Joey made it through 4 straight weeks of chemo with no severe side effects.  He has gotten tired and had some muscle weakness but has managed ok.  His counts have been low and his immune system is extremely low, so it's surprising that he hasn't gotten sick.  We're SO fortunate that he has had no infections.  

We attended a Thunder hockey game that honored cancer patients.  We went on the ice in a survivor circle and Joey and 2 of his friends (who also have leukemia) got to meet the team.  He wore orange for leukemia.  

Katherine had her school music program last week.  It was Disney-themed, so they all dressed like Disney characters.  Katherine was Gabriella from HSM. 

For our peer support group this month, the kids got to paint.  Their paintings will be used to create a book and the originals will be auctioned to raise money for the Leukemia Society via a Man of the Year candidate.  Katherine got to paint too, but she got to bring her painting home.

We braved the elements again today to go to the doctor for another dose of Vincristine.  A 5-min push of meds turned into 2 1/2 hours, but we made it.  I worked from home today and it was just me and Joey.  After lunch, I thought it was very quiet in the house, so I came out of my office to see what he was doing.  His bedroom door was closed.  I peaked in to see him asleep under his covers.  The poor guy had crawled into bed all on his own.  I could tell even before that, that he was getting tired.  It's not the kind of tired like when it's bedtime - it's the kind where you know all of his muscles are tired. 

Here is a picture of him with his new friend, Jesse, who also has leukemia.  We met Jesse and his mom in the hospital. 

He was given 2 Lego sets by people that work with me at Hawker.  He loves these things!  He wanted to pose with them - I did not make him do it.

 

Running for Joey

Several years ago, we made some new friends through our weekly Bible Study (Desta & Brian).  After getting to know them, they moved on to Atlanta.  We've been able to keep in contact with them over the years through blogs and Facebook.  When Joey got sick, Desta really wanted to do something to help.  She had become a runner so she decided to dedicate a marathon to Joey and raise funds in his honor for Make-a-Wish Kansas.  Since then, she has run several more races and has met her fund-raising goal.

Please read this web article about her story - it's great!

Joey stayed home a couple of days this week because of the snow storm.  However, we did brave the wind to go to the doctor on Tuesday to have his counts checked.  They were OK, so we went back on Wed for his Vincristine (VCR).  He is also on steroids again this week.  A week isn't long enough to cause too many problems, so we're thankful it's no longer than that.  So far, he's a little more tired than usual and his eating habits are strange, but he's doing well overall.

Jon was supposed to start his new job on Tuesday of last week, but it was pushed until Thursday due to the weather.  Those 2 days were hard on him, but he was SO happy to finally start.  It's hard to tell how a place will be after only 2 days on the job, but it's really good so far.  He seems like a new person now that he's out of the house again.

Both kids had been begging us to take them to Tae Kwon Do classes, so we found one close and went on Thursday night.  We thought it would be fun for all 4 of us to do together.  Also - Joey won't be able to play soccer this year and I thought martial arts would be perfect for him.  Katherine got right into it and loved it, but Joey shut down as soon as we walked into the room.  He held onto me the whole hour.  So, Jon and Katherine are going to keep doing it and we'll wait for Joey to get comfortable.

Through the wonders of the internet, we've been making lots of new friends.  One more found us last week (though a reference from another new friend).  She is an artist and asked if she could sell a print in honor of Joey.  Please visit her Etsy page and/or her blog.

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.

Delay

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!

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.