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.