photos from the last few weeks (of Chris's room)

Aunt Ro sent the firetruck and singing reindeer (or moose)

bulletin board in his room

Aunt Ro sent the Angel Snowmen decoration and you can also see cards he received...

view outside his hospital window when it snowed
Chaplain Sharon ran the Philly marathon and had our names on the back of her bib.. Chris wanted a photo of her from the race.. and she surprised him with one framed that she wrote on for him...

Chris when he was in ICU with the oxygen

Finkel Visit, Steroids Decreased, Oxygen Gone, Anxiety Arrives

Friday morning... Christmas is over :(
I slept like a rock... i woke up Friday and felt like I needed another 10 hours of sleep...
I went to get lunch with my dad-- then I was getting ready to leave and Chris called me!! I havent gotten a call from him in over a week.. he has been too out of it use his phone... He told me he ate breakfast (not just a boost) and he ordered lunch... however he told me he ordered chicken parm!! oooh boy
So I went to see Chris-- Vivian is his nurse... she took care of him back in June... and was super pregnant then... She had twins and is back now :) She is an awesome nurse... his lungs are getting better.. but they are distressed from all the fluid and inflamation he had for a week... slowly but surely they will heal... he really needs to use his spirometer that he hates... He wants to get out of bed but isnt allowed yet because of the weakness in his body... and breathing was so distressed... physical therapy needs to come and assess him before he is allowed to get into a chair.. annoying... he is tired of being on his butt.. and sitting up in a chair would be great for the lungs... He wants to sleep through his discomfort.. He is not happy that he cannot have dilaudid...
Vivian had talked to him about ambien for the night, to help sleep.. and I reminded him that he had Xanex on order... they gave it to him monday when he had a restless day before getting transferred to ICU
Anyways, his food comes.. he eats some chicken parm and Coke.. and he threw it up.. He realized it wasnt a good food choice.. his belly hasnt eaten in 3 weeks.. its not ready for sauce... so he ate pretzels and that was much better... Boost too
Doctors said he had ativan on order for sleep, as well as Benedryl and Xanex.. the anti-nausia meds also help with sleep
Christine Rabbath came to visit.. she brought cookies for Chris and Christmas gifts... Chris loved it... Devils shirt .. he was pretty sleepy but big grin appeared when he saw the Devils shirt.. and Starbucks ornament ;) I got a matching one from them... yay! After visiting with Chris, Mike picked Christine and I up... he was driving Ben around for a nap while Christine was up visiting Chris...
They took me out to dinner... Ben is so adorable... awwww
Sophie came on for the night shift... Love her too.. she is so sweet
She takes really great care of Chris....
Anyways, Chris just wanted to sleep.. got his Ativan... and I hung out for a bit... was gonna leave soon
Then, I went out in the hall and saw Dr Sadov... Chris loves him... he wanted to come in and see Chris.... so I talked to him about Chris's progress and he said Chris was doing much better than earlier in the week. He said he was scared on Monday ... but Chris was doing so much better now
We go into the room, and Chris was in serious pain.. he had an IV in his arm (in addition to the pic line) and it was super painful all of a sudden...
Dr Sadov talked to him.. Chris said he wanted to rip the arm off.... so Sophie came in and Dr Sadov went outside to order some pain meds...
In the meantime, Will came in to help Sophie (Will is a tech) and Dr Sadov walks in saying "I ordered some Dilaudid prn for him for the pain" sophie, will, and I all turned and looked at the doc like he was crazy... Poor Dr Sadov had no idea that dilaudid was taken off the orders because it made Chris hallucinate...
So then he understood while we all looked at him like that.
He remembered that morphine didnt work for Chris but that was when he had painful sore throat... so he ordered that
I went back in the room, Sophie had already taken the IV out and it was a little better
Then we gave him a hot compress... Chris fell asleep.. didnt even need pain meds
I said goodnight and went home

Saturday morning, I woke up and cleaned up a bit at home... eventually got myself together and went to see Chris..
I get there and Vivian tells me he is medically doing fine.. but emotionally rough day... he wants to go home :(
So I went in and Chris told me he wants to go home... I gave him a pep talk... yadi yadi.. reminded him of why he is there and that he is getting close to going home
He said his eye and not being able to see well is killing him.. I feel so bad for him
that must suck
He is saying he can get his meds home and recover there ;(
we talk and he is better... he was even throwing some things around today...
His oxygen is gone!! no more tube in his nose... he is breathing much better
He ate some food and stuff today
Diareaha is less today so far... steroids are still decreased...
Vivian is awesome.. she was encouraging him and I love her
he is in his beer hawaiian shirt that Dana and Chris Cullen gave him... he looks so much more like himself
He seems better
My parents came to visit... they are so happy to see how much better he looks
Then i went to dinner with them and they dropped me back off
I will be here for a while tonight.. but he is sleeping.. so thats good
Physical Therapy came today and they said they will work with him more on Monday...
I talked to a guy in the hallway.. his wife had a transplant and she went home on Day 10.... 12 Days later she was back in the hospital.. thats when her graft vs host came on.. and she has been here for 2 weeks
Chris is at Day 16... Tomorrow is Day 17... he engrafted fast.. and his GVHD came quick
Hopefully he continues to improve and gets his physical therapy going on Monday... he wants to get in a chair so bad.. and he wants his eyes to work :(
Tomorrow Chris's dad and brothers are coming down to visit... so that will be very nice... that makes Chris happy... and then Jeanie is coming at night to hang...
Thanks cousin Jen for the Christmas card...
talk to you all later
xoxox Jenn

Re-Cap of the last week (including the complications beginning)

Ok... its been a busy week... and I havent blogged in a while... so I am going to try to make this as short as possible...

Wednesday Dec 17th - Chris was feeling ok except for very sore throat & throwing up everytime he drinks anything.. I think I came to see him during lunch... After work, me & mom went to Kohls to finish Christmas shopping.. then I came here to spend the night with him...
Thursday Dec 18th- I left from the hospital in the morning.. went home and got ready for work. Went to work holiday party at 2pm and had a few drinks (havent been drinking in a very very long time) so I shopped in the mall with a few co-workers for an hour and went home to shower & went back to the hospital
Friday Dec 19th- Chris is still having sore throat very bad... still not eating... I stayed over at the hospital.. icey roads... my brother was out for his birthday but I didnt join him cus i didnt want to drive...

Saturday Dec 19th my parents came to visit and I was at the hospital til the afternoon. Then I went home and to dinner with Christine Rapach for sushi.. yummo... then came back to the hospital to hang with Chris...

