We were done. We were clear. We had started to put it behind us.
We had a party. We sang. We laughed. We took pictures and painted our faces, and ate pink popcorn.
We went camping. We went swimming. We went hiking. We began to retake our lives.
And then... And then it happened. Just a scan to check things out, make sure we were still good.
But why, Dad? Why do I need the IV? Can't we wait 6 months for the scan? Please?
We need to do it, sweetie. What if it comes back? Wouldn't you want to know sooner? So we can get rid of it?
...
Dad, you were right. I'm glad you made me do the scan.
Back in the hospital Back on the chemo. Back to juggling life and disease, trying to fight a dual battle and doing poorly at both.
Back to updates, well wishes and offers of help. Back to dodging and evading your own thoughts about what if... What if it doesn't work?
But there's no time to be sad or bathe in self pity. Forge on. Keep going. Prepare for the next battle.
But sometimes, you just need to sit. Sit quietly, like Ferdinand, and smell the flowers. And cry.
Just a little.
Wednesday, July 30, 2014
Air In Line
This may come across incredibly selfish, but I want to say - I HATE IV pumps, and in particular, the "Air in Line" error.
Used to be, an IV was a hanging bag, with gravity working against an adjustable clamp to set the flow rate. These days we have an IV pump, which regulates flow rate.
I truly believe this thing was developed and marketed by Satan himself. I've been going over it, looking for an address, expecting to see Hell (plus curious what the zip code is there...)
These things work almost flawlessly during the day. But come nightfall, things change. It may detect when the people in the room have drifted off to forced and uneasy sleep, and then it's on.
Every 30-45 minutes, throughout the night, and alarm begins to ring, showing a message of "air in line" on the screen. The alarm is loud enough to wake those in the room, but not loud enough to make it through the door and out to the nurses station where the nurses are sitting charting/chatting on night shift.
So, up I get, to go get the nurse. When she comes in, she pulls the line, taps it, puts it back and restarts the pump. All seems well then. She leaves, I lay back down, and off to sleep again.
Then, it repeats.
And repeats.
And repeats.
Every once in a while I instead hit the nurse call button, but inevitably the medical assistant is not at the desk, and the call goes unanswered. So, then I call the nurse's phone, and undoubtedly she'll be sterile in another room, so the call goes unanswered.
You can silence the alarm, for 60 seconds. Then it's back.
You can also ignore it. This is a bad idea. If ignored for 5 minutes, the volume jumps to a level that the patients next door begin to come out in the hall, thinking the building is in fire.
What's the worst part? Harper sleeps right through it. So, I get all the enjoyment to myself.
So, selfish post. In summary, I hate IV pumps.
Once I get back home, I'm sure I'll have nightmares about the words:
Air In Line
Used to be, an IV was a hanging bag, with gravity working against an adjustable clamp to set the flow rate. These days we have an IV pump, which regulates flow rate.
I truly believe this thing was developed and marketed by Satan himself. I've been going over it, looking for an address, expecting to see Hell (plus curious what the zip code is there...)
These things work almost flawlessly during the day. But come nightfall, things change. It may detect when the people in the room have drifted off to forced and uneasy sleep, and then it's on.
Every 30-45 minutes, throughout the night, and alarm begins to ring, showing a message of "air in line" on the screen. The alarm is loud enough to wake those in the room, but not loud enough to make it through the door and out to the nurses station where the nurses are sitting charting/chatting on night shift.
So, up I get, to go get the nurse. When she comes in, she pulls the line, taps it, puts it back and restarts the pump. All seems well then. She leaves, I lay back down, and off to sleep again.
Then, it repeats.
And repeats.
And repeats.
Every once in a while I instead hit the nurse call button, but inevitably the medical assistant is not at the desk, and the call goes unanswered. So, then I call the nurse's phone, and undoubtedly she'll be sterile in another room, so the call goes unanswered.
You can silence the alarm, for 60 seconds. Then it's back.
You can also ignore it. This is a bad idea. If ignored for 5 minutes, the volume jumps to a level that the patients next door begin to come out in the hall, thinking the building is in fire.
What's the worst part? Harper sleeps right through it. So, I get all the enjoyment to myself.
So, selfish post. In summary, I hate IV pumps.
Once I get back home, I'm sure I'll have nightmares about the words:
Air In Line
Monday, July 28, 2014
Second Verse
The scenery is familiar. Many faces we recognize. Many people recognize us.
We showed up in our coordinated "Hope For Harper" t-shirts, and sat relatively calmly in the surgical family waiting room full of "first timers". We've been here before. Not our first rodeo.
The surgery took the hour predicted, and the surgeon called us in to tell us everything went well. As Harper was in recovery, we visited our "favorite" (only) restaurant in Kosair - McDonalds - for some breakfast.
We knew she'd be delivered to 7 West, so we went to meet her. The floor is only a little more than half full, so it's quiet as we arrive. They recognize us (sad), and show us to Harper's room. It's one we haven't been in before (there aren't that many left that we haven't yet frequented). We sit, and wait.
We wait for The Hulk. See, Harper doesn't wake well from anesthesia. She transforms from sweet adorable Harper to angry scary Harper, and she'll stay that way for a few hours, before an internal switch flips, and the Harper we love re-appears.
The Hulk did not disappoint. Once she arrived and awoke, it was on. The nurse needed to hook fluids to her Broviak. She said no. She smacked at the nurses hand. She screamed blood-curdling screams that I'm confident we're heard by the entire floor. She grabbed, she cried, she wriggled and writhed. Melissa and I plus 2 nurses held her down to get the lines hooked up.
She accused the nurse, the doctors and the hospital of trying to kill her. She wanted the line out. She wanted the IV pump off. She begged me to lock the door. When I explained there are no locks, she demanded I bar it to keep them out. When all that failed, she asserted we were trying to kill her too, and that the medicine/fluids were poison.
This is all a perverse reverse of what happened when her line came out last time. Then she begged for it to be put back in, and even offered up her arm for a peripheral IV.
After a dose of fentanyl and lorazepam, she's back asleep - hopefully allowing the hulk-ifying anesthesia to wear off so she can be a little bit more her normal crazy self and not the demon-possessed child she just demonstrated.
But, we've been down this road, so we know a little of what to expect. Despite despising that we are here, it is oddly slightly reassuring to be in familiar surroundings.
Much of what we expect should be very similar to our experience before. More of the same, just stronger.
Second verse, just like the first. A little bit louder, and a little bit worse.
We showed up in our coordinated "Hope For Harper" t-shirts, and sat relatively calmly in the surgical family waiting room full of "first timers". We've been here before. Not our first rodeo.
The surgery took the hour predicted, and the surgeon called us in to tell us everything went well. As Harper was in recovery, we visited our "favorite" (only) restaurant in Kosair - McDonalds - for some breakfast.
We knew she'd be delivered to 7 West, so we went to meet her. The floor is only a little more than half full, so it's quiet as we arrive. They recognize us (sad), and show us to Harper's room. It's one we haven't been in before (there aren't that many left that we haven't yet frequented). We sit, and wait.
We wait for The Hulk. See, Harper doesn't wake well from anesthesia. She transforms from sweet adorable Harper to angry scary Harper, and she'll stay that way for a few hours, before an internal switch flips, and the Harper we love re-appears.
The Hulk did not disappoint. Once she arrived and awoke, it was on. The nurse needed to hook fluids to her Broviak. She said no. She smacked at the nurses hand. She screamed blood-curdling screams that I'm confident we're heard by the entire floor. She grabbed, she cried, she wriggled and writhed. Melissa and I plus 2 nurses held her down to get the lines hooked up.
She accused the nurse, the doctors and the hospital of trying to kill her. She wanted the line out. She wanted the IV pump off. She begged me to lock the door. When I explained there are no locks, she demanded I bar it to keep them out. When all that failed, she asserted we were trying to kill her too, and that the medicine/fluids were poison.
This is all a perverse reverse of what happened when her line came out last time. Then she begged for it to be put back in, and even offered up her arm for a peripheral IV.
After a dose of fentanyl and lorazepam, she's back asleep - hopefully allowing the hulk-ifying anesthesia to wear off so she can be a little bit more her normal crazy self and not the demon-possessed child she just demonstrated.
But, we've been down this road, so we know a little of what to expect. Despite despising that we are here, it is oddly slightly reassuring to be in familiar surroundings.
Much of what we expect should be very similar to our experience before. More of the same, just stronger.
Second verse, just like the first. A little bit louder, and a little bit worse.
Surgery Day
It's 5:30am, and we're up and moving. Some (actually most) of us begrudgingly, with a few others left sleeping almost unaware.
Today Harper gets her dreaded line surgically re-installed. Sad, because it signals more chemo (likely stronger than before) but somewhat bittersweet, because it will mean less needle sticks as the blood tests ramp up in the coming weeks.
Later today, or maybe tomorrow (don't know) chemo will begin again.
Prayers and good wishes welcome on Surgery Day, and everyday afterwards.
Today Harper gets her dreaded line surgically re-installed. Sad, because it signals more chemo (likely stronger than before) but somewhat bittersweet, because it will mean less needle sticks as the blood tests ramp up in the coming weeks.
Later today, or maybe tomorrow (don't know) chemo will begin again.
Prayers and good wishes welcome on Surgery Day, and everyday afterwards.
Thursday, July 24, 2014
The Clock is Ticking
Tic Toc. Tic Toc.
My current coping mechanism is to try to forget that we thought we were past all this, and instead take the view that we got a nice, extended break in therapy, and we're now entering the next stage of treatment. This way I get to look at the summer in a positive light.
