Pit O' Germs

Sam is on the up-swing of the chemo round, meaning that his counts have largely "recovered" from whatever this chemo was supposed to do to them! It's been a little different from other rounds, because even the doctors aren't exactly certain how Sam will respond. He's been doing so well -- we continue to be hopeful for Monday's biopsy results.

Until then? We're back in our little bubble -- keeping people happy and germ-free. Unfortunately, the biggest danger to Sam at the moment is a virus. And since he could catch one anywhere (even in the hospital itself!) we are trying to use a lot of bleach wipes and hand sanitizer. It's a little like germophobia in the extreme. A virus would put a huge damper on the transplant plans, which are in the works but awaiting the biopsy results.

Did you notice that both of those previous paragraphs ended with the enormous weight that is on my mind? There's nothing I can do to rush it, there's nothing I can do to change it, there's nothing I can do except wait.....for the darn biopsy results. (See, there's a THIRD paragraph ending with it!)

Okay, so back to the bubble in which we're floating....today I tried to take the kids to the Children's Museum. (I've never actually been there, although the kids have. I have tried to convince them that only grandparents are allowed there but they stopped believing me!)

This picture, taken at the museum, says it all:

Yes, it felt like the whole place was a Pit O'Germs...so we bribed Solly with the promise of a cookie and escaped after only about 20 minutes.

So it does seem a lot safer to stay close to the Ronald McDonald House, where at least we can feel like we have a modicum of control. I know this is going to only get worse before it gets better -- Sam's ANC is actually higher now than it's ever been during a previous round of chemo. But there's something just very nerve-racking about the whole thing. (I think we'll stick to the open-air zoo...)

In the Art Room at Ron Mac -- Yael has the Art Therapy schedule memorized; I'm sure you're not shocked.

It's a great play structure in the Secret Garden!

We continue to receive a lot of packages from all of your generosity through our Wish List. Thank you so much! We have absolutely lost the capacity to keep track of how many of you have sent packages, so please accept our apologies that we can't thank you individually and our gratitude for your generosity! (Also, many of the packages arrived without packing slips, so we don't exactly know which of you made those choices! But thank you!) We love being able to be the bearers of such incredible gifts.

Also, in the spirit of teaching a person to fish, I convinced the Ronald McDonald House to create their OWN wish list, which I hope you will all bookmark and keep in mind whenever you're shopping on Amazon or feeling like you want to be generous! They actually created three lists, one for the house, one to support the Magic Room, where kids can choose a gift or toy, and one to support their newborn moms' program. Also, please remember that wherever you live (I know we have many friends and supporters all over the world!) there is probably a Ronald McDonald House or similar program. I discovered that many of these RMHs have wish lists (just search on Amazon for the one near you) and their own specific needs. I don't want to steer you away from helping OUR house, but please know that the need is all over, and we appreciate any acts of kindness done in honor of our family's journey.

And so, from our Pit O'Germs to yours....we wait, we hope, we wash our hands, and we pray. Thanks for being alongside us.

Good Experiences

Life is full of experiences and opportunities, right? There are a lot of interesting opportunities and experiences that come with a cancer diagnosis. Some of them are quite amazing -- and when you start to get excited about them, then you realize why they're happening. It does take a little bit of the wind out of your sails. Sometimes the experiences are just for Sam, but often we can involve other members of the family. Sometimes they're planned and sometimes they just come up. Either way, however, they do help to make each day a little more full of joy.

This week, our awesome friend Susie Sherman helped to set up a behind-the-scenes tour with Dr. Bruce Beehler, Deputy Zoo Director of the Milwaukee County Zoo. As you've noticed from some of our earlier posts, my family loves the zoo. Especially Sam. This was a pretty big deal! Sam and Yael (and Dad!) were joined by our friends Tricia and Talah, while I stayed home with Solly who wasn't quite ready for the tour at his age. Dr. Beehler introduced them to an octopus, took them to see the quarantined-fish-tank, showed them a 100-year-old turtle and gave them a  bird's eye view of the shark tank. They also rode around the zoo in a golf cart and learned a lot about the zoo and its animals! The Milwaukee Zoo has a train that travels around the property, and they also saw the handmade steam engine that was part of the original train project. It was pretty amazing, and Sam was overjoyed to tell me all about it. Thank you so much to Susie and to Dr. Beehler -- what a wonderful experience!

