Elizabeth is on Day +10 from transplant! She had transplant on Thursday August 31st, so Day +1 was September 1st (making it all the easier to keep track of what day out from transplant she is).
Transplant was delayed slightly (from Tuesday to Thursday) but was just as uneventful as the doctors predicted. The transplant looks a lot like a blood transfusion. The only difference is that instead of being a bag of blood, it is a creamy pink color. The stem cells themselves are kind of white (like platelets), but there are just a couple red blood cells that make it into the bag giving it a pinkish color.
Some more tidbits about the transplant: Elizabeth changed blood type from A- to B+. From the day of transplant until when the transplant “engrafts” and starts making new blood she is getting O type blood products whenever she needs transfusions. This is because A and B type bloods actually have antibodies to each other and so they don’t want to confuse her body until it fully makes the switch. She didn’t feel any different during the transplant and didn’t even have any reactions (hives or fevers are very common) so the whole thing went very smoothly.Her donor is from another country! But we don’t know where.
This week has been the hardest part of treatment so far for Elizabeth. Post transplant, people usually start to feel the full effects of the chemo as their blood counts drop completely. On top of that, after transplant the first 11 days include doses of Methotrexate. This is a drug that keeps Elizabeth’s own immune system from bouncing back before the new immune system has a chance to take hold. The side effects are really crummy. The main side effect is mouth sores, which Elizabeth has experienced before but never to this degree. Our mouth, throat, and digestive track are some of the fastest regenerating parts of our body. Since the methotrexate keeps Elizabeth’s body from producing the kind of cells that repair tissue she has really painful sores and inflammation throughout her mouth, throat and stomach. This is called Mucositis.
Eating and drinking is extremely painful for Elizabeth so they are giving her all the nutrition and fluids she needs through her IV. She tried some pudding yesterday and has continued to drink water as much as possible, which is excellent. The nurses and doctors are all very reassuring that this is absolutely normal and expected, though that doesn’t make it any less awful for her to go through. They have worked hard to help find some pain management solutions for her. It doesn’t alleviate all the pain by any stretch, but it allows her a little relief and at least lets her get some rest.
Elizabeth got to look through a bunch of cards that her students made for her yesterday and it was an enormous highlight to the week (thank you for bringing those by, Gretchen!)She isn’t always able to answer her phone or respond to texts right now, but any photos, voicemails, or videos are great because she can listen/look at them whenever she’s awake. Mail is also super fun and she can put it up around her room. Our apartment’s address is 833 NE Schuyler St. Apt 4, Portland OR 97212. Little post cards or drawings are a huge pick-me-up and I will always deliver stuff by the next day at the latest!
Her counts will hopefully start to pick up this next week and she’ll probably be more up for visitors (she can have them now she just may be sleepy a lot of the time.) If you are having any trouble reaching her or wanting to know more about scheduling visits or who she’s doing, don’t hesitate to shoot me a text/email/call.
Here are some links to different resources to learn more about the transplant process and ways to donate blood or bone marrow (don’t worry – it’s not a scary surgery!):
Also, feel free to look at the last post for more details on the caregiving plan going forward, and the nutrition page for info on what foods Elizabeth can eat!
Thank you to everyone for all their love and support of Elizabeth.
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:
We got to OHSU in time to watch the sunrise!We got to run outside to sneak a peek (photo by Emily)(photo by Emily)
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.
It’s been a while since I sent an update, so I’ll try to give an overview of things that have happened or that you may have gotten wind of through Facebook or the GoFundMe or Elizabeth herself 🙂
For the last two months Elizabeth has gone through two rounds of consolidation chemotherapy. The first round was at Kaiser at the beginning of June. Consolidation went smoothly and she started on an at-home targeted chemo therapy called Rydapt. This is meant to target the specific markers of her form of AML.
As some of you may have heard, June ended up being a bit of a slog because of complications during her recovery from consolidation. She was in and out of the ER a couple times and was admitted for a longer stay as they treated her for infections that were causing some fevers. Though this wasn’t at all what Elizabeth was hoping for for the month, she was a trooper and they were able to locate the sources of infection to help treat her safely.
She got to be out and about for week or so before returning to OHSU for her second round of consolidation in early July. During recovery from that she was back on the Rydapt, which caused her counts to stay low longer than they might if she were recovering from the consolidation on its own. After a couple weeks they let her stop the Rydapt because the side effects were too overwhelming. Now her counts are recovering slowly but smoothly and she’s physically feeling much better. She’s busy most days of the week with appointments and labs, but she’s still getting to enjoy being home and Portland summer.
