Monday, December 1, 2008
Monday... the big day...
Well, we wake up... It doesnt feel like my birthday at all..Although, i do not want to face this birthday cus it leaves no room before 30... but its here... Chris and I get ready.. I finish his packing... and we are ready to go.. we say goodbye to my parents and Rex... and I get a call from Jackie.. she asks if i have the consent forms.. and asks me to swing by the cancer institute before we go to the hospital for admitting.. so we do..... DR Strair and Jackie talk to us by the car... and they say they will have info by 3pm about the scans.. they want him to get another pulmonary function test and tell us that basically they want to make sure he has been somewhat responsive to treatments before sending him into transplant.... they want to see MRI and petscan.. etc... they tell us that he is in a group (I guess leukemia group) where there is a 50-75% failure rate.. ugh.. yea didnt want to hear that.. but they mention possible experimental treatment if they dont do transplant... so we wait and wait ... Eventually they do the pulmonary test... and then Strair comes in to see us... he tells us his lungs are much much better than last time... which is good... he tells us that Chris's bone marrow was clear since last chemo but that his leukemia on the bones has been pretty resistant to the chemo.. the BEST thing is to be in remission going into transplant.. Chris is not.. which makes it harder for it to work.... but there is no hope if he doesnt do transplant cus the chemo has not worked to put him into remission... the transplant provides hope... the doctor cannot give us a statistic... every patient is different.. even standard ones... so the worry is that there is more leukemia to fight... basically the MRI is showing some spots where there is still leukemic areas... the actual spinal fluid and bone marrow look good.... soooo Strair made sure with Chris that he still wanted to go thru with it.. I think Strair was sure of Chris's answer but he has to be honest with us... He is getting 3 chemo drugs thru IV starting tomorrow Dec 2nd... and they are supposedly pretty tolerable.. then on December 11th, they infuse him with the bone marrow.. the donor's bone marrow.. and then we wait 12-14 days for engrafment... the counts will be down starting around Dec 11th and we wait for the counts to go up.. and they start checking to see if the donor's immune system has (hopefully) taken over.. that is the goal... if he starts having side effects (like diareaha, rash, etc) they will test him for graft vs host disease which is common.. and we actually want to see a lil of that cus it means the new immune system is noticing the weird stuff and attacking... we just dont want major attacks cus the transplant can badly damage important organs (lungs, kidneys, heart, etc) and we do not want that.. But that is what Strair made us aware of today.. this could be fatal... but its the only chance of beating the leukemia..So again, the donor is male and 23 and most likely has some pretty good strong fighting bone marrow... and we are counting on that to fix Chris... Dr Strair told Chris he'll be back tomorrow.. and that he doesnt want Chris to fall again.. so he needs to stay in bed or get help... physical therapy will be around.. and we are focused on the goal... Strair left... we were both emotional.. a lot of this stuff we knew... We knew a transplant isnt a guarentee.. we knew that not being in remission makes it harder.. we knew its gonna be a rocky road... but hearing it all again and whatnot.. its overwhelming... But, Chris just got back from specials downstairs.. they put in his triple lumen port in his neck.. and he starts chemo tomorrow... He will be ok this week.. but after that is when the crappiness starts.. counts drop... he feels icky.... but one day at a time.. and still praying... Sharon the chaplain reminded us today that we were praying for this.. we wanted him to get to transplant... and i have to keep remembering that... this is what we wanted... other alternatives woulda been very bad... so we are in a place we asked for... and Chris is a fighter... he is ready.. i have to stop leaking.. my eyes keep going.. but i will find a way to stop tearing... For those of you who want to visit... they will make you put a gown on and probably a mask just to keep chris safe... visits should not be in huge numbers.. just to keep him calmer and less germs... and if you are sick, dont come!!! No live plants or flowers cus they can have bacteria (they arent allowed on the floor) and other than that, chris would welcome check-ins via text or call... like i said, this week he will be feeling good... after next week, he might be pretty drugged up to help him get thru it for a week or 2.. but if you want to come, let us know... company is welcome always.. thanks again all of you for wishes and checki ins and prayers... I will explain more about the transplant and recovery soon... Basically, the goal is for this to work... for Chris to make it thru the 4-5 weeks in the hospital.. but then they will be checking blood every few days for a few months... to make sure that his old bone marrow isnt sneaking back in.. we want his new bone marrow to take over permanently... that means it was successful.. but its gonna take 4-6 months to know we are headed in the right direction and about a year for recovery in general.. more to follow... xoxox jenn
Sunday Nov 30th
Chris and I woke up.. it was raining.. there was a bit of snow on the ground...
