Author: Mardon Hickford

Here we go… another week of chemo. It’s tough on him but it’s keeping him stable and we are so thankful for that. This chemo combo seems to be changing a bit with each cycle. We’re seeing more nausea. Today, he’s already been sick 4 times, sweet baby. He’s getting more nausea meds as I type this. Today will be a long day on the pole… he’s already in need of platelets again so he’ll have his nausea meds, chemo, transfusion pre-meds and then platelets.

It’s been quite a morning as we got here without Blankley. Yes, his name has changed somehow. It’s no longer Blankedy, it’s now Blankley. That started the day with major fall-apart potential. But we checked in, explained the situation and our Doc said go home and get it. THANK GOD for understanding Docs (who probably had a blanky too – I’ll have to ask about that?!) For a kid that goes through so much, he makes us laugh all the time. On the way to the car, he was skipping and singing about going home to get Blankley. Then he proceeded to tell Kate and me that Blankley will be so happy to see him again because he has feelings and is so sad when he’s alone. (Mind you, Blankley was only alone for a couple of hours). Once we got all settled and his belly in check, he asked me to go downstairs and get him some strawberries in the cafeteria because as he explained… “I need to be berry healfy, mom”, giggling and thinking that he’s all kinds of funny! There were a few tears today between being sick to his tummy, his access and Blankley but the clouds have cleared and here he sits, the bravest little boy I know, ready to tackle this week, with his silly-boy sense of humor, talking about getting back to his computer and swimming.

He’s doing well otherwise. The last scans didn’t show the kind of improvement we saw with the previous ones but he is stable for now and that keeps us here, close to home at TCH, for a little bit longer. It’s said that the first dose of a new chemo is usually the most successful due to the fact that the cancer hasn’t seen that drug before. This certainly seems to be the case. He’s having a lot of transfusions right now between treatments but he’s feeling really good

most of the time. We did have a bit of a scare last week as he ended up sick from something he picked up in the hospital playroom. With the disease in his lungs we all panic. But he’s feeling much better now. Actually he was able to attend our friend’s cancer event last weekend in support of Jackie’s House and play on the big slides. He did great about staying out of the bounce houses but we found that the heat and activity didn’t mix well for him. He started getting sick so we had to call it an early day. Next week he’ll have one of his “slow weeks” and only have to be here two days, then the following week we’ll scan again so we can see where he sits to know if we can continue on with this treatment.

The kids are all out of school. In fact, we had quite the first week of summer as Emma came home early from camp due to getting sick. Then Kate came home because there was an armed foot chase through the camp and they felt it best to pack up 200 kids and send them all home. Ryan (who was at a different camp) received the Knowledge Award and we had to laugh… you see he is our talker. He loves facts and debate, and he especially loves talking to “older people” and can do it with ease. We say he’s going to be our attorney or politician. Cameron is about to get braces shortly and is super excited. And Meg is trekking along at MDA and really loves it (don’t think I mentioned it on here but Meghan has left the retail pharmacy world and is now working at MD Anderson) and we really love that she can walk over and visit. So, to all of our MDA friends, she may be the one mixing your chemo bags and handling your meds – ya never know?! We’ve spent our first couple of days of summer prepping at the dentist and ortho offices. Actually, we’ve been to the dentist, orthodontist, orthopedic, pedi, and all of Jake’s appointments in just one week – this first week of summer has been our medical “catch up”. Whew, even when we don’t have to be at the Doc for Jake, we are at the Doc for someone else. In a nutshell, we are trying to give them some kind of normal but I suppose “normal” is relative and ours is a crazy kind of normal no matter how we try (grins). Will wrap up as Jake’s machine is beeping (and he’s making his own beeping noise with it “meeeee, mooo…… meeee, mooo…… meeeee, mooo……”). I really must record that one day – he’s rather loud. It’s part obnoxious and part silly. Happy Summer Y’all!!!!

Today is Jake’s 6th birthday and he has been counting down the days. He’s so deliriously happy! A few months ago, we weren’t sure if we would see this birthday and we don’t know if we’ll see next

year, but WE HAVE #6! I’ve thought a lot about the fact that each of us have a number of days laid out for us, and although we don’t know them, God does. Psalm 139:16 says, “Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them.” I’m glad we don’t know this, for as all-consuming as this disease is, we are able to enjoy our good days and are even thankful for the hard ones. Some days when this is so overwhelming, I remind myself that my days are numbered too… and Henry’s, and all of our kids, and strangely, it brings a little peace.

