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Friday, June 18, 2004 8:38 AM CDT To all of you who visit this page, I would like to let you know that you are always in my prayers.
It is three months and two days since Michelle passed. It only seems like yesterday that she was just a little girl.
It sometimes makes me wonder how on earth we can be gifted with the love of a child, then lose that precious gift.
There come good days and bad days, yet each feels uncomplete because one of us is missing from our home.
Sadness can become overwhelming. Happiness a fleeting emotion tinged with sorrow and guilt.
Sometimes even bitterness arises at a world that teaches us to have faith.
People say Faith makes you strong, will carry you through. Yet it doesn't always feel like that is possible.
Acceptance is even worse because there is no choice as to what has to be accepted.
Watching my other children get on with their lives. living with their loss is more difficult than I had imagined.
The abiltiy to reach out to them harder still.
How do parents live with loss anyway, and yet manage to function as normal for their other children. This I find really hard.
I pray to God everyday to help me, and yet still I cant find the answers or the motivation I need to do the things I know need to be done.
God bless to all who walk our road
Saturday, May 22, 2004 2:11 PM CDT It is now coming up to two months since Michelle was buried.
Every so often, since she passed, I find yet another revelation that allows me to make this statement to all of those who are dealing with cancer through their children.
Often times, we as parents wonder what we should tell our children of their illness. We worry that too much information may frighten them, make them give up on the hope and determination that helps carry them through their journey. We wonder at how much they will be able to understand, and how this may affect them. After all, they are our babies, and our role is always to protect them from what we see as potentially harmful to their physical and emotional well being.
Some times, our children as us questions, and we answer to the best of our abilities, though this can be difficult for us, as some of the answers will upset our kids, and in this, upset us too.
The reason I write on this subject came to me as I was going through Michelle's belongings last night. For the most part I was more amazed at just how much stuff this little lady had accumulated. Marvelled at how she had kept school excersise books from all of her secondary school years. Books, teddies, trinkets that I had bought her from as far back as I can remember, all kept in perfect condition.
And then, as I was looking throught these books, I came across one that Michelle had borrowed from the school library back in October, during the couple of weeks she managed to attend school after relapse. The book was about death and dying. It was quite detailed in matters such as embalming, autopsy, burial and cremation. I was really quite disturbed by this, as it triggered off worries of what Michelle must have been secretly going through. But most of all, It made me wonder at my own role in trying to help Michelle come to terms with what was going on. Although we did speak of certain issues relating to her passing, I now wonder if Michelle felt uneasy to ask me direct questions about what would happen. I also think that Michelle was probably looking for answers as to actually dying.
I guess there are no right or wrong answers to such questions should they arise. But the one thing that I have learned from this, albeit too late for me, but perhaps it may be of help for others travelling such a painful road, That is, no matter what your child asks you. Do your best to be as honest as possible. Where you genuinely dont know an answer, tell your child that you will help them look up the information and go through it with them.
One of the most important things that bonds between child and parent is trust. It is vital that this trust be kept in tact. Never underestimate your child's intelligence or curiosity. If they cant find their answers from you, or their nursing staff, they will take it upon themselves to look it up at school, whether in the library, or on the internet.
The key point I really need to emphasise through all of this is that your child will want answers to their worries, and fears. If they do go find the answers alone, chances are, their discoveries will be more disturbing, if there is no-one there to help them understand their findings.
I do hope that this makes sense to those who come across our page. Most of all, I hope it may be of some help.
God Bless to all who walk our road
Love
Jacqui
Sunday, May 16, 2004 4:05 PM CDT This is wierd!
I logged on to my pc, and thought I should update on our page, let you guys know how everything is going here. I looked at the time, and thought ' how strange'. It is exactly 2 months to the hour that Michelle passed.
What makes it wierd to me is that not ten minutes ago, I was cleaning up in the garden.
We had such a beautiful day. The sun was shining, sky blue, a perfect day. My sister, Marguerita called about 2, and Danielle called about 6, we sat out side, had a b.b.q Marcella and her friend played about in the pool ( not a great pool, just a blow up one) My friend Roni, who Michelle once told, that should she have had a choice, Roni would be her real aunt. Juelz stopped for a while, but had to leave to go rehearse for the gigs he has on Tuesday and Wednesday. As you can imagine, plenty of clearing up to do. leading me back to the point, I had no clue of the time until I had logged in, and saw the time display!
I have been home for a week from my holiday with the family.
Initially, It was hard getting back into any sort of anything. Every day when I wake, the first thing I do, is go say hi to Michelle, daft really, as I dont need to go to the cemetary to do that, yet for some reason it feels right. I know in time, this will change, as life goes on.
I have decided to do a little voluntary work with substance and alcohol abusers, then, in September, go to university to do my social work diploma. This has been something that I have always wanted to do, but never had the chance, so I figured now is as good a time as any.
I have also decided that I should start training to run in next years Women's 10K, If I should manage to do this, and complete the run I should be able to raise money for research into Neuroblastoma.
I once told Michelle that she needn't worry about me, when she has gone, because I have too much to do to keep her memory alive. I know that in what sometimes seems a crazy world to me, I must be doing something right as Michelle's rose bush is budding its first bloom. I hope she is happy that her little patch in our garden is blooming for her.
God Bless to all who walk our road
Love
Jacqui
Friday, April 30, 2004 8:57 AM CDT Thankyou so much to those of you who rembered Michelle on her sixteenth birthday, and for those of you who continue to visit our page.
I am on holiday with my family as I write today. It is now one month and 14 days since Michelle passed, yet the pain still feels like it was only yesterday. For the first few days of this holiday, things seemed to be going okay. I guess that was because I have never really had a moment to myself. But now I feel no different than I did before we left home. This is normal I suppose, after all Michelle was such a large part of my life, double so since her diagnosis. It is probably only natural that it will take some time before I will begin to feel any sense of normality in my emotional world.
My family and I went out to celebrate Michelle's sixteenth birthday. This was really nice, as it was a chance, and a first at that, that each shared memories of times spent with Michelle. I hope she was watching over us, sharing with us those precious moments.
I still see my girl's face when I close my eyes. Sometimes I see her as if she had never been sick, her smile and her sparkling eyes, and I give thanks for those visions, telling myself that is how she must look now, cancer free, pain free. But sometimes I see her smile as it was toward the end of her life and now I realise that the sadness I saw in her eyes was probably the sorrow of knowing that her time was soon to come, and a reflection of the pain she must have seen in my own eyes.
I wonder how other parents in my position cope with thier loss, how they manage to get by each day, because I know I am not alone in this world of grief. I hate having the knowledge that there are those who are to follow this path, and the helplesness of having no control nor ability to change the fate of thier loved ones. The only hope left is through prayer, that our precious children are guided safely to Our Lord, and prayer that the healing of broken hearts left behind doesn't take too long.
I so want to begin visiting other pages regularly, and although I pray for all of the families I have met through this site, I still find it hard to find the strength to visit and let each know that I still care and keep them in my prayers. This I still find too difficult though, because each story leads me back to my own, and all I end up doing is staring at the screen through my tears.
Know that I do care, and each has a place in my heart.
love
Jacqui
God bless to all who walk our road
x
Friday, April 16, 2004 4:08 PM CDT It is one month today since Michelle went home. I miss her so very much. Life is so different without her here with us.
I can see her smiling face in my mind as I write, and wonder if it because she is acknowledging my thoughts. I hope so, because she will be able to feel my love too.
I talk to her every day.
Michelle once told me that if when she passes, I want to talk with her I should and she will be there. God bless her for how she thought of everything that would be of comfort to me when she had gone.
Sometimes, I still sit in awe of her ability to cope with everything that she had to and yet her focus was on helping me cope, not just with what we went through whilst she was still alive, but also after she had passed.
I am in awe of just how much of a special person I had the privallige of being mother to.
I know there will be those who have walked my road that know only too well that sense of being gifted with a child with those same qualities that I speak of about Michelle.
I am now 12 days away from Michelle's 16th birthday. I we, her family will celebrate her day as though she was still here, because in spirit she will be, so we should still share with her day.
God bless to all who walk our road
love
Jacqui
Sunday, March 28, 2004 3:49 AM CST
MICHELLE'S DAY
Michelle told me How she wanted her day.
She said "Mum, when I die, I know that people will cry.
It's only natural. But I want people to celebrate my life.
I dont want people to wear black to my funeral. I want people to dress in happy clothes. My life has been so happy and full of love. That is how I want people to remember me".
Michelle was buried on Friday 26 March. Liverpool 8 celebrated Michelle's life in a way that she will be so proud of. I will never get over just how many people came to say good bye. Our church was not big enough to contain all of Michelles friends, and those who in one way or another whose life she had touched.
Julian was so strong, he, his two cousin, brother, uncle, father carried Michelle. I know she will be so proud of him and the others, but especially Julian. The closeness they shared was incredible. I know she knows that in her final days, Julian never left her side.
Danielle, mys sweet girl has almost been like a mum to me.
She has been a tower of strenght. I see her through new eyes. She has grown to be a truely amazing woman in her own rights. Her inner strenght knows no boundaries
Marcella, After all that she has endured in her own life before joining us has been so hard for her, yet as she says good bye to Michelle, her love and strength for our family can only serve to make us love her even more.
I miss Michelle so much, but I dont wish her still her with us, as that would mean she would still be in pain. I know she is with me always though in my thoughts and in my heart.
I consider my self to be a very lucky woman. I have had the privilage of Michelle as my daughter. She gave me enough love to last me several lifetimes.
People used to say to me "jacqui, I dont know how you cope" they never knew just how easy My girl made it for me to look after her. They dont know just how easy she made it for me to carry out her final wishes. They do know Michelle's strength, pride, courage and warmth.
I thank the Lord Almighty, in his blessing me with an Angel whose love will shower me until we meet again.
God bless My Michelle and keep her warm
God bless to all who walk our road
Love
Jacqui
Wednesday, March 17, 2004 2:27 PM CST Thankyou so much for your kind words, prayers and well wishes.
It is with both deep pain and a sense of happiness that I write and tell you Michelle found her way to paradise 10.17pm 16 March 2004.
Her passing was as peaceful as we have all prayed and wished for, with almost a smile on her face.
I told Michelle that she will now be able to see just how many people really love her and wish her peace and serenity.
Here in Liverpool there are a lot of broken hearts saying goodbye to Michelle in there own special way.
I know Michelle is watching over me now, and I know that the strength and courage that she showed us can be possible, she has passed on to me in the greatest lesson of love. It is through this that Our family will cherish and celebrate her life.
Good night sweet Michelle
you are now with our sweet Lord, with your sister and your nanny.
God bless to all who walk our road
Jacqui
Sunday, March 14, 2004 2:38 PM CST Pardon me if my entry is a little muddled, but I really dont know where to begin. Everything has been so crazy here over the last 10 days, so much so, that I have been living in a kind of daze.
It is almost as if none of this is real, and at some point I will wake up and everything will be the way I always thought it would be, with no fear, no sadness and no cancer.
I wish I was typing about some kind of miracle, some kind of turnaround in all of this, but we all know that it is o so rare for wishes to come true.
My Michelle is losing her fight, deterioration in her condition has been so rapid, especially over the last three days, it has been frightening to watch with the knowledge that this is it and there is no turning back.
Michelle is now totally sedated, as pain had risen to a hieght that it imposible for her not to be sedated without being in total pain. This is not good for her, or any of us around, since the only time that Michelle's eyes open is thruogh pain, and even then she does not see us.
I have been told that any family or those who are close, should be informed of how serious things are, so that they can be around her.
I apologise for my erratic very late entries through these last few months. The next entry will probably to let you know that Michelle is finally at peace, and so I ask that you pray for Michelle that she can go to the Lord, with as little discomfort as possible.
God bless to all who walk our road
Love
Jacqui
Tuesday, February 24, 2004 3:34 PM CST I know it has been some time since my last journal entry, I guess I should really update more often to keep those who follow our journey updated. I suppose I have been a little selfish, in that I have tried to keep myself occupied in other areas to try and keep my mind off stuff, not that this is an easy thing to do. I am sure that those who are, or who have been through this fight know that only too well.
It really has been an up and down sort of time here with Michelle. There was a point where everything seemed as though it was coming to an end for her as a result of infection, even doctors and nurses thought it was necessary to prepare me for such an event.
