Tree Down!

The huge Ash tree in our front yard finally came down yesterday. It was diseased and, quite frankly, hazardous (last spring a big limb fell on Ron's car and totaled it). Aidan and Ron would watch the squirrels run up and down this tree. It will be replaced with a beautiful Autumn Blaze maple. We will plant little purple flowers around it just for you buddy!
Aidan would have loved all of this excitement, especially the big truck coming up on our front lawn to remove it.

I hope you were watching, Aidan.

Aidan Manning Tribute at Children's Memorial Hospital

Earlier this week, because of the generous support Aidan's Army receives, the Aidan Manning Memorial Foundation was able to make a large donation to Children's Memorial Hospital to advance medulloblastoma research. Following is an excerpt of a letter we received from Children's Memorial Hospital yesterday...

Dear Mr. and Mrs. Manning,
On behalf of the Children’s Memorial Hospital family, we are deeply grateful for the gifts we received in memory of Aidan Manning. Contributions such as these are not only a wonderful tribute to Aidan, but also serve as great inspiration to our caregivers. I hope your family takes comfort in knowing that your thoughtfulness is providing hope to other families in our care.
Keeping with the hospital’s mission to "celebrate life and inspire hope," we have created the Gifts of Love tribute wall, which is located in the hospital’s Siragusa Lobby. We would like to offer your family the opportunity to have Aidan’s name included on this tribute wall.
There will be a special memorial service and plaque dedication on Sunday, April 17, 2011 hosted by Children’s Memorial Hospital. Following the memorial service, we invite you to join us for a private reception for our 2010 Gifts of Love families to provide you with a special opportunity to see Aidan’s name on the tribute wall.
Again, please accept our deepest appreciation for the generosity that you and your family have inspired which will continue to touch the lives of others.

Many tears were shed...so sad and yet so wonderful. Little Aidan will never be forgotten.

Valentines Day

Missing our favorite little Valentine today...

It has been a bittersweet week for us. Last week we launched our web site, www.AidansArmy.org. We hope that our work at Aidan's Army helps Medulloblastoma researchers move closer to a cure. Aidan's life, albeit too short, has made this work possible and his passing has made it necessary. We promise we will do great things in your name, sweet Aidan, this side of heaven.

Aidan, you're forever in our hearts, buddy. Throwing up kisses and hugs to you.

Merry Christmas From Heaven

I still hear the songs, I still see the lights
I still feel your love on cold wintry nights

I still share your hopes and all of your cares
I'll even remind you to please say your prayers

I just want to tell you, you still make me proud
You stand head and shoulders above all the crowd

Keep trying each moment, to stay in His grace
I came here before you to help set your place

You don't have to be perfect all of the time
He forgives you the slip, if you continue the climb

To my family and friends, please be thankful today
I'm still close beside you, in a new special way

I love you all dearly, now don't shed a tear
Cause I'm spending my Christmas with Jesus this year

Play hard and have fun in heaven, Aidan Wayne

Snow!

This past week's snowfall reminds me of a conversation I had with Aidan last year while driving past a field covered with fresh new snow...
Me: Aidan, look at how much snow has fallen.
Aidan: Snow (nodding).
Me: Yes, snow. It's very pretty.
Aidan: It's a mess.
Me: Sometimes snow can be a mess.
Aidan: Momma will clean up.
I remember looking in the rearview mirror seeing his big smile...only 2 1/2 and he had it all figured out.

Dancing Through the Decades Hospice dinner dance

Dancing Through the Decades...A Benefit for Hope's Friends

On November 13, 2010, Ron and I were invited to honor Aidan and share his story with 400 guests at a benefit for Hope's Friends Pediatric Hospice.

The theme was 'Dancing Through the Decades' of the 60s, 70s, and 80s. Guests were invited to dress in the popular styles of their favorite decade.

The event was held to support the Child Life Specialist Program and Camp Courage at Hospice and Palliative Care of Northeasten Illinois.

