Melasuckanoma

Well one minute you are hanging Christmas lights, and the next minute you are in the ICU at MD Anderson.  This unfortunately is all part of the melanoma journey.  So, what happened?  HOW ARE WE HERE????? It all started on Tuesday morning.  Bennie kind of coyly asked me when I thought they would schedule his next brain MRI.  So of course I ask a bazillion questions, because I immediately know something is up.  After 30 minutes of grilling him he finally tells me he had a bad headache on Monday, and it hurt when he woke up and anytime he would put pressure on his head.  I tell him we need to get it checked out ASAP but of course he tells me its probably sinus issues.  Fast forward a couple days, and he was working late.  He called me around 8pm on Thursday night and said he probably needed to go to the Dr. because he couldn't read, type words, had a headache, and felt really disconnected.  I finished putting the kids to bed, and my parents came over so I could take Bennie to the ER.  Bennie and I were hoping it was a fluke sinus infection (even though we both knew) so we took him to the ST Lukes ER by our house.  They immediately did a CT Scan and found a 2.5 cm brain tumor that was causing a lot of edema around the brain with hemorrhaging as well.   MD Anderson was on diversion status (which means they wont except patients who are at another hospital)  so they wanted to take Bennie by ambulance to another St Lukes that has a neurology department.  We knew we had to get to MD Anderson.  I called the on call Dr. and asked if we could escape and just drive down there.  He said that would be best (but don't tell anyone I told you to do that in case he dies on the way).  So we signed against medical advice and Bennie's brother, Barney, and I hauled butt down to MD Anderson to get him to the ER.  We got him there is 30 minutes, and he was quickly seen by a ton of Dr.'s thoughout the night.  It was determined his brain was too swollen to immediately do surgery.  They put him in ICU for two days and pumped him with steroids to try and reduce the swelling.  It WAS THE LONGEST WEEKEND OF MY LIFE.  He was constantly monitored for signs that he would need emergency surgery, but he held on until his surgery time on Monday.  Monday WAS THE LONGEST DAY OF MY LIFE..... AND SCARIEST.   Bennie went into surgery, and they said it would be about 4 hours.  About two hours in a lady came to put us in a room because she said the DR. wanted to talk to us.  The entire family about died.  We had no clue why she would be talking to us midway, and we all came unglued.  The Dr. came in finally and said the surgery went great, but it the brain was still very swollen.  She said there is a rather large possibility Bennie would have Gertsmann's Syndrome because of the swelling and damage.  Some people don't get it, but she said to expect that.  Gertmann's Syndrome is basically mixing up right and left, unable to solve arithmetic, analytical problems would be difficult, and sensory and spatial issues.  Bennie did great through surgery.  We saw him in recovery soon after, and he looked good.  I was so happy to see him.....and he knew who I was!!! Neurologists continued to do tests on him to test how he was recovering, and he is progressing good.  He still has some trouble with processing thoughts, reading, and typing but we are confident as the swelling continues to subside he will improve.  He got to leave the hospital yesterday, just two days after having brain surgery! AMAZING!!  SOOOOOO.......we are at MD Anderson right now getting a PT scan and will that will determine if has tumors elsewhere in his body.  It will also determine his treatment moving forward.  We will be meeting with his Dr. next week, as well as a radiation oncologist.  Because his brain tumor hemorrhaged there is a large probability it will return or spread across brain.  He will be doing whole brain radiation or a focalized radiation to try and stop that from happening.  It is going to be a rough couple of months getting through all of this, but once again could be worse.  WE are blessed he only had one brain tumor, and we are blessed it happened this week and not Christmas.  The kids were so excited to have Bennie home, and we are praying there are no complications that he has to come back here between now and Christmas.  We want Emmi and Colby to be able to have a nice Christmas with their Daddy!  Please pray he will recover smoothly and we can come up with the best plan of action with the Dr.s. 

Free

We went for results yesterday and got the answer we so desperately wanted to hear.... No Tumors!!!!! We were soooooooooooooooo excited!!! Nothing lit up on the pet scan!! His kidney function is still really elevated and the Dr. Said it was serious that we get that down.  We don't want Bennie to go into kidney failure, so it seems like a great time to let his kidneys heal.  Since Bennie doesn't have any tumors right now they are taking him off his medicine completely for 3 months....or until the next pet scan or until Bennie feels anything abnormal.  All this is scary, but we feel completely and totally blessed that we have this luxury and time to let his kidneys heal!! The worst case would have been going in to find out tumors are growing, and not be able to do treatment because of his kidney situation.  So.... If anything does appear in the near future  hopefully his kidneys will be A ok and we can start a clinical trial or do zelboraf again!  But the good news is we have options right now and he has no tumors!!!  And he won't be on any medicine..... So he will feel good!! Thank you so much for all your prayers, and we are just praising Jesus for this great news!!! It feels amazing to have all that anxiety and worry lifted off your shoulders !!! We can breathe!!!!!! We can eat and sleep again!!  We can enjoy every moment we have right now!!

Scanxiety

Well, its scanxiety time!! That's what we call the anxiety that comes with upcoming scans!! The feeling is horrific.  Let me give you a little glimpse of what it is like coming in for scans.  First, you drive up to this hospital and cringe.  We are back... back to this place that is very last place on the places I would ever want to go to.  UGH!!! Then we go to the waiting room and wait!  Wait! Wait! Wait!  Inside you feel like you want to explode from anxiety.  Then the coffee lady volunteers come in, and offer coffee to all the fellow patrons who are all freaking out on the inside.  Hoards of people go in for the coffee....but not me.  I keep waiting.  I wait for the Xanax and Vodka cart to come by so that my anxiety can be relieved, but it never comes!!  Just kidding....but it would be nice to be sedated until tomorrow afternoon when they deliver results.  Then all the anxious people inhale their caffeine, and that anxious energy is quadrupled.  People start yapping about their ailments, and how horrible of a time they are having.  The people in the waiting rooms are very nice and caring, and can directly relate to what you are going through.  You listen to about 30 conversations at once, and think to yourself how we even got to this point!! We are typically the youngest couple, and get multiple stares from people thinking the same thing.... WHAT ARE THEY DOING HERE!!!!!!!!!  Then Bennie goes back for his scans, and I try and do something on my laptop but usually its unproductive because I can't think straight like right now!!! Then we leave, and we go home and try and occupy our time and thoughts with something other than what the impending results will be. 

The next day we go back for results.  This visit is typically worse anxiety than the day before.  We continue waiting until someone comes into the room and delivers whatever news!  I am praying so hard right now  that everything is still alright.    But it is the first scan he's had since being on the decreased dosage for over 2 months.... so obviously we are scared.   I will let everyone know tomorrow what the news is..............

Protect the Skin You Are In

One of the many questions that people ask Bennie and me is what sunscreen we use since being diagnosed with Stage 4 Melanoma.  I was going to make a list of some websites and links for what we have seen first hand that has worked (and we have tried a ton of products!)

