Project Description

Katie A.

In February we were sent to the children’s hospital for a spinal tap test to see if Katie had meningitis. The spinal tap came back clear but the ER doctor wanted to have a CT Scan done to see where the pain was coming from in her neck. A few hours later we were sat down and told that Katie had a brain tumor. Our world came to a sudden stop. A neurologist came in and spoke with us and told us that Katie had a lot of pressure in her head and he wanted to drain the fluid pressure by doing surgery that night and putting a drain in her head. After the 45 minute surgery we were told that everything went great and they were very happy they put the drain in because the pressure in her head was 30% and normal pressure is 15-20%. The next day Katie had an MRI done which revealed a total of 4 tumors. Three of the four were in her brain and one was on her brain stem, on her spine. The next day, Katie had emergency brain surgery, 8 hours long to remove the tumor that was on her brain stem on her spine. The doctors mentally prepared us for her to be completely unconscious for the next 24-48 hours to control the swelling on her brain as well as having tubes in her and all over her body. When her surgery was complete the doctors came into the waiting room with the biggest smiles on their faces and said, “She’s awake, smiling, and talking…She’s a FIGHTER!” They couldn’t believe it!!! God and a whole bunch of angels were watching over her that day. We stayed in the hospital for about 2 1/2 weeks after that. We were home for 2 weeks before we went back to the hospital to begin chemotherapy for next 6 months.

The first cycle of chemo went great until we got home. Four days into us being home Katie became very dehydrated, couldn’t keep any food, water, or medicine down. She lost a lot of weight and became very pale. I took her into the ER and we ended up being in the hospital for 1 month and 1 day. Most of that time was spent in the PICU. One of the chemo drugs caused Katie’s lining in her stomach to be torn out which is called typhlitis. Before going home Katie had a GTUB put in her stomach to help with meds, feedings, hydrating, etc., it has been wonderful! The last 2 cycles of chemo have been great for Katie. Her oncologist decreased the percentage in two of the chemo drugs to avoid another first cycle experience. We have been home now for about a month since completing her bone marrow transplants and chemotherapy. Katie has had two MRI’s since completing chemotherapy and we were told that all the tumors were gone except for a small dot that the doctors are unsure is active tumor or not. With all that being said we were so excited and happy with how far we have come and accomplished!! Our world was shaken and rocked only two weeks later. While at a follow up appointment for labs we were told the Katie type of diagnosis has several categories and the one that Katie falls under is called Anaplastic Medulloblastoma. This means that she is prone to relapse and has a 30 to 40 percent survival rate. We were given the options to begin oral chemo for 1 to 2 years or to begin radiation. We will be meeting with the radiation doctor soon to discuss the steps for radiation but have been told of the side affects which could mean Katie becoming mentally challenged due to Katie being so young. We have started oral chemo at home and so far it has gone well. We have our next MRI on March 10th to see if the tumors have shrank more or have grown….we have complete faith that God will heal Katie. We are far from being done with this battle but we will not give up! We know Katie was put on this earth for a reason and she has touched so many lives already with her story. We are hoping and praying that all goes well and after all that Katie has endured, we can say, “We Beat Cancer!!!”

Rally For

Medulloblastoma