Ezra saying hey to the kids who wrote him letters. Thanks kids!

(warning – this update is long 🙂

Whew… well, the doctors have been monitoring Robyn and all feel the same way. The best course of action is to keep her admitted at UCH a minimum of 4 weeks. She’s been there since Thursday already, and they want to monitor her 24/7 at least until she’s 28 weeks, and then see what from there. If the twins can get to 28 weeks it’s a much better situation on birthing – although obviously we’re hoping they get much further than that. Let’s hear it for 37 weeks!

The doctors will reevaluate at 28 weeks and hopefully let her come home (still on bedrest) then. These few weeks are critical for making sure the twins are developed and strong. They check the babies’ heart beats and check for contractions multiple times daily, as well as have these [very sexy] giant plastic boots Robyn wears which apply pressure to her legs to keep her circulation good while laying there all day… what a woman to be able to put up with all this! She’s bored out of her mind and misses Ezra and I, but we’ll do what we need to do.

To top off that situation – we’ve got no maternity insurance. And definitely not from lack of trying/preparation. After Ezra was born (which we paid out of pocket, and was no big deal), I called well over a dozen companies to make sure we were insured for the next babies whenever we got pregnant again. NONE of them would offer ANY maternity coverage for Robyn until 3-5 years minimum after the previous C section. Something about higher costs and risks. And our income is too high for state/federal coverage… with Ezra that all worked out, as there are many funds specifically for pediatric cancer, but with Robyn we’re gonna be stuck with some whopping medical bills, and no visible way around it. I’m looking into some organizations… let me know if you have any thoughts here.

Ezra’s needle biopsy for the liver lesions is scheduled for this Wednesday at 3. We should know the next day or Friday what the results are, and be able to move forward with a plan for his continuing treatment based on the results of the biopsy. Praying they’re either benign or not even tumors…

I’m good here at the house with Ezra. Kim and Kalisha (for all you Tampa folks who know them) are setting up a schedule of people to bring Robyn dinners, help watch Ezra for me so I can still work in the mornings at least, and all around help out a bit. We’ve kinda settled into a schedule of having someone watch him from 10-2 while he’s awake, then he naps from 2-5, and after that I take him to go see Robyn. So I wind up with a decent work day, and Robyn gets to see us both as well each day.

Its tough to balance everything – making sure Ezra is seeing us, making sure work is getting done, and making sure we’re all sleeping… but we have such a great group of friends around us supporting it’s been 100x easier than it could have been. And a ton of people praying. I run into people at the grocery store, Starbucks, Target… all over saying “hey, aren’t you Ezra’s dad? We’re praying for you, hang in there..” etc. We really appreciate everyone’s encouragement and help.

Working for churches off and on in some capacity for well over a decade I understand it’s easy to get jaded and caught up in the pettiness of people’s focus. Too often I see people (and catch myself) more worried about who gets what building at what time and if someone is behaving/talking/looking the “correct” way rather than realizing God’s mindset, intention, and M.O.. Moments like the past 5 months for us are refreshing reminders the heart of God is still vibrantly active, necessary, and effective. As much as these situations cause doubt and hurt in us, they keep showing us how prevalent the needs are around us and how powerful helping is. Robyn and I’s hope is our rough times would not be pointless struggle, but would challenge folks to see the needs around them and make conscience efforts to address them wherever we can. You gain a little perspective on what matters when it’s put in jeopardy – a life centered only on your own needs will never satisfy you like one in which your aim is to be purposefully attentive to the world around you. Whether that means something as crazy as moving to Africa to teach basic health, Bible, and sustainable economy among other things (looking at you, Mike and Deb!) or just grabbing the door for the lady who’s got two bags and a kid in her hands at the mall… it’s all the same mindset.

Back to work…

We heard back from St Joes today, and they said after looking over his scans (including yesterday’s MRI) they would like to do a needle biopsy of the lesions in the liver. They’re not sure the lesions are even tumors (it could be just lesions from the tumors earlier in the treatment), and if they are, whether or not they’re cancerous. The needle biopsy, guided by CT, will be able to confirm.

