Justin has been busy online, looking for great travel deals. He finally found a flight he couldn't pass up--here to Orlando, $29. Yep. Of course they nickel and dime you to death with fees, but even with the taxes and the other "dings", it was still only $59. A bargain. So Monday, Justin will be flying to Orlando, and Josh will pick him up there for a 6 or 7 hour car ride to ATL. Not the best way to do things, but certainly the cheapest. It would have been several hundred more dollars for a direct flight, which we really can't do right now.
Justin got out his shorts, summer clothes, and swim trunks, and he will be living a life of leisure for a month or so down in the south. I am so excited for him....just wish I could go, too.
Thursday, April 30, 2009
Wednesday, April 15, 2009
Home
Our trip to Iowa City this morning was a good one. No rain, snow, dark, road construction or detours. We made great time and had some good conversation. We have done this same trip many times, so we know about how much time we have left based on where we are on the Interstate.
Once at the hospital, we went downstairs for Justin's MRI. He used to hate them and wanted Valium to relax. But since losing 60 lbs, the tube isn't so tight anymore. Now his worry is the IV. For some reason, there are very few people that can get an IV into Justin without numerous pokes. He gets stuck many times and gets some "poke and twists" or double pokes. All the while, the person is apologizing and wondering how they lost their touch. He has bruises on his arms and hands for days afterward. He is really sick of it.
Today's MRI went well, except for the IV, then we went to the cancer center for the meeting with the team. There was a resident doctor there to meet, who was new. She went through ALL the neurological tests that she could do, instead of the three or four the regular doctors do. And she had braces on her teeth! Justin thought it was funny that his doc has braces. She was very thorough and kind. She had a med student with her, who watched. That is normal.
She showed us a frame of the MRI from today. Then she pulled up the one from April. It was amazing! Even I could see the difference in the size of the tumor. Actually, what we thought was tumor is actually edema (swelling). Our first look at his brain in April showed this swelling area about the size of a pear. Now it is more like a golf ball. Of course we are only seeing a "slice" of his brain in both pics. But it was very noticeable, so no matter what it is...it is smaller.
Then the main doc came in and joined us. He went through a few tests and explained everything again. We were able to ask some questions. Justin wanted to know if he would be able to ride roller coasters when on his trip to Atlanta. The doctor looked sorry, but said no. He said there is too much going on in Justin's head to do risky stuff like boxing, football, bungee jumping, roller coasters, etc. Justin laughed and said in his future, he would be the one at the amusement park sitting with the baby and getting his pictures taken with the princesses while mommy rides the wild rides with the other kids. He sees the humor in it. Not being able to ride a roller coaster is not a big deal.
We talked about the AVM (the cluster of veins and vessels that could bleed) as well as the thyroid. Justin's doctor did not agree with the endocrinologist and wants Justin seen anyway, so that will be in July during the next appointment and MRI.
I asked a lot about exactly what type of tumor it is. I see information on the computer all the time and it helps to know more of what I am looking for. I was wondering about cells called astrocytes. Does Justin's cancer include these or not? He said that although there are probably a few, certainly there are not enough to do a count. As long as there aren't any to do a count, it is grade II. Once there are astrocytes, it may be changing and getting more aggressive. Then it might be changed to grade III cancer. Once there are many agressive astrocytes, it will be grade IV. Good to know.
Off we went to the Hope Lodge to reconnect with our friends there. It was great, and they decided that we will grill out in July when we are there next time. Justin was also promised tickets on the field at one of the big Iowa football games...so we will be able to make some plans at that time.
Then we went to eat at Old Chicago Pizza, perhaps the worst meal I have eaten out in a long, long time. It made McDonalds look like a 5 star. Ugh. There is only one thing worse than horrible food in a restarant, and that is having to pay for the privelege! Ugh. It was recommended by someone and we tried it. I am sure that every single place in town has better food...we will be much more selective next time.
We didn't do the mall, or walking or anything else, just came home. It's good to be here.
Once at the hospital, we went downstairs for Justin's MRI. He used to hate them and wanted Valium to relax. But since losing 60 lbs, the tube isn't so tight anymore. Now his worry is the IV. For some reason, there are very few people that can get an IV into Justin without numerous pokes. He gets stuck many times and gets some "poke and twists" or double pokes. All the while, the person is apologizing and wondering how they lost their touch. He has bruises on his arms and hands for days afterward. He is really sick of it.
Today's MRI went well, except for the IV, then we went to the cancer center for the meeting with the team. There was a resident doctor there to meet, who was new. She went through ALL the neurological tests that she could do, instead of the three or four the regular doctors do. And she had braces on her teeth! Justin thought it was funny that his doc has braces. She was very thorough and kind. She had a med student with her, who watched. That is normal.
She showed us a frame of the MRI from today. Then she pulled up the one from April. It was amazing! Even I could see the difference in the size of the tumor. Actually, what we thought was tumor is actually edema (swelling). Our first look at his brain in April showed this swelling area about the size of a pear. Now it is more like a golf ball. Of course we are only seeing a "slice" of his brain in both pics. But it was very noticeable, so no matter what it is...it is smaller.
Then the main doc came in and joined us. He went through a few tests and explained everything again. We were able to ask some questions. Justin wanted to know if he would be able to ride roller coasters when on his trip to Atlanta. The doctor looked sorry, but said no. He said there is too much going on in Justin's head to do risky stuff like boxing, football, bungee jumping, roller coasters, etc. Justin laughed and said in his future, he would be the one at the amusement park sitting with the baby and getting his pictures taken with the princesses while mommy rides the wild rides with the other kids. He sees the humor in it. Not being able to ride a roller coaster is not a big deal.
