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You are here: Home / Archives for Balloon Juice / Bleg / Claire Updates

Claire Updates

Let’s do the math — 20 years and a day of Balloon-Juice

by David Anderson|  January 3, 20222:47 pm| 61 Comments

This post is in: Anderson On Health Insurance, Anniversary Week, Balloon Juice, Claire Updates

Wow, I can not believe Balloon-Juice is over twenty years old.

I was aware of this chunk of the internet during the run-up to the Iraq War. When Watergirl reminded me that the big 2-0 was happening a few weeks ago, I searched the comments and the archives for my first interaction here at the full service cats, politics, rage, laughter, humor, health insurance, geo-political analysis and cooking blog. I think I found my first comment from November 2003 trash talking the Steelers. My next comment was 2006 and then I started to comment here rather regularly after Tim F. highlighted a few things that I had written at other places under names other than Richard Mayhew.

I went down the rabbit hole. And my comments as part of the Jackalariat were under the theme of “let’s do the math to figure out if the desired end state is readily achievable….” And sometimes it was, and often I was a wet blanket on hopes and dreams. I stuck around and kept on pointing out that healthcare reform would be determined by 218-51/60-1-5 so that while Lieberman was a douchebag, the marginal vote in the Senate was either a douchebag or someone representing a state/district that went landslide for McCain and that significantly constrained the possibility space.  Tim and I went to a couple of Steelers games and we kept in contact even as I was switching careers from program evaluation to health insurance.  I kept on reading Balloon-Juice through the first decade until the summer of 2013 where the ACA had been passed and everyone in comments was going “WHAT THE HELL DOES THAT MEAN TO ME???”

And that is an awesome question.  It was a question that I could answer.  So I reached out to Tim, and he reached out to John.  Three days later, I started to write here and I never stopped.

As I have said before, I really thought I would have been done by December 2013.  That was a minor underestimate a million words later.

This place is just fundamentally weird.  I get to geek out on something that fascinates me.  All the other front pagers geek out on things that fascinate them.  And then the comment section in almost every post does its own thing within thirty posts.  And somehow this all works in a community.

And this geeking out has led to another career change to academia and significant policy impact.  The past year, my research has led to West Virginia to change how they instruct insurers to price for the Cost-Sharing Reduction (CSR) benefits so that premiums are much cheaper for most buyers now. California has passed a significant state wrap-around subsidy with details that are directly lifted from a working paper that my co-authors and I are trying to get published at this moment.  The Center for Medicare and Medicaid Services is responding to significant chunks of my research in their 2023 rulebook for the ACA marketplaces.  The Assistant Secretary of Planning and Evaluation at the Department of Health & Human Services (HHS) recently cited a Balloon-Juice post and made “silver spamming” a term used in a federal document.  I can’t even imagine that being in my possibility space from 2013 when I started to write here.

And that is not the coolest part of writing here.  Instead it has been the e-mails with all of the Jackals here as people are trying to figure out the almost impossible to navigate US health finance system. We’ll mutually bang our heads into the wall and then figure out a pathway forward. I know that these conversations have led to people savings tens of thousands of dollars, I know that these conversations have allowed people to retire safely.  I know that these conversations have allowed people to get the care that they need.  I know that we help each other out.  That is the most amazing part of the Balloon-Juice community.  We help each other out.

That still blows my mind. I am still amazed that you all came through to help Claire and her family out with over $25,000 in under a day.  As a quick update, she is doing great.  We saw her and the in-laws over the Christmas holiday and the only thing that she needs to be aware of is that shorts are not always indicated for late December.  Other than that she is a happy, healthy kid who has an interesting choice in hair styles and a need to perform on stage.

I’ve rambled enough but given that this is Balloon Juice, we’re always on topic even if we’re off-topic.

 

 

Let’s do the math — 20 years and a day of Balloon-JuicePost + Comments (61)

Claire update

by David Anderson|  July 6, 20218:28 am| 48 Comments

This post is in: Claire Updates

Good morning —

I hope you all had a wonderful holiday weekend.  We drove up to New Jersey to visit my sister-in-law and her family.  We went to the lake, the kids paddle boarded and I took the youngest two out kayaking for a couple of hours on Sunday and then we watched fireworks.

The conclave of cousins was held in the cardboard box fort which has been the host of all prior conclaves.  The final statement from the conclave of cousins was that ice cream was urgently needed.  We complied.

 

Claire update

The big news was that there was no big news. Claire is doing well. She is getting a monthly blood test. So far, it is detecting nothing. Her cancer is currently in remission and although it has a fairly high relapse rate, each month with a negative test increases the probability that she’ll not relapse. Her family is doing well enough. You Jackals, along with others, helped make sure that they did not experience the financial toxicity that is associated with cancer treatment. Y’all gave them the ability to be with their daughter without worrying about money (too much at least) and for that, I am forever grateful.

