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Walking onto the 8th floor was something that is hard to explain. We all hear of a child with cancer..and our hearts go out. Thinking to ourselves...terrrible... so young. But now living it...seeing it with my eyes. Looking around and seeing all the children...the rooms are full...parents walking about with their MASKS on ...so tightly tied around their faces...Fear and sadness in each and everyone eyes. Oh my GOD...Reality sets in... Justin has cancer. You get to the point that you have to blank out things that are going to make you cry...or make you feel like you have NO control. You walk about...smiling when you have to...knowing every inch of floor space on that floor. Eyes peered to the floor...looking up only when spoken too and slowly drifting...that is it...I was drifting. Having NO direction...No thoughts right now...No idea what was to come. Seeing children everywhere...no hair...some in wheelchairs...eyes darkened from all the treatment and the results of this fight they were battling...Children of all ages, all races, girls, boys, teenagers and young adults...all with Cancer...fighting one of the greatest battles of their lives. BREATH.... The next 2 more weeks were again somewhat of a blur...doing what we were suppose to...trying to get information..reading all night long...talking to nurses and Dr's but at this time staying very much so away from other parents. Not really wanting to hear their stories...not wanting to really KNOW! Just can not handle this right now. Spent most of my time in the room with Justin...Doing tons of range of motion on his feeble legs and arms...trying to gain any strength we can. Been seen by TONS of Dr.'s not even sure who they are half the time...and to tell the truth NOT even caring at this point. In and out all day all night. Up down...here there...more tests... try to nap...that happened with my head on the side of Justin's bed for minutes at a time. Just rest my head...still praying that this is a nightmare...and I will soon wake up. But knowing in my heart...SH** has hit the fan...and the fan is full speed! We had physio come up and start to work with Justin...I would do exercises each day...many times a day and then he would go down for 1/2 hour session. I of course am not leaving his side...infact...my night smokes were even less as the Dr's were coming in at all times. I did not want to miss a thing...and besides...this is MY child...I can NOT leave him. Our primary Dr and Primary Nurse came in sat down...and I knew...here we go again. Hubby and I were sitting there just looking...Dr. began...Justin has Rhabdo like I said...still do not have molecular studies back but expecting them any day. I want to sit with you and plan our attack. He explains the treatment...Chemo weeks and weeks of chemo...the news that he will lose his hair...he may be sick to his stomach...may not...problems that can arise from the treatment...Gosh I went blank again...can't keep all this in...shut my ears off...sat there looking a him...but not letting one thing go in. Just can not handle this. Then after a while...not sure how long...but I kept wishing he would just SHUT UP...but talking he continued. Hubby was asking a question then I came back. What are his chances...That is what I heard...10% at this time but depending on molecular that could drop to 1%. Well blank city again. I remember just saying...I have to go for a cigarette now...BYE...just got up and left! I had smoked about 2 when hubby came down to MY Pillar...believe me this Pillar was many Mom's special Pillar but right now...it was MINE and I swear if anyone came near I think I was ready to PUNCH...LOL... think of it now...but that Pillar was my strength. Besides it was a great back rest. LOL Hubby and I talked...wondering what will happen now. No decission to make really...I was staying with Justin and Hubby was going to have to go back with 5 other son's. Both agreed with no thoughts. then the question when??? Well Justin was going to start Chemo next week...so perhaps after the first bout. That too was agreed upon and we then sat in silence again...smoking our heads off wondering what ever happened. The following day...I was talking to Justin and was explaining as best I could about what he had...what was going to happen and what treatment and what it was suppose to do. Justin just looked at me and said..."Don't worry Mom...Justin is O.K!" ahhhh...tears are coming I have to go out of the room...Justin can not see his Mom falling apart here. Out I go... back I come. Then as quick as I got back...Justin in a very stern voice says...."MOM why do you go out of my room to cry? I know you are sad because Justin is SICK...But you can cry right here!" Well how-do-you-do...Here I am trying to hide my fear, pain, and tears from Justin and he is only all too well aware of what is going on. I looked at him started to ball my eyes out and he just held my head...rubbing my hair telling ME it was O.K. Wow...what a lesson...regardless of the age...they KNOW...you are NOT protecting...actually it makes them very sad and uneasy...Share...Share your fears...Anger...and Tears...for THEY KNOW! Well from that moment on...time to wake up...Yes this is Justin's body...he knows only too well what is going on inside of him...I can only assume...so from now on...Right here Right now. Well don't think that things happen bit by bit...OH NO...everything all at once...O.K. here come the Ortho Dr.'s All three in their white glowns...green paper shoes green hats and charts....tons and tons of charts! Good Morning...How are you Justin? feeling a little better...yep was the answer...I'm sitting right next to him...eyes red from my tears...looking like I just got in the biggest fight of my life and LOST!...but none the less I'm there. They looked at me...ask how physio is going?...Tell em fine...then they proceed to check Justin...Incisions...strength in legs and arms neck relfexes etc...All three were doing it so just thought perhaps some more teaching stuff...BUT NO...Mrs.V. is your hubby around...no he is at the hotel...Oh... well...we are here to inform you that we removed 3 very large tumours from Justin's spine. The bottom one actually fractured his spine and that is why Justin can not walk...put pressure on his legs. It seems however he is getting some of the strength back in his arms and neck area. We really do not know if he will get much more than he has already as it has been 2 weeks since surgery. Yes and??? And we believe that Justin will never walk again. Well hammer down right on the head...what??? Sorry Mrs. V. I guess the strength that Justin had just given came flooding in all at once...I looked at Justin again just going about his business as though these Dr's were talking about someone else...I looked back at them...as they asked do you have any questions??? No I said a comment....First thank so much for all you did...we are really thankful...But for Justin NOT walking...sorry...will NOT accept that...This family has enough to tend with right now...with this 10% or less survival rate so never to walk again...NO WAY! Dr's looked at me..said this is what we feel and know Mrs.V there is always a miracle! Yes there are ...and you know what...it starts today! Again thank you...The Dr's left wishing us all the luck in the world and telling me if I ever need to ask questions etc.etc.etc...you know how it is just call. Sat there again...wondering why all this was happening...not one thing but one thing after another after another...Just at this time Hubby came in and behind him our primary Dr. Thinking again...Our primary was coming in just to confirm what the ortho's had to say...But oh no...just add somemore to the pot...for it is not quite over flowing...Hi...how are you??? well...not too good thanks and you? Hubby asked who the Dr's were that were leaving...told him and repeated what they had said. Our primary said nothing..then sat down...I looked at him and said Oh no...everytime you come in this room you have more bad news...now what??? He just looked at me...and said the Molecular studies from Justin's biopsy had come back...Justin had the Ambryonic type not the Embryonic that they were hoping for...so what does than mean...Justin's chances of surviving the treatment is now 1% let alone surviving Cancer it is the treament now I have to be worried about. I just looked up...quickly looking over to Justin who looked up smiled and continued to look through his book. Looked at my hubby who now was just sitting there...looked at the Dr...and said...wow...from now on when you come here to tell me something...PLEASE let's go outside of the room...maybe then we will get some good news. He just looked at me...I had to smile...almost a survival smile...then said...O.K. Chemo starts in 3 days...I have to try and place this stuff somewhere in my head...so right now...I can really not think. I'll need to talk to you in 3 days! He agreed...told us just to call if we need him before...and left. Hubby looked at me...I said Don't Talk...I have to think...you know... I have to go...Justin I have to go for a walk...Mommy will be back...but I have to go for a walk..."O.K. Mommy you go think K!" and I left...by myself...just me and my thoughts...or the jambled mess of thoughts. |
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Today is a busy run around day but...felt I needed to write something just for me. The next few days were just days...the hospital routine stuff. Cancer was slowly dictating what we do, when and why. Just getting use it now. So that is our life right now. The one day before Chemo was going to start...Justin and I talked about his hair falling out. He really didn't comprehend what I was saying...so asked if there was a hair dresser who could come and shave his head. Yes there was and she came in about 10 in the morning. Justin was all excited as he was going to have a "Bruce Paris Cut" now no-one else knew what that was...but number 2 son's friend who played hockey with him shaved his head...so to Justin ...this is what he was having done. The lady came in...pleasent as all get out. Asked how short we wanted to go...I said shaved to the scalp...Justin said "Bruce Paris cut" Didn't have the energy to explain to her...but she shaved, and shaved and shaved. Justin had wavy blond hair Beautiful hair...with the biggest sky blue eyes you have ever seen. Many people commented on his eyes...Ice blue...that piece to your heart when you see him. There he was tied in his wheel chair...getting shaved. Just before however we took a picture, and when she was done we took the same pose but hair gone. I think it was at this time that things really started to hit me...I looked as his beautiful hair was falling to the ground...looked out the window...tried desperately not to sob...but cried...the tears would not stop. Hair is just hair and it will eventually grow back in...but I cried. Realizing that we were in for a long haul. No bandage is going to fix this. All done and then nurses came in to tell Justin how handsome he looked. each time someone came in he just said Yeah I know...I have a "Bruce Paris cut" Don't think I ever told anyone about what the cut name was really about. The next day was chemo