Kyle Ledy

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Kyle Ledy is a young boy  in Michigan whose family is in the UCG. He has been fighting cancer for the  past seven years. His grandfather, Duane Ledy, a UCG elder, died of cancer at about the same time little Kyle was diagnosed. He has undergone both conventional and experimental cancer therapies for some time now.

UPDATED July 19, 2007

From Steve Shafer, pastor, Flint/Saginaw/Wolverine, MI: 

Kyle Ledy, along with his parents, Jon and Beth, from the Saginaw, Michigan, congregation, would appreciate your prayers on Kyle’s behalf.  Kyle continues to battle cancer with tumors in his brain and on his spine.  One of the tumors in his brain has now grown to the size of a golf ball.  It is beginning to affect the vision in his left eye and he has been experiencing headaches.  Doctors from the children’s cancer center at the University of Michigan – Ann Arbor have recommended surgery to remove this tumor with some follow-up radiation.  Kyle will also continue with his current medication that seems to have stabilized the remaining tumors.  Your prayers over the years are certainly appreciated.  It is evident that God has intervened on his behalf.  Please pray that God will continue to guide them to the right decisions and for encouragement for the whole family. 

        Kyle Ledy
        1214 Oakdale Circle E.
        Freeland
, MI  48623


UPDATED February 1, 2007

From Steve Shafer, pastor, Flint/Saginaw/Wolverine, MI:

The FDA has now given Kyle Ledy permission to go back on his oral medication, which he is doing.  He does have two current complications.  One, he has an infection where the catheter was taken out.  The second complication is that the needed dosage of the oral medication now makes him nauseous, which makes it very difficult for him to take the amount he needs to keep his tumors in check.  Please pray for God to heal his infection and that he will be able to take the needed dosage without feeling sick all the time.  Thank you all very much for your prayers.  It definitely appears they were answered. 

        1214 Oakdale Circle E.
        Freeland
, MI 48623


UPDATED January 2, 2007

From Steve Shafer, pastor, Flint/Saginaw/Wolverine, MI:

Kyle once again needs our prayers.  The port they surgically inserted a couple of weeks ago closed.  They again surgically created another port in another location, further away from his heart.  They want it as close to his heart as possible, as that will maximize the blood flow, which in turn will optimize the effect of the medication.  They inserted a catheter in that port, which worked for only a very short time, before it closed also.  They have left the catheter in that second location for now, as they will try to open it again this coming week and then try to move the catheter past the area of restriction and closer to the heart and to the an area of greater blood flow.  The medication tends to close the veins where the port is located so that the medication will not flow into his veins properly.  Right now, Kyle is not on any medication whatsoever, until they can correct this problem.  The oral medication will not be effective until they can get the original medication into his system for at least six months to a year.  The original medication will stop the growth of the tumors to where the oral medication can then keep that situation stable from there.  Kyle had another MRI last week, which revealed the one tumor in his brain had grown by 3% since being off the medication.  So, please pray they will be able to correct the problem so that a port can stay open indefinitely.  Kyle needs God’s intervention.  Kyle and his family remain positive and they are very thankful for our prayers.


UPDATED December 17, 2006

From Steve Shafer, pastor, Flint/Saginaw /Wolverine, MI:

Last week doctors were successful in surgically creating a port for a catheter for Kyle.  So, he will now be able to receive his original medication which kept his tumors stable for many years.  Thank you all very much for your prayers, cards and notes of encouragement.  The family greatly appreciated your concern and prayerful support.
 


UPDATED December 9, 2006

From Steve Shafer, pastor, Flint/Saginaw/Wolverine, MI:

Kyle Ledy came home from Houston this past Friday, December 1. They were not able to find a vein in which to insert a port for a catheter. Currently, Kyle is not taking any medication whatsoever. The next step is to try to locate a surgeon who might be able to surgically create a port for a catheter. Since they can pursue that course of action here in Michigan, there was no reason to stay in Houston. Kyle and his family continue to have a positive outlook, trusting that God will work things out according to His will. They very much appreciate your prayers on Kyle’s behalf, along with the cards and notes of encouragement. Please continue to pray for Kyle and especially pray that they will be able to find a surgeon who would be able to surgically create a port, so he can receive his needed medication to keep his tumors in check.
 


UPDATED November 28, 2006

From Steve Shafer, pastor, Flint/Saginaw/Wolverine, MI:

Your prayers are requested for Kyle Ledy.  As many of you aware, Kyle, age 16, has been in a battle with cancer for over 10 years.  He has tumors in his brain and on his spine.  For several years these tumors have been stable – having neither grown nor diminished in size.  About 6 months ago, the FDA required that he change medication.  Over the past few weeks Kyle has not been feeling well and was unable to attend school on several occasions.  An MRI done last week shows that one of the tumors in his brain has grown 60% since the last tests.  The doctors believe this is why he has not been feeling well.