Pictured here are the nurses, along with Dr. Henry (center), who cared so passionately for our sweet Aidan. Their team came dressed as the Village People..."Biker Babe" Michelle (complete with moustache), "Chief" Sheila, and "Officer" Carrie.

We donated Aidan's wheelchair to this remarkable organization and also announced them as one of the beneficiaries of Aidan's Army.

Happy Halloween

Remembering sweet Aidan and Halloween's past.

Last year in 2009, he was our favorite space ranger, Buzz Lightyear. How he loved Toy Story!

This photo was taken in 2008. Brave, little Aidan...forever our Superman.

Sandwich Fair 9/12/2010

Ron and I, along with Patty and Matt went to the Sandwich fair this past Sunday. Uncle Matt Matt has been telling Aidan about the Sandwich fair since he entered the world. Last year he even bought him his very own John Deere tractor. This year would have been Aidan's first visit, so we went for him...

We visited some of the 4-H animals, the roosters and the bunnies. We saw the freakishly big pumpkin. I think it weighed in at 438 pounds.
Of course we indulged in some fine fair food (Patty calls Sandwich Fair the glutton bowl. That's pretty accurate). If anyone from the neurosurg team at Children's is following you will remember "the bacon diet". How that made Aidan laugh! Well, hands down, my FAVORITE thing we sampled was deep fried bacon drizzled with chocolate. It was complete genius and I hope it made you smile buddy!

This year they had antique fire trucks. Interesting that they didn't have them at the fair in the past? Hmmm. Aidan must have let them know this would be an awesome addition...he loved fire trucks.

Uncle Matt-Matt and Ron stole a picture on one of the tractors. Matt tries to get one every year.

Lastly, we took a ride on the train that went around the fair...I'm sure that would have been Aidan's favorite part of the day. A boy and his trains...


We had a great time and I hope you did too, Aidan! I know you were with us, sweet boy.

Many THANKS

Hello Everyone-
On behalf of my entire family I would like to say THANKS ...
Many of you have cried, listened, sent us cards, called, brought us food, hugged, reminisced or even sat quietly with us, and we appreciate each and every one of you.

Thank you for all the kind words, prayers, comments and positive thoughts, they all mean so much to us. I apologize to some of you who have attempted to comment but could not, I adjusted the settings so hopefully it is fixed.

I would also like to thank everyone who has donated money to Aidan's trust, every cent will go toward the research and treatment of childhood Medulloblastoma.

These last six weeks have been extremely rough and we're all taking every day as it comes. We appreciate all the support.

As I promised I will keep this blog going, Aidan was too special to me not to let the everyone know what an amazing little boy he was.

The last few days I have been taking walks through the park, it's been windy, Aidan liked to feel the wind on his face. I miss him terribly.

Lots of Love - Patty

Aidan Manning Arrangements

Dearest friends,

Aidan's arrangements have been finalized. His death notice will be in the Sunday Chicago Tribune.

Visitation Tuesday 3:00 to 9:00 pm at Williams-Kampp Funeral Home, 430 E. Roosevelt Rd., Wheaton (1 block east of Naperville Rd.)
Funeral home prayers Wednesday 9:15 am then to St. Michael Church, Wheaton. Mass 10:00 am.

Donations to Aidan's trust are very much appreciated:
You may make checks payable to The Aidan Wayne Manning Trust
(Please write the account # 2910 0745 0433 in the memo line).
Bank of America
P.O. Box 29966
Phoenix, AZ 85038-0966

Every cent in the trust will benefit childhood Medulloblastoma research and treatment.

We sincerely appreciate your thoughts and prayers during this time.

Aidan 7/30

Hello dearest friends,

I am deeply saddened to share this news...
Our strong, brave, gentle boy has left this world. Aidan passed away this afternoon at home in our arms. I felt his little soul leave his body.

We will be making arrangements tomorrow (his wake will be Tuesday with a funeral mass Wednesday). I will share the details with you after they are finalized.

"When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight."
~ Kahlil Gibran

Thank you for your continued prayers for our family.

