Robin's Journey
4/15/2008 Entry By:  Lindsay Lark Rozier Subject:  Robin's Obituary

On April 11 our remarkable little Robin closed her big blue eyes to this world and flew home into the open arms of her Heavenly Father.

Born April 4, 1977 in Fresno, Robin spent the first 18 years of her life in Clovis, where she graduated from Buchanan High as the Valedictorian of her class in 1995. She went on to attend BYU in Provo, UT where she earned her bachelors degree in Psychology with a minor in Floral Design. During these years she also met her husband, Jason Groff, whom she married on December 18, 1997. She and her husband lived in San Francisco for many years where she became a sought-after floral designer and pursued her talent for the arts through her vocation. She delighted in creating both physical and spiritual beauty in the lives of all she encountered. She truly believed to serve her fellowman was to serve her God. During these years the couple made a number of lifelong friends and shared some of their happiest times. Robin and Jason also lived in Mission Viejo, Roseville, and Lincoln, CA. On December 11, 2003 Robin achieved what she considered her greatest accomplishment, giving birth to Hailey Noel Groff. Robin’s love and devotion to motherhood and Hailey made her an example to all of those around her. Although brief, her life touched hearts around the world and her legacy of service, compassion, and a love for life will not soon be forgotten.

Robin is survived by her husband, Jason Groff of Lincoln and her beloved daughter Hailey Noel. She is also survived by her parents Wendy and Richard Rozier of Alpine, UT and her sisters: Natalie of Grover Beach; Lindsay of Salt Lake City; Whitney Baker (Bret) of Alameda; and Raven of Fresno; as well as her husband’s loving family including Carol Groff of Farmington, UT; Aaron, Julie, and Camden Groff of Reno; Leslie and Jimmy Shergill of Lincoln; Nathan and Amy Groff of Logan, UT; Jordan Groff of Farmington, UT, and George and Sherri Groff of Tampa, FL. She is also survived by her many loving aunts, uncles, grandparents, cousins and dear friends. A memorial service will be held at 12:00 p.m., Friday, April 18 at the LDS Fresno North Stake Center located at 220 N Peach Avenue, Clovis. Arrangements are being made by Palm Memorial Chapel. Remembrances may be made to the Leukemia and Lymphoma Society or to a trust fund that will be established for Hailey Groff at the Bank of America, c/o Robin Shepard, 1965 Fairmont, Clovis, CA 93611.
4/14/2008 Entry By:  Lindsay Rozier Subject:  Funeral Arrangements

Thank you so much for the outpouring of love and support. Robin's funeral will be held on Friday, April 18 at The Church of Jesus Christ of Latter-Day Saints (North Stake Center- 220 N. Peach Ave. Clovis, CA 93612). The viewing will be at 10:30 AM with the funeral to follow at 12:00.

 

 
4/11/2008 Entry By:  Lindsay Lark Rozier (Robin's sister) Subject:  Robin Rozier Groff April 4th, 1977- April 11th, 2008

Family and Friends- after a courageous battle, Robin went home to live with our Heavenly Father tonight. None of us ever wanted this day to come, but we find peace knowing that she is free of this terrible illness and surrounded by family and friends who have preceded her in death. Thank you so much for all of the love, prayers, thoughts, cards, emails, etc. over the past 2 1/2 years that have meant so much to Robin, Jason, Hailey, and our extended family. I will update the website as funeral arrangements are finalized.

 

 
3/22/2008 Entry By:  Robin Groff Subject:  Out of the Hospital

Today I got out of the hospital after a long stay. I've been having problems with my eyesight due to low platelets and hemmoraging behind my eyes. I'm praying that my eyesight will improve. Thank you so much for the prayers that I requested, they mean so much. The nausea is slowly improving- hopefully that means I'll keep my Easter dinner down. I'm just happy to be home with my family for Easter. Love, Robin

 

