Cole's Story

LATEST UPDATE

Hi Dude! Here is the latest news.

April 2005

June 2007

October 12, 2008

Dear Family & Friends:

Exciting news! We are going home tomorrow.

Dr Fry met with my mom and said that my ANC was high enough that I may go home. Dr. Fry went on to say that this did not mean that I was "free". It will take many months, possibly a year, before my natural defenses are back to normal. I will be extremely vulnerable to infections and other sicknesses. There are restrictions on what I can and cannot do. These restrictions are for the next 100 days.

This came as a real surprise to us because we were looking forward to seeing all our friends and neighbors when we got home. Everyone has been so great and we wanted to personally thank everyone but I guess we will have to delay that for a little longer. Visiting will still be limited to only my grandparents until my defenses are back to normal. My parents and I hope that you understand.

My outdoor activities are to be limited and I am not allowed to be in any crowds. This restriction also applies to going to school and thus I will have to be home schooled for this school year. I am disappointed because I wanted to be able to go out and play with all my friends and I wanted to go back to school.

We will be going back to Children's Hospital several times a week for constant checkups and blood tests. We are told that after several months, we mey be able to go to the BMT doctor's clinic rather than Childrens. This will be better since the clinic is located in Virginia and we won't have to drive through DC anymore.

My papa is in the process of making a major update to my web site. He had planned to have it available Friday but decided to wait until I got home tomorrow so that he can include our home coming.

Love to all, Cole & Family

Friday, September 12, 2008

We have been getting request asking how I am doing, So mom and I asked my papa to send you a brief message tell you how things are progressing.

First, let me tell you about my brother Carson. As you know the BMT went well and Carson got to go home the same night. On their way home from the hospital, My nana picked up some pain medication and something that will build up Carson's blood. Carson stayed with his nana and papa Wednesday night. The next morning, Thursday September 4th, Carson wake up with some discomfort and my nana gave him some pain medication. He was fine for the rest of the day. Thursday when my dad got home from work he picked up Carson and took him home. Friday morning bright and early, Carson boarded the school bus and went to school. So he was doing really great and had no further need for any pain medicine. However, he has to take the medicine for his blood for the next 30 days and he says that he isn't too happy about that because it doesn't taste good.

Now about me! I did pretty well for a couple of days after my BMT. I got some platelets and of course medication to ward off any rejection. Everyone was surprised that I had continued to do so well. But it was not to last. On Monday, September 8th, I developed sores in my mouth, it hurt to swallow, and I didn’t want to=2 0eat. By Tuesday I was not feeling very well and they started me on morphine because both my mouth and my stomach were hurting a lot. As you know I have a “G” tube and they are feeding me through that. When they try to give me the required amount of nourishment, I start to have stomach pains and they have to either stop or reduce the amount of nutrient I am getting. That presents a problem because if I don’t get enough I will begin to lose weight again. On Wednesday, September 10th, I started to have a fever -- not a good sign. As luck would have it, I had developed an infection around my “G” tube. When I developed an infection around my central line while in INOVA, they removed the central line and treated me with antibiotics. My mom thought that they would have to remove the “G” tube. But the doctors told my mom that they didn’t want to do that because they needed the “G” tube to continue my feeding. It was decided that they will treat me with antibiotics and closely watch the site of the infection. Thursday, September 11th, my mom said that it looked like the antibiotics were helping because the redness around my “G” tube appeared to be less. Now if I could just get rid of the sores in my mouth, start feeling like eating, and stop having pains in my stomach.

Because I was doing so well the couple of days after my BMT everyone thought I might sail right through this BMT but as you can see that is not to be the case.

I guess that brings everyone up to date. Please keep up the prayers for us because they are so important and we are certain your prayers will get us through this difficult period in our lives.

Love to all, Cole & Family

Thursday, September 4, 2008

Dearest Family & Friends:

A quick note to let everyone know that the BMT went as scheduled yesterday. Both Carson and I did very well, but Carson did experi ence more pain than was expected. I was hooked up so that they could monitor me both in my room and at the nurse’s station. I was also given some pre-infusion meds. I had no immediate reaction when receiving the bone marrow. The first hour of the infusion is most critical because that is usually when a reaction will occur. The nurses monitored me very closely for the first hour and then checked on me frequently during the remaining 3 hours. The infusion ended about 7:30 PM and I was still doing fine.

My papa and nana left with Carson around 7:45 PM with a planned stop at the drug store for some pain meds for him. As of this morning, Carson is doing very well.

We all called Carson a hero and he got a Hero mascot from the medical staff.

I will fill you in with more details of the BMT in my next web page update.

Love, Cole

Monday, September 1, 2008

Dearest Family & Dearest Friends:

My web site has been updated with the latest information. This update covers my last month in the INOVA Hospital, Fairfax, VA. It was so hard to leave all the wonderful people who have done everything to help cure my cancer. We have grown to be a family. Me and my parents love and will miss them all.

As you will read in my update, I am now in Children's Hospital, Washington, DC for my BMT. My papa will post another update after my BMT.

So please go to http://colesstory.com/ and then click on the Latest Update tab. (Remember, if you type in the address there are two s's.)

