Since we just got yet another one yesterday, I thought I would share some of the funny (and actually kind of sad) wrong # phone calls Sam and I've received. There's a thing to be said about moving twice in the past 2 1/2 years with new home phone numbers at two different locations.
Phone call #1 - In Louisville (while I'm pregnant), a black man keeps calling our house phone (in a string of late night phone calls/voicemails left) b/c "I" gave him my number at the club "some time ago" and he wants to meet up. I tell the guy he's got the wrong number, and I'm pregnant and not the person he's thinking of, so please quit calling our place, especially at midnight -- and he's like "C'mon baby, you weren't pregnant 6 months ago when you were hitting on me and giving me your number." It seriously took like three times of answering this guys calls (and about 6 more messages on our home voicemail) for him to realize he no longer had Sierra's number... Sorry buddy!
Phone call #2 - This one was terrible! Sam actually got the message on his cell phone, and it was an older lady in Florida leaving a message for a relative that she had just found out she had a few months to live and wanted to patch up their arguement before she dies! (and no, we weren't being punk'd... this was actually true) Sam, plays the message for me, and is like "We need to call her back and let her know she dialed the wrong number." So Sam calls the lady back, and at first this poor lady thinks it's her relative just making an excuse not to talk to her! Luckily, we finally convinced her we weren't the people she was looking for! I sincerely hope things turned out ok for that lady.
Phone call #3 - At our new home in Tennessee, we have received COUNTLESS phone calls for Amanda Seaton. She even (at the beginning of this school year when she obviously did not have this phone number any longer) gave the elementary school our house number for her child! The poor child must get in trouble or sick a lot, because I've talked to the school two or three times about how I can't pick up this kid, because I'm no relation, and no, Amanda Seaton doesn't live here!
Phone call #4 - I never keep up with checking our house voicemails, and on Christmas Eve Amanda Seaton may have struck again. Three days after the fact, I learn that Copper Cellar had called to confirm our reservation of five for Christmas Day. Well, once again, NOT US!
Phone call #5 - Sam went back to work yesterday for the first time since taking chemo. He left his cell phone at the house, and it goes off like every 5 minutes for about a half hour. So I call him at work and tell him this unsaved number keeps calling his cell phone. He looks it up on white pages and it's a Plasma lab in Knoxville. Thinking maybe somehow this has to do with bloodwork he has to have done, he calls the number back. Some random person (probably a college kid) kept dialing the wrong number to try and have Sam pick him up after he donated plasma. (Sam just has a generic answering service on his phone, so the poor kid probably just thinks his friend wouldn't answer!)
FB Msg #1 - Ok, so this isn't actually a phone call, but this is the most hilarious fb msg I've ever received. In the midst of receiving all these strange phone calls in Louisville, a lady messages me on facebook and tells me she thinks she might be my husband's long lost sister he never met. Her father had been involved in an affair so his "real" family never knew about her and now she's trying to track down her siblings. Well, first of all, besides not knowing Sam's dad's name, in her picture she actually looked like she may be the same age as Sam's parents. So, it would be kind of impossible for Sam's dad to have a child the same age as himself! She just thought it had be us, b/c she hadn't been able to find that many "Crass's." Well, good luck with your search lady, but your long lost sibling is not my husband!
Anyways, I'm sure everyone has a wrong number story or two, but it just seemed like Sam and I've had so many memorable ones the past couple years, I had to pass a few along. =) Happy New Year's Eve to everyone!
Friday, December 31, 2010
Tuesday, December 7, 2010
More Sammy News
So, lets see, I've had some questions about Sammy's treatment, so I thought I would answer those and give an update on how he is doing! =) Sam started taking campath (or alemtuzumab) last Monday and was given an infusion for five days. Each day he had to start by taking various over the counter and prescription medicines in the morning, and then Monday through Wednesday he was given an infusion for an hour of steroids. After that first hour, he would then be given chemo for another four hours. On Thursday and Friday he was only given chemo with no steroids beforehand. Below are some of the questions I've been asked about his treatment:
1) Will he lose his hair? Nope! There are different kinds and different strengths of chemo. While campath is a very strong chemotherapy treatment it doesn't cause people to lose their hair when being used for MS.
2) Why would Sam sign up for this since no one could tell he had MS? It was definitely a controversial decision (and a hard decision to make) that Sam would get this chemo treatment. There were definitely people that thought he shouldn't do an experimental treatment, especially since his MS is not noticable to anyone on a day to day basis. MS is a very unpredictable disease though. There are people with MS that go decades without any problems, and then there are people that deal with their MS every couple months or even every single day! Usually someone with a bad case of MS has to walk with a cane or is in a wheelchair, or possibly worse. The treatment that Sam received last week has been announced in European journals as a possible "cure" for MS, which until now has been thought to be a disease that has no cure. While the chemo treatment is still in the experimental phases, it has taken people that were completely bed ridden to now, that same person is winning European golf championships.
