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Next day was much the same except this is when Primary Dr. comes back to talk shop. He is coming to listen to my ideas now and see if any can be implemented in to Justin's Protocol. Morning much the same. Except at 11 had the lady from our hometown come to the room. She just wanted to thank me and tell me her daughter was doing much better today. Funny how kids recover so fast from surgerys and we learn really fast that the surgery is the least of our worries. Too bad we didn't get that idea before the surgerys and it would save us so much worry and energy. We talked for awhil and then she said that she had talked to her sister about me. Her sister and remembered our family and added that Justin was the adopted son. She lloked right at me and said..."So you really do not know what it is like to have a child with cancer." Now you all have to realize and I did at the time...she did not mean it like she said. I looked at her and said...oh but I do...you see Justin isn't just part of me...he was born in my heart and I had to wait longer than 9 months to get him. See Justin is very much my son and brother to his brothers. Justin IS MINE! Her response was...you know what I mean...it just cannot be the same. Oviously she was not getting it and I just dropped it by saying NO I do not understand what you mean and changed the subject. Even though she was really decribing how she felt about adopting, it hurt. It hurt tho think someone would even think Justin wasn't mine. Even as I write this I get tears...yet understanding just why Justin came to us and not her family. Thsi left a very bad taste in my mouth and although I still helped her out when she needed it, there were NO coffee's together anymore or long talks. When things were going upside down for her, she came looking for me and I was there, but that was it. Dr. came in shortly after lunch and we sat in the quiet room. Justin was taking a nap so wanted to talk there instead of his room. Dr. started by saying "Once on a protocol we can not change it unless something happens" I looked and relpyed that this was defeating the purpose. Justin has 1% chance of surviving this protocol so why would I want to stay on this. What are the ststs on children that survive? What do you mean? Well Justin WILL survive this protocol, but...what do we look forward to? Treatment can be just a deadly as the disease, so am I going to have a 5 year old on dialysis, bed ridden, brain defective???What??? He looked at me...we do not know. Well if you do not know then really this protocol is a trial and once on a trial then we can try other things. NO...becuase he is on the Rhabdo Protocol which is the same for both types and until there is a problem we can not by law try other things. Hmmmmm doesn't make sense to me. What are you thinking. Well told him that there were going to be Dr.'s calling or contacting him form all over the place. YES I already have got some calls. And believe me that is not the only ones you are going to get. I told them all YOU are the primary DR. but we were willing to hear anything that may help. He totally agreed. I added that my thoughts are...remove the primary tumour, get rid of it. Then lets deal with the end of that and the spreading of the disease. I also added that I felt that we should be injecting the chemo right into the tumour itself. Why do the whole body and the primary wait for it's meds. I also felt that the immune boosters that Justin has been on since the beginning has really helped and that this is something that should be introduced not only to my son but every child with cancer. At this point he said he had a friend in Washington that was workign on immune boosters, they are synthetically made and he had discussed Justin's case with him and he was wondering if we would try this. Said NO...becuase Justin is on natural immune boosters that have been made just for him. So if that Dr. wants to talk to me about that sure, but no sythetic stuff, have enough now. Also what about the chemo injections. Well sounds good and they are doing studies on it but not something that is ready for people. BUT...our chances are nothing... Just at this point the nurse walked ina nd said Dr. you are wanted on the phone...he left came back with a HUGE smile and said...we got all the final results of Justin's tests. HMMM he is smiling and we are NOT in Justin's room so it must be good. I looked and said AND???? And all tumours have receeded, bone marrow clear which we are really surprised of, and MRI, Bone scans and Cat scans show very little. The treatment is working right now. MY response was YES I knew it would, but we need to change something before we have a problem. Mrs.V you should be happy.I am but I am telling you we need to change something. We talked a bit more, talked about which Dr.'s had contacted him and one from St.Jude's has been calling regularly to see what is happening with Justin. He asked me how I got ahold of all these guys...told him not really sure just did, the problem is tyhat I have to say everything I can becuase when I try to get back to them on the computer I cna never find them...we laughed and I added I think they block me out. LOL Our Primary Dr. is very open to Pretns doing their own research and suggestions. We have a great rapore and I'm very fortunate to have him. Some of the other Dr.s and I would have clashed well before now, with all my suggestions and thoughts. Oh yes...I also added that when we return back to our home after chemo I never go to the lab like they want me too, again remember I am a Registered Nurse so I can assess things quite well. BUT...as I told him what is the point going to the lab when I know his counts are low...and they take a fit and want him admitted. I am not having him admitted and so I wait until the counts are on the rise. Really all the ones you need are the prior ones for chemo, so just to let you know that is why you may get only 2 counts before we come back. He just looked and smiled, and I thought they were slow in sending them...LOL well keep thinking that becuase that is all you are going to get. He assured me that he will be talkign to a umber of other Dr.'s and infact has a conference in Boston about sarcomas one being Rhabdo. Hmmm asked if I could go and give my imput and we both laughed. Finished by saying...I appreciate all your are doing and I understand only too well about all the red tape in medicine, BUT...My gut tells me regardless what the tests read...we are heading for trouble. He replyed that we have to continue as is, and to tell the truth he never believed that Justin would be where he is. You and your family are definitely doing something right. I better go and peek in at Justin, or he'll be mad at me. Yes that is very true...Justin now says to everyone this is my body I know...I guess his mothers thoughts are rubbing off. So if the Primary didn't go and ask how he was doing he would be looking all over the place for him and would say "HEY why you talking to my MOM...this is my body ask me!" Justin was awake so I graciously decide this was a quick minute I could go and smoke so I ran downstairs and left Justina dn Primary alone to dicuss the future. LOL rest of our stay was much the same but had to stay a bit longer than usualy becuase primary decided to get the Echo done before we left this time so that when we got back we could just start chemo instead of waiting ahead of time for the test. Sounded good to me. Our 2 weeks home and 1 week at the hosital was getting to 2 weeks at the hospital and 1 week home. We got in Tails again so Justin was happy to be there. He was part of the fixtures I believe, and everyone there looked forward to his intense and dedicated feelings about the play. He would anticipate every move and next one, with so much enthusiam that all the kids were excited not knowing what was going to happen with the exception of a few. So I think it really added to the play. The day before our test and going home again, some wrestlers came to the hosital to see the kids. We were going to Marnies Lounge with is a play place for the kids in the hosital to go. Video games, airhockey which Justin loved, crafts and T.V's. Justin went in and saw the wrestlers, they really took a liking to him and his personality and just as it was time to go Justin said...this is boring do you want to play hockey. GOSH...I nearly fainted...but you know it was boring the wrestlers signing autographs and shaking hands with toms of kids. So after the laughter and my face turning a red as all get out, Justina and 3 of the wrestlers decided to play a game of airhockey. Well it was a media frenzie. Justin took complete charge telling them how to play and the rules. 2 on each side, and ready go. First to reach 5 golas is the winner. The place went insane...Justin barely seeing over the edge, but has mastered that disavantage very well, had the puck drop and he scores...LOL O.K. now we are ready... This went on for about 10 minutes...pictures snapping all over the place, video cameras for the T.V. and people asking me to sign off for Justin picture to appear with the wrestlers. Justin and his wrestler won...and it was time to go. Cheers and we are the Champions rang over the lounge and Justin and I headed back to the House. Did the echo thing and headed to the airport...time to go home again for a week. Hugs Butterflymom Will add more later. |
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Home we went to much the same. Everyone going about there business. Hubby was leaving again in a couple of days. Justin was excited to show off his baseball cap and pictures of the wrestlers. Explaining when, why, and how he got them. Not once but 9 times...everyone had NO choice but to listen. After cleaning up again and making some meals for the next trip, our regular trips to the cancer clinic for blood and waiting for the missed visits by the VON (didn't really matter, as there really wasn't much they could do). It was time to head back. Both of us are eagerly looking forward to going back...seeing our friends. Called the House and again NO room...called the floor...no doesn't look like there will be a room so called our Primary and said...NO not coming. When there is a room I will come. Right now NO place to stay. They were not too impressed but then...they do not pay for the hotel room. And when we are in the hotel room Justin is NOT receiving treatment so might as well stay home cheaper that way. 3 days went by no rooms. Then the Primary called and said that they would make arrangements for the treatment to be done here. How is that possible I asked. Justin has chemo for 5 days then flushes and all that stuff and here the clinic is day clinic. We cannot stop chemo and restart. Yes...they will make arrangements for Justin to have his chemo done in hospital. OH...then they are trained on the floor in chemo? Should be...WELL I knew differently. Just left it said O.K. you make arrangements and we will see what happens. Received a call that afternoon asking if Justin could sit in a chair for chemo. I said yes, but he could NOT for 5 days. OH...was the reponse. Then said O.K. we will get back to you. Next morning recieved a call saying that Justin could come into the hosital. I replyed and the nurse that will be administring chemo will show me her card? Oh just wait. Back...no cards on the floor but someone from clinic will check...NO...you need someone around 24 hours for 5 days. Well I'll have to get back to you. Nothing