Kyler Updates

A journal of Kyler's fight against cancer

Wednesday, September 27, 2006

Second round of chemo




We had a good trip into San Francisco yesterday to UCSF. We met with a pediatric oncologist there and she had a chance to look at Kyler’s latest MRI and read the summary of his radiation treatment. She will also have the slides from his tumor looked at to double check the diagnosis. We should get a response from UCSF regarding his pathology diagnosis by the end of this week. Although UCSF has a doctor who specializes in CAM (complementary and alternative medical) therapies, they do not currently see pediatric patients. California law will not allow parents to decide between conventional and alternative medical approaches for children. We will have to pursue an integrative approach to Kyler’s treatment on our own.

Essentially, we received the same information from the doctor in San Francisco that we did during our meeting last Tuesday. But we wanted to get a second set of eyes on Kyler’s case and another opinion. I’m glad we did.

On the way home, Kyler ate a whole kids pizza at the California Pizza Kitchen. We were astounded. He hasn’t eaten that much in a very long time. Unfortunately, he threw up as we were picking up his brother up from a neighbors house.

His second round of chemo will start Thursday September 28th. Please pray for Kyler during this second round which will start about 2:00 PM. He will stay in the hospital for approximately 24 hours barring any unforeseen complications.

You all are pretty well versed by now in how to pray for Kyler during chemo. Many thanks again to the veterans who continue to fight on their knees for him.

Blessings,

Darrell

Saturday, September 23, 2006

An interesting week

Many of you have asked how Kyler’s most recent round of chemo went. It’s been a challenging week and we’re finally getting around to getting the word out about what’s going on.

Kyler did not go in for his second round of chemo Tuesday. A bit of background is in order to get everyone up to speed. Most of you know that since we found out about Kyler’s cancer that we have earnestly sought out ways to naturally help his body begin to do what it had not been doing, notably, destroying renegade cells before they got out of hand. We have not been excited about the prospects of radiation and chemotherapy knowing what would happen to Kyler’s body as a result.

Through a number of people God has brought into our lives we have been pursuing alternative methods to conventional medicine to fight this. There is a good deal of information about people who have been able to win this fight outside the borders of conventional medicine without the devastating side effects normally associated. We sincerely believe that God designed our bodies to be able to heal and repair itself if it would only be given the proper raw material to do so.

While there could be many reasons for someone to be diagnosed with cancer, most of them have to do with poor treatment of our bodies and environmental factors. To give Kyler the best chances possible, we have done our best to eliminate as many of the environmental factors as possible and drastically change our lifestyle as well as add significant amounts of nutritional supplements to give his body what it needs to fight this cancer.

We have gone to see a licensed naturopathic doctor who has helped us in shaping his daily routine to get what he needs to remain healthy and protect his body during chemotherapy as much as possible. She did her internship at one of the Cancer Treatment Center of America in Seattle. She affirmed what we had already been doing and fine-tuned a few things for make sure Kyler was getting everything he needed.

In addition to the unfavorable side effects of chemotherapy, we are discovering how ineffective it seems to have been in other medullablastoma cases and can possibly cause secondary cancers in the future. Many children don’t make it through the chemo treatments and succumb to infections or organ failure. Overall, 40% of cancer patients die of malnutrition. It’s not hard to understand when you see what happens to people during chemotherapy.

Knowing that 100% of Kyler’s tumor was removed, that it had not metastasized, that we’ve had two clean MRI’s and spinal taps, we thought we would begin a season of ‘watchful waiting’ during which we would aggressively continue Kyler’s CAM (Complimentary and Alternative Medical) therapies and receive regular screenings.

When we suggested this change in course of treatment to our doctor, she immediately said that if we pursued this she would have no alternative but to file a report with Child Protection Services and let the courts decide. She shared with us that in her 20 years of experience and from all the information she has that Kyler would have no chance for survival if we were to stop chemotherapy at this point. Apparently the dosage of radiation Kyler received is not sufficient on it’s own to kill any remaining cancer cells. They tried a clinical trial a number of years ago with standard risk medullablastoma kids (these kids had a better chance than Kyler does) where they received the same radiation dosage Kyler did and did not do chemotherapy. All of them relapsed and died and they discontinued the trial half way through.

Even though we firmly believe that the CAM therapies we are doing with Kyler would be successful in beating this, as many adults already have, because of existing laws we do not have the option for going this route.

Some of you may be aware of Abraham Cherrix situation and wonder how he could get approval to go with CAM therapies. A parent only has the option of resorting to CAM therapies if conventional treatment has been followed and there is a relapse giving the patient a much less favorable prognosis. He was also past the age of reason and could comprehend the issues involved and think for himself in this area.

