Mind jumping Monday

My mind has been everywhere and nowhere since yesterday. So much spinning through the brain in the past 24 hours. So much to share, vent about, scream about and praise for. But for now I will talk of a few things. Ramblings.
Sleep was little last night. Grayson sat at that fever cusp again. One armpit said 37.6 C and the other 38.4C. Thiry eight and above is a fever for him. Ummm, I will take the 37.6 please! I was so tired I couldn't even recall if he had been lying on his side to offer up the numeral conflict but whatever. It sat there for a couple hours and he woke with no fever, 37.1. I was nervous for what it may be at clinic when we arrived.
I was more nervous for T. He had no school today. I took all my happy boys with us to clinic today and they were very well-behaved. But I was anxious for the possibility G may have a fever and Triston's plans to attend Aidan's bday party would be cancelled. We intended on getting in and out of clinic and meeting a friend in front of our home for her to take him to the party. I tell you, this family we met through Tball in the Spring (before diagnosis) and then ended up being a student in his class have been life savers many a times. They are more than generous to bring T home from school on days I can't get to him bc of the fast relief I need to offer to the babysitter of the day. And not only has their assistance been amazing but I mostly treasure the friendships that have evolved since. T loves his buddy and thinks his Kindergarten sister is fun, too. The parents are a really cool pair and one day I would love to just hang with them. The mom and I hit it off so quickly. Great people to enter our lives. But as soon as his temp was taken and read 98.4 F I was relieved! It also meant we were most likely okay after the fact G threw a tantrum and bumped his head hours before that cusp fever appeared. We could not help but worry of a concussion or bleeding under the scalp like times past. He happened to be at the brink of tired right after dinner and in protesting fashion he threw his head back at the idea of a nebulizer treatment and slammed it against the wall behind our bed instead of the pillows I am sure he had thought would be there. I am telling you, most of his injuries result from his tantrums and protests! Then we just waited for Dr Kwon to hear my rundown of the weeks events in the world of G and we could go. I pulled up to the house just in time. T had a blast!

But I swear, as I listed off the cusp-like fevers G faced last Tuesday and again last night plus the cold Caden has and the emotional wear the past 7 days have had on us-it felt as if a whole month had passed since last Monday's visit. So much has either reached the surface of my brain or emotionally sunk me. Kinda don't know what direction to turn in but at least knowing so much of it is good gives me some steering control.
Grayson received a dose of Vincristine today and a blood count. Counts were great in comparison to last week. Great enough to prove his neutrophils really are trying to fight off some bug and doing a good job so far.
ANC spiked to 840, last week 250
Hgb holding tight at 9.9
Platelets 448
Those numbers make me happy!

I asked those questions. We now have a map of Maintenance. We begin it on March 7th and it will last for the next 2.5 years. The final stage! Maintenance is given in 12 week cycles. Here is the rundown that takes us through May for now. 84 days from March 7.
Every four weeks he will receive a spinal tap and injection of Methotrexate.
Every four weeks he will get a push of Vincristine.
He will take an oral dose of Mercaptopurine (MP) everyday
He will also now take oral doses of Methotrexate several Mondays in a row.
Every 4 weeks for 5 days straight he will take oral doses of Prednisone (steroid)
And will continue his Bactrim, Nystatin and asthma meds
It will also be very important to monitor and encourage his diet. This is the time for him to pack on those healthy pounds and gain some inches!

The dose and frequency of the above depends upon his height and weight. In the beginning we will go in every 2 weeks (most likely March) and then by April visit once a month. The need for blood transfusions, colds/viruses/bugs/asthma peaks may increase those visits as well. But that is the general protocol. ANC will drive alot of this. Low counts determine alot. But it is nice to know there is a new type of schedule we will learn to adjust to. I welcome this new schedule. A schedule that maps out the next two + years. Bittersweet feeling.

I did ask what can we expect from this phase. They shared that because he has done so well there shouldn't be any MAJOR bumps in the road, but to never rule them out. The way he has paved his journey thus far gives quite a glimmer to how manageable Maintenance can be. Those are hopeful words. Princess Jennie has seen many kids grow their hair back in this phase. Boost up their energy a great deal (but if you ask me that hasn'tbeen too much of an issue for G!). But as always, when he gets sick and his counts are low he will def feel it. It will hit him. Overall, it just sounded promising. The worst case scenario fears have to remain to be realistic (see my previous post to know how those will never go away in both my mind and medically) but it is still a positive vibe I got from her. These words of hers made me cry and resulted in my mumblings of thank yous and love yous to everyone in the room-"you will get pieces of your G back". Go ahead and pause, you can cry bc I sure did. The moment was truly memorable. We are leaving behind so many stages of raw shredding n tearing into our lives and moving onto getting my G back, to the best of his abilities. Go ahead and cry, reader! Hugs were all around. I let them know I could not have done any of this without them. Knowing each Monday I would see my team of strength and dependency past those spaceship doors was more than I could have asked for on this journey. Today was one of those days! And his behavior matched all that discussed in that room today. He was cooperative, happy and absolutely lit up when he saw Aerum's face. It was priceless. This is how I remember Presidents Day 2011.