BIG DAY FRIDAY

Well, I woke up at the hospital today and started working from here... Except then my VPN to get onto work computer remotely would not work .. So I hung out at hospital doing the paperwork stuff I had with me... and waited...

Doctors came to see him as usual... Chris was feeling better...
He was allowed to eat real food today. not liquids... FOOD

His taste buds arent back to normal but he ate...
His sugar was really low this morning (probably cus he hadnt eaten yet and they took him off IV food) so they made him eat candy and drink juice
Then his blood pressure was up which is weird for him...

The priest, Fr Joe came with more scriptures... Sharon, the chaplain came too.... She always makes us feel better

THey gave Chris platelets... and we were still waiting for results

Finally, at 4pm, transport comes to get him to take him for his port to be re-done.. I went down with them and then when they were ready to take him in, I went back up to his room to wait...

Who did I run into on my way to Chris's room? Yes, Dr Strair... My heart sank into my belly...
Was I ready for this alone?
He said he was looking for Chris and that he wasnt there (obviously)
Well... he told me that the preliminary bone marrow results look good...
He said we would have final next week but that the marrow is definitely improved since last time... he said we should be moving into transplant next...
Monday, Jackie will be calling to work out scheduling the donor...
and, he also commented on the growths on Chris's legs being shrunk or gone...
So, he seemed pleased
He will be back to see Chris Monday...
He said Chris should be discharged by the end of the week (so, 5-7 days from now) - we just have to keep up with physical therapy and getting Chris walking on his own.. his legs are still so weak
and I asked him when he would be coming back for transplant.. He said aside from making sure that the donor is available, about 2-3 weeks.. Chris needs to recover a bit at home from last chemo and infection
I thanked him... and walked back to Chris's room.. I was majorly relieved...
What a long 2 days
Now, I had to sit and wait for Chris to come back.... I was freaking out with this good news.. I made Chris's bed and cleaned up and then he came back... he was so relieved also

Then, I took a walk to get myself dinner and he ordered
We ate together.... Chris' taste buds are still weird...

I am going to go home tonight to sleep... and will be back in the morning to see Chris..
IT should be a good weekend

Thanks for all the prayers.. and keep praying... we have one more huge hurdle to get past

until tomorrow,
xoxox Jenn

Big Day... Feeling Better... Biopsy Done...

Well, I woke up at the hospital.. Chris is feeling better...
Tanya said goodbye :( Won't see her til Monday or Tuesday...
Tatiana is on again for the day...

I hang out with Chris in the morning til its time for me to go to work
Dr Hart of Infectious Diseases comes in... examines belly... says he feels much improved down there

I leave for work.... Chris calls me and tells me that Dr Strair came with Dr Harrison today...
They are doing the bone marrow biopsy today. Tomorrow, we should have preliminary results...
Ahhhh stress...
They are feeling confident... Chris is feeling much better... belly hurts less... Physical therapy is happening... fever is gone...

He also tells me that his triple lumen port thingy is leaking.. they are going to have to do a new one....

After work, I ran some errands for Chris... and went home to freshen up...
Meanwhile, my brother came to hang out with Chris around 5 or so... he was here for a few hours while i was still running around..
Oh, side note, my brother somehow ate a peanut accidentally this morning... it was an oat bar, but musta been made on a machine that processes nuts... he called me this morning and WAS going to go to the ER.. he was swollen and icky... but, he decided to go home and take benedryl cus he didnt want to wind up with a $100 co pay from ER visit... ugh i coulda smacked him. luckily he is ok.. but anyways...

So, they started an IV in Chris's hand so that they can still give him fluids... Dr Thomas (3rd year resident) came in and checked out the port. She removed the port so he doesnt get an infection.. he will get the new port tomorrow.. we have Isabel again tonight... Chris is feeling good... he didnt need as much dilaudid today and physical therapy is going well...

