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.

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


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.

Thursday, September 9, 2010

There Have Been Dinosaur Sightings!

We had a little visit from our bear today, but besides that, she has been an angel. We went to our treatment and then came back to Grandma and Grandpa's house for a quick breakfast and to pick up Grandpa and Emily. We then all started off to the Botanical Gardens. The girls were very excited to see the dinosaurs.

I have to say that the Botanical Gardens are beautiful. The  DinoQuest display was amazing as well! We entered into the site which was in the rain forest area and nice and humid. The plants in there were beautiful and large. It was really neat the way that they put the dinosaurs into the trees and plants so that as you walked around the corner you came upon a T-Rex or another dinosaur. The girls had a blast and so did we! Maegan took some photos on the digital camera and we will get them uploaded tomorrow and put on here.

When we got home and gave the girls their baths. Maegan brushed Abby's hair before her bath, and got a lot of hair left over on the brush. I noticed a lot of hair coming out during the bath, and then Maegan pulled out a handful when she brushed her hair after her bath as well. we put a picture of it on Facebook and here as well. It seems that her hair loss is all on the back of her head, well under her hair so it shouldn't be noticeable, even if she continues to lose it. Hopefully she doesn't.

Tomorrow will be Abby's half-way point of her chemotherapy! Hopefully she continues doing well and not have too many side effects. Also, while we were at the hospital this morning, the nurses told us that one of Abby's doctors, Dr. Reuben, was having a ceremony for him and one of his fellow doctors where they were receiving a contribution from Hyundai for $100,000 for continuation of research into treatment of and prevention of pediatric brain tumors! We were excited to see him get the funding and hopes that his work with Abby will help so that no other kids or their parents have to hear the words "Your child has a brain tumor". We pray that he and other doctors like him can be lead to a cure for the tumors and cancers!

We are looking forward to heading home tomorrow and seeing Mary-Beth and spending some time with her! We have to catch up on a weeks worth of tickling and hugs!

Wednesday, September 8, 2010


Today we had a great day, except for the morning...we had a visit from a bear again this morning. I thought that the bear was going to attack a nurse, but I corralled the bear and put the claws back in, and got her out of the hospital without anyone getting hurt! Once the bear was put back into her cage, and Abby took its spot, we had fun.

When we got home, Maegan got a call from the Make-A-Wish Foundation who said that they had received Abby's application and she was accepted for a wish! She says that she wants to kiss a real prince, meet all of the princesses, have a real princess gown, real tiara, princess high heels, and to ride the float with the princesses during a parade. When we told her that they accepted her, she got so excited and started planning all sorts of things that she wants to do. We'll see what she comes up with.

Tonight, we went to Fortel's Pizza Den where we ate some awesome pizza and I then got 4th overall ranking on the shooting game there. What can I say... Tomorrow, we are going to go to the Botanical Gardens where they have a DinoQuest display there that Abby is excited to see. She told Maegan that she wanted to see the dinosaur bones at the museum, so we were excited when we found out that the Botanical Gardens was doing the display this week.

Pretty girls!  Out for dinner at Fortel's Pizza Den.

We have noticed that Abby is starting to loose a lot of hair lately. When Maegan brushes her hair, there is always a good amount of hair left over on the brush. I've been noticing a lot of hair in the tub after her bath. The doctor says that she'll probably loose some hair from behind her ears and around the back of her head. It should be able to be covered up by her hair and shouldn't be her whole head, which is good since she loves her hair so much.

