This morning we came into the OMO to have Harper's temporary pheresis catheter taken out of her neck. Turns out the harvest yesterday got 20 times what we needed. Yep - she's a literal stem cell factory!
While waiting for someone from pediatric surgery to become available to do the line removal, Dr Cheerva (our oncologist) came in to talk to us.
The oncology group has a "tumor board" which meets regularly and uses a group discussion format to discuss the status and best care approach for solid tumor patients. They spent a significant amount of time discussing Harper yesterday.
The readout from her most recent scan is that her pulmonary lesions (lungs) have shrunken dramatically. Before they were apparently so diffuse they were hard to count. Now they can be counted (though she didn't tell us the count) and they appear to be going away. Her main tumor on her kidney is also shrinking. They can apparently see a more "normal" kidney shape now.
The one thing that struck me, though, is that her liver tumors have actually gotten bigger. On the surface - That's scary, as it could mean the chemo has NOT been working there. But, she indicated that the tumors are less heterogenous - meaning that they don't look the same all the way through. They actually look more like cysts now, with fluid in the middle. The thought (that we're going with) is that the tutors are actually dying, and that the fluid in the middle is a sign of necrosis. So, they are not shrinking in sequence with the others, but they were bigger, and this could be normal tumor death.
So, with the liver tumors not shrunken, the surgeons think the surgery to remove her kidney could be difficult, and they want to wait. So, we're going to do 2 more rounds of chemo and then re-assess before we do the surgery.
So, some good news (the chemo is definitely working on the lung and kidneys) and some mixed news (the chemo is probably working on the liver).
Next week we'll be back in for another round of chemo. Then, the subsequent drop in counts, Neupogen shots and blood. But, looks like we won't have an inpatient stay for a month and a half (if we can continue to stave off any infection).
We're making some progress. Praying for more.
Wednesday, June 26, 2013
Tuesday, June 25, 2013
Thank You, Pat Metheny
The stem cell harvest we hope is never needed is underway. Harper is resting relatively comfortably, considering she has a stiff straw sticking out of her neck, listening to music on Melissa's phone.
The machine is whirring in the corner. We explained it like a big paint shaker (it has a centrifuge inside it) and she was okay with it. There are lines of blood and fluid everywhere. It looks pretty medieval if you think about it.
We're about 2 hours in. She can stay on the machine no longer than 6 hours at a time. So, whatever they can harvest in 6 hours is all we can get today.
After the harvest is done, she'll get platelets. Her platelets, even after getting some yesterday prior to the insertion surgery, are still low. Plus, the platelets and stem cells are about the same density, so they sit within the same "layer" in the centrifuge. Ends up they get pulled off with the stem cells. So, part way through the harvest they will start platelets to replace them.
The nurse we have today is one of only a few that can do the harvest, and she's been doing harvests for more than 20 years. She's very capable, and has a nursing student observing with her today. Only downside is she's pretty comfortable talking about all the kids that have died (and the fact that when she started 30 years ago in pediatric oncology - they all died). A little unsettling for us, of course, but we know the odds.
She can't get up and do anything while on the machine - she has to lay pretty still. She can't even get up to go to the bathroom. So far she hasn't needed to - hoping she can hold it until we're done, to avoid a bedpan.
If all goes well, and we get the "results" of the collection in time, and they have enough today, we'll stay to have the catheter removed. The way it's been described, they'll un-suture it (its sutured into her skin in several places) and they'll pull it right out at the bedside here in the OMO. The surgeon talked about someone needing to hold pressure on the site for 15 minutes after, to help ensure the vein clots. He said he's never had to go in and suture the vein. That statement was partly comforting, and party concerning - because it means it does happen... And her platelets are so low (even after getting some) I worry. But we'll see.
We're preparing too to go home with the catheter and come back tomorrow. It's possible they won't get enough, and we'll have to do another round. Or, we might not get the count back in time, and even if they have enough, might need to come back to get the catheter out.
If we have enough, we can stop the Nuepogen shots for now. I not, then likely she'll need another shot at home.
But, for now, she just sits and lets the machine suck blood out and then put it back. All the while, listening to Pat Metheny. How many kids her age listen to Pat Metheny? Probably not as many as should.
The machine is whirring in the corner. We explained it like a big paint shaker (it has a centrifuge inside it) and she was okay with it. There are lines of blood and fluid everywhere. It looks pretty medieval if you think about it.
We're about 2 hours in. She can stay on the machine no longer than 6 hours at a time. So, whatever they can harvest in 6 hours is all we can get today.
After the harvest is done, she'll get platelets. Her platelets, even after getting some yesterday prior to the insertion surgery, are still low. Plus, the platelets and stem cells are about the same density, so they sit within the same "layer" in the centrifuge. Ends up they get pulled off with the stem cells. So, part way through the harvest they will start platelets to replace them.
The nurse we have today is one of only a few that can do the harvest, and she's been doing harvests for more than 20 years. She's very capable, and has a nursing student observing with her today. Only downside is she's pretty comfortable talking about all the kids that have died (and the fact that when she started 30 years ago in pediatric oncology - they all died). A little unsettling for us, of course, but we know the odds.
She can't get up and do anything while on the machine - she has to lay pretty still. She can't even get up to go to the bathroom. So far she hasn't needed to - hoping she can hold it until we're done, to avoid a bedpan.
If all goes well, and we get the "results" of the collection in time, and they have enough today, we'll stay to have the catheter removed. The way it's been described, they'll un-suture it (its sutured into her skin in several places) and they'll pull it right out at the bedside here in the OMO. The surgeon talked about someone needing to hold pressure on the site for 15 minutes after, to help ensure the vein clots. He said he's never had to go in and suture the vein. That statement was partly comforting, and party concerning - because it means it does happen... And her platelets are so low (even after getting some) I worry. But we'll see.
