Putting to use his Easter goodies!

And that officially (finally!) puts an end to the 2009 Easter pictures!  Now to blog Shane’s birthday!!

A few pictures still from Easter (and even more to come!) - does this vertical display work better?

Feels “cleaner” to me.  Clean makes me happy! (Organization in life is key!)

It’s been a while!  Thought you might all enjoy a few quick snapshots.  We’re still here!  I promise to still share some pictures and video from Shane’s birthday - and I even have a few pictures from Easter still!!  Stay tuned . . .

And  do me a favor - leave me a comment and let me know if you think the picture format is too large?  Take a vote!!  A) The bigger, the better; or; B) Whoa, Mama!

Our visit with Dr. Meng (at Sloan-Kettering) yesterday, did allow us to layout what our next plan was going to be.

The CT scan done on April 23 (when compared to the scan done on February 11) did show some growth in some spots that had been showing in a few of Chris’s bones.  The CT scan also shows that some of the lymph nodes in his abdomen are swollen and there is a questionable spot in one of his lungs as well (don’t know if you all remember, but there was a questionable spot on a lung found during the octreotide scan done at diagnosis.  Chris was sent for a full CT scan of his lungs and that came back clear, so who knows what this spot in the lung is - but with everything else going on, they’re just going to assume it’s disease).  The good news, is that the liver tumors are continuing to shrink from the first embolization he had on March 10!!

So, the plan is to start Chris on two oral chemotherapy drugs in 2-3 weeks or so.  Dr. Meng wants to give Chris a few more weeks to kind of get back on his feet from the most recent embolization before starting anything new. 

When this specific drug combo was in trial, 70% of patients had their tumors shrink in response to therapy and the other 30% remained stable - no one experienced any growth!  That alone is great news!    The other good thing about this drug combo is that it’s “exceptionally well tolerated”, so the side effects shouldn’t be too bad on Chris.  Nausea is often the biggest side effect, but that can be controlled with Zofran, or another anti-nausea medication.

We’re nervous.  We’re stressed out.  We’re longing for some normalcy to our lives again.  But we’re hanging in there.  We’re doing what we need to be doing to get Chris well and that is what’s important. 

Please continue to keep our family in your prayers.  Continued prayers for healing and prayers for strength.  Your support is truly the mechanism that keeps us going.

Tomorrow morning we head back to Sloan-Kettering to meet with Dr. Meng to discuss what our next steps are in our journey to get Chris well.  We’ve been told that some type of systemic therapy is likely, and that is what we’ll learn more about tomorrow.

We’ve also been looking into some other options, mostly surgical options, that would involve having to locate, and hopefully, remove the primary tumor.  We’re currently looking at surgical options at Yale and at the University of Nebraska Medical Center.  We also have plans to go to New Orleans to a top Carcinoid facility where we can meet with one, of only a handful, of Carcinoid experts to develop a treatment plan for Chris that we can then follow with our doctor’s back home.  New Orleans may prove to be another surgical option as well. 

So, our journey continues, one step at a time, until Chris is well.

His feet are still swollen from the embolization and he’s still having belly pain - so, of course, our first priority is to get him feeling better and then we’ll start crossing the things from above off of our “To Do” list. 

Keep us in your prayers, tomorrow and always. 

Much love and many thanks . . .

p.s. told you photos would be large!!

These last few days have been eye opening for us.  We have experienced such an incredible outpouring of love and support from all of you, in what I can only imagine is, in response to my post on Monday about how difficult this recovery period has been for us.

We’re gotten more cards, more emails, more text messages, more phonecalls, more blog comments, in the last 3 days that I can even count!  It’s your prayers, your gentle nudges, that have reminded us what we’re fighting for.

Thank you for being around to pick us up.  We hope you’ll all be there the next time we fall.

Much love always -

Better format.  Larger pictures.  More of us.  Stay tuned.

The last week has been rough. Tensions are high. Sleep is minimal. I think we’re all emotionally drained.

And Shane, our poor, sweet little boy, all too often lately, ends up being a “casualty” in all of this. Breaks my heart. He’s 3. He should have Mommy and Daddy’s undivided attention, and many times, most times, our attention is anything but undivided.

