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Make the Best of today...and believe me Justin knew exactly what this meant. I was just following along for the ride. The next few days were much the same, treatment appointments and waiting time. We were meeting more and more people from the northern towns and all with their own stories to tell. Friends from the House were great and each day had our coffees and chats on the balcony. As I explained before this is the only place you can smoke in the House, so our balcony became our therapy room of sorts. People sharing , some crying, some mad as all get out...but when we left the balcony we left alittle of our problems behind. I remember one night sitting out there with lots of people and a lady coming in. She had been at the house for about a month. Then went home for a week and now was back. He little daughter was to have a bone marrow transplant. Had a week to wait so went home for that week. She was back with terrible news. The tests today showed the cancer was back and there was nothing more they could do. She was besides herself and sat in the corner in a ball. Shaking and shivering. I asked if she was O.K. She answered NO and explained. The next thing I know all of us were around her in a circle. Some crying and hugging some looking in silence. I was talking to her asking her what exactly was said...and she said "It's Over...my 18month old daughters life is over because they do not have anything more for her." I learned she had a brain tumour and they had exhausted all the chemo now and the bone marrow translant was the last hope. BUT she had to be in remission before that could happen. Now they want me to decide what to do next? How do you decide that? Well what a question...Tears streaming down my face I held her hands and said..."There comes a time that your daughter will tell you what to do" She looked at me...and asked how..."Go to night and hold your daughter...look at her deep inside...listen quietly to what your heart says...this is where the answer will come!" Listen to no one else...just you...not the Dr's family or friends...Listen to your heart while holding your child! She asked if I would come back to the hospital with her. I said yes after making arrangements for Judy to watch Justin. Justin was excited that he would sleep in Judy's room tonight. Over to the hospital we went...I sat silently in the room while my new friend held her baby. We were there for almost 3 hours. Her Hubby lived away from Toronto and he came in. I excused myself saying that I would see her tomorrow. That night was spent in tears...many of us sitting downstairs just wondering again WHY and Where Will this go? All letting our own fears surface...THIS COULD BE ME NEXT! All just wanting to find the right answers and yet knowing we were all in some sort of trouble here. Was still down stairs when Justin and Judy came down. Justin cheerful as ever, singing coffee in the morning and tea at night! Hi Mom...Me and Judy had a sleep over...we had popcorn and pop. We had lots of fun! I took the next 1/2 hour to shower and get ready for radiation and then go to the hospital to see our new friend. Did our stuff and on the way to the hospital saw my man. I waved but he kept on walking. He sorta knodded his head but that was all...FUNNY! At the hospital Justin wanted to go to 'Marnies Lounge' where he can play air hockey so brought him there told the volunteers where I was going and that I will be back shortly. Got upstairs to see C signing papers...she saw me and hugged me said thank you so much, her husband came over and said you must be B thank you so much for what you did last night. We are taking our daughter home. She will spend the last days in her own bed with her family all around. Tears streaming down everyone's face now. Even the nurses were crying...and C looked at me and said...you were right...Brianna has had enough...and yes...she told me last night with her eyes. So I know, what we have to do. Thank you for helping me to listen to my little girl. Bid our farewells and headed back to pick up Justin. About a week later we got word that Brianna had passed, again the silence entered the HOUSE...another one. There have been too many...and we just seem to be adding to the list. Each of us fearing that our child's name will someday be on that list! Praying for the strength and courage to go on. Praying that we get through today! I recieved a call from Brainna's Mom at the HOUSE, we talked and again she thanked me for helping her understand. It wasn't me...you just listened to Brianna. Yes she had, and Brianna died in her arms, knowing how much she was loved and cherished. Knowing that Mom and Dad had given the greatest gift of all to a sick child...the Love gift for the "Right to Die"! The one thing I have seen over and over again, is that children in their own ways... Ask for the right to leave. When the parents hold on, the child hold on. I'm not talking HOPE here, I'm talking in our hearts we know...but NO WAY this cannot be happening to me. Regardless what is happening the child will not let go. I have watched in silence this happen over and over again, and I kept telling myself...I will not go there with Justin. There were times when things were going really well for Justin that I would go and hide to avoid other families. Especially the ones that had a child that was not doing well. You feel sorry and hurt for them, but you are having a positive time with the treatment yet...you feel wrong in being happy. Your emotions are just so mixed up...so I would go and hide. Every time you saw someone the first thing that is asked how is and the child's name...Great..and they tell you theirs is in big trouble. Like when Brainna's Mom came to the House that night...I just found out that Justin's MRI showed NO tumour. The Dr's were just excited, as they expected a little change but nothing like this. How do you share this...when a friend is told her daughter is dying. You just don't. So mixed emotions lived with us as well. Knowing when and who to tell and when and when not to tell. Life is so abnormal...but somehow we get by. Another thing that happens at the Hospital is that when you hear of one re-ocurrence or death you hear of many. Spring and Christmas seem to be the worse times. Kids that had a clean bill in the hospital cancer back but another type. Staring over. You learn very quickly to read the eyes of everyone. Eyes tell the stories...regardless of age, gender, or profession. You learn to KNOW just where everyone is by their eyes. New diagnosis has that dazed fear look; regular treatment has the fear, but... look; re-ocurrence has that desperate, Dear GOD help me look; and the end has that dazzed now what look. There was another family on the floor and her only son had received word there was nothing more left for them as well. Telling them they had to go home. Mother pleading that she could not cope with it. Dad saying O.K. Well the day they were to leave...Mom had a complete nervous breakdown, on the floor. She had to be brought to the hospital next door. Now the child had to stay as Dad ran back and forth to 2 hospitals. The sad thing was...Mom was NOT with her son when he passed. She had not left her son's side during all the treatment and now when she needed to be there for both of them, she was in the hospital because the system pushed her over. Again LISTEN...when they say they cannot cope...LISTEN. Often wonder what has happened to them. Many families split up after a medical crisis. Everyone is at their own level of grief and worry and they cannot cope with the stresses of others. I have seen this happen as well. Watched loving couples...fall apart and end with divorce papers. Now both in worse of a mess than before. So many lessons for me as I sit in silence watching. One day after school Justin came running to me and said my friend is gone. Who I asked...you know that 'guy'. Well that 'Guy' was a boy that would play in the hosital play room with Justin BUT whatever Justin wanted to play with the 'GUY' wanted it. Justin would get frustrated with him, but always gave him the toy. Many times Justin would just NOT go into the playroom when he was there. Both Mom and Dad were there for all of his treatments. The night before I over heard the two of them arguing over a treatment change. Mom said No and Dad said Yes...as long as one parent says yes...treatment is a go. Well they did change the treatment, and the next afternoon the little boy passed away. Again...he was palliative and both parents knew this. Mom wanted to bring him home and Dad wanted to try something else. As Justin told me that, I looked to see them both walking off the floor. Yes...Tyler had passed and they now we going home to make the final arrangements. How Justin knew not sure...one thing though, on the floor they do not say...when someone has passed. Doors get closed, but that is it. really didn't want to know how Justin knew...Just knew he was right! On top of all the emotional stuff you have to fight sometimes families. Again watching in silence...we continue. Hugs Butterflymom |
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Hospital routine was our life now and when things came up to change the routine we grapped it. Justin got another invitation to a golf tournament. It also went really well. After all was done and it was awards time, with a silent auction...the tears really began to flow. A group of men that were golfing together, got together and took a donation for Justin and I. They handed us a hat full of money. I really did not know what to say. The tears were falling the simple thank you just didn't seem enough, but that is all I could muster, and then Justin was presented with a HUGE picture of Curtis Joseph then goalie for the Toronto Maple Leafs. Justin any time he could talked about hockey and it didn't take too long for everyone to know who his favorite team was. This Man bought the picture at the silent auction and when it came time for him to pick up his picture he called up Justin. Gosh the eyes...Justin again, carried a picture that was bigger than him, and so proud that it was his. The picture hangs for all to see today. We also were invited to McHappy Day 2000. Ronald McDonald Restaurants do a McHappy day every two years now, and the proceeds for the event go to charity. The house had a few restaurants in the Toronto area that were giving their proceeds to the HOUSE. Familes were going to go, but again an early morning deal. But Justin loving every minute of all these things wanted to go. We would be at the Restaurant by 7 and leave to go to his Radiation treatment for 10. The media stuff would be done by 9 so we had enough time. At the restaurant which was close to both hospitals, had an area waiting for the families. We had breakfast and coffee...tons of coffee for me and Justin had his juice. Every person that came into the restaurant were greeted with cheers and appause just because. We were having the time of our life. Then the guest personality came in It was Silken Laumann, the Olympic Canadian Rower. Just to cause trouble I started singing row row row your boat and everyone joined in we laughed and laughed. Justin looked up at Silken and Silken looked at Justin...don't ask me what happened, but a BOND like no other. The two were like one. Justin right beside selling food at the restaurant, Silken holding and talking to media with Justin in her arms. Justin even went outside to sit on the Police Motor Cycle and before we knew it he had the sirons a blaring. Silken asked if Justin could continue on with her to the other restaurant, but I told her that Justin had Radiation. She said O.K. then asked if she could come to the house to visit before she left. Said sure. Justin was ripping he wanted to go with Silken and kept telling me to call the radiation place and say he was too busy. LOL Headed for treatment and when we entered the floor applause and cheers for their celebrity. Justin had been on T.V. so many times that I think the other patients watched the television in the mornings just to see if he is on. Justin smiled at everyone, but told them that he was suppose to go some more...BUT OH NO...had to come here. Some laughed and others said well Justin if you didn't come we would miss you. He added real quick..."well you could watch me on T.V." LOL always had a good answer. When he went for treatment he told all of them that he was very busy today...but had to come here. He was suppose to go with his friend Silken and now he couldn't go. He got over his madness quickly and got excited to tell everyone at the HOUSE about the event. Only problem was everyone else went back to the HOUSE and we went for treatment. He saw Judy and said...Judy you want to hear about this morning? She always wanted to hear what Justin had to say...so a HUGE smile and he sat next to Judy but not before she made coffee and both talked. House manager saw us and came and asked if we wanted to go for supper tonight. the Olympic Rowing team is having