From an earlier zoo trip this week, with Sam's buddy Nick, who came to visit:

Rabbi Steve came to visit and brought along a Segway for Sam to ride on. I took a deep breath, laughed, and said ok....luckily Rabbi Steve knows me very well and he brought along a helmet! It started out with an insistence that Sam ride WITH the really-a-big-kid-rabbi, but Sam quickly convinced him that he could ride by himself. Now THAT was fun -- watching Rabbi Steve run alongside the Segway was a highlight of my week! (Thanks, Rabbi Steve!)

Sam and Dad discovered the Dave and Buster's nearby (it's an arcade), and had a few happy moments there this week too. They had one of those "experiences" when a worker at the place noticed Sam's t-shirt that says "We Don't Back Down to Cancer" -- and he opened up the tickets and gifted Sam with quite a few. It was fun and wonderful...and one of those experiences that I wish we just didn't ever have to have....but what a sweet and generous gesture from that employee!

Speaking of generosity, one of our greatest experiences in the last week has been all the mail we're receiving! Each day we get a huge load of packages and we have the delight of opening them and delivering the contents to the Ronald McDonald House staff. Yesterday, we even helped to process the DVDs -- opening them and adding identifying stickers to each movie. We are overwhelmed with your generosity, and we love the way that it lets US feel that we are contributing to our stay here at this remarkable place. We thank you! (There are still items available on the Amazon Wish List here. I think we will continue to add items as the House tells us of various needs....so stay tuned.)

I think this was just ONE day's worth of mail!

Processing and delivering toys and DVDs

(Full disclosure: Solly did NOT want to relinquish some of the toys intended for the playroom. So we played with them in our room for a few minutes and then he insisted on carrying this toy himself!)

We met this week with the doctor who will be overseeing Sam's bone marrow transplant. He said to us, "just keep doing what you're doing." He meant that we should continue to keep Sam upbeat, engaged, active, and of course, healthy. I must admit, this job is actually quite exhausting! Today Sam fell down and skinned his knee. A totally "normal" moment, but of course, it led to a great deal of internal panic not only on our part, but Sam's too. He was so scared that something terrible had happened. It took a while for it to stop bleeding, since his platelets are a little bit low, and we did make a quick phone call over to the HOT Unit just to check in and make sure we didn't need to do anything else in a precautionary sense. It just underscored the precariousness of our situation. For the most part, things feel "normal" -- the chemo seems to be having little negative effect on Sam. So we have to hope that inside the deepest recesses of his cell structure, it's doing its job....and in the meantime, we just try to experience as much as we can.

Mudwrestling and Yoga

I'm kidding about the mud wrestling. But only a little. 

When Sam's labs came back on Friday, his ANC was so high that a friend suggested that it actually was a possibility! But in lieu of mud wrestling, we tried out a few other immunity-challenging activities:

Feeding the goats at the zoo:

Fishing:

(With thanks to the Gerstein family for helping Sam to fish in the rain!)

Also this week, Sam got a visit from Danny, a yoga teacher who specializes in integrative medicine. His visit was facilitated through the Urban Zen Foundation (a project of Donna Karan) and it was so delightful to have him here to give Sam some personalized yoga and meditation instruction. Whenever he has these amazing opportunities we are grateful yet again to all of you who help make these connections possible. In particular, thank you to Sandy and Gillian. 

I'm sure it wasn't the first time yoga has been practiced at RonMac but it was still pretty unusual for them to have a visiting yogi!

We are in this waiting-holding pattern that in some ways is making me crazy. We can't know if the drugs are doing their work. We can't know what is happening inside the deep recesses of Sam's inner bone marrow. So we use the medicines at our disposal to make each day a blessing -- cheese toast, laughter, stretching, fresh air, silly stories, outings, and a lot of family love and togetherness. At the moment it is all we've got....

Heat Wave!

So things have been going rather swimmingly over here at Old McDonald's House.
Even though Sam isn't able to go swimming....(that's a little cancer humor for ya...)

And man has it been hot! So there's been a little of this:

 Some silliness in the art room:

Thanks to the Tatelli family for this awesome t-shirt

A lot of napping...

David came home for just two nights between sessions at OSRUI. All of the kids were overjoyed to be together. David commented to me, "I really like it here (at Ronald McDonald)" -- and then he quickly clarified, "I mean, I don't like WHY we are here. But it's really nice here!"

Yep, that kinda sums it all up for all of us. We are very much making the best of a difficult situation. Luckily, Sam is feeling well. The side effects of these chemos have been minimal so far, and we are just enjoying every day as much as we can. Sam has regular checkups in the hospital clinic and receives daily medicines in addition to the oral chemo he's taking in order to maintain his health and well-being. So far...so good.

David has since returned to OSRUI to finish out his summer there. I think we're all jealous! (Well, maybe not on these super hot days...)