We're preparing too to go home with the catheter and come back tomorrow. It's possible they won't get enough, and we'll have to do another round. Or, we might not get the count back in time, and even if they have enough, might need to come back to get the catheter out.
If we have enough, we can stop the Nuepogen shots for now. I not, then likely she'll need another shot at home.
But, for now, she just sits and lets the machine suck blood out and then put it back. All the while, listening to Pat Metheny. How many kids her age listen to Pat Metheny? Probably not as many as should.
Monday, June 24, 2013
Here's To A Harvest We Hope Goes To Waste
Much of the past week has been dedicated to prep for an event we hope is all for naught. A stem cell harvest.
Most people are at least familiar with the idea of a bone marrow transplant. Well, a stem cell transplant is something similar, and is a follow-up to the decimation of the blood cell producing bone marrow after high and extended doses of chemo therapeutics.
The actual "harvest" is done through a pheresis procedure, where blood is removed from the body, put through a centrifuge, the stem cells removed and the remaining blood reintroduced into the body. We've not been through this yet (obviously) but it sounds a lot like dialysis to me.
Once harvested, the stem cells are frozen and stored, for future use.
In order to get enough stem cells to do a transplant, we have to artificially increase the body's production of these cells through the use of a stimulating growth product called Neupogen. Neupogen is given as a subcutaneous injection and is basically the absolute worst part (in Harper's opinion) of the entire therapy.
We've given her a dose of 5mg/kg for the past 5 days and will give her another dose tonight. With so much stimulation, the excess stem cells basically overflow into the bloodstream, where they will be picked up by the harvest.
Another fun part of this little exercise is the insertion of the additional large catheter through which the blood will flow for this harvest. Her broviac central line is apparently not big enough, so today, under general anesthesia at Kosair, they inserted a temporary catheter in her neck. Not a pretty sight.
This catheter will stay in until the harvest is complete. Fortunately, the catheter can be removed at "bedside" which means no surgery to remove. Unfortunately that means she will be awake. Not really looking forward to that...
She was a real trooper, though, for the insertion. So, perhaps we'll be surprised. At least now she seems a little more used to the sight of blood than she was when we started, but I'm guessing the idea of them working on her NECK while awake, and the fear of associated pain, will make for an interesting removal.
All of this for something we HOPE we don't need. See, the stem cell transplant is not in her current treatment plan. But, if she doesn't respond to the standard chemo (all signs so far are that she is) or she has a relapse (after treatment is complete and she's listed as No Evidence of Disease (NED - which will be a VERY good day, indeed)) then they can escalate the treatment to the high dose chemo with stem cell rescue.
And we hope we never get there. We hope the current chemo, with surgical removal of her kidney, and potentially some radiation, will do it, and she'll be clear. We hope the stem cells sit in the Kosair freezer and are someday discarded.
We're going to bring in the crops tomorrow, but we hope this harvest goes completely to waste.
Most people are at least familiar with the idea of a bone marrow transplant. Well, a stem cell transplant is something similar, and is a follow-up to the decimation of the blood cell producing bone marrow after high and extended doses of chemo therapeutics.
The actual "harvest" is done through a pheresis procedure, where blood is removed from the body, put through a centrifuge, the stem cells removed and the remaining blood reintroduced into the body. We've not been through this yet (obviously) but it sounds a lot like dialysis to me.
Once harvested, the stem cells are frozen and stored, for future use.
In order to get enough stem cells to do a transplant, we have to artificially increase the body's production of these cells through the use of a stimulating growth product called Neupogen. Neupogen is given as a subcutaneous injection and is basically the absolute worst part (in Harper's opinion) of the entire therapy.
We've given her a dose of 5mg/kg for the past 5 days and will give her another dose tonight. With so much stimulation, the excess stem cells basically overflow into the bloodstream, where they will be picked up by the harvest.
Another fun part of this little exercise is the insertion of the additional large catheter through which the blood will flow for this harvest. Her broviac central line is apparently not big enough, so today, under general anesthesia at Kosair, they inserted a temporary catheter in her neck. Not a pretty sight.
This catheter will stay in until the harvest is complete. Fortunately, the catheter can be removed at "bedside" which means no surgery to remove. Unfortunately that means she will be awake. Not really looking forward to that...
She was a real trooper, though, for the insertion. So, perhaps we'll be surprised. At least now she seems a little more used to the sight of blood than she was when we started, but I'm guessing the idea of them working on her NECK while awake, and the fear of associated pain, will make for an interesting removal.
All of this for something we HOPE we don't need. See, the stem cell transplant is not in her current treatment plan. But, if she doesn't respond to the standard chemo (all signs so far are that she is) or she has a relapse (after treatment is complete and she's listed as No Evidence of Disease (NED - which will be a VERY good day, indeed)) then they can escalate the treatment to the high dose chemo with stem cell rescue.
And we hope we never get there. We hope the current chemo, with surgical removal of her kidney, and potentially some radiation, will do it, and she'll be clear. We hope the stem cells sit in the Kosair freezer and are someday discarded.
We're going to bring in the crops tomorrow, but we hope this harvest goes completely to waste.
Thursday, June 20, 2013
It's hard
I haven't posted in some time. Partly because its been busier since we've been home, going back and forth. But, mostly because I've been tired, and finding it harder to put the words down. In any event, I suppose I should bring you up to speed.
Last time I posted, we were in the middle of chemo round 2. That chemo round is finished, with few to any real side effects. Amazingly, she seems symptomatically unphased by the chemo, excepting for her fatigue. I find it incredible that she's able to handle them pumping her full of what amounts to medicinal poison.
Since then she's been outwardly on a very slow upswing. Oh sure, there are up days and down days, but overall, she's been doing a little better. After recovering from the chemo, her energy has improved.
Tuesday she went out to the barn with her sisters. Don't tell the doctors, but she did get on a pony and was led around. She's still not really strong enough (we think) for her to control it on her own, but she was able to do something that she thought she couldn't. Wed afternoon, after putting her central line under an aqua guard and wrapping her in kitchen plastic wrap, she even waded in a neighbor's pool for a few minutes. We called it swimming.