But time is ticking away. We learned this morning that Harper's central line will go back in, via surgery, on Monday morning. We will arrive at 6:30 AM, be in surgery by 7:30 and, immediately upon completion of the surgery, be admitted to the hospital to start the next round of chemo.
We're happy that it looks like we'll get the same surgeon as we have had before. We really like her, and feel more comfortable with the procedure with her with the scalpel.
Until then, we'll be trying to act as normal as possible, and enjoy the time we have. Swimming is high on Harper's list of things to do, as once the line is back in, swimming will be much harder to do.
The clock is ticking. Our "break" time is running out.
My current coping mechanism is to try to forget that we thought we were past all this, and instead take the view that we got a nice, extended break in therapy, and we're now entering the next stage of treatment. This way I get to look at the summer in a positive light.
But time is ticking away. We learned this morning that Harper's central line will go back in, via surgery, on Monday morning. We will arrive at 6:30 AM, be in surgery by 7:30 and, immediately upon completion of the surgery, be admitted to the hospital to start the next round of chemo.
We're happy that it looks like we'll get the same surgeon as we have had before. We really like her, and feel more comfortable with the procedure with her with the scalpel.
Until then, we'll be trying to act as normal as possible, and enjoy the time we have. Swimming is high on Harper's list of things to do, as once the line is back in, swimming will be much harder to do.
The clock is ticking. Our "break" time is running out.
Wednesday, July 23, 2014
Calm Before the Storm
I suppose life is a bit like living on a tropical island. At some times, it's pure paradise, and suddenly, without warning, along comes a storm, ferocious and devastating.
It's been about 3 months since the last storm ended. We've enjoyed 90 or so days of the tranquility that comes with no evidence of disease. We've spent our time trying to repair the damage, and enjoy the beautiful weather. But yesterday we got the news that Harper's cancer has reared it's ugly head again. A storm is once again on the radar, barreling towards us, gaining strength.
We knew there was a good chance this would happen, but we laid in the hammocks and played in the sand, warily watching the sky, but hoping against hope it wouldn't come. But apparently the last storm didn't blow itself out completely. It left remnant winds that have stirred and are back again.
We know it's coming, but we don't want to believe. Do we have the strength to endure it again? Will the wind and rain beat down stronger and more damaging than before? Will our shelter hold? How high will the storm surge rise?
Soon, we'll get the plan. Shortly we'll know better what we're up against. But until then, we sit, in apparent paradise, waiting, thinking, wondering, worrying. What will happen? When? How will it compare to what we've been through before? Will what we've built hold?
In many ways, the last time through we had the benefit of ignorance. We didn't know what was coming, but we were fresh, young, and strong. Now, we're more weathered and wise, and we have an idea of what to expect, and we're scared. We're tired, not fully recovered, but it will come regardless.
So we sit on the beach, play in the sand, lay in the hammocks, and fixate, knowingly, on the clouds appearing in the distance. We enjoy the last few moments in paradise before the hurricane hits. The calm before the storm.
Monday, February 10, 2014
Tell the band to start warming up
The scan results are in:
Lungs - completely clear; no sign of any lesions
Left kidney (area where it was removed) - no new growths detected
Liver - 2 main "spots" remain; both are smaller than the last scan; both are sized between a hazelnut and a walnut.
There is a chance that the remaining lesions are just scar tissue, with no remaining tumor. To determine, Harper will undergo another biopsy, likely in the next week or two.
Besides the biopsy, the remaining step, according to the standard of care for Wilms, is radiation. We will meet with the radiation oncologist in the next week or so. He will walk us through what that will be like, how long it will go on, and what adverse effects we can expect. They will likely irradiate the lungs, the liver and the area where they took the kidney.
The chemo appears to have done its job. Now, we need to finish any remaining cells off for good.
We're not done yet, but we're feeling closer to the end than ever. 9 months ago we didn't even think about what it would be like to be where we are today - at least I tried to avoid it as we didn't know then if we'd ever get here. But, here we are.
It's still too early to celebrate just yet... But someone should tell the band to start warming up.
Lungs - completely clear; no sign of any lesions
Left kidney (area where it was removed) - no new growths detected
Liver - 2 main "spots" remain; both are smaller than the last scan; both are sized between a hazelnut and a walnut.
There is a chance that the remaining lesions are just scar tissue, with no remaining tumor. To determine, Harper will undergo another biopsy, likely in the next week or two.
Besides the biopsy, the remaining step, according to the standard of care for Wilms, is radiation. We will meet with the radiation oncologist in the next week or so. He will walk us through what that will be like, how long it will go on, and what adverse effects we can expect. They will likely irradiate the lungs, the liver and the area where they took the kidney.
The chemo appears to have done its job. Now, we need to finish any remaining cells off for good.
We're not done yet, but we're feeling closer to the end than ever. 9 months ago we didn't even think about what it would be like to be where we are today - at least I tried to avoid it as we didn't know then if we'd ever get here. But, here we are.
It's still too early to celebrate just yet... But someone should tell the band to start warming up.
Thursday, February 6, 2014
The Strength to Run
I've never been a "real" runner.
Sure, I was in the Army. I ran... because I was ordered to run. I ran... because it was a Physical Fitness test. I ran not because I wanted to, but because I was compelled to run.
Running hurts. An object in motion will tend to want to stay in motion - but that natural law doesn't apply to the human body (or at least my human body) running. My body wants to rest. It feels the pounding of the ground, the grinding of the knees, the sharpness in the lungs, and it screams STOP.
I envy those who run because they enjoy it. I aspire to be one of them. I run these days (without an officer or noncom telling me to), but for health, weight control and self-image, not because I love to run.
But runners - "real" runners - embrace the agony, and, at some level and at some moments, actually enjoy it.
Transcending (or ignoring) pain and enjoying an otherwise miserable experience shows an incredible amount of strength. Strength that I suspect comes from deep inside.
In April 2013, Harper ran a 2 mile race. The Georgetown 2-miler; and she came home with a trophy for one of the best times in her age group.
In May, she started a longer race. A race she's still running.
Unfortunately, she's running because she has to, not because she chose to. She is compelled, by some force, deep within her, to keep going; to ignore the pain, to dismiss the despair, to confront the fear - and keep running.
Almost 9 months have elapsed, and she's still running.
And we've been running with her. Her trainers, of sorts. Watching her run, urging her on, following closely... Tired and weary, but still here, and ultimately, focused on her.
And just like "real" runners, at many different times Harper puts aside the hardship; ignores the unfairness of it all; transcends the terrible circumstance and actually enjoys - life.
Sure, it hurts. Yes, it's scary. Of course, she's tired.
But often Harper's hallmark is a smile. A giggle. A hug.
Strength wells up inside this little bald girl in the fight for her life, and it spills out on those of us lucky enough to be around her.
More people than I can count have remarked, at different times and in different ways, on how they admire or respect my personal strength in this circumstance. They indicate amazement at how strong I seem to be for Harper and the rest of our family.
The reality is - the strength they see is not mine. My own strength is augmented, supported, and pales in comparison to the strength that flows from Harper.
She is the reason I keep running. Some days it's easy; the knees don't hurt, the air is warm, the sun shines. Other days I ache, the air is cold and harsh in my lungs and cold rain falls and soaks me through.
But I keep running, following, urging on Harper.
But I am not a "real" runner. And the strength that keeps me upright is not my own.
I'm not sure where the finish line is, but keep running Harper. I'm right here. I know this race is not what you chose, but you're doing great. Keep it up.
"You never know how strong you are until being strong is the only choice you have." - Unknown
Sure, I was in the Army. I ran... because I was ordered to run. I ran... because it was a Physical Fitness test. I ran not because I wanted to, but because I was compelled to run.
Running hurts. An object in motion will tend to want to stay in motion - but that natural law doesn't apply to the human body (or at least my human body) running. My body wants to rest. It feels the pounding of the ground, the grinding of the knees, the sharpness in the lungs, and it screams STOP.
I envy those who run because they enjoy it. I aspire to be one of them. I run these days (without an officer or noncom telling me to), but for health, weight control and self-image, not because I love to run.
But runners - "real" runners - embrace the agony, and, at some level and at some moments, actually enjoy it.
Transcending (or ignoring) pain and enjoying an otherwise miserable experience shows an incredible amount of strength. Strength that I suspect comes from deep inside.
In April 2013, Harper ran a 2 mile race. The Georgetown 2-miler; and she came home with a trophy for one of the best times in her age group.
In May, she started a longer race. A race she's still running.
Unfortunately, she's running because she has to, not because she chose to. She is compelled, by some force, deep within her, to keep going; to ignore the pain, to dismiss the despair, to confront the fear - and keep running.
Almost 9 months have elapsed, and she's still running.
And we've been running with her. Her trainers, of sorts. Watching her run, urging her on, following closely... Tired and weary, but still here, and ultimately, focused on her.
And just like "real" runners, at many different times Harper puts aside the hardship; ignores the unfairness of it all; transcends the terrible circumstance and actually enjoys - life.
Sure, it hurts. Yes, it's scary. Of course, she's tired.
But often Harper's hallmark is a smile. A giggle. A hug.
Strength wells up inside this little bald girl in the fight for her life, and it spills out on those of us lucky enough to be around her.
More people than I can count have remarked, at different times and in different ways, on how they admire or respect my personal strength in this circumstance. They indicate amazement at how strong I seem to be for Harper and the rest of our family.
