I hope I am doing this right. We just found this site. I wish I had found it much earlier!!
My daughter Gracie is 3 years old. She is currently battling Wilms Tumors. My daughter was born with a rare syndrome, Beckwith Wiedemann Syndrome. She has been under constant medical supervision for numorous reasons since birth. We still never thought she would have to face this, even though the chance was always there. In May during a routine ultrasound (she has them done every 3 months to monitor for this type of cancer) they found 2 tumors...one was 2cm and one was 4cm.
We immediately met with the top doc in the country for these types of tumors. Luckily, the hospital he works out of is only 2 hours away....and he wanted our case as this was his specialty. It was decided to begin with 6 rounds of chemo followed by a nephrectomy. They were hoping at the time to shrink the tumors as much as possible to save her kidney. She will be at risk for these tumors until she is 8. Luckily, after the 6 rounds there was a great deal of shrinking. We were able to go forward with surgery. After her surgery we have continued with chemo. But because of the make up of her tumors we had to increase the duration and the amount.
We have had one scare recently. The believe that she has a benign rest on the same kidney now. But for now we are continueing with protocol and hoping and praying it doesn't turn into something further down the road. We have 2 more rounds to go followed by her ct and mri to get her in the clear.
My kids are so excited for this trip. They need this. I also have a 7 year old son and a 22 month old daughter. Oh and did I mention I'm 31 weeks preggo!! We found out a month before Gracie's diagnosis.
This trip has was planned pretty quickly because of my travel restrictions and not wanting to travel with a newborn. Because of all this I am very unprepared!! I dont really think the kids will notice though. We will be staying at GKTW. Any suggestions???
My daughter Gracie is 3 years old. She is currently battling Wilms Tumors. My daughter was born with a rare syndrome, Beckwith Wiedemann Syndrome. She has been under constant medical supervision for numorous reasons since birth. We still never thought she would have to face this, even though the chance was always there. In May during a routine ultrasound (she has them done every 3 months to monitor for this type of cancer) they found 2 tumors...one was 2cm and one was 4cm.
We immediately met with the top doc in the country for these types of tumors. Luckily, the hospital he works out of is only 2 hours away....and he wanted our case as this was his specialty. It was decided to begin with 6 rounds of chemo followed by a nephrectomy. They were hoping at the time to shrink the tumors as much as possible to save her kidney. She will be at risk for these tumors until she is 8. Luckily, after the 6 rounds there was a great deal of shrinking. We were able to go forward with surgery. After her surgery we have continued with chemo. But because of the make up of her tumors we had to increase the duration and the amount.
We have had one scare recently. The believe that she has a benign rest on the same kidney now. But for now we are continueing with protocol and hoping and praying it doesn't turn into something further down the road. We have 2 more rounds to go followed by her ct and mri to get her in the clear.
My kids are so excited for this trip. They need this. I also have a 7 year old son and a 22 month old daughter. Oh and did I mention I'm 31 weeks preggo!! We found out a month before Gracie's diagnosis.
This trip has was planned pretty quickly because of my travel restrictions and not wanting to travel with a newborn. Because of all this I am very unprepared!! I dont really think the kids will notice though. We will be staying at GKTW. Any suggestions???
