Jennifer K Baker Updates

Special Day Coming Up

2007-06-11T07:49:00.000-04:00

Hey everyone....quick news. I wanted to let everyone know that Jen's sister Marie is getting married this coming Saturday. Please keep her in your thoughts and well wishes...

Thoughts and Thank Yous

2006-10-10T10:06:00.000-04:00

It dawns on me as I post this morning that it has been two months since Jen left us here...I can't say that time has healed any of the hurt and pain...in some ways it feels like it has only grown stronger. There isn't a day that goes by that I don't miss her terribly, and the house feels particularly lonely on the weekends. I have shed many a tear, and imagine that thousands more will be shed before things begin to look back up. I want to thank everyone for the thoughts, prayers, cards. I especially appreciate all who attended the memorial services, as well as those who graciously made contributions in Jen's name to The Leukemia and Lymphoma Society. I know some have done the Light the Night walks, and I can not express how much it means to me for people to keep Jen's memory and spirit alive. I'm sure I could write forever, but as I am doing this at work, I will wrap it up for now....please check back, as I plan to post some more.

Jeremy

The Times-Union Obituary I wanted to run...

2006-10-10T10:04:00.000-04:00

This obit is a little different than the one that ran in the paper....cut some to save on the cost...

<<
Jennifer Knapper Baker

Jennifer Knapper Baker, 28, died from complications from a 7-month battle with Acute Myelogenous Leukemia (AML) on August 10, at Johns Hopkins Hospital in Baltimore, MD. She lived in Arlington, VA.

Jennifer was born February 12, 1978 in Kalamazoo, MI to Robert K. and Janice K. Knapper. She graduated with a Bachelor of Science in Environmental Science from Allegheny College in 2000 and with a Master of Education in Student Personnel in Higher Education from the University of Florida in 2003. As a student, she worked as a Resident Advisor and Resident Director at Allegheny College and as a Graduate Hall Director at the University of Florida.

Jennifer was united in marriage to Jeremy J. Baker on June 21, 2003 at Atlantic Beach, FL. After returning from her honeymoon, Jennifer worked as an Area Coordinator at The University of North Florida in Jacksonville, FL from 2003 to 2005. While living in Jacksonville, Jennifer loved making weekend trips out to the beach. She also enjoyed spending time with her friends and family, as well as going to Suns and Barracudas games, and following her beloved Florida Gators. Since June 2005, Jennifer served as the Assistant Director of Residence Life and Judicial Affairs Manager at Marymount University in Arlington, VA.

Jennifer belonged to numerous professional organizations within the higher education field, including SEAHO, ACUHO-I, NASPA, and ACPA.

Jennifer is preceded in death by her father, Robert K. Knapper. Jennifer is survived by her husband of 3 years, Jeremy J. Baker of Arlington, VA; her mother Janice K. Knapper of Kalamazoo, MI; her sister Marie A. Knapper of Kalamazoo, MI; and a long list of extended family and friends across the country.

A memorial service for Jennifer will be held on Saturday, September 9 at 1:00 PM at Sacred Heart Catholic Church, 5752 Blanding Blvd., Jacksonville, FL 32244. The family requests that donations made in Jen’s memory be forwarded to The Leukemia & Lymphoma Society, Donor Services, PO Box 4072, Pittsfield, MA 01202.
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Gainesville Sun Obituary I never ran...

2006-10-10T09:53:00.000-04:00

Hey everyone...not sure how many of you still check the site, but there are some things I have been meaning to post for some time now. I really wanted to run two obituary notices down in Florida, in the Florida Times-Union for Jacksonville, and The Gainesville Sun. Unfortunately, obituaries are EXTREMELY expensive to run in newspapers, and I figured Jen would kick my ass for spending as much as they were asking for. Here is what would have run in the Sun:

<<
Jennifer Knapper Baker
College Administrator

Jennifer Knapper Baker, 28, died from complications from a 7-month battle with Acute Myelogenous Leukemia (AML) on August 10, at Johns Hopkins Hospital in Baltimore, MD. She lived in Arlington, VA.

Jennifer was born February 12, 1978 in Kalamazoo, MI to Robert K. and Janice K. Knapper. She graduated with a Bachelor of Science in Environmental Science from Allegheny College in 2000 and with a Master of Education in Student Personnel in Higher Education from the University of Florida in 2003.

In her two years of study in Gainesville, Jennifer worked as a Graduate Hall Director for both Jennings Hall and Beaty Towers. She was heavily involved in the Department of Residence Life, serving on numerous committees and earning a number of awards, including Advisor of the Year and the ROSE (Recognizing Outstanding Student Employees) Award. Outside of her job and studies, Jennifer enjoyed attending Gator football games and seeing gators in the wild. Some of her favorite spots were Lake Alice, Lake Wauberg, and the Alachua Sink.

After graduation, Jennifer was united in marriage to Jeremy J. Baker on June 21, 2003 at Atlantic Beach, FL. After returning from her honeymoon, Jennifer worked as an Area Coordinator at The University of North Florida in Jacksonville, FL from 2003 to 2005. Since June 2005, Jennifer served as the Assistant Director of Residence Life and Judicial Affairs Manager at Marymount University in Arlington, VA. Jennifer also previously worked as an Area Coordinator for Hobart & William Smith College in Geneva, NY, from 2000 to 2001.

Jennifer belonged to numerous professional organizations within the higher education field, including SEAHO, ACUHO-I, NASPA, and ACPA.

Jennifer is preceded in death by her father, Robert K. Knapper.

Jennifer is survived by her husband of 3 years, Jeremy J. Baker of Arlington, VA; her mother Janice K. Knapper of Kalamazoo, MI; her sister Marie A. Knapper of Kalamazoo, MI; and a long list of extended family and friends across the country.

A memorial service for Jennifer will be held on Saturday, September 9 at 1:00 PM at Sacred Heart Catholic Church, 5752 Blanding Blvd., Jacksonville, FL 32244. The family requests that donations made in Jen’s memory be forwarded to The Leukemia & Lymphoma Society, Donor Services, PO Box 4072, Pittsfield, MA 01202.
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Jacksonville Directions

2006-09-02T23:08:00.000-04:00

For those who need directions in Jacksonville...