Gradually, Michelle became stronger, although not to how she was before the infection. A course of steroids was introduced as a means of reducing swelling of tumors in her neck. these steroids seem to have held things well, although Michelle's appetite has now become ferocious to the extent where I am finding myself having to borrow money at the end of each week just to keep up with her demands.
This would seem to be a good sign. But it really isn't that good at all. For Michelle has now reached a massive 11 and a half stone in weight, yet the only place you can see this wieght increase is in her over distended tummy, and her swollen face. Her legs are still skin and bone. It is quite saddening to see that her once very pretty face is now so swollen it looks distorted in shape.
The other thing that makes it saddening to watch is that whilst pain relief doses are so high, poor Michelle sleeps all of the time, waking about 9 or 10 times a day to eat as much as she can manage, only to go back to sleep.
Our macmillan nurses are talking now of increasing medications to keep Michelle more sedated, as Michelle still has bad dreams creeping through and is also experiencing new pain in her tummy.
Michelle also experiences terrific mood swings in that one minute she can be laughing as what, even she doesnt know, the next she is as tearful as anything. That has been put down to the combination of steroids and anti depressant drugs.
The rest of us are doing okay for the most part. Except it has now become to feel for all of us that we are all part of a waiting game, I know that seems cold, but it is like we are all just sitting and waiting for the inevitable to happen.
God Bless to all who walk our road
Love
Jacqui
Thursday, February 5, 2004 8:32 AM CST I cannot believe how long it has been since my last post. Who knows where my head has been at ;-)
Firstly I would like to share with everyone that my son Julian turned 18 on Tuesday 03 February, Happy birthday son.
He also had a gig on the same day. It was really sweet, because as they were introduced onto the stage, the compare let everyone know it was Juelz birthday, and with that everyone sang the happy birthday song. The gig went very well as usual :-)
There has been little change in Michelle. On saying that, all she does now is sleep, only waking for food or drinks.
It is sad to see how much she has changed. There is no more conversation from her. Even smiles are getting rare now. All we have now is to take each day as it comes, hoping that Michelle remains comfortable and that her dreams are good.
Our G.P. visited today whilst the macmillan nurses were here. He wanted to discuss with me the options of how Michelle should be treated should she develop another chest infection. He says we can either choose to treat it, or just to let it take natural progression. I feel that it would probably be better to allow it to take it's course. I no longer see the necessity to keep treating symptoms and there is to be no cure. Inevitably, one infection is only going to lead to another. In the scheme of things I dont think that it is fair for Michelle to have to keep going through all of that feeling wretched over and over. The last infection left Michelle really weak, and to be honest, she has never quite recovered from that.
I know there will be those who may think my attitude to all of this quite cruel, that I should fight for all stops to be pulled to keep Michelle going until it is no longer possible to do so. I would probably think that myself if this were happening to someone I knew, and not my own child.
But she is my child, and I feel that it would be even more cruel to keep dragging her through all of this for my sake.
God bless to all who walk our road
Love
Jacqui
Thursday, January 15, 2004 10:17 AM CST my site
Before I continue, I just wanted to add the link above. I will do it properly later. The link will take you to an amazing young man's site. His name is Wesley. Not only is his site really cool, but he is an awesome young man. He is one year and one month from transplant and finally back to school. Wesley does his own site and I am sure that once you go check him, you will be glad that you found this new friend...He is a beautiful inspiration to parents and kids alike.
Since my last journal entry nothing much has changed here.
Michelle's diamorphine was raised again yesterday, as were her fentanol patches and her sevredol tablets. This was because new pain was breaking through in her lower back. At first we were not sure whether or not this was due to positional pain, as she does not move very much these days. However, this was not the case in that it is probably related to pressure from tumor growth.
There has been very little improvement in appetite since Michelle's chest infection, although antibiotics seem to have helped the symptoms of that.
I still write letters to her in our letter book, and, she has tried to reply to one of them. From what I could understand, Michelle wrote:
To Mum my best friend
From Michelle
I love you infinity times infinity times all of the planets in the universe. I am sorry that you have to do so much for me. I dont want you to overdo it because you have to look after your self.
Thank you for being the best mum in the world. When I get a bit better, I want to make it up to you and make you breakfast in bed, and massage your feet the way we used to do for each other. I am tired now. write back soon
love
Michelle
I dont know how long it took for her to write this, and I could tell by the writing that it probably took so much of her energy to do it. I felt a little guilty, because I haven't picked up that book for over a week now. After reading her letter I looked back through the book. It is filled with love, poems, dreams, fears and hope. It will be one of the things between Michelle and I that I will cherish forever.
Some one said to me in one of our guestbook entries that Michelle, no matter how medication may keep her sleeping. She is always aware of my talking to her and my touch and will know how much I love her. That person was right, for the letter Michelle wrote tells me so. The feeling that gives me is that no matter how awful this time is, no matter how many times I sit talking to her thinking that she is sleeping neither that nor the kisses are in vane.
I thank God that in his mercy, he allows My Michelle to still feel all of the love I have to give her no matter what. I also thank God that in his wisdom, he sent Michelle to me. I accept that it is not forever, but most of all I accept that he gave me a precious gift in her that would teach me so much about life and all it has to give through love. I know that for Michelle her role in this life has been acomplished. I know this because her giving to others as she has done through her young years will have made an impact on thier lives. Her positivity will shine in the memories that her friends will hold on to when she leaves us. That makes it all worth while.
Thank you for keeping up with us and signing our guestbook. I believe that all the prayers for Michelle are working. They may not make her better. But they do give strength and that helps to make this journey easier.
God Bless to all who walk our road
Love
Jacqui
Thursday, January 8, 2004 9:30 AM CST Thankyou so much for checking in on us and leaving your kind comments in our guest book. It is really comforting to know that we are prayed for and thought of by so many people.
I am happy to say that Michelle is in no pain and is comfortable.
Our macmillan nurses took some time with me yesterday to explain what I should expect with Michelle. It seems that the chest infection has and continues to take it's toll on her. She still hasn't eaten, and is sleeping even more.
The nurses also brought information leaflets for me explaining how to go about registering a death, stuff on how to arrange a funeral, and a booklet explaining the build up to and the death of a child in Michelle's position, it also has numbers for support and so on.
It was weird really though, Julian had got home from work around 3.30am that morning, and didn't go to bed. Instead he sat in the sitting room with me. At first we sat in silence just listening to some c.d's he had brought from his room. Then he began talking about all kinds of stuff, which eventually lead to him talking about how he feels regards Michelle, he sobbed for almost 2 hours as he talked of his thoughts. As if his instincts had told him to prepare for her leaving us. He says he wants us to move from this house when it is all over because he feels he wont be able to cope going day to day her without Michelle. I think we will move.
I will sign of for now
God bless to all who walk our road
Love
Jacqui
Monday, December 29, 2003 5:07 PM CST Before I write my journal entry, I would like to wish every one a very happy New Year and hope that a very good christmas was had by all.
I would like to thank everyone for continuing with thier prayers for my Michelle God knows, we need them right now.
I would be very grateful if some one could give me the link to the site where I originally found out about caring bridge, I would be very grateful. I am not sure if the name of the site is care to share, or something on those lines. I know Cheryl uses this site, so a little help girl, once u have figured what the hell I am talking about :-)
I do not really have too much to say about anything really in this entry.
Christmas was very quite in our house as Michelle is sedated so much that she sleeps for the best part of the day. Things are gradually getting worse as each day her morphine is increased to combat pain breakthrough.
I guess at least if she is sleeping for the most part though, she is fairly comfortable.
Julian stays out as much as possible and has taken on another night job. As for Marcella, she tends to spend more and more time in her room. I don't blame her really, as it is quite upsetting sometimes when Michelle is awake, since she has difficulty in making herself understood.
Today I had a bit of a scare, as Michelle had a temp of 38.80. I called the nurses to confirm with me whether it was ok to give her paracetamol to bring the temp down, they agreed that it would b ok, and that I should keep an eye on it, to make sure it stays down. If things are no better tomorrow, I shall call the g.p as it is possible that She may have a bit of a virus.
I myself, have reached the point whereby as exhausted as I feel, I hate sleep. My biggest fear is that Michelle passes in the night and I am sleeping. We both sleep in the same bed, and for the most part, I wake at her every move, but sometimes she can be awake for a while and I am unaware. I also tend to spend a lot of time just watching her breathing patterns, God knows why I do that, because I only end up scaring myself when it alters.
Sometimes I get angry, as my family really have not been there at all through all of this, and although I have almost pleaded with them to spend some time with Michelle, It angers me now that even if they did bother, it is too late, as Michelle would be oblivious to there presence. They really should have given her their time so that she feels loved and wanted, not just by me.
It is strange that I am even writing about that, because in the past almost 3 years, they haven't been there, so I should have known it would be like this.
Maybe it is just a sign of the times, change in attitudes, I dont know, but in my understanding, I could never stand by and let one of my family members go through what Michelle has been through and not be there for them.
Maybe I just expect too much, who knows.
I will finish for now.
God's strength to all who walk our road
Sunday, December 21, 2003 9:55 AM CST Thankyou for all of the entries in our guestbook. I am overwhelmed by the amount of people who are leaving well wishes and praying for my Michelle.
Last night, Saturday 20 December, my brother Derek held a benefit night to raise money for Michelle. Unfortunately, Michelle and I could not attend. However, the feedback I have recieved from friends and wellwishers is amazing. £1700.00 was raised, which is to be matched pound for pound by the Halifax Building Society, who are to be printing an article about Neuroblastoma in thier monthly newsletter.
Well Done Derek!
Julian and the rest of Fade2 performed, also Marcella in her dance team, and solo, singing one of Michelle's favourite Brandy songs. Well done to both of them, as I know it must have been an ordeal to carry out these performances at such an emotional time in their young lives.
For Michelle, there has been little change, other than the raising of pain relief every couple of days. For the most part she is sleeping with the help of sedatives and morphine. At least her pain is finally under control, allowing her comfort.
Friday, December 12, 2003 12:09 AM CST I can't remember when I last updated our page, I do know it has been a little while though. Thankyou so very much to all who have passed by and left a message on our guestbook, your prayers and kind words are of comfort in this ever saddening time.
Michelle is not getting any better, if anything she is getting rapidly worse. Every other day pain relief has to be increased. Every other day, Michelle finds another lump.
It is difficult to comfort Michelle anymore. For the most part she is sedated as she had reached the point that even on closing her eyes to blink she was having terrors. During the night she has bad dreams, and, although I sleep with her, sometimes when she wakes in the night, she is even frightened of me.
During her waking hours the sedation is so heavy, she is for the most part incoherent. Almost like people who suffer with senality. She forgets quickly who has visited her, or plans that she has tried to make.
This has all happened so fast. I mean, I knew it was going to happen at some point or another. It is just so hard to comprehend that for the best part of almost six months, Michelle remained strong and fought everyday to maintain normality. Yet within two days, the strenght and the fight have been drained from her. It has left her weak and feeble, needing my help for almost every action. When she is focused she does nothing but apologise for what she sees as herself being a burden.
If I had to do all of this for Michelle for the rest of my life, it would never be a burden, I tell her this all of the time. I remind her that we made a deal at the begining of all of this, that we would be strong for each other, and no matter how tuff it got She can always count on me to be there for her. Somehow though, in the scheme of things Michelle finds this in it's self difficult. I guess the top and bottom of it is not just about strength and courage, or the comforting words from those who care, for Michelle, it is coming to terms with losing a grip on her pride and dignity. No matter what I say, I can't compensate for that.
She says she is not the same Michelle anymore, that her sense of humor is fading fast. The things she used to find funny she finds stupid. her patience and tolerance are also wearing thin. That hurts so much as these were some of Michelle's strongest qualities.
Her clothes are no longer fitting her, they hang off her where they are not supposed to, yet we can't get her better fitting clothes because the tumors have swelled her tummy so much it doesn't allow for resizing of clothes.
I don't know how long Michelle can hold out like this. I just pray that God gives her the strength to get as much time as is physically possible for her.
I will try and update soon
love Jacqui
God bless to all who walk our road
Friday, December 5, 2003 12:26 AM CST I realise now what is meant by 'silent scream'.
We probably had one of the worst nights ever here. Michelle slept til five a.m. I had not long got to bed after updating here when I was awoken by her clambering over me in a mad panic. I sat up asking her what was wrong. No answer. I followed heras she went into the Kitchen, she was crying and telling me how sorry she was as it dawned on me what had happened with her. Diorreah had woken her and it was too late for her to make it to her comode. I helped her change, as she fought me so she could get back to the comode. This continued til about 8.15.a.m.