Treatment Update

Abby's treatment schedule (tentative, subject to change, as told to us on Friday, September 3, 2010)
******This is for information only! Just want to let everyone know what's going on*******

Currently we have Abigail on the following medications :
-Ranitidine Syrup, (8.7mL) 2x a day - for stomach
-Dexamethasone, (2mL) 2x a day - "yucky" steroid. Recently been reduced to 2mL in the am
and 1.5mL in the pm.
-Sulfamethox, (4mL) 2x a day - preventative pneumonia medicine taken Tue, Wed, and Thur.
-Loperamide, (5mL) as needed - Diarrhea
-Ondansetron, (5mL) - take 2.5mL 30 minutes prior to chemotherapy and as needed
-Veronistat also called SAHA, (3.3mL) taken nightly Sunday through Thursday

She takes the above medications as directed daily. She is in the middle of her third week of radiation therapy as well at the Siteman Cancer Center which is a part of Barnes Jewish Hospital/Washington University. Her treatment is originating from Children's Hospital. All of the hospital's are basically connected together, which is nice. She receives her radiation therapy Monday through Friday at 7:00 am, except for Wednesday when she goes in at 8:00 am. Those are the times we have to be there, but we don't get back for treatment until around 8:00 am and 8:30 am, usually.

We meet our Radiation Oncologist, Dr. David Mansur every Monday when Abby wakes up from her anesthesia. Abby's Nuero-Oncologist are Dr. Joshua Rubin and Dr. Leili D (unknown spelling or pronunciation, sorry), and her Neuro-Surgeon is Dr. David Limbrick. They also have their residents who work closely with them and with us, as well as numerous nurses and technicians. All of her doctors and those involved in her treatment meet weekly to discuss Abigail and her treatment and progression. We are very pleased with our team of doctors and what they are doing for our daughter.

After Abby's radiation is completed on October 1, 2010, she will begin a maintenance schedule of the SAHA. She takes 180 milligrams of the SAHA currently which is being used together with the radiation. It is known that small children can tolerate 230 milligrams safely. That is part of the clinical trial, which is to determine how much SAHA children can safely tolerate together with radiation. So, after her radiation treatment, she will start a 28-day cycle of 230 milligrams of SAHA. These cycles will continue for up to 12 cycles, unless it is determined that it is not doing any good, at which point they will take her off of the chemo.

The SAHA has been used in other tumors and cancers in adults with positive results. This is the first time, with Abby being the very first, that they are using the SAHA with radiation. The goal is that the SAHA will turn off the regenerative part of the cancer DNA, and then the radiation comes in and knocks it out. The maintenance is designed to eradicate any left over tumor and completely wipe it out.

The doctors told us that when they do a scan and they can no longer find any traces of the tumor, then she will be classified as in "remission". If, (when), she is in remission for 3 - 5 years, they will declare her as "cured". We are looking forward to hearing those words!
I hope this clears up or answers any questions that have come up. If it generated any new questions, just let me know.

Tuesday, September 7, 2010

Labor day weekend

What a great weekend! It was so nice spending an extra day with Mary-Beth at our house. Abby continues to amaze me at how well she is handling her treatments and her medicines. She is truly my inspiration and my hero.

We had a good drive up to my parents house, except for Emily making it known, very loudly, that she was ready to be out of the van. Then, we saw Lucky Charms flying all around, so we figured she was done with her cereal... The girls were excited to see their Grandma and Grandpa Jensen, as well as Uncle Mike again. Abby wanted to run to Grandpa, but held up a little bit and made it a quick walk, but I was impressed to say the least.

Abby woke up for her treatment very well this morning, and we had no problems getting to the hospital for treatment. But once again, as she wakes up from anesthesia, she turns into a monster that only wants her daddy! The nurses were not allowed to look at her again, and she only wanted to lay on my chest, so I let her.

We did find out thought, that on Friday night, my brother, Mike, had his car broken into while in the back of the house. Someone broke out the passenger side window and took everything that wasn't bolted down to the car. We usually park in the front on the curb, but we made sure that there is nothing of any value left in the car when we lock it up for the night. So Mike is out an I-Pod and an I-Pod touch, and a bunch of books, including his scriptures. Really! Who steals someone's scriptures and scripture case?