3) So why didn't we wait to see if Sam got really bad to try this treatment? Well, because in the past 15 years of research on this treatment, they've found it's a "cure" the earlier you do it. Every year we would have waited to have the treatment, the chance of it being a "cure" for Sam would have gone down. The treatment has not "cured" people that have had MS for a long time. It has sometimes still helped these people, but its not been a cure by any means.
4) If this treatment is a "cure" for MS, why any hesitation about it at all? Well, with any drug that isn't FDA approved, its not been around that long. When Sam and I were talking to the doctor, they were comparing the known side effects with around 150 - 180 people worldwide that have had this treatment. That's it. They're not comparing it to thousands or even hundreds. So they really can't know all the side effects someone can have from this treatment, because its not been used as a treatment on anyone over 15 years ago. That's why they call it a "cure," because some of the first people to take it haven't had problems for 15 years, but they don't know if it will last another 15 years or if it won't?
Also, there are serious complications that can come from this treatment, like death. There were two ways Sam could have died or had very serious complications last week just while receiving the infusion itself. They have had people whose lungs have collapsed and others who have had heart attacks or anaphylactic (allergic) reactions to the medication. That's one of the reasons he had to take so many pills before starting an infusion each day, because they've now come up with a combination of medicines they think should help people not have those side effects. We were concerned about Sam last week because Thursday night he started having very strong chest pains, so they had to check him out thoroughly before he could continue with his last day of treatment on Friday. Luckily, Sam ended up reacting very well to the chemo (thus far) and not having any of the short term side effects. Besides a bad headache and insomnia (and then the chest pains), he did much better last week than many people on this treatment do! So we were very thankful about that!
5) What are the potential longterm effects? This is the reason we would have opted not to do this treatment. Luckily, the majority of the known longterm effects are very treatable if caught early. Sam will have monthly blood tests indefinitely to check and make sure that he's not coming down with one of these diseases. Most of the diseases are autoimmune diseases like ITP or Graves disease, which if the normal person got this disease they would have it for life. Luckily (with the exception of Graves disease), if Sam gets one of these diseases and it is caught early (through his blood tests or external symptoms) he should get rid of the disease permanently in three months!
6) Can anyone with MS have this treatment? No, since its not FDA approved there are only certain doctors that can get insurance companies to pay for this treatment. We are VERY LUCKY that one of the only doctors in the USA being able to get this approved is in Knoxville. Also, Sam had to pass certain physical aspects... he couldn't have things like heart disease, cancer, or blood disorders. If you have those things you aren't eligible for this treatment.
Anyways, right now Sam has been feeling much better than expected. He has been getting cabin fever this week since he has to be a hermit right now. The main concern is him not being exposed to other people and the chance of catching any of these winter/flu/cold viruses going around. For him a small cough could turn into pneumonia/shingles, etc... His immune system is at zero, but should build back up pretty quickly! Thanks for the prayers!
1) Will he lose his hair? Nope! There are different kinds and different strengths of chemo. While campath is a very strong chemotherapy treatment it doesn't cause people to lose their hair when being used for MS.
2) Why would Sam sign up for this since no one could tell he had MS? It was definitely a controversial decision (and a hard decision to make) that Sam would get this chemo treatment. There were definitely people that thought he shouldn't do an experimental treatment, especially since his MS is not noticable to anyone on a day to day basis. MS is a very unpredictable disease though. There are people with MS that go decades without any problems, and then there are people that deal with their MS every couple months or even every single day! Usually someone with a bad case of MS has to walk with a cane or is in a wheelchair, or possibly worse. The treatment that Sam received last week has been announced in European journals as a possible "cure" for MS, which until now has been thought to be a disease that has no cure. While the chemo treatment is still in the experimental phases, it has taken people that were completely bed ridden to now, that same person is winning European golf championships.
3) So why didn't we wait to see if Sam got really bad to try this treatment? Well, because in the past 15 years of research on this treatment, they've found it's a "cure" the earlier you do it. Every year we would have waited to have the treatment, the chance of it being a "cure" for Sam would have gone down. The treatment has not "cured" people that have had MS for a long time. It has sometimes still helped these people, but its not been a cure by any means.
