Done with Chemo!

 Sorry it's been a while since I posted. Since Alex went on his post-surgery chemo things have actually been back to normal. Thankfully we got to ditch the doxorubicin and his counts were not affected that badly.

Had Alex's post-therapy appointment with the oncologist today. Scans look good. We do another MRI in 3 months and then start alternating MRI/ultrasound on 3 month intervals. They literally gave us a page of the follow up monitoring for the next 10 years that the study he is on recommends. We do bloodwork and exams every 3 months for 2 years, then every 6 months for 2 years and then we go to every year for 6 more years.

His port will stay in for about another 6 months and then it comes out. That will mean trips in about every 6 weeks overall so we can get it flushed. But when we've been doing weekly for 6 months, what is 6 months of every 6 weeks!!

September is Childhood Cancer Awareness month. I am making these key fobs and selling them to raise money for our CureSearch walk in October. $6 each and $5 will go to CureSearch ($1 is for shipping and/or PayPal fees). These are approximately 11" around and will fit around most hands.

We are walking here in OKC on Oct 19. Kind of nice way to celebrate lil man's birthday. If you would like to join the team as a virtual walker (or in person), join the team here. Or donations are accepted in the same spot.

First Post Op Ultrasound

Since Alex's pathology showed the his tumors were per-cancerous (we got *really* lucky and caught it before they became cancerous) his post-op chemo has been really easy compared to the previous course. No significant drops in neutrophils, no fevers, no hospital stays!!!!!!! He has one more dose in a couple of weeks followed by 2 more weeks of blood count monitoring and lots of post-chemo testing. Our meeting is set for right after Labor Day to meet with his oncologist for the "this is where we go from here" meeting.

Alex had his 7 week post-op checkup today with an ultrasound beforehand. That was looking good. Both kidneys were receiving blood flow (there was some concern that the right one would have a spasm set up and it would die) and the hematoma (blood collection) that had been by his left kidney was decreased and just about gone.

Things are pretty well back to normal around here. Whew.

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.

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.

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.

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.

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.

First hospital stay

Alex received round 3 last Friday. His AGC (aka ANC-measures the bacteria fighting cells in the blood) was down to 164, but they give vincristine no matter what the count since it doesn't really affect blood counts. A "normal" AGC is over 3000, the danger zone starts at under 1000 and 500 is really prone to infection.

Alex spiked a fever on me around 2 that afternoon, so after a call to the oncology clinic we were off for the ER. His count was up a little in the ER, but still under 500 so he was admitted. Talking to the doctor on Saturday the criteria for being released was no fever and his AGC starting to recover. His count Saturday morning was 50. Sunday's count was 990 (I think it was an error in reading the smear), but he had had a fever early that morning, so we were stuck. Numbers were back down Monday and finally came up Tuesday. The roughest part is that lil man was on a 5 foot tether more or less in terms of IV tubing and kept getting tangled. I did talk the attending into letting him off fluids during the day Monday and that made life easier.

Our stroller was a lifesaver. We'd load Alex up and take off for rides around the floor. I even took him down to my office one evening while he slept in the stroller and got an hour's worth of work done.

Robert was recently accepted into the Engineer in Training program at work. He missed the first two days of his new rotation at work, but they moved stuff around and basically left him where he'd been before so he could have a full week in a new location next week. Thankfully both of our jobs have been working with us as much as possible during this rough time.

We're back home, thank goodness. Robert is at work today and I'm working from the house. Alex has been playing all morning.

We know we'll have a surgery at some point, so I plan on taking the computer with me next time so we can keep folks updated better.

Terri

Round two

Alex had round 2 of his chemo yesterday. It was one of his vincristine only weeks, so we spent more time waiting than anything. We went in for his finger stick for his blood count and then had the vitals done and then back to the waiting room for a short wait until the CBC was done and the nurse was ready to give his chemo. Giving the chemo took less than 5 minutes total this week, so thank goodness for that.

Lil man was bit more tired than usual yesterday. He napped on the way home from the hospital and then passed out for an hour plus in my arms yesterday afternoon.One of the mom's from daycare made supper for us, so at least I didn't have to cook last night-thank you, thank you, thank you. Not having to cook after a day that involves the doctor's office is a blessing!

Midweek update

So we survived the great "non-blizzard" here in central Oklahoma. Friends to the west got a full-on blizzard but we got rain, a little sleet, and snow that pretty much melted on contact. Doesn't matter, we needed the moisture!

I've had lots of folks asking how Alex is doing. So far so good. He is still running around like the madman that he is and eating like a horse (which is normal for him). But I've also talked to a friend who started out as an oncology nurse and she said that most times the first dose isn't known for causing a lot of side effects. And as time goes on, I know it's going to get tougher on the little guy.

G'nite!

