It's been a long time since I've blogged. I'm sorry if anyone has been checking in on here and haven't found anything new. Our lives have been busy so keeping up on this has been very difficult
I actually don't know where to begin...
I guess i should just start out by saying everything has gone extremely well. Brett has had no side effects from this transplant. His strength is pretty much back to normal, he has his days where he's a little more tired than usual but for the most part everything is good
He has decreased his meds a lot...but is still taking some. The immunosuppresion drugs are minimal but he still dreads taking them
I guess the most important thing to tell you all is he's back to work!!
The best thing that has happened to him in a while. He said the first day was hard. A lot to remember and a little bit of a challenge. When I came home from work he was practically passed out on the couch. So tired he couldn't keep his eyes open or answer any questions. But day number 2 and 3 went a lot better. He's so happy to be back to living life like a normal adult.
I dont' have very much else exciting to report. We are just trying to get back to where our life was before this crazy bump in the road.
I'm so grateful we have gotten through this so well. I am blessed to be able to go to work and share a little bit of this good fortune with some of our patients. Lots of new patients recently who have the same type of leukemia as Brett. One young man (20 years old) who reminds me a lot of Brett. Brett's story is difficult to share because it's unusal and somewhat scarey to hear when you've been newly diagnosed. I am hesitant to share that Brett has had this disease 3 times ... who wants to know that part right?
What I am not hesitant to share is his miraculous progress and how he has proven attitude and determination will get you where you need to be. I have told the young man and his mom who I've become fond of, that you just need to fight, keep on with your life as much as you can. Don't let the nausea win, or the fatigue keep you in bed, or the lack of energy bring you down. Brett never complains, he never lets the lack of energy keep him from doing what he needs to do. I share stories with his mom and give her progress on what Brett is doing such a short time after transplant. The young man and Brett both had the a lumbar puncture procedure on the same day recently... the following day the young man was in the office and I went to check on how he was doing. The mom said he did better this time, but he's tired, and had a headache, etc She asked me how Brett did - I told her proudly he did great. When I got home from work he was out washing his car. The look on her face was priceless - she couldn't believe it. I just said "i told you, not much gets Brett down. He just keeps on going!"
I spoke with a wife of another patient who was having a terrible time after her husband was given his diagnosis. She was hysterical, and no one really knew what we should do... I decided to take the step and sit with her. I explained I knew how she was feeling, that I have been in her position - I literally had walked in her shoes. The first thing I knew to say was that "today is going to be the worst day. Believe me it will get easier." Hearing that your husband has cancer - well in short makes you feel like your heart has been riped out of your chest and all your hope, faith, courage and strength along with it. But each day after does get easier, until this "thing" that has invaded your life becomes just another task on your list for the day. You will find the strength and courage you need from the craziest places. And you will get through it!
I watch her help her husband each day they are in the office. She has taken control, she's not going to let this disease win. She pulled me aside the other day and said " you know I just want to tell you that what you told me about the first day was right, that was the worst day. Now it doesn't seem so bad"
Brett continues to amaze me each day. Even though he still doesn't want credit for doing anything special, he inspires more people than he'll ever know. He's strong and couragous...and I don't know where I'd be without him
peace, love and happiness until next time
Saturday, September 18, 2010
Thursday, July 1, 2010
day +65
Today was another great appointment, a long day in Detroit but it was all worth it.
Counts were all good and Brett's where he should be.
The hickman Cathater was removed today! It was a pretty simple procedure but very strange. They basically numb the area with a few shots then make small cuts until the cath is free, then they just pull it out of your chest. Brett said it didn't hurt but felt very strange. It freaks him out a little thinking they just leave this hole in your vein to close up on its own. He says it's a little sore but he's feeling good. No lifting or strainuous activity for 2 weeks... oh yeah and he convinced the nurse to write on the discharge script: "no dishes, no vacumming, no laundry. Patient cannot lift anything heavier than the television clicker. Patient needs shoulder massage every other day x 2 weeks" He's hilarious, huh?
He's been out riding, and rollerblading with his new skates. He's trying to keep himself busy but he's getting bored quickly. Can't blame him... only so much you can do out here in Mason .
We won't be heading north for the Stornant Family Camparama this year. We are pretty bummed out about it but the trip is too far and we just don't think it would be a good idea right now. We will miss everyone and we will pray for good weather and good times. Can't wait to hear about it.
Brett's biggest outing so far was to go to our niece Kera's graduation open house. We surprised many people by showing up and I think it really made Kera's day. It also made Brett feel good to see everyone and share in a little Stornant craziness. Nice to get back to a little normalcy.
We are hoping the the visit from Travis, Christine, Isak and Fin goes off without a hitch. They gave Brett the ok to have them visit as long as the kids are not sick. Brett's planning some fun with the kids... oh and Trav and Christine too. Hoping everyone stays healthy so we can enjoy some company!
I really don't have much more excitment to report so this is going to be another short post.
We'll keep you all posted on any further developments.
peace, love and happiness until next time
Counts were all good and Brett's where he should be.
The hickman Cathater was removed today! It was a pretty simple procedure but very strange. They basically numb the area with a few shots then make small cuts until the cath is free, then they just pull it out of your chest. Brett said it didn't hurt but felt very strange. It freaks him out a little thinking they just leave this hole in your vein to close up on its own. He says it's a little sore but he's feeling good. No lifting or strainuous activity for 2 weeks... oh yeah and he convinced the nurse to write on the discharge script: "no dishes, no vacumming, no laundry. Patient cannot lift anything heavier than the television clicker. Patient needs shoulder massage every other day x 2 weeks" He's hilarious, huh?
He's been out riding, and rollerblading with his new skates. He's trying to keep himself busy but he's getting bored quickly. Can't blame him... only so much you can do out here in Mason .
We won't be heading north for the Stornant Family Camparama this year. We are pretty bummed out about it but the trip is too far and we just don't think it would be a good idea right now. We will miss everyone and we will pray for good weather and good times. Can't wait to hear about it.
Brett's biggest outing so far was to go to our niece Kera's graduation open house. We surprised many people by showing up and I think it really made Kera's day. It also made Brett feel good to see everyone and share in a little Stornant craziness. Nice to get back to a little normalcy.
We are hoping the the visit from Travis, Christine, Isak and Fin goes off without a hitch. They gave Brett the ok to have them visit as long as the kids are not sick. Brett's planning some fun with the kids... oh and Trav and Christine too. Hoping everyone stays healthy so we can enjoy some company!
I really don't have much more excitment to report so this is going to be another short post.
We'll keep you all posted on any further developments.
peace, love and happiness until next time
Sunday, June 20, 2010
June 20....
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
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 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
Sunday, May 30, 2010
DAY +32
Day + 32 and all is well! Brett's appointment on Friday was another positive visit. Dr Uberti has nothing but good things to say and that Brett is ahead of schedule. Doing so well he cut him down to 1 visit a week in Detroit. The nurse replied to the doctor with shock, "are you sure" then told us when he left the room he never goes to once a week visits this soon.
HMMM I wonder, is the doctor favoring Brett or is he sick of us already? He has a good perspective of Brett from the few visits he had with him over the year prior to the transplant. I think I told you all before Brett had a VERY difficult time making the final decision to have this transplant. He was a stickler and challenged the doctors and the transplant coordinator in every way! I think Dr Williams (brett's oncologist here) gave Dr Uberti a pretty good picture of Brett's personality at the beginning of all of this. And Dr Uberti has stepped up to the challenge of taking Brett on head on! That's good for Brett, he needs to be challenged that's just how he works.
Dr Uberti may also have an inside scoop on how Brett works. His son is a fellow cyclist who Brett knows and has raced against a few times. Those of you who know a cyclist well enough know that they are a totally different breed. They all have a similar unique personality. It's very strange but true. A little addictive and somewhat controlling yes, but it seems to be a neccesity to be a good cyclist. They race with a team or sometimes alone. They wear a similar team jersey but might race a different type of bike because that's what they feel better on. They go on rides with others to train themselves to go faster and watch videos to get pointers on tactics but ride alone to fine tune their own techniques and riding style. They have to be able to work in a group and as an individual all at the same time.
