Sunday, July 13, 2008

A VERY SPECIAL Show and Tell

Today my Show and Tell is a very special one.

A friend of mine, her name is Annette has been going through a very hard time for the last year.

Her 11 year old daughter Aimee was diagnosed with a brain tumor.

I met Annette through a friend some years back. She is an amazing lady, always helping others and never asking for anything in return. She is super strong and has been a single mother for along time. I never knew her to complain about anything and she is always smiling.

I found out initially about Aimee via an email from Annette. I am in Egypt and felt so helpless, like I wished I could be there to give her a hug. I have followed Aimee’s journey via Annette’s emails and I wanted to share it with all of you today.

It’s a long post, but you know what, it deserves the time and space. Annette and Aimee’s story will really make you thankful for your healthy kids if you have them, make you think about your future kids if you are TTC and if you don't have kids or are not trying, still their story should be an inspiration to all.

Feel free to send Annette and Aimee an email of support . Aimee’s 12th birthday is July 22nd.
E-mail them at  annette@aimeesarmy.org and aimee@aimeesarmy.org


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Annette’s son was married in May 2007. At that time, Aimee was a cheerleader and her squad won a state competition. They were headed for a national competition which was being held in August 2007 in Wisconsin. Aimee too has been racing go-kart's since she was six; she has always been very active.

After Annette and her family came back from her sons wedding in PA, Aimee's team had to raise the money to go to the National competition, so they held car washes every weekend.

During this time Aimee was telling Annette that she had headaches, and felt sick to her stomach. Annette thought it was from the heat of being out in the sun all day washing cars, pretty much like everyone was feeling. Over the next several weeks Annette started noticing changes in Aimee, one was losing her balance when she walked.

In August before the National Competitions were to start, Aimee started being dizzy and light headed more and more with each passing day. After several doctor appointments Annette was told that it was a sinus infection, her eyes, or dehydration from the heat- that she should just keep taking the medicine prescribed for her.

Aimee continued to become sicker and sicker.

On September 4th, 2007 Annette took her to the ER because she started to vomit, which Annette assumed was from all the medicine she was taking.

They did a CT scan of her head, a chest X-Ray, gave her IV fluids and sent them home stating that nothing was wrong with Aimee. They told Annette to see a different primary doctor, Annette made an appointment but it wasn’t until September 25th 2007 that Aimee could be seen.

During this wait Aimee told Annette that she was wasting time going to all these different doctors because she felt as though she had a brain tumor. Annette told her no way, that wasn't possible.

After their appointment on the 25th and with a referral to a Neurologist but not until mid October, Aimee started to vomit outside in a garbage can. Annette wanted to go back up to the doctor’s office and Aimee told her no; she said “I just need to go home and sleep.”

She slept and vomited the entire next day.

September 27th, 2007 Aimee woke up, got ready for school because it was picture day and she really wanted to be there. As they started to ride their bikes to school Aimee began to sway all over the rode. Annette joked with her that she was going to get picked up for a DUI, Aimee she said she was going to pass out. She did.

Annette called the doctor as soon as they got back got home and he told her to take her right away to Children's Hospital. This is when Annette’s nightmare began.

Aimee had another CT done of her brain- doctors told Annette they saw a shadow- so they did an MRI.

They then told Annette Aimee was going to be admitted for more tests because the MRI had showed that she had a Brainstem Glioma.

It wasn't until the next day while Annette talked to the Oncologist and saw the MRI results that she had any idea as to how serious this all was. She was told that since the tumor took up Aimee’s whole interior brainstem, surgery was not an option. At most they could reduce the tumor with radiation. Aimee was given six months to live.

Annette recalls hearing the news that her child has only six months and says it was beyond painful; no words could describe the feeling. She said Aimee is and was at that time too 100% aware of everything, she didn't and does not hold anything back. Annette tells Aimee the truth when she asks.