The First Chemo

Today was probably a day that will stick with me for the rest of my life. A friend and fellow WAGR mom put it best (sorry Kelly, I'm ripping your words off): "It's a huge milestone... but there's no page in the baby book for "Baby's First Chemo" :-0 Your heart breaks at the thought of deliberately putting poisons into your child's little body...and at the same time you feel intensely grateful, knowing these drugs will destroy the cancer."

Alex did very well all things considered today. The hardest part was making him hold still for 20 minutes while his doxorubicin went in-to say he was ticked off would be an understatement! They pre-medicated him with an anti-nausea med and he's been eating pretty much normally today. We'll start giving oral nausea meds tonight.

The Last of the Baseline Tests

I was awakened at 5:30 by a HUGE clap of thunder followed by the sound of sleeting hitting the windows. The local schools were closed, the University where I work was delayed opening by 2 hours, but lil man was scheduled today for his EKG, echocardiogram, and MRI as part of the baseline tests before he starts chemo. Enter SuperDad to the rescue (actually it was a matter of I just asked Robert to drive us so I didn't have to drive in it).

The oncologist wanted to get a baseline MRI so Alex could be followed with MRIs instead of CTs and significantly cut his radiation exposure. I was all set and ready for a really long day as his MRI was scheduled for 3:30. Children's does MRIs for the kids under sedation so they can get a good study. Honestly, if I knew I was going to have an hour long study where I had to hold perfectly still, I think I would want to be out! Anesthesia meant no food after 5 AM (so really, last night) and we could have clear liquids until 11 AM. I was not looking forward to this. To say I was happy when MRI called right as we were getting ready to leave and asked if we would like to come in earlier (they'd had cancellations) would be an understatement. I believe my comment to the lady was "Oh thank God!".  So instead of hanging around waiting until 1 PM to check in for his MRI, we were instructed to come straight down from his echo/EKG and check in.

The echo and EKG went just fine. Alex's port is right over the "best" window for seeing part of his heart, but the tech worked around it. For his MRI, they give laughing gas to put the kids to sleep before they start the IV. The anesthesiologist explained that she does not like using the port since it is a central line and the risk of infection is higher (and he really needs it for the chemotherapy). Robert arrived on his lunch break just in time to carry Alex back to the scan. Total scan time was 1.5 hours and it took lil man about 30 minutes to wake up enough to be discharged afterwards. He devoured FOUR graham crackers in recovery and was double fisting it on the way out with two more.

We start chemo tomorrow with a check in time of 9:30. My supervisor and section chief have basically informed me that if I need to work at home/in the evenings/on weekends to do whatever I need to do. My section chief is really concerned that Alex won't tolerate being in daycare while on chemo. So the plan is to just play it by ear right now. I will say that the lady who keeps Alex is pretty darned awesome and already has someone to temporarily fill the Friday's he is gone while on chemo. That savings of one day a week is going to add up big time over the course of this treatment and we'll take every bit of savings we can.

No promises on an update tomorrow. It will all depend on how Alex reacts to the chemo.

Terri

Port Placement

Port placement went well. Alex took a 20 minute nap in his highchair last night and was up until midnight and then slept until Robert got him up around 8:30. Got to the hospital at 9:15, back in a room around 10 and found out that he wasn't even scheduled until noon. So the nurses got him ready and brought in a crib. I can't get the video of him treating it like a trampoline to upload-but between that and his iPad, he managed to stay entertained. The worst part for me was the lack of cell reception, so getting messages out to family was spotty at best.

We got all the usual doctor visitors around noon and signed our consent.  I got to walk him back around 12:30 and talk to him while they gave him cherry scented gas through the mask (he kept trying to lick the mask). Once he was out, I left, grabbed Robert and we headed off for some food. He went back to the waiting room and I popped into my office to get a tiny bit more charge onto my phone.

Surgery took just under an hour and everything went just fine. They called for a parent to come to recovery about the time that my normal study meeting is held (I work in the building where Alex gets treatment). I sent Robert to be with Alex and headed up to my meeting. My meeting was over just in time for me to get down to post op, help Robert get Alex dressed and head for home.

So far so good, except for one upchuck in the car seat. Lil man had gobbled two or three sets of graham crackers and two little cartons of juice while in post op. Add all that food on a lil tummy plus a rather fast turn coming home and it all came up.Thank goodness it happened six blocks from home. We've been home about an hour and Alex has had some apple juice and all appears to be well with the world. He's doing his usual mad dash through the great room playing with the toys.

We have another full day Thursday. He has an EKG and echocardiogram in the morning and an MRI that afternoon. Then we are confirmed to start chemo Friday morning.

Terri

Original first post on CaringBridge

I'm copying over the post I had originally placed elsewhere here:

February 16, 2013:
The past week has been one of the craziest, stressful, and emotional weeks of my life. So, I'll back up and catch y'all up with a little background and the events of the past week.