Now about the once a week visit. At first I was so happy for Brett. See before we go to the appointment we come up with a plan... a plan of action. We have a list of a few things we are going to "present" then we come up with a scenario of what we or he will say depending on how the doctor responds. For example ... about being able to go home. We had it all planned out pretty much, we'd ask, give a little sob story, give some facts about needing good food not take out everyday, getting proper exercise, benefits of being in your own home etc etc
However when the doctor came in first thing he said was "where do you live again? we might as well get this out of the way I know you're gonna ask when you can go home."
Again this week was the same. Brett was ready and had a plan to talk the doctor into a once a week visit. But somehow Dr U got to the punch line first. He just blurted out after a short physical check up and a few questions... you can come back in a week. Brett was so excited I couldn't help but be happy too. But later couldnt' help thinking is this the right thing to ? Are we rushing things, is being ahead of schedule really that good?
Now I have to be more of a nag to make sure he's doing what needs to be done to stay on track. And to make sure he's not doing the things he's suppose to stay away from. I need to beef up the " did you take your pills" "time to walk" "you can't eat that" and the worst one "NO you can't mow the lawn" Yup that's the worst thing for him right now all he wants to do is mow
He's been arguing with me for the past few days, and coming up with every challenge "I'll wear a respirator" (yes we have one) "why can I go for a walk when the neighbors are mowing and breath in all the 'stuff' flying around but I can't mow myself"? I respond with "why take the risk" Why take the risk of getting sick when you've come this far just to mow the lawn." His response - "I just want to mow"
sounds like a simple request but he just can't do it, it's just too dangerous. I feel so bad because I know he just wants to get back to normal. Yes, he'd like to ride but it's easier for him to accept to wait on that because his energy level isn't where it needs to be. But to not do some of the simple things, that's getting harder and harder.
I have to remind myself it's ok to be a nag, it's ok to say NO. But it's so hard, his cyclist personality usually prevails...he takes what others suggest but he usually ends up doing it his own way. This has gotten him this far, this is probably why he's doing so well and is ahead of schedule, so how can you argue with him? He has amazed us all with his strength and perseverence, so what is one to do?
Dont' worry he wont' be mowing the lawn ... but I have a feeling that is just going to be the start. We are on our way to all new kinds of challenges...
peace love and happiness until next time
HMMM I wonder, is the doctor favoring Brett or is he sick of us already? He has a good perspective of Brett from the few visits he had with him over the year prior to the transplant. I think I told you all before Brett had a VERY difficult time making the final decision to have this transplant. He was a stickler and challenged the doctors and the transplant coordinator in every way! I think Dr Williams (brett's oncologist here) gave Dr Uberti a pretty good picture of Brett's personality at the beginning of all of this. And Dr Uberti has stepped up to the challenge of taking Brett on head on! That's good for Brett, he needs to be challenged that's just how he works.
Dr Uberti may also have an inside scoop on how Brett works. His son is a fellow cyclist who Brett knows and has raced against a few times. Those of you who know a cyclist well enough know that they are a totally different breed. They all have a similar unique personality. It's very strange but true. A little addictive and somewhat controlling yes, but it seems to be a neccesity to be a good cyclist. They race with a team or sometimes alone. They wear a similar team jersey but might race a different type of bike because that's what they feel better on. They go on rides with others to train themselves to go faster and watch videos to get pointers on tactics but ride alone to fine tune their own techniques and riding style. They have to be able to work in a group and as an individual all at the same time.
Now about the once a week visit. At first I was so happy for Brett. See before we go to the appointment we come up with a plan... a plan of action. We have a list of a few things we are going to "present" then we come up with a scenario of what we or he will say depending on how the doctor responds. For example ... about being able to go home. We had it all planned out pretty much, we'd ask, give a little sob story, give some facts about needing good food not take out everyday, getting proper exercise, benefits of being in your own home etc etc
However when the doctor came in first thing he said was "where do you live again? we might as well get this out of the way I know you're gonna ask when you can go home."
Again this week was the same. Brett was ready and had a plan to talk the doctor into a once a week visit. But somehow Dr U got to the punch line first. He just blurted out after a short physical check up and a few questions... you can come back in a week. Brett was so excited I couldn't help but be happy too. But later couldnt' help thinking is this the right thing to ? Are we rushing things, is being ahead of schedule really that good?
Now I have to be more of a nag to make sure he's doing what needs to be done to stay on track. And to make sure he's not doing the things he's suppose to stay away from. I need to beef up the " did you take your pills" "time to walk" "you can't eat that" and the worst one "NO you can't mow the lawn" Yup that's the worst thing for him right now all he wants to do is mow
He's been arguing with me for the past few days, and coming up with every challenge "I'll wear a respirator" (yes we have one) "why can I go for a walk when the neighbors are mowing and breath in all the 'stuff' flying around but I can't mow myself"? I respond with "why take the risk" Why take the risk of getting sick when you've come this far just to mow the lawn." His response - "I just want to mow"
sounds like a simple request but he just can't do it, it's just too dangerous. I feel so bad because I know he just wants to get back to normal. Yes, he'd like to ride but it's easier for him to accept to wait on that because his energy level isn't where it needs to be. But to not do some of the simple things, that's getting harder and harder.
I have to remind myself it's ok to be a nag, it's ok to say NO. But it's so hard, his cyclist personality usually prevails...he takes what others suggest but he usually ends up doing it his own way. This has gotten him this far, this is probably why he's doing so well and is ahead of schedule, so how can you argue with him? He has amazed us all with his strength and perseverence, so what is one to do?
Dont' worry he wont' be mowing the lawn ... but I have a feeling that is just going to be the start. We are on our way to all new kinds of challenges...
peace love and happiness until next time
Saturday, May 22, 2010
DAY+25
Well, today is day +25... i think, the days are getting away from me!
Friday's appointment with Dr Uberti was all we hoped for. Brett got the big OK to head home! And needless to say we were out of there as quickly as we could.
We arrived in Mason around 5:30 Friday night to a huge sign hung on the garage door - WELCOME HOME BRETT, from my sister and her kids. That was the best sign we've ever seen! And to walk into this house together was even better than when we moved in. We had pasta for dinner that was cooked on our own stove, and served in our own bowls. And the bed... wow what a feeling to crawl in to that bed with Brett next to me.
I was home for a few nights by myself. Last Sunday night I headed home alone so that I could go back to work for a few days. It wasn't easy but I did it. Work was a good reality check. Finally, a little be of normalcy to make me remember that life does go on.
Jim and Sherry stayed with Brett at the hotel until Thursday night when I returned to take over. Brett is still not able to be left alone so we made sure the transition of caregivers went without laps of time. We woke Friday morning and made the decision that we were going to be as positive as we could and pack up! Of course I was concerned that we were going to be jinxing ourselves but Brett was confident that this was the best plan. If he got the ok he was going to be out of there and quick! Can you blame the guy? The hotel was nice and the walks thru Birmingham neighborhoods he was able to take (twice a day, way to go Brett) were a nice change of pace from the hospital. But he wanted to go back home where he could do his own thing.
The appointment was good, besides the fact that we got the OK to go home! His counts are doing what they expect. WBC are a little lower so they are tapering one of his immuno-suppressant drugs to twice a day. Which he likes! Less pills to remember to take. BUT he was given orders to give himself the dreaded neupogen shot. I don't know if I ever mentioned the issues Brett has had in the past with this medication that is used to boost your white cells. The shot itself is no big deal... but the side effects that Brett experiences are not ones we'd like to relive. In short, bone pain so severe that he was put on a morphine pump during his chemo treatments here in Lansing. So far he's tolerating the shot just fine and thank goodness they only want him to take one shot to give a quick boost to those cells. The less of the medication the better the chances are that he will get through it without any problems.
I can't describe to you all how well Brett's doing. His energy level and appetite are coming back slow but sure. His walk has more purpose these days, the sluggishness is slowing disappearing.
