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Beginning Our Journey
Apr. 1, 2008
Day 1 of our second half of intense treatment.
So far so good! Tristan woke up very upset to have me putting his cream on. It was so sad! He cried so hard. He would not take his amox. So he did end up missing todays morning dose. Mil said to just let it go because we had to go and there was going to be NO forcing it into him. It will work out ok because I really am looking like I am going to be one does short anyways. I got 4 more days today and if they gave me exact amounts... then I was one does short. Not sure what I do wrong. Anyways...
So we get to clinic and were early! We got there at 8 for our 8:30 appointment. So we wait. Get in and start treatments. He was very upset about the port access. But they do NOT hurt him. It is obvious by no reaction when the needle goes in. You can tell he does not feel it. But he cries anyways.
For his spinal he was a little goofy with his meds. Kept saying "Nunny, nunny" What he says for Mommy when he is being baby like. When I say "Say MOMMY" He can. Anyways... he was saying that and tensing up. They had to stop and give him a second to stretch and start again. He was stopping the flow with his muscles. But they ended up getting a good tap on him after that.
He had to drink and have IV fluids in him. The chemo he is getting this week is something we have never had before. And in order to get it, he has to be well hydrated. Which since he was not allowed food or water for the spinal... was tough.
Tristan had a MAJOR meltdown when I told him he had to drink his pop. (Caffeine to help him not get a spinal tap headache) He threw a crying fit. Not mean but sobbing upset. I think what was happening was the spinal tap meds were wearing off at the same time I was trying to get him to drink something.
Anyways... Nana came to the rescue with Cheesies And he ate them like a champ and then wanted to drink.
So with two bags of fluids, and 2 pops, Tristan was able to get his chemo.
He also had to pee in the bottles so they could check his pee to how diluted it was. To make sure he was hydrated. So they gave him these bottles that he LOVED playing with! (AND YES MOM THEY WERE CLEAN AND NEW! she cracks me up by asking that! Sure they would give him dirty ones!)
He was cracking us up, pretending he was an elephant. and putting cheezies in one, and more!
When we went to leave it was ADORABLE! Tristan was walking out holding his arm down straight and looking at himself and each of us like he was getting away with something. We did not tell him he was going home with it accessed. All the way to the parking garage we could see him eying up his mediport and then us. We sat down outside and he leans over to Nana and says "Hey Nana! They forgot to take my pinchy out!" I about died laughing! He was like - hey!!! look what I got away with! Or like the fish on the end of NEMO where they get to the Ocean in the bags and are like "now what" He finally got his wish. THey did not deaccess him but... now what? He had to take this thing home!?!?
He is doing well with it. He is guarding it but was in an AMAZING mood tonight! So far so good.
Zonked out on the way home
I think we have a long week ahead of us. The clinic told us to give him his Nausea Meds every 8 hours and do not let it go. Even if he is not sick give them to him to head off the Chemo sickies that he might have. We might get fever, vomiting, diarreha etc. We also have to get him to drink drink drink. That is going to be fun trying.
He is on a new Chemo pill at home for 14 days. It is harder then the other stuff. We will get home care for 3 days. And go back next Tuesday for another spinal and more chemo. Then we get two weeks off! And we hit MAINTENANCE!!! I cannot wait!
Maintenance will be once a month Chemo down at clinic (Vincristine) with 5 days steroid. Every day Chemo pills. Then the three weeks we are off clinic we will give him another chemo pill once a week. Then once every THREE months we get a spinal. And that is what it looks like for the next 3 years.
I am excited to get there! Keep praying! Thank you everyone! we cannot tell you enough how we appreciate your prayers and support!
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Posted by
Posted by
Lynette E 
Apr. 1, 2008 - Untitled Comment
This is your mother.
Don't be smart.
Just take care of my grandbabies - All 3 of them :o)