Claire still needs to figure out what she wants her next hair style to be, and then she is worried about going back to fifth grade after not seeing her classmates for a year and a half, but those are mostly normal worries of a soon to be fifth grader.

Claire updatePost + Comments (48)

Claire is home

by David Anderson|  February 12, 20218:14 am| 66 Comments

This post is in: Claire Updates, Fuck Cancer

My niece Claire was released from the hospital for the last time for this round of treatment earlier this week. She is at home.  She is with her parents and her little sister and her grandma in a house that is mostly snowed in and overloaded with toys and books and presents.  She is doing pretty well right now considering that she just finished up her 5th round of chemo.  Her numbers are good to very good.

Her parents finished cleaning out the apartment on Wednesday and handed back the keys to the landlord a day early.  They no longer have a place in Philly.

The Balloon-Juice Jackal Crash Pad was heavily used and greatly appreciated.  It was a spot where Megan and Travis could sleep without listening to beeps.  It was a spot where they could breathe.  It was a spot where Megan and Travis could have their younger daughter come down and visit to see mom and her big sister.  It was a refuge.  Thank you!

Right now, the plan is fairly straightforward.  Claire resumes normal on-line learning on Monday. She can probably win the first argument on where the family should order take-out once her appetite fully comes back and her stomach settles.  She can play in the snow/ice/sleet that is supposed to be hitting her house today.

She will have monthly lab work.  If the results are not scary, that is all she needs for several months and then she’ll get a check-in with her oncology team. If the results are scary, something happens and we don’t know what that is.

Claire is homePost + Comments (66)

Claire update

by David Anderson|  January 29, 20214:45 pm| 38 Comments

This post is in: Claire Updates, Fuck Cancer

Good afternoon — I took today off as I have some PTO that expires/disappears soon if I did not use it.  My morning involved testing out a new to me biscuit and breakfast place and then donating platelets.  I’ve been giving platelets a couple of times per month since the summer as pediatric cancer patients like Claire need them.  The Red Cross e-mails me every time they ship my platelets and I think that I’m part of a small group that are sending platelets to a particular patient as five of my last six donations have gone to the same, small hospital in the middle of nowhere.

Claire is doing well all things considered.  She is in her fifth round of chemo and treatment at the moment.  She is getting blood products a couple of times a week which has helped her tolerate the treatment.  As far as I understand, her numbers range from being good to really good.  This and the prior two rounds of treatment have been designed to blast out the unobserved and unobservable cancerous cells.  Assuming the next few weeks go as anticipated, she should be released from the hospital in the middle of February.

And after that, she is in the watch, wait and closely monitor stage of her treatment.  It will have been a very long and tough nine months for Claire and her family.

Right now, what Claire and plenty of kids like her need are blood donors.  If you are capable of donating blood, please do so.  You get to help Claire or someone like her out while also getting cookies.  That is a good trade in my book.

 

 

Claire updatePost + Comments (38)

Claire update for the holidays

by David Anderson|  December 23, 20209:14 am| 46 Comments

This post is in: Anderson On Health Insurance, Claire Updates, Fuck Cancer

Good morning —

Just a bit of good news. Claire got discharged from the hospital late on Monday night after her 4th round of chemo and treatment.  As of last night, her appetite and energy is pretty good.  She’ll get to spend, assuming no setbacks, at least through New Years at her house with her family.  Santa will know where to find her.

From what I’ve been told 4th hand, Claire’s numbers are “good” and stable.  I’m not sure what that means except it is far better than “bad” and “declining” or “not improving”.  After the New Years’ she is due back to Philadelphia for her 5th round of first line treatment.  I think the goal of the 3rd, 4th and 5th rounds of the first line treatment for her type of cancer is to find the hold-outs and 1 in a million cells that are still cancerous and kill them.

One of the things that has made her ability to tolerate these treatment rounds plausible has been blood transfusions.  She has been getting blood products several times each cycle.  A transfusion usually produces significant pain and symptom relief.  Right now, blood is in short supply.  Many centers that typically want to have a three to five day supply on hand are now operating with a twenty four to thirty six hour cushion.  If you want to help Claire and plenty of other kids with cancer, see if you can give blood or platelets over the winter break.  I’m signed up for another platelet session on January 3rd where I can watch a movie and make sure that someone else’s pain is alleviated.

Finally, I am still just blown away by all of your generosity.  The apartment in Philly has been a godsend for Claire’s parents.  My sister-in-law has a respite from the hospital to clear her head, get a good night’s sleep and decompress.  That has been an incredible relief for her especially as they have not had to worry about the immediate financial toxicity of a cancer diagnosis that so many families need to face at the same time.  Whenever I think about this, I tear up.  So again, thank you.