We both learned of this sunscreen through a fellow blogger whose husband has stage 4 melanoma as well!  Her husband also goes to MD Anderson, and I've looked to her as the one of my most helpful mentors through this whole battle: www.martinfamilyjourney.blogspot.com

Anyhow... the sunscreen is www.bluelizard.net
We used it the entire time we were in Hawaii this spring, and none of our family members were sunburned!! It is a little pricier than other sunscreens, but it is great for sensitive skin and they even have a version to use for babies.  It is super thick, and we have found that it offers the best protection!!  You can order it through their website, or amazon as well.  I heard through the grapevine that Target was trying to carry it in their stores, but I haven't seen it there.  I should know since I am there every other day!!


One sunscreen not to get is the aerosol cans.  They are definitely really easy to use, especially for toddlers on the run, but it doesn't get consistent coverage.  Also, our Dr.'s have said they aren't sure what the inhalation of those fumes could do to little lungs.  So... even though it's easy....better safe than sorry!  Once you make sunscreen a part of your daily routine then your little one won't care too much they are getting slathered down with goop!

In addition to sunscreen Bennie also wears SPF clothing daily as well.  We have also purchased special  shirts and hats for all of us for when we will be in the sun all day!  Here are a couple links to check out for sun protection clothing:

www.columbia.com
www.coolibar.com
www.rei.com
www.outdoorresearch.com

Those are a few of the stores that we frequent!  I was having a talk with someone about how they hated that they were so pale..... but I reminded her its better to be pale and have skin that doesn't age than to be tan and have a scar on your left arm that looks like a great white shark took a chunk out of!!

End of Summer!

Here is Bennie and I at his last appointment at MD Anderson.  We had to wait for two hours in the room.. so we got a little bored.

The appointment went as expected... Which is rare.  His kidneys are still about the same, so he is still doing the same thing he has for the last month or so.  They also said that in 2 weeks he will be getting a PET scan instead of his normal ct scans he gets.  They don't want to risk damaging his kidneys anymore with the dye and the PET scan is supposed to be less toxic.  This will be his first full body pet scan, and that is a little scary because we will be taking a look at areas we haven't before. But, we are praying everything is still the same as last time!!!!!

We are still enjoying our summer!!!  Even though the kids started school this week, we got away this weekend for Labor Day.  We just went to the Space Center and Kemah for the day with MiMi and Pops.... And we all had fun!

Keep Calm and Carry On

It's been awhile since the last update, but we are still here.

 The last month has been pretty uneventful.  About a month and a half ago Bennie was taken off of his medicine for a couple of weeks because of his kidney function.  After his last scans and bloodwork his kidneys were still not functioning properly so they reduced his dosage from 3 pills twice per day to 2 pills twice per day.  Then about a month ago that wasn't helping so they further reduced it to just 1 pill twice per day.  Well... that is a bit scary because research shows that the lowest dosage to go down to is 2.  So for a month now Bennie has been down to one.  The good news is that the side effects have gone down... and he has a little bit more energy.  The bad news is that we don't know if his cancer is still being controlled because of the very small dosage he is on.  So, we go back this week for another followup at MD Anderson, and then in another month for another round of scans. 

We went on a nice camping trip in the Hill Country and floated the Guadalupe River for Bennie's fathers 50th Birthday.  We rented a 30 foot travel trailer for the first time:

It was nice to get away for a weekend, and it was nice that Bennie enjoyed himself and felt great!!  He was able to stay out of the sun for the most part and covered up everything and wore sunscreen, but the sun only got to his hands... and they burned.  If he was on the full dose of Zelboraf I'm sure this would be much worse:

 

Here is Colby with the fish he caught:

We have had a nice summer, and we have enjoyed staying indoors away from the brutal Houston heat and sun at the movie theater!  We have seen all of the kids movies that have came out!!!  We are really blessed to have this time where the treatment that Bennie is currently taking hasn't really affected him all that much! 

Also, in about a month I will be walking for the Aim for the Cure Melanoma walk at MD Anderson on September 21st.  It will be fun to raise money for a charity that will fund research to help find a cure for this awful disease!  There have been so many advancements in the last two years in the field of Melanoma, and we pray that more will become available to help Bennie and all those suffering with this cancer. 

Here is my fundraising page if anyone would like to read more about that:

Sponsor JANET LUNSFORD in AIM for the CURE Melanoma Walks

I will update more on Tuesday after the followup appointment!

Rollercoaster Ride

The last week has seemed like the longest week ever.  When you have scheduled scans impending it pretty much makes you feel like you can't breathe.  A nervous wreck is an understatement.  You cannot focus on anything except what your life will be like after the appointments.  You literally never know what the Dr.'s will say or do.  So many times we have gone to MD Anderson expecting one thing, and then we get the complete opposite.  This time was no different.  We went into these scans thinking the worst, and hoping and praying for the best.  Bennie has been having hip pain, and a few headaches which had us on edge.  About 70 percent of people with metastatic melanoma eventually end up getting brain mets.  We thought for sure this was the case.  One of the hardest parts of dealing with this disease is the fact that you can't plan.  In a sense you can plan, but in your mind you are thinking that you really only have the time between now and next scans.  We are thinking in our minds will we be able to go to the circus this weekend? Should we pack bags for the kids in case something is found on the scans and he has to go into the hospital again?  You just never know what to expect.  It is so frightening when worrying about everything that could happen, and its hard to keep the positive thoughts alive and well.  Monday night after all of the scans was very hard.  The MRI tech said to Bennie after he was done... "Well Good Luck".   Those three words scared us so much.  Why did he say that?  Does he know something we don't?  Why couldn't he have just said "Have a nice day"?   Tuesday finally rolled around.... results day!!! We knew whatever news we got would be alright.  We have so many people supporting us and praying for us each day that we could take anything thrown at us.  But we weren't ready.  We are still enjoying this medicine that he can take from home, he can go to work, he can come home to Emmi and Colby at night and play with them.... we were not ready to give that up!!!   The nurse called us back to a room, and we sat there for an entire hour.  Every single footstep going down the hall would have us on edge.  The torture of footsteps coming towards your room is unbelievable!!!  Finally the nurse practitioner came in and delivered the most wonderful news we were not expecting..... EVERYTHING LOOKS GREAT!!!  We were so elated and shocked!!!! She said the scans looked even better than last time!!! So the plan is to keep on the Zelboraf, and hopefully ride this drug out for a very long time.  He is down at a half dose of this medicine, because the full dose is too toxic.  His kidneys are having some issues possibly from dehydration or toxicity of this medicine.  We are still trying to figure that out.  We are thrilled this is working, and are praying so hard for this to continue working at a half dose for a lot longer than 6-8 months.  It has been 4 months since he started this drug, and we are so happy for the time that we have on it that it works.   Thank you so much for all of your prayers!!! They are working.... even the Dr.'s are completely impressed at how fast and how great it is working on him.   We can breathe again!