Wednesday wmorning e were back to hospital, for a CT scan. We also found out her neutrophil count was zero and she needed blood. So. After spending all day at the hospital and clinic for blood and a CT scan, we had to go home and spend a few hours convincing Harper to let us give her a dose of Neupogen.
Monday we're planning to start her Stem Cell Harvest, so we actually are giving her a Neupogen shot each day. It's joyous (said in a sarcastic tone). On top of that, she will go in for surgery Monday AM to insert an additional large IV catheter for the harvest. They will use it and her central line to take blood out, filter out and collect the stem cells, and then put the blood back. We'll do that daily until they get enough to freeze. In the end, they want at least enought to do 3 transplants. We're hoping they get it all on Monday, but we're not holding our breath.
As before, she really doesn't like the shots. They scare her, and I know they hurt. I completely understand why she fights us. But she also knows why we're doing it. If only that made it easier.
So, we'll continue. Tomorrow she'll get a breathing treatment as a preventative measure against pneumonia. Sunday a nurse will come out to check her levels. Monday we'll start the harvest. Thursday we'll talk with the doctors about the results of the scan.
Another round of chemo and surgery are somewhere in the immediate future too.
Day by day we're getting there. Day by day, she is fighting.
It's hard.
Tuesday, June 11, 2013
Priorities
We have spent a lot of the last week in and out of 2 places. Kosair and the riding barn.
Last Thursday, we had anticipated outpatient chemo to begin. What happened instead was a "23-hour" admit for an unexpected rash and a nasty case of thrush. Thankfully, the rash is all but healed (and her file now reflects a sulfa allergy) and the thrush is gone. Good thing too - I can really only imagine how nasty that made her mouth feel...
We could have gone ahead with the chemo over the weekend, but considering Friday was her 8th birthday (and the pony surprise in store) we opted for a "hospital-free" weekend and chemo starting the following Monday.
While delaying chemo may sound bad at first blush, allowing her system to heal from the thrush infection and systemic reaction to the sulfa before hitting her with major chemo drugs makes some sense. On top of that, we started Megace (aka - Wonderdrug).
Megace is magic. We've gone from zero appetite to a reasonable appetite since we started it last Thursday. She was literally fighting us to take 3 bites an hour before - now she's asking for food and snacks. She gained 0.3 kg between Thursday and Monday. That might not seem like a ton, but considering she last 3 kg (at least) after leaving the hospital the first time, the weight GAIN is a miracle. We're hoping it continues.
The second place we've been a lot since late last week has been the riding barn. Thursday night was, of course, the big introduction of Harper (and her sisters) to the pony. At first she was named Hope. Then Princess Hope. And now (and I think this one will stick) Daisy. Regardless of her name, this little pony has really grabbed us (including me).
We've been out daily (except Monday) since she arrived. I've made 2 trips to Tractor Supply and 1 to Rural King, And each time I come home with some sort of treat for her.
We had 2 groups of family come down over the weekend, and both groups made the trek out to meet Daisy.
Our desire, of course, is that Harper see Daisy as a motivator - an inspiration to get better and stronger. Its been slow, and at times a struggle, but I think we're getting there.
Her big issue, I think, is she's convinced herself she's not strong enough to do anything with Daisy. To a certain extent, she IS frail and weak, and so, there ARE limited things she can do with Daisy. She focuses instead on what she can't do, then gets upset and wants to go home.
But, she's getting there. Today, at her chemo session, she asked us if we think she's strong enough to ride. Had to answer "no" of course, but we tried to tell her she would be strong enough soon, if she keeps eating. Despite having to give her a no to riding, it shows us where her head is - what she's thinking about, and that's riding - a good thing.
I've also attempted, this week, to both be there for her at her chemo AND get into the office. Its worked relatively badly, and I've felt like I'm doing both poorly.
I struggle, because I have a team at work who need me, and honestly, I need them. To a certain extent, work is a necessary distraction from the reality of home - and I need that at some points. But Harper, Melissa, Cadence and Finley need me too. And while I'm the "bread winner" and you have to work to eat (unless you're independently wealthy), I have realized that trying to do BOTH, especially while we're getting the chemo on a daily basis, just isn't working.
So, I'm going to forgo work for a few days, and focus on getting Harper (and the rest of the family) through chemo this week. Next week will bring another set of challenges, I'm sure, but this week I'm focusing on this week.
In the end, lots,of things, personal, work, family, etc - all vie for your attention. The challenge is determining your priorities. I've been reminded of mine.
Last Thursday, we had anticipated outpatient chemo to begin. What happened instead was a "23-hour" admit for an unexpected rash and a nasty case of thrush. Thankfully, the rash is all but healed (and her file now reflects a sulfa allergy) and the thrush is gone. Good thing too - I can really only imagine how nasty that made her mouth feel...
We could have gone ahead with the chemo over the weekend, but considering Friday was her 8th birthday (and the pony surprise in store) we opted for a "hospital-free" weekend and chemo starting the following Monday.
While delaying chemo may sound bad at first blush, allowing her system to heal from the thrush infection and systemic reaction to the sulfa before hitting her with major chemo drugs makes some sense. On top of that, we started Megace (aka - Wonderdrug).
Megace is magic. We've gone from zero appetite to a reasonable appetite since we started it last Thursday. She was literally fighting us to take 3 bites an hour before - now she's asking for food and snacks. She gained 0.3 kg between Thursday and Monday. That might not seem like a ton, but considering she last 3 kg (at least) after leaving the hospital the first time, the weight GAIN is a miracle. We're hoping it continues.
The second place we've been a lot since late last week has been the riding barn. Thursday night was, of course, the big introduction of Harper (and her sisters) to the pony. At first she was named Hope. Then Princess Hope. And now (and I think this one will stick) Daisy. Regardless of her name, this little pony has really grabbed us (including me).
