One Year Ago

It's hard to believe that a year ago, we entered the big, ugly, wicked cancer world. My stomach aches just thinking about it. So much has happened, so much has been learned, so much has changed. Kind of fitting that September was Childhood Cancer Awareness month and that is the month that our world changed. Although we learned of Jake's cancer on Sept 27th, it was October 11th that his Neuroblastoma diagnosis was officially charted. One year ago, today.  At this point in the game, as far as the standard NB treatment "road map" goes, Jake should be about done with the toughest treatments. For those kids who are lucky enough to see first round success, they are celebrating about now. But for those kids who find themselves still fighting, the plan changes and the course continues, it grows longer and harder. At this time we don't really know where the journey will lead, we have plans in place but as you know, they change constantly.  I think we are all feeling a bit run down, exhausted really. Jake's bone marrow biopsy was this week and we have a ton of appointments full of scans and results next week. In fact, we'll be at TCH four days next week and by the end of the week, we'll know exactly how he responded to the MIBG treatment. At this time, we are scheduled for a second MIBG treatment October 28th. Yep, Handsome will spend Halloween isolated in a lead room and I think I'm taking that one harder than he his.  They feel the stubborn spots will remain and he will need more treatment – more treatment – there is still so much "more" treatment ahead. And these aren't maintenance treatments, these are hardcore, keep blasting him with everything they have treatments… MIBG, Bone Marrow Transplant, Antibody Therapy, Radiation. Maybe it's the anniversary date, but I'm heavy hearted and tired. I'm especially tired of the pokes and the procedures, the fear and the tears. I want him to be five. Just five. I want to go back in time and grab him out of this photo for just a day.  I want him to sit in a classroom full of friends, learning sight words, playing at recess, and having mom-n-muffins morning. He's at that question stage. He questions everything. "What does that mean?"  "Why does it work that way?"  "Who made that?"  "Why do we do that?"  "How do you spell that?"  He doesn't even know how to spell!  But he asks. The other day after we finished up his port access, someone in clinic told him "you're so strong and brave, I'm so proud of you, and you're going to beat this", followed with a big high-five.  As we walked down the hall, he asked me, "Mom, how do you know I'm going to beat cancer? How come Roderick couldn't beat his?"  He still asks about him often.  In his little boy mind, Roderick was older and stronger…why will he beat it when Roderick didn't?  These are the moments that I have to look away and try to answer without him seeing my eyes fill up. It's been a healthy month for Jake – as healthy as a cancer patient can be. We are SO THANKFUL for that. He's felt good, eaten well, been able to play outside. We did have to give him some of his own stem cells back to help build him back up from the MIBG and that went well – we were in and out of the hospital in no time. We actually stayed on the BMT floor. We've done that once before and some of the nurses remembered Jake. We continue to be in Clinic a couple of times a week with lots of transfusions, the usual. We've actually spent a lot of time in the 3rd floor infusion room for a change. It's different from the cancer floor's infusion room – not a play room, much more grown up. Like what you would find for adult cancer patients with the recliner and a TV on a moveable arm mount, with a curtain that can be pulled for privacy. He doesn't seem to mind because he gets his own TV to watch whatever he wants, and it's just inches from his nose.  The nurses seem to think he's a hoot. He's different in there, maybe because they don't ever access him so he's usually recovered and happy once we get downstairs. His little friends, Taylor and Nathan were in clinic this week, we also saw his friend Patrick last week, and his little friend Michael.  They are all doing well and that brought smiles and relief. I met a young lady, Jenae, at the store last week who has been battling a brain tumor. She was sitting, waiting for her mom to shop, and I think I startled her when I asked her diagnosis and how she was doing. We talked for a bit and found that her radiation Doc at Methodist will likely be ours too – when Jake finally gets to that phase.  I'm not sure how old she is, teens, but I'd love for y'all to pray for her. She was darling and just delightful to talk with. And, please pray for Nathan's parents (one of Jake's best buddies), as MIBG treatment has now been proposed for him and they must make that decision. It's definitely a hard one. And, lastly, please pray over the tests Jake will undergo this week. For the emotional and physical aspects he'll face. And for Henry and me, that we are prepared for whatever the news.  We expect good things, but we are a year into this and reality has set in. We know that there is still more ahead that Jake will need, we just pray for less, of the "more", and that these treatments have strengthened him to forge forward.  Oh, also… pray safety over our favorite friend, Saraben!  She's on safari in Africa looking for cheetahs for Jake (wink!).  Because of her trip, she hasn't been in clinic this week and Jake has missed her (we both have!) but he's done so well letting everyone know where she is. She's sent him a couple of little messages telling him what she HAS found, and that she is still on the hunt for the cheetah he told her to look for. We love her!!!!  So that's about it for the moment… we continue to praise Him in this storm and are so thankful for all of the kindness, prayers and help you all have showered us with this year!  I can never list, nor thank everyone enough. You have lifted us in prayer, with help, kindness and love. You are God's army of angels here on Earth for us.  We thank God for you every day!  From my devotion this AM…  "I will tell of the kindnesses of the LORD, the deeds for which he is to be praised, according to all the LORD has done for us – yes, the many good things he has done for the house of Israel, according to his compassion and many kindnesses, Isaiah 63:7

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