I used to blog about Lily and her treatment

 I loved reading this story about Lily and Lily's Garden.  She's now 23, and I blogged about her childhood cancer and her relapse years ago because I met her grandparents and aunt when I began blogging in 2003. 

https://issuu.com/vanderbilt-ingram/docs/vicc_momentum_winter_2025/s/66101244?

Collecting My Thoughts: Lily’s Leukemia battle

Collecting My Thoughts: Larisa’s report on Lily’s Leukemia

Collecting My Thoughts: Update from Larisa on Lily’s leukemia

Collecting My Thoughts: An update on Lily, Leukemia survivor, from her mother

Collecting My Thoughts: Childhood cancer--a grandmother's guest blog

Larisa’s report on Lily’s Leukemia

Parents of ill children go through so much!  Hold this family in your prayers!

“Lily had clinic today. It was her typical monthly check up. Her numbers still look good. I’m waiting for the day they are all in the normal range but that will probably be a while.

We have been working to get her infusions started for her IGG treatment. The process has definitely tried my patience—it’s been 2 weeks now. Not only are Lily’s numbers extremely low which is dangerous but we have a vacation planned at the end of this month and I’m nervous her traveling with such a low immune system.

We have been blessed overall with good insurance and Vandy who has fought for Lily. However these home infusions go through a different provider that works with Blue Cross for approval and then CVS to set up the infusions. I work in the insurance world so I understand the hoops they put up, but the process has been exhausting. I’m pretty sure Blue Cross and CVS wish they had never heard of us as I have set up daily calls with them to discuss their progress with approval.

Finally we got approval today. They say we can start soon. My definition of soon was today but I understand their definition maybe more like later this week. Ha!

Anyway prayers for these infusions to get started, Lily to tolerate them, and for her to get enough prior to our trip for her to be at a safe level would be appreciated.

Later this week, Lily returns to the endocrinologist for a follow up on the issues with her thyroid.”

An update on Lily, Leukemia survivor, from her mother

Lily’s grandmother Carol posted today that she’s been accepted to 5 colleges, despite losing 4 years of formal schooling due to her illness and treatment. I’ve been following her story for 10 years, since Lily was 7 and I met her grandmother, aunts, and great grandmother as a blogger.
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“It’s been awhile since I have updated but Lily is doing great. Last week we went to her monthly clinic visit. Her blood counts looked good. She is also feeling much better. As Deb said being off therapy agrees with her!

Her back has improved dramatically since coming off chemo and starting acupuncture. Still not sure how it works but it does. She has weaned off all of her back pain meds and even most of her neuropathy medications. Thanks Libby! This has truly been a blessing and has allowed her to do more in her weekly PT sessions and be much more active and pain free.

They also checked this month her IGG levels. This is the body’s ability to fight getting infections with antibodies (in basic terms). She has had low levels for a while and was receiving infusions monthly however the last infusion she had she had a pretty severe allergic reaction. We had truly hoped the number would get better coming off chemo.

However her IGG level was just 125 last week. Normal I believe is around 800. There is also evidence to show that the Blincyto or immunotherapy drug she took can cause long term and most likely a permanent decrease in B cells thus IGG. This will most likely mean some type of infusion either weekly or monthly. There is supposedly a different infusion, she can get that is weekly that has less reactions. Probably for the rest of her life. It isn’t unexpected but kind of a tough one to think about long term. I know we / she will get use to it and adapt. I also know she generally feels better when she gets the infusions. However as a mom, I worry.

It also throws a small wrinkle into college plans for her. Wrinkle maybe wrong word, but it adds another element to consider since we need to figure out how she will do this if she moves away. I’m sure it is possible just another thing to consider.

She has been accepted to 5 colleges and all of their nursing programs! I’m so proud of her and while it is scary at times I want her to be able spread her wings. Some of the colleges are relatively close but some others are quite a ways away. I don’t want this to be a major consideration in her decision so I know we need to get a plan in place soon.

Anyway she has an appt on Monday with the immunologist to discuss in way more detail.
Lastly she is getting her port out on Friday morning! It’s exciting to get this out. She will also be having her prior scar revised since it hasn’t healed well. It is a pretty easy surgery but still surgery and I’m sure she will be down a few days.

She has a bunch of appts over the next few weeks. The port removal. Immunologist. Ortho follow up. Endocrinology follow up. And another monthly clinic visit to the oncologist. I will try to update on the important things.

