It's Time Again...

October 29, 2011

There will be a 1 mile charity walk followed by Kid's Olympics, food, activities for the kids, car show, rc boat show and a live band. All money raised will be donated to the Pediatric Brain Tumor Research at Lucile Packard Hospital at Stanford University. They are making huge progress in finding a cure for Diffuse Intrinsic Pontine Gliomas.

Check back later!

A Good Friend of Abby's & Her Family

Hi, this is Cindy, Clare's Mom.  There are no words to tell you and Jon how sorry we are that Abby is no longer smiling and crossing her eyes for us.  While we are glad that Abby is finally no longer suffering, we will miss her.  We keep your family in our prayers; I cannot imagine your heartache. If there is anything we can do, please let me know!

 

Clare was distraught when I told her of Abby's passing.  We were hoping to visit you in July, but, after we returned from Texas, Clare was immediately admitted for her chemo infusions.  Two days after her discharge, her oral chemo levels were so elevated that we were back in the hospital.  She ended up in the ER and being hospitalized three weeks in a row due to dehydration from the toxic chemo levels.  (They think they're getting it under control, and we are so ready for it to be under control!)  We are now looking for an opportunity to come visit you and give you the hugs we wanted to share with you in late July. 

 

 

Abby is always in our hearts, and we talk about her all the time.  This past Monday, Clare was interviewed for KSDK's Show Me St. Louis' television show.  As she mentioned Abby in the video, I'm passing along the link to the interview:  http://www.ksdk.com/news/article/272005/78/Pedal-the-Cause.  (Children's Hospital selected Clare as an honoree this year for the Pedal the Cause fundraiser.  Their team is SLCH Team Clare!  She's even on their website now: http://www.stlouischildrens.org/content/pedalthecause.htm and http://www.stlouischildrens.org/content/ClaresVictoryDance.htm.)

 

We're off to the clinic to see if her counts are up enough for her last chemo infusion admission. I'll get in touch with you to coordinate a good time for us to come down to see your family.

 

You're always in our hearts...

Cindy

 

Jon and Maegan wanted to share this letter with you.  Clare and her family have been good friends to them.  Please remember to pray for Clare and all the other children who are fighting cancer.

 

Abbypalooza!

Mark it on your calendars . . . Abbypalooza 2011 will take place October 29th!!  For more details, click on the tab at the top.

They Say It's Mary-Beth's 8th Birthday!

Get One At - Birthday Comments

Love,

Your Aunts, Uncles, and Cousins across the US!

Benefit for Trace

Hi Everyone! A young boy, Trace from Bell City, has been diagnosed with Hodgkin's Lymphoma. There is a benefit for him at the Wappapello VFW this Saturday from 4 to midnight. There is a dinner, dance, and silent auction. Brian and I are going and spending the night. If anyone wants to go with us you are more than welcome. LET'S GET THIS BOY CURED!

From,
Mary - Abby's Grandmother

Abby's Celebration of Life

This is just a short message to thank everyone for celebrating Abby's life with her family. Her services were very nice and hearing the children sing I am Like a Star Shining Brightly and A Child's Prayer was very touching. Thanks to everyone who had a part with organizing this celebration. After the services we met at the graveside and all the children released balloons.

Abby's fight does not end here. We are praying for pediatric brain tumor research to progress and to find the right combination of drugs to help these children finally see remission. We also are praying for every child and adult who is suffering from cancer.

Let's find a cure!

Balloon Release

Friday, July 29 7:00p
at Oak Ridge T-ball Field, Oak Ridge, MOhttp://www.blogger.com/img/blank.gif

Friends and family of five-year-old Abigail Jensen who lost her battle with cancer will be releasing balloons in her honor.

Update: Photos of Balloon Release

Abby's Final Moment

Sunday, July 24, 2011 8:06am. That is the time that my little Abby received her angel wings and returned home to her Heavenly Father.

We woke up Sunday morning, and Abby had slept really well that night. Maegan came into the living room and came in and touched Abby’s arm to say good morning. When she touched her arm, Abby jumped. We think that Abby’s vision may have gone during the night. Abby calmed down when Maegan started to talk with her, but Maegan noticed that her coloring looked very pale. Abby then started to breath very roughly and loudly. Maegan then put the thermometer under Abby’s arm, and it shot up to 102 almost immediately. It finally stopped at 105.9, but her legs were cool to the touch. We gave Abby her medicine and then I picked her up and sat with her on my lap. I cradled her in my arms, and we sent Mary-Beth to go get Grandpa Miller so he could check on Abby’s condition. Abby sat in my lap, and looked up into my eyes. By this time, Abby began her “fish-breathing”, big gasps of breath. Maegan and I both looked her in the eyes and told her that it was okay to go. I told her that Heavenly Father and her brother Curtis would be coming shortly, and when they did that it was okay for her to go running to them. Abby looked deep into my eyes with her bright blue eyes, her eyes as clear as ever, and then her pupils got real large, and she looked up, and then she was gone.

We were very fortunate to have my parents down at the house when Abby passed on. They had just arrived and were getting ready to take Mary-Beth and Emily to church when everything started to happen. Right after I put Abby on my lap, Maegan’s parents arrived as well. So Abby was surrounded by love.

After Abby passed, her spirit stayed with us for around an hour. The living room was bright and cheerful, and you could almost see Abby with her long hair and twirly dress. The Hospice nurses were here and after a little while, asked if they could bathe Abby before the funeral home arrived. I then placed Abby on her bed and the nurses very gently bathed Abby. I noticed that they were so sweet with her, treating her so lovingly, even shedding some tears for her. When they were finished, I picked Abby back up and put her back on my lap. By this time, we could tell that she was enjoying her eternal reward, dancing with her brother and receiving her mansion above. We did ask Abby, before she passed, to make sure she paints us some rainbows and look after us, and to say hello from time to time.

I miss my Princess dearly. Maegan and I will do well for a while, and then something will spark a memory and we will lose it for a while.

Maegan and I went out on Monday and made the arrangements for Abby’s funeral and visitation. I never realized how expensive funerals are! Luckily, we have wonderful friends and family who have helped out with the expenses to lessen the financial burden.

I just pray that there will be a day when cancer, especially pediatric cancer, is eliminated from this world. I hope and pray that Abby’s memory will inspire and strengthen those who are fighting their battles as well.

