JUST A BLIPP

So, my last entry was posted while Jim was getting platelets in the Bone Marrow Transplant Clinic, right? Well, as we were leaving the Dr. grabbed us and pulled us aside. We tried not to make eye contact but it didn't work as there were concerns about Jim's low blood counts. So as soon as Jim recieved his central line we were lovingly escorted upstairs to the Bone Marrow Transplant Unit--a section of the hospital which could be compared to maxium security lockdown. We were in one room for two days and then were moved to another.

We are quite grateful for the change in rooms. We can now hear each other speak over the positive air flow ventilation system (which I am grateful for) and we have more than six feet to navigate in. Its not quite that bad, but it was really small.

So we will be here through the process of transplant this week while they carefully watch him and give him lots and lots of platelets. They stopped the continuous infusion this morning and checked his counts this afternoon and they actually rose two points which is fabulous. They will check them again in the middle of the night, oh how they love to do things in the middle of the night.

As always, thank you for your prayers and sweet comments.

TRANSPLANT TIME

Well, haven't the updates been great? So sorry but we have been enjoying time together and then we met with the Bone Marrow Transplant people the first of January and wow, the ball really started rolling.

This past Monday Jim had another Ofatumamab infusion. He has had a gazillion tests which I will not expound on; only say that each has either been great, good or satisfactory to go ahead with the bone marrow transplant. Jim's brother who is a perfect hla match passed his physical as well and is willing, ready and anxious to get started.

Today Jim is getting platelets and a central line placed. I guess his picc line tubes aren't sometimes large enough for the infusion of the marrow.

The whole process begins on Monday. Jim will receive fleudarabine on Mon, Tues, and Wed. Then Thurs will be a rest day. Then Friday he will get a low-dose total body radiation and the marrow will be infused late in the afternoon or early evening. It has been described to us as being rather anti-climactic as it very much resembles a blood transfusion. Miraculously these cells are infused and then know how to find their way to his bone marrow, which by the way, has room now to recieve them, which several months ago it did not.

When we are finished we will go home to our quaranteened house for the beginning of the process. It takes two to three weeks for his brother's cells to begin to engraft. We will be making at least three trips a week to LDS Hospital and that's if there are no bumps, which inevitably there will be. Still, the travel time is much better than being inpatient which they say to plan on at least once during the first few weeks.

We are thrilled, a little scared, excited, dreading, happy, but most of all grateful. As you can see we are experiencing a myriad of emotions as are all of our children. We so much appreciate all the prayers, fasting, names on prayer rolls and love which continues to be extended to us. Every single thought and prayer has made a difference. We love you.

I will make a renewed attempt to keep the blog posted so you can see what is going on, even if they are brief.

OUR CHRISTMAS MIRACLE

The past couple of weeks have brought so many more miracles. Jim had CT scans which showed all his lymph nodes reduced in size and the spots on his lungs reduced quite significantly. He has gained another five pounds and his galactomannan serum test which is the test to measure fungus has gone from 6.28 to 1.18. .5o and under is considered normal, so we are close! We spoke with Bone Marrow Transplant and we have another appointment on Jan 5th with all the doctors up there.

Yesterday we went for Jim's routine Dr. visit and blood tests and "WOW!" is all I can say. His total white count is 18,000; his crit is 28, and (after no platelets for over four weeks) his platelet count has risen to 16!

This afternoon Jim and I attended a session at the temple, something we have missed doing for months. It was a really small session and we (rather conspicuously mask and all) sat in the back. As many of you know, medical miracles are not the only variety we are experiencing these days. The Lord truly has blessed us beyond comprehension and we are ever so grateful.

Last Weekly Oftumamab Treatment! 12/1/10

This is the Oncology Gang (at least the ones there that day!) Dr. Litton is the one with the huge smile. Oh how grateful we are for Greg Litton. He has been Jim's Oncologist for about nine years now and has become more of a dear friend then "doctor." He calls occasionally just to check up on Jim at home. It is so wonderful having medical providers that have faith and listen to the spirit.

The last weekly treatment went very well. The next Oftumamab will be in four weeks. Jim continues to take Revlimid orally every day and is getting stronger every single day. Oh, by the way--he was up six pounds.

Thank you Dr. Litton, Dr. Nibley, Shirley, Anne, Michael, Bruce, Pat, Stephanie, Ann, Lisa, Deuce, Stef and all the office staff. Did I forget anyone? Thanks for making hard things less difficult. Thanks for believing in miracles with us. Thanks for shedding tears with us both happy and sad. Thanks for your tenderness, your jokes, your cheerful smiles and your sensitivity. I don't know how people do this without such a loving medical family.