Today was the day we were going to get to the shore... He hadnt seen the water all summer...
Well Chris wanted to take me out for my birthday since he isnt going to be home for it..
So, we invite my parents and we take off...
Chris and I went to Rod's in Sea Girt for his birthday in april... so we go there again for mine...
Its still pouring.. My dad drops us off and I help Chris out of the car... to the side walk... and on the curb.... and he falls to his knee... ughhhh
Poor Chris.. it was pooring... i get him up.. my parents run over and we help him walk under the awning...
His knee hurts :( we slowly get up the stairs.. his pants are wet.. we are all a lil wet
Thank goodness I brought the oxycodone with me.. He pops 2... we have a very nice meal
Then, we leave, carefully and start driving towards spring lake... and we pull over by the water.. the waves are huge.. water is looking fierce... we pull over by a ramp and mini pavillion..
We get out of the car and help chris with the walker up the ramp to see the water closer... take a few pics... and after freezing, we get back in the car... more wet... but the heat is on and we are on our way home
We get home.. his knee feels awful... apply heating pad... take more oxy when he is due... and we hang out... Jeanie and Olivia visit for a lil while... Chris was very happy to see Liv... he wont see her til he is back home and he adores her... She is soo sweet... she asks how he is feeling when she comes in.... Eventually go upstairs to bed.. and neither of us want to go to bed..
Knowing what he is facing Monday, keeps Chris from wanting to sleep.. plus he is not tired...
We sleep .. but not much.. Chris was up a lot more than I was...
Monday is almost here... I will post beach pics as soon as I get them off Chris's phone
Today was the day we were going to get to the shore... He hadnt seen the water all summer...
Well Chris wanted to take me out for my birthday since he isnt going to be home for it..
So, we invite my parents and we take off...
Chris and I went to Rod's in Sea Girt for his birthday in april... so we go there again for mine...
Its still pouring.. My dad drops us off and I help Chris out of the car... to the side walk... and on the curb.... and he falls to his knee... ughhhh
Poor Chris.. it was pooring... i get him up.. my parents run over and we help him walk under the awning...
His knee hurts :( we slowly get up the stairs.. his pants are wet.. we are all a lil wet
Thank goodness I brought the oxycodone with me.. He pops 2... we have a very nice meal
Then, we leave, carefully and start driving towards spring lake... and we pull over by the water.. the waves are huge.. water is looking fierce... we pull over by a ramp and mini pavillion..
We get out of the car and help chris with the walker up the ramp to see the water closer... take a few pics... and after freezing, we get back in the car... more wet... but the heat is on and we are on our way home
We get home.. his knee feels awful... apply heating pad... take more oxy when he is due... and we hang out... Jeanie and Olivia visit for a lil while... Chris was very happy to see Liv... he wont see her til he is back home and he adores her... She is soo sweet... she asks how he is feeling when she comes in.... Eventually go upstairs to bed.. and neither of us want to go to bed..
Knowing what he is facing Monday, keeps Chris from wanting to sleep.. plus he is not tired...
We sleep .. but not much.. Chris was up a lot more than I was...
Monday is almost here... I will post beach pics as soon as I get them off Chris's phone
Sunday, November 30, 2008
Pics from Saturday (Visitors)
Chris- up close
Chris & Danny
Group in distance, Matt far right
Chris & his Dad (see where his brothers got the height from)
My mom, Gina, Laura, my bro Chris (me with Finkels in back)
Christine & Ben
Tommy & Dad Waxmonsky
Christine, Ben, Mike, Chris
Me, Gina's back, Christine, Ben, Mike, Laura
Chris & Danny
Mike
Group in distance, Matt far right
Christine is using her hands.. lol
Chris & his Dad (see where his brothers got the height from)
My mom, Gina, Laura, my bro Chris (me with Finkels in back)
Body Scans, Danyko Hat, A Baby, Visitors Oh My!
