Saturday, August 31, 2013

Ouch - Day +3 and +4


We've just been so lucky up until now. Sam has largely sailed through his treatments, with such minimal painful side effects that I honestly and truly did not want to believe Dr. M when he described the terrible mucositis that Sam would experience.

And he never ever says "I told you so" to me -- but he does feel that Sam is doing exactly what he should be doing. Even though it totally and completely sucks.

Sam has quite a bit of pain in his throat and his tongue is all sore and red, with large ridges that look like he bit his tongue over and over again. It hurts to talk, which is hard for him but a great excuse not to talk to the doctors! He still has the PCA (that's the morphine he can control) and special mouthwashes, and he took a lot of naps over the last two days.

Naps make the time go by faster, I think. For him, at least.
Usually he's napping while waiting for David to show up.

In addition to napping, there's been a lot of iPad-game-playing. I know that it totally helps to distract from the discomfort and the pain so I'm not doing nearly as much limiting as I usually do. He went through four whole levels of Cut The Rope today! It's good brainwork and it's good to see him focus on a challenge...even if it is screen time!
He has a set of exercises that the Physical Therapist left for him, and he's actually been great about getting up and doing them. He's mostly confined to the room, but after "dark" -- meaning, after 8pm, when the lights are turned down in the hallways and all the visitors have left -- he is allowed to make a few laps around the floor. On Friday night, he didn't feel up to taking a walk. But tonight, I cajoled him out of bed to stretch his legs with the promise of "just one lap!" and when we finally got out the door of the room, he looked at me and said "let's do six." I was so proud of him! I could tell that six laps tuckered him out....but he did step at a day at a time....moving forward.
And so it goes...

September is Childhood Cancer Awareness Month.
If you're reading this blog, I know that you are aware!
I also know how silly it is to have ONE month of awareness. 
We are aware ALL the time.
But nevertheless, September is the month --  we are just one story in a terrible sea of stories about childhood cancer. Over here on my regular blog there are some links to posts that you might find interesting...

Thursday, August 29, 2013

And So It Goes - Day +2

Sam spent most of today in a good mood.
Which is great, considering that today he also expressed that he was in pain in his throat and back.

We are constantly being remind that this is "to be expected." The high doses of radiation and chemo that Sam received this time around were even higher and more toxic than any he has received before. They are completely prepared for mucositis, which is an inflammation of the mucous membranes that line the digestive tract (from top to bottom...). Sam suffered from this in his very first round of chemo last year but has never really experienced this side effect since then. The pain can be quite intense, we're told, and he was feeling it. They put him on a morphine drip and the basal rate can be supplemented with a button that he can press when he feels a need for it (known as PCA, or patient-controlled analgesia). He understands how it works and I think he likes the control. And it seems to be working well. His pain was very well managed today. (Whew.)

It's a little bit heartbreaking to watch this, since we've been so lucky and carefree during most of the other treatments. I was hoping that the doctors would be wrong about this part. After all, they've been wrong before about how Sam would respond to treatment.

The doctors are, however, really pleased with him. He required blood and platelets today, which again, is to be expected. His own marrow won't start to work to make red or white blood cells for a long time. We've been told 10-20 days for engraftment, for the new marrow to finish unpacking and measuring for curtains and switching over its mailing address and figuring out where the bathrooms are and repainting the dining room and just move in already! (Sam can't leave the hospital until we have full engraftment...along with, I'm sure, some other criteria.)

In the meantime, we wait and reallyreallyreally hope that no viruses (or bacteria, but viruses are particularly bad) find their way into Sam's vicinity. Many of you have asked about how we're handling visitation and how they are letting us have visitors and how it all works. At CHW they walk the fine line of balancing patient spirits with health concerns. They know that visitors bring joy ("more joy than germs" we were told at the beginning) and that is important -- hugely so -- to Sam's well-being. I do believe, also, that they trust us to make good choices on Sam's behalf. We are being incredibly careful with who visits and how those visitors are screened. We all shower and change our clothes before going over there, especially after school. We are currently limiting Solly's visits, since he's probably being exposed to stuff at his preschool. David is the one that Sam adores and so far, he has been great about it...I'm so proud of him.
Teaching Sam how to use the Rainbow Loom that came today! (Of course, also playing iPad games)
So that's where we are. We have very little to which we can compare this experience, and we trust our doctors to tell us that we are on the right track. So far, so good. Today one of the doctors told me that Sam was "not the sickest kid on the floor" and that makes me grateful and glad and comforted (and of course, sad for those sicker kids).  

Sam continues to be proud of his Marrow Day date -- his new birthday. He mentions it when people ask and he loves that other people share the importance of August 27th with him. He has told me of nurses with that birthday, of friends with that anniversary, and how special it is to now have two birthdays. The staff made this sign for him (they do this for all the kids, isn't it sweet?) and he likes to point it out to people, since it's hanging in his room.
And that's where we are. There's a lot of maintenance of Sam's health as we wait, and that's the task right we continue to take it one hour to the next, one day to the next...
If you're new around here, don't be worried when you don't see posts from us tomorrow night. We don't post on Shabbat (Friday night to Saturday night) so you'll probably see a catch-up post on Saturday night.

