Welcome to our amazingly strong Child's Web Page. It has been provided to keep people updated about our Child. Tyler was diagnosed on July 22,2004 with Acute-lymphoblastic leukemia (ALL)t-cell..... Sadly Tyler relasped almost 18mths into treatment on January 12th,2006....He had a Bone Marrow Transplant April 13th, 2006
Journal
Friday, April 10, 2009 4:16 PM CDT
Hello...
Here we are another clinic day, amazing how 3mths just goes right on by....although todays appt was pretty big since its Tyler's 3 year post transplant... so its always a big one with lots of test and blood work...to think its been 3 yrs since transplant...just blows my mind..... in some ways it feels like yesterday...especially seeing everyone...but yet in another sense it feels like a life time ago....to look back and to remember what we actually used to do....i still cant wrap my brain around it, knowing how i did it all....with the kids...going atleast 3 days a week there....for 6hrs or more...depending on what the need was...Nicholas puking everywhere on top of Tyler puking too..lol...it really just seems surreal whenever i think about the last 5yrs...although that first day is something i cant ever forget no matter how hard i try....one of the longest days in my life..and yet things moved so quickly in all what they needed to do for Tyler...there are just so many things that are going through my mind as i even type this.......Nicholas has literally grown up in CHOP....he was 6wks old and he is now 4 going on 5.....it all just blows my mind thinking back....
As for today Tyler did well...they did need to draw blood from the arm not from the finger as Tyler would so have loved it to be...he gets so worked up ..... i dont think it hurts him i just think the thinking process does him no good...but he got trough it....with a huge typical Tyler melt down...which in a few with some distraction he was fine.... Dr. Rheingold they checked Tyler over...and he was given a clean slate.....and of course the labs came back and they backed up her with a great CBC.....it was just about the same as when his labs where done 3mths before....I'll take it....then it was on to the next appt having a ekg and a echo...of course Tyler isnt a fan of these...(not suprising) because they go to close to his port scar....he is real funny about anyone still going near that area .....but again he did great and it was over pretty quickly...we had some time until we needed to go for his PFT's so we ate and sat in the atruim while the kids let go of some extra energy....finally we headed up for the last of the test...PFT's...Tyler seem to have done well...he has never really been great with this test ....but seemed like today he actually understood what he needed to do..and he liked that guy who worked with him during it....Tyler was just more excited he got to keep the mouth piece and the nose pincher (which they would typical chuck)....no clue what he will ever do with those but if it makes him happy so be it....that's my Tyler...lol...finally the day came to a end...but over all wasn't so bad....I had my Aunt Merrily there who stayed with the kids for the first part of the day to help out which was great....and we had my niece with us today as well....which also kept there focus on other things...not that there ever bored when we go to CHOP...lol....We were suppose to meet with the Transplant team but we didn't .....and they like to see there kids 1x a year so we go back in 3mths and we will see them at that time....have to make everyone happy i guess....So today I can say with a smile ....things are good....and its always great to see that Tyler is still getting checked on....through his website.....although I dont write quite as much as i used to...since things have been well...so i tend to update just during his check-ups....but am always grateful to you all for your constant support and prayers....and through my extended cancer families who really do understand this whole "cancer world".....many many thanks to you all....
Just to let you know as well...my sister an law...will begin her chemo Monday...so now we need to continue with prayers for her...during this battle she will face....its great to be able to be there for her...to be able to give her insight with my understanding of the 'cancer world' so i feel in all ive learned i can pass it to them and help guide them through there fight...and a fight they WILL win.....she does have a website through caringbridge....marjoriegormleygoodwin... to anyone who would like to read about them....again thank you ...it really couldn't be said enough...
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