August 10, 2012: Chemo- ROUND 2

Today Mom, Ali, Grammie, Grandma Lian, Grandpa Sandy, Jordan and our good friend Susan accompanied Britt to her second round of chemo.  Grandma and Grandpa are still on vacation but came back up for the day to drive us into UCLA and support Britt. Since we know what to expect, we all feel a little more at ease about the day.  Again rotating in shifts, so everyone has time with Britt.  Grandpa Jim, showed up for a surprise visit. Britt loves having so many visitors throughout the day, makes her treatment go by faster.  Lunch request today was Flame Broiler. Another 8 ½ hrs of treatment but it went very smoothly. Britt left, with all smiles.  Her nurses love her and love how she brings smiles and laughter with her. Britt appreciates all the love and support she is given.  She has met several patients obtaining treatments for all sorts of diseases and feels very blessed.

 We made our traditional run to Ditty Reise to pick up some super    yummy cookies for the ride home  This has become a guilty habit but not something we are going to quit (he, he, he).  Look at all those cookies baked fresh, daily- all day long!!!  Everyone has their favorite flavor.  We are so lucky they are in walking distance of the UCLA Medical Center.

 HOT FLASHES started earlier this week and continue to come, this must be the start of the Lupron kicking in.  Second Lupron shot, next week. Hopefully the heatwave we are experiencing in So. Cal eases up.

July 27- 29, 2012:Scleroderma Conference in TX

  My Mom, Lian and I attended the National Scleroderma Conference, it was FABULOUS!!!  We stayed at the Gaylord Texan Resort in Grapevine, TX.  What a beautiful place!!! Full of lots of informative speakers and inspirational stories.  We met so many great people (Heather, Cindy, Barbara, Kris and many more), everyone was so positive.  Dr. Furst and His Wife, Elaine Furst, RN were both speakers at the conference.   We left there reassured that we are on the right track, made new friends and gained knowledge to new things on the horizon. 

We also learned that because this disease is not well known, we want to get people informed; including our communities, insurance companies and legislature.  Getting the word out there will only help us in future research, funding and finding a cure for SCLERODERMA.  I have attached a link to the Scleroderma Foundation; please click on it to learn more about this disease and what the Foundation is doing.  The website is getting a new look and will be unveiled in August.

 

Thank you Mom and Lian for all of your continued support. I appreciate the opportunity to have been able to attend this conference together, we had a great time.

 

August 4- 5, 2012: Happy Birthday Baby

Today Britt; along with several family members, friends and co-workers celebrated her 21^st. birthday.  She actually turns 21 tomorrow and has a busy birthday weekend planned.  She and Ali returned from vacation today, just in time to get ready for her party.  We had a wonderful time with yummy food, signature drinks (Pink Brittini) and personalized bottles of wine for our gusts to take home in memory of this BIG DAY!!! 

Sunday, the four of us went to breakfast. Later that night, Britt and some of her fiends and family went to the Toby Keith bar to continue the celebration. The good times continued. She was able to enjoy a cocktail but was a little bummed as the waitress didn't even card her.

Later this month several of us are going to Las Vegas to celebrate Britt’s, Jilly’s and Mitch’s birthdays. More fun to come. We are trying to keep Britt’s life as normal as possible  Having fun and making memories is a big part of this.

July 27, 2012: More blood work and new issues

Blood work will need to be repeated with every Chemo treatment and again 2 weeks later to ensure her counts are not out of whack.  We are out of town, on vacation in San Diego, so Britt will be taking the train up to have them run.  Due to her immune system being compromised, she is boarding with a mask and plenty of antibacterial wipes.  She said the mask seemed to freak people out but one man finally sat by her and asked her if she was “sick”, she replied, “No, I am trying not to get sick”.

Britt has had some issues with breathing this week.  When enduring too much activity, she is finding herself winded and wheezing so her Dr. has prescribed her an inhaler.

My mom, Lian and I left for the Scleroderma Conference in TX.  We are looking forward to learning more about this little know disease.

July 18, 2012: Here come the HORMONES!!!