Her face as she looked on me was so pitiful. At fifteen years, almost sixteen she must have felt like her dignity had been stripped away from her. She told me that she had been dreaming that she was in the hospital again, and that she had gone to the toilet in the cubicle in her room, as she had finished the doctor came in shouting at her telling her that she had been a very naughty little girl and that they were going to have to put her to sleep for being so bad. It was the doctor giving her the needle that woke her and not the fact that she had made a mess. In the time between me taking the pan to clean it, she had to use one of the buckets she has for when she goes sick, that was how we alternated.
Finally it subsided, and so Michelle had 250mgs of morphine pills to help with tummy pain, half a nonizan to stop her from getting nauseous, and also to help her back to sleep.
She slept til about 1p.m God knows, she must of needed it. Whislt she slept, I cleaned around the house. My sitting room is no longer our cosy family room, it looks more like a hospital room, with the bed, comode, recievers etc. As I cleaned around her, I watched her sleeping, inside my head I was screaming. Momentarily, I cursed at our God for making Michelle's life so hard for her, for allowing her to endure the pain she constantly feels.
Our macmillan nurse called to increase the diamorphine and to add the diazipan, along with antisickness. This has made Michelle quite drowsy and even more tearful than she was before.
We are supposed to be preparing for christmas. Sometimes I hate the world. I want them to stop and do something for our children who are suffering, and wont be able to enjoy christmas, but who am I kidding. life goes on
I should go now
God bless to all who walk our road.
My prayers are for all of our children and their families who are suffering, fearing the return of such suffering, especially for those who have lost their precious babies having to carry on at this time of the year
Thursday, December 4, 2003 10:08 PM CST It is 13 after 4 am here in the U.K. Michelle is fast asleep, and so I have taken this chance to creep upstairs to check on our page and to update. Before I continue I would just like to say thankyou so very much for your entries to our Journal. I know you all know how much we really need your prayers right now.
Early hours Tuesday of this week, I called out our macmillan nurse, as Michelle was getting worse no matter what I had given her. Phred called out and fitted a small needle to Michelles tummy so that she can have constant pain relief pumped into her, she can also boost this herself. This has helped a little, but has needed to be increased each day.
A Hospital bed was delivered on Wednesday so that Michelle can sleep downstairs, and be comfortable during the day too.
Now we both sleep downstairs in this bed as Michelle is back to fighting sleep again.
Tomorrow, Friday, Phred will be calling to increase Michelle's pain relief and also add a drug similar to diazipan. Hopefully this will calm Michelle down, as she keeps breaking down crying. There is so much that she wants to do, and it is hurting her so much that she cannot do these things. All of her options are closing in on her one by one.
It is strange sleeping with Michelle now. I never thought I would say something like that but it is true. She used to sleep so peacefully, quietly, her only moves were to snuggle in to me. Now she is jumpy, cries, and her stomach is constantly making noises, to the point were it wakes me up. Then I lie there wondering why her stomach makes so much noise, what must she be dreaming of to make her cry, and how she must feel that damned pain even as she sleeps to make her so jumpy, kind of like spasms.
She tells me of her dreams, It is like we are having two sides of the same nightmare.
My heart breaks for her as I watch her struggling to fight sleep, talking about anything n everything, nodding off in the end as she sits talking. It hurts even more to watch her try and keep up with were she is up to in what she talks about, the tremor in her voice when she reflects on certain things. Holding her is not enough because me and her both no that kisses can't make it better anymore and hugs don't make it all go away.
yet still she continues to hold on to as much independance as possible, still continues to make plans. My head says that I should offer to help her in her plans to christmas shop, cards she needs to post, because everytime she plans to do something, something else goes wrong that stops her from getting done what she plans, leaving her depressed.
My heart has no remedy to offer without upsetting her even more.
My prayers for all who walk our road.
I pray that Kaitlyn is getting through her stem cell treatment well, and that side affects dont hold her for too long
I pray that Katia is doing well also, as I haven't been able to check on her for a little while now
God bless
Jacqui
Monday, December 1, 2003 9:01 PM CST Hello to all of you who come by and check on us. I am sorry it has been such a long time since my last update.
I am sorry to say that we have not really had much of a good time here over the last fortnight. Things just seem to be getting progressively worse as each day goes by.
I really haven't had the heart in coming to our site, not even to read the messages. I don't mean that to sound rude or anything like that. I just don't seem to have had no concentration for the net and the time it takes to get through stuff. Hopefully this should be remedied in a week or so as we are getting broadband.
I really hate typing this bit, because it is no longer just mine and the nurses conversation, it is out there larger than life, and it hurts so much inside because now everything is becoming to real in this awful fight of ours.
Michelle has been very poorly over the last couple of weeks, firstly with a virus, and now with excruciating pain.
The poor thing cannot even stand without help from myself.
We went to clinic today for review of what is going on, especially since Michelle had a real bad weekend. Our macmillan nurse checked Michelle's tummy, and then went to get a consultant to come check it over. It turned out that she wasn't sure that what she was feeling was all tumor or a combination of tumor and fluid. The consultant confirmed that it was mainly tumor.
We discussed raising pain relief, and if that didn't work then another pain relief should be introduced. The nurse asked me if I still wished to look after Michelle at home, I told her that was one thing that wouldn't change. My baby belongs at home with me until such a time as it is no longer possible.
The nurse told me that although our consultant has ordered the next round of chemo, there is no way Michelle can have it as she is so poorly it would not be fair to add to it with the sickness that the chemo will cause. She said that she cannot predict, but I should prepare that this is it now for Michelle. I guess I knew this already. Watching the pain increase, her tummy becoming more distended, her appitite, sleeping patterns etc.
The nurse asked me what I thought about Michelle having another course of the chemo. I told her I dont want Michelle to have it anymore, it is obviously not doing what we hoped it would do, as the disease is progressing too rapidly. It is better for Michelle to be made as comfortable as we can possibly get her. Filling her little body with more poison is only going to weaken her and make her even more sick. I really dont think it is fair on her to go through this ontop of what is already going on.
gotta go for now as Shell has woken and needs me.
I promise to update soon
God bless all who walk our road
love
Jacqui
Tuesday, November 18, 2003 5:43 PM CST We have had relatively good weekend and start to this week.
I am hoping that it stays like this.
Michelle has been in school both yesterday and today, this is really good for her, as she gets out of the house, and for her, is doing something worthwhile.
We had to raise her pain relief on Saturday, so she now has 150mg slow release patches, and 80mg morphinex2 a day. The nurses also prescribed a new pain killer for her that aims straight to tummy pain, although it still hasn't quite taken the pain away. Michelle feels a little better though.
The nausea and vommiting haves stopped so that also is a good thing.
It Was my eldest daughter's 21st birthday yesterday, so Michelle, Marcella and I went and spent the evening with her. We took with us, a new flat screen t.v, a large birthday cake, complete with candles, a bottle of champagne, and other edibles. All in all we had a nice evening.
I would have liked to have done more for Danielle, but since I am not working now, finances dont stretch too far.
She seemed quite pleased anyway, I think that was the main thing.
Today has been rather uneventful, kids at school, Julian at work, n me wondering around the house like a spare part.
A local guy who runs a sports club that my girls usually go to, needed a letter typing up as he wants to start up a new project for the kids in our area, but he needs to apply for funding to help get it off the ground. He asked me if there was anything that I could contribute. Initially, I didn't think I could, but then I thought perhaps I could deal with the administrative side of things, as I could do this from home. He said that if everything goes according to plan, that there should be no problem for me to work from home. Fingers crossed that everything works out eh!
Well I will sign off for now
God bless to all who walk our road
love
Jacqui
Tuesday, November 11, 2003 1:00 PM CST Well, I hope every one had a good bonfire night, on Wednesday November 5!
We watched an amazing fireworks display at the Albert Dock. The really cool thing about it was that we didn't need to leave home to see it.
Thursday, we went to see Julian singing. Local artists were performing at our local methodist centre, the evening was provided for all, young and old, and went very well.
Friday was kinda quiet, we didn't really do to much, stayed at home, watched some movies. It was the final night for Michelle to take her temezolamide, so she has now completed her first course.
Saturday, Michelle decided that she wanted to dye her hair red, it is like a kind of saffron color, and it really goes well with her own hair color and her complexion. I did it at home for her, using a streaking kit. Even though I say it my self, it has turned out beautifully, and Michelle is thrilled with it, now I have to do Marcella's so that she doesn't feel left out!
Sunday was very quiet for me for a change. Julian was out with his girlfriend(am still trying to get used to the fact that julian actually has a girlfriend). Marcella went out to visit with friends, and Michelle went to spend the day with her dad. Something she hasn't done for ages.
It is weird now that they are all in their teens. Sundays used to be spent at home, kids flopped in front of the tv, me cooking dinner, n, making sure everything was ready for school the next day, evenings spent doing Michelle's hair. Now, outside of Michelle being sick, I am redundant almost to their needs.
I guess we don't stop to think when they are little that they will grow up so fast, and those clinging little hands will sooner than we wish, be reaching for things further afield.
Monday, Michelle had an check up at the hospital, she had bloods taken, so that it can be determined whether or not she is aneamic. Also to check on her platelets n stuff. The nurse had a feel of Michelle's tummy, and asked her some questions about what she could feel going on. Michelle described feelings of movement in her stomach that was painful, and left her feeling uncomfortable, as though something is pressing on the right part of her ribs. The nurse said that what Michelle was describing was accurate to what had been found on ultrasound scans.
The nurse said that she would book for some further scans to be carried out within the next few weeks so that they could see whether or not Michelle will have another course of the temezolamide.
This morning, Michelle was awake at 6a.m and was vomitting from then util around 2p.m. I called the nurse to let them know what had been happening. And to let them know that Michelle had taken it upon herself to have the anti-sickness drug that she was using whilst on the chemo. The nurse wasn't too pleased about that I think, but for Michelle, I guess she was just looking for a way to stop going sick and feeling so nausious. As a result, Michelle has eaten nothing at all today, just had drinks throughout so as to avoid dehydration.
I myself, am beginning to feel a little depressed about the whole situation. There is nothing I can do for Michelle to make her feel better physically or mentally. Anything that we do now, for the moment is good, but when it is over, Michelle is miserable again. I can't blame her of course, and I don't think I would really want to know absolutely all of the thoughts that must whirl around in her head everyday.
I am beginning to feel the strain of having to deal with all of this all day everyday. I am losing sight of what it is like to have time out with my friends, spare hour or two in the day with nobody's company but my own, or even to sleep by myself. I have lost sight of any kind of privacy in my life anymore.
I know that I am supposed to be able to put all of that on hold for a while, Because Michelle is my utmost priority. I know that I probably sound selfish for even thinking about all of this, let alone writing about it, but the fact is, this is all what I am feeling, and it wont go away.
My sister passed in today, she spent about half an hour with me. During this time, she asked me what is the plan for christmas this year, I looked at her, and wanted to say, christmas is on hold this year. All I managed to say was that I really cannot plan that far ahead right now, she actually asked me why. So, again, I explained what the nurse at the hospital had said to me. Explaining that there may be a possibility that Michelle might not actually get any more treatment hence, not being able to plan that far ahead.
I better sign out now.
God bless to all who walk our road.
love
jacqui
Wednesday, November 5, 2003 6:55 PM CST It is 00.58am here in the Uk, and Michelle has finally gone to sleep.
We have had not such a good few days. As I said in previous journal entry, Michelle was to start temezolamide on Monday of this week, which she did.
The first night, within 20 minutes of taking it, she was real sick, but by morning she was fine and went to school.
The following night, she had it, and seemed to be doing fine, after an hour, she had some toast and drinking chocolate, and then went to bed, going straight to sleep.
I sat and watched her for about an hour, before going to bed my self. Within 10 minutes of this, she was vomitting violently, this did not stop til about 9am. It was really horrible to see her going through this.
For the most part of the day Michelle slept, and in waking, ate very little.
The Macmillan nurse came out to check on Michelle, as I thought I had better call her because it didn't seem right that Michelle was so sick. The nurse told me to change one of the anti-sickness tablets for a stronger one that should help ease the nausea.
I told her that Michelle has noticed that the lumps in her neck have swollen again, and she can feel one of them pressing in her throat, making it painful for her to swallow. I was told that I should give Michelle three steroid talbets at lunch time every day that she is on the chemo, in the hope that it will ease what is going on in her neck, plus it has anti-sickness properties.
