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

Chemo

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.

Monday, November 29, 2010

UTI

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

Thanksgiving!

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!

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

Paintball!

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.


Love,

the Nevada & Utah Jensens

Thursday, September 30, 2010

Clearing a Hurdle

We are all really excited about tomorrow, Abby's last day of her radiation! Mrs. Stephani who works the front desk, said that they are all very excited about Abby finishing up as well. She and the staff are going to bring in some cookies and are all going to be wearing pink shirts and tiara's. The pink shirts are for breast cancer awareness month, but for tomorrow they will be for Abby's big day! She also said that they always make a big deal anytime that a child finishes up with their radiation. We are excited as well to have a lot of family and friends coming to watch Abby ring the bell. I plan on having the camcorder with us tomorrow so that we can get this momentous occasion recorded. I will try to upload it soon after so everyone can see the big event.

On Saturday, we also have a big day of fun and celebrations. We are going to start off at the Heroes vs. Future Leaders Softball Tournament that will be held all day at the Shawnee Sports Complex, and then from there we are going to Oran for Abby's Benefit being put on by my buddy, Damon Shy, at his training and paintball facility, Cerberus Training Options. Abby has already told me that she is going to shoot me with a paintball gun. And I think I may have talked Maegan into putting a pillow under her shirt and playing a round of paintball as well! That will be fun! Hopefully everyone will come out and have some fun with us there! For more information on directions or activities, you can go to his website.  It should be a good weekend and I look forward to making the next post from the house!

Tuesday, September 28, 2010

Flashes of Hope




After Abby's treatment today Flashes of Hope showed up at the Oncology lab and took some wonderful photographs of Abby for free. It was sponsored by the St. Louis Blues, how cool is that! Abby really enjoyed herself and had a blast letting the ladies put the make-up on her and getting her all fancied up for her pictures. The photographer really helped Abby and she took some awesome pictures, and even let Maegan and I take a couple of pictures with her. They said that all of the pictures should be delivered to the Oncology lab in around 4-6 weeks. The Blues got it so that all of the kids will get a nice full sized photo package. Abby is really looking forward to getting the pictures back and so are we.

Only three more treatments. We are so ready for this step of the process to be over with and behind her, and ready to tackle the next step. Hopefully Abby will continue to do well. She continues to amaze me with all that she does and her positive attitude. Thanks to everyone for all of the prayers and keep them coming!

Monday, September 27, 2010

New Mask

Abby ended up having a new mask being made on Friday, but they did not use it this morning for her treatment. Dr. Mansur said that he was happy that they did not use it or have to use it because they would then have to run an entire new simulation which would push her treatments back, and we do not want that! There are only four more radiation treatments left, and then we will immediately go into her year long maintenance program. The doctors from her clinical trial said that the day after last radiation, she will start her chemo treatments which will be 12 cycles of 28 days straight. After the 28 days they will do the next scan. We will have to come up every two weeks to meet with the doctors and also to refill her chemo medicines. We will be able to get her blood drawn at home and we will probably do that on Wednesday or Thursday so that they can get the blood up to Children's Hospital so that they can get the work done, which will make our bi-weekly trips a little easier.

Abby continues to amaze us with her progress and joyful spirit! We noticed today that her cheeks are not as hard as they have been, which is nice! It was good being able to squeeze her cheeks again and having some give in the cheeks, and not being rock hard. So we are definitely hopeful that now that the steroids are being slowly weened down, that her cheeks will return to normal and she will not be as puffy as she is now.

Today, Mary-Beth was up here with us and was able to go up to the Siteman Cancer Clinic to see for herself what Abby was going through. She came to the back with us and saw them give her the "sleepy milk". We then went out and watched all of the techs on the monitors as they got Abby into position and put the mask on. Mary-Beth told us as we were walking back to the waiting room that she didn't realize how much Abby went through each morning. When Abby woke up from her anesthesia as her normal "bear" self, Mary-Beth got to see that as well. Maegan had told her before we went back there that if it bothered her to see Abby like that, she could go back to the lobby with Ms. Stephani (who is our new friend who works the reception desk) and she would watch her until Abby was ready to go. Mary-Beth held in there for a little while and tried to help by holding Abby's hand, but after a few minutes, told Maegan that she was going to go back to the lobby.

