Need for Healing

[JohnS]

I posted this here because it isn't the kind of thing that fits in with the contentious tone of other Message Boards. I hesitated to post this at all but since I have shared my ideas and values here I felt that I should also share this time of testing and hardship.

Last Friday my 15 year old son, Keith, was diagnosed with Lukemia. He was immediately admitted to the hospital with white blood cell count of 340,000 and treatment started.

Labs drawn on Thursday showed WBC at 323,000; normal range is 7,000 to 11,000. Labs drawn on Friday had the WBC at 340,000 then later in the day up to 358,000. Saturday the WBC got as high as 369,000 but with medication and IV fluids it has dropped to 270,000 on Monday.

A bonemarrow biopsy on Monday confirmed the diagnosis of CML and also indicated the presence of cells that will effect his blood clotting ability. At this point I don't think the doctors consider him to be "stable" and he is still at risk for serious complications.

CML is most commonly found in adults over 40 and is rare in teenagers so he has attracted a good deal of attention. He is in a teaching hospital and has some really great doctors but only one has seen a case of CML in a teenager before.

It is a very stressful time with loads of fear and anxiety but we are blessed to have the support of literally hundreds of people and the prayers of even more.

I would ask those who pray to pray for Keith to be healed. For those who don't pray but send kind thoughts and best wishes those are greatly appreciated too.

More later.

JS

So sorry to hear this John ... without a doubt you have my prayers.

[Tiger]

John, I am so sorry that you are facing this right now. All of my very best thoughts and wishes go out to you, your family and Keith.

There have been great strides in the treatment of Leukemia. Your son is in good hands.

We will all keep your son uppermost in our thoughts. Let's hope he has a very speedy recovery and is back to being a 15 year old quickly.

Please keep us posted on his progress.

[Persephone]

You and yours are in our hearts.

[ponygurl]

John..all my best to your family.

[ponygurl]

Anytime you need support, an ear or just to vent or cry.. we are here john.

[JohnS]

Anytime you need support, an ear or just to vent or cry.. we are here john.



Thanks Pony and all.

I have tried to post a picture of Keith that was cropped out of a recent larger photo. If it desn't work I'll go back and fix it when I get time.

[Tiger]

He is a handsome young man. :)

[ponygurl]

Thanks Pony and all.

I have tried to post a picture of Keith that was cropped out of a recent larger photo. If it desn't work I'll go back and fix it when I get time.

:) Very nice.

[Julia]

John,

My thoughts are with you, your son, and your family.

When my step-dad was diagnosed with mantle cell lymphoma (which is similar to leukemia), we found a lot of support and helpful information from an internet listserver group of people going through the same (or similar) thing. From that group, we learned about things that even some of his doctors were not yet familar with, which increased the number of treatment options.

I know you have a lot of support from family and church, but sometimes it helps to have contact with people going through the same thing as you.

I know how difficult it is when a parent is diagnosed. But when it is your child :'( :'(. I am so sorry.

I will be thinking healthful and healing thoughts for Keith, and you and your family.

[ponygurl]

I am sitting here realizing how blessed I am.

[wellkeptsecrets]

John, I will keep you in my prayers and ask God to give the doctors the wisdom to know what the best course of treatment should be. Also that you and your family will be sustained during this time. He's a nice looking young man. Thanks for sharing his picture here.

[ponygurl]

Is it treatable with bone marrow transplant john?

[wendy]

I'm sorry to hear this John.

I hope his youth will be an advantage in fighting this.

For anyone who is interested, here is a site with a lot of information:

http://www.cmlhelp.org/

[guido]

John,

I'm very sorry to hear this. You and your family are in my thoughts and prayers.

[JohnS]

Is it treatable with bone marrow transplant john?


Yes, the plan is to do a bone marrow transplant after several months of Chemotherapy. The drug (Gleevec) is only a few years old and is very expensive ($2,000 + per month) but it has an excellent track record and is taken oraly instead of intervenously. It does have side effects which will have to be managed but he may not loose all his hair.

He is fortunate to have 7 siblings as potential marrow donors. My MD son-in-law did some research and came up with some statistics that give him a 80% + chance of getting a good marrow match.

[ponygurl]

Yes, the plan is to do a bone marrow transplant after several months of Chemotherapy. The drug (Gleevec) is only a few years old and is very expensive ($2,000 + per month) but it has an excellent track record and is taken oraly instead of intervenously. It does have side effects which will have to be managed but he may not loose all his hair.

He is fortunate to have 7 siblings as potential marrow donors. My MD son-in-law did some research and came up with some statistics that give him a 80% + chance of getting a good marrow match.





Great..and wonderful family support.

[Tiger]

I am shocked at the price of that drug. Will Keith be able to attend school while on the therapy?

You have just provided one of the best reasons so far for having a large family. :) I am sure a match will be made.

Is he is good spirits?

[JohnS]

John, I am so sorry that you are facing this right now. All of my very best thoughts and wishes go out to you, your family and Keith.

There have been great strides in the treatment of Leukemia. Your son is in good hands.

We will all keep your son uppermost in our thoughts. Let's hope he has a very speedy recovery and is back to being a 15 year old quickly.

Please keep us posted on his progress.



Thanks Tig.

I have been well pleased with the medical team but of the three attendings only one has seen a case of pediatric CML before. They have been very open with the lack of experience in this area and consult with the physicians in Adult Oncology on a daily basis.

We were first alerted that something was wrong when my son was working on a Boy Scout Medicine Merit Badge. His counselor for the Merit Badge is a senior medical student and in the course of demonstrating how the abdomen is palpated during a physical exam he noticed a firm mass which later was confirmed to be an enlarged spleen. Since we are at a teaching hospital and pediatric CML is something that many doctors never see, Keith's case has attracted a good bit of attention.

[JohnS]

I am shocked at the price of that drug. Will Keith be able to attend school while on the therapy?

You have just provided one of the best reasons so far for having a large family. :) I am sure a match will be made.

Is he is good spirits?


I was shocked too.

We expect that he will be able to go back to school but consistent attendance will depend on the side effects from the Chemo. We are very fortunate that he attends a small private school with a lot of flexibility and a support system that most people could only dream about.

Right now he is on an emotional roller coaster. This time last week he was a normal kid doing what nomal good kids do but then on Friday he finds out that he has a life-threatening illness and that, eventhough he doesn't feel "sick" his condition is not stable. He's a bright kid and a deep thinker who can read between-the-lines and so has to deal with some fear and anxiety that a less perceptive child might not. He is a good kid with a solid foundation and once he gets it all "thought through" he will be ok.

[Tiger]

He sounds like he is a very good kid. I am sure you and your wife are very proud of him. Wise beyond his years, it sounds like.

You say he does not feel sick. How did he come to be tested in the first place?

[JohnS]

He sounds like he is a very good kid. I am sure you and your wife are very proud of him. Wise beyond his years, it sounds like.

You say he does not feel sick. How did he come to be tested in the first place?


Yes, a good kid. Wise? That's not compatible with adolescence. ;D

See earlier post. An "adopted" son (med student) helping him with a Medicine Merit Badge was the first to notice an abdominal mass which was actually an enlarged spleen due to the accumulation of WBCs.

[Tiger]

Yes, I missed the "mass" part. Is Keith an Eagle Scout? That was really lucky that it was found so early - I should think that will make his recovery that much quicker. Most of us would not seek attention until something verifiable had occured.

Maybe the school would consider some homeschool classes along with his regular ones - so he does not fall behind.

[truelies]

John your family has the Prayers of me and mine.

[JohnS]

Yes, I missed the "mass" part. Is Keith an Eagle Scout? That was really lucky that it was found so early - I should think that will make his recovery that much quicker. Most of us would not seek attention until something verifiable had occured.

Maybe the school would consider some homeschool classes along with his regular ones - so he does not fall behind.




He will probably make Eagle next year.

It was caught in the "Chronic" stage but, in retrospect, we can see that he has had symptoms for about a year and a half. All the symptoms were attributed to other things and were intermittent so nothing was serious enough to warrant a visit to the MD.

He really struggled with Basketball this past year. He had joint pain, loss of energy and shortness of breath but we attributed it to "growing pains" and exercised induced asthma. Knowing what we do now we wonder how we missed it but it develops so slowly with such ambiguous symptoms that it is usually discovered almost by accident.

I don't know that early recognition makes that much difference in the time of recovery. The first part of treatment is to get the white cell count down and managing the side-effects of the Chemo while keeping his blood chemistry in balance. The marrow transplant and the recovery time after that will not be effected by earlier treatment.

I don't anticipate any real problems staying up in school. Our school is more like a "family" school and we have the ability to make whatever adjustments needed. The most difficult time will be the preperation for the bone marrow transplant and the subsequent recovery. That will most likely be done in Atlanta and we will have to be there for a couple of months.

[JohnS]

John your family has the Prayers of me and mine.


Thanks TL. We appreciate and need all the prayers we can get.

[Tiger]

He will probably make Eagle next year.

It was caught in the "Chronic" stage but, in retrospect, we can see that he has had symptoms for about a year and a half. All the symptoms were attributed to other things and were intermittent so nothing was serious enough to warrant a visit to the MD.