Sunday Dec 20th, Chris's counts were back up... his white count was good and was no longer neutropenic. Rose was Chris's nurse all weekend
Because his white count was up, he no longer needs us to wear a mask in the room.. but we still need the gown because he is c-diff positive... they try to prevent us from bringing it into the hallway...
Also, his sore throat is finally getting better because his counts are better. Sunday was only day 10 so it was kinda early for his counts to be up.. but not too early
Also, on Sunday, he was having trouble breathing - pulse ox was low... gave him oxygen...
Oh also, when I got there Sunday, Chris told me he was having trouble seeing... he sees a spot when he looks out of his left eye.. that was his stronger eye... his eyeglass prescription was because his right eye is lazy and weaker... so now he is upset.. but they dont send an optomologist today

Monday is when things started getting crazy...
Breathing was not better Monday... I saw him in the morning briefly.. and then I came at lunch. I get there and Nancy stops me to tell me he had gotten up on his own to go to the bathroom and he also accidentally pulled his triple lumen out of his neck (the port where the 3 tubes are)
ughhh.. She tells me to tell him not to get up on his own but i know there are only 2 reasons he would do that.. He does not want to disobey but he either gives up on waiting when he calls... or, in this case, he had so many drugs in him, that he didnt know what he was doing... Chris is stubborn but he knows he doesnt want to fall....

So I get in the room and Liz the nurse is in there and Chris is in the recliner, clearly not himself... he can barely explain to me how anything happened... My heart is breaking seeing this... I guess because he was so out of it and pulled his tubes out and took an uneasy walk to the bathroom, he got very upset and anxious so they gave him ativan and xanex...he was taking the oxygen off his nose and putting it on his head... he was super restless.. saying crazy crazy things.. I was crying.. i couldnt help it because he was trying to get up... almost yelling at me (somehow he knew my name when he was being told by me not to get up) and anyways.. they were talking about getting him one-on-one care while he was going thru this...
They told me they started him on steroids for the inflamed liver and lungs... also has fluid .. Dr Strair stops in to see him and Chris worships Dr Strair... would kiss the ground he walks on... and this is when I knew he had really lost it from the drugs... Chris was taking the oxygen off and putting it in his mouth... Dr Strair and I were telling him to put it in his nose and Chris said "I want to see what this cool toy can do" He would NEVER say that to Strair if he knew what he was saying.... I just felt so helpless...

So, I go back to work and finish up and then go to the hospital... well.. i stopped home to shower cus i wasnt sure what the night would entail
On my way home, Dr Biren (doc on duty this month)calls to update me...
they are concerned about breathing and they are having ICU evaluate him...

I get there and there are no beds in MICU so they are sending him to SICU... where they are mostly open heart surgery patients... ugh
My dad came with me because i know from last month that ICU doesnt like you to bring a lot of stuff with you.. my dad helps me pack up his clothes, decorations, laptop, etc... and he brought it all home for me.. while we were packing, Dr Park, the eye doctor comes... he told me there is bleeding in his eye from the leukemia... it just became symptomatic.. Doctor is pretty sure the bleeding has been there for a while... its either because of the leukemia or possibly leukemia in the eye... they dont treat it.. they treat the cause.. and thats what we are doing.. a transplant to fix the leukemia.. the hope is that as transplant kicks in and he gets better, the bleeding will resolve itself

poor guy just has no idea whats going on... Kristen the CCT was sitting with him for the last few hours and followed to SICU
We get him settled in SICU (I had to wait in the waiting area... thank goodness Will came down and saw me sitting waiting still.. he got me in faster)
Kristen told me his nurse was a tough one... she came in and told Chris he wasnt in bone marrow any more and better stop playing with his oxygen or she will have to tie him down... WOW... he is sooo claustrophobic... not cool
So Kristen and I talked for the next few hours until her shift was over and it was time for me to go home and leave SICU

Oh Dr Strair had mentioned that the dilaudid was staying in him for 8 hours or so because his liver isnt processing as fast as normal... thats why he is acting so weird.. on top of all the other drugs and the steroids apparently cause steroid psychosis... it is not recommended that he get dilaudid if he can avoid it...

Tuesday i call the SICU nurse and she tells me he is doing ok... breathing is not worse... and I went to see him at lunch... he had just had a bowel movement... He is so out of it... but better than the day before...
I went upstairs to talk to Dr Biren because the oncologists are not in SICU... and the SICU nurse had no clue what was going on with him.. they did an ultrasound of his body for clots.. they did an EEG.. and a catcan of head and the nurse had no indication of results or what was being said
So, Dr Biren sat down with me (luckily I found him) and explained to me that they were happy that they didnt have to intibate him... breathing didnt get worse... counts were going up... cells were engrafted... liver enzymes were going down a bit (getting better) and the concern was that he started with a large amount of diareaha that day..if it is acute graft vs host disease (GVHD) then the steroids would be the med to try and they started them monday... colonoscopy would be done next day, wednesday, to check...
So I go back to work.. I am freaking out because i am scared naturally... and I know that too much gvhd is not good... but a little is good and desired... gvhd is a good indicater that there is probably gvl (graft vs leukemia)
I asked Dr Biren about that and he said yes a lil is good.. but a lot is just a lot harder to control... treatable.. but complicated when there are multiple things (rejections, i guess) going on... He said this is when Dr Strair would be walking the "tightrope" balancing the anti-rejection med dosages and the meds and steroids and all that...
Well, Aunt Ro called Dr Strair and he basically explained that A) the transplant "worked" as far as engraftment.. the cells took.. thats good... but B) in addition to the lungs, the steroids should be taking care of his GI Tract... and should take care of it within 3 days... so its now a waiting game.. if the steroids dont work, it would be considered "steroid resistant graft vs host"
this whole process gets harder and harder even though in some ways its easier because i am used to so much of this crap...
I remember the constant diareaha he had last month from chemo and septic infection and I am a mess...
I get to the hospital Tuesday after work and the nurse is excited.. he is himself.. talking... hadnt had diareaha in 6 hours...lungs sound better.. woohoo.. May is his nurse.. very very sweet... liked her a lot... she was like a nurse coach... excited for him...
I stay til 7pm when ICU kicks you out for change of shift..
I run upstairs to see 4North nurses.. Nancy gives me a hug... I see Sharon the chaplin who is AWESOME... she had called me earlier to let me know she saw Chris.. but she is on vacation for a week starting Christmas :( but we text... its a great support i tell you...
ok, wait.. no.. I saw Sharon at lunch.. I saw Nancy at 7pm.. but whatever...
I ran upstairs to see the 5North Nurses... Mary ran over to see me.. Kachi gave me a hug.. Ade was asking about Chris.. they love him and i updated them all
Then Christine Rapach met me for dinner.. we went to Stuff Yer Face... yummoo... martini and stromboli.. doesnt get any better
I went back and Christine came with me to see Chris... he was a lil silly.. but pretty with it... still no bowel movement... lungs sound better.. and they are moving him to MICU-- Astrid is his nurse... he is so with it now that he remembers her from JFK ICU back in early June... he remembered her being prego and whatnot
Lauren is his nurse in MICU for the night.. she is nice... they still havent given Chris a pic line.. they are still using IV to give him all his meds.. i stay til 12midnight or so and go home

