A Pathway Paved with Miracles

Alaina suggested that perhaps I give a brief history of Jim's cancer. About nine years ago Jim was diagnosed with CLL-Chronic Lymphocetic Leukemia. How lucky can you be to essentially have both leukemia and lymphoma? For about six years Jim's CLL was kept in really good control with a monoclonal antibody called Rituxin. Every six months he would have four weeks in a row of treatment and then we would go on with life. Though the four weeks were a bit difficult, our lives, as they were, remained fairly normal.

Then things got a little more challenging and over time the treatment schedule was stepped up and different drugs added. He did an entire round of FCR which was difficult but gave some good benefits though his immune system took a bit hit and didn't recover for several months. The FCR gave him a remission of about 14 months or so. Definitely not what the doctors had hoped for, but better than no months.

In December of 2009 Jim had a terrible pneumonia and was hospitalized for about a week. During that time he was give a new test that did not exist when he was first diagnosed. What the test showed was that Jim had a 17P deletion, one of the arms of the 17th chromosome was missing. This put a new spin on things because, well, its known as the dreaded 17P deletion. To make a long medical explanation very basic and short--it just makes the disease much more difficult to treat and much more resistant.

When Jim's white count (that's where his cancer is; lymphocites) reached 220,000 the doctors were researching what the best options would be so he was put on a course of Trianda and Rituxin. Unfortunately he reacted to the Rituxin this time since his counts were so high, so he was just given Trianda. His white count would decrease with the treatment but jump right back up to the same level by the next treatment. MD Anderson in Houston was contacted about a trial they were running with CLL but they reported that "he did qualify for the trial but we feel he will need a bone marrow transplant sooner than later."

So...we were sent to LDS Bone Marrow Transplant for a consultation. To make another long story short, the consultation was very depressing. We decided that we would only do this if we absolutely had to. Well, we absolutely have to. As preparation for the transplant Jim was given two rounds of ICE, a very nasty combination of chemotherapy which landed him in the hospital the first time with fevers and no neutrophil count (infection fighting white cells.) Oh, very important side note: all of Jim's siblings were tested and his youngest brother Fred is a match and willing and ready to donate.

During the course of ICE Jim had no neutrophil count for six weeks which means he had NO protection against things that float around in the air. We all breathe these things and our bodies just fight them off, but his could not and when we went for a bone marrow test it was discovered that he had fungal pneumonia which resulted in a three week hospital stay.

His team of oncologists came up with a new plan. Peter Christensen was able to get Oftumamab authorized which was no small task, in fact it was a miracle. This is a drug that has only been on the market since 2009 and is the younger, stronger, better brother to Rituxin and was specifically created for refractory CLL, meaning CLL that has come back or has not responded appropriately to treatment. The drug has to be shipped in as it is not even carried here. In addition, the oncologists got Jim set up to take Revlimid which is a oral chemo only FDA approved for Multiple Myeloma but used successfully for CLL. As such, the drug company is providing this drug to us as a trial.

I am so happy to report that Jim's white count is lower than it has been in about four years. In order to recieve the bone marrow transplant, Jim's body must be totally free of the fungal infection and in order to get rid of the fungal infection his CLL has to be under control so he has some neutrophils.

Tomorrow is treatment number four of Oftumamab. How grateful we are for one miracle after another to bring us to this place. We acknowledge the Lord's ever-present hand in this hard, but successful process. Prayers and fasting of thousands; they have made all the difference. It is impossible to express the gratitude we feel.

Because of Jim's severely compromised immune system, visits are extremely limited. We know so many people love and care about him! Feel free to leave him your thoughts and well wishes here.