day...first chemo day...and the beginning of our long treatment. In came the nurses...setting things up. Hubby came in early that day so we could all be together. Important to really watch for any reactions so we were not leaving Justin alone for one minute. Justin as usual just took everything in stride. By now I too was getting use to all the picking and pokes so again when they came in I would hold Justin... talk and we would get things done quickly and out of the way. Had to be...so might as well get it done fast! By the evening Hubby and I were just sitting and Justin playing in his bed...then I heard..."HI GUYS!" I looked up and all the boys were here...oh my gosh...what a wonderful feeling it was to have everyone here all together for Justin's first chemo. As if that would not happen...the boys were waiting for the right time to come and this was it. After all the hugs tears and I'm so glad you are here...I went for a smoke...again needing time for just me. Came back to "LOOK MOM Mr.J is here..he's my teacher...and Look Mom he gave me a puppy...I call him PuppyLOVE!" I was shocked...there was Justin's teacher all the way 5 hours away...and he was here to see Justin. Justin was so thrilled to have all these people here...and then he looked at me and said..."See I told you Mr.J loved me the best!" Laughter filled the air and Mr.J said You got there partner! Ah thank goodness for family and friends...How we need them at this time. How we feel so lonely not even realize it till they come. Normalacy just for a few minutes...is what helps us to go forward at times like this. Just having people around...not talking about illness but talking about HOME! Boys were here for the weekend and Mr.J was heading to some meeting so bid his farewell and told Justin to call him when he got back home and he would come over to visit at the House. Oh I forgot...Just before the boys left...infact driving out of the driveway when a car stopped and "N" jumped out of the car...where are you going? Toronto they all said...well I'm coming too. "N" was a native boy that lived with us while he was going to school He was from way up North and called as usual just to talk and the boys told him about Justin. Well he gathered money from family and friend flew to Timmins then hitch hiked to our place. Arriving just in time to jump in the car for Toronto. N is family so again when I talk about the boys...N is very much so apart of the boys! N showed up the day of Justin's adoption too, so of couse all the pictures and stuff has N as part of our family. He just knows when to be there and when he is needed. Ahh think I will close on a good note today...Family and friends...helping me through...Just being there! Hugs Butterflymom |
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Well third day of chemo and all is well. Time for the boys to head back home, and aftwer some dicussion Hubby was leaving with them. Even though Hubby's company was covering the cost of a Hotel...there were meals, smokes and whatever else. If Justin didn;t like the hospital food down we would go to pick up whatever we thought he might eat. So money certainly was not lying around. Tears and goodbyes...I sat next to Justin realizing that now we fight this battle alone. Family and Friends gone back to carry on with their lives...and Justina and I in a strange city...not knowing too many people and now fighting the battle of our lives....After Justin's nap...we started to really work with physio...now way was I going to let the Dr's be right about Justin never walking again. Placed sheets on the ground...sat there with Justin getting him to sit...pillows all around...so the tumbles would not hurt. Actually it became a game for us...one that Justin I must say enjoyed. The day and nights were very much the same...tests, chemo, physio downstairs, stories, just trying to make the time pass. One morning after washing up and cleaning room...a volunteer entered our room. Quietly she entered...picked up one of Justin's stuffed animals and said...HELLO? Are you Justin in a squeeky and friendly voice. Justin looked up and smiled...I looked up and just looked...now what? You get to the point that if anyone came into your room you actually cringed. I watched as she talked to Justin through his toy...and Justin smiled and laughed answering all her questions. Is this your Mommy? Yes...I beat she is special?...Yes and what is my name? I don't know...I'm Ernie...you know me...Yes...you are Ernie but who is talking? I'm volunteer Mary! Well...volunteer Mary was a savior...soon I felt very comfortable with her there and actually looked forward to the times she would come in. She asked me if I would like to go for a break downstairs to get some air...hesitating Justin saying...go Mom Me and Volunteer Mary are going to play. I went..first time for one smoke came back to the two of them playing and laughing. Next time a bit longer and eventually would go for 1/2 hour. It was so great to go and just sit...not think...not worry about who was who and just do nothing. Mary was our first Angel that came to help us through. Justin was going to Physio each day...one day the phrsio said why do you not take a break while Justin is here. You just watch...and the break would proabbly be very good for you. I thought about it...Justin claiming that I so not come to the GYM because it was his business...LOL He called Physio the 'GYM' see all his brothers would work out at a gym back home...so now he was excited that he had his own gym and trainers excuse me. LOL Well why not...the break would do me good as well...the air although not the good old country air from home was better outside then in the hospital. So agreed to do that as well. They would send up a porter to pick Justin up and will return him in about 1/2 hour. O.K. agreed. Waiting for the porter to come that afternoon...Justin saw this Lady coming down the hall...Look MOM "La Bella Lady" she here...I have to go to GYM. Well I wish you could have seen the ladies eyes...Here name was Isabella and Justin could not say that clearly so out came "La Bella Lady" needless to say...the lady was tickled pink...had the biggest smile...and I saw a few glissing tears in her eyes. Another friend..."La Bella Lady!" Out I went...to my Pillar to just be...I wasn;t there but 1 minute when at the corner of my eye I caught a glimps of my Cigarette man. He was walking checking out ashtrays again...but he too noticed me. He slowed down looked...said nothing...I got out 2 cigarettes waitied till he got close to me...handed them to him...this time he smiled...said thanks and went about his way. Next day same as the above...the whole day...except maybe an extra pick or poke...but we were falling into the hosital routine. as long as things were well...we knew exactly what was up. So out I would go during Physio...sit at the Pillar and eventually my friend...came and talked...gave him his two cigarettes each time...but that was a cheap payment for sanity. We talked about everything but hospital roe Dr's or Justin. We talked lye soap...how his mom would make and wash everything in lye soap. We talked planes and bombers...he said he flew in the 2nd world war. We jsut talked...about weather...how crazy some people are and just anything. Each day at 4 to 4:30 I had my chat with my Friend. Monday to Friday. I was getting some breaks now...so seemed to be handling things a bit better. Volunteer Mary was great...came in each morning even on weekends...and spent time with Justin...mind you it was NOT just Justin she spent time with. She was there for everyone...but when she was with you...YOU WERE SPECIAL! I'm getting through...meeting more parents, but watching as I still felt I had enough on my plate and just coule not get into others problems as well. May sound slefish...but hey...have to survive here. One evening ...Justin asleep another Mom came out to see me...at the usual Pillar. She too was on the floor and she introduced herself and we talked...actually checked on our boys and went for a walk at 2 in the morning to find a coffee shop that was open. This too became a routine...while she was there. Although sleep was not part of this picture yet...more like cat naps...I was getting away while Justin was sleeping or having treament or Volunteer Mary was there and Justin wanted time with just her. LOL Now we are hitting Dec. and I am wondering if we would ever get to go home. Justin was getting stronger with his sitting...in fact now he did not have to be tied into the wheel chair...his arms were much stronger...but the good olf legs were taking there sweet old time. We had to get braces fitted as he was begining to get contractures, so didn't need that as well to complicated things. Spoke regularly with the Dr's and was going for a full day of tests to see what the chemo was doing...expecting no change...but at least no change was better than more growths. That day came and went...and our Primary came in and wanted to talk. Again...could tell by his way of walking...there is more trouble. Mrs. V. we will be doing more tests later...no point re-doing, but what we see is really no change...in fact there may be more growth...but it is so minimal right now...that we want to wait. Justin appears to be doing better so we will continue just like it is. For the first time in a long time...I didn't fall apart. I asked...what does this all mean. Well..after many more words...I got out from the Dr. that things did not look good and that this Christmas will be a Miracle...Well Miracle I will have...and watch...time for a change. The Dr. looked...said welcome back Mrs.V. I will stop here for now...but may continue this one later today! Hugs Butterflymom |