Abby’s visitation will be on Wednesday, 7-27-11 from 4-8pm at Ford and Sons Funeral home on Mount Auburn, with her funeral on Thursday 7-28-11 at 11am. We will then take Abby to Memorial Park Cemetery where we will lay her physical body to rest. We actually set up three plots, one for me and Maegan, and then Abby and Curtis. Curtis will be brought up and laid to rest with Abby. Then, a long time from now, when Maegan and I return to our Father, our two children who moved forward before us will be surrounded by their loving parents forever.

We have told the girls that our prayers have been answered. It may not be the way that we hoped the answer would come, but Abby has beaten her tumor and is happy, healthy, and cancer free! I am so happy that Families Are Forever, and that Abby is now and forever my daughter, and Curtis is my son, forever. I thank God for the time that He allowed for us to be with Abby and look forward to many rainbows that Abby will paint for us. And I know, that I will forever be Abby’s Daddy, and Maegan is always Abby’s Mommy.

I hate cancer, especially childhood cancer.

KFVS Heartland News

News Clip from July 24, 2011

We Love You Abby

 From Jon:

Abby is now dancing and in the arms of our Heavenly Father and with Curtis. She passed in my arms at 8:06am

This is Abby's favorite Primary song.

I am like a star shining brightly.
Shining for the whole world to see.
I can do and say
happy things each day
for I know Heavenly Father loves me.


All your family loves you so much, Abby.

Please Pray For Abby

The hospice nurses say there's not much time left for our little Abby to be with her family.  We ask that everyone say an extra prayer of comfort for them.

We are thankful for all the dinners that have been taken to their home.  If you would like to sign up to take them a meal you can go to this link.  They have a dinner scheduled for Saturday night and Monday night but all the other nights are open
.

Sweet Abby

Abby certainly loves her mom and dad!  This video was taken a few days ago.  Abby and her family had plans to watch Winnie the Pooh but Maegan found a lump on Abby's stomach so they rescheduled their evening.  The hospice nurse came to visit Abby and see if there was anything to be concerned about.  I'm not sure everything that happened but I know Abby did get a massage and some Milk of Magnesia, I think, and the next day the lump was gone.  The doctor thinks it was a bowel movement that needed to pass.  Her bowels have been slowing down and she hasn't been eating as much as she used to.  The good thing is Abby still loves life.  She likes to be with her family, have her nails painted, watch cartoons and movies, and snuggle with her parents.  She is a sweet girl and loves everyone!  If you get a chance, send her and her sisters a card in the snail mail.  It really makes their day.

Don't forget to tell your kids you love them today! 

Just For Abby's Smile BAKE SALE!

Bake Sale Fundraiser for Abby
hosted by Just For Abby's Smile

Saturday, July 23, 2011.
Walmart
Jackson, Missouri
8:00 am - Noon

There will be a lot of goodies being made for Abby's fundraiser.  If you would like to make something please let April Huffman know at Just For Abby's Smile.  She can arrange for the treats to be picked up on Friday night.

Abby was diagnosed with diffuse intrinsic pontine glioma on August 6, 2010.  In a few more weeks it will be a year since the doctors started fighting the tumor.  Research is slowly progressing and one day a team of doctors and scientists will make an amazing discovery on what combinations of medicines will help these children finally see remission.  We pray for that miracle.

Although Abby is no longer able to do much or be awake for very long she still loves the attention from her friends and family.  She likes her princess wand, being able to look out the window, and watch or listen to SpongeBob Square Pants.

Jon and Maegan were not looking forward to calling Hospice but felt it was time.  The Hospice nurses are so sweet to Abby, Mary-Beth, Emily and Sara.  They spend time playing with all the girls as well as caring for Abby's needs and helping their family through this difficult time.

The Jensens have continued to receive so much love and support from their friends, family, and complete strangers.  Countless people have been touched by the love Abby has shown for life and for her many friends.  Her radiant smile cannot go unnoticed.  I know that the entire family on both Jon's and Maegan's side have friends in many states who have been following Abby's story.  These people have never met Abby but have come to love her and continually ask how she and her family are doing.  This not only shows how special Abby is, it shows how special all of you are.  So many people have visited Abby, are saying personal prayers, adding Abby to their church's prayer list,  have brought the Jensens dinners and are continuing to do so. While others are selling cupcakes, quitting smoking, creating t-shirts and car magnets, holding carnivals and bake sales, and making crafts like cute little men out of an empty juice container as a gift for Abby to bring her more happiness.  There is no way I could mention every act of kindness.    Your love and support has not gone unnoticed.  Thank you.

Abby's favorite colors are pink, purple, and red.  She loves princesses and anything girlie.  She likes to play with her sisters, friends, and cousins.  She has an amazing smile and pretty blue eyes.  She enjoys going to Primary at church with her friends and loves her teachers.  She looks up to Mary-Beth and is protective of Emily and Sara.  Abby will hold Sara any chance she gets and fights her parents when they need to take her away.

Abby loves ice-cream and Chinese food.  She likes going to the St. Louis Zoo, Purina Farms, the Pumpkin Patch on Halloween, and to the Magic House.   She really enjoys practicing cheerleading moves with Mary-Beth. Abby is smart.  She can write her name and some other words, knows her colors, can count, and loves to draw just like her big sister.  

Continue to pray for Abby and her family.  If you are a parent of a child who was recently diagnosed, we are praying for you too.  Find happiness in each day!  

Just For Abby's Smile

I'd like to tell you about a Facebook page created by April Huffman.  April is a friend of the Jensen family and is a smoker, or a RECOVERING smoker.   She knows how harmful smoking is to her health and also loves Abby and her family so much that she started a fundraiser to help cover some of the costs the Jensens have come across these past almost 11 months.

April has promised to quit smoking,

which will improve her health and cut the risk of her getting lung or mouth cancer, 

if she can raise $1,000 or more for Abby and her family.  

There's nothing more important than choosing your health over an addiction. What a GREAT gift April is giving to Abby and her family and to HERSELF.  I know that Abby would be heartbroken if April were to get cancer.

The fundraiser is on Just For Abby's Smile Facebook page.   Click HERE to see it.

April has also made custom auto magnets to raise money for Abby.  You can purchase the from April for
$3 each.  You can contact her on Just for Abby's Smile Facebook page.


Thank you, April!

Daddy-Daughter date!