He really struggled with Basketball this past year. He had joint pain, loss of energy and shortness of breath but we attributed it to "growing pains" and exercised induced asthma. Knowing what we do now we wonder how we missed it but it develops so slowly with such ambiguous symptoms that it is usually discovered almost by accident.


Oh yes, hindsight. But every symptom you mentioned here - are the norm for healthy active teens. My own kids have been through every one of those - numerous times. But, as in Keith's experience, they got better. It is interesting to note that it is usually discovered by accident.

Are you happy and reassured by the doctors handling Keith's illness?

I don't know that early recognition makes that much difference in the time of recovery. The first part of treatment is to get the white cell count down and managing the side-effects of the Chemo while keeping his blood chemistry in balance. The marrow transplant and the recovery time after that will not be effected by earlier treatment.

I don't anticipate any real problems staying up in school. Our school is more like a "family" school and we have the ability to make whatever adjustments needed. The most difficult time will be the preperation for the bone marrow transplant and the subsequent recovery. That will most likely be done in Atlanta and we will have to be there for a couple of months.



Thanks for the info. I did some research on it after reading your post. It seems that the actual procedure for Keith will only involve an injection - followed by a sterile hospital stay to assure that it takes. the donor will have a bit more discomfort - but nothing unbearable. I am amazed at how far medical science has progressed.

I am happy that your school is so wonderfully supportive.

[Tiger]

One thing I have learned from this - as I have researched a number of sites - is that bone marrow donors are in short supply.

It certainly would be good for any/all of us to go down and get typed and if another person living on this Earth can benefit - it is a small sacrifice for us - to help them be healed.

My husband and I both are going to get typed. I hope others here will too.

[truelies]

One thing I have learned from this - as I have researched a number of sites - is that bone marrow donors are in short supply.

It certainly would be good for any/all of us to go down and get typed and if another person living on this Earth can benefit - it is a small sacrifice for us - to help them be healed.

My husband and I both are going to get typed. I hope others here will too.


This may sound like a stupid question ??? but is marrow taken & stored like blood or is the deal simple a record of whom is a match and available for a donation?

[JohnS]

I think he would appreciate your good wishes even if you don't share his faith.



That's right Suth. I tried to cover that in the initial post when I started this thread.




I would ask those who pray to pray for Keith to be healed. For those who don't pray but send kind thoughts and best wishes those are greatly appreciated too.



I have been greatly encouraged by those who have assured me that they would pray for Keith but the most touching has been:


You and yours are in our hearts.


So simple yet so full. Who could spurn the good will of a kind heart?

[ilovelucy]

JS

I discovered this thread late.....Keith is in my thoughts, and we will add him to our prayer list....I am so glad he is in good medical hands and know the whole family is rallying around him.....

Take care.

love,

lucy

[Persephone]

Your son has been on my mind, John. I don't know what to say, but I am sincerely hoping for the best.

These kinds of things really put it all in perspective. We waste so much time worrying and complaining about things that really don't mean anything in the face of a sick child.

When your son gets through this, he will be a stronger person. And he will have learned what's important in life in a way still don't understand after a lifetime of ups and downs.

[JohnS]

JS

I discovered this thread late.....Keith is in my thoughts, and we will add him to our prayer list....I am so glad he is in good medical hands and know the whole family is rallying around him.....

Take care.

love,

lucy


Thanks Lucy. We have been blessed in so many ways over the past week. Keith really had a hard time dealing with the fear and anxiety but in the process of that he developed something of a special relationship with the psychiatrist and the Chief attending of the Oncology Service. Yesterday the doc came into Keith's room, sat down and introduced himself as "Roger" and said that, for that visit, he wasn't a doctor. He talked to Keith and got him to play a couple of songs on his guitar with mom singing with him. When "Roger" was leaving Keith asked him what his latest CBC numbers were and the response was "the doctor will make rounds at 3:30 and he will tell you then".

It is great to have a supportive medical staff and family but in addition to that we have wonderful friends, true brothers and sisters, who have been there to meet even our smallest needs.

This morning we had six women come help with the house cleaning that was severely behind. They cleaned kitchen, bathroom, bedroom, swept, dusted; you name it - it was done. By about 9:30 everything was just about done when we got a call from Keith.

The doctor had told him that he could go home if he could keep pushing fluids. His White Cell count was coming down and all his meds could be given at home so if he could keep the fluids flowing he didn't have to be in the hospital. So Keith came home by Noon. He is on some mega high powered meds but doing great.

God is good!

[ilovelucy]

Thanks Lucy. We have been blessed in so many ways over the past week. Keith really had a hard time dealing with the fear and anxiety but in the process of that he developed something of a special relationship with the psychiatrist and the Chief attending of the Oncology Service. Yesterday the doc came into Keith's room, sat down and introduced himself as "Roger" and said that, for that visit, he wasn't a doctor. He talked to Keith and got him to play a couple of songs on his guitar with mom singing with him. When "Roger" was leaving Keith asked him what his latest CBC numbers were and the response was "the doctor will make rounds at 3:30 and he will tell you then".

It is great to have a supportive medical staff and family but in addition to that we have wonderful friends, true brothers and sisters, who have been there to meet even our smallest needs.

This morning we had six women come help with the house cleaning that was severely behind. They cleaned kitchen, bathroom, bedroom, swept, dusted; you name it - it was done. By about 9:30 everything was just about done when we got a call from Keith.

The doctor had told him that he could go home if he could keep pushing fluids. His White Cell count was coming down and all his meds could be given at home so if he could keep the fluids flowing he didn't have to be in the hospital. So Keith came home by Noon. He is on some mega high powered meds but doing great.

God is good!


Y'all get some rest....

[wendy]

I would appreciate it if we would limit the participation on this thread to prayers/best wishes for Keith and updates on his condition.



We don't need a rehash of what happened two years ago on NewsMax.

[ponygurl]

I would appreciate it if we would limit the participation on this thread to prayers/best wishes for Keith and updates on his condition.



We don't need a rehash of what happened two years ago on NewsMax.


8)

[JohnS]

Your son has been on my mind, John. I don't know what to say, but I am sincerely hoping for the best.

These kinds of things really put it all in perspective. We waste so much time worrying and complaining about things that really don't mean anything in the face of a sick child.

When your son gets through this, he will be a stronger person. And he will have learned what's important in life in a way still don't understand after a lifetime of ups and downs.



Sometimes people have to suffer much for years but in the process they gain a wisdom that they would not otherwise have and are able to help others when they have to endure hardship. If we accept our suffering and allow God to use it it can be instrumental in bringing about much good. I don't understand it but I see it happen and have already seen some good things happening in the lives of others through the past weeks worth of unpleasant experiences for Keith and our family.

[JohnS]

John.........some are praying without saying.....just so ya know.


Thanks tileman, I appreciate it.

[The Guardian]

John,

I just discovered this thread as well as all the fallout. :rolleyes:

Your son and family definitely have our best wishes and we hope for a speedy recovery. 15 is quite young to be facing something like this disease, but it sure sounds like your son has the family and other support to help cope with the struggles ahead.

[ilovelucy]

How's Keith doing now that he's home?

He is lucky his mom is a nurse! <smile>

[I-RIGHT-I]

I just saw this John. I'm so sorry for you, the family and the boy. Thanks for bringing this to our attention. It's a dose of real life. My prayers will be going out tonight as well.

[Sparky26]

You and your family have my prayers, John. :) I know that God will see you through and He will be your comfort and strength during this time.

[JohnS]

John,

I just discovered this thread as well as all the fallout. :rolleyes:

Your son and family definitely have our best wishes and we hope for a speedy recovery. 15 is quite young to be facing something like this disease, but it sure sounds like your son has the family and other support to help cope with the struggles ahead.


Thank you. We also hope for a complete recovery but the treatment takes time and some portions of the therapy are pretty radical. It boils down to killing off enough abnormal cells to get him in a state of remission and then destroying all of his bone marrow and immune system so it can be replaced with normal bone marrow cells.

It is hard for a 15 year old who isn't quite ready to think about life-long issues to get slapped in the face by something that has changed his life forever. It's probably easier for a younger child to handle but at 15 he understands the severity, the complexity and the implications of the illness but still lacks the maturity to handle it like an adult.

We are fortunate beyond measure to have a support system that few people could imagine possible. We live in a multi-denominational Christian Covenant Community and have the support of other Covenant members with whom we have made a life-long commitment. We have the support of the Covenant brothers and sisters who live next door, across the street, around the corner, on the next block, across town, etc., etc. . Since our members come from different parts of the Country, when there is need for prayer the call goes out to people all over the USA and beyond. Within hours of learning the diagnosis we had hundreds of people praying for Keith and by the next day the number was in the thousands.

I could go on and on about how the MCG (Medical College of Georgia) staff, our pharmacist, our primary care physician and others have gone beyond our expectations in the services they have provided. We are truely blessed.

[Unca Walt]

John,

There is one tiny silver lining: Your son's age. I discussed this with MySonTheDoctor, and he says that the youth factor is a definite plus for resilience.

Also, it would appear that any marrow typing match will almost certainly have to come from siblings. It is great there is a passel of them.

Have any of them been typed yet?

