Thursday, October 31, 2013

Here - BMT +65

We are here now.
In this place between normal and not-normal.
It's a little strange, really.
Things are far from "normal" for Sam.
But they are mostly "normal" for everyone else.
Which is even stranger for Sam…to know that stuff is swirling all around him.
Sometimes he is too tired to notice -- he is just content to rest on the couch.
But sometimes he notices -- and he is sad, mad, angry, jealous, frustrated.
The switch from central line to PICC is supremely frustrating to him. He hates having the line in his arm.
The constant IV-fluid backpack is irritating to him.
Don't tell anyone, but I let him go trick-or-treating without it. (But it was nearly-pouring rain so there aren't any pictures.)
I think we're all weary.
A year ago Saturday was the day that Sam came home from the hospital for what we believed was the last time. A year ago Saturday we celebrated the end of Sam's treatment.
And here we are, a year later.
He is good. He is really good.
It's just not the same euphoric feeling we had last year, as we started the month of November.
I think we're always waiting for the other shoe to drop.
We are here now.
In this place between normal and not-normal.

Saturday, October 26, 2013

Well - BMT +60

In honor of day +60, we carved pumpkins.

Okay, in all fairness, Sam has been bugging at me for weeks to carve a pumpkin.

His platelets are pretty good.
So I felt safe putting a (small and relatively dull) knife in his hand.

It's never far from our minds, as evidenced by his t-shirt.
But we live each day....
He feels pretty well.

Today he told me that his leg hurt. "But not like cancer, mom. Just like I pulled a muscle."

I'm not sure what to think about the fact that my son knows how cancer feels....

And yet, still, I focus: today was a very good day.

Thursday, October 24, 2013

History - BMT +58

Today was relatively historic. 

And completely anti-climactic. 

All at the same time!

So today Sam got his specially trained cells, prepared to fight against three major viruses - adenovirus, CMV, and EBV. All three can be devastating and deadly for kids with compromised immune systems. All three could be "reactivated" if they're already in his system. This is a new clinical trial to see if this kind of thing can make bone marrow transplant safer in general. If this is an option for all transplantees, then it is another line of defense that the doctors can use. He's the first kid in Wisconsin to get these cells!

We might never notice its efficacy, of course. We are NOT going to deliberately expose him to any of these viruses just to see if it works (but they laughed nervously when I asked about it)! But hopefully it will be good for Sam and good for the future. 

It was quite a process -- the cells had to be defrosted and checked and double checked and triple checked. 

Guess how much cell volume there was? Why yes, there WERE 18 mL of cells. Exactly. 

You can't make this stuff up. 
Dr M and I each explained the significance of 18 to different staff people during the infusion, which took only a few minutes. 

Sam didn't have any reaction but we had to stay all day to monitor his vitals. The infusion could lead to a little graft vs host disease, since it was donor cells, far so good. 

And then it was over. We have to go back in the morning to have his blood checked again, and then hopefully....smooth sailing into next week.

There's something special about being a part of something know that work is being done to make this all safer and better for all BMT patients....I'm proud of our doctors, I'm proud of SuperMensch, and I'm hopeful, oh so hopeful, for a future with better treatments for cancer patients. It's just one small drop in the sea of medicine, but it might be our little chance to help. And for that I am grateful. 

Tuesday, October 22, 2013

Adjusting - BMT +56

Being at home is certainly an adjustment for all of us.

Sam is still pretty tired and taking care of his IV and oral medications makes me feel a little bit like I have a newborn baby again! But as I said over and over to the hospital folk -- I'd much rather do these things at home than be stuck in the hospital! So I've brushed up on my nursing skills. The only casualty of our move home from RonMac (as in, the only thing we misplaced) was our thermometer, and while I'd really just rather not take his temperature at all, I did order a new one....I might take his temperature each night before I go to bed....

There's been a lot of family togetherness time:

David is reading the first Percy Jackson book to Sam
Today was the first "normal" home day; it wasn't a weekend, and it wasn't a clinic day. It's going to take a little getting-used-to -- homeschooling, finding activities that are okay for his immune-compromised system, and just hanging out at home without the siblings...