a fundraising supper and a few families were invited. There was going to be about 6 people from the families at the house and 2 staff. Said sure, but what do we have to wear? Well dress up ...HMMMMM have no dress up clothes, what about all the families get Ronald McDonald Shirts to wear and the kids and then we will look O.K. he agreed and went to find shirts for everyone to wear. No money to spend on fancy clothes so why not wear the house shirts. Justin needed another one, because his was full of paint from painting the Moose. Justin asked if Silken would be there and House manager said YES...she was the one that invited the people from the HOUSE. Well off we all went, used the House Van and off to the fancy ball. Justin was excited as usual and when he saw Silken yelled his head off..."Hey Silken I'm here!" Well lost him again until the night was ready to begin. Silken brought Justin back to the table as she got ready to act as Master of Ceremonies. There was a huge screen and it was showing different rowing events of the last olympic races. Justin saw the Canadian flag and Yelled "LOOK CANADA! Mom Look CANADA!" Everyone laughed and then the cemeonies started. Silken introduced many people then added that she had special friends in the audience tonight...named each of the kids from the house and each stood to applauds. When Justin was named he stood right up and waved to everyone. Supper was great and when the intermission came Justin took off with Silken again...he was going to meet all the rowers for this olympics. He was in his glory meeting all the peeple and of the course all the girls he asked if they wanted to be his girlfriend. Everyone agreed and he was delighted how many girlfriends he got that night. LOL All in all it was fun. I had time to breath, Justin spread his cheer everwhere he went. At one poit he said to me I'm hot lets go outside. I said O.K. and lets go to the bathroom as well. Sure thing MOM...so off we went. Was standing outside when Justin meet a man that was at the ceremonies, he asked the Man having a good time? The guy said yes I am, looks like you are too..."yeah, but wanta race?" Anther older gentleman was there as well and laughed but the next thing you knew there was 4 older man and Justin racing in the lobby of a fancy hotel. People all over watching and cheering like it was the olympics. Guess who won as usual...JUSTIN! Back to the ceremonies and soon it was time to leave. Justin bid his goodbyes and got lots of kisses I must say...people coming from every direction, Silken came over and asked if we were going to be busy tomorrow, told her treatment in the morning but afternoon or night is fine. Made arrangements for a night visit. I asked if we could have something at the Hosue where people could get pictures of her and them she said of course then we would go to our room and talk. So arrangments were made. Put a sign in the elevator that Silken would be at the Hosue at 7 for pictures and autographs...the place was packed. I think families brought their friends from the hospital as well. The kids were all thrilled and Justin sat patiently waiting his turn with his new founded friend. Something happened on that McHappy Day, for both Silken and Justin...a bond that just was...just happened when their eyes met...forevermore! The following week there was another golf tournament...this time it was with the Hockey Hall of Fame. There was going to be 38 former NHL hockey players there plus other golfers as well. Again another fundraiser for the House. Justin heard Hockey and that was it. YES...we will go! Made a really neat thank you. Got one of the mini stickes that Alex The WoodMan made and added Justin's picture to it. When we got there Justin's thank you was placed on top of all the autographed hockey sticks that would be given as prizes. Justin took off with Dan and after an hour or so came back to the club house to check on me. I was fine, but he had to go to the bathroom. When we came out there was Kris King...Justin yelled "Kris King...I Missed you!" Dan now was going to get a break because Justin was going to golf with his plastic clubs with Kris. Now the funny thing is we were at the Glen Abby, where Tiger Woods golfs, and one of the pros came over to us shortly after we got there and had a full set of golf clubs Justin's size with a pull bag and all for Justin. He said thank you Please give them to my Mom. I knew by the way he was saying it...he would never use them...he had his plastic set which he was very proud of and was not going to change his clubs for anything. After Justin had gone out to golf again, I went to find the pro...thanked him so much but said Justin will not use these...they are very expensive and we really apprecate you thinking about him, but this is really not necessary. He understood laughed and said a true golfer will not change his clubs. He truely did understand, and I just felt that it would be awful not to use such a great set! Back for dinner and awards and again, Justin would be giving them out. Now...pictures are not allowed, but because Justin was part of it...pictures were going everywhere. Autographs and the works. Everyone was really happy because usually you would not beble to do this. Justin talked with all 38 former players. When Carl Brewer came up to receive his award, he joked that Justin and him went to the same barber...LOL Both Bald. Apps that played for Philadelphia came and gave Justin an autographed authentic hockey shirt...I had to grap Justin and put it on and kept saying don't say anything...He looked at me...rolled his eyes and I rolled the shirts arms about 10 times for his hands to come back out. Justin came back to my table which was close to the awards area and said "BUT mom I like the M'Leafs" I know...but you will hurt his feelings if you say that...rolled his eyes again gave more awards and came back again. BUT...MOM!!! Justin don't say anything. Then Kris came over with a shirt for Justin...the eyes lit up off came the shirt, and on went the Toronto M'Leaf shirt...the biggest smile from ear to ear, and all was well again. At the end Justin gave the organizers his thank you mini stick and Justin recieved a autographed hockey stick by all 38 players. There was a group picture taken with Justin and them all and then when it was almost over he yells..."O.K. boys golf is over... lets play hockey..." Off a bunch of them went to play hockey on the Glenn Abby golf greens. Tons of people watching and laughing their heads off...then Justin throws his gloves off and yells FIGHT FIGHT and 3 players and Justin are rolling around on the greens. People were coming over and saying what a wonder boy he was, and also adding that he really shouldn't be playing with that stick...it is worth lots of money with all the signatures. The other sticks had about 5 names on that was it. Hey...it is his stick, and the worth is what you see...my son smiling and enjoying LIFE! |
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We met so many people at the house and hospital, some were success stories while others left in tears. All with their own stories to tell. We met another family who had been at the House for 7 months. Their middle child a boy Warren was in the hospital having a bone marrow transplant. His older brother I believe was the recipent. So Mom Dad, Brother Donald Sister and Aunt were all at the House tending to business. Justin and Donald hit it off great. Warren was at the end of the treatment and doing very well. So these people were finally looking at going home. Donald loved basketball, and of course Justin his hockey. Although Donald was older than Justin he would come in find Justin and out they would go on the balcony to play hockey...Justin with a M'Leaf Shirt and Donald with a Rapters shirt . They would play for hours. And each time they would see each other a the Hosue they would run upstairs to get their shirts on. One weekend while Donald was away from the House a group from the Rapters club came into see the kids. Justin enjoyed all the games and treats to eat and was talking to everyone as usual. All the kids there got tickets to go to the game that Wednesday and one of the players that must have been 7 feet tall walked over to Justin and game him 2 tickets. "Hey buddy you going to come and see me play? I'm going to bring you right on the court for you to throw the basket ball...would that be nice?" Yeah that's nice, but I'm not going!" Why he asked..."Because I like the M'Leaf's but Donald likes you guys so I'm giving him my tickets so he can go, you can bring him out on the floor though he is good!" Everyone laughed, and the player offered to give us more tickets so Justin could go as well...No Thank You Donald will go with his Dad. The players left and Donald came in shortly after supper. Justin ran for his shirt but also picked up the tickets. He had made me promise NOT to say anything. When he returned Donald was sitting so of sad like. What's wrong Donald Justin asked Oh I missed the players today...I really like them and now I missed them...Don't worry because you are going to the game on What Day MOM??? and you are going to go on court with them and shoot the basket ball. Donald's eyes lit up and looked down at the tickets that Justin was pushing into his hands. Donald went NUTS!!! he was jumping and screaming, Justin jumped backed then smiled and jumped up and down yelling yahoo yahoo Donald is going to the game. It was so funny, and all happened so fast. Donald must've hugged Justin about 10 times. His Mom came over with the Aunt and asked how we got the tickets. Told them the whole story and said YES...they are going to get Donald to come on the court and throw the basketball. She was so happy for her son and both gave me a hug! This weekend also saw us saying goodbye to the other Kim and her family. The second heart transplant went well and it was time for them to return back home out East. We had spent a lot of time together so the tears were just there. Every time we looked in each others direction, the tears came. Gosh so hard...yet so excited that this is one of our success stories, but at the same time, knowing we may never see each other again. We had a final dinner together and the next morning they were leaving for the airport early. Up we were and Justin had Butterflies that we had bought at one of the stores and he gave them to Kim, her Mom and Dad. See Dad was the hockey coach on the balcony so Justin and him formed a strong bond. The taxi came they left and we all returned to the balcony for coffee cigarettes and some talk. Oh how hard...saying goodbye! A notice went up on the elevator that the house was going to be getting avisit from the Princess of Nigeria. It also was asking that families that are available are invited to a get together in the kitchen. So we should be done treatment so yep we would attend. The day came and limosines by the 10's were in front of the house. Out stepped many women all dressed up guards and drivers opening doors. Oh my...all the kids had Ronald McDonald Shirts on and all waved to the entrenage. Gosh...Talks by Mayor and some other public figures and then some man from Nigrea spoke then we were going to the kitchen. Introductions of all the kids and their parents were made. A presentation was given by one of the other children there and we sat down for sandwiches and juice. Justin went up and asked the Princess where her crown was and she laughed. Pictures were being taken all over. Then the Princess came to Justin and asked if she could have a picture with him. Pictures were done again and she bent down and kissed him on his head. You could see the tears in her eyes as she looked down at him, Justin turned around and hugged her Neck, gave her a BIG kiss right in the cheek and other women in the group were wiping their eyes. Just at that moment in through the doors came 3 brother and their Dad. A surprise visit. Now the Princess got to see what this house is all about. Justin yelled out"My Brodders look Princess it is my Brodders!" He ran to them jumped up and hugged them all. Dad was wondering what was going on and soon found out that the Pirncess was here. They were wondering how they got in. There were guards in the front, but they just walked in. Mind you they were big guys right behind them too. Justin now went and introduced each of his brothers, he is always so happy to see them and likes to put on that this is HIS house and here he is the BOSS! So today was a great day to do it. I was so glad to see the boys and Dad. We had talked but not seen eachother for a few weeks now with all their activity. The House Manager knew they were coming but didn't tell. He had also got some tickets for the Hall of Fame and so later that is where we were going. One miute saying goodbye to friends the next minute meeting a Princess and then FAMILY! It was a great day! Taht night we went to the Hocket Hall of Fame.Justin was in his glory and there was a game that you get dressed up in goalie pads, gloves helmet and mask and stick. You