Unca Walt, Wishing, Praying, and Hoping for your son's recovery.

[JohnS]

How's Keith doing now that he's home?

He is lucky his mom is a nurse! <smile>


He's doing much better emotionally than in the hospital. His doc said last week that he wouldn't go home until his WC count was down to about 100,000 but then they let him go with a count of 230,000. I'm almost certain that they did a "mental health" discharge and will let him stay at home if his numbers keep coming down.

We went to the lake yesterday and had a great time pitching horseshoes and visiting with extended family and friends. We really needed a break after the intensity of the past week.

[ponygurl]

I'm a mom. My heart goes out to Keith's mom.

[JohnS]

I just saw this John. I'm so sorry for you, the family and the boy. Thanks for bringing this to our attention. It's a dose of real life. My prayers will be going out tonight as well.


Thanks I-RIGHT-I. Yes, real life and sometimes real life ain't much fun. I do appreciate your prayers.

[JohnS]

You and your family have my prayers, John. :)



Thanks Spark.



I know that God will see you through and He will be your comfort and strength during this time.


No doubt about it. He already has and will continue. :)

[JohnS]

John,

There is one tiny silver lining: Your son's age. I discussed this with MySonTheDoctor, and he says that the youth factor is a definite plus for resilience.

Also, it would appear that any marrow typing match will almost certainly have to come from siblings. It is great there is a passel of them.

Have any of them been typed yet?

Unca Walt, Wishing, Praying, and Hoping for your son's recovery.


Yes, the age seems to be an important factor. Another benefit of the age is that it is unusual for a teenager to have CML and so his case is getting a little more attention. My Son-in-law-the-doctor (resident in San Antonio) has been discussing the case with his Chief and has provided some valuable input.

We don't know yet when we will be typed for the marrow match but with six eligible siblings and two parents the chances of a good match are excellent. His older sister is not a candidate right now because she is pregnant but by the time he is ready she might be able to be a donor. Being pregnant also raises another possibility of treatment in that stem cells can be taken from umbilical cord blood. I don't know what the potential is but I'm sure it will not be overlooked.

We sure appreciate your wishin, hopin and prayin along with us.

[JohnS]

I'm a mom. My heart goes out to Keith's mom.


Thanks Pony, There's nothing like a mom's heart. :)

I'll pass it on to Keith's mom.

[jeny]

John, I will pray for your son, and for your family. All our best.

[JohnS]

John, I will pray for your son, and for your family. All our best.


Thanks Jeny and how are the wee one and mamma Jen getting along?

[jeny]

Thanks Jeny and how are the wee one and mamma Jen getting along?


Wonderfully, he's gained 3 pounds in a month, and four inches and I'm back in my old jeans. ;)

Like Pony, I feel for your wife, no one feels pain for another person like a mommy.

[PCW]

I'm so sorry to read this. Please keep us posted.

[JohnS]

Keith went to the Out-Patient clinic yesterday to have his labs drawn. White cells were down to 190,000 and Platelets were down to around 900,000. That's pretty good considering his white cells had been 369,000 and platelets had been over 1,000,000 nine days ago.

He has been tired and had little energy but that's about the only side-effects he has had. In the next week or so the older siblings will be tested to see if one of them will be a good match for a bone marrow transplant. There is a one-in-four chance that a sibling will be a good match so with the number of siblings he has he has an excellent chance of finding a donor.

[PCW]

Keith went to the Out-Patient clinic yesterday to have his labs drawn. White cells were down to 190,000 and Platelets were down to around 900,000. That's pretty good considering his white cells had been 369,000 and platelets had been over 1,000,000 nine days ago.

He has been tired and had little energy but that's about the only side-effects he has had. In the next week or so the older siblings will be tested to see if one of them will be a good match for a bone marrow transplant. There is a one-in-four chance that a sibling will be a good match so with the number of siblings he has he has an excellent chance of finding a donor.


I'm on the bone marrow transplant list, if they don't match, let me know what he needs, I'll get tested.

[ponygurl]

Keith went to the Out-Patient clinic yesterday to have his labs drawn. White cells were down to 190,000 and Platelets were down to around 900,000. That's pretty good considering his white cells had been 369,000 and platelets had been over 1,000,000 nine days ago.

He has been tired and had little energy but that's about the only side-effects he has had. In the next week or so the older siblings will be tested to see if one of them will be a good match for a bone marrow transplant. There is a one-in-four chance that a sibling will be a good match so with the number of siblings he has he has an excellent chance of finding a donor.

Very good.

[PCW]

FTR John, I live in the Atlanta area, so I'm not too far away. This isn't some empty gesture either; I feel very strongly about bone marrow donation.

[JohnS]

FTR John, I live in the Atlanta area, so I'm not too far away. This isn't some empty gesture either; I feel very strongly about bone marrow donation.


Thanks Liz, I appreciate the kind offer.

I think the testing is prioritized in a manner that will minimize the number of people tested to hold down costs. I don't have any exact figures but I was told that the blood tests to determine compatibility are very exensive. The sibilngs with the highest probably of being a good match will be tested first and then, if a good match isn't found, the next rank of probability will be tested. The first will be three adult brothers who live locally then his brother who lives in Austin. After that would come a 11yo brother and 5yo sister and then parents. He has an older sister but she is pregant and not elegible to be a donor but since she is due to deliver in mid September there is a possibility that he could get a stemcell transplant from umbilical cord blood.

Outside the family the odds of finding a good match go down to the 100,000 to 1 or less range. With those odds the chance of finding a match our of a pool of even a thousand potential donors is poor and the cost makes it impractical.

[jeny]

Still thinking of you and your family John. Keep us posted.

[ponygurl]

How's your boy john?

[JohnS]

How's your boy john?


Last Friday his white cell count was down to 147,000 and other lab values were moving in the right direction. As the Chemo kills off the white cells the Platelet count also goes down and must be watched carefully so that he doesn't get into trouble with clotting problems.

He went back to school on Moday and did ok but is very fatigued from the Chemo. Last night he had a hard time staying focused on his homework because of being so tired but as his white cell count goes down some of the drugs will be discontinued which should help with the fatigue.

No word yet about an appointment at the center where the bone marrow transplant will be done. When we get to that point we will be able to get some idea of a general time-line for treatment. The transplant preperation and recovery process will require some major adjustments in family life and we have to make sure the two younger children are not neglected while Mom and Dad focus on the needs of the child under treatment.

Fortunately, we are blessed with the support of many people and will have plenty of help when the time comes.

[ponygurl]

Last Friday his white cell count was down to 147,000 and other lab values were moving in the right direction. As the Chemo kills off the white cells the Platelet count also goes down and must be watched carefully so that he doesn't get into trouble with clotting problems.

He went back to school on Moday and did ok but is very fatigued from the Chemo. Last night he had a hard time staying focused on his homework because of being so tired but as his white cell count goes down some of the drugs will be discontinued which should help with the fatigue.

No word yet about an appointment at the center where the bone marrow transplant will be done. When we get to that point we will be able to get some idea of a general time-line for treatment. The transplant preperation and recovery process will require some major adjustments in family life and we have to make sure the two younger children are not neglected while Mom and Dad focus on the needs of the child under treatment.

Fortunately, we are blessed with the support of many people and will have plenty of help when the time comes.



Is there generally a long wait for appointments in the oncology departments where you live? Or are you waiting until his WBC count hits a certain level?

[JohnS]

Is there generally a long wait for appointments in the oncology departments where you live? Or are you waiting until his WBC count hits a certain level?



Our local doc will schedule the appointment with the transplant program in Atlanta. That will begin the process of testing to find a donor and getting more detailed informaiton to get all the financing in place. I think that this particular program does about six transplants per month so we will get into the system, find a donor and get our place on the schedule. That may be as early as six months or longer.

It is important to be in good shape for the transplant and to be mentally ready. Right now he is neither. When his medication can be reduced he will have more energy and have a better appetite and we will then begin to focus on getting prepared for the transplant. For now we are focusing on keeping him stable while the white count is coming down and managing the fatigue and depression.

It's pretty hard for a 15 year old kid who feels alright to be told that he has a life threatening illness and have to start taking high powered drugs that make him sick. One of the biggest challenges right now is working through the mental side of the issue.

[NorNec]

John...Thank you for sharing what you are going through..I have six boys and a girl. All are healthy now, but lately I have not slept past 1 am and wake up worrying about someone...I don't know who...just worry.

It is a comfort to know others can go throught it, and maybe me....I don't understand the worry I have.

God Bless.

[JohnS]

John...Thank you for sharing what you are going through..I have six boys and a girl. All are healthy now, but lately I have not slept past 1 am and wake up worrying about someone...I don't know who...just worry.

It is a comfort to know others can go throught it, and maybe me....I don't understand the worry I have.

God Bless.


I hope you can get that sleep problem fixed. Losing sleep like that can make you sick. I've been fortunate that I havn't had any trouble sleeping since my son got sick.

I have six boys and two girls. We've had our share of medical problems but nothing as serious as this. It sure makes you appreciate the blessings of good health but at the same time I have to acknowledge the many blessings we have seen since this whole thing started. Since the day of the diagnosis our family has been surrounded with the prayers and support of friends, community, school and church; even some people and churches we had never heard of before. We have seen good come from this trial and expect to see even more.

