Aidan update 03/24

Hello dear friends,
I am writing you from our family room couch. Yes, you read that right...Aidan is HOME! He was released from Children's on 03/17 to Marianjoy for inpatient rehab.

From the moment we walked into inpatient rehab, I requested that we be promptly discharged. Needless to say, they were hesitant and thought that I was a crazy person (which, these days is certainly debatable). However, they were unable to give me sufficient reason for him to be institutionalized. So, they discharged him Monday morning and he will participate in a day rehab program at Marianjoy.

Aidan is doing well. However, as his strength increases so does his frustration level. He needs help doing some things that he was able to do unassisted prior to becoming sick. He is often refusing help while sitting and eating. It is maddening for everyone. I keep telling myself that his strong will is what will help him get through treatment. So, we just have to deal with the frustrations in the meantime. UGH!!!

We were at Children's today to meet with the stem cell transplant team and road map the next couple of months. Aidan had his weekly chemo injection and a transfusion. We love the marathon days at clinic...11am appointment and out the door at 5:30pm just in time for rush hour. It is funny, you can laugh.

Aidan's white blood cell count should rebound within the next 5 days or so. He will have a break for 4-5 days then he will be given medicine to further stimulate white cell production prior to harvest. If all goes well, we would anticipate stem cell harvest in the second week of April. Harvest happens over 2 days and his 4th chemo cycle will immediately follow. So, he will have an inpatient stay for about 6 days.

I want to thank all of you who came out to show your support for Aidan at the fundraiser this past Sunday. It is heartwarming to know that he truly does have a whole army behind him!

Please continue to keep sweet Aidan in your prayers. As always, I will update you with future happenings.

Peace,K

Aidan Update from Patty 3/17

Hello Everyone-

Kitty will probably update soon, but I wanted to share the GREAT NEWS!! After 87 days at Children's Memorial, Aidan has been released to inpatient rehabilitation at Marianjoy in Wheaton. One step closer to home!

We look forward to seeing you at the fundraiser on Sunday to celebrate the steps in the right direction!
Please keep Aidan in your thoughts and prayers.

Love-Patty

Aidan Update 03/11

Hello everyone,
I write with good news. This past week has been good for Aidan!

He had his shunt surgery last week Thursday. So far it has proven successful. He will have another scan this coming Monday to check the status of his ventricles.

My sister has created a blog for Aidan. http://aidanmanning.blogspot.com. If you have a minute, log on and see some pictures from last weekend when Aidan's uncle Matt came for a visit in a hotdog suit. Hilarious!

Aidan has been making good progress. Thankfully, he has been coming out of his cerebellar mutism. Those connections are starting to get reestablished. He is becoming more successful with feeding and is starting to say some more words. Physical therapy is difficult for him, but he is getting stronger everyday.

The MRI of his brain and spine this past Monday demonstrated more tumor regression since the last chemo cycle. Needless to say, everyone is pleased. We have finally been transferred to the oncology unit (it seems like such a milestone considering our first two rounds of chemo were in the ICU and then the neuro unit). As I write, he is in the midst of chemo cycle #3. He will finish this round Sunday morning.

If all continues to go well, Aidan will probably be able to go to rehab next week (midweek sometime). We are so looking forward to that.

Thank you for caring and hoping and praying for our sweet Aidan.
I will keep you updated.
Have a good night

FUNDRAISERS!

Hi Everyone!

We are having a fundraiser for Aidan on Sunday March 21st at Diversey River Bowl if you are interested, please email me at pmcmahon9@yahoo.com

The great people at Elmhurst Hospital are also having one ... see picture above! It will be Friday April 16th at Wheaton Bowl. If you are interested and would like more information please contact ...

Amy Johnson ajohnso@emhc.org

Lisa Hernandez lrzorc@yahoo.com

Grace Balinski gbalins@emhc.org

If you are not able to attend and would still like to make a donation please see the box to the right for banking information!

Love-Patty

Hot Dogs!!

Today is Day 78 at Children's Memorial ...

There is a restaurant across the street from the hospital called America's Dog. They have a challenge there that if you eat 18 of the 21 types of hot dogs you get a free meal, a tshirt and a picture of yourself in the hot dog costume on their website. Uncle Matt aka Matt Matt did the challenge, it only took 2 weeks ... his goal was to be able to wear the hot dog costume for Aidan!

So this past Saturday he surprised Aidan in the costume! We all had a much needed laugh.

Aidan had his MRI today to evaluate tumor status, we will have results tomorrow. Hopefully chemo will start on Wednesday. Please keep him in your prayers.

Love-Patty

Aidan Update from Patty

Hello Everyone ...

First off I want to THANK YOU for all your support and prayers for Aidan, Kitty and Ron.

Today is day 76 of Aidan being at Children's ...

Shunt surgery seems to be successful so far ... Yesterday Aidan was doing good, lots of smiles and giggles. We even think we heard him say "Mom"... the first word since his December 21st! Aidan is scheduled to have a MRI on Monday, we will then see what progress he has made with chemo. Please say a prayer and send all your positive thoughts his way.

We have a fundraiser planned for Sunday March 21st at Diversey River Bowl, if you are interested and have not received an evite please email me and I will add you to the list. pmcmahon9@yahoo.com


Love - Patty

Wednesday, March 3, 2010 9:38am

Good morning dear friends,

I first want to thank you for your outpouring of support, prayers and well wishes. We are truly blessed to have such a wonderful group of friends.

Aidan continues to make good progress, both physically and in spirit. It is very slow going, but we are seeing a little bit more of him each day. That little sparkle is back in his eyes and is so very good to see! He has even started flirting with his nurses with his little coy smile.
He is getting stronger each day and his movements are becoming more purposeful. He is even giving high 5s and shaking hands.
Finally, his eye movements are becoming more normal. He is beginning to track objects now.
Feeding continues to be a little bit of a struggle as he is relearning how to use his tongue. It is mind boggling at how much coordination it takes to chew and swallow...the things we all take for granted.
We are still waiting for Aidan to speak some words. We believe that we heard a raspy "mom" yesterday. It's a start.

His neurosurgeon is planning for his shunt surgery tomorrow (Thursday). Aidan has what is called low pressure hydrocephalus (not too common) and it has been quite a challenge to move his drain to a positive pressure which is ideal when placing a shunt.

We anticipate a full brain and spine MRI early next week to evaluate tumor status and expect chemo to follow shortly thereafter.
Dare I say it? If all goes well and he is internalized successfully, we may be going to rehab the third week of March.

It is truly amazing how far little Aidan has come...he is quite a fighter. Ron and I talk all the time about how when children are young, their parents are their biggest heroes. We have now realized that Aidan is OUR biggest hero.

It looks like we are going to have a busy week. As always, I will continue to keep you updated with Aidan's progress.