go in this box and pucks come flyin at you from different NHL players. Well the boys all did it, then Justin wanted too. Gosh the pads were as big as him...the boys were telling him what to do and the pucks were flying. Then one came from Wayne Gretsky, Justin was just standing there, couldn't even see the pucks, but some how he moved his arm the puck hit his arm and he kicked it out. The place went wide. Justin was yelling I beat him I beat him...I won. Mean while about 10 others went out and in. LOL He told everyone he saw that he beat Wayne Gretsky. There were other games as well, and they all tried them. I just enjoyed not having to think and seeing the family together again. I stood back and watched as they all had a great day. The next day we were going to go to the Zoo and then the Safari. This is going to be great. I packed some things, including small bananas so hubby didn't see, and off we went. Left early in the morning to hit the zoo and then went to the safari. Both were great. At the zoo #5 son threw some bananas into the oranatangs place, one saw him and followed him right around the exhibit. He kept looking and reaching his hand towards my son. Finally when no one was watching #5 gave him a banana. Hubby knew it had to be us, even though we kept trying to keep ahead of him. We laughed all day. The Sarfari was something lese. You go through with your car or on a bus. Taking your car is at your own risk. All the animals are right there and when we got to the baboons they jump all over the cars. We had a riot. Not suppose to open your window, but #1 son had to put bananas on the roof. Well the baboons came from all over . Our car was full. The car in front had it's rubber from the windows pulled off and the strip of medal on the side. They pulled that like a roll of fruit roll ups. We all laughed. When we were going to leave this section the worker had to come and shoo the Baboons off our car. They KNEW where the food was. Hubby kepy saying we were going to get kicked out...we all laughed. The next part that was funny was going through the giraffes Justin started yelling take a picture take a picture...there was one licking the wondow of the car. Of what? "Giraffe boggers"...Oh gosh...we did and laughed all the way. And you know what we are probably one of the few families with a picture of Giraffe boogers! LOL Hugs Butterflymom |
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Another great day with wonderful memories. This is what we needed, happy days with tons of memories that will keep us going. Like anything else the time comes to say goodbye. Family left about noon the next day. Again just Justin and I left. Justin was even sad this day...so we went for a walk down to the beach area. Just to take time for us two. To watch the waves roll in and to play on the play gym and riding toys that are available. Just to walk the beach, collect what ever treasures may have rolled in. A quiet but re-connecting day. Next few days were typical hospital scheduled days. We went for appointments and waited forever. Justin seemed to be quieter than usual and may times I asked if he was O.K. Yes he would always reply. But there was something up. One day we were at the hospital waiting and Justin asked me..."what am I going to do without my Hockey Buddy?" I asked what he meant by that, he replied "I don't know" Saleem was still in the hospital and had gone through quite a bit. He had surgery, more chemo and now radiation as well. He was reacting badly to everything so the poor guy spend most days in bed. We went to see him Justin played a game then watched T.V. with him and Mom and I went outside for air. She told me things were not going well, but her hubby was looking for alternative treatment in the States. They are NOT giving up HOPE! Went back up Justin and I got ready to leave and said we would see them again tomorrow after radiation. The moose on the loose in the city was in full swing, but unfortunately people were breaking the antlers off and damaging the Moose. One even had a huge whole kicked or pounded in the side. On the way home Justin saw some kids that would come for assistance in the house next to where we were. It is called the Covenent House and they help Street Kids. Sometimes you get a real variety of kids there. One things though, Justin seemed to even win them over. On the way passed Justin yells into the court yard..."Hey guys...come here!" Before I knew it there were about 6 guys and a couple of girls. "You see that Moose? that is My Moose and if you see somone trying to wreck it...Beat them up K?" Well...sure thing there buddy, hey Justin how are you anyway..."Good but watch my Moose!" well must've worked because many of the Moose were damaged even in the area and ours was there Antlers in place and believe me I watched some of the kids from the House next door tell people hey Look... don't touch. Justin sure new how to pick his friends. Oh one more story about those kids. Well as you can imagine the dress was wild, the tattoos and earings all over the place and every colour hair you can well imagine and some that I really do not think have a name as of yet. We were rushing to get to the radiation appointment and some guy was there with what looked like a giant coconut on his head. The guy was talking to some other kids form the Hosue and saying "hey Man what do you think?" they were saying that it was really neat and where did he get it. Justin yells out..."That is the stupidest hat I ever saw!" Well I couldn't help it I started to laugh...because it was...the guys looked down at Justin and one of them said hey there Justin going to treatment? "Yep, and that hat is really funny looking!" Then they all agreed and we went on our way. The guy wearing the coconut was not too impressed with what went on...but it really was stupid looking. Days went by, saw friends from before and said goodbye to friends. Coming and going and right now we were staying. Making the best out of each day. This weekend coming up was an in the hospital deal and also the gay parade. We were not going in until 4 that afternoon so I decided hey...why not go and see the parade. Well never saw it before and thought what harm....WELL here we were the streets packed and Justin and I are in the front. All of a sudden Justin yells "MOM look bare BUTTS!" Everyone around started to laugh and I looked up and sure enough just enough covered and that was it. I tried to turn around to leave but there were too many people in the area so could not do it. Justin was yelling and hooping it up and thought this was the greatest parade he ever saw. The next thing I knew I saw reporters and cameras, gosh...hope they didn't get us. Finally got out and headed to the hospital. Got our bed and Justin started his treatment. Later that evening the parade was being re-aired on the T.V. Justin saw it and called for the nurses to come and see. I looked up just before they came in and low and behold there we were on T.V. Justin yelling Bare Butts and me trying to get out. I had to laugh, but thank goodness the nurses came in right after that. Justin was just ripping it up...bare butts people went in the parade... bare butts and he would start laughing his heads off with all the nurses. that night was a bad night, 2 children lost their battle to cancer. The doors were closed and when that happens you know something is up. I saw mothers weeping and fathers walking in a daze. Again reality sinks in..."Where is all this headed?" but as soon as that come sin you try desperately to change your thought. Next morning was quite on the floor. All the nurses were also having a hard time with the deaths right now. It seems too many were losing their battles. We had more volunteers than normal so I had time to go out for awhile to sit and think. Met some of the other families outside and find out one of the kids that had passed last night was Kevins' son...Oh no...he was doing so well, I thought they were near end of treatment. Yes...but complications set in. Something about kidneys and liver. You see the treatment can cause just as much trouble as the cancer at times. Saw Charlene out the side of my eye, she was sitting by herself...I went over and asked how thing swere going. He son was waiting for a heart. Not well...many problems and now he is so unstable we are off the waiting list. Oh NO...It is just a matter of time. NOT another one! Yes it was and 2 days later we learned that her son also passed away. It comes in flocks... then it seems to quiet down, right now...news was NOT good for many people. At the House Donald came in to tell Justin they were leaving on the weekend. They were finally going back home. Even Justin was sad at this one. Oh NO...who is going to play with me? Donald gave Justin hug and said everyone plays with you. We were happy for them, but again...more goodbyes. The next few days saw people leaving and new people coming in. A family from Winnepeg came in. Their daughter was in for surgery. The Dad and son were there as well to keep the Mom and sister company. They were staying till after the surgery but then had to leave. The Mom seemed very shy, but before long Justin was talking to them all. Then he introduces everyone and then says there now you are friends. Justin had received some tickets to the Blue Jay game but decided he didn't want to go. I said we had to find people to take the tickets as it was not good to let them go unused. Justin asked the new family if Dad and brother wanted to go and you would have thought they recieved a lottery. That was one of the things they were hoping would happen, but the game tonight was sold out and the next one wouldn't be until after they were to leave. Justin gave them the tickets and added that maybe when they come back they could play hockey with him on his arena. Friends leave and New ones appear. Justin found them everywhere. Hugs Butterflymom |
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Trying very hard NOT to write today. Emotions are scattered today, with NO specific reason. So not sure where this will go today. BUT...the song Streets of Heaven come to mind. Oh how crowded the streets of heaven must be. Why do you need them? One day they will be yours forevermore, but right now we need them more! Oh Please have Mercy...We need them more! They are our Angels, and they already have a home...Please Please have Mercy ... We need them more! Life just is...and some of us have to let go...oh how hard it is to say goodbye to one who is loved and cherised so. We will never forget the way we felt that day. We still have friends going through a Living Hell...Those words...You have to carry on...Have you forgotten? We fought for our child's life...Some of us Lost MUCH! Goodbyes stay forever, deep in our souls. The friends of yesterday remain in our hearts. These people that sat in silence, held our hand and hugged when it was time. Reliving the pain and frustration. Time for the masks again. Thinking that maybe it is best NOT to get close to people. BUT...that last only a second as new people come to the HOUSE! We now have a new group of friends. Again many coming from the North, and Justin finding friends in each family that came in. Angie from Winnepeg, became Justin girlfriend for Life. There was another boy from Hearst there as well, and Angie and him hit it off very well. BUT...Justin would just wiggle is bum right in between them. Smile at G and snuggle in to Angie. We all laughed when he would do that. BUT...She was his girlfriend for life. Justin was talking to Dan one day and told him maybe he needed a girlfriend...dan agreed and Justin said he KNEW just where to find him one. We were all listening to see what he was about to say. Getthe car Dan...and I'll show you. Dan had just bought a new sports car...two seater so there was NO room for anyone else. Just the way Justin liked it. So Dan made arrangements to coem and pick up Justin the following day. Yep he would tell everyone going Girl Hunting with Dan. Now listen to where the spot was..."Gots to go to McDonald's have chichen and fries then you will see some girls there. Then go to the beach...there are lots there too." In other words...Justin wanted Chichen and fries and then go to the beach to play on the toys. But not with MOM he wanted to go with Dan. We laughed as the two of them got ready for their adventure for the afternoon. Justin came back with stories like no other. Yes they went to mcDonald's then the beach. They found lots of girls and when we asked where did they sit? he quickly answered we put them in the trunk...no room in the car. The place was in stitches laughing. Justin had an aswer to everything. When Angie said she was upset that he went Girl h7unting...I thought I was your girlfriend...he smiled and said..."Your my Girl friend for Life!" Oh well then ...all is well. We made great new friends and togther we all fought our battles. People came and went, but there were a few of us that were togther longer. Angie had her surgery and things didn't go as they would