I can't believe I have to write this. We received more bad news today and need to keep you all up to date.
This morning we received a call from the oncologist and she said she had news that was going to change our treatment plan of Isaac in a negative direction. She asked us to drive up to Portland this afternoon as it was something we needed to chat about. I started to get a sinking feeling in my gut and we ended up just calling her back and saying that we wouldn't be able to make the drive and wanted to have the conversation over the phone.
Here's where we're at.
Isaac's tumor results came back from the Children's Oncology Group lab today. This is the central lab that looks at all children's tumors from hospital's like Randall's. Their assessment of the tumor after multiple looks is that it's a Stage 2 cancer and, more importantly, that the histology (the make-up of the cells) is unfavorable. Specifically it's that the cells in Isaac's Wilms' tumor are "diffused anaplastic." These two things change Isaac's treatment plan from one that's low-risk to now a high-risk tumor. This high-risk label comes with radiation therapy, nasty drugs, 8-9 months of treatment, and many of the treatments needed to be in-patient stays (2-5 days in the hospital) as the drugs are so bad.
There's serious things now to pay attention to. It is likely that his hearing will suffer and that he will need hearing-aids for the rest of his life. The affects on fertility when he's an adult are more likely. These drugs will cause vomiting and major nausea. We will be up in Portland a LOT. This comes with a 68% chance of EFS (event-free-survival). That means that there's a one-third chance that he relapses. The OS (overall survival) is higher, but it's no longer at the 99% that we previously thought it was.
The continued bright point of the conversation is that because of the Cushing's Syndrome we caught this thing really early. This was a very aggressive tumor that was pulled from his body and the doctor pulled it without complication. It's never happens that a tumor of this aggressiveness is found this early. Our doctor is communicating with a few doctors (one in Chicago and one in Washington D.C) to try to get a better feel for how to handle this case. It's aggressive but it was found so early. That's the light that we have to hope for. That and we're sending the labs off to get a 3rd opinion (opinion of the Randall's pathologist was Stage 1 and Favorable. For it to be Stage 2 and diffused anaplastic is weird).
Thanks for surrounding us in your prayers. I might write more soon but most likely I'll let it sit for a few days.
It just hurts so deeply. He's doing SO well. If you come by our house this weekend you'd see a normal three-and-a-half year old boy.
Please pray that the histology done by the Children's Oncology Group was done incorrectly. Please pray for our dear son who is going to have a really hard year. Please pray for mommy and daddy and brother and sister. And please keep Isaac's life and health at the forefront of your minds and your prayers.
"Lord Jesus. You hear our prayers and tears and sadness. Please work miracles in Isaac's life. We beg for your mercy. That Isaac would be healed from this cancer in a miraculous way. You've already done it once in his body and we ask that you do it again. Please hear this father's cry. Hear this family's cry. Hear this community's cry. Hear us and work wonders. That we would be able to avoid some of these terrible treatments and that Isaac would live a full and happy life. That he'd be able to walk out of this with a faith that could move mountains and have an infectious laughter that swelled from his soul. Abba Father hear our cries!"
This morning we received a call from the oncologist and she said she had news that was going to change our treatment plan of Isaac in a negative direction. She asked us to drive up to Portland this afternoon as it was something we needed to chat about. I started to get a sinking feeling in my gut and we ended up just calling her back and saying that we wouldn't be able to make the drive and wanted to have the conversation over the phone.
Here's where we're at.
Isaac's tumor results came back from the Children's Oncology Group lab today. This is the central lab that looks at all children's tumors from hospital's like Randall's. Their assessment of the tumor after multiple looks is that it's a Stage 2 cancer and, more importantly, that the histology (the make-up of the cells) is unfavorable. Specifically it's that the cells in Isaac's Wilms' tumor are "diffused anaplastic." These two things change Isaac's treatment plan from one that's low-risk to now a high-risk tumor. This high-risk label comes with radiation therapy, nasty drugs, 8-9 months of treatment, and many of the treatments needed to be in-patient stays (2-5 days in the hospital) as the drugs are so bad.
There's serious things now to pay attention to. It is likely that his hearing will suffer and that he will need hearing-aids for the rest of his life. The affects on fertility when he's an adult are more likely. These drugs will cause vomiting and major nausea. We will be up in Portland a LOT. This comes with a 68% chance of EFS (event-free-survival). That means that there's a one-third chance that he relapses. The OS (overall survival) is higher, but it's no longer at the 99% that we previously thought it was.
The continued bright point of the conversation is that because of the Cushing's Syndrome we caught this thing really early. This was a very aggressive tumor that was pulled from his body and the doctor pulled it without complication. It's never happens that a tumor of this aggressiveness is found this early. Our doctor is communicating with a few doctors (one in Chicago and one in Washington D.C) to try to get a better feel for how to handle this case. It's aggressive but it was found so early. That's the light that we have to hope for. That and we're sending the labs off to get a 3rd opinion (opinion of the Randall's pathologist was Stage 1 and Favorable. For it to be Stage 2 and diffused anaplastic is weird).
Thanks for surrounding us in your prayers. I might write more soon but most likely I'll let it sit for a few days.
It just hurts so deeply. He's doing SO well. If you come by our house this weekend you'd see a normal three-and-a-half year old boy.
Please pray that the histology done by the Children's Oncology Group was done incorrectly. Please pray for our dear son who is going to have a really hard year. Please pray for mommy and daddy and brother and sister. And please keep Isaac's life and health at the forefront of your minds and your prayers.
"Lord Jesus. You hear our prayers and tears and sadness. Please work miracles in Isaac's life. We beg for your mercy. That Isaac would be healed from this cancer in a miraculous way. You've already done it once in his body and we ask that you do it again. Please hear this father's cry. Hear this family's cry. Hear this community's cry. Hear us and work wonders. That we would be able to avoid some of these terrible treatments and that Isaac would live a full and happy life. That he'd be able to walk out of this with a faith that could move mountains and have an infectious laughter that swelled from his soul. Abba Father hear our cries!"
Our family heart aches for, and with, you. We continue to pray for sweet Isaac. We continue to pray for each of you as you parent through this. Praying for continued hope and light and joy in the victories and the day-to-day.
ReplyDeleteOur family continues to pray for yours, patience, strength and faith in his love and plan.
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