Some burning questions that have come up....and some answers... (in no particular order)
What's up with the Popsicle sign?
|Part of Sam's "wall"|
Sam does not like popsicles. I know that seems a bit odd, since most children do, but he does not. On our first time in the hospital, in the emergency room, they offered him popsicles many times. He usually responded with "no" or "no, thank you." As we were being discharged, the kind nurse said, "would you like a popsicle for the ride home?" and with gritted teeth, Sam replied, "I. hate. popsicles." So Uncle Josh made him a sign. So no one, however well-meaning, would offer him a popsicle. (Unless Uncle Josh is there. Then all popsicles can be given to him.)
Why the Superhero theme?
Many people in the hospital were trying to encourage him out of his initial pain and general funk at being in the hospital (no kidding) and often called him "superman Sam." He does like superheroes, but it's not an obsession. But as Tante Anne says, "everyone likes a gimmick." I didn't mean to start a gimmick, per se, but it seemed to be a good name for my little superman. Sam likes bugs and frogs and turtles and animals and (angry) birds and games and puzzles and books...but he is using up a lot of his energy on healing. Being in the hospital is hard work. He really does seem to have superpowers.
Why are you in Milwaukee if you live in Chicago?
Much of that was answered in this post
, but the short answer is that Children's Memorial Hospital was moving to its new location on the day that we went to the hospital for the first time. We were sent up here instead and since I'm from Milwaukee, it seemed to make a lot of sense. We have a great team in place here.
Can I send him a package?
You can. But maybe....you can also hold off. We are so very blessed to have an enormous, loving community. THANK YOU for everything so far, and we know for everything in the future. All the staff at the front desk know who Sam is because he is the kid who gets a LOT of mail. So if you are thinking of sending him a package....maybe wait a month or so. This is going to be a long haul.
Which leads me to....
How long will you be in the hospital?
Sam has AML, which is a trickier form of childhood leukemia than the more common ALL. (Feel free to google, but like I said, don't tell me
.) The course of treatment is approximately one month of inpatient treatment (10 days chemo followed by about 25 days of inpatient observation to recover his counts). Then we will have a short break, and start again, for another month-ish. (Assuming that all goes well.) Somewhere in there, we will find out if Sam is in need of a bone marrow transplant. So far, they just don't know. This is all subject to change based on how Sam responds to treatment. Typically, without bone marrow transplant, there are four rounds of chemo. With bone marrow transplant? Well, I haven't asked. Because frankly, that scares me.
What do you need?
Right now? We don't need anything tangible. We are so grateful for the meals and assistance at home. They are wonderful and helpful. The nurses are handling our needs at the hospital. Sam needs time and patience. We may need more in the future. We continue to need your love and supportive messages, cards, letters, calls, etc! They are amazing and helpful and we love them. I personally like the joke texts...even the inappropriate ones that I can't share with Sammy.
So what could we do if we must do something?
So many people want to help us and we are so appreciative.
Thank you. You mean everything to us.
Please feel free to contact Am Shalom 847-835-4800 or B'nai Torah 847-433-7100.
There's a bone marrow/blood drive on Thursday (tomorrow) at Am Shalom. Go to www.amshalom.com
for more details.
Prayers help too.
Sam's Hebrew name is Shmuel Asher ben haRav Pesah Esther
Pray in whatever language you know and love. God will understand.
Sam is in a world-class facility, the Children's Hospital of Wisconsin
If you are interested in making donations of money or items to the hospital, here is their wish list
. If you're looking for a project, here is their "Create a Project" idea sheet
(This is one of my favorite mitzvah projects to suggest to kids...I
never quite imagined that we would receive these kinds of things!) I'm sure we could come up with countless other projects too. I know that many Bar and Bat Mitzvah students at Am Shalom and B'nai Torah (and probably other synagogues too) are on the case.
We are being hosted by the Ronald McDonald House of Milwaukee
It is a gorgeous facility. I have, in the past, brought meals to RMH in
other cities, and it's a wonderful mitzvah. This RMH has a wish list
We are truly blessed to have so many people who want to help us, and we
want to make sure that you know how lucky we are to extend our love to
the RMH and the other families who are there as well. What an amazing
Other incredible people are doing Relay for Life
or Team in Training
in Sam's honor or any other number of things to raise money and awareness for leukemia (I don't even know!). Register to be a bone marrow donor
. Give blood or platelets
. These things might not help Sam directly but they do mean a LOT to us and I know that they will help someone. We are so honored and amazed at everything that is being done. Thank you.
How are the other kids?
They are doing okay. David is very excited to head off to OSRUI for six weeks starting on Monday. I thought for a brief second about giving you all his address but considering the outpouring for Sam, I can't imagine that OSRUI's mailroom could handle it. Yael is loving her daycamp and Solly is...Solly. David is learning a lot about leukemia and asking a lot of questions, and Yael just misses her best friend. There are posts about the other kids on my regular blog
How are you?
We are okay. There's a lot of back and forth between the hospital and home. There's a lot of communicating that happens via text message and FaceTime. We miss each other. We miss our family togetherness. We are sad that we won't be going to camp together this year. We are sad that our summer isn't the summer we had envisioned. We are praying for Sam and holding faith in our team of doctors and nurses and other health people - each and every day we are focusing on healing and keeping it all together. We are trying not to be scared and trying to focus on positive outcomes. We take it day by day. Or hour by hour. Or sometimes even moment by moment. We are still dreaming and planning and breathing....
Other questions will be answered as they come up ;-)