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The content from 2003 to 2010 has been transferred over from our previous web host. So, on occasion, reference will be made to menus and such that no longer exist. The journal entries were priority and the rest wasn't able to be moved. So, enjoy our story. God is still moving and working in our lives.

Wed. 4/30/03 - Recovery

Wednesday 4/30/03
1:00am Wednesday morning Les woke up. He was back to his normal self mentally. He asked clear, though tough questions. He asked “why am I in this position?” Cillia clarified with him if he wanted to know about his physical position on the bed or the position of being in the hospital with and “owie” on his head. Of course, Les wanted to know the answer to the latter.

Cillia reminded him of the tumor and the reason it need to come out. She expressed her sympathy and tried to offer as much comfort as possible. He was calm and seemed to accept the answer. He then asked why he was in the position he was on the bed. That made Cillia smile and confirm that there was nothing wrong with his mind.

Les’ neck is sore. He doesn’t want to move it at all, which is understandable. They will start to give him some pain medication today so that we can start to move around better. They didn’t want to give him pain medication until now because it would have impaired his neurological responses, which were critical for them to be able to assess early on.

The Speech Therapist and Occupational Therapists were back this morning. Les did a great job at chewing and swallowing, however he wasn’t moving his head at all, so they held off on the food for today. They want to make sure he has control over his neck muscles. He was bummed.

The nurse got conflicting instructions from the therapists and a surgeon, so she allowed a few licks of a Popsicle after taking Tylenol with Codeine orally. Another surgeon saw it and made them strictly stick to the therapists’ recommendations. It has been the only time in their hospital experience that there was a conflict and they consider it to be rather minor in the grand scheme of things. Later, pain medication was given through the IV.

Les received a sponge bath today. He wasn’t thrilled to be moving around, but mommy and daddy encouraged him to move so that his neck muscles would strengthen and he would be able to eat tomorrow.

Later in the evening, Grandma Sue, Grandpa Martin and Jason Bendikson were with Les when the nurse brought in a wagon. She promptly informed Les that he was going for a ride. He was a little hesitant at first and was cautious about being transferred from the bed. Grandpa Martin picked him right up and the nurse helped him get settled in the wagon. They all went for a walk around the ward and Les thought it was pretty cool. Jason and Cillia had been out for a dinner and email break, so when Cillia came back to the room she was surprised to see the empty bed. Her surprise turned to excitement when they came rolling around the corner. Les wanted to show mommy some kites he had found and so they went for another walk. Daddy missed this experience, because he was outside making yet another phone call.

Les has smiled today and his eyes are showing a little more of the brightness that he’s known for.

Cillia and Jason were able to download the multitudes of emails from family and friends and they appreciate all the well wishes, prayers, offers for support and messages.

Thank-you!!!

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.

Mon. 4/28/03 - Operation

Monday 4/28/03
Monday morning Les was still sleeping when they came to transfer him to the Operating Room. It went rather smoothly. Grandma Sue arrived to walk down the hall with them to the Warren Surgical Suites at Children’s Hospital. They waited for about 25 minutes in the waiting area and had a chance to talk to the surgeon prior to surgery. He was very professional and arrived in a suit. It was only after the surgery that they saw him in his scrubs.

Cillia and Jason each had their own way of passing the 4-5 hours during the surgery. Jason chose to stay close and wait in the waiting room. Judy Kentish, the assistant pastor at church and a family friend, was with him the entire time and offered a much-needed sounding board as Jason expressed his thoughts. Later, Jason’s mom (Gammie) and another friend, Tammy Wedberg came. Cillia’s cousin walked over during her lunch hour to check on the status. She works across the street from the hospital. Cillia chose to leave and go to Grandma’s house. After a shower, she sat at the computer and did the practical things of life, like pay bills. Jason called periodically with updates and Cillia arrived back at the hospital shortly before the surgeon came out to talk to them.

