Meeting of the minds
I received an email from our Hematologist/Oncologist last night. He is concerned about the PET scan results on both kids. He is having a meeting with several of his oncology colleagues to discuss Shelbie and Spencer's case on Friday morning. He did not elaborate. He said he will call me on Friday afternoon. That means, I'm cancelling my day on Friday. There is no way I will be able to focus, knowing our future could take a drastic turn.
It's easy to come to all sorts of conclusions about this...The first thing that came to my mind is that, of course, he is concerned, otherwise he would just say, "Don't worry. We'll see you for the yearly check up next January." The fact that he is calling in the troops to help him decipher the situation is unnerving at best.
To say the least, Shelbie is not handling the news well. It is more upsetting to see her giving up and terrified of dying than just about any other thing I could face. Spencer doesn't know. He is on a big photo shoot for the next three days so he is sufficiently distracted.
I have poured over these tests night after night, even comparing them to the PET scan two years ago. I think the difficulty comes in to play because with her CVID, granulomas, a benign tumor, grows in the lungs, which we are seeing. Over time, these can become cancerous and can sometimes show up 'HOT' on a PET scan. This was the concern two years ago which is why they decided to do the biopsy. They know from this recent PET scan that those same granulomas are still there and have increased in size and new ones have also shown up. However, there are new tumors that can not be identified as a granuloma tissue and they are bilateral in her abdomen and much larger than the other tumors or granulomas she has and have an SUV PET score of nearly 10.0. Anything over 3.0 should be surveyed for cancer. Shelbie is well above that score. CVID patients have an increased risk of developing lymphoma by 18 times, than the normal population. The lymphoma associated with CVID starts in the lungs and the granulomas. So, it’s extremely complex and if they diagnose this wrong, it literally becomes the difference between life and death.
Given her weeks of fevers, night sweats, extreme fatigue and dwindling overall health, I can only think of lymphoma.
Her earlier PET scan in 2016 was reported as 'Inconclusive' with areas of increased metabolic activity but nothing in the ranges we are seeing now. This PET scan was reported by the Radiologist as PET POSITIVE. So...I hope that explains what we are facing a little more. Either Shelbie has Lymphoma, or her CVID granulomas are spreading and growing at a rapid rate throughout her body and too many to count in her lungs. There is no treatment for the tumors that are invading her organs and the increase in size and number is startling over just two years. Lymphoma has a treatment plan, a chance to stop the growths.
Either scenario is scary and both will change the way we view life significantly.
As for Spencer, I don't even know what to expect. I haven't been as concerned with his thyroid tumors but with our luck, since he's been on the back burner in my mind, his will come back as cancer and Shelbie's will be granulomas...basically there is no way to win this. I'm bracing for the worst actually but only time will tell...Friday afternoon to be exact.
So, that's all I know for now...on those two.
Something is very wrong with Sam. His eyes are a light tint of yellow and there is a distinct bulging you can see just by looking at him without a shirt on. He’s also complaining of more pain in that area. I am at a loss. He too is very tired all the time and sleeps when he can. He just got a third part time job so he’s fairly busy and I’m afraid it’s only compounding his health issues.
Ugh...that’s all I can say.
It's easy to come to all sorts of conclusions about this...The first thing that came to my mind is that, of course, he is concerned, otherwise he would just say, "Don't worry. We'll see you for the yearly check up next January." The fact that he is calling in the troops to help him decipher the situation is unnerving at best.
To say the least, Shelbie is not handling the news well. It is more upsetting to see her giving up and terrified of dying than just about any other thing I could face. Spencer doesn't know. He is on a big photo shoot for the next three days so he is sufficiently distracted.
I have poured over these tests night after night, even comparing them to the PET scan two years ago. I think the difficulty comes in to play because with her CVID, granulomas, a benign tumor, grows in the lungs, which we are seeing. Over time, these can become cancerous and can sometimes show up 'HOT' on a PET scan. This was the concern two years ago which is why they decided to do the biopsy. They know from this recent PET scan that those same granulomas are still there and have increased in size and new ones have also shown up. However, there are new tumors that can not be identified as a granuloma tissue and they are bilateral in her abdomen and much larger than the other tumors or granulomas she has and have an SUV PET score of nearly 10.0. Anything over 3.0 should be surveyed for cancer. Shelbie is well above that score. CVID patients have an increased risk of developing lymphoma by 18 times, than the normal population. The lymphoma associated with CVID starts in the lungs and the granulomas. So, it’s extremely complex and if they diagnose this wrong, it literally becomes the difference between life and death.
Given her weeks of fevers, night sweats, extreme fatigue and dwindling overall health, I can only think of lymphoma.
Her earlier PET scan in 2016 was reported as 'Inconclusive' with areas of increased metabolic activity but nothing in the ranges we are seeing now. This PET scan was reported by the Radiologist as PET POSITIVE. So...I hope that explains what we are facing a little more. Either Shelbie has Lymphoma, or her CVID granulomas are spreading and growing at a rapid rate throughout her body and too many to count in her lungs. There is no treatment for the tumors that are invading her organs and the increase in size and number is startling over just two years. Lymphoma has a treatment plan, a chance to stop the growths.
Either scenario is scary and both will change the way we view life significantly.
As for Spencer, I don't even know what to expect. I haven't been as concerned with his thyroid tumors but with our luck, since he's been on the back burner in my mind, his will come back as cancer and Shelbie's will be granulomas...basically there is no way to win this. I'm bracing for the worst actually but only time will tell...Friday afternoon to be exact.
So, that's all I know for now...on those two.
Something is very wrong with Sam. His eyes are a light tint of yellow and there is a distinct bulging you can see just by looking at him without a shirt on. He’s also complaining of more pain in that area. I am at a loss. He too is very tired all the time and sleeps when he can. He just got a third part time job so he’s fairly busy and I’m afraid it’s only compounding his health issues.
Ugh...that’s all I can say.
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