The biggest and most exciting piece of news is that they found an amazing donor match for Elizabeth!!!! She is scheduled to go in to the hospital around the 14th to begin the pre-transplant chemo. Transplant starts around the 22nd of August. They estimate that she’ll be in the hospital anywhere from 2-4 weeks. She then gets to come home for the rest of her recovery. The first three months at home will still be an intensive period of recuperation and care. The total recovery until she can work again will be around a year from transplant. Though the timeline feels daunting, we are so incredibly excited that a donor is all set to give and that she’s starting this process!
Supporting Elizabeth during transplant will be a group effort and will take any number of forms. Most importantly, sending Elizabeth love makes a world of difference. Every card, drawing, video and picture from the kids in her life is precious and uplifting. We’ll know more about what she’ll need once she’s in the hospital and I’ll try to send out a more detailed email on help and care then.
In other news: I’m hopeful that the GoFundMe is finally working again (if you happen to hear or experience that it’s not, please let me know directly because otherwise I have no idea). There’s a more detailed post about this on the GoFundMe, but at the end of June Eric Kearney and I established the Elizabeth Maxon Third Party Special Needs Trust. This is a Trust for Elizabeth’s sole benefit and all of the donations that people have given through GoFundMe are deposited there. Let me know if you have any questions about GoFundMe or giving directly to the trust. Eric has also offered his help in answering questions. Thank you all again for your support of Elizabeth.
I have also added more days to the Meal Train calendar that Jordan set up for the time that Elizabeth will be in the hospital. She may not be able to have food from restaurants during transplant, but home cooked meals and groceries are always very welcome to spice up the hospital menu.
All in all Elizabeth is doing really well. The lead up to the transplant will be fairly intense but she’s going in with amazing strength and energy.
My apologies for how long it has been since the last update. Since the last email there have been a number of hurdles Elizabeth went through to get to the most exciting piece of news yet…
ELIZABETH IS HOME! Yesterday we packed up the car with everything from her 7 week stay at OHSU and came home. She’s still recovering her immune system, but she’s able to be outside, see people in small groups, and get stronger while being in her own space.
A quick recap of things since the last email: after the last round of chemo, Elizabeth got her third bone marrow biopsy. The biopsy showed that she was in pseudo-remission. Remission is technically achieved when the cancer cells are 5% or less in the bone marrow and when her hematocrit (red blood cells), platelets (the things that allow you to clot), and neutrophils (the white blood cells that form your immune system) are above a certain level.Chemotherapy causes those three things to go way down, so doctors often wait until those are recovered to see if the cancer levels have stayed down as the blood and immune system grow back.
In Elizabeth’s case, the second round of chemo knocked her cancer cells all the way down to 3% in the bone marrow!! While her counts hadn’t fully recovered, this was still great news because it meant that the cancer responded to the re-induction chemo as the doctors hoped.
Elizabeth waited for a few weeks after those results to build back her immune system in the hospital. She finally got the news yesterday that she was clear to come home!
We’ve now entered a bit of a waiting period as the doctors try to find Elizabeth a bone marrow donor. Elizabeth will go in regularly to get labs taken, and next week for another bone marrow biopsy.She will likely go in for one or two rounds of consolidation chemo while she waits.Consolidation chemo aims to keep the cancer cells low and is generally a 5 day stay in the hospital. After the 5 days, she’ll be able to come home to recover.
Some preliminary results came back from the bone marrow donor search.While Elizabeth had large pool of initial matches, they have found that she has a rare antigen in her blood that makes finding a match more difficult.If you’re interested in becoming a bone marrow donor, you can request a cheek-swab kit at bethematch.org!
Since Elizabeth has returned home, she will start to buy food, pay bills, and return to some kind of routine. The donations everyone has made to help pay for these costs, the food people have brought, and the thoughtful gifts people have sent are helping so much. Thank you to everyone, Elizabeth is deeply grateful. I also want to say what a gift it is to see how many people continue to reach out and support Elizabeth and those around her — I’m thrilled that she’s home and also relieved to know that she has so many people by her side for the next chapters of her treatment.
