Friday, May 31, 2013
The Bad Guy
Every story needs a villain. Every hero needs a counterpart. Well, it would seem that, at least for the time being, I have joined the dark side and am now classified as "evil" in Harper's mind.
Thursday we went into the Hemotology/Oncology Clinic (doctor's office) for our first visit. As part of that, she had blood drawn from her line (twice), her BP, height, weight and temp were taken, and she was examined by multiple doctors and residents. No big deal so far.
Her neutrophil counts had been so low (zero) just 2 days before, and we are scheduled to be admitted next week for another round of chemo. But, they won't give the next round of chemo if her neutrophils are low. And they also wont give the chemo if she's recently had the Neupogen. In order to keep on schedule (and prevent infection) they wanted to give her another Neupogen dose.
Well, if you've been reading along, you know Harper's not a fan of needles, so shots are not on her list of things she likes. Normally, this would not have been a bad things for me personally, as the nurses usually give it, and she can get mad at them just fine - and they're used to it.
But, since we will be giving the Neupogen at home, and I'll likely be the one giving it, the nurse suggested I give her the injection. Not hard, really, and I knew she wouldn't like it, but she wasn't going to like it no matter who gave it. I gave injections and drew blood in the Army as a medic, and I gave thousands of flu shots as a pharmacist.
I gave her the shot, no big deal, at first.
But since I gave her the shot, she really wants nothing to do with me. She drew a picture yesterday showing how her mom and her friend were good and nice, but she marked a picture of me "evil" and drew a thumbs down for me, where everyone else got a thumbs up. I'm thrilled she's drawing, and doing something other than watch TV, but evil?
So, apparently, now, with my connection to and willingness to give her shots, I'm now a bad guy. But you know what? I'm really ok with that.
The Neupogen keeps her white counts up. Sure, it costs almost $3,000 a box, but if it keeps her out of the hospital and without infections, I'm all in.
If needed, I'll even be the bad guy.
Tuesday, May 28, 2013
Red, Red Wine (or Blood)
So, I wasn't planning on red wine tonight, but I was thinking about a white. Actually, put one in the fridge. But, once again, things have not gone quite as planned.
We went to Dr Corba's office this morning (our primary care pediatrician) to get a blood draw. The oncology office wants a blood count every so often to monitor her hemoglobin, platelets and neutrophils (white blood cells). This was the first time we'd done one outside of the hospital, and Harper's anxiety was in full force. Anything even remotely medical related right now sets her off. When the nurse practitioner came into the room, she started putting on gloves, and Harper went into a tailspin. We finally got her calmed down and they drew the blood.
Later in the day, as I was getting ready to take Cadence and Finley to riding lessons, the oncology office called and told me that her red blood cell counts were low enough that they wanted her to come in for a transfusion. Ok, girls, change of plans. Grandma will take you to riding - Mom and I need to take Harper for some blood.
And so we sit, fortunately this time in the outpatient observation area (across the street from Kosair in Norton) waiting for the blood cross-match and type (in case her blood type changed... Seems silly to me, but if its safety related, I guess I won't complain too much) and for the delivery of the blood.
Lucky (ha ha) for us, her neutrophils are ZERO so she's going to also get a dose of Nuepogen to stimulate her white blood cell production. It's given subcutaneously, so our assurances to Harper that there shouldn't be any needles involved would appear to be false... Should be a great deal of fun. I am envisioning us sitting on top of her to get that done.
But, back to the blood. I've never been a blood donor. I was always too chicken of the needles. Of course, this experience has put blood donation in a different light for me, seeing that Harper and I are the same blood type and she's going to need a lot of transfusions over the course of her treatment. I'm going to schedule a blood donation myself. We investigated "direct donation" where you earmark your blood for a specific patient (as she and I are the same blood type) but have decided against it since if there is any reason they can't use it for Harper, it can't benefit anyone else.
We've been overwhelmed, at times, with the considerable volume of offers to help us as we have started this journey. People have raised money for her medical bills (which will be substantial by the way), brought us food, etc. Its been humbling. But now, as they are about to give Harper her 3rd transfusion, another bit of help comes to mind. Give blood. Or better yet, give platelets, as they are only good for 5 days.
Help keep Harper stocked up on her red. We can take care of the wine.
We went to Dr Corba's office this morning (our primary care pediatrician) to get a blood draw. The oncology office wants a blood count every so often to monitor her hemoglobin, platelets and neutrophils (white blood cells). This was the first time we'd done one outside of the hospital, and Harper's anxiety was in full force. Anything even remotely medical related right now sets her off. When the nurse practitioner came into the room, she started putting on gloves, and Harper went into a tailspin. We finally got her calmed down and they drew the blood.
Later in the day, as I was getting ready to take Cadence and Finley to riding lessons, the oncology office called and told me that her red blood cell counts were low enough that they wanted her to come in for a transfusion. Ok, girls, change of plans. Grandma will take you to riding - Mom and I need to take Harper for some blood.
And so we sit, fortunately this time in the outpatient observation area (across the street from Kosair in Norton) waiting for the blood cross-match and type (in case her blood type changed... Seems silly to me, but if its safety related, I guess I won't complain too much) and for the delivery of the blood.
Lucky (ha ha) for us, her neutrophils are ZERO so she's going to also get a dose of Nuepogen to stimulate her white blood cell production. It's given subcutaneously, so our assurances to Harper that there shouldn't be any needles involved would appear to be false... Should be a great deal of fun. I am envisioning us sitting on top of her to get that done.
But, back to the blood. I've never been a blood donor. I was always too chicken of the needles. Of course, this experience has put blood donation in a different light for me, seeing that Harper and I are the same blood type and she's going to need a lot of transfusions over the course of her treatment. I'm going to schedule a blood donation myself. We investigated "direct donation" where you earmark your blood for a specific patient (as she and I are the same blood type) but have decided against it since if there is any reason they can't use it for Harper, it can't benefit anyone else.
We've been overwhelmed, at times, with the considerable volume of offers to help us as we have started this journey. People have raised money for her medical bills (which will be substantial by the way), brought us food, etc. Its been humbling. But now, as they are about to give Harper her 3rd transfusion, another bit of help comes to mind. Give blood. Or better yet, give platelets, as they are only good for 5 days.
Help keep Harper stocked up on her red. We can take care of the wine.
Sunday, May 26, 2013
A New Normal
A common phrase I picked up on during our time at the hospital was "her normal." The nurses would say something like, "call when you notice she's not her normal." I wasn't exactly sure what that meant. I mean, I thought I did, but I was a little off.
See, there was the old normal Harper - the one we all knew. Energetic, playful, laughing. But, that normal is apparently buried deep within her right now. A new normal has emerged in its place.
This new normal is moody, sad, constantly in pain from something. The new normal hates noise, doesn't like to eat the things the old normal Harper liked, and sits, zoned out on the couch. The new normal is pessimistic, thinking that things will never get better, and constantly in fear of the next thing we're going to put her through or make her do.
I love Harper, but I don't really care for this new normal. In fact, I keep hoping this ISN'T the new normal, and is instead some sort of interim normal, and something better is just below the surface, waiting for just the right encouragement to come out.
That encouragement is where I'm struggling. Do I coax with kind, soothing words? Or do I challenge her thinking, remind her how strong she is inside and challenge her to break out? Or a combination, depending on the situation?
She does continue to improve. Today she walked down the street twice. She also asked me to take her to Panera (just the two of us) for lunch, which I did. She walked in on her own, and we moved seats 3 times before leaving (at her request because she was cold in every spot). She ate, and on her own.
But at other times, she was the all too recently familiar, anxious child who just wanted to cower when we asked her to take medicine or wanted to run (well, walk right now) away to her room when her sisters were the least bit loud.
A bit hot and cold. I guess right now we're not having good days and bad days. We're having good hours and bad hours. Actually, it changes by the minute.
I'm still hoping our new normal has yet to fully form, and that it is closer to the spunky little girl with fire in her belly that I knew before all this started.
Fight, Harper, fight. We're all here to fight with you. Lets make fighting our new normal.
See, there was the old normal Harper - the one we all knew. Energetic, playful, laughing. But, that normal is apparently buried deep within her right now. A new normal has emerged in its place.
This new normal is moody, sad, constantly in pain from something. The new normal hates noise, doesn't like to eat the things the old normal Harper liked, and sits, zoned out on the couch. The new normal is pessimistic, thinking that things will never get better, and constantly in fear of the next thing we're going to put her through or make her do.
I love Harper, but I don't really care for this new normal. In fact, I keep hoping this ISN'T the new normal, and is instead some sort of interim normal, and something better is just below the surface, waiting for just the right encouragement to come out.
That encouragement is where I'm struggling. Do I coax with kind, soothing words? Or do I challenge her thinking, remind her how strong she is inside and challenge her to break out? Or a combination, depending on the situation?
She does continue to improve. Today she walked down the street twice. She also asked me to take her to Panera (just the two of us) for lunch, which I did. She walked in on her own, and we moved seats 3 times before leaving (at her request because she was cold in every spot). She ate, and on her own.
But at other times, she was the all too recently familiar, anxious child who just wanted to cower when we asked her to take medicine or wanted to run (well, walk right now) away to her room when her sisters were the least bit loud.
A bit hot and cold. I guess right now we're not having good days and bad days. We're having good hours and bad hours. Actually, it changes by the minute.
I'm still hoping our new normal has yet to fully form, and that it is closer to the spunky little girl with fire in her belly that I knew before all this started.
