Six-year-old Jacob was diagnosed with acute lymphoblastic leukemia (ALL) in October of 2011. This blog is his journey, and ours, through treatment and recovery. It is also a place to celebrate successes, count our blessings and give thanks to God and to our many wonderful friends and family.
Yesterday was a big day: Jacob got to go back to kindergarten! He was so excited.
His teacher and his class were so great; they made him a “welcome back” sign and a book, they had treats and made a big deal out of his return. He felt so special.
Best buddies
People keep asking me, “How’s Jacob?” And it is so fun for me to say, “Things are going really well!”
This phase of chemo (called Delayed Intensification) is suppose to be, well, intense but Jacob seems to be doing really well. The major side-effect is tiredness, but even that isn’t very bad. We were sort of prepping for the worst a few weeks ago and I’m so happy to report that it hasn’t been bad at all.
Jacob pushing his own syringe of saline into his port 3/1/12
He is losing his hair again, as you can see. It had started to grow back, and was actually kind of long, albeit thin—we referred to it as his ‘Yoda hair’ (see any number of previous posts on Jacob’s interest in Star Wars). The Yoda-hair is all but gone now, coming out in clumps and patches where he rubbed up against his pillow.
Jacob is feeling fine though and we mostly hang out (watching too much TV) as we wait for his counts to climb back up. This Sunday (March 11th) he takes his last chemo pill for this phase. Then it’s two weeks of recovery time and on to the next, much-anticipated phase called Maintenance. We are told that in that phase things become a lot more “normal” for us.
Mom, Isaac and Jacob watching Disney’s cartoon Robin Hood (a classic, right?)
Watch What's Causing a Shortage of Pediatric Cancer Drugs? on PBS. See more from PBS NewsHour.
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.
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
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.
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.