 

 

Claire update for the holidaysPost + Comments (46)

Bone Marrow registration

by David Anderson|  October 16, 20205:42 pm| 38 Comments

This post is in: Claire Updates, Fuck Cancer

For many pediatric cancer patients like Claire who have leukemia or other blood diseases, a bone marrow transplant becomes a critical part of their treatment.  While Claire’s doctors hope to continue to rely only on chemotherapy for Claire’s treatments, changes in her condition and the threat of relapse in the months and years to come mean that needing a marrow transplant could become a reality.  We do know that she does not have a matching family donor.  So should she require a transplant she will have to rely on an unrelated donor and hope that one is available that matches her genetic makeup.  In researching her condition and treatment, Megan and Travis learned a lot about the marrow registry and matching process and just how hard it is to find a genetic match.  It’s a scary thought for them and it also made them think of all the families currently waiting to find a match.

With this incredible community rallying around Claire, we saw an opportunity to not only potentially help Claire but to help other patients in need, by hosting a virtual registry drive.  Patients that do not have a matched family donor turn to Be The Match, also known as the National Bone Marrow Registry, to find a compatible donor.

One thing we were surprised to learn, and suspect many others don’t know, is that no one is tested to find out if they are a match to a specific patient. Anyone who submits their DNA is entered into the registry as a potential donor to anyone in need. The more people who join the registry, the greater the chance of finding a match for a patient.

Join the registry

Visit http://Join.BeTheMatch.org/ClaireStrong to learn more and join the registry. There are a few criteria to join the registry:

  1. Be between the ages of 18 and 44 (once entered, individuals will stay on the registry until age 61)
  2. Be willing to donate to anyone in need
  3. Be in general good health

Less than 1% of people who join the registry will end up donating. The donation process is not painful and you could SAVE A LIFE.

My wife and I have gone through the registration process myself and it could not have been easier. You fill out a few questions online; receive a kit in the mail; rub a couple of swabs on the inside of your cheek and mail them back. That’s it! The first step is visiting http://Join.BeTheMatch.org/ClaireStrong

Spread the word!

Whether or not you are able to register you can still help out by sharing this campaign online encouraging others to register and share. There is a particular need for registry members of diverse backgrounds so the broader the outreach the better. Just share the link http://Join.BeTheMatch.org/ClaireStrong

Thank you for reading this long post and for your continued kindness to Claire and family. We would love to share a little of this energy with other families in similar situations. By using our unique Be The Match link, I’ll be able to update everyone on our campaign success. Thank you.

Bone Marrow registrationPost + Comments (38)

Claire in for Round 3

by David Anderson|  October 9, 20204:10 pm| 42 Comments

This post is in: Anderson On Health Insurance, Claire Updates, Fuck Cancer

Hi everyone —

Just another update about my niece.

She wrapped up Round 2 of chemo and ancillary therapies at CHOP two weeks ago.  She was able to get back home to see her little sister and grandma for roughly ten days. By the time that she had to go back to the hospital for her third round, her lab numbers were looking good to very good and her appetite and energy came back.  She has helped her parents decorate the Philadelphia apartment that you all kicked in for.  There is quite a bit of art work in the kitchen and several boxes of books that will soon be read.

Claire is starting Round 3.  If I understand things right, the goal of this round is continued suppression.  The cancerous cells are not readily visible at the moment in her labs.  This round is to keep it like that.

Claire has had several blood and platelet transfusions during her first two rounds.  The transfusions alleviate pain symptoms and keeps her healthy enough to tolerate the chemo.  Patients with leukemia tend to need a lot of blood products.

I’ve been giving a mix of whole blood and platelets at the local American Red Cross collection center.  I stay local for whole blood as I bleed fast.  They like me as I’m O+ and CMV- so my blood is quite versatile.  I head into Raleigh for a 7:00AM Sunday morning slot to donate platelets.  I reward myself with coffee and hipster donuts afterwards.  I know that my niece won’t ever get my blood donations.  Instead, I’m adding to the pool so that someone else’s niece can get the platelets that she needs.  I’m adding to the pool so that a burn victim gets the whole blood that they require.  I’m adding to the pool so that someone’s grandson gets better and can be swung from one side of the room to the other in a week or two after the transfusion.

Kids with cancer need blood.  The process is not particularly painful and the Red Cross or any other local collecting agency will give you cookies.  That is a good trade; an hour of time to do good while also getting cookies.  That is a damn good deal.

So please, sign-up to give blood if you are healthy enough to

Claire in for Round 3Post + Comments (42)

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