Good morning family and friends,
Jenn is rather weak from the chemo she received leading up to last weeks transplant. She is taking a day off today from PT, OT and all the likes. She had a crazy day yesterday as her heart rate was high and her blood pressure was really low. So the cardiologist came in and saw Jenn, he said he really wasn't overly concerned and that she just needs a "tune-up", but that always worries me. Jenn has been maintaining her good spirits, but she still has times were she gets really worried and cries some as well. Which is good for her, she needs to get those sad feelings out in order to stay strong and fight through this bone marrow transplant.
I will try to update the blog a little more frequently as I am not traveling this upcoming week, so keep an eye out for more frequent updates.
I want to thank a bunch of people today that have either sent cards, gifts, etc. Thanks to the folks at Synnex for sending a really nice card that was signed by all of our friends at Synnex and had some really motivation words of well wishes and healing. Jenn really loved reading all of the comments, they brought many smiles to Jenn's face. Speaking of smiles, we received the absolute nicest card this past week from Jenn's Aunt and Uncle; Jane and Scott. I want to thank them many, many, many times over for the amazing card and especially for what was contained inside. That made Jenn feel so relieved as she always worries about finances and that certainly made a lot of those fears go away. You guys are amazing and we couldn't share our anniversary with any finer a couple!! Thanks to Kim (Jenn's Mom) for sending some really cool Halloween decorations, seasons of Breaking Bad and funny materials that had Jenn and I laughing (The hat is hysterical!!). That made Jenn spruce up this morning and I in turn spruced up her room with all of the decorations; Thanks Mom! Thanks to all of the people at Wells Fargo that work with Scott (Jenn's Dad), they sent some really nice gifts that Jenn will be using as soon as we get out of here. Also the stress ball and pens were great, she has been pumping that stress ball for the past 30-45 minutes and that is helping with her strength as well. Thanks Monica and everyone at Wells Fargo! Lastly thank you to my grandmother for the anniversary card, it was beautiful and made Jenn smile at the kind words and loving birds on the cover, she really enjoyed reading it and taking it in!
Please say some prayers for this spirited warrior, she has been through hell and back so many times that I already lost count at a couple hundred... She is strong and a fighter, but prayers are always needed and we thank you all for keeping Jenn in your thoughts and daily prayers!
Much love from room 5617!!
Saturday, October 12, 2013
Saturday, October 5, 2013
Saturday October 5th, 2013
Happy Birthday to Jenn, Happy Birthday to Jenn!!
Jenn received her T-cells to from her lovely donor (Whomever you are...we will find out who you are a year from today and we appreciate all that you did for my wife!!) and all is well. The transplant takes less than 20 minutes, but that little bag of cells are the most important transfusion Jenn will ever receive in her life!!
This past week has been rough on Jenn emotionally, so her coordinator here at Roswell setup a visitation from Larry, a former bone marrow transplant patient here at Roswell. Larry was quite inspirational as he too has been through two bone marrow transplants and had just about every complication you can think of. He wasn't supposed to make it out of transplant, but told us that he just focused on what mattered most to him; his wife and family. He told Jenn that she needs to stay here for me and for her family and I couldn't agree more. She has so much to live for and that was immediately clear!
Jenn is doing much better with her speech and walking as well. This past week she even walked 20 laps one day and most other days she would pound out 12-15 laps. If you consider that less then 2 weeks ago, Jenn was barely able to walk 1 lap, her progress is quite remarkable! Now with that said, Jenn is still emotionally quite low, so if anyone would like to send a card for encouragement it would be greatly appreciated. Please send cards to the following address below.
Jenn Pyjas
372 Lake Ave
Lancaster, NY 14086
I want to let everyone know that even though all is well so far, the serious battle has yet to begin. The next two to three weeks will be rougher as the chemo sets in and the donors marrow starts to graft. We just need to send prayers that the marrow grafts and that there is not to much graft versus host disease (GVHD).
Lastly, I want to thank Kim Lomas (Jenn's Mom) for visiting last week, without her here Jenn wouldn't be in the great physical and mental condition that she was when she came into the BMT transplant wing this past week. There certainly is special bond between a mother and her daughter and I got to see that first hand and it was heart warming! Also, I want to thank everyone that I work with at Epson for covering for me this past week at the Synnex National Conference and for the beautiful bouquet of flowers that Jenn received here yesterday. They are absolutely gorgeous and I cannot thank everyone enough!
Much love from room 5617!!
Jenn received her T-cells to from her lovely donor (Whomever you are...we will find out who you are a year from today and we appreciate all that you did for my wife!!) and all is well. The transplant takes less than 20 minutes, but that little bag of cells are the most important transfusion Jenn will ever receive in her life!!
This past week has been rough on Jenn emotionally, so her coordinator here at Roswell setup a visitation from Larry, a former bone marrow transplant patient here at Roswell. Larry was quite inspirational as he too has been through two bone marrow transplants and had just about every complication you can think of. He wasn't supposed to make it out of transplant, but told us that he just focused on what mattered most to him; his wife and family. He told Jenn that she needs to stay here for me and for her family and I couldn't agree more. She has so much to live for and that was immediately clear!
Jenn is doing much better with her speech and walking as well. This past week she even walked 20 laps one day and most other days she would pound out 12-15 laps. If you consider that less then 2 weeks ago, Jenn was barely able to walk 1 lap, her progress is quite remarkable! Now with that said, Jenn is still emotionally quite low, so if anyone would like to send a card for encouragement it would be greatly appreciated. Please send cards to the following address below.
Jenn Pyjas
372 Lake Ave
Lancaster, NY 14086
I want to let everyone know that even though all is well so far, the serious battle has yet to begin. The next two to three weeks will be rougher as the chemo sets in and the donors marrow starts to graft. We just need to send prayers that the marrow grafts and that there is not to much graft versus host disease (GVHD).
Lastly, I want to thank Kim Lomas (Jenn's Mom) for visiting last week, without her here Jenn wouldn't be in the great physical and mental condition that she was when she came into the BMT transplant wing this past week. There certainly is special bond between a mother and her daughter and I got to see that first hand and it was heart warming! Also, I want to thank everyone that I work with at Epson for covering for me this past week at the Synnex National Conference and for the beautiful bouquet of flowers that Jenn received here yesterday. They are absolutely gorgeous and I cannot thank everyone enough!
Much love from room 5617!!
Wednesday, September 25, 2013
Wednesday September 25th, 2013
Good morning to all of our friends and family!!
We are finally getting ready to proceed with the bone marrow transplant for Jenn. This past couple of weeks have been VERY hard on Jenn and us the family. Jenn spent 8 days in the ICU with water around her heart and water around her lungs. So breathing was very difficult and the doctors actually thought we might lose Jenn the first night she was in the ICU unit. This was by far the worst week of my entire life. Every night I would try to sleep, but I didn't want to miss any calls from the hospital. I do want to thank my parents for spending a lot of time up at the ICU with me, even staying till 2:30AM the first night when Jenn was admitted. They certainly know how to make their son feel better and loved!
Now back to the important person. Jenn is looking forward to entering the bone marrow wing here at Roswell this Friday. She will start her conditioning chemo on Saturday and then on Saturday, October 5th Jenn will get her donors stem cells. Jenn has one more test to pass before she can officially get transferred over to the BMT wing. Tomorrow she has a Pulmonary exam and pending that she passes that final test, everything I mentioned above will happen starting this Friday.
Sorry for not updating the blog for almost two weeks now, but with Jenn in the ICU, we didn't want to scare everyone and cause overreactions. But I also don't want to sugar coat this either, Jenn fought extremely hard to make sure she got out of the ICU. The neurotoxicity has been slowly wearing off and thus Jenn's speech and walking has become a lot better. This is all due to Jenn's hard work and dedication, she truly is the strongest most motivated person I have ever met in my life; bar none!
