History

Journal History

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Friday, December 9, 2005 7:14 PM CST

Happy Birthday to you, Happy Birthday to you, Happy Birthday Happy Birthday, Happy Birthday to you....We miss you so!

Thursday, December 9, 2004 8:57 PM CST

Happy Birthday Sweetheart! I wonder what you would have wanted for your 15th birthday.

Saturday, July 10, 2004 9:54 PM CDT

Another year without your smile, your hugs and kisses **sigh**

Tuesday, December 9, 2003 3:10 PM CST

Happy Birthday Sweetheart!

Thursday, July 10, 2003 6:34 AM CDT

A year since my eyes held their last vision of the wonderfulness of this child I named Justin......since my hands touched the wonderful softness of his cheek, and then sought to catch the last warmth free itself from his body. He was gone, tiptoed right passed me as I slept beside him. But he left no questions as to where he traveled...away from my arms. He opened the Heavens for me in those last few days, as he talked with other children who had passed on before him, and told of being among them. He is not lost, but has found the freedom we all seek to find....away from pain, away from the confines that we live in day after day. Knowing that he is in such a wonderful place is beyond explaining, but feeling the loss of him is so very very great......Dance On Justin, and know that you are greatly missed.

Monday, February 24, 2003 8:32 AM CST

Long time, no words....so sorry.

On January 29, 2003, Justin was joined in Heaven by his grandfather Ford. Grandpa was dx with cancer at the same time that Justin relapsed last year. Grandpa wanted to be cremated and then have his ashes buried in the military cemetery so he could be with his WWII buddies. Well, we were thinkin that it would be nice to have his ashes with Justin, in a family plot, so quiet plans were being made to do things in this direction. We must not have been as quiet as we thought though, as when grandma decided at the last minute (after grandpa's passing) to do as grandpa wished, he showed his approval when he decided to change the time on her microwave oven to military time when she returned home from the military service. I have tried and tried to find a way to change my microwaves' clock to military time, and it just can't be done, and now her microwave can't be changed to anything but military time. But what a wonderful sign from him that he is well and that he approves of the way his final days have been handled. In death we find miracles that extend beyond this earth, beyond this life.

Monday, December 09, 2002 at 07:24 AM (CST)

Happy Heavenly Birthday Sweetheart.

My heart is breaking with missing you sweetie.

I remember thirteen years ago, when you arrived in this world. There was something so special about you. I couldn't pin down exactly what it was, but there just seemed to be this little bubble around you that made you different and so very very special. If I had known then what was to be your life, I never would have been able to enjoy that which made you you.

So as you skip down those golden streets of Heaven sweetie, know that you were loved, are loved and will always be loved.

Tuesday, September 10, 2002 at 02:15 PM (CDT)

Today marks two months since you left us sweetheart, and it hurts just as bad today as it did two months ago. You left me standing at Heavens gate for so long before you decide to pass through, that it took a few weeks to shake that high that one gets when they have come so close to Heaven even though it was only to hold a hand of one who is passing. How you found the strength to stand there for so long, I will never know. When you would go into a crisis with your breathing or lack of it, and I would tell you it was time to let go, but you would gasp..."not ready"...well, I just didn't know how to help you let go. But then suddenly I realized that when you could no longer take the pain and the effort needed to continue, well then it would all be gone in a flash. So I knew that if you could take it, well I could too. It wasn't easy though sweetheart, but we got there didn't we. When you talked of "putting the shoes on baby Marissa" a few days before you passed, I knew that was a message to me that you were beyond that body that laid in pain in the bed before me. Some asked how I made it through those days, but it was things like that that brought me through. But yes, it was Oh so hard getting through those days.

Now I live on the memories you have left behind. I will always remember the Christmas of 2000, when you took your wallet from your pocket, grabbed out some money you had just gotten for your birthday, and put it in the Salvation Army kettle. The Christmas list you made out that year was mostly items you knew your brother and sister wanted. Only a few things were what you actually wanted. Boy did that make shopping hard. You were scheduled for major surgery a week after Christmas, and I wanted you to have everything you wanted and what did I find on the list...things for Josh and Jill!!!

Of course I remember the fun things you did too, like locking me out on the roof one winter day! Hey, you were only three, and didn't know that it was almost time to go pick up Josh and Jill from school. Second thought, maybe you did know it was time to get them and that's why you locked me out! Oh well, it was good for a laugh or two. Somehow, whenever you decided to do something bad, you always did it in a way that made all of us laugh. Never could punish you cuz I was usually laughing too hard.

So today, your two month anniversary day, I will try to remember all the joy and happiness you brought to this family, and try to put the pain aside......for at least few minutes maybe.

