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.

Friday, February 12, 2010 12:19pm

Good afternoon dear friends,

Aidan has finished his 2nd round of chemo yesterday morning. He tolerated it quite well...much better than anticipated.

His fevers have significantly decreased over the past 2 days. We were able to change some of his antibiotic coverage as we were concerned that was where the fevers may have been coming from. So far that change has proven beneficial.

Aidan is beginning to be more efficient with eating/swallowing. He even ate a cookie the other day...exciting for everyone!
He continues to make great progress in physical therapy. He is sitting with some support and is beginning to put a little weight through his legs. I would love to see him actually walk out of here when the time comes.

Moving forward...
We are anticipating that in the next couple of weeks (after Aidan's blood cells rebound from the chemo) he will have surgery to internalize the drain that is currently in his ventricle (shunt surgery). We are hopeful that some reconstruction of his skull can take place at that time.
Another MRI will be performed in the next few weeks to see the progress of his chemo treatments. Then he will begin his 3rd cycle.
If all of the above go well...we will probably be able to leave Children's in late March. Depending on his strength at that time, we may be spending some time at Marionjoy (a rehab facility). One step closer to home.

Please continue to keep our sweet Aidan in your prayers. I will continue to keep you updated as I am able.
Thank you for all of the Valentines Wheaton Montessori School!
Enjoy your weekend.

Monday, February 1, 2010 6:00pm

Good evening dear friends...

It is a good evening! I have attached a picture of my Aidan. Take a good look...it is a picture of a boy that is slowly beating cancer...
We have learned the MRI results. The cerebellum has shown a moderate decrease in tumor burden. As far as the spinal cord...there was increase in signal intensity around the initial tumor site extending into the cord. Aidan's neurosurgeon said it is not uncommon to see this type of image postoperatively. Or, it is possible that it may be an infection as it is in the location where the 2 previous drains were. Or it is possible that it continues to be evidence of tumor spread. Aidan's oncologist was obviously pleased with the evidence of tumor regression and stated that the next round of chemo will be telling as to the status of the spinal involvement.
Therefore, he will begin round 2 of chemo tomorrow. I would have never guessed that I would be so happy to hear that my son could have chemo.

More good news...we have a new "address". Since I have last updated, we have been moved from ICU back to the neuro unit.

Physically, we are continuing to see good improvement in Aidan.
He is sitting up with assisstance and eating some small meals of pureed baby food. He continues to be mainly fed via NG tube for his nourishment. Communication is still lacking. However, he is starting to be more expressive with little groans and some more emotional crying (which is a very good thing). Today we have even seen a smile and a little giggle!

We thank each of you for your well wishes and ask you to continue to keep us in your thoughts and prayers as Aidan has a long tough road ahead. We are just so very thankful that he can continue down that road...one step at a time.

As always, I will keep you updated as I am able.

Thursday, January 28, 2010 8:20pm

Hello all...
Aidan is having his MRI tomorrow (Friday) morning. He are hopeful and optimistic that the results will be fantastic.
Please keep us in your thoughts and prayers.
I will be in touch.

Friday, January 22, 2010 11:15am

Hello friends,

I first want to thank you for all of your cards, e-mails and well wishes.
Aidan remains in the icu...
We have been battling high fevers and some infections due to his immune suppression from the chemo. We expect to see some rebounding of his white cells throughout this next week.

Some very positive things have happened over the past 10 days.
Aidan was able to come off of the ventilator 2 days ago without incident. He has been weaned off of his sedation, steroids, and high dose sodium/mannitol IVs for the brain swelling. His neurosurgeon has removed 2 of the 3 drains in his head. They were able to remove his arterial line and his catheter. Our little man is being, what we call, "de-tubed" left and right...it's very exciting (clearly, we have been here too long).
Aidan is tolerating his increasing NG tube feedings well. However, he continues to be on IV support so that his nutritional needs are met.
We have spoke to his neuro-oncologist regarding his next round of chemo. Aidan will have another MRI prior to see disease status. As I have already shared with you, Aidan has the most aggressive subtype of medulloblastoma. If the tumor spread remains relatively unchanged (or better yet, shows tumor regression), he will begin his next round within the next couple of weeks. If, however, we see a significant increase in tumor spread, it is unlikely that we will move forward with further treatment. We are hopeful that the scan is reflective of the positive response we saw immediately after his first round of chemo.
We ask for your continued prayers to restore Aidan to good health.

Hopefully, the next time I update, we will be back to the neuro/oncology floor as now there is little reason to keep him in ICU.

Again, thank you for all of your kindnesses and I will update soon.

Tuesday, January 12, 2010 9:52pm

Hello dear friends,

I write again with positive news...

Aidan has completed his first round of chemo and tolerated it quite well. He now has 21 days off until round 2.

