Hello Again

I am so Sorry that I haven't posted in so long. Thing had been rather stressful here on our end for some time that we were to stressed to post but now that things are improving and everyone is returning from much needed vacation in while Jenn has us band from the hospital in order to take, I am finding much relief in being back with my sister.
For those who didn't know, my sisters heart had stopped functioning on its own leaving Jenn relying completely on machines again on July 9Th. We had no warning, we just went from joking around to her napping and then to O2 alarms sounding. It was actually very terrifying on our end for all of our family and close friends involved. We were very lucky that the pump they hooked her heart up to kicked in and kept her going. The scary thing is that other than being extremely exhausted, Jenn didn't even know what was happening. She was awake while being on the machines and even though we were glad to be able to talk to her, it was kind of disturbing. we all fought to the very last second about leaving on vacation but she threatened to have us kicked out of the room and floor for the next week if we didn't. (The vacation is a complete other story for a later date, but ugh was it a doosy.) We aren't really sure how things came about but we know that Jenn did receive a heart on July 20Th around 11:30 pm. The heart was from a 24 year old male and although everyone here is on high alert for rejection since Jenn already has the GVHD, so far everything has been going great.
I'm also happy to announce that she is able to eat small amounts of applesauce now and has 2 of 3 casts off. They are still worried about the left leg because there is still a lot of damage and no feeling in it but only time will tell. Jenn loved getting her leg back tonight though and when i walked in, Rob was painting Jenn's toe nails a very epic shade of green with purple polka dots. I'm not sure how Rob got away with the colors but it was cute non the less. I really cant think of what else to update on. I myself am a little behind so for now I will go and if I think of something I forgot I will add it later. Thank you all for your prayers. Jenn really is a miracle for our family and we appreciate everyone helping up pray. So until next time...Good night.

Crazy few days.

I am guessing it is safe to say that things might be picking up real fast here on our end. Just since the last post things have been crazy. Jenn's tests came back clean from the staph infection and they also came back clean to the point that it was now marrow time. Yesterday they reconstructed what was left of the left leg, which is going to lead to a very brutal rehab later once we get further along. At least she gets to keep it though. She currently has a soft cast on the left leg and they put the hard cast back on the right leg and for those wondering, it was another Tye dyed one. We are keeping her bright. lol. Today she was given more of Mike's marrow which took us back to Day 0 of our wonderful waiting game here in Boston. They were also trying to test her lungs to see if the steroids helped and she was able to comfortably breathe at least 10% on her own. It was almost 15% but she was really pushing herself and after awhile her O2 stats started dropping so they had to boost it back up. Each day they are going to aim for a bit more but they don't was to strain the body anymore than needed. They did take her off of the medications they were using to keep her heart on rhythm and so far the only changed were that her heart rate dropped after surgery yesterday and hasn't changed much since which is good. They said it is normal considering everything they had her on and the recent traumas to her body. She is awake here and there and already getting angry with me for eating Arby's without her. If looks could kill, I would be dead after this afternoon for sure.
I think otherwise the only other things to mention is that Mike is doing good and very proud of his marrow right now. He is a little sore but I think his Big Head will keep him going for awhile to distract him. Rob is also on his way up here tomorrow from DC so Mike is entering the protective little brother stage. Rob is one of the medics who has been kind enough to help us transport Jenn when we needed to get her between hospitals. He is also a college friend from the past and now current boy friend. We will see where this goes but otherwise we just have to take everything day by day.

The Update I have been Promising.

