Upcoming Believe for Brittany fundraiser:

On Saturday, November 17, 2012, T. Phillips in LaVerne, will be hosting a Believe for Brittany fundraiser.  The fundraiser will run from 4pm- 12 mid-night.  If a flyer is provided with your bill, 15% of your bill will be donated.  We will also be having a silent auction with lots of great items.  Thank you to all of our friends, family and community for your support!!!  We really appreciate it. We hope you will be able to join us for this special event.  Please feel free to invite any of your friends and family that may also be interested in attending.

November 2, 1012: Chemo ROUND 5

Part of Britt's Entourage



The "SUITE"



Britt w/ cousins Lori & Abby Lou



This morning we left bright and early to avoid any major traffic delays and believe it or not, we made it down there with time to spare.  We arrived a little early and were greeted by Raquel (on of our favorite nurses) who had a surprise waiting for us…A PRIVATE SUITE!!!  How AWESOME was that (it had a couch, TV, extra chairs)! It was so fabulous.  We could all be in there with Britt at the same time (Grandma Lian, Grandpa Sandy, Grammie, Ali, Ryan and Mom).  In addition Britt had a couple of other special visitors show up; cousins Lori and Abby Lou.  It was so nice all being able to rally around her today.  Her chemo treatment was increased to 1350mg but she handled it like a champ! At times we would still take turns getting out to walk around.



Britt w/ nurses- Gilbert & Raquel



Raquel's yummy cupcakes



Gilbert was Britt’s main nurse today and Raquel was in and out assisting. Yay, our two favorite nurses!!!  Nurse Raquel had made some super yummy pumpkin cupcakes that were FABULOUS!!!  Thank you Raquel, we really enjoyed them, a lot!







visiting w/ friends- Jordan & Dennis



Today was our every other month that we get to see our friends Dennis and Jordan.  They sat in the station right next to the suite so we could visit.  Having great friends to visit with and catch up with makes the time go by faster.  We look forward to seeing them every other month. The relationships we have been building there are very special (with our nurses and patients). We had to be reminded a few times that this wasn’t a “party”.  We do respect that others may not be feeling so well while they are going through their treatments and want to relax. We tried to keep it down.



Round 5 completed and we headed home. Please continue to pray, the power of prayer is amazing and we have seen great things happen because of it.

October 30, 2012: Doctor Visit

Today Grandma Lian, Grandpa Sandy, Grammie, Mom and Ali accompanied Britt to her doctor visit.  We came with our list of questions mostly around the stem cell transplant since no new tests has been run since our last visit (except blood and urine tests). We were hoping to be able to discuss further with both Dr. Furst and Dr. Kafaja but Dr. Furst was out of town this week.

Dr. Kafaja reassured us that our goal with the chemo is to soften the lungs and skin. We have already see improvement in her skin. She advised that ultimately what we would like to see is an increase in Britt’s lung function by December.  She also advised that although we should be prepared and be able to make a well informed decision (if needed), stem cell was a possible alternative.  We really hope to see enough of an increase in lung function to not have to go this route.

Not all questions could be answered at this time.  What we decided on was to continue with the next two Cytoxan treatments in November, rerun the CT scan and PFTs in early December, do one more Cytoxan treatment in late December and reassess the situation in early January.  At that time we will decide where we are going next.

Britt is starting to show signs of pitting in her finger tips.  Dr. Kafaja prescribed her Nitrobit (topical treatment for her fingers).  This will increase blood flow to the finger tips.  She is to do daily hand soaks, protect finger tips with Shea butter and treat with Nitrobit.  She is also prescribing her to do physical therapy 3 times a week on her hands (to strengthen them and work on straightening out the fingers).

She will be continuing on with all other medications.  Still working on decreasing the Prednisone by 1mg. every three weeks.  At this time, she is down to 3mg. daily. The first week of decreasing the dosage, results in stiff, sore joints. But Britt did advise that decreasing by 1 mg. each time was much more manageable then dropping 2.5 mg. each time. Blood pressure is to be monitored several times a week.

Ali had some of her own questions for Dr. Kafaja that she wanted to discuss by herself.  Dr. Kafaja was very accommodating and took some time to talk with her. Thank you Dr. Kafaja!!!  She is always so patient and very supportive when explaining details to Britt’s entourage and letting everyone ask questions.

Because Britt’s white cell count was still pretty high, Dr. Kafaja is going to increase her dosage to 1350mg. on Friday.  Dr. Kafaja advised that she is gauging the dose based on her decrease in white blood cell count. Currently it is at about 6.2, she would like to get it closer to 4 to ensure we are getting the most benefits out of the medication.