He just keeps amazing me.
I told him how everyone keeps saying how proud they are of him. He just responds with why? He doesn't understand what there is to be proud of. "Isn't this what everyone does when faced with this?" ummmmm ....NO...
Today I talked with his nurse Patty (she's also my boss and a wonderful friend!)and she said the same... she's so proud of him. She also said Brett just doesn't understand how some of us, when faced with all that he's been through, would not be able to dig in as deep and fight like he has. She's right, she and I have both seen other people given this diagnosis and just fall apart. Now, don't get me wrong this has been a long, hard fright for Brett that I know he would have liked to have said "screw this" and just not do anything. But he found his strength and courage and he fought.
The fight is still on... Brett's battle continues... there are still many days ahead that are uncertain... many more appointments to go to... many more pills to take... but I know he can do it. I have faith in him.
He has so many prayers being said... so much love being sent... so many people wanting to help (thank you everyone)... so many cards with words of encouragement...so much medical technology available, that he has no choice but to go on and win!
peace, love and happiness until my next post
Friday's appointment with Dr Uberti was all we hoped for. Brett got the big OK to head home! And needless to say we were out of there as quickly as we could.
We arrived in Mason around 5:30 Friday night to a huge sign hung on the garage door - WELCOME HOME BRETT, from my sister and her kids. That was the best sign we've ever seen! And to walk into this house together was even better than when we moved in. We had pasta for dinner that was cooked on our own stove, and served in our own bowls. And the bed... wow what a feeling to crawl in to that bed with Brett next to me.
I was home for a few nights by myself. Last Sunday night I headed home alone so that I could go back to work for a few days. It wasn't easy but I did it. Work was a good reality check. Finally, a little be of normalcy to make me remember that life does go on.
Jim and Sherry stayed with Brett at the hotel until Thursday night when I returned to take over. Brett is still not able to be left alone so we made sure the transition of caregivers went without laps of time. We woke Friday morning and made the decision that we were going to be as positive as we could and pack up! Of course I was concerned that we were going to be jinxing ourselves but Brett was confident that this was the best plan. If he got the ok he was going to be out of there and quick! Can you blame the guy? The hotel was nice and the walks thru Birmingham neighborhoods he was able to take (twice a day, way to go Brett) were a nice change of pace from the hospital. But he wanted to go back home where he could do his own thing.
The appointment was good, besides the fact that we got the OK to go home! His counts are doing what they expect. WBC are a little lower so they are tapering one of his immuno-suppressant drugs to twice a day. Which he likes! Less pills to remember to take. BUT he was given orders to give himself the dreaded neupogen shot. I don't know if I ever mentioned the issues Brett has had in the past with this medication that is used to boost your white cells. The shot itself is no big deal... but the side effects that Brett experiences are not ones we'd like to relive. In short, bone pain so severe that he was put on a morphine pump during his chemo treatments here in Lansing. So far he's tolerating the shot just fine and thank goodness they only want him to take one shot to give a quick boost to those cells. The less of the medication the better the chances are that he will get through it without any problems.
I can't describe to you all how well Brett's doing. His energy level and appetite are coming back slow but sure. His walk has more purpose these days, the sluggishness is slowing disappearing.
He just keeps amazing me.
I told him how everyone keeps saying how proud they are of him. He just responds with why? He doesn't understand what there is to be proud of. "Isn't this what everyone does when faced with this?" ummmmm ....NO...
Today I talked with his nurse Patty (she's also my boss and a wonderful friend!)and she said the same... she's so proud of him. She also said Brett just doesn't understand how some of us, when faced with all that he's been through, would not be able to dig in as deep and fight like he has. She's right, she and I have both seen other people given this diagnosis and just fall apart. Now, don't get me wrong this has been a long, hard fright for Brett that I know he would have liked to have said "screw this" and just not do anything. But he found his strength and courage and he fought.
The fight is still on... Brett's battle continues... there are still many days ahead that are uncertain... many more appointments to go to... many more pills to take... but I know he can do it. I have faith in him.
He has so many prayers being said... so much love being sent... so many people wanting to help (thank you everyone)... so many cards with words of encouragement...so much medical technology available, that he has no choice but to go on and win!
peace, love and happiness until my next post
Sunday, May 16, 2010
Hi everyone
I have to apologize for not posting sooner but Brett got sprung and we've been on the move ever since Wednesday. Brett's doing well. Everything is going as expected. He's really tired and the energy just isn't there yet. I think that is the hardest part for him.
He had an apointment last Friday and he checked out just fine. We were hoping they would give him clearance to go home but they didn't feel comfortable doing that yet. Se we've been in hotels around Detroit. Today we moved to a hotel in Birmingham. This hotel is close to where Jim and Sherry have been staying.
The saddest part for me today was I left Brett to come home so I can go to work tomorrow. Jim and Sherry will be staying with him since he can't be left alone yet. He's far too weak and can't drive so someone has to be with him all the time in case something happens. We are not anticipating any problems but the doctors say that anything can happen and it can happen quickly. So Jim is going to be spending the nights with Brett at the hotel. I will return to Detroit on Thursday night after work so I can go to his appointment on Friday.
It's going to be very difficult to be away from him. It was hard to walk away from him today even though I was leaving him with his parents. I just hate the thought of not being able to witness for myself that he's really ok. I have threatened to call at all hours to make sure he's taking his meds, or that he took his temperature or that he's drinking enough.
My Stornant worry trait is in full swing. If there's one thing that's true it's we Stornants know how to worry. So once again I'll put my faith in God's hands and trust He will keep Brett safe and healthy until I can get back to him.
I will try to post as often as I can but it probably won't be every day. I will be sure to post when and if there are changes.
So . . . .
Peace, love and happiness
I have to apologize for not posting sooner but Brett got sprung and we've been on the move ever since Wednesday. Brett's doing well. Everything is going as expected. He's really tired and the energy just isn't there yet. I think that is the hardest part for him.
He had an apointment last Friday and he checked out just fine. We were hoping they would give him clearance to go home but they didn't feel comfortable doing that yet. Se we've been in hotels around Detroit. Today we moved to a hotel in Birmingham. This hotel is close to where Jim and Sherry have been staying.
The saddest part for me today was I left Brett to come home so I can go to work tomorrow. Jim and Sherry will be staying with him since he can't be left alone yet. He's far too weak and can't drive so someone has to be with him all the time in case something happens. We are not anticipating any problems but the doctors say that anything can happen and it can happen quickly. So Jim is going to be spending the nights with Brett at the hotel. I will return to Detroit on Thursday night after work so I can go to his appointment on Friday.
It's going to be very difficult to be away from him. It was hard to walk away from him today even though I was leaving him with his parents. I just hate the thought of not being able to witness for myself that he's really ok. I have threatened to call at all hours to make sure he's taking his meds, or that he took his temperature or that he's drinking enough.
My Stornant worry trait is in full swing. If there's one thing that's true it's we Stornants know how to worry. So once again I'll put my faith in God's hands and trust He will keep Brett safe and healthy until I can get back to him.
I will try to post as often as I can but it probably won't be every day. I will be sure to post when and if there are changes.
So . . . .
Peace, love and happiness
Wednesday, May 12, 2010
Day +15
This is Amy Jo's sister, Claudia, posting for her tonight. She is very tired , so she asked me to post for her.
They had a very long and hectic day. But, they are all settled into a very nice Holiday Inn Express in Allen Park. The hotel is about 9 miles from the hospital. She went to Meijer, across the street, and got some food for their room. She is looking forward to a good sleep in the very comfy bed. I am sure Brett is too.
Amy Jo reports, "Brett is doing really good. Tired but very happy to be free from the hospital."
I am sure she will resume her posts soon.
love and prayers for Brett and Amy Jo
This is Amy Jo's sister, Claudia, posting for her tonight. She is very tired , so she asked me to post for her.
