Another scan week is behind us and before I get into all of that I have to say a BIG THANK YOU to our church family, Trinity Lutheran Church. While Jake was at the hospital this week, our church's VBS was in full swing and my friend Gennie sent this picture of her group praying – they were lifting him in prayer. I can't think of anything more precious and touching than children praying for children and we receive notes regularly that your children are praying for Jake. This has moved me to tears on more occasions than I can count and this was no exception. There were a few sad mornings for Jakey knowing that he couldn't be part of VBS while his brother and sisters headed out but I was able to pop in and purchase a t-shirt yesterday so he could feel included and that brought a BIG smile. Each grade had a different color and he was elated that his was blue (big brother Ryan's was neon pink – you get my drift!)

As for scan results, I posted most of this on FB. I've added a little more detail here but there is a line below if you would like to skip past this part. The good news… Jake's lungs and liver are stable. In fact, it appears that one of the large spots in the liver is trying to dissolve. And there is now one good size spot in the lungs but the others are barely detectable. This is really positive in comparison to a few months ago when there were too many to count. There is nothing new in the bones, but there is question over an area in the leg… whether it's separating and spreading or if it's attempting to dissolve and just breaking into two areas. We won't know until the next round of scans. For the bad news… his marrow is showing more damage. We feel it best to back off and give some extra time before this next cycle to see if this helps relieve some stress on his bone marrow. The fear is that too much time in between treatment may cause the chemotherapy to be much less effective. There is no cut and dry answer here as we are not on any form of NB protocol, he's off the map as to how and when to dose him. Due to his platelets being so beaten down, we are bumping them each week in order to get him to a "mark" to administer chemo and that mark is not even half of where his counts should be to do these treatments. I'll use this as an educational moment… to give you an idea, a normal platelet level is 150K-450K for you and me. To receive chemo he should be >75K, but he is usually in the low 30K's… that is WITH the bumps from transfusions. We've learned that this is causing elevated MCV levels which can indicate early signs of myelodysplastic syndrome, which is a type of cancer in which the bone marrow does not make enough healthy blood cells and there are abnormal (blast) cells in the blood and/or bone marrow. This can be a precursor to AML, Acute Myeloid Leukemia. One of the statistics that you hear in the pediatric cancer world is that many children will beat their cancer, only to die from the treatments… chemo-induced cancers are the big fear and not curable. The very drugs we give to cure our babies, kill them in the end. Some children don't ever beat their first cancer before the next one manifests and this is their fear for Jake right now. (This is why we need so much more AWARENESS, research and milder treatments FOR children!) Because of Jake's history and marrow damage, he is a prime candidate for this.  We knew this was a possibility, but when there is nothing to draw from, you take what's on the table. Still, no matter how you've been warned, it stings. For now, we'll take this extra week to watch his CBCs, rest and juice him up on transfusions, and PRAY that his MCV levels drop while we try to decipher what we've learned.

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With all that said, I don't want to end on a low note… I'd love to share a few things… happy, normal things. I'm often asked if Jake is confined to bed or lives at the hospital. And as much as I say "we live there", we really don't. He's spends several days a week at the hospital and we go back and forth between Main Campus (Med Center TCH) and West Campus (Katy TCH) but he feels pretty good most days. Because his immune system is so jeopardized, he's very isolated, but he's all boy and full of life. Right now he's learning the calendar (days of the week/month) and on his own, he started adding smile or frown faces to certain days. You can guess what the frowns are for and it's helping him understand that we take each day as it comes and the hard days do pass. He would get up every day and ask, "do I have the hospital today?" Now he can head to his calendar to see the plan and prepare for those frowny days and enjoy his HAPPY face days.

Speaking of happy, we had a few hours in between scans one day this week, so we headed to the museum when it was early and quiet to say hello to the dinos. It's always funny to see Jake run to his favorites first and then venture to things that catch his attention. This trip, he wanted to stop and actually read (have me read) a few that he's never paid much attention too and he stopped for a long while at the wall of homo sapiens. We didn't read much there, he just walked along the wall taking it all in. I can see there is a lesson coming soon. It made me think of Jake's love of Bigfoot so I went searching for this video from a few months ago and when I found it last night, I  watched it over and over and thought I'd share. We watch a LOT of Finding Bigfoot episodes and this is Jake's version.
 

[youtube=https://www.youtube.com/watch?v=nB_K1_eShpw]

I just LOVE this! At the time, I didn't know he what he was doing, just thought he was playing with my phone. Nope!  He was directing his own Bigfoot clip.I'll close soon but will first ask for prayer over all that we have learned this week and the decisions we have made for Jake's next six weeks of treatment. It's been a hard couple of weeks for our cancer family. We've seen two friends relapse, two lose their life to this disease, and another family heard those awful words of diagnosis. Please PRAY for all of these families! We head to Chicago mid-July with Jake and pray that we'll learn something new that may be available to him. The past couple of weeks were not easy for him as this last round of chemo threw him for a loop in a way we hadn't seen in quite a while so we welcome this week's rest and hope it will allow him to go into the next round swinging a little stronger, ready to jump that plane for Chicago.

 

I'll sign off with this picture… this is our friend Fernando. He runs the golf carts at West Campus and has become a very special friend. He knows our schedule, watches for our truck to pull in each day, then drives up before we even open the doors. For most TCH visitors, he kindly picks them up and drives to the front doors but for Jakey, he makes an extra big circle of the parking lot, taking the corners super fast while Jake squeals with his hands in the air. Fernando has become part of our cancer family, he's a very good man, he prays for Jake, and at the end of many hard days, he's been there to lift Jake's spirits. Along with your prayers, I believe that people like Fernando keep our little fighter swinging back as the punches come, and we are BLESSED by the love and example of so many kind and gentle friends.
 

Be an example to the believers in word, in conduct, in love, in spirit, in faith, in purity. 1 Timothy 4:12

 

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!