Sam hung out with Speedy for a bit (and lucky me, I cleaned his habitat)

We baked bread, and Sam made a huge mess.

Luckily, no one minded.
I decided that the honor and privilege of being able to make a mess in your own home was worth the cleanup.

And the bread was yummy too!

It's all an adjustment, and we're working on it.

So what's next?
On Thursday, Sam is going to receive an infusion of specially-trained Fighting T-Cells (don't you think that sounds like a band or roller derby team?) in a really cool clinical trial in which he is taking part. He will be the first kid at Children's Hospital of Wisconsin to receive these specially trained cells, cells that were given in an extra blood draw from SuperMensch. Just one more reason to appreciate his gift! Our doctors have been working hard with these cells for weeks, training them....I envision a large bootcamp with a drill sergeant teaching them how to seek and destroy viruses....

It will take quite a while on Thursday, but it will hopefully not cause any problems for Sam, it will be similar to a blood transfusion. Of course, I will keep you posted.

I have said before that transitions are hard. We are all making adjustments and course corrections and trying to figure it all out together....

Wow, we sold a LOT of t-shirts. I know that together we raised over $4000 for the MACC Fund through the sale of t-shirts and hoodies. We will definitely do something like this again, but not for a little while. Thank you all for your generous support. I know that when you wear those t-shirts all over the country you will help raise awareness for childhood cancer, and awareness = funding = cure. For my Sam and for Sabrina and John's Sam and for all the kids....thank you.

Saturday, October 19, 2013

Back Home!!! - BMT +53

A few normal temps and we busted out Friday morning....


And hopefully we will just stay here. 
We are embracing the new normal....

Thursday, October 17, 2013

PICC-Me-Up - BMT +51

After yesterday's Feel-Better Day, I hoped that today would be Feel-Even-Better Day:

It didn't really start out that way. I'm sure you've noticed by now that anesthesia is not Sam's strong suit. I don't know if I've fully done justice to how miserable the whole experience is for him -- from the pre-procedure anxiety to the waking up in a terrible state, it usually isn't good. I had high hopes for today's procedure, though, since he doesn't need to be put fully to sleep. But it seems that the more times we give him these sedation drugs (today he had ketamine and versed), the less happy he seems with them. Dr. M has actually given Sam's case over to an anesthesiologist to do a little detective work and see how we can make these sedations easier for him -- since we aren't exactly done with the whole thing. They want to check his marrow pretty regularly but it's hard to do if the sedation is such a stressful thing.

Anyway, we waited about an hour and a half after the original time for the PICC line placement, which is done in a department called Interventional Radiology. The folks down there remembered Sam from his first PICC, when he was a rockstar. Today he had a much harder time with it. (I don't get to stay in the room.)

But finally it was done, and he slept off the afternoon. When he finally woke up, he watched Gene Wilder (a local Milwaukee kid!) in Willy Wonka and the Chocolate Factory (which we found out is Dr. M's favorite movie, who knew?) and compared it to yesterday's viewing of Charlie and the Chocolate Factory (the newer one with Johnny Depp). Sam liked them both, which is very diplomatic of him.

He's still feeling a little sluggish but he asked for pencil and paper in order to start working on his birthday wish list. It actually has an interesting mix of attainable and totally ridiculous things. (For example, there will not be another turtle coming to live in my house.) To know that this birthday will, God willing, be followed by many more might forgive me if this simple activity caused a little bit of mama-tears.

So it wasn't exactly the "best" day, but it got much better after about 4:00pm. I think that home-going is on the horizon very very soon. (I don't want to jinx it so I'm not even going to say when I think it will be.) Thank goodness, because Sam is desperate for a Sunset/Michaels/LouMalnatis/CurryHut fix, not to mention his own house and his siblings and his dad.

