotten her down. We are happy to see the weight decreasing since she has been off her steroids. Still a lot more progress to be made until she’s back where she was when all this started. We don’t mind though, I love to kiss those cheeks!
Hopefully I didn’t confuse you and now maybe you will know more specifically what to pray about for our Abby. We deeply appreciate all the prayers and still need them as she continues to kick butt!! We love each of you and pray for you as well. Good night to all!

Sunday, November 7, 2010

Back to Work

Sorry for the lack of posts recently… Since I have to return to work tomorrow morning, I have been trying to get a lot of tasks completed around the house that I had set out for myself. Using Grandpa Miller, we finished an 8x10 storage room in the garage. Abby wanted to come out with us at times, but with it being fairly chilly out the past week, we thought that it would be best for her to spend most of the time inside.
Thursday, Abby went with Maegan to see Dr. Dodson for her blood draw and a checkup and things went well. Luckily, the nurses at St. Francis talked with the nurses from Children’s Hospital and the blood draws have been much easier. They called a little later with Abby’s blood results, and Maegan tells me that they have dropped, but they are not in the “worry” area. I am going to have Maegan put a post-up that explains the blood work and what the doctors are looking for and what the numbers mean. She had Dr. Wong explain it to her in the beginning and I was wrestling with Emily, so I only caught a portion of the explanation. I believe Maegan will put something together tomorrow and we will post it then. But, for now… Abby’s blood counts are still okay, but they have dropped since last week. Luckily, we have not and hopefully will not need any transfusions or anything else, so keep the prayers coming!
Tomorrow, Maegan gets to wrestle with girls while taking Abby to her Speech therapy at 2pm. Luckily, Maegan’s parents will be able to pick up Mary-Beth from school. With my schedule the way we have it set up, I will be able to drop Mary-Beth off at school in the morning and then head into work. I’m going to feel it out tomorrow and see how much time I actually have to see if maybe I can get into the gym before I start work at 9am. The way my schedule will play out, I will be on a 6 days on, 2 off, then 4 on, 2 off. The technical problem we came across was the fact that every other Friday we have to go to St. Louis for an evaluation/pick up meds, and I HAVE to be there to get the medications. So, what we have figured out is that on Friday and Saturday, I will work a night shift, going in around 8pm till around 4am. This will help the platoons working the streets by having a traffic car to work any accidents and to also hunt for and assist on DWI enforcement. We will see how this schedule works, and if it needs to be tweaked, my bosses have said that they will work with me to get it so it works. Another problem my schedule will cover this way is the fact that the way it is set up now, I will be able to be home by around 7pm to get Abby her chemo. I thank God that my work is being as helpful as they can be during this time.
We have noticed that Abby’s appetite has dropped dramatically since being off of the chemo. Before, she would be a bottomless pit, whereas now, she will eat a small portion then say she’s full. She eats maybe four or five real small meals, but they told us that as long as she is eating at least 3 times a day, then we shouldn’t be worried. Her tastes are starting to change recently. Some food that she used to love she doesn’t like anymore. A big one is we would always get honey wheat bread for the girls, but now she will not eat it. She doesn’t like pizza rolls anymore, and applesauce. She is starting to slowly slim down some to her normal self again. It will take some time, but she is making great strides. Her energy level is getting better and so is her balance. Overall, we are still very happy with all of the improvements Abby makes and we still know that she will “kick this tumor’s butt!”

Tuesday, November 2, 2010

Make A Wish Interview

Yesterday, we got some great news and then some not so good news…

Good news was that the Make A Wish people came by and interviewed Abby to find out what her wish is. She had a great time explaining what she wanted to them. She said that she wanted to be kissed by a real prince, to stay in a real princess castle, have a real princess dress, tiara, shoes, and to also meet all of the princesses. Nothing is definite at this point, but the volunteers said that it sounds like a Disney trip would be perfect for her, and we said that we agree! They asked us for a tentative date for going on the trip, and Maegan gave them the possible dates of the first, third or fourth week of January. So we will see how that works out, but we are really excited for Abby!

The not-so-good news we got yesterday…
I got a call from the Assistant Chief at work who asked if I could come in a meet with him. So I went into the station and met with him. He explained to me that they were informed that through FMLA, I am only allowed to take off 12 weeks in a 12month period, and my 12 weeks expired on 10-27. I had just enough hours where I can finish this week but have to start back to work on Monday. They are still being very good to me there and are working with me on my schedule to ensure that I can be home every night by 7 so I can get Abby her medicine. Then with the Friday’s where we have to go to St. Louis to refill Abby’s medicine, I am going to work an evening shift so that we can get Abby’s medicine and I can also get my necessary hours at work. Our big concern is mainly with Maegan getting out and shopping etc. We are not really taking Abby out anymore just to keep her away from any sick germs, and so this will just make it a little harder to do that and will take a little more planning with family and friends. It will all work out for the best, just a minor obstacle in the marathon of getting Abby better. We just hope that Abby continues to stay healthy and illness free. Keep her in your prayers please and thank you very much for all of the prayers sent up for her and 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.