been looking for months for others dealing with ES

My 19 yr old son was diagnosed in Sept, 06  with ES,  with metastasis in the lungs,  He had back pain for about a month that went undiagnosed,  doc thought he was just a teenager looking for pain meds.... 3 hospitals later and 3 weeks straight in the hospital,  we got that gut wrenching news you never want to hear............. and so began our journey into the unknown,  it certainly becomes another world,  you find out who your friends are,  and you are scared shitless about what is coming in the future.

I am sitting here tonite wondering if I am doing the right thing,  If I am being a good enuff mom,  am I making decisions that I will regret,  Do I want to see him suffer so much just to have him here longer.......... MY MIND is reeeling with all sorts of confusing thoughts,  I am sitting here typing while Rick is lying on the couch,  being pain free, only because he is in a morphine induced stupor............. on tuesday this week he was taken off the vicodin and morphine pills and put on a Fentanyl patch and Roxonol,   his pain isnt being controlled,  just short spurts here and there.

Ricks tumor is located in the left hip bone,  and had broken through the bone and is growing in his pelvic area,  mostly on the left side,  it has several lobes  (multi-lobular),  they are wrapped around the nerve bundle at the base of his spine,  which causes him severe neuropathy in his left hip, leg and foot,  cant even put a sheet on his foot.  he has lost control of his bladder and bowel muscles,  he must use his abdominal muscles to go to the bathroom, and accidents happen often,  he cant tell most of the time if he has to go.  he has been through 6 rounds of chemo so far,  3 - 5 days each time,  every 3 weeks.  we were doctoring at Beaumont Hospital in Royal Oak Michigan,  that is until last tuesday when we had to fire the doctor,  they werent following the protocol,  there was too much miscommunication with his staff,  they sent him home on christmas day with a hole in his central line,  ( no surgeons because of christmas) gee good thing it wasnt an emergency or something,  this is just a short list of the problems we encountered while doctoring there,  Rick and I had finally had enough and decided to find another DR,  and this time closer to home,  ( we had to travel 3 hrs,  for treatments,)   We should be hearing about an appointment at Sparrow Hospital in Lansing Michigan,  either today or monday.  I just worry so much because this puts his treatment even further behind,  but I had to do something other than sit back and take thier abuse of the situation.  I am not one to turn the other cheek too many times........... New Year,  New Beginning,,,,,,,,,,,,,,,,,  we have visiting nurses in the home 2 times a week,  and next week they are going to send in someone to help me with his baths and such,  ( i am 5'4  and he is 6'3  I have a hard time helping him in and out of the shower,  he is so unsteady because he cant walk well because of the leg and foot pain.  I feel so alone,  as no one in our  area has ever heard of this kind of tumor and feel so lost as to what to do for him........  We got some of his mid treatment results back last week and the MRI shows that one side of the tumor has improved, while the one lobe on the right side has more than doubled in size........ not good news,  but explains why he is now showing symptoms of neuropothy on the right side and is in so much more pain................ Blessings and Good thoughts to all of you........ May you find peace of mind............... and well wishes to your families

Mari

well,  good news sort of,   we have switched docs and hospital systems,  they deal with this tumor alot more than the other hospital,  we had a meeting with new docs on wednesday,  they seem to listen alot better, they switched all his meds,  this week we will be at the hospital all week,  fixing broviac hole,  chemo,  and possibly starting radiation,  at least here I have family to see,  and they also have a ronald mcdonald house.

more later..............Mari

Mari

Your on the wrong 'page' on this site ...there are at least 4 others (including me ) who leave messages regularly about our 19 & 20 year old sons & daughters who are battling ES ......I am the mother of the longest 'suffering' or longest 'surviving' which ever way you want to look at it  ....my son Ryan has been walking this walk for almost 4 years now ( 4th anniversary 23 March)  & he was 20 on 15th October 06, there is Jef's Mum Angie but sadly Jef past on, on 2nd august last year....it was his birthday there on 1st of Feb, he would be 20, so Angie not doing so well,  then there's Suzie Mum of Rhandi (might be spelt wrong) she is 19 also  & theres' Janet Mum of Jackie who is also 19 ...she is just finished her 9months of chemo radio etc and is currently in remission, her Es is on her ribs (same as Ryan...can't remember where Rhandi's is but think last thing I recall she had now been told it wasn't ES but some other type ....Jef's  was on his pelvis then spread to his spine .......go to the other page within this site under sarcoma then ewings it will have a total number of messages showing approx 90...it does say last message left some time ago (can't remember when) but its wrong think that was when the first message was left so it is very much the 'page' we Mums talk to each other on .....there is also Jef's web site dedicated lovingly by Angie ....if you type in Jefology you'll see Jef and read all about him....catch up with the rest of our stories at the other page and you'll now be added to all our prayers....other's are all in different parts of USA ...but me & Ryan we're in Scotland ...I'm going to visit Angie in US next week ...going to cheer her up ....can't wait...hope you and your son get strength from our stories and our battles .....hope he is having less pain!  You are quite right to fire the Dr ....this is a battle ....nvever forget that ...I've battled long and hard ....with Drs with surgeons you name it ...I've left the cancer battle to Ryan and he is still fighting ...hope you get this hope it gives you courage and a sense of belonging ...we all know where you are ....we all know your feelings only too well ...catch us at the other page

take care

 Karen

Hi

My 10 year old son was diagnosed in September 07. On the Sacrum (bottom of his spine and against his central nervous system). I related to your message entirely, I empathised completey.. It was like hearing me talk on the disease.

Tyler went from having an ache in his leg to cruches then onto a wheel chair before he was diagnosed. It took 8 doctors and 8 weeks to get to the bottom of what was happening. Until diagnosis he was eating panadol for the pain. (he has a high pain threshold). His prognosis was not good. Unfortunately they don't have much data/info for the sacrum so its thrown into the pelvic region data/info which the odds given were not good.

The medication balance was a nightmare because they were dealing with both soft tissue and bone. The accidents were extremely upsetting for him, I could change bed sheets 4 times in one hour. If he wasnt soiling the bed he was throwing up... but for him the saving grace was it hadnt spread yet.....

He now done cycle 8 and is nearly finished radiation.. the tumour has significantly reduced...The pain has gone and with that the medication, however within a week of giving up the medication he no longer was throwing up or having accidents....Im not sure if thats a coincidence or not..he went from wheel chair to cruches to hobbling and is now walking..Christmas has come and gone and we didnt notice. We had him home on the day but in hospital the day before and after..his counts are always too low between chemos.

 Until 4 weeks ago we spent 3 weeks of every month in hospital. Its a lifestyle and impacts greatly on day to day. The disease is the controller which is hard to digest that you cannot do anything but appear to be strong around your child, my partner and I especially me have commented that we never want to make such life and death decisions again.The responsibilty is huge and hopefully with gods blessing we wont have to again for a long time.

We found that Aloe Vera Juice extremely helped Tyler, you can pick it up with any health shop..Check with the Dr first.

 Someone once said to me when I was told about my son's disease, I said " Im not strong enough to cope with this" and the reply I got was

" you are strong enough otherwise it wouldnt be happening to you". You will find your reserve and you will find out who are good friends around you are. My prayers and thoughts are out there and I am sending out lots of loving energy for you.

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