Ryan is still inpatient. Not sure when he’s getting released. We were hoping today, but tomorrow is probably more realistic. White blood cell count is great. He’s still needing blood and platelet transfusions though. We’re scheduled to head to VT for bone marrows and scans on Thursday and Friday. We desperately want to get Ryan home for a couple of days at least before we have to leave again. We’ll see. Now that his white count is up, they did an MRI over the weekend to see if they can identify what exactly is going on in his lung. Is it a fungal infection, bacterial abscess, fluid, etc.. The preliminary report pretty much says, yup, something’s there alright. Maybe fungus, maybe not. Maybe bacterial, maybe not. Maybe something else entirely, maybe not. So the answers we were looking for haven’t materialized. The report ended by saying an MRI with contrast may be in order. Huh? They didn’t use contrast???? Geeez! Was that just so another one could be done and our insurance could get billed twice??? So the head radiologist is supposed to take a look this morning and give his hopefully much more educated opinion. Ryan is getting TPN (IV nutrition) overnight, which makes him nauseous and pukey. Great. He did have a VERY good day yesterday though. Up a lot and feeling pretty good. Enjoyed a few visitors. The Infectious Disease folks thought it a good idea to stop his anti fungal medication. There’s no concrete evidence that he indeed has a fungal infection aside from the blood tests saying he did or does. The anti-fungal medication has its own side effects so before those set in, they want to suspend it and wait to see if fevers return or he shows other signs of fungal infection again. The whole risk/benefit thing. So that’s about it on the medical front.

WARNING: The rest is long and rambling. If you’re not up for it, "x out" now.

Today is the 7th anniversary of Ryan’s diagnosis. I don’t remember a whole lot of that day. They wanted to talk to us in the family room, which was across the hall from Ryan’s room. We were too naïve at the time to realize they don’t take you to another room to give you good news. I remember two residents were there. I guess it was a “this is how you break really, really bad news to parents” lesson for them by the Attending. My friend Sandra was there…..a nurse who could translate for us and know what questions to ask. And Paul and I sitting there having no idea we were about to be hit by a tsunami. I frankly don’t remember much of what was said. How do you even begin to absorb news like that and process it?? We didn’t yet know how incredibly, horrifically bad Neuroblastoma was. Ryan was only 4 ½ so didn’t really ask many questions. He just trusted the grown-ups that all would be okay. Now the seasoned veteran, he knows the ropes. The other day, I was out of the room and a nurse came in to give him a Tylenol. The astute little patient questioned why he was getting it saying that he doesn’t take anything if his mom isn’t there. Bless his heart. The nurse explained that he was getting platelets and he knows that he does indeed get Tylenol beforehand, so he did take it. The nurse was so impressed with him and told him how smart he was to ask. Soon he’ll be asking the doctors what medical school they went to and what their class ranking was!!!

Paul and I often wonder what our lives would be like today if neuroblastoma had never sunk it's vicious claws into our boy. Seven years of VERY different lifestyle for sure. Some things are obvious. I would have been back to work LONG ago. Our plan of paying down our mortgage would hence be in full swing. Maybe we would have taken a few more family vacations. It seems obvious too that we would be generally happier. No dark cloud hanging over us. No constant worry, stress and anxiety. No need to contemplate the unthinkable notion of losing one of our precious boys. But had this never happened, would we really know how to define happiness in its truest essence. To some, happiness is a McMansion, a boat, iPads, time shares, never buying a USED car, vacation homes, exotic vacations and such. Loss of any or all of those would equal unhappiness for some. Maybe we would have been like that, had this never happened. To us, happiness is defined quite differently. Simply the absence of misery comes to mind first. Paul and I have both said we'd give up everything we own and live in a cardboard box under a bridge if it meant Ryan would be cured. And be absolutely giddy with HAPPINESS.

So this 7th anniversary of Ryan's diagnosis has us ruminating on these things. Sometimes it's hard to even remember what our lives were like BC (Before Cancer). All time is measured from January 10, 2004 AD (After Diagnosis). I come across old pictures of the boys when they were babies and toddlers and I simply ACHE for those days. I mean it can literally bring me to tears. We couldn't have been any happier then. We were normal parents. They were normal kids. We did normal things. We went to the park, the beach, sledding, play dates, birthday parties, swim lessons, etc. There was time and energy for whatever we wanted to do. I’m sure there were things we worried about, but I can’t remember them now. And we were always together. We want to hit the rewind button and get a do-over.