that day and then another call Mrs.V our staff is NOT trained but we could have nurses form the cancer clinic come in to check. NO...sorry... all or nothing. Again they said that it would take a while to rearrange the schedule in clinic to have a nurse available to do Justin's chemo then. Well I guess we wait. Mean while our Primary called and asked when Justin was getting his chemo here. Told him probably never. Explained what was happening and that I refuse NOT to have a qualified nurse with Justin at all times. He thought we had already had the chemo so was very shocked. He said No you are right...I will get back to you. Not even 2 hour passed and I received a call from Toronto. Mrs.V could you have Justin here tonight. NO but I could tomorrow, have to make flying arrangements. Are you sure...yes I know the plane schedule and there is nothing till tomorrow. Could your hubby drive you then...NO he is out of town working. Oh...k make the arrangements. Did just that, now a week past his scheduled time because there are NO beds available. Did the early morning flight arrived straight to the hosital...to find...no bed until later. Called the HOUSE No beds...I was really upset. Walked about for the whole day. Went to the floor many times to be told not yet. Well 11:30 p.m. Justin and I standing out side the hosital and we get word that we would be getting a bed in about 1/2 hour. Just cleaning the room. Oh brother...needed to be here yesterday but by the time we get the room it will be 2 days later. Makes NO sense. Finally arrived to our room at 12:30 in the morning. Poor Justin was exhausted. Just put things all over the place and wanted to get Justin ready for bed. About 1:00 a.m. a resident comes in and whats to check Justin for his Chemo. O.K. he asked..."what type of cancer does he have?" I looked a him and said do you have his chart it should be there. He looked at me saying.."well this would be easier as I have not had time to read it all" All ...just look a the front page...oh brother...I'm tired frustrated and now 1:00 in the morning someone wants to talk...I didn't even respond. He check Justin over then said..."He is always this lethargic" I looked saying..."no not when we are having a wild party and he is whopping it up...but usually he is in bed by this time sound asleep!" He looked up at me and left. I just curled up and read a book... Next moring was Chemo so got things ready for that. Had more questions and ideas about Justin's treatment and would talk to the Dr. some time that day. I was really tired, and wanted to just hide away. All went well after this. Met my friends, talked ,got Justin to Tails and just was. One day and we get to go home. Now it is a toss...I know that Hubby will be there this time, boys are doing O.K. and I'm just too tired to go home to clean. Decided to myself...that I would do toilets and that is it. They will have to take care of the rest. Someone I never met came in and told me that she was from VON. She wanted to tell me I have been cut off back home. Oh O.K. no problem. But she said so is your card so the GCFS has to be paid by you. I looked at her...said not this time I already have it. She said how did you do that? I went down stairs and got it. Always get it the day before we leave so I have it and do not forget. She said well you are going to have to pay for it. You will get a bill...I said...Oh well...can't pay for it...so when they want they can come and get me and put me in jail...because I won't be returning it and I will not be paying for it. Besides...Jail time could be pretty restful for me. Tell them solidar confinment...I need the break! She just looked at me. Justin pops up "Mom you going to jail?" I just started laughing...couldn't be so lucky! She stated that since VON has not been to our house in the last few weeks...and that is my fault. They called to cancel, I have to come back here, then there are NO beds so I am home the week I am suppose to be here, They call to find out we are not there and it is MY fault?? Don't think so. and Listen. I have the GCFS now, will get it the next and time and next so YOU better fix it. AND...I have an appointment...Justin laughs out "With her Pillar" LOL I look a Justin just smile and said see you later BUD! $5,00.00 a month and they think we can pay for that. Change in my pocket...change in my pocket...no problem here. I just had to leave...enough was enough. Saw one of my friends, she saw my look and followed me outside. Didn't say a word, lit our ciagrettes and she left to get get coffee. came back said I think you need this. Yes thanks I do...and then the tears fell. Gosh we have enough on our plates...why all this BULL...Said what I had to say...then laughed together when I told her what I had said. She looked at me and laughed but relied you are so lucky you can think so fast on your feet. I would just curl up in a ball and fall apart. It happenes to me over and over again...now she is crying...gosh we make a great pair. By this time more friends we have met are coming over and by the time we were done there were about 12 of us all crying over something or other. It must have been some pretty funny site. Right next the PILLAR! Mind you we came up with a great fundraising plan...all the parents of kids at the hospital will stand on street corners with our hats, collect money and give it to whoever needs it to pay for treatment. Laughing we all agreed the break would be nice and we probably could pull in big bucks! Our GOOD OLD PILLAR! Our swearing post, our crying post, our thinking post, our smoking post, our do nothing post. I believe they made that Pillar just for that purpose too. It was frequent by every last person that ever walked into Sick Kids...and I'm not kidding. There is NOT a minute...that there is NOT someone there. On top of all it was...it also gave us strength. Left the baggage and garbage there, went back into the hosital to fill up again. That pillar should be bronzed or something LOL Maybe my next project! That it for today, actually was upset before writing this, but feeling better. Left the garbage at the Pillar . Hugs Butterflymom ...Today 1999 got Justin home from first hospital admission, to dress for Halloween just to watch the kids...he was so sick and still they did not know what was wrong. Beginning of Sept to last day of October...LISTEN.... |
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Didn't want to write today...Feeling emotions I try desperately to hide...But I'm here. We went home again...now upset with the hospital and all there rules, upset because my family is going on with their lives and upset because ...WHY did this happen to us. Justin was fine mind you...he was enjoying every aspect and things that hurt he would blocklout...deal with it in the moment and then it was gone. Gosh...so easy...just do it. Got home and was looking for things to be mad at...didn't take long to find it either. House a mess, no dishes in the cuboard and the floors looked like the horses had lived there while I was gone. WHY????WHY????WHY??? Answers today I seek, but will never really find the answers I want. Got a call from VON thinking that now I would listen to them complain...but no..telling me that if once a month seems to be enough for us that we would do that so we could get the meds covered. Thanked them...really couldn't get mad at that mind you I tried to think of something. LOL then accepted their offer saying I would call one day when I get back...schedule for that week and then we would be fine. The week was O.K. Justin and I spent a lot of time outside. Just taking in what nature had to offer. Sometimes on our walks...Justin would say...lets scream MOM...he knew I was bottling up and needed to let out some of my fruestrations...so scream we did...laughing our heads off as horses would come running our dogs and all. Laughter...yes...that is what was missing...the good old laughter. One day after Justin was tucked in for the night, I was just sitting...tears rolling down my face and wondering "Now What?" "Where is this going?" tears were just streaming down my face...sitting in the dark my house full of family and friends and I feel so alone. Feeling like I have to deal with everyhting, then explain to everyone...trying to get each to understand what is going on. Answering their questions but not having mine answered. It is JUST too Much. Can't do this anymore...then....a feeling or a warmth...I think both...give it to GOD...Yeah right...why did he let this happen? Give it to GOD...O.K. here, take it. Nothing...nothing...nothing. Hmmmm thanks a lot. Sat a few more minutes...could have been an hour for all I knew...then the emotions explorded...I sobbed and cried. I didn't want anyone to hear me so I went outside. Dogs came with me, walked to the back bush...dark as all get out...but needed to get away...wishing I could just run away...hide from this mess. Something inside said...regardless what the tests are showing which is all good right now...there is something wrong. Again who will listen? I'm a MOM...Just a MOM. Darn nation...someone is going to listen to me...Heard Justin's words...lets scream MOM and scream I did...in the middle of the night, by myself except for the dogs, and I screamed and screamed and screamed. Swore, told GOD that he left me...told myself this was my battle alone, told myself that it was O.K. to cry and be mad...yes it is...Not the way I planned...so it is O.K. to be where I was. It was dawn when I went back in...everyone was sleeping then I heard Justin ...Mom you O.K? Yes...just cannot sleep...that's O.K. MOM..Justin Loves you MORE! Tears again...I relyied I Love you More and he said...But I loved you all my life...so I win... through the tears...laughter...yes Justin you win.... You know any disease that strikes a family is hard. It is not One person that gets the disease but instead all the family and friends. Life IS differently for everyone and each person deals with it differently. At the time, it really isn't something we think about, because our emotions are so raw...that we can not think of others. It is US...so tell me why can we not think of oursleves in good times. When all is going well, why do we as Mothers feel we have to do everything? Why do we need that control? These are the thoughts that are running through my head for the next few days. Thinking to myself well this is a great time to get the great idea I have to take care of ME now...no time. LISTEN...NO TIME...hear that before???Bet you said the same words...NO TIME...once I do this or that...then things will be O.K. Take it from me...life is never that easy. Take time for you NOW...when the chance is here, not tomorrow for the next day brings it's own stuff. Stuff yeah, I was talking to Volunteer Mary about stuff...you know we need a room for all our stuff the stuff we can not give away or throw away...maybe a room with a lock...place our stuff there, open it just to add more stuff but go on with our lives. Stuff is still there, but hey...no problems. BUT...there is a problem...the stuff will get too big for the room, and eventually we will open that door to place more stuff and the door will not close again. Then what??? eh???the stuff comes pouring out...now you deal with all the stuff instead of dealing with it one thing at a time. Hmmmm not a good idea me thinks now....LOL This post is more like my feelings then and my feelings now. combined together...making sense of this mess. Trying to at least. The week home was good for Justin, I