Jenn's mom Kim has been here since Sunday and has been helping Jenn along with all of her treatments. There is something so special about a mother and her daughters connection. Kim has been documenting Jenn's daily activities and that is helping the Dr's here understand exactly what Jenn can accomplish in any given day. The Dr's only see Jenn for minutes each day so that isn't always the best way to judge a patient, so to see what she is doing through-out the day helps them to make better decisions in treatment and dietary needs.
Jenn is still walking with a walker, but I can see that within a couple of weeks, she will be walking on her own again without the aid of such a device. Her speech is greatly improved and now that she talks with her mouth more open, she is much easier to understand.
Sometimes I wonder why this has happened to Jenn, it's at those times that I realize the big man has a plan for us and Jenn's inspiration and motivation are just part of it. I am looking forward to getting this bone marrow transplant underway as it is the last obstacle in Jenn's treatment process. Now don't get me wrong, Jenn will still be here in Buffalo for at least 6 months having weekly check-ups, etc. But this is the last treatment before we can resume our amazing lives together!!!
Well I could go on and on, but for now we will let Jenn rest and get ready for her big Pulmonary test tomorrow.
Much love from room 5411!!
We are finally getting ready to proceed with the bone marrow transplant for Jenn. This past couple of weeks have been VERY hard on Jenn and us the family. Jenn spent 8 days in the ICU with water around her heart and water around her lungs. So breathing was very difficult and the doctors actually thought we might lose Jenn the first night she was in the ICU unit. This was by far the worst week of my entire life. Every night I would try to sleep, but I didn't want to miss any calls from the hospital. I do want to thank my parents for spending a lot of time up at the ICU with me, even staying till 2:30AM the first night when Jenn was admitted. They certainly know how to make their son feel better and loved!
Now back to the important person. Jenn is looking forward to entering the bone marrow wing here at Roswell this Friday. She will start her conditioning chemo on Saturday and then on Saturday, October 5th Jenn will get her donors stem cells. Jenn has one more test to pass before she can officially get transferred over to the BMT wing. Tomorrow she has a Pulmonary exam and pending that she passes that final test, everything I mentioned above will happen starting this Friday.
Sorry for not updating the blog for almost two weeks now, but with Jenn in the ICU, we didn't want to scare everyone and cause overreactions. But I also don't want to sugar coat this either, Jenn fought extremely hard to make sure she got out of the ICU. The neurotoxicity has been slowly wearing off and thus Jenn's speech and walking has become a lot better. This is all due to Jenn's hard work and dedication, she truly is the strongest most motivated person I have ever met in my life; bar none!
Jenn's mom Kim has been here since Sunday and has been helping Jenn along with all of her treatments. There is something so special about a mother and her daughters connection. Kim has been documenting Jenn's daily activities and that is helping the Dr's here understand exactly what Jenn can accomplish in any given day. The Dr's only see Jenn for minutes each day so that isn't always the best way to judge a patient, so to see what she is doing through-out the day helps them to make better decisions in treatment and dietary needs.
Jenn is still walking with a walker, but I can see that within a couple of weeks, she will be walking on her own again without the aid of such a device. Her speech is greatly improved and now that she talks with her mouth more open, she is much easier to understand.
Sometimes I wonder why this has happened to Jenn, it's at those times that I realize the big man has a plan for us and Jenn's inspiration and motivation are just part of it. I am looking forward to getting this bone marrow transplant underway as it is the last obstacle in Jenn's treatment process. Now don't get me wrong, Jenn will still be here in Buffalo for at least 6 months having weekly check-ups, etc. But this is the last treatment before we can resume our amazing lives together!!!
Well I could go on and on, but for now we will let Jenn rest and get ready for her big Pulmonary test tomorrow.
Much love from room 5411!!
Wednesday, September 4, 2013
Wednesday September 4th, 2013
Good morning everyone, I wanted to update the post since Jenn is rather weak right now and unable to post any messages. She is doing well, just very tired from the high dosage chemo and she is having a few issues with her motor skills due to the strength of the chemo. About a week ago, Jenn was getting one of her last chemo treatments and it caused what they call "Neurotoxicity". This directly affects Jenn's motor skills and speech. At this time, Jenn's speech is almost 100% again. But she has to do physical therapy everyday in order to build back her motor skills for walking and balance. This has caused a delay in the bone marrow transplant and it looks like they are going to puch it back another week to allow Jenn to rebuild her strength and coordination. Jenn is quite sad by all of this, but she is slowly seeing that she is almost done with the treatments and that this is one of the last obstacles on her way back to freedom and living life in the outside world again. I am hopeful that Jenn will be much better next week. Since she is changing rooms a lot, please send any cards or well wishes to 372 Lake Ave Lancaster, NY 14086. Much love from Room 5913!!
Friday, August 23, 2013
Friday, August 23, 2013
Good day friends and family, I hope life is treating you well. I'm feeling the best I have since checking back into the hospital. I checked back in on Wednesday and started chemo right away. This time I'm on two different kinds of chemo; Cytarabine and Mitoxantrone. The funny thing is Mitoxantrone makes my urine blue and could even make my skin blue, so I'll be like Smurfette! In times like these you have to have a sense of humor right?
My chemo will last 6 days and then we wait to take another bone marrow biopsy to ensure my leukemia is in remission. My bone marrow transplant is scheduled for September 13th, 13 is my favorite number so I'm hoping that will provide me with some luck. I found out my donor is a female and she is 20 years old, which is great because she should have a stronger immune system. I'm hopeful this transplant will be the last one. Although, we have heard of people having up to 4 transplants, but they tend to be older patients.
I'm in a different wing this time so I don't have my old nurses who I really liked but I'm sure I'll get to know these nurses just as well. I'll be here for at least two weeks before moving to the transplant floor. For now I'm blessed with a huge room, with four chairs for visitors. With our large group of friends and family here this is very nice. I'm also able to exercise more, they brought me a stepper and taught me the exercise moves that I'll have to do for my physical test required before my transplant. I'm still walking the halls but also have access to a treadmill.
In other news, I realized I never thanked the wonderful women of the Pyjas family. Eric's side of the family is huge and all my cousins and aunts made me the largest get well card ever. Literally they used a huge poster board filled with fun get well cards and messages from everyone. It made me feel really blessed. So thank you to all the Pyjas women who have pulled together and offered so much love and support.
Well I guess that's it for today, I'll try to get back to daily posts, sometimes I feel like I don't have much to say. I am feeling really strong and am ready to get into the transplant so I can start the healing process. Thanks for all your continued love, support and prayers, I'm truly touched and thankful for your support. Much love from 5 north room 18!
Monday, August 19, 2013
Monday, August 19, 2013
Hello family and friends. I haven't written because we have had a lot of last minute changes in treatment options. Last week the doctors, worked hard to get me tested for admission to a clinical trial which would fight my leukemia and act as a flt3 inhibitor. I had a surprise bone marrow biopsy, lung tests, a spinal tap, echo reading and an EKG. All these test were done over two days but the results came back quickly.
I feel really good about my doctor, her name is Eunis Wang, she is known by the staff as the Drill Sargent. Plus, she seems to generally care and will do what she can to make sure I get the best care possible. She is on vacation for two weeks but she called me Saturday morning to go over the change of treatment. She explained that my spinal tap showed that the leukemia has moved into my Central Nervous system and to my brain. This means we have to use two types of chemo one for the blood and another for the CNS. Then she gave me her personal cell number and to call no matter what. That's unheard of, of course she mentioned not to tell the other patients.
I will continue to take Sorafenib for the blood and I will receive spinal taps MWF where they will shoot chemo directly into the spine. The good news is Sorafenib is a flt3 inhibitor, which I think will stop my disease from mutating which makes it stronger. Once we see the leukemia go down to a suitable level or disappear completely we can move forward with the transplant.
I am so thankful for the doctors, nurse practitioners, nurses both inpatient & out patient. Every one treats me like gold. Most every one knows who I am and have been working behind the scenes to fight the disease. Even the floor nurses who treated me in house even have called me to see how I am doing, I feel so safe here at Roswell and I know I am getting the best care possible.