As for today… it’s a Minecraft kind-of-day! All and everything Minecraft. He’s been at TCH this week for labs and transfusions and we’ve waited till the last minute to decide if we can do anything. Although he’s low, he’s not neutrapenic… he feels good, looks good, and has energy from a go-go-gadget platelet transfusion yesterday. So rather than staying home, later today we’re heading to the empty, little park close by. He can’t have a big throw-down with lots of friends but he’ll have a couple of special people and will be flying high just to be out playing and celebrating. The picture above is from last night… a very special best friend, Trey, brought a little surprise. I heard the dogs next door going crazy, I even commented to Henry, but it wasn’t till Gunner made some noise that I checked. By then they were gone, but the banner and glowing balloons were there. What a blessing that these little boys have each other.

For some more BIG NEWS… Jake had his first hair cut in forever. The last time it was cut, he was four years old, we were in a hospital room on the 9th floor, in silent tears, as we tried to trim the clumps that were falling from his head. This time there were smiles and giggles. As his hair has come back, it’s this ashy, wavy, highlighted, thick hair. Not at all like the blond, baby-fine, bowl-cut of pre-diagnosis. He hasn’t liked hearing about his curly hair. He rolls his eyes and says “it’s NOT curly”. So when he asked for a haircut last week, we loaded up after chemo on Thursday, I asked for the emptiest time they had, proceeded to wipe down every inch of the chair, and let the stylist go to town. He loved it! And he looks so different… like a boy. Our toddler has disappeared. Cancer, and time, has taken our baby and turned him into a little boy… but he’s so stinkin’ cute, isn’t he?! And we THANK GOD for the time!

Jake just came off of a week of treatment and it went much better than the last – which I didn’t write about, actually. Couldn’t bring myself to sit and write about that week and all the chaos of it. It was a horrible week for him and we needed a do-over, which we got with this round, and it did indeed, go much better. We will scan next week and see what the last two treatments have done. We are optimistic that we will see good things as the last scans really took us by surprise in a very good way. We are still under the care of Texas Children’s as the other hospitals have not panned out. Mostly due to the fact that this chemo combo showed some improvement for Jake with very minimal marrow suppression. He can do this a few times before we have to pull it and since we know of it’s effectiveness, it’s not in his best interest to begin a trial.

In the meantime, we continue to be very cautious of getting out in public but we were able to head to the beach for Easter weekend. It was so nice. I have to share this… I’ve mentioned that Jake has 3 fractured vertebrae (that’s one area that didn’t show improvement, actually worsened) and we’re instructed to keep him “in line”, no jumping, falling, bounce houses, trampolines, jumping on beds… on and on! In fact, he has an appointment with the orthopedic because spinal collapse is a fear. He’s FIVE! It’s REALLY HARD! While at the beach, I took a thousand pics. I have a picture where I was trying to get Cameron and to the side you see Jake jumping one of the beach holes, hair flying, hands out, feet off the ground – he’s in mid-air! Then, as we were coming across the beach access bridge one day, Jake came barreling down and ate it! Slid right off the side, catching his inner thigh and has a bruise the size of an orange to prove it. That about sums up how we keep a 5 year old still. (Look at that hair – so gorgeous! Still can’t believe we cut it.)

As always, I like to close by asking for prayer… please pray for my nephew, Jake’s cousin, Matty. He’s has had two brain surgeries in less than a week. He’s doing well and we ask that you keep his recovery and his parents covered in prayer. I’d like to request prayer over all those nurses, doctors, child-life specialists and hospital staff that care for our cancer kids. We have been blessed by some of the best and I can only imagine what they deal with on a daily basis. I also ask that you will keep all of those parents who have lost a child to this monster in your prayers. I have so many of them on my heart and really don’t know how they get through their days. I pray that they feel God’s presence at all times. As we celebrate this special day, our hearts are bursting with joy and we wish the same for you! Happy Birthday Blessings, Handsome!

