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!
Friday, December 28, 2012
Monday, December 24, 2012
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!
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!
Monday, December 17, 2012
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.
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.
Sunday, December 16, 2012
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.
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| Jack with his gear on to "help the boys" get the house ready for daddy. |
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| 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.
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| Lunch with the guys.....good times! |
Wednesday, December 12, 2012
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!
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!
Sunday, December 9, 2012
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.
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.
Thursday, December 6, 2012
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!
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!
Monday, December 3, 2012
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.
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.
Sunday, December 2, 2012
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.
Friday, November 30, 2012
Share a Picture or Two
With everything going on, and the uncertainty of the future, I have been trying to gather photos of Dan to put in a book for Jack. Great minds obviously think alike, because that same day two of Dan's buddies came up with the idea to sign up for a photo sharing website that will allow people to upload and share any special pictures they have of Dan. Below you will find a link to Photobucket, along with the user name and password. Please feel free to sign on, check out the photos, and upload any you might want to share. A big thank you to Coby and Jason for setting this up!
Go to:
www.photobucket.com
user name: DanBarbeau
password: family
Sunshine in the Midst of Rain Clouds
I thought I would start every one's weekend off with some good news....Dan's therapy is going great, and we are only three days in to it! The staff at Elks Rehab have been phenomenal. Dan is receiving physical therapy, occupational therapy, and speech therapy. The speech therapy is more of a precaution-he is totally fine in regards to speech and cognitive function, they just like to monitor it to make sure there are no regressions. His therapists are really encouraged by how much strength Dan has, his good health prior to surgery, and his attitude and determination. With some assistance in sitting up Dan is now able to hold himself steady in the sitting position. They already have him working on standing, albeit assisted, but compared to where we were at the beginning of the week, it is amazing progress! You can already tell that his movements are becoming more coordinated with each day, as his brain continues to repair itself.
We won't have a plan of discharge from Elks until Wednesday or Thursday. The plan for discharge is just a target date that Dan and his team works towards to getting him home. That target date could change of course, depending on his progress. Right now, best estimate that we have been given is 4-6 weeks. So, for the next few days we are going to rejoice in his amazing progress as we prepare ourselves for our first oncology appointment Monday. Once again, thank you all for your love and support!
We won't have a plan of discharge from Elks until Wednesday or Thursday. The plan for discharge is just a target date that Dan and his team works towards to getting him home. That target date could change of course, depending on his progress. Right now, best estimate that we have been given is 4-6 weeks. So, for the next few days we are going to rejoice in his amazing progress as we prepare ourselves for our first oncology appointment Monday. Once again, thank you all for your love and support!
Tuesday, November 27, 2012
Pathology & Moving Day
This week has brought about two big steps for us in our journey: the final pathology came back and Dan got moved to Elks Rehab. Unfortunately, one wasn't good news. First things first-the pathology. Final pathology shows that Dan's cancer is indeed non-small cell lung cancer, stage IV. (FYI-all lung cancers that have metastasized to other organs is automatically classified as a stage IV.) So what does that mean in terms of treatment? We have no idea at this point, aside from the overload of information you can read on the American Cancer Society website and about a thousand other sites. We have our first oncology appointment next week, at which time we will have a better idea of what Dan's treatment will look like.
The more exciting news is that Dan got moved over to Elk's Rehab Hospital today! Thanks to the ill-timed Thanksgiving holiday and an insurance company that took off Thursday and Friday, it took a little longer to get there than we hoped. Dan will work with the physical therapists up to three hours a day, which is the most allowed. This is a tribute to his strength and determination to get over this obstacle. In the next few days, once they have completed their assessment, they will give us a target date to getting Dan home. This target date comes with the understanding that it could move, depending on the rate of progress. As for visitors-at this point Dan is not ready for visitors. His body has been through so much this past week and he is going to need some time to adjust to his more rigorous schedule of physical therapy. We will keep you posted.
Finally, we wanted to thank everyone for their concern, support, and well wishes. For those who have sent emails, I apologize if I haven't responded yet. Please know that I will update the blog as soon as we have something worth reporting. If you don't see a post for a couple of days it is simply because we are just moving forward with our daily tasks, not because something has happened. We feel so blessed by you all!
