Mohawk?

So I was ready to type up another title for tonight's update. I was enjoying a catch-up conversation with my sweet friend Heather and barely got started when Bryan ran in to give me the news. "Brayden's ready to cut his hair!" I quickly had to hang up with Heather and ran to the bathroom. SCORE! So Brayden starts with the clippers and then asks me to jump in. I used to cut his hair until he was about 3. He would scream every time he'd have to get it cut but when I would do it, he was fine. Talk about stressful! It took me forever to do it, and the mess afterward wasn't worth it! I found out after a trip with dad to get his haircut, maybe we weren't taking him to the right places. Exit the sweet man at the corner barbershop; enter the cutie pie girl in the salon. Now he LOVES to go; hmmm. So Brayden asking me to jump in tonight brought up a lot of memories of the old days of having to cut his hair. Brayden and I switched back and forth with the trimmers and this is the before and after pics...and some in between. YEAH!!
QUOTE OF THE DAY: After looking at the results in the mirror, "Yeah, baby! There's a new king in town now!" HUH?!?! Who has he heard saying that while looking in the mirror? It's not me or Hershey...process of elimination....


PS, Heather. Sweet Colton's prayers and words just melted me. There's nothing like the heart of a child.
Today we had a yummy hot Malt-O-Meal breakfast with blueberries and milk. YUMM! I hear they have some AWESOME products other than just hot cereal and incredible values on ready to eat cereal. Our fav is the Blueberry Muffin Tops! Gotta check those out even with a Walmart coupon online! I'm just sayin'....A girl's got to have her shout-outs, after all, right?
I'm up late cooking turkey burgers on the foreman grill. (Hint: so the white patty doesn't scare the boys, I've been cooking them for a while now with Worcestershire sauce to darken them up a little and gives them a great flavor!) This buying in bulk thing has its disadvantages...we've gotta watch dates and with us traveling, I forget to account for those days! I've learned my lesson after cooking 3 meals tonight; all while feeling horrible. I've been fighting some nasty headaches since yesterday that won't quit. Anyway, before running to bed, I know I'm getting a lot of questions on how yesterday went. I wanted to give a quick update.
First, please pray for Sam. He's an 8-yr-old boy whose mom and dad also work in the vendor community here locally and we have some mutual friends. We heard this morning they went in for headaches to his Dr. and after an MRI, they had to also go to Arkansas Children's Hospital last night and had surgery this morning for a tumor in his brain. That's all the info I have at this point. Last we heard he was still in surgery. Please pray for this family who is going through their own nightmare and hearing this today hits so close to home for us. It's awful going through it but watching others is even more horrible in some aspects because you can't imagine their hurting and pain and remember how awful this disease is whatever the kind, cancer is ugly and I hate that it hurts our sweet boys. I'll post more, with their permission, but please remember Sam and his family in your prayers as well.
The days are really flying by in some ways and dragging in others. We can't believe we're on day 23 of this journey. We're really missing friends and family like crazy! Thanks for the cards and visits through the door (Hannah & Aaron!) and phone calls. Faith, your post card and letter was awesome! Brayden really liked it! Brayden's still doing so well in spirit and his attitude is great. Bryan and I are excited for him to be off the steroids. It really has a lot of emotional side effects that have us missing the old him sometimes. But we know it's helping him and we're praying it does the job it's supposed to regardless of the side effects that are so minor compared to what he could be going through. He's still loving his morning call-in and class discussions via phone. We have an American Flag outside our house and it's hilarious each morning from the office with the blinds open, he's saluting and pledging right along with them while looking at the flag through the window. Tomrorow he gets to do his biography on Abraham Lincoln. I'm so proud of him working on it even while in clinic to get it done. He's working really hard to stay caught up.