The reality is - the strength they see is not mine. My own strength is augmented, supported, and pales in comparison to the strength that flows from Harper.
She is the reason I keep running. Some days it's easy; the knees don't hurt, the air is warm, the sun shines. Other days I ache, the air is cold and harsh in my lungs and cold rain falls and soaks me through.
But I keep running, following, urging on Harper.
But I am not a "real" runner. And the strength that keeps me upright is not my own.
I'm not sure where the finish line is, but keep running Harper. I'm right here. I know this race is not what you chose, but you're doing great. Keep it up.
"You never know how strong you are until being strong is the only choice you have." - Unknown
Thursday, January 30, 2014
Not Yet - But Soon
It has been 3 months since I posted here. I apologize to those who have relied on this as the source of information related to Harper and her battle with cancer.
The past 3 months have been a repeating cycle, a bit like the movie Groundhog Day.
Get chemo - counts drop
Give Neupogen - white stay low
Give blood and/or platelets - those counts improve
Give more Neupogen - whites slowly rise
Get more chemo - counts drop again
Repeat
10 long rounds. 3-4 weeks each. Chemo, vomiting, Neupogen, blood, platelets, more vomiting, more Neupogen, repeat.
Last week she got the last big infusion. Round 10. The end of the roadmap we started on in May.
But is this the end? Have we reached the light we've been chasing? Or is there still ground to cover?
Next week we get another set of scans. Every set of scans has shown improvement. The prayer is this will be the same.
What could be in front of us? Likely - radiation. The tumors in her liver were so large and advanced, it seems unlikely they are completely gone with just the chemo. Greatly reduced in size? Yes. Gone? No.
So, likely, we will be looking at shooting radiation at Harper, hopefully killing mostly tumor cells without irradiating healthy tissue.
I hate the idea of radiation. I hate the idea that we will (in layman, simplified, and likely uneducated terms) expose Harper to a nuclear bomb. The same energy that kills being used to save.
Yes, it's very measured doses. Yes, it would likely be extremely focused, but still not my favorite idea in the world.
But, as with everything Harper has endured, the end goal trumps almost all else. Getting her healthy, free from this cancer is the only things that matters. Ridding her little, happy, cheerful (despite this agony) body of this demon.
The week following the scan we will sit down with the oncology team and discuss the next steps. We'll learn what we do next on our path.
So, we travel on. The scenery will potentially change, but the epic journey continues.
We tempt ourselves, occasionally, and spend time thinking about how life will be after treatment ends. We consider how we should celebrate. We contemplate a return to family vacations. We wonder what it will be like to help Harper re-adjust to going to school each morning (and not sleeping until 10). But only for fleeting moments. Let's not get ahead of ourselves. There are still miles to go. No planning yet - just teasing at this point. Wonderful teasing...
But... We're getting there. We can see the light. We can almost taste the normalcy. We think we can hear the cheers, the shouts, the joy in the air.
Confidence is building.
Victory.
Not yet. But soon.
The past 3 months have been a repeating cycle, a bit like the movie Groundhog Day.
Get chemo - counts drop
Give Neupogen - white stay low
Give blood and/or platelets - those counts improve
Give more Neupogen - whites slowly rise
Get more chemo - counts drop again
Repeat
10 long rounds. 3-4 weeks each. Chemo, vomiting, Neupogen, blood, platelets, more vomiting, more Neupogen, repeat.
Last week she got the last big infusion. Round 10. The end of the roadmap we started on in May.
But is this the end? Have we reached the light we've been chasing? Or is there still ground to cover?
Next week we get another set of scans. Every set of scans has shown improvement. The prayer is this will be the same.
What could be in front of us? Likely - radiation. The tumors in her liver were so large and advanced, it seems unlikely they are completely gone with just the chemo. Greatly reduced in size? Yes. Gone? No.
So, likely, we will be looking at shooting radiation at Harper, hopefully killing mostly tumor cells without irradiating healthy tissue.
I hate the idea of radiation. I hate the idea that we will (in layman, simplified, and likely uneducated terms) expose Harper to a nuclear bomb. The same energy that kills being used to save.
Yes, it's very measured doses. Yes, it would likely be extremely focused, but still not my favorite idea in the world.
But, as with everything Harper has endured, the end goal trumps almost all else. Getting her healthy, free from this cancer is the only things that matters. Ridding her little, happy, cheerful (despite this agony) body of this demon.
The week following the scan we will sit down with the oncology team and discuss the next steps. We'll learn what we do next on our path.
So, we travel on. The scenery will potentially change, but the epic journey continues.
We tempt ourselves, occasionally, and spend time thinking about how life will be after treatment ends. We consider how we should celebrate. We contemplate a return to family vacations. We wonder what it will be like to help Harper re-adjust to going to school each morning (and not sleeping until 10). But only for fleeting moments. Let's not get ahead of ourselves. There are still miles to go. No planning yet - just teasing at this point. Wonderful teasing...
But... We're getting there. We can see the light. We can almost taste the normalcy. We think we can hear the cheers, the shouts, the joy in the air.
Confidence is building.
Victory.
Not yet. But soon.
Tuesday, October 29, 2013
A Killer On The Loose
Every 6 hours, a killer takes another life. Four times every day, this ruthless and heartless maniac steals the life of an innocent child. Yet, no alarm sounds. No all points bulletin is issued. No man-hunt is mounted. No warrant for arrest.
If an individual person was perpetrating these heinous crimes, there would be a response. Police would swarm. Government officials would demand action. The public would cry out for justice.
But we plod on in our daily lives and there is silence - a quiet apathy to the ravaging damage to families; to parents; to children.
Every 6 hours, a child dies from cancer. During your long day at work, likely 2 kids succumb and are unable to fight on. While you sleep tonight, another family has a precious gift taken from them, and the world is robbed of what miracles they might have contributed to humanity.
And yet, we have a system that could, with proper focus and intent, produce justice; could bring about an end to the travesty occurring in the lives of so many children. But it sits idle, focusing elsewhere.
I generally believe in a free market - but the "market" of drug development is crippled by the financials of childhood cancer. While so many die and could use new therapies, new drugs, new treatments - the numbers just don't add up.
New drugs cost hundreds of millions of dollars (on average $800 million) to bring to market - and drug manufacturers are generally run by smart business people. If there are only a few hundred or even a few thousand people a year who will end up "buying" their product, they know that they will likely not recoup their huge investment. So, bright minds in the medical research industry focus on diseases of the the masses, ignoring the few.
Only 4% of all government-funded cancer research focuses on childhood cancer. That means we put 96% of all of our cancer research funding into extending lives of people who have had much more chance to live. It sounds callous, but we are spending a majority of our money researching treatments for the old, and allowing the young to die.
The products that Harper is receiving for her Wilms treatment were introduced in 1959, 1963, 1967, and 1983. That means her newest therapy was introduced 30 years ago. How far have other cancer therapies progressed in the last 30 years?
This demon haunts the rooms of the most innocent, and we sit back and let it happen, without outcry that reflects the enormity of the injustice.
There's a killer on the loose. Someone, somewhere needs to come up with a way to stop it.
If an individual person was perpetrating these heinous crimes, there would be a response. Police would swarm. Government officials would demand action. The public would cry out for justice.
But we plod on in our daily lives and there is silence - a quiet apathy to the ravaging damage to families; to parents; to children.
Every 6 hours, a child dies from cancer. During your long day at work, likely 2 kids succumb and are unable to fight on. While you sleep tonight, another family has a precious gift taken from them, and the world is robbed of what miracles they might have contributed to humanity.
And yet, we have a system that could, with proper focus and intent, produce justice; could bring about an end to the travesty occurring in the lives of so many children. But it sits idle, focusing elsewhere.
I generally believe in a free market - but the "market" of drug development is crippled by the financials of childhood cancer. While so many die and could use new therapies, new drugs, new treatments - the numbers just don't add up.
New drugs cost hundreds of millions of dollars (on average $800 million) to bring to market - and drug manufacturers are generally run by smart business people. If there are only a few hundred or even a few thousand people a year who will end up "buying" their product, they know that they will likely not recoup their huge investment. So, bright minds in the medical research industry focus on diseases of the the masses, ignoring the few.
Only 4% of all government-funded cancer research focuses on childhood cancer. That means we put 96% of all of our cancer research funding into extending lives of people who have had much more chance to live. It sounds callous, but we are spending a majority of our money researching treatments for the old, and allowing the young to die.
The products that Harper is receiving for her Wilms treatment were introduced in 1959, 1963, 1967, and 1983. That means her newest therapy was introduced 30 years ago. How far have other cancer therapies progressed in the last 30 years?
This demon haunts the rooms of the most innocent, and we sit back and let it happen, without outcry that reflects the enormity of the injustice.
There's a killer on the loose. Someone, somewhere needs to come up with a way to stop it.
Monday, October 21, 2013
Getting Tired
We all say it. "I'm tired." Whether we mean physical fatigue or mental exhaustion, it is a common complaint among human beings.
Tired comes with age. It also comes with physical or emotional stress, and often a combination. Lack of proper sleep can also prompt us to tell others of our malaise.
But we're currently learning about another type of tired - one I personally wasn't familiar with before. It's not emotional tiredness, which we certainly are. It's a physical tiredness, but not the kind you might initially think of.
Harper was diagnosed on May 15. Not long after, she started chemo. On that day, and for many days following, we have pumped fluids filled with drugs into her bloodstream. Drugs that are technically poisons, causing cell death - but strangely that's what we're hoping for.