Christmas Eve Wednesday comes and I call the hospital MICU... nurse Andrew tells me still no bowel movement and lungs are better...
I get there at 2pm and he is talking to me.. all looks good... Dr Zho comes (the fellow) and says his lungs are getting better.. the liver counts are coming up.. the other counts are coming up... Oh, they did a sigmoidoscopy in the morning... Chris tells me it was terribly painful.. sorta like a colonoscopy but they blow you up inside a bit.. take a piece of intestines (I think) and they did it bedside..
my mom said she had one years ago and it was worse than labor...
I leave to go home when ICU kicks you out -- had dinner at home.. went back with mom and Chris is out cold... nurse tells me she gave him dilaudid.. ughhhhh... he can barely wake up.. isnt himself... mom was so bummed cus she heard him on the phone earlier how great he sounded... nurse wasnt aware that it made him so hallucinative and out of it...
I talked to the doctor and she took the order out of the computer.. he shouldnt have that unless he gets really bad pain.
his breathing looks great... only thing is that the nurse said he had a bowel movement at 730pm.. so after none for 36 hours, he had one..
I have no idea what that means in terms of the graft vs host and whether steroids are working.. if one bowel movement a day is ok.. if its bad...
However, as you recall, he had been throwing up every drink for weeks... he has been drinking water and gaterade for 3 days and not throwing up
We let Chris sleep..
I come back from speaking with doc, and Dr Dodzie sees me (the young hot black sexy doctor, as he called himself in the summer)... he is a resident and he was on in the ICU.. he gives me a hug and i turn around and see Tanya - one of our fave night nurses..... hugs all around.. she came to see chris.. i tell her about the dilaudid and she knows immediately what that does to him.. I fill Dodzie in on the last 6 weeks and they tell me what a fighter he is... blah blah blah..
Tanya meets my mom.. and then tells me she will be back friday and the whole weekend i think...
we leave and go home after 1130pm
I feel so bad at this point cus i am getting so many texts and calls.. havent updated the blog but i am so tired
I am so happy i am off til january 2nd

Christmas morning, i call the nurse before church and Andrew tells me they are moving him back to bone marrow.. he had one bowel movement in the morning..
lungs are better...
I exchange presents with parents and go to hospital
Then parents and brother come after 3 and are here for his transfer to the bone marrow unit...
He is so uncomfortable.. but the lungs are clear, but distressed..
however, they expect them to be distressed..
he threw up some liquid tonight but he is so congested all of a sudden and is saying its not nausia gagging its super dry mouth and (sorry for the TMI) but its boogers in his nasal passageways making him gag.. he is so thirsty
he can eat but isnt ready for more than boost yet.. maybe tomorrow

i am going home. its after 1030pm.. and i need rest.. he is sleeping and happy he doesnt have pain..
his biggest frustration is his eye and the dry mouth and congestion
I am hoping that although he is diareahing 1-2 times a day, that its not as bad as they were worried about.. overall, he seems better
the pulse ox actually stayed up at 93 without his oxygen on for 7 minutes or so.. he blew his nose.. i think it helped

thats all for now. oh. we got a very nice package from Aunt Ro in the mail with gifts and decorations.. did i mention that last week? Grandma peters and waxmonsky both sent cards and gifts.... he got cards from Jen & Lew, ROnnie & Gary and family and the Finkels plus cards from all my friends as normal.. Chris liked seeing pics of Ben and Liv and all the cousins and friends' babies...i feel like i am forgetting something or someone.. but when i remember i will update
love youall.. merry christmas
Jenn

We Are Done With Day "PLUS 5"

Well, we have been in the hospital for 15 days now...
Its been 5 days since Chris got the new stem cells...

And, Its been 5 days since I wrote on the blog... but I am sure most of you took 5 days to read my last blog.. so its ok

Chris's nausia has continued now since Dec 7th or so.. The vomiting has been going on since Dec 9th-ish... but its once or twice a day and only bile because he isnt eating...
There are 4 different anti-nausia meds... and they keep him somewhat comfortable..
The diareaha started Friday or Saturday and its not more than a couple times a day.. sometimes once...

Sunday his throat started hurting and since then, its been his biggest complaint...
He had been having stomach cramps since the vomiting started.. and the pain was controlled by the pain meds.. but now with the sore throat, he is miserable...

A few times he has mentioned that if it werent for the sore throat, he would feel "OK" - relatively speaking of course

They totally expect sore throat (all the way down throat and esophogas, entire tract), they expect mouth sore, fevers, nausia, etc...
This is all from the chemo. The chemo he got bottoms you out and empties you for the new bone marrow.. therefore he has lost cells in his body (in the mouth, everywhere) which would normally protect, coat, etc... so he is miserable, but "normal". They give him special grade 3 mouthwash a few times a day, and then every 6 hours he can have lanocane (spelling) to help numb the throat.. but its doesnt work too great..
Today they gave him a spray cloraseptic which he says gives him some temporary relief...
Because of the nausia and pain from swallowing, all his meds are IV--- not orally...
There are so many incompatibilities with the meds that they have to run them all separeately, or a lot of them anyways, and it uses up all his pumps so his TPN (liquid nutrients) dont get to run as much as they could...

They tried a morphine drip on Sunday which he was controling as needed.. but it barely took the edge off with the tummy pain... and they stopped it and went back to dilaudid prn (as needed, every 3 hours)

On the weekend, he was pretty alert... the mouth pain wasnt bad yet... and his ativan and dilaudid was at a minimum,.. but he is drugged up again and doesnt even hear his phone ring...

