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.
Wednesday, June 27, 2012
Coming into turn 4
So, my period of mourning over the sad fate of my Maui Jims is done. Still sad, but I guess it's time to update here on how our trip is finishing out.
So, the biggest thing to say about Chincoteaque is that I was not sad to see it in the rear view mirror. After our donation of blood there, I was glad to be back on the road, headed towards Williamsburg.
The crossing of the Chesapeake Bridge-Tunnel was pretty uneventful. Excepting for very skinny lanes in the tunnels (there were two tunnels) and having to turn the propane off (resulting in less than frozen popsicles in the freezer) the crossing was easy. No traffic to speak of there. The idea of the bridge-tunnel is pretty cool, and made for some great views of the bay. Normal car toll is less, but our rig cost $20 to cross.
The roads through the Norfolk area were pretty rough. We were bouncing around from all the dips and bumps and Melissa was pretty freaked. It was so rough, in fact, that just a few miles from our campground near Williamsburg we were flagged down by a passing pickup, and told to stop and check our rear. Turns out we were inches from losing the bikes. The bouncing had knocked them loose. Lesson? I need to be more diligent in making sure the bikes are loaded and tied down well. We moved one bike to the back of the truck, tied down the rest, and were back on the road. Re-entering I-64 there was interesting, as traffic was heavier and it was a downhill grade. But, we finally caught a small break, and a few cars moved over for us as we merged in.
Turned out the KOA in Williamsburg had a Jumping Pillow, just like here in Niagara. I didn't jump this time, but Melissa did!
What was very different at Williamsburg from Niagara is that in Niagara, the spots were flat. The spot in Williamsburg was anything but. Not sure what the "grade" was, but it was steeper than we'd seen anywhere else. In fact, we ended up using all of our leveling blocks just to get the tongue high enough. With no leveling blocks left (and none for sale in the camp store) we ended up using stacked firewood under the jacks (our neighbor gave us the idea, as they'd done the same thing), and it STILL wasn't completely level. But, it was good enough.
There was a movie showing that night at the campground (Over The Hedge) and the campground had a nice outdoor theater, with stadium style seating (wooden benches), and a huge blow-up screen. All enjoyed it, and bedtime was quiet.
The next day, we ventured to Colonial Williamsburg where, since I had purchased tickets from the KOA, and they didn't ask the kids ages, I overpaid and paid for Fin when she should have been free. Next time, Melissa handles the tickets.
Williamsburg was neat, though it was quite warm. There were less "characters" roving about than we had expected. We had lunch at a tavern, and the food was good. Cadence and Finley had fried chicken strips and Harper had fried shrimp. Melissa had a roasted vegetable stuffed ravioli, and I had a chicken pot pie.
After a visit to the Apothecary, a tour of the Capital building, and the Gaol (thats how they spell jail), a storm hit. A big one. Things were blowing all over the place, branches were breaking out of trees, and Harper was screaming. So, of course, instead of seeking shelter, we walk through all that towards the visitors center where we parked the truck. We were soaked. Power was out at the visitors center (so couldn't buy postcards) and we had left the windows cracked (which we were wet from the rain anyways).
When we got back to the camper, luckily everything was ok. We were fearing there might be damage, especially to the awning, which we had left extended. Save a few limbs on the ground and no power at the campground for a couple hours, everything was fine.
That night we got to know the family in the spot next to us. They were from just outside NYC. They had a couple of kids similar in age to ours, so they got along great, and we sat around the fire and talked until after 11. They were nice and shared their beer. :)
The next day we headed towards The Natural Bridge in VA. This time, our lack of planning didn't work out as expected. We had made it so far through the trip without having any issue with campground availability, even without making any advance reservations. But, the KAO at The Natural Bridge didn't have any availability. So, when we stopped at a rest area, we looked up alternative campgrounds. Our friends from NY had said they were headed to a Jellystone in PA, so we found one nearby Natural Bridge and they had room. Turns out it also has a small water park, with a regular pool, a splash park and even water slides. They also have a jumping pillow and a mini-golf course. So, we spent the next day playing at the campground. Never did actually see the natural bridge, though we did visit the gift shop.
Tomorrow, we'll be heading towards Milford. Our journey will be just about over.
So, the biggest thing to say about Chincoteaque is that I was not sad to see it in the rear view mirror. After our donation of blood there, I was glad to be back on the road, headed towards Williamsburg.
The crossing of the Chesapeake Bridge-Tunnel was pretty uneventful. Excepting for very skinny lanes in the tunnels (there were two tunnels) and having to turn the propane off (resulting in less than frozen popsicles in the freezer) the crossing was easy. No traffic to speak of there. The idea of the bridge-tunnel is pretty cool, and made for some great views of the bay. Normal car toll is less, but our rig cost $20 to cross.
The roads through the Norfolk area were pretty rough. We were bouncing around from all the dips and bumps and Melissa was pretty freaked. It was so rough, in fact, that just a few miles from our campground near Williamsburg we were flagged down by a passing pickup, and told to stop and check our rear. Turns out we were inches from losing the bikes. The bouncing had knocked them loose. Lesson? I need to be more diligent in making sure the bikes are loaded and tied down well. We moved one bike to the back of the truck, tied down the rest, and were back on the road. Re-entering I-64 there was interesting, as traffic was heavier and it was a downhill grade. But, we finally caught a small break, and a few cars moved over for us as we merged in.
Turned out the KOA in Williamsburg had a Jumping Pillow, just like here in Niagara. I didn't jump this time, but Melissa did!
What was very different at Williamsburg from Niagara is that in Niagara, the spots were flat. The spot in Williamsburg was anything but. Not sure what the "grade" was, but it was steeper than we'd seen anywhere else. In fact, we ended up using all of our leveling blocks just to get the tongue high enough. With no leveling blocks left (and none for sale in the camp store) we ended up using stacked firewood under the jacks (our neighbor gave us the idea, as they'd done the same thing), and it STILL wasn't completely level. But, it was good enough.
There was a movie showing that night at the campground (Over The Hedge) and the campground had a nice outdoor theater, with stadium style seating (wooden benches), and a huge blow-up screen. All enjoyed it, and bedtime was quiet.
The next day, we ventured to Colonial Williamsburg where, since I had purchased tickets from the KOA, and they didn't ask the kids ages, I overpaid and paid for Fin when she should have been free. Next time, Melissa handles the tickets.
