Entries Tagged 'John' ↓

we took the training wheels off john’s bike and started really training. I think he’ll be up riding by tomorrow.

Lately I’ve been particularly enamored with John’s humor. He has a quirky and irreverent style that I really enjoy. Here’s a moment.

John and Julia hosted a play when Max and Charlie were here. It was a big hit with the family. They watched the video over and over again. Recently, I thought it would be fun to film their reactions to watching their movie about a month post recording. They haven’t lost their affinity for it and even recorded a new movie today with a slight variation.

Don’t you wish you had the first photos you ever took?

Not long back, John got hold of our Family Digicam and went to town snapping pictures of just about everything. I didn’t put him up to it at all. As you’d imagine there were a lot of unusable photos. There were also a lot of photos that got some of the basics right and some that even captured something special. Best of all, they all represent a unique perspective – that of a child and a first-ever photographer. My Favorite of John’s photos are the portraits of Charlie playing his guitar this summer. How cool! I tried to only delete photos that were blank or completely out of focus.

Just in the last month Julia picked the camera up and did the very same thing and with very similar results. My favorite of Julia’s is her self portrait close-up of her face.

First, here are John’s Photos

John’s First Photos

Now, let’s take a look at Julia’s photos.

Julia’s First Photos

John Jack Lorenz is 5 years old today!

Our little John is not so little anymore.

Today we visited Dr. Gowda for his birthday and Doctor Gowda gave him a wonderful gift. John’s platelets are now up to 206,000!!! Woo hoo!

That’s the highest John’s platelets have ever been since he contracted ITP and the third straight week of rapidly rising platelet counts despite the fact that his steroids have been tapered back to 2.5mg every other day (he started at 15mg a day). It really looks like John may be in remission. It’s sure to be a big celebratory weekend for all these reasons. I’m including two pictures from today. The first is with Dr. Gowda. Dr. Gowda is calm, positive, knowledgeable, intelligent, and as warm as our South Florida waters. The second picture is with John’s nurse Lourdes who is the best kind of nurse – kind, thoughtful, and capable!

Went to John’s weekly Doctor visit today and lo and behold his platelets are up to 141,000. Just as last week, his platelet’s are up despite the fact that we’ve been tapering his steroid dosage down. He looks like he is on the mend for real.

Today is Michael’s 20th birthday. Happy Birthday Michael!

Aunt Jan leaves tomorrow for Cape Cod after a short stay here since Tuesday. It’s been a great visit.

Cheers

Today has been a great day all the way around.

Today is Shannon’s birthday, she’s on a rare day off from work, and we just had really good news at John’s weekly doctor’s visit.

Perhaps it was a birthday present for Shannon. As I noted on an earlier post John’s platelet levels while taking prednisone steroids have shown the strongest positive reaction out of all the treatments he’s been on. On the other hand, the steroids haven’t kept his platelet levels up any better than others. In fact, as we completed the last week of his month long prednisone course last week his levels had gone all the way from 160K down a month ago to 38K last Friday.

Dosage during the last week had gone down to 5mg a day with 2.5mg administered twice a day after breakfast and dinner. Surprisingly Dr. Gowda decided to keep John at the same dosage during this past week and Shannon and I expected to see John’s platelet levels drop even further.

John actually went back up to 47K this week even though we maintained the very low 5mg dosage. This marks a first. John’s platelet levels have never gone back up on their own or without giving higher levels of drugs. Dr. Gowda summed up our feelings perfectly “this is good news.”

We can’t predict if John’s levels will stableize, continue to climb, or go back down but this gives us the first peace of hopeful news since we’ve begun.

Happy Birthday Shannon!

Tonight, we’re off with the whole clan to Rosa Mexicano in Palm Beach Garden’s – one of Shannon’s favorites (me too!)!

We took John in for his blood test early this past Monday because he was showing physical signs of low platelets again (petechiae). Sure enough, his platelet levels had dropped to 39K. This time we moved on to steroids as a treatment – a short four day course with a high dose.

The goal was to test his platelet reaction to steroids and to get him back up above the 50K range. Steroids have the benefit of being administered as a simple pill – no hospital visit needed. The bad side is that they have some strong side effects. Moods, aggression, weight gain, etc. John’s appetite didn’t seem to change but his moods have. He’s just unhappy and grumpy – quite disagreeable at times (like this morning). But also even when he’s not being aggressive he just seems sad. Some good new then? Yes.

I just came from the doctors where John’s latest blood test showed that his platelets had rocketed up to 237K from 39K. That’s the best one-time rise we’ve seen in his results.

This doesn’t mean much however other than he responded well to steroids. Our expectation (and the doctors) is that his platelet levels will start moving down again and the question is how much and how soon. This game continues until his body heals itself or it doesn’t. We won’t get a diagnosis of chronic ITP until we’ve passed the six month mark with no permanent improvement.

The Doc started preparing us Monday to move on to another form of treatment called Rituxan. It’s a heavy duty drug used in chemotherapy and more experimentally with ITP (with good results). It does have the riskiest side effects that we’ve encountered in any of John’s past treatments. They actually administer the drug in the Intensive Care ward. This doesn’t sound so hot to Shannon and I.

The upside is that this drug has been known to actually cause a remission in ITP – something that the other drugs don’t really offer. Shannon found in her research that in Europe they don’t even treat ITP as aggressively as we’ve already done with John until platelets reach 5K! Here in the U.S. anything below 10K is grounds for hospitalization due to concern over spontaneous bleeding (at these levels it is possible to bleed to death without even having gotten so much as a bump). Once again, our experience just keeps reinforcing that modern medicine with ITP is basic trail and error. Let’s try A and see if that works. If A doesn’t work try B and so on. That’s what gives us pause in using something like Rituxan. We’re both in agreement that we need to do some much more in depth research and soul searching before we’re ready to go this route. Shannon made a good point this morning in saying that maybe we hold out (like the europeans do) for his results in six months and then cross the bridge then if we get a ‘chronic’ diagnosis.