Monday, August 16, 2010
Today Steve met with Dr.Pulsipher to get the results of the bone marrow aspirate and biopsy that he had a week ago. His result was zero leukemia in his bone marrow, and absoultely no more minimal residual disease or MRD!!! Notta, nothing, none. We are so thrilled with this news, and so thankful for this great blessing from our Father in Heaven and His Son, Jesus Christ. Steve and all of us have so appreciated all the prayer, fasting, faith, strength and encouragement from all of you, our friends and family. We never could have made it without you.
Steve will now begin to taper off the immune suppressing drugs that he has been taking, and his immune system will start getting stronger. He will continue some treatments to help his body get over the reaction he has had against the donor stem cells he received.
Thank you all for sharing in our Joy!
July 29, 2010 was a beautiful bright summer day. Steve and Taryn, along with their immediate families, met at the Salt Lake Temple at 11:00 a.m. and Steve and Taryn were sealed for Time and all Eternity in a beautiful marriage ceremony. This was the day Steve and Taryn had been waiting for--for a long time.
The Temple gardens were spectacular and in full bloom, but Taryn was the most beautiful of all. A picture of patience, courage, faith and now joy, Steve and Taryn glowed with their love and devotion to eachother.
Because Steve's immune system is still very minimal, he could not have a big crowd at his wedding or a reception after.
Later that afternoon, the two families gathered at Biaggi's Restaurant for a wonderful Italian wedding dinner. Both sets of parents gave a tribute to the couple, along with John, Steve's twin brother, who was the Best Man. Everyone watched a fun wedding slide show of Steve and Taryn growing up through the years, while feasting on dessert. The event concluded with Steve and Taryn giving their remarks and goodbyes to their families. Then we wished them off to their Honeymoon in Park City, Utah with bubbles on the sidewalk, ...and they drove off into the Sunset!
Friday, May 21, 2010
Steve was released from the hospital on Friday May 7, just in time for Mother's Day Weekend...a real treat for mom. He was able to start eating real food once at home, instead of IV nutrition and jello, applesauce, etc. His skin has been healing little by little from the level 4 (highest level possible) graft vs. host disease. This caused a burning rash all over that caused most of his skin to die and peel off.
One of the treatments that has helped the most to bring the graft vs. host disease back to a level 1 on his skin is called photopheresis. This involves taking some of Steve's blood out, spinning it in a centrifuge, separating the white cells out, and putting medicine in the white blood cells. The white blood cells are then exposed to UVA rays on a mini-tanning bed, which activates the medicine, then they are put back into Steve's body. This small percentage of white blood cells are then sluffed off due to the medicine, and the body is able to return to a more balanced immune system.
Steve is having this treatment twice a week up at Huntsman Cancer Hospital. He is making progress in getting over the skin rash little by little. He is resting up and hopes to start exercising soon.
Photos: The photopheresis machine separating the white blood cells from the red cells prior to exposing them to the UVA rays.
Steve being his happy self while being hooked up for the treatment(note
rash on his arm).
Friday, April 30, 2010
On April 15, 2010 Steve was released from the hospital and joyously came home. He had at the time a level one of "graft vs. host disease" (GVHD) due to his body cells fighting the donor's blood cells. This is a natural reaction to a stem cell transplant, and caused a red measle-like rash over Steve's whole body. However, after four days at home, the GVHD worsened to a level 2 or 3 (of a possible 4) and Steve had to be re-admitted to the hospital.
The rash became a solid red/purple over most of Steve's body, and it was burning his skin from inside the cells-out. It caused so much pain on the bottom of Steve's feet and palms of his hands that he could hardly walk for about 7 days. While in the hospital Steve was sent to Huntsman Cancer Hospital twice a week for a special treatment called photopheresis to try and balance out his white blood cells from this extreme reaction.
Finally on April 25, the rash began to let up a little, especially on Steve's feet and hands. Much of Steve's skin is blistered and peeling all over in big areas, sometimes leaving new raw skin exposed. Steve's face is returning to pink, instead of bright red!
Steve has shown a lot of patience and strong resilience in a long and challenging ordeal. He is cheerfully waiting to be put back on real food, hopefully tomorrow, instead of IV nutrition. He (and we also) are so thankful he is really starting to mend.
