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.

Friday, November 25, 2011

Photo Card

Pictures Galore Christmas
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Saturday, November 19, 2011

Leo 2000-2011

Eleven years ago, we added a cat to our family, named Leo.  He and our other cat, Ollie, have been best friends ever since. Over the last few months, I've noticed something not quite right with him, and one day, I saw him have a seizure.  I then realized that he'd probably been having them for a few months.  We took him to the vet to have him evaluated to see if she agreed that he had epilepsy. Before we went, we told the kids that he may not be coming home.  They were upset (especially Katherine), but they understood and said their goodbyes.  The vet confirmed the epilepsy and said that we could try to treat it. It was a really hard decision to make, but I knew I couldn't take on the care of another sick creature. I'm barely keeping my head above water now with a stressful job and Joey's care, not to mention all the other normal things that come with being a wife and mother. I've never made the decision to put an animal down before and it was not easy.

Friday, November 18, 2011

Port Access

Joey saw Dr. Rosen this week. When he had his Hickman, we went there every week to have blood drawn for labs.  Now, we do 3 weeks of labs at our primary doctor's office and only see Dr. Rosen every 4 weeks.  It has been an adjustment for me to not see him more often. Joey has been doing really well since his last surgery, so it's ok, but it was a change for me.

His checkup was great. This weekend he'll be starting a new medicine that he'll take for the rest of treatment and a little while after. It will probably be the summer of 2013 before he stops taking it. I'm hoping there are no side effects, but I think the risk of that is pretty low. 

The goal of the current treatment is to push down his white blood cells enough to keep them from spitting out bad cells but high enough that we don't cause other issues (infections, etc).  The best range for his WBC is 2.5-3.5K.  Joey's has been staying right around 3.0, so it's just perfect.  He is one of those kids whose body reacts well to the treatment.  He does have about 1 day a week that he doesn't feel well.  Last week, he had one night when he woke up vomiting and then had a low fever the next day, but then felt better by that night. He didn't feel well yesterday and rested through most of school again, but it didn't last too long. 

Here is a picture of the his port being accessed.  It's a bent needle that is pushed through the skin and into the hard plastic port.  It doesn't slide in gracefully; it has to be forced, but they are fast so it's not too bad. It looks really strange, though.  The red line is the scar from the surgery - it will remain with him forever (but may lighten) to remind him of this phase of his life.  He held on tight to his little penguin for support. 

Saturday, November 12, 2011

Halloween 2011

Just like every year, we took the kids to the Night of the Living Zoo. It's fun to be in zoo in the dark and they changed it up a little bit this year. The weather was great - not too cold.

 Joey was Davey Crocket this year.  We've been to the Alamo twice and he took a liking to Davey.  The second time we went was last summer and he begged for this vest to go along with the hat he already had.

At Grandma's house before the zoo.

I took the day off on Halloween so I could go to all the kids' parties.

Joey's kindergarten class party

Katherine walking in the school parade

Trick - or -treating on Halloween night.  The weather was so nice that we stayed out longer than we ever have before.  They got WAY too much candy.

Sunday, November 6, 2011

Joey Turns 6

Joey turned 6 on Oct 20.  It really felt like another milestone for him.  He's come so far from where he was when he turned 5. He was in so much pain and still really battling the cancer on his 5th birthday.  This year, he was able to have a ton of fun bowling with his family and friends.  Even though times are still not as easy as we'd like them to be, he's doing so well.

Here he was on his 5th birthday:

And here on his 6th:

God is good!!

Light the Night

On Oct 15th, was the Light the Night Walk, where Joey was the honored hero.  We had a team of about 90 people and we raised almost $9,500 for the Leukemia & Lymphoma Society.  Our goal was $5,000, so I was very impressed with what we did.  We even won the award for the most raised by a friends and family team. The weather was great and the entire night went smoothly.

Katherine Turns 9

Katherine's 9th birthday was Oct 16. We had her party on the 15th at Color Me Mine where all the kids picked a ceramic to paint.

Corn Maze

The day after Joey's port surgery, he wanted to go to the Camp Quality Reunion at the pumpkin patch.  We spent most of our time in the corn maze.  