Fight, Harper, fight. We're all here to fight with you. Lets make fighting our new normal.
Small Victories
A war is made up of many battles. Victory at one battle does not mean winning the war, it just means you are one step closer. Likewise, losing a battle doesn't mean utter defeat. It just means the road ahead is a little bit harder. We are home now, and being in our own house is comforting, but the war rages on; the war has just shifted to a different battlefield.
Though we are now home, our daily battles are much the same - just fought from the comfort of our home instead of a hospital room. Eating and medication continue to be the big issues.
As we expected, the chemo appears to be affecting her taste buds. Food tastes different, and it puts her off many of her normally acceptable foods. She doesn't hate the normal foods, they just are not as appealing as they once were. Thankfully, sushi continues to be something she likes so as long as that holds out, I think we'll be eating sushi a lot.
Getting her to take her medicines is also an ongoing battle, with skirmishes several times a day. The most problematic is the antibiotic she's on - Augmentin ES. She hated it in the hospital, so I had it flavored at the pharmacy when we came home. She asked for strawberry. She still hates it. Then there is the issue of how many pills there are. She's only on a few things, but we started out trying to get her take them all at once. She has negotiated to the point that we have agreed to give them to her one at a time if we can.
We're doing some covert ops as well, in our bid to win this war. We're spiking her food and drinks as much as we can. I tried to putting protein powder in her Hawaiian Punch, which failed miserably, but we have been successful in putting Miralax in it. We also have been successful at passing off chocolate Ensure as hot chocolate, which she drinks when she takes her antibiotic liquid. Apparently the chocolate flavor helps deal with the bitterness of the Augmentin. We gave her the chocolate Ensure in the hospital cold, and she disliked it greatly - warm is better, so we've adapted. She has also tried and not hated the Ensure Clear, which is apple juice flavored. So, we push the hot chocolate, Hawaiian Punch and apple juice whenever we can.
A big part of our success at this point will also hinge on her willingness to fight. She is currently still having what I call a pity party for herself. She feels sick, and doesn't want to be the sick kid, so she mopes. On top of that she's so anxious about her central line (which I believe her is uncomfortable, but shouldn't be as painful as she acts) she doesn't want to move.
We need her to fight - and not fight us, but fight the disease, mentally. She is a fighter, but right now she sometimes points her fight at the wrong target. So, I've decided to correct her every time she says she's sick. I do not accept that she's sick. Yes, she has cancer, but unless she has an active infection, I do not classify her as sick (at least when talking to and around her). She can do anything she wants or puts her mind to - and I want to engage her in a conversation about what she can do, not what she can't.
So, the war rages on - in a different locale, but with many of the same forces at work. When she eats, even just a bite, we claim victory. When she swallows a pill, we claim victory. Small or not, it's moving us in the right direction. She's getting stronger, little by little, and we will win this war - one small victory at a time.
Though we are now home, our daily battles are much the same - just fought from the comfort of our home instead of a hospital room. Eating and medication continue to be the big issues.
As we expected, the chemo appears to be affecting her taste buds. Food tastes different, and it puts her off many of her normally acceptable foods. She doesn't hate the normal foods, they just are not as appealing as they once were. Thankfully, sushi continues to be something she likes so as long as that holds out, I think we'll be eating sushi a lot.
Getting her to take her medicines is also an ongoing battle, with skirmishes several times a day. The most problematic is the antibiotic she's on - Augmentin ES. She hated it in the hospital, so I had it flavored at the pharmacy when we came home. She asked for strawberry. She still hates it. Then there is the issue of how many pills there are. She's only on a few things, but we started out trying to get her take them all at once. She has negotiated to the point that we have agreed to give them to her one at a time if we can.
We're doing some covert ops as well, in our bid to win this war. We're spiking her food and drinks as much as we can. I tried to putting protein powder in her Hawaiian Punch, which failed miserably, but we have been successful in putting Miralax in it. We also have been successful at passing off chocolate Ensure as hot chocolate, which she drinks when she takes her antibiotic liquid. Apparently the chocolate flavor helps deal with the bitterness of the Augmentin. We gave her the chocolate Ensure in the hospital cold, and she disliked it greatly - warm is better, so we've adapted. She has also tried and not hated the Ensure Clear, which is apple juice flavored. So, we push the hot chocolate, Hawaiian Punch and apple juice whenever we can.
A big part of our success at this point will also hinge on her willingness to fight. She is currently still having what I call a pity party for herself. She feels sick, and doesn't want to be the sick kid, so she mopes. On top of that she's so anxious about her central line (which I believe her is uncomfortable, but shouldn't be as painful as she acts) she doesn't want to move.
We need her to fight - and not fight us, but fight the disease, mentally. She is a fighter, but right now she sometimes points her fight at the wrong target. So, I've decided to correct her every time she says she's sick. I do not accept that she's sick. Yes, she has cancer, but unless she has an active infection, I do not classify her as sick (at least when talking to and around her). She can do anything she wants or puts her mind to - and I want to engage her in a conversation about what she can do, not what she can't.
So, the war rages on - in a different locale, but with many of the same forces at work. When she eats, even just a bite, we claim victory. When she swallows a pill, we claim victory. Small or not, it's moving us in the right direction. She's getting stronger, little by little, and we will win this war - one small victory at a time.
Thursday, May 23, 2013
Home Sweet, Sweet Home
We finally have her home. It's wonderful. She has slept quite a bit since we've been home, but she's been visibly more comfortable in her own surroundings.
After making it home around 5pm, I ran to get her prescriptions filled and picked up some supplies. Antibiotics mostly, along with gloves, masks, moist wipes, etc.
She's sleeping on the couch right now. So far the effects she had from the last vincristine dose haven't materialized yet. Hoping they don't.
It sure is nice to have her home, sweet, home.
After making it home around 5pm, I ran to get her prescriptions filled and picked up some supplies. Antibiotics mostly, along with gloves, masks, moist wipes, etc.
She's sleeping on the couch right now. So far the effects she had from the last vincristine dose haven't materialized yet. Hoping they don't.
It sure is nice to have her home, sweet, home.
Headed Home
This morning we got the INCREDIBLE news that we get to go home!
Harper has done so well over the past 24 hours. She has eaten so much better - lots of little bites, including:
- sausage
- pancake
- Ensure
- Ice cream
- yogurt
- pickle
- soup
- milk
- Capri sun
- Chik-fil-A chicken strip
- mandarin orange
- apple
- goldfish crackers
- sushi
Her albumin is up again!
Also, she went to the family area at least 3 times yesterday. And, she's getting herself out of bed on her own, and going to the restroom on her own. It's wonderful!!!
She's been a little more anxious this morning, as we've been trying to get her off the Ativan. We did ask about potentially going home with a script, but the doctor wants to see how she does once she's home.
They will give her another dose of vincristine before we go. Which concerns me, because she had a lot of leg pain after the last dose. That could make tonight a little challenging.
Next week she'll need a blood test (to check her blood counts) and another dose of chemo. We'll be backdown to the clinic on Thursday for the chemo. But, if she doesn't develop a fever or have anything strange happen, we should be home for a whole week!!!
It feels so good to be headed home!!!!
Harper has done so well over the past 24 hours. She has eaten so much better - lots of little bites, including:
- sausage
- pancake
- Ensure
- Ice cream
- yogurt
- pickle
- soup
- milk
- Capri sun
- Chik-fil-A chicken strip
- mandarin orange
- apple
- goldfish crackers
- sushi
Her albumin is up again!
Also, she went to the family area at least 3 times yesterday. And, she's getting herself out of bed on her own, and going to the restroom on her own. It's wonderful!!!
She's been a little more anxious this morning, as we've been trying to get her off the Ativan. We did ask about potentially going home with a script, but the doctor wants to see how she does once she's home.
They will give her another dose of vincristine before we go. Which concerns me, because she had a lot of leg pain after the last dose. That could make tonight a little challenging.
Next week she'll need a blood test (to check her blood counts) and another dose of chemo. We'll be backdown to the clinic on Thursday for the chemo. But, if she doesn't develop a fever or have anything strange happen, we should be home for a whole week!!!
It feels so good to be headed home!!!!
Wednesday, May 22, 2013
We're Making Progress & Keeping Expectations in Check
Well, things are looking up. After a full 5 hours of uninterrupted rest last night (sometimes politely complaining works) Harper is looking a little better this morning. Still not 100%, but moving in the right direction.
She ate most of a McDonalds Strawberry & Cream pie and a little pizza last night. We also "persuaded" her to drink the majority of an Ensure shake (mixed with chocolate ice cream) overnight. And this morning? Her albumin levels from her morning blood draw/labs are up. Unfortunately not to normal levels, but better. We're making progress.
They weighed her this morning, and she has lost a little more than a kg since yesterday. That's mostly fluids. She's still a little puffy, around her ankles, but we're down more than 2kg in 2 days. We're making progress.
She also slept all last night with no oxygen level issues without using any supplemental oxygen. Her breathing exercises seem to be helping. We're making progress.
All those are good signs. But, we're still not out of the woods. The doctors could continue to hold her. That's what happened yesterday - we were so looking forward to going home, but all that didn't work out very well...
So, we're making progress, but keeping expectations in check.
She ate most of a McDonalds Strawberry & Cream pie and a little pizza last night. We also "persuaded" her to drink the majority of an Ensure shake (mixed with chocolate ice cream) overnight. And this morning? Her albumin levels from her morning blood draw/labs are up. Unfortunately not to normal levels, but better. We're making progress.