If the lesions are not tumors, or are not cancerous, we will be able to simply move forward with the surgery as planned! If they are in fact still cancerous tumors, we’ll need to look further into the best way to handle them in his treatment.

Also – we seem to be having a medical year. Today was Robyn’s normal 24 week appt for the twins pregnancy. They discovered she was 1-2 cm dilated, which is supposedly not uncommon with twins. However, it IS cause to look closer, so we’re currently admitted at University Community Hospital on Fletcher while someone is watching Ezra at the house. A normal pregnancy term is 40 weeks, so obviously this is very early to be having any sort of labor.

The drs here will monitor her for a minimum of 48 hours, and as long as the dilation doesn’t increase, and she isn’t having contractions (we’ve been here over an hour and they haven’t seen any, so that’s a good sign), she’ll be released to head home, and will be on bed rest the remainder of the pregnancy (3 months!). We can handle that – we’ve got a great group around us to help.

IF in fact she IS having contractions, or dilates any more, they’ll need to give her some drugs to slow that down. They’re already going to give steroids shots for the babies to speed up lung development, just in case they ARE delivered prematurely (even in 8-10 weeks, etc). Best case is everything is fine, dilation stays where it is, and we head home and put Robyn on bed rest for a few months. Worst case, they slow down the labor and the babies are born in 3-4 weeks (they’d like to at least hold it off that long). Please pray it’s best case. 😉

Looking forward to a nice, calm, slow 2011. 😉 Crying babies and lack of sleep seems like a perfect day compared to the past 5 months!

We had a meeting with the surgeon today, and the news is both good and .. average, I suppose, not bad.

The main tumor has shrunk from 11 cm when we first found it to only 5 cm now. This is VERY good! It is located on his kidney, and while it’s wrapped around the kidney blood vessels, it’s no longer near the aorta – which is very good. Removing this is still a delicate procedure due to the involvement of the kidney vessels, but is worlds easier than it would have been if the aorta was still an issue. IF this was the only remaining tumor, we’d be able to schedule the surgery immediately and move forward with treatment as planned.

However, there are also 3 remaining tumors in the liver which were there when he was diagnosed as well. They are considerably smaller now, but still there. This means the chemo is working, but has not killed them off yet. Because of this, the surgeon and Ezra’s oncologists need to sit and chat over the next course of action. The liver is on the other side of his body, so all the tumors could not be removed with one surgery. Also, they are in both sides of the liver – one is accessed near the middle of the body, the other the left side. In other words, removing all 4 tumors requires careful attention – and surgery may not even be the best option for all 4. Our surgeon is also talking to some other oncologists who have a method of “freezing” the liver tumors so they no longer are active. A 6th round of chemo BEFORE the surgery is also not off the table – the surgeon wants to go over the pros and c ons of that with Ezra’s oncologists as well to see if that would have a large affect on the liver tumors.

To sum it all up – everything is still looking good, and responding well. The liver tumors are a bump in the road which require careful consideration and some attention in how best to deal with. Dr Kayton (the surgeon)’s words were “this isn’t a text book case… we need to tailor something specifically for Ezra” – which is a good thing. No one is worried, and the treatment is all affecting him positively. Dr Kayton will be getting back to us within a week or so with answers/options on what we do next.

Whew!

Alright, alright – everyone is asking for more updates. Well, so far nothing much to say is why I haven’t updated anything! At least no news is good news. 😉 Ezra has been recovering the past couple weeks from the 5th round of chemo – which he did admirably. His labs never dipped at all, which the doctors couldn’t explain – but it’s good.

Last weekend we got bone scans done, and his bones are completely, 100% free of cancer. Wednesday, yesterday, and today we’ve been at St Joe’s getting a second MIBG scan to see the size of his main tumor. We have an appointment with Dr Kayton (the surgeon who will be removing the tumor) this coming Wednesday to go over the scans with him and, assuming all looks as good as everyone thinks it will, schedule the surgery for shortly after our meeting. We could have the tumor removed before March reaches us!

We’re working on trimming off extraneous commitments in an effort to regain some sanity in our schedules. I’ve backed out of doing the web stuff for Grace Family Church, and we’re both taking solid looks at what we give the most time to, what we enjoy most, and how we can make sure the two are the same. It’s been good, and necessary.