Aidan Update 7/26

Hello Everyone- Update from my sister below. If Kitty is unable I will try my hardest to keep everyone up to date. Please keep my entire family in your thoughts and prayers.
- Patty

Dearest friends,

I write with a heavy heart...
We are at Children's. Aidan had his MRI today. It showed significant tumor spread both in his brain and spine (much worse than when he was initially diagnosed). It is hard to imagine that just 6 weeks ago, his MRI was clean.
We have had discussion with his oncologist who stated that treatment at this point will unlikely be curative, but possibly extend his life for a little while.
We are sad beyond words...how does one even begin to say goodbye to their child?
I will update with more info as I am able.
Sent from my BlackBerry® wireless device from U.S. Cellular

Prayers for Aidan

Hello dear friends~

I hope this e-mail finds you well and that you have been enjoying this hot summer. Aidan has been feeling relatively well. We have been so happy to have him home...he has managed to stay out of the hospital since June 14th (a record for this little man).

We are asking for you to keep sweet Aidan in your prayers.
He has an MRI of the brain & spine this Monday 7/26. It is essential that we have a clean scan to move forward to stem cell transplant.
Unfortunately, we have received some discouraging news...Aidan had a CT scan a couple of days ago that may have showed some disease progression. However, the quality and resolution of the film was low (the scan was done to evaluate the fluid in his ventricles, it is not the ideal film to interpret disease status- MRI is the gold standard). Of course, this news was frightening to us nonetheless.

So, we lift little Aidan up to God and ask that He goes before him to the MRI scan. We pray the MRI results be clear and encouraging and show that Aidan is improving.

We thank you for all of your prayers and support during this very difficult time. I will update next week with results.

Sent from my BlackBerry® wireless device from U.S. Cellular

Sleepover 6/28

Uncle Matt and I were very happy to have Aidan and Kitty over for a sleepover on 6/28. We live pretty close to Children's and Aidan was having his CT scan the next morning. We can't wait till he beats this so he can come over and play all the time!! We love you buddy!!

Aidan Pics 6/26

Aidan was very happy ... he had visitors to entertain!

Uncle Matt and I went to visit and Aunt Sandy came to visit too!

What a busy boy!

Could his smile be any bigger?!?

Doing a puzzle with Aunt Sandy.

Cheese!

AIDANS ARMY BRACELETS!

Linda Lindstrom is making "Aidan's Army" bracelets as a funraiser!!!

The bracelets are $25 a piece. If you are interested please email Linda at linlin8@comcast.net

I love my bracelet and wear it all the time!

Linda- We THANK YOU for doing this!!

Linda also makes other jewelry ... her website is http://crystalgoddessonline.com/

Aidan Update 7/01

Hello dear friends,

I write with very good news...
Aidan has been home for 17 consecutive days. That is HUGE for him! The last time we could say that was in December prior to his diagnosis.

He had his CT scan yesterday to evaluate the status of the fungal infection in his lung. It looks clean...no evidence of fungus. It's truly amazing as fungal infections typically take months of treatment before seeing good response. God is good...He is watching over this sweet boy. Thankfully, that means Aidan will not require any surgery.

The plan now is to do oral chemo at home beginning today for 5 days. Once he recovers from that (approximately a month from now), he will probably be ready to move to stem cell transplant.

We are so very thankful to be able to have him home and provide him some "normalcy".
We are also thankful to have all of you as friends. You have all been such great support for us. We truly appreciate all of your prayers and kindnesses.

We wish each of you a happy and safe holiday weekend.
Sent from my BlackBerry® wireless device from U.S. Cellular

Aidan Update 6/16

Dear friends,

I am happy to say that Aidan is finally home. He was released late Monday night after spending another 2 weeks at Children's.

His lung surgery went okay. They were able to remove 1 of the 2 nodules. The one that remains was deeper in the lung tissue and to remove it, it would require complete resection of the lower lobe of his right lung.
Pathology report came back that it is indeed fungus. Etiology is still pending, but aspergillus is suspected. He is on two antifungal agents.

