As you may know, in November (2018), on a regularly scheduled surveillance CT scan, a recurrence of our mom’s/Jean’s Hodgkin's Lymphoma was detected. She has a great medical team, and is following a plan for treatment that has a good chance of potentially being curative.
Since January, she has gone through 3 cycles of chemotherapy (a different regimen than last time), and now is preparing for an autologous stem cell transplant (also known as a bone marrow transplant using her own cells). This is a super intense treatment -- requiring a long hospital stay, a couple of weeks of in-home care, and then more months of slow recovery.
We know you love Jean; and we know we are going to need your help in various ways.
This is the plan for the next steps of treatment:
Over the next week or so, our mom/Jean will receive blood-boosting medication (via injections), have a central line placed, and then will undergo a sort of stem cell “harvesting” process (several hours on one or more days, via apheresis). This process should be completed by April 11th or so.
On Wednesday, April 17, Jean will be admitted to the OHSU Hospital. She’s likely to be there at least 3 weeks total.
The first six days will be a extreme form of chemotherapy.
On what they call Day 0 (zero), her stem cells will be transplanted back into her body. Between the intensive chemotherapy and this re-population of her stem cells, her entire immune system will be completely wiped out. (As an example, every vaccine/antibody she has ever received/developed will be erased. Eventually, she will go back through the process of getting re-immunized.)
After transplant, with a baby immune system, she will spend 14+ days in the hospital -- working on recovering and getting stronger each day. When her blood counts are at levels deemed strong enough, and she’s able to independently do all of the activities of daily living, she will be discharged from the hospital and sent home.
In the first two weeks at home, continuing to recover, she will need 24/7 in-home care. And in addition, she will likely have 3-5 doctor’s appointments per week. She will not be driving during this time.
As for the longer term recovery, we won’t exactly know what to expect, but it’s likely that she won’t be back to “full strength” doing all her “normal” stuff to the “usual” level for 3-6 months. As with any illness and recovery process, there will be good days, and there will be hard days. Sometimes her recovery with progress with obvious improvement. But we have been told that more often than not, this will not be a linear recovery. Instead, it will start, stop, seemingly go backward, and then jump ahead.
It probably goes without saying, but I’m going to say it anyway… This treatment -- and recovery process -- is going to impact Jean’s regular way of living her big, full life.
Our mom has a rich, robust life and calendar. And she’s done a beautiful job building a community of friends and connections around her -- from work to food and exercise, from community causes and the arts to reading and having fun. Even though she’ll be impacted by this treatment, and the road to recovery will be arduous, we want to make sure that she is bolstered physically, mentally, and socially as much as possible. We ask you to please continue to be a factor in her life.
We are working on setting up a CaringBridge page where we can keep you and others updated on the process and her progress. This will help us keep everyone informed at the same time - with recovery updates and with specific needs as they arise. www.caringbridge.org/visit/jeanstoll (https://wvw.caringbridge.org/e/493421/0for20Someone20Else20-20No20PW/6dxb36/330324169/jeanstoll?h=YhcQvKz24ZK_KN0rVIwagRwHiWJztpkm2gmO5lfhPrE
As a family, we love food. Our mom taught us throughout our lives: what you eat matters. It should be tasty certainly, and it has great opportunity to be healing and health-making. During her first 30-ish days after transplant, the food she eats will need extra care in preparation. And we hear that it’s likely she won’t be that hungry; and/or that she’ll be extra picky about what sounds/tastes good.
With her highly impacted immune system, there are extra precautions we’ve been asked to take regarding her surroundings. While she is in the hospital, the ventilation system is purifying the air in a way similar to settings in an operating room. We will need to take care to keep things extra clean at home (although we’ve been told that we cannot run the vacuum cleaner while she is in the house, which makes things extra tricky).
During her hospital stay and for at least 2 weeks after, Jean will not be allowed to have flowers or plants of any kind (even silk ones, as they can hold dust/something). When she gets home, her plants will have to be “sequestered” into a different room/area for some period of time. She obviously won’t be doing any yard work.
While she can have visitors, no one under age 12 is allowed on to the hospital unit, and even for those 2 weeks afterwards, please do NOT visit if you (or anyone in your household) have/has even a sniffle/scratchy thoat -- or anything more severe.
How you can help:
Good vibes never hurt -- so please keep them pulsing our way.
We know we will need help with things like meals, errands, some household tasks, rides and social interaction. We also know that our mom is going to be extremely fatigued, and we won’t know the extent of our needs until some time into the process. If you are interested in helping beyond sending a card/email, calling via phone/FaceTime (or similar), please let us know, or stay tuned to the CaringBridge site where we can share this info.
We know we are going to need human power and interaction to support our mom through this process. We know that our mom is social and needs her friends and family around to remind her of how integral she is to our lives, and to encourage her recovery. And at the same time, we don’t want to exhaust Jean with visitors. (Imagine you have the flu -- it’s a bad one too! -- and a friend comes by to chat. You want to be upbeat and friendly… but it’s hard enough just to keep your eyes open and your head off the pillow.) We will be monitoring her health status, her need for social time, and our own need for a respite. I am currently thinking that visitors in pairs might be the way to go -- you can talk with each other, and Jean can enjoy the ambient social experience, without holding up half the conversation. Maybe a visit with a purpose -- like a walk down the street or out for a cup of tea. In all of this -- we are going to have to learn what comes next.
It’s a lot. And it’s a lot of unknown. But we are strong, and our mom is strong, and our community of friends/family (like you!) is strong -- and we have the courage to face what’s hard… together.
Please feel free to reach out to any of us. We will keep you all posted as we are able via CaringBridge. Thank you! And we send you a big hug -
- Andra and Collin