Rob Kirkpatrick

Dear Friends,

I continue to be amazed at the wonderful and touching ways we have been blessed by your outpouring love and care. May God bless you all richly in return! I know you are praying for us because I can feel it amidst the fervor.

Lee has been hit hard by the last round of chemotherapy. We learned last Wednesday that her hemoglobin level had dropped to one-tenth above the point when she would have needed a transfusion! It scared us, to be honest. Before we knew the cause of her weakness and tiredness it was hard to not fear the cancer was growing. Now, we’re waiting for the Aranesp injection to do it’s work before Lee feels stronger. They say it takes about 10 days. Ugh! And, to top it off, last week was a full chemotherapy week for Lee. So, she’s been hit doubly hard.

Please pray for her energy level to rise.

When I last sent out an update, we had just reached the decision to discontinue home-schooling and were trying to determine which of the schooling options we should pursue. My head has been spinning ever since! It’s just not that easy! But, God is faithful and provides wisdom and direction. He has closed doors for the public schools and left open the door to the private Christian school associated with our church.

One of our biggest fears initially was how to broach the topic of “out-schooling” with our chilren. Some of you already know how that news was received by them. We were both astonished and relieved by their willingness and excitement.

As of today all four of our children are attending the Evangelical Christian Academy. Rob is in seventh grade, Ben in sixth, Maggie in first and Jack in a 3-day per week half-day pre-kindergarten. Each of them knows other children in their classes. We’re satsified with what we know of the faculty and the educational philosophy and goals.

Lee initially felt a wave of sadness as the homeschool chapter of our lives came to a close. But, when she saw that it appeared as though the change would be easy–even welcome–for our children, her sadness quickly became relief as the burden was lifted from her shoulders. I’ve got a mixed bag of emotions myself. I’m comfortable with the decision, but a little (no, a lot) concerned about where the ability to afford the tuition will come from.

Would you pray with us for that provision to be made clear? The cost of four chilren suddenly in private school is something for which we were not prepared.

Thankfully, both the school and our church have mentioned that they will be able to provide some help. I have yet to hear what that assistance will be. I’ll be relieved with whatever can be given. The school’s budget is already tight, and the church’s budget has probably been affected by the transition we’re in to find a new senior pastor. My hope is that we’ll be able to have this school year covered. We’ll deal with next year when the time comes to begin making such plans.

Lee’s next CT-scan will probably be in mid-December. The radiation therapy option we were looking into in Denver has been put on hold until the tumors in Lee’s liver shrink and enough of her liver regenerates. As it is now, any damage the radiation could cause to the functional liver that remains might become life-threatening to Lee.

We’re praying that the God above all gods, who doesn’t need to use medicines in order to heal, will bring about healing either through the Erbitux and Camptosar, or simply by Divine decree. And, we’re praying that He would keep us strong by His Spirit while we await the fulfillment of His will.

Thank you, again, for your kindness, love and support as we weather this storm.

Rob

Mark 9:24b

Yesterday we spent most of the day in Denver exploring an anti-cancer therapy called Selective Internal Radiation Therapy. You can learn more about this at this website: http://www.sirtex.com/ It’s truly amazing what we are learning about the creative ways doctors and scientists are trying to conquer this disease.

Whether, or not, Lee will be a candidate for this procedure remains unclear at this time. To be honest, I’d be surprised if Lee was eligible. I hate writing that, but since the cancer is advanced and is throughout her liver, the procedure may be one that we can’t pursue until the tumors decrease and the liver begins to grow back. Can you see the prayer request in that? It’s hard to learn about a potentially helpful option in this fight and then discover that we’re very likely past the point where it is accessible to us.

We’re beginning to look into other education options for our children. The load and the complexity of homeschooling multiple grade levels is becoming too burdensome to carry at this time. There are a couple charter schools we’re exploring, as well as a private school connected to our church. The two charter schools are not taking any additional students at this time, which is frustrating. We’d appreciate your prayers regarding this decision, as well.

Lee had her second dose of Erbitux today. So far, she’s tolerating this as well as can be expected.

Our prayer is still that God will turn this cancer around and restore Lee to complete health. We know He’s not dependent upon medicine, yet often uses medicine to bring about health and restoration. Our lives are truly in His hands at all times; which is pretty scary when you think about it.

More and more, I’m reminded of Mr. and Mrs. Beaver’s exchange with Lucy as she inquired about Aslan the lion in C. S. Lewis’ classic, “The Lion, the Witch and the Wardrobe”:

“Is he — quite safe? I shall feel rather nervous about meeting a lion.”

“That you will, dearie, and make no mistake,” said Mrs. Beaver, “if there’s anyone who can appear before Aslan without their knees knocking, they’re either braver than most or else just silly.”

