50 Years?

Today on facebook, Joslin shared a list of all of their recent research finds. These are obviously meant to be positive - possible hopes for a future cure.

This piece, however, struck an unintended nerve:
Study Finds Individuals with Long-Term Type 1 Diabetes Still Capable of Producing Insulin: Surprising Finding Gives Hope to All With Disease
June 8, 2008 – Researchers at the Joslin Diabetes Center in Boston have discovered that a significant portion of people who have had type 1 diabetes for 50 or more years still have the capacity to produce insulin, a finding that has potential implications for improved treatment for all with the disease. To read more, click here: http://www.joslin.org/1083_4367.asp

It is definitely an interesting piece. After diagnosis, you spend a decent amount of time wondering when the "honeymoon" will end. When will the pancreas finally stop producing insulin all together? To be honest, in some ways I was eager for the honeymoon to end, because I thought that things would be more predictable. No more would TJ's pancreas somehow sputter to a start again, kick in a little insulin, and send him low. Or let us down when we were counting on it, if even for a small bit of insulin production.

But this study suggests that even after 50 years of living with diabetes, some people are still capable of producing insulin. The lead doctor goes on to say that this finding could lead to a possible change in treatment, if they find ways for people who have had diabetes for less time to produce insulin...BECAUSE, he says..."it's very rare for someone to live with Type-1 diabetes for 50 years."

Well, then.

I've posted before about my concerns for TJ's long-term health. But I can't say I've been viewing diabetes as a death sentence. TJ was diagnosed at 6. Does that mean that it will be unusual for him to live to 56?? Obviously so much could, and most likely will, happen in science and diabetes treatments over the next 50 years. There is no way to predict what Thomas' diabetes life will be like. I'm sure people who are in their 50's now and using an insulin pump never imagined they would be - especially when they were measuring their BG with urine strips and taking insulin only once a day.

But still, I generally defer all diabetes opinions to Joslin. So far they have proved to be nothing but amazing in their understanding of diabetes and their commitment to a cure. Hearing right from that particular source that it would be "very rare" for Thomas to live longer than 50 years. Too tough to take.

4 AM

After struggling through Saturday evening with keytones, we put Thomas to bed in the 300's, with keytones going down. At 9:30 things looked good, with a number nicely in range. He needed a correction (by injection) again at 11:30, but the keytones were still low. I kept the temp basal up for another hour, just to see if I could keep the keytones at bay for good.

Tom checked at 12:30 - great number -165, but he didn't check the keytones. Why, you ask, did Tom not check the keytones when the whole problem has been keytones, not BG numbers? Yeah, I don't know either.

4 AM...BG is 59 (How! Did it get. So. Low). Keytones are 1.2 (What?!?! His BG is 59). UGH.

So Thomas was treated to a 4 AM gatorade to bring the BG up (97 by 4:30, with keytones down to .5), followed by a 4:30 yogurt drinkable and an injection to cover/bring the keytones down. Assisted by a 2 hour increase in the temporary basal rate. I was treated to a few waking hours from 4 - 6 making sure I didn't kill my kid with insulin. Oh wait, that's not a treat.

7:45 AM - BG 114, Keytones 0.1. Ahhhhhhhh.

Hopefully we can stay more on track today.

If there is an upside here, I suppose it is that the whole keytone situation is easier to manage with the pump. Certainly there is no way to do a temp basal rate without the pump, and with MDI there would be ongoing concern about the IOB from a long-acting insulin. Of course, the 'freedom' of the pump seems to be what is getting us into this keytone trouble in the first place, but that just might be a whole separate post.

Geocaching, traffic and...keytones. Oh My!

It was a definite non-beach-day today, so we decided to embark on an "adventure" with the Earleys and explore some of the caches in the Nickerson State Park in Brewster.

The day started off traffic-y - which shouldn't have been a surprise, I suppose, for Saturday July5th on Cape Cod. Out of character, Tom hadn't objected when I mentioned our plan - but then again, he wasn't coming.

We did make it to Brewster within an hour, and had a great time searching for (and finding) a couple of caches overlooking Cliff Pond. A great spot, and fun finds.

Stupidly, though, I let it go too long without a big meal for TJ. (Supposedly with the pump he can skip meals, but this hasn't been our experience...those "starvation" keytones come on fast.) His numbers were great - staying right around 120 all afternoon, and he did have a snack and bolus at 2:00. But by 4:30 he was complaining, and I could tell he was getting keytones. Sure enough, his BG rang in at 126, but his keytones were climbing - technically OK, but still higher than I would like - 0.4. Mikey helped him with a bolus and a snack while we sat in traffic with a capital TRAFFIC and I found myself understanding my fathers lifelong resistance to Cape Cod.

Suzanne navigated us around a bit of route 28, and we hit a Sea Food Sams. TJ was still belly-aching (quite literally, I'm sure), so I bolused a little low for his 3 mozzarella sticks and bowl of chowder, not sure of how much he would finish (not to mention totally clueless as to how many carbs are actually in 3 mozzarella sticks and a bowl of chowder).

TJ seemed better, but when we got home (in much less traffic, I might add) he started hanging his head over the pot. UGH.

6:30 PM - BG is 446(!!!) and keytones of 1.4. Injection of 2.5 and temp bolus of 125% for 30 minutes.

7:30 PM - still a wet rag. BG is 460 and keytones of 1.7. Now we're going in the wrong direction.

A call to Joslin let us know we were doing things right, though (something I never mind hearing), and the doctor on call had us bump the temp basal up to 150% for 4 hours.

8:15 - he's down to 334 and keytones of 0.4. Phew! Not out of the water yet, but in the right direction. At least we can put him to bed.

