This page was last modified on Wednesday, March 24, 2010 07:39:07 AM
IT'S A PARTY!
In April, Shaylor will celebrate his 3rd birthday and the third anniversary of his bone marrow transplant.
He has planned his 3rd Birthday Party for Saturday, April 17 at 5:00 pm at Joe's Pizza and Pasta located in South Fort Worth off of South I-35 and Sycamore School Road. Please plan to join him as he celebrates!
If you have any questions, please contact Shaylor at shaylorgorrell@yahoo.com or Syndi at shillberry@valornet.com
We hope to see you there!
October 21, 2009
Just a quick update.
I have just returned home from my 2.5 year checkup at MD
Anderson. All is going well, PET scan showed no metabolic
activity. Blood work looked pretty good with the exception of some
slightly elevated kidney function results. This is likely due to some dehydration,
and is not uncommon. We have seen these numbers fluctuate since the
transplant in 2007. Blood counts, electrolytes, and liver function were
good.
I was chastised by the PA, because my follow-up on general health
matters at home with my personal physicians have not been taken care of.
Particularly, follow up for thyroid monitoring and ophthalmic and dental
follow-up. As a result I have made appointments for blood monitoring and
a routine physical as well as a dental appointment on the way home (actually
Jeanne made the appointments).
Thanks for your thoughts and prayers, Shaylor
Thursday
May 21, 2009
After talking with one of my cousins the other night I
decided to post an update to the website.
He called to ask how I had been doing since I had not updated the
website in over a year.
We celebrated my 2nd new birthday on 4/11/09 at El Rancho Grande
in Fort Worth. Brent, my bone marrow donor from upstate New York was able to
come down and meet everyone. We had a
very enjoyable visit. I will try to post
some pictures to the website from the party.
Brent and deuce (Leland Jr.) went out on the town following the b-day
party for some adult entertainment, I elected to stay at home and not hamper
the party for the younger guys.
We are all doing quite well.
I am almost back up to my pre-transplant weight, which by the way is not
a good thing. I should have stopped
eating the chicken fried steak and biscuits and gravy at about 250 pounds.
Jeanne and I celebrated our 15 year anniversary in Las Vegas in March with
my sister/caregiver Syndi and her husband David, and to think just 2 ½ years
ago we thought we may not get to celebrate another one. Thankfully I think the experience has made
our marriage even stronger than it was before (and there were no complaints
then.)
The kids are doing great in school and are growing at an
unbelievable rate. Ashlynn is 10 and is
very interested in dance. John will turn
7 in the middle of June and enjoys football and gymnastics. We plan to be on a 7 day Western
Caribbean vacation for his birthday.
My last doctor’s appointment was on 4/24/09. The results of the bone marrow aspiration were
good. Blood testing revealed a slight
elevation in TSH (thyroid
stimulating hormone); this indicates that the thyroid is not working quite as
well as it should be. The doctor
prescribed synthroid and I have actually had more energy since I started taking
the supplement in late April. A PET scan
was not performed as the Dr. did not feel that it added any value. I think looking at my increased girth gives
him confidence that I am doing well.
Thanks for the thoughts and prayers, both today and in the
past,
Shaylor
Saturday, March 21, 2009
Hello everyone-
Just wanted to extend an invite to you all to come and celebrate Shaylor's 2nd new Bday with us. It will be on Sat April 11th from 5- 8:00pm at El Rancho Grande (upstairs room) at 1400 N. Main St, Ft. Worth. We are bringing Brent (donor) in from NY for it as well.
Hope to see you all there!
Love,
Jeanne
Tuesday, April 08, 2008
Time for another update.
I have continued to do very well since my last post all the way back in January, now that I look at the website.
I am back to near full activity levels, have gained weight, and am feeling very good. I have another Drs appointment on 4/16/08 and hope to continue to receive good news.
I have even managed to go fishing a couple of times in the last month, which would not have been possible as recently as January.
The family is doing well and we have planned a trip to Disney World at the end of April, kind of a makeup for last year.
We are having a celebration party for 1 year post transplant on Sunday, April 20 from at Shady Oak BBQ, Ft. Worth off I-35 W and Western Center. It is come and go as you please and we will provide food and drink. Come on out and celebrate my new birthday with some good food.