Kyle and his parents, Jon and Beth, are now in Texas working with doctors to get him back on his original medication.  Kyle was in surgery for 3 hours getting a port put in that will allow him to take his medication.  This is normally a one-half-hour procedure.  They had a difficult time finding a vein that would work.  Unfortunately, it is very painful when the medication is running and they are not able to give him the proper dose. 

After administering three doses of the original medication, the port closed and they are having a great deal of difficulty finding a vein in which to open another port.  If they are not successful, there is nothing more they can do and his tumors will continue to grow, greatly threatening his life.  Please pray for God’s intervention that they will be able to open a port, so he can get back on his original medication.

        Kyle Ledy
        1214 Oakdale Circle E.
        Freeland
, MI  48623 


UPDATED March 4, 2006

Jon and Beth Ledy would like to ask for your prayers for their 15-year-old son, Kyle. He was diagnosed at the age of 6 with brain cancer, which had spread to his spine. His tumors have been stable for quite a while, but his last MRI showed that one of the tumors had grown by over 30%, while the rest have remained stable. Obviously, their desire is that the tumors disappear.  He is being treated through the Burzynski Clinic in Houston. Kyle has been able to handle his medication, for the most part, though larger doses tend to make him nauseated. However, he does need a higher dosage to help combat the tumors. The family is extremely thankful for the prayers that have been given on Kyle's behalf during the ongoing trial.  They have truly made a difference. 
 
        1214 Oakdale Circle E.
        Freeland, MI  48623


UPDATED August 13, 2004

Dear Mr. Kubik,

Here is an update on Kyle Ledy with permission from the writer, Jana Clark. Thanks for all you do for the brethren. I check the Prayer Page morning & night. I am sure others do as well.

With Christian love,
Donna Wamser

----- Original Message -----
From: <janaclark@juno.com
To: <cardlady@wmni.net
Sent: Monday, August 09, 2004 2:11 PM
Subject: Re: Kyle Ledy

Hi Donna,

Sorry I didn't get back to you sooner. I just got on to check my mail.

Kyle is doing great. His tumors continue to either remain stable or slowly shrink. He is still dealing with them, but it is sometimes hard to remember he has them. He takes 40+ pills a day, which at times give him an upset stomach, but he has been able to live an active, normal 14-year-old boy's life. He plays basketball and baseball. He would love to play football, but that's not allowed. He's growing like a weed. He's about 5'8" now and still growing. He's going to be really tall, like his dad (he's 6'4"!). He will be going into 8th grade and seems to enjoy school.

I'm sorry we don't update more, but I guess when things are going well, thankfully all we can say is he's doing great. We all still appreciate the prayers of everyone and know that God is answering them. A boy from Freeland who was diagnosed with leukemia the same year that Kyle was diagnosed with his cancer just died last week. It is really heartbreaking to hear things like that and it just makes us that much more grateful that Kyle is doing so well. Thanks for continuing to think of him and I will try to send updates more often. He still goes in for MRI's every 3 months. He will be due for more next month. Please feel free to send this on to anyone else you know who would be interested in an update.

Thanks for writing,

Jana
 


UPDATED May 16, 2001

From Roland Clark, elder, Redlands, CA:

As readers may recall, Kyle Ledy had tumors on his spine and in his brain. Conventional treatment would have been radiation and chemotherapy, with about a zero chance of success. However, he began an unorthodox treatment with a doctor in Texas who was having quite a bit of success. That was about 4 years ago. Kyle is now nearly 11 years old. It has been very difficult at times taking the medication, and his activities were drastically restricted. But, now he is on an oral form, and it really improved his situation.

The best news is that he is now back in school every day, playing little league, and acting like any other 11 year old. He gets an MRI every three months. One tumor is no longer visible, others are shrinking or remain stable.

Needless to say, everyone is extremely pleased.  Until all of the tumors are gone, prayers are much appreciated.

Hit Counter


UPDATED March 10, 2000

Kyle went in for surgery on Tuesday to replace his catheter. It had to be reinserted in the same vein, but through a different incision. He went through it well , but was in a lot of pain afterward. Early this morning, however, he woke up with a temp of 105 and redness at the incision site. They had noticed the redness earlier in the evening, but thought it was a reaction to the plastic pad the doctors put over the incision. When he developed the fever, they took him into ER, at about 2  a.m. My mom was able to go stay with Derek and get him to school this morning. Jon called at about 1 p.m. today and said they were finally home and that Kyle does have an infection. They are really hoping it's just at the incision and hasn't reached his bloodstream. Kyle was given a dose of antibiotics at about 5:30 this morning and was able to have a couple doses before they released him. The fever went down almost immediately and he is feeling better. Jon and Beth will be able to administer the rest of the medicine at home. They could really use your prayers that this clears up quickly and especially that there won't be any more complications with his catheter. They've basically run out of veins to put it in. It has to go directly into his heart and he has so much scar tissue built up in the other veins there isn't any other place to put it. Hopefully, he will get over this latest setback and get on his cancer meds quickly. Thank you for your messages and continued prayers.

