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, December 27, 2010

Merry Christmas!

We had a great Christmas and hope that everyone else did as well! Ours started out with an early Christmas present from Abigail. On Dec. 23rd, Abby had her third MRI Scan of her tumor done and we were again very pleased with the results! After the tumor shrunk by around ½ between the first and second scan, it shrunk by around ½ again!! The scan also shows that the tumor is not as dense as it was earlier either. The tumor was not as white as it was in the previous scans, and Dr. Limbrick told us that was because it’s not as thick, which is good.
Before the scan, Abby’s blood counts dropped again. Her ANC counts went down to around 400. Since this is the second time that her ANC has dropped, the protocol for the clinical study states that she can no longer take the chemo again. We asked her doctors what that meant, and they said that a lot of it would depend on how the tumor looks on the scan. They said that if the scan shows that the tumor is shrinking, then they will just “observe” Abby, until any adverse effects start happening. If it were to grow, then they would all get together and have a meeting and figure out the next step.
So, since her tumor has shrunk, they are going to start observing Abby by taking MRI scans every 3 months for a year. After this year, as long as the tumor doesn’t grow and Abby does not start showing her symptoms again, they will do MRI’s every six months for either one year or three years. After the six month scans, then they would go to yearly scans every year for 10 years. After that period, they would do yearly checkups with Abby. So that is the hope and plan for now. If any symptoms start showing and the tumor starts growing, then they said that we would be back at square one and then go from there. So we are hoping that we get many years of good scans in our future!
The girls had a wonderful Christmas! Children’s Hospital had a new group start up this year called Leaps of Love which found a family that “adopted us” and bought presents for the entire family! The family that adopted us got the girls a HUGE doll house that some friends of ours put together while we were in St. Louis so that when we got home, the girls came home to find a huge doll house! They were very happy with that. They were also very happy having had just come from opening Christmas presents at my parents’ house. They got a Nintendo Wii Fit game with all of the Nickelodeon characters doing different exercises. The girls love doing it! The girls, Maegan and I all got some great presents from Grandma and Grandpa Jensen and enjoyed spending time with them!
We then drove home Christmas Eve through the snow which was very pretty, but not fun to drive in! We made it home and after the girls played with the new doll house, we went up to Grandma and Grandpa Miller’s house for Christmas. It was nice because it was the first time that Abby was able to spend time with her cousin’s and Aunt Amber and Uncle Bobby. After a great dinner, we exchanged presents and had a great time hanging out with family! We then came back home just in time to not miss Santa showing up! Christmas morning was a blast watching the girls opening the presents we got them and the i-Carly guitar for Mary-Beth, a pink princess guitar for Abby, and a new baby stroller and Baby Alive for Emily.
It was definitely a great Christmas, and now Abby is anxiously awaiting her birthday tomorrow! My parents will be coming down for the birthday girl and we are just going to have a small party. We then are going to have a bigger birthday party for Abby during the summer where we can have her friends come out and celebrate with us.

Thursday, December 23, 2010

Abby's MRI Results!

Jon or Maegan will post more about this later.  I just had to post this for everyone to see now!

Tuesday, December 21, 2010


On Friday, Abby got her blood work done and her numbers were not good again. Her ANC was at 400 and if it gets under 500 she has to stop taking her chemo until it gets back over 1000. So, they took Abby off of the chemo, and since this is the second time her numbers have dropped, she can't take her chemo anymore. She is still a part of the clinical trial and they will continue to monitor her, but she can't take the chemo. We asked the doctors what the next step is, and they told us that they all will meet on Thursday the 23rd after her scan to discuss Abby and to figure out what the next step will be. They did tell us that the chemo Abby was taking can be available to us commercially (with a prescription of course) but it would be at a lower dosage. So that is not a definite course of action, but we are hoping it is an option. Otherwise, we are waiting for Thursday for the scan to baffle the doctors and are praying for a good result!

Only seven days until Abigail's birthday!!!

Thursday, December 16, 2010

Wish Granted!!

 We found out yesterday from Make-A-Wish yesterday that we will be going to Disney World Jan 9-15!!! We also have dinner reservations at Cinderella's castle after the girls get a Princess makeover before dinner and we'll get to meet all of the princesses! Abby and the girls are all very excited and so am I!

Also, we haven't forgotten, but we are still waiting for the "official" When Abby Smiles foundation to be set up. We are waiting for the attorney to get the tax id number from the State. As soon as we hear about it I will let you know.

