Heading to Boston Again.

Well we are officially about to back to Boston to have a tumor removed from Jenn's arm but they also moved the 3 week check up to this week so we wont have to come back 2 weeks in a row. Otherwise things at home have gotten a lot better. Jenn is becoming more of herself again with pulling arts & crafts out of no where as 3 days we even had her out and about outside to enjoy the weather. Unfortunately she did get sun burnt one day which has been an issue at the moment but it is finally starting to tone down a bit. She is starting to walk on her own again and is doing a great job but is having a problem with pain. She claims she just has to get used to it again so that processes is going a bit slower than hoped for but what can we expect after everything she has recently gone through.
Well I better get the car loaded. I will try and keep everyone updated, as I will have the laptop with us but I cant promise anything. We are normally pretty busy while we are here.

Its Good To Be Home.

I am sorry that it has taken me awhile to update since being home but we were released and made the long journey home last Thursday. It was a little rocky at first being home but finally Jenn has settled back into her "colorful" life and we are getting through our days a little easier. We are trying to keep everything as stress free as possible but things get kind of crazy between nurses coming in and physical therapist coming in too.
We had an unexpected visit from Rob on Saturday and it was great because He was able to bring Jenn in to see Kate in her Musical Grease. Kate was so excited when she saw them there that she hardly came to visit us. (Our family had reserved seats because we bought our tickets prior.) Other than the play Jenn has been spending a lot of time with Ashley and the kids again or else helping me sew the costumes that I needed to get done for June and July. I am a little behind after breaking my arm but working with Jenn is definitely helping.
Health wise. Things are going ok. Nikki has been in daily to help work with her legs and mobility in general, not that she is letting a broken femur or collar bone stop her from anything. lol. Also She will wind done on the Vincristine this week and then Monday they are going to be starting with the Cyclophoshamide. So far she hasn't really been do bad starting things up again. She is a little tired today from it but otherwise so far so good. We are going to make a menu today of food that we are wanting to eat and she is also going to start teaching me how to cook. Everyone might want to pray for that since I did blow up the microwave earlier this year while she was away. I apparently have a LONG way to go.
Well I better get off here, I need to go get the laundry so Jenn and I can get our clothes folded and organized again. Again let me stress how Epically amazing it is to be home.

I really Hate the Serious Talks

Well I am happy to report that our move home date was moved again to Tomorrow? At first it was Tuesday and then Friday but due to some scheduling issues it has been moved us to tomorrow. I know that everyone tonight is nervous about the transfer home but I think we were all more nervous when the Med Team came in to give the complete run down of what will be happening. We are hoping to be discharged by 2 pm at the latest tomorrow and that way we can make our 11 hour journey back home. Once we are back into town we are suppose to call and check in with the hospice/home care people so they know to be there in the morning for sure. (Our home days get screwed a lot lately.) Friday we have to check in with the Cancer Center and Doctors in Erie and then we can pretty much just sit back and relax. I am a little nervous about being back in the house with just us again but my sister seems to have faith in me and that is where she wants to be so that is where I will keep her. It hurt a little when Dr. H. made is clear again that things will be winding down and Jenn knows this, as we are pretty sure that it is going to be a rough haul to the end but my sister is determined to go fighting so we are going to help her fight until she can no longer do so. I have been in a lot of meetings myself about what to look for and when I should notify people, but really this is all a really new/scary experience for me and I must admit, one that I hope no one else ever has to go through.
So far she really hasnt had to many side effects to the Vincristine other than mild nausea and then she normally gets sick once or twice and then is fine. Today she was a little weaker and tonight she is more tired but that is expected so we really arent to worried about it. We are actually hoping she will sleep through most of the trip home. Tonight Jenn was kind of bummed and i think that she is missing her real mom right now but she doesnt say much about it. My mom is here with us and we are all trying our best to stay in high spirits.
I think that is really all that I have to update for tonight. I probably wont get to update tomorrow since it will be our epic travel day but I will be sure to update Friday. I also get my cast off my arm friday so there will be a lot of excitement.

Can we get a "WHOWHA"?

Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."
– Virginia Satir

The past few days have been pretty hard core here. We went through a few rough patches but again my sister has pulled through with an even brighter smile than before. We almost last here late last week but for the 7th time having what they consider a "fatal heart attack" and being about to pronounce her, her crazy rhthym started back up again. After getting her back up to spead with the world again a group of doctors were in talking to her and did indeed decide to sign her papers for a new heart. The papers arent really in terms of Jenn Getting a new heart as they are more a last wish type thing. They asked what it was that kept bringing her back and she said mearly that she wouldnt leave until they signed her papers and that she was simply just born to prove them all wrong. It was pretty entertaining to us because maybe deep in my heart, I know that she did just prove them wrong in so many ways. 6 heart attacks ago we were told she wouldnt survive another one and we have said our "final goodbyes" 4 times now just to turn around and have her singing and dancing in her bed with us a few weeks later.
This time we are finally hopefully that even if this isnt the end of her hard struggles, then she will at least finally get to continue EVERYTHING at home. We are looking at being released the 21st where nurses will pickup Jenn's care at home the 22nd. I can say that Jenn has NOT given up the fight but does realize her current condition and odds and would rather it be this way. She has again started her on Vincristine today with Cyclophoshamide and Actinomycin D to follow. I am not sure that I spelled those right but I am trying. She will also have radiation between each cycle until either she completes 3 cycles or the worst happens. Either way she is determind to fight and be home again.
Please keep her and all of us in your prayers and we help her get through everything she feels she needs.

With a Sad Heart, We Say Goodbye to a Princess.

Many families are joined together every day but the many awful forms of cancer. One by one many of us face our own battles or share the battles of a loved one and tonight we lost one of our very own Princesses to an awful disease that takes no warning or care about whether or not the person deserves it. Today around 3pm, Princess Griselda lost her battle and joined the Princesses in Heaven. Our Team will continue to pray for this family and help in any way that we can but we are asking for others help as well. Below is a message written by the family of Griselda who really need your prayers and support right now.

Our Princess Griselda, gained her angel wings at 3.00pm today..

Griselda; baby girl, you have since day one stolen my heart.. You have a place in my heart that no one could ever come close to filling.. You are my hero, and I love you so much more than you ever knew.. May you always feel my love with you, until we meet again at the gates of Heaven some day.. I love you and will never forget you beautiful baby..

Our princess is now pain free at peace in Heaven with many other beautiful angels; Boey, Kayla & Mila to name but a few..

Griselda's family are overwhelmed at this moment in time not only with loosing their precious daughter but faced with the fact they don't have any money to bury not celebrate the life of their beautiful angel..

I reach out to you all at this time of need, and beg you to donate what you can.. I understand and know very well money is extremely tight at the moment, but we are all pitching in to give the princess the send off she deserves..

No parent should be faced with the fear that they may not be able to give their child a funeral nor a headstone..

I ask if you can donate even $10, it is all going to make a difference to this family, who need help so much right now..

Donations can be made out to CHRISTINA ACOSTA, and mailed to Griselda's Po Box; TEAM GRISELDA, PO BOX 261, GILBERT, AZ 85299

I hate to ask, but we really have no alternative at this time, and know none of you out there would like to see our baby girl go without a send off..

I will try to blog when I am able to cope somewhat better with this devastating news, but for now wanted to thank some special ladies who have loved Griselda endlessly and have been there to support us all, especially myself in this time; Rachel Shay, Cindy Christianson & Dana Rice.. You are all amazing ladies, and I know that Griselda loves each and everyone of you.. You are her earth angels, and she will forever watch over you.. May you never doubt her love for you..

Thank you to every single one of you for your words of support, and condolences, they are more than appreciated..

With a heavy heart,

Sammy..

If you can help, then that's great; if not any and all prayers are still appreciated for this family in a time of great need.

Surgery and Radiation

In a short update, yesterday was a pretty epic day here. Jenni was moving her toes and was able to keep some Jello down and we shared a day full of smiles and chatting between visiting hours, tests, and naps. We were able to get her talking to a few missed friends and family and other than the epic amount of pain, she has a good day she says. We got a few more puppet shows that are on the top of Jenn's favorite list but I will have to upload them later when I have a bit more time. I would like to thank the Puppet man for making her smile so much though. I will admit that I was a little jealous that everyone talked to her and wore her out but apparently I found out that my paper I was having her edit may just have been that boring and put her to sleep instead.
Earlier this morning, Jenn underwent another surgery to place some screws into the bone in her leg to help prevent the femur from breaking more. These will be closely monitored and eventually removed when her bones can handle the pressure themselves. Everything went pretty smoothly but it wasn't until after the surgery when I was told that Jenn has opted to stay the extra week and continue back up with radiation. Apparently her Jack knew as well as Sue, my sister's nurse and friend here, but it still came to a shock to me. I guess It just amazes me that even though she knows the odds, she still wants to fight. I am not sure I myself could ever be that brave or put up with this much pain. I haven't said much about it to Jenn today because she has been pretty groggy and in a great deal of pain but I do plan on bringing it up when she starts feeling better. I think I at least deserve to know what it is she wants so I can figure out how to make it as bearable as possible.
For those who wanted to leave Jenn a message, you may do so here or in our email and we can read them the best we can but I would like to Let Jen F. know that we are able to sneak a few voice mails in here and there so if you would like to, that is your go ahead. Please don't spam the phones though. ;)
I am going to get off here though because I need sleep and to head back over to the hospital bright and early. I finally broke down and started staying with Sue. I will be staying here the next few weeks until we bring Jenn home, hopefully May 8th. Cant Wait!