Initially, Harper reacted rather miraculously to the chemo. Or rather, she didn't react, physically, like was anticipated. Most people lose their hair (check) and experience extreme nausea (no check). Harper didn't really experience nausea. We medicated with Zofran before and after the chemo (a wonder drug, by the way) and she really never got too sick. At least not like we feared. The nurses and doctors were amazed at her strength.
Then we took a chemo hiatus (after 4 rounds) and Harper had her kidney out. Her hair started to grow back. After the initial pain and discomfort from the surgery, Harper was looking good. Then we started back to chemo.
Since re-initiating chemo, we are starting to see signs of less and less resiliency with Harper. Her blood counts (especially her white cells) react far more violently to the chemo. In fact, her 6th round of chemo was delayed a week, waiting for her whites to come back up on their own. In the end we did some Neupogen to get them back up. We expect to use a lot more Neupogen going forward.
She also has been much more nauseous, vomiting often. Her appetite is waning again, and I'm not surprised given how upset her stomach has obviously been. And the nausea is prolonged - lasting days and days after chemo - not resolving quickly like before.
All in all, her body seems to be indicating - "I'm tired." Dealing with the infused poison is becoming a major battle, and Harper's little body is showing signs of battle fatigue.
We are 4 rounds from the end of the chemo course laid out. If we're lucky, that will be it. Just 12 more weeks (assuming no additional delays) and then her body can rest. And she's certainly due a vacation. She deserves it.
Until then, we carry on. 3-4 clinic visits a week, checking counts, getting chemo, conducting CT scans, administering breathing treatments... No wonder - with all that - we're all tired.
Tired comes with age. It also comes with physical or emotional stress, and often a combination. Lack of proper sleep can also prompt us to tell others of our malaise.
But we're currently learning about another type of tired - one I personally wasn't familiar with before. It's not emotional tiredness, which we certainly are. It's a physical tiredness, but not the kind you might initially think of.
Harper was diagnosed on May 15. Not long after, she started chemo. On that day, and for many days following, we have pumped fluids filled with drugs into her bloodstream. Drugs that are technically poisons, causing cell death - but strangely that's what we're hoping for.
Initially, Harper reacted rather miraculously to the chemo. Or rather, she didn't react, physically, like was anticipated. Most people lose their hair (check) and experience extreme nausea (no check). Harper didn't really experience nausea. We medicated with Zofran before and after the chemo (a wonder drug, by the way) and she really never got too sick. At least not like we feared. The nurses and doctors were amazed at her strength.
Then we took a chemo hiatus (after 4 rounds) and Harper had her kidney out. Her hair started to grow back. After the initial pain and discomfort from the surgery, Harper was looking good. Then we started back to chemo.
Since re-initiating chemo, we are starting to see signs of less and less resiliency with Harper. Her blood counts (especially her white cells) react far more violently to the chemo. In fact, her 6th round of chemo was delayed a week, waiting for her whites to come back up on their own. In the end we did some Neupogen to get them back up. We expect to use a lot more Neupogen going forward.
She also has been much more nauseous, vomiting often. Her appetite is waning again, and I'm not surprised given how upset her stomach has obviously been. And the nausea is prolonged - lasting days and days after chemo - not resolving quickly like before.
All in all, her body seems to be indicating - "I'm tired." Dealing with the infused poison is becoming a major battle, and Harper's little body is showing signs of battle fatigue.
We are 4 rounds from the end of the chemo course laid out. If we're lucky, that will be it. Just 12 more weeks (assuming no additional delays) and then her body can rest. And she's certainly due a vacation. She deserves it.
Until then, we carry on. 3-4 clinic visits a week, checking counts, getting chemo, conducting CT scans, administering breathing treatments... No wonder - with all that - we're all tired.
Wednesday, October 16, 2013
She is still here
This is my first post in more than a month. When I started to write at the beginning of Harper's cancer journey, it was therapy for me. It was an outlet for emotions that I could not easily show or express in front of her. It also acted as a communication method for some of those in our lives who began following the story and support us.
It seems such a long time ago now, but this all started a mere 5 months ago. During that time we've experienced multiple surgeries, 6 rounds of chemo, multiple CT scans, echos and ultrasounds, and literally countless blood tests.
Harper has withdrawn and returned to us (emotionally) several times. She has lost her hair, been kept from school and been robbed the innocence of just being a "normal" kid. Everywhere we go, she is different. When we're in public, she often wears hats to hide her head. Generally only with friends she is comfortable with does she bare her scalp. (Though her confidence and comfort with her physical appearance has improved).
The chemo that she once surprisingly seemed to be immune to (side effects) are now taking their toll. My personal guess is that the removal of her kidney has reduced her body's ability to remove the drugs as quickly as they did before, and now the chemo is doing what we expected all along. She is much more nauseous now, though the drugs are the same.
All of this can be tiresome, troubling, and disheartening - until I think of one simple thought - She's still here.
When were initially told the diagnosis, we wept. Not just cried - wept. Physically shaking, tears flowing, holding each other (Melissa and I) left alone in a room, away from Harper. We looked in each other's eyes, and wordlessly both acknowledged what we had feared since admission - we could lose her. But, she's still here.
The pathology is good. Almost total necrosis. The drugs are working. The poison we allow them to pump into her veins, that causes her hair to fall out, that (now) makes her nauseous, that drains her of energy and spirit, and could be permanently damaging her in ways we may not understand for years - it's working.
Others are not so lucky. We have watched, on Facebook especially, other children with cancer fight, and lose. We have watched others fight as valiantly and as courageously as Harper, and go on to a better place.
But she is still here.
We still have much road ahead. Even once the current treatment plan is done, and even if we are "cleared" around New Years (as is our current hope) we will wonder, worry, and stress over the next scan, and the next, and the next, never being completely confident that it won't come back.
But, for now, she is still here. And we have hope. Hope that despite the odds (which have never been great) that Harper will win. Hope that she will emerge victorious against the physical demon that is cancer. Hope for Harper.
She is still here.
And so are we.
Tired, troubled and disheartened at times, but lifted up and revived by our family, our friends, and Harper herself. But we are here, for her.
And if we're lucky, we will say for years to come - She is still here.
It seems such a long time ago now, but this all started a mere 5 months ago. During that time we've experienced multiple surgeries, 6 rounds of chemo, multiple CT scans, echos and ultrasounds, and literally countless blood tests.
Harper has withdrawn and returned to us (emotionally) several times. She has lost her hair, been kept from school and been robbed the innocence of just being a "normal" kid. Everywhere we go, she is different. When we're in public, she often wears hats to hide her head. Generally only with friends she is comfortable with does she bare her scalp. (Though her confidence and comfort with her physical appearance has improved).
The chemo that she once surprisingly seemed to be immune to (side effects) are now taking their toll. My personal guess is that the removal of her kidney has reduced her body's ability to remove the drugs as quickly as they did before, and now the chemo is doing what we expected all along. She is much more nauseous now, though the drugs are the same.
All of this can be tiresome, troubling, and disheartening - until I think of one simple thought - She's still here.
When were initially told the diagnosis, we wept. Not just cried - wept. Physically shaking, tears flowing, holding each other (Melissa and I) left alone in a room, away from Harper. We looked in each other's eyes, and wordlessly both acknowledged what we had feared since admission - we could lose her. But, she's still here.
The pathology is good. Almost total necrosis. The drugs are working. The poison we allow them to pump into her veins, that causes her hair to fall out, that (now) makes her nauseous, that drains her of energy and spirit, and could be permanently damaging her in ways we may not understand for years - it's working.
Others are not so lucky. We have watched, on Facebook especially, other children with cancer fight, and lose. We have watched others fight as valiantly and as courageously as Harper, and go on to a better place.
But she is still here.
We still have much road ahead. Even once the current treatment plan is done, and even if we are "cleared" around New Years (as is our current hope) we will wonder, worry, and stress over the next scan, and the next, and the next, never being completely confident that it won't come back.
But, for now, she is still here. And we have hope. Hope that despite the odds (which have never been great) that Harper will win. Hope that she will emerge victorious against the physical demon that is cancer. Hope for Harper.
She is still here.
And so are we.
Tired, troubled and disheartened at times, but lifted up and revived by our family, our friends, and Harper herself. But we are here, for her.
And if we're lucky, we will say for years to come - She is still here.
Sunday, September 15, 2013
Amazing
Harper continues to surprise us, though I suppose if I were smart, I'd stop being surprised. As has been her pattern, she handled the most recent chemo round (her first since her kidney removal surgery) better than could be expected. She's had a little nausea here and there, and she did vomit once in the hospital before coming home, but by and large, she seems relatively un-phased.
We've learned not to underestimate her willpower, and her desire, it would seem, to live a "normal" life. Close friends of ours and their daughters joined us today (Sunday). They were up for anything, and so, it seems, was Harper.
We started with sushi (Harper's suggestion). It was really hibachi with sushi added in, but as wild as it seems, it's one of Harper's favorite foods (second to Skyline, of course).
After our bellies were full, we explored the Falls of the Ohio park, including walking around down on the fossil beds. With the river down and the spillway closed, there was a lot of space to roam, and Harper kept up, if not led the pack. She event climbed up and down piles of rocks. It was hard to tell she'd had had chemo just 48 hour prior.
Next we ventured to the other side of the Ohio to the Mcalpin Locks, where we waited and watched a river barge maneuver through the locks headed downriver. Having not seen it before, it was interesting, but in actuality, there's not much to actually "see".
