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!!

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!!