Reflections and Entertaining update

Well I see that we have many new people coming to check out our site which really doesn’t surprise me anymore considering the amount of lives my sister has touched. I do think that before I start into the evening report, (it is going to be a very good and entertaining one), that I should give a small reflection on my sister so that some of the new readers have an idea of who my sister is and just how much she means to so many of us.
For those of you who may not have met my sister in person, I would like to start out by telling you that she is an inspiration to many. Her entire life has pretty much been devoted to three things; faith, family (this includes her friends), and art. At least that is the way I view it. Everything she has touched or done has in some way lead to art or been finished in a unique artistic “Jenni” kind of way. She has always been devoted in everything that she has ever done and has always viewed life as a lesson to be learned or some great adventure where beauty can be discovered. The amazing part to us, is that life has been handing her a pretty crappy hand of cards her entire life and it never really stopped her. She was adopted into the family, was moved from school to school with the rest of us, has lost a great deal of family and friends in death, has lived to work through 3 major national disasters, completely 4 forms of training/college/diploma courses that I know of, served in the navy, was a Nanny and for the last 2 ½ has battled with cancer while taking on the battles in our family as well. She continued to dance (ballet), and take care of the Navy kids, and teach until recently when it was only not possible to do so because she was merely in and out of consciousness, but you better believe that she still communicates with all the above people.
There are so many things that I haven’t even listed that many people have been touched by, but those just the basics. The technical side of the story is that my sister was raised in northern PA with a rather large family and according to her, never really fit in. She was more like and still is the middle ground for 4 different families that unite in the middle. She is our mediator, photographer and most importantly the one we go to when we need someone to listen to us and help us fix our problems. She has a college degree in Biology with a minor in Mortuary but instead of furthering her education after that, she joined the Navy, (to help pay for her Master Degree which is still in the works), where she was severely injured and later diagnosed with a rare form of sarcoma called Mesenchymal Chondrosarcoma in October of 2006. This is a cancer which affects the bones and cartilage. Jenn has undergone everything from radiations to bone marrow transplants(2), where although her odds of survival are still only 2%, she continues to prove to the world that her smile is not ready to fade. Her cancer has since began to invade her internal organs and in the last 6 months we have been mostly hospital bound with little precious time left but we have continued to learn a great deal about the woman Jenn has become and continues to become in each passing struggle.

*Special Note for those who are knew- As you follow this blog you will often hear my sister referred to as Snowflake or JenniBean which are nick names that have been acquired throughout her life because of her love for both Snow and Jellybeans.

Finally the update.

Many of you remember how this long 7-8 months started. In June Jenn broke her hip by falling and with much work and determination on both our parts, struggled but successfully managed to participate in her best friends' wedding in September. We never really thought that those might be some of the last exciting days we would share with my sister outside of the hospital setting but never the less they it was a great accomplishment for my sister. For those that were around at the time of the wedding they will remember that due to some turn of events my sister ended up dancing with what we now call the "puppet man". It was actually the groomsman she walked with and the grooms uncle. Because the Puppet man was needed to save the day, the puppet formally known as Eli was added to the group and since then has been a great form of happiness for my sister and in the last 7 months a great form of relief for my family as well. We are not only constantly getting text messages from the best friends that got married but Rick's uncle and the puppets as well.
Last night My sister was able to not only talk to Rick and Erin but was able to enjoy a few puppet videos in the comfort of her hospital room and so we decided that we would share some of them with all of you so that you might enjoy them too. The first is of Eli because that is Jenn's favorite puppet and all time dance partner.


the next is just an extra video that Jimmy or Puppet Man sent us last night. This is Jenn's favorite of the night.


For anyone that knows my sister, that video makes sense with the roses of hope. There were a few more but we will have to share them tomorrow because it is time for us to hunt down dinner and get some sleep.
Thank you all for your prayers and please continue to pray for my sister.

