Transplant Scheduled- & Thanksgiving WIshes

Ok, so yesterday, Chris got a call from Jackie... The donor called back. They scheduled. And Chris is being admitted on Monday Dec 1st, pending Friday and Saturday scans...

This is good news, and overwhelming all at the same time...
It is an emotional, wonderful, scary time for Chris and for me, and for everyone around us

So, last night, we took a ride,,, got out of the house... Chris has been slowly walking up and down the stairs (with help) better and better... but after having his legs in a car for a few hours, he was beat last night...

Today, we will have a nice Thanksgiving... good cooking.. quiet day... maybe watch a classic Christmas movie.. and spend time together...
Tomorrow late morning and early afternoon will be taken up by spinal tap and MRI with anastesia... and then we rest... see how he feels
Saturday morning we have the petscan bright and early... and then we go home...
Chris' dad and brothers are probably coming at some point Saturday.. and maybe some others...
So, Sunday night, we will get a call from admitting about what time to arrive on Monday...
And, on Monday morning, Jackie and Dr Strair will be scrambling to find petscan results...
I am not sure exactly what they are looking for...
I know they want to make sure there is nothing like a fungus in his spinal fluid.. and check his spine and brain one last time... and petscan will show what current activity looks like compared to the activity (new leukemia activity) from pre-chemo 6-7 weeks ago

I suppose we will sorta celebrate my birthday on Sunday, but my best birthday present is having Chris's transplant scheduled this soon... Thats all I want -- Chris to get through all of this... best present I could ask for...

So, its Thanksgiving... and its time to be thankful.. and I am sooo thankful that I have Chris in my life... and I am thankful for God's blessings thus far... mostly the finding of exact match donors for Chris... and thankful his 23-yr old male donor has obviously been very quick to schedule and respond... We both thank all of you for your concern, thoughts, prayers, cards, help, gifts, gestures, etc... Friendship and family are so important... and we have very special friends and family... and at this time of our lives, we see how lucky and blessed we are... We have seen amazing gestures and kindness... and I want you all to know that we see it and appreciate it...
Thanks everyone. I pray that God is as close as possible to us at this time and the upcoming month. We need strength to get thru this last big hurdle... Bring on the new immune system, the new bone marrow, and "work" please ;)
HAPPY THANKSGIVING EVERYONE!!!! See some of you soon! xoxoxo Jenn

Quick Update

This morning, Chris' quick 8am appointment turned into a 2.5 hour event... first we got a lil delayed in new brunswick traffic.. but that just made us 5-6 minutes late... But Chris started walking with walker to the building, then down hall a bit and was so fatigued from the walk... He hasnt walked much since his discharge from hospital (not to mention barely walking in the hospital because of infection and weakness) Anyways... I got him a wheelchair and we got to the suite.. 10 minutes later they tell us Dr Strair is upstairs... Sooo we go upstairs... we see Jackie and then Strair and Jackie.... His bumps are all gone or shrunk to very small size... Jackie noticed a bump on his lower back, but Jackie and Strair wonder if its a biopsy or spinal tap site... They asked about his leg weakness... and we straightened out his insulin... The doner is still not scheduled... I guess they are working on getting him cleared by his doctors also (otherwise it should be a phone call for a date) Jackie said coordinator said they might not have more info til monday or tuesday cus of the holiday.............................. So.... that was pretty much it.. but they asked us to stop at the front desk to get 4 appointments scheduled... so i thought we were out of there and then guess how long it takes to get 3 tests and an appointment with Strair scheduled.??? a long time.................. Sooo... here is what our schedule looks like..... Friday we go to robert wood univ. hospital for 11:00 for a spinal tap and then he will lay flat for an hour and then get anastesia and have MRI of entire spine and brain (he just had MRI of brain on Friday)... then saturday morning we go to JFK and have petscan of body... he has to fast and drink barium in the morning... Then Tuesday we have a follow up with Strair at 830am and then off to JFK for mugascan (heart test) and pulmonary (lung function test)... the mugascan and pulmonary are required for pre-transplant to make sure heart and lung are at ok function... Strair wants to see spinal fluid to make sure there is no fungus or anything before transplant... anyways... i dropped chris off.. got him settled and went to work... visiting nurse came in the afternoon... turns out to be someone i know... her family went to saint helenas.. and her brother is jeanie's husband brian's best friend... small small world... anyways... we are off for a few days.. enjoy thanksgiving and then tests friday... saturday we might have some visitors... and possibly chris's dad and brother.. maybe christine and mike and ben.. maybe jeanie and mer this week... we will see.. nothing confirmed.. but anyways.. oh we put up the new christmas tree tonight... so pretty!!! gonna watch dancing with the stars final in a bit... keep praying.. thanks everyone
xoxox jenn

Update on the Seizure Activity- & Chris Back Home

Saturday continued to be a pretty normal day... other than chris wesiting a weird thing on his head... My parents came by to visit... Chris's roommate in 7Tower is pretty coool... 62 yr old man who like like he is 50-- had a stroke in his optic nerve...