On Monday, Abby and I got to go on a little Daddy-Daughter date! It was a great time for just the two of us. I had a doctors appointment in the morning and we went there and Abby got to see everyone at Dr. Crist's office. We then went to the mall and Abby said she wanted a cookie, so we got her the biggest chocolate chip cookie they had! We then stopped by the Station and visited with everyone there. We then called "momma and sissies" and had them come in and meet us to go watch Cars 2. That was a great morning! At the movies, we ran into some our friends from church and watched the movie with them, and it was nice letting the kids hang out together. That was a good day, and Abby was alert for most of it. We do seem to have some bad days popping up too though.
Abby is, unfortunately, seeming to slip a little further away every day. She is very tired all of the time, sleeping most of the day, and her appetite has decreased dramatically. The other day, Maegan told me that the only things that Abby had to eat that day was a couple bites of yogurt, a few goldfish crackers and a couple pieces of ham for dinner. Using the bathroom is starting to become an issue again as well. Over the past week, Abby will tell us that she needs to go potty, and we'll carry her in there, and she won't be able to go. She gets very frustrated by this, as anyone else would too, I think that makes her tense up which makes it harder to go. Also not helping the case, it is very hard for her to balance herself so she is constantly moving trying to keep balanced, which only makes things harder. I either have to hold her under her arms to help her balance, or I stand next to her and let her lean against me.
Yesterday, she had a couple minor accidents. We think that it happens because she finally gets relaxed on the couch and then realizes she has to go potty and gets a little pee-pee in her panties. Maegan asked her if she would want some pull-ups to put on, and she said that she wanted those so she doesn't have an accident. We let her make that choice, and as of this morning, as best as I could tell, she was dry and she went potty at least once every hour last night. Needless to say, Maegan and I did not sleep well last night, but I was happy that Abby is still wanting to make the effort to get to the bathroom, even though she doesn't go every time.
On a sad note, I spoke with my Assistant Chief, about using the Department's Honor Guard for Abby's funeral, and he said that they would be happy to do that for her. That will be a nice touch.

Another headache

We had a wonderful visit with my brother Bobby and his family! It went by way to fast though.
The good news is that the shunt that was placed into Abby's brain has significantly decreased the pressure and fluid build up on her brain! On Wednesday, Abby was complaining of headaches and was acting very tired, so Maegan called up to St. Louis Children's Hospital, so we could try to figure out the headaches were due to the shunt possibly having moved or if it was not working. They asked Maegan if she would Abby up so they could do a scan just to make sure the shunt has not moved. They got up there and they took Abby back and did a scan. They said that the fluid levels on Abby's brain looked very good, and that the tumor was probably what was causing the headaches. We just wanted to make sure that if Abby's pain was due to something that we could control, that we got it fixed. We are still working on fixing the tumor, but until then we can only pray.
Maegan and I decided that we are going to move Abby into our bed at nights from now on. This way, IF something should happen during the night, we will be there with her and if she needs to use the bathroom, it is not as hard on my back to pick her up and carry her to and from the bathroom and then hoist her up into her bunk bed again. She enjoys sleeping in our bed, and she is a great snuggle-buddy! We also cleared out a space in our room to put a twin bed for the other girls to stay in our room if they want to, so they do not feel neglected or left out. (Plus, this way, when they all pile up in our bed, I can sneak out to the small bed and not get kicked and laid on!).
Since Abby is in our room a lot now, Maegan and I decided to get a nice television to go back in our room. So, as kind of an anniversary present for Maegan and myself, as well as for the girls, Emily and I went to Best Buy while Maegan and Abby were in St Louis and picked up a 32" television and got a good deal on a blu-ray player with surround sound system included! I got it all set up for when Maegan and Abby got home, and they were all impressed! So was I!!
Yesterday, Maegan and I went out for our 11th wedding anniversary and my parents came down and watched the girls for us while we went to Ray's of Kelso to eat. I had called ahead and had them get a dozen roses for Maegan and have them waiting on our table. We had a good evening, and then came home. We then got the girls all tucked in, and we went to bed. At around 3, I woke up to Emily kicking me in the back, sleeping behind me! So, I moved myself to the couch and finished my sleeping out there.
The girls are all having fun with Maegan's brother, uncle Bryan, who is here with his girlfriend Tonya from Florida! They will be here for a few days, and it is good to see them again! We last saw them when they drove 6hours to the Give Kids The World Village during Abby's Wish Trip.

Hydrocephalus and Brain Shunts...

(Note... I'll add pictures later.)

We have been so excited for the arrival of Uncle Bobby and Auntie Colista and our cousins! They arrived to St Louis on Sunday, and Abby was sitting in Grandpa's recliner when they pulled up. She heard them pull up in front of Grandma and Grandpa's house and jumped out of the chair!! I'm glad I was close, or else she would have went splat! I was able to grab her and helped her outside to welcome her cousins! She was so excited to see her cousins, and aunt and uncle!!

Their joyful arrival was sidelined by the return of Abby's headaches and early morning vomiting. We were unsure if it was just a bug or if it was a sign of her tumor. They have told us that the tumor will, as it swells, cause severe headaches, sleepiness, nausea, and irritability. We have noticed Abby getting all of these symptoms. Sunday and Monday, Abby woke up with major headaches, and would throw up. So Monday, Maegan called up to the hospital and told them what was happening, and they had us bring her in for a cat scan. So, while our family went to the zoo and entertained the kids, we went and got a scan in and then waited for the results.

We then got up to the 9th floor and met with Abby's doctors for a little, and they had us go down to the 4th floor and meet with Dr. Limbrick, Abby's neurosurgeon. They did tell us that there was a lot of fluid backed up on Abby's brain, and that the ventricles were congested, not allowing the spinal fluid to flow, which builds up the pressure on her brain. This causes her headaches and vomiting. The technical term hydrocephalus. (I don't know if this is the correct spelling, but it was my best effort!) So they met with us and discussed the options of either putting in a shunt to relieve the pressure and move the fluid through the shunt into her stomach cavity. But since she still gives us glimpses of Abby, and isn't just sleeping ALL the time, we agreed with the doctors that the shunt is worth it for Abby. The other option was to do nothing and just let the fluid build up which would cause her to sleep more, and then when the tumor hits the breathing control of the brain, she would fall asleep and just stop breathing. That was not an option for us!! We know that as the tumor grows, that she will just fall asleep and stop breathing, but we want to enjoy every second that we have with our Abby!! We know that everyday is a gift, and we want to enjoy them to the fullest! We feel that this option will let us enjoy her, and more importantly, that she can enjoy the time that she has left.

