blondieboo
Earning My Ears
- Joined
- Dec 29, 2014
- Messages
- 29
It is finally official! Bella's MAW trip to Disney was officially approved! 
First a little about how we arrived at planning a MAW trip. My 3 year old daughter was repeatedly misdiagnosed by her pediatrician as having enlarged lymph nodes from a viral infection, having an ear infection, etc. After several rounds of antibiotics and "let's wait and see" we insisted on seeing a specialist and they set up an appointment for us over a month later after saying "Don't be surprised if they laugh you out of the office." We were reassured it was nothing to worry about and it definitely wasn't cancer based on the blood work. Little did I know. When I took my daughter back again because she had developed a rash we saw a different doctor who was very concerned about the lump she had and fast tracked our appointment with the ENT.
The ENT was awesome and set up all kinds of testing - all kinds of blood work, X-ray of chest, CT scan, biopsy, appointment with oncologist, etc to cover all the bases. She wanted to go ahead and get us on the books just in case. She was very careful not to tell us her opinion. I later found out she thought it was cat scratch fever. Too bad she was wrong. I had been doing research and was certain she had cancer. Everyone told me I was overreacting. The day of the CT scan we were terrified seeing our baby be put to sleep for the scan. We had an appointment in the pediatric oncology office shortly after. As my daughter was being weighed the ENT called me and wanted to know where we were. She told me to stay there.....that the CT was way worse than what she expected and she was on her way to talk to us. I started crying immediately because her tone confirmed what I suspected the whole time.
We were taken into a room, shown some images and told for sure our daughter had cancer. The CT happened to show her lungs and there were spots there also. They knew it was cancer but weren't sure what kind. They wanted to admit her and put her right back under anesthesia to biopsy the mass unless it could be removed, insert a port for chemo, do a lumbar puncture, check her eye for damage and who knows what else. Through tears we agreed to whatever they said.... Who knows what a port or lumbar puncture even is?
Many hours later we found out the mass surrounded her carotid artery so was inoperable. The Dr. Suspected Rhabdomyosarcoma. They kept us in the hospital pending the biopsy results. At one point the Dr. Said radiation wanted an MRI of her head to schedule future radiation. Later I found out they were actually looking to see if the tumor had crossed the barrier to her brain in case they needed to do emergency radiation right then.
Many morphine filled days and many tests later we were told it was indeed stage 4 Rhabdomyosarcoma with metastasis to her lungs and bone marrow with 2 suspicious spots on 2 bones and they wanted to start chemotherapy right away. It was an extremely aggressive year long protocol with 6 weeks of radiation. I asked if we could go home for the weekend and start on Monday. I was told a couple of days wouldn't make a difference and to go and enjoy it.
Our Dr's didn't really give us any statistics regarding outcome and after reading research papers and seeing the grim statistics I understand why. When pushed to give an answer we were given 20% chance of living for five years which matched what I had read. 20% chance not of cure, but of life for five years. The odds of relapse are equally dismal.
We had discussed taking Isabella to Disney after treatment ended but it was a wide open question if she would even make it through treatment. Family members asked if we had contacted make a wish and I wasn't ready for that yet.
We started treatment in May. In November our medical team referred is to MAW and today we received the official word that her wish was approved. Bella is still in treatment and has months of chemo followed by radiation before her treatment will be considered complete. We are hoping to go to Disney in September, October or November which gives us something to look forward to after treatment.
We are supposed to hear from the corporate office next week for the details and logistics. We did ask to bring 2 extra people at their own expense and to extend our trip so I'm waiting impatiently for the answers to those requests!
First a little about how we arrived at planning a MAW trip. My 3 year old daughter was repeatedly misdiagnosed by her pediatrician as having enlarged lymph nodes from a viral infection, having an ear infection, etc. After several rounds of antibiotics and "let's wait and see" we insisted on seeing a specialist and they set up an appointment for us over a month later after saying "Don't be surprised if they laugh you out of the office." We were reassured it was nothing to worry about and it definitely wasn't cancer based on the blood work. Little did I know. When I took my daughter back again because she had developed a rash we saw a different doctor who was very concerned about the lump she had and fast tracked our appointment with the ENT.
The ENT was awesome and set up all kinds of testing - all kinds of blood work, X-ray of chest, CT scan, biopsy, appointment with oncologist, etc to cover all the bases. She wanted to go ahead and get us on the books just in case. She was very careful not to tell us her opinion. I later found out she thought it was cat scratch fever. Too bad she was wrong. I had been doing research and was certain she had cancer. Everyone told me I was overreacting. The day of the CT scan we were terrified seeing our baby be put to sleep for the scan. We had an appointment in the pediatric oncology office shortly after. As my daughter was being weighed the ENT called me and wanted to know where we were. She told me to stay there.....that the CT was way worse than what she expected and she was on her way to talk to us. I started crying immediately because her tone confirmed what I suspected the whole time.
We were taken into a room, shown some images and told for sure our daughter had cancer. The CT happened to show her lungs and there were spots there also. They knew it was cancer but weren't sure what kind. They wanted to admit her and put her right back under anesthesia to biopsy the mass unless it could be removed, insert a port for chemo, do a lumbar puncture, check her eye for damage and who knows what else. Through tears we agreed to whatever they said.... Who knows what a port or lumbar puncture even is?
Many hours later we found out the mass surrounded her carotid artery so was inoperable. The Dr. Suspected Rhabdomyosarcoma. They kept us in the hospital pending the biopsy results. At one point the Dr. Said radiation wanted an MRI of her head to schedule future radiation. Later I found out they were actually looking to see if the tumor had crossed the barrier to her brain in case they needed to do emergency radiation right then.
Many morphine filled days and many tests later we were told it was indeed stage 4 Rhabdomyosarcoma with metastasis to her lungs and bone marrow with 2 suspicious spots on 2 bones and they wanted to start chemotherapy right away. It was an extremely aggressive year long protocol with 6 weeks of radiation. I asked if we could go home for the weekend and start on Monday. I was told a couple of days wouldn't make a difference and to go and enjoy it.
Our Dr's didn't really give us any statistics regarding outcome and after reading research papers and seeing the grim statistics I understand why. When pushed to give an answer we were given 20% chance of living for five years which matched what I had read. 20% chance not of cure, but of life for five years. The odds of relapse are equally dismal.
We had discussed taking Isabella to Disney after treatment ended but it was a wide open question if she would even make it through treatment. Family members asked if we had contacted make a wish and I wasn't ready for that yet.
We started treatment in May. In November our medical team referred is to MAW and today we received the official word that her wish was approved. Bella is still in treatment and has months of chemo followed by radiation before her treatment will be considered complete. We are hoping to go to Disney in September, October or November which gives us something to look forward to after treatment.
We are supposed to hear from the corporate office next week for the details and logistics. We did ask to bring 2 extra people at their own expense and to extend our trip so I'm waiting impatiently for the answers to those requests!
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