Sacred Heart Church
5752 Blanding Blvd
Jacksonville, FL 32244

Scott & Susan Hause
4826 Ducheneau Dr
Jacksonville 32210

Kalamazoo Gazette Obituary

2006-08-20T20:00:00.000-04:00

Here is the link for Jen's hometown newspaper obituary:

http://www.legacy.com/Kalamazoo/DeathNotices.asp?Page=LifeStory&PersonId=18919876

A good resource to find all obituaries for Jen is at www.legacy.com

Jeremy

A General Update

2006-08-18T18:55:00.000-04:00

Hi everyone...I figured I would finally post an update. Obviously this has been a difficult time, filled with sorrow and laughter, and a deep sense of loss. That Thursday will be burned into my memory for as long as I live.

The day started out early, around 6 AM, with a great sense of dread, and many tears knowing the events planned for later that morning. The doctors came in around 9 AM, confirmed the plan to remove the breathing tube, and left us. The folks from respiratory came in around 9:45 AM, and the process of removing the tube was fairly simple. We all gathered around Jen's hospital bed, fearful that her body would not continue breathing without assistance. There were again a lot of tears, silent prayers, and we held on to Jen's hand, wishing for one last squeeze. Jen did continue to breathe, and was still fighting and hanging on as the first hour slipped by. The anticipation of that first hour left each of us in the room (Marie, Jan, me, my mom, and Jen's Aunt Sue) a little drained. After an hour, maybe an hour and a half, Jen began to cough, eventually expelling a blood clot. They had not warned us that the removal of the breathing tube had probably cut the back of Jen's throat. In her condition, she could not stop the bleeding. I don't even remember how much time elapsed, but the coughing fits continued, and Jan and I simply went into crisis mode, helping the nurses suction the blood Jen was coughing up. The nurses had tried to suction through Jen's nose...unfortunately, all they accomplished was creating two nose bleeds that we tried in vain to stop. After what seemed like a lifetime, we managed to get the situation "under control".

As fate would have it, the Operating Room that day had an emergency that required all the hospital's platelet supply, or so we were told. There would be no help to curb Jen's bleeding. The situation was calm enough to allow Jen's co-workers Wendy, Heather, and Jill to come in and visit one last time with Jen. The hours ticked by, and amazingly Jen's body continued to breath at a steady rate. In my head, I started to plan to be up all night, and as long as it would take. All the coughing fits and bleeding had required that Jen's medicines be upped to keep her comfortable and as free of pain as possible. I asked the nurses to increase the meds throughout the afternoon as it looked like Jen was laboring slightly and looked to be in some pain. I don't wish the responsibility of making that call on anyone...it is agonizing, and you second-guess yourself constantly. So much happened...I had a few moments alone with Jen, where I let her know how much I loved her and how much I would miss her. I prayed for her to gain God's grace, and be in peace. Around 3 PM, the bleeding returned, and we once again snapped into crisis mode, taking care of suctioning and cleaning the blood up. The day was slightly frustrating...the nurses and staff wanted to give us our space and time with Jen, but she needed their attention, and at times I wondered why I was the one doing all of this. To be clear, I don't regret or resent anything that I had to do that day...I promised to love Jen in sickness and health, for better or for worse, until death do us part....I intended to live those words, and I would have done anything to give her a sense of peace that day.

Around 4 PM, Jen's breaths started to change, and I whispered that it was ok for her to go. It is hard to describe the feelings you have at that point. I never wanted to let Jen go, but I was ready to see her in peace. Things continued to deteriorate, and with her family and loved ones beside her, Jen passed around 5 PM. There were plenty of tears, sobbing, hugs...no matter how hard you try to prepare, there is nothing to make you ready for that moment. After we faced the task of saying goodbye, and cleaning out the hospital room.

The past week has been surreal. Jen's family left on Wednesday, after we went to Baltimore to gather Jen's ashes. We spent time before that organizing the house in Woodbridge, looking through pictures, and trying to take care of the inevitable tasks death requires. I returned to work on Thursday, and had the Marymount memorial on Friday. It's so weird...Jen's sister Marie and I remarked that it felt like it had been weeks since Jen died, and yet it was still extremely raw and present. The entire week has felt the same way, and I know that before I realize it, the holidays will be on top of me, bringing a new wave of emotions. I want to thank everyone for the prayers and thoughts, and to everyone who came to see Jen.

I would ask that flowers be sent to the memorial services rather than our home. If you wish to make a donation in Jen's name, we ask that it be made to the Leukemia & Lymphoma Society, so that hopefully in our lifetime, this disease isn't such a death sentence. If you wish to make a donation to help cover any costs associated with Jen's services, please e-mail me at jeremyj.baker at gmail.com I will try to keep everyone updated on what is happening. Thank you again...

Jeremy

Michigan Memorial Service

2006-08-18T18:50:00.001-04:00

Hey everyone....here is the information for the memorial service to be held in Michigan:

Kalamazoo Missionary Church in Kalamazoo, MI
Saturday, August 26th @ 11 AM

The memorial service held today at Marymount University was very nice. It was easy to see the impact Jen had on people at this school in the short amount of time she was here.

Jeremy

Memorial Services for Jen

2006-08-16T13:57:00.000-04:00

The following memorial services will be held in Jen's honor:

Marymount University
Friday, August 18 @ 11 AM

Sacred Heart Church in Jacksonville, FL
Saturday, September 9 @ 1 PM

Details will be forthcoming on the memorial service being planned in Michigan as details are finalized.

Please e-mail me if you need directions or have any questions. Thanks.

