Evan's Treatment Plan
Dear Family & Friends,
Thanks for all your cards and e-mails – I’m sorry I can’t respond to each of you individually, but please know that we appreciate each of your messages.
We met with the Radiation Oncologist yesterday. His name is Dr. Watson and we liked him very much. He had already arranged appointments for all the preparation work, so we got everything done in one day which was great. Evan had to have another CT Scan and another MRI because they needed even higher resolution films for radiation than they did for the biopsy. They also fit him for a mask that he’ll wear to protect his face during treatment. It was a long day for both of us – about 6 hours from start to finish, but we were glad to get it all done.
He will start the Radiation and Chemotherapy treatments next Wednesday (Sept. 5th). For the radiation, he’ll go in 5 days a week (Mon.-Fri.) for 6 weeks. We figure his last treatment should be on Tuesday, October 16th which is exciting because Lindsay’s birthday is on the 18th, and Evan’s is on the 20th. So we’re looking forward to being done with radiation in time to celebrate their birthdays!
Each day’s radiation treatment only takes about 15 minutes from start to finish – that was a lot less time than I was expecting, so that was good news.
The chemo drug that Evan will be taking comes in a pill form and he’ll be able to take that at home, which will be really convenient. He’ll take that every day (7 days a week) throughout the 6 weeks of radiation. Then he’ll have one month off before they start it again. They’ll be doing blood tests every week, and if his white blood cell count drops too low he may have to stop the chemo for a few days till it improves, but the radiation will continue uninterrupted.
For those who are wondering how the radiation can attack the tumor without causing damage to all the other brain tissue it travels through – they will use between 3 and 6 low-dose radiation beams, each coming in from a different angle. The radiation doesn’t reach its full power dose until those beams intersect at the point of the tumor. I thought that was really interesting. We are so grateful for modern medical technology!
Anyway, so that’s the plan, in a nutshell. We’re going to relax and enjoy the Labor Day Weekend and then be ready to get all this going next week. Our ward is having a special fast for Evan this Sunday – if any of you would like to do so also that would be wonderful. Thank you for all your love and support. We’ll keep you posted as the treatment progresses.
Love,
Margot
August 24, 2007
Biopsy Results
Dear Friends and Family,
Thank you for all your kind notes yesterday. Your uplifting thoughts and expressions of support mean so much to us! Thank you again!
Friday was a long day, but Evan made it home just in time to see Ryan for a few minutes before he left on his first campout with the deacons. That was such a blessing! Ryan was so excited to go on this trip, but also so worried about Evan. Once he got to see Evan and see that he was o.k., all the fear and worry disappeared and the excitement could finally take over. My dad went on the trip with Ryan, and Ryan has awesome leaders and great friends in the quorum, so I know he’ll have a great experience. We were so grateful for that.
On Friday morning the nurses told us that Evan would indeed be able to go home that day, but said that Evan’s Oncologist (Dr. Choucair) wanted to see us before we left. It took several hours before he could get over to see us. We thought he probably just wanted to check on us and answer any questions before we left, but it turns out he had our biopsy results already. Evidently he wanted a specific pathologist to analyze the biopsy, and that particular pathologist (Dr. Chen) was scheduled to leave town this weekend. Dr. Chen graciously agreed to stay late on Thursday night in order to finish the study before he left.
The results were not what we were hoping for. Cancerous tumors are rated on a grading scale of 1 to 4, with 4 being the most malignant/fast growing form. What Evan has is called grade 4 Glioblastoma. This means that the treatment will include both Radiation and Chemotherapy. Evan will have Radiation treatments 5 days/week for 6 weeks, and take a Chemo pill everyday during those 6 weeks. After that, he will have one month off and get another MRI to see what the tumor is doing. Then he will go back on the Chemo pill for 3 weeks on and 1 week off. They can continue that treatment for up to a year.
The chance of completely getting rid of a tumor like this is only 3-5%, so the goal is to shrink the tumor as much as possible and then watch it really closely after that. Statistically, the prognosis isn’t great. The average life expectancy is 2 years. However, the doctor was quick to add that although an “average” can sound really scary at first, it also tells us that the other 50% went on to live much longer than that. Since Evan is young and doesn’t have any other health problems, he should certainly expect “above average” results.
Our surgeon came by to see us also, and he was very encouraging as well. He said that statistics are helpful only to the extent that they give you a sharp and clean understanding of what you’re dealing with - so you know you can’t mess around or be naïve. But after that, we just need to put them aside because every person and every tumor will respond differently to treatment and no one can predict that. And that’s the attitude we’ve had all along, so we’re going to stick to that.
