Friends of Rainier,
Rain and his mama, Lizzie, were in New England visiting family over his school break. He had been a little sick with a mild fever for about two weeks so on December 26th we decided to check in with doctors in Elizabeth Town , NY, cause why not. After doing blood work we were told his white blood cells were alarmingly high and his platelet count was very very low. Because of these results we were sent to the oncology program at the UVM hospital in Burlington, VT right away. There the blood work was confirmed and we were given a diagnosis...
Rainier has b-all type leukemia, it is present in his spleen, testicles, and bone marrow. Thankfully it is not in his spinal fluid or brain. He is also now severely anemic because of the hemoglobin/red blood cell counts. As far as the cancer goes b-all is a more common and treatable type (nbd right?). Because it is also present in his testicles he is considered high risk. The testicles are considered a hideout for leukemia and can require longer treatment or extra chemo to get rid of the disease. We also learned that he has retinal hemorrhaging behind his eyes. This could be a side effect of a low hemoglobin or it could be something completely different not due to cancer and we will cross that bridge when he is more stable to.
Wow, this is hard.
Rainier's papa, Wolf, was home in Olympia where we all live when he was diagnosed. After quickly wrapping up loose ends and obtaining a leave of absence from his community college diesel mechanic program. Wolf rushed out to the east coast with the help of some friends from our Waldorf School class. (Thank you Jeff and Tiffany!) Rainier was really excited to have both his parents with him again. We also are lucky to have Rainier's grandparents in town offering extra support and car rides about town when we leave the hospital.
Rainier started his chemo treatment here in Vermont on December 27th. We will be here for at least a month during the initial chemo treatment which is called the Induction Phase. How he does in the next month will determine what we do next and where we go. The doctors factor how his body responds to the chemo treatment and how his immune system is doing among other things. After the Induction phase we will take the next part of treatment one month at a time. Then we will return to the PNW when we are cleared for travel and his risk of outside infection is lower. Hopefully that will be soon. Our treatment could realistically be about three years. Some of that time will be intensive time in hospitals, some will be outpatient visits to clinics, and the last part will hopeful just be a once a month outpatient visit for "maintenance" till he is cleared and in remission.
No matter what this is going to change our lives for the next couple of years. Rainier's immune system will be compromised in such a way that he will not be able to return to school for the remainder of the year. We will be spending a lot of our time at UW in Seattle once Rainier is safe to fly back across the country. The oncology program here in Vermont works directly with the program in Seattle. So our care will transfer seamlessly and his treatment program will remain the same.
We have so many friends we are beyond lucky in the love and support we know we will have and that makes all of this just a little easier. We know we are not alone.
Many of you have already made it clear you are ready to do whatever we need for help. Right now his health is at a very high risk as the chemo destroys the leukemia his immune system is also completely destroyed. He is considered neutropenic meaning his neutrophil count is so low his immune system is not responding. He is at risk of so many complications and infections because of it. For this first phase he can’t have many visitors in his room, there is a possibility of coming and waving at him through the door window if you are local. Wolf and Lizzie can come out and visit with friends who are healthy and ideally all have flu shots. Our hospital room is super super small and air controlled for infection risk. We will soon become experts at clean-freaky germ free lifestyles. Which is pretty wild and waaaaay different than how we live our lives. There will be big changes and we will deal with them all as they arise.
What can you our community do?
Many friends have asked about donating to our family. We are in the process of understanding what his insurance will cover, its looking like is UnitedHealthcare coverage is quite good which is extremely relieving. And we have applied for financial assistance in the sate of Vermont to cover anything extra. We will need help though. Wolf is missing weeks of work and his ability to pay rent and bills is severely impacted by being in Vermont with Rainier during this crucial time. You can help Wolf by donating to https://www.gofundme.com/wolf039s-living-expenses.
Lizzie has made another fund for Rainier and her expenses which can be found at https://www.gofundme.com/6o3kxg8.
Some of the things we would used donations for would be high quality air filters for both his homes, travel expenses from Olympia to the hospital in Seattle, so many cleaning supplies for our new sterile lifestyle, private tutors, and many other hidden costs associated with his diagnosis and the three years of treatment. We will both have to rent homes for 6-7 months in Seattle while also maintaining our homes in Olympia.
You can hold our baby in your mind and heart. Some collective woo magic never hurts. His treatment will be long and there will be many opportunities to help us in the next few years. You can get a flu shot, anyone spending time with Rainier will need one. You can educate yourself and read more about what’s going on for him at this website which is put out by the oncology program Rainier is now in:https://childrensoncologygroup.org/
You can send Rainier mail at the hospital (we plan to be here till the end of January) his address is:
111 Colchester Ave
Please consider that we are in a tiny hospital room so cards, photos, snacks and small things are best for us. Even though Lizzie's family lives here, they are winter quitters and the farm is rented out for the winter so we don’t have the home-base that we could have in the summer months. You can text photos to us for Rainier to see. He loves looking at pictures of his friends. If you do contact us please consider text/email/Internet over phone calls. We will get back to you when we can, and if we don’t we are still reading your messages it’s just a lot right now.
A lot is an understatement. This is an avalanche of unknown, grief, and fear.
We will just keep moving forward and do whatever needs to be done. Thanks for loving Rainier, his mama, his papa and our family near and far. Rainier is the most amazing kid and we are all so lucky to have him in our lives.
We are wizards from hearty stock and we will get through this.