October 14, 2012: Attended a Patient Education Day seminar in Pasadena



Britt & Karen Gottesman



Today, Grammie, Grandma Lian and Mom accompanied Britt to a Scleroderma Patient Education Day out at the Pasadena Marriott. The speakers were Dr. Kathy Gruver- speaking on alternative medicine, Dr. Phil Clements- speaking on Kidney Disease and Dr. Daniel Furst- speaking on Scleroderma Research Updates. All were great.  It was great to see some of our friends from the support group; Bonnie, Camilla and Joy.  Karen Gottesman was also there. 

They had lots of great information.  Brittany was really interested in the information that Dr. Gruver had to offer on things to do in addition to medical treatments. Things such as positive affirmation, meditation, massage, Reiki and healthy eating habits.  Britt would like to take a trip up to Santa Barbara to visit Dr. Gruver for a Reiki session.  We are also looking further into Reiki down here, a little closer to home.

Referrals for Stem Cell Transplant:

After her last doctor appointment, we asked Dr. Kafaja to provide us with some info on stem cell transplant.  If this is something we may be considering in the future we wanted to start doing our research now.  Grammie has also reached out to cousin Kathi (Dr. Adamson- Pathologist) up in Seattle to see if she has any information. Ironically the information provided by both Dr. Adamson and Dr. Kafaja/Dr. Furst were to the same doctor up in Seattle, Dr. Georges.

It took a week or so before I could place the phone call to inquire on stem cell transplant. I had my list of questions and placed the call to the research nurse, Bernie.  I felt my heart racing as if I was getting ready for a job interview.  Bernie was very nice and provided a lot of information.  I will admit it was an overwhelming and very emotional call. 

She shared two types of transplants; one using your own cells and one requiring a donor.  Of course our first choice would be to use Britt’s own cells (less chance of rejection).  Unfortunately, it isn’t that easy.  Based on the last set of PFTs, Britt’s lungs are not in a healthy enough condition to be able to use her own cells.  We would need to see an increase in lung function from 39% to 45% to even consider it.  At this time it isn’t an option but Britt is a fighter and she will continue her next two rounds of chemo and then we will reassess.

Bernie encouraged us to talk further with Dr. Furst and Dr. Kafaja.  She provided some additional information on studies to read.  She advised us to schedule a consultation with Dr. Georges; come up, see the center and discuss further.

October 8, 2012: Chemo ROUND 4

Back down to UCLA for round 4 of chemo.  Britt was joined by Grammie, Grandma Lian, Grandpa Sandy, Ali, Ryan, mom and her second mom, Lorena (Mama Belan). This is the second round of the increased dose of Cytoxan (1250mg.). This month we went on a Monday, as Aunt Nikki and James got married last Saturday and Britt wanted to be feeling good for the wedding. 

The day is always jumpstarted with such positive energy. Everyone’s encouraging thoughts that come in at the beginning of her treatment and throughout the day are so uplifting.  I love to watch her smile as she receives everyone’s messages and pictures.  Thank you all for bringing smiles to her face while she is enduring this treatment.

During the day we all take turns sitting with her, one by one; cuddling, visiting, laughing, playing games, watching movies, etc.  This makes her treatment go by faster and she really enjoys the company.

Lunch, Starbucks and an introduction of Diddy Reise to Lorena.  She’s heard so much about these cookies, she had to try them and bring some home for Susan and Victor.

 

We left there after a long day.  Britt was tired but feeling pretty good. She took Tuesday to rest up and back to work on Wednesday.

October 3, 2012: FOLLOW US

Hello Everyone!!!  We have added a link below, "FOLLOW US" (left side) that you can enter your e-mail address and hit submit.  Everytime an update is made to the Believe for Brittany blog, you will be notified via e-mail. Please sign up to follow us and stay up to date.

Thank you Susan for helping us set up a "FOLLOW US" link, you are my blogging angel!!!

October 2, 2012: We will fight harder than ever.

7am this morning, we headed off to UCLA (Britt, Grandma, Grandpa, Dad and Mom) for PFTs and a follow up Doctor visit with Dr. Kafaja.  Feeling kind of excited as we would get immediate results today of the PFTs and see how the Chemo has been working.

SKIRRRRRT!!!!  We hit the most horrendous traffic.  It took us 3 ½ hrs. to get down there today.  We called the Pulmonary Functions Lab along the way and let them know we were going to be very late to our 9am appointment.  They said they would fit us in somewhere during the day.  Grandpa continued to keep it pushin' and get us there safely (thank you Grandpa for always driving).  At 10:30, WE ARRIVED and they got Britt right in.  They were awesome. The tests lasted about an hour; she had to repeat one of the tests 11 times (8 times with no medication and the last 3 after inhaling Albuterol). 

We grabbed a bite of lunch and made a much needed run over to Diddy Reise for some cookies.