So this morning, Maegan, Aunt Colista and I brought Abby up to the hospital to have her surgery. Grandma Mary and Aunt Amber met us up here, and we took Abby in for her surgery. It was hardest on Aunt Colista today, just because she has not seen Abby like this before. I hate to say it, but we have seen and been through this before so we knew what to expect. I know our first time was very rough as well, and I think Aunt Colista held up very well.

They had to shave a section of Abby's hair, on the right side from the temple area all the way around to the neck behind her ear. They left a patch above her ear that we may have to cut, but we'll have to see what Abby wants to do first. So they put the shunt in, and when her hair grows back in, you won't be able to see it at all. It goes from the front of her head into one of the ventricles in her brain to allow the fluid to drain from her brain to her stomach cavity where it will be absorbed by her body. There is a valve on her head that keeps the fluid moving out and not back in.

After her surgery, she was very groggy and not in the best of moods. As time passes, Maegan and I can see progress! Her eyes are clearer and focused and Abby hasn't complained of any headaches! Dr Limbrick came in and said that there was a lot of pressure built up when he put the shunt in, and we should be seeing positive results almost immediately, and we have been!

We will be in the hospital, room 12East12B, and hopefully we will get to go home tomorrow afternoon, or at the latest Thursday. We are hoping for tomorrow so we can hang out with our cousins more before they have to leave!

Abby is doing good and it is good to see her personality and silliness returning! Everyday is a miracle and we definitely thank God for everyday he blesses us with her, and all of our girls!! Even through this entire ordeal, we are extremely blessed!!

Every day is a miracle!

Where do I begin?! Abby is continuing to show so much strength and character, she just blows my mind! Over the past few weeks, we have noticed some negative effects from the tumor with Abby. Her walking is almost completely gone now, and even with help walking, she is mostly throwing her legs out in front of her than walking. She has compensated by learning how to scoot herself off of the couch and onto the floor, and then very slowly crawl around to play with her sisters or to just move. Her spirits are still up and she is an inspiration to me!

Last Friday, while Abby was getting her chemo treatment, she was only able to receive one of the medicines because of a high liver enzyme. They told Maegan, that if Abby doesn't feel like making the trip to St. Louis for her chemo, then to keep her home. If she is playing, or anything else and she doesn't want to come up, they said that it was fine to keep her home and to make her happy. It hurt to hear that, and the doctors did say that in no way are they giving up on Abby, and we never will, but we just need to make Abby happy. That is the most important thing.

Before reading the next little bit, please remember that we will fight tooth and nail to help Abby get better and giving up is not in our vocabulary! I'm not trying to be offensive or defensive, but when you keep reading, you'll see why I felt it necessary to put in that disclaimer...

On a sad note, (and yes, I'm tearing up just typing this), Maegan and I have had the discussions on keeping Abby home or at the hospital. We have decided that Abby will be home where she is comfortable until the end. As things get closer, we will move her into our bed (because nothing is more comforting than being in mom and dad's bed!). We'll also move a spare bed into the room for the other girls to sleep on, because we don't want them to feel left out or neglected. We feel that Abby will be the most comfortable at home surrounded in love.

On another sad note, we've also decided that we want Abby and Curtis to be together. Grandma Mary spoke with the funeral home and they said that it is possible to bring Curtis up, and then Abby and Curtis can be together in the same plot. You don't know how hard it is to type this right now, or how hard it was for us to have this conversation.

With all of the sadness out there, let me share some positives! Everyday is a miracle and we are trying to treat them as such! Abby and Mary-Beth are both on t-ball teams, with Mary-Beth being on a coach pitch team. Abby just loves being on the team and smacking the ball! She lets me help by pushing her in her stroller around the bases! She also enjoys being in the field too, and the coaches, players, and parents, all go out of their way to let Abby really be a part of the team! She gets ground balls, catches the ball, and throws the ball! I offer a little assistance, but to see her face beam is awesome! Her next game is this evening at 6pm and she can't wait! When we showed up to the first game, there was a new t-ball bat, glove, and some t-balls waiting for her that a new friend of ours had got for her!

On Memorial Day, we all went to our church's picnic, and Abby was having a blast throwing water balloons and playing with the other kids in the water! The primary children are inspiring to me, as I watched them fill and tie off water balloons for Abby, and then let her throw the balloons at them. It was a really good time for all of us!

A few days later, Maegan was outside with the girls cleaning the silly string off of the deck from their silly string battle (because grandpa Brian and I had spent all morning power washing it) and had a water spraying good time! I looked outside and I see Abby in her stroller with Maegan spraying her down and Abby just laughing and loving every second of it! Those are the types of memories that will last forever!

We are all looking forward to Uncle Bob, Auntie Colista and the cousins coming out next week!! The girls, and all of us, are so excited! It will be a good time for all of us!

Fun Times

We had a great time at Myrtle Beach, staying in the Wyndham Resorts right on the beach! The fresh ocean air, the beautiful views, and just being able to relax on the beach with my girls and watching them all play in the sand!! Thanks so much to everyone who helped to make this trip possible!!
Abby, and all of us, really had a great time! When we arrived, we threw our bags into our room, and then hit the beach! We pushed Abby in her "stroller" down the ramp to the beach, and then I was able to help her walk on the beach, and, as the picture shows, she loved it!! We all got onto the sand, and the first thing that the girls did was lay down and start to make 'sand angels'! We then walked into the ocean for the first time, and all of the girls instantly fell in love with the beach and the ocean!
The next morning we woke up and instantly went to the beach to start to build sand castles, search for sea shells, and relax! We had a great time, and the girls are definitely 'sand bunnies'!! The girls all got to play in the ocean, jumping into the waves. Eventually, all of them got splashed by the ocean with some water going into their mouths, and all of them said that they did not want to drink that water!! It's too salty!! Emily decided that she did not like the waves hitting her and "splashing her".
I'll do a new post about Medieval Times next!

Moe Family Pixs Coming Soon

I had to put this on the blog. Thank you Holubek Photography for taking their family pictures!

Myrtle Beach Pictures Coming Up!

I'm working on getting pictures of their trip to Myrtle Beach on the blog for everyone to see.  I'll be posting more pictures on this post as well so check back soon!