In essence, a parent only has a choice to try and treat something with their child using methods outside conventional medicine when those conventional methods have failed and the child is in much worse condition than before. The medical community can then say, “Well, the best we could do didn’t work. You can try whatever you want.”

So, we do not have a choice in the matter since we do not have the strength to try and fight this in courts, have our kids taken away and Kyler forced into treatment. Our best option now is an integrative approach to treatment using both conventional and CAM therapies.

We go to San Francisco Tuesday for a second opinion on diagnosis and treatment options. If they are the same as what was found at Sutter Memorial, we will continue with chemo shortly.

It may be hard for some of you to understand our rationale and why we would even consider venturing outside conventional medicine. We have just read too much information like this http://ouralexander.org/chemo.htm that makes us uncomfortable with current practices.

The war on cancer is not being won.

What we do know is that we are not out of God’s reach and that we are trying to be obedient in doing what is best for Kyler.

Please continue to pray for Kyler and our family.

Here’s a picture of Kyler with our new kitty, Nozomi, which means ‘hope’ in Japanese. We believe God is our hope and he will be a good reminder.

Tuesday, September 12, 2006

Preparation

Sorry it has been a while since my last post. Kyler was cleared last Tuesday Sep. 5th to go back to school as his blood counts had risen to a safe level. At his appointment today he has improved even more. You can definitely tell the difference when his immune system is stronger. He is much more energetic, his attitude it better, he is not as lethargic, and seems to enjoy life more.

This last weekend we spontaneously decided to go to Redding since Kyler seemed to be doing well and the family had decided to celebrate the birthday for Sandie’s dad, a nephew, and an uncle.

Saturday was one of the best days we’ve had in a long time. We took two of the boys cousins with us to Turtle Bay and spent the day there. They had a blast. Kyler didn’t complain about being too hot or tired and enjoyed being with the gang. That evening we came back with Sandie’s parents to see the Sundial Bridge at night.




Walt, who is improving and walking on his own, was able to cross the bridge with the help of a hiking stick. It looks like a ski pole with a rubber foot on the bottom. He is doing well.

We are working hard on strengthening Kyler in preparation for his next chemo treatment one week from today (Sept. 19th). We will definitely be needing your prayers at that time. Please pray that Kyler’s ears are protected. The drug they are using typically causes mild to severe hearing loss over time. He had a hearing test last week to establish a baseline from which to measure future changes. Pray for guidance and wisdom for Sandie and I and that we would be clear in our hearing and quick to respond. Also keep praying for Sandie and I for peace and protection against anxiety and physical effects of stress.

We deeply appreciate your continued prayers. We were able to meet several people at Risen King Community Church in Redding whom we had never met before but daily pray for us. Thank you for your faithfulness and persistence.

Blessings,

Darrell

Friday, September 01, 2006

Home Again

They released Kyler today after his white blood cell count rose slightly. We are home now and Kyler seems very energetic after getting a bunch of red blood cells and feeling the relief of being able to move about freely in a familiar environment.

He is still neutropenic and will not be able to go back to school till Wednesday at the earliest and only if his ANC count is above 500. Today his ANC count was 200. We must avoid crowded areas like the mall or church and keep him away from anyone who might be ill.

I must admit this was a bit of a scare. Having Kyler in the hospital for four days waiting each day to see what his blood counts were and closely monitoring his temprature was not much fun. The threat of infection in his condition is serious.

Thankfully, the upward trend in his white blood cell count was enough to release him, but with instructions to be very careful during this period.

What is peculiar is the fact that last week was supposed to be his low point as far as the strength of his immunity system goes. The doctors feel that since he has already had six weeks of radiation that this made the chemo work longer and more effectively.

Please pray for white blood cells for Kyler and a strong recovery before his next chemo treatment which is scheduled for Sep. 19th. However, they will wait till his ANC is above 1000 before moving forward with that.

The day after I posted the last blog, Sandie began to feel much better. Your prayers are effective. Thank you.

On a lighter note, we have some pictures to share from a local photographer who graciously donated her services to take pictures of our family as an offering of encouragement and support. She was the photographer for Kyler’s pre-school last year and remembered Kyler. Please enjoy. We had a wonderful time with her as she took pictures of our family doing some of the things we enjoy.

You can check out her blog for a complete slideshow of our family set to music.

Thanks, Debbie! www.debbiebrownphoto.blogspot.com








Blessings,


Darrell