We then rewarded ourselves for our hard barge-watching with ice cream from Polly's Freeze. Yum. Not good for the waste line, but definitely good for the soul. Sad that they will be closing for the season next weekend, but it just makes their reopening in the spring that much sweeter.
Through it all, Harper pushed through, rarely complaining. She enjoyed herself. She enjoyed playing with her sisters and her friends.
I am continually surprised by her - her strength - her calm - her general positivity. I don't know if I could be the person she is if I were in her shoes. She truly is amazing, and I thank God for allowing us to keep her - hopefully a long while longer.
We've learned not to underestimate her willpower, and her desire, it would seem, to live a "normal" life. Close friends of ours and their daughters joined us today (Sunday). They were up for anything, and so, it seems, was Harper.
We started with sushi (Harper's suggestion). It was really hibachi with sushi added in, but as wild as it seems, it's one of Harper's favorite foods (second to Skyline, of course).
After our bellies were full, we explored the Falls of the Ohio park, including walking around down on the fossil beds. With the river down and the spillway closed, there was a lot of space to roam, and Harper kept up, if not led the pack. She event climbed up and down piles of rocks. It was hard to tell she'd had had chemo just 48 hour prior.
Next we ventured to the other side of the Ohio to the Mcalpin Locks, where we waited and watched a river barge maneuver through the locks headed downriver. Having not seen it before, it was interesting, but in actuality, there's not much to actually "see".
We then rewarded ourselves for our hard barge-watching with ice cream from Polly's Freeze. Yum. Not good for the waste line, but definitely good for the soul. Sad that they will be closing for the season next weekend, but it just makes their reopening in the spring that much sweeter.
Through it all, Harper pushed through, rarely complaining. She enjoyed herself. She enjoyed playing with her sisters and her friends.
I am continually surprised by her - her strength - her calm - her general positivity. I don't know if I could be the person she is if I were in her shoes. She truly is amazing, and I thank God for allowing us to keep her - hopefully a long while longer.
Thursday, September 5, 2013
Good News
Today was a day for follow-up doctor appointments. Almost completely good news.
We met with both the oncologist and the surgeon.
The surgeon is happy with her progress. She got out of the hospital following surgery faster than expected, and has recovered faster than most who undergo the surgery she experienced. Just a few more days (3 weeks from surgery to be exact) and she'll release her to continue chemo.
The oncologist had the best news, with a small dose of scary news. First, the good news.
She confirmed the tumor tissue removed during surgery shows 99+% necrosis. This means the chemo is WORKING. This is absolutely awesome to hear. She is very happy (as are we) with Harper's progress. She wants to start back up on chemo, as soon as the surgeon releases her. So, likely later next week.
The small dose of scary news is that we are starting to talk about using some radiation. Specifically, radiation of the area where the kidney was removed - to help ensure we get all of the tumor tissue in that area. Fortunately, no talk about radiation of the liver.
The liver lesions are also showing a big reduction in size. While I don't recall the exact dimensional sizes we discussed during the appointment, I would estimate that between the 2nd and 3rd CT scans we saw a 40% reduction in liver tumor size. This makes me very happy.
We also confirmed that her lungs are clear. Only 2 small spots were noted, and the radiologists think its probably scar tissue. We'll continue to watch them in future scans to see if they change at all.
All in all, things are looking very positive. We continue to read about others battling this and other cancers that are not seeing the success we are. We feel very lucky. While anything can still happen - right now things are going in the right direction.
Thank you to all who have supported us - financially, emotionally, and prayerfully. We're almost halfway through the treatment plan. Please keep it up and (hopefully) we'll be talking about clear scans in 18-20 weeks.
We met with both the oncologist and the surgeon.
The surgeon is happy with her progress. She got out of the hospital following surgery faster than expected, and has recovered faster than most who undergo the surgery she experienced. Just a few more days (3 weeks from surgery to be exact) and she'll release her to continue chemo.
The oncologist had the best news, with a small dose of scary news. First, the good news.
She confirmed the tumor tissue removed during surgery shows 99+% necrosis. This means the chemo is WORKING. This is absolutely awesome to hear. She is very happy (as are we) with Harper's progress. She wants to start back up on chemo, as soon as the surgeon releases her. So, likely later next week.
The small dose of scary news is that we are starting to talk about using some radiation. Specifically, radiation of the area where the kidney was removed - to help ensure we get all of the tumor tissue in that area. Fortunately, no talk about radiation of the liver.
The liver lesions are also showing a big reduction in size. While I don't recall the exact dimensional sizes we discussed during the appointment, I would estimate that between the 2nd and 3rd CT scans we saw a 40% reduction in liver tumor size. This makes me very happy.
We also confirmed that her lungs are clear. Only 2 small spots were noted, and the radiologists think its probably scar tissue. We'll continue to watch them in future scans to see if they change at all.
All in all, things are looking very positive. We continue to read about others battling this and other cancers that are not seeing the success we are. We feel very lucky. While anything can still happen - right now things are going in the right direction.
Thank you to all who have supported us - financially, emotionally, and prayerfully. We're almost halfway through the treatment plan. Please keep it up and (hopefully) we'll be talking about clear scans in 18-20 weeks.
Thursday, August 29, 2013
Not Yet
Today, in the midst of our healing marathon with Harper, I took time out to attend the funeral of my (step) grandfather.
Bill "Cap" Flick was truly one of the kindest men I ever had the occasion to meet. He married my grandmother 8 years ago, just months before Harper was born. They were the cutest couple, her in her 70s and him in his 80s, both widowers, and quite obviously in love.
He entered my life just as Harper did. And now, he has exited. He had a long full life, living just 1 day shy of his 92nd birthday. But, as is happening to more and more of us, as we live longer and longer lives, dementia/Alzheimer's claimed him.
A disease of unexplainable origin claimed Cap from us. And another threatens Harper.
I fought, today, to keep my emotions in check at the funeral service and burial. But as I drove back home, to Louisville, I couldn't keep the ideas of a funeral and Harper separated.
Cap was a kind man, who loved life, loved to laugh, and was beloved by so many. You could substitute Harper's name in that sentence and it would be no less true.
I know that I cannot change what will come to be in the coming months and years. God's Will will be done with Harper, and she is in his hands through this battle. But I can't help but raise a defiant voice, even if its just in my mind as I pray, to say "Not Yet."
It's not time yet. Harper has not had the opportunity to live a long, happy life; to love another as a companion and soul mate; to travel, or stay home (whichever she chooses); to find and develop her passion (be it horses (likely) or something else); to grow old.
Harper is doing so well with her treatment. She has shown incredible strength. The tumor pathology showed almost complete positive reaction to the chemo. Her amazingly quick surgical recovery has strengthened our hope for a complete victory.
But the nagging comparison between Cap and Harper remains in my mind, and pushes thoughts and visions of a funeral for Harper into my mind, against my will. I have to push them back out and say Not Yet.
We each will pass from this earth when it is our time; when God calls us home. We each will deal with the pain, many times over, of losing a close loved one. Some will be sooner than expected or wished. But for Harper, Not Yet.
There are times, when pity sneaks in, and I question my resolve, and my belief in certain recovery - more often then I care to admit. But deep down, past the fear, the doubt, the uncertainty, the worry and the pain, I hear clearly - Not Yet. And that statement drives me forward.
I truly believe it is not Harper's time. I believe God has more in store for this precious little girl.
There will be a day when Harper is laid to rest. There will be a time when loved ones will mourn in her passing, and celebrate her finished life. There will be a time when God calls her home, as he will with us all.
But Dear Lord, just Not Yet.
Bill "Cap" Flick was truly one of the kindest men I ever had the occasion to meet. He married my grandmother 8 years ago, just months before Harper was born. They were the cutest couple, her in her 70s and him in his 80s, both widowers, and quite obviously in love.
He entered my life just as Harper did. And now, he has exited. He had a long full life, living just 1 day shy of his 92nd birthday. But, as is happening to more and more of us, as we live longer and longer lives, dementia/Alzheimer's claimed him.
A disease of unexplainable origin claimed Cap from us. And another threatens Harper.
I fought, today, to keep my emotions in check at the funeral service and burial. But as I drove back home, to Louisville, I couldn't keep the ideas of a funeral and Harper separated.
Cap was a kind man, who loved life, loved to laugh, and was beloved by so many. You could substitute Harper's name in that sentence and it would be no less true.
I know that I cannot change what will come to be in the coming months and years. God's Will will be done with Harper, and she is in his hands through this battle. But I can't help but raise a defiant voice, even if its just in my mind as I pray, to say "Not Yet."
It's not time yet. Harper has not had the opportunity to live a long, happy life; to love another as a companion and soul mate; to travel, or stay home (whichever she chooses); to find and develop her passion (be it horses (likely) or something else); to grow old.
Harper is doing so well with her treatment. She has shown incredible strength. The tumor pathology showed almost complete positive reaction to the chemo. Her amazingly quick surgical recovery has strengthened our hope for a complete victory.
But the nagging comparison between Cap and Harper remains in my mind, and pushes thoughts and visions of a funeral for Harper into my mind, against my will. I have to push them back out and say Not Yet.
We each will pass from this earth when it is our time; when God calls us home. We each will deal with the pain, many times over, of losing a close loved one. Some will be sooner than expected or wished. But for Harper, Not Yet.
There are times, when pity sneaks in, and I question my resolve, and my belief in certain recovery - more often then I care to admit. But deep down, past the fear, the doubt, the uncertainty, the worry and the pain, I hear clearly - Not Yet. And that statement drives me forward.