Oh – we found out both the twins are going to be boys. Or rather, are already. 😀 Which means… come mid-June, we’ll have 3 boys under two running around the place. Walk in the park…. 😉

I’ll have more info for you all come Wednesday!

We got home from the 5th round of chemo Friday afternoon, and Ezra did very well once again! It was Gasparilla week, which for all you non-Tampanians is a festival/parade Tampa does… which basically features pirates and beads. The hospital had all the kids who were there put together a big parade with floats made out of hospital beds and wagons… and Ezra led the parade! I’ll upload a couple of photos here on CarePages. Pirates were all over the hospital this week.

My mom was great as well this week – staying the night Thursday night so we could go home and sleep while Ezra did. It’s impossible to get any rest in the hospital, as nurses are coming in every few hours, Ezra’s diaper needs to be changed every other hour (the chemo drugs are in his urine during the treatment, and shouldn’t sit on his skin for long), and there’s two of us sleeping on a plastic couch smaller than a twin mattress. So thanks, mom, for the rest.

We spoke with the drs a good bit this week, and it looks like since Ezra was stage 4 when he was diagnosed, we WILL be doing the stem cell transplant after the surgery. Surgery to remove the tumor is most likely going to happen within the next 2-3 weeks – soon. It’s a long surgery, 8-12 hours, and complicated. Please pray this will go well – I’ll have more info to share once we get it actually scheduled, and again when we come to it.

Robyn’s mom flies in tomorrow from Seattle (she’s been here a week or so out of every month since Ezra was diagnosed), which will be good – she’s also a big help when she’s here. Thank God for moms.

Robyn has become a regular social worker/encourager at the hospital – every time we go she disappears for a couple hours at a time, and when Ezra and I go to look for her, she’s always chatting with some mom who is just finding out about THEIR kids’ cancer. They have that same look we did the first couple weeks – shock, haven’t slept in days, overwhelmed. And Robyn talks to them, sharing her feelings she felt, how much we’ve learned so quick, and answering questions/offering her number. Good woman.

Thanks for all your prayers…

Well, we were all scheduled to have Ezra’s 5th (and perhaps final) round of chemo start today. We got to the hospital (St Joe’s) this morning, and had his labs done. Turns out his numbers were a little lower than they’d like to start chemo (completely normal, nothing to worry about, just means we wait a few more days to let his body recover a bit more), so we’ll be going in a week from today (next Monday) for chemo. This is actually good news, because he’s been eating like crazy and very energetic and playful the last week – so it just means we’ll have another week of good times fattening him up. This round’s chemo drug is the same as the 3rd round, which is one that gets him sick, and he doesn’t eat very well – so as fat as we can get him going in is good. 😀

It still looks like after this round we’ll be getting the surgery to remove his tumor, sometime in mid-February. Could it be over then? There’s a few different medical options after the surgery, which we’ll discuss with the drs more once the surgery has been done and they can see all the results of scans and how the surgery itself went. We may wind up only having to keep an eye on him and have a few drugs he takes over the next few months – nothing requiring being admitted – then just monitor for a few years and make sure it’s gone completely! Amazing.

There’s a few strange feelings we get around this time. On the one hand, it almost seems its been too easy – not that it’s been a walk in the park, but we’ve been extremely blessed to have solid friends and family around us constantly picking up the slack where our strength/time/energy fades. The possibility we’re only a few months away from this being over (at least this chapter) almost leaves a guilty feeling it should have been harder. But if I look at the events, feelings, and struggle it’s been so far and still is, I realize it IS hard – it’s just our joy remains even when our happiness doesn’t.

Doubt still creeps up on me in the most random moments, and there’s times I’m mindlessly going about my business when I suddenly am sad, or nervous… the overwhelming feeling which remains constant though is a faith God’s aware of Ezra, Robyn, the twins and I, and holds us in His hands. That’s the strength I lean on, and that’s the source of the joy we live with regardless of the crap on our boots as we walk. Circumstances are temporary.

http://www.youtube.com/watch?v=zSI7weyx75k

Paste that in your browser, people. Cute kid.