They weighed her this morning, and she has lost a little more than a kg since yesterday. That's mostly fluids. She's still a little puffy, around her ankles, but we're down more than 2kg in 2 days. We're making progress.
She also slept all last night with no oxygen level issues without using any supplemental oxygen. Her breathing exercises seem to be helping. We're making progress.
All those are good signs. But, we're still not out of the woods. The doctors could continue to hold her. That's what happened yesterday - we were so looking forward to going home, but all that didn't work out very well...
So, we're making progress, but keeping expectations in check.
Tuesday, May 21, 2013
Still here
Well, I can tell you where we're not - home. Where, oh where might we be? Oh yeah, room K739. Better than K414 (ICU) but a far cry from our own house and our own beds.
The day started off looking good. Harper was up and alert. She ate a little in the morning, and was asking to make brownies.
I went home and picked up Finley from a friend's house, and she and I hung out for a few hours. It was another nice little break. We played a little, worked on a puzzle, and returned the rented Rug Doctor. Then we headed for the hospital to do brownies.
Harper was napping a little when we arrived, and Grandma showed up just after we did. Harper had been down for another chest X-ray. After a little prodding, she got up, and we walked to the family area. In there they have an oven and some basic cooking utensils.
She tired quickly again, and after baking the brownies we returned to her room. Then came the next challenge - changing the dressing over her central line.
The psychologist visited yesterday and has been concerned about Harper's anxiety. With the change of her dressing coming up the next day, she wanted to do some pre-discussion about the plan. Not surprising, Harper shut down and wasn't interested in discussion it.
Turns out, Harper did awesome. The dressing was a Tegaderm, which means she can see through it and can see all the stitches holding her line in place. Despite this, and after a dose of Ativan (yay Ativan!), she all but removed the thing by herself. I was actually shocked and incredibly pleased. Despite her worry, she did it, and now she knows it's not that bad. That's a good thing, because we're going to need to change it at home later.
Later in the day, the resident came in to see Harper. I cornered her on what is keeping us here. After a half-assed a ill-informed response that I didn't buy, she checked with the attending, she came back with the real reasons:
1) edema - she is still swollen, in her legs and abdomen; they are also still concerned about her lungs - the chest X-ray shows improvement, but there is still fluid there, which is a recipe for pneumonia; they are still giving Lasix about daily as well
2) low albumin - they are giving her albumin because her blood level of albumin is low. This is likely related to her lack of nutrition over the last week. Despite our efforts to push food, she has eaten little, and its been hard to argue with her knowing that she is so uncomfortable in her abdomen.
3) oxygen - she has been using oxygen at night, as her blood oxygen levels have been dropping while she sleeps
If we can correct the above 3 things, we can go home.
After accosting the resident, I then talked to the nurse. I expressed my discontent with the regular and too frequent wake-ups going on at night. Different people coming in at different times, apparently not talking to one another. I threatened to begin refusing treatment if they didn't work on bundling visits. Apparently my message got through, because once the night nurse arrived she came in and walked us through what would happen overnight, and Harper is expected to get 5 hours of uninterrupted rest. Prayers Answered. God really does help those who help themselves (and complain occasionally).
They have also ordered Ensure for her, and we pushed it all evening. We even mixed it with chocolate ice cream to make it colder and taste better.
We're determined to get out of here, and Harper's general approach of delay and avoidance isn't going to do it anymore. We're going to be pushing her now.
Lets get this going. Tomorrow at this time, I want to be almost anywhere but - Still Here.
The day started off looking good. Harper was up and alert. She ate a little in the morning, and was asking to make brownies.
I went home and picked up Finley from a friend's house, and she and I hung out for a few hours. It was another nice little break. We played a little, worked on a puzzle, and returned the rented Rug Doctor. Then we headed for the hospital to do brownies.
Harper was napping a little when we arrived, and Grandma showed up just after we did. Harper had been down for another chest X-ray. After a little prodding, she got up, and we walked to the family area. In there they have an oven and some basic cooking utensils.
She tired quickly again, and after baking the brownies we returned to her room. Then came the next challenge - changing the dressing over her central line.
The psychologist visited yesterday and has been concerned about Harper's anxiety. With the change of her dressing coming up the next day, she wanted to do some pre-discussion about the plan. Not surprising, Harper shut down and wasn't interested in discussion it.
Turns out, Harper did awesome. The dressing was a Tegaderm, which means she can see through it and can see all the stitches holding her line in place. Despite this, and after a dose of Ativan (yay Ativan!), she all but removed the thing by herself. I was actually shocked and incredibly pleased. Despite her worry, she did it, and now she knows it's not that bad. That's a good thing, because we're going to need to change it at home later.
Later in the day, the resident came in to see Harper. I cornered her on what is keeping us here. After a half-assed a ill-informed response that I didn't buy, she checked with the attending, she came back with the real reasons:
1) edema - she is still swollen, in her legs and abdomen; they are also still concerned about her lungs - the chest X-ray shows improvement, but there is still fluid there, which is a recipe for pneumonia; they are still giving Lasix about daily as well
2) low albumin - they are giving her albumin because her blood level of albumin is low. This is likely related to her lack of nutrition over the last week. Despite our efforts to push food, she has eaten little, and its been hard to argue with her knowing that she is so uncomfortable in her abdomen.
3) oxygen - she has been using oxygen at night, as her blood oxygen levels have been dropping while she sleeps
If we can correct the above 3 things, we can go home.
After accosting the resident, I then talked to the nurse. I expressed my discontent with the regular and too frequent wake-ups going on at night. Different people coming in at different times, apparently not talking to one another. I threatened to begin refusing treatment if they didn't work on bundling visits. Apparently my message got through, because once the night nurse arrived she came in and walked us through what would happen overnight, and Harper is expected to get 5 hours of uninterrupted rest. Prayers Answered. God really does help those who help themselves (and complain occasionally).
They have also ordered Ensure for her, and we pushed it all evening. We even mixed it with chocolate ice cream to make it colder and taste better.
We're determined to get out of here, and Harper's general approach of delay and avoidance isn't going to do it anymore. We're going to be pushing her now.
Lets get this going. Tomorrow at this time, I want to be almost anywhere but - Still Here.
Monday, May 20, 2013
Take a Breath
There are (at least) two types of running - Sprints and Distance. The past 11 days have been one of the longest sprints of my life. Tomorrow may begin one of the longest distance runs I'll ever experience as well.
We really had hoped that we would get to go home today, but a number of very good reasons have delayed our departure.
First, Harper's temperature continues to spike at times. Personally, I believe a lot of it is psychosomatic. Not that Harper is expecting her temperature to increase when she is stressed, but that her temperature increases as a reaction to her stress. She doesn't (and understandably so) like it here at the hospital. She doesn't like needles, the sight or mention of blood, nor even the appearance that nurses are putting on gloves.
Second, Harper has been retaining more fluid than she should. Now, that could partially be due to the fact that they've, at times, been drowning her with IV fluids (for good reason - don't want chemo hanging around in the bladder too long). While I think the tumors are likely shrinking, the fluid being retained was replacing them to take up available "space" in her abdomen. Plus her ankles and feet have been swollen. It looks so uncomfortable.
So, a couple of things happened today that I think move us closer to discharge. 1) they switched her antibiotic - if it IS any type of infection causing her temperature spike, my hope is the combined spectrums of the two new drugs (clindamyacin and cefipine) will take care of it; and 2) they added Lasix - which should take the fluid off of her.
But we still have the issue that her oxygenation is measuring low when she's not on oxygen. It's not dramatically low (running 88-92%) but low enough that the nurses were just in here messing with it. I don't really want her to go home on oxygen, but at this point, I'll take it if it gets us out of here. Plus, they gave her a transfusion today - some extra red blood cells can't hurt.
I'll also be thrilled for a night without nurses coming in constantly. Honestly, I like the nursing staff here, but their insistence of coming in and messing with kids while they're sleeping for what really feel like goofy things is starting to wear me down. For example, yesterday, the nurse came in at 10:30 pm to weigh her. Really? 10:30 pm seems like a good time to do this? Are you serious? Yes, you are on night shift, but we're doing our best to let Harper rest. Go away.
Melissa gets mad at me for getting mad at them. But, so is life.
Today, though, I got a chance to catch a breath. With not a lot going on in the afternoon, and Harper resting, I went home to spend a few hours with Cadence. We played a game, watched a movie, and ate a delicious dinner provided by a neighbor (Melissa had dinner delivered to the hospital which I hear Harper liked too - score!). It was nice to sit and relax for a few hours, even if they ended up feeling like very short hours.
But, I think it was a needed break. Sometimes you have to just sit and catch your breath, so you can run the next leg.
Marathon - here we come.
We really had hoped that we would get to go home today, but a number of very good reasons have delayed our departure.
First, Harper's temperature continues to spike at times. Personally, I believe a lot of it is psychosomatic. Not that Harper is expecting her temperature to increase when she is stressed, but that her temperature increases as a reaction to her stress. She doesn't (and understandably so) like it here at the hospital. She doesn't like needles, the sight or mention of blood, nor even the appearance that nurses are putting on gloves.
Second, Harper has been retaining more fluid than she should. Now, that could partially be due to the fact that they've, at times, been drowning her with IV fluids (for good reason - don't want chemo hanging around in the bladder too long). While I think the tumors are likely shrinking, the fluid being retained was replacing them to take up available "space" in her abdomen. Plus her ankles and feet have been swollen. It looks so uncomfortable.