The only thing is, that all of the drugs she is taking induce tiredness, that added to the fact that she was up all night being sick, is probably why she has slept the best part of 24 hours.
I am now sat here, the time being 01.o9, almost two hours since she had the chemo. Am scared of going to sleep just yet incase she goes sick again. I am just praying that all of the tablets she has had today prevent a re-run of last night.
The nurse will come and check on us in the morning to see how things have been, and to see whether or not any amendments need to be made to Michelle's medicines.
My main concern right now, is that Michelle can tolorate this treatment, as I so do not want this to be the last attempt at trying to control things.
Well I will sign out for now
God bless to all who walk our road
Love
Jacqui
Sunday, November 2, 2003 8:30 PM CST It has been a few days since my last update I know, but I really haven't had the time nor the energy to get here.
We had a real busy week and a hectic weekend, for the most part it has been real good.
We spent a lot of time shopping for our halloween party. Over here it is not common to have a party for halloween, most kids go trick or treating, a thing that has gotten popular over the past 10 or so years, before that most people just did duckapple n stuff like that.
I thought it would be nice for us to throw a party for Michelle, Marcella and their friends because it will be something they will always remember :)
Earlier in the week, we went to watch my son performing with his group, Fade 2, once again they were amazing. I am so proud of Julez, his confidence has grown with each performance making him sound even better. His style of singing is a mix between Tyreese and Usher, the girls go crazy when he sings. My girls really enjoyed the night.
Michelle starts temezolamide tomorrow evening. She will have this for 5 days, if she tolorates it well, then she will go on to have further courses, if she doesn't then treatment will stop, so fingers crossed that she can manage it.
Our macmillan nurse told me that we need to meet up without Michelle, so we can discuss, the practical side of palliative care at home, as she feels it is time that they prepare me for what lies ahead now, this is because the disease is spreading more aggressively than was initially thought.
Michelle's pain is still not under control, even though the strength of the patches has been doubled since she started using them. She is still having to take morphine pills throughout the day to ease breakthrough pain, and is still nausious for the most part.
School is back tomorrow, after half-term break, and I dont see Michelle going back, although she speaks of going back, and wants to, I really dont think she is up to it as she seems to spend most of the days drifting in and out of sleep. This is due to the amount of pain relief she is taking plus not sleeping too good during the nights.
Well I will finish now, because I really need to go check up on Katia and see how she is doing, hopefully I will be able to keep my eyes open long enough to go check on some of the other kids too
Thanx for keeping up with us
God bless to all who walk our road
Jacqui
Monday, October 27, 2003 2:38 PM CST Hi to all visiting us here
A great big thankyou to those of you who have contacted me, passing on information about the temezolamide, it has been really helpful to me. Thank you for your time and consideration, as I know it isn't easy finding stuff on the subject in relation to neuroblastoma!
I would also like to say that lately, it has been difficult for me to visit you guys on your pages as time and me dont work well together these days, but you are all in my thoughts and in my prayers, and I am so glad when I read guestbook entries as it is really heartwarming to know that people care about what is happening with my Michelle, so again thanx for being there for us over these past couple of months.
There is not a lot for me to say right now, as there has been no improvement with Michelle, things have pretty much been the same as they were on my last journal entry.
Michelle is still uncomfortable with her pain since no matter what she has, nothing seems to ease it.
She is sleeping a lot more during the days now, and awake more during the night. It is wierd, because she fights sleep at night for fear of bad dreams, and ends up sleeping most of the day away, and so doesnt escape them anyway.
Her appitite is still very bad. I find this worrying for several reasons:
And now I will go about trying to explain them hopefully without losing the plot or you as you try to make sense of this ;)
As you may remember in my previous entries, I had talked about us having to make a decision about whether or not we were going to use the temezolamide.
Well, After struggling on the net trying to find info, and gleaning through e-mails that people have sent to me, I was still no better off in that after wieghing up the pros and cons, no matter what we do, Michelle will still be sick, will still be eating poorly, and still fighting to keep a balance in her life so that all of this doesnt seem like it is taking over her completely.
I decided on Saturday morning to ask Michelle's advice. I told her that I was not really having much joy in my search for info, and suggested to her that perhaps I should stop trying to find out stuff, maybe we should just try it any way. Michelle said that we should try it as we dont have any other options outside of giving up. And so we decided to let the macmillan nurse know that we agree to trying out the drug.
My reasoning behind this was simple. I figured that through out the time I had been spending searching for answers, Michelle, being aware of this, must have been worried sick that I was considering the option of letting her die. When this thought dawned on me I felt really bad, and tried to put my self in her shoes, asking myself, what would I really want my mum to do for me, my only answer was that I would want my mum to try what ever was necessary to keep me here with my family for as long as possible. I thought how scary it must have been for Michelle knowing that there was a possibility that if I were to delve too deeply into finding out whatever I could, that I might tell her that we should opt for no treatment. It must be so hard for her to be living with the knowledge that she has already about what is going on inside her. Maybe one of the few comforts that she has is based on the possiblity that the temezolamide might buy her more time, and that within that time, her consultant might be able to come up with a better alternative.
Only time will tell I guess.
I had recieved an e-mail from a lady who has gone to a lot of trouble to get me some really good information on the drug, and I now have a better understanding of what side affects we should expect, and although it isn't the greatest news, it really is no worse that what Michelle has already had to deal with. I reckon that Michelle is probably already preparing her self to have to deal with more sickness and stuff, If she can cope with this and is prepared to take the chance, then I have to go with that.
It is time for me to go and cook for the family now, I really haven't the energy to do it, but what the hell, home cooking beats takeaway anyday :)
Bye for now
jacqui
God bless all who walk our road
Thursday, October 23, 2003 5:25 PM CDT Well, it is ll:26pm here and Michelle has gone to bed.
We have had a tough couple of days. This is because Michelle has been vomiting a lot, especially through the night which, ironically is when pain seems to be worse. She says that she is scared to eat now, because she knows she will only go sick afterwards. She is only managing a bite here and a bite there, even the smell of food is making her sick.
Today the macmillan nurse visited, I told her how Michelle has been doing, and how we have been tryng to get her to eat, it is even hard now to get her to take her pain relief as everything that goes down comes back up again. We have been sleeping downstairs a lot too. I cannot let Michelle go to school, as much as she wants to, through fear of her either going sick, or passing out with lack of food.
I have tried bribing, if she eats a little often, then she can go to school, if she doesn't then she cant go. that is now failing.
The nurse says that Michelle's pain relief patches should be increased and that we should change them every 48 hrs instead of every 72 hrs. Maybe that will help.
We have between now and Monday to decide whether we want to try the alternative treatment, it is called TEMEZOLAMIDE.
they cannot give us much information on this drug, apart from the fact that it can cause nausea and vomiting, bone marrow suppression and fatigue. And so, if anyone has any info on this it would be very very much appreciated.
The nurse says we have two choices, to try the temezolamide, or opt for no treatment, that I should look for any more info on the drug, and Shell and I should discuss our options. It is all well and good doing the research. How the hell am I supposed to balance over quality of life, and possible side affects and then relate this to my Michelle. How the hell do I discuss these alternatives with her! My heart says, go with the temezolamide, but my soul says let her go. God forgive me, but how much suffering should a child endure before the inevitable happens. She has lost 11 kilos in weight already, and her hair is begining to fall out again. Her liver and kidneys are displaced, causing more pain and her color has changed so drastically, from brown skinned to yellow almost.
A choice like this makes me wish I had never been born. Time passes too fast. Before I know it will be Monday and I will have to have an answer. Michelle seems so fragile now, I am terrified of bringing the subject up again, but it has to be done, I just cant bear the thought of her thinking that I am giving up on her, and cant bring myself to making no decision for her, either.
Where is divine insperation when we really need it?
I know that i must sound like a pessemistic fool, but right now I see no room for optimism, as it bugs me..For the nurse to tell me that we can opt for an alternative, or no treatment, and that there is no wrong decisions, given the rapid progress of the desease, it is almost as if she was encouraging for the latter option. I know that Michelle feels that too because she has totally withdrawn since the nurse was here.
If anyone has any info on the above mentioned treatment, please do not hesitate to contact me on ladyslix@hotmail.com, or danielle66@btopenworld.com
I apologise for not doing my usual rounds on other sites, time is just not on my side right now.
please know that all are in my prayers
God bless to all who walk our road
jacqui
Tuesday, October 21, 2003 1:14 PM CDT I know it has been some time since my last update, to be honest, I didn't realise just how long it has been, as so much has been going on here.
These past two weeks have been kind of an upheaval for all in this house.
Michelle has been experiencing more and more pain. We have had her medications increased several times, until the nurses decided that they should be changed from the morphine slow release tablets to slow release patches, as it distresses Michelle having to take too many tablets.
Michelle also began to notice other lumps appearing in her neck, and also in her tummy.
We had to wait until she had finished the last course of etopiside, before she was to be reviewed by our consultant.
We had a really rough four days while Michelle adjusted from the tablets to the patches. To the point that me n Shell were sleeping downstairs, as it was causing her too much discomfort to move.
Today we went for Michelle's review. The consultant, on examining Michelle decided that we should go for an ultra sound scan to see exactly what was going on, as she could feel what Michelle had noticed, and was worried that it may be a problem with her liver.
We went for the scan, which took 20minutes, then they wanted another consultant to come and do the scan again before the report was made for our consultant.
During the scan, I could see what they could see, and watched them measure four masses in Michelles tummy.
On getting the results from the scan, the consultant suggested that we stop using the etopiside and use another type of chemo instead, one that acts in a different way ( I will update on the name of it later) Apparently this is only on trial here in the UK, and has only been used on four individuals in Italy. Normally it is used for brain tumors. I will research it later when Michelle is sleeping and update as to my findings.
Well gotta go now because Michelle needs me
Thanks so much to all who check on us
God bless to all who walk our road
jacqui
Tuesday, October 7, 2003 9:18 AM CDT Before I do my journal, I would like to share a prayer that I found in the chapel at Ayre hospital, when we were up in Scotland.
It was quite funny in a way, as I have never been inside a hospital chapel before, to be honest, I couldn't even tell you if there is one at the hospital that Michelle attends here in Liverpool.
On our first nights stay, I passed the chapel as I went to get some drinking choclolate for Shell and I. I looked in, and felt a strange sort of calming feeling, but carried on past in my hurry to get back up to the ward.
The following night, whilst Shell was sleeping, I went back down, this time going inside the chapel. It was only small, but very beautiful. On the main wall, behind the altar, there is a large stained glass, depicting Jesus, with lots of children all around him. Underneath Him, there is the verse, Suffer the little children. Reading this made me cry. I sat there for ages looking at this picture and verse, Thinking about everything that has happened In Michelle's life as I know it from 26 April, 2001. Thought of all the information that has been given by our consultant, all the information I have found through the internet and other sources. I realised a long time ago that it doesn't make sense praying for a miracle, since what is to be must be. I decided that it is better to pray for strenght and guidence through all of this, and God holds a special place for my Michelle to keep her safe, loved and comfortable until I meet her again.
On my way out, I noticed that there were several piles of leaflets on a shelf, so, me being me, went over to see what they were. One by one, I picked from each pile, on reading them, each one a different prayer. It was almost as if they were left specifically for me. I know they weren't really, and since they were in the hospital chapel, they would probably be relevant to all who felt the need to go in as I had. Never the less, I have kept them to read whenever I feel saddened.
Here is my favourite:
Lord of the evening
as the sun begins to set
and we prepare for rest
we draw aside from this days events
sometimes sure, sometimes unsure
what to say or how to make sense of what's gone before
In this thoughful time help us to know that you are close
that you understand our need and that you deeply wish to respond
Lord of the night
be present through our hours of darkness
let questions, anxious thoughts,
be enveloped in sleep
that through its mystery, restful strenght may be found
Compassionate God, may the knowledge of your love
be the touch of peace for all this night
and may we each know the nearness of your presence
Amen
I took about five of these prayers. The next day, I showed them to Michelle. She read them, was quite for a little, she then said to me that she would like for us to read them together each night before we go to bed.
On to our journal.
Michelle has had a really difficult week, however, things are back under control now, so much in fact, that she has returned to school :) :) :) :) :) Very, very very well done Michelle. She is in Marsella's class too, so she is really enjoying being back to school.
I have to say though, that right up until Sunday evening, I really did think that we would have to postpone school for a while.
