The Boy With Cancer Who Ran Away

Great blog post from Tony Jones about the boy the Hodgkin's who refused treatment for "religious reasons." I promise, Melissa nor I have any "religious reasons" for stopping her treatment :)

The original post can be found at:

http://blog.beliefnet.com/tonyjones/2009/05/breaking-news-boy-with-cancer.html

"Breaking News! Boy With Cancer Gets Chemo"

by Tony Jones

Probably the biggest religion story of the past couple weeks has been the saga of Daniel Hauser, the 13-year-old boy from northern Minnesota who is dying of Hodgkin's Lymphoma. Yes, he's dying, unless he gets chemo. With chemo, there's a 90% survival rate. Without chemo, less than 10%.

After one round of chemo this Spring, Hauser refused to go back. At some point he and his mother -- and possibly other members of his family -- "converted" to Nemenhah, an online Native American "religion" that advotes homeopathic recipes of roots and herbs to treat illness. Daniel claimed to be a Nemenhah shaman, then it turned out that Nemenhahites (?) age 13 or older are automatically shamans. The Hausers are in no sense Indian.

When Daniel refused chemo, his doctor took him to court. Daniel defended himself with a first-person statement that I'm highly doubtful that he wrote himself. When the judge ordered Daniel to resume chemo, he and his mother fled to California, seduced by a sleazy lawyer to promptly ditched them. They were then flown back by a Hollywood movie producer, and yesterday, Daniel showed up for chemo at a hospital in Minneapolis.

Lots of people have been writing about this as a freedom of religion case, and it may be.

My friend, Carla, has written about the parental privacy aspects of the situation:

Because raising children is not something we do for ourselves. We raise children to be part of the world, to be active, involved participants in the lives of other people. Daniel Hauser doesn't belong to his mother. He belongs to a family, to a community, to God.

Carla's on to something here. It seems to me that this is a case of a naive and easily manipulated mom, and a bedraggled father, who dragged their son into a hellish public nightmare because of their conspiracy-theory mistrust of Western medicine.

This is why we live in a society, surrounded by other human beings, so that when one of us loses our way, there's a whole posse of people around to ensure that we don't take others down with us. Thank GOD for a sensible physician and judge for overriding in unsensible parent.

Chemo Round 2

So yesterday was round two of chemo and while it went faster than round one, it still took forever. We got there on time and had to wait about 20 min. before we went back for chemo. We met the third nurse Russ, who was also fantastic, he hooked me through my port, took my blood and waited to make sure my counts were okay, which they were:)

Then they started me on all of my premeds. In the midst of this is was time for my scheduled appointment with the doctor, this is something you do every other treatment, just to check in. So they took me, and my IV's and Rob to a room and we waited. And waited. And waited. we waited so long my premed bag ran out, but there was still no doctor. then there was a knock at the door. It was Russ, checking on us. He took the premed bag off an said, you haven't seen the doctor yet? We said nope. unfortunately the way my meds go they couldn't give me anything else until we were back in the chemo chairs, so that put everything later.

An hour later, not in the comfy chair, we finally saw the doctor. He said I was boring because I had no symptoms. Russ even commented on the fact that I hadn't lost my hair yet. I am not believing that it won't got yet, but you never know. After that we went back to finish chemo for the day. Which means lots of sitting and waiting.

While we sat and waited I read my kindle some more. And at least 4 people asked me about it, including two nurses. Perhaps I am starting something, or as my sister said, corrupting the chemo group. Who knows.

Of course what you all want to read is how I am feeling. I am feeling great again so far. I came home an relaxed and rested yesterday and went to work like normal today. We are ever grateful this week for all who helped us out. Carrie for watching Colby, beyond the time we thought. Susan Smith and Sue Demaine for the delicious meals that helped to make chemo week easier. And for all those who have sent cards, and presents to help make this whole journey that much easier. We appreciate you all.

I will keep you posted and how I feel and what happens next. Maybe even some hair falling out:)

Melissa and Celebrities

So, it has officially been a week since my first chemo treatment and since there is nothing new to share, I am going to write about my recent findings this week of celebrities who have or had Hodgkins Lymphoma. Before I do this, just a quick update. I am doing fine, am blessed to have no side effects so far. We will see how next week goes:)

Now on to the good stuff. So I was surfing the internet yesterday and came across the following story: http://www.people.com/people/article/0,,20279566,00.html

If you know me well, you know that I am a huge fan of Survivor. According to this story, one of the past winners of Survivor: Africa, has been diagnosed with Hodgkins Lymphoma as well. In reading the article I realized that he started treatment the same week as I did, so I thought it was a funny coincidence to share with y'all.