I am so sorry that it has taken me so long to finally sit and update. I have really been having a hard time staying focused on top of keeping my family itself updated.
I will just cut to the chase and tell you all that things are not good. In the last 2 weeks Jenn has been fighting a very severe Staph infection that left her relaying on machines to keep her alive. They put her into an induced coma to keep her stabilized until the infection was treated and gone however now every time they try and remove the drugs inducing the coma, her heart goes haywire and for a few days did nothing but try and crash every few hours. Her heart did manage to get through the last 24 hours off of the coma inducing drugs and they tested her lungs today. She was in respiratory arrest as of the 20th which is why she is back on the vent and they weren't too worried up until this week. She has had spouts in the past with "falling asleep" on her own and not waking up or breathing well for weeks and she would come around but today they tested her lungs and at this point her left lung is too damaged and her right lung is too weak to support life so they had to boost the vent back to 100%. They did tell us that she was trying to take baby breaths when they were testing but they were too short to actually gain anything. They added a steroid to her antibiotics to help with her lungs to see if anything improves over the next week and are otherwise still keeping a close eye on her heart. She has yet to respond in any way since they stopped inducing the coma but we were told that she is still epically critical so it might not happen any time soon. At first they were wanting to give Jenn the marrow needed to help support the healing of her bones this week but with the current conditions everything is pushed back until further notice. There needs to be a major improvement before they can move forward however they will remove this set of casts on her arm and legs as planned to make sure everything underneath is still where they would like it. They are keeping a close eye on her legs still as well. So far so good from what we here in that area though. Otherwise there still isn't a whole lot I am can think to tell anyone else. I very well may have forgotten a few things so I apologize now. I will try and keep up more but it has been a difficult time.
Thank you all for your prayers and support.

Really Quick

I know I have been promising and update but things have been so crazy that I havent had much time to do anything. Tonight I am going to catch up on my sleep and first thing in the morning I will give you the huge update. Thanks to those who have been sending the texts. For those we asked to hold, its only until things start picking up. Our family is under a great deal of stress right now but thanks for understanding. So until tomorrow...

Not So Good Day

This morning I was woken up to the sound of 2 phones going off at the same time and just about fell out of bed. I don't know if I could just tell that something was wrong or what but I already started feeling sick before I saw it was the hospital. Sue and I both received phone calls around 6 saying that Jenn's heart was crashing and they needed to get it back on track fast, so praying and panicking at the same time, Sue and I managed to get dressed and get phone calls made while driving. (No people, I was not driving while texting and calling you all so be epically proud of me.) I sat around most of the morning today waiting to hear anything at around 10 we found out that she had suffered a heart attack, hopefully in her sleep, but they cant be sure because she was in bad shape when the alarms started sounding at the nurses station. Her heart was off rhythm and because her heart has a tendency to try and pump backwards and build up pressure, the pacemaker wasn't able to correct it. I cant say that we are shock since this has happened before but not even two hours after finally getting it calmed down, her heart suffered another attack and so they had to go in and relieve the pressure. We haven't been allowed in her room all day and they are still unsure about tomorrows events but the staff here is really skeptical about what is going to happen in the next few months. Things may have to slow down a bit which means a long stay and I am not sure how that is going to go over considering we are already looking at being here until March. My sister and her kids did make the long drive back here today to help sit everything out with me but what it comes down to is needed a new heart. It was stressed again today, to the epic extents that her heart cant handle any of this; however we don't have many options in our case. We really need a lot of prayers here guys. The next two weeks are expected to be some of the worst and they cant say much better for the few after either. We are praying our hearts out here tonight and hoping for better news tomorrow. We will keep everyone update.

Finally A Great Day.

Considering everything that Jenn has been through in the last few months, no one really expected the last few weeks or even days to end like the did today. Today was just an Epically Awesome day all around. Nevermind that I slept through almost all of it because Jenn woke me up at 3am and kept me up ALL NIGHT! She was however a happy bundle/bed full of smiles and joy today. I am happy and surprised to report that her head hurts less today than before the surgery and other than just the general pain, her leg is really the only thing that is causing severe pain. She is off the vent and talking to us. She was cranky at first because she wanted water and they wouldnt give it to her but they have finally okayed ice chips and she is doing ok with those. When we left at 9 she had just fallen asleep which should be for a good few hours considering all the people she talked and laughed with today. She was tired when we started watching Finding Nemo but was very content. So I should also extend a very large and greatful Thank You to all who made her laugh and smile today. It is a Blessing and makes things easier on her.
I wish I had more to report tonight but I really did sleep most of the day. I was very poor company to my sister. lol. She understood though which is good since she is the one that caused it. lol. Well I will let you know more about whats happening tomorrow. Thank you for your prayers and support!