When we got to Dr. Kafaja’s office; we were met in the hall by Joy, one of our friends from the support group.  During our meeting a few weeks ago, Joy mentioned that she had Scleroderma for many years and didn’t feel like she was getting the medical attention she needed from her Dr.  We highly recommended her to Dr. Kafaja.  She went and was very pleased.  She was beaming and felt like she was on the right path.  Yay, Joy!!!

So the big moment came…Dr. Kafaja went through the routine check up and questions.  Skin score stayed about the same.  The skin on the right side of her body appears to be doing really well.  The left side seems to have a tight band running down the side.  Britt shared that she feels tightness mostly in her legs when trying to cross them Indian style or bend them.  We got her signed up for the gym and she has started taking Yoga and will be able to do aqua therapy.  Hopefully this will help loosen up the connective tissues on the left side.

Britt feels she is ready to come off the prednisone.  She is going to drop 1 mg. every three weeks until she is off of it. She is going to increase the Evoxoc to twice a day to even out the moisture levels in her mouth and eyes throughout the day and night.

Grandma found some information on line about cold cap therapy and the benefits it has on reducing hair loss with Chemo.  We inquired on it.  Dr. Kafaja wasn’t familiar with it but was going to look into it.  Although Britt hasn’t had major hair loss, it has thinned out significantly.  Lucky for her, she has a lot of it.

We waited anxiously as she reviewed the results of the PFTs.  The results from the spirometry and lung volume tests showed little change in lung capacity and vital capacity.  What has changed is her ability to exchange oxygen. It has decreased from 54% to 39%. The numbers seemed very alarming to us.  3 months of chemo and her oxygen exchange decreases 15%.  I failed at being strong for my daughter today.  I broke down… as hard as I tried to hold back the tears, I couldn’t!  They just kept coming.  Britt has been so strong, so positive and doing EVERYTHING she is asked and to see results like this was heartbreaking. 

Dr. Kafaja and Dr. Furst advised that sometimes things get worse before they get better.  Dr. Furst said he expected this. Dr. Kafaja mentioned that 3 months may be too soon to see any benefits to the lungs from the chemo.   The two of them advised that we need to look at the overall results.  Britt has made many improvements over the last few months (skin score, reduced coughing, less trouble breathing), so something is working.  Her attitude remains positive and we are going to fight harder than ever.  We are going to continue with the Cytoxan, maybe extending beyond the original 6 treatments. Dr. Kafaja discussed considering more aggressive treatments (since this disease continues to move aggressively) down the road.  We discussed Stem Cell Transplants.  They have seen some very effective results from this and have changed so much.  They are now able to use your own stem cells taken from your bone marrow, reducing the chances of rejection.  Dr. Furst has some Doctors that he has worked with in Chicago, Seattle and Denver that are on the cutting edge of Stem Cell Transplants.  We are just going to start doing our homework now and reevaluate in a few months.  We will repeat the PFTs in December with the CT scan.  At that time, we can have further discussions around continued or new treatments.



Britt with Dr. Kafaja

As you start talking through things, more questions come up after you leave the Doctor’s office.  Uncle Josh asked if breathing exercises would assist in strengthening the lungs and keeping them soft. Great question!  We are asking Dr. Kafaja, if she is in favor of it.  If so, we will inquire on respiratory therapy.  Grammie has reached out to Cousin Kathi (Pathologist) to see what info she has on Stem Cell Transplants.   She advised that up there in Seattle, they are on the cutting edge.  We appreciate all the love and support that everyone has continued to give. We ask that you please continue to pray.

September 24, 2012: Believe For Brittany logo

I would like to share our new logo, painted by Erin Rose.  Erin is Britt’s cousin and is a FABULOUS artist.  Thank you Erin, it turned out BEAUTIFUL!!!

September 15, 2012: Attended our first support group meeting

We attended our first Scleroderma support group meeting at Verdugo Hills Hospital and were joined by our dear friend, Ruth. Karen Gottesman (Patient Services Director of the Scleroderma Foundation- Southern California Chapter) hosted a discussion on what’s new in Scleroderma and what patients should know.  We met several folks in which we have something in common with, living with Scleroderma. It was a wonderful experience, we were able to share and learn at this event in addition to meeting new friends.  Thank you Joan and Bonnie for inviting us and welcoming us into your group.

September 7, 2012: Chemo ROUND 3 (half way there)

Britt’s chest x-ray came back clear of infection so we headed down to UCLA for round 3 of chemo.  Mom, Ali, Grammie, Grandma Lian, Grandpa Sandy, Ryan and Kyle accompanied Britt to her appointment.    She has become a pro, knows the drill; weigh in, blood draw, urine test, wait.  If all looks good on her blood and urine tests they hook her up to an IV and it all starts; saline, anti-nausea, mezna, chemo, saline, mezna, saline. Tests came back good so they went ahead and increased her Cytoxan (chemo) dosage by 25%.

