Hi All,

I have included a message from Tracey. Children's hospital provides a web-site called Care Pages and Tracey is the manager of this one that she calls, "Tristan the Warrior". I don't think everyone can have access so I am updating you on what she has written on the care pages.

As she states in her message, he has had quite a round of chemo and still has four days to go before he gets to come home.

Thanks to everyone that thought about him on Monday, it worked because he came through it with no problem that we know of, so far. There are side effects with this non-approved drug Retux, and we did have to be watchful for the first 24 hours. But he truly is a warrior.
Please continue to keep those thoughts circling the universe for this miracle boy, because remember together we will "MAKE HIM BETTER"

What can I say, my son is the boy of steel. Look out Superman because the warrior is in town.

Tristan was admitted into the hospital on Monday the 18th for his last round of chemo before he starts the pre regimen chemo for the bone marrow transplant. This is the round I was worried about because Tristan received an antibody called Rituximap that is not yet FDA approved for intrathecal injection. What I mean is injecting the drug into his spinal fluid through his Ommaya Reevoir located in his head.

I will update later Tristan wants me to watch a movie with him now.

We all know he's the boss.

Peace

Hi Everyone,

I hope your week was a good one.

Tristan goes to Children's Hospital tomorrow to have the Ommaya reservoir put in. I believe the time is 8:00 a.m. for the surgery. After the surgery he will probably come home. The doctor wants the area to heal a bit before they start the Retuximopab (Retox). He has been home since last Saturday but getting an anti-biotic every 8 hours for the infection.

This would be a good time for everyone to come together in their mind and think about him, about 8:00 a.m., as he goes through the surgery to have this reservoir installed in his head.

The whole ordeal has changed Tristan and I am sure if it happened to one of us, we too, would see some changes in ourselves. He seems to think that he is a freak, that he is ugly, that his voice is not like it should be, yeah you are going on 12 years old and your body is changing. That's what I tell him, but I don't know how I would feel if it was me. Pissed, that's how I would feel at first, then sad, all of the feelings that go with a disease like cancer. We keep him optimistic, or rather we try to, but it is not as easy as one would think. But we will not give up on him, for any reason.

Keep those thoughts circling and keep saying, "MAKE HIM BETTER"

Love,

Charlotte
Tristan's Mimi

Last week, Tristan did not have chemo, the doctor decided to give him a break, because the plan was to check his numbers and kidney function to see if he could tolerate the chemo. And they were going to proceed with putting in the reservoir on the side of his head, going into the ventricle side of the heart. The way it works is the chemo, Retox, will go into this reservoir and slowly get into the blood stream that goes to the brain. I didn't know this either, but the brain does not have any feeling. I know it seems weird, but I have it from a nurse that knows what she is talking about, that the brain has no feeling. Of course the reservoir is put in by surgeons and that will probably hurt for a while. The first week they put in the Retox, the next week they put in another type of chemo, then Retox, then chemo, then Retox, then chemo, then retox. He will have days in between treatments to recover or to have a break....this is a clinical trial...

Dr. Wong has researched Beijing, France, Sweden, America, about ten different countries,Oncologists, to find any cases of this returning to any of their patients, and no one has a case like this. She is truly dedicated to finding something that works for this "miracle guy".
She is one of those doctors that we all would want on our side.

The BMT Doctor has found another cord match for the bone marrow transplant, this one is better than the other in the markers that match with what they need to match. They also have two live donor matches, but say that the cord match is best way to go.

He went to the hospital last night with a fever, which generally means he has an infection somewhere. His infection is in the Broviack, which has two different lines that are connected but receive different meds. There is some type of bacteria growing in one of the lines. So now he is taking antibiotics for it and until it is gone and his kidney function is up, it is currently at 74%, and needs to be at least 90%, everything is on hold until this infection goes away.

Can you believe it is raining on January 29, 2008. I am listening to the rain or the pouring of the rain. Weird!!!!

I will update you as soon as I know what and when he will be getting the reservoir and this Retox.

I know I ask this every time I send you an update, but I have to ask, please, please, please keep him in your thoughts and prayers....we need all of the positive, optimistic, loving, caring thoughts we can get. Send it to your family and their friends just to add more thoughts into the universe, circling Tristan, making him better.....

LETS GET THE WORD OUT, "MAKE HIM BETTER"

Charlotte
Tristan's grandmother

Things have been going somewhat smoothly lately for Tristan. As smooth as they can be, I suppose. He has been receiving chemo through his spinal fluid on a weekly basis, since January 4th. He seems to be weathering this chemo okay. He had chemo on Friday and I saw him yesterday. His friend Pat and he were playing video games. He was feeling good even though he had just had chemo the day before.

They found a cord match of stem cells for him, except that in a cord match they want 6 out of 6 markers to be in place. This match is 5 out of 6, but they can still use it. The Doctor put it on hold for him until they are through with some of the other treatments they want to try.

The Doctor believes that there is a rogue(mother) cancer cell somewhere in his body swimming around and has now become immune to the chemo they are using. If they stop the chemo treatments, the cancer will continue to grow at a more rapid speed and this way they can continue to control it, somewhat. The plan is to give him chemo right in his head, Dr. Wong seems to think that if they give it to him there it may get to the rogue cancer cell(mother) and kill it. This has only been done once and that person survived as far as we know. The doctor has been doing a lot of research and as Tracey says they only publish the success stories in the medical journals and this person was in that.
At first Tristan was resistant to having a hole in his head, but his Mom has convinced him that we need to try everything and stay very very hopeful. He is a "miracle boy" and he will continue to be a "miracle boy" after all of this treatment. He may be very sick once they start this other chemo procedure and he will be in the hospital for a while, please send him cards or emails, he now has a laptop computer compliments of the Walled Lake Schools. But the real thanks goes to two educators at his elementary school. Thank you Patty Wilson and Linda Day for your help in getting him this means of communication, that he is using every day. His family and I thank you from the bottom of our hearts.

For those of you, that would like to send him an email, even if it is just to say "hi", his address is: nba2k8360@yahoo.com. He will respond to your email, it may take him a few days, so be patient.

That's the update right now, I will keep everyone informed as this progresses.

Charlotte
Tristan's grandmother

Since my last update, Tristan came home on New Year's eve and was home until last night. It seems that the mega doses of chemo that he had in December, have made him very, very sick. High fevers of 103, sores in his mouth, and throat, that have made it unbearable for him to eat and drink. Everything hurts, he's lethargic and not very happy. Being in the hospital is good because at least he will get hydrated by IV to keep his strength up. They have to check for infection about every couple of days because of the sores in his mouth and throat. Keeping him infection free is of the utmost importance at this time.

They are checking the Bone Marrow Transplant donor bank for a donor, and as soon as they have one, he will probably get the transplant. And that would be best for him, because this will give him a new immune system, since his is compromised. But he will be very sick even after the transplant. It will be like having the flu for a very long time.

As soon as we can find him a laptop, hopefully everyone can send him messages of support, maybe that will help him through all of this and at least raise his spirits, knowing how many people care about him.

If you would like to help, gas cards would be a tremendous help to them, because of all of the trips to the hospital and clinic. Or just keeping them in your thoughts and prayers as you go about your daily life is a tremendous support mechanism. How could it not be with everyone sending the same message throughout the universe.

Charlotte
Tristan's grandmother