Just so many good things about today…….. good news – no transfusions at TCH this morning! And ONE POKE! Big sigh of relief… he has seriously been stuck 3-4 times each visit between labs and transfusions. Jake’s platelets are a whopping 23… just a smidgen above the “mark”. And that designated mark is 20… at 20 or less, it’s an automatic transfusion. Although, with Jake, because he’s so active and has been feeling good (meaning he’s bouncing around enough to break bones and skin knees) they will transfuse him a little higher – like 23-24 – just in case. And as you’ve seen we’ve had a few “just in cases”. Nurse Shelly was so good to help us dodge the transfusion bullet. At first they came back with a “yes, he needs a transfusion”. I sank, Jake starting crying, I asked a couple of questions, and Shelly went back on my request (on which I won’t bore you with details), and came back with a grin and a “you’re going home!” I don’t think she knows just how much I appreciate her but she ROCKS! We actually have two ROCKIN’ Shelly Nurses and I love them both to pieces! I always considered them Shelly 14 and Shelly 9 but now they are both on 14, which means more of our favorite ladies! 🙂 SQUIRREL!!! giggles – see, good day! Anyway, Shelly said to keep him in a bubble and that we will do! This really is good news and Thursday will be the indicator if they are really holding. His last transfusion was 11 days ago… this is a record! Since we walked out of those Ft Worth MIBG doors on September 2nd he’s had weekly transfusions… and for a good while it was a couple a week. His platelets MUST be at 20 or higher to make this trial…we’re gonna be there just in time! Jake swears it’s all the oranges he’s eating. He’s on a clementine kick and I’m not kidding you, I think he’s eaten the whole 5 lb bag all by himself. And bananas! Bananas are BACK! His tastes have circled back and bananas are now “delicious” again. In fact, he smells them and says, “yep, it smells gooooood”. He told his Doc that he’s “eating helfy to kill Mr. C”. I thought Doc H was gonna fall over. He seemed to like that answer, and momma does too! I have to say thank you to some very special people… to Ken and Rob with Ground Up, and to Dawna Schmidt and Rachel Parikh for hosting Shop for a Cause, we are so touched by all of the events held on Jake’s behalf this past weekend and to everyone that participated. We are truly grateful and enjoyed every minute of them. I also want to thank Rafael de la Torre who runs with the Snowdrop Foundation and ran the LaPorte Half Marathon on Sunday wearing Jake’s shirt to help spread awareness. We are blessed! Oh last thing I have to share… when Jake was a baby we’d sit in his room and rock and sing, and rock and sing… we’d sing Amazing Grace… his middle name is after all, Grayson, so it stuck. As we left TCH today, we had been laughing and fist bumping, and skipping thru the garage screeching with joy for such an unexpected short day, almost running right thru the glass doors when they didn’t open fast enough. When we got in the truck and pulled out of the parking garage, the brightness from the earlier yuck had burned off and there was this beautiful day. The radio fuzz from being underground found its station and what was playing???? Amazing Grace! And at that moment, this momma lost it! But it was all good… some days there are happy tears. And for a little while the heaviness from my chest lifted… it was good. God winked! “The Lord will yet fill your mouth with laughter and your lips with shouts of joy.” Job 8:21 Here’s our song today… Amazing Grace (my chains are gone) by Chris Tomlin and I love this youtube version because he offers a little lesson about the last part of the lyrics… take a listen… http://www.youtube.com/watch?v=HkAZteruVAw
Trackback from your site.