just had this uneasy feeling...deep inside...as though the axe was waiting to fall. Again don't care of what the test say...A Mother KNOWS! My hubby and boys tried to ease my feelings telling me to remember what the tests show...look at Justin he is doing well. Running, playing, riding skating, doing all he wants to do. Yes...but...MOM no buts...please stop...each of the boys and hubby said the same thing. Then remember MOM...we are at the quality of Life stage of our desicion...keep it as long as we can...we will deal with the rest when it comes...but for now...TODAY! Wow...I keep telling them that...but here I am into tomorrow, not being able to do anything about tomorrow so LISTEN...LOL I was frustrated with DR's not listening...and good OLD MOM is doing the same...LISTEN...deal with today! Although my fears were still there...I tried just to deal with today....hard to do...but I was at least trying. Next visit was much the same, chemo did have rooms wanted to do more tests I think to ease my mind...so 2 weeks in T.O. again. Met more people...Makes you realize how this cancer enters so many lives. Met a wonderful women from ThunderBay. Her Mom was with her, becuase...her 2 daughters were diagnoised at the same time. Same day within 2 hours of each other. One thyroid cancer and the other Leukemia. She was exsisting...Her Mom was with the older daughter that was too old for Sick Kids so was in Princess Margarettes and her with the younger at Sick Kids...both went for their surgeries at the same time for ports, and MOM felt very much so pulled. So my energies went to trying to help her cope. I thought things were bad for me...then you see someone else!!! That is it for today. I do feel better, didn't want to write today, but letting go...letting go those feelings that were so carefully put away with my stuff. Thanks.... |
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Here it is April already. Justin is anxious to go home this time, because for once in a the past year we are going to be home for one of the boys birthday. Justin had bought a few little things and made pictures to give to his 2nd brother. I had a inner sense...regardless what everyone said, saw, and felt...I knew something was up. Had to keep it to myself though, as I didn't want to dampen the spirits. But oh...so hard...MASK on tighter than ever in fact hard to breath at times. Home we went, Primary Dr. is going to fax all the test results for me to read. He is very confident that all will be good as it has been showing. Smile on my face...but heart thumping harder than ever. I waited. Home was good...got there and things were clean...ekkkkk.it felt so good. Anticipating the cleaning ahead. But no...my friend and a few of the boys and their friends cleaned up again. It ws so nice this time. Ahhh...relax...things are O.K. Test results came back...and like the Dr. thought all was good. I kept reading and reading...trying to find something, because my heart was still a thumping. BUT...in writing all is well. One more day till number two son's birthday and Justin was so excited making sure we had balloons and the works...don't tell k mom...it'll be a surprise. Next words...S, I'm making a surprise for you with balloons...you will never know till it is your birthday. Laugh...yes that is what helps us through...Justin and his comments that makes us laugh. It's the 19th, tomorrow is S's birthday and all is well. Justin was so excited for tomorrow he had trouble sleeping. He advised me that he would be waking early to get the house ready for the party. Morning came as it usually does and I did some things for the birthday. Also got things packed as 3 more days and we were back in Toronto. It was 9:15 a.m. Justin called out...MOM???? I went to see him...he added..."Relax MOM...just sit here!" I did looked at him and asked what was wrong. He put his hands up in front of his face at arms length and repeated..."RELAX MOM JUST RELAX!" I looked at him said hey we got to get ready for the party..."NOT SURE...My Cancer is back!" My heart fell.What are you talking about??? He rolled over and a lump bigger than a over sized grapfruit was on his left buttock towards his hip. Can you walk...."NO...that is why I know that it is back. RELAX MOM!" I ran to the phone called Sick Kids for our Primary Dr. to call me back...like yesterday. The Receptionist starts to ask questions, I was so upset I said..."Hey it is your job to answer phones not to ask personnel medical questions, tell Dr M to call me back NOW!" I hung up the phone. waited not even 3 minutes...felt like hours. I looked at the time and it is 9:30. Picked up the phone hello??? Mrs.V Dr.M what is up!!! Well...we got problems...big problems...so I guess we get to try something else. Just like I wanted to do last month. Hey...what is happeneing??? I explained...he asked if we could get to Toronto right away...said yes called the airline and booked the 10:00 flight. Be there by noon. O.K. leaving for Boston at 12:30 so meet me in Emerg. Hung up the phone....tearing streaming, grabbing things...almost like the first time. Grabbing but not knowing what to take. Had already packed some, so at least when my head was on straight I got some things I'm sure. Dressed Justin got ready asked one of the boys to drive us to the Hospital. Called Hubby at work...no answer left message that I had to leave with Justin call tonight. On our way out the door number 2 son comes up the stairs...Happy Birthday I say....he looks at me...where you going? To Toronto! You were right MOM...GOD You were right! Tears no words just tears. All I could think was he had a 1% chance...now a re-ocurrence what does his chances mean now? At the airport got our tickets...tears flowing down my face...I cannot even stop them. Trying not to look at people but having to get the ticket and get through the gates. GOD...this is hard...I'm going through it again. Heart racing...heart pumping like it is going to explode, eyes blurred through the tears, and Justin...sitting in his wheelchair smiling talking to everyone who looked in our direction. NOW WHAT...that phrase kept ringing in my mind. The phrase that so many times came through my head when I sat alone, walked in the back woods or just lied in bed. NOW WHAT! Got to Toronto went to get a taxi and realized I had NO money. Didn't think...had no time to go to the bank. OH NO...Through the tears I thought for a minute. Do I tell a taxi driver I have NO money and hope he takes us to the hospital. It costs a flate rate of $40.00 Now...think... he will just look smile and take the next paying costomer. So what do I do. Justin again just being his usual self. I decided...to take the taxi once I got to the hospital then tell him I had NO money. So that is what I did. Never pay until you get there so...what else can I do. Be honest and I probably would still be there, so just take the DARN Taxi and what happens after... OH WELL... Got to the hospital now it is 12:45. I missed our Primary. Now I have to deal with other Dr's Never rains...always pours... Got to the hospital, got Justin into his wheelchair and looked at the driver and said...I don't have money and no time to talk...call the Police if you want I'll be in Emerg and just left. He Said Nothing...Just watched us go into the hosiptal. I Didn't even think to take the poor mans number of the cab so when I got money I could call him and give him the money. Least of my worries...just went to Energ. Now the waiting. Cancer children cannot wait right in Emerg with all the other children who are sick, so we have to go to another room and wait. And yes...Wait we did. Told them to call to see if Dr.M was still here...don't think they ever did. Because I found out later that Dr. M waited till 1:20 for us to arrive. We had been in Emerg, but they did not call him. It was about 2:45 when we saw the first Dr. He said they would access his port in Emerg. I asked if they do this regularly...he said he thought the nurses did. Waited again...3:25 Nurse comes in to access...I watched as she prepared the stuff and needle for the access. See accessing the port requires a 1 1/2 inch needle to be pushed through the skin into the port. It is not the pleasant and the child needs to appy Emla Cream to freeze the area. Justin having had this done so many times...really knew the proceedure well. He also watched and told the Nurse..."hey you gots to put the needle here, where is the 3 cleaning stuff?" We use 2 here in Emerg.. Oh no...I use 3. I just sat back...Justin was doing a great job making sure all will be well. The Nurse in Emerg was NOT to impressed as Justin said..."You Gots to do it right!" I made the comment that maybe we could just wait and have the access done on the floor when we get there. Just a look...you know those looks? Well time to access...Justin watching and saying "hey...clean here...no way that is the wrong size needle." I didn't even catch that. I looked and said Yes...that is 2''. She added that is what they use...I said NO, but Justin just repeated NO WAY! I should add that there are different sizes that are used for each port. Justin used a 1 1/2. She left again...came back with the right size...then Justin said..."you gots to change those gloves...you can't leave the room and come back with the same ones" I actually felt sorry at this time for the nurse. This is not common in Emerg so why do it now...knowing that we will be going upstairs and they do this all the time there. By the time everything was done, and by the way the access had to be re-done when we got upstairs...forget the reason right now...but told everyone on the floor that will be the last time that Emerg does an access on Justin. The nurses couldn't figure out why...they just didn't wait. On the floor...waited in the room. In came the head Dr. on the floor that day Dr. G hello I said...how are you he asked...not good. We explained what had happened, he examined the lump and said he would be back. In he came alright with 8 Dr's the head Nurse on the floor (crabby) and they all came in to tell me that they have decided to do another biopsy, then if it is the cancer that has retuned then with Justin's diagnosis we would go Palliative Care. I said No Bisposy...has to be cancer. Only surgery I would let happen right now is to remove the tumor...what you do with it after is up to you...you can bounce it off of Toronto General for all I care. We need the tumor out! No Pallitive Care...flew out of my mouth. They all looked. Now the stampeed of reasons why, this was the way to go. Words flyin everywhere...just words...because I really didn't take one of the words in. My head was swirling...I came here for help and now they say it is done...NO WAY. We can't even say they talked for about 15 minutes, because when someone talks, someone has to listen...adn i was NOT listening....Surgeons, Ortho, Pain Managment (they wanted to start Morphine NOW) Chronic Pain Managment, Radiation Therapy, Oncology Dr and resident's all telling me... It is over. I could feel myself falling to the wayside...then piped up and said...you have me all so upset that I have to go for a smoke. I will be right back. I just got up and left. Got outside heading to my Pillar and guess who is pacing...and I mean pacing...MY Cigarette man...Hey Lady...Don't let those B******* do anything you don't want them too. I just looked butt hanging from my mouth...I looked at him and said you are right. Headed back into the hospital, thought oh wait need to give him cigarettes turned around gave him 2, butt still hanging from my mouth headed in through the doors, some one said...lady you can't smoke here...oh yes opened the door through my cigarette out and headed back to the floor. Got into the door of the room looked at everyone there...not knowing what I was going to say. Saw that look on everyone's face...she is going to comply. Voice shaking I asked..."Am I part of this team here?" All in unison said YES. I continued..."when this first happened and if you told me to run naked throught the streets of Toronto and hit my son on the head with a hammer each morning because this would help...I would have done it. I know now, some of my brians back...and as part of this team."