From the time of Aimee’s admission to Children’s Hospital on the 27th of September her health deteriorated rapidly. Doctors found that the biggest part of the tumor was pressing on the nerves that control her swallowing function. Aimee began to tell everyone that she felt like everything she was eating and drinking was ‘going down the wrong pipe’.

On Monday October 1st Aimee went in for a swallow study test. They found out that everything was going into Aimee's lungs and not her stomach. By 2:00 am Tuesday morning Aimee was transferred to ICU. Her lung had collapsed and she was put on a ventilator.

Aimee spent the 54 days in the hospital. During this time her lung had collapsed at least 4 times and her infections didn't seem to want to clear up. She had to have a Tracheotomy to help with her breathing. They also decided to put a feed tube directly into her stomach instead of down her nose.

When Aimee had her Trach put in they were told that it was going to be hard for Aimee to be able to talk let alone do anything else. Well, Aimee shocked everyone playing her clarinet flawlessly as if she never stopped playing. She played Twinkle Twinkle Little Star and Hot Cross Buns. Aimee is an inspiration to all. Annette writes “I am so proud of you for not giving up and pushing yourself everyday to be who you use to be. I love you….”

In early November 2007 doctors decided to do what is called VATS surgery on Aimee’s lung. It was her lung that was holding her back, not her tumor.

Since Aimee was on a ventilator she was unable to talk, Annette taught her the Alphabet in sign language. Annette says the blessing here was at least Aimee was able to communicate with her and several of the hospital nurses.


Aimee completed her radiation on November 19th, 2007 and she was finally able to come home November 20th, just two day's before Thanksgiving. That year they had so much to be thankful for Annette says.

Aimee was back in the hospital on December 16th ,2007 because her feeding tube became dislodged from her stomach, which caused an infection. She had surgery and came home December 23rd 2007. This too was the best Christmas they ever had as Aimee was home again.

On January 4th, 2008 Aimee had an MRI to see if the radiation was helping with her tumor. The good news was that the tumor had stopped growing. The bad news was that it had not shrunk at all. The doctors wanted to try a new experimental drug in mid February which they hoped would kill the tumor. Aimee would only be able to try this medicine if she stayed stable.

Throughout this time Aimee was being home schooled and she was doing very well. One of her teachers from school used to visit Aimee at home to check on her progress, Annette says she was always amazed at her weekly progress.

Before, Aimee got sick she was a B to A student. Towards the end of 5th grade her grades started to slip. Annette found out later that it was the tumor growing that caused her grades and concentration to fall.

Aimee went to school to visit her class on Wednesday Jan. 30th, 2008. Her classmates faces showed a bit of shock and some fear. They had never seen any of their classmates with a Trach or using a walker before. Just several months before Aimee was running and playing with them on the play ground. Aimee’s principal explained everything to the students in a way that children could understand, and some of them already knew because they had come to see Aimee while she was in the hospital, and then again at her home.

Annette posted Aimee's e-mail on the board in every 6th grade class room, six in all, so if any of the kids wanted to keep in touch with her they could. Aimee received close to a hundred e-mails later that day. They went back to the school on Wednesday Feb 6th, and Aimee had lunch with some of her friends. Although, she was unable to eat, just sitting and visiting with her friends meant so much to everyone.

That night Aimee asked Annette that if her going to her school, e-mailing, and visiting with her friends coming to see her, hanging out with them- if by doing this was she was giving them good memories? Annette told her the best memories they will probably ever have; also that Aimee too would have these memories to keep forever. How can such a young child be so smart Annette thought?

Annette took Aimee to the doctor on Friday Feb 8th, 2008 and it was decided that the best thing to do was for them to move back to Pennsylvania since Aimee was so stable at that time.

Annette’s doctor referred her to a doctor at the Philadelphia Children's Hospital who had excellent experience and a good track record treating kids with Aimee's type of tumor.

Aimee had another MRI in early March when they first arrived in PA and compared to the MRI in October 2007 it showed that her tumor had shrunk 40%. The doctors mentioned removing Aimee’s Trach and mickey button for her feed tube. Aimee ate all she wanted the prior month with no problems swallowing; she was doing so well.

