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Justin & ButterflyMom's Story

ButterflyMan

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ButterflyMan : When Tragedy Strikes
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Message 1 of 11 in Discussion

From:

Butterflymom06 (Original Message)

Sent: 3/21/2005 1:57 PM

Well...I'm going to write about our Justin.

the Time is right for me...and will help me through my next part of healing.

So...here goes:

Hello:

I'm Butterflymom and I would like to share my families story.

so I will over the weeks...add to this story.

This journey...is a rough one, so there will be days

when the anger and fear will come forward again.

But Granni thank you for allowing to move further

in my healing...yet at the same time...

Knowing that these words will reach those who need to hear them.

I will start with...

I am a wife and mother of 6 sons,

and our 6th son was diagnosed with cancer in 1999

Cancer took our son and brother March 5th 2001 at the age of 5.

Cancer did not just affect Justin...but the whole family and our friends

Cancer KNOWS No age...and treatment dictates every minute and second of your life.

With any disease that strikes families...

Life does go on...just never the way it was!

Hugs

Butterflymom

First Previous 2-11 of 11 Next Last

Message 2 of 11 in Discussion

From:

Butterflymom06

Sent: 3/21/2005 1:58 PM

Well today I start...although I must admit...

I would rather just think....think of yesterday.

So instead of just thinking...I'm writing too.

Justin as mentioned already was the youngest of 6 boys.

The first 5 were in 7 years and then a gap...

You see Justin came to us when our youngest at the time

was 10. Justin was a foster child that came into our home

just under a month of age...He was born out of LUST with 2 very young children themselves 14 and 15, who didn't want the repsonsibility of a child.

Justin came to our home...under nurished...dirty...and and NO Love.

He entered our lives...Needing us so.... and brought nothing BUT unconditional Love.

The day Justin came home...the boys were estatic...for we fostered older children.

In fact at that time we had 13 boys in our home.

Everyone was so thrilled and look in their eyes...said it all.

Little did we know at that time...that YES...Justin was truly HOME

with his NEW family.

Justin was so mal nurished and weak that he could not even suck.

So hours were spent holding cradling...feeding drop by drop

and loving him....more and more each day.

The boys...would not even let him root (LOL) without running to see if all was well.

Justin brought to the lives of so many boys...'the throw away baby syndrom'.

I know this sounds harsh...but think about it...

a quick moment of LUSH...not Love and a child...Not wanted

Needing...but not recieving.

A lesson for all who came to know our son!

Justin progressed very well and with in 2 weeks...

Our Family Dr. made the comment...that he looked like my first 5.

Great job...he is progressing well.

Justin was the joy of everyone's life...he smiled... he giggled... and he laughed.

He was loved by so many.... a child...I know now...

who needed to come back to this world For his own lessons...

of recieving Unconditional Love...was getting JUST what he needed.

A child that came in to our lives...needing Love...

Little did we know what this child would bring to us all.

My husband got word of a transfer...having us to leave our home-town.

Believe it or not...Children's services...was not sure if Justin could leave with us.

After 2 years...a child only knowing us as a family...and they did not know.

Adopting was NOT an option at this time as they were working with Justin's

biological mother to see if she could take him back.

The Monday...3 days before we left to move the call came in YES...Justin can come with us.

But...I would have to bring him back... for visits with his biological MOM...

No problem...I would cross mountains and storms to give Justin what he needed

so a 4 hour drive each way is Nothing.

The move was made and yes...then the trips...first 6...

No visit from Mom... 4 hours both ways...and No call and no visit.

Well time for 7th and this lady says...Is the Mom coming??? call me if Yes...then we will come.

Well several weeks went by...no visits..then the call...Mom is pregnant again and really doesn't like boys...so she has given up her rights...Justn was now a crown ward...and was up for adoption. Well O.K. then...Yes...we want to adopt. Let us know.

Several weeks went by again then I received a call...well not sure if our family was the one for Justin...they will come and visit and see. I must add that the organization had Justin classified as slow. As both natural parents were classified, so the label was passed on to Justin. Well...I couldn't believe it...the only family this child ever knew...and they were not sure if we were adequate...Yeah...sure...want to play games...you got it...NOW I fight for the right of a small child...

Message 3 of 11 in Discussion

From:

Butterflymom06

Sent: 3/21/2005 1:59 PM

Now...Listen to what this women did...

The call came in to tell me when the visit would be for the Agency to come and talk to us about adopting Justin. Call me when you get to the Mall and I will give you directions to our house. Now the plan...the agency has already classified Justin so...I will give them what they have assumed.

I kept Justin up till 3 in the morning playing with toys...games and just plain playing. The poor child was exhausted. the next morning let him sleep til the call came in woke him up...gave him his bath...and knock knock...Went to the door...new workers as usual and then the fun began.

Workers trying to pick Justin up...Justin wondering whether or NOT he was having a bad dream or something...and looking for me everytime one of them went anywhere near. The workers tried everything to get Justin to walk...smile...or even talk...he just sat there looking at them searching for me...and crying for me to hold him.

Soon hubby and boys had to come home for this interview...so enters Dad. He looks around says his HELLO's comes over to me and Justin and just looks at Justin wondering what was wrong. I gave the look...you know the one Mother's come up with that says...quiet PLEASE!

Mean while then comes the boys all 5. Justin by this time is really starting to wake up and once the boys come in that is it... So meeting quick...

The agency says what they have to about adopting then adds...And we feel that since you and hubby are older...there is a great chance that someday Justin may have to come back to our agency. If something ever happened to you who would take care of Justin.