We're even hanging things up on the wall and making our room feel as homey as possible.

This arrived from the Cook family and we are totally in love with it! Thank you!

Last year we embarked on a couple of projects to collect things for both the HOT Unit and the MACC Fund Clinic. Since we've arrived here at Old McDonald's House, we've done the same thing here. (We started by sharing this out on Facebook, but thought we'd share it with those of you who are blog-readers-only!)

We noticed that there are movies to borrow but their collection was relatively out of date. Solly is in love with the playroom and noticed quickly that while there was a train table and a lot of tracks, there weren't any trains to zoom around! So we put together a wish list on Amazon with those two things in mind. We have been overjoyed at the response and we are so grateful to all of you so far who have helped us out and allowed us to feel like we are making a difference even as we are the recipients of such generosity within the House. The Wish List is here at Amazon.

Here's one of the deliveries:

 And Solly had to help test out the trains right away:

And that's where we are. We have to wait out the whole cycle to see how it's working, but we are starting some of the process for the transplant in a VERY tentative way, hoping that the results are moving in the right direction. But truthfully, we won't know until we know. While that's totally frustrating and anxiety-producing, there's so little that we can do beyond keeping everyone happy and healthy...and so we wait and hope and zoom trains and watch movies and draw pictures and swing on the swings and read books and....pray.

Quiet is Good, Right?

I really like when I have almost nothing about which to write blog posts! We had a lovely and uneventful weekend medically, aside from some outpatient chemo that took place on the HOT unit (a little weird walking in but also nice to say hi to all our friends!). Also, Sam started his oral chemo (well, technically it is a drug that supports the chemo) and the pill-taking had a lot of anticipatory anxiety associated with it. But when push came to shove...he swallowed it like a champion! I was so impressed and relieved. I think he was too. 

And that's about all from here....a few more days of infused chemo and then we wait and hope and pray...while keeping our little crew busy, healthy and happy. It sounds so simple as I write it but of course....you know how real life is! As I type this they are working out their bedtime wiggles....

A few pics of our last few days...

Sam playing a game with his clinic buddy, also named Sam! 

Weird empty room for chemo

Even superheroes with cancer have to load their dishes.

Playhouse at Old McDonald House

Current food obsession: cheese toast

The Sommer Four....love this. 

Wishes

Today was the second day of chemo and it was relatively uneventful. It was also the last day of yoga camp and let me tell you, that might have been one of the greatest things we've ever set up for Sam. He adored it, he learned so much, and he made some lovely friends (so did I!)

He's so disappointed that it ended! I'm looking for a kids' yoga class so he can continue. 

Life at the Old McDonald House continues to be an adventure, including a visit from the Big Guy himself. Sam was impressed when he did a magic trick and Solly was just fascinated and asked a bunch of silly questions like "where are your teeth?"

Tonight we went for a little walk and dinner with our friends...Sam made a wish in a fountain. I know he wished for "possible things" (his words), because he told me so. He wants to have his friends around and he wished for David to come back soon....

I'm sure all of you and all of us share the same wish....it's a little bigger than a penny in a fountain, don't you think?

Warrior and Rock

First, a few words about life at the Ronald McDonald House, or, as Sam calls it, The Golden Arches Motel. Or...as Solly calls it, Old McDonald House.

It even has a theme song (if you're reading on an iPad you might need a real computer for this one):

But I digress. It is lovely, with an art therapy room, a play room, a garden with a wonderful play structure, and much more, including a delivery of donuts tonight from a local bakery...

Out in the garden

So basically, every time you feel guilty for driving through McDonald's with your kids, think of us and feel less guilty :-)

There's also art and music therapy on a regular basis...even for Solly!

Sam and I had to be at clinic this morning at 8:30am, and it was clear at 8:15am how truly lovely this place is. I can actually SEE Children's Hospital out our windows. We left at 8:22am....

Today they began one of the two new chemotherapy drugs. These drugs are a little new, a little bit unusual, so they have been a little trickier to acquire. We're still waiting on one of them, called Sorafenib. Today Sam had his first infusion of Azacitidine, and he will receive daily infusions (IV) for seven consecutive days. So at 9:48am, we'll leave tomorrow for our 10:00am appointment!

It's boring in clinic sometimes so I get to play with fun photo apps...

Sam is doing a great job of holding onto his hemoglobin and platelet counts, which means that he didn't need any blood transfusions today. This was most exciting for Sam because it meant that he would get to his yoga camp on time! 

Warrior

Rock -- you might know this as "child's pose" but um...he is a child. So they call it "rock."