Wednesday, August 28, 2013

Oh the Places We'll Go - Day +1

I guess I'm still holding my breath. I am amazed Sammy has any breath at all. He hasn't really stopped talking since I got here at 1pm. Phyllis said it was a quiet morning where Sammy slept in a little and no pictures from the morning. I think after yesterday's waiting and excitement, and the power of the moment, that there just aren't enough words to describe the experience. The whole week has been amazing.

Monday our good friend who started this whole journey with us, Nurse LA, visited on her first day back to work after maternity leave. They loved hanging out and ribbing each other just like old times.
Yesterday was such a hurry up and wait day. I don't know what I expected yesterday or today. I should know better than to expect anything. Sammy was, well Sammy (although he did seem a bit taller today). He was glad to see everyone today. He loved hanging with grandma all day and is looking forward to finally being able to use the quilt she made him.
He is glad to have a new birthday to celebrate in addition to his biological birthday. He loved opening up his new Hex Bugs (Thanks to Tricia!!) that crawl up their Hex Bug Habitrails. The amazing Adam Kahan came to delight Sammy with close magic (card tricks and the like) and his guitar and beautiful voice. Sammy loved watching Adam perform his magic tricks and talked about some of the magic he'd learned during the last several months. They spoke of the tricks at hand and how they could improve those tricks and Sammy marveled at Adam's ability to draw the seven of hearts from anywhere in the deck.

After Adam left Sammy told me he is ready for a job since he wants to be able to earn enough money for gems in his games. He then told me he would learn to design games or be a game tester for the companies he loves so that he could get all the gems he wanted. When he tells me he wants a job, he hates that I tell him to write a book about his experience. He thinks it is too hard for someone his age (and doesn't realize he'd have a little help if he asked). No vision right now. I mean, can you say "movie rights?"
Rabbi Jen G made sure Sammy would be ready if he chose a career directing the film of his life story. She sent him this really cool scene marker.

And then it happened. The hour had arrived. The bells rang six o'clock across the commons. And all was still for a moment as Sammy...prepared...for his last bath to protect his skin from his chemo last week.
The moment we all (especially me) thought would never come had arrived. We carefully shielded his central line and PICC line and slowly dipped the boy in his final oil bath. And before we knew it, it was all over. Once again we'd survived 21 baths in 7 days. We'd managed to only remove a modicum of skin with tape and the aquaguards.
And the crowd went wild!!!

Sammy's favorite visitor in the world arrived shortly after the last bath. His brother David walked through the door carrying some of their mother's Monkey Bread (made with real monkey brains...okay, not). There were moments where I thought that David could never arrive sooner because Sammy asked all afternoon when David would show up. They talked about iPad and games, watched a little SpongeBob and never talked about the transplant at all. Just two brothers hanging out as if it were just another day in their life. They sat close. They talked. They swapped ideas. And nothing else mattered in the world. They shared the monkey bread and enjoyed each other's company. And all was as it should be in the world. 

For me it is hard to imagine the difference between yesterday and today. Last week was a living hell, harder to live through and watch than anything else we'd experienced. Yesterday we pulled into the station and today we disembarked. We are all looking around in bewilderment a bit at this new and incredible land. Nurses and doctors are quicker to smile once in a while. The joy is palpable. There is still a long way to go, but we breathe different air today and breathe differently than we did yesterday. And believe me when I say, we don't even know what time or tomorrow will look like. Each day is a new day. We hold our joy in one hand and our trepidation in the other and we try not to allow either hand to fill up too much because we just don't know what each day will bring. 

Our gratitude knows no bounds at this point. So many people carried us and sheltered our spirits and bodies to get us here. So many angels crossed through Sam's doors to make him laugh and smile, and assure him how much he is loved and thought of in the outside world. So many angels who couldn't come in body traveled in spirit, sending messages and missives to buffer Sam's hardships and lift his lows. We will always need you, but we all hope that the days of celebration will out number the days of worry. 

So thank you. Feel our love and gratitude wrap you all up and await all the pictures of our smiling, gleeful Sam as we wander around this new land, this new life of ours. 

Tuesday, August 27, 2013

Will You Marrow Me? - Day 0

Today was just....waiting. All day long...waiting.
We passed the time doing crafts, watching movies, walking a few laps.
Yeah, you don't care about any of that, do you!?

You want to know about the transplant.

SuperMensch gave a lot of cells. Which is amazing.
Donor Superpowers: Willingness to donate, and ability to give a lot of cells.
The very small downside of this (really, not a downside at all) is that it took all day to process the cells.
Do you hear me complaining? No way. This is a good problem to have.
We had hoped for sometime around 7pm, but by 7:30pm we heard from Dr. M that the processing was still going on. He looked practically giddy at the number of cells, so we knew it was a good thing. We had a short discussion about how many cells would actually go into Sam, and of course we all realized that since he was debating 15 million or 20 million....we should settle at 18 million.