So, a couple of things happened today that I think move us closer to discharge. 1) they switched her antibiotic - if it IS any type of infection causing her temperature spike, my hope is the combined spectrums of the two new drugs (clindamyacin and cefipine) will take care of it; and 2) they added Lasix - which should take the fluid off of her.
But we still have the issue that her oxygenation is measuring low when she's not on oxygen. It's not dramatically low (running 88-92%) but low enough that the nurses were just in here messing with it. I don't really want her to go home on oxygen, but at this point, I'll take it if it gets us out of here. Plus, they gave her a transfusion today - some extra red blood cells can't hurt.
I'll also be thrilled for a night without nurses coming in constantly. Honestly, I like the nursing staff here, but their insistence of coming in and messing with kids while they're sleeping for what really feel like goofy things is starting to wear me down. For example, yesterday, the nurse came in at 10:30 pm to weigh her. Really? 10:30 pm seems like a good time to do this? Are you serious? Yes, you are on night shift, but we're doing our best to let Harper rest. Go away.
Melissa gets mad at me for getting mad at them. But, so is life.
Today, though, I got a chance to catch a breath. With not a lot going on in the afternoon, and Harper resting, I went home to spend a few hours with Cadence. We played a game, watched a movie, and ate a delicious dinner provided by a neighbor (Melissa had dinner delivered to the hospital which I hear Harper liked too - score!). It was nice to sit and relax for a few hours, even if they ended up feeling like very short hours.
But, I think it was a needed break. Sometimes you have to just sit and catch your breath, so you can run the next leg.
Marathon - here we come.
Sunday, May 19, 2013
A better day
Today was a better day. Harper's leg pain mostly resolved. She still slept a lot, but she was a lot more comfortable.
The doctors are talking about Harper being ready to go home as soon as she can get off the IV fluids. I spent most of the day at home cleaning the house, with Melissa's parents and my brother prepping for Harper to come home.
Suffice it to say, we're more than a little excited. It will be so nice to get her home. And I am selfishly looking forward to sleeping in my own bed.
Before all this, all the girls shared a room, with Harper and Finley sharing a bed. But, considering that Harper is going to be more susceptible to things as the chemo progresses, we decided that Harper should have her own room. We set it up this afternoon. Complete with horse pictures.
I am more than a little worried, though, about her current lack of strength, and the fact that her bedroom is on the second floor. I can foresee the stairs being a huge challenge.
We also made a tough decision and sent our cat, Lacey, to stay with my mother for awhile. She jumps on the table, and walks on the counters. We don't want her to pass anything along, so to keep the house cleaner, we decided to send Lacey on vacation.
Harper's not going to like it though, because she loves Lacey. Not going to tell her until she asks, and then there'll likely be a breakdown.
Tomorrow, if all goes well, will be an even better day.
The doctors are talking about Harper being ready to go home as soon as she can get off the IV fluids. I spent most of the day at home cleaning the house, with Melissa's parents and my brother prepping for Harper to come home.
Suffice it to say, we're more than a little excited. It will be so nice to get her home. And I am selfishly looking forward to sleeping in my own bed.
Before all this, all the girls shared a room, with Harper and Finley sharing a bed. But, considering that Harper is going to be more susceptible to things as the chemo progresses, we decided that Harper should have her own room. We set it up this afternoon. Complete with horse pictures.
I am more than a little worried, though, about her current lack of strength, and the fact that her bedroom is on the second floor. I can foresee the stairs being a huge challenge.
We also made a tough decision and sent our cat, Lacey, to stay with my mother for awhile. She jumps on the table, and walks on the counters. We don't want her to pass anything along, so to keep the house cleaner, we decided to send Lacey on vacation.
Harper's not going to like it though, because she loves Lacey. Not going to tell her until she asks, and then there'll likely be a breakdown.
Tomorrow, if all goes well, will be an even better day.
Ups and Downs
Yesterday (Saturday) morning, Harper was having the best day since we were admitted and then diagnosed. She was awake, alert, and wanting to leave her room. We took a walk, ate in the family area and we really enjoyed ourselves, as much as we could
Yesterday afternoon, however, after the administration of her 3rd chemo drug, vincristine, she went back downhill. She complained of stomach pain, and nausea. Later, she complained heavily of her legs being "yucky", "icky" and "gucky." She couldn't sit still. She was up out of bed, back in bed, thrashing her legs, unable to get comfortable.
It was a very long night, and I actually got a very little bit of sleep, as she only wanted to cuddle up with her mom. Her mom had likely one of the rougher nights here.
I honestly likely didn't help matters a lot, as I struggled to keep my patience with the nursing staff. It seemed to me (whether I was right or wrong) that they weren't doing everything they could to address her discomfort, and at times were doing things, like trying to weigh her or take standard vitals, at extremely bad times, based upon Harper's obvious discomfort.
Melissa told me to just go home at one point, and I even snapped at her. That's when I realized it was probably me in the wrong (though I still believe they could do better on some points).
So, we're seeing signs of improvement, but the chemo IS taking its toll. I'm just hopeful the worst is behind us for this round.
Yesterday afternoon, however, after the administration of her 3rd chemo drug, vincristine, she went back downhill. She complained of stomach pain, and nausea. Later, she complained heavily of her legs being "yucky", "icky" and "gucky." She couldn't sit still. She was up out of bed, back in bed, thrashing her legs, unable to get comfortable.
It was a very long night, and I actually got a very little bit of sleep, as she only wanted to cuddle up with her mom. Her mom had likely one of the rougher nights here.
I honestly likely didn't help matters a lot, as I struggled to keep my patience with the nursing staff. It seemed to me (whether I was right or wrong) that they weren't doing everything they could to address her discomfort, and at times were doing things, like trying to weigh her or take standard vitals, at extremely bad times, based upon Harper's obvious discomfort.
Melissa told me to just go home at one point, and I even snapped at her. That's when I realized it was probably me in the wrong (though I still believe they could do better on some points).
So, we're seeing signs of improvement, but the chemo IS taking its toll. I'm just hopeful the worst is behind us for this round.
Saturday, May 18, 2013
She's back!
For the past week, we've been desperately missing our little girl. The sleepy, quiet, sick girl in bed has not been our baby.
But, in a strange twist I didn't expect, it would seem that as soon as we started the chemo, our Harper is starting to make a reappearance.
We finally got the chemo started last night, just before midnight. The adventures of the day had really worn Harper out, so she actually slept through it almost completely, except for her multiple bathroom needs. Seems those multiple laxatives finally caught up with her - and we couldn't be happier.
This morning, she asked to go to the family area. Woo hoo! She got herself up. We pinned her central line to her robe (to keep it from pulling) and she walked, unsteady and a little dizzy, but with minimal assistance into the family area. We sat at some counter-height stools, we made and she ate some oatmeal, dunked some cookies in milk and watched some TV. Then we moved to a couch, and she napped, sitting up, for a short while. Seems the activity, after a week of none, took it out of her quickly.
We came back to the room, and she asked for a movie. I got Rio from the nurses station, which she was happy with. Shortly after that, they delivered her lunch - a cheeseburger. But it had mashed potatoes, instead of fries. She wanted fries.
She wanted fries!!!
I almost ran downstairs and bought some at McDonalds.
She's eaten about half of a small fry, and is now napping again, after watching most of Rio.
Small victories, but we'll take them all day long.
She's in there. And she's gonna do this.
She's back!
But, in a strange twist I didn't expect, it would seem that as soon as we started the chemo, our Harper is starting to make a reappearance.
We finally got the chemo started last night, just before midnight. The adventures of the day had really worn Harper out, so she actually slept through it almost completely, except for her multiple bathroom needs. Seems those multiple laxatives finally caught up with her - and we couldn't be happier.
This morning, she asked to go to the family area. Woo hoo! She got herself up. We pinned her central line to her robe (to keep it from pulling) and she walked, unsteady and a little dizzy, but with minimal assistance into the family area. We sat at some counter-height stools, we made and she ate some oatmeal, dunked some cookies in milk and watched some TV. Then we moved to a couch, and she napped, sitting up, for a short while. Seems the activity, after a week of none, took it out of her quickly.
We came back to the room, and she asked for a movie. I got Rio from the nurses station, which she was happy with. Shortly after that, they delivered her lunch - a cheeseburger. But it had mashed potatoes, instead of fries. She wanted fries.
She wanted fries!!!
I almost ran downstairs and bought some at McDonalds.
She's eaten about half of a small fry, and is now napping again, after watching most of Rio.
Small victories, but we'll take them all day long.
She's in there. And she's gonna do this.
She's back!
Friday, May 17, 2013
Impatiently
With only a few minutes to spare before midnight, we are finally getting underway with the chemo. Today was a lot longer than I'd anticipated, but I haven't done a terribly good job of anticipating so far, so what's new?
It was really hard to get up this morning. The long days, short, interrupted nights and stress is beginning to take its toll - on all of us. I find myself much less patient than I would normally be with the hospital staff. They're doing very good work, and I understand that they want to meet our expectations, but when it's your baby, and you think it should be done better (and you combine that with stress and lack of quality sleep) its easy to start complaining.
We started our day with news that not only were we doing a GFR test and a bone scan (apparently you can do 2 nuclear medicine studies in the same day) but also an abdominal X-ray. Not something that had been told to us the night before, but ok... We can deal.
Harper was pretty rough to start the day, but she was making slow progress on getting out of bed to use the potty. All pee though - no poop since last Saturday - almost a week without a bowel movement.