They had a very long and hectic day. But, they are all settled into a very nice Holiday Inn Express in Allen Park. The hotel is about 9 miles from the hospital. She went to Meijer, across the street, and got some food for their room. She is looking forward to a good sleep in the very comfy bed. I am sure Brett is too.
Amy Jo reports, "Brett is doing really good. Tired but very happy to be free from the hospital."
I am sure she will resume her posts soon.
love and prayers for Brett and Amy Jo
Monday, May 10, 2010
DAY +13
Opps... just tried to post the day without writing anything.
It was another day of progress! Lots of walking, some more eating (stef he started the day with a piece of pound cake!) Down to 2 IV bags... one of which will end at 10pm tonight leaving only fluids running!
He's doing amazing. So well in fact, the doctors are talking about discharging him in the next few days. There they are again, those words "few days". I'm not going to lie... I'm a little nervous. I need to be heading back to work soon and they are talking about having him stay in guest housing here near the hospital.
He sent me over to scope out the place today. It really wasn't bad, it's just a plan old hotel room pretty much. A bed, at recliner, a tv, small fridge, microwave...and that's it. I know it's going to be so hard for him to stay in a "room" like that and try to heal. But they want him within an hour of the hospital in case something were to happen and he has an emergency. Our house is about 1 hour and 20 minutes away.
He will be making trips to the clinic here probably 2 -3 times a week. And if he develops a fever or anything he has to come here to the ER because if he goes to a regular hospital we're told they pretty much won't know what to do with him. Not very many hospitals know that much about transplant patients I guess.
How am I suppose to leave him? What if something happens in the night and he's alone? Now, Jim and Sherry will be staying close... about 40 minutes away and that helps a little but it's not the same as me being here with him. And the "room" is so small and blah... how is someone suppose to get better sitting in a one room "room" all day? He can go outside, and there is a nice park area right by the housing building but still. Come on hospital people think about it. Is that a healthy environment to be in when you are trying to heal from a major thing like bone marrow transplant?
We're gonna do whatever they think is best but we are hoping they will bend the rules for him and let him go home. I know that being home will do wonders for him. He needs to be in the right frame of mind to continue to progress as well as he has been. It will all work out, it's just one small hurdle to jump on this crazy adventure.
I guess I just wasn't really thinking it was going to happen as quickly as it is. I should just be happy that he's moving to the next phase.
I'll let you know how things work out tomorrow.
OH Thanks for the cards and pictures that keep coming! He loves them... and Christine and Trav, yes he'd like to order a larger size of that photo of the two of you!!! poster size would be good
peace, love and happiness until tomorrow
It was another day of progress! Lots of walking, some more eating (stef he started the day with a piece of pound cake!) Down to 2 IV bags... one of which will end at 10pm tonight leaving only fluids running!
He's doing amazing. So well in fact, the doctors are talking about discharging him in the next few days. There they are again, those words "few days". I'm not going to lie... I'm a little nervous. I need to be heading back to work soon and they are talking about having him stay in guest housing here near the hospital.
He sent me over to scope out the place today. It really wasn't bad, it's just a plan old hotel room pretty much. A bed, at recliner, a tv, small fridge, microwave...and that's it. I know it's going to be so hard for him to stay in a "room" like that and try to heal. But they want him within an hour of the hospital in case something were to happen and he has an emergency. Our house is about 1 hour and 20 minutes away.
He will be making trips to the clinic here probably 2 -3 times a week. And if he develops a fever or anything he has to come here to the ER because if he goes to a regular hospital we're told they pretty much won't know what to do with him. Not very many hospitals know that much about transplant patients I guess.
How am I suppose to leave him? What if something happens in the night and he's alone? Now, Jim and Sherry will be staying close... about 40 minutes away and that helps a little but it's not the same as me being here with him. And the "room" is so small and blah... how is someone suppose to get better sitting in a one room "room" all day? He can go outside, and there is a nice park area right by the housing building but still. Come on hospital people think about it. Is that a healthy environment to be in when you are trying to heal from a major thing like bone marrow transplant?
We're gonna do whatever they think is best but we are hoping they will bend the rules for him and let him go home. I know that being home will do wonders for him. He needs to be in the right frame of mind to continue to progress as well as he has been. It will all work out, it's just one small hurdle to jump on this crazy adventure.
I guess I just wasn't really thinking it was going to happen as quickly as it is. I should just be happy that he's moving to the next phase.
I'll let you know how things work out tomorrow.
OH Thanks for the cards and pictures that keep coming! He loves them... and Christine and Trav, yes he'd like to order a larger size of that photo of the two of you!!! poster size would be good
peace, love and happiness until tomorrow
Sunday, May 9, 2010
DAY +12
Today was a good day. Counts up to 2.5, IV meds being switched to pill form or discontinued totally. He ate!! a whole piece of french toast, a few graham crackers and pudding, and string cheese. GREAT PROGRESS!!!
He's in good spirits today. He's making me laugh with funny comments all day. He's getting his strength back a little more everyday and he's increasing his walking laps each day.
Today was beautiful outside, I just wish he could get out there and enjoy it! or as my nephew Sam would say "have some enjoy!" But for now we will soak in the rays as they come in the window - even though he told me it was too bright and he needed it closed a little.
Sorry so little to say today... but no news is good news right?
peace, love and happiness until tomorrow!
He's in good spirits today. He's making me laugh with funny comments all day. He's getting his strength back a little more everyday and he's increasing his walking laps each day.
Today was beautiful outside, I just wish he could get out there and enjoy it! or as my nephew Sam would say "have some enjoy!" But for now we will soak in the rays as they come in the window - even though he told me it was too bright and he needed it closed a little.
Sorry so little to say today... but no news is good news right?
peace, love and happiness until tomorrow!
Saturday, May 8, 2010
DAY +11
It's early yet and Brett is still sleeping. He had a long uncomfortable night. Achy, can't regulate his own body temp he's either boiling hot or freezing cold but no temperature. Stomach is still bothering him ...but the nurse said this morning it's all normal and signs of engraftment!!
WBC today is 2.2!!! Don't know if I ever wrote that 3.5- 10.0 is normal range for a healthy WBC count. Brett normally runs on the low end of the range ... so we'll see how it looks after engraftment.
He did great yesterday, walked 5 laps and stayed awake for most of the day trying to figure out what to do with himself. He had a few bites of jello - orange which I don't think is his favorite flavor, and a few sips of water. He wants to do so much but just doesn't really have the energy. I can't wait for that to kick in! He requested that they take away the morphine pump last night one less thing to depend on. He's being so tough and is trying to get everything back to normal again.
Today we try more walking...and more talking and maybe a little more eating and drinking.
The sooner the better... the quicker he's eating, and the quicker he's on pill forms of all his current IV medications the quicker he gets released from this place.
Mind you this place has been great to him ... But home ahhhh that's where he wants to be. Home is the comfort looking out the windows and seeing trees and birds instead of brick buildings, it's the comfort sitting on the deck in the warm sunshine soaking in some vitamin D, it's the comfort of your own towels and blankets and your own bed! It's being able to walk the outside on the beautiful property instead of walking the hospital floors. It's being able have all your stuff not just a bag of the necessities. It's the comfort of eating what you want not what they are serving for the day (all if which does not please the pallet). It's having your bikes - even if you can't ride them yet, but you know they are there when you're ready.
..... there's just no place like home!
peace, love and happiness until tomorrow!
WBC today is 2.2!!! Don't know if I ever wrote that 3.5- 10.0 is normal range for a healthy WBC count. Brett normally runs on the low end of the range ... so we'll see how it looks after engraftment.
He did great yesterday, walked 5 laps and stayed awake for most of the day trying to figure out what to do with himself. He had a few bites of jello - orange which I don't think is his favorite flavor, and a few sips of water. He wants to do so much but just doesn't really have the energy. I can't wait for that to kick in! He requested that they take away the morphine pump last night one less thing to depend on. He's being so tough and is trying to get everything back to normal again.
Today we try more walking...and more talking and maybe a little more eating and drinking.
The sooner the better... the quicker he's eating, and the quicker he's on pill forms of all his current IV medications the quicker he gets released from this place.