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First time in a long time...I was dealing with just the moment. Had so much on my mind before that I had a mess in my head. Just plain too much, So could not figure anything out. Even though the news was terrible...I said to my self that it was time we really fought back. Did some very deep thinking that night and came to many conclusions. 1. Justin needed quality of life...how we are going to achieve this is work real hard with physio, try what ever to make it work...and this young boy needed to be up and running again. 2. There is something that happens in treatment...a very thin line between treatment and research...NOT going to the research part right now...now way...when the time comes...something will happen to let me know what to do. 3. If Justin is going to die...then it will be cancer...NOT the treatment. See Cancer treatment is a very harch and hard on the body...some where again...there is a thin line. I will NEVER give up hope...but this is Justin's body...and he will let me know how...I'm not sure...and for right now...that is not a concern...but he will let me know when enough is enough. 4. There is something called quality of death...what the heck that is...don;t know...but will find it when needed. Now to talked to the whole family about these thoughts and have everyone agree. That night did just that...and after everyone had their imput...all agreed. Making almost like a pack...that we are NOT swaying from these decissions not one inch. Told my family that the next day I was going to talk to your Primary Dr. and let him know what we have all decided. Did just that and then said...O.K. lets go...But know something...Justin will make most of his decissions I will just make sure that his wishes are carried out. Justin will say when to fight and he will also say when enough is enough. I also added that...now you are going to see a fight...like you never have before. We will celebrate this Christmas and more...watch. The Dr. smiled...agreed and left our room. We continued treatment and Justin worked so hard with Physio. My Angels on Earth were there helping each day. Volunteer Mary...putting smiles on Justin's face and hope in my heart...something that I lost. La Bella Lady... coming each afternoon at 10 to 4 to hear the cry's of Justin calling out for everyone to hear..."Here comes La Bella Lady!" My 4 to 4:30 conversations with I tell you my Guardian Angel and then of course my night walks well really early morning walks between 1 and 3 with another Mom to the coffee shop about 4 blocks away. Taking each thing that comes not one ounce more...just what was happening at the time. Besides it was enough! Talking to one Dr who was on the floor...was asking if we could go home for Christmas. Gosh been here over a month now...really need to go home. Dr. said he would be talking to our Primary and would be doing more blood test tomorrow morning then will see. Another bout of chemo coming up so maybe after that. Well the next day...Blood in prepartations for our next chemo...NO...have to hold off...Justin's blood levels were just on boarder line so No will have to wait. Oh brother...Tears just came, I guess feeling that our chances of going home for Christmas were getting to be a wish. That afternoon feeling pretty down...one of the Paly superviors came in and asked if Justin would like to go to a Hockey game tonight. WELL...Justin's eyes lite up???HOCKEY? Please yes...let go mom..maybe the boys are playing. Justin never missed the boys hockey games, and to him this was medicine in itself. No Justin Toronto Maple Leafs...you get to sit in Cujo's Box with some other children and watch the game. Oh my...Justin nearly fell out of the bed. WHAT??? The MaLeafs??? Oh my...His eyes were popping out of his head!" Just as the floor Dr. came in...oh not sure Justin your blood levels are too low...you really should not be among lots of people..."Oh come on...I just won't breath"...LOL that were his exact words...Everyone just laughed and with Justin's enthusiam how could the poor man say NO! So there were 2 from the floor going and S and his Dad would share a taxi ride with Justin and myself. The afternoon could not go fast enough...Finally the time came and we were to go down stairs for our taxi. Down stairs the volunteer was there with our tickets...and a voucher for the taxi.S's Dad took them all and we climber into the car. Wheelchair in trunk. Justin could not stop talking...he was so excited. When we arrived he had his mask, but that didn't even hit his mouth and nose...it was off as soon as we got into the taxi. I can't wear this..."I cannot breath poperly". Got to the Arena, Air Canada Cup...and it was huge...we were shown to the elevators to take us up to Cujo's Box. We were being treated like queen and Kings. It was just GREAT! Justin got to be right at the front with his wheel chair...and when the players came out well that was it. He yepped and screamed Hey Guys...put your helmets on...oh guys come on...put those helmets on. He was so excited...yelling and cheering. S and Justin had the time of their lives. S was older...but from that day on they were hockey buddies...in fact that is what Justin called him...'My Hockey Buddy' The night was great and in between periods the maskot came up...Justin and the Maskot were on the big screen T.V. and again he just waved and waved to everyone. When the Zamboni's came out well everyone in the whole areana heard..."MOM... 2 ...they have 2 ...Boonies" LOL I am laughing my head off here...I tell you true...everyone heard him...in fact again the big screen T.V. caught all his actions and the delight and excitment in his eyes. The second intermission had Cujo's wife come up to visit ( now Cujo was Toronto Maple Leafs Goalie and he rented this box for Sick kids to use and watch the game) Justin was talking to her, and said...who are you? She said Cujo's wife...don't think he really understood wife...but said.."Oh K...Cujo's lady...tell Cujo he let a soft goal in...tell him my B do's like this" and flings his arm around and up "and he catches the puck" Well again laughter filled the aired...Cujo's wife...said yes Justin that was a soft goal and I will give him your message! Out of the mouths of babe's! I better explain B is number 4 son and he is a goalie. The night was Great...I keep saying this...but I'm telling you NO Hospital could ever top this. Food all over the place...pizza, pop, hot dogs you name it...what ever we wanted Yes...we could have! Third period saw a tied game...lots of fights...which again Justin yelling "come on Guys...Pay Hockey!" Then with a minute to go before over time...the other side scored...Justin just dropped..."that's it...you guys better smarten up...get out there and 'pay' hockey. " Well they must've heard him because it was drop the puck bing bang boom...He scores...Chris King! Well this game is going into overtime...yeppppiiiii Only took about 3 minutes into the overtime game and you got it...as Justin would say..."WE WINNED!" Now time to go home. The place is packed and getting into the elevator is going to take time. Really have to watch as Justin's Mask is no where to be found. The elevator door opens...the elevator man say...make room please for the wheel chair...I said it was O.K. not wanting to go into it with so many people...and Justin shouts..."Hey mister Elevator Man...I can't breath all these people!" well the next thing we know...everyone was ordered off...you heard him...he cannot breath all you people so I'm sorry get the next elevator. I nearly fainted...but in we went, S, Dad and Justin and I. Hey...the end of a great night...why not get the elevator to ourselfs...Groan.... Back at the hospital Justin says...Mom have a smoke K...just want to wait one more minute before we go in. I agreed...beside Justin had not been outside for 1 1/2 months...S and his Dad went in...Justin yelled "Bye Hockey Buddy see you upstairs." I stood there having a cigarette realizing just how important this night was for both of us. Finished and went upstairs...Justin so excited...and telling everyone "We Winned"... HMMMM...In more ways than one! Hugs Butterflymom |
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The next few days were spent talking about the game. To everyone and anyone. Poor cleaning staff...I think they took their breaks and sat to listen to Justin explain everying there was about the game. Tears started to change to some smiles. Worried eyes...but the face espressions were changing on me. I looked around at all the strangers...putting out their hand to Justin and I...waiting and waiting to help. Our choice! Chemo came on the 3rd day after the game...believe me Justin was ready...I bet even the cancer was having a tough time surviving his excitement. Chemo was started and we had 5 full days. So we had to stay on the floor and depending which chemo...the good old mood change, the food cravings...and then... not being able to eat it...Justin was very fortunate he never got sick. Oh I am wrong...Once he did but that really had nothing to do with the chemo. He had a craving for spagetti and yougurt mixed together...ekkkk...everyone one he met...the cleaning staff, nurses Dr's and even visitors walking in the hall...he ask them to ask the desk for Spagettin and Yougurt. By the end of the day...you got it spagetti and yougurt all over the place. ekkkk just the thought gave me the 'willies' but when you know that there will be times that he will not eat at all...believe me you give them what they ask for. LOL... He never did ask for that combination again. I think it was about day 4 of this chemo when Justin wanted to go to the play room. By this time he was much more stronger and could sit with no problems...in fact he was pushing himself all over in the wheel chair. No more head ties were needed and Justin's arms were really strong. The legs however...getting more spastic resistance when we exercised, he could at least now stand on them but that was it. We were in the play room for only a few minutes...when we heard some drumming..."Do ya hear that MOM? Pow wow...I hear it..."yes Justin but it is not a pow wow a little native boy is very sick...his family and friends are with him, and are playing some music and the the hand drum. Justin loved Pow wow's and we went all the time. He would dance and sing all day and all night. We both sat there listening to the drum and I know we both were thinking about the pow wow's we would go to all the time. A elder Native women came into the play room, she was holding her hand drum. Justin looked up straight into her eyes...and the women said...would you like me to play for you? "yes Please..." was answered almost as fast as she had the words out. Do you want me to sing too? Yes yes... Justin sat in his wheel chair just staring at this women...right into her eyes...I would glance from him to her...she in turn was staring right back...a very loving and concerned stare she woud give back to Justin. Ahh she bagan to drum...the feelings and sensation were just fantastic...my soul was singing...hadn't done that for a long time now. Justin in no time was singing along with her and before we knew it the whole playroom was full of people. They all came to hear the drum and songs. Justin and this women sang for about 1/2 hour. Even her family members came in to see and stand with all who had gathered. That was another wonderful day. That evening Justin said that the lady was nice to sing for him...I said yes...then he said but now she is sad. I asked why because the little boy is gone now. I looked at him...said... I didn't think so and he said yes Mom go look. I went out to the hall just as the family was leaving the young boys room...yes...Justin was right he was now free...My heart sunk. Gosh...how did he know? We were in another hall not even near this child's room. When I came back to the room Justin just smiled at me and said..."I have to sleep now...Love you more" Now emotions are raw again...fears and thoughts again coming into my head...all this for what? Believe me...this thought was always so close..."All This For What?" Sitting quietly beside Justin he was fast asleep in no time. I quiety got up to go to my Pillar to think..no to NOT think...but that is not what always happens. Sitting I saw another lady came out...she was so worried and looking through her purse for smokes...I handed her one of mine and asked if she was O.K. NO...my daughter needs another heart transplant and right now it doesn't look too good. I have been sitting in her room all day and forgot to go and get smokes...do you know where I can go and buy some...Never mind here take mine...I have more upstairs. This was the beginning of a life time friendship. We talked for awhile I told her I was on the 8th floor and she told me