Life within the skin...

This week's mental vacation is a beach in Indonesia (not sure where it is located, Google helped me find this one).

So first off I should tell you I was wrong about mom's pills, apparently she's not on 40 she's on around 56 (if I remember what she told me). It took me about 30-40 minutes to sort through the pill boxes (a total of 42 slots for the meds to go: 8am, 12pm, 2pm, 6pm, 9pm, and middle of the night). But with her help we are getting better at filling it! :)

Each week comes with a new set of pill adjustments and more plans for the future (she will most likely not be able to reduce her number of medications until after Day 100 post-transplant when she will be weaned off of her current meds). The latest addition to her medicine cabinet (which is actually a tub of medicine bottles). Is a lotion to help with her rash, which was recently biopsied but is likely a symptom of Graft Verses Host Disease (GVHD). The new medication is to help deal with the itchiness of the rash, which is to the point that without the lotion she wakes up and is unable to go back to sleep because of the intensity of the sensation (itching). So prayers that her system recovers quickly and that no other GVHD symptoms become apparent. More details about GVHD can be found on:
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002286/
http://en.wikipedia.org/wiki/Graft-versus-host_disease

The current assumption would be that it would be Acute GVHD because she's less than three months post transplant.

At this point the GVHD a good/bad sign. It's good in that it shows that the donor cells are doing their thing, it's bad in that it means their attacking her body (her skin) as well as the leukemia cells (what may be left of them) and her marrow. At this point we are still waiting for Day 60 to see what's REALLY going on inside her marrow!

Other than the GVHD, mom's still dealing with significant fatigue. Her body is really going through the ringer right now. So she's sleeping about 8-12 hrs a night, plus a nap in the afternoons. Good news is her cell counts are starting to come up (prayers that no Leukemia blasts are coming back with them). And as a result of her counts she needs less transfusions and clinic visits, she got Saturday and Sunday off last weekend! Go mom, go! :)

Last note of the day, as I head back to work and then off to spend time with mom and her sister (back from California for a short visit this week). Last thought is more of a shout out!

To those of you who have been in communication with me and have been stepping in as volunteers for mom: either in making meals/buying groceries, being her companion during days and nights, providing rides, leaving her notes on caringbridge and in letters to her, and those who have provided so many other acts of kindness for all of us. If you want to join the team send me your information at wolkate@bethel.edu (email and phone) and I will add you to our volunteer site.

For those of you who are unable to volunteer but want to contribute another way, the hospital bills are starting to show up. And though we haven't hosted the fundraiser you are still able to contribute to her cause though the following link: http://www.transplants.org/donate/dixiewolfe
(Note 98% of this goes back to mom and it is a tax deductable donation).


Thank you again everyone!!!

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

Quick Summary and a Whirl Wind Tour!

Well I think yesterday we set some sort of record. (Thanks to all those who volunteered over the weekend and helped mom moves stuff home!!!) So back to the story...

I worked a half day at my day job and then met mom at the hospital. We went through our second course of "post discharge" training and mom's meds (or as I call it "Mancala with pills" see: http://en.wikipedia.org/wiki/Mancala). After the 3 hrs of training our brains were pretty much mush and I packed up all of mom's stuff in my car-while wearing my lovely yellow mask the whole day mind you-can't be too cautious when one's coming off a cold and you're beloved mother has no immune system. And then mom's friend Laurie was the transportation of the immune compromised mother.

We all made it home, unpacked the suitcases, I quick added the mattress and sheets to the spare room for another one of mom's friends who was her companion for the night, and then Laurie brought us a lovely potpie dinner and we all laughed for a bit. Over all a lovely transition home, though reasonable exhausting.

Now onto the fun!!! So now that mom's cells are onto their next adventure the goal is to get her new stem cells (the cord blood cells) attached and growing. It's assumed that they are doing some of this because her counts have been coming up, though she's been receiving Growth Factors to help stimulate their development. Over the next few months they will attach to her marrow and start growing a whole new immune system. During this time her body can be resistant to the new cells taking over, creating new policies and regulations (sorry too much about politics in the news lately) and as a result her body may attempt to fight off the new cells-causing Graft Verses Host Disease. This may appear on her skin, liver, stomach, etc. It all depends on her body and her new cells.

This is part of the reason she needs 24/7 observation and companions through Day 100 (post-transplant) because it will take that long to get her new system established. I will be trying my best to fill in when I can, but with two jobs, being primary caregiver, and trying to maintain my own health and sanity I will be looking heavily to all of you for support and assistance in caring for our patient.

Just wanted to give you all the quick update and will try to post again with more updates soon!

All my love,
Kate