Round Two

After enjoying a week off due to low blood counts, Emmett jumps back into the thick of his treatment protocol tomorrow.  He has a procedure to place an ommaya reservoir in his brain at noon.  This will allow chemotherapy to be put directly into his brain/spine without having to do a lumbar puncture each time.  The doctors consider this a minor procedure...but putting hardware into our child's head it seems pretty major to us.  Chemotherapy then starts on Tuesday and continues for the rest of the week.

The upside is that we've been through one cycle already we have a good idea of what the next three weeks hold.  The downside is that we know just how miserable Emmett's going to be which in some ways makes the second round worse than the first.

We're really grateful for the relaxing week we had as Emmett continued to recover from the first round.  Because it was a down week Micah took his first trip back to NM to work for a few days.  It was incredibly difficult to be away, but at the same time fulfilling to put 100% of his time and efforts into providing for our family for a couple days.  Sometimes the most important thing he can do for Emmett isn't necessarily being by his side.  It's so important to have means to pay for Emmett's medical care right now. 

Micah enjoyed visiting with friends and the young men from church during his short trip.  It's amazingly strengthening to talk to people who love, support, and empathize with you during a trial like this.  It's hard to describe, but knowing there are people out there who are praying with you, who are crying with you, and who would do anything in their power to help you somehow buoys you up and gives you strength to go on.  Even though there's not much anyone can do, just knowing they're there and how much they care helps you get through another day.  Many thanks all those who reached out to Micah with many kind gestures over the past few days!  The thoughts, notes, and conversations all meant so much...and the food wasn't bad either - he says he gained five pounds.  We love you!

After Micah arrived back in Boston Saturday we spent the rest of the weekend enjoying as much family time as possible.  Emmett especially enjoyed flying his new Pooh kite and a visit from his cousin Tyson!

A week 'vacation'

      Sorry we haven't put up his medical update this week and probably most of you think are thinking he had surgery and is on chemo again.  However, we went in Monday for his pre-op appointment. The visiting nurse had already been to the house that morning and taken blood draws.  When I got to Jimmy Fund, they told me his counts were incredibly low still/again & drew more blood to double check.  Sure enough, his counts were still low, so they cancelled everything for the week and told us to continue his daily shot (that we have to give him ourselves ;(  Micah surprised me and actually has experience in this department!??!  And all this time I thought I knew my husband) which helps his WBC come up faster.
      Wednesday we went back in (for the only procedure that wasn't cancelled) for his lumbar puncture.  Micah was gone so I had to go down by myself.  Luckily, I'd done Monday's appointment by myself and was able to drive around downtown and find my way and get through everything without him (although it is MUCH easier and nicer with him).  They did the LP, he recovered from sedation & had a major diaper explosion on the bed.  The nurse helped me clean him up & gave us some clean hospital clothes, then we were ready to go.  Having nothing to hurry home to, we took a walk to some of his favorite hospital spots (musical stairs, the candy store in the lobby/aka CVS, the basketball court) and were ready to head home when Dr. Mimi called and said his counts were coming up, but his hematocrit levels were low and they needed to do a transfusion.  So it ended up being a blessing that we didn't hurry home because I would have had to come right back.  She said they might come back up on their own, but he's below the level that they normal transfuse at & she wants him at his best so we can go ahead with his the operation & chemo next week.  So 4 hours later we were on our way home with Boston's rush hour traffic!
      He's been in great spirits today! We are keeping him somewhat isolated to make sure he doesn't pick up anything this weekend so we have no more delays and hopefully his counts have come back up so we can move forward with treatment.

Plus Micah's home in Albuquerque tonight and what started out as having the YM swing by is opened up to anyone that wants to come by and have ice cream sundaes and say hi tonight is welcome to do so!

Our Cup Runneth O'er

Can you guess what Emmett received yesterday?

Yes, he received his very own iPad!  It came as a gift from his friends and ward family.

But it didn't end there.  There was a package waiting for him at the post office, and what did it contain?  Yes, another iPad!  Another anonymous gift, from the "iPad Fairies" who love Emmett.

The first iPad came from our ward family back in New Mexico who we miss and love so much.  It was hand delivered by Emmett's friend Deanna who puts on a story hour Emmett loved to attend each week ("two little dicky birds sitting in a tree..."). We were literally speechless as he opened this gift.  Thank you all so much!  We wish we were there to give you a big hug!  Emmett especially loves the Lion on the back.