We kind of were deflated after yesterday's visit back to ACH hem/onc clinic for his weekly chemo treatment. 2 weeks ago when we were told he was in RER (rapid early response) we knew it was amazing and rare and such good news. The Dr. did too. He met with us yesterday to tell us there was a mistake in the counts that were done on that bone marrow test and they were inaccurate. Brayden's not in RER and his bone marrow counts were still high. Our hearts just sank. What we know now is that after yesterday's results, the Dr. came back to tell us his blood showed no leukemia blasts! That's good news; in one week they decreased from 14% to 0%. His spinal fluid test was accurate and was still clear from two weeks ago and that's still good news. We learned that the more he endures the chemo treatments, the more likelihood for side effects. We've started to see a few and just praying through those. It was a very long day yesterday for us and a late night getting home. But even while in clinic, we saw reasons to again be thankful. There was some sad situations around us and seeing our sweet boy as he is now is hard to imagine him struggling like some of those sweet children. We got to at least sing Happy Birthday to Ally via speaker phone and get the play-by-play of the present-opening from Aunt Stephanie. It was bittersweet. I just treasured the pic mom sent me of Ally diving into her lipgloss. I was thankful for shopping early a few months back for her. Her sweet 'hello' and 'miss you' to Brayden nearly broke me. I had almost forgotten her reaction when Steph told her Bray-Bray was sick. "Did he swallow a puzzle piece?" Her response was so precious.
What's next? The big day. We can't say enough how much we're praying for a miracle for May 20th. This will determine Brayden's next steps and has been the day all along we hoped to hear "Early Remission". One route is we move into Phase 2 (Post-Induction) as planned. Another route, if the bone marrow isn't low enough on his blast counts, then he'll have to endure some more aggressive treatments. After his Dr. re-evaluated his results yesterday before we arrived, he began preparing us for another possibility. Brayden might have to stay in Phase 1 longer. This would mean adding another drug to his regimen that's been in clinical trials for his T-cell type of leukemia and the relapse rate shows low. His Dr.'s main concern is if we don't treat it aggressively enough now, it's more likely to relapse and with T-cell, the likelihood of successful treatment on relapse diminishes greatly. The new medicine would increase his toxicity and has 40 pages worth of side effects and concerns and documentation. His Dr. told Bryan not to let me read it and our prayer is next week, we can give it right back to him without having to sign. That would mean Brayden can move into Phase 2 as planned. If he doesn't, we won't know what that looks like until next Thursday. They're going to do some special counts with 1 of 2 people in the US that do this at UAMS and we won't know those results until Thursday. What this Dr. will do is evaluate Brayden's MRD value where they count all his cells and determine his minimal residual disease. We want this number to be super low; less than one tenth of one percent. If it's high, then he's at high risk for relapse, thus the other course of more aggressive treatment. If his early bone marrow results show high from his Dr. at the time of the procedure, he'll be admitted when we go in on Wednesday. We're already planning to spend the night and praying Brayden can leave with us to go to the hotel. Regardless of the results, it will be a long day for Brayden with another spinal, bone marrow biopsy, and they'll do a chest x-ray to check on the size of the death star. If it's shrunk enough, they'll schedule surgery for him to have his picc-line removed and have a port placed.
It's so tough not being able to plan what to expect. One of the questions we asked his Dr. was about Brayden's energy levels and it just seems he's doing so well to us! He commended how strong our sweet boy is but cautioned us that will change in Phase 2. So it reminded us to be thankful for the energy and all the good we have now. We asked about visitors and he told us he has to stay in Isolation. The Dr. I think has learned my personality quickly and deterred me from doing research after my reaction this weekend. (Who told him!?!?! Just kidding). He reassured me to stay focused on each block of treatment at a time and not to look past that. He told us he'll be all the research we need and all the information we need, he will provide to us. It's hard to hear on the one hand because, again, of my controlling nature. But on the other hand it was almost a relief. We just have to again stay focused on the here and now and be thankful for what today brings. If we keep looking to tomorrow, we couldn't make it through.
We're thankful for the healed paper cut! It's the small miracles, right! Wednesday morning he wakes up and I was never so happy to see a scab! One less thing on my list, right? Thankful he can have SOME food before our long trip to Little Rock which would NOT have been fun with the Steroid Clones beating his stomach up from the inside! Those boogers are mean when they aren't fed!
I don't know how soon I'll be able to update everyone next week, especially since we won't know the full plan until Thursday. We so appreciate the continued prayers. We all can feel them and are so thankful for God's help in reminding us He's hear for us to help shoulder the burden for us and that we aren't meant to carry it all the time. The headaches are evidence I'm still learning that lesson!!!!!
Please feel free to let us know if you have any questions we aren't answering. I'm trying to learn brevity (Mike) but it's something I'm just not naturally good at. I hope we're providing helpful information to keep all those that love and support us informed of how our Sweet Boy is doing. If there are other things you want to know or want to ask him, please feel free! Love to you all....