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Tue. 4/29/03 - Diagnosis

Tuesday 4/29/03
Tuesday morning Jason and Cillia ate breakfast at Grandma’s and then left for the hospital. They unfortunately were stuck in traffic on the freeway because of an accident ahead of them. Because of the delay, they were not there when the morning rounds were done. A speech therapist and occupational therapist did a swallowing study with an ice chip and a sip of juice. Les is NPO until Wednesday 4/30/03 – that means he can’t have food or drink. His nutrients are being fed to him through an IV. The reason for this is because the tumor was very close to the nerves that control swallowing, speech, breathing and other critical functions. They want to make sure that all nerves are working properly before they allow him food or drink.

Les slept most of Tuesday. There were a few more visitors on Tuesday. Only 2 people are allowed into the ICU at a time, including parents, so while Jason was out, Julie Northway and Lori Kestle took turns coming in and visiting with Cillia. After they left, Kelsey Lick came for a few hours.

Les’ MRI was scheduled for 5:00pm, but there was a cancellation and he was able to go over at about 12:30pm. Kelsey was available to stay near Les while he was in the MRI and Jason and Cillia went to eat lunch. After the MRI, Les was moved back over to IMU (intermediate care). He continued to nap most of the day.

Dr. Gedis, the oncologist, came to give us the pathology report on Tuesday afternoon. They talked with her for almost an hour. More details of that meeting will be available later, but here is a summary:

The tumor was malignant (cancer). It has a name – Medulloblastoma or MB for short. After a few weeks of recovery from the surgery, Les will begin a radiation and chemotherapy program that will last 1 year. This will be focused on his brain and spinal column in order to get rid of the small spots on the spinal column and any remaining MB cells in the brain.

This information generates many more questions, and Jason and Cillia are just starting to process all of it. There are many sources of answers here at the hospital. Many different people from the hematology/oncology ward (hem/oc) have sought them out already. Parent Advocate/Liasons offer support groups, fundraisers, practical advice from parents who have walked this road before as well as other services. Social Workers offer help with dealing with logistics in life – getting leave from work, etc. Child Life workers are trained to work directly with Les and help him adjust to his new surroundings and procedures. There is other support staff as well, but these are the main ones that have sought Jason and Cillia out already.