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A Drinking Game, or Readmission to the Bone Marrow Unit

I don’t think I have the words to convey the shocking turn of events that has landed The Teen back in the Pediatric Bone Marrow Unit, a/k/a 5200. I kept thinking of all the humorous ways I could spin this into an entertaining read, as I’m used to doing as a blogger. Then I thought, “Lynne, this just isn’t damn funny.”

An ultrasound this week revealed that The Teen has a large blood clot in her neck. (I could bore you with the medical terminology but I’ll spare you). The cause was likely a series of unfortunate events, including her central venous line, the steroids she takes for Graft vs. Host Disease, and her pre-existing narrow blood vessels due to her Sickle Cell Disease. That last condition was one of the main reasons she was a candidate for a bone marrow transplant to start with – but the good news is that her blood vessels should fully recover within a year or so of a successful transplant.

The bad news is that another series of unfortunate events prevents our medical team from using the anti-coagulant therapy normally used to treat blood clots, at least for right now. That wonky central line, so hated already, and now a huge contributor to the problem, cannot be removed, due to risk of moving the clot. Interventional measures are on hold due to the high risk to The Teen – but would be implemented if the situation gets worse.

So what IS happening? In many cases, this type of clot simply self-resolves (again, I’ll spare you the medical explanation). For now, we watch and/or wait and see. Our family is playing an imaginary drinking game every time one of the many specialists comes in, evaluates The Teen, and then says, “Well, we’re just gonna watch it, and wait and see.” (If you feel super sorry for me, please bring a cocktail shaker and the ingredients for a Cosmo by the hospital, so at least one of us can turn this into a real drinking game…)


On the bright side, The Teen’s new bone marrow is doing what it is supposed to, slowly coming fully to life and working to make all the different components of her blood, at different rates depending on the type of blood cell. She looks and feels a little more like her old self, and is able to work on her virtual high school classes. Some of the lingering side effects of chemotherapy and normal complications following a transplant result in some days being much better than others, but other than being back on the unit for very close observation of the blood clot, and administration of IV fluids and antibiotics, she IS recovering. We remind ourselves that she is getting better, regardless of our relocation back to 5200.

Thanksgiving is The Teen’s absolute most fave holiday, mostly because of the fabo traditional feast we gleefully prepare and consume. What she was hoping for the most was a pass to go home to Winston-Salem for Thanksgiving, even if only for the day. Whether she’ll get a pass to the Ronald McDonald House, much less home, is very up in the air right now, but we remind her that we’ll count our blessings to be together as a family, that she is recovering, albeit slowly, from a transplant, and that we can still gleefully prepare and consume a feast no matter where we are. 

‘Cause that’s how we roll. 

We can’t thank you enough for following our winding path, and the many ways you’ve all supported us along the way. We wish you Godspeed on your own journeys.

Lynne
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I’m publishing our COTA blog updates here as well, for those of you that have said you can’t access them. 

20 Responses to A Drinking Game, or Readmission to the Bone Marrow Unit

  1. Self-resolve – I like that word and I like what it means and I hope to heck that this will be a self-resolving condition. If I were near you I'd probably pull up in a big tanker truck full of cocktails, with a minivan thrift store in tow. My thoughts for recovery fly your way!!!! Our upper lips can only remain stiff for so long. Time for a hot bath and a cigar for your own self – as Sean Connery said in some jungle movie I saw him in (oh, yeah, Medicine Man, how appropriate). Hugs to you and your family. This is only a temporary thing on the way to better days.

  2. Oh Lynne. I can only try to imagine the anxiety and distress you and your family are experiencing. Sometimes, humour is hard to find.
    But love, and great courage and resilience, and making the best of where you find yourselves – all these, you have in spades.
    Sending HUGE love, in lieu of booze. Your Teen is one special young woman, and she will get through this, I am sure of it. xxxx

  3. so sorry to hear about the complication, Lynne. The good news is good! That your daughter is responding so well to the treatments. You must feel on a roller coaster at times. Hugs to all xox

  4. Hi Lynne, I've followed your blog for awhile but never commented. I'm so sorry your family is going through this trial. Please know I have added the Teen to my prayer list and you and hubby too, and hoping you will have a joy-filled Thanksgiving this year, thanking God that the bone marrow is doing what it was designed to do.