Williamsburg was neat, though it was quite warm. There were less "characters" roving about than we had expected. We had lunch at a tavern, and the food was good. Cadence and Finley had fried chicken strips and Harper had fried shrimp. Melissa had a roasted vegetable stuffed ravioli, and I had a chicken pot pie.
After a visit to the Apothecary, a tour of the Capital building, and the Gaol (thats how they spell jail), a storm hit. A big one. Things were blowing all over the place, branches were breaking out of trees, and Harper was screaming. So, of course, instead of seeking shelter, we walk through all that towards the visitors center where we parked the truck. We were soaked. Power was out at the visitors center (so couldn't buy postcards) and we had left the windows cracked (which we were wet from the rain anyways).
When we got back to the camper, luckily everything was ok. We were fearing there might be damage, especially to the awning, which we had left extended. Save a few limbs on the ground and no power at the campground for a couple hours, everything was fine.
That night we got to know the family in the spot next to us. They were from just outside NYC. They had a couple of kids similar in age to ours, so they got along great, and we sat around the fire and talked until after 11. They were nice and shared their beer. :)
The next day we headed towards The Natural Bridge in VA. This time, our lack of planning didn't work out as expected. We had made it so far through the trip without having any issue with campground availability, even without making any advance reservations. But, the KAO at The Natural Bridge didn't have any availability. So, when we stopped at a rest area, we looked up alternative campgrounds. Our friends from NY had said they were headed to a Jellystone in PA, so we found one nearby Natural Bridge and they had room. Turns out it also has a small water park, with a regular pool, a splash park and even water slides. They also have a jumping pillow and a mini-golf course. So, we spent the next day playing at the campground. Never did actually see the natural bridge, though we did visit the gift shop.
Tomorrow, we'll be heading towards Milford. Our journey will be just about over.
Monday, June 25, 2012
Tragedy
A beautiful morning. Coffee. Cereal. One more trip to the beach before packing up and heading to the next stop.
A bike ride through carnivorous mosquito-infested wildlife refuge. A kamikaze attack on the mosquito strong-hold (another story for another time).
A different beach. Secluded. No vehicle access. Almost deserted.
Waves. Bigger waves. Girls riding the waves in their life vests. I'm standing with them in the water. A good time.
Go deeper. Marine life at my feet. A rogue wave. (ok, maybe not a rogue wave, but bigger and caught me off guard)
I'm under. I'm up. Fun! Sure is bright out though. Shock. Realization.
Search in the water. Scrape the bottom. Another wave. Another.
They're gone. Search the surf. No use. Gone. Gone forever.
..........
Above is a description of how we lost a close family friend - my Maui Jim sunglasses. The victim of a ill-fated beach experience. May they rest in peace.
Saturday, June 23, 2012
The Birds
Have you ever seen the Hitchcock film The Birds? Remember the iconic scene that may, occasionally, visit you in your dreams, the sky black with wings? Well, that's Chincoteague.
Alright. So, it's not birds, per-se. But, the Mosquitos at Chincoteaugue are just about as thick, and can, I believe, strip your bones just like a large flock of carnivorous birds.
We started our day at the beach. It was a beautiful morning, and we got to the beach early. And fortunately Harper didn't go to the restroom before we left. I say fortunately, because as Melissa walked her to the restroom, they came upon a turtle laying eggs. Melissa came back and got the other two (and she let me tag along). We ended up seeing 3 different turtles laying eggs, covering them, and then scurrying back to the water. The stop at Chincoteague was worth it right there.
After the beach, we got some lunch (just sandwiches at the camper) and then headed out biking. We decided to bike a trail in the National Refuge Area. This was apparently a poor choice.
Not a poor choice because of the trail we chose, which was actually a nice, paved path, and had an overlook to the wild pony area. But, do you remember The Birds? Well, we will always remember The Mosquitos.
Imagine biblical swarms of locust, but Mosquitos. They. Were. Everywhere. They chased us. I think they may have even barked. We could have leashed a few.
After escaping with a few drops of blood left in our bodies, we got some dinner. Last night was Don's Seafood. Tonight we tried Bill's. It was a nicer restaurant, and the girls were pretty well behaved. They even tried oysters (fried and Rockefeller) and liked them!
We ended our evening with the first campfire of our trip.
Someone gave us the wood, so I felt obligated. Unfortunately, the Mosquitos get even more aggressive once the sun goes down.
Alright. So, it's not birds, per-se. But, the Mosquitos at Chincoteaugue are just about as thick, and can, I believe, strip your bones just like a large flock of carnivorous birds.
We started our day at the beach. It was a beautiful morning, and we got to the beach early. And fortunately Harper didn't go to the restroom before we left. I say fortunately, because as Melissa walked her to the restroom, they came upon a turtle laying eggs. Melissa came back and got the other two (and she let me tag along). We ended up seeing 3 different turtles laying eggs, covering them, and then scurrying back to the water. The stop at Chincoteague was worth it right there.
After the beach, we got some lunch (just sandwiches at the camper) and then headed out biking. We decided to bike a trail in the National Refuge Area. This was apparently a poor choice.
Not a poor choice because of the trail we chose, which was actually a nice, paved path, and had an overlook to the wild pony area. But, do you remember The Birds? Well, we will always remember The Mosquitos.
Imagine biblical swarms of locust, but Mosquitos. They. Were. Everywhere. They chased us. I think they may have even barked. We could have leashed a few.
After escaping with a few drops of blood left in our bodies, we got some dinner. Last night was Don's Seafood. Tonight we tried Bill's. It was a nicer restaurant, and the girls were pretty well behaved. They even tried oysters (fried and Rockefeller) and liked them!
We ended our evening with the first campfire of our trip.
Someone gave us the wood, so I felt obligated. Unfortunately, the Mosquitos get even more aggressive once the sun goes down.
Friday, June 22, 2012
Trying Something New
One of the big reasons for spending so much in diesel this summer for this crazy long summer adventurcation is to let our girls experience as many new, memorable experiences as possible. Niagara Falls. Hershey Park. Gettysburg. (so far)
Today we arrived in Chincoteague, VA. We expected the drive from Gettysburg to be brutal, since we were traveling through Baltimore, but it turned out to be pretty tame.