9:30 - 143. Keytones of 0.2. Ahhhhh.....

Are we out of the woods yet? Time will tell. The last time this happened we fought keytones for a couple of days, but 0.2 I'll take.

CAMP-Y

Today marks the end of the kids week at Camp Farley!

Although I had driven by a few times, I had never given the camp a second thought until Sally mentioned that she would be sending her kids, and that the camp employed a full time nurse. (As always, my friends are graciously looking after TJ.)

I was nervous at first, but met with the nurse last week. She was eager to do anything I asked, and I felt confident that even if his numbers were not perfect, TJ would be safe at camp. Deb (our amazing Joslin nurse educator) helped to calm my fears a little, too, by reminding me that any nurse is totally capable of managing his daily care. So...off the kids went.

And...they have loved every campy minute of it. Walking through the Camp Farley grounds is like stepping into some '80's movie about camp. There is an outdoor stage area with bleachers built into the hill called - that's right - Council Grove. At Council Grove they kids have picked up many a traditional "camp" song. Council Grove overlooks the pond where they have swimming lessons and the many cabins for the overnight campers. The kids have produced yards and yards of gimp projects. This camp is so stereotypical, it is hard to believe its real.

Five days of hanging without the kids hasn't been too shabby, either. Taking a break from constant parenting, and from constant diabetes management, to just work in the yard, go out to breakfast, actually tan my back at the beach...I'm already planning for next year, when the kids will undoubtedly be enrolled in another session of camp.

Don't you know ANYTHING?!?

At baseball last Saturday, Thomas' pump escaped from his waistband while he was running home. Not to be deterred in his (automatic - this is junior baseball, after all) score of a run, he grabbed the pump by the tubing and continued on.

As he returned to the bench, Tom witnessed the following conversation (and yes, this whole post is hearsay, but still, a mom's gotta brag every now and then):

Teammate: "What is that?"

Thomas: "My pump."

Teammate: "Well, why do you have it?"

Thomas: "Because I have diabetes."

Teammate: "Well why do you have that?"

Thomas (insert pithy tone and eye-roll here): "Because I have diabetes...my pancreas doesn't work."

Well obviously!

Pumped!

Well, despite a two month hiatus from blogging, Thomas is pumping with the best of them. I have actually been holding off on this blog post until I could include a photo or two, but life has been a whirlwind, and I don't have any photos. I do have a day, off, however, so I'm updating the blog. Words only will have to do.

Thomas was "officially" hooked up over April vacation, and things have been running very smoothly since then. It's amazing how quickly the new "normal" replaced the old "new normal" of MDI (shots) therapy.

Thomas is pretty quiet about the pump, but when pressed he has all good things to say. Sure, most of them are verbatim things I told him would be good about pumping, but still, I think he likes it. It certainly has made life easier on our constantly on-the-go family. His numbers have also been much better.

Thomas has also been able to take even more responsibility for his care, which is nice for everyone. He is (as always) great about testing, and most likely could use the pump totally on his own if we would let him. As it is we have to slow him down to keep up with him. He was able to give a very detailed description of how the pump works it's magic to both Gram and Nanny, and successfully completed an overnight visit at Mimi and Papa's. Overall, the pump rocks!

The beach might be interesting, but all else is fantastic. The pump definitely minimizes the (inevitable) disruptions that diabetes brings with it.

Seeing the Future

When Thomas was admitted to Children's Hospital almost a year ago, the constant message from the doctors, nurses, social workers, and child life staff was "you can do it." A large team of (very-well paid) cheerleaders, the CH crew made it their goal to drive home the message that life with diabetes was manageable, even swell.

Part of this, I'm sure, is survival on their part. There is a lot that parents (and children) need to absorb in a short time. In order to confer the most basic and important information, and be sure it sticks, the staff needs to focus on it and only it. The checklist is out during every meeting, and the staff is slowly but surely checking off all the requisite skills: drawing up insulin - check; treating a low - check; counting carbs - check; planning a meal - check; and the list goes on an on. There is just not time enough in the three or four days to dwell on anything but the necessary, and in order to do that, they need to keep parents in an up-beat "you can do it" frame of mind.

But even with all the cheerleading, the concerns creep in. At first, my concerns fell into one of two categories - self-centered or Thomas centered. Will we be able to eat out? Will we be able to leave Thomas with a sitter? Will he be able to play at his friend's houses? Will I have to quit my job. The worrying was endless, but it was all about our lives at the time.

Now, though, almost one year later, my worries have grown to those topics that were pointedly avoided at Children's: the life-long complications that diabetes carries with it. Although no doctor has laid the "risks" of type 1 out for us, it has become clear that there is not a part of TJ's body that is not open to the devastation that D can bring with it. Dentist appointments and check-ups - previously a nagging but minor concern - are now at the front of my mind. Diabetes advertisements that were background noise before are now red flags. The ubiquitous "ED" ads that once made me blush now remind me that if, in fact, I don't keep those numbers under control the consequences will resonate in every part of TJ's adult life (even the parts I would otherwise choose not to think about.) "Will he be able to go over a friend's house" has been replaced by "Will he see his grandchildren?"

In reality, none of us can see the future for our children. There are many tragic endings all parents avoid thinking about. Will diabetes ultimately get the better of Thomas, or will there be a cure in 15 years. No one knows. Each high or low number on the meter (heck, each test on the meter) stands as a reminder that we might not be doing enough to keep these complications at bay. But, today, almost one year in, Thomas is a healthy, happy boy who happens to have diabetes. And that is as far into the future as I can see.