Mind you this place has been great to him ... But home ahhhh that's where he wants to be. Home is the comfort looking out the windows and seeing trees and birds instead of brick buildings, it's the comfort sitting on the deck in the warm sunshine soaking in some vitamin D, it's the comfort of your own towels and blankets and your own bed! It's being able to walk the outside on the beautiful property instead of walking the hospital floors. It's being able have all your stuff not just a bag of the necessities. It's the comfort of eating what you want not what they are serving for the day (all if which does not please the pallet). It's having your bikes - even if you can't ride them yet, but you know they are there when you're ready.
..... there's just no place like home!
peace, love and happiness until tomorrow!
Friday, May 7, 2010
DAYS +9 AND +10
Sorry no post last night...
since i didn't post yesterday I thought I'd post early today.
Brett seems to be right on schedule. His White Blood Counts (from now on I'm using WBC) are coming in! Yesterday they were up a little from 0.1 to 0.4... today though, just like predicted 1.0!
This is good news and a sign that everything is working as it should. This mucositis should soon be healing up!!! Just a few more days!! I think today he feels a little better - still kind of early to tell.
Yesterday he made a few laps around the unit which has now proven to us all that he's stronger than he feels. No more getting out of that daily walk they require here. Today we're looking for 10 laps. We'll see! My Dad told me last night "if you could just get his bike up there you'd have no problems!" SO TRUE!!
peace, love and happiness until tomorrow (or later tonight if I have anything to report)
since i didn't post yesterday I thought I'd post early today.
Brett seems to be right on schedule. His White Blood Counts (from now on I'm using WBC) are coming in! Yesterday they were up a little from 0.1 to 0.4... today though, just like predicted 1.0!
This is good news and a sign that everything is working as it should. This mucositis should soon be healing up!!! Just a few more days!! I think today he feels a little better - still kind of early to tell.
Yesterday he made a few laps around the unit which has now proven to us all that he's stronger than he feels. No more getting out of that daily walk they require here. Today we're looking for 10 laps. We'll see! My Dad told me last night "if you could just get his bike up there you'd have no problems!" SO TRUE!!
peace, love and happiness until tomorrow (or later tonight if I have anything to report)
Wednesday, May 5, 2010
DAY +8
Another day of improvement! Sitting up, showering, a few giggles here and there, a few comments to give the nurses a hard time. Things are lookin' up.
Mouth and throat seem to be even better today. He's really weak but trying his best to work through it. His platelets were down today so he had to have a transfusion. That went without incident.
Doctors are all encouraging him and telling him how well he's doing. He's on track and hopefully day +10 will show first signs of increasing white cells. So we are holding on for a few more days. He's been discouraged with those words...a few more days. He says everyone keeps saying that and a few more days haven't shown anything new. Well he's forgetting that a few days ago he wasn't doing anything except sleeping, and a few days before that he was vomiting all the time. So I'm going to believe it when they say a few more days, things will be better because I'm witnessing the improvement from a different side. Not from the patient side, or the doctor side but the wife side. The side that hurts when he hurts and will try anything to comfort him. The side that wishes I could just take all of this away from him somehow. The side that will stand by him through better or worse through sickness and in health...
We will find the strength to take each day as it comes because we have so much support, we have the miracle of medicine, and we have the power and grace of prayer. So give me a few more days and we'll see what happens!!!
peace, love and happiness until tomorrow
Mouth and throat seem to be even better today. He's really weak but trying his best to work through it. His platelets were down today so he had to have a transfusion. That went without incident.
Doctors are all encouraging him and telling him how well he's doing. He's on track and hopefully day +10 will show first signs of increasing white cells. So we are holding on for a few more days. He's been discouraged with those words...a few more days. He says everyone keeps saying that and a few more days haven't shown anything new. Well he's forgetting that a few days ago he wasn't doing anything except sleeping, and a few days before that he was vomiting all the time. So I'm going to believe it when they say a few more days, things will be better because I'm witnessing the improvement from a different side. Not from the patient side, or the doctor side but the wife side. The side that hurts when he hurts and will try anything to comfort him. The side that wishes I could just take all of this away from him somehow. The side that will stand by him through better or worse through sickness and in health...
We will find the strength to take each day as it comes because we have so much support, we have the miracle of medicine, and we have the power and grace of prayer. So give me a few more days and we'll see what happens!!!
peace, love and happiness until tomorrow
Tuesday, May 4, 2010
DAY+7
Today was a pretty good day
The swelling in Brett's mouth seems to have gone down considerably, thanks to the steroid they decided to start giving him. They will only give him 4 doses because they don't want it to interupt any of the engrafting. But we will take any help at this point in getting Brett more comfortable.
The neupogen shots started last night and went fine so far. I don't remember if I explained what neupogen is... basically is a growth factor to stimulate the bone marrow to produce white blood cells. When he got these shots during his treatment before coming here he would develop extreme bone pain. So bad I don't even want to talk about it. Needless to say we were a little nervous that he may have some of the same pain during these shots. Well, the doctors are not concerned at all about this happening now since the shots will be stimulating Tyler's new cells not Brett's old ones. AMAZING!!! He's due for his 2nd shot anytime so again i need to get back quick
He's being flooded with cards and thank goodness as it's the only thing that he is agreeing to do. Whenever i ask if he wants to read, listen to music or watch tv etc... the answer is usually no. (well the music has been yes a few times) Today when I asked do you want to open your cards... he reached out and grabbed them from me! And he's getting some good ones!! And he's getting them from people he doesn't even know. People are great.
THANK YOU!!
Those who have sent emails... he still hasn't checked those yet, maybe tomorrow that will be the one new thing we add to the day.
Gotta run
peace, love and happiness until tomorrow
The swelling in Brett's mouth seems to have gone down considerably, thanks to the steroid they decided to start giving him. They will only give him 4 doses because they don't want it to interupt any of the engrafting. But we will take any help at this point in getting Brett more comfortable.
The neupogen shots started last night and went fine so far. I don't remember if I explained what neupogen is... basically is a growth factor to stimulate the bone marrow to produce white blood cells. When he got these shots during his treatment before coming here he would develop extreme bone pain. So bad I don't even want to talk about it. Needless to say we were a little nervous that he may have some of the same pain during these shots. Well, the doctors are not concerned at all about this happening now since the shots will be stimulating Tyler's new cells not Brett's old ones. AMAZING!!! He's due for his 2nd shot anytime so again i need to get back quick
He's being flooded with cards and thank goodness as it's the only thing that he is agreeing to do. Whenever i ask if he wants to read, listen to music or watch tv etc... the answer is usually no. (well the music has been yes a few times) Today when I asked do you want to open your cards... he reached out and grabbed them from me! And he's getting some good ones!! And he's getting them from people he doesn't even know. People are great.
THANK YOU!!
Those who have sent emails... he still hasn't checked those yet, maybe tomorrow that will be the one new thing we add to the day.
Gotta run
peace, love and happiness until tomorrow
Monday, May 3, 2010
DAY +6
Hello everyone...
today's pretty much the same as yesterday. Not much to report from room 10210. Shots don't start until tonight- why they give them in the evening I have yet to find out. Waiting for doctor to round today, hopefully we get some of this straightened out and get Brett feeling better
Since I'm lost for words today...I've decided to put in a poem that when I heard for the first time during the movie of the same name, it brought me to tears. The movie was a little slow...but the poem speaks volumes. It fits Brett almost too perfectly.
Ivictus
Out of the night that covers me,
black as the Pit from pole to pole,
I thank whatever gods may be
for my unconquerable soul
In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
my head is bloody, but unbowed.
Beyond the place of wrath and tears
looms but the horror of the shade,
and yet the menace of the years
finds, and shall find, me unafraid
It matters not how strait the gate,
how charged with punishments the scroll
I am the master of my fate;
I am the captain of my soul
by william ernest henley
peace love and happiness until tomorrow
today's pretty much the same as yesterday. Not much to report from room 10210. Shots don't start until tonight- why they give them in the evening I have yet to find out. Waiting for doctor to round today, hopefully we get some of this straightened out and get Brett feeling better
Since I'm lost for words today...I've decided to put in a poem that when I heard for the first time during the movie of the same name, it brought me to tears. The movie was a little slow...but the poem speaks volumes. It fits Brett almost too perfectly.