We’ll be seeing the Radiation Oncologist next week to get all the details about the treatment and do any preparation work that needs to be done. I’m assuming they’ll start treatments as soon as that’s done, but I’ll let you know.
Thanks again for all your love and prayers. We are so lucky to have such a powerful support system. We saw lots of very sick people over the last three days who did not have that. It was a very humbling experience. We’re so grateful for each and every one of you.
All my love,
Margot
Dear Friends and Family,
Thank you for all your kind notes yesterday. Your uplifting thoughts and expressions of support mean so much to us! Thank you again!
Friday was a long day, but Evan made it home just in time to see Ryan for a few minutes before he left on his first campout with the deacons. That was such a blessing! Ryan was so excited to go on this trip, but also so worried about Evan. Once he got to see Evan and see that he was o.k., all the fear and worry disappeared and the excitement could finally take over. My dad went on the trip with Ryan, and Ryan has awesome leaders and great friends in the quorum, so I know he’ll have a great experience. We were so grateful for that.
On Friday morning the nurses told us that Evan would indeed be able to go home that day, but said that Evan’s Oncologist (Dr. Choucair) wanted to see us before we left. It took several hours before he could get over to see us. We thought he probably just wanted to check on us and answer any questions before we left, but it turns out he had our biopsy results already. Evidently he wanted a specific pathologist to analyze the biopsy, and that particular pathologist (Dr. Chen) was scheduled to leave town this weekend. Dr. Chen graciously agreed to stay late on Thursday night in order to finish the study before he left.
The results were not what we were hoping for. Cancerous tumors are rated on a grading scale of 1 to 4, with 4 being the most malignant/fast growing form. What Evan has is called grade 4 Glioblastoma. This means that the treatment will include both Radiation and Chemotherapy. Evan will have Radiation treatments 5 days/week for 6 weeks, and take a Chemo pill everyday during those 6 weeks. After that, he will have one month off and get another MRI to see what the tumor is doing. Then he will go back on the Chemo pill for 3 weeks on and 1 week off. They can continue that treatment for up to a year.
The chance of completely getting rid of a tumor like this is only 3-5%, so the goal is to shrink the tumor as much as possible and then watch it really closely after that. Statistically, the prognosis isn’t great. The average life expectancy is 2 years. However, the doctor was quick to add that although an “average” can sound really scary at first, it also tells us that the other 50% went on to live much longer than that. Since Evan is young and doesn’t have any other health problems, he should certainly expect “above average” results.
Our surgeon came by to see us also, and he was very encouraging as well. He said that statistics are helpful only to the extent that they give you a sharp and clean understanding of what you’re dealing with - so you know you can’t mess around or be naïve. But after that, we just need to put them aside because every person and every tumor will respond differently to treatment and no one can predict that. And that’s the attitude we’ve had all along, so we’re going to stick to that.
We’ll be seeing the Radiation Oncologist next week to get all the details about the treatment and do any preparation work that needs to be done. I’m assuming they’ll start treatments as soon as that’s done, but I’ll let you know.
Thanks again for all your love and prayers. We are so lucky to have such a powerful support system. We saw lots of very sick people over the last three days who did not have that. It was a very humbling experience. We’re so grateful for each and every one of you.
All my love,
Margot
August 23, 2007
Evan's Biopsy
Dear Friends and Family,
Evan went into surgery this morning at 7:30 am and was done around 10:30 am. Everything went as well as we could have hoped.
Shortly after surgery, they did a CT Scan to check for any complications (bleeding, blood clots, etc.) and everything was normal. He's been in recovery all afternoon, and probably won't be moved until later this evening. He's in quite a bit of pain, but he's coherent and able to understand and communicate clearly.
He's doing well enough that they think he'll be transferred to a regular room instead of ICU, so that's really good. If he continues to do well, they could send him home as early as tomorrow - we'll just have to wait and see.
Dr. Jensen was able to collect several good tissue samples, so they should be able to make a clear diagnosis. We should get the results back on Monday or Tuesday next week. Just from the brief analysis they did today, Dr. Jensen felt confident that they could rule out the two worst-case-scenarios. He was quite sure that it was not a "germinoma" which does not respond well to radiation, and he was quite sure that this was not a cancer that had spread to the brain from somewhere else in the body. So that's all good news.
When Dr. Jensen gets the biopsy results back, he will share them with Evan's Oncologist (Dr. Choucair) and Evan's Radiation Oncologist (Dr. Watson). We have an appointment with Dr. Watson next Thursday so that's when we'll get all the details on Evan's treatment plan. If it's a fast growing cancer, he'll receive radiation and chemotherapy. If it's a slow growing cancer, he will receive just radiation. Needless to say, we're hoping for the slow-growing form.
