more sean

Hi all, I just wanted to give you all the link to our dear friend Mike Warholic's website. On the website is a fabulous tribute to Sean and his whole philosophy on life. Please check it out if you have some time.

http://www.mikeaholic.com/

Enjoy!

my greatest thanks

The past few weeks have, no doubt, been quite difficult and definitely a rollercoaster ride, but I wanted to thank all of you for being so loving and supportive and trying to make this time as easy as possible. I could not ask for better people in my life to help me through, what will absolutely be, the hardest and most painful thing I will ever go through. That said, the past few weeks have also been quite amazing in their own little way. During Sean's last minutes he was blessed enough to have his entire family right at his side to help him let go. Those moments were like life beginning, they were so peaceful and so calm, with no suffering, and it was amazing.

Then we held two spectacular gatherings in Sean's memory full of music, photos, and friends, without a doubt something Sean would have approved of. Thank you so much to all of you who were able to make it to either the gathering in MD or NY, it was nice to see so many faces there for such a wonderful man. Finally, last Sunday, April 22, we took Sean's ashes along with his dog Snow's (who passed a few years ago) ashes to Main Beach in East Hampton. Our good friend David Lys and Sean's brother Conlon kayaked out past the break of the waves and scattered both sets of ashes in the ocean. Meanwhile, on the shore, a bagpiper played "Amazing Grace" and those in attendance shared stories and kind words about Sean. Sean would have absolutely loved the ceremony. It, again, was quite amazing. The photo above was taken during the ceremony and I thought that I would like to share it with you all.

I just wanted to take a minute to thank all of you for all that you have done. Everyone has gone above and beyond and made every effort to make this transition as easy as possible. Finally, I wanted to thank anyone who has made a donation to either the American Brain Tumor Association or The Carabine Fund for Iraqi Children, your generosity is greatly appreciated.

I hope that you will all continue to check in to the blog, I think that I am going to keep it going as it has been a very nice outlet for me and an easy and fun way to keep track of the details of life that slip away from you after a while. So please check back frequently.

donations in Sean's honor

We are asking that if anyone would like to make a donation in Sean's honor, please make it to either of the following organizations. Thank you in advance!

The American Brain Tumor Association
http://hope.abta.org/site/PageServer

The Carabine Fund for Iraqi Children
http://carabinefundforiraqi.tripod.com
This is actually a fund that was setup by Sean's sister-in-law TracyAnn in Sean's honor to send schools supplies and soccer balls to Iraqi children. At this point, the site does not accept online payment, so please write checks (Payable to "Carabine Fund for Iraqi Children") or cash and this can be brought to the memorials or given to a family member.

Either organization is fine, both were places that Sean supported.

memorial gathering for maryland

There will be two memorial gatherings for Sean. One will be held in Maryland this week and another in New York for his family and friends outside MD. Details on the NY gathering are still being worked out and will be shared when they are finalized.

Here is the information for the gathering in MD:

Wednesday, April 18, at Connelly's Funeral Home at 7110 Sollers Point Rd, Dundalk, MD 21222.

The gatherings will be from 3-5pm and 7-9pm.

IMPORTANT: We are asking that everyone think of their favorite "Sean story" and bring along a typed copy of that story as we are compiling a book of these memories. Feel free to include more than one, if you simply can't choose!

On behalf of Sean's entire family, and especially myself, thank you all for your continued love and support. We could not get through this without each of you!

love, Stephanie

our beloved boy

Sean has gone on before us.

Cpl Sean F. Carabine USMC(Ret)
29 March 1972 - 13 April 2007

A fabulous son and a fabulous person.


Two quotes that apply to Sean:

The Warrior Creed

Wherever I walk, everyone is safer.

Wherever I am, anyone in need has a friend.

Whenever I return home, everyone is happy I am there.

By Robert L. Humphrey
Marine Lieutenant on Iwo Jima


"The republic is a dream. Nothing happens unless first a dream. That's what makes us as Americans different. We've always reached for a new spirit and aimed at a higher goal."

by Carl Sandburg

Here are a few pictures of Sean with Brutus. Mark, the nurse in ICU, arranged for Sean to go outside in the sunshine to see Brutus. It was wonderful to see.

more news

This is actually Stephanie...I've stolen a few minutes here this morning before I head off to relieve Conlon and TracyAnn at the hospital.