Dinners For The Jensens

If you would like to help the Jensens with dinners at any time please go to this LINK to pick a date.  In doing so, everyone will be able to see what dates have been taken and that someone has already planned to bring them lasagna that week. (Just found out that Abby does NOT like lasagna!)  Please note that I did not include a real phone number or address because it's on the internet.  You can contact Sister Wheeler, Jon, Maegan, their family, or friends for more information.


Their family, as well as all of their extended family that doesn't live close, thanks you so much for all your love and support.  They are excited about their trip to Myrtle Beach and for the family pictures that have been taken and will be taken.  Their family has been so blessed by all their friends.  Keep their family in your prayers and if you're reading this today, May 5th, please tell Emily Happy 3rd Birthday!

An extra big thank you from the Jensens and Millers outside of Cape Girardeau!
Thanks, Emily, for telling me about that website!

Starting Over

Abby had her latest scan on Wednesday and on Thursday our doctors called and spoke with Maegan after they all met together to discuss the scan. They told Maegan that the tumor has grown “significantly”, and is no longer isolated to the pons area of the brain. The tumor has started to grow into the other regions of Abby’s brain, which would explain her brain ignoring her left side. So, they took Abby off of the chemo that she was on, since obviously it was not working. Our next plan of attack, which the doctors said was pretty much our last and only option, is to try the two chemos that is designed to block blood flow to the tumor to keep it from growing. They said that they have had good success with this chemo, but that it does take a few weeks to start taking effect. Maegan asked the doctors if this should be a good treatment for Abby, or if we were on our last hope praying for a miracle, and she told Maegan that we are hoping for a miracle. Maegan then asked if we would still be able to take Abby to the beach. The doctor got a little choked up and told us to get her there as soon as we can.

We pulled Mary-Beth outside when we found out and told her what was going on, and told her that we would like for her to spend as much time with Abby as she can and to have those good memories with her, since we don't know how much longer we will have her for. It hurt so much having to tell Mary-Beth that Abby could... not be with us and killed me when she lost it. Emily is still to young to tell, and we told Abby that her tumor has grown some and that is why we are sad. This just hurts so much.

They have Abby started on a high dose of steroids to help, and we are hopefully since Abby responded so well to the steroids initially. If the steroids are not effective, they told us that Abby could possibly lose the control of her right side within a few weeks. Abby will start on her two new chemo's on May 6th, and they are made to stop the blood flow to the tumor. It hopefully won't have too many negative side effects. Abby will get her chemo every other week in St. Louis Children's hospital.

We are planning on going to the Gulf Shores early after Abby gets her first round of chemo. Some good friends of ours are covering the lodging while we are there. We are truly blessed to have such good friends!
Our goal is to live every day to the fullest, and make each day a great one!

Please keep Abby in your prayers, and pray for that miracle that we need. I'll update again soon! Thanks everyone!

We keep rolling....

I am happy to report that Abby’s headaches have passed, for the most part. Every once and a while, she will tell us that she has a headache, but I think that it is more of her being tired than having a headache.

On the other hand, I am not happy to report that Abby is back in her wheelchair. It is not a full time switch to the chair, but pretty close. Her walking has deteriorated quite a bit to the point that she cannot walk without someone holding her hand and helping her balance. Her left side is noticeably weaker. The doctors tell us that the left side is still strong, but that her brain is not recognizing her left side. If we ask her to grab something or reach for something, she will always go for it with her right hand. If we ask her to use her left hand, she will, but it’s noticeably harder for her to control. When she walks, it looks almost as if her left leg is asleep. She will almost throw her leg out, and then her leg locks out and her knee almost hyper-extends. They have fitted her with a brace for her leg to lock her ankle in place so she can’t lock out her knee. It will probably be here far after her new chair is in, but when she starts walking full time again, she will have that brace to keep her strong.

Abby absolutely loves her pool time physical therapy! It totally wears her out to the point that she can’t walk because she is so tired. The positive part of pool therapy is that she uses her left leg very actively. It has just gotten so hard on Abby to try to walk by herself, and then Maegan has to go out with Abby, who needs at least one hand to hold on to, Emily who wants to hold your hand or be carried, and Sara who is in her car seat. So with Maegan only having two arms, something had to give! So now, Abby will be able to be in her chair, she will put Sara in her chest harness, and Emily will be able to hold her hand, help push Abby, or even sit with Abby, all depending on what Emily wants to do at that time. I am hopeful that in the long run, not only will this be beneficial for Abby, but also Maegan too!

Today, we went to St. Louis for Abby’s evaluation at the Hem-Oc clinic and then go down for her MRI scan since today has been her one month on the new chemo. After meeting with the doctors, they also noticed that Abby has not seemed to make any progress this month, but that she has declined in her abilities. We are expecting that after our team of doctors meets tomorrow afternoon, that they will recommend that Abby gets removed from this trial and they will start to look for something else to try. We made sure that we reminded them that our goal is to help Abby, and so it doesn’t matter if the new treatment option is in Texas, Boston, or anywhere, whatever is the best treatment option for Abby and whatever has the best potential for helping Abby, we will find a way to get her there. The hard part for me personally is knowing that I don’t have enough leave time built up to be able to go with my family and be with Abby full time. I will be there every chance I get, but it won’t be for as long as I want. As long as my little girl gets better, I don’t care what it takes or how much it costs!

We should be hearing from our doctors tomorrow early evening about their recommendations, so we will see what the Lord has in store for us. As soon as we know, I will make a new post!

MRI

Abby is getting an MRI today.  Please keep her and her family in your thoughts and prayers.  Her family will send an update later.

More headaches

Yesterday, Abby and Maegan, Emily and Sara had to come back up to St Louis Children's Hospital for an unexpected trip. Abby had been having her headaches fairly consistently since Monday, and yesterday after her lunch, she got sick all over the car. Maegan called up to the hospital and they told her to bring Abby in to the Emergency Room. They were worried that the nausea was being caused by the tumor putting pressure on the brain, causing the nausea. So I was stuck at work, and Maegan and the girls were on their way to St Louis. So after work, I picked up Mary-Beth from Amber's house, and we went home. First thing this morning, we packed up and came up here as fast as we could! Abby was going to be released this evening, but shortly after we got up here, she threw up again. So, just to be safe, we decided to have Abby stay in the hospital again tonight just so she can get any help if she needs it. They have her on a pain medicine regiment, rotating Tylenol and Motrin every three hours, and then her big medicine, Oxycontin, for the severe headaches. Since we've been up here, she has had a couple of little headaches, but nothing that has lasted very long or caused much pain. So we are hoping that this trend continues!! Since I'm up here, I talked Maegan into going home with my parents so she can (hopefully) get some rest tonight! She definitely needs the rest, especially since she is home with the girls all day, taking care of all of Sara's needs, Abby's needs, Emily's needs, and Mary-Beth's needs. She is a rock, that is for sure! I put a message up on Facebook asking for some of her friends help for Maegan, with either helping with childcare, or just talking with Maegan so she can get some adult interaction. I'm sure they will take care of her! They always do! Hopefully we can get all of Abby's pain and nausea taken care of and she can get some rest so we can get home tomorrow! Thanks for the prayers!!