Thanks to everyone for your support and prayers - hope to see you on the 20th.
Thanks, Shaylor
Tuesday, January 15, 2008
Well it's past time for another update. I have continued to do well since the last update. I went to my Oncologist in Houston on Monday 1/14/08 and 1/15/08 and had a good checkup. We had a PET scan performed that was negative for malignancy but did show some signs of pneumonia. I am following up with my doctor here in Arlington for a chest CT to confirm or deny the pneumonia. In any case I will take pneumonia over cancer any day.
My blood counts have continued to improve. White cells are now in the normal ranges. Hemoglobin is still a bit low but well within guidelines for this stage in the process. My platelets are at 134K which is within 6K of normal range of 140-400K. Kidneys are still complaining a little with high creatinine values, but they are improving with time and should continue to improve.
The transplant doctor is very happy with my progress and is going to start to taper me off of the anti-rejection medication starting in the next week or so. If all goes well and GVHD does not pop up I should be off of the anti-rejection medication within two months. From what I have read, this is a big benefit to how you feel and stamina levels, although I don't feel like I have much to complain about at this point.
We moved to a new address in December and spent Christmas in our new house in Keller. A new house for a new start on life. I am still planning on having a birthday party on or around 4/13/08 to celebrate a year past transplant. I will be going back to Houston for another PET scan and bone marrow biopsy in the middle of April and hopefully this will be a celebration of one year cancer free as well as one year post transplant. I am hoping that my donor will be available to attend as a guest of honor. I will keep the website updated on a possible date and time for the party.
Until next time - Live well and happy.
As always thanks for your thoughts and prayers.
Shaylor
Friday, November 16, 2007
Well it's time for another update. I have continued to do well since the last update. I went to my Oncologist in Houston on Monday 11/12/07 and had a good checkup. The Dr. indicated that my blood work had stabilized in his opinion and that I could scale back on my appointments for blood work and Doctor visits. My next appointment in Houston will be in January 2008, provided we have no difficulties between now and then. I will have to get blood work every two weeks here in town and have a doctors visit once/month in town.
At the January appointment we will do another PET scan to confirm that the disease is still not present, if this turns out to be the case then they will start to taper me off of the anti-rejection medicine at that time. Other than staying healthy and infection/disease free this is the next big step in the recovery process.
We are hoping to have a remission party in January 2008 after all of the holiday parties are over and I get my PET results. I will include more information as we get closer to the actual date. I will likely not write again until around Christmas or New years so I hope you all have a very happy Thanksgiving and Christmas. Thanks to the Doctors and prayers it looks like I will get to celebrate them this year and hopefully for years to come.
As always thanks for your thoughts and prayers.
Shaylor
Friday, October 26, 2007 -
Well it's past time for another update. Looking back, the last time I wrote an update was in early September. I'm kind of surprised that mother has not gotten on to me yet about that. I have been doing quite well since the last update with just a few hiccups along the way. I have not been feeling great the last couple of days in the mornings and at night, but we have just about decided that this is due to over exertion this past weekend. Jeanne, Ashlynn, John, and I all went to Sea World in San Antonio. I believe all of the walking and hot sunshine probably did a number on me that I had not realized. But it sure was nice to feel like Dad again. I am feeling better this evening after a couple of days off from work for rest. I went to my Oncologist in Arlington today for a quick checkup and everything appears fine. So no worries at this point.
We did have kind of a scare a couple of weeks ago. I had been experiencing pain in my left shoulder and pain/swelling in my left elbow. My oncologist here in Arlington ordered a bone scan as a result and it looked suspicious in the left knee. Elbow and shoulder looked alright though. As a result of the nasty looking bone scan the Dr in Houston did a PET scan (which is the gold standard for diagnosis.) This scan along with the bone marrow aspirate indicated no problems so I am officially still in remission as of 6months post transplant. The bone scan results in the left knee were most likely the result of arthritis caused by favoring my right knee during my first bout in March of 05.
I am back to work full-time (kind of), I am having to take a day or two off here and there due to little illnesses and the like. But luckily my management team has been very supportive and understanding of my reduced capabilities.
As I now have the immune system of a 6 month old, it will take a while for me to get totally back to normal. I have heard on numerous discussion panels that after a year or so you are a lot closer to normal. I think a lot of this has to do with going off of the anti-rejection medicine. Of course everybody is different and hopefully I will be ahead of the curve rather than behind it. I believe I'm already ahead of the curve with returning to work at 5 months.
