Category: Hospital Stays

Today we are home! We continue to have the nausea breakthroughs and he’s definitely slower than usual but when the meds hit his system and hold for a bit, he’s happy and playful. He made it to the game room again the day before we left for a few minutes and was able to play Wii with a his brother and sister and friend, Patrick. Jake didn’t stay too long but he was able to play for a few minutes. By this stage of the chemo treatments, his little body is tired and worn out. One of my oldest, dearest BFFs, Ali, visited Monday. It was so good to see her and she brought cupcakes! She’s a baker by profession… as in an amazing, super talented, cake maker. Not only are her cakes and confections beautiful but they are so, very, YUMMY! She just did another one of our BFF’s parties last weekend, check out the pictures – the table was full of glam and so delish. So if you need cakes and table/party decorating seek her out at Confectionately Yours, Ali’s Cakes (plug plug!) Also, my wonderful MOPS group sent dinner in the form of the best salad I’ve seen in a long time… Thank You! And thank you to Sarah for dropping it off. It’s so nice to be home… we will be back at TCH Thursday for blood draws and transfusions but for now, I share Jake’s sentiment as he said this morning as he woke up, “I lub my bed!” I also want to thank everyone involved in the Bake for Jake Sale this Thursday night. We are so thankful for all you are doing and I can’t wait to see you all and give you big hugs. For now, we have three and a half weeks to get Jake’s counts up and his lungs clear in time for surgery. The new date is March 27th. He’ll spend most of that time neutropenic and isolated as his body works hard to prepare for him to go to war in a

big way. Unknowingly, our little warrior will be suiting up. This surgery won’t be the biggest procedure he will endure but it will be so very HARD on his little body and the biggest yet – so we march on! We ask you to keep him in your prayers over the next few weeks… that his body will respond in a mighty way to all of the chemotherapy he’s been through, for his lungs to heal, and for us all to prepare physically and emotionally for this next step. “For you who revere my name, the sun of righteousness will rise with healing in its wings,” says the Lord. Malachi 4:2

You know we’re home when I share songs… so here ya go… this is our song of the day, turn it up LOUD and sing with him! Hello My Name Is, by Matthew West http://www.youtube.com/watch?v=mJlCj9_Sfj0 BTW… Jake’s middle name is Grayson and from the day he was born we would rock and rock, with him nestled in my neck, singing Amazing Grace. The song references this song as he sings, “Hello, my name is child of the one true King, I’ve been saved, I’ve been changed, I have been set free. Amazing Grace is the song I sing. Hello, my name is child of the one true King!” Check it out and turn it up!

We are at TCH right now and have been here since Thursday. Jake is in the midst of a long chemo stay. We have four days of chemotherapy, a full day of flush, and the last day is a nasty Nulasta injection. We spent Friday trying to find a place to play that made us feel like we were outside. So we planted ourselves in the window of the bridge that connects the Clinical Care side to the West Tower side of TCH. It’s a really bright spot with great views. The first two days were a breeze but by the second night, the nausea hit. Fortunately we’ve had this chemo combo so I know what to watch for and I’ve been able to see the trends throughout the day. There’s been some laundry to do but not at all like the last time. This morning started a bit rough and he really hasn’t been himself at all today. We did make it to the playroom this afternoon but the pictures tell the tale of a little boy that has all the “want to” but just can’t muster the energy to play. We’ve adjusted his meds several times and can’t seem to get it quite right. We thought we had it covered but tonight, it broke through again. There is NOTHING left in Jakey’s little tummy. It’s also been nice to have a few visitors. Thursday Henry’s cousin, Steven, came bearing a spider man ball. That was a big hit! Friday, Tracy spent the morning playing dinos and taking Jake on pole rides. Ryan spent the weekend with us. Saturday our Great Aunt Tuddy and Great Uncle Richard came for a really nice visit. And today as worn out as Jake is, he was super excited for Adriene to come play. He perked up quite a bit when she got here, only to completely crash after she left (I bet she wasn’t even to the elevators before he was out.) It’s also been a bit crazy as there is a particular chemotherapy bag that starts each night at MIDNIGHT and I have to pee him every hour for six hours straight. That’s FUN! And exhausting! Yesterday, the ativan had him wired! Some people get a little sleepy, not Jake. He was bouncing all around the 9th floor. Over and over, I heard our nurses say, “he is soooo CUTE! And ALL boy!”. I’m taking that as “super adorable and high energy”, rather than, “wow, he’s a mess!” Hard to believe it’s been a month since we’ve been on the floor and several nurses have commented on how good Jake looks. As we’ve played in the halls and stopped to chit-chat, many of our them have recalled the early days of taking care of

him and how withered and sickly he was. To look at Jake today he has cheeks and bounce, he jokes and he’s goofy. Shelly even pointed out that he has some very blond, baby peach fuzz growing on his head again (that will disappear after this chemo but it’s nice to see). We see him every day so his changes gets lost in the daily grind. Our nurse Maria, was joking around with him all weekend and remembering how afraid and angry he was in the beginning. After reminiscing with her, I sat down and went through some early pictures. To see his journey and progress, gave me such hope, comfort, actually. There is still such a long road to travel but Jake is fighting so hard… he’s kickin’ cancer’s butt! Each treatment is taking us one step closer and I can see there will be

an end one day. Even in the middle of all the “fro up”, healing is happening!

So it’s Lucky #9… The neutrophil dance must have worked yesterday because NINE DAYS LATER, we are headed home!  As I sit and write, Jake is juicing up on platelets, yet again, so we can leave this afternoon and make it through the weekend.  His ANC is still really low at 170 but they are giving us our Freedom Card and we’ll take it!  That means the kids will strip and shower when they walk in the door from school!!  Usually they don’t let Jake leave until he hits 250 – 500 after a neutropenic fever hospitalization.  For you and me, this would signal something really bad going on, but for a cancer patient, they are considered out of the “severly dangerous neutropenic zone” and heading toward “normal”.  In no way is he free and clear to go into the big world of germs and crowds but he can go back to the isolation of his own home.  (In case, you were wondering, a healthy person has an ANC of between 2500 – 6000.)  We have a few days home and will be back here for the day on Monday so we will rest and enjoy.  The past couple of days, we were both hitting some low spots, the isolation and loneliness is hard and not seeing a discharge date in sight wears on you.  But as I like to quote my friend Scarlett… “tomorrow is another day”.  AND IT IS!  Jake is telling everyone that walks in our room that he’s going home, we’re all smiles!   Thank you all for praying… I know there were a couple of big prayer requests that circled yesterday among my church ladies and I’m so thankful.  Thank you to EVERYONE of you for lifting Jake up, my heart is full of joy today, I wish I could hug you all and you could see the happy dance going on in here this morning!