Mom had started her new Chemo pill last Friday 8/17. It’s 3 pills at a time, twice a day. This morning as she was getting ready for a dr. appointment she fell and we were concerned she may have broken her arm. Fortunately she does not have any broken bones but it was determined that her enzymes are very low in her liver (more-then-likely due to this new Chemo) so they are keeping her under observation today to get this under control and hopefully helping her feel better in the coming days. I will try to update again as soon as I hear anything else.
It’s been awhile since we updated the page and I apologize again. There has been several doctor appointments and discussions on my mom’s current treatment plan.
I know many people have been reaching out to my parents and myself for updates. My mom is experiencing a lot of pain right now. The most pain she’s ever endured. She has not had any treatments for several weeks. The pain has kept her sleeping and lying down almost non-stop. Her appetite is also not well. She has been wanting a lot of privacy and I appreciate everyone respecting that. She is currently taking a very strong pain pill with morphine to help ease her discomfort. Unfortunately it’s not doing a whole at the moment.
Dr. Zakari suggested a chemo pill combined with one of the previous therapies she had in the past. Last week, she visited a new doctor at ORMC to try to get a second opinion including any surgical options. Dr. Kayaleh was very compassionate and agreed with Dr. Zakari’s suggestions. Mom decided to move forward with this treatment. We hope she will be starting this week. Once we begin I will try to update as much as possible.
Please know my parents need a lot of strength right now. My mom is aware that people are concerned and love her and if you need to share anything here, please do as she does read this website.
Yesterday we all got together to relax and enjoy some time together as a family with mom. Jon and I brought dinner and cooked for everyone. Mom was feeling good despite the respiratory infection she brought home the day before. She was doing her usual “What can I do to help??” 🙂
After dinner we were all relaxing playing cards. Mom started to feel feverish again and sure enough.. back up to 101. 🙁 She was feeling better after resting of course. We are all hoping that there will be this new treatment coming and that the fevers will subside and she will feel well enough to start getting out more. As soon as we get an update with Oncology we will let you know! Thank you again to everyone who has expressed their well wishes. Please keep them coming.
Mom was released from the hospital Friday afternoon. The conclusion after non-stop testing was that the fevers are more-then-likely caused by the tumors. Mom is getting fevers every day now and has to simply take Ibuprofen and relax.
The doctors did meet Friday to discuss my mom’s case. We are hoping by early this week we will have a course of treatment based on their genome test findings.
She did leave the hospital with an upper respiratory infection which is being treated by heavy antibiotics. Needless to say she was pretty annoyed arriving at the hospital with one illness and leaving with more..
Mom is still at Florida Hospital Altamonte. She has had a battery of tests done since she arrived late Monday. So far we know she has no blood clots in her legs, no muscle damage and most of the testing has come back negative. At this point they haven’t determined the cause of the infection.
She’s trying to rest but the amount of doctors and nurses coming in really keeps her from relaxing. We are hoping to have some results soon and get her out and back home. We appreciate all the posts on social media and her website. 🙂 It’s wonderful to have so many people who love her. Thank You! xo
Yesterday evening Mom was admitted to Florida Hospital Altamonte for an infection. She has been feeling quite ill for weeks battling daily fevers. At the time I’m writing this post, there are no specific updates as far as what the infection is, or how they are treating it. They have been running a battery of tests since last night and so far what they have has come back negative. This is the first time she’s been to the hospital since her diagnosis which on a positive note is a good thing.
I’m not sure yet when she will be discharged. My dad is staying there as well. Anyone can contact me directly if needed if they have any questions or share well-wishes which I will pass on to her. She does read her website frequently so positive thoughts would be wonderful right now.
Mom went to the Oncologist for her CT Scan results. As she expected the tumor has increased in size by .2 mm. It’s a small increase but nevertheless not positive news.
Mom has been feeling very ill since she started this new Chemo in May. She was supposed to have 1 more treatment next week but has decided to stop. Dr. Zakari has requested a consultation with his team this Friday, July 20th to discuss options including a pill that is typically used to treat Melanoma and another pill used to treat Breast Cancer. This is based on the Foundation One testing Mom had back in April when her tissue was sent out for a genomic profile of her tumor. Based on their findings, she has a similar DNA structure as those with Melanoma/Breast Cancer, therefore we are hoping using these options to better target the tumors will give her positive results.
I ask that you please send your regards, positive thoughts and any other encouragement to both my parents. They are going through unimaginable stress right now and need all the strength possible.
As I mentioned in my last post, mom is currently using a ‘spicy’ mix of chemo. The plan is to have 5 rounds of this nasty stuff before the next meeting with Dr. Zakari.
This is probably one of the worst treatments I’ve seen my mom go through. She started this mix just days before Madison’s wedding and was able to perform the ceremony beautifully. This mix has made her incredibly sick and tired. I honestly do not know how she manages to do this. After the first 2 rounds, they dropped it down 20% in hopes of it helping and it has done little to improve. She has 1 more round this week before getting a CAT scan done.
July 16th is her next appointment with Dr. Zakari. The purpose is to discuss further treatment options, possible immunotherapy treatments, clinical trials, etc. We all hope for some positive news as this last round has really brought her spirits down. She needs all the positive energy and strength at this time.
Once again, i’ve been slacking on the updates and I apologize! The past 2 months have been very busy for our family.
My parents sold their house in April after 25 years and bought a lovely one-story townhouse in the same neighborhood. We spent weeks downsizing 40+years of accumulated ‘stuff’ including furniture, art. My parents also gutted the new place so we had contractors in-and-out during as we were moving furniture in. The end result though is a beautiful place for my parents to call home.
My mom visited Tampa May 2nd in hopes of getting a clinical trial. Unfortunately, there were none available (they were all active and you have to start at the same time they start). It was disappointing news for us to hear as she had been without chemo for several weeks.
Chemo- My mom opted to use a ‘spicy’ mix of chemo that Dr. Zakari suggested for the time being. My mom being as strong as she is, took her first round 4 days before Madison’s wedding. The chemo was rough and my mom was brutally sick for days. She is supposed to have another round next week (May 29th).
My mom really outdid herself and was present and performed Madison and Jonathan’s wedding on May 19th. It was beautiful and made me proud to see her do what she planned on doing all along despite how she felt.
Here’s some photos below of the big day! I will do my best post more very soon. Again, please do keep my parents in your thoughts.
This past Monday we had an appointment with Dr. Zakari. We didn’t receive the best news. The tumors have grown in both the Liver and slightly larger in the Pancreas. We agreed that continuing the current chemo treatment was not helping. Right now we are waiting on the genome test results to determine what options to take for Clinical Trials.
We have been reviewing the different locations that offer trials and are looking at the Moffitt Cancer Center in Tampa and possibly the Mayo Clinic in Jacksonville. Until we get these results we don’t have a specific direction. As soon as we get any information I will pass it along.
This appointment was problem one of the most difficult for our family to hear since the initial diagnosis. My mom is strong and she’s not ready to give up. Please keep my parents in your thoughts. We need all the strength and encouragement right now.