WELL...I sat back...smiled as my second son piped in as if on key..."EXCUSE>>>>ME>>> you and who's army will try to take our brother from us?" The boys just looked at each other...then at the workers then took Justin and went down stairs.

Well I must add...no-one in the house...knew what I was doing...so this was my own plan of attack. The meeting didn't last too much longer...Workers headed back on their 4 hour drive and said we would hear from them soon.

Boys were playing down stairs with Justin...'BUCKETS' a game you put on hockey helmets and hit each other...I know not great...but that is the game. LOL Justin was beating all of them up when the workers called down to say good bye. The boys came to the bottom of the stairs and waved bye...Justin again in the arms of number 3 son just looked at them...and they left.

The next day...early morning...I received a call..."we (the agency) did not know how delayed Justin is...we would have problems finding a home for him so if you would like to adopt YES you can"

Thank You Very Much

A Mother Does what a Mother has to do!

So Adopt we did..and within the month all was finalized...and the priceless thing was...the agency from our hometown came as well. I wish you could have seen the faces of the workers. Here is a little 2 year old...running all over...dressed to the nines...with all his 6 foot brothers and Mom and Dad there...running to everyone saying..."I'm being dopted taday, we is having a party"

Did he know what adopted meant NO...he only knew we were having a party!.

See...when people assume things...it usually is wrong. They assumed Justin was delayed...so I just helped them to see what they already believed... BUT...Justin was far from delayed...he was a child born... Out of Love... not In Love...but given so much that he caught right up and surpassed many children his age...because of it. I guess you can say...he was OVERDOSED with Love...everywhere he looked.

That is it for today...Till tomorrow I Wish you Enough!

Hugs

Butterflymom

Message 4 of 11 in Discussion

From:

Butterflymom06

Sent: 3/22/2005 12:54 PM

Now where was I...oh yes...Justin is ours...

But...he was all along. From the moment I went to the agency to pick up this precious bundle...

He was OURS!. Just now all the legal papers. Not born of me...but instead...born deep in the souls of my heart...a bond forevermore...a mother and her child!

Now life went on...Justin grew to a beautiful well rounded child. Always loving the company of people. He went to school on his first day...so excited...but complaining of a sore arm. Thought perhaps through all his dreams of school and friends.his tossing and turning that he slept funny on the arm. His day was great and his excitment wasn't complete until he came home on the school bus. Coming off the bus...I noticed again...that he was holding his arm funny. But said nothing at that time...as he was too excite...had to tell me about his day...his new friends and his teacher... Mr.J So much to say...not enough breath to get it all out.

Walking the length of our driveway I heard about 3 different classmates that were his friends...his teacher who really likes him but he likes everyone...but he likes me...I think ME the best...as he sniggered and showed me some work he had done. Justin was just so excited to be finally at school.

That night he complained about his arm being sore...we check the full range and all was working so we again let it go. But that night he awoke in pain. His arm was so sore...he could hardly hold it up. I decided to drive him to Emergency department to have it looked at.Thoughts of perhaps in his play he dislocated it and it popped back into place. There were no swellings, hot spots, or bruising, but not normal for a young boy to have such pain. 5 hours in emergency...waiting to be seen, then the Dr. on call comes over...does the same range of motion and checks for any indication of problems. All looked well. I asked for an Xray...and with some hesitation on her part...we finally headed off to xray. By the time all was done we had spent 7 hours at the hospital and it was now 4 in the morning and we were still waiting to talk to the Dr. She finally came over and by this time Justin had fallen back to sleep. Her exact words..."He looks fine now...can not see too much...Xrays fine...so maybe see your family Dr. perhaps he has Juvenile Arthritis..Hmmmm was a long day for me as well..so this comment didn't go over well. Why would you make a statement like that??? Perhaps we should have blood test or something done. There are NO signs of Arthritis and this pain is real. Well I guess that was my first mistake...I questioned.

Well boy was she upset...just take some pain killers and see your Dr. I told you what I thought. Not RIGHT...why would you say that...because I can not find anything wrong...What??? this is even more frustrating than the actually diagnois...which has no findings behind it. BUT NO BLOOD WORK...didn't feel it was necessary.

Went home and put Justin to bed by this time it was 6:30 a.m. so no school today for him. I waited till 8:30 to call the Dr to make an appointment. 3 weeks...I explained that we were in Emergency last night and that we needed to see him. Told sorry...if we needed to see a Dr. that bad...then go back to Emerg or go to the walk in clinic.

Oh boy...never had this problem back in our hometown...but here we are...waiting. Watched Justin the next day and noticed now a leg was sore...there is something definitly wrong here. Was extremely upset...so called my cousin who could get us in touch with a Master Herbalist. Which she did...I talked to him...eneded up crying and having to call back...just explaining how NO-ONE was listening. Told him something was very wrong...what... I was not sure...but a very healthy young boy...can not go from running around one day to aches and pains the next. Wanted to know if he had some immune boosters I could have...as when someone gets sick the first to go is the immune system.

By the end of this conversation...we were making plans to leave to see this Dr. who was first a General Practitioner, then Surgeron and now Master Herbalist. So he has both sides of the story here.

Off the next day...by bus for a 8 hour long drive. Got to see the Dr...talked for about 1 hour. Justin was assessed and had some immune boosters for him to take.

For the next 3 weeks before we got to see our family Dr. Justin had another sore arm...opposite one...then the opposite leg. By the time we got to see the Dr. he had gone through all the limbs one at a time being sore...and crying with the pain.