I think that's it for today. I feel strong and confident that this new treatment.. I will win the fight against this disease. Thanks for reading even though the posts have been sporadic. Much love from Roswell's infusion room.
I feel really good about my doctor, her name is Eunis Wang, she is known by the staff as the Drill Sargent. Plus, she seems to generally care and will do what she can to make sure I get the best care possible. She is on vacation for two weeks but she called me Saturday morning to go over the change of treatment. She explained that my spinal tap showed that the leukemia has moved into my Central Nervous system and to my brain. This means we have to use two types of chemo one for the blood and another for the CNS. Then she gave me her personal cell number and to call no matter what. That's unheard of, of course she mentioned not to tell the other patients.
I will continue to take Sorafenib for the blood and I will receive spinal taps MWF where they will shoot chemo directly into the spine. The good news is Sorafenib is a flt3 inhibitor, which I think will stop my disease from mutating which makes it stronger. Once we see the leukemia go down to a suitable level or disappear completely we can move forward with the transplant.
I am so thankful for the doctors, nurse practitioners, nurses both inpatient & out patient. Every one treats me like gold. Most every one knows who I am and have been working behind the scenes to fight the disease. Even the floor nurses who treated me in house even have called me to see how I am doing, I feel so safe here at Roswell and I know I am getting the best care possible.
I think that's it for today. I feel strong and confident that this new treatment.. I will win the fight against this disease. Thanks for reading even though the posts have been sporadic. Much love from Roswell's infusion room.
Wednesday, August 14, 2013
Wednesday August 14, 2013
Good news, we have a date for transplant, September 4th! I will probably check back into the hospital a week before but at least we can get the process started. I just want this all to be over with. I think today we will discuss our options with the doctor on how to get my leukemia in remission which is key to making the transplant work. The funny thing is I have been off all my chemo drugs for a week and my body seems to be holding it's own against the leukemia, that's according to my blood tests. I'll never under estimate the natural healing process that our bodies provide.
I have a lot of thank you's to make so bear with me. First, thank you to my awesome Mom who came out to stay with me during my last days in the hospital. She spent every day by my side and brought a lot of comfort. I am so lucky to have her as a Mom and it was so good to have her here. So thanks Mom, I love you!
Next up, thanks to Catherine Shanahan and her family they sent me a beautiful courage bracelet from Stella & Dot a very cool jewelry company.
A big thank you goes out to The Peterson family; Kirk, Patti, Alex & Eric, they sent an awesome care package filled with relaxation goodies. Basically every thing you would want to feel like I am at the spa. Plus, it came in a beautiful hat box, thank you I love all the goodies.
I also want to thank all those who visit me and help care for me, Eric and I feel so much love and support. Kathy & Chuck Pyjas who help shuttle me around and are always available to help. Dave Vogel who visits almost daily and helps keep Eric sane. Jaidee & Chris Finn who keep me supplied with pillows and goodies. My sister in law, Linda who is letting us live in her house! Jenn & Tim Seyfang and my wonderful nieces and nephews; Tim, Stephanie, Nathan & Sarah. They have kept me supplied with a beautiful collection of art work to make me smile.
Another thanks goes to Holly Clegg who has written several cook books including a cancer cook book. Holly is the sister in law of my Mom's best friend Pam Hill. The two of them came up with the idea to send me several autographed copies that I can give to the nurses who have taken such good care of me. What a great idea and I am so thankful for their donation of books.
Eric and I could not get through all of this without all of you. When we went through this the first time we had basically no family or friends near by, although I did have several visits from my family to help act as care givers. It makes such a difference for both of us to have so many people rally around us.
There are so many people to thank so if I didn't call you out by name please know your support has kept me going and make me feel so loved.
I cannot forget to thank my amazing husband Eric, you are my rock and have proven daily how special our love is. He has had to take on all the responsibilities and never complains all while working. I love you so much and am so proud of our relationship.
I think that is it for now. I'll update you once we know the next course of action. Thanks for the continued support, much love from Buffalo.
I have a lot of thank you's to make so bear with me. First, thank you to my awesome Mom who came out to stay with me during my last days in the hospital. She spent every day by my side and brought a lot of comfort. I am so lucky to have her as a Mom and it was so good to have her here. So thanks Mom, I love you!
Next up, thanks to Catherine Shanahan and her family they sent me a beautiful courage bracelet from Stella & Dot a very cool jewelry company.
A big thank you goes out to The Peterson family; Kirk, Patti, Alex & Eric, they sent an awesome care package filled with relaxation goodies. Basically every thing you would want to feel like I am at the spa. Plus, it came in a beautiful hat box, thank you I love all the goodies.
I also want to thank all those who visit me and help care for me, Eric and I feel so much love and support. Kathy & Chuck Pyjas who help shuttle me around and are always available to help. Dave Vogel who visits almost daily and helps keep Eric sane. Jaidee & Chris Finn who keep me supplied with pillows and goodies. My sister in law, Linda who is letting us live in her house! Jenn & Tim Seyfang and my wonderful nieces and nephews; Tim, Stephanie, Nathan & Sarah. They have kept me supplied with a beautiful collection of art work to make me smile.
Another thanks goes to Holly Clegg who has written several cook books including a cancer cook book. Holly is the sister in law of my Mom's best friend Pam Hill. The two of them came up with the idea to send me several autographed copies that I can give to the nurses who have taken such good care of me. What a great idea and I am so thankful for their donation of books.
Eric and I could not get through all of this without all of you. When we went through this the first time we had basically no family or friends near by, although I did have several visits from my family to help act as care givers. It makes such a difference for both of us to have so many people rally around us.
There are so many people to thank so if I didn't call you out by name please know your support has kept me going and make me feel so loved.
I cannot forget to thank my amazing husband Eric, you are my rock and have proven daily how special our love is. He has had to take on all the responsibilities and never complains all while working. I love you so much and am so proud of our relationship.
I think that is it for now. I'll update you once we know the next course of action. Thanks for the continued support, much love from Buffalo.
Friday, August 9, 2013
August 9, 2013
Hello friends & family, sorry for the delay. We had trouble with the blog and we have limited Internet. Lucky for us we have a 6 am lab appointment at the hospital, so I have Internet for now. Oh and if you couldn't tell, it's me Jenn writing the blog. I'm feeling up to posting again!
So I was released from the hospital on Monday and I have been loving every second of my freedom. Thanks to my sister in law, Linda, we have our own place where we can stay and keep Buster! Our family unit is back together again. I've been eating good food enjoying being outside and just enjoying being with Eric.
I go to clinic at the hospital Monday, Wednesday and Friday. They check my blood and give my IV and breathing treatments. They had to take me off the serafanib, which was my chemo pill. It was spiking my liver levels and causing my white blood counts to plummet. The doctors felt it was doing more harm than good. So they are working on a new plan, hopefully we will learn more about it today. My leukemia seems to be holding and isn't causing me discomfort. Now we need the doctors to figure out how to get me back in remission so we can move forward with the transplant.
I've had quite a few surprises lately. For one my friend Holly flew out from Charlotte just to see me! It was a great surprise, totally unexpected. She even brought me art supplies and stuff to make friendship bracelets, it's been fun revisiting my childhood! I can't thank you enough for the visit. Next up I want to thank Jen Jones for the chocoholics doctor bag. And more thanks to SYNNEX for an excellent cookie and adorable bear. Lastly, thank you Bob and Linda Williams for my 2013 Panini football sticker book with stickers! Another flash back to childhood plus it gets me familiar with the NFL rookies. We have many good memories of visiting you at your shop!
Thanks everyone for your continued support. Much love from the Roswell Park cancer institute!
So I was released from the hospital on Monday and I have been loving every second of my freedom. Thanks to my sister in law, Linda, we have our own place where we can stay and keep Buster! Our family unit is back together again. I've been eating good food enjoying being outside and just enjoying being with Eric.