Lots of updates since the last email (sorry it has been so long)! On the 18th Elizabeth had her second (day 14) marrow biopsy and we learned that though the leukemia levels in her bone marrow went down significantly, she was not yet in remission. Remission is determined when the cancer cells are down to ~5% or less. Elizabeth’s bone marrow still had about ~20% cancer cells in it.
To get her into remission, they started her on the next round of induction chemo on Thursday the 20th. This is also called re-induction chemo and is slightly different than the drugs she got in the 3+7 treatment. It was comprised of Mitoxantrone, Etoposide, and Cytarabine. Unlike the last round of chemo, which was given continuously over 24hrs, each one of these was given for a shorter amount of time back to back. It took about 3 hours each day over 5 days.
While on this treatment, Elizabeth used eye drops to protect her eyes from the high levels of cytarabine and couldn’t wear her contacts. She got her hands on a cute pair of glasses (thanks to Emily and the crew at Lens Crafters).
The other side effects of that round of chemo were fairly intense nausea, irritated eyes, and generally feeling tired and uncomfortable. She finished that round on Monday, and now she’s just been recovering her immune system and trying to eat as much as she can.
This Friday (the 28th) Elizabeth decided it was time for her makeover and went for a buzz cut!
Here is a picture of her trying on a wig that Emily picked up in Seattle:
Going for the buzz cut was a little scary, so Elizabeth made it into a party. We listened to some music, drank some sparkling apple cider that Robin provided, and she wore a sassy t-shirt from Jordan and William.
Looking beautiful and glowing with a smile!
She’s feeling better each day as the chemo leaves her system and she’s really hoping to come home soon. The doctors are working on finding her a bone marrow donor, and she’ll come home in a few weeks to rest up before the next bone marrow biopsy and round of chemo.
One thing that’s been really wonderful, is all the food and snacks people have sent. It gives Elizabeth variety so she’s eating things other than hospital food, and it helps the people who are staying at the hospital a lot get some food while they are there. Jordan has lovingly organized a Meal Train to help coordinate this so that Elizabeth and the people around her can have some help with food every so often. If you have any interesting in cooking something up or dropping off some snacks, here is the Meal Train page. It has Jordan’s contact info on there if you have any other questions about it.
Thank you to everyone who has been visiting, calling, and sending cards and love her way!
It’s been a handful of days since Elizabeth finished chemo and she’s already feeling much better. Though her appetite is lower, her energy is much higher and she’s been hanging out in the 13k family room, reading and texting more, and just generally feeling more active. The swollen arm is getting better slowly, which is great news because it means Elizabeth is more awake, clear-headed, and happy.
Flu season is over as of today, so we don’t have to wear gowns and masks in her room anymore! Unless you’re feeling sick or have any symptoms, in which case you do. But, the safest option is to wait until you’re well to visit anyway.
Thank you to everyone who’s been visiting and bringing things to brighten her day. It’s definitely really hard to be away from school.She is loving getting art, pictures, videos, and letters from all the kids in her life. ❤
The second half of this update will be a more specific timeline, but first I want to share a few resources that I’ve found helpful and that the doctors recommend.
Over the course of treatment, Elizabeth has gotten a number blood and platelet transfusions. A few people have asked how/where that comes from and how to give back. These transfusions are supplied by The American Red Cross, which gets them from donations. If you are interested in learning more or donating, their website is here: http://www.redcross.org/
Down the road, Elizabeth will be receiving a bone marrow transplant. Her donor will be found through the National Marrow Donor Program. Something I just learned is that donating bone marrow, in most cases, is very similar to donating blood – not a surgery.To learn more or potentially donate to another patient going through what Elizabeth is going through, https://bethematch.org/ is the link to the national registry. They can send you a cheek swab kit within two weeks. There are also local events where you can register on the spot!
The internet is a vast sea of knowledge, but also a mixed bag when it comes to medical advice, statistics, and facts. Elizabeth’s doctors recommend cancer.gov and lls.org as resources for learning more and answering questions.
Going Forward:
In the next few days we’ll be learning more about the timeline for the rest of Elizabeth’s treatment.Here is the general overview of what we know now.
AML is generally treated in two or three phases. First is induction. Induction is one or more rounds of chemotherapy that aim to lower the cancers cells enough so that it goes into remission. The second phase of treatment is called consolidation. This is a round of chemotherapy that aims to get rid of any last cancer cells and prevent the leukemia from coming back.In some cases, the third phase is more chemotherapy and a bone marrow transplant.