Dr Weinstein and Dr Hart from Infectious Disease are on the case... making sure they do everything possible to prevent and treat infection... I met Dr Weinstein yesterday (monday) on my lunch break when I came to see Chris... I knew he was Dr Partridge's dad (his plastic surgeon from finger and thigh biopsy) and boy, now i know where she gets her awesome personality and brilliance from.. her dad is just as wonderful.. what a great family...

Monday they found out that he is c-diff positive... its a very common bacteria that patients like him get (they tested the stool) so now he cannot get immodium until that is cleared up... They test for that always after diareaha starts... we have been thru this twice before. this is the 1st time he was positive...
luckily he is only going a couple times a day...

Up until tonight, he hasnt had any fevers.. Tonight they did cultures because he spiked a 100.8 temp... it broke 2 hours later

Anne, the nurse practitioner who rounds everyday with the docs, said in about 1 week (next Tuesday) we should see counts come back up... Once that happens, the white counts will start fixing his sore throat and whatnot.. and he should start feeling better... then it should be time when they see engraftment (new bone marrow taking over his body.. ) and we will see how that goes... we could run into complications or bad side effects...
this is when we want to see some graft vs host disease, meaning that the new marrow is noticing differences and indicates good chance its noticing the leukemia in his body and attacking... we could see graft vs host next week, not until a month from now... not at all.. and also could be very very bad (why the transplant is so risky) and we could see it continue at a chronic level for 1 year.. 2 years.. even 3..
Its a pretty good chance that we will see some graft vs host (GVHD) because the donor was unrelated
But, we dont want anything too acute... thats bad
It could show up as rash (they would biopsy for GVHD), diareaha, lung/breathing issues, liver (check the enzymes for GVHD) etc...
So, when his counts are up and things look good, he can go home.. but then the 2-3 times per week appointments start.... and blood tests happen for months...
They continue checking his blood to make sure its still the donor's and we take it from there...
but back to today, we are still waiting to see engraftment next week... and pray he doesnt have rejection

Friday, nancy was off so Rose was his nurse... She made me feel sooooo bad that morning. I had been at the hospital with Chris all day Thursday for his transplant and on Friday morning I had to go to work and she was like "awww you have to leave?" and she went on and on asking when i would be back.. yea, try not to make the loved one so upset please

Friday night Tanya and Isabel and crew were back on. Isabel was his nurse and all was good in the hood... Nancy came back Saturday and was Chris's nurse on Sat, Sun, and Monday... Sunday night and Monday night he had Myrle... and Tuesday (today) we had Melissa (YAY!) Tonight Isabel is back.. and TOmorrow Melissa will be back
Nancy comes back Thursday... She takes such good care of him... He has lucked out with the best nurses since Wednesday...

Chris is concerned that he will get the nurse that makes him uncomfortable and wanted me to talk to the head nurse about it. Remember, I asked Mary Kate for Nancy and we didnt get her for transplant day or the other day she was here after I talked to Mary Kate. Well, when I saw Mary Kate yesterday there were a lot of nurses around.
So, Chris was going to ask to talk to Mary Kate. Anyways, he asked for her yesterday, she stopped in and Chris told her he needed to talk to her about his nursing needs and she said she was in the middle of 5 things and would be back...

No mouth sores yet.. but he might get them soon.. or maybe just have the really sore throat til counts go up

One of our fave nurses Tanya is pregnant.. I feel like these nurses are our family... Its a very special experience

My parents and brother visted a bunch of times ... I squeezed in a haircut on Saturday... she went scissor happy and cut too much...
oh well.. I still need highlights.. I got a pedicure with mom Sunday morning and was supposed to do lunch with Christine Rabbath but by the time i waited for my mom to be ready and me get back to hospital for lunch with christine... i fell asleep at home and then it was late... but we will reschedule

Chris's bro Lew and Jen are getting married September 26th of next year... We got the save the date ;) Grandma Phyllis sent Chris and I a Christmas package... stockings and prayer cards and slippers for Chris and a nice musical santa for me...
Chris got his Grandma Peter's Chritmas gift in the mail too... Its fun being Santa and bringing CHris's mail and packages to the hospital

I should go home soon... I went to Walmart at lunch and got Christmas shopping majorly accomplished... Today, I got done with Ben, Olivia, Jeanie, half of Christine and Mike, part of my Chris and a few others (not all at Walmart) All I have left is my parents, rest of Chris, my Godson, and a few odds and ends... I think... I have to look at my list again... But today was a big dent in the list
Tonight I have to finish my Christmas cards.. i brought them with me here and havent done much :(
gotta get those in the mail tomorrow

Its 1130pm and Chris is alert suddenly
I am dreading driving home in the icey snowy weather.. i dealt with it at lunch for shopping.. hail and rainy snow... ugh

I havent even done Christmas oookie baking ...

I have to find time to deep clean the bedroom and bathroom at home... things are supposed to be super clean and sanatized for 3 months for Chris.. I have to get Rex's litter box moved... chris shouldnt be near it.. its currently in the bathroom... and i have to get the maniac's nails cut (Rex)... he launches himself on my shoulder everytime I come home and its hurting more these days...

I am really looking forward to my Christmas week off... I need it... so tired

My boss has been very understanding and flexible with my time. I come here when important things happen here and work from here, late at night to catch up from home, and weekends sometimes and I am so lucky to have that flexibility right now...

I dont think I have much more for ya'll tonight.. I have pics to post from transplant... talk to ya all soon

xoxox Jenn

The New Stem Cells Have Been Transplanted...& Jenn Vents

Well, I didnt sleep much last night... too much on my mind... i woke up at 4 and 5 and 6am...
then... i woke up at 7am!!! Ooops... And I was planning on being at the hospital by 8

I showered and then i logged in to work computer from home and did some work and got to the hospital by 10

When i was on my way to the hospital I called chris and he said he didnt know what time the transplant would be but that it would be in the late morning...

I got to the hospital and I see Sharon on my way in - She tells me that the transplant will be at 11. Chris was sleeping but she would be back. I walk back down the hall towards Chris's room and I see that Nancy is not his nurse :( Luckily, it was Valsa, who Chris and I like... but I was worried Chris would be upset... Now, I know I have been very stressed and anxious and worried and all that.. and sometimes I am not sure if its that or if I have a legitimate concern. Its hard to tell sometimes because when something bothers me at the hospital, it gets me very upset and I cannot tell if I am overreacting because of being stressed already OR if its really something that should bother me...
Anyways....
Nancy tells me that his transplant will be at 11... and asks if i knew.. i only knew because sharon just told me... Maybe Chris knew and didnt remember.. but all he told me on the phone was that they estimated late morning..

