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.

wonderful end of 2006

Well, it has been a long, rough year, but the holiday season has been quite wonderful. We were very excited to welcome Mr. Simon Christopher Howes into the world a little early on December 21! He is absolutely wonderful and we could not be more excited for proud momma and daddy, Stacie and Zach.

Our Christmas festivities went off without a hitch and were very enjoyable! On the 23rd, we traveled to Warwick to spend the day with the Aabs and the Carabines and had a very nice day. Christmas Eve we were at The Emery's with everyone, which is always wonderful. This year, on Christmas day, we had all of the Parto's over to our house and had a very relaxing, fun day. The day did have a few sad moments. Of course, we were reminded that Grandmom was not with us this year, but I think that she was definitely here in spirit and watching over us as we enjoyed each other's company, just as she would want it.

Sean had an appointment at NIH on the 22 and more good news came our way. The tumor is stable, with possibly minor shrinking, that we will not notice until a later time. Sean has now begun to ween off of the steroids (woo hoo!) little by little. Our next appointment is toward the end of January and we are looking forward to more good news.

For those of you who haven't seen Conlon's blog, the link is:
http://conlon-tracyann.blogspot.com/
Check it out, he has been updating as often as possible from the Middle East.

We hope that everyone has had a wonderful Christmas Season and that everyone will have a fantastic, blessed New Year!

update on mom mom

Well Mom Mom is home tonight. After the angioplasty, the results were inconclusive and they sent her home, with really no more information than she went with. She is feeling better, but still no answers about what may be going on. Hopefully it was something that has passed, and will not be an ongoing issue, but I guess we will have to wait and see. Thanks for the thoughts and prayers.

my "other" grandmother

Well, after a bout of infection, followed last weekend by chest pains and general discomfort, my grandmother (Mom Mom) went to the hospital yesterday morning. The doctors ran a series of tests, including a stress test, to determine the cause of the problems. The results from the second half of the stress test show that there is some sort of blockage in one of her arteries. She will be transferred to St. Joe's hospital (another local hospital that specializes in heart procedures) first thing tomorrow morning where she will have a heart catheterization. As we find out more information, I will be sure to post updates. Please keep my grandmother and my family in your thoughts and prayers. Thanks!

Another Thanksgiving

Well another Thanksgiving has successfully come and gone! We had the annual gathering at our house again this year and everything was great! Conlon and TracyAnn were the first guests to arrive, when they came into town last Saturday. We spent the whole week with them and had a blast! We got to spend Conlon's birthday with him and went to Kobe's Japanese Steakhouse to celebrate with some friends. It was so nice. On Wednesday Sean had an appointment with Dr. Fine at NIH and got tremendous results! There has been significant reduction in both of the tumors (brain stem and cerebellum) and the new drug seems to be working away. Unfortunately, he is not feeling a ton better, which is hard when you get such good news. But we are taking it day by day and looking forward to Sean feeling better soon! It was great news to celebrate over Thanksgiving. The Aabs and the rest of the Carabines were waiting for us when we got home on Wednesday and we enjoyed the rest of the weekend with them! On Saturday we gathered at the Emery's to make our Christmas candy, which is always a nice kickoff to the holiday season! Now it's back to work after a LONG break :( and getting ready for Christmas.

for those of you waiting...

here is an update on the two of us. Nothing much is going on here at our house. We are getting ready for Thanksgiving and all of our visitors. We are having our foyer and hallway painted, which looks great! I guess we actually have been pretty busy. Tomorrow is Friday and I have survived my first American Education Week and all of the visits that come along with that. I also survived my first set of parent-teacher conferences which went terrifically! This week has been challenging at school but next week is a very short week, so I am looking forward to that! Last weekend was Stacie's baby shower, which I had a hand in planning and it went great! She was a little surprised and we had a very nice time. Sean has been busy lining up our next home improvement projects which include getting the foyer painted, expanding our living room, and closing in our porch. These are things we are very excited about and can't wait to have finished. On the health front, Sean is doing a little better, seems to have a little more energy. We go to NIH next Wednesday before Thanksgiving for an MRI and appointment. We are looking forward to finding out how things are progressing. Conlon and TracyAnn are coming in this weekend, joined by the Aabs and the rest of the Carabines on Wednesday. We will be sure to post another update on Wednesday after the appointment.

good news

Hello everyone. We know it has been a while, but we have been holding out on updating until today. Sean had an MRI on Monday and we met with Dr. Fine today. Now, a month after starting Avastin, the results have been great! The tumor is greatly reduced in size and we are seeing improvements in the scans. Unfortunately, Sean's symptoms have not improved very much but the doc did say that he will be able to go down to 1 milligram of steroids as opposed to the 2 he is on now, which he is very excited about. Thank you so much for all of the positive thoughts and prayers, every little bit helps and we could not be more thrilled with these results! Please keep praying and sending good thoughts!

oops!

I know it has been so long since there has been an update! I apologize. Thank you to those of you who continue to check, even though I have been neglecting this.

Anyway, things are going well. Sean is doing about the same. He started his Avastic treatment on Monday, but doesn't feel better yet! We don't expect to know if there is any change in the tumor until the end of the month when he has an MRI and consultation with the doctor. But he is trying to keep his spirits up and get through this, as we all are.

Work, for me, is great! I love the kids, love the people that I work with and am enjoying going to work everyday (although I never thought I would say that!). It is going very well and I am learning a lot, still, and getting to put into practice all of the things I have already learned.

Other than that, everything here is pretty much at the status quo, nothing is really changing at this point. So we hope to see everyone at some point or another and I will try to be better about posting updates to the blog! Stay safe and happy...