Of course. 18....

(By the way, that's 18 million stem cells per kilo of Sam's weight. Don't try to think too hard about counting cells, it will hurt your brain.)

After that, we knew it was going to be a long night, so Sam settled down for some more body art:
You can actually still see my bruises...don't look too closely.
We waited and waited. 
Finally at about 9:00pm, we officially were told that 10:30pm was the time. So they started the pre-medications for the transplant. Essentially, it's a blood transfusion, so they give Benadryl and Tylenol in advance just to make sure that no one has any reactions. They don't take chances with this bag of riches. Also he received one last high dose of steroids. All of these things are part of the whole cocktail of anti-rejection meds he's been on for the last few days to prep his body.

A little after 10:30pm, the cells arrived.
Sam met them:
And said hello to them:
And then he was all hooked up. These cells don't go through a pump, it's simply a gravity flow into his body, directly into the line.

Then we offered a prayer.
After much consideration and adaptation of other prayers and words and thoughts, this is what we said (and with apologies to all those from whom I adapted these words -- I don't have my sources!)

This is the day that God has made. Let us rejoice and be glad in it. (Psalm 118)

Wondrous God, Creator and Sustainer of Life,
We come before You, humbled by Your great gift of life. In Your infinite love You have planted within us tiny cells with the power to heal and renew. We are grateful for the miracles You have given us through medical research and the skill of our medical team and through the generosity of others and our donor in particular. Thank You for the potential and possibility of the miracle of this day. Grant Sam and all of us hope and patience as we await his restoration of body and spirit. Bless this day and every day with strength, courage, love and peace.

Blessed are You, our God, Ruler of the World, who has bestowed every goodness upon us.

Then I asked Sam if he wanted to say anything to the cells. Did he ever!

Here he is, in the photo below, chatting up his cells. He did that for quite a while. He welcomed them into his body and said he was going to give them a "nice family to live with." He told them, "I hope you like working with me," and he asked them to make themselves at home. Then he told them that once they are settled, they have to "go to war." (I gasped, I had no idea what he was talking about!) "Please go to war against the leukemia and when you win I will give you a big party and you can party until you're all partied out." I kid you not, he went on for quite some time talking...and then he held the line in front of his face and said the Shema to the cells. I nearly fell off the bed, I was so filled with amazement.
And then just like that, half an hour passed, it was over.
Cells in, vital signs checked over and over again to make sure he was alright.
His blood pressure went up a bit, which is very common and expected. A little medicine and he was down for the night:
Now we wait...for the cells to settle in and make little homes for themselves....more on how the engraftment process works and all that fun stuff when I'm more awake.

Today we felt an immense outpouring of love and prayer from the whole wide world. Thank you thank you thank you.

This is the day that God has made. Let us rejoice and be glad in it. 

Monday, August 26, 2013

Milestones: BMT -1

I don't know when it started happening but we sometimes say "let's go home" when we mean "let's go to the Ronald McDonald House, our home-away-from home."


When we first came to Milwaukee, it did feel a little like a homecoming. I mostly know where things are. I know how to speak the language (bubbler, anyone?) and I'm always running into someone I knew from growing up.

When we decided to enroll the kids in school, I had no idea how many people we would know in their new setting. People from so many parts of my being at home.


But it's not home.
No matter how homey we make it.
No matter how many times we slip up.

But the old adage, "home is where the heart is," is so very true.
We are all together.
We are all in this together.
One room, two rooms, however much space we have....

Today two of the kids started school. Another one starts on Wednesday.
They know it is temporary. But it's still real.
Everything about this is bittersweet. What an incredible blessing for my family to be together in Wisconsin. We feel so welcomed and embraced by the Milwaukee Jewish Day School and Gan Ami Preschool communities and we are so very thankful to everyone who has made this possible for us. We miss our friends at Oak Terrace and Northwood and Lutz...but we know that we will return as soon as we are able.

But it is bittersweet. I'm a total sucker for the first day of school. I love the newness, the possibilities, the potential in a brand new year. I love the sharpened pencils and the shiny new folders. I love the ritual of beginning....(I just realized that I pretty much repeated the paragraph that I wrote last year when Sam began school.)

Last week, I watched on Facebook as my children's classmates in Highwood started school and I didn't feel sad, because I knew that my kids were still going to school. But today...I felt the heavy weight of the fact that instead of joining my children on the first day of school (that honor went to the Abba), I stayed with Sam while he had his PICC line in. A different kind of beginning, don't you think? Something new, something challenging, not quite a sharpened pencil....I am not quite sure how to answer when people ask about my kids -- yes, I have a second-grader. No, he's not enrolled in school quite yet...but these coming days and months will give him so many more years to have first-days-of-school, right?
Now he's all ready. Four lumens, prepared for tomorrow's Big Event.
Today was considered a "rest day." No more chemotherapy, but he did start a continuous cyclosporine drip. This is the main drug that will prevent rejection of the incoming bone marrow, and I am sure I will tell you more about it in the future. 
In the meantime, Sam hung out with Grandma today. He also got special permission to have her bring him some thin crust Lou Malnati's pizza, his favorite. Then he realized that his taste buds just aren't what they used to be...and that made him a little bit sad. But not too sad to eat four pieces. Woo hoo!