After months and months of tears and setbacks… we walked out of scan week with some good news. Scans are showing improvement in all areas except one. Jake has three vertebral compression fractures and while two of them were stable, one of those shows progression. The radiology reports from all of his images are back and state, “there is a dramatic improvement in number and distribution of multiple pulmonary nodules… and the number of lesions detectable within the liver has decreased.”  This means the spots in his lungs and liver are less. There is much more to the reports but those were of the most concern after his last scans. His boney disease also showed areas of improvement and appears to be mostly stable. Praise Jesus!!!!!!!! It’s not over, till it’s over! And this little man is not giving in! We don’t know what his bone marrow shows since we didn’t biopsy this round – we know it’s there and measurable but it isn’t our top priority at this time. There is still a lot of disease but to know that we put a dent in it after months of progression is encouraging. And what’s more… the areas on the last scans that appeared to be improved WERE indeed IMPROVED. There was question as to the validity of those areas because of how much disease progression showed up last time. There were actually two areas that appeared better 6 weeks ago, his right leg and the skull. We were told that it could be that this is where the T-cells latched on and attacked (they were measurable, after all), or it could be that there is only so much contrast that is injected for these scans and with all of his disease, there wasn’t enough dye to uptake in those areas. Well, guess what… it wasn’t an uptake issue. The scans still show those areas as decreased disease. So, take that!  The T-cells were there! They WERE working! What we think, is that Jake has too much disease to be ready for T-cell therapy and this may be more of a 14.18, residual disease, type treatment (now take this with a grain of salt, this study is way too early to have any official findings – this is only speculation at this point). Anyway, it’s been a long but good two days! I will say, it started a little sketchy yesterday when we learned that his platelets dropped again and we had to close the place down after scans with a transfusion but we did get to catch up with friends and that’s always a nice diversion for both of us. Jake and Charlie were able to play on their pads together and we mommies were able to catch up. I definitely enjoyed the time to visit. Please keep a few little friends that we were able to run into in your prayers…. Nathan, Charlie and Wesley, all Neuroblastoma fighters. Radiology was full of our NB warriors this week. And I have to share, it took us over 2 hours to get a 50 minute MIBG done today. I won’t go into all the details but there will be a letter heading out as there is a radiology nurse that really should consider another line of work. One of our nurses, Jason, was kind and helpful, but the other, not so much! So for now, we start another round of this same regimen on Monday. It’s five days worth of chemo, which by the way, this chemo combo is not used as upfront therapy because it only has a 30% success rate for most kids. Wouldn’t ya know, something we try as a last resort works for Jake. It brings me to something else going on in cancer research. Dr. Sholler in Michigan has a Guided Therapy Gene Analysis Platform study for relapse and refractory neuroblastoma patients where they determine a tumor’s molecular makeup to help predict which drugs may be beneficial for a patients cancer so they don’t give these toxic chemotherapy drugs just because it’s protocol. They offer personalized treatment based on that person’s tumor expression. Talk about the wave of the future right there! Oh, how I wish we had that 18 months ago! Jake’s platelets might be in a different place if we had known what drugs work and don’t work on his cancer. We could have chosen medications specific to his genomic make-up. The same neuroblastoma cancer can have different gene expression profiles and what works for one kid, may not work on another. This is why we need these trials. We need to get the word out. There are researchers out there making huge strides but they are blocked by something as simple as funding. Jake isn’t in a place for this to be much benefit to him anymore… he’s had most of the drugs out there and his marrow is shot. BUT there are kids out there in the beginning stages of their treatment and things like this could be their miracle. HELP us fund these trials!  Spread the word… PLEASE SHARE Jake’s story and others like him so people know! And THANK YOU!!!!!  So many of you are doing that. You walk this road with us, allowing us to lean on you and share our daily struggles, and for that we are forever grateful. Today is small in the scheme of Jake’s journey but it sure feels like a BIG thing. We are blessed by your constant prayers and we draw strength from your support on those days when we feel so discouraged. Better yet, we are thrilled to share Jake’s celebrations of days like these. They are far and few between but when they come, we hold on and ride the wave! God bless you for jumping in with us! Today as we were riding home, the story of Jesus and Peter popped into my head, reminding me to trust…

“Lord, if it’s you,” Peter replied, “tell me to come to you on the water.”  “Come,” he said. Matthew 14:28-29

Peter went out to Jesus but fear set in and as he began to sink, he cried out, “Lord save me!” Jesus reached out his hand and saved him. We, like Peter, in our doubt and fear must call out to Him. He will save!

Keep praying and singing… “I will call upon your name, keep my eyes above the waves, my soul will rest in your embrace, I am yours, you are mine.” I just LOVE this song… Oceans (Where Feet May Fail) by Hillsong!  http://www.youtube.com/watch?v=ga3DmPRPAQQ Turn it up!