As promised, I’m going to try to lay out a more detailed plan of what Elizabeth’s care looks like from here on out, and how we can all be involved. I assume some people won’t want to read through all of this, so here’s a little outline and you can scroll down to something if it sounds like something you want to help with or know more about:
1. Elizabeth’s current treatment plan (changes since the last email and more details going forward)
2. Her living environment and ways to help us keep it safe and clean
3. Food! There are lots of new guidelines and we could use some help making sure we have healthy, yummy and safe food around.
4. What the next year looks like for Elizabeth financially and where the donations are going
5. Odds and ends Elizabeth & her caretakers need (because sometimes something random and tangible is the perfect way to help)
6. Visits, rides and scheduling
1. Current Treatment Plan
Elizabeth was initially scheduled to be admitted to OHSU on the 14th, however her transplant schedule was pushed back a week as further testing was done to ensure everything was all set with the donor. She was admitted this Monday, the 21st (eclipse day!) We got to go outside to watch the eclipse, which definitely felt like a really good sign 🙂 Here are a few pictures:
Much like induction chemotherapy, the days leading up to, and following transplant are given numbers. Monday was day -8, and transplant will be on day 0. So, between days -8 and day 0 Elizabeth is given two different forms of chemotherapy. These are meant to completely eliminate her bone marrow/immune system so that her body is ready for the transplant. She will get the transfusion of the donor’s stem cells on day 0. This looks like a blood transfusion, but is actually the transplant itself! Following transplant, for days 1-12, she will be given a number of different medications and extra care to help her body adjust and accept the new immune system. They’ll continue to monitor and help her recovery until she’s eating enough and her neutrophil counts (the subset of white blood cells that make up our immune system) are at a safe level. All together, this means Elizabeth will be in the hospital anywhere from 2-4 weeks.
After transplant, Elizabeth gets to come home! The first 100 days of transplant (counting up from day 0, when she receives the new stem cells) are the most important in making sure Elizabeth’s body stays healthy and doesn’t have to fight off anything “extra”, like colds or infection. In order to help keep her healthy there are lots of new guidelines for what foods we will be making, what kinds of activities Elizabeth will be doing, and how we keep our house clean. Additionally, Elizabeth will have 24/7 care. This sounds daunting, but essentially it just means that someone is around to make sure that Elizabeth has extra support on any days when she has chemo fatigue, keeping an extra set of eyes on any symptoms or side effects that the doctors would want a heads up about, and taking on some of the day-to-day tasks that aren’t safe for Elizabeth until after day 100. We are feeling strong about our ability as a team to make sure that 24/7 care is something we can all provide and that Elizabeth will have the help she needs to live and recover safely at home.
We also are thinking of this as a larger team effort and one that we’re extremely grateful for everyone’s help in so far. The next few sections I’ll just try to outlines ways in which we will be handling different aspects of Elizabeth’s care and ways that we would love a helping hand.
2. Our Living Environment
After transplant, Elizabeth will come home (hooray!) for the rest of her recovery. In preparation we are making some changes around the apartment and some routines will have to adjust once she gets home. Dust, mold, fungus, and bacteria are all big risks for us now in our home. One change we made in preparation for Elizabeth coming home is getting professional help with deep cleaning once a week. This will help us keep our floors clean, our bathroom mold-free, and the dust at bay.
Once Elizabeth is home, the hospital makes two categories of activities post-transplant: clean activities and dirty activities. A lot of day-to-day household chores fall under the “dirty activities” list, which means they aren’t very safe for Elizabeth to do until her body is fully adjusted to the new immune system. These include cleaning, driving, laundry, and cooking.
Just a couple little ways you can help when you visit:
– After every person uses the bathroom, we need to do a basic sanitation. There are lysol wipes in the bathroom to use to wipe down the sink, door nob and toilet seat. Thank you!
– Like before, we aren’t going to be able to keep living plants or flowers in the common spaces for a little while (they’ll be on display in the sun room though!)
3. Food
There are a number of guidelines for how we can prepare and provide healthy and safe food during the first 100 days. Some of the guidelines are obvious, some are fairly specific. The biggest changes are that Elizabeth isn’t really able to cook during that time period, and we can’t eat anything from restaurants or bakeries or pre-made food from grocery stores (e.g. deli potato salad or mac and cheese from the hot food counter). Things that we can serve however, are pre-packaged foods (like granola bars, mac and cheese from a box, or apple sauce.)
