September 20, 2009

Hey Everyone!

We just wanted to let you know that Evan's latest MRI went well. He's been off of chemo for three months now, and the tumor still looks the same. Three months without nausea and no new growth is great news!

We weren't supposed to have another MRI until the end of September, but they moved it up because Evan has been having problems with double vision. It started back in June, but got progressively worse over the summer. With the help of Evan's cousin (thanks Roger!) we got in to to see a great eye specialist who spent a lot of time with us. He determined that the problem is being caused by pressure on "cranial nerve #4." (Sounds very official doesn't it?)

Based on the MRI, this particular nerve passes right through an area in Evan's brain that is starting to show signs of damage from the radiation treatment he had two years ago. Evidently, radiation damage can show up as much as 10 years after the fact (comforting thought). But at least it's not being caused by a new tumor or something of that nature. So Evan is now the proud owner of a high-tech pair of glasses with a prism coating over the right eye. It has worked like a charm!

In other news, the kids are back in school and I started working again. Ryan is in 9th grade this year, Lindsay started 1st grade, and I'm the new secretary for the Counseling Center at Pleasant Grove Junior High School. Working again has been an adjustment, to be sure, but it's actually working out really well for all of us!

That's the latest. I hope you're all doing well! Thanks for all your support!

Love,
Margot

June 15, 2009

Today's MRI Results:

Evan's MRI showed no signs of new growth today, and our doctor was very pleased! So pleased, in fact, that he suggested we stop the chemo! (Yes, we had to pick our jaws up off the floor too.)

We were completely shocked! We thought, best case scenario, maybe he would space the treatments out to four weeks instead of three if the MRI looked really good. At the very least, we were prepared to be grateful for anything, as long as we didn't have to go back on the two week schedule. But stopping the chemo altogether had not even entered the realm of possibilities for us yet.

I was thrilled, but Evan was a little more cautious about it - it is his life at stake after all. But Dr. Choucair talked with us for a long time and we feel good about it. Basically, he said that we've probably seen all the reduction we're going to get from the chemo, and (considering how lousy it makes Evan feel) it's probably doing more harm than good at this point.

So, from here on out our goal is to improve Evan's quality of life and simply keep the tumor from growing. That means getting rid of the heavy chemo drug (called Irinotecan), but continue receiving I.V. treatments of the drug called Avastin (which Evan has already been receiving with the Irinotecan for the last 15 months).

The Irinotecan is what makes Evan so tired and sick, so he should start feeling a lot better without that. And hopefully, the Avastin will be enough to keep the tumor from growing. I don't understand exactly how it works, but somehow the Avastin effects the blood vessels in such a way that it cuts off the blood supply to the tumor. Without the blood supply, the cancer cells cannot multiply and reproduce so easily.

Of course, as the doctor explained, all this comes with a certain level of risk. Don't ask me how or why, but for some reason once you go off this chemo drug, the cancer cells can (in some cases) get really smart and find a way to build up a resistance to that drug. If that happens, and the tumor starts growing again, this chemo may not be able to stop it a second time around.

With other types of cancer the patient can move on to a different type of chemo drug because there are lots to choose from. However, with glioblastoma multiforme there are no other chemo drugs out there to try. So unless they come up with something new between now and whenever Evan's tumor starts growing again, we could be shutting the door on the one and only treatment option available to us.

When we stop and think about it that way, it feels a little bit scary. On the other hand, when we think about how miserable Evan has been over the last few months, then it feels like we have very little to lose and a whole lot to gain.

So, the plan is to continue the Avastin treatments (every four weeks) for the next three months and do another MRI in September.

The main side-effect we have to worry about with Avastin is that, with prolonged use, it causes increased blood pressure which Evan already started having problems with about two months ago. They started him on blood pressure medication, and have been steadily increasing the dose, but his blood pressure still hasn't dropped back to a normal range yet. Hopefully, they'll be able to get that under control soon.

Luckily, we haven't had any problems with blood clots since our little scare a few months ago. Lately, we've actually had trouble with his blood getting too thin instead of too thick. It just seems to go back and forth - which is just annoying!

Anyway, that's about it, in a nutshell. As always, we thank you more than we can say for your continued prayers on our behalf. I am absolutely certain that's the reason we got such a pleasant surprise today! We love you all!

Gratefully yours,
Margot

March 27, 2009

A LITTLE COMPLICATION:

O.K., so I don’t want to make a big deal out of this, but I always get in trouble with people when they find out something happened that I didn’t tell them about. So in the interest of full disclosure, we had a little scare yesterday.

Evan woke up with a very sore arm and a painful lump on the inside of his right arm, just below the crease of his elbow. The lump was about an inch and a half long and seemed to follow the path of the most prominent vein on his arm.