Today we also got some belated good news. When they did Sam's biopsy a few weeks ago, the one that came out with zero leukemia, they also sent a test called a "chimerism." They want to know what percentage of his blood, marrow, and T-cells are Sam and what percentage are SuperMensch. The results have apparently been there for a while but since we were so caught up in the "remission" result, they were never communicated to us. I knew if there was a problem, we'd have heard by now. So let me tell you straight up: Sam's blood, marrow and T-cells are 100% SuperMensch! This is an excellent result, it doesn't get any better than that! So at the end of this relatively crummy week, it was lovely to hear some very positive, affirming news that Sam is truly doing well, that this hospital stay really might just be a speed bump along the way.

There's still a long road ahead of us. Sam continues to have a severely compromised immune system, and we will continue to make very regular visits (twice weekly at least) to the clinic in Milwaukee. But his body is responding well, his results are looking good, and we are all happy! I know that my own optimism will continue to be cautious for quite some time...but for today? I'm feeling relieved and blessed.

Wednesday, October 16, 2013

Feel-Better Day - BMT +50

Some days, it's all in the marketing.

Last night before bed, Sam said to me: "this was the worst day EVER."
And I responded with, "Great! Then we know for sure tomorrow will be better."
(See how I set that up?)

And then when he woke up this morning, I declared it "Feel-Better Day!"

We even had a logo:

It's all in the marketing. (I offered to go get balloons but that idea was shot down.)
I declared that Feel-Better Day would have walking and eating and playing.

And it almost had all of those things.

There was one lap in the morning (and another planned for later this evening).

There was a few games of Crazy Eights and some Uno Dice.

Things were going well with Feel-Better Day until we hit a little wall of tired, which turned into a nap, followed by a movie with Grandma (Enchanted, which Sam didn't love, but Grandma did).
Watching a movie with Grandma
Then I found an Optical Illusion book which was very well-received and caused a lot of excitement and interest....

Until it made him vomit. Yep, I did that. Oops. (It made me queasy too.)

So, the only thing that Feel-Better Day was missing was the eating. But Mom had a mini-Twix bar and a latte, and that was part of Mom's Feel-Better Day!

So overall, it was a smashing success. We got through the whole day with a much happier kid, who truly looks and feels a lot better. I think (I'm not making any promises) that if things continue this way, we will be going home soon!

Tomorrow comes the PICC line, which goes into his arm. They don't have to put him to sleep for it, so that makes it much better, and it's something that we've done before, so that also makes it much easier.

Some days, you just gotta sell it to yourself. Sometimes that even works!
Just you wait for tomorrow, Feel-Even-Better Day!
(Do you think he'll buy it?)
Looking forward to being together instead of on FaceTime
So we've raised over $2500 for the MACC Fund through the sale of these hoodies and t-shirts. Wow, I'm impressed! There's about 5 days left to buy before the campaign closes. Will we break $3000? It does keep me busy checking all day long...

Tuesday, October 15, 2013

Not Quite - BMT +49

Today did not give us quite the answers we were looking for.
So far, no real answers at all.

Sam's line was removed. (That darn line was put in on April Fools' Day....I think that was its problem.)
The endoscopy was performed. (Nothing immediately visible but biopsies were taken, which was the plan.)
They put in a peripheral IV (temporary IV in his hand).

He hated every single moment of it, except the parts that he slept through.
He woke up from the anesthesia furious and uncomfortable.
He hates the IV. He hates the way the scope made his throat feel.
And he had a flare-up of his skin GVH, so at the end of the day, a course of steroids was prescribed anyway, even without the endoscopy biopsy results.(was that enough medical jargon in one sentence for you?) His blood pressure went up a bit and his temperature hasn't spiked to a fever but it hasn't quite gone down to normal.

Usually I can come up with some way to frame a day, to put it all in perspective.
The only perspective I can come up with is the mantra I keep repeating: he is NOT the sickest kid around. Not even close.

It doesn't much help when he's miserable and unhappy....but I try.
Man, do we need a break. Hopefully everything will feel brighter in the morning, most particularly Sam.

I distracted myself today by counting t-shirt and sweatshirt sales. You guys are impressive and amazing. So far, this little campaign has raised almost $1500, and we still have about five days to go. So there's something. Feel free to tell your friends.

Monday, October 14, 2013

Wait - BMT +48

Mondays are a little bit heady around here. Suddenly the whole team is back in place, after a skeleton-crew weekend. Questions are asked, and ideas are floated. 