Back to the hospital

Getting ready to start week three of Abby's new chemo, and things had been doing good. The main side effects that we had been seeing are photo sensitivity (being very sensitive to sunlight) which would cause headaches. The headaches would not bee too bad initially, but have steadily become worse. Today while we were at therapy, it got so bad that Abby had to lay down and cover her head it hurt so bad. Maegan called up to St. Louis children's hospital and told them, and then they asked to bring Abby up so that they can do a CAT Scan to make sure that the ventricles aren't getting blocked. So we are praying that this is nothing major!

She's in!

Abby is now half-way through her first week of her new chemo! We had a little scare when Maegan initially went up there for Abby's EKG test when they tested her urine and said that she could possibly have a UTI. They said that if she had a UTI, then she would be removed from the trial because you can't start the trial with an infection. So, many prayers later, Abby takes the test again Wednesday morning and has not UTI and started the new medication! It consists of 5 small pills that we will need to handle using gloved hands, since it attacks fast growing cells. Maegan will be able to administer this drug since she is no longer pregnant, but we still need to be careful if she gets sick. They had to do a LOT of blood draws on Wednesday and Thursday, but they made it through! She's such a tough little girl! This morning, Abby got her broviak removed and replaced with a port! She was very happy to get that tube out! She called me when she got out of surgery this morning, but she was still loopy, and I'm sure that she will not remember talking with me. Mary-Beth and I are very excited to have the family back together again tonight!!! Can't wait for 5pm to get her so I can head home!!

Two steps forward, one step back...

The picture on the left is from December 2010 and the one on the right is from March 24, 2011.  You can see that there is more fluid and a little more dense now.  There is one spot towards the back that is completely gone and that is good news.

The scan on the left is her very first scan in August, 2010.  The one on the right is from March 24, 2011.  The tumor is smaller than what it was in August but a little larger than it was in December.

Abby had her latest scan yesterday, and we learned what we had figured, her tumor has grown back, but just slightly. Over the past few weeks, we noticed that Abby has been having left side weakness and her walk has been a little off. So we met with the doctors yesterday morning before the scan, and Dr. Rueben also noticed the left side weakness.

So her tumor has grown, but slightly. We met with Dr. Rueben this morning at 11 and he had several phase I clinical trials that Abby qualified for. Dr. Rueben went over them in detail with us, and some were designed to block blood flow to the tumor and block the growth of blood into the tumor. This could take up to three months to happen and show effects. The other trials were designed to block the enzymes in the brain tumor that tell the tumor to divide and expand, and then turn off the part that tells the tumor to survive. One trial would be done here at St Louis Children's Hospital, and the other could be done at St Jude's in Memphis TN. We felt really good about the trial at Children's and we are deciding to proceed with this trial. The blood flow blocker trial sounds promising, and I hate to even think it, but we don't think that Abby's tumor would wait for the chemo to take hold, so we dismissed that for now. We are excited to start this next "chapter" in this battle against the tumor, but we feel we are one step closer to the ending, which is a happy ending!

We also got clearance from the doctors for Abby to play t-ball this summer, and she is really excited for that. She is also very excited to be enrolled for kindergarten! We told the doctors that since Abby is wanting to play t-ball and be in school, that we were hoping to either remove her broviak tube completely, or to replace it with a port that would be under her skin, but they could access to as needed. They told us today that the port should be no problem, so early next week, she will have her tube removed and replaced with the port! That means Abby will be able to go into the pool for her physical therapy, and that we can get started on plans for a beach trip this summer!! Abby has wanted to go to the beach since she was two, so we are going to make that happen!

So, even though we received some bad news yesterday about the tumor growing, we are not upset or disappointed. We are excited to start this next leg of the marathon, and are relying on the promise that we received that Abby will beat this tumor and grow up to be an old woman. Thanks for all of the prayers and as we find things out next week on all of the details of her new chemo and treatment plan, I will put them up.

Spring Fever

Sara is a welcomed addition in our household, and Abby and her sisters are such good big sisters! We just have to make sure that they all get equal time holding Sara, or else we hear about it!

Abby is continuing to do very well! She has started physical therapy in the pool, just her legs for now due to her broviak tube, and she loves it! The therapist did point out that Abby seems to be walking with her toes pointing in, and since she has mentioned that, we have noticed it too. She sent home some exercises for Abby to do to strengthen her leg muscles and hopefully that will help. It has not hindered Abby in the least bit, and she and her sisters are a joy to see playing outside, riding their bikes! I'll try to get some pictures of them playing outside, it is just too cute!

Abby had a haircut recently, and it looks amazing! Its now trimmed to her chin, and they cut off the long patch that was at the back of her head. It really looks good and Abby loves it! It makes her hair not look so thin. Abby's new hair is growing in very well! Nice and thick, and growing fast! She is still upset that it's not growing in pink, purple, and curly. I told her that we can get it colored for her if that's what she wants.

This Thursday, on March 24th, Abby goes in for her next MRI scan. We are both excited and scared! We are really hoping that they will be able to remove Abby's broviak tube! Abby wants so badly to take a real bath where she can sit in the water and lay down and play. Plus, Abby has wanted to go to the beach for a while now, so we are hoping that we can get her tube out by this summer and we will find a way to go to the beach somewhere for a vacation. Abby wants to see the ocean and play in the sand, so we are going to make that happen! One way or another!!

We ask everyone to keep Abby in your prayers, so that her tumor will continue to shrink, and NEVER come back! We can feel your prayers and know that they help and the God is listening and answering them. We also want to say Thank You to everyone for all of your love and support! Thank You does not seem strong enough, but please know that we thank God every night in our family prayers for everyone who prays for us and our Abby.

