HOUSTON...

we've got BONE PAIN!! he has some good drugs to combat the pain- so we are both happy. now we wait for the proof with some better numbers on thur. i celebrated by buying a gallon of chocolate milk (the kind every mom says no to). ha- watch me throw caution to the wind... AND as if that's not enough..tonight is a Big Brother night. (yes, i admit it, i watch reality tv) who else is brave enough to admit it??

raise your glass (of chocolate milk) to cheer- hooray for the bone pain!

amy

waiting impatiently

so we wait. impatiently. today his counts are still at zero. he went to the hospital twice today- got what he needed- and is now tired, but feeling okay. no bone pain yet. and believe me, i asked.

hoping tomorrow brings some bone pain- and the next day a JUMP in his numbers and the feeling of "safety" for a few days. i'm loving the avril lavigne song "keep holding on" lately. music is so amazing- changes my mood better than almost anything else. (well, that and having a whole hour to work on my images in photoshop) have a good night.

amy

finding it within

this is Isabelle Christenson- she is the little girl i wrote about before- Skyler's friend. she went with her mom and sister to a relay for life fundraiser and lit a candle in honor of glenn. Isabelle is such an amazing and inspiring little girl. she received a multi- organ transplant- and then a year later- a kidney transplant- and just this week she tried out and got a call back to perform in a production of her all-time favorite play- "Annie." my fingers are double crossed for you. talk about finding strength within- she is truly incredible. thank you so much Michele - and Maddie and Izzie- you guys make me smile.

it has been raining all day and i love that. it has given me permission to stay home and just reorganize a little. glenn is feeling okay- very tired- and having some issues that tell us his platelets are low again. we will be back in tomorrow for more blood and platelets. he has not felt any "bone pain" yet. i am waiting anxiously for the bone pain. it is a signal that his own marrow is starting to recover from being wiped out- and it is ready to start producing blood again. it is VERY painful for him for about 24 hours...and then the next day his counts are miraculously recovered- and he is well again...until the next round. we have been giving him the nupagen injections every night- and that is what helps his counts to recover- but unfortunately as that happens- it causes this deep bone pain. the pain signals the recovery. so a couple of times today i have (with raised eyebrows)hopefully asked,"any bone pain??" he is as anxious to NOT feel that pain, as i am for him to feel it. he is funny- he pretends to be mad...but smiles as he flips me the bird.

thank you so much to the kind family that dropped off some rainy day kids fun today- and a surprise family lunch on the front doorstep. the kindness of so many people continues to amaze me. humble me. lift me up. and inspire me.

i'll let you all know as soon as the bone pain starts. smile.

amy

soup night

we are settling in here at home tonight for some of my grandmother's famous chicken noodle soup. (made by me, of course, sans homemade noodles) glenn spent the entire day at chester county hospital (5 min. from home) getting 2 units of blood and (get this) 5 (FIVE) units of platelets. he woke up this morning with little red spots under the skin all over his body- and in some places...was even bleeding a little. he was REALLY in need of platelets. (they are what helps you to clot) he is looking a lot less pale- and feeling fatigued, but okay in general. i must say that his spirits are still pretty good- he continues to put me to shame in that category. i am definitely more "all over the map" instead of even keel. he said they took good care of him at this hospital- and though he cannot have chemo there because of the specific nature and intensity of his type of chemo- he can continue to schedule "help" when he needs it. (will go in for more blood products on monday) so off to bathe some kiddos and have a quick bowl of soup before an early bedtime. enjoy the weekend. oh- and glenn said that i should learn how to capitolize in my blog. i thought it was kind of cool with no caps. do you all think i am a grammar nightmare? nevermind. don't answer that.

enjoy the little moments of your weekend- don't get caught up in the minutia.

colby james is three

my little one isn't so little anymore! he is really his own little person. i spent a few minutes outside yesterday taking some images of the birthday boy. he has had fun this week telling everybody, "it's MY birthday!". i gasped out loud when i pulled this first pic off of my camera. until now i've been in complete denial that he is not a baby anymore. the "crown" was a gift that samantha made for colby- it says "caesar" on it. glenn calls him "caesar" due to his lack of patience and level of urgency with his every need. sigh. how about that look he is giving me in the pic with the crown on? don't buy it- he's not as sweet as he looks.

