6/28/06

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

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

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

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

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

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

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

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

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

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

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

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

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