So Sweet...

Happy Birthday Sara Mae!

{ click to enlarge }

Abby is now a two time big sister, with Sara Mae being born this evening, 3-2-11 at 7:19pm weighing 8.2lbs and 19" long. Mama and Sara are both doing well and the girls are all excited to be big sisters again!

Waiting for Sara

Tomorrow is going to be the big day that Sara will join us! Maegan will be induced tomorrow, so we have to be at the hospital at 5am. The girls are all very anxious to get Sara here so they can love her! We are excited too!
Abby continues to amaze me daily with her progress and positive attitude. She is refusing to let her tumor get in her way, and she is my hero! All of the girls are doing so well being supportive of her and helping her, when she lets them. She is real independent and likes to do things herself, but all of her sisters are that way too. Her hair in the back is growing in nicely and real quick! The top is still a little thin, but I'm sure it will start growing back soon as well.
Maegan e-mailed me an article from Stanford University about how they have finally been able to create Abby's tumor into animals. This is the first time in over 30 years that they have been able to do this, and this is a huge step into finding a cure! I started to read the article, but I got through the first few paragraphs and had to stop. Maegan read the article in its entirety and was real positive, but I couldn't do it. The link to the article is: http://med.stanford.edu/ism/2011/february/pontine.html
I want to try and read it, but maybe in the future, just not right now. It just scares me to death and I don't want to think about what "could" happen and what the tumor can do. I am going to focus on the positive and how well Abby is doing and just rely on the promise from Heavenly Father that Abby will beat this. Keep those prayers coming that the tumor will continue to shrink and go away and NEVER come back! Thanks!

St. Baldricks

 Things appear to be returning to "normal" around our home. Since the weather has started to get nice, Abby and her sisters have been enjoying actually getting to go outside to play!! I'm sure that Abby must get tired of having to stay in the house, and it's good to see them outside playing again.

In a 'developing story', on April 16, the Cape PD is going to be participating in the St. Baldrick's annual head shaving fundraiser. St. Baldrick's raises money for research into childhood cancer, and this year, they have selected Abby to be the sponsor child! The event will be held at Buckner's in Cape. Their website is www.stbaldricks.org. I signed up to get my head shaved, which is no big deal for me since I always keep my head shaved. But for this, I am going to let my hair grow out just so they have something to shave! So if anyone wants to sponsor me in this, just look for me on their website and you can sponsor me! As it gets closer, I will provide more details, but I think they were talking about doing a 5k run with it this year. If they do, I will run that as well.

New Hair

Abby is excited to announce that some of the hair that she lost on the back of her head is starting to grow back!! She has some dark fuzz coming in, and is a little disappointed that its not purple or pink, but she is happy regardless!
This friday, she will go in and get her blood work done again, just to see what her levels are like again. We are expecting to get good results back! Also, a couple of weeks until baby Sara joins us!!

Hanging In There

Sorry for the lack of posts recently.
Things are returning to a somewhat normal state for us. Abby continues to do very well and is a 5 year old girl again! She is loving playing with her sisters and running around. We continue to keep a close eye on her for any symptoms of the tumor coming back and are still very vigilant about keeping sick bugs away. Since she is no longer on her chemo treatment, we are not having to check her blood work as often. Abby also loves going to her therapy appointments! She is very excited when we tell her that she gets to go to treatment. Eventually, we would like to get Abby enrolled in karate class, and Abby wants that as well! We figure that as long as she is in her therapy, she doesn't need to do karate on top of that, but it will help increase her core strength, balance and strength.
Overall, she continues to do very well and we are thankful for all of the prayers on her behalf. That reminds me... for everyone who prays for Abby, we are so thankful! Before, we asked that people pray for her tumor to shrink, and our prayers have been answered! Now, we are asking that people not only pray that the tumor shrinks, but that it will go away and not come back. We have seen the power of prayer and know that it will work, so if we get everyone together to pray that the tumor not only shrinks but goes away, we know the Lord will answer. Thanks everyone!

Abby's in the News!

KFVS 12 news article
Semissourian news article


More pictures have been added to past posts so you will want to take a peek!

Back in the routine

It has almost been a week since we returned from our great trip to Disney, and I believe we are finally getting back into our routines. We had noticed that during the last couple of days in Florida, that Abby would be complaining of headaches that would come and go throughout the day. We assumed it was due to our long days of waking up early and staying up late, but were just not sure. Since we have been home and started the girls back on their 7:30 bed times and Abby and Emily's naps, we have noticed that her headaches have subsided, thankfully. Maegan and I have found ourselves very paranoid anytime Abby tells us that she has a headache or if she does not feel well, so thankfully it has stopped!

On Sunday the 23rd, the Make-A-Wish volunteers are going to have a little party for Abby at our house, mainly for our family members. During the planing of it all, they discussed having a big party, but that was at the time when Abby's blood work was bad and she could not be around people too much. So, for safety's sake, we planned a small party. Maybe this summer we will have a bigger half-birthday party for Abby since she was not able to have a party with her friends over this year.

Mary-Beth is back into her schooling and will be starting piano lessons on Monday. Abby is upset that she is not taking lessons as well, but I told her that we would work with her at home and that Mary-Beth could help teach her what she learns too. Emily has lost ground in her potty-training battle. She was doing really well, but has since started peeing on the floor and not using the bathroom. Hopefully she starts back again soon!

Back in MO

What a week! The girls and I had a blast this past week! Monday was the Magic Kingdom, Tuesday was Universal Studios. On Wednesday we went to Sea World and it seemed like it was going to freeze! We got our picture taken with Shamu and then went in and started by feeding and petting the stingrays! It was pretty cool, you would put the food in your hand and then put it in the tank with the rays, and they would swim onto your hand and then suck the fish off of your hand! Pretty cool! Then we went and feed the dolphins! That was really cool too! The trainers brought the dolphins right up to the side and they would poke their head out of the water , we would pet their chins, and throw in a fish into their mouth. I go t some good pictures of that. I will try and get them put up soon! We then went and saw the dolphin show which was truly amazing. Watching what the trainers and dolphins can do together was really cool. Then after the show, one of the trainers had Abby and us stay after and she brought out a dolphin and taught Abby how to "train" the dolphin to speak, spin in a circle, and then to return home. She thought that was really cool!