There are no words to express our gratitude for all your prayers on our behalf. There is no question in my mind that we have received countless blessings because of your faith and prayers. Thank you all so much!
We'll continue to keep you posted.
Love,
Margot
Dear Friends and Family,
Evan went into surgery this morning at 7:30 am and was done around 10:30 am. Everything went as well as we could have hoped.
Shortly after surgery, they did a CT Scan to check for any complications (bleeding, blood clots, etc.) and everything was normal. He's been in recovery all afternoon, and probably won't be moved until later this evening. He's in quite a bit of pain, but he's coherent and able to understand and communicate clearly.
He's doing well enough that they think he'll be transferred to a regular room instead of ICU, so that's really good. If he continues to do well, they could send him home as early as tomorrow - we'll just have to wait and see.
Dr. Jensen was able to collect several good tissue samples, so they should be able to make a clear diagnosis. We should get the results back on Monday or Tuesday next week. Just from the brief analysis they did today, Dr. Jensen felt confident that they could rule out the two worst-case-scenarios. He was quite sure that it was not a "germinoma" which does not respond well to radiation, and he was quite sure that this was not a cancer that had spread to the brain from somewhere else in the body. So that's all good news.
When Dr. Jensen gets the biopsy results back, he will share them with Evan's Oncologist (Dr. Choucair) and Evan's Radiation Oncologist (Dr. Watson). We have an appointment with Dr. Watson next Thursday so that's when we'll get all the details on Evan's treatment plan. If it's a fast growing cancer, he'll receive radiation and chemotherapy. If it's a slow growing cancer, he will receive just radiation. Needless to say, we're hoping for the slow-growing form.
There are no words to express our gratitude for all your prayers on our behalf. There is no question in my mind that we have received countless blessings because of your faith and prayers. Thank you all so much!
We'll continue to keep you posted.
Love,
Margot
August 15, 2007
Miracle Appointments
Dear Friends and Family,
Thanks for all the kind notes and messages we have received over the last few days. They have boosted our spirits and meant so much. And thank you for all your prayers - we have experienced so many miracles in the last few days.
Over the weekend we discovered that Evan’s aunt and uncle had personal connections with people of influence at the Huntsman Cancer Institute. Also, some friends in our ward served in the same mission as one of the surgeons we were trying to see. They all graciously agreed to help us. As a result, by the end of the day on Monday, we had scheduled appointments on Tuesday and Wednesday with the only Neuro-Oncologist in Utah (Dr. Choucair), as well as two of the best Neuro-Surgeons in Salt Lake, (Dr. Jensen) at the University of Utah/Huntsman Cancer Institute and (Dr. Rich) at LDS Hospital. These appointments could easily have taken 3 or 4 weeks to get on our own. There are no words to express our gratitude for the help we’ve received.
All the doctors agree that it would be extremely foolish to try and remove the tumor surgically, so a biopsy to determine what type of cancer it is will be the next step. Dr. Rich will be out of town for the next two weeks, so the biopsy will be performed by Dr. Randy Jensen at the University of Utah Hospital next Thursday, August 23rd. We won’t know the exact time until the day before.
Although there will be several hours of preparation to map Evan’s brain before the surgery, the biopsy itself will only take about 2 hours. If there are no complications, Evan should be able to come home the next day. The procedure is done using a GPS system and computer-controlled instruments, so the chance of complications with this procedure is relatively low (about 5%).
We’ve been told to expect the results from the biopsy within 3-4 days after the procedure. From that point on, Dr. Ali Choucair will oversee Evan’s treatment. Radiation will be the main form of treatment. However, we won’t know how often the treatments will be, how long the treatments will go on, or what level of radiation Evan will receive until we get the results back from the biopsy. If the cancer turns out to be extremely aggressive, a pill form of chemotherapy may be used in addition to radiation.
That’s pretty much where we stand right now. We won’t have any more appointments between now and the biopsy, so you probably won’t hear from us again until then.
Evan is still quite tired, but they started him on an anti-inflammatory medication to shrink the swelling in his brain and that seems to be helping. His short-term memory and other symptoms have improved a little bit. So that’s reassuring.
Thanks again for all your love and support! We love you all!
Love,
Margot
August 11, 2007
Sobering News
Dear Friends and Family,
Let me start by thanking each of you for all your fasting and prayers on Evan's behalf over the last few weeks. I can tell you that your prayers are being answered because we have felt blessed and strengthened in so many different ways this week.
Since I don’t know how much or how little information each of you has received through the “grapevine” this week, I thought I would start from the beginning and catch you all up to the same place. After this, I'll try to send out updates as often as I can as things develop and we learn more.