have liked. Angie was now heading for a life of chronic pain, and would have to search for treatments for that as well now. Justin spent every minute of every day with the people. He would sit with them, talk, play games, snuggle and sometimes just rest in their arms. Like I said he was very much a people person so when ever he could snuggle he did. We continued our daily radiation and Wednesday chemo and ever scond weekend in hospital chemo. Justin actually did very well with all this treatment, and now we are seeing more and more children doing exactly the same routine. We were coming close to the end of this bout of treatment and going home finally. We had 4 months of the regular Protocol which I refused to be on really so that if something came up now, we could add or take something away. We were packing some thing sup sending them home with family that came to visit. Getting ready for our day...Our day that we finally get to go home. More tests and stuff had to be done, just to see where we are. Radiation Dr. asked if we go the full treatment or if we wantd to hold some back...FULL we have nothing to lose right now. We were at the last radiation treatment when a trip on a Prirate Ship came about. It was in the morning and it would mean no radation or NO ship. Justin was excited to go, he would get dressed up and along with other kids form the house they would go for the morning on a ship around the harbour and back around 3 or 4 in the afternoon. He was so excited. I told him we would have to reschedule his treatment then. That morning we memtioned to the nurses abotu the trip and then they told uys to talk to the Dr. We made arrangements to talk to him, but he felt NO we could not reschedule as it was important for us to stay on schedule. Well I added...hmmmwhen ever there was a long weekend we were re-scheduled and when ever somethign came up we were re-scheduled. Justin has a chance to go on a Pirate Ship and really wnats to go...I know BUT....Well lets just say...tomorrow Justin will go on the ship, so you can believe two things...one he is sick and can not come to treatment or tow he is on the ship and having tons of fun. Justin pipped in..."What he say Mom?" I said he said NO and he replied.."Hey...don't you knwo I got Pieorities!" Well I laughed...looked at the Dr. and siad..well you heard him...so sorry we will not be here tomorrow. That was it. Looked at Justin and said...yes Justin we are going. Yeppiii was his relpy!. Next morning saw us fixing up a costume form his own cloths. We had a bird so sewed it on his shoulder. We made a patch for his eye and bough a cheap swored which he was very imporessed with. He was so excited and we met the rest of the group downstaries for our adventure. Some of the parents were also coming which was good for me as it gave me some company as well. Thew day was great and the weather could not have been better. There were games, and dancing, singing and food...lots of food. Everyone had a great time. Back at the House all the kids that were able to go wore their outfits for the rest of the day. The House became the Pirate House. They played Pirates all night long. Next day saw Justin wearing his prirate suit to treatment and was telling everyone how great it was. Even the Dr. saw him and Justin said too bad you could not come...it was fun! Near time to leave...final packing, have a few more tests that have to be done then we go back to the 1 week here and 2 weekks home. Mind you never believe d that really ever happened except for the first 2 rotations. Oh well will nto worry about that right now. It would just be great to get back home. 3 Months...the Boys were planning a party of sorts for Justin too so he was all excited about that. He had all these ideas of what they were doing. Finally tests were done, and yes...we were going home. Had tons still to brign home, but hey...we would manage. Justin now had his Hockey stick all signed, and he was NOT letting anyone take that. We got to the airport to find out that due to renovations we were at the wrong terminal...How do I get to the other one. I was sitting and wondering now what...then the darn Bag broke. Oh brother now what. A man that worked there came over I guess he saw how frustrated I was. He ducked taped the suitcase then called someone to come and get us to brign us to the right terminal. It took about 15 minutes to get where we had to be but we made it. We boarded and yes...Justin had to give up his stick, but the man put it in a bag and sent it under the plane. Justin got to carry it right to the palne watch the guys put it under then we boarded. Gosh it felt funny...we were going home again. Just sat wondering again...Now What...going home to start again...O.K. stop...at least we are going home. Justin was excited becuase the boys said they bought him somethign and that we were having a party tonight. He could hardly wait to get home. Finally landed this time seemed to take so long. Off the plane we gopt and everyone was there. Famiyl and friends...waving and cheering as we came down the ramp. Justin was again start struck and just smiled.People in the airport were also clapping there hands...I gues contageous.LOL We arrived and all was well. Got our duck taped bag and of course Justin was waiting for his stick! Got home to a clean house...and people waiting htere as well. The boys had got the outside pool ready for Justin to use and there was a bike for him. His eyes opened so wide I thought he was going to burst. He was so excited. A beautiful two wheel bike with a HUGE bow, and there was the pool waiting for Justin. Mind you No money for a deck so the boys had taken a picnic table and fixed that up to get in and out of the pool. They even had a board rigged up so you copuld not get into the pool unless it was taken away, and it was locked up. Justin was so excited. Thern the boys said that tonight we are having a BIG bond fire...just for you! Justin was so happy...I was lost...I just didn;t know where to turn. I was happy but sad...I left my support system, all the people that were there every minute of every day. Knew exactly how I felt without words...I was home with family and friends,,,but feeling so alone! Tried to shake it off, but tears were just there. I kept saying it was because I was glad to be home...but reality was...I was grieving my extended family. The day and party was great. Food, Family and Friends...but again...that longing...that missing of MY extended family! It didn't take too much time before be got back to routine again. Going for Blood checks and then preparing for our trip back. We were back to the in hospital chemo so called to see if there was a room...thank goodness yes, but not available until later on the day we arrive. tht is O.K. we will go to the Hospital and get set up first then I will go to the House. I actually looked forward to going back. I kew one of the families were still there. Anna and Angie were still there and I looked forward to seeing them. When we arrived Justin was given a room, last test results were just coming in and then we realized he needed another echo before he could get his chemo. Over we went to wait for the test. Saw Anna and we hugged each other. Angie was waiting for her results but it looked liked there had to be another surgery. Gosh...when Just waiting. Anna was gald to see us too, she really missed us being at the house. Seemed as though most of the people had left and now the House was full of new people again. Finally got Justin settled and called the Hosue to see if they would leave my key at the front desk. I would go back with Anna so would get my key then. I had decided that instead of staying at the Hospital I would go to the house to sleep and return in the morning. Just a better sleep and Justin was O.K. with that. Later that night Anna and I walked back to the House. Got my key put my stuff int he room and went downstairs to have a coffee and ciagrette. Got down to the kitchen with all different faces. saw a family that we had talked outside of the hospital so talked with them Nicholas was doing O.K. and was about ready to go home. So they thought. Nicholas was born with out an immune system, so had a bne marrow transplant. Both Mom and Dad have been through a lot. BUT...at least it seemed like things were going better. Met them each nioght to walk back to the House together and usually met walking back in the morning. Justin treatment went well, and it was time to head home again. Made our plans for someone to pick us up at the airport and got home to mucht he same as before. Dishes piled, house looking like a storm had hit, and Hubby away. Oh brother...back to normal I guess you can say. I was upset, but no use saying anything...I cleaned and called Anna to see how Angie made out. Unfortunately Angie was having surgery the day we left. She was alone and very upset. I called and things again did not go well. Angie was in lots of pain, and mom was crying. Gosh...again here is a friend and I can not be there to help her out. Talked for awhile then told her I would call again later that day. Did and Angie was heavily sedated due to the pain...Anna was not leaving her side and sounded so tired. When it was time for us to return for treatment, Anna and Angie were going back home. So we would miss each other. Although we had a daily talk...she would not be there when I get back. We arrived and again were lucky enough to get a room. We arriived the day before becuase it was so long and tiring arriving the same day. Justin and I had a good sleep and headed to the hosital. Well back we were to the typical routine...NO no beds...O.K. call when there is one. Headed back to the House. Met more people this time again...and had our daily talks with Nicholas's parents. Things were not going well now, and Nicholas's Mom's Parents had come to help out. I got a call one night still waiting for a bed, from Judy...she had gone back home, but things were not good and they were heading back by air abulance to Toronto. She was so upset...but told her Justin and I would meet her in Emerg. Poor Judy... We got ready and headed over to the hospital about 1 hour after the call. We waited there for about 1/2 hour and Judy came in....She was so upset. But...glad to see us... |
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Judy had a relieved look on her face when she saw us there. Oh how I knew how that felt. Having someone there...not feeling that loneliness so many of us feel. Knowing that you have someone to lean on...someone to share your fears...someone who CARES. We were in emerg for about 3 hours until they finally got a bed. Judy was going to stay at the hospital, then call to see if there is a room at the house. I told it it was full, but call each day and eventually you will get in. That is exactly what happened She was coming in the night before Justin and I were going to leave again. BUT...that is O.K. Not sure how long she was going to have to stay, but felt so much better in Toronto with the specialist than back home where locums come in every second week. We bid our goodbyes not sure if she would still be there when I got back. Which she wasn't. Justin and I headed home again. Each time now...I was feeling more loney. Looking forward to our trips back to T.O. not looking forward to all the nurses visit and blood checkup and running that comes to going home. Having the support connection continue via phone and e-mail, but not having that hands on stuff. Yes the family and friends were there, but time was spent explaining and answering questions...I was tired of that. In fact whenever we would have a Dr's meeting now, I would get the Dr. to call my hubby. Tell him what you said and answer his questions I just cannot do it anymore. I found that when I was answering hubby's questions I was adding tons of my own opinions in to it. He always had questions, and wanted to know exactly what the Dr. said. I understood that, but finally said then you come to the next meeting. Justin was doing fine. He played with his pony daily and played with his imaginary friends. He had many, but so many of them were his friends that had passed. He would talk to them tell them to wait till he ate dinner and things like that. Hubby would ask him "who you talking to Justin?" He would answer..."Oh Dad you don't understand Mom does!" There was always work to do around the house and one day we decided to cut wood. #4 son was home so we got the wood ready for chopping. Oh brother it is a hard job, so we decided instead of chopping lets make chairs. Justin was playing with his imaginary girlfriend Jenn and he was filthy. They were playing tag or something and he would always end up in a huge puddy...clean off his face so he could see and away he would go again. Both my older son and I laughed our heads off. Gosh if the Dr's saw him now they would have a fit. LOL Son and I worked on our chairs, we laughed and finished them up just as Dad came from work. It had been a beautiful sunny day not a cloud in sight. Hubby came over to