Does anyone here have a young child with SCT?

[ccollette]

I have been doing some scouring of the boards and can't seem to find anyone here who has a young child with a SCT, and maybe I am missing something. Not to say the adult patients' stories aren't helpful, they are. I guess I am hoping to connect with someone who understands all the additional issues that come along with having a young child in this scenario. My daughter is five. She was diagnosed at the age of 4. She just started kindergarten 2 weeks ago and all I can do is hope she gets to finish out the year without any problems and/or interruptions. She is very happy to go to school.
I have so much more to share, but not sure if this is the right place.

Please let me know~

[Linda51]

Hi ccollette.

We do have parents that comes to the website but I don't think they post on the caregivers forum that much. If you go to the kids page you will find stories from other parents and at some point in time you may want to write your child's story as well. If you are wanting to talk to other parents you might want to email parents from the kids page or you can send me your email address and I would be happy to connect you with other parents.

Also feel free to just post on this forum or the main forum and I am sure other parents will see your thread and respond to you. I am sorry your little girl had to go through this but you know kids are amazing and seem to go through these things like it nothing. I hope her first year in Kindergarten goes great.

You can email me @ [e-mail]

~Linda

[ccollette]

Thank you, Linda~

I appreciate your response. Maybe I can garner the way to getting more parents of the younger crowd out here and talking. I have read all the stories on the kids page, and have thought about sending in her story. Maybe eventhough I see us on the cusp, it will still be beneficial to someone to see her story thus far. I will do that!

thank you for sharing your email with me. I would love to reach out to you if you have the time. I feel like it will give me a modicum of release to connect and share with all of you. It is a thread that is not shared with many, but a thread that is strong. We can all leverage from one another as we each experience life in our own way, through our own eyes and sometimes all it takes is another set of eyes to shine light on something to create volumes of support.

[kimsmom]

Hi. I also have a five year old daughter in kindergarten with a SCT. Our daughter was diagnosed Jan. 2007. You're right not many parents post but I try to read the board every month or so and post when I have something to share. I'd be happy to correspond with you either through the board or personal email. My name is Denise and my email is [e-mail]. I hope your daughter is doing well and that we can lean on each other.
Take care,
Denise

[JenniferWyatts mom]

Hi,
It is true not many parents post, just shows how busy young children can keep you.
My son Wyatt is 3, and has a SCT. Latley I really feel the need to find support too.
I would love to chat, so please feel free to e mail me anytime.
[e-mail]

[Linda51]

Hi Parents,

Just to give you some hope for your kids on Friday evening I got a wonderful phone call from a girl in Texas who was diagnose and had surgery for a Thorastic (sp) astrocytoma when she was 3 years old she is now 17 years old an a Junior in High School. She's a cheerleader, sings and goes to the gym and swims. She also been through a spinal fusion when she was 10. I have ask her to write her story or her parents to write it up and she promise me she would.

I'm saying all of this to give you encouragement and for to know kids can come through this and have a bright future. Every case is different with different outcomes but I had to share this with you because Tori was just an amazing child and she has such a great spirit about her. It amazing what kids can go through and be so strong.

Wishing all of you many blessings!

~Linda

[stargirl65]

My daughter was diagnosed at age 8 in 2005. Had sugery, rehab, and back to school. A few months later got kyphosis and neck pain. In Milwaukee brace for a while. Then developed neurogenic spastic bladder later. Tumor growing in NEW area. Went on chemo for 15 months. Of chemo now for 2 years.
She is now 13. Has her first crush. Was in the school play. She plays lacrosse and field hockey. No big problems overall.
She has complication of her right leg (one paralyzed during surgery but now OK) is growing slower than her left. It is shorter and less bulky. Her foot is smaller and she has an insert. She has neck pain from surgery often, but treated easily with tylenol.
She is overall very happy and does not think of her tumor daily. We still get MRIs every 3 months.

[smarcella]

Hi ccolette: (Hi Linda!!!)

I have to admit - I only come on here once in awhile... life is hectic as a single mom working full time with two little kids. My daughter Jenna is one of the kids on the SCTA kids page. She is now 7.5! She was diagnosed in March '04 has been in remission since June 2006 - so almost 4 years now!

She goes for MRIs every 6 months now, might change to yearly after this next visit... Her main issue is left-sided hemiplegia and sympathetic nerve issues (eye getting more droopy covering the pupil, temperature regulation (feels like she has 105 degree fever to the touch when she doesn't, chest pain, and heart palpitations/murmur. She was diagnosed with scoliosis as well but it is not too serious yet and they monitor her yearly. She used to wear a DAFO but she no longer needs any leg support, just wears an orthotic now.