We checked into our campsite, which turned out to be a pretty nice one:
We then headed for a local seafood restaurant, Don's Seafood. Here's where the "experience" comes in. All three girls selected cab legs for dinner. Fortunately they had a kids portion (saved $). Now, I don't think any of them had had crab legs before, so this was new.
I was expecting at least one of them to say "yuck" once dinner was delivered, but I was pleasantly surprised. They liked them, and each cleaned their plate.
Now, we could have gotten crab legs at a Red Lobster anywhere, but they got to try them in a different town at a local restaurant. A neat experience (and they were pretty well behaved!).
We finished the day with another experience... We went out and scoped out the beach for tomorrow. Harper experienced the joy of sand in your shorts where it doesn't belong... Couldn't have happened to a better kid... :)
Today we arrived in Chincoteague, VA. We expected the drive from Gettysburg to be brutal, since we were traveling through Baltimore, but it turned out to be pretty tame.
We checked into our campsite, which turned out to be a pretty nice one:
We then headed for a local seafood restaurant, Don's Seafood. Here's where the "experience" comes in. All three girls selected cab legs for dinner. Fortunately they had a kids portion (saved $). Now, I don't think any of them had had crab legs before, so this was new.
I was expecting at least one of them to say "yuck" once dinner was delivered, but I was pleasantly surprised. They liked them, and each cleaned their plate.
Now, we could have gotten crab legs at a Red Lobster anywhere, but they got to try them in a different town at a local restaurant. A neat experience (and they were pretty well behaved!).
We finished the day with another experience... We went out and scoped out the beach for tomorrow. Harper experienced the joy of sand in your shorts where it doesn't belong... Couldn't have happened to a better kid... :)
Thursday, June 21, 2012
2 Day Update
Hershey having thoroughly exhausted the Wehneman clan yesterday, I failed to provide an update as to our adventures. So, this will be a double header.
Hershey Park was much better than I had expected. The park appears to be very well maintained, and the ride layout is excellent. Specifically, the small kid rides and big kid rides are intermixed, so that little ones (like Finley) have something to do nearby as their bigger siblings ride their rides.
Also, the rides are coded for very easy identification of what height is required to ride. And all the height groupings are named after Hershey candy (duh, of course). Cadence and Harper (Harper just barely) were Hershey Milk Chocolate Bars. Finley was a Hershey Kiss. Other groupings included Hershey Mini's (smaller than Fin), Reese's Peanut Butter Cups, Twizzlers and Jolly Ranchers.
A little surprising to me, the roller coasters were the favorite all around. Harper seemed to prefer the wooden ones, while Cadence preferred steel. Finley liked the one she was big enough to ride (we rode it 5 times I think).
I also got Cadence to go down a big waterside, The Whirlwind. We went down in a two-person tube.
We wrapped up the day with a visit to Hershey's Chocolate World (inside thankfully) which is a huge shrine to chocolate. I believe I gained 10 pounds and contracted diabetes on the tour. But, we did do something pretty cool. We did the "Create Your Own Candy Bar" experience, where we each designed and watched them make (via automated equipment) our own candy bar. The girls thought it was great.
Exhausted, we returned to the campground for a quick dip in the pool, followed by bed.
Melissa awoke this morning with a very sore and tight neck. Can't tell for sure if she hurt it at the park or just slept on it wrong. Probably a combination of both. It bothered her all day, and if I had to guess, will continue tomorrow.
We decided to alter our fairly loose plans, and instead of heading straight for Virginia, we went SW instead towards Gettysburg. I'd never been, and others told me they've enjoyed it.
It's actually a pretty short drive, so we arrived mid-day at the Gettysburg National Park visitors center. After checking out our options, we declined Harper's begging to go on a 3.5hr bus tour (costing us $80) and instead chose to purchase a 3-disc Auto Tour set which takes you on a tour of the battlefield. Likely just as long as the bus tour, but at our own pace and in our own vehicle.
We then figured out where we were going to stay the night. I made 3 calls to the campground which was our first pick, but kept getting voicemail. So, onto our next choice, who happened to have availability. We showed up 10 minutes later, picked out our spot (the one with trees, so we were NOT out in the open sun), and set up shop. I wisely shut my hand in the door of the truck as we began to unpack. I had to be hurt so Melissa isn't the only one getting sympathy.
After a quick lunch, it was off to the pool, where the girls swam, Harper getting back to actually swimming, which she can do, but often lacks the confidence. Finley was showing all sorts of confidence in her flotation device, falling backwards into the pool from the side.
After the pool, we headed out on our Auto Tour. First, Harper was crazed and non-cooperative. But she settled down when we reached a spot where a film crew was using a flying camera - it had a series of helicopter-like rotors on top of it and was radio controlled. It was pretty awesome, and I'm sorry I didn't get a picture of it.
Next Finley lost her mind at Little Round Top, where she refused to stay with us and kept running off.
Finally, as we neared the end, Cadence's bladder invaded her mind, and we finally quit, just 1 stop from the cemetery and the conclusion of the tour. If we can, we'll try to finish it tomorrow morning before heading out.
Not 10 minutes after returning to the camper, everyone is in bed, quiet and/or asleep. I'm about to join them.
Tomorrow, we embark on a challenging trip to the coast of Virginia to get our beach on. I'm (naively) hoping for sleeping in the truck. I'm (wisely I think) going to seek out a route that avoids Baltimore.
Hershey Park was much better than I had expected. The park appears to be very well maintained, and the ride layout is excellent. Specifically, the small kid rides and big kid rides are intermixed, so that little ones (like Finley) have something to do nearby as their bigger siblings ride their rides.
Also, the rides are coded for very easy identification of what height is required to ride. And all the height groupings are named after Hershey candy (duh, of course). Cadence and Harper (Harper just barely) were Hershey Milk Chocolate Bars. Finley was a Hershey Kiss. Other groupings included Hershey Mini's (smaller than Fin), Reese's Peanut Butter Cups, Twizzlers and Jolly Ranchers.
A little surprising to me, the roller coasters were the favorite all around. Harper seemed to prefer the wooden ones, while Cadence preferred steel. Finley liked the one she was big enough to ride (we rode it 5 times I think).
I also got Cadence to go down a big waterside, The Whirlwind. We went down in a two-person tube.
