What a day today has been! I think the entire KU basketball game could have been deemed ineligible for the remainder of the season and my grin wasn't going anywhere! As you've probably seen by now, we got some REALLY good news! The ONLY good test result news we've had since... well... JULY!!!! Every other test our cutie pie has been involved in, whether for Autism, or this Asthma/CF ordeal, has been not great news. Each test made it harder and harder to keep believing....and every arrow was pointing in the same WRONG direction! Until today... the most important arrow of all arrows yet... pointed the RIGHT way! Only ONE mutation.... a CARRIER of the disease, but more than likely nothing more!
So it wasn't just amazing timing that we got the news today. That came at the hands of an oh-so-polite-but-pesky-mother! As I was falling asleep last night, I decided St. Francis would be getting a call from me in the morning to see if they would give me any type of timeline on the genetic sequencing. Children's Mercy (CM) told me, Mayo would let St. Francis (SF) know, because that is where the test was run, then they would let Children's Mercy know. That was relying on too many different hands to make sure the info got where it was headed, so I thought maybe I could speed things along. So I called SF, and the nice lab worker said, "Oh sweetheart, that's been done....and faxed to Children's Mercy." I thought surely they were confused and just saw the FIRST test results in his file, so I re-explained.... and again she said... "I am looking at the results for both tests right now, it is completed. I will re-fax it right now."
I hung up the phone ELATED! Yes, you read that right. Elated, not ready to puke with nerves like yesterday. When I was brushing my teeth this morning, something told me everything was OK! In my heart, for the first time since this all started, I truly let myself believe that our son was going to be just fine. Yes, I always clung to the hope, and stayed positive--but in my heart and mind, the chances that it ended poorly were at least equal to the chance that it would end happily.....until today. I had an overwhelming belief that it was going to be HAPPY NEWS headed our way. It was as if God was waiting for me to truly BELIEVE that he could and would spare this road for my son before unveiling his plan! Why do we sell him short?
There was a bit of a cat and mouse chase, off and on all morning (CM denying having the results, SF insisting it had been faxed and re-faxed, verifying correct numbers, etc). Then finally I got to talk to the "head" gal at the SF lab. She said, I'm not sure that CM knows how to read this particular lab.. and I think I know why they think it's the results from the first!!! (my over-analyzing worked to my advantage for a change.... I KNEW then, she was basically saying, the same mutation was found, no additional, so CM THINKS they are seeing the original testing, when in reality, it's the second!) She was so wonderful, said, I'd waited long enough, she would personally call and explain it to CM, and ONE of them would call me in 10 minutes!!!
About 5 minutes later, we got the happy news!! CM called and said they did not find another mutation! They again found the first (R352Q) and that was it!! For the first time, she said we are getting close to ruling it out! Yay!! She showed her hand!!! I rounded the corner to a pale looking husband--- guess we traded places today---and he could tell without me saying a word that he was seeing happy tears!!! And we hugged, and we laughed, and we danced a little.... and contemplated driving to his school to give him a BIG OL' HUG.... but figured we could hold off an hour. The girls wanted to know why we were being so silly, and we told them that we got really happy news about Kenton....and they didn't ask anything else, just joined the celebration! We poured some Super Fruit Global Blend and Kambree snapped a pic of our toast!
So we are very close... his lung tests came back with a few mild concerns, but nothing that couldn't be found in severe asthma patients...or other respiratory conditions, so standing alone with no mutation, wouldn't necessarily lead to CF. So it's just the pancreas results we are waiting for, and she said yesterday about a week for that.
So you may be wondering, if it takes TWO mutations to have CF...and Mayo said he only has one, then why is it even still a possibility. CF is one of the most researched diseases, and they are still learning of new mutations... the number just keeps growing. So, given the rest of his symptoms and scores on other tests... a fuzzy lung test and poor pancreatic test could still leave us treating it as if it's CF... and assuming another mutation may be present that is not currently researched or known.
In my heart of hearts... I think we are ok. Will still be praying with all my might, and asking you all to join me, but I think we are getting somewhere.
You know what else I think? I think we watched two miracles before our eyes....a direct result to prayer. I'm still in utter shock at how many of YOU were lifting him and us up. Social media can be a pretty beautiful thing, ya know?
Miracle 1:
First, if you are eating, now would be a good time to stop! We're going to talk about the deuces! ;) Kenton has had digestion issues since birth.... very FREQUENT, very YELLOW, and very LOOSE. TMI, perhaps... but I want you to know the specifics, so you'll see why I believe some true healing has/is taking place. It wasn't until the Autism came in to play (the research discusses the connection with Autism and digestive issues) that I stopped to consider that this isn't normal, and perhaps even concerning. Maybe I should be embarrassed to admit my carelessness, but I really just thought it was his poop. Back to the miracle.....the last 3-4 days before we went to CM, his poop changed. I wouldn't put it in the normal category in regards to color... but not yellow, and very close to brown... the consistency (am I really typing this?) and the frequency, had completely improved! I'd stare at the toilet in shock.... really not believing my eyes! Coincidence? I don't think so!
Miracle 2:
I mentioned yesterday that his lung function had improved (different than the x-rays referenced above---now we are talking about lung strength, air movement, etc.)... but probably could have elaborated! He went from FAILING to NORMAL! She read his scores in 3 categories, and although these are not exact, one of the categories jumped about 30 points!! The other two from 70's to 90's. This is huge really. The doctor used the term "remarkable improvement" if I recall! I told her yesterday between the poop and lungs, I felt like I was watching a miracle unfold before my eyes... she smiled politely and nodded. No clue where her faith is, but I know where mine is! Yes, Kenton was on a new asthma action plan, with new VERY costly prescriptions, BUT I'm pretty sure the GREAT PHYSICIAN had a little something to do with it!
So that is where we are at.... enjoying life in the cautiously optimistic world! If the pancreas results are good, we go back to CM in March to continue monitoring his progress with the lung issues!
Before I cut this off, I have to say one other huge celebration from today. Since the middle of December, my beloved grandmother has been dealing with major health issues and in and out of the hospital. Days before it hit, she was still driving, working, babysitting, and living the most FULL life of anyone I've ever known in their 80's. Then she got zapped... it's been soooo very hard on my mother, and all of us to see her like this! About a week ago, she moved from the hospital to a brand new assisted living facility in Derby for physical therapy, rehabilitation, etc. Today, we visited her, and she looked AMAZING! For the first time in over a month, she sounded like herself and looked so improved! I really couldn't get over her improvement in just the few days since I'd seen her! Please pray for her... a full recovery!
Thanks as always for taking part in The Whole White World!
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