We've been out daily (except Monday) since she arrived. I've made 2 trips to Tractor Supply and 1 to Rural King, And each time I come home with some sort of treat for her.
We had 2 groups of family come down over the weekend, and both groups made the trek out to meet Daisy.
Our desire, of course, is that Harper see Daisy as a motivator - an inspiration to get better and stronger. Its been slow, and at times a struggle, but I think we're getting there.
Her big issue, I think, is she's convinced herself she's not strong enough to do anything with Daisy. To a certain extent, she IS frail and weak, and so, there ARE limited things she can do with Daisy. She focuses instead on what she can't do, then gets upset and wants to go home.
But, she's getting there. Today, at her chemo session, she asked us if we think she's strong enough to ride. Had to answer "no" of course, but we tried to tell her she would be strong enough soon, if she keeps eating. Despite having to give her a no to riding, it shows us where her head is - what she's thinking about, and that's riding - a good thing.
I've also attempted, this week, to both be there for her at her chemo AND get into the office. Its worked relatively badly, and I've felt like I'm doing both poorly.
I struggle, because I have a team at work who need me, and honestly, I need them. To a certain extent, work is a necessary distraction from the reality of home - and I need that at some points. But Harper, Melissa, Cadence and Finley need me too. And while I'm the "bread winner" and you have to work to eat (unless you're independently wealthy), I have realized that trying to do BOTH, especially while we're getting the chemo on a daily basis, just isn't working.
So, I'm going to forgo work for a few days, and focus on getting Harper (and the rest of the family) through chemo this week. Next week will bring another set of challenges, I'm sure, but this week I'm focusing on this week.
In the end, lots,of things, personal, work, family, etc - all vie for your attention. The challenge is determining your priorities. I've been reminded of mine.
Friday, June 7, 2013
Give Us Hope
Getting admitted instead of receiving outpatient chemo as planned was a pretty big let-down yesterday. Then there was the GFR "discussion." Today HAD to be better, right?
Fortunately, it was. A long day, but turned out to be a good one. I'm hoping one that starts a string of better and better days. Sure, there will be down days, but we could use some upward momentum.
Today is Harper's birthday. This special little girls has been with us for 8 years as of today. It has gone by SO FAST.
We'd been asking Harper for days what she wanted for her birthday. She's received so may gifts since her diagnosis, honestly there was little left to get her. She kept shrugging her shoulders. She didn't have any idea.
The morning started, and we asked her again. More shrugs. But we had something up our sleeves. Her trainer had called the day before, and something had come up that would turn out to make for one hell of a birthday for Harper.
Now, we didn't really know, when the day began, when/if we would get to go home. Her rash was improving. Her thrush was clearing. But, it was hard to say what the doctors would want to do.
Early on, we let them know it was her birthday. I think, in the end, that helped them make their decision. They contemplated just starting us on the second round of chemo (4 days long) inpatient and keeping us over the weekend. But when the doctor came in to see us around 9:30, he suggested we go home, enjoy her birthday, and then come back and start the chemo outpatient at the clinic on Monday. We agreed, and we began to plan to head home.
Before we could go, the majority of the staff that has cared for Harper at Kosairs showed up in the room. They had the music therapist there with his guitar, some gifts and a cake. They sang Happy Birthday to Harper, watched her open her gifts, and enjoyed some of the few precious smiles Harper has blessed us with in the past month. They were so sweet.
We made it home, and Harper was suddenly upset. We had to dig, but she finally let it out that she had expected a surprise birthday party when she arrived home... Ugh. I hadn't even thought about it. We didn't know when we would be home - hadn't even really tried to do anything like that. Whoops.
We promised, her, though, that there would be something better.
As the afternoon progressed, we got word that our "surprise" was shaping up nicely. We needed to be there about 8.
I made an errand run, to pick up a few last minute ancillary items, and after dinner, we packed everyone in the car for a ride.
Now, if we'd taken the normal route, we would have given away the surprise. Or, at least they would have figured out where we were going, if not the surprise itself.
So, we took an alternate route. Took longer, but the girls didn't realize we were going to their riding lesson barn until the last minute.
We walked in. The girls were forced to turn around, and then, at the right moment, given permission to look.
This is what they saw:
Everyone, please meet Princess Hope. She is a 1 year old pony, and she now belongs to Harper.
Harper started to cry once she saw Hope, but quickly got that under control and wanted to love on her.
Princess Hope did excellently, and makes me think she's going to be an awesome pony. She is so young, but she was still and calm, even with 3 excited little girls walking around her, touching her and even (Finley) walking under her.
They had at first just called her "Hope" but told Harper she could call her anything she wanted. She wanted to make it Princess Hope. So, Princess Hope it is.
All 3 girls were so excited. Unfortunately, it will be a little while before they can ride her. She's so young, and she hasn't been trained. But, Carly will be working on that, and I have feeling it won't be too long.
They fed her some treats (one of the things I picked up on my errand), brushed her, and changed out her lead rope to a pink one (another item from my errand).
Then Harper got tired, and headed for the car.
A BIG thank you to Carly and Sandy Dolan for making this happen. They found the person who literally gave us the pony, and will be keeping, caring for and training the pony while Harper builds her strength to get back riding.
As I've said multiple times, our biggest concern has really been Harper's own drive and fight. She's feisty, and always has been, but she's lost some of her spunk as this journey has started.
We're praying THIS will spark a flame and ignite her fire. Horses are her love. They are her passion. Now she has her very own.
(Princess) Give Us Hope.
Fortunately, it was. A long day, but turned out to be a good one. I'm hoping one that starts a string of better and better days. Sure, there will be down days, but we could use some upward momentum.
Today is Harper's birthday. This special little girls has been with us for 8 years as of today. It has gone by SO FAST.