Jana


UPDATED March 7, 2000

This message is from Craig and Jana Clark, Kyle's uncle and aunt:

Jon and Beth have asked for everyone to pray for Kyle. He has had some problems with his catheter. On Tuesday they are going to have to remove it and then try to find another place to put one in. Since they have had to do this several times already they are not sure where they will be able to place another one. They are going to have to do some exploration in order to locate a vein that they can use. We will let you know what happens.

Thanks,

Craig   

    Kyle Ledy
    1214 Oakdale Circle East
    Freeland, MI  48623. 


UPDATED January 23, 2000

Hi,

Just a quick update to let you know that Kyle is home and doing well. The headaches he developed on Sunday evening were due to residual blood in the spinal fluid (which flows between the brain and spine). The tumors were no longer bleeding, but until the blood was absorbed by his system, he would have the headaches. He no longer has the problems with balance or vision; but with the bad headaches, Jon and Beth felt they ought to get him back in to Ann Arbor. They came home yesterday and Kyle was well enough to call and ask if Brandon could come over after school today and play. Kids sure seem to bounce back quickly. If only the rest of us could, eh? Thanks again for the prayers and concern. We know they're being answered.

Jana


UPDATED January 11, 2000

I talked to Jana last night and she didn't know any more than what she wrote in this message. The thing they were most worried about I think was the low platelet count and the pain. They are still encouraged that the tumors are breaking down. Jana said the doctors gave Kyle the maximum amount of morphine that they could and it didn't help. The doctors said that if they gave him more, his heart would stop. So, they gave him demerol and that helped. They have had a really rough week. Please continue to pray for them.

Janine


UPDATED January 9, 2000

Hi

We've hit lows and highs today. This morning we got a call saying that Kyle had been taken to the Univ of MI hospital in Ann Arbor and waited hours in the ER. They did a CT scan and didn't find anything. Early this morning they did an MRI and found that one of the tumors was bleeding, causing the head and earaches. The neurosurgeon and other doctors were uncertain how to handle it. They were coordinating things with the Burzynski Clinic so needed input from the doctors down there. 

They (UM) don't see things like this too often with the chemo and radiation therapy they normally do. That was how things stood from our end until just a few minutes ago (10:00 p.m.). Anyway, we weren't sure if it would require surgery or what the deal was. Kyle's legs and back were hurting and no one had gotten much sleep last night. Well, we just got a call that said they finally realized the cause of the bleeding was the tumor breaking down. This is wonderful news. Kyle is now feeling great; he was even in the playroom today for awhile. The doctors and Jon and Beth are very optimistic and excited. They will be lessening his meds dosage by a small amount because it's not safe for the tumors to break down too quickly. The only concern now is that his white platelets are still very low. The doctors hope to get them up to an acceptable level by tomorrow. If that happens, he can come home. If not, he'll have to stay until they get the level where they want it. We truly thank you for your prayers and concern. We know God hears and answers.

Jana


UPDATED January 7, 2000

I received this e-mail from Kyle's aunt, Jana Clark (janaclark@juno.com). I would appreciate it if you would post it as an update to Kyle's prayer request. Thanks so much. 

Janine Krueger

-------------------

Kyle isn't doing very well right now and could really use everyone's prayers. He just got a call telling us that he's very dizzy, has an earache and headache, plus his white blood count is very low. He had a shot to help the blood count improve, but they aren't sure yet of the reason for the other problems. His last MRI showed that one of the tumors had grown some, or changed shape, but the doctors said that's not unusual, so we weren't terribly worried. Yet they now say the cause of his problems may be the tumor pressing on something. Depending on the cause, the doctors may have to put a shunt in to release the pressure. It also may be due to a viral infection, like the flu. It's really been bad this year. He's not running a fever, so everything is still unknown. 

As of 3:15 p.m. today, they were still waiting to hear where to take him. The doctors in Houston are aware of the problem as is UM Hospital in Ann Arbor. They may have to take him to Ann Arbor or the doctors may want him to be seen locally. We will send an update on this as soon as we hear the cause. He's been very tired lately, but his medication dosage had been increased to the highest level he's every been on just recently. 

When he's on the meds, he gets very tired so we didn't think much of it, but it could have been part of this problem too. Jon and Beth really appreciate all the prayers and cards that have been sent and are very grateful for your continued attention in this matter. 

Thanks,

Jana


UPDATED April 24, 1999

Here's an update from Jana Clark about her nephew, Kyle Ledy, who has cancer. I think he's about 8 years old now.

Janine

-----------------------

Sorry it's been so long since I've sent an update on Kyle. He's been doing just great until recently. The latest scans showed that his spinal tumors had definitely shrunk and most tumors in his brain had, with one being slightly larger. Overall, good news, I'd say. However, this last week, he has been fighting a fever which once again turned out to be staph infection.  He did have a reaction to the antibiotic he is on so he is now in ICU in Saginaw. He was only supposed to be in one night, but as happens many times, his stay has been lengthened.  He won't  get out until at least Monday.