Ivictus
Out of the night that covers me,
black as the Pit from pole to pole,
I thank whatever gods may be
for my unconquerable soul
In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
my head is bloody, but unbowed.
Beyond the place of wrath and tears
looms but the horror of the shade,
and yet the menace of the years
finds, and shall find, me unafraid
It matters not how strait the gate,
how charged with punishments the scroll
I am the master of my fate;
I am the captain of my soul
by william ernest henley
peace love and happiness until tomorrow
Sunday, May 2, 2010
day +4 and +5
Sorry I didn't blog last night. It's been a long few days. Today's blog is going to be a little short too. Don't like to be out of the room too long right now
Brett's doing ok. As well as can be expected. He still has terrible throat and mouth pain. In addition to that his gut hurts really bad too. All normal, all expected. Just extremely uncomfortable. They have now put him back on the ativan since he got sick 1 time last night. This is good, because this seems to relax him and helps the stomach cramps! He seems a little more comfortable but still is struggling.
I want to thank everyone for their support... all the emails and texts have helped so much. This is really a tough time for me. It's getting harder to see him struggle with all this since he usually rebounds so quickly. I know he's ok... and he's in good hands here but all of your prayers, love and support is what we really need!!
I will post again tomorrow. He's suppose to start the neupogen shots tomorrow to boost Tyler's stem cells! So I'm looking at tomorrow as a new day, one full of healing and one full of great hope!!!
peace, love and happiness until tomorrow
Brett's doing ok. As well as can be expected. He still has terrible throat and mouth pain. In addition to that his gut hurts really bad too. All normal, all expected. Just extremely uncomfortable. They have now put him back on the ativan since he got sick 1 time last night. This is good, because this seems to relax him and helps the stomach cramps! He seems a little more comfortable but still is struggling.
I want to thank everyone for their support... all the emails and texts have helped so much. This is really a tough time for me. It's getting harder to see him struggle with all this since he usually rebounds so quickly. I know he's ok... and he's in good hands here but all of your prayers, love and support is what we really need!!
I will post again tomorrow. He's suppose to start the neupogen shots tomorrow to boost Tyler's stem cells! So I'm looking at tomorrow as a new day, one full of healing and one full of great hope!!!
peace, love and happiness until tomorrow
Friday, April 30, 2010
DAY+3
I wish I had something good to tell everyone tonight...but pretty much today was the same as yesterday. Brett's throat is really hurting today, and it's been told to us many times that it's going to get worse before it gets better. He's on morphine now because the pain is pretty bad and he's doesn't want to swallow. You'd think somewhere in the wide world of medicine they'd have treatment for this mucositis but all they can do is try to control the pain. So that's what we're trying to do... get the pain undercontrol
Other than that his counts are still going down, we are counting the days until we see the first increase in them and the first sign of engrafment. That will be a great day!
Brett's also not talking a lot, and if you've sent an email ...he hasn't even checked that in days. I'm trying read his mind and figure out what he's thinking. I want him to be in the best frame of mind he can be in right now. I know the emails would be great for him to read because I know you are all sending best wishes and encouragement. So that will be my mission for tomorrow.
Time to get back to the room.
peace, love and happiness until tomorrow!
Other than that his counts are still going down, we are counting the days until we see the first increase in them and the first sign of engrafment. That will be a great day!
Brett's also not talking a lot, and if you've sent an email ...he hasn't even checked that in days. I'm trying read his mind and figure out what he's thinking. I want him to be in the best frame of mind he can be in right now. I know the emails would be great for him to read because I know you are all sending best wishes and encouragement. So that will be my mission for tomorrow.
Time to get back to the room.
peace, love and happiness until tomorrow!
Thursday, April 29, 2010
DAY +2
Day + 2 and things are good.
I want to start by thanking Kim and Claudia for posting the photos for me. I couldn't do it from here so they helped me out. Sorry they are so small but I took them with my cell phone.
Today the challenge of walking 10 laps around the unit was met!!! Thank goodness. He did it... and half of it without persuasion. He's so tired and weak that he'd really like to just stay in bed. Of course we cannot let that happen. We know the more he lays in bed and does not get exercise the weaker he's going to get. His white blood cells are pretty much non-existent now, so he's extremely susceptible to so much that he needs to really be careful. The exercising is going to make him stronger so he can fight off whatever illness might try to invade his body...and moving around helps the new cells move and will encourage the en-graftment. So basically we've been really trying to encourage him to get moving. Was it my nagging or was it the very cute young nurse telling him she had confidence that he could get 10 laps in today????
The mucositis in his mouth (it's like thrush) is starting to take over so he really doesn't want to even swallow sometimes. Eating is really tough, so he's drinking Ensure right now. Unfortunately, they keep telling us this is going to continue to get worse until his counts go up...so we're looking at 8 to 12 more days of mucositis. DANG!
I'm so proud of him. His physical strength is low but his spirit is high! He has so much courage that he continues to amaze me all the time. He's a true inspiration!!
peace, love and happiness until tomorrow
I want to start by thanking Kim and Claudia for posting the photos for me. I couldn't do it from here so they helped me out. Sorry they are so small but I took them with my cell phone.
Today the challenge of walking 10 laps around the unit was met!!! Thank goodness. He did it... and half of it without persuasion. He's so tired and weak that he'd really like to just stay in bed. Of course we cannot let that happen. We know the more he lays in bed and does not get exercise the weaker he's going to get. His white blood cells are pretty much non-existent now, so he's extremely susceptible to so much that he needs to really be careful. The exercising is going to make him stronger so he can fight off whatever illness might try to invade his body...and moving around helps the new cells move and will encourage the en-graftment. So basically we've been really trying to encourage him to get moving. Was it my nagging or was it the very cute young nurse telling him she had confidence that he could get 10 laps in today????
The mucositis in his mouth (it's like thrush) is starting to take over so he really doesn't want to even swallow sometimes. Eating is really tough, so he's drinking Ensure right now. Unfortunately, they keep telling us this is going to continue to get worse until his counts go up...so we're looking at 8 to 12 more days of mucositis. DANG!
I'm so proud of him. His physical strength is low but his spirit is high! He has so much courage that he continues to amaze me all the time. He's a true inspiration!!
peace, love and happiness until tomorrow
Wednesday, April 28, 2010
Transplant in photos...
First day here...already planning escape.
Last trip to radiation.
Getting chemo Saturday before transplant.
Red bag is filled with Tyler's stem cells.
Machine taking out the blood and spinning out the cells.
Tyler giving the "goods."
Bag of Tyler's stem cells.
Brett getting stem cells.
Mission complete!DAY +1
Wednesday, Day +1 in this adventure.
All is going well. Brett is doing really good...feeling tired and weak still from the chemo. Lightheaded when he stands up so getting him to walk around or sit in a chair is a little bit of a challenge. But his spirits are pretty good. He's making jokes when he's awake and giving the nurses a hard time.
It's going to be a long road until he gets his energy back and it breaks my heart alittle bit everytime he looks at me with those blue eyes ... almost as if he's asking me to get him out of here.
So today I've decided I have to get tough. He needs to get out of here and back on that bike as soon as possible! He seems to be giving in a little bit to this weakness and I dont' feel good thing. Not that I can blame him... trust me he has reason to be feeling crappy. But it's just not like him not to have a little more fight. So I'm gonna do some of the fighting for him. He jokingly said he was going to kick me out of the room when I was nagging him too much about going for a walk. But I'm not scared.. I think I can take him!
Everything else is good. Jim and Sherry were here again today. OH Sherry was concerned that you all thought that they abandoned Brett yesterday during the transplant because I didn't mention them in my posting. I figured you all would just know that they were here too... but just in case I thought I'd better clear the air.
