The Bacon Family Blog

Paxten

2012-02-04T23:48:00.002-06:00

In Dec, 2010, I learned of a young girl who had just been diagnosed with ALL (the same type as Joey, but different because she was less than 1 year old). I've watched her journey online, written back and forth with her mom, Libby, and talked to them a few times at Dr. Rosen's office. Last fall, she relapsed and the doctors decided she needed a bone marrow transplant. She had the transplant in mid-Dec and the transplant worked. However, she had complications from her low immune system and ended up very sick. The doctors tried everything, but on Jan 29, her parents had to let her go. She was 22 months old.

Joey has known about Paxten for a while and prayed for her daily while she was sick. I sat him down and told him that God had healed her, but He had chosen to heal her in Heaven, not on Earth. He cried for a little while but then seemed ok. The next day (just last Monday) was his monthly oncology appointment and port access. He usually gives me no problems with going to Dr. Rosen's, but this time, he refused to go. I finally got him in the car, to the building, and into the room (I had to carry him). Once there, I got him to talk to me. He started crying and said he was scared. I think he was processing what had happened with Paxten. He doesn't understand the details, he just knows that she had leukemia and now she's gone.

At home that night, I told him that Paxten was really sick and I didn't think he would get as sick as she was. He said "as long as I take my medicines and go see Dr. Rosen, right?" I think he has now processed it all the way through and realizes why he has to go through all of this - because he'll get really sick if he doesn't. He continues to pray for her, but now he prays that God will take care of her since she's now with him. These are things he says on his own, we don't coax him.

He asked to go to Paxten's Celebration of Life, which was this morning, but we didn't think it would be good for him. I went with some other "cancer moms" and everyone gathered together afterward the service. The support from our new extended family is just amazing. We all feel close to each other and when one of us hurts, we all hurt.

I've been through a myriad of emotions this last week... deep sadness for Libby, thankfulness that Joey is doing so well (mixed with a little guilt for the same reason), fear that the cancer could come back and Joey could end up in the same position, blessed for God's grace and comfort in painful times, thankfulness for the Rosen's and what they do for our kids, and anger for all of us moms who have had to fight for our kids' lives.

Here's a picture that I took from Libby's Facebook page. I can't imagine how they are feeling right now, but they have made their faith very evident. They know that God's ways are always right, even it if means pain for them. If you think about it, please pray for continued strength & comfort for Paxten's parents as they start a new life.

Boy of the Year Photos

2012-02-04T23:11:00.000-06:00

We had our second photo shoot for the Boy of the Year. This time, he also took pictures with each of the candidates. I haven't seen all of the candidate shots yet, but Joey's look pretty good. Mikala (9) is the Girl of the Year. She spent much of the last year with no hair, but completed some of the meds and now it's growing back. She was very apprehensive about going out in public with no hat, but she came to the photo shoot with just a head band. I think the short hair actually looks great on her.

More X-Rays

2012-02-04T23:06:00.000-06:00

On Jan 16th, I took Joey in for follow-up chest x-rays (from the pneumonia) and his weekly blood work (via a finger poke). I got a call from the doctor the next day that his white counts were low (ANC of about 600), and that there was still something showing up on the x-ray. Since he had no symptoms, I was just supposed to watch him and keep him away from germs as much as possible.

New Kitten

2012-02-04T23:02:00.000-06:00

It seems like I've had a lot of posts about cats lately... Katherine took the loss of Oliver pretty hard and started begging for her own kitten. I was about her age (maybe younger) when I got my first kitten, so it seemed like a good idea, but I thought we should wait a little while. However, after just a week, I found myself looking at the website for the Humane Society and the cats they had available. That was it - we couldn't stay away. It was a hard decision between 2 great cats, but she decided on an all black, 3-month old kitten. Her name was Sally, but Katherine has now changed it to Kay. She's a sweet little kitten and takes play very seriously.

Another Goodbye

2012-01-16T16:32:00.000-06:00

Last night, we had to say goodbye to another pet - our other cat. Jon and I adopted Oliver (Ollie) just 2 months after we got married in 1997. He and I were very close for over 14 years. The last year and a half, I've taken care of his diabetes, so I knew he probably wouldn't be with us much longer, and yesterday he had a seizure that was too much for him. We got to say goodbye and Joey prayed for him and asked God to take care of him now. I can't believe that we lost both cats in 2-months' time and now have no cats running around the house. I've always been a cat person and have never gone without one for any length of time.

New Year's Day 2012

2012-01-16T16:08:00.000-06:00

We were still at the lake house and took a little trip over to Roaring River for some hiking.

December Pictures

2012-01-16T15:59:00.000-06:00

Joey's Christmas Program at Tree House

Seeing Santa at Botanica

Victory in the Valley Christmas Party

Silver Dollar City

Katherine just HAD to have this 20-ft stuffed snake.

Joey's first big roller coaster - he actually liked it even though you can't tell here.

First Christmas Celebration

Christmas Eve morning at Grandma's

Christmas morning at home

New Year's weekend at the lake house

2011-12-31T00:04:00.000-06:00

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.

2011-12-11T15:31:00.002-06:00

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.

2011-12-05T21:56:00.002-06:00

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.

Photo Card

2011-11-25T23:02:00.001-06:00

Pictures Galore Christmas

To view our unique Christmas card designs, click here.

View the entire collection of cards.

Leo 2000-2011

2011-11-19T10:37:00.001-06:00

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.

Port Access

2011-11-18T19:20:00.001-06:00

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.

Halloween 2011

2011-11-12T21:44:00.000-06:00

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.

Joey Turns 6

2011-11-06T21:45:00.000-06:00

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

2011-11-06T21:36:00.000-06:00

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

2011-11-06T21:29:00.000-06:00

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

2011-11-06T21:23:00.000-06:00

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.

Surgery #4

2011-10-07T23:13:00.000-05:00

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

Light the Night

2011-10-04T22:27:00.000-05:00

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!

http://pages.lightthenight.org/ks/WichitKS11/ABacon

Another Surgery Scheduled

2011-10-04T22:23:00.000-05:00

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.

Our First Year with Leukemia

2011-09-24T02:29:00.001-05:00

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
1 MRI
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

Surgery #3

2011-09-18T00:17:00.000-05:00

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

Rough Week for Joey

2011-09-15T22:39:00.000-05:00

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

2011-09-15T22:31:00.001-05:00

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

2011-09-15T22:30:00.000-05:00

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.

Yellow Belt

2011-09-04T09:32:00.000-05:00

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.

Joey Photo Shoot

2011-09-03T23:06:00.001-05:00

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.

Girl Day 2011

2011-08-12T23:31:00.001-05:00

I have a tradition of spending the last day of the summer with Katherine. I take the day off and we do lots of girl stuff together. This year we got mani's and pedi's, got a hair cut, had lunch, and went shopping. We ended the day with a photo shoot. I spent some time trying to get some good pictures of her. She's getting too old too fast, and she almost had a little too much fun posing for me. I'm her mom, but I've got to admit...she's a beauty.

Interesting Weekend

2011-08-12T23:22:00.001-05:00

Two weeks ago, Jon woke up about 4:30am not feeling well and ended up having an "episode" that he's had 2 times before. His blood pressure was 69/29 and he couldn't stay conscience. The last time this happened, he stopped breathing briefly twice, but, luckily, that didn't happen this time. I called 911 and we went to the ER in the ambulance. They got his blood pressure back up but, again, had no idea what caused it. He was admitted to the hospital and spend the weekend being tested and monitored. All tests were normal. We've been told by 3 doctors that we should take him to the Mayo clinic for evaluations. He's going to have some follow-up testing done here first.

On the same day Jon was in the hospital, Joey got a fever. It was still hanging around at night, so we were told to have him checked out at the ER. He was staying with his grandma & grandpa, so they brought him to the hospital and I met them in ER. For the second time in the same day, I had a family member in the ER - I had to laugh.

Joey had blood drawn from his line and from his arm, so he had to get poked and he wasn't happy about it. They have him "special cream" and he didn't feel a thing. Luckily his labs were high enough that he didn't have to be admitted to the hospital. However, we learned 2 days later that he has an infection in both his blood and his central line. There is no way to know where it was first. He had just been off his antibiotic for his sinus infection for about a week and a half, so I was sort of surprised. He is now getting a very large dose of antibiotic each day through his line.

It has to be injected very slowly, but it must not have been slow enough on the 3rd day. We were at the doctor's office and he almost passed out as we tried to leave. We let him rest a little while and then I carried him to the car. An hour later, he was fine.

Here he is giving himself his medicine.

Lake with Friends

2011-08-12T23:13:00.000-05:00

For the first time, we took friends with us to the lake house. The kids had a lot of fun together and it was a nice get-away.

Our New Family Member

2011-08-12T23:09:00.000-05:00

Jon as always wanted a Rhodesian Ridgeback puppy, but they've always been too expensive. About a month ago, one sort of fell into our lap and, even though we already had 2 dogs (and 2 cats), we couldn't turn it down. Because he's an African dog, Jon wanted him to have an African name and named him Asante, which means 'thank you'.

It's been interesting to have a puppy around again, but he's so cute and he's very sweet, even though he has some learning to do.

T-Ball Season 2011

2011-08-12T23:02:00.000-05:00

For the second summer, Joey played t-ball at the Y. His dad was the assistant coach. He missed a few games because it was just too hot, but I think he liked it overall.

