Happy 17th Max

Enjoy your day and I pray for many many more for you that are filled with smiles, dancing, laughter and challenges that bring your best out. Fill up your heart with life and women and love and song.

Love

Dad

Giving Thanks – Gratitude Training

Tim Ferriss, author of The 4-Hour Work Week has a useful post up about practicing a daily gratitude exercise. He makes a point that connected with me, which is that many of us can’t easily (or don’t enjoy) meditation. I’m one of those. If I relax that much I’m just going to fall asleep. 🙂

Instead Tim suggests thinking of five things you’re thankful for upon waking. Great idea. There’s a link in his post about Gratitude Theory that you may find interesting. Here are some things I’m very thankful for.

I’m thankful for Shannon, she’s my love, my true companion, my partner and my home.
I’m thankful for Max because his wit and charm remind me of my better sides.
I’m thankful for Charlie because he is innocent, bright, and warm.
I’m thankful for John because he plays in life like he means it and has a big heart burning with passion.
I’m thankful for Julia because she’s smart beyond her experience and loves me as if I have no flaws.
I’m thankful for my mum and dad because they gave me a chance to be a good man.
I’m thankful for my Aunt Pat who has listened to me when no one else could hear what I needed to say.
I’m thankful for all my family who have helped me, loved me, prayed for me and held me in their mind and heart.
I’m thankful for my friends, those few souls walking this earth who accept me for who I am.

Wow, that felt great!

Happy Birthday John – 2007

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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!

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John at 141 & Aunt Jan

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

A great day all the way around

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!)!

John’s latest tests with ITP

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.

John’s test were good today

John just got back from the Doctor and we have good news to report. The conclusive bone marrow tests confirmed that John does not have Leukemia. There are no other blood disorders that the more wide ranging blood tests turned up either. So that leaves us with last week’s diagnosed Helicobacter pylori and ITP. Our next blood test to check platelet levels is two weeks from today. His platelet count rose to 175,000 today, well into the normal range of 150,000 to 450,000. This is a great response to the IVIG immunoglobulin treatment from last week. By the time we go back to the Doctor John will be done with the three-course, 14-day antibiotic cocktail he is on right now for Helicobacter. Hopefully his platelets will be higher then.

John ITP Update

John has been doing pretty well after being released from hospital on Wednesday after one IVIG immunoglobulin treatment. His platelet levels rose to 52K Wednesday which was a similar reaction to his first IVIG treatment when our whole ITP saga began. For now it is back to coaching John in quiet play. Lots of movies. Too bad John is a bit young for spending lots of time on the computer like his parents. Nah, not really.

I learned two new items of note that I have not reported previously. One is that the final and conclusive bone marrow results won’t be known until next Wednesday when we return for a Doctor’s visit. The initial results that I reported are preliminary and based on a physical examination by our specialist under microscope. This test indicates that John does not have Leukemia but not conclusively. The Laboratory bone marrow results will do that for us. So that big sigh of relief is still with us – but the overall specter of something else like Leukemia being wrong with him is still there.

Next we learned that john has Heliobacter Pylori – a bacteria that lives in the stomach. This is seen in a pretty large percentage of the overall population and is the bacteria that causes ulcers, gastritis and something called duodenitis. It is also seen in patients with ITP. Speaking of ITP, treating Heliobacter with the trifecta of antibiotics that we’ve been prescribed is how it is killed off. Most of the time this combination of three different antibiotics administered over 14 days is successful, although there are already strains that have mutated that do not respond to the same treatment. Of particular interest to us is that patients with ITP have been known to return to normal platelet levels after their heliobacter has been treated.

All this leaves Shannon and I with a clear picture of one thing. The medicine we are dealing with contains as much of the unknown as anything. There are diseases that are really well worked out and ones where there appears to be more mystery and I think what John is experiencing is like that. We don’t really know for sure yet that he has ITP even though that is the operating assumption. The additional blood tests and bone marrow test they are doing are being tested for more even rarer diseases. That’s how the heliobacter was caught. There are additional test results that we will learn of when we return to the Doctors next Wednesday. Until then, you know what we know.

John does not have Leukemia!

Great news – John does not have Leukemia! We got his test results back this afternoon and we were elated. We are now getting checked into the children’s hospital where John will receive the same IGV gamma globulin treatment that he received last time for ITP. Then he will stay overnight again and tomorrow morning we will see where his platelet counts are. If they respond really well John will go home tomorrow and if not he will get another treatment and stay another night.

The anesthesia for John’s Bone Marrow procedure went smoothly today and John woke up groggy but fine. He was eating his lunch within 1/2 an hour after waking up and is in good spirits now.

Now I’m so happy to be on to trivial easy things for the remainder of the day!

It’s Charlie’s 12th birthday today so I can take him and get him the jeans he wants so badly. I can pick up some movies to watch in the hospital. John has become transfixed with Bionicles (lego robots) and I will pick him up some to play with in his bed. In fact, John kept shooing me out of the hospital long before I had learned of the good results insisting that it was OK for me to go get his Bionicles NOW. 🙂

They will be running some additional blood tests this time to see if there are any unusual blood disorders he may have that are not ITP. We get results for that back tomorrow. It remains most likely that he has ITP.

Cheers and thanks for your thoughts and prayers

The Latest with John and ITP

We went to John’s Doctor today for his weekly blood test. Last week John’s platelets had gone down to 84K which got us worried. BUT Dr. G said that this is normal with acute ITP. We got results back today that John’s platelet count was down to 29K.

At this point the Doctors want John to have further treatment which will either take the same form as last time in hospital OR we may use steroids. Before that though the Doctors want to do a blood marrow test to completely rule out leukemia. Given that John’s other blood factors indicate normal ranges it is extremely unlikely that John has leukemia but they still want to rule it out. Since steroids can mask leukemia it is also important to do the bone marrow test before administering them.

Tomorrow morning we will go to an outpatient ward attached to the same hospital we went before. From there they will knock John out for the bone marrow procedure. The procedure is short and he won’t feel anything since he’ll be under. He will not be out a long time. From there we will know the results and we are praying for ITP!

As long as the diagnosis remains ITP we will move on to treatment for ITP using either his former treatment via IV or the steroids which are administered orally. If we use steroids he may be able to go home the same day. If we use the previous treatment we’ll transfer over to the kids hospital where he’ll get his treatment via IV again. This will necessitate the same overnight, or two night stay.

We’ll keep you up to date.

Julian and Shannon