I will try to write more often in the future. I will have another checkup in Houston on 11/12/07. So I will try to write with results from that appointment.
As always thanks for your thoughts and prayers.
Shaylor
Monday, September 3, 2007 -
Well it's time for another update or past time in reality. Sorry I have not written any updates lately, but no news is definitely good news. I have been doing well since coming home in July. My blood counts have finally started to stabilize, and I have not had an infusion since 7/21/07, this is extremely good news as I was beginning to get worried that I would be transfusion dependent from now on.
We are going back to Houston for a Dr's. visit on Wednesday and I am going to ask for a release to go back to work for half days starting on 9/15/07, or before if I can work it out with the benefits people at work. I am really missing the chance to raise a little hell at work as a QA guy. Besides daytime TV is quite boring; I believe I have seen all of the documentaries available on the History channel and A&E.
I have been able to do more things and my strength seems to be coming back pretty quickly. I hope to start some weight training when I go back to work, if the Dr. will approve my being in the gym. My hair is starting to come back in but is very soft and downy - almost like a babies hair when it first comes in. The neuropathy (loss of feeling due to nerve damage) is starting to resolve. This is both good and bad in that the feeling is starting to come back and my feet and hands do not constantly feel like they are asleep any more, but they are now painful when used. The best I can describe it is how it feels after your hands or feet have been asleep and are just about to fully wake up. This gives me hope that they are about to get totally better. My right hand is just about to that point, very little pain or numbness. I still have my port in and have to do infusions of an anti-fungal each day, but that is probably my biggest inconvenience at this point. We are just hoping and praying that the transplant has cured me for good and we will not have to bother with this cancer thing any longer.
Well I guess that pretty much wraps it up. Please add my nephew, Leland Jr. (Deuce) and his girlfriend Leann to your prayers as well. They had a pretty serious motorcycle wreck last Friday night. This left him with a broken left femur and soft tissue damage to his left shoulder and left knee. She had a collapsed lung and fractured vertebrate in her neck and back and will be in a body brace for several months.
Thanks again to all of you for the thoughts and prayers, Shaylor
Saturday, July 21, 2007 - - Post transplant day 100!!!!
Well here goes with another update. Sorry for the long duration between updates, but I have been enjoying my time here at home and have not gotten around to writing one. I was released from my bonds Tuesday before last, which was about two weeks earlier than expected. Unfortunately at our last visit we found out that my Dr., which we liked very well was leaving to run a transplant program in Tennessee. I am doing well and Jeanne says I'm getting better every day. I have had the energy the last couple of days to fix some easy dinners for the family, so i guess she is right. Well I don't have much more to add so I will sign off.
As always thanks for your thoughts and prayers.
Shaylor
Sunday, July 1, 2007 - - Post Transplant day 80 - Countdown 20.......
Well its time for another update from Houston. We have good news and great news this week. The good news is that I have been given a weekend pass for next weekend to attend the Stark family reunion in Goldthwaite TX; we are planning on going Saturday evening in time for the washer tournament but will not attend the lunch to try and preserve my strength. For those of you unfamiliar with washers, it is a variation on horseshoes that is played with washers thrown at a hole in the ground rather than horseshoes at a stake, good old fashioned southern entertainment. Unfortunately due to my condition I will not be able partake in the beverage of choice for such endeavors but we should still have a good time.
Now for the great news, I asked Dr. Couriel on Friday after asking for the weekend pass if he anticipated my getting out of Houston at 100 days. At this point he said that he thought that I should just stay home after being off for the weekend. This is dependent on our getting the 90 day restaging done this next week and of course my staying well, but it looks like I have a good chance of getting out of Houston two weeks early. I will still require IV fluids which I will have to get from my oncologist in Arlington but I will be home. I am a little nervous about being away from the MD Anderson safety net, but I am very ready to be back home with my family and I’m sure Syndi is as well.
I seem to be feeling a little stronger each day and the tingling in my hands and feet is getting a little better each week. We are only two weeks away from being totally weaned from the steroids which I have been told will make a huge difference in strength and stamina within a couple of weeks of getting off of them completely. I am back up to approximately 225 pounds so my weight is about where it should be, hopefully I can maintain this weight and not get back into the 285-295 that I was when we started this journey in January.