We'd been asking Harper for days what she wanted for her birthday. She's received so may gifts since her diagnosis, honestly there was little left to get her. She kept shrugging her shoulders. She didn't have any idea.
The morning started, and we asked her again. More shrugs. But we had something up our sleeves. Her trainer had called the day before, and something had come up that would turn out to make for one hell of a birthday for Harper.
Now, we didn't really know, when the day began, when/if we would get to go home. Her rash was improving. Her thrush was clearing. But, it was hard to say what the doctors would want to do.
Early on, we let them know it was her birthday. I think, in the end, that helped them make their decision. They contemplated just starting us on the second round of chemo (4 days long) inpatient and keeping us over the weekend. But when the doctor came in to see us around 9:30, he suggested we go home, enjoy her birthday, and then come back and start the chemo outpatient at the clinic on Monday. We agreed, and we began to plan to head home.
Before we could go, the majority of the staff that has cared for Harper at Kosairs showed up in the room. They had the music therapist there with his guitar, some gifts and a cake. They sang Happy Birthday to Harper, watched her open her gifts, and enjoyed some of the few precious smiles Harper has blessed us with in the past month. They were so sweet.
We made it home, and Harper was suddenly upset. We had to dig, but she finally let it out that she had expected a surprise birthday party when she arrived home... Ugh. I hadn't even thought about it. We didn't know when we would be home - hadn't even really tried to do anything like that. Whoops.
We promised, her, though, that there would be something better.
As the afternoon progressed, we got word that our "surprise" was shaping up nicely. We needed to be there about 8.
I made an errand run, to pick up a few last minute ancillary items, and after dinner, we packed everyone in the car for a ride.
Now, if we'd taken the normal route, we would have given away the surprise. Or, at least they would have figured out where we were going, if not the surprise itself.
So, we took an alternate route. Took longer, but the girls didn't realize we were going to their riding lesson barn until the last minute.
We walked in. The girls were forced to turn around, and then, at the right moment, given permission to look.
This is what they saw:
Everyone, please meet Princess Hope. She is a 1 year old pony, and she now belongs to Harper.
Harper started to cry once she saw Hope, but quickly got that under control and wanted to love on her.
Princess Hope did excellently, and makes me think she's going to be an awesome pony. She is so young, but she was still and calm, even with 3 excited little girls walking around her, touching her and even (Finley) walking under her.
They had at first just called her "Hope" but told Harper she could call her anything she wanted. She wanted to make it Princess Hope. So, Princess Hope it is.
All 3 girls were so excited. Unfortunately, it will be a little while before they can ride her. She's so young, and she hasn't been trained. But, Carly will be working on that, and I have feeling it won't be too long.
They fed her some treats (one of the things I picked up on my errand), brushed her, and changed out her lead rope to a pink one (another item from my errand).
Then Harper got tired, and headed for the car.
A BIG thank you to Carly and Sandy Dolan for making this happen. They found the person who literally gave us the pony, and will be keeping, caring for and training the pony while Harper builds her strength to get back riding.
As I've said multiple times, our biggest concern has really been Harper's own drive and fight. She's feisty, and always has been, but she's lost some of her spunk as this journey has started.
We're praying THIS will spark a flame and ignite her fire. Horses are her love. They are her passion. Now she has her very own.
(Princess) Give Us Hope.
Thursday, June 6, 2013
Refusing Care
There was a time where I thought people who refused medical care were crazy. Well, maybe not completely crazy, but I thought it was rare. But, the more I am exposed to hospital care on the patient side, the more I understand...
I just basically told a nurse I am refusing a test for Harper. I've threatened to refuse treatment before, when the nursing staff was waking Harper up at all hours of the night, but what they were doing, though timed poorly and without regard to the patient experience, was at least explainable.
This time, the nurse stopped me as I walked to the nutrition room to tell me the nurse practitioner ordered a GFR test, and they were going to do it tomorrow morning. At first it didn't strike me, but as I thought about it, it didn't make sense.
Earlier in the day, before the rash, they were perfectly willing/able to give her her chemo without having an updated GFR (she had one the last time we were in). Now, for some reason, she needs this test? Sorry, not buying that one at face value. If it was needed before the next dose of chemo, as it was attempted to be explained to me, then why could we do it outpatient without the test?
I also have a general problem with tests/procedures/etc being ordered without consulting us. If there is something that needs done, then there should be a way to explain it. I will likely understand whatever it is. And honestly, before I am or my insurance is going to pay for something, I want to understand why we're doing it. I don't care what the "routine" is.
If you're caring for us, don't go ordering tests, medications or anything without giving us a heads-up, or I could go tell you to stuff it. Or scan you're own whatever. If you think we need something, lets have a conversation.
Otherwise, when transport comes to pick her up, we'll be refusing care.
I just basically told a nurse I am refusing a test for Harper. I've threatened to refuse treatment before, when the nursing staff was waking Harper up at all hours of the night, but what they were doing, though timed poorly and without regard to the patient experience, was at least explainable.
This time, the nurse stopped me as I walked to the nutrition room to tell me the nurse practitioner ordered a GFR test, and they were going to do it tomorrow morning. At first it didn't strike me, but as I thought about it, it didn't make sense.
Earlier in the day, before the rash, they were perfectly willing/able to give her her chemo without having an updated GFR (she had one the last time we were in). Now, for some reason, she needs this test? Sorry, not buying that one at face value. If it was needed before the next dose of chemo, as it was attempted to be explained to me, then why could we do it outpatient without the test?
I also have a general problem with tests/procedures/etc being ordered without consulting us. If there is something that needs done, then there should be a way to explain it. I will likely understand whatever it is. And honestly, before I am or my insurance is going to pay for something, I want to understand why we're doing it. I don't care what the "routine" is.
If you're caring for us, don't go ordering tests, medications or anything without giving us a heads-up, or I could go tell you to stuff it. Or scan you're own whatever. If you think we need something, lets have a conversation.