So, now I am confused because the biggest reason I was given for not being able to request a certain nurse was that there are so many pregnant nurses on the floor and they cannot do chemo. Chris is not getting chemo... so if there are too many prego nurses on today, he would get a prego nurse if they need Nancy right? yea.. WRONG... i dont see any prego nurses... besides the head nurse Mary Kate... and I dont mean to sound like a complaining bitch but we dont ever ask for favors... I love most of the nurses, so not having Nancy isnt the most awful thing... She is great.. she checks on him regardless... but....
and I feel bad writing this.. because i know Chris offered this blog to 2 of our favorite nurses.. but i dont know who else now reads this blog and i dont want to offend anyone or talk badly about anyone.. but it is what it is..
This site is to share Chris's journey for everyone to read and to share our experience... so I am gonna just be honest.. although its been bothering me all day as to what i would say on here
I guess I am just wondering why, if I am asking for a certain nurse, and its going to be hard to give her to Chris, why wouldnt you ask me more questions? Dont you want to know what about the other nurses isnt satisfactory? but maybe its my fault for not throwing anyone under the bus... Maybe I would have to go to the head nurse and complain about every little thing that goes wrong in order to not have certain nurses...

There is one day nurse that I know Chris is not comfortable with... she is not proactive... i feel like she doesnt understand me sometimes... i have caught her not giving the correct info to the night nurse or slacking on stuff... and it bothers me... on top of it, chris gets annoyed with her too... so thank goodness she wasnt his nurse today... Most of the nurses are wonderful.. it feels comfortable walking into the bone marrow unit because we have known them for so long now.. but as amazing as i say they are, it bothers me when things go wrong...

So.. when I got into Chris's room today, he was in the recliner.. which is great.. and he is still nausious... Not 10 minutes into me being in there, Chris is asking me for a bin.. he is going to throw up... Well I look around and see no bin near him... there are bins near the door with gauzes and meds and syringes in them.. so I grab the garbage can and bring it to him...
I dont know if I am overreacting or not, but now I am pissed... why on earth would you help Chris move to the chair, knowing he has vomited 3-4 times in 3 days and been nausious and not put a basin near him??? I cannot help but think "what if i wasnt there?" I know damn well that if he had to press the call button for a basin, he woulda thrown up all over himself..... On Tuesday, I was on my way there, and I was on the phone with him, and he had called the nurses 2 times asking for a urinal... It blows my mind that he uses them, they get emptied, and then they arent always put back near him... and he isnt allowed to get up alone!!! I talked to him for 10 minutes... 3 times he called.. I hung up with him.. i got there and Will the CCT told me that Anne found him getting up himself to get the urinal.... and was telling him not to... Welllll... what is he supposed to do? wet himself? no 28 year old wants to pee in his pants.. he isnt 80... and he wasnt the moron who took all the urinals away from him.. i just dont get it... Patient not allowed to get out of bed alone.. uses urinal … LEAVE THE URINAL BY THE BED WHEN YOU EMPTY THEM

So, as you can imagine, on top of being stressed because although I am sleeping at home and am pretty well rested, I am emotionally tired and scared and worried because of what my fiance is going through.. Then i walk in to see Nancy isnt his nurse, Mary Kate isnt his nurse, he woulda thrown up on himself if i wasnt there, and my Xanex has obviously not kicked in...

I step out of the room and see Nancy so I told her he was vomiting... and when she came in, she brought the new anti-nausia that they gave him yesterday evening...
Now, last night, it seemed to work, he nibbled on dinner and didnt throw up last night
However, no one gave it to him all night... why? i dont know… Nancy told me it wasn’t ordered like it was supposed to be.. so it wasn’t the nurse’s fault
So, poor Nancy, she took care of Chris in the post-vomit moments... and i think i had a bit of an attitude when she went to get the basin, i commented on no one putting it near him.. but come on... ugh

Anyways, Sharon came back over... she wanted to be there for transplant.. well, we wanted her there too :) and Dr Zho and Anne and Dr Biren.. cant remember his last name all came to see him... they noticed his slurred speech and i told them he has been very sleepy, out of it, slurred, mumbling, etc.. and they feel its the drugs... suggested giving less ativan... i dont know what to do.. they ask him things and he looks like he isnt listening or doesnt want to answer... i give them my 2 sense.. but i am sure they know why he is delayed with responding... or understand
Last night, Dr Biren stopped in to check on him and Chris was so quiet and out of it... i told him he got some food down and chris told him was very tired...
After he left, I said something to Chris and he was like "oh i love that doctor" lol i wouldnt have known from the response he gave him... hahah
Today, Chris told the team that the combo of ativan and the new stuff works… this was after Anne suggested cutting back on the Ativan.. Chris tells the doctors something is working but he only got the new stuff once… and they want him a little less sedated… I want him to try the new stuff without the ativan.. and there he is asking for it again… it’s a tough balance.. they want him to be up as much as he can.. and he is so nauseous that he wants to get the ativan.. some nurses say Sleep through it.. others are like ohhh why are you so sleepy? Lets not do ativan til night…lol

So, Chris was getting pre-medicated for the transplant.at 1030am today… Now, he is extra sleepy... and is feeling miserable and nausius... they dont want to give him ativan til after the transplant

The stem cells arrive... YAY!! they come in a cooler... like a construction worker's lunch cooler... and they look like red blood.. the donor is Blood Type "O Positive" so Chris will be too one day soon... they take his vitals every 15 minutes during the infustion... all is good... and they give him ativan..

Dr Harrison stops by... he makes faces in the window... we havent seen him since end of november... (the German speaking crazy doc that we love) So, Chris lights up when he sees him.. he comes in and says (while looking at the stem cell bag) "Ohh you are getting a brain transplant" lol he cracks us up... He goes on to say "and its a surgeon's brain.. you know what that is good?... cus its never been used..." he then sayd "well atleast we no longer have to worry about getting you to transplant" and he is so right..
I was having nightmares about the donor's stem cells being on a helicopter and crashing.... no more worry about that...