This infection will impact stem cell transplant...
The transplant team will not begin treatment until he is on 4-6 weeks of antifungal therapy and demonstrating favorable improvement via CT scan. We are not in a good place here as that is too significant of a delay.

The plan now is to have a CT scan in 2 weeks to view his response to the meds. If it demonstrates improvement, Aidan will take an oral chemo medicine at home for 5 days which will remain in his system for 4 weeks. That should buy us enough time to move to transplant without incident.
If, however, the scan shows worsening or no improvement in the fungal infection, we may have to consult surgery to have it removed so that transplant isn't delayed any further. Of course it is our hope and prayer that he shows good response to the medicine. I cannot imagine having him undergo another surgery. He has been through too much already.

We had some positive news on Monday. Aidan had his brain and spine MRI and it looked as well as the last scan. That was all we could have hoped for.

We are hoping to stay out of the hospital until transplant. It would be nice to have him enjoy some time at home.

Thank you for your continued well wishes and prayers.

Aidan Update 6/9

Hello dear friends~

We are still at Children's. I am going to begin calling it our second home. Let me start by saying that Aidan is definitely feeling better the last couple of days. Again, Aidan is keeping everyone busy...

We were admitted on Memorial Day for a GI bleed which seems to be healing well for now. With his 4th cycle, he had a bad gut. After his 5th cycle it has been a VERY bad gut. I am scared as to what stem cell transplant will be like.
Since we have been dealing with belly bleeding and some significant pain, an abdominal x-ray was taken. His belly looks okay (the lining of his gut will need to be looked at via endoscopy at a later date). However, they caught a glimpse of his right lung which showed an abnormality. A chest film was taken, followed by a chest cat scan last night. Aidan has 2 nodules in his right lower lung. It is highly unlikely that this is tumor spread as Medulloblastoma very rarely moves outside the CNS. It is believed to be an infectious process, most likely fungus. He is scheduled for surgery tomorrow to have them resected.

For as awful as this is, we are so very thankful that this was caught now. If he was to move to transplant with a disseminated fungal infection, it would have certainly taken his life. God is watching over this sweet boy.
We have a laundry list of things to accomplish prior to transplant...endoscopy, lumbar puncture, MRI of his brain and spine to determine tumor status, and treatment of this infection.

We are hoping treatment does not delay transplant too long. Fungal infections are incredibly difficult to treat and the courses are typically long. If we are unable to go to transplant in a timely manner, his oncologist stated that it is possible he may receive an abbreviated chemo cycle in the interim.

It looks like he will remain in the hospital at least through the beginning of next week. Please keep him in your prayers for an uneventful and successful surgery tomorrow. I will update when I am able.

Aidan Update 6/3

Good morning dear friends~

Aidan remains at Children's. Thankfully, they have changed some of his medications and it seems to have helped a little in controlling his GI bleed.
We were able to breathe a tiny sigh of relief on Tues morning as it was relayed to us that the TWO results of his clotting times were incorrect (only 24 hrs later). They are, in fact, normal. However, this error, along with the fact that they also relayed a false hemoglobin count to us, painted a very poor clinical picture of Aidan. Quite scary and caused him an unnecessary visit to the ICU. I am beyond displeased with the manner in which things were handled and everyone of importance knows about it. I will say no more except that the people in the lab here are "special".

We had more excitement...on Monday night Aidan ripped out his PICC line (the central catheter in his arm for IV access). Good times. Apparently, he thought he didn't need it anymore. He was wrong and we had a visit to IR to have it replaced Tues morning.

Aidan will probably be here a few more days as he is back on a morphine pump for pain...the mucositis is back. It looks like his white blood cells are just starting to recover and once that happens, the mucositis is able to heal and his pain will subside.
He also spiked a couple of high fevers and is back on antibiotics. We are awaiting the results of his blood cultures.
It's never a dull moment here.

Thank you so much for all of your prayers and well wishes. I will keep you posted.