Tuesday, April 6, 2010
Steve's ANC number (a combination count of his white blood cells) hit the goal of 500 today--that is when his stem cell transplant is considered to have "engrafted" if it remains at that count in the following days. This means that those stem cells from his donor have found their way into the cavities of Steve's bones and are producing new marrow and white blood cells. The doctors are surprised that this has happened so early-this is the early end of the scale. We are thrilled and so grateful, as is Steve. Thank you, thank you for your prayers and faith in Steve's behalf.
Now Steve is just working toward being able to eat without IV nutrition and getting his strength back. He will keep getting stronger and stronger as the days go by. The doctors will be telling him how soon he can be released to go home, as they watch his progress over the next few days.
Following a beautiful Japanese tradition, the Young Single Adults from Steve's Stake sent him a wonderful gift of healing and hope by folding 500 paper Origami Cranes and sending them to Steve's hospital room. The cranes are beautiful and will be a keepsake for Steve long after he is well.
More importantly, the Young Single Adults held a special fast for Steve and Michael Hurst on March 28. Steve was very grateful for their faith and strength in helping him get through this sickness.
Wednesday, March 24, 2010
Steve finally had his Periferal Blood Stem Cells transplant on Tuesday March 23! The stem cells arrived from the anonymous donor (from the national donor registry) at about 2:30 p.m. in a red cooler, carried by a courier in a white lab coat. Just seeing the all-important red cooler sent a thrill through my body, since we had waited for this moment for a long time.
We were just waiting for the doctor to arrive to get things started. Steve’s family and fiancée Taryn gathered either in the room, or on laptop through “Skype” (including Romney, Christy, & Eva from Boston). Next the doctor and all his staff entered with outrageous hats, a Happy Birthday banner, and singing a rousing version of Happy BMT (Bone Marrow Transplant) Birthday To You!”
Doctor Pulsipher is a special doctor. He is the head of Bone Marrow Transplants at Primary Children’s Hospital, and quite well known in this field nationally. However, more importantly, our two families have been neighbors for nearly 20 years and raised our families together in the same LDS Ward. His daughter Katie, as well as Katie’s husband Jeff, went through school with Steve and John. We know their family to be full of talent, and of the highest character. We count this having Dr. Pulsipher as Steve’s doctor as one of the most special miracles of this whole adversity.
Dr. Pulsipher informed us that the donor had given Steve a very generous harvest of stem cells-enough in fact to do 5 transplants! Because of this, they infused Steve with twice the amount of stem cells as they usually do. They were also able to freeze enough stem cells for future infusions for Steve if the need comes up. The cells were then infused into Steve through the port in his chest, over 48 minutes time and began to flow into his bloodstream.
We, as a family, are so thankful for the Atonement of our Savior Jesus Christ, in whom we place our faith and trust that He is watching over and blessing Steve, as we go through this process.
Sunday, March 21, 2010
Steve started his pre-transplant treatment on March 15 with three days at Huntsman Cancer Institute as an outpatient. Steve went to two sessions/day of full-body radiation to get rid of all his own bone marrow. He was able to tolerate this treatment pretty well with minimum side effects. On Thursday March 18 Steve was admitted to Primary Childrens Medical Center for the final preparations for the transplant. He has been having four days of heavy-duty chemo. One chemo he was given actually sweats out onto his skin and can cause skin burns. So to avoid that, he showers three times a day-which has kept him pretty busy.
Monday March 22 Steve gets to just rest. However, this is the day that his donor from the national donor registry will donate his stem cells. We found out that this will be a tranplant of periferal blood stem cells, rather than a transplant of the donor's bone marrow. These stem cells will be infused into Steve like a transfusion, then they will travel through his veins and find a place in the cavities of his bones, and there set up residency and prepare to "engraft" into Steve's body and start making blood for Steve.
Steve will have his transplant of stem cells on Tuesday March 23. This day will become "day Zero" and we will begin counting Steve's progress from here on out as "day 1, day 10, day 30, etc. from the day of the transplant. The doctors will be waiting to see when the new cells engraft into Steve's body, which will take about 2-3 weeks.
