April's follow ups

On Friday April 27, we followed up with another treatment with Oncology for treatment 7 of the IVIG. At treatment 6 our nurse drew some labs and checked them. Prior to treatment Jeff’s IgG level (normal 400-700) was 315. On March 30 the level was up to 939. Dr. H is happy with those and told us that we didn’t have to do anymore.  I am SO glad. Because the last CT scan (in January) was good, he has to have a repeat of CT for follow in July and then see the doctor. No blood work or treatments until the CT scan! Whoo Hoo!! Now we get to remove the Power Port and return to normal! Hopefully no more need for treatments from there for a very long time.

An April 16, he had a follow up with infectious disease. Unfortunately, things were not as well as we had hoped there. His cryptococcal titer was still 512- the same as January. We were hoping for a result in the double digits. So, he has increased his meds with that and we will do a titer again the beginning of June. Because he is doing well otherwise and feeling good we don’t have to actually see her until SEPTEMBER! We will do follow up after the blood work via the phone.

So, blood work for the titer in June, blood work to follow with his liver functions because of the meds every other month (we’ve just been doing that with oncology with the IVIG for the last few months and everything is fine.), a CT scan in July and then a follow up apt in July and September.  Things are looking good!

Of course, there are always other things going on around here though with the 4 kids.

Faith has her first Communion on Saturday May 5 and Clinton has Confirmation on Sunday May 13. Please keep both of them in your prayers as they make these important Sacraments. 

Thanks to all of you for all of your prayers through our difficult 2011.

Elizabeth and Jeff.

A very belated update on things.

Hello all. (first off I apologize, I started this about 3 weeks ago and never finished it.)

After talking to different people in the past 2 weeks I’ve realized that I have been very bad at updates on Jeff’s health and for that, I apologize. I had been promising myself for months that I was going to record Jeff’s journey with cryptococcal on the blog but I haven’t done it. It isn’t pretty and I’m not sure I want to revisit it this far out. Again, I apologize.  So, this posting will pretty much just bring everyone up to date to this point and all that has passed before will stay in the past where it belongs. And with any luck- we’ll never have to revisit that aspect of his journey again.

December was very busy with visiting nurses,  doctor apts, blood work, immune-boosting treatments and in between, trying to get ready for Christmas.  As December passed and January arrived, things finally started to slow down on all fronts. The blood draws changed from 3 times a week to weekly to every 2 weeks and finally now only monthly. The doctor appointments have spread out to 3 months between visits for just about everyone.

In January Jeff had a CT scan which shows the CLL remains in remission. Because of the crypto infection, he is receiving the IVIG that we started the beginning of November. His oncologist would rather err on the side of caution. He has had 3 treatments so far and will have at least a total of 7. Those occur every 4 weeks. They did draw levels when he was there the beginning of Jan, but they take a little longer to come back and we haven’t gotten those results yet. I’m sure they are better than they were in October before we started the process but because the doctor wants to continue the IVIG no matter how good they are, the results really don’t matter. I think the next time they will be checked is after 6 treatments. We don’t officially see the oncologist until the end of April during treatment #7 to know what the plan is after that.

We do know that the retuxin Jeff was going to get through Jan and Feb to help keep remission a few years longer has been canceled because of the cryptococcal.  That was an optional treatment for him, not a necessary one so we don’t feel like there will be problems from not having it.

Now, as far as the cryptococcal—Things with that are SO much better.  As a matter of fact, Jeff says he feels back to normal.  We last saw the infectious disease doctor around the 20 of January. She is SO pleased with  his recovery. She has hinted that everything has gone textbook as far as his recovery (my words, not hers.)  She did say that things could not have gone any better than they did.  He had a few blips in the treatment as far as his blood work showing the drugs were affecting first his kidneys and then his liver. But, all that has settled down and he was able to finish treatment. Now his oral medications have been decreased and we don’t see her again until the middle of April. At this point we aren’t sure how long Jeff will have to stay on a maintenance dose of the drug. Could be a year, could be 2 years or could be forever. The dosage could end up decreasing again, we just aren’t sure at this point.

To check how affective things are, he has had blood work and a lumbar puncture to check the titration of the cryptococcal still in his body. When we had the first set drawn after he was discharged from the hospital the result was greater than 4096. (The lab doesn’t routinely test any higher than that amount which is equal to 13 times out). The last time he had some drawn (mid Jan) it was down to 512 (= to 10 times out.) He goes back again in March to see how low we can get it. We’d like to get it down to 0 but the doctor said she’ll be happy to get it down to a 1 or 2.

Jeff has made comments to people in the past week or so saying how he thinks he feels better now than he did even before he started the chemo a year ago. So, things really are at a good place right now.

I hope that all is going well for each of you and thank you again for the love and prayers that you’ve given us through 2011.