Wonderful Tuesday

We had a wonderful day today. We knew that today was going to be a good day when Abby actually woke up in a good mood. She had a great morning waiting for her treatment as she went through the I Spy Christmas book finding everything there is to find in that thing. When she got called back they let Maegan go back and take pictures of Abby with her chemo mask on and the radiation room.

After treatment we had breakfast in the cafeteria, Abby's new favorite, and then went to the Manchester Mall so Maegan could find some maternity clothes. While she looked through that store, Abby and I went for a little walk through the mall and saw a Godiva chocolate store and Abby wanted to get mommy a Mother's Day present, so we went in and found my sweety some sweets! She loved them!

After that, I dragged Abby down to the GNC store so daddy could do some manly shopping. We then got Abby some new sunglasses as well as a new hat. She looks fabulous!! She wore the hat all day, and I imagine that she will have it on all day tomorrow as well.

I forgot to mention this yesterday, but Maegan and I thought that it was pretty neat. While we were walking through the hospital foyer, the 'magic piano' started playing "Somewhere Over the Rainbow". It seems that rainbows have become Abby's theme! While she was still in the hospital, her primary class made her some get well soon cards where most of them had a rainbow colored on them. The primary class from my parents church also made get well soon cards that were adorned with rainbows. We thought that it seemed
appropriate and it touched us when that song started playing.

Today I also talked with my buddy Jeremy from Cabela's because the girls have been dying to go and feed the fish again, and also to feed the snapping turtles. Jeremy said that he has cleared it with Cabela's and is going to meet with Pam from the Children's Hospital about making a Children's hospital adventure day at Cabela's with different activities. I hope that it takes off, because I know that Abby and Emily had a blast and it made Abby feel so good to get out and have fun, not thinking about her tumor or how hard it is to walk and talk now. I enjoyed seeing that twinkle in her eyes again and think that the adventure day with Jeremy in charge would be amazing.

Overall, Abby has had a great day and I am praying that she continues to do well!

Monday Treatments

Abby was a little bear once again this morning. She hates having to wake up that early to go to the doctors, and who can blame her? Once we get to the doctors and start going through the I Spy Christmas book, she is in a good mood. Then, they take her to the back for her "nasty milk" (anesthesia) through her broviak. She knocks out really well, but then she wakes up in a mood again. For today's treatment, we got thrown a little curve ball. We are usually in the treatment room on the left, but they had someone in there that took longer than expected, so we got put in the right treatment room. Nothing major, but it was weird going into the room and the whole thing being the opposite of what we had been used to.

When she woke up, we met with Dr. Mensure (sp), our radiologist, who told us that everything is looking good so far, and that IF there are going to be any side effects, they may start manifesting themselves within the next week or so, usually around week 3 of treatment, so fingers still crossed.

Abby then insisted that we eat breakfast in the hospital cafeteria, and since we were all starving, we thought that was a good idea too and went and had breakfast. When we got home to Grandma and Grandpa's house, Maegan had a good nap and then Abby and Emily took a nap together. They were so cute together. When I closed the door, they were hugging each other, nose to nose. Maegan checked on them a little later, and Emily was under the covers, asleep on Abby's stomach and Abby was out cold on her back. So cute! I wish I could have gotten a picture of that.

Mae then went out to do some running around in the peace and quite by herself, and Grandpa and I took the girls to Best Buy to return the web-cam that we had for one day that wouldn't work. The girls wanted to get Flushed and Madagascar 2, so being the softy that I am, I caved in and got them. What can I say, I'm a softy!

We got home and Maegan got the web-cam set up and we got to talk and see Mary-Beth on Skype. It was very nice to see her. So if anyone has Skype, let us know and we can get on there and see you.

Tomorrow, after treatment, we are going to go out and get Maegan some new maternity clothes at the mall and maybe find me some shorts that fit me and don't fall off if I don't wear a belt. Good night everyone!

Sunday, Sunday

We had a good day at church today, where Abby and Mary-Beth got to show off their new skirts and t-shirts that Mommy got them from the store on Saturday. Abby was also very good during church, while Emily was not. I spent most of church listening to Emily scream for no good reason. After around 10 minutes of screaming, she stops and looks at me, then in the calmest voice says "I'm done, Daddy" and she was. She was fine after that. She has the terrible twos on a schedule and once it's out of her system, she's fine.

Abby then went to Primary where they were practicing for their program which will be the second Sunday in September. She would only go up there to the stand if I went with her, so I did. She was so cute singing her heart out to all of the primary songs. Then she got to help direct the music wearing the razzle dazzle that Sis. Brazel brought which consisted of a sparkly scarf, shoes, and also thick black glasses. She thought that was pretty cool. Mattie then asked me if Abby would be feeling up to doing a little speaking part with the rest of her class. I asked Abby if she wanted to do that and she said that she would. So Abby will walk up to the podium with the rest of her class and give her little speaking part. I'll be there to help her walk up there, but her spirit will carry us all. Mary-Beth also has a speaking part with her class and I am so looking forward to the program!

After church we stopped by and visited Curtis, and then made our way home after stopping off at the Windbiglers for a minute. We then continued home where we finished packing our clothes and then started our trip to St. Louis. Abby did much better with her medicine tonight. I introduced a Skittle with her medicine and I think that helped. She enjoyed taking her chemo and was cheering when she saw me bring it in. That blows my mind! The one drug that I am scared to death for her to take is the one that she loves and can't wait to take. As long as it helps my girl, that's all that matters.

We are going to try to wrangle the girls into bed now, Abby has another early morning treatment at 7:30 am. Keep the prayers coming. They help so much.

Friday Date and Saturday Running

Friday was another busy day for the Jensens.  In the morning we had my Dad and Emily come with us to Abby's treatment so that they could see where we go every morning. When Abby went back for her treatment, Grandpa came back with us so Abby could show him where she gets her treatments. When we went back there, the nurses had a Cinderella Barbie and the book Thumbelina. Abby was so excited and happy that she got those presents and we thought that it was pretty cool that she got them as well.