I truly believe it is not Harper's time. I believe God has more in store for this precious little girl.
There will be a day when Harper is laid to rest. There will be a time when loved ones will mourn in her passing, and celebrate her finished life. There will be a time when God calls her home, as he will with us all.
But Dear Lord, just Not Yet.
Sunday, August 25, 2013
Phase 2
We're on Day 4 post surgery, and things are going well. Harper is getting up and walking around. They are slowly lowering her BP med dosage (having already reduced it to one med from two) and her pain meds are being lowered as well.
She has only had liquids to eat so far, but things are improving there too. The surgical team, when rounding this AM, indicated we could start her on soft foods. I'm thrilled, because even though she isn't begging for food yet, I don't want her albumin levels to get low like last time. Eating will help prevent that, I hope.
Once she's eating, and her GI tract starts to normalize, then I suspect we'll start talking about when we can go home. The surgeon said, before the surgery, she expected us to be here a week - and my guess is we'll be very close to that.
This surgery was HUGE on her road to beating the cancer. The kidney they removed was almost undoubtedly the "source" of the cancer, and was also the largest grouping of cancer cells in one place in her body. But we still have a long road of additional chemo ahead (lasting AT LEAST until Christmas). We're only halfway there (at best).
As we recover from the surgical procedure, we are thinking about what is next. We are focusing on planning for what happens after we get home. We are starting to think about phase 2.
To help offer some solace to her and to ourselves we've all along focused on the fact that you can easily survive and lead a very normal life with just 1 kidney. The surgeon, during our consult prior to surgery, said "For most things that are important, God gives you two." Harper quickly pointed out that he doesn't give you two hearts or two brains, which the surgeon conceded. That little girl is just too smart.
Then, after the surgery, we sat down with the nephrologist. We hadn't seen him since her last hospitalization, and he indicated that the hospital's medical records system was giving him trouble trying to pull up the detail from our previous hospitalization (thank you EPIC), so we had to refresh his memory. After that, he also reminded us that people live very normal lives with one kidney, and, in fact, that the remaining kidney will actually increase in size (very slowly) to help compensate and pick up the slack.
Then, he nicely told us the things to avoid... The things that posed a greater danger to her than to others. We started with drugs. Specifically, that there is one chemo drug we're using (cyclophosphamide) which is nephrotoxic. I don't think we'll stop using it (her current cocktail is showing good results) but we'll have to watch it much closer.
Then came "activities." Swimming is fine, but no diving. Soccer is okay, but no rugby. Running tack is ok, but no high hurdles. Riding a bike, with normal head protection, is ok - but no motocross - and no ATVs (handlebars are a big problem in accidents). Horseback riding is fine, but no jumping big obstacles. Basically, normal activities are fine - but things that have a higher risk of impact to her remaining kidney (which could leave her with NO kidneys) should be avoided.
Harper is like a cat with only 2 lives. And they just removed one of them. We have to be really careful to protect the remaining one. And that will mean saying no to some things that I'd much rather say yes to. Not today, of course, as we continue to help her back and forth to the bathroom. But there will be things that come that we will say yes to her sisters, and no to her. It's going to be hard.
When all of this has passed... When Harper is "cured", her hair is back, she's back in school, and life is back to "normal" (even a new normal) - there will forever be reminders of this experience. Long lasting impacts, some of which we can't even fathom yet. But I'm looking forward to getting there.
But for today, we focus on eating. Lets get some soft foods in her. Lets get that GI tract going. Lets get up and walk around. Let's get her home.
Let's stop sitting around (if we don't need to).
Let's get going on phase 2.
She has only had liquids to eat so far, but things are improving there too. The surgical team, when rounding this AM, indicated we could start her on soft foods. I'm thrilled, because even though she isn't begging for food yet, I don't want her albumin levels to get low like last time. Eating will help prevent that, I hope.
Once she's eating, and her GI tract starts to normalize, then I suspect we'll start talking about when we can go home. The surgeon said, before the surgery, she expected us to be here a week - and my guess is we'll be very close to that.
This surgery was HUGE on her road to beating the cancer. The kidney they removed was almost undoubtedly the "source" of the cancer, and was also the largest grouping of cancer cells in one place in her body. But we still have a long road of additional chemo ahead (lasting AT LEAST until Christmas). We're only halfway there (at best).
As we recover from the surgical procedure, we are thinking about what is next. We are focusing on planning for what happens after we get home. We are starting to think about phase 2.
To help offer some solace to her and to ourselves we've all along focused on the fact that you can easily survive and lead a very normal life with just 1 kidney. The surgeon, during our consult prior to surgery, said "For most things that are important, God gives you two." Harper quickly pointed out that he doesn't give you two hearts or two brains, which the surgeon conceded. That little girl is just too smart.
Then, after the surgery, we sat down with the nephrologist. We hadn't seen him since her last hospitalization, and he indicated that the hospital's medical records system was giving him trouble trying to pull up the detail from our previous hospitalization (thank you EPIC), so we had to refresh his memory. After that, he also reminded us that people live very normal lives with one kidney, and, in fact, that the remaining kidney will actually increase in size (very slowly) to help compensate and pick up the slack.
Then, he nicely told us the things to avoid... The things that posed a greater danger to her than to others. We started with drugs. Specifically, that there is one chemo drug we're using (cyclophosphamide) which is nephrotoxic. I don't think we'll stop using it (her current cocktail is showing good results) but we'll have to watch it much closer.
Then came "activities." Swimming is fine, but no diving. Soccer is okay, but no rugby. Running tack is ok, but no high hurdles. Riding a bike, with normal head protection, is ok - but no motocross - and no ATVs (handlebars are a big problem in accidents). Horseback riding is fine, but no jumping big obstacles. Basically, normal activities are fine - but things that have a higher risk of impact to her remaining kidney (which could leave her with NO kidneys) should be avoided.
Harper is like a cat with only 2 lives. And they just removed one of them. We have to be really careful to protect the remaining one. And that will mean saying no to some things that I'd much rather say yes to. Not today, of course, as we continue to help her back and forth to the bathroom. But there will be things that come that we will say yes to her sisters, and no to her. It's going to be hard.
When all of this has passed... When Harper is "cured", her hair is back, she's back in school, and life is back to "normal" (even a new normal) - there will forever be reminders of this experience. Long lasting impacts, some of which we can't even fathom yet. But I'm looking forward to getting there.
But for today, we focus on eating. Lets get some soft foods in her. Lets get that GI tract going. Lets get up and walk around. Let's get her home.
Let's stop sitting around (if we don't need to).
Let's get going on phase 2.
Wednesday, August 21, 2013
Sometimes You Just Need Your Mommy
The day finally arrived. The doctors finally agreed it was time. The scans showed improvement - chemo had done its (initial) job. Harper's lungs are almost cleared, her liver tumors improved (smaller) and her kidney tumor reduced. It was time to take the kidney.
We had been waiting for that news for months. Originally, we thought we might be able to get the kidney removed after 2 rounds of chemo - 6 weeks in. Scans at that point showed improvement in the lungs and kidney, but no definitive improvement in the liver - and the liver was in the way.
To get at the affected kidney, they have to move the intestines and liver to the side. That's not easy to do when the liver is swollen with tumors. A complication. And with the tumors showing a positive reaction to the chemo, not a complicating risk the surgeons were willing to take just yet.
So, we did another 2 rounds (6 weeks) of chemo, and scanned again. This time - we were a go.
Now, we were excited, as we'd been hoping for the surgery. We'd been waiting to take out the "source" of the cancer. But, now we had major surgery staring us in the face. We asked for it - now we got it.
The morning came. We were walking calmly out the door at just after 7 when the hospital called wondering where we were. Our arrival time is at 8, right? Nope. Turns out they changed it to 7 - didn't tell us.
So, a normal drive in turned into an 85 mph adventure that my mother-in-law would probably like to forget. (Sorry about that!)
We arrived. We checked in. We went up to the surgical floor. Harper changed into her robe. They pumped her full of meds. She fell quickly to sleep. We did not. They wheeled her out of our view. We were no longer in control.
We waited. The OR actually called my cell every hour during the surgery. Small comfort, as they really didn't tell us much, but a nice gesture all the same.
Finally, she was done. It went well. They took the kidney (as planned). They left the adrenal gland (a plus). No unexpected complications. She didn't need blood. All good news.
Then to ICU. Harper's not a quick wake-er-up-er (no one in the family is) so it took longer than they expected for her to come out of the anesthesia. But, she finally did - and she was in pain.
Hours passed of attempting to manage the pain. All the while, her blood pressure was up. The last time we were in the ICU, it was because her blood pressure was WAY up. Not as bad this time, but still worrisome considering her new wounds.
Was it pain? Anxiety? Body reacting to all the stimulus and the lack of a major organ that helps regulate blood pressure? Who knows?
They monkeyed with her pain meds. They increased her Dilaudid dosage twice - which is in her PCA pump (patient-controlled-analgesia - the magic button). They've added fentanyl and Ativan as well, attempting to keep her calm and further control her pain.
After being in the ICU for more than 5 hours, I believe we've finally gotten the pain monster under control. She is resting relatively comfortably, with Melissa holding her hand.
Melissa has not been allowed to leave her side. Melissa is not allowed to let go of her hand. As soon as they wheeled her into her ICU room, she was asking for Mommy. I was rebuffed multiple times, until Mommy was at her side, and then I was allowed only as an addition, not ever as a replacement.