An added note...a few hours after I typed the above, Josh Jill and I were sitting in the livingroom, when Jill looked up and said "look there's a dragonfly looking in the window." I went outside and a very large dragonfly came up to me and hovered alongside of me for a minute, but when I tried to look closely into it's face, it then flew off, but quickly came back to fly just over the dog for a minute, as if it was checking her out. Amazing!!!

Tuesday, August 27, 2002 at 04:48 PM (CDT)

To know the secret of death, is to have sought it in the heart of life. For life and death are one just as the river and the sea.
In the depth of your hopes and desires lies your silent knowledge of the beyond.and like seed dreaming beneath the snow, your heart dreams of spring...trust the dreams, for in them is hidden the gate to eternity....

For what is it to die, but to free the breath from its restless tides, that it may rise and expand, and seek God unencumbered....
Only when you drink from the river of silence shall you indeed sing !
And when you have reached the mountaintop, then you shall begin to climb !
And when the heavens claim your limbs, then you shall truly dance !

(excerpts from the works of the prophet Kahlil Gilbran)

Dance sweetheart dance....I miss you so much.

Friday, August 02, 2002 at 06:37 AM (CDT)

What a wonderful adventure this must be for Justin! But what a hard time for his family. Giggles...I long to hear the wonderful sound of those giggles again.

These last three weeks, I have been riding on Justin's strength...a gift he gave to me during those final painful months. Slowly this gift is wearing off. First there is such relief that the pain has ended and the knowledge that Justin is in such a wonderful place, but then comes the reality...empty places, a missing face.

Roland and I went to his graveside last weekend, and I found it so much harder than when we buried him. When we walked back to the van, I felt something slide between my toes...yes, I was barefoot as usual... and when I looked down I found a bright yellow flower looking up at me...so bright and beautiful...a gift from Justin. Which brings me to a story about his funeral. When we arrived at the cemetery, my sister and I walked up to that big ugly hole in the ground and when we turned to look at the view, a huge dragonfly came flying right at us, and remained nearby during the service. I have never seen such a large dragonfly before. What is so amazing about this creature is that about two years ago I became fascinated with dragonflies after hearing so many stories about the children who have already been laid to rest, and about the creatures that have shown up at their funerals. At that time I knew that if Justin did pass on, that a dragonfly would be his sign that he was safe and happy in Heaven. Over these past few years, I have collected many a dragonfly...no not the real thing...with the help of friends and family.(who had no idea why I had suddenly become interested in this creature) Seeing this creature, so large and unusal, at that moment helped me through the most horrible thing I have ever had to go through.

Wonder if this has anything to do with the book that I use to read to Justin about a little bug that had a dream that he fought off his enemy with a large sword with a dragonfly on it. The name of the book was Dragonfly, and it has always been my favorite book to read to him.

Sunday, July 14, 2002 at 08:58 PM (CDT)

Friday afternoon, we laid Justin to rest with a very small quiet ceremony. Justin was a private person, and it was in this way that we handled his funeral.

I would like to thank everyone at University Hospital for spoiling us rotten during this terrible time. Justin was treated with such respect, and love while he was inpatient, that I totally understood his need to be there. Thank you also, everyone at the Ronald McDonald House for being there if and when we needed you. I am going to miss you all so much.

Sunday, July 14, 2002 at 08:58 PM (CDT)

Wednesday, July 10, 2002 at 08:58 AM (CDT)

Justin tiptoed quietly from his and his mother's bedside this morning to be with our Lord.

I will post more in a day or two.

Thursday, July 04, 2002 at 09:09 PM (CDT)

OK, next year I'm skipping the fourth of July! Last year Justin was admitted on the fourth, and when he received a transfusion, he had a major reaction that had everyone here at the hospital hopping, and had him in hives from head to toe. Well, this year definitely tops that one.

I woke a 4:30am and could tell right away that Justin had taken a big turn for the worse. When I felt his arms, they were very warm, but both hands were freezing. His breahing was very irregular and labored. Roland and I stood at his side for sometime, and after a hour he seemed more relaxed, so we decided to get some more sleep. Big mistake!
I felt someone grab my foot around 6am, and found Roland standing over me in pain. It seems that when he woke, he stretch out his back (you know, that back that has been sleeping in a hospital chair for two weeks now) and snap pop instant pain. Well, he tried this and that, and nothing helped the pain, and before long, we had two nurses helping him on a stretcher, and it was off to the ER with him. Of course Justin's pain started to increase while his nurses were taking care of his father, but it wasn't long before they were back, and with the help of his doctor, who was at his side very early this am, and some drugs, he was able to relax some. I then put a call in to my father in law who is next door in the VA hospital(yup, more cancer in the family), and he sent my mother in law over to watch Justin while I went to the ER to bring back papa. The ER doctor wrote a script for Roland's back so poor mom/grandma had to babysit son and grandson while I ran to the hospital drug store. Thank heavens they were open today! So, I now have a loopy (thank you pain meds) husband in one bed on one side of me, and a loopy son on the other side of me, and I'm the monkey in the middle who will be sleeping in the hospital chair/bed from now on.