FInally, Sharon can pray with us and we just hang.. i do some work for work... and Chris is nausius.. doesnt eat all day

his basin had been sitting all morning with bile in it.. so i decided to rinse it out... these are the little things that are bothering me... I love chris to death and will clean his vomit at home forever if i have to.. but i am here for emotional support and i am cleaning his basin... jumping up to get him a basin... i dont get it... i am there for him.. i am not paid by robert wood... after the morning i already experienced, i wasnt happy.... it bothers me... and i dont know why.. if nancy asked me to clean his basin I would have been happy to.. but that’s cus she treats chris like her son.. and I love her

I was always a very even-tempered person.. takes a lot to bother me.. i always do for others.. over generous.. etc... so this is weird for me to be so upset and reactive.. but i guuess when you love someone so much you get protective.. i have learned this... and watch out when we have kids... lol.. but anyways...

Lets not forget that Chris had a bad experience with one doctor a few months ago and i asked 2 doctors, called jackie, a nurse called the doc, etc... and you know he wound up having to have her again for a spinal... we were told we are completely entitled to not have a doctor treat him if he isnt comfortable... soooo again... we barely cause waves, and when we do, nothing happens.. its really disappointing.. and again, today was ok... he didnt get the nurse he doesnt like.. but it makes me realize he very well could have...
Nancy ran into me in the hall and said she wished she had him and i told her we asked.. she said (i think this is what she said) that others have asked too.. and apparently it makes some nurses feel bad...
She went on to tell me that she still checks on him and helps out even when he isnt hers... but some nurses don’t like when she does that… She was the one who called pediatrics yesterday and got them to try a new anti-nausia drug… So I said :”I don’t care if the other nurses don’t like it.. atleast she is helping and looking out for him… other nurses barely do that they are supposed to… they give the drugs .. they don’t always pay attention to if he takes them.. they forget to do the wound dressing unless I remind them…he has issues and they don’t call the doc… etc etc.. Nancy I know does.. and other good nurses do… So maybe if so many patients are requesting Nancy, it should say something to the director.. get the other nurses to get their act together… I don’t know.. its not fair that we all cant get the care that Nancy and Isabel and Tanya and Melissa provide… I will stop there… cus if I name them all it will be obvious who I am not naming
And although I am the one venting here.. Chris makes it very clear to me when nurses annoy or upset him and I know it ruins his day.. and it makes me feel like I cant leave … Now, over the next 1-2 weeks chris can have all sorts of complications from the transplant and I guess if he gets really sick, that’s when I want nancy and Melissa and Liz taking care of him during the day… but I almost feel like I have to tell them who chris doesn’t like or want to be his nurse to prevent him from being miserable

Oh Dr Strair stopped by and said hi.. he is back from conference…. And will be back tomorrow… he told chris so far so good… “another 2 weeks before you can go home” now that’s a loaded sentence.. obviously he has to have counts go up and avoid major complications.. but lets pray for a discharge by new years eve… I have to ask for more prayers, right? Lol… Chris loved seeing him too.. Dr Strair and Harrison make him light up.. its cute

Ok, so enough about all of that… I finally ordered my Christmas cards yesterday.. I have been meaning to write out regular ones for weeks, but I cant even get through chris’s mail, bills, and my work I take home before falling asleep, so I ordered them from Shutterfly.. I cant wait…I love writing addresses and making them personal. But I think everyone will understand I don’t have time for much personalization this year…

Speaking of mail and bills.. I have to really get all his bills organized.. they keep piling up.. I have to call all sorts of radiology, urology, RWJUH, JFK, etc etc to talk about payment plans.. although he has no money for all these balances… and then there is my own bills… my poor dentist finally got paid after almost a year… I just have no time for any of that… and chris’s long term disability wont start for another few months cus he hasn’t even done the interview yet.. I need a secretary… and I have to get Rex’s nails cut… I need a genie (in a bottle) maybe…
Or a chauffer… something.. a maid maybe.. my poor mom is doing our laundry cus I am never home and she has been working 630am to 430pm most days… on top of her back and neck and joint pains... ugh... when its all over maybe I need to write to Ellen and Oprah to do something for my parents.. or Exteme Makeover home edition....
Boy.. what a venting session this has become.. but who else can I talk to?
Chris is sleeping… its after 11pm… my coworkers are so patient.. they listen to be complain and vent and bullshit about the hospital and everything all the time…

OK, so Chris is still nauseous… he has pills to take… he threw up bile again tonight.. a little while ago… the tech came in for vitals... basin still on chris's lap... he asks for it to be moved.. the nurse was in here.. so i get up from doing work and take the basin.. rinse it out... i guess when they see a basin of bile on your lap, they dont think they have to rinse it out or anything.. maybe i am nuts
One pill is important for transplant and another is the anti-seizure.. the 7 others are just stuff he takes everyday…
Nurse asked doc to switch over to IV drugs and they said no.. they want him to see if he feels better after more anti nausea meds..
But.. hello.. here we go again.. he hasn’t felt better all day.. hasn’t eaten.. threw up… yea… and I need to go home
And the nurses say “tomorrow when the doctors come, talk to them about TPN and his nausea and blah blah blah..” I AM NOT HERE TOMORROW.. CHRIS SLEEPS THRU EVERYTHING… what do I have to do to get the right stuff discussed if I am not here? Shoot me please…he says things incorrectly sometimes… or forgets…. Or is too sleepy to express his symptoms… ugh….

I got texts and calls and emails from bethann, lori, dana, Christine, Christine, jeanie, matt, Shannon, Rebecca, Lauren, aunt ro, aunt cathy, my bro, my parents, tommy, gina, eileen, ronnie, and others today.. and I am sorry if I didn’t reply or dropped off in mid converstion.. its been crazy… but I thank you all for your check ins and whatnot.. they mean so much

I think I am done complaining…sorry if I drove you nuts reading this.. sorry if I left anything out or any body out…

I absolutely have loved the treatment we have gotten here since June, for the most part… But little things really set me off lately.. especially when I see it upset Chris because he is a good patient… he doesn’t say much lately but its not his fault…

I have been very cranky lately and I think this is all hitting me… I feel very alone even though I am not.. but the guy I could usually talk to about everything isn’t really talking (or awake) and it’s the holidays and everyone is busy… and I think although it a happy time of the year, it’s a crappy time to be in the hospital.. and its hard to keep my head up…
It will get better

Goodnight everyone
Xoxox Jenn

New Pics

this is the new toy i bought rex... couldnt get a good pic of him in it...

