She got on the X-ray table, and then, when asked to get off a short while later, questioned why she had to work so hard for such a short time on the table. Can't blame her. On to the next thing.
In the nuclear medicine department (which is in Norton Hospital across the street - fortunately there is an underground tunnel which we are now quite familiar with) they put her on an even higher table (struggle again to get on it) and did the GFR. Fortunately, that only takes 6 minutes or so. Down again. This time she started to slow... Meaning Harper didn't want to move to get off the table. The tech had customers waiting, so we started to push - at which point Harper pretty much shut down.
See, Harper is spunky, but when stress starts to push, and things don't go as planned, she's not really what you'd call a "go with the flow" kind of gal. At home, before all this, she would get upset and run away to another room to calm down. That was one of her main coping mechanisms. Here, laid up in bed, barely able to walk due to pain, she doesn't really have that option. So, she closes her eyes, breathes deeply, and does what really appears to be meditation. We didn't teach it to her, she just started doing it. When there's lots of time available, it works quite well. When time is short, it's a pain, and if we push on her while she meditates, she starts yelling at us to stop talking, telling us she's trying to breath - which she is.
So, they injected the bone scan nuclear liquid and sent us back to the room to wait the required 2 hours.
Later, we found ourselves back in nuclear medicine, after traversing the underground tunnel again (for the third time). 45 minutes later we were done again, and waiting for transport. But, transport didn't come immediately. I began to lose my patience. I even called the desk on our floor to ask them where she was. She nicely explained they have only 1 transport person for the whole unit, and she was on her way. After hanging up, I threatened to take us back ourselves. I mean, after a few trips, we certainly knew our way... But, she showed up, and we trudged back to our room again.
Ok - we were done traveling for the day, right? Wrong. Only minutes after getting Harper back in bed, they came to tell us we had to go back. The radiologist (I assume) looked at the bone scan and determined that Harper had her head cocked to the side, so they needed to rescan her head. Blood pressure building... We spelunked under the street again and rescanned her head. Harper was actually extremely patient. And this time, the transport person waited for us - maybe my earlier phone call worked.
Back to our room. Now time for chemo, right? Nope, not yet. See, the order hadn't been put in yet. Excuse me? We signed the papers this morning? The doctor hasn't ordered it yet? Again, unacceptable. Not cool. 8pm till its ready? Really!? Do you all do anything fast around here?
Oh, and didn't someone tell you we're holding the vincristine because she hasn't had a bowel movement? Umm, no, no one told us that. And we're going to start lactulose every 2 hours. We should get a bowel movement with 2-3 doses. Boy, wouldn't
that have been nice to know 4-6 hours ago? Maybe we could have avoided holding on the first dose?
Oh, and one more thing... We have to check her pee to ensure the specific gravity is in range. News to us again. So, lets just push oral fluids to a child with a distended abdomen and constipation. I'm sure that will be fine...
After much heartbreak, we have had a bowel movement (still holding the vincristine) and her pee checked out after the third attempt.
So, now the chemo (2/3 of it) hangs next to Harper's bed. Harper is completely exhausted, but more comfortable (after the bowel movement). Soon the toxic meds will be coursing through her veins.
And I have no patience for waiting on it either. I pray it works quickly. I pray she tolerates it.
I pray - impatiently.
It was really hard to get up this morning. The long days, short, interrupted nights and stress is beginning to take its toll - on all of us. I find myself much less patient than I would normally be with the hospital staff. They're doing very good work, and I understand that they want to meet our expectations, but when it's your baby, and you think it should be done better (and you combine that with stress and lack of quality sleep) its easy to start complaining.
We started our day with news that not only were we doing a GFR test and a bone scan (apparently you can do 2 nuclear medicine studies in the same day) but also an abdominal X-ray. Not something that had been told to us the night before, but ok... We can deal.
Harper was pretty rough to start the day, but she was making slow progress on getting out of bed to use the potty. All pee though - no poop since last Saturday - almost a week without a bowel movement.
She got on the X-ray table, and then, when asked to get off a short while later, questioned why she had to work so hard for such a short time on the table. Can't blame her. On to the next thing.
In the nuclear medicine department (which is in Norton Hospital across the street - fortunately there is an underground tunnel which we are now quite familiar with) they put her on an even higher table (struggle again to get on it) and did the GFR. Fortunately, that only takes 6 minutes or so. Down again. This time she started to slow... Meaning Harper didn't want to move to get off the table. The tech had customers waiting, so we started to push - at which point Harper pretty much shut down.
See, Harper is spunky, but when stress starts to push, and things don't go as planned, she's not really what you'd call a "go with the flow" kind of gal. At home, before all this, she would get upset and run away to another room to calm down. That was one of her main coping mechanisms. Here, laid up in bed, barely able to walk due to pain, she doesn't really have that option. So, she closes her eyes, breathes deeply, and does what really appears to be meditation. We didn't teach it to her, she just started doing it. When there's lots of time available, it works quite well. When time is short, it's a pain, and if we push on her while she meditates, she starts yelling at us to stop talking, telling us she's trying to breath - which she is.
So, they injected the bone scan nuclear liquid and sent us back to the room to wait the required 2 hours.
Later, we found ourselves back in nuclear medicine, after traversing the underground tunnel again (for the third time). 45 minutes later we were done again, and waiting for transport. But, transport didn't come immediately. I began to lose my patience. I even called the desk on our floor to ask them where she was. She nicely explained they have only 1 transport person for the whole unit, and she was on her way. After hanging up, I threatened to take us back ourselves. I mean, after a few trips, we certainly knew our way... But, she showed up, and we trudged back to our room again.
Ok - we were done traveling for the day, right? Wrong. Only minutes after getting Harper back in bed, they came to tell us we had to go back. The radiologist (I assume) looked at the bone scan and determined that Harper had her head cocked to the side, so they needed to rescan her head. Blood pressure building... We spelunked under the street again and rescanned her head. Harper was actually extremely patient. And this time, the transport person waited for us - maybe my earlier phone call worked.
Back to our room. Now time for chemo, right? Nope, not yet. See, the order hadn't been put in yet. Excuse me? We signed the papers this morning? The doctor hasn't ordered it yet? Again, unacceptable. Not cool. 8pm till its ready? Really!? Do you all do anything fast around here?
Oh, and didn't someone tell you we're holding the vincristine because she hasn't had a bowel movement? Umm, no, no one told us that. And we're going to start lactulose every 2 hours. We should get a bowel movement with 2-3 doses. Boy, wouldn't
that have been nice to know 4-6 hours ago? Maybe we could have avoided holding on the first dose?
Oh, and one more thing... We have to check her pee to ensure the specific gravity is in range. News to us again. So, lets just push oral fluids to a child with a distended abdomen and constipation. I'm sure that will be fine...
After much heartbreak, we have had a bowel movement (still holding the vincristine) and her pee checked out after the third attempt.
So, now the chemo (2/3 of it) hangs next to Harper's bed. Harper is completely exhausted, but more comfortable (after the bowel movement). Soon the toxic meds will be coursing through her veins.
And I have no patience for waiting on it either. I pray it works quickly. I pray she tolerates it.
I pray - impatiently.
Thursday, May 16, 2013
And they're off...
So, with no prior training and having met our jockey (oncologist) just days ago, we are now standing in the paddock. And tomorrow, the gates will fly open, and it will be the longest (and most important) "two minutes" of Harper's life. A Derby/horse racing reference seems pretty accurate here, but with obviously higher stakes.
Tomorrow, after a bone scan, we will initiate chemotherapy. The drugs will start with the same ones we started discussing last night: vincristine, doxorubicin and cyclophosphamide. The risks are the same. The rewards are priceless. There will also be etoposide and carboplatonin used as well, often alternating "cocktails."
It's scary, of course, but 24 hours has brought a lot of acceptance and we're beginning to brace for the next phase. We expect vomiting, hair loss, constipation or diarrhea (or both), and obviously weakness. We hope we don't see seizures, heart damage, and kidney damage (her healthy one).
We'll also be expecting another major surgery at week 6 or so, where they will remove her left kidney. And we'll be doing some stem cell harvesting to prepare for a (unfortunately relatively likely) recurrence which will probably require high dose chemo with stem cell rescue.
With her immune system basically under attack beginning tomorrow, for the very first time, Melissa and I made the decision to restrict visitors this weekend. Several family members had hoped to come visit this weekend, but we have to put Harper first, and this is one of the ways we want to do it. Based upon the possible/likely effects of the chemo, it will probably not be a particularly cheery time for her anyways.
Today, she showed more signs of life, though she is not the Harper we all knew before this. She was awake most of the day, and did get up a few times to go potty. However, she is still in pain, with multiple meds on board to help make her comfortable. Plus her BP meds are still making her zombie-like at times. Her central line and abdominal incision are healing nicely, and she has already admitted the central line is much better than being stuck multiple times a day. The doctor asked her if she wanted to name it, but she doesn't like it that much yet.
I want to again thank everyone who has called, written, emailed, mailed packages, brought food, shared our posts/statuses or just plain prayed for us. We are so blessed by you all, and can feel your prayers lifting us up. I am convinced that our spirits would be in a very different place (and our outcome less hopeful) if we did not have the incredible network of friends and family that have so immediately stepped up and offered us assistance. I am humbled and literally in tears thinking of the outpouring of support we have received.
One I'll share is a little banner a friend at work put together. I teared up when I saw it.
It's quiet here now. Harper is sleeping (though apparently having some vivid dreams from the pain meds) and we have a couple hours until they come in to take her vitals and deliver more meds, so the gates haven't flung open yet.
