Phil is blooming

 Our son Phil had a good friend, Sonja, who was battling breast cancer as he fought glioblastoma. They spent a lot of time talking/texting and she would visit him in his home.  She planted an azaelea tree near her new home when he died, and called it "Phil."  This year Spring is early, and it's throwing out a lot of color. She writes:

“Phil” is coming along…I can’t help but think he may be holding out for Sunday to be in his full glory, which, of course, would bring another round of tears to my eyes, as that will be 4 years since he was called home.

 
Not a single day goes by that I don’t want to share something with him that I saw, heard or experienced, to hear his wisdom, and/or laughter, on whatever it was that I wanted to share…I really miss my dear friend a lot…sigh."

 

The last day, September 30, 2019

With the change to my new computer and Windows 11, some of my e-mail folders didn't transfer, but I don't know why.  Fortunately, some old letters I wanted to keep did, and I found one from our very last day of life as we knew it.  September 30, 2019.  The next day our son Phil had 2 seizures, was hospitalized and diagnosed with stage 4 glioblastoma. But when I wrote this his life and ours was continuing as usual, not knowing what was to come. 

"We’ve been eating dinner on our lovely deck almost every evening since we returned to Columbus on Labor Day, but it just may be too warm this evening.  We’ve also been enjoying sleeping with the windows open, but that will probably not work tonight. I love hearing the train in the distance. 

I’m learning all the buttons and features for my new car, a white 2019 Pacifica, which is the most recent version of the Chrysler van.  It has keyless entry which is very nice, but I have to be careful.  I’d love to have that feature on my house door for when I’m carrying in the groceries. We’re still waiting to get the owner’s manual, and don’t know what some of the bells and whistles are for.  I can look on-line but there are 718 pages, so I don’t want to print the manual.  We also have a free subscription to Sirius radio, but it seems now days you need a smart phone in order to live in our society, so I’ll have to wait until Phoebe has time. And for the umpteenth time the street is torn up and we have no water.  I’m not sure why Kenney Rd. has so many problems, but it does. 

Last night we had our UALC Bible study group here for a meeting and dessert—pumpkin pie and ice cream.  It’s such a nice gathering, and I always enjoy them.  Howard and Betty are leaving Thursday for Ireland, and both have significant health challenges. Two years ago they went to Scotland and arrived in the U.S. (Houston) during the hurricane, and were stranded there for 5 days.  Dave and Donna used Phil as their dog sitter last month, and were so thrilled, she just gets weepy when she talks about him.  She said she didn’t know a bachelor could keep his home so clean, and their dog just loved him. David had tripped on a curb when getting his driver’s license renewed, and had a black and blue face. We celebrated his 81^st birthday.  One member will be having surgery for liver cancer and her first grandchild around the same time.  And Sunday School class is similar. We have about 40 and a goodly number are 70+.  Lots of changes going on at church, which is always hard on the older folk who like things to stay the same. 

And we’ve had several deaths.  Our best man in our wedding, Tom Moir, of Indianapolis died in late August so we drove there on the 4^th for the funeral.  He’d been a part of Bob’s life since elementary school. We also went out for lunch with some other guys from their "Slobs" high school group. We had a really good visit with Bob’s family and spent the night in their new “shared” home (4 generations). A busy place with 3 dogs.  

We went out for our anniversaries and my birthday with Phoebe and Mark.  Had a lovely time at a restaurant in Grandview. On Saturday Phil and I went back to our old neighborhood and had lunch at the Chef-o-Nette.  When she was in kindergarten and Phil in pre-school, he and I used to go there, grab a snack and then pick her up at the school across the street. 

Bob’s brother is recovering from his emergency intestinal surgery in August while they were travelling to California from Arizona, and when Bob called recently he was vacuuming which we thought was a good sign. It’s been a very slow turning around. 

We’ve got a nice trip coming up on October 9, but mainly here in central Ohio. It’s with our Conestoga group, which sometimes means a little walking or stairs, so I’ll just have to see how that goes.  Sometimes old, historical buildings don’t have elevators. 