The doctors have decided that they aren't going to mess around with the multiple series of antibiotics and decided to remove the catheter tomorrow. He will have to be in the hospital because of the IV's until they put in a new catheter. The earliest that will happen is Monday. They need to get the infection under control first. Removing the catheter will take care of the source, but they have to look at all the factors. He's a very depressed little boy right now and the whole family certainly appreciate the thoughts and prayers of everyone at this time.  Cards would be greatly appreciated as they have been all along.  His home address is:

    Kyle Ledy
    1214 Oakdale Circle East
    Freeland, MI  48623. 



UPDATED February 17, 1999

Just thought I would send an update since it has been awhile since the last one.   They went yesterday for the results on the latest sets of MRIs. The tumors appear to be stable. Jon and Beth were a little disappointed at first, because they were hoping for a reduction. However, the UM doctors were thrilled. It has been a year and a half since he was rediagnosed and there has been no growth. In fact, since that time, there was a small reduction in the tumors. Considering all of the other health problems Kyle has been dealing with this past few months (staph infection, colds, etc.), we're very encouraged by his status. He seems to be catching anything that's going around, and this winter has been full of all sorts of things (Brandon's been home for over a week with strep throat).  Kyle has caught the upper respiratory virus that's widespread here. And of course, everytime he gets sick, he goes off his medication. So no tumor growth is a good sign. We're hoping that if he can get on a steady course of the meds, we'll see some reduction.

On another note, with Kyle.  The Make-A-Wish foundation is sending Jon, Beth, Kyle and Derek to a dude ranch in Arizona. For those who don't know, Make-A-Wish is a foundation that makes one dream of children with terminal or life-threatening diseases   come true.  Many choose Disneyland, some ask for computers, some get swimming pools.  Kyle's true love is horses, so he and his family will spend a week at this ranch. I guess this ranch has dealt with the M-A-W foundation in the past and are equipped to deal with the special needs of these children.  The neat part for Kyle is that he will have his "own" horse for the week and he will have the responsibility of feeding it, brushing it, in addition to the fun part of riding it for the time he is there.  They leave on Feb 24, so we're all praying for good weather for them, and that he remains healthy.

Thank you for your continued prayers for the whole family. They mean more than you can know, and we are seeing the answers every day.


UPDATED December 2, 1998

I've been meaning to get this out for a week, but with Thanksgiving, I didn't get around to it. Anyway, Kyle's staph infection did come back, again. They put him back on antibiotics, and removed the catheter yesterday. This means he is off his cancer meds.   This Friday he will undergo the surgery to have it replaced. The delay was to give his veins a chance to heal. They can't reinsert the catheter into the same location right away, if at all.  This is the third catheter he will have and they are hoping to put the new one in the vein used in the first go through. Also, I wasn't sure if I told you that the insurance rejected their appeal. They said they only pay for "safe and effective procedures."  Jon and Beth's last course of action  is to take it to the state's insurance review board. They can determine whether or not the insurance co. has to pay for the procedures. Since they will pay for chemo and radiation which are certainly NOT "safe and effective," we hope this will open the door for their case. Jon and Beth have a little less than 60 days to appeal this to the state, so will keep you informed as to what goes on.


Updated November 11, 1998

This is an update on Kyle Ledy, sent to me by his aunt, Jana Clark.

I've been meaning to send this out, but better late than never. I was waiting for the results of the latest staph culture.  Anyway, the cultures have come back negative so it looks like the infection is gone. His catheter had been working great but he recently had an oclusion in the line and it's been working so-so since. He has blood drawn out through it, as well as having medication go in through it, so it's important that it works right. If it doesn't, he can't draw blood and has to get poked and you can imagine how much an 8-year-old likes that.

The MRI scans were stable for both spine and brain tumors. Considering the amount of time he's been off his meds for infection and such, it's really encouraging. If they can get him up to full dosage for any length of time, there could be wonderful results. Of course, everyone's prayers has made the biggest difference. Kyle seems to be coping with the routine better than he ever has. It's a lot of work for Jon and Beth, and they finally have a routine down and seem to be very comfortable with dispensing the meds and with all of the accompanying work that goes with it. Kyle has lost a tremendous amount of weight, all from fluid build-up, around 25 lbs.,  and can get around much better.

We would like to ask for you to add one more item to your prayer list. Their insurance company up to this time has refused them any coverage with the treatments. Their insurance agent, a wonderfully dedicated person, has been working hard to get the insurance co.   to change their minds and pay for some, if not all of the treatment costs.
The company has agreed to review the situation and has asked for documentation. Jon & Beth could really use your prayers that the insurance co.--Blue Cross of Michigan--would agree to cover the costs. There is a precedent for this as other companies, including Blue Cross of Minnesota,  have covered this treatment for other patients at the clinic.

