News on the future and going home

They told us earlier in the day Jenson would be discharged today (which we half believed given all the complications we've been hit with over the past 9 days). Before we left, we were waiting to talk to our oncologist about the biopsy results and what the future might hold in terms of his treatments.

She stopped by in the afternoon. She is incredibily patient, really good with Jenson (gives him time to get comfortable before doing anything... she'll even check his beloved bunny's ears before checking his to help make him comfortable), and really good with us in terms of explaining things. She's always looking for the root cause of issues. We feel like we're on the same wave link with her and the way she explains things always make sense to us. We really like and respect her.

She first makes friend with Jenson and then starts talking to us about the results. She said she wasn't very surprised at the results, but does want to get the actual copy of the last stains from UCSF so we can do a side by side comparison to see if there was any progress at all. She also said she was somewhat surprised not to see more issues in addition to the LCH cells in his colon area because one of the things they measure when they draw blood levels called "albumin" has always been low for him, and her suspicion was there was more activity happening in his colon (this would also explain why the liquid iron we used in the past wasn't absorbing). She said now that an additional issue in his colon is ruled out, she is wondering if it's his liver causing the issue (ie not functioning properly - yikes!) or if it's just diet related. You can imagine which of those 2 we're hoping for...

We also need to see if the LCH (histio) activity in his bones has gotten worse, better, or stayed the same to inform what we should do moving forward. She suggested doing all the bone x-rays and assessment of the liver at the same time, so looks like a CT scan is in our near future once he recovers from the surgery.

She also talked about future treatment options which unfortunately because the research on histiocytosis is so limited they don't have studies indicating what is better (further reason for me to do whatever I can in the future to raise $ for research, but that is another blog entry). There are basically 4 options:

1) Stick with what we're currently doing (vinblastine & prednisone with 6MP) - We're leaning against this one because it doesn't seem like we've made any progress over the last 5 months. She also indicated with histio cases they typically try something for 6 weeks and then move to something else if those chemo meds aren't working (in Jenson's case we can't do an endoscopy/colonoscopy every 6 weeks so our timing has to be longer)
2) Switch to methotrexate - She said this is more of a lateral move from our current treatment. They also did do a study with this chemo drug and it tended not to be more effective that just vinblastine & prednisone, so we're not leaning towards this option.
3) Switch to a slightly more aggressive treatment with totally different chemo drugs of vincristine and another I can't remember the name of and a very different pattern for administering.
4) Switch to a much more aggressive treatment with a chemo drug called 2CDA which is VERY immuno suppressive (even more so that what we're on now).

Our decision will depend on the results of the CT scan, so for now pray for wisdom for us on which path to take.

Passage from the book "God-winks" that I've been reading:

"Terrible things happen to everyone. Sooner or later, we all have to walk through the valley. In the Bible, David never suggested we could go around the valley or over it. We all have to go THROUGH it. But the nice thing about valleys is that there is an end to them. No matter how dark it seems, there's a time when it will end and you'll break into the sunshine. And THAT is the concept you need to hang on to- that there IS an end to terrible times, to the feelings of loss of control and to the total absence of suitable rememdies. Valleys also have signposts. All along the way God provides winks of reassurance for you to see. Just like on the darkest interstate, a signpost every once in a while is a welcome message of reassurance - a reminder that you're on track, to keep going."

This is a very, very long valley. The deepest, widest, longest valley we're ever had to walk through. It even feels like it has rock slides that happen (like this past week) that completely level you, but we all keep getting up. We'd love to see sunshine soon, but it looks like it may still be a ways in the distance. We did get one wink of reassurance as Jenson was discharged from the hospital today.

We got to go home!!! He still needs lots of help and we have to watch closely for fever (which would mean we're right back in the hospital), but for now we're celebrating.

He was soooo happy to be driving home. As we're driving in the car, he likes to call out the names of places he recognizes and this drive home was no different. "It's Target! It's Chuy's (my favorite mexican restaurant). Mommy, it's Chuy's. Costco! It's Target again. That's funny". So cute.

We picked Sydney up from school as a family for the first time in over a week, and we were all so excited to see each other. Sydney and Jenson sat in the backseat looking at each other the whole way home and smiling. Everyone slept in their own beds. There is peace and rest at least for one night. That's a sign-post. Hopefully we'll see more as we could use the continued encouragement.

Keep praying for sunshine.

Kristin