Update 5/1/2008

Jessica completed her radiation on March 31. (Yay!)

For the month of April she took a break from radiation and chemo.

Now in May, she will start a chemo-therapy only phase for six months. Essentially she will take the chemo-therapy pill, Temodar – at twice the dose when she was doing radiation treatment –for five consecutive days out of every month. The side effects are fatigue and nausea. To handle the nausea, the doctor prescribed Zolfran, an anti nausea medicine.

We had some good news, as a follow up MRI revealed that the tumor site is healing nicely, and no growth. The doctor said that she could not be happier about it -- except that she wants to continue working with Jess to reduce the frequency and intensity of Jess’ headaches. MRIs will be done every two months.

Sean has resumed going in to the office after being on family medical leave from late January – mid-April. However, he has informed his boss of his need to take intermittent family medical leave based on how Jess is feeling with the chemo. Also, he takes off Mondays in order to drive Jess to her blood work appointment.

Last week, Jess tended to Jake’s needs during the day when Sean was at work. However, we are starting to truly accept that we have a need for a baby sitter for a few hours daily, at least. Jess has too much fatigue right now, and when chemo kicks in, we expect that there will be other side effects. So, we are investigating that child care option now – a bit late we know.

Jake is crawling very actively now. Soon he will be cruising along the walls and tables. His speech patterns have changed too. Now we think he is trying to speak words but doesn’t quite get how to do that. His intonation and inflection seems to come and go. It is very exciting!

On a closing note, Brain Tumor Action week is May 4 – 6. Brain tumor research is under funded. And the Medicare waiting period of two years is unreasonable for those with brain tumors. Please check out the North American Brain Tumor Coalition. Become an advocate .Write letters and make phone calls to your elected representatives.

Update 2/7/2008

This is just a little update on Jess’ surgery, treatment, and prognosis, and just to let you know how we are doing throughout (please reply, and let us know how YOU are doing, too) First of all thank you all for your prayers, well wishes, positive thoughts, time, energy, and gifts. We do not know how we would manage without you. Some of you have traveled to Silver Spring, and stayed here at the stately Carter Hall. You have helped take care of Jake, and our home while Jess and Sean went about the task of managing the medical and job tasks. This is a very challenging time for our new, little family, and we will be forever grateful for your unquestioning sacrifices! And we are in your debt.

Jake is doing great! He sits upright now without any help (as long as he is on the ground), and freely laughs and giggles. He talks to himself more now. He is developing so quickly, we can’t believe our eyes! Anyone who saw him in December or early January wouldn’t think it is the same baby.

Jake’s mom is getting stronger. Her recovery from surgery is right on track. There have been several bumps in the road, including about three trips to the emergency room after surgery to deal with a build up of spinal fluid pressure. The pressure has gone down considerably, but this is a problem child that wants to stick around. Her latest MRI shows widened ventricles still (an indication of elevated fluid pressure). Dr. Quiñones (see February 2008 Readers Digest article) will be ready for shunt surgery at a moment’s notice, he told us. Also, she still has some vision problems in her left field of vision. And her headaches are still persistent, but manageable. Everyday brings new hope of improved function, but sometimes frustration at how much time it takes the body to heal itself.

You may recall that the original pathological report from December 28, was that her tumor was a grade II Astrocytoma.

However, we received some troubling news in mid-January. After further review, Peter C. Burger, M.D. at the Division of Neuropathology at Johns Hopkins Hospital – one of about three top experts in the field in the world -- declared that her tumor has mutated to a higher grade, and is now a grade III Astrocytoma, also called Anaplastic Astrocytoma.

Surgery and radiation therapy, with chemotherapy during or following radiation, are the standard treatments. Many clinical trials (experimental treatments) using radiation, chemotherapy, or a combination are available for initial and recurrent anaplastic astrocytomas.

We were told that this tumor is responsive to treatment, which is good. There are some tumors that simply do not respond to treatment. And those patients usually have to go through clinical trials to figure out what will work.

Dr. Larry Kleinberg is Jessica’s radiation oncologist.

So, Jess is now starting chemo therapy in tandem with radiation therapy on a daily basis. Her schedule will include driving to and from Johns Hopkins (40 minutes each way) five days a week, for six weeks. So, she should be done by the end of March.

During the appointments, she will receive a dose of radiation aimed at her right hemisphere. And one hour prior to the radiation appoint she is to take Temozolomide (Temodar). Even though the radiation ends after six weeks, she will still need to take the Temodar April through October.

“Why both chemo and radiation?” you ask.

Since chemotherapy with radiation significantly improves progression free survival and overall survival in glioblastoma multiforme patients (a much more aggressive tumor type), in the experience of her doctors, it will be just as effective for Jess’s case. We are hoping to basically turn off the division of tumor cells.

Her neuro-oncologist, Dr. Jaishri Blakeley, is very hopeful that the treatment will be effective. And this has given us reason to have more hope.

Sean has been granted seven weeks of paid leave from his employer (ADEA). We are benefiting from a paid leave donation bank that Sean could draw up to two months. Sean will be trying to squeeze in about three hours work a day so that he doesn’t use as much paid leave time. Luckily his employer has technology in place that enables Sean to telework. While he is home, Sean will be driving Jess to her appointments each day.

