Tears are streaming down my face right now. I just got the latest update on little Stephen. He is back at St. Jude Hospital now. I know there are lots of you who are following his battle with AT/RT brain cancer, and I know you'll want to know this. I am seriously just...I don't even know what I am. The only thing I can think of to say is sick to my stomach. My heart is just aching for them.
They drove back to St. Jude last week. Here's the first update after getting there:
* * *
After our morning MRI and spinal tap, we sat down with our two doctors and went over the results.
They found what UNM-H missed.
There is a mass growing rapidly behind Stephen's tail bone. It was not there in a scan dated December 8th of the same area. The new tumor is almost 5cm by 7cm already, about the size of an egg. It is causing the sciatic pain and pressing on his bladder causing the urination problems as well.
AT/RT is known to grow in the abdomen as well as in the brain. The placement and rate of growth lead the doctors to strongly suspect that it is AT/RT. They also have said that complete surgical resection of it in this area would be very difficult. We will talk to surgeons from LeBonheur tomorrow or Wednesday for more on that. They can also radiate it in order to try to shrink it.
The MRI today also covered his brain. There they found a section in the back of his left ventricle "lighting up". There is some kind of "nodule" there that is causing inflammation of the surrounding brain matter. This "nodule" could either be more tumor that was somehow resistant to radiation or evidence of an infection - possibly the fungus. They can't tell which and there is equal probability. Either one is bad news.
Tomorrow Stephen is scheduled for a CT scan of his body from his chest down to his bottom. This will give us a more detailed look at the mass by his bladder and will show any other smaller tumors that the MRI can't see. It will also give us more information on whether it can be removed.
What does this all mean? That is still to be decided completely. Certainly, he will not be starting chemotherapy. IF the small mass in his brain is infection, chemotherapy would render him unable to fight it. If it's new tumor, then he is beyond the help chemo offers. That goes for the mass below too.
Symptom-wise, Stephen is still in pain but we are controlling it pretty well. He has started to hurt now in the front of his belly on the corresponding side. He is growing more unsteady on his feet and has almost fallen a number of times today as he limps along. We have managed to catch him each time.
He also continues to have problems peeing. St. Jude is very concerned about the huge size of his bladder. We may have to start catheterizing him if he can not go 4 times a day. He is currently managing 2-3 times a day after much trial and error.
Now that we know about it we can actually feel a large bump through his right buttock. I can't believe how we could've missed it. I guess we don't really go around feeling our children's bottoms much for consistency.
Probably the hardest part of the day has been telling our kids this news over Skype and not being there to comfort them in person. That alone is just killing us.
It's still raining in Memphis. Now it's apparently raining in Albuquerque too."
* * *
UGH. This little guy is such a fighter. His whole family is. Let's keep those prayers coming, guys. Send every little bit of faith, hope, and strength that you can.
Also, if you want to send him anything, here is their address at St. Jude.
Stephen Peterson
St. Jude Children's Research Hospital
262 Danny Thomas Place
Memphis, TN 38105
They drove back to St. Jude last week. Here's the first update after getting there:
* * *
After our morning MRI and spinal tap, we sat down with our two doctors and went over the results.
They found what UNM-H missed.
There is a mass growing rapidly behind Stephen's tail bone. It was not there in a scan dated December 8th of the same area. The new tumor is almost 5cm by 7cm already, about the size of an egg. It is causing the sciatic pain and pressing on his bladder causing the urination problems as well.
AT/RT is known to grow in the abdomen as well as in the brain. The placement and rate of growth lead the doctors to strongly suspect that it is AT/RT. They also have said that complete surgical resection of it in this area would be very difficult. We will talk to surgeons from LeBonheur tomorrow or Wednesday for more on that. They can also radiate it in order to try to shrink it.
The MRI today also covered his brain. There they found a section in the back of his left ventricle "lighting up". There is some kind of "nodule" there that is causing inflammation of the surrounding brain matter. This "nodule" could either be more tumor that was somehow resistant to radiation or evidence of an infection - possibly the fungus. They can't tell which and there is equal probability. Either one is bad news.
Tomorrow Stephen is scheduled for a CT scan of his body from his chest down to his bottom. This will give us a more detailed look at the mass by his bladder and will show any other smaller tumors that the MRI can't see. It will also give us more information on whether it can be removed.
What does this all mean? That is still to be decided completely. Certainly, he will not be starting chemotherapy. IF the small mass in his brain is infection, chemotherapy would render him unable to fight it. If it's new tumor, then he is beyond the help chemo offers. That goes for the mass below too.
Symptom-wise, Stephen is still in pain but we are controlling it pretty well. He has started to hurt now in the front of his belly on the corresponding side. He is growing more unsteady on his feet and has almost fallen a number of times today as he limps along. We have managed to catch him each time.
He also continues to have problems peeing. St. Jude is very concerned about the huge size of his bladder. We may have to start catheterizing him if he can not go 4 times a day. He is currently managing 2-3 times a day after much trial and error.
Now that we know about it we can actually feel a large bump through his right buttock. I can't believe how we could've missed it. I guess we don't really go around feeling our children's bottoms much for consistency.
Probably the hardest part of the day has been telling our kids this news over Skype and not being there to comfort them in person. That alone is just killing us.
It's still raining in Memphis. Now it's apparently raining in Albuquerque too."
* * *
UGH. This little guy is such a fighter. His whole family is. Let's keep those prayers coming, guys. Send every little bit of faith, hope, and strength that you can.
Also, if you want to send him anything, here is their address at St. Jude.
Stephen Peterson
St. Jude Children's Research Hospital
262 Danny Thomas Place
Memphis, TN 38105
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5 people leaving some love!:
Oh Natalie... UGH. My eyes are burning with tears. Cancer is bad enough, but to know a sweet little child is enduring all of this pain? Words can't even describe how heart-wrenching that is. Praying for Stephen and the rest of your family. {HUGS}
What does Stephen like as a distraction these days? Any movies or books that you know he would like?
Oh my gosh. I am so very sorry to hear this. Bless his little heart. Been praying for this little guy. May God and the angels above watch over him and bring comfort during this painful and difficult time.
xo~Amanda
Oh no...when I saw your post title, my heart sank. I am so sorry to hear that there is some bad news. I will certainly pray for little Stephen.
I would love to send him a little something - what does he like? You can email me if you want to at heatherlanxton@yahoo.com - thanks!
My heart just aches for Stephen and his family! I can't imagine going through that at such a young age. He's in my thoughts and prayers.
I'm just sick to my stomach. :(
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