Nursing a child til death

[ryansmumlondon]

My son was 14 when diagnosed with ALL leukaemia.  He faced it with his usual strength and cheerfulness that was awesome to see.  I had had cancer a few years earlier so he was confident he would be ok and so was i.  My husband and i had separated 8 years earlier and Ryan wasn't very close to his dad.  The hospital quoted an 88% total cure rate which seemed like good odds.  We lived in and out of the hosptial from March until July when we had the news that the leukeamia had travelled to his spinal fluid so he would need a bone marrow transplant.  They wouldn't  tell us at that point what the survival rates were.  We saw some kids on the ward leave healthily and one on the ward who had been in over a year since transplant with various rejection problems.  Luckily Ryan's older sister was a perfect bone marrow match and he had the transplant in October.  The chemotherapy that preceded the transplant and radiotherapy left him with severe neurpathic pain and he ended up on large doses of morphine but we were still sure he would be OK.  I lived at the hospital with him all this time. Sometime in the begining of November he got a chest infection and was eventually transferred to the intensive care unit.  He seemed to be doing ok and started with a breathing mask only.  He was put on a ventilator and sedated about a week later as it was causing his body a lot of strain to breathe.  At this point all his blood results came back clear of leukaemia.  His oxygen levels were in the high 90%s and they were trying to wean him off the vent.  They then diagnosed ARDS which has a 35% death rate. As he kept fighting the ventilator he was completely sedated and unconcious but i used to put cream on his skin which had been damaged by radiotherapy and massage his feet which he loved.  The last thing he said to me was we're not going to get home for Christmas are we?  On 22nd December his oxygen levels dropped and the hospital couldn't get them up again and told me to prepare to say goodbye to him.  I called my husband who came but was rude and abusive to me in the hospital which was even more distressing.  I held my boy in my arms when he took his last breath at 6.00pm.  I can't explain how that felt, i told him i loved him and i've been slowly falling to bits more and more since. I told him i wouldn't let him die and i did and can't get over that.  My 19 year old daughter blames me and is now smoking skunk everyday.  My husband wants me to sell the house and leave but i don't wan't to pack up my boy's room yet.  How do i start to deal with this?  He would have been 16 on July 1 and all his friends still come over which sometimes i feel is nice but painful.  They've all done their important exams now and are looking at going to college.  He didn't get a chance to do any of that.  My daughter has attacked me and her only interest in me is money for drugs.  If i don't shell out she attacks me and one time i called the police and that has made our relationship even worse, even though we still live together.  I just want my baby back and i can't cope.  It's been six months but i feel worse than i did when it first happened. 

[hotrod]

Dear Ryansmum

I am so very sorry for your profound loss.  Your love for Ryan is so very powerful and evident in each word you have written  I understand what an extremely difficult road you have traveled with Ryan's illness and the beautiful gift you gave him by being close, massaging his feet and  caring.  Your account of his last moments truly touched my heart.

I lost my only child Stephen 3 years ago and coming to this Board and finding like minded Moms and Dads saved my sanity and life.  Most post on theLoss of an Adult Child board here.  So when you return just click onthis Loss of an Adult Child and share your heart.  Many will be there. and welcome you  

  PLease post a picture of Ryan as it really helps to know the child and also come here often  The support you receive will help you to deal with the difficult living situation you are enduring.

Praying for your peace. 

[shorty16]

Ryans Mum

So sorry for your loss.  There are many on this site that have lost children due to illness, I am not one of them.  My Brian (16) was killed almost instantly in a car crash.  No chance to see him take his last breath.

Even though I do not know you and please do not think I am rude, but you need to get away from your daughter or visa versa.  This "attaching" is not healthy.

It is very hard to know what to do with our kids stuff.  Some (like me) had to clear it up right away, because his bedroom turned into the X-box co-ed room.  And having a bed in there was not a good idea. 

Right now think of you.  Time to grieve your son without harassment.

Colleen

[josephsmom90]

[user=56041]ryansmumlondon[/user],

I just read your story and it breaks my heart! I am so sorry for your loss. I share your pain! I too, know all about 'family' beating u up. Peace.

Elaine

[ryansmumlondon]

Elaine, thank you so much.  It means a lot to know that other people have the same kind of problems. I hope you have peace in your life too.  I managed to get through Ryan's birthday, with a little help from his friends and mine and my daughter is now getting some help for her addiction problems.  Our relationship has improved a bit but i don't think it will ever be the same and, when the house is sold, i will live apart from her.  Just me and my two dogs - sometimes they are all that keeps me going. 

With much love to you and yours xxx

[Kelly]

Dear Members,

We are excited to mention that we are moving to a more new and improved message boards on MONDAY MORNING AUGUST 9th! The boards will be done for a few hours while we are making the conversation. Remember we posted information about this move a month ago. For some of you this might seem a bit sudden,  but when we were reviewing the site we determined the current message board you are using is out of date and the company that designed it is no longer in existence. The good news is this new message board will have new features that have been requested in the past like more fields we can add to your profiles and a chat room up to 20 people at one time. If we find the chat room is bursting at the seams we will add additional room for extra people. All your old posts, private messages and such will be migrated to the new message board. You might have to put up your profile picture again but not sure. The new company will be doing the migration for us. Here is a short list of some of the new features on the board:

- Custom Profile Fields- Users can customize their profile pages by selecting a background color or background image, with tiling options.- Facebook and Twitter Integration- users can respond to multiple posts at once with "mini-quote"- Pinned discussion threads - like welcome to our board etc.- Announcements made across some boards or the entire message board- Search: Users can easily find all content generated by a particular member, by clicking the 'Find Content' button that appears on the main profile page, or in the Mini Profile Popup which can be accessed throughout the board. The results page allows content to be filtered by application, as well whether the member created it or merely participated in it. - Privacy: allows users to sign in anonymously, hiding them from the online users list. Users also have the option to disable personal conversations and user-to-user emails, as well as ignore other users if necessary.

The next exciting piece of news about the new message board is it will have a new domain name of www.grieving.com for search engine optimization purposes. It will still be apart of Beyond Indigo and can be found through www.beyondindigo.com. We will be redirecting your current URL's to this new domain name but we might miss a few. If that is the case simply go back to www.grieving.com or www.beyondindigo.com to find your message board thread. We will try to make the transition as seamless as possible. 

The bottom line is the new board will give us room to grow our community and more options to interact better with each other. 

If you have any questions please direct them to feedback@beyondindigo.com. 

Kelly Baltzell, MACEO/PresidentBeyond Indigo Family