Pathology

So what I didn't mention in the previous post is that we knew there was probably going to be what is called a positive margin on Alex's right kidney. A positive margin means that there are cancerous cells at the edge of the removed tissue. The reason we were OK with that was because the tumor butted up against the renal pelvis (a nice hollow membranous collecting system) and there wasn't anything else TO BE removed.

Turns out there wasn't a positive margin. That edge was nephrogenic rests (a precancerous change), there was no sign of anaplasia anywhere (ALL favorable histology). Talk about good news all around! Alex is supposed to have his drain removed on Monday at 8 AM, and I suspect we'll be seeing oncology Tuesday to find out what the plan is from here. What I do know is that the chemo won't be as nasty as it could have been and shouldn't be as nasty as it has been.

Wild couple of weeks

We've had a wild couple of weeks around here. First there was the massive F5 running down I-40 toward us that had us running from the house 45 minutes before it was projected to be here. We ended up with a friend overnight. Thankfully the tornado lifted about 5-6 miles west of the house and missed us here.

We went in for Alex's pre-op consult last Monday and found out that surgery was scheduled for Thursday, not June 18 as we had been originally told. So Alex was admitted last Wednesday for a bowel prep. For those of you unfamiliar with this process in a child, it involves a tube going from the nose to the stomach and about 3/4 of a gallon of Golytely. There is nothing "light" about this process. I think the guys finally got to sleep around 1 or 2 AM that night once Alex's gut was clear.

They put elbow immobilizers on him so he couldn't yank his NG tube out.

Surgery was slated for 12:50 the next day. Alex finally went back around 2 and after an hour of prep work, they got started on his surgery. The prep work involved putting in an epidural for post-op pain relief, two IV's (his port was already accessed), and an arterial line. They stuck him EIGHT times to get in that arterial line. Robert was not happy when he saw all of the spots the next day. I just thank God that he was asleep.

Sleeping in Daddy's arms before surgery.

Surgery took 8 hours all together. That included the hour of prep, ultrasound mapping of the kidney tumors, and an hour of thumb twiddling waiting on pathology. The surgeon managed to save half of his right kidney-I didn't expect that at all, honestly. So, lil man has two half kidneys. Beats one half of one kidney every day of the week.

So during surgery, Alex's blood pressure was a little low and the anesthesiologist did what anesthesiologists do-gave fluids. The surgeon said that blood loss was around 200 mL total. A pediatric unit of blood is around 240 mL. They gave Alex TWO units. His hemoglobin has been running around 9-10 since starting chemo. He was at 16 after surgery. At least he's well tanked up for the future. So we traded fluid overload status for well perfused kidneys. And he put out 400 ml during that 8 hour surgery. Now to put that in perspective-normal is 0.5 to 1 ml/kg/hr and Alex weighs just under 12 kg. So "normal" would be 6-12 mL/hr and he put out close to 50!

 Thanks to his fluid-overloaded status he got to spend the night in the PICU. They were afraid that the fluid would start shifting and kind of flood his lungs. So the plan was for him to stay on the ventilator overnight and if all was well in the morning, take him off the vent (and Robert and I were honestly going to go to a motel and pass out).  Have I mentioned that "plan" and "Alex" rarely go hand in hand? I was honestly expecting a puffy child. Instead I saw one with a little bit of puff in his lower legs, but not much. His chest x-ray was beautiful-clear as a bell. The problem was that the tip of the breathing tube was somewhere around where his neck meets his chest (WAY too shallow-like an inch too shallow). So the plan was to get him loaded up on a medication to keep him sleepy and slip the tube in a little deeper. Alex started really waking up well before that happened and with one nice violent cough, up came the breathing tube. They put him on some oxygen by nasal cannula and he did absolutely perfect.

Playing with Scout the next day after surgery in the PICU

The epidural for pain control and it seemed be working really really well-right up until he got fussy and I picked him up to snuggle. It took morphine and IV tylenol to calm him back down. They took the NG tube out Friday morning. After the intensive care doc had the NG tube taken out, the urology resident wrote an order to "start the NG tube." Needless to say, momma was a little hot. The nurse finally got ahold of the doc and she was like "oh that should have said stop the NG tube." Grrrrr. Residents.

One of the things they did during surgery was put in some methylene blue to check for urine leaks. As a result, Alex had really cool blue urine at first (it was that dilute) followed by a nice teal green. 

Yep, that's right. Only a nurse would take a picture like this.

We finally got to give Alex clear liquids on Sunday and real food Monday. When he started a regular diet, they went ahead and took off all of the IV fluids and started oral pain control meds. He did so much better unleashed.

There is a drain on his right side to drain blood and urine (potentially) since the tumor sat right up against the collecting system and just need to make sure he isn't leaking urine into the belly. We put his footed pajamas on him and pinned the bulb to the inside of his jammies. And I cut the feet out of them since he's unsteady at times in those on a good day. He's showing steady improvement every day. We go back on Monday to have the drain removed.

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.