I go to clinic at the hospital Monday, Wednesday and Friday. They check my blood and give my IV and breathing treatments. They had to take me off the serafanib, which was my chemo pill. It was spiking my liver levels and causing my white blood counts to plummet. The doctors felt it was doing more harm than good. So they are working on a new plan, hopefully we will learn more about it today. My leukemia seems to be holding and isn't causing me discomfort. Now we need the doctors to figure out how to get me back in remission so we can move forward with the transplant.
I've had quite a few surprises lately. For one my friend Holly flew out from Charlotte just to see me! It was a great surprise, totally unexpected. She even brought me art supplies and stuff to make friendship bracelets, it's been fun revisiting my childhood! I can't thank you enough for the visit. Next up I want to thank Jen Jones for the chocoholics doctor bag. And more thanks to SYNNEX for an excellent cookie and adorable bear. Lastly, thank you Bob and Linda Williams for my 2013 Panini football sticker book with stickers! Another flash back to childhood plus it gets me familiar with the NFL rookies. We have many good memories of visiting you at your shop!
Thanks everyone for your continued support. Much love from the Roswell Park cancer institute!
Thursday, August 1, 2013
Thursday August 1st, 2013
Good Afternoon Everyone! We have some great news to share from the hospital. It looks like Jenn will be released from the hospital on Monday as long as the head doctor approves the recommendation. Jenn has been eating well daily, so they removed her TPN IV. She has been working out like an olympic hopeful as well. This past week Jenn has stepped up her laps at the hospital and a half mile daily is the new norm. She also worksout in bed with weights and plays with putty to increase her hand strength as well. This is all very important as Jenn will need as much strength as possible for the bone marrow transplant procedure that is just a few weeks away now. The doctors still need to figure out the best method for attacking this FLT-3 genetic mutation as the doses of chemo are only causing more and more mutations, so they need to fix this break in Jenn's chromosonal chain first and foremost. Once they accomplish that, Jenn will proceed back to Roswell for her bone marrow transplant. With all of this said, Jenn is doing quite well and I have no doubt that she will yet again put this nasty disease behind her and move forward stronger and healthier then ever. Cool news for the day, Jenn was told that she can go outside at Roswell for a half hour or so this weekend with me. I am SOOO excited to get some time outside of these hospital walls with my wife, best friend and overall best woman in the world!! We appreciate all of the cards and well wishes that Jenn has received so far to date, they are all very touching and uplifting; thank to everyone!! One last thing, with us leaving the hospital, please hold off on sending anything to Jenn at this time. I will post our new address tomorrow on the blog and this way I know we will be there to receive any well wishes. Much love from room 5409!!
BTW - Sorry for the format, I had to write this in HTML and it's a huge run on paragraph...UGH!
Monday, July 29, 2013
Monday July 29th, 2013
Good morning everyone,
It was a good weekend for Jenn after receiving such bad news late last week. We have remained positive and the entire team of Dr's here at Roswell have assured us that they will do everything possible for us to cure this cancer once and for all.
Jenn had a switch in treatments this weekend as well. She was accepted into a clinical trial of a new drug that will attack the Leukemia and fix the FLT-3 genetic mutation as well. Unfortunately they cannot administer the new drug until Jenn has been off of the last FLT-3 inhibitor they introduced just this past week. So on Friday August 9th Jenn should be receiving this new treatment. In the meantime, the Dr's have Jenn on a very low dosage chemo to keep the Leukemia counts in check so Jenn can wait out the two weeks before the new clinical drug is introduced.
Jenn has been very strong through all of this, her strength increases daily and she even walked 16 laps yesterday around the hospital floor. 16 laps is a half mile and that is a lot of walking for someone who is still receiving chemo daily. Jenn realizes that she has to build-up her strength in order to be accepted into the bone marrow wing, which will be the next move for us once they cure this genetic mutation and get the cancer into remission again.
I really appreciate all of the visitors that have been coming by to keep Jenn busy and to provide their love and support. Even though sometimes Jenn is just too tired to see visitors, she does know that you were there and that provides Jenn with a lot of strength and encouragement. Without you guys, I would have lost my mind sitting here, so thank you all so much!!!
Jenn has been eating better as well. Lately Jenn has only been eating apple sauce and chicken broth. But last night she had chicken noodle soup and this morning Jenn had two eggs and a pancake!!! YOU GO GIRL!
Thanks for all the cards and well wishes, Jenn really loves getting mail and hearing about all the prayer cards she is on and knowing that everyone is pulling for her. We love you all!
Much love from room 5409!!
It was a good weekend for Jenn after receiving such bad news late last week. We have remained positive and the entire team of Dr's here at Roswell have assured us that they will do everything possible for us to cure this cancer once and for all.
Jenn had a switch in treatments this weekend as well. She was accepted into a clinical trial of a new drug that will attack the Leukemia and fix the FLT-3 genetic mutation as well. Unfortunately they cannot administer the new drug until Jenn has been off of the last FLT-3 inhibitor they introduced just this past week. So on Friday August 9th Jenn should be receiving this new treatment. In the meantime, the Dr's have Jenn on a very low dosage chemo to keep the Leukemia counts in check so Jenn can wait out the two weeks before the new clinical drug is introduced.
Jenn has been very strong through all of this, her strength increases daily and she even walked 16 laps yesterday around the hospital floor. 16 laps is a half mile and that is a lot of walking for someone who is still receiving chemo daily. Jenn realizes that she has to build-up her strength in order to be accepted into the bone marrow wing, which will be the next move for us once they cure this genetic mutation and get the cancer into remission again.
I really appreciate all of the visitors that have been coming by to keep Jenn busy and to provide their love and support. Even though sometimes Jenn is just too tired to see visitors, she does know that you were there and that provides Jenn with a lot of strength and encouragement. Without you guys, I would have lost my mind sitting here, so thank you all so much!!!
Jenn has been eating better as well. Lately Jenn has only been eating apple sauce and chicken broth. But last night she had chicken noodle soup and this morning Jenn had two eggs and a pancake!!! YOU GO GIRL!
Thanks for all the cards and well wishes, Jenn really loves getting mail and hearing about all the prayer cards she is on and knowing that everyone is pulling for her. We love you all!
Much love from room 5409!!
Friday, July 26, 2013
Friday July 26, 2013
Good afternoon everyone,
I was hoping to have some good news to post today and I do... but first we need to talk about what Jenn and I were informed of just last night. Jenn's Leukemia is back already, even though she tested clean on the bone marrow biopsy just one week ago. This means that the Leukemia has mutated and is already impervious to the chemotherapy. So I know that everyone who is reading this right now is shaking their heads and some of you might even be crying. (I know we were last night when we heard this news)
But let me tell you what this all means for Jenn. This is what is commonly referred to as a "bump in the road" to recovery. Jenn had a few choices for treatment since the cancer is back so quickly. They ranged from stopping the treatments, to high dosage chemo, to a clinical drug that will help fix Jenn's genetic mutation (FLT-3). So Jenn's choice was to go with the clinical drugs that will help fix this mutation in her genes, so that this disease will hopefully never come back. Jenn started the drug last night and so far has been able to keep the pills down and thus that is great news!
So what does this mean as far as Jenn's road to recovery. Well it means a few things, first and foremost this means that Jenn will have to wait for the bone marrow transplant until she takes this clinical drug and it starts to show signs of working and fixing this mutation. It also means that Jenn probably won't be released from the hospital until after the bone marrow transplant or a la a few months from now.
We are hopeful that this clinical drug is going to fix the mutation, but they also may administer a newer clinical drug to combat the Leukemia and to help fix the genetic mutation. After that, if neither work, Jenn will get high dosage chemo as a last resort.
So... now we all need to pray for a speedy recovery and pray for these clinical drugs to work.
We also had some GREAT news today, Jenn has 5 matches for her bone marrow donors!!!! This is AWESOME!!
So now the plan is to take Jenn from the Leukemia wing straight to the bone marrow transplant unit. But in the meantime Jenn needs to keep eating and getting physically stronger as the bone marrow transplant is quite physically draining.
We are taking this all in stride as Jenn has dealt with these "bumps in the road" quite well, so now we just need to get over this one.