Jeremy

Post from Jill

2006-08-10T18:31:00.000-04:00

While I was in the hospital library - Heather called telling me we were allowed to see Jen - but it might not be a pretty sight. I then decided to take my time to finish up my updating and emails - as I wasn't sure I could handle going into Jen's room.I got a cup of coffee and came to the 5th floor. I didn't see Heather or Wendy - and thought that I came to Baltimore for one reason - to see Jen. I decided that I wanted to spend as much time with her as possible.
I walked into room 5C-11 and Wendy was sitting by Jen's side and Jeremy, sister, mom, aunt, heather, and mother-in-law was sitting in the room as well.After about 10 minutes Wendy asked if she could say a prayer before she had to take her flight. Of course that was okay - and Wendy said a beautiful prayer. Everyone in the room cryed as Wendy spoke. I can't remember most of what she said - but she mentioned how beautiful and amazing of a person Jen is.
Jeremy, Heather and I walked Wendy to her car, made sure she was okay to drive to the airport and hugged her goodbye.
We walked back up to the room and sat with Jen again. Today the nurses were not visiting as often - even though Jen needed them to. Jen's mother-in-law ended up explaining to the nursing staff that Jen is still a patient even if she is on her way to a better place....after that - the nurses didn't really leave Jen's side.
Not too long after Heather went out of the room to call Kelly, during this time the family stood besides Jen. I continued to sit in the background. Jen's breathing slowed down quite a bit...I then texted Chef and stated "she is dying". Then her eyes opened half way and the family began crying. The nurse informed us this was normal. I could feel her spirit leaving us - I began to sob. I quickly left the room to find Heather - as she was the only one who was not with Jen at that moment.
When I left the room I saw everyone at the Nurse's station staring at a screen - I assumed it showed that Jen was dying at that moment. I quickly went the other direction. A social worker chased me and asked if I was alright - I walked faster and nodded my head. I told the social worker I was just looking for my friend.The social worker left me be and I walked to search for Heather....she was in the waiting room talking on the phone...she saw me sobbing....told the phone she had to go and held me and asked me what happened.
I exclaimed that I thought Jen was dying and maybe we shouldn't go back there...the family was there and I didn't want to get in the way. Heather suggested we walk to the nurse's station. We got there quick - I don't remember the walk.The nurse had red eyes - and I knew, but I had to make sure. I asked outloud to the nurse "did she pass" - all she did was nod as she put on her purple latex gloves.
Heather sobbed louder than before....I sobbed and hugged Heather. Jeremy's mom came out of the room and hugged us. She told us "Jen is in a better place now," she told us Jen wasn't in anymore pain and continued to hold us. Then Jen's mom came out and told us to come see Jen because she is not in pain anymore. We walked in Jen's room and I went to her bedside and rubbed her bald head. It was so soft...tiny little fuzzes were on it. I made a wish - thinking she would want me to. Heather rubbed Heather's arm and one of the mother's hands rubbed my back. I then looked around the room and wondered if Jen's spirit was floating around watching us telling us it was alright...just like in the show "GhostWhisperer" hoping it is truly like that.
I then grabbed my bag and told Heather I had to write. I came out to the waiting room - and decided to send a few text messages - as I was still sobbing. All I wrote was "she is gone" and sent to everyone who I thought would want to know. I then sent Chef an extra message telling him how I wish he was with me. He sent one back stating he wanted to hold me. I got many messages from people stating they were sorry. Some people called me back - but talking is not possible for me at the moment.
Heather came out to the waiting room and began making the calls. I just typed and typed....Aunt Sue came out and made more calls and so did mother-in-law.
And now - we are here....and I must say...the hardest and one of the best experiences I ever went through.

For Jen

2006-08-10T07:44:00.000-04:00

Please keep the prayers coming today that Jen will be comforted on her journey home.

Jen Update - August 9th

2006-08-09T17:21:00.000-04:00

The latest on Jen....she has remained stable throughout today so far. She has even been a little responsive this afternoon, although the moments have been fleeting. The doctors came in and told us what to expect tomorrow morning. They will not wean her off the sedative before removing the breathing tube. Today, they stopped the IV drips that weren't absolutely necessary, and are trying to bring off some of the excess fluid that has built up in Jen's body. The hope is to dry up her lungs as much as possible before removing the tube. The doctors do not hold out a lot of hope that once the tube is removed, that Jen will do very well. If her breathing stabilizes, they may try to lessen the sedative, but we can only hope that that best-case scenario comes to fruition. Otherwise, Jen will remain on an oxygen facemask, and be given an opium-based sedative that will serve to relax her breathing and heart rate, and keep her sufficiently sedated so as to not be in pain. One of the nurses told us it could be a few hours, maybe more, maybe less. Our expectation is that Jen will be in a better place sometime by tomorrow afternoon/evening. Jen has stated that she wished to be cremated, so we will do as she asked. As of now, the plan is to hold memorial services both in Jen's home state of Michigan, and her adopted home of Florida. It is our understanding that Marymount University, Jen's employer for the past year, will hold some type of service as well for people local to the DC area. Please keep Jen in your prayers, that as she leaves us, she do so with an overwhelming sense of peace, and for the strength to mourn her loss while celebrating her wonderful life. Thank you to all who have visited, and for all the thoughts and well wishes.

Jeremy, Jan, and Marie

Doctors' Game Plan

2006-08-08T09:27:00.000-04:00

Hey everyone....the team of doctors just left. The goal is to keep Jen as stable and comfortable as possible. They want to give us enough time to allow people to say goodbye. The goal is still to remove the breathing tube. This will probably happen late Wednesday or early Thursday. They will monitor her to see how she does. If things begin to go downhill as we expect, they will sedate her enough to not really feel any pain. If you wish to come visit, please do so by tomorrow. Thank you for all your prayers and thoughts...they are needed during this difficult time. I leave you with something in the conference room on the floor....it is written from a cancer patient's perspective, but it is easily enough seen from the point of view of all those they love who are left behind...

What Cancer Cannot Do:
Cancer is so limited...
It cannot cripple Love
It cannot shatter Hope
It cannot corrode Faith
It cannot destroy Peace
It cannot kill Friendship
It cannot suppress Memories
It cannot silence Courage
It cannot invade the Soul
It cannot steal eternal Life
It cannot conquer the Spirit
-Author Unknown

Jen's Status - August 8th

2006-08-08T06:35:00.000-04:00

Jen had a not so good night. They tried to reduce the amount of oxygen she was getting through the ventilator, but could not. Her stomach and GI tract don't appear to be absorbing any medicine given orally. The hospital staff have been unable to break her fever, and she is literally packed all around with bags of ice to make her comfortable. Her heart rate and blood pressure continue to climb due to the infection, making me fear that her heart won't be able to withstand much more. And her white blood count has doubled over the last day, meaning today will be the last day she has a "normal" number of cells, even though we know they're pretty much all bad. I understand people are making travel arrangements, but to be honest, I'm not sure how much more her body can take. I will try to post another update after the doctors make their rounds.

