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!