Michelle had a week of taking 40mgs of etopiside morning and night. Throughout, she was constantly sick and could not keep food or liquid down for more than five minutes.
She also began experiencing bad pain, to the point where I would have to help her in and out of bed, or chair.
I ended up by the Thursday, asking our Macmillan nurse could the etopiside be lowered back to the original dose as it was making Michelle worse instead of better.
By Friday, the nurse got back to me saying that the consultant felt that Michelle should stay on the higher dose as her platelets where good, we should just try alternative anti sickness pills. Sunday morning was the last straw. Michelles morphine slow release had been raised to 80mg x2 a day, plus 20 mgs quick release x2 a day, but she was still in pain, to make matters worse, she woke with diahreah which totally freaked her out.
Again, I called on the macmillan nurse, telling her what had happened, she said that she would now push for the etopiside to be reduced and that I should skip that evenings dose. I cannot even begin to express how relieved I was that I didn't have to give her this medicine again to make her feel so wretched.
The following morning, Michelle felt much better in her self, stating that she wanted to go to school. I measured out 20mg of the etopiside for her, and gave her the pain relief, and off she went. For the whole of the day I sat waiting on the phone call from school to say Shell needed to come home, but no call (thank God, a good day) She came home exhausted, but happy, with plenty to tell of her first day back plus first day at new school.
NO Vomitting now for TWO days, how cool is that :) The only thing now though, is the bone pain, nothing is remedying it, and so I am waiting now for stronger pain relief for that, as the morphine has no effect on this what so ever.
I have told Michelle, she should rest as much as possible, if she needs anything at all, me, marsella or julian will get it for her, so she can keep all of her strength for school.
For the moment she is sleeping, so I will sign off now, and go cook something for when she wakes
Thank you to all who check on us
God bless to all who walk our road
ps special prayers to Katia and family
love
jacqui
Thursday, October 2, 2003 6:51 PM CDT Forgive me if I seem to ramble, lose the plot, or jump from one part of this entry to another then back again.
It is 12.54am here, Michelle has finally gone to sleep.
She began her 21 day course of etopiside on Tuesday morning. This is the third round of a possible six. Since Michelles platelet count has risen, our consultant decided to increase the dose from 20mgx2 per day, to 40mgx2.
On the first two rounds, Michelle held out really well, only getting sick in the seven day break. This time it is different. She hasn't stopped vomitting since about 5hrs after the first dose, until a couple of hours ago.
I called on our macmillan nurse, she tried to get in touch with our consultant but was unable to. She feels that it is possible that the etopiside may have to be reduced back to 20mgx2, as it is possibly why she is so sick. Also her morphine has been raised to 70mgsx2 per day as she has had a considerable amount of continuous pain that nothing has been able to control.
This afternoon, we sat and drew some pictures. I haven't drawn for years, but I am quite pleased with a picture I am copying from a photo of me n Shell, when it is finished I will scan it and put it up.
As we sat drawing, Michelle decided it was a good time to talk about how I am coping, or rather how I will cope when she passes. It kind of startled me a little. How the hell do you be fifteen, and worry about stuff like that?
I said I will be fine, as I will have plenty to do in keeping her memory alive. She asked me how I will do that.
I told her of my plans to begin a project, hopefully to raise money for research into neuroblastoma, also to raise money for usable facilities for teenage cancer fighters, as we have found that most things are aimed at the younger child. This will be in honor of Michelle, in her namesake, so that people will never forget her and her brave fight.
I also told her that I will have plenty to do in keeping her place tidy, kind of like a miniature garden. Michelle was smiling when I told her this, she said that this made her very happy.
Then Michelle hit me with what has been really worrying her. Her greatest fear is that I will not be able to cope with losing her, she feels that after my losing Leona, my first born, that losing her might push me over the edge. She said that she cries for me, and that she could never imagine what I must have been through, only to face it again.
Michelle is young lady, who at fifteen years of age, should still be at that stage of life where her own world is the be all and end all, I dont mean that in a horrible way, I mean that as in, learning to love herself, learning to cope with new responisbilities, having fun, keeping up with the latest fashion, and latest gossip.
Instead, she is more wise than I who am twentyfive years her senior. Some times I wonder how the hell I was blessed with such a caring, considerate, warm child as her. I only ever want the best for her, throughout life with my children, I have tried my best to give them all the love they need, I have always taken it for granted that my kids love me too, I never realise though, until today, just how much Michelle really does love and care for me. In the midst of all the fear, and worry, my girl managed to make me feel like I am the luckiest woman alive.
Thankyou for checking by on us.
God bless all who walk our road
jacqui
Tuesday, September 30, 2003 12:54 AM CDT I really don't know where to begin!!
We are all full of flu right now, so we are living amongst millions of tissues, flu remedies and hot soup!
I am on countdown mode, only 17 days to go for my 40th birthday, dunno whether to be happy to have lasted this long, or gutted that I am approaching awld gittedness :)
Things are'nt looking great for Michelle. She has become very depressed with all of what is going on. I think the delivery of the oxygen bottle brought things to a head with her. She commented to me that she has only ever seen very old, very sick people with these.
We went to clinic yesterday for bloods to be taken. what is normally an in and out 20 minute process took nearly 3 hours. 2 and 1/2 of those spent with Michelle talking to phred, our macmillan nurse.
Michelle looks as if she has the weight of the world on her shoulders, and for her, she probably has. On talking with Phred, she expressed that she doesn't see much point in taking the etopiside any longer as it is not going to make her better. Phred told her, that if she really wishes to stop taking it, that she should have a good talk with myself, and if the end result is the same, then she wont have to take it any more.
Phred told Michelle that if she were to stop taking the etopiside, that she would become very sick, very soon. At least with the etopiside, she will have a good couple of weeks before she becomes very sick, and so recommends that Michelle continues with it. She also said that should Michelle become any sicker whilst taking it, the consultant would stop the treatment.
Michelle talked of the things that hurt her, things that she will never be able to do, or have. It breaks her heart that she will never have children. She asked, what was the point of God putting her on this earth, only to take her away without ever having children of her own.
It hurts her to know she will never be able to go and see the land in Barbados that her nana gwen left for her.
It hurts her that she will only be a distant memory for her nephews and nieces, the oldest being 2yrs. We tried to tell her that we would all keep her memory alive for the children, but she says she knows their love and memory of her will fade, as has hers as she has grown and time has taken its toll on her own memories. She said that photos and videos, cant give the hugs, love and kisses that keep love alive for children so young.
It was also confirmed that the lump in her neck is another tumor. Michelle says it feels like it is growing more inside, growing around the back of her throat. It was really difficult for me and Phred to hold back tears as she explained what it feels like.
I cannot help but feeling so damned angry. It is bad enough to know that this godforsaken disease is killing my baby slowly, but it has also dawned on me that she is going to feel like she is suffocating. It is so unfair that she has to go through so damned much pain and fear, and worse yet to come. I cannot get my head around how life can be so cruel to one who has bearly experienced life yet.
Michelle says that she is worried for me when she passes, as we are so close, and she knows it will hit me hard. I so wish she would think more of herself.
It has been recommended that Michelle be given anti-depressants to help eleviate the feelings that she is experiencing. It has also been arranged for her to have some counselling. She has finally accepted that she should talk to someone about what she is feeling. I have so tried to get her to talk with me, but she just can't. I understand that it is her love for me that makes it so difficult for her, I just wish she would think about what she needs as more important, instead of bottling everything up inside.
We are going to take Michelle on a long weekend to Blackpool a week Friday, hopefully she will have some fun and it might help to lift her spirits.
We have finally got school sorted. I am going to take her in the morning to start her first day. Hopefully this will be helpful as well.
We will also be going to watch Julian singing tomorrow evening, he is involved in Liverpool's Black History Month.
Tomorrow, Fade2 will be the Temptations in a Mowtown Special.
Thankyou to everyone who is following our story, your prayers and kind comments mean so much to us.
God bless to all who walk our road
jacqui
Sunday, September 28, 2003 11:05 AM CDT Hi to all.
We are all home now from Scotland. We stayed at Malcom Sargent house in Prestwick. The people who looked after us were wonderful, and very friendly. Michelle got attached to a lady called Tracy, she was very sweet, Michelle felt very comfortable to talk with her about everything which was really nice.
Unfortunately, our last night ended with Michelle being admitted to Ayre Hospital as she was having trouble with her breathing, and had a temp of 101f. She was kept in for two days observation, and a course of antibiotics.
We were driven home by Tracy and her mum. When we got back, I called Macmillan nurse so they could come check Michelle to make sure she was ok, as she is getting out of breath just speaking now.
They told us that there wasn't much point in getting a doctor to check her out, as everything that can be done already is. Today they brought oxygen for Michelle to use when she gets short of breath. It really doesn't look to good right now. I am praying that this is just a blip and that Michelle gets back on her feet, but my gut tells me that maybe she is not responding to the treatment she is currently taking and that time may be running out. I pray that I am wrong as everything seems to be going too fast.
Please remember my Shell in your prayers as we really need them right now
God bless to all who walk our road
Jacqui
Monday, September 22, 2003 4:10 PM CDT I would like to thank all of you who have signed our book and also those of you who have passed in to check on Michelle's progress.
We have had quite a busy week with preparing for our trip to Scotland (that is where I am updating from right now, arriving today).
We had to to get Michelle checked up just to make sure that she would be well enough to travel. We learned that her platelets are the highest they have ever been at one hundred and fifty, Haemoglobin at eleven. five. So that was good news.
Then there was the shopping for all that we would need for our trip. This was fun, we took my dad's wife, Norma along and made a day of it, going for dinner and stuff.
We had a family barbeque that was really nice too, the kids had their friends around which was really good.
My brother called in with his family to let us know that he is arranging a benefit night for Michelle. This will be the first time in all of this that anything like this has been done for her, I was quite touched by this.
On Friday gone, My cousin took me to Manchester to the Kelly Rowlands concert. He had decided that I needed a break from everything as everything is based around Michelle, I really dont mind that because as far as I am concerned, she is the one who is most important in all of this. Anyway, I went and had a very nice evening with my cousin. This is the first time we have done anything like that for a very long time. The good bit of this though, was that my son Julian, was also at the concert, to meet the tour managers and leave with them a video of there last performance. Fingers crossed, something good may come of this.
Sunday was a bit of a hard day, it started out okay, but by 12noon, Shell had a bad headache. After having pain killers to ease it, and resting on the couch there was little improvement. Half way through cooking Sunday dinner, I went to check on her and see that she was okay. As I hugged her, I could feel that she was really warm, so took her temp.
On the Friday, we had the Macmillan nurse out to make sure that everything was okay and that we were covered for Michelle's medications. We pointed out that Michelle's neck had been giving her some discomfort and that it was more swollen than usual. The nurse called her collegues to see what should be done, should we start giving Shells steroids. It was agreed that unless there was any difficulty in breathing, that Steroids should be ommited for now, nevertheless we have a supply just incase.
On Sunday, after taking Michelle's temp I thought it best to call out the Macmillan nurse as I was not comfortable with how Shell was feeling. The nurse came out and checked Michelle's neck saying that it is possible that this is another tumor and that the lumps on top of it are lymph nodes.
Michelle has a large lump that feels quite hard to the touch that covers almost one side and on that there are two smaller lumps, also on the other side of her neck another lump has appeared.
The nurse decided that we should take Michelle to the hospital to have her checked out. So off we went, after five hours we learned that Michelle now has to take the steroids after all. Hopefully this will reduce swelling. It seems to have helped with the temp anyway.
I am a little worried that things are moving rapidly with this disease and there is really nothing that any one can do about it
Well I will try and update soon
I am truely sorry that I haven't had chance to check on anyone for a while, but please remember, you are always in our prayers, and as soon as I have some real time on my hands I will be passing by to say hello to everyone
God bless to all who walk our road
Love
Jacqui
Monday, September 15, 2003 6:41 PM CDT I didn't realise how much time has passed since my last update.
First of all, I would like to say that Michelle is doing fine to date. We are on top of her pain (again), and the really good news is, after her losing a stone in wieght, something we were really worrying about, she has now gained half a stone. Well done Michelle.
Since my last up date, there have been that many things happening that quite frankly, I am wondering how the hell I haven't gone mad yet.
Our first bout of bad luck came about when my poor old car decided it has had enough of us for good. The past few months it has demanded that I spend all kinds of money on it, to fix one thing or another, only for it to pack up in the end.