[JohnS]

Good news yesterday! WBC down to 22,000 from 147,000 just one week before. Platelets are down in the 600.000 range and hemoglobin is up. Keith is only on one Chemo drug now and is doing great. Next week we will have blood drawn from family members to see if there will be a good match for the bone marrow transplant. Things are lookin good!

[tileman]

Good news yesterday! WBC down to 22,000 from 147,000 just one week before. Platelets are down in the 600.000 range and hemoglobin is up. Keith is only on one Chemo drug now and is doing great. Next week we will have blood drawn from family members to see if there will be a good match for the bone marrow transplant. Things are lookin good!


VERY cool John....... :)

[ponygurl]

Most excellent.. :)

[ilovelucy]

Say hi to Keith for me....

Great news!

[PCW]

Indeed wonderful news John. Keep us posted, we'll keep praying.

[JohnS]

Indeed wonderful news John. Keep us posted, we'll keep praying.


Thanks for the prayers. Last Friday his white count was down to 2800 which was a little low. He had blood drawn again on Monday and it was down to 1900. We got a call from the clinic that afternoon and he is off all his Chemo until the white count comes back up into a normal range.

Overall he is doing very well and is only taking Septra to help avoid infection. Between the prayers, the pills and the potions we're going to get this boy well. ;D

[PCW]

Thanks for the prayers. Last Friday his white count was down to 2800 which was a little low. He had blood drawn again on Monday and it was down to 1900. We got a call from the clinic that afternoon and he is off all his Chemo until the white count comes back up into a normal range.

Overall he is doing very well and is only taking Septra to help avoid infection. Between the prayers, the pills and the potions we're going to get this boy well. ;D


Great news, he'll get through this. I'll pass it on to OAG.

[The Guardian]

John: Glad to hear things are moving in a positive direction for your son. Great news indeed! :)

[JohnS]

Friday's numbers were still low: White count 2100, Platelets, 46,000 and hemoglobin, 9.2. His numbers are low enough that he is on neutrapenic precautions because of the danger of infection and he also has a mouth sore that has made it difficult to eat anything that is not soft.

He has gained a few pounds but he still doesn't have much energy. He had the Spring Formal with his dance club last night and did fine but we made sure that he had a good long nap yesterday afternoon. The dance was from 6:30 to 9:00 and he didn't show any fatigue all night.

The event was held in the Civic Center which seats about 8000 and has a floor capacity of about two thousand. There were about 1500 dancers ranging in age between 12 and 18 divided into levels of 1st year, 2nd year, 3rd year dance club and 4th year Cotillion Club. With that many dance not all could be on the floor at the same time and those not dancing had to remain seated in their assigned sections so Keith had time to rest between dances. Besides the dancers there were probably 5000 spectators; mostly parents and other family members who come to see what the kids have learned. I was really impressed with how well ordered it was and marveled at the way the organizers managed to direct things and how well the kids responded.

Keith had a great time in 3rd year dance club this year and both he and his partner have applied for Cotillion club next year. Regardless of whether he does a second year of dance club or moves up to Cotillion he may have to miss several months if he has a bone marrow transplant.

[ponygurl]

Friday's numbers were still low: White count 2100, Platelets, 46,000 and hemoglobin, 9.2. His numbers are low enough that he is on neutrapenic precautions because of the danger of infection and he also has a mouth sore that has made it difficult to eat anything that is not soft.

He has gained a few pounds but he still doesn't have much energy. He had the Spring Formal with his dance club last night and did fine but we made sure that he had a good long nap yesterday afternoon. The dance was from 6:30 to 9:00 and he didn't show any fatigue all night.

The event was held in the Civic Center which seats about 8000 and has a floor capacity of about two thousand. There were about 1500 dancers ranging in age between 12 and 18 divided into levels of 1st year, 2nd year, 3rd year dance club and 4th year Cotillion Club. With that many dance not all could be on the floor at the same time and those not dancing had to remain seated in their assigned sections so Keith had time to rest between dances. Besides the dancers there were probably 5000 spectators; mostly parents and other family members who come to see what the kids have learned. I was really impressed with how well ordered it was and marveled at the way the organizers managed to direct things and how well the kids responded.

Keith had a great time in 3rd year dance club this year and both he and his partner have applied for Cotillion club next year. Regardless of whether he does a second year of dance club or moves up to Cotillion he may have to miss several months if he has a bone marrow transplant.

John. there is a mouthwash for people who take chemo to help with the mouthsores. It is yellow, but I cannot recall off the top of my head the name..I have only seen it used by two people.
Ask your dr about it though.

[JohnS]

John. there is a mouthwash for people who take chemo to help with the mouthsores. It is yellow, but I cannot recall off the top of my head the name..I have only seen it used by two people.
Ask your dr about it though.



He is using Peridex mouthwash and Mycelex for mouth care. I think that the Mycelex is replacing the Nystatin swish and swollow the was doing in the hospital. So far he is doing pretty good with finding soft foods that he can eat without problem.

Yesterday I fixed him some cheesegrits and scrambled eggs and he was able to eat them without problem. Last night, after the spring formal, he had Mahi Mahi and cheesecake for dessert. There are a lot of soft foods that he can eat but he has to be careful to avoid things that are too spicy.

[ponygurl]

He is using Peridex mouthwash and Mycelex for mouth care. I think that the Mycelex is replacing the Nystatin swish and swollow the was doing in the hospital. So far he is doing pretty good with finding soft foods that he can eat without problem.

Yesterday I fixed him some cheesegrits and scrambled eggs and he was able to eat them without problem. Last night, after the spring formal, he had Mahi Mahi and cheesecake for dessert. There are a lot of soft foods that he can eat but he has to be careful to avoid things that are too spicy.

Nystatin. Bingo. :)
Glad he's holding his own .

[jeny]

John, I'm really glad Keith is doing so well. Keep us posted. I will continue to keep your family in my thoughts and prayers.

[JohnS]

John, I'm really glad Keith is doing so well. Keep us posted. I will continue to keep your family in my thoughts and prayers.


Thanks Jen. We appreciate all the prayers and I am convinced that prayer is making a difference.

[WCP]

I am convinced that prayer is making a difference.


I'm hesitant to ask.

How? And for whom?

[JohnS]

Keith had blood drawn for labs today instead of Friday because we will be in Ohio this weekend for his older brother's graduation. White cell count was up to 2500, hemoglobin 10.0 and Platelets 116,000; everything is still low but moving in the right direction. If we hadn't been going away for the weekend the doc would have started him back on the Gleevec but now plans to start it back again a week from Friday.

The docs were ok with Keith going to see his brother graduate but have made contact with the Childrens Medical Center in Pittsburg in case he started having a problem and needed treatment.

[JohnS]

I'm hesitant to ask.

How? And for whom?


For whom? Prayers for Keith primarily but also for our family.

How? Knowing that people are praying for him gives Keith a lot of reassurance and hope. Like his parents and friends, Keith believes that prayer makes a difference and it does. That makes no sense to a nonbeliever because it goes beyond human understanding.

[ponygurl]

Actually..this has no religious base..but I believe positive healing and a good attitude go a long way in recovery.
I was 14 when my father was first diagnosed with cancer.When I was 16, it had spread to his bones , and he was given 6 months to live. We farmed. He had a family to raise. He never really stopped working. He did what he could. He would go out and help .He talked to us kids, joked, helped around the house. He was never a whiner.. he just accepted his lot and carried on..
The 6 months passed.. and 12.. and 20 years.. and at some time in there he had gone into spontaneous remission..
Maybe he was lucky.. but I believe in the power of positive thinking.

[poolboy]

I will add him to my list of people to pray for. Yes my father just lost his battle with cancer but I still believe in the power of praying and that there is great power in it!!

My father just died and I believe that the cancer had a part in it, but from what the doctors said he had heart failure. It was fast and he didn't have any pain!! We have also looked in numerous medical books and all of his symptoms point at heart failure and a heart attack.

[JohnS]

I will add him to my list of people to pray for. Yes my father just lost his battle with cancer but I still believe in the power of praying and that there is great power in it!!

My father just died and I believe that the cancer had a part in it, but from what the doctors said he had heart failure. It was fast and he didn't have any pain!! We have also looked in numerous medical books and all of his symptoms point at heart failure and a heart attack.





I'm sorry to hear about your dad choirboy. I will include him, you and your family in my prayers.

[ilovelucy]

You have a couple of congregations over here saying prayers for Keith, btw.

<wink>

Have a wonderful trip, JS.

[ilovelucy]

choirboy.

It is so difficult to lose a parent....

[JohnS]

You have a couple of congregations over here saying prayers for Keith, btw.

<wink>

Have a wonderful trip, JS.


Thanks Lucy.

It was a trip; 12 hours up on Thursday (our 32 wedding anniversary) and 11 hours back on Sunday. We could have made better time but made several "comfort" stops to keep old rusty joints from getting too stiff. The weather was great though and the I-77 drive through NC, VA and WV is almost as beautiful in the spring as it is in the fall.