We told Mary-Beth that when Maegan and I took Abby back for her first treatment, it bothered us quite a bit and that we cried in the waiting room, so that it was okay for it to hurt. She seemed to like that it bothered us too, and that she was not the only one.


Once Abby was back and the bear was returned, we all went to the Science Center. It was a great time and we all had a blast. Emily did not like the life size Tyrannosaurus Rex that was moving and seemed to be watching her. She was up on my shoulders when we walked by, and Maegan noticed that she had her eyes closed and her hand over her eyes. Emily then reached down and grabbed my hand and pulled it up to her eyes as well and covered her eyes with my hand. Too funny! The rest of the day, anytime we got anywhere near (or Emily thought that we did) to the dinosaurs, Emily would squeeze my neck and tell me that she would protect me from the dinosaur. My hero!

We then got the girls their own new Build-A-Bear, Mary-Beth got a puppy, Abby a pink bear, and Emily a multi-colored bear. They were very happy with their new babies.  Unfortunately, Mary-Beth had to go back home tonight so she could get back to school, but we will be able to see her again on Friday when Abby rings the bell! It will be a great day and I cannot wait!

Thursday, September 23, 2010

Six to go!! Abby continues to do extremely well, and always impresses me with how well she is developing. She continues to do well with her walking and everything else.

After her treatment today, her anesthesiologist told us that during her treatment, they had to give her a breathing tube. I am thinking that she has some allergies, because every time she starts breathing deeply I notice that my allergies are acting up as well. So hopefully it gets better. If it doesn't, the anesthesiologist said that they want to make a new mask which would entail running another test scenario with the new mask. All of this would put her treatments back a week, and we do not want that! Dr. Mansur is strongly against having to do this with only 6 days of treatment left, and I agree!

Tonight, Abby wanted to go back to Bandana's to eat and see her buddy Bobby, who is her new friend. As we were walking up to the restaurant, Abby tripped over the concrete and landed on her knees. She wasn't hurt thankfully, but I think it hurt her pride a little. We all then went inside and had a great dinner and Bobby took good care of us again! We then got a picture of Abby, Emily, and Bobby together and we will put it on the blog as well. Abby continues to say that she wants to have her birthday dinner at Bandana's still, and I am sure we could make that happen for her.


Tomorrow, we should find out more about what the plan is for her new mask. They are going to have us come in a little later and get the new mask made just in case. So that means that we will get back on the road home later. Oh well, if it helps my girl get better, we will do it!

Monday, September 20, 2010

Busy Weekend


We had a great weekend. Abby finished week four of her radiation and only has 10 more treatments before she is done. We finished her treatments and then met with her doctors. They were very impressed with her progress and we found out that they will probably schedule the next MRI scan between 4-8 weeks after her last radiation treatment. The doctors told us not to be upset if the tumor hasn't shrunk any on the scan, and we told them that they shouldn't be surprised when they do the scan and the tumor is drastically shrunken or gone! We know that there are so many prayers being said for Abby and that angels are with her during this.

We then packed everyone into the van for the trip back home. We then all went and picked Mary-Beth up from school so that we could see her. Mary-Beth had a sleepover at one of her friends house that she was very excited about going to. We picked her up and spent some time with her and then took her to her friend's house. We then took Abigail and Emily to the SEMO District Fair.

When we got there the girls said that they wanted to ride a horse. The closest thing we could find was a camel so the girls rode the camel! It was so cute. Emily was sitting in the front, with Abby behind her, and half way around the circle Emily is holding onto the bar with one hand and covering her eyes with the other hand. Too funny!