Sam and Grandma sharing their dragon games
Today was The Big Day for SuperMensch, Sam's donor. Today he finished up his course of filgrastim, to stimulate his blood production, and he underwent the procedure to extract his cells for Sam. I understand that he didn't have the marrow extraction (surgical), but instead had his peripheral blood stem cells removed. This is a lengthy process that requires him to sit very still with IVs in both arms. (Want to know what it might be like for SuperMensch? Here's a video.) This method of collection allows them to properly deplete the donated blood of its T-Cells in order to prepare them for Sam (remember, it's a T-Cell Depleted transplant, so you gotta deplete!) -- the processing is being done now and will be done by late afternoon or early evening tomorrow.

I am sure our SuperMensch is home by now, and resting. I hope someone brought him an awesome dinner and that someone else is tending to all of his needs. I hope that he posted something amazing on his Facebook page like "Today I saved a life" and I hope that everyone clicked "like" and wrote things like "LOVE THIS!" and that someone bought him presents and that people throw confetti at him when he goes back to work or school. I hope he takes tomorrow off and tells people that he deserves a vacation day because he GAVE LIFE TO MY KID.

Sam's transplant will actually take place sometime in the evening, when the cells are properly prepared. I know from most people around here that it can actually be very "boring" -- but how on earth can we be bored by this amazing event? Tomorrow is Day 0.

We are ready.

Sunday, August 25, 2013

By the Numbers: BMT -2

Sleepy Sam took a nice afternoon nap
9 baths left in this cycle -- just 3 more days!
8 hours Sam needs to be NPO (nothing by mouth) before his procedure tomorrow morning*
7 is at least how many times each hour that he wishes he could have "Chicago food" -- best anywhere**
6 laps around the floor
5 dollars spent to rent the movie Epic from Amazon streaming (= one heroic mama!)
4 anti-emetic medicines to keep Sam from feeling "pukey"
3 baths taken today
2 hours is how often they need to check his urine output (and with all those fluids, he's actually offering output more often...)
1 more day before DAY 0 -- transplant day!

*tomorrow Sam is having a PICC line inserted in his arm. This is a semi-permanent IV line to give them more access points for the various supportive meds that accompany BMT. It's a LOT of meds. He will have a total of four lumens, and some meds can double up. He's on an inordinate amount of fluids to keep his kidneys and bladder flushed and an inordinate amount of medicines to combat the various side effects of BMT.

**Sam is now generally restricted from restaurant food. Which makes schlepping food from home even more unlikely. Poor kid. It's frankly our parenting fault. How dare we feed our kids local restaurants instead of easy-acquirable chain restaurant fare?!

Pushing his MonsterPole around the floor - six laps
Really just took this picture so you could see the back of this ONE awesome self-inflicted haircut.
2 games of Jenga, then a few towers built
2 quesadillas eaten, with sour cream

Saturday, August 24, 2013

BMT Day -4 & -3 Shofar Sho Good

Our Friday day began with a bath. Shocking, I know! After a change in bedding and clothing we were set for the day. Sam announced that he was ready for some laps and off we went. Upon our return we played some more Monopoly on the iPad where Sam proceeded to trounce two computer players and myself (He swore that when I went out to talk to the doctors and nurses for rounds that he only made trades with me that were mutually beneficial...yeah right). I might have fair-traded him my railroad for a onetime cash payment knowing how much he loves the railroads. I also taught him some strategy on how to get the computer players to overpay for a property during auctions. Other than that he won the game fair and square and was in a great mood afterward.

In the middle of the game we got a visit and the title for this blog post when Rabbi Steve showed up bearing a seasonal Shofar (a traditional ram's horn blown during the High Holy Days coming up in a little over a week for those of you watching your calendars closely) for Sam. The lung work is great for Sam, and he's had a "blast" blowing his new Shofar (I swear my kids get new ones every year from Rabbi Steve and my wife must hide them all. There must be a secret closet in our house with at least 20 Shofarot piled to the ceiling).

While Sam kept asking if we could continue our heated game of Monopoly Rabbi Steve peppered Sam with questions about our trip to Disney that he and his secret elves made possible. Sam gave him the highlights, but it was like pulling teeth at moments to get him to admit how much fun he had and what rides were his favorite. Then Sam countered with a request for a trip like that to Disney every year (his Monopoly negotiation skills are clearly improving). Rabbi Steve negotiated Sam down to one more trip for when he is healed down the road. Sam agreed. I said Rabbi Steve had to come with us this time.

Sam and Rabbi Steve loved continuing their battle of hospital volleyball after seeing who could blow up the largest surgical glove.