The more exciting news is that Dan got moved over to Elk's Rehab Hospital today! Thanks to the ill-timed Thanksgiving holiday and an insurance company that took off Thursday and Friday, it took a little longer to get there than we hoped. Dan will work with the physical therapists up to three hours a day, which is the most allowed. This is a tribute to his strength and determination to get over this obstacle. In the next few days, once they have completed their assessment, they will give us a target date to getting Dan home. This target date comes with the understanding that it could move, depending on the rate of progress. As for visitors-at this point Dan is not ready for visitors. His body has been through so much this past week and he is going to need some time to adjust to his more rigorous schedule of physical therapy. We will keep you posted.
Finally, we wanted to thank everyone for their concern, support, and well wishes. For those who have sent emails, I apologize if I haven't responded yet. Please know that I will update the blog as soon as we have something worth reporting. If you don't see a post for a couple of days it is simply because we are just moving forward with our daily tasks, not because something has happened. We feel so blessed by you all!
Sunday, November 25, 2012
Quiet Weekend
I wanted to give you a little update...things have been pretty quiet this weekend (praise God!). It looks like Dan should get moved to Elks Rehab tomorrow, and we should have final pathology any day. In the meantime, we have been keeping things pretty low key, watching football, and just looking forward to getting out of the hospital.
This upcoming week looks to be another big one for us, so I will keep you all updated.
This upcoming week looks to be another big one for us, so I will keep you all updated.
Saturday, November 24, 2012
A Little Set Back
If you read my prior post, then you know that Dan's tumor was malignant. Turns out he also has a spot (3 cm) on his lung. At this point, the natural assumption is that he has lung cancer which has metastasized to his brain. Our neurosurgeon feels that is what indeed has happened, but until we get the final pathology report sometime next week, we won't know for sure. I know what you are thinking, and no-there is no good reason why Dan should have lung cancer. He never smoked one cigarette, his work environment was not an issue, as far as we know he had no radon exposure. For his risk factors and age, Dan fits into the 1% category of people who have lung cancer. We may never know why.
The more pressing issue we have been facing the past couple of days is the fact that Dan developed what is called Wallenberg Syndrome. Essentially that means he had a mini-stroke. We don't know when this occurred, there are several possibilities. What has happened is he has no sense of balance. He has some strength in his arms/legs, numbness in his hands/feet, and no ability to sit up or stand. When the physical therapist gets him sitting up on the bed, he feels like he is floating in water and has trouble determining where his mid-point is. He is also having trouble with his hand/eye coordination. The good news is that the doctor feels that most or all of his function can be restored through heavy physical therapy. So, that means they will be moving Dan to Elks Rehab Hospital (across the street from where he currently is). They are going to start him on a heavy 3-hour a day rehab program with the hopes that he can become independent in the next few weeks and we can get him home. This will be very important as we also need to begin his radiation/chemo treatments once we have final pathology.
The current plan is to get him transferred to Elks as soon as possible (there is a shot it could happen today, Saturday, but may not be until early next week). Dan's mom is coming next week, and once he is settled, there will be some opportunity for limited visitation. With so much happening, Dan has not felt up to receiving visitors, and he tires easily. We know everyone is concerned, and is thinking of him and I hope this blog will be a good source to try and keep everyone updated. Please feel free to leave a message for Dan on here and I will read them all to him. We really appreciate all your love and support!
The more pressing issue we have been facing the past couple of days is the fact that Dan developed what is called Wallenberg Syndrome. Essentially that means he had a mini-stroke. We don't know when this occurred, there are several possibilities. What has happened is he has no sense of balance. He has some strength in his arms/legs, numbness in his hands/feet, and no ability to sit up or stand. When the physical therapist gets him sitting up on the bed, he feels like he is floating in water and has trouble determining where his mid-point is. He is also having trouble with his hand/eye coordination. The good news is that the doctor feels that most or all of his function can be restored through heavy physical therapy. So, that means they will be moving Dan to Elks Rehab Hospital (across the street from where he currently is). They are going to start him on a heavy 3-hour a day rehab program with the hopes that he can become independent in the next few weeks and we can get him home. This will be very important as we also need to begin his radiation/chemo treatments once we have final pathology.
