Sorry about the last post. The computer freezes up for some reason, I must take too long. I finally got back here to post that one from a long time ago.
Since I'm on I will update you as quickly as I can before all freezes over!
Brett's doing great. He's feeling good... looking good... and acting as though nothing happened. I think he feels like a teenage being given the privilege of staying home alone. As far as I can tell he's obeying the rules. And yes my spies are on the job.
He started rollerblading as his latest exercise. And he's riding his bike. Today was his first real ride, he rode an hour and even got dressed in his real bike gear. Fun to see him fill his water bottle and walk out the door, even though he was wearing his bike shoes in the house!!
Next appointment is Tuesday afternoon. Anticipating more good news and more changes in his drugs, hopefully all decreasing. What we are looking forward to most is no more IV bags at night. Actually, tonight might be the last night! If they take him off the IV magnesium, he will be able to get the hickman cath removed from his chest at the next doctor visit. He will be so relieved to not have to take care of that thing anymore. No cath will be one more positive to add to the list!
I promise to update you after Tuesday...and hopefully we will have all good news to report
peace, love and happiness until next time
Sunday, June 20, 2010
Sunday, June 13, 2010
Day +46
Day +46, funny how time flies.
Friday's appointment was great. His blood counts are all good. His white count dropped a little, which we were told is normal. If it continues to drop they will take him off the bactrium and put him on a different antibiotic. I guess bactrium can cause a little havek with your wbc.
He had a DNA test done a few weeks ago to make sure Tyler's cells are taking over. Without going into too much detail we were told that one test showed 83% "take over" and the other test showed 100%! It's all good news. They will redraw that test about 1 month after the last one to see if he is at 100% on both tests. That is the goal!
He's still doing great ... taking 2 walks a day, about 1 hour each. And his spirits are high. World cup is taking over the tv's...thank goodness since hockey is over. OH and he's so looking forward to no caregiver all day while I'm at work. Yes, he won again in his pursuit to get his way! No more need for 24 hour care as long as he's doing this good. If anything changes we will be calling in the reenforcments but for now we are planning on just normal visits through out the day from those who have offered to check in on him. Hoping these "visits" will get him out doing a little more fun stuff. I'm sure this will be more difficult for me to get used to. I went to the grocery store yesterday and felt a little panicked when I would think of him alone. I know I don't need to worry so much, but I just can't help it
I will continue to be amazed at this miracle we are living through and I will be forever grateful for all the help, support, love and prayers we have received. Words will never be able to full express how we feel... but I think a little worry will always be in my mind. No matter how positive I remain
Friday's appointment was great. His blood counts are all good. His white count dropped a little, which we were told is normal. If it continues to drop they will take him off the bactrium and put him on a different antibiotic. I guess bactrium can cause a little havek with your wbc.
He had a DNA test done a few weeks ago to make sure Tyler's cells are taking over. Without going into too much detail we were told that one test showed 83% "take over" and the other test showed 100%! It's all good news. They will redraw that test about 1 month after the last one to see if he is at 100% on both tests. That is the goal!
He's still doing great ... taking 2 walks a day, about 1 hour each. And his spirits are high. World cup is taking over the tv's...thank goodness since hockey is over. OH and he's so looking forward to no caregiver all day while I'm at work. Yes, he won again in his pursuit to get his way! No more need for 24 hour care as long as he's doing this good. If anything changes we will be calling in the reenforcments but for now we are planning on just normal visits through out the day from those who have offered to check in on him. Hoping these "visits" will get him out doing a little more fun stuff. I'm sure this will be more difficult for me to get used to. I went to the grocery store yesterday and felt a little panicked when I would think of him alone. I know I don't need to worry so much, but I just can't help it
I will continue to be amazed at this miracle we are living through and I will be forever grateful for all the help, support, love and prayers we have received. Words will never be able to full express how we feel... but I think a little worry will always be in my mind. No matter how positive I remain
Wednesday, June 9, 2010
DAY?
I have no idea what day of battle this is! Have I gotten too comfortable with this whole thing? I don't know but I do know that things are still going great. Brett is still doing well. His appointment last week was again very uneventful. Counts were all good and no problems to mention. We are anticipating more of the same at Friday's appointment but are expecting Dr Uberti to give the final ok of no more 24 hour care. He's ready for some alone time I'm sure. Kind of awkward to have to have a sitter at 41 huh?
Jim and Sherry are almost ready to head back to Nova Scotia now that the 24 hour care giving will be over. It has been so helpful to have them here during the day so that I can work without worry. Uncle Gary questioned Brett yesterday asking if I was going to be putting an ankle monitor on him to make sure he doesn't sneak on the mower during his first week of freedom. Not funny Gary... I have spies that will be making covert missions to make sure no mowing or tree trimming occurs! .... you think I'm kidding don't you?
Thank you Jim and Sherry for all the help and love you gave us during these past few months. Thanks for all the yard work, tree trimming, weeding... thanks for everything. Thank you in advance for the homemade pizza you will be making us tomorrow... we've been craving it for about 15 years!! We love you and can't wait for the day we can head to Holland for a day at the beach or a hike on one of your many trails! OH and we can't wait to sit on your new couch and eat at your new table.:)
Our summer is filling up with great plans that we are looking forward to with more excitement than a small child. First, an open house celebration the graduation for our niece Kera! Then on the weekend of the 4th we have the Stornant family "Camporama 2010". My family started a little crazy tradition (most of our traditions are crazy) of camping together for a long weekend - the tradition started when my sister and brother in law, Claudia and Hank invited all 48 of us up to their home on the lake for a weekend full of fun, food,"jack and crack,"and many special organized events and competitions too numerous to mention. Every minute planned to be filled with some kind of fun...literally every minute!
