Ok... so I thought we were having a weekend home to relax... but no...
Last night (friday night) Chris wanted to get out of the house... knowing things could be happening fast (with complications and with transplant hopefully) he wants to be out and about when possible...
So, CVS wasnt going to have his oral chemo til after 6pm... so we picked it up, grabbed food at the Sherban Diner and than Starbucks...
Basically since Thursday night, he has the new pain patch to help with pain and lessen need for popping oxycodone... so he's got that going on.... now 24 hours later, we get the chemo pill and he takes the pill at 11:30 with night meds...
during dinner earlier, he was quite sleepy.. possibly overdrugged, still adjusting from patch with the oxy...
well, 3 hours later its 2:30am on Saturday, Chris wakes me feeling weird, trouble walking again, pain... Chris calls Dr Strair at 230am and we are told to go to the ER
My mom comes with us... They hook him up with delaudid and more drugs... they dont see signs of more spine compression ... but they are concerned.. so they admit him and increase the steroids to see if that helps.... just in case there is something going on in spine
Chris is more content with being here.... he knows he has to let them get the pain control figured out and do everything possible to get him in a place where the transplant is not postponed and happens asap
Hopefully the change in steroid doses down then up and then more up along with pain patch just messed him up...
they said steroids can cause the leg weakness he is having.. so we will see
More hospital time :( we were gonna get to the shore this weekend... oh well :(
what else? he was supposed to have a follow up at the doc Monday... was gonna have pre-transplant heart and lung function tests tuesday.. and a bone marrow biopsy wednesday..
i was stressed cus i am trying to be at work as normal as possible until tranplant time.. it gives me added anxiety... so i had rides lined up... dad is taking a vacation day wednesday...
we dont know how long chris will be here.. but they got the heart test done today.. so at least i dont have to stress about transport for monday and tuesday it seems...
Aunt Ro called today.. She is visiting tomorrow all the way from maryland... she talked to Dr Strair on the phone... she understands the clinical side....
Lew is flying up from Florida which i know chris is excited about seeing him.. and Matt will be driving down soon.. it will be good to see family... good for him ;)
Well, on my way back here today (cus i went home to nap and shower from 2:30pm til 7pm), it started pouring, of course... it always does when I have to drive to the hospital...
I stopped at starbucks for us... and I talked to God the entire way here... it helps to get crying out of the way in the car... plus my xanex from the morning was wearing off (nice how i am telling you all about my mental state) I told God somethings again, just to make sure he isnt forgetting...
Christine is here at the hospital keeping us company... they were having a heart to heart when I got here.... So, we are here... hanging...
love you all.. goodnight
Saturday, October 25, 2008
Friday, October 24, 2008
Friday- Weekend is here
Nothing too new to report... we are hanging in there
Today is a better day. Chris is mentally re-grouping and we are on our way out to the pharmacy to pick up the new oral chemo ... we are counting on this stuff to help prepare him for the best transplant possible...
Grabbing a bite... then some R&R that we both really need.. this week wiped us
Just want to thank everyone again, from the bottom of our hearts for all your love, thoughts, prayers, calls, concern... We cannot express our appreciation is words...
Hope everyone has a nice weekend... We arent sure what we are doing this weekend... Chris has some ideas "to get out of the house" but if you are around, reach out...
Love you all.... Jenn & Chris... xoxoxoxox
Today is a better day. Chris is mentally re-grouping and we are on our way out to the pharmacy to pick up the new oral chemo ... we are counting on this stuff to help prepare him for the best transplant possible...
Grabbing a bite... then some R&R that we both really need.. this week wiped us
Just want to thank everyone again, from the bottom of our hearts for all your love, thoughts, prayers, calls, concern... We cannot express our appreciation is words...
Hope everyone has a nice weekend... We arent sure what we are doing this weekend... Chris has some ideas "to get out of the house" but if you are around, reach out...
Love you all.... Jenn & Chris... xoxoxoxox
Thursday, October 23, 2008
Our Appointment Today- A Set Back
Well... we went into today's morning appointment thinking we were getting some treatment info... some dates... etc...
They took 20 viles of blood... and will be doing type matching for the transplant..
When Jackie and Dr Strair talked to us, we heard some things we were not expecting...
There is one new bump since last week. The doctor is concerned about the aggressiveness of the leukemia.... and made it very clear that if Chris were an older guy, transplant might not even be in the discussion right now.. that was hard to hear...
Basically, we knew this was a very serious disease... his version is rare.. so there are much less statistics on this type
Going into transplant with this level of activity back in his body makes it a lot harder to fight...
They are working rigorously on getting a date from the donor..and we are praying he is available ASAP... We found out the donor is male and 23!!! That is good news. the younger the better and same sex is always better as well
Additionally, if this donor isnt ready soon enough, we have 2 other exact matches who have been contacted... they are both male and 30-35 yrs old.. some people cannot even find donors... so we are lucky...