We were able to stay with one of the professors about two blocks from the University. It wasn't "luxury" accomodations but I'll take a room in Burtons basement over the Holiday Inn any day of the week. (or weekend for that matter) We met a lot of good people and got to have some real "quality" time with Joe. It was a truly great weekend.

[JohnS]

Keith had labs drawn the day before we left and then again yesterday. His white cell count had gone from 2500 on the 5th to 31000 on the 14th (10,000 would be in the "normal" range) so he is back on the chemo again. Last time he was on Gleevec,400 mg. but that brought his white count down a little too fast so this time he is on 200 mg. It is a great drug but the docs don't have a lot of experience using it with teenagers. Keith is feeling good though and looking forward to his first high school spring dance tonight.

[wendy]

Tonight's the night? :)

I hope he has a wonderful time.

[JohnS]

Tonight's the night? :)

I hope he has a wonderful time.


He has been in dance club and there was high school dance in the Winter but this is his first "Spring Dance". Our school dances are very different because everybody comes but no one comes with a date. All the kids have been taught some basic steps so they all know how to dance and no one is left ut. The kids (like Keith) who have been in dance club know a lot of dances and are excellent dancers. I expect Keith to have a great time.

[JohnS]

The doc went up on the Chemo yesterday to 800mg per day. When Keith's white count got low they took him off all chemo and then started him back on a lower dose. The lower dose was too low so his white count is back up in the 70,000 range and now they are adjusting the dosage again. So far the worst side-effect from the chemo was one mouth sore and that cleared up in a few days.

The five siblings that live locally were tested to see if there was a good bone marrow match but there was none. An older brother in Austin had his blood drawn a few days ago but it will be about two weeks before we will hear about the results. His older sister is home from San Antonio for another brother's graduation and will have her blood drawn on Tuesday. If she is a match she would not be able to be a donor while she is pregnant.

In the mean while Keith is feeling fine.

[jeny]

I'm glad to hear Keith is feeling good. I will still pray. Hug your wife. ;)

[JohnS]

I'm glad to hear Keith is feeling good. I will still pray. Hug your wife. ;)


Thanks Jen, I sure appreciate the prayer. Definitely, the wife gets a hug. After the intensity of the past few days she deserves a hug and a vacation. In addition to working four days this week she had two doctors wisits for herself and the pre-op for knee surgery on June 3rd, Keith's appointment on Friday, buying graduation presents, getting ready for our #3 sons graduation, the reception after graduation and a party following the reception. We had Keith's piano recital on Wednesday, a meeting Thursday night, high school awards dinner on Friday night, baby shower for pregnant daughter on Saturday, church, graduation and reception on Sunday and a birthday celebration for me on Monday. That's just part of it. That woman has had a helluva week. If I had to do all the stuff she does I'd go stark ravin crazy. ;D

[ilovelucy]

Hi.

Y'all have such a life.....Get some rest this week.

Thinking about you.

[ilovelucy]

ps

Happy Birthday!

[NorNec]

Thanks Jen, I sure appreciate the prayer. Definitely, the wife gets a hug. After the intensity of the past few days she deserves a hug and a vacation. In addition to working four days this week she had two doctors wisits for herself and the pre-op for knee surgery on June 3rd, Keith's appointment on Friday, buying graduation presents, getting ready for our #3 sons graduation, the reception after graduation and a party following the reception. We had Keith's piano recital on Wednesday, a meeting Thursday night, high school awards dinner on Friday night, baby shower for pregnant daughter on Saturday, church, graduation and reception on Sunday and a birthday celebration for me on Monday. That's just part of it. That woman has had a helluva week. If I had to do all the stuff she does I'd go stark ravin crazy. ;D



Now the bottle of "wild turkey" is starting to makes sense to me... ;)

[JohnS]

ps

Happy Birthday!




Thanks Lucy, it was a great birthday! Only one of my kids was not able to be there and all four of my siblings had come for the graduation and were also there. This is the first time we had all been together for twelve years.

[JohnS]

Had a clinic appointment this morning; white count down to 12,000 which is slightly on the high side of normal but is great. Gleevec was reduced to 600mg per day from 800mg.

No word on blood test for a match from older brother in Austin but everything else is very encouraging.

[ponygurl]

Had a clinic appointment this morning; white count down to 12,000 which is slightly on the high side of normal but is great. Gleevec was reduced to 600mg per day from 800mg.

No word on blood test for a match from older brother in Austin but everything else is very encouraging.

8)

[ponygurl]

I can't believe you found me here
You saved me in the nick of time
Just when I thought nobody cared
You reached out and with your hand took mine

You know just how to pull me through
Thats what I love about you

You give me hope
And I can face another day
All it takes is love and faith
And the courage to believe

You give me hope
And theres nothing I cant do
I get all my strength from you
Saying you will stand by me
You give me hope

It might be dark
And I might be scared
But whatever this life brings
Knowing that you will always be there
I can take on anything

If your beside me in this fight
I know I'll make I through the night

Cause you give me hope
And I can face another day
All it takes is love and faith
And the courage to believe

You give me hope
And theres nothing I cant do
I get all my strength from you
Saying you will stand by me
You give me hope

If your beside me in this fight
I know I'll make it through the night

Cause you give me hope
And I can face another day
All it takes is love and faith
And the courage to believe

You give me hope
And theres nothing I cant do
I get all my strength from you
Saying you will stand by me
You give me hope



This past week has been the annual fundraiser/ telethon week for CHEO.. our local children's hospital in Eastern Ontario.
The above post is a song, written by Paul Brandt, a country artist, who is a Canadian. He used to be a pediatric nurse for the Children's Hospital in alberta , Canada, but now lives in Nashville.
The song was written, for the children in the hospitals.. in hope ...
I heard it many times over the last week during the telethon , John, and thought of you and your family.

[ilovelucy]

I just had the most wonderful time....I got to meet JS, his wife and three of their children, including Keith. What a delightful family!

Thanks, JS. My prayers are with all of you---we had so much fun!

[ponygurl]

I just had the most wonderful time....I got to meet JS, his wife and three of their children, including Keith. What a delightful family!

Thanks, JS. My prayers are with all of you---we had so much fun!

Luce.. very very cool.

[ilovelucy]

Yes, it was. They are a precious family.

I am so fortunate to get to know them.

[JohnS]

Luce.. very very cool.


It was very, very cool indeed. We were traveling home to visit family and the road went right past "Lucyville USA" so I asked Lucy if she would like to get together for coffee. Being a brave and adventuresome soul she agreed and suggested a good place to meet. It worked out for us to have lunch at a very nice Italian resurant with Lucy and Mr. Lucy. Sadly, little lucy was not able to be there but it was still a delightful visit. My boys thought that Mr. Lucy was a real cool guy and Lucy is just as much of a gentle lady in person as she is the forum.

I would love to meet Ponygurl too but Ponyville is about a thousand miles out of the way. ;D

[JohnS]

I just had the most wonderful time....I got to meet JS, his wife and three of their children, including Keith. What a delightful family!

Thanks, JS. My prayers are with all of you---we had so much fun!


Thanks Lucy, I thoroughly enjoyed our visit and look forward to the next time.

We got the disappointing news that the older brother in Austin was not a match. We should hear about the results of the tests on his older sister in a few days. If there is no match with a sibling then the parents will be tested. There is still a good chanch for a match but we have to be prepared that there might not be a match in the family.

The prayers are greatly appreciated.

[Persephone]

8) :)

[WCP]

I still have nothing positive to say on this thread.

I suppose I could lie.

[ilovelucy]

Oh good grief!

You would love these guys, bad!

[ilovelucy]

Mrs. JS is a delight, btw. As are JS and the guys we got to meet...My husband was so thrilled....

Those boys and the little one are so dear.

[wellkeptsecrets]

I still have nothing positive to say on this thread.

I suppose I could lie.


No, you couldn't.

[ponygurl]

John.. I hope your son is doing well and responding. I was thinking about Keith yesterday. My mother has a breast tumour. She has had it for over 20 years, and it has been a very slow growing cancer. They have been treating it only with a hormone inhibitor .. the goal being to shrink the tumour.. in the hopes to remove it.. I guess.
Mom is 80. The tumour has stopped shrinking.. and the doctors are talking chemo..
I offered "my opinion", which is what she asked for.. I hope I don't regret it.

[JohnS]

John.. I hope your son is doing well and responding. I was thinking about Keith yesterday. My mother has a breast tumour. She has had it for over 20 years, and it has been a very slow growing cancer. They have been treating it only with a hormone inhibitor .. the goal being to shrink the tumour.. in the hopes to remove it.. I guess.
Mom is 80. The tumour has stopped shrinking.. and the doctors are talking chemo..
I offered "my opinion", which is what she asked for.. I hope I don't regret it.


I hope your Mom does well with whatever she decides. You should never regret sharing your opinion if she asked for it. It is only your opinion and if it reflects your concern for her welfare I think she should appreciate it. Even at 80, if she is competent to make decisions let her do it and let her bear that responsibility. I bet she has had more experience making responsible decisions than you have.

My Dad is 86 and Mom will soon be 84 and both are as sharp and competent as they have ever been. They may make decisions I don't agree with but I still respect their decisions and their judgement.

