Monthly Archive: April 2016


Donuts for Dinner

24.04.2016 Posted in Uncategorized 16 Comments

A few days ago we got some good news. Lucy’s bone marrow sample, taken in KC, came back 100% donor! Past results have been 99%, which is great, but seeing it go up, to the top, is fantastic! We are so happy that the extra immune suppression hasn’t held back her new cells too much. We celebrated by fulfilling Lucy’s request for a donut, after dinner. Which reminds me, thank you for the appetite prayers! Lucy is on a very, very slow steroid taper schedule, and thankfully we have seen a drop in the ‘roid rages and sleepless nights. She still loves chips, but is finally eating more of everything! She gained two pounds in one week and even ate a few pieces of broccoli one day! On this day of celebration she ate seven toasted raviolis and still had room for her donut, which we let her choose. Sprinkles!



Roller Coaster Rash

19.04.2016 Posted in Uncategorized 7 Comments

I know it has been a while since I posted, but, honestly, I am just so sick of writing and thinking about and looking at “the rash”. I think Dr. M put it best when he called Lucy’s skin issues and ongoing treatment for resolving them a “roller coaster”. After her birthday Lucy’s rash got worse, and brought us back to clinic in STL twice the following week. We started back on an aggressive line up of topical ointments and creams. Instead of spacing out her infliximab to monthly, as originally planned, she got her next dose six days later. She also started back on steroids and eventually bumped her tacro dose back up (we had only made one taper in her dose). So … yeah, the rash got worse. Thank God for modern technology and two of the most amazing doctors on the planet, we managed to get a plan in place for Lucy very quickly. We have been able to email LOTS of rash pictures and discuss thoughts and ideas. Dr. B and Dr. M make us really feel like a team, including us on absolutely everything. Yet still, Lucy is a puzzle ….

Even after the very disappointing re-introduction of the immunosuppressant drugs Lucy’s rash got  worse for a few days. I suspected a medication she had recently started, Bactrim, and the doctors were totally fine with holding it for a week. As Lucy’s skin recovered we started it again and bam, rash. Add that to her staggering allergy list, I guess. Bactrim was supposed to replace Pentamadine, which she reacted to in the KC clinic and had to be stopped mid-infusion. Both are a prophylaxis for pcp pnemonia, a dangerous type of pnemonia most commonly affecting immune compromised people. Lucy must be on this one long term, so we need to find some thing that will work for her. Third in line, atovaquone, or “bright yellow mustard drug”, also brought out The Rash after two doses. I’m not sure what is going on here, but Lucy’s donor may have a ton of drug allergies! I mentioned how great Dr. M and Dr. B are, and how much I value their “team” attitude wih Josh and I because they immediately took my word for it when I emailed (on a Saturday night!) that I thought Lucy was getting a rash from another medication!  Honestly, I hesitated a little before sounding the alarm because it does sound crazy, mostly I sound crazy! Still working on a new plan.

Today, Monday, Lucy’s skin has mostly recovered from the small flare up over the weekend and another prescription will probably be hitting the trash. We will go to clinic in STL this week for labs and hopefully nothing else! I mentioned how dissappointed we are that Lucy is back on steroids and has increased her tacro and infliximab doses. First of all, compromising her immune system puts her back in a bubble, which sucks. We were just getting excited at the thought of peeling off some of her meds, especially the extreme photosensitivity drugs, but that has been pushed back, a lot. Second, I’m afraid for the impact this may have on the BIG goal – curing her cancer. Being very high risk, it would be ideal to get her off immune suppression sooner rather than later, and let those donor cells really take over. Dr. M has assured me that this is all ok.  Finally, steroids are mean! Lucy isn’t sleeping as well, and the roid rages are tough. I can’t even say that her appetite has improved, she just wants chips all day long. Also, her blood pressure is threatening some high numbers, a common side effect of steroids and possibly tacro. We may have to actually add another medication! Despite all this, we are happy with the plan because we have to get this rash under control and just gone, forever. It really doesn’t bother her, but it can not be ignored. 

Lucy was due for a check up and bone marrow biopsy in KC last week (and her skin looked fantastic then, of course). Results are still trickling in, but her marrow looks to be free of disease, which is great news! We hope to hear her chimerism tomorrow.  

Every day is a good day for a tea party!

  When none of the eight varieties of chips are the one you want … you must be on steroids. 
  Lucy had a late procedure, 2:00pm. It was a very long, rough morning at clinic which included a few meltdowns because no one would bring her chips, even though she asked repeatedly! She felt sick when she woke up, probably from the extra long fasting. Violet, and the promise of as many chips as she wanted (she sure did take me up on that offer, until about 9pm!) perked her up later that evening. 
  Having fun trashing Grandma’s living room with microscopic pieces of Lego.


Happy Numbers

1.04.2016 Posted in Uncategorized 13 Comments

Today we are grateful, blessed and full of joy to be able to celebrate Lucy’s third birthday with her. We don’t take a single moment for granted. It has been 99 days since Lucy’s transplant. Day +100 is kind of a big deal in the transplant world … close enough to celebrate!

  Lucy had clinic today for an infusion and labs. I felt really bad that she had to get a stick on her birthday, but it was a fun day. Both girls were spoiled with fantastic gifts, and Lucy was happy to share pink godzilla cupcakes with everyone. The only small damper on our week of celebrations is that Lucy’s rash is back. It looks pretty awful in some areas, but we are very grateful that she doesn’t seem bothered by it. But we still need to get rid of it!  

It has been a week filled with sugar! After the Easter bunny visited our house (there was plenty of chocolate involved), we celebrated Daddy’s birthday on Monday. Followed by lots of birthday treats for Lucy throughout the week.