Camp Quality 2011

2011-08-12T22:57:00.000-05:00

Joey got to spend a week at Camp Quality in July. It's an awesome camp that makes it possible for cancer kids to spend a full week away at camp. Each kid has his own companion that stays with them the entire week. Joey's companion was, Tobey. She took very good care of him. Joey had some of this friends there and he became really good friends with a boy named JC.

It was really hard for me to be away from him for so long (Sun - Fri), and I watched everyday for pictures on Facebook. It was strange to not be taking care of him, but he was very well taken care of there. I was SO happy for him to come home!

Joey and JC

He camp home with 3 trash bags of balloons

Joey and Tobey

I'm glad he got to go, but I was VERY happy for him to come home.

2011-07-16T00:49:00.000-05:00

After the holiday weekend, we all went back to work and daycare. I was at work for about 30 minutes when I got a call that Joey had starting vomiting. I picked him up and he spent the day with his dad. The next day, we spent some time visiting with the pediatrician and then went to see Dr. Rosen. He got his Vincristine and spinal tap. He was determined to be a big boy for the spinal and he was. He didn't fight and he was really proud that he didn't shed a single tear even though it hurt.

On the way home, he fell asleep, so I put him in bed and let him sleep a few hours. I checked on him and he felt really warm, so I checked his temp and it was 104.2. He said his whole body hurt and he could barely keep his eyes open. I paged Dr. Rosen who said that it can be a reaction to either the spinal or the chemo. By the end of the night, his fever was gone and he felt better. It turned out to be nothing much, but it scared me at the time.

This last week, Joey went to Camp Quality, a camp for cancer kids. I just picked him up today, he was there from Sunday to today (Friday). He had a complete blast. He also became really close to another boy that we had met a few times before. They were inseparable. I have some pictures but will get more, and I'll post some later.

Katherine also got to go to camp this week, but she only stayed one night. She went to a Girl Scout camp that she paid for with her cookie money. She had a lot of fun, but I didn't get muc information from her and I didn't have a way to get pictures.

Independence Day 2011

2011-07-16T00:31:00.000-05:00

Joey had been doing really well and not getting sick but then the week before the 4th of July weekend, we started having fevers. On that Monday, it got up to over 103. His new pediatrician and I didn't see eye to eye. I wanted some tests and she wanted to wait it out, so that's what we did. I told her that the last time he had a fever, it was a sinus infection, but she didn't want to x-ray him for that b/c she didn't see other signs. By Tuesday the fever went went away but he didn't seem to feel well all week. He was scheduled for a spinal, Vincristine, and steroids, but they were delayed due to the fever.

By Friday, we were packed up and ready to go to the lake for the weekend. He had a double-header t-ball game, so we went, but he didn't feel like playing. I decided to take him to Immediate Care and get the x-ray that I had wanted on Monday. We got there, and he had a fever, a high heart rate, and moderately low oxygen. They did the x-ray and his sinuses were full, which indicated an infection. Because of the fever, Joey couldn't leave town, so he and I stayed home for the long weekend, just the 2 of us.

I felt really bad for him to have to miss the trip, but we got to have some good one-on-one time together. We spent a lot of time at home, but also got to have some fun with friends and go swimming at the Y water park.

Jon and Katherine had a lot of fun with the family at the lake. Katherine rode on a ski trainer and Jon jumped off a 30-foot cliff.

Jesse, Gentry, and Joey - All 3 are Leukemia fighters

Swimming at the Y

Katherine at the lake on the EZ Ski

Disney World Vacation

2011-06-24T22:21:00.000-05:00

My family has been talking about going to Disney World for the last few years. When Joey got sick, we weren't sure if we'd still be able to go, but the doctor reassured us that we could go as long as he wasn't in the hospital. We spent a week there and it was great. Our kids got to fly for the first time, and they really loved the trip.

Joey is a Big Boy!

2011-06-24T22:11:00.000-05:00

After 5 1/2 years of sucking his thumb, he finally decided that he was done. We've tried for the last year to get him to stop but then started leaving him alone about it once he got sick. We decided to try to help him stop again and he actually agreed with us that it was time. It was hard for him for a few days, but then he was pretty much past it. It's good because it drives me crazy to think about all the germ he puts in his mouth, but alittle sad because he's past that stage in his life.

He got to go shopping and pick out a special reward. He picked Buzz Lightyear.

Katherine's Baptism

2011-06-24T22:01:00.000-05:00

On May22, Katherine was baptised at our church by her own daddy.

Awana Awards

2011-06-24T21:45:00.000-05:00

Joey usually goes to Cubbies at our church and he started this last year, but he was diagnosed the first week, so he missed most of the year. However, he got to go for the last month and his Grandma helped him get caught up with his Bible verses enough to earn his award.

Katherine finished her 3rd and last year of Sparks and earned the Sparkie of the Year award.

2011-06-11T02:03:00.000-05:00

I'm sorry that I've been so bad about updating the blog lately. We've just been crazy busy, mostly with good things. Joey has been doing really well and still taking his chemo every-other week with mostly no problems. His labs have been dipping low, but they come back up.

Tomorrow, we leave for our Disney World trip. The kids are excited but don't know enough yet of what to expect. They are very happy about getting to ride in an airplane for the first time. Joey points them out to me all the time (he likes to argue with me that an airplane and a jet are two different things), and he's been begging to go in one.

I'll be better about updating this after our trip and I'll post pictures. It's 2am now, and I better be off to bed. Good night!

Mother's Day at the Lake House

2011-05-08T15:25:00.000-05:00

Table Rock Lake has recently had historic floods, so things are a little different around the family lake house

The guys were still able to spend some time on the lake fishing, but the dock will be inaccessible most of the summer.

The weather was really nice and surprisingly warm, so it turned into a really nice weekend.

Here is the back of the house.

The water now comes up to the backyard. The water is usually out past the farthest trees.

We spent much of Saturday playing out in front of the house.

One benefit of the floods... we can now fish in the back yard...

Joey and I took a walk to see the boat dock. The water is up so high, we can't get to it and can barely even see it through the trees.

Expert Night 2011

2011-05-08T14:53:00.000-05:00

Katherine's gifted program at school has an expert night each year. This year, she did her project on blood. She printed pictures of blood cells, interviewed Dr. Rosen, made blood cells out of clay, a brochure about leukemia ("When Good Blood Goes Bad"), and her favorite, blood soup.

She did a really good job and she and I learned a lot.

Notice her arm is wrapped. Earlier that day in school, she was injured at recess while playing goalie in a soccer game and using a basketball instead of a soccer ball. It turned out to be sprained so she had to keep it wrapped for a few days, but it's now as good as new.

Easter 2011

2011-05-08T14:40:00.000-05:00

We had a fun Easter weekend with family. My cousin and her family came to town from Colorado Springs as they usually do for Easter.

Joey was feeling pretty good. He got a little tired on Sunday afternoon so he spent a lot of time in front of the TV watching movies, but he had an overall fun weekend.

Shark exhibit at Exploration Place

Easter morning in their Easter clothes

All the kids together

An ok picture of us, but it was a little bright outside...

Easter egg hunt

2011-04-15T21:06:00.000-05:00

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.

2011-04-12T22:13:00.000-05:00

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.

2011-03-19T14:46:00.000-05:00

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

2011-03-14T22:02:00.001-05:00

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!

2011-03-10T22:19:00.003-06:00

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!!

2011-02-24T22:11:00.000-06:00

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.

2011-02-08T22:23:00.000-06:00

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

2011-02-05T09:02:00.001-06:00

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!

2011-02-05T08:47:00.002-06:00

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.

2011-01-30T20:25:00.000-06:00

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

2011-01-24T21:00:00.000-06:00

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!

2011-01-10T19:57:00.000-06:00

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.

2010

2011-01-01T01:32:00.000-06:00

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!

Cave Touring

2010-12-31T20:31:00.000-06:00

Since we stayed an extra day at the lake, we decided to tour a cave nearby.

Relaxing at the Lake House

2010-12-31T20:11:00.000-06:00

Since we all are home between Christmas and New Years, we decided to spend time at the lake house. We planned to stay 4 days but ended up staying 6. We spent most of our time just hanging out but did some tourist stuff too.

Playing Wii

More Wii

Lego ship building

Playing a new game

We visited the Butterfly Palace in Branson. All of the butterflies there for the winter are white.

A good photo op, but K is giving me attitude and J is trying to give me bunny ears...

That "statue" is a real person. I thought it was cool, but Joey thought it was creepy and wouldn't let me take a picture of him with her.

Being goofy in the palace

We went into Branson for dinner and walked around Grand village.

Christmas 2010

2010-12-31T19:30:00.000-06:00

Jon and I went to Katherine's Christmas party at school.

We also went to the Christmas parties at Tree House.

Katherine got a good book in the book exchange.

In Joey's room - somehow I ended up reading to the class.

Mrs. Kathy and Joey

Grandma reading the Christmas story to the kids on Christmas Eve.

I took several pictures and Joey was goofy in every one.

Opening presents at Grandma's

Opening presents at home on Christmas morning.

This is what Joey got for Katherine.

This is one of Joey's favorite gifts.

Christmas dinner at Mom's/Grandma's. The Perez family joined us - this is Sara and Ethan.

All Good News

2010-12-24T08:46:00.000-06:00

Lots of good news and blessings from God to share today:

It's Christmas Eve and we're not in the hospital
His counts came up some this week from last week - his immune system is stronger
The rash is still there but going away
The lips sores are almost gone
No vomiting since Wednesday
He went to a movie yesterday for the first time since diagnosis (I've been too scared to take him into a theater)
He gets to "meet" his Uncle Dave (Jon's only brother) today - he lives in Japan and Joey was 18 months old last time he was here.
I'm done going to work until Jan 3
My company made a deal with the state this week to keep them in Wichita for the next 10 years, rather than moving to a Louisiana, which as been an option for the last several months
Really BIG news: Jon got a job and starts Feb 1! He'll be designing and selling for Superior Landscape Management. It seems like it's going to be a much better place to work than where he was before and it's the exact type of job he wanted.