Justin has very little air moving through his lungs, and his strengh to remain in this world amazes me and everyone around him. He got into some major pain later this afternoon, and even though we got right on it, it was over a hour before he could settle down. I can not even begin to explain how much work it is for him to even try to push some air through.

My heart is breaking!

Wednesday, July 03, 2002 at 08:39 PM (CDT)

Well, Justin's morning started out rough, but the doctors were quick to respond to his needs, and he has actually had a very restful day. Breathing is such a struggle for him though, his lungs are pushing very little oxygen through.

Tuesday, July 02, 2002 at 03:39 PM (CDT)

Justin is much more comfortable today. We have done some major increases in his pain meds over the past few weeks, and so for now, he seems to be comfortable. When he is in pain, it's more than likely due to tumor growth, and it can take several hours before we know that the pain is not just a passing thing, and then to adjust his pain meds to a level that is helpful. He has been doing these drugs so long, that adjusting them can be tricky. I feel very lucky that we are at a hospital with an excellent pain clinic. We were totally blown away when we found out that the NIH (National Institute of Health)had never seen an interthecal port for pain control. Can't imagine trying to deal with all this pain in any other way.

We still have a vomiting problem, and that I'm sure is not going to be something we can deal with. There is only so much room down there, and right now it's all filled up. He has also started moaning, and moaning and .... He says he isn't in pain, but man that moaning can wear your nerves down fast.

This kid is just too tough to give into this disease.

Sunday, June 30, 2002 at 01:21 PM (CDT)

More pain, more vomiting......more heartaches for all who know him.

Tuesday, June 25, 2002 at 08:22 PM (CDT)

Nothing much new here. Justin's pain has been pretty much under control since they increased his morphine on Sunday. He does get some stomach pain that is hard to control, but it is always short lived. We feel that he is filling his belly with air because he insist on blowing his oxygen into his mouth and not his nose like you're suppose to. My little creative thinker has always been able to find a better way to do things you know.

Tomorrow I have to leave his side for the day while I travel home and tend to some business there. This is going to be so hard to do. Daddy will be at his side though, and he will call me immediately if anything happens.

Sunday, June 23, 2002 at 08:47 PM (CDT)

And on and on we breath. Way too much pain though.

Wednesday, June 19, 2002 at 08:42 PM (CDT)

Well, we are here in Syracuse at the hospital. Justin's pain became to impossible to deal with at home, so we have been admitted for what will probably be our final days. More like final day I think with the change I have seen in Justin's breathing since we arrived. His pain does seem to be much improved though, so that is what really counts. I'm beginning to wonder if Justin feels more comfortable about passing here than at home too.

Sunday, June 09, 2002 at 08:36 PM (CDT)

Hugs and kisses are just so wonderful, I've gotten a few of the greatest hugs and kisses from our guy today. He's weak, very weak, but trying so hard to hang on. Letting go is just so hard for him. It's that bullheadedness that comes from his mother's side you know. I've had a few words with the Man Above for not taking him yet, it seems beyond cruel, but then I realized perhaps he's letting Justin make this decision.

This week has been a time for searching for the right pain control and just sitting back and watching tumors grow. The whole top of his head is just one hideous painful looking site. His bad leg has a tumor that is doing some very mean looking thing, and the one in his neck looks like a big threat to his airway. Wednesday he went into some major spasms that had him flying up in the bed, screaming in pain, and gasping for air. I really thought the time had come, and I talked to him about all his friends who have gone on to Heaven before him. He says he's not scared to go to Heaven..can't imagine! Luckly his Hospice nurse was here when he went into these spasms, and when it was over, he told her that he now knows what it feels like to suffocate. She ordered some valium for him, which is really helping, and we also have oxygen in his room if he needs it.

Other than that, all is well. :sigh:

Sunday, June 02, 2002 at 07:39 PM (CDT)

Justin has now gone four days without vomiting. This hasn't happened in a few months. He has also eaten more food in the past 24 hrs. then he ate all throughout the month of May. OK, that's not much, but what a change. He is also pulling himself up in a semi sitting position from time to time, and has talked more than I've heard him talk in a long time. Of course he has more visible tumors than I could ever imagine a person having. Very hard to look at, and it has to be painful in one way or another.