Finally Rabbi Steve had to leave, but not without one final Shofar Sho Good Blast for a healthy and blessed Shabbat Shalom.

I left for a few hours during the day and came back to Sam's artistic talents executed upon his own head. Not only had Sam given himself his own haircut with parental consent, but he'd used his own body as an ink pad and then pressed paper to his limbs to create his art. 

If he loves it then I guess I can live with it. I gave my brother a hair cut once...just once.

Shabbat was blessed surrounded by family and friends. Together we said the blessing over our up-to-code electric Shabbat candles and blessed the Challah brought directly form Chicago (where Sam believes all good food comes from. "I love Chicago Food!! he yells on occasion). With that the younger siblings departed as David stayed until visiting hours were over. Together we watched Pirates of the Caribbean since that was one of the water rides Sam couldn't experience during our trip to Disney. 

Shabbat was relaxing. We hung out, talked, and just let the day wash over us. The baths continue, we play with the anti-nausea meds to try and make sure Sam is comfortable and vomit-free. I even had a few minutes to talk with a friend on the floor and meet another parent I hadn't met before. We spent a few minutes making each other laugh, and forgetting that when we close the doors to our children's rooms we feel like we are on different continents, not just 100 feet down the hall from each other. It was a glorious moment stolen in the halls of the HOT unit. 

This is surely (don't call me Shirley) its own little world. Each family fights its own battle often isolated from each other and the outside world. Together we remember our similarities those few moments we steal in conversation. Closed away in our rooms we create our own world of art, music, beauty, conversation and a broad selection of films that never seems broad enough. It is like our own Salon of healing as people must come to us to engage us in conversation since we can't go to them. And Sam does his best to love the minutes he can when he feels well or when his meds make him feel as if he is once again on top of the world. It is the giddy Sam that reminds us of all the sunshine that fills his incredible soul. The grumpy Sam comes when the counts are low or his sleep is disturbed once more to check vitals at the darkest hours of the night. That Sam curses the intrusions, curses the indecency, curses the necessity to check his life signs over and over when all he wants to do is sleep and dream far away from his now. These moments are few. Some nights are better than others. These are the moments when we all hold our breath until the sun breaks and Sam rises like a ray of sunshine at 8:30 am or 9:00 am (none of my other children have the decency to sleep past 7:00 am unless it is a school day!!!). Each morning Sam is my ray of sunshine as he smiles at me, wakes me with a request for his urinal and awaits the adventures to come. 

Shabbat Shalom & Shavuah Tov! May you have a good week, may your week be fine, may it be as sweet as the Sabbath wine. 

Thursday, August 22, 2013

BMT Day -5

So Sam likes monsters. He likes big monsters, small monsters, flying monsters and creepy crawling monsters, so what would be a stay on the HOT unit be without a MONSTER med pole. Of course I'm not sure he was thinking Monster Trucks when they upgraded his med pole, but he is now the proud owner of one of the most well equipped Monster Med Poles ever.

While it was a raging storm of darkness and torrential rains outside, Sam and David played as if the rest of the world didn't exist. They played monopoly on the iPad (Sam is a horrific loser. He is still picking up on the fundamentals of the game and doesn't always listen when I tell him to manage his money closely). He did manage to beat me the first game out this morning and enjoyed that thoroughly. No I didn't take it easy on him. I take it easy on no child of mine. Beat me on your own merits or prepare to suffer defeat. He played well and the dice favored him this morning and me this afternoon. 

Throughout the day Sam and David also played Infinity Blade 2 and Plants vs. Zombies 2 together (OMG such an amazing game). David read stories to Sam and told some of his own stories too. They played cards and talked without a care in the world. It was a joy to behold and priceless when at nearly 7 pm Sam quipped after his third bath, "It feels as if this day was the shortest ever." 

Sam enjoyed receiving some lovely packages from more of our amazing friends. Books, and art supplies and an amazing Star Wars Origami book left Sam and David grinning from ear to ear. 

Just before dinner time came the whole family came to see Sam and reclaim David. Sam loved seeing everyone and was saddened when he bid them adieu. 

Sam rolls in his days as if this is all just a walk in the park. He's back on three baths a day, his nausea is stronger due to his six radiation treatments the first three days of this week. He's on plenty of anti-nausea and it almost does the trick. And yet his good moments are great and his bad moments are only blips on his radar screen. With David here I just sat back and watched them together while getting a little computer work done. 

David and the family are really the best medicine we can provide for Sam. The fact that at any given time the rest of the family are only just across the street at the Ronald McDonald House means that Sam's people are never more than a few minutes away. Being inundated with the hustle and bustle of all the siblings and having his favorite David in the world so close keeps a sense of normalcy at hands reach for Sam. No longer are we just a moment of FaceTime away, but rather we can be wholly together on a daily basis so that Sam is reminded of the greatness of those moments and of the noise and drama that can occur as well. Last year Sam would build up this utopia that was home and family in his mind. Some of his homecomings would be a bit of a let down because his siblings weren't perfect  and often threw their normal tantrum at bedtime. He had been away so long he had forgotten what bedtime was like. It was overwhelming for all of us. 

