Radiation Finish Line!

On Wednesday afternoon, Dan completed his radiation treatment. What started out (much like the oncologist warned us) as an unnoticeable quick zap of a laser finished as a high intensity, energy draining, extreme nausea treatment. Radiation treatments cause swelling of the brain, which brings an uncomfortable amount of pressure to the head. Even on a strong steroid, the pressure contributes to the nausea and makes sleeping somewhat difficult. Which is ironic, considering how exhausting the treatment makes you. With that increased pressure, Dan had some minor issues with his surgery incision. However, his neurosurgeon feels this should resolve over the next few days with antibiotics. The radiation also causes red, burn like irritation on the skin. Dan looks like he has been on a week long river trip with no sunscreen and the result is a bright red, burnt head that is now beginning to peel. On the upside, in about two weeks he will have a nice winter tan! Dan should see some relief from the symptoms over the next 7 days or so-just about the time he gets back into his outpatient physical therapy.

While Dan was originally frustrated that he would have to take a two week break from PT, he now understands how it would be nearly impossible for him to be successful right now and that this break over the holiday's is indeed a blessing. However, since being at home, his core strength and hip control are actually improving. That is in large part to his decision to be as independent as possible. Aside from a few daily tasks, Dan is able to get himself up and around and all over the house. Everyday things have become easier, and he is anxious to keep moving towards getting around with a walker. Jack has decided to challenge Dan (and Mommy!) further by leaving the Lego's he received at Christmas all over the house, like an obstacle course to navigate through!

Speaking of Christmas, we had a very nice holiday and Jack was sufficiently indulged! We enjoyed all the cards, emails, and messages from everyone and hope you too had a very merry Christmas. Here is to a safe and happy new year!

Holiday's at Home

Hello Everyone,

As you may have noticed, the blog was a bit neglected this past week. Dan did come home on Wednesday, and everyone is happy to have him here. For the first time in a while, Dan slept great and was able to eat a decent meal and keep it down. We have been adjusting to a new schedule, juggling doctor's appointments, keeping track of Dan's med schedule, and frantically trying to get ready for Christmas.  Needless to say, the last week has flown by! During all of this, Dan began to experience some gastrointestinal issues, due in part to his medications, and in part to his lack of mobility. I think we are over the worst of it, and Dan is feeling better each day.

We are so thankful to have Dan home for Christmas and are looking forward to enjoying the day together.  Thank you to everyone for your love and support. I know some of you have called or emailed over the past week, and I apologize if we haven't yet responded.

Wishing you and your loved ones a wonderful holiday.  Merry Christmas!

Good News!

This morning we met with Dan's medical oncologist, Dr. Zuckerman at MSTI. The purpose of the appointment was two fold: find out the results of the mutation tests and to get Dan's chemo schedule. The doctor started immediately with the test results: Dan has a EGFR mutation, which is really good news for a couple of reasons: patients with EGFR mutations have a 50% chance of going into remission with the targeted drug therapy that is now used. Also, a targeted drug therapy means that Dan will take a pill everyday for the foreseeable future, but will not need traditional chemo, nor additional radiation treatments. Research has shown that the medication can target the tumors in the brain. The progress of the tumors will be monitored by a CT scan and MRI every two months.

To keep things in perspective, this isn't a magic bullet. There is no cure for lung cancer. But given Dan's circumstances, it is the best possible news we could get. Of course Dan could end up the 50% of people who don't go into remission, but only time will tell. In the meantime, Dan can continue to focus on his physical therapy and gaining his mobility with limited side effects from the targeted therapy.  Once Dan has more mobility, we can pursue a second opinion at MD Anderson. The second opinion will not likely change the course of action, but will keep us updated on any new, developing treatment options.

Through all this darkness of the past month, God has bestowed upon us an incredible support system and the ability to cope and move forward. Now I feel that he has also given us something I was afraid wasn't an option: hope.

Modifying the House

It was a pretty busy weekend at the Barbeau house to cap off a very busy week. Dan was able to enjoy two trips home this weekend. Saturday night he joined Jack and I for a quiet dinner and a little bit of bowl game watching. Sunday was a bit more festive as a few of Dan's buddies came by the house to help us with some modifications that were needed before Dan comes home on Wednesday. Dan was able to be home for a few hours to visit with the guys and oversee the projects.  

