A Visit With Grandpa

We were able to go visit grandpa on Sunday evening. While Shon and I sat and talked with him, Grammie was nice enough to sit with the kids and read and adoralbe book to them. She and grandpa had recored the words in the built-in-recorder so it can be read over and over again to the little ones that miss them so much!

Then grandpa got all dressed up in his "safty gear" and came to the wondow and said hello to the kids. It was wonderful and we all LOVED it!

OH HAPPY DAY

This morning the nurse brought in a big smile with her piece of paper. Big circles rounded the numbers and on the side it said "Love, Lisa and Tammy." Lisa has been the night nurse and Tammy, the day. Circled were Jim's counts today; Platelets 72; Hematocrit 28; Neutrophils 500; monocites 10. So when the Dr. came in, she made it official--the counts say Jim is engrafting.

The pneumonia has continued to improve and no fevers since last Monday morning. Dr. Asch says they will begin taking him off one antibiotic at a time and that by Tues (Wed, if you know how they work around here) if all continues to go well we will be on our way home.

Jim continues to experience a great deal of pain in his bones as the marrow does "its thing." We are so grateful for all the many prayers that ascend daily to our Father in Heaven in his behalf.

A Grateful Day

I had the oppor-tunity to go for a walk up (and I do mean UP) in the Avenues on Wednesday. The weather was beautiful and the sun was shining as I walked and walked and walked some more. I walked up and around the old Primary Children's Hospital and then down and around and as I looked up I could see the flags waving beside the State Capitol Building. I walked over and started down a path into Memory Grove and there reaching up above the treetops were the spires of the Salt Lake Temple. I stopped and took a moment thinking about what a wonderful country we live in --a country blessed with the restoration of the gospel of Jesus Christ and the New and Everlasting Covenant. We live in a place that we can walk or drive and within minutes be within the walls of the sacred Temple. Sure, at times we get frustrated with government issues, but we live in the promised land! With all the problems of our medical systems and programs--they still aren't socialized medicine! If we lived in another country it is likely that we would not be experiencing the joys and blessings that we are today with Jim's transplant due to his age and the challenges he has faced and overcome along the way. In those places, the government chooses who will get treament, when they will get it and who will give it to them.

Today is Friday and Jim is doing very well. He has had no fever since Monday Morning and his chest x-rays have improved and his need for oxygen has almost totally disappeared. His counts are beginning to come up which is a great sign of engraftment. JIm's platelets are 64 and his crit is staying up there too. His neutrophils are up 100 from yesterday and his bones are really hurting; though it is very uncomfortable, it is a great sign that his marrow is doing what it is supposed to!!

Tender Mercies

Last night when I checked Jim's temperature, I was less-than-happy to see the results. He had a bit of a fever, so per the rules, we called transplant. They called us back and told us to come up. By the time we got up to the 8th floor and put in a room, his temp was normal. They took blood cultures, vitals, called the PA, called the Dr. and told us to wait while they ran the blood. It all looked acceptable and so they gave us the choice to stay or go. Hmmm, which do you think we chose? We arrived back home around 2am.

We had to be back up to the clinic this morning at 9 for more platelets and a few tests in radiology which brings me to what this post is really about.

This is our angel, Tarra. Tarra has been helping us for months now. Tarra came up to IMC in the middle of the night when no one could seem to find a vein for an iv (after seven tries I might add) She accomplished the iv in one try. She put in both of Jim's picc lines, one of which she did when his platelet count was 3. For three months Tarra came over every single night to give Jim his neupogen shot. She came during blizzards, came after she had worked until all hours of the night and came and changed his picc line dressings on a regular basis and on call if they needed attention. She changed her work schedule to be where we were when we had imaging tests and made sure we had the very best people for each proceedure Jim needed.

Today was no exception. Tarra never lets Jim sit in the waiting room. She brought him back and let him lay down and rest and then when he needed the ultrasound, she had them come right to us and do the imaging. Today when he was particularly exhausted, it was such a blessing. I believe that it was President Kimball who said that most of the time it is through another person that the Lord is able to meet out needs; certainly he has met our needs through the heart and hands and help of Tarra.

FEBRUARY 4th;THEY CALL IT HIS NEW BIRTHDAY

Jim with Fred while he was donating stem cells

Apheresis Machine; removes stem cells and returns the rest

Making sure its the right donor and the right recipient

Rachel hanging the stem cells

Stem Cells

A beautiful sight

Fred and Jim during the transplant

Fred and Donna

I am having a hard time writing about this experience. It has been such a long ride to get here, and once here, it has been almost a sacred occasion. Jim's younger brother Fred, who was his donor, came up on Sunday night. Fred had to go to the bone marrow clinic for three days and have injections of filgrastin to increase his stem cell production and to move the cells into his blood. A challenging few days for Fred--lots of pain, and feeling like he had a sever case of the flu. On Thursday they put a tri-fusion line in Fred's neck, which was also a less-than-pleasant experience. Then the apheresis began. Jim and I were there with Fred and Donna and it was a very emotional time for all of us. The clinic said that they wanted between five and ten million stem cells and over the course of two days, over eleven million were harvested from Fred.

Friday morning Jim was given whole body radiation and then taken to the clinic to wait for the cells to be counted and returned to the hospital. During the time he was resting in the clinic he spiked a high fever and set lots of Docs, PAs and Nurses in motion; within an hour he was admitted to the hospital again. They gave him antibiotics, and the pre-transplant regimen of medications and by the time the stem cells arrived back at the hospital he was fever-free.

The four of us together again waited as they carefully checked the cells and set them up for infusion and began the process which only took about 45 minutes as all eleven million stem cells were given to Jim. Words cannot express the tenderness and gratitude we all feel for gift that Fred has so willingly given.

So now we wait for engraftment which happens somewhere around twenty-one days. Jim never had a fever again and none of the cultures grew anything, so we are pretty sure the fever came from the radation process. He was released from the hospital today and we are so happy to be home. We are grateful for our overabundance of blessings. We acknowledge the Lord's hand in the entire process and send heart-felt thank yous for all the prayers rendered in our behalf.

WE'RE HOME

Well, Jim's platelets cooperated. After coming off continuous infusions to get the count up to 62, they then went to 65 and after twelve hours were still at 58 so the docs said he could come home if we would come to the clinic every day. (Not a big sacrifice since we were coming every day except Thurs anyway, and who cares if you can sleep in your own bed!)

So, one more day of chemo, then Friday is radiation and the infusion of the cells. What a miracle this whole process has been. He is feeling quite well actually. He came directly in the house, crawled into his bed and promptly took a nap for two hours, totally uninterrupted.

Will try to make brief updates frequently. Oh, his galactomannan is now .09 which means he is officially negative for fungal infection. Much love to all.

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.