Hi guys. I wont even try to make excuses for not updating you all . Some of my family was going to try , but our status kept changing so I felt I should be the one to do it. So here goes.... At last post we were waiting for a room to enter MDA for 2nd round chemo. We got in on that Fri eve and they did start chemo at 2 am. We stayed until tues afternoon and got home about 5pm feeling pretty good with no fever. At about 11 pm that same evening we were on our way back to the ER at MDA with a fever of over 101 that would not lower itself. Matt was readmitted for another 3 days until that Fri eve. Expecting the infections they warned us almost always happens during this round , cultures were monitored while Matt was given broad spectrum antibiotics. Nothing grew. A blessing. They did say that 50 percent of the time they never find out what the cause is and it is considered a neutropenia fever. Low white count fever. We made 2 or 3 visits a week to MDA for blood ,platelets , and spinal LP chemo. On sun eve , the 27th , Matt got a nosebleed due to low platelets that we couldnt stop so dad drove us to the ER to get the needed platelets and help. We were due there the next morn for labs and review but couldnt chance the wait. He was released around noon to go home. Since then we have been holding our own, monitoring blood and platelets, waiting hours on end for these life giving fluids , for there is a nationwide shortage of all of these and the holidays arent even here yet, when they always say things get even more seriously scarce. There have been new plans developed for Matts treatment. Starting Monday, November 11th, his birthday, he will be starting a 6 day outpatient proton radiation Treatment to the spine and brain. Then on that next sat and sun , outpatient IV for mouth sores prevention or lessening, with hospital admission on the 18th. On the 19th starts 4 days of full body radiation , 23rd sees one day of chemo, and the 26th is the date set for transplant of his brother Wesleys stem cells once again. I think I had told you the plan was to use an unrelated donor this time but they could not find a perfect match , only several 9/10 matches, and the risks were higher , so they are going with the radiation to totally clean the body and to let Wess cells enter a clean house, in their laymens terminology. Our drs are very protective of Matt and we have come to trust their judgment. We have been told that this will be tougher than last time , for the radiation is not an easy road, but it is the way to a cure that is available at this point. We have asked some hard questions and we have gotten some hard answers, so needless to say we are all nervous and scared. Basically , this NEEDS to work. So I know we can count on you all for the even more intense need for prayers for strength and stamina and cure than before, if that is even possible. You have all been so great and so selfless , and we cant ever thank you enough. I seriously still cant believe this is all happening, and the fact that it is right at a year since this all blew up is mind boggling . And if anyone has the chance to donate blood or platelets at MDA to help not only Matt but all the others there , please do so. One day we waited 6 hours for platelets and when I walked the halls of the treatment center NO ONE had any blood or platelets hanging. At that point you realize that you cannot go to HEB or WALMART and pick these up off of the shelf. PEOPLE have to selflessly GIVE you a part of THEMSELVES. And unfortunately MDA does not get any of the blood products from our area donations unless there is a surplus, and then they have to buy them, and lately everyone is short. But please do not stop giving. Someone is being blessed. Some family is thankful. And the more that is donated the less the shortage, the more the surplus, the more the chance for MDA to buy them. With the holidays coming people tend to have less time to donate , busy with their own details of life, as we are told here. And even just one slow day causes a back up like you wouldnt believe. So please keep this in mind. Matt will be needing much of this precious substance for transplant to keep him sustained . I thank you all who consider this gift. As one last thought...... While resting at MDA after his first transplant, waiting for engraftment of his brothers cells, Matt passed the time on the iPad looking up trivia and sports statistics etc. By chance, He came across the state statistics for high school basketball leading scorers by classifications for the school year 2011-2012, his senior year. He realized that HE was the leading scorer in the state of Texas in our classification . His name was not there though. Your points need to be reported to someone for that to be documented. Since basketball is not considered one of the major sports here, not that much attention is given to it as to other sports. We know his scores for as most parents we kept track, and even tried to post in the papers ,but were told it had to come from the school to be valid. Needless to say , he was pretty upset, for it was his favorite sport, and he knew that no one would ever know his accomplishment. I promised him that I would make sure that somehow people would know, and I feel that I owe him at least this much for all his efforts to let all of you, our new large family, in on Texas s best kept secret......Matt Pohler- leading scorer in the state of Texas in boys 1A basketball for the year 2011-2012. And as a note to any one out there that has the privilege to work with our beautiful children every day, dont ever consider anything that they accomplish not noteworthy. Every effort made by children to excell should be considered important enough to document even if it is not YOUR most important type of endeavor. You never know how that accomplishment can play into their life. And so we are home , we hope, until Monday, trying to squeeze in as much fun as we can and a birthday party for Matt and packing and cleaning and getting ready for a busy week of traveling back and forth , for Matt would like to try not to have to stay there if not necessary, and coordinating schedules of my other 5 wonderful children with all the travel in hopes they can assist with some of the driving. Baby brother has them all wrapped around his finger. And we love them for it. Let us all keep the faith coming into this blessed time of year. Love you much , Gerrie
Posted on: Fri, 08 Nov 2013 15:42:38 +0000
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