Our Pal - Megan R

Megan passed away at 8.17 yesterday (24th June 2007). We greatly appreciate all the gifts and kind thoughts sent to her by everyone. Many thanks, Nigel (Dad)

Story written 2006

Megan is a bright, happy, smart, courageous 11 year old girl. In her short life she has had 18 operations on her brain, spinal cord and legs. In these last two years alone she was in hospital for two months for brain surgery, then four more times for spinal and tummy operations. She is about to be admitted again for a very big scoliosis surgery.

Megan suffers from, Spinal Bifida, Chari malformation, syringomyelia, VP shunt, Spinabifida, Scoliosis, Osteoporosis, EDS.

Megan was operated on when she was a few hours old for spinabifida and hydrocephalus and had a VP shunt put in and back surgery. She was very mobile and we were given a very positive prognosis and were told she would probably not need a wheelchair as she walked well.

Things were great until she was almost four and she began to fall down a lot and had problems swallowing. An MRI diagnosed Chari and Syingmyelia. This is a group of conditions in which there is an abnormal collection of CSF fluid within the spinal cord. It is progressive and degenerative with no cure. It can destroy nerve endings and cause severe chronic pain and muscle wastage. Megan even had eye and facial pain.

Megan has since had two posterior fossa decompressions and many other head and spinal operations. She has had to let go of a lot of her independence as her shoulder and hips have dislocated and her legs no longer straighten out.

She has had to have a gastrostomy as she cannot eat and swallow. She developed severe osteoporosis when she was 7 and this past year scoliosis, which has accelerated so fast that she now needs rods and screws pit in to stabilise her spine. She also has a pain pump administering medication directly onto her spinal cord inserted.

She is an intelligent hard working little girl who has made up all her time in school and is about to go to high school.

Update August 2007

I just want to thank all of you at Post Pals and ask if you would put a wee message and one of these photos on Megan’s site for a wee while longer as there are so many people to thank who all were so very kind to Megan. You all really cheered her up and the hospital stay which was so long was brightened when the postman would come to Megan’s room. He said she was the most popular girl in the hospital. Special thanks to a boy called Jason Norris and his girlfriend who sent loads of books and Megan was thrilled. Also Claire Connor who was writing a lot in Megan’s last few weeks.

Megan developed autonomic neuropathy as a complication of her advanced syringobulba. Her brainstem involvement was causing everything to shut down and the messages from brain to heart, respiratory systems etc were not correct. There were times when her beats per minute were the usual 115 and then they’d plummet to 66 and then race to 133. She developed severe swallowing problems around December and her stomach was no longer absorbing anything. She couldn’t take anything enterally, even meds, and all had to be administered through a central line to her heart. Her intestines bowel and gall bladder were also not functioning properly and the peristaltic motion was not happening. This caused great difficulty with her sitting up and she eventually couldn’t do that. Her brainstem was really stuck down and tethered and her spine was deteriorating rapidly. Unfortunately 2 years ago when we found the specialists in Liverpool the damage had already been done here and the csf had been locked inside the complete spinal cord all the way to the brain. Our doctor in Liverpool managed to do the surgery Dr. Frim recommended and probably gave her these last 2 years but he couldn’t reverse the damage that this awful condition can cause.

In her weakened state in May, Megan got silent pneumonia but managed to rally back. Even being stuck in bed she managed to make the best of any good spells she got. She was very close to some of her nurses and spent time chatting and teasing them. We knew we needed to get her home and luckily managed by air ambulance. She got to spend time with her friends and family doing nails, chatting, girly quizzes and movie nights in her room. This was lovely but also heartbreaking.

She died on June 24 with us all around her in her little pink room playing music and holding her hand. At her celebration of life ceremony we had her favourite music, poems, and friends sharing memories and then we let go lots of pink and red balloons. She would’ve liked that. So many people spoke of her bravery and how she had touched their lives. We have scattered her ashes on the beach with flowers and balloons and now we are supposed to go on and try to live without her which is impossible.

Megan getting ready to go shopping with friends.

Megan and her mum.

Update 25th June 2007

Just a quick note to let you know that Megan passed away at 8.17 yesterday.

We greatly appreciate all the gifts and kind thoughts sent to her by everyone.

Many thanks

Nigel (Dad)

Update 31st May 2007

Just a wee note to let you know that we finally got Megan home last week.

Its been a difficult week getting all the equipment, nursing and medical supplies in place but well worth it to give her some quality time with her friends at home.

We can’t thank all the people out there who were so thoughtful and kind enough to send Megs those special little (and some not so little) packages. It really cheered her up, particularly on the down days when it seemed that getting home was never going to happen.

Thank you to everyone.

We now plan to make the most of whatever time Megs has left in the more relaxed and comfortable environment of her own home.

Update 19th April 2007

No sign yet of Meg getting out of hospital. It will probably be another 4 weeks, we hope.

Update 4th April 2007

We are sorry to report that Meg is still in Alderhey. The consultant cancelled the air ambulance home 24 hours before we were due to fly. He wasn’t happy with her level of pain. They are now introducing local anaesthetic into her baclofen pump to numb the pain in her legs. The first 2 trials didn’t work and trial number 3 is tomorrow. The plan is to come home 17th April but we are not confident it will happen as progress is slow.

Please convey our thanks to everyone who sent Meg such lovely gifts. They were very much appreciated and helped to give Meg a lift at a very difficult time.

Update 30th January 2007

Megan is still in Alderhey. Not doing too good. The operation to remove the femoral head has led to calcification in the tissue around the bone and is causing a lot of pain.

Coincidentally her bowel stopped working while she was in hospital and there appears no obvious reason. No bacteria and no obstructions in her bowel have been found.

The believe it to be a form of autonomic neuropathy where the nerves have been damaged and are either not working at all or inconsistently working.

She had to have a broviac central line put in and is now iv fed.

We are now waiting for a package of palliative care to be organised to enable us to bring her home.

As she can’t sit up it will have to be by air ambulance again.

Wish I had something more positive to say but she’s having a very difficult time.

Update 21st November 2006

Megan is currently in the neurosurgical unit at Alderhey hospital in Liverpool. She has been there since last Monday and will be there for a while. Her symptoms have worsened in recent months. The consultants are carrying out a number of tests and consulting with other specialities to try and find a way forward in her treatment.

Update 6th November 2006

Megan’s system is shutting down and causing problems with her breathing, body temperature control, and even digestion. Swallowing is difficult and she is having eye problems again. Her consultant said there isn’t any fluid around the brainstem so he will need to do a very precarious brain operation. We are just waiting on a theatre date right now – Megan hasn’t been told so please don’t mention it in cards.

As always thanks for all the lovely cards she receives we are very grateful.

Update 27th October 2006

I just wanted to thank everyone who has sent cards and wee surprises to Megan. We really appreciate all the lovely cards etc. and want to make sure we thank you all. We will try to send extra thank you’s to those whose addresses we have.

Update 19th May 2006

Megan is planning on her own wee thank you notes but wanted me to thank everyone. So to Kat, Julie, Alan, Becky and Caroline – loads of hugs from Megan.

Megan has had some sleepless nights and is nervous about more surgery and having these parcels arrive with all your lovely good wishes really picked her up.