Greg--once again thanks for making the hard decision that night in the hospital that nobody else wanted to make. Thanks for believing that Jim was going to get better regardless of the odds. Thank you for being such an integral part of our miracle.

Thanksgiving 2010

Thanksgiving this year was absolutely wonderful! We had Dad with us and there really isn't anything that we could be more grateful for! Here is some of the gang. We are getting to big to all fit around one table!

Back to Church!

This has been an absolutely fansastic week. It was the rest week from Revlimid, one of his chemo drugs and Thursday's Oftumamab treatment went even smoother than last week. Jim's total white count this week was 25 thousand. He was able to have Presidency Meeting again Wednesday evening and he even went to work for a few hours on Friday. Saturday morning we made a quick stop at IMC Hospital to visit a dear friend recovering from surgery. This morning we attended Sacrament meeting for the first time in several weeks. Jim's definitely not to keen on the mask that has been added to his attire but has been counseled by his doctors to wear it whenever he is outdoors or around people; so pretty much whenever he leaves home. This evening was the crowning gem for Jim (no pun intended) as he was able to attend Stake Priesthood Meeting. Tonight when he returned home he was tearful with gratitude. On this, the beginning of the week of Thanksgiving we indeed have much to be grateful for.

CHECK OUT THE WHITE COUNT!!

Yesterday's treatment started with Jim putting on one pound. That doesn't seem like much but believe me, putting one on is better than taking another five off. (at least for him--I am another story all together!)

Then they drew his blood for the pre-treatment counts. When she handed me the paper I handed it back to her and told her she needed to run it again. I cannot remember his white count being so low since he was first diagnosed. The Oftumamab treatment went very, very well and things only got better when Dr. Litton came in and brought the results of Jim's latest chest x-ray, and I quote the radiologist, "These are improved as compared with the prior exam of approximately three weeks ago." It is considered good if the x-rays even show stability by not getting worse, but fabulous that they are showing improvement. In addition Jim has not spiked a fever in over ten days. When his treatment was complete they ran the CBC again and it was even lower.

I cannot express how grateful I am for all the improvements in Jim's health. At times it seems like little teeny baby steps but we are definitely heading in the right direction. As always I wish to express my gratitude for prayers and fasting and love.

We continue to work on Jim's weight. You would think I could help him out in this area! We are making little steps here as well. Yesterday, even during the treatment he ate whatever I gave him and he was able to keep every bit of it down.

Thank you for your concern. He honestly feels your love and prayers.

Today the Elder's Quorum (I saw a few High Priests as well) of the Park Ward came over and worked in the yard. They trimmed trees, hauled away branches, leaves and trash and got the yard ready for winter by removing the volleyball net and poles and the pump off the big waterfall. They trimmed all the water folage by the pond and cut the tops off the allergy-inducing bunch grass. I can actually look out and see the fishpond now! The Riddles have come over two different times and spent hours hauling and cleaning and Shon R. graded the horse pasture that Carol Homer has diligently sprayed for months. Two weeks ago the students and teachers from Elementary II and the Middle School of the Riverton Montessori came and weeded flowerbeds like crazy. Those kids know how to work!! It was perfect timing because the following day (in the rain I might add) the 21st Singles Ward showed up with tools, tractor and energy to load tons of topsoil mix in all the flowerbeds. They pulled one stump from a dead tree that Joseph and Lafe had cut down--it took two diesel trucks to pull it out! We are so very grateful. The man-hours put in our yard in the past month is well into the hundreds and you can certainly tell by looking at it. I am sure the neighbors would tell you it looks better than it has in about five years! A deep heart-felt thank you to each of you who spent time in our yard. It looks beautiful.

Lunch with A Good Friend

Yesterday's treatment went well. Thanks for the contiuned prayers in Jim's behalf. We feel richly blessed.

Wednesday night was a great night. Jim was able to have a Presidency meeting at the house. Some joined by conference call because there was illness in their homes. Other than his family, nothing makes him happier than serving in the Gospel of Jesus Christ.

Love,

Analee

Evan's Birthday

Little Evan had a birthday and turned 4 on Monday! Dad was getting platelets all afternoon but I told Mom that we were meeting at McDonald's for dinner. I in no way expected them to come but they surprised us all and drove the extra 30 minutes for a little surprise. Grammie (mom) came in a got Evan and took him out to see Grandpa in the car. It was such a sweet and special thing for them to sacrifice for us like that.

Thank you dad, as always you are always only thinking of others. We love you!

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.

Happy 14th Birthday Heber!

Heber's Birthday was celebrated in the cozy hospital room with a giant Costco Pizza October 21st. Proof that our family can make a good time anywhere!