4) If this treatment is a "cure" for MS, why any hesitation about it at all? Well, with any drug that isn't FDA approved, its not been around that long. When Sam and I were talking to the doctor, they were comparing the known side effects with around 150 - 180 people worldwide that have had this treatment. That's it. They're not comparing it to thousands or even hundreds. So they really can't know all the side effects someone can have from this treatment, because its not been used as a treatment on anyone over 15 years ago. That's why they call it a "cure," because some of the first people to take it haven't had problems for 15 years, but they don't know if it will last another 15 years or if it won't?
Also, there are serious complications that can come from this treatment, like death. There were two ways Sam could have died or had very serious complications last week just while receiving the infusion itself. They have had people whose lungs have collapsed and others who have had heart attacks or anaphylactic (allergic) reactions to the medication. That's one of the reasons he had to take so many pills before starting an infusion each day, because they've now come up with a combination of medicines they think should help people not have those side effects. We were concerned about Sam last week because Thursday night he started having very strong chest pains, so they had to check him out thoroughly before he could continue with his last day of treatment on Friday. Luckily, Sam ended up reacting very well to the chemo (thus far) and not having any of the short term side effects. Besides a bad headache and insomnia (and then the chest pains), he did much better last week than many people on this treatment do! So we were very thankful about that!
5) What are the potential longterm effects? This is the reason we would have opted not to do this treatment. Luckily, the majority of the known longterm effects are very treatable if caught early. Sam will have monthly blood tests indefinitely to check and make sure that he's not coming down with one of these diseases. Most of the diseases are autoimmune diseases like ITP or Graves disease, which if the normal person got this disease they would have it for life. Luckily (with the exception of Graves disease), if Sam gets one of these diseases and it is caught early (through his blood tests or external symptoms) he should get rid of the disease permanently in three months!
6) Can anyone with MS have this treatment? No, since its not FDA approved there are only certain doctors that can get insurance companies to pay for this treatment. We are VERY LUCKY that one of the only doctors in the USA being able to get this approved is in Knoxville. Also, Sam had to pass certain physical aspects... he couldn't have things like heart disease, cancer, or blood disorders. If you have those things you aren't eligible for this treatment.
Anyways, right now Sam has been feeling much better than expected. He has been getting cabin fever this week since he has to be a hermit right now. The main concern is him not being exposed to other people and the chance of catching any of these winter/flu/cold viruses going around. For him a small cough could turn into pneumonia/shingles, etc... His immune system is at zero, but should build back up pretty quickly! Thanks for the prayers!
Saturday, December 4, 2010
Do you want 50 FREE Christmas Cards from Shutterfly?
This is just one of the reasons I LOVE shutterfly, because of offers like this! They have a huge selection of Christmas photo cards http://www.shutterfly.com/cards-stationery/christmas-photo-cards , I was very impressed! Last year was my first year making a Christmas card for our family (we had Brylee, so I thought it would be cute to send one out =) ). This year, it's an extremely hard decision because of all the options Shutterfly has to pick from!
I thought this card was hilarious, because my 18 month old is MAINLY sweet, but can be a little bit of both =).
I thought this card was hilarious, because my 18 month old is MAINLY sweet, but can be a little bit of both =).
I thought this card was adorable, and would be good with a family picture of Brylee, Sam, & I.
And seriously, how cute is this one?
All of these cards are adorable, but I may decide on a completely different card because they have a lot of cute options!
Christmas cards aren't the only type of cards Shutterfly has a nice selection of. They also have birthday cards http://www.shutterfly.com/cards-stationery/birthday-cards-stationery. I sent out personalized birthday cards to Brylee's 1st birthday last year, and they turned out so cute =).
Also, every single year I make a family calendar (which I'm behind on this year, because our calendar always expires at the end of November instead of December!). I guess its because the first year I made the calendar it was October and I thought "We really need a calendar." So our family calendars have ended up going from November through November. Which if you want to make a calendar in the middle of the year, or on a random month, Shutterfly is perfect for that as well, because they let you choose your calendar start date! =) I also like all of the design options. If you want to check out shutterfly calenders yourself go here http://www.shutterfly.com/calendars
And finally if you are interested in receiving 50 free Christmas cards from Shutterfly, here is the link with the directions for how to get your own =) http://blog.shutterfly.com/5358/holiday2010-blog-submission-form/
Thursday, December 2, 2010
An Overview from Sammy
Well, as many of our friends and family know, Sammy started chemo on Monday. Here's a quick overview (written by Sammy, it it were by me it would not be brief!) of what has taken place since his MS diagnosis about 18 months ago. Additions by me are in parenthesis =).