We really appreciate your prayers and concern. It's made a big difference for all of us to know so many people truly care, and know that God does hear and answer.

Thanks,
Jana


Updated September 4, 1998

I just heard tonight that Kyle is still fighting the staph infection. He was fine earlier today, but Beth said his fever came back and he began hallucinating. He's being put back on antibiotics. They had asked the doctor to give him a longer series, but the doctor didn't feel it was necessary. In hindsight, he now agrees he should have. Very frustrating to go through this again. They were very concerned especially since this is the same type of thing that happened last November when he had that infection. They didn't have him on the meds long enough and didn't get
rid of it. The really scary thing is it just becomes more resistant to the antibiotics. Jon and Beth were hoping to head up to Mackinaw City with the boys for a mini vacation this weekend. They just wanted to do something "normal" and fun. There is an old Revolutionary War fort (restored) up there, plus it's a great tourist trap. Just the kind of place kids (and adults like me) love. Guess they'll have to do it another time.

We all really appreciate the prayers and encouragement. We sure don't know how we'd do it without such wonderful support in that way. It really has been a blessing.

                    P.O. Box 397
                    Freeland, MI 48623-0397

-- From Jana Clark


Updated August 30, 1998

From Jana Clark...

Kyle is doing better. He was still on the antibiotics, but seems to have the infection under control. Now the main problem is getting him to eat. Jon and Beth feel it's because when he was so sick, he threw up so much that he's
afraid to eat for fear it will make him sick. He's been drinking water and has started to eat a little, but not much and not often. They could really use everyone's prayers that this problem will be resolved and he'll get over the fear of this. He's being home schooled again this year. Actually, I think they're getting a tutor like they did last year to come in twice a week. I think they're really wary of infection especially with his being weak anyway. But Brandon [his cousin] spent the afternoon with him Wednesday and they had a ball, so he's feeling well enough to have people over.


UPDATED August 15, 1998

Update from Jana Clark...

Hi again,

We have better news today.  Kyle underwent the procedure to drain his hip of the infection and they removed a lot of matter from him, but they seemed to get it all.   It was definately an abcess.  Thankfully!   He seems to be doing better today.  He had a really good night last night. 

He had been in a lot of pain and wasn't been able to sleep very well, but he was able to get a good night's sleep and is feeling much better today.  His fever had spiked before the surgery because they had to take him off
the Motrin that was keeping the fever under control. They went ahead with the surgery anyway, because the risk of the abcess was much greater than the fever.  The doctor said Kyle was extremely brave and the procedure
went much better than they hoped.   It appears that they are getting the infection under control and Kyle is planning on going home tomorrow.  Jon and Beth especially wanted everyone to know how grateful they are for the
prayers everyone has said on their behalf and they know God does hear and is answering.

Thanks for your help.

Love,
Jana


UPDATED August 14, 1998

Here's another update from Jana. 

-------------------

Just wanted you to know that Kyle has been admitted to the hospital today (8/13). I just talked to Jon. Kyle had ultrasound and MRI done today to determine the cause of the pain in his hip. He does have the staph
infection which is being handled with antibiotics, but the pictures showed that he does appear to have fluid in his hip socket.

The doctors will be taking him in to surgery to drain the fluid. It will be a short procedure and will probably be given a local, and won't put him totally out,  but they won't know more until they actually try to drain the fluid. We were worried the cause might be a tumor, but they're pretty sure it isn't. They haven't seen this particular type of abcess very often, so can't say for sure they won't have to go in surgically to fix the problem. Jon said that the if they don't get rid of the infection in the hip, it could cause damage to the bone.

Kyle is in a lot of pain and hates being in the hospital, but he's being a real trooper and knows he has to have it done. Well, just wanted to update you on what's happening. Will send more info when we hear.

Love,

Jana

Here's another update from Jana. Please pray for strength for the family as well as healing for Kyle. Janine

--------------------------

My mom just talked to Jon and Beth to see how Kyle is doing and he said that they've taken him to two doctors to see about his joint pain. I guess his hip, arm and leg are really giving him a lot of pain. They know
he has a staph infection, but there appears to be localized infection in his hip. Kyle will go in for an ultrasound tomorrow to see if there is infection there. They are unsure at this time what is causing the pain.

They are hoping to find they can just drain it, but they may have to go in and surgically clean out the hip. They won't know until tomorrow what the situation is. They don't even want to entertain the idea that the cancer has spread, but I know it's in the back of their mind at this time.  Jon and Beth are feeling pretty discouraged and scared right now.

I know you know how that feels. Just wanted to catch you up on the situation. Hopefully, next time I write it will be better news.

