9 replies to this topic

[aimeejoy]

Hi there

Just wanted to introduce myself, though it looks like this board isn't used a lot.

My now two and a half year old daughter was diagnosed with a C2-T5 tumour within her spinal cord in april 09 (at 14 months old). She has had several surgeries and the last scan looked "clear" although we are due for another scan in a few weeks. She also had to have C2-T5 laminectomies so they had access. Now she is doing quite well and seems to have recovered from all the ops and chemo and the problems that come with that.

She is fairly independent but I am starting to struggle a bit with the day to day needs, and although we have a lot of support, no one truly understands. Also I am a physiotherapist so it is often assummed that we are doing fine because I know about this stuff!

Greer's breathing muscles are weak, but now we only notice it when she gets a respiratory infection. Her right arm has no hand function, but she can use the arm a bit. Her left hand is better but weak. And she has no pain sensation in the arms, hot/cold is dubious and she often uses her face to feel things. She can walk a little with a walker but she doesn't like it. She can crawl well though her right arm often gives way and she bangs her head on the ground. She can pull to stand and cruise at the couch, but broke her leg earlier this year doing this. Bladder and bowel is a work in progress - not sure if she has full sensation as toilet training is very hit and miss.She had a NG tube as well for 8 months which has been out about a month.

She is fairly independent but still needs lots of help with eating, dressing, playing etc and is now showing us some delightful two year old behaviour! She still isn't sleeping all night so I am very tired. Its been about 18 months since diagnosis now and I think its really only just starting to affect me along with the tiredness, so can be an unpleasant mother and wife at times! We still don't know what the future holds for Greer either which I am struggling with.

Anyway, would love to chat with some other parents with young children.

[SSG.Bridges]

Hey there and welcome.. This is a wonderful site you should be able to find what you are looking for.. I am glad that your little girl is doing better sounds like she had a rough start but she sounds like a fighter... Best wishes

[jenny407]

aimeejoy: Welcome to the forum. You'll find a lot of support here.
Jenny

[pinkcloud]

[quote name='aimeejoy' timestamp='1284869501' post='183394']
Hi there

Aimmejoy

Hi and welcome, I am still a newbie but am finding meself around the site and its cool. First and foremost I shall say that I feel blessed, as it is I with sci and not my children, I prefer to take this than have my children do so. My heart is with you. I shall not for even one second pretend that I understand what you are going thorough, I dont.

I have a few close friends working in medicine and yes, it often is assumed that them can cope ok. Actually, no way is this true - I repeat myself here but there are reasons why medical people dont work with relatives/close friends. When close emotions are involved, blindness kicks in. Also you know a lot of medical stuff us without that knowledge can choose to ignore and sometimes thats a blessing.

I dont go on the carers forum much yet do speak with a few on here and boy, are they supportive and wise.

I wish your family my sincerest warm hopes and wishes of well health. Welcome to a place where your 'allowed' to feel human.

[millsonwheels]

Hi there Aimmejoy,
this is a really great site. I have only been on it a week myself and it feels good to log on and know that everyone cares about how you feel.
I'm the same as pinkcloud and ditto to everything that she has said.

One of my daughters works for Respite and Recreation here in Australia and she loves helping out mums with children with a disability. Look for Respite places and support groups like Early Intervention where there are mums like yourself with children like your little girl.

I will support you with lots of prayers and good thoughts and hope that you find the help you need asap.

Keep well yourself

[Tetracyclone]

aimeejoy-

Another welcome.
It has been 30 years since I cared for a 2 year old, who was able-bodied. Just any 2 yr old is quite a handful, so i sympathize to that extent.

Be patient and more parents will respond. They are terribly busy and don't log on often.

Regards.

[aimeejoy]

Thanks everyone

[tarryn]

HI there
Im an OT from south africa, so Im not in your position, but I would love to offer any support, or even just to chat about stimulating your little girls development. From what you said, she seems to be doing really well despite the setbacks she has had in her health and development. Well done to you!
I understand the fatigue, it must be exhausting. Find ways to take time out... Does she go to a school/creche? It might be a good idea to find a day mother or preschool that will accept her, it will be good for her development and may help with the motivation to walk and use the toilet, and it will give you some time off. even if it for only a few hours a day.
Would love to chat. keep doing what you are doing, you are a special mom

[Lucydog]

I have 4 children ages 7, 3, 2 and 1. our 2 yr old has gross developmental delay for some unknown reason but is coming along slowly. If you want to chat anytime let me know.
cheers and welcome
L

[123]

Hi Aimeejoy,

I am not a parent but I am a spinal cord tumour sufferer and I fully understand your frustration. My problems began when I was 26 and suddenly found overnight that I had difficulty walking. I deteriorated very quickly and my symptoms progressed to pins and needles, loss of balance/control of my legs and severe pain in my chest and ribs. After 4 months I could barely stand and paid for a private consultation with a neurologist, who sent me for a MRI. In short, the scan revealed a large tumour on my spinal cord that was compressing my left lung and also growing into my aorta. I was admitted almost immediately for surgery and underwent a T3-6 laminectomy, costotransversectomy and tumour re-section. Two years on, I'm still a long way from recovery. I spent the first year completely housebound and, for many months, was even unable to wash or dress myself properly. It has affected every bodily function and has left me feeling crippled internally, despite the fact that I now look 'normal'. It is a very rare condition and information is scarce; even amongst the medical profession. People on the outside don't understand the complexity of the spinal cord. As far as they're concerned the tumour has been excised and, therefore, you are 'cured' and should be getting on with your life. It can be very lonely.

On the upside, I have significantly improved since the early days. I am able to walk and take care of my basic needs now and some of the sensation in my legs has returned. I am able to get out of the house at last.

I completely understand your frustration. You can only take each day as it comes. Your daughter is very young and could still go on to make massive improvements. I wish you both well.