We Really Need Prayers

I think today had to have been another one of the longest days of my life. I actually think that it might even top yesterdays epically long day. The day started out really well. No one really knows what time Jenn started waking up but about 9:30-10ish she managed to ring for the nurse to come in which started a morning full of examinations and follow ups. They gave her a dry erase board to try and write to us on which works out really good but she is really tired still so doesn't get much on very fast. By 10:15 she had already insulted the surgeon doing his follow up by telling him to smile and that it would increase his face value. I am not sure where it came from but I had to laugh even though He didn't think it was so funny. Sue just about died watching her struggle to write it. They were very pleased with her progress this morning and the fact that they were able to lower the vent down to 45% with minimal problems. For the most part Jenn has been listening to the boys talk while they were visiting and was excited to see her dad this afternoon. She didn't want him to leave the room but we are only allowed in 30 minutes every 2 hours so she had to let go. Otherwise she is sleeping. She is pretty sore and tired and even though she never tells us, I think we wore her out today.
The reason I am asking for prayers is because today we were given some answers to some of the majors questions that have been lurking around about Jenn's status for the last few days, regarding receiving new marrow, how long we would be here and if she would get to keep her legs and what not. Regarding her legs, at the currently moment they did see some slight signs of improvement in the skin however they are still unsure of her left leg. They keep holding off but they have already reconstructed her leg in the past and really cant repair it much more and still have a functioning leg. The left leg has been broken and fractured an epic amount more that the right and therefore leaves less to work with. They are going to continue monitoring them daily and we will see in another week were we stand. Now for the kicker. They pulled Jenn's Dad, My Brother and I into a meeting today to discuss the possibility of giving Jenn more of my brothers marrow to try and not only kick this cancers butt but to help reconstruct her bones since the first BMT was unsuccessful as to where cancer cells took over again. My brother has agreed to do whatever he needs to help Jenn but this is at a stand still until they can determine if 1. the tumors inside her liver are active or dormant and they can get a new liver to prevent them from spreading again (they cannot remove them); and 2. Jenn will have to go through 3 complete rounds of the radiation and Chemotherapy that they were currently working on to kill off remaining cells that were not removed from surgery. They main concerns for everything not including the liver are whether her heart can with stand the abuse and if they can continue to keep the GVHD that developed with the first BMT under control to avoid to same complications she has had so far in the past. They have just recently gained control of it, we don't want it to cause any more problems. We have discussed it all with Jenn and she just got a very sad or worried look in her eyes and all she said was she will do what she has to but she is very tired. So I think what I am asking is just prayers for strength. I know many of you have been praying for it all along but tonight I think she needs it more than most days. This has to be so frustrating for her because it means that we are basically starting from scratch and we were told that we wouldn't be home until the beginning of March maybe April which is more heartbreaking considering everything she will miss back at home. So if you could please just send up an extra prayer for strength and comfort, I would really appreciate it. I know I have been praying most of the afternoon and evening as I watched her wear out.
I will try and post again tomorrow but things should be pretty quiet this weekend with family here and it being the weekend. They are basically just pushing her to rest. I hope everyone else gets out to do something fun. Feel free to let us know if anything else happens around us that is exciting. You can leave the messages here on email us. Sorry this is so late and Thanks again for all your prayers and support.