Today Britt began Lupron injections.  Grandma Lian will be giving them to her monthly. Side effects may mimic menopause; hot flashes, moodiness, etc. One day at a time, that is all we can do.

July 13, 2012: Chemo- ROUND 1

          Brittany and team (Mom, Ali, Grandma Lian,Grandpa Sandy, Grammie and Jordan) are off to UCLA Infusion Center for Britt’s first round of Chemo.  Expected to take about 8-9 hrs.  We are prepared to be there all day; bringing snacks, reading material, movies and activities.  Since Britt can only have one visitor in with her at a time, we took turns rotating in; keeping her entertained and fed.  She requested In-n-Out for lunch and luckily, there was one right down the street.  We headed over and Uncle John showed up for a surprise visit, keeping her smiling and laughing until we got back with lunch.

Her nurse, Raquel, was FABULOUS!!!  She took exceptional care of Britt explaining each step of the way, what was going to happen.

She finished her infusion at about 5:30pm and did SUPER!  We headed home in traffic but with Grandpa driving we again got home safe and sound.


She came home to some beautiful roses that Ryan dropped off for her before he went out of town.

Britt did great, Sunday she began feeling nauseous but the Ativan and Zofran took care of that real quick.  A bit more fatigued, but other than that she was back in business.

July 17, 2012: More testing

Today we are off to have a gastric emptying test run to see if the Scleroderma has affected Britt’s gastro system.  Ali, Grandma, Grandpa and I wait as Britt eats a turkey sandwich and apple juice filled with radio active dye.  They monitor for two hrs. to see how the food travels.

We still have to schedule one more test, also used to determine how the gastro system may be affected. This will need to be done at a later time as both tests require fasting.

June 19, 2012: …and the results are in

Britt, Mom, Dad, Ali, Grandma Lian, Grandpa Sandy, Grammie & Ryan went back into UCLA to meet with Dr. Kafaja for test results and treatment options. The heart looks GOOD!  The Scleroderma has involved the lungs.  The CT scan shows Fibrosis in the base and tops of each lung with inflammation throughout.  A few nodules appeared and will continue to be watched.  The PFTs (Pulmonary Function Tests) revealed that her lungs are only working at about 50% of capacity. 

Because there is lung involvement, their first concern is to treat the fibrosis of the lungs.  Two medications have shown positive affects on softening up the fibrosis. Dr. Kafaja and Dr. Furst advised on three treatment options; CellCept (an immunosuppressant), Cytoxan infusion (a form of Chemotherapy) or a clinical trial that compared both CellCept and Cytoxan in pill formula.  The downside of the clinical trial is that it is a blind trial.  Meaning you or your Dr. wouldn’t know which drug you were on. The clinical trial runs for two years.  Those on Drug A, would be on it for the full two years, those on drug B would use it for one year and a placebo for one year.  Knowing that the clinical trials help researchers learn more about the disease and the drug seemed like reason to move in that direction.  But because Britt’s disease was so aggressive and moving so rapidly, we wanted to fight back with the most aggressive drug offered. This would be the Cytoxan infusion.

Being that this drug also has a lot of potential long term side effects, it really made it tough.  Long term affects include potential bladder cancer and infertility. Dr. Kafaja advised that we would take every precaution to try and protect her form these other harsh side effects.  Giving her Mesna with her Chemo to try and protect her bladder and Lupron hormone injections to put her body into a temporary menopause to protect her eggs for future pregnancies.

June 15, 2012: UCLA for additional testing

Britt, Grandma, Grandpa and I were off to UCLA for additional testing.  We had a full day scheduled with back to back appointments.  Lucky for us; all the buildings are close, so we can run back and forth and everyone was “Running on Time”.  Britt started with the CT scan of her lungs, then we ran off to do the Echocardiogram of her heart, quick bite to eat for lunch, over to do Pulmonary Functions Test and off to the lab for a series of Antibodies blood tests! WHEW, what a day!  All techs said she did a great Job (that’s our girl)!  The Echo Tech said her heart looked good- THANK YOU GOD!