We wrapped up the day with a visit to Hershey's Chocolate World (inside thankfully) which is a huge shrine to chocolate. I believe I gained 10 pounds and contracted diabetes on the tour. But, we did do something pretty cool. We did the "Create Your Own Candy Bar" experience, where we each designed and watched them make (via automated equipment) our own candy bar. The girls thought it was great.
Exhausted, we returned to the campground for a quick dip in the pool, followed by bed.
Melissa awoke this morning with a very sore and tight neck. Can't tell for sure if she hurt it at the park or just slept on it wrong. Probably a combination of both. It bothered her all day, and if I had to guess, will continue tomorrow.
We decided to alter our fairly loose plans, and instead of heading straight for Virginia, we went SW instead towards Gettysburg. I'd never been, and others told me they've enjoyed it.
It's actually a pretty short drive, so we arrived mid-day at the Gettysburg National Park visitors center. After checking out our options, we declined Harper's begging to go on a 3.5hr bus tour (costing us $80) and instead chose to purchase a 3-disc Auto Tour set which takes you on a tour of the battlefield. Likely just as long as the bus tour, but at our own pace and in our own vehicle.
We then figured out where we were going to stay the night. I made 3 calls to the campground which was our first pick, but kept getting voicemail. So, onto our next choice, who happened to have availability. We showed up 10 minutes later, picked out our spot (the one with trees, so we were NOT out in the open sun), and set up shop. I wisely shut my hand in the door of the truck as we began to unpack. I had to be hurt so Melissa isn't the only one getting sympathy.
After a quick lunch, it was off to the pool, where the girls swam, Harper getting back to actually swimming, which she can do, but often lacks the confidence. Finley was showing all sorts of confidence in her flotation device, falling backwards into the pool from the side.
After the pool, we headed out on our Auto Tour. First, Harper was crazed and non-cooperative. But she settled down when we reached a spot where a film crew was using a flying camera - it had a series of helicopter-like rotors on top of it and was radio controlled. It was pretty awesome, and I'm sorry I didn't get a picture of it.
Next Finley lost her mind at Little Round Top, where she refused to stay with us and kept running off.
Finally, as we neared the end, Cadence's bladder invaded her mind, and we finally quit, just 1 stop from the cemetery and the conclusion of the tour. If we can, we'll try to finish it tomorrow morning before heading out.
Not 10 minutes after returning to the camper, everyone is in bed, quiet and/or asleep. I'm about to join them.
Tomorrow, we embark on a challenging trip to the coast of Virginia to get our beach on. I'm (naively) hoping for sleeping in the truck. I'm (wisely I think) going to seek out a route that avoids Baltimore.
Wednesday, June 20, 2012
Norfolk Southern is Following Us
At home, there is an active Norfolk Southern line that runs right down through Georgetown. I can honestly say you get used to it - the sounds doesn't bother me (or anyone else in the family) anymore. In fact, Finley still yells "Thomas" when she sees one.
Right next to the campground here at Hershey, there's an active train line. Guess who??? Norfolk Southern of course!
It appears we're being followed.
Today we're off to Hershey Park. We'll be waking the girls up shortly.
Pray for me... :)
Right next to the campground here at Hershey, there's an active train line. Guess who??? Norfolk Southern of course!
It appears we're being followed.
Today we're off to Hershey Park. We'll be waking the girls up shortly.
Pray for me... :)
Tuesday, June 19, 2012
Long Drive = Short Post
Drove from Niagara to Hershey today. Girls did quite well, though there was less napping than I would have preferred.
Biggest memory for today? Pennsylvania has a series of road sign encouraging good driving. They are bright yellow and say things like "Stay Alert." We laughed about them most of the way, because if you go more than 2 or 3 miles, you'll see them.
Tomorrow is Hershey Park. Wish us luck!
Biggest memory for today? Pennsylvania has a series of road sign encouraging good driving. They are bright yellow and say things like "Stay Alert." We laughed about them most of the way, because if you go more than 2 or 3 miles, you'll see them.
Tomorrow is Hershey Park. Wish us luck!
Niagara Take 2
Our second day in Niagara Falls started off pretty relaxing. After a night of heavy rain (could use some of that at home) we took the bikes off the rack and took a riding tour of the campground.
We came across a Jumping Pillow. I recall seeing these things online or on TV, but I'd never seen one in person or tried one. As I posted mid-day here, this thing was pretty cool. Seems like it would be a lot safer than a trampoline. I know everyone enjoyed it - even me as evidenced here.
After that workout (stiff today due to it, I think) we headed for some lunch. I enjoy local places, versus always frequenting the chain restaurants you know. We located a little sub shop called John's Pizza & Subs. The girls were a bit worked up, so we sat outside. Harper got wings (of course) and the stain on her shirt for the rest of the day attested to her approval.
While we're eating out a lot, we are still keeping the camper stocked with food for when we need it (snacks, meals on the road, etc.) which necessitated a stop at a local supermarket (the only one on Grand Island, apparently). Our errands done, we stopped quickly at the camper and then headed back to the Falls.
We began The Falls v2.0 at The Aquarium of Niagara. This was a tiny little aquarium (probably the smallest I've ever been to) but it was very nice. Well kept, and the we got there at an apparent lull, as we had no issue getting to and seeing all the exhibits. Things crowded up around 2:30 when the sea lion show started, which lasted about 10 minutes - but it was the quietest 10 minutes for Harper for the whole trip - she was amazed and loved it.
Upon exiting, we logged a Did Not Find geocache (too many muggles). For more info on THAT see one of my first blog posts here. After conceding defeat, we headed for Rainbow bridge.
So, traveling from New York into Canada at Niagara Falls is not what you would necessarily calls an "international" experience, but we DID cross an international border AND we got our passports stamped. So, we'll take it for what it's worth, and Cadence and Harper will be able to claim they were in Canada over the summer.
Several things we learned in Niagara Falls on the Canadian plan:
1. Parking at Niagara Park is VERY expensive. We paid $18 to park, versus $5 we saw later...
2. Clifton Hill (where a lot of the more commercial, touristy, Gatlinburg-ish stuff is) is a LONG walk from Niagara Park. And after paying $18 for parking, we weren't in a hurry to un-park. (we never made it to Clifton Hill on foot - btw)
3. IHOP at the Sheraton closes at 3pm on weekdays. This is, of course, after talking Hungry Harper (she's a different person when she's hungry) into pancakes. Uggh. We ate at an Italian place in the Sheraton. Why - because it was right there, and it was OPEN.