 
3/2/2008 Entry By:  robin groff Subject:  jealousy

I am requesting prayers on my behalf that my nausea and vomiting will subside and that I may be able to gain some weight. I've been steadily losing weight for about 2 1/2 months now and am getting really skinny. The doctor wants me to continue trying to eat regular food, but I am having a really tough time. Today I spent most the whole day in the Emergency getting potassium, magnesium, and platlets. I started to black out this morning and knew something had to be off, so we checked in and sure enough my electrolytes were way out of whack from throwing up and not being able to keep down my supplements. As I laid there it was diffucult to see women all dolled up in their 60s with their 80 some odd father or mother shuffling after them in their robe and bald head. I couldn't help but to think that I should be doing this at their age not my age. This just isn't fair. To pass time I was watching a marathon run on TLC of Little People Big World and there I was again, jealous of the mom who is raising here four kids completely healthy. Sure there is alot of bickering and wildness, but she had the energy to take them to the grand canyon, and go paint ball gunning with them, and make fresh blackberry jam for them. My life included those things until cancer selfishly took it away. I don't understand why we can shoot a spaceship that will land on the moon, yet we can't cure a disease that will effect 1 in 3 people in their lifetime? I just don't understand.

 

 
2/17/2008 Entry By:  Robin Groff Subject:  Long Days, Long Nights

I did in fact enter the hospital here at MD Anderson on Feb. the 4th, but it was because of a 103 degree fever that had shot up. When my immune system is so low, it will have no response to infections except for a fever, so that is what they tell us to keep our eyes on. I checked into the emergency and waited from about 7am to 10 pm for a hospital bed (this place is really overcrowded). The doctors then admnisitered a cocktail of higher power antibiotics and with some changing around in the medicine category, my fevers have finally subsided on the 13th of Feb. So, I was anxious to start my second round of the new clinical drug that I am on, but now I seem to have high liver counts. And when your bilirubin gets too high or they see probelms with the liver, they are of course, hesistant to start a new round of chemo. It is likely that all of the high powered antibiotics that I've been on has effected my liver, so the doctors want to wait before they start my new round.

I got my results from my last round of chemo. and the clinical drug took my cancer blasts in my marrow from 98% to 30%, and reduced the blasts in my blood to nearly 0. I am still transfusion dependent, but the leukemia went down quite a bit, so they are promised by that. The trick is to stay away from infections and fevers! Grammy has been here helping me take care of Hailey and she was so much fun to have. Hailey adores her and it is great to see them play together.

For Valentine's Day, Hailey brought cupcakes to the hospital to frost and decorate and we also made all kinds of catepillar, dinasour, beetle, worm, you name it Valentines out of construction paper and glue to give out. Hailey has become a favorite amongst the nurses, winning them over with her overly sprinkled cupcake and funny valentine. She keeps herself quite busy over hours of time in my little room and I feel so fortunate that she is the type of kid who can focus for hours on a project. It would sure be hard for her to come see me for more than 10 minutes if she wanted to shoot out the door and run around every minute. Although, than again, this is all she has known. To her, the hospital is an extension of home and the strange things that go on here are all part of the show.
2/3/2008 Entry By:  Robin Subject:  Clinical Trial

Happy Birthday Kristy! Also, whomever sent Hailey the Disney stuff, thank you very much. She loved it. It is fun to see her eyes light up when she gets a package. Also, thank you Kym for the touching letter. Tonight I just recieved platelets in preparation for a bone marrow biopsy tomorrow. I'm going to be sedated so I don't have any worries. I've done enough of those darn bone marrow biopsys awake, I now demand that I be sedated. Plus, the drug they give you to put you under works pretty well. You wake up feeling like you got the worlds greatest nap, not groggy or nauseated at all. You almost feel as if you had a great day at the spa. Hmmm, life must be pretty pathetic if I'm looking forward to going under for a biopsy. This biopsy will tell us how well this new clinical trial that I am on is working. I've been out of the hospital for about two in and half weeks now. Unfortunately, I have to check back in for my next treatment tomorrow or the next day. My new clinical trial is a chemo. that is a five day continuous drip, so I have to be connected to the machine for five days straight. Hailey, Jason and I went to supercuts and got my head shaved yesterday. It started to fall out again, and when it does that, the hair goes every - your pillow case, your clothes, you mouth - yuck. So, I walked into supercuts and told them that I wanted "The Britney".

