It's time for a cure. . . It's time for a cure. . . It's time for a cure. . .
It's time for a cure. . .
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This is Slade's story... Slade is a 4 yr. old boy with severe hemophilia A Factor VIII deficiency. On Friday, May 18th he was diagnosed with Leukemia--Acute Lymphoblastic Leukemia (ALL). How it began...In March of this year Slade began having severe nosebleeds. They would start like turning on a faucet. Which was not uncommon to his hemophilia except they were more intense and hard to stop. Slade became very pale and looked 'anemic'. We contacted our Hemophila treatment center (HTC) and they suggested we get a CBC at our local Pediatrician. Which we did on April 13th. The results showed a slightly low WBC and low RBC, HGB, HCT. We assumed he was a bit anemic from the bleeding and thought he would recover. During this time Slade's port-a-cath had become nonfunctional. (He got the port when he was 19 months old. The port was surgically placed so he could more easily receive his Factor VIII. Factor VIII can only be given intravenously. Hemophilia is a lifelong disease that he will not 'grow' out of.) We made an appointment with the surgeon to have the port removed. We contemplated a lot over whether or not to put another port in and decided that since he was tolerating vein sticks into his hands and arms that a port was not needed. This was supported by his HTC and was optimal for him. On May 2nd his port was taken out and another CBC was done. Upon discharge we were instructed to have another CBC done the following week b/c levels were just a bit lower. So, on May 8th we had another CBC done at the local pediatric office. Over the weekend the pediatritian contacted us and asked that we come in b/c his WBC kept getting lower. On Monday May 14th we saw our local pediatritian and they suggested that the HTC have a look at the labs. The HTC was contacted about the labwork. The HTC told us to have another CBC done and that we had an appointment on May 17th to see the pediatric hematologist/oncologist. On the 17th another CBC was done and we were told that a bone marrow aspirate and biopsy were necessary to determine what was happening with Slade. We were also instructed to pack a bag for the weekend. May 18th we were told that Slade had Acute Lymphoblatic Leukemia or ALL. We knew nothing about ALL. We were not sure what to do or where to turn. We were also told he was neutropenic and needed a special diet called 'low bacteria diet'. On May 19th Slade's "guardian angel" called us to explain that we had options/choices for treatment. She was frantic and nearly out of breath when she asked if we had began chemo yet. He had NOT. She was ecstatic. She suggested we research St. Jude Childrens Research Hospital. So we did. On May 20th after much prayer, research and investigation we decided that we needed the best available treatment for our son. So we chose St. Jude Children's Research Hospital. May 21st we took the first flight out to Memphis, TN. None of us had ever flown. I in particluar was PETRIFIED. We arrived at St. Jude at about 8 am. No time was wasted. We were promptly registered, triaged, and meeting with hematologists, oncologists. surgeons, nurses, social workers, etc. We were given massive amounts of information on A.L.L. and treatment options. By that night it was evident that our prayers were answered and our son was receiving the best care available to him. We were impressed and even blown away by the entire staff's attitudes and care for each individual of our family and especially Slade. A treatment plan was created and presented to us for approval. We felt that our expectations for treatment were met and greatly exceeded. May 22--Slade was prepared for surgery today. He received a Hickman line instead of a port-a-cath b/c his Absolute Neutrophil Count was below 500. (among other reasons) He also had a bone aspirate and spinal tap. Later today he had an echocardiogram, 12 lead EKG and ulltrasound of testes. The Oncologist said that he does NOT have any visible leukemia in his spinal fluid...which is very good news. Chemo began today in the spinal fluid and tonight intravenously and orally. He is feeling much better tonight than previously this morning. He has been afebrile! Go to Slade's caring site, check in, read his journal, look at his photos and leave him a message use this link to get there http://www.caringbridge.org/visit/sladeboihem |
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3636 S. Sherwood Forest, Suite 450 Baton Rouge, LA 70816
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