Love, Jana


UPDATED August 13, 1998

From Kyle's aunt, Jana Clark:

Kyle has been diagnosed with a staph infection. He is at home taking antibiotics because the doctors felt it was more dangerous for him to be at the hospital where staph is rampant. He came down with flu-like symptoms last
Thursday (8/6) and just recently developed severe joint pains and swelling. The doctors had told Jon & Beth that it was the flu, but it appears to be a severe staph infection, which is extremely dangerous, especially for someone with a weakened immune system.  They urgently need your prayers for his healing in this situation. Until this time, he had been doing really well. He was tolerating the medication much better and they were starting to increase
his dosage. His last MRI's showed the tumors to be stable, which was good news.  This   infection is a really serious setback. Thanks to everyone for their continued prayers and cards. The whole family really appreciates it.

P.O. Box 397
Freeland, MI 48623-0397

Janine Krueger


UPDATED April 24, 1998

Just wanted to send you the results of Kyle's visit to Houston. Their trip went very well and they came back really encouraged. They had been told by the doctors at Univ of MI that the tumors had not grown, but when they got to Burzynski, the doctors there said the tumors had gotten smaller--a seven percent decrease in size since January. We were optimistic, but are amazed at the shrinkage. He's been on maintenance dosage, when he's even on it. That the tumors are shrinking is really a miracle. The doctors want to up his dosage and decrease the time it is infused into his system. Jon and Beth will be increasing the dosage slowly to help prevent the side effects--nausea, vomiting, hives, swelling--that he's dealt with in the past. It seems to really be bad when they do jumps in dosage without gradually working it up. He's handling the meds much better now. Some of the best indications that things are working is that he hasn't had leg aches in a long time. He even walked all over the river walk in San Antonio this past week and never had any problems. He's starting Little League. He's in the instructional league and probably should be in a higher league, but they felt it would be safer and he would be less likely to be hit, at least by a really hard throw or hit, in this group. He will wear protective coverage. He's just thrilled to get out and play. In fact, he's on Brandon's team and Jon is coaching, so it's especially fun this year.

Well, just wanted to get this info to you. We're excited about it and Jon and Beth are really encouraged, it seems this is a real glimmer of hope they've been given.

April 24, 1998

From Dianne Clark (husband: Roland Clark)

We heard from Craig and Jana (the Clark's son and his wife) about Jana's nephew, Kyle Ledy of Freeland, Michigan. It is good news! Jon and Beth took Kyle to Texas, to the clinic, and the tests show that the tumors have shrunk 7%. This is very encouraging to them. Kyle is still unable to take the full dose of medication due to complications and yet there is a positive change. They appreciate the prayers of the brethren. Please pass on this message.

Thanks,

Dianne Clark


UPDATED April 20, 1998

Kyle and family headed to Houston on Tuesday. His MRI results were good. They show the tumors are stable and have not grown. With the problems he's been having over the last few months it's really a miracle that they haven't grown. He has for the first time gotten to the full dosage with his medication and only at this dosage will the tumors start to shrink. He wasn't even really at the dosage where the tumors would remain stable for a long time so we're all very encouraged at the results.


UPDATED March 31, 1998

Update as of 3/30/98

Just wanted to let you know that Kyle is scheduled for his next MRI on April 12 (Easter), they get the results on the 13th and head to Texas on the 15th. Anyway, they were requesting prayers that the results of the MRI would be positive and show shrinkage. Kyle has been more active, he has good coordination and he hasn't had leg aches in a long time. Actually, he did the other day, but he had been really active, running and stuff, that he hasn't done in a long time, so we're hoping that was just normal kid leg aches that all kids get after a full day of activity. So the physical symptoms are promising, but we're really praying that it's good news. Beth was really shaken up by that boy's death (who had the same cancer as Kyle). He was clear of tumors for a year and went in for his last MRI the same day Kyle did. Two months later, he's dead. I think the seriousness of this sinks in at times like that. It's always there, but you have to put it to the back of your mind, or you couldn't cope.

Update as of 3/27/98

Kyle seems to be handling the medication better. He still gets nauseous, but he knows the tricks to avoid really getting sick from it. He seems to be adjusting to the situation finally. He was off it for so long, that I think he realizes that if he wants the meds to work, he needs to be on it. They just found out that a boy in a nearby town that had the same cancer as Kyle just died. They had gotten to know the boy and his family. He wasn't on this program and went the conventional therapy route. He was blind and hard of hearing. His growth was stunted and the tumors still came back. It was pretty devastating for them, but I think it helped to reaffirm that they've made the right choice by not doing the radiation and chemo. They spend a lot of time wondering if they are doing the right thing. It's hard enough to know if you're handling the situation right when they get the flu, let alone something like this.


UPDATED March 25, 1998

Kyle is doing so-so. Ever since his bout with that staph infection, his immune system has been pretty low and he's been sick a lot. Of course, Derek brings home all sorts of things from school. They all seem to catch any little bug going around. It just seems to compound the problems.