see our comphy chairs we called them. Big huge chairs for around the fire. the ones you sit in and push your legs back and forth as when you were a little kid. They were huge! But they took up the wood and that is what counted. LOL Justin was dirty and ran to see his Dad, he hugged him then looked up to the sky. In a loud voice as normal he says..."Hey GOD...keep my cancer awhile a little bit longer K Thanks!" We all stopped looked at each other but said nothing. We continued on to finish up, then Justin yelled..."Look he answered me Look!" We all looked up to the sky where Justin was pointing, and there was the most beautiful rainbow you could ever want to see. It actually had 2 rainbows one leading into the other at the top. We just froze. Even Dad just looked to the heavens. #4 son, shivered and said I got to go, and Justin adds..."See yous got to say Thank you sometimes!" Again everyone stopped and said nothing. #4 son had gone into the house and hubby and I stood there looking at the rainbow. Hmmm, there is Justin a straight line straight to the heavens and they we are his family and he is trying to bring us all in. It was like a painting, then shortly after disappeared. Justin just went on with his business doing what he had to do. That evening we went for a walk and brought Dad this time out in the fields. Justin told Dad to lie down on the ground and look up to the clouds...what do you see? They did this for a few minutes but by this time the horses were coming and Dad was a bit worried they would step on us. Justin and I laughed...Of course they would not step on us...We do this every day...they just come and herd around and wait till we move to the next palce. Dad was not comforatable and Justin piped up..."Dad can't come next time MOM...he is too busy!" O.K. settled then...Dad you cannot come next time. The rest of the time was spent much the same as usual. We recieved a call from a lady we meet and she asked if we would come over for coffee after one of our appointments. Made arrangements for the next day. We went for blood and all was well so made our arrangements to back for more treatment. Stopped in to visit. Justin had met this lady when he was very young, just an infant, so really does not know her. We entered the house and Justin immediately asked do you have a cat...yes I do 2 oh...where are they? Well one is here and the other is upstaris she is older and sleeps longer. She will probably come down soon though because she heard the door. Could you go and get that cat. I was really surprised, told Justin wait and wondered why he was so persistant. Actually held his arm gave him a motherly tug you know...stop tug, and the eye. BUT NO...he would not stop. We went to the kitchen, and made coffee but he kept asking and asking about the cat...go and get her...just go now. Finally the lady said O.K. Up the stairs whe went. I told Justin that he was not being very nice...you should not keeping asking people for something or asking them to do things they really do not want to. Justin just rolled his eyes and went to wait at the bottom of the stairs for the Lady to come back. The lady did come back but with the cat wrapped up in a towel. Justin said ...give me the cat...she said Oh no dear...I think the cat is very sick...no give me the cat. M looked at me, I shrugged my shoulders and say if you want too. She added that the cat was losing control of her bowels and urnine, BUT Justin insisted GIVE ME THE CAT! Justin sat on the chester field with the cat then laid down next to her. Stroking and talking to her. We both just watched...I was getting uneasy now and just wanted to leave. Drank my coffee and then said that we had to go and get arrangements for us to leave tomorrow. Justin did not leave the cat...I said O.K. Justin you have to give the M her cat now...we have to go. He sat up looked at M and said..." Cat is going to leave you now...just hold her like this, and does this, she likes it!" Added..."Cat doesn't want you to be sad...she is happy now...look just does these things!" As he stroked the cat from head to end of tail. Oh brother I just wanted to go, the lady was crying and Jusin was insisting that she hold the cat under her chin and stroke it the way he said. We were not leaving till he saw her doing it right. Finally we left. Gosh glad to go, but said nothing to Justin. Got home to the the phone....the Cat had just died right in her arms... She wanted me to tell Justin that although she is sad right now...she knows that the cat is happy and thank you. Gosh wanted to get off. Justin pipes in "the cat is gone now eh?" Yes Justin she is..."that's O.K. mommy she is happy!" Hugs Butterflymom |
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Appointment was cancelled till tomorrow, and Hubby starting a new project that will see him away for a year with weekends home, so I decided to write more today. Feeling like I am right back where I was...not that long ago. Writing this, brings up the emptiness and lonliness that seems to be part of a mother fighting for the life of a child due to illness. The wanting to make things better, but knowing deep in her heart...what lies ahead. Seeing the signs, but no one else does. Seeing the lessons that are being presented but putting aside trying desperately not to go there. Feeling that lost feeling...feeling betrayed and wanting to run...knowing there is no where to go. Wanting to re write the chapters that lie ahead...knowing in your heart what it is, but also realizing the chapters are already written and the part I play is how I follow my path. I talked to many people about the path I was on. The path I DID NOT choose but was thrushed to me...one September morning back in 1999. The path that was going to bring great sorrow, yet now I know the great Love and Friendship that also came with the path. At the time...feeling many emotions...wondering how I would ever get through this ordeal. Sitting in the evening is the tough part. When everyone else has gone to bed...you creep up and sit in the stillness of the night thinking. I would always say...hate when this happenes, because the truth and reality always shows it's face. I went over the commitments that were made...Quality of Life, Thin Line between Treatment and research, Justin will know when enough is enough, and Quality of Death. NOT really knowing what any of these are going to be...but knowing somehow...we would not falter. Death was showing it's face to us over and over again. making me think...is this what is coming? I watched as people would not let go of their children, and they linger...pain and fear around....the sadness and tears...NOT what I wanted for Justin. I watched as people lost pets...again the grief and pain so real...watching as people grief. Talking to parents that are sitting at the side of their child's bed...waiting for death to come. Watching their eyes. The pain so real...yet lessons for me. Knowing that when the time comes...I had to listen to Justin. Leave my emotions alone and way back in my head...and do what is right for him. Knowing that this is NOT what I really wanted to do. Wishing and praying for that miracle that drug that will take all our pain and sorrow away. The next little while I really had to fix my mask. It was getting really tight and at times again hard to breath. I read the test results, watched as everyone around was so happy with the results. Knew we were ever so close to be the success rate for Justin's Protocol. The one I refused to be on after the re-ocurrence. One day talking to our Dr. I said to him...well we are near our end of treatment...things are looking good...I'm anxious to read your final report. Why he asked...Well we had 1% chance when we started. Had a re-ocurrence and that left us in the hole. When he reaches the end of treatment he will be your success case and how do you write in the hole success story? He just looked at me...laughed and said only you would think of that. Well it is true. AND yes...Justin was the success story of this protocol. We finished treatment and he was cancer free. When someone finishes treatment all the nurses and volunteers on the floor throw a big party on the last day...People were clapping and dancing all around. I stood in silence. Dr. was also there and he asked if we thought of a bone marrow transplant . Said I did my research and that the bone marrow has NO help with Justin's type of cancer. BUT he said...Justin is so different we just wouldn't know unless we try. Well like a hammer...NO WAY...this is the thin line between treatment and research I had said ...didn't know at the time what it may be ...but here it was. No not going there. Are you sure???Yes I am...O.K. but maybe talk to one of the Dr's from bone marrow transplant. NO NEED! My answer is NO. Justin had to come back in another week for final tests after treatment so we were going home then coming as out patient for a few days. We left the hospital with 3 months to look forward to. After the tests we would have three months of nothing then a check up...finally my son is going to be a boy again. NOT a boy with cancer, but a little boy who can love life! Port was still in so we did have to go for flushes at the cancer clinic back home, but that was once a month. Blood test...H*** no forget it...I would know when something is not right then and only then would we go. I told the Dr. this....he raised his eyebrows and said this doesn't surprise me either. Home we went knowing that we had 1 more test visit and then 3 months off. Felt GOOD...even though I would miss our new extended family from the HOUSE...we were going home for 3 months...could really handle this. Got home and we had another party. Our parties conprise of BBQ's and Bond fires, dancing to music and singing. So it was just great. It is usually open house so there are lots of people who come. Just drop in say hi, and go when you want. Usually we have tons of people who stay over...where there is floor space you find people in our house. LOL thats the joy of a large family with all boys! Take us as we are...nothing more nothing less. Was home a few days when my hubby called from work. He said he got a call from Sick Kids...He needs to be at an appointment with us for Bone Marrow Transplant. I went bolistic...yes I was ranting and raving...here they go again...I said NO and now they try to get hubby to say yes. I was sick. I called the hospital and talked to people and let them know I was mad. I talked to Primary and he said it is just an appointment and he felt that Hubby should be there. Sure I said...when you don't like what I say...then bring the weak link in...Please don't get me wrong. Hubby wants nothing but the best for Justin, but he is very much so a paper man. Needs to see it on paper and believes that people go to school and gets their degree and they know what they are talking about. I was sick. That night hubby and I talked about the bone marrow...I could see that he wanted to try anything that may save our son. I was trying to explain that Justin's cancer was NOT one that bone marrows helps. I explained about the bubble boy for a year after bone marrow transplant and told him his quality of life cannot be a given. I told him my feelings and that we were going against the promise we made, about Treatment versus research...but to him it wasn't research because bone marrow transplants are very common. He just couldn't understand. One morning I was sitting crying. My 2nd son said MOM what is wrong? I explained what was happening and that I was NOT going to let Justin go through a bone marrow transplant. He looked at me and said..."MOM we have always all agreed on things for Justin, so why now are we not involved?" We will all go down for the meeting and decide from there. I looked up and thought...this is very true. So everyone made their arrangments to be there Monday morning after Justin's tests were done for the meeting. Told hubby that night he asked why??? Said all the boys have been part of decission making so why not now! I felt so much better. Not because I knew what they were going to decide but they knew what I was talking about. Justin and I left for T.O. had a few days of tests, Meeting was Monday so had the weekend in T.O. Met with new friends and old ones at the HOUSE and went for lots of walks. Monday morning came and we went for our meeting. The Boys and hubby showed up about 1 hour before. Had brealfast and then went to the hospital. The floor was really surprised that everyone was there, and had to get more chairs. the Bone Marrow Dr. came in and said wow...we have a house full. Justin would you like to go to the play rooom? I pipped up NO he is part of this meeting. He jumped up on #1 son's lab and said NO this is my meeting so I'm here. Dr. began his talk about bone marrow stuff. Explaining how it is done, and since Justin would have to be 'self donor' how they would gather his marrow and treat for a few weeks then transplant it back into him after all the treatment is done. Explained the isolation stuff and that NO