“Then he isn’t safe?” said Lucy.

“Safe?” said Mr. Beaver, “Don’t you hear what Mrs. Beaver tells you? Who said anything about safe? ‘Course he isn’t safe. But he’s good. He’s the king. I tell you.”

Thank you for your continuing love and support.

We met with Dr. Young today. He gave us two options to consider. First, to try a drug called Erbitux. And second, to try an oral chemotherapy drug called Xeloda. We chose the first one.

We liked the first option because we can combine Erbitux with other chemo drugs like Irinotecan, leucovorin and 5-FU. This way we can attack the cancer from several fronts. The ability to do this was one of the primary reasons we opted out of the clinical trial we were exploring. The trial drug, called panitumumab, is a new drug that’s designed to work the same as Erbitux and would have been the only drug Lee was to receive while participating in the trial.

You’ll recall that I mentioned the lack of insurance coverage for anything associated with the trial. I’m concerned from several of the reactions I’ve received that I may have inadvertently communicated that the lack of coverage was the sole reason for our decision. That’s not the case. It was a factor, but not the primary one. We were more concerned about the limitation of treatment to one avenue, alone.

So, what can we expect? Erbitux is a monoclonal antibody that’s designed to go after a specific molecule called Epidermal Growth Factor (EGF). EGF often over-expresses in cancer cells. When this is happening, Erbitux has shown to be effective in preventing cell division by interfering with the EGF receptor on the cancer cells. Lee’s cancer has not been found to over-express EGF, so why are we using it? Well, there have been several reports of cancer patients who saw promising results even though their cancer didn’t have EGF.

The second option is a single treatment option where the drug, Xeloda, is taken daily for two weeks at a time. This drug converts to 5-FU when ingested and can provide prolonged exposure of a chemotherapy agent as compared to the typical 48-hour exposure. It’s an option, but not as hard-hitting as the one we’ve chosen.

We’re still exploring the selective internal radiation option, and will know more next week after meeting with an oncologist in Denver who performs this treatment. I’ll send out another update when we know more about whether we can pursue this option further.

Please continue to pray for Lee. She’s now back in full-blown chemotherapy and will be feeling the dragging effects of these intense drugs.

We’re still hoping for complete healing. We know that God is above the medicines He sometimes uses.

We just got off the phone with the Dr. about the results of the CT scan Lee had last Friday. Everything seems to have grown.

This is distressing, but not as much of a blow as earlier occasions when we received similar news. The pain Lee began experiencing last week had us both fairly convinced that the tumors were growing. Today’s news only confirmed what we had been suspecting.

So, as I mentioned earlier today, we’ll be back with Dr. Young tomorrow to try, once more, to get these things under control.

We’re trusting that God will make His will known. And we’re pleading that His will is for Lee to be healed from this cancer and restored to good health.

Thank you for adding your voices to ours.

We learned today that we would have no insurance coverage of any costs related to the clinical trial drug. I have no idea what the costs would be for administration of the drug. My sense is that we’d be able to find a way to cover those costs ourselves. But, that’s not the only obstacle.

A more significant and larger concern about this lack of coverage is that any complications that could arise would also have no coverage. If Lee had a severe reaction that required hospitalization, we’d be on our own. That was enough for us to seriously reconsider what we should do.

We prayed for wisdom about whether to proceed. Shortly after that prayer, Lee mentioned that she really didn’t have a sense of peace about continuing with the trial. Therefore, we’ve decided that the door has been closed.

We’ll be back with Dr. Young tomorrow to begin with his next recommendation. We are looking forward to starting something that’s more of a known entity than something experimental.

There’s also another type of treatment we learned about from a friend who’s going through a similar journey with his wife. It’s called Selective Internal Radiation Therapy and it provides a means of delivering radiation directly to the tumors in Lee’s liver. General radiation is not an option because it causes too much damage to an organ like the liver. So this option is something we’re interested in, and will learn more about next week when we go to a hospital Denver where this treatment is being done.

The results of the CT scan Lee had last Friday are still unknown to us. We may hear later today if anything new will have been revealed. A concern (read fear) we have is that the cancer has continued to grow. Lee began experiencing a lot of pain last week. Pain medication has done a fair job of keeping it manageable.

I wish I had something more uplifting to share with you all. It feels a bit scary to be declining something that was pitched as an option to gain control over the cancer. Faith is tremendously meaningful. Knowing that God is sovereign and that He is completely in control provides comfort. But, the “The Lion, The Witch and The Wardrobe” continues to echo in my head: God is good, but He’s not safe.

Thank for your continued prayers, calls, e-mails, cards, gifts and visits. We’ve been truly blessed to see the “church” at work.