4. There is a geocache located very close to the top of the incline railway (which we rode) which got us our first international geocache!!! (here's a clue for those who geocache and might be there sometime)
Our Canadian adventure coming to an end, we headed back towards Rainbow bridge. The signage isn't all that good to get to the bridge, but due to that we DID get to drive up Clifton Hill, which showed Melissa I was NOT crazy, and there was a lot of stuff there, if we had just been able to keep going and get there...
Crossing back into the USA, we all (individually) recounted our country of citizenship to the border agent, told him 4 times we lived in Indiana, etc. Feeling safe and protected from dangerous Canadians, we headed back to the camper.
We came across a Jumping Pillow. I recall seeing these things online or on TV, but I'd never seen one in person or tried one. As I posted mid-day here, this thing was pretty cool. Seems like it would be a lot safer than a trampoline. I know everyone enjoyed it - even me as evidenced here.
After that workout (stiff today due to it, I think) we headed for some lunch. I enjoy local places, versus always frequenting the chain restaurants you know. We located a little sub shop called John's Pizza & Subs. The girls were a bit worked up, so we sat outside. Harper got wings (of course) and the stain on her shirt for the rest of the day attested to her approval.
While we're eating out a lot, we are still keeping the camper stocked with food for when we need it (snacks, meals on the road, etc.) which necessitated a stop at a local supermarket (the only one on Grand Island, apparently). Our errands done, we stopped quickly at the camper and then headed back to the Falls.
We began The Falls v2.0 at The Aquarium of Niagara. This was a tiny little aquarium (probably the smallest I've ever been to) but it was very nice. Well kept, and the we got there at an apparent lull, as we had no issue getting to and seeing all the exhibits. Things crowded up around 2:30 when the sea lion show started, which lasted about 10 minutes - but it was the quietest 10 minutes for Harper for the whole trip - she was amazed and loved it.
Upon exiting, we logged a Did Not Find geocache (too many muggles). For more info on THAT see one of my first blog posts here. After conceding defeat, we headed for Rainbow bridge.
So, traveling from New York into Canada at Niagara Falls is not what you would necessarily calls an "international" experience, but we DID cross an international border AND we got our passports stamped. So, we'll take it for what it's worth, and Cadence and Harper will be able to claim they were in Canada over the summer.
Several things we learned in Niagara Falls on the Canadian plan:
1. Parking at Niagara Park is VERY expensive. We paid $18 to park, versus $5 we saw later...
2. Clifton Hill (where a lot of the more commercial, touristy, Gatlinburg-ish stuff is) is a LONG walk from Niagara Park. And after paying $18 for parking, we weren't in a hurry to un-park. (we never made it to Clifton Hill on foot - btw)
3. IHOP at the Sheraton closes at 3pm on weekdays. This is, of course, after talking Hungry Harper (she's a different person when she's hungry) into pancakes. Uggh. We ate at an Italian place in the Sheraton. Why - because it was right there, and it was OPEN.
4. There is a geocache located very close to the top of the incline railway (which we rode) which got us our first international geocache!!! (here's a clue for those who geocache and might be there sometime)
Our Canadian adventure coming to an end, we headed back towards Rainbow bridge. The signage isn't all that good to get to the bridge, but due to that we DID get to drive up Clifton Hill, which showed Melissa I was NOT crazy, and there was a lot of stuff there, if we had just been able to keep going and get there...
Crossing back into the USA, we all (individually) recounted our country of citizenship to the border agent, told him 4 times we lived in Indiana, etc. Feeling safe and protected from dangerous Canadians, we headed back to the camper.
Monday, June 18, 2012
Sunday, June 17, 2012
A Physio-Electric Power Plant
After a day at Niagara Falls, it has become apparent to me that, while electricity is generated at Niagara Falls, it is not hydro-electric power, but physio-electric power. While the amount of energy contained within flowing water is substantial, the amount of energy released by tourists in the area is of a higher level of magnitude. I believe they extract it from you as you"tour."
I'm beat.
We began the day at the campground in Pennsylvania, on Lake Erie. Nice spot, really, and for $43 a night for a lake-front full hook up, a very good deal. I was up at the crack of dawn, and it took a couple hours for the rest of the brood to burrow out from under their blankets.
Coffee in our $9.24 Target coffee maker was passable. Not as good as Alan's at the farm, but better than the percolating pots we used to use camping. I love electrified campsites - if for no other reason than to have decent coffee in the morning.
We did a quick visit to the playground (3 swings and a slide), and then started to pack up to head out. That weather forecast that predicted dry weather? They were apparently smoking something of the fungicide family. It rained on us the whole time we were putting things away.
Finally on the road around 10:30, and we made decent time to Grand Island. We're staying at the Grand Island, NY KOA. We didn't get a premium spot, though. Next time I'm thinking we splurge. We're parked directly next to someone, and while it's ok, it would be nicer to have more room.
We set the camper in park (put down the jacks, put in the tire chock, hooked up water, electric and sewer) and then went to get some lunch. Harper needed it. You can always tell when Harper is hungry - because she becomes even MORE unreasonable.
We found a hot-dog shop. Now, I'm not the biggest fan of hot dogs, but we were just looking for something quick, relatively inexpensive, and nearby. Name was Theodore's Red Hots. It was very good. I had a foot long with chili, cheese and pickles. Finley had fries.
From there, we headed to Niagara Falls, and the extraction of energy began. It took some time to find a place to park. The nearby parking was full, so we ended up a few blocks away. Then we fought our way to where I THOUGHT we could buy Maid of the Mist tickets, only to find out that THAT spot only sells package deals at $70 a person. No thanks.
Found the Maid of the Mist ticket counter, and we were in luck. The ride on the Maid of the Mist was a blast. The girls loved it, and were pretty soaked, despite the ponchos. We took lots of pics, but they are on Melissa's camera. The iPad (thankfully) stayed dry in Melissa's purse under her poncho.
After the Maid, we did the "crows nest" that is right nearby there. You disembark from the Maid (USA side) and then walk towards the American Falls. You can then climb concrete steps into the mist. Well, let's call it a drenching.
So, now we're twice wet, and we started towards the Cave of the Winds area. Harper really wanted to go. We walked, and walked, and walked, and then we rested, before we walked, and walked some more. Finally arriving, we doled out nearly as much for the Cave as we did for the Maid.
