So many wonderful memories...
family and friends coming together to celebrate the life of our little one
faithful prayers and encouragement
God's sovereignty
those who helped make our burden lighter
grandparents
a lisp
a videographer to capture the moment so we won't forget
facing the challenge of blowing candles (a task that surgery temporarily took away) a new smile
devoted parents
best friends
the excitement of celebrating a fourth birthday
cousins
sisters
brothers
aunts
uncles
5.04.2009
2.01.2009
Camping
We decided to get away and do some camping. Was I crazy? On August 17th, we packed up the Motorhome with supplies to change Madi's central line dressing and end caps. We also had shots in the refigerator that she needed each day to build up her white blood cells. This was fun for her, but stressful for all of the adults. It was an enjoyable two days. She played and rode her bike. We stayed far away from any swimming pools, since she couldn't get her line wet. We arrived back home late August 18th and woke up early the next morning to go in for a doctors appointment. The doctor wasn't overly excited that we went camping and she rode her bike, but he knew we wanted her to be a kid and have fun no matter what was happening inside her body. God is in control.
10.04.2008
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. 
9.15.2008
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.
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.
8.13.2008
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.
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.
7.01.2008
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.
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.
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