Keith is doing great. A bone marrow transplant is not even being considered at this point. The Gleevec is keeping his blood counts in an acceptable range and as long as he can be maintained on it that will be his treatment.

We just had a five day vacation at Myrtle Beach and then yesterday he and his cousin flew to Texas to visit his 8 month pregnant older sister for a week. He won't be running any marathons but he seems to have enough energy to do everything he wants to do.

[NorNec]

No, you couldn't.



Close, but you left me with a taste in my mouth...I wish you would spit it out....


John, I am so happy to hear that your boy is doing so well...BN does too, but it would break the attitu...no, the picture of him not caring...He does...I am sure of that.

[ponygurl]

John.. glad the boy is doing well. 8)

[JohnS]

Close, but you left me with a taste in my mouth...I wish you would spit it out....


John, I am so happy to hear that your boy is doing so well...BN does too, but it would break the attitu...no, the picture of him not caring...He does...I am sure of that.


I think you're probably right about Unca Bad. Can't figure him out; gotta let him be who he is.

[JohnS]

John.. glad the boy is doing well. 8)


Thanks Pony, he is doing well and we pray that he will continue to do well.

He had something of a "dream vacation" this past week and now he will be with his sister for a week. The high point of the vacation at the beach was going parasailing then yesterday he flew for the first time from Atlanta to Houston. I talked to him as they were leaving the Houston airport and I think he got more of a thrill from flying than from the parasailing.

[ponygurl]

Thanks Pony, he is doing well and we pray that he will continue to do well.

He had something of a "dream vacation" this past week and now he will be with his sister for a week. The high point of the vacation at the beach was going parasailing then yesterday he flew for the first time from Atlanta to Houston. I talked to him as they were leaving the Houston airport and I think he got more of a thrill from flying than from the parasailing.

My brothers are older than me by 15 and 16 years.. I used to spend a lot of thime at their houses while I was a kid, as they were married and had small children of their own.. some of my fondest memories.. it was like I had three sets of parents..

He is a brave boy to parasail.

[JohnS]

Keith had another bone marrow biopsy in September to see if he was in remission. Eventhough his blood work looks good he was not in remission as the doctors hoped he would be. It appears that he cannot tolerate a high enough dose of Gleevec to put him in remission an so the next option for treatment is a bone marrow transplant.

We met with the transplant team at the childrens medical center in Atlanta last week and we have a tentative date of admission on Nov. 29 with the transplant taking place on about Dec. 7th or 8th. None of his siblings were a perfect match but his oldest brother was a 5 out of 6 match which is acceptable.

The transplant coordinator first suggested an admit date of Nov. 15 but his 16th birthday is Nov. 21 and he has his heart set on getting his drivers license on the 23rd.

After he is admitted he will have about eight days of radiation and chemotherapy that will completely destroy his bone marrow and leave him without an immune system. The transplant is a transfusion of his brother's bone marrow that will begin to replace the bone marrow cells that have been eliminated. He will be in the hospital for 4 to 6 weeks and then will have to be close to the hospital for the first hundred days after transplant. If all goes well he may be able to com back home and be followed by the docs who have been treating him since March.

Please continue to pray for Keith. He has a long hard road ahead.

[ponygurl]

John..I'm so sorry your family is going through this. Special wishes for Keith. :(

[ponygurl]

As a mom.. I cannot imagine.. you must be incredibly strong. :'(

[ilovelucy]

I met Keith personally...He is one fabulous and talented guy.....and his family is also.....

Love you all....call us okay. We want to see you again.

[JohnS]

As a mom.. I cannot imagine.. you must be incredibly strong. :'(


No more than anyone else in a similar situation. Sometimes you wish you could run and hide but that's not an option. I had hoped that there would be some alternative to a transplant but there doesn't seem to be any so that's what we will have to do.

The truely incredible thing is that I have one of the most incredible support systems in the world. It's easy to be strong when you have hundreds of people ready to provide every kind of support you could ever need.

[JohnS]

I met Keith personally...He is one fabulous and talented guy.....and his family is also.....

Love you all....call us okay. We want to see you again.


We might be able to do that if we get to make a trip to KY to see grandparents and family before Keith is admitted. We are right in the middle of a large home addition project and if we make the trip it will have to be a quick one.

[ilovelucy]

We would to see all of you again.....

[Sparky26]

Good thoughts and prayers for you and your family-John. :)

I pray that everything goes well...

[JohnS]

Good thoughts and prayers for you and your family-John. :)

I pray that everything goes well...


Thanks Sparky. In a way, things are going well. Keith has not had any major infections or illnesses. When he was first diagnosed his Hemoglobin was around 8.5 but it has come up to about 14.5 which is within a rormal range. He doesn't have much energy but that is a side-effect of the medication he is on. He is relatively healthy and physically in good condition to go into the procedure.

Right now the big concern is that he and his brother/donor don't get a cold, flu or any other infection.

[lgllady]

My thoughts and prayers are with you, your family and your son Keith. He is a handsome young man.

[JohnS]

My thoughts and prayers are with you, your family and your son Keith. He is a handsome young man.


Thanks lglady. I appreciate the prayers and kind thoughts. I believe that both have a positive effect. Of course prayer is far more powerful but kind thoughts and desires do make a difference too.

[JohnS]

Keith was admitted to the Bone Marrow Transplant unit at Childrens Health Care of Atlanta on Monday, the 6th. He had a central line placed that morning, got a big dose of dilantin in the afternoon and began preparative chemotherapy that night. He was pretty doped up from the initial dose of dilantin and morphine but is doiing much better today.

This week is supposed to be easy and so far it has been. Next week, when the chemo has done its job will begin the hard part. Transplant day is on the 14th and then things will really get difficult.

For now he is enjoying being treated like a King and making the most of the quiet before the storm.

[JohnS]

Day four (Thursday) wasn't as much fun and presented us with an unexpected and heart-rending set of circumstances.

Day four is typically the day that the nausea from the chemo gets worse and Keith was no exception with the nausea increasing right on schedule. The docs added another anti-nausea medicine that took care of the problem but made him very sleepy.

I had planned to come home on Thursday and return on Sunday and had left Atlanta at about 1:00 pm and hadn't been on the road but about 30 minutes when I got a call that my wife had been told that couldn't stay in Keiths room because she had a fever blister on her lip. She was devastated that she could not stay with him until the sore dried up but there was no alternative; she had to go.

I was with my 22 yo son and we turned around and went back to the place Charlotte was staying - friends who lived about four miles from the hospital. My 22 yo went on the hospital to be with Keith who was still sleeping and didn't know what had happened. Understandably, Charlotte was an emotional wreck but was doing much better today when my 22 yo and I left for home. My 19 yo son came to Atlanta today and will be staying with Keith for the next two days.

Charlotte stayed in Atlanta so she could rest and I returned home with my 22 yo son who graduates college tomorrow.

To all of you who are praying for Keith; Thankyou, Thankyou, Thankyou.

[ilovelucy]

Of course, not many of us have had a chance to meet that Keith...what a great guy he is.,,..SMART, TALENTED AND POSITIVELY ADORABLE..what a family HE HAS!

loveyouall.........

[ilovelucy]

ps How is that Celine?
She is so cute, as well....

<かわいい＞

[Rosie]

Day four (Thursday) wasn't as much fun and presented us with an unexpected and heart-rending set of circumstances.

Day four is typically the day that the nausea from the chemo gets worse and Keith was no exception with the nausea increasing right on schedule. The docs added another anti-nausea medicine that took care of the problem but made him very sleepy.

I had planned to come home on Thursday and return on Sunday and had left Atlanta at about 1:00 pm and hadn't been on the road but about 30 minutes when I got a call that my wife had been told that couldn't stay in Keiths room because she had a fever blister on her lip. She was devastated that she could not stay with him until the sore dried up but there was no alternative; she had to go.

I was with my 22 yo son and we turned around and went back to the place Charlotte was staying - friends who lived about four miles from the hospital. My 22 yo went on the hospital to be with Keith who was still sleeping and didn't know what had happened. Understandably, Charlotte was an emotional wreck but was doing much better today when my 22 yo and I left for home. My 19 yo son came to Atlanta today and will be staying with Keith for the next two days.

Charlotte stayed in Atlanta so she could rest and I returned home with my 22 yo son who graduates college tomorrow.

To all of you who are praying for Keith; Thankyou, Thankyou, Thankyou.



Hi John, I have been reading the board for a while and I am praying for your son and your family. You sound like a very strong and loving family. I will keep you in my thoughts.

You have a tough road ahead but it will be worth it. Hang in there!

[ilovelucy]

They ARE such a neat, neat family.....I am so fortunate to know them.

[JohnS]

Hi John, I have been reading the board for a while and I am praying for your son and your family. You sound like a very strong and loving family. I will keep you in my thoughts.

You have a tough road ahead but it will be worth it. Hang in there!


Thanks Harry, I do appreciate it. The family is kind of scattered right now but doing well. It is a lot easier to be strong when you have good support and we have people standing in line to help us with whatever we need. Then we have people like you , Lucy and others whose prayers are making a difference.

I know that it's going to be a though road and a long one but also a road filled with blessings and joy.

