Night Owl Turned Craft Bug

 

Since Jacob’s steroid med’s keep him up at night, he’s kept himself busy making marvelous paper creations which he has given as gifts to other family members. I guess he figures he can’t get in trouble for being up late if he’s making a tender, home-made gift for his mom. And he’s absolutely right!

So far he has presented Isaac with a special, home-made bookmark; Scott with a drawing of Yoda; and for me he traced his hand and wrote, “I love you, Mom.”

All of this was done two to three hours past his normal bedtime.

Sleepy Head

Look familiar? It feels familiar. It feels like October again. OK, it doesn’t feel quite that bad. But there are some similarities—in a lesser degree, thank heavens!

He’s not as cranky lately (oh, hooray!) but he’s certainly still hungry. This morning’s breakfast included pancakes, a corn-dog and Thai-style-ramen-noodles (pictured above). He did not finish the noodles before he nodded off, but once awake again he was ready for a quesadilla. It’s hilarious to see him eat this much.

Jacob’s last dose of steroids was Sunday, so we expect the hunger to die down in a day or two. He’s got round little cheeks and a poochy little belly again. The medicines make it tough to sleep at night, so he tends to doze during the day. And chemotherapy can also cause sensitive skin which has lead to a rash on his arm and between his fingers.  We had checked out at his last clinic visit and they gave us a prescription cream to help treat it.

There’s so many changes, so much up and down. So many medications and so many side effects. Sunday Jacob said to Scott, “I’m glad that I don’t know any other kids with cancer—it’s no fun,” and then he looked at Scott and said, “you wouldn’t like it.”

Just tonight he started having some back pain. He’s had stomach aches all week, but the steroids make his muscles kind of weak and he didn’t want anyone to hug him at bedtime. But like I said, he’s much more good natured of late and not as temperamental, so that’s good.  

Snugglin’ in bed late one evening

French fries at clinic, Feb. 13th

Steroids in Full Force

Tired. Hungry. Cranky.

Tired. Hungry. Cranky.

That pretty much sums up how Jacob's feeling right now. He just feels yucky. And tired. And hungry. And cranky.

I’m hoping that it won’t last long. He finishes taking the steroids on Sunday, but we have learned that the effects can remain for days. 

Make A Wish

Saturday was the beginning of something pretty special for our family. It was the day that we went to the Make A Wish Foundation. This awesome organization grants wishes for children who have a life-threatening condition, and we’re so excited and grateful to have a wish granted for Jacob. (And, by the way, it’s great to have something so fun to put on the blog—it helps to break up all those boring clinic visit posts!)

Excitement face.

Last weekend Jacob went to “declare his wish” and meet his wish granters. They are two volunteers who coordinate his wish and help make it come true.  Our family and Jacob’s grandparents were invited to come to the special Wishing Place where Jacob could decide what to wish for. And we were so excited to go!  We all have been looking forward to this for weeks (believe me when I say all. I have been just as excited as the kids!)  It is so nice to have something to look forward to.

Isaac and Jacob by the door of the Wishing Room. Jacob’s wish is written inside the gold cylinder.

Our family inside the Wishing Room where Jacob placed his wish.

It’s difficult to describe how special it is be involved with this foundation and to have Jacob make a wish. We have actually been to the Wishing Place once before when Jacob’s cousin was granted a wish several years ago. Jacob was one-year-old at the time. Of course, we never thought we’d be back with our boy as the Wish Kid (as they’re called).  Nonetheless, it is a sweet and wonderful experience.

Wondering what Jacob wished for?

In anticipation of this event we tried to prep Jacob. Not coax him (I didn’t say coax him) but prepare him a little—let him know the possibilities. We tried to get him to imagine what he would want if he could have anything in the world, or if he could go anywhere, or do anything.

He just wants Star Wars Legos.

“But Jacob,” we’d say, “you could go anywhere or have anything.” 

Nope, just wants Star Wars Legos.

I tried to explain Disney World to him, I showed him pictures and videos on the internet. Yeah, he’d like to go there, he says, that would be fun, but when asked what his deepest, heart-felt desire is: Star Wars Legos. Oh, he makes me laugh.

Alright, give the boy some more Legos.

And maybe we’ll also go to Disney World and fight Darth Vader? Who knows? We’ll see :)

The ceiling of the Wishing Place with a star for each Wish Kid.

So Far, So Good

Today is Day 11 of Delayed Intensification, Jacob’s fourth phase of chemo. And, so far it really hasn’t been that bad. Things have been pretty, well, normal. Jacob is feeling fine with only a little bit of nausea the day after treatment. This is certainly easier than I had anticipated. Of course, I realize we’re only eleven days into a 57 day phase, but—still—it’s been a great week and a half and I’m very grateful. Everyone’s healthy, happy and playing as usual.

