Author: Mardon Hickford

I have to take a deep breath as I begin this as it’s taken me days to finally sit and write. Things are not good. Jake’s disease is growing stronger, much bigger. He’s in good form but there is just more and more with each scan, each biopsy. Jake’s scans have come back pretty bad and we’re in a really hard place. His liver spots are indeed bigger and there are more. And worse, the one tiny spot in the lung from six weeks ago has grown to more than we want to count. His platelets are still too low for chemo and the reason they don’t usually go forward with chemo when low is because it can bring on tAML but we are doing some chemo anyway. There’s more to it but that’s enough to deal with. Time is the ultimate goal for a cancer patient, but sometimes time can also be the enemy and because of how quickly things have changed in just six weeks, we don’t have time to get him to another hospital for a different trial right now – that takes time to get everything in order – to the tune of a couple of weeks to a month with all the red tape that goes along with these trials and moving his care. We will do two rounds of this and in the meantime we’ll see if another trial will even consider him. We’re still praying with everything we have that something comes of this. This chemo isn’t as strong as the others he’s had so we don’t even know if it will be worth what we are putting him through but if you look at him – he’s doing so well, so how can we not? BUT he’s having these throat clearings, kind of like a cough but not deep, it’s the cancer in his lungs. He’s pale and he has dark circles under his eyes at times. There are signs everywhere that it’s growing and he’s just fighting and fighting. And we are too – we will NOT STOP!  He really looks so good, it’s just unbelievable.  He’s been granted a Make A Wish trip to Disney and they called earlier in the week to say we would go at the end of April. This morning they called to say it has been moved up to next Wednesday. It’s a bittersweet adventure but one that our family is looking forward to and we are so thankful that he’s getting to do this. We’ve been inpatient since Friday night and are being discharged later tonight. He’s done well this week as Kate was with us for a few days and we had some welcomed visitors. He hasn’t had these two chemos before… Temodar/Irinotecan (or as Nurse Stacy put it “I run to the can”). It’s supposed to bring on massive diarrhea. So far, none, but they say it’s coming and it can be pretty severe and dehydrating. So we have to pray that it is milder than usual so Jake can get on that plane Wednesday morning. He’s starting to exhibit that “chemo brain” behavior… the agitation and fussiness of the drugs in his system.  Hopefully a little time in the magical world of Disney will offer some relief. I’ve said this so many times but it’s true… we are, where we are, because you continue to keep our family lifted in prayer. For all the blows Jake continues to take, he is laughing and playing, hanging upside down, and telling fart jokes because that’s what five year old little boys do.  His favorite thing this week has been an Olympic skating video that I’ll share with you so that you can enjoy it just as much as we have (wink!). He’s watched it over and over and OVER, and each time he laughs like it’s the first time he’s ever seen it. You’ve probably seen it posted all over Facebook, but if not, you’ll get a little glimpse of what our hospital room TV watching has become. Farts and more farts!    http://www.youtube.com/watch?v=zz_TBklZ4uQ

I’m going to back up so that I can go forward since there are many that read this blog but don’t visit Jake’s FB page and may

be a little out of the loop on the events earlier in the week….

As the weeks have progressed with this T-cell trial Jake has had increased leg pain. As I’ve mentioned, it hasn’t required medication just lots of warm baths. I think back to a year ago when he was on a morphine drip and how awful that was and we are far from that but it has been progressing and there has also been some tummy pain off and on this past week. Monday night Jake’s abdominal pain worsened and his tummy was tight and distended so we called in to our Doc and the research floor and made plans to get him in first thing Tuesday morning. We were worried (obviously) and all symptoms have to be reported for the trial. They did and x-ray and ultrasound and we were devastated to find that there was progression of disease. There were lots of new liver lesions and the previous lesions had doubled in size, and there was also a newly affected lymph node. We were praying the T-cell trial would push back his disease or at least allow him to hold tight. We drove home in tears wondering what we may have done to our son over the past 6 weeks… thinking how he doesn’t have time for set-backs, that progression means lack of response, which means ineffective, which means pull him from the study and move on. We made plans to meet on Friday to dissect the few trials Jake may be a candidate for and come up with our next step. In preparation for today’s meeting, the past two days have been a throw back to college cramming and moments of panic as this is so much more than just studying for an exam. All of these trials are in medical terms and I’m not medical! Two laptops, a medical dictionary, highlighters, pens, sticky notes, trial documents strewn all over my kitchen table, and LOTS of coffee are all I know of the past 48 hours. And that brings me to today, Friday. This morning we met to begin planning the next leg of Jake’s journey and while things are a bit more clear, we are in limbo for a little longer. Much of what we will decide depends on next week’s scans and biopsy. What we did learn today, which may be a little silver lining in all of this, is that Jake’s T-cell counts have shot up and are expanding beautifully. Talk about heads spinning. Frankly, this leaves all of us confused, very surprised and cautiously hopeful. The T-cells only expand (multiply) if there is an environment in which they can do so – meaning if there are cancer cells it can feed off of, then they live and grow. And this may very well be the source of his pain. What we saw in Tuesday’s tests was not pretty but we really don’t know anything more until next week. IF!!!… Jake’s boney disease is indeed responsive, everything changes! We will rethink the organ progression and the role that it plays in the future of Jake’s participation in this trial. Tuesday, we walked out crushed and today there is a tiny ray of light trying to make it’s way through the clouds. We choose the side of optimism and HOPE! We walked out with a couple of “if this, then that” plans and we have our top couple of hospitals that we’ll be contacting this week to open the lines of communication. It feels like we’ve been in this storm for way too long and the life of “limbo” has returned in a big way. I find myself wanting to fast forward to next week but then remind myself that next week will pass quickly and this cancer world is unforgiving when it comes to time. So we’ll wait and take the days God is giving and just keep praying that everything will be alright. https://www.youtube.com/watch?v=Dn7pWm4i0ZU Storm by Lifehouse

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