Yesterday was a big day. We met with the whole team of doctors and social workers and care personnel first thing in the morning to determine the next steps. The neurosurgeon and his team of radiation specialists and oncologists came to the conclusion that based on the severity of the tumor there are no further treatment options that they can offer. So we needed to determine what we wanted next for our boy.

After long talks with the team, we (myself, Conlon, TracyAnn, & Brigid) decided that we would like to take him off the ventilator and leave Sean in God's hands. So we contacted all of his local docs and got their opinions and filled them in on the situation and then brought the plan to Sean, to which he did agree. The breathing tubes came out and he is left to breathe on his own, only being made comfortable by the nurses.

He is on a 50% oxygen mask and last night when I left, his pulse-ox rate was 91 which is pretty good. Last night they moved him to the 5th floor and out of ICU since he is stable. Depending on how long this takes, he will remain in the hospital for a few days and then, if necessary and if he remains stable, he will be moved to a separate end-of-life care facility.

Yesterday when Sean had awakened a bit more, all he kept asking was "Where's Brutus?" and was really wanting to see him. So our nurse arranged it for us to be able to bring the dog to see Sean. The nurses took Sean to the ER entrance and Brian brought Brutus from home. It was so nice for Sean. He was very happy to see him and pet him and Brutus was very happy to see Sean also. I have some pictures, but am hesitant to post them because Sean does look a little worn and I don't want to surprise anyone. If you would like to see the pics, leave a comment and I will have them posted in the next update.

Right now, we very much appreciate all of your love, support, and prayers. Sean is a fantastic person and it is always amazing to me how many people love this man. My dad said last night..."If you spent only four hours with him, he was your best friend for life." And it is so true. I have only been so lucky to meet so many of you and so many more wonderful people through him. And I never really understood the connection he had with everyone but I am ever so grateful for it. Please continue to keep us in your thoughts. We love you all!

Update

Well, this is Jackie. I'm in charge of updating for right now.

So, yesterday morning Sean was having problems breathing, so they moved him back to the ICU. There is also some thickening of the right lung and some infection. They think that it could possibly be aspiration pneumonia, but are not positive. He started antibiotics yesterday evening, so if it is working, we should start to see signs tonight or tomorrow.

They put in a main line to access blood easily and to administer the antibiotics. This morning they put a temporary shunt in to relieve fluid pressure from the brain. It didn't really do much, so that is not causing the breathing problems. Since his breathing problems were not improving, they put him on a partial respirator. We just received the word that he is going to be intubated. He will not need the mask, which he hates anyhow. The mask was keeping the fluid in his lungs, so this will help get rid of that as well. Conlon explained everything to him, and he understood and agreed.

The doctors will be in tomorrow to have a meeting with Stephanie to go over the options and make some decisions. So, hopefully we will have more information tomorrow. The hospital is great and we are relieved he is here.

latest news

Hello this is Courtney[ Stephanie's sister] and I will be updating the blog until they have time to get to the computer.

The past couple of days have been very long and exhausting. Steph came to our house on Wednesday to give herself a break. Bert was home with Sean. Sean told Bert to call Steph and tell her to come home. Then he decided he wanted to call the medics. So he was taken to Harford Memorial Hospital. Stephanie and mom met them there. They had a very long night and day in the ER. Thrsday afternoon the doctor came in and told them that they wanted to send him to University Hospital in Baltimore to have surgery. The tumor on the brain stem has grown and there is a chance it could hemmorage. He was transfered yesterday around 4. when Stephanie and Mom got there Sean looked like a totally different guy and he still had a smile on his face. He was happy to be there and knew that he was making the right desicion. he did plenty of tests at Harford and after he got to University he had a CAT SCAN and an MRI. Stephanie came home with us last night so that she would be closer to the hospital. Sean was very comfortable when we left him last night. All of the Carabines are here or on there way. Please keep all of them in your prayers. Thanks for all of the support.

and the celebration continues...

Last night we had everyone over to celebrate the March birthdays in our group, and we had a full house!! It was wonderful!! Zach, Stacie & Simon, Bert & Leah, Jay & Jackie, Mitra & Andy, Mike & Kristy, and Dan Fox were all here to celebrate with us. This is something we look forward to every year and next year we will definitely be doing something BIG again (like our first celebration in Vegas!) Last night we kept it low key and had Outback Steakhouse for dinner at the house, ice cream cake, and games (of course). This was a big year for birthdays: Mike & Sean turned 35, Zach turned 30, Leah turned 21, and Jay & I turned 27. We had such a great time last night and it was really nice to have everyone come to visit and hang out. But now it is a new month and I guess it is finally time to stop celebrating our birthdays for this year!

happy birthday to us!