Kyle also seems to be having some reaction to the medication. Every time they put him on, he gets nauseous or gets the hives. He can't go back to Houston until he's been on the medication at full dosage for a certain amount of time. He's been sick so much that they can't run the meds at those times and he hasn't been able to get up to speed with it. They can't figure out what's causing the problems. The doctors in Texas think he's having problems with the catheter again. The nurses here think it's some kind of flu bug. Beth thinks it's the cancer meds. Hopefully, they will find out soon what it is and get it solved. He's so bored, but doesn't feel well enough to get out and shouldn't be around a lot of people anyway. Poor little guy.



UPDATED January 28, 1998

Kyle had a MRI done on his spine two weeks ago. The results showed that the tumors had not grown since the last MRI three months before. This is very encouraging. The doctors feel that the medication is working and are increasing the dosage in order to begin shrinking the tumors.

Kyle will be going to Ann Arbor tomorrow for a MRI of his brain. They would appreciate your prayers that the results of this MRI are positive as well. Kyle has been feeling pretty good for the past three weeks. Please pray that with the increase in dosage that he continues to feel well.

Thank you for your continued prayers, love and concern for the entire family. It is greatly appreciated.


UPDATED December 22, 1997

We would like to give you an update on Kyle. He has now made a second trip to Houston. His next scheduled trip will be late January or early February. He continues to be monitored locally by his family doctor and undergoes blood tests weekly. Kyle has faced a few setbacks lately. He had been hospitalized in November due to a staph infection. He was released and went to Houston for his last scheduled appointment at the clinic there. They were encouraged by seeing how well others are progressing with the same treatment.

The doctors at the clinic felt that Kyle is also progressing well. His tumors are slightly enlarged, however, his neurological responses are excellent and that is what the doctors are more concerned with at this time.

Kyle was back home and doing pretty well until last Saturday when the staph infection returned and he is once again in the hospital. He is doing much better but we are not sure when he will be able to come home.

We truly appreciate the care and concern that has been shown for Kyle. The support has been incredible. We have raised about $70,000 of the $100,000 necessary for one year's treatment. More important than the money are the prayers, thoughts and love behind it.

Jana Clark


UPDATED December 12, 1997

Kyle and his parents returned from Houston, Texas this last weekend. Before going there Kyle had an MRI scan of his brain to see whether the treatments are working. The doctor said the tumors have grown a little but not to be too concerned because the neurological test came back good. Kyle has been placed on Decadron, a steroid, to help with possible swelling of tumors. It causes him to retain fluids though. He has gained 35 lbs. at this point. They want to take Kyle off of the steroids, but there can be some complications in doing so. Please pray that the side effects will not be too difficult for him.

Cards or letters to Kyle, Jon, Beth and brother Derek can be sent to:

P.O. Box 397
Freeland, MI 48623-0397


UPDATED November 10, 1997

Kyle had to be taken off his medication briefly due to some problems with reduced white blood count and fluid retention. They got the blood count problem under control, but the fluid gain is still causing concern. He's put on 30+ pounds in the last month. He doesn't even look like himself anymore. They've put him on diuretics to get it under control and he needs to take potassium pills, because he's low in that. They plan to put him back on the cancer meds tomorrow. They're still working out when to return to Houston. They are pretty discouraged right now.

They weren't able to do anything fun during the feast time. Kyle had to go in for extra blood work and an MRI. He's going to start getting a tutor at home for school. It's too hard for him to go in. They really can't do anything else until they get the fluid retention problem under control, and every day he's off his meds means the cancer has a chance to get a hold and grow. They're pretty overwhelmed right now and hardly know which end is up, so people offering help like this [a UCG member in Pennsylvania sent an e-mail offering his frequent flyer points to the Ledys] is really a big boost.

Janine Krueger LJKrueger@aol.com


UPDATED October 7, 1997

From Jana Clark (Kyle's aunt)

Kyle Ledy, son of Jon and Beth Ledy, members of the Midland, Michigan congregation, has begun treatment in Texas about two weeks ago. So far thing have gone well. He has had no adverse reactions to the medication which is good news. They do not expect to see results for at least 2 months.

Kyle returned home this weekend. He will be monitored by a doctor locally returning to Texas at least once a month. He wears a backpack with his medication which is fed directly into his blood stream.

The family has been thrilled by the support from the church and the community. They have been inspired by it. Kyle has received cards and letters from around the world. He is especially pleased by the support of the children have given him. He knows they are praying for him and the cards have been great.

Prayers are so appreciated by the entire family. They ask for continued prayers for Kyle and his family.


UPDATED October 3, 1997

From: LJKrueger@aol.com
Subject: LH Update on Kyle Ledy

I received this update yesterday from Kyle's aunt Jana.

Janine Krueger

------------------------------------

I just wanted to update you on what is happening with Kyle since we last talked. Jon is now home and Beth has been learning how to care for Kyle. He had a catheter inserted into his heart to deliver the medication intraveinously. There has been no complications from this procedure. They started out the medication on a low dose and have gradually increased it. He hasn't had any reactions to the medication. Beth has to learn to replace the tubing, clean the catheter port and replace the medication bags. Hopefully, they will be able to come home on Tuesday at the latest. The only side effects that Kyle has had are an increased sodium level and decreased potassium level, which are being monitored regularly and handled through diet and diuretics.