Jack with his gear on to "help the boys" get the house ready for daddy.

Thankfully, when we designed our house, Dan was insistent on having a wide stair case and hallways. That is proving to be very helpful!  Tomorrow (Monday) we are having a stair lift installed to assist Dan with getting from the main floor to the second floor where the bedrooms and full baths are. (Thank you Kelly and Mountain Power for installing the outlet we needed for the lift.) We had grab bars installed in two bathrooms, modified our shower for easier access, and built a ramp from the garage into the house. The occupational therapist Dan has been working with at Elk's will be coming to the house Tuesday to do a walk through and make any final recommendations for modifications.

Jack's plane he built with the help of Coby, Todd, and Jason

I have attached a few pictures of today's events.  A very big thank you to Coby, Todd, Jason, and Luke for their handyman skills and friendship, and for allowing Jack to "help the boys". A thank you also to Shauna for entertaining Jack with her incredible lego building skills. We feel so very blessed.

Lunch with the guys.....good times!

One Month

Hard to believe, but it was one month ago that our lives changed completely.  I think this has been the longest month of my life, I know it has been the most difficult. One of the bright spots for all of us is the huge amount of love and support we have received from everyone. We feel so blessed by you and know that we appreciate all your thoughts, prayers, letters, and emails.

Dan began his radiation treatment on Monday. So far, he hasn't had any side effects. The treatment itself is fairly quick, Dan says it is only about 5-6 minutes of exposure everyday-Monday thru Friday. His last treatment of this session will finish the day after Christmas. We will find out Monday what his chemo schedule will look like. Unfortunately, and unrelated to the radiation,  Dan has been suffering from nausea. It began before the radiation started, and we don't know if he has a touch of a stomach bug or something else. His doctor has prescribed him an anti-nausea medication, along with an appetite stimulant. His appetite has taken a nose dive during this process the past month, so hopefully this will help.

Dan continues to make amazing progress in his therapy. He was able to have his first pool therapy session on Tuesday and there was a noticeable difference in his hip control that afternoon at physical therapy. The pool therapy is so valuable because it allows him to do things that would be too difficult on dry land, thanks to the buoyancy water provides. We are hoping that he gets a few more pool sessions before he is released next week. Yes, that is right-Dan is officially coming home on Wednesday, Dec 19th. He will still be using a wheelchair as his primary source of mobility but will continue to receive outpatient therapy to work towards independent walking. That means some modifications to the house (building a two-story house seemed like a smart idea a few years ago!) His occupational therapist will do a home evaluation early next week and give us a better idea of how to accommodate his needs. I am sure there will be a post about that in the future!

In the meantime, we will rejoice in the fact that Dan will be home with us for Christmas!

Home for a Visit!

The big excitement for this weekend was that Dan got to come home for a couple of hours for a visit! In order to be approved for what Elk's terms a CIV, I had to pass the transfer certification which required Dan and I to be able to transfer him from his wheelchair to the car, with the help of a sliding board. Let's just say the first try didn't go so well and the therapist had to step in and assist! Thankfully, as the therapist so kindly pointed out, the little mishap occurred while he was there to assist us, and we knew what not to do. When it came time for the home visit, we called in backup. Dan's buddy Coby and my dad kindly stood by just in case we needed any additional assistance, but I am happy to report all went smoothly! We all enjoyed Dan's visit home, especially Jack-who was so excited to have daddy home. He donned his Spider-man suit just for the occasion.

This morning (Sunday) Dan suffered a muscle strain in his right upper rib, lower shoulder area. Some light exercises and then pain medication seemed to relieve some of the pain, but this evening he was feeling some stiffness again in that area. Please pray that the strain is minor and won't interfere with his physical therapy this week. We have a week and a 1/2 left of therapy before Dan's scheduled release date and he is hoping to make as much progress as possible. Tomorrow is also the beginning of Dan's radiation treatment, so prayers and positive thoughts for that would be much appreciated.