Nothing more to add other than keep the thoughts and prayers coming, especially for good results on the 90 day restaging.
Thanks, Shaylor
Thursday, June 21, 2007 - - Post Transplant day 70 - Countdown 30......
Well here goes with another weekly update. This week has been a little tough, last Friday I woke up and started the day with dizzy spells and more weakness than normal. In addition my temperature was slightly elevated. I of course mentioned this to the APN (advanced practice nurse) that I see each day. She ordered blood and urine cultures and it was determined on Monday that I had a Staphylococcus infection in my bloodstream. As a result they put me on Vancomycin every 12 hrs for 7 days. Now before everyone panics, this does not mean I have septicemia. My body was controlling the infection prior to being put on the antibiotic since my temperature did not exceed 38ºC. I am still running a low grade fever so keep your fingers crossed that my body continues to fight the infection and win. I have started feeling a little better since I went on antibiotic on Monday and my appetite is returning as of today, so I think I’m on the mend.
Friday is John’s birthday (5th) so we are looking forward to celebrating his birthday here in Houston. I suspect a trip to Old Spaghetti Warehouse will be in order on Saturday since this is his second favorite restaurant following Taco Casa and as hard as I’ve searched there are no Taco Casa’s in the Houston or surrounding areas. That apple didn’t fall far from the tree huh.
Brandon is coming down to help with the kids and to return them to the grandparents on Saturday following our B-day celebrations. We always have to have an adult besides the caregiver here when the kids are here in case we have to go the ER for some reason. So big thanks to Brandon for his stepping up in a pinch for the second time now.
Not much more to add so I will end this post with the normal thanks for the thoughts and prayers.
Thanks, Shaylor
Thursday, June 14, 2007 - - Post Transplant Day 63 = Countdown 37...
Well its time for another update so here goes. We have had another good week this week with more good news. I am only required to go to the hospital for fluids on Tuesday, Wednesday, and Friday, the other days they give me the fluids to self administer at home. This allows for a three day weekend each week when Jeanne and the kids are usually here so this will be really nice for the remainder of our stay if I can just stay healthy.
They have also reduced the dosage of the Foscarnet ( used to treat and prevent CMV - Cytomegalovirus ) pump from every 8 hrs to once/day, so I no longer have to get up in the middle of the night to self administer fluids so this should help as well. My feet and hands are still asleep but we are hoping that after I am off the high dosage of Foscarnet for a few days that the feeling will start to return.
For now my medical team is slowly reducing medications such as the steroids in an attempt to wean me off of them for going home without allowing the return of the graft vs. host disease that I had early on after the transplant. So keep your fingers crossed and the thoughts and prayers coming that this all works out well. I have been very fortunate compared to some of my friends that I have made here in this respect, the GVHD can be really nasty and the steroid treatment really zaps your large muscles. Even though my strength has been greatly reduced I am still able to function without assistance which is not the case for everyone.
I have one other thing to add to this update – there is a new tab on the website labeled countdown. This is a calendar that I made that shows the days left of my 100 day stay here in Houston. Now this is dependent on no problems or issues as discussed earlier like return of GVHD or some other ailment so it is not set in stone, but it is at least something to hope for.
Thanks for reading this rather long winded post and your thoughts and prayers,
Shaylor
Post Transplant Day 57 -
Syndi is on vacation this week from taking care of her baby brother so the update is coming directly from the horse’s; well whatever. Everything seems to be going very well. My mouth sores as well as gut issues have gone away for the most part, allowing me to eat pretty much whatever I want. I still have to be a little cautious around really greasy or spicy foods, but for the most part can enjoy most things in moderation. I have gained weight back up to about 225 pounds or 100 kilograms and hope to stay in this general area, some of this is swelling from the steroids but much of it is just good old fashioned comfort food from mom and Syndi cooking. We have had only one small hiccup this week in that I fell down again leaving the hospital and scraped up my knee and embarrassed myself in front of several people. I just managed to snag my toe in the carpet as I was walking, and with as weak as my legs are could not run to catch up as you normally do and down I went. Of course falling in a hospital is a bigger deal than on the sidewalk – so over comes the security guard and nurses to do a physical and write a report. Just another embarrassing moment at MD Anderson.
