Second Cycle of Chemotherapy

Madi had an appointment to check her blood levels. Everything looked great so she was scheduled to begin cycle two on August 9th. Instead of admitting her in the hospital and wait until the night to begin the chemotherapy, we decided to have some fun. We thought we were headed to the beach, but found ourselves at Universal Studios. We bought a day pass and got the rest of the year free. What an investment. This was where we went before every chemotherapy treatment. Madi enjoyed her time here before having to go into the hospital for a while. Papa spent time with us here as he was the one to bring us to LA before each treatment. Once we were tired, we would hesitantly admit Madi into the hospital. The treatment went fine. This was the first time she was given Methotrexate over a period of 24 hours. Her body was filled with toxins that she couldn't get out of the hospital until she was at a level that was not life-threatening. She was discharged on August 14th still feeling O.K. and looking forward to quickly getting to the next cycle.

First Chemotherapy Treatment

On July 25th, Madi went to her dance class. Her Nana owns a Christian Dance Studio and her Aunt is her teacher. I wanted her to be able to see everyone before her immune system dropped due to the Chemotherapy. The next morning she had surgery for her reservoir and the following day began her chemotherapy. She was given a few different drugs along with the Methotrexate which was injected into her head through the reservoir. She didn't like the shot into her head at all. The chemotherapy ran through the I.V. over a 24 hour period. She had her labs drawn to check her blood levels. Everything seemed to be going smoothly until she got a fever.
This was the beginning of many fevers to come. When the chemotherapy kills cells, it takes time to regenerate new blood cells. When the blood count drops, infections can come in and take over because there are no white blood cells to fight the infection. Madi had to stay in the hospital for 11 days. For 11 days we had the challenge of trying to find something to eat. She still struggled to find something that tasted good. She settled for peanut butter, chocolate milk and french fries. She had the privilage of learning how to play video games and watch movies. She had an entire suitcase filled with crafts and games. We were all so excited to go home on the sixth of August.

Treatment decision

After much prayer, we decided on a treatment plan that came from Germany. This seemed to be the most effective treatment outside of the standard treatment. Choosing treatment for Madi was a very difficult decision because the side effects are lifelong. Here is a link to the New England Journal of Medicine article.
http://content.nejm.org/cgi/reprint/352/10/978.pdf
The very first part of the article states, "The prognosis for young children with medulloblastoma is poor, and survivors are at high risk for cognitive deficits."
Madi's tumor had not metastasized therefore the benefits of this chemotherapy treatment looked promising especially in 3 year old children. On July 26th, the surgeon placed a reservoir in Madi's head that would be a direct insert for Methotrexate to be injected right into her brain and spinal fluid. On July 27th, Madi began her first treatment of this protocol.

Consultation with Radiation Oncology

July 19th, 2005 we had a consultation with the Radiation Oncologist
Her diagnosis: MRI shows some enhancement in spinal cord which they believe is surgery residue. Spinal Fluid has no cancer. Bone Marrow has no cancer. Assuming the MRI is clear, she is standard risk medulloblastoma in the cerebellum.
The doctor recommend: Standard treatment which includes chemotherapy and radiation to the entire brain and spinal cord. The surgery removed most of the tumor which put her in the category of standard risk.
These are my notes from our meeting
Why do radiation? Unwanted side effects. Tumor can spread to other parts of her brain.
Using a high-dose chemotherapy along with the radiation looks positive. 80% cure rate. She would be sedated everyday for 6 weeks of treatment. The plan is to radiate the target area with radiation of 2,240 for two and a half weeks followed by three and a half weeks of radiation to the entire brain and spine. This is a 5 minute treatment, but because of the sedation, it will take two hours.
Side Effects: Short-term- tired, headaches, vomiting, need steroids, skin redness, dryness, decrease bone marrow (may need transfusions). Long-term- Permanent hair loss on target area (the back of her head), developmental problems (it will happen, she might need special care all of her life. Memory and learning will be affected and will need special education. Growth problems- shortening of the spine. Affect hormonal production. Could cause second cancers.
Survival Rates: 5% survival for radiation on tumor only.
15% survival for radiation to tumor and spine. 50% survival for entire brain and spine.
After this meeting, we had a very quiet drive home. Making a decision like this for a 3 year old was difficult. All we could do was pray for wisdom and trust God for his guidance. We agreed that this would not be the best option for her at this time.

The Central Line

July 15th, the doctors put in a double lumen hickman catheter to Madi's chest. This tube went directly into her blood stream. For Madi, this meant NO MORE POKES! Each morning she would wake up around 4:30 am. to a voice that said, "LABORATORY". Within minutes she would be getting blood draws. Many times her veins would collapse. She was poked often. The central line was a happy thing (at the time). For mom, this was an overwhelming time. I was given a training on how to care for this line and sent home with a big bag full of supplies which would last for a month. The lumens needed to be cleaned and changed regularly. The dressing needed to be changed and everything had to be completely sterile. I was trained to peel off the tagaderm (which hurt Madi, clean the area with chloroprep, put a new tagaderm on and flush the lines with saline and heparin. This process took a long time and Madi would cry almost the entire time. Her skin was soft and would peel off. The chloroprep was part alcohol which would burn and sting. We had to do this every 5 days. After a few times of changing the dressing, this was second nature for me. For Madi, this was a part of her. She couldn't get wet, so she could no longer take normal baths or swim. She handled the adjustment very well.