One thing I will say for the Cave. You get some pretty nice shower shoes. One thing I can't say for the Cave - It's a Cave. Because it's not. It's a bunch of decks. Granted, you get pretty wet (with "free" water, by the way), but there is no cave. And this is not explained until a sign at the END of the walk. Apparently the cave collapsed in 1920. Hungry Harper (we're hours since our last meal by now) is not pleased. And since she can't see the cave (that no longer exists) she wants to go through AGAIN.
The promise of food finally draws her away from the (non)Cave (which has a TON of baby seagulls nesting on that rocky hillside, BTW) and we walk some more. TGI Fridays is seen in the distance (notice distance - not close) and we're off walking again.
Dinner was good. Children were crazy. Beer was needed and was ingested.
Back to the camper. Sleep is near (I hope). Another day down. And you can thank me for the electricity you are expending reading this post.
I'm beat.
We began the day at the campground in Pennsylvania, on Lake Erie. Nice spot, really, and for $43 a night for a lake-front full hook up, a very good deal. I was up at the crack of dawn, and it took a couple hours for the rest of the brood to burrow out from under their blankets.
Coffee in our $9.24 Target coffee maker was passable. Not as good as Alan's at the farm, but better than the percolating pots we used to use camping. I love electrified campsites - if for no other reason than to have decent coffee in the morning.
We did a quick visit to the playground (3 swings and a slide), and then started to pack up to head out. That weather forecast that predicted dry weather? They were apparently smoking something of the fungicide family. It rained on us the whole time we were putting things away.
Finally on the road around 10:30, and we made decent time to Grand Island. We're staying at the Grand Island, NY KOA. We didn't get a premium spot, though. Next time I'm thinking we splurge. We're parked directly next to someone, and while it's ok, it would be nicer to have more room.
We set the camper in park (put down the jacks, put in the tire chock, hooked up water, electric and sewer) and then went to get some lunch. Harper needed it. You can always tell when Harper is hungry - because she becomes even MORE unreasonable.
We found a hot-dog shop. Now, I'm not the biggest fan of hot dogs, but we were just looking for something quick, relatively inexpensive, and nearby. Name was Theodore's Red Hots. It was very good. I had a foot long with chili, cheese and pickles. Finley had fries.
From there, we headed to Niagara Falls, and the extraction of energy began. It took some time to find a place to park. The nearby parking was full, so we ended up a few blocks away. Then we fought our way to where I THOUGHT we could buy Maid of the Mist tickets, only to find out that THAT spot only sells package deals at $70 a person. No thanks.
Found the Maid of the Mist ticket counter, and we were in luck. The ride on the Maid of the Mist was a blast. The girls loved it, and were pretty soaked, despite the ponchos. We took lots of pics, but they are on Melissa's camera. The iPad (thankfully) stayed dry in Melissa's purse under her poncho.
After the Maid, we did the "crows nest" that is right nearby there. You disembark from the Maid (USA side) and then walk towards the American Falls. You can then climb concrete steps into the mist. Well, let's call it a drenching.
So, now we're twice wet, and we started towards the Cave of the Winds area. Harper really wanted to go. We walked, and walked, and walked, and then we rested, before we walked, and walked some more. Finally arriving, we doled out nearly as much for the Cave as we did for the Maid.
One thing I will say for the Cave. You get some pretty nice shower shoes. One thing I can't say for the Cave - It's a Cave. Because it's not. It's a bunch of decks. Granted, you get pretty wet (with "free" water, by the way), but there is no cave. And this is not explained until a sign at the END of the walk. Apparently the cave collapsed in 1920. Hungry Harper (we're hours since our last meal by now) is not pleased. And since she can't see the cave (that no longer exists) she wants to go through AGAIN.
The promise of food finally draws her away from the (non)Cave (which has a TON of baby seagulls nesting on that rocky hillside, BTW) and we walk some more. TGI Fridays is seen in the distance (notice distance - not close) and we're off walking again.
Dinner was good. Children were crazy. Beer was needed and was ingested.
Back to the camper. Sleep is near (I hope). Another day down. And you can thank me for the electricity you are expending reading this post.
Who needs a wake-up call?
When I was 12, I could sleep until noon. Or 1pm for that matter. Seems that has changed.
2 days into vacation - and my body/mind doesn't seem to know it yet. Between 5:30 and 6:00 my mind gets up. Day of the week, status of work/vacation etc. doesn't seem to phase it.
Perhaps it's age. Perhaps between the time I was 12 and now something physiologically changed that no longer allows me to sleep much past 6 (unless I was up until well after midnight the night before). Or, perhaps the realities of life weigh heavier on my mind (conscious and sub-conscious) than I realized.
While traveling cross country with 3 kids in a rig 50ft long doesn't sound relaxing to most, it IS my hope that on this trip I can find some time to relax.
Perhaps that time will be 6am.
2 days into vacation - and my body/mind doesn't seem to know it yet. Between 5:30 and 6:00 my mind gets up. Day of the week, status of work/vacation etc. doesn't seem to phase it.
Perhaps it's age. Perhaps between the time I was 12 and now something physiologically changed that no longer allows me to sleep much past 6 (unless I was up until well after midnight the night before). Or, perhaps the realities of life weigh heavier on my mind (conscious and sub-conscious) than I realized.
While traveling cross country with 3 kids in a rig 50ft long doesn't sound relaxing to most, it IS my hope that on this trip I can find some time to relax.
Perhaps that time will be 6am.
Saturday, June 16, 2012
Day 1 - Covington, Ohio to Erie, Pennsylvania
Surprisingly calm. That's the description of our first (and hopefully longest) day on the road. I hope all of our days go this smoothly.
We departed the farm at about 9:30am. Our dogs were sad to see us go. So was my uncle Alan, who will be watching the mutts during our extended adventure. While I'm sure Alan will miss us, I'm also pretty sure at least part of his emotions upon our departure were related to him having to deal with our animals...
We had planned to stop at a rest stop near Mansfield and make sandwiches for lunch. But as we approached, we saw a sign for Skyline. Knowing it was unlikely we would see another Skyline during our trip, we decided 4-ways was a better choice.
Now, most Skyline parking lots are not designed for big rigs, and my 50ft setup is pretty large. But, we did a drive-by and decided to chance it. In the end, we got our Skyline, and we left there staying on pavement the whole time.
