Fuck Cancer

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| 36 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 (36)

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)

Holy Motherforking Shirtballs

by David Anderson| August 31, 202012:22 pm| 93 Comments

This post is in: Anderson On Health Insurance, Balloon Juice, Bleg, Fuck Cancer, Open Threads, Readership Capture

Thank you.

That is all I can really say right now.

Thank you.

You all have made life a bit easier for my niece and her parents.

I am overwhelmed and amazed and stunned at how generous you all are.

Thank you. I hope that I never have to come back and ask again as that will mean Claire is in remission and her and her parents will have only the normal worries of life. I knew all of you all are generous as fuck but I never counted on being able to put this ask out before my first cup of coffee and having you all pitch in by the time I finished my lunch.

WOW

Thank you!

As a final note, we’re not going to be upping the goal, even as John has suggested. However, we all will be extraordinarily appreciative of anything and everything you all have given.

Thank you,
Dave

Holy Motherforking ShirtballsPost + Comments (93)

Asking for help for my niece

by David Anderson| August 31, 20207:30 am| 133 Comments

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

Good morning.

In the almost seven years that I’ve written at Balloon Juice, I’ve never made a direct personal ask of the community. Today, I need to ask for help for my 9 year old niece, Claire, and her family.

In July, Claire was diagnosed with leukemia. Life abruptly changed for her and her family. Claire is doing her best to face this physically and emotionally difficult time with bravery and confidence. Her parents, Travis and Megan, and her little sister Paige are still standing in the face of extraordinary circumstances.

Claire has completed her first round of treatment at a local hospital. She recently transferred for continuing care at Children’s Hospital of Philadelphia (CHOP) and will be there for many months. Her family takes comfort in knowing a world-leading institution is providing Claire’s care. However, this change complicates an already difficult situation.

Claire’s care has been and will be covered by her family’s health insurance (I’m on call to battle with her insurer as needed). However there are tremendous costs including parking, food, gas, and lost income which are not covered by health insurance.

We are fundraising, from a variety of sources and networks, to give Claire’s family some measure of relief and worry removal right now, during this difficult and stressful time.

I am asking for help from the Balloon Juice community to achieve one specific goal.

Can we pay the year’s rent for a modest apartment near CHOP so that Claire’s family can be close by, her little sister can come to visit and her parents can have a small place of respite and recovery after spending days and nights in the hospital room with their daughter? We’re seeking to raise $18,000 to cover a two bedroom, 1 bath apartment within a 10-15 minute walk from the hospital for a year. Anything raised above that will be used to help defer other living expenses for the family.

If you can help, I would greatly appreciate it during this scary and stressful time. There is no magic wand to wave that will make my niece better. Some of the best doctors, nurses, technicians, dietitians, and aides in the world are caring for her and monitoring her treatment to maximize her chances. But if we can take at least one source of stress and worry off of her parents’ shoulders, that can help my niece.

Thank you!

Dave

UPDATE 1: Holy shit — y’all have already covered first, last and security. Thank you.

UPDATE 2 ~10:05AM: Half way there… Thank you, thank you, thank you.

UPDATE 3 ~11:30AM: Yinz have kicked in everything except for August and September 2021 rent. WOW!

Asking for help for my niecePost + Comments (133)