Our sister in law Christine sent me an email today about a conversation she had with our nephew Isak. Isak and Brett seem to have a very special bond. When they are together you can't seem to tear them apart. I that I thought I'd share the email...she wrote
" I was telling Isak about Brett tonight and I said 'Uncle Brett is sick, he's in the hospital' He had a sad look on his face so I said 'but Uncle Tyler helped him today by giving him new blood to make him better'. He got all excited and said ' can I do that too?'
The giving must run in the genes!!!
peace, love and happiness until tomorrow!!
All is going well. Brett is doing really good...feeling tired and weak still from the chemo. Lightheaded when he stands up so getting him to walk around or sit in a chair is a little bit of a challenge. But his spirits are pretty good. He's making jokes when he's awake and giving the nurses a hard time.
It's going to be a long road until he gets his energy back and it breaks my heart alittle bit everytime he looks at me with those blue eyes ... almost as if he's asking me to get him out of here.
So today I've decided I have to get tough. He needs to get out of here and back on that bike as soon as possible! He seems to be giving in a little bit to this weakness and I dont' feel good thing. Not that I can blame him... trust me he has reason to be feeling crappy. But it's just not like him not to have a little more fight. So I'm gonna do some of the fighting for him. He jokingly said he was going to kick me out of the room when I was nagging him too much about going for a walk. But I'm not scared.. I think I can take him!
Everything else is good. Jim and Sherry were here again today. OH Sherry was concerned that you all thought that they abandoned Brett yesterday during the transplant because I didn't mention them in my posting. I figured you all would just know that they were here too... but just in case I thought I'd better clear the air.
Our sister in law Christine sent me an email today about a conversation she had with our nephew Isak. Isak and Brett seem to have a very special bond. When they are together you can't seem to tear them apart. I that I thought I'd share the email...she wrote
" I was telling Isak about Brett tonight and I said 'Uncle Brett is sick, he's in the hospital' He had a sad look on his face so I said 'but Uncle Tyler helped him today by giving him new blood to make him better'. He got all excited and said ' can I do that too?'
The giving must run in the genes!!!
peace, love and happiness until tomorrow!!
Tuesday, April 27, 2010
DAY 0 !
Well, the transplant is complete. Brett's doing fine. I can't tell you the relief I feel now that his part is over. We have a road ahead of us, but we made it over the first bump.
Tyler did awesome today. It all started at 7:30 this morning. He was hooked up to the pheresis machine that did the work of drawing the blood out of one arm, spinning out the stem cells and putting the remaining blood back in to Tyler's other arm. It took a little over 5 hours...if my brain is calculating correctly.
Than a few hours later at 4pm a bag of stem cells arrived at Brett's door. They hooked up the bag to his hickman cathater - which is like a permanent iv line in Brett's chest. And we watched...
it took about 1/2 an hour and Brett was done. The cells ran into the line like a regular bag of fluid... Brett had no reaction what so ever. He just sat there - watching a soccer game on tv with Tyler. Brett told Tyler that as soon as the cells arrived in the room the soccer game just appeared on the TV!!!
Tyler had no side effects, at least that is what he is telling us. He is having some stiffness in his knee, which is already injured. The nurse told him that the shots could be aggrivating his knee a little bit more than usual. His platelet count is a little low... the doctor says the pheresis machine chews up the platelets so those don't get replenished back with the rest of the blood, so Tyler has to be carefull not to get injured in the next week. No contact sports or weight lifting ... which if you know Tyler is a huge request. He loves to exercise!! He's in great shape which helped so much today.
We can never really express our gratitude to Tyler for giving this fabulous gift. When Brett and I started dating I think Tyler was 8. So I've gotten the privilage of being able to watch Tyler grow in to this amazing man. He jumped into this ready for anything. Able to bring a baby into this world in one week and help save Brett the next. Thank you Tyler, we love you
Thank you Alanna for everything and for sitting in the hospital all day...waiting....
and yes, thank you Quinn for bringing a little sunshine into our day.
Alanna's mom was here too to help watch the baby while the whole thing happened. And God love her... she was willing to sit in the car with the baby if the baby wasn't going to be allowed up on the hospital floor. Thank goodness for the family room so she didn't have to do that!
Thanks Claud and Hank for being here- we love you guys.
Well, I need to get back to Brett. I cannot begin to thank you all for the prayers, emails, text and all the love that was sent to us. The net was there to catch him today!! I witnessed it!
I'll blog again tomorrow -
peace, love and happiness
Tyler did awesome today. It all started at 7:30 this morning. He was hooked up to the pheresis machine that did the work of drawing the blood out of one arm, spinning out the stem cells and putting the remaining blood back in to Tyler's other arm. It took a little over 5 hours...if my brain is calculating correctly.
Than a few hours later at 4pm a bag of stem cells arrived at Brett's door. They hooked up the bag to his hickman cathater - which is like a permanent iv line in Brett's chest. And we watched...
it took about 1/2 an hour and Brett was done. The cells ran into the line like a regular bag of fluid... Brett had no reaction what so ever. He just sat there - watching a soccer game on tv with Tyler. Brett told Tyler that as soon as the cells arrived in the room the soccer game just appeared on the TV!!!
Tyler had no side effects, at least that is what he is telling us. He is having some stiffness in his knee, which is already injured. The nurse told him that the shots could be aggrivating his knee a little bit more than usual. His platelet count is a little low... the doctor says the pheresis machine chews up the platelets so those don't get replenished back with the rest of the blood, so Tyler has to be carefull not to get injured in the next week. No contact sports or weight lifting ... which if you know Tyler is a huge request. He loves to exercise!! He's in great shape which helped so much today.
We can never really express our gratitude to Tyler for giving this fabulous gift. When Brett and I started dating I think Tyler was 8. So I've gotten the privilage of being able to watch Tyler grow in to this amazing man. He jumped into this ready for anything. Able to bring a baby into this world in one week and help save Brett the next. Thank you Tyler, we love you
Thank you Alanna for everything and for sitting in the hospital all day...waiting....
and yes, thank you Quinn for bringing a little sunshine into our day.
Alanna's mom was here too to help watch the baby while the whole thing happened. And God love her... she was willing to sit in the car with the baby if the baby wasn't going to be allowed up on the hospital floor. Thank goodness for the family room so she didn't have to do that!
Thanks Claud and Hank for being here- we love you guys.
Well, I need to get back to Brett. I cannot begin to thank you all for the prayers, emails, text and all the love that was sent to us. The net was there to catch him today!! I witnessed it!
I'll blog again tomorrow -
peace, love and happiness
Monday, April 26, 2010
DAY -1
Day-1...
I've been thinking all day about what I might blog tonight, which is why I'm so late posting.
I wanted to write something inspirational, confident and aw inspiring. But I got nothin'
Nothin' but the same ol' thing. So bare with me
Brett spent the day just like yesterday... headache, and getting sick to his stomach. He did a lot of sleeping and stayed pretty quiet all day. I went back home to get more things that we needed and do a few errands. I thought it would feel good to get out and have a task to do. But it was horrible. All I could think about was Brett. OH, he was in good hands... Jim and Sherry stayed with him, and our favorite nurse Nathan was taking good care of him. But all I could do was think about him and wonder if he was ok. Than on the way back to the hospital... it hit me. Tomorrow is THE DAY.
The past few days have been occupied with damp clothes, puke buckets, sips of water and trips to the bathroom. All of which have kept my mind other places than transplant day. Maybe that was part of God's plan... keep us both busy so we don't worry. I could think of other things that Brett would rather be doing to be kept busy but I try to find the best in this whole thing. Just like i try to convince myself that him getting sick all day is just getting that chemo drug out of his system a little quicker.
I tried to convince myself we are ready for this. I told myself Brett can do anything!! He really can... anything he puts his mind to he figures out a plan and executes it. Sometimes with too much thought behind it but he gets it done! And he's good at it... he's pretty much good at anything he tries. So why would this be any different?
