It’s been a strange visit! We’ve had an x-ray of the foot for a possible break (four year olds running in socks are really dangerous), an x-ray of the chest (the reminents of his RSV cough began to get worse while inpatient), and four of us staying in one room because the girls decided to stay the whole weekend with Jake. This was actually good for him but not so sure how good it was for me. Just sayin’! Actually, it wasn’t too bad but there were definitely moments where I’m sure the neighbors on both sides were wondering what was going on in here. They can get a little noisy! Althought the floor was jumping a bit this weekend with lots of families as many of them came up to watch the games together… a good weekend for both of our teams… Go Texans and WHOOP! Way to go Ags! The girls ended up in Jake’s bed and he ended up in mine. We made it all work and the girls know the hospital backward, forward, up and down. They found 3 gift shops, the food court, the Women’s Pavilion Cafeteria, and the 16th floor vending machines. You’d think they were on vacation! We had a couple of visitors – Adriene and her daddy, Dan Bodin, who I am thankful for a wonderful, home cooked, meal. And Michelle came up bearing gifts. Her company did a sock and slippers drive so she brought a BIG box of them for all of the kids on the floor. We had the priveledge of going room to room to let the kids pick

some fuzzy, soft, warm socks or slippers. It’s hard to understand what something so small can do for these kids until you see how much it makes them smile. As for now, Jake’s 72 hours of chemo just finished up, he’s getting a blood transfusion to juice him up till we are back Thursday (since his hemoglobin is a wooping 6.2), we will be going home accessed, and he’s flushing so we can be ready to hit the road jack! We are ready to get back home. We’ll be back several times while his counts recover to check in and for transfusions. And his big MIBG will be scheduled in about two weeks to see how the chemotherapy has been working. We’ll be praying for really good scans, for a screen with very little markings, and for the Docs to say they are ready for us to meet with Dr. V (our surgeon) to remove the mass that started it all. At the moment, Daddy has turned Jake on to Green Lantern as “the greatest Super Hero”. I think it’s funny to hear the nurses ask him about his favorite and have him say “Green Lanter, cuz my Daddy says it is”. But for him it’s still all about the dinos! He was actaully stumped by one that Adriene brought and they had to find it in one of his books. I think it’s one of the first that he didn’t know right off the bat. You better believe he knows it now! The kids go back to school tomorrow and Jake and I will rest for the next couple of days. You know hospitals and the night time noises and busyness… as Jake yells to the nurses… “beep, beeeep, beeeeep, beeeeeeeep!” (Luckily, he’s so stinkin’ cute because when he wants to, he can sound just like one of those migraine making machines.)

Here we are again… TCH for chemo… Round 4. Jake’s been off a bit this stay.

Last night was a long one as Jake spiked fever all night but as the sun came up, so did a new day, new hope and NO fever. My scripture reading today said… “Search me, O God, and know my heart; test me and know my anxious thoughts. See if there is any offensive way in me, and lead me in the way everlasting.” Psalm 139:23-24 Anxious thoughts? Who me? After a night of little sleep and much worry, He gave me just what I needed to be reminded that He brings us “hope” and he can change our hearts and all that is negative and worrisome within us with just a turn of the corner, a prayer, or a new day. Thank God for new days! Now, if Jake will just stay fever free so we can stay on target with his chemo and discharge date. They’ve temporarily stopped his chemo for a few hours to give antibiotics. Can’t run them both in the same lines through his port so it’s one or the other. Just in case, he’s hedging toward and infection, the antibiotics win out. They are running cultures to see what spiked it but any number of things, from the chemo itself to a UTI can do this. Especially since one of the chemo drugs he’s on is not kind to the bladder. This stay has been bumpy from the start… not sure if it was the nice long stay we had at home that had us not ready to return or the fact that he has been poked and accessed so much in the past month that he’s just had it. His port access during admission took 4 nurses, me and Daddy. In the end, they wrapped him in blankets to “taco” him so he couldn’t hurt himself or any of us. It was HORRIBLE and traumatic and everybody on the floor heard it or heard about it. After they unwrapped him, he came out swinging, caught me in the cheek, then he crumbled and cried for almost an hour, only to sleep it off for about two hours.

The fact that they know to do these things says that this is not unusual. These kids hit their breaking points just like we would but their age and inability to communicate makes it so much harder for them. Our Child Life Specialist, Saraben, is absolutely wonderful with Jake and he is so comfortable with her. She is so very good at what she does, is on the mark everytime, and so gentle and calm with him. She spent a good amount of time with him after he woke up and then with me to talk and reassure me that this is normal for this stage of the game and it will probably get worse before it gets better, especially as we come up on his Stem Cell Transplant. She did say that he will have a PIC line put in for transplant, in addition to his chest port, so for a good month and a half of that time, no pokes – thank goodness! He did get to put his own meds into his line yesterday and that was a highlight and an opportunity to give a little control back to him. Thankfully, Kate and Emma are here for the weekend to keep him company. Saraben also gave the girls window markers and they’ve had the best time drawing all over the windows and Jake’s door. Even Jake made a big smiley face on the window. When we leave this room, the cleaning crew is going to love us! AND… there is recording studio here where patients and siblings can record music so the girls got a taste of what it’s like to go into a music studio and had a blast recording a song for Jake. He even has a little cameo at the end. They’ve played it over and over, and are looking forward to recording more songs. TCH has their own TV/music station called Radio Lollipop, where patients can request their favorite music or ask to have their own song played on the station… wonderful little perks of how much TCH loves their kiddos. (I will try to get a link up to showcase our rising stars!) Our kids go back to school next week and I’m NOT ready. In fact, Jake and I won’t be home yet so Daddy gets to help them start the new year, back-to-school, routine. It was nice to have some time with all of us home together as it seems like the past few months are a blur and we really needed some time together to just hang out and do nothing…. praises for that! As for now, Jake, Kate and Emma are all sleeping, I have my coffee and my devotion, it’s quiet and dark, and there is silence and peace. I’ll update sooner this time but for now, please pray with us that Jake’s fever is gone and that the next couple of days are better for him, and praise God for this new day. Hoping you find rest today and big things to praise and smile about. As Emma reminded me, it takes 43 muscles to frown and only 17 to SMILE! =D

As we go through this journey friends shine and do amazing things for my family.  Chisum Whorton is one of these people. Chisum is a past employee at TWFG and shows up every once in a while at work. He showed up shortly after we received Jacob’s diagnosis, listened to my shock and shared some great advice. He then proceeded to do extremely amazing things for my family. I can’t thank you enough Chisum. Jean Bronaugh is another amazong person who has become a beacon of hope for us. Her huge heart, caring nature and love that she continually gives my family and me is truly inspiring, thanks Jean. A little while ago I got this wild hair to play soccer again and met a guy named Rick Gonzalez.  This is another truly amazing person.  His continued selfless acts are admirable. He recently held a raffle for an iPad, the video is below. We didn’t even know… Thanks Rick. [youtube=http://www.youtube.com/watch?v=w1PqA4VoDXU&w=450&h=300] Happy New Year and here’s to a kick butt 2013! Thanks! -henry