After treatment, Abby woke up and was a grump. Her latest thing is that she doesn't want anyone to look at her, except her daddy. She tells Grandpa and Mommy to look away from her until she wakes up enough to start being in a good mood. We then went to breakfast in the Children's Hospital cafeteria because Abby had to give blood at 10:00 am. So we all had breakfast, and then Abby finally started to wake up. We then went upstairs and received her second weeks worth of her chemo and gave them some blood. We then had to tell Grandpa goodbye for now and started the drive home.

Maegan and I picked Mary-Beth up from school, just the two of us, and took her out for some alone time with us. She was very excited and showed us the stick bug that her and Grandpa Miller had found that she brought in for show-and-tell. It was pretty cool. We told Mary-Beth that we wanted to take her to the movies, and she was ecstatic! We went and watched Ramona and Beezus and I watched a little girl almost single handedly devour 1 1/2 buckets of popcorn by herself!  Towards the end of the movie, somebody -maybe me- started a little popcorn war with Mary-Beth and Mommy. It was fun and we all had a great time. We then took Mary-Beth home so she could see her sisters who were very excited to see her. We brought them all home and put the little girls in bed. It was a good day.

Today seemed to be a run-run-run day!.Maegan and her mom took Abby to do some running, while I took Mary-Beth and Emily running some more. We took care of some chores at the bank and then ran by the Police Station. We then met Maegan and Abby at the Mongolian Grill for lunch where we watched Mary-Beth and Abby eat half of the buffet by themselves.  From there we went for more running. I took only Emily with me while Mary-Beth, Abby, Maegan, and Grandma went to get their nails done.

Emily and I went over to Plaza Tire where we had to get 2 new tires for the van so we don't have a blow-out on the way to St. Louis. Emily and I then took the partially newly "shoe'd" van to get a good washing, it was filthy. When we got home, Abby was napping and Mary-Beth and Emily went out and played in the sprinklers while I cleaned out the inside of the van. Their fingernails looked amazing. I'll get a picture of them tomorrow and post them.

I also want to say thanks to our "cleaning angels" who have been cleaning our house for us while we are out. We can't thank you enough for what you are doing. Coming home to a clean house after a week of treatments and the mental stress is one less burden and stress that we have to deal with. And another big thanks to our neighbors Rob and Kim for maintaining our grass and our cat Hazel for us as well. You all are sent from God to help us and we thank Him and you everyday in our prayers.

Fish Feeding at Cabela's

Abby was so happy and put away the grouchies this morning on the way to the hospital.

Abby had a great day today and hopefully they continue to be good. After Abby's treatment today, one of my buddy's from high school, Jeremy Applegate, mentioned that he works at Cabela's and can get us back to feed the fish in the aquarium. Abby was doing good and feeling good after her treatments, so we took him up on that offer. We met him at Cabela's and it was awesome to see and talk with him again.

Jeremy took us to the aquarium and got a bucket of minnow and goldfish for us. We then went to the top of the aquarium and Jeremy showed Abby what to do. He then gave Abby a minnow and she tossed it into the fish tank. The minnow didn't even make it to the water before it was gone. Abby had the hang of it by then and was throwing minnows and goldfish in to their doom and had a blast! Emily thought it was okay, but let Abby have most of the fun.
 
From there, we went to the trout pond to feed them. They got some "dog food" looking food, and Emily was much more at ease feeding the trout. The girls had a blast and it was nice to get them out to do something, anything. But this was really cool! Jeremy invited us back anytime to help him feed the fish again, and we will take him up on it. Mary-Beth will love it too, so we are really excited to bring her up to do this as well. We then worked our way home and laid the girls down for a nap while Maegan cooked dinner for everyone.

We are looking forward to coming home and to see Mary-Beth again. We miss her so much. She requested that Mommy and Daddy pick her up from school tomorrow. So we arranged with Grandma Miller to spend some time with Abby and Emily while we spend time with Mary-Beth. We are thinking of taking her out to watch a movie that she was wanting to see with one of her Nickelodeon stars. It will be good to spend time with her.

Tomorrow we will leave the hospital and go home after her radiation treatment and then her blood draw. I think that, while we are home, I will try to find prices for concreting or asphalt (whichever is cheaper) the garage. As of now, when we try to get Abby to the car, we can only get her as far as the end of the ramp because the wheelchair will not travel well on the gravel. So, when Maegan even tries to push Abby to the car, she can only take her so far and I have to carry her the rest of the way. I have no problem at all doing that, but then we have to come back and carry the chair to the van and put it in the back. So, if anyone knows anyone who does concrete/asphalt work, send me a referral.

Mommy Daddy Date!

Abby likes her princess quilt that Mrs. Sara made for her.

Abby likes the I-Spy books in the waiting room.

Abby does not like to wake up early and go to the hospital! She insists on telling us all about it in her "puppy dog whine" the entire trip to the hospital. Once we get to the hospital and down to the Radiation Oncology department, we found a "I Spy" book and Abby and I find everything that we can in the book until its time to go back for treatment. This morning, the first thing she says when she wakes up is "we didn't find the red balloon", so I have to run back to the waiting room and get the book, so we can find the balloon. Then she is in a bad mood until we go to the gift shop and she finds a little halloween pumpkin snow globe, or as we call them dream bubbles, that has a multi-colored light in it, and a neck pillow that looks like a puppy dog. That made her happy and took her mind off of wanting McDonalds until we got to Grandma's and Grandpa's house.

We can tell that the radiation and chemo are wearhing Abby out. When we get to the house, Abby just lays on the couch until its nap time. Maegan actually got Emily to nap while I went out for a run, and then when I got back we put Abby down for her nap as well. We then asked my dad if he could watch the girls while we go on a date. Being an awesome dad, he agrees and Maegan and I get to go watch "The Sorcorers Apprentice". It was a very good movie and we had fun getting out of the house and by ourselves for a couple of hours.  Luckily the girls were very good for Grandpa.

I just hope that Abby will get some energy sometime soon. I hate seeing her just sitting there. I also hope that she does not get sick from the chemo, that would be good.

Tuesday Sickness

Sorry for the not posting last night. It was a long day and Abby did not feel well after her morning treatment. After her treatment, the only thing that Abby wanted was some White Castle Slingers. That's my girl! When we got home Abby ate about 4 slingers as well as half of a chocolate shake. She still has her appetite! It's all gone to her cheeks. She then took a nice long nap!