Short Update

This will be the short update because I am exhausted from all the pacing that I did today. Jenn got off to a rocky start to surgery but otherwise things were managed to work out fine. Her blood was still a bit thinner than they had hoped but they didn't know until they had already opened her up. She was in surgery for almost 7 hours and then recovery for 2 but they were successful in removing all that was visible to them. They are very confident but still say that they would recommend at least 3 radiation session after which doesn't matter because she is already set up for them for her back and hips. The medications they had her on to keep her sedated have been lifted because they want her to wake up on her own. As of 10 minutes ago when I left her room, she hadn't opened her eyes but they said it could be anywhere from 12-32 hours before she would because of all the meds having the wear out of her system and how worn out her body is. She is back in the ICU until they get permanent room set up for her.
Tomorrow is going to be a semi busy day here since Grandpa, Meg, Jenn's dad and Mike are coming. Dr. H is going to be talking to Mike about the marrow again and we will also get our finally decision on Jenn keeping her leg. We are keeping out fingers crossed but when if comes down to it, we were warned in the very beginning she might loose it and it would only be a matter of time before it HAD to go. We will know more tomorrow about the game plan from here and I will update you when I get the chance.
Thank you for all your continuous prayers and support.

Big Day Tomorrow

Today was a pretty quiet day. There weren't really any changed in Jenn's condition which is a very good thing in our eyes. They are very pleased with her stats and she continues to do very well on her antibiotics. I met with Jenn's Med Team this afternoon and her surgery to remove the tumors in her head was moved up to tomorrow based on the fact not so much that the surgeon had time but rather on the fact that he wants to be here for the first 24 hours after and wont be in town this weekend. I couldn't help but laugh again today when the staff referred to my sister as Smiles and was talking about having her up and horsing around again soon. Her surgery will take place around 8am and is expected to be anywhere between 4-5 hours. I'm surprised and happy to say that other than two small holes, the third (main incision) will only be 3 inches wide. I was kind of nervous about how extensive it would be. I am still a little nervous about Jenn's surgery but I trust that she is in good hands and started worrying more about Her dad who is flying 13 hours over oceans tonight. I had completely forgot that His R&R started and that he was coming. I am praying for his safe flight. Especially after that other plan just vanished. All in All, He should arrive in Erie around 6am and will be here Friday morning with Jack, Grandpa and Megan. My parents cant make it because Katie has strep throat so if you could say an extra prayer for her, we would appreciate it. She is pretty depressed about not getting to come. Otherwise I think that is all to report. I will try and update tomorrow if I get the chance otherwise I will update as soon as I can Friday. Now its sleep time! Good Night.

