15th Anniversary Post: Blog Subject Becomes Blogger

I started this post to reflect on things coming full circle, with Mollie, who just finished up her freshman year at UCSD, starting to blog about her cancer experience as a cancer survivor.  The crazy thing is... my very first post on this blog was exactly 15 years ago today!  This was totally unplanned.

Things have changed a lot in 15 years and while the initial shock and fear of dealing with pediatric cancer have long since faded, the traces and impressions still show up as reminders in the ebb and flow of daily life. 

Mollie is living life to the fullest- though her high school experience was interrupted by COVID-19, she got involved, stayed active, and found her people.  Her freshman year at UCSD flew by (at least for us) and we poked and prodded her to apply for some scholarships.  And much to our pleasure, she was awarded the LLS Scholarship for Blood Cancer Survivors!

She can say her feelings about all of this much better than I can, so I'll refer you to her LLS bio and her blog.

https://www.lls.org/story/mollie

https://iloveyou-frommollie.blogspot.com/

Happy Summer Solstice!

A side note about the side bar quote:  Lance Armstrong sure had a fall from grace, but I can't bring myself to remove that quote.  I like it. It takes that kind of positive attitude and resilience to beat cancer at any age.  The Livestrong Foundation continues to help people with cancer, though the positive impact doesn't justify or counteract his unethical behavior as an athlete.  That Armstrong is still actively participating in society, even after his personal failings came to light in the most public of ways, is a demonstration of resilience.

America Deserves a Better

A month from now will mark 9 years since Mollie was diagnosed with leukemia. Our world was turned completely upside down. We had health insurance and the pediatric oncology clinic social worker advised us, in no uncertain terms, to maintain that insurance coverage at all costs. I quit my job to stay home and care for this 4-year old cancer patient, and we relied on Matt's employer-sponsored health insurance.

Thankfully, Mollie responded well to the chemo and achieved remission right away. Still, there were 2.5 years of chemo ahead. These were HARD years. We lived in fear of relapse, we always worried about finances, and the endless weeks of taking care of a kid on chemo so toxic that we had to handle it with gloves took a toll.

In the middle of all of this, the company Matt worked for consolidated and moved to a different state. We didn't want to move or sell our house at that time, but we were very, very concerned about any lapse in coverage. We knew that if we turned down the relocation, we would run a risk of Matt not finding a comparable job before COBRA benefits would run out. We didn’t have much of a choice because if Mollie lost coverage, it could be prohibitively expensive or even impossible for her to ever get health insurance again. 

Essentially, were forced to relocate in order to maintain continuous health insurance coverage. We sold our house at a significant loss; we had to move away from our beloved pediatric oncology caregivers, and our sweet daughter, who had already been through so much, had to change schools before first grade.

When the ACA was signed into law, preexisting condition exclusions were prohibited for children immediately. For us, and so many other families, this meant freedom. We could breathe easier, we could make decisions about our careers and living situations without worrying that our children might not be insurable if things didn't go as planned.

The AHCA bill is a step in the wrong direction. The passage of the AHCA in the House shows a callous disregard for basic and life-saving care for millions of Americans. Access to health care can make or break a family. Complex care, like treatment for cancer, cannot and should not be handled in emergency rooms. We ALL benefit when our neighbors are healthy, whether we think they are productive members of society or lazy slobs. I hope that the Senate will set the AHCA aside and focus on making real improvements to our health insurance system by working with all the stakeholders, like hospital groups, insurers, doctors groups, patient advocacy groups, etc. My daughter deserves better. We all do.

Life is good!

September 3 marked the 4th anniversary of Mollie's last day of chemotherapy.   Back in 2010, she had landed herself in the hospital with a severe rash, swollen gums, and fever.  A new hospital, in a new city, with doctors we had never met.   She wasn't showing signs of improvement for about a week, so the oncologists decided to do a bone marrow aspirate and a skin biopsy.  On what would have been her last day of treatment, we should have been celebrating her last chemo dose.  Instead, we were in tears watching her get wheeled off to surgery, and then waiting, scared to death, to find out whether she had relapsed.

