Hi everyone...
Emmah has managed to still stay out the hospital, and if it weren't for us having to administer her daily shot, you'd never know that anything is wrong. She was out playing with the neighbor boys and her brothers and sisters today... mostly all day long too. Riding her scooter and in many ways was acting like a normal kid again... I mean she is, with an exception, a normal kid after all... and it's uplifting to see her having fun again. We went to the open house last night and Emmah was, to some extent the center of attention... everyone was just too happy to see her out and about... and that's good for her spirit too.
Wanted to also mention to those of you who DON'T already know, save your pop tabs. Emmah is collecting for Hope Children's Hospital so that they too can get a Ronald McDonald House. She and I made flyers for the school and got them doing it... so please help us out, it's a small thing that most people seem able to do with little effort and it means alot to Emmah. I'm actually surprised at how many tabs we've collected so far and that they keep on coming.
06 October, 2006
03 October, 2006
Okay, I’m combining a few posts here… getting lazy, though Julie will tell you that’s nothing new or surprising.
Wednesday, September 27, 2006-
So time for another Emmah’s Quest update…
It’s been a pretty good run thus far regarding her stay at home… she’s been doing great, all things considered. The weather’s has been great… we love the fall! Emmah felt so good this past Monday, she got out and rode her bike to pick up Rachael from school… how cool is that?!? We had a good weekend too... she went shopping with mom to the dollar store (and the Goodwill store) to pick up presents for her brothers and sister… late birthday presents. Speaking of birthdays… we had a conjoined party on Sunday and actually Emmah felt compelled to help clean! Something is truly wrong when that happens. Anyway… it’s been a good run thus far… but the next round of chemo IS lurking right around the corner.
We’re sitting at Children’s Memorial right now… she’s getting harvested, just like the fall crops. They are taking the stem cells from her and well, there was a bit of a snafu when we got here. Seems that she wasn’t supposed to eat before getting the IJ line and she did. We weren’t informed of this little detail and that meant that since she had eaten, she had to wait six hours before they could insert the IJ line since there was going to be sedation involved. They require a full two days of harvesting to ensure they get enough cells. To get two full days means that one half day on Tuesday, one full day today, Wednesday, and one more half tomorrow, Thursday. Under normal circumstances, this would not be a problem with us, but there’s that field trip she’s been looking forward to now for a while and well keeping us over night means she won’t make the trip tomorrow. How disappointing… especially given this could’ve been totally avoided if someone mentioned that little detail about not eating. So we’ve been praying and keeping our fingers crossed that they can get enough in the day and a half. Obviously we don’t want her to go though the IJ procedure again, so if comes to it, we stay.
Sunday, October 2, 2006-
Greetings from Hope Children’s Hospital y’all…
Today is Sunday the 1st of October and I suppose it’s time for another update… but first I’d like to say thanks to all of you who have been praying for Emmah, it means so much to us to know that there are so many praying for her.
We arrived here on Friday the 29th… one day after Emmah’s field trip to the Tut exhibit at which everyone was very happy and excited to see her… that is to say her fellow students and the teachers, not the museum employees. She seemed to enjoy seeing everyone as well, so it was nice to see that.
There was some question as to whether or not she was going to make the trip at all since she was getting harvested beforehand. We took a trip to the city and Julie and I celebrated our 12th anniversary by ordering pizza from the place where we had the rehearsal dinner 12 years ago (we’ve been there several times in between) and had it delivered to the Kohl’s house. I know, most of you are thinking, “ those Gudemans, they sure know how to party.” The Kohl’s house is affiliated with Children’s and only a block away from the hospital. Emmah and I stayed overnight there since they (Children’s) wanted us at 7:00 in the morning and given that I/we didn’t feel like leaving at some obnoxious hour to beat traffic, we felt it best to do the sleep over thing.
So we arrived Tuesday morning to have the IJ line inserted so they could do the harvest. The nurse was filling out a questionnaire and asked, well confirming that she had nothing but “clears”. I looked puzzled (more so than normal) and with good reason. We were never told that she couldn’t/shouldn’t eat anything before the procedure, so that meant that we had to wait another six hours before they could even insert the line let alone begin the harvest. The harvest was supposed to be a two day harvest… an all day harvest… and now we were looking at a little less than half that for Tuesday and then a full day on Wednesday.
The technician(s) came and got her hooked up and so the harvest began. After about 3 hours, it was time to stop and time for them to go home. I had inquired when would they know how much had been harvested… they said in the morning… so we had to wait until Wednesday morning. Lemme step back for a minute and tell you that they were hoping to harvest 4.0 total for the two day… that’s enough for them to do two transplants. Anyway… Wednesday morning came and I asked the tech how much was harvested yesterday… she told me that they got 1.1… so I asked what exactly does that equate to? She said it’s 1.1 times 10 to the eight power, times some other number and then you subtract the national deficit and divide by the prime lending rate. Okay, so it’s not all that, but it was a fairly complicated equation and one that never did get me a total cell number. They also said that they would run Emmah longer to make up for the lost time the day before in hopes that she/we wouldn’t have to stay another night and then lose out on the field trip too. Well, we got a bountiful harvest cuz at the end of Wednesday, they did a count to determine if we could go home or if we’d be staying… they were able to harvest a two day total of 4.45… so we made it and were allowed to go home. Hooray!