Besides that, Abby continues to do well! The girls didn't leave the house today for therapy and blood draw just because our gravel road and driveway were very slick, and I don't think they could have made it off of our road. So better safe than sorry, they hung out at the house.

Saturday, December 11, 2010

One thing after another

Yesterday's doctor appointments went as well as we could have hoped for. We got up to Children's Hospital at 7am for Abby's kidney and bladder ultrasound. Thankfully, they all looked good! They wanted to check them out just to make sure that there weren't any abnormalities on her kidneys that would have caused her urinary tract infection. They also got the preliminary test results back for her UTI which showed that it is GONE only to be replaced with a minor yeast infection. They did not seemed too concerned about that and prescribed a one time oral antibiotic that should beat that.

We then went up to the Oncology department for Abby's check-up. They are all very impressed with Abby's range of motion and her coordination levels! She did her cheers and danced for them and they were all impressed! The only concern that they brought up was about her blood counts going down again. They aren't sure if that is due to the antibiotics or what, but Abby will get her blood drawn twice this week just to check and ensure that they do not get too low. So we are definitely asking for prayers that her blood levels get back up!! Thankfully, she is still feeling and acting fine, so hopefully that keeps up too!

Friday, December 10, 2010

Abby's Check Up

At Children's Hospital for Abby's check-up. They did a kidney scan because of her UTI but she said everything appeared good buddy step is upstairs to the Oncology Lab for her doctor appt. and to pick up her chemo

Sunday, December 5, 2010

Maegan's Birthday

Abby is doing so very well lately. For a while, she would get sick and nauseous in the morning and afternoons. We noticed that it mainly happened on Tuesday, Wednesday and Thursday when she would get her pneumonia prevention medicine. So we started giving her the zofram (anti-nausea medicine) and that seemed to help. Her anti-biotic is the IV type. We had a Home Visit Nurse come by on Monday and show us how to give Abby the iv antibiotic through a pump that she has to get every 8 hours. We figured that the best times are going to be 6am, 2pm and 10pm. Luckily, Abby is a deep sleeper and just sleeps right through it when we come in at nights and during her naps. This weekend, we experimented and didn’t give her the zofram and she did not experience any nausea! Abby’s spirits continue to be high, and she is acting like a four year old again!!! That is very exciting for us. For a while, she did not act like a four year old, and it broke our hearts! It’s good to see her acting like a little girl again!
Some good news is that we heard from the Make-A-Wish people and it looks like the tentative date for Abby’s wish to Disney will be from Jan 9-15!! We are so excited because none of us have been there before, and we just are so excited to see the girls faces light up when we get there and Abby gets her wishes fulfilled! As soon as we know for sure the dates, I will put something up with the plans and itinerary.
We had fun helping Mommy celebrate her 30th birthday on the 1st! The girls all helped in making Mommy’s favorite cake, German Chocolate! They all contributed in the making of the cake and icing of it. The only downside was that we weren’t able to take Maegan out for her birthday dinner. We did get take out from Maegan’s old place of employment, Golden Gate Chinese food. The girls all enjoyed it and we all had full tummy’s!
Tomorrow is Mary-Beth’s Christmas Program at her school. Maegan spoke to the principal about the possibilities of having a little section for Abby to sit so she could and be there to watch Mary-Beth’s program. She really wants to see it and to be a part of the activities outside of the house. I think she is getting cabin fever a bit, I know I would be! The principal said that he will set up a few chairs special for us near the back by the sound system, which will be good seats, but also not near anyone else. We are going to take all necessary precautions-mask, hand sanitizer, sanitizing wipes for the chairs etc- so Abby and all of us can see Mary-Beth’s program and the hard work she has put in.
We continue to get ready for Christmas and we had found out that there is a family from St. Louis that “adopted” our family for Christmas! There is a hospital program called Leaps of Love and this family selected ours to get presents for the family. Maegan and the girls filled out a Christmas wish list and sent it to the hospital. When we go to St. Louis on the 10th, we are going to be able to pick up the presents from this family. We are so grateful to this family and this program! We know that the girls will have a great Christmas, and we won’t have to dip into the benefit money to give it to them!
I’m back to work in the morning, and Abby goes to occupational therapy on Tuesday, blood draw and a urinalysis on Thursday and a trip to St. Louis on Friday.

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.