Entries Tagged 'John' ↓

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 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.

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

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

John (Son #3) got photographed by the local paper at his playgroup yesterday. Full story and pics on CLB.

Palm Beach Post Thumbnail

Here’s a short podcast on the latest from ’round here.

The church bells rang out at 10 this morning at St. Ann’s Catholic School.  Julia, John and I are at our new park (Jose Marti Park) on the Intracoastal, which is adjacent to St. Ann’s. We’re moved from Welly World, we’re far from unpacked but today feels like it could be a regular day and that feels like a good thing.

Today, we’ll watch The Open on TNT, we’ll unpack a skosh and we’ll whip up a killah web site for Rob’s hurricane window business. At least, I’ll move it along to the next level. The winds are up today at the Beach and the prevailing wind is uncharacteristically cool. Sitting outside without benefit of a shade tree at this time of year is akin to suicide but today it’s NOT. It’s lovely.

Mum and Neil have shuffled off to Copenhagen and left behind them a wake of Muesli and Tea. The house is different without them of course and we will miss them both. It was a nice visit and I’m so glad that all my kids and Shannon got a chance to be around them and vice versa. I’ll upload some pics from the visit shortly but for now time is too short for photo editing and the like. What are some of the highlights? Watching the Space Shuttle launch from Cape Canaveral on July 4th as we cooked hot dogs on the bar-b-q. That one we’re sure to remember.