Saturday, April 29, 2006

Update as of Saturday April 29, 2006

Hello Everyone,

Isn't it amazing the response that we are getting at this site. All over the world people are reading and praying for our daughter. Thank you so much.

Today, we thought we would answer some questions about what goes on at St. Jude. What is it like? How are the people? What does Maria do every day?

First of all, St. Jude is located in a neighborhood that is very close to downtown, so security is needed. St. Jude Children's Research Hospital was founded by entertainer Danny Thomas and opened in 1962. It is supported primarily by funds from volunteer contributions raised by its national fund-raising arm, ALSAC, (American Lebanese Syrian Associated Charities) which was established by Danny Thomas expressly for the purpose of funding St. Jude. The hospital also receives assistance from federal grants (mainly through the National Institutes of Health and the National Cancer Institute), insurance and investments. The hospital's daily operating costs are approximately $1,146,616, which are primarily covered by public contributions. St. Jude has more than 3,130 employees.

There is your history.

One great thing about St. Jude is that everything is located in the same hospital. The main hospital is a four story building that has the same foot print as Fairview Hospital in Cleveland. On the main floor, there are 5 different clinics. These clinics are based upon what type of cancer you have. For example, A Clinic is for Leukemia and Lymphoma Cancer. Maria is in E Clinic, which is the Brain Tumor Clinic. Also on the main floor is the Dental Clinic, The Eye Clinic, The Rehab Clinic, Radiation, MRI, Recovery, Triage, Registration, Medicine Room, Pharmacy, Gift Shop, Social Workers Offices, Dietician Services, a Chapel, and the Cafeteria. The second floor has a library and computer lab, Chaplin Services, and Patient Rooms. The basement (called the Plaza Level) has Patient services, Patient Supplies, and a school.

Maria has been to all these places in the first week.

The Rehab Clinic has Physical Therapy, Occupational Therapy, Audiology, and Speech Therapy. By the way, Occupational Therapy is working with fine motor skills like writing or cutting with scissors, etc. -- I didn't know what OT was so I am telling you hoping that most of you didn't know either.

Both the Dental Clinic and Eye Clinic are small and have only one Dr, but they are very busy with two to three rooms each and they have all the latest technology and they see every patient.

Triage is where all the patients go at least once a week to draw blood, get weighed, and have vitals checked. This is so that they can keep an eye on the blood counts and such.

Recovery is for all the patients that get sedated before their treatments like Radiation, MRI or CT Scans. Maria is there every day.

The Medicine Room is where all the patients go for transfusions, bone marrow, and after hours check in. Maria has only been there once when we first arrived at St. Jude at 8pm.

In the E Clinic is where Dr. Amar Gajjar checks on Maria and monitors her progress. This is where we meet to discuss everything. This is the main office for Maria's doctor. Maria goes there about 2-3 times a week.

We are sure that we are forgetting some things, but we wanted to give you an idea of what this place is like. We could only imagine having to drive all over town to take Maria to all these places if we were in Cleveland or some other place. This is a great place.

There are many other buildings that are part of the main complex. The other buildings are research facilities, administration offices, ALSAC building, the Grizzly House (St. Jude Hotel) and the pavilion where Danny Thomas and his wife are buried. ( He died in 1991).

We hope that helps you better understand St. Jude.

Well, as always, on to the important item--Maria.

Maria did well after her surgery to have her "port" put in on Monday. Mom got to see the actual radiation treatment part for the first time on Tuesday. Everything seems to be going well. A concern that we have today is that Maria's red blood cell count dropped from 13.9 to 10.7 and that is not great. They are going to watch that over the next week or so to make sure it doesn't get worse. They say that if it gets to 8 or 7, they will probably give Maria a transfusion. They say that this is very common for receiving radiation treatment and Chemotherapy.

By the way, here is something that we found out most of you don't know, Maria does NOT spend the night in the hospital at St. Jude. She has come home with us every night. We are hopeful that it will stay that way until her treatments are over. (Predicted to be June 2 so far, but that can change)

Maria loves being back together with her brothers and mother. She even gets into a fight every now and then. She, by the way, has learned how to play UNO and is really good.