The other iPad - we have absolutely no idea where it came from.  The only message was that it came from people who love Emmett from across the country.  Whoever you are, we love you and thank you.

We struggled over the past 24 hours with how to blog this information...not wanting to diminish either of these gifts by mentioning them both.   Covering both iPads in one generic, non-specific thank-you post we decided against - and it would have been difficult considering they're different colors ;)

There are also many toys, quilts, and other gifts Emmett has received that all mean so much to us, though we haven't blogged about them all.  The iPads, however, represent such an overwhelming, concerted outpouring of love and care for Emmett from so many people across the country.  It touches us so deeply to know how many people love and care for Emmett, who want to help him experience a little less pain via digital distraction, who are rooting for him to win this fight against cancer.

today we have realized more than ever

SO MANY PEOPLE LOVE EMMETT!

We love you.  We thank you.  Two iPads will be especially helpful as Micah begins commuting back to New Mexico - Emmett will be able to keep in touch with "Da Da" much easier in airports and on planes with Wi-Fi and around the house if he let's Dad borrow one of his new toys.  Last week Emmett had a day  in the hospital where he only wanted Dad - before his procedure, after procedure, and that night Mom just couldn't cut it...he wanted Dad to hold him.  It will be hard having Dad away over the coming months...and having two iPads will make the distance a little bit shorter.  (This is especially timely as Micah makes his first trip back to New Mexico today.)  The chance that both iPads came on the same day and the day before Micah is leaves for the very first time is just another little miracle to us to make this easier. 

Again, thank you all, whoever you are, for all your love for our little Emmett!  He had wonderful, happy day yesterday after receiving his new toys.  Just watch!

You can't imagine how grateful, humbled, and loved we feel as a family today...loved by so many people, everywhere.  You really can't imagine.

Emmett quickly figured out that Uncle Cris left his iPad on his nightstand while he was at work. A few times he disappeared and this is where I found him. He won't have to sneak around anymore!!

Bald Eagles

We by no means are adding these pictures for peer pressure....In fact, it is quite the opposite. When Micah mentioned he was going to be Emmett's Skull Buddy, we had no intention that anyone else would pick up on that. But when we check email here and there, we are always surprised to see a picture of a friend who has also given up their hair! We love adding them to the blog just for fun and for us to have all these pictures in one place.

For this one, I had to add both pictures, because I loved the bald old man look on a kid!

MRI Results

Emmett's first MRI since starting treatment was today.  Essentially this was the first look at whether the protocol he's on is having an effect.  You can imagine that Katy and I were on eggshells.  What would it mean if the tumor had continued to grow?  What hope would we have left?  After his last MRI the surgeon showed up within two minutes to give us the results and take him off to emergency surgery.  (This is essentially what happened originally at UNM; and both of the emergency surgeries were on Fridays, just like today.)  You can imagine that left a sour taste in our mouths for MRI's.  To add to our anxiety today was the fact that his blood counts unexpectedly dropped back to zero after having climbed over the last two days.  What does that mean?

Well, the MRI showed the tumor on his brachial plexus had shrunk!  That's great news!  They were unable to conclusively determine whether the remaining tumor inside his spine had been reduced, but it also didn't look like it had grown at all (I believe there's so little left after the last surgery that it's difficult to tell what's going on).  They did note a pooling of fluid on his back near his left shoulder blade which I had pointed out on Monday, but after consulting with the neurosurgeon they don't believe it's anything to worry about.    We're still a little anxious about it but there's not much we can do for now.

So the cancer is susceptible to the chemotherapy...let's beat the heck out of it before it builds up a resistance.

They sent us home this afternoon.  We'll be here until Tuesday when he's scheduled to have the ommaya reservoir placed in his brain for intrathecal chemotherapy.  Then his next round of chemo starts Wednesday. 

We're optimistic!  We feels that prayers are being answered and that today was another miracle.  We pray the miracles continue!

A Dana-Farber Tradition

During construction of the Smith Research Laboratories at Dana-Farber Cancer Institute in 1996, a strong bond was formed between the iron workers and the pediatric cancer patients.

The tradition continues today.

Locks of Love

We were pleasantly surprised to get this picture yesterday. It made me smile from ear to ear.  A donation for Locks of Love.  Partly I appreciate this so much, because I could grow my hair my entire life and still not get it that long.  What a sweetheart!