Zelbor-off it for now

So Bennie had his monthly check up at MD Anderson this week, and it just so happened to have fallen on our 8th wedding anniversary.  At least we got to be together the whole day!  We are pros now at making any situation fun and enjoyable!  So he had his blood work, EKG, and his Dr. Appt.  MD Anderson is always full of surprises.  If you have an idea of how you think things will go.... It will always be the opposite.  Everytime.  So basically his blood work was a little off, and he has been having a lot of different side effects pop up in the last couple of weeks.   Some side effects have been painful joints, skin toxicity like acne and sunburns, fatigue, and elevated creatine. They decided to hold off the Zelboraf for a week, and then after they retest to make sure his levels are normal again, restart him at a lowered dose.  Most likely the dose he was on is just too toxic for him, and hopefully the lowered dosage will continue to work just as well.  Also, hoping he can restart next week and nothing happens this week while he is off of the pill.  It's scary when you think back at how quickly the tumors shrunk.... So hoping they don't regrow that fast.  We will keep everyone updated on the development of this story, and the upcoming scans in about 2 weeks!  We ended the day having a nice dinner out at the Steamboat House. It was an interesting  restaurant with a lot of Texas history, and a good steak.  We are so thankful for these past 8 years we have been married (almost 15 years since we started dating at the age of 15) and are looking forward to many many more!!!  

Happy, Happy, Happy

Friday before Memorial Day we were at MD Anderson getting Bennie's scans done to see how the Zelboraf is working.  This was our first scans since starting the Zelboraf so we were very anxious.  We knew that the tumor on his hip had shrunk, but we were unsure of how the lungs, liver, and bone mets were doing.  We were forced to wait the entire weekend, plus Memorial Day before we could find out results.  We kept busy by having a very nice weekend and enjoyed our time as best we could!  Tuesday morning we went to MD Anderson and got the fantastic results that Zelboraf is working magnificently!!!! Pretty much everything that were on the last scans were hardly visible, except for a spot on his liver, and some of the bone met on his hip.  The grapefruit (or larger) sized tumor on his hip almost completely disappeared.  The Dr.'s were very pleased and didn't suggest doing biochemo because of his fantastic response.  Before going into this appointment Bennie and I had decided that if there was any measurable disease on the scans that we would attempt to try and get into a very promising clinical trial going on at Sloan Kettering in New York.  It is the most promising treatment occurring in the melanoma world right now, and has the best chance for a long term response.  However, since there is no measurable disease at this time... we can't get into any trials.  So our decision was clear that we will just keep on keeping on with this drug, and hope that the response is a lot longer than the average life span of this drug which is around 6-8 months. 

We were so relieved to hear this news.  In other exciting news for the melanoma world two new drugs for the treatment of melanoma were approved by the FDA today!  One drug could potentially be added to Bennie's current drug to help with resistance, but really hasn't been tested with it.  Also, it would have to get approval from insurance being a new drug.... and without insurance its about 8000 dollars a month!  The quicker melanoma patients are given more options the better, because this cancer is nasty and takes people so quickly.  The one we are most anxious about is Anti-PD1 and is about one to two years away from FDA approval.  So hopefully the drug Bennie is on now can keep working until more treatments are approved, and researchers know more information on the best way to attack melanoma!

We couldn't have had a better visit yesterday, and are very happy to have good scans as well as confidence for moving forward in our current treatment.  We will be back at MD Anderson in about 8 weeks for more scans, and probably a little before that for blood work. 

At least the summer should be relatively "normal" around here, minus Bennie looking like he is dressed for winter as he is hiding from the sun!  Thank you for everyone's continued prayers!  We are still praying for Bennie to continue to respond super to this medication, and his cancer will be gone!  In the words of Phil Robertson... we are Happy, Happy, Happy!!!

Melanoma Awareness

Hi Everyone,

This is Bennie posting for the first time since this site was created. I just wanted to post on a couple of things that have happened this month. We found out that the brain MRI came back clear which is very good. This keeps me open for many clinical trials.

The pill ( Zelboraf) I am on has shrunk the tumor on my hip to the point were I can't feel it anymore. Which is awesome. We go for another CT scan next week on May 24th and find out the results on the 28th. I hope that it is doing the same to the other areas within my body as it has on my hip. So far the Zelboraf side effects haven't been to bad. I feel like an old man with arthritis that travels around my body. I also can't go out in the sun for more than 15mins or I get really sunburnt. My hair keeps shedding like a dog. Overall these side effects are nothing compared to the high dose IL2 treatment I did before.

On May 6th it was Melanoma Monday which is the first Monday of May. I want to thank all the people that supported me and all my fellow Melanoma fighters. It was great to see everyone wearing black in support of Melanoma awareness. In light of Melanoma awareness this month another blog Addison's Army has decided to post a story everyday for the month of May in hopes to raise awareness of Melanoma. Addison's Army is about a mother that found out that she had stage IV Melanoma shortly after giving birth to her daughter. The doctors told her it was very rare for cancer to transfer from mother to fetus and not to worry. Well in this case the cancer did transfer to the fetus and now the mother and child both have Melanoma. The mother passed away in February of 2012 and Addison keeps on fighting. My story has been highlighted on their site along with many others. If you want to shed some light on the dangers of protecting your skin from the sun and tanning beds then I urge you to read some of the stories.

Here is a link to Addison's blog http://addisonsarmy.org/

Here is a link to my Story on Addison's blog http://addisonsarmy.org/bennies-story/

Amazing

Some amazing things have happened in the last few days.  For about a week I will not lie that Bennie and I have been feeling really worn, and a bit of our hope had left us.  We have been getting bad news consistently since January, and Bennie had been getting really worried and anxious about biochemo coming up in a couple of weeks.  We got an appointment scheduled with Dr. Weber at Moffitt Cancer Center in Tampa, and we were really excited to get to meet with him about a second opinion.  A couple of days before we left I had the opportunity to meet with some ladies who have been praying for Bennie and I.  The hope of healing that had started to dwindle came back with the realization that the Dr.'s are not the ultimate healer, but rather Jesus is. 