We met with a new oncologist today for an initial screening to see if Lee can get into a clinical trial for a new monoclonal antibody drug that is showing some promise against colon cancer. Pending satisfactory results with blood-work, an ECG and another CT scan, the plan is for Lee to begin receiving this drug, called panitumumab, on the 12th of October. She’ll then get more every two weeks until either we no longer see satisfactory results, or Lee can’t tolerate the drug, or God chooses to perform a miracle and heal her completely.

Prior trials with this drug have shown what we would consider to be positive results in almost 50% of the patients receiving it; 10% of them experienced a reduction of tumors to at least half their size, and 38% either remained stable or saw reduction to at most half their size. Yes, that means 52% saw no positive effect and discontinued its use. And, yes, that’s scary to think about.

We’ve been so appreciative of your words of encouragement and your prayers. We need them!

Choosing to Remain Hopeful.

Let me just start by thanking you all for your prayers and expressions of love and concern. I hope I’m not beginning to sound repetitive, because they mean so much to us. We have been overwhelmed with the kindness!

When we met with Dr. Young today, he restored our dwindling hope by explaining that there are still several options available for us to pursue in Lee’s battle. He suggested that we first consider enrolling in a clinical trial of a new anti-cancer drug that is being handled at a different cancer clinic here in town. As he explained it, this is a window of opportunity that he thought we should pursue.

If we had chosen to start with the next course of action in Dr. Young’s arsenal at his clinic and were not satisfied with the results, we wouldn’t be eligible to participate in the trial. So, our plan is to enroll in this trial. And, this way, if we try the new drug and are not satisfied with the results, we would then switch back to Dr. Young’s next plan.

We don’t know much about what this will entail. It appears as though the drug will have less-intense side-effects, and may be something that’s administered in pill form.
We’ll know more in the coming days. Meanwhile, we covet your prayers.

In January of this year I got an urgent call from Lee, my wife. She suddenly felt as though she was going to have diarrhea and was shocked to learn that she was passing a lot of blood. We went to the hospital, stayed up through the night as she tried to drink what seemed like gallons of Go-Lytely, had a colonoscopy that next morning and discovered a golf-ball-sized tumor in her right colon. Providentially, there was a surgeon available that afternoon to do a resection of Lee’s colon.

We got the news a couple days later that the tumor was cancerous and that one of the twelve lymph nodes that were removed showed signs of cancer. The next week we met with our oncologist to learn that Lee had stage III colon cancer.

The ball was put quickly in motion to begin chemotherapy with Oxaliplatin, Leucovorin and 5FU. We were to go in bi-weekly for 6 months with the hope that we’d then be able to put this all behind us.

In late May, however, we recieved distressing news. Lee had been having discomfort and pain in her right flank. A CAT scan revealed that the cancer had been spreading and had metastasized in several places in her liver. Can I just say that it would have been easier to have been kicked in the face?

We went for a biopsy of the liver mets and an MRI to rule out mets in the brain as a source of the headaches Lee’s been having. We learned that the MRI was clear–thank God. But the liver mets were, indeed, more colon cancer. Why did it continue to spread–and so quickly?

We had a CAT scan in January just before Lee was released from the hospital that only showed two small statistically insignificant blips. Her CEA counts were at ZERO, and probably still are.

Our oncologist immediately switched Lee over to Avastin and Irinotecan (Camptosar) in addition to leucovorin and 5FU. The plan has been for Lee to have CAT scan after four treatments with these drugs.

The first of those scans was in mid-July. It was then we learned that the cancer remained unchanged from the one in May when we learned it has metastasized. That was a relief, but a very unsettling one because the cancer was still there.

Have any of you heard of cancer spreading during chemotherapy? What about Stage IV colon cancer with no CEA?

We haven’t lost hope. But, it’s hard sometimes. The doctor was, and has been, hopeful all along. In fact, every time I try to find out what the latest and greatest is for treatment of colon cancer he already knows about it!

We have a fantastic group of friends at our church. We know that there’s an army of prayer warriors asking God to heal Lee. But, we’re looking for others who would be willing to correspond with us who may have some first-hand experiences with the kinds of disappointments we’ve recently had. We’d love to hear from other Stage IV survivors and fellow fighters!

UPDATE: Lee had a CT scan today, September 20th(2005). We learned from Dr. Young, our oncologist, that the scan revealed that the cancer has grown, once again. He didn’t yet know specifics beyond the radiologist’s report that the tumors have slightly enlarged. However, we took a copy of the scan home with us and could see for ourselves that there has been a disappointing change.

We’ll know more when Dr. Young has had a chance to review the pictures himself and do some research to formulate a plan.

We meet with him this Thursday.

Needless to say, we are dealing with a lot of disappointment and fear.