The boys “flying” in a toy tool-bench turned Star Fighter.

We’ve had two more clinic visits since last we posted. One on Thursday, February 2nd and the other on Monday the 6th. Both were just fine.

Here we are at clinic on Feb. 2 getting ready to watch Star Wars. Check out Jacob’s eyes, see the excitement? This movie is a special treat.

Thursday’s visit was for a medication called “Peg,” short for peg-a-something-or-other (I’m done looking up the long names for everything). Sometimes people have an allergic reaction to Peg, so we had to stay at clinic for a few hours so the docs could keep an eye on Jacob. No reaction. But there was a moment of concern when his eyes became red and sort of puffy. With no other symptoms however, the culprit was likely just the TV.

Monday’s visit was fine too. We were in and out of clinic in record time—less than an hour and a half (that’s really quick compared to Thursday’s almost-five-hours). His number’s are still high; his ANC (infection fighting ability) is 2.9 (or 2,900) but we do expect it to get to zero sometime during this phase. I think the lowest he’s ever been is .5 (or 500).

Jacob had another round of steroids that just ended too. He was only on them for a week this time. His appetite increased, but I wouldn’t say he was as ravenous as last time. I think it’s still in his system a bit though.  Today he was asking me if we had “any meat” in the house. I made chicken for dinner and he had four helpings.

We’re so glad this phase has not been too hard (yet?), Scott said to me today, “Delayed Intensification really hasn’t been that intense.”

I feel the need to not just knock, but pound on wood right now (superstitious or not).

Hopefully things continue to be pretty easy. We’re told that when his ANC gets to zero he’s quite likely to get an infection and a fever, but for now we’re enjoying the non-infected, non-fever, feeling-good, star-ship flying Jacob.

Phase 4: Seriously Stepping Up the Chemo Intensity

The last two months have been surprisingly recuperative, both for Jacob and for Sara and I. Because Jacob has been on a lighter dosage of chemo with very little side effects life almost reverted to pre-cancer normal. He had more energy. He laughed and ran and jumped and climbed and colored and teased. Just like the good old days. He even grew a few thin strands of hair and lost his steroid-chubbiness as he shrank back to his skinny little self. We have been cautiously grateful during this short refreshing season and have often referred to it as the "eye of the chemo storm." But even through this respite we have kept an anxious eye on the horizon as we have been warned about the dark and ominous clouds which have been steadily approaching.

This looming storm, which has just begun for us, is called "Phase 4: Delayed Intensification" (sounds like code for "really long and really difficult"). The doctors tell us that this phase is where they really step up the chemo in order to hit the cancer mega-hard one last time before Jacob enters into the final, and much more pleasant phase called "maintenance" where things will be more akin to what we have experienced for the last two months.

What can we expect during this intense phase? Quite a bit of, well, intensity. We just began this phase on Monday, and the doctors explained that what they are doing for the next two months is knocking Jacob's immune system down to 0. That's right: nothing. Nadda. Zilch. They told us that because of his vulnerability during this time, if he were to get an infection it could be "life-threatening." We didn't like those words very much. They said that in addition to being susceptible to everything, he will most likely become sick because of infection caused by his own body's bacteria (the normally "healthy" bacteria we all have, but with no immunity there is no natural barrier to keep it from hurting him). The doctors said that he will likely be "down and out" for 2-3 weeks of the next two months, that he will likely need to go to the ER multiple times during this phase, that he may need several blood transfusions, and that he may be admitted a time or two as in-patient in the hospital so that he can be closely monitored. I would agree that "intense" is an apt word for this phase.

"Bracing for impact" is a good way to describe our posture right now as this phase begins. As in a lot of things, the anticipation may be worse than the reality. We're trying not to think too much about what could happen while, at the same time, being ready to respond to whatever actually does happen. We're packing a bag and keeping the car running, so to speak, as we anticipate what this all might entail in terms of late nights and hospital stays. We just want to be ready to help Jacob in whatever ways we can as he pushes through this final uphill leg of his journey to be cancer-free.

On a personal note, if we seem somewhat anti-social for the next two months or so, please be assured that it's not you, it's just the inconvenient-to-you-but-life-threatening-to-Jacob germs that you might be carrying. No offense :)

We continue to be grateful for the many warm wishes, phone calls, and petitions to heaven in our behalf. And, from the way it sounds, we will need all of that more in these next two months than ever. God bless you all for your concern, care and comfort.

Let phase 4 begin.