Two and a half hours later, Abby wakes up from her nap and is complaining of her stomach aching. I'm not sure if it was from the slingers or from her chemo. Either way, she came close to blowing chunks several times. Luckily, we got some nausea medicine into her before she returned the slingers to us. After a good rest on the couch, she started feeling better and proceeded to inhale a ton of roast. potatoes, and salad.

So hopefully today's treatment will treat her better. Abby is heading back for a nap and here in a minute, Maegan and I are going to sneak out for a quick afternoon date.

Benefit Dinner

We are truly blessed!  The dinner yesterday was truly amazing and humbling.  Never in my wildest dreams could I have imagined the outpouring of love and support as we witnessed yesterday.  When we first walked in and saw all of the items that had been donated for the auction, I was floored.  Then, as the benefit began, people literally started pouring in non-stop for hours!  A very conservative estimate of the attendance was around 3000 people.  And with the outpouring of support and love, the words "Thank You" do not seem appropriate.  It does not seem to be nearly close to being strong enough words to express our feelings for everything.

We are truly humbled by the hard work that the police department and our church put into this dinner at such a short time.  I know many people, with whom we go to church, were floored by the show of love and support that the department has showed not only me, but my family in finding ways for me to be home where I am needed during this time.

Abby had a wonderful time yesterday, as well as the rest of us.  Abby was so excited that she did not take a nap until 5:00 pm and that was only because she fell asleep in her wheelchair.  I took her back to the nurses office where she was out cold on the lounger.  During the benefit she had a mermaid painted on her right cheek and a rainbow painted on her left cheek.  Mary-Beth had almost her entire face painted by the end and then she insisted on painting my face for me.  What I ended up with was a multi-colored beard.  So, I then held her and painted a mustache and then a line down her nose, with a line under her eyes.  Not nearly as clever as hers, but she didn't have much available space left.  Also, at the last count, I know that Mary-Beth had at least 5 cotton candies before I lost track!  Abby had at least 3, and Emily only had one.  Emily then went home with my parents and we continued the party until 8:30 pm when we finally loaded up the van and took Abby to the house.  Mary-Beth is staying with Maegan's mom so she can go to school.  We already miss her!

Once home, we unloaded the van and then loaded up our clothes.  Abby somehow managed to stay awake until around 11:30 pm.  We made it to my parents house at midnight and all of us crawled into bed.
 

Abby's treatment went very well this morning.  She was a little grumpy at 6:00 am, but woke up well and was in a good mood for the rest of the day.  She came home and stayed awake for a while and then took a nice 2 1/2 hour nap.  Emily did not want to take her nap, but eventually she crashed too, and had a good nap.  She is definitely in the terrible 2's stage.

Abby is in bed now and should have another day of treatment in the morning.  She still loves taking her chemo and hates taking the steroid.  They have lowered the steroid dosage, but that does not make it easier to take it.  She is excited to be totally off of it and we will be ready by then as well.

Thank You!

What a great day! Thanks to everyone for being so generous to my family. We love you guys.  Now it's off to St Louis then an early morning for treatments. I'll do a good blog post tomorrow, because I don't think it will happen tonight.

From Maegan:

Abby and all the rest of us had a blast at her party! She was so happy to see her friends and make new ones. Thank you doesn't even begin to express our gratitude to all who came to Abby's benefit! We are truly overwhelmed by everyone's generosity.

On The Way...

From Jon:

We are excited to be on the way to the benefit! Abby is in a great mood, so hopefully it stays!

Kars 4 Kids!

Today was a hot and humid day where a lot of good things happened for our family.  My parents came down from St. Louis for today’s events and also the benefit dinner for Abby tomorrow.  

We then went to the Kars 4 Kids show at the Arena Building where it felt around a million degrees!  We got there and they were ready for us.  We were taken up to the front and were introduced.  Aecy Walker kind of gave a background on us, and then Maegan took the microphone and filled in all of the details about Abby.  While Maegan was speaking, the Kars 4 Kids people passed around a box and collected donations.  Then, the head of the Kars 4 Kids presented us with a check for Abigail to help with her bills and transportation, food, and any other expenses.  Such generosity!  It chocked me up just seeing these “rough guys” giving so much for a little girl they didn’t even know.  Then, someone said that if somebody would match the money from the pass around box, then he would match it as well.  The guys from White Trash Customs said that they would match it, so the other guy did as well!  Still leaves me speechless!  We then took Abby to Dairy Queen so that we all could cool down.  

A nice ice cream was good to stop the steam from pouring from our backs.  After ice-cream we picked up a web camera so that we could keep in touch with Mary-Beth throughout the week, and I could see my little girl.  It’ll be rough only seeing her on the weekends for the next six weeks, but its good knowing that she will be well taken care of, but it will be nice to see her throughout the week.  

Tomorrow will be a busy day, but we are excited to show Abby all of the love and support that she has.  She is very excited and so are her sisters.  Mary-Beth has already planned on getting her face painted completely, several times, eating all of the cotton candy she can stand, and then do every game and everything else.  I’m sure that her sisters will be right behind her the entire time.

Scrapbook Page

Heather Eakin made this for Abby.

Day One of Treatments

Today was Abby's first day of radiation after receiving the chemo for the first time last night.  I think the worst part was just waking her up early to get to the hospital at 7:30 am?  She can be the biggest bear in the world when she is awoken from her beauty sleep!  All she said on the drive to the hospital was "Grandma!".  Just imagine that for 30 minutes straight in the most whiniest voice!  I was starting to go nuts!

When we got to the hospital, she continued until about 5 minutes before we went back to her treatment, then she woke up and was in a great mood!

We then both got to go back with Abby since it was her first round of treatment.  I got to hold her while the anesthesiologist put in the knock out juice.  Talk about some potent stuff!  It looked like milk, but knocked her out quick!  He started putting the juice into her broviac tube, and then she yawned, and was out!  I then laid her down and we had to leave.  What a reality check!  Maegan and I both got a faceful of it!  We then went back to the waiting room, trying not to cry too much, but then we were greeted by a waiting room of sympathetic eyes and tears of people who had/are going through the same thing.  We know that we will get to know many people over the next six weeks.