After a lot of questions and a few tears (those were mine, I just had a teeny meltdown), we decided to go ahead with tomorrow's procedure to have Sam's line removed. Along with that, they are going to do an upper-GI scope to check and see if there's any graft-vs-host disease in his esophagus and/or stomach. Remember how I said that symptoms of this are vague? We'd rather be safe than sorry, and since they're putting him under anesthesia works. Oh, how I hope this gives us some answers. I hate that we don't know. It's almost harder than some of the scary-really-sick days because it just seems so elusive and frustrating. Sigh....
A conversation and exam by Dr. M
I snuck in a pedicure today. Sam barely noticed I was gone and all the nurses admired my sparkly blue toes when I came back. I debated whether or not to tell you all about this part of my day but it was such a delightful highlight that I knew you'd all appreciate it. On my way back, I picked up two new movies for Sam. Sparkly blue and a latte for me, Chipwrecked for Sam....everyone got a pick-me-up today. 

Usually our days in the hospital are filled with walks and games and projects and the like. This lethargy of Sam's is hard - I have very little to do (except worry) in between checking Sam's temperature while he naps. So I've had a lot of time to work on small projects (nothing too brainy, since I'm not feeling very focused this week) and today I came up with this t-shirt design. Remember how I said I want to do something but I just didn't have the wherewithal at the moment? Well, here's a start. A little over $8 from each t-shirt will go to the MACC Fund, the primary supporters of the work being done right here at Children's Hospital of Wisconsin. And I think the shirts are quite cute and not too "cancer-y." I've never done anything like this before, so let's hope it works. The campaign is only active for seven days. If we don't hit the required number by then, it's over. (This is like those deal-of-the-day sites.) So feel free to share on your Facebook pages or with your friends. I'm sure they will make lovely Thanksgivukkah gifts. (Check back, I'm working on youth sizes and hoodies!)

The end of the day was a little perkier than the beginning, with a movie (Chipwrecked) and yet another set of blood cultures thanks to yet another fever....This raises a most important question: which is more grating to a mama -- SpongeBob or the Chipmunks? I think it's a toss-up!
Thanks, Rachael, for the cute googly-eye ring!
And that's our story. I may or may not have any answers by tomorrow night but at least we will have done something to see if we can get rid of these fevers....

Sunday, October 13, 2013

Amusement Park - BMT +47

Well, today didn't go exactly as planned.

By 11am, they still hadn't called Sam for surgery. Turns out a few other cases had come into the ER and they took precedence. I was starting to lose my mind a little bit, since this was now the second day in a row that we'd kept Sam without eating for most of the day. And then the doctors told me that after today's procedure, they still planned to proceed with tomorrow's (to place a PICC line)....a third morning without eating!!!!

Then I lost my mind a lot. It was the straw that broke the camel's metaphorical back. Have I mentioned how much I hate weekends in the hospital???

A few phone calls placed and a screeching halt was placed on the surgery plan. A whole new plan in place and a flurry of activity. Labs. Questions. Conversations. Consultations.

I learned today that a side effect of total body radiation can be a few of these sleep-all-day kind of days -- six weeks later (much like when you have a baby and then someone tells you about those growth-spurt-marathon-eat-sleep-eat days). It's possible that Sam's desire to stay in bed all day and sleep is related to that.

It's also possible that there's something going on with graft-vs-host disease in his esophagus and stomach. Fatigue and a general icky feeling are symptoms of that (how vague can you get?!) along with the low-grade fevers and nausea.

What seemed like such a simple diagnosis -- the bloodstream infection -- is not quite as simple. It's still not over-the-top-scary, but I think by now you all know that Sam is not a stay-in-bed-all-day kind of kid.

Finally they decided to give him a unit of blood and see if that perked him up. As I type this, the blood is finally going. His blood type has changed due to the transplant so there are always a few minor hiccups giving blood now. He has eaten a little, and he's more talkative. Hopefully things are on the upside....

I texted a friend "Hello, roller coaster?!"
She wrote back: "Not just a roller coaster. A whole darn amusement park."

