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You are here: Home / Balloon Juice / Bleg / Claire Updates / Claire update

Claire update

by | 69 Comments

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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.

 

Reader Interactions

69Comments

  1. 1.

    Alison Rose

    I’m so sorry that the treatments are so difficult–one of the many things that’s so awful and unfair about cancer. I’m so glad she has a good medical team on her side and such wonderful and supportive family and friends. If prayers are welcomed by the family, I’m sending them along, or just general good thoughts in their place.

    I can’t afford to give much, but if there is an address we can send things to, I’d love to send along a card and note, which will be liberally decorated with dozens of stickers. If Claire has any favorite animals, I’m sure I have some corresponding stickers in my absurdly massive stockpile.

    She and you and the whole family are in my heart <3

  2. 2.

    Nicole

    Thank you for the update.  I’m so happy to hear that the community was able to help with the things that were within our power to help.

    Fuck cancer; sending Claire all the best.

  6. 6.

    Seanly

    Thank you for the update. Good luck and clean test/biopsies for your niece.

    Speaking of financial toxicity, I handle the money in my marriage so the wife didn’t see the impact on our finances. My wife had ALL & had to get a blood stem cell transplant (bone marrow transplant). We had 3 things help us greatly:

    1. Her employer (largest hospital system in Idaho) has a benefit where they advocate on the employee’s behalf w/ Social Security. My wife qualified for a compassionate allowance for SSDI which was about 2/3 of her pay.
    2. Our insurance at the time had a transplant network. If you went to a preferred transplant center, you got $10k in travel & expenses allowance.
    3. My wife’s parents live about 15 minutes from Vanderbilt Hospital which was one of the preferred centers. The house is tiny, but my wife had a room.

    So we got very lucky, but even with all of the assistance we got, her cancer put us behind the 8-ball financially for a good solid 3 to 4 years.

  7. 7.

    WaterGirl

    That’s wonderful news about all the personal days for your SIL, what a relief to not have to worry about your job in the middle of this.

    It breaks my heart to read about Claire.

  9. 9.

    Gemina13

    Fuck cancer sideways with a rusty chainsaw.

    Claire, you kick ass.  You’ve got this!  We’re behind you all the way.

  10. 10.

    eric

    My daughter likely has a different type, but if there is anything she or i can do or say to Claire, just let me know.

  11. 11.

    SiubhanDuinne

    Thank you for the update, David. I’ve been hoping you’d provide a status report, and am just sorry that Claire is going through such a bitch of a time with her chemo. Fuck cancer.

    I’m glad she’s well supplied with books and art stuff, but if you think she’d enjoy cheerful notes — actual mail, with a stamp, addressed to her — I’d be happy to send the occasional card. If you don’t want to share the address where they are all staying, perhaps we could send messages c/o you at Duke and you could forward them on to Claire.

    Hoping that she will be kicking back very soon! Fuck cancer. FUCK CANCER. FUCK CANCER.

  13. 13.

    Steeplejack (phone)

    Is there anything we can do for Claire’s sister so that she doesn’t feel neglected? (Not to say that she is feeling that.)

  15. 15.

    Ohio Mom

    @eric: Oh dear, Rats! and Fuck! What else is there to say?

    If it’s helpful to you, please keep us updated. Else know that we are pulling for you and your family.

  16. 16.

    CaseyL

    It’s horrible that fighting cancer requires half-killing the patient.  With all the advances we’ve made against the disease, it still comes down to that.

    Thank you for the update. Best wishes to Claire.

    Fuck cancer, forward and back and sideways.

  17. 17.

    Gin & Tonic

    I am glad to have tossed my few pennies into the pot, and I am amazed by the outpouring of support here, but I don’t think it takes away anything from that community generosity to say that I wish that in ostensibly the richest country in the world these measures weren’t necessary.

    Not a well-formed sentence, but I’m trying to make dinner at the same time, sorry.

  18. 18.

    Ohio Mom

    Thanks for the update on Claire.

    Sorry she’s having the stuffing knocked out of her but I am also assuming the doctors have seen this all before and will be successful in helping her feel better in short order.

  21. 21.