A short time later, they came back and got us and said that she was done and starting to wake up.  She woke up in a good mood, and then crashed back into her bad mood again.  So we drove home and then she snuggled with Grandpa Jensen on the rocking chair for a while.  We then gave her the daily dose of her steroids, and she was asking for her "cherry" medicine, her chemo!  That's crazy that they can make the chemo taste good, but the steroids are nasty!  Maegan and I then took Abby back and laid her down for a nap, and decided that it was a good time to take one ourselves!


When we finally all woke up and got ourselves together, we made the journey home for a busy weekend. Saturday, my parents are coming down for the weekend and we are going to go to the Kars for Kids where they are going to give Abby a donation!! Then Sunday we have Abby's benefit dinner which will be awesome!

As we pulled up to the house we were shocked to see our awesome neighbor, Kim, finishing up mowing our grass, and that our friends, Lindsey and Dean, and a lot of the dads from Oak Ridge, had built and put up a wheelchair ramp to our deck and then up to the back door!  We truly have some amazing friends and family!  I'll put up some pictures of the ramp tomorrow and we are looking forward to what tomorrow has to bring!

First Round of Treatments

From Jon & Maegan:

Abby is back getting her first round of radiation treatments. She went to sleep so easily.  Every time Maegan and I think we are doing well, reality has a way of smacking us in the face!

960 KZIM - 1400 KSIM

Here's the article from the radio stations.

KFVS 12 News Clip Link

Here is the link that has the interview from tonight.  They did a good job with this!  Enjoy!

http://www.kfvs12.com/Global/story.asp?S=13015132

PS- I have to give my Sister, Colista, a HUGE Thank You for cleaning up and making these posts make sense and very appealing to the eye!  Thanks Colista!  We love you guys!

Treatment Info

We are in St. Louis tonight and had gone to the St. Louis Children's Hospital earlier and spoke with the nurse who is in charge of the clinical trial.  She gave me the chemo with explicit instructions that Maegan is not to be near it and I have taken that to heart!  The nurse explained to us that Abigail is the first person to be involved in this clinical study, and that they have tested SAHA before with great results on tumors, but this time they are testing how the chemo reacts with radiation.  She told us that the SAHA alone has had great results against tumors, and this is the first time that they are testing how well it works in conjunction with radiation.  If she gets adverse affects from the chemo, then they will lower the dose (from her 3.3mL current dose).  If it continues to have a negative impact on her, they will discontinue the SAHA during the duration of the radiation.  After the radiation then, they would put her back on the SAHA at what they know to be an affective dose for the year.  We are really excited to get this started!

They gave us some new medications for Abby, one for nausea, one for her stomach to keep her from getting nauseous, one for any diarrhea, an antibiotic to keep her from getting a form of pneumonia, and a prescription mouthwash to help her mouth and throat from sores from the chemo.  Luckily, the nausea medicine, according to Abby, tastes like cherry soda, and the chemo tastes good too!  That will make taking medicine much easier.  I made sure that Maegan was on the other side of the house when I got the chemo out and into the injector, and then I would not let her get close while I gave it to Abby.

We are feeling optimistic and energized at this point, knowing that we have an army of angels on our side fighting with us.  Abby is very excited for her party on Sunday and we just thank God for the little miracles that he shows us and gives us daily.

Abby's therapy is scheduled for 7:30 am tomorrow and should only take about 20 minutes to complete.  Then it will probably take around an hour for her to wake up from the sedation, and then we will come to Grandma and Grandpa's house to pick up the other little girls, and head home for a couple of days.  Please keep my Abby in your prayers!  If you saw the news story on her, you have seen how strong and brave she is!  We know that it is from the power of prayer!  

Fortune Cookies Tell All!

From Jon:
We had Chinese food for dinner and Abby and I got really good fortunes!

This is my fortune. Please click on the fortune cookies.








This is Abby's Fortune.



I'll take these fortunes!


Create your custom cookie at bigoo.ws

Picking Up Chemo Treatment

From Maegan:

On the way to St Louis to pick up Abby's chemo and then she will have her first treatment tomorrow morning. Please keep her in your prayers!

KFVS 12 News

From Jon & Maegan:

We are awaiting the arrival of KFVS 12 News! They are going to interview Abby and Mary-Beth (Happy Birthday Girl). I'm guessing that the interview will be on the evening news tonight. We'll have to see if we can watch the news on the Internet because we will be in St Louis. Let me know how it is!

Update:

Tonight at 5:00, on KFVS 12, Abby makes her TV debut!!

 

You can watch the news HERE. <---- Link fixed.

 

Happy Birthday Mary-Beth!

Mary-Beth's New Birthday Outfit

We love you and hope you have a GREAT BIRTHDAY!!




Love,

All your family from Missouri, Utah, Nevada, and everywhere else!

Mood Swings and Wheelchairs

We could definitely see that Abby is taking her steroids.  Talk about a moody little girl.  I wasn't expecting a teenager at age four.  We had a good day in the morning, but then after Mary-Beth returned home from school and we gave her some birthday presents, the attitude began.  She started screaming that she wanted her present, and then when we told her that we were celebrating Mary-Beth's birthday and it was Mary-Beth's day for presents, she stormed off and slammed the door yelling that she wants a present.  So we let her "vent" for a while, but when she continued slamming the bedroom door, Daddy had to put on his big boy voice and stop it.  She didn't like it but eventually stopped and came out and pouted while Mary-Beth finished opening her presents.  She started to get better when the wheelchair delivery guy showed up and brought her temporary chair in.  I'll put a picture of it up tomorrow, she loves it!  She's really excited that hers will be pink!  Then, the drama continued....

We left to take Mary-Beth out for her birthday dinner as soon as the wheelchair guy finished.  Abby got upset with me AGAIN because we didn't take her chair with us. The thing with this chair is that its about 50-65 pounds, the entire chair can recline back, and it has the extra wheels on the back so it can't flip backwards. So for now, getting that sucker in and out of the house is gonna be a bear, especially when you put a 58 pound little girl in it!  She didn't realize that I left it at home until we got to Olive Garden and we handed her the walker.  All I heard for the next 15 minutes was a pouty voice saying "I want my chair".  Then the salad showed up and she got into a better mood!