Well it is that time of year again....our birthdays!! Sean and I are very happy to be celebrating our birthdays this week. The festivities started with our annual family gathering at the Parto's on Sunday. And of course, Jay was there to also celebrate his birthday (3/18). We had a wonderful time and were both very grateful to be able to get out and go to the party. Sean had a great day and it was definitely a confidence builder, so maybe next time will be a little easier to go and visit.

Right now we are enjoying the extremely warm weather on the back deck. It is about 70/75 and breezy which feels fabulous! We are hoping that this evening when Bert gets home from work we can go out for a walk as long as the weather holds up!

Sean is doing really well. He is spending more time awake during the day, which is great, we have been able to watch a lot of good movies lately. Last night he decided he wanted to sleep on the sofa bed with me, so he did! He is keeping positive and looking forward to starting PCV again. We meet with Dr Hou and Dr Raj on Friday and get the results of the MRI and start new chemo. We don't expect that this MRI will show much of anything or be much help, since it is a different machine than the last MRIs and we are pretty much looking at this scan as a baseline.

We hope that everyone else is enjoying warm weather and happy days!

so nice

Yesterday was so nice here at home that Sean decided he would like to have lunch on the back deck. It was over 60 degrees and it was super nice to get out of the house for a little bit. We are getting ready for the next few weeks. We have developed a new "schedule" to better organize our days and are looking forward to Sean's rehabilitation in the next few weeks. Yesterday we also celebrated Leah's birthday with a Serendipity themed evening. We ordered dinner from The Outback and then watched the movie Serendipity. During the movie, we enjoyed our wonderful Frozen Hot Chocolate that Brigid got us for Christmas. I also ordered a gift set for Leah so they could enjoy with us! We had such a fun evening! Hope everyone is having a great weekend and enjoying the warm weather!

look out world....

Sean is making a lot of headway with his recovery. Every day is something new and exciting here at the Carabine home! Gosh, where do I start? Sean did a week and a half of physical therapy outside the home, and it is a lot of effort getting him in and out of the car to get him to PT. Sean decided that he would rather use all of that extra effort actually doing physical therapy and recovering, so we have decided to use the exercises that David and Rachel gave us and we have asked them to help us with exercises that we can use as Sean progresses. We are taking this route for the time being and could possibly go back to outside PT as it is easier to get Sean in and out of the house.

Sean had acupuncture today in the house, which was awesome! The acupuncturist agreed that the chinese herbs are the best thing for Sean right now and will be in contact with his chinese doc about what she is doing in acupuncture and the chinese doc can then tailor the herbs to aid what the acupuncturist is doing. She will be coming in at least once a week.

Through the VA, Sean qualifies for 10 hours a week from a home aide. We got a call today from the home care agency and they will be coming Friday to evaluate the situation and by next week we should have someone coming in to help out during the day. This will be huge because it will give me a little time during the day to get some things done around the house.

What else? What else? We have an appointment with Dr Raj on Friday. I don't know how much information we will get from the appointment as we are not going to have an MRI beforehand, but it will be good to see Dr Raj and get her take on the situation.

Bert and Leah are still staying with us, which is wonderful. They are both so positive and encouraging and make our days so enjoyable! Bert is helping out a lot with physical therapy, which makes a huge difference, and Leah is so sunny and positive and Sean loves having her smiley face around!

Everyday Sean is getting stronger and is able to do a little more. This week has been great as far as improvements go. Two nights ago, Sean walked the length of the couch with the walker and some support from Bert and I. He is able to sit up on his own, his upper body strength is getting so much better. He fed himself dinner tonight and took all of his pills on his own today, which means his coordination is improving also. His speech is improving and he is talking a lot more, not just about the things he needs, but he is pretty much talking whenever he is awake. He is spending a lot more time during the day out of bed, watching TV with us on the couch, sitting in the massage chair, and eating at the table. His goal is to be up and using the walker mostly on his own by our birthdays. What a great present that will be!!

We are so blessed to have so many people rooting for us and supporting us. We are so grateful for all of the prayers and positive thoughts that everyone has been sending our way. Please keep 'em coming!

moving forward

Today has truly been a great day, and evidence that prayers do not go unanswered! Sean had a great day, even ate dinner on his own, holding his own fork, which sounds so minor, but really is an accomplishment. We were blessed to have our dear friends David and Rachel Lys come to visit today and, since they are both in the physical therapy field, were able to spend about two hours giving us exercises that we can do together and some that Sean can do on his own. It was so wonderful to see them and their beautiful baby Brighton and we felt so excited to be getting some help that is really useful.