Now with us all just across the street he sees the love and drama on an almost daily basis so far. This allows him to appreciate the quiet when everyone leaves while allowing him to see that we are all right here with him for this experience, wherever it may lead us. 

After the last two weeks I don't need any excitement for a long time. I would appreciate it if every other nose in the family would stay intact. I expect people to rise and sit carefully and with grace for a long time coming. I suppose having a family is never a dull moment no matter what, and these last two weeks have certainly proven that. 

My infinite gratitude continues to go out to all the generosity and blessings that have been sent our way. You make all of this possible. We couldn't do it without you. Thank you to all those who are able to give time and body, allowing Phyllis and I to keep certain appointments and meetings that must be kept. Thank you of course to all the family and friends who are able to visit and to all the letters and emails sent filled with love and prayers to remind us of how many hearts we are held in. You give us strength in the moments when we need it the most. 

Wednesday, August 21, 2013

BMT FAQ: Day -6

Last day of radiation! Sam was, as usual, a trouper. The radiation oncologist (who looks like James Bond, by the way, a fact that has not gone unnoticed by Sam) told me that by the third day most patients are tired and crabby. Guess what? His experience played out for Sam too. I'm sure it has something to do with the ridiculously early hour for each morning's treatment. But that's just my opinion. Either way, he bopped along to his playlist and handled it quite well. They really loved him down there. It must be strange to work with a kid for only three days and to not know the outcome of the treatment....

There was a bit of nausea today, a bit of eating, a lot of resting, and overall just a quiet day in the hospital. Sam is looking forward to sleeping in tomorrow morning! 
Now, for a few of your burning questions about BMT -- I will try to answer as many as I can tonight and perhaps add some more tomorrow. Of course, I'm not a doctor, and I don't even play one on TV, but I have learned a lot from Dr. M, who insists on teaching his patient families as much as possible, and I've learned a lot from reading and watching and asking questions. (What? Me? Ask questions?)
How does it work? As in, is all of Sam's bone marrow going to be gone and the new marrow replaces it or does the new marrow just take over and reproduce, eliminating the old, bad bone marrow?
The purpose of a bone marrow transplant is to basically strip the body of its own marrow and start over, from scratch, with someone else's marrow. It's like a re-boot using new system software. The regimen that Sam is undergoing right now is called "conditioning" -- it is designed to strip the marrow (and hopefully all the remaining leukemia cells as well) in preparation for the new marrow. Unlike previous chemotherapies, which stripped his marrow but enabled it to grow back, this is a permanent deal. If he didn't get the transplant as scheduled, his own marrow would never re-grow. There are two ways to condition -- one is through high-dose chemotherapy alone. The other is through a combination of total body radiation and high-dose chemo. Our doctors believe that the radiation has a better chance of knocking out the remaining ninja leukemia, so that is the route they have chosen. There are significant long term side effects to radiation (and to the chemo route as well) but we are hopeful that those long term side effects will be far more manageable than any recurrent leukemia. So it's a risk we've agreed to take.

I received this in the mail today....and I'm hopeful that we will need it.

How does it work? Do they put the cells straight into the bones?
Supposedly, it's very boring and anticlimactic. The marrow will actually look like a regular bag of blood and go into Sam through his central line just like any other transfusion. He will receive benadryl beforehand to make sure he doesn't have any reactions (more likely to the processing chemicals than the marrow itself) and so it's possible he will sleep through it. It will take 10-20 days for the new marrow to engraft, during which time Sam will be most at risk for infections and other side effects. We're expecting a bumpy ride for the first 30 days at least. He'll be on a whole boatload of meds (you will see pictures of his enormous IV pole) to keep his body happy and to prevent infection. The plan is to actually insert a second line, a PICC line, to give them even more ways to send meds into Sam's body.

If you want to share information about Bone Marrow Transplant with kids, there's a great video on the BeTheMatch YouTube account. It's in two parts: Part 1 and Part 2. It's actually about a kid named Sam!
Why aren't you using your matched sibling? Who is the donor? Is it a perfect match?
Right now, a 26-year-old male somewhere in the United States (let's call him SuperMensch) is preparing for a surgical procedure, probably on Monday. I hope that someone, somewhere, knows what he is doing and is giving him a standing ovation. I hope that his friends are cheering. I hope his boss is giving him paid time off. I hope that his parents and grandparents are kvelling. I hope he is telling his story and encouraging other people to get swabbed. I hope the local news is making him a celebrity and I hope they give him the keys to his city and invite him to be the Grand Marshal of their town's biggest parade. Maybe he is even reading this blog (okay, that's doubtful). I hope that he knows that he is going to save my child's life.
Yes, we had a matched sibling. By taking Sam to transplant with a significant leukemia load, we are actually hoping for graft-vs-host disease -- we want the graft (the new marrow) and the host (Sam) to have a little fight. We hope that the secondary front of this war will be graft-vs-leukemia -- we want the graft (new marrow) to fight the leukemia (ninja) hard. The slight mismatch (antigen A) between Sam and SuperMensch will encourage this even further. It may make for a much rockier transplant, but our doctors are prepared with some incredible tools including a whole army of trained T-Cells that are ready to be called up. (This part is a little too blurry for me to explain to you, but you med-types may want to know that he's having a T-Cell Depleted transplant.)

