Sunday, January 30, 2011

Joey's counts were up enough to get his chemo on Wednesday.  He got another spinal and it was the "least worst" so far.  He wanted to be brave, so he didn't fight them this time.  When they were ready, he bit down on a foam ship that is supposed to be a stress reliever.  He said he bit down so hard, he thought his eyes might turn green like the Hulk.  He actually bit it hard enough to tear it, so it's now in 2 pieces.  Luckily, the spinal fluid came out easily this time, so it wasn't extra painful.  After the spinal, he got his bag for the 48-hr chemo (MTX).

Here is a picture of his pump and chemo bag that he carries in the backpack.  When the bag is full, it's really heavy for him to carry, especially on a back that's sore from the spinal.

On Thursday night, we had our first get-together with the Leukemia support group.  We ate pizza and bowled.  I was worried that Joey wouldn't be able to bowl since he had to carry his pack, but he still had a lot of fun.  It was good to meet some new families and hang out with others going through similar things.

Today, we took the kids ice skating.  I was amazed by how good Katherine was.  She has been 2 other times without me so I hadn't seen her do it until today.  She was trying to learn spins.  Joey was crazy - he wouldn't wait to see if he was stable on his feet before going.  Next time, I think I'll have him wear his bike helmet.

Joey loves cowboy stuff and dressed himself in his cowboy clothes this morning.  He pulled me out of my bedroom to show me his "cowboy pose".  It was so cute, I had him do it again for a picture.

He has finished one week of chemo and now has 3 more weeks in a row.  We go to have his counts checked on Tuesday to see if he can still get it this week.  It will just be a push - he won't have to carry it around with him.  He'll also go back on the steroids for 7 days.  This could be a rough month, so I'm praying for no side effects.

Monday, January 24, 2011


Joey hasn't been feeling very well - he's dealing with a cold.  He also has really low white counts right now.  I keep expecting them to go back up since it's been 3 weeks since his last treatment, but they keep going down.  He was supposed to get a spinal today, hydration, and start on his 48-hr chemo, but his counts are too low.  Dr. Rosen also wanted to have his cold checked out just to be sure it wasn't something worse.  They did a flu test and a chest x-ray but everything was clear.  They gave him an antibiotic just to be sure he doesn't end up with a sinus infection or something similar.

He'll go back to Dr. Rosen tomorrow for labs.  If his counts are better, he'll get his spinal on Wed and carry his chemo bag until Friday. If they are still too low, we'll just have to wait until next week and check them again.  It's not too unusual for a leukemia patient to have their treatments delayed from low counts, but it's the first time we've had to deal with it.  With his counts this low and all of the illnesses going around town, it makes me nervous.  We've been keeping him home from several things (like church and parties, etc) but he has still gone to preschool about half the time.  I don't want to completely lock him up at home.

Other stuff going on:
Katherine started selling Girl Scout cookies this weekend.  She set her goal at 200 cookies.  She's a little further than half-way there already, but she'll soon run out of people to ask.  It's fun watching her get into it, but I also know it's going to be a lot of work on my part once the cookies come in.

We found out one of my cats has diabetes.  I decided to try to treat him and see how it goes.  It's not as much work as I thought it would be but I need to find cheaper insulin than buying it from the vet.

Jon starts his new job next Tuesday (Feb 2).  We're excited for him to be working (he's going crazy at home and we need it financially), but it will also be another adjustment. He's been doing a really good job of taking care of Joey when needed during the week, so it will be more work for me to take the lead with him again and balancing that with my job.  I think the job is going to be a really good thing for him.

Thank you to everyone who has helped us out with meals and such.  It's such a big help!

Monday, January 10, 2011

He had his 48-hr chemo and spinal tap last week.  The spinal didn't go well.  He was ok until right up to the time and then he lost it.  He screamed and begged his dad to "get me out of this place".  They had to do it, so he had to be held down.  He alternates between letting them do it and fighting them.  Even though they had to fight him, the fluid came out easily this time, so it wasn't as painful as the last one.

He did really well on the chemo and was willing to carry the bag himself a bit more.  His appetite came back right before getting the treatment - it had been gone since the treatment 3 weeks ago.  I fully expected to start seeing side effects on Friday or Saturday. Last time he had the lip blisters, a skin rash, and wouldn't eat anything. It's now Monday, and we have seen no side effects this time.  He's still eating well and has no sores in or around his mouth.  He doesn't seem to be weak or tired.  It's been great, and I hope it continues this way.

Although he's feeling good, his counts are down.  They usually go up and then come back down a few days after chemo.  This last week, they were low even before the chemo.  He gets them checked again tomorrow, and I'm wondering if they'll be even lower.  We kept him away from crowds this weekend (no church and had to miss a birthday party), but he had fun playing with friends.

His new friend, Jesse, came over for dinner.  It's the first friend he has played with who also has leukemia.  They had fun, and Joey is already talking about when Jesse can come over again.  It was good for me to be able to talk to Jesse's mom and have someone who can relate to what we're experiencing.

Saturday, January 1, 2011


A good friend told me that God was pruning us this year, and I can't think of a better way to describe it.

This year (at least March - November) felt like a constant stream of attacks.  That's not to say that there was nothing good - there were still a lot of good things, but the bad has a tendency to outweigh the good in our memories (at least in mine).

We faced some of our biggest fears head-on:
For me, it was cancer.  Especially since having kids, I've had a very strong (probably unhealthy) fear of cancer.  The fact that it strikes without warning and is hard to control is terrifying to me.  I don't think I can express how devastating it felt to find out that it had attacked my child.

For Jon, it was the loss of his job.  This isn't to say that he wasn't equally terrified at Joey's sickness, but he had to face his great fear of failing in his career.

Through my experiences and listening to others, I've come to realize that sometimes we are forced to face our biggest fears because it's the only thing that will lead us to trust God fully.  I never really understood what it means to "trust God".  People say it all the time, but it's hard to understand what it actually means to our daily lives.  I certainly feel like I understand it better now.  Being in the dark places that I've been have opened my eyes more to what it means to trust Him.  I would have never understood it without the trials of this year.  I don't mean to say that I've got it all figured out (far from it), but I'm a lot closer now than before.

In in addition to the growth I feel I've had, it has been amazing to see how people have reacted.  We honestly would not be sane right now if it weren't for the people around us.  The financial help (via fundraisers, etc) has successfully gotten us through with Jon not working and all the medical bills are paid.  We've had people clean our house while we were in the hospital, had a loaner car while Jon was without a vehicle, and had meals brought to us.  There were also many people who helped by taking Katherine while we were in the hospital so she could actually have some fun, and friends who pitched in to make sure she had a good birthday party.  I could go on and on with good deeds that helped us out tremendously.  Thank you!

The tail end of the year has brought us good news (which I shared in an earlier post), so I feel like we are facing those fears and winning the battles.  2011 will not be an easy year, but I hope it will be one with few surprises.

Happy New Year!