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.

Aidan Update 5/31

Hello friends,

Again, I write from Children's. Aidan was admitted to the ICU this afternoon. Upon waking this morning, he was vomitting blood. Already today, they have transfused blood and platelets. When a patient is actively bleeding, they run a lab to test clotting times. Aidan's were double what they should be (meaning it is taking him a lot longer for his blood to clot). Of course, this puts him at risk of bleeding anywhere. So, we are in the ICU to have him closely monitored. No one has given us a clear reason as to why the elevated level. I'm sure that there will be many more tests run tomorrow.

His chemo cycle a couple of weeks ago went well. It was, thankfully, uneventful this time. He will have another full MRI on 6/14 and will go to stem cell transplant shortly thereafter.

Please keep Aidan in your prayers. We are hoping for a very short stay here in the ICU.

I will update you as I am able.

Mother's Day

I wanted to share some pictures of Aidan

from Mother's Day at Uncle Dan's.

Aidan's fighting spirit shines through ...


Aidan, Kitty and Ron

Had to post one with Gram too!

When he laughs it makes my heart smile.

He has always been a ham for the camera!

Look at the sweet face and all his peach fuzz!

_

Please keep Aidan, Kitty, Ron

and our enitre family in your prayers.

Aidan still has a long fight ahead I have

hope and faith he will beat this.

Lots of Love- Patty

Aidan Update 5/13

Good morning friends,

I write from Children's. Aidan is in for his 5th round of chemo. Currently, he is in the procedure suite for his routine audiogram (one of the chemo agents he receives is ototoxic, so his hearing is monitored closely).

Aidan has had a couple of very good weeks at home. He has been happy and feeling really well. We were able to have a couple of fun outings...Mother's Day at his uncle Dan's and he was even able to attend his favorite music class. So much fun! It is nice when we can provide some normalcy for him.

We will be in the hospital through the weekend. Hopefully, we will not experience any complications this time and can go home on Sunday. Aidan's 3rd birthday is on Monday and we would love to celebrate at home.

Please keep sweet Aidan in your prayers. I will be in touch.

K

Aidan Update 4/30

Hello dear friends,

Aidan is feeling much better. We will be discharged this afternoon after he receives more blood and platelets. We look forward to having a nice quiet weekend at home. This stay was much longer than anticipated. Aidan will probably be back at Children's during the second week of May for his 5th cycle. We should really get a place in the city as we are here much more often than we are home.

Aidan's belly is much better...no more cramping and much less poop. Everyone is happier.
He continues to hemorrhage from his bladder. He was on a morphine pump to control the pain from passing the blood clots. It was awful. He has been receiving platelets everyday (sometimes twice) to help control the bleeding. It seems to be improving slowly. We have been told it just takes time.

It has taken Aidan much longer to recover from this last chemo cycle (a common side effect from multiple rounds of chemotherapy). Usually his white blood cell counts are at zero for 5 days or so. Today is day 15 and we are just starting to see a few...very scary. I guess this has provided us a little glimpse as to what the next couple of months going into transplant will be like.

We have some great news to share! Aidan had his MRI on Monday and the scan was encouraging. His brain looks remarkably better and his spine looks about the same. If you recall, there have been questionable areas in the spine with previous studies. It is uncertain whether they are post-operative changes, scar tissue from the multiple surgeries and infection, or tumor spread. Typically, if you see good response to chemo in the brain, the spine usually improves as well. That leads one to believe that these changes are more likely to be scarring. That being said, when you are dealing with an aggressive tumor, the last thing you want to do is make assumptions and be led blindly. Aidan's 5th cycle and the myeloblative chemo prior to stem cell will be telling as to our next step if no further MRI changes are seen. We may need to make some very difficult decisions as to radiation treatment in the next few months. Sometimes it is hard to focus on just one day at time. We are just so very thankful that he has been showing good response and pray that we are blessed with wisdom to guide us in making good decisions for his future care.

That's all for now as I have to pack up so we can leave downtown just in time for Friday rush hour traffic. It's truly absurd!

Thank you for all of your good wishes, prayers, and support. They are so appreciated.

Aidan Update 4/18

Hello friends,

Aidan has been busy...I will start with the good news. Unfortunately, it's true, not so good news follows.

Stem cell harvest went well. They were able to get a very good collection. Enough cells for more than one transplant if need be. Hopefully, he will engraft well with one, but a back-up is comforting.
Another positive note...Aidan has completed his 4th cycle. Only one more to go and then on to a myeloblative high dose chemo regimen immediately prior to stem cell transplant.

