Big Jay update.....Please pray big time now......

Jay Update: (and it looks like some things got pushed forward a little now.....)

Feb. 16th, '05 evening:

Today started out with the usual. Try to get Jay awake, cover his central line with a plastic bag so that he can take a shower, tell him every 5 minutes for a ½ hour that he one has 5 more minutes and he has to get out of the shower, gather our clothes for the day, and then spend 40 minutes convincing him that he needs to stop watching TV and start the process of getting fully dress. Follow that up with 5-7 trips back up the stairs to retrieve items that we forgot but remember just before we're leaving the driveway. His hat, pillow, and glasses rank as the top three most forgotten items (I'm not much of a morning person, I'm lucky I remember my head). :-)

We get to medical short stay and we wait in the waiting room for 15 minutes. After the fifteen minutes, we call the number on the sign that says "if you have waited more than 15 minutes, please call this number". Every time the person on the other end of that number says "someone will be with you, why are you calling this number? Every time, I respond we'll there's a sign here that says to call this number after you have here fifteen minutes and we have been in here more than fifteen minutes." Every time I'm met with the same awkward silence and the tone changes to a very inviting "we'll be right out".

By this point in the day, I feel like I'm in the movie Groundhog's Day. Same old, same old.
I only shared this because this is the first time I realized what a routine this has become. Almost eerie.

Tuesday night, I was on my way back from work when my mom called to tell me Jay was running a fever. When I got home his fever was 101.4, later that night it was 102.4. At 10:30, I called his Doctor and he said to give him Levaquin and Tylenol and call back if anything changes. Nothing really changed. Even though he had a fever he said all in all he was feeling pretty good.

Today, at short stay they decided not to do his LP. We got to short stay at 10:00 and we didn't see the Doctor until 4:30. When he arrived he gave us some new news.
They cancelled the LP for today but rescheduled it for Friday. They also are going to do a bone marrow biopsy on Friday. The Doctor said that it might be possible that the first round of chemo this time actually put him in remission. His low platelet count is a little disturbing but if the cancer is effecting the platelet then it should be seen in the bone marrow. If there is no evidence of cancer in the bone marrow we may jump straight to the transplant. This concerned me at first and I asked him "why would we risk skipping the chemo cycles since they were so important last time". He said that since when he was treating Jay intrathecally with Deposite (this is the drug that cause the arachnoiditis) the cancer still came back, he is afraid that cancer is starting to become chemo resistant.

I also asked how can we rely on the biopsy when it came back negative on Dec 13th and 2 weeks later the cancer put him in ICU. He stated that he went back and examined the slides himself and stated that he found a marker that can be normal in some people but it may have been evidence of the cancer. He said if that marker is present (even though normally it is still considered a negative result) he will consider the cancer to still be present and Jay must be in remission (no sign of cancer) in order to proceed with the transplant.

He said he wants to do a bone marrow transplant but in the bone marrow abatement phase he wants hit him EXTREMELY hard. This time he wants to do full body radiation plus intensive intracranial radiation coupled with intense chemo. He said he strongly believes that this is our best shot. He said also that even after the transplant Jay will still have to have methotrexate in his CNS regularly. He said that since they found concrete evidence of the cancer (not just clinical evidence) in the CNS that he feels comfortable putting in an Omaya reservoir port in his head to keep him from having to have so many LPs.

Dr. Lister contacted Jay's transplant coordinator already and she is working on getting insurance approval. We will know more about the schedule after the coordinator sets everything up and the biopsy is back. If cancer is found in the biopsy then he will have at least one more course of chemo.


It has been quite an emotional day. We are filled with hope on the main front but we also understand that this is the final battle. It is really scary for both of us. I took him out for dinner tonight and had my business meeting at the same time. This worked out well since Jay is not really able to talk much. When we got home he had himself so worked up I have him an ativan and helped him change into his soft PJs. He's doing better now but the stress of today's news is pretty intense for him.

On the way home, I notified his brother that they maybe moving forward sooner than expected and to get ready for the phone call any day since he is the bone marrow donor. DG is eagerly waiting. He is truly a great brother to Jay and a not so bad brother-in-law either (I would get more mushy but he'll be reading this and I don't want to inflate that ego any more that it is - Tiffany his wife would strangle me) :-)

Well, I have some projects to work on so I have to go.

I hope all is well with each and everyone one of you.

Sheila

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The only other news I would like for everyone to consider is to stop by our church's forum. It is a really great place for Christians and non-Christians alike to talk about the
bible, movies, music, books, etc.... It is just a cool place for community on the net...and I would love for every single one of you to register and join in the discussion...the link is below:

St. John's Forum

@ the very top right is a link to register and please just fill that out and give your self a different name if you want....and join in the discussion. Thanks! and hope to see you al there.

Thank you all so much for your prayers and I can not tell you all how much I love and appreciate your prayers for Jay and Sheila........KUTPs!!!!!!!!!!

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