Thanks for all of the cards, calls and visitors. We love all of you guys!!
Much love from room 5409!!
I was hoping to have some good news to post today and I do... but first we need to talk about what Jenn and I were informed of just last night. Jenn's Leukemia is back already, even though she tested clean on the bone marrow biopsy just one week ago. This means that the Leukemia has mutated and is already impervious to the chemotherapy. So I know that everyone who is reading this right now is shaking their heads and some of you might even be crying. (I know we were last night when we heard this news)
But let me tell you what this all means for Jenn. This is what is commonly referred to as a "bump in the road" to recovery. Jenn had a few choices for treatment since the cancer is back so quickly. They ranged from stopping the treatments, to high dosage chemo, to a clinical drug that will help fix Jenn's genetic mutation (FLT-3). So Jenn's choice was to go with the clinical drugs that will help fix this mutation in her genes, so that this disease will hopefully never come back. Jenn started the drug last night and so far has been able to keep the pills down and thus that is great news!
So what does this mean as far as Jenn's road to recovery. Well it means a few things, first and foremost this means that Jenn will have to wait for the bone marrow transplant until she takes this clinical drug and it starts to show signs of working and fixing this mutation. It also means that Jenn probably won't be released from the hospital until after the bone marrow transplant or a la a few months from now.
We are hopeful that this clinical drug is going to fix the mutation, but they also may administer a newer clinical drug to combat the Leukemia and to help fix the genetic mutation. After that, if neither work, Jenn will get high dosage chemo as a last resort.
So... now we all need to pray for a speedy recovery and pray for these clinical drugs to work.
We also had some GREAT news today, Jenn has 5 matches for her bone marrow donors!!!! This is AWESOME!!
So now the plan is to take Jenn from the Leukemia wing straight to the bone marrow transplant unit. But in the meantime Jenn needs to keep eating and getting physically stronger as the bone marrow transplant is quite physically draining.
We are taking this all in stride as Jenn has dealt with these "bumps in the road" quite well, so now we just need to get over this one.
Thanks for all of the cards, calls and visitors. We love all of you guys!!
Much love from room 5409!!
Tuesday, July 23, 2013
Tuesday July 23rd, 2013
Good afternoon everyone,
Jenn is having another good day today, she met with the doctors and her Bilirubin is down to 3.6 from over 19+ this past weekend. They need the counts to get down to 1.5 or so, but they are very hopeful that we will achieve that number by this upcoming weekend.
Jenn is starting to eat more regularly as well. Today she had an orange that didn't agree with her, but then she ate some honey nut Cheerios today and those seemed to settle just fine. She also inhaled a cookie that was sent to her from the awesome folks at SYNNEX. We just got done taking our daily walk and Jenn did 6 laps!!! Her previous best was only 4 laps; so 6 is incredible!
We also spoke with one of the doctors about Jenn possibly getting out of here in a week or so, before the bone marrow transplant starts. As long as Jenn reaches .5 white blood cell count, they will release her to my sisters house, so we are all praying for that.
Special thanks to everyone at SYNNEX who sent the care package, Jenn already devoured that cookie and she absolutely loves the stuffed teddy bear. :)
Not too much more to update everyone on, but I will say this is by far the best day Jenn has had to date, so that makes us all VERY HAPPY!
Much love from room 5409!
Jenn is having another good day today, she met with the doctors and her Bilirubin is down to 3.6 from over 19+ this past weekend. They need the counts to get down to 1.5 or so, but they are very hopeful that we will achieve that number by this upcoming weekend.
Jenn is starting to eat more regularly as well. Today she had an orange that didn't agree with her, but then she ate some honey nut Cheerios today and those seemed to settle just fine. She also inhaled a cookie that was sent to her from the awesome folks at SYNNEX. We just got done taking our daily walk and Jenn did 6 laps!!! Her previous best was only 4 laps; so 6 is incredible!
We also spoke with one of the doctors about Jenn possibly getting out of here in a week or so, before the bone marrow transplant starts. As long as Jenn reaches .5 white blood cell count, they will release her to my sisters house, so we are all praying for that.
Special thanks to everyone at SYNNEX who sent the care package, Jenn already devoured that cookie and she absolutely loves the stuffed teddy bear. :)
Not too much more to update everyone on, but I will say this is by far the best day Jenn has had to date, so that makes us all VERY HAPPY!
Much love from room 5409!
Monday, July 22, 2013
Monday July 22nd, 2013
Good afternoon everyone,
Jenn is doing well today, she had to have her central line put back in yesterday as she accidentally snagged it on the hospital bed and slightly ripped it out early Sunday morning. They have since replaced the line last night and all is well with that.
Jenn is having her best day to date. She had a pudding this morning with apple juice and now is eating a bagel and cream cheese. This is the most that Jenn has eaten in 18 days!
We had to shave off all of Jenn's hair today, it was getting nappy and falling out, so it was time to say goodbye to her hair. While Jenn looks beautiful without hair, it made me very sad to shave it off. She hadn't had a full set of hair until most recently and I think the reality set in for me that she won't have a full head of hair again for another year or so.
Other than that, we are just waiting to talk to the team of doctors, but I can also tell you that Jenn's fungal lung infection is starting to look a little better than it did last week. So that is a step in the right direction. Lastly on the health front, Jenn's liver is starting to work properly again, so her Bilirubin levels are down to 5. Now we just need those levels to come down to 1.5 or so and she will be back to normal if you will.
I wanted to take a minute to thank everyone here at Roswell Park. From Dr Wang and Dr Wetzler to the nursing staff that is just simply AMAZING! All of the nurses have been super nice and supportive so far, Jenn literally hasn't had anyone that she doesn't like and the same cannot be said for when we were at Duke previously. The staff here is caring, attentive and quite funny. They all just adore Jenn and the love that she spreads continually. Jenn has been known to ask the nursing staff how their day is going... even while being as sick as she has been most recently. But as we all know, Jenn is always looking out for others and their well being.
Well that is it for today from room 5409, we all just need to pray that Jenn recovers from this first round of treatment quickly. The faster she recovers from this first round, the sooner they will accept her in the bone marrow transplant wing.
Much love from room 5409!!
Jenn is doing well today, she had to have her central line put back in yesterday as she accidentally snagged it on the hospital bed and slightly ripped it out early Sunday morning. They have since replaced the line last night and all is well with that.
Jenn is having her best day to date. She had a pudding this morning with apple juice and now is eating a bagel and cream cheese. This is the most that Jenn has eaten in 18 days!
We had to shave off all of Jenn's hair today, it was getting nappy and falling out, so it was time to say goodbye to her hair. While Jenn looks beautiful without hair, it made me very sad to shave it off. She hadn't had a full set of hair until most recently and I think the reality set in for me that she won't have a full head of hair again for another year or so.
Other than that, we are just waiting to talk to the team of doctors, but I can also tell you that Jenn's fungal lung infection is starting to look a little better than it did last week. So that is a step in the right direction. Lastly on the health front, Jenn's liver is starting to work properly again, so her Bilirubin levels are down to 5. Now we just need those levels to come down to 1.5 or so and she will be back to normal if you will.
I wanted to take a minute to thank everyone here at Roswell Park. From Dr Wang and Dr Wetzler to the nursing staff that is just simply AMAZING! All of the nurses have been super nice and supportive so far, Jenn literally hasn't had anyone that she doesn't like and the same cannot be said for when we were at Duke previously. The staff here is caring, attentive and quite funny. They all just adore Jenn and the love that she spreads continually. Jenn has been known to ask the nursing staff how their day is going... even while being as sick as she has been most recently. But as we all know, Jenn is always looking out for others and their well being.
Well that is it for today from room 5409, we all just need to pray that Jenn recovers from this first round of treatment quickly. The faster she recovers from this first round, the sooner they will accept her in the bone marrow transplant wing.
Much love from room 5409!!
Saturday, July 20, 2013
Saturday July 20th, 2013
Good morning everyone!