Yep, that about sums it up.
So....hopefully tomorrow will be better. And there will be a plan put in place.
And eventually we'll figure it all out.

Until then....I'd prefer the FastPass, please.

Saturday, October 12, 2013

Speed Bump - BMT +46

Sigh. Today was one of those yucky hospital days.

To be clear, Sam is not super-terribly sick. I say this because I am fully aware that it can be so much worse.
That said, there is most definitely something not-quite-right about his health right now and we don't know exactly why.

Let me back up to yesterday (Friday), when he was scheduled to be discharged with a diagnosis of two different bacterium in his bloodstream. Things were going fine, he was going home on IV doses of vancomycin (to be administered by Dr. Mom and Dr. Dad) and we were packed. Then, just as his last in-patient dose was finishing, the nurse took a set of vitals and bam...another fever. (Which is a little frustrating because it was low enough that it wouldn't have bought us a trip to the ER if we were home, but since he's already inpatient, it counts as a fever.) After consulting with the doctor, I knew that this was going to be another 48 hours in the hospital, waiting for a new set of cultures and some fever-free days.

As you can imagine, this did not make Sam happy.
He declared that he wasn't going to do anything, wasn't going to eat anything, wasn't going to leave. his. bed. until he could go home. Thankfully that only lasted a few hours and then he was out and about, spraying nurses and doctors and even his mama with syringes full of water. He declared that he was going to stay up ALL NIGHT and I let him give it a try until 11:30 when he finally conked out. (Did you know that Full House is on at 11pm? Who knew!?)

He's still having intermittent fevers (there was another at 11pm) and so this morning the decision was made to take out his central line. It was a moment in which I was quite interested in the educational system of the doctors. The attending doctor made the resident run through and eliminate all the possible sources of infection, until it was decided that the most likely source was the line itself. It's hard to tell, sometimes, because running the antibiotics through the lines can mess up what could be a positive culture. Some of this is a guessing game, but taking out his line seems like the simplest option.

Of course, it is a surgical procedure. It's only simple to the person who orders it, in my opinion.

He slept almost all morning and I didn't wake him because I was waiting to find out if the surgery was actually going to happen. At about 2pm, I learned that they just couldn't fit him into the schedule.

The view OUTSIDE our room, and this is kinda what it felt like inside too. Gray and dreary.
So now it's scheduled for tomorrow morning, supposedly we are first on the docket. It's a quick procedure, and they will place a peripheral IV to give his body a little rest from invasive lines....and then I think that a PICC line will eventually be placed in his arm to continue to give his IV fluids and medicines over the long run. Hopefully this will all happen sooner rather than later and we can go home by mid-week.

He was totally miserable all day today, continuing to be feverish and feel yucky and not eat and just....sleep. It's a little scary to me when he doesn't even want to watch SpongeBob. It makes me sad and scared and worried.

Like I said, he is for sure not the sickest kid around. But he's definitely not himself and I'm really really really hoping that tomorrow's line removal will fix this problem.

One of our favorite nurses said to me today, "This is a speed bump. And you know what's good about speed bumps? There's usually only one of them and then you can speed up and drive off."

Oh, I hope so.

P.S. If you want an update on our friend Sammy Jeffers, it's here.

Thursday, October 10, 2013

Rant - BMT +44

Important note: I know that many of you read our blog posts out loud to your kids. Today's post might not be the one to read out loud without a little censoring. The Sam update is at the end....he's doing fine today.

I am tired and angry and sad.
And none of those words even begin to convey the hugeness of the reality of how this all makes me feel.

Since Sam's diagnosis last year, I have met and "met" (virtually) hundreds of kids and families in the same situation as ours. Leaving out the kids and families with non-cancer life-threatening diagnoses for the moment, I feel that my world is now full of an uncountable number of families touched in horrible ways by cancer.