me and chris this past weekend

chris eating italian ice with blanket on his head

more funny faces with blanket on head

Tomorrow is the Big Day- Day Zero

I know I have been slacking... no updates in 72 hours... sorry

Monday Dec 8th- I was driving to the hospital in the morning... Called Chris and found out he had thrown up at 6am :( Just once... but they gave him more Ativan...
I went to work.. barely talked to him during the day... No more vomiting though...
They started the immunosuppresents... and they gave him red blood... so he was pretty groggy...
When I got there after work, I asked him if they did the ecco cardiogram... and he was in and out of sleep.. i finally understood him.. they did it in the room...
I stayed there til bedtime but he was sleeping most of the time anyways... Padma was his nurse Monday night... she is a good nurse... I know he is taken care of when she is there

Tuesday morning I went to the hospital... still sleepy... they have him on round-the-clock zofran and compazine... ativan when he needs it... Anne was his nurse.. her last day... she is gonna have her baby in the next few weeks... He slept all day...
When I got there after work, he tried to have some canned pears and his Boost... but didnt eat much else..
I did get him to sit in the recliner... I washed his legs and feet and gave him a pedicure and moisturized him.. his skin has been so dry... peeling on feet... so it was time to pamper him.. now i know how to get him in the recliner... Then he got back into bed... Nina was his night nurse...
I asked Mary Kate after work if he could have Nancy as his nurse (she was coming back after like 6 days off) but because there are so many pregnant nurses, Nancy might be needed for chemo patients (prego nurses cannot do chemo)... But she understood and told me she would do what she could... Chris feels very comfortable with her because she takes very very good care of him.. most of the nurses do.. but she really goes above and beyond.. i know she cares and looks out for things.. she is proactive... My brother also surprised us with a visit for a while..
Chris talked in his sleep a lot again... he was trying to lick something in his dream.. later on he was using his hands in a driving or boxing motion.. i wish i had a video camera.. awwww
Nina was on for the night... all is good
I left late at night and went home...
My dear cat who always greets me and jumps from the bed into my arms tried something new Tuesday night.. he jumped from the floor onto my shoulder ... what a high jumping maniac... i know he loves me and thinks he is a human child of mine.. but he is nuts...
I went to bed

Wednesday morning (today) I saw Chris this morning.. still icky.. but ok.. Melissa was his nurse today... Next best day nurse we coulda gotten today... she is a sweetie.. so we are happy...
After all he has been through, its just so much more comforting to have familiar nurses (not ones who he hasnt had before) when he is going through the transplant and the days following...
I went to work and talked to him briefly...
On my way home i talked to chris and he had thrown up today (2nd time in 3 days)... he threw up some pills... and crackers.. hadnt eatten much..
When i got to the hospital, Nancy (see, she is still involved) yay! tells me that she called pediatrics oncology or something and was told about another anti nausia drug.. they had just given it to him....
It worked a lil so far.. he nibbled on some of his dinner... and seems to be a little better

Tomorrow (Thursday) is the big day... Not sure yet what time the infusion will be (transplant or infusion of stem cells) It depends if they were transported tonight or if its flying in tomorrow...
They will give him the new stem cells and apparently it comes in on ice.. its super fresh.. and we dont know if the donor donated in NY, Cali, Scotland, Montana.. could be anywhere.. so it depends how far it traveled and all that good stuff... but tomorrow is the day
I am gonna work here from the hospital tomorrow..
They will be giving him benadryl, anti rejection, tylennol, etc etc... so he will be sleeping during it i am sure.. but i want to be here for emotional support.. its a big day..
apparently, bone marrow transplant survivors call it there new birthday... so anyways...
I am hoping to see Sharon tomorrow... or soon if not tomorrow
Lew called him.. i think they are talking now...
My mom came with me today after work.. she brought a clean afgan because i want to take Aunt Ro's home to clean (i imagine he should not use it for 5 weeks without washing it once in a while since the room is supposed to be as sterile as possible)
After tomorrow, we wait... over the next few days, we wait to see how things go... and hope he doesnt get too sick... hope that the marrow doesnt reject his body or vice versa...

anyways, Xanex time is coming soon...
more prayers are requested... thanks everyone for all your texts and calls and emails and whatnot... i am still getting back to some of you.. its been very busy.. sorry for the delay
Let me know if you want to visit.. I will be around - company is good.. especially when chris is sleeping a lot...

I have a lot of pictures I will post later... stay tuned

xoxox Jenn

Nausia Begins... Grrr

Chris woke up this morning... called me (I slept home) and told me he was ok but had a fever in the middle of the night... 102 or so
But it broke by 6am or so
He told me he was about to get his last chemo. Jen was getting that ready for him (Anne is prego, so cannot give chemo)
I asked if he wanted me to make homemade food.. he said that sounded good.. so I made a big pot of macaroni and cheese... He said he could go for starbucks hot chocolate so my dad drove me to the hospital and we stopped at Starbucks...
jeanie drove me home last night and I left my car at robert wood..
We went to houlihans last night for my birthday outing.. and we hung out with chris.. and now i was able to go home to sleep without having to drive...
Anyways, my dad dropped me off today around 130pm.. and Chris was having the nausia hit pretty bad,,, he was very sleepy cus the Zofran and Compazine wasnt doing enough so he got Ativan... but no appetite :( so the mac & cheese went in the fridge ... and he took a few sips of hot chocolate. poor chris....
We watched football today and chilled...
We found out they are doing an ecco cardiogram tomorrow (not sure how that is spelled) to check his heart (like an ultrasound of heart) they want to make sure they arent overlooking anything because his heartrate has been a little elevated and when he gets up or moves it goes up a little more
They are also testing a thyroid because apparently there is a hormone that if it is low could make the heartrate high... and that hormone could have been affected by all the chemo and whatnot he has had... so they are just checking everything.. they dont want his heart working any harder than it has to and they want to make sure there is not something wrong that is being overlooked...
Tomorrow, they start immunosupressants (totally spelled that wrong too)
And we are getting closer and closer to transplant...

It is now 830pm... Chris is still unsettled.. They decided today to start him on round the clock zofran and compazine for nausia.. gives him a baseline.. Ativan is on order whenever he has breakthru nausia.. he barely ate his pb&j dinner.. so he just asked for ativan and will attempt to eat some more before bed.. we are going to watch the redskins game for a bit... hoping they lose because Dallas lost :( and can you believe the damn Eagles won?!?!? booo
He told the nurse he would fight the ativan and stay awake but it looks like ativan is winning.. he is sleepy...

Until later...
xoxoxox jenn

Saturday Day " -5" 1 more day of chemo

Well, last night (friday night) Chris spiked a slight fever... 100.4

I think I told you that last night..

But then later on his heartrate was up to 180!! They were concerned... hooked him up to the monitor... and asked if he was anxious or anything...