Jeremy

Jen Update - August 7th (Part 2)

2006-08-07T19:41:00.000-04:00

For all of those who wish to come see Jen, please try to do so no later than the end of this week. The doctors are unable to really let us know what kind of time me may have left. The hope is that she improves enough to remove her breathing tube, but nothing is guaranteed as the leukemia could explode at any moment. For now she is still in stable condition. That's everything we have for now....will post again with more news as it becomes available.

Jen Update - August 7th

2006-08-07T18:06:00.000-04:00

Hey everyone....needed to pass on some news. As I said, Jen was admitted again last Monday. She actually didn't have a good week. The bladder infection that led to the bleeding left her in immense pain, and the fungal pneumonia we had been battling for some time had reared its ugly head again. By the end of the week, the bladder situation had stabilized, but she began to experience difficulty breathing. She went on oxygen masks, but her lungs began to work overtime, leaving her exhausted. The only good news to come out of the week was that it appeared Jen had a Grade 1 case of the GVHD that we needed. Grade 1 is not treated, as it affects the skin only. My visit on Sunday was a see-saw....she would get bad, get better, back and forth. I left that night, as she seemed comfortable and resting easy. However, at 4:00 AM, the doctor called to tell me that Jen was having more trouble, and had tried to use the BiPAP machine she had been on previously, to no avail. The last option was to intubate her with a breathing tube. The thought was that by helping her breathe, the body could focus on taking care of the infection in her lungs. I jumped in the car and headed back up to Baltimore. She had the tube inserted with no problems. She had to be heavily sedated though, leaving her unable to speak or communicate with anyone. Jen's mom came into town around 2PM....the news had been positive, and Jen seemed to be breathing comfortably. Around 5 PM, the doctors pulled Jan and I out, and gave us the devastating news. Jen's white blood count was beginning to elevate, and 90% of the cells were abnormal leukemia cells. The doctors said we had two options. Leave her sedated and comfortable, or try to treat, most likely leaving her miserable and in pain. Needless to say, both of our options have the same end result...Jen will not be coming home again. We want to keep her comfortable and give all those that love her the chance to come say their goodbyes. We are not real sure what type of time frame we have...needless to say, the sooner you make plans the better. Please keep Jen in your thoughts and prayers, and be sure to tell your loved ones how much you care about them. You never know when God will take them back. Love everyone....

Jeremy

Jen Update - August 1

2006-08-01T21:09:00.000-04:00

Hey everyone....more Jen news....she was released from the hospital last Tuesday, and went down to the house in Woodbridge. She had appointments on Thursday and Saturday. Saturday, her platelet numbers were low, so they dumped two bags in her. I continued to move our belongings down while she was at the hospital on Saturday (and our cats!), and then met up with her and spent the night at the house. She continued to feel crappy on Sunday, although it didn't seem too out of the ordinary, as she has been plagued by fatigue. She started to experience pain and blood in her urine that night, with the symptoms continuing into Monday. The docs at Hopkins decided she should come in so they could check her out. Her platelet numbers had plummeted once again after only two days, and she was running a fever, so they decided to admit her again. They think she has a UTI, explaining the fever and blood, although they don't really know why there is so much bleeding. The sliver of good news is that the last DLI procedure only had 7 days before her white blood cells exploded again, requiring more chemo. This DLI procedure is going on 11 days, and the white counts are staying down. Let's hope this is a positive sign. Hopefully this will be a short stay......also, if anyone is able to possibly come spend some time with Jen, I would greatly appreciate it. Having to work so we have insurance means I don't get to be there for her as much as I would like. Hope everyone who reads this site is doing well. Keep the prayers coming!

Jeremy

July 18th

2006-08-01T20:58:00.000-04:00

Hey everyone....hope you are surviving the heat sweeping the country right now.....we're dying up here in DC (the concrete jungle).....just a quick update on Jen. She underwent a bone marrow biopsy this past Friday, the results of which said that her marrow is "clean" of leukemia for the moment. Dr. Levis goes before the transplant committee today to argue for another DLI procedure, hopefully for this Friday. Jen is feeling pretty good right now...I think she is looking forward to getting out of Hopkins soon (keep your fingers crossed!) As most of you know, Jen's friends Jill and Heather have set up a website to help keep people updated....the URL is www.jenniferkbaker.com We are slowly getting moved into my aunt and uncle's house due to Marymount giving Jen a July 31st deadline to return to work or be let go of....obviously that isn't real realistic, so we are preparing to move on. Our current apartment is a wreck, making Jen's possible return home a little more complicated. If anyone feels up to a road trip, I would love any help I could get in moving. I plan on moving every weekend this month, and possibly renting a moving truck for the weekend of August 5th. The house we're moving into has plenty of room, so please feel free to come visit Jen once she is home. Jen is posting her own updates on the website, so check it out. Thanks to everyone who has posted with the guestbook feature. I know Jen loves hearing from everyone.....will be back with another update soon....

Jeremy

Thanks are in order! July 22, 2006

2006-07-22T19:09:00.000-04:00

Thank you again to Marie for enduring another catheter and another DLI - Come on baby light my GVHD fire!!!! And Travis for being so supportive!

Thank you to Beth and Dan, Margaret, Farren, and Todd for helping my husband this weekend! And for being their for my husband at work and in life!

Thank you to Jill and her Blogathon supporters! She has raised $540 for the Marrow Foundation so far and the following are her contributors:
6 different Anonymous Sponsors
B. Haywood - DogPolitics.com & kittyporn.org
Maire Stafford
Margot Pouw
Robin Trezza
Terry Bain - http://bainbooks.com, http://youareadog.com, http://wearethecat.com, http://dailypoem.bainbooks.com
Pat Flinsch-Rodriguez
ClaudiaRaeDesigns.com
bocalynne
Pam Warner
LotionBarBunny - A Girl's Gotta Spa
Shelli Cook - www.nappycakesbyshelli.com, www.onceuponafamily.com/shellicook
Bark 'N' Blog

Thank you to Amal and fam for forming a team to walk in the Light the Night Rally for the Leukemia and Lymphoma Society on October 1st, to honor her dad and Jen. And they are wearing ORANGE t-shirts - orange is the color that represents Leukemia.