September was Childhood Cancer Awareness Month. There were stories, all month, about kids with cancer. (That link takes you to one blog, but there were others that shared stories all month.) But I could share a different child's story every day forever and never tell them all. A friend recently asked me how I felt about reading and sharing all those stories. I have thought a lot about this. In some ways, it is like poking at a wound, to see how it hurts. Yes, I'm living our own story. Yes, I'm telling our story....but it's not the same. I know far too much about cancer diagnoses now. I know which ones are breathtakingly terrifying and which ones are horrifyingly ghastly, and which ones are merely gut-wrenchingly frightening (there aren't any that are sweet or good or even just okay. Even the "good" cancers leave parents gasping with terror). I know the pitfalls and the dangers, I know the wheres and the whys and the hows. I find myself awake in the night imagining and remembering and feeling the pain of the moment of diagnosis, the numbness that filled my limbs with the announcement of relapse, and the way I can only imagine it must feel to hear that there's no hope left. Story after story. Photo after photo of kids in hospital beds, with poles and tubes and oxygen and central line dressings and ID with hair and kids with bald swollen with steroids and fluids, kids skeletal and bruised-looking. Smiles and tears....searching each photo for the face within, the imagining of what this child is really like, how it really is in that hospital room, how they pass the hours and how they spend their time and how they tell their stories.

Maya Thompson, Ronan's mom, wrote a heart-wrenching post last year, entitled "Breaking News: Childhood Cancer is NOT Rainbows and Buckets of Sunshine!" I quote her:
Childhood cancer is NOT happy kids with sweet shiny bald heads and brave smiles. Childhood cancer is NOT something that is given to kids because they are strong enough to handle it. Childhood cancer is NOT sunshine and love. Childhood cancer is scary. Childhood cancer is dark. Childhood cancers ruin families and lives. It is probably one of the most stressful, heart wrenching things in the world.

Sometimes I wonder if we have contributed to the cheery image of childhood cancer. Do we share enough about the heartache, the terror, the worry that we feel each moment of each day? Our story is so full of love and blessings, but oh, how there is pain and sadness, worry, fear, yes, even despair. I have found myself in bare hospital conference rooms where I signed reams of paper filled with information about the ways that these "treatments" will hurt my child and in my own coping way, I cracked jokes with the oncologists through my tears. I signed those documents...I am the one who signed the consent to pour chemicals, terrible, horrible toxic chemicals, into my child's body. I am the one who signed consent to send radiation into his body, radiation so strong and scary that the door between us was six inches thick, radiation that could rob him of his ability to grow, to think, to see. I am the one who handed him over to them over and over again....and at the end of each day, I found myself ridiculously grateful that there were documents to sign.

Because throughout all of this, I have met families for whom there is no hope. Families for whom there are no documents -- no chemo protocols, no standard course of care, no odds at all, not even slim odds. The documents that they are signing are hospice arrangements. The documents that they are signing have no long-term statistics. There is no long-term. One such family is an old friend of Michael's. I don't know Sabrina and her family personally, but we have become friends on Facebook. I know that he knows her well, from his NFTY days. What are the odds that our two families would each have a child named Sam, and that child in each family would have CANCER? And what are the odds that her Sam, their beautiful little boy, would have an inoperable brain tumor....and that the end is very near for him. And even as I sit here in my Sam's hospital room and write these words, they are holding their sweet boy so close....and truthfully, the absolutely bare-to-the-soul truth is that I am beyond sad....I have moved beyond sadness into blinding anger. Anger so consuming that I want to smash windows and throw things. Anger so consuming that I couldn't sleep last night as I imagined smashing my fist down on a desk in the National Institutes of Health and DEMANDING in strident shouting tones that something MUST BE DONE about DYING CHILDREN. I am so consumed with anger that I can hardly breathe as I think of Sam Jeffers and his family.....and my heart simply breaks.

...and then I think of so many others, and all of us in this horrible horrible horrible club. Sam and Sam and Sam (yes, so many Sams) and Cara and Ari and Jonah and Clio and Emma and Cookie and Renae and Sean and Isaac and Leah and Collin and Mia and Zachary and Londyn and Emily and Jackson and Caleb and Nolan and Eric and Katherine and Chloe and Gabriella and Zach and Issy and Aidan and Hannah and Maddie .......the kids who we see in clinic and whose updates I read with my heart in my throat. (And the ones who are no longer with us? Bo and Ian and Jack and Kayleen and Donna and Talia and Tucker and Addison and Mya and Zach and Sophia...and so many more...) And these are just the children that I know. These are just the ones I could name off the top of my head and that isn't even the tip of the iceberg. And I am blinded by my anger about the lists of kids who are terribly affected by this. Kids who will live with the consequences of their parents' signatures for the rest of their lives...signatures that we signed while blinded by the tears of knowing what we were signing....

