Since I last wrote things have been pretty mellow around here. We spent 48 hours in the hospital last weekend (but ONLY 48). Same old story-fever and low neutrophil count. Alex had had a cough for 2 days, so the doc put us on contact precautions so he didn't spread the virus to other kiddos. Let me tell ya, it sucks being on contact precautions. Mainly because you're stuck in the room. All the time. With a toddler!
Hopefully today was the last time Alex has to get the wicked doxorubicin. The PA looked and his MRI has been ordered, but we haven't heard yet if it has been scheduled. Let's just say that crazy momma will come out if someone drops the ball this time.
Not a whole lot more to tell. Robert has finished one class for the semester and just has to take a test to finish his other course. I'm just thankful that this semester has been relatively quiet given the chaos around us.
Friday, April 26, 2013
Friday, April 12, 2013
Week 8
Eight down, 4 to go. Alex's bone marrow has started crashing faster and not bouncing back as fast. His neutrophil count was 162 this morning so I'm really glad he's been home with Robert all week. With him being so immune compromised, he's out of daycare. Which means Robert taking off more time and me working form home-lots. I may slowly lose my mind being home with a toddler 2-3 days a week. Let's just say I have an all new respect for stay at home parents.
Monday, April 8, 2013
Cycle 2-week 7
We started the second 6 weeks of chemo for
Alex today. Other than the lab being behind which pushed everything back
(no definite neutrophil count=no chemo). Alex has to have a neutrophil
count of 750 to start the new rounds and his count today was 858. So far
so good today. The problem with a neutrophil count of 858 is that he is
still susceptible to everything under the sun. So he's staying home
with us the rest of the week and we'll see what Friday brings.
His bone marrow is not bouncing back anywhere near as fast as it has in the past and it may just be time to start alternating my working at home with Robert taking leave. Especially when we had two hospitalizations in the last cycle and as much as I am happy with the care we get at Children's, I really prefer my home with all of my guys here.
His bone marrow is not bouncing back anywhere near as fast as it has in the past and it may just be time to start alternating my working at home with Robert taking leave. Especially when we had two hospitalizations in the last cycle and as much as I am happy with the care we get at Children's, I really prefer my home with all of my guys here.
Sunday, April 7, 2013
Six week scans
Turns out Alex's admission last weekend was a blessing in disguise. It's a mess getting MRI's scheduled on little ones since they have to have anesthesia. Not sure if someone dropped the ball or if it was just a five week lag on getting him in, but the oncologist is checking into it. His outpatient MRI wasn't scheduled until April 12-completely unacceptable. But since we just happened to be in the hospital (and not ready for discharge until Monday morning), Alex had his MRI done last Monday.
We're going to give Alex another 6 weeks of chemo. Everyone sat down and the tumor on the left definitely has shrank enough to meet the “partial response” definition. The one on the right did not-it shrank but not 30%. Dr. Meyer and Dr. Kropp both consulted colleagues who had dealt with bilateral Wilm's and everyone agrees. They took into account that most of the time kiddos with WAGR syndrome have a favorable histology present in the tumors but may have a fibrous skeleton keeping it from “melting away”.
If they did a biopsy at this point, it would be an additional open surgery, would “upstage” the tumor in terms of radiation treatment (not good) and they all agree to play the odds and go with six more weeks of chemo as recommended in the protocol. We’ll start back tomorrow.
We took advantage of the chemo-free, healthy immune system. Alex stayed with Auntie Ang, Uncle Shawn and the boys and Robert and I had an evening to ourselves. It was nice. We went and had dinner, went to Bricktown and rode in a horse-drawn carriage, had dessert at the Melting Pot and then spent a couple of hours at The Blue Door listening to music. Today we met a friend (a fellow October Mom and her babe) for the Medival Faire in Norman. Alex slept most of the time in his stroller (his usual MO).
I'll try to keep this updated better. In the meantime, I tend to post short and sweet announcements on the Facebook page.
We're going to give Alex another 6 weeks of chemo. Everyone sat down and the tumor on the left definitely has shrank enough to meet the “partial response” definition. The one on the right did not-it shrank but not 30%. Dr. Meyer and Dr. Kropp both consulted colleagues who had dealt with bilateral Wilm's and everyone agrees. They took into account that most of the time kiddos with WAGR syndrome have a favorable histology present in the tumors but may have a fibrous skeleton keeping it from “melting away”.
If they did a biopsy at this point, it would be an additional open surgery, would “upstage” the tumor in terms of radiation treatment (not good) and they all agree to play the odds and go with six more weeks of chemo as recommended in the protocol. We’ll start back tomorrow.
We took advantage of the chemo-free, healthy immune system. Alex stayed with Auntie Ang, Uncle Shawn and the boys and Robert and I had an evening to ourselves. It was nice. We went and had dinner, went to Bricktown and rode in a horse-drawn carriage, had dessert at the Melting Pot and then spent a couple of hours at The Blue Door listening to music. Today we met a friend (a fellow October Mom and her babe) for the Medival Faire in Norman. Alex slept most of the time in his stroller (his usual MO).
I'll try to keep this updated better. In the meantime, I tend to post short and sweet announcements on the Facebook page.
In the Hospital Again
I failed to post this last weekend...
Yep, feeling like a bad Willie Nelson parody here. Alex spiked a fever yesterday, had a ANC of ZERO and was admitted. At least this time we've got one of the big rooms. Doesn't feel anywhere near as claustrophobic.
They ran a viral screen on Alex and it popped up positive for rhinovirus (common cold) and enterovirus (stomach flu type symptoms). So in addition to being in the hospital getting antibiotics, we're on contact precautions and may be stuck in the room (double checking with his nurse-not like we'd be letting him run). Color me excited.
Alex is asleep and Robert is at home napping. So I'm going to go back to working on some stuff to get a new study up and running.
Yep, feeling like a bad Willie Nelson parody here. Alex spiked a fever yesterday, had a ANC of ZERO and was admitted. At least this time we've got one of the big rooms. Doesn't feel anywhere near as claustrophobic.
They ran a viral screen on Alex and it popped up positive for rhinovirus (common cold) and enterovirus (stomach flu type symptoms). So in addition to being in the hospital getting antibiotics, we're on contact precautions and may be stuck in the room (double checking with his nurse-not like we'd be letting him run). Color me excited.
Alex is asleep and Robert is at home napping. So I'm going to go back to working on some stuff to get a new study up and running.