 Also this week, Sam got to paint a little pottery following yoga. It's a little like being at summer camp...only not so much.

So now we continue, we move forward. Each day brings new adventures and challenges, each day we continue to be grateful for Sam's relative good health and for the blessings of family and friends.

Many of you have asked for our mailing address. Please don't feel that you have to send ANYTHING! But I'm going to give it out here otherwise I spend lots of time giving it out individually anyway. You people are (ever so kind and wonderful and) persistent! Please remember that almost everything here is handled by volunteers so let's not overwhelm them, okay? thanks!

Sommer Family
c/o Ronald McDonald House
8948 Watertown Plank Road
Milwaukee, WI 53226

Up in the Air

I am a person who likes concrete, well-formed answers.

At the beginning, they used words like "road map" and "time table." Sure, they told us that "anything can happen" and "be prepared to be flexible." They told us that. And we were. There were hiccups in our early road (um, c.diff anyone?) but most of the time...things went according to The Plan. I like that. I'm an orderly sort of gal. I like having my ducks in a row.

Now?

Yeah, it just doesn't seem to be working that way. It's all too....off the beaten path. Remember how I said I wanted ordinary and run-of-the-mill cancer? Sigh.

We knew that Sam would be starting a new form of chemo....this week. Due to the holiday weekend, I wasn't sure exactly which day we would start. It is slightly different and required a little insurance pre-authorization. We're not concerned about the insurance, it was the holiday that got in the way a little bit. So Sam and I arrived this morning, knowing that we were there for labs and probably blood products (like platelets) but not expecting chemo. I was, however, expecting answers.

Guess what? (I'm sure you have guessed from the start of this post...) No answers. "Wednesday, we think. Someone will call you." Hmm...I guess I won't be making any plans.

On the upside, Sam didn't need any platelets! So after just about an hour of waiting for the labs, we were dismissed. Hooray! We headed over to the Milwaukee Public Museum for a few minutes with the butterflies....and then Sam went to Yoga Camp. Yep, you read that right -- I heard about a Yoga Camp for 6-12 year olds at the yoga studio that I've been visiting, and I thought it sounded just right for my little flexible gymnast. And was he ever excited. (It also helped that at the time, there were only 4 kids signed up so I knew that his exposure would be minimal, and the doctor said yes!) He loved it. It's only 2 hours so I sat outside and read a book. He can't wait to go back tomorrow! Who's complaining?

Why yes, the Tatelli family DID find this amazing shirt for my little Ninja -- he put it on immediately and wore it to YOGA. He will actually pull it over his head for you but I thought this face was too cute.

And then came a great call. While we have loved staying at Hotel Maison de Casa House, we never imagined that we would take over my parents' (on-the-market) house for this long. We've been on the waiting list for a "long term" room at the Ronald McDonald House and today we got the call...a room had just opened up and did we want it? Yes!

So I type this to you in Room 214 at the Ronald McDonald House of Milwaukee*. What a phenomenal blessing that this place exists. (And doesn't it help that Sam regularly eats those nuggets and fish sandwiches!?) For the time being, the Golden Arches Hotel (as we're calling it -- Sam named it) will be our new home. That doesn't mean that I'm not headed to Maison de Casa House tomorrow morning for coffee, mind you! (Also there are some logistics with Yael's camp, so she might keep staying with Bubbie and Zeyde for a little while, and we plan to visit regularly...like tomorrow morning!) This couldn't have come at a better time. We're still totally unclear as to whether the chemo will be administered daily in clinic or visiting nurse, how the weekend will work, and, of course, what its effects on Sam will be. So being close to the hospital is a necessity as well as a blessing.

In the future, I will try to share more about what life at the Golden Arches Hotel will be like. This is the communal kitchen that is right outside our room -- we share the space with the other long-term families, but we had it all to ourselves for game-and-snack-time before bed tonight. 

(I didn't even tell you about our little visit to OSRUI for Shabbat lunch, or the time we spent with our friends at their rustic cabin in the mosquito-infested woods of Kettle Moraine, or the visitors swooping through Mequon who came and gave us love, or just the day-to-day of park, zoo, snacks, naps, etc. You'll forgive me...)

So we continue on this uncertain path. I'm trying not to scream in fear and frustration -- why are we waiting!? Each day that it doesn't start is another day for the leukemia to gain a stronger foothold. And each day that it doesn't start is another day longer until he can be in remission. But I also know that our doctors are wise. They are patient -- far more patient than I am. They know that these few days don't matter as long as the treatment is the right one for Sam. So I console myself and soothe my frustration by knowing that they are working tirelessly on behalf of my little boy and my family...that the doctors too are losing sleep with worry for my son. And I breathe and hug and hold and trust and and love and pray. And that's all we've got for now. 