..and Dr.G piped in "Mrs.V you have the most important part." I looked at him said "Thank you...because we are going to be changing roles...I am now the team leader...you are all fired... none of you are my Dr's any aways. So BYE!" Faces dropped...mouths open...Head Nurse said that is not nice...I looked at her...and said... "and do I look like I want to be nice? Get OUT...everyone. This meeting is over." Dr's slowly started to get up from there chairs, Dr.Grant said he thought I would be calling him soon. I said No I won't, except I want Justin's Port Needle out NOW too. I will wait this out during this Easter Weekend until MY Dr. comes back. That may be too late...OH WELL THEN...my problem not yours! Asked again for the Port Needle to come out and added "If you do not take it out, I will and where it lands after I take it out is NOT my fault" Our regular Nurse was in the room as well and Dr. G said take it out. head Nurse made some comment, I asked her to repeat it...then said...oh forget it...Just get the F*** out of this room. Now faces really dropped because I swear only when I am really mad! This is the first time this floor has heard me. Just at this time...Justin pipes in...''Now you guys got my mom really really mad...you better all get out of here!" I sarted to laugh...though all this, Justin makes me laugh. I took on the whole floor and Justin says go and everyone goes LOL Our regular Nurse stayed with us, she asked if I was O.K. I said no...could you stay with Justin only after the needle is out so I can go for a cigarette? This Nurse I liked and trusted. She would NOT do anything I said NO too. She said sure...took the needle out again for the 3rd time today, gave me a hug and said take you time...I'll take my break now so I'll be here for 1/2 hour. She also added...GOOD FOR YOU MRS.V. Do what you feel is best! Went outside...searching for my man...no where to be had...Sitting I started to wonder how did he even know we were back? We weren't suppose to be here for 3 more days. After the Easter weekend. Then S came by...asked what we were doing here? Told her and cried...she sat next to me on the pillar and we both smoked 2 more cigarettes. She asked if we were going to the House, said I didn't even call. No staying with Justin, in the Hosipital. Told her talk to her later. Went back upstairs...head Nurse followed me into Justin's room. Mrs.V since you are not going to follow Dr's orders then you and Justin have to give up the bed. I looked at her...said think so...well call the cops, because until YOU get me into the House this time...we are staying right here. So bye, and do not come into this room! She just looked said I've never seen you like this...well leave and you do not have to see me any further. Shortly after another Dr. came into the room. I just looked up. She said she was looking at Justin's past tests and that they showed the tumor was growing so this should not be a surprise to me. I told her...NO the results were positive and I have all the written reports as well. She then got defensive and said...I looked just a few minutes ago and saw...so I know what I am talking about. I went to get my reports and said...sorry you are wrong...look. She didn't even want to see what I had...told her she must be looking at someone's else and she took a fit. Telling me the Dr's here are very good they do what is right for the children. It is the parents they always have to fight with. I broke in saying well...when you make a mistake with chart information, thank god some parents fight back. "You listen here..." That is all I heard..."You listen here...I'm fighting for my son's life here. I'm not ready to give up and either is Justin, so from now on I take the leader role" So BYE... She said something else and I added don't you have other people to bother. She was livid. Again our poor regular Nurse was here again and she just backs up to the wall. Looks at me again...and says...good for you...expect more to come in to convince you otherwise. No way...I'm taking Justin for a walk. Put Justin into his wheel chair and walked and walked and walked. Every once in awhile Justin would say...Mom we going back yet...NO not yet. He sat in his Chair...I walked and walked. I found out later that I had gone really far. Ended up at the 'Hairy Krishna' place which is about 1/2 hour drive to the hospital. Really thought, when I realized what the building was, to maybe go and hide in there with Justin until our Primary Dr. came in. By the time we got back it was probably 11at night. Justin in his wheel chair, hospital garbs and blankets to keep him warm. Me... looking like I went through World War III. Knowing that there were new staff now for the night shift...I just wanted to be left alone! Hugs Butterflymom |
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Got through Friday night, with a call from our Primary Dr. He called from Boston. Asked what is going on? Told him the short version very short version and added waiting for you. Asked what he thought a MRI would do, and he replied that it would determine if the edges are ragged and it is indeed cancer. A quick check, easier than biopsy. A quick reply came from me...well that is all I wanted and NO they wanted to do biopsy to determine if it was indeed Justin's cancer coming back. SO...I said NO they pushed and I fired. So Dr.M I am waiting for you. They are all ready to give up. Told you our plans...Quality of Life...Thin line between Treatment and Research, Justin will tell us when it is time to quit (and he says fight and no-one is listening to him) and Quality of Death whatever that is. Sticking to my guns...and No-one can change it. I caught him off guard when I asked the MRI question, I guess he thought the Dr.'s wanted to do it. So got my point across again...I'm in charge now. Then added...oh by the way...we will NEVER be on another protocol. Have our problem now...so we can change treatment to suit Justin NOT just treat the type of cancer he has. Besides his protocol SUCKS! Dr. M asked if I was going to be O.K. told him yes...just tell those other ones to leave me alone. He added that he would be arriving on the Monday evening and would come to the hospital to see me. I said O.K. and we hung up. Then I cried again. Thank GOD I have a Dr. that listens. Heaven knows where we would be if we didn't. He actually gave me his parents phone number if I needed to talk to him. Stayed away from everyone on the floor. Justin and I were outside most of the time. Very little ground and sand in the city, but we found a tree with a circle cut out of the cement. We would go there and Justin would feed the ants. Needed ground, dirt, and sand...NOT cement. My Friend S knew how upset I was so we spent a lot of time together. Kimmy was excited because on Easter morning she was going to place Easter Eggs all over the play room on her floor for Justin to find. She was planning our Easter. Easter came and Justin found eggs in his bed in the hospital, slippers and then we went down to Kimmy. She was bubbling with excitment. We even decided that we would have dinner all together. Bring the food to Kim's room and all eat together. Hey what is Easter for other than to be with FAMILY! Our new extended family...there when we needed them. Total strangers one day...and part of our beating heart the next. Monday finely came. Dr.M came in about 6:30 straight form the plane like he said. He came in and closed our room door and I cried...I just broke down and cried...blubbering and spitting everything I could in a single breath. I felt like I could let go, because I TRUSTED THIS MAN! He just sat and listened. Then I added about the second Dr. coming in and telling me that Justin's tumours have been growing for months. He looked at me. Asked WHO? Told him and added I never want her part of our team again. If she would not even look at my test results, which would be the smae one's from the lab, then she really has a problem. He agreed and also added let me handle her. Forget her O.K? Then got into the Morphine deal. Why are they so fast at starting Morphine? We both know that Justin's type of pain is really NOT controlled by it. WHY when a test result comes back or a tumour shows it's face is the next step Morphine? ASK the child if he is in pain...don't assume. Discussed this for awhile and again told our Primary one day we will have to go there, BUT NOT NOW! He was great, talked for about 1 hour non stop then he checked Justin asked him if he can walk he said NO but it is coming. Asked him what he ment by that...he said Mom knows...probably by tomorrow that is just how it goes. He looked at me and I said Justin and I do exercises each day and he rolls his hips trying to get the tumour to move over a bit once he can get it over enough then he can walk again and it doesn't hurt. He just looked and said that is strange. Yes...but watch if Justin says tomorrow he means tomorrow. Dr. reassured me we were working together and that he would have to think more on on our next move. Tomorrow morning I will shedule the MRI and we will go from there. Early the next morning we were off to MRI, and as suspected YES Justin's cancer had returned and with a vengence. We knew this on Friday but now had to wait till Tuesday because people would NOT listen again. Primary came in later that afternoon to talk about our plans. O.K. we are going to do Radiation. Yes the other Dr.'s were talking about that too called over at Princess Margarets and wanted to start on Sat. But I said NO. Just to let you know it is all or nothing...Full radiation NOT Palliative Care. AND...we have chemo as well. wow...have to think about that...it may just be too much. for Justin to take. Let's get the Radiation set up. Radiation is not done at Sick Kids so we have to go to the hospital behind us. So over we went...have pictures done, they were getting things ready for his actual radiation. He got a Lion to hold while he would be having radiation. One of the things this time is that I could not be with him. Told him that since his birthday is coming and that he would be getting older that he would go in for the radiation on his own. Mom would talk to him through the window and a loudspeaker. We tried it a few times without the radiation so that Justin would know what was happening and that he was on his own for this treament. It would not take long but he had to lie perfectly still and NO I would not let them sedated. Said just explain try it and practice a bit more and all will be fine. Did all that then we were going to be talking to our new Radiation Dr. In we went, and he started to talk Palliative Care...NO we are going full swing here. No I have a sheet from Friday evening and it says...forget it ...it is OFF. I left took Justin and left. Didn't even get into our room and Dr.M our Primary was waiting...Mrs.V mistake...no