Tuesday, March 29, 2011

bullet-points for this girl who loves lists

Okay, I am certain I am going to miss something in this update but I will give a good try.

Today was the planned Care Meeting. And can I say first that I never wish to have completed college until I am sitting in a meeting with a man with a medical degree who cannot be much older than myself. Seriously, if my daughters were not so amazing I would feel like I had been just sitting around and twiddling my thumbs for the last 7 years or so.

But I digress. The meeting went well. Thankfully, I have a good rapport with the oncology team as well as the multiple specialist working on Pipers case and I was able to maintain my pride and pepper them with questions. I am really good at questioning authority, you see. Ask my father.

I'm going to have to break this down into bullet-points only because I really like a good list.

- Chemo: this is being held. They want Pipers intake to be as simple as possible as they muddle through possible allergies and causes. Hopefully they will begin again before I lose my own hair from worrying about the effects of no chemo every night.

- Her CMV levels have dropped to 1300 (remember she was at 5.5 million when diagnosed with CMV back in January) and Dr. Shores is confident that until she completes her treatment of leukemia in September that this is about as good as it gets. She will not get any more Cytovene unless her weekly blood tests show her CMV levels rising again.

- The allergist is going to do a number of blood tests as well as allergy pricks to determine what she is allergic too. He was able to tell us that she is a 4 as opposed to a 1, which means that whatever she is allergic to, it is something she reacts to more like we react to poison ivy as opposed to the immediate reaction some have to peanuts. Testing begins tomorrow.

- Dr. Siripkin is pleased with the much decreased volume of diarrhea and the erradication of blood and mucous in them. He is keeping her on "gut rest" for 4-6 weeks. Oh. My. Lord. Thankfully she is drinking the vanilla Elecare and we have been able to distract her from food thus far. Piper will continue to have TPN as long as she is on gut rest in order for her to continue to receive the nutrients her little body needs so desperately. Unfortunately he does not want to use her port for the TPN because of the sugars and possibility of contaminating her port-line, resulting in some serious side effects. So tomorrow she will be de-accessed and a less permanent PICC line will be placed in her arm. Fun times indeed.

- The MRI that she had last week came back with good results. Her spinal cord is in perfect shape. The one thing that did show up was a loss of marrow in her left tibia. This is not uncommon with the amount of chemo and steriods her body has received and it is not something that is fixable but rather something that will require a little more work to get her moving...

- ...which brings me to the final bulletpoint in tonights presentation/update. Piper needs braces for her ankles. Because of the malnutrition, because of the CMV, because of the diarrhea, because of 18 months of chemo, because of the stubbornness inherited from her mother...pick your vice. Either way, she has been immobile since Christmas and as a result is beginning to develop "foot drop" in which her feet are not in the correct position to stand even if she did have the strength. So orthopedics is bringing her some fancy-shmancy braces for her ankles as well as additional support for her left tibia area.

Because we are making such headway with Pipers energy levels and nutrition needs we are now planning to spend the next 2 weeks in the Rehab area of CHOA. She will receive intensive physical therapy as well as occupational therapy for about 6 hours a day, 7 days a week. While I am certain we will both be exhausted and I am certain the other half of this Needham Crew will be missing us as much as we miss them, Chad and I feel strongly that we need this to begin getting Piper back on track. Providing it jumpstarts her progress, she will continue with less intensive but still multiple times weekly pt and ot on an outpatient basis after she is discharged.

I've said it before and I truly mean it. I love a good plan. And now we have one. Please pray for any and all of the above bulletpoints. I have to say that while you are all asking for big things from my Big God, I am going to be thanking Him for the new and improved little girl I have been hanging out with the last 48 hours. Who knew that Piper was actually a silly and sweet one year old under all that chemo/cmv/steroids/diarrhea?

Because she is!


  1. so glad you have a PLAN! that is good news! And I am thankful that you're glimpsing your sweet little Piper apart from everything her poor body has been through. Will continue to pray for her! and you all!

  2. Yay for a plan!!!!!!!!! Yay for Piper being silly and enjoying herself!!!!!!!!! Yay for CMV levels having dropped so much!!!!! I love some good news! I will be praying for the PICC line, allergy testing, PT appointments, time apart as a family, being off the AFLAC floor (boo!), and anything else I can think of! Give Piper a big hug from us! We love you!

  3. Hi lady, so wonderful to hear an update. I'd love to come see you when i get back into town next week. We miss you all and love you dearly. Let us know if we can help out in any way... (i.e. keep your eldest for part of a day perhaps???)

    Much love and kisses and prayers going your way.

  4. Praying for all the bullet points and much more. Think of you guys all the time. Lots of love, Mu, Biren and Aadita