He started breathing over the ventilator (taking some breaths on his own) yesterday evening. That itself is excellent news...brainstem function is a good thing. We were very worried due to the amount of compression from the cerebellum as to the integrity of the respiratory center. Tears of joy...

Aidan had another MRI this afternoon which demonstrated considerable improvement in all areas. At first it was hard to believe that it was Aidan's study as the difference was so drastic.

We remain in ICU and, if all continues to go smoothly, will probably be here for the next handful of days before transfer back to the neuro unit.

We thank you for all of your well wishes and prayers. Aidan has a long road ahead of him and we ask for your continued prayers for him and the success of his chemo. We also ask for your prayers to bless Dr. Tord Alden and his neurosurgical team as he has truly saved our son's life twice in the past few weeks.

I will be in touch with updates as I am able.

Saturday, January 9, 2010 9:46pm

Hello friends...

Thankfully, I am finally writing with a little bit of positive news.

We are thankful that Aidan has stayed out of surgery for the past few days (thank you uncle Matt- Matt for having a talk with him "no more shenanigans").
He had another MRI today which showed some improvement in that his cerebellum has relaxed a little bit more into the space that the surgeons had made for it in the last couple of surgeries.
The drains are performing well and are keeping the CSF from increasing in the ventricles.
As I write this he is undergoing his 2nd doses of chemo. Day 1 went very well. So far so good. Aidan remains in the ICU on a ventilator and we anticipate being here for a few more days. Hopefully, he will move back to the neuro unit in the coming week.
I ask that you pray for his chemo to be a great success.
We so appreciate all of your acts of kindness, prayers and well wishes.
I will continue to be in touch.

Thursday, January 7, 2010 9:45pm

Hello dearest friends,

I am hoping that one day soon, I will update with good news...

I believe that I last updated you on the 5th when they took Aidan to surgery to perform the craniotomy and remove part of his cerebellum.
After that surgery, he was moved to the ICU.

Things were looking very good all day on the 6th...Aidan was responding to our voices and opening his eyes to look at us. All was well until about 5pm. His symptoms began again. Another MRI was performed which showed a pocket of fluid filling up behind the cerebellum not allowing it to descend into the space the surgeons made for it the day prior. Aidan was, once again, immediately taken back to surgery. They took out more the the bone in the back of his head and removed even more of the cerebellum (1/3 in total of the left hemishere). They added 2 more drains so that fluid does not accumulate again in the posterior fossa.

Aidan remains in the ICU. The neurosurg and neuro-oncology team are unclear as to why Aidan's cerebellum has swollen up in the manner it has. It was decided today that he will begin his chemo tomorrow. We have run out of surgical options to create more room for the swelling and time is of the essence. The conditions for chemo are far from ideal. Aidan has 2 extraventricular drains and 1 subarachnoid drain in place and is also on a ventilator. His risk of infection is extremely high. However, at this point, it is everyone's hope that it will allow for a decrease in the cerebellar swelling and begin his long road to recovery.
Please continue to keep us in your prayers. I will update you as I am able.

Thank you all for caring, for praying, for hoping....

Tuesday, January 5, 2010 11:51am

Hello friends

I am in complete disbelief that I am updating you again so soon.
As I write this Aidan is in surgery again. Over the past 24 hours, there have been some significant changes.
Aidan's cerebellum has swollen to the point where it is impacting his brainstem which basically controls everything (breathing, swallowing, vision, etc.) His surgeons are performing a decompression surgery which entails removing part of his skull and potentially part of the cerebellum itself.
Please continue to keep us in your prayers and I will be in touch.

Thursday, December 31, 2009 9:37pm

Hello dear friends,

I just wanted to thank you for all of your thoughts and prayers and to fill you in as to the events of this past week.

Aidan's pathology report came back to us early this week. He has the most aggressive type of Medulloblastoma. We have learned that the cancer has spread to his spine and is in the subarachnoid spaces. This has lowered his 5 year survival rate to 30-50 percent. Due to his age, he is considered high risk.We met with his neuro-oncologist and he said that he has seen high risk patients with tumor spread respond to high dose chemo alone and of course, that is our hope. We are enrolling him in a clinical trial using biologic agents in conjuction with high dose chemo that has shown promise in the laboratory. We are anticipating beginning chemo within the next couple of weeks.

In addition to this news, Aidan has been unable to keep any food down despite the anti-emetic drugs. You would not believe the vomiting unless you saw it. They are starting him on nutrition through his IV because he is expending many more calories than he is taking in. Shockingly, Aidan was back in surgery again this evening because his ventricles were filling up again so they had to replace the external drain. They are alluding to the fact that this is only a temporary solution and that early next week he will need yet another surgery to place a permanent shunt into the ventricle.

All of this has already been too much and chemo hasn't even started yet. My poor Aidan is braver than any little boy should have to be.

Please continue to keep our family in your prayers. I will keep you updated as I am able.