Emily made it to Maintenance!!!

Stitch, our Survivor!

Nine-and-one-half months – ten hospitalizations – and one recent battle with sepsis later, Emily has finally made it to the Maintenance phase of her leukemia treatment. It was supposed to take four to six months to get to this point but Emily does everything on her own schedule. This (last) part of her treatment should last until July 2014.

Recovering back downstairs on Davis 7 after her 5 day stay in the PICU for Sepsis

When you say the word maintenance, you think of something easy-going – like you’ve gone through the worst part and now it’s an easy coast to the finish.  In this case, it’s not quite going to be that easy.  This phase consists of three-month cycles and Emily will have a spinal tap and intrathecal Methotrexate (chemo injected into the spinal fluid) in months one and two of each cycle.  She will get IV chemo (Vincristine), and an IV antibiotic (Pentamidine), once a month.  She’ll get oral chemo (6-MP) every day and oral chemo (Methotrexate) every Tuesday.  Chrissie gives her the oral meds at home and then she takes Emily to the Infusion Room at U.C. Davis for the IV treatments.  On top of all of this, Emily will get an oral steroid (Prednisone) for five days, once a month.  No one is looking forward to having Emily-on-steroids again but it’s one of the things that will help her beat this.

After no appetite for a week and a 2 lb weight loss, cookies for breakfast, lunch, and dinner are fine by Mommy!

During this whole process, she will get weekly labs done to check her ANC level – the marker of her immune system’s infection-fighting ability.  The doctors want to keep her ANC between 750 and 1500 – low enough that her body won’t fight off the chemo and will allow it to work but high enough that she won’t be constantly getting infections.  If her ANC falls outside of these parameters, the doctors will adjust her oral chemo doses to get it back.

So, this is where Emily – and Chrissie and Jason and the kids – are at right now.  Happy to be in Maintenance and hopeful life will return back to (the new) normal – praying that there will be no more hospitalizations – trying to get ready for the Holidays and wanting them to be joyful and fun – and peaceful.  Thanking God that He is there for them – and that they have this beautiful, feisty little fighter in their lives.  Please pray for all of them — we know

Working on a turkey craft with our favorite Child Life Specialist, Amber

you will – and we thank God for all of you.

 

 

 

Totally un-related (and late) picture! Emily was Minnie Mouse for Halloween.

All the kiddos: Pirate William, Ninja Adam, Jedi Ethan, Minnie Emily, and Kitty Cat Sophia

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5 responses to “Emily made it to Maintenance!!!

  1. Just want to give you all a big hug and let you know I will continue to pray. Maranatha.

  2. So appreciate the updates. Chrissie & family continue to be in my prayers and those of Shirley (Harnar) as well. Since she doesn’t have a computer, I print them and take them to her every week. So thankful for this news.

  3. We faithfully pray for Emily and will keep doing so. So excited for her to be moving on after all she’s endured. What a strong, brave, darling little girl! Praying her through the next stage!

  4. Donna McCartney

    Thank God for her progress!

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