On Thursday we went to Hollywood Studios. We saw the Beauty and the Beast show, The Voyage of the Little Mermaid, and then had a blast! The highlight of the Hollywood studio trip for me was getting to meet my alter ego- Mr. Incredible! We got to see Handy Manny, the Little Einsteins, Lots-o-love from toy story 3, and all sorts of characters. That night, we got the chance to meet up with Maegan's Aunt Amber and Uncle Bob, and her cousin Rob and his wife Lori and their daughter Ashley. We met them at the Wilderness Lodge at Disney and had a good dinner and them and it was nice to meet Rob and his family finally.

Friday, we woke up and all of the girls said that their legs were hurting and that they were tired, so we decided to bypass Animal Kingdom and stayed close. We decided to go to Gator land and check out the alligators. While we were there, Abby and Mary-Beth both wrestled an alligator and got their picture taken.

We saw an exotic and dangerous animal show and then a lot of alligators! It was a good and laid back day. We also wanted to get home to the village because there was a party with Santa Claus! We started to party and then it started to snow! There were snow princesses, snowmen, trees, and all sorts of holiday fun! We got some snow cones, cotton candy and candy canes. Our friends from the University of Maryland were there for their last night and we exchanged information with them and already have new friends on Facebook. We have also been telling everyone about Abby's blog and I wish I would have brought some of the cards for the blog. Live and learn. But we wrote it down a bunch and passed it on to many people. We truly made some new lifelong friends!

Today, we woke up and the girls got to ride the horses and the girls got cowgirl hats and had such a good time. More pictures are on a previous post.

Friday night, Maegan's brother Brian came to visit us and we spent the evening with him. It was good to see him again. The last time we saw him, Mary-Beth was a few months old. So its been a while and it was good to see him. We vowed we wouldn't wait 7 years to see each other again!

Now, we are back in St. Louis and the girls have all crashed...HARD! Maegan is ready to go to bed, and my eyes area getting heavy as well, so I apologize for any grammatical or spelling errors, or if this makes little to no sense. Good night!

SeaWorld and Hollywood Studios

I think when we get home on Sunday all of us will sleep the entire day! We are so tired but we are having so much fun at the same time!

On Wednesday, we started out by meeting Ronald McDonald! Abby was so sweet and hugged him so much.

I remember while we were initially in the hospital with Abby and we went to the Ronald McDonald she got so upset that he wasn’t there! So today, we were just excited for her to finally get to meet him! After meeting Ronald, we went to SeaWorld and found out that it still gets a little cold in Florida! When we got there, the temperature was in the 40’s with around a 15-20 mph winds. But, the park wasn’t that crowded so that helped things out! We started off by feeding the stingrays which was really cool! 

I couldn’t talk the girls into letting the stingrays eat off of their hands, but I did it and it was pretty cool! They would just fly up and suck the fish out of your hand! The girls got a huge kick out of that! From there, we went and feed the dolphins which was really cool as well! 

They would come right up to us and let us pet them, and we would toss a fish into their mouths. Mary-Beth wanted to rub a dolphin chin, but never got herself close enough to get one, and Abby and Emily were content to just toss the fish in to the dolphins. We got to see the manatees, and then watched the dolphin show which the girls loved!  

There were acrobats doing high dives, exotic birds, and of course dolphins! After the show, one of the trainers brought one of the dolphins out and taught Abby how to make them talk, spin around, and then return home! She got a huge kick out of that and thought it was the coolest thing. SeaWorld also provided Abby and Emily with a couple of firsts: First teacup style ride, 

boat ride that goes back and forth and around in a circle, a free fall style ride that picked us up around 45 feet maybe and then dropped us some and bounced us around.  

Then, Mary-Beth, Abby and I rode Shamu Express rollercoaster! Abby’s first roller coaster! 

She did really well and was very brave. She enjoyed it so much, we brought Emily and Mary-Beth and Abby rode together, and I took Emily on her first roller coaster too! We bought the pictures of Abby’s first ride from the park and the girls did not want to get off of the ride! They had such a good time.

That night, we were able to meet Maegan’s Aunt Amber and Uncle Rob, as well as her cousin Rob and wife Lori, and their daughter Ashley at the Wilderness Resort there at Disney. It was great getting to spend some time with them and to finally meet Rob and Lori after hearing about them. Abby and Emily were so tired they fell asleep during the dinner and were out! They were so sweet!

Today, we got to meet Belle, Goofy, Mickey and Minnie Mouse, and Pluto here in the village.  

Belle remembered Abby and called her by name as she walked in, as well as Mary-Beth and Emily! She gave the girls big hugs and they got to talk for a little bit. After that, we went to Hollywood Studios which was really cool! The first thing we did was watch a live play of Beauty and the Beast which was formatted to only 17 minutes! 

It was such a good play and the girls just ate it up! A little later, we saw the Voyage of the Little Mermaid, which had a laser show and plenty of effects! 

It was a very nice show that the girls just ate up and were enthralled with! We then got autographs from Handy Manny, a couple of the Little Einstein’s, and then the coolest one every, Mr. Incredible! 

He and I had a little flex off together and it was good to meet my alter-ego!

We then did a couple of other rides and then came back to the village where Santa and Mrs. Claus came and visited us today and brought the girl's presents!!  

After the girls sat on Santa’s Lap and we got some good pictures, we got to dance in the Winter Party. The girls got to meet Mayor Clayton and his wife Mrs. Mary, and they are the mayor of the Village. We then danced with many characters and played in the snow that Santa brought down with him! The girls had such a good time!

After the party, the girls were a little chilled, so we went to the ice cream parlor for some Hot Chocolate. While we were there, we got to say our good-byes to our new and good friends from the University of Maryland who came down to volunteer this week during their break. 

I have to say, we were very impressed with all of them at how much they went out of their way to not only take care of our girls, but to make us feel at ease as well. They became some of our really good friends and we look forward to keeping up with them. They are a part of a group called the Maryland Hillel and their leader/advisor is, Danny Weiss. We got to be really good friends with Danny and the students that he brought down and are already looking forward to hopefully seeing them again in the future! They are another shining star that we have seen through Abby’s endeavor that just brings hope and faith in the future, that 15 college students not only volunteered their holiday break to serve here at the village, but that they paid their own way down here and just are such good people! We are happy to call them friends and family now!

Tomorrow, we plan on spending our last full day going to Animal Kingdom and seeing what adventures are awaiting us! This week has gone by so fast!