I was doing okay, putting a positive spin on things during with this latest hospital stay, right up until Christmas morning. Waking up - NOT to the boys scrambling down the stairs and making a b-line for the tree - but instead to a hospital room, without all of us together. It didn’t feel like Christmas, despite Ryan’s gifts piled up in front of our table-top Christmas tree. Santa came by a couple of hours later visiting each room. After taking a picture with Ryan he turned to me to say "Merry Christmas" and I was already in tears. This scene was just all wrong and it hit me like a ton of bricks at that moment. Poor Santa couldn't get to the door fast enough.

In trying to imagine what our lives would have been like, I also try to imagine what kind of people we would be. It's clear that an experience like this is life-altering and you certainly don't come out of it the same person you were when you entered. But is it in a good way or a bad way.....or both? We're definitely crystal clear on what is important in this life and what is just a lot of BS. Perspective is one of the "gifts" of this experience. We relish a dinner together or an evening on the couch watching a movie together the way some people would a Hawaiian vacation. But have we also become just a bit too angry and bitter along the way as well? Angry at being robbed of a normal life. Angry at watching our sweet boy suffer and both boys bang cheated out of a normal childhood. You only get one childhood. No one's is perfect. But not matter how hard we try to keep things as normal as possible, there's nothing normal about chemo, surgeries, radiation or pushing your brother's IV pole down a hospital corridor for him. We're angry at the agonizingly slow pace of research and new treatments. Worn down from years of watching not only our son suffer, but also watching other children we've come to know and care about suffer and die......many that hadn't even been born yet when Ryan was diagnosed, and have already passed away. Bitter thinking about what all of our lives might have, could have, SHOULD HAVE been like. But we can't forget all that we have gained and learned from this journey. As one Angel Mom wrote yesterday, "I don't think there is an honest answer to the "why" factor, but there were certainly many thousands of lessons we learnt along the journey. That perhaps without the journey, we may have never learnt otherwise...." Very true.

What about the boys? How different would they be? Would they be as close? Recently when Matthew came to the hospital, Ryan was semi-asleep. Matthew leaned over to say hello to him and Ryan reached up and grabbed Matthew's sleeve and tugged it till Matthew’s arm was across his chest and then he just hugged it and smiled, eyes closed the whole time. It was so sweet. I hope they both have developed a deeper capacity for empathy and compassion. Us too for that matter. We wonder too if our individual relationships with the boys would be different if they'd each gotten equal time with both parents instead of Ryan and I joined at the hip and Paul and Matthew alone together so much. It's almost as if Paul and I were divorced and we each had custody of one kid. Family time with ALL of us together seems to be harder and harder to come by. We have such a long list of things we never got to do with the boys. Some they're too old for now anyway. Opportunity lost.

But when the pity party starts, we don't have to look very far to find other families we know who have it much worse. Dear friends, wonderful parents and precious children in unspeakable pain. I grumble about Ryan being in the hospital for Christmas, yet so many were without their child at all this Christmas.

We've been inpatient this time for 19 days now. In the past I would have gotten to know a few other parents by now. But I don't want to get to know anyone anymore. I just keep my head down walking the halls and don't even make eye contact much less strike up a conversation. The desire to connect and commiserate with new parents is gone. The last two NB families we knew here at Children's recently buried their precious little boys. I'm sure there are others NB families here, but I’m at a point where I don't want to know them. I don't want to care about them. I don't want to hurt for them. Still, the friendships with other parents that have already been forged over the years are strong and very much treasured gifts. We’ve been in the trenches together for so long we’re like war buddies. We understand the way no one else can. Right now, several NB moms have flown to California to support little Ylaria and her family as she is now home on hospice. It is awe inspiring to witness such selfless love and caring.

You really, really should read her site.

Our Christmas tree is still up, waiting for Ryan's return. Waiting to celebrate Christmas with as much family as we can gather on what is sure to be very short notice (FYI family....be prepared to drop everything and drive to Groveland on a moments notice). But there's nothing Ryan enjoys more than family gatherings. He is SO family oriented. At least he got to help pick out the tree and decorate it, including the ceremonial placing of the "HOPE" ornament first. "Hope"….that little ember we keep blowing on to keep it alive…..as we begin…..Year 8.

Love and "100% hope",

Norma and Paul