My good friend decided to lend me her car until I can get another. I was so glad of this as Michelle is still not sorted with school yet. The car comes in handy when she gets bored, we can get to visit grandad, or go for a drive to the seaside, or whatever it is that she fancies to do that day.
Two days we had the car, there came old bad luck again. I told my friend that I was going to take the car and get it checked out, as something didn't seem right with the steering. In my humble assessment, I figured that maybe the tracking was out. But oh no, it was worse than that. As I was heading to the garage, the wishbone snapped, passenger side wheel literally hanging off. So we are back to no car, grrrr.
I cant remember if I have told of the problems we have had with Michelle's school before. It is a result of these problems that she is not in school now. We are trying to get her into a new school as soon as possible, as it is getting her down, because she feels that she is falling behind, and she so loves school.
I was at my wits end over this, as I had contacted the school that Michelle wants to attend. but wasn't getting anywhere fast. I sat and wrote a letter to her current school explaining why Michelle will not be returning. It goes as follows:
To whom it may concern
I am writing to inform you that Michelle Maughan will not be returning to your school as I am very unhappy with the lack of support your school has offered my child on her return to school after fighting Neuroblastoma (childhood cancer).
As I am sure you are aware, Michelle was absent from school for one whole year, returning at a very important stage of her school career, year 10. Given that it is at this stage children begin working toward ther c.c.s.e's. Michelle was given no support whatsoever.
After multiple requests by myself in person, in letter, and in her journal for Michelle to be tested for dyslexia, it took two academic years and myself having to ask every teacher who taught Michelle, to recommend her for testing. Finally Michelle was tested and it was found that, yes, she does have dyslexic tendancies and so needs to be tested further.
I could not believe when I came to the school on Reports Day, how every teacher passed comments on Michelle's attendance. After my coming to the school in person and informing both the head teacher, and Michelle's head of year of Michelle's diagnosis. Also Macmillan nurses came o the school to give a talk about Michelle's condition to her year group.
All of this and yet most of Michelle's teachers were ignorant of such critical information. Despite the fact that every time Michelle was off school, reasons were entered in the appropriate section of her journal that were signed by teachers. Also, as a result of comments made to Michelle regarding her attendance, the last time she was off school, I felt it necessary to submit a doctors not.
Toward the end of last term, Michelle had begun to feel poorly. During the last week of term, I was called at home to give permission for Michelle to have paracetamol for headaches. On the last day of term, Michelle was sent home by her form teacher because she was so poorly.
Given Michelles medical history, I was horrified to recieve a letter regarding Michelle's attendence days after the end of term. Two days after term ended, we learned that Michelle had in fact relapsed and her prognosis is fatal.
On the day I recieved the above letter, Michelle was in hospital very sick. I called the number on the letter only to learn that the welfare and attendance office at your school, had absolutely no Idea that Michelle had been terminally ill.
As a Catholic myself, I cannot believe that a Catholic school can be so neglectful of one of it's own pupils who has suffered so much in the past 2 1/"yrs, both with cancer and the struggle to catch up with school, with learning difficulties resulting from having dyslexic tendancies.
As a result, I have no choice but to find a school that is more supportive and sympathetic to Michelle's needs.
Copies of this letter have been forwarded to Liverpool Education Authority, and Liverpool City Council.
Yours sincerely
After me writing the above letter, I sat and read over it, and in my usual selfdoubting fashion, thought that I had better seek help, to see if the letter was worded properly, and to get it typed up with the necessary number of copies.
Off I went to see an old teacher of mine, who later became a collegue working in the same college as I. I figured that since it was her who got me through typing courses sucessfully, that she would be ideal in checking my letter.
When I visited her, explaining the situation and what I needed. She told me to leave the letter with her and she would get back to me. Three days later, she called me at home to inform me that she had made some calls, set up a meeting with me and a lady who heads a dyslexia unit in our area, also, she had read the letter, was quite happy with it's content, and had typed it and made the relevant copies.
She was so infuriated with my situation, that she had contacted the school, spoke to the head teacher and arranged a meeting with the three of us. I was amazed at the speed in which she had gotten things moving, and with the fact that she was prepared to back me up.
We met with the head teacher and the head of year, expressing and going into greater detail, the issues spoken of in my letter. It was very strange as before the meeting, I was a nervous wreck, feeling very intimidated by the whole stituation, to the point that I called my friend the night before, expressing that I was worried. She offered that she would do all of the talking, and if I didnt like the schools response, or should they try to trivialise or deny anything that was said, i should interject with my response. On the day however, my fear disappeared, my friend sat in the background as I dealt with there questions and questioned their excuses.
It was quite weird really to see that these people who had me feeling intimidated, were actually squirming, could not apologize enough, even offered to help with Michelle transfering to the school that she wishes to attend.
I realised that they are terrified that they will be exposed publicly, damaging their precious reputation, and are desperate to smooth things over. I could tell by the head teacher's attitude toward the head of year, that there was a definate tension, even anger at this situation.
I dont feel sorry for them, and as soon as this fight is over with Michelle, I will go further with this, as I feel that the school should be made accountable for the unimaginable stress that Michelle has had to deal with.
Sorry for going on and on and on as usual
thankyou for signing our guest book, it really does mean a lot to me and Michelle.
God bless to all who walk our road
love
Jacqui
Tuesday, September 9, 2003 7:36 AM CDT It has been a while since my last update I know, but to be honest with you, we have had so much going on that there really has been no time for me to get "free time".
We thought that everything had balanced out in dealing with Michelle's pain, and for a few days it was going OK. Then she was getting annoying pain in her leg. I called our nurse to report this, who then came out to visit and ask Michelle what the pain feels like. Michelle explained that it feels like a sharp ache in her bone. It was decided that at first, pain relief should be increased and if no joy from that, then she would be given a different type of pain relief.
It was a little difficult in actually assessing what was going on with Michelle, as she was in her break-time from her chemo, but she only had a day or two before her next course was to start. The nurse felt that introducing a new drug to Michelle, might cause some problems on starting chemo.
The increase of morphine did nothing for the leg pain what so ever. In the end it was decided that they should go ahead and give the new pain relief regardless, as it was agreed that this is a totally different type of pain that Michelle has experienced in her tummy. For a couple of days this seemed to do the trick. Last night though, poor kid was in agony with back pain. She only had half an hour to go before she was due pain relief, I figured her having it a little early shouldn't be a problem, so she had what she needed, and by bed time she was OK again.
I see a pattern it what is happening though. In that Michelle feels pain. This is addressed and pain relief is adjusted. Three or four days will pass, and then we need to start all over again. I know from what I have been told that the disease has spread extensively, and so it is only a matter of time before pain will break through in different parts of her body. The only way I can describe it is like, at first she had pain in her right leg(that was what let us know she had relapsed) From there she had pain in her tummy, then her neck, then her lower back, and now her left leg. Needless to say, if she experiences this leg pain again by the end of today, she will have to be re-assessed tomorrow for pain relief.
On a good note though, since the pain in her tummy has been under control, she seems to have a better appetite than she did before. It isn't no where near her normal, but it is better thank God.
God bless to all who are walking our road
Friday, September 5, 2003 2:36 PM CDT Thank You for dropping by and checking on us :)
First of all, it dawned on me as I was reading, that I have never actually introduced you to my family. But then that is me all over. As time goes by, you will get to learn that I do tend to do stuff in my own scatty little way.
When I first started writing here, i guess I was still a little ovewhelmed by the whole situation, and kinda used this as a means of documenting stuff relating soley to what is actually happening with Michelle, also how she and I were feeling about stuff.
As time has gone by, I have grown used to everything that is going on in our lives, and grown used to writing down what is in my head. I have never kept a diary. I have been given them as gifts so many times. By the time I remember I have it, or come across it somewhere in the realms of our house, half of the year has passed and so other uses are made of them, only to be forgotten anyway.
Maybe we in our family, have come to terms with what lies ahead. In the beginning there was a hell of a lot of crying, sleepless nights and constant worry for all of us. Now, we have found some kind of middle ground, and have fun with each other.
On to the Introduction:
I am mother of 5 children, the first would have been 22yrs in July gone. I lost her when she was three months old to cot death. The second is Danielle, 21yrs. She no longer lives at home. The third is Julian, 17yrs. He is still at home. The fourth is Michelle, you know her :) The fifth is Marsella, 15yrs, who came to live with us 21 October 2002. You can read her story in my journal history.
Up until Michelle was diagnosed, we were a typical family. I have raised them on my own since Michelle was about 2 1/2yrs old. I don't regret that for a minute. I was lucky that I always had work, and so financialy, it was Ok, we never got to go on major holidays, but we always had fun. They have all grown so well, theyr'e the sweetest people I have ever met.
The picture above was taken in 1991, Michelle was nearly 3yrs, Julian was 5, and Danielle was 8yrs. My dad gave me that pic about 2 weeks ago. I was so happy to see it, they just look so cute ;)
Thursday, September 4, 2003 5:21 PM CDT Today Marsella went back to school. She came home with no more than a senior prefect badge and a letter to state her responisbilities. She also told me that she had finally moved up to set one in Science. This is brilliant news for me.
Before Marsella came to live with us, she averaged at set three in her classes. Gradually she has worked her way up, Science being the last class to complete her timetable.
Well done Marsella, I am so proud of her.
My son, Julian, Has returned to college after a somewhat hectic summer break. He has done very well. About 10 months ago, he and some of his friends formed a group. they call themselves Fade2. Originally, they wanted to call themselces Fade 2 Black. They wanted this name as each of them is a different shade of black, from the darkest to the lightest. However, they found via the internet, that there is a band with that name somewhere in Sweden. So far, they have written and produced their own c.d. They have had quite a number of perfomances, that have gone down well. All of this has had us quite excited, as we are always off to some different venue to support him. Michelle has decided, for his next gig, we should have T-Shirts with their name on it.
I speak of all of this in relation to the beginning of the week. On Sunday, we had to call out the Macmillan nurse. Michelle's main worry, was that we were going to miss Julian perfoming on at 12.45pm that day. We have caught up on a lot of his shows, the last few though, we have missed. Michelle feels like she is letting him down, He is just greatful that everything is OK for her for that day.
He makes sure that he has videos of each performance, just incase we cant make it.
Michelle has been really great. She has started going out for a couple of hours with her friends. She hadn't done that since before 18 July, 2 days before we had found out for certain that she had relapsed. You can imagine how happy I was to see her, after all of this time, going and being Michelle. On Monday gone, she went to singing lessons, On Sunday, she played out, rolling down grassy hills with her friends :)
She has complained that it now takes her 20 minutes to walk what used to take her five minutes to run. It saddens her, as she ran for her school team, she was in the local girls basket ball team.. Michelle was so good at basket ball, she could run hoops around Julian, as she says, "put him to shame on the court". she has a pain in her upper right thigh for most of the time. I can see why there was so much urgency in the delivery of a wheelchair and a commode, so soon after us finding out Michelle had relapsed, In a matter of 7 weeks, I have notice so much change in her, and her abilities, it is unbelievable.
I really hope that Michelle has lots more days of playin out. Lots more days of being able to do everyday stuff that girls do at 15. Lots more days of creeping into my bed for a cuddle, only to leave me freezing with no duvet. Lots more days of telling me what she wants to do when she is older.
She has been practising braiding her own hair. I gotta say, for her age, she is doing a reall good job of it.. today, she did her braids so they crossed over eachother, until they reached a little bunch of tiny curls. It looks so cute. I told her, when she asked, that I would give her nine out of ten, considering she had one 6 in two hours and 13 minutes.
I will sign off for now. my prayers to Katia, and family and to all of those families who know our footsteps.
Love and God bless
jacqui
Tuesday, September 2, 2003 3:10 PM CDT Before I begin, I have to once again say thank you for your support, and your prayers for my Michelle. I don't need to tell you all how uplifting it is to read from you.
I realise today that this site is so good for all of us.
It helps us to open our eyes and our minds to others in a way that, until our children began thier fight for life, some of us only thought about fleetingly, some never at all.
I realised that I need each and every one of you, it isn't about finding people with the same diagnosis any more, it is about finding people with the same fight, for the well being and health of our precious children.
I realised that I no longer feel totally alone, for each and everyone of you show me that I am not.
I realised that no matter what, there really are good people in this world, who take time out of thier daily lives to send messages of support to others, oftentimes, offering helpful links and information.