Otherwise, when transport comes to pick her up, we'll be refusing care.
Bactrim, Yeast and a Rash, Oh My
Chemo round #2 is officially on temporary hold. We got up, went to the clinic and were all set and ready to spend the day in the clinic or the OMO to get fluids and the next cocktail of chemo. Close, but no cigar.
Turns out we have thrush and a rash.
Thrush is an overgrowth of a yeast microbe, candida, in the mouth. Her tongue is white. Its actually pretty gross.
Thrush is not a surprise in a patient receiving chemo. At one point her neutrophils were at 0, and she was taking oral antibiotics. A recipe for thrush, really. Unchecked by other normal flora (killed off by the antibiotics) and her normal immune response (white cells) you probably could predict it.
So, thrush is really no big deal. Not sure if they would have given the chemo with the thrush, but its possible they would have. The worrisome thing is the rash.
She has a rash that started yesterday on her legs, then spread to her arms and finally, today, her face and chest. The big concern of the doctor and nurse practitioner in the clinic was the possibility that the thrush was spreading via her bloodstream, causing the rash.
So, what to do? Oh, wait - there's a children's hospital right across the street! Yep - we were admitted.
So far, things have gone ok. At first she was in "isolation" - not knowing what is causing the rash, the nurses were wearing gowns, gloves and masks anytime they touched or interacted with her.
So, what's causing the rash? Could be several things. Could be a systemic infection. Could be a contact dermatitis. Could be a reaction to a medication. Just not sure yet.
But, since she's not running a fever, we believe they've ruled out the systemic infection. That's a great thing. That would have meant a prolonged admission.
Best guess right now is that it is a reaction to the Bactrim she's been on. They've given it to her three days a week (Monday, Tuesday and Wednesday) to help prevent pneumocystis infection in the lungs. She's had so few antibiotics in her life (so healthy before all this) it's certainly possible she had a delayed reaction to the sulfa in the Bactrim. That will make 2 allergies on her profile now. She had a rash after morphine as well.
If things go well (though our history doesn't give me a lot of confidence they will) we may be able to go home late today or tomorrow. At least that's what we've been led to believe is possible. That would be nice, since tomorrow is Harper's 8th birthday.
Until we learn more, we sit here. Where is that yellow brick road, Toto? There's no place like home.
Turns out we have thrush and a rash.
Thrush is an overgrowth of a yeast microbe, candida, in the mouth. Her tongue is white. Its actually pretty gross.
Thrush is not a surprise in a patient receiving chemo. At one point her neutrophils were at 0, and she was taking oral antibiotics. A recipe for thrush, really. Unchecked by other normal flora (killed off by the antibiotics) and her normal immune response (white cells) you probably could predict it.
So, thrush is really no big deal. Not sure if they would have given the chemo with the thrush, but its possible they would have. The worrisome thing is the rash.
She has a rash that started yesterday on her legs, then spread to her arms and finally, today, her face and chest. The big concern of the doctor and nurse practitioner in the clinic was the possibility that the thrush was spreading via her bloodstream, causing the rash.
So, what to do? Oh, wait - there's a children's hospital right across the street! Yep - we were admitted.
So far, things have gone ok. At first she was in "isolation" - not knowing what is causing the rash, the nurses were wearing gowns, gloves and masks anytime they touched or interacted with her.
So, what's causing the rash? Could be several things. Could be a systemic infection. Could be a contact dermatitis. Could be a reaction to a medication. Just not sure yet.
But, since she's not running a fever, we believe they've ruled out the systemic infection. That's a great thing. That would have meant a prolonged admission.
Best guess right now is that it is a reaction to the Bactrim she's been on. They've given it to her three days a week (Monday, Tuesday and Wednesday) to help prevent pneumocystis infection in the lungs. She's had so few antibiotics in her life (so healthy before all this) it's certainly possible she had a delayed reaction to the sulfa in the Bactrim. That will make 2 allergies on her profile now. She had a rash after morphine as well.
If things go well (though our history doesn't give me a lot of confidence they will) we may be able to go home late today or tomorrow. At least that's what we've been led to believe is possible. That would be nice, since tomorrow is Harper's 8th birthday.
Until we learn more, we sit here. Where is that yellow brick road, Toto? There's no place like home.
Tuesday, June 4, 2013
How Are You Doing?
The most common question I hear these days is obvious. "How is Harper doing?" It's a tough question to answer. Why? Well, because the honest answer is long and in many ways a little discouraging. "She's getting stronger" is one of my responses. It's true. She is getting stronger. Very little each day, but she's getting there.
I have to remind myself of this fact, though. I have to think back to her time in the hospital the first round. The Harper that sat with eyes closed all day, barely acknowledging the world, using a bed pan because she was too weak, or in too much pain (or both) to get out of bed.
Today, she agreed to visit her riding lesson barn, and see Beauty, the pony she rides.
That's a big difference. And when Melissa sent me that picture while I was at work today, I teared up a bit. She loves that pony.
So, while she's come a long way, she has a long way to go to be herself.
The second most common question I get (also a bit obvious) is "How are you doing?" or the alternative version of "How are you and Melissa doing?" or holding up, or some variant.
Wow, that one is even harder to answer candidly and honestly. I usually say "ok" or "hanging in there" or the occasional "fine."
Truth is, I'm afraid to truly ask myself and honestly answer that question. I really don't know, and I likely won't for awhile. Our worlds revolve around Harper, her care, and her well being. Then come Cadence and Finley. And of course, gotta eat, so gotta work. Somewhere at the back of the pack, through the dust, I can see us.
Should I be "good"? Or even "ok"? My daughter has cancer, with a not so rosy outlook. Sure, there is a high cure rate, but the odds are stacked in favor of the Stage 1 & 2 patients - not the advanced stages. Not the kind Harper has.
My world continues to spin. I focus outside for periods, lucid periods, mind you, when I can function almost imperceptibly different from before. But, inevitably, I'm back in the twister, with "normal" torn apart around me.
