Once he was able to sit up and move after a 30 minute lie-down following the spinal we headed to the Day Room. I brought my laptop and Ipad to keep us occupied with games, emails, pictures and report cards. We had the place to ourselves. He had every toy at his disposal and everyone's attention. At one point I had to run downstairs to the pharmacy again bc his new chemo drug ( Thioguanine) is not available in most pharmacies. But the hospital carries it. I needed other refills as well, so Regina sent those downstairs, too. I stepped away and left G with Princess Jennie and Megan.
Another push the envelope moment while I was there-The clerk inputed my insurance info and G's bday was not getting approved. I assured her we had been at this for 6 mos and we have not had difficulties before. I glanced at the price on the bag while she contacted the insurance co and all I saw was $253.86. FOR 10 PILLS!!!! I told her she BETTER get a hold of them bc I have NEVER paid more than $25 for any of his prescriptions. Low and behold we find out she was typing in the wrong digits!!! Whew! W that nerve fest out of the way, I headed back to G. I coudn't help but think about families who have little to no insurance. What do they do?! A yucky reminder of why I have to work!
Upon my return there was G playing dr with Jennie n Megan. Too cute. Shortly after Dell walked in, "I heard Grayson was giving out flu shots. My turn G!". Dell sat with G for a bit and played doctor. He shared some more heart-warming stories with me. More good times I have to look forward to. More incredible feats his doctors will accomplish with him. I just know it.
As it approached 3 pm G still had not peed. He had been hooked up to fluids since morning and nothing. This was the exact reason I didnt give in to the naps we were both craving. I loved that we had the Day room to ourselves for him to move about with his IV pole and play to his heart's content. I had hoped the movement would get him peeing. A little after 3 he had a poop. Nice but not what we were looking for! Another push the envelope moment! By 3:45 it was time for Lasix. It makes him pee and FAST. Within 20 minutes we had 4 pee diapers all meeting his full day parameters. All day pee within 20 min! Goofy! We did our job and could now go home.
As I gathered our things, G followed Jennie to the treasure chest. Megan and I chatted about recent events in our family and how the kids are doing. It is chats like those that make me feel at home there. After a bit I realized G hadn't returned yet. He was probably shmoozing all he could get out of Jennie. I made my way down the hall and there he was. She commented on how particular he was being, how he clearly knows what he does and does not want. I replied that has always been his way. Precise and meticulous. Once he finally made his choice (a telephone) I got him dressed. He was so slow about it. Putting on a show for them. Dramatic emotional expressions, trying to get laughs out of them. He was truly trying to entertain them. I wish I had my camera right then and there. His next move will never leave my memory. He started to approach me to leave and stalled. I asked what he wanted and he told me hugs. I told him to go right ahead. So there was Jennie and Megan standing behind him as he ran to them and delivered hugs. They declared it the best part of their day. But as he walked back toward me he paused again ( and to be honest at this point I was really wondering if we were ever gonna get out of there!! ). He glanced over his shoulder (note-all the while he is delivering happiness he is also playing shy guy with head down and fake pout faces in between deliveries. Again, quite the two yr old production of Faces of Eve!) and looked into exam room 3. There was Dell on the computer observing and commenting the past few minutes of exchanges. I nodded at G. He walked into the room and held his arms up for Dell. They embraced for THE most adorable grandpa-like hug, G's head on his shoulder and everything. It lasted what seemed like forever. A moment that truly felt like it froze in time. You recognize those kind of moments more often when you receive life-altering news mos prior. You don't find them, those type of moments. They find you. I peered at Jennie and Megan and they were teary-eyed. I was, too. It was THE BEST way to end a long day!
I was so proud of my boy as we headed home. I thought about how much he has had to endure. And yet, he can still pass out hugs like candy to those that HAVE TO deliver such pain at times. These people are such an integral part of his life. Our lives. The way he has welcomed them into his world continues to amaze me. I'd like to think that even though so much of his world has been all about cancer these past 6 mos-I have instilled some qualities in him that keep him trucking along and spreading his love along the way. He has obviously touched them in more ways than one. And all I have been doing to express my gratitude is pay it forward. Things like bringing them cookies, baby presents for Jennie who will pop in 7 weeks, and hugs.
I have to say-to think of why we were where we were Monday (get that mouthful?) and how we made it through-we are so lucky. I still believe that. We were gone from 8 am to 6 pm but we had a great chemo day together. A great day with great people and my GREAT G!
The week(s) ahead-
we started the Thioguanine (Tg) Monday night. He also came home with his needle in (port in access mode) for me to deliver AraC thru syringes n port this week and next (M-Th). So we play the no milk an hour before and after Tg and possible nausea from AraC games. Zofran will be our bff the next few weeks. I donned my chemo gloves and gave him his meds right before bedtime last night (by flashight source bc we had no power til past midnite). We are going to follow that routine to limit nausea and enforce early bed for him to power up his energy levels. We have begun to see a pattern (dare I say it!) in possible dips in platelets on Thursdays and/or Fridays so any and all rest he gets is important. He is completely aware his "tubey" is in and gets irritated when it is not tucked into his pants (the IV tube that hangs from the needle attached to his port). In fact, I had to apply more tape below the Tegaderm so the tubey stayed put higher up on his chest. I and he don't mind it dangling below his belly button but more tape assures the needle won't budge. He YELLS to me "fix my tubey!". I am grateful he has learned all these terms to indicate his needs. He even bumped his chest on a toy earlier today and told me his "Port hurt, it hurts mommy. I bump!". I took a look at it and there was no red or irritation or swelling. But he was good to tell me. So, of course we are keeping an EVEN more watchful eye on him and his circus-like actions while his port is in access. I will de-access him Thursday nights and the nurses will put another needle in Mondays. So far so good with this phase. Oh, and I desribed the tip-toe walking to Dell and he stated that if it was that temporary (24 hours) it was possibly a pulled/strained muscle or chemo doing it's bad stuff on his body. If it occurs again for a longer period of time I will have them look into it.
We made it thru the ups and downs of steroid withdrawals and body aches and pains last week and are beginning this week 26 pretty well. A snow day like today perks things up, too! We will continue to plug along and I will keep you all posted bc it has been my best form of therapy. Thanks for reading! Hugs your way! Now naptime before snow play!
