We received Emmett's lumbar puncture results today and the test identified no malignant cells! Yay! We were so excited to hear the news. This means that they didn't see tumor cells floating around in his spinal fluid.
Now this isn't concrete evidence that the spot on his spinal cord isn't trying to spread, but it's certainly an encouraging sign. And we'll take any encouragement we can get at this point.
A special thanks to those who have been praying with us!
Monday, July 31, 2017
Sunday, July 30, 2017
Status
We have still not gotten the results from Emmett's LP. We should receive them tomorrow. We did hear from our oncologist this week, however. In advance of getting the LP results, they have already concluded that Emmett does need some type of treatment again. Their rationale is that this small nodule is in the area of his primary tumor, and it's growing. "What else could it be," they ask? The good news is that there ARE three treatment options (all clinical trials), and the side effects are minimal for the first two.
The first option they call "EZH2". This is an oral medication that Emmett would take at home twice a day. It shouldn't impact his function or quality of life. The one downside is that they don't know how much of this drug will cross the blood brain barrier and get to the tumor site. But it has shown some efficacy on some patients. And they've already identified the correct dose level. Emmett would have to check into the clinic once a week on this drug, but otherwise this would be completely outpatient.
The second option is an immunotherapy drug. In essence this drug tries to activate the patient's immune system to fight the tumor. This is an IV drug given once every three weeks. The risk of this drug is that it can potentially unleash the patient's immune system and cause autoimmune problems, though generally just while taking the drug. It may cause inflammation around the tumor site (and other areas) that may make differentiating disease progression vs. inflammation difficult. This would also be outpatient. The correct dose level has also been identified for this drug.
The third option is an "anti-angiogenic" therapy that tries to cut off a tumor's blood supply. This protocol is out of Vienna would use more traditional chemotherapy drugs, but in a different way. It requires the patient to spend a lot of time in the clinic with intrathecal therapy (i.e. brain injections) 5 days a week in the clinic along with other oral drugs as well. So this option would be labor intensive. The upside is that though this protocol uses traditional chemotherapy drugs, it would be a lot less severe than what he got in his prior chemotherapy treatment.
So those are the main treatment options.
The good news is that Emmett's quality of life would be pretty good with all three options, and especially with the first two. And it sounds like Dr. Chi will leave it up to us as to when we would start -- we could begin immediately, or we could wait until we start to see symptoms from the tumor...but she leans towards starting sooner rather than later.
The other good news is that in order to be able to start one of these trials, Emmett's tumor must be at least 1 cm in one dimension. Right now it's only 0.9 cm..and in some strange way, that makes me very happy. I hope Emmett never qualifies these studies. I hope that the spot the doctors are seeing somehow reduces on it's own, or turns out to be inflammation or something else benign. That's what I'll be praying for. And if it turns out that it is tumor, I'll be praying that it's susceptible these treatments.
We continue to count the miracles we've seen on our journey. And there have been so many! We have enjoyed five wonderful, precious, joyous years with this sweet boy since he was diagnosed with a disease that could have taken his life within weeks. Every single day has been a tender mercy from God that will never be taken away from us. Five years, five months, and seven days since Emmett's diagnosis adds up to 1,984 days -- 1,984 miracles we've been blessed with. God has blessed our family so much! And we are so thankful! And will always be!
We fast and pray that the blessings will continue!
The first option they call "EZH2". This is an oral medication that Emmett would take at home twice a day. It shouldn't impact his function or quality of life. The one downside is that they don't know how much of this drug will cross the blood brain barrier and get to the tumor site. But it has shown some efficacy on some patients. And they've already identified the correct dose level. Emmett would have to check into the clinic once a week on this drug, but otherwise this would be completely outpatient.
The second option is an immunotherapy drug. In essence this drug tries to activate the patient's immune system to fight the tumor. This is an IV drug given once every three weeks. The risk of this drug is that it can potentially unleash the patient's immune system and cause autoimmune problems, though generally just while taking the drug. It may cause inflammation around the tumor site (and other areas) that may make differentiating disease progression vs. inflammation difficult. This would also be outpatient. The correct dose level has also been identified for this drug.