They gave Chris more pain meds today including a patch so that he isnt so uncomfortable over the next couple weeks... he is also starting an oral chemo tomorrow... we want to try to stop or maintain the new leukemia activity now.... so...
Chris will have standard pre-bone marrow heart and lung tests tuesday and a bone marrow biopsy on wednesday...
and as soon as we hear from the donor as far as a date, chris will hopefully be ready to go into transplant... we are now praying we can pause or slow down the growths until transplant.. its crucial for the bone marrow to be able to happen
Its going to be a harder fight.. there will be more leukemia for the new immune system (Donor's immune system) to find and kill...
I am not going to lie... we got very emotional... Chris and I were not prepared to hear the doctor and Jackie talk about how much more serious it is now nor how worried they are either.... I was holding in emotions but Chris broke first... then Jackie cried... she is so awesome... with all the shit going on, having an aggressive awesome team but that is human and has emotions makes it more comfortable... it sucks... now we just wait to see how the chemo oral pills work and how soon they can get him into transplant..
I believe in God more than ever and I know unfair things happen to people often... but I am trusting and hoping that after all the shit we have been through, in life, and especially now, that 3 donors is God's blessing.... and if you are meant to beat cancer, you are going to beat it no matter how bad things are,, A 23 year old's marrow should be pretty damn strong and working!
Anyways, its been a rough day for us... again, if you pray, just pray for Chris... I believe God is listening... Thanks everyone for your emails and comments and everything...
Love ya!
They took 20 viles of blood... and will be doing type matching for the transplant..
When Jackie and Dr Strair talked to us, we heard some things we were not expecting...
There is one new bump since last week. The doctor is concerned about the aggressiveness of the leukemia.... and made it very clear that if Chris were an older guy, transplant might not even be in the discussion right now.. that was hard to hear...
Basically, we knew this was a very serious disease... his version is rare.. so there are much less statistics on this type
Going into transplant with this level of activity back in his body makes it a lot harder to fight...
They are working rigorously on getting a date from the donor..and we are praying he is available ASAP... We found out the donor is male and 23!!! That is good news. the younger the better and same sex is always better as well
Additionally, if this donor isnt ready soon enough, we have 2 other exact matches who have been contacted... they are both male and 30-35 yrs old.. some people cannot even find donors... so we are lucky...
They gave Chris more pain meds today including a patch so that he isnt so uncomfortable over the next couple weeks... he is also starting an oral chemo tomorrow... we want to try to stop or maintain the new leukemia activity now.... so...
Chris will have standard pre-bone marrow heart and lung tests tuesday and a bone marrow biopsy on wednesday...
and as soon as we hear from the donor as far as a date, chris will hopefully be ready to go into transplant... we are now praying we can pause or slow down the growths until transplant.. its crucial for the bone marrow to be able to happen
Its going to be a harder fight.. there will be more leukemia for the new immune system (Donor's immune system) to find and kill...
I am not going to lie... we got very emotional... Chris and I were not prepared to hear the doctor and Jackie talk about how much more serious it is now nor how worried they are either.... I was holding in emotions but Chris broke first... then Jackie cried... she is so awesome... with all the shit going on, having an aggressive awesome team but that is human and has emotions makes it more comfortable... it sucks... now we just wait to see how the chemo oral pills work and how soon they can get him into transplant..
I believe in God more than ever and I know unfair things happen to people often... but I am trusting and hoping that after all the shit we have been through, in life, and especially now, that 3 donors is God's blessing.... and if you are meant to beat cancer, you are going to beat it no matter how bad things are,, A 23 year old's marrow should be pretty damn strong and working!
Anyways, its been a rough day for us... again, if you pray, just pray for Chris... I believe God is listening... Thanks everyone for your emails and comments and everything...
Love ya!
Tuesday, October 21, 2008
October 21st
So, today, I come home from work. Jackie, the super nurse/bone marrow coordinator of Dr Strair's.. she calls and tells Chris that Strair should have preliminaries on the biopsy by end of day.. holy shit...
Well, a few hours later... she calls back
It is leukemia. It has comes back
This is exactly why he needed the bone marrow transplant from Day 1 when they first diagnosed him.... because this leukemia can come back THIS fast... and with a vengence...
So... Dr Strair is ready to move him right into bone marrow transplant.
Jackie is working on scheduling a date. We will see the doc on Thursday for final information...
Its disappointing that the leukemia is back before transplant... but the transplant goal is to get rid of the leukemia... and leading up to transplant, he is getting major strong chemo to get rid of a lot before the new bone marrow gets put in...
The good news, is we are getting ready to take care of this nasty disease... its overwhelming.. we had a very overwhelming summer, a more overwhelming few weeks with the leg issues and lumps, and a very very ridiculously overwhelming day. Today was the reality we were ready for, but you never really are totally ready. Shit.. no one thinks they will get hit with this at 28, out of no where.. I am so proud of Chris... he is so strong.. even though he thinks he isnt sometimes...
