Back in the hospital

Well, we skipped Mother's Day weekend only to land in the hospital 10 days later. Alex had a neutrophil count of 54 on Tuesday, so when he finally went over 101 on Wednesday afternoon, the clinic just sent us straight to the floor. His neutrophil count was 0 and it's still 0 today. So he'll probably be in until at least Saturday if not longer.

Frustrated

It's been a bit hair-raising here in central Oklahoma the last few days. Thankfully all of our family has come through OK. The devastation in Moore and Shawnee just breaks my heart. I see lots of folks asking "why were the kids in school? why don't they have basements?" etc etc. You don't see the northern states canceling school every time there is a possibility of snow, do you? This tornado in Moore went from absolutely nothing to an EF4 in a matter of less than 30 minutes. The one the day before went from initial firing to significant tornado activity in under an hour. As for basements-you can thank a high water table and  clay soils for that. I remember Grandma's basement in western Oklahoma filling semi-regularly with water to some degree or another. Now with that said, I do believe they need safe rooms in these new buildings. I'm still ticked off that the builder talked us out of putting one in our home because "it would involve outside contractors" and we didn't have the money to pay for it up front. 

Now for the real reason you're here.  We saw Alex's oncologist today. On the upside, the tumors have shrunk even more. On the downside, his neutrophil count was 54 (under 500 is SEVERELY immune compromised), the surgeon is out of town next week and we aren't even scheduled to see him until June 3 and the surgery is tentatively scheduled for June 18. I'm not happy about this four week wait. I know we need his immune system back to somewhat normal before surgery so he'll heal, but I'm concerned about this whole immune system bounceback/tumor regrowth dance we're gonna have to do. The oncologist actually mentioned more chemo to buy time, yet I don't get how that could be useful since it will just wipe out his immune system again!!

Happy Mother's Day to MEEEEEEEE!!!!!!!!!!!!!!!

Alex WAS NOT in the hospital this past week. We broke the every 3 week cycle. Whew. He ran a low grade temp at times this weekend, but never high enough to have to go in.

He has now finished the 12 weeks of pre-operative chemo and is scheduled for an MRI on Friday. We will then meet with the oncologist a week from tomorrow to get the results and the plan for surgery. The PA was putting him on the surgical schedule when we left last week so that we won't have to wait as long once his scans are done. That's everything I know at this point. Everything after surgery will depend on how the pathology comes out.

The final rounds begin

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.

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.

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.

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.