We made it through the chemo this week.  Joey was really proud of himself for learning to take all 7 pills with no drink.  He was up coughing late on Tuesday night, so he was still awake at midnight and didn't have to be woken up to take them.  The chemo doesn't seem to be bothering him.  His biggest problem is his allergies that won't quit.  

Here are more pictures of the fun stuff we've been doing.

Joey got to box with his daddy

We celebrated Jon's birthday by taking a trip to the Kansas Cosmosphere.  All of the kids loved it. 

 

 He wanted to pretend to hold it up. 

Sorry I haven't posted for a little while.  I've got some pictures that I'll post later of the fun stuff we've been doing the last few weeks.

Joey has felt ok, but he's got a cough that just won't go away.  He's even been coughing so hard that he gets sick.  We've been working with his asthma and allergy doctor to try to get a handle on it and it seems better today.  I think it's caused from all his allergies.  We had him tested a couple of years ago and found that he's allergic to all kinds of pollen, which has been very high around here lately.  If he's not better in a couple of days, they'll add a steroid to his ever-growing list of medicines.

The good news is that his counts were up yesterday.  Because they are high enough, he started chemo at 6:00 tonight.  He'll take 7 pills every 6 hours.  He's also taking his inhaler every 4 hours right now.  The poor kid gets woken up a lot some nights.  His chemo pills are pretty small, and he was very proud of himself tonight when he realized he can swallow them without a drink.  I've been rewarding him each time with candy - probably not the best reward, but it helps get him to cooperate.

When I first started using the web to interact with other families dealing with leukemia, I connected with a handful through our Joseph's Journey Facebook page.  I knew I was taking a chance of making all of this harder on myself - instead of worrying about just Joey, I would worry about other kids fighting the same fight.  I just couldn't keep myself from getting emotionally involved with some of them.  I'm very sad to say that one little girl (in Australia) passed away this last Sunday.  She was 4 when diagnosed and had since turned 5.  She was diagnosed about 3 weeks after Joey. She made it to remission, but a month later, the cancer was back and the doctors knew it was too strong to fight it any longer.  Her mom posted on Joey's page about how she held her baby as she slipped away.  Joey has been doing so well that I sometimes forget how deadly this can be.  This was a difficult reminder of what we are dealing with and how fortunate we are that Joey's treatments are working.

Joey is feeling much better now that his sinus infection is gone. At his appointment with Dr Rosen this week, we got the details on the new treatment course that he starts in 2 weeks.  He will now get fewer spinals and he won't have to carry the bag around for 48 hours anymore.  He'll be getting the same type of chemo but in pill form.  Every other week he'll take 6-8 pills every 4 hours for 24 hours.  This means we'll have to wake him up for some of the doses.  He'll also get another medicine the day after - 2 doses, 12 hours apart.  

I assumed this would be easier for him, but the doctor said that the chemo in pill form is usually harder on the body than the fluid because it stays in the body longer and has more time to be toxic.  I'm hoping he gets through this as well as he did the last 5 months.  

We are spending this weekend at my parents lake house on Table Rock.  We got to spend some time with my cousins family.  They live in Minnesota and we don't get to see them much, so it was really good.  Joey and Cody got along and had fun playing together.

Here are some pictures of some fun things we've been doing:

Jon and I ready for a night out

 Bowling with the family for Mom/Grandma's birthday

 

Joey and Brea (Daughter of my cousin, Jeremy)

All the kids at the lake house

Cody, Katherine, Brea & Joey

We had a little photo-shoot down by the water 

 

 

Friday morning, I took Joey to the doctor.  They did a few tests, including a sinus x-ray that showed infection in 2 sinuses.  I was actually relieved.  A couple of days on antibiotics and he's fine.

We go in for labs tomorrow, but he has no major treatments this week!

We've had a little bit of a rough time lately.  Joey was sick last week with some sort of virus (one of the many going around).  His counts were low, but he managed to fight it off pretty well.  He used up 4 boxes of tissues in the first few days and his poor little nose was sore.  I was stressed through it all because I didn't know if it was going to get worse.  I didn't want to take him to a doctor and be exposed to more germs, so we bought an oxygen saturation monitor.  As long has his O2 was good, and he didn't get a high fever, I was comfortable with letting him ride through it without a doctor.

After Joey got sick, Katherine got an instant sore throat.  I knew immediately that it was strep again, so I took her right into Immediate Care for a test, which was positive.  So I worked from home and made Joey stay upstairs and Katherine stay downstairs so they wouldn't expose each other to more bugs.

This week, Joey had a spinal and brought home the chemo bag for 2 days again.  This time, they give him a small backpack on wheels, which he loved.  He always hates carrying them on his back that is sore from the spinal. This was his LAST time to have the 48-hr MTX and have to carry that bag around.  I asked him how he felt about it and he said "excited!"

This morning we dropped off the bag for the last time and went out to lunch before he went back to preschool.  He didn't eat anything and said he was cold.  I thought it was strange that he was cold but didn't think that much about it.  By late afternoon, he had a fever.  It got to 102.9 when Jon gave him some Tylenol and then it slowly went down after that.  He ran around the house all night and said he felt fine.  It's very strange.  I'll be taking him to a doctor in the morning.  My guess is that he has a sinus infection from the stuffy nose he had last week.  His counts were pretty good before the chemo, but I don't know what they are now.

I can't wait for summer!!

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.