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.

Sunday, October 31, 2010

Happy Halloween!

Happy Halloween everyone!
Yesterday we had a great lazy day! We ended the day by Maegan and me going to Brody’s benefit over at the Bavarian Hall. We left the girls with Grandma and Grandpa Miller while we went to show our support and love to Brody and his family as they go through the same struggles and trials that we go through. We were very happy to see such a fantastic turnout for Brody and hopefully they were able to raise good money to help cover all of the extra costs. We were able to spend some time with some of our friends and it was nice to get out. I tried bidding on a few items but got out-bid quickly, but that’s okay!
Today, we went to church and had a great experience there. As we were coming home from church today, Maegan and I both came to the conclusion that we probably won’t be able to take Abby back for a while based on the amount of coughs, sniffles, and sneezes we heard. So figure that we will rotate weeks going to church and staying home with Abby. We hate not going to church, but the risk of Abby getting sick is too great. She has progressed so far and we do not want to jeopardize Abby’s health.
When we got home, Oak Ridge had a trunk-or-treat set up at the school where a lot of families decorated their vehicles and passed out candy. We all got into our costumes-Emily as Dorothy from the Wizard of Oz, Abby as Snow White, Mary-Beth as a Snow Princess, Maegan as a “Lazy Mom” dressed in her pj’s and slippers, and I threw on my college football jersey- and went for some trick or treating! Emily was unsure about all of the scary costumes, but when she started to see her treat bag fill up with candy, she started to look past the costumes and towards the end was ready with the “trick or treat” and then “Thank you”. All of the girls had such a good time today and were excited to get into their treat bags. 

And ‘This Just In’, the representatives from Make-A-Wish will be out tomorrow afternoon to interview Abby and figure out her wish! We are all excited, and so is Abby! I will make sure that I put an update up tomorrow!

Thursday, October 28, 2010

Second MRI Scan

Today was a day spent at the hospital all day. We started off heading out to the van to go to the hospital, and I noticed that the rear passenger tire was either flat or we had parked in a low spot on the grass. Since it was still dark out, I hoped that it was just a low spot and we pulled off. As soon as we started moving, I knew that we had a flat tire, so we pulled a U-ey and came back to my parents house. We then commandeered my dad's car and we were off again, determined not to have anymore bad news for the day.

Abby also wore her Snow White Halloween costume to the hospital today so she could show it off to everyone. She is super pretty and makes a great Snow White!

We then went to the oncology clinic and met with the doctors who examined Abby and was very impressed with her progress. We told Dr. Rueben that we were looking forward to picking him up off of the floor after Abby's scan. He told us not to expect too much from the MRI because the results do not always show themselves this soon. We again told him we would pick him up off of the floor when he sees her progress. All of the doctors and nurses were also very impressed with Abby's costume and she got a lot of compliments!

We took Abby down for her "sleepy milk" which she was anxiously wanting. She was very brave heading back to her scan but was upset that she had to take her costume off for her scan because the glitter may have interfered with the scan.

When Abby woke up, she was not as grumpy as she was during radiation which was a nice change. We took her up to Dr. Limbrick's office who is our Nuero-Surgeon to have a sneak peak at her scan. We made it up there and I knew it was good news by how Dr. Limbrick was smiling when he called us back to the computers. He then pulled up her prior scan from Aug 6, and then put it side by side to today's scan, and wow what a difference! On the picture, the scan on the right is the old and the one on the left is the new. In the middle, the entire pons section of the brain was a tumor area. On today's scan, there was less than 2/3 of the tumor remaining, and Dr. Limbrick was very impressed that the tumor had went down this much in 2 months! We told him they would be surprised!!

So we are on cloud nine!!! The power of prayer and blessings are working miracles on my precious Abigail and we thank God daily for His hand being on Abby blessing her! We ask for everyone to keep praying for Abby, because even though we cleared a major hurdle, the marathon is not over and we still need prayers!!

I was feeling so good when we got home, I did not mind having to take our rear tires from the van and replacing them and dropping a couple hundred dollars for the tires. I think it was the first time I've smiled when they gave me a large bill, but we were still floating!

Tomorrow, we return up to the clinic for a refill on Abby's medicines and then we will be heading home to be back with Mary-Beth, we always miss her when we have to spend a couple of days away from her.

Sunday, October 24, 2010

Good Times

We have had some really good days! Abby is doing really well and is in great spirits! She is enjoying going to her therapies and spending some time with her sisters. She also enjoys beating her daddy in Wii bowling!