[ilovelucy]

Oh come back and see us.....We love all of you.

[JohnS]

Oh come back and see us.....We love all of you.


We would love to but it will be several months before Keith can travel any distance from medical care. He has to limit his exposure to sources of infection and will not be able to go back to school for a year. If all goes well he will be able to go back to regular school in January of 2006.

[ilovelucy]

In the meantime, we will be thinking of you.....

[JohnS]

Keith is on his 7th day of the 8 day count-down to Transplant day, day 0 on Tuesday - today is day -2. He started on a four day course of Busulfin at Midnight Monday. His nausea increased significantly on Thursday and Friday and he was pretty sick on Saturday. He was started on Cytoxan on Saturday and was feeling pretty bad all day.

His 19 year old brother has been with him for two days while his mom is banned due to the cold sore on her lip. This was something we never expected but his brothers (19 and 22 yo) have just finished final exams and were able to be there when mom and dad couldn't.

[ilovelucy]

He is such a love....I am glad the boys could be with him....

[Sparky26]

Lord we just ask that this transplant be a success. We ask that you give the doctors guidance and that you bring the knowledge that is needed to their minds. Father, we ask for your healing presence in this family and we ask for peace. In Jesus name I pray, amen.

If this offends you, John or if I am way off base, I will delete this, but I am still praying for your family.

[JohnS]

Lord we just ask that this transplant be a success. We ask that you give the doctors guidance and that you bring the knowledge that is needed to their minds. Father, we ask for your healing presence in this family and we ask for peace. In Jesus name I pray, amen.


Amen.




If this offends you, John or if I am way off base, I will delete this, but I am still praying for your family.



You're rihgt on the mark, Keep praying please; the most difficult part is yet to come.

[ilovelucy]

okay.....

[JohnS]

Just think they probably have been talking about cute nurses plus a little male bonding.

Hope all goes well for you and your family John!


Some of the nurses are very attractive. The staff here is very well trained and excellent in every way.

Things are going pretty good right now and we are seeing a lot of good things happening in the midst of this trial.

[ilovelucy]

Glad to know everything is going well.....My best to all....

[JohnS]

Glad to know everything is going well.....My best to all....


Things are going well right now but the most difficult time is yet to come. He received his transplant yesterday but that is only one small part of the treatment process. He was started on intervenous feeding on Sunday because he can't hold food down and will be on that until he is able to eat again.

[ilovelucy]

I hope Keith will be able to eat soon...How is Charlotte?

[JohnS]

I hope Keith will be able to eat soon...How is Charlotte?


He threw up only once today. He is on Zofran for nausea and if that isn't enough he gets Phenergan.

One of his doctors told him that he could eat little goldfish crackers if he wanted so he has tried several of those. He hasn't started getting mouth sores but when he does he will not be able to eat anything until they heal up. We've been told that they can be so bad that it is impossible to even swallow saliva. If they get that bad he will be on self-regulated morphine for the pain.

Charlotte is doing pretty good. I stayed in the room with Keith last night and will be with him again tonight and possibly Friday night. Right now I'm using a terminal that is just outside the door of his room.

Charlotte was allowed to come back into the room yesterday but she didn't stay too long. In a way she has been having a great time. Our married daughter is home from San Antonio for a few days and is staying with her mother-in-Law who lives in Atlanta and Charlotte has been able to go shopping with her and spend time with the new grandbaby. Also, the young man who first found Keiths enlarged spleen is home (Atlanta) from Denver where he is a first year resident in pediatrics. We have been able to have lunch with him and he has visited with Keith a couple of times.

We are staying with a family that lives only five miles from the hospital and they have made us feel at home and like part of the family. We had never met them before but we knew one of their daughters and one of their sons was the priest who officiated at my daughter's wedding. They also have another son who is a priest and that son had the same kind of Leukemia as Keith and had a BMT fourteen months ago.

It is really a strange time. There is the stress of a very difficult situation but, at the same time, there is also a joyful and exciting quality. It is really hard to explain.

[Annie04]

Sounds like you have an excellent support system John...glad it's all coming together for you and your family...

[JohnS]

Sounds like you have an excellent support system John...glad it's all coming together for you and your family...


Very true Annie but "excellent" probably falls short of the kind of support we are receiving. We have had everything we needed plus a lot more. The most important thing is to get Keith through the next few weeks without infections or organ damage from the megadoses of Chemotherapy he received and that his new bone marrow cells will grow.

[ilovelucy]

hugs to everyone.....

[JohnS]

hugs to everyone.....


:)

[JohnS]

Keith has been doing very well since his transplant on December 14th. He has had nausea and has thrown up at least once each day. He has not been able to eat anything for about five days and is being fed intervenously.

Last Thursday he began noticing a sensation of tightness in his mouth and cheeks. This snesation continued to develop into soreness and he has now developed mouth sores. This is what normally happens to transplant patients as an after-effect of the Chemotherapy. He is on morphine for pain and routinely gets medicine for nausea.

His White Blood Cell count is now down to 0 and this platelets have dropped to about 15,000. He was given more platelets on Saturday but the doctors have set a lower threshold at 10,000. If his platelet level falls too low he will begin to bleed so he will get platelets when his level gets to 10,000 unless he shows signs of bleeding before he drops to that level.

Today he was having more mouth soreness and his dose of morphine was increased slightly. It is painful to swallow anything and he is pretty uncomfortable. This will probably last about a week so he has several miserable days ahead of him. He also started to run a fever but that is expected and he is being treated with tylenol.

Please pray that the mouth sores do not last long and that he not get any infections. Right now he has no immune system and is unable to manufacture any blood cells or platelets. The next few days are the most critical and the most uncomfortable.

[ilovelucy]

You are in my prayers....Get some rest all of you, okay?

[JohnS]

You are in my prayers....Get some rest all of you, okay?


Thanks Lucy. We have been doing pretty good in the "rest" department. Older brother Paul (age 22) has been staying the night with Keith the past two nights and will be here again tonight and maybe tomorrow night. Paul and I have been staying more than Charlotte so she can get some good rest at night. Celine and James are also in Atlanta but staying with their older sister at her mother-in-law's home just north of I-285. That has worked well because we can still go see them but we don't have to take care of them. We have really been blessed with fantastic support and an excellent medical team.

[ilovelucy]

I am so happy to hear this.....Y'all are such a close family, and hearing this even helps me remember what Christmas is all about....love and family and real friends and caring about each other....

Funny to think of Celine as an "aunt"......I know she is probably quite good at taking care of the baby......

[JohnS]

Keith started loosing his hair yesterday and today he lost a lot more. He has talked about cutting in some funny shape but if he doesn't hurry there won't be anything left to cut. He has been running a fever of around 102 today but that is one of the things that are expected. His platelets were down to 6000 this morning and he got an infusion of platelets that brought him up to 26000. That is way below normal but adequate to keep him from bleeding. Fortunately, he did not start bleeding when he was so low.

[Annie04]

It's christmas and you ask for prayers...prayers can and will be delivered. I got tears because of how brave you are and how brave Keith is. We never realize our strength until it's tested. It's a blessing to have it tested, your son will always know just how strong he is. It's a good thing. Glod bless.

[MidnightRider]

Keith started loosing his hair yesterday and today he lost a lot more. He has talked about cutting in some funny shape but if he doesn't hurry there won't be anything left to cut. He has been running a fever of around 102 today but that is one of the things that are expected. His platelets were down to 6000 this morning and he got an infusion of platelets that brought him up to 26000. That is way below normal but adequate to keep him from bleeding. Fortunately, he did not start bleeding when he was so low.
Sorry to hear this JohnS. You're family is in my prayers.

[JohnS]

Sorry to hear this JohnS. You're family is in my prayers.


Thanks Maniac. Hair loss is just part of the treatment. Keith's 22yo brother has been staying with him for the past four nights and Wednesday night he let his brother cut his hair. His hair was already coming out in front to where he looked like Gollum in Lord of the Rings so we have a picture of Keith gazing at a ring saying "my precious, my precious" before he got it cut. He is going through some pretty painful stuff but he still hasn't lost his sense of humor.

[ilovelucy]

Keith's sense of humor is a gift....Tell him hi for me.

Wishing you all the best....and Merry Christmas!

[JohnS]

Keith's sense of humor is a gift....Tell him hi for me.

Wishing you all the best....and Merry Christmas!


I sure will Lucy.

It has been a good Christmas. Our Pastor came to see Keith on Thursday (150 mi each way) and we were able to have Mass right in his room. Christmas eve night two of his brothers spent the night with him and they watched a movie together. Christmas Day the Priest from the Emory Student Center came to bring him communion and visited for a couple of hours and then his oldest brother and donor spent the night last night.

Keith was ok with being alone for awhile on Christmas eve so we were able to go to Mass with four of our children. Then we went to a Christmas eve dinner party hosted by the family we will be staying with for the next few days. On Christmas day we had a little "family" gathering at the home of my son-in-law's parents.

It's hard having a child in the hospital on Chirstmas but we have been blessed by the hospitality and generosity of people who have opened their homes to us and shared Christmas with us.

[ilovelucy]

Do try the straight aloe gel for the mouth sores...might ease the discomfort....