I can almost here the call to the post. I can visualize the finish line. Lets jump out strong, hold close to the rail... I can smell the roses from here.
Tomorrow, after a bone scan, we will initiate chemotherapy. The drugs will start with the same ones we started discussing last night: vincristine, doxorubicin and cyclophosphamide. The risks are the same. The rewards are priceless. There will also be etoposide and carboplatonin used as well, often alternating "cocktails."
It's scary, of course, but 24 hours has brought a lot of acceptance and we're beginning to brace for the next phase. We expect vomiting, hair loss, constipation or diarrhea (or both), and obviously weakness. We hope we don't see seizures, heart damage, and kidney damage (her healthy one).
We'll also be expecting another major surgery at week 6 or so, where they will remove her left kidney. And we'll be doing some stem cell harvesting to prepare for a (unfortunately relatively likely) recurrence which will probably require high dose chemo with stem cell rescue.
With her immune system basically under attack beginning tomorrow, for the very first time, Melissa and I made the decision to restrict visitors this weekend. Several family members had hoped to come visit this weekend, but we have to put Harper first, and this is one of the ways we want to do it. Based upon the possible/likely effects of the chemo, it will probably not be a particularly cheery time for her anyways.
Today, she showed more signs of life, though she is not the Harper we all knew before this. She was awake most of the day, and did get up a few times to go potty. However, she is still in pain, with multiple meds on board to help make her comfortable. Plus her BP meds are still making her zombie-like at times. Her central line and abdominal incision are healing nicely, and she has already admitted the central line is much better than being stuck multiple times a day. The doctor asked her if she wanted to name it, but she doesn't like it that much yet.
I want to again thank everyone who has called, written, emailed, mailed packages, brought food, shared our posts/statuses or just plain prayed for us. We are so blessed by you all, and can feel your prayers lifting us up. I am convinced that our spirits would be in a very different place (and our outcome less hopeful) if we did not have the incredible network of friends and family that have so immediately stepped up and offered us assistance. I am humbled and literally in tears thinking of the outpouring of support we have received.
One I'll share is a little banner a friend at work put together. I teared up when I saw it.
It's quiet here now. Harper is sleeping (though apparently having some vivid dreams from the pain meds) and we have a couple hours until they come in to take her vitals and deliver more meds, so the gates haven't flung open yet.
I can almost here the call to the post. I can visualize the finish line. Lets jump out strong, hold close to the rail... I can smell the roses from here.
Wednesday, May 15, 2013
It's official
I wish I had a way to pretty this up, but I'm not sure I currently have the strength. Unfortunately, you'll have to take this raw.
Harper's tumor has been identified as a Wilms tumor. It is Stage 4 (of 5) and aggressive (metastatic).
The plan is aggressive chemo - starting with a combo of vincristine, doxorubicin and cyclophosphamide. The exact "roadmap" will be shared with us tomorrow.
Treatment could begin as early as tomorrow, after an EKG to establish her heart function baseline.
In 2 weeks, she'll likely lose her hair. The doxorubicin could damage her heart. The cyclophosphamide endangers her ability to later have children. The vincristine may cause (reversible) nerve damage.
Her long-term survival is far from guaranteed. Her pain is most certainly guaranteed.
So, knowing doesn't help us feel better, but it does move us down the path of treatment.
After 2 or 3 rounds of chemo (likely ~3 weeks each), if the tumor engulfing her kidney shrinks (the intended response) she will have her kidney (left) removed. Thankfully her other kidney (right) is apparently completely healthy.
Yes, we've cried. Yes, we will again. Yes, we're scared. Yes, we believe she can beat this.
No, we are not giving up. Stay tuned.
Harper's tumor has been identified as a Wilms tumor. It is Stage 4 (of 5) and aggressive (metastatic).
The plan is aggressive chemo - starting with a combo of vincristine, doxorubicin and cyclophosphamide. The exact "roadmap" will be shared with us tomorrow.
Treatment could begin as early as tomorrow, after an EKG to establish her heart function baseline.
In 2 weeks, she'll likely lose her hair. The doxorubicin could damage her heart. The cyclophosphamide endangers her ability to later have children. The vincristine may cause (reversible) nerve damage.
Her long-term survival is far from guaranteed. Her pain is most certainly guaranteed.
So, knowing doesn't help us feel better, but it does move us down the path of treatment.
After 2 or 3 rounds of chemo (likely ~3 weeks each), if the tumor engulfing her kidney shrinks (the intended response) she will have her kidney (left) removed. Thankfully her other kidney (right) is apparently completely healthy.
Yes, we've cried. Yes, we will again. Yes, we're scared. Yes, we believe she can beat this.
No, we are not giving up. Stay tuned.
Wish there was news to share
Unfortunately, we're still waiting to hear anything about the pathology report. As soon as we know and can process, we'll share.
Thank you to everyone who has been so supportive.
Thank you to everyone who has been so supportive.
Morning update - Day 6 (I think)
I think this is Day 6, at least if I count last Friday as Day 1. It continues to be quite a ride - one that I keep praying (and I know many others are joining me) comes to happy conclusion.
Last night was a very long night for Harper. Her temperature spiked after her surgery, so the nurse came in hourly to check her vitals, give meds, etc.
Fortunately, her BP appears to be pretty well controlled at the moment. So, we've moved past that issue onto 2 more.
First, her temp. She was above 101 at least twice through the night. The concern is that she could be developing an infection. If she were, it would most likely be from incisions and surgery yesterday. That would be bad. So, monitoring her temp closely was very important.
Once they got a couple high temp readings, the next thing was to get some blood for a culture. Previously, when they wanted to get blood for a culture, they needed to do a stick. Day 2 they tried twice (with us physically restraining her) unsuccessfully. But, thanks to her brand-spankin' new central line, they were happy to pull the blood there, with no needles involved. The little miracles are often the best.
Once the decision was made to culture, they were willing to give her Tylenol - which dropped her fever fast.
The second new problem is her oxygenation. Her abdomen is now swollen from something beyond the tutors (though I'm pretty sure they continue to grow). The surgery yesterday is also causing swelling. So, it is getting harder and harder for her to breath. She doesn't have any airway restriction, per-se, but she can't breath deeply. Her diaphragm has nowhere to go.
So, also last night, they initiated her on oxygen through a nasal cannula. That, of course, further irritated her already dry nose (which had bled once already).
There were also 2 trips to the bathroom. The first was unsuccessful, but she went the second time. They'd had her on IV fluids (in both lumens of her central line) since the surgery concluded, so her little bladder was pretty full. But they had also put in a urinary catheter during the surgery (took it out before she woke up thankfully) so she was told it would sting when she peed. She then didn't want to pee.
Finally, around 5am, they came in for a chest X-ray. They brought the machine into the room, which was less disturbing, but it still was another wake up.
Then, the cherry on top. They had us move rooms this morning. We were in an overflow area, which was more quiet, but farther away from all the stuff (like the nourishment room and the family area) and required us to go through 2 secured doors to go to the main area and back. I'm thankful to be closer now, but it was another thing to disrupt.
The main reason they want us in the main area is that we should be starting chemo soon, so we need to be on this side of the floor.
Here's another uplifting photo - from a local gas station.
Last night was a very long night for Harper. Her temperature spiked after her surgery, so the nurse came in hourly to check her vitals, give meds, etc.
Fortunately, her BP appears to be pretty well controlled at the moment. So, we've moved past that issue onto 2 more.
First, her temp. She was above 101 at least twice through the night. The concern is that she could be developing an infection. If she were, it would most likely be from incisions and surgery yesterday. That would be bad. So, monitoring her temp closely was very important.
Once they got a couple high temp readings, the next thing was to get some blood for a culture. Previously, when they wanted to get blood for a culture, they needed to do a stick. Day 2 they tried twice (with us physically restraining her) unsuccessfully. But, thanks to her brand-spankin' new central line, they were happy to pull the blood there, with no needles involved. The little miracles are often the best.
Once the decision was made to culture, they were willing to give her Tylenol - which dropped her fever fast.
The second new problem is her oxygenation. Her abdomen is now swollen from something beyond the tutors (though I'm pretty sure they continue to grow). The surgery yesterday is also causing swelling. So, it is getting harder and harder for her to breath. She doesn't have any airway restriction, per-se, but she can't breath deeply. Her diaphragm has nowhere to go.
So, also last night, they initiated her on oxygen through a nasal cannula. That, of course, further irritated her already dry nose (which had bled once already).
There were also 2 trips to the bathroom. The first was unsuccessful, but she went the second time. They'd had her on IV fluids (in both lumens of her central line) since the surgery concluded, so her little bladder was pretty full. But they had also put in a urinary catheter during the surgery (took it out before she woke up thankfully) so she was told it would sting when she peed. She then didn't want to pee.
Finally, around 5am, they came in for a chest X-ray. They brought the machine into the room, which was less disturbing, but it still was another wake up.
Then, the cherry on top. They had us move rooms this morning. We were in an overflow area, which was more quiet, but farther away from all the stuff (like the nourishment room and the family area) and required us to go through 2 secured doors to go to the main area and back. I'm thankful to be closer now, but it was another thing to disrupt.
The main reason they want us in the main area is that we should be starting chemo soon, so we need to be on this side of the floor.
Here's another uplifting photo - from a local gas station.
The waiting
The waiting is the best and the worst part at the same time.
After all that has happened over the past few days, times of quiet, between vital checks, med administration, blood draws and the painful trips to the potty have a wonderful, restful quality. When she's not in pain (meds are in full force), she rests quietly. Melissa and I get to watch her sleep.