Again, we want to thank each and every one of you for caring and praying for my cure.

Love, Cole

Thursday, August 28, 2008

Dear Family & Friends:

This is a difficult message to send. It might sound like I don't want you to come and visit me. Believe me I would love to have you here. Your past visits have been the one bright spot during all of my hospitalization and your visits have helped maintain my parent's sanity.

However, the rules at Children's Hospital, particularly in the BMT area, are strict. Also, I am at a critical stage in my treatment for my AML. I have begun an intense chemo treatment that will leave me with no defenses to fight infections. Therefore visiting must be restricted to only my parents, and on occasion, a visit by my grandparents. We are not allowed to bring any food (except my meals) into my room. Other items must be approved and sanitized before they can be brought into my room.

I hope that you all understand that you are very dear to me and my family. In the past, you have sent presents and cards. Even those items can not be brought into my room. It will be a very long hospital stay without your visits but the success of my BMT requires these extreme measures even though we do not particularly like them.

My papa has promised that he will be making an update to my web site very shortly; hopefully within a couple of days. The update will cover everything from my final days at the INOVA Fairfax Hospital to my ambulance ride to Children's Hospital in DC and my first couple days at Children's Hospital.

Thank you for caring and for all your prayers.

Love, Cole

JULY 5, 2008 TO AUGUST 3, 2008

As I remember, I ended my last e-mail message telling you that I was going to start my second round of chemo. My chemo treatments consisted of two types. The first round used Ara-C and Mitox and the second round used Ara-C and Elspar. We had hoped that my Absolute Neutrophil Count (ANC) would start to return to normal faster after the second round but that was not to be the case. Neutrophils fight against infection and represent a subset of the white blood count. We had planned on my ANC to start showing a count in approximately 10 days. We saw no count until the 20th day and that changed our schedule for my bone marrow transplantation.

Several things happened while we were waiting for my ANC to start going up.

First, I developed an infection called pseudomonis at my central line, which had been inserted in May. That required an operation to remove the central line. During the operation to remove the central line a nasogastric (NG) tube was inserted because I had lost 5 pounds and they wanted to feed me nutrients. I didn’t like the NG tube; besides the wrong size was used and I had trouble swallowing what little I took by mouth. An IV was inserted to administer my medications, etcetera. Shortly thereafter my IV failed and I was again operated on to place a peripherally inserted central catheter (PIC line) in my arm close to my shoulder and the NG tube was replaced with a smaller one. What else could go wrong? During the past couple of weeks I developed swelling under my eyes and my face also showed some swelling. They started me on antibiotics for what they thought was another infection. Since I was already nuetropenic and was receiving antibiotics for my central line infection this added more antibiotics. I was now taking 6 antibiotics over the course of each day. My ENT pediatric surgeon, Dr. Bahadori, requested a scan be taken of my sinuses. The scan showed that there was “stuff” in my sinuses and it was decided that they should operate to take some samples for pathological analysis and to clean out the “stuff”. Dr. Belinda A. Mantle, an associate of Dr. Bahadori, operated, and during the operation consulted with another ENT doctor and a pathologist. They all felt that I had a fungus infection in my nose. If it was a fungal infection it would require weeks of antibiotics and possibly another operation. They also removed my NG tube. Happy happy happy! Later in the day the results came back and it was indeed a fungal infection and was one of two types. It would require several days of culturing to determine which type of fungal infection was present. And guess what that means? This will cause another delay for my bone marrow transplantation.

During July, my mom, dad, and Carson went to Children’s Hospital. As part of my pre-bone transplantation, I was given a complete body scan and my parents took the results of the scan to Children’s. Carson got checked over and when he returned, he showed me the band aid on his arm and told me that they took about 8 vials of blood for testing. So we think that Carson is ready whenever the plantation occurs.

Not everything bad happened. Meg Lawless-Cossett from Teardrops to Rainbows came into my room pushing a cart full of gifts and announced that the gifts were from Santa and it was Christmas in July. What a surprise. I got so many wonderful gifts and my brother Carson was not forgotten either. He received a DS player. Can you believe that? We also received a Karaoke player for the entire family. It sure brightened up my day because I had been really down due to all the operations and testing that had been taking place.

Also last week a couple of my friends came to visit; Joey and Jack Capossela and their mom. They played games with me and it certainly brightened up my day. Most of the time our visitors are adults and, although I appreciate their coming and visiting, it isn’t as nice as having some friends to talk to and play games with. Before Friday I really didn't feel well enough to have visitors and I also slept all the time.

Well I have been in the hospital for about 51 days and I can’t tell you what the plans are for me and my parents. Just two days ago my ANC started to go up and thus I shortly might not be neutropenic and could possibly go home. That will depend on whether I can be treated with anti-fungal medications at home for my fungal infection. But then again, I might have to stay at the INOVA hospital or go to Children’s for my treatments. I am sure that my mom and dad will be talking to the doctors about what the future holds for us.So the schedule for my bone transplantation has been changed as follows ( If I am clear of the fungal infection.): transfer to Children' Hospital on Sunday August 24th, chemo treatments to start on Monday August 25, and the transplant operation on September 3rd.

For more information on Cole, please visit: http://www.colesstory.com/