Then, last night I was at the pre-conference briefing and one of my pastor friends walked up to me and said, hey did you see that Ethan from Survivor has the same thing you do. And I was like, yeah I read that today. And then he was like, well when I first heard about your diagnosis I immediately remembered that Matthew Fox, from Party of Five and now Lost, had Hodgkins Lymphoma while he was on Party of Five and look at him now. 

This of course prompted a conversation of whether or not this pastor had decided to google celebrities with Hodgkins Lymphoma. He denies it, but I am not sure. I thought this was something fun and interesting to share with everyone. Hope you enjoy it!!!

And I promise we are working on the head wrap voting survey:)

Colby Swim

IMG_1099.JPG
Originally uploaded by robrynders

Colby had his first swimming experience today when his aunt Katie and Uncle Robbie took him to the pool! Melissa will post more later, but here is a cute picture for now.

1st Chemo Treatment

As many of you know from reading the blog, my first official chemo treatment was yesterday, Tuesday May 12th. We went in not really knowing what to expect, but knowing that we would be there for a while. I came armed with my blanket from the LoveKnots at Tempe 1st, my kindle that the family pitched in on for my Mother's Day present, my comfy sweats my sisters got me at Disneyland, and my mom and Rob.

When it was my turn they took me back into the area where they do all the chemo treatment and we met the nurses Jackie and Charlotte, both very nice and very reassuring that no question was a stupid question. We sat down in an open reclining chair, alongside eight other people. It took them a while to get things going since this was my first time. The first thing they did was get my port hooked up to a needle, which really is much nicer then getting pricked in the arm, let me tell you. Once that was done they could draw the necessary blood work and then hook me up to saline water before the chemo drugs.

They spent some time educating us on chemo and the particular drugs I would be taking. With the ABVD drugs there is a 99% chance of hair loss, so I am going to be running a vote for which head wraps you think I should buy. That will come later, when I can figure out how to set it up. After they gave us a bunch of information they had to make sure I wasn't allergic to the bleomycin, so I got a small trial dose of this first. Once they determined I was still breathing they got started on adminstering the various other drugs.

I finally convinced my mom and Rob to go and get lunch at this point, since I was finally hooked up, no more talking, and just sitting they decided they could dash to Applebee's an eat. I sat in my chair and read the book I had downloade, while making friends with some of the people around me.

Because it was the first chemo, they administered everything very slowly to watch my body's reaction. This made for a long first day. We showed up at 11am, and finally left at 5:00 pm. They tell me next time will only take 3 hours. I will be going back every other week on Tuesday's for 7 more times. So far I am blessed to not have too many side effects. I was a bit tired last night, but that was partially because of the long day. So far I have not felt horrible, but we will see how that goes. We promise to keep you posted.

Many of you have asked how you can help us out. North Scottsdale will be helping us with meals on Tuesday and Wednesday, on treatment weeks. If you want to help Nancy Gerberding is heading this up. Rob is working with 1st Tempe to offer meals as well. Many of you who don't cook have been asking where we like to get food To Go. We are lucky that we have almost any restaraunt around us: Applebee's, Outback, Chili's, Macayo's, etc.

Most importantly you can continue to send us your love, prayers and hugs. Without all of your support this journey woul be much more difficult Thank you.

Power Ports and Power Rangers

Today the treatment adventure more or less began. We arrived at the outpatient radiology unit at Scottsdale Healthcare Shea Campus at 9 a.m. to have Melissa's port installed into her chest. We checked in and tied up a few loose ends with the very nice billing girl. Melissa and I then went back to the lab so Melissa could have some blood drawn. After that we went back to the "Holding Room" where Melissa put on a hospital gown, jumped into a bed and was hooked up to an IV. A nurse then walked us through the procedure and let us check out a sample port (pictured above). The port makes it so each time Melissa needs blood drawn or needs chemotherapy or a dye injected for a scan, they don't have stick a needle in her arm.

After the blood work came back clear the doctor met with us and then it was time for Melissa to be wheeled back, get drugged up, then have the procedure. At this point they kicked me out of the room and invited me to grab something in the cafeteria. By cafeteria I figured they meant I should run across the street to the Red Robin. I'm not one to argue with medical professionals so I complied.

The procedure only lasted about an hour and when I returned Melissa was back in the "Holding Room" eating a turkey sandwich and drinking a Diet Coke. The only difference was that now she had a piece of titanium just under the skin of the upper right hand side of her chest with a small catheter running under the skin to her jugular vain. She also has two really small but cool incisions that have been glued shut. She won't be lifting anything using her right arm for the next two weeks until the incisions are completely healed. The port, however, is ready for use and will get taken for a spin on Tuesday when she receives her first round of chemotherapy. Apparently between the painkillers and sedatives they gave Melissa before the surgery, she was supposed to fall asleep. By the end of the surgery (and a Dancing With the Stars discussion) the doctor told Melissa, "That's funny, you should have fallen asleep at some point, oh well, we're all done!"