Steve and we all know that he can't move forward in this quest to be cured until he goes through this coming hard but important part of the treatment. Steve is upbeat and positive for these next 3 weeks, as are we his family. Thanks again to all family and friends for your support, faith, prayers, fasting and kind wishes. We couldn't make it without you.
Photo: Steve with his neice, Katie. They both were going into PCMC that day for treatments. Steve was having surgery to install a new port in his chest, and Katie was having an echocardiogram, a periodic check-up on her heart. Katie was sharing her Curious George in doctor's coat with Steve for comfort.
Thursday, March 4, 2010
Steve had a little change in scheduling; On Feb. 23 he went into the hospital to be treated for the RSV virus. He had to go to University Hospital because Primary Children's was completely full with RSV patients from this recent outbreak. It was a wild new world at this hospital. One day I arrived to visit Steve and there was an armed guard outside his door. I thought maybe I had violated visiting hours, but came to find out that an inmate was being treated next door to Steve. We are glad that Steve has almost completed the treatment for RSV and will be coming home on Mar. 5.
This illness has meant that Steve's bone marrow transplant had to be re-scheduled. He will now enter the hospital on March 15 to begin the radiation treatments prior to his transplant. He will stay in the hospital and undergo the actual transplant on Tues. March 23, just a day before the expected birth of Steve's new little niece, Tyler & Amanda's baby. Then it is onward and upward to recovery!! He will go through a six-week stay that helps him heal while the new marrow grafts to his body and starts producing new bone marrow, about a three-week process. The doctors will help Steve fight off some of the early rejection issues that most likely will come up.
We are having a family fast for Steve this Sunday March 7, and invite any friends and family who would like to, to join in and combine their faith and prayers for Steve with ours. Thanks to everyone for all you have done for Steve and us already!
1 Nephi 7:12 (Book of Mormon)"Yea, and how is it that ye have forgotten that the Lord is able to do all things according to his will for the children of men, if it so be that they exercise faith in him? Wherefore, let us be faithful to him."
Photo: Steve and his friend, Michael Hurst, also going through Chemo treatment for cancer; two great guys!
Sunday, February 14, 2010
Steve proposed to Taryn Nicolaides on Valentines Saturday, Feb. 13, 2010! She said Yes!!
Steve invited her to a little afternoon 'activity' before their Valentines dinner date. He drove her to the Real Salt Lake professional soccer stadium and said they were going to go on a little tour. Taryn loves soccer and has played for Air Force, as well as being an assistant coach for a womens' college soccer team. Steve directed her around the deserted stadium for a few minutes, (arranged with owner Dave Checketts, a friend of Steve's from his mission). Then they heard a helicopter approaching overhead and Steve said "let's go see it." To Taryn's surprise, the helicopter circled around and set down on the grass directly in front of the stadium entrance with Taryn and Steve watching. A passenger set out a large box on the ground, then the helicopter took off again and flew out of sight.
Steve went and picked up the box with Taryn on the grass. Taryn thought it was a pretty spectacular presentation for a Valentines gift. They walked back into the stadium to the balcony where Steve had flowers and chocolates, and Taryn started to open the large box. Inside she found a little ring box-then she knew what was happening. Steve dropped to one knee and asked her to marry her for time and all eternity. She said yes!
Pretty exciting time for all. No date is planned yet for the wedding-possibly late summer if all goes well. Congratulations, Taryn and Steve-we love you!
Wednesday, February 3, 2010
Steve just finished his third hospital stay January 26-30 and had another large dose of chemo. He got his number back on his last bone marrow test on Jan. 26; the number was .10%, slightly down from the last number of .12%, but still not a 0%. They have told us that they will go ahead with the bone marrow transplant now anyway, that it is really the only cure option to overcome Steve's own cancer-producing marrow.
Steve will enter the hospital on March 2 and the radiology team will prepare him for transplant by killing off all of his own marrow. On March 9 Steve's donor from the national marrow registry will have his marrow harvested. The next day, March 10 is the day Steve will receive the bone marrow transplant. They transfuse the marrow into Steve's veins and the marrow knows just where to go and travels by itself to the bones.
Steve is feeling pretty good right now and is recuperating and getting prepared for the transplant. Thanks again for all the prayers.