Thanksgiving was great... we ate.. we watched the Cowboys win... Chris and I watched "A Christmas Story" and all was good (it was the first time I ever saw it!)
Friday, we got to the hospital for his scheduled spinal tap and MRI. He went to same day medical and checked in. The MRI was to be with anastesia... and MRI was supposed to start at 1pm.. Ha!
I left when the spinal tap was starting. It was supposed to be back-to-back procedures... I went to JFK to get his barium for the next test. The Robert Wood nurses called to tell me he was in the MRI holding area... of course, I questioned why it wasnt starting... But i went back and Chris was still waiting. Anastesiologist hadnt gotten there. They finally took him after 3pm..
I went to the lobby to wait. It was a 1 hour scan and 1 hour in recovery... ha... After 6pm, I was able to go see him... His blood pressure was low and his heart rate high... but FINALLY we were able to leave a lil after 8pm...
Oh I forgot to mention, remember the doctor who Chris wasnt fond of? Her brain wasnt working... she didnt look comfortable with the spinal? yea... she wound up doing his spinal. Apparently, afterwards, the nurse was bullshitting with Chris and he thought the doctor had left and he was saying some "not so nice" stuff about the doc to the nurse... Then the nurse was like "um, she is still here" and the doc appeared... Chris felt bad but he told her why he was upset... and that was that... oops
We get home.. Chris has been walking better every day ... even the stairs are getting better... strength is getting better... just his knee is bothering him.. but he had a pre-existing knee issue... years ago, he had a pitella (spelling?) issue and had some work done on it... and it acts up when it is raining or cold or whatever..
We got home rested, etc... 4am (Saturday) Chris drank bottle 1 of the barium..
Then we went to bed again.. 7am I gave him necessary meds and no insulin. Pet scan required sugar under 200, and at 7am it was 119 so we did no insulin and no steroids.. we didnt want sugar to get too low, cus he isnt allowed to eat...
So, we go to JFK Imaging for 8am.. and the mammo/bone density receptionist is there.. the MRI girl is there. but the petscan person isnt there...
Dont get me started on how mad I am...
By 845am, the mammo girl gives Chris his barium bottle #2 to drink and a form for us to start..
Then the girl for petscan arrives with a trainee... walked in like she had nowhere to go..
Mind you, Chris has a walker and has gotten up a few times to prep for this test..
So, trainee and worker walk out in the lobby (behind us) and say "is anywhere here for a petscan?" and then when she sees us, she says "wanna come back and get registered?" all non-chalant.. ugh... so, I grab the cup, the barium bottle, the clipboard and my purse and help Chris walk to the registration room.... I wanted to yell.. but i didnt..
When we got back to the waiting room, I said outloud "maybe she should train the new girl to not be late.. we didnt want to be here at 8am for no reason" but i doubt they heard me... i will be writing a letter or calling
So, they took him in.. the petscan guy was sooo nice...
2 hours later he was done and they brought him out...
We went to get bagels and go home to rest
I made chris a dentist appt because they suggested to get a cleaning done before transplant..
So, I drove past a place near home the other day and made him an appt..
We got there and it was pretty simple... nice place... plasma tv above each dentist chair.. and they showed him his x-rays on it immediately after taking them...
he has 2 impacted wisdom teeth but no cavities (which is good for transplant)
We got home, ordered pizza and subs, and then Chris's dad and 3 brothers arrived (Matt, Danny, and Tommy)
Then my cousins Gina and Laura came...
And a little later, Christine Rabbath and Mike came with little Ben..
It was a busy but very good day for Chris
His fam brought Chris a singing fish.. its very funny
And, Gina brought Chris an autographed Danyko Devils hat.. He LOVE LOVES LOVES it.. one of Chris's fave Devils ever... He is so excited.. Gina hit the nail on the head. Her brother (my cousin) Eugene has a show on the MSG network and works with Danyko so he hooked her up...
He signed it "Keep Fighting"
Ben is adorable.. growing so fast... stood up on his own already... so close to walking...
We went upstairs to bed, and hung out for a bit... Sunday is Chris's last day home..
I will post pics of Saturday in a little while...
And, I will post more about Sunday and then Monday...
ttyl xoxox Jenn
Friday, we got to the hospital for his scheduled spinal tap and MRI. He went to same day medical and checked in. The MRI was to be with anastesia... and MRI was supposed to start at 1pm.. Ha!