Explaining to the Dr. what was going on...and in fact keeping notes. I knew in my heart something was very wrong. Again...this lady does the wrong thing in the eyes of the Dr. I gave him my notes...Short sweet and to the point. He looked at me...just put them down...looked at Justin and started to move his arms in a range of motion gestures...and looked at Justin struggling to move his arms in every direction he asked BUT...with HUGE tears in his eyes.

The Dr. then looked right into Justin's eyes and said..."Hey there...you are a BIG BOY...don't you cry!" I wanted to punch the man in the face. I had to take a deep breath...he wasn't crying...he was doing his best to move his arms in all directions and the pain was so much that he had tears..

Gosh here is man that should have some compassion and tact...and this is what he says???

Oh brother...He said to me he didn't know...looks good to him. I then said well maybe we should get blood work done...and again a 'booboo' a mother...giving suggestions about her child who she knows better than anyone else. The look...well who cares...I'm upset now...so I want something done...you don't know... so get me somewhere who can figure this out. With some hymming and humming he was going to make an appointment for us to see the Pediatrician. So wait for a call.

Message 5 of 11 in Discussion

From:

Butterflymom06

Sent: 3/22/2005 12:55 PM

Surprisingly I received a call with in 2 days. I was shocked when I heard the receptionist say this is the Peadiatrians Office and want to give you Justin's appointment time. First however we need more information. Answered her questions and then was told Oct 28th. Hello this is Sept I need to see him before that...Well...if you need to see the Dr. before then you will have to go to Emerg or a local walk in clinic. Oh brother here we go again...WAIT!...Will anyone ever listen???

The next month was terrible. Did go to Energ and walk in clinics...and got no where...Never once would anyone give us some blood tests...That is all I wanted...BUT NO...not necessary, and of course the good old Jeuvenile Arthritis was coming up...You were told that was the problem. Hello...don't you think we need more tests then??? At least just NOT the word of one Dr.

Justin awoke one morning crying in pain. Justin was the type of child that never cried...so when he did you ran...you knew something was VERY wrong. As I picked him up...he screamed..."EVERYTHING HURTS ME MOM HELP ME PLEASE HELP ME" My heart broke...I'm doing everything I possible can and no-one will listen.

Grabbing at straws I decided to take Justin to a Chiropractor in our area...perhpas he can do something to allivieate the pain...Just let my little one be pain free for one day. We went...I explained the problem and as the Dr. was assessing him...he looked at me and said...I would love to work with Justin but only after he sees a medial Dr. Again Wait...I NEED HELP NOW!

Calling everyone I could think of...even calling the Family Dr. again...but being given an appointment in Nov. Why would I come to that appointment in Nov. when I see the Peadiatricain in Oct??? Well then go to Energ or the walkin's...I have...Nothing. What is wrong with you people??? Well very clearly and to the point...Mrs. you can bring Justin in Nov. if this is not good for you...I'm sorry then. I just hung up...I was crying...mad and frantic trying to find help for my son.

Then I remembered seeing something about another Chiroprator in the down town area that also did alternative proceedures. After rumaging through the weeks papers...I found her number and called.

As soon as the receptionist said hello...I started crying...trying to get out what I had to.Crying and sobbing saying I need HELP for my son. I soon was on my way to see at least someone who took the time to listen.

The receptionist who had Level 1 Reiki and the Chiropracter who was a Master in Reiki were waiting for us. As we enterd...me carrying Justin as he could not walk now, and when I stood him up I could with a finger touch one hip and have it dislocate then put it back and do the same to the other one.

The 2 of them along with myself did Reiki on Justin for 1 hour. I had my Level II and although I was using Reiki daily on Justin needed HELP! Justin for the first time in a week...appeared relaxed and free of pain during the treatment and then again for 3 hours after. When he would cry out again because of the pain...and yes...he was taking Tylenol for the pain but it was doing nothing. He would call to me...Mom I need More Reiki!

This went on with daily visit to the only Dr. who would listen and Justin actually was getting relief. Then came the Peadiatricians appointment. Before we went there we went for out daily dose of Reiki then off to the Dr's for his long awaited appointment.

Message 6 of 11 in Discussion

From:

Butterflymom06

Sent: 3/22/2005 12:55 PM

I kept one of my son's home that day to help me get to the appointment. My back was broken from carrying Justin and besides...I was an emotional wreck. Now I should explain here...when I get really upset...two things happen...I curl up or I fight...words are my weapons and I use them well. Not always helping us to get ahead...but certainly letting people know where I stand. I find it easier telling the people I am upset with face to face...so believe me...now some people were interfering with my son's Health...so I am a Momma Bear protecting her own!

So with an extra 2 hands and muscles with me off we headed for our appointment. Got in had to fill in a form...did that then went into a room. Soon a Dr. came in but a Resident in training...he was there to ask the questions and then tell the Dr. once he comes in.

I started to explain...in fact like before keeping a diary of events. Short and sweet. I guess I should also add that I am a Registered Nurse...so what I presented was factual. The First Dr. looked at the sheets then looked at me... put them down...then proceeed with his questions. My Son who came with me...just kept looking at me...saying nothing and wondering why I was so calm.

Finally the Dr. came in...The first Dr. started to repeat what I said...and I would say..."I never said that!" continue on...I NEVER said that...this went on for a few minutes. The the Dr. asked me...then you tell me in less than 1 minute. Hmmm...again parents who explain facts and truths are considered...irresponsible neurotic fools. Well NOT THIS TIME. 1 minute or less. O.K. I had a Healthy child running and playing now I have a very sick child that has pain every part of his body! That about does it...and in less than 1 minute. The Dr. just looked at me...and by this time my 5th son was backing away. Mom is building up for the KILL...Yes KILL...this time someone is GOING TO LISTEN. Because if they don't No-one is leaving this room!