Alex was diagnosed with aniridia at 2 months of age. Aniridia is a lack of iris (the colored part of your eye). None of us caught it at birth because he has a rim of iris present and it looked like he just had really dilated pupils-no biggie, his dad has pretty big pupils naturally. The pediatrician was concerned, and I figured it couldn't hurt to see an ophthalmologist, so an appointment was made. A few days later I noticed Alex's eyes were starting to jump side to side in a pattern that we medical folks call nystagmus-now that freaked me out! So we walk in to the eye doc, she takes one look at Alex and says, "he has aniridia" and explained that sometimes this comes with a genetic condition that can cause other issues. Dilated his eyes and put me back into the waiting room (thank God she is no longer at the eye center). That prompted us to have the genetic testing done on Alex, which confirmed he has WAGR/11 p Deletion Syndrome.

W in WAGR stands for Wilm's-there's approximately a 50/50 risk of these kiddos developing this kidney cancer, The A is for aniridia, G is for genitourinary issues (Alex had an undescended testicle) and R stands for retardation-developmental delays. If you want more info, check out wagr.org.

So, that 50/50 risk of Wilm's tumor earned us ultrasounds every 3 months. Just so happens I had my younger sister J with me last Friday for Alex's ultrasound. Amazing what you can get a "new" nurse to go see for fun. ;) Anyway, we both noticed the tech taking lots of pics and she went to make sure she had everything that the doctor needed and we knew something was up. We were then sent to the genetics clinic where they told us that they'd found a mass on Alex's kidney and that he would be scheduled for a follow up CT the next week.

The CT was on Monday. It took FIVE sticks to get an IV in lil man. Kid just has really bad valves in his veins. The nurses would get into the vein and hit the valve and no matter which nursey trick they used, it just didn't work. So after #3, I told them I wanted the ultrasound brought down and it took twice more. Let's just say that mommy now remembers that lil man's good vein is found just under his left AC using ultrasound. So they finally got the CT done and it confirmed that Alex had a tumor on each kidney. And let's just say that I like the radiologist much more than I like the geneticist who lectured me on kids chemotherapy (I had given a couple of names to her on Friday to pass along to the team since WAGR kids react a little differently to some things). We were told that oncology would be in contact with us.

We met with oncology Tuesday morning. Alex's oncologist (Dr. Meyer) started off asking if we had any questions/concerns before he started his spiel. I mentioned that I would like for him to consult with Dr. Dome as a trusted friend and colleague (and fellow Gorilla mom) had recommended that he be consulted. The consult was recommenced, mainly for two reasons:1-WAGR syndrome is extremely rare (we know of fewer than 500 cases worldwide and 500 is generous) and 2-the aforementioned we know these kiddos react more sensitively to some things. What I loved is that Dr. Meyer looked at me, grinned, and informed me that he'd already emailed Dr Dome the night before AND he'd emailed another oncologist at Texas Children's who'd treated 3 or 4 kiddos with WAGR and Wilm's. Whew. No resistance there. Thank GOD! 

So Dr. Meyer laid out the plan. Alex will have six weeks of chemotherapy with three drugs on weeks 1 and 4 and one drug the other 4 weeks. Then they'll rescan and decide on surgery or more chemo at that point. Alex is schedule for a port placement next Tuesday (for which I am incredibly grateful-limits the IV sticks), will have a baseline echocardiogram done on Thursday (one of the meds can cause long term heart issues but isn't expected to be an issue at these doses), and the plan is to start chemo on Friday. And somewhere in there we're supposed to squeeze in an MRI so they can track progress with MRIs instead of CTs to drop his radiation exposure. The "good" news is that Wilm's is highly responsive to therapy and has an incredible 5 year survival rate (which is pretty much what they consider to be the "cure" rate).

Now that we've covered all the gory medical stuff, I'm gonna get a little mushy. The three of us are incredibly blessed with wonderful friends and family. I confess, I alerted my mommy friends first. We've been through months of pregnancy, newborn sleeplessness and colic, all those fun baby firsts, toddler tantrums and all that fun stuff for the past 3 years (starting this month actually). There's not a whole lot we don't share. Then came those incredibly hard calls to the family. And once I told Grandma in person, I posted on Facebook what was going on. The outpouring of love and support has been absolutely amazing. Thank you all.

I plan on posting again Tuesday after the port surgery. And Robert may pop in from time to time to write a little. But those of you who know him well know that he's a man of few words. ;)

Ya know, I have one more incredible group that I need to mention here-our WAGR family. You have all already been an incredible source of strength for us. I'm sad we won't see you all in Minneapolis!

Intro

I had started a journal on CaringBridge regarding lil man's Wilms' tumor diagnosis and treatment, but after one whole post I'm just not happy with the format. There's a guestbook, but comments can't be tied to specific posts. So, given that I have a few friends who have posts here on blogspot, I decided to try this format.

We go in early tomorrow morning to check in for lil man's port placement-9:15. Not an ideal time when you're dealing with a toddler who doesn't understand why he doesn't get breakfast. But given that had there not been a cancellation we would have been going in at 2 PM, I'll take it. I'll update once he's out.

Terri