Dr Harrison and the team came by and said that if the anti-seizure med is working, he can go home Sunday... We saw Dr Naylor again.. love him
They have him on Topomax... no episodes seen yet.. they did detect seizure activity on the recording.. but want to video him and monitor until Sunday morning

Dr Harrison says Chris can go home Sunday as long as there are no more episodes
I go home Saturday night.. I had been there since 430pm Friday.. more than 24 hours

Sunday morning, Chris calls me and tells me they will be disconnected his head and discharging him... I go pick him up after lunch time and they prescribed him the topomax and gave him dilaudid for home... to ween him off the patch..
Remember, Chris took the fentinol patch off cold turkey and after a month of patch, thats not good.. they felt he was going thru withdrawals from it, so they are having him wind down...

We went home... I had some issues with the CVS folks, but thats my own lil frustration with the guy who didnt call me when he didnt have the right dose of his meds.. so i had to spend extra time there when i went back to get some answers and things straightened out

Its now Monday evening... Chris is home resting.. feeling better... and we will watch dancing with the stars tonight ;) yay!

We have an appointment tomorrow morning (Tues 8am) with Dr Strair.... follow up appointment.. not sure if we will find out about donor or transplant schedule.. but if we do, i will post ASAP tomorrow
Feel free to call or text me tomorrow after 10am to get info
Friday mid-day Chris has a spinal tap (one last one before transplant just to make sure there is no fungus or anything) and he has an MRI with anastesia after that on Friday to check the rest of the spine ...
Tomorrow, we will get more info on petscan and whether we need mugascan and or pulmonary tests again

Until tomorrow... Goodnight!!
xoxox Jenn & Chris

Photos of Chris on the Neuroscience Floor- Brief Update

Not too much new to report

Pics for you guys... info below.. one pic is Chris late last night while they were attaching wires to head... other pic is Chris today sitting in chair.. they are videoing him 24/7... He is feeling good.. we are watching football

Chris has been hooked up to lots of electrodes and head is wrapped (so they dont come off) and has wires in a sock like thing...

They gave him a button to push if he has an episode (so they know to pay attention to that part of the recording..) Well, all night, he had no episodes...

only episode was that at 3am or so i was awakened by a very loud noice... a helicopter was landing on the roof about 50-75 feet outside the window... i watched it land..i closed my eyes again... great view of the landing pad area.. lol

Chris heard it too and we both went back to sleep

This morning, the neurologist Konstantin Balashov came in and said they were putting him on anti-seizure meds ... they said he didnt sleep much during the night but they saw some sort of seizure like activity.... the original EEG from earlier yesterday saw stuff but they didnt see the beginning of his episode... Preliminary of the MRI looks fine... no leisions... they will probably re-MRI the head in a few weeks

So far today, Chris has had no episodes...

We will be here in 7 Tower all day so they can continue recording him.. ugh

I am posting pics of him... thanks everyone for the prayers and thoughts...

