Tracey wrote this the day after they got home from the hospital.
Please remember to keep him in your thoughts and send him positive and reinforcing vibes, thoughts, and prayers, I don't care what you call it as long as it works. Charlotte

February 26, 2008 at 10:49 PM EST
Home Sweet Home....

Tristan was discharged from the hospital yesterday, he strutted out with his Superman balloon. How appropriate! The other day he asked me why he does not get balloons anymore, so of course I had to get one for him. If I had known earlier that I would have gotten this big smile from him I'd get him a balloon every week. We try and do something special with him after every round of chemo just to lift his spirits.

We did not get discharged until 5 pm, but we have come to expect this. I used to watch the clock and breathe down the docs neck until I realized this was the way it was going to be. The more I pushed the slower everyone seemed to be. One day I was at my boiling point and thought I would lose it. I could feel the tears about to explode from my eyes when a calming affect came over me, and I realized I had not asked God for patience through this journey. I stepped out side and prayed for patience and guidance...I truly understand how important each and every medical staff personnel is... what their job means for Tristan... with out them where would we be? Who would care for my sick child? I had not accepted that my son had cancer and that he is fighting for his life. Until I had accepted this cancer as part of our everyday world I would never have peace. Six months later I am finally at peace with it! I wanted to believe Tristan was different than the other courageous children we had met back in July. We would soon learn he was no different, we had not been spared the words no mother should ever have to hear, "Your child has cancer."

Dr. Wang, Tristan's oncologist returned from vacation on Monday. The Dr. performed another Intra Ommaya using the Rituximap. The only side effect so far is nausea right after the injection. We will have to try and medicate earlier with the anti nausea med. An MRI was also done Monday morning all is clear. Tristan is paranoid that he does not lie still enough for the scan to be clear, he is worried that if he moves they will not see the cancer cells. After the relapse he thought it was his fault since he moved a little bit in the last MRI he said the doctors could not see there were cancer cells hiding out because he moved. The MRI techs assure him he was perfect and that all the pictures were great. Not once scan had to be redone.

Since we have been home I have to wonder if they even gave him chemo, just because how well he is doing. Breakfast, lunch and dinner came easy for him along with the fluids. Tristan and I played bowling on the Wii, I bowled a 195 not that I am bragging. Anthony has a new bedside buddy when we are home. Tristan loves to snuggle with Dad before bedtime. How can I say no?

The next plan is to let Tristan's counts recover from this last round of chemo. He will then go in for the harvesting of his own stem cells in about 3 weeks at Karmano's this is just a back up in case the donor cells do not graph. The pre regimen chemo will start soon after to permanently kill his bone marrow and last but not least the transplant of life will start. Thank you God for blessing us with a match, we are truly thankful to the parents of the baby boy who donated.

Together we will, "MAKE HIM BETTER".

Good night
xoxoxoxoxo

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