GREAT NEWS!!! Jenn had her 14 day bone marrow biopsy a couple of days ago and the results just came in and the news is... GREAT!!!! Her biopsy came back clean, so the Leukemia is in remission and now we just need to get Jenn out and about building up her strength so that we can move into the bone marrow transplant wing by the end of the month.
Today Jenn is feeling a little tired, but she is still committed to getting out of bed to take a walk and even to take a shower today. Jenn is on an inhaler for the fungal lung infection and so far that is the only thing that is still causing her to be nauseous. Her eating restrictions had been clear liquids only, but they removed that restriction yesterday a little bit and she is now allowed to eat full liquids today. Cream of wheat, ice cream and rainbow sherbet are some of the examples of what Jenn can eat now. It certainly beats apple juice, chicken and vegetable broth...
I also wanted to thank everyone who has sent well wishes and cards. Jenn absolutely loves reading the cards and feeling the love that everyone around the country has been sending her way. Jenn is a strong, strong, strong fighter and has been nothing but inspirational through this entire journey. She has humbled me beyond words (and for anyone that knows me, that is next to impossible...) with her courageousness and drive.
I wanted to point out one very important thing for visitors to see Jenn. Please keep in mind that Jenn has NO immune system at this point. So if you plan on visiting, please make certain you are 100% healthy and haven't been sick for over a week. If Jenn were to come into contact with even the common cold right now, she would be in trouble. So please stay at home if you were sick recently or have anyone in your household that is currently sick. Also, please use the hand sanitizer at the doors as you enter so that anything you might have come into contact with is killed with the alcohol before you enter the room. Thanks so much for thinking of Jenn health before coming to visit!!
Much love from room 5409 :)
GREAT NEWS!!! Jenn had her 14 day bone marrow biopsy a couple of days ago and the results just came in and the news is... GREAT!!!! Her biopsy came back clean, so the Leukemia is in remission and now we just need to get Jenn out and about building up her strength so that we can move into the bone marrow transplant wing by the end of the month.
Today Jenn is feeling a little tired, but she is still committed to getting out of bed to take a walk and even to take a shower today. Jenn is on an inhaler for the fungal lung infection and so far that is the only thing that is still causing her to be nauseous. Her eating restrictions had been clear liquids only, but they removed that restriction yesterday a little bit and she is now allowed to eat full liquids today. Cream of wheat, ice cream and rainbow sherbet are some of the examples of what Jenn can eat now. It certainly beats apple juice, chicken and vegetable broth...
I also wanted to thank everyone who has sent well wishes and cards. Jenn absolutely loves reading the cards and feeling the love that everyone around the country has been sending her way. Jenn is a strong, strong, strong fighter and has been nothing but inspirational through this entire journey. She has humbled me beyond words (and for anyone that knows me, that is next to impossible...) with her courageousness and drive.
I wanted to point out one very important thing for visitors to see Jenn. Please keep in mind that Jenn has NO immune system at this point. So if you plan on visiting, please make certain you are 100% healthy and haven't been sick for over a week. If Jenn were to come into contact with even the common cold right now, she would be in trouble. So please stay at home if you were sick recently or have anyone in your household that is currently sick. Also, please use the hand sanitizer at the doors as you enter so that anything you might have come into contact with is killed with the alcohol before you enter the room. Thanks so much for thinking of Jenn health before coming to visit!!
Much love from room 5409 :)
Friday, July 19, 2013
Friday July 19th, 2013
Well family, friends and onlookers,
Not too sure how to say this, so we will just jump right in... Jennifer's Leukemia has come back and we are now at the Roswell Park Cancer Institute in Buffalo, NY.
This all started back on July 2nd when Jenn wasn't feeling too well with abdominal pains and bloating. This continued into July 3rd when our friends Jaidee and Chris Finn were planning on attending the Dave Matthews Band show here in Buffalo with myself, Dave Vogel and Dave Hino. I should have known that this was the cancer coming back, because anyone who knows Jenn, knows that she would NEVER miss a Dave Matthews Show... EVER!
On the morning of July 4th I took Jenn to an Immediate Care facility here in Buffalo and they reviewed her issues and decided to send her to Millard Fillmore Suburban Hospital immediately. upon arriving at Millard the ER Doctors stated that they believe she had an intestinal blockage and that everything was going to be alright... Well that couldn't have been further from the truth. After taking some blood and reviewing the slides, the Dr came into the room and shocked us all at once. I won't ever forget the way he delivered the news. He said "Guys, I have only had to say this once before in my career, so here goes. Your Leukemia is back and is out of control. You need to get to Roswell Park ASAP."
All I kept thinking to myself is this cannot be happening, this is the best woman in the world and you cannot be telling me that her cancer is back... Tell me she has a blockage or the flu, but not cancer again. This poor girl has been through hell and back, but like a Phoenix rising from the ashes, she will get through this. This is just another unfortunate chapter in our lives and in Jenn's journey.
So, this was around 4pm on the 4th of July. They had Duke call me and Dr Horowitz from Duke spoke to me about Jenn's current condition. She had a white blood cell count of 132, which is 10 times what a normal reading should be. Dr Horowitz told me that the bloating was from the white blood cells and that her Kidneys were not functioning at all and that they saw signs in the CT Scan that indicated permanent kidney damage. Dr Horowitz also mentioned that flying Jenn down to Duke was far to risky, so he agreed that going to Roswell was the most effective course of treatment.
Jenn was immediately accepted by Roswell and she was whisked away in an ambulance to where we are today at the Roswell Park Cancer Institute. We were met at Roswell by Dr Wetzler, the head of the Leukemia division at Roswell. He was very nice, but explained that Jenn was in very serious condition and that they needed to get her on an Apheresis machine immediately to filter out as many of the white blood cells as possible. When your white blood cell counts get that high, your blood runs VERY thick and typically will cause major organ damage (brain, heart, kidneys, lungs and liver). Well after receiving that treatment, Jenn's white blood cell count came down to 32 which was amazing!
We found out on July 5th that Jenn would be here at Roswell for 4-6 weeks or so. She was nervous and kept asking me if she was a goner. This had to be the worst conversation we have ever had. How do you explain to your wife that her future is uncertain at this time??? Sooo, we chatted for sometime and I explained how fortunate she is to be at a world class cancer center. We also talked about how blessed we are that the Doctors were all available on the 4th of July and treated her immediately. Then we talked about how strong of a family unit we are and that no matter how high the mountain is, we will climb it and conquer this latest challenge. Jenn was stable with that response and decided that we would fight this and make it through this once and for all.
Without getting into fine details, we have been on a roller coaster ride ever since.
As of today, we know the following.
Jenn will be here for a while, she will need 4-6 weeks to get the Leukemia back into remission and to get stronger before going into the Bone Marrow Transplant Unit here at Roswell. Yes, Jenn will need to go back through the bone marrow transplant yet again. All in, we will probably be here in Buffalo till late November or into December.
Jenn's kidneys are not damaged and none of her major organs suffered any damage at all. But she hasn't eaten since we arrived, so she is on a TPN IV of proteins, etc. Jenn also had her 14 day bone marrow biopsy done yesterday so we are patiently awaiting those results. The fungal lung infection that she previously had at Duke is back, so that is the biggest issue to date. It causes Jenn to breathe heavy at times and induces pneumonia like fluid in the lungs. She also is having issues with her liver as the anti fungal medicines are causing very high levels of Bilirubin.
We are walking 2-3 laps a day to help get Jenn stronger, for her pending bone marrow transplant. Outside of that, Jenn is doing well and we expect to get through this just like we did at Duke. The Dr's have assured us that people sometimes have to go through 3 or 4 bone marrow transplants before the Leukemia stays in remission. So our new motto is that the second time is the charm... We don't want to go through this a 3rd time at all. I will be updating the blog daily from now on and we apologize for the delay, there just has been a lot going on lately.
