Another Week Down...TGIF

A touch of Fall.

Thursday is the end of our week 2 treatment. Our weekly treatment is the same. It consists of two long days of infusing Taurolidine (antimicrobial agent) over 5-6 hours, A day of high-dose Vitamin C infusions and a day of low-dose chemotherapy with Hyperbaric Oxygen (HBOT) sessions.

Layla getting low dose chemotherapy on Thursday.

One of three chemo drugs infused. This is Adryomycin dubbed as the red devil (luckily she only gets 10% of the dose).

Our main challenge has been keeping Layla's nausea under control. Our day started at 10:30 at the clinic with a slow long infusion of Taurolidine . She tolerated it very well with the anti nausea medicine. Our day ended around 5:00pm. She had lots of energy at the end of the day and managed to make dinner and experiment with trying out some ketogenic pumpkin pancakes.

Layla Making Dinner on Wednesday.

Olaf helping out with Dinner.

Our morning routine consists of sorting out Layla's pills for the day (medicine and supplements). She averages about 60 a day. We use a spreadsheet that Nina put together to do so.

Stash of Pill Bottles.

Olaf assisting with pill sorting.

Sorting out the Pills in the Morning.

Final Product.

The delivery person is very busy at our little Airbnb rental. Among the many boxes we received yesterday (lots of medicine, amazon orders, etc..) was a care packaged from my friend Tanya, packed with my comfort food, favorite coffee brand, and an Olaf keychain so he does not miss out on any of our outings.

Olaf on a Key Chain.

Apricot jam and cheese. Yum!

Another highlight of the week was finally getting all the medications delivered. The ordeal of getting cancer medicine approved through the insurance and the pharmacies handling the request is beyond ridiculous. It takes 3 to 4 weeks to get the medicine once the oncologist requests it. There is absolutely no sense of urgency on the medical team's part. Afinitor, a targeted therapy, was denied by the insurance. It is 15K for 30 pills in the US. Through a team of dedicated friends of friends, we were able to get it from Lebanon for a little over 3K. It is supposed to work in synergy with the low dose chemo. We were on our way to the clinic when we saw the UPS truck. We dropped Layla off at the clinic since she starts out with HBOT and returned to pick up the medicine so she can take it ahead of chemo.

On the way back.

Afinitor is here!

We can't believe we're 3/4 of the way to our PlumFund goal! It's truly amazing how supportive everyone has been. Stephanie Rivera just wrote an article in the Long Beach Post about Layla which was truly touching. The love from everyone has given us a renewed energy to keep on going and has slowly lifted weight from our shoulders. Thank you all for sharing our journey.

With lots of love,

Layla, Nina, Samara and Olaf

Location: Highland Beach, FL 33487, USA

Comments

  1. UnknownOctober 27, 2018 at 11:47 AM

    Praying for you Layla! Be strong,💖😸 and my Simba (cat) says hi, and send his love😻

    ReplyDelete
  2. R. AndersonOctober 27, 2018 at 11:59 AM

    A good friend of mine who had a heart transplant did what you are doing with the meds in small baggies. She also would take a permanent marker and mark the lids with a large letter or 2 (like T for Tylenol or VE for Vitamin E) so she didn’t have to read each one when she refilled the baggies. She would reuse the top when the refills came. I don’t know if that would help but I thought it was a good hint for time saving. Love, Ruth Anderson


    Hang in there. We are all praying for you guys.

    ReplyDelete

Post a Comment

Popular posts from this blog

One Last Update😢

Image
Although many of you probably already know the ending of our update, I feel it is important to explain how we got from normal treatment in Vienna to losing our Layla in three weeks, since you shared our journey. We left Vienna on Thursday, February 27 to Berkeley, California with the promise of a new treatment, Side Effect Free (SEF, pronounced 'safe') Chemo.  Due to several immune related adverse events and other challenges, we needed to pause immunotherapy for several months and we had been assessing SEF chemo as a non-immunotherapy backup plan should this ever happen. Our time in the San Francisco Bay Area was very short lived as Layla was getting very weak and was developing upper respiratory issues- with symptoms progressing significantly each day. She had developed Lymphangiosis carcinomatosa, a very rare form of metastasis from breast cancer that spreads to the pulmonary lymphatic system and eventually severely impacts the lungs. We also learned that the pulmonary
Read more

COMPLETE REMISSION!!!!!! (Update provided 8 months later)

Image
Our new pet outside our hotel room Update: We are thankful to our medical team , our complete remission lasted 6 months. We are continuing treatment with Doctors Kleef, Williams and Rosenberg.  Please refer to updated blogs! We are in disbelief. Four months ago, I broke the news to Layla about the scan results showing that the cancer was now in her liver with too many lesions to count. It was a miserable day with lots of tears and pain.  Layla looked at me and asked: "Does anybody ever come back from mets in liver?, I am not ready to die!". The odds are super slim. While we were all trying to come to terms with the new escalated level of the disease, Nina was already looking at all the options that she knew of and what was the best way to turn this nightmare into a blessing in disguise. With the metastatic disease now in her liver, Layla became a candidate for the OX40 Intra-Tumoral injection (Stanford Study) but needed treatment to shrink the extent of the lesions
Read more

Early Christmas Present!

Image
A Quiet Moment. I hope you all had some time to relax and enjoy the holidays. Our Thanksgiving was not traditional but still very nice. We missed our yearly get together with the rest of the family but were joined with Wes and my sister Cathy and nephew Dan. We celebrated Dan's 25th birthday. Layla had treatment Monday through Wednesday. Wes accompanied her and got to meet Dr. Rosenberg and the nursing crew. Our Thanksgiving consisted of a pre-ordered Whole Foods Turkey+ Meal along with some home made stuff. It was delicious!  We might have a new tradition from now on! We hung out mostly at home. Layla was exhausted, a side effect of both immunotherapy and chemotherapy. We had rented a house for 6 days to bridge the gap between our Mexico trip and our third phase of treatment. Happy Thanksgiving! Layla modeling her new outfit dubbed the "Huggle" (gift from Cathy). Olaf is not sure about the portions! Family Thanksgiving Selfie. On Saturday
Read more