Wednesday, March 14, 2007 - noon

Shaylor received a call today from the transplant team.  He is scheduled to begin the transplant process on April 3, 2007.  This will begin the 10 day preparation for the actual transplant which will occur on April 13, 2007. 

He will go back to Houston on Monday, 3/19 for appointments with Dr. Couriel (transplant) and Dr. Koller (leukemia).  He anticipates staying in Houston  that week for the staging (complete set of scans and battery of tests) prior to the transplant.

He is hopeful that he will get a free pass to be home between 3/24 and April 2 when he will return to Houston to start the transplant.

Shaylor feels reasonably well this week, but still tires easily.  Today he felt well enough to venture to Fossil Rim Wildlife park with his family.

Please continue to pray for Shaylor and the anonymous donor as they  prepare for the transplant. 

For those of you in the Whitney area, Burgers and Such will be having a Carter blood drive for Shaylor on Saturday, March 24.  

Syndi

Friday, March 9, 2007 - 10:00 a.m.

Much has progressed since my last update.  On Friday last week, as I was preparing to drive back to Whitney, and making arrangements for the changing of the guard with Mom and Dad, Shaylor began to analyze the situation and determined that what made the most sense was for him to just load up and come home with me.  He was feeling well especially when compared to the same point in the previous two chemo treatments.  It just didn't seem to make sense for everyone to drive to Houston to see him when I was headed home anyway.  So, he elected to make an executive decision, without medical approval, that he would go home for the weekend, and take his chances on risks associated with declining blood counts. 

He had a great weekend at home.  The kids were totally excited!!.  He was able to make it back to Whitney on Sunday morning and attend church.  Jeanne and the kids went back to Hurst on Sunday afternoon, and Shaylor stayed at Mom and Dad's Sunday night.

Shaylor and I returned to Houston bright and early on Monday morning for his lab work and appointment with Dr. Koller.  His white counts were low ( I believe .4) and Koller would not even discuss when he would be able to go home.  We did not confess about his weekend escapade!!! But the good news is, he was blessed with a great time at home and no harm done. 

Over the weekend and on Monday, Shaylor's heart would race with minimal exertion.  When we discussed this with the doctor, and based on his counts, they determined that he was once again dehydrated.  So he got backpack fluids for 72 hours which means a daily trip to the clinic for a new bag of water to tote around. 

On Tuesday evening, he ran a very low grade fever and had new pain in his lower back.  After talking to the doctor, Shaylor monitored his temperature during the evening and night, and planned to have labs drawn again on Wednesday morning.  The blood work revealed that his white cell count was improving (which could be the cause of the back pain), but his hemoglobin and magnesium were low.  So, at our 3:30 pm appointment, they ordered a unit of blood.  After several hours of waiting (we wondered if they were waiting for someone to donate a unit) we finally were free to go a little after 9:00 p.m.!!!!  What a way to spend your birthday - Shaylor's 37th!!

We ran into a couple of guys in the lab one day that said they had figured out what the "MD" in MD Anderson stood for......."most of the day" Anderson!!!.  Which is inevitably true, but they are good, and in this case, good is worth the wait!!!

On Thursday, he had more lab work and a trip back to the clinic for his last chemo injection of round 3 and to be freed from his backpack of fluids.   While he received chemo, I went to the leukemia clinic and spoke with the PA about the results and the chances of getting a pass to go home.  They had originally indicated that we could possibly go for the weekend, but would need to come back on Monday.  Once the doctor and PA looked at the results, Shaylor received a belated birthday present.  They gave him a pass to go home until we have to back for appointments with the Leukemia and Transplant teams on Monday 3/19.  Of course, this is conditional upon having labs done in Arlington while he is at home.....but that is easy!!

So, while his veins sucked in the last of the bag of fluids, I flew back to the apartment and packed up for us to be gone for 10 days!!. 

Shaylor is still at risk of some chemo complications including high blood sugar (from the most recent round of steroids), low platelets, dehyrdration etc.  But we will monitor these closely and he promises to drink gallons of water!!!!!

