Shane’s Future Days is a 501(c)(3) non-profit foundation whose mission is to raise awareness, research funds and assist families currently battling alveolar rhabdomyosarcoma and other rare childhood cancers. EIN: 47-2556395 .
Paul and I weren’t the only ones affected by Shane’s diagnosis. Chase (6) and Ella (3) have had their lives changed forever and they don’t even know or understand it completely yet. When we found out I was pregnant, Chase knew it was a boy and affectionately called him “razor mouth” after a shark. Hence, the nursery is beach themed. Unfortunately, that nickname got replaced by “Shane the brain” via Ella and “Jar Jar” from our Star Wars obsessed Chase.
All I ever wanted was a family where my children loved and cheered each other on, no matter what life threw at them. So far, so good.
Every Wednesday is chemo day for us now. Today, Shane had his first outpatient treatment. We were there from 9:30 till noon, which is great time for CHOP. Poppy took us down and stayed with us. His counts were decent. His neutrophils are low, meaning he is at risk for infection, but his bone marrow is making new RBCs, so no transfusions were needed. The doctor looked at the area and agreed it was more “smushy.” The area is the tumor and after 2 days from his last treatment, I noticed a difference . Before it was as hard as a rock and now it’s softer and smaller. I smile because the doctor said we would “notice a difference, but not in 2 days, more like 2 weeks.” Go, Shane!
His total treatment , which was only one drug, took 15 minutes . He sat in his car seat and chompted on his giraffe because frankly teething continues, regardless. I’ve said this to a few people lately, but I feel more comfortable at the hospital. Maybe it’s because this is no longer new or so many people are going through the same thing. Today, there were too many babies on the floor. One little girl looked to be about one and she was walking around and her and Shane had their own baby talk conversation. Another baby was no more than 4 months old and then there was the couple who looked like us a few weeks ago. My heart broke for them.
On July 11, 2013, our family became complete with the addition of a 8 lb. 8 oz. blue eyed little boy named Shane Joseph. He melts your heart with his long lashed eyes and constant toothy smile. Shane loves to be in the middle of activity with his brother Chase and sister Ella, but will never pass on an opportunity to cuddle.
Shane is the strongest and healthiest of our three children. He had never been sick, not even a fever. Now he’s an 8 month old baby fighting stage 4 cancer. How does this happen? There are things in life that will never be explained. We have no idea why we were chosen, but we were. So, we must move forward and fight for baby Shane.
We are starting this fundraiser to cover any out of pocket costs our insurance won’t cover, but more importantly to raise awareness about childhood cancer and bring a face to it. Any funds that are not used for Shane will go to CHOP’s sarcoma department, THON-Penn State University’s childhood cancer fundraiser, as my husband is an alumni and to help create a foundation to further rhabdo research and help families like ours. Below you can read the story of our emotional rollercoaster ride through the medical system. We will be updating in a blog form to let you know about Shane’s progress. Thank you for listening and thank you for your support.
Our journey begins in March and ends with a diagnosis by March 28th. The night of March 4th, my mother in law changed Shane’s diaper and discovered two swollen lumps. She immediately thought he could have a double hernia since my sister in law had this at 18 months of age. The next day I took Shane to the pediatrician and was told to make an appointment with general surgery within the week because he did in fact have a double inguinal hernia.
On Friday, March 7th, we headed to CHOP (The Children’s Hospital of Philadelphia) to meet with a general surgeon. After examining Shane, he told us he did not have a hernia, but was concerned that one of testicles had not dropped and wanted an ultrasound of the area. After the ultrasound, the surgeon told us they found enlarged lymph nodes and a mass. Immediately we thought “cancer” even though the word was never spoken. They got us an opening in urology so they could further investigate. Shane then had a complete blood work and another ultrasound of the abdomen to look for more enlarged lymph nodes and other organs. Both the blood work and ultrasound came back normal. The surgeon and urologist told us the mass wasn’t attached to anything and was probably a secondary site of infection. Shane was discharged with lymphadenopathy. It was written on his papers that he did not have testicular cancer. We were to come back in a week.
After one week, the urologist said the lymph nodes were the same size and he wanted us to go to infectious disease. They had more experience and knowledge about unexplained medical anomalies. Infectious disease decided to treat Shane for a bacterial infection and put him on a harsh antibiotic. Again, we had to return within a week to see if there was a difference. However, within one day of taking clindamycin, the left lymph node doubled in size and the mass had grown as well. We returned to CHOP two days later and after the examination we were referred to oncology.
When cancer was first put on the table, I remember pushing Shane’s stroller to the elevator and holding everything I had inside so that I wouldn’t topple over the handles and pass out. Hearing that we were meeting with oncology was painful. Having to wait 2 hours for our appointment was a punch in the gut.