April 13th, 2008 Aimee held her niece Emma who was 10 weeks premature and she fed her a bottle. Aimee's face was shining so bright. In early February Annette was dealing with the fear of possibly losing both her daughter and granddaughter and maybe even her daughter-in-law…this whole sequence of events had been the hardest thing Annette has ever experienced.

Annette writes… “I thank God everyday for Emma and Aimee's good health. And that my daughter-in-law is also doing so well. I also thank Him and pray for everyone that has been praying for Aimee and Emma. My words of thanks to all of you will never be enough. Each day that I have Aimee to talk with and play with is a day I will never forget and treasure always. She is really one of God's many miracles, as is Emma and all sick and premature children. Actually, all of the children are miracles but we tend to forget when everything else in life is going so well. ..”

Aimee and Annette went back to the doctors on April 22nd, 2008 and were told at that time that Aimee's tumor has started to grow again; the doctors gave Aimee 8-12 weeks to live.

Annette was also told that Aimee could start chemo which would last about 12 weeks and maybe only extend her life another 4 weeks. After a long talk and questions to the doctor Aimee decided that she didn't want the chemo; she said would rather spend the next 12 weeks hugging her family than hugging the toilet.

Aimee told Annette that she is the luckiest girl in the world to have been born into such a loving and caring family. Annette told her she is the lucky one to have her in my life. Annette writes…” She has taught me so much over her little 11 years. I feel as though she already is one of God Angels…”

On May 6th Aimee loss use of her left arm and started dragging her left leg. Over the next few weeks Aimee was having good days and bad.

Several days before they left for the surgery, Aimee started complaining of headaches, Annette gave her the meds she was taking back in May, Oxycodone.

By the time they got to Philly Aimee’s headaches were really bad but she wouldn't tell anyone because she thought they might not do her surgery if they knew. Aimee finally said something and doctors increased her dose to 20 mg's every 3 hours.

The doctors at Philadelphia Children’s Hospital started Aimee on dexamethasone which was a steroid to help with the swelling in Aimee’s brain. While she was on this Aimee started to become very large around her stomach, face, and feet which was making it very hard for her to walk and breathe.

The doctors in Philly didn't want to do anything other than slowly take her off the dexamethasone. However, her hospice Doctor put Aimee on water pills despite the Philly doctor’s wishes and within a week the swelling in her body had started to go down.

Aimee and Annette went to Philadelphia on June 23rd, 2008 to have her porta cath and Trach removed. Her porta cath had not been used since late Nov or Dec, and it is became more and more difficult for the nurses to access it every month in order to flush it. If the port is not flushed correctly on time every month it could cause blood clots. Aimee was very excited about getting this done; she had wanted both out for months. She hoped that once the Trach is out she would finally be able to take a bath and shower without choking, but most of all she wanted to swim.

June 27th, 2008 back at home Aimee was crying and begging God to please stop her pain. She kept asking God to forgive her for whatever it was that she did to be punished this way. That was the hardest night for Annette, not being able to help her daughter and having to watch her suffer in so much pain.

When she continued crying through the night, Annette decided to give her some Ibuprofen with just the original 5 mg's of Oxycodone. Aimee slept until 10:00 am and not once got up to complain about her headaches. During the next day, Saturday Annette only gave Aimee a 200mg tablet of the Ibuprofen every 6 hours. Annette says she knows God heard her begging for His help. She says God first showed her how to help stop Aimee’s pain and then He stopped it all together.

Since Tuesday July 1st, 2008 Aimee has been pain free and is not taken any meds at all.

July 11th began Week 11 of the 8-12 weeks they gave Aimee to live.

Annette is currently the process of working with lawyers to establish Aimee's Army as an official non-profit organization.

She is also working on getting t-shirts, bandanas and wrist bands made. Aimee chose a rabbit as her logo. The rabbit will be wearing a camouflage jacket of gold (childhood cancer) gray (brain cancer) and lavender (all cancers).