On Friday, we had the concrete poured in the garage and they did a wonderful job even putting a sealer on the concrete to keep any fluids from seeping into the concrete. It took around 5 hours for them to get it in, but it is well worth the wait! The girls are anxious to put their hand prints into the concrete on the apron. We told them that when the apron is put in they could do that then. We are hoping that we can get that in tomorrow afternoon. I will be out there first thing in the morning working on getting it level and at a good five inches with a two inch decline from the garage to the gravel. It’ll be enough to keep me busy in the morning.

Abby is really happy being home and so are we. We are also looking forward to going up to St. Louis on Wednesday evening so that we can get Abby’s scan to see how much the tumor has shrunk! Its one of those emotions where you are excited and scared at the same time! We are excited because of all of the progress that she has made, but nervous because the doctors keep telling us not to expect too much from the scan. We tell them that we will be there to pick them up off of the floor when they see how much progress she has made!!

Wednesday, October 20, 2010

Baby & Flu Shots

Yesterday, we all got to go with Maegan to her doctor’s appointment fur the ultrasound!! The girls and I were pulling for a boy, but we are content with any healthy baby. I was just hoping that Mary-Beth didn’t throw up on me like she did when we found out that Emily was a girl. So we get there and all head back to the ultrasound room and then we found out that we are having a………..Baby Girl!! We figured out the name for her of Sara, but haven’t quite nailed the middle name yet. We then came home and did some work outside and just spent some time together. I am just grateful that we are having good days with Abby and that she is feeling well. We got a small blood pressure reader so that we could monitor Abby’s blood pressure since it has been reading high at the hospital. So far, it has been staying around normal, between 110-119/80-85.
Today, we started the day off with all of us getting flu shots. We put some Lidocaine lotion on Abby’s leg to dull the pain. We figure that she has received enough shots for a long time. She took it pretty well, and Emily cried a little bit. Mary-Beth didn’t even flinch, and Maegan and I didn’t have it too bad either. Abby didn’t like seeing the needle, but I don’t think it hurt.
After that, Abby and I went into town for her speech therapy to work on her “–th” sound. She had a good time and got a lifesaver on top of it. We then went to the Police Station so Abby could say hello to everyone there, and it was nice to see everyone too. After we left the station, I got the girls a treat at the gas station and we came home.
Abby and the girls have been having a great time together and are playing well together. One positive that we have noticed is that this obstacle has brought our family closer together, and the girls are especially a lot closer. It is good to see that happening.
Tomorrow Abby goes in to her physical therapy in the afternoon after getting her blood drawn in the morning. We are just praying that the blood draw goes smooth with no hitches!

Sunday, October 17, 2010

Sunday Sunday

Abby continues to do well! Today, we got up and ready for church, and Abby was initially upset because she “outgrew” one of her favorite dresses. She could get it on but we couldn’t get it zipped up. So Maegan appeased her by telling her that she will go out tomorrow and find her a beautiful fancy church dress. We all had an enjoyable time at church today, and Abby was even content wearing her mask throughout the meetings. We were afraid that she would become self-conscious about it, but she knows that she needs to wear it so that she doesn’t get sick. Maegan also went into her class room and used a disinfecting wipe on her chair just in an attempt to minimize any germs around her.
After church, we went out to Lake Wappapello to visit Maegan’s parents who are out celebrating Grandma Mary’s birthday which is tomorrow. We had a good visit and enjoyed being out in the wilderness and spending some quiet time with Grandma and Grandpa. The drive home was not so quiet! Emily was not wanting to sit in her car seat and decided that her form of protest would be screaming and crying, and the putting her fingers in her mouth as she screams and cries making herself gag. Finally, I pulled over and asked her if she wanted to get out of the car, and she said no and that she would be quiet. She finally did thankfully!
When we got home, we had a message from Dr. Lili wanting us to call her cell phone. Panic set in, but Maegan called her and she just wanted us to keep a daily check on Abby’s blood pressure because it has been high recently. I believe that on Friday it was roughly 130/80 –ish. Dr. Lili just wants us to monitor it and if it is above 120 she wants us to call her and let her know. So everyone please keep her in your prayers that her blood pressure stabilizes and stays good. We know that prayers really help!! We have had many examples of this during this ordeal, the most recent being her blood draw on Thursday. The nurses were not able to draw blood from Abby on Thursday and were afraid that there may be a kink in the tube or a clog. So after making and receiving many prayers, the nurses had no problems drawing her blood on Friday at the hospital. We are huge believers in the power of prayer!! I will let you know how things go throughout the week.