So we got to Tampa late last night around midnight.  We woke up this morning and headed out to meet with Dr. Weber.  We got there and were immediately called back!  That never happens.  The first thing he said when he came in was, nice to meet you but I am confused.  He said, "I have read all of your history and am baffled by the fact that you aren't in a clinical trial."  We said we are confused too, that is why we are here!  He pretty much confirmed that biochemo was not a good plan, and would not be very useful.  Biochemo would decrease Bennie's quality of life so much, and there isn't enough scientific logic to support going through with it.  Biochemo is so toxic and the rationale for using biochemo right now doesn't add up.  All that to say his suggestion was to keep on the drug that he is on now, and stay on it until it is done working.  When it has run its life he says that is the time to jump ship and get into a clinical trial.  The time it could work could range from 2 months to 3 years or longer.  There are so many new and improved treatments and clinical trials that Bennie really should have been offered one in the first place after his first treatment failed.   What we saw at Moffitt today is what we envisioned MD Anderson doing.  Our Dr. suggested if we don't feel comfortable with our current Dr. then we should consider switching to another Dr. at MD Anderson.  At least we are connected with this Dr. and we can get to him at any time.  He emails back very quickly, and will answer any questions that we have with future treatment or options.  We feel a lot better!  We both had a pretty bad feeling about going forward with the biochemo, and he just confirmed all of our thoughts were valid. 

We felt like a weight was lifted off of our shoulders, and decided to see how long Bennie could last on the beach before getting torched.  (since one of the side effects of the drug is severe sun sensitivity)  Bennie lasted all of 20 minutes or so before we went back inside to find him sunburned.  So we decided to ex Universal Studios tomorrow before flying home, and we decided to just have a nice dinner.  I made reservations for 6:30.  Here is the next awesome part:  We met an amazing couple beside us, and he was telling us about his family that has been treated at Moffitt Cancer Center.  He was telling us about how great the Center is, and they even offered their home if we needed to come back here for treatment.  They were the most genuine and kind couple.  They got our names so they could pray for us, and we exchanged phone numbers.  When we were ready to leave and pay, the waiter came over and said that the bill had been paid for!  We were blown away!  Bennie called back to thank him and he just said you don't need to thank me Jesus just puts people where they need to be.

I truly feel that God has knitted some very important people this last week into our lives for a specific reason.  Prayer is powerful and I can see that playing out this week.  What we heard at Moffitt wasn't amazing brand new information news... its just the news that we needed to hear.  Its the fact that we can begin to feel confident for Bennie's treatment.  Its the fact that there are so many people supporting us on this journey, and God has placed these people in our lives for a specific purpose. 

So now we wait until Monday for Bennie's brain MRI, and then on Tuesday we get to talk to his Dr. to go over all of our concerns with valid points.... and a very reputable Dr. to back us up.  Hopefully she is in agreement, and if not we may need to try and get another Dr. 

Prayers for good results on Tuesday, and that our Dr. will be understanding.  Also, prayers for safety as we travel back home and pick up our little snuggle bunnies!

The Ordinary Life

The last two weeks have been somewhat ordinary.  It's the first time ordinary has been around since January.  Two weeks ago we got the big shocker that Bennie's melanoma had progressed to his lungs, liver, hip bone, and his hip mass grew very large.  They put him on Zelboraf, and he has been doing great for two weeks now.  He goes to work, comes home later, looks normal, and life feels normal.  He has some joint pain, his eyes are super sensitive to sunlight, and has a bit of a rash.... but we can work with all that.  We would give anything to have the ordinary life we had when all we worried about was how we were going to mow the lawn, and get to the grocery store in one Sunday afternoon.  We went back to MD Anderson today to see how he was doing on this new chemo drug.  They said he is doing great, and upped his dosage today to see if he can tolerate it alright.  The Dr. probably thought this was going to be a quick visit, but alas we had different plans.  For two weeks we have drafted pages of questions, and we were anxious to get all of our answers today.  We were so shocked last week that we left without asking any questions.  The Dr. wants to do biochemotherapy in May.  This is not typically done while on Zelboraf, and we were quite confused. 

1. Zelboraf only "usually" works about 4-6 months (some people have been able to stay on it for 2 years) before it develops a resistance and finds another way to multiply, and the cancer will grow back with a vengeance. 

2.  Zelboraf is working great for Bennie right now, and in 2 weeks his hip tumor has shrunk from the size of a softball or bigger to the size of a golf ball.

3.  Dr.s know this dramatic improvement will not last, but some studies have shown that breaks of Zelboraf can help in the developed resistance... which would give him more time on this drug that works

So our Dr. came up with the idea of combining biochemo, and during the weeks of biochemo Bennie would take a break off of the Zelboraf.  There is no research on this... which is why we were so confused.  Only one other person has tried it out and he did alright.  But we have to be confident in knowing this is a good idea.  So, we may go for a second opinion at Moffitt Cancer Center in Tampa, Florida.  They have done some great research out there as well, and it will be nice to get another opinion on if this is a brilliant idea.  We need to be confident in going forward in the best treatment we can get.... because we only have one shot.  Biochemo will stink!!!! ( one week in the hospital at a time, 5 different chemos, and feel really really sick/crappy)  If it works... we can deal with all of it. 

Our other question was what if Zelboraf/biochemo doesn't work... whats next?  Her answer.... "well it depends on what's out there at that time."  Good grief... I told the Dr. that she has 6 months to find a cure... and she better start working more overtime.  This was an exhausting visit.  We were both SO anxious, because we knew we would get answers that we didn't want to hear. We pray that we will decide the right treatment to move forward with, and that it will work!!! Melanoma sucks. 

An analogy for the day... There are many different treatments to try, but you have to pick the one that is going to work for you... and pick it in the time before your disease wins.  It's like trying to pick out the chocolate in the box of chocolates that you like the best before you get full.  And you hope you don't get all the nasty ones before you find the one you like! That's in a nutshell what we are battling right now. 

Also, praying that Bennie can handle the higher dosage, and that it keeps working really really good for a really really long time.  ALSO praying Bennie's brain MRI comes out clear in 2 weeks.  We appreciate all the prayers and support!!!

Don't Stop Believin'

Bennie and I came into Md Anderson laughing that we should change the harp music to a cover band of Journey singing Don't Stop Believin, or Queen singing We are the Champions. We left Md Anderson a lot sadder.  We got broad sided.  We knew his tumor grew a lot.  But we thought they would just come in and say... oh the treatment didn't work, but here is plan B.  Well they told us the treatment didn't work.  They also said he has many tumors in his lung, one in his liver, his hip bone, and his hip muscle tumor grew very large.  So. That. Stinks.  Then if we hadn't been sucker punched enough, they told us his cells they were harvesting didn't grow.  So surgery and chemo for 2 months was for nothing.  Wow.  So, the plan is now to start a drug called Zelboraf that targets the gene mutation he has for 2 months.  That is a pill that he can take at home.  The side effects for that can be a bad rash, severe sun sensitivity, severe joint pain, and probably others they just let you find out about on your own.  Then he will do biochemotherapy around the end of May.  He will get admitted for biochemo for a week at a time.  Then they will rescan and give us good news then.  You fall down twice... stand up three.  We are going to disregard this day, and enjoy Emmi's 6th Birthday and Easter.  We also told Emmi specifically that Bennie has Cancer and not just a BooBoo.  MD Anderson gave us a kit for her age specifically, and a social worker told us how to communicate all this with her.  She was crying yesterday when we told her we had to go to the Dr. this morning, and she seems to understand the conversation we had with her today.  They gave us emotion colored bracelets that we can wear with her depending on our day.  Praying that this new drug doesn't come with a truck full of side effects, and it helps really really quickly.  We aren't too devastated yet.  We still laugh, and have quite the sense of humor about this.  Once insurance says they approve this drug we will go pick it up from the pharmacy and wait and see what it does. 