MERRY CHRISTMAS!!!

Articles

2010-12-20T22:07:00.002-06:00

Here are some articles about Joey's Pilot for a Day:

http://www.usa-patriotism.com/articles/ne/pod_bacon.htm

http://www.af.mil/news/story.asp?id=123235343

http://www.mcconnell.af.mil/news/story.asp?id=123235120

2010-12-20T21:14:00.000-06:00

After the awesome Air Force experience last Friday, we went to Table Rock for the weekend with the family. My parents recently bought a house right on the lake and this was our first chance to go with Joey. It was good to get away.

Last Tuesday, he got 2 hours of fluids and then a spinal tap. He was a very big boy and didn't fight them (because he "finger promised" me that he would be a big boy), but the doctor had a difficult time getting the fluid to come out and had to dig a bit, so it was painful for him. He carried around his bag of chemo for 48 hours from Tuesday to Thursday afternoon. He spent Wednesday morning at Tree House - the first time he has taken his bag there. I thought he might be embarrassed but he was fine.

They checked his blood on Tuesday, and we discovered that some of his counts plummeted from the week before. His immune system is lower now than it's been for a while. We're starting to see some side effects to the methotrexate. He's got a full-body rash, sores on his tongue, and sores on his lips. There's not much we can do - just wait for them to go away. They don't hurt him as much as they look like they do.

We saw the Nutcracker Saturday night and he loved it. I made him wear a mask since his counts were so low - I was too paranoid about having him sit in an auditorium with all those people.

He's been battling a cold for the last few weeks and had stopped eating this weekend. When he saw Dr. Rosen this morning, he wasn't feeling well and the doctor knew the look. He handed him a bucket and Joey vomited for the first time since this all started. Afterward, he felt much better and ate his lunch. After sleeping for the afternoon, he woke up with lots of energy for the rest of the day.

Outside Bass Pro Shop in Branson

Making Rudolf at Build-A-Bear

Katherine, Kyler, Kennedie, & Joseph with their new friends

Being silly at Bass Pro

Got a pic of Katherine with Santa but not Joey - he refused b/c it wasn't the "real" Santa

Posing before going to the Nutcracker

Being silly -if you look close, you can see the sores on his poor little lips

Pilot for a Day

2010-12-11T02:05:00.000-06:00

We got to spend much of our day at McConnell Air Force Base where Joey was Pilot for a Day.

It was amazing - they put a ton of effort into it and made it as special as possible for him. He turned shy when people were really watching him, but he loosened up and had fun with everything. Praise the Lord, he was feeling really good and had more energy than I've seen for a long time. It couldn't have gone better. We are so thankful to everyone there who made it happen. They were so good to us!

Here was the schedule of events:

Presentation of his own Joey-sized flight suit and patches

Climbed the stairs to the control tower and watched a touch-and-go of a KC-135

Visited the control tower simulation room

KC-135 flight simulator - presented with his wings and his own helmet and got to "fly"

Toured a real KC-135 - learned how to use the boom and sat in the cockpit

Visited the base fire department to shoot water with the "snozzle"

Met some attack dogs, saw a real demonstration, and got to pet the sweet boy, Adam (at least he's sweet to the "good" people)

Pizza and cake party where we (mostly Joey) were presented with gifts and got to meet more awesome people

I'll get more pictures from the base photographer and will share them then, but I'll share some of the ones I took for now.

Looking at maps during a tour

They told him that he should wear his hat whenever he goes outside and take it off when he comes in and he was determined to follow the rule. (He only had it on here for the picture.)

In the control tower watching a KC-135 come in for a touch-and-go

He got to sign his name in the tower.

He got the Commander's parking space while we were there. (I think it's the Commander's)

Receiving a special coin

Getting his wings from the pilot he flew with in the simulator (a shy moment, but he loved it)

Another shy moment getting his helmet, but he loves it and can't wait to show it off.

In the simulator - he really wanted to sit there by himself, but he wasn't tall enough to see out of the windshield. I guess tankers aren't made for pilots who are 39 inches tall.

After "flying" - he made a couple of landings and did some spins.

A real KC-135 (his eyes are really sunlight sensitive right now)

Looking at the boom

At the fire station, after shooting the water

He's helping empty the hose.

The firemen

Adam - the dog who can love you or kill you, depending on what he's told to do :) (Actually, I don't think the dogs are trained to kill, but he certainly could!) I've never seen a dog so well trained in my life. It was amazing.

I believe this was made by an Air Force wife. Joey wanted the wings, so they cut them out and sent them with us to eat at home.

Joey fed live goldfish to the piranha's - I think the men thought it was funny that he wanted to do it - they are gathered around to watch. Notice Katherine hiding behind her dad - she didn't think it was as cool as Joey did.

2010-12-05T22:37:00.000-06:00

There's not too much to report from the last week or so. He's been getting chemo each week now and has been on the steroids this week. I can't wait for him to go off the steroids - they mess with his stomach. He has been slowing down some this week, but not too bad. He's willing to walk most of the time but asks to be carried more than normal and doesn't like going up and down the stairs. He'll go in tomorrow afternoon more treatments.

We did some fun things this weekend. His grandma took him to the zoo Friday afternoon, we all went to lunch and a Christmas play on Saturday, and we had a family Christmas dinner Saturday night with my Dad's side of the family. Tree House had their Christmas program Saturday afternoon and I was hoping he would participate, but didn't expect him to. They tried, but he refused, so he sat on my lap and watched his class. A year ago, he had a lot of fun singing in his program. We see a pretty big difference in his personality since he's been sick and spent so much time in the hospital.

I'm really praying that he stays well this week. This Friday, he gets to be the Pilot for a Day at the Air Force base. The have 4 hours of stuff planned and every morning he asks "do I get to be pilot today". After that, we're going to my parents lake house for the weekend. They bought it right around the time that he was diagnosed and we haven't been able to leave town until now, so he's really excited to go. His grandpa has already checked out the directions to the nearest hospital to the house. It's risky for us to plan too many things, but it's hard not to. We just have to know that we could end up in the hospital and have to cancel.

Playing Wii - Super Mario game that he loves

9 Kids at my aunt's for Thanksgiving

Trying to get the star on the tree - he wasn't quite tall enough. (Joey refuses to wear clothes at home, so I have hundreds of pictures of him in his underwear - at least he had his shirt on here.)

Decorating the tree at Grandma's

He got to open one present from Grandma after putting up the tree.

2010-11-30T21:57:00.000-06:00

Joey went to the cardiologist today for a follow-up from our last hospital stay. Everything looks great. They have no idea what caused the high heart rate, but it's gone now and there is no damage. This was very good news. Now we just keep our eye on it to make sure it doesn't go back up.

He's not feeling great today, but could be much worse. I can tell he's starting to get a little bit weak again. He got a single dose of chemo on Monday and is on the steroids again for this week. He hasn't been to Tree House for a while but will be going tomorrow and Thursday, so I really hope that goes well. They are having a Christmas program on Saturday - I'll be surprised if he participates, but we're going to go anyway just in case he will.

He did have a really good Thanksgiving. He had lots of cousins in town and played all day. I was so thankful he wasn't sick for it.

2010-11-24T22:12:00.000-06:00

Joey finished carrying around his bag today, for this time anyway. He'll carry it for 2 days every 3 weeks for the next 20 weeks or so. He will get a single dose of chemo the next 2 Mondays and will be back on the steroids again next week for 7 days.

After we dropped off the bag, we took him to Wal-Mart to use a gift card that he got from my aunt and uncle (Jenni and Steve). He picked out the new Super Mario for the Wii and is already addicted to it. I think Jon is too.

I created another website about a year ago but never did much with. We've decided to use it in conjunction with this blog to support our efforts to get past this "stage" in our lives. Joey and Katherine made some paintings which have been turned into hand-made Christmas ornaments and are available for purchase at http://www.kjtoybox.com/christmas_ornaments.

Thank you so much to everyone who has supported us. We've received some donations through this page, all from people we've never even met. There are some wonderful people out there - THANK YOU!

In the spirit of Thanksgiving, here is a partial list of what I'm thankful for (I can't list everything here):
My family
My home (especially with the wind blowing like crazy outside tonight)
My job
God's faithfulness
Our church family
The massive research and multiple studies that have resulted in finding a cure for ALL
I live in a country where medical care is readily available
Health insurance
Joey's cancer is responding to the treatments
We live in Wichita and are close to the doctor and hospital
To spend Thanksgiving NOT in the hospital
Friends and family who have been great to us since Joey's diagnosis
Strangers who have been great to us since Joey's diagnosis

Happy Thanksgiving everyone!

New Treatments

2010-11-22T23:54:00.001-06:00

After having about a month off, Joey started the next phase of treatments. Today marked the start of his consolidation phase, which will last about 6 months. He went into the doctor for a few hours - he got a bag of fluids, a spinal tap, and a bag of chemo to bring home for the next 48 hours. I was there for the first half which included just the fluid drip. He doesn't mind sitting there - he mostly played his DS. He also got a visit from a sweet old therapy dog.

