Happy 31st Birthday and Yes, Phase I is Over!

Birds in the Parking Lot

Today is the the end of Phase I of our treatment. We are coming home for the weekend with plans to leave to Mexico City the following Monday. Nina and I packed up our place while Layla was getting treatment on Wednesday. Dr. Rosenberg's staff is allowing us to store few items in the office so we do not have to buy basic things again. We liked our place. It is only few minutes from the office. We will miss our lizard pets.

Layla and Olaf 

On to Phase II

Packing with Supervision

Moving Time

We received good news last week : One of Layla's Tumor markers has come down after two weeks of treatment by almost 50%, while the other two have risen slightly (which can be less accurate during the early phases of a new treatment).

Tumor markers are substances that are released in the blood by cancer cells. It is a blood test that allows us to monitor the growth or regression of Layla’s cancer. Although it is not accurate in many cancer patients, it has been fairly accurate in Layla’s case allowing us to change directions in treatment early on. We will continue to track two tumor markers while here: The CA 27.29 and the CA 125. We took a baseline of both markers when we started treatment: On 10/15/18, The CA 27.29 was 1511 and the CA 125 was 1767. We are also tracking the CA 15-3 and it’s at 821. All of these values need to be in the low 30’s to be considered in the normal range. On 10/29/18 and following two cycles of low dose chemotherapy and re-purposed drugs the CA 125 came down to 898 (50%) which is clearly an excellent sign but both CA 27.29 and CA 15-3 have gone up to 1636 and 968, and we will wait for a few more data points to draw any conclusions from these since they can be less reliable after starting a new treatment due to many reasons beyond our understanding, including something known as "tumor flare." We will be taking another blood sample today to re-run the tumor markers. 

We have all settled into a routine. I get to spend time with the girls, something I never got to do while they were growing up. The only difference now is they get to tell me what to do. I take on the logistics of running the house, the bookings and the planning. Nina is managing Layla's medical needs. She is actually now on short-term family leave so she is dedicating her time 100% to that. Layla's job is to be treated and try to keep her food down and not stress as stress is the worst enemy to the immune system.

Nina sorting Layla's pills

Highlights of our week included a nice care package from Layla's friends at CalPoly SLO with ketogenic cook books and a generous gift card to Whole Foods. Thank you! Layla also received a nice beading/meditation package from a childhood friend, Maya. It is extremely touching to see the support we are getting.

Whole Foods Care Package

Beading Package

Our PlumFund has exceeded our expectations and is already being put to good use! You have partnered with us on this journey so we are sharing with you the accounting . We thought it was important to know the cost of the treatment and where the PlumFund money is allocated to. We will update these numbers once a month.

As of 11/8/18 we have spent:

• $43,850 wire to Dr. Jason Williams for the Intra-Tumoral injection to take place on November 14 in Mexico City. This does not include the hospital costs. This cost however includes the drugs that are being used (OX40 and CpG) .
• $11,000 that covers Dr. Rosenberg fees. He bills at $5,500 biweekly. This amount covers the R&D costs, the administration fees and some of the low dose chemo drugs.  They have a complex operation here that takes a lot of nurses and staff.
• $7,031.72 in medicine and supplements. That covers the affinitor ($3K) that the insurance did not cover, the monthly Thymosin alpha 1(immune system enhancer), the copper chelator TM and the taurolidine infusions.
• $3,290 in tests and consultations prior to starting treatment.
• Our total expenditures from the fund as of today are $65,171.72.

Thank you again for all of your support and donations. We will be at Romeo's Chocolates in Long Beach, this Saturday, from 7-10pm for an evening with wine and chocolate in support of Layla's PlumFund!

Unfortunately, Restauration (the restaurant doing the pizza special) caught  fire early this morning. They will be closed for renovations and to assess the damage. We have them in our thoughts and are forever grateful for their help.

With lots of love,
Layla and her elves (Including Olaf)