Rather than heading in for chemo on Thursday, we were able to load up and head for the beach.  It was perfect and we felt like we needed to pull the family close and disappear.  This next stage of treatment is going to be so intense and Jake and I will spend the next couple of months away so much of that time that we figured this would be our only opportunity to spend some time together with all of us in one place.  The weather was a bit chilly but the kids were able to body surf, and shell hunt, ride scooters and skateboards, and just be on the beach and play. Jake found a BIG bazooka water gun that was as big as him and he carried that around for a good part of a day.  He didn’t get in the water like the big kids but he rode his scooter, and giggled at Gunner chasing every bird that would tease him, and took a lot of walks with me. And we were ON the beach… the sound of the waves and the beach fun was just what we needed.  The dog was quite the entertainment for all of us as he was in doggie heaven and can hardly move today, he’s so worn out.  For those of you who know him, that’s saying A LOT.  He’s a year old German Shorthair Pointer and his energy is endless… until now.  We found that he is as much of a beach lover as us.  He’d run in and out of the water and swim into the waves to surf with the kids.  The “long weekend” did us good and now we can face the next few months a little lighter.  I think the past few weeks had us all dragging. We’re now scheduled for chemo this Thursday and Jake’s birthday is May 2nd so we should get out a couple of days before his special day to be home just in time to celebrate.  We just need prayers that we STAY HOME!  I’ve mentioned this before, this is the combination of drugs that send us back for a good long stay with neutrapenic fever and once we are admitted we can’t go home until his counts rise, which tends to drag.  This time we’ve been cautioned that because of the c-diff he picked up with his surgery a couple of weeks ago, it is highly likely that   it could recur, which would lengthen his stay. They will give him antibiotics with this round to combat the mouth sores and that could be the golden ticket to bring it back.  IF it doesn’t, and he ends up back in the hospital for the fever, they have no choice to give him really strong antibiotics and that will most certainly bring it on.  The antibiotics change the flora in his gut which invites the c-diff for a return visit.  BIG sigh!  Sweet boy just may not be able to outrun it.  If by some miracle he doesn’t get it this time, they said it’s certain to recur during stem cell transplant.  They (BMT) called today, by the way, and I will meet with them Friday while we are inpatient.  It’s time to begin getting everything in order.  She mentioned another hearing test, a lot of blood work, liver test (or kideney ??) and an echogram.  We hope to get most of this done while he’s “on the pole” this stay.  So that’s the lowdown for now. It really wasn’t ever part of the plan to head out for a family vacay in April or right before STAAR testing, or right after Jake’s surgery but as we’ve learned, plans change… constantly!  Another reminder of how little control we have… it’s all written, we’re just following God’s plan and this was another little God wink for us… It was really, really, REALLY good to get away and we weren’t quite ready to come home… as they say, “life’s a beach”… definitely a little piece of heaven on earth for sure… at least it was for the weekend!

We’re home and were able to spend the weekend back on our own turf. So nice to be home as we were able to see Cameron off to his first confirmation retreat, have some girl time with the twinstinks and just hang around the house and play. Jake is getting up and around better and better each day. He’s doing quite well, actually. He’s pretty good about protecting the tummy and the incision. Much better than you would think a 4 year old would do but as large as it is, I suppose he doesn’t ever forget it’s there. He’s off pain meds – he’d rather deal with being uncomfortable every once in a while than adding another medication to what he already has to take. When we left the hospital last week, we were ready to go, but he really hadn’t made the “check list” of things that should have given us a release. Honestly, I was a little leary as to if we were pushing too soon but the days were getting to be too much (as you could tell by that last