Now for the not so good...this past cycle was very rough on Aidan.
One of his chemo infusions is bladder toxic and Aidan has been having visible blood in his urine. He was sent home on IV fluids continuously to flush out his bladder. Hemorrhagic cystitis can last two weeks or two months. We are hopeful that it will resolve well enough so that he is able to move forward with his 5th cycle in a couple of weeks.
If you are eating, put your sandwich down or skip to the next paragraph. Aidan has acquired a very nasty stomach bug (c diff for all you medical folks). Terrible stomach cramping with multiple episodes of mucousy diarrhea (oh the diaper rash)! A scary bug for an immunocompromised patient.
Another lovely side effect of cumulative rounds of chemo is mucositis. Painful inflammation of your GI lining from your mouth to your bottom. Enough said.

This is where Aidan gets busy! We were released from the hospital on Tuesday afternoon after completion of his chemo. I brought Aidan back through the ER on Wednesday night after changing a diaper that had more blood in it (sorry). He was re admitted. He was released on Thursday night about 11pm after being given fluids, blood and a unit of platelets. He had labs drawn again on Friday and had to come back for another unit of platelets . It is now Sunday...yep, I am writing from Children's. He was admitted this afternoon. The past 2 days have been awful for him. It has been difficult to watch. He has been in a considerable amount of pain and has been unable to keep his medicine down, let alone any nutrition. Thankfully, they are giving him morphine for his pain and he is resting comfortably. I am hopeful that his doc will start him on IV nutrition tomorrow. We are hoping to quickly resolve some of these problems and that this will be a short stay.

Everyone asks "what can I do"? Continue to keep Aidan in your prayers. Visit Life Source to donate blood and platelets (yes, you can donate those also). Resources are always too low (and Aidan is keeping the blood bank busy).

I will update with future happenings. Good night.

K

Aidan update 4/3

Hello dear friends,

I hope this e-mail finds you well. Aidan is doing good. We are enjoying being at home. It is very nice to have good coffee and the ability to shower sans flip-flops!
We are slowly adjusting to what we call our "new normal".

Aidan will be back at Children's for a six day inpatient stay beginning this Wednesday 4/7. He will undergo stem cell harvest on Wed and Thurs. Thurs night he will start his prehydration fluids and his 4th cycle of chemo will start on Fri. Hopefully, we will be heading back home on Monday 4/12.

A little about stem cell rescue...
It will be necessary for Aidan to have a stem cell transplant at the end of his chemotherapy regimen. Medulloblastoma is a very aggressive tumor and requires a high dose chemo protocol. This high dose chemo is slowly destroying Aidan's bone marrow and therefore, his ability to produce his own blood cells. During stem cell harvest, Aidan's stem cells will be extracted from his blood and frozen. (He is currently being given a drug called neupogen which actually moves these stem cells out into peripheral circulation from the bone marrow). After he completes treatment these stem cells will be given back to him through a transfusion. This is going to be a big hurdle for him in the next couple of months. I will update you with info as we move forward.

Our little man is doing very well in day rehab at Marianjoy. We are very fortunate that we live so close. Aidan has speech and occupational therapy for 2 hours in the morning. We are then able to go home for a few hours to have lunch and a much needed nap. Then back for an hour of physical therapy in the afternoon.
We are seeing good progress everyday. I am so proud of him...he is working so hard. Yesterday in physical therapy, he actually took 3 steps...his first since December 20th. It was like watching him walk for the very first time all over again!

Thank you all for your prayers and acts of kindnesses (making dinners, bringing groceries, running errands, etc). We are so blessed to have such great friends!
Aidan has touched so many people's hearts and we thank all of you for touching ours.

Have a good Easter!
Hope and peace,
K

Wheaton Bowl - RSVP REMINDER!

REMINDER

Wheaton Bowl Fundraiser is Friday April 16th!!

Please RSVP to any of the people below ...
Amy Johnson ajohnson@emhc.org
Lisa Hernandez lrzorc@yahoo.com
Grace Balinski gbalins@emhc.org

Thanks!
Aidan's Army at Elmhurst Hospital Pharmacy

THANKS!

Hello Everyone-

On behalf of my entire family, I wanted to thank all of you who attended the All About Aidan Fundraiser and all of you who donated directly to Aidan's trust!! Our family is truly blessed to be surrounded by such caring and generous individuals. I hope all of you enjoyed it as much as we did. Unfortunately I only took a couple of pictures. :( If any of you have any great pictures from the fundraiser please email them to me pmcmahon9@yahoo.com!

I hope everyone has a wonderful holiday weekend, Enjoy the great weather!

Love - Patty

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.