Stay safe—and cool."

Tribute to Phil from his friend Sonja

 Sonja and Phil went through cancer treatment together. She has survived and moved to a lovely 19th century home in central Ohio which she has lovingly furnished with her antiques and pets. She's a huge Civil War fan.  Today is the second anniversary of his death, and I saw this on her Facebook post today, April 21, 2022.

"There is a huge hole in my heart, that was created when God called you home 2 years ago, on this day. It still hasn’t healed yet, and sometimes I feel like it gets bigger.

 
I find myself wishing that I would see a message from “Tripod” (still one of our funniest names ever created for you) pop up with a “can you talk now?” I sometimes cry still, when the 4pm hour rolls around, as that is when you would call after work, and we would have our marathon conversations filled with laughter, sarcasm, and wisdom…what I wouldn’t give to have you rocking on the front porch with me, having one of our conversations, and enjoying our pure, deep friendship. Damnit, I miss you, Phil!

The Bruces gave me the honor of speaking about Phil, at Phil’s memorial service 2 years ago, these are the words I spoke."

 

  

He never became an old man

Blogs are strange creatures (writings, essays, memories).  There are methods to check up on the people "following" my blog, and from them, to look at the other blogs they are reading. Birds of a feather, apparently. You only do this if it's a slow day like New Year's Eve afternoon and the food is all prepared for dinner with friends, one of whom has dropped out due to quarantining for Covid.  So that's how I happened to read the final post of a blogger whose main fascination was the nitty gritty of writing--hyphens, semi-colons, commas, and citations.  He was a copy editor for the Washington Post and wrote things like this in his job, and then wrote about it in his blog. He didn't necessarily like the changes he had to use.

"mic
Not mike, in a change from long-standing Post style, as the short form for microphone. Try to avoid inflected verb forms, but use apostrophes and write mic’ed and mic’ing if they must be used." 

The last entry in his blog in 2017 was written by someone else--he had died of the cancer he'd been writing about for less than a year--Intrahepatic cholangio carcinoma, stage 4 (cancer of the bile ducts). On August 2, 2016 he wrote:

"And isn't it lucky to have some warning, at a relatively young age and with my mind intact? Not all causes of death work that way -- I could have been run over by a car. This way, I have time, maybe a little and maybe more than that, to take it all in. To savor the little things. I get weepy now when I see trees and cardinals and cardinals in the trees. Am I really missing all that much if I never get to be a doddering old man?

Speaking of smug boasts, have I mentioned that I can swing neither of my cats without hitting a world-class cancer center? I chose one of the very best: Johns Hopkins is less than an hour away, with a satellite even closer to home at Sibley Memorial Hospital (SMH, as in "shaking my head"). I've since learned that "my team of specialists" is a phrase that doesn't sound nearly as good as you think it's going to, but still, I have a team of specialists. And that team has a plan. I've started chemotherapy. Soon, there will be radiation, in the form of teeny-weeny little beads sent directly into the diseased area.

In other words, as lucky as I am to be escaping doddering-old-man status, maybe I'll be really lucky. Maybe I'll end up a doddering old man."

Bill died on March 27, 2017. Yes, he really did want to end up a doddering old man. He had the same hopes and trust Phil did in his "team" and I'm sure they said the same encouraging words, all the while knowing how grim the future looked. Phil was close enough to the east side Zangmeister center near St. Ann's he could drive himself (although it was very unsafe), in fact he did until they cut him loose and assigned him to hospice. He was so shocked he kept trying to call "chemo-doc" as he called her (difficult foreign name). He never got through.

Advice for cancer patients

 Yesterday I decided to repack some of Phil's things in nicer boxes, and then to put the sympathy, get well, and thinking of you cards, notes and letters inside the boxes. There were well over 200 of those.  Of course, then I had to pause and reread them, which is sort of kick in the stomach, but I remember the comfort they brought us in the Spring of 2020 and when he died in April.  One is particularly worth sharing because it's good advice for cancer patients.  It's from his cousin who is 12 years older and was a great help to us in filing the paper work for social security disability (although the first check didn't arrive until after he died).