Below are some links to brain tumor organizations:

American Brain Tumor Association

http://www.abta.org

Brain Tumor Society

http://www.tbts.org

National Brain Tumor Foundation

http://www.braintumor.org

The Musella Foundation For Brain Tumor Research

http://www.virtualtrials.com

Thank you all for you wonderful support!

Jess’ Surgery UPDATE 1/2/2008

Jess’ Surgery happened on December 10^th 2007.

Her neurosurgeon, Dr. Alfredo Quiñones (aka Dr. Q) informed us that he successfully removed about 85% of the tumor from Jess’ right Lateral Ventricle (Occipital horn).

Because the brain swells after surgery, and creates extra spinal fluid, the Dr. Q inserted two drainage catheters to her head, and she had to remain in intensive care until December 17^th .

As she came back into consciousness, Jess was in horrific, cranial pain, because, Tylenol was the only pain reliever that the doctor would administer for a couple of days. Eventually, after 48 hours, Dr. Q allowed a light, narcotic-type pain medicine so that she could manage her pain. The surgery left her vision critically impaired.

The legion grew along the edge of the Occipital area in the right Lateral Ventricle, and the Occipital lobe is the part of the brain responsible for vision. The left side of her field of vision was impacted before surgery, and much worse post-surgery. Dr. Q thinks that as the brain “settles down” that she might get some vision back. But, there may have been permanent damage, too, which we won’t know for several months, probably.

As expected, the ordeal has caused Jess to have major fatigue. Part of this is due to the surgery, and part is due to the set of at least seven different medications she is on (but only one for pain).

Jess has been recovering at home since December 17^th. In the beginning, within the first two days of being back at home she had to go to the emergency room for extreme pain. Much later, we discovered that her spinal fluid was still in an elevated state of over production, or under re-absorption which causes Hydrocephalus (water on the brain). She was enduring three times normal pressure on her brain! We didn’t figure that out in the beginning. But once we called Dr. Q, she went back to Hopkins’ emergency room for a Lumbar puncture (aka spinal tap). And the third time turned into an actually hospital re-admission. After a series of lumbar punctures (spinal taps), she got some relief. And eventually her body re-absorbed the extra fluid (or that’s the theory).

On December 28^th, Dr. Q met with us as a follow up. During the meeting, he let us know that two pathologist have reviewed Jess’ specimen, and are in agreement that the tumor is a low grade Astrocytoma. Low grade Astrocytomas are less common than other tumors and therefore less familiar to doctors. The doctors don’t know why such a low grade (benign) tumor with slowly dividing cells would have caused the overall legion to expand so rapidly. Their opinion is that the underlying cells are not considered highly invasive and rapidly dividing (malignant). When we asked Dr. Q about the correlation between the coincidental increase in tumor growth and the timeline of her pregnancy, he told us that he didn’t think that being pregnant caused the tumor to grow. So, it is still a mystery.

But, the determination came as something of a relief. However we are not out of the woods yet.

Since 15% of the tumor remains, we are assuming that her treatment plan will at least include 6 weeks of radiation (5 days a week for 6 weeks) and daily doses of dexamethesone, a steroid that reduces brain swelling during radiation – but also has a host of bad side effects. Dr. Q is not recommending chemotherapy, however, because chemo is only effective on rapidly dividing cells. Jess has had radiation therapy in 2006 for the previous tumor, and we both have a sense of what’s this will be like for her. Recovery from the radiation treatments will probably extend her overall recovery well into summer. We expect Jess to have a lot of fatigue throughout her radiation treatment (starting in week two).

This was Jess’ third brain surgery in 6 years, with the last two surgeries occurring in 2006, and 2007. Both of the last two surgeries were needed in order to re-section two *different* tumors, and both were benign. While, it is possible to survive a life of undergoing brain surgeries every 2-6 years, each surgery takes quite a toll. At the least, the most immediate cost is the dispiriting of the patient. So, we will try to continue to do what we can to keep a positive mental attitude, keep trying to have a good sense of humor. Watching Jake grow and do different stuff every day has a therapeutic value beyond words. But, eventually, we are planning that more surgeries are coming down the pike. We know that our family is willing to offer more sustained support. In time more will be revealed about how best we can receive the support.

We have inserted a number of educational links about the kind of tumor that the pathologists reported, and more. This will give you an idea of what we are looking at as we begin the process of re-programming our lives.

As always, we are so very appreciative of the loving support we have received from family and friends (whether old friends, new friends or anonymous).

Low grade Astrocytomas

http://www.emedicine.com/NEURO/topic190.htm

Lateral Ventricle (Occipital horn)

http://en.wikipedia.org/wiki/Lateral_ventricles

Hydrocephalus

http://en.wikipedia.org/wiki/Hydrocephalus

Dexamethasone

http://en.wikipedia.org/wiki/Dexamethasone

Dr. Alfredo Quiñones

http://www.hopkinsmedicine.org/hmn/W07/feature1.cfm

The Brain Tumor Foundation

http://www.braintumorfoundation.org