her daughter Kim was on the 6th floor. We talked and talked. It was about 5 when we went in to the hospital that night. I guess we both needed each other. Next morning I saw her again...hi how is Kim...stable she replied and then added I'm going to go and get smokes today so I'll get you another pack. Told it was O.K. but she was insisting. We made plans to go for lunch once both of the kids were napping, that afternoon. A friendship through a medical crisis brought people together helping each other without even trying. This lady was from out East in the Maritimes and had to leave her family behind. She was staying at the Ronald McDonald House. She asked if I was there and I told her NO...staying in the room with Justin. How long she asked Hmmm 1 1/2 months now...Hoping to get home for Christmas...but do not know. Her and Kim would not be going home for Christmas that was for sure...and the social workers were trying to make arrangements for all the children to come to Toronto for the Christmas season. I sure hope that happens for you. This friendship continued...mind you I must add..I still would NOT make any arrangements around the 4 to 4:30 time. Weekends O.K. during the week NO WAY...that was my time with the Cigarette Man. As Chrsitmas day was approaching and all the decorations and singing..hoho's and presentations for the kids came closer and closer...the Longing to get home was there for us both. Justin asked..am I going home soon? Don't know...well ask...I have to see Cool Dude...he misses me. Cool Dude was Justin's pony...he was now riding on his own and Justin and his Pony were inseparable. The pony was excellent with Justin... terrible to me...he would never let me catch him but Justin would yell.."Hey..Cool Dude time to ride!" Walk right up to him throw a lead line over his back...not attached or anything and walk back with Cool Dude walking right behind. By the time he reached the gate the lead line was dragging on the ground with Cool Dude watching not to step on it. Justin had the pony out all the time...didn't matter where or what he was doing the pony just followed. Justin had decided that next summer he wanted to enter a horse show with his pony...he had attended many a horse show that his older brother entered, and he had decided it was his turn. One night we were talking about home and he asked..."MOM now I can't do my show!" what show...my horse show...my legs don't work and how am I going to go to the show now? Tears in my eyes I said...Justin if Mommy has to hold you on the pony "YOU WILL GO TO YOUR HORSE SHOW...this I promise." I never promised things to my kids...just in case...I would say I will do my best...but never the word Promise...BUT...THIS ONE IS FOR SURE! It was the 19th of Dec. hubby was coming down to T.O. on business so he was coming in to see us on the 20th. Another son's birthday...Yep cancer taking over again...missed hubby's birthday, number 4 son's birthday and now number 3 son's birthday.AND maybe Christmas...oh boy feel the emotions here...just have to be home for Christmas. Now I was asking everyone...Nurses every Dr. that came in... Later that night one Dr. came in and said..sorry but they felt that it would be best for us to stay. Tears flowing...Justin who never really cry's said.."don't listen to him mom...lets just go..." now he was so upset...the Dr. asked to speak to me out of the room. Out I go and he adds that Justin is really a sick boy...and that this could be his last Christmas...so they are trying everything to make sure he makes it there. I looked up at him...tears have gone dry...I looked back into the room and saw Justin sobbing...Justin you want to go home? I blurted without even thinking...Yes MOM...I need to go home. Then turned to the Dr. and said..."not asking... telling you...tomorrow we leave in the evening to go back home." We will spend Christmas at home and if you want us back on the 26th I will be here...But I'm telling you we are leaving tomorrow night..so get the stuff ready. Justin's tears stopped and all you could hear was "Whao...Whaooo I'm going home!" Dr. just looked at me as I went back into the room. Started to pack our stuff...and looked back at him and said "NOT ASKING!" Hubby called next day and said he would be over after supper for a short visit. Told him we were going home with him. Really...he was happy but then said...did the Dr's say yes...Said NO...Told them we were, that is it...so pick us up will be waiting. Or... we will take the bus home! Primary Dr. came in early that morning...I knew that he was going to try and talk us out of it...but I said...get the blood work done...telling you I leave tonight with my son. he looked at me...I added If this is going to be our last Christmas...It Will Be With FAMILY! That is it...that is all. Primary raised his eye brows smiled and said...O.K. I'll get the blood work done now. Justin pops up and says.."good cause if I need a 'pop-up' then you have time to give me it. LOL we both laughed...funny how kids even the very young ones know all the medical stuff. To Justin a Pop-up was a blood transfusion. So he was adding his too cents worth...that he has time to get some if needed. And of course yes...he needed it...so started that early enough that when Dad came in he was just finishing had to wait about an hour more then we could leave. Can you believe it...we are going home for the first time in a long time!!!! Hugs Butterflymom |
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A few days before I made the decision that we were going home for Christmas. Volunteer Mary had come into the room. I could tell there was somthing up..but for the longest time she didn't say much of anything. Kept Justin company, with toys and Smoochy Man. Now Smoochy Man was a beaded man that was made for Volunteer Mary by another girl that also had cancer. Volunteer Mary would always come in with Smoochy Man in hand and give Justin kisses. Justin would always talk to Smoochy Man. Volunteer Mary came back later in the day...and told us she was leaving to go back home. She lived in the States and was in Toronto for her husband's job. I just sunk...the first person I had ever trusted my son with...and she was leaving. Tears were filling my eyes...Justin asked when and she said soon. But that she would come to see him again before she left. Volunteer Mary was one Special lady...she sent time with so many children...making them feel very important. She replaced a mom for one child. His mom was sick as well so she became his adopted mom during his time in the hospital. Staying all day with him...making sure he was O.K. just spending time. Now our first Angel was going to leave. Just when we were beginning to feel comfortable. Justin had asked that he make something for Volunteer Mary for her to remember him by...we did and the next time she came in Justin was anxious to give her his present. She in turn handed Smoochy Man to Justin. This was to keep Volunteer Mary close all the time. Justin was so happy...but added that this is Volunteer Mary's Justin will take good care of him and when the time is right...Smoochy Man will go back to Volunteer Mary. Everyone agreed and from that day on...Justin did not go anywhere with out Smoochy Man. The day came for Volunteer Mary to leave...tears...you better believe it...but promises of keeping in touch. I think this is why we both needed to go home. The first lady we ever really felt safe and comfortable with was leaving us...and not knowing if we would ever see her again. Volunteer Mary has a very Special place in many children and their Mom's heart. I know Volunteer Mary was our Angel! love you Volunteer Mary...Give Smoochy Man a Kiss! Hugs Butterflymom |
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WE ARE GOING HOME! You know what the hospital building could have toppled over...I really would not have noticed...because we were going home. The Primary Dr. came in and gave a list of don'ts... top of the list was people and animals...had to say away form them. There really wasn't much of what we could do. I smiled...he looked and I said hey...we are going home...the first thing when we arrive is into the barn...and Justin is going to hug and roll over his pony. Yes...these may be germs for many...but for us...this is life...so believe me I tell you true...that is what we are going to do. Also got a list of groups that will be contacting us...Physio, VON, Home Care...ahhh I do not think so...we are busy and I can take care of my son. Not saying anything right now...when I get home though...the phone will not get answered. This is our turn...Justin's turn with family and FUN! We have 8 days before we have to be back...and we are going to make the best of our days! The drive home was so long...not any longer than before coming or leaving Toronto, but just long...anticiapting what will be. Justin snuggled right in and before we even got 3 blocks away was sound asleep. You know he was smart...just sleep then...bingo...home! I think I counted every building, every tree when we got closer and I remember like it was today...never mind yesterday...it was today. We turned onto our street...and the radio began playing..."Feels Like Home To Me!" The tears just came pouring out of my eyes...we are coming back home! When we arrived the boys were all waiting. Wasn't too sure what the house would look like...considering there were 8 men living there and no one to clean. Who cares...Got to the driveway and everyone was outside waiting. Family and Friends....Friends were there just to say hi...then left soon after our arrival. Like I had said...too the barn I carried Justin...his eyes wide and waiting to see his buddy. In through the barn doors right to the stall...Cool Dude was eating near the back of the stall and when he saw Justin...well there are NOT words with what happened. Justin crying...and yes tears and the works..."Cool Dude...I'm back." Cool Dude looked up booted the wall and ran...he ran right into the front gate...he neighed he cooed he swung his head all around. The 2 buddies were together again. Opened the door still holding Justin in my arms...and the pony just pushed with all his might and cuddled in close to Justin. Justin stroked his head rubbed his eyes and kissed and kissed and kissed. Finally I put Justin on the Pony's back and looked as the 2 Friends were together again. Trying to get Justin out of the barn was touble enough...he had come to the conclusion that he should stay there with Cool Dude. After some persuasion for both..Cool Dude had decide he was not going back in the stall either now, Finally we got everone where they were suppose to be and got Justin to inside. It is about 3 in the morning now and we were tired, but...too much excitment to notice. Once in the House the boys carrying our stuff ,Justin and I went to the living room. Justin was on my knee when he said "K boys...I need my Hug, just stay there cause I'm coming for it" He instructed me to put him down on the carpet and pulled hmself up with his arms. Dragging his legs behind...and telling everyone "Don't Touch ME!" he pulled himeself to each person for hugs. Not a dry eye in the house. On top of the 5 boys and hubby we had 2 other people living with us. One we were helping out through his bad