post) and I really felt Jake was in a holding pattern. Thankfully, one of my fave Docs, Dr. Octchu was rounding and knows Jake well and agreed with mom – Thank you to Doc O! At one point I told Sarah that we really needed to get home and was trying to elbow our way out and she responded… “good, hope you have some pointy elbows”. I liked that bit of encouragement and in the end I think we made the right move. Getting him home has given him his pantry, his fridge, his motivation to get up and around to play. We don’t have much time home as we are expected back Thursday for his next round of chemotherapy. This will be 4 full days on the pole, plus a day or two for hydration and flush. This is the combination of drugs that tends lands us back in the hospital a few days later for a couple of weeks with fever. From there we will come home for a week and go directly to the transplant team, the BMT floor (Bone Marrow Transplant – for new friends following us). That’s where we will stay for 4-6 weeks. And without being negative nilly, it is likely to be the latter. Jake is a slow and steady “recover kid”, especailly with his counts, so I have to prep for the long haul and pray hard that his marrow decides to regenerate faster so we can get back home to our family. We were in Clinic Friday for counts and they had actually tanked, which was a surprise. So if that continues this week, we may not make this week’s chemo admission. Have to admit, I wouldn’t be upset with that! 🙂 We would love one more week to rest at home before this next stage begins. As for now, Jake has had a really good few days playing Wii Skylanders – his NEW thing. He’s ridden his go-cart, and even gotten on his bike a little! But the best time came from the water balloons that Daddy brought home. I wish I had pictures from yesterday, those were the best, biggest belly laughs! It’s good to be home… and you know we’re home when the music starts playing again! Jake is a whistler, don’t think I’ve ever mentioned that before, but he’s really good and can whistle with music and his games… and his whistle is back. You know he’s feeling better and the days are good when there is music in the air. He just keeps fighting back. Each time he’s knocked to the ground, our little warrior fights back! Here is one of our FAVORITE artists. He was first discovered on American Idol, where we voted and voted and voted for him… and although he didn’t win, he’s rockin’ the music scene. This is him and his sister singing – enjoy and turn it up! You Are by Colton Dixon http://www.youtube.com/watch?v=QJQLz7Hbuew “O come, let us sing unto the LORD: let us make a joyful noise to the rock of our salvation.” Psalms 95:1

If you have a few extra seconds, I pray this touches you the way it did me. My dear friend, Tracy King, sent this devotion this morning and I want to share it with you…

“It’s so easy to forget how to hope. We have been disappointed so many times that we don’t want to risk being let down again. So we forge ahead stoically – living mechanically. Some people put their hope in problem solving, medical innovations & treatments, the stock market, the lottery, and so on. But I challenge you to place your hope fully in Me!

No matter what is happening in your life now, your story has an amazingly happy ending despite whatever lies ahead of you. Though the way ahead may look dark to you, there is brilliant and everlasting light at the end of your earthly journey. The more you put your hope in Me, the more

My Love Light will shine upon you – brightening your day and your journey. Remember that I am with you continually, and I Myself am your True Hope!”

We wait in hope for the Lord; he is our help and our shield. In him our hearts rejoice, for we trust in his holy name. May your unfailing love rest upon us, O Lord, even as we put our hope in you. Psalm 33:20-22

A faith and knowledge resting on the hope of eternal life, which God, who does not lie, promised before the beginning of time. Titus 1:2

Quick back to back posts, I know!  But we can use some prayers.  The Docs made rounds a little bit ago and today is going to be full of changes.  They took the pain pump away minutes ago and they are reintroducing the oral meds (which he calls “poison”). They are also reducing his TPN, and lastly, they are changing out his chest port needle.  That last one is the one that I am most anxious about.  As you all know he has such a hard time with access and de-access and we are about to do it all in one day.  A matter of minutes apart, actually.  And all of this with a kid that has a very tender belly and a scar that almost circles his front and side.  Rounds took place and in their calm, yet forceful Doc way, they said “Mom, this is how we get you all home.” DUH! Followed with, “You just have to make him do it.” These are not our Docs, they are the young, rounding, barely out of school Docs… AND HAVE NO KIDS!  It really makes you feel about 3 inches tall but madder than all get out.  I would really like to hog-tie a few of them, throw them in the elevator and push the alarm button.  Do they not know that we want to go home worse than they want us to go home? The anxiety is building for Mommy.  And to make things more tense, Saraben (our Child Life Specialist), Jake’s comforter, my back-up, my friend and help, the one who eases my nerves as much as Jake’s, is not here today.  CRAP!!!!!!!!!!!!  Honestly, I’m trying hard to hold back the tears and just remember to take it moment by moment.  I know that this day will pass and tomorrow will be a better one, but if you will please pray that I keep my hillbilly, hog-tying, eye rolling, want to curse you, self in tack, I would be so grateful.  And bigger prayers that the de-access and re-access go OK, that we don’t hurt Jake in the process of trying to keep him safe and hold him down, and that he isn’t terribly traumatized for the rest of the day.  These are just a few of the things that we cancer families live with and why we need better treatments… better yet, a cure!  Please, please, pray for that too!!!!!