Monthly Archive: April 2017

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Blissfully Empty

25.04.2017 Posted in Uncategorized 3 Comments

Lucy’s 15 month post transplant check up was all good in KC a few weeks ago. Her endocrinology doctor was pleased with her progress; Lucy is is still on the growth charts so no need to worry about growth deficiencies from radiation (yet!). Dr. R is so kind and was thrilled to see Lucy looking so healthy and happy. Lucy’s blood work also looked good, and her blood allergy tests came back much improved. Her IGE levels for egg (which was the one that was dangerously high 6 months ago) came back very close to normal range, so we will probably soon be able to do a food challenge. When it comes to dairy, I have been testing her little by little, on my own, and have noticed significant improvement, almost as soon as she stopped taking the tacrolimus, so I wasn’t too surprised by the blood results. Still, it was very comforting to confirm this improvement. No more epi pen! Lucy also had her port and g tube removed, after a very long delay, during which she was amazingly patient. It still feels so strange, physically, that Lucy has no medical equipment on/in her body. Since she was 5 months old, with the exception of a few months before her relapse, she has had some kind of central line. Three different broviac lines, four or five PICC Lines, one port, one g tube, two extremely breif NG tubes and countless peripheral IV lines. It’s weird not to choose her clothes based on medical device placement; her chest and belly are finally wonderfully smooth and empty. The best news came a few days later from Dr. M – Lucy’s bone marrow results came back 100% donor cells with no evidence of disease! 

  Lucy was NPO since the night before for a scheduled noon procedure time, which ended up being 3:30 PM instead. All day, she had nothing to eat or even drink, and she didnt have a fit or cry at all! She wasn’t happy about it, but she is old enough now to understand. We give it to her straight because she is just too smart! 

  Just out of surgery, no more tubes!
    Having fun at the cardinals game. Lucy got to push the button to open the roof at Ballpark Village. 
 Super fun birthday party with cousins – pancakes and pajamas! Lucy loves her new bike.

   Another milestone – first ponytail! Josh thinks it looks more like a man bun. 
 The pigtail twins helping grandma put flowers on Papa’s stone. We had a beautiful Easter weekend in KC. 

  Dr. Sisters. Lucy has caught the play doctor bug now too. It’s almost like she is now processing it all, as she gets older. Her dolls are getting daily pokes and blood draws. Violet actually seems to be growing out of this phase, so I’m left to the assist Dr./nurse Lucy. Why couldn’t these two go through this obsession at the same time? 

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Four Year Old

1.04.2017 Posted in Uncategorized 5 Comments

It has been a week of birthday celebrations at our house! Lucy is doing fantastic. She is happy, energetic, and charming as can be. Today she turned four years old, and celebrated by going to preschool in the morning, then to a movie, in a crowded theater. We couldn’t even imagine this six months ago. What a blessing!!!

Next week Lucy and I will go to KC for her 15 month post transplant check up, which will include the standard blood and bone marrow testing, as well as a check in with endocrinology and hopefully some allergy testing. Lucy’s food allergies have simmered down significantly. I hope to have blood tests for IGE levels to see how far things are settling, officially, since she is so far off ALL mediations now! At this point, her BMT doctor in KC has approved/requested that she have her port and g tube removed!! Perfect timing for t ball coming up this summer. Lucy has been doing so well, another big change had already happened … she has been seeing a regular pediatrician!! She has started vaccinations, finally, and actually had to go in for an ear infection recently. I’m sure I seemed like a lunatic because I was positively giddy about taking Lucy to the REGULAR pediatrician for some SIMPLE amoxicillin for an ear infection! Even Lucy was like “that’s it?”. We practically skipped out of there!

  

In anticipation of Lucy’s g tube removal we shipped back most of her feeding tube supplies. This pole was left behind and Lucy thought it was the BEST toy! She has no recollection of how much we hated being tethered to a pole! 

  We got VIP tickets to the St. Patricks day parade from good friends. Lucy almost tipped over with all her beads! And she asked to dress like Godzilla, since he is green. 

   
I asked Violet to get Lucy up from her nap and this is how I found the two of them. Sweet sisters!

 
Superhero and villain. Lucy is always willing to play along with big Sis.

   
Happy birthday daddy! The girls picked out some treasures from the dollar store for Josh’s birthday.

 
The big birthday girl! Of course, this clearance sweatshirt, from a cartoon that we don’t even watch, was the big hit birthday present. This girl loves to dress up. Happy fourth birthday Lucy!