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 emcnamara@productioniq.com or Rick at rick.reddy@gmail.com.

13 comments:

Mrs. Ritzler said...

Hi Maria!
We miss you so much in kindergarten. Our class is not the same without you. The children and I pray for you and talk about you everyday.
I miss your fun laugh. It always makes me smile!
Keep smiling for your mommy and daddy.
We love you so much!
Jesus loves you too!
Love, Mrs. Ritzler

Micheal Lavelle said...

Maria,
Do us all a favor and keep an eye on that dad of yours....

Ed and Megan - you are in our family's prayers every night.

The Lavelle's

Anonymous said...

McNamara Family-
We are from Fairview Park and have been touched by this website. St. Angela Merici has added Maria to our daily intentions and we will continue to pray for all of you!
God Bless.

Anonymous said...

Ed,Megan & our precious little Maria,

I am Jeff Simpkins mom from Tennessee and we have had several get-togethers from Easter on through Saturday night and we are always praying for Maria. Some say when I talk about her,it is as if she were my own grandchild. I do so believe in miracles and the awesome power of prayer. Our God Is Such An Awesome God so we are all petitioning God for Maria's miracle and confort thru this difficult time.

I put together a group of your pictures and carry them with me always. There will be some donations mailed to your bank in the next few weeks as several have mentioned doing that.

Thank you so much for this web site as I go there every night before I go to bed! May all of you continue to stay close and God's Blessings be upon you all.

Much Love, Karen

Wohlwender Family said...

Ed and Family,

Letting you know we are thinking of you. Please let us know if you need any help or insight into anything. Never give up hope.

The Wohlwender Family

Laura Notarianni said...

Mother Teresa said that "Prayer enlarges the heart until it is capable of containing God's gift of Himself. Ask and seek and your heart will grow big enough to receive Him and keep Him as your own." I continue to pray for your family through my "mental prayer" and "spiritual reading" as inspired by Mother Teresa. Quietly we're praying for a miracle. The Notarianni Family

anne said...

McNamara Family,

We miss all of you here very much. Maria is in our thoughts and prayers each day, as well as the rest of your family. The power of prayer is unbeleivable when you put your faith in the Lord. We will keep your beautiful little angel in our prayers, the boys, and yourselves.

Our family at home and church continue praying for Maria's miracle.

Anne & Claire Storer

Anonymous said...

Thank you both so much for the updates. It really helps me. My love to all and prayers...
Aunt Kathy

Anonymous said...

Your website is awesome, I don't have to bother Caroline anymore to know how everyone is doing! Just a quick note to let you know that you are all in our prayers everyday and think about Maria often, praying for your miracle. God Bless all of you,
Paula

Anonymous said...

This is such a wonderful website! My son is in Mrs French's class and asks about Maria and I can tell him how she is doing. She is such an inspiration to all of us. What a brave little girl! Please know what an inspiration you, as parents are too. I am so astounded with how much you know and how much you've done! It is inspiring to me because I hope that I would have the courage to do the same. The three of you have allowed us to refocus on the power of prayer and made us realize how great God is. He has pulled many people together for a common prayer, which is Maria. We, like so many, pray for Maria each night. But, I also pray for you, her parents. That God will continue to give you courage and hope. It is said that "with prayer, all things are possible".
Think of you often,
Wendy Mark

Anonymous said...

Our prayers out with you all day!. Maria is such a beautiful angel...I believe that a miracle will happen with the power of prayer.

Stay strong!!
Love,

Katie, John, Kaili and Lizzie

Anonymous said...

Dearest Maria:

Please pray:
God, you are the Lord.
Lord, let me be strong.
Let me be strong today,
And let me be stonger tomorrow.
So that I may show others
Your powerful goodness and
gifts.
Amen.

Anonymous said...

GOD BLESS - YOU ARE BEAUTIFUL