The Dr. asked me to place Justin on the examination table..pushed and prodded and then said..."He certainly does not have pain now!" Said nothing... as I knew that he was going to get Justin to stand...which he could not!...Yep I was right...O.K. could you please have Justin stand infront of your knees. Have him hold your knees I want to see about this hips stuff you said. As I was getting Justin up...the Dr. added You know Mrs. V hips do not move around like you said, and sometimes kids can pull the wool over their parents eyes!...Daggers...my look could have stuck him right there...BUT...you want him to stand...O.K. then stand he will try!

I stood Justin in front of me...with all his Might...his arms trembling he stood with NO pressure on his legs...his eyes filling with tears because of the pain...but doing exactly what the Dr. ordered. I then with my finger lightly touched one hip...put it back... touched the other then put it back again.

THEN...I looked up...Looked at the Dr. and said..."It Isn't Suppose To Be Like THIS!"

Well now I had someone's attention. He just stood there. I called to number 5 son and asked for him to give me the diary and passed into the hand of the Dr. saying...maybe NOW you will read this. I WANT Blood WORK and NOW!!!

That's it for today..

Feelings of Anger and frustration are coming flooding back...

but don't you worry...

This Too Shall Pass.

Hugs

Butterflymom

Message 7 of 11 in Discussion

From:

Butterflymom06

Sent: 3/23/2005 12:30 PM

It is with heavy Heart that I write today. For today is the day my Friend lays her son to rest. Oh how grief, fear and anger can creep in so suddenly.

But today...I take another step...For I will conquer this part of my grief....

Down we went to the lab to get the blood work that now was being requested. The one that I asked for since the end of Sept and had to wait until my son could no longer walk to get it. Down we go with a list as long as my arm. I just hope my poor child has enough to give.

We left after tests were all done. Justin tired and feeling rotten. We drove the 45 minutes back to our house in silence. 5th son sitting right next to Justin with tears in his eyes...knowing too that his little brother was very sick. Me just trying to remember to breath...tears coming and going...driving...hoping our home would bring some refuge to our crazy world that was now before us.

We walked into the House...me carrying Justin and number 4 son says the Dr.'s office called. He wants you to call back right away...something about Justin's blood work he just got taken. Here we go again...now that I have someone's attention...the calls are coming in. Putting Justin down on the couch and making sure he was comfortable I made the call. Taking a deep breath when I waited for the Dr. to come to the phone. Many things went through my mind in the last month. Thought perhaps Justin had C.P or another neurelogical disorder. Not sure what...BUT knew in my hearts of hearts that MY SON...was seriously ill.

The Dr. finally came to the phone and said...Mrs.V we need you to take Justin to the main hospital as his blood tests show he is very low in calcium. Not sure what the problem is but we will have to do more tests immediately....Well make all the arrangemnets and I will bring him in first thing in the morning. Mrs. V. I believe that you should bring him in now...Well...one more night is certainly not going to hurt...remember Dr. no-one thought there was a problem for a month...so as I said I will see you tomorrow morning at 8:00 a.m. The Dr. agreed and I just broke down in tears. trying so hard to contain myself...but everything over the full month coming to a head. Glad that something was finally going to be done...yet at the same time...FEAR...Not knowing...but in my heart knowing something is terribly wrong.

My other son's gathered round. Hugging and telling me it is going to be O.K. trying to help this Mom who always was strong...always with answers and solutions to the problems that come up in our house hold. The ROCK...Well this rock was falling apart...and she needed time to think...so the boys went to over see Justin's needs and I went for a walk out back.

When I returned hubby had come home form work. Boys had told him what they knew and he came with a hug and kiss...as though he could make it better. Stop...this is NOT his fault...but GOSH...I need someone to be mad at. Again...tears...saying we are in BIG trouble here...I can feel it. Hubby doing the best he could to comfort me...yet knowing how I am and I needed my space to figure things out for myself in my own way and my mind.

Supper was quiet...Justin seemed to have a good night as I prepared to bring my son to the Hospital.

Next morning off everyone went and I took Justin to the Hospital. All paper work in order and so it went quite fast. We were on the floor within 1/2 hour.

On the floor now starts all the picks and pokes...Poor Justin's viens were just as bad as he felt so picking and prodding they did. Finally at one point I said...HEY...if you can not get it this time...forget it. Or else give me the darn I.V and I will do it myself. The look came again...One asked if I had medical background.Said yes...Specialized in Peds...so really could do this stuff myself. Poor Nurse...perspiration dripping...she finally got the vien and we went back to the room.

Shortly after the lab now came in...Oh brother...more picks and pokes. At this time...the technition asked..."When did you think your son was diabetic?" what??? he is not diabetic...yes he is that is what is on his admission sheets. Let me see that...this is WRONG...He is NOT hypo glycemic...he is Hypo Calcemic. That is why we were told to come here. Sorry that is it...No More blood nothing...get the Dr. there is something wrong here.

Soon the room was full of nurses from the floor telling me that I had to let them do what they are suppose to...OH NO YOU ARE NOT...he was not admitted for diabetes so until I talk to the Dr. that is it. So good BYE!

Later that evening the Dr. came in...first question from me ...what is this stuff about Diabetes? He was wondering what I was talking about. They did not even call. No Mrs. V. not hypo glycemia...hypocalcemia...well you better tell the staff then because someone wrote the diagnosis down wrong. He then grabbed the admission sheets and shook his head...NO..this is wrong.

Until Tormorrow

I wish you ENOUGH

Message 8 of 11 in Discussion

From:

Butterflymom06

Sent: 3/23/2005 12:30 PM

I feel compelled to write today...perhaps it is just a way of keeping my mind off of Darryl's funeral. So instead of curling up today...I will write some more.