times and another Native student that was living with us and going to school. His 2 brothers lived with us as well before and now he was going to graduated with the boys as well. So Justin went to each person...all of us pushing our arms out getting ready to catch him if he fell, With Justin Loudly reminding us..."Don't HELP!" but NOT once...his arms were shaking from taking all the weight...but Justin was doing what he wanted to do. After something to drink, and realizing just how late or early it was we all headed to our rooms. Justin said...Mom I need to sleep with you K...No problem... Got Justin settled in bed... Hubby and I decided to have one more coffee before we hit the sack. Just sat and drank the coffee in silence...taking in all I could...WE WERE HOME! The next morning came fast...considering it was already the next morning...LOL but wasn't even tired. Had a few things that had to be done for Justin and his treatment so got those things out of our way. Asked if hubby got anything for Christmas...No??? Was I suppose to? LOL nah...it is just 4 days away...we do not need a thing...LOL I laughed...just so glad to be home...I really didn't care...because our Christmas was already...we were home! Talked to a neighbour that asked if he could come over on Christmas Eve as Santa to give Justin a present. He had not done this for a few years now...and felt that this is something he would like to do for us. This same Neighbour had been coming to make sure our driveway was cleaned of the snow each day with his truck and loader. Another neighbour called and brought over food and Christmas cookies...and her famous soup. My Friend and her hubby came over food in hand as well. The house looked really good when we got home, and this is when I found out that she had got a few of the boys friends over and they all cleaned up. The boys came in with a tree that day...and once it thawed out we would be putting it up. The the phone rang...this is VON...oh I have to get back to you...just popping out...Hello this is Physio we need to do an assessment of Justin O.K. what about after the New year...sure that sounds good...LOL we were going back on the 28th. Hey...like I said I can take care of my son...thank goodness for my medical background...Specialized in Peds...so this is where I am very comfortable. Mind you everyone else either never listened to me...or decided that I could not emotionally take care of Justin. Well They all LOSE!...because I was...and outsiders right now were not coming in. Did however have to take Justin the next day to the cancer clinic for blood work, so wanted to get that done early so we (Hubby and I) could get some Christmas stuff done. My Friend called and asked if we were going to go there for Christmas Supper...I said NO you are all coming here like normal. We always had the Christmas Supper and everyone and anyone was invited. Are you sure??? Yes I am but this year you can help make some of the food. You do Desserts and I'll do Meal. Agreed. Called back for Justin's blood results and all was well. They asked if the other orgaizations had called said yes everything is under control... nothing more. LOL hey...got to do what you gotta do! Justin had refused his leg braces ever since we got home... saying that his pants didn't fit good with them on, so we were doing tons of physio. Even the boys were helping out. Justin just enjoyed all the attention...but then this is what he was always used to...Justin would even get the boys friends to help out...especially their girlfriends...Justin would say...want to help me walk? Well what could they say??? So then he would say K..which ever brother "Go Now... we is busy!" LOL Some how Justin convinced each one that rubbing his back was really good for his legs...so Justin was just enjoying and taking advantage of all! Christmas Eve came and knock knock knock Oldest son carried Justin to the front door. We knew who it was...But Justin didn't know. You see here at our house..no-one knocks...you just knock if you want too but better come right in...because you will stay there forever. So this was strange and Justin knew it. When they opened the door...Justin's Eyes nearly fell out...he was startled at first...never said a word...just stared and stared...Santa came in had scratch tickets for everyone and then gave Justin a present. He said that he heard that Justin was in the hosiptal and thought maybe he would like to be a Dr. one day...Not sure if Justin even heard him...he was still just staring...then opened his present to the biggest Dr's kit there is. He was so happy...Gave Santa a HUGE hug...and kept staring. Santa had a natural beard...and to make it more realistic Santa's wife had dyed it white...so to Justin this was the real one. Santa said he could not stay but wanted to come and tell Justin how proud he was of him. He asked is there was anything special I can do for you? Justin without hesitation said..."Yes...I have lots of friends at the Hospital that cannot go home...you won't forget to go to Toronto eh?" Tears...all of us...tears...Justin wanted to make sure santa would not forget his friends. He even went as far as naming names. Santa had a twingle in his eye for sure now...and tried like mad...to keep it right there! Christmas morning was wonderful...all gathered recieiving and giving...loving the family togetherness. Just being! Supper was great...and Justin had got a hockey game for Christmas so needless to say...he was busy playing everyone a game of hockey. Mind you he was a poor looser so better believe if you scored you cheated some way and Justin would yell... "MOM he is cheating!" Ahhh...a great Christmas. The 26th had friends over again for supper...we had so much food that we were good for a few days. So why not share. The house was filled with people...and the boys friends were all coming over. Even Bruce Paris...remember the Hair cut...well we laughed again...because Justin now says..."Don't go to my hair cutter...because she cuts your hair so short it falls out!" I keep telling him that it is the treatment...he answeres "I know MOM" but repeates the same thing..."She cuts it too short then it falls out!" Poor lady...she was so kind to come to the hospital to do it...never accepted a penny and now Justin would be terrible for her business. LOL 27th brought thoughts of going back,,,neither one of us wanted to do that. BUT...we had too. Made arrangements to fly this time...as it was to long a drive to go there and back. Called the Roanld McDoandl House...and yes we sould have a room so we would get there on the 28th...go to clinic and wait for a bed! Tears were now very close for both of us...having to leave again...not sure how long...but needed more testing and chemo so would be there till the New Year. Justin and I would spend New years in Toronto. The Millenium New Year! Oh well not worrying about it right now...yeah sure...that's why I'm telling you all...but working on just taking in all the good right now. 27th at night had lots of the boys friends over...Justin again in his glory getting back rubs like no tomorrow. Me packing again...this time with my mind working so I will have more than one pair of socks and a few underwear this time. And Justin will not have as much as he is in hospital sweats when he is there. Later that evening Justin and #4 son were playing hockey in the living room...everyone else down stairs...I was in the dining room having a coffee. All of a sudden #4 son started to scream.Oh my heart sunk..something happened... this has been all too good to be true...now what? I jumped up and ran...the boys from down staris came running up and there we all were standing white as ghosts...watching Justin walk! He just stood and started to walk. #4 son had tears falling form his eyes...everyone just stood there...Justin walking a bit crooked leaning forward and having to run to keep up to his body...but none the less walking. Again... not a dry eye except for Justin he was too busy running from person to person Telling them all "Don't Touch me!" until he through his body into their arms. A HUGE Roar and cheers came out...this was the Millenium year coming up...and nothing would out do our night on the 27th...and the Millenium New Years even could not beat the cheers of our night! Hugs Butterflymom |
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The 28th came much too early for Justin and I. Our goodbyes to the our family was worse than the first trip. At least then I was in a cloud of smoke, and Justin was really sick, so our thoughts were not on family and missing them, it was on getting help for Justin, nothing else! Off to the airport we went...said again our goodbyes..and I'm sure there were people there crying because of Justin and I. We get to board early due to the wheelchair, so I must say...was glad because my throat was closing and my heart was broken so I needed time to put myself back together. Arriving in Toronto...you seem to slip back into that 'hospital personality'. The Mask is put back on , making sure it is on real tight. Arrived at the Ronald McDonald House...Got our key...went to our room. Just sat for a few minutes...then went down stairs. Most people were at the Hospital so very few families down in the kitchen. Got Justin ready to go to the Hospital and off we went to clinic. Waited for about 3 hours then finally got into a room. Had Blood work done first and now we wait here for another hour. Primary Dr. came in and nearly fainted. He comes in to see Justin walking around the room. He just stood there...I looked and smiled...waiting to hear what he had to say. Justin come with me I want to bring you to 8A I want the nurses and Dr's there to see you..."O.K. Let's go". Justin eager to go and see some of his friends went running down the hall. People everwhere who had seen Justin before we left...just stood in ah... They could not believe what 8 days had done for this child. When we go to 8A all I heard was...Justin yelling..."I'm Back" and the cheers and clapping as he entered the floor. Tears were in everyone's eyes, and then they looked to me. Hey...what can I say...Family was what was important at this time...and see what it did? Our Primary Dr. was looking for other Dr's to see Justin and even the one that told us NO we could not go home came out to see Justin smiling ,walking, and running. Still leaning forward...but let me tell you...who cares! Justin all of a sudden cries out..."Hey La Bella Lady...look at me...I'm back!" Poor Bella Lady...the tears just poured out of her eyes as she ran to Justin and gave him a BIG hug...oh Justin you are walking. The cleaning staff came out...all giving Justin a Hug...Justin lapping each moment. It was time now to go back for our check-up...Don't thni they are going to find too much wrong here. Primary Dr. had made a call to the Otho Dr's to get them to come up to see Justin. They were on their way. Even our Primary was getting into the excitment that Justin was walking...as we were heading back to the other side of the floor to clinic...the Ortho guys got off the elevator...They stopped dead in their tracks...WOW...Justin...they looked at me...and said...2 miracles...walking and you are here. Yes I said...and we are just beginning. The Dr's followed us to