We're Back

WE are back from Hawaii, and we are back at MD Anderson.  As I speak Bennie is getting his CT Scan completed, and I am in the waiting room listening to a lady play a harp.  It sounds like a funeral in here.  I don't want to sound rude, but I have been awake since 5am.... and I am going to lose consciousness with all this tranquility.  Tomorrow morning we will go to the Dr. and see what she has to say about the next step.  Unfortunately, we already kind of know his last treatment didn't work.  His tumor is about twice the size it was when we first started here.  So we are going in to tomorrows appointment with the probability of discussing the "Plan B."  Once we hear what that is we can plan for the future.  We have no idea right now what that is.  Praying that the treatment option provided will work, and doesn't have an impact on his quality of life.  We had a great time in Hawaii.  Bennie felt really good, and we got to do so much.  The kids were absolutely perfect, and pretty much did everything that we wanted to do.  We couldn't have asked for a better time.  We were so worried about the sun affecting Bennie, but it was pretty much cloudy everyday.  God took care of the sun for us!  We saw lava, went four wheeling, snorkeled, whale watched, rode a submarine, and just enjoyed every second of being together that we could.  Right now we just live day to day, and take every day that Bennie feels good with as much joy as possible.  We will be looking forward to celebrating Emmi's 6th Birthday this Saturday, as well as celebrating Easter!  Well I guess I will try and stay alert.... the people turned off the lights in the section I am sitting in, and the harp player has a play list of about 40 songs.  zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

Chugging Along

Bennie is still recovering, and heading in the right direction. He is still really tired, and his appetite is still in the process of bouncing back. He went to work for a little bit on Thursday, and when I picked him up (he's not supposed to drive for a week after treatment) he said he had a headache. He took some medicine for it, and it got worse really fast and then he even got sick from it. He was not doing good..and looked pretty bad. I was so worried, and also a little sad. It's hard to see him in pain, and looking that sick. Most days he is improving, but then you see him look so sick and realize what he is battling against. He went to bed at 6, and then woke up the next morning at around 7 am. He felt better. Last night I read the discharge sheet that you have to keep hydrated throughout the day, and eat throughout the day to keep blood sugar stable. His blood work shows he is anemic (normal side effect)... So not eating and drinking can bring on a bad headache. He doesn't really feel like eating or drinking so you have to bug him to do it. He was going back to work again, and so I texted Matt (bennies coworker and good friend) and asked him to try and throw him some crackers and water throughout the day.... So someone else could bug him for once!! Well Bennie caught on, and knew something was up at work!! But he feels great tonight, and thank you to Matt for helping Bennie with that today! Bennie was not about to stay home from work. He loves it, and can't wait to be there when he can. He seems to be back on the path to recovery, and now I think he learned his lesson that he just has to put in a little more care to his body. He is so sensitive right now to all that, and his blood is just off right now. We are still excited to leave Monday, but after seeing him sick the other night it has me a little on edge. Everything was going so good for a couple of days then went downhill. I'm cautiously optimistic going into this weekend, and just want to make sure he rests and takes care of his body! It's hard to make him do that, because he has so many projects and he's just a busybody!!!! He can't sit still, and never has been able to. Lucky for me, I always have someone to do my house projects for me. We had a relaxing evening watching Duck Dynasty tonight, and I haven't heard him laugh that hard in a while. I've never really watched that show before, and it was hilarious!! Well I will update again Sunday to let you know if Bennie survived his rest, and ill let y'all know if the kids are safe. My amazing father in law built a tree house (my dream tree house from when I was younger) while we were at the hospital last week. The kids are playing in it all day Saturday, and its about 8 feet in the air. If Bennie doesn't get sick again (which he won't because he knows his duties now) and the kids stay in the tree house (they will because their JuJu and Pawpaw will be playing up there with them) we will still be on a plane to Hawaii! My parents got to Hawaii on Wednesday, and said there are whales everywhere! When we get back he will get rescanned the following week to see if these treatments have helped. If they have.. He will get readmitted the next week for another round. If its not helping we go to plan B... Which we aren't positive yet what that is. Until that day we are just going to look forward to spending some much needed family time together!

Eagle has landed

We are home!!! We got home yesterday evening, and a day earlier! Bennie is doing alright with the normal side effects like itching, fatigue, weak, ect. The kids are so happy, and I Am beyond happy to be back home and with them!! All we have planned this week is blood work on Wednesday, and nursing Bennie back to his normal self. It is so nice to come back home to a bed, and sleep in it without nurses coming in every 5 minutes. Interleukin sure isn't fun, but Bennie is a strong guy to take it on. We got an itemized statement that shows how much was billed to insurance... For one week it was 152,000 dollars! Each bag of the interleukin cost 15,000 dollars. So the first week Bennie had 9 bags. He had the equivalent to a house infused into him. So that was interesting to see. Luckily our insurance is nice and approved to pay for it. One night to stay in the room costs 1500. I need to request a better chair for that amount. My own personal pillow top mattress, and Perry's steakhouse dinner should be waiting for me for that price. In other news, the Dr. said Bennie wouldn't be able to go to Hawaii. I almost fell over until he finished with the only way he could go is if you take me too. I was about to throw my shoe at him. All the Dr.s and nurses that we have had at MD Anderson have been wonderful!!!! Everyone is so nice there, and we have been lucky to have met some great people there. I have met a lot of people through blogs and support groups that have been so wonderful to me, and wouldn't be able to get through this without them. We are still so blessed by so many people helping us out everyday!! Thank you so much!!! Also, we are so happy that this last week is over, and we are still praying for a great recovery week so we can depart to Hawaii.

Round Two Complete!

