Quick Update
It's late and I have never been so tired in all my life, okay, that's a lie, I'm always tired but I have another big and busy day tomorrow.
Today, I am feeling slightly better about Spencer's situation. I took Shelbie in to the Oncologist because her eye infection is back with a vengence and while there, I talked to him about Spencer and his elevated Calcium. He said he would be surprised if it was a parathyroid problem and given all the metabolic abnormalities Spencer has, it could be his metabolic system causing problems- not cancer or even a benign tumor. After he said that, I felt much calmer about things at least regarding him.
Shelbie on the other hand is treading on thin ice. The IVIG didn't work at all this last time and he said that can happen depending on what kind of immunity was in the batch she received. She will be scheduled next week for another infusion. Her white count was triple what it normally is and her neutrophils were also elevated which is good. Interestingly enough, her lymphocytes were up slightly too! Those are the cells that were killed off a year ago with the chemo treatments.
They are still far from in the normal range but a change in the right direction nonetheless. Her platelets are still normal but lower than usual which is another indication that the lymphocytes are coming back. So, what does all this seemingly good news mean? Well, if they continue to climb, her platelets will continue to drop and chemo will start all over again. Basically, this nasty cycle begins.
We also discussed the fact that Shelbie keeps falling down for now reason and gets super weak and can barely even stand. There is nothing to indicate in the blood work that there is something off so if she hasn't improved a lot 1 week after her infusion, then it's off for a Tilt Table test.
A Tilt Table is like a see saw. They strap you down and begin tilting you up and down. As this takes place, they monitor your heart and blood pressure. He thinks she may have POTS- Postural Orthostatic Tachycardia Syndrome! A disorder of the autonomic nervous system and as I understand it, a hallmark symptom of mitochondrial disease.
I'm not holding my breath that things will turn around in a week and a half. It has been getting progressively worse since last fall (no pun intended) and IVIG has had no bearing on the symptoms either way. She has fallen down the stairs three times in the last two months and just fallen for no reason whatsoever at the store, in the living room, her bedroom, wherever many, many times. Her dysautonomia has gotten worse as well and POTS falls in the catagory of Dysautonomia (inability of the nervous system to regulate body functions.)
There you have it, more than you cared to read I'm sure but this is the best place for me to keep track of things. Regardless of the rough week we've had, I am feeling okay about things. My frustration and fears wax and wane but as long as they don't park themselves in the middle of my life, I can deal with a few moments of white knuckles til I pull it together.
Today, I am feeling slightly better about Spencer's situation. I took Shelbie in to the Oncologist because her eye infection is back with a vengence and while there, I talked to him about Spencer and his elevated Calcium. He said he would be surprised if it was a parathyroid problem and given all the metabolic abnormalities Spencer has, it could be his metabolic system causing problems- not cancer or even a benign tumor. After he said that, I felt much calmer about things at least regarding him.
Shelbie on the other hand is treading on thin ice. The IVIG didn't work at all this last time and he said that can happen depending on what kind of immunity was in the batch she received. She will be scheduled next week for another infusion. Her white count was triple what it normally is and her neutrophils were also elevated which is good. Interestingly enough, her lymphocytes were up slightly too! Those are the cells that were killed off a year ago with the chemo treatments.
They are still far from in the normal range but a change in the right direction nonetheless. Her platelets are still normal but lower than usual which is another indication that the lymphocytes are coming back. So, what does all this seemingly good news mean? Well, if they continue to climb, her platelets will continue to drop and chemo will start all over again. Basically, this nasty cycle begins.
We also discussed the fact that Shelbie keeps falling down for now reason and gets super weak and can barely even stand. There is nothing to indicate in the blood work that there is something off so if she hasn't improved a lot 1 week after her infusion, then it's off for a Tilt Table test.
A Tilt Table is like a see saw. They strap you down and begin tilting you up and down. As this takes place, they monitor your heart and blood pressure. He thinks she may have POTS- Postural Orthostatic Tachycardia Syndrome! A disorder of the autonomic nervous system and as I understand it, a hallmark symptom of mitochondrial disease.
I'm not holding my breath that things will turn around in a week and a half. It has been getting progressively worse since last fall (no pun intended) and IVIG has had no bearing on the symptoms either way. She has fallen down the stairs three times in the last two months and just fallen for no reason whatsoever at the store, in the living room, her bedroom, wherever many, many times. Her dysautonomia has gotten worse as well and POTS falls in the catagory of Dysautonomia (inability of the nervous system to regulate body functions.)
There you have it, more than you cared to read I'm sure but this is the best place for me to keep track of things. Regardless of the rough week we've had, I am feeling okay about things. My frustration and fears wax and wane but as long as they don't park themselves in the middle of my life, I can deal with a few moments of white knuckles til I pull it together.
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