Dr. Meltzer informed Jason and Cillia that the surgery went exceptionally well. Les performed wonderfully under the anesthesia and there were no complications at all. He was confident that the entire tumor was removed. Another MRI was scheduled the next day to check the brain and make sure the entire tumor was removed.

Les was moved back to the ICU for recovery. Jason and Cillia were able to be with him when he woke up. The doctors and nurses were impressed with how quickly Les recovered from the surgery. He didn’t jump out of bed and run around or anything, but he was able to talk in complete sentences and respond to commands from the doctors and nurses. Les slept the rest of the day and most of the next.

Jason and Cillia took the opportunity to go back to Grandma’s house Monday night. They left Grandma Sue at the hospital to be with Les.

Sun. 4/27/03 - PreOp

Sunday 4/27/03
Cillia helped Les eat a good breakfast. A little while later Grandma brought Jason back to the hospital and then stayed with Les while Jason and Cillia went out to breakfast. Gammie and Papa Barry arrived while Cillia and Jason were out, so Les had many familiar faces around him.

Cillia and Jason returned with crayons and a Buzz Lightyear activity book, which provided a much needed distraction for Les. He was exhausted still and soon took a 3-hour nap. While napping we had several other visitors. The Frink’s came by with their daughter who had undergone a brain surgery with the same surgeon that Les would have. They were a great encouragement. Rod Whiting came to visit also. He is the worship leader in Sunday School and Les has grown fond of him. Jason and Cillia regret that they did not take Rod back to see Les while he was sleeping. That group of visitors, as well as the grandparents left in the afternoon while Les was still sleeping. Jason and Cillia had a brief time of being alone in the room with Les before the next group of visitors showed up.

It should be noted that God has the Fountain’s social calendar well under control. There was very little communication between them and the outside world, but it seemed that the perfect people showed up at the perfect time.

Chris, Kelsey, Elizabeth and Nathaniel Lick showed up minutes before Les woke from his nap. They are very close family friends. When Les saw Elizabeth, he immediately wanted to show her his “cool bed with a remote control”. The Lick’s visited until after dinner and the entire time Les and Elizabeth were both on the bed playing. It was a wonderful distraction. A little later, Cillia’s cousin Debbie and her husband came by. They live only minutes away from the hospital and are another source of support. Great-Grandma also came by that evening. A surprise visitor Sunday evening was Ellen McConnell. She was the nurse in the ER and wanted to follow up with us. She brought wonderful gifts and much love.

Sunday afternoon, the neurosurgeon came by with results from the MRI scan the day before. There does seem to be a cluster of small spots midway down Les’ spinal column. These spots are inoperable.

Up until Sunday night Les didn’t know about the scheduled surgery. Knowing that he would fret about it, Jason and Cillia chose to wait until the last minute to tell him. They had already informed him that the CaT scan had shown that there was a tumor in his head and that was why he needed to stay in the hospital. Cillia came up with a word picture to be able to simply explain what a tumor was and why it needed to come out. She and Jason shared this with Les on Sunday evening before bedtime. Her analogy was that a tumor is like a weed in a garden (Les has helped plant our family garden at home and is also studying botany at preschool). Cillia explained that a weed is not nice and doesn’t share the nutrients that are in the soil. In order for the good plants to grow, the weed needs to come out. Cillia had drawn a simple picture with crayons and Les helped her draw the roots for each plant. Cillia then drew a small weed plant showing the roots of it overlapping some of the roots of the good plants. They then drew a circle around the weed and crossed it out. His little mind is sharp and he grasped the concept quickly. He was not thrilled when they informed him that he would have and “owie” on the back of his head.

Both Cillia and Jason stayed in the room with Les on Sunday night. Les was awake much of the night and Cillia climbed into bed with him. He voiced his concern about the “owie” and Cillia tried to comfort as much as possible. He eventually fell asleep curled up next to her.