In April of 2009 I was diagnosed with multiple sclerosis, and in May of 2009 I began taking Rebif injections. Rebif is a interferon beta-1a subcutaneous injection that comes as a solution to inject subcutaneously (under the skin) three times a week. Basically, it is like injecting your body with the flu so your immune system attacks it instead of attacking your central nervous system. During my follow up MRI in September of 2009, the doctors noticed that the Rebif wasn't working like it was supposed to. At this time the doctor suggested I start taking a once a month IV drug called Tysabri. However, I decided not to take this drug due to the fact it had an FDA "black box" label. The drug has also been associated with PML(a deadly brain virus) and that wasn't a risk I was wanting to take at that time.
I then began looking at other multiple sclerosis doctors to get a second opinion. I was lucky enough to get an appointment at the medical center in Houston, TX next to MD Anderson (The same doctor's office that country singer Clay Walker goes to for his MS). The doctors there advised me not to start the Tysabri infusions (for reasons we knew, and for reasons we didn't know!), but to take a week of IV steroids and continue with the Rebif injections. They also advised me it would be beneficial to try an experimental drug called alemtuzumab. However, they would need special permission from my insurance, because this drug wasn't FDA approved for treating MS and had only been approved for treating leukemia. My insurance at this time was Aetna. So we began the approval process in November of 2009 and Aetna rejected the possibility of me getting alemtuzumab in January of this year. (At the time the doctors in Texas told us that the only doctor in the country that was able to get this medicine approved by insurance was in Knoxville, TN!)
In May of this year we moved from Louisville, KY back to Knoxville, TN. During this transition I talked with the doctors in Texas about the doctor in Knoxville that could get alemtuzumab approved. Dr. Sybil Wray has been such a blessing! She is actually part of the ten year trial that has been working with Cambridge on getting the alemtuzumab FDA approved for MS, which is expected to happen in March of 2011. She was able to get the treatment approved through Cigna in one week at the beginning of October. I began daily IV infusions this week on Monday, Nov. 29. These infusions will basically shut down my immune system and allow it to reboot itself. They are hoping that the T and B cells grow back without any memory of the disease and will not continue to attack my CNS.
For more on the chemo treatment Sammy is taking:
http://en.wikipedia.org/wiki/Alemtuzumab
I'll write an update tomorrow on Sammy's treatment has gone this week! Thanks for all the prayers =).
In April of 2009 I was diagnosed with multiple sclerosis, and in May of 2009 I began taking Rebif injections. Rebif is a interferon beta-1a subcutaneous injection that comes as a solution to inject subcutaneously (under the skin) three times a week. Basically, it is like injecting your body with the flu so your immune system attacks it instead of attacking your central nervous system. During my follow up MRI in September of 2009, the doctors noticed that the Rebif wasn't working like it was supposed to. At this time the doctor suggested I start taking a once a month IV drug called Tysabri. However, I decided not to take this drug due to the fact it had an FDA "black box" label. The drug has also been associated with PML(a deadly brain virus) and that wasn't a risk I was wanting to take at that time.
I then began looking at other multiple sclerosis doctors to get a second opinion. I was lucky enough to get an appointment at the medical center in Houston, TX next to MD Anderson (The same doctor's office that country singer Clay Walker goes to for his MS). The doctors there advised me not to start the Tysabri infusions (for reasons we knew, and for reasons we didn't know!), but to take a week of IV steroids and continue with the Rebif injections. They also advised me it would be beneficial to try an experimental drug called alemtuzumab. However, they would need special permission from my insurance, because this drug wasn't FDA approved for treating MS and had only been approved for treating leukemia. My insurance at this time was Aetna. So we began the approval process in November of 2009 and Aetna rejected the possibility of me getting alemtuzumab in January of this year. (At the time the doctors in Texas told us that the only doctor in the country that was able to get this medicine approved by insurance was in Knoxville, TN!)
In May of this year we moved from Louisville, KY back to Knoxville, TN. During this transition I talked with the doctors in Texas about the doctor in Knoxville that could get alemtuzumab approved. Dr. Sybil Wray has been such a blessing! She is actually part of the ten year trial that has been working with Cambridge on getting the alemtuzumab FDA approved for MS, which is expected to happen in March of 2011. She was able to get the treatment approved through Cigna in one week at the beginning of October. I began daily IV infusions this week on Monday, Nov. 29. These infusions will basically shut down my immune system and allow it to reboot itself. They are hoping that the T and B cells grow back without any memory of the disease and will not continue to attack my CNS.
For more on the chemo treatment Sammy is taking:
http://en.wikipedia.org/wiki/Alemtuzumab
I'll write an update tomorrow on Sammy's treatment has gone this week! Thanks for all the prayers =).
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