Finally, it was our turn to sit with the doctor and put an end to this nightmare. Unfortunately, this was beginning. The doctor checked Shane and read all the notes from previous appointments. He looked at the ultrasound and x-rays. The words Neuroblastoma, lymphoma and leukemia were thrown around. Blood tests were ordered which would test for these cancers. A blood test tells all. A positive test and it’s cancer; a negative test and we were in the clear, so we thought. An MRI was scheduled for Tuesday which would paint us a picture of Shane’s abdomen. A biopsy to test inflamed lymph node was scheduled for Wednesday. We left the hospital on edge, but hopeful.
The weekend passed and Tuesday was here. We got to the hospital an hour early, ready to roll and put this behind us. While the MRI was in progress, I met with Urology to go over the surgery for the following day. What a relief. All of Shane’s blood work came back negative. We are in the clear. I guess the MRI is just a formality. Better to be safe than sorry, but the weight of the world was lifted from our shoulders.
At 4:00 the phone rang. The doctor from Oncology is on the line. We answered confidently knowing everything was fine. Until, the doctor spoke the word “the MRI confirmed what we thought. Your son has an extremely large tumor that goes from his pelvic region all the way to his rectum.” At this point, my heart dropped out of my chest and I fell to my knees. It was my worst nightmare. Going from thinking my son was clear of cancer, to he has a huge tumor that looks to be inoperable was the worst feeling in the world. It crippled me. It crippled my husband. Words can’t describe this feeling. This was the point when the surreal feeling, became real. White blood count is normal. Passed all of his blood test. Never had a fever. Never even a cold. And he dislikes sleep. He is the gerber baby. The biopsy is tomorrow. We’ll know for sure whether its the big C. We expected it, but we were still holding onto a shred of hope that the rapidly growing tumor was benign.
The biopsy was scheduled for 11:00. Around 11:45, Shane went into surgery. The urologist was going to remove the lymph node and send it off to pathology to get a true read. This will give us a proper diagnosis. Around 1:00, we were alerted that the surgery was complete. We were escorted into a small room for an update on the surgery. Surgery went well, but after looking at the cells through a microscope, the surgeon saw blue, signaling cancer. Can’t say my heart dropped this time, because deep down inside I just knew. The next step was the diagnosis and a treatment plan. In order to treat properly, a PET scan, a CAT scan, and CT scan were ordered. These tests would show where the cancer cells were, throughout the body. Once again, Shane had to be starved and sedated. Once again he was getting poked and prodded. All the while, with a huge smile on his face. It just breaks your heart. We were admitted overnight, so we could start the scans early in the morning.
Shane was prepped and ready. After 3 hours of scans, we were ready to go home. We met with the oncologist team prior to leaving. The scans revealed that the cancer had spread into his chest. There were flickering lights of cancer cells in his lungs and lymph nodes under his arms. Cancer was likely in the bone and bone marrow. The cancer was spreading rapidly through his little body. Believe it or not there is good news about rapidly growing cancers, not that good news and cancer go together. Rapidly growing cancers respond well to cancer treatments. The oncologist told us they narrowed down the cancer to about 4 or 5 potential cancers and all are treatable. We left the hospital in good spirits, ready to fight the big C. In the world of cancer, this was all you could hope for. Pathology report was to be ready around 4:00 on Friday. Game plan to follow.
Friday was a day of good spirit and hope. Our son has cancer, but its treatable. We are going to beat this. The phone rings at 4:00 and it’s oncology. All I could hear was “we were afraid it was this cancer. Your son has alveolar rhabdomyosarcoma. Once again my heart dropped, but this time it’s permanent. All I heard was sarcoma, one of the few cancers that doesn’t show signs in the bloodstream. Of all the cancers to be diagnosed with, this is the one you hope to avoid. The survival rate for an infant with this cancer is 1 in 10. Although this type of cancer responds well to treatment, in most cases it returns.
At this point, we’ve hit every stage of emotion, coming to the realization that this nightmare will never end till Shane beats this. We have to be strong for Shane and for his siblings. Life as we know has changed. This is our new normal. Instead of wallowing in sadness, we have to be positive. Somebody has to be the one. A 10% chance means there’s an outlier in every 10 cases. If anyone can beat this, it’s our little gerber baby. His blood work is still negative. Never an fever, never even a cold and he still dislikes sleep. But he is still smiling, even through all of this.
Last week we met with our cancer team and came up with a game plan for Shane. He had another surgery for a port placement to make blood draws and medicine administering easier for him. We were admitted so that he could begin his first of 42+ weeks of chemotherapy. There were some hiccups and the treatment started late, but as usual he slept through it and woke up smiling, talking and playing. We’ll be updating his progress on this blog over the next year. Pray for Baby Shane.