Lastly, I would like to thank everyone who has donated platelets and blood. Jaidee found out that there is a donor center downstairs at Roswell and the donations can be directed for use by Jenn. This is amazing and most appreciated. So far I know that Jaidee, Christina, my dad and myself have all donated and thank you all so much!!! If you want to donate, please contact the donor center at Roswell (716) 845-8275
Also, special thanks for all the gifts, please note that Jenn cannot receive live plants or flowers, so please hold off on sending flowers, anything else is most appreciated. Thanks to Crystal and Phil Shumaker for the amazing flowers, also thanks to Jason and Shannon Aldrich for their beautiful flowers as well. Thanks to Jaidee, Chris and the entire Schweitzer family for the pillows, aromatherapy, art supplies and various other pick me ups!! Thanks to Scott And Tucker Ochs for Jenn's awesome I-Pad Mini and Les Miserables DVD. Dave Hino gets love for all the gossip mags and Dave Matthews DVDs for Jenn to watch. Thanks to the Vogels for the sweet coloring book and colored pencils, etc. Thanks to everyone for the cards and heart felt messages. Mom and Dad, I couldn't do all of this without you, your love and support has always been appreciated! Kim, thanks for being an awesome mother-in-law, your love and support is always felt and your caring and dedication is second to none. Final thanks to all of my friends (Radloff, Cartonia, Hino, Olsen, Mucica and Szczesek) for everything you have done!
Jenn's address here is:
Jennifer Pyjas
Roswell Park Cancer Institute
Elm and Carlton St. Room 5409 West
Buffalo, NY 14263
Much love from room 5409!!
Not too sure how to say this, so we will just jump right in... Jennifer's Leukemia has come back and we are now at the Roswell Park Cancer Institute in Buffalo, NY.
This all started back on July 2nd when Jenn wasn't feeling too well with abdominal pains and bloating. This continued into July 3rd when our friends Jaidee and Chris Finn were planning on attending the Dave Matthews Band show here in Buffalo with myself, Dave Vogel and Dave Hino. I should have known that this was the cancer coming back, because anyone who knows Jenn, knows that she would NEVER miss a Dave Matthews Show... EVER!
On the morning of July 4th I took Jenn to an Immediate Care facility here in Buffalo and they reviewed her issues and decided to send her to Millard Fillmore Suburban Hospital immediately. upon arriving at Millard the ER Doctors stated that they believe she had an intestinal blockage and that everything was going to be alright... Well that couldn't have been further from the truth. After taking some blood and reviewing the slides, the Dr came into the room and shocked us all at once. I won't ever forget the way he delivered the news. He said "Guys, I have only had to say this once before in my career, so here goes. Your Leukemia is back and is out of control. You need to get to Roswell Park ASAP."
All I kept thinking to myself is this cannot be happening, this is the best woman in the world and you cannot be telling me that her cancer is back... Tell me she has a blockage or the flu, but not cancer again. This poor girl has been through hell and back, but like a Phoenix rising from the ashes, she will get through this. This is just another unfortunate chapter in our lives and in Jenn's journey.
So, this was around 4pm on the 4th of July. They had Duke call me and Dr Horowitz from Duke spoke to me about Jenn's current condition. She had a white blood cell count of 132, which is 10 times what a normal reading should be. Dr Horowitz told me that the bloating was from the white blood cells and that her Kidneys were not functioning at all and that they saw signs in the CT Scan that indicated permanent kidney damage. Dr Horowitz also mentioned that flying Jenn down to Duke was far to risky, so he agreed that going to Roswell was the most effective course of treatment.
Jenn was immediately accepted by Roswell and she was whisked away in an ambulance to where we are today at the Roswell Park Cancer Institute. We were met at Roswell by Dr Wetzler, the head of the Leukemia division at Roswell. He was very nice, but explained that Jenn was in very serious condition and that they needed to get her on an Apheresis machine immediately to filter out as many of the white blood cells as possible. When your white blood cell counts get that high, your blood runs VERY thick and typically will cause major organ damage (brain, heart, kidneys, lungs and liver). Well after receiving that treatment, Jenn's white blood cell count came down to 32 which was amazing!
We found out on July 5th that Jenn would be here at Roswell for 4-6 weeks or so. She was nervous and kept asking me if she was a goner. This had to be the worst conversation we have ever had. How do you explain to your wife that her future is uncertain at this time??? Sooo, we chatted for sometime and I explained how fortunate she is to be at a world class cancer center. We also talked about how blessed we are that the Doctors were all available on the 4th of July and treated her immediately. Then we talked about how strong of a family unit we are and that no matter how high the mountain is, we will climb it and conquer this latest challenge. Jenn was stable with that response and decided that we would fight this and make it through this once and for all.
Without getting into fine details, we have been on a roller coaster ride ever since.
As of today, we know the following.
Jenn will be here for a while, she will need 4-6 weeks to get the Leukemia back into remission and to get stronger before going into the Bone Marrow Transplant Unit here at Roswell. Yes, Jenn will need to go back through the bone marrow transplant yet again. All in, we will probably be here in Buffalo till late November or into December.
Jenn's kidneys are not damaged and none of her major organs suffered any damage at all. But she hasn't eaten since we arrived, so she is on a TPN IV of proteins, etc. Jenn also had her 14 day bone marrow biopsy done yesterday so we are patiently awaiting those results. The fungal lung infection that she previously had at Duke is back, so that is the biggest issue to date. It causes Jenn to breathe heavy at times and induces pneumonia like fluid in the lungs. She also is having issues with her liver as the anti fungal medicines are causing very high levels of Bilirubin.
We are walking 2-3 laps a day to help get Jenn stronger, for her pending bone marrow transplant. Outside of that, Jenn is doing well and we expect to get through this just like we did at Duke. The Dr's have assured us that people sometimes have to go through 3 or 4 bone marrow transplants before the Leukemia stays in remission. So our new motto is that the second time is the charm... We don't want to go through this a 3rd time at all. I will be updating the blog daily from now on and we apologize for the delay, there just has been a lot going on lately.
Lastly, I would like to thank everyone who has donated platelets and blood. Jaidee found out that there is a donor center downstairs at Roswell and the donations can be directed for use by Jenn. This is amazing and most appreciated. So far I know that Jaidee, Christina, my dad and myself have all donated and thank you all so much!!! If you want to donate, please contact the donor center at Roswell (716) 845-8275
Also, special thanks for all the gifts, please note that Jenn cannot receive live plants or flowers, so please hold off on sending flowers, anything else is most appreciated. Thanks to Crystal and Phil Shumaker for the amazing flowers, also thanks to Jason and Shannon Aldrich for their beautiful flowers as well. Thanks to Jaidee, Chris and the entire Schweitzer family for the pillows, aromatherapy, art supplies and various other pick me ups!! Thanks to Scott And Tucker Ochs for Jenn's awesome I-Pad Mini and Les Miserables DVD. Dave Hino gets love for all the gossip mags and Dave Matthews DVDs for Jenn to watch. Thanks to the Vogels for the sweet coloring book and colored pencils, etc. Thanks to everyone for the cards and heart felt messages. Mom and Dad, I couldn't do all of this without you, your love and support has always been appreciated! Kim, thanks for being an awesome mother-in-law, your love and support is always felt and your caring and dedication is second to none. Final thanks to all of my friends (Radloff, Cartonia, Hino, Olsen, Mucica and Szczesek) for everything you have done!
Jenn's address here is:
Jennifer Pyjas
Roswell Park Cancer Institute
Elm and Carlton St. Room 5409 West
Buffalo, NY 14263
Much love from room 5409!!
Tuesday, March 5, 2013
One Year Check up & 1st Birthday for my immune system!
Hello family and friends, thanks for being patient with me as I know I was planning on writing sooner. On March 1st, Eric and I celebrated my first birthday with my new immune system! This was two days after completing my one year check up at the Duke Adult Bone Marrow Transplant Clinic. My check up went awesome, they were very pleased with my blood reports and my bone marrow biopsy came back clean. Meaning there was no sign of any leukemia cells and my marrow is producing normal amounts of cells. I'm over 98% donor bone marrow which is perfect! Dr. Horwitz preformed the biopsy and it was almost painless, I didn't even have to take a sedative. Plus, when they drew my blood for labs they took 13 vials and I didn't puke or feel uneasy....13 is my lucky number after all!