Mary-Beth's birthday dinner was very nice.  She got a nice new outfit as well as a digital camera from Grandma because she loves to take pictures, and she's pretty good at it too!  

Tomorrow morning we are doing an interview with Holly Brantley of KFVS-12 at 9:30 am.  After that, we are heading up to St. Louis to check in with and fill out some more papers for Abby's chemo.  They are then going to take some blood from Abby from the broviak tube which means No Pokes!  We are then going to my parent's house and will then take Mary-Beth out with my parents for her birthday dinner (part two!) and our presents for her.  Then Friday morning at around 7:30 am we will take Abby in for her first treatment.  

Some of my prayers were answered today by some of my friends here in Oak Ridge.  I had been stressing about getting a wheelchair ramp in so that we can get Abby in and out of the house without having to dead lift her every time.  Some of the dads from Mary-Beth and Abby's school said that they want to build her a wheelchair ramp this weekend for us.  What a blessing friends are!  I thank God everyday for our friends and family who continually find ways to surprise us with their generosity and love.  It makes me speechless and amazed.

Maegan's Car

This is the new decal that is on Maegan's car.  Jon has plans to get one for his car too.  What a cute idea!

Birthday Dinner & Abby's Wheelchair

We are at Olive Garden for Mary-Beth's birthday dinner! It's crazy that she'll be 7 tomorrow!!  Abby got her wheelchair today and she loves it! It is pretty cool. Bad thing is that she's fussing because she wants her chair and we didn't bring it. 

Mary-Beth's Birthday Dinner

Getting ready to go out for Mary-Beth's birthday dinner! She choose Olive Garden for her dinner which I am good with! Abby's anxiously awaiting the arrival of her temporary wheelchair. Her pink one should be here in about a week

Daddy Daughter date!

Abby and I had our Daddy-Daughter date today and we had a great time!  We started off by dropping Mary-Beth off at school in the ole’ Geo Tracker with the top down and wind howling!  They love that!  Then, it was just me and Abby and we went into town for my doctors appointment.  The nurses and staff at Dr. Crist’s office are the best!  They were waiting for us to get there and as soon as we did they called Abby back there with them and gave her big hugs and asked how she was doing.  They then gave little presents to us for all of us!  Abby and the girls got coloring books, some candy, crayons and lots of stickers.  Abby was delighted with this and I then put a little purple smiley face sticker on her nose!  They also had a goodie bag for Maegan and I with a bunch of puzzle books and some pencils.  These will come in very handy throughout the next six weeks!  Abby then told them that we were going on a Daddy-Daughter date to the mall.  They then pulled out some money and gave it to Abby to buy something for herself at the mall.  She was super excited about this!!

The next step was to the Police Station where Abby was greeted with open arms and big hugs!  All of her buddies in Records were so happy to see her and she was elated to see them!!  We then walked through the department saying hello to everyone we could and Abby getting showered with love and support.  Abby got to meet the Chief of Police as well and we both thanked him for all of the support that the Department has shown not only to me, but to our entire family during this time.

We then made the journey to the mall where Abby wanted to ride the carousel.  I couldn’t convince her that the carousel was at the mall by Grandma and Grandpa Jensen, so we walked (I carried her on my shoulders) around the mall, and then went into the store Justice.  Justice had been highly recommended by several people at work who said that it was the place that  a young woman such as Abby should shop,  So we went in and Abby immediately saw a glittery bag and said that she wanted that .  She then saw two necklaces that were a big blue and pink heart, one with a tag that said “Best”, and the other saying “Friends”.  Abby said that she wanted those so she could wear the pink one and give the blue one to Mary-Beth since she is her best friend.  She then found some horse necklaces that she wanted as well, so she got those and then used her money to buy them (of course daddy covered the overage).  By this time, Abby was getting worn out and so were my shoulders, so we started towards the doors.  As we were walking through Barnes and Noble, she wanted to get a couple of books, so daddy caved in again and she got some princess books and then wanted to get Mommy some Godiva chocolate (her favorites).  How can I say no to that!  And yes, when it comes to my girls, I am a pushover!

On the way home we got some ice cream, and found out that Abby was going to get a fitting at 1:30 for a walker and, if needed, a wheelchair.  She was excited about getting those because she told me that “my legs get tired fast daddy”.  I hated hearing those words knowing that my daughter was going to need a wheelchair at least part of the time and a walker the rest.  Especially when she wants to dance so much.

Once at home, the princess took a nap and then went to her fitting with mommy while Emily and I went to pick up Mary-Beth from school.  We had a good time, and Abby and Mommy came home a little later  with a walker for Abby.  Abby was very excited that she could walk by herself easier now and wasn’t getting as tired.  She then told me that she was getting a pink wheelchair where the seat could recline back!  She was so excited about that, and I immediately started thinking of ways to put a ramp on the deck and make the garage and driveway more wheelchair accessible.  Steps on the deck and a gravel driveway are not wheelchair friendly, so daddy  has a new chore to work on. It will give me a outlet, so it will be fun to do.

We then had some visitors and then Abby and her sisters had to get to bed so that they could get their rest.  Only a couple more days until treatment starts, so we want her as strong as possible heading into this so she can be “kick the monster out”!!  We will do it to, and thanks to everyone that will be there with us step by step beating this monster.  Keep the prayers coming!!  We do believe in miracles!!

My Dates

Abby and I had a good day together today.  Maegan went into town today for her doctors appointment for the baby, and Abby and I got to spend a lot of time together and had a great time!  We got to talk to each other and she gave me noogies on my neck giving me goosebumps!

She did get upset when I went and got Mary-Beth from school and then took her out for a mini daddy-daughter date.  Took her out to get some ice cream which she loved!

When we came home Abby was very upset that Mary-Beth and I had gone on a date and she didn't.  I tried to explain to her that she and I were going on our date tomorrow morning.  She did not get much of a nap today so she was very moody.  We definitely can see her mood swings from the steroid medicine.  Then it just gets amplified when she gets tired.