Tomorrow, I am working from the hospital because Dr Strair will be coming again and because we will be waiting for the bone marrow biopsy results... ahhhh... We are going to learn a lot tomorrow about next steps... all depends on the results...

So, please keep Chris and everyone around here (doctors, donor, etc...) in your prayers... We need them tonight and tomorrow... Chris is very overewhelmed... I am so anxious...
More to follow tomorrow
xoxox Jenn

Veterens Day & Wednesday.. biopsy coming tomorrow!

Tuesday morning... wake up at the hospital...hang out here with Chris...

The doctors come in and out... Dr Harrison feels Chris is 48 hours from a bed sore and tells him he needs Physical Therapy to come get him moving... and should sit in a chair when he can

Chris woke up with a temp... again.. ugh...

My dad comes to visit for a few hours... and Chris is resting.. think he is sleeping and then he chimes into conversation.. His nurse is Nancy again... turns out her friend is friends with my cousin Laura.. small world

After my dad's visit, i go home with him... do my thing at home and then shower... dad brings me back here...

The opium is working... I come back to hospital to see Chris in a recliner... physical therapy had come.. got him moving.. and into recliner.. it wiped him out but he was happy to be out of bed and in chair .. comfy.. and in a hawaiian shirt... getting red blood... he had gotten platelets earlier
Check out pic from today

Nancy leaves... and we have a floater nurse.. chris doesnt know her...
My brother came to visit... so did Christine Rapach...
Chris thought he could just take oxy for the pain.. but when he needs dilaudid, he gets very upset that he isnt interactive for company... We tell Chris its okay... We dont want him to sit there in pain....
We hang out for a while after they left...
I moved chris over to the other side of the bed, closer to the tv before i left.. i was here til 11:30pm or so... he wanted to sleep in the recliner... he had pillows all over...
I talked to Chris when I got home... and then I fell asleep
I missed his text shortly after.. and he called me at 415am... the power surged at the hospital and he wanted to know if we lost power.. i didnt hear my phone ring.. called him back at 445am...
we went back to sleep...

I got to the hospital Wednesday morning to see Chris before work... he was very emotional :( he didnt want me to go to work... well, he wanted me to work from the hospital... It broke my heart... He is getting to that point, just not wanting to be here... he misses bed at home.. misses home... getting frustrated
I am reassured when his nurse Tatiana seems very compassionate when she came in...
I reassured Chris to call me whenever and that i would be coming after work and sleeping here

While I am at work, Chris was told by Dr Harrison that he would not be the doctor for the next week.. Chris is upset
I talked to Chris around noon and he was sleepy..
After work i found out that Chris had freaked out... they came in to do bone marrow biopsy and no one ever told him it would be happening.. he wasnt emotionally ready for this... no one told him... so i guess he freaked, told them he needed to speak with his doctor (Strair) and between that and the physical therapy, he needed meds...
My brother came and helped Chris shave..
Then I got here and was ready to watch the country music awards with chris... but he slept...
Something about his combo of drugs made him really messed up...
He was super disoriented whenever he woke.. but he kept falling back asleep
His night nurse is Tanya.. woohoo... she notices chris is saying weird things in his state and looks lost and/or scared... apparently he got morphine in the afternoon.. for pain when he was in between drugs.. she checks with pharmacy... they feel that
POSSIBLY, the opium is making the effects of his other drugs worse....
eventually he wakes and is back to normal...
His temp is down to 98.6.. his white blood cells are going up (.5)
He says his bowels feel better

Dr Strair had come to see him at the end of the day.. he said he will be back tomorrow to talk to him
I am sleeping here...
It seems he will have the bone marrow biopsy Thursday (tomorrow) ahhhhh
This will tell us if the chemo worked or not... if it reduced the leukemia in his bone marrow.. remember, that was the goal of the chemo so we can go to transplant....