A Very Good Day On a Bit of a Personal Note

First I would like to say that we have finally managed to get good news. Not only did I manage to finally get a night's sleep but when I went in to see my sister for the hour that I was able to this morning, I walked in to see a room full of monitors and machines like always only something was very different. For the first time in months, my baby sister's stats were at a close enough to normal range to be back on the charts. They even managed to get her heart to beat on a steady rhythm all day! Her counts were all still at 0 and they did have to give her some blood today but we were told her body is responding well to the antibiotics so everything should be set for Friday's Surgery.
The only other health thing to report is kind of funny although it wasn't suppose to happen. They have been giving Jenn meds to relax her muscles so she doesn't breath on her own, to allow her lungs to rest and either the round of meds were wearing off or the dosage was too low but all the sudden Jenn had an alarm going off because she was trying to breath on her own but against the vent. I know it sounds serious however it is just her showing how stubborn she is and I laughed (I really cried) because it was the first time in a LONG time, an alarm was showing something good in my eyes and not bad. They did fix the problem but they are going to examine her in the morning and possible turn the vent down a bit and allow her to start assisting with the breathing. They are wanting to really watch with the condition of her lungs right now but even they don't want to fight it, if she is starting to pick up on her own.
As for the personal note, today was very uplifting for me because finally having to time to sit down with a bible and study and pray (with the many of you that are praying with and for us), I know that I owe today to God. I cried when she started fighting to breath because I knew for a fact that God grace gave her the will and strength to fight when she is barely the girl we new in September when this all started. Something that hit epically hard today was a text that I received from "The Puppet Man" a few days ago which basically said that when Jenn is sleeping, It is her time with God and last night I laid up thinking because I realized it is true. Back when this all started, one of the first times my sister woke up and couldn't talk, she started writing to my on a glove. At first I didn't know what it meant but as she got stronger and started singing again I realized they were the lyrics to a song that she always sings. The lyrics on the Glove were "...my heart aches, my body longs, I cry to you, restore my song again. How can I find you Lord, Your all that I adore..." Now first I should mention that I was really confused because it isn't like the chorus part of the song but half a verse and part of the chorus, which had us stumped until we realized she was singing in her head. Not so much to use, but using her prayers and songs to calm herself down and fight.
The reason I am bring this up is because today i received a package and a letter from my grandpa that said, "You will need these" and inside was a handful of butterflies and all her Casting Crowns Cd's that she used to drive me nuts with in the past and that's when the picture of Namesake(Jen) and Jenn popped into my mind from 2 years ago sitting in Jenn's room listening to Casting Crowns or as Katie calls it; Jenn's theme song, which is the I'll Praise You in the Storm. It's strange but I see now that I have a sister who is so wise in her years and pray that she will be able to recover and answer so many questions that I have. I also get now that she uses her music to express herself so in the future I am going to have to pay closer attention to what she is listening to and not mind it so much. I still may not understand why God is allowing her to have such a hard time of things but I am sure there is a reason and I am finally admitting that I am leaving her to him and letting go. It really isn't my fight nor is there anything I can do but pray and support her.
So I guess I am finished rambling now and should go do the dishes for Sue. I am very thankful to have a place to stay and I enjoy spending time with Sue and her 16 year old daughter Ashley. Ashley seems pretty close to my sister and I found out last night, helped aid in some of the past crazy adventures before my arrival here in Boston. It is nice to see what my sister did in her spare time. I always wondered. lol. Ok now back to those dishes.

Another surgery with 4 more lined up?

So we aren't sure what to think right now so we are just holding out breath here. Jenn is quietly tucked away in the ICU after another surgery again today with another lined up on Friday. They finally managed to get her fever down to 101 before her lung collapsed and when they were forced to open her up to remove some tumors compressing the majors organs before her heart and lungs ran out of space to move completely (that is what was happening, they were being compressed). 24 lbs lighter/ almost 12 hours and 4 different surgeons later, they had most of her chest cavity and abdomen cleaned out and part of her legs as well. They are still waiting to decide on the legs but they think at this point the right leg might have some hope and they aren't holding to much hope for the left because of the number of fractures it has suffered in the last few months. There really isn't a whole lot to hold it together anymore. They even managed to clean out almost everything around her heart which took a miracle in itself because so far they haven't been able to keep her stable long enough. The only thing they are very cautious about now is infection because she already has 2 going on and now they are dealing with surgical sites. Because of the lungs and extent of the surgery they have given her meds to prevent her from breathing at all on her own until next week. They don't want to start sooner because they will be removing the tumors from her brain on Friday if everything goes ok until then and want her lungs and heart to have a chance to rest and not strain further.
I think the only other thing that I forgot to mention was that other than the surgery on Friday she will need one to work on her back and then 2-3 more for the legs. We were told she definitely wont be walking for a long time but we all expected that. Then ones the surgery on the back, chest and head heal a bit we will work on getting back on the radiation course and working more with Mike's marrow.
We know that whatever happens is in God's hands and although I may have a problem with wanting to let her go completely to Him, I know He is taking good care of her.
We are just taking it one day at a time, giving up one struggle at a time.
Now I am finally off to bed after a very long 2 days. Good Night and thank You for all your prayers and Support.