Please pray that he has a fantastic time at home with the kids.  This is Ash's Spring Break so should be a great week for him to be home with his family.

We hope to receive more information on the status of the transplant at his appointment on Monday 3/19.

Thanks again to all of you who so continually support  us in your thoughts and prayers and in so many other ways!!

Syndi

PS -and he has managed to gain some of his weight back - about 14-16 lbs..... unfortunately, I am finding some right along with him!!!!!

Thursday, March 1, 2007 - 11:00 p.m.

Shaylor was dismissed to the Houston apartment on Tuesday.  On Wednesday, he saw Dr. Couriel - the transplant doctor.  The unfortunate news is that he has only 2 perfect matches (matched 10 out of 10 markers,  not 10 perfect matches).  However, we feel fortunate to have these 2 matches.

Shaylor is scheduled for a PT scan on Monday, 3/5/07 which we hope will confirm that his disease is in remission.  The transplant team will spend the next week or two contacting the two matched donors to determine scheduling, etc.

The current plan is to begin the transplant countdown (assuming the disease is in remission, and that the donors are available) in the first or second week of April.  We are still reading the 180 page manual on the transplant process!!.  He will be hospitalized for approximately 10 days prior to the cell infusion, and then an additional 30 /- days following the transplant.  The first 100 days following the transplant are typically the most risky.

This week has been a good week in comparison to previous weeks following chemo treatments.  He has been a bit tired and weak, but not severe.  We are hopeful that this will be the last chemo treatment required, and that perhaps he can spend a couple of weeks at home in Hurst prior to starting the transplant.

Syndi

Monday, February 26, 2007 - 6:00 p.m.

We returned to Houston last Thursday, Feb. 22, 2007 and had an appointment with Dr. Koller.  Shaylor was feeling significantly better  - "about 50% of what I was before they tried to kill me" was his statement. 

He was readmitted on Thursday and started chemo late that evening.  He is still doing well.  He has rested a bit today, but has been able to eat well and walk around the floor several times at a very good pace. 

Unfortunately, billing policy will not allow us to see the transplant doctor in the clinic while Shaylor is inpatient.  They have postponed our appointment and we are trying to get on the schedule for Wednesday. 

We currently anticipate being dismissed to the apartment on Tuesday. 

Briefly, I want to take this opportunity to express thanks for our overwhelming support system. 

 Last Tuesday was a trying day as Johnny was sent home from school running a fever and was sick at his stomach.  There was a need to get Shaylor relocated to Whitney quickly to limit his exposure.  Both grandfathers, John and John, immediately hopped to action and met in the middle between Hurst and Whitney.    Later that day, David and I had been in Fort Worth running errands and had started home  when my Suburban croaked.  We were stranded north of Burleson and had no clue where to have the truck towed.  I called a friend of ours, Billy, who lives in the area.  He located a shop for us next door to a shop owned by a friend of his and met us there with a key to put it behind the fence at the shop.  But we needed a way back to Whitney.  We called David's parents who immediately jumped in the car, picked us up at the auto shop, and took us to Hurst to pick up Shaylor's truck. 

It was only after the fact that I realized how blessed we are!!  I was at first bummed about my truck breaking down, but then realized if it had not happened then, when David was with me, it probably would have happened on the way to Houston!!  And, it is so great to know that we have so many people that will "drop everything" to come to our aid.  Also, my truck was repaired for just a little over $100 - we were expecting a  much larger bill.

We are truly blessed!!

Syndi

Friday, February 16, 2007 - 7:00 a.m.

Shaylor received GREAT news on Thursday.  He received a call from the transplant coordinator at MD Anderson telling him that of the possible matches, they have received additional blood samples back from 10 potential donors who are PERFECT MATCHES!!.  It was a "goose bumps" moment for us!!  Prayers have been answered, and we thank you for continuing to intercede on behalf of Shaylor and his family.  Please continue to pray for us, and these 10 potential donors.

In addition we saw Dr. DiStefano at the Arlington Cancer Center on Thursday.  Although we anticipate that all of the chemo, and of course the BMT,  will occur in Houston, Shaylor needs a doctor for routine labs and acute care  while he is at home in Hurst.  Dr. DiStefano understood this need, and offered that he and his clinic can offer whatever services we need while still receiving the majority of treatments at MDA.

