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.
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