Thank you Mike Leahey... I may be calling you on Monday for some advice!!! Watch out!

Wigs

2006-07-20T20:33:00.000-04:00

So Marie, Travis and I had a hair fashion show... Marie made me try on some longer versions like Victoria and Tiara. We realized I cannot go blonde as it washes me out. So I am going with the color Marble Brown and my 2 top picks are Laurie and Katie. Both are coming in next week in the Marble Brown color so I can try them on. So we will see how that goes... Let me know what you think on the pics!

Interesting Article

2006-07-20T20:04:00.000-04:00

I can definitely relate with this...

Click the following to access the sent link:

CNN.com - Doctors say teens, young adults need specialized cancer care - Jul 19, 2006* CNN.com will expire this article on 08/18/2006.

Wednesday, July 19th

2006-07-19T21:49:00.000-04:00

Marie and Travis are here! Marie is here for another Donor Lymphocyte Infusion that is happening on Friday. For Marie, she has to have a catheter put in and is hooked up to a machine that takes her blood, spins out the lymphocytes and then returns her blood to back to her. For me, its just like getting another blood or platelets transfusion - so its nothing special. But it should induce Graft versus Host Disease within the 60 days of the transfusion.

Most of this week has been spent contacting pro bono lawyers, the Equal employment Opportunities Commission, and my local Human Rights Office. My work is terminating me as of July 31st due to my illness making me unable to work. I do believe under ADA they are not allowed to fire me due to my illness. Everyone I have spoken with feels I have a case so I am in the process of formally filing a complaint. I want to keep my job, I love my job! If it comes down to it and they do want me there, I want a severance package as I had no plans to be out of work at this time. Its bad enough having an illness but now I have to fit for my job and housing. Now more than ever do I want my law degree so this doesn't happen to others!

Thursday, Marie, Travis and I are going to help me pick out a wig. It isn't covered under my insurance, but I can get reimbursed under Jeremy's FSA. I actually do not mind being bald, it is one of the only things that reminds me that I do have AML. But I miss twirling my hair too ;) and my head gets cold often. We are going to take pictures of the outing. Marie thinks I should get long hair and I want a hair style as similar to my natural hair as possible. I think I might post the pictures and get everyone's opinion! So watch out for those pics!
Good night, Jen :)

Sunday, July 16th

2006-07-16T20:04:00.000-04:00

It's Jen again... So my doctor has released me to go home whenever I want. It looks like I will be checking out of here on Friday with any luck. Marie is tentatively scheduled to give me more donor lymphocytes again on Friday. Hopefully, that will finally induce GVHD so my AML can go into remission. I have made friends here at Hopkins. Jill is also 28 and has the same kind of AML I do and she was diagnosed one day before on Dec 22nd. Kinda weird... Her AML seems to be even more resistant than mine. She is looking into a Cord Blood Clinical Trial out at the University of Minnesota. If my procedures do not work, we may be going out there together.

When I was diagnosed, my doctors kept telling me how strange it was that I had AML as it was known to be a childhood or an elderly disease. I can tell you that I have seen many patients in their 20's dealing with AML. I just wonder how and why... Benzene is said to be the culprit, but we all come into contact with benzene everyday in cigarette smoke, gas humes and cleaning solvents. I know I have always said that if we live long enough we will all end up with some form of cancer, I just haven't lived long enough yet.

Some good news... I have FINALLY stopped losing weight. So you all can try and stop feeding me! Chemo sucks because it changes how food tastes and can leave me with no desire to eat. For instance, I LOVE chocolate - however, chemo has hightened my sense of sweet so I have had barely any chocolate or anything sweet in the last 6 months. Trust me, it sucks when you can't even enjoy your own bday cake. Plus my appetite in general has shrunk. But I am holding steady at 150 lbs. I have lost 70lbs so far and thank god I had it to lose. I feel like a skelton to begin with, but my friend Jill is down to only 88lbs so I have nothing to complain about. The hardest thing about the weight lose has been muscle atrophy. I have always had meat on my bones and much of it being muscle. I haven't been this thin since probably my freshman year of high school, but its still not the same as I was in great shape then and now I am just skinny (which I would NEVER describe myself as). But my husband did bring me up my Pilates tapes and mat. I was able to actually do it once last week. Its a little more difficult with a line running into my chest and an IV machine attached to me, but I made it work.

Time to get ready for another Grey's Anatomy re-run. Oh, single friends... there are tons of single Dr. McDreamy's here for men and women... so come visit me ;)

July 14th - Info on my special kind of AML

2006-07-14T14:29:00.000-04:00

I have AML FLT3. Below is some info regarding FLT3 and a clinical trial that is ongoing with a new drug CEP-701. I was on CEP-701 for about 10 days, but then I became ill and had to stop the protocol. CEP-701 is something that I can use again in the future if I am unable to have the Graft versus Host Disease.

http://www.hopkinskimmelcancercenter.org/news/archive_details.cfm?documentid=256

What are the basic facts about acute myeloid leukemia?

Acute myeloid leukemia is the most common form of adult leukemia and the second most common childhood leukemia accounting for more than 10,000 cases annually in the U.S. In this type of cancer, the myeloid cells of the blood and bone marrow grow uncontrollably, crowding out and destroying normal blood cells. Standard therapies include chemotherapy and bone marrow transplantation, which replaces the diseased bone marrow with healthy marrow. Overall, AML can be cured in up to 50 percent of patients without FLT3 mutations, but FLT3 mutant AML patients have a much lower cure rate.

What are FLT3 mutations?

FLT3 gene mutations are an alteration in the DNA of certain leukemia cells. They occur in up to 40 percent of acute myeloid leukemia cases. These mutations cause the cancer to grow more aggressively and to be less amenable to cure. Researchers at the Hopkins Kimmel Cancer Center have developed a type of drug, called a tyrosine kinase inhibitor, that blocks the activity of the mutated protein. This inhibitor drug, called CEP-701, was tested on AML cells in the laboratory and in mice and found to be effective in killing FLT3-mutant AML.

What is a tyrosine kinase inhibitor?