We are both looking forward to our date tomorrow!  We are going to go to my doctors appointment where all of the nurses will love seeing Abby!  They called right after we got up to the hospital just to say that they were very sorry about what was happening to Abigail and that she was in their thoughts and prayers.  I thought it was a very sweet call and we appreciated it!  They always enjoyed Abby coming in with me playing her Dora game on the DS.  After that I am going to swing by the station for a bit and then she wants to go to the mall.  She told me that she wanted to go on the carousel, but that is at the mall at my parents house, so I'll find something for her to do.  She also wants to go to a movie and then get some ice cream.  She knows I can't tell her no, but what can you do?!

It will be a good day and I am looking forward to it!  I am hoping that when we get to St. Louis, maybe Maegan and I can sneak out for a quick date before our marathon begins!

Chemo Rescheduled

Just found out that we will have to go to the Children's Hospital Thursday afternoon to pick up her chemo, and her first treatment is Friday at 8:20am. We'll come home afterwards for the weekend. We are hoping that Friday night we can celebrate Mary-Beth's birthday with her and make her feel special, because she is!  More to come!

Good times

Last night was a good night!  We were able to go to a BBQ at one of the guys from work's house and got to see a lot of the guys I work with and their families.  Abby was well received and loved as well as the rest of us.  She even got a few more presents which Abby always loved.  Aaron and Teresa gave her a princess dress that she wore to church today and showed everyone.  We have some great friends!!

It was nice to be able to sit down with my friends and spend some time with them and tell them how much we appreciate all that they are doing for us and especially my little girl.  They continue to amaze us at what they do for us!

We made it to church this morning for sacrament.  Abby was very excited to see her church friends and to feel the love from her church family.  She enjoyed being recognized from the pulpit saying that they are happy that she was back today.  Abby started to direct music like she always does during the hymns, and Maegan started to cry, which caused almost everyone else to start crying as well.  Abby has been "assisting" the music director for quite a long time, and it was good to see her do it again.  She couldn't stand up for the whole hymn, but her Uncle Bobby sat her high on his lap and held the hymnal for her so she could do it.  Abby got really tired after that so we came on home and will let Abby rest for a while.  We got to keep her strength up so she is as strong as possible as she gets ready to start this treatments!

Home at Last!

After what seemed like an eternity yesterday, we were finally discharged from the hospital!!  We thought that we would be done by late morning, early afternoon at the latest, but we did not leave there until around 7:30pm!  We enjoyed the hospital staff and the good care they provided for Abigail, but it just seemed like they did not want us to leave!

We are finally home and are enjoying our first day back.  I have been trying to convince Mary-Beth and Emily that they need to keep their toys picked up so Abby does not have any obstacles to try to walk past. Mary-Beth is doing pretty good with it, but Emily hasn't grasped the concept.  We tried to sneak Abby's medication in with her apple juice this morning, but she could taste it and we had to bribe her with some candy to get her to drink it.  I believe we are going to just have to make her drink it.  Luckily i'ts not much, so it should not be too bad (I hope).

We are trying to figure out the new sleeping arrangements for the girls.  Abby was on the top bunk with Mary-Beth on the bottom, and Emily in her toddler bed in her room.  Since Abby can't get up or down the ladder anymore, that has to change.  Plus, we don't want Abby to have to walk across the house to get to our room if she needs anything during the night.  So I think that we may use an air mattress in our room for Abby until a better arrangement presents itself.

Something else I also thought of having to change, was possibly having to put in a ramp to the back deck for Abby.  She can walk decent now as long as someone is holding her hand to support her, I'm just worried about during her treatment and we come home and she is exhausted.  They are going to have Abby meet with a therapist and she will probably get a walker and wheelchair to move around in.  I just want to make sure she can get around when she wants to without restrictions.

I am very proud of Mary-Beth for being such a good helper.  This morning, Abby wanted to go back to the bedroom and I was in the kitchen and Maegan was in the dining room, and I look over and Mary-Beth is walking Abby hand-in-hand towards the bedroom making sure that she was walking good and that she could walk.  It made me so happy that she was trying to make Abby feel good.  She had always been so adverse to holding hands with Abby before, and now to see her make the effort is wonderful!

Finally!

From Maegan:

In the car and heading south!

Still Waiting

Still waiting to go home!! I was hoping to be gone by 3:00 at the latest, but I guess the hospital had different ideas. We initially were hoping to surprise Mary-Beth by picking her up from school, then we wanted to at least be there for Mary-Beth's t-ball banquet at 7, but I guess that won't happen either. Maybe someday!

Consent Form

Just spoke with the Oncologists and are getting ready to sign the consent form!! We are excited about this and feel positive that this will work!! After we do some reading they will come back to sign the form and then get ready to head home!

Waiting to go home!!

We are hopefully on the final steps of getting ready to go home!!  We need to meet with the Oncology team to sign the consent form for Abby's chemo, and then get a quick tutorial on care of her broviak line, then we should be ready to go!  Abby is excited to get home and spend some time home.  We told the doctors that we would love to be able to be home in time to surprise Mary-Beth by picking her up from school!

I have to say that we are very happy with the St. Louis Children's Hospital and ALL of the staff here!  The doctors, nurses, specialists, and even the food and cleaning crew all went out of their way to not only make Abigail feel special and loved, but they did the same to us as well.  They have been able to make us feel comfortable here during this trying time, and have tried to keep us up to date with any new situations and details.  I really wish that there was no need for this hospital, but in the same breath I thank God that there is this hospital.

Neck Boo-Boo

 

Mommy makes things better! Abby says her neck still hurts from the incision.

Abby wanted to show you her neck boo-boo.

September is Childhood Cancer Awareness Month

Childhood Cancer Awareness DAY is September 13th!


I'm asking everyone to call their local news stations NOW and suggest that they do a segment in September on Childhood Cancer Awareness Month.  Each state could even spotlight a child in their area who is battling cancer.

Why am I asking you to do this?

Just think about all the publicity breast cancer has received.  It's because of the publicity and the pink ribbon campaign that wonderful people across the country have donated funds to breast cancer research, and women have been made aware that early detection is important. The donations collective over the years have gone to scientists who have worked hard to find new treatments to help save the lives of people who have breast cancer.

Think back to what happened when someone was diagnosed with breast cancer in the 1960s.  Now, think about the progress that has been made with breast cancer treatments since then.  I'm hoping that we, as a country, can help bring an awareness to childhood cancers so that we might be able to raise the funds necessary to further research so that we might see more children's lives being saved.