we are all doing well here today. enjoying some birthday cake.

thanks to my friend Jill for dropping off a box of snacks "just because" last week- and thanks to all of you for checking on us.

much love-

amy

wednsday

yep. feels like hump day here. i remember hearing that expression when i was a kid and thinking...what the heck does that mean? i get it now. glenn continues to do well this week. it has been nice to hear some real belly laughs around here- mostly during his incessant obsession with the show CURB YOUR ENTHUSIASM. it really is a funny show. the banter around here has been really funny, actually. isn't it great when so many moments turn into a Seinfeld (or Larry David)-like diatribe? we may be starting a whole new movement. instead of "Think and Grow Rich" or "Positive Mental Attitude" type self-help, the movement would encourage people to change perspective and see "those" moments as such. just funny little quirky moments to laugh at. like today when colby peed all over the floor at the store. (twice) oh yeah, that really wasn't THAT funny. well, you know what i mean.

we have coordinated with the local hospital to give glenn blood and platelets on friday and monday- so that will be great. we are hoping no fevers/scares/adrenaline rushes over the next few days.

sending much love-

amy

honestly

i know you all enjoyed me coordinating my own standing ovation, but i know some people who truly deserve one. glenn works for the most amazing people. full of heart and soul. and integrity. and kindness. and all the things that are usually not spoken about regarding work relationships. i get all teared up when i think about it now. i didn't want glenn to switch companies when he took the job at DEWEY. (4 years ago) i was so very wrong at the time. i worried about things like losing his position and edge in the consulting world. what the heck do i know?? i know now that somehow he connected with the right people this time. a couple of weeks ago samantha asked me how we are getting money if daddy isn't going to work anymore. she was really concerned. i told her how kind John and Ken Dewey have been to us- and how their company continues to support us during this time. we talked about strength of character and about doing the right thing, and about our responsibility to pay that forward as time goes on. we talked about surrounding ourselves with family and friends and how important it is to talk honestly about things that matter. John and Ken, if you are reading this, thank you. you do deserve a standing ovation- not only for how you have supported glenn during this time, but how you have put yourselves and your company out there time and time again. i just couldn't let another day go by without that said. there. whew. much better now.

standing ovation please

okay, i deserve a standing ovation for "patience beyond measure" today. glenn is home and just fine- resting. it's not about him. though he DID start it all by asking me to go to the grocery store (for the third time this weekend) for some cravings. anyway, i went with colby in tow. colby in tow with no nap. this is quite the daring feat- especially at Wegman's where there are always at least 500 people in the store at any one time. add to that colby potty training (which means he is on a cookie high from bribery) okay, so when we got there- there was no fancy "car cart" available and i outwitted him by explaining how he could stand on the edge and hold on- and how that would be more fun than a "car cart". he bought it- and off we went to blast quickly for the strange items on glenn's list. (by the way, the bread crumbs are always a bitch to find - they keep them near the ketchup there- took me 10 minutes to find it.) anyway, while sweating it out looking for the breadcrumbs, weaving in and out between the mob of shoppers, this little 4 year old in a coveted "car cart" sneared right at colby and started taunting "you don't have a car cart...you don't have a car cart" "i'm in a car cart...and you're not". i thought for only a quick second- furrowed my brows at the kid- and kept right on searching for the bread crumbs. he is a lucky little shit. so i am accepting the standing ovation- because it could have gone either way today- living on the edge. LOL

amy

busted out again

so we busted out of HUP again this morning. it was a record for us- we were out by 9 am. unfortunately we had to pull over for some puking on the way home, but our spirits were good. it struck me after that just how much i love him, and how well we get along. no sweat. just pull over. quickly but safely. after finished, pull back onto highway and comment on the beautiful weather(sunny and breezy), and agree that it's always a relief when it's over. somehow we just joked and laughed the rest of the way home. it's quiet here now for a few minutes until mom brings the kids home. i'll be off to the laundro-mat to wash the comforters again and to the grocery store to buy some ingredients for some homemade soups. also heading to the library equipped with a list of your movie recommendations. keep them coming. (would love to hear from all you blog stalkers i hear about- but don't know) SO good to have him home.