our clinic room..again we were meeting people that had seen Justin tied into the wheel chair...I saw Mom's with smiling tears...some came over and said...you guys give us HOPE! So important to find that little bit of HOPE...this keeps you going, doesnlt matter if it is your child ro someone's else...HOPE is HOPE! Once in the room now the Otho Dr's want to check out Justin...go for it...things will only get better I told them. Hard work...that is what it took and the Love of his Family! You guys did the necessary stuff...but...the rest was up to Justin and his family! I must say...there were lots of smiles on the floor that day...something that you really do not see much. Genuine smiles...ear to ear with tears...Smiles of HOPE for the future. but at the same time happy right in the moment. Finally it was time for Primary Dr. and us to talk...They want to do more test...so he will make some appointments after that then we would do chemo. We agreed...Primary asked how the appointments went back home...and that Physio must've done some amazing work...I laughed oh that appointment is on the 4th haven't seen them yet...VON...well I forgot to call them back...you know how it is...Christmas and all...Yes we did go 2 times for blood work and that was O.K. he just looked and smiled...I see... he said...and I trust it will continue like that... Yep...Like I said we are quite capable of taking care of Justin...I think now the rest of you will see that! He just smiled..then added you won't be back home on the 4th...I know I laughed...so I guess that is one group we can mark off the list! He just looked and shook his head...told you I know what he need when he needs it...and no-one is going to interfer with that. Also added that I wanted to talk to him after tests are done...My mind is working now and I have TONS of questions. So we made an appointment for when we are on the floor and getting Chemo that he will come in with our Primary Nurse as well and we would talk then. Headed back to the Ronald McDonald House..stop for some grocereis along the way, and got to see some of the people that we had met at the hospital prviously. One being Kim's Mom. Kim was doing much better and Justin added he wanted to meet her. So tomorrow between tests we were going to go to the 6th floor and see her. Both of us had never met Kim so this was going to be our first time. The Ronald McDonald House was amazing...kitchen to cook in...our own rooms with bathrooms, play room, games room and Alex the WoodMan. Every Wednesday Alex the WoodMan would come to the house and work with the kids doing wood crafts. He would cut out patterns and bring them in...kids and their parents would sit and paint, glue and whatever. He had been doing this for a long time...and everyone knew Alex the WoodMan. We all LOVE Alex the WoodMan because he gave us time NOT to THINK! Justin was starting to know the days of the week and Monday was clinic...Tuesday was free at this time Wednesday was Alex the WoodMan Thursday was Tails.. Now Tails is a group of staff and volunteers from the hospital that perform a story called tails. It was written by a Dr. at the hospital and many of the staff and volunteers play the roles of all the characters. Justin loved Tails...and each Thursday we would go to watch the play. He knew exactly what was going on...probably could play each part, but each Thursday...off to Tails we would go. I remember once Chemo was to start on a Thursday...well Justin raised such a stink that Chemo started after Tails...No way was he going to miss his show! Sick or not...Thursday was Tails and that was it! Lets' see Fridays were a 'fill in' day...just before the LONG and I mean LONG weekends at the hospital. Try to get this and that done because other than emergency stuff nothing is done on the weekend. Treatments continue...but tests etc...just do not happen. And you cringe when you are there for an actually long weekend because things now seem to stop for 3 days with Friday still being the fill in day...but when it is a long weekend Friday... that means very little on that day as well. So in all it means 4 days of nothing...just waiting and waiting...something us parents with sick kids just seem to do all the time. Once all the tests were done we had to go back to clinic to see if we could get a bed for his chemo. So each day we would go to see Kim...Kimmy through Justin's words. The ttwo would play for hours and Kim's Mom and I would go for a coffee and smoke breaks. Kimmy was still waiting for a heart...but at least she was off the critical list for now. Monday came and Justin had his blood work done. Saw the Dr. that afternoon and he had a bed for us to go to the Hospital for Justin's chemo. So over we went. You see when you go to clinic you arrive before 8:30 to stand in line to register. Then go in another line for blood work then wait...wait and wait. By the afternoon you should get to see your Dr. at which time they will tell you if there is a bed so that we can get chemo. If the answer to the bed is NO then the next day you do the same thing. until a bed is available. Justin and I had spent New's Years at the House...he fell asleep before the new Year rang in, but did get to see the fireworks through the window. I spent that New Years...looking through the window...wondering what lies ahead. Because of the Christmas season all the appointments and tests days etc...were all different so we just had to wait. Finally got a bed and started the chemo. This time seemed different. One ... Justin was up and walking so it seemed to be a bit better. Mind you he made sure he still had his gym every day, and like before this is the time I would go out to see my Cigarette Man...and yes he was there! Getting to know more and more families...taking in just enough but not letting their troubles over-whelm me. My Friend came in as well, and C and I were talking and again going for our nightly coffees. It was different somehow...maybe because I seem to have some control back...maybe that was it! Now knew what the routines were...knew that Waiting was part of the routine...and also realizing that today had enough on our plate so would only deal with that. Tomorrow unfortunately would bring more...but for right now...Today is what I had to deal with! Had to go back to the Ronald McDonald House after chemo this time because the Dr. had now order a MRI and that was scheduled after Chemo. I got to meet more people...volunteers and staff. These people were just great. Always there for you..asking how was your day...do you have food? There is a "house cuboard" incase you run out. Is there anything you need. We have workers available to talk to you. Families were great...all fighting for the health of their child. All with a common bond, all willing to help and be helped! A TRUE Family...and Extended Family willing and able to help if we wanted them too. The House Manager knew just what everone needed...he has that special trait...P the maintenance guy...was always there fixing stollers, wheelchairs, you name it he fixed it for us. Volunteers to read to your child, do crafts, Cher who took Justin on magic Carpet rides...became a regular routine for us on Friday nights and sat afternoons. Justin and her spending time together talking about everything and sometimes not much od anything. There were the weekend Managers who kept the house running and making sure all the necessities were available for all the families. All these people who gave of themselves...not for gain...but gave because they CARED! Here at the HOUSE you feel safe...protected, cared for..I remember coming in on a Tuesday and smelling cookies...wow what a great smell to see them lined up on the counter for everyone to have. Volunteers ladies came in every Tuesday and made cookies for everyone in the house. Just brings you back to when you were young. Just a second of yester years...and happy times...just enough to help you through regadless of what kind of day you had. All these people helping...caring...loving each of us...just because! Ah..finally time for the MRI... which means pack up, clean your room for the next family to use, and leave for the airport to go home right after the test. Was a great day again because we could go back home. Didn't really get to talk to Dr. about everything I wanted too, not because he didn't show up, but because I forgot half of what I wanted to talk about until after he left! Isn't that always the way? So saw him in the halls and told him I would fax him my questions for next visit...that way he knew what I wanted to talk about...get the answers I needed and that way each of us get to talk about what we need too. He agreed so that is the way would would do our things. Went to MRI...now most of the children are sedated for MRI but not Justin...I sit with him keep him still and they do what they have too. It takes about 1 1/2 hours but we get through. Justin calls it the "Boomboom Test" because you hear boomboomboomboom for the whole time. Done...headed upstairs to see Kimmy and Mom and now were heading back to the airport. Home for 2 weeks then back again for one week. Hugs Butterflymom |
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For us 3 BIG Miracles Happened. And on the plane I just sat peacefully thanking GOD for where we were. For Justin he had his Christmas and at home. He also started to walk again and each day getting stronger. Not knowing what tomorrow brings...Today is good enough! Got home to find house upside down, everyone back to their regular activities and family and friends going on with their lives. Although I'm glad that everyone is doing well..deep inside I had a yearning to be doing the same thing. I cleaned the house, got Justin to his lab appointments, did his treatments daily worked on physio and took daily walks with Justin to strengthen his legs. We started skating again, and the boys had made a rink in our side yard. So Justin spent many hours out there playing hockey. Justin also did alot of riding...we had someone come and clear the snow out of the riding ring, saddled up Cool Dude, but most of the time Justin went bare back and I sat for hours watching him play with his horse. The two weeks seemed to fly by and it was time to head back. The usual call to the Ronald McDonald House found that the house was full, so when we arrived we would have to call to see if there was a room. Had faxed all my questions for Primary Dr. So Clinic will have more questions answered. The day came all to fast to go back but ready we were. Got to the airport and back to the hospital we went. When we arrived I called the HOUSE to see if there was room NO. Oh well I'll stay in Justin rooms. Got to clinic, talked to Dr. and found out that there were NO beds on the floor. What are we suppose to do? Every thing is full. Well call a nearby hotel. Well did, walked the 4 blocks with suitcases and wheelchair through the snow. Got a room and left our stuff there then headed back to the hospital. When there is NO rooms in the morning, you have to stick around till about 5 to see if a room comes up...NONE so we went to eat then head back to the hotel. We were both very tired so gave Justin his bath and we both went to bed. Next morning we booked out, as we do not know till about