Wish it were a dream. It's not. Wish I would wake up. I won't.
Have I given up? No. Am I downtrodden? More than a bit.
So, next time you ask, and I say "getting there" or some other less than honest answer, know that I'm asking myself the same question, and not getting a straight answer either.
How am I doing? Wish I knew.
I have to remind myself of this fact, though. I have to think back to her time in the hospital the first round. The Harper that sat with eyes closed all day, barely acknowledging the world, using a bed pan because she was too weak, or in too much pain (or both) to get out of bed.
Today, she agreed to visit her riding lesson barn, and see Beauty, the pony she rides.
That's a big difference. And when Melissa sent me that picture while I was at work today, I teared up a bit. She loves that pony.
So, while she's come a long way, she has a long way to go to be herself.
The second most common question I get (also a bit obvious) is "How are you doing?" or the alternative version of "How are you and Melissa doing?" or holding up, or some variant.
Wow, that one is even harder to answer candidly and honestly. I usually say "ok" or "hanging in there" or the occasional "fine."
Truth is, I'm afraid to truly ask myself and honestly answer that question. I really don't know, and I likely won't for awhile. Our worlds revolve around Harper, her care, and her well being. Then come Cadence and Finley. And of course, gotta eat, so gotta work. Somewhere at the back of the pack, through the dust, I can see us.
Should I be "good"? Or even "ok"? My daughter has cancer, with a not so rosy outlook. Sure, there is a high cure rate, but the odds are stacked in favor of the Stage 1 & 2 patients - not the advanced stages. Not the kind Harper has.
My world continues to spin. I focus outside for periods, lucid periods, mind you, when I can function almost imperceptibly different from before. But, inevitably, I'm back in the twister, with "normal" torn apart around me.
Wish it were a dream. It's not. Wish I would wake up. I won't.
Have I given up? No. Am I downtrodden? More than a bit.
So, next time you ask, and I say "getting there" or some other less than honest answer, know that I'm asking myself the same question, and not getting a straight answer either.
How am I doing? Wish I knew.
Sunday, June 2, 2013
Who Says Laughter Is The Best Medicine?
Everyone has heard it said - "Laughter is the best medicine." And while it is arguable that it is better than many of our modern medical advances, it certainly doesn't hurt. Laughter raises the spirits, likely as important (if not more) than physiological treatment. If your heart isn't in it, then your battle is that much harder to win.
It's one of the things we worry most about. Under the "coping" cover Harper has put on, is her heart in it? Is she fighting for herself? Hard to tell. Her (mental) cover is pretty thick. It has to be to keep out the stuff that is happening to her.
But today, we saw a few smiles. Sure, they were intermixed with grimaces. And yes, there were more grimaces than smiles. But they were there.
This morning, she asked to go to Panera for breakfast. I would have asked her if Cadence put her up to it (Panera is one of Cadence's favorite places to eat) if she was laughing more and could take a joke. But if she asks for a specific food, and we can accommodate, we're in.
She ate part of a spinach and artichoke soufflé, and shared Melissa's salad. We got a small smile.
From there we were off to our big outing for the day - Churchill Downs. We didn't tell her where we were going, for fear she would fight us. We've asked her a number of times if she wants to go out and visit the horses at the barn where she rides, and she consistently says no. We think she fears it will make her sad since she can't ride right now.
We started in an indoor box that a friend generously gave us tickets for. There were 8 seats, and 3 of us. Lots of room. And Harper had some sweet tea, a few nachos and part of a pretzel while we watched the first 5 races. We're still feeding her every chance we get. She laid her head on Melissa's lap and watched the jumbotron. I, meanwhile, bet and lost money - which is what I always do at the track. I'm supporting the local economy...
We walked down to the paddock at one point and she and a friend of hers who we met there (daughter of the friend who gave us the tickets) watched the horses and jockeys mount up for a race. She seemed to enjoy seeing the horses.
Then, the second surprise. A friend of a nurse at our pediatrician's office got us back-track. We went and saw a few horses on the backside of Churchill.
Harper seemed to really enjoy it (as much as she enjoys anything right now) and actively touched, pet and fed the horses pepper mints. We got some more nice shots.
Who says laughter is the best medicine? Today, the best medicine was horses.
It's one of the things we worry most about. Under the "coping" cover Harper has put on, is her heart in it? Is she fighting for herself? Hard to tell. Her (mental) cover is pretty thick. It has to be to keep out the stuff that is happening to her.
But today, we saw a few smiles. Sure, they were intermixed with grimaces. And yes, there were more grimaces than smiles. But they were there.
This morning, she asked to go to Panera for breakfast. I would have asked her if Cadence put her up to it (Panera is one of Cadence's favorite places to eat) if she was laughing more and could take a joke. But if she asks for a specific food, and we can accommodate, we're in.
She ate part of a spinach and artichoke soufflé, and shared Melissa's salad. We got a small smile.
From there we were off to our big outing for the day - Churchill Downs. We didn't tell her where we were going, for fear she would fight us. We've asked her a number of times if she wants to go out and visit the horses at the barn where she rides, and she consistently says no. We think she fears it will make her sad since she can't ride right now.
We started in an indoor box that a friend generously gave us tickets for. There were 8 seats, and 3 of us. Lots of room. And Harper had some sweet tea, a few nachos and part of a pretzel while we watched the first 5 races. We're still feeding her every chance we get. She laid her head on Melissa's lap and watched the jumbotron. I, meanwhile, bet and lost money - which is what I always do at the track. I'm supporting the local economy...
We walked down to the paddock at one point and she and a friend of hers who we met there (daughter of the friend who gave us the tickets) watched the horses and jockeys mount up for a race. She seemed to enjoy seeing the horses.
Then, the second surprise. A friend of a nurse at our pediatrician's office got us back-track. We went and saw a few horses on the backside of Churchill.