    J R in WV

    Thanks for the update, Dave. Sorry she is feeling the consequences of harsh treatment options, hope she recovers from that in good time.

    So glad we have an opportunity to help!

    @eric:

    Eric, also shocked by your news, hope so hard she does well going forward~!!~ Do keep us posted as well.

  22. 22.

    Gvg

    My chemo knocked me out each time, but the infusion center was giving me drugs to reduce the reaction first. It amounted to liquid Benadryl. Side effect is it made me sleepy for several days which was good, because then I could skip feeling miserable from the actual cancer drugs.

    is Claire trying to do school work on a normal schedule? Because that would have been really hard for me. I kept working, but took days off. My treatments were every 3 weeks and each one took a few more days to recover. It also cut my endurance. After a few rounds I learned to work half days. If I tried to push to get some task done, just a little more, I would have a backlash headache that knocked me out for days. Gently lasted longer than pushing. So if she is trying to do school, I recommend not staying on a normal schedule, but follow the pattern of her treatment cycle.

    its way too young to have to endure this.

  24. 24.

    rjnerd

    Thanks for the update – One small token of resistance – We gave the infusion pump a name, so we could impugn its character properly.  (two of the regimens my wife received had her on a portable pump at home for 48 hours, after the all-day session at the clinic)

    Anyhow, it was dubbed (and a suitable nameplate made) “Vlad the infuser” after how pale and weak she was after it did its thing.   The pharma tech who made up and installed the drugs came out to shake her hand after seeing it.

    Another hit at the clinic, was the “My Oncologist does my hair” T shirt.

     

    Last month would have been my 25th straight year fixing bikes for the Pan Mass Challenge, an event that raises money for Dana Farber’s cancer research.

  25. 25.

    Bodacious

    Can I just thank YOU? I almost dread clicking blogs these days because every freaking day brings more crappy news. *THIS* makes me feel hopeful for your niece and her family, and being able to help just a little gave me a boost.  So, thanks for letting us help just a little; it’s good for the soul.

  26. 26.

    Mary G

    @eric: If you need anything we have to give your daughter as well, please don’t hesitate to ask. Have added her to my support list even if it’s only thoughts and prayers. That we really mean.

  28. 28.

    CarolPW

    @eric: Is my memory correct (although my brain seems to be pudding these days so could be wildly wrong) that you and Imm crossed paths when the Imp and your daughter were being treated?

    Correct or not, my earnest wishes for you both as well as for Claire and her family.

  29. 29.

    thalarctosMaritimus

    @eric: Here’s hoping for all good outcomes for your daughter.

    It’s generous of y’all to reach out at the same time you’re going through that. It’s one of the reasons I love this community.

    I’ll hold good thoughts for you.

  30. 30.

    eric

    @CarolPW: you are correct.  we are in the second year of treatment with an end date in june/july next year.  she is doing well, with very good prognosis (T-ALL).  the treatment this past tuesday hit her hard, but she is strong and full of spirit.  got full head of hair back.  the virtual learning is a real godsend for us so we dont have to freak out every time she goes to school, especially in cold and flu season.  small victories.

    thanks to all of you!   wonderful people with oversized hearts for people and animals alike.

  32. 32.

    lowtechcyclist

    @Gin & Tonic:

    I am glad to have tossed my few pennies into the pot, and I am amazed by the outpouring of support here, but I don’t think it takes away anything from that community generosity to say that I wish that in ostensibly the richest country in the world these measures weren’t necessary.

    Seconded. It shouldn’t come down to whether one had a community like this to get a helping hand from, or (thinking of Seanly’s wife) whether your insurance had just the right benefit to at least somewhat help out with costs of an unexpected malady.

    Every other advanced country has been able to do this. Would be nice to catch up sometime.

    Meanwhile, sending up prayers and healing vibes for Claire.

  33. 33.

    CarolPW

    @eric: Hair comes, hair goes, hats are good. This has been a very long haul for you guys, and I’m so very happy you are closer to an end date even though it still seems so far away. I’ve done the cancer stuff, can’t even imagine having the covid precautions and fears on top. Maximum respect!