Friday, October 15, 2010

Good Blood

We made it to St. Louis today and they were able to draw Abby's blood without any problems! Her blood work came back and she is doing very well still. The doctors came in an examined Abby and said that she is doing very well and they are very impressed with her progress!

After a couple of hours waiting, we got Abby's medicine and went and picked Emily up from my parents house. Poor girl, she has been running a low temperature since last night. She acts fine throughout the day, but at night, she gets real whiny and clingy. Hopefully it is not anything contagious that can spread to Maegan and I or especially Abby.

On the way home from St. Louis, we got a call from the car shop who told us that the car was done and would be ready for pickup! Luckily it won't break the bank to get it and as long as it is stays a reliable vehicle to get Abby back and forth to St. Louis it'll be worth it!

I also called Tracy Messmer who is doing our concrete work in the garage and hopefully next week the garage will be paved and then I plan on putting in a couple of small rooms in the back of the garage for storage. It will be good to get out and do some hard work.

We plan on having a quite week at home with hopefully NO excitement!

Thursday, October 14, 2010

Van Problems

We noticed yesterday that the transmission on the van was shifting pretty hard. I actually thought that we got rear ended yesterday when we were pulling off from a red light. It kept shifting hard the rest of the way home, and while we were on the way home, Maegan called Pontiac and set up an appointment to have the car checked out today since we need it to go back and forth to St. Louis. So today we came into town to take Abby in to get her blood drawn. While Maegan and Abby were working on getting the blood drawn, I took Mary-Beth and Emily to drop the car off at the dealership. They dropped us back off at the hospital and Maegan tells me that they couldn’t get a blood draw today for some reason. We could flush her tube fine, but for some reason, it didn’t want to get any blood out. They weren’t sure if there was maybe a kink in the tube somewhere or what was going on, so they called up to Children’s Hospital and they figured that since we have to go up there tomorrow they would get the blood drawn.
When we got home, we got a call from the dealership and they told us that they found bad cellanoids in the transmission and bad wiring in the airbag sensors as well. So, the van will be “out of commission” until at least Monday or Tuesday. So tomorrow, we will be borrowing a truck from Maegan’s parents and using that. Hopefully the full extent of the damage won’t be too bad and the van will come back as good as new.
Abby has been feeling well today and we are working hard on keeping it that way. We make Mary-Beth strip at the back door out of her school clothes and then sanitize her hands. When we have visitors over, they get a healthy dose of a Lysol bath. We want to keep Abby away from germs as much as we can while her blood counts are good so that she doesn’t get sick. Unfortunately, Mary-Beth and Emily are trying hard to not let that happen. Last night, Mary-Beth had a small fever and was complaining about her throat hurting, so we took her with us today to the hospital just to make sure that she didn’t have strep throat, which thankfully she doesn’t! Tonight, Emily falls asleep on the couch at 5:30 and then wakes up at 9 with a bit of a fever. A little bit of Tylenol and her flopping around on the couch for a while, and around 10 she went back to her room and fell asleep in her bed with the lights on. Luckily, her fever went down and she is not throwing up (Please don’t throw up Please don’t throw up!!) Now, we just have to keep the germs away from Abby. I have been soaking the house with Lysol in a rotating shift- bedrooms during the day and the living room and the girls toys at night. Hopefully it works and it keeps the bugs away.
On other news, we are one step closer to officially having the “When Abby Smiles” Foundation set up. Maegan spoke with our attorney who said that all of the paperwork has been sent to the state for approval, so hopefully we can get that all set up soon. I will keep everyone updated on the progress with that and when it is fully set up.
Tomorrow will be a busy day with us running to St. Louis Children’s Hospital so Abby can get her exam by her doctors there and they will also do a blood draw. They have to have the blood counts before they fill her chemo, so unfortunately it will draw out our stay there tomorrow, but it gets her the needed medication, so we will do it. After that, we will come back and hopefully be back in town to pick Mary-Beth up from school, but more than likely we won’t be able to so Maegan’s mom will get her from school and let her play at the house until we get home. Thanks Grandma!