I was allowed (by Harper) to leave and go home and check on her sisters. Mommy was barely allowed to go use the restroom. I'm currently sitting in a chair, reclining, typing and watching the monitor that shows her vitals. Melissa is uncomfortably sitting in a chair next to her bed, holding her hand and attempting to lay her head on the bed to get a little rest.
It's ok, though. This little girl has been through a lot. Today she allowed a bunch of people she doesn't know to cut a hole in her from her sternum to her pelvis, root around in her insides and take a major organ out of her. She's due to spill some tears. She deserves to be a little cranky. And it's understandable she wants her Mommy.
Sometimes you need pain meds. Sometimes you need anxiety meds. Sometimes you need blood pressure meds.
And sometimes, you just need your Mommy.
We had been waiting for that news for months. Originally, we thought we might be able to get the kidney removed after 2 rounds of chemo - 6 weeks in. Scans at that point showed improvement in the lungs and kidney, but no definitive improvement in the liver - and the liver was in the way.
To get at the affected kidney, they have to move the intestines and liver to the side. That's not easy to do when the liver is swollen with tumors. A complication. And with the tumors showing a positive reaction to the chemo, not a complicating risk the surgeons were willing to take just yet.
So, we did another 2 rounds (6 weeks) of chemo, and scanned again. This time - we were a go.
Now, we were excited, as we'd been hoping for the surgery. We'd been waiting to take out the "source" of the cancer. But, now we had major surgery staring us in the face. We asked for it - now we got it.
The morning came. We were walking calmly out the door at just after 7 when the hospital called wondering where we were. Our arrival time is at 8, right? Nope. Turns out they changed it to 7 - didn't tell us.
So, a normal drive in turned into an 85 mph adventure that my mother-in-law would probably like to forget. (Sorry about that!)
We arrived. We checked in. We went up to the surgical floor. Harper changed into her robe. They pumped her full of meds. She fell quickly to sleep. We did not. They wheeled her out of our view. We were no longer in control.
We waited. The OR actually called my cell every hour during the surgery. Small comfort, as they really didn't tell us much, but a nice gesture all the same.
Finally, she was done. It went well. They took the kidney (as planned). They left the adrenal gland (a plus). No unexpected complications. She didn't need blood. All good news.
Then to ICU. Harper's not a quick wake-er-up-er (no one in the family is) so it took longer than they expected for her to come out of the anesthesia. But, she finally did - and she was in pain.
Hours passed of attempting to manage the pain. All the while, her blood pressure was up. The last time we were in the ICU, it was because her blood pressure was WAY up. Not as bad this time, but still worrisome considering her new wounds.
Was it pain? Anxiety? Body reacting to all the stimulus and the lack of a major organ that helps regulate blood pressure? Who knows?
They monkeyed with her pain meds. They increased her Dilaudid dosage twice - which is in her PCA pump (patient-controlled-analgesia - the magic button). They've added fentanyl and Ativan as well, attempting to keep her calm and further control her pain.
After being in the ICU for more than 5 hours, I believe we've finally gotten the pain monster under control. She is resting relatively comfortably, with Melissa holding her hand.
Melissa has not been allowed to leave her side. Melissa is not allowed to let go of her hand. As soon as they wheeled her into her ICU room, she was asking for Mommy. I was rebuffed multiple times, until Mommy was at her side, and then I was allowed only as an addition, not ever as a replacement.
I was allowed (by Harper) to leave and go home and check on her sisters. Mommy was barely allowed to go use the restroom. I'm currently sitting in a chair, reclining, typing and watching the monitor that shows her vitals. Melissa is uncomfortably sitting in a chair next to her bed, holding her hand and attempting to lay her head on the bed to get a little rest.
It's ok, though. This little girl has been through a lot. Today she allowed a bunch of people she doesn't know to cut a hole in her from her sternum to her pelvis, root around in her insides and take a major organ out of her. She's due to spill some tears. She deserves to be a little cranky. And it's understandable she wants her Mommy.
Sometimes you need pain meds. Sometimes you need anxiety meds. Sometimes you need blood pressure meds.
And sometimes, you just need your Mommy.
Tuesday, August 6, 2013
We Are Not Special
The past 2 months have been a roller coaster ride. Ups, down, sideways, and never in the direction we expect. But one thing has emerged as a common theme, and it's not on the surface. We are not special in our fight against cancer.
Sure, my daughter has cancer. Yes, her prognosis is not assured to be positive. So, perhaps I have a right to be a little pitiful. Maybe it's my place to take some sympathy. Maybe...
But our situation is not unique. We are not the only family to be faced with a terrible diagnosis. We are not alone in our challenge of a dear loved member of our family being attacked by a disease we did not invite, infected for a reason we don't understand, with a future that is unsure. We are not special.
What's interesting to me is that countless times since this journey began I've been approached by people who, sometimes directly, sometimes with trepidation, share their personal story on cancer. Their mother had breast cancer and is a survivor. Their father was a relapse Hodgkin's lymphoma patient who lost their battle. Brothers, sisters, children. It goes on and on.
Yes, my child has cancer. No, her prognosis is not bright. And yes, I regret every statement I've made jokingly about having 3 kids so we have a spare. But we are not alone.
We have all, in some way, whether it appears large or small, whether it feels large or small, been affected by cancer in some way. Someone you know has had cancer. Maybe they beat it. Maybe they didn't. Either way, your life has been changed, altered, affected by cells that just don't know to stop.
I don't know why God allows cancer to be in our presence. I don't know why cancer is allowed to challenge the happiness of our lives. But I know that it is all too common. I know that it is all too painful. And I know, that we are not special.
And, truthfully, I wish we were.
Sure, my daughter has cancer. Yes, her prognosis is not assured to be positive. So, perhaps I have a right to be a little pitiful. Maybe it's my place to take some sympathy. Maybe...
But our situation is not unique. We are not the only family to be faced with a terrible diagnosis. We are not alone in our challenge of a dear loved member of our family being attacked by a disease we did not invite, infected for a reason we don't understand, with a future that is unsure. We are not special.
What's interesting to me is that countless times since this journey began I've been approached by people who, sometimes directly, sometimes with trepidation, share their personal story on cancer. Their mother had breast cancer and is a survivor. Their father was a relapse Hodgkin's lymphoma patient who lost their battle. Brothers, sisters, children. It goes on and on.
Yes, my child has cancer. No, her prognosis is not bright. And yes, I regret every statement I've made jokingly about having 3 kids so we have a spare. But we are not alone.
We have all, in some way, whether it appears large or small, whether it feels large or small, been affected by cancer in some way. Someone you know has had cancer. Maybe they beat it. Maybe they didn't. Either way, your life has been changed, altered, affected by cells that just don't know to stop.
I don't know why God allows cancer to be in our presence. I don't know why cancer is allowed to challenge the happiness of our lives. But I know that it is all too common. I know that it is all too painful. And I know, that we are not special.
And, truthfully, I wish we were.
Saturday, August 3, 2013
Almost
This morning Harper and I went to run a few errands. All I had to say to her was that I wanted her to go to the store with me. She didn't complain or gripe - it was like she wanted to go. It was almost like she was just a normal kid, and was open to anything.
First stop was Office Depot. We had a minor emergency at one point, as she was in the ladies restroom, and the toilet paper holder fell off the wall. She cried out for me. Fortunately, the store was pretty empty and it's a "1-holer" (and she hadn't locked the door!) - I ran in, fixed the toilet paper holder, and darted back out. It was a minor miracle it was that easy, and she recovered almost as if nothing had happened.
Our intent of visiting Office Depot was to get a cheap USB keyboard and mouse, so that I could hook up the old laptop (with a busted screen) so that the girls can use it for games and homework. We have a small flat-screen monitor, so we just needed a keyboard and mouse so we can leave the laptop lid closed and use it like we would a desktop. Scored a wireless keyboard and mouse set for $20.
Then we went to Target to look at a few things. We checked out the carpet cleaners (ours is falling apart) and small desks (so they can put the new laptop setup on it) to no avail. But, on our way out of the store, we ran into Holly, Harper's Girl Scout troop leader. She hugged Holly and Zoe (Holly's daughter and Harper's friend) and we chatted for a little while. Harper still showed some shyness, but she talked a little, and stood there patiently, smiling a bit, but still staring at the ground. I could almost imagine Harper running off for a moment with her friend to play.
We then ran quickly over to Home Depot to check out their carpet shampooers. We happened upon the kids activity, and then spent about 30 minutes building and painting a wooden truck. The lady running the sign-in desk asked Harper if she went to Camp Quality this summer. I was surprised at first, but then she explained that she volunteers at Camp Quality every summer. I explained that Harper was "too early" in her diagnosis this summer to go, though really I think the registration had ended by the time Harper was even diagnosed. She was very nice, hooked us up with a kit, and talked to us several times as we built it. We ran into Cadence's best friend, Jasmine, and her dad there too.
After leaving Home Depot, we then called home, and Melissa suggested we meet for lunch at Chick-fil-A. Harper and I killed time in the pet store next door, looking at fish, hamsters, mice and birds. She was in love with the little family of mice, which it looked like the babies had been born within the last few days. She observed as people bought fish. We also visited the cat rescue cage a couple times before wandering to Radio Shack next door, where we just perused the aisles and looked at the science kits they have. She almost asked for one, but then decided not to. I probably would have bought one if she'd asked.
