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