Brightness...

We just got the results of Sam's bone marrow biopsy.

Drum roll....

Leukemia free!
AND upon further testing to seek out the most minute amount of leukemia .... His marrow was CLEAR.

Don't get too excited - there are still three rounds of chemo to go.

But for today - we weep tears of gratitude and joy. In this moment of victory we know there is still a long road ahead of us. And I'm not a doctor.

But I think it just got a tiny bit easier.

That tiny pinprick of light?
It got a lot brighter today.

Thanks for being with us on this journey. Keep the prayers and hope and love and encouragement coming.

They are working.

A Little Owie

That's how the nurse described the bone marrow biopsy to Sam: a little owie. I admit, we didn't really go into detail about it or the lumbar puncture (aka spinal tap) that went along with it. Vague explanations seemed to suffice for Sam's overactive imagination.

Outpatient stuff is great, in that it feels like a nice visit and then they send you home. Everything went according to plan, except that Sam had a little trouble after the anesthesia...just a crabby comedown...which is, you guessed it, somewhat normal. Oy.

So now we just rest on the laurels of the good lab numbers and wait for the biopsy results, expected on Tuesday and followed by admission expected on Wednesday.

Wishing you all a Shabbat as quiet and peaceful as I hope ours will be. Shabbat shalom!

PS see below for pictures...Sam in the pirate hat garnered him a ton of attention in the hospital and the other collage is of the fancy duds that Michael got to wear to go back with Sam while they put him to sleep. How funny that Michael needed to wear all that stuff and Sam wore his own clothes and even his shoes for the whole procedure!!!

Quick update on our hero

When we last left our hero...we were waiting for labs and such....

Today's labs:
White blood count: 3.8
Hemoglobin: 12.2
Platelets: 339
ANC: 1161

!!!!!!!

Bone marrow biopsy scheduled for tomorrow.
Tentatively scheduled to be re-admitted on next Wednesday to start round 2 of chemo.

Stay tuned...same batchannel!

To Shabbat and Beyond!

When we last left our hero....we were headed up to OSRUI.

Let me tell you, it did not disappoint.

Shabbat at camp is an amazing thing in a normal situation.
But for us...Shabbat at camp was like manna from heaven. We really and truly felt like the whole camp was giving us a big hug.

Swinging outside the Lodge

David was overjoyed to see Sam (and Yael). It was really like we (his parents, who gave him life...) did not matter at all. In the grand scheme, this is awesome and wonderful. I love that he is so content at camp that our presence did not cause instant homesickness. We hung back a little, to let him show off his sibs, and it was really lovely to see the three of them sit together for Kabbalat Shabbat services.

David introduced Sam to all his buddies. It was adorable.

Sam sat with David in the Tzofim section...I only checked on them twice and I only put hand sanitizer on Sammy um...four billion times.

Solly didn't join us but isn't this a nice picture!? Thanks to the JazzRabbi for taking it!

The rest of our Shabbat was relatively unremarkable, which is so lovely to say.

Today, David came home from camp just for two nights, and I don't yet have any pictures of the Sommer Four....but of course, I will. I was scolded tonight for not having written a blog post, and I must tell you....I'm so glad that I have nothing to say.

Aside from an enormous battle to take the two-day-a-week-antibiotic (we only take it on Saturdays and Sundays), there is really no medical stuff going on in our lives. What a nice thing. I am a little nervous about him all the time...I'm sure that won't change for a long time. Every so often I find myself forgetting that something is "wrong" with him...and then I just glance at his cute little bald head and it comes crashing back to me....

We're expecting a visit from the home health nurse on Wednesday to draw a set of labs...so we can determine if we go back to the hospital on Friday or Monday. If you don't hear from me for a few days....don't panic. I promise we are trying to do normal boring things like go to the movies, build Legos, hang out in the backyard, and clean the basement.

--

Other things going on....

The Blood, Sweat and Tears Charity Bike Ride of the Leukemia & Lymphoma Society is on September 30th. Our friend Ellie has created Team SuperSam and you can join in to raise money for this incredible organization devoted to eliminating cancers just like Sam's.

Two other Cancer Warriors are doing their own Team in Training and honoring my Sammy. Click here for Ken's page and here for Brad's page. (Brad is doing the same ride that is linked above...he is doing the endurance part of the ride but you can do a 5 mile family bike too!)

We also hear that you can eat at CPK to donate to LLS, which is just a fun way to both eat and help out...

 (I am not necessarily endorsing anything or telling you to do them, just wanted to pass on these great possibilities.)

Life at Home in the New Normal

Since we've been home it's been both wonderful and strange. There was definitely an adjustment period (it might still be going on) between the kids. Yael desperately missed Sam but is having a hard time sharing with him. Sam desperately missed Yael and can't understand why she still can't share with him if she missed him so much! No beeps or whistles, no nighttime nurse visits. (Michael keeps threatening to poke him at 12, 4, and 8 just to keep him on his toes...)

We had a visit from our home-care nurse to draw a lab and just check in. Since then, I've become a pro at flushing the IV lines.

We went to a movie (Madagascar 3) and ate a whole bag of popcorn. Friends and family alike are so happy to share in the love.