the boys would NOT beable to visit with their brother. Explained that even Mom and Dad could not stay over and each night would have to leave then come back in the morning. Explained that it would take anywhere from 3 to 6 months before Justin would beable to go home then would be in reverse isolation for about a year after. I sat and listened...I researched so knew all this stuff. I watched as all the boys listened quietly and Dad was writing things to ask later. When the Dr. was done, he looked to me....You are awful quiet...never saw you like this...Listening I said...will make my comments at the end. It took the Dr. about 1/2 hour before he gave the floor for questions. Well then the questions started. There was NOT one son that did not ask things...Dad had a list there and Justin sat and listened looked at me and smiled but didn't say a word. The 1 hour meeting was now hitting 2/1/2 hours. Our Primary Dr. was outside waiting for us...and deep down I was laughing about that...Time someone waited for us for once. It felt good knowing he was pacing outside to see what the outcome would be. LOL Crazy thing to be happy about but I was. Dr. asked again if there was any more questions, my 2nd son Mom your turn. Took my deep breath and began. As you know me I have done the research...Tell me what stats do you have for Justin's type of cancer with Bone Marrow transplants...Well... Just tell us...Well ...none...k and can you promise the quality that Justin has now? Well... no we cannot promise anything...k...and when we do the transplant if and only if...Some miracle drug comes up for Justin type of cancer can we use it? Well... NO...We will have used all possible chemo that his body can tolerate. K, so in other words...If that miracle that my hubby is waiting for with all the research comes around...We are totally out of luck? Yes... K ...Now the reverse Isolation at home...Just to simplify it...Justin becomes a bubble boy right...Everyone in the house wears masks we screen people coming in and Justin is isolatated...I guess you can decribe it like that. So the end result is that what we have we cannot keep , we do not know if this will help Justin and by doing it we make him a bubble boy and isolated for a year and 1/2? Well...that is really putting it simply...those numbers are not neccessarily correct. But none the less not too far off? Well...Yes. K... I already said what my answer is that is NO...now everyone else say your peace now...Number 2 son pipes up ...Well my Mom has not been wrong so far...so NO, each boy said NO one right after the other...then Dad said BUT...well I said ...You are out ruled...So even if you said yes... We all have agreed NO so that is it....Justin pipped up...Lets go home and have some fun. The Dr. looked and really didn't know what to say. His nurse just sat there, wondering what had happened and a 1 hour meeting turned into 3 hours. We all came out, the boys shaking the Dr's hand and thanking him for all the information...We walked out to find our Primary still there pacing and looking over at me and saying NO...right? Right I said...knew it when I saw all the kids here. WELL I said...You want to play games with numbers and stats then I come back with my numbers and these are the ones that count. He asked if we would consider more chemo right now... I said NO in fact we are going home so I will think about it and get back to you. Oh he said we have a bed for Justin so we can start more chemo now...Oh, sorry it will have to wait...Justin pipped in again and said..."Yep going home to have some fun!" Dad was still talking to Dr's and trying to get more information, but the rest of us left. We went to the car to go home. Our family is so large that we had to bring 2 cars so Justin was trying to figure out which car he was going home in...Such a big decission for such a SMART boy! |
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Late today, had appointments to meet. The next 3 months were the best ever. We did what we had to do. Took time to enjoy life. Justin went everywhere. He followed his brothers, and even came home driving the cars...The expression on his face, stering the car home. telling his brothers NO let me. Every time they would hit the country road Justin would yell...MY TURN! We went for the flushes that were necessary, and was told each time we needed blood, but siad O.K. because we are here, BUT no way are we coming back each week for tests, unless there was a problem. They even called our primary Dr. and he said Yes...we agreed that if there was a problem then she would bring Justin in. There was NO problem so why...get picks to tell you your levels are O.K. That is one thing with a child with cancer...a parent doess't need the blood test to tell them that the levels are low. Justin swam each day, we walked in the rain, getting totally soaked and laughing all the way back. We rode the hrses and played good guys Bad Guys. Running with the Horses through the fields and into the bush out back, hiding behind some trees trying to hide form each other. Justin so often said..."Ah Mom this is so much fun!" Yes Justin is was. There was a horse show that came up in town, and that is one thing Justin wanted to do. He wanted to get to be in a show with Cool Dude. So we prepared and got Cool Dude all spift up and Justin too. The morning of the show it was pouring out. My Hubby said you are NOT going to go. Sure am I said. This is something Justin wanted to do. So prepared we did and off we went. Arrived Justin in time for his event and it stopped raining then. He entered the ring to the Announcers: Now entering the ring riding Cool Dude is the Bald Headed Cowboy! Exactly what Justin wanted to hear. The crowd was small because of the rain, but everyone cheered and clapped for him. Flashes everywhere...most coming form us LOL. He did his stuff, Cool Dude was a gem...people had tears in their eyes watching this little boy so full of excitement and life putting his pony through all the paces. Justin won first place and got his ribbon. We got ready to re-load the pony when the heavens opened...and the show had to be canceled. I looked at my Hubby and said...you thought he would not get the chance to ride. Hmmmm now was he or wasn't he suppose to be here? Before we knew it November had come and it was time to get ready for Christmas. Ahhh #2 miracle I guess because the Dr's thought we wouldn't be at the last season together. So take what we can...and make the best of it. Justin was very happy with all the decorations and such. Each day we would put out more and more. The trees were lit, Santa and his Sleigh and reindeers were in the front, and the Elf was climbing the drain pipe to help Santa out when he came. All the preparations for a Great Season. Then one morning nearing the end of Nov. Justin says..."Mom my cancer is back again!" Heart stops...didn't even get that extra thumping this time...just nothing. I looked at him and asked where...He said pointing to his primary...here and here. Oh brother. Got him dressed and went to cancer clinic. Said nothing to them just wanted blood done. Waited for the results and all was well. The Oncology Nurse came over and asked what was up??? I told her that Justin said his cancer is back. She looks at results and says that they are perfect. I said well results sometimes do not tell the truth. I'm making arrangments when I go back home to call Toronto. Think we need a check up. This was a Thursday and I new that Clinic for our Dr. is Monday so would be flying or driving down on the weekend. Called Toronto and they asked if I would go back and get some tests done here. I told them to call the Dr. here and arrange it. Got a call shorty after that telling me the pediatrician wanted to see us at clinic now. Really didn't say much to the rest of the family. Justin and I just did what we had to do. Thank goodness we got all the decorations and such done...as NOW...my mind was well away from the season. We drove back to clinic to wait for 4 hours. The Dr. was busy. Why did they book for this time if he is NOT even coming until 4 more hours? No one knew the answer. Just Breath....Just Breath.... Finally the Dr. came in and we chatter for a minute. I asked for an ultersound just to look at primary and see what is happening to the edges. He said he wanted an MRI. I asked can you get it today? He said NO maybe by next week. I said NOT waiting that long so lets just do an Ulter sound. NO he wanted a MRI. I was upset now...because here we go again...not listening...WHY??? He answered so he can compare. Compare what? Well the other tests that we've done. Well now I was fuming. You never did any test here and you have absolutly nothing on Justin's chart since Feb. You do not know... that he had a re-ocurrence in April and that he had full radaition and Chemo. You do not have any results. He looked at me and said Oh Yes I do! Well show me them. I was MAD! You do not leave a mother who is a nurse in a room for 4 hours with her son's chart and think she is NOT going to read everything. I knew they had NOTHING on the chart. I picked up the chart and said here read...they really isn't much so it should take you 2 minutes. Well the nurse just stood there. I started to dress Justin back up and thought to myself that is it. I really do not need this right now. The Dr. looked back at me after he glanced at the chart, and sheepishly said I feel that a MRI will give us more of an idea of what is happening. That is fine, but today then. Well I'll put him on the stat list but it will take until at least next Friday. Not acceptable is what I said. By this time I had Justin dressed. He said I wanted to check him...for what I asked? Listen here....His cancer didn't wait the first time you dittled around, and it certainly is NOT going to wait NOW! So there is NO need for you to check because you are NOT even sure what to check for. He looked at me...knowing I was really mad now, and said he wanted to check his primary site. I asked...tell me where you are going to look. He looked back at me...said nothing and I left. He didn't even know where to look. What a DAM mess! I got home...emotions right back where they were, and called Toronto. Primary Dr. called me back told him what Justin had said. Also gave the blood results but said...believe me we are in trouble again. He asked if I went to clinic said yes....but they never listen so I left. I have NO time for this right now. If they want to mess with me this time...then they will never forget me... He asked when we could get there. I said for clinic he asked if we could come sooner, I said Have to call House to see if there is room. Called and yes...we were lucky a family was jut leaving. So booked it. Call the airline and Justin and I were leaving that night. Called Dr. and said see him on the floor becuase I will not go to the Emerg again especially if they have to access, so might as well go straight to the floor and see you there. Agreed. Well hubby came home from work and the kids from school and now was time to tell them Justin and I were leaving again for Toronto. Explained about the last two days, and that Primary was meeting us tomorrow moring on the floor. Hubby decided that he would come this time so we would drive down tonight. Agreed...feeling like I really didin't know if I had the strength to go through this again. Justin just was fine...he went about his business, got the kids to bring him to McDonald's for Chicken and fries and got back just in time to leave. It gave me a chance to cry my head off. To be angry and frustrated. Bid our goodbyes once again and headed to Toronto. Got in got our room and Justin was startig to have trouble to walk again. The tumor was starting to show again, and once more his legs and hips were so sore. By the next morning he was wheelchair bond again. Was at the hsopital by 8 and waited for the Dr. to come and see us. Was really surprised because he was there by 8:30. Talked to Justin, asked him what was going on, he told him, but added "Dr, M I had such a good time!" Tears...tears in all our eyes...that is all he wanted was a good time,and he got almost 2 months of it. O.K. stop...have to decide what happens next. In the back of my mind I know that radiation is OUT we used it all up. Knew that protocol Chemo is not working, and also that removing the tumor is again NOT an option...Now what? Today is Friday and know that weekends at the hospital is slow, so know that NOT much is going to happen for the next few days. Primary said he wanted to talk to us again about 5 he was going to check into some trials and see if there is one for Justin to try. Oh boy...do we go there? Back to the HOUSE. Justin really was starting to feel not well and since he was not walking again stayed in the room . We all stayed there but finally I went downstairs to have a ciagrette. I met a lady that said Hi you must be B yes I said and she introduced herself... Kathleen. Hello how did you know me? Well she said from some of the mothers here, they talk about you and Justin all the time. Oh ...yes and just by their decription I knew it had to be you. We sat for awhile. He son Alex had a re-ocurrence in Oct and they were here now until this new protocol will be done. How long I asked 2 years! Wow...found out she was a mother of 7 and Alex was her youngest. We hit it off like we were born family. The weekend was spent very quietly. Both Hubby and I would take time for a smoke but that was about it. Dr. M had given us a trial to look over and tell him Monday morning if we wanted to try it. Justin was sore...very sore but at least the tylenol was helping the pain right now, but in turn making him sleep. Monday came and after talking to the boys and Justin said yes...we would try this trial. There would be test for the day to see if we could start tomorrow. It would be 3 days of out patient chemo then go home for 2 weeks then come back again. Because it was the close to the holidays we would try to get the last 3 down around the 20th and then wait until Jan 2nd for the next 3. Agreed. Lots of side affects on these. So lots to watch for. The main one to expect is diarrhea. Usually starts the same day as treatment, so there is stuff you have to take for that or he will dehydrate so fast. K...lets do it. This time my heart was heavy...the times before it was NO WAY...this is what is going to be done. This time...was... Listen, agree and do. Even Justin had the same mode! I watched him carefully at all that he was NOT saying. I asked him again one night what do you think? "Not sure!" k then we will go for it. "K Mom" Next day started...had the treatment which took about 3 hours to go through then about 1/2 hour flush some blood test then home. Back the next day same thing. 