Once Melissa arrived, Harper decided she didn't want Chick-fil-A, so she and I ate at Five Guys, while Melissa, Cadence and Finley ate at Chick-fil-A. Harper ordered a cheese dog, but after eating the melted cheese off of it, decided it wasn't as good as she'd remembered and said she wished we had gone to Chick-fil-A. While we were there, most people didn't stare, but one interesting gentleman walked up to us and asked "What happened to her hair." to which I responded "It fell out." He continued to follow us around the place for a few minutes, talking about how he has friends in the shriners, and how he lost a lung to cancer (pack of Camels conspicuously in his shirt pocket, by the way). After a couple of comments about getting a new government, he got his food, and departed. Harper really didn't respond to him the whole time, almost like he wasn't there.
We're home again now, and the three girls have been, a little noisily, playing Minecraft together in their room. They just went downstairs, and I hear the ice-shaver running. They must be making snow cones. It's almost like we're back to normal.
Almost.
First stop was Office Depot. We had a minor emergency at one point, as she was in the ladies restroom, and the toilet paper holder fell off the wall. She cried out for me. Fortunately, the store was pretty empty and it's a "1-holer" (and she hadn't locked the door!) - I ran in, fixed the toilet paper holder, and darted back out. It was a minor miracle it was that easy, and she recovered almost as if nothing had happened.
Our intent of visiting Office Depot was to get a cheap USB keyboard and mouse, so that I could hook up the old laptop (with a busted screen) so that the girls can use it for games and homework. We have a small flat-screen monitor, so we just needed a keyboard and mouse so we can leave the laptop lid closed and use it like we would a desktop. Scored a wireless keyboard and mouse set for $20.
Then we went to Target to look at a few things. We checked out the carpet cleaners (ours is falling apart) and small desks (so they can put the new laptop setup on it) to no avail. But, on our way out of the store, we ran into Holly, Harper's Girl Scout troop leader. She hugged Holly and Zoe (Holly's daughter and Harper's friend) and we chatted for a little while. Harper still showed some shyness, but she talked a little, and stood there patiently, smiling a bit, but still staring at the ground. I could almost imagine Harper running off for a moment with her friend to play.
We then ran quickly over to Home Depot to check out their carpet shampooers. We happened upon the kids activity, and then spent about 30 minutes building and painting a wooden truck. The lady running the sign-in desk asked Harper if she went to Camp Quality this summer. I was surprised at first, but then she explained that she volunteers at Camp Quality every summer. I explained that Harper was "too early" in her diagnosis this summer to go, though really I think the registration had ended by the time Harper was even diagnosed. She was very nice, hooked us up with a kit, and talked to us several times as we built it. We ran into Cadence's best friend, Jasmine, and her dad there too.
After leaving Home Depot, we then called home, and Melissa suggested we meet for lunch at Chick-fil-A. Harper and I killed time in the pet store next door, looking at fish, hamsters, mice and birds. She was in love with the little family of mice, which it looked like the babies had been born within the last few days. She observed as people bought fish. We also visited the cat rescue cage a couple times before wandering to Radio Shack next door, where we just perused the aisles and looked at the science kits they have. She almost asked for one, but then decided not to. I probably would have bought one if she'd asked.
Once Melissa arrived, Harper decided she didn't want Chick-fil-A, so she and I ate at Five Guys, while Melissa, Cadence and Finley ate at Chick-fil-A. Harper ordered a cheese dog, but after eating the melted cheese off of it, decided it wasn't as good as she'd remembered and said she wished we had gone to Chick-fil-A. While we were there, most people didn't stare, but one interesting gentleman walked up to us and asked "What happened to her hair." to which I responded "It fell out." He continued to follow us around the place for a few minutes, talking about how he has friends in the shriners, and how he lost a lung to cancer (pack of Camels conspicuously in his shirt pocket, by the way). After a couple of comments about getting a new government, he got his food, and departed. Harper really didn't respond to him the whole time, almost like he wasn't there.
We're home again now, and the three girls have been, a little noisily, playing Minecraft together in their room. They just went downstairs, and I hear the ice-shaver running. They must be making snow cones. It's almost like we're back to normal.
Almost.
Wednesday, July 31, 2013
Graduation
Well, July is coming to a close, and our journey continues into August. School will start tomorrow. For Finley and Cadence, it will be back to life as usual (or as usual as it can be) and Harper will be learning all about home-bound school.
Its been 2 & 1/2 months since the diagnosis. It is absolutely amazing to me that that much time has gone by. I'm not sure we're having fun, but it's flying. The school year was just winding down when she first went into the hospital.
Harper continues her chemo. This round (and the next) are weekly treatments. Fortunately, the first week is the only inpatient stay, with week 2 & 3 (of a 3-week round) just an outpatient visit to the clinic, where they push in the vincristine (which is pretty much like her daily flushes). We'll be back inpatient the week after next.
It's a little tough knowing Harper will basically start falling behind tomorrow. She won't be getting the same instruction as all her classmates. I mean, I'm sure she'll be able to catch up later, but she's never shown as much enthusiasm for learning and school as Cadence, and I worry for her. I worry that staying home she won't learn as quickly.
I'm afraid there'll be too many distractions. I'm afraid it will be too easy for her to put off her work, or find something else to do. I know Melissa will be on her - with the TV and Harper's iPad off limits until she does her school work, but there will be bad days. There will be days, probably following chemo, or for a pretty long stretch after surgery, where we'll lay off her, and she'll slip farther and farther behind.
But then I think about what she is learning. I think about the skills, strengths and attitude that her other classmates aren't learning. I don't wish those lessons on them - but I can't help but ponder the advantages that she may have because of her experience.
She knows what it is to fear for her life, and rise above it, learning to enjoy it, despite the fear. She knows what it's like to submit to something that she knows will be unpleasant - that will hurt, and still do it willingly, because the benefit outweighs the pain. She knows that there are some things that, while we hate them, are worth doing because of the greater end goal - even if that end goal is not certain.
She knows things now that any parent would wish to prevent their child from ever knowing, and yet... And yet she is stronger for it. I've seen in her the growth of emotional strength beyond that which many adults could muster. Not constant, mind you, but there, and growing.
I've seen determination, and even confidence when faced with standing out in a crowd, because of her bald head - and yet she knows she is pretty - on the outside and especially on the inside. And she knows it not because we told her. She knows it because she told herself. I see it.
When this is over, and if she wins... No. No, I keep saying that wrong. I keep showing a weakness she herself doesn't show.
When this is over, and she wins - when she beats this terrible disease - when she beats the odds, she will go on in life a wiser, stronger, more intelligent and cunning young lady than any of her peers. Her prospects will be better than any of her friends, because she will have the skills, strengths, and learned lessons few others will be able to boast - and they will help her on her journey to something great.
I don't know what that great something will be. But I know she will be it. I know she will.
And a few days of 3rd grade missed will be nothing.
Back to school for most - but for Harper, she never really left it - she just moved up to an advanced class on life. And I see an amazing graduation in her future.
Its been 2 & 1/2 months since the diagnosis. It is absolutely amazing to me that that much time has gone by. I'm not sure we're having fun, but it's flying. The school year was just winding down when she first went into the hospital.
Harper continues her chemo. This round (and the next) are weekly treatments. Fortunately, the first week is the only inpatient stay, with week 2 & 3 (of a 3-week round) just an outpatient visit to the clinic, where they push in the vincristine (which is pretty much like her daily flushes). We'll be back inpatient the week after next.
It's a little tough knowing Harper will basically start falling behind tomorrow. She won't be getting the same instruction as all her classmates. I mean, I'm sure she'll be able to catch up later, but she's never shown as much enthusiasm for learning and school as Cadence, and I worry for her. I worry that staying home she won't learn as quickly.
I'm afraid there'll be too many distractions. I'm afraid it will be too easy for her to put off her work, or find something else to do. I know Melissa will be on her - with the TV and Harper's iPad off limits until she does her school work, but there will be bad days. There will be days, probably following chemo, or for a pretty long stretch after surgery, where we'll lay off her, and she'll slip farther and farther behind.
But then I think about what she is learning. I think about the skills, strengths and attitude that her other classmates aren't learning. I don't wish those lessons on them - but I can't help but ponder the advantages that she may have because of her experience.
She knows what it is to fear for her life, and rise above it, learning to enjoy it, despite the fear. She knows what it's like to submit to something that she knows will be unpleasant - that will hurt, and still do it willingly, because the benefit outweighs the pain. She knows that there are some things that, while we hate them, are worth doing because of the greater end goal - even if that end goal is not certain.
She knows things now that any parent would wish to prevent their child from ever knowing, and yet... And yet she is stronger for it. I've seen in her the growth of emotional strength beyond that which many adults could muster. Not constant, mind you, but there, and growing.
I've seen determination, and even confidence when faced with standing out in a crowd, because of her bald head - and yet she knows she is pretty - on the outside and especially on the inside. And she knows it not because we told her. She knows it because she told herself. I see it.
When this is over, and if she wins... No. No, I keep saying that wrong. I keep showing a weakness she herself doesn't show.
When this is over, and she wins - when she beats this terrible disease - when she beats the odds, she will go on in life a wiser, stronger, more intelligent and cunning young lady than any of her peers. Her prospects will be better than any of her friends, because she will have the skills, strengths, and learned lessons few others will be able to boast - and they will help her on her journey to something great.
I don't know what that great something will be. But I know she will be it. I know she will.
And a few days of 3rd grade missed will be nothing.
Back to school for most - but for Harper, she never really left it - she just moved up to an advanced class on life. And I see an amazing graduation in her future.
Subscribe to:
Posts (Atom)