Yesterday was really rough for Bennie.  He started off great, and insisted he eat a chicken biscuit from chic-fil-a downstairs.  So I got him one and he ate the whole thing.  His stomach was killing him afterwards, and ended up losing his breakfast right before I ate my lunch.   He was nauseated most of the day, and felt like complete poo.  He was itching and uncomfortable, and the worst was he couldn't get to sleep.  They gave him some Ativan yesterday which really helped him catch some zzzz's.  Then the next dose came a little late, and he got some Demerol which helped his sleeping.  The Dr.'s were concerned about some crackling in his lungs, and ordered some breathing treatments.  Then Bennie said he really wanted dinner, and thought of ordering a pizza and having it delivered to the room.  I of course remembered breakfast, and advised him against that.  He insisted, and I found a Chinese restaurant down the street to get him some fried rice.  I thought that would be way better than pizza.  He did well with dinner, and then got another dose of Ativan to help him sleep.  He went to bed at 8.  I went to bed at 10 after I watched a couple shows.  The Ativan wore off at midnight, and he woke up itching and completely stressed out he couldn't sleep and felt miserable.  So we waited for his next dose.... it didn't arrive until 2:45 am, and his Demerol helped him sleep the rest of the night.  Sleep was very minimal last night.  We woke up this morning, and he had a shower as well as a long walk around the floor.  The Dr. came by and said he wanted to wait for the seventh dose to make sure his morning was going ok.  He did another breathing treatment for his lungs, but the Dr. decided he didn't want to proceed and get into the danger zone.  So he is in recovery mode right now.  We will probably be here through Sunday, and pray his recovery goes smoothly.  I pray his lungs clear up, his fluid goes down, his stomach feels better, and his anxiety subsides.  He is having problems sleeping, and is agitated.  They really can't give him a lot because his blood pressure is low, and they don't want it to go lower.  So... he just took a Xanax and will hopefully sleep for awhile!!!!! He is most pleasant when knocked out, and when he is awake he is grumpy (anyone would be in his condition).  

I will keep everyone updated on his recovery!!!

Sleeping

Bennie has been sleeping a lot, and dose 2 and 3 went pretty good. He started with a fever last night, but Tylenol kicked it out and he got Demerol after each dose. He has started itching again a bit, but so far it's alright. Pretty quiet night here...so we will see what the Dr says in the morning. This time around is going sooooo slow. But I am thankful everything has gone good so far!!!!! Also my amazing friend, Tiffany, sent me an egg crate for my chair, snacks, drinks, her iPad with Friends loaded on it, and it was a nice evening last night. My parents brought up these supplies last night, and also brought me dinner, and it felt like Christmas!!! Bennie didn't eat last night, but I may wake up early and see if I can find something around here for breakfast that isn't hospital food for him. They need a Shipleys or something around here and he'd probably eat! My chair was amazingly comfortable last night!!! I feel like a million bucks. Bennie gets his fourth round at 9am.... Go Bennie!

Bennie 1 Interleukin -0

Dose number 1 went well this morning.  He started getting chilled then he got some Demerol.  He has been doing great today.  He ate breakfast and lunch and napped in between.  He is already starting to get a little red again, and his heart rate is higher than normal.  All these are normal side effects.  No fever yet today, and it seems to be going alright.  But I learned last time things can change in a second... so we are staying on top of the side effects and watching out for anything to combat as soon as it presents itself.  Dose number 2 will be here in one hour.  Hopefully his side effects aren't too bad... and we can manage the ones he has.  The kids are at PawPaw and JuJus tonight, and I believe they are working on building a tree house.  I cant wait to see them soon, and want to send out a special shout out to the grandparents.  We could not do this as easily if the kids were not completely comfortable.  We have NO worries, and know they are having a nice little vacation from their parents.  We communicate by Facetime and Skype, and are thankful for the current technology that allows us to keep in touch.  Wellll... that is all I have for now, and will give a short update this evening after the next dose. 

Prayers needed for Bennie's side effects to be kept at bay, and a pretty easy week ahead for him!!!!!!!!! 

Epiphany

I just had an epiphany!! So when you have a baby and you lay them down in their crib, and you go get them after their nap and they are drenched in sweat....why? I always thought there was something wrong with Colby. Why did he sweat so much? He's sleeping on a vinyl crib mattress! Holy sweat! I sleep on this stupid chair covered in vinyl and I wake up and feel like I ran 10 miles. If you could combine my sweat with Bennies heart rate during this treatment we could have run two marathons!! Anywho... It's a theory I just thought of and it may shed light upon why your babies sweat. Mattress pads and sheets don't help. I'm going to try and find an egg crate foam thing tomorrow. Going back to sleep now so I can sweat some more. It's so gross!! Don't worry I Lysol everything down so if you come to visit and have to sit in this chair you are good! Ha! I can write a book .... The chair chronicles... A series by Janet Lunsford. This could be a new weight loss marketing strategy. need to lose 10 pounds? Sleep on vinyl! Get your vinyl sheet today And sweat off your weight!!! You can thank the lady who woke me up to weigh Bennie at 3:30 am for this lovely random post. Back tomorrow with the treatment chronicles...starring Bennie Lunsford, with cameos from Demerol and Tylenol.

Second Round

Well we are in a room. We unloaded a whole trunk full of belongings which included an Xbox, clothes, snacks, blankets for 10, Hawaii Luau decor, cell phones, laptops, humidifier, and a whole house pretty much. We are both pretty anxious this time around, because the second time is usually a lot worse than the first. We are praying that's not the case, and praying for a quick recovery and easy week!!! That's all I have for now! I will update in the morning, and let you know how dose number 1 goes.

Living

So I haven't updated in a while, because there isn't really anything new to report. Bennie is doing great and is almost 100 percent just in time to get re-admitted tomorrow for round 2. We have had a pretty normal two weeks, and loved every second. Emmi isn't too happy knowing about this next week. However, we have had some blessings develop in the last couple weeks. Rewind back to September..... My parents decided to go to Hawaii for their 30th wedding anniversary. I was giving them a hard time telling them Bennie and I would be turning 30 too. They thought it would be fun for us to go too, and it would be great for us to have a nice trip together. We haven't had an alone trip since we got married.... So we were so excited. We had Bennies 30th birthday party, and it was a Luau theme to celebrate our excitement. My parents had bought our plane tickets, rented a house for two weeks, had all the activities planned, and then January comes. When the Dr. was talking to us about Bennie's cancer treatments the first thing he said was can I still go to Hawaii? In our minds we had completely written off the idea that we could go. Ultimately the Dr.s said yes... They want people to go. When you have a diagnosis like this there are far too many people who fight to live but don't live while they are fighting. So the Dr. encouraged him to keep his plans, and even said they would reschedule anything around it. I was worried about the plane ride, but the Dr reminded me that people fly into Houston from all over the world to get treated at MD Anderson...and have to fly back afterwards. There are hospitals in Hawaii if anything comes up. I have even met a lady whose husband started the same treatment at the same time, and they live and are getting treated in the same town we are visiting. So, hopefully we can meet them when we go. So, before Bennie got diagnosed we were going to go to Hawaii alone, and leave the kids. We were already wondering how we could leave the kids for 7 whole days.... But we have had to leAve them now for 7 days while Bennie was in the hospital, and now for another 7 days next week. There would be no way we could go without them, and so they are coming too!! They are sooooo excited. This will be the first plane ride for Colby, and the first plane ride Bennie and I will go on together. So we are praying so hard next week goes off without a hitch, and we can get outta here!!! We are scheduled to depart two weeks from Monday. I am going to decorate Bennie's hospital room in Hawaiian things to lift his spirits when it gets tough. We couldn't pass up going on this trip.... It's our birthday and Christmas presents from my parents for the next couple of years! Hawaii is not the best place to vacation when you have skin cancer and sensitive skin, but we have to modify our activities and protect his skin with SPF shirts and a touristy hat!!! And Bennie is worried if the cancer does get worse instead of better, he may not be in a condition where he would be able to enjoy it like he feels now. Right now he feels better after a week or so, and he would rather be recovering in Hawaii than the couch at home. So, like the Dr said "if you are going to fight to live....then live!" We are going to live!! When else would we get a paid for vacation to Hawaii... Unless my parents choose not to come back!! I'm glad that my parents are taking us to Hawaii.... They have been to Spain, Germany, half of Europe, California, Pittsburgh, and I'm forgetting some others I didn't get invited to in the last two years. I guess they saved the best for me! Wahoo! My cousins Brandon and Jen are coming too!! They live in Dallas, so we don't get to see much of eachother.