I left before the spinal tap, but Jon said it didn't go well. Joey decided that he didn't want to do it - when he decides he doesn't want to do something, he'll do anything he can to keep it from happening. Jon described it like trying to shave a monkey - I'm not sure what that means exactly. Several people had to hold him still, but when it was done, he admitted it didn't really hurt too much. I'm really glad I wasn't there.

When he first got home, he refused to wear the backpack to carry around the chemo bag because he said it was too big and hurt his back. I was surprised at how big it is - I was expecting something more his size. After a while, he finally put it on and got around pretty well. He even played Wii for a little while.

We'll go back tomorrow to get a new bag and then again Wednesday to have it taken off and get fluids again. I'm really hoping this new medicine doesn't make him sick and that he's able to enjoy the holiday.

Happy Thanksgiving everyone!

Belated 5th Birthday Party

2010-11-22T23:24:00.000-06:00

Since we spent most of October in the hospital, we decided to have a late birthday party for Joey. He was feeling pretty good since he was in a break from treatment. He wanted everyone to come dressed in costumes. He had more fun than I've seen him have a for quite a while.

Joey's Carnival

2010-11-22T23:15:00.000-06:00

Tree House (Joey's Daycare/Preschool) held a carnival in his honor. It was a great turn out and Joey played for the whole 4 hours. A very pregnant Mandy (director of TH) organized it and it was run by volunteers who were mostly parents of other kids at his school.

Stats

2010-11-11T22:50:00.000-06:00

I was thinking the yesterday about what we (mostly Joey) have experienced in the first 45 days of his illness.

Here it is:
4 hospital admissions totaling 23 days (4 in the PICU) (including his birthday, sister's b-day and Halloween)
2 surgeries (2 Hickman placements)
2 bone marrow aspirations
2 spinal taps
6 blood transfusions
1 platelet transfusion
4 chest x-rays
2 CT scans
1 MRI
3 EKG's
2 Electrocardiograms
2 times dehydrated
2 central line blockages
28 days of steroids
7 doses of chemo drugs
1 sinus infection
1 round of antibiotics
1 large, painful rash no one could diagnose (narrowly missed having a skin biopsy)
8 pounds gained (23% add'l body weight)
1 lost job (Jon's)
1 lost vehicle (Jon's company truck)
1 work position given up (Angie had to step down from current role at work to one that is less intense)

No wonder we all feel like we've been run over by a train!

On a happier note... we have made many new friends along the way and have experienced the love and support of so many people.

Update on Joey: He is feeling much better and almost acting like himself again. He was so excited today because he was finally able to go up the stairs with no help. He won't have another treatment until the 22nd - I'm so thankful for this break he's getting.

Update on Jon: This week has been one of the hardest for him, second only to when Joey was diagnosed. Losing his job was such a shock that it's taking some time to digest what has happened to him and learn to switch his gears. Losing that significant piece of his identity is very difficult. After going through what we have with Joey, all of our emotional reserves are completely exhausted, and he didn't have any left to try to deal with this. However, he is coming through and starting to see some light as he's able to accomplish some things at home. He has also received a few calls about some landscaping work (including one of the doctors from the hospital).

Joey's preschool is hosting a carnival this Saturday to help us out financially. They have been so great to us and to Joey. Here is he information if you live close and would like to come:
Saturday, November 13 · 12:00pm - 4:00pm
Family Church
11135 W Kellogg (across from the Cotillion
Wichita, KS

Please plan attend a Fall Carnival hosted by Tree House Learning Center for the Benefit of Joseph Bacon.

There will be face painting, food, bouncy, carnival games and a great raffle. Items to be raffled include:
Signed soccer ball from Women's 1999 World Cup Championship Team (including Mia Hamm)
Goodie Baskets valued up to $200.00
Massage
Meals
and many others.

Good News / Bad News

2010-11-07T17:24:00.002-06:00

We finally got to go home late Wednesday night after a transfusion (6th one, so far). They didn't figure out why he was having the issues, but they sent us home since they weren't getting any worse. He wore a heart monitor for the first 24 hours that we took to the cardiologist to review before we meet with him in 2 weeks.

On Thursday, we had an appointment with Dr. Rosen (oncologist). We got the results of the chromosome tests which confirmed that Joey is in the low risk category - very good news. There are 4 possible: very low, low, standard, and high. He gave us a document that lays out the 2.5 year treatment plan for the low risk category. It explains the treatment week by week. I love to plan, so I was very grateful. Consolidation therapy begins on Nov 22, so he'll get a break and should be feeling more normal soon. I'm amazed at what they have learned about the treatments. There are a lot of specifics - certain meds at the right times, etc. It's just amazing that they have figured all of this out.

That was the good news, and now for the bad: Jon was told by his boss on Tuesday that he has missed too much work to be with Joey during all of these unusual hospitalizations. He gave him 3 options, of which, the least worst was a layoff. The other options would have guaranteed no income for the next several months - at least the layoff will allow for unemployment. It was another devastating blow. They had talked through everything a couple of weeks ago and Jon thought they each had a good understanding, but there was obviously a miscommunication somewhere. To make it worse, Jon has been accused by some people of "wanting" to lose his job. We are completely confused how anyone could think that to be the case. Why would we want that to happen in the middle of everything else? We're going into winter, which means that other landscaping jobs will be very scarce. There is a very good chance that Joey won't be hospitalized as often in the future - everything we've been dealing with is very unusual. His boss said that Jon can't guarantee that he won't continue to have complications.

(Note: I'm not going to publicize the name of the company here. If you happen to know where Jon worked, please don't slander their name. I'm very unhappy with the owner for making this decision, especially now, but there are many other employees there who could be harmed by publicizing this issue and trying to convince others not to do business there. I don't want to make a bad situation worse.)

We're confident that we'll be ok, but it takes a little while to get past the shock and hurt. I think tomorrow is going to be the worst day for Jon. I fully believe that this is part of God's plan for us. Just because we don't understand it doesn't mean that it's not under control by Him. There will probably be something better for Jon around the corner.

As always, we are very thankful to everyone for all of the kind words, donations, fundraisers, prayers, etc. I can't imagine going through this without you!

Here's Joey in the hospital with all his monitors. He tried to ride a tricycle to the playroom but got put back in bed b/c his heart rate went to 200bpm. After resting, we took him to the playroom in a wheelchair, but he was determined to drive it himself.

Joey's hair has been really different, and we realized on Thursday that it was starting to come out a bit, so Jon took him to get a haircut. He doesn't look very happy in the picture, but I think he actually had fun. He got to buzz off Jon's hair too. He has lost some of the swelling in his face, but he still doesn't look much like the Joey I know.

2010-11-03T00:19:00.000-05:00

We aren't really any closer to understanding what's causing Joey's symptoms, but I think they are about to give up and just send us home. The heart rate could possibly be explained by coming off the steroids. We don't have a good explanation for the rash or pain in his back. It's not getting any worse, just staying the same, so I think we'll be able to go home and just watch it. We're meeting with the doctors in the morning.

We're really being tested in many different ways right now. Some of you know that it all started back in March. I was going to get my hair cut and I got a large dent in my 2-day-old windshield and then about 5-minutes later, I got a call from Jon that our new dog needed a $1,300 surgery. I was very annoyed but had no idea that it was the start of one bad thing after another for the next 8 months. In hindsight, many of the things were not as bad as they seemed at the time, but they did cause a lot of stress. Then they started getting worse. We keep thinking that it has to be over, but then we get hit with something else. I'm not really trying to complain; I've just never experienced anything like this before. I'm not sure what to make of it.

I pray for a day that we can look back at this as a time that we got to experience God in our lives like never before... that we remember this as our time of greatest growth and God's preparation for whatever he has for us.

In the mean time... you may not want to stand too close to us :)

Out of PICU

2010-11-01T23:02:00.000-05:00

Well, they moved us out of the PICU today and back into the same room we were in after he was first diagnosed. It's amazing how much we like this room now after having the PICU experience.

Joey has the doctors just stumped. His heart rate is still high - but its a steady beat. He also has a red rash that started on Saturday and seems to keep growing. It's very painful under the rash. He has a hard time getting in and out of bed, but when he's out, he's fairly active. While watching him walk down the hall tonight, we noticed that he's favoring one side of his body. He didn't say it hurt until we asked him, then he said it did.

They are going to watch his temperature and heart rate closely tonight and then do an MRI in the morning. The redness and pain on his side are near the place where they took the bone marrow, so they are wondering if it's related. An infection in that area could also be causing the increased heart rate. The questionable thing there is that he had a slightly elevated heart rate the day before the aspiration. That could, however, have been caused by going off the steroids just 2 days before. It got much higher after the procedure.

Another thing they are watching is his adrenal system. They checked it this morning and it was really low. That could possibly be from just coming off the steroids, but they'll also watch it to be sure.

His spirits are still high, but he's starting to get a little grumpy again if he doesn't get what he wants. I think he's just really tired of being here. His mind seems to be sharper now than it has been for several months. In hindsight, he was sort of walking around in a fog for a while.

There are so many variables right now that it's really hard for them to pinpoint what's going on with him. One of my favorite shows is "Mystery Diagnosis". I like watching it, but it's not as much fun when it's your own child.

Our specific prayers: 1) doctors to find that all of these symptoms are related to the same thing and that thing is easily treatable. 2) for the steroids to get out of his system so he can feel and look more like himself again.

