Fuck Cancer

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:

Be between the ages of 18 and 44 (once entered, individuals will stay on the registry until age 61)
Be willing to donate to anyone in need
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)

Claire update

by David Anderson| September 25, 20205:00 pm| 69 Comments

This post is in: Claire Updates, Fuck Cancer

Good afternoon everybody.

I just want to give you all a quick update on Claire, my niece.

She is finishing up her second big round of chemo. It kicked her ass. She is exhausted and not feeling too well and she has lost her appetite. Right now, she is getting supportive care to get her stomach stabilized, nausea down and appetite up. The docs are waiting until she is feeling a bit better for the tests and scans and assessments to figure out what they need to do next.

Her parents have moved into an apartment that is about 2 miles from the hospital. They are extremely grateful to all you Jackals as what you have given them has been enough to take this problem off their worry list for a year. I think the plan is for both parents to be based in Philadelphia while grandma and their younger daughter stay in New Jersey so that she can go to school on an as much as normal situation and then visit her parents on weekends. That might be still up in the air.

We have been amazed at the community support (both here and elsewhere). Claire has enough books, and art supplies to fit out several school libraries at the moment. Her parents don’t have to worry about financial toxicity at this time. My sister-in-law is a high school teacher. Her colleagues have donated enough personal days so that she does not need to worry about her job right now. We are blown away.

Fuck cancer.

Claire updatePost + Comments (69)

Claire updates

by David Anderson| September 4, 20204:00 pm| 96 Comments

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

As the week wraps up, I want to give you all an update on my niece, Claire.

She is wrapping up her round of chemo shortly. The technical term that can be used around 9 year olds is that chemo is a butt kicker. She is Philadelphia at the moment and adjusting to the changes and trying to work with whatever her new normal is.

Megan, Claire’s mom, knew that my wife has been coordinating fundraising through a couple of different channels. My wife mentioned to her sister that Dave’s blog community held a stand-alone event for Claire. She e-mailed the back-end recipient link to Megan so that the fund transfer could proceed. I think Megan expected to see enough money for gas and tolls or perhaps a month’s worth of rent. She was shocked at what you Jackals have done for her daughter and her family. You all have raised a year’s worth of rent plus gas and tolls plus plentiful hospital coffee plus several series of books that Claire wants to read plus who knows what else.

Thank you! Thank you! Thank you!

Claire updatesPost + Comments (96)