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