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
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