We have received news back from much of the testing performed for restaging following treatment and the Dr says all is well. There was a small amount of uptake from the PET scan on the original area in my right tib/fib, however, an MRI was performed and it appears that the uptake is the result of healing of the lesions in that area from before, so according to the Drs it is not cancerous lesions. Same kind of phenomenon in my left elbow displays on MRI – mainly just due to the extensive damage that the cancer did to the bone and bone marrow in those areas prior to chemo and radiation. Further information is that we are now 100% engrafted with donor cells at this time. Of course nothing is ever 100% in cancer treatment I am finding out, but the hope here is that if all my cells are gone and only the donors cells are left, his should not be cancerous and there should be no microscopic cancer cells of my own left either.
Jeanne is here this weekend and we are celebrating her 37th/29th birthday together all weekend long. I have been told that I get a pseudo weekend pass this weekend. I still have to have all the same meds – but I get to administer them at home through small pumps instead of having to hang around in the hospital for 4-8 hrs each day.
Thanks to all who are keeping up with my progress, I am feeling pretty good and looking forward to being back home in Hurst around the middle of July barring any unforeseen problems with my recovery. Keep those thoughts and prayers coming – they seem to be working well. Thanks, Shaylor
Tuesday, May 29, 2007 - Post Transplant Day 46 -
After several days of massive stomach upset, we received the results of the endoscopy biopsy last Thursday. Shaylor does NOT have gut GVHD which is great news. Shaylor felt fairly sure that the Foscarnet was the cause of the stomach issues. I did a bit of internet research (dangerous!!!!) and determined that Foscarnet is frequently given to HIV/AIDS patients to treat illnesses of the immuno-suppressed. Virtually every website I found indicated that stomach pain and diarrhea are KNOWN side effects of the Foscarnet.
On Friday, we started the day very early with a PET scan (awaiting results) followed by Shaylor's daily trip to the clinic. We discussed the possibility of the Foscarnet being the culprit for the stomach upset. The PA stated that nausea is a known side effect but didn't seem to think Shaylor's issues were related to the drug. We pushed, and requested that perhaps we be allowed to reduce the Foscarnet dose and see if his symptoms improved. After discussion with the pharmacist, they agreed to drop from 3 daily baby bottles to 1. In addition, they prescribed a heavier duty anti-diarrheal, Limodal.
Not sure what change created a more comfortable weekend for Shaylor, but something helped. We don't have to know what, just glad that he improved and was able to feel better. Unfortunately, his bloodwork revealed a few of the CMV cells have returned. So, they started him back on 3 Foscarnet baby bottles today. If the stomach issues present again, then we will know that the drug is the cause. There are other drugs that can be used in place of the Foscarnet if necessary.
On Friday, he received the report of the MRI on the elbow. It was typical medical jargon, but the PA said it was all good......so in essence, the C is still gone!!
Unfortunately over the weekend, I succumbed once again to some bug. I saw the doctor today and have sinusitis and a touch of bronchitis. Got a steroid shot, some antibiotics, cough syrup, etc. Doc says I should be good to go in a day or so. So, my son Brandon (age 17) volunteered to make his first solo trip to Houston and be with his Uncle Shaylor for a few days. We are thankful for his willingness to step up and Shaylor has been very willing to help teach Brandon the "system". I just talked to them and they are doing well. In addition, Brandon donated platelets for Shaylor's account at MDA today!! (Yea, I'm a very proud Mom!).
For now, although Shaylor is experiencing some minor problems, these are all "expected" effects of the BMT. We are still optimistic that we will be leaving Dodge by the last week of July!!!
Syndi
Tuesday, May 22, 2007 – Post Transplant Day 39- 5:00 p.m.
My apologies for it being such a long time since I last posted an update. I was sick last week and Mom and Jeanne had to cover the week. Although I was home, between the year end school activities for my boys and various other things, I just did not get a chance to post.
Shaylor was released from the hospital on Thursday, May 10. Now, he is required to make daily visits to the ATC (Ambulatory Treatment Center) unit at MDA where they monitor his blood counts, and everything else. On typical days, he goes to the lab first to have blood drawn, then up to the ATC unit on the 10th floor. He receives daily infusions that take at least 4 hours, more if he gets anything special – extra magnesium, potassium, platelets, etc.