Last year my brother and sister in law Mike and Amy carried on the tradition at their cottage on Lake Michigan with more fun, of course more food, an intense game of capture the flag, a friendly boat making competition "the ricotta regatta" (yes the boats had to race in lake michigan with a container of ricotta cheese on it, what do you expect we're crazy Italians), campfire songs, and so much more. This has become a great experience for our family and Brett is looking forward to it so much.
Travis, Christine and the boys are planning a trip here the next week...again Brett is looking forward to fun with his side kick and soul mate Isak. Slip and slide, riding the motor scooter, going for a ride on the "double" also known as the tandem, and just playing as much as possible. He's looking forward to adding Fin to the mix this year since he will be "of age" to participate in all the fun!
After that.... we are hoping for another trip to "Mary Sue's beach house" for more beach fun and entertainment with the Stornant family to celebrate Mary Sue's birthday again.
July looks pretty full huh?
Now the question remains... since all of this will be happening before Brett's 100 days are up and most of his restrictions are lifted, will we be allowed to participate in it all? Do you take the risk of being exposed to all the people especially all the kids who seem to hoard all the little germs that could potentially harm Brett? When do you start to live again? When can we travel to a destination that is more than 1 hour from Karmanos? When can we just go and do whatever we want without worry? Isn't life better with family and friends around? Isn't it better to laugh and play and have "some enjoy"? Is life going to get back to normal soon enough to enjoy this summer and all the good times that are to be had?
I know if Brett gets his way we will be enjoying this summer, but we can't forget that his immune system is as delicate as a new baby right now. So,we'll hold up as long as we can without much to do with the outside world so we can enjoy the future summer plans with family and friends. We look forward to the fun!
peace, love and happiness until next time
Jim and Sherry are almost ready to head back to Nova Scotia now that the 24 hour care giving will be over. It has been so helpful to have them here during the day so that I can work without worry. Uncle Gary questioned Brett yesterday asking if I was going to be putting an ankle monitor on him to make sure he doesn't sneak on the mower during his first week of freedom. Not funny Gary... I have spies that will be making covert missions to make sure no mowing or tree trimming occurs! .... you think I'm kidding don't you?
Thank you Jim and Sherry for all the help and love you gave us during these past few months. Thanks for all the yard work, tree trimming, weeding... thanks for everything. Thank you in advance for the homemade pizza you will be making us tomorrow... we've been craving it for about 15 years!! We love you and can't wait for the day we can head to Holland for a day at the beach or a hike on one of your many trails! OH and we can't wait to sit on your new couch and eat at your new table.:)
Our summer is filling up with great plans that we are looking forward to with more excitement than a small child. First, an open house celebration the graduation for our niece Kera! Then on the weekend of the 4th we have the Stornant family "Camporama 2010". My family started a little crazy tradition (most of our traditions are crazy) of camping together for a long weekend - the tradition started when my sister and brother in law, Claudia and Hank invited all 48 of us up to their home on the lake for a weekend full of fun, food,"jack and crack,"and many special organized events and competitions too numerous to mention. Every minute planned to be filled with some kind of fun...literally every minute!
Last year my brother and sister in law Mike and Amy carried on the tradition at their cottage on Lake Michigan with more fun, of course more food, an intense game of capture the flag, a friendly boat making competition "the ricotta regatta" (yes the boats had to race in lake michigan with a container of ricotta cheese on it, what do you expect we're crazy Italians), campfire songs, and so much more. This has become a great experience for our family and Brett is looking forward to it so much.
Travis, Christine and the boys are planning a trip here the next week...again Brett is looking forward to fun with his side kick and soul mate Isak. Slip and slide, riding the motor scooter, going for a ride on the "double" also known as the tandem, and just playing as much as possible. He's looking forward to adding Fin to the mix this year since he will be "of age" to participate in all the fun!
After that.... we are hoping for another trip to "Mary Sue's beach house" for more beach fun and entertainment with the Stornant family to celebrate Mary Sue's birthday again.
July looks pretty full huh?
Now the question remains... since all of this will be happening before Brett's 100 days are up and most of his restrictions are lifted, will we be allowed to participate in it all? Do you take the risk of being exposed to all the people especially all the kids who seem to hoard all the little germs that could potentially harm Brett? When do you start to live again? When can we travel to a destination that is more than 1 hour from Karmanos? When can we just go and do whatever we want without worry? Isn't life better with family and friends around? Isn't it better to laugh and play and have "some enjoy"? Is life going to get back to normal soon enough to enjoy this summer and all the good times that are to be had?
I know if Brett gets his way we will be enjoying this summer, but we can't forget that his immune system is as delicate as a new baby right now. So,we'll hold up as long as we can without much to do with the outside world so we can enjoy the future summer plans with family and friends. We look forward to the fun!
peace, love and happiness until next time
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