Thinking of all of you....

[NorNec]

Do try the straight aloe gel for the mouth sores...might ease the discomfort....

Thinking of all of you....




I agree. It works wonders....thank you Lucy.

[NorNec]

JohnS, today, my heart is sad. Not only for your son, but for all those that lost children, father's, mother's...I am really at a loss as to what to say. Except for "God will provide"

[JohnS]

Do try the straight aloe gel for the mouth sores...might ease the discomfort....

Thinking of all of you....


Mouth sores have never been as bad as pain in the throat. Fortunately the morphine has greatly reduced the pain. He has continued to be able to drink gingerale throughout and ate a Twix icecream bar a couple of days ago. They are cutting back on intervenous feeding today so that he will start getting a little hungry and have more motivation to eat.

He was running a little fever several days ago but has had no fever for two days. All these are very good signs and the docs are very pleased with his progress.

[JohnS]

JohnS, today, my heart is sad. Not only for your son, but for all those that lost children, father's, mother's...I am really at a loss as to what to say. Except for "God will provide"




There are families here with much worse situations than ours but we have been blessed with a lot of support and a relatively trouble free course of treatment. He still has a ways to go and there can still be serious complications but God has provided us with everything that we need and more; much more. I guess the best way to approach it is to pray and then get out of the way so God can do the rest.

I sincerely appreciate all the prayers. :)

[ilovelucy]

Add aloe then to the gingerale and see if that doesn't help a little.....It will aid the healing process....

[JohnS]

Add aloe then to the gingerale and see if that doesn't help a little.....It will aid the healing process....


Aloe does help healing with some things. I will ask the doctor about using some kind of aloe supplement tomorrow.

[ilovelucy]

Great. I hope it helps....

btw, can Keith take chelated vitamins in some form?

[Raider]

I hope your son recovers quickly.

[ponygurl]

John.. does he now have the swish and rinse?

[JohnS]

John.. does he now have the swish and rinse?


He has to do mouth-care four times a day using Biotene. His mouth and gums have been too sore to use a brush but he has small spoonges on a handle that he uses instead of a brush.

[JohnS]

Keith is getting transfusions of platelets every day now and yesterday he had his first blood transfusion after his Hemoglobin fell to 7.7. He has had so many different meds going that has IV pole could not hold all the pumps and one had to be set on the end of his bed. He is still getting IV feeding and will not be able to eat for a few more days. His mouth sores are much better and his morphine is gradually being reduced but he still receives something for nausea every six hours.

So far everything has gone very well and the doctors are pleased with his progress. If all goes well he may get out of the Hospital in a week or so but would have to remain close to the Hospital in case he started running a fever.

[ilovelucy]

How are y'all going to be able to stay close to the hospital?

How is Charlotte?

Y'all take care.

[ilovelucy]

Just checking in....Hope Keith is feeling better.

[JohnS]

Just checking in....Hope Keith is feeling better.


Yes, much better. Praise the Lord!!

He (we) are getting out of the hospital today.

Last Wednesday he was scheduled for an upper and lower GI scopes but his platelet levels were too low to do the procedure. The docs suspected Graft vs. Host disease and needed to biopsy his stomach and colon to confirm that suspicion. He was started on steroids to treat the GVHD and given platelets to try to get his level up to 80,000 to lower the risk of bleeding from the biopsies. After ten bags of platelets his level was up to 73.000; lower than desired but they went ahead with the scopes. The biopsies could not confirm GVHD but the scopes showed a lot of irritation in his stomach but he responded well to the steriods and his diarreah cleared up quickly.

This past week his IV nutrition has been reduced and finally discontinued and he is taking all of his meds by mouth. He will be discharged with the central line in place and will receive IV fluids at night. He is still on some pretty high powered meds that can cause kidney damage and must stay well hydrated to prevent a buildup of toxins.

There have been some emotional ups and downs for all of us but things are going very well and we are all anxious to get him out of the hospital.

[MidnightRider]

Glad to hear your son is doing better.

[ilovelucy]

Thanks for the update....I know it will be good to be home.

[MidnightRider]

I bet your son is glad to be home around familiar surroundings.

[JohnS]

Thanks for the update....I know it will be good to be home.


He's out of the hospital but not back home. He has to stay close to the hospital for the next couple of months just in case there are complications. BMT patients at CHOA usally stay in the Marriott but we are fortunate to have friends who live close to the hospital and have opened their home to us for the next two or three months. If all goes well he will be able to go back home to Augusta in March where he will be followed by the Hem-Onc docs at MCG.

[JohnS]

I bet your son is glad to be home around familiar surroundings.


He is really glad to be out of the hospital but misses the nurses. The care he received at the Aflac Cancer Center has been excellent in every respect.

[JohnS]

We got some great news today from a test to determine how many donor cells were present and if there were any cancer cells left. The test showed 100% donor cells and no (0) cancer cells.

That is great news but there is still the possibility of complications. If all goes well Keith will be able to come home to Augusta before Easter. :D

[MidnightRider]

We got some great news today from a test to determine how many donor cells were present and if there were any cancer cells left. The test showed 100% donor cells and no (0) cancer cells.

That is great news but there is still the possibility of complications. If all goes well Keith will be able to come home to Augusta before Easter. :D
That's great news John. I am sure you're happy.

[Sparky26]

We got some great news today from a test to determine how many donor cells were present and if there were any cancer cells left. The test showed 100% donor cells and no (0) cancer cells.

That is great news but there is still the possibility of complications. If all goes well Keith will be able to come home to Augusta before Easter. :D


Praise God, John That's awesome!!!! ;D

[JohnS]

That's great news John. I am sure you're happy.


Yes, we're very happy but we still have to be very careful to make sure that Keith doesn't get any kind of virus or infection. I came home tonight but will not be able to see my liittle girl. She is staying with the family across the street but she has a cold and I can't take the risk of getting a cold and then passing it on to Keith. He doesn't have the immunities to fend off a virus and at this point a common virus could be fatal.

[JohnS]

Praise God, John That's awesome!!!! ;D


Yes, awesome and God is faithful. It is very promising news but the journey is not over yet. There is still a long way to go and prayer is still the most important factor.

[MidnightRider]

He is really glad to be out of the hospital but misses the nurses. The care he received at the Aflac Cancer Center has been excellent in every respect.


Thanks for the update John.

[MidnightRider]

Yes, we're very happy but we still have to be very careful to make sure that Keith doesn't get any kind of virus or infection. I came home tonight but will not be able to see my liittle girl. She is staying with the family across the street but she has a cold and I can't take the risk of getting a cold and then passing it on to Keith. He doesn't have the immunities to fend off a virus and at this point a common virus could be fatal.
That's true. Best not make him more worse than he already is.

[MidnightRider]

Yes, awesome and God is faithful. It is very promising news but the journey is not over yet. There is still a long way to go and prayer is still the most important factor.
My prayers are with you and your family.

[JohnS]

My prayers are with you and your family.


Thanks Maniac, I sincerely appreciate it.

[MidnightRider]

Thanks Maniac, I sincerely appreciate it.
You're welcome John.

[Annie04]

Wow, things sound like they are moving along. What strength your family has John. And what an event when your son does make it home!

[JohnS]

Wow, things sound like they are moving along. What strength your family has John. And what an event when your son does make it home!


It will be wonderful. I would love to have a huge celebration but that would be too much of a risk. We will wait until he has a fully functional immune system again.

[JohnS]

The boy (and his mom) is goming home tomorrow. At first we were told that he would have to stay close to the hospital in Atlanta until 100 days post-transplant. That would have been March 24th but he is doing well enough that he is coming home a month early. He will still have a clinic appointment once a week in Atlanta for awhile but will transition to being followed by the Hem/Onc docs in Augusta.

[Annie04]

That's great news John. I bet everyone is excited. :)

[JohnS]

That's great news John. I bet everyone is excited. :)


Yes, a lot of excitement today. He was home for about an hour but then went to stay with friends for about a week. We are doing some remodeling and the counter tops are not on yet and there is a little painting left to do. He and his mom will be staying about a block away until all the work is done.

Next Saturday will be another exciting day. His make-a-wish is a baby grand piano and I think that it will be delivered and set up next Saturday.

[WCP]

That's great, John. See the power of prayer?

Does your son know how to play the piano already?

[JohnS]

That's great, John. See the power of prayer?

Does your son know how to play the piano already?


I have never doubted that prayer gets results.

Yes, he's been playing for about six years. He also plays guitar and violin.

[ilovelucy]

I have never doubted that prayer gets results.

Yes, he's been playing for about six years. He also plays guitar and violin.


good news.....you are all in our prayers....

[MidnightRider]

Yes, a lot of excitement today. He was home for about an hour but then went to stay with friends for about a week. We are doing some remodeling and the counter tops are not on yet and there is a little painting left to do. He and his mom will be staying about a block away until all the work is done.

Next Saturday will be another exciting day. His make-a-wish is a baby grand piano and I think that it will be delivered and set up next Saturday.
Glad to hear the good news John. My dad is doing better and will be coming home in 3 weeks.

[Annie04]

A baby grand? Wow, that will be nice. My son plays too......music is great medicine. :)