Late last week, he began having some intestinal issues – but nothing severe. The blood work indicated that he was CMV positive, but only with a few cells. This is a virus that is similar to staph that most everyone totes around with them, but only the immuno-suppressed typically have the active illness. His mouth and throat sores are better, and he is eating fairly well. However, his taste buds have not recovered yet.
The treatment for CMV is a drug named Foscarnet. This is administered via a baby bottle pump every 8 hours, 3 times a day. It must be removed from the fridge 2 hours before the infusion starts, then it runs for 3 hours, and must be removed when it is finished. So, if you think through that schedule, it can be quite a pain in the backside. Take the first bottle out of the fridge at 5:00 a.m., then start infusion at 7:00 a.m., remove the first bottle at 10:00 a.m., then take bottle 2 out at 1:00 pm., start infusion at 3:00 p.m., remove it at 6:00 p.m., then 3rd bottle routine hits 9:00 p.m., 11:00 p.m. and 2:00 a.m. And then at 5:00 a.m., it starts all over again! When I woke him at 2:00 and 7:00 this morning, I told him I was like his hospital nurse – being sure he didn’t get a solid night’s rest!
One of the side effects of Foscarnet is that it has a tendency to mess with the electrolytes. On Monday, he was dizzy, lightheaded and started to black out a couple of times, but was able to maintain if he stopped and steadied himself for a few seconds. Once he lab results were complete, virtually all of his minerals were out of whack – magnesium, potassium, calcium, etc. So, extra infusions on Monday extended his clinic visit on Monday to 5:00 p.m. He is a bit better today, but still has some tingling.
Dr. Couriel saw him today and is a little concerned that some of his gut problems could be GVHD. So, they have scheduled him for an endoscopy and intestinal biopsy on Wednesday. In addition, he will have routine, post transplant MRIs and PET scans this week.
On Sunday, he was able to walk 5 laps around the apartment corridor. We haven’t been able to calculate for sure, but think 6-7 laps = one mile. However, since then, due to the effects of the Foscarnet, he has not felt comfortable with walking. He will get back to it, but we just need to get his system regulated, AGAIN.
The past two weekends have been filled with visits from his kiddos. He has certainly enjoyed finally being able to have them here for visits, and Ashlynn was certainly excited to get to spend a night (one each weekend) cuddled up to Daddy’s back.
All in all, Shaylor is still doing very well. All of the things that have happened are very normal, and not unexpected – just part of the process.
Thank you to all who have sent cards and care packages and for all who continue to remember us in your thoughts and prayers.
Syndi
Wednesday, May 9, 2007 - Post Transplant Day 26 - 6:45 p.m.
After a very rough weekend, Shaylor has improved gradually throughout the week. They now believe that his weekend issues were due primarily to a drug reaction which caused the length of time between heart beats to lengthen. The suspected medicinal culprit has been discontinued and added to his "allergy" list.
He is able to walk 2 complete laps around the floor at a time and got 4 laps total yesterday and today. His white count is dropping a little bit each day but they are no longer giving him the shots which boost the white count. The doctor does not seemed to be concerned about the gradual decline.
The orders for today were to consume 2L of fluid and try to eat. He has had 2 eggs, 1 boost, 1/2 Whopper w cheese and some fries as well as 40 oz or so to drink. He is making a diligent effort.
They removed his constant drip and self administered pain med pumps earlier this week and he has not had any oral pain meds. Mouth and throat are still not well and hurt some when he tries to eat but he suffers through.
I have cleaned out his room today - leaving only his "inspirational" picture wall in anticipation of discharge to the apartment on Thursday. They have to switch his CVC (IV lines) from a 3 lumen (port) to 2 lumen sometime tomorrow and a few other administrative type matters and then he should be good to go!!
He is more than a little excited about having his two favorite children in the world with him this weekend at the apartment - and just in time for Ash's birthday on Saturday!!!
Thanks again for the constant prayers!!!
Syndi
Sunday, May 6, 2007 – Post Transplant Day 23 – 5:15 p.m.
Shaylor had a pretty significant set back on Saturday. He became very weak and unable to stand by himself. He had a brief blackout on Saturday morning and fell. He has a couple of bruises on his hands, but not any other injuries from the fall.