Tuesday, May 28, 2002 at 06:33 PM (CDT)

We have been given the time of about a week to say goodbye to this wonderful child of ours. He is refusing his IV fliuds, and no longer wants to run chemo. I doubt he would have been allowed any more chemo anyways, as it appears that his liver is now involved. Though nothing has been said to Justin about this liver thing, I can tell that he knows things are progressing in this way, and that is why he has made this brave decision.

Wednesday, May 08, 2002 at 06:35 AM (CDT)

Life should not be limited to only pain and suffering. Especially when one is only twelve. We have been home for a week now, and Justin is still vomiting, and also having a lot of problems with his mouth watering uncontrollably. He can't eat anything, and is now refusing to let me move him in any way. They say he is trying to seperate himself, and that could be, but I think the poor guy has just had enough of all this. He has no control over anything that happens to him, and for a twelve year old, this is not easy. Yesterday wasn't too bad for him, and though he didn't start the day well, by the time it was over with, he had watched a lot of TV. He also spent the last few hours before bedtime vomiting. Bummer!

Tuesday, April 30, 2002 at 02:48 AM (CDT)

Help, we have downloaded a virus....do not download anything from our email addy. Better yet, don't download anything!

Sunday, April 28, 2002 at 09:28 PM (CDT)

Justin has been inpatient since Tuesday, running another round of chemo. We were lucky in that his delay was only a few days, and his dose of chemo has only been cut by 25%. He is having a lot of problems with vomiting, and I sure wish we could get that under control. For someone who hasn't eaten in over two months, it's got to be so hard vomiting several times a day. His lips are all stained yellow from all the bile he is bringing up. OK, enough of the yucky stuff....His pain seems to be controlled at this point, and it such a relief to see him more relaxed. He is still in that same position though, and hates being moved. We were able to remove his one pain pump also, and that makes us very happy.

Tuesday, April 16, 2002 at 08:20 PM (CDT)

Justin has now finished twelve days of radiation and five days of chemo, and his counts are dropping slower than I expected. Unfortunely he will not be ready for chemo on time, but we already knew that would happen. The good news is that the chemo that we were told Justin would not respond to, worked! And from what I understand, his doctor only order a low dose of the stuff. Of the seven tumors on his head, two remain. They are smaller, but still there. Also, his hoarseness resolved itself in the middle of the chemo run.

Justin says that the radiation has helped, but yet he remains curled up on his right side and trying to get him in a sitting position is a real fight. Some of this is a mental thing I think, but he is allowed.

We are home, and have been here since Saturday, and he is still refusing to eat. What few things I have gotten him to take a bite of, he complains that they taste funny. My heart breaks. It's so hard trying to force him into things he doesn't want, and it's hard to decide what to allow to slip by, and what to force on him. He's feeling so low these days. He never talks about the fact that he is dying, and yet I don't think he's in denial of it. He hasn't even mention the conversation he had with his doctor when I wasn't around, when he was told there was no hope for him. How oh how can a twelve year old hold all this in?

Friday, March 29, 2002 at 07:49 PM (CST)

Oh what to say......This disease is cruel beyond belief. Watching any child suffer is hard to be sure....watching your own child is unbearable. Standing quietly by...trying to show only compassion when you want to scream....to whom I don't know.

Justin is dying, his pain is great. He has the intrathecal cath that is delivering pain meds right into his spine, and also a line feeding pain meds through an IV....and still the pain breaks through. He started radiation which is being done just for pain control, but after three treatments, we have had to delay for a few days, so we can run chemo. It seems that while we were waiting in the radiation dept last Thursday, Justin found a tumor on the top of his head. He now has seven of these tumors. The chemo will not stop them, but even after his doctor explained to him that the chemo will not stop him from dying, he still requested the chemo...so it is chemo we are getting. In a week or so with the effects of both radiation and chemo, I'm sure Justin will be in a serious situation with low counts...that's if the tumor doesn't wear through an artery before that.

Thursday, March 14, 2002 at 05:45 AM (CST)

Justin has been inpatient for 11 days now, and he is doing much better with his pain. Though he didn't want it, we forced Justin to have a line implanted from his spine to a port in his side for pain meds to be run through. By putting these narcotics directly into his spine, he will have much better control of his pain, while needing less drugs to do so. He still can't walk, but I believe that a lot of that problem is from the large amount of edema he has in his bad leg. Sitting is something we are working on now, and hopefully that will an achievable goal soon.

Still no chemo has been run, but we are taking him to the NIH in Maryland on Sunday, in hopes that he will be approved to run a phase one trial for his type of cancer.

