We are officially 3 weeks into Jake’s T-cell trial and so far he’s doing well. His counts have dipped a little but nothing requiring transfusions. We pray that the platelets will trek back up soon because as you know, this is where he’s had issue all year. They have dipped enough that if he is not responsive to this trial and we have to go elsewhere, at this moment he doesn’t meet the criteria of most of the studies available out there (most of them require 50K and he’s in the 30’s again). We have to shake our heads, this boy keeps us on our toes and our prayer is that they recover quickly and trend back upward. We were expecting some fever but so far there hasn’t been any. He is experiencing leg pain, much like pre-diagnosis. It isn’t enough to require pain meds but he is spending a lot of time in the bath tub. The warm water helps and it seems to be worse at night. He’s had lots of midnight and 2AM baths. This has us in knots and constant prayer for there are only two things this can mean… either the t-cells are attacking his disease or his disease is progressing. The legs have the largest amount of disease but it is in other places as well, so it is scary to hear that the legs ache and he is not achy in other areas. We haven’t heard the latest this week on his t-cell count and probably won’t till late next week. As of last week his t-cells were “measurable and expanding”. This lends itself to the thought that if they are showing in his blood they should be at the tumor sites but we won’t truly know for several more weeks.
Yesterday, he was lucky enough to have only one poke but he was not a happy camper because Nurse T had to go to an outside vein. He prefers the inner arms as they don’t hurt as badly but she’s been poking those so much lately that she just wasn’t comfortable going in there and wanted to give them a rest. I trust her completely… and sure enough she hit the first time. I gasp in relief every time she hits the vein and we see that little bit of blood hit that tube. Many times it doesn’t and my heart sinks but Nurse T is brilliant! Anyway, he wasn’t happy, she felt bad for upsetting him, and I was not happy with him, as he gave her an earful. Later, as we discussed the situation he

said he wanted to bring her a flower and say sorry…. his idea! So we’ll hit the flower shop before his next appointment. It’s the little things after all.

Once we were done, we made a visit to the butterfly museum on our way out of the med-center… it was a quiet day there so we felt comfortable going for a little bit. We bought a season pass this year and it has come in super handy. It’s just blocks from the hospital and there have been days when we have hours in between transfusions or appointments so we’ve been able to leave for a bit and go spend an hour or so with the dinosaurs. We’ve learned what times and which days are quiet and it’s given us many a reprieve from just sitting at the hospital. There was only one family in there with us so we had the place to ourselves. While we were there, a butterfly flew right under my shoe. Seriously! BAM! I killed a butterfly! Jake and I were horrified. We had to go find someone and tell them what I had done and then decided it was time to go. After that we headed to the post office as there was a package waiting for Jake. To our surprise, it was his pad from Cook’s Children’s Hospital in Ft Worth. We never expected to see it again so what a thrill when Jake opened the box! When he walked out of those MIBG doors September 2nd, everything that was in that room stayed there to be destroyed as it was considered “hot”, completely radioactive. We were told that they could try and see if the pad would cool down but it could take months – or it might not at all. We wrote it off actually, and considered it lost in the battle. It took almost 6 months but it’s back! Jake has been happily checking it out and playing all of his games again. Sometimes, it really is the little things that become BIG happy things!

At this point we are in waiting. Jake is being seen on the Onc floor, the Research floor, and the BMT floor gets updates in case we have to come in on an ER basis – so there are lots of people in the mix right now. He has official scan dates of Feb 11th-12th. There is a cloud hanging low right now, full of uncertainty and fear, especially when he starts asking to get in the tub. My conversations with God are constant, asking, begging for relief and mercy from this disease. But there are times the cloud lifts and we KNOW it’s because of your prayers. Please keep them coming! Pray that Jake’s leg pain is the effect of the t-cells (that we aren’t giving his cancer time to grow), that it’s being eaten away. Please pray that it is also attacking the liver spots and everywhere else. I also ask for prayer for all of our kiddos. We are 16 months into this fight and for the siblings of a cancer patient, they aren’t asked to be part of this. They are quietly expected to take on more responsibility, have less attention, push aside their own wishes and activities. They bear so much and handle pressure that many adults would crack under. Many days they make us crazy (grins) but every day we are grateful to be their parents. Speaking of the kids, they have been hot and heavy in the throws of science fair and thankfully, it’s almost OVER! Kate, Emma and Cameron have all been in the trenches of full-out projects, boards and power point presentations (which means Momma is in the middle too!) As of this coming Saturday, it’s all DONE – whoo hooooo!

