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Confused


#1
  • after we find out whether this horrible disease is any where else that we pray dear sweet Jesus here’s our prayers and it isn’t we will homely know tomorrow he will have surgery, have the port placed and the start Chemo with Ifosfamide and Doxorabicin plus radiation waiting on radiology to tell us how hard they will go with that - Sloan wants to be very aggressive so of course we know the consequences of the chemo and the other medications he will have to be on for his organs - we are just beyond nervous - I see a lot of posts and discussions about different trials and treatments it’s so hard to understand it all - ugh !!!

#2

Our prayers are with all of you. The "not knowing about the future" element has changed our lives. We focus on only the important things now and say "yes" to our son more often. Laugh more and love 100% percent of the time.


#3

Take one day at a time. Don't focus too much on what may happen. It will feed unnecessary anxiety. Focus on what you can do to make Frankie's journey easier.


#4

Where is it located? Is it Synovial? Our son Ben has it in his right ankle. He has been through 5 rounds of chemotherapy. Doxorubicin and ifosfamide. He just has surgery to remove what was thought to be a nodule on his right lung. We are waiting for the pathologist report to come back. The waiting is so hard. Ben was sick quite a bit through the chemotherapy. He did bounce back in between sessions. He lost all his hair. He kept a good spirit about him. He told us from the beginning, "we just need to Pray Harder" so, we are!!

Almost 2 years ago, Ben began complaining that I hurt him when I put on his shoe. The first couple of times I thought nothing of it. When it just continued to hurt, I told his pediatrician. She couldn't find anything. It continued to hurt. She did an x-Ray. Nothing. She sent us to a "specialist". He put Ben in a cast, a boot, took an MRI. Nothing. He then sent us to a rheumatologist specialist, who treated Ben for over 8 months for arthritis. He told us the arthritis is going into Bens left knee. Which proved to be false! No meds helped.

A podiatrist friend looked at Ben's foot, Ben's records and discussed Ben with the reumatologist. He told this "specialist" that he needed to do a correct MRI, or it would cripple Ben. There was a disagreement between the two. However, the correct MRI was done ( on a 1mm slice) and there it was a synovial cyst. Until the pathologist report came back to show cancer. So, here we are. Ben is finished with chemo. Waiting on pathologists report and deciding best next move. If you have any questions or if I can help you in any way, please contact me.

Ben's only worry, to quote him, is " I don't worry about me. I worry about the other children and babies suffering with what I have. They shouldn't be going through this"

We will all be Praying Harder for your Frankie and all the other children and babies going through what Ben is going through. Please feel free to contact us. Blessings for Ben Leslie on Facebook.


#5

Yes my Grandson's pathology came back as Synovial Cancer it was a tumor on his thigh that was removed... We found out good news today that this has NOT spread to any other area of his body ~ God is good !!! I picked up scans and over nighted them to Sloan Kettering we are waiting for the dr. there to call us. He will need another operations for them to take more of the tissue from site at that time a port will be placed and he will start his treatment. Sloan told us they are heavy hitters with the chemo so they kill any possible cells so we can have a good prognoses .. My heart goes out to everyone as I read your different stories. This disease is a nightmare !! Is anyone else going to Sloan Kettering ???


#6

Great news Frankie's grandma! To find out who goes to Sloan Kettering, you may want to start another discussion and ask in the title. Who is his pediatric oncologist there?


#7

It's good to hear that the cancer is contained. My son's story has been similar --- an oops! surgery, followed by another surgery to get clear margins (but no chemo or radiation), and now scans every 3 months for years to come. Many prayers of thanks that things were found early for all of you. :)



Elodie Espesset said:

Great news Frankie's grandma! To find out who goes to Sloan Kettering, you may want to start another discussion and ask in the title. Who is his pediatric oncologist there?