So harvest done… field trip done… and so now it’s on to the third round of chemo, which takes us to where we are now. Two days down and three to go… and if how she’s handled the first two days, she should be able to go home Wednesday morning/afternoon which would be fantastic.
Before we started this past week… beginning with last Monday the 25th… she really has made tremendous improvements. She actually was out riding her bike and playing a little. She even managed to get out shopping with Julie some too, so it has been a good past couple of weeks. And… actually we found out why. During this round of chemo, she was scheduled to get a CT scan… to see how things were going. Well… the tumor has shrunk to one quarter of its original size… that’s right three fourths of it is gone. I sat down with the doctor and he showed me the scan and put it along side one of the first ones. He actually used the word remarkable in describing her progress, that and this is the best they could’ve hoped for… SO… The left kidney is back to its normal self and the aorta is no longer wrapped in tumor. While this IS very good news, we are still being cautious since the mountain we are climbing is a tall one filled with loose rock and slippery surfaces. All this has allowed for is for us to take a couple of more steps toward the top a little more quickly. Don’t get me wrong, I think that the fact that it’s shrunk so much so quickly is fantastic… I do, but I’m not going to get all giddy over it since we still have a long long way to go yet to claim total victory.
KUIYP & together we will all get through this…
Tuesday, October 3, 2006-
One more day to go and then provided nothing changes, specifically her getting a fever, we will be going home tomorrow. We had some pretty big storms roll through the area and there are many places without power round here. No problems here at the hospital though.
Like I said, one more night of chemo, tonight, and then it’s homeward bound. Right now she’s out with Child Life and is involved with a music thing in the playroom, so that’s good for her to get out of the room. We did go outside yesterday afternoon… just before the rains came. We were sitting out watching the lightning and I was pointing out how you can tell if it’s raining in the distance, and so we watched some of the rain to the north move eastward.
She’s feeling a little more tired today, her hemoglobin is low and she will be getting another transfusion tonight… after chemo. Still can’t wrap my head around that so much of the tumor is gone already after only two rounds, but it is and I will embrace every victory no matter how small… though ever mindful of the mountain we are climbing.
I would like to again take a moment to say thanks to all of you who have helped us through this crisis… without all of you, I don’t know how we would have made it this far. We can’t thank God enough for the miracle he is performing… nor can we thank him enough for giving us such friends as you… we are truly blessed… we can’t thank you enough.
Until the next entry…
KUIYP
Wednesday, September 27, 2006-
So time for another Emmah’s Quest update…
It’s been a pretty good run thus far regarding her stay at home… she’s been doing great, all things considered. The weather’s has been great… we love the fall! Emmah felt so good this past Monday, she got out and rode her bike to pick up Rachael from school… how cool is that?!? We had a good weekend too... she went shopping with mom to the dollar store (and the Goodwill store) to pick up presents for her brothers and sister… late birthday presents. Speaking of birthdays… we had a conjoined party on Sunday and actually Emmah felt compelled to help clean! Something is truly wrong when that happens. Anyway… it’s been a good run thus far… but the next round of chemo IS lurking right around the corner.
We’re sitting at Children’s Memorial right now… she’s getting harvested, just like the fall crops. They are taking the stem cells from her and well, there was a bit of a snafu when we got here. Seems that she wasn’t supposed to eat before getting the IJ line and she did. We weren’t informed of this little detail and that meant that since she had eaten, she had to wait six hours before they could insert the IJ line since there was going to be sedation involved. They require a full two days of harvesting to ensure they get enough cells. To get two full days means that one half day on Tuesday, one full day today, Wednesday, and one more half tomorrow, Thursday. Under normal circumstances, this would not be a problem with us, but there’s that field trip she’s been looking forward to now for a while and well keeping us over night means she won’t make the trip tomorrow. How disappointing… especially given this could’ve been totally avoided if someone mentioned that little detail about not eating. So we’ve been praying and keeping our fingers crossed that they can get enough in the day and a half. Obviously we don’t want her to go though the IJ procedure again, so if comes to it, we stay.
Sunday, October 2, 2006-
Greetings from Hope Children’s Hospital y’all…
Today is Sunday the 1st of October and I suppose it’s time for another update… but first I’d like to say thanks to all of you who have been praying for Emmah, it means so much to us to know that there are so many praying for her.
