week month has been something. Noah’s new meds are around the clock and they really take a toll on him. “Mom, say goodbye to the ‘can’t see’ hello to the ‘I’m super wobbly” as he laughs and holds the walls while walking.
I will say, a major, gigantic blessing has been his spirit. The last protocol of meds made him so depressed and angry. He was NEVER light and smiley, always heavy, dark, very mad and sad. Now…he’s a little like a kitten. :-) So playful and “laughy” … smiling for no reason. It’s not a weird, loopy drug induced happy either – just really nice. He was even styling his hair, “I look really handsome today!” Yes you do sweet boy!
Saturday thru Tuesday was ridiculously hard for us because I couldn’t even be on the same side of the house …I had bronchitis and the flu. Fever for 5 days! (People in my house can’t get sick.) Monday he is starting his 5 day intrathecal regiment.
I wrote the above about 2 weeks ago. Much has changed. This new treatment it brutal on him. The happy has gone melancholy. He is so tired of feeling like this – he is so tired of being without his friends. After clinic, Noah deemed ”poke and go” (when he just has to do labs), he begged to go to school. Dennis was elated and dropped him off. Less than thirty minutes later, the hospital called and told us his counts were ridiculously low and that he had to be picked up. He (they) were heartbroken. Noah hasn’t been able to go back since. Back to living one second at a time.
A great story… last weekend my friend Heidi was here. The kids love when she comes! On Saturday, we went to “Aunt Robin’s” house to visit and Noah could have a play date with Dylan, his “wife.” (I didn’t care about counts – he needed to play and they were outside…caution to the wind!) Noah was in rare form… he was so happy and his goal was to “jail the girls!” As Landin and Dylan ran..he needed reinforcements! “Aunt Robin…I need a phone to call Riley!” Riley came in like the calvary on his bike. Now the fun started. Of course, the girls wanted to put their “feet” in the pool, so that meant “entire bodies with their clothes on” while the boys circle the edge. Riley decided “I’m going in” jumps in to continue the girl jailing. Here’s the magical part…Noah, the child that will not step on wet grass without shoes, looks at me and says “Mom, do you have extra clothes for me?” No honey…no one was supposed to be wet. “That’s ok…” he then whips his shoes, shorts and shirt off…stands there in his General Grievous Clone War underwear, with his skinny transparent, bruised from infusions skin… and jumps in the pool!!! I almost burst into tears… HE WAS A KID AGAIN!!!!! I haven’t seen that in well over 3 years!!!! Climbing on rocks, jumping in…the kids swam for about 3 hours and the pool was about 74ish degrees. They laughed, splashed, screamed and laughed some more! It was a miracle!!! Thank you again Lord for giving us these absolute miracles!!! (And me without my camera!!!!!!!!)
Ok, so Sunday we may have paid a little for the joy…but I didn’t care. He was tired and the craziest thing… his hair started falling out in clumps. Twenty steps forward, 1 year back. I should just start referencing the days on the blog, because at times, I feel like a broken record. We have been through this before. It just kills me because it makes him so sad… he really likes having hair. The first day I always thank him “Noah, I have my warm velvet back like when you were a baby!” He always smiles “I know it makes you happy mom” then I snuggle with his head for about an hour. Then we name all the cool bald people and another blessing…for some reason, on his Star Wars/Clone Wars show, Boba Fett boy, his favorite, is bald. (This character has never bald before…I know it’s just for him!) “Mom…why is he bald? That is so cool!!!”
This week, we were prepared for anything… we thought. It is the beginning of the second month…Cycle 2. We figured that it would be like last…maybe some double vision..not so far. Instead of double vision, we have extreme headaches. I am sitting in bed with him as he sleeps. We have been up all night with pain. I felt like I was back at square one – not knowing what to do. So I held wet cloths on his forehead and prayed. He is finally asleep. I will sit and type … and watch him all day. My little sweet angel.
Soon I will have some really important information to announce about Noah’s Light Foundation. I have put it on hold for the last year and a half, but now, the light is being “re-lit!” Anyone that wants to help us, get ready to pull up your bootstraps! it’s big!
Thank you for all of your prayers and support! God is directing our path and we will follow as He is in control. He is our Peace. Praise God in all things.