Saturday, March 02, 2002 at 05:56 AM (CST)

Well, we are here at the hard part...the part that we knew would come, but could in no way fully prepare for.

Justin was admitted on Monday for pain control, and Thursday evening we left the hospital with Justin screaming in pain...Great pain control huh. They are talking of injecting directly into his spine, or putting a pain pump under his skin, but at the moment we are using a pain pump that delivers through his hickman lines. He hasn't eaten in weeks, so he is hooked up to an IV at night to help with that, and he has not been able to walk, stand or sit for some time now. I believe we will probably be back in the hospital at the beginning of the week to move on to new ways of pain control.

Thursday February 21, 2002 8:38 PM CST

I don't like to type when I'm tired, but this update is long overdue.

The surgery went OK, the doctor was able to remove about 80-90% of the tumor. It's looking like she wasn't able to remove enough to relieve the leg pain though, and we may have to move on to radiation to see if that will help.

Justin seems very tired mentally and physically, and I'm not sure how much fight is in him at this point. Constant pain just seems to wear a person down, and after three and a half years of fighting, he has to be so tired. I know I am!

We don't have a plan yet on chemo, but we should be starting within a week.

Wednesday February 13, 2002 1:22 PM CST

Just a very quick note....Justin will be having surgery tomorrow to debulk this new tumor. It is plastered on to the artery, vein and nerve just below the arota, so this will be a very tricky situation. I'll try to update as soon as possible.

Friday February 8, 2002 9:24 PM CST

Wish I could post some good news about the scans, but I can't. The ugly monster has reared his nasty head again. This time it is just below a kidney.

Wednesday February 6, 2002 9:11 PM CST

Well, I thought I should mention before it's too late, that in a lot of New York state, the Woman's Day magazine that's on the market right now...the one with a cake with the heart on it, has an ad in it with Justin's photo. It can be found right after the pull out herb guide. This is just a regional thing though.

Justin is still in a lot of pain, and we are getting no answers on this. He had more scans today, but it will be a few days before we get the results. I'll try to post the results as soon as I get them.

Wednesday January 30, 2002 8:41 AM CST

Well, scans were started a little earlier than planned, when Justin started experiencing a lot of pain in his bad leg, last week. We made a trip up to Syracuse on Tuesday, and though the doctor didn't feel the problem was tumor related, he decided to do scans then as long as we were up there. On Wednesday, they did a bone scan and a MRI of his left leg, and all scans were.........yes yes yes.......CLEAR! What the leg pain is about, I don't know, but his onc feels it's a neurologic problem. Tomorrow he will be having CT scans at our local hospital.

Thursday, January 10, 2002 at 07:58 AM (CST)

Things have been pretty quiet around here since Christmas, which went well by the way. I wasn't so sure if we would be home for Christmas for a while there, but we made it. Justin went into his second line infection the week before Christmas, and we were inpatient from Monday through Wednesday. On Wednesday afternoon, the doctors felt it was not a line infection, but just a contaminate in the lab sample. On Thursday morning, just five days before Christmas, we got a call from Syracuse that it was not a contaminate, and we would have to deal with it, hopefully with home IVs. Just minutes after that call, the doctor called and said they weren't even sure if they would ever be able to clean up his lines, and that they needed to be pulled right away. Sooooo, it was out the door and off to Syracuse with us. By 6pm that night, Justin was line free and hospital free. It was decided at this time that Justin didn't not need to run his last two chemos, but at first Justin wanted to run one more, and drop the last one as it was one he has been running for 18 months now, and he felt he might be immune to it by now. Well, when it was time to run that next and now final chemo, he changed his mind. He said he had a real bad feeling about what might happen if he did run it, and the oncologist also seemed to think that it might be best if we didn't. His regular oncologist has been telling him for the past several months that he has run too much chemo, and I think this had something to do with his decision. It wasn't very easy to just sit there and let Justin make this decision, but I felt that he was the one who has done all the work, and he is the one who knows himself the best, so I allowed him to call the shots. He knows this beast likes to return, and he has spent the last 18 months battling this relapse, so there is no way you can say, "he doesn't realize what can happen."

Justin will be going for scans on February 21, and unless something shows up before then, I probably wont be posting a new message.

Thank you all for your thoughts and prayers over the past year and a half, and may everyone have a safe, healthy and happy new year.

Thursday, December 06, 2001 at 06:10 AM (CST)

In three more days Justin will turn 12. Two days after that will mark his third anniversary for running chemo. In the past 36 months, Justin has run 27 months of chemotherapy. His head bald, his eyes sunken and dark, his smile still large with giggles that fill his mother's ears with hope and joy. Giggles are such wonderful things. These past three years I have watched child after child earn their wings, due to this cruel disease. I cling to these giggles.