Does a BMT recipient take on the DNA/genetic material of the donor? retain his own? or is there a mix?

I understand that Sam's blood will have the DNA of the donor but the rest of his body will not. I believe that his blood type will change to the donor blood type. It's a Law and Order episode waiting to happen. At some point I will have to explain about chimerism, a test that they do to see how much of the marrow is "donor" and how much is "Sam." (Oh wait, I just did!)

Throughout the treatment process have the doctors given any information on what Sam should be eating, or is any eating considered good? (I'm asking because you hear so much about "anti-cancer" foods and wondering whether the doctors buy into that, or if it's just pop nonsense)

The doctors are very concerned about Sam's nutrition but at this point and throughout most of Sam's process, they've been less concerned about what he is eating and more concerned about how much. I do believe that there is a lot of great stuff out there about foods that can support and help with treatment, but it can be a little tricky to convince a 7 year old that he should really be eating spinach and pomegranate juice when he'd prefer macaroni and cheese. We have felt very lucky that when Sam has been off treatment or has had good counts, his eating has returned to his normal, balanced and healthy diet. It's probable that Sam will be on TPN, Total Patient Nutrition, for much of the BMT process. It takes a lot of pressure off of us to cajole him to eat when he just doesn't feel like it, and it makes sure that he gets enough calories and nutrients to sustain him.

What's going on with the rest of you? And how's your nose?

The rest of us are doing okay. We are still living at the Ronald McDonald House and have temporarily enrolled the kids in school in Milwaukee. We are feeling so blessed to have found a place that will be warm and nurturing and hopefully perfect for our family. There's even a place for Solly on the same campus! Hopefully no one will bring home any germs (!) and everyone will do alright in their temporary-but-still-very-real school.

My nose is healing nicely and the bruises on my face make me look like a tough guy...which of course we all know I really am!

Can Sam have visitors? What about packages? How come you aren't wearing masks? How come Sam isn't masked?

At this point, Sam can still have SOME visitors -- we are trying to limit it to a few people including, of course, family. Healthy healthy healthy is the mantra of BMT. We don't want any viruses intentionally walking their way into Sam's room. It's inevitable that something could be anywhere so we are trying to be hypervigilant. At this point, his counts are still pretty good and masks aren't needed. I know there will be more precautions taken as we get deeper into the dangerous times. Sam can receive mail and packages, but remember that things need to be cleanable and bleach-wipe-able...or washable or whatever. Nothing too dusty or dirt-inducing...

And what else can we do to help?

There is a fund sent up at Am Shalom to help with our expenses. We are so grateful for this, because it is truly enabling us to spend all the time we can with our kids, and in particular with Sam. So thank you. You can contact Am Shalom directly -- 847-835-4800 or -- to find out more.

We have so appreciated the way that you stepped up to help us help the Ronald McDonald House (and last year the clinic!) that we thought we'd offer another opportunity. I spoke to the Nurse Manager and she expressed two small needs (I told her to think bigger so she's working on it). They can no longer provide foam mattress pads to families but they also only have space to store a few of them. And of course, many people do bring their own. But it would be so nice to have half a dozen on hand. Also, there are no hangers anywhere left on the unit! As fall rolls in and coats come out, it is so helpful to have hangers. So in addition to rounding out their movie list (a favorite pastime of ours, you've noticed), I made up a wish list that included these small needs. The stuff from this list will be shipped directly to Sam at the hospital...thank you.

Any other questions?

Tuesday, August 20, 2013

Less Eventful: Day -7

After yesterday's events, today was downright boring.


Radiation twice, a visit from the sibs & friends, some time spent with Dad and a bit of walking. The nausea held Sam down most of the day (a side effect of the radiation) and we tinkered a little with his anti-nausea meds to help keep it under control. Tomorrow is the last day of radiation, so that will be a notch in his belt, so to speak.

I'm going to try to put together a list of questions/answers about BMT (bone marrow transplant) so if you have questions now is the time to ask them....and I will use my acquired MD to answer.

And if you're wondering about me...I have developed a really lovely shiner and my nose is swollen and sore. But I'm FINE. Thank you for all the love....(and you'll notice that there are no pics of me!)

One day at a step at a time...we move forward day by day.

Monday, August 19, 2013

Eventful: day -8

I have gone back and forth with myself about sharing what happened today but I decided that it was a good thing to do. I have met so many "cancer parents" who share the same fear that I have -- a fear that in some way I, the caregiver, the parent, the person-who-takes-care-of-a-sick-kid, would be in some way incapacitated. It's a very real fear.

This morning, it's not clear why, I blacked out for a few moments and hit the floor.

I'm fine.