We only had to wait in recovery for about an hour and then Melissa was discharged and was able to walk out under her own power. We were even able to stop at Target on the way home to pick up some odds and ends. Melissa was pretty tired though when we got home and she took a nap for a few hours before we ordered some pizza and watched Grey's Anatomy with some of my Wesley students.

The joke now is that Melissa is a purple Power Ranger because she has a purple power port and she's a superhero. But we already knew that :)

As always, we need to thank everyone who have offered prayers, support and get well wishes. Today we would especially like to thank Craig who watched Colby and the ladies from Tempe First UMC who made Melissa a pink "Love Knots" blanket. She will definitely be using it on Tuesday.

For more info on ports:

http://www.bardaccess.com/port-powerport.php

http://en.wikipedia.org/wiki/Port_(medical)

MUGGA scan and chemo update

As we shared I went in for my MUGGA scan today, which is scan to make sure the heart is healthy enough to withstand the chemo. This involved me getting some blood drown, which they then mixed with an isotope of some kind. I had to wait thirty minutes while that mixed and then I went back in and they put my blood back in my arm. After that they took two pictures of my heart, about 10 min. for each one, and then I was done.

On Thursday I will return to the same place and they will do outpatient surgery to put my porto-cath in so that I can receive the chemo through that.

After the test I called the oncology place to get my chemo scheduled. I had thought that I wasn't going to get to begin chemo until at least two weeks from today because my lung scan is not scheduled until next Thursday. In talking with the scheduler she said that Dr. Hecker has given me the go ahead to begin chemo on Tuesday May 12 without the lung scan. This is great news because it means we are on the right every other week schedule and it means we get to start sooner rather than later.

I also want to take this time to thank everyone for their loving notes and well wishes. We are so lucky to have such a strong support system. If you have any questions or want to know anything just email us. I will let you know how the port install goes on Thursday.

Melissa

Important Family News

Dear Friends and Family,

In early February Melissa and I were concerned when she found a noticeable lump near the base of the bottom of her neck, just above the collarbone, on the left side. She had her doctor check it out and she told her it was probably just a swollen lymph-node from having a cold. To be on the safe side, however, Melissa was scheduled to see the doctor again in thirty days. As the next appointment grew closer, Melissa noticed the lump had actually grown bigger. When she went in her doctor immediately scheduled her for an ultrasound. When that test came back she was then scheduled for a CT scan and a biopsy. When she was called back to go over the results we were shocked to hear that she had been preliminarily diagnosed with Hodgkin's Disease, a rare but very treatable form of lymphoma. Melissa was then referred to see an oncologist for further testing and a firm diagnosis.

When we saw the oncologist at the end of March and he confirmed the diagnosis and scheduled Melissa for a PET scan, which would show how much the cancer had spread. Melissa was then scheduled to see the oncologist again at the end of April to go over the results and a treatment plan.

When we returned in April we went over the scans with the doctor and saw that there were growths that had spread some in her chest area but had not spread to any organs. This officially gave her a stage II diagnosis. The encouraging part is that at this stage the cancer is very treatable with an over 80% successful treatment rate. Unfortunately treatment will include chemotherapy every two weeks beginning mid-May through August. At that point more scans will be done and if the treatment has been successful the cancer will be "finished off" with some radiation therapy. The oncologist is very confident that this will be the case.

So what's next? First, Melissa needs to undergo some routine testing to be sure her body can handle the chemotherapy. On Tuesday she sees a cardiologist to make sure she has a healthy heart. On Thursday she will have out-patient surgery to have a port installed. The following week she will see a pulmonologist to make sure her lungs are healthy. Following that test she will be scheduled for her first round of chemotherapy. Each round is expected to last 3-4 hours. The biggest side effect will be fatigue and she will very possibly lose her hair, however, it will eventually come back.

As you can guess this has been some pretty difficult news to digest, however, we have taken it in stride. We have total confidence in Melissa's doctors and know that we can lean on each other and God to see us through this. We also know that we have the amazing prayers and support of all of our family, friends, and congregations.

At this point Melissa plans to maintain her duties at church and does not plan to take a leave of absence. We are happy to receive private messages and calls from folks, however, please refrain from posting public social media (Facebook, Twitter) comments at this point.

We hope to keep the blog updated throughout this process so you can check back here from time to time. If anything, you will get to see all the latest Colby pictures :)

Thank you all for your prayers and support.

Rob, Melissa, and Colby

Read more about Hodgkin's Disease here