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.
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 email@example.com or Rick at firstname.lastname@example.org.