July 24, 2006

Update # 45

Good Evening,

Some of you have received this information already, but most of you are being contacted for the first time.  We are again requesting your prayers for Jeff; since last Thursday the 20th, he received the diagnosis of Leukemia.  Secondary AML is a side effect of the Hodgkin's chemo.  This news was a total shock to us and we have since found out that the staff here at Cardinal Glennon felt the same way since Jeff did not exhibit Leukemia symptoms.  For those of you just finding out this news, let me back up.

The last update was about the low white count and the bone marrow biopsy set for August 4th.  Jeff called us the evening of 7-14 saying he did not feel well and that guys at work said he looked a little pale.  I said to take his temp when he got home that night.  His temp was near 100 degrees and since we knew his white count was low, I suggested to go to an ER.  Jeff explained his situation and the ER gave him an antibiotic.  His temp went up and down the next couple of days and he complained of a sore throat and his right jaw bothering.

Since our first stop on vacation was Jeff's place anyway, we just decided to leave a day early on the 17th.  On our drive up, he phoned that he had to call in sick to work since his temp was almost 102.  When we arrived at his apartment, his temp had risen to almost 103 -- even with the antibiotic and Tylenol.  Jeff had phoned StL during the day and we again phoned them when we arrived in Waterloo.  We all decided Jeff needed to be seen.  So early Tuesday the 18th we went to pick up Jeff for the drive to StL and found his temp was over 104.  

Jeff was admitted to Cardinal Glennon with the intention to find the source of the infection and go ahead and do the bone marrow biopsy as long as he was in town.  Every test for some infection came back negative.  They had him on 3 antibiotics and his temp still rose to 105.  The first result from the bone marrow showed the Leukemia.  Jeff did not present the normal symptoms for this and we asked about the low, not high, white count.  The doctor said this unusual low count can be found in some cases.

As I had mentioned before, Dr. Chu retires the end of July.  Dr. Karen Gauvain came to CG two months ago from Children's here in StL. Everyone loves her so far and we have been as impressed with her as we were with Dr. Chu five years ago.  So after the diagnosis on Thursday, she immediately came up with a plan of treatment and began it on Friday.

Jeff had a spinal tap on Friday to test for Leukemia cells in the spinal fluid.  Dr .Gauvain said normal chemo will not hit the cells in the fluid.  So while they had Jeff for the spinal tap, they did some "proactive" chemo into the spinal fluid.  The test later showed negative for leukemia cells in the spinal fluid.

The plan is for Jeff to remain here at Cardinal Glennon for the 10 days of chemo and then they wait  4 days (but it will be 6 due to a weekend) for another bone marrow biopsy to hope Jeff is in  Leukemia remission.  They must wait 30 days from the start of chemo to do a bone marrow transplant.  In the meantime, they'll check Jeff's frozen stem cells but they were really set aside for the Hodgkin's and probably will not be used.  They have already started the paperwork for Jeff to be in the national bone marrow registry to find a donor.  Now if at the end of those 30 days they have not found a donor match, Jeff will receive low maintainance chemo to stay in remission.  So the stay time in CG is undetermined.  Whenever the time comes for the transplant, Jeff will go to Barnes Hospital here in StL.  Dr. Gauvain wants him in an adult facility and knows the head guy over there.  The two of them already began consulting from the minute of the diagnosis. The minimum time in Barnes for the transplant is 4 weeks and could be 6 - 8 weeks.

Now the hardest part of this diagnosis was Dr. Gauvain's last comment -- that Jeff needs to be off work for 6 - 12 months.  His heart was broken!!!  He was not this upset with the Hodgkin's diagnosis since we were to keep life as normal as possible.  This time his life will be anything but normal.  Jeff's boss already began the work for the 12 week family leave.  After that time, Jeff's job cannot be held and his insurance will also have to then go to Cobra. His apartment manager is out of town for a couple of days so we still need to contact her.  We figure we'll put most of his things in a storage facility in Waterloo and bring to Hillsboro just the necessities. 

Jeff's fever, sore throat and bothering jaw, have cleared up.  Dr. Gauvain thinks there was some infection somewhere or a virus that finally worked out of his body that caused those problems.  So in a way it's good since it would have been another few weeks till Aug 4th for that bone marrow biopsy and the Leukemia would have that much more time to advance in his body.   

Jeff's road this time will be long and difficult -- harder and longer than before.  But his goal is to return to KWWL and the life he loves in Waterloo.  So we continue to request your prayers for Jeff and this process.  Your prayers already helped Jeff and they helped Ken so I'm praying they are as powerful as before.  All three of us are doing better since last Thursday.  God will be with us.  We know your love and support will continue to help us through this major detour of Jeff's adult life.  

God's love to you all,

Marcia