Weekend of Updates

I am sorry that it has been a few days since my last update. This weekend has been somewhat busy. Jenn's boyfriend and my brother drove up from PA and my cousin and Jenn's friend have been here since Thursday/Fridayish as well.
Jenn has been conscious and alert since Saturday but has still been very sick. The staph infection that she picked up in Pittsburgh was in her blood and effecting her heart. She has also spent almost 48 hours vomiting non stop because her body is trying to adjust from all the changes in medicine and her body is still trying to work some built up fluid out. They are still pushing antibiotics but her ANC did drop from 698 down to 300 even so they are on a pretty strict lock down for Jenn's room. We only get to see her for 3 hours a day because of how the visiting hours are set up at the moment and only Jack and I are allowed to see her at the moment because they are afraid that if they allow a lot of people in, more germs will travel in as well. She still is not allowed anything in her room but as soon as she is we will let everyone know. We are still hoping to have her home by May first but it is up to her and how much she wants to put herself through. Otherwise she can be released as soon as the Staph is clear and they feel she can move without rebreaking the femur. As of right now, only time can tell.
I spent the last hour filling her in on some of the things we know were happening around home but we are still trying not to over whelm her so a lot was left out. I myself will be making a quick trip home next week to get my cast removed hopefully and to walk Kate perform in the musical Grease. It should be pretty entertaining. I think maybe just the time home will be relieving but we will just have to wait and see what is going on here.

Daily Report

So far today has remained pretty calm and quiet. Thanks to Paul and Chandra, I am working on my depression a bit more and today Jenn's doctor set me up with a counselor of my own to talk to tomorrow. He did however think it was a good thing that I am still continuing to read my sister's journals. I will still admit that I was an ass to my Jenn most of her life, I do realize what pain I have caused and the last 8 months have been enough to change anyone's life. Maybe not enough to change my faith and beliefs which everyone seems to be concerned with but like my sister said in her most recent letter to me. It is a choice that I have to make and if there really is a God waiting out there somewhere then He/She will continue waiting until I am ready to make that choice but right now is not that time for me. I still kind of feel that if there was a God then things wouldn't be so bad but at least today things have shown a slight improvement. They have removed to medications that were inducing the coma and they have cut the vent back by 25% throughout the day and other than a quick sharp spike in her blood pressure after taking her of the meds, once it dropped we have had no other signs or worries. They are continuing to monitor and we are hoping that home will be a soon result. I will try and keep you updated and although I still feel that texting updates to EVERYONE is too painful, there are a few that I will still continue to post too. Those being the closest of friends and family so please honor that because I am trying to keep myself sain.

Update and rambles

Today was another day of watching my sister fight but no changes in her status other than her blood work is clear enough to ween her off of the coma inducing medications tomorrow and then we will see how her body copes. They have allowed her body a few days to cope with the recent traumas so as long as the seizures don't start up again the feel hopeful about getting her closer to home again real soon. I am sad to say that taking her completely home may not be an option at this point however getting her into the same nursing home as grandpa is a major possibility at this point and one that I will be looking into further as time progresses. Grandpa is looking at being moved back to the home by the mid next week so we are hoping to have them reunited by the end of the following week.
I did have an unexpected visitor today when Jenn's ex showed up at the hospital holding a letter from my sister that had been sent out a few weeks ago and even though I wanted to through him out, I have so far followed Jenn' wishes of him staying. I also received a phone call from my cousin Chandra who has also received a letter and will be arriving tomorrow as requested by my sister. I have no clue why my sister has requested them but considering today has been a day of little understanding of my sister, I will just go with it as that is all I can do now. I have no doubts in my mind that my sister has some kind of plan for things as she always appeared prepared for everything but I am worried that she just cant let go. That she has fought for us for so long that she is stuck here fighting for a family that I feel might not even exist anymore but she doesn't even know it. I feel so alone here and am not sure that I can handle talking to those that my sister loved anymore which is partially why I have resorted back to this as well. As I continue reading back through my sister's life, I realize that I of all people, have the least right to be here. I have allowed my sister to go through more pain than anyone in my family and even when I knew she was being beat or hurting, I just pretended I never saw it and watched her suffer. I never defended my sister and yet whenever I fell she was there to pick me up. It never mattered that we weren't full blood or that I didn't care for her at the time, she was there and that is what makes her so different. In updating these people, some of them have grown close to me and I feel now that I am nothing more than a fake and I have fought with that all day. Sure I have grown to love and have had the chance to prove true to Jenn since July but I could never expect her to except 8 months of kindness in return for 20 years of bitterness. So I will apologize for the silence now but I feel that constantly talking to people Jenn loves and love her back and trying to make the right choice are just too much for me and I need to really focus here. I don't know what it is that Jenn would have wanted me to do right now but for some reason she did trust me with that choice in the end. Now I just have to figure out why and what is the best choice. I think that with that I better go. I'm sorry if I don't make sense but after 6 months of this constant battle, who could even begin to make sense. I really just want to go home and for Jenn to be there waiting when I get there.