2010-10-31T22:12:00.000-05:00

Well, they now don't think he has myocarditis. They ran some other tests that were not consistent with it. After looking at everything, they think there is something outside of the heart that is causing it to beat fast. To be sure, they performed another EKG tonight and will do another echo in the morning. They are a bit stumped but gave us some possibilities. They are also running 2 tests in the morning to check his adrenal system. We also have to wait and watch. Because they need to monitor his heart rate constantly, they are not moving him out the PICU. They aren't going to let him go home until they figure out what is going on. The pediatric cardiologist spent much of today trying to figure it out and talking to Children's Mercy in KC. We are praying to get some answers tomorrow and they it is something easy to fix.

He still feels good and got up and played today. His spirits are also still really good, which is such a blessing. They just don't understand how he can feel so great and have no other symptoms, but have such a high heart rate.

Fun in the Hospital

2010-10-30T22:48:00.001-05:00

We are still in the PICU. He has been diagnosed with myocarditis. It is an inflammation of the heart that is sometimes seen in patients receiving chemo. They believe that his heart will heal after a few months on medication. We don't know, however, if his heart will heal with scarring or without. They continue to monitor his heart rate and check his VBG O2 saturation a few times each day. They want it to be 70% and it is currently 65%. It has to go up to 70% before we get to leave the PICU. We're sad that he has to spend Halloween here (especially after being in the hospital for Katherine's birthday and his own), but he's taking it well.

They have been letting him go across the building to the peds floor to play and attend the Halloween party. He just has to take his portable monitor with him. His spirits are good and he's able to actually have fun when he goes over there.

Remission

2010-10-29T21:45:00.000-05:00

We found out today that Joey is officially in remission! This means that only less than 5% of the cancer cells remain in his bone marrow. Remission was the goal for the end of the 28-day induction phase, which ended on Monday. We will meet with the doctor next week and hopefully find out a few things: 1) the genetic test results from the first aspiration 2) the risk category that he is in (low, standard, or high), & 3) the treatment plan for the next 2.5 years.

The heart issues are a speedbump that may cause us to be in the hospital a lot, but he should be able to work out of them. Right now, his heart rate is in the 150's. Normal for his age is 80-130. His spirits are still high, which is great. He had some fun today at a Halloween party here at the hospital - I'll post some pictures later. He's just really ready to be home. It has been 37 days since his diagnosis, and we've spent 18 of those days in the hospital. It's really hard on him. The remission means that he'll have some breaks between treatment, but I believe he'll have a spinal tap and chemo into his spine (as a precaution) next week or the week after.

We greatly appreciate all of the prayers and support we continue to receive. Thank you!

Back in the Hospital

2010-10-29T21:32:00.000-05:00

While at a checkup on Wednesday, his heart rate was high - in the 140's. It could be caused by the swelling (from the steroids), it could be the chemo, or it could be the low blood counts. Then we came to the hospital yesterday (Thursday) morning to have a bone marrow aspiration to see if he's in remission since his induction therapy ended on Monday. After he woke up from the procedure, his rate went up more. After a while, it was 190-200 and stayed. They started him on some fluids which brought it down to the 170's. They did an echo, an EKG and chest x-ray, which all looked ok. Then they ordered a blood gas test. When they went to draw the blood, nothing would come through his line. The doctor wanted the test right away, so they had to use a needle and draw from his arm, which wasn't fun. They were able to clear his line in about 30 minutes - it turns out that one of the sedation meds didn't get cleared completely from the line which made it clog. The blood gas test results came back and showed the cause of the high heart rate. He was diagnosed with cardiac diastolic dysfunction. Basically, his heart isn't resting properly in between beats.
They admitted him and moved us to the pediatric intensive care unit. The meds needed to help his heart require intense monitoring which he can only get in the PICU.

His spirits are good, and he's smiling again. It's so nice to see his smile and hear his laugh. I took a picture on my phone in the Peds Sedation room yesterday.

Jon stayed all night with Joey last night - I just couldn't stay in the PICU. They didn't get much sleep and Joey got a little goofy, so Jon got out his camera to video. Make sure to turn up your volume when you watch it. Keep in mind, it was 1:00am in the PICU, which is a big room with only curtains to separate the patients.

On youtube: http://www.youtube.com/watch?v=e4_pE9IduP4

Please Vote

2010-10-25T22:53:00.001-05:00

I'll never forget the moment that we first found out that Joey had leukemia. I think the experience is much the same for all parents who are told that their child has cancer. It was one of the most shockingly horrible moments I've ever experienced. At this point, I knew almost nothing about leukemia. I didn't know that there have been huge advances in the research and treatment of childhood leukemia. Later that day, I was told by the oncologist that this is a very deadly disease but they now know how to cure most patients. The panic was still there but with it was a strong sense of hope.

I have since learned that the advancements made are largely thanks to the Leukemia and Lymphoma Society that was created in 1949. It was created by a family who had lost their teenage son to leukemia, a disease that was 100% fatal at the time. They began raising funds for research and have become the leading private funder of blood cancer research. This research has lead to the treatments that we have today and has saved the lives of many children.

(You can read the full story here: http://www.leukemia-lymphoma.org/all_page?item_id=221384)

If it were not for this work, we would be facing a much different future for Joey.

However, there are other childhood cancers that do not have such a history. There are other parents who are told that their child has cancer and aren't given much hope for treatment or cure.

If we don't do something, this may never change. Just as in the LLS story, there is another group of family and friends trying to create hope from loss. Young Kyrie Thome lost her battle with brain cancer, the #1 mostly deadly childhood cancer. From this loss came The Kyrie Foundation. They are a young foundation whose mission is to "raise awareness and funding to cure pediatric brain cancer."

The foundation is in the running to be awarded $250K from the Pepsi Refresh Project. They are currently in 4th place but must be ranked in the top 2 by Oct 31 to win. Please follow this link to learn the 3 ways you can vote. You can vote 3 different ways once every day. It only takes a few minutes and is your way to help make a difference. I know personally how important this research is for thousands of young children and their families...

2010-10-21T20:22:00.001-05:00

Monday night, we talked to Dr. Rosen about giving Joey some medicine to help his tummy, and when he found out that Joey was in pain, he told us to go the hospital. It was about 9:30 and the kids were already in bed, so we figured out a plan and were at the hospital within about an hour. I stayed the night with him and got very little sleep. At about 2am they took us down for a CT of his abdomen because his belly was very distended, and he was in pain. Afterward, he rolled around in his bed and groaned in pain for about an hour. He looked over at me at one point and said (very seriously) "only God knows how to help me now". After than, he looked peaceful and was able to rest briefly. Then he suddenly had to go potty and had a huge BM - after that, his belly was normal and he felt great. He looked just like Joey again. It was like he had a close connection with God that only he understood.

The rest of the week as been up and down - he feels ok for a while and then he eats and gets a large belly that is really painful. The CT, x-ray, sample testing, etc, have shown nothing usual except massive gas bubbles in his intestines. They see nothing that helps them determine a cause and don't want to send him home without knowing what's going on. They have said that he may have an abundance of bacteria in his intestines because his immune system can't kill them. Right now, we're taking him off of diary to see if the chemo is causing him to be lactose intolerant. So far, the meds for that don't seem to be working, but it may be too soon.

The good news is, his blood counts are going in the right direction. His platelets actually made it up into the normal range today, so his body is now making them on its own. He was supposed to get his final round of chemo during this phase (induction phase) but Dr. Rosen has put it off until tomorrow due to his belly.

Jon and I have been working some this week - alternating shifts at the hospital and getting some help from Mom and Rick. It's good to not be here all the time, but it's also hard to not be here.

Yesterday was his 5th birthday and he was upset because he wanted to be home. We had a small little party for him in a room at the end of the hall. He had kids here and played for the first time in almost a week. It was good to see him act like a kid again. He made it through dinner, gifts, cake and ice cream before he started feeling bad again. At that point, he was done and wanted to go back to bed.

My niece Kennedie (who is so adorable) was given $1 from someone yesterday. When Joey opened his card from her, she had given it to him. Chad didn't even know she had done it - she did it by herself because she wanted Joey to have it. It was so sweet.

Joey also got a video from the little girl who says she's his girlfriend (he says it too). Her mom used to be Joey's teacher but they moved out of state recently. They posted it to my Facebook page. I tried to copy it here, but don't know how. She blew him a kiss at the end and made him really embarrassed. He had a huge smile, which I don't see often these days.

2010-10-18T19:32:00.001-05:00

Wow, what a weekend. Friday, Joey's stomach issues got worse. We had lunch with Katherine at school, but it was not easy. After that, we went to the hospital for the blood transfusion, but they became concerned and decided to admit him for the night. Katherine's slumber party was that night, so Jon stayed with Joey and I went home to the party. Fortunately, we had a lot of help. My friend Suzanne decorated and cooked, and Shawna and Amy stayed to help with the girls. I could have never done it alone and really didn't want to cancel it for Katherine's sake. It was a success - I think all the girls had fun.

As it turned out, the x-rays of his chest and abdomen were clear but he was dehydrated according to the blood tests. It was a good thing they admitted him - they filled him with fluids.

Saturday morning (on Katherine's 8th birthday), one of the nurses at the hospital was changing the dressing on Joey's central line. She couldn't get the gauze to come off, so she pulled out her scissors and before Jon realized what she was doing, she froze. Jon asked her what happened and she said "I might have cut his line". She cut it off about an inch and a half from his chest. We think it was coiled and she didn't see it. It's a very basic rule never to use scissors around a central line - I know that and I'm not a nurse. I was pretty mad when I first found out, but I know it was a complete accident. The surgeon tried to find a repair kit, but there was not one in the whole city, so Joey went into surgery on Saturday afternoon to have his cut line removed and a new one put in. They had to create a whole new track - the exit is about 1/2 inch from the old one. He tolerated it better this time than the first time - he wasn't in as much paid afterwards.