Around 4 or so, we hit the Pennsylvania line. We stopped at the first rest stop, checked for geocaches, and none were listed close by. But, as we are learning, Cadence has an uncanny ability to find caches. In fact, as she walked toward the restrooms, she stopped and pulled a cache, apparently placed but not yet posted online, from a sign. We signed it (First to Find BEFORE even available!!!).
6 miles later we pulled off and headed towards a campground. Nice place actually. Without a reservation, we got a lakefront spot.
We checked in, setup, and headed for the "beach" which is more of a rocky shore. The girls got a good dose of Lake Erie water, without bathing suits, of course. Showers all around, and then movies. Thank goodness for TVs in our camper.
For 6+ hours in the truck on the road, it was a pretty good day. Tomorrow we'll check out of here and set off toward Niagara Falls.
We departed the farm at about 9:30am. Our dogs were sad to see us go. So was my uncle Alan, who will be watching the mutts during our extended adventure. While I'm sure Alan will miss us, I'm also pretty sure at least part of his emotions upon our departure were related to him having to deal with our animals...
We had planned to stop at a rest stop near Mansfield and make sandwiches for lunch. But as we approached, we saw a sign for Skyline. Knowing it was unlikely we would see another Skyline during our trip, we decided 4-ways was a better choice.
Now, most Skyline parking lots are not designed for big rigs, and my 50ft setup is pretty large. But, we did a drive-by and decided to chance it. In the end, we got our Skyline, and we left there staying on pavement the whole time.
Around 4 or so, we hit the Pennsylvania line. We stopped at the first rest stop, checked for geocaches, and none were listed close by. But, as we are learning, Cadence has an uncanny ability to find caches. In fact, as she walked toward the restrooms, she stopped and pulled a cache, apparently placed but not yet posted online, from a sign. We signed it (First to Find BEFORE even available!!!).
6 miles later we pulled off and headed towards a campground. Nice place actually. Without a reservation, we got a lakefront spot.
We checked in, setup, and headed for the "beach" which is more of a rocky shore. The girls got a good dose of Lake Erie water, without bathing suits, of course. Showers all around, and then movies. Thank goodness for TVs in our camper.
For 6+ hours in the truck on the road, it was a pretty good day. Tomorrow we'll check out of here and set off toward Niagara Falls.
Friday, June 15, 2012
Day 0.5
Started the day at a work function, which ended at approx. noon. Then, we were off. Re-packed the truck, waved goodbye to Milford and shot north for the farm, and our camper.
6 or so ours later, we're just about ready... for bed that is. Bikes are locked and loaded on the back.
Some food is in the fridge.
Clothes are put "away" (don't judge).
And, most importantly, the coffee maker is ready for the morning.
Tomorrow, we hook the wagon to the horses
and we'll be on the road. At least until someone has to pee.
6 or so ours later, we're just about ready... for bed that is. Bikes are locked and loaded on the back.
Some food is in the fridge.
Clothes are put "away" (don't judge).
And, most importantly, the coffee maker is ready for the morning.
Tomorrow, we hook the wagon to the horses
and we'll be on the road. At least until someone has to pee.
Thursday, June 14, 2012
Then, I Died
The vacation doesn't officially start until tomorrow afternoon, but this evening we drove from home to Cincinnati. We're staying with Melissa's parents for one night, with a work event in West Chester for me tomorrow, and then, we're off.
The drives on this "road trip" vacation could be very interesting in the cab of the truck, especially if Harper continues to tell her stories. Seems everything she tells a story (they were doing "dreams" at one point), it ends with "and then, I died."
Let's hope we all survive...
The drives on this "road trip" vacation could be very interesting in the cab of the truck, especially if Harper continues to tell her stories. Seems everything she tells a story (they were doing "dreams" at one point), it ends with "and then, I died."
Let's hope we all survive...
Wednesday, June 13, 2012
Let's get rotten luck out of the way
I'm hoping for good luck on our rather lengthy camping vacation. We don't need mechanical problems, overly hot, cold, or wet weather, poor navigation, road construction, etc... Of course it's inevitable that something will go wrong, but minor is better.
A few weeks ago, we finally bit the bullet and got Melissa some new tires. We'd put about 50k miles on her vehicle since we bought it at CarMax, and so her tires were pretty worn. There was slippage on wet roads and lots of squeaking on recently topped pavement. Finally one of them started to leak air - so we knew it was time.
It took me 3 stops to find a tire place with the right size (you wouldn't think that tires for a Ford Expedition would be hard to locate) - Sears didn't have them. Neither did Raben Tire. Finally found them at Ken Towery, and they only had 1 set (Cooper). Almost $1,000 later, I was headed home with 4 new tires and an alignment.
Today, flat tire. Come to find out there was a nail in the interior side wall of the passenger rear tire. And guess who DIDN'T buy the road hazard coverage for the new tires.... Uggh. Tire ruined - no plugging a hole in the side wall. So, another tire to buy...
Well, now we have road hazard on all of them, AND, instead of a buy 3, get the 4th free deal (which I DIDN'T get before) we are now sitting at a buy 5, get 4 tires deal. Plus, I've bought the road hazard (another $80).
Lets hope by buying the extra and insurance on those tires, I've satisfied our share of bad luck for awhile, and we can avoid any major issues on the road over the next 2.5 weeks. I guess we'll see.
A few weeks ago, we finally bit the bullet and got Melissa some new tires. We'd put about 50k miles on her vehicle since we bought it at CarMax, and so her tires were pretty worn. There was slippage on wet roads and lots of squeaking on recently topped pavement. Finally one of them started to leak air - so we knew it was time.
It took me 3 stops to find a tire place with the right size (you wouldn't think that tires for a Ford Expedition would be hard to locate) - Sears didn't have them. Neither did Raben Tire. Finally found them at Ken Towery, and they only had 1 set (Cooper). Almost $1,000 later, I was headed home with 4 new tires and an alignment.
Today, flat tire. Come to find out there was a nail in the interior side wall of the passenger rear tire. And guess who DIDN'T buy the road hazard coverage for the new tires.... Uggh. Tire ruined - no plugging a hole in the side wall. So, another tire to buy...