"I was hoping to be able to find words of strength and encouragement that I could share as you deal with all your health challenges.  But it's hard to find anything profound and helpful to say, though I wish I could.  I had cancer five years ago and it's a long, lonely journey in many respects--no one else can really understand what you're going through, even when someone has had cancer themselves. So I mostly just wanted to tell you to hang in there, keep fighting, and don't shut people out.  I wanted to do everything alone, and just be alone, and in retrospect I wish I'd let more people in and had been able to be more welcoming of the support.  At least more welcoming of the food people offered that we kept turning down!

My one cancer survival tip is to tell you to laugh every chance you can get--not an easy task on the days when it's hard to even get out of bed but it's worth creating every possible opportunity to do so.  For months I watched only comedies and comedy specials on TV.  I rented ridiculous movies, watched every stand-up comedian I could find, and went to every funny movie I could go to.  I was the only thing I enjoyed while going through treatment.  I'm sure the endorphins that laughter produces helped--but mostly it just felt like an escape and respite from doctors and hospitals and all the people hovering over me and all the cancer talk.

Completely unrelated but I also, for some reason, enjoyed putting together jigsaw puzzles--although not sure that's something you'd like.  I sounds pretty old-fashioned and dull (although as the most elderly of the Corbett cousins I'm sure it's my duty to share old-fashioned ideas), but I found it very soothing.  I was such a concrete and orderly thing to do, when everything else seem chaotic and out of control--I knew how to start with the edges, how to organize the colors, how to finish, how to rip it up when I was done.  And best of all I could do it even when my brain was foggy."

And she included Rolling Stone's list of the 25 funniest movies of all time.

Health equity?

Demands for "health equity" for racial and ethnic groups is a push for more government control. The CDC reported in 2014 that the 5 top causes of death were diseases primarily of personal behavior, 1) diseases of the heart, 2) cancer, 3) chronic lower respiratory diseases, 4) cerebrovascular diseases (stroke), and 5) unintentional injuries. These are most often a result of obesity, smoking, drinking, drugs, lack of exercise and other risky behavior. HIV rates are still very high among young black men who have sex with men, and CDC says risk factors are poverty, high rates of unemployment, and cultural stigmas. Doesn't mention risky sex. I'm no doctor or researcher, but any poor, unemployed man who doesn't have sex with men will not be at risk for HIV.  The costs of unintentional injuries are huge--motor vehicle, drugs, suicide,  work, falls. The burden on employers and society in general runs in the billions of dollars annually. . . $1,097.9 billion 

Potentially Preventable Deaths from the Five Leading Causes of Death — United States, 2008–2010 (cdc.gov)

How Many People Die From HIV/AIDS Each Year? (verywellhealth.com)

Health Risks of Overweight & Obesity | NIDDK (nih.gov)

Societal Costs - Injury Facts (nsc.org)

You don’t have to go 3,000 miles to become a missionary

Apparently my subscription to Magnificat lapsed a month, and I didn’t get the August 2020 issue, so I decided to reuse the August 2019 issue.  This morning’s reading (which I don’t recall reading last summer) included a story about Rose Hawthorne Lathrop, daughter of Nathaniel Hawthorne.  I’ve always had a soft spot for him, even though I’ve only read a few items by the popular 19th century American writer.  I remember him for the 4 titles in the deck of cards “Authors” a game which my mother and grandmother encouraged for slow Sunday afternoons at Grandma’s house at her farm near Franklin Grove, Illinois.

Rose was the daughter of two prominent, socially connected families, the Hawthornes and the Peabodys. After she married George Lathrop, also a writer, the couple converted to Catholicism. Later his alcoholism which worsened after the death of their only child Francis, caused them to separate, but she never stopped caring and praying for him.  I haven’t read enough about her life to find out what led her to care for impoverished cancer victims, but that’s the direction of the rest of her life. One article I read noted she was a friend of Emma Lazarus, the poet, who first introduced her to the horrors of 19th century poverty.  At first it was just her working along for the cancer victims, then another volunteer, and eventually, she was allowed to establish a Dominican order,  Servants of Relief for Incurable Cancer. 