Sat. 4/26/03 - ER

Saturday 4/26/03
8:45pm Friday (4/25) they checked into the ER. At 11:45pm they were shown to an examining room and by 12:30am (4/26) the doctors were expressing the need for an image of Les’ brain. A “CaT”Scan was performed at 3am and Les was so tired they didn’t need anesthesia for him to hold still. By 4:00am the doctor had informed them that a tumor had shown up on the scan, and that they would be admitted to the hospital with plans of a surgery soon. Les finally fell asleep shortly after 4:00am. He had only 2 hours of sleep in the previous 21 hours.

By 5:30am Les was moved to an ICU (intensive care unit) room. After a brief consultation with the neurosurgeon, an MRI scan was done at 10:15am. They were checking his head and spinal column to see if there was any spreading of the tumor through the spinal fluid. Les had anesthesia for the MRI scan and did well. Grandma Sue had arrived shortly before the MRI and she was able to stay near Les while Cillia and Jason returned to the Children’s area for a meeting with Dr. Meltzer, the neurosurgeon. We discussed the CaT scan and the probable course of treatment, depending on the results of the MRI scan. A surgery was scheduled for 7:30am on Monday morning (4/28/03).

Les’ vital signs were so stable that he was moved from the ICU to the IMU (intermediate care) on Saturday afternoon (4/26). Dave and Christopher Kentish had shown up to visit about this time, so Cillia was able to go to her Grandma’s during the afternoon to get a shower and short nap while Jason remained with Les. Jason later went to Grandma’s for the night while Cillia stayed in Les’ room with him. Children’s Hospital believes strongly in parent involvement and tries to make them as comfortable as possible. Les did rather well with the constant interruptions throughout the night. Cillia did OK too.

Fri. 4/25/03 - Bubbles

Friday 4/25/03
Getaway weekend for Jason and Cecillia while Les was scheduled to stay with Gammie and Papa Barry.

Cillia called from Gammie’s house in Wildomar to Paramedic Todd and Murrieta Station 2 and discussed whether or not to call 911. Todd felt that it was worthy of a 911 response.

Cillia called Jason who had just arrived home to say that she was going to bring Les home in Murrieta and then call 911, hoping that the Fire Department could push Les to the front of the line at a hospital emergency room. As Jason and Cillia talked, Jason stood in the garage. Just as Jason was going to tell Cillia to wait to call 911, the Murrieta Fire District Engine 631 (station 1) pulled to a stop in front of our house. Two firemen and a Paramedic jumped from the vehicle and approached Jason. Forrest, the Engineer, said to Jason, “You don’t look so hurt.”

Jason explained that he wasn’t, that Les was our concern. Forrest indicated that Todd had called from Station 2 saying, “Barry’s son is having some displasia and weakness on one side and that they should expect a 911 call.” Since Forrest knew me and where we lived, he piled his crew into the Engine and drove to the house Code 3. Forrest asked Jason if we needed an ambulance at the house and Jason confirmed there was no need for an ambulance. Forrest asked “Red” the Paramedic to call and cancel the ambulance.

Cillia brought Les home from Gammie’s house and we let Red administer some field tests on Les’ neurological responses. It was recommended that we take him directly to Children’s Hospital Emergency Room in San Diego, because the local hospitals would not be equipped to handle such a young child as well as Children’s would.

Jason and Cillia made the decision to go to Children’s. They went inside and packed a suitcase expecting that they would be staying the night at the hospital ER and/or Grandma’s house in San Diego. They were scheduled to host a church home group that night, so they prepared the house and left a note on the door for everyone to come in and make themselves at home. Cillia’s dad attended the group and showed up first, so they left him in charge after they informed him of their plans.

It was dinnertime and they hadn’t eaten yet, so off to Subway to grab a quick sandwich. While at Subway, they ran into friends from church and asked them to pray for them because they were going to the ER.

The drive to the ER was uneventful. A few calls were made to inform Grandma that they may show up in the middle of the night and want to sleep in her spare bed.


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