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.
Wednesday, March 20, 2013
Controlled Chaos
That title says it all. We had a crazy weekend with a toddler who did not want to eat or drink and would throw up after meals (despite giving his nausea meds on a regular schedule). Not even chocolate milk would entice him. Which granted us a one way ticket to the ER for fluids and Zofran.Thankfully the fluids and time seemed to take the nausea down a notch and he is back to eating everything in sight. Whew.
We've had multiple things happen during Alex's treatment that have been very real blessings. We've had moms bring us supper on chemo nights, a HUGE care package full of snacks, coloring books and such for Alex, toys, etc. Robert called me earlier this week and said that someone had donated 200 hours of shared leave to him. This was on top of the 160 he was donated last week that we had planned on using for doctor's appointments, hospitalizations, etc. That 200 hour donation means that Robert can take days off and stay home with lil man while his counts are really low (otherwise it was going to be LOTS of working from home time for me-and I'll still work from home some).
Robert and Alex went to the park after work yesterday. I think Alex had a good time. :)
I was flipping through the links for the 10 Strong team who is raising money here in OKC for St. Baldrick's Foundation by shaving their heads their coming Sunday and came across this guest blogger series. Vanessa is part of the 10 Strong team and is the guest blogger. She talks about her sons journey (he's cancer free now). http://liferearranged.com/category/childhood-cancer/ I'll let you read the series, there are two entries out of four out right now. But reading the second one, she totally hit the nail on the head. Seeing the first bald spot on my lil man's head made it absolutely real. His hair is down to a soft downy fuzz all over his head.
We've had multiple things happen during Alex's treatment that have been very real blessings. We've had moms bring us supper on chemo nights, a HUGE care package full of snacks, coloring books and such for Alex, toys, etc. Robert called me earlier this week and said that someone had donated 200 hours of shared leave to him. This was on top of the 160 he was donated last week that we had planned on using for doctor's appointments, hospitalizations, etc. That 200 hour donation means that Robert can take days off and stay home with lil man while his counts are really low (otherwise it was going to be LOTS of working from home time for me-and I'll still work from home some).
Robert and Alex went to the park after work yesterday. I think Alex had a good time. :)
I was flipping through the links for the 10 Strong team who is raising money here in OKC for St. Baldrick's Foundation by shaving their heads their coming Sunday and came across this guest blogger series. Vanessa is part of the 10 Strong team and is the guest blogger. She talks about her sons journey (he's cancer free now). http://liferearranged.com/category/childhood-cancer/ I'll let you read the series, there are two entries out of four out right now. But reading the second one, she totally hit the nail on the head. Seeing the first bald spot on my lil man's head made it absolutely real. His hair is down to a soft downy fuzz all over his head.
Sunday, March 17, 2013
Round Four
Alex's counts were WAY up on Friday. When his bone marrow kicked back in, it kicked back in big time. So we had round four of his chemo-which was another "big" round with all 3 drugs. Not sure if it's teething (I know he's cutting his lower left 2nd year molar) or chemo side effects, but the evenings have been a mess. He wouldn't go to sleep Friday night, didn't want to take his meds, and was crying A LOT. I knew it wasn't anything too serious because Robert could make him laugh by being silly (YAY for Daddy!). About 9:45 we'd just had enough and I suggested a car ride. Worked like a charm.
Saturday morning he was happy enough that I got out to go meet a friend for a mani/pedi and to eat lunch. Felt really good to have some "me" time. Now I just have to find a way to kick Robert out for some time for himself. Between work and school, he doesn't have much spare time to begin with. So when you add on a cranky toddler that takes 2 parents to juggle, life gets really interesting.
I'm going to attempt to go into the office tomorrow. I spent two hours there today and felt like I got a good chunk done, but it's never enough when you've been out for a week! I was working from home, but there are the inevitable bits and pieces that just require me to be there in person. We'll see how Alex does. I may just work half a day in the office and do the rest of the day here at home.
Saturday morning he was happy enough that I got out to go meet a friend for a mani/pedi and to eat lunch. Felt really good to have some "me" time. Now I just have to find a way to kick Robert out for some time for himself. Between work and school, he doesn't have much spare time to begin with. So when you add on a cranky toddler that takes 2 parents to juggle, life gets really interesting.
I'm going to attempt to go into the office tomorrow. I spent two hours there today and felt like I got a good chunk done, but it's never enough when you've been out for a week! I was working from home, but there are the inevitable bits and pieces that just require me to be there in person. We'll see how Alex does. I may just work half a day in the office and do the rest of the day here at home.