Medically, there is still no improvement in her condition. Her equilibrium is still off, which causes her to be very afraid of heights and gives her a lot of trouble walking; the right side of her face is still drooping; she can't drink out of a straw on her right side; she is 100 % deaf in her right ear and she has trouble swallowing.
The world renowned radiologist Dr. Larry Kun, who is the one performing her daily radiation treatments (well, he actually just makes sure they are going well, he doesn't actually do the treatments), says that we won't know how effective these treatments are until we do another MRI in about 3 weeks. They used to do them earlier, but after two weeks there is never any noticeable change in the tumor. He says that normally we should start to see some improvements toward the end of her treatments. (Remember, radiation is still working and shrinking the tumor for up to 5 months after the last treatment.)

So, on to the next week.

Thank you everyone for everything.
God Bless,
Ed and Megan

P.S. So many people have asked for our address. The house that we have rented may not accept mail or deliveries, because the mail carrier and delivery people have been instructed and trained to drop everything off at the church.

The hospital is a great place for us to get mail and packages. Everything must be mailed to Maria. Due to the fact that this is a public website, we don't want to give out that information. If you want the address, email Ed at or Rick at

Monday, April 24, 2006

Update as of Monday April 24, 2006

Hello Everyone,

Sorry for the delay. We have moved again and will not have access to the internet until late Wednesday.

As some of you may know, our family is now together. Megan and the boys did not come down until this past Saturday. It was very difficult to find a place to live. All of the housing at St. Jude would not allow more than 4 people in it.

We looked all over for a furnished home to rent until the end of Maria’s treatment which is supposed to be early June. The problem is that anyone that is trying to rent a house only wants to rent for a year. The only other option was to rent an apartment. As you may imagine, corporate housing is very expensive but that was our only choice.

Until a miracle struck again, that same close friend that helped get us into St. Jude, called their local catholic parish, St. Francis of Assisi in Cordova, which had an extra home on their property to see if it was available. The kind pastor here, Fr. Peter, offered the home for us to rent. What a kind offer. We moved in Saturday. It is clean and in a very nice neighborhood. As we walked around the premises, the miracle continued. There is a pool in the backyard, that is up and running!! The last three days have been over 80 degrees and the boys are having a ball.

Maria had not seen her mother or brothers in almost a week and she was so happy to see them. You really don’t realize how important keeping the family together really is until it was broken apart and then put back together again.

Having to move into a home for 30 days is a lot of work. We are just trying to get into a routine. Ed's dad drove the family van down for us....13 hours. Thanks dad.

Megan’s sister, Maureen, came down with our family to help get us acclimated and to let dad and mom go to the hospital together with Maria. Having Maureen down here is another miracle. She is so much help; we don’t know how we could have made it these last few days without her. We want to thank Maureen’s family for making the sacrifice of being without their mother for a while so that she can help us. Thank you Sidors.

Now, on with the most important item, Maria.

Today was not a great day for our angel. Today Maria had surgery to have a “port” placed into her chest. For those of you that have never heard of a “port” it is an access area that is placed under her skin that gives the medical team a quick and direct access to a major vein so that they can place an IV in easier, or draw blood or give her medication faster. It will actually be better for Maria because now they won’t have to stick her every other day to put her IV in. It is just difficult for a 6 year old to have surgery, radiation and Chemo all before lunch.

Today was day 6 in her treatments. We are going to have 30 treatments of radiation Monday through Friday with the weekends off. That puts us home close to the end of May or early June.
Let me explain how these treatments work so that everyone is up to speed. We are currently using radiation with Chemotherapy (Tarceva) on the tumor in her brain. The radiation is a small dose every day. After the 30 treatments, the radiation continues to try and shrink the tumor for somewhere up to 5 months.

So what does this mean? This means that Maria will take a while to start to heal. She is still not back to anything close to normal and in many ways seems to be getting worse. But we are told that this is normal. The doctor says that if she takes to the radiation, then we should start to notice some improvement in about 4-6 weeks.