Right now, Elizabeth has finished a round of induction.She did really well with the first round of chemotherapy (it’s never a picnic, but she really rolled with the punches amazingly), and this is a great indicator of how she’ll react to the next phases of treatment. In the coming week, she’ll have another bone marrow biopsy, which will help the doctors understand how her body reacted to the chemo and if she’s going into remission.
Once Elizabeth is in remission, she gets to come home for a week or two before receiving the next phase of chemotherapy – consolidation. Consolidation chemo is a 6 day treatment, most likely with cytarabine, one of the drugs she had during the first round of chemo.
Elizabeth has a type of AML that is most effectively treated with a bone marrow transplant.After consolidation chemotherapy, Elizabeth comes home for a whole month to recover. The doctors have already started looking for a bone marrow donor match using the National Bone Marrow Registry. Once they have one, she will return to the hospital for the pre-transplant chemo and the transplant itself. Receiving the transplant is generally just like getting a blood transfusion. Though the recovery from a transplant can take a little while, it is the best way to prevent the cancer from coming back.
Here are the links again from above:
The American Red Cross – for information on blood and platelet transfusions and donations: http://www.redcross.org/
Be The Match – for information on the National Bone Marrow registry, transplants, and donations: https://bethematch.org/
The Leukemia and Lymphoma Society – for more information on AML, treatment, and support: http://www.lls.org/
There’s a lot we’re still learning, but feel free to text/email me with any questions or thoughts on all of this information. I’ll try to snap some more pictures for the next email 🙂 I’m still happy to help coordinate, but since Elizabeth is feeling better, you can also text her directly to find a time to call/visit. Thank you again to everyone for sending Elizabeth so much love and support.
Today is day 7 of the 3+7 chemo! Elizabeth is getting the last bag of Cytarabine, which will be done around 5pm tomorrow.
Her energy and mood are up today from the last few days, especially with all the cookies, doughnuts, and snacks people have sent.
The week started off a little bit rough. The picc line in Elizabeth’s arm formed a clot and her whole arm swelled up. That caused a lot of pain and she ended up needing to have the picc line put in on the other arm. It has taken a few days of laying low for her to be able to use the swollen arm again, but it’s getting better today.
Chemo is going fairly smoothly and she’s working on figuring out what kind of schedule works for her. Today we went for an early-afternoon stroll and she felt pretty energized.
By the evening she’s pretty tired and all of the drugs make texting and reading slow-going. But she’s stable and keeping up as much of an appetite as possible.
As she gets further into treatment and things are a little hazier, it’ll be important for us to limit the number of people in the room at once. She’s loving seeing everyone, and the best way for her to soak in what’s happening is with only two or three people in the room at a time. When there are more visitors than that at once, we can always take turns from the visitor’s lounge 🙂 Everyone’s flexibility and understanding around visiting has been great.
Elizabeth is unbelievably grateful for all the support, books, snacks, donations, and love everyone has sent her way. Thank you!!
Elizabeth started chemo on Wednesday and is doing really well. Today was her last day of idarubisin, and she has four more days of cytarabine. None of the side effects are super strong at this point, just a little tired and slight nausea. She still has a strong appetite, which is awesome. There have been a constant flow of visitors, texts, and calls, which feels great and helps pass the time. Her blood levels are stable, which means that the internal bleeding that originally brought her into the hospital has stopped and she’s healing well. We won’t know more about the type of cancer cells (the risk level) for another week and a half (14 days after the biopsy). But so far chemo is going smoothly and no big changes to report.
Visiting:
So much love for Elizabeth! In terms of scheduling, this weekend is nice and full of visitors. A number of people are visiting from out of town, which is super special. She’s thrilled and can’t wait to see everyone. For planning purposes, and to simplify the logistics for Elizabeth, it would be great for people to text me this week/weekend, rather than her, to find a time to visit. In general, I think she’d like to start keeping mornings as time for herself and to meet with the doctors, and then plan visitors for the afternoon and evenings depending on how well she’s feeling. Text me anytime and I’ll try to get back to you as soon as I’ve checked in with Elizabeth. My number is 206-992-3439.