3rd day same thing. Hmmm no diarrhea...are we going to luck out? Went home after 3rd treatment. Knew we were coming back so bid our farewells. Made arrangements for a room, but you cannot book the room so they knew when I would be coming back and they would keep our name on the list for the room. Got home...feeling pretty PUNK...but doing what had to be done. Got the last minute stuff for Christams...made sure the food and stuff were ready and headed back again just Justin and I this time for the next bout of Treatment. Still No bowel problems so we are lucking out. Had 3 more days, Justin was just starting to get back on his legs, but still in the chair. He could walk now holding on to things, so when we would go down stairs, I would watch him watch the kids playing. This broke my heart. He would smile and yeppii with them all but I could see the longing to be right in there like the rest. He couldn't even play hockey. Thank GOD for Kathleen...she just seemed to know. Talked when she had to and kept still when that was needed. One evening just the two of us there she asked ...."what deep in my heart it was saying". I looked at her and cried..."We are Done!" I balled my eyes out. Kept this for this long and now it just came. She sat next to me...hugged me and said nothing. Next morning was 3rd treatment and the 20th and we could go home for another Christmas. Dad just happen to be in Toronto on work so he was going to come and pick us up at the hospital and we would all drive back together. Got home rather late that night, we were all tired so had a tea and went to bed. Justin was just so quiet. Next day found everyone doing last minute stuff for Christmas and ME...well again the run and hide was presenting itself to me again. I wanted to curl up. Justin and I decided that we would go for a walk out back. Got as far as his pony and the pony took a fit. It was really funny. Cool Dude wanted to come too. Justin asked if we could bring Cool Dude and he would ride. I said yes. Put the winter balnket on the Pony and put Justin up...but he couldn't sit up there. He was sliding and falling. Poor Cool Dude was trying his best to keep Justin on but it was not working. Justin started to cry..."What is wrong with me MOM?" I couldn't hold back...Tears and sobs "Nothing is wrong with you Justin it your cancer!" "DAM CANCER" came from his little mouth. I didn't even say a word! Then he looked at me and said..."Mom...I just want to have fun again O.K?" tell me what you are saying Justin, He looked up at me and said..."NO MORE!" I have to stop here...tears and sobs and hearing his voice again...Justin has made his decission and I had to LISTEN...even though my heart was breaking it was a promise! |
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"Do what you feel in your heart to be right - for you'll be criticized anyway." My heart exploded...my head felt like it was ready to blow up. NO MORE...mommy NO MORE! Tears and hugs, looking at Justin knowing exactly what he was saying. Wanting so badly to reneg on my promise. Wanting to convince him, knowing that I could do that. BUT...remembering my lessons through the other children. Knowing in my heart...Justin had spoken...he told the truth...and we are now entering another phase of this journey now...one I knew was coming, but praying and pleading it would never arrive. That day was spent in tears..not saying anything to anyone. Looking at my son and watching. Thinking and remembering. The next day through the tears I asked again...Justin what do you want to do? He looked and said as clear as can be..."Just have fun...No More!" I hugged him and said...O.K. Justin it is your time. Put my efforts back to Christmas...It was just a few days away now, and this time I KNEW it was our last Christmas together. Didn't mention anything to anyone...we needed a good Christmas. Put my feelings away when I could. Made sure Justin was pain free for as much of the time I could. He would come and say...Mom my legs hurt...I would give him Tylenol to take the edge off. Off he would go. Like usual the Christmas day was at our place. Food for everyone, Out side fun and hockey games. Friends came to spend the day with us and even my Friends Mom came to celebrate Christmas with us. It was glorious. Justin was out skating on his rink the boys had made, and believe me we do not do things small. It was HUGE. Horse and sleigh rides all day long while the women did the final preparations for our meal. Many times my Friend C would look out and say Look at Justin he is having so much fun. I would try NOT to look because in my heart I knew...this was the last time. Last time to go on a sleigh ride, last time to skate on his rink, last hockey game, last body check...Oh my ...My heart was aching...Just took peeks as I was afraid I would burst out in tears. My friend would come and hug me, her mother too. The tears just came and went, but everyone felt it was Tears of the season! It was in a way...because Justin was doing what he wanted...finishing what he had to finish. Every year we do a ChrisKingle with the family, but Justin decided he needed to buy everyone a present this year. I also knew he needed to do this. So out we had gone and you guessed it Justin found Butterflies. He bought each family member a Butterfly. Wrapped it himself and when the gift giving was complete he ran to get his present for everyone. The boys and Hubby said Hey Justin you are NOT suppose to buy for everyone...he said I know...BUT here! Tears is all I can say. My #4 son came close to me and asked what is up? I looked and smiled tears rolling down my face and said...He wanted to do it. Not the right time yet to say anything. We needed this time as a whole family. I let my feelings stay in the back except for the wee mornings and dark nights. Occassional Justin would come and snuggle and just say "Thanks MOM!" Oh my when I think of it now...Not sure how I got through it...but we all did. Each day Justin's pain was getting worse. I was hoping that we would be bale to hold off till Jan 2nd, but the 26th saw a lot of pain and theTylenol was not doing the trick. That night was spent up rubbing and kneeding his legs. That night I mentioned to Hubby what was going on. He just looked. Said nothing then the tears...He looked again and said what are we going to do? I said what Justin asked..."NO MORE!" He relied immediately...no call the Dr. we have to bring him back...maybe it is the trial and this is suppose to happen. I cried...No Hun...it is done! I said it...always had it in my mind...but said the words out loud. He just cried while we held each other feeling so lost and helpless. Next morning found me calling Toronto. Talked to Primary and explained what was going.Not that Justin said NoMore...just what is happening. Told him I would really like to wait it out till the 2nd, but need stronger meds. Talked again about what and that I would regulate the doses. I then said...you call the Dr. here and tell him exactly what we need, the dosage etc...O.K. He then called me back and said go to the clinic the Dr. will be waiting for you and will have the script ready. He added You know if you have to...Just come back. Oh you can rest assured that is what I would do. Went to clinic to find the Dr. had left a script alright...Not the dosage we had agreed on and not enough to get us to the 2nd. I said to the nurse call him up...this is wrong. She said but that is what he ordered...NO I said this will bring me to new years Eve...and if I need more we spend the whole night in Emerg with the drunks? I really should not have said that...but it was correct. No way...call him right now. She did and came back with her head hanging. He said if you need more then see him in Emerg. That's it...Never helped before WHY would I think he would listen now. She looked asked me what I was going to do...Go back to Toronto. Can you??? Who will stop me...of course I make all my arrangements in advance. Yes I can go there and we will go tomorrow. Took the script, got it filled knowing now I would have to regulate it with half dosages and full. Why do they not even listen. I called Primary back he told me what he said to the Dr. here and then I told him what he gave me. WHAT??? See I told you and so many others have said the same thing!...When we come back home...the Dr's here do not follow what the Primary Dr has asked for. You people think we make these things up. That is why I wanted you to call...now you KNOW! Made our arrangements to be in Toronto the next day. Justin was in so much pain and the Demerol was just making him sleep, the pain was still there. Called the airline to change the flight from the 2nd to the 28th and was told NO... It is the holiday season...well this is an Emergency...well sorry we will not re-book right now...I was so Mad I said well then "GO TO HE**!" Again not nice...but again another one who would not listen. I hung up the phone defeated...how do we drive down to Toronto 4 to 5 hours with Justin in so much pain. He cannot sit... it hurts too much. You just do what you have to...so in the back of the car he was placed, blankets and all...pillows for his legs and we headed back. Back to the new start of our journey...the one we all knew would come one day...but never prepared...never prepared... never prepared. Emotions are high with everyone, so snapping and tears... little digs and snide remarks...we all did it. I think I was the worse. BUT...not with Justin present...we all had our MASKS on in front of Justin. Got to Sick Kids and had another Dr. He was short, crude in my opinion, and started the conversation off with..."I really do not care how you feel or what you think, My concern is just Justin so here is what I am going to do!" Well my mouth dropped, I looked at him and said...excuse me...this is my son and I do things for him and only him...My hubby pipped in "Don't mind my wife she is very upset!" Oh wow...here we go again...when I need support and backup again...like the other times..."Don't mind my wife...she is upset!" Upset was NOT the word...I was livid, and now my thoughts were clouded with anger. The Dr. just proceeded on with what he was going to do. Morphine...pump...and it will be started now. I couldn't think although I knew where we were on this path, my mind went numb...didn't work I was angry at the Dr. for how he spoke... my hubby for not backing me and now my most dreaded drug is being started. The only way to express the next few hours was LOST, and AFRAID. Trying to find a way out, but there was none. My friend Kathleen had her son in Day Care, so when we went in with Justin there she was. Thank GOD...I looked at her and she said come on lets go for coffee. We went down staris and I exploded...I cried and cried, I smoked and smoked...and said..."It's Done!" She cried with me, but said nothing. Finally we went back upstairs, not really knowing where I was walking but like a magnet attracted to another magnet...just got there. As I entered the nurses were getting ready to start Justin's morphine...I lost it again. I looked at my Hubby and said "This is wrong...This is wrong...and if you were not here...this would not happen!" Kathleen had to take me out again...I lost it...lossing the control I had for my son's treatment, having to somehow come back to terms that this is not treatment, but I had to find that Quality of Death...I knew had to be...but how do you find it...when you are losing your son? It didn't matter now...that my Hubby was lossing a son too, or the boys were lossing their brother...Right now Justin was MINE...and now I changed my mind...I don't want to give him UP! K have to stop... Love to everyone! Hugs Butterflymom