When Abby weighed in today, she came in at a whopping 60lbs! She is gaining weight during chemo and radiation. That is good though. We know that a lot of it is from the steroids, which they are slowly weening her off of. As of this week, instead of taking 2mL twice a day, she is at 2mL in the morning, and 1.5mL in the evening. If she continues to do well, for next week she will go down to 1.5mL twice a day and then continue until she is off completely.

Tonight, I will get on here and explain what we learned recently for her remaining medicine, as well as her maintenance period. Until then!

Sunday, September 5, 2010

Sunday Glory

Abby is such a strong girl, she continues to amaze me. Today was a very good day for her. She woke up well and was in a great mood all day long. She even took the steroid medicine well for Maegan this morning since she mixed it with the Boysenberry syrup. She had a great time at church today. She didn't want to go to her Primary class though, she just wanted her daddy. So I went with her to her class where they practiced for the Primary program next Sunday.

It was a good, lazy day after church today as well. We lounged and napped on the couches this afternoon and just enjoyed being together. Abby enjoyed being with and playing with her sisters and they were very good about playing with her as well.

Tomorrow we will head back up to St. Louis to start week 3 of treatments. Hopefully she continues to progress and do good and beat this tumor!! As for me, I am off to bed and hopefully have a good night sleep! Abby is spending the night with her Grandma and Grandpa Miller and was so very excited about that! So I'm sure she is having a ball entertaining her grandma and grandpa.

Saturday, September 4, 2010

Tough Girl

Unfortunately, Abby felt some side effects from the chemo and radiation today. Luckily, they weren't too bad, but I hate to see her feel badly. She woke up and said that her stomach was bothering her and had some diarrhea and nausea. They had given us some medicine to cover both so we were able to get those to her pretty early and minimize the effects. I just hate seeing her not feeling well especially on such a beautiful day.

We are happy that her doctors are starting to ween her off of the steroids. She still hates them, even though one of the nurses told us that if we mix it with some boysenberry syrup, it will neutralize some of the bitterness. It works! She was still hesitant about taking it at first, but once she tasted it, it was much better and she had no problem taking it. Hopefully that stays that way.

Abby continues to impress me with her strength and patience. They gave Maegan her blood counts on Friday, and all of her numbers have gone down, but not to any dangerous or concerning levels. But it just lets you know that she is not feeling well. But, even knowing that she doesn't feel good, she does not express it or complain. Mary-Beth wanted to decorate a crown with Abby today, and she told her that she didn't want to because she didn't feel well. When Mary-Beth continued to ask her, Abby looked at her and said "I told you we will do those when I feel better, now leave me alone!" I was trying not to laugh, but couldn't help but feeling bad because she felt badly.

Abby is looking forward to going to church tomorrow and practicing her part for the Primary program next Sunday. She loves being able to see her friends there and all of the people who are pulling for her.

Thursday, September 2, 2010

Movie Day

Abby continues to inspire me and make me a proud daddy! She is doing so well taking her medications and being a trooper about having to go to radiation early in the morning. Yes, she is a bear at times, but for everything that she is going through, her being a bear for an hour is not bad at all. I'm sure I act worse than that at times, so she is an inspiration to me!

Abby got her treatment this morning, and now that we are at the 7:00 am appointment time, we are in and out of the treatment center a lot faster! Its amazing how much just a 30 min change can get us back to Grandpa and Grandma's house about an hour earlier.

When we got home, Maegan went out with one of her good friends and a family friend from here, Emily Wood for an afternoon of manicures and pedicures. They deserve it. While they were out having their girly time, I took Abby and Emily to see Toy Story 3 at the theater. When we walked into the theater, we were the only ones there, and I told the girls that I had booked the entire theater just for us! They thought that was pretty cool, and I'm glad no one else came in to the show. We all enjoyed the movie, and Emily watched most of it, then towards the end started roaming around the theater. Since no one else was there, I let her roam and have fun. It was a good time and I love spending time with my girls!