Friday, October 7, 2011

Surgery #4

Joey had his port put in today. It's a pretty minor surgery, but it still involves general anesthesia. It was scheduled for 3:30 but the surgeon was ahead of schedule so they asked us to come in early.  We got to the hospital at about noon.  He spent some time in the prep room and went into the OR around 1:30.  It took about an hour and he then went into recovery.  At about 3:30, we got to see him.  We was awake but in a lot of pain.  They gave him a 3rd pain medication but he aspirated some of it and choked for a while. I felt bad for him b/c he was already in pain and then choking and coughing on top of that.  After about 30 min, the medicine finally kicked in, he was more comfortable, and asked to go home.  We left for home about 5:00.

He's been doing ok while at home.  He was hungry, so we got him what he requested: Sonic. After just a few bites, his tummy got upset so he didn't eat much.  A little while after that, he was crying from the tummy ache.  We got him some Sprite and Benadryl, and he eventually felt better. He's still sore but I gave him more pain medication right before bed and I'll get up and give him more at 3:30am.

 Looking at a port with Melissa, the Child Life Specialist

 The "before" picture

 Just waiting and playing DS

 Decorating his mask

 After surgery and in some pain

The "after" picture

Tuesday, October 4, 2011

Light the Night

Joey and I were on live TV yesterday to talk about the Light the Night Walk (an LLS fundraiser).  It's really fun having Joey as the Honored Hero for the walk.  We have a large team and a high goal, but we're falling short of our goal.  If you feel led to make a donation and help us reach our goal, please use this link to do so.  Thank you!

Another Surgery Scheduled

Joey will be going into surgery again on Friday to have a port placed in his chest.  Please pray that he'll have a fast recovery with very little pain.

Saturday, September 24, 2011

Our First Year with Leukemia

We all have days in our lives that re-route our paths. These days stand out more than others, and we remember the minute details. Sept 23, 2010 was one of those crazy, disorienting days for me. I remember the feelings and the looks from the doctors. I remember exactly how it sounded to hear "the labs do indicate leukemia", "we are very concerned", "we need to make sure there are no tumors", and "he is in critical need of a blood transfusion". We had no idea what the tests were going to show and, for that day, we really thought we might lose our baby boy. It wasn't long, though, before the tests came back and we were told that he has a very curable form of cancer. It was a relief that I can't explain. At that point, it didn't matter how long or hard the treatments would be. The point was that there WAS a treatment and that he would almost certainly be healed, eventually.

The fall continued to be a whirlwind. He was in pain almost constantly for about 6 weeks. Four of those weeks were spent in the hospital (5 days in the PICU). We celebrated his 5th birthday in the hospital. He had many problems with his stomach and would scream in pain over and over... it was an ear-piercing scream. One night, just when I thought I couldn't listen to him scream or see him cry anymore, it stopped after he said "only God can help me now", and we had one night without pain. Through this, we got the great news that he was in remission (as was the goal in that time-period).

Slowly, many of the pains subsided, he lost his steroid weight, and began to return to normal. We got used to our new routines of weekly doctor visits, nightly meds and Hickman dressing changings, and regular chemo. He had several-week blocks of feeling good and almost totally normal. Some days and weeks are harder than others, but, overall he's doing well. Most importantly, the cancer has responded to the treatments and has been kept away. Also, his blood counts usually stay up high enough that he doesn't get dangerously ill.

We are not the same family we were a year ago. We aren't done with all the trials yet, and things still get difficult and stressful, but we're surviving. There is no way to explain how much everyone's support has helped us. I feel guilty sometimes because I didn't do a good job of thanking many of the people for what they have done, especially early on and when Jon lost his job.

Through it all, God as been with us. I could almost physically feel Him holding me up during those first few days. This is all part of our journey and is contributing to who He intends for us to be, especially Joey.

Thank you all for the moral and financial support, for the prayers, for the love, and for the practical help we've been given.

Here is a summary of Joey's "stats" for his first year of treatment:
4 hospital admissions
3 ER visits
70 Visits to Dr Rosen (roughly)
3 Surgeries (Hickman)
2 bone marrow aspirations
10 spinal taps
6 blood transfusions
1 platelet transfusion
7 chest x-rays
2 CT scans
70 CBC's
3 EKG's
2 Electrocardiograms
56 days of steroids
32 rounds of chemo drugs (different types, including 364 MTX pills)
3 sinus infections
2 Hickman infections
5 Rounds of antibiotics

Sunday, September 18, 2011

Surgery #3

The surgery to remove his central line was quick and simple. After we got home, I took the opportunity to snuggle with him and just hang out for the rest of the day.  He and I really needed it.