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Wow when I think of it now...if it was not for my newly found friend...I could have walked into the busy streets of Toronto. I could not even breath. The fear that had lingered deep in my heart...has come to pass. The knowledge...here... I had to take about a full day. Couldn't talk to anyone, had to figure this out for myself. Realizing the next step is not close...but here. Trying to find that Quality of Death...Not knowing even what I meant by that. Said the words, but WHAT IS...Quality of Death? Everyone stayed very far away from me. Dr's would come in...I would leave...Hubby would sit with Justin...I would go outside for my breaks. Nurses or Volunteers would come in...I would go for a walk around the hospital...Just needed to be with me...Just ME! No questions...no more thoughts...for my head was full. I was again outside at the Pillar sitting and watching life continue for so many people. I wanted to stand up and scream....hey all of you...why are you smilin and going to work? Why are you joking? Don't you know???? Don't you KNOW??? I sat angry that life continues on...I didn't even want to see people happy right now. I was in a pain that is undescribable, I hurt...so I wanted everyone else to hurt. Then...my Man appeared again. I was watching...but never saw him approach, he just was there...standing right beside me...I turned and looked and for a split second, I wanted to hit him...Looked again...and he said..."Lady...Pray to Michael...Pray to the Arc-Angel Michael. I looked again at him...he was expressionless, he looked right into my eyes...and I cried. He never touched me...only stood next to me...I cried for awhile, someone came over asked if I was alright. The Man said yes...Then I sat in silence. He stood next to me. I'm told now that some of my friends that I had met had come over to the Pillar but the Man shoosted them away. Finally after some time...I looked at him and said thank you. He smiled and said he had to go. Then turned to me and gave ME 2 cigarettes...Oh brother...now the tears were really coming. I always gave him 2 cigarettes...I knew this meant I would NEVER see him again. I stood up...hugged the MAN, he hugged me back and slowly left, turning after a few steps to see if I was still there. I stood watching him till he was no-longer in view. Tears streaming down my face, with 2 cigarettes in my hand, and waving each time he turned to look at me. I must have sat for a few more minutes when one of my friend returned and asked if I was O.K. I looked and said I think so...Kathleen showed up with coffee, and sat with us...before long there was many at the Pillar. NOT talking about Justin but sitting and smoking...saying very little. I went back upstairs feeling...Questionable, but knowing that everyone was going to get through this mess, and that Quality of Death would present itself to me and when it did...no-one would shift it's path. The next couple of days found the Dr's trying to regulate the Morphine. Justin was in extreme pain, even the nurses were in tears when they came to check on him. Cleaning staff would peek in and cry. Justin was such a Happy and delightful boy...here was a child lying there...sedated, but crying out in pain. We had 2 teams of pain management...Pain Management and Chronic Pain Management. When I say team I mean team always at least 3 in each. I look back now...and sorta laugh...I think they figured they had to come to me in Teams...LOL It was NOT fun...I would sit and cry next to Justin...I'm searching for quality of Death and this child is suffering. Our Primary Dr. came in and said they were going to start Palliative Chemo...I knew Justin's blood levels were not high enough for chemo...so not wanting to really dicuss things said sure...let me know when you think you may start. Hubby had decided to go home for a few days, and would return with some of the boys. Of course to make matters worse for everyone it was exam weeks at the schools. Where we were going... I had NO clue. Well I knew where we were headings but how we would get there was the question. I needed that time again just Justin and I. Throughout this whole ordeal it always was Justin and I with the occassional family visit or appointments to go to. BUT...Justin and I. It was what was needed again to get my head on straight. That night after Hubby had left...I was resting my head on Justin's bed. He took his hand and stroked my head...Justin are you feeling a bit better? "No Mommy it really hurts...and you know this pump thing? Well when they push it...It makes me NOT beable to tell you it hurts.!" Wow...like a ton of bricks...we already knew that morphine did NOT ease the pain of muscle and bone pain. I already knew and refused it before. What was I doing? I had backed right away...and was letting the hospital take back over. When I fired the 8 Dr's in our room when they gave up in April...I took an new position. I was the team leader...well this team leader was coming back. The next nurse that came in I told her I wanted to talk to the Pain managements teams...both together. I asked that she let our Primary Dr. know that I wanted to talk to him too. Was informed and yes...he did tell me he was away this weekend and who would be replacing him...but just didn't listen. Not knowing exactly what I was going to say to these guys, but knowing I needed to talk to them. Justin began to cry in pain...and what did I do? Pushed the Morphine pump...He heard the whooosh...looked at me and SMILED...yes he smiled and raised his eyebrows...Oh brother...I just leaned over...after all we had just talked about and pushed the button. I Smiled back and said LAST time Justin LAST Time. I sat and stared at him...now thinking of the last 5 years...thinking of the time and how he came to our lives...thinking too this will all be gone very soon. Hubby was coming back the next night and was bringing #4 son with him. The others had exams on Monday. They would stay till Sunday. The Teams came in and I asked...explain to me again what you guys are all doing? Explain the meds and everything else...I think I can hear you now. They smiled and began to explain. I just listened. Then some lady came in and said she was there to take Justin down for a Kidney and Liver function test. Why I asked...I guess the Dr. ordered it...Well no one told me so NO. By this time a Registered Nurse Practicioner came in. They head these types of cases and she can order and stuff like that on the children. Well sorry NOT my son. She tried to explain why she had ordered this and just to let him go for it while I talked to the Dr's. I looked and said...sorry anything that goes on you speak to me first and then I will decide if...he will go. She looked at me and said...WELL Mrs.V You know that his kidneys and liver seem to be slowing down...we want to see how much? I looked at her and said..."GOD He is Dying...of course these things will slow down...guess what they are going to stop...with these test are you going to put him on treatment of some sort to keep them going?" Well NO..."Then why do we have to know now? Beside you have to pick and pick...looked at him his viens can't take picks...NO!" Then looked and said when did his kidneys start to slow down? She said Yesterday...when you came on? She just looked...then I looked over to the I.V. Gosh who put it so high? Well I did we are flushing him...O.K. here...listen carefully...the I.V will drip just to keep the vien open, Dr's the Morphine is coming down now...and if you guys can not come up with something that helps Justin's muscle and bone pain...then you know what you are all going to listen to him cry. If I want a lala child...I could go on any corner and buy drugs...BUT I will NOT have Justin's last days...like this. They all just looked. At this time...the Lady who came to get Justin for the tests says...Well am I taking him...I said NO she looked at the Nurse, she shrugged her shoulders the Lady then added...well do they know downstairs, and I said..."They will when you go back down without Justin!" Oh...and she left. I then turned to everyone there, and said...we will have another conversation shortly...because my head is starting to work again. They all just looked... some left except for one...he said there was a drug that tricks the mind to believe there is NO pain. Anti-confusive drug...I said bring me a write up about it...I'll read it and then decide. BUT don't give me those Parent drug guide ones that say nothing. I want the ones that come with the drug from the pharmacy. He agreed and would have it sent up right away. Now I never checked at this time if the Morphione was turned down, which it wasn't but right now that was O.K. we would just take the continuous no pushes... Wasn't a great day or night...Justin was in pain...but I knew the Morphine was just putting him in a state that he could not talk and express himself. I also knew we could not take him right off of it, and again thought back...But stopped myself...I cannot change yesterday but ...I can change today. I sat next to Justin most of the time. One of the cleaning ladies would stop in regularly to see if I needed anything. She would even bring juice or a coffee for me. She was so special. She came in and asked if I wanted to go out for a smoke. She said you have not left this room. I looked at her and said Just one...would you sit with Justin? Yes...It was her break and she wanted to sit with Justin. I ran downstairs and just had one smoke. I think I just inhaled it...LOL Back on the floor I could hear Justin yelling something. I hurried to the room to find the Cleaning lady in tears... As soon as I left...Justin woke up and asked..."Leana could you help me??? Get me out of here..." She said she couldn't get him out of bed but could call the nurse he said you Leana just you...but against policy...why won't you help me?? Leana was in tears...I hugged her, and told her it was the morphine talking and asked Justin what was wrong..."He looked at me and Said..."MOM I HAVE TO GO HOME!" Yes Justin Mom was going to bring you home as soon as we can manage your pain. He looked at me and said..."You don't even know what you are talking about...LISTEN...I Have To Go HOME!" Then fell back to sleep. Poor Leana...she was crying and saying my heart is breaking...Tried to reassure her and said come back after again and he may be O.K. then. The new Dr. for the weekend came in introduced himself and said he was on the floor all weekend so if I needed anything have the nurse page him. Really didn't have much to say to him. Next day Hubby and #4 so were coming and Justin was excited about it, but in and out of lala land. They arrived shortly after supper and came in...#4 son had a new mini stick so Justin and him could play hockey on the beside-side table. Justin heard them and opened his eyes...Where are you Brent I can hear you...where are you??? Come here...come here Brent why won't you come here. He was screaming it and #4 son was right beside him... Again tears...#4 son who is over 6 feet fell to his knees...crying..."oh my brother!" Hubby stood there and said nothing he was frozen.Then it hit me...Justin's words..."Mom you don't even know...you don't understand!" The morphine was still too high as a continuous drip. I looked and realized at that minute. I know now Justin...I pushed the call bell said I need to speak to the Dr. and since he was there on the floor he walked in behind the nurse. I looked #4 son now sitting in a chair holding his head with his hands, Hubby still standing and staring and I started...O.K. listen here...I want this Morphine down to the lowest amount. Morphine is preventing Justin from even interacting with his family. That is it. I want it at this level IF I feel he needs more we can use the boltus or asked for an increase. There is NO dicussing this. YOU KNOW...that morphine will not help his pain just put him in lala land...and you know what...he needs whatever time he has to finish business. I nearly fell over...he agreed...I was actually stunned...he told the nurse to lower to exactly what I had said, which was done right then, and then they both left. My #4 son started to laugh..."Wow Mom you had your finger up his nose almost!" Justin piped up and said...what you laughing at Brent? He said Mom and Justin said "NOW YOU UNDERSTAND!" Yes Justin Mommy does and we are going to bring you home soon. Come on Brent sleep with me. They cuddled into the bed together, I left instruction...NOT to let them do anything while I was gone...and Hubby and I left. We went for coffee at a restaurant because we had some planning to do. |
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