With the diagnosis now in tact the lab returned to do the blood test the Dr. had order. Since the Dr. was present when they arrived...a quick...make sure you get everything you want...because this is the last time Justin gets Picked for a few days. So check the order and add if you want now...because in an hour or tomorrow the answer will be NO.

Dr. checked the order...added a few more things and said he would see us in the morning.

Justin was just exhausted with all the goings on so rested what seemed to be rather peaceful. Soon all 5 brothers and Dad came in for a visit and Justin really seemed to perk up. This was my cue to run down stairs for a break and a long awaited smoke break. Hubby came with me we grabbed a coffee smoke 2 cigs very fast and headed back up the stairs.

It was nearly time for visisting hours to end...so the boys and Dad bid their farewells and told both of us they would see us tomorrow.

After they left Justin and I played a few board games then read a story then lights out. Well anyone who has been in the hospital knows there is no such thing as lights out. People in and out all night long. Then comes the Pick Lady...no way...told you No more for a few days...no discussion JUST no more!

Now I think I had a name there...probably one that should not be repeated but non the less...that is it. I really didn't care.

Next morning the Dr. came in bright and early told me that he was hoping to receive the results today of all the blood tests. I asked him if he had ordered more...he said NO and then I told them they had come back. He said he would check why....well back to the wrong diangosis on the chart on admission...came to check his blood sugars...Oh well...better get that changed...because I said NO MORE PICKS for awhile!

The day was very long...just waiting and waiting. Soon hubby and boys came in again and at least again another chance for me to run outside. They came in...I ran outside.

I went back upstairs to find the Dr. there. He began by saying that for some reason that they were NOT aware of Justin was losing calcium from his body. He was consulting with some colleges and would get back to us the next day in what they want to try.

We agreed...off went boys and Dad and Justin and I settled in for aother night at the hsopital.

The next morning the Dr.came in and said "we are going to release you until we get more conclusive tests back" I agreed and began to pack up some of our stuff. Called Dad at work and he was going to pick us up in 2 hours.

Home we went...Halloween night...Justin not feeling great but wanting to put on his costume. Not going trick or treating just wear his costume.

The next morning the phone rang. Mrs. V. we need you to bring Justin back to the hospital. Just go straight to the floor as all the paper work is still there. O.K. and again prepare for another trip to the Hospital. Left a note for Dad and boys and off Justin and I went.

Got to the hospital...and soon once back in the same room a nurse comes for me to sign for a Lumbar Puncture...NO WAY...will not... want to talk to the Dr. first. Mrs.V. that is why you were re-admitted. Sorry...I guess he should have said something before he told me to come back. If you would like us to leave...so be it...BUT I'm telling you right now... NO Lumbar Puncture! Nurse left..quite upset I must add...muttering something about not letting the staff do their job. Sure they can do their jobs...but someone better inform me first. That is my job to make sure my son is well and safe...so take the time to explain what and when you are going to do things then this lady and you will get along fine. Until that time...BYE!

The Dr. came in about 5 and shortly after Justin's brothers and Dad also came in. The Dr. was trying to explain to me that maybe they could find something that way. I said definitely NOT...have a better reason...not checking reason...then maybe...but NO. Hubby at this time...piped in that perhaps we should go a head and get it done...just get as much as we can right now...Daggers...NO WAY...I'm the one with the medical back ground NOT YOU...so right now not in the mood. NO! Dr. said something to Dad then said bye. I needed a ciggy butt real bad so decided to go out for one while Justin had family next to him. My last words to brothers as Dad had decided to come with me...was DO NOT LET THEM DO ANYTHING TILL I GET BACK! Agreed so off I went to sit and NOT think...just try to slow my mind down...DO NOT THINK!!!

But...Dad had other ideas..wanted to talk about the Lumbar and getting it done. I was mad as H*** God...I just want to sit here. Don't talk. Well the next words pierced my heart...Well I'm the Dad I have some input here! That was it...all that had gone on...now when I needed my hubby the most just to support and say nothing...this is what I hear. Then it hit me like a ton of bricks...that is what the Dr. was talking to my husband about...getting me to agree with the proceedure. Again...now really angry...I have the medical background...not you...when he wants to explain to me WHY....then I will think about it. Lumbar's are painful and you sign a form...they can cause permenant damage...so this is one I will wait...until I feel it is right! Dad was NOT too happy but again knowing me...and seeing the She Bear come forward in full force...backed off. We sat in silence for one more ciagarette then went upstairs.

The Dr. rushed in almost right behind us...I turned and said...."You lose...The answer is NO and Don't ever play my husband and I against each other again" Boys knowing mom too well came and stood on each side of me. Gently rubbing my back and making sure I knew they were there. You know that pushing right in next to you feeling. The Dr. looked said nothing until older son said...Mom said NO so I guess that is it for tonight! Silence...and off he went.

Message 9 of 11 in Discussion

From:

Butterflymom06

Sent: 3/23/2005 12:31 PM

Finally morning came...after another long and restless night...waiting wondering and crying to my self...realizing that we were in big trouble...and how was I going to fix this one. BREATH....just BREATH!

The Dr. came in early as other days and said perhaps I would agree to a full body X-ray. I agreed right away...just set it up and Justin will be ready. That afternoon they came to get Justin so I decided to run again outside...for some air and a ciagarette. It would take about 1/2 hour...so just needed 'Me' time. Had 2 just sitting by myself...not looking at anyone...because I didn't want anyone to talk to me. so trying to keep my eyes down as not to make eye contact with anyone.