Tyrosine kinase inhibitors are a new class of drug that have the ability to block gene signaling proteins. Mutated FLT3 genes use their tyrosine kinase portion to signal leukemia cells to grow and also to prevent them from dying. These drugs block the mutated gene’s signal and, therefore, its ability to communicate with cells. Think of someone speaking to you and requesting you to perform a function. If you were able to hear the command, you would respond. But, if you had cotton placed in your ears, it would block your ability to hear the command, and you would not respond. CEP-701 works in a similar manner with FLT3 gene signaling. The drug stops the leukemia cell from “hearing” the mutated FLT3 gene’s command to grow and spread.

July 14th

2006-07-14T13:42:00.000-04:00

Hi everyone! This is my first update to the site... I thought you would all like to hear from me every once in awhile :) Today is Day 14 of my chemo treatment at Hopkins which meant I had another Bone Marrow Biopsy done by my Nurse practitioner, Denise. She is the best...it was totally pain free! I also got news that since I haven't had the negative side affects that usually go along with this treatment that I can choose when to discharge outta here. But I will probably have a procedure next where my sister, Marie, donates her lymphocytes (DLI) to me to kill off my Leukemia stem cells and force Graft versus Host Disease (GVHD). My hope is that GVHD happens this time so I can finally go into remission.

I know that the last update had some scary and sombering news, but I am happy to report I made it through the storm and we are back on course for treatment. It was something I definitely never thought I would be going through at this time in my life, but like any other life changing event it has helped to refocus me and what I want in life. Thank you to my mom, Marie, Jeremy, Amal and Susan for being there for me during that time. Apparently I was a hoot at times...I spoke fluent spanish while dreaming out loud one afternoon. I guess I was telling a Mexican family all about my cats. And I would break out in song and dance in my bed. I think it was my bodies way of letting my family know I was still in there fighting regardless of what the doctors said.

Things are very uncertain right now with my job and living situation. I have been informed that if I do not return to work by July 31st I will be terminated. So Jeremy and I have a lot on our plate. Even if I can return to work before the date, I do not feel I can return to my apartment in its current state of moldy carpet which would make me sick and put me back in the hospital. Also, I know I would need some additional time off since after the DLI we will be waiting for GVHD to take affect which could take up to 3 months to manifest. Again, a lot of decisions to make...

I have truly enjoyed reading the postings on the guestbook. I miss and love you all! Thank you for your support and prayers. And don't worry I plan to kick cancer in the ass no matter how long it takes me :)

Love, Jen :)

6/28/06

2006-07-03T21:42:00.001-04:00

Hi everyone.....some of you are aware of this weekend's events, and some aren't. We had a pretty scary weekend. As my last e-mail stated, Jen had been re-admitted on Thursday due to her white blood cell count. That evening they hit her with another dose of chemo to bring those numbers down. Friday when I spoke to her on the phone, she said she was in a lot of pain, and couldn't talk for long. Plans were for my mom and I to go to Baltimore on Saturday anyway. As we drove up, I called Jen, who stated that she wanted to wait until I arrived to discuss what the doctors were saying. I walked into her room to find her with an oxygen mask on. The doctors arrived a short time later. Jen had had trouble breathing that morning, and as a result, had panicked, making the problem worse. She was placed on a 100% oxygen blend. In addition, the break down of her cells were releasing toxins into her blood, and her kidneys were beginning to shut down. Because she was unable to rid her body of fluid, she developed immense pressure on her lungs as the fluid escaped her blood vessels and was absorbed into her tissues. The doctors' message left me shaking....they were not real optimistic they could fix all these problems. In the confusion of Jen's episode that morning, she had told the doctors she didn't want a breathing tube inserted. The doctors took this to mean that Jen wanted no "heroic measures" taken if she were to stop breathing. This is NOT what Jen meant....she knew that I had not felt very good after I had a breathing tube for my emergency appendectomy. There were also issues with her dad's passing. I immediately got on the phone to Jen's mom and sister, telling them they needed to get to Baltimore ASAP. The rest of that afternoon was spent trying to explain that Jen did want measures taken in the event she stopped breathing, and discussing what would be done to address the problems she was facing. They gave her a huge dose of Lasix to try and "kick start" her kidneys (we had agreed to dialysis if necessary), and kept her on oxygen and pain meds. So we sat and waited....the Lasix started working, as Jen was able to produce some urine....Jen's family arrived at 1 AM, and mom and I headed home to Arlington to pick up a few more items for the next day.

Sunday morning, I received a phone call from an oncology doctor, confirming that it was Jen and mine's intention to place a breathing tube if necessary. The next phone call was from Jen's mom, saying that the doctors were suggesting Jen probably only had a matter of days. I rushed up to Baltimore as fast as I could (in case you haven't been watching the news, we have been getting hammered by rain...9 inches in 48 hours....made driving a nightmare). Jen's heart and lungs couldn't keep up with her rapid breathing. I shed quite a few tears as I called my family to tell them the news. It was a rather surreal setting as I had to discuss what to do if (seemed more like when in those hours) Jen died. Overnight she had been placed on an assisted breathing machine (BiPAP). She wasn't awake much that morning as we all hoped and prayed. By that evening, her kidneys had continued to produce urine, and she started to flush the extra fluid out of her system. In turn, her heart rate began to SLOWLY come down. I didn't sleep much that night in the chair next to her bed. Monday morning the breathing rate trend continued (she had averaged 136-39 beats per minute initially, by this time she was down in the low 120s). The doctors started singing a different tune, saying they were encouraged by the progress overnight. She was able to talk by that afternoon when she was off the BiPAP machine, and even ate a half a piece of pizza that night! Tuesday brought more improvement...her kidneys were returning to normal, and her lungs didn't seem nearly as painful. Her heart rate slowed by the end of the night to the low 100s. She said I should go home (I had had about 8 hours of sleep in 72 hours). The reports from this morning are good. While we seem to have dodged a bullet so far, the leukemia is still a problem. The doctors have admitted to us that they are beginning to run out of options....GVHD is pretty much our only hope for remission. We are handling this one day at a time, and we have definitely not given up hope that we will beat this thing once and for all. Please continue to pray for Jen....we need as much hope as we can get right now. I will try to send updates, but I'm sure you can understand that I am busy taking care of Jen. Hope all of you are doing well......we appreciate your thoughts and prayers.