Photo: this is Steve and his close friend, the I.V. tree. This buddy goes everywhere Steve goes when he is in the hospital and they have become quite close!
Thursday, January 7, 2010
Steve was feeling relatively great through most of December and we had a wonderful Christmas together. Steve started out the New Year with a hospital stay from Jan. 1-5 where he got the second "mega dose" of chemo. He did pretty well with it and is at home recuperating nicely.
Steve's doctor has informed him that even though none of his siblings were a bone marrow match to him, the national registry has 30 great matches. They have started the process of notifying 5 of those matches and will be choosing the best one. The bone marrow transplant will take place in the last half of February, as soon as the donor is ready.
In the meantime, Steve is waiting for his blood count numbers to build up again and he will go into the hospital for 5 days at the end of January for his third big blast of chemo. We have been very thankful that he has not had any of the radical side effects of this chemo so far. Steve is looking forward to a calm and restful next 3 weeks.
Photo: Steve with girlfriend Taryn, niece Eva (Romney & Christy's daughter) and Big Kangaroo
Wednesday, December 16, 2009
Steve went into the hospital for his first "mega blast" of super chemo from Dec. 4-8 and is doing well with a minimum of side effects. His mom and he had to learn to give him one shot per day in the thigh after getting home to help build up his white blood cell count over the next 3 weeks. Both were pretty timid at first, but now do it like a pro.
All of Steve's siblings were tested for being bone marrow donors for Steve over the last 2 weeks. They drew a blood sample from each; John had the record of 5 pokes to hit blood, and Lauren was a close 2nd with 3 pokes to get her sample. However, we just found out this morning that none of these willing siblings are a match for Steve (Lauren was a half-match, but that is not good enough.) So on to checking the national registry for the right match. That is about a one to two-month long process and they have to ask the willing people who are matches re-test for this current case. So now our prayers can be very specific...asking to find the right match.
Meanwhile Steve is pretty healthy and will enjoy his first Christmas home in two years. He will go back into the hospital January 1 for another super chemo blast of 5 days, with about 21 days at home for recuperating.
To all family and friends, enjoy the season of celebrating the birth of the Savior, to whom we all look for those blessings we need.
Monday, November 30, 2009
Steve was able to enjoy a great Thanksgiving over the weekend. The weather was beautiful, and he got out a little. It was his first home Thanksgiving since 2 years ago due to being in New York on his mission, and all he cared about was getting some stuffing! He also enjoyed some fun football games.
Steve was able to have his bone marrow test done last Tuesday, November 24, and just got the results back this afternoon. He has measurable cancer cells of .12%. This is a good improvement from what he had before, or .25%, but it is not the coveted 0% or full remission the doctors needed. Therefore, Steve will be going into the hospital at the end of this week for a 5 day stay where they hit him with some very heavy duty chemotherapy. Also, the doctors will be looking at a bone marrow transplant for Steve, and will fill us in later this week about that process.
We are again thankful for such great friends and family and for your love and support, faith & prayers. You all are a great strength to Steve.
Monday, November 16, 2009
Sunday, September 27, 2009
This last week was pretty exciting. Tuesday before last, Steve went in and got a flu vaccination to give him the most protection possible for the winter season, but it backfired on him. On Wednesday night, Steve caught a fever of about 100.8, and so was taken to the hospital for a quick checkup and some recreational blood tests. Turns out the fever abated practically the moment doctors started looking at him, so no harm done, except for Mom and Steve losing a lot of sleep.
Wednesday, September 9, 2009
Thursday, September 3, 2009
Sunday, August 23, 2009
Thursday, August 13, 2009
Friday, August 7, 2009
Tuesday, August 4, 2009
I went in and visited Steve and had quite a shock. His hair is gone! In talking with him on Monday, he mentioned that his hair would fall victim to the chemo after about 3 and a half weeks, but he decided to expedite the whole process and chop it off today. When I came in after work, he looked like an over-grown East High Freshman, who had a patchy five o’clock shadow. All in all, he still looks normal, and now we’re just counting down the days till the brows and lashes go their separate ways, too.
So here’s the update on Steve’s condition. Today he had another dose of chemo therapy. This consisted of injecting four needles into his inner thighs. It’s a type of chemo that can’t be taken intravenously, so Steve can expect at least four more out-patient visits of about the same experience. Steve was also given a blood transfusion to give some clean juice, and then got his pelt skinned -- Says he just wants to get used to it while he can.