We had to cancel Katherine's birthday shopping. She spent the day with some friends and had a fun day, so I think she was mostly ok with it.

Sunday, I woke up with Joey's stomach bug but not as severe. It still made it difficult for me to help care for him. They released him at about 11:30 and we planned to to have Katherine's birthday dinner and then take her shopping, but it didn't happen. As soon as we got home, Joey's "issues" started again after stopping while in the hospital. Luckily, Mom took Katherine to a movie.

I woke up feeling fine today but worked from home to be with Joey. He still isn't feeling well and the "issues" haven't lightened up yet. Jon just called Dr. Rosen to ask if we can give him something to stop the diarrhea, but found out we may end up back in the hospital tonight. We are praying not.

Joey's birthday is Wed and I really want him to be able to enjoy it by taking snacks to Tree House and having a b-day dinner with cake. If it doesn't happen, we can do it later, but he'll be disappointed. Right now, all he wants to do is lay around.

One other thing... Jon left his wallet in the surgery waiting room on Saturday. We got it back from security but today noticed some charges on our account that weren't ours. Turns out, someone took the credit card out of his wallet before they turned it in. Nice, huh...

2010-10-14T23:00:00.000-05:00

Joey's week has been a little hard. He didn't feel great all weekend until Sunday night, when he started eating everything in sight again. Each afternoon, he seems to get a low-grade fever. He also developed horrible gas. His tummy looks pregnant and he complains that it really hurts. The other symptoms seem to change regularly: he goes from being really tired to wired, not wanting to eat to starving and eating as much as we'll let him, happy to angry, constipated to diarrhea (TMI, I know), etc. We never know what we'll get minute to minute. Dr. Rosen reassured me today that these things are all normal with the sickness & meds. Thankfully he still hasn't gotten very nauseous - it could be much worse. As of 2 days ago, he's gained 6 pounds. His clothes are all getting too small. Starting tomorrow, I'm going to put him in sweats-type clothes each day.

When I got to Tree House yesterday, he was sleeping and I instantly noticed that his color was gone again. He was much more lathergic yesterday and today, so I wasn't surprised when the blood test showed his counts were low. We are going in for a blood transfusion tomorrow. His white count dropped dramatically down to 0.6 - the lowest so far. That is also normal while getting chemo.

October is always a busy month for us and I want this one to be as normal as possible for both kids (esp. Katherine). I got a little overwhelmed today trying to figure out how to manage everything for the next 2 weeks. If I didn't have a full-time job, it would be a little easier, but that job is providing the insurance that is paying for most of Joey's medical bills, so it's very important. I can't really complain since they are being great and working with me.

My day tomorrow: I'm working from home in the morning, having lunch at school with Katherine, going to the hospital for the afternoon (where I'm going to try to work), picking Katherine up, and then hosting 9 girls for a slumber party for Katherine's birthday. It's taking some coordination and help from some friends that I'm happy to accept. It wouldn't be fair to Katherine to make her skip over her birthday because Joey is sick, so we're making it work.

Thank you all for your continuing prayers. We've gotten a little more discouraged this week, but what we're experiencing is all normal when dealing with leukemia, and it should get better once he's out of the induction phase in a couple of weeks.

We took another picture of Joey with his growing cheeks.

2010-10-10T14:24:00.000-05:00

While we were leaving Dr. Rosen's office on Thursday, there were 2 women at the front desk. One of them has a son who was recently cured of lymphoma by Dr. Rosen and I think the other was his grandmother. The older women is part of the Daughters of the Revolution in Woodward, Ok. The women in the group made blankets to give to Dr. Rosen's patients. Joey just happened to be the first patient to receive one and got his pick. With a little encouragement from Jon, he picked the Chiefs blanket. She also took a picture of him to show the other women back in Ok.

2010-10-09T00:50:00.000-05:00

Joey did really well during at his appointment yesterday. Jon came because I wasn't sure that I could hold him during the spinal tap. He asked if there were going to be any pokes. We couldn't lie and told him there would be just one, which made him scared. He cried for a little while, but stayed laying still. Once he got the local block, he was fine. He was hungry all day so I got him some ice cream after we left.

The doctor said he is ok to have a birthday party as long as it's small and he doesn't get too rowdy. We decided to have a small group of friends over for a costume party. We've been planning for him to be Davey Crocket for Halloween, but in the last week or so, he keeps saything that he wants him and his friend Jackson to be Mario and Luigi. He kept asking so I caved and bought him a Mario costume - it's pretty cute. Jackson is going to get Luigi - Joey's super excited.

Last night, we had some friends over to watch the K-State game. Joey was so tired that he didn't get up to play with the other kids. He sat next to Jon most of the night and grazed on snacks for about 2 hours until his tummy hurt.

He ran just a low-grade fever today for the first time and said his tummy hurt, while he was at Tree House. They asked him what he wanted and he said he just wanted to go home. His Grandma was on her way home, so she stopped to pick him up and brought him home. His temp when down really fast and his tummy felt better, but he didn't really eat anything after breakfast this morning, when he ate 4 cinnamon rolls. Tonight he's staying with Grandma and Grandpa. We're planning to venture out to a birthday party and the Leukemia walk tomorrow night as long as he feels well enough.

2010-10-05T23:07:00.001-05:00

We had our first appointment at the oncologist's office. Joey has gained 4 pounds in the last week! This is normal while he's on the steroids. I've heard from other mom's that their kids gained a ton of weight in the first month because of them. I've started taking pictures of him to see how much his face changes. His cheeks are already a little bigger. He can't seem to get enough french fries and chicken nuggets. I asked the doctor if I should tell him no when he asks for them, but he said to go ahead and let him have it.

I got some good information from the doctor:

There is only a 50-60% chance he'll lose his hair.
Less than 7,000 kids in the US get some type of cancer each year, so childhood cancers are actually very rare.
Wichita has the only child cancer center in Kansas, so we are very lucky to be here. The other options for rural Kansas patients are Denver or Kansas City.
During the first month, he classifies kids as Standard or High risk - Joey is currently Standard risk due to his age, the lack of cancer cells in his spinal fluid, and white blood count.
After all bone marrow results are in, he classifies them as Low, Standard, or High. The end result will be the same, but the level of treatment will be more intense as the risk increases. We should have these results in 2-3 weeks.

The plan:

This Thursday we have a spinal tap (Joey will be awake this time), chemo injected into his spine, and chemo through his central line.
We'll be back in for chemo the next 2 Thursdays.
The week after that, they'll do another bone marrow aspiration to determine if Joey is in remission - most kids are in remission at this point.
After this, we should have the final results from the first aspiration, know which risk category he is in and learn the treatment plan going forward.

His blood counts were good today, which means that they were very stable from last Friday and not going down.

He spent this afternoon at his daycare. He had no problems going in and staying, although they said that he got extremely tired after I left. I was a little surprised because he didn't get out of bed until almost 10:00 this morning and I dropped him off around noon, so he was only awake about 2 hours. I'm planning to go to work all day tomorrow, so he'll be at daycare all day. He says he's ready for it. I don't think I'm ready yet for him to go to church tomorrow night. Nothing against my wonderful church, but I've taught the preschool age a lot the last 5 or so years and I think I always had at least one sick child there.

I've had several people comment that my daycare must be a great place - it really is. They are being so good to us there, and I know they love my kids. Here is their website if anyone wants to check them out. http://www.treehouselearningonline.net/

Here is Joey tonight. He looks much better than he did - even the red circles around his eyes seemed to disappear today. He has always had full checks, but they are a little more full than usual. Also - you can see his stitch and large bruise from his central line. He loves showing off that stitch, but it's almost gone now.

2010-10-04T22:27:00.000-05:00

I don't have as many things to write about now that we're home from the hospital, but that's really a good thing.

I kept Joey home from church yesterday morning and Jon took Katherine. I'm just not ready yet to expose him to all those germs. Also - I've gotten used to seeing his blood counts each morning and now I feel much more in the dark with what is going on inside of him.

I buzzed his hair a little shorter, but not super short. I didn't think about how hard it was going to be to keep the hair out of his "sterile" area around his line. I taped some plastic wrap on him - it looked ridiculous. I also gave him a bath for the first time and changed his wrapping on his line for the first time by myself. It was a lot harder than it seemed in the hospital. It took me 15 minutes and Joey got very impatient because he was super cold. When Jon saw it later, he laughed at the amount of tape I used and offered to be the main line cleaner. He said he was offering because I have enough to do around here, but I know he just didn't like the way I did it. At least he was nice about it...

We went to Mom's for lunch after church as we usually do. Joey always likes say the prayer before we eat. Over the last year or so he has started adding to his prayers. Yesterday he said "I pray that I get better so I can go back to school." It was so sweet, I got choked up for a second, but I didn't want him to think anything was wrong.

Today, I worked from home. I took Joey to Tree House (his daycare) for a couple of hours and stayed with him to ease him into it slowly. They were great with him. The kids were very good, but did have a lot of questions. One girl asked me "why is his blood sick?" I could only tell her that no one knows why. He warmed up to being there after a while. Tomorrow, I'm going to try to get him to stay there all afternoon so I can go into work. Tree House has gotten creative with fund-raising for us. They are so great.

There are a few different fund-raisers going on. People ask us if it's ok. It's a really strange feeling to have people raising funds for us. It will be very helpful since I'm losing a lot of pay and we've got co-pays and co-insurance so I'm very thankful, but it doesn't feel normal. I hope everyone knows how thankful we are for everything.