We are so thankful that is in the rearview mirror.  An understatement, yes, but there is no way to truly convey how relieved, blessed, and happy we are.

Mollie also had her annual followup with her oncologist here at Children's Hospital Oakland.  She got a clean bill of health and a little medical education from Dr. B.  She got to listen to her own heart, chart her growth, and learned about percussion of her abdominal organs and palpation of her lymph nodes.  She does have some palpable lymph nodes and slightly enlarged tonsils- maybe signs that she is fighting a cold, but nothing worrisome or abnormal given her overall health.

The best news is that she doesn't have to go back for a year!  And she won't need another echocardiogram until 2018 because she received the lowest anthracycline dose and her scans have been consistently clear.

If you are so inclined, please check out our Alex's Lemonade Stand Million Mile Run page.

Mollie and Lucy's awesome cross country coach (Marin) wanted the team to do this as a service project.  The miles logged aren't up to date, but we will get there!  Mollie and Lucy are dedicated to XC.  Mollie loves running and has already shaved 3 minutes off of her mile from last year!

Thanks for checking in…

Sarah

6 Year Anniversary

In some ways, six years ago seems feels like a lifetime ago.  Mollie was so little, a few months younger than Liam is now, when she was diagnosed with leukemia.  I almost can't remember what our daily life was like before that diagnosis.

Mollie on her first communion day.

Today, we are all different.  We still feel the effects of this devastating diagnosis physically, financially, and emotionally.

Ready to show her artwork at the school talent show.

But, for the most part we are fine.  Mollie still doesn't really like to talk about her "cancer" experience, the long hospital stays, and the chemo.  And Lucy is very afraid of short hair and hair cuts- we wonder if she associates Mollie's bald head and constantly short hair with all the hospital and clinic visits and periods of Mollie not feeling well.

Dress (and act?) crazy day.

Most of the time we are just busy with the day to day activities of school, work, and sports.  Childhood cancer is all around me, but I avoid thinking too much about it.  I don't know whether it is still too painful or I just want to focus on other things because I'm afraid it will rear its ugly head again?  Or maybe because in this family with 3 active children, we just don't want to make room for cancer.

Last day of school.

 I do hope that one day we will have the opportunity to set up a foundation in Mollie's name, to give back, to help other families in the same position we found ourselves.  I'm most interested in siblings/whole family support, counseling for parents, and long-term effects on survivors.   Navigating the world post-cancer is tough.   We had a laser focus on Mollie's survival for several years, and it is still challenging to get back to "normal".  It is hard to know what to expect and what kinds of questions to ask of doctors & teachers. How do you communicate the whole experience to new friends who didn't know you when you were going through it? 

A's fans.

We know we are lucky the Mollie not only survived, but that she is thriving.  Our challenges are minor compared to so many affected by childhood cancer. We are so thankful to everyone who helped us get through the diagnosis and treatments.  And we appreciate how fortunate we are to be surrounded by these three happy, inquisitive, creative children 6 years after that heartbreaking day.

Five

Today marks FIVE years since Mollie's initial diagnosis with ALL.

Since Mollie's chemotherapy treatment ended, life has been full of all kinds of wonderful and challenging adventures.  Mollie has been in dance performances, girl scouts, taken tennis lessons, and played her first season of basketball.  We live in California now! Life is full of family, beautiful weather and landscapes, new and old friends, weekend adventures, church, school, work, etc.

Matt and I still think about leukemia often.  Not every day, but often.  I can still hear the exact inflection in Dr. Vega's voice when he said to us, "She has leukemia."  The hectic events just before and after getting the diagnosis come back to me in flashes.  My stomach still drops in that same way when Mollie has a fever or seems lethargic and ill.

When we first started reading the treatment protocol, 5 years seemed like a lifetime away.