noon if we have a bed and the hotel will charge for another night after 11. Doesn't matter that you are at the hosiptal...no excuse...they want their money. So back to the hospital with everything in tow. Waited until 3 no beds...called the House a few times to see if anyone left NO LUCK. At 6 headed back to hotel hoping that they still had a room. Yes...and again hit the sack early. Next morning same thing. Lug everything back to the hospital to be told sorry doesn't look good. Well I was really upset now. Why did you tell us to come then? Well it is Justin's time. Yeah, but NO bed...so we wait! Sorry this is just how it goes. I called the House again...still no rooms, knew that we really could not afford another night in the hotel. We got a hospital rate of $88.00 plus 15% tax each night. Then the food...can't do this. With really nothing left to do..I had to head back to the hotel. It was now 8 at night and I was really upset. Got a room, got Justin tucked in and I cried. I literally cried. Gosh we have enough on our plate and now this. The next morning came very slow...I didn't sleep much just worrying about everything and so was not in great spirits in the morning. We headed to the Hospital to arrive for 8:30 waited in line then waitied for blood again...and just sat there actually boiling I think. I went to 8A asked them if it looked like we could get a room today...they were not sure, but maybe later on in the evening. When we got our blood results back, I went back to the floor again asked, but added if there is NO room then we are going back home. I can not afford to stay in the hotel. The Head Nurse looked at me and said. Mrs.V. you can not leave, do you know how important Justin's chemo is? I replied Yes I do...but I think someone here has forgotten his protocol. So Like I said NO room today...we Leave. I took Justin down stairs to get him something to eat. Thank goodness I had the wheel chair, because this became his nap place. Gosh this was frustrating. Pulling suitcase and a wheelchair all over the place. Carrying winter clothes and waiting...just waiting. Well we did get a room that night but it was at 10:30 p.m. Both of us were just exhausted and now Chemo will not be till tomorrow morning. Add a week to that now we just have 1 week back home. Gosh...what a mess. The next day our Primary Dr. and Nurse came in I told them both that next time I will not come if we do not have a room at the Ronald McDonald House or in the hospital. Just will not come with out that reasurrance. Primary Nurse said that their hands were tied...I said mine too, I can not afford this. So that is it...NO ROOM..Not coming till there is one! Talked about the questions I had...but now I'm really not in the mood to put my energies there. Told them we would have to do this another day. We chatted about adding GCFS to Justin's regular routine. This is to build up his blood after chemo. It is by injections each day, but a pick line will be out in. Use it for 7 days then the pick line is changed arms and we start again. This will be done at home. One thing that I decided that even though I am very capable of doing Justin's injections, I wanted to be his MOM...not his picker. So VON was going to becoming by to change his pick line when we got back home. I agreed to that becuase also the meds were like $5,000.00 a month and it was not covered my our medical insurance and if we had a nurse coming into our home then it is covered by our health coverage. I knew we could certainly not afford that kind of money so agreed to have the nurse coming in, one time a week to change the pick line. Did our Chemo routine and saw my friends and then headed back Home! Again the house a mess, everyone busy with their things, and Justin and I doing the medical stuff. Hubby was on a new project now which sees him out of town. You guesed it the week we got to come home...Hubby gone. When we were to head back..hubby coming home later that day. O.K. just breath! It came time for Pick line to be changed and I recieved a call that they had to reschedule. But the pick line has to be changed, can't use it again tonight! Sorry we are short of nurses so changed you till tomorrow. Just add to the all the other stuff. Feeling very much so alone now, I did what I had to do. What I really did not want to do, but changed the pick line. Justin was happy I did it...said it doesn't hurt when I do it. But I knew then...that this will be another treatment for me to continue. Justin was not going to let anyone else do it now. Next day the VON came in, here to change the line. Sorry did it yesterday when it was due to be changed. O.K. then I'll check how you give the needled. NO..it doesn't get done till 8 at night. Well it would be O.K. for today so I can see that you are doing it right. Well I have done it for a week and changed the pick line so I think I know what I am doing. "Oh my, oh my someone got out of the wrong side of the bed today!" That was it...I never wanted to be his pick lady, you guys never came when you were suppose to, now you want to see what I can do, also want to change his meds times to be more convenient to you. On the worng side of bed??? no just have to deal with people who really do not know! She just looked at me...O.K. I'm going to take his blood pressure . Out comes an Adult cuff...that is not going to get a proper reading...oh well that is all I have. He is 4 years old...you would have to wrap that thing twice around and then some. Oh it will be good enough. I laughed go for it...well of course some rediculous reading and then finally she decided she had to go. What a waste this was. This trip home was very frustrating and very loney. the boys tried to help out, but they were busy with their things. Friends and other family members were also busy after the Christmas season and now all back to regular routine. I started to feel sorry for myself. Justin and I went about our business. But I could feel a distance... that I was putting out now. Almost like a wall, protecting me and Justin from everyone else. I recieved a call telling me that our Primary Dr has scheduled more test and If we could please be there tomorrow.NO I can not...I live 5 hours away and you have our schedule so book while we are there. So when I get there on Monday we will talk then. They think we live across the street. Sunday night on the plane, called the House and yes this time there was a room. So arrived and went right to bed. It was a tough time...sat with friends in the evening on the outside balcony where you can smoke and just listened to their stories. Justin and I headed upstairs early enough for tomorrow is another day at the hospital. Got there early this time we also had to go for an Echo a heart test because of the chemo he was on this time. So after blood we headed there. Waited till 11:30 and still no echo. I went to the lady and asked when our appointment was? They looked and said soon. It was at 4:30 by the time we got in for the tests and now by the time we get admitted will not have cheno till tomorrow. Headed back to the floor and they said come back tomorrow. Thank goodness we were in the House this time, because again no bed today! Headed back, but not till I promised Justin we would come back to go to Tails. Which we did. Next morning got the hospital regular early time and yes there was a bed. Went straight to our room and got ready. Once Chemo started I said to Justin Mommy needs to go outside for a smoke. He said sure as another volunteer was coming in to play with him. Outside I saw my Friend S I walked up and asked her what was wrong, was Kim alright. She got her heart last night! Oh my...are things good...Yes...I can not believe it. I get to see her in 1/2 hour. It was long, but finally it is done. We both just stood there crying. What a wonderful thing...Yet so sad. For another one has lost their life and gave it back again to Kim. Such a hard thing to think about! Told S to come and get me when she saw Kimmy and we would go for coffee. Well things continued as usual. But we added school to Justin's day as well. Each morning now a tutor would come in for 1/2 hour and do school work with him. He really looked forward to it and it kept our lives busy. Between the tests, Tails, crafts, stories, school and physio Justin had a full schedule! Another test was scheduled for right after chemo so we had to wait another day before we could go home. I re-booked the plane and went for the I.P. Justin is put to sleep for this as they take spinal fluid out to test for cancer cells. Well here we go again...had booked out of the House, cleaned everthing up, went for the test and was told we could not have it done till later in the day. Which meant could not go home today. PLUS...we booked out of the House! We have no ROOM...Again...We could not fly that night for sure because of the test so I was going to be at the hospital for the night. We found a couch and that is where were slept...well Justin slept I sat next to him till the morning came. Now I just wanted to get home! Next morning we were off. Got home to the same stuff. Dishes all over, bathroom a mess, stuff everywhere. Had to take a taxi home from the airport as everyone was at school and hubby was away again. Got home...Justin was happy with everything, and I just cried....cried and cried.... Hugs Butterflymom |
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That week at home now was spent, cleaning up, preparing meals for when I would be gone. Hubby came home the day before we had to leave again. We could NOT go to the boys hockey games because Justin's counts (Blood) are low after Chemo, so can not take any chances. Listened to their stories, and did the medical stuff that had to be done. Kept very much so to myself...feeling that way my downed spirit would not interfer with others. Justin was his happy self, and we continued our daily walks in the field. We would walk to the back of the field, or should I say I would pull Justin on his sleigh, then we would lie in the snow make Angels and then pick pictures out of the clouds. The horses would come a running to be with us, and as we laid on our backs...they would keep watch. We went down trails collecting 'Tresures' as Justin would call them. Made SnowMen every where on our voyage, using branches and sticks for arms hair whatever. Usually in the evening Justin would skate with on of the boys and this would give me "ME" Now not sure if that was good. Because that time was spent thinking and planning our next move. I was coming up with many ideas, contacting Dr.'s all over the world and just getting more and more information. Unfortunately the outcome was the same. Really NO CURE! Instead of falling apart...It made me realize the importance of here and now. So my energies went to the moment with Justin. Still searching never giving up hope but living life to the fullest as things presented themselves. Weighing things making sure that it would not put Justin back in treatment, but making sure he wasn'e going to miss things too. The night Hubby came home was a quiet one. I was feeling very much so deserated so really had NOT much to say. Listened to things going on at work...but really didn't care. The night before called the house to see if there was a room. Yes