I realise that all of the above makes our journey on this very rocky path, just that little more bearable, and I thank God for that.
special prayers for Katia, Tracy and family, that they maintain thier incredible strenght to get Katia through this.
prayers for all of those children who are fighting to get to remission, relapsed, getting fighting fit in remission and for those who have found thier wings.
Sunday, August 31, 2003 3:32 PM CDT Today got off to a bad start. Michelle had been up for about an hour before me and wasn't looking too good. I asked her how she was feeling, she said she had tummy pain. I asked her the usual questions, like had she been to the loo properly, had she eaten anything n so on, yes to both. I gave her a pill for the pain and we waited for a while to see if it helped. It didn't. I asked if she wanted me to call phred, the macmillan nurse. Michelle burst into tears and said yes.
Phred arived about 40 minutes later (Michelle has grown to love this woman) All the routine questions were asked, Michelle answered, whilst showing phred our latest photo albums.
I couln't help noticing that Michelle seemed more nervous than usual, and I couldn't figure out why. As phred was asking Michelle to describe pain, she asked how long had Shell been feeling like this, her reply was to be a revalation in it's self. Michelle told phred that she has always had the pain, when she has pain relief, it eases but it never goes away. Michelle didn't realise that she is not supposed to feel any pain at all
I couldn't believe it. All of this time, I really thought that we had this under control, but this has not been the case.
Phred told us we should increase the amount of breakthrough pain relief for today and that she would have Jan, our other nurse check up on us around 7pm to see how things went.
Michelle had gone out for a while with one of her friends. This was really good as she hasn't been over the doorstep with out me since we learned of her relapse. Jan called as planned, It was a good opportunity to discuss the days events whilst Michelle was out. During the conversation, Jan said that it is quite common for children to hold back on speaking out about what is happening inside. In Michelle's case, we have learned that she has a very high pain threshold, and so it seems that she has adapted herself to live with the pain, the psychological affect of this is not good though, because living with the pain, means she will be constantly worrying about what is going on. Even frightened that things may be even worse than what we have told her so far.
I have decided to draw out a pain scale for her, make as many copies as poss, so everyday, she can mark it to show the levels of what she is feeling on a scale of up to ten(ten being the worst). That way we can monitor her better and keep more ontop of things.
Jan said that we should raise her srm to 60mgs every morning and evening, monitor how this works, and review her in a couple of days, incase it needs to be raised further.
Before I sign off, I would just like to add a mention to little Katia and her family and ask for extra prayers to help them through
God Bless to all of us who walk this road
Saturday, August 30, 2003 10:30 AM CDT Things haven't been too bad over the last couple of days. We increased Michelle's morphine to 50mgs and that seems to be doin the trick. I think I have figured out why Michelle has been vommiting. I reckon it must be a side affect to the morphine.
We went to visit my dad today, had dinner and discussed our trip to Scotland that we have planned. My dad, his wife, me and the kids. This should be fun, also a great opportunity for Marsella to get to know her new family better.
Well, I have been trying to find anyone else out there, who like myself has a teen with Neuroblastoma. I suppose on the one hand, I should be glad that I haven't as I would truely not wish this horrible disease on anyone.
I am so grateful for those who hold Michelle in their prayers, who give us comforting messages.
Yet I feel so alone in this. So far, I have come across families with young children who have neuroblastoma. I really cant find myself contacting them, as I feel our case with it's negative out look may worry parents, or obscure their optimism with their own child's future.
I have read so much on the disease, but everything is aimed at the younger child.
I suppose I should have expected this, and accepted it by now. Maybe I am just desperate to find a light at the end of the tunnel, a teen who has survived to tell their story or learn of a miracle cure that might be out there somewhere in the world, that maybe we dont have here in the U.K.
I guess I am grasping at straws. The sane, rational side of me says 'hold tight, you have had plenty of time to come to terms with this, that should help with coping', but the angry, confused side of me feels like everything is slowly falling apart, inside and out. It leaves me as scared as hell. There Iv'e said it. pheeeew, sorry folks but I just had to get it out of my head
Friday, August 29, 2003 9:56 AM CDT I have just read Katia's page, and am devastated at what this family are going through at this time. Tracy is a truely amazing woman, giving encouragement, love, support and prayers to so many children and their families, all around the world.
I haven't quite figured yet how to add links to my page, but as soon as I do, they will be added. Tracy, Myron and their three beautiful daughters need so much positive energy and prayers to help with decisions, and treatment over the coming months.
For anyone who happens across my site, please, if you haven't already, please visit Katia's page and give your support
thank you
God bless to all who are walking our road
love jacqui
~~Katia's Site DX Leukemia AML~~
Thursday, August 28, 2003 9:39 AM CDT Yesterday the macmillan nurse decided that we should up Michelle's a.m/p.m morphine to 50mms and see how she does with that, if she continues to get breakthrough pain, then friday we will raise it to 60mms.
Michelle and Marsella stayed awake til about 4a.m talking in their room. Although I could hear their voices, I didn't know what they were talking about.
They got up around 2p.m. Marsella was first down the stairs. I joked with her about the time they had risen, and told her that I wasn't surprised being as they stayed awake chatting the night away. Marsella told me that Michelle was trying to explain to her what having cancer is like, how it makes her feel, how she imagines people outside look at her differently and so on. She told Marsella that she knows she is going to die. Marsella said that she didn't know what to say about that, she told Michelle that she believes she has the strenght to fight is for as long as is humanly possible.
One night when I had gone into their room, I found Marsella out of her bed, looking out of the window, Michelle was calling me in her sleep, but was well away. It concerned me seeing Marsella standing there, all alone in the middle of the night. I was trying to imagine what must have been going through her head. So today, I reminded Marsella of that night, and told her I was a little worried. I told her that I thought that maybe she was a little frightend of incase Michelle was to pass away in the night and she were to find her. I told her that for now, Whilst Michelle is still good, it is okay for Michelle to sleep in her room, But the first sign of any changes, I will take Michelle to sleep with me. I told Marsella that if she wants to sleep with us as well that she can, but if she prefers to stay in her own room then that is okay too. She can even alternate where she sleeps, so long as she is comfortable.
I figure that if we have to raise Michelle's morphine any more, then it will probably be better to have Michelle sleep with me. I am not sure of what the side affects are, But I imagine that it might have some effect on Shell's dreams n stuff, so she will probably feel safer sleeping with me anyway. I just hope that I am not supposed to have done this sooner, or that I am rushing in to things. I just want things to be as normal as possible for Michelle. I am frightened that if I make 2 many changes that it will make her think that things are worse than they are.
It must seem silly for those who have been through this, that I am worrying about where Shell sleeps, when there are probably worse things that lie ahead. I so wish I had a clue as to what is the right thing for me to do to make Michelle feel loved, but not smothered. I hope that speaking to Marsella about it hasn't stressed her out either. Maybe I should say nothing n just see what happens as time goes by. I really just wish we could wake up and none of this be happening, and life was the way it used to be.
God Bless to all of the children and parents who share our world of heartache and pain, giving them strength and courage to face each day
Wednesday, August 27, 2003 3:38 AM CDT Michelle is determined that she will go back to school. She has already started adjusting her medication times so that it will fit in to the school day routine. She has told me what kind of uniform skirt I should buy. We have already bought new school bags and equipment.
We have decided that she will not return to her old school, as they have been totally unsupportive of Michelle over these past 2 yrs and 5 months. I am just praying that the school we want her to go to, has enough room to accept her. Our macmillan nurse,Jan, has said that she will help anyway she can to get Michelle into this new school. They have the best dyslexia unit in Liverpool, and so Michelle will benefit all ways round.
I have not mentioned before (I think) Around october of last year, Michelle's best friend, Marsella, came to live with us permanently. They have been friends since they were four years old. Marsella's mum had a brain tumor, surgery left her unable to look after herself or her kids. As a result, she lives in residential care.
Marsella's life has been very difficult. She lost her sister, Kerry, to a tragic accident, Marsella wittnesed this. Kerry was nine, and she was seven.
When Marsella was nearly 12, her father and only living relative passed away from a massive heart attack.
Marsella went to live with a woman that I then believed to be her aunt. This woman treated Marsella so bad for the best part of 2 years. Unfortunately there was nothing I could do, until october of last year, when she arrived at my house covered with lumps and bruises, This woman had beaten her so bad. It sounds horrid for me to say, but this woman had done Marsella a favour, in that we finally had enough evidence to take her out of this situation.
Until Marsella came to live with us, she was doin poorly in school, understandable for what she must have been going through. Now she is in all of the top sets, and has set her mind on studying to become a lawyer. I am so proud of her, because nothing she has gone through has made her give up hope on her self.
I feel so much for her, as she loves Michelle, they tell people they are sisters, I guess at heart they are sisters for sure. I worry for her, because she is frightened of losing Michelle, she told me once that she wonders if she is an evil person because everyone she truely loves dies on her. I have asked the macmillan nurse can she arrange some kind of sibling support and counselling for her. Hopefully through this, Marsella will learn that these things that have happened in her life are not a punishment to her.
I talk with her all the time, and give her as much love and affection as i do my other children.
We are going to get some family portraits to go up on the wall, maybe this will help Marsella see that she is truely one of us and that no matter what happens, nothing will change that.
Marsella is at the school that we want Michelle to attend, I think this will be really good for them, as they get to spend as much time as possible together ;)
Monday, August 25, 2003 12:18 AM CDT Michelle had her last oral etopiside on Friday 22 August at 10.30pm. Saturday was going well until about 3 in the afternoon, when she started getting stomach pain. I gave her a 10mg morphine pill, we have these incase she has breakthrough pain in between taking 40mg of slow release morphine a.m and p.m.
On Sunday Michelle seemed a little off color. by 7 in the evening she was in agony. She said at first she thought is was hunger pains, an so had something to eat, but this just made the pain worse. I gave her a pill to ease the pain. She then had her pain killers at around 11p.m. By 2a.m, she was crying with the pain. so I had to give her another pill to fend of the pain. I asked her what it felt like. She took my arm, and squeezed it as tight as she could, and then said, like that, but even harder.
I sat with Michell until she went to sleep. I then went to my bed, was woken around 7 to hear Michelle vomitting.
I am wondering if this is because she is having a break from the etopiside, is it normal for this to happen. I told Michelle that i think it is like when she used to have chemo via her line. She would spend the day at hospital, sometimes three days, depending on what type of chemo they were giving her. She would be okay at hospital, then about a day or two later she would vomit.
I guess that the 21day course of etopiside that Michelle has is the equivilant of one of the bags she used to have infused. And now that a day or two has passed, it has made her sick.
Michelle asked her macmillan nurse if she was going to lose her hair again. Jan said that she more than likely will, although maybe not as drastically as last time, also it wont happen as quickly as it did. Last time around poor Shell had only been on the treatment for two weeks and the whole of her hair fell out in one go. I still cry when I think of it.
Michelle's hair prior to this, was really beautiful. She has afro hair. I had grown it from she was a baby. Every sunday I would braid it in a new style for her ready for school. Everyone used to forever compliment her on the styles she would have, as I would spend hours doing really intricate patterns with the cainrow style braids, sometimes zigzags, sometimes fancy swirls. When she was really young, she loved the attention people would pay to her styles. Later on as Michelle got older, she told me that she loved how I braided her hair, as no one ever had styles that she had, and that made her feel very special, and that she knew even from small that I loved her very much because of the hours I would spend making her look so pretty.
In my mind, I never realised she thought this way about it. For my part, I just wanted her hair to be very neat, train it to grow, also, because some children were a bit wierd about black people, I wanted her to always be proud of her hair that was different from her school mates.
Michelle's hair has only just reached long enough for me to do those braids again, I was so looking forward to me n Shell time, sat watching t.v on a sunday evening whilst i do her hair. And i am never going to be able to do it again for her. I am sorry for going on a little, and for going off track, but all of that dawned on me as I was doing this post, and fingers wanted to write it :)
Thursday, August 21, 2003 5:30 PM CDT Well, It is 11.32pm here in the U.K, and Michelle is attempting to try go asleep on her own 2nite. I can hear her pottering about in her room. No doubt she will call if she needs me;)
Before Michelle went to bed, she said, 'you know I get frightened sometimes because of the dreams I have about dying, well if I do pass, and you sense someone is in the room with you, don't be afraid to talk to me, because I will always be there. And if there are others with you and you feel silly, just say, I am going to the bathroom and I will follow you so we can talk in private'.
I told her I will talk to her everyday, and even if she can't answer me, I will tell her everything that is going on anyway because she will always be my best friend, and that is what best friends do.