". . . service to Christ's poor did not simply mean that this lady of culture, education, and social status would put on an apron and offer gifts from her abundance. She decided to live among the poor, to beg for them as they did for themselves, and to establish a home where they could live in dignity, cleanliness, and ease as they faced their final days on earth . . .There was to be no class system, no 'upstairs/downstairs' for her residents. She and her religious sisters would be the servants. The residents would be the object of all their care and concern."

There are 3 houses, and one is in Atlanta, Georgia.

https://georgiabulletin.org/news/2018/12/family-chaplain-speak-of-hawthorne-dominicans-life-changing-oasis/

https://www.newenglandhistoricalsociety.com/rose-hawthorne-daughter-nathaniel-becomes-candidate-catholic-saint/

https://www.catholiceducation.org/en/faith-and-character/faith-and-character/the-remarkable-rose-hawthorne.html

Cancer treatment checklist

I found this at a blog written by a woman who had metastatic breast cancer. Due to HIPAA and Phil's reluctance to ask his family for assistance, we were helpless in helping him battle his disease. He was brave, determined, combative and very angry. He'd already had a stroke (retinal occlusion) and had a number of health problems which he chose to ignore. After his death I found a letter written by a cousin suggesting that he not try going through this alone, to accept help. He disregarded her, too. The mistakes I've seen were compounded by a very small thing yesterday when we received a sympathy card from the doctor he trusted most and told us never to question her advice. His name was wrong in the card! Doctors, too, are helpless if a patient is noncompliant. And he definitely was. But he had amazing faith in her, not withstanding.

Lessons Learned Checklist:

1. Expect mistakes from your health provider;

2. Ask critical questions at every visit. Take a written list of questions in order of priority. If you get home and realize something is not clear, contact your doctor again;

3. Get a friend or family member to serve as your advocate;

4. Communication between doctors is absolutely critical. If a Radiology report indicates possible metastatic disease or something equally alarming make sure you get a definitive diagnosis. Rule out the worst-case scenarios. Make sure the doctors involved have talked;

5. If you aren’t confident about the doctor’s diagnosis, ask your doctor to review your records with colleagues to see what might have been missed;

6. Get a second opinion;

7. Choose doctors who take time and listen. Ask for a copy of the doctor’s notes to ensure your issues are documented properly. This also ensures the doctor heard what you said;

8. Ask specialists to take a “fresh look” at your case;

9. Make use of hospital patient advocate resources without delay.

Kidney Cancer organization honors Ann Hull

Today we are honoring our friend Ann Burkhart Hull, who passed away on Saturday evening after a courageous battle with aggressive kidney cancer. All of us at KidneyCAN send our sincere condolences to Ann's husband Jason and their three children: Ellie, Amy, and Joey.

Ann was a truly special member of our community. We remember her positive spirit and sweet disposition in the face of daunting treatments. She was active in the online SmartPatients group and was known for her kindness and support of other patients as they navigated their own diagnoses and treatments. Ann was an inspiring voice for all of us at our DC Advocacy Days, where she and Jason spoke to congressional representatives about the need for kidney cancer research funding.

Brenda Knapp, KidneyCAN Treasurer and co-founder, writes, “From the first time that I met Ann at a Rock the Cure fundraiser in Virginia Beach, I could see she was a fighter and wanted to make an impact on kidney cancer. I was always impressed by her positive, can-do attitude and her wonderful smile.”

Ann faced her battle with grace. In a recent Facebook post from the hospital, she encouraged us to “Take a minute today to enjoy your view from wherever you may be!” Today, for Ann, we will try to do just that.

Rush Limbaugh has advanced lung cancer

I missed the announcement, but heard it later on 98.9 FM. I went back and read his website, and it was quite moving.  He’ll have substitutes but hopes to continue.  Our recent experience with our son and his stage 4 glioblastoma tells us he’ll need all his strength and determination to work on the cancer, the treatment and the side effects, rather than his career.  Rush used to be a cigarette smoker, but quit a number of years ago. He often used the phrase, “My formerly nicotine stained fingers,” when ruffling though his papers.  I pray for a complete recovery. He faces a very rough time.