Over the next few months, the tumor will hopefully then shrink into nothing, but normally the tumor only shrinks to where it might not have that much of a noticeable affect on Maria’s motor skills. If the Chemo and radiation don’t eradicate the tumor, it usually comes back in normally about 4-6 months or more and then starts to grow again. If this happens, there is only relapse treatment to try, which usually does not have any effect. So as you can read, we are really counting on the miracle of Mother Teresa, Pope John Paul II and God.

Hopefully, we can get our family back into some type of routine and get some “normalcy” into everyone’s life.

Thank you everyone for the continued prayers and love.
Ed and Megan

Please check out the addition to the website of the noon rosary.

Tuesday, April 18, 2006

Update as of Tuesday April 18, 2006

Hello everyone,

It has been almost a week since we were able to post from the battle field. Maria and dad, as most of you know, are at St. Jude Children’s Research Hospital in Memphis, Tenessee. What most of you don't know is how we ended up here. So here comes the long story for those that want to know.

We spent over week researching about 30 different studies. A few of them were:
  • Topotecan and G-CSF with radiation
  • Temozolomide with radiation
  • Arsenic Trioxide with radiation
  • Thalomid and Carboplatin with radiation
  • Gefitinib (Irrissa) with radiation
All of these are considered treatment for newly diagnosed tumors. From this research, we found that the Gefitinib, also known as the 007 study, was the one that everyone was starting to use as the standard protocol. Its showing signs that it can extend the "quality of life" about 4- 6 months more than the standard 4- 6 months. What it didn't seem to show was a cure.

So, Dad and Maria took a trip to meet with Dr. Stewart Goldman of Children's Memorial Hospital of Chicago. He has a study that uses Thalomid and Carboplatin with radiation. He has tested 39 children and one is still living after 4 years, but the rest of the study is consistent with other treatments and shows no real cure or any great time extension of "quality of life". Dr. Goldman is a great man and truly wants to cure Maria's exact type of tumor. We felt very comfortable with him. We just felt that the chemo used was a little harsh with hair loss and 4 hours of treatments per day. It’s a great treatment by a great group of people but it was not a cure.

Knowing this, we continued our search and learned that several of these top doctors were thinking of trying a drug known at Tarceva. This drug, like many of the others in the studies listed above, has been proven to kill cancer in adults. We wanted to use it because we are looking for the cure. In discussion with Duke Cancer Center, they said that they would use Tarceva in what is known as a "non-protocol" study and that they are very confident that they know the appropriate dose levels to use. They also talked about using our case as a possible start of a new study. We were very excited about going to Duke. The medical team there of Dr. Friedman and Dr. "G" are world renowned.

The evening before we left and after the last post, we were able to talk with Dr. Amar Gajjar. He is the vice chairman of Pediatric Oncology for St. Jude. We told him that we have looked at most of the studies and that we wanted something more for our Maria. We wanted something that has a chance of being a cure, not something that has been proven not to be a cure. We told him that we were leaving for Duke in the morning.

Dr. Gajjar than went on to discuss how St. Jude is already working with Tarceva and that they know the dose levels for children. He also stated that they had not tried Tarceva on a brainstem Glioma (Maria's type). We discussed the "non-protocol" study of Tarceva and he told us that he wanted us to have the type of treatment that we felt most comfortable with. Knowing that St. Jude only works with children and that it is truly a place of miracles, we packed our bags on got on the next flight to Memphis. That was Wednesday of last week. After a lot of testing and planning and a wonderful and blessed trip home for Easter, tomorrow Maria will start her first day of radiation and Tarceva treatment.

There was a lot of other information that many people sent like Protocel, Cantron, Animal Venom, and more. Most of these are either "natural" treatments or "relapse" treatment. Both of which we can and may try. "Natural" treatments can be done at any time because the products are supposed to be all natural and shouldn't affect current medical treatments. The relapse treatments are used if the current treatment does not work or if the tumor starts to grow again after we shrink it. So if there is a relapse, there will be a lot more research that will need to be done. As you can see from this long post, we are consumed by the entire process.