So, please pray... Chris needs some strength to get through these trying times... and pray for good biopsy results

good night Jenn

Monday- back to work

I woke up this morning and stopped at the hospital to see Chris on my way to work

Nancy is his nurse today-- we love Nancy

I am told he spiked a fever... ugh
They do more cultures
Chris is emotional and scared.. he hates dealing with these ups and downs... cant blame him.. its gotta suck

I go to work and then after work I go back to hang out with him.. I am off tomorrow (Tuesday - its Veterens Day)
There is a bacteria they found in his line... Its common from what i am told.. so they added another antibiotic... He is in better spirits...
They also added another anti-diareaha medicine to his meds... His night nurse is Tanya again :)
She gave him his anti-diareaha cocktail.. its opium... go figure... it smells like licorice... but chris says it tastes nasty

I am sleeping here tonight... off tomorrow ;) goodnight

Sunday- Day of Rest.. and football

Photo on the left of Chris and the lemur.

Not too much to report today...

I spoke with Chris in the morning when I woke up.. He was just resting...

Fever from last night hung around a bit around 100- 100.5 but he was doing better

I came to see him late morning with my mom...

He said the doctors were happy with his bloodwork... I guess whatever they see is telling them that the antibiotics are working... all the doctors were here before i got here... I can never figure them out... when I slept here sometimes they didnt get here til noon.. when I sleep home, they come at 7am ... oh well...

Me and mom hang out with him for a few hours.. he is sleeping on and off.. but he needs it... he has to rest... and he had a long weekend with all his family... time to recover ;)

Lew is en route to Floriday already...

He got vitamin K today as well as platelets and some albuim (totally spelling it wrong) it was to help his swelling go down... i think he retained a lot of water... I think he got some potassium too.. and magnesium...

I think the vitamin K was to help prevent bleeding cus his platelets are low...

I might have some of this mixed up.. I got my items correct, i just might have the drugs mixed up with the reasons...

Platelets make him sleepy too...

Chris is getting a little overwhelmed with his frequent need to go to the bathroom especially since it involves a bedpan and calling a nurse or tech...

PT (physical therapy) is coming tomorrow... they are gonna help him get moving

The white blood cell count was .1 yesterday.. and today they are up to .2 Sounds like not much, but in the world of chemo recovery, that is great.. he is on his way up...

Once the White blood count gets higher, along with the antibiotics, he should get rid of this infection and have more energy

The infection, chemo, and diareaha, and meds and whatnot have made the fatigue so bad

Once the bowels get better (he is still getting food through IV, and eating ice chips) he can start eating and that will also make him stronger

I examined his legs myself today and those bumps he had are sooo much smaller.. that is good news... they were leukemic, so the chemo seems to be shrinking those too...

Chris was upset about how sick he got from the chemo saying "oh yea, you are gonna get a lil sick from the chemo.. some diareaha, some nausia... blah blah blah... but this is ridiculous" and all i could do was remind him that its helping him in the long run... and to hang in there.. after a brief bit of frustration/emotions, chris is back in the game.. he is hanging better than most...

We watched the Jets game... Favre is really doing well... 40-0 at halftime...

My dad brought me lunch and picked up my mom ...

We both napped a bit here... and now we have the night game (Giants) on... His night nurse is Tanya again... she is from Connecticut and went to Georgetown... we like her

Chris is loving his lemur (lemar? lemure?) no idea how its spelled...

and he still is thinking of a name...

Aunt Cathy mailed him a hawaiian shirt yesterday so i brought it to him today... he is excited

I am going to go home eventually just not sure if its during the game or after it ends.. and i will stop and see him in the morning before i go to work...

Nick, the CCT was helping out on this side of the floor tonight...

He lovesss Nick... he bonded with him when he crashed in June and came to this floor then...

Unfortunately, when he saw Nick tonight, i was giving chris a hand with the bedpan when he walked in.. but i know Chris feels comfortable around him...

Well, thats about all for now...

love jenn