Michael and I are trying to balance our fear that "something" will happen against our desire to give Sam great experiences while he's home. Last night we were very nervous when he threw up his whole dinner....and then some. We immediately called the hospital - the nurses told us to call them directly for any concerns, which is like an amazing 24-hour hotline with incredible competence on the other end. The charge nurse assured me this was ok and helped to calm me down...and he ended up going back to bed with no more trouble. Perhaps three helpings of spaghetti and a whole bag of popcorn and whatever else he ate WAS too much.

Today we had a clinic visit. Originally we had been scheduled for a bone marrow biopsy but they decided to push it back to next week. It was so weird to go back to the hospital (clinic on the 2nd floor, HOT unit on the 5th) and see all the staff that had become like family in the 28 day stay. They answered questions and gave us a tentative return date for bone marrow biopsy, spinal tap, and the beginning of Chemo Round 2 (next Friday or Monday)...I felt a little comforted that we brought him home and didn't "break" him. It does feel a little hardto believe that we have him home...there's a sense of fragility, not in his physical presence but in the whole situation around him.

Then a quick visit with Bubbie and Bionic Zeyde (proud recipient of a new knee)...Zeyde hasn't seen Sam since his knee surgery a couple of weeks ago so he was glad to hug his grandson and share hospital stories!

Last Shabbat was spent in the hospital.
This Shabbat we are headed up to one of our favorite places on earth...OSRUI.
Sam told me how much he wishes we could spend even just one night sleeping over at camp...one Shabbat dinner will have to suffice. I know it will fill our cup to overflowing with the love that we will give and receive in the 53066 (my favorite zip code). (And giving my biggest kid a hug won't hurt either...but I'm sure he is way more excited to see his brother than his mama...as evidenced by the lack of letters I have seen in my mailbox)

Wishing you all a Shabbat as wonderful as I hope ours will be.

(I'm posting from my phone so all the pics are at the end...scenes from life at home and on the road!)

7:30am Yesterday...Mission Take Sam Home

Ok, ok...so I skipped one blog entry and got straight to the good stuff, Sam at home yesterday.

The truth is, when the nurse and then the doctor told me we could take Sam home yesterday I was like, "You want me to what? What was the middle part again?" I was happy, worried, sad that I had to miss dinner with some friends from camp and petrified...I was petrified because I knew I had to somehow carefully dismantle Sam's entire room and pack weeks worth of stuff in a few hours. Hundreds of photos, posters and letters had to be removed from the Wall-O-Sam and preserved for Sam to look through on the other end of this long road.

My fears were put to rest when the cavalry arrived in the form of our good friends Michelle and Aviva.

Without their help I never could have gotten the room prepared for Sam's departure. With their arrival all my fears dissipated as we all got to work, talking, laughing with Sam and reverse-engineering all the love, prayers, cards and pictures into a portable form.  The pictures came down revealing a door, some walls - a room minus the life your prayers and love filled it with.

 The pictures piled up on the bed one by one, so many smiles and superheroes cheering for this day.

 

Smiles and balloons and Angry Birds!

 

Until there were none. Returned to its original state, a room waiting to be filled with fear, tears and sadness before it can be filled with hope. Empty, the room waits for the next family to fill it with the next child who needs it. My hope is someday these rooms stand empty, a day where all our prayers are answered. If that day isn't possible then I wish for a time when families are in and out so quickly they only need be admitted for a day or so before their lives are turned back to normal. I don't wish this room on anyone. But I do wish all families had such an incredible support group as we have. I know our nurses and doctors loved Sam with all their ability to make him comfortable and give him the best treatment and care. Their smiles, laughter and training brought Sam and us through the worst month of our life. 

I wish we could be there for any family that needed us to fill these walls with love, hope and prayer whenever our Bat Signal or Spidey senses went off. All the hope, prayers, love, cards, pictures and posters gave me the strength to look each day in the eye and count all the blessings that filled our every day even when Sam was feeling his worst.

Yes, I went through the day with fear of being fully responsible for Sam's health, flushing his lines and bathing him carefully. I took these photos not knowing what the next ten days hold. I looked forward to all the laughter and smiles without the sounds of hospital bells and whistles.

So our initial time has been served. The joy that fills my heart knows no bounds. Sammy is joyously taking in being home, seeing his family and friends, eating the foods he loves and sleeping in his own bed. Thank you all for taking this journey with us and filling our lives with such incredible prayers and love.

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Phyl's turn:
People have asked us - what's next? So a quick run-down of answers:

1. What's the time frame?
We don't have all the answers but for sure we will go back to the hospital for the second round of chemo. When I mentioned to the nurse that they might just forget about us....she laughed and told me that isn't possible. Oh well. We will probably be back in the hospital sometime around next weekend for another full month. (And then we'll lather, rinse, repeat...)

2. What if we want to send Sam mail? What if we already sent something to the hospital?
We asked them to hold any mail that was sent to Sam. Hopefully they will do so! If something gets returned to sender - we are sorry! If you are planning to send Sam mail, please wait! We will let you know when we go back to the hospital and you can send it then. Sam loves all the mail so thank you thank you thank you!

3. Is he allowed to do "normal stuff"?
We are very excited that he is allowed to do a lot of what he likes to do. No swimming, thanks to the central line, and he is very sensitive to sunlight. Other than that, we have a lot of clearance. He's so excited to go to the movies and eat his favorite stuff.

Thank you for all the love. My heart is so full....

The King has Entered the Building!

Home sweet home never felt so good!
Thank you all for so much support, love and prayers. We couldn't have done this without you and still have a bit of road to travel. But oh it feels so good to have some moments of respite at home.