I will post about Jake’s Stompin’ Out Cancer 5K soon but haven’t figured out how to get all the pics up yet. It was an unbelievable day and there are so many memorable moments and beautiful shots. So it’s coming! And to those that came out… what a spectacular day… God opened the skies and let HIS light shine! THANK YOU for being a part of Jake’s party… he had “the BEST DAY EVER!” So many friends and family came together to love on us and our hearts are full. Many have said to me that they had this overwhelming sense of peace and love that day… it was the Spirit… He was there in every hug, every moment, every person! I can’t wait to share it all with you! GOD is GOOD and we are waiting through the BIG and the little things! Jesus said, “Where two or three come together in my name, there am I with them.” Mathew 18:20

 

As we hedge into the New Year, we have much to be thankful for… our family was together for Christmas which we didn’t have last year so we were able to make memories, something not taken lightly, and the past two weeks have glimmered with joy for our children. Our family was blessed in ways we could have never imagined by some of the cutest, sweetest elves bearing Christmas gifts, Christmas Carolers with beautiful voices and friends with the most giving hearts. Next week marks the beginning of a New Year and we pray the beginning of a miracle at work. Jake will be infused with his T-cells on Tuesday, December 31st. This is really big… he will start the New Year with possibility and hope. As I sit here and write, it’s all hitting me, the significance of timing… God’s

timing. A new year, a new treatment, a new beginning. While we have been told that this is not likely his cure… there have been a few patients that it was. There have been a few that it got them back on track. So we will BELIEVE! This is, after all, the season of Hope and Miracles! Henry and I are a mess… we’re pretty good at holding it all together on the outside but the walls are caving and there is a constant, dark cloud of fear, many angry conversations with God, and the words “unfair” and “why” crop into many of those prayers. We celebrated our 24th anniversary Friday and I’m so thankful to have him to hold me together when I don’t feel I can take another moment. There are no

words that can ever describe the monster that grips our child… it’s as if he’s just within our reach but we can’t get to him. Just when we have a few good days, we have a day like Thursday, where both arms and his port took pokes… THREE moments of pain, fear and tears. Hugs become tighter, cuddles become longer, I love you’s are not said in quick stride, they are relished and have a sting to them. I find myself trying to memorize his quirky mannerisms and laughter (it’s that fear tucked so deep that I don’t realize I’m doing it until I catch myself.) There are a LOT of hidden tears. But with all of these emotions, there is joy too. Jake and the kids don’t completely understand it all and THAT is a blessing all it’s own. While they have been through so much and deep down know what lurks, they play & giggle, and argue & pester, doing all the things kids do. They still have hearts of children and I know we are standing upright because so many are praying for all of us. There is NO WAY we could put one foot in front of the other on a daily basis if the ears of God were not ringing with your prayers for our strength. THANK YOU!!! As usual, we’ve spent a lot of time at TCH getting ready for the trial and getting all of Jake’s tests/scans completed. Here’s where we are…. his boney disease showed fairly stable (good news), but there were new spots in his liver and one in his lung (the disease has moved back to the soft tissue organs) and his bone marrow shows disease again (that had cleared out after the MIBG treatment in Ft Worth but it’s back). This doesn’t put us in a very good place but we know what we’re up against and we will keep on. Jake is in good spirits, he’s energetic and “healthy looking” and has the strength and fight to keep going. So we will! We’ve had some time this week to catch up and Kate & Emma had their first haircuts since they shaved their heads in August! This was thrilling as they’re finally edging out of that chia pet stage. They’ve been amazing young ladies showing such courage, as BALD was not an easy way to start their 6th grade year. Their little pixie cuts look adorable! We are so, so proud of them!!! And for some really exciting news… “Jake’s party” as we call it – his Stompin’ Out Cancer 5K and Family Fun Day is almost here and there are 539 official registrations! January 11th is going to be a rockin’ good time! That is beyond anything we hoped for and we can’t wait to see everyone out there! There will be walk-up registration but be early… we won’t have a lot of extra shirts and the shirts are

awesome!! Trinity Lutheran School’s Art and Media class designed them and they are the heart and soul of Jake’s personality! He’s 5, it’s a 5K, he loves dinos, he’ll NEGU, and it is HIS little handprint… what else could we ask for? Speaking of the