He wasn't feeling super great today, but he still managed to have some fun.  I'm hoping he is even better tomorrow and is ready to go to school on Monday.  Monday night, we go in for a finger poke to get his weekly CBC to make sure his counts are high enough for chemo on Tuesday.  It will be interesting to see how he does with it.  It may help us make the decision on whether or not to put in a new central line.

 In the ER late Monday night

After his spinal on Tuesday

Central Line (Hickman)

 Surgery Prep - Decorated his mask

 He stared to get nervous, so he played a game to distract him

 Going home after it was done - he was pretty groggy

Thursday, September 15, 2011

Rough Week for Joey

On Sunday, Joey fell asleep during church and woke up with a low fever.  He slept more in the afternoon and woke up with 101.6, so Dr Rosen told me to take him in to get checked out. We spent the evening in the ER having the normal checks done.  Nothing showed up that night and his counts were high enough, so they sent us home.

I kept him home from school on Monday to get some rest. On Monday night, at 11pm, the ER called us and told us to bring him back there right away.  They informed me that some bacteria had grown in the blood culture they took through his line.  They checked him to make sure he was doing ok and gave him the first dose of high-powered antibiotic through his line.

Tuesday morning, he didn't go to school and he slept until 11:30. That afternoon, he had his treatments that had already been scheduled.  He had a spinal, Vincristine (strong chemo) and started on his steroids for the week. They also gave him another dose of antibiotic. I had to try not to think about everything going on at the same time - it's a lot for his little body to handle.

Wednesday he had a good day at school and got another check-up and antibiotic dose. He had his first major steroid meltdown that evening...he cried and cried.

Today (Thursday), he went to school, but then fell asleep. When he woke up, he was crying for me and saying he didn't feel well, so I came and picked him up. Later, we went in for another antibiotic dose and found out that he needs to have his line removed.  The bacteria there now is the same kind that was there last month, so they think it's the same incidence.

Tomorrow morning (at 7am) we'll check in to the hospital for the surgery.  It should be quick, but he'll be put under, so that always makes it more of a big deal.

We had a several months there with few problems and we sort of got used to that. This week has been a bit of a reality check.

Jon Gets Arrested

Wednesday, Sept 7, Jon got pulled over for speeding.  When the officer scanned his license, it came back that there was a warrant for Jon's arrest in Great Bend, KS.  Jon knew right away what had happened.

Three years ago, Jon's work truck and wallet (along with other items) were stolen. They used his license (which did not include his SSN), to print fake checks in Jon's name and buy items with them around town.  The police there knew about it and let us know they were working the case.  Well, somehow they made a mistake on one of the fraud counts and didn't clear Jon's name.

Of course, the office who pulled him over didn't know about any of this, so he handcuffed him, put him in the back of his car, and put him in the holding area.  He called his boss who came and bailed him out.

There is a court date on Sept 19 in Great Bend...

Labor Day Weekend

The whole family spent Labor Day weekend at the lake.  We have one really good day on the lake, one day shopping, and one day just hanging out. 

Joey can't get in the water, but we let him dip his feet
We hadn't been letting Joey ride on the tube this year because he can't get lake water in his central line. We decided to cover the line REALLY well and let him do it.  He loved it.
That's Joey under the towel.  The boat usually puts him to sleep.

Katherine had fun, as usual.  Her favorite seat is right up front.
Katherine and the little skier.
Even Asante enjoyed the water.

Sunday, September 4, 2011

Yellow Belt

Katherine had her first Tae Kwon Do belt testing this month and earned her yellow belt.  She got pretty nervous when she realized she had to do it in front of a room full of people, but she did really well.

You have to watch for her in the middle of the screen.  I was trying to video her in between some big guys.

Saturday, September 3, 2011

Joey Photo Shoot

I got to do a little photo shoot with Joey to try to get a new one for over my stairs.  He did a good job and I think I got some good ones.  He's growing up and he looks so good.  You would never know by looking at him that he gets chemo every-other week.