Prudy and Brian worked together to find a physical therapist today and contacted a local VA office, where we spoke with a very nice gentleman who is going to put us in touch with a physical therapist and, if necessary, transportation, and a counselor. Sean rates a lot of free services because he is considered 100% disabled through the VA.

And, finally, we spoke to Dr Raj, Sean's oncologist, this evening and she is calling in the prescription for Tamoxifen so we can start it tomorrow. This is a drug that is primarily used for breast cancer but has been used to treat other types of cancer also. This is a drug that we have not tried yet and are very hopeful about. One of the major side effects of this drug is blood clots and with Sean's level of activity and being on testosterone, which also contribute to blood clots, Dr Raj has decided to also put him on a minor blood thinner, just in case. So he is thrilled about this.

We did hear from our nurse practitioner at NIH this morning and she said that she received the radiologist's report on last week's MRI and that the results "are not good." We will receive this report tomorrow. Regardless, we kinda expected bad news and we've been preparing for that, so it was no news that we were not already expecting.

Overall, we are so grateful for all of the positive thoughts and prayers that have been sent our way and we are incredibly blessed people to have so much support and love around us on a daily basis. We are moving forward...

what a weekend

Well, there's no beating around the bush here. We went to NIH on Friday for chemo and the docs wanted to see Sean about his chest congestion to make sure he didn't have any infection that would prevent him from receiving the chemo. There was no infection, but the doc was not pleased with Sean's physical state. So he sat us down and informed us that he feels as though it is time to update Sean's will and sign a power of attorney. He feels as though all of Sean's physical symptoms are tumor-related and that there is no further treatment he can give him at NIH. So that is where we are with NIH and our docs there.

Now, you have all met Sean and know that he is "hard core" and a very determined individual. He is convinced that this is something that can be beat and he is the man for the job! So we are researching all of our options, traditional and alternative. Of course, he is still taking chinese herbs twice a day and we will be visiting the chinese doc by the end of the week or next week. We have a neighbor who practices Reiki, which is a Japanese healing therapy that Sean really enjoys so we have her on-board. We have also put a call in to a physical therapist that Lauren recommended.

So we have an MRI on Thursday, and are anxious to see what it shows. We are scheduled to have an evaluation of the MRI at NIH on Friday, but we haven't decided whether we are going to go for this or not. We may just go see our outside oncologist instead and seek further options through her. There is a drug that we have not tried yet that we are looking into and discussing with the docs.

We are hopeful and Sean is not done yet, he has told us that he has a lot more left to do. We are staying positive and appreciate all of the positive thoughts and prayers that everyone is sending our way. They make such a difference.

oh boy!

Well it has been a challenging few days here at the Carabine residence. We have been trying to get a nurse lined up, and just when we thought we had one, they called to say that they are having staffing problems and cannot help us at this time. We are getting the runaround from the docs and feel like we are running in circles! It's not helpful when the doc handling your case is only in the office three days a week and when you have as many hands in the basket as we do, it makes it even more complicated. Yesterday we were blessed enough to have Bert and Leah come over and Leah and I were able to run some errands while Bert sat with Sean. This was very nice! But having an easy day just isn't in the cards for us yet, so last night (this morning really, it was 1am!) Sean's tummy gave us fit! Not sure if it was the chemo (or the Burrito Ultimo he had for lunch!) but either way it led us to a sleepless night and lots of cleaning up! But this morning we woke up to more of this darn nurse business, which is still not straightened out, but I have calls in to everyone involved, and Sean is feeling better after some breakfast and good ol' Gatorade! Keeping our heads up...

we have lift off!

Yesterday we spent 10 hours at NIH getting consents signed and getting the Avastin and CPT infusions. The day was very long, but everything went great! The nurses were able to get good blood lines, quick urine samples, and the infusions caused no problems! So far, Sean has yet to experience any of the side effects of the CPT, which is awesome (diarrhea and vomiting did not sound like something that would be friendly to a person with limited mobility)! So we have enjoyed a day of rest after our day out yesterday. We are in the process of lining up a home care nurse to come in and help out, make sure that we are doing everything right, and give any additional ideas on how to make life easier. We are also going to have a physical therapist come in and help do some patterning exercises with Sean and get him moving again. So there are quite a few things on the horizon and we are looking forward to moving on and making some progress. Thanks to everyone for being so understanding, sorry for any of the calls that have not been returned, or returned late, and updates being scattered. We are trying to create some sort of balance in our lives, which has been challenging, but I think that we are making improvements everyday and making it work for us!