24 hours of Hell

I am sorry for the title but the last 24 hours have been nothing short of hell for not only my sister but my family and the staff here as well. Since September of 2008 we have been on a non stop fight to get my sister home and back on track with life. We always get here there and see progress but then end up right back to where we started from. Last night was another one of those. We knew that we were looking at definitely loosing the legs for sure this time if things didn't pick up very fast with all the damage to Jenn's body but yesterday after received radiation again she started seizing on us again because her body was retaining to much pressure. About 11pm last night Jenn was taken into surgery to relieve pressure and blood from the legs, stomach, one of her lungs needed drained and to drain the pressure building at the base of her skull. She didn't get back to the ICU until almost 9am. (No there was no sleep involved last night.) She is in a coma for the next 10-12 days that we know of but she is also suffering a staph infection and another infection in her blood that popped up today. Tonight they are still working on getting her fever of 104 down but so far haven't had much luck. Sadly we are only allowed in for 1 hour throughout the day because of her status and so I am not able to hold her hand this time because of the constant care being given.
I know that I am knew to faith and everything but I have spent the last 24 hours just praying for any kind of break. I am asking now that anyone who prays please pray for healing of the infections since Jenn doesn't have an immune system to fight them off herself at the moment so we can get back on track with everything else. Loosing her legs of so much smaller than the damage that can be cause from these infections. I am updating the best that I can but I am practically living in the waiting room and can only get on myspace when I am at Sue's house and I am the only one here until Saturday, so this is the best means of updating. Thank you again for all your prayers.

Our little Blueberry

Today was a pretty quiet day after a night of puking constantly with a morning to follow. Once they finally got Jenn calmed down and cleaned up, she was able to get about 2 hours of sleep before they took her for the Pressurized Oxygen Therapy. They only had her in few a few hours (2), which is half the time but it made all the bruises and some that we hadn't notices as much before, stand out vibrantly after the therapy. She is starting to look like a borderline blue berry or as she calls it, Barney. Her Color is still very bad and she is miserable but we are taking it one day at a time. All Counts are at zero so nothing is allowed in the room at the moment which wasn't already in and okayed by the staff here. Once things are allowed I will Let you know what it is and where it can be sent.
Thankfully I am staying with a nurse here in the hospital and her 15 year old daughter who are also friends of Jenn's. It is semi relieving to know that not only do I have a place to stay but the people I am staying with understand what I am going through and when i don't understand something, Sue explains them to me. Sue lives about an hour away from the hospital and owns a farm so we were discussing tonight about allowing me to work in the stables in exchange for living and that. She is even willing to give me riding lessons if I have time so I am hoping that once Jenn starts getting back up to par and the weather gets nicer, riding will be possible. I cant wait to tell my sister first thing tomorrow. Maybe she will be in a better mood as well.
Well I think I am going to head to bed. It has been a long day and I need to be up bright and early to get back to the hospital. Thanks for all the prayers and support. They are working!