we are going full. I said well I really do not have the energy to fight with Dr's anymore just the energy for my son...so when things aren't the way they are suppose to be then BYE! We both laughed and he said no he had the wrong sheet. Will you go back he his waiting for you. Yes we will. Back we went he was all appologetic and we continued on what will happen for how long and when it all starts. Stuff to look for after treatment. Tomorrow we start Radation and for 3 months. I am here for 3 months. NO breaks no going home! Can't even think right now. Just have to do. 3 MONTHS! In the back of my mind I knew that, but...reality again...3 MONTHS! If all goes well. Got back to Sick Kids, and Primary had left a message and said he would be back in the evening to dicuss more. As we got to the floor the Head Nurse said we would have to do this as out patients and I added well then get me into the Ronald McDonald House and we will leave. Until then we are staying right here. She looked said you call..I said NO YOU! and headed back to our room. Justin was moving around in his wheelchair like he had to go to the bathroom. I asked him, he said O.K. put him on the toilet and went to sit on the chair. Next thing I knew Justin was walking out of the bathroom...Did it MOM...I looked up and YES you did it again...not #2 but was walking again. I knew that some of the Dr's and Head Nurse that told me... all was done, and NO that Justin couldn't move the tumour around like we had explained were still on the floor, so I sent Justin out to ask a question. Well again the eyes said it all. I stood in the doorway, tears of course but so proud...and actually happy to beable to prove a point as well. LISTEN...Now the questions again..does it hurt? Let's see your tumour, when did you start walking again? Questions questions, I stood back watched my son repeat...I Just KNOW over and over again. 5 sh**** days and one good. Not bad... But...This Part wipes the bad days all away. Justin came back and wanted to go see Kim...so down we went, walking of course. Everyone we met were saying good for you Justin ...and he kept on walking to where we was going answering "I know!" I just followed. Primary came in and we talked again about chemo added as well. Asked whether we could think about removing the tumour but he had brought the actual MRI because he knew I would go there. He showed me how the tumour had wrapped itself right around the hip so to remove it we would have to take all the hip and part of the pelvic area on that side. Still with the fact that it had spread so it in all likely hood would return somewhere near the area again. This surgery would put Justin out of commission for about 1 year, and then he added for him probably 6 months..then added where is he? I said Playroom Camp Ooch is here, so he is having fun. We continued our talk, he said he was working on some kind of chemo treatment as well, just had to figure out what he can take physically to keep what he has now. Oh that is right he didn't know Justin was walking. Finished our talk then I said you better wave to him or something before you leave. Oh I will...I would never hear the end of it if I didin't. We laughed. To the play room we went, I stood back again, he looked in for the wheelchair and saw Justin jumping over some boxes. He looks at me...says what happened here? I laughed and said that is Justin. Justin saw him yelled hey Dr.M come and play. So in he went. He got on his hands and knees, and yes...I saw the tears building up in his eyes. Justin hugs his neck tells him he is having lots of fun and takes off again to jump over more boxes. Dr.M stood up, walked back to me standing in the hall looking through the window at them playing. He just looked at me, not blinking, and I said...SEE...Dr's Have to LISTEN!!! As the other Dr's that had given up hope for Justin stood by. He shook his head, asked what time is radiation tomorrow I said 10, he said see you after that before lunch. Said O.K. and decided it was time for a smoke again. When I got back from my ciagrette the head Nurse was waiting for me. She said we have a room at the House either tonight or tomorrow. I said we would go tonight. Went to the room Packed all the stuff up and got Justin his supper and headed to the House. House Manager was there waiting for us, gave us our key and I added that we will be here for at least 3 months. Justin starts Radiation tomorrow. The rest not sure yet, but will let you know. He just looked at me asked if I was O.K. I said NO and satrted to cry. Our House Manager is fantastic. He just knows what to do and when. He just looked at me, said we are here when ever you need us, and asked if I wanted to go for coffee away form the House. I said I had to unpack, he said...it'll wait for you, and he is right. But...Justin...well Alex the Wood Man is coming in now or he is probably there already. Went to see yes he was and his heler was there, so Justin was happy to have his 'Girlfirend to himslef" So off for coffe I went. Just a block away...but at least it was away! Thanks J really needed that away. "You is a smart Man LOL" Hugs Butterflymom |
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Time to call home and let everyone know what is happening. Tears and fear took completely over at this time, but realizing there is really nothing we can do. I was in Toronto for the next 3 months and the rest of the family are home. That was our life right now anyway. Justin's birthday was coming up soon and he wanted so badly to be home. We know that, that will not happen, so preparing for a party away. Justin just wanted to be OUT of the hospital...but we didn't know the schedule right now, so could promise anything. Next day went to see the Dr. after our first Radiation. Things went well and Justin was a pro. He just lied there holding his Lion and a few minutes later it was all done. This is the first hospital that said 10 and meant 10. They were fantastic. Took all the time in the world with Justin and made the experience which he had to do himself a very positive one. I stood outside the window talking to Justin and watching his every NON Move. LOL can't move! Back to the house we went, time to get things settled in. I just had enough for about a week and this time everything is out patients except for chemo which this afternoon we go and talk about, so didn't have enough clothes even for Justin. Went to the corner bargan shop and pick up some joggers and shirts. Nice to change once in awhile. I also got the same thing. Lots of clothes at home, but then we are NOT there. Got over to the Hospital early went to see Kim and she was doing good. We planned a walk after our meeting going through China town looking at all the things outside. Finally time came for our meeting and yes...we had to wait. Waited till 4:30 and finally had our meeting. Yes we are going to try the chemo as well. It may too much for Justin but we will try. So the schedule is now set. Radiation Monday to Friday, Chemo every Wednesday by injection and every second weekend admission to hospital for 3 days of continued chemo. Well that should take up some of our days. That evening Justin had an accident. He was so upset...Called to me and said "LOOK...Poo in my pants, how did this happen?" Hmmm...later again and again. Hmmmm...next morning made arrangements to see our Radiation Dr. Think that you have to move the radiation a bit...explained what was happening and he said lets wait another day. Same thing all day and night long. Gosh...convinced Justin to wear a pull up...not too happy with the fact ,but we blamed it on the radiaition. The 3rd day of Radiation found them changing the site slightly which helped the problem almost immediately. That fixed ,on we went with treatment. Wednesday saw us there early to access Port get chemo then take the needle out again. Made arrangements to go for our weekly blood tests so that added another day of running for us. The first weekend was going to be our 1st weekend fo chemo, so got things ready for that. AND...YES...Justin's birthday will be spent in the hospital. Oh well getting use to the treatment and disease dictating what we do where why and when, so will make the best of it. Everyone on the floor knew it was Justin's birthday so a cake was brought in, had a party right on the floor and he was happy for the whole day. Walking around with his I.V. pole like his best buddy and smiling at everyone...because he is 5. Kimmy was also waiting for Justin's party but it was bitter sweet. Our last party together, as Kim and Mom were finally going home. After 1 year and 2 months they are going home. 2 days...and they will be home. So tears of joy sadness and HOPE! all wrapped together. Happy that she is going, but knowing that we may never see each other again. Helped S pack things and box more stuff up to mail ahead. She was going to beable to get on the plane with Kim. Kim was being transfered to her hospital back out East. S and I really tried not to make eye contact with each other. We talked with our heads down. Just wanting NOT to burst into tears. We had become so close...helping each other through difficult time, just being there whenever. Oh life can be so cruel...yet so good, as Kim was going home! Justin had recieved plastic golf clubs for his birthday so between the hockey stick ,golf clubs and the best gift from his #3 brother a Toronto M'Leaf shirt...Justin was very happy. We found a hall on the floor that was not used very much and this became his hockey rink. I would sit on the window ledge and watch...he would play, then score I would cheer, every once in awhile people would walk by and Justin would say watch it is slippery because it is my arena. They would do the sippery thingy and then we would start all over again. A the end of the hall was a little bend...this was his change room. LOL he had everything all planned out. LOL when I think of it now...we spent many hours at that arena. Occassional he would bring someone to play there with him, but only if he had a hockey stick. Ended up many of the kids on the floor had sticks.LOL I think it was one of the volunteers that heard Justin one day saying too bad...you could come and play hockey with me in my arena...then the next thing we knew...plastic hockey sticks on the floor. Hey Life goes on and we do what ever it takes to make it the best life we can. Even kids in wheelchairs would come, to Justin's arena. Had meeting with Dr's there too...LOL A few times they even got involved into the games...actually it was NICE! Well I'm avoiding Monday Morning...Kim and S are leaving. I asked Justin if he want to say goodbye he said NO...because he was going to see Kimmy again. I just let that one pass. Too emotional to really deal with that. Went down stairs to see them off, tears could not contain themsleves but we promised to keep in touch. Kim looked frail but good and S was excited but again tossed. Emotions were really high...and it was as though I just wanted them to leave now. GO...can't take this. Taxi came in they got to go to the airport and final HUGS and Goodbyes. Then I went to my Pillar. Again...just when I needed him...my Man...there he stood, waiting in silence for me to get there. It was morning so not the time we usually met. This time when I saw him...I cried...you always KNOW when I need you. I said looking at him. He just smiled. Tears running down my face, I said..."YOU are my Guardian Angel here on EARTH!" Again he smiled but this time it covered his face. We sat next to each other...not talking but smoking ciggy butts and just exsisting. Think I will stop here...Need to be with my Guardian Angel for awhile. Hugs |