I did hear an amazing story yesterday on the Rush show while in the car when a child called in and told of a 7 week trip her family took to see all the locations mentioned in the history books he's written for children. Rush was deeply touched by her account, and I’m assuming it was before the announcement since it was shortly after 12 noon when he comes on in Columbus.

https://610wtvn.iheart.com/content/2020-02-03-rush-limbaugh-announces-he-has-advanced-lung-cancer2/

Update on our son

On October 1, 2019, our son had several seizures and was diagnosed with glioblastoma.  He has endured a lot in the last four months including side effects from the standard treatment for this disease, surgery, radiation, chemotherapy and steroids to reduce brain swelling.  Thursday he had another MRI and today consulted with his doctor.  He posted the following on Facebook.

"Hi there. MRI shows tumor growth. Docs don’t know if this is actual tumor growth, or scan findings are related to swelling from treatment. I’ll continue current treatment plan for 2 months and re-evaluate. Pray my symptoms subside. Love you all.  .  ."

Reflection on Exodus 17:8-13, with apologies to Moses.

In those days, Cancer came and waged war against Phil's brain. Phil Bruce therefore said to his medical posse, "Pick out the best you have--surgeons, nurses, therapists, med techs, hematologists, cardiologists, radiologists--and go out and engage Cancer in battle. I will be standing on top of the hill with the staff of God in my hand."

So the posse did as Phil told them: they engaged Cancer in battle after Phil had climbed to the top of the hill with his family Norma, Bob, Phoebe and Mark. As long as Phil kept his hands raised up, his body had the better of the fight, but when he let his hands rest, the Cancer had the better of the fight.

Phil's hands grew tired so they put a rock, his church, in place for him to sit on. Meanwhile, his family, extended family and close friends--Ron, Keith, Carl, Tom, John, Sara, and many others-- supported his hands, some on one side, some on the other side so he remained steady till sunset. And the medical posse mowed down the Cancer and tumors with the edge of medical miracles swords.

Pray for Sonja and Phil

Sonja is battling breast cancer; our son Phil is fighting a malignant brain tumor.  These "kids" grew up together, attended the same church, UALC, and Upper Arlington High School in the 80s and they are friends on Facebook, encouraging each other. Let's keep the prayers coming.

 

Psalm 92

Today, Psalm 92 came up in my meditation time.

"It is good to give thanks to the Lord,
to make music to your name, O Most High,
to proclaim your love in the morning
and your truth in the watches of the night,
on the ten-stringed lyre and the lute,
with the murmuring sound of the harp."

Our son Phil enjoys giving thanks to the Lord with his church's praise team. He loves the music, being part of worship, and the friendships he's developed through the music.

I wasn't sure what a 10-stringed lyre looked or sounded like, so here's a video.

https://www.youtube.com/watch?v=nbmyggia4qs

Phil had brain surgery for a malignant tumor on Tuesday and was released from the hospital on Friday evening.  He had a good night at his home, and is working on his routine. We’re hoping the guitar playing will be therapeutic for his right hand which is weak.

With a little help from friends

We'll be heading to the hospital in a few hours to visit our son  as he continues down (up?) the difficult road after brain surgery on Tuesday. We've been overwhelmed with the prayers and kindness of his friends, our friends and total strangers. A neighbor I don’t know well just dropped by with a quiche for supper.  It is a huge comfort!

So I want to tell you a story from way back--maybe 1987, don't remember for sure. As the mother of teens, so close in age and so beautiful people used to think they were twins, I was at my wit's end and couldn't pray. So in addition to feeling like a total failure as a mother, I assumed I wasn't being a very good Christian either. No prayer could slip pass my clenched teeth.

At church one Sunday I ran into Judy Gibeaut and in about 30 seconds summed up my rage and frustration. She gave me a hug, told me not to worry about praying, that she'd do it for me so I could just focus on putting one foot in front of the other. I think she did call it intercessory prayer, but whatever she said, I've never forgotten it.

