Category: Mom’s Blog

So many of you have adopted our fight as yours. As we begin our second round of intensive chemotherapy this weekend, many of you will have Jake at the forefront of your weekend too. Your activities will center around our son. There really are no words to express our thankfulness. I’d like to list some of the things that are going on and ask you to pray over them and all of our precious friends who have worked so hard putting them together, as well as all of those who will be participating. (You can check out the calender section to the left if you would like specific information). There is a Chick Fil A night that Jake’s pre-school, John Wesley United Methodist Church has graciously ramped up. It’s Thursday night and we hope you will come and say hello. In Austin, my dear friends, Shana, Diane and Rebecca are hosting a Fit For Jake’s Life morning of workouts and fitness fun on Saturday morning. All of our Austin friends, please check it out and give them a BIG hug from us. One of my dearest best friend’s little brother, Tyler Haugseth, is running and fundraising on Jake’s behalf in the Malibu Half Marathon in LA this weekend. We wish him a great run and an even better run time! And, the Bodin and Dill Families are walking on Jake’s behalf in the Woodlands for a Walk in Memory of Hans Wendling and Neuroblastoma Cancer (their shirts below). Hans fought hard and at nine years old, he lost his battle after six years of fighting. Our prayers and hearts are with this family and we wish everyone a joyful day in his memory. Many will be walking in his honor and to support Neuroblastoma Cancer. So many things this weekend! We are touched and so grateful… and we LOVE you for loving us. While this is of your will, I know that this is only done because of the love Jesus gave us first. It’s through his love that you love us and we are deeply touched. And as I sit and write this, there is a song playing on my

radio… “Your love never fails, it never gives up, it never runs out on me.” I’m reminded… Give thanks to the LORD, call on his name; make known among the nations what he has done. Sing to him, sing praise to him; tell of all

1 Chronicles 16:8-10

Today we got out!  First, we went to church. How nice it was to sit in God’s house and just reflect. We snuck in late and sat in the way back – the area that is roped off.  A good place for us, out of reach, and an easy in-and-out without much notice.   Even though we were unable to talk and hug friends, there was a peace about being among everyone from a distance.  We left during the last song… all of us walking on air.  It was really, really nice.  AND, later we headed to the soccer park for Cameron’s last game of the season.  Again, we sat to the side, but how nice it was to get outside on this spectacular day.  The weather was perfect and it felt so good to get some fresh air!  Jake actually got out of the stroller to walk a little.  He hasn’t truly walked in weeks.  I followed closely… part momma bear… mostly because someone has to hold his pump and fluids.  He walked around for about 15 minutes – he was happy and it wore him OUT!  After, he crawled in my lap and slept the rest of the game.  And…drum roll… actually, how about sounding the team’s big antler horn… our soccer Ninja’s won!  Way to go boys!!!  This is a group of kids who have spent years together and what a pleasure it has been to sit on the sidelines with our soccer family and cheer them on and watch them grow up together.  As we all parted today, they showered us with hugs and prayerful thoughts and a BIG basket of love from the team.  Thank you for such wonderful gifts… we love you too!!!  So, Jake grows a little stronger each day and our prayer family does too.  XOXO

Crazy, Busy Day… trekked into TCH for labs and transfusions, so we were prepared for a long day. We were praying for good counts so we wouldn’t have to infuse but we brought our bag of “stuff” – blanket, pillow, game pad, snacks, his PTN fluids in a cooler – all of what will become the usual bag of tricks for days like these. The Infusion Room is the place where all the outpatient kiddos who are taking a daily chemo treatment or transfusions hang. There are TV’s, video games, a toddler playroom, books, rockers, big comfy chairs, and quiet areas for those kids that aren’t feeling well. It’s a happy looking place, which is good considering there is much suffering and sadness that these families endure. It’s a place where the kids can come and be kids. Everywhere you look there are “poles”. Kids hooked up. We got there and Jake had to take a “prick” since his port is accessed for fluids right now. Not good! He is SO tired of this and you could probably hear him from the 14th floor all the way to the 1st. We did survive and off to the toy box we went… a Transformer!!! Woo hoo, maybe that was worth it???! Not really, but he loved his Bumblebee and the tears dried. (Whomever the charity or ministry that fills the “I got a prick” toy boxes – you are angels!) We found a good spot in the toddler area with a window bed offering a good place to lay down and rest – an easy place t0 change his fluids. A good comfy spot for us… then we waited. There is so much waiting with a disease like this. Today, we

were waiting on “good numbers” so we could hit the road. While we were there we did see and old neighbor (who looked great), a friend we met last weekend on the 9th floor (she’s three and will be back on the 9th floor next Friday when we go back). She’s the most beautiful little girl with bouncy curls and the most precious name… Pearl. (Side track… Prayers that both Jake’s and Pearl’s treatments go well next weekend so they can “get out on the floor” and in the playroom to play together.) We also made a new friend and he’s also four. So many little ones. Good news came back and there was no need for transfusions – YAY! They didn’t have his ANC back but said we were free to go and would call with it – said we may have to be in on Tues for recheck depending on that number. But for now it was an easy in and out of less than two hours, rather than the whole day hooked up. Once again, we hit the road running! We definitely have to go in next Thursday to prep for admission for Thur night or Fri morning but for now we have a week of freedom. On our way home, we HAD TO take a swing past the House of Pies and pick up a chocolate pie to celebrate. There is so much to be thankful for… a week home, a short day today, and good counts. We even made it back to our side of the world just in time to pick the kids up from school! God is good! Hallelujah!!!!