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Oh so alone...with hundreds of people all over. Desparately putting my MASK on my slippery tear streaming face, trying to go on. Stopping my mind from going to far into the future...just wanting to get through today. Found Justin sitting in his bed...talking to his 'Hockey Buddy'. Are you here for a check up? No was the answer my cancer is back...NO... my not another one. Just at that time Hockey Buddy's Dad came in...yes...we are just waiting for a bed. Test came back and cancer is back. I just looked at him...said HOPE...never let go of the HOPE...Hugged him and we both just sat in silence and watched the two boys interact, catching glimpses of each other, and once again wondering...NOW WHAT? Now what...we fight some more. That is all we can do. With each step forward it seems we get 2 feet back...but you know what...time to just be once again. Hockey Buddy's Mom was coming soon so when she arrived I went to talk to her. Tears streaming down her face now...talked about just doing what we can...and not letting the fear and confusion take over. Between the hugs and tears we decided to have supper together once the boys had theirs and we would put them in the same room for supper. Justin was going to be done his Chemo and flushes late that night so I packed things up to go back to the HOUSE. Had supper with Mom and we talked. Actually she was telling me about their religion. They were East Indian for something like that. She told me of alternative stuff they were doing and how when "Hockey Buddy" was out of the Hospital they were traveling to the States to find treatment as well. I told her I was at the HOUSE and that Justin's cancer had also returned so we were here for 3 months for treatment. Explained what we were doing and she said maybe tomorrow you could talk to Dad as he has a meeting in the afternoon with the Dr's to see what the next step for them was as well. Agreed to come back giving them my number in our room. Justin finished everything about 11:30 p.m. We had the option of staying but with all that had gone on this day...I wanted to get back to the HOUSE. Just to be still in our room while Justin slept. So back we went. Justin was very tired so it didn't take much for him to be in dream land. I just sat next to the window...now letting my mind wonder...again back to "NOW WHAT?" If only the answers would come...answers that to this day remain a mistery. Didn't sleep much that night, so when the morning came...I had my regular headache. Take another tylenol and just get through. Had our Radiation appointment and Justin talked Hockey stuff with everyone. He always was in a good mood regardless what was going on. He talked to everyone that looked in his direction, in fact...we were heading back from the hospital to the other hospital when he saw a man sleeping on the streets..."HEY...You having a snoozy?" Gosh...Justin don't talk to him I relpied very quickly, as I rushed past. Justin just looked back at me said nothing but had the look Oh O.K. Got to the hospital and talked with Dad. I explained all that we were doing, just a s a guide. He was very thnakful that I shared what we were doing. He added anything right now...we need to find something and soon. Tears were welling in his eyes and he was beginning to feel very uncomfortable so we ended the conversation at that point. Justin and I headed back to the House only after he went to GYM. Next few days were much the same...talked to S on the phone she would call to let us know how Kimmy was doing. She was really glad to be home, but missed us all. Asked me if I met the other Kim form down there I said no, is she at the HOUSE? Yes but she is doing not too well so the parents are probably at the hospital. I told her I would be keeping an eye out for them. That night that family came in...looking very tired and exhausted. Came in like we all did at the beginning. Lost confused and scared out of our wits. I introduced myself said S had told me you were here and we sat on the balcony for a talk. Mom was shaking...I asked if she was cold she said NO...just my nerves. Dad was trying desperately to keep a stiff upper lip but it was shaking as bad as MOM. Then came another boy and grandma...they too had all come up to be with eachother. I asked how Kim was doing...and MOM broke down. That was it for everyone...tears flying..I was crying because they were crying other famileis came out...they too started crying...we were a great group...sitting on the balcony crying. Then came Justin...Hey...you guys are in my arena...do you want to see me play Hockey? We all started to laugh...Yes this was Justin's arena and he played hockey here every chance he got. He had his make believe dressing room and believe me you went through all the gestures like you were dressing or taking a shower...even washed your arm pits or he told you you would stink. Kim's Dad said sure and so did Kim's brother. The rest of us laughed as they gently passed Justint eh puck and he let it rip like no ones business. NAH hockey is tough...NO gentle shots here.Soon another father joined in used cardboard as his stick, one had a broom and another his foot. Justin told everyone that Alex the WoodMan was coming tomorrow so he was going to ask him to make mini sticks for the next week so everyone can have a stick. Everyone thought that was a great idea...not knowing Justin to well. The next day...Justin waited for Alex the WoodMan...Hey Alex can you make some mini sticks...the Dad's want to play hockey with me. O.K. Justin next week. He ran to everyone as they came in for the rest of the night and anyone he missed the night before he got the next day. Next week we can make our hockey sticks. They were thinking he was kidding...but the following week the palyroom was packed...thank goodness Alex made lots of sticks because you had everyone and their parents there making hockey sticks to play on the balcony. Now you all have to realize the balcony is NOT too big, and this is the only place you can smoke. So we re-arranged seating so 1/2 was for smokers and 1/2 was for hockey games. The amusing thing was watching all these people pretend to shower, change, intermissions pep talks and the works...I think this was a great therapy Session for everyone. The lady I met who had 2 children with cancer came in with her MOM. She didn't smoke but her Mom did so out came Mom for a smoke. Justin was out there as usual playing hockey...he looks at the Mom and says what is your name? The lady looked and said my grandchildren call me Gramma Vivian...Oh was Justin's respose nothing more. We had a smoke together Justin took off to the play room so I just sat longer outside. Tried talking to Gramma Vivian but little was being said. In came some more families...I introduced by saying this is so and so and this is Gramma Vivian...the Lady repsonded...I'm not Gramma Vivian, just as Justin came back in..."Oh yes you are..you told me that!" We all just laughed and from that day on Gramma Vivian was. Gramma Vivian was always cleaning up out on the balcony...when someone would come out she would compalin that no one else was cleaning their messes outside. Justin popped our again like his usual self and said while Gramma Vivian was cleaning..."Hey Gramma Vivian Thanks for cleaning my arena." Well the look in her eyes...and that was it for her complaints...she wasn't cleaning after us anymore...she was busy keeping Justin's arena clean for all the games. LOL Poor Gramma Vivian. We became very close after that and spent many hours just talking. Well time for Chemo in hospital again so we got ready to go to the Hospital. In we went, treatment went well and Monday morning Justin said early in the morning..."Kimmy Died!" I said What? He repeated...Kimmy died!" I just looked at him asked him what he was talking about, then he went back to sleep. It was only 3:30 in the morning, but now I could not slepp so went out to the Pillar. Putting Justin's comment in the back of my mind, I just sat. Should beable to go home about 9. yes home...as the Ronald McDonald House was home now for us. 9 got here and we headed back to the house. Got in called home to tell them we were back at the house, oldest son said 2nd son wanted to talk to me...I said later after 6 when it was cheaper he said NO mom NOW! He came on the phone and said Kimberly died this morning...her Mom has been trying to get you. I stood there dumb founded...Said... hang up... I have to go. Chocking back my tears and numbness, Justin looked at me as we went to our room and said..."See I told you Kimmy died!" I aksed him what that meant...he answered I was not going to see Kimmy again for a long time...but he was!" Couldn't go there. I just put things in the room, had to wait until after 6 to call S and headed for the kitchecn. Couldn't think...didn't want to be alone...but didn't want to talk. The House Manger saw me and asked if S had got ahold of me...I said NO but I know. Tears welling but House Manager knowing I had to just go. Got in the kitchen...saw other friends who came to me right away...yes I know...Please don't talk...can't go there. Judy was there...She is such a great Friend. Justin came in and said "hey Judy...got's some Tea for Me?" Judy would make Justin Tea in the morning and Coffee at night. Now...it had 1/8 tea or coffee and full of warm milk. This was there thing...and MOM had No say. Right now that is just what I wanted...to say nothing. After some time...more people coming in that also knew Kimmy and S came in, some knowing others not. We just sat. Doing what we had to but looking for the chair to sit. Finally it got very quiet in the kitchen and Justin said to Judy..."Did you know that Kimmy Died?" Yes she said everyone is very sad..."WHY" he pipped in "She is happy now, and you know what Judy...Justin is going to die too!" Wow Judy's face dropped and answered Oh NO Justin...that would make Judy really really sad" He looked at her with her BIG ICE BLUE EYES and waiting for awhile said..."OH you would miss Justin right?" Yes she said...I said nothing...just listening to their conversation. "Yey...my MOM would cry and cry!" then he took off. I just looked at Judy and started to cry...She cried as well and asked why is he saying that? Told her what had happened early in the morning just as the kitchen phone rang...It was for me...S...oh my GOD how are you...I am heart sick. 2 weeks to the day of going home. We talked for awhile, told her I wish I was there for her...Both cried and then Justin came back in...as if he knew it was S he said in his loud voice..."Hey let me talk to Kimmy's MOM!" I tried to shoo him away...no knowing what he might say.but as loud as he is...S heard him and wanted to talk as well. I kinda held my breath...worrying about what he would say. BUT...he quickly said..."S don't be sad...Kimmy is happy now, and she loves you still!" Handed me the phone and took off. Hmmmm told S I was back...she was sobbing on the other end...and said those two always had such a close bond. Didn't think it was the time to tell her about Justin in the early morning, but she added that Kim had passed very peacfully at 3:25 this morning. My heart thumped...Justin woke up at that time and at 3:30 told me Kimmy had died. Oh boy...need to go again and have another cigarette. I guess my face changed, Judy made me a coffee so when S and