The plan from here on out...(as of day 35 post-transplant)

(This is my current mental happy place, don't remember where I found this picture but I LOVE it!)

Mom, during transplant...

Good morning my darlings!

So as you know my mom is now home and settling into a new routine. LOTS of medications, rest and time with wonderful volunteers! Each day is a new adventure and one moment closer to her new immune system! :)

When mom was discharged at the beginning of last week, it was NOT because she was fully healed and recovered. She was discharged because her cell counts were high enough to warrant her going home. (The longer one is in the hospital the harder it is to transition home. There is also the increased risk of "superbug" infections. These occur in hospitals and are highly resistant to treatment because they have morphed to overcome the HIGHLY sanitary state in which the patients live, while inpatient.) So moral of the story she's home because she's less likely to acquire a hospital infection and her spirits and strength are more likely to improve when she's in her own home environment.

This is not to say that all medical treatment has been removed! She's still going through daily clinic visits for labs and transfusions (including hemoglobin, platelets, and Growth Factors-which she was receiving to stimulate cell growth, however her current clinic doctor stated that this can also cause the cancer cells-if any are left-to increase rapidly, so they are taking a break for a while from that infusion).

She also is taking about 40 medications a day, I say it feels like I am playing Medical "Mancala" (http://en.wikipedia.org/wiki/Mancala) whenever I help her fill her pills boxes (yup that's plural). The medications range from anti-fungals, to potassium and magnesium, to all sorts of fun colors and sizes. Mom gets tired of it. Twenty plus medications in the morning take about an hour to just get down.

Needless to say she's exhausted, my personal assessment is that her spirits are higher than before she left the hospital. But between the medications, visits to clinic, and activities at home she is frequently fatigued and spends large portions of the day sleeping. This is NOT a bad thing. As mom's friend, Lee, stated mom's body is currently "is building a skyscraper verses just having general maintenance done on a warehouse". Her body's old marrow (immune system) is having its butt kicked by the new marrow invading her system. And from day 30-100 her marrow will be completely destroyed and the new marrow will fill in that space. (http://www.marrow.org/PATIENT/Donor_Select_Tx_Process/Early_Recovery_Days_30_100/index.html)

Again Graft-Verse-Host disease (see previous blog) and Engraftment failure are both possible risks at this point but her doctors will be watching her vigilantly during the 100 days post transplant. This is also why she requires 24/7 care to monitor for any symptomatic changes. So THANK YOU to all of you who are being such wonderful companions for her right now. With two jobs, volunteer coordinating, and trying to find time to breath I SINCERELY FROM THE BOTTOM OF MY HEART APPRECIATE ALL THAT YOU ARE DOING TO HELP!!!

With all my love,

Kate