 

 
Friday Jan. 13, 2008 Entry By:  Robin Groff Subject:  MD Anderson

I've been in the hospital at MD Anderson for about three weeks now and am getting pretty darn sick and tired of my 8 by 10 cubicle of a room. I think that I've read every magazine printed for the month of January. I know way too much about Britney Spears than I care to, and I'm running out of things to do with Hailey. I was first admitted because I started to have extreme bone pain. At first they couldn't get it under control and I felt as if I was laboring with a baby and dialulated to a 10. They threw me on a bunch of Dialudid, but I started to have very high fevers and became unconcious. Fortunately, after one scary night the fevers came down and I began to be aware of my surroundings once more. They performed a cat scan and diagnosed me with fungal pneumonia. Apparently, people with bad immune systems can pick it up if they are not wearing a mask and they simply go outside. It is in the plant spores that fly through the air. Most people's immune systems are tough enough to fight off any fungal spores, but since mine is so comprimised I picked it up. Since then they have put me on many different antibiotics, antifungal medications, and antivirals. My fevers stopped, so they were going to let me go home and then I started vomiting too much and my fevers mysteriously reappeared, so now I am stuck in here longer. This time they think that it is either a secondary infection that I picked up from being in the hospital or it is my leukemia. What is so frustrating about the situation is that they cannot start me on the next clinical trial until my fevers go away, so in the mean time, my leukemia is just growing madly. It is very nerve wrecking. We did have a wonderful Christmas though. I prayed and prayed that this year I would at least get Christmas day out of the hospital and I did! It was so much fun to watch Hailey open her gifts this year since she is four and very into the whole Santa and reindeers thing. She baked cookies with my sister for Santa and sat out carrots for Rudolph and was very pleased in the morning when they were all gone. Another big event happened that I wanted to write about and that is that I was able to talk to my donor on the phone! He contacted me for my information but I hadn't heard anything from him. When I got his information, I instantly emailed him and I gave him my phone number just in case he ever wanted to call me. One evening, out of the blue, I got a call from Missouri (that is where he is from) and it was such a wonderful surprise. I was very taken a back and emotional because what do you say to somebody who has saved your life? Even though my leukemia is back, I recognize that fact that I would have been dead a year and a half ago if he hadn't stepped up to the plate. My donor ended up being an amazing man. He is a fireman and has a wife and three kids. I kept telling him how thankful I was for not just donating once, but two times, and he kept brushing it off like it was no big deal. He is a very religious man and told me about how he just felt it was the right thing to do and that God would hold him accountable one day for his choices and he just made the right choice. He said that he couldn't imagine that somebody would sign up on the registry and then back out if they were called upon. I wasn't surprised at all that this man is so full of integrity and valiance. Apparently, he had signed up years ago when a co-worker of his had a child that had leukemia. The fire station learned about the bone marrow registry and set up a drive to get donors. It is funny how one life touches another and we sometimes are completely unaware of it. This is why one of my favorite all time movies is "It's a Wonderful Life".

I've been losing a lot of weight and am beginning to get concerned about it. I've probably lost about 28 pounds since my sister's wedding in August. I am ashamed at myself for ever wishing that I was just 5 pounds thinner or wishing I could fit into those size 26 designer jeans back when I was healthy. I remember being so frustrated with myself after having Hailey because I thought that I just had 65 pounds worth of baby and when she came out, only about 15 of those pounds dropped off. I thought I was so ugly with my back roll and my new big hips. Our culture is so body and diet obsessed, it seems like every other commercial is for Jenny Craig or Weight Watchers. As women in this country we are particularly hard on ourselves and it makes me sad especially now that I realize how I took my appetite for food for granted. I look at my protruding hips and my ribs just starting to show through and there isn't anything sexy about it. My legs are like twigs, and I'd probably look good in a mini skirt, but I would trade that for an extra 20 pounds and no vomiting or wasting of muscle and fat.

Hailey continues to be the bright spot in our lives. She now says that it is going to take a long time for mom to get better, but she will. She explained to me the other day that "the kemia" was going to be gone when she was 10. "I have to be 5,6,7,8,9, and then 10," she said, "but when I'm 10 you'll be better." It is so funny the things that kids come up with.
12/19/2007 Entry By:  Lindsay Rozier Subject:  Update from Houston

Unfortunately we haven't worked out the details with Robin's internet, so you'll have to wait a little longer for a more personal update- until then, I'll have to do. Robin asked that I give a quick update on the latest and I'll do the best with my small understanding. In the last update, we mentioned that the clinical trial Robin was on seemed to be working. We were all so excited, but as in the past, we took the good news with a grain of salt. Just as the doctors warned, Robin seems to have grown resistent to the new drug. Her blast count is back up to somewhere around 75%. The good news is that it stayed at 75% for the last week, so we're not really sure what that means. Robin will be meeting with her team of doctors on Friday to discuss what might be happening and other options for continuing treatment. This whole scenario has become far too familiar.