Today is not the day, but I am going to do something. I have to do something. This cannot be. This cannot stand. We cannot stand idly by while our children are bleeding and dying....I am breathtakingly angry and terrified of the future. Rainbows and shiny buckets of sunshine (and art therapy and walks and treats and fun hats) might be what we give to Sam and to our kids, we sell them the good parts of this so that we don't damage them even more than they already are. But Michael and I? Sabrina and John? And all the other parents and caregivers? We are indelibly marked and scarred and we will never recover. Nothing will ever be the same.
My current Facebook cover photo....
(Stepping down off the soapbox and back into the hospital room....)
They've identified Sam's two bacterium. Two! Yesterday there was only one but another one popped up on further culturing and now we're stuck with a course of vancomycin. It could be worse, of course, but vanc is not a picnic-type-drug. But if all goes well (basically, no more fevers), he'll go home soon....oh, I hope so. He perked up today for the art therapist (hooray) and pointed out to her that it's even more fun to do art because she does the cleanup! (Totally my kid, right?)

A walk in the Healing Garden did both of our souls a little good. There are fewer bugs to check out in the fall but we did see one really good creepy crawly thing as we walked back inside. (See, I'm learning how to be a good mom to a bug-loving child. Sheesh, I hate bugs.)

He so desperately did NOT want me to take his picture.
So here's to a night with no fevers, a night of restful sleep and quiet breathing, a night of hope and prayer and blessing....and hopefully back home before long.

Wednesday, October 9, 2013

Crabby - BMT +43

It's all just about waiting. 

Waiting for the cultures to differentiate which bug is percolating inside of Sammy. 

Wait for his fever to go down. (It is still hovering right at the "fever" mark -- not so high but high enough)

Waiting to go home. 

Sam is totally over the hospital. He had his taste of freedom and he is
in being in the hospital. 

It's been a fun day. 
Do I detect a hint of sarcasm, Phyl? 

In all fairness, he's feeling a little under the weather, so there's that. 

But not THAT sick. So....

The hospital teacher piqued his interest with some "extreme dot to dot" puzzles and there has been some drawing and iPad games and lots of television. I think he would spend the whole day in bed if I would let him....

Medically speaking, he is receiving two broad-spectrum antibiotics to combat the bacteria that they know is in him. Pretty soon, we hope to have the specifics on what kind of bacteria so the meds can be more artfully tailored to its specifications. His blood cultures since the first one have all been negative, which is a relief -- it means that his central line is clear of infection and doesn't need replacement (which would be a surgery). Once the cultures are negative for forty-eight hours and the meds are in place, we can talk about going home, but probably with IV antibiotics. Small price to pay, right?

It's a minor hiccup. It could be so much worse. It is a good reminder, I think, that we still need to be so incredibly careful with him. This bacteria is a common one that is probably present in all of our bodies -- but Sam's weakened immune system let it get a little out of hand (opportunistic little bugger, as one friend said). So we continue to wash hands, limit exposure, and really just hold our breath that he doesn't get anything scarier...

But I would have done just fine without the reminder, thankyouverymuch. 

Tuesday, October 8, 2013

Aw, Man! - BMT +42

So, on Saturday we said farewell to Ronald McDonald and his house:
And we headed home to Highwood. 

The transition was actually less rocky than some of our other ones, probably because we were all in it together. Saturday night I made spaghetti and (ok, faux) meatballs and we sat down at our own table to eat -- I think it was the finest meal I've eaten in months! 

And then everyone started to learn to adjust to life at home. Yael and David and Solly all started at their respective schools. I spent Monday morning in a hand-cramping whirl of paperwork and voila - back to school....

(I did, in fact, insist on a junior high first-day pic too but I will spare him the publicity...)