I left when the spinal tap was starting. It was supposed to be back-to-back procedures... I went to JFK to get his barium for the next test. The Robert Wood nurses called to tell me he was in the MRI holding area... of course, I questioned why it wasnt starting... But i went back and Chris was still waiting. Anastesiologist hadnt gotten there. They finally took him after 3pm..
I went to the lobby to wait. It was a 1 hour scan and 1 hour in recovery... ha... After 6pm, I was able to go see him... His blood pressure was low and his heart rate high... but FINALLY we were able to leave a lil after 8pm...
Oh I forgot to mention, remember the doctor who Chris wasnt fond of? Her brain wasnt working... she didnt look comfortable with the spinal? yea... she wound up doing his spinal. Apparently, afterwards, the nurse was bullshitting with Chris and he thought the doctor had left and he was saying some "not so nice" stuff about the doc to the nurse... Then the nurse was like "um, she is still here" and the doc appeared... Chris felt bad but he told her why he was upset... and that was that... oops
We get home.. Chris has been walking better every day ... even the stairs are getting better... strength is getting better... just his knee is bothering him.. but he had a pre-existing knee issue... years ago, he had a pitella (spelling?) issue and had some work done on it... and it acts up when it is raining or cold or whatever..
We got home rested, etc... 4am (Saturday) Chris drank bottle 1 of the barium..
Then we went to bed again.. 7am I gave him necessary meds and no insulin. Pet scan required sugar under 200, and at 7am it was 119 so we did no insulin and no steroids.. we didnt want sugar to get too low, cus he isnt allowed to eat...
So, we go to JFK Imaging for 8am.. and the mammo/bone density receptionist is there.. the MRI girl is there. but the petscan person isnt there...
Dont get me started on how mad I am...
By 845am, the mammo girl gives Chris his barium bottle #2 to drink and a form for us to start..
Then the girl for petscan arrives with a trainee... walked in like she had nowhere to go..
Mind you, Chris has a walker and has gotten up a few times to prep for this test..
So, trainee and worker walk out in the lobby (behind us) and say "is anywhere here for a petscan?" and then when she sees us, she says "wanna come back and get registered?" all non-chalant.. ugh... so, I grab the cup, the barium bottle, the clipboard and my purse and help Chris walk to the registration room.... I wanted to yell.. but i didnt..
When we got back to the waiting room, I said outloud "maybe she should train the new girl to not be late.. we didnt want to be here at 8am for no reason" but i doubt they heard me... i will be writing a letter or calling
So, they took him in.. the petscan guy was sooo nice...
2 hours later he was done and they brought him out...
We went to get bagels and go home to rest
I made chris a dentist appt because they suggested to get a cleaning done before transplant..
So, I drove past a place near home the other day and made him an appt..
We got there and it was pretty simple... nice place... plasma tv above each dentist chair.. and they showed him his x-rays on it immediately after taking them...
he has 2 impacted wisdom teeth but no cavities (which is good for transplant)
We got home, ordered pizza and subs, and then Chris's dad and 3 brothers arrived (Matt, Danny, and Tommy)
Then my cousins Gina and Laura came...
And a little later, Christine Rabbath and Mike came with little Ben..
It was a busy but very good day for Chris
His fam brought Chris a singing fish.. its very funny
And, Gina brought Chris an autographed Danyko Devils hat.. He LOVE LOVES LOVES it.. one of Chris's fave Devils ever... He is so excited.. Gina hit the nail on the head. Her brother (my cousin) Eugene has a show on the MSG network and works with Danyko so he hooked her up...
He signed it "Keep Fighting"
Ben is adorable.. growing so fast... stood up on his own already... so close to walking...
We went upstairs to bed, and hung out for a bit... Sunday is Chris's last day home..
I will post pics of Saturday in a little while...
And, I will post more about Sunday and then Monday...
ttyl xoxox Jenn
Thursday, November 27, 2008
Transplant Scheduled- & Thanksgiving WIshes
Ok, so yesterday, Chris got a call from Jackie... The donor called back. They scheduled. And Chris is being admitted on Monday Dec 1st, pending Friday and Saturday scans...
This is good news, and overwhelming all at the same time...