He is now labeled “red” which means he must call the nurse before he can attempt to get out of bed. He is doing better today, but still too weak to stand for very long. He was able to sit up in the chair for a little while this afternoon.
The medical team is not sure of the cause, but doesn’t seem to be especially concerned, and have assured him that they will get things straightened back out. His heart rate continues to be in the 50s fairly often and his blood pressure seems to fluctuate. But he has no fever or sign of infection so that is good. He has had some nausea and upset stomach and is back to drinking 2-3 boost supplements each day but will work towards getting back on real food.
For now he is in a holding pattern but chompin’ at the bit to get back to making laps. The day nurse had told him it won’t happen during her shift, but perhaps he can sweet talk the evening nurse. He knows that getting his strength back and becoming stable on his feet is key to being released from this joint!
I will try to keep everyone posted on his progress and thank you for your prayers.
Syndi
Thursday, May 3, 2007 - Post Transplant Day 20 - 10:15 a.m.
Shaylor is steadily improving every day. His white count stayed the same from Tuesday to Wednesday, but doubled today to 2.6!!!!
His throat is a little bit better. He ordered 2 over medium eggs and a chocolate boost today and was able to get it ALL down the hatch. That is success, folks!! One of the key hurdles he has to jump before they will dismiss him to the apartment is to be able to eat and drink a sufficient amount of calories and fluid.
Yesterday he walked almost 3 ½ miles and has already got in 1 mile today.
The doctor just came in and says everything looks great. They will begin weaning him off of the Dilaudid constant drip to see how he does with the pain.
The skin biopsy did confirm that the rash is GVHD, but the doc says it is well under control. The spots on his lower legs that we originally believed to be the GVHD rash are actually petikia which is mostly likely a result of some capillary bleeding from the low platelet counts.
He is having some issues with low heart rate. However, his oxygen saturation and blood pressure are still good. They will do an EKG today for precautionary reasons.
For now all is going very well!!!!
Our love to all,
Syndi and Shaylor
Tuesday, May 1, 2007 - Post Transplant Day 18 -11:30 a.m.
First of all I shall explain the new "Post BMT Updates" page. Apparently when you allow a techno challenged person manage a website, you wind up with "unclosed tags" (I think that is what JD said) that confuse the web software. So, a couple of weeks ago, everything I typed changed to bold regardless of what font I requested, and then late last week, it just decided that I could type all I wanted, but forget saving it! JD has been helping me out by posting to the actual website, and through a series of discussion in which I finally uttered the right explanation of what had been happening, we think he (not we) have determined that if I just start a new page, all format issues will be history.....cross your fingers! So, Latest Updates and Prior Updates are still available for viewing, but I will no longer post to Latest Updates.
Shaylor began to feel a little bit better on Monday afternoon. They did a skin biopsy of his rash to be sure that this is simply a mild form of graft vs. host disease - forever more referred to here as GVHD. Supposedly, GVHD in the form of a mild rash is a good thing. We should get the results of the skin biopsy in a couple of days. As the PA was taking the skin sample, she had a hard time even finding an area that had a significant degree of the rash and then stated, "I think the rash is getting better by the hour." So, for now, we are told this is all good.
He didn't feel like walking in the morning, but got in 8 laps in the afternoon and early evening. He had considered trying for 2 more to get a full 2 miles, but got interested in a new challenge - Sudoku - which Jeanne's friend Melinda had sent to him. He said he started in and worked on it until !! So, this is also good. IV Steroids used to treat the GVHD rash can do a number on the sleep pattern anyway.
Today his white count is up to 1.3. This is a very slow increase compared to how quickly the whites elevated following chemo (once they got started). But again, the docs say this is good. A slower increase means the body is getting more time to adjust.
If all continues to go well, the doc has says that he could potentially be out of here by early next week. We can't get our hopes up too much, but this is a good indication that all is going EXTREMELY well. I always hesitate when I say or write that all is well as he is still in a fair amount of pain from the mouth sores and sore throat. But today he is actually tired of liquid meals, and has ordered eggs, ham and chocolate milk for breakfast. Hopefully, it will go down reasonably well. The eggs arrived before I finished this post (well okay - so I took a break to walk with a friend) and real food is still not an option. Back to the Boost!!!
So, continue prayers for all to go really well.
Syndi