“party”… I also want to share B.I.G. Love with you. This foundation brings so much joy and relief to the families of TCH. They stock the “poke” toy closet on the 14th floor so that every time our kiddos have the trauma associated with needle pokes, (and that is EVERY visit for a cancer kid) there is a little something special to ease the tears away. They also hit the 9th floor on Wednesdays with their carts of toys, snacks and toiletries to help families that are inpatient and can’t leave to get some of the most basic grocery or comfort items they need… like contact solution/cases, Tylenol, Midol, snacks, nail clippers, deodorant, note cards, you name it, they’ll have it on their cart! And if they don’t, they offer a weekly Grocery List Program to write down needed items and they’ll go purchase $25 of whatever you need and bring it back. I can’t tell you what this means to those of us that can’t leave our children. They offer hugs, a shoulder, smiles and help! We spent an average of 21 days a month on the floor last year and their B.I.G. Love was just that! It’s these things that bring a little calm in the storm of living in a hospital for weeks or months. Squirrel… at one point the chemo had Jake’s taste buds all messed up and the only thing he could stomach was BBQ Pringles… a dear friend, Tim, brought some and when those were gone, B.I.G. Love saved the day! Another time, Jake had been throwing up all night long and I was trying to get upstairs to the laundry but couldn’t leave him. He was in his last shirt and some undies when they came rolling down the hall… low and behold, they had jammies on the cart. I still get teary over that day… they had no idea what was going on behind our closed doors but God did… and through them, He provided. Whenever Jake saw those carts coming, the biggest grin came with them. We will have an area at Jake’s “party” to help support B.I.G. Love. If you would consider bringing an item or two, we would be so grateful. I’ll post a list soon but just bring anything that you would want/need if hospitalized! Here is a link to visit their site… http://www.biglovecancercare.org/index.html Last thing…. Jakie’s best freind, Nathan, has come back NED! I can hardly write this through the tears as this is the BEST Christmas gift a family can EVER hope for and we are so happy! Please keep Jake covered in prayer Tuesday as it will be a hard day for him… but one filled with HOPE for us! Wishing you all a Merry CHRISTMAS and Happy & Blessed New Year! “But one thing I do: Forgetting what is behind me and straining toward what is ahead, I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.” Philippians 3:13-14

This has been a roller coaster of a week for sure.  To start off, it was Jake’s week of scans so that makes for lots of anxiety for all of us, lots of running all over the hospital from appointment to appointment, lots of pokes, waiting, and fear, and some tears. In the middle of it all Jake was moved back up in the trial, which is GREAT NEWS.  But even that has roller coaster’d this week and already changed.  He was to be infused next Thursday but we are now tentatively set for Dec 31st.  We go up, we go down. It’s of no fault of anyone, just some FDA/trail findings that have to be reported and approved before the next child (Jake) can be infused (and it’s the holidays so things go slower). Jake’s bone marrow biopsy was yesterday and he’s sore today.  They had a hard time getting to one of his sites so he’s moving a little slower than he usually does afterward.  We’ll have those results back next week. His MIBG scan came back with a few sites a little darker but no new disease, it reported “stable disease”.  Thank God!  But his CT came back with a blow… there are new spots in the soft tissue. The liver lesions are back and there is a spot in the lung. The two liver spots are pretty good size, the one in the lung is tiny – they said it could be a virus but he hasn’t been sick and with the two lesions showing in the liver, we all have a gut feeling that it isn’t viral.  Talks have become more serious and the volume has lowered while we sit in discussions so not to alert Jake of it all. He’s bouncing around looking so healthy… it’s just all so unbelievable. The phrase “poor prognosis” is coming up more and more, and the word “cure” much less, so we tell him what he needs to know and we protect his little ears from too much information. Our Handsome keeps on because he doesn’t know otherwise.  Henry and I have been highly emotional and while we should be relishing this time, there is such desperation and sadness… fear really. I find myself spending endless hours researching, trading sleep for information, and diving deeper and deeper into the NB world… Henry too. I keep thinking of so many of our hospital family that would do anything to be where we are right now and my heart hurts because they will be one less this year as they gather for Christmas.  We have Jake’s toddler bed in our room, he’s been sleeping there since he was diagnosed. When he’s sick from all the treatments, it’s made getting to him so much easier.  Early this morning I could hear him breathing so I scooped him up and put him in bed with us.  He didn’t even wince, just nestled in and slept on. He’s such a cuddle bug and this momma needed to hold her baby.  So, I’ll close asking for your prayers…….. for joy in our household, that Jake’s bone marrow remain clean, for all of our kids battling, for our cancer family that have had such loss this year, and for God’s blessing on this trial. We need a miracle!  Specifically, I’d like to name some friends so that you too can pray boldy for them… Grant, Taylor, Nolan, Pearl, Timothy, Charlie, Caleb, Bryce, Wyatt, Amani, Nathan M, Nathan L, Carson, Patrick, Hunter and so, so many others (those I didn’t list, forgive me).  Please pray for their healing and protection, for pain free days, for joy and courage, and for strength and guidance for their families as they care for their children and make decisions that only God can help with. We pray also for all of you, for you have blessed our family beyond measure. All our love and Christmas Blessings to you and your families! “He will be great and will be called the Son of the Most High. The LORD God will give him the throne of his father David, and he will reign over the house of Jacob forever; his kingdom will never end.” Luke 1:32-33   Wishing you a little “quiet” so that you may listen and reflect on the greatest gift of all….  http://www.youtube.com/watch?v=EosUH0orVUg  “Here with Us” by Joy Williams