When Justin relapsed, we were given a 5% prognosis, with the suggestion of not going on any further with treatment (this is from the rhabdo expert in Boston, not Justin's local oncologist). Quality of life was what they felt was most important. At this time Justin was in pain from a very large tumor pushing up into his hip area. Without treatment the tumor would only grow, pushing further into the hip area, and then it would be on to the abdominal cavity. This is an improvement in the quality of life? Why do they not consider the quality of the fight I wonder. If someone is determined enough to fight, respect that strength that goes beyond the 95% of the time, and let them push the 5% on to 6%. Never predict the outcome of the fight for life till the fight is over.

Justin is doing a great job of being his wonderful playful silly self. His chemo is scheduled to end in a little over a month. His scans are looking great, and will be done on a three month basis. He is very excited about having hair again, and has already decided what color he wants to dye it. Crimson red!!!!! I think what he can't wait for the most is having the tube removed from his chest. For some reason, this has made him feel very different from everyone else. I'll be pushing for it's removal just as soon as treatment ends.

His next chemo is a 6 day inpatient stay, and we will be running it just before Christmas, to try to avoid being inpatient due to fevers, on Christmas. This chemo is nasty, and it will probably be a month before we can run the next, and final chemo.

Tuesday, November 13, 2001 at 10:23 AM (CST)

I just got Justin's scan results this morning, and the news is good. Yippee for clean scans!!!!!

Monday, November 05, 2001 at 08:37 AM (CST)

Well, October seemed to be our month for unexpected admits. In the beginning of the month he was admitted for his first line infection, and after starting antibiotics at our local hospital, we were transfered up to Syracuse. We were then sent home to finish his IV antibiotics at home, and that saved us several more days at the hospital. At the end of the month, Justin came down with a cold, that put him into a fever, and then covered him in hives, so it was off to Syracuse once again for a few days. Right now he is still fighting the cold, but is slowly improving.

Justin will be having scans on Thursday the 8th, and if all is well, he'll run his last three runs of chemo. I'll try to post the results ASAP.

Friday, September 07, 2001 at 04:52 PM (CDT)

Well, Justin just couldn't let a Labor Day go by without a trip to the hospital. That's the third Labor Day in a row that we have been inpatient. He wasn't even upset about it, he just wanted to get some rest.

He's doing great right now, and will be admitted on the 14th for five days of chemo.

Sunday, August 26, 2001 at 08:49 AM (CDT)

Justin had his scans on Monday, and all is well. Yippee and thanks for the prayers!!!
Also, his counts are much better due to the supplements we are adding, so his doctor said to stick with them, and Justin was able to get his chemo. How strange it seems to be happy about someone being able to get something that makes them so sick! Justin's onc really would like him to complete his protocol, and with his counts staying so low, it was looking doubtful, but perhaps with the help of the supplements, this may be accomplished yet.

Friday, August 17, 2001 at 08:47 PM (CDT)

Well, it's been a long time since the last update, but nothing much has happened. Justin is doing OK, but his bone marrow is very tired. He had his first platelets since he started chemo. It is totally unheard of, to go so long on chemo without platelets, but Oh Well, our luck ran out. Justin also received two units of blood, and he had a bad reaction on the second unit, which happened to be the 4th of July, so now he has to be pre medicated before all transfusions. I have started him on some immune boosters in hopes of avoiding unnecessary blood products and to allow him the necessary chemo treatments. On August 20, he will be having scans and at that time, his onc will decide where we go from here.

Justin went off to camp last week, and it seems he made the news on the second day, when he presented Steve Christie with a picture from the camp. Steve Christie is a kicker for the Buffalo Bills, who donates money to the camp whenever he makes a field goal. Justin looked so happy standing there with Mr Christie's arm wrapped around him. Justin also caught the largest fish, a bullhead, that week. They also took the kids to a waterpark that just openned up this year. Gee, I wonder why he seemed so tired when he returned home.

Monday, June 11, 2001 at 07:31 AM (CDT)

Well, these past few months have been good for Justin. His counts are dropping very low, which delays his chemo runs, but this hasn't seemed to interfere with his quality of life. He was given orders to be a couch potato this weekend due to low counts, but he still managed to ride his bike (without a helmet on) and take a dip in the pool.

Sunday, March 25, 2001 at 09:15 PM (CST)

Things have been kind of busy since the last update way back in Febuary, but I'll see if I can remember some of what has happened since then.

