Category: Mom’s Blog

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Came and Went

So our first inpatient holiday came and went and we were released late Friday afternoon. Our special weekend with all of our visions and plans and expectations got off to a rocky start but it definitley finished well. We were able to have a belated Thanksgiving dinner on Saturday with my mom, and Papa (Henry’s dad). We did get the Christmas tree up and although we weren’t able to celebrate Meg’s birthday as her family was under the weather, we were home in time for Ryan’s. And… we had a wonderful visit from dear friends, the Byrd family. Davis and his baseball team won their season and Davis wanted to honor Jake with his trophy. Davis has been sharing Jake’s journey with all of his friends and handing out bracelets… just look at this awesome picture of all these handsome and excited boys with their trophies and their “Make Cancer Extinct” Jake Bracelets. They have been praying over Jake as a team… what a tremendous thing for this mom to hear, that these young boys in Midland, Texas pray over our son regularly. I picture angles circling Jake each time there is a prayer said for him and rejoicing when it is from children for children’s prayers are the most inoncent and special. It was such a happy visit and I loved how Davis just sat right next to Jake and started playing, never missing a beat! Some of his friends are stand-offish. They don’t know what to say or do with him… a little afraid… he doesn’t look like the Jake that they know. Davis came in and just started playing and talking and laughing with him. As I’ve played those visions over and over the past couple of days, it has made my heart so very happy. These are the little blessings of goodness that you find in days like these… thank you Davis! We went in yesterday for labs and were relieved that it was a short day and his numbers are on the rise. That means we head back in Thursday for Round 3. It’s already time again. This round will be new chemo drugs. So far we’re 2 for 2… 2 chemos, 2 unplanned neutrapenic fever hospital stays. We’re hoping that this next 3 weeks goes better. It will be another 72 hour infusion and we ask your prayers over his stay. The intensity and types of drugs that these children endure is often more severe than that of adults. Their little bodies somehow handle it better than our older, more contaminated bodies, so they hit them with all they have. It’s always tricky and dangerous. The side effects can be horrible, even permanent and lifelong. The risks are always high and we walk in never knowing how his body will handle these treatments. Even the same drugs can have different outcomes… it really is all a big lab experiment. This treatment puts us out on Monday, which means by our tentative schedule we will be back for Round 4 December 20th with a release of the 24th, Christmas Eve. What a gift that will be, to be home for Christmas. Of course, it’s all day-by-day. We will be praying for a Christmas at home for sure. But we have a friend that won’t be, and I ask

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your prayers for a little boy named Charlie. I’ve mentioned him before. He started his stem cell transplant today. He will be in isolation for 30-45 days, that means Christmas will be spent away from his home in TCH. As Charlie’s parents said in his blog, “Charlie is going to walk a path that few others have to walk. He is going to walk to the edge of death, and from there he will be rescued back”. I can only imagine the fear and anxiety that his parents will be facing, the readiness for this part of the journey to be over; we too, will soon travel this path with Jake and my chest tightens and eyes swell just writing those words. It is something we know is coming, it’s tucked away but it lurks and we try not to think of it too much yet, for we must push through these early days – that’s a hurdle we’ll jump when we get to it. Right now, I pray for strength for Charlie and his family. Please pray with me for Charlie. Please pray each day for him. Through their waiting, I pray for Charlie’s healing, for comfort, and for the BEST Christmas ever… for our Healer to grant them their greatest Christmas wish. “I am still confident of this: I will see the goodness of the LORD in the land of the living. Wait for the LORD; be strong and take heart and wait for the LORD.” Psalms 27:13-14.

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Thank You Peach’s Neet Feet

Blessings come in the cutest, small packages, like that of a toddlers size 10 sneaker… and they are adorable!  Peach’s Neet Feet, with the help of the Gladiators and Trinity Klein’s 7th Graders, honored Jake with his own special pair of hand painted sneakers and they are SO, SO cute! They are complete with a Stegosaurus, yellow ribbon for childhood cancer, and his name in the coolest super hero script.  How blessed we are to have friends we know and those we don’t, to support Jake’s fight!  And the way this little man travels, these will certainly aid in that fight… carrying him to a day that is cancer free.  And now that we know about Peach’s Neet Feet, it warms my heart to walk the halls and see other children with their shoes and know exactly what it means… they too have supporters that are cheering them on to a day of freedom from cancer!  Each pair of shoes is hand painted especially for that child… such heart and care goes into these special sneakers.  Check out Peach’s Neet Feet FB page and “like” it and their website www.peachsneetfeet.com .  Madison Peach Stiener started this mission and has such a passion for these kids and what she does.  There are some great resources as you read through her page, and the most inspirting pictures that will lift your spririts as you see these kids and their beautiful, sweet smiles.