new tests and trials

I have never really felt as though God was testing my strength and will, however, a new day has dawned and this is like the final exam! Yesterday was Sean's monthly appointment at NIH with Dr. Fine. The morning started well, but then getting Sean to the car and in the car was quite a challenge. I hadn't realized just how difficult it was going to be for Sean to get out of the house until we tried it. The steps were a problem, but getting into the car was an even bigger problem! Finally, some of the neighbors came out and lent us a hand and it worked like a charm. So after that the rest of the day went off without a problem. Dr. Fine says that the MRI showed more growth in both the cerebellum and the brain stem, however, after looking at the scans (which came from two different scanners and were two different sets of pictures) I couldn't see much change. Either way, the docs feel as though the Avastin has begun to flatline so they are going to put Sean on a "new" trial. This next step will be adding a drug, called CPT-11 to the Avastin treatment as a sort of piggy back drug. This new drug will go in and keep the tumor cells from reproducing now that the Avastin has cut-off the blood supply to the tumor. The combination of these drugs has worked great with colon cancer and Dr. Fine has said that they have had good results with the combination in brain tumor patients. So Sean will start the new protocol next week. The hardest part of this is that he isn't really suffering any tumor symptoms, all of his problems are steroid related. He is now down to only .25 mg of steroids per day. Our next step is to get a physical therapist to come in and help us figure out some low-key exercises Sean can do to build up his strength and help me learn some ways to help Sean move around more efficiently. So that is where we are heading. Being home, as sad as it was to leave school, will be wonderful. Actually, I am looking forward to the challenges that await us, overcoming those challenges together, and reaping the rewards when it's all behind us!

last day

Well today was my official last day of work. It has definitely been a bittersweet day. The kids had a really rough time today with myself and the new teacher being there, they gave me such a hard time that it made it kinda easy to leave at the end of the day! However, saying "see ya later" to my teammates was very difficult! They were super sweet and we have made plans to go out to dinner soon! Everyone has made this transition so easy, it has been wonderful! I am definitely going to miss everyone a whole lot, but I will be going back to visit. On the other side of things, I am looking forward to being home with Sean and Brutus everyday and taking care of things at home. I am also hoping to get some scrapping time and definitely looking forward to starting and finishing a lot of projects around the house. So tomorrow is Sean's appointment with Dr. Fine at NIH and we are looking forward to what they have to say about his current state. We are hoping that we can get in touch with a physical therapist to come in and do some work for Sean and show me some ways to help him move around more easily, but we will see what they have to say tomorrow. Well I guess we will be updating again tomorrow or Saturday morning. Hope everyone is doing well.

Happy New Year!

Welcome 2007! Okay, so I am a few days behind, but it has been a little crazy at the Carabine's during this first week of the the new year. Sean, Brutus, and I welcomed the new year very quietly this year, hanging out at our house watching Love Actually and the ball dropping, reminiscing about our days in Times Square! It is so hard to believe that yet another new year is here. We are looking forward to all of the challenges and blessings that this year will bring us.

Here it is the first week of 2007, and we have already faced our first challenge. Sean is coming down off of the steroids because the tumor is stable and the steroids are no longer needed...or so we think. He is taking .5 mg/day which is a very low dose, but it has really taken a toll on his body and functionality. He has limited mobility and his energy level is extremely low. (Here is where I place my disclaimer: Sean's tumor is not causing any of these problems! The symptoms he is experiencing are somehow related to the steroids. We are thinking that the steroids may have messed up the body's natural production of something, but we haven't quite pegged it yet.) That said, after a lot of hemming and hawing, Sean and I decided that it would be best for both of us if I resign from my teaching position to stay home and take care of hubby. So my last day of work will be January 18th and then I will be home to make sure Sean is taking care of himself everyday! So right away our new year is starting off with some major changes. We do want to thank everyone for being super supportive and understanding, it has made all the difference in the world!

As if that wasn't enough to consume our week, Sean somehow ended up with Pink Eye, in both eyes! So we have spent the week trying to get rid of that, and trying to keep me from getting it. But this morning everything looks pretty clear, so we are thrilled about that!

Well, that is all I have for now, but seeing how this year has already started off exciting, I expect that I will be updating more frequently.