Tuesday, November 30, 2010

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.

Wednesday, November 24, 2010

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!

Monday, November 22, 2010

New Treatments

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

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

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.  

Thursday, November 11, 2010


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
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
and many others.

Sunday, November 7, 2010

Good News / Bad News

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.

Wednesday, November 3, 2010

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 :)

Monday, November 1, 2010

Out of PICU

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.