We then walked around the fair some more and got Maegan her deep fried Snickers, the girls some cotton candy, and all sorts of fair food. As we were walking through, there were three little monkeys and Abby wanted her picture taken with a monkey. So they put the monkey on Abby's lap and she thought that it was the coolest thing ever. Emily didn't think it was as cool, and was climbing up my arm to get away at first, but towards the end gave the monkey some money and thought that it was pretty cool.




We also had another big deal this weekend. Abby has missed sleeping in her bed, which is the top bunk above Mary-Beth. She has been sleeping in our room at the foot of our bed in a pull-out bed since all of this has happened. Well, Saturday night, Abby climbed up the ladder (with only a little help from Daddy) and slept in her bed! We did have to put the monitor in there so that I could help her if she had to use the bathroom. She is getting better, but I don't want her trying to get down and fall off the ladder! So we instructed her to call out for Daddy anytime she needed to use the bathroom, which she did quite a bit. Sunday, we had a good day at church and then came home and packed up for another week of treatments in St Louis.

After treatment this morning, Abby only has nine more radiation treatments! She is excited to ring the bell at the end of it all! We are planning on having the family there for that moment, and will bring the video camera and will put that here on the blog. It will be such a good day and we are praying that she continues to do well. She is doing great is acting more like our Abby. She is playing with her sisters like she used to, even running after Emily trying to tickle her. She has been getting on the floor playing with her toys and is getting her attitude back as well. It is a joy to see her progress!

Thursday, September 16, 2010

Feeding the Geese

As of right now, Abby only has 11 more radiation treatments! She has really settled into a good routine. She insists on waking up with me at 5:30 am to get ready to go to the hospital. Then we go to the living room where Sponge Bob entertains Abby and usually Emily and Grandpa by this time as well. We then get dressed and then give Grandma, Grandpa, and Emily loves, and then Daddy gets to carry her out to the van. On the ride to the hospital, Abby has been insistent that she watches Alice In Wonderland. Thankfully, yesterday we convinced her that it was time for a new movie in the car and we now watch/listen to the Fox & the Hound. After eight back to back to back viewings of the movie, and Maegan and I know almost all the words and songs by heart.


After treatment and a short nap, Abby, Emily, Grandpa and I took a walk down the street to the pond where a bunch of geese like to hang out. And yes, Abigail walked the entire way down there, which is about 1/4 of a mile away! She was pretty tired by the time we got home, but she walked down there. We then feed the geese and there were literally around 100 geese fighting for Abby and Emily's attention. They thought it was pretty cool. After the bread was all gone we started back home, Abigail on my shoulders, and Emily being carried by Grandpa. We had a good time and then showed Mommy and Grandma the pictures and little video that I took on my phone. They were impressed with our 'Goose Whispering' skills.

We have all noticed how much progress Abby has been making and just how well she is doing! Her speech continues to improve, she was chasing Emily around the house trying to tickle her, and going to the bathroom is no longer a 20 minute ordeal. We appreciate seeing all of these little miracles.

After treatment and a blood draw this morning we went to the house. As we got closer we noticed that Abby as breathing quickly and loud. When we got to the house she continued to breath, almost like a panting. Maegan called the doctor and told them what was going on and they said that as long as she doesn't start complaining of not being able to breath, then we should be okay. Still, it is not a fun thing and its a little scary. They said that if her hemoglobin levels have dropped, which transports oxygen throughout the body, that may be why she is panting. Hopefully it will get better.

Abby also is insisting on eating Chinese food again tonight. That's my girl!

Monday, September 13, 2010

Progress

Sorry about the lack of updates lately, we have been experiencing "Technical Difficulties" with our computer locking up on us and shutting down on us in the middle of my typing.

Lately, Abigail has been progressing greatly! Over the weekend, she has started showing a lot more energy and seems to be returning to her old self. She has started playing with her toys on the floor with Emily, has been more active, and more independent.