  5. Sending positive thoughts, not only for the clot to disintegrate but also for that Cosmo – sounds like you could use a real one.At least you're staying positive, which is the best thing you can do right now. And turkeys can be cooked and eaten on any day of the year when you can give thanks for Teen being able to go home!

  6. I am so sorry to hear of this complication. Hospital visits are marred with those. I am hoping this will be the last for the teen and it will all be positive from hereon in. I am so thankful to hear that the transplant is doing what it should. That is great news.

    Sending big healing thoughts your way and additional strength for the hospital stay.

    bisous
    Suzanne

  7. Oh Lynne. This post brought me to tears. I so desperately wish the Teen could be well enough to have her Thanksgiving. But I am so glad that she has the family that she has. I am horrible with medical stuff, but I know as a mom, it is necessary sometimes. I wish you both strength in the coming months as the Teen progresses to stellar health.

  8. Well Lynne, I'm grateful The Teen's BM transplant is working successfully. As you say, that's what she was there for originally and it's a blessing all that treatment and pain has "taken". Whenever medical professionals make similar flippant comments to The Phoenix, I feel like snapping back "I'm gonna set fire to your $100k car, sit back and wait and see" … I don't drink, but it's my equivalent and gives me some sick pleasure. Seriously though, The Teen is in the right place and being closely monitored by the best. She is in safe hands and with the people who love her the most. Big warm hugs my dear. xoxoxoxo

  9. Ugh, I'm so sorry she's back in – I hope this isn't a long lived set back! I send you many hugs and well wishes and hopes that she can at least get out to the Ronald McDonald House if nothing else!

  10. Oh Lynne, sending the Teen and all your family lots of love and strength. Sorry to hear about the setback. I hope that damn clot dissolves ASAP and stops causing a problem xxx

  11. Since I'm too damn far away to bring the ingredients for a Cosmo, I'm going to have join in the imaginary drinking game. Know that you and The Teen and the entire family are close in my thoughts and I'm praying for your precious child.

    Have a wonderful day my friend … hugz

  12. Oh Lynne, my thoughts are for you and your teen. I wish I could pull up a big cocktail for you, and a big something pleasant of whatever your daughter is allowed to have right now.

    I am so glad that your daughter's transplant is going well, but my heart aches for your family and its endless waiting. Please take care of yourself- from your posts it's clear that you're hardworking, self-sacrificing, and very practical and grounded. Make sure not to deny yourself your fun moments and pleasures, because you're an amazing mother and you need those things, too!

  13. I love the food-and-family aspect of Thanksgiving as well, and while the setbacks make me sad (I guess my good vibes get a little diluted while they're traveling across the country), I'm glad that so many parts of her recovery are going well, and I'm thankful as ever to have you as an internet friend and an inspiration.

  14. Oh man, how rough is that? Sending shrinking/disappearing thoughts to the clot – begone, vile clot! Out, out, damned cloth! Thinking of you, and drinking for you (hee).

Contact Info:

Lynne J. DeVenny, N.C. State Bar Certified Paralegal

Owner & Virtual Paralegal, DeVenny Paralegal Services

Email: lynne.devenny[at]gmail.com

Telephone: 336-582-0003

Inquiries are welcome, with free quotes available.

Meet Lynne:

Lynne DeVenny is a North Carolina State Bar Certified Paralegal with over 27 years of experience working on complex litigation cases, including medical malpractice, personal injury, workers’ compensation, and Social Security disability.

Disclosure: I am not a lawyer and cannot provide legal representation or legal advice.

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