In the meantime, Robin is trying to soak up being out of the hospital during the holiday season. When she feels good enough, we try to get out of the apartment and explore Houston. Jason was here last weekend and we celebrated his birthday as well as Hailey's 4th birthday. We also had a chance to visit the Houston Zoo and go bowling- two of Hailey's favorite activities. She is in full holiday anticipation mode and we all hope and pray that Robin will be able to stay out of the hospital for Christmas (she's been hospitalized for the last 2 years) to see Hailey when she wakes up. Hailey says mom's "kemia" is going to get better and we're all counting on it.

 
12/11/2007 Entry By:  Lindsay Rozier (Robin's sister) Subject:  Overdue Update

I know many of you have been anxiously awaiting an update on Robin- my apologies for the delay. Her internet connection in Houston is spotty and doesn't always work at the same time that she feels up to it, thus the lack of communication. My dad wrote a few email updates (one from Thanksgiving and another earlier today) that I thought would give everone a good idea of what is going on. Thank you again for the continued love and support- you'll never know how far reaching your positive thoughts and prayers have been.

Update 1- Thanksgiving: Robin is feeling good today and looks like a million bucks, it is hard to believe she is as sick as she is. She had dinner with us today in the hotel restaurant. MD Anderson is a beautiful medical center and the food throughout is fabulous. Unfortunately the caregivers are not so great. Most are overworked, stressed out, and rude...and those are the social workers. The plan was for her to be treated as an outpatient here, but she has been an inpatient for the past 2 weeks because of fevers that spike daily. So far they have been unable to find the cause. Hopefully they will resolve on their own and her blast count will continue to drop as it has been with the experimental drug therapy she is on. It has been determined that she has a genetic mutation known as FLT-3, which they believe about a third of all AML patients have. Patients with this condition usually relapse within 3 months of a bone marrow transplant, which is what she has done twice. The hope is that they can buy some time with the experimental therapy until a more permanent solution can be found. A few short years ago patients with CML had the same poor prognosis, but thanks to a new drug called Gleevec many of them are now leading normal lives in complete remission.

Update 2:Here's the latest. Carol Groff, bless her heart, flew to LA last weekend, loaded the Ford Escape parked there at the condo to the gills and drove it to Houston, only stopping to sleep at a rest stop along the way. She did the trip in less that 48 hours. Jason flew to LA this past weekend, loaded the entire Monrovia apt. in a U-Haul and drove the contents to Sacramento where he deposited them in a storage unit with the rest of their stuff. Carol has been with Robin and Hailey the past week. Wendy flew out yesterday. Last night, new friends the Pettey's, drove the crew around residential areas of Houston to look at Christmas lights. Hailey is beside herself with glee! Both Grammy Carol and Chickee (Wendy's grandma name) are with her, she has a new apartment in Houston, it's her birthday week, Christmas time, her dad is coming Wed., and her mom has been home for 2 weeks and feeling pretty good. If Poppa Richard had gone to Houston too that may have thrown her into cardiac arrest, so I demured :) Robin's blast counts are down (good) and neutraphil counts are up (also good, it means she has a partially functioning immune system and is feeling much better.) The experimental FLT-3 inhibitor therapy is working, although she has been warned that within weeks or months the leukemia is likely to become resistant and will no longer respond. At that point they may have another buy-more-time treatment to give her. Her lead oncologist in Houston is Dr. Jorge Cortez, a native Argentine. If you do a google search of FLT-3 inhibitors you will soon realize that the two most prominent FLT-3 Hematologists in the world are Cortez and a guy at Johns Hopkins named Donald Small. They are working together to enroll patients in their studies. It is becoming evident that the FLT-3 mutation is a good predictor that a patient will fail a bone marrow transplant. This was not widely know as recently as 2 years ago when we started this journey. It is a miracle that Robin is still alive. Our hearts are full and we are grateful for each day. Thank you for your continued prayers and varied expressions of support! Richard and Wendy
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