I notice a few changes in him. He's really tired and he's cold all the time. He's also thirsty a lot and his appetite has really grown. I can't tell how much is the cancer and how much is the medicine. He may get more chemo this week. We go in for labs tomorrow morning which will determine if he'll get more treatments this week.

Going Home

2010-10-02T22:49:00.005-05:00

Yesterday (Friday) Joey got another type of chemo. This one they injected into his thigh - he really didn't like it. They had to watch him for a while after and his blood pressure dropped a bit. They started giving him something in his line to increase it, which worked. Because of this, we had to stay until about 5:00 before being discharged.

Before we left, we learned how to change the dressing on Joey's central line, which has to be done every day. We also got the bag full of medical supplies for the next 30 days. I'm sure it will become easy, but it makes me a little nervous now. They say that we can expect the line to get infected at some time no matter how well we clean it.

It was like moving day, and we almost couldn't fit it all in the car. We came home to a wonderfully clean house - it was so nice. We are very thankful to everyone who helped out with our house - lots of cleaning and decorating. It all looks great. We actually got to have a home-cooked meal thanks to Erin and her awesome lasagna.

This morning, we went out into public for the first time since the diagnosis. It was a little strange being out in the real world after being so consumed by this for the last 9 days. We went to a pancake feed fundraiser for the Leukemia walk. We went last year and wanted to be sure to go again to meet the family of a teenage girl who just finished her 2.5 year treatment for ALL. It was good getting to talk to her and her parents. We also met the organizer of the walk who encouraged us to come and meet other families.

Katherine walked in the parade at the Goddard Fall Festival after breakfast. We just put Joey in a stroller and wrapped him up in a blanket to watch.

It was apparently all too much for Joey. He fell asleep in the car and slept for about 4 hours after we got home.

Joey, waiting for the car to go home

Watching the parade

Katherine came up to give Joey some candy

Day #8

2010-09-30T23:06:00.003-05:00

No chemo again today - just several other medicines, resting, and watching for fevers, etc. He spent some time in the playroom today and seems to be moving around better.

I went into work today to check in and talk about the plan going forward. I'll probably be changing my role at work a bit to make it easier for me to take care of Joey through this long process. I'm very blessed that my boss is so understanding and willing to work with me. If I had an inflexible job, this would be much harder. I'm going to start working again next week, although my location may be flexible.

Joey Skyped with his daycare class again. He got to watch circle time and see his monkey in his chair. We tried to stay busy this afternoon with books, coloring, DS, and toys, but he is really getting sick of being here.

Chad and Candice stayed with Joey tonight so Jon and I could go out with Katherine. She has gotten very little attention from us this past week and we thought she really needed it. We talked about Joey a little bit. She asked us who made Joey sick - God or the devil. These are things that are difficult for anyone to understand and are very hard to explain to a child.

His labs were stable today - not much different from today except he platelets are still dropping. He may need a platelet transfusion tomorrow. He'll be getting some chemo injected into his leg in the morning. As long as he doesn't have a reaction and everything else looks good, we should be going home in the late afternoon. Joey has already let us know that he'll be sleeping with us at home. I think it's going to be hard for him to be away from us after this.

Playing but grumpy

Watching a movie with Uncle Chad

Watching circle time at Tree House

Day #7

2010-09-29T23:38:00.003-05:00

Today was mostly a maintain day. He's still on several medicines and a fluid drip, but no chemo.

He took his first shower since being admitted (rather than a bath). He loves taking showers and I'm thankful that his central line doesn't keep him from being able to have them.

He was a little grumpier and more shy today. He didn't want to talk much to many of his visitors. His labs looked "good" today. Good is relative at this point, but they were good compared to what is expected. They are showing that the chemo is already doing it's job, which is very comforting. He also didn't get sick again today - such a blessing and relief. He didn't eat much, but he played and acted a lot like himself.

We got Skype set up and he was able to see his class. It was so cute to see their little faces all crowded around the computer. He didn't talk to them much because he was being really shy, but he did show them his central line. They had his monkey and made sure that he participated in everything they did.

We finally got him to go play in the playroom. Once he got there, he had a lot of fun. It's good to get him out of his room for a little while. He has started getting used to having his "tree" follow him around everywhere.

His grandma came to stay with him tonight so that Jon and I could have some time with our Bible study group in a separate room. It was good to get out and spend some time with them even though we were only a few rooms down. He was so tired that he fell asleep before 8:00.

In the playroom

Playing Jenga with Grandma

Cousins

Computer games

On Skype with his class at Tree House

Day #6

2010-09-28T22:40:00.005-05:00

I'm posting twice today since I didn't post anything last night.

Our day started with a visit from Dr. Rosen (the oncologist) with the results from the bone marrow aspiration. They confirmed that he has ALL type B. They also confirmed that there are no cancer cells in his spinal fluid. Both of these are good things. ALL is the most common and the easiest to cure of the types of leukemia. There are other details that I'm sure the doctor knows but we don't. I told him that I don't want information from him on the prognosis. I'm more concerned with understanding the treatment plan and assuming that it will lead to a cure. Starting today, his is in a 28-day induction treatment period. The chemo will be fairly intense, with the goal to have 99% of the cancer cells gone after the 28 days. He will then continue through the rest of the treatment - the total plan is 2 1/2 years. We'll need to put off some things that we had scheduled for October like his birthday party and visits to Grandma's new lake house. We'll just postpone them until later.

His back was really sore today and he had about 45 minutes when he said his tummy hurt. We tried to go down to the playroom, but he wanted to go back to the room before we got down the hall. He spent most of the day in his bed and hosted visitors. His friend, Kyle, from church came to see him and played for a while. He also watched a couple of movies.

In late afternoon, he started the induction therapy. They gave him a steroid pill (which he'll get 2 every day for the 28 days), and a chemo drip through his central line. There are signs on his hospital door that warn about the hazardous chemicals. They have to double-bag his dirty linens and anyone who may come into contact with his bodily fluids has to wear special chemo-proof gloves. It's really strange to think that everyone has to be protected from the stuff that is being injected into my child. He is still on a fluid drip and has potty about every 30 minutes.

His Aunt Juli brought him a special package. It's from There's a Monkey in my Chair (http://www.monkeyinmychair.org/ ). It's an organization started by a mom whose daughter had brain cancer. The concept is that the monkey goes to school on the days the sick child can't. Katherine will be taking Joey's monkey to Tree House tomorrow.

He had some friends and his sister visit tonight. He was very sick of being in his room, so we went to the floor lobby. Whenever he leaves his room, he now has to wear a mask. Since he can't walk well yet and has to pull around his IV, we put him in a wagon to pull him to the lobby. He was still able to have fun and eat a chocolate shake from his grandpa.

I noticed a little boy walking around the floor who obviously has cancer so I introduced myself to his mom. He just turned 5 in July and was diagnosed with ALL last Feb. He also has the same doctor. I think we'll be getting to know him and his family well. He is the boy of the year for the Wichita chapter Leukemia Society this year. He is here this week because he was having headaches and his platelets are really low - getting more blood transfusions. It was a picture for me of what our next year may be like. His mom is very upbeat. I may try to spend some time talking to her tomorrow.

We may be going home on Friday afternoon. I'm ready to be home, but I'm also nervous. While at the hospital, I know he's safe. I'm not sure what it's going to be like to live with this at home. The doctor said he may be able to go back to preschool next week, but I'm not sure he knows that Joey is usually there full time. I'm not sure how I feel about it. It's going to be hard to keep his life as normal as possible while I'm also very protective of him.

We are feeling pretty good most of the time, which can only be a result of the multitude of prayers for us. I've never experienced anything close to this before - being part of something so painful and scary but also something so sweet as seeing the body of Christ come together to lift up one little boy.

Playing checkers with Amber

His monkey

Playing with Kyle

Day #5

2010-09-28T09:26:00.006-05:00

The day started early with Joey being taken upstairs for his procedures. They sedated him until he feel asleep (which took about 10 seconds) and performed the bone marrow aspiration and spinal tap. They also injected chemo directly into his spinal fluid. They had a difficult time getting the bone marrow out because the cells were so tightly packed and had to go to a bigger needle but they eventually got it. He slept for about 2 hours. When he woke up he said he felt good and played "Angry Birds" on Pastor Richards phone. We got back to our normal room around noon and just hung out the rest of the day.

His back was pretty sore, so he couldn't walk around, but he felt ok as long as he was sitting. He's on IV fluids so he has to potty a lot and had to get in and out of bed for that, but he was determined to get out by himself rather than have us help him. Luckily, he didn't get sick at all. He watched some movies, played his DSi, and had some visitors throughout the day. My awesome friend, Celest, convinced me to leave the hospital for the first time and go to Starbucks.

He is starting to get a little grumpier, but is still doing really good. When we were getting him settled down for the night, he got upset at us for not turning the TV channel to what he wanted and he started to have his first fit since we've been here. It quickly turned from a 4-yr-old fit to a real cry. He laid his head on Jon's lap and just cried for about 10 minutes. We've never seen him cry like that before. It sounded like pent-up frustration coming out. Once he was done, everything was fine. He just needed to get some emotion out of him. It was hard to watch, but I also knew it was a good thing for him to be able to do.

Joey got ahold of the camera...

Day #4

2010-09-26T23:34:00.008-05:00

Again, there was little action today regarding tests and treatments. They gave him one drug that will keep the cells from forming into tumors and also keep his uric acid down once the chemo starts, but there were no side effects. He's getting IV fluids right now that will keep going while he sleeps to get him nice and hydrated for the morning. I'm guessing we'll be up several times tonight for potty breaks.

