Christmas time for Jake

Christmas time for Jake

Reprieve for Some Quality Time

A follow up MRI and exam indicates that everything is OK! What a relief! 

Every time that Jess goes in for a neuro-oncology exam, so much anxiety builds up upon itself like a Tsunami, pushing rubble upon water, upon rubble, forcing out all sense of order and direction. Then, in this case, a total calm after nothing bad is found.

These experiences make spending time with each other so much more valuable.

Jake went in for his first haircut this weekend. He was very good natured throughout the entire experience. Mostly, he was curious more than frightened. His barber's forte lied in her ability to calm & entertain her child customers while cutting their hair.

We saved locks of Jake's hair and have it for sale on eBay. Open bid starts at priceless.

Welcome to concierge medicine

In November we received a form letter from a firm called MDVIP on behalf of our family doctor that he is transitioning his practice to a "concierge medicine" model. In other words, he will have to reduce the size of his practice to no more than 600 patients, and each patient will have to pay a $1,500/ year retainer fee up front. This will start December 30, 2008.

The letter stated that the benefits are that the doctor can spend a lot more time caring for each patient. Also, same day appointments would be possible. It went on to explain that he would like to work with each patient in a more holistic way, because studies have shown that this helps reduce hospital visits, and shortens the hospitals stays. Lastly, there would be greatly enhanced medical informatics with beefed up physicals involving very state of the art technology. And every patient would receive a CD with all their medical history so that if we were ever away form the area, and had to go to a doctor, we could see an MDVIP doctor, and just give them the disk --saving tons of valuable time.

The letter invited us to attend an event in Bethesda where our questions and concerns would be addressed. There would be four times all facilitated at he Bethesda Hyatt in one of the meeting rooms.

I went to that event with Jake. There were about 300 people in the audience sitting schoolroom style facing a big projection screen and podium. Jake was the only child in the room.

OK, the benefits sound good. I wish that were the normal care, however. It really ought to be the norm.


This is really crappy timing for us as we are recovering our lives and kind of in a very vulnerable state.

This "concierge medicine" model creates a two-tier access to care => the haves and have nots. Insurance should cover the cost. We could tuck away $3K into flexible spending, but then we would not be able to cover other bills -- several out of pocket medical bills.

Halloween's Treat

Halloween is Jess' favorite "holiday". So, I was so happy that she was actually feeling pretty good. I commented to her that "this was the first time in three years that [she] has felt well enough to participate" in Halloween. I take this as a good omen. So, Jake dressed up like a black cat, and we attended a Halloween hob-nob thrown by a neighbor in the next block, and met a bunch of other neighbors. I had no idea how many children we had in our midst until last night! But we arrived a little late, and we arrived just in time to observe those wild race horses flee the restriction of their gates; other families' kids went bounding from the house to make their respective trick-or-treating rounds. So, the house was practically empty when we walked in, which was nice, because this gave us a comfortable opportunity for quieter times with the hostess and her two little boys who are close to Jake's age. I saw him actually play with her 9 month old which was rewarding. Also, it was good for both of Jake's parents to socialize in a way that is so immediately relevant. Our part time baby sitter also watches the hostess two boys on the days when she is not with us. And sometimes she walks Jake over there for play time. So, Jake was more right at home than his parents, were! The hostess, also a stay at home mother, offered that if Jess wanted to come over --at any time -- with or without Jake, that she is welcome. It seems that after spending so much time sort of couped up --  in cancer treatment mode -- it is a relief to spread out and find people, who live in the neighborhood,  just so friendly, and so generous. Later, Jess and I took Jake to some other neighbors for greetings and candy solicitation. He is so young that he doesn't have a clue. He was a tired little kitty by the time we returned. And so he circled in his crib three times, kneeded his blanky for several minutes, and took a big cat nap.

"I just want to be done with it"

We couldn't make it to Jess' appointment with her neuro-oncologist on Monday. She wasn't feeling well and was sort of freaking out about the prospect of having this disease for the rest of her life -- kind of too panicky to go. She said that she just wants to be done with it. The time and energy commitment itself is staggering let alone the notion that if nothing is done there could be chaos down the road. Add parenting a one-year-old to the mix -- that is a lot of pressure for one person who is still recovering from brain surgery even almost a year later. So, we stayed home. she took a big nap. and I worked from my home office and played with Jake -- who is now walking like a champ.

Small, unmeasureable remnant remains

Jess' appointment with Dr. Q happened on Tuesday (two days ago).

He was very positive about everything, and said that Jess looks so much better and healthier than the last time he saw her. Both he and his Physician Assistant Raven were so pleased at how her scans look.

And he said there is only a small, un-measureable remnant remaining that is not really even quantifiable.

So, this made us very anxious of course, as it was the first time in more than four months any one has indicated any tumor remnants. Dr. Q expects that the good progress will continue.

Jess will have the option of continuing with Temodar. But we will discuss this next week with Dr. Blakely.

Another Clean Scan

Yay...Another clean scan for Jess on September 24th! Also, she completed the sixth and final round of Temodar at the begining of October. She is getting so much of her energy back!

Jess has a 10 month follow up appointment wiht Dr. Q on October 14th.

Having a therapeutic effect is our little boy, Jake.

He just turned One on August 15th.

A Clean Scan

Today we had a long day at Hopkins, but the bottom line is that Jessica had a clean scan, and Dr. Blakeley is very happy. The 2mm anomaly that was detected at the beginning of July has vanished.
So, we are absolutely thrilled! And tired from a long day. The longest part was waiting to get into the MRI machine. We waited for two hours. Back at home now, we can relax knowing that the treatments are indeed working.

We hired a mothers helper ( her name is Deli ) to come in on Thursdays and Fridays from 8am - 2pm. Jess has Jake on Tuesdays and Wednesdays on her own while I am at work. And on Monday I telecommute. So, everything is working out well with that arrangement.

Jessica seems to be getting stronger by the day!

We went for an MRI on July 7th. Basically Dr. Blakeley is very pleased with the progress, however the image did detect a 2MM growth in the middle of the radiation field. Dr. Blakeley said that radiation does strange unpredictable things in the body, and that mostly these things go away on there own. However, as a precaution, she is having Jess come in for MRI's monthly instead of bi-monthly.

The next MRI is July 28th 2008.

Please keep us with your positive thoughts!

:)

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