We talked about the AVM (the cluster of veins and vessels that could bleed) as well as the thyroid. Justin's doctor did not agree with the endocrinologist and wants Justin seen anyway, so that will be in July during the next appointment and MRI.
I asked a lot about exactly what type of tumor it is. I see information on the computer all the time and it helps to know more of what I am looking for. I was wondering about cells called astrocytes. Does Justin's cancer include these or not? He said that although there are probably a few, certainly there are not enough to do a count. As long as there aren't any to do a count, it is grade II. Once there are astrocytes, it may be changing and getting more aggressive. Then it might be changed to grade III cancer. Once there are many agressive astrocytes, it will be grade IV. Good to know.
Off we went to the Hope Lodge to reconnect with our friends there. It was great, and they decided that we will grill out in July when we are there next time. Justin was also promised tickets on the field at one of the big Iowa football games...so we will be able to make some plans at that time.
Then we went to eat at Old Chicago Pizza, perhaps the worst meal I have eaten out in a long, long time. It made McDonalds look like a 5 star. Ugh. There is only one thing worse than horrible food in a restarant, and that is having to pay for the privelege! Ugh. It was recommended by someone and we tried it. I am sure that every single place in town has better food...we will be much more selective next time.
We didn't do the mall, or walking or anything else, just came home. It's good to be here.
Monday, April 13, 2009
Another Trip
Wednesday, April 15 is the trip we have been waiting for. We will once again go to Iowa City to meet with Justin's medical team for an evaluation of the radiation treatments. He will have another MRI and whatever other tests the doctors deem important. Then after the tests, we will meet the nurses, residents and doctors that care for Justin. We will get a report on his health and have a chance to ask questions.
I did hear from a nurse about Justin's thyroid. He was to have an appointment this week to see the endocrinologist for his one year check. The nurse said the doctor looked over Justin's chart and decided that due to the brain cancer, he recommends that we just have the primary doctor do regular checks of the numbers and let them know if they get outside of normal. No sense doing surgery or anything so soon after radiation. That is a relief. His thyroid is so big it does block his airway some when eating or sleeping, but evidently not bad enough for them to remove part of it.
We have almost everything ready for the trip. I got a free oil change card from some friends and was able to get my oil changed on my lunch hour today. They checked the tire pressure and topped off the fluids, so the truck is in as good of shape as it can be. I got Wednesday off--with just enough PTO time built up to get paid for the whole day. This trip is right before pay day (only my third since January), so we are still trying to get the funds together for gas and a meal. I know, it sounds bad...but this is just our reality for now! We didn't sign up for this, so we let God take care of us as He sees fit...and He has done amazing things so far. Although we literally don't have two nickels to rub together, I have not used credit, have not borrowed money, and have not missed too many meals. Rent has been paid every month, and although all the bills are at least a month behind, nothing has been shut off so far. It is not a fun way to live, but we see God working, and we trust Him.
Once we are in Iowa City, we will stop at Hope Lodge to catch up with some of our friends. We hope to visit a dynamo little boy from our church that is critically ill with a seizure disorder. This is very serious and we hope we can encourage his mom a little bit. We may walk a mile or so in Carver Hawkeye Arena for the fun of it. Then we will head home and will probably be home by supper. Lots packed into one day, that is for sure.
Please keep praying! We couldn't do it without you!
I did hear from a nurse about Justin's thyroid. He was to have an appointment this week to see the endocrinologist for his one year check. The nurse said the doctor looked over Justin's chart and decided that due to the brain cancer, he recommends that we just have the primary doctor do regular checks of the numbers and let them know if they get outside of normal. No sense doing surgery or anything so soon after radiation. That is a relief. His thyroid is so big it does block his airway some when eating or sleeping, but evidently not bad enough for them to remove part of it.
We have almost everything ready for the trip. I got a free oil change card from some friends and was able to get my oil changed on my lunch hour today. They checked the tire pressure and topped off the fluids, so the truck is in as good of shape as it can be. I got Wednesday off--with just enough PTO time built up to get paid for the whole day. This trip is right before pay day (only my third since January), so we are still trying to get the funds together for gas and a meal. I know, it sounds bad...but this is just our reality for now! We didn't sign up for this, so we let God take care of us as He sees fit...and He has done amazing things so far. Although we literally don't have two nickels to rub together, I have not used credit, have not borrowed money, and have not missed too many meals. Rent has been paid every month, and although all the bills are at least a month behind, nothing has been shut off so far. It is not a fun way to live, but we see God working, and we trust Him.
Once we are in Iowa City, we will stop at Hope Lodge to catch up with some of our friends. We hope to visit a dynamo little boy from our church that is critically ill with a seizure disorder. This is very serious and we hope we can encourage his mom a little bit. We may walk a mile or so in Carver Hawkeye Arena for the fun of it. Then we will head home and will probably be home by supper. Lots packed into one day, that is for sure.
Please keep praying! We couldn't do it without you!
Tuesday, April 7, 2009
Travel
Justin is working on a trip to see his brother in Atlanta. Plane fares are up, but he looks every day to see if he can find that "can't pass it up" price. This is a great time for him to travel...he is happy and healthy and not undergoing any medical care at this time. There is a lot to do in Atlanta, so he will not be bored.
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