When we went in for the new chemos, ifosfamide and etoposide, Justin's doctor explained that he wanted to pull off some of Justin's stem cell because his bone marrow is slowing down. He also informed us that radiation would begin in a very short time. So, we ran the 5 days of chemo, which went very well, and we managed to get day passes every day for a few hours. Then it was off to home for some major beefing up of the white cells for the next few weeks, and then back up to Syracuse for 4 days of inpatient to draw off the stem cells. In order to do this, Justin had to have a line placed in his thigh, which was left in for the rest of the stay. I was very concerned with the pain involved in placing this line, and for the time it remained in. HUH! Was I surprised when Justin had more fun over the next several days, than he's had in awhile. The line was placed at noon on Tuesday, and an hour later he was off for his setup for radiation. We then were allowed a hour and a half, and it was off for a CT scan. Justin wheeled himself all the way to the scan and back. Once he hit the floor again, he was off and wheeling up and down the hall for hours. One day he received seven traffic violations for speeding and trying to run over the nurses.
After three days of drawing off cells, we finally had enough to save, and we were released on Friday at 9pm.
The following week we started up the five weeks of radiation, of which we are half way through, and it was also time for yet another chemo run.
Some days we drive to the hospital, and then return home, and some days we stay in Syracuse at the Ronald McDonald House. (A great place to stay I might add)

Overall, Justin is doing good. He is looking a bit thin these days, and finding food that he will eat is getting harder and harder, but he doesn't seem to be lacking much energy most of the time. Today he took a walk with his brother up into the woods, and found a tree that was about 18 ft tall, and not too attached to the ground. Josh said Justin walked up to the tree, put his arms around it and yanked it out of the ground. He then dragged it all over the woods, and finally down to the house. It is leaning against the garage, and the top of it goes way above the roof. He is going to whittle me a wooden spoon out of it. Silly boy!!

Thursday, February 08, 2001 at 04:47 AM (CST)

Well, seeing it's been a month, I think I better add a little update before we are off to the hospital.
Justin has had a great few weeks, since he started his new protocol. Three weeks ago we ran a new chemo and though Justin was sick for the first few days, he bounced right back, and we were able to avoid the hospital for those fever runs that can make life so miserable for him. The last few days, I've had a hard time keeping him and Jill inside the house, and the other night he and Jill stayed out sledding till 10:30pm. Watching him sled down the hill and then climb back up again, you would never know he had surgery just a month ago. Today we leave for a five day hospital stay to run two more new chemos along with one we have run many times before.

Wednesday, January 10, 2001 at 08:32 PM (CST)

Well Justin had his surgery at Childrens Hosp in Boston a week ago on the 3rd, and is doing great. Two surgeons tore into both sides of his left thigh to remove as much tumor as possible, and yesterday morning he decided he no longer needed his crutches. Today they were used as guns and swords, but not for walking. He is also ready for a trip to the mall. Guess I don't need to say any more about how well he is recovering. We haven't heard yet how much of these tumors were still living tissue, but it will probably be a week or so longer. The doctors did say that the chemo has done a great job though.

We will be back in Syracuse on the 18th to restart up the chemo.

Sunday, December 10, 2000 at 05:59 PM (CST)

Justin celebrated his 11th birthday yesterday, and felt great! He had his last chemo for a while this week, and now it's off for surgery on Jan 3. His scans of the groin area showed no tumors, so that was good news. This area is of great concern to the doctors, as he had radiation there the first time around, and he did have a positive node in that area with this relapse. They are thinking of seeding the area with radio active seeds when he has his surgery.

Friday, November 24, 2000 at 07:57 PM (CST)

Well, we have a plan. Justin will be having surgery in January to clean up the tumor areas in his leg and groin. He will be having two excellent surgeons, Dr Gephardt and Dr Shamberger from Children's Hospital in Boston.

Dr Grier from Dana Farber was very impressed with the response he is seeing from the irinotecan, and he and Dr Marcus from radiology, were very pleased with the way Justin is handling the chemo.

We are off once again for scans on Monday.

Friday, November 17, 2000 at 08:16 PM (CST)

Sorry, it's been a while, but gee time flies when you're having fun. Justin completed another chemo run this week, and while in Syracuse, we talked to his doctor about having his surgery in Boston. We will be meeting with the surgeon on Tuesday. Poor Justin is still sick from the chemo, but he still had to go for scans at our local hospital today. I felt so bad, it's so hard for him to travel during this time. We probably won't hear about these scans for a while, but the doctor repeated the CT of the chest and abdomen, along with a bone scan.

When I talked with Justin's onc this week, he mentioned several other chemos he wanted to run after the surgery, so this is going to be a very long haul for a little guy who is getting very tired of all this.

