Mouth Sores

What a trooper Alec is, even with all his mouth sores he continued to try and drink. He still has not eaten anything but continues to try and drink. Several attempts have been made trying to insert the feeding tube and have been unsuccessful.
His plastic tent breathing treatments are still going on, 8 hours a day he spends in this plastic tent, and he is such a trooper he does it. His ANC is still 0 which is to be expected. His body is covered in rashy itchy skin. His skin is also peeling, like a sun tan peel. Our friend Hannah made Alec a beautiful card which I plan on scanning and posting by tomorrow night for all to see, what an artist! She drew a picture of Jack and it looks just like him :0)
Well I must run, keep the faith.
Love,
Amy

Ford Motors

As some of you are aware, my 2002 Ford Expedition was diagnosed of needing a new transmission. This comes from a finanical oil changer. In any case, I took my disappointment to Ford corporate headquarters asking for help, hoping they would reach out at our time of need and knowing that my truck is a necessity being we live so far from the hospital and Alec needs to make weekly trips here after his transplant.
They DENIED to help us. They claim there is nothing they can do. It's sad when you try to continue buying an American made product to support our economy and an American company denies helping a family when they truly need it. Honestly, what is a rebuilt transmission really worth to such a large company. Our family has lost faith in Ford and will never buy a Ford again.
*Stay tuned for a news report on it.

Rough Patch

Alec has been having a difficult time lately. Mouth sores and throat sores are present. His skin is changing colors, very deep, deep tan. They attempted the feeding tube and he vomited it up accompanied with a nose bleed. He has been getting platelets pretty much every other day. His pressure is sky rocketing again 140/100 he is one pressure medicine to control it. Fevers have been in check knock on wood. To date though he has only needed 1 transfusion. He is weak and just wants to go to Disney to train to be a Jedi, soon enough my son, soon enough.
He has not eaten but continues to ask for different foods, like spinach ravioli's from the price club and carrots, which of course he can't have. No fresh fruits or veg tables for a while at least 6 months. He is cheered up by a new favorite movie Spirit, our friends who we met here at the hospital had given Alec a bag of goodies and when he found out it was from his friend Hannah he smiled from ear to ear and couldn't wait to watch his new movie.
I know I have not been keeping up to date as often as I would like to, but I have gotten all your phone calls and prayers thank you so much.
Till next time keep the faith.
Love,
Amy

Fever Has Shown It's Ugly Face Again

It was inevitable that Alec would develop a fever. His counts have bottomed out and he has not eaten in the past (2) days. They had to access his port last night to run blood cultures and make sure there is no infection in his port, it took (3) attempts to access him. He is feeling blue and takes alot of effort to put a smile on his face. They stopped his mouth care temporarily and switched his oral meds to IV. I was concerned with stopping the mouthcare because of thrush and mouth sores but they said he is going to get them no matter what, they want to stop the vomiting and the mouth care makes him get the yuckies, as we call it.
Today is the last day of his chemo, Thipene and VP-16 (etopiside). Then we have 2 days of rest and transplant on Wednesday :0) I am told he should recoup pretty fast after transplant. Alec continues to need 4 baths a day because of the high doses of chemo can leak out your pores and cause sores. Oh, we were also relocated to the transplant unit itself as opposed to the old transplant room. We had some major issues on the floor and the Dr. was not comfortable having us over there because of his age and the attention he requires. Mark and wanted him transferred to the transplant unit. It's technologically advanced for transplant and the air is filtered much better over there and not as much through traffic, as there are only 8 patients allowed in the unit at 1 time and only parent visitors.
Kevin seems to be holding up okay through all this. He is happy this is Alec's last time in the hospital, he said he wants him home. Well I will try to continue to update you.
xoxox
Love,
Amy

1st Day of Chemo Under Our Belt

We finished our first day of chemo, I made sure he started both of the Anti-nausea meds. He is doing great!! He ate just about an entire loaf of garlic bread and some of Mommy's famous spaghetti, Thank you Robusto Ragu :0) He doesn't like any hospital food so the Ronald McDonald house is wonderful, they have volunteers and various restaurants that cater for the residents staying there so I am able to bring Alec real food.
I have been driving the Dr.s a little crazy with what he can and can't eat. He is not aloud to have any fast food, peanuts, fresh fruits and vegtables for a while due to bacteria. He is although allowed to have anything processed. Just so you know Pizza is not considered fast food :0) Any kind of frozen entrees or canned goods he can have, which is good because he ate an entire can of spaghetti o's the other day when my husband was here.
*This eating is also without the aid of megase, his appetite stimulant, just with his good old appetite.
We got some exercises today, we did a few laps around his room. He is in isolation and can't leave his room. We played alot of games and started a daily journal, I just have him draw a picture of what comes to mind, describe it to me, and then I have him draw me a picture of how he is feeling. All smiley faces so far :0)
I was very nervous on how he was going to do with all of his oral medications, he is on 7. They consist of antibiotics, anti fungal, gallbladder protectant. He vomits usually from his meds but we told him about the angio tube and he cried so we are holding off because so far he is tolerating them; with many thanks to an M&M chasers. I am told he will definitely need one but we'll see.
There was a book sale down in the cafeteria I had a field day with. Alec was excited to see even more books. I got him some books he could read to Mommy, I told him it wasn't fair I had to read to him all the time, that I need story time too. He laughed.
Well that is all for now, thank you for all your prayers.
Love,
Amy

Great Start!!

We were admitted yesterday morning at 5:00 am. Alec was excited that he got to spend the night at the Ronald McDonald house with us. I think it was really good for him to know where Mommy and Daddy have to sleep; as we are not allowed to sleep in his room. It's for his own safety.
The broviack was put in with NO complications, yeah!! He was very uncomfortable so he was given some morphine for the pain and then he was fine. He is very excited this is our last stay at the hospital for treatments. He is also very excited that he will be given sleepy juice again to take the broviack out upon discharge.
He ate an awesome breakfast, 2 whole boiled eggs, bread and Gatorade which is really good for him. He is now asking for M&M's
Kevin spent the day with us yesterday, Alec was really excited. It will be hard on both of them to not be in contact with each other for 2 months. They are really close. Kevin can wave to him through the window but it's not the same. Well I have to go get those M&M's, bye for now.
-Amy

The Backyard Theatre

Over the summer we were invited by the very talented Mrs. M, (sorry have to with hold name till I have permission to say so) to watch an amazing performance by a group of local talent that belongs on their own reality T.V. show

Mickey made a sup rise appearance and Alec and Kevin drew him pictures.

Alec was so excited.

Thank you for everything!!

Our Amazing Center Moriches Community

We arrived home after a long day at the hospital to this collection of donated books from the book fair this past April.

Alec is excited to take these books along for our long stay. Thank you Jeanette and Anna and the CMPTA for your prayers.

We will be admitted at 6am on Monday morning. Alec will have his broviack put in at 7:30am, and Tuesday will start heavy chemo. The following Wednesday will be "Transplant Day" I'll keep you update daily if I can. Love to you all.

-Amy

A Family Outing Before Transplant

We enjoyed a wonderful family outing yesterday, on Memorial Day with our very dear friends, and Alec's Godfather: Uncle Chris, Aunt Lori, Danny, Kassie, and Ryan.

Alec's favorite part was riding the bug carousel and riding a real camel :0)