their would be but not till later in the day. So packed our stuff for another hopefully this time only our week of Chemo. Got to the hospital and was excited to see our new family. Talked and caught up with what had happened to them over the week, and headed to the clinic. Justin was being admitted and Chemo would start that night. Next morning after getting Justin cleaned up for his day, we were heading to the playroom when all of a sudden I could feel Justin shaking. I looked down and he was crying so hard he could not speak. I stopped, bent down asked what was wrong? He kept crying "Kimmy...Kimmy Needs ME" between the sobs he would reapeat this again. It didn't take to long before one of the nurses came over, as I said before...Justin NEVER cried, so the initial thought was he was having a reaction to the chemo this time. His body was shaking like a leaf...tremblings all over and crying..."Kimmy Needs Me Kiimy Needs Me" The nurse returned back to our room and suggested that I go see Kimmy. Justin piped UP..."NO..I have to go!" You can 't Justin you have your chemo running and you can not leave the floor."Well Take It Off...Don't you know Kimmy Needs" Nurse sat with Justin and I ran down the stairs to see Kim. Just as I got to the floor Kim's Mom was walking through the doors..."What are you doing here?" she asked...I quickly explained what had happened up stairs with Justin and said I just came to see Kim. Just as I looked towards her door, people running all over the place...Dr's coming from every hall...I asked "What is going on?" S answered Kim is having a 3A heart rejection. Simply this means Kim's body was rejecting her transplanted heart! Oh MY...I really couldn't even say anything. I hugged S and told her I would be back. She just stood there watching, praying and not even really noticing anything else. I ran back upstairs...to find Justin and the nurse reading a book. The nurse chirps...and how is Kimmy? Not too good she is having a 3A heart reaction as we speak. Justin looked up...very sternly said..."SEE...I TOLD YOU KIMMY NEEDED ME!" and that was it. The nurse just stood up and said he had to leave...I could see the hairs on the back of his neck and arms standing. I sat next to Justin and said what do you want to do now? Go to the playroom , when the volunteers come you go to Kimmy's MOM, now she Needs you! Just short plain to the point. O.K. I will. Didn't take too long for this to get around the hosital and we had Dr.'s nurses, workers volunteers even parents asking us how Justin KNEW? "Straight Line" is all I would say. Because to tell you the truth, I was still trying to figure it out. Last day of Chemo and all Justin could do was ask over and over again...when can I go???I have to go see Kimmy? When he finally had his flush and we were ready to head out to the airport. Justin bid his farewells and said lets go right now to see Kimmy. I told him Kimmy was NOT doing well, that she was sleeping all the time and right now could not wake up. "Oh MOM just take me there." Got down stairs...really worried as Kim was loaded with tubes, she had blown up... do to the steriod treaments and she really looked terrible. Justin was insistant, and put my wheel chair next to her bed...so I can see her. Did what he asked, of course S was there and she and I just looked at each other. Hearts breaking seeing this lovely little girl all hooked up to things. Kim had been in a coma since the rejection, and hope was dwindling away. But Justin once he got where he needed to be...grapped Kim's hand said" "HI Kimmy me Justin...you are going to be O.K. now. I have to go home now, but when I get back we can play" Kim opened her eyes...pushed a "K" from the breathing tube and smiled. WOOOOOOW...I just stood there tears flowing down my face...Kim's Mom was looking at me, again tears but the biggest smile and a nurse had come in as Justin was talking to her and she was now calling Dr's and nurses from all over the place again. I said we better go...Justin said O.K. Bye Kim see you in 2 weeks, and again through the tube..."YES" Left...I was trying not to think because the tears would come. Had to get home that is all. Justin was his normal happy self but turned just as we got into the taxi and said..."See Mom, Kimmy Needed me, but she is O.K. now" Couldn't even respond. Got home, hubby picked us up at the airport, to tell me he was leaving the next morning again...Said nothing...Boys were busy with school and hockey and other activities so it was Justin and I again. Family members were calling but you know...their lives were going on too. My Friend "C" though...she was there every day. Just sat and talked, made lunch, did a craft with Justin. Funny thing about this is that my friend has Agraphobia...but she was there...Drove herself too. She helped me clean the house, as it was a mess again. If she asked once she asked a million times...what can I do for you...my answer nothing! Time to go back and this time...I'm looking forward to it. I had done tons of research so sent my questions in and knew this was going to be a big dicussion. Main question... lets do something else. Why stay on a protocol that has 1% survival of Justin disease. We have nothing to lose...Also we get back all the tests that were done the last time and the time before. A big one this time...we will find out where we are in the treatment and Justin's progress which remember is NOT suppose to be good! Arrived put our stuff away and headed to the hospital. Justin wanted to see Kim so we went early. Kim was up in a wheel chair when we got there, she was more her proper size now and she smiled the biggest smile when she saw Justin...K, both said at the same time...you two go for coffee. So "S" and I went for coffee. She was looking very tired and now tonight she was going to to go back to the house to sleep. She had been in Kim's room since the episode and we laughed because other than washing she still had the same clothes. She assured me she had changed and that it was just a coinisidence LOL Sure sure... Got back took Justin for his blood and clinic. Talked to the Dr. and Like I said yes...long one. He also added that Justin would not be getting a bed today but probably tomorrow. So once he was in his room our Primary would come to talk some more. The short and sweet of everything...Once on a protocol can not change unless there is a problem. My thought is...Kids with cancer's probablems sometimes cannot be fixed...so why would we follow something like that? I had some ideas and wanted to share. Justin mad some comments that maybe he could go in on Thursday night so he could see Alex the WoodMan and then go to Tails before Chemo starts. Told him when there is a bed...then that is when we have to go. Guess what...Told you he had a direct line...no bed the next day so Alex the WoodMan and "J" his helper had Justin for the evening. Now Justin has girlfriends everywhere. He asked everyone want to be my girlfirend, and with his ice blue eyes and smile...no one has refused him YET! So now "J" was his gorlfriend and they would go and play games together. There were a few of his girlfriends that Justin just didn't like to share and "J" was one. So off they would go to the quiet room, one day they went walking and another time he took her to the basement to play hockey. Thursday got into hospital and yes...Justin got his wish right after Tails his chemo started. I went outside to find a lady sitting at MY pillar. She was looking so lost. I intoduced myself and she said her name was Judy. Her daughter was flown air ambulance and was up on the 5th floor. She has had many problems and believe she has Crones. She is in alot of pain and tomorrow they start all the test. She wil porbably have to have a colostomy. She was staying at in her daughters room but needed to get out. We talked over 2 cigarettes and then said once kids are sleeping I would come and get her to go for coffee. My other friend was on opoosite chemo times as me so we get one night together now. She is coming with her son and I'm leaving or the opposite. Picked Judy up around 1:00 a.m. and off we went for coffee. We talked, both from the North and made plans to met again the next day. Asked her if she knew about the Ronald McDonald House she said yes...but NO room. Told her to call each day. Eventaullay someone will leave and then you get the room. Met a lot of new people this time...I guess just opening myself up to more people now. Justin well...he was making friends all over the place. He talked to everyone... People would drop by just to say hi. They would leave telling me he has such a great personality and Beautiful Blue eyes that light up his face with his smile! This time there was a new diagnosis on the floor and the girl was also from the north. Although we did not know them...in we went...North is HOME now so when anyone from the North comes in you just go to see them. It is like our hidden family comeing out! The girl was 13 and needed to go for a port. She was insisting NO WAY... So the staff had asked if I would go and talk to her. Sure and of course Justin came along. Well I didn't do much talking...Justin had his shirt off look see this is my Port...and you know what ,you want one. All the BIG needles will really hurt if you don't have this. By the end of the conversation which I only talked to Mom, the girl was buzzing front desk for her nurse to schedule the Port! LOL it was funny...I would have talked in circles first...NO NOT justin...take the shirt off and this is what it is like! If you don't get one...watch out...you are going to be crying everyday. Then it will be too late. LOL straight to the point! We said our good nights and headed back to our room. As we were going there was another new lady...she was crying and crying...her husband was holding her and they were wheeling her daughter into a room. Ahhh another new diagnosis. This girl was 16 and her Mom was a mess. I over heard they were from our home town so went back to see if I knew who they were. She was standing outside the room crying her eyes out. The nurses were trying to comfort her but she kept backing away. I said Hi I'm B and are you O.K? She fell into my arms...no... my daughter has cancer. I just held her, convinced her to come to the quiet room where we talked. She calmed down for a bit, and I told her I KNEW what she was going through. Told her where our room was and that she could come there anytime. Found out as well that her nephew and my 2nd son played hockey together. The next morning the newest lady came to the room want a coffee sure...we went down stairs. She was saying that today her daughter was going to surgery for the port and biopsies. Told her to hang in there unfortunately this is a waiting game and you will see this real fast! She had her Husband so I kept my distance, but was there when the daughter came back and again she turned to me. Her hubby went with the daughter but she was so emotionally distraught that I think the hubby was glad I was there as well so he could be with daughter and knew his wife was not alone. The other girl also went for her Port and Justin was waiting for her. It's hurts now...but you will be glad... Another day...done... |
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