Yet here we are. These 5 years have been a second chance.  Mollie has turned into a wonderful, sweet, warm-hearted person!  She is healthy, confident, sharp as a tack, and just cares so much about PEOPLE!  I no longer keep calendars for medications, place hand sanitizer on every horizontal surface, or carry a Huber needle and EMLA cream in my purse.

I feel a little ambivalent about this day.  Yes, five year event free survival rates are used as an endpoint to assess the effectiveness of different treatment protocols.  And the risk of relapse drops (I think- will double check the numbers with the doc tomorrow).  But those numbers don't predict what is going to happen to my family, my child.

Cancer took away our sense of ease and safety.  I am keenly aware that life could change, again, for us in a heartbeat.  Doctors and scientists are still learning, along with us parents, what the long term effects of 3 years of oral, IV, and intrathecal chemotherapy are on growing bodies and minds.

Mollie is sure of herself, yet aware of her limitations.  She knows about her health issues and is  motivated to exercise, eat healthy foods, and take care of her body.  Though it won't be carefree, I am very hopeful for her future.

My heart goes out especially to the families of those children that didn't make it to five years.  And those who continue to struggle.

Mollie is excited to host her first ever lemonade stand to raise money for the Alex's Lemonade Stand Foundation in honor of this momentous occasion.  Please find her fundraising page here and stop by in person if you are local!

Pneumonia No More

A difficult thing about parenting a cancer survivor is not freaking out about relapse with every cough, fever, or "I'm not feeling good" complaint.  I mentioned Mollie's lingering cough in the last post-  this cough had been with her since Memorial Day.  She had been through two bouts of antibiotics, and a few days of Claritin (or Allegra?), and seen three different doctors- the darned thing just wouldn't go away.  None of her medical team seemed very concerned and chalked it up to allergies or "something viral".  

But, around the 4th of July we got fed up and worked ourselves into a bit of worry about the stubborn cough.  I took her in to see a different doctor than we had seen previously.   Dr. Thomas also thought it was probably residual bronchospasm from having a cold, but he did an X-ray to rule out anything else since the cough had persisted for more than 4 weeks.  He said the X-ray looked fine and sent Mollie home with a low dose, short course of steroids to help kick the cough.

Lo and behold, we get a phone message from the doctor's office a few days later telling us it was important that we call back because there was some additional information about Mollie's X-ray that we needed to discuss.  Of course, they were at lunch when I got the message,  so we really freaked out talking about all of the what-ifs.  Seriously, if you are in the medical field, please don't leave those kind of messages for people who have been through something like cancer.  Make sure you stick in a "don't be alarmed" or something.  Geez!  Oh yeah, and it would have been nice if someone had mentioned that a radiologist was going to review the images and get back to us-- we might not have panicked if we had been expecting a follow up call from the doctor!

Anyway, the outcome was that Mollie had a little bit of fluid in her left lung indicating pneumonia and they put her on broad spectrum abx in addition to the steroid.

We went back for follow up yesterday and the doctor (and radiologist!) confirmed that the pneumonia had resolved.  Phew!

Mollie and Lucy head off to Camp Rainbow this weekend.  While they are gone, the movers will come do their thing.  We will pick the girls up from camp and then start the cross-country trek to our new home in California.  Lots of balls in the air and I can't wait until it is over, however I'm a little sad and reluctant to leave the life and friends we have here in North Carolina.

Clinic Update

I'll cut right to the chase... Mollie's blood work came back fine!  Happy dance!

Dr. J thinks this lingering cough is allergy/post-nasal drip; her lungs sound great and she has a prominent lymph node or two, consistent with a cough/allergy.  No evidence of bronchitis or strep. Unfortunately the blood draw was an arm stick (not the preferred finger stick), but Mollie was a trooper and didn't even cry!  Her WBC is 12.3, ANC is 8000, hemoglobin is 13.6, and platelets are 237,000.   All of her other blood chemistry (electrolytes, liver markers, kidney markers) looked fine too. 

This was Mollie's last appointment at Levine Children's Hospital.   It is a great clinic and a wonderful group of people.  We will miss the staff and Dr. J!  Hopefully the new clinic will be up to snuff!