Now that chemo has started, we’re in full gown-up mode even if you’re spending the full day or night. Before entering her room, please put on a gown and a mask. The gowns are in the top drawer of the cart outside her door, and the masks are on top. There’s hand sanitizer outside the door and in her room – I’ve been going nuts with it. Masks are still needed when you’re walking around the hospital going in and out of her room. And in all situations where it’s unclear, it’s better to be cautious.
Helping:
Tons of people have asked how they can help, send Elizabeth money, or donate to her medical and living costs for as long as she’s in treatment and unable to return to work. We’ve set up a GoFundMe for this, and we’re all incredibly grateful for how generous everyone’s been so far. Feel free to share it however you want.
We also set up a website so, rather than sending emails to you guys directly, I’m just going to post on that blog and anyone who wants to be updated can sign up. I know it’s not quite as personal, but go ahead and subscribe on there to get these from now on. If you’ve already subscribed then you might get this email twice.
Email or text me with any questions or suggestions with the whole fundraising thing (we’re all wanting to help Elizabeth, but new to how these things work) ❤
Thank you all for reaching out and I can’t tell you how loved and cared for Elizabeth feels right now. I feel really grateful that we all have each other’s support right now.
I realized I forgot to say what room she’s in, how to get here, and where to send anything to her!
She’s currently staying in the Kohler Pavilion at OHSU. Once you get to the Kohler Pavilion, head up to the 13th floor (Adult Oncology Unit) and she’s in room 3. There are lots of signs with instructions, but we’re still learning how it all works.
— As soon as you enter the unit, there are sinks to wash your hands
— Go to the nurses station, sign in and put on a sticker that indicates that you aren’t sick
— If we’re visiting for just a little while (less than 2 hours maybe) we need to start wearing masks and gowns when we enter the room
— If we’re visiting for most of the day, we don’t need to wear masks and gowns in her room, but we need to wear masks outside her room for as long as we’re in the hospital.
— Before touching Elizabeth or handing her stuff, make sure to use some hand sanitizer
Packages or letter!
If you send them to our apartment, I can bring it to her no problem!
Elizabeth Maxon
833 NE Schuyler, Apt 4
Portland, OR 97212
As far as I know right now, real plants and flowers still aren’t allowed in the room. But fake ones are!
As some of you know, and as some of you may be learning, Elizabeth just found out that she is very sick. She was diagnosed with Leukemia yesterday evening. She went in to Urgent Care to have some stomach pain checked out, and as they ran tests they found abnormalities in her blood counts. It was all really sudden and unexpected last night, without very many answers, but they ran as many tests as they could and transferred her to where she could get intensive care.
As of this afternoon, we have a few more details, though we’re still trying to figure the whole thing out. So far, the doctors say she has AML, which is Acute Myeloid Leukemia. They don’t know the exact cell type — that will take more time. However, knowing that it’s AML means that it is treatable and she will be starting chemotherapy tomorrow. The treatment type is called the 3+7, and I believe, though the internet will know more, that it should take about 7-10 days to be administered. However, she will be in the hospital for as long as a few months as they take care of her.
Right now she is at OHSU, she has very good doctors and nurses looking after her who are doing their best to figure out what exactly is going on. This has all happened extremely quickly and there is a lot still to learn and find out. I will be providing updates as we know significant developments via email.
In the meantime, she’s in a beautiful room with a great view. If you live in Portland, she’d love to have you come by and say hi. I was told we weren’t supposed to bring flowers, but then I saw someone else with flowers so I’ll get back to you on that one. As of this afternoon she is on an “open diet” which means she can eat food we bring her, but no raw fruits or veggies, i.e. no salad or berry shakes etc. Finally, especially with chemo starting, it’s really really important that we’re healthy ourselves before visiting her. The body is susceptible to infection and virus when it’s battling cancer and undergoing chemo so washing hands a lot, wearing a mask and gown in her room if we’re visiting for less than a full day, and opting for a phone call if we feel under the weather is important. If you’re not in Portland, you should feel welcome give her a call, or text, or facetime. She’d love to see/hear from you.
At the moment that I’m sending this, she’s asleep, but she’ll probably be awake in a few hours and checking her phone ❤ If you aren’t comfortable getting these emails, let me know. For the next few days I’m going to try to be here as much as possible, and you’re welcome to text me to ask questions (just so she’s not inundated), or to see what’s happening before visiting. I figure other people will be here more at different times so we can of course just try to keep in touch and offer support as best we can.
Elizabeth's Updates 