It bugs me that I cant find a way to comfort her, I cant tell her that everything is going to be alright.
She tells us to feel her tummy so that we can feel the lump from what is inside her. She says it must be getting smaller, because it doesn't hurt her ribs as much as it did.I pray this is good and that the etopiside is doing its job.
Once again, I would just like to say that I really do appreciate the messages everyone leaves for us, and I am gradually getting around to thanking everyone on there own pages. If I havent reached you yet, it is not that I dont care, because I do, so much.
God bless to all of those families who have the need to visit with us and share with us.
Love Jacqui
Thursday, August 21, 2003 12:03 AM CDT Tomorrow, Michelle will have completed her first 21day course of etopiside. To date everything is going well, apart from the fact that now the skin on her feet is peeling of as did the skin on her hands. The skin pigmentation on her face is also a bit iffy. Normally she has a clear complexion, but now she has small white patches all over her cheeks. I will ask about this next week when we meet with Michelle's consultant. I am praying that Michelle is responding well to this treatment, as we have been told that if she doesn't then it will no longer be an option.
We have had a good day though. Michelle went swimming and managed to stay in the water for about 20 minutes. This is better than last time :)
Wednesday, August 20, 2003 2:13 PM CDT A Poem for Michelle
Life is a lot like the skies above
When it is bright and sunny
It resembles the warmth of love
When it is dull and grey and full of rain
it resembles the sadness that acompanies pain
Lately my skies have been dull and grey
for I know that Michelle will be taken one day
How I long for the sunny skies of yesterday
watching my little girl so happy in play
Sometimes lost in abandon to sunny skies above
we take for granted the child that we love
that we may watch them grow , to fill us with pride
as years pass by hoping sunny skies ne'er subside
Now the skies darken and daylight seems dim
fear of losing Michelle pains so much within
sweet young girl, like the sunshine so bright
you have filled my world with your warmth and your light
Mum
Tuesday, August 19, 2003 6:18 PM CDT Daaaahhhhhh, I forgot, Michelle's e-mail is supaslix@hotmail.com, how daft am I ;)
Tuesday, August 19, 2003 5:55 PM CDT Not doing too bad 2day, in that I am able to post for the 3rd time, i think.
Today has been quite a nice day. We went to see my dad, Shell's granddad, she enjoyed teaching him how to use his new mobile fone, telling him about our trip, and giving him pics. He gave us loads of pics too. Lots of him and his wife over the years, some of my brother, sister and I when we were kids, and some of my three kids when they were little. This really touched me, as I have very few pics of my kids when they where little, (there dad kept them all when we split, and refused to give me them)
A little about my dad. He has been so wonderful throughout all of this, even though his own health is not the greatest. It is strange really, because it only dawned on me about a week ago that he is my greatest support. This may sound a bit odd, and I wont go into too much detail, but he and mum split when i was about nine, there was a lot of getting back together and splitting again that eventually ended when I was about 15, and so for a lot of the time he was a weekend dad. He has always been there for me through no matter what, more infact than anyone else in my life. When Michelle went through five and a half hours surgery, he stayed at the hospital from before she had pre-med, until she was awake in intensive care, every one else close to us phoned for progress, and dropped in afterwards, some only when she went up to the regular ward. He decorated a room in his house for Shell, and provided her with everything she could possibly need for her stay in hospital. He visits whether she is in hospital or at home, and is planning a trip for him, his wife, me and my children real soon, this is a surprise for Michelle and Julian. It should be real fun, For a guy of 60, you would swear he was only in his forties by his outlook on life and the way he mucks about with the kids. I just thought I would share this, because he is really amazing, and it has taken me all of these years to realise that he deserves far more than i have ever given him credit for.
Michelle has not long gone to bed now, quite happy with her day and looking forward to tomorrow, this is because I have set her up with her own msn account. There have been so many messages directed to her on her caringbridge site, but I am afraid to show her incase she reads my journal entries as it might upset her reading my thoughts, so I figure it will be nice if she gets messages straight to her own e-mail, also if there are children who would like to get in touch with her, who are going through similar to her it could be really good for her to make friends with kids who can relate with her and not just feel sorry for her if you know what I mean. I hope I worded that right!
Well I will sign off for now
Love to all
my prayers are for all of us who share this road
Tuesday, August 19, 2003 5:11 AM CDT It is 17 days since Michelle started her etopiside. So far, she hasn't lost any hair, hasn't been sick and has been kinda okay. She is not eating nearly as much as she should be though. the skin on her hands is peeling terribly, no matter what creams we use, nothing seems to help. I can see that the weight is dropping off her, oddly enough though, her hair and fingernails are growing at the speed of light, how wierd is that?
Michelle is quite fragile in her moods, and is still crying a lot. Michelle puts a lot of her crying down to the fact that she thinks the medication makes her a little depressed. I think there may be a little truth in that, but it is more likely that this is such a heavy burden for her and she doesn't want me to worry too much.
Michelle has 40mg of slow release morphine in the morning and again at night, she has started to get a lot of headaches, but refuses to take paracemamol as she doesn't want to take any more tablets.
Today I shall take her to see grandad, so she can give him some pics of our trip to London, and she can tell him all about it. Hopefully that might cheer her up for a while.
I will get her some magazines and some new make-up so we can play dress up later, take some more pics, since she loves to dress up n pose for pics.
God Bless
and Prayers to all those children and families who are travelling this difficult road
x
Monday, August 18, 2003 5:38 PM CDT I know it has been a while since my last update, but we have had a lot of nice weather and have been making the most of it ;).
We have had a lot of fun, but it has been very emotional at the same time.
I cannot thank the Make A Wish Foundation enough, they had granted Michelle's wish and sent us to London for three wonderful days. Shell and I were booked into the Grosvenor House Hotel, and treated like millionairs. Our first evening we went to see the Lion King at the Lycium Theatre.
The following morning we were picked up by stretch limo, and taken to do some serious shopping. Michelle got an outfit from the Burberry shop and two outfits from Next, we were then chauferred to TFG's restaurant for lunch. On the final day, Michelle had a surprise for me. A massage at the hotel's health club. It was amazing as I have never had one before.
I was so touched that Michelle had included me in her wish, including a surprise for me. She really never ceases to amaze me with her thoughtfulness:)
We took hundreds of pics, some of which I will put in our page album (will do that 2morrow)
Our final afternoon we spent sightseeing. It was at this time Michelle had asked me if she has more chance of dying this time. I told her that it is a strong possibility. In a strange kind of way, it was good that she asked me, because she was then able to talk freely of what she had been thinking, of what her fears are, and what her wishes are to be should she pass.
Michelle is truely a strong, very brave young lady who even during such a time that she has to endure, she still gives me strenght and courage, and just makes me love her even more.
Monday, August 18, 2003 5:35 PM CDT Before I do my joournal, I would just like to say a great big thankyou to all who have viewed/signed our guestbook. I cannot tell you how warming and comforting it is to see that so many people are praying for my Michelle.
I would also like to apologise to those of you whose sites I have not yet managed to visit, but promise either me or Michelle will thankyou on your sites.
Wednesday, July 30, 2003 4:36 AM CDT I crept into Michelle's room last night to give her a kiss, I always do that with the kids before I go to sleep.
Michelle was crying, no noise, just tears. I asked her why she was crying, she said she was to scared to go to sleep. I asked her why, she said because if she goes to sleep, she will be one day closer. It dawned on me that she knows.
Tuesday, July 29, 2003 1:12 PM CDT After a kind of emotionally up and down week since Michelle was in hospital, we finally got a full report on scan and urine test results. The consultant explained to us that bone scans had shown that there was something seen just below her knees, and her right shoulder. Other scans showed that there was a large mass in her tummy, along with another mass in her throat. There were also other lymph things that spread throughout her torso. The consultant explained that oral chemo is the best option, but could only be given at a 50% of the normal dose as her platelets still haven't recovered from previous treatment. She told Michelle how sorry she was. Michelle cried for a little while. The treatment to be given will on a 21days on, 7 days off, during the seven days, Michelle will be checked to see how she is responding.
We left the hospital, went into town to do some shopping. Michelle wanted clear mascara and some temporary tattoos.
I treated her to 2 new outfits, as she has a photo shoot booked for this week. (funny how things turn out, on making the appointment, we had no idea Michelle had relapsed).
We left town and went home. Michelle slept for most of the journey. We were only in the house a short time before she vomitted enough to fill two and a half recievers and a the floor. I am useless at these things, as much as I try, I cant stop the wretching at the smell. I wrapped a folded towel around my nose and mouth so I could clean up. I felt ashamed because it is not her fault she was sick. I hate to see her look at me as if she has done something wrong. The good thing was, she said she felt a hundred percent better afterwards. Tomorrow we will go and see grandad. He spoils her rotten at the best of times, as he does my other children. I see the pain in his eyes though. He has already helped me to bury my first born.
He gave me a cam-corder today, mine has been in the repair shop for about a month now, everytime I plan to get it out, something else crops up. With it was a cassette with film he had taken of the kids n me years ago. It was funny, because I wouldnt look at the camera, but the kids had a field day with it, Julian, my son pulling all kinds of silly faces the way they do at 8, Michelle posing and dancing around, I had almost forgot how cute they were when they were that young. I couldn't help but once again thank God for such beautiful children.
Saturday, July 26, 2003 11:31 AM CDT Today I am thinking back to when Michelle was around seven years old. She was a very, very happy outgoing little girl, who always had a smile for everyone. I had began to notice at this point that although she tried so very hard to learn how to read and write, she was just not as good as her brother and sister were at that age. I would sit for hours with her, going through stuff that she could get from school, plus stuff we got from the library. My son would also involve himself in this as he so loves to read. It was to become a part of our 'special time' routine.
God forgive me, for years I thought, maybe she is just a little slow, and that her vocation in life would be in some kind of caring work rather than some top flyer who would excel in university. The reason why I always thought that she would grow to work in the caring profession is because she has always had time for young children, elderly neighbours and people less fortunate than her self. This had become apparent at an early age. She has never accepted money of people for helping them. She says she doesn't do it for that.
It wasn't until Michelle was Diagnosed with Neuroblastoma stge IV, I began researching into the disease and low and behold what did I find? Children who suffer this disease are more likely to be dyslexic, since the disease affects the sympathetic nervous system. Michelle wasn't slow after all :)
I learned just how unsupportive of Michelle her school was, as it took almost 2 years of my constant requests, the final being quite terse, as I told her teachers I felt that since Michelle has been diagnosed with cancer, that they dont see the point in investing money on tests and equipment to aide her learning. Within 2 days of this, she was tested and it was found that yes she is dyslexic. How hard it must have been for her throughout her school life having to suffer the often upsetting remarks about her handwriting and spelling, that were to run through all of her school books
Friday, July 25, 2003 7:03 PM CDT Michelle was born 28/04/1988 weighing 7lb8oz. She was a beautiful baby. She cried a lot. Doctors put this down to colic at first, then said 'she is a crying baby, there is nothing wrong with her'. Every week we attended baby clinic. Michelle was developing well. By the time she was five months old, she would have episodes of screaming holding her breath till she would pass out, going blue in the face and limp in my arms. I would take her to the doctors to be told 'she is having temper tantrums' this carried on till she was 3yrs old, then it stopped. As Michelle grew older and her conversational skills developed she seemed to be the happiest child I know. She is the youngest of 3.
She started pre-school at the age of 4, teachers loved her because she was so friendly and always willing to help. She was very confident in herself part-taking in school plays, sports and so on.
With my other two children, Danielle and Julian, I had the usual things that mothers have with there children, needles to say stuff that kids do, and grow out of. With Michelle it has been different. As I have never known what is like to have to tell her off for anything. I have always thought, she is my angel and how lucky I am to have her in my life. I now thank god that she has no memories of being grounded because she was naughty, has no memories of mum being cross or disappointed in her. I now thank god that I have no memories of Michelle sulking with me because I have had to tell her off. It is almost as if it was in God's plan that she should have a perfect relationship full of love with me, because she was only meant to be here for a while. I thank God for giving me Michelle, because she has taught me so much, She is not just my baby, she is my best friend.
Thursday, July 24, 2003 5:31 PM CDT This page is Dedicated to my daughter, Michelle aged 15yrs and 3mnths. She was diagnosed with neuroblastoma stage IV, two days before her 13 birthday. She has been nineteen months in remission. Sadly, we learned on 19 july of this year that the disease has returned. This time we have been told that the only thing that can b done is to think of quality of life.
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