Sam did a bunch of eating and even went out to his favorite restaurant (Michael's, of course!) but last night (Monday), around 7pm, he was sitting snuggled up with Dad...and Michael realized that he was burning up. Sure enough, 101.7F bought us a ticket straight back to the Big House in Milwaukee. A long night spent in the ER and here we are, back in E583, our old haunt. (I didn't even have time to take any "at home" pictures!)

The sunrise view

So now we wait. Luckily he doesn't "appear sick" which is important. Who knows what could be brewing in his little body? They of course drew blood cultures and started antibiotics (2 of them!) to be on the safe side. He's not exactly happy to be back. I'm sure there will be a bit of a fuss today about being attached to a pole instead of a turtle shell backpack. Sigh. 

We will be here at least 48 hours while we await the cultures and the fever to subside. We always knew this was a possibility. They prepared us for it as we left the hospital, explaining both to us and to Sam that a lot of kids end up back here for short stays such as this -- it isn't a failure and it isn't something we could have prevented or changed. His body's system is still new and fragile and we are taking all necessary care and precautions. 

It does seem a little unfair, though, doesn't it? Oh well. As I always say, let this be the worst of it. A few quiet days in the hospital are far preferable to what "could be." Now I'm off to drink coffee and convince Sam of that.....

P.S. Solly is the one who says "aw, man!" when things don't go his way....!

Friday, October 4, 2013

Nicest Word - BMT +38

"Home is the nicest word there is."
Laura Ingalls Wilder

Sam has been doing quite well out of the hospital. Just as we'd hoped, he's eating and drinking, hanging out with his family and enjoying the fresh air. 

Sam is certainly not done with treatments. Today he received an immunoglobulin treatment (IVIG) to bolster his immune system levels. But his hemoglobin is holding steady and today is platelets were within the Normal Range. Read that again, ok? Normal Range. 

(Sleeping off the benadryl that accompanies the IVIG treatment)

There have been a few issues here that have led Dr M to tell us that it is time to


Yep. You can read that one again too!

We had always planned to be in Milwaukee until Thanksgivukkah. So we are feeling a little shell-shocked but in a good way!

Because we are not just talking about home as a vague-future-concept. 

We are going home TOMORROW. 

(Do you need to read that one again, too?)

Logistics will be figured out. He will need to be seen in Milwaukee at least twice a week. Sam is still under "lock and key" as far as crowds and germs go. But since the kids were in school here, they can keep it up. They are over-the-moon excited to go back to their home schools....

Which doesn't mean that we aren't sad to go. Ronald McDonald House has been an incredible home for us for the last 90 days. The staff and volunteers and other parents and kids have made a warm and wonderful place for us. The Milwaukee community as a whole should be very proud of the support given to this amazing place. We do not plan to leave RonMac behind and we plan to find ways to bring our support to bear on this institution in the future. 

And the JCC and MJDS communities -- my children have been cared for and educated and LOVED. My heart swells with pride at the way this amazing Jewish community has come together to help care for our family. This is how it should be -- and we are so beyond grateful. Thank you. 

For now, we are packing and preparing to spend our last Shabbat in Milwaukee -- we hope forever as semi-permanent residents. (We can come to visit, even for Shabbat!) 

We are not under any delusions that this is going to be easy...but we are trying to be prepared for this new stage in Sam's treatment and in our family's life. We have learned that we can't put joy on hold for even a moment. So we will celebrate every milestone and remember every bit of it -- good and bad. 

And thank you all for being with us every step of the way. 

Tuesday, October 1, 2013


Dear SuperMensch,

Today was the day we've been waiting for. In the last six months, there has not been a time in which Sam was leukemia-free. Today, thanks to you and your phenomenal gift of life (and the immensely skilled hands of our medical team and with the incredible support of our community), Sam is OFFICIALLY IN REMISSION. Words fail me as I consider how to adequately thank you for what you have done for us. 

There is still a long road ahead of us. We don't have all the answers. But today, we celebrate. Today, we thank and praise and bless and cry. Today, we are so very grateful. 

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

With love,
Sam and his family