I'm not doing much praying since October 1 when this hit us like a ton of bricks, so we're relying on others. After so many years of Sunday worship, baptisms, Bible school, Sunday School, funerals and weddings, I think I've got the "Lord's Prayer" [Our Father] down pat--not very good at memorizing. Tertullian, 2nd-3rd century theologian, wrote that the Our Father was a summary of the Gospel so we can cover a lot of territory with that!  https://sites.google.com/site/aquinasstudybible/home/matthew-commentary/tertullian-on-the-our-father

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.

HPV and Oropharyngeal Cancer

https://www.cdc.gov/cancer/hpv/basic_info/hpv_oropharyngeal.htm
Last autumn and winter I took some Coursera free classes in the medical field.  One I finished—medical statistics, and one I didn’t—gut microbiome. It was just too gross.  So I continue to get announcements to entice me to try again, something in the medical field.  Today it was HPV and Oropharyngeal Cancer.  I knew only a little about it—with the increased acceptance of oral sex, it has put many in danger of a disease they couldn’t have imagined in the pre-Monica days of “it’s not really sex.”
Here’s what CDC says it is, without ever suggesting that oral sex not be practiced:
“HPV is the most common sexually transmitted infection in the United States. Of the more than 100 types of HPV, about 40 types can spread through direct sexual contact to genital areas, as well as the mouth and throat. Oral HPV is transmitted to the mouth by oral sex, or possibly in other ways. Many people are exposed to oral HPV in their life. About 10% of men and 3.6% of women have oral HPV, and oral HPV infection is more common with older age. Most people clear HPV within one to two years, but HPV infection persists in some people.”
Because it takes years for the problems to develop, CDC recommends that 11- to 12-year-old boys and girls get two doses of HPV vaccine, although there are no studies to show it actually prevents these cancers
This fact sheet is a little more graphic and explicit.  https://www.cdc.gov/std/healthcomm/stdfact-stdriskandoralsex.htm

Oregon offers free abortions for all--even illegals

Oregon Governor Kate Brown signed a bill which makes abortion free for every resident of the state by mandating insurance companies not charge a co-pay for an abortion. Additionally, the bill sets aside $500,000 tax payer dollars to pay for the abortions of illegal immigrants.

She'd better set aside massive amounts for counseling and increased cancer rates. In Finland the suicide rate among women who had undergone abortions in the prior year was three times higher compared to women in the general population and six times higher compared to women who gave birth. Induced abortions, particularly with a first pregnancy, increases the risk of breast cancer.

Childhood cancer--a grandmother's guest blog

I first met Carol, her sisters and mother (a Methodist pastor), all bloggers, years ago but only on-line.  Then everything changed for her, including her blog.  Her seven year old granddaughter Lily was diagnosed in 2008 with cancer, and the battle continues after a heartbreaking relapse in 2016.

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Today is September 1st - the first day of Childhood Cancer Awareness Month, and I want to honor my #1 childhood cancer warrior, my smart, brave and beautiful granddaughter, Lily. Lily was first diagnosed with Acute Lymphoblastic Leukemia (ALL) on December 1, 2008 at the age of 7. When she was diagnosed, I wondered how we’d make it through the 2+ years of treatment. It was a hard journey with daily chemo, fevers, hospitalizations, missed school, and missed childhood experiences. However, she made it through and finished treatment in February of 2011. She had a skating party to celebrate. She then had over five years of building back her health.

She went from being behind her peers academically (missing a year and a half of school will do that!) to beginning her sophomore year of high school in 2016 in advanced classes and being an active member of the high school girls’ volleyball team. Then in September 2016, she started feeling unusually tired again, and she had unexplained back pain – back pain that was all too familiar to her. She tells me that she suspected what was wrong well before it was confirmed. Blood tests were done again, and we got the heartbreaking news that she had relapsed. There was less than half of one percent chance of relapse that many years off treatment, and yet it happened. Learning your child or grandchild has cancer is horrible! Learning they’ve relapsed is so much worse!