But I awoke a few moments later and found myself in a pool of blood, pouring from my nose.
Which hurt. A lot.

Sam was asleep and I didn't know what to do. I shook myself and rang for the nurse (after first contemplating how I would clean it all up myself) and she, along with an entire team, helped to take care of ME. Sam was due in radiation for his first treatment. He slept through most of the bloody mess but woke up in time to hear the conversation in which we discussed how the nurse could take him to radiation so the crisis team could take me to the ER. Yes, me. To the Children's Hospital ER. Oy vey. 

To make a long story short, they determined that I was dehydrated and had low blood pressure, there were no external causes. After a full bolus of fluids (by IV no less) and a can of sprite, I was released back to Sam's room. In between I called up to the HOT Unit to check on Sam. Of course, he was FINE. The nurses and doctors in the ER were fantastic, some of them had already treated Sam so I knew them. (Oh, and they aren't sure if my nose is broken or not. But I left with ice...ow!)

All day, the staff on the HOT unit have been checking on ME. It's very sweet and kind and good. It was a huge fear of mine that something would happen to me (or Michael or any caregiver) while we were in the hospital. And you know what? We handled it. We managed it. I don't think Sam realized exactly what was going on and he totally handled going down to radiation without me.

I'm tired and bruised but I think I'll be fine. (Don't look too closely at my nose...)

And Sam was able to show me how radiation works -- because he was the expert when we got down there for his second treatment of the day. So there's that silver lining.

Here's what he looked like during radiation, rocking out to Adele singing Skyfall...

The beauty of staying across the street is that there can be short visits, long visits, partial visits...The kids came over for a short stay but David stayed through dinner while the other kids went back with Dad to eat. So good.

Radiation has left Sam a with nausea and some jaw pain but so far he's handling it very well. He has to sit very still for about six minutes at a time for the radiation and they are very impressed with his ability to "play statue." They don't know what a great yogi my kid is!

A little music therapy and a walk to catch up with a regular hospital buddy rounded out our day....twelve laps after zofran, hydroxizine, dexamethazone, morphine and a blood transfusion....

Hopefully tomorrow will be less eventful.

Sunday, August 18, 2013

Back in Business, Day -9

Some upsides to being back in the hospital:

1. The nurses are now responsible for Sam's medicines and lines and such. Big relief to not be the primary providers of medical care.

2. Yeah, that's all I've got.

No, seriously, we are grateful to be moving forward. Even though this new step is scary and unknown, and brings with it some frightening possibilities, it's time to move forward. Sam was not in any sustainable place, and this is the only possible option. And so we are here.

Sam has officially moved into room E585*, an east-facing room with a big bathroom (the jackpot!). It's all decked out in frogs and turtles and Sam's favorite stuff.
Carrying in some of his stuff (like the hat?)
This kid is serious about decorating...

The mostly-finished product -- decor to be improved upon as time goes on, of course!
It was the first time that Sam was admitted while the whole family is in Milwaukee, so everyone came over to bring some of the stuff and check out his new digs. Then they trooped back over to Old McDonald's House for their own playtime and bedtime....while Sam and I (mom) settled into hospital routines. A snack...

 Some Uno....
And finally a whole poleful of medicines. Wow, there's a lot of details involved in this BMT (bone marrow transplant) process. Sam's on a heparin drip, a couple of prophylactic antibiotics and antivirals, and a bunch of fluids. Plus antifungals and some other stuff I'm sure I'm missing. Remember how I said I was happy to turn it all over to the nurses? Yep....especially when he spiked a small fever this evening. None of these meds are particularly reactive, so they drew cultures and hopefully there's nothing that should be cause for concern.
THIS is only the beginning....
Tomorrow is Day -8. From now on, our days are numbered, first in countdown, and then in countup. The countdown days are the "minus" days and the countup days are, you guessed it, prefaced with a "plus." It's just how it is done over here in TransplantWorld. Tomorrow is the first of three days of twice daily Total Body Irradiation (TBI), which is new, scary, and comes with a whole host of long-term side effects. We are most hopeful that the most lasting long-term side effect of TBI will be ridding Sam of the leukemia forever. Can't wait to be on the plus side....

And so I type this from my perch on the couch in Sam's room...the whoosh of the IV pumps has already lulled my boy to sleep and I am so grateful to put him into the skilled hands of our team. I pray for their knowledge and skill, their training and their experience, their strength and fortitude that will guide us down this path. Where they lead us, we will follow.

My phone lit up with messages today from so many of you...sending good wishes and love to us as you knew that today was the day. Both Michael and I continue to be simply overwhelmed by the love and support -- it carries us along, it buoys us up. Thank you.

Today is the 18th day of the month. It's silly to read too much into these things, right? But I can't help but hope that beginning today, the CHAI day of's good, right? I'll take what I can get....

*Sam's address at the hospital is:
Sam Sommer, E585
Children's Hospital of Wisconsin
P.O. Box 1997
Milwaukee, Wisconsin 53201-1997
*Don't feel that you have to send him anything!