Thanks for all the support. I hope everyone had a wonderful Thanksgiving!
Love
Larisa

Update from Larisa on Lily’s leukemia

“Today Lily had her first 4 week off treatment appointment. Her counts looked good. Not quite normal yet but that is expected. She is feeling much better off chemo. Her back pain which was causing a bunch of issues a couple of months ago is much better since she started doing acupuncture!

Overall Lily is doing great. She is enjoying her senior year of high school. She has heard back from two colleges that she has been admitted and is waiting on her final 4 colleges and nursing programs to make a final decision.

Overall her body is still recovering from the two years of more chemo. This month they are running some additional tests to see how her immune system is recovering. Those results will take a couple of days. In addition she is continuing to follow up with orthopedics on her back — they recommended acupuncture which is working so praying that continues to improve her back and overall pain level. She will also follow up with endocrinologist in December. We are hoping getting off chemo will help with the issues she has had there. Time will tell on most of this. We are cautiously trying to wean her off some more of her meds. It will be a slow process.

So on a different note please send up a prayer for our sweet clinic friend Finn. His cancer continues to spread. He and his mom sat often beside us at clinic. Such a sweet family. Please keep them in your prayers. Rhabdo is a horrible cancer.”

https://collectingmythoughts.blogspot.com/2017/09/childhood-cancer-grandmothers-guest-blog.html

https://collectingmythoughts.blogspot.com/2018/09/lilys-leukemia-battle.html

https://collectingmythoughts.blogspot.com/2018/09/september-is-childhood-cancer-awareness.html

Lily’s Leukemia battle

I’ve had a stiff back for 2 days—this should put it into perspective—Lily’s battle with Leukemia.

She relapsed after years of having her cancer under control and was doing the normal activities of teen-agers.  I’ve been following her grandmother and mother for years on blogs and Facebook.  Here’s what Larissa (m0m) wrote as Lily took her last med in this round.

In no particular order—

2 years of treatment
20 doses of Vincristine
15 doses of 6TG
15 spinal taps with Methotrexate
20 doses of ARA-C
2 doses Intermediate PO Methotrexate
2 doses of Pegaspagase (discontinued due to anaphylaxis shock)
9 doses of cyclophosphamide
2 doses mitoxantrone (big blue)
6 doses Erwinia (discontinued—blood clots)
36 hrs high dose Methotrexate
9 doses Etoposide
84 days Blincyto
56 doses of PO Methotrexate
415 doses of 6MP
170 days Dexamethasone

And with one gulp she is done!

September is Childhood Cancer Awareness Month

I met the Shaw women through blogging 15 years ago. Four sisters, their cousin and their mother who is now over 90 all bloggers. All were pastors’ wives or teachers or both.  They are an amazing family.  Now they are all on Facebook, so I follow and talk to them there. This post is from Facebook and is by Larisa, Carol’s daughter, whose daughter and Carol’s granddaughter, Lily, was diagnosed with cancer over 10 years ago, had passed the important milestones, and then two years ago had a relapse.  She writes:

September college football, relapse, end of treatment, childhood cancer awareness month!

I head into September conflicted once again. 10 years ago the first September after Lily was diagnosed I charged into the month determined to raise awareness for childhood cancer.

The last 10 years hasn’t weakened my resolve, but it has rocked me to the core. The first go around I was filled with the hope and confidence of a fighter in their first fight beating their opponent. Now bloody and tired we are trying to deliver the knock out punch praying cancer stays down on the mat for not sure how much more we can take.

2 years ago on September 1st I remember feeling almost guilty posting about childhood cancer awareness month as I thought about Lily surpassing the ages of many of the friends we had lost. She was doing so well. I remember telling Deb at a fundraiser I felt we had reached the point cancer didn’t rule our lives.

That obviously all changed Sept 22 of that year with one blood test. Over the past two years I have waffled between thankful my baby is kicking cancer’s butt for the second time and very mad/sad over the fact she would have to deal with this all again after overcoming so much. I’m mad I couldn’t protect her from that. Mad she has so many horrible side effects. Mad she missed out on so much.

Many people say cancer parents are so strong. I don’t know how accurate that is. Often I feel like a stronger person would be able to protect their child from the horrors, instead as a cancer mom I am responsible for making sure she gets to and through every single bit of torture that could kill the cancer and then smile and continue life as if this is all normal.

I count out 20 or more pills a day for my child to take.

When she hurts I offer up not Tylenol, but oxycodone.

I thank the nurses when they hook her up to toxic chemo therapies.

I calmly call over a nurse and doctors when her throat starts closing from infusions.

I have pushed chemotherapy directly into her blood stream.

