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.