More specifics: Some fruits and veggies need to be completely washed and pealed before they are safe to eat (often for the obvious reason that we usually don’t eat the skin or rind): Apple, Avocado, Lime, Peach, cucumber, Orange, Watermelon, Mango, Kiwi, Carrot, Banana, Pineapple, Honeydew, Papaya, Onion, Pear, Lemon, Cantaloupe, and Squash.
Some fruits and veggies can be eaten unsealed but must be washed (and generally just a good rule of thumb to wash everything right now): Tomato, Apricot, Blueberries, Celery, Prunes, Raisins, Plum, Radish, Green beans, Grapes, Cherries, and Bell pepper.
Some fruits and veggies are not allowed unless they are cooked ahead of time: Strawberries, Raspberries, Bulk dried foods, Lettuce, Broccoli, Cauliflower, Mushrooms, Marion berries, Blackberries, Spinach, Leafy greens, and Cabbage.
The meal train website is booted back up and help every week or so with some home-cooked meals would be much appreciated. This means that we get a little break from cooking, and a little variety! I have uploaded scanned copies of all of the detailed guidelines for what is safe to a “nutrition page” here which should help answer a lot of questions.
Emily is going to be the point person for all things food-related. If you have any questions about what might or might not be safe feel free to ask her and she’ll also be able to give a heads up if mouth sores are making it hard for Elizabeth to eat certain foods, or if chemo has changed any particular tastes or cravings. She has a key to the apartment and lives just down the street so she can coordinate drop off times for meals and anything else that comes up. Her number is (six one six) 485-7141 and her contact info is on the Meal train page.
4. Finances
The Elizabeth Maxon Third Party Special Needs Trust is established and we’re starting to use the funds to prepare for transplant. One example of this is getting professional help cleaning and sanitizing the apartment. We live in a very old building and keeping the dust and mold at bay is no small task! Elizabeth, her family and all of us around her can’t thank everyone enough for all the kind and generous donations that went into the GoFundMe Campaign.
Elizabeth will be consulting with her oncologists going forward on when it is safe for her to return to work. The general rule of thumb is about a year after transplant, and potentially longer depending on the line of work. That’s not to say that she’ll be inactive the whole year, but the stress and expectations that come with full time jobs and the exposure to illness is something that her oncologists will have to weigh out as she gets better.
With this in mind, and with medical costs still somewhat unknown, the GoFundMe is still open (although I’m still not sure if it’s been easy to use… never hesitate to contact me and let me know if you have any issues), and direct donation to the Trust are welcome. A direct donation to the Trust avoids the GoFundMe service charge, which is always nice, and we can still log the donation towards the total fundraising goal.
If you ever have any questions about the Trust or donations, don’t hesitate to ask me. Eric Kearney is also available to answer any Trust-related questions. Again, the year ahead would not be possible without the donations everyone has already given, so thank you!!!!
5. Odds and Ends (aka Amazon)
Sometimes helping with tangible things feels really good, and it’s often hard for Elizabeth or her care givers to remember all the things we need or to know who to ask. An Amazon wishlist will help keep track of things we need for this new set up. We’ll keep adding things as they arise, and if you have some place you’d rather get things than Amazon, just let me know and I’ll remove it from the list (ex: we have a couple 3 ring binders on the list. If you have some binders around your house you don’t need that works too!)
6. Visits and scheduling
Visiting and being physically present is always great! After the first round of hospitalization, I realize that sometimes it’s hard to know who to coordinate with and how to check in to see how Elizabeth is feeling on a given day. Feel free to continue texting/communicating with Elizabeth or the next week or so if you are planing visits to OHSU. In about a week, it’s very likely that she will be feeling the chemo more and won’t be able to respond and coordinate as easily. I’m happy to help coordinate visits after that and let people know what Elizabeth’s day is looking like if she’s unable to get to her texts. I can send out an email giving an update and letting everyone know if/when that makes the most sense.
For updates on Elizabeth’s care and treatment, since Elizabeth may not always be able to respond or update people individually, don’t hesitate to text/call or email me, Stephanie, Bob, Emily, or Garrett. If you would like someone’s number or email that you don’t have I can send it to you. We’re all available to help support Elizabeth and keep everyone up to date.
I know this email is a lot of information. My number is (two zero six) 992-3439 and email is simonewood9 at yahoo.com if you have any questions or thoughts on any of this. Thank you guys for all your patience with this email and your wonderful support of Elizabeth.
All my love,
Simone
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