I thought I would leave you with a picture of Dan and Jack checking out his new tablet.

A Quick Update

Just wanted to give you a quick update on the week so far.  Dan's PET scan was postponed-we had a bit of a mix up on what day the test was and transportation from the rehab facility.  He still needs to get it done, but it may be a couple of weeks.  We also had to work out Dan receiving his radiation treatment and continuing his rehab therapy.  Elk's typically discharges a patient once they need to begin radiation/chemo, so we were a bit worried.  However, they have agreed to work with him, assuming he can keep up some of his therapy.  As we are learning, there are a lot of people involved and getting everyone to communicate, follow up,  and work together can be a bit of a challenge.

On a positive note, Dan is still making huge strides in his physical and occupational therapy.  The past couple of days they have had him up walking, first with the parallel bars and then with a walker.  He is still in the early stages, but with each session things get a bit easier.  To challenge him a bit, they tackled stairs for the first time today.  He was able, with assistance, to get up and down five steps!  They have set his target release date from Elk's at December 19.  That could change, depending on what happens with rehab over the next two weeks, but it would be great to have him home for Christmas.

I can't say this enough, but thank you all for your love, prayers, and positive thoughts.  It means so much to all of us!

A Waiting Game

If there is anything I have learned, it is nothing in this process happens quickly, or at least as quickly as we would like it to.  (That probably goes for you and having to wait for me to get around to posting updates too!)  We met with the first oncologist today, Dr. Smith at MSTI.  I say first, because he is a radiation oncologist, and Dan will also need to see a medical oncologist who handles chemo.  He didn't have much new to tell us in regards to type and stage of cancer: non-small cell lung cancer, stage IV.  We did finally get to see a CT scan of Dan's lung.  The positive is it is in the air sac, not touching any of the edges of his right lung, which explains why Dan has yet to show any symptoms in regards to breathing, coughing, etc. The negative of course is that it is there at all, and is a little larger than we originally thought, just over 5 cm.

As for treatment, Dr. Smith wants to start with radiation of Dan's brain-the entire brain.  He recommended not spot radiating, due to the fact that Dan already had 3 lesions.  There is a very good chance there could be other cancer cells lingering in the brain, and we want to try and get them all.  His radiation will begin next Monday, Dec 10.  He will receive treatment Monday-Friday for 15 minutes each day.  The treatment will last approx. 2 1/2 weeks.  Once those 2 1/2 weeks are completed, they will wait 6 weeks before beginning the next treatment.  During that time they will be watching and marking the tumors for any changes.  Side effects of the radiation are the standard nausea, fatigue, and skin irritation (like a sunburn) on his head.  The side effects will get worse as the treatment goes on.  We are hoping he will be able to still continue some type of rehab during those 2 1/2 weeks, we will just have to see.

As for treating the lung, Dan is scheduled for a few more tests.  One is a PET scan to see if there are any additional "hot spots" or areas that could possibly be holding cancer cells.  The other test is to see if Dan's cancer contains one of two mutations.  If a mutation is found, it would change the type of chemo used to treat his cancer.  Due to the length of the turnaround time on the tests, we won't get any results until the week of Dec 17-hence the waiting game.  So, we need to get through two more weeks, and Dan's first round of radiation, to have a better understanding of what we are up against.  While that explanation may be a bit unsatisfying because there are still unknowns, we both felt that the appointment today was better than it could have been.

Many of you have inquired as to if we would be getting a second opinion, and the answer is yes.  After much research, I will be getting in touch with the MD Anderson Cancer Center in Houston, TX.  They have an amazing lung cancer treatment & research center, one of the best in the country. With Dan not able to travel right now, we may be limited in what our options are, but we at least need to explore all avenues. In the meantime, we are rejoicing in the great progress Dan is making everyday at rehab, and thankful that he gets another full week of progress before starting treatment.

Chicks Dig Scars

One of Dan's favorite movie quotes is "Pain heals, chicks dig scars, and glory lasts forever".  Well, he's got the scar part down!  Thought you might want to see what we have affectionately referred to as "the zipper".  Thankfully everything has healed well and the staples should be out any day.