The current plan is to get him transferred to Elks as soon as possible (there is a shot it could happen today, Saturday, but may not be until early next week). Dan's mom is coming next week, and once he is settled, there will be some opportunity for limited visitation. With so much happening, Dan has not felt up to receiving visitors, and he tires easily. We know everyone is concerned, and is thinking of him and I hope this blog will be a good source to try and keep everyone updated. Please feel free to leave a message for Dan on here and I will read them all to him. We really appreciate all your love and support!
Surgery
Surgery........for this particular part of our journey we didn't prepare very well. When we met with the Neurosurgeon, he said that Dan could be out of the hospital in 24-48 hours. We both interpreted that to mean that the surgery was somehow less serious, or invasive than it was. Let's face it, they were going to cut open his head and remove a huge tumor that had invaded a very sensitive area of the body. In hindsight, none of that sounds like something that warrants being discharged from the hospital in 24 hours. But away we went, and really, what choice did we have?
Our check in time at the hospital was 9:30am. After prepping him in pre-op, they brought me back to wait, and wait, and wait some more. The surgery prior to ours ran long, so Dan got in to surgery about the time we had expected him to come out. So we waited. And surgery ran a little long, so we waited yet again. Finally, we got notice they were finishing up and the surgeon would be out shortly to talk to us (myself, my dad, and step-mom). The good news: the surgeon was able to remove all of the tumor, including the part that had just begun to grow into the brain stem. The tumor had been blocking the area that drains spinal fluid, and upon removal, it began to drain again on it's own. This was great news, as plan B would have required a tube to be placed in Dan's head to re-route the drainage of the fluid. The bad news: initial pathology showed that the tumor was malignant and did not originate in the brain, but had spread from somewhere else.
After recovery, they moved Dan into ICU (standard procedure) for 24 hours, then we were able to move to the neuro wing of the hospital. Now it was just a matter of waiting for the final pathology report.
Our check in time at the hospital was 9:30am. After prepping him in pre-op, they brought me back to wait, and wait, and wait some more. The surgery prior to ours ran long, so Dan got in to surgery about the time we had expected him to come out. So we waited. And surgery ran a little long, so we waited yet again. Finally, we got notice they were finishing up and the surgeon would be out shortly to talk to us (myself, my dad, and step-mom). The good news: the surgeon was able to remove all of the tumor, including the part that had just begun to grow into the brain stem. The tumor had been blocking the area that drains spinal fluid, and upon removal, it began to drain again on it's own. This was great news, as plan B would have required a tube to be placed in Dan's head to re-route the drainage of the fluid. The bad news: initial pathology showed that the tumor was malignant and did not originate in the brain, but had spread from somewhere else.
After recovery, they moved Dan into ICU (standard procedure) for 24 hours, then we were able to move to the neuro wing of the hospital. Now it was just a matter of waiting for the final pathology report.
Friday, November 23, 2012
How it Began
The first question we have been getting is "Did you know this was coming?" The answer is no. At the beginning of October Dan was hunting up near New Meadows when he jumped out of the truck and had a moment of light headedness. It passed and he never thought any more of it. A few weeks later, while traveling for work, he woke up with a horrible case of dizziness and vomiting and went to an urgent care clinic. Dan had noticed a little pressure in his ears, and with his prior history of having terrible allergies and sinus issues, it looked like he had a bad sinus infection. The doctor prescribed and antibiotic and anti-inflammatory. This is when the symptoms began to get masked....the anti-inflammatory reduced the inflammation around his tumor and gave him some relief. When the medications ran out, the symptoms came back. Dan followed up with an ENT PA in town, and based on the symptoms, determined that he likely had an inner ear infection. He gave him a stronger and longer dose of antibiotics and another anti-inflammatory, again giving relief to the symptoms. Once again, when the dosage was done, with symptoms came back.
The light headedness upon standing became a more prominent issue. As you can image, Dan was really frustrated. The ENT PA told him he was fine. He followed up with his GP which diagnosed him as having Positional Vertigo. A couple of really rough days followed, and with Dan's mounting frustration, our Chiropractor referred him to a PT who specialized in Vertigo treatment. His appointment was Monday, November 12. It was during that appointment the PT (our Angel, Connie at STARS), got to witness his lightheadedness first hand. They noticed his pupils dilated to two different sizes. She knew something was wrong and sent him immediately over to the emergency room. After 8 gruelling hours of tests and waiting at the emergency room, Dan came home to tell me the results-there was a tumor in his brain. My world stopped.