I kiss her forehead and help them position her as she drifts off to sleep so they can inject poison into her spine.

I sucked dead skin out of her mouth with a small vacuum and hid the flesh that came out so she wouldn’t see how bad it was.

I’ve helped them hold her down to give painful shots.

I silence IV pumps when I can’t take the beeping anymore.

I have stayed up all night to press the morphine button so she will sleep through the pain. Praying she wouldn’t remember the pain and she wouldn’t become an addict.

I have given multiple shots a day into her abdomen. I have asked her younger sister to give her shots too when I wasn’t there .

I have smiled and tried not to act like it didn’t make a small part of me feel inadequate when some well meaning parent gave me a homeopathic “cure” that I knew was bogus, but still made me question myself.

I have brushed out clumps of hair from her head. Twice.

I have smiled and laughed as they have shaved off her beautiful blonde hair. Twice.

I have kissed her forehead and caressed her face with the true intentions to see if she has a fever.

I have remained calm when people have asked what we did to cause the cancer.

I have told her I needed a shower when really I just needed the water running so I could cry without her hearing.

People think cancer moms are strong but we are just doing what we have to do.

I can’t even speak for all cancer moms because while I have done many hard things, I have never had to do and pray I never will have to others.

Explain to my child what hospice is.

Hold her hand and kiss her and let her know it’s alright to go.

Go to her funeral.

Wake up each day and go to sleep not being able to do all the horrifying things that I’m privileged as a cancer mom to be able to keep doing.

The true heroes in the battle are our kids. I am as close to her battle as I can be, but never once have I had to actually take all those pills or head off to clinic finally feeling ok after weeks of feeling bad only to get another dose of medicine that will make me feel horrible again.

While I know as an adult - true friends are hard to come by, it is a hard lesson she had learned now twice that while everyone comes around the initial diagnosis that their lives continue and that when your life is chemo and blood counts it is hard to identify when their lives are homework, boys and sports. Sometimes it leaves you feeling like an outsider just wanting to be part of it.

Or that when you have no hair, it’s horrifying but it’s also hard when your hair grows back and no one understands the battle you are still raging.

So it has taken me 3 days into September to figure out what to say. And I still haven’t. I’m pretty sure no one wants to read a depressing post but it’s honestly where we are right now. So, I still have nothing much to say inspirational other than we need a cure. We need to do better for these kids. We need to better support them and their families. And September is our month as childhood cancer fighters to bring that awareness to the forefront.

I have watched the past couple days while numerous friends have turned FB gold for the kids. Some I know have done it in honor of Lily and that makes my heart sing. We have come so far in 10 years and I appreciate those of you turning FB gold while I have been standing in the corner of the ring trying to figure out how to finish this fight.

So for September if everyone who follows this page could just do one thing to help the kids fighting this battle. Give a hug to a friend fighting. Take a meal to a patient. Change your FB page gold to support the kids. Make a donation (no matter how small) to an organization that helps find a cure or support families. Just one small gesture will make the difference.

Herb Garden Ciabatta

Click to enlarge so you can read the recipe.
From the article, "Bread for the soul" by Lisa Kingsley and Wanda J. Ventling, Lily; beautiful living through faith, Spring 2006, pp.86-93.

Then Jesus declared, "I am the bread of life. He who comes to me will never go hungry, and he who believes in me will never be thirsty." John 6:35 (NIV)

Notice the Italian parsley has the symbol of the Trinity, unlike the more familiar curly parsley.

Looking for Lily

It seems that Lily never made it, poor thing. Lily; beautiful living through faith is a magazine in my premiere issues collection. For some reason, I didn't code the template of that blog to alert me when there were comments. Maybe I figured no one would comment? Anyway, that entry has had more comments than any other because people are looking for it. Because I need to start cleaning out (I should write a Thursday Thirteen meme on my odd ball collections, some of which have only 2 pieces)--and my first issue hobby which used to fit in the back of a closet until the mid-80s, is totally out of control. So the most persistent one will get it. She e-mailed and left a Facebook comment, plus a comment at the blog. The problem with sorting and arranging them either by size or topic is I always open one up and start to read.

Knowing it would be leaving me soon, I decided to reread Lily (I usually don't read my first issues, just examine them for bibliographic data and research the provenance a bit). There's a very nice story about Laurie Smith, one of the TLC channel decorators. So I blogged about that at my faith blog, Church of the Acronym. She compares the goal of home decorating with that of maintaining and enhancing the soul. There's a yummy bread recipe I might copy, too.