He felt great again today and spent all day playing. He had several visitors and played in the playroom with his cousins and some friends. He also got some great toys and movies (he watched 4 Veggie Tales movies tonight).

He asked a lot of questions today - some of the same questions over and over. The first words he said when he woke up this morning was "Do I get to home today? Tomorrow?" He asked several times "Why do I have to have surgery again?" We explain it to him, but it's just not something he understands. When he thinks of being sick, he things of something that he does (like coughing). He doesn't understand being sick when you feel just fine. It's actually a blessing that he doesn't understand. If he understood it, he would be scared.

First thing tomorrow morning, he goes up for sedation and will be in procedures and recovery much of the morning. They will perform a bone marrow biopsy (in his hip), a spinal tap, and put some chemo directly into his spine. The biopsy will give them more information about the cancer cells so the specific treatment can be determined. The spinal tap is to check if there are any cancer cells in his spinal fluid - when the go into the spinal fluid, they can travel into the brain. He has no symptoms that this has happened. The chemo into the spine is to prevent them from going there or kill them if they already have. They will give him some anti-nausa medicine and pain meds, but he may still feel sick and be sore in the hip. All kids react differently, so we'll just have to wait and see how well he tolerates it. One of my prayers through all of his treatment is that he not be miserably sick. Especially since he feels fine now, I just hate the thought of making him feel bad, even though I know it has to be done.

The support, love, prayers, help, etc that we've been shown already is just amazing. I'm not sure how to describe how grateful we are. It feel a little strange to be the recipient of it and know that we'll never be able to give back all we've been given. I'll probably say it over and over, but THANK YOU to everyone. We are trusting in God to get us through this and know He is making it happen by using the people around us.

The foam gets a little messy...

Katherine made him a poster for his room

Playing with his new fire truck (he got a couple of different trucks today)

Showing off his Hickman line

Day #3

2010-09-25T23:45:00.005-05:00

Since its the weekend, there wasn't much going on today with tests and treatments.

Joey always says that he wants to be a fireman (like his Uncle Chad). Chad and 2 other firefighters came to see Joey in full gear. He was a little overwhelmed when they first came in but he got better as it went on. They gave him is own truck 3 (their truck) t-shirt and he got to go outside to see the truck itself. (It was the first time he or I had been outside since Thursday morning.) He climbed in and they showed him some of their equipment. He even got to play with the heat-sensing camera. Katherine pulled the horn and the cars on Hillside started pulling over - pretty funny.

His blood tests were better because of the transfusions from the last 2 days, so he didn't have any more today. His white blood count was lower than yesterday but only slightly. He still has no fevers and feels pretty good most of the time. He slept about 2 hours in the afternoon and was a little grumpy when he got up.

Shawna brought me a binder and recommended that I get copies of the labs, etc to put in it so I can track everything as we go. I never would have thought to do that but it helps me feel like I can better understand what's going on with him. The binder will probably be packed full in a couple of years.

This is a bit gross, but too funny not to share. When Joey goes potty, he has to do it in a plastic container so they can track the amount of urine against the amount of fluid he drinks. He needs someone to help him so he doesn't make a mess. Jon was helping him, but didn't quite get the container on right and instead pushed "everything" up. Joey immediatly started going and it shot straight up into Jon's face. Joey loved it.

Thank you, everyone, who has been helping us out though this. Many of you have brought snacks, toys, meals, or anything else we need, and we really appreciate it.

Joey with Uncle Chad

Playing with the heat camera and testing the temperature in his mouth.

Playing each other in Mario Cart

Day #2

2010-09-24T23:43:00.006-05:00

Playing with the surgeon's glasses

He loved bath time as usual but had a hard time keeping his IV dry.

Hangin out

Playing with Jackson - notice the line of blood as he was getting his transfusion. He thought it was pretty cool to show everyone.

Katherine really wanted to be with him.

Today went as good as could be expected. Joey woke up feeling great. We took him for a walk around the floor just to let him get out of bed, and he ended up running around. He took a bath and was as wild as ever. He said "I feel a lot better. I think I can play outside longer now." The blood transfusion really perked him up. While I washed his hair, I started to explain that he won't have to worry about washing it for a while. He was pretty excited about that.

We met his oncologist today. He is highly recommended and I like him already. He is very concerned with treating all of Joey. This includes making sure he gets as normal life as possible. I'm not sure what this means yet, but it's encouraging.

His friend, Jackson, came to visit. Some awesome people from work took up a collection for him and bought him lots of stuff to play with and his own DSi. He loves it. Even though he was getting another blood transfusion, he got down on the floor and played with Jackson.

We had some other visitors who helped us pass the first couple of hours of the afternoon. At about 3:00, they took him down for surgery to install a central line. His platelets are low, so they gave him more on his way down to ensure no bleeding issues. He was very brave when they took him into the OR without us. He gave me one scared look and then let go of my hand quietly. The surgery was a success. It took him a little while to wake up, but he slowly came back to being himself.

He had lots of visitors later in the evening after he woke up all of the way. They spoiled him with fun gifts. He said that his chest hurt a few times (the location of the central line), so he had a dose of morphine. He also go another blood transfusion.

Katherine wanted to stay with us so we decided to let her sleep here tonight. Her class made him a get well book that was very touching.

I continue to be amazed at the support we've received. Because of the wonderful people, Joey is actually enjoying himself most of the time.

I felt much more calm today, with only random bursts of panic. With all of the support, I almost start to forget why we're here and then I think, "Oh yeah, my son has cancer", which usually sets off the panic. I know that God is in control and that he loves Joey even more than we do. I know this is true, but I'm not sure that I completely understand it or remember it all of the time.

The Day Our Lives Changed

2010-09-24T23:31:00.002-05:00

Here is the story: I noticed that Joey started looking pale about 3 weeks ago, but I wasn't sure if it was my imagination and only mentioned it to Jon. About a week after that, his daycare teachers said he looked pale and a little yellow. I started watching him very closely and examing his whole body, but didn't see anything else unusual. I decided to watch it for a week or so and then call the doctor.
Two days ago, I called the doctor who called in labs directives for a CBC and liver check. We didn't take him in yet because he had his regular allergy checkup scheduled - I thought maybe he was just not feeling well from allergies. Yesterday, his daycare called to say that he was really tired and we sleeping all day - this is when I really started to get worried. When I took him to see the allergy doctor this morning, she was concerned as soon as she looked at him. She recommended we do the labs right then and that I should wait there for the results. When they came back, they looked very bad and indicated luekemia, so they immediately admitted him to the hospital.

Jon and I were in complete shock. We immediately thought the worst. When that doctor asked if we needed anything, Jon said prayer. She got down on her knees in the room and prayed for us. Joey didn't know what was going on and starting asking questions like "why are you crying if I'm just sick?" and "how did I get sick?" and "how can I be sick if I'm not coughing?" Those are not easy questions to answer for a 4-yr-old.

Once in the hospital, they said they were 95% sure it was leukemia but started doing other tests. They needed to get an IV in, but his little veins kept collapsing. It took 6 pokes and lots of digging, but they finally got it. That was the hardest part of the day for Joey.

They gave him a blood transfusion and his color started coming back almost immediately.

They did a CT of his abdomin because they were a bit concered that he may have something there. So far, the preliminary results are that it was clear (a big relief).

The preliminary pathology results say that he has acute lymphoblastic leukemia, which is the most common and also most curable form. They will do a bone marrow biopsy on Monday to get more details so they can determine the best method of chemo to treat him with. He will get a central line put in tomorrow which willl stay in through the course of treatment. He may start chemo this weekend, or they may wait until after the biopsy and start it Monday or Tuesday. He'll then be started on a course for chemo for the next 18-24 months or as long as it takes to cure it.
There are many things that could be worse - it could have spread and created tumors, it could be the type that is harder to treat, he could feel really sick right now or could have gotten an infection (he has almost no immune system right now). They have assured us that this is curable. It's not an easy road to get there, but one I'll gladly go down for him.

I'm a little overwhelmed by all of the support we've already gotten. I don't know how I would have made it through the day without all of the people who came to support us. I was basketcase most of the time, but am much more calm tonight.
Reading all of the Facebook posts was calming (to know so many people are praying), but also very surreal that those posts are actually about us. This is not something that I ever expected to go though. Our lives have been changed forever, but hopefully it will be change for the good once this is over and Joey is healed.
He feels good, so please pray that he'll continue to feel good and won't get terribly sick from the chemo or have too much pain from the biopsy.
I'll continue to post updates as I can.
Thank you!
Angie

Easter 2010

2010-06-04T21:11:00.004-05:00

Easter Sunday morning in their Easter clothes.

All the cousins at Tanganika.

Easter egg hunt with the cousins.

Sam

2010-06-04T21:04:00.003-05:00

We decided to adopt a dog who needed a home. Sam is 5 and is very sweet, although he had a little bit of a hard time at first. He also tore his ACL after a few weeks and required surgery and 2 months of recuperation.

Sam is the lighter one.

Grandma's Birthday

2010-06-04T21:00:00.003-05:00

In March, we celebrated Mom/Grandma's birthday by going to the Garden Show and then having dinner. The kids all got their faces painted at the show.

February 2010

2010-03-19T20:32:00.005-05:00

Kennedie's birthday party at Pure Entertainment.

Getting ready to go to the Father/Daughter dance.

Joey's V-Day party.

January 2010

2010-03-19T20:23:00.003-05:00

Joey started gymnastics class.

Katherine went to a birthday party where they all got makeovers.

The kids got to sled a few times this month.