A Single Ray of Sunshine Through the Storm

For those of you who know my sister, and I mean really know her; you know that she is all about three things; Snow, Sunshine and Butterflies. To her all are symbols of hope so I think that saying we finally got a small answer to our prayers would be appropriately stated as our single ray of sunshine in this major storm Jenn is facing.
As most know, a few weeks ago my sister went from her "normal fighting" self to not eating, then to semi responsive and very much unresponsive and barely breathing on her own. We sat at home where she claimed she wanted to be with a tube down her throat yet again just waiting for what the keep telling us the end is. We know and can see in the scans and in Jenn's actions that her organs are being compressed. A feeding tube was placed directly into her stomach because she was unable to eat on her own and still continues to puke at the moment. We went through days and nights of sitting next to her bed with a suction unit to make sure nothing came up not because of a gag reflex but because her organs were actually being compressed enough to force the nutrients back up through her system. We were at a loss between vomiting and alarms from her heart going off. At one point we were even told, after testing that, not only were the tumors compressing the organs but she had minimal brain function. Thank God the doctors here misplaced the probes for that because shortly after the test she was still trying to reach out to us by squeezing our hands and occasionally opening her eyes. It was as if she was just opening us to let us know that she was still here and still fighting. We have gone through days were we didn't think she would make it because her breathing is so slow and although it has picked up a good deal, she still has a lot of aid to breathe and still remains a grayish color.
Around the 17Th/18Th I started noticing some bruising in different spots on my sisters body and we were very careful because we thought it might be bed sores or more fractures so after they became almost black and looked more like blood blisters they transferred her one more time to the hospital to try and find the cause and drain the pressure which is how we ended up back in Boston. The bruises were small fractures however the bruises itself or the blood itself had proof that the small dosage of chemo she was still on has made progress with Mike's marrow in the areas where the bruising was. We were so excited but so lost at the same time because we honestly don't know where to go from here. Jenn is in a lot of pain and has fought so long and cant really defend herself but clearly stated that she wants to fight until the end so that is what we are doing. We are going to continue on the chemo however we are allowing her body to take it slowly and work on one area at a time. Since the marrow is trying to fight they are going to continue that route and hope that radiation in between will help the organs. This is going to be difficult because she is also going to have to have Oxygen therapy again where she is put into a chamber to oxygenate the body and it takes a lot out of her also but her organs need it. We don't really know where we are going from here and we are told that she can still go at any time as her body is epically warn down but we still need to continue to pray. If they can allow the chemo and radiation to take off they would like to try and give Jenn more of Mike's Marrow to help regain her bone structure.
The end of last week and Partial weekend was 3 days of intense radiation where Jenn was kept under sedation and it was removed Sunday night. She has been up a few times since but after tests taken today and family visiting yesterday she has been sleeping most of the time. She says she will continue to fight as long as she can and the smile I got tells me that she will so that is my ray of sunshine that I will hold onto.
We have either a very long road ahead or a short journey to follow. It is in God's hands right now and that is where we leave it. Please continue to pray with us and for our Snowflake.

A long Update Over Due

I am sorry that it has taken be so long to update. I have been on pins and needles with everything that Jenn has been going through lately. We have had a lot of good days up until recently where her cancer has just taken over so much that her organs are finally shutting down. About 2 weeks ago, we started having problems trying to get her to eat and then a week ago Friday she went unresponsive on us again. Throughout this week we had a few hopeful moments because one day she managed to squeeze some of our hands and then Thursday her eyes were open but after that we have experienced a nightmare with her being unresponsive and vomiting for almost 7 hours straight because tumors are compressing her organs so much.
Over the last week her breathing and heart rate have steadily dropped and this morning she was again returned home because that is where she wanted to be. We were told yesterday that she has minimal to no brain function due to the lack of oxygen being carried throughout her body. Sadly it is only a matter of time now before she passes so if updates are few and far between that would be why.
We will let everyone know when if happens so those of you who planned on coming in for the service have time to get here.
Thank you for all your prayers and support.

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.

Here We Are Again, You in Spirit & Me in Regret.