enjoy the weekend
amy

TEAM GLEASON

well, i'm impressed! thank you to deb for sending in this team gleason picture- WOW! that must have been quite an undertaking getting SO many people in green - all in one pic- and holding that HUGE sign. deb is a friend of glenn's parents- and she belongs to a women's chorus in dallas. THANK YOU so much for the support - it really means a lot to us.

glenn is doing just fine in the hospital this week. he is having some problems with his vision (though they are not concerned) and some nausea- but otherwise just receiving daily chemo. he hasn't been able to access the internet this time- so we have been quiet on the blog- i might start updating every 3-4 days instead of every day- so don't worry.

i have information on some upcoming events to share over the next few days- one is the livestrong walk- i think the date is August 25th (for those of us in Philadelphia). i will definitely be there with the kids- and welcome anybody who wants to walk with us. i'll add more info later. (just save the date if you want to come) we also registered as "TEAM GLEASON" for a "light the night" walk in Malvern (i think chesterbrook?). this walk is on October 13th- in the evening. the proceeds for light the night go specifically to find a cure for blood cancers- so we will ALL be there- (hopefully by then) celebrating glenn's remission and end of consolidation chemo. i get emotional just thinking about a big group of us there- surrounding glenn with his "survivor" balloon. i will write more about how you can participate (from near and far) later- just wanted you to save the date if you are local.

thank you as always, for your continued interest and support for TEAM GLEASON. the truth is, some days are just hard. hard to wake up. hard to be in the moment. hard to be positive. hard to breathe. hard to laugh without crying. thankfully, this week i squelched those hard days with a visit to some good friends- and a quick mini vacation. thank you guys.

tonight i will be at HUP with glenn- for date night. hoping to watch a good movie. hey, why don't you all respond with your favorite "pick me up" movie of all time? that's a great idea, if i do say so myself. okay, just to let you know- glenn's favorite movie is shawshenk redemption- SO AWESOME. it is the ultimate movie about hope and perserverence. and of course you all know that the movie RUDY is very special to us. so comment below (you can sign in as anonymous if you have never done it before- and sign your name to the bottom of the comment) you have to publish commment to have it show up. SO let's hear your favorite pick me up movies. i'd love to hear some i've never seen. hey, i'm already cheered up just thinking about it. thanks.

amy

museum fun

in an effort to distract ourselves from hospital stuff, chemo, and missing daddy, we left HUP and headed straight for the please touch museum. (children's museum) colby had a great time riding a boat to "where the wild things are". (his FAVORITE story) chase and sam loved the theater and also the kid sized grocery store. afterwards, we went to the franklin institute right across the street. how many of you have been through the world's largest model of the human heart? you can actually walk through the chambers of the heart. do not attempt this if you are claustrophobic- got my own heart pumping quite a bit. samantha rode a bike on a high wire - and chase liked all the info on king tut. chase somehow got confused between the words "king tut" and "kentucky"- and called him "king tucky" all day.

Back for more

Sorry for the lack of updates this weekend, we spent time as a family just trying to do as much together as we could. We had a great time - shopping, eating and watching movies. 

This morning we got to the hospital early and got checked in for this weeks round of chemo (Round 2). Amy took the kids to the Children's Museum and the Franklin Institute after she dropped me off. Oddly enough - I had the same room as I did last time. My suite was ready for me.  

Not much else to report except we are here for the Chemo. Feeling well and ready for a good week.  God bless all.