Shaylor is still very weak, and tires easily.  In addition, he still has a bit of chest congestion but nothing that the doctors seem to be especially concerned about. 

We are scheduled to return to Houston on Thursday 2/22 to see Dr. Koller, the leukemia doctor.  Prior to this point, Dr. Koller has not been willing to discuss the BMT because a donor had not been located.  However, we anticipate a serious conversation with Dr. Koller regarding when we can begin the BMT process.  Shaylor has an appointment with the transplant team on Monday, 2/26 but he must have additional scans (PET scan, MRI, etc) before this appointment.  We hope to accomplish this on Friday 2/23 and Monday morning 2/26. 

Currently, Shaylor is scheduled to begin his next round of chemo on Thursday 2/22, but if being inpatient receiving chemo will delay the scans and appointment with the BMT group, we will try to push chemo until we have more definitive answers from the transplant team.

Stay tuned for further updates, and keep the prayers flowing.  We are so blessed to have such a wonderful support system of family and friends.

Syndi

Tuesday, February 13, 2007 - 7:00 a.m.

Yea, Yea.  Shaylor had lab work and a chest x-ray early Monday morning followed by a brief appointment with Dr. Koller.  All of his blood counts are either at, or returning to, normal ranges.  His bilirubin counts are still high, but he is not glowing nearly as much as he was last week. 

Dr. Koller gave Shaylor a 1 week pass to be at home in Hurst.  We arrived back in the metroplex around 5:00 p.m. on Monday.  

Shaylor is still very weak, but we are hopeful that being at home will help him rebuild his strength quickly. 

On Thursday, he will see a doctor at the Arlington Cancer Center.  We are hopeful that this doctor can assist with Shaylor's care during the times that he is able to be in Hurst. 

Shaylor has vowed to eat well and stay hydrated so that he doesn't have set backs that send him back to Houston before his next scheduled appointment next Thursday, 2/22/06.  Dr. Koller has stated that he wants to see Shaylor "robust" again before he begins the next round of chemo which is planned to begin next Thursday.

The next appointment with the transplant group is scheduled for Monday, 2/26.  So, hopefully, we will have an update on the BMT process soon.

There is a possibility that the National Bone Marrow Registry will schedule a "private" drive for those that have expressed an interest.  I should be talking with them in the next couple of days.  We only need 10 people who will confirm a willingness to register to set up a private registry drive.  If you live in the D/FW area and would like to become part of the National Registry, please send an email to me at shillberry@valornet.com.  If we have a sufficient response, I will try to get something scheduled.  Also, if anyone knows of a church or other facility that would allow us to hold the drive, please let me know.

Thanks for your thoughts and prayers as he continues to fight the fight. 

Syndi

Thursday, February 8, 2007 - 2:15 p.m.

Shaylor was dismissed from the hospital on Tuesday evening.  On Wednesday, Dr. Koller called to tell us that Shaylor has influenza. 

We saw Dr. Koller again today.  Shaylor’s blood counts are all good now, and his liver counts are improving, although not back to normal.  We believe that he is on the downhill side of the flu, but only time will tell.

On Tuesday, he developed a rash and then had a slight allergic reaction (which responded to Benadryl) during an in-home IV anti-fungal infusion on Wednesday.

Dr. Koller thinks the rash may be a reaction to the most recent antibiotic prescribed and/or the anti-fungal.  For now, the doc has discontinued all medications except routine acid reducer, anti-nausea if needed, and some mineral supplements until his eating returns to normal. 

He is doing better with eating and says his appetite is improving.

Now for the really great (and totally unexpected) news.  If all goes well over the weekend, he is scheduled for blood work and a chest x-ray on Monday.  If all the counts are continuing to improve and there are no set backs over the weekend, Koller has agreed to give us a pass back to our homes in the metroplex until the following Monday, 2/19/06 at which point we will discuss beginning the next round of chemo. 