I hung up I could have one. Explained to Judy what had happened as the second Kim's mother and father came in. Asked if they heard...they said yes...but they did not tell Kim as they didn't want to upset her. She jsut got out of the hsopital now and was doing well. I told them that Justin may tell her so maybe they better talk to her before she heard it from someone else. Decided NO they felt it was best NOT to say anything. Their chose, so I just said a quick prayer asking that Justin NOT say anything to the people who do not know! That night was glad to get to our room. I needed to let go...justin fell asleep and I sat next to the window again. Cring, wondering what next...wondering why we were doing all this, wondering if I was heading in the same direction. All this for what???? Still playing on my mind. is it really worth all this pain and suffereing for everyone? Just as I thought my head was going to explord I heard Justin in his sleep laughing and giggling....Just what I needed to change my thoughts...then he said..."Kimmy you look so good now...no more booboos and no tubes. You are running, can you run fast like me? I just sat...even the tears didn't come. Next few days were spent much in a blurr...doing what we have to Justin enjoying life. Wednesday came and it was Radiation first then Chemo push. So on the way for Chemo..elevator packed...Justin yells in his BIG Voice..."Mom not going to died right now K!" I answered right away...because Justin is not the child you can put off. O.K. Justin that is good. People on the elevator just looked at me...then Justin. A little boy bald, blue eyes and he is telling his Mother he is not going to die right now...I was glad to get off the elevator, but then we were on the 8th floor and everyone else would get off before us except for those who were going to the same floor. I got a lot of weird looks, but hey...what can I say! Justin was eager to see Judy and told her the same thing. She told him he made her very happy and thought maybe an extra tea would be good right now. Justin was all full eyed and added I like Pop Corn too. Justin would never ask for anything...but his hints were pretty suttle...LOL that is it for today...my shoulders are aching from reliving this time...a time that I just wanted to keep still but know that it will be the last time my shoulders ache for this reason. Thank You! |
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Sore shoulders or not...it is a snowy day here, and not going to do much outside today, so write I will. The next week was much the same, but at the end of the week Radiation Dr. said he was thinking of doing some tests. Not expecting too much right now, but just to see. MRI is what he is going to ask for. We had a visit with our Primary Dr. today so I told him about the possible MRI. Then comes...who is going to pay for what? You...I said...no, it has to be Princess Margaret as they are requesting the test. Oh let me get this fixed up...I'll be back in 1 hour. Left with Justin went back to Princess Margaret and looked for the Dr. there. Finally found him...told him just to get things straight...you are going to order the test at Sick Kids and then this hospital will pay. OH...just a minute...NO minutes...You ask for it you pay...Just getting it straight so we can get it done now...not another month from now. Wow...hmmm O.K. settled then, I'll go and tell our Primary No problem...Oh O.K. Well that was easy don't give them time to think...just do it. Back we went Justin was laughing all the way...saying "Gee Mom you didn't even let the man talk!" Better that way Justin sometimes...just got to do what we need to do NOW! Saw our Primary and yes set up the test. These 'boomboom tests now last about 2 hours for us, so like them in the morning as early as possible or latest in the day. That way Justin falls asleep in the test and all is well. Primary gave me the request form and I went to book so I could get the time that is best for us. Getting good at this now...just suggesting good times. We were getting right into the swing of things at the HOUSE. Feeling very comfortable with everything. This weekend the boys and Dad were coming for a visit. Since we cannot go home...then they come to us when they can. Justin was very excited and was of course telling everyone our business. LOL Another excuse for him to talk I guess...not that he needed any excuse. LOL It was Wednesday and it was a double day as we called it. Radiation in the morning and Chemo Push at night. Justin was at the front entrance of the HOUSE with his plastic golf clubs playing when one of the fundraising staff came in. Well hello there Justin...where are you off to so early. Radiation...Oh...do you like golf? Yep...Would you like to golf? Yep I do...no would you like to come to a golf tournament today? Yes I do...hey Mom come on we are going golfing. Wait wait...D told me about a golf tournament that was raising funds for the House and was wondering if Justin and I could go with him. Brings reality to the funraiser. What time...7 sounds good. Meet you right here at 7. Justin was so excited...he was taking his plastic clubs to the golf course. On the way to the radiation, I was thinking oh gosh this might be too much for him, forgot for that split second that he was also getting Chemo too. Justin said NO problem Run Mom don't want to miss my Golf. Well I'm not running but O.K. we would try it and see what happens. Got to Radiation about 9:30 so had a 1/2 hour wait. Justin saw his nurse there and said..."hey could you let me go now...I have to golf today!" Nurse said let me see what I can do...Next thnig I knew...in we were and heading to the Sick Kids for Chemo before 10. Hmmm maybe I should let Justin do the bookings form now on. Got to clinic and Justin ran to the lab...right in the door Connie Pick Lady...could you do me now I have to go golfing...Geesh...Justin wait your turn...I tried to say when he sat his butt on the chair and handed her his finger...tell them to hurry up. I just stood back...this may be the fastest Wednesday we have ever spent. Had to wait 1 hour for the lab tests to come back and say whether his blood was high enough for Chemo. It came in after Justin asking the Ward Clerk about 50 times if it was back, then he ran into the room for his Port Access. "K, you got's to do me...I gots to golf...can't wait here!" I was laughing just watching him run from room to room, and believe me getting exactly what he wanted...One Nurse said that there were lots of other kids ahead of him... he just turned to another and said..."Well you do me...I can't stay here today!" Believe it or not, and anyone who has a child with cancer and has to go for Chemo pushes knows, that your day is spent at the hospital waiting your turn. Well we were back at the house by NOON! Justin saw D and said lets go...He looked at me and said is he done? I said yes... he pushed himself through everything. Going to let him take over, they seem to listen to him. D was going around 1 and then was coming back for us, so if we wanted to go then we could. Got to the golf course and Justin was just beaming. He wanted a cart, he wanted to golf with HIS clubs and Mom had to stay behind at the Club House and wait. Besides I had no clubs so him and D would go and golf. I helped the ladies who were putting on the tournament for the house set up for dinner and awards that night. Justin was gone having a great time. I sat with one of the organizers and we chatted once everything was done. I was introduced to a number of people, can't really remember names now, but they were all part of this fundraiser. A few hours went by and D and Justin came back in, D looked exhausted and Justin was beeming and FULL of energy. Mom I golfed...I'm good, ask D and I can drive the cart too. I won...I think I won. D looked at me and said I think he has to go to the bathroom. He told me that but now he is busy running around checking out all the awards. Justin do you need to go to the bathroom? Yep...lets go fast...maybe we can drive around somemore D just wait for me. Off we went came back and D was having a coffee and checking out what was to happen tonight. He asked if Justin could give out some of the awards tonight, I said sure...and Justin said yep I can! Some of the golfers were coming in and Justin was running up to each of them as though they were his long lost buddies. D explained that Justin meet every golfer...They have some extra game thingys they do...like closest to the hole and some other ones. I won MOM is all I heard. Not sure what he was talking about but knowing too that he was too excited to explain anything anyway. We all had a great supper, then the awards...Justin got to give the awards out and he was so excited...It was time for the first place trophies and awards. The captain or what ever you call them in golf, got up with his team but before leaving the stage said he would like to say a few words if he may. Justin was standing there. The trophies were almost as big as him so D was helping giving out these. The captain said he has never been in a golf tournament where he has had so much fun. He looked at Justin and said..."you bring life to the game I love." Now came the story. This team had won over all but this man hit the ball for the closest game, and just as it was going in for a hole in one and yes obviously the winner, Justin jumped from D arms and saved the ball. LOL Yes...Justin decided to be a goalie in the middle of the competition...The placed roared with laughter...I turned beat Red...and Justin SHONE...with the biggest smile. Looked over to me and said "Yeah Mom I saved it...he didn't score!" IyIyI! He saved the golf ball...can you picture it. The man then said...I have to give My trophie to the best ball saver in the world...and handed Justin the trophie...the place went wide. Justin beamed trying to raise the trophie over his head like the stanley cup winners. Like I said it was nearly his size, so poor D was trying to help and Justin saying "NO let me do it!" Gets it up there and walks around the whole place with the trophie over his head. I had tears running down my eyes. Poor D was trying to follow so the trophie didn't fall on his head. Justin was nearly running by now with his prize and everyone was standing and clapping. Oh what a night. By the end of the night it was 1 in the morning by the time we had packed everything up. Justin recieved small gifts from people, and he had this thing about business cards, so asked everyone for their business card. Mom's purse was full of cards. He was hugging everyone, and by the end of the night the house made $35,000.00. The different groups joined together to meet the 15,000.00 raised at the golf tournament and another group put in $5,000.00 to give to Justin's HOUSE! All in all a great night. Justin was asleep in the car before we even got out of the parking lot. D and I talked and laughed. It was a great night. Told D if there were anymore fundraising events Just let us know...I'm sure Justin would love to help out. He looked totally exhaused...you see he was not married and no children, so he got first handed the joys of kids. I think D was going to have a good sleep too. D carried Justin into our room, even though he woke up just wanted D to carry him. I think it was his way of getting the brother and Dad carries that he was use to. The bond between D and Justin was so strong from that time on. Justin would see D and yell HEY DAN THE MAN...and he would yell back Who let the Dogs out...and Justin would respond...Justin Justin. and they both would laugh. A bond that was needed...Justin needed that guy thing again, and Dan was the MAN to deliver. This was the beginning of our Fundraising for the House! |