Went back upstairs and just sat next to where Justin's bed would be and within minutes he was back. Big smile Hi mom I'm back.

Did whatever for the rest of the afternoon. Justin had a couple of little sleeps and I just sat there...alot of times just staring at the walls...trying not to let my mind wonder about...had enough right now...certainly could not deal with more thoughts of what could be.

Boys and Dad came in for visit...told them all that Justin went for X-rays and Justin began to chat like no-one's business. My cue again to get outside for awhile. dad came again...got our coffee and just sat...at first saying nothing...then...we have to do this together...I agreed, but added...you like to see things on paper...I go with gut feelings and what I know with my background. You have to trust me...and let me make the decissions unless you want to take my place here at the hospital. I really do not have the energy to explain everything to you...step by step...you ask the Dr.'s if you want more answers than what I give... I just do not have the energy. We seemed to understand each other sat for another ciagarette then went back upstairs.

The boys left and Dad stayed longer..him and Justin just reading playing games and me sitting in the corner watching. Then the Dr. came in...hmmm strange...but there he was. Came in with that...Oh Boy We Have A Problem Look. I took a deep breath..he said he wanted to talk to us in another room I said no here was fine...then he proeceeded.

Justin shows a fast growing malignacy...we are going to make arrangements for you and Justin to go to Sick Kids or Ottawa your choice" wooooow thought of everything else But...Never CANCER! My heart started to pound...I had to leave the room. Nurses were watching from the station and I just needed to get away...go by myself and try to Breath...just needed to breath. Not sure how I found some empty conference room but I did...went in there...looked out the wondow and cried...what the H*** is going on??? Bad dream that is it... all a Bad dream....God this can not be happening. Not sure how long I was there then made my way back to the room. The Dr. was still talking to hubby and I came back. Justin was just going about his business playing. Dad was talking and I just watched...wondering if soon I would wake up...this is not happening. Dr. asked me if I was O.K. said yes...then when do we leave for Toronto? I pick Toronto? Said that he would make the arrangements tonight and we should be leaving first thing in the morning. Gosh got to go home and get somethings...need to pack or something...Dr. left said he was sorry...and Hubby and I decided he would drive me home get my stuff I would fly with Justin he would come by bus the next morning and together we would see what the Dr's in Toronto had to say.

Went home...made a few calls...Friend came over with her husband...Boys had called some people as well...still not sure who called who. Friend was really supportive asking if there was anything...and not to worry about home as she would make sure boys are eating. Said I can not believe Justin has Cancer,,,Hubby siad...why are you saying that??? we do not know that for sure. Hmmm can't go there...you heard what you heard and I heard what I heard. I packed or thought I did...thank gooodness hubby checked...because I have 1 underwear for me 1 new pair of socks and that is it...I had tons for Justin. Hubby threw in a few more things for me and off I went back to the hospital. Boys were great as usual...telling me not to worry...they would come up in the morning if we were still there.

Well yes there we were...believe it or not...first snow storm of the year,,and everyhting was cancelled...another day and night in the hospital here...more waiting and waiting. Even the busses were cancelled...so hubby spent most of the day and into the wee hours of the night at the hospital with Justin and I.

Next morning looks like it is a go...so Hubby left to get the bus and Justin and I waited...yes you guessed it waited and waited...finally word came they are coming for us now...Ambulance transfer to airport. Off we were...Justin again...taking everything in stride..."yeppii MOM we are going in the amboolunce this is fun...think they can make it sing???" Don't think so Justin...they do that to make people get out of their way for emergencies. "Mr...hey Mr...I'm a mergeny eh???could you make the amboolunce sing?" The attend smiled and said let me see what I can do...talked to the driver and before long...the Ambulance was indeed singing...and Justin was just exstatic...smile and giggling to himself!

Finally on our way...plane up in the air...again Justin just so excided with all that was going on...and talking to everyone...asking tons of questions...and half the time not even waiting for answers before the next question came flying in. The flight was good...attendant and pilot were just great...and Justin got some Pilot Wings to put up on his wall...which again had him so happy!

Arrived at Sick Kids...and ready for what ever lies ahead...or so I think...

Thanks that is it...for today...Thanks for listening. Hugs Butterflymom

Message 10 of 11 in Discussion

From:

Butterflymom06

Sent: 3/24/2005 3:11 PM

The next week and a half were unbelieveable. Tests and pokes...more tests and X-rays. Everyday something else...and the Waiting..that is what really got me...waiting for answers and results from all the tests.

Justin went for body x-rays, he had MRI, Cat Scan, Untrasound, Bone scans, Heart monitoring, Kidney function tests. liver functioning tests...and you know what...I'm forgetting tons. Each day something repeated or something new...this child was a pin cushion...just waiting for the next attack. But through it all he just took the picks and pokes...didn't like them...but took them. With a deep breath he would close his eyes and say...go! One of the Lab technicians came in one day and said...I know Justin you proabably hate to see me...His answer stunned ever me. "...NO I just hate the Picks...I like to see you" With tears she picked him again. I just looked the other way...tears streaming doen my face...amazed at how well he was taking everything.

Then the dreaded day...Dr's came in my the 9's...Oh, oh we are in trouble again. Mr. and Mrs. V we will have to schedule surgery tomorrow...it does appear that Justin has a Sarcoma and that we need to biopsy it and also place his 'Port' in. A Port is a small gizmo that is placed usually on the right side of the child's chest, under the skin. This is where all the treatment and also blood tests would be taken from most of the time. Helps alittle in the picks and pokes. Oh brother...and his legs???? why is he still not walking? We have Ortho coming in some time today to look at that.

