On November 23, 2007 we went to the eye doctor and during the exam, he saw something and told us that we should call his doctor and make arrangements to go to the hospital. We went to Children’s Hospital’s emergency room and had a cat scan completed. Hours later, the ER doctor came in the room with the scan and told us that there was a tumor in the back of Lenny’s brain. They needed to perform an MRI to get more information. The MRI was conclusive and Lenny was admitted to the Neuro ICU while they scheduled surgery for Monday.
That weekend was full of emotions and fear. Lenny was concerned about having a bad dream while under anesthesia and not being able to wake up. We were able to reassure him and he was okay. He would joke around with the doctors and the nurses and everyone who visited. He would tell everyone he was okay and later tell us, “How do they think I feel, I have a brain tumor”.
Surgery was successful and the surgeon told us that he got everything. We thanked God and thought the nightmare was over. But it wasn’t. The neuro- oncology staff came to visit and told us that they needed to wait for the pathology results to come in to determine the type of tumor and the treatment plan. The results indicated Medullablastoma. He was considered high risk and the team suggested the St. Jude’s clinical trial which required radiation and four rounds of high dose chemotherapy. However, before radiation started, Lenny would need to go back to the hospital for a few days to start to prepare for the stem cell extraction that would be used with the chemotherapy treatment.
On December 17, 2007, less than one month from surgery, he started 31 rounds of radiation. He finished radiation in January 2008 and started preparing for the required pre-tests. His first round of chemotherapy started in March and ended in July. Each hospital stay was approximately 15 days with 15 days rest in between. Before his third treatment, testing indicated that there was no evidence of disease. We were so happy and Lenny wondered why the other treatments were needed. The doctor told him that sometimes there could be a tiny cell that is undetectable and they need to complete the treatments. During the third treatment, Lenny needed a feeding tube (NG Tube) because he was losing too much weight and the doctor’s didn’t want any muscle loss.
On July 4, 2008, Lenny walked out of the hospital and was done with treatment. He was in maintenance mode and would require testing every three months. Lenny started physical therapy and was able to return to school in September. During treatments, he maintained his school work through HomeBound Study and completed sixth grade.
In January 2009, the MRI showed a slight spot and the doctor wanted to watch it closely. Another MRI was done in February, this one had no change. Another MRI done in March, showed increased growth. The recurrence was quick and the possibility of cure diminished. The plan now was continue chemotherapy and maintain quality of life, still with the hope for a cure. Lenny started experiencing some pain in his hips and knees and had trouble walking. It spread to those areas. Two more high dose chemotherapy treatments were completed; April and May. This helped, but did not cure. Bi-weekly chemotherapy would be done in the oncology clinic. Lenny had to go to physical therapy again and was able to go back to school in September. The bi-weekly chemo therapy drug was not stabilizing the growth, so a new option was started in October. After 5 days of the oral chemo drug, Lenny seemed to be getting better. Then another call from the doctor, Lenny’s liver count was high and this drug had to be stopped. We would start on a new drug in November. This one was an oral chemo pill taken for 5 days. Before we could start the next round in December, testing indicated his blood count was low and needed to be stabilized. He had the transfusion on Thursday and was feeling great on Friday. The next day Saturday, December 12th; he had trouble staying awake. We talked to the doctors and brought him to the hospital. Lenny did not wake up from the time we left the house. The cancer had spread and fluid filled his brain. Lenny earned his wings on December 17, 2009.
Lenny is a true inspiration. His strength and courage show us how to handle life’s disappointments. Lenny always smiled and never complained. He never focused on his cancer and never felt sorry for himself. |
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