It is an emotional, wonderful, scary time for Chris and for me, and for everyone around us
So, last night, we took a ride,,, got out of the house... Chris has been slowly walking up and down the stairs (with help) better and better... but after having his legs in a car for a few hours, he was beat last night...
Today, we will have a nice Thanksgiving... good cooking.. quiet day... maybe watch a classic Christmas movie.. and spend time together...
Tomorrow late morning and early afternoon will be taken up by spinal tap and MRI with anastesia... and then we rest... see how he feels
Saturday morning we have the petscan bright and early... and then we go home...
Chris' dad and brothers are probably coming at some point Saturday.. and maybe some others...
So, Sunday night, we will get a call from admitting about what time to arrive on Monday...
And, on Monday morning, Jackie and Dr Strair will be scrambling to find petscan results...
I am not sure exactly what they are looking for...
I know they want to make sure there is nothing like a fungus in his spinal fluid.. and check his spine and brain one last time... and petscan will show what current activity looks like compared to the activity (new leukemia activity) from pre-chemo 6-7 weeks ago
I suppose we will sorta celebrate my birthday on Sunday, but my best birthday present is having Chris's transplant scheduled this soon... Thats all I want -- Chris to get through all of this... best present I could ask for...
So, its Thanksgiving... and its time to be thankful.. and I am sooo thankful that I have Chris in my life... and I am thankful for God's blessings thus far... mostly the finding of exact match donors for Chris... and thankful his 23-yr old male donor has obviously been very quick to schedule and respond... We both thank all of you for your concern, thoughts, prayers, cards, help, gifts, gestures, etc... Friendship and family are so important... and we have very special friends and family... and at this time of our lives, we see how lucky and blessed we are... We have seen amazing gestures and kindness... and I want you all to know that we see it and appreciate it...
Thanks everyone. I pray that God is as close as possible to us at this time and the upcoming month. We need strength to get thru this last big hurdle... Bring on the new immune system, the new bone marrow, and "work" please ;)
HAPPY THANKSGIVING EVERYONE!!!! See some of you soon! xoxoxo Jenn
This is good news, and overwhelming all at the same time...
It is an emotional, wonderful, scary time for Chris and for me, and for everyone around us
So, last night, we took a ride,,, got out of the house... Chris has been slowly walking up and down the stairs (with help) better and better... but after having his legs in a car for a few hours, he was beat last night...
Today, we will have a nice Thanksgiving... good cooking.. quiet day... maybe watch a classic Christmas movie.. and spend time together...
Tomorrow late morning and early afternoon will be taken up by spinal tap and MRI with anastesia... and then we rest... see how he feels
Saturday morning we have the petscan bright and early... and then we go home...
Chris' dad and brothers are probably coming at some point Saturday.. and maybe some others...
So, Sunday night, we will get a call from admitting about what time to arrive on Monday...
And, on Monday morning, Jackie and Dr Strair will be scrambling to find petscan results...
I am not sure exactly what they are looking for...
I know they want to make sure there is nothing like a fungus in his spinal fluid.. and check his spine and brain one last time... and petscan will show what current activity looks like compared to the activity (new leukemia activity) from pre-chemo 6-7 weeks ago
I suppose we will sorta celebrate my birthday on Sunday, but my best birthday present is having Chris's transplant scheduled this soon... Thats all I want -- Chris to get through all of this... best present I could ask for...
So, its Thanksgiving... and its time to be thankful.. and I am sooo thankful that I have Chris in my life... and I am thankful for God's blessings thus far... mostly the finding of exact match donors for Chris... and thankful his 23-yr old male donor has obviously been very quick to schedule and respond... We both thank all of you for your concern, thoughts, prayers, cards, help, gifts, gestures, etc... Friendship and family are so important... and we have very special friends and family... and at this time of our lives, we see how lucky and blessed we are... We have seen amazing gestures and kindness... and I want you all to know that we see it and appreciate it...
Thanks everyone. I pray that God is as close as possible to us at this time and the upcoming month. We need strength to get thru this last big hurdle... Bring on the new immune system, the new bone marrow, and "work" please ;)
HAPPY THANKSGIVING EVERYONE!!!! See some of you soon! xoxoxo Jenn
Subscribe to:
Posts (Atom)
Posts