What do you say??? Just take in the words...place them where ever and look blindly into space.

Ortho did come in about 1 hour after that visit...Still in shock and disbelief...3 of them come in. We are here to check out Justin...From top to bottom...pushing here asking him to push... pull stand... sit...you see Justin had progressed now to having to have assistance to sit...or he would topple over. They checked him from head to toe and did it again. Being a Nurse...I knew that either this the BEST hospital in the world or they found something else and were trying to figure out what to do. Again I'm right....within 1/2 hour..in came tons of Dr.'s again. Please both of you come with us...we would like to discuss what we would like to do right now. Taking a deep breath and really looking around for an excape route...I really didn't feel I could take any more. But followed them all to the 'Chat" room. Hated that room immediately. The room where the hammer falls and there is absolutly Nothing we can do.

In the room our Primary Dr. began to talk...not even sure what he was saying...I was just looking at all the people and trying to read something in their eyes...the eyes tell it all and believe me the eyes were trying NOT to look at me. My husband was listening intently and then like a BONK...I focused on the Dr's and their words. By this time I think 3 had aready talked, and now it was the Orthopedics that were talking. I turned and listened...Justin has Many tumors on his spine. We need to do surgery right away..as soon as possible...if we don't do it now then he will be paralysed from the neck down and we would then have to put him on a respirator. I squinted...I remembered squinting...I guess hoping that maybe my ears were hearing wrong and that this was just another terrible dream and that I would wake up. Mrs.V. do you hear us...we need to do surgery right away. As crazy as it sounds I said...But he is going tomorrow can it not wait? NO Mrs.V Justin's tumors are spreading very quickly...they are spreading daily. Oh brother...I looked at my husband as though to ask...hey do something here...don't sit there...do something...Struggling to hold back the tears...that lump in the throat had now spread to my chest...THIS CAN NOT BE HAPPENING...Dear GOD...Do something.

A bout a few minutes passed, Hubby spoke first and said we have to do what is right by Justin...he looked at me and I agreed. Then 'Primary' said O.K. we are going to start Justin on Morphine for the pain...Oh No You Are NOT...he has had none all the way... he is not going to start now. After surgery yes for 24 hours hours PRN and I'll tell you when, but before that NO WAY! NO...NO...NO... Guess my mind clicked back in but I was adament...NO Morphine right now. Hubby looked...Dr's looked and I said I have to go back to Justin... when is this surgery... in one hour we are just setting up...and we will do everything at the same time...so no surgery tomorrow. How many Dr's 4 teams...each doing their own thing. Gosh that is all I could take right then so I left.

I looked over my shoulder and saw hubby talking to 'primary' and 2 other Dr's just kept walking...dear God in Heaven Take care of my BOY!

I was in the room when a nurse came...she said nothing quickly went to Justin's I.V. and I turned around to see her inject something...what is that??? Morphine the Dr. ordered Morphine and your husband just agreed.

WELL...this lady went bonkers...get out...out the door I stomped...Look at my husband and said this is the last time you will ever... do you hear me... ever...over step me in the medical field. And you...all of you listen good...You ever do this again...I swear I will take my son out of here and you will never see us again. I was so angry that I had to leave...get out of the hospital.

I had stayed next to Justin all the way. Going out maybe 2 times except at night when he was sleeping...this is when I would go out and sit at the piller next to the hosiptal and just smoke my brains out...looking into the dark skies...smoking... crying and smoking again.

Hubby's work when they heard of Justin's transfer to Sick Kids...immediately got a room at a hotel for us to stay in. They were covering the costs and Hubby was staying there most nights. I just walked...headed to the hotel...got a key and went to the room.

Scared out of my Wits...Angry and frustrated and NOW....NOW this...I can not even trust my husband. and this is exactly how I felt.

I paced...I swore...I swung my arms...the phone rang...Hubby...Justin needs to go for another MRI are you coming back to go with him...No I Am NOT...you know everything you do it...and hung up. Again all the anger came rushing in like tidal waves rushing over me...but unfortunately not wiping me under which right now...I wished it would. Just get me out of here..what the H*** is going on?

Before long the boys started to call...I guess Dad called and told them what had happened...Mom you O.K. was the question I heard over and over...O.K. NO I am NOT...and now I have to fight your Dad too...I'm fed up...he is dead meat when I see him again...I just hate everyone right now...and really do not want to talk to you. and hang up again...phone rings another son...hang up phone... rings and now my Mother...I do not even want to talk to you...whay are you calling??? didn't hang up on her...she is my MOM and I could never do that to my Mom...I guess this is where reality slipped back in. Mom called and I had to listen...Hubby is trying Hun...he is just as scared as you...you know he needs to see things on paper and that he trusts those who have gone to school to learn specialties...Doesn't make them right...I piped in...I know...but you have to give alittle too...I know you...your kids are your life and you will fight the world for them...Remember Justin is also hubby's. So take time...think...he wants what is best for Justin too. K...tears flowing too freely now... don't want to talk anymore...she was making sense to me...and right now...I needed to be mad at someone...so hubby is the closest right now.

Hung up then the phone rang again...GOD this D** thing...I wanted to rip it out of the wall. HELLO...Justin is going for surgery in 15 minutes...he needs you here we could not even do the MRI...he kept saying no way where is my MOM. I hung up the phone...ran to the hospital one block away and to his room. As I entered on the floor...nurses and staff were staying far away...I ran to his room and Dad stood up..Justin was crying and he was trying to sooth him...then I hugged Justin and told him Mommy was here...don't cry....