Bennie gets admitted again tomorrow, and most likely will get his first dose on Tuesday morning. We ask for prayers for an uneventful week, and a fast recovery!!!

Thank you, and I will keep you updated daily now. (Also I typed this from my iPhone in a blogger app... So there may be a lot of grammatical errors)

Home sweet home!

We are finally settled in at home, and Bennie is improving each day. The first day we were home Bennie slept a lot, and was still itching very bad. We found that Aveeno oatmeal baths and sarna anti itch lotion seem to work well in helping sooth the skin. The medicines he takes for the itching make him so tired, and he wants so bad to stay awake. He is still really wiped out....but each day he is able to do more and more. We have still been so blessed by so many people supporting us with prayers and meals brought to us each night. It is just so awe-inspiring to us!! We are looking forward to a bit of normalcy for the next several days. Bennie doesn't find my life as a stay at home mom as exciting as his job at work! So as soon as he can stay up for more than a few hours at a time I'm sure he will be racing back to work! Tomorrow
I have to drive him to the satellite office to get some blood work done to make sure everything is still going in the right direction. I know he is starting to go in the right direction, because he is wanting to play Xbox for a bit in the evening. Normal Bennie is emerging!!!

The white flag has officially been waved!

Well... Bennie completed 9 doses of this treatment which was quite a feat. The Dr. Came by and said he looked good, and that if he wanted to do one more he could. Bennie said no way ... If I do one more I will die. I agreed with Bennie ... One more and he would be in for a world of trouble. It was pretty rough, but I was so excited for Bennie to begin his recovery. In my mind I thought that Bennie would be coming off the medicine and start to return to his normal self in a few hours. It then hit me how sick he was when that evening he still was completely out of it, and flat out miserable. His throat was hurting so bad from thrush that is a side effect from treatment. Also, he was itching terribly from the sunburn looking rash all over his body. We tried to get these side effects treated, but as of today he is still suffering and still out of it. Normal Bennie is not back yet, and he has slept for the past two days straight. I was sad because he was a little grumpy, and not his normal self who I missed so much. It is sad when you try to do everything to get the person you love to feel all better, but nothing works. I learned it just takes patience!! He endured one of the toughest cancer treatments out there, and it will take time for him to bounce back. He will be back to Regular Bennie in no time. I am praying tomorrow is better and we are able to get home! Its funny to talk to him, and you think you are having a great conversation.... and look over and he is passed out! I got to go have dinner tonight with the kids while Barney sat at the hospital with Bennie. I loved having some time with them, and miss them sooooooo much!!! They are starting to have a tough time and cried to see daddy when they dropped me back off at the hospital. I promised them we would be coming home soon, and hope tomorrow is the day so bad! Bennie is finally free from all the monitors, and I am hoping we get a good nights rest without all the alarms from the machines going off.

A lot more doses later

Bennie has been a trooper.  Each dose causes Bennie to decline more and more.  He is sleeping most of the day now, and is really kind of in a fog.   Today he has received doses 6, 7, and 8.  We almost had to hold off on some today because his Uvula in the back of his throat swelled up quite large.  It is making him really uncomfortable, and he can barely eat or drink. It caused quite a scare because we were not sure if it was his whole throat swelling, or just that part.  It seems it is a cause from all the fluid retention.  Some people swell up in their legs and hands, but Bennie swells up in his face and Uvula.  He has gained probably about 10 pounds or more from the fluid, and as soon as the doses are finished that will all come off.  One of the side effects is called capillary leak syndrome.  It basically is caused by low blood pressure, and the fluids that are being pumped into him are not able to come out.  So... between his fast heart rate and the swollen throat we almost had to hold off, but he said bring it on and they brought it.  The Dr. will call tonight to see what his stats are, and will determine if we are going to go through with the next dose.   Bennie is ready for the white flag to be waved on this treatment for the week, but he is ready for the next one if need be.  It is so hard to see him look so miserable, and out of it.  Luckily, once all these medications stop they say you bounce back relatively quick?  Hard to imagine that currently, but we shall see.  Thank you so much for everyone who has come together for support for us, and for the prayers.  He reads all of the encouraging posts on Facebook, and we would not be able to get through this if it wasn't for all the people behind us right now.  There have been so many people who have helped us out, and we are tremendously blessed by each and everyone rallying behind us.  We did get a nice surprise today.  The nurse said that kids are able to visit here, and Judy brought them up to visit for awhile before his 8th dose.  We loved that so much.  We have never been away from them for this long, but they are taking it very well.  They were sad to leave the hospital without Daddy, but I think it helped for them to understand where we are.  It was just what we needed to drive us through to the weekend, where hopefully we will get to leave.   PLeeeeaaase let us get out this weekend!!!!!!!!!!!!!!!!!!!!!!!!!!  One day I am going to invent the neatest, and most comfortable fold out chair for guests staying at the hospital.   I am going to corner the market with this chair, and all Fathers who have to stay at the hospital when they have newborns will thank me.  There will be a holiday named after me for the invention of this chair.  I will have a lot of time to invent this chair, as I sit here trying to get comfortable in the current hospital chair. 

Dose 3 and 4

So we are down 4 doses, and there are a max of 10 more he can do.   The number of doses will be determined by how is body is handling each one.  If he shows signs of organ failure or intolerable side effects like hallucinations or inability to eat/drink then they will cut it off.  So far so good.  Last night was a bit rough.  The chills, called rigors, were pretty bad for about an hour.  He shakes uncontrollably until Demerol has a chance to kick in.  He got pretty nauseated and sick last night because they gave him a lot of Demerol and also Diludad to calm the shakes.  After the nausea medicine came he slept the rest of the night.   The Dr. came in this morning and said he looks great, and his blood work looks great as well.  He was not able to have any Tylenol around the clock yesterday because of some blood work issues, but he is able to have it all day today.  Hopefully that will help with the fevers and aches.  Dose number 4 came this morning around 9:30 and we were bound and determined to get the Demerol at just the right exact time to stop the chills in their tracks.  So, I noticed his very first dose his hands felt like ice blocks and then he started with the chills.  I noticed the same thing this morning, so I ran and got the nurse and she dispensed the Demerol.  NO Shakes!!! He slept and was a little out of it, but no fever and no shakes!! So hopefully the next dose we can still stay on top of it, and also the Tylenol will prevent him from the high fevers.  So..... all in all everything is ok.  NO stomach issues today.  He has been eating and drinking fine the whole time.  He is doing great!!!