The third option is an "anti-angiogenic" therapy that tries to cut off a tumor's blood supply. This protocol is out of Vienna would use more traditional chemotherapy drugs, but in a different way. It requires the patient to spend a lot of time in the clinic with intrathecal therapy (i.e. brain injections) 5 days a week in the clinic along with other oral drugs as well. So this option would be labor intensive. The upside is that though this protocol uses traditional chemotherapy drugs, it would be a lot less severe than what he got in his prior chemotherapy treatment.
So those are the main treatment options.
The good news is that Emmett's quality of life would be pretty good with all three options, and especially with the first two. And it sounds like Dr. Chi will leave it up to us as to when we would start -- we could begin immediately, or we could wait until we start to see symptoms from the tumor...but she leans towards starting sooner rather than later.
The other good news is that in order to be able to start one of these trials, Emmett's tumor must be at least 1 cm in one dimension. Right now it's only 0.9 cm..and in some strange way, that makes me very happy. I hope Emmett never qualifies these studies. I hope that the spot the doctors are seeing somehow reduces on it's own, or turns out to be inflammation or something else benign. That's what I'll be praying for. And if it turns out that it is tumor, I'll be praying that it's susceptible these treatments.
We continue to count the miracles we've seen on our journey. And there have been so many! We have enjoyed five wonderful, precious, joyous years with this sweet boy since he was diagnosed with a disease that could have taken his life within weeks. Every single day has been a tender mercy from God that will never be taken away from us. Five years, five months, and seven days since Emmett's diagnosis adds up to 1,984 days -- 1,984 miracles we've been blessed with. God has blessed our family so much! And we are so thankful! And will always be!
We fast and pray that the blessings will continue!
Thursday, July 13, 2017
LP
Emmett did great on his lumbar puncture today! It was done at UNMH by Dr. Kuttish (sp?). Clayton and Katy did great too.
Afterwards Emmett enjoyed playing with his new (and only) fidget spinner while enjoying pizza. He's wanted a fidget spinner for a long time and finally finished earning the $$ for it last night. We picked it up on the way to the hospital this morning.
We'll get the LP results in a couple of days.
Tonight Emmett said the opening prayer at a fundraising dinner for the Children's Cancer Fund of New Mexico. There were 600 people there! He did a great job and didn't get nervous. What a trooper! "Two Ties" Clayton knows how to eat a roll (and sometimes reminds me of Harpo Marx). Who are these kids' parents anyway?
Afterwards Emmett enjoyed playing with his new (and only) fidget spinner while enjoying pizza. He's wanted a fidget spinner for a long time and finally finished earning the $$ for it last night. We picked it up on the way to the hospital this morning.
We'll get the LP results in a couple of days.
Tonight Emmett said the opening prayer at a fundraising dinner for the Children's Cancer Fund of New Mexico. There were 600 people there! He did a great job and didn't get nervous. What a trooper! "Two Ties" Clayton knows how to eat a roll (and sometimes reminds me of Harpo Marx). Who are these kids' parents anyway?
Wednesday, July 12, 2017
6/30/17 MRI
We recently traveled to Boston for Emmett's latest follow-up MRI. He did it again without sedation! He's on a roll.
One spot in the scan showed some small changes from last time. This is the area of his "tethered spinal cord" that the doctors have commented on in the past. The area is on the front side of his spinal cord at the C5-C6 level. They also noted a compression fracture in one of his vertebra.
The doctors ordered a follow-up PET/CT scan to look for sugar uptake in the tissues in this area, and the scan identified a low level of activity at the spot in question.
It's uncertain where we go from here. In the past the doctors have found logical explanations for the findings in this area. We hope and pray the same is true this time. In the coming days Emmett will have a lumbar puncture back home in New Mexico to check for malignant cells in his spinal fluid.
We welcome your prayers and faith as we wait for more good news for Emmett!
One spot in the scan showed some small changes from last time. This is the area of his "tethered spinal cord" that the doctors have commented on in the past. The area is on the front side of his spinal cord at the C5-C6 level. They also noted a compression fracture in one of his vertebra.
The doctors ordered a follow-up PET/CT scan to look for sugar uptake in the tissues in this area, and the scan identified a low level of activity at the spot in question.
It's uncertain where we go from here. In the past the doctors have found logical explanations for the findings in this area. We hope and pray the same is true this time. In the coming days Emmett will have a lumbar puncture back home in New Mexico to check for malignant cells in his spinal fluid.
We welcome your prayers and faith as we wait for more good news for Emmett!
Subscribe to:
Posts (Atom)