Many of us were expecting him to be home today, but he was given a window until Wednesday, and the doctors want to stick to it. When Leukemia cells die, they leave behind high levels of Phosphates and creatinine. It’s nothing too big or serious, but the doctors want those levels low, so they’re just waiting for Steve to get down to where they want, and he’ll be home to chill in the morning.
Steve’s spirits are still way high, and we get to joke around with each other all the time. It’s great news that Steve is dealing with the Leukemia in the prime of his life, when his body is in the best condition. His neighbors are all under 3 years old, and it’s sad to hear them from the next room over trying to understand what’s going on. The nurses are well-trained for helping these families, but it appears they’re not accustomed to handling 23-year olds. They congratulate Steve on a good job done every time he goes to the bathroom and make quite a big deal. He’s such a good little patient.
Monday, August 3, 2009
We're trying to get him up to date on music, but he insists on his classic 80's music. Way to stay strong, Steve. I also think that he likes cruising around in his hospital gown.
I've noticed that Steve has a steady stream of visitors made up of family, friends, and friends of the family. I think that he cheers others up more than they cheer him up. Hopefully, Steve and my other family members who visit Steve on a daily basis will start posting updates here.
Sunday, August 2, 2009
Carolyn and I took Steve to the Primary Children’s Medical Center (PCMC) Friday morning. The preliminary diagnosis is Acute Lymphoblastic Leukemia (ALL) pre-B. Dr. Michael Pulsipher, who is in our ward, is the head of the PCMC Hematology/Oncology Department and the expert in the region, and only deals with the most critical cases, but he requested to supervise Steve’s care. Steve’s direct care provider is Dr. Wright who is over the more typical ALL cases. Dr. Wright informed us that she has been also caring for my brother’s grandson, Carson (who has the same condition). Steve will be in treatment for about two-and-a-half years. We are convinced we have Steve in the right place receiving the right care. What are the chances Steve would contract this disease and have in his ward the expert in the region and live this close to the best venue for its treatment? Steve is doing great and is in good spirits and good humor.
Friday Steve was tested and was in the O.R. for an hour-and-a-half receiving a port, having a spinal tap and a marrow sample. He spent Friday night at our home, but will be back in the PCMC through Tuesday. Steve received his first full chemotherapy treatment Saturday afternoon. He was groggy Friday night and Saturday morning from the pain medicine, but is doing much better Saturday. He is in good spirits. When we checked him in Saturday morning, he was really pleased that immediately upon his request the nurses brought him a portable, Wi-Fi connected laptop to use for e-mails, and all the room service food he wants whenever he wants it (which may turn out to be not all that often). Nevertheless, he thinks it is great. He is getting incredible attention at PCMC because the staff in his area only deal with 2 or 3 patients at a time while at the other venues they have 7 or 8 patients at a time.
So far, all the reports have been on the better side of what we hope for: 1) the white cell count is low and there is no infection, 2) there is no leukemia in his spinal fluid, and 3) he is so far in the category of “Pre B” ALL, which is the one with the high rate of survival. We won’t know until after two weeks of treatment whether he will be in one of the high risk categories, but so far the likelihood of that is low. We continue to hope and pray that his body will deal well with the treatment. He is quite restricted on visitors.
All of the 160 missionaries in Steve’s mission together with many members and some investigators who know Steve fasted for Steve last Tuesday. Like Steve, they are hoping he will get well and, if possible, be able to return for his last four months. Now that it is clear that his treatment will take a long time, however, Steve will no longer be on medical leave from his mission in anticipation of returning for his last four months; President McConkie, extended Steve an honorable release from his mission Saturday morning. He had a very fulfilling and rewarding 20 months. Some of Steve’s mission companions who have been home for a few months visited Steve Friday night at our house. That was really great for Steve too.
Steve is doing very well. He is energized by the prayers and support of family and friends. Having just completed a long hike on his mission, Steve finds himself at the base of another mountain starting another long hike to the top, but Steve loves a good hike. And we love Steve.
From Steve and his entire family, thanks for all of your faith, prayers and love.