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.
Sunday, May 31, 2009
Wednesday, May 27, 2009
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!
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!
Tuesday, May 26, 2009
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.
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.
Saturday, May 16, 2009
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.
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.
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