Wouldn't it be amazing to be a part of saving children's lives?  We may not be able to do the research ourselves, but we can call our local news stations to help spread the word about Childhood Cancer and the need for more research.

Abby is benefiting from a clinical trial which was made possible by people like you who made donations to research foundations like the American Childhood Cancer Organization and the National Cancer Institute.

I've already made my phone calls and sent emails.  I hope you will do the same.  Every child with cancer from now until years from now will be thanking you.







Did you know that…?

• Second only to accidents, CANCER is the number one cause of death in kids.     
• Cancer kills more children than asthma, diabetes, cystic fibrosis, and AIDS combined.     
• Over 12,600 kids every year are diagnosed with some form of cancer; 25-30% Do Not Survive.
• 1 in 334 children will be diagnosed with cancer yearly.     
• 60% of child survivors will develop at least one chronic health condition (e.g. secondary cancers, major organ damage, developmental problems, cognitive delays)      
• Despite these numbers only 3% of the budget from the National Cancer Institute goes towards Pediatric Cancer Research.     
• The same is true of nonprofits. Despite picturing children in their ads & using children in fundraising events, the majority of the well known Cancer charities give less than 2% to Childhood Cancers Research.

WHY IS SEPARATE FUNDING NEEDED FOR CHILDHOOD CANCER research? CANCER IS CANCER RIGHT? Wrong!

• Pediatric cancers are very different from adult cancers in their biological make up and molecular structure. Their causes remain unknown and their treatments are very different.     
• Compared to the understanding of adult cancers, little is known about what chemotherapies work, what cells mutations are involved, etc. for childhood cancers.     
• Not enough is known about what is most effective for children’s cancer, so they are bombarded with high doses of many types of chemotherapies     
• Children get more chemotherapy, for significantly longer periods of time, at higher doses, than adults.      
• There has only been ONE new drug developed in the last 20 years for pediatric cancer, ONE.      
• Childhood cancer occurs regularly, randomly & spares no ethnic group, socioeconomic class, or geographic region.

   Information above  taken from: National Cancer Institute, CureSearch, & Candlelighters. Statistics above refer to the U.S
http://www.workingmother.com/BestCompanies/childhood-cancer/2010/08/the-state-of-pediatric-cancer-research-funding
http://hannahshope.wordpress.com/2009/09/01/childhood-cancer/
http://www.cancer.gov/http://www.candlelighters.org/
http://www.curesearch.org/

Feeding Time

No Feeding Tube!

Abby is still trying to adjust to her new feeding regime.  At this time, she can no longer swallow straight liquids since they are partially going down her wind pipe into her lungs.  So she is on thickened liquids (the consistency of honey) and soft, regular foods.  The speech pathologist and nutritionist also said that to lessen the effect of the weakened jaw and esophageal muscles, that she should eat several smaller meals throughout the day rather than the regular breakfast, lunch and dinner.  Abby likes this idea!

We have been ordering regular meals for Abby from the cafeteria such as soup, hamburgers, tater tots, and cottage cheese.  The trick is to watch her to make sure that she does not take too big of a bite.  If she tries to sneak one in, she usually starts coughing and does not like the effect (talk about your Pavlovian training!).  So she has learned quickly and very well to take small bites and to make sure that she chews them thoroughly and not to rush.  Also with her drinks, after thickening them with some "SimplyThick", we tell her at every drink "Small Sip" so that she does not get too much.   We have found that Abby is picking up on this very well and is progressing greatly in just this short period of time.

Our plan for tomorrow is to meet with the Oncology team again and to sign the consent form to have Abby start the SAHA chemotherapy treatments, learn the proper cleaning and care for her broviak implant, and then take my baby home!!  We are all very excited for that one!  Maegan and I are really looking forward to sleeping in our own bed finally and out of the hospital guest beds/chairs.  But if it meant that my Abby would get better, I would sleep on broken glass or anything else!!  Now, I am going to try and get some sleep!

She made it!

Abby did great on her surgery!  She came out of it and was really groggy for a while.  She came out of it and instantly said that her tummy was hungry and she wanted some Chinese food!  That's my girl!

She finally woke up and shook off the affects of the anesthesia and got some vegetable soup with cottage cheese and vanilla pudding!  She thought that it was very good!!

Shortly after finishing her third lunch, she has to eat several small meals now rather than three big ones, the speech pathologist came in and said that we could take out her feeding tube!!!  She did not enjoy the tape coming off, but was happy to have the tube out!!  We are now hoping to have the IV taken out of her hand and then hopefully be released tomorrow to come home!!  She is excited to do that, and so are we!!

In Three Hours...

They just picked Abby up for her surgery to get her broviac so she should be back upstairs in about 3 hours. Send up those prayers!


If you want to learn what a broviac is, click here.  You will be redirected to another site.

Donations

We greatly appreciate your support of Abby and her family during this critical time!  No donation is too small  Abby is going to kick that monster's butt right out of her head!

The police department where Abby's dad works is helping take care of the donations.  You can write checks to Jon and Maegan Jensen and send them to the police department.

Cape Girardeau Police Department
ATTN: Sara Nenninger
40 South Sprigg Street
Cape Girardeau, MO 63703

Hurry up and wait

Good Morning!  Abby slept really well and we were able to talk to Mary-Beth before she went off to her first day of 1st grade!!  She was very excited!  Abby was  a little upset after talking to Mary-Beth because she wants to go to school as well, and will have to wait at least until her treatments are done.  We appeased her by telling her that we could go by her school next week while we are home so she could say hello to her teacher and then say hello to her classmates.  That made her happy.

Our plan for today is to hurry up and wait to get her broviak tube put in.  They didn't have any open slots in the surgery schedule, but they said that they could work her in hopefully sometime through the day.  So, Abby is on No Food or Drink until after her surgery, and she does not like that!  She had a good dinner last night and they kept the feeding tube on until 2am when they had to turn it off.  They reconnected her IV so that she could stay hydrated.  Abby does not like being connected to the tree, and neither do we!

When we head back for Abby's surgery, they said from the time we leave the room until she returns should be around 3hours.  So hopefully we can get her in soon so that she can rest well and we can go to the Garden again!  We will keep you updated!