Recovery

Madi stayed in the hospital for 14 days. She was in the ICU for 10 days. Every day was rough. As her mommy, I wanted what she wanted. She hated all of the tubes in her nose and throat. She hated the catheter. She hated the crib bed. Each day we made strides to get better. She had a post op MRI which showed cancer in the spinal cord and fluid. She couldn't keep anything down. She was vomitting constantly. Once they moved her out of the ICU, she became incoherent because she threw up her steroid which was helping to reduce the swelling. My husband had to chase down the doctors because she was doing so badly. They moved her into the ICU again. We had many restless nights. Sleeping in an upright chair while pregnant is not comfortable. The nuerosurgeon took off her bandages, cleaned her dressing and found that she was getting a bed sore. It was at this point that I took on a nurse roll. We had to get out of the hospital. If she could keep anything down, we were free to go. We tried every anti-nausea medicine and finally found Zofran. A few hours later, Madi asked for a donut and did't throw it up! On July 16th, we got to go home.

Saturday, July 2, 2005- Madi's diagnosis and first 24 hours.

After weeks of her throwing up and waiting for the doctors, I took Madi in again to the doctor. With Daddy in Virginia at a teaching conference and me being 9 weeks pregnant, I couldn't take it anymore. I asked my parents for their advice and they said I should take her in to the doctor. Within an hour we had a 1:30 appointment. My dad drove us. I dropped Hunter off with my brother-in-law and sister at church as they were leaving from VBS. We saw the doctor. She did the same neurological tests that were done on the 23rd of June. At this point, Madi had lost 6pounds in a week. Her neurological tests were perfect, her eyes looked perfect. The doctor ordered a CAT scan just to rule out the worst case senario. I couldn't go in with Madi because I was pregnant, so my dad went in with her. He said she lay perfectly still for 20 minutes. They injected contrast into her bloodstream through the IV they put in after two tries. The Radiologist was called into the CAT Scan room and my dad could tell something was not right. The CAT scan showed a large tumor in her brain. I couldn't believe my 3 year old daughter had a tumor. The doctor called the paramedics and we were on our way to LA. I needed to call daddy, but the hotel phone number was at our house. My dad and I made some very difficult phone calls telling family and friends the horrible news. We tried holding back the tears, but we couldn't. The parametics arrived and took us to LA. My dad went back home to pick up my mom and go by our house to get the phone number to call daddy. I remember following the steps of the paramedic. I was lost. I didn't know where we were, I couldn't get a hold of my husband, my father and mother-in-law, my best friends or my sister. I didn't understand what the doctors were saying. I was in the Pediatric Intensive Care Unit meeting the Doctors that would treat her. The Neurosurgeon talked with me about the CAT scan. He showed me where the tumor was and how the rest of her brain was affected by this. The surgeon told me that it was cancer and she had a 50% survival rate. He said her vomitting was related to the increased pressure of CSF on the brain. If he felt it necessary, he would put a drain in her brain to release the pressure. He scheduled surgery to remove the tumor for Tuesday, so we were left to wait. My parents came with their friends Orville and Nancy. My mom decided to stay the night with us. My brother-in-law also came. we talked about the unexpected, waiting until Tuesday, hoping my husband would arrive soon and prayed. My mom slept in the waiting room while I tried to sleep in a chair in the ICU. Madi threw up every 45 minutes all night long. At 5:00 am., I asked Nurse Rose if I could hold Madi. Her vital signs were slipping. Her heart rate was 30-40 bpm. She was pale, almost transluscent. My mom came in at 6:00. Madi was pulling our handfuls of hair, stretching our and breathing very slowly. My mom was very concerned. I felt like I was losing my little girl. I was holding a lifeless body. I asked if she would sing with me. I sang two songs with her. She would take a deep breath and with all her might, let out a faint "la" as I sang Jesus Loves Me. After we sang the songs, I asked a nurse if I was just suppose to hold her and watch her die. Once they noticed how bad she was doing, they immediately took her limp body from my arms and told me she was in a coma. The neurosurgeon came right then and did an emergency stent procedure to release the pressure. Right there, in the ICU bed, they performed surgery on Madi with no anesthesia because there was not enough time to take her to the OR. Once the procedure was over, the pressure was released and she was back. During the procedure, my friends Deb and Karlee, and my brother-in-law, Andy, came. I tried to call my husband, but he was already on the plane. The doctor told me that he would be taking Madi in for her surgery because we couldn't wait until Tuesday. She regained consciousness and I was able to see her. Her blond hair was now gone. We spent time crying and praying with Madi. All we could do was pray. It was Sunday morning, our church hung onto every update and at this time hundreds of people were praying. My mom and I walked Madi down to the operating room and left her for surgery, major brain surgery. We were unsure of the outcome. By this time, Grandpa, Grandma, Hunter, Jason, Paul, Dawn, Nate, Karissa, Caleb, Roger, and the Alexandru family filled with waiting room. I have never felt so helpless for so many long hours. During the surgery, my husband was able to call during his lay over. We told him about the emergency surgery and was devastated. Surgery went well. The surgeon told us he removed as much as he could and she would now need to follow up with cancer treatments. After the surgery, I saw Madi, she looked confused. She was in pain and scared. Her recovery from the surgery began. God had his hand in every little detail. He was one step ahead. With Daddy gone, I was only focused on her. He had allowed us to be in the ICU at the right time. With God, there are no accidents.