Glenn

today's sunny day

i love this guy. don't we look like newleyweds?

this week is the good week. in between each round of chemo- there are three bad weeks- and one good one. actually, i don't even know if the first week should be considered a bad week "healthwise", but since he has to be in the hospital for a week- i am considering it a bad week. right now his counts have recovered, and he is looking and feeling well. he is still tired, but other than being bald and a little pale- you wouldn't know he was sick. and really, he's not (sick) right now. but he does have a disease that is known to come back in 70%+ of the cases. that's the deal. a lot of you have asked, if his last biopsy showed zero cancer cells, why the continued chemo? the biopsy showed zero cancer cells- within the limits of their testing. from past experience, they know that those little suckers are in there hiding- so they continue chemo for a while to try to obliterate it. each month glenn will go inpatient for the week of chemo- and then come home to recover.
7-10 days after the last day of chemo- his counts will bottom out (meaning no immune system- no ability to fight infection) and he will need transfusions of blood and platelets for a week or so. it takes a little more than a week for his counts to recover again (hopefully) and then he has one good week recovering before the whole thing starts over again. we have 3 more rounds of this to get through- which puts us into october.

(hopefully the last paragraph doesn't read like that "Whose on first?" comedy routine-i tried to keep it simple- the words just want to come out choppy this morning.)

so this is the good week. i love the good week. though it's hard because the good week precedes the bad weeks. my emotional radar is beeping STORM CLOUDS AHEAD when i am trying hard to enjoy today's SUNNY DAY.

Eye To Eye: Dr. Jeffrey Chell (CBS News)

This is a great video explaining the process of helping to get more donors involved with donating their marrow. Make a commitment today to not only sign up yourself, but five other people who you know. It can help save a life.

TEAM GLEASON

This image was sent in by my aunt, Mother Mary Anne OSB. She is the mother superior at a monastic retreat facility that is called St. Emmas. I have been going there since I was a little girl- and it always conjurs up some incredible memories for me.
It is located in Greensburg, PA. She sent this image of a sister who is very experienced in praying. She entered the convent at age 18- and is 93 years old now. This image is titled "thumbs up". THANK YOU!!

href="http://2.bp.blogspot.com/_XLxpVLWMVgQ/RpJnIBhtJ2I/AAAAAAAAAQU/Ugwmw7imgFA/s1600-h/claffey2.jpg">


This is a pic of my dear friend Meg and her children- on a recent visit to the house. (Meg helped watch the boys when Glenn was first diagnosed- and stopped by recently with her children clad in green) I am SURE she was expecting me to take a pic so she could be on here- and I obliged!!!) So if you stop by wearing Green- you two get lucky with a complimentary portrait! LOL (this pic was taken prior to Colby's haircut- and now we hardly recognize him!!)

all is well here- enjoying the slow time.

amy

breathe

we busted glenn out of the hospital late last night. the kids were already in bed when we got home so glenn got big greetings early this morning. samantha is at a friend's house tonight- and glenn was feeling a bit of cabin fever- so the boys and i kidnapped him and drove around a little- and went to marsh creek for a little walk. on the way there we were lucky to see 2 big beautiful hot air balloons taking off- and we pulled over to see. decompressing...it was a lovely night. have a good weekend everyone- we will be home playing board games and enjoying each other. hope you can do the same.

amy

jiggity jig

hope i didn't just jinx it...but glenn should be coming home later today. he is feeling a little better- but still having some problems with the line so they are going to try to fix it- and send him home later today. his counts are recovering- which means his body is producing marrow again. he will come home until the 16th when he will go back in for another one week inpatient round of chemo. this will be the second of four rounds of consolidation chemo. (one week in hospital 2-3 weeks to recover- then wham- chemo again)

me, i'm learning how to take it one day at a time. this is hard for me, since i somehow like to consider myself a sort of superhuman. i cannot tell you how many times i have sat down late at night to try to search for an answer/cure/better info to this problem. if i find it, you will be the first to know, that "I" amy gleason, in west chester, pa have singlehandedly figured out the solution to cancer right in my own kitchen. when we were dealing with skyler's illness, there was no protocol. so it felt good to find solutions where there were none- and have the doctors try things i suggested. i was addicted to reworking the problem in my head. any success fueled the fire. with glenn's cancer, there is a very strong and valid protocol. i can guarentee you that no person at HUP considers my opinion in the treatment of leukemia- but somehow i feel the weight of figuring it out. so that is my goal for the next week. learning to completely let go of the medical angle of this- and just manage the emotional portion. for some, this part is easy. for me, not so much. (insert banging head against the wall icon here)

i am open to suggestions here- best way to remind myself of this? rubber band on the wrist?

