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.

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.

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, but....so 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 new...to 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. 

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.

Back Home!!! - BMT +53

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

Ah....

And hopefully we will just stay here. 

We are embracing the new normal....

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 birthdays....you 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.

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...