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Unexpected Admission, Again (sigh)

Sadly, the ER was calling our name last night, and today we sit in TCH, AGAIN, with no discharge in sight.  Yesterday we were in Clinic all day with platelet and blood transfusions so we could “juice up” for the weekend.  Jake looked great, in fact everyone was surprised that we were having to transfuse.  His color was good, he had energy, he was smiling and eating, but his platelets were 5, his hemoglobin was 7.1 and his ANC was a BIG fat ZERO.  So we transfused and at the end of the day, we happily left to prep for a weekend of Thanksgiving, Meghan’s birthday and Ryan’s birthday, plus Two Mom is here to visit… a full weekend of at-home stuff, including putting up the Christmas tree (which Jake has been so excited about).  Then he started getting warm, and a bit warmer, and a bit warmer, and HOT.  CRAP!  It’s pure anxiety as you watch the numbers, knowing there is nothing that you can do.  Jake’s body can’t fight fever, he has absolutely NO white blood cells and there is no way that we can get it down on our own.  Of course we tried anyway with lots of fluids, undressing him, making him flap his arms so he could air out his underarms – just in case – you ever know… and he thought this was funny.  It’s crazy, for a kid whose fever was going up, he was cooperative… but he knows he doesn’t want to be here unless he has too and he was doing what ever we asked with no questions, no complaints.  We must have taken his temp 100 times and with 4 different thermometers… wishing for just one of them to say something different.  Eventually we looked at each other knowing there was no option, fever means hospital.  I have to admit, I’m so disappointed… and sad… and pulling a big ‘ole “woe is me”.  We were so looking forward to this weekend and Jake has done SO WELL this round.  This just doesn’t make sense, he looks amazing compared to what neutrapenic fever looked like last time – and this makes 5 hospital stays in 7 weeks.  We have so much to be thankful for… I know this.  But spending Thanksgiving and the weekend here, away from everyone, away from our home, and our dinner, and our dinner table has me feeling weepy.  As they rolled Jake from the ER to his room in the early hours, he didn’t even open an eye.  He was wiped out, so when he woke up this morning and realized we were still here, there were tears, big crocodile tears and quiet sobs to go home.  My heart knows what he’s feeling.  The craziest part of this stay is that we aren’t even on our floor.  Our home away from home is the 9th Floor – Oncology.  Cancer patients are to be housed on the 9th Floor, no matter, but it’s sick season and the floor and hospital are FULL.  Our 9th Floor home with familiar nurses and playful hallway with special friends is full.  So we sit on the 14th Floor of West Tower – the Respiratory Floor… home of RSV and pneumonia and other respiratory illnesses.  This has us completely isolated, signs on the doors, docs and nurses entering in full cover and masks.  We truly appreciate their caution and care for Jake’s situation and can’t help but think that they too would prefer to be home.  It’s especially hard because he actually feels pretty good and could be riding the trikes rather than being cooped up if on the 9th Floor.  The worst part is that the playroom is right across from our door… we can see it through the glass window in our door, we can hear the kids.  Our energetic toddler wants out!  He wants to play too.  It’s scary, really.  This is NOT the floor for a neutrapenic cancer patient with no immune system.  Something like pneumonia can bring a multitude of horrible things for him and I’m afraid to even go to the family area where the ice machines and coffee are. There are kids and family members hanging out, some of the kids are coughing and they are in gowns so you know they are here for a reason – what if I bring something back into the room?   They too are nervous and are trying to get us moved.  Several different hospital reps have come in today to say they are working on getting him to the 9th. I am appreciative of their effort and constant communication.  Right now, we have markers that we have to check off in order for us to go home… 1. Eating Drinking, Peeing – check.  2. Fever free for 48 hours   3. Waiting on blood cultures to come back.  4. ANC (white cells) to recover.  (This should start rising anytime since we are 10 days out from lst chemo, but because he may be fighting something, it may be delayed.)  This stinks! Look how good he looks?!!  See… woe is me, woe is us!  What I should be doing is praying for these families who are here too and be thankful that we have a room and aren’t down in the very crowded ER.  I can’t seem to do that right now, I just want to go home, I just want to take my baby home, I want to spend time with my mom, eat Henry’s delicious Thanksgiving dinner, and decorate our Christmas tree.  So, I call on our sweet friends and family… you, our loving prayer warriors to pray for all these families who also would love to be home and are missing their families, their traditions, their visions of what should be.  Tomorrow will be better and we’ll be thankful, for deep down I do know there is so, so much to be thankful for.  But today I’m pulling a Scarlett for “tomorrow is another day”.