Britt was a real trooper and so were Grandma and Grandpa right along side of her with a cooler of water and snacks to keep her energized and hydrated.  Not a moment went by where she wasn’t smiling and laughing.  She even got to try on a new type of gown (not one she would have picked out herself but she modeled it for us anyway)! Maybe with the right accessories, she could make it work!  I am so thankful for her positive outlook on life.

Thank you for all the love, support, thoughts and prayers.  We are so blessed to have such a great circle of family and friends.  Please keep praying.

May 29, 2012: Our first visit to UCLA

Britt wrapped in her new
blanket made by Mz. Mona.

Attending her initial visit to UCLA along with Britt was Mom, Dad, Grandma Lian, Grandpa Sandy and Grammie. For the initial physical evaluation with Dr. Kafaja; Britt, mom and Grandma went in with the Dr. Dad, Grammie and Grandpa Sandy waited in the waiting room.  They met with Dr. Furst who advised that he and Dr. Kafaja are a team and would be consulting on every case and making determinations together. He then introduced them to Karen Gottesman, author of, “The First Year: Scleroderma: An Essential Guide for the Newly Diagnosed”, which we happen to be reading. Karen was fabulous about advising them on the Scleroderma Foundation and sharing info on the upcoming Scleroderma convention, being held in TX. She is also a Scleroderma patient and was able to ease their minds in reassuring that there is life after being diagnosed with Scleroderma.

UCLA is so supportive that they offered to move us to a conference room so all could hear the prognosis.  They believe in family support and this was really appreciated. They kindly named us “Brittany’s Entourage”.

After reviewing her blood work and performing a full exam, Dr. Furst and Dr. Kafaja confirmed Brittany’s diagnosis as Diffused Systemic Scleroderma. Dr. Kafaja heard crackling in her  lower lungs so they ordered additional tests (CT scan of her lungs, an echocardiogram of her heart, a pulmonary function test, and lots more blood work) to determine if the disease had spread internally. Once they have a clearer picture, treatments will be determined.  They have prescribed her a few things to treat some of the other symptoms she is experiencing.  Dexilant for the heartburn/ GURD and Prednisone for the joint pain and swelling.

  

We left this visit feeling very positive and feel like we are in the right place. We also feel very blessed to know that Britt was diagnosed so quickly.  Many patients are not diagnosed for several years, by this time more damage may have already been done.

Grandpa Sandy has been named, “Chauffer of the Year”.  He is so patient driving in all that traffic and getting us to and from our destination safe and sound. Thank you Grandpa, we really appreciate it.

May 21, 2012:Referred to a Rheumatologist

Britt and I went into Dr. Soleimani’s office not sure what to prepare ourselves for.  After looking her over and asking her many questions, he responded with, “I AM SO SORRY, SHE IS SO YOUNG”.  What did this mean, what was he saying?  As he hugged both of us, fear started to take over.  No explanation, no details, just a BIG HUG from a DR. we had met for the first time.  As much as I appreciated his compassion, we still didn’t know what was happening.  He brought us some information and said, “She has a majority of the symptoms for an autoimmune disease called, Scleroderma. Here is the name of a Rheumatologist out at UCLA that specializes in this disease.  Please call him immediately and get in.  I am so sorry.”  Leaving there feeling so overwhelmed, we called my husband, mom and mother-in-law (who is an RN) and father-in-law to get together and discuss what was happening to Britt. The internet can be so full of information but can also be a scary place to look when you are first advised of a potential disease. My mom and mother-in law started ordering books and resources to better inform us. An appointment was scheduled with Dr. Kafaja and Dr. Furst at UCLA.

May 16, 2012: Initial Dr. visit.

Britt went to her on campus Dr. as she has begun acquiring new illnesses in addition to her already diagnosed Reynaud’s Disease and cough.  Hand swelling wasn’t going down; her mouth became dry, persistent heartburn and joint pain.  Her Dr. Referred her immediately to a Rheumatologist in Arcadia, Dr. Soleimani.