So Annette and her family have been very busy celebrating Aimee’s life, spending as much time as possible with family and friends. Annette told Aimee from the start that the doctors can not tell her just how long she has and that only God can make that choice. She also told her that God has many miracles and she may be one of them and that she shouldn’t count down days, but rather keep her faith and hope alive.

Aimee has her good days and bad days Annette says but all in all they are good days. She is a true fighter, and a great inspiration to all who know her.

22 comments:

  1. What an incredible story and story is the wrong word because that gives the impression that it's fiction - and as Annette and Aimee know, this is definitely not fiction.

    It definitely makes me think that I should stop moaning about my very insignificant worries and take more joy in my life. They are both such an inspiration to the rest of us. May God bless them both.

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  2. Wow. Thank you for sharing this very special story.

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  3. This was a really special Show and Tell. My heart goes out to this family. Thank you so much for sharing their story.

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  4. Thank you for sharing this story. Very sweet. You sound like a very good friend too.

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  5. I am so glad I read your post. Aimee and Annette sound like such a wonderful daughter and mother- both lucky to have the other. Thanks for sharing.

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  6. Wow! What a beautiul story. Annette should be so proud of herself for taking such great care of her daughter. It sounds like they have a beautiful relationship.

    Thank you for sharing this story of courage, truth, and bravery!

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  7. I'm sitting here in complete tears. I will keep them in my prayers. Please keep us updated on how they are doing.

    Thank you for sharing this story. It makes my daily worries almost insignificant and makes me thank God even more for the health of my children, and pray even harder for their continued health.

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  8. What an amazing story. Thank you for sharing this.

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  9. this is an incredible story, sad and beautiful. thanks for sharing, and know they have more people sending them their best.

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  10. I am in tears. What an amazing little girl. Her wisdom and courage are beyond her years and her strength is inspiring.

    Please keep us posted on how she is doing. Many prayers going their way.

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  11. What an amazing girl, Aimee is a very courageous girl! Annette and Aimee have quite the story; it is wonderful that Annette is working on Aimee’s Army! Please keep us up dated! Thank you for sharing their story, it truly makes me feel so bless to have a healthy family. I will remember them in our prayers.

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  12. What an amazing Show & Tell. I am almost speechless. My heart is filled with sadness, yet inspiration, from your amazing friends. I will keep them in my thoughts and prayers.

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  13. Heartbreaking. Such a tough and remarkable little girl who has so much to teach us. Thanks for the lessons this story and these photos teach....

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  14. What a touching story and what a beautiful little girl. I will keep them in my thoughts.

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  15. This story kind of puts small things into perspective.

    Sending good thoughts to Aimee and her family.

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  16. Thank you for sharing this family's story with us. Aimee sounds like an incredibly strong young lady.

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  17. Whenever I was feeling sorry for myself or moaning over some perceived injustice, my mother would always tell me, "you know, somewhere someone has a much harder life than you do. Be thankful for what you have."

    Reading Annette and Aimee's story brings her words to mind again. Thank you for sharing and helping us all realize just how fortunate we are.

    Sending prayers to this beautiful mother and daughter.

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  18. What a strong, beautiful little girl. I can't imagine how difficult this all must be for their family.

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  19. Hi all, this is Annette and I would like to thank you all for your kind words and prayers. Wishing4one is an amazing friend and I am really blessed to have her in my life, and now all if you. I promise to keep wishing updated on Aimee's progress and I'll try my best to keep aimeesarmy.org updated as much as possible. Again, thank you all and my God bless you today and always.

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  20. Wow, thanks for sharing that. I'm sitting at my computer with tears in my eyes. I hope Aimee can continue to feel well and I'm so glad she has such a wonderful family and that her mother has such a wonderful and supporting friend.

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  21. I'm speechless. Thank you for reminding me what I have to be thankful for. I will be praying for Aimee and all of her dear family. She and her mother are very strong. Thanks so much for sharing this.

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  22. So incredible and sad. I'll be thinking of them. Thank you for sharing this.

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