Doc came in... suggested fever could cause that... and that he might be dehydrated... because they did an EKG also and that looked fine. They want to keep an eye on it.. but after they gave him Tylennol and fluids last night, his heartrate went down to normal...

Nina was his nurse after 11pm... Between her and Carol, they were checking on Chris and then his heart rate went down to normal, although still higher than normal but it was normal for Chris all week...

I slept at the hospital since it was late now and i was tired...
Saturday morning I went home and ran errands with my mom..
Chris and parents went to see Chris... and I got there a little later

Today, Anne was his nurse. She is due in a few weeks and this is her last weekend working
They said that all day his heartrate was good.. between 105 and 125 or so... and his temp is 99... so we are good..
They gave him red blood today
That makes him sleepy

Last night, Asante was his nurse for a few hours before Nina got in.. She saw me today and printed out the list of all the medicines Chris is on... and when he gets them.. she remembered I asked about antibiotics... i thought that was so sweet.. she remembered and went over it with me...
Now I know exactly what times things are due.. although i have to fish through some of the jargon i dont understand... and it also says what he will be getting 30 minutes before transplant (infusion) etc...

TOmorrow is his last day of chemo...
Dr Aisner is on this weekend and saw Chris today... he explained that anything could cause the fever he had.. it could be a pimple and then he gets a fever.. all because his immune system is becomming so suppresed... They are continuing to monitor.. so far all his cultures have come back negative... and they arent sure what was up with the heartrate last night.. but they are watching... and the infectious disease docs are involved for antibiotics monitoring...

Tonight, Jeanie is meeting me here to see Chris and to take me out for my birthday.. I still cannot believe i am 29.. but its about time i go out and celebrate it...

Talk to ya all tomorrow
xoxox Jenn

Thursday Night into Friday

Well, Thursday Night, I went straight to the hospital after work.. Except I made a stop at Pathmark for Chris

Isabel relieves Nancy and shortly afterwards, Will, the CCT, takes his vitals and he is running a fever...

At 8pm, it was 100.6.... By the time I left at midnight, it was 101.6 and then overnight it was 103...

By 5am Friday morning, it broke.. went down to 100... and then by 9am it was 99...

The doc came into check him Thursday night and said they were starting antibiotics...

Friday during the day, Dr Weinstein from Infectious Diseases came by to see Chris... Turns out he is Dr Partridge's father.. We love Dr PArtridge (she did his finger surgery and thigh biopsy)

Dr Weinstein is on board so that Chris gets the most appropriate antibiotics during all of this when he gets fevers or infections...

Its now Friday night and after stopping to get Chris pretzel goldfish (cus thats all he wants) And I cannot control myself in Target so I get other snacks and a toy for Rex... I am at the hospital.. Looks like 3 of the 11 bone marrow rooms are vacant and nurses are unfamiliar :( awww where is Isabel? and Tracey and Tanya? and Jen? so sad....

Anyways, Asante is his nurse.. we meet her.. she is very nice... turns out she is filling in cus Nina will be late and will be his nurse...

Chris eats some goldfish.. I ask for CBCs... We got no CBC printouts all week.. so I asked for a printout and hopefully get one.. I want to see where his counts are...

Will comes in to take a temp... and vitals.. and here we go again.. Chris has 100.4 temp :( they are checking to see if they should do more blood cultures.. and the nurse is checking to see if the ones from yesterday came back yet or not...

They also swabbed his thigh wound last night because its still healing very slowly and was looking a lil wet last night.. but that came back negative today...

They are cleaning it and applying silverdene TWICE a day like originally prescribed.. up until today they have only been doing it once a day...

Chris is rotating all his fun Hawaiian shirts... and some other button downs.. i have to find a fun Christmas button down for Chris...

I bought him a reindeer ornament thing at Target tonight and hung it on the cork board in his room... and i got him a snowman decorated kleenex box to add some christmas cheer to his room...

Anyways, Ava just came in to do Chris's blood cultures...

He is bummed about the temp because they think it might be spiking more later on tonight like it did last night :(

Today was his 4th day of chemo.. which is "Day -6"

Today was his last day of BCNU (carmustine) chemo (which was originally from brain cancer patients) and tomorrow is his last day of fludarabine chemo... And then on Sunday he will have melphalan chemo...

Monday he starts anti rejection drugs... Monday is day -3

Thursday Dec 11th will be bone marrow (stem cell) transplantation or INFUSION

The nurse Asante just stopped in with the CBCs and told us that there are no growths found in the blood cultures that they took yesterday which means so far they are negative...

They are taking more blood now to check again...

His platelets are still ok.. at 173,000

His white blood cells are low... so he will be neutrapenic any day.. they are at 2.2 (they are supposed to be at 4.0 to 10.0 thousand/ul)

RBCs are low.. at 2.72

and thats all I will go on about for now...

I am wondering who is on tomorrow (as far as day shift nurses) and am wondering if I should crash here since its already 945pm... I am supposed to go shopping in the early morning with mom... and i dont want to leave at 2am... just thinking outloud.. anyways...

Oh, so Chris has a neighbor (patient in the next room) who looked really young,.. he would take walks all week in the hallway with a mask on.. holding hands with his girlfriend.. and they always look in the room when they walk by...

turns out he is 20.. has been battling whatever he has.. for 2 years.. and smokes in the bathroom... breaks my heart...

And, there is a criminal on the floor... or so i think.. cus there are officers stationed outside and inside his room at all times... interesting right?

So, when i was home after work today for a bit before i came here... Rex decided to jump on top of my mom's lap while she was writing Christmas cards.. so it made things a lil difficult... but i am attaching a pic

And, on Wednesday, I got a surprise delivery at work from Chris for my birthday.. pretty flowers.. so i am attaching a pic of that too

OK.... talk to you all later

xoxox Jenn

Quick Update

Its Thursday... Chris is doing pretty good so far. Today is Day 3 of chemo. He adds a 2nd chemo today. nancy was his nurse yesterday and today.YAY! And, Isabel was on last night.. Its been a good few days of nurses...
I made him get out of bed yesterday afternoon. i got there after work. Nancy told me he was in bed all day. So, he sat in the recliner from 6pm til 4am...
Physical Therapy is coming today again-- he wants to walk down the hall (with a mask) if he can
His only complaints are tendonitis pain in elbow, knee pain from falling on the weekend, and sternum (chest bone). No idea why his tendonitis is so bad (but the docs are aware)

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