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.
Thursday, August 29, 2013
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.
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