Hi all, again I am sending you Tracey's message from the Childrens' Hospital Care pages.

PLEASE CONTINUE TO KEEP HIM IN YOUR THOUGHTS AND PRAYERS, AND TOGETHER WE WILL "MAKE HIM BETTER"

Love, Charlotte

May 01, 2008 at 09:15 PM EDT
LET THE HEALING BEGIN! PRAISE GOD WE ARE FINALLY HERE.

Tristan and I were out of the house by 8 am this morning. We dropped Ruby off at doggy daycare and then on the road to a new life.

Today was not any easier then last week, but maybe harder because it's for real this time. Tristan's counts improved and the doctor said we can start the pre-regimen. Once we were settled into his room it was time to go to the procedure room for a triple dose of chemo in his head. Tristan did really well after the procedure besides a little dry heaving. After about an hour I was able to talk him into getting a pizza. I ran down to Little Caesars for his favorite pepperoni pizza, he ate 5 pieces.

Tristan received the Rituxin today and did really well, so well he wanted to do laps around the halls. This was hard because the nurse wanted to do vitals every 15 minutes we managed to get 1 lap in. Back in the room he had me hang his basketball net and he made shots for about an hour. The occupational therapist visited today along with the rehab doctor. I was very pleased to see his doctor was proactive in ordering the therapists. The rehab doc was happy to see Tristan up playing basketball. Tristan told the ot and the pt that he would like to build up his biceps so they are bigger.

Tomorrow and Saturday Tristan will receive the ARC and VP16 chemo. Sunday, Monday, Tuesday, and Wed he will receive other chemo's. Thursday will be a day to rest and Friday the 9th will be the transplant. Because the cord blood is a different type of blood the doctors would prefer to infuse the cord blood in the PICU. Tristan will receive one on one care there and should be back in his room Saturday.

What a strong and brave young man Tristan has become without a choice. Today he said with a big smile on his face, "What a great life I have, thank you God." I was not expecting him to say that and was so happy to hear those words from him. The simplest things now make him happy. Like a private room, the volunteer that stops by to greet Tristan, the kindness a nurse may share, or the person who brings their dogs to visit the children. Tristan can now recognize and appreciate the small things in life. There are so many lessons for us all to seek I pray we find them.

Please remember all the children that need our support and prayers. We have met some true heroes while in the hospital. I continue to pray for strength and comfort as we head into the healing process. We are at the mercy of our Lord and need to believe and have faith.

Sweet Dreams and God Bless,

Tracey

Hi Everyone,

I am sorry I have been a little lax in getting out the news lately. Tristan is now waiting for his bone marrow transplant which will be scheduled the second week of April. He has only had to go to clinic twice a week for the last three weeks to have his labs checked. After the chemo that he had for a solid seven days in March, it takes a lot out of him and they have to build his platelets and hemoglobin back up. He has been home from the hospital for at least three weeks and we are all loving it. He looks good, he feels good and he is good!!!! They say he is in remission because they have not seen any cancer cells with the naked eye under a microscope since his last test(s). We are sure that with all the positive thoughts, prayers, and love, filling the universe with Tristan since this began, how could there be any better outcome that him feeling so good right now.

Monday twelve of us went to the Piston's game with tickets that were donated by a family that wasn't going to be able to use them. So we were in their suite and enjoyed a game with Tristan and the Pistons.
Last week he was given tickets to Tayshawn Prince's suite, they went but he was ill and they left before the game even started. So this was a bonus getting suite tickets the way we did.

Cousin Alex, my youngest sister's daughter, will be in town on the 4th of April to see her cousin Tristan. It is Alex's birthday, April 5th and she asked to come to Michigan from Florida to see him. Alex will be celebrating her 16th birthday here in Michigan with her cousin. She has not been here for five or six years, so it should be a wonderful visit.

Tristan spent the night at his Grandparents house Saturday night. He woke up Saturday morning at 8:00 and wanted to know if he could get in the shower and get ready for his grandparents to pick him up. We have not seen him get so excited about something in a long time. It was very sweet.

Keep your loved ones close and hug them every chance you get!

Remember together we will "MAKE HIM BETTER"

Love,

Charlotte

These are Tracey's words from the Children's Hospital Care Pages. This is her update today.

March 05, 2008 at 12:22 AM EST
We are truly blessed this day...

Tristan had clinic yesterday and needed platelets again. We also met with Liz, the bone marrow coordinator. Liz informed us Tristan would need a x-ray of his lungs and an EKG. We were able to get both of these tests done yesterday after clinic. Although Tristan was not happy about the longer day at the hospital, I have to say he was very cooperative once he vented.

I am proud of his strength, courage and faith as he matures and fights for his future. May we all learn from his innocence and treasure everyday we have.

These tests are needed before the collection of his own stem cells. They will be frozen for back up just in case the donor cord does not graph. The collection will be sometime next week at Karmanos in Harper Hospital. Tristan already became buddies with a male nurse after they bonded with their sports talk. The nurse told Tristan that they have all the ESPN channels. The collection will take about 4 hours, so they say.
We have clinic again on Wednesday. Dr.Savasan the Bone marrow doc wants Tristan's blood work done again to see how soon it will be before he will be ready for the collection and when Tristan can stop the daily Neupogen injection I have to give him. You know I always wanted to be a nurse, but a little bit of schooling would have been nice first. Anthony laughs at my technique when I give the shot and says he never saw a nurse give a shot like I do. I asked him if he wanted to do it, but the tough guy chickened out.

Thank you God for our neighbors, Ron and Belinda, who whipped up dinner for us tonight. Tristan's school for donating the lap top. Matheson Heating for fixing our furnace at no charge. My old work buddies from Mac Valves for their fund raiser this past month. My job for their support and disability program offered to employees, Anthony's job for their understanding and generosity. We have been blessed with so many generous and caring people the list is endless. Of course, I can't forget the Doctors for their intelligence and wisdom, as they research and cure our son. God has blessed us and we no longer have to ask why our family was chosen for this journey. Thank you for taking the ride with us.

God Bless and may peace be with all the families we have met at Children's.

Together we will, "MAKE HIM BETTER"!!!!

The Saputos

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