Love,

Jeremy

6/23/06

2006-07-03T21:42:00.000-04:00

Hey everyone....bet you didn't think you'd hear back so soon! We have another setback in Jen's recovery. She was re-admitted to Hopkins yesterday because her white blood cell count was spirally continually higher. The docs want to hit her with some IV chemo, see the effect, and possibly repeat. They are also talking about having to do the DLI procedure over again. Needless to say, Jen is not real thrilled right now. She wants to be home and back to work. For me, it's becoming increasingly difficult to know just how good of a handle the doctors and nurses have on this damn disease. Seems like for everyone one step forward, we turn around and get sent back five. Everytime some light appears at the end of the tunnel, something manages to turn out the light. In case you couldn't tell, I too share Jen's frustration. Anyway, I will pass word when there is more news!

Jeremy

6/19/06

2006-07-03T21:41:00.001-04:00

Sorry it's been awhile everyone....life has been kinda crazy here lately. First, the good news: Jen is home again!!! I brought her home yesterday. Now the not so good news: the leukemia isn't completely gone. Let me backtrack for a moment to catch everyone up. Memorial Day weekend Jen was able to come home for a day (mainly so she could see our cats). She wasn't feeling real hot the next day, so we headed back to Baltimore for the remainder of the weekend. I'll admit that having her home for the one day left me wanting more....the apartment just doesn't feel the same without her there. Turns out that Jen's little sojourn home left her with an acute infection, so it was back to taking tons of antibiotics to clear it up. Everything appeared to be on track until the docs noticed that there were still some leukemia blasts in Jen's blood work. Dr. Levis moved up her follow-up bone marrow biopsy, which confirmed that the leukemia was in fact not completely gone. Jen's numbers started to skyrocket again, so she went back on oral chemo, and was placed on another clinical trial (CEP-701 is the drug if anyone is interested) to help keep her numbers down. Jen's sister Marie came back into town this past week so that her lymphocytes (otherwise referred to as T-cells) could be harvested and given to Jen. This procedure is suppose to guarantee a case of Graft-vs-Host Disease, and presumably kill off the remainder of Jen's own stem cells. If this goes off, Jen should be "cured"; however, GVHD is no walk in the park....if must be closely monitored and controlled, lest the war going on inside her body claim her in the fight. For now she will be returning to Hopkins three days a week (she currently has my mom here to help), and once GVHD happens, she will most likely be back in the hospital for two weeks while the doctors bring it under control. For now I am simply thankful that I have Jen home to celebrate our three-year anniversary on Wednesday. Unfortunately, this disease has cost us too many holidays already....hope everyone is doing well. Take care, and enjoy the summer!

Jeremy

5/10/06

2006-07-03T21:41:00.000-04:00

Hey everyone.....Jen has been released from the hospital. Good news, although it is only the first step. She can still see the hospital from the lodge she will be staying in for the next month or so. She still has to go to the In-Patient/Out-Patient Center at Hopkins pretty much daily for blood workups and to receive any IVs that she may need, such as blood, platelets, etc. Her mom is with her now, and she is sounding much better this week, hopefully meaning that her throat is starting to heal itself. Still welcoming anyone who wants to come visit. I will pass along more as we get closer to getting her home.

Love,

Jeremy

5/4/06

2006-07-03T21:40:00.002-04:00

Hi everyone....hope this e-mail finds you all doing well. There is a whole lot to report. The good news is that Jen's "numbers" are coming back up dramatically over the last couple of days. Hopefully this indicates that the bone marrow is starting to take hold. Her target date for discharge (not to come home, but to go to the inpatient/outpatient center there every day) was May 5th. Not sure whether that will happen or not, but if not then, then hopefully soon thereafter. The not so good news is that the chemo this time around has really had some bad effects on her. One common side-effect of chemo is mouth sores. Unfortunately, Jen got the sore....only problem is that it developed in her throat. She says that swallowing feels like she's swallowing a handful of razor blades. As a result of her throat condition, she has been ravaged pretty hard with vomiting and has had problems with sinus bleeding as well. Needless to say, it hasn't been a real fun time for Jen the last two weeks. No signs yet of Graft Versus Host Disease, but we were told the signs wouldn't show up until her numbers came up.....so he hope to see something soon. That's all for now....I will send word when she is released.

Sincerely,

Jeremy

4/16/06

2006-07-03T21:40:00.001-04:00

Hey everyone...to all who celebrate, a very Happy Easter. Jen's bone marrow transplant went as well as expected on Friday. Her sister Marie was done with her procedure by 9:00 AM, and the marrow was up in Jen's room by 11:00 AM. It only took all of 15 minutes to drop the bag into her IV line. All in all it was very anti-climatic for being the thing that could cure this disease. Now we get to play "hurry up and wait". We should know in two to three weeks whether the new bone marrow has taken hold. That's it for now.....I'll send more news soon.

Jeremy

4/10/06

2006-07-03T21:40:00.000-04:00

Hey everyone....hope this e-mail finds you enjoying Spring.....I wish the weather here in DC would make up its mind! Jen has returned to Johns Hopkins....she was admitted on Thursday (April 6th) and began what will hopefully be her last round of chemo. Her bone marrow transplant is scheduled for this coming Friday, April 16th. The one complicating factor in all of this is the sinusitis that Jen had been dealing with for the past two weeks. Despite receiving twice daily IV antibiotic treatments (the second one usually done from home) and feeling and looking much better, the CT scans showed the her sinuses still didn't look too great. Jen's oncologist, Dr. Levis, and the head of transplant, Dr. Jones, both agreed that that could not afford to postpone the transplant any longer. The ENT doctor didn't feel comfortable with doing the transplant with the existing condition. Dr. Levis made sure we understood the gravity of the situation by letting us know that people have died from sinusitis while undergoing BMT. Not exactly the encouraging news you want to hear before admitting your wife.

For anyone interested in visiting, her room is in the Weinberg Building, Room 5B-10. (Directions: http://www.hopkinsmedicine.org/Directions/Weinberg.html ) Her room phone number in 410-502-0316. I would also like to put out a call for help. While Jen's family and my mom have been huge helps, their availability is limited. Even after getting out of the hospital, Jen will be required to remain in Baltimore for out-patient care for at least another six weeks afterward. We are asking anyone who is willing to come "babysit" (Jen's word, not mine) Jen while she is getting back on her feet. There shouldn't be too many requirements, just keeping an eye on Jen and helping her. I will try to provide more details about when she may need the help as I find out. Again, I hope this e-mail finds everyone doing well.....I'll send more news as it becomes available....

