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Name: Melissa P
[ Original Post ]
the last few years of our lives have been the hardest. In November 09 my two and a half year old daughter was diagnosed with stage 4 neuroblastoma. IT was devastating. She was completely healthy up until the month before diagnosis. She had loss of appetite, irritability, weight loss, complained of abdominal pain and started limping. I took her into her dr three times over the course of 3 weeks. the second visit he said she may have a flu or bug and prescribed antibiotics. Took the entire dosage and still no improvement. At this point she was miserable. I took her to a different doctor for second opinion and they added two new symptoms, an enlarged liver and a mass on her face. again they sent her home saying it was nothing to be concerned with. follow up with peditrician. I could not accept this and rushed her to ER. We sat there for 8 hrs and they acted as if i was over-reacting. they took urine and blood also xray. They said her white and red blood cells were too low liver enzymes were too high and her xray was clear. they told me to give her clear liquids she must have flu. The next mornong i took her back to pedatrician and pushed the issue SOMETHING IS WRONG WITH MY DAUGHTER!!!! he just looked at her and said "wow." he kept measuring the mass on her face and then stepped out of room. when he came back in moments later he informed me that over the evening the radiologist from the hospital had left a message that the lab tech who read her xray the night before was wrong. They are several things that should be followed up on but he would not say what. He told me to walk across the street to hospital to talk with him. When i got thie they had me admit my daughter and within a few minutes we were being walked upstairs to the pediatric intensive care. At this point i had no clue what was going on. They said to wait for dr to round. The head of PICU finally came in a simply said we have a call out for the oncologist he should be here shortly. I could not believe what he just said. The oncologist came in and said there were several masses presented in her xray and it appears to be some form of cancer but we dont know what kind. they were going to keep her until they could diagnos this was october 29th. by nov 1st they were able to rule out many forms and were waiting for special radioactive dye to perform an MIBG scan. This scan is for diagnosing neuroblastoma. so for three days we wait. nowing we need chemotherapy started right away. So drs put in a broviac heart cathedar to administer chemo. Chemo was started and on Nov 4th the results were Positive for Neuroblastoma. Stage 4 to be exact. The cancer had originated in her abdomine and matastasized to her organs and bone marrow. Her prognosis 10%.Over the next several months she sndured 7 rounds of high dose chemo, surgery, stem cell transplant, radioation, and high dose accutane. following these treatments she had 6 months isolation to allow recovery of immune system. She has started recieving immunizations again. All will need to be repeated due to transplant wiping them out. We are now 1 year 5 months since diagnosis and she is doing very well. Currently still in remission. We are doing some repeat scans right now to confirm. But i find myself terrified everyday that it will come back. Her disease is so advanced that if it does relapse it is either drug trials or quality of life treatment. I have no one i can really talk to about this who understands how it feels to have this lingering fear. Most people are sympathetic but unless you have had to hold your child and think to yourself will this be the last time i get to hug her and tell her i love her you cant really comprehend how hard it is. To add to it all since i have had a new baby and im scared to death that he will have it also. Even though there is less that 1% chance it is always on my mind. I find myself still trying to isolate my children from people and places becasue of the risk of germs since her immunity has yet to completely recover and of course he is an infant. So if anyone has any advice on how to try and cope with these fears please Im very much open to help. Im a single mom of 2. a three and a half year old daughter and 4 month old son. Im 24in sacramento.
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Name: Lisa | Date: Apr 19th, 2013 2:08 PM
There are support groups with other mothers and fathers who know your pain and worry. Look into Sierra Rayn Foundation for information and MDJunction http://www.mdjunction.com/neuroblastoma for support forum. I know because I have a 7 year old that has been fighting the battle for 3 years now. God Bless you & your little ones. 

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