He is trying really hard to eat and get up and around as much as possible.  He was able to walk into the clinic today and actually walked all the way to the car in the clinic garage when it was time to leave. 

So, continued prayers for healing, a very good weekend, and great lab results on Monday!!!

Syndi

Friday, February 2, 2007 – 12:45 p.m.

Shaylor is still in the hospital.  They have diagnosed early stage pneumonia which was predicted to worsen as the white counts rise – which hasn’t happened yet.  The infectious disease group is still concerned that there may be another source of infection and have ordered a sinus CT for this afternoon. 

This morning was a very good morning for Shaylor.  He walked around the nurses’ station twice and then sat in the chair before, during and after breakfast.    He seemed to have a decent amount of energy this morning.

His white count is still very low at 0.2 (doubled from yesterday – yippee) and his platelets were low today.  So, he is resting well following a bag of Benadryl and a platelet infusion.

We have rented an apartment in Houston under a 6 month lease.  It is in the same complex as the temporary apartment we have had for the last month.  Ann, JD, Leland, Brandon and Zachary are on their way to Houston with a trailer of furnishings for the new apartment.

The doc is saying dismissal is possible as early as tomorrow, but we are going to be vocal that we really want to be sure he is “stable” before we leave again.  No one wants to go back through the ER and protective environment (PE) room process again which is what might happen if we dismiss too early.

As a matter of explanation, the PE rooms are very “sterile”.  Everything is filtered – air, water, etc.  There is no toilet or shower, but rather a potty chair and a community shower room (with filtered water).  These rooms are needed for the patients whose risk of infection is significant and for those who are preparing for BMT.  No one likes to be in one of the PE rooms so that is where they always seem to have room availability for patients who come in through the ER. 

Syndi

 Tuesday, January 30, 2007 7:30 p.m.

I finally feel like I am back amongst the world of the living today.  I was admitted to the hospital on Sunday after a poor weekend in Houston.  I currently have pneumonia but am  being treated with IV antibiotics and felt good enough today to get up and take a shower.  Hopefully I will maintain this rate and be released from the hosptial by weeks end.  I spoke with my oncologist today and basically he said he used too big of a gun for the first couple of treatments.  This has resulted in  very low blood cell counts which have required the use of blood transfusions for platelets and red cells, and a very low white cell count which is the likely cause for the pneumonia.  My other medical issue is a high bilirubin count which is an indicator of liver issues, this again is caused by the chemo and is to be expected with my being hit too hard.  Hopefully for the next few days I will be able to check and reply to e-mails again.  My current room number at MD Anderson is 713-834-9266. (although we hope this changes on Wednesday).  Please feel free to call with any questions, if the number changes I will try to send an update to it.   Oh and I finally found both a sucessful weight loss and tobacoo cessation program, no tobaco since 12/29, and current weght is 240 pounds.               Thanks,  Shaylor

Monday, January 22, 2007 – 10:20 p.m.

After several days in the hospital in which Shaylor’s blood glucose levels and heart rate were monitored regularly while he completed the initial stage of chemo round 2, he was discharged today.

We believe the diabetes is steroid induced, and are hopeful that all will return to normal once the steroids are gone.  However, the down side is that the steroids will have to be started again on Feb. 2. and we came home equipped with 3 types of insulin and all of the equipment to track glucose levels.

The doctors also believe that the low heart rate is a factor of some of the medications, or this particular combination of drugs.  Even though this seems very low, the doctors were never especially concerned about it.

Unfortunately, Shaylor fell last night when getting up to use the restroom and pulled his central line completely out.  So, he must go back to the clinic on Tuesday for the insertion of a new line.

Wednesday is scheduled to be a “freebie” day.  Thursday we will have blood work, meet with the diabetes clinic and see Dr. Koller again.  On Friday, he is scheduled for additional blood work, the final spinal injection and the day 8 round of outpatient chemo.

 He is at the point that a decision must be made regarding continuing treatment in Houston vs. returning to the metroplex for follow up care for this round, and complete administration of future rounds.  We are gathering facts and information this week, and hope to make a decision by this weekend – early next week at the latest. 

Syndi