Back in the Hospital - Ugh

Well... late Wednesday night after hanging out, having good conversation... Chris, my brother, and I.... all of a sudden, Chris sorta spaced out... I asked him if he was gonna eat his jello and he sorta looked at me like he didnt know what i was talking about...
He snapped out of it pretty quickly... and I asked if he was ok... took his sugar, blood pressure, and temp... all was good... we decided he was probably tired...
He also took his fentinol (pain) patch off earlier in the day (he saw a commercial about its side effects) and wasnt having pain anyways...
So, we went to bed.. I talked to him,,, he was a lil weird at first with some odd focus on the tv.. but then just talked to me til he fell asleep...
I watched him for a couple hours... he was ok, except waking up with some gas discomfort (sorry, too much information )
Anyways, Thursday morning, he seemed fine. I went to work. He text me a bit... and then he fell when trying to get up to use the bathroom
My mom left work (thank goodness) to go help him up. She called me after 3 to tell me he was acting disoriented...
I called Dr Strair... I explained his moments of disorientation... Dr Strair said if he snaps out of it within a few seconds it is ok, otherwise go to the emergency room
I got home from work.. Chris was ok.. we had dinner.. started watching tv.. and then out of nowhere, he spaced out... He looked at me with a blank stare and did not respond to me asking his name or anything... so in a panic, i screamed for my parents.. Mom called 911 and I called Strair.. while these phone calls were going on, my dad told us Chris snapped out of it...
He is aware of the fact that he is disoriented.. says his brain feels disconnected...
EMS comes.. Edison Twp and a cop... they talk to him.. vitals are ok..
I grab his cell, charger, my purse and shoes and a drink.. and my mom met me at the hospital (she drove my car there for me) and my dad would pick her up
Chris wasnt able to say much in the ambulance ride... but once we got to the ER, he was whispering to me.. He was aware the entire time of what I was saying.. he would smile, squeeze my hand, sometimes talk, etc.. he was happy to see my mom too..
They only allow one person per bedside so mom couldnt stay too long... It was soooo scary watching Chris like this... Chris snapped out of it 30 minutes after we got there... and was talking to me for the rest of the night ... he told me that he saw me looking at me but couldnt reply... he remembers most of the night...
There was one other episode in the ER while we were waiting for him to go to catscan.. it was brief.. he felt it coming on... he said he was fixated on the tv and couldnt turn head towards me
He didnt blank out this time.. just a lil weird... it was brief.
They took him to catscan and took xray and he was ok.. we moved up to the 5th floor and he was admitted
He seemed better and we went to bed (after 3am)
Friday morning, we saw all sorts of doctors.. I didnt physically go into work.. i went home to change and shower and get my laptop and I worked from home for a bit and from hospital for a bit... i will catch up on the rest over the weekend
Friday (today) while i was still home, they did the MRI of his head and when I came back they did the EEG (record brain waves)... He was pretty ok during the day... but when she came to do EEG, he had an episode where he knew it was coming on... he couldnt turn his head on his own nor could be move limbs... the neurologists came in to see this, but couldnt check him out during the EEG
Of course, once EEG was over, they came to see him and he was able to move

The neurologists and oncologists seem to think these are all symptoms of seizure.. but not the kind where you shake and whatnot.. they are called absence or petit seizures.. common more in kids... now they have to figure out why...
MRI should be read by the morning... its 930pm.. 6 hours since MRI and we havent heard anything... so we will see... they have to read the EEG too
Doctors have suggested that the reasons for the seizures could be: all the stress his body has been through since june... manefestation from when Chris got hit by a car when he was 10... leukemia (in the brain, i guess.. maybe tumor)... possibly combo of medicines or chemo... a bunch of good reasons.. but once they see MRI and EEG.. they should be able to figure out what medication to use...

I came back from my stop at home (when his MRI was over) and I ran into Dr Harrison in the hall.. I called his name and he turned around and said "I am not Dr Harrison.. I am Mammal something or other...." i was dying.. he makes me so much more relaxed.. except he continued to say "thats the brain transplant surgeon in there with Chris now..." I freaked and before i could really think about what serious something they may have discovered, he told me "they dont do brain transplants.. just kidding" i am obviously not thinking but now i get it
haha... anyways, Neurologist is talking to chris and checkin him out... Harrison is happy to see how nicely he has recovered from the infection and all.. said his counts look great and nutrition is great.. he told me to keep feeding him whatever he has been eating :) Harrison comments on just getting this resolved so we can move to transplant
Earlier in the morning, Strair had come by

ok... so while i was typing this blog entry, the EEG lady came back... they want to video monitor him for 24 hours... everything he does and everythng we say will be recorded... wonderful... but when he feels an episode happening he can push a button and either of us can talk.. so they will listen to what is being said around the time of the button being pushed... sooo depending on what happens, i might need to jump up and push the button... and as i type more i am hearing that they might have to move him to the 7th floor.. the neuroscience floor for this 24 hour period..
could this get any more complicated? this tech cannot tell me what they may or may not have seen in the EEG...
Here we go again... Just as I get settled in after an unsettling 24 hours, I have to gather our crap that i just lugged here for him (his clothes and stuff)and my laptop and work so i can function here)... do i sound cranky? sorry...
Chris was so excited.. his dad called a day or so ago and wanted to come see him this weekend (at home) and now here we are...
sooo yea... thats that.. now we wait. not sure how soon we will have to move... or when i will get to bed.. or if chris will have another episode
they started giving him ativan a couple hours ago and he seems to be fine... so this should be interesting
I got Chris food from Paulie's tonight..well for both of us... so he ate good...
The 7 Tower rooms are doubles... so i would get a recliner.. they sorta hinted that i should stay with him so i can help push the button and talk... this is weird...
They say they cannot monitor him here cus its neuro equipment and whatever
They are attaching stuff to his head as we speak... the glue smells....
Ok... well i will write more once i have more info... results of the MRI and EEG and all that good stuff
xoxox Jenn