We are trying as best we can to mentally prepare for this 4-6 week stay in the hospital for transplant... We arent sure how soon Chris will be admitted. Thursday we will most likely know.. it could be as soon as Friday.. it all depends on how fast the donor can be ready to donate his goods... 10 days before transplant day (Day "0") is when they start the chemo for Chris... 6-8 days of chemo and then 2 days of rest.. and then on DAY ZERO is when they transfuse the new bone marrow into Chris....
Let me tell you, this leukemia coming back so damn fast after 3 rounds of chemo and a clean petscan (or almost clean petscan) in July is a reality check... this is exactly why a transplant is necessary to fix him.. and this is also a time to realize how lucky and blessed we are that in the midst of this terrible disease.. this unfair time in our lives.. how great it is that Jackie and the National Database was able to find a donor.. and so soon...
This, is definitely helping us keep the faith.. faith that God is looking out for Chris and me and all of us.. that He has a plan... and we just pray that he is on our side in all of this...
So... on that note... my blog is officially current.. I really wish I thought of starting this blog back in June.. but nonetheless its caught up, it exists and I will update frequently... I will write more in a couple days when we have more information from Roger (Dr. Strair)
Please keep us in your prayers... and feel free to contact us, comment, email, etc..
love you all, Jenn and Chris
October 13-October 20 - Petscan & Spinal Tap Happen
Ok... So Monday October 13th comes. They schedule Chris to go down to down to petscan and to radiology for the spinal tap.
The reason they do spinal tap down there (when they are not successful at bed-side) is because they can see exactly where they need to poke to get to the spinal fluid. A neuroradiologist does the spinal tap... and then a fellow (From Dr Strair's team) does the push of chemo into the spine.
Well ,listen to this...
Remember the fellow that told us on October 10th that her brain was not efficient? Yea, well she was the one down in radiology who was to push the chemo... She was not there at first... She walks in, and immediately his blood pressure and heart rate went up. When it was time for her to do her part, the neuroradiologist actually tells her to assist him and he takes over. Chris said she looked like a fish out of water.... So spinal is all over... the fellow leaves.. and the neuroradiologist basically agrees with Chris that he has no confidence in her.
Chris is sent back to his room. I come back to the hospital. We spend the night hanging out...
I go to work the next day (Tuesday Oct 14) The team of doctors comes around.. still no petscan results... ugh...
Finally Chris is frustrated waiting for results. they usually rush to get his results
He calls Dr Strair and immediately he is like "why havent the petscans been read yet?"
40 minutes later he calls Chris and tells him there is new activity on the petscan. He tells Chris he can go home and come see him in 2 days...
October 16th, we go see Dr Strair. They tell us about the new activity. Dr Strair needs to find out if these 5 new lumps/growths on Chris's thighs, belly, and elbow are leukemia or not. We have an x-ray after the appointment to make sure that there are no growths on bones that might cause a fracture. And, we have the biopsy of a bump on the right thigh scheduled for Monday the 20th
The 20th comes.. Dr Partridge- who we love- removes the growth... Chris feels good.. they used a local.. so he can go home almost immediately... we go home and await the results... it shouldnt take more than a few days...
The reason they do spinal tap down there (when they are not successful at bed-side) is because they can see exactly where they need to poke to get to the spinal fluid. A neuroradiologist does the spinal tap... and then a fellow (From Dr Strair's team) does the push of chemo into the spine.
Well ,listen to this...
Remember the fellow that told us on October 10th that her brain was not efficient? Yea, well she was the one down in radiology who was to push the chemo... She was not there at first... She walks in, and immediately his blood pressure and heart rate went up. When it was time for her to do her part, the neuroradiologist actually tells her to assist him and he takes over. Chris said she looked like a fish out of water.... So spinal is all over... the fellow leaves.. and the neuroradiologist basically agrees with Chris that he has no confidence in her.
Chris is sent back to his room. I come back to the hospital. We spend the night hanging out...
I go to work the next day (Tuesday Oct 14) The team of doctors comes around.. still no petscan results... ugh...
Finally Chris is frustrated waiting for results. they usually rush to get his results
He calls Dr Strair and immediately he is like "why havent the petscans been read yet?"
40 minutes later he calls Chris and tells him there is new activity on the petscan. He tells Chris he can go home and come see him in 2 days...
October 16th, we go see Dr Strair. They tell us about the new activity. Dr Strair needs to find out if these 5 new lumps/growths on Chris's thighs, belly, and elbow are leukemia or not. We have an x-ray after the appointment to make sure that there are no growths on bones that might cause a fracture. And, we have the biopsy of a bump on the right thigh scheduled for Monday the 20th
The 20th comes.. Dr Partridge- who we love- removes the growth... Chris feels good.. they used a local.. so he can go home almost immediately... we go home and await the results... it shouldnt take more than a few days...
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