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The next day came all too soon. We had our Radiation treatment and came back to the house. We decided we would just have a quiet day. Yeah right...Justin was full of himself and wanted to take his Trophy everwhere he went. We took it to Radiation, but they had seen him on T.V. I guess the T.V. crews were there so while he was golfing with his plastic clubs...they took his picture. So when we arrived at our appointment even the older people there for their treatment were calling out to him. Telling him he was a star. He JUST SHONE...Looked at me...and said "You always say that eh Mom?" Yes I do... We didn't stay long in our room, Justin was just to excited, so we decided to take a walk to the water front. It is a fair trek but...just the peace and quiet would be nice. It was a beautiful day, and when we got there Justin was treasure hunting. So came home with tons of Driftwood. Not sure what we were going to do with it, but had tons of small pieces. When we were returning again we saw someone sleeping on the side walk...In the loudest voice Justin had he Yells..."Hey Mom...Don't talk to him and don't look at him!" Oh brother...Yes Justin O.K. Hmmm guess I better be careful what I say to him...he'll come back with it again. LOL We got back to the House and as we were arriving we saw "Dan the Man" Hey guys how are you today. Just great and Justin showed him his treasures. Real nice Justin but I have a favor...you were such a Star last night, do you want to say Thanks to all the people that golfed yesterday? Sure...My Mom can do that! Lol You Justin NOT ME! The thought just flew through my mind...now I know why we had the driftwood. We would do thank yous with it and if we could add a picture to it. Hmmm good thing we picked up the treasures this morning. Together we made a thank you, and brought it upstairs for D to send. Mind you he was going to have to bring it. When we got there there was a man there that had seen Justin on the T.V. D said was going to call you , this gentleman is from ??? I forget ,but anyway he has tickets for you to go to the Blue Jay game. Yeppiii...Justin shouted, my brother and Dad are coming do they have tickets for them too...how many do you need? Hmmm 4 Me, my Mom, #5 brother and Dad. DONE...the tickets will be at the game go to booth whatever and pick them up. Justin was just buzzing...then turned and said..."K Mom you better make another Thank You!" LOL He keeps me busy. The game was Saturday and family were coming late Friday night. This will be great. Friday night was a special story night, and Justin was so excited for Story Teller "Pat" to get there. Pat's daughter worker at the house and of course Justin claimed her as one of his girlfriends too so Pat and Justin had already met. Justin loved Stories, so he was watching the time. Still had the little hand, big hand mixed up so every once in awhile would say look the hands are touching the numbers we need. Nope...the other way around. LOL Finally Story time...Justin was right in front sitting so patiently for the story. It was her first published story and it will be coming out in the new year. Justin sat so wrapped up with the story...Every once in a while he would say "PUSH HERE TO START!" One of the boys from the house started to act up, Justin turned to him and sternly said..."Hey you quiet we are watching the story." Watching he was...Pat had come all dressed up and with all the whooshes and glooshes...you were watching the story. Justin jumped up at the end and cried..."Just Push Here to Start!" This was part of the story, and everyone was given a Button with
Just Push Here To Start!" We still have that Button! Dad and #5 son came in just at the end. Actually arrived earlier but waited not to disturb the story. Justin was now excited to tell the story tell them we were going to the basball game and to tell them about golf. So much..."Come on W we gots to go see my trophy I won!" Saturday came and since it was an afternoon game we left the House early. Had to figure out the subway system. Got there and headed to the booth that we were instructed to go to. When we got there they looked up said you must be Justin. Yes it me, I'm going to baseball. Yes one moment please. We waited and another lady came to get us. Come on, you are going to meet some players...BIG SMILE and #5 son had just a big of a smile. Down we went, and out came Darryl Fletcher and Carlos DeGrata. Justin looked at them both, hmmm O.K. in uniform and looking like baseball players. Each of them gave Justin a ball from practice and signed it, Justin said "give my brother one...we have to share", so off they went to get another ball. LOL Then Carlos asked Justin if there was anything he wanted...Ummmm get me a home run K? Well I'll do my best, but cannot promise that. As they were leaving Carlos looked around and asked Justin where are you sitting???? Justin said the chairs LOL and then he laughed and said where are your tickets? I gave the tickets to him he left and came back with tickets right behind catchers mound. He told Justin to wave to him during warm ups. We got our seats...and Justin waved and yelled like a fool. People around were looking and smiling. Justin was saying there is my friend...hey friend!!!! They looked and thought to themselves yeah right, he is my friend too. Game went on, Blue Jays were losing badly and Justin fell asleep. Just in the last inning Justin woke up and it was time for Carlos to bat. He looked at me and said watch this...Just as he said it...Carlos hit the ball out of the park. Justin went wild...Carlos from third base to home...waved and waved to Justin as he yelled at the top of his lungs..."My Friend did it..he did it!" Now people all around are watching, Carlos touched home plate and yelled up...for you my Friend! Wow...now the tears again...it was great! Justin was just full of it now, and ready for another game. Unfortunately the next batter went out and the game ended 6-1 for the other team. Home we went with his treasures in hand. Everyone had a great time, and Justin was ready for the next adventure. Sunday came and family had to leave to go back home. We bid our goodbyes and went for a walk. We had written some letters to people letting them know what was happening, so went to mail them. It was across the street so decided we would walk after that. I always take the wheel chair when we go for walks, just in case. We mailed our stuff and started walking up the street when Justin says, loud as ever..."Hey Mom look...all you have to do is put your hand in the cars and peoples gives you money." Oh no...right in the middle of a drug transaction...I laughed...what could I do...No Justin that is NOT a good idea...But MOM...Hey...don't talk... as we walked by all the people involved watching us. It really was funny. Just forgot it and went our way. Got by some Mall and some man was painting portraits. He asked if he could paint Justin. I said sure but I have NO money to give you. It is O.K. I just want to paint his picture. Justin sat there, the guy painted and he asked Justin what colour shirt do you want? I want TorontoM'Leaf Shirt. So after about 1/2 hour the portrait was done and the man gave it to us. For you Justin. He said thanks and then said you going to be here tomroorw? The man answered yes, he said OH and that was it. That night Justin and I made another Thank you. The House had printed some pictures of Justin golfing so we were going to use that for the Portrait mans thankyou. Justin had asked because he wanted to do something now for him. Talking to House Manager and he said give me the portrait and I'll shrink it, print it out and you use that. Next afternoon after our appointments we headed back to look for the Man. Yes the man was there and Justin gave him the Thank you...He had tears in his eyes...thank you so much...I will put it on my table so every day I will see you. Got back to the House to find out that Travel Lodge had adopted a room. There was going to be press, and media coverage tomorrow morning at 7 could we attend? Sure, so we headed back to the room to make another driftwood thank you. Told Justin we would have to go to bed early because we had to get up early. There are 28 rooms at the Ronald McDonald House, and people pay $20.00 to stay there. You have your own bathroom in your room, much like a hotel. Laundry facilties free of charge, they even supply the soap. Have a kitchen, playroom quiet room and games room. They even have a house cupboard in case famlies need food. All you would ever need. BUT...$20.00 a night for the rooms do not cover it, so they depend on fundraising to keep the cost low for all the families they service. I assumed that the Charity just covered the cost but NO...they help but it is up to the different houses to raise the money needed to keep the house open. This is one way they get money into the house, the room adoptions. Next morning came and there was a knock on our door, Justin ran to open it and there was Kris King...OH hello Justin said, not really knowing who he was. He looked at him and said Mom the man is here. Introductions were done, Justin was walking around Kris looking at him, You see Justin caught the Toronto Maple Leaf emblem on his shirt, so was looking to see just who this guy was. Kris had adopted a room at the House for years, and it was called the TreeHouse. It was decorated just like a tree house, and Justin loved that room. Finally Justin asked...you play hockey? Yes I do...for the TorontoM'Leafs? Yes I do...well that was it...Kris King was his BUDDY! He was here helping with the media and stuff for the adoption this morning. Justin was in his glory, he was with a TorontoM'Leaf. The adoption went well until they asked him on live air...even though we said Mom made the Thank You...Did you make this for me? NO...My MOM did! LOL Oh well...everyone laughed, and Justin followed Kris around. That afternoon was another publicity thing at the House. The Mayor had a fundraiser going on with a full size moose. Moose on the Loose in the city. The House got a Moose and the kids were going to paint it under the direction of an artist from the city. After some time the Moose will go to auctiona dn th monies go to the charities that painted the Moose. Justin was going with the other kids to start to paint this moose. We had a long day. Got back from Radiation and Chem just in time for the beginning of the painting. Justin was sitting in his wheelchair under th Moose and painting. He was covered in paint, more than the Moose but hey...he was having fun. Again Live T.V. The Mayor was talking to the media about the project and painting with his other hand. All of a sudden Justin yells out" Hey You...colour between the lines, you are going to wreck our MOOSE!" Oh brother...the mayors face turned red, I turned purple and hid behind another mother, and the T.V. zoomed into his face. Like I said he was covered in yellow paint, he looked up and said "Well you gots to be careful this is our MOOSE!" Oh what a day. This showed this clip about 5 times that day...with the caption..."Hey You...stay between the lines!" And this is where I stop today...right between the lines where I am suppose to be! Hugs Butterflymom |
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