Wednesday, October 13, 2010

Speech Therapy

Thank goodness for good days!! We are so blessed that Abby is doing as well as she is doing. We can only pray that she continues!
The past few days have both been very good. Abby has been acting and feeling good and hopefully the stomach problems are behind us. She cracked me up on Monday when her stomach was hurting. She was sitting on the couch crying telling us that her stomach was hurting, and then a few minutes later she walks into the kitchen where I am, releases a huge burp, and then starts laughing and says “That feels much better!”. I imagine that if I had a big gas bubble like that stuck in me it would hurt too, but when she started laughing after belching, it just raised our spirits!
Today, Abby met with her speech therapist for the first time and had a very good evaluation. She told us that she tested Abby up to a six year old, and she only missed three questions! Such a bright little girl! She does have problems enunciating the “-th” sound. So, weekly meetings and the therapist says that she should be able to fix the speech problems, but said that her speech and memory are very good.
Tomorrow morning, we meet with Dr. Dodson to have Abby’s blood drawn and her weekly evaluation done. Next week, on the 28th, we go back up to Children’s Hospital for Abby’s next MRI scan and then a meeting with all of her doctors on the 29th. We are looking forward to seeing how the doctors react to how well Abby is doing and seeing how the tumor is shrinking away!

Sunday, October 10, 2010

Sick Day

Abby had a rough day today. She woke up this morning and said that her stomach was hurting because she was hungry, so Maegan got her some Frosted Flakes to eat. She ate the cereal, and then said that her stomach was really hurting. We thought that she was constipated because she hadn’t “taken care of business” since yesterday morning. So I take her into the bathroom, and as she starts to sit down, she starts dry heaving. I grab the trashcan and give it to her in case she needs to throw up. I ran to the kitchen and got a large pitcher and brought that to her just in time for the Frosted Flakes to return. All she wanted this morning was her Grandpa Miller, so he came down and was there when she got sick, and she then came out and snuggled in with him for a while until they both started falling asleep. Grandpa had worked all night so he went home to bed, Maegan and Mary-Beth and Emily got dressed and ready for Church and Abby and I went in and laid down in the bed so she could rest. She didn’t sleep, but she was able to relax for a while. She got up right after the girls left and threw up a little bit more. By this time, she was ready to get out of bed, so she laid down on the couch and we watched football for a while and she napped on and off. At 11:30, she threw up again nothing but stomach acid. She was able to rest then, and started to feel a little better. She tried to play Dora on the Wii, but that only lasted around 5 minutes before the movement started to upset her stomach again.
We are just wondering if her stomach problems are due to the chemo or if it was just a stomach bug. I am leaning towards a stomach bug because after resting, she seemed to get better and by the time she went to bed this evening she was doing pretty well. Before Maegan and the girls got home from Church and then Cousin Carson’s first birthday party, I gave Abby three crackers to see how she would do with them. She got them down as well with some juice and didn’t have any problems. She said that her tummy hurt some but then felt better as well. When Maegan got home, the little girls at some chicken noodle soup and Abby had a small bowl. She ate the entire bowl and did really well with that. She seemed to be doing really well and was able to keep her medicine down as well. I had her stay up for a little while just to make sure that she did not throw up her medicine. She did alright and so we took them and they passed out in bed. Being the worrier that I am, I turned the baby monitor on very loud so that we can hear in the living room if she gets sick or calls out for us. I just hate seeing her sick and hope that she has a better day tomorrow.
We are thankful that yesterday she had a good day. Jackson Chiropractic held a joint benefit for Abby and Brody. We went over there in the afternoon and had a great time. We were able to meet Brody for the first time and we were excited to meet Brody and his brother and sister. They are a really strong family and we hate that they are in this same boat that we are in. At the same time, it is good to have another family that we can talk to who really understands what we are going through and we know what they are going through. It is one of those things where you hate it that there is another family going through this ordeal and trial, but it is good to have someone to talk to who really understands.
The past few days, both Maegan and I have been struggling with the realization that Abby really is sick. Friday night, I was awake from 1:30 until the girls woke up around 6:30. Every time I closed my eyes, my mind would just play tricks on me. I would just start picturing the worst case scenario and then start kicking myself because we have been told in Abby’s blessing that she would beat this. My spiritual side was battling with my physical mind, and I had to continue to fight to keep my spirits up. Overall, I know it is just a step we have to go through to get Abby better. We just have to fight to keep our spirits up and to be strong for Abby. She has been so strong throughout this ordeal and has not complained once or asked “why me”. If she can be so strong, we also need to be strong. We can and will do it!

