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!

This email update was sent to family October 19, 2010

Hello Loved Ones;



Once again--sorry that I cannot talk on the phone or text back and forth. Tomorrow is Wednesday again; my how time does fly when you are having fun! Jim will receive the second oftumamab treatment tomorrow. This dose will be about seven times the dose he recieved last week. It looks to be an eventful day. We would like to invite you to fast with us to unite our faith. As you know Jim was able to recieve the first treatment but it was very difficult and this time he will be getting much more.



We have been richly blessed by the love of our Father in Heaven and miracles. Jim's oncologist stood at his bedside last night and said, "Jim, we have needed miracles. We have had miracles and now we need to pray for more." It is a blessing to have a doctor who values heavenly input.



And now for the really good news. Jim's huge team of doctors got together last night and put together a plan which will enable him to receive the treatment that he needs but be able to go home. He has been taken off of the two broad spectrum iv antibiotics and put on an oral one. His amphoterrible has been changed to two iv antifungals, one of which will be oral at home, leaving one antifunal iv to be given in his picc line which is very do-able. The course of treatment at the least will be eight weeks, at the most?, with the plans still to head to bone marrow transplant as soon as his bood tests show that his blood shows no traces of fungus. (No more fungus among us)



We will go ahead with the respiratory treatments and work on power packing his diet. He has lost quite a bit of weight but don't you worry because I have found it! Now if I can just give it back...........So we are all very excited to be back together. We haven't been home in three weeks. Much thanks to Kara, Josh and all the girls for taking care of the boys and the business.



We are so grateful for all of you; your love, your prayers, your support and your concern. We love you. Thank you again.



Jim and Analee





Dad snoozing on Kara

This email was sent to update family October 13, 2010

Hello Family;

I so much appreciate all the calls, texts, messages, etc.. I apologize that seldom, if ever do I answer. I am just spending every minute with Jim or the kids. Yesterday Jim had the first chest x ray that was not progressive-it stayed the same as the last one which is very good! His breathing is a little less shallow and his fevers are lower, not gone but with the CLL that's not realistic. The really high fevers they feel are a result of infection. So, its good that they are lower.

Today he got the third dose of amphotericin, or amphoterrible as it is called. It is the strongest antifungal available. He is also on Vancomycin and Primaxin, both very strong antibiotics. He is about to get two units of red blood and then tomorrow he will receive "the wonder drug" as they are calling it. It is Arzerra and only has been available for a little less than a year. It works a little like Rituxan which worked for Jim for about 5 years. Its not easy to get and suffice it to say that heaven had a hand in this one.

I know thousands are praying for Jim and for the miracles he needs. His doctors are pulling out all the stops. I know the Lord is mindful of us. Just when I think "okay, I'm just not sure we can handle this anymore," the tender mericies pour in. Yesterday I was reading in Mark about the man who brough his son that had a dumb spirit to Jesus. Jesus said to the father, "If thou canst believe, all things are possible to him that believeth." "And straightway the father of the child cried out, and said with tears, Lord, I believe; help thou mine unbelief."

I have great faith in the Savior Jesus Christ, in the promises made to Jim by the power of the Priesthood and to the many experiences we have had together. At times it is difficult to balance the barrage of medical information, dozens of doctor's and their opinions and the difficulties Jim is going through with this faith, and so I say with this father, Lord I believe. Help thou my unbelief. Ultimately I have faith in the great plan of salvation and the sealing blessings of the temple and I know that a moment never passes that Jim is not in the care of angels.

Thank you, thank you, thank you for your love and support but most of all thank you for loving my companion. I know he is dear to each of you.

Okay, update, this shows how things go here. It looks like he will be getting the drug tonite after all because they already mixed it and it will only stay good until 2pm tomorrow and they need to run it very slow since he had a reaction to Rituxan. He's already sick from the amphoterrible. The next 24 hrs will likely some the most difficult hours of his life. As always I ask you to again petition the Lord for Jim.

I love you, Analee

Haircuts!

Those of you who know our dad know that he's a fighter. He always has a cheery happy attitude and outlook. When his hair started to come out we all got together for a hair shaving party. All the boys joined in...some have jokingly asked why us girls didn't participate. Dad would have been mortified if we would have even suggested it! He hates whenever we color or cut our hair. Breeana captured all the fun pictures. It was an evening we'll always remember!