Watching her sleep is something I'd forgotten can be so fulfilling. Not since she was pretty small have I really just sat, doing nothing else, and just watch her rest and dream. It's beautiful. She is so precious, and I'm afraid "life" has distracted me, and I'd forgotten how wonderful and miraculous she is. Sad this situation is what it took for me to realize and remember.
But the waiting has a dark side. The counter-balance (right now) is the wondering and fearing the diagnosis (and by extension, the prognosis). At this moment, there is so much we don't know. Something as simple as when we can go home. (Which she begs for almost everyday). Or, what drugs will they use (as I know I'll quickly catch up on my oncology drugs as soon as we know her treatment path).
So, we sit, bathed in wonder and fear at the same time. Honestly, until this thing is named and we are clearly on the road to cure, I doubt it will change much.
Our new norm, for now...
Tuesday, May 14, 2013
Deja Vu - 2 - Day 5 continued
Harper did beautifully in surgery. There were no immediate complications. They implanted the central line (a Broviac) which is tunneled under the skin. It has 2 lumens (tubes). Here's a drawing of one:
They also completed another biopsy of one of the liver growths using surgery (1.5 inch incision) which the pathology lab assured our surgeon was enough tissue to complete their work and provide a definitive identification. (finally)
Harper is in some pain, but that's completely understandable. They've got her on pain meds.
Tomorrow we hope to hear more from the pathology report. I really am hoping it doesn't take until Thursday.
We had a slew of visitors today, and our room is literally overflowing with gifts. Our sincere thanks to all those who have called, texted, sent things or personally brought smiles to our room. All are precious gifts and are appreciated. We are loved, she is loved and we're humbled by it all.
On another positive note, her BP seems to be finally falling into line. The readings are the best we've seen since we got to the hospital. And Harper seems to be starting o adjust to the meds. My hope is that is a trend that will continue.
We have 1 more peripheral IV to remove and we'll be free of any tubes in her arms. That will be such a blessing as well.
Keep us in your prayers as we hunker down and prepare for what tomorrow brings.
They also completed another biopsy of one of the liver growths using surgery (1.5 inch incision) which the pathology lab assured our surgeon was enough tissue to complete their work and provide a definitive identification. (finally)
Harper is in some pain, but that's completely understandable. They've got her on pain meds.
Tomorrow we hope to hear more from the pathology report. I really am hoping it doesn't take until Thursday.
We had a slew of visitors today, and our room is literally overflowing with gifts. Our sincere thanks to all those who have called, texted, sent things or personally brought smiles to our room. All are precious gifts and are appreciated. We are loved, she is loved and we're humbled by it all.
On another positive note, her BP seems to be finally falling into line. The readings are the best we've seen since we got to the hospital. And Harper seems to be starting o adjust to the meds. My hope is that is a trend that will continue.
We have 1 more peripheral IV to remove and we'll be free of any tubes in her arms. That will be such a blessing as well.
Keep us in your prayers as we hunker down and prepare for what tomorrow brings.
Day 5 - Deja Vu & radiology #fail
So, we had hoped Day 5 would bring us a diagnosis, but since none of this has been planned, it is fitting that today would not go as planned either.
Turns out the needle biopsy that was done yesterday got more healthy tissue than tumor tissue. #fail So, we have to do it again. But, this time, instead of a needle biopsy, they are doing an incision and a visual sample (needle was radiology assisted). In addition, they are going to put in a central line.
Harper took the news better that I feared she would. She's obviously upset, but the crying was shorter. Of course, I'm confident when it comes time to head downstairs she will wind herself up again. It's so hard to see her that way. We keep explaining that we have to do these things to get well, but it doesn't seem to help. I think she really truly understands, but she is so overwhelmed with anxiety it clouds her view. I completely understand.
I also worry how she will react when she wakes up and have a semi-permanent set of tubes sticking out of her. We'll just have to take it as it comes and explain it will let them take the ones out of her hand.
More to come after the procedure. Keep praying.
Another cute pic.
Monday, May 13, 2013
Day 4 - continued
The days are beginning to run together. Melissa and I have each lost track of days before in certain circumstances, but for Harper, I think it's her first experience. Yesterday (I think, though not positive) she realized she lost a day somewhere. It really freaked it out. I think it was partially because it reinforced for her we'd been here longer than she wanted. She periodically begs to go home. It's so hard to find ways to tell her no, when I'd love nothing more.
A friend brought us a calendar today. We're now checking off the days, and keeping a log of visitors. Thanks Betty.
We were originally scheduled for Harper's biopsy at 10am. That time came and went, and we sat, painfully, in the ICU, crowded in our little corner, surrounded by beeps, alarms, and the cries of our neighbor.
This is AFTER we waited all weekend for the biopsy. As I understand it, we had to wait because the radiologist wasn't "available" over the weekend. I'm actually strangely looking forward to confronting someone on this point... Though I was too numb by the situation at the time, now that I'm more settled with where we are and what we're going through, it makes me a little mad they didn't have a radiologist on call. We would be days ahead now if... But I can't dwell there.
After a realization of a miscommunication between the ICU and the radiology department (who had been sitting waiting for us, while we sat and waited for them) we got down to the procedure at about 12:30. This is after Harper had been "nothing by mouth" (NPO) since midnight and had nothing to drink since 6 AM.
We spent a little time standing with Harper in her bed in the hallway outside where the procedure would occur. Similar to the needle discussions, Harper was attempting to talk us out of the procedure. We finally got her to let them put the Versed in her IV, and she was out in less than a minute. I was quite dramatic, but it was good to see her go under, so we knew she would be out for the procedure.
We quickly ate lunch in the waiting room (thanks Adrienne and Paul for bringing us the salads) and had just finished when the radiologist came in to tell us the procedure went well (again, we waited 2 days for a 20 minute procedure... Grrr) and we rejoined her and headed back to our little slice of heaven.
After the anesthesia, Harper slept pretty much a full 4 hours. She woke up briefly when they came into do an ultrasound of her kidneys, but I wouldn't call it awake, as she doesn't remember it. I love Versed.
Around 3 we got the best news in several days - they would be moving us back up to the oncology floor. They felt the BP was controlled enough that we didn't need the ICU any longer. Praise The Lord, the first of what I hope to be many answered prayers.
So, we're back on 7, in the oncology unit, loving the quiet and the space. Harper dug in and ate about a pound of grapes (which we loved seeing). Her little belly, since there isn't as much room as usual anyways, because of the growths and swollen liver, was so full. First time we've seen her really eat in days.
Tomorrow. If we're lucky, we might get word on the initial pathology findings, which could help us know what this stuff is and then how to fight it.
If you don't know, Melissa is also keeping a "blog" of sorts on CaringBridge. The link is here if you'd like to read it and leave a note of encouragement for Harper.
Also, as I noted in an earlier post, we are also encouraging people to support the Kosair Children's Hospital here in Louisville. You can visit our fundraising site and sponsor The Incredible Harps here. I'll note also that the hospital did not in any way encourage us to do this. We realized that we are extremely blessed, and wanted to help support this wonderful facility so that others less fortunate can continue to receive great care as well.
Here's to tomorrow. Whatever comes, lets at least know what we're up against.
Oh, and here's a cute pic of Harper - from some time back.
Day 2, 3 & 4 - Awaiting the biopsy
Day 2 & 3 brought a ton of visitors for Harper, and began to reinforce to us how special this little girl is to so many people. I won't recount all the names, as I'm sure I would forget someone, but it was a steady stream of friends and family, a ton of cards and gifts, and things to keep Harper occupied.
The end of Day 2 got interesting (as if we needed more excitement). The nurses kept checking and re-checking Harper's blood pressure. They didn't believe the results they were getting with the automated BP monitors. They even brought in the old fashioned manual ones to make sure the automated machine was accurate. Unfortunately, it was.
Her blood pressure was way up. One reading was 210/140. They called in a nephrologist (because the growth is on the kidney) who started administering intravenous meds to try to control her HP. Based upon the extremely high readings, and the multiple meds it was taking to bring it down, they decided to transfer us to the Pediatric Intensive Care Unit (PICU).
After moving, we came to realize just how lucky we were to be in the Oncology unit at Kosair. In the PICU we don't have a private room, and there is noise coming from everywhere. The nursing is more intensive, which is what we need, but that means they are in every hour, there are beeps and alarms, etc. Also, all we have is 1 convertible chair for both Melissa and I. Since we're now used to a King bed, this takes us back to College days...
There have been more needles since we go down to the PICU as well, which has not been fun. But, Harper is slowly adjusting. She is still fighting us, but she's getting braver, and her fight is more verbal - we don't have to lay on top of her and hold her down anymore. I hate holding her down.
The girl in the next bay has been pretty noisy too (understandable) and that has been freaking Harper out. The continual crying out and screaming is starting to wear her down. I think the little girl goes back to surgery today, which will at least offer Harper a short reprieve. Right now she has headphones in and is watching a movie to block out the noise.
We are this morning (Day 4) waiting for them to come get Harper and take her for her biopsy. We've been avoiding talking with her about the fact that they take tissue through a needle. Fortunately, she'll be under anesthesia, so she won't see, hear or remember anything.
We're expecting her to be away from us for something like 3 hours. It will be excruciating, but we are so anxious to know for sure what we're dealing with.