    If I had started losing my hair (long enough to sit on) during treatment of my first breast cancer, I was going to get a Mohawk and dye the remains purple. It’s funny, I’m glad I didn’t lose my hair but sort of regret missing out on the purple part.

  34. 34.

    MomSense

    I volunteer to make hats for Claire, Eric’s daughter, people who shave their heads in solidarity. We can figure this out. Maybe David Anderson can connect us.

  35. 35.

    Ruckus

    A child going through cancer and having chemo is unbelievably tough. My sister went through 6 yrs of surgery and chemo and in the end it still got her. I’m glad that Claire is getting great care and I hope for the best.

    Will say, as a participant in the entire cancer ordeal, FUCK CANCER. I’m lucky mine was caught earlyish and was a slow growing thing. I still have to get tested every 4 to 6 months and going on 4 yrs after treatment those will last quite likely the rest of my life.

    Once again FUCK CANCER.

  36. 36.

    stinger

    Thank you for the update, David. Best wishes to Claire and little sis Paige and mom and dad and grandma and aunts and uncles, and good on ya to the colleagues who donated their own personal days. Most of us can’t do anything directly to help out medically, but we can be as good to each other as possible.

  37. 37.

    sab

    Thanks for the update. Finally some happy news. I am proud to be a jackal community member.

  39. 39.

    Ohio Mom

    Only two years ago? I thought Claire’s treatment was during the halcyon Pre-Covid years.

    At any rate, it’s good to be reminded that Claire’s treatment was successful and that her family’s life continues on in health. I hope she found her water shoes.

  42. 42.

    Nicole

    Thank you so much for the update.  I’m very happy it’s good news and wishing Claire an excellent time at summer camp.

  45. 45.

    Kristine

    Thanks for the update. Good news has been in short supply of late, and this is the best kind. I hope summer camp is a blast.

  47. 47.

    Percysowner

    I’m so glad she is doing so well. I hope she had a wonderful time at camp.

  48. 48.

    lowtechcyclist

    Thanks for the update – so glad to hear that Claire and her family are doing well! Wishing her a great time at summer camp!

  50. 50.

    Ladyraxterinok

    So glad she’s doing well.
    Thank you for the update

    I’m sure she’ll have a great time at summer camp. My times at summer camp were some of the best experiences of my life

  53. 53.

    satby

    Wonderful news and continued recovery and best wishes to Claire and all her family, including her loving uncle.

  55. 55.

    Professor Bigfoot

    Brilliant news!

    They do good stuff around this joint, even if they’re a bunch of jackals.

    Yay for Claire and her peeps!

  56. 56.

    Old School

    Nothing makes me click “Next Post” faster than seeing it is a Claire update.  How great to see things are going well.

  58. 58.

    stinger

    What excellent news! I hate to pry into the personal life of a little girl I’ve never met, but I do think of Claire and her sister and family often, so thanks for the periodic updates!

  59. 59.

    Wombat Probability Cloud

    Yay! Thanks for the good news. Hard to believe it’s been two years.

  60. 60.

    Lobo

    Worrying about water shoes should be the main worry of every kid!  Great to hear the news.  Best going forward.  :)

  61. 61.

    Tim C,

    “Claire’s big worry right now is trying to remember where she put her water shoes as she has to pack them for summer camp that starts today.”

     

    Damn Straight!

  62. 62.

    dnfree

    Thanks for sharing the good news!  It was money well-spent (much more effective than some of my political donations that year), and your continued presence and informative posts are much appreciated.

  66. 66.

    Mel

    This made my week. What wonderful news! Wishing everything beautiful and bright and happy to Claire, her sister, her parents, and to you, David.

    Here’s to her having the very best summer a little girl can have!

  67. 67.

    StringOnAStick

    Excellent news!  Her only worries should be stuff like missing water shoes and I pray it stays that way. Chalk up one for modern medicine!

  68. 68.

    Asparagus Aspersions

    In the seemingly neverending swirl of madness, this is SUCH a bright spot. I’m so happy she is doing well. All the best to Claire and her family from a faraway jackal.

  69. 69.

    Antonius

    Thanks for the update, so glad she’s doing well and that the nearby apartment really helped

Comments are closed.