Larisa – Lily’s mom and my daughter – tells about receiving that phone call confirming the relapse. She had to tell Lily and her younger sister, Sophie. When she went into Lily’s room, Lily said, “It’s back, isn’t it?” Larisa confirmed that it was. Then she, Lily and Sophie hugged each other and sobbed together. They KNEW how bad the treatment had been the first time, and they knew that treatment for relapse would be so much worse. The odds of cure go significantly down with a relapse as well.
Any of us adults in the family would have swapped places with Lily in a heartbeat if we only could have. I begged God to let it be me instead of her. Unfortunately, that’s not how it works. Our only choice was/is to be there for her as much as possible as she travels this terribly rough road.

Lily’s relapse was diagnosed on a Friday, but her oncologist wanted to wait until Monday to start treatment. That meant we had a weekend. A weekend during which Lily had her hair highlighted because she wanted it to look pretty before she lost it. A weekend to be with her friends and family. I asked if Lily wanted a family dinner during the weekend. Lily said yes – as long as we were upbeat and didn’t talk about the relapse. She didn’t want everyone being sad or feeling sorry for her. So we invited the whole family over to our house for dinner that Sunday night. Lily chose the menu, and I bought a bunch of small pumpkins – thinking that decorating them and making jack-o-lanterns would be a fun activity for all the children. After dinner, we took the pumpkins to the front porch, and the children started drawing and carving faces.

Then Sophie asked if it would be okay is she smashed her pumpkin on the concrete walkway. Smashing pumpkins? Well – sure! Go for it! Within a few minutes, all the children - preschool through teens - were standing on the steps and smashing the pumpkins on the walkway. Pumpkin pieces were flying everywhere. Lily mostly watched and shook her head at the silliness. We adults watched and laughed at how enthusiastically even the youngest kids were throwing the pumpkins, but we also understood what was going on. Fear, anger, and uncertainty were being expressed via smashing pumpkins. It was a needed release. When they finished, the kids picked up all the pumpkin bits, and we all went back inside. It is a scene etched indelibly in my memory. The next morning, Lily entered the hospital, had surgery to install a port and receive spinal chemo - and began treatment again.

With her relapse, Lily was faced with another two years of treatment. Right now, she’s about half-way through the relapse protocol. Lily’s body has not dealt well with the new, more aggressive relapse chemo. She lost her hair three weeks in, and she’s gone through some rough and life-threatening reactions to the chemo. One chemo she tolerated well back in 2009, put her in anaphylactic shock this time. So far during this relapse treatment, she has had just about every unusual and extreme reaction in the books – and some not in the books. She has been a frequent topic for discussion at the oncology team meetings at the children’s hospital.

She is participating in a clinical trial (research study) and was randomized to the experimental arm of treatment that includes a new immunotherapy drug, blimatumomab. This drug was not available back in 2008 when Lily was initially diagnosed. The study involves three cycles of 28 days each of continuous IV infusion of the drug. Lily has to wear a backpack that contains the pump that keeps the drug going into her body through her Hickman line 24/7 for those 28 days. Surprisingly, Lily has responded well to the blimatumomab and, so far, her months on it have been two of her less sick months of treatment. The third and final cycle of blimatumomab is the next block on her treatment protocol. She will then have surgery to remove her Hickman line and install a new port. Then she'll continue with the rest of treatment.

She missed most of this past year (her sophomore year) of high school, but kept up with her school work thanks to her school’s amazing teachers who went so far beyond the call of duty to help her. And thanks, also, to the school district’s home-bound program (Thanks, Jojo!). She also took some classes online. She’s now into her junior year of high school and hopes to be able to attend more regularly, but that depends on how she does with the upcoming chemo.