We got home and we all took a good nap. Maegan got home shortly after we did, and she wrestled (literally I think) Emily into her nap, and I napped with Abby. Next thing I know, Abby is waking me up and it's 5:00 pm. We had taken a 2 hour nap. I didn't realize how tired I was. Abby and Emily are used to taking good naps like that, but not me. It was nice.

My parents then took us all out to eat at Bandanna's for some good BBQ. It was a good meal and our waiter, Bobby, went out of his way to make Abby and Emily feel good and smile. He found two bandannas, one red and one blue, that they had rolled up and inserted about a dozen small tootsie pops into, and gave one to Abby and Emily. You should have seen their eyes light up. Abby has been talking about wearing her bandanna like a cowboy ever since. Towards the end of the dinner, Bobby asked me if he could get Abby a brownie with ice cream on top. I knew Abby would love it, so of course. He brought that to her and she just beamed and loved every bite of it. Emily was so interested in her suckers that she did not even want a bite. Abby left Bandanna's talking about her new "great friend" Bobby, and how she wanted to come back there for her birthday dinner! What a girl!

We got back to the house and Abby tells me that she is hungry again. Since there was no way that she could be hungry after devouring her dinner and part of mine, I told her that she could have it after her treatment in the morning, so she seemed to accept that. Baths and then bedtime stories with Uncle Mike, and it was off to bed for the little ones.

So week 2 of radiation is coming to a close and Abby seems to be responding well. Her walking continues to improve and we think her speech is getting better as well. She does tell us that her right eye gets fuzzy at times, and if things are too loud or busy it gets hard for her to hear things. For all of the challenges that she has faced and is yet to face, she is definitely my hero!

We are looking forward to heading home for a long weekend tomorrow and seeing Mary-Beth. We love being able to stay here with my parents, but it is always nice to get home and to recharge the batteries for the upcoming week. Thanks again for all of the prayers from everyone and keep them coming!

When Abby Smiles Foundation

Sorry about the non-post last night. With a 5:00 am wake up call and getting the girls in bed around 9:00 pm, I didn't stay up too much past them. Yesterday was another good day. Abby woke up in a good mood again and was very pleasant all morning. I'm starting to think that there is something in the anesthesia that turns Abby mean to everyone but me. When they call us back to get Abby after her radiation as she is starting to wake up, she must leave the sweet little girl in dreamland, and a vicious bear takes her place! Usually, Maegan ends up taking the brunt of the abuse (she hates it but knows that it is the anesthesia and not Abby talking). When she woke up Wednesday morning, the nurses were in the abuse line of fire! They would try to check her pulse or listen to her lungs, and would get greeted with a "Don't look at me!" or a kick in their direction. The only one she wants is her daddy! She will eventually sit up and then lean into my chest and snuggle on me.

When she finally stopped the verbal abuse, we went to the cafeteria once again. We then told Abby that we couldn't keep going to the cafeteria every day because it was too expensive. Abby then started with the puppy dog whimper and pout lip, but we didn't cave in, so Abby started the bombardment of Mommy. After a few "Don't look at me's", Maegan had enough and told me that she would meet us in the lobby when she was in a better mood. I can't say I blame her. After a few minutes, Abby calmed down and finished her breakfast, and then said she wanted to apologize to Maegan. So I took Abby up to Maegan, and she apologized and was in a good mood for most of the rest of the day.

On the way home, we spoke with Aecy Walker from the Police Department who said that they are almost finished setting up the "When Abby Smiles Foundation", which will be a not for profit foundation. We picked out three board members and will get their information to the attorney so the foundation can get established. We are excited to have that set up and running!

We then got home and spent the day hanging out with Daddy while Grandpa went to a Retired Military Officer meeting, and Mommy went to the skeleton of a mall, the Jamestown Mall, to find some maternity clothes. I got the girls to take a little nap and then we had spaghetti and meatballs for dinner. It was a good day and we had fun!

I'll post today's adventure tonight.

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.