So here we are again, in the oh so wonderful city of Boston and many of you are asking why. I had to make a rash decision on my own because I am one of the people that Jenn trusted with her care and because of that I chose to do what I felt was best for her. One of Jenn's final wishes was that she be able to go home when it was time and those in Pittsburgh was unable to give Jenn the care she needed so we were transferred to the hospital that could best meet those needs and eventually get my sister home. I am finding today that being here alone with my sister in spirit and having time to actually read the rest of her journals, that I might actually be ok with all of this. I am still not sure how we got to where we are, with my sister clinging to everything she possibly can to survive and my family split so far apart that we might as well just consider dividing into the 3 separate house holds that we have become but here we are anyway. Our family is so screwed up, that I am finally seeing just what Jenn had to put up with since she was the middle ground that tied most of us together. She didn't really belong but was always there to piece things together and help us figure things out when we needed too. I guess I never really gave my sister a chance as a kid and as I read more about her life in college, I cant even say I deserve to even be a part of her life after what I watched and allowed her to go through. I have failed my sister in many ways but for some reason she never left me or any of us behind for that matter. Not only did we leave her to figure life out for herself but we expected her to figure things out for us as well and now when she needs us the most, it feels that most are abandoning her yet again.
My sister has spent most of her life alone and yet somehow had the faith that could move a mountain and I never understood her. I have never been a woman of faith myself but always felt that if the God she claimed loved her so much really existed then why would he deal my sister such a shitty hand in life. Parents who walked out and left her with us, always getting into accidents, breaking bones, bad relationships, watching people one after one die right in front of her and now even in sickness herself she clings to this power that still seems to drag her through Hell and for what? I'm not sure that I understand or that I ever will but that doesn't change the fact that I am here. Through a crazy twists of events starting with a poorly mopped floor and a broken hip almost 8 months ago, I am glued to Jenn's side just trying to understand. Trying to believe that if there is a "higher power", then she wont be taken away from me just as I am starting to get to know her and love her so much. Just when I am starting to learn so much more about myself and life in general. I am realizing more now that maybe we don't deserve my sister in our lives and maybe that is why thing are going the way that they are. Maybe we have just gotten so comfortable with her always picking up after us and fixing our mistakes and making the come backs that when she needs our support the most, we just walk away. And yet she still keeps fighting for us. For those of us who continue to hurt her even when she isn't able to see and hear us. The same people who have gone back to referring to Jenn as not one of our own but merely an addition to the family left behind by another, even though Jenn has never referred to us as anything other than family. Thinking back now, as I read these journals and remember events through the years; I cant think of one person that Jenn didn't treat like family. Even if they hurt her, she would turn around and treat them no different than one of us. That is what made Jenn my sister and my friend even when I didn't see it. In one of her journal entries from college, she had to write a paper in college about her family heritage and it was a very short paper because like so many people in this world, my sister wasn't able to trace very far back. She simply states in the beginning that she is the last in her family which is sadly true. Although she is not the last of her father's children she is the very last of her mother's and my aunt. Different forms of Cancer and disease have eaten away at our family and Jenn is the very last of that branch which is why I think my Grandfather holds onto her so close. Jenn is the very last bit of my aunt that he has left and in her own words she understands this. "My Heritage has set a standard for me, and I feel honored to uphold it." The only standards I feel that could have been left are that they were stubborn, faithful fighters to the very end and although I may not believe in all the same things that she did, I am still here tonight because I do believe in the standards she holding onto and want to help her in that battle because she is the last. We need to hold onto that for as long as we can, that is why I am here and will continue to be here, even if I am alone.

For those who just wanted the medical updates:
Jenn did make it through surgery yesterday to much of everyones' surprise. They made her sound like an art project with all the fusing of bones and stitching they had to do. They needed to give her quite a bit of blood but they have finally been able to return her heart back to a normal "Jenn" rhythm which many of us know is one of her very own. Her hearts is still week and all her stats are still dangerously low so she is still on constant watch. They are waiting for the antibiotics to completely kick in for the infection she picked up in Pittsburgh and then will start weening her off the coma inducing drugs and vent shortly after. After this, we will discuss bringing her home. This is a day that I have been waiting for, for what seems like forever! (Unfortunately my car died today on the way to get something to eat so lets pray we can get that fixed soon. Until then I am stuck with hospital food. EPIC FAIL!)
On a happy note, I received a call today that my grandfather started opening his eyes but still continues to show no movement from the next down after suffering two strokes. He suffered the second one a few weeks after being moved to a nursing home and was moved back to the hospital. He has only been back at the home 2 days until he opened his eyes today and now he is back in the Hospital in Erie, for tests. We will see where he will go from there. I am really considering having him also moved to the house once Jenn can be moved home and taking care of them both full time. I think it is what both of them would have wanted. I am still waiting to hear the results from the tests but considering my parents are a bit stern with me on moving Jenn, I am not sure when that will be. Ah the joys of family rivalry.

*note*I am sorry that I had to resort back to this thing but I need a place to write and keep my thoughts and I am unable to access myspace while I am actually in here. Another Epic Fail. Katie will do her best at filling that in though. Thanks for being patient with me. You can always try texting. I am pretty lonely at the moment. I am really starting to feel alone in this.