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!
Tuesday, February 26, 2013
Friday, February 22, 2013
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.
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.
Thursday, February 21, 2013
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
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
Tuesday, February 19, 2013
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
Monday, February 18, 2013
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!
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
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