Harper seemed to really enjoy it (as much as she enjoys anything right now) and actively touched, pet and fed the horses pepper mints. We got some more nice shots.
Who says laughter is the best medicine? Today, the best medicine was horses.
Harper, I Will Follow You Anywhere
My previous post was a little more emotional, so I'll focus this one more on providing an update on Harper and how she's doing overall.
In general, we're seeing slow improvement daily. Not everything gets better all at once, but there seems to be a small victory or milestone just about every day.
For example, she is eating. She is even requesting food, at times. We are making daily trips to the grocery (or so it feels) to buy the things she asks for, but that's a small price to pay if she'll eat it. Yesterday is was mini chocolate donuts and ravioli (Chef Boyardee).
Taking medicine has been a battle since the beginning, but we've also made great progress there as well. She is cooperating a lot more, taking the meds when we ask, and not fighting nearly as much. Since the oral antibiotics are not very tasty, I understand why she doesn't like those, so I try to cut her some slack on pushing back on those, but even there she is doing better.
Her activity level is slowly climbing. She gets out and walks the neighborhood just about every day. It's no power walk, to be sure, but she does it. She can make it about halfway around the neighborhood loop before she needs us to get her home. Yesterday a neighbor offered a couch, and then drove her and Melissa back to our house.
A home health nurse came out yesterday to draw blood for another CBC. The doctors want to see if her white counts stay up a few days after a Neupogen dose. Unfortunately, they were down, so we had to give another's dose here at home.
This was the first time we had given the Neupogen at home, and it was a little tough. Of all the things she hates, shots are near the top of the list. But, after we shed some tears, discussed (again) how the medicine could not go in her central line and were reminded, multiple times how much she hates it, she was brave and let me give her the shot.
The show of bravery is so encouraging. There were times in the hospital when she would just melt and withdraw mentally so it seemed she wasn't even there. Now, at home, we're seeing the same anxiety, but times when she can control it and, to a degree, master it. THAT reinforces she's fighting.
And seeing her fight helps energize and inspire me to keep up the fight for her as well. She's the General on this campaign, and we are mere infantry soldiers. She's in command, and honestly we take our orders from her.
Lead away my dear. Take charge. Lead the fight. And Harper, I will follow you anywhere.
In general, we're seeing slow improvement daily. Not everything gets better all at once, but there seems to be a small victory or milestone just about every day.
For example, she is eating. She is even requesting food, at times. We are making daily trips to the grocery (or so it feels) to buy the things she asks for, but that's a small price to pay if she'll eat it. Yesterday is was mini chocolate donuts and ravioli (Chef Boyardee).
Taking medicine has been a battle since the beginning, but we've also made great progress there as well. She is cooperating a lot more, taking the meds when we ask, and not fighting nearly as much. Since the oral antibiotics are not very tasty, I understand why she doesn't like those, so I try to cut her some slack on pushing back on those, but even there she is doing better.
Her activity level is slowly climbing. She gets out and walks the neighborhood just about every day. It's no power walk, to be sure, but she does it. She can make it about halfway around the neighborhood loop before she needs us to get her home. Yesterday a neighbor offered a couch, and then drove her and Melissa back to our house.
A home health nurse came out yesterday to draw blood for another CBC. The doctors want to see if her white counts stay up a few days after a Neupogen dose. Unfortunately, they were down, so we had to give another's dose here at home.
This was the first time we had given the Neupogen at home, and it was a little tough. Of all the things she hates, shots are near the top of the list. But, after we shed some tears, discussed (again) how the medicine could not go in her central line and were reminded, multiple times how much she hates it, she was brave and let me give her the shot.
The show of bravery is so encouraging. There were times in the hospital when she would just melt and withdraw mentally so it seemed she wasn't even there. Now, at home, we're seeing the same anxiety, but times when she can control it and, to a degree, master it. THAT reinforces she's fighting.
And seeing her fight helps energize and inspire me to keep up the fight for her as well. She's the General on this campaign, and we are mere infantry soldiers. She's in command, and honestly we take our orders from her.
Lead away my dear. Take charge. Lead the fight. And Harper, I will follow you anywhere.
Saturday, June 1, 2013
What I Miss Most
It's a dramatic understatement to say our lives have changed in the last 3 weeks. They look very little like they did back as late as May 9th.
So many things have changed, and we have only just begun.
We hardly leave the house.
We surround ourselves with hand sanitizer.
We sent the cat on "vacation" at my mother's house.
We buy any food that Harper even remotely indicates she might eat. Our pantry is about to overflow, as she only eats a bite of each thing.
We have dug out the clothes we had put away because Harper had outgrown them (she's lost enough weight that her newer shorts fall off of her).
We watch a lot more Phineas & Ferb and My Little Pony than before. Entire seasons, over and over again.
We've spent more on medical costs than the previous 4 years combined.
The house lacks laughter. Our house used to be a buzz of activity. Sometimes (more often than not, actually) that activity was demolition - but it was happy demolition. There was joy. There was giggling. There was laughter. That is all but gone, and I really look forward to it coming back.
Laughter. Yes, that's what I miss the most.
So many things have changed, and we have only just begun.
We hardly leave the house.
We surround ourselves with hand sanitizer.
We sent the cat on "vacation" at my mother's house.
We buy any food that Harper even remotely indicates she might eat. Our pantry is about to overflow, as she only eats a bite of each thing.
We have dug out the clothes we had put away because Harper had outgrown them (she's lost enough weight that her newer shorts fall off of her).
We watch a lot more Phineas & Ferb and My Little Pony than before. Entire seasons, over and over again.
We've spent more on medical costs than the previous 4 years combined.
The house lacks laughter. Our house used to be a buzz of activity. Sometimes (more often than not, actually) that activity was demolition - but it was happy demolition. There was joy. There was giggling. There was laughter. That is all but gone, and I really look forward to it coming back.
Laughter. Yes, that's what I miss the most.
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