 Her main nurse today was Gilbert.  She says he does a really good job getting the cath into her arm with little pain.  Thank you Gilbert!!!  The nursing staff at the UCLA Infusion Center are all so friendly and helpful.  We just LOVE them!  So the day goes by quickly with lots of visitors, phone calls, text messages, words with friends games going back and forth and little projects that we bring to do.   

At one point she felt burning in her head and nose (due to the drip pushing too quickly); they slowed down the drip and finished the treatment. 

Today she had treatment with one of the friends that we made, Jordan.  He was accompanied by his father, Dennis and brother Gregg.  Very nice family.  Dennis even helped us with one of our projects we were working on tying bows.  Thank you Dennis!!!  We have met some very nice people here and made some new friends.

  She left there in good spirits but the increased dosage had more of an effect on her over the next few days.  She was very tired and just felt, “DIFFERENT” as she put it.  Not herself.  But by Tuesday, she was feeling much better; back in business and back to work.

August 28, 2012: Follow up Dr. Visit and more testing

Today was our first follow up visit with Dr. Kafaja, since Britt started chemo. She is also having a bacteria breath test today (she had to fast since 11pm last night).  Dr. Kafaja went through the normal questions and diagnostics (checking ears, nose mouth and throat, blood pressure, reflexes, listening to her heart, lungs and skin score testing).  When checking the tightness of her skin she had a look on her face that caught our eye.  She kept going back over certain sections of her body.  I asked her if she could feel a difference in her skin (because we had). She said she felt a significant difference in her skin and wanted to have Dr. Furst also compare the skin score test to the one done prior to starting chemo.  This brought tears of joy to my eyes because I thought I had felt a difference in her skin but you sometimes have to wonder, if you want something so bad that you convince yourself of seeing a change. Dr. Kafaja’s reassurance that her skin score had decreased form what appeared to be 31 to 18 was astonishing! Something is workingJ  We just hope her internal organs are responding to treatments as successfully as her skin.

Test results from Gastric emptying test showed a slight delay that will continue to be watched. Hot flashes are coming more frequently and just have to be dealt with at this time.  One interesting observation, since she has started having Lupron injections her Reynaud’s disease hasn’t been flaring up as often.  Britt has been experiencing increased dry eyes and dry mouth.  Dr. Kafaja is starting her on a new medication (Evoxac) to increase moisture production in the body (specifically saliva and tears).

When listening to her lungs Dr. Kafaja could hear  decreased breath sounds in her right lung.  She wasn’t sure if there could possibly be an infection or a change to one of the lungs.  She ordered a chest x-ray and advised that if it came back negative she would be upping the dose of her next chemo treatment as her white count was still high (9.2).

Her urine test show crystals in the urine which could be deposits from kidney stones.  Britt is being ordered to drink MORE water.  Which is always a good thing but she already feels like her eyeballs are floating.

Dr. Kafaja ordered Pulmonary Function Tests to be repeated in late September.  This will give us an indication of how her lungs are performing. The hope is that we will see an increase in performance, up from 50% (an indication that the chemo is working).  A CT scan of the lungs will be repeated in December.  This will allow us to see how the fibrosis in the lungs is changing (fingers crossed for the good).

The Doc. has decided to keep Britt on the decreased level (5mg.) of Prednisone for the time being and not take her off of it completely.  With each decrease in dosage, Britt experiences pain and stiffness for several days.  We will try this until her next follow up visit.

After leaving Dr. Kafaja’s office we headed over to the Medical Center for the bacteria breath test and chest x-ray.  Britt had to drink about a ½ cup of a sugar water solution and blow into a tube every 15 minutes.  This test was performed to ensure that her digestive system is not slowing down.  If bad bacteria are present, it would indicate that she has a back up in her small intestines.

In between this testing we ran downstairs to have the chest x-ray done and back up to complete the bacteria breath test.  We are getting very good at multitasking in the medical center.

Lunch at In-N-Out was much enjoyed.  No Ditty Reise run today as we were trying to get a head start on the traffic.

As long as there is no infection in Britt’s chest, her next round of chemo is scheduled for September 7^th. Thank you to all of our friends, family and medical team for all of your continued support, thoughts and prayers.  We really appreciate it. 

August 23-26, 2012: VEGAS BABY!!!!

15 of us headed to Las Vegas to celebrate Britt’s 21^st birthday, Mitch’s 27^th birthday and Jilly’s 31^st birthday.  

Our Vegas cousins even came down to celebrate and join the party.  We had TONS of fun!!! Pool during the day to stay cool and out on the Strip at night (I don’t think the temperature changed much between the two). 

We are trying to keep life as normal as possible.  Vegas was where Britt wanted to go to experience being 21!  Dancing on the bar at Coyote Ugly, toasting a special occasion with those close to her and dropping a few bucks in the slots.  She had fun and so did we!

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.