Meetings

I think that we have met with nearly all of the doctors in this hospital today!  We've met with the Oncology team, Radiation Oncology team, Nuero surgery team, General Surgery team, Anesthesia team, nursing staff, support staff, and about 100 others!  But, that means we are one step closer to getting this "monster" out of my baby's head!  Abby's big concern is whether or not she is getting an IV put in with every doctor that comes in.  Luckily, when they put her under for her scan this afternoon, they put in her IV for her next surgery which is HOPEFULLY tomorrow to put in the broviak tube.  This tube will be a small tube that will be put into either the jugular vein of the sub-clavicle vein and then ran through the vein to right above the heart.  The tube would then be ran under the skin to a point on the chest where it would come out and about 2inches of tubing would be exposed.  We would then have to be taught how to clean and maintain the tube to keep it from becoming infected and also how to clean the tube part as well.  We are also hoping that the feeding tube will be able to come out before we head home, but that is still not sure.  The nutritionist was wanting to do a calorie count on Abby to make sure that she is getting the proper nutrition, but since she was cleared to eat some foods last night, she went to NPO which pretty much means no food or drink orally this morning, and then could eat dinner, then she is now NPO until we find out when we get the surgery tomorrow.  That surgery is going to be a "squeeze in" so hopefully it is done early.  

We are excited and a burden has been lifted to know that we will be home with Mary-Beth for her birthday on the 19th!  We were worried about how to give Mary-Beth her party that she had been planning back home while Mom, Dad, and sisters were in St. Louis.  So thankfully we can be there with her and we have awesome parents who are taking care of our girls while we are focusing on Abby.  Maegan's parents are taking Mary-Beth in so that she can start school tomorrow (1st Grade!!!) and my parents are watching Emily for us.  Emily is going to wear Grandpa out, but he loves it!!  Now, you figure in all of the love and support that we are getting from family (notice I didn't say friends, you are all truly family!) we are truly blessed!  We defiantly thank God for our blessings and for His hands to care for Abby!

Hopefully on tomorrow's post, I will be able to tell everyone when we are coming home, and like I've said before, please come out and visit Abby!!  We have told her of the love and prayers from everyone, and I would like for her to associate faces to that love.  We are also happy to know that she will be at the benefit dinner that is being put on for her and she can see the outpouring of love for her!

A Coloring Page For Princess Abby

Being Released

Our beautiful Princess Abigail!

From Maegan:

Sorry it's been so long. We spoke with the Oncology team yesterday and we are going to be part of a clinical trial for her chemo treatments. We are going to treat this monster with radiation and chemo for 6 weeks and then chemo for 1 year after.

 

Looks like we will be starting these treatments on Mon the 23rd. In the mean time when we get released from the hospital we can come home until the treatments start. Things are lining up and we're going to get this show on the road!!

 

Abby's Scan

From Jon:
Abby just got out of her scan and is still a little groggy. She's coming out of it well and is really wanting to eat!! She will probably get a broviach (sp) tube put into her chest for her chemo medicines and also for giving blood samples twice a week for the next 15 months! Also it is sounding like Abby will start therapy on Monday, August 23rd.

Abby's Mask

From Jon:

Abby will be heading back to have the fitting for her mask that she'll have to wear during therapy. They are going to sedate her and run a simulation to make sure they can focus the radiation and chemo on the most effective area for the best results. She will go back for that at 11 am and I'll keep you posted!

Home for the Weekend

We are hoping to bring Abby home this weekend! Abby will probably be starting treatment on Monday and the doctors encouraged us to take her back home!!  We are hoping to be released on friday and then return Sunday evening to prepare for treatment Monday morning.  So please feel free to stop or call over the weekend, we would love to see everyone!!

Meeting with the Oncologists

Maegan and I met with the team of Oncologists this afternoon, headed by Dr. Rubin.  He was able to sit down with us and discuss with us the plan for the chemo.  He went on to explain that for Abigail's type of tumor (the technically full name being Diffuse Intrinsic Pontine Gliomas -DIPG) the actual treatments are very thin.  He then went on to explain that the best thing for Abby's tumor is a clinical trial of an experimental new drug for cancer which is used in combination with radiation therapy.  The name of the drug is Suberoylanilide Hydroxamic Acid (SAHA, Vorinostat) which will be used at the same time as the radiation therapy, and then be continued for one year after radiation.  Abby is to be in Phase I for the SAHA.  With this, the goal is to find the highest dose of Vorinostat that they can give safely during therapy.  There will only be between 9-15 patients taking part in this part of the study.  The reason for this clinical trial is that SAHA has been effective in other types of tumors, but has not been approved by the FDA yet.  The goal of this is, to basically improve the effectiveness of the radiation therapy.

The way the explained it to us was that each set of  genes was built in with, in effect, genetic on/off switches. When a group of cells get together at conception, the cells switch on certain switches and leave the others off, resulting in us.  With tumors, and especially brain tumors in/on the brain stem, treatment options are really limited.  SAHA is designed to turn off the genetic "restore" switch that is within the tumor.  Radiation is designed to kill and shrink the tumor.  The problem is that radiation alone just hinders the growth and is temporary.  SAHA is designed to turn off the "restore" so that when it is killed by the radiation, it stays dead and gone.

We were told that Abby should not have too many side effects.  The expectations are lack of energy, sleepiness, nausea, and possibly vomiting.  Our doctors, including Dr. Limbrick, said that they will be closely monitoring Abigail to make sure that there are no serious adverse effects from the treatment.  

They all seem really optimistic of a positive result from this treatment.  Dr. Limbrick told me in private later that if his child had this type of tumor, he would feel comfortable putting her into the trial.   That meant a lot to us.

We have prayed about this and feel that the Lord has timed all of this so that a) Abigail would be covered by insurance when this manifest itself, b) that we were close enough to St. Louis Children's Hospital to come here where these doctors are all together to tackle this problem, and c) that this clinical trial was set up exactly at this time so that my Abby could be a part of it.  We have known from the very beginning that Abby IS going to beat this thing, and a your faith and prayers during this time are the main reason for this!!  Keep praying and keep the faith!!