Things here have been going crazy. We've had incredible support from the community. So far we have reached the initial cost and have actually raised over $29,000. In only three weeks. It's been absolutely amazing. We've had a lot of help from family, but the people here have bent over backwards to do all they can to help.

Jon goes tomorrow to an area high school which has spent a week raising money to give to Kyle. We've had two bakes sales, raising over $2000. A raffle is planned for Dec. 6, and an auction is being sponsored by the school PTO for Nov. 7. Local children have wanted to help so a variety show is being organized. We've had many local businesses volunteer to cater a spaghetti dinner. Some of the local restaurants are donating all tips to Kyle. The woman who organized one of the bake sales is planning one for December too and there are plenty of people wanting to help.

We've had people tell us that it is obvious God is working with this because they've never seen anything like this (these are people in the area, not church people). We have an extensive canister program around here, some of them bringing in over $200 a week.

One of the main concerns about Kyle was solved this week. Jon had to find a doctor willing to monitor Kyle here before he could come home. Because of the experimental nature of the treatments, we were warned that there probably wouldn't be a doctor willing to touch him. Thankfully, Jon found out Tuesday that his family doctor was willing to monitor Kyle. He needs to see him every week. One especially good thing is that since these are routine blood tests, they will be covered by insurance. One less thing to worry about. Then he will just have to go back to Houston once a month for more extensive tests. We're all anxious to have him come home. Since treatments will last a year or more, this is very good. Jon was wondering if they would just have to move, which we were just dreading, as they were.

Jon has also been fortunate in that we've had a number of people give them their frequent flyer tickets so some of the travel will be taken care of as well. Total strangers have really done incredible things.

Take care.

Jana


UPDATED September 19, 1997

The following is a report from Janine Krueger on Kyle's situation:

I just got off the phone with Jana Clark. Jana is Kyle Ledy's aunt, sister to Jon. Kyle and his parents are in Houston now where Kyle has been accepted into a experimental program for treatment of his brain tumor. Jana feels it was a miracle for Kyle to have been accepted in the program.

Jana told me that since this program is experimental, the Ledy's insurance won't cover it. She says it ironic because it's so much less expensive than conventional treatments.

She said their community has really rallied and had fundraisers and bake sales, and neighbors and other individuals and companies have contributed to a fund to help pay for Kyle's treatment.

The United Church of God minister there has set it up so that people can write the check payable to the United Church of God (see below), send it to this P.O. box and Kyle will get the money and the contributors will get a receipt for a tax deduction. Or, for those who aren't interested in a tax deduction, they can write the check directly to Jon, Beth or Kyle Ledy as a gift. The address is:

P. O. Box 315
Freeland, MI 48623

The whole family has really had a rough year. Duane Ledy (Kyle's grandfather) died last year from cancer and the whole family has had one trial after the other. I'm sure they would appreciate your continued prayers for the whole family.

++++++++++++++++++++

From Marge Kelley:

A fund has been set up for Kyle in the Freeland, Michigan area. If anyone would like to contribute they can sent money to:

United Church of God - Flint
P.O. Box 315
Freeland, MI 48623

I talked to Mary last Thursday and she said people in the area were having car washes, raffles, bake sales, etc. to help. It is a small town but Jon and Beth were interviewed on TV before they left for Houston so their story reached the outlying areas. They also have canisters in many of the stores with Kyle's picture on where people can drop in money. They needed $16,000 for the first appointment in Houston which was last Friday and they will need more for the rest of the treatments. Since it is experimental nothing is covered by insurance. They really need a miracle.

Regards,
Marge


UPDATED September 13, 1997

A prayer request was sent out on August 25 concerning seven year old Kyle Ledy. Following is an update:

Jon and Beth Ledy are in Houston, Texas, right now with Kyle. He is seeing a doctor there to see if he can be helped. The doctors in Michigan said there is nothing they can do except radiation and it wouldn't really help him. By the way, the therapy they are seeking is something experimental and is not covered by insurance.

It was suggested that we specifically ask all of the children in each congregation to put Kyle on their personal prayer list, making it their own job to pray for God's intervention. We all know that the Ledy family could certainly use a miracle right now.


August 26, 1997

Please pray for Kyle Ledy, seven year old son of Jon and Beth Ledy, members in the Midland, Michigan area. Last year Kyle had tumors removed from his spine but now more tumors have appeared and the doctors informed them today that the cancer is spreading to his brain.

Kyle is the grandson of Mary Ledy. Last November Mary's husband Duane died of cancer. The family especially needs your prayers during this difficult time.

If you would like to send a card to Kyle or the family, their address is:

P.O. Box 397
Freeland, MI 48623-0397