much love- and thanks-

amy

Tuesday - things I don't recommend

Today has been interesting. No more fevers yet and I am feeling fine. This morning a nurse who was flushing my central line pushed too hard and blew a hole in the line. This is the second time in 2 weeks. Luckily - it is an easy repair by the interventional radiology team. Then the ear, nose and throat team came in to check out my sinus infection with a camera. It looked harmless until it was halfway up my skull (Ouch). Good news - looks like the sinuses are clearing up. Doc's tell me I should be out of here by the end of the week. I don't recommend having a camera up your nose.

Have some new team gleason photos. The first is from a good friend of the family - Erica Aguilar. Here is what her Quote says:

GO TEAM GLEASON!
NO LONGER FORWARD NOR BEHIND
I LOOK IN HOPE AND FEAR;
BUT GRATEFUL TAKE THE GOOD I FIND,
THE BEST OF NOW AND HERE
-John G. Whittier

Amy's cousin (Leah Garzarelli) and family (The Lysics) were at the beach this past week in North Carolina and sent a great Team Gleason photo written out in shells in the sand. The funny part of the story is that someone ran over the shells while they were trying to gather the group. Luckily they were able to make repairs. Thanks for the photo.

Fevers, Chills and Drugs - Oh My....

Having a fever while you have no white blood cell count is not very fun - in fact - it sucks. The good thing is that we got to the hospital within an hour and they were treating it immediately. During the night I got transferred from the ER to the 3rd floor in the Rhodes Building at Penn. The combination of multiple antibiotics, steroids and good old Tylenol seems to have done the trick. My headaches went away and no more fevers. I also got two units of blood because my hemoglobin and red cell count were low as well. They will probably keep me for a few more days justto make sure the fevers don't sneak up - the good thing is I feel 100% better and they are taking good care of me.

I have some new Team Gleason photos from some actual "Gleason's". The first photo is of my cousin Patrick Gleason who is in Afgahnistan with a group of amazing soldiers. Every single one of these men have risked their lives and time from their families to fight the war on terror. I am so proud of all them. I thank them for taking time from their jobs to support Team Gleason. God bless all of you.




The next picture is From Tad Gleason (Patrick's Brother) in New Mexico with his wife Pam and a dear friend of our family Lynne Fullerton-Gleason. Tad is in the Army and is also heavily involved with the war on terror overseas (we can't thank you enough for your dedication to our country). Lynne lives in Albuquerque and works at the University of New Mexico. I have known Lynne for over 30 years and appreciate all she has done for our family over the years. Thanks you so much for taking time to send in your Team photo.

bump in the road

that's what i'm calling it. glenn had a bad night last night coughing and feeling unwell. he spent the day feeling out of it- in bed- and eventually got the chills and fever to go with it. he is at the ER now- and will be admitted tonight back to the 7th floor Rhoades at HUP. he's okay. he checked the radio to see who was winning the race on the way to the ER- if that tells you anything. i'm disappointed, a little sad, but working on it. it has been hard to see him really sick again after doing so well for a few weeks. i liked the momentum we had- and though i know that all of this is part of cancer normal...it's harder to ride the ups and downs after some good days. i was wrong last week about the white counts responding to the neupogen. his white count is zero. they will put him on a lot of antibiodics to fight the infection for him- because he has no immune system to do so.
samantha talked a little tonight (after we took him to the ER) about the things that she misses. it was really hard, but also good to hear her opening up. she is an incredible kid. we are off to snuggle in bed and watch the planet earth dvd.
i'll update as we know more. send us some prayers, strength, and good sleep.

much love-

amy