6 year old son diagnosed with embryonal rhabdomyasarcoma

Hey everyone,

 My little man was diagnosed at the end of August'2008 with embryonal rhabdomyasarcoma. He was actually playing basketball at the YMCA, and when the coach bounced the ball to him during warm-up, it caught him in the side of the face. It didn't hurt him, but when he turned around to give me a thumbs up, the entire right side of his neck and jaw was swollen. His head looked lop-sided.

After 2 weeks in the hospital, with doctors looking for everything BUT what might actually be wrong with him...they decided to do an MRI (why it took 2 weeks of bumbling around and asking me the same questions 102 times, I don't know..."No, he was not scratched by a cat"). The swelling was his lymphnodes. The cancer wasn't in his blood, marrow, or bone.

They found a 5 cm tumor stretching from behind his eye, to the top of his neck. It looked alot bigger on the scans, but he's 6, so....

They originally thought it was alveolar, but the day he was supposed to start his treatment as part of a study group, the doctor walked in and said, "I have bad news". My heart dropped (this was week 3 of barely eating, plus depression and panic). He continued, "you have to sign all new paperwork, because we realized it's the less aggressive embryonal strain".

Some of these docs sure know how to speak to people. My son wasn't considered part of any study anymore.

2 months after chemotherapy started, he was scanned and the tumor was completely gone. He was then to start 28 days of radiation therapy. My mother was dead-set against it, but I'm pulling all of the punches to get this thing. Roughly a month after radiation, he was scanned again, and it's still gone. He's got 5 more months of chemotherapy.

I'm thankful, trust me, but is rhabdo supposed to disappear that quick? I've heard it's very responsive to chemotherapy, but even the docs were blown away that it completely disappeared after 2 months. The side of his face shrank within a week of starting the chemo. 

Has anyone else had a similar experience. Of course being a single parent, if he as much as sneezes now, I get nervous.

 

My 7 year old daughter was diagnosed with Rhabdomyosarcoma in April 2009, and we have just completed our 7th Chemo treatment. Can you please give me more detailed information about your experience? The tumor is in her soft palate area at the top of her throat and is also embryonal. After the first chemo treatment it shrunk considerably, and now it is not even visible from the mouth. When did the doctors rescan your son? We are supposed to start radiation in July, can you tell me your experience? Where did he get treated? How is he doing today? miriam in Little River, S.C.

I am from Australia. My 7yr old son was diagnosed May 09 with Nasalpharangeal embryonic rhabdomyosarcoma. His treatment plan is 36 weeks of Chemo combined with Radiotherapy. His Chemo is weekly of Vincristine and then every 3rd week Actonamyosin D and Cyclophosphamide, also known as VAC. Due to the location it is inoperable.

At week 4 he commenced 28 days of Intensive Radiotherapy. At week 3 of Radiotherapy he started to struggle as he was also continuing Chemo. By week 5 he was admitted to hospital with severe Thrush and Mucositis due to both Chemo and Radiotherapy. He is also a very stubborn 7 year old that hasn't liked taking medicine which I guess is his way of staying in control. The last week of Radiotherapy caused very severe discoloration of his skin and blistering around the ear. He has been unable to eat and drink due to a combination of Radiotherapy and Chemo. He completed his last Radiotherapy last Thursday (Yeah!!!).The Radiotherapy still continues to cause terrible pain and they advised this usually ceases 7-10 after last Radiotherapy.

He is currently in hospital and will remain for another week or so until he is able to eat/drink. He is not on a nasogastric feed due to the tumour and activity around his nasal area so is being fed via IV.

What a heartbreaking experience this is for a parent. I cannot possible understand what goes through his mind. I know that in order to rid this tumor he must receive intensive treatment which in turn rid this tumour. What a road not only he but we must travel to get there. I hope that your daughter is coping with her treatment. I guess all children have their own experience based on their diagnosis. Given how rare these tumours are it is difficult to discuss with other parents/children. I hope this helps. I do not mean to focus on the negative ( I could do that on long term side effects?!?) but wanted to be honest with where we are at. My son is due for scans 4 weeks post Radiontherapy and then 3 monthly for the next 6 months. Good luck!!

I was diagnosed with Rhabdomyasarcoma when I was about 13 years old, and I am now 20. Reading these stories makes me sad. I know it is hard specially when you are a single parent (as was my mother), but it does not have to be so hard for the child.  Continuously let your children know that everything is going to be o.k.  Trust me, they can never hear that enough. Also try to help them find a positive outlook. I know it can be hard, but being optimistic helped me to not ever get sick outside of the hospital.  I too had vincristine weekly, and the VAC every three weeks which I had to stay over night in the hospital. I wish that I can help more! If your child is really down and out and you would like them to speak to them as a survivor feel free to contact me!