On Sunday, she had her Primary Program. She had a small speaking part and when we pulled up to church, she said that she did not want her wheelchair, but that she wanted to walk. So we WALKED into church! She did wonderful during the program, as well as Mary-Beth! They both sang really well and Mary-Beth was able to read her part from her paper. Emily wanted to be a part of it as well, but was still a little young for that.

Today, Abby woke up in a great mood and we had a great trip to the hospital. She is blowing through the I Spy books and is blowing me away at how sharp her mind is. We will be looking for one item, and she will remember where everything is so that when I ask her about the next item, she is able to point right to it. She makes me look bad! I would like to say that I let her find most of them before me, but she usually beats me to it. Every once and a while, I'll get it before her, but not too often.

She also enjoys going back for her radiation treatments, mainly because of her daily gifts from the group "Friends of Kids with Cancer". We filled out a form that one of the nurses gave us for her with her general interests, and now everyday when she gets into the radiation room, there is a new toy waiting for her. It makes her day and is a bright spot for her in the darkest part of the day. It warms my heart and I am thankful for them for making my girl feel better! Emily and Mary-Beth also enjoy playing with the toys too, especially since Abby is good at sharing.

I did hit another low spot today right before I went out for my run. I was helping Abby go potty when I noticed the back of her head through her hair. I knew Abby has been/is losing a good amount of hair, but up until today I did not notice it. Her hair parted just right, and all I could see was the back of her head, no hair. There is a 1"-1 1/2" line on the back of her head that runs pretty much from ear-to-ear. Her hair covers it well, but since I saw it this afternoon, I have noticed it a lot more. Once again though, Abby pulls me out of it. I'm sure she saw the pain in my eyes from seeing that and she told me "Daddy, don't worry, it'll grow back!" She is so strong and durable, she strengthens us with her spirit and faith. What a special girl!

Tonight, she was feeling really good and was walking down the hallway to the living room when I came out from behind her and said "I'm gonna get you Abby!", she screamed and laughed and then started RUNNING DOWN THE HALL! Not just a fast walk or shuffle, but a run! She is doing so well! When Uncle Mike got home, she again went running to get him and is just walking so much better. I am so thankful for these little miracles that she gives us!

Right before the girls bedtime, I was looking through the pictures on my phone, and came across a video I had taken of Abby during her initial week in the hospital where she was saying hi to the camera. She seemed so worn out and tired and weak. Then I went to the living room and see her today and how much she has progressed in such a short period of time! I know that she is going to beat this tumor, and I know that all of the prayers from everyone are helping not only us, but also the doctors who are treating Abby.

Sunday, September 12, 2010

September 13, 2010



Monday is Childhood Cancer Awareness Day.  With public education and financial support to organizations who do all the research we will have the opportunity to witness miracles for children who are diagnosed with cancer.  We need to help spread the word in order to help these sweet kids. Let's make the gold ribbon campaign as successful as the pink ribbon campaign. Every penny helps, all year long.

Here is a small list of organizations that helps further research of pediatric cancers.

National Cancer Institute
American Childhood Cancer Organization
Pediatric Brain Tumor Foundation
Children's Cancer Research Fund
Pediatric Cancer Foundation

Friday, September 10, 2010

Treatment Hump Day

Today was Abigail's radiation hump-day!! Abby finished her 15th day of radiation treatment out of her 30 days. So from now on, we are on the downhill slope of treatment. Abby is looking forward to ringing the bell in the radiation center at the last day of her treatment, and so are we. She is going to bang that bell and rip it off the wall! It makes me teary just thinking of her ringing that bell.


We were all very excited to finish treatment today and talk with some of the doctors. We were even more excited to come home and get Mary-Beth and catch up on a weeks worth of fun and tickling. We got home and had enough time to relax a little bit and then I ran out and picked Mary-Beth up from school. I was excited to see her and I think that she was happy to see me too. It will be a good weekend.

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.