The only thing the doctors didn't like in my labs was I have an iron overload in my blood. This is typical for transplant patients and it's not urgent but I need to work on getting my iron levels reduced. The only problem is the only way to do that is to start on a medication or donate two pints a blood per month until the iron amount goes down. One down side is that any blood I donate will have to be discarded as they can't use it in the blood bank. So, I talked to Eric about it and we are thinking of going the medication route. He made a good point that donating blood twice a month could put me at risk for infections and cause me some pain since I don't have the convenience of a pic line or Hickman port. According to Duke, high iron in the blood can predispose me to infections and can be hard on my liver, heart and kidneys. So I have to say I'm leaning toward medication even though I hate to be on more medicine than I need to, but I'm not too fond of giving blood. All in all it's not a big deal considering I'm alive, living cancer free and I have a new lease on life! :)
I'm so happy I can write this post and share my good news with all of you. You have all brought me so much hope, faith and peace and I will forever remember how loved and supported I am. So THANK YOU to everyone who has been with me through this journey! Through God, love and support from all my loved ones and friends, I have taken this challenge and come out a better person in the end. I'm so much happier and healthier than I've ever been and I'm not going to let that change! I think that's it for today, I will probably not write as often any more but I won't go dark. :) So stay tuned for random posts as I continue my journey through life. Much love from Travelers Rest!
The only thing the doctors didn't like in my labs was I have an iron overload in my blood. This is typical for transplant patients and it's not urgent but I need to work on getting my iron levels reduced. The only problem is the only way to do that is to start on a medication or donate two pints a blood per month until the iron amount goes down. One down side is that any blood I donate will have to be discarded as they can't use it in the blood bank. So, I talked to Eric about it and we are thinking of going the medication route. He made a good point that donating blood twice a month could put me at risk for infections and cause me some pain since I don't have the convenience of a pic line or Hickman port. According to Duke, high iron in the blood can predispose me to infections and can be hard on my liver, heart and kidneys. So I have to say I'm leaning toward medication even though I hate to be on more medicine than I need to, but I'm not too fond of giving blood. All in all it's not a big deal considering I'm alive, living cancer free and I have a new lease on life! :)
I'm so happy I can write this post and share my good news with all of you. You have all brought me so much hope, faith and peace and I will forever remember how loved and supported I am. So THANK YOU to everyone who has been with me through this journey! Through God, love and support from all my loved ones and friends, I have taken this challenge and come out a better person in the end. I'm so much happier and healthier than I've ever been and I'm not going to let that change! I think that's it for today, I will probably not write as often any more but I won't go dark. :) So stay tuned for random posts as I continue my journey through life. Much love from Travelers Rest!
Tuesday, February 26, 2013
Home Sweet Home
Hello family and friends, I hope life has been treating you well. Life has certainly been treating us well, we are all moved in and settled in our new home! I seriously smile every day and think, 'wow, I'm so blessed and happy that we have found our home!'. After all we have been through in the past two years, it is so nice to finally have a place we can call our own, where we can begin our new lives together.
It's hard to believe last year at this time, I was rocking my first buzz cut and walking miles around the Duke Adult Bone Marrow Transplant unit, prepping for my bone marrow transplant. Today was "day: -3", the day they started me on Cytoxan, which is the drug that really kicked my ass. I was doing fine for about five days and as Eric says, then I just fell apart. Eventually, I made it through the fevers, night sweats, puking, inability to eat, hallucinations, lung infection and countless other things that I really don't want to name. Today, I feel amazing and I'm overwhelmed by the number of blessings in my life.
Tomorrow, I head up to Duke for my one year check up, it's not really a full year since my transplant was given on leap day. February 29th would be this Friday so that's when Eric and I will celebrate my 1st birthday with my new immune system. I'm really excited to get this check up over with, I have to have a bone marrow biopsy and a full pulmonary test and exam. I'm not as nervous about the biopsy as I have been in the past since it will be done in the Adult Bone Marrow Transplant clinic where they literally do hundreds a week. They are professionals and know how to do it as quick as possible so it's not as painful. Plus, this should also be my last biopsy for a long time. If it comes back clean then we the'll be no reason to test it again unless my blood tests show signs of the leukemia coming back (which it shouldn't).
I'm writing from my window desk, the fog is covering Paris Mountain across the street. It's beautiful and peaceful and I'm so thankful for it all. I will blog later this week with news from my check up. Much love from Travelers Rest! :)
It's hard to believe last year at this time, I was rocking my first buzz cut and walking miles around the Duke Adult Bone Marrow Transplant unit, prepping for my bone marrow transplant. Today was "day: -3", the day they started me on Cytoxan, which is the drug that really kicked my ass. I was doing fine for about five days and as Eric says, then I just fell apart. Eventually, I made it through the fevers, night sweats, puking, inability to eat, hallucinations, lung infection and countless other things that I really don't want to name. Today, I feel amazing and I'm overwhelmed by the number of blessings in my life.
Tomorrow, I head up to Duke for my one year check up, it's not really a full year since my transplant was given on leap day. February 29th would be this Friday so that's when Eric and I will celebrate my 1st birthday with my new immune system. I'm really excited to get this check up over with, I have to have a bone marrow biopsy and a full pulmonary test and exam. I'm not as nervous about the biopsy as I have been in the past since it will be done in the Adult Bone Marrow Transplant clinic where they literally do hundreds a week. They are professionals and know how to do it as quick as possible so it's not as painful. Plus, this should also be my last biopsy for a long time. If it comes back clean then we the'll be no reason to test it again unless my blood tests show signs of the leukemia coming back (which it shouldn't).
I'm writing from my window desk, the fog is covering Paris Mountain across the street. It's beautiful and peaceful and I'm so thankful for it all. I will blog later this week with news from my check up. Much love from Travelers Rest! :)
Friday, January 4, 2013
2013 New Beginnings!
Happy New Year everyone! I'm sorry for the long delay between posts, I have no excuse except for being busy and feeling like I might not have anything exciting to say. However, I've been holding a lot in for the past month and I'm finally ready to share.....
We are in the process of buying our first home and will be moving to Travelers Rest, SC by the end of this month! Travelers Rest is just outside of Greenville, SC, in the foothills of the Blue Ridge Mountains. We found a house that we fell in love with and we are so excited to move in and start this new chapter of our lives.
In the health department, I am doing excellent! At the end of February, I will go for my one year check up. Once I clear this hurdle all my restrictions will be lifted! Which means, I'll finally be able to play in dirt, go swimming and eat raw foods! :) I'm also excited to report that I have curly hair! It's so fun, I just hope it stays this way. I've even had a couple people compliment my hair cut, I giggle and think to myself "all I had to do is loose my hair to chemo...".
I'm so thrilled to be able to share this exciting news with you. Thank you for providing amazing support and an outlet for me during a difficult time. I look forward to updating you with tidbits as things unfold, my posts will probably be sporadic but if you'll still read the blog, I'll still write. :)
We are in the process of buying our first home and will be moving to Travelers Rest, SC by the end of this month! Travelers Rest is just outside of Greenville, SC, in the foothills of the Blue Ridge Mountains. We found a house that we fell in love with and we are so excited to move in and start this new chapter of our lives.
In the health department, I am doing excellent! At the end of February, I will go for my one year check up. Once I clear this hurdle all my restrictions will be lifted! Which means, I'll finally be able to play in dirt, go swimming and eat raw foods! :) I'm also excited to report that I have curly hair! It's so fun, I just hope it stays this way. I've even had a couple people compliment my hair cut, I giggle and think to myself "all I had to do is loose my hair to chemo...".
I'm so thrilled to be able to share this exciting news with you. Thank you for providing amazing support and an outlet for me during a difficult time. I look forward to updating you with tidbits as things unfold, my posts will probably be sporadic but if you'll still read the blog, I'll still write. :)
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