We have to thank all our friends and relatives for all the medical advice and information that we have received. We are now experts in brain stem Gliomas.....Probably because we stayed at a Holiday Inn Express last night.

So, now let's get to the most important part of this posting - how is Maria?

Maria has been poked, prodded, stuck, pitched, scratched, and otherwise just hassled on a hourly basis. It really hurts. It hurts deep. It is hard to get up every day knowing that another test or doctor awaits her. But that is how her dad feels. Maria has been an angel through it all and has not cried once. She constantly makes every doctor smile and every nurse wishes she was theirs. She is an inspiration. She gives her dad the strength to continue on with the miracle. She constantly talks about her friends and cousins, but mostly about her brothers and mom.

She is excited to go swimming and to go to Disney when her treatments are finished. It is amazing what a 6 year old can teach a 37 year old.

We must say again and again that our community, neighbors, friends, and family have been so wonderful.

Thank all of you for caring. God Bless you.
Ed and Megan

Friday, April 14, 2006

Update as of Friday, April 14, 2006

Hello Everyone,

Today is Good Friday. As I write this to you Maria is having an MRI done at St. Jude’s in Memphis, Tennessee. This is where we have decided to take Maria for her treatment. Maria is there with her Dad right now and the boys and I are anxiously awaiting their arrival home this evening. We are not complete without them.

Ed and Maria will have to return to St. Jude’s on Easter Sunday to begin Maria’s six-week treatment. The boys and I will join them. Right now we are trying to figure out logistics.

We want to personally thank all of you for your prayers, gifts, thoughts and love. Ed and I are truly overwhelmed by the love and support we continue to receive on a daily basis. When we are at our lowest somehow someone or something comes along to lift us and we continue on. Before all of this, I don’t know if I would have believed there to be so many wonderful caring hearts in this world. Let me assure you that now I know there are and I hope this can be encouragement to all of you.

Somehow in all of this we have to find meaning. This can be very difficult for us. I often think of the prayer from St. Therese of Lisieux that I have turned to many times in the past:

Everything is a grace … Everything is the direct effect of our Father’s love, difficulties, contradictions, humiliations, all the soul’s miseries, her burdens, her needs, Everything, because through them she learns humility, realizes her weakness. Everything is a grace, because Everything is God’s gift. Whatever be the character of life or its unexpected events-to the heart that loves, all is well.

I hope that many of you can find comfort from this in your own lives.

Ed and I hope and pray for a miracle for our Maria. How much good she has left to do here. We knew she was so special from the day she was born. So bright. So loving. So wonderful. So thoughtful. We believe there are great things in store for her. The world should have the opportunity to know her and share in the gifts she has to offer.

I hope we can all be witnesses to the miracle of God’s eternal love for us. As a friend of mine just wrote me: "Maria will show us the awesome work that the Lord can do." I believe this. Thank you for your continued prayers. They will move mountains.

Ed and Megan

Tuesday, April 11, 2006

Update as of Tuesday April 10, 2006

Hello Everyone,

First of all, we want to thank everyone for all the prayers and support. We can not tell you how many phone calls, emails, meals, gifts, and most importantly, PRAYERS that we have received.
Thank you everyone. Just the support from our friends, community, St. Raphael's, neighbors and family in and of itself is a true miracle. THANK YOU, THANK YOU, THANK YOU!!

We are truly counting on Mother Teresa to provide us with a miracle.

Here is where we are as of the end of today.
1. Maria loves connect the dot books and crafts.
2. She loves her brothers, her friends and most importantly, her mom. She gets mad at her dad for everything else. She is on a heavy dose of steroids which makes her really hungry and sometimes cranky. But that is what dads are lean on when they need a shoulder to yell at.

Monday Maria and Dad went to meet with Dr. Stewart Goldman at Children's Memorial Hospital in Chicago. Dr. Goldman has an open spot on a Clinical trial that works with Thalomid and Carboplatin. Dr. Goldman's study is considered a Phase II study in the PBTC.