The end of Day 2 got interesting (as if we needed more excitement). The nurses kept checking and re-checking Harper's blood pressure. They didn't believe the results they were getting with the automated BP monitors. They even brought in the old fashioned manual ones to make sure the automated machine was accurate. Unfortunately, it was.
Her blood pressure was way up. One reading was 210/140. They called in a nephrologist (because the growth is on the kidney) who started administering intravenous meds to try to control her HP. Based upon the extremely high readings, and the multiple meds it was taking to bring it down, they decided to transfer us to the Pediatric Intensive Care Unit (PICU).
After moving, we came to realize just how lucky we were to be in the Oncology unit at Kosair. In the PICU we don't have a private room, and there is noise coming from everywhere. The nursing is more intensive, which is what we need, but that means they are in every hour, there are beeps and alarms, etc. Also, all we have is 1 convertible chair for both Melissa and I. Since we're now used to a King bed, this takes us back to College days...
There have been more needles since we go down to the PICU as well, which has not been fun. But, Harper is slowly adjusting. She is still fighting us, but she's getting braver, and her fight is more verbal - we don't have to lay on top of her and hold her down anymore. I hate holding her down.
The girl in the next bay has been pretty noisy too (understandable) and that has been freaking Harper out. The continual crying out and screaming is starting to wear her down. I think the little girl goes back to surgery today, which will at least offer Harper a short reprieve. Right now she has headphones in and is watching a movie to block out the noise.
We are this morning (Day 4) waiting for them to come get Harper and take her for her biopsy. We've been avoiding talking with her about the fact that they take tissue through a needle. Fortunately, she'll be under anesthesia, so she won't see, hear or remember anything.
We're expecting her to be away from us for something like 3 hours. It will be excruciating, but we are so anxious to know for sure what we're dealing with.
Sunday, May 12, 2013
Perspective
I imagine, as I've been tempted to do so myself over the last 48 hours, it would be very easy to feel very put upon, downtrodden and sorry for myself and our situation. And while I'm scared to death and have no clear picture what the future holds, I've come to have some perspective.
First, even though we're in the ICU, it could certainly be worse. On one side of us, in what appears to be a semi-permanent room, a boy, a few years older than Harper, sits, strapped into his bed, with braces all around his body and IV tubing everywhere. He may be paralyzed, or neurologically damaged. Harper, while drowsy and droopy from the BP meds, is alert, has full function of her body, and has even smiled a little today (when her school principle visited of all things :) ).
Second, the little girl on the other side of us in the ICU was in surgery most of the day (more than 8 hours), and returned back with a haggard looking family in tow and a head with rolled gauze that replaced the hair she left with. I imagine she underwent brain surgery. I have no idea her likelihood of a full recovery from whatever it is they were treating. Her family left just before 9pm, to try to reach the Ronald McDonald House in time to get a room for the night. We, on the other hand (at least the foreseeable future) have nothing quite so radical or invasive to fear, and we have been surrounded by an outpouring of love from family and friends from near and far. And, we have the opportunity to go home and get a shower and a brain break (and an emotional rest) in our home. What a blessing.
We have such wonderful and giving friends and family, who have already mobilized to provide meals, offer assistance at a moments notice, and just be available to talk. We have an incredible children's hospital that has been so warm, welcoming, and full of support since we arrived. We are so blessed, and we want to help make sure that others get the chance to receive blessings as well.
So, we have established a fundraising page, in Harper's honor (The Incredible Harps - credit to Tim Beam for that one) that benefits the Children's Hospital Foundation (supporting Kosair Children's Hospital). While we so appreciate any and all gifts to Harper to make her comfortable and entertained during this time, we also would appreciate any donation to the hospital that is hosting Harper's recovery journey.
Click Here to donate.
Thank you for everyone's love, support, prayers and encouragement.
First, even though we're in the ICU, it could certainly be worse. On one side of us, in what appears to be a semi-permanent room, a boy, a few years older than Harper, sits, strapped into his bed, with braces all around his body and IV tubing everywhere. He may be paralyzed, or neurologically damaged. Harper, while drowsy and droopy from the BP meds, is alert, has full function of her body, and has even smiled a little today (when her school principle visited of all things :) ).
Second, the little girl on the other side of us in the ICU was in surgery most of the day (more than 8 hours), and returned back with a haggard looking family in tow and a head with rolled gauze that replaced the hair she left with. I imagine she underwent brain surgery. I have no idea her likelihood of a full recovery from whatever it is they were treating. Her family left just before 9pm, to try to reach the Ronald McDonald House in time to get a room for the night. We, on the other hand (at least the foreseeable future) have nothing quite so radical or invasive to fear, and we have been surrounded by an outpouring of love from family and friends from near and far. And, we have the opportunity to go home and get a shower and a brain break (and an emotional rest) in our home. What a blessing.
We have such wonderful and giving friends and family, who have already mobilized to provide meals, offer assistance at a moments notice, and just be available to talk. We have an incredible children's hospital that has been so warm, welcoming, and full of support since we arrived. We are so blessed, and we want to help make sure that others get the chance to receive blessings as well.
So, we have established a fundraising page, in Harper's honor (The Incredible Harps - credit to Tim Beam for that one) that benefits the Children's Hospital Foundation (supporting Kosair Children's Hospital). While we so appreciate any and all gifts to Harper to make her comfortable and entertained during this time, we also would appreciate any donation to the hospital that is hosting Harper's recovery journey.
Click Here to donate.
Thank you for everyone's love, support, prayers and encouragement.
Hurry up and Wait (Day 1)
A common saying and reality from my days in the Army was "Hurry up and Wait." We were constantly moving very fast for a short period of time, followed by long stints of sitting and boredom. Our experience so far with Harper at the hospital is very similar.
After being told there was a "growth" on her kidney by the pediatrician, we moved quickly to get to the hospital. Once we arrived, we went through "Admit Express" which bypassed the ER. (Thank goodness). But there we sat for a couple of hours as we waited for someone "upstairs" to be discharged and the room to be cleaned. We were happy to wait for that... I've checked into a dirty hotel room before - I can only imagine a dirty hospital room.
While in admit express, they put in Harper's (first) IV catheter. Harper was lucky enough to inherit a healthy fear of needles from both sides of the family. In fact, when we first told her she was sick and needed to go to the hospital, her only worry was about needles. It hasn't changed much since...
So, her first IV was put in by a nurse who was incredible. She'd obviously been working with peds for a long time, and she was confident, commanding and gentle all at the same time. She talked Harper off the ledge several times, all while prepping the site and putting in the catheter. Harper took it quite well, and demonstrated her internal strength, as Melissa stood outside demonstrating the good genes she'd given that helped provide Harper with her needle anxiety.
Once the room was ready, we were shuttled up stair. Harper was actually pretty thrilled to ride in a wheelchair for the first time. (Something tells me she'll be pretty much over it by the time we get out of here). There was a flurry of activity as we settled into the room, met the nurses, the doctors rounded through, etc.
There was lots and lots going on, people in and out, but little information about what we should expect to happen next. My guess is that, well honestly, they didn't know. There was talk of surgery. Then discussion of a biopsy. We met at least 6 different doctors - surgical team, oncology team, etc. A central line? It all starts to blur a little. Maybe something over the weekend. More imaging studies? Something happening on Monday? (This was Friday night.)
The first night was rough. Not much sleep was had by anyone. As comfy as the waterproof convertible chair looked, it certainly didn't have the comfort of my bed at home. And the every hour or two wake up was reminiscent of having just brought a newborn home (but at least I wasn't changing diapers).
The first day brought choked tears, incredible anxiety, and exhaustion that was followed by little sleep. Lets hope the coming days are better. Lets hope it can only go up from here. Lets hope the days get better. I'm gonna hurry up and wait.
Middle Child Syndrome
Whether you believe Middle Child Syndrome exists or not really doesn't matter. What matters is that most middle children, including our Harper, believe it to be a real condition. Cadence is always first - first in line, fastest in a race, etc. Finley is the center of attention - because she makes it so. Harper often, I believe, feels a little left out.
Well, today, and for the past few days, she has taken center stage, and not for a reason she or any of us would like.
This Mother's Day morning (Happy Mother's Day to my mom, my step-mom and my beautiful wife, btw) we sit in the Critical Care Unit of Kosiar Children's Hospital in Louisville. Not where I had expected to be.
We've been here since Friday, after a CT scan ordered by our incredible pediatrician showed a mass on Harper's kidney. Further reads have shown several other masses in her liver and lungs as well. On top of that, her Blood Pressure has been elevated since we arrived (likely because of her kidney tumor) and was rising out of control. After some intravenous meds, we ended in in the Critical Care Unit.
I never imagined we would be here. Our kids are so healthy. They are active, and Harper is especially spunky. It's such a shock to see her here, quiet.
At this point, we have no definitive diagnosis. A biopsy that will occur (hopefully) tomorrow should shed some light on what we're dealing with and what we have in front of us.
I'm not ashamed to say it - I'm scared. We're surrounded by incredibly talented doctors and nurses, family coming and calling from everywhere, friends clambering to get in to visit - but I'm still scared. This is something I can't fix. I feel powerless. My beautiful daughter's life is in danger.
I've joked for years that we had 3 kids so we had spares. That comment feels so heartless now. Before they were here, I couldn't imagine life with kids. Now that they're here, I can't imagine a happy life without them.
Harper and I have had our moments. We're both a bit hard-headed. But she is one of the primary lights in my life. I would do anything to help her. Would give anything to save her.
There are so many unknowns and nothing to do, at this point but to pray and wait. And we're doing plenty of both.
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