He loves the encouragement and prayers, and we will update later tonight on the next one.

Dose Number 2

Well the honeymoon is over.  Bennie had a great day today, but about an hour before dose number 2 came he started getting a fever.  Then dose number 2 was administered, and everything just went south from there.  His fever spiked to 103, his blood pressure shot up to 200/90, heart rate was around 150, and he was shaking violently from the chills.  It was scary for awhile.  As soon as he starts getting chills the nurses have Demerol ready, and that will usually help pretty quick.  Since his fever was so high the Demerol didn't really start working for an hour.  Finally they gave him some Tylenol and he is starting to come around again.  He got his xbox connected tonight and seems happy, but he needs to get some rest before Dose number 3 comes at 1 a.m.  Hopefully his fever goes all the way down before that comes.  And hopefully it isn't as bad as last time.  It is really hard on the body shaking like that.  It is scary not knowing what will happen to him from dose to dose.  He seems ok right now... so that is Dose number 2.  Bennie wants me to write all of this down, so the next time he comes in he knows what happened and when to have all the medicines ready.  Whew that was a stressful couple of hours.  Luckily all the nurses here are wonderful and so nice and helpful.  I just ordered Bennie a little bit of dinner, so hopefully he can stomach some of that and get some rest. 

I keep checking on Matt next door, and he has been asleep all day.  I hope he is comfortable. 

Thanks again for all of the prayers!!!

Now here we are:

I never really ever dreamed that three weeks ago we would be sitting here on the 10th floor of MD Anderson, while nurses come in with hazmat suites on dispensing highly toxic chemicals to my husband.   Whatever God's plan is for this certain set of events in our life, we are just trusting him and giving it all to him to take care of.  We know it will be tough, but we know we are not alone.  It is amazing to think that Bennie has stage 4 Melanoma.  He looks fine and feels fine... minus the large growth in his body.  When you look up Melanoma on the internet it is very frightening.  The odds for someone to survive past 5 years with this disease are 5%.  But Bennie is not a statistic, and treatment options for this cancer are improving every year.  Even with this horrible thing that has been placed in our laps the blessings that have been presented to us in these last few weeks are amazing.  One blessing is that even though it is stage 4, we found out that none of the scans showed any metastasis in his organs.  Also, we were able to get everything streamlined pretty quickly to start treatment.  Another blessing is that our children are taken care of so well by all the family that we have.  We have such an amazing family and support system, and that helps so much with us being gone so much.  Our church family is also amazing, and everyone praying for us is just astounding.  Another blessing is that Bennie works for the most amazing company.  He absolutely loves his job!!! The hardest part for him having to go through this is not being able to go to work.  He loves the people there, and he loves what he does.  It is killing him to be in a hospital bed, and not doing what he loves.  We know he will be back soon, and that this will just be a memory in the future.   He is still able to be connected through work with technology, and may confuse some people when he responds to emails while on Demerol.   The side effects of this treatment can be fever, chills, nausea, diarrhea, rash, itching skin, kidney failure, blood pressure issues, and fluid retention.  This is a short list, and the long list of side effects they gave us would make anybody want to try and escape this room before they bring it in. 

Bennie Just had his first dose of the hi-il2:
9:00 am the nurse came in and hooked up the transfusion
9:15 am transfusion complete
9:30 am I stare at him ... he watches a movie
9:45-10:00 He gets really cold and starts shivering... we get the nurse and she gives him Demerol
10:30 he feels better and is watching TV

Pretty good first dose so far... will keep everyone updated... next dose 5pm

P.S.
It's really weird... a friend of ours from church that we have known since high school at church has the same diagnosis.  He just moved down here from Virginia and was starting at MD Anderson for treatment as well.  It just so happened that he started the same day, and he is right next door.  He is in room 1 and Bennie is in room 2.  Such a small world, and so that means I can take care of two people!  I just went and checked on Matt, and he was asleep.  He looks like he is having a rough time over there.  I will go by in a little while and check back up on him.  He is receiving a different treatment that Bennie.  That's all for now!

In the Beginning

Here is where it all began.....

November 2005:
Bennie has a mole removed from his left arm, and it is determined it is a Clarks level 3, 0.98mm malignant melanoma.(stage IIA Melanoma)  After surgery at MD Anderson and a Sentinel Lymph Node Biopsy everything comes back clear.  We follow up at MD Anderson over the next 5 years for check ups, and everything is great.  We follow up with a dermatologist after 5 years of being cancer free. 

January 6th 2013:
Bennie wakes up before church and tells me that Colby has got to sleep in his own bed from now on.  He thinks that Colby is kicking him in the side at night, and is causing his hip to hurt.  He then feels a bump and blames it on Colby.

January 10th 2013:
Before bedtime Bennie shows me the bump on his hip, and it is noticeably larger.  I freak out over the size of this thing, about the size of a softball, and surf the internet all night looking for answers.  The only answer I could come up with was cancer.  I was already sad, and I cried that morning to him.  In my heart I knew.  He said he would give it a couple weeks, and then go see a Dr. if it didn't get any better.  Well... I got him in to see a Dr. that next week, and after a MRI he was sent back to MD Anderson.

January 22, 2013
We end up at MD Anderson, and run through a battery of test in 2 days.  He gets a CT Scan of chest/abdomen/pelvis, MRI Brain, and biopsies on his hip tumor and also one on his shoulder.

January 31, 2013
Bennie has surgery to remove a tumor on his shoulder.  They remove the tumor to harvest the Tumor Infiltrating Lymphocytes for a future treatment possibility.  It is a rough treatment so hopefully we do not have to go that route.  But it is available if need be, and it does have better odds than the first treatment we will be starting.  The first treatment we will be starting is HI dose of Interleukin 2.  He will be in the hospital for one week, and every 8 hours he will be given a 15 minute infusion.  The side effects can be really rough, and it feels like you have the worst flu ever.  Luckily, supposedly after you finish the infusions you feel better.  The chances of this treatment working for a complete response or cure is 6%, and the chances for it helping to keep it stable are about 10-15%.  Not really great odds, but it is the best they have right now.  The TIL treatment is not an option right now because they have to grow those cells from the tumor, and it takes about 5-8 weeks for them to grow.  We do not have that kind of time to wait around, because melanoma is a very aggressive and fast spreading cancer.  WE know that because of the tennis ball or larger size tumor on his hip.