So, let us explain that in real simple terms. First of all the PBTC stands for Pediatric Brain Tumor Consortium. This is a group of 12 hospitals that share ideas and clinical trials throughout the US. It is headed up by St. Judes in Memphis, TN. There is another group called the COG (Children's Oncology Group) that also does clinical trials. All 12 hospitals in the PBTC are also part of the COG. There are about 200 hospitals in the COG.

Clinical trials are set programs that test different types of drugs/therapy at different types of levels to try and find a cure. The key word is trial. Maria has a very rare brain tumor and as of today there is no known cure. The average life expectancy is about 12 months.

So, as parents that love her more than anything, it is our responsibility to pray a lot to God and try to find a clinical trial (study) that may give us more time or a cure for Maria. (We are confident that Mother Teresa will pull through)

We have spent the last 9 days talking to every doctor we could. The end result is that we are trying to get Maria into a Phase II study. (there are no Phase III studies out there because that is closer to a cure and we just aren't there yet).

The problem with studies is that they only allow a certain amount of patients and then they close the study. This is where many problems come into place. After doing extensive research, we found 2 or 3 studies that we feel gives us a better chance than the others. We have since spent about 5 days just trying to get into one. After realizing that we can not get into the ones we wanted, we then had to call all these famous doctors back and ask them if they would still do the study, but just not an official one.

That is what we are trying to accomplish. We found a few that will use a "study" protocol without actually being in the "study". This is good and bad. Not being in a study is not good. Getting Maria the newest treatment may be great.

Some more bad news, the Cleveland Clinic and University Hospitals do not officially do "studies". For those "experts" out there, I want to be more clear. What I mean is that neither hospitals are certified as a Phase I, II or III facility. They can, under certain conditions provide the actual study locally if the study chairman allows it. They can in some cases just try their own...

So where does that leave us today. We are narrowing it down to two options, Duke Cancer Center and St. Jude. Duke has already agreed to provide a Phase II study with the drug that we want. Basically, doing the study outside of the official study. St. Jude is thinking about it.

We hopefully will know these answers tomorrow. We are supposed to leave to Duke tomorrow for a visit on Thursday, but we do not know if we are going until we hear back from St. Jude and we make our decision.

Hopefully this gives you some ideas of what we are trying to accomplish.

Thank you everyone who has answered the research questions. They have been very helpful. Three more will be published tomorrow.

The email address in the research request goes directly to us, so if you need to reach us and don't know our number or just don't want to call, please email. Just keep one thing in mind. We get over 50 emails a day and it is hard to respond to all of them...but we try.

We will try and post something every other day in the beginning until we get situated and then probably weekly.

Please keep the prayers coming. It is the prayers that keep us going.
God Bless
Ed and Megan

Friday, April 07, 2006

Update as of Friday April 7, 2006

Hello everyone,

Thank you for coming to Maria's blog site. We will try as hard as we can to give you a lot of information on what is going on.

Maria was diagnosed on Saturday 4-1-2006 with a Diffused Intrinsic Pontine Glioma by the Cleveland Clinic. Since this is a rare tumor, we have had to call every major hospital in the country. As of tonight, we still do not have enough information to make a decision.

We did not leave for St. Jude's today like someone asked me. We still have not spoken directly to St. Jude. That should be tomorrow. We have spoken directly with the top doctors at many institutions. We find it comforting that the actual director or section head or chief surgeon all talk with us directly and usually for and average of 40 minutes.

This week we have sent Maria's MRI to about 10 institutions. We have taken Maria to Rainbow Babies and Children's for a second opinion. We had a lot of help from a lot of friends to get a meeting with the world famous Allen Cohen. He spent time with us and a team of doctors looking over Maria's MRI and discussing our options. Not surprising, they diagnosed Maria with the same tumor.

So, since then we have talked with Boston Children's Hospital / Dana Farber Cancer Institute, Children's Memorial Hospital of Chicago, Duke Cancer Center, John Hopkins, MD Anderson, Children's National Medical Center in DC, Cleveland Clinic, University Hospitals and probably more.

We have looked at over 50 different studies and we are still looking. We know that we have to make a decision, but the more we learn, the more we have to make sure.

We should have a final decision by the end of next week and Maria should start treatment, no later than April 17, 2006. -- end of post