As some of you may already know, over the last several months Evan has become increasingly tired and sleepy. The doctors we went to see tested him for thyroid problems, anemia, mononucleosis, etc., and they tried various medications, but they couldn't find anything wrong and none of the treatments helped. Evan also had another sleep study done to see if this was somehow related to the sleep apnea he was diagnosed with two years ago. There were only slight changes and nothing that would explain the severe symptoms he has been experiencing.
Then, about 4 weeks ago, Evan woke up from a Sunday nap and his left eye seemed to be drooping. The next day we went to see Evan's primary care physician about it, but he didn’t seem too concerned and referred him to an Ophthalmologist to have his eyes checked. The eye doctor didn’t find anything of concern either, and Evan’s eye returned to normal within a week or two.
Then, about 2 weeks ago, I noticed that Evan's speech seemed to be slower and his short term memory seemed a little off – he would ask me the same question several times a day, or forget things we had just talked about. So last Wednesday (Aug. 1st) we got in to see a new doctor who immediately ordered more blood tests and an MRI. The MRI was done on Friday (Aug. 3rd) and on Tuesday (Aug. 7th) of this week we received the results from that MRI. It showed a large tumor (about the size of a walnut) in the center of Evan’s brain.
It just so happened that we already had an appointment scheduled that very day (Aug. 7th) with Evan’s Neurologist. We had made the appointment a week or two before as a follow-up to Evan’s most recent sleep study. That turned out to be a huge blessing because we didn’t have to wait for days and days to get a more educated analysis of the MRI. That would have been absolute torture.
The Neurologist confirmed the tumor and informed us that there were characteristics about the image that suggested the tumor was most likely malignant. He immediately got us an appointment for Thursday (Aug. 9th) with a highly reputable neurosurgeon in Provo, to find out if the tumor could be removed surgically. That appointment probably would have taken us at least a week to get on our own, so we were very grateful for his help.
On Thursday (yesterday, Aug. 9th) we met with that Neurosurgeon, Dr. Gardner. He did not deliver the news we were hoping for. The location of the tumor is such that removing it surgically would be too dangerous. The tumor is located deep in the brain, literally halfway between the front and the back, and halfway between the top and the bottom. It sits just below the ventricles where the two hemispheres of the brain come together. Luckily it is just above the pituitary gland and is not affecting the spinal cord or the flow of spinal cord fluid. So that was good news!
The problem is that the tumor is attached to the two centers of the brain that control breathing and wakefulness. This means that if they tried to remove the tumor surgically, they would run a high risk of damaging one or both of those brain functions which could leave Evan in a vegetative state or unable to breath on his own. Obviously, the risk of that is not an option.
Basically, the only treatment options left are radiation, chemotherapy, or a combination of the two. In order to determine which treatment to use they have to determine what type of cancer it is, which means they need to do a biopsy. We really liked the surgeon we met with yesterday, but we’re going to meet with at least two more surgeons before we decide who we want to perform the procedure. We have taken Evan’s MRI films to Neurosurgeons at LDS Hospital and the University of Utah. The surgeon at LDS Hospital was recommended to us by Evan’s Uncle who is a doctor in Salt Lake, and the surgeon at the U of U was recommended to us by our friend and neighbor whose son had a very complicated brain surgery there last summer. We’re hoping to talk to each of these surgeons sometime in the next week.
In our search for a great oncologist we’ve also been blessed with great help. My close friend Jenny, who has been battling various forms of cancer for several years and knows all the best Oncologists in the area, has been extremely helpful. As a result, we were put in touch with someone at the Huntsman Cancer Institute in Salt Lake City. They referred us to the one and only Neuro-Oncologist in the state of Utah. He specializes in brain cancer. We have to wait until Monday to see if we can get an appointment with him, but at least it gives us something to hope for.
Basically we’ll be in a holding pattern for the weekend – waiting and hoping to get appointments with two more Neuro-Surgeons and the Neuro-Oncologist for next week. We anticipate the biopsy will take place within a fairly short period of time after we have those appointments and decide which surgeon we want to perform the procedure.
I’m sorry this message was so long – but now that you’re all caught up to speed, they should be shorter from here on out. I just didn’t want anybody to be confused if they were missing part of the story.
Since I don’t have everyone’s e-mail addresses, please feel free to forward this message on to anyone else you think would like to receive it. If I don’t have your e-mail address, please send it to me and I’ll be happy to add you to our list so that you can receive these updates directly.
We love you all, and are so grateful for your love and support. We’re all hanging in there – Evan and I are getting lots of love and support from our ward and our families, Ryan has been a trooper, and since Lindsay isn’t old enough to really understand what’s going on she has been our source of comic relief.
Thanks again for all your thoughts and prayers. I’ll keep you posted as best I can over the next few weeks and months.
With Love, Margot
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