When Lily was in the hospital during the early days of treatment in 2008, she told Larisa that she wanted to do something so other children wouldn’t have to go through such rough treatment. Out of that conversation, the Lily’s Garden Foundation at Vandy’s Children’s Hospital was begun. Lily’s goal was to help raise a million dollars for childhood cancer research. She reached that goal several years ago! Amazing! Lily didn’t stop at a million dollars, though. She continues working to raise money for childhood cancer research. She has become a proficient speaker for childhood cancer research. And there is a lot of exciting research going on right now! I'm very optimistic that Lily's dream of no childhood cancer will someday be realized.

Meanwhile, she still has another rough year of treatment ahead of her. She will finish treatment in September 2018. Incredibly, she will be a senior in high school then. Please continue to keep her in your prayers. She needs every one of them.

Lily was asked, "What can others do that would be helpful?" Her response: "Help bring awareness, and help raise money to find a cure." You can help Lily reach her goal of finding a cure; find out how by looking at her website: http://lilysgarden.org.

God bless you, Lily. You were dealt a rotten hand at age 7 and again at age 15 – and yet you handle it so well. I can't wait for our Northern Lights adventure as soon as you're finished with treatment and can travel again. You are my hero, and I love you to the moon and back!

Cancer relapse in a child, a mom's account

I've been following Lily's story for years.  Her grandmother Carol is a blogger friend--her whole family, the Shaws, blog.  Recently, Lily relapsed after over 5 years in remission (she's 15 and  active in sports and doing teenager things, with tickets and hoping to see Adele). This is very rare after 5 years in remission. This was written by her mother, who posts on Facebook. 

Well, not to sound like a 13 year old but today has SUCKED!!! It started out fine. Lily and I walked some and she did homework. Then she and I tossed the volleyball around which was fun. 

Then she got her chemo. PEG - L- Asparaginase. Earlier this morning the doctor had gone through all the possible side effects especially the risk for anaphylaxis (that is where you have an severe allergic reaction to the point the airways swell making it where you can't breathe). We weren't expecting any reactions since she had a couple PEG doses last time she was in treatment and one two weeks ago. However he warned sometimes they see reactions after a lot of doses.

They started the chemo around 12:30 and within 20 mins I noticed a rash and she was coughing a little. Then literally in a matter of minutes it was a true medical emergency. Doctors and nurses literally came out of the woodwork it seemed. It was extremely scary. She was gasping for breath and couldn't feel her legs and arms. She couldn't talk. They were finally able to get her breathing clearly again after high dose IV Benadryl, Epi and hydrocortisone through her port. She is already on high dose steroids as a chemo so that also helps. She has rested and not felt great the remainder of the day. Not only is the medicine making her feel bad but it was also terrifying. This evening she started having a rash and some heaviness in her chest again so they are continuing with the Benadryl and watching her really closely.

So she won't be able to take that chemo. There is another chemo they will give in its place. The downside is instead of one dose it requires 6 doses. They don't feel she got much of today's dose so they will repeat the entire dose of the other chemo. In order to make up for this dose she will have the other chemo now Friday, next Mon, Wed and Fri and the next Monday and Wednesday. PEG is a regular part of treatment so we will have to do two weeks of three times of week for every dose of PEG she should have gotten from here on out. Complicated however worth it not to have a similar incident.

So they have said we are definitely here until next Monday and then they will reevaluate possibly letting her leave as long as she doesn't have any additional reactions and her blood counts start to recover.

Also, today we found out definitely that she won't be able to go to the Adele concert. Phillip had bought tickets for my birthday back in December for the girls and I--so sweet. We have known since we found out Lily relapsed it would be extremely difficult for her to be able to go, however we were holding out hope that her counts would start to recover and we could maybe get an exception with a mask (we have suite tickets). However, today Dr. Friedman said she didn't think there was anyway we could pull it off. I think we all knew that would be what happened however I had prayed her counts would recover so we could pull it off. We have looked forward to it so much. So I think Phillip is going to take Sophie and maybe a friend and Lily and I are going to listen to Adele's album in her room. However, it was yet another blow of something she would miss out on due to this.

So that is about it. Oh, steroids have kicked in big time in addition to the meds today, so its a hungry, sad, angry time (cancer moms know what I mean). Needless to say Cancer SUCKS!!!!!!