Saturday, December 31, 2011

I wanted to add pictures from Christmas but I'm having some technical difficulties, so I'll have to post them later.

Joey has been sick the last couple of weeks and we narrowly missed being in the hospital during Christmas.  However, we got to stay home and we all had a great weekend!

On the 12th, his cough was worse, so I took him to Immediate Care and found out that he had a sinus infection. He started on an antibiotic, on top of the one he takes regularly while he's on chemo.  That next weekend, we went to Branson and spent a day at Silver Dollar City (I'll post pics later).  We had a great time.

After we got home, I noticed that his breathing wasn't quite right.  I called his asthma doctor Wed morning (the 21st) and she wanted to see him right away.  She confirmed he was wheezing and his breathing tests showed a slight problem.  She decided to do a chest x-ray just to be safe and we discovered he had pneumonia.  The doctor was surprised since he was already on 2 antibiotics.  We also discovered that his immune system was very low (ANC was 300, compared to a normal range of 2,000-5,000). So he started on a 3rd antibiotic, more breathing treatments, etc.  He was on a total of 11 different medicines overall.  Dr. Rosen let us stay home as long as he didn't get a fever and I gave him an update twice each day. On Friday (the 23rd), I took him in to check his counts again and ran into his pediatrician who wanted to take a look at him.  His wheezing was a little worse, so we had to wait there for his counts to see if he was going to go home or to the hospital.  I got a little nervous, but, luckily, his counts had gone up and we were allowed to go home (with 1 more medicine added).

Christmas was great. We had family gatherings on Friday, Saturday, and Sunday. Grandma spoiled the kids as usual.

I got to be home all week, so the kids have done a lot of relaxing. I spent Mon -Thur working on the house.  All of the Christmas stuff is put away until next year, the presents are all put away, the laundry is done and the house is clean.  It will actually stay clean all weekend, but only because we're now at the lake house. I hate going back to work after a break with housework left undone, so I wanted everything completed before we left town.

On Thursday, we had a follow-up appointment with Joey's allergy/asthma doctor.  His breathing tests were better but she still heard wheezing, so we are going to start him on another antibiotic just to be safe.

By the way... this is the same allergy doctor who discovered Joey's leukemia. During the appointment on the 21st, we were in the same exam room that we were in that day.  It was strange being in the same room again - she even noticed it and almost moved us. We talked a bit about how great it is to be in the room again but with Joey doing so well now.

Each of the 3 appointments we've had over the last week were about 2 hours each, along with 2 labs to check his counts and several phone calls and trips to the pharmacy.  It gets really tiring, but I'm very thankful that Joey has many doctors looking out for him and taking care of him.

On top of all the breathing issues, he had chemo this last week.  If you add up all of the meds together, he took 12 different medications over the last week. I went to the pharmacy (I'm there at least once each week now), and I had 6 to pick up for Joey.  The woman there said "He's on 2 antibiotics?" I said "He's actually on 3 right now" and she looked at me like I was crazy.

Through-out all of it, Joey hasn't really felt bad. I could tell some times he has been tired, but not much more than that.  It amazes me that his body can be sick and we'll pump him fill of medicines, but he's still running around like a normal 6-yr-old boy.

Sunday, December 11, 2011

Well, we're almost done with what is usually a difficult week and, so far, it hasn't been as bad as it normally is. The steroid meltdowns have been minimal and we haven't seen too much muscle weakness.

He has had a tummy ache off and on, but nothing that hasn't been helped by some Benadryl and rest. He's been a little tired at school and hasn't always gone to gym class, but he has been able to stay awake. On Thursday night, the bone pain was pretty intense.  He had a lot of jaw pain and said he hurt all over. For the hour before he fell asleep, he cried from the pain.  Since he didn't have a fever, I gave him some Tylenol and he finally fell asleep.  On Friday morning, he was still moving slowly and said he didn't feel well.  Luckily, my mom has been able to have most Fridays off for the last year, so she's able to help us out more when he's sick. He spent the day hanging out on her sofa and watching movies.

For about the last 6 weeks, he's had a nasty cough which is worse in the mornings and at night.  I check his oxygen level often and have increased his asthma meds but it just won't go away.  His O2 is usually good, but it has gotten a little bit low a couple of times this week.  Yesterday (Saturday), he and Katherine we playing and running around the basement.  He was coughing almost non-stop and was breathing really hard.  I checked his O2 and it never read higher than 94%.  I gave him is inhaler and made him rest for a little while. The steroids should be helping him and he takes an antibiotic every weekend, so I don't think he's at too much risk for lung issues, but I'm keeping an eye on it.

We had several fun things this week including riding the Party Bus and looking at Christmas lights, having cookies with the Man/Woman of the Year candidates, and going to a Christmas party with our Bible Study friends. We're so thankful that he was able to enjoy all of the fun things even after having the strong treatments this week.

Monday, December 5, 2011

Over the last 2 weeks or so, Joey has had more energy than I'm used to him having.  I actually asked his oncologist if the new medicine he just started can make kids hyper (you just never know) and he sort of laughed.  I'm wondering if Joey is just now starting to feel more like himself and the true ornery boy he is, is coming back out.

We're in the second week of 3 weeks of chemo.  Last week, he had the energy I mentioned above except for one day.  On Wednesday, he fell asleep at school at about 10am.  At 11:45, when it was time for more chemo and to get on the bus, they couldn't get him to wake up.  I think he really worried them.  After about 20 minutes, he finally woke up.  Dr. Rosen said it can be normal if they are really tired and you wake them up during just the right stage of sleep.

Today, we saw Dr. Rosen and had a spinal and port access for labs and Vincristine (the stronger chemo). While we were with Dr. Rosen and Kim (Mrs. Rosen and the nurse), he talked to them more then I've ever heard him talk to them before.  When Kim dropped off the vials of stuff that was going to be pushed through his port, he yelled "Am I getting all of that?!"  The spinal went smoothly. Once again, he didn't cry, but he did bite a chunk out of his squeezy boat.  We may run out of boats again if he keeps biting them that hard, but it's amazing how well it helps him get through it. He felt unusually well after the appointment.  He rested for about 2 hours and then the high energy was back.

Tonight, we had our December meeting with the Leukemia & Lymphoma Society support group.  We all boarded the Party Bus and drove around to look at Christmas lights.  It was a lot of fun - Joey spent most of the time bouncing around the bus.