Signing off from our snug little den in the Golden Arches Hotel....with love.

*People are always asking what they can do to help us. When you help the organizations that help us, it means so much to us. RMH has scads of volunteers and they give us food and all sorts of stuff. Our RMH has a wish list, and wherever you are, I'm sure there's one near you. Even if you don't help out our House, know that families just like us are receiving amazing love and care at RMHs near you. I have suggested to so many families that they sponsor a meal at a RMH at their destination-event; it is so humbling and awe-inspiring to be the recipient of such generosity as well.

Ninja Leukemia

Sam and I have had many conversations in which we talk about his leukemia as "ninja." It is sneaky and stealthy and hides well. It is strong and hard to get rid of. He has renamed his leukemia -- it's no longer AML, he says, it's AMNL, the "N" for ninja. (Yes, I know that ninjas are often good guys but they are also often villains. Work with me, here, okay?)
 
The "truth is in the marrow" and the truth is that Sam's marrow still has significant leukemia cells.

The ninja leukemia hasn't gone away.

For those of you who are into numbers, he has over 50% leukemia load in his bone marrow. 

So what's next? A new plan of treatment, of course. At the moment the plan is for two drugs, used in combination, over a seven day treatment period. Unless things change, this will be done outpatient. These drugs are primarily used to treat adult AML, which is a far more common form of AML. As I've said before and I continue to say, we are in a very small minority cohort. There are not that many kids each year who get AML, and who continue in treatment the way that Sam has done. We are immensely grateful that he doesn't have any other significant health issues, which keeps our treatment options open. Ultimately, the goal is still bone marrow transplant, which is the only "curative" treatment for Sam.

This is the information we have today. On Friday we will have more details of the plan, including how it will work to do seven days of outpatient chemo (hard to do outpatient stuff on the weekends) and how oral chemo works. The details might change, but the final answer, that he isn't ready for transplant, won't change. (And before you might ask, yes, we are consulting with doctors all over the country, we are looking at alternative kinds of transplant, we are leaving no stone unturned.)

Sam is fine. He had an allergic reaction while receiving platelets on Tuesday. It was the first time any of my kids have had an allergic reaction to anything, and its relatively minor nature gave me a far deeper appreciation of my friends who carry epi-pens for their kids. Tightness of breath, hives all over his body, a spike in temperature and blood pressure...it warranted a whole roomful of nurses making sure he was okay and a really scary hour for me. Benadryl worked quickly to reduce the reaction and he didn't need epinephrine. One of the nurses said to me, "wow, you're so calm." In retrospect, I appeared to be calm because I didn't know enough to be scared! (And he was talking, so my lifeguard training reminded me that he had an airway.) I don't think they'll ever start an infusion of platelets without my fear again. This one allergic reaction, however, doesn't mean that it would ever happen again, but he will always be pre-medicated before receiving platelets just in case. Luckily, we could laugh about it a couple of hours later with the nurses, as they pointed out that this is just Sam's way of keeping us on our toes. Riiiighhhht......

Sleeping off the Benadryl

So I repeat, Sam is doing fine. He feels pretty well. He ate three bowls of yogurt for breakfast! His counts are quite low, so we're hiding out at home for a few days while we wait to see how he feels and does with these low counts. On Friday we'll return to the clinic to finish up the platelet transfusion and meet with the doctors about the new course of treatment, which will most likely start on Monday. There's no reason to wait, there's no reason to let the leukemia grow.

This is not where we wanted to be. This is not what we wanted to be doing. Each day that his leukemia sticks around, it brings with it the possibility of infection and side effects. Each day is scary.

But we are not daunted by its ninja stealth...and we continue to march forward. Our doctors have plans in place, and they continue to give Sam the highest standard of care. We are scared but we continue to buoyed up by Sam's energy and delight in the simple things in life, like a new umbrella on a rainy day. We continue to be grateful that our family is together and that we have all that we need in so many ways.

This week we finish reading the book of Numbers in our Torah reading cycle. At the end of a book of Torah we say "chazak, chazak, v'nitchazek" -- "be strong, be strong, and let us be strengthened." The Torah tells us over and over again that we should not be afraid, and we should be "chazak v'ematz" -- "strong and courageous." And so we continue to be strong, to find the courage within us to move forward each day, to know that we are not alone in this terrible process. But the Torah doesn't promise that it will be easy. It just tells us to stick together and keep going...and so we do...

Not quite enough for a comb but he's close...