Please Pray for Abby

Abby is pretty sick today. She has been throwing up all morning. Please keep her in your prayers.

Tuesday, October 5, 2010

Home at last!

Abby is enjoying being back home, as we all are. It was refreshing to all of us! We really enjoyed being with my parents, but there is just something about being home. We are now working on getting back into our routines and schedules, which, for Abigail, includes starting physical and occupational therapy with speech therapy starting next Tuesday. Abby is enjoying being back in her bed. We have set the baby monitor up in her and Mary-Beth’s room since Abby is on the top bunk and the ladder is still a challenge. Over the weekend, on Saturday, Abby began her maintenance chemo which is 230mg, or 4.6mL. This amount has been shown effective and well tolerated, so hopefully Abby continues to handle it well and it does not impact her negatively.
On Monday, Abby had her evaluation with her physical therapist at Southeast Hospital Health Point. Abby really enjoyed playing the games and being active, and Emily did all of the exercises with them and they all had a blast. The therapist said that Abby is doing really well with her movements and coordination, but that she needs to increase her strength to her quads and bottom muscles. We all figured that after several weeks of not being able to walk that her legs would be fairly weak. While we were finishing up her physical therapy, we noticed that there was a Nintendo Wii set up, and I asked if getting a Wii would be beneficial for Abby, and she said that there are several games for the Wii that go with the Wii Fit that would strengthen her core muscles as well as increasing her coordination. So I was sold!
Abby will be scheduled for her physical therapy treatments once a week and she is already looking forward to going back. Tomorrow is Abby’s first occupational therapy and she is very excited to go! We are glad that she enjoys going because it makes it so much easier!
Today, Abby escorted me to my doctor’s appointment where I knew that Dr. Crist and the awesome nurses there were very excited to see Abby. Since it is a doctor’s office and sick people go there (obviously), we got a mask for Abby to wear just to be safe. Abby definitely was happy to be there with me and everyone was happy at how well Abby is doing and how she keeps her positive attitude.

From there, we went to Best Buy where we found a new Nintendo Wii as well as the Nintendo Fit. I then looked through the games and found a couple that use the Fit balance pad to control everything and picked it up. Abby also got a Dora and the Ice Princess game and I got Maegan a Mario Brothers game.
When we got home, we got the Wii set up and I made the “Mii” characters for everyone. Maegan then went to get Mary-Beth from school and then we all started to play. Needless to say, it is a hit! We definitely need to get at least one more control, and possible 2 or 3! If it keeps Abby up and moving rather than just sitting down, I am for it! Plus, it comes with several other games and the Fit comes with several workout games that we haven’t tried yet. I think it is going to be worth the investment!
We got our new computer in and it took a couple of days to get things set up and to find how to get our dial up internet connection set up. Hopefully, there is rumor that we will be available for some hi speed internet in the near future! That will be awesome if it happens! We got spoiled at my parent's house with the hi speed Wi-Fi connections.
Tomorrow we are looking forward to another good day and I will hopefully get the garage cleaned out the rest of the way so that we can get the concrete guys out and hopefully get the concrete poured before much longer. It will make things so much easier when that is in and then it will open up the room for me to put up some walls and make a storage area which is much needed! The way things are now, if we store clothes or the like in the garage, the moisture comes in through the floor and starts molding things. So I am planning on possibly putting up two rooms in the garage to be used for food storage and then storage. We will see what happens and how my carpentry skills hold out.
Thanks again to everyone for the prayers for my little girl and our family!! They do help and we are thankful for all of them! Please keep them coming so that Abby can continue to do well on her higher dose of chemo for this next year.

Monday, October 4, 2010

First Therapy Session

We are at Abby's first therapy session and she is having a blast, plus she's doing a great job! We got the new laptop but still have the slow dial up. I will do a thorough update tonight.

Saturday, October 2, 2010


Abby had a great time today at her party! She also had fun shooting me with a paintball gun!

Friday, October 1, 2010

She Did It!

She did it!! 
She rang the bell and has cleared the first big hurdle!! I am such a proud Papa right now!

More pictures and hopefully a video of Abby will be posted later.  Make sure you stop by again to see the happy moment!

Ring That Bell!

Today is the day that Abby gets to ring that bell!  

Abby, ring it so hard that your family on the west side of the country can hear it!  All our aunts, uncles, and cousins love you and wish we could be there when you ring the bell. Mary-Beth and Emily, we miss you and wish we could be there with you too.


the Nevada & Utah Jensens

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.