• Today was a good day

    Almost two months after her first dose of immunotherapy, it was time for a new round of scans and an appointment with Dr. Finn at UCLA. As you all know, Megan’s had a rough last few weeks, main symptoms being dry eyeballs, low energy and not producing saliva. At last month’s doctors appointment, we were kind of just told to hang in there. With her getting better slowly, we weren’t sure what we were hoping for.

    There was one thing that we kept secret. I guess it was because we didn’t want to get our hopes up or jinx things, but we also didn’t want people to get too excited. Megan hasn’t been able to feel the tumors in her belly. If you’re just catching up on things, that’s how Megan found the masses in the first place, which led to biopsies, which then led to a cancer diagnosis. Considering that she had lost 20lbs, there was the obvious possibility that her masses have gone into hiding and weren’t able to be felt anymore. But then again, there was a small ray of hope that something major had changed.

    Fast forward to the day after the CT scan (today), we headed to UCLA to meet with Dr. Finn. After waiting nearly an hour he popped his head in to apologize and said he would be with us soon, but wanted us to know Megan’s tumor had shrunk dramatically. He then closed the door and went to see his other patient. It was a moment we regretted not recording or throwing up on FB Live.

    Needless to say we were shocked and thrilled. When he finally made his way to us, he gave the details. The large tumor, Timothy is now half the size it was at the last scan. The other sizable tumor shrank 30%. The speckles of cancer in the liver are nearly gone. He cannot explain it and he wasn’t expecting it. Needless to say he was extremely excited about the results considering that it was just after one dose of immunotheraphy (nivolumab). He explained that with immunotherapy there is so much that isn’t known. His best guess is that the treatment was a spark that jumpstarted her immune system to kick into hyperdive and kill everything off. Hopefully this will continue without having to have another dose. If it does, it just might happen that Megan and the Tims will be the topic of a paper written by the famous Dr. Finn. Now we just watch her fight those tumors.

    In other Megan news:

    • She has gained enough weight back and looks good, although doesn’t have many clothes that fit.
    • Her eyes continue to be a big problem. They are very dry and sensitive to light. Dr. Finn is going to refer her to an ophthalmologist at UCLA. She is not producing any saliva so constantly has a dry mouth and it makes it difficult to eat.
    • Megan will have another scan Jan 23 and follow up with Dr. Finn on the 24th. It is our hope that she will continue to destroy these tumors. This is the best news we have had in a long time and the best Christmas present we could hope for.

    Now tears are of joy! We are so proud of my lovely daughter/wife for her tenacity, bravery and attitude. A huge thank you to all of you for your love and support, keep those good vibes headed our way.

  • Rollercoaster

    Megan may love rollercoasters, but this is one ride she is ready to get off!  It has been overwhelming for her and Danielle, things changing daily, sometimes hourly.  I will try to reconstruct the past few weeks:

    10/14 First immunotherapy.  Followed that evening by a trip to ER with severe pain.  Pain diminished, ultrasound showed nothing and she was released at 2 am.

    10/17 Last time Megan was well enough to go to work.

    During the week she developed among other things: flu like symptoms, including fever (sometimes very high), chills, aches, diarrhea, etc.

    10/22 Was a major effort on the part of Megan and Danielle, but at Megan’s insistence they make a 1.5 hour drive (one way) to attend Gupta and Erin’s wedding.  M&D were so happy to be a part of their celebration, sure hope the pictures are good.

    10/24 Symptoms continued to worsen, Dr. Finn’s office wanted her to come in for an appointment.  It was decided she should be admitted to the UCLA Santa Monica hospital.  Between fighting with insurance company and waiting for a bed to open, Megan began to feel worse.  Her heart rate was up and she was vomiting.  She was told to go to ER, after waiting in at the dr. office for nearly 6 hours.  Once finally admitted, did blood work (twice) and a plethora of other tests, daily.  Began treating all her symptoms.

    10/25 No signs of infection, doctors think all symptoms were related to immunotherapy.  Fever continued off and on, rash would come and go.  Some back pain.  Medications for all the symptoms.  Danielle spent a second night with her in the hospital.  Normally no side effects from immunotherapy appear until at least after six weeks of treatment.  My daughter, the trail blazer.

    10/26 Thought she would be released and I decided that I needed to be in CA with my girls.  High fever returned, so they decided to keep her another night.  I flew into LAX instead of Long Beach and went to the hospital.  She was not doing well at all when I got there, fever high, ice packs all around her, curled up in a little ball. Not what a mother wants to see.  Worst part is that my kiss did not make it all better.  Sent Danielle home to get a good night’s rest in a bed while I stayed with Megan.  So grateful Danielle is part of our family!

    10/27 Fever continues to come and go, she now has thrush and a sore throat, so she is not eating.  Her diet is basically ice chips and applesauce. Her mouth is extremely dry, as are her eyes.  They decided to let us go anyway, checking out at 4 pm, with a terrible drive ahead for Danielle to get us to Long Beach.  Took about 2 hours to get home.   Dropped Megan and Danielle off and I went to pick up Megan’s 7 prescriptions!

    For the next several days she continued off and on with fever, very fatigued, dry mouth and eyes and throat getting worse, not eating much of anything other than ice chips, applesauce and sometimes a protein shake that Danielle makes for her.  Megan compared a normal sore throat pain as a 3, this pain was an 8!  Almost everyday someone stopped by to visit her.  Even though she wasn’t very sociable, the visits were always welcome, thanks to those of you who were able to stop by.

    11/1 Appt with Dr. Finn.  He reminded her immunotherapy is non-toxic so this wasn’t supposed to be happening.  He thinks the pain in her throat is an ulcer on her uvula, and that it’s quite possible that she has more down her throat.  She has an appt with an ENT Dr on Thursday, at 4:30 in Santa Monica.  If it is a virus, which is what Dr. Finn thinks it will just have to run its course.  He gave Megan an RX for lidocaine, which she said is by far the worst thing she has ever put in her mouth and unfortunately did not numb the pain much. She has lost 14 lbs in 8 days.

    Dr. Finn thinks this is all related to immunotherapy.  His main goal right now is to get her symptom free.  She has her next appt with him in two weeks.  He will order CT scan and re-evaluate her treatment plan.  I too want to see her symptom free, so I continue to stick around until that happens, or until they throw me out.  Hopefully she is at her worst with the ulcer in her throat and tomorrow I can start on a wonderful task – Fattening her up!

    Thank you for all your positive thoughts, cards, flowers, presents and visits.  They all make a difference so please keep them coming.