People in Our Life... Some Details.. photos

OK... so I posted some new photos on the main page...



I know people in Chris's world dont know people in my world and people in my world dont know people in Chris's world.. and some know both



I posted some pics of people with captions so you can put a name with a face and understand who I am referring to

I know its hard to know who I am talking about when I am throwing out names.. but I am trying my best


My brother Chris, lives at home with me, mom, dad, and Chris

































Jeanie, Christine Rabbath, Christine Rapach- best friends of mine -- like sisters


Jeanie, lives 5 minutes away, married to Brian with 4 yr old Olivia... been attached at the hip since we were 17
Here are more pics of Jeanie with Brian, and of Olivia


















Christine Rabbath, lives 25 minutes away, married to Mike with 8 month old Ben, her family is my family... went to school together kindergarten thru high school



























Christine Rapach, lives 10 minutes away, single... reuninted when we planned high school reunion last year... always there for me

Lauren, my 20 year old cousin... her dad is my godfather.. she is like my lil sister

























My mom, Loretta, works at a child care center

My dad Vito, works for Budweiser in Newark NJ, standing here in Chris's storage unit when it was still empty

He was my saving grace from june til september end when he was on disability and able to drive chris to appointments



































Brother Lew, Air Force , stationed in Florida, has awesome gf Jen





















Brother Matt (2nd oldest Waxmonsky boy... only Peg separates Chris and Matt in age) lives in North Jersey


































Then there is Grandma Peters, Aunt Cathy, Aunt Ro, Grandma Phyllis, Ronnie, Gary, Jimmy, Jeremy, my friends at work Ann, Roxy, Tash, Paula (who brought us special things from Fatima), Gwen, Jess, Amy, Jeremy W, Cass, Lisa, Cousins Bethann, Leeann, Gina, Jaime, Patti, Shannon, Christine, Meredith, Mike R, Carol, Rebecca, Ann Marie, Mrs R, Mrs C, Kristin, Dana, Adriana, Kathy B, Eileen, mom's coworkers, Melinda P, Jen B, Jen L, Michelle, cousin Jen, etc etc who I will write more about... people who continue to offer prayers, suggest help, tell us they offer prayers at their church, etc etc.. more descriptions and lineage and photos to come

We had visitors today--- and more hospital "stuff"

OK... so Chris is getting lots of Delaudid ( major pain meds through IV) and steroids.. they are trying to work out the right doses and see if his pain gets better....
They did a mugascan yesterday which tests his heart to make sure he is good to go through the transplant... Today, they did a catscan of the head to make sure they can do the spinal tap tomorrow... They always want to check the spine because thats where his original leukemia presented itself.. and because the leg pain could always be indication of spinal cord compression

They did not think his strength, symptoms, etc seem to be spinal compression which is I think why they arent rushing to do an MRI.... Also, they did an MRI 2 weeks ago which only showed 1 lil nodule... and no spinal compression.. but it seems if his pain isnt under control in the next day, they will be scheduling an MRI... with anastesia of course
also, as long as catscan from today of his head was ok, they should be doing spinal tomorrow...
pulmonary (lung)test would be tomorrow too.. thats another pre- bone marrow transplant test...

Aunt Ro and Uncle Les came today!! I got to meet them... Love them love them love them
They brought Halloween balloons and scarecrow plant and snacks and magazines... it stinks they are all the way in Maryland... but it was so great to see them... it made chris so happy, i know...
They are not only great family... but they are some of the smartest people i know... and Aunt Ro is in the infectious diseases industry so she has been very helpful with checking into chris's diagnosis and treatments.. its so reassuring and helpful (forgive me Aunt Ro, if I messed up describing what you do)

Lew and Matt will be up this week.. so thats great...
we do not know how long he will be in the hospital this week.. depends on getting his pain under control and what they determine is really causing the pain... the pain in hips and chest (sternum atra) is an indication stuff is going on on his bone marrow)...
Bone marrow biopsy was supposed to be outpatient Wednesday.. if he is still here, they will do it here

Remember the Doc (fellow) who couldnt handle the spinal and told us her brain doesnt work?? yea, well i requested that she does not do the chemo push during the spinal since she makes Chris uncomfortable... the nurse even told the doc in charge.... and when i talked to the doc, he tried to tell me she wouldnt be alone (the neuroradiologist is there) but Chris doesnt want her there.. so i re-iterated the issue... Hopefully my request will have worked and Dr Naylor will do the spinal .... or someone else... just not the doctor we dont feel comfy with

ok... well i am going to sign off of here... have a good week everyone! we will keep you posted again tomorrow

xoxoxox

Update- Back in the Hospital Today

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

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

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!