Recovery on Chris is harder this time around, I think because the two procedures were done so close together, he didn’t have time to completely heal from the first go around. Watching him struggle is an internal battle for me, and lately, parts of every day find me, find us, in tears. The weight loss continues, the feet continue to swell, sleep is still hard to come by, and lately, the life is gone from his eyes. He looks like a man in desperate need of a break. A break from the pain, the treatment, the recovery. Yet we know there are a few more steps we need to walk before that break will happen. That’s tough on all of us.

Chris has said that most days he feels like he’s just surviving. He’s not living. And it’s the living part he wants to get back to -we all do - and we will, no doubt. But the road is much rockier and much longer than we had imagined.

Things we used to love to do get pushed aside to make room for the things we need to do, namely, to heal. All of us. Inside and out. My therapist tells me that it’s important to not let go of the things that make us, us. The photography. The walks on the beach. The trips to the children’s museum. The walks thru the park with the dogs. The family vacations. The Sunday drives. The sporting events. All the things that make our family who we are - they’re the things we seem to be letting go off and it’s high time we regain control and welcome these things, our things, back into our life. Perhaps that is when the healing will really begin.

So - first things first, head CT came back clear!!! It wasn’t something we really ever thought was going to a problem, but still - it’s good to know that everything is fine and we’re SO thankful for the prayers and support that helped us get those results!

Chris is doing well. Nausea is his biggest complaint, and thankfully, that has been much better the last day or so. He has some pain, but nothing unbearable, thankfully.

His sodium levels are a bit low, but nothing that they were surprised to see. All in all, he’s doing well and this embolization has gone MUCH better than the last one!

His doctors are taking him off the IV today and will start him on oral pain meds. If that all goes well, and if he continues to eat and feels up to it, they may even let him go home tonight! So, we’re continuting to sit it out and wait and see what happens.

In other news, our little guy officially turned 3 yesterday!!! We’ll do a big birthday post for him later in the week once things have quieted down around here.

Keep those prayers coming!!

It’s always something. Chris got into his room yesterday around 4:30. At 6:30 his nurse came in to say that they had ordered a CT scan of his head and he’d be going back down to the 2nd floor to have that done. NEVER a dull moment!

They were concerned because one of his eyes wasn’t as open as the other eye and that eye was also appearing a bit red. They wanted to be sure it was nothing and so the CT scan was ordered.

I’m not sure when we’ll get the results back. In my heart I don’t think there’s anything to worry about. He was still pretty groggy yesterday and he’s always been one to do things like that with his eyes - he even watches TV that way. Still, it’s something else to worry about for now!

So, prayers for clean head CT scan would be appreciated! They’ve been working thus far - keep them coming!!

The embolization experience this go around has been much better and much less stressful than it was 7 weeks ago.

We were told to arrive at 8am and the procedure was scheduled for 10. Chris’s blood pressure, as great as it was last Thursday, has been high since his pre-surgical appointment on Monday. We were actually starting to get nervous that they would cancel us because despite the constant changes to his blood pressure medication this week, his blood pressure was still high yesterday.

When we got here this morning, his blood pressure was 159/93 - and we thought for sure that we were going to be walking back out the door. But 10 minutes later, they checked it again (in the other arm) and it was 152/84 - we were a go!

Chris and I were escorted down to the 2nd floor where the embolization would occur, and Jerry and Zita went down to the lobby to wait for me. Chris was quickly taken into the procedure room, we said our goodbyes as we each fought off tears and I went off to find his parents to wait.

Dr. G. came out around 12:30 to say that while the embolization went VERY well (YEAH!!) his blood pressure did in fact rise and they were unable to remove the catheter (at this point we were fearing a repeat of last time). But unlike last time, Dr. G. came out again 30 minutes later to say that they were able to get his blood pressure low enough to be able to remove the catheter and that they’d be moving him up to recovery shortly!

By 1:30 he was in recovery, we saw him around 3pm and while still groggy, he was MUCH more alert than he was the last time.

The best news of all . . . . Dr. G. thinks Chris may be able to go home on Sunday!! Sunday, for those of you who don’t remember, is Shane’s 3rd birthday! Nothing would make us happier than the spend the day together, at home, as a family! So here’s to a speedy recovery!

Many thanks for all the support and prayers. They truly are what carries us through.