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

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

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

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

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...

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. 

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...

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.

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.

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. 

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.

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

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