She has always been able to emotionally deal with her disability at school - until this year. Kids would ask her about her braces, restriction braces, her scars, not being able to use her hand, etc. but they'd ask and then go about their business. She entered a public school this past year in 1st grade and the kids have bullied and teased her. Working with the counselor and teacher to change this but obviously it still affects her emotionally. She is upset that no one she knows, in her family - in her class - in her school, has a hand that doesn't work. We try to boost her self-esteem and tell her look how far she has come and that it could be worse but also she focuses on is the disability. I joined another support group recently for parents with kids with hemiplegia (hemikids).

I have always been thankful for this web site to seek advice from others who have gone through this horrible ordeal and am always willing to offer support to others if I can be of assistance.

If there is anyone in the Baltimore-DC area who has a child around Jenna's age (7) with a similar disability, I think it would be great if we could meet sometime. Please contact me.

Shelly
Mother to Johnny (5) and to Jenna (7), Intramedullary Fibrillary Astrocytoma C3-T2 in 2004. In remission as of 6/06!

[lisarosesmum]

Hi there. My name is Lisa, we live in Melbourne, Australia. My 11 year old daughter was diagnosed with an intramedullary spinal cord tumour in March 2013. She underwent a laminoplasty for biopsy - histology showed pilocytic astrocytoma WHO grade one. A resection was not possible at the time of biopsy as it was considered too dangerous and her spinal cord was extremely angry and swollen. There was also a large syrinx above and below the lesion. Along with this scoliosis and since the surgery kyphosis too. They put her in a miami brace which she wears every day for the kyphosis. She will eventually need rods put into her back for the scoliosis/kyphosis Rose started on Carboplatin and Vincristine but experienced tumour growth after 10 weeks of that type of chemo. We switched to TPCV protocol. After one cycle an MRI showed her tumour had shrunk a little. After the second cycle the tumour was stable but her syrinx below the tumour had enlarged and she had been on dexamethasone for 6 months so it was decided another surgery was required. Rose underwent a laminoplasty/partial laminectoimy and approx 50% of her tumour was de-bulked. Rose is recovering from her second surgery and will re-start TPCV cehmo in 4 weeks time. We are hoping to wean her off the steroids as she has gained 20kg while being on steroids. My beautiful young daughter has been through hell this year, it was supposed to be such a happy year - grade 6 in primary school and gradutaion at the end of the year. She is so brave and continues to remain positive. Such an amazing young lady who has had to grow up way too fast because of all this. I would love to meet another Mum who lives in melbourne, australia who is going through a similar situation. Also love chatting online to all of you beautiful people from all over the world, so nice to be in the company of others who really understand what it's like.

[Tiffany Ahlbach]

  My name is Tiffany Ahlbach. My son Lucas is 8 years old and on March 8, 2013 he was diagnosed with a brain stem cyst and spinal cord ganglioglioma from his C1 -C5. His only symptom at the time was severe neck pain at night. Looking back we now see he had balance issues which we attributed to being a rough and tumble boy, the closer we got to diagnosis he had leg numbness and a little vomiting. After diagnosis he was sent to Lucille Packard Children's Hospital at Stanford in Palo Alto,Ca. He underwent surgery by Dr. Michael Edwards. He had a occipital craniotomy and a C1 laminectomy with a C2 through C5 osteoplastic laminotomy with aggressive near total resection of intramedullary and extramedullary spinal cord tumor. Due to the location of the tumor and that the tumor had pushed through the pia mater layer that surrounds the spinal cord, a part of it had to be left behind or risk left side paralysis. The cyst was also decompressed. Luckily the tumor was benign! Lucas has had left side weakness in his arm and leg which is coming back quickly with occupational and physical therapy. We have had 2 follow up MRI's and things still look good! The cyst cavity had even shrunk a little. Lucas as been a trooper through the whole ordeal and has kept a positive attitude! It is amazing to see a child's resilience!! 

  Its has been very difficult because kids with sct are pretty rare so feeling alone happens to me a lot! I didn't realize until lately how close to the surface my emotions are even after 7 months! If anyone wants to email me my address is [e-mail]. I am throwing out good thoughts to everyone who is in this rare group of extraordinary kids!                                                                                                                                                                    
  
                                                                                                                                                    Tiffany