I can't tell you how hard it is to drive past a school playground while Justin is on his way for tests or treatments.

Saturday, October 21, 2000 at 06:23 PM (CDT)

Well, we arrived back from Justin's Make a Wish Trip on Wednesday, and I must say, we all had a great time. The weather was perfect, and the trip was so well planned by the Make a Wish people. Justin and Josh caught several large fish, but a marlin was not to be had. Justin did catch a 50 in barracuda and a couple of dolphin fish, along with a giant grouper, and several other assorted finned creatures, so he was a happy fisherman to say the least.

On Thursday Justin's doctor called and requested Justin's next chemo run to be as soon as possible, as we had delayed a week for the trip. So, it was off to Syracuse on Friday morning, and we have two days down and three to go. Wish I could say this was an easy run, but it is not proving to be so. Lots and lots of vomiting. The scans which we ran the day before the trip showed lots of shrinkage, but there is still a little of something showing. Whether or not this is active tumor, or dead tissue, we do not know. Justin's case will be presented before the tumor board on Thursday, and then we will see what they have planned for us. There was mention of another biopsy to see if this is active or dead.

Thank you everyone for signing Justin's guestbook, it helps to know you are all out there.

Thursday, October 05, 2000 at 08:00 PM (CDT)

Justin finished chemo run number 4 on sept. 26, and the next move is to do scans on Oct 13, which happens to be Friday the 13th. On the 14th, we will be leaving for a Make A Wish trip to the Florida Keys to fish marlin. While we are gone, the doctor will contact the surgeon in Syracuse, and the doctor in Boston to see what they have to say about where we go from here. This is a major "where" and right now I am trying to not think about all this.

Justin's chemo run went much better with a lot less vomiting, and all his side effects seemed lessened this time around. He has been doing a lot of biking and running around, and I was so happy when I did the wash and found some very grass stained clothes. Got to love those stains!

Monday, September 18, 2000 at 07:19 PM (CDT)

Well, Justin is eating great and feeling fine, but his neutrophil count is low, so chemo has been put on hold for a bit. It seems we kind of tired out his bone marrow, but man did we do some major tumor shrinkage. Dr D said he will cut Justin's chemo dosage down from here on out.

Monday, September 11, 2000 at 07:46 PM (CDT)

Well, Justin decided Labor Day weekend would be a great time to visit the hospital with fevers, so it was off to Syracuse for us. He was admitted on Thursday, and remained an inpatient till Wednesday the following week. As the fever broke, he went into pneumonia, but that didn't keep the doctors from releasing him the day following the dx of pneumonia. I couldn't wait to get him home though, as he had not eaten for a week, and refused to spend much time out of the bed. We are just getting him to eat three meals a day, and his activity level is increasing, so he is on the upswing. He is suppose to start another chemo run tomorrow, but hopefully the doctor will hold off a few days.

During our hospital stay, the doctor talked of doing an MRI to present to the surgeon and Dr. Greir at Dana Farber, to see where we go from here.

Wednesday, August 30, 2000 at 09:33 AM (CDT)

On August 21, after two rounds of irinotecan, Justin's doctor could barely feel the tumor that was 20 cm long three weeks previously. The CT scan done that day showed a small spot was all that remains. The inside tumor, or lymph node (the doctors seem to be undecided as to which it is) is hard to decipher on this type of scan, and Justin may be having a MRI during his next chemo run. We are very happy this tumor has responded so well to the irinotecan.

Justin still gets very sick from the chemo, but this time they changed his medication, and that helped alot.

Saturday, August 19, 2000 at 08:40 PM (CDT)

In November of '98, Justin was dx with rhabdomyosarcoma, a very aggressive form of cancer of the muscles. His tumor was located on the bottom of his left foot, and was the size of an egg. The tumor was removed, along with another small tumor that was found in the lymph nodes of his groin. He then underwent 10 months of very aggressive chemo therapy, including actinomycinD, cytoxin, and vincristine. Half way into the chemo, Justin received radiation to the left groin, and the left foot. On Sept 23, 1999, his mother's birthday, he ended his last chemo treatment, or so we thought. On June 19, 2000, after complaining of pain at the top of his leg, a very large tumor appeared, and the fight was on once again. A second tumor, was also found on the inside of his leg, along with positive nodes in the groin.

At this time, Justin is receiving irinotecan in hopes of shrinking the tumors till they can be removed surgically. After the first chemo run, the main tumor remained the same size in length, 20 cm, but it did shrink some in width. He will be having scans on August 21, to see where we go from here.

Friday, August 11, 2000 at 08:00 PM (CDT)

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