We got in to see Evan’s primary care doctor around 11:00 am. Dr. Riessen was quite sure that it was either a blood clot or some kind of infection. They tested Evan’s blood and sure enough, it was really thick. Evan’s blood has been very stable for the last several months, so this just came out of nowhere. Evan’s INR (which measures the viscosity of the blood) has been hovering between 2.4 and 2.7 for months, which is perfect! But yesterday it had dropped to 1.2 - way too thick!

So they sent us over to the hospital for an ultrasound, which took forever!!! Finally, around 3:00 pm, they confirmed that Evan did indeed have a blood clot in his arm. They decided it wasn’t bad enough to require hospitalization (which Evan was happy about), but I’ll be giving him shots twice a day for the next four days in addition to the blood thinner he takes orally. We’ll go back in on Monday to make sure Evan’s INR is back up where it needs to be, and hopefully that will be it.

I have to admit, I was pretty rattled yesterday! It seems like every time I start to think life is going to calm down a little bit, something happens to remind me how fast life can change. It’s a good thing to remember, but a little disturbing at the same time. I’m doing much better today, and Evan was as calm as can be through the whole thing. “No big deal,” he says.

Thanks for listening!
Margot

March 23, 2009

GREAT NEWS!

Dear Friends and Family,

We got great news today! First of all, the tumor actually shrunk a little bit. Three months ago, the tumor measured 2.0 x 1.1 x 0.9 cm. Today it measured 1.9 x 1.0 x 0.7 cm. That probably doesn’t sound like much, but when you realize how resistant to treatment this type of cancer normally is, it really is a miracle that the tumor has been reduced as much as it has and is still shrinking after more than a year on the same chemo drug. The doctor was amazed!

Also, the tumor was not nearly as bright and white on the MRI image today as it was three months ago. This would suggest that the drug (Avastin) which Evan receives with his chemo is working to cut off the blood supply to the tumor. In other words, the cancer cells are less active and unable to reproduce as easily. Again, the doctor was impressed!

And finally - the best news of all is that starting next week Evan will have three weeks between treatments instead of two. The dose will stay the same, but Evan will have an extra week to recover. I’m really hoping that will go a long way to improve his quality of life.

So that’s the plan for the next three months. We’ll go back for another MRI at the end of June and see how the tumor reacts to the reduction in treatment. Thanks again for all your prayers and support! We appreciate you all so much!

With love and gratitude,
Margot

March 17, 2009

MRI Next Week!

Dear Friends & Family,

I know it’s been ages since I wrote last - sorry about that! We haven’t had anything noteworthy to report though, so you haven’t missed anything. I guess we’ve been operating under the “no news is good news” rule.

Evan has continued receiving chemo treatments every other week, with the usual crummy side-effects. Unfortunately, the nausea has been hitting him harder and faster these days. He starts feeling sick as soon as they start the I.V. now, and he rarely makes it through the treatment without getting sick. It was a little better when he could at least make it home before it got really bad, but those days are over.

Evan has one more chemo treatment tomorrow (Wednesday), before his MRI which is scheduled for next Monday (March 23^rd). Unless Dr. Choucair voices strong objections on Monday, we’ve decided it’s time for a break. Depending on what the doctor recommends, we are planning to either stop treatment for a few months or, at the very least, move to some type of once-a-month maintenance chemo.

Hopefully, all the chemo Evan has received up to this point will have been enough to put the tumor into a dormant stage and keep it there. Our biggest hope is that Evan will be able to live with little or no chemo, and that the tumor will not start growing again for a very long time!

We are so grateful for all your prayers and support. We can never adequately express how much your love and friendship means to us. We feel so blessed! Thanks again, and we’ll let you know how things go next week.

Love,
Margot

January 5, 2009

HAPPY NEW YEAR!

We hope everyone had a happy holiday! Ours was wonderful. We had two whole weeks that were 100% carpool, homework, and medical appointment free! It was nothing short of heavenly!

Today, it was back to business-as-usual though. The kids went back to school, and it was MRI day for Evan. He had the scan first thing this morning and we met with the neuro-oncologist this afternoon to get the results. We got good news and great news!

The good news is that the tumor showed no sign of new growth. It didn't shrink, but as long as it's not growing - it's good news!

The great news is that if the next MRI (in March) comes back again with no new growth, the doctor is planning to take Evan off the rigorous treatment schedule and put him on what they call "maintenance chemo." The chemo drug and dose will remain the same, but he will only have to go in for treatment once every three or four weeks!

In March, Evan will have been on the heavy treatment schedule for a full year. The doctor is hopeful that this will have been enough time to put the tumor into a dormant stage, and that it will remain dormant even on the lighter treatment schedule.

The thought of having three weeks between treatments, instead of just one, was enough to put a huge smile on our faces! It made us feel like we might actually be on the home stretch with this thing!

Thanks for all your prayers and support. This would be so much harder without all of you behind us!

Love,
Margot