Message 11 of 11 in Discussion

From:

Butterflymom06

Sent: 3/24/2005 3:11 PM

It was 10:00 p.m. when they came for Justin. We went to the operating waiting room where the children wait until the room it totally ready. I was explaining to the best of my ability to Justin what was going on. He just kept saying..."Mom I need you ...don't ever go away again!" Trying to be strong for my son...my heart breaking...not knowing what will happen tonight...I just kept hugging and kissing him...him in return giving back the hugs and kisses. Then the Nurse came Justin you ready? He looked at me...with BIG tears...yes...Love you MOM...and Dad Love you too. That was it for me...I just broke down sobbing...hubby tried to hold me..but I just pushed him away...he had me so mad...that I did not want him touching me at all. The nurse came and lead us to a waiting room for parents waiting for their child during surgery. It was late...so the room was rather empty. A few people here and there...all sleeping. I just went to sit...my mind totally confused and thoughts running in every direction...not really knowing what is right or wrong. The nurse said that she would come out ...off and on to tell us what was happening but that we were in for a long night...so try to sleep some here.

SLEEP...Right...what was that? I don't think I have slept now for more than 2 hours at a time...and that was a good sleep if I got 2 hours...SLEEP NOW...not me.

Hubby asked if I wanted coffee...everthing was closed up tight at the hosital so he would go and find some coffee shop that was open and bring it back. I said yes...and he left.

Now alone...and feeling totally usless...I just sat. Thoughts of me as the nurse comforting others...helping them to get through their ordeal...holding sick children rocking them telling them it will be O.K. hugging MOM's letting them know that they are NOT alone...but here I am...my child..I can not do anything right now for him...Comforting...no way...my life was in a whorlwind and I could not find a way out!

The nurse came back in to tell me they were starting Justin's surgery now...so if I wanted to go for coffee or a sleep that now was the time. She would not be back for at least 1 hour.

Sleep NO...coffee yes...and hubby was off doing that...and cigarette...that is what I needed.

Out I went to sit next to my Pillar...one that many parents sit next too when their world is falling apart.

Smoked 2 cigarettes when I saw hubby coming back with super large coffee's He saw me sitting and came to sit with me. Told him the nurse would not be back for about 1 hour to give us an update. we were good here till around midnight. Sat in silence smoking ciggy butt after ciggy butt. Then hubby said... "I'm sorry...The Dr's felt it was best for Justin...I just want things to be right!" Anger...but understanding at this time...yes...I know..but I know what I am doing...PLEASE let me do what I do well. Over and above a mother...I am a GOOD nurse...I know my stuff and I also know that sometimes...Dr's feel and make parents feel that they are the only ones that can make medical decissions...Let me do MY job!" Silence...then yes...agreed. Hugged...but one of those...O.K. enough hugs...I was still upset and angry and I could not just forget!

Went upstairs...nurse came by about 15 pass midnight and said all was well...one team was just finishing up and the next is just getting readly...Oh brother...how long is this going to be??? well be have the room till 5:30 a.m. Oh my GOD...tears...no words.

Hubby decided to get some sleep...I paced...and paced went out for more cigs and paced some more.Came in saw the nurse and sometimes some of the dr's from the team that just finished on Justin...all is well Justin is doing well...I heard about 5 times that night...deep breath...pace and smoke.

It was about 3:30 a.m. when I saw a man coming down the street...he was checking the asktrays for butts...I just watched him...and in turn he just watched me. Came close to where I was...and he started to go through the ashtrays...I reached into my pack of smokes and took out 2 cigarettes...here I said...he stopped looked at me...said I didn't ask for that...I said I know JUST TAKE THEM! I guess I must have had my crazy eyes because he took them...said nothing...kept walking looking over his shoulders...stopping at the corner to look again at me..then disappeared into the night.

Into the hospital I went...out I came..paced walked smoked...paced somemore. Finally at about 5:45 a.m. The ortho Dr. came out...Mrs.V Justin did extremely well. They are just starting to close...so you should beable to see Justin in about an hours time. He will be in recovery for about 4 hours. Thank you I said...then the tears again...over one hurdle how many more to go???

Checked on hubby he was sound asleep so I just left him till the Nurse came out to say that we could go and see Justin now. Both of us went in...looked at our poor son...I.V's bandages all over the place...sleeping...at least he is sleeping...Kissed his head...he looked at me said "Hi mom...I'm tired!" We both sat with Justin for next morning...making sure that he was O.K.

Then in came a round of Dr's. Sick kids is a teaching hospitals...so one thing for sure...there are many Dr's all over the place. This group had their instructor with them and they all came into Justin's room. Hello I'm so and so...this is whatever...Do you have any questions on what your son had done yesterday...No thank you I know...what about ...is he in pain...no that is being monitored and also under control...please...you must have questions..no I do not. Then Dear I must tell you how imporatnt it is to make your son cough...what??? You know..I've been up all night...and right now...I really do not want to talk right now...BUT DEAR...it is important to make your son cough...listen...thank-you...but not right now...BUT DEAR...GET THE H*** OUT OF HERE all of you GET OUT!...I think she understood that one...for they all left. Just as hubby was bringing in coffee...Poor guy...he looked at them said my wife is very upset and tired...sorry about that...Oh boy...don't appoligize for me...I meant it...she was deaf or something...so I told her very simply to get out!

Silence again...and the day went on.

3 days went on here...then the Primary Dr. came in...yes Justin indeed had cancer...Rhabdomyoscarcoma Stage IV waiting for mycrobiology for molecular type. Going to move to you the 8th floor which is the cancer floor...

What that all meant...I didn't have a clue...only heard YES... CANCER!

that is it for today...

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