We arrived here on Friday the 29th… one day after Emmah’s field trip to the Tut exhibit at which everyone was very happy and excited to see her… that is to say her fellow students and the teachers, not the museum employees. She seemed to enjoy seeing everyone as well, so it was nice to see that.
There was some question as to whether or not she was going to make the trip at all since she was getting harvested beforehand. We took a trip to the city and Julie and I celebrated our 12th anniversary by ordering pizza from the place where we had the rehearsal dinner 12 years ago (we’ve been there several times in between) and had it delivered to the Kohl’s house. I know, most of you are thinking, “ those Gudemans, they sure know how to party.” The Kohl’s house is affiliated with Children’s and only a block away from the hospital. Emmah and I stayed overnight there since they (Children’s) wanted us at 7:00 in the morning and given that I/we didn’t feel like leaving at some obnoxious hour to beat traffic, we felt it best to do the sleep over thing.
So we arrived Tuesday morning to have the IJ line inserted so they could do the harvest. The nurse was filling out a questionnaire and asked, well confirming that she had nothing but “clears”. I looked puzzled (more so than normal) and with good reason. We were never told that she couldn’t/shouldn’t eat anything before the procedure, so that meant that we had to wait another six hours before they could even insert the line let alone begin the harvest. The harvest was supposed to be a two day harvest… an all day harvest… and now we were looking at a little less than half that for Tuesday and then a full day on Wednesday.
The technician(s) came and got her hooked up and so the harvest began. After about 3 hours, it was time to stop and time for them to go home. I had inquired when would they know how much had been harvested… they said in the morning… so we had to wait until Wednesday morning. Lemme step back for a minute and tell you that they were hoping to harvest 4.0 total for the two day… that’s enough for them to do two transplants. Anyway… Wednesday morning came and I asked the tech how much was harvested yesterday… she told me that they got 1.1… so I asked what exactly does that equate to? She said it’s 1.1 times 10 to the eight power, times some other number and then you subtract the national deficit and divide by the prime lending rate. Okay, so it’s not all that, but it was a fairly complicated equation and one that never did get me a total cell number. They also said that they would run Emmah longer to make up for the lost time the day before in hopes that she/we wouldn’t have to stay another night and then lose out on the field trip too. Well, we got a bountiful harvest cuz at the end of Wednesday, they did a count to determine if we could go home or if we’d be staying… they were able to harvest a two day total of 4.45… so we made it and were allowed to go home. Hooray!
So harvest done… field trip done… and so now it’s on to the third round of chemo, which takes us to where we are now. Two days down and three to go… and if how she’s handled the first two days, she should be able to go home Wednesday morning/afternoon which would be fantastic.
Before we started this past week… beginning with last Monday the 25th… she really has made tremendous improvements. She actually was out riding her bike and playing a little. She even managed to get out shopping with Julie some too, so it has been a good past couple of weeks. And… actually we found out why. During this round of chemo, she was scheduled to get a CT scan… to see how things were going. Well… the tumor has shrunk to one quarter of its original size… that’s right three fourths of it is gone. I sat down with the doctor and he showed me the scan and put it along side one of the first ones. He actually used the word remarkable in describing her progress, that and this is the best they could’ve hoped for… SO… The left kidney is back to its normal self and the aorta is no longer wrapped in tumor. While this IS very good news, we are still being cautious since the mountain we are climbing is a tall one filled with loose rock and slippery surfaces. All this has allowed for is for us to take a couple of more steps toward the top a little more quickly. Don’t get me wrong, I think that the fact that it’s shrunk so much so quickly is fantastic… I do, but I’m not going to get all giddy over it since we still have a long long way to go yet to claim total victory.
KUIYP & together we will all get through this…
Tuesday, October 3, 2006-
One more day to go and then provided nothing changes, specifically her getting a fever, we will be going home tomorrow. We had some pretty big storms roll through the area and there are many places without power round here. No problems here at the hospital though.
Like I said, one more night of chemo, tonight, and then it’s homeward bound. Right now she’s out with Child Life and is involved with a music thing in the playroom, so that’s good for her to get out of the room. We did go outside yesterday afternoon… just before the rains came. We were sitting out watching the lightning and I was pointing out how you can tell if it’s raining in the distance, and so we watched some of the rain to the north move eastward.
She’s feeling a little more tired today, her hemoglobin is low and she will be getting another transfusion tonight… after chemo. Still can’t wrap my head around that so much of the tumor is gone already after only two rounds, but it is and I will embrace every victory no matter how small… though ever mindful of the mountain we are climbing.
I would like to again take a moment to say thanks to all of you who have helped us through this crisis… without all of you, I don’t know how we would have made it this far. We can’t thank God enough for the miracle he is performing… nor can we thank him enough for giving us such friends as you… we are truly blessed… we can’t thank you enough.
Until the next entry…
KUIYP
05 March, 2005
01 March, 2005
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