Big news today! We have started maintenance! Which is where we will call home until our leukemia journey is over. Wow... you know I cannot even imagine it being "over" I cannot wait for the day but it seems so unreal!
Today we went to clinic and they took Tristan's blood. They tested it and said his ANC was 1,300 which is our magic number that needs to be over 700 I think to start the round. Could be 900. Either way, 500 means no going in public. So that was good.
His hemoglobin was only 7 though and under 7.5 they transfuse. So we waited to hear if they were going to transfuse or not. They took more blood to test and type incase he needed a transfusion.
Turns out, upon testing it he was producing "baby blood" (what nurse Rose called it) so they did not transfuse expecting by tomorrow his hemoglobin to be way up fine.
So all that commotion and we went on to his spinal tap. They started cleaning him up and were ready to start and I realized - um... no one put any numbing cream on his back! He had his loopy meds but... still. We decided to just go for it since that only numbs the skin and in one second they would be past that part... Poor baby! But he did fine. Yes he cried but I think it was because Rose was holding him more then pain. He is one TOUGH cookie! They did not drug him up really good this time because his hemoglobin was so low. So he was on a smaller dose then normal. It was not the best situation but Dr. Terri did a QUICK and awesome job and was done in no time flat
But Tristan was not as out of it as he should. He was actually COUNTING to 10 with us when we said 10 more seconds and you can get out from under Rose. (putting Methotrexate in his spine) Then they saw it took too long so we had to count again! lol Poor Tristan.
He had a melt down and wanted to sit up right away. I know it upset the dr and nurse but I ended up letting him. When he is not drugged up he does NOT want to stay laying flat. It is worse on him then a headache from the spinal would be.
So he did get up to eat and drink and calm down a little. It was just a bad day for him. He has caught our family cold and was up all night coughing so he was just moody.
When we went to leave the clinic he started to cry. WHY? No one knows. But anyways, he cried from clinic to Falk Pharmacy until about 20 mins later. He takes tantrums like this at home. How I deal with him is I put him in my room, shut the door and tell him I do not want to see him until he is finished with his cry and tantrum. We found spanking and corner only make him rage more. So we do not do that when he tantrums. But being in the middle of the hospital there is no where I could take him to calm down yk? So we were stuck. When we are not away from him he takes LONGER to get it all out. Sigh.
He did calm down and feel asleep in the car. Then we stopped for lunch and he cried again being woke up. But he then fell asleep on my legs in the booth.
So Maintenance... what does this mean? Well we are now down to monthly clinic visits for the remainder of the years. We will get Vincristine at clinic and every three months we have a spinal. He will have a daily chemo pill and every Tuesday we are Not at clinic he will have 6 extra chemo pills.
Pretty much the same deal we had before (between our intense treatments) but skipping the 6 pills on clinic day changed. Tristan handled it well last time and we expect him to again. Oh he will also have 5 days of steroids every month. Fun.
Here is Tristan starting to get some loopy meds for his spinal... too bad the sun came in the shades on his head like that,
And here he is with his car using his Port tail as a gas hose to fill it up!
That picis so cute!! Just wanted to pop in to say hi, and that I'm so happy for you that he is on maintenance! I think we are going to be finishing up with school around the last of May, we've had a great first year homeschooling-even with moving twice lol! Have a blessed day, Mary
www.homesteadblogger.com/marys4littlelambs
I am so glad you reached maintenance. I love the photos. We do all our spinals under General Anaesthetic.
Keep well and I am praying really hard that you will have a very easy ride from here on with very little happening and that soon you can settle back into some sort of "normal" routine.
Lea White
Wellington, New Zealand
http://whitesinnz.blogspot.com
http://bravefighters.blogspot.com
Congrats. on your expanding family!
I have stopped by a few times the last couple months to read updates on how things were going for your family but haven't been on long enough to leave comments.
I must say you do really amazing job of keeping your blog updated with all that you are going through.
A place for me to gather thoughts, keep memories and gain sanity as I embark on the homeschooling journey. Also a place to update my friends and family on my son's journey with fighting a.l.l. Leukemia.
He had his loopy meds but... still. We decided to just go for it since that only numbs the skin and in one second they would be past that part... Poor baby! But he did fine. Yes he cried but I think it was because Rose was holding him more then pain. He is one TOUGH cookie! They did not drug him up really good this time because his hemoglobin was so low. So he was on a smaller dose then normal. It was not the best situation but Dr. Terri did a QUICK and awesome job and was done in no time flat 
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