The emergency room had set up a referral for a Neurosurgeon, Dr. Montalbano, for Wednesday morning, November 14. The next day and a half was filled with fear, sorrow, tears, and lots of questions as we waited to find out what we were dealing with. At the doctors appointment we were told the tumor was about the size of an apricot, located in the back of the head in the cerebellum. It had begun to block the channel of the brain stem where spinal fluid drains. Dan needed to have it removed soon, as left in his brain, were were looking at no more than 3 weeks before it would become fatal. What we didn't share with everyone was the fact that Dan had two additional lesions in his brain. The other two were much smaller, but still a concern. Until the tumor could be removed and biopsied, we weren't sure what we were dealing with. We knew telling everyone about all 3 tumors would be really overwhelming, and at this point, we couldn't answer any questions. So we opted to stick with the things we did know, and give ourselves time to process what we could be facing in our very near future. Surgery was scheduled for Tuesday, November 20 at St. Luke's Boise.
Thanks to a heavy duty anti-inflammatory, Dan actually felt pretty good the week leading up to the surgery. We were so thankful for the time to get some things in order, arrange leave from our employers, get my parents out here to stay with Jack, and have time as a family. We took Jack swimming nearly everyday, managed to squeeze in a date night, and overall just hung out. What we weren't prepared for was the next few days to come.....
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| Dan and Jack carving pumpkins this year |
The emergency room had set up a referral for a Neurosurgeon, Dr. Montalbano, for Wednesday morning, November 14. The next day and a half was filled with fear, sorrow, tears, and lots of questions as we waited to find out what we were dealing with. At the doctors appointment we were told the tumor was about the size of an apricot, located in the back of the head in the cerebellum. It had begun to block the channel of the brain stem where spinal fluid drains. Dan needed to have it removed soon, as left in his brain, were were looking at no more than 3 weeks before it would become fatal. What we didn't share with everyone was the fact that Dan had two additional lesions in his brain. The other two were much smaller, but still a concern. Until the tumor could be removed and biopsied, we weren't sure what we were dealing with. We knew telling everyone about all 3 tumors would be really overwhelming, and at this point, we couldn't answer any questions. So we opted to stick with the things we did know, and give ourselves time to process what we could be facing in our very near future. Surgery was scheduled for Tuesday, November 20 at St. Luke's Boise.
Thanks to a heavy duty anti-inflammatory, Dan actually felt pretty good the week leading up to the surgery. We were so thankful for the time to get some things in order, arrange leave from our employers, get my parents out here to stay with Jack, and have time as a family. We took Jack swimming nearly everyday, managed to squeeze in a date night, and overall just hung out. What we weren't prepared for was the next few days to come.....
Our Family
Just a little background information for those of you who may not know how our little family got started.....Dan and I met in 2003 with the help of a little website called Match.com. Out of over a hundred profiles that supposedly matched my criteria, Dan was one of only 2 who I really had any interest in contacting...boy am I glad I did! We hit it off immediately and found that he worked out everyday at the Downtown YMCA, which is where I worked at the time. I truly believe that he was meant for me and we would have met one way or another. We married in 2004 and set out building our lives together. Dan indulged my wanderlust and we traveled to British Columbia, Cancun, Cabo, Costa Rica, France, and Spain. I embraced my inner river rat and learned to kayak and raft. Dan also taught me the importance of having the correct gear and base layers to keep warm in the winter to enjoy the outdoor activities I would normally have avoided! Things were pretty darn good....and then they became great.
In February 2008 (Leap day to be exact, a bet that I lost with Dan!) we welcomed our beautiful little boy, Jack Thomas Barbeau. Our would as we knew ceased to exist, and it was awesome. The past four (almost five!) years have been filled with fun, excitement, learning, growing, and never a dull moment (don't let me kid you-we also had some exhaustion, tears, frustrations, fears and over all anxiety of being a parent, but they take a backseat to the good stuff). We have been very fortunate to have some awesome adventures with Jack, and the amount of joy he gives back to us is immeasurable. What a blessing!
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| Dan, Jack, and I at the Boise State vs. Fresno game in September |
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