Jeremy

3/12/06

2006-07-03T21:39:00.001-04:00

So let me start by apologizing......Jen has been home now for close to two weeks. In my mind it doesn't really feel like it since she travels to Hopkins every three days or so. We are still battling the fungal pneumonia she developed, only we get to do it from home. We have IV bags and and IV tree....it is starting to look like a small-scale MASH unit in our living room! Because of her setback, the date of her bone marrow transplant has been pushed back. She is scheduled to be admitted on March 29, undergo a nasty week of chemo, and then receive the bone marrow on April 5th. Jen's sister Marie flies in this week to have a complete evaluation done (basically a glorified physical) and then will come back on the 5th to have the bone marrow procedure done. After that we are looking at probably three weeks more of hospital stay, and an unknown number of weeks of daily check-ups. Again, I want to thank everyone for everything you've done, even the simple act of writing back an e-mail!! Big thanks to my cousins Rob and Alyson for a laptop for Jen to play DVDs on in the hospital! We love everyone, and hope these e-mails find great things happening in your lives. I'll post for you all again soon....

Jeremy

2/23/06

2006-07-03T21:39:00.000-04:00

Hey everyone....here is a quick update on Jen. Her follow-up treatment at Hopkins went well according to the doctors. The FLAM treatment (an experimental drug with higher doses of chemotherapy) sent her leukemia cell numbers crashing back down. Her doctor said that if he didn't know better, he would have thought she was in remission. Unfortunately, we know this not to be true since her type of leukemia (with FLT-3 gene mutation) does not go into remission. Jen's sister was being re-typed to confirm her as a bone marrow match, and she flies into Baltimore this Sunday for her evaluation prior to the transplant. Jen was discharged on Friday, February 17th. We had an appt with Hopkins' outpatient clinic that Saturday, and sent the rest of the weekend at home. Jen was exhausted, and spent most of her time sleeping. She also became ill to the point that she couldn't keep anything food down, and she developed head congestion and a nasty sounding cough. We headed back to the hospital on Tuesday for a regular follow-up, and there they performed a chest scan, which confirmed that she had fungal pneumonia, and possibly RSV (respiratory virus). Obviously this is not good news with her immune system in such a weakened state. She was re-admitted, and is currently being treated to clear up these problems. Hopefully she can kick these things and get back home before the transplant. Right now, it looks like we will be headed in for the transplant sometime around March 15th. Still not real clear on what to expect after that. I want to thank everyone for the e-mails, gifts, and all your support in general. I will try and pass along news as it becomes available. Also, here is a resource for anyone who is interested...

http://www.marrow.org/PATIENT/aml.html

Love,

Jeremy

1/30/06

2006-07-03T21:37:00.002-04:00

Hey everyone, sorry it's been awhile since I sent word. Jen was discharged from Inova Fairfax on Friday, January 20th. Her counts were recovering, and she was feeling good (that is to say that if they didn't let her go, she was going to stage on escape!) We spent a nice weekend home, and she was back at work on Monday after visiting the doctors office to have her blood drawn. However, the good news didn't last long....her oncology doctor called to say that her blood draw had shown that her leukemia had not gone into remission as hoped, and he was recommending her to a doctor at Johns Hopkins Hospital for what he called a "more novel approach" towards treating the cancer. We headed up to Baltimore on Tuesday, and her new doctor confirmed that she had leukemic blasts in her blood, and admitted her. She has been enrolled in a clinical trial program testing a new, not yet approved drug in the hopes of knocking the cancer into remission. He also let us know that Jen would most likely need a bone marrow transplant regardless. Jen's sister had got tested and typed when she visited at the end of December. A little silver lining to this dark cloud, so far it looks like she is a match, which is the best news we could have. Keep your fingers crossed that the final verdict is that she's a match....the complications of a transplant are less with a family member as a match as opposed to a stranger. So in short, we are back to battling, only this time I can't be with her nearly as much (Baltimore is over an hour away, and the hospital will only allow me to stay overnight one night a weekend). Please keep us in your prayers; we need them now more than ever. If you want to give her a call, her hospital # is 410-502-0338. Thank you again for all the support and well wishes....I hope you all know how much they mean.

Love,

Jeremy

1/17/06

2006-07-03T21:37:00.001-04:00

Just wanted to pass along an update. Jen appears to have emerged from the woods with the typhlitis.....the doctors came in and told her that she should be headed home this weekend (probably Friday). We will still have a lot of doctors visits and rough days ahead, but it will be nice to get her home.....thanks for all the prayers and well wishes. They were greatly appreciated in this difficult time.

Love,

Jeremy

12/27/05

2006-07-03T21:37:00.000-04:00

Quick Update...

Jen began intensive chemotherapy on Christmas Eve, and completed one of her two chemo drugs today. So far she is handling it like a champ, outside of the fatigue. She remains in good spirits, and is being handled by a great nursing staff at the hospital. Thank you for all the thoughts and prayers....we will continue to need them in the coming weeks.

Love,

Jeremy

12/24/05

2006-07-03T21:35:00.000-04:00

Hey everyone.....first off, happy holidays, and I hope everyone has had a good year. Unfortunately for Jen and I, the year is not ending well. Yesterday we went to the emergency room because Jen was having horrible pain in her chest and upper back. After a few blood tests, the doctors came back with some devastating news: Jen's white blood cell count was over 50x the level it should have been, and she was diagnosed with acute leukemia. They immediately transferred her to Inova Fairfax hospital to begin treatment to bring down her white blood cell count. She underwent an aferesis treatment, where they spin out parts of your blood. As soon as the doctors have determined exactly what type of leukemia it is, Jen will begin intensive chemotherapy treatments. Please keep Jen in your thoughts and prayers, as we will need all the strength we can muster during this difficult time. If you feel like showing your love, feel free to brighten her day with flowers (she is room 964). More pressing issues are blood transfusions and bone marrow. Please donate blood and get your bone marrow typed. You never know whose life you might save. May the New Year bring good news......

Sincerely,

Jeremy