Well, now we have road hazard on all of them, AND, instead of a buy 3, get the 4th free deal (which I DIDN'T get before) we are now sitting at a buy 5, get 4 tires deal. Plus, I've bought the road hazard (another $80).
Lets hope by buying the extra and insurance on those tires, I've satisfied our share of bad luck for awhile, and we can avoid any major issues on the road over the next 2.5 weeks. I guess we'll see.
Sunday, June 10, 2012
4 Days and Counting
Our long awaited summer adventurcation will kick off in 4 short days. Much is already done and ready to go. But much is still to be done.
Today we've been discussing how much clothing to take. Its a foregone conclusion that we'll need to do laundry at some points, just a question of how much. The girls (especially Finley and Harper) tend to go through a lot of clothing if allowed. Now, we could take 2.5 weeks worth of clothing...
but I think we're looking at maybe a week's worth of clothes. Part of the reasoning is I'm not sure Melissa and I have much more than that (if we even have a week) in our wardrobes. Finley (being the youngest of three sisters) has what amounts to likely several months... With a week's worth we can stop and do laundry when convenient during each week. Smaller loads will be easier to deal with anyway.
Of course the most challenging thing I expect will be my patience with the girls while we're driving. The constant bickering, mixed with little girl screeches will be a true test for me personally. Distraction will be our number one weapon in that battle. Melissa has a list of games and activities she's been amassing... Let's hope they work.
Squirrel!!!
Today we've been discussing how much clothing to take. Its a foregone conclusion that we'll need to do laundry at some points, just a question of how much. The girls (especially Finley and Harper) tend to go through a lot of clothing if allowed. Now, we could take 2.5 weeks worth of clothing...
but I think we're looking at maybe a week's worth of clothes. Part of the reasoning is I'm not sure Melissa and I have much more than that (if we even have a week) in our wardrobes. Finley (being the youngest of three sisters) has what amounts to likely several months... With a week's worth we can stop and do laundry when convenient during each week. Smaller loads will be easier to deal with anyway.
Of course the most challenging thing I expect will be my patience with the girls while we're driving. The constant bickering, mixed with little girl screeches will be a true test for me personally. Distraction will be our number one weapon in that battle. Melissa has a list of games and activities she's been amassing... Let's hope they work.
Squirrel!!!
Saturday, June 9, 2012
A Summer Vacation Adventure
I haven't posted a blog post for quite some time. I could blame it on work... But really LIFE has gotten in the way.
In less than a week, our family will be embarking on what may prove to be an exhilarating or, alternatively, a disastrous experience. We will be hooking the camper (2011 Jayco JayFlight 2 32BHDS)
to my truck (2005 F250 Lariat CrewCab with 6.0L Powerstroke Diesel)
And hitting the great American "road." No reservations, just a directional plan. No timetable. We'll be going where the wind blows, so to speak.
While we've had the camper for a little over a year, it has spent all of its life at our family's farm, and has not, as of yet, ventured out on such an experience. Likewise, my experience pulling the beast (a little over 36 feet long including tongue, plus we'll be extending the bike rack off the back. Adding another 3 feet or so) is limited to moving it around on the farm and moving it from the dealership to the farm initially (quite an ordeal, which I may share someday).
So, the pulling of the camper itself will be an adventure. But, on top of that, we expect we will be spending hours in the truck cab (group of 5 - Melissa and I in the front, with all 3 girls in the back seat) driving. This will be our first trip of more than about 4 hours in the truck. It could be fun! (uh huh...)
But, the loose plan we do have should take us to some good spots for the girls. We're considering Niagara Falls, Hershey, PA, Chincoteague, VA, and Colonial Williamsburg, VA. In fact, we amassed that list of destinations based upon trying to include something for everyone. Cadence asked for a roller coaster (Hershey), Harper asked for a beach (Chincoteague), and Finley went back and forth copying them (she couldn't decide, apparently). Melissa has wanted to go to Colonial Williamsburg for some time, and I have been to Niagara Falls, but it has been some time, and I thought the girls would get a kick out of a ride on The Maid of the Mist (which I have never actually gotten to do).
If I can keep to it, I plan to try to log our "Adventures" here for others to share. These may include posts about enjoyable family experiences, or rants about excruciating disasters. Time will tell.
The good thing is, with no formal reservations, we can always just turn the rig around, and head home. But, we've been looking forward to this trip for some time, so I suspect we will keep to it, and enjoy it no matter what happens.
Wish us luck!
In less than a week, our family will be embarking on what may prove to be an exhilarating or, alternatively, a disastrous experience. We will be hooking the camper (2011 Jayco JayFlight 2 32BHDS)
to my truck (2005 F250 Lariat CrewCab with 6.0L Powerstroke Diesel)
And hitting the great American "road." No reservations, just a directional plan. No timetable. We'll be going where the wind blows, so to speak.
While we've had the camper for a little over a year, it has spent all of its life at our family's farm, and has not, as of yet, ventured out on such an experience. Likewise, my experience pulling the beast (a little over 36 feet long including tongue, plus we'll be extending the bike rack off the back. Adding another 3 feet or so) is limited to moving it around on the farm and moving it from the dealership to the farm initially (quite an ordeal, which I may share someday).
So, the pulling of the camper itself will be an adventure. But, on top of that, we expect we will be spending hours in the truck cab (group of 5 - Melissa and I in the front, with all 3 girls in the back seat) driving. This will be our first trip of more than about 4 hours in the truck. It could be fun! (uh huh...)
But, the loose plan we do have should take us to some good spots for the girls. We're considering Niagara Falls, Hershey, PA, Chincoteague, VA, and Colonial Williamsburg, VA. In fact, we amassed that list of destinations based upon trying to include something for everyone. Cadence asked for a roller coaster (Hershey), Harper asked for a beach (Chincoteague), and Finley went back and forth copying them (she couldn't decide, apparently). Melissa has wanted to go to Colonial Williamsburg for some time, and I have been to Niagara Falls, but it has been some time, and I thought the girls would get a kick out of a ride on The Maid of the Mist (which I have never actually gotten to do).
If I can keep to it, I plan to try to log our "Adventures" here for others to share. These may include posts about enjoyable family experiences, or rants about excruciating disasters. Time will tell.
The good thing is, with no formal reservations, we can always just turn the rig around, and head home. But, we've been looking forward to this trip for some time, so I suspect we will keep to it, and enjoy it no matter what happens.
Wish us luck!
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