He's spent a lot of time planning this, trying to find out all he could be for starting this process. I know he didn't get all of the answers he wanted. But I told him in one of our conversations about "why", that if they could tell him why he's gotten cancer 3 times in his life, someone would have a cure for cancer. Sometimes there just isn't an answer. You just has to have a little faith, he has to give a little bit of the control up to someone else, he has to trust. So tomorrow he's taking the risk, he's taking the leap, ... so I'm praying that the net will be there to catch him!
Transplant day starts early. Tyler has to be here for check in at 7:30... than the whole process starts. I promise to keep you all posted as much as I can. Tyler says he's feeling good and is ready for tomorrow. Please Pray for strength, peace, wellness and courage. Pray that the doctors and nurses have all the knowledge and confidence they need. And please give a little thanks that we have been given this amazing opportunity!!!!
PEACE and LOVE
I've been thinking all day about what I might blog tonight, which is why I'm so late posting.
I wanted to write something inspirational, confident and aw inspiring. But I got nothin'
Nothin' but the same ol' thing. So bare with me
Brett spent the day just like yesterday... headache, and getting sick to his stomach. He did a lot of sleeping and stayed pretty quiet all day. I went back home to get more things that we needed and do a few errands. I thought it would feel good to get out and have a task to do. But it was horrible. All I could think about was Brett. OH, he was in good hands... Jim and Sherry stayed with him, and our favorite nurse Nathan was taking good care of him. But all I could do was think about him and wonder if he was ok. Than on the way back to the hospital... it hit me. Tomorrow is THE DAY.
The past few days have been occupied with damp clothes, puke buckets, sips of water and trips to the bathroom. All of which have kept my mind other places than transplant day. Maybe that was part of God's plan... keep us both busy so we don't worry. I could think of other things that Brett would rather be doing to be kept busy but I try to find the best in this whole thing. Just like i try to convince myself that him getting sick all day is just getting that chemo drug out of his system a little quicker.
I tried to convince myself we are ready for this. I told myself Brett can do anything!! He really can... anything he puts his mind to he figures out a plan and executes it. Sometimes with too much thought behind it but he gets it done! And he's good at it... he's pretty much good at anything he tries. So why would this be any different?
He's spent a lot of time planning this, trying to find out all he could be for starting this process. I know he didn't get all of the answers he wanted. But I told him in one of our conversations about "why", that if they could tell him why he's gotten cancer 3 times in his life, someone would have a cure for cancer. Sometimes there just isn't an answer. You just has to have a little faith, he has to give a little bit of the control up to someone else, he has to trust. So tomorrow he's taking the risk, he's taking the leap, ... so I'm praying that the net will be there to catch him!
Transplant day starts early. Tyler has to be here for check in at 7:30... than the whole process starts. I promise to keep you all posted as much as I can. Tyler says he's feeling good and is ready for tomorrow. Please Pray for strength, peace, wellness and courage. Pray that the doctors and nurses have all the knowledge and confidence they need. And please give a little thanks that we have been given this amazing opportunity!!!!
PEACE and LOVE
Sunday, April 25, 2010
DAY - 2
Day - 2 almost complete.
Brett's still having "effects" of the chemo from yesterday. Still getting sick but less often than yesterday. He's probably going to be feeling pretty bad for a few days.
His parents are here. Jim & Sherry arrived late morning ... their visit with Brett was pretty limited since he kept falling asleep on them. Oh well, it's good to have them here.
Tomorrow (monday) is another rest day for him. Nothing planned treatmentwise other than the daily regimin of antibiotic,antifungal, etc etc etc. Hopefully, he will be feeling well enough to get up and walk a little bit.
So hard to see him like this but I know this too will pass. I just wish there was more that I could do to help him through this.I know he's sick of me asking him if he needs anything, or if he feels like he can drink something, or try to eat a cracker....but he's stuck with me naggin him!
I need to get back to the room, it's time for bed! Well, almost time.
Blog ya tomorrow!
Brett's still having "effects" of the chemo from yesterday. Still getting sick but less often than yesterday. He's probably going to be feeling pretty bad for a few days.
His parents are here. Jim & Sherry arrived late morning ... their visit with Brett was pretty limited since he kept falling asleep on them. Oh well, it's good to have them here.
Tomorrow (monday) is another rest day for him. Nothing planned treatmentwise other than the daily regimin of antibiotic,antifungal, etc etc etc. Hopefully, he will be feeling well enough to get up and walk a little bit.
So hard to see him like this but I know this too will pass. I just wish there was more that I could do to help him through this.I know he's sick of me asking him if he needs anything, or if he feels like he can drink something, or try to eat a cracker....but he's stuck with me naggin him!
I need to get back to the room, it's time for bed! Well, almost time.
Blog ya tomorrow!
Saturday, April 24, 2010
DAY -3
Today is Saturday... Day -3 and counting, also known as chemo day!! And boy was it. The
4 hours of chemo hit him pretty hard. Headache than some nausea. I wish I could tell you that's where it stopped but oh no, he went all out. However, as he got his 3rd dose of ativan to help with the nausea he asked me if I wanted to blog. I told him I could do i later, than he asked if I wanted to use his laptop instead of going to the family room to use that computer.
He told me I could be more descriptive if I blogged from here. I asked if he wanted me to post something for him... his reply is as follows (sorry in advance for those with weak stomaches)
You can put something like....
"as i type away on the blog, I hear the splatter on the floor as Brett is unable to beat back the fountain of vomit." I asked what else he wanted to say and he said I could take it from there.
Does that tell you anything? The guy can't lift his head off the pillow without being sick but he wants me to post that?....hmmmm humor still intack!
Apparently, the way he's responding today is to be expected. Nothing to worry about. If we could get his headache under control I think the nausea would be relieved. But there's only so much they want to try for now. Counts are on the way down so pain meds like motrin are a no no. I ventured down to the deepths of this ancient building to find the smallest cafeteria ever. Of course it was closed at 6:30pm but I was sent on a mission to get him the ol' standby for upset stomaches- Vernors. Thank God for vending machines! Hopefully when he can get some of that down with some crackers he'll be on his way to feeling good again.
We've had communication with Tyler a few times today... and he says all is still going well for him.
I'd better go the ativan is really kicking in. He's now asking the nurse assistant about his tattos.
" so brad, tell us about your tattos." this could get interesting.
4 hours of chemo hit him pretty hard. Headache than some nausea. I wish I could tell you that's where it stopped but oh no, he went all out. However, as he got his 3rd dose of ativan to help with the nausea he asked me if I wanted to blog. I told him I could do i later, than he asked if I wanted to use his laptop instead of going to the family room to use that computer.
He told me I could be more descriptive if I blogged from here. I asked if he wanted me to post something for him... his reply is as follows (sorry in advance for those with weak stomaches)
You can put something like....
"as i type away on the blog, I hear the splatter on the floor as Brett is unable to beat back the fountain of vomit." I asked what else he wanted to say and he said I could take it from there.
Does that tell you anything? The guy can't lift his head off the pillow without being sick but he wants me to post that?....hmmmm humor still intack!
Apparently, the way he's responding today is to be expected. Nothing to worry about. If we could get his headache under control I think the nausea would be relieved. But there's only so much they want to try for now. Counts are on the way down so pain meds like motrin are a no no. I ventured down to the deepths of this ancient building to find the smallest cafeteria ever. Of course it was closed at 6:30pm but I was sent on a mission to get him the ol' standby for upset stomaches- Vernors. Thank God for vending machines! Hopefully when he can get some of that down with some crackers he'll be on his way to feeling good again.
We've had communication with Tyler a few times today... and he says all is still going well for him.
I'd better go the ativan is really kicking in. He's now asking the nurse assistant about his tattos.
" so brad, tell us about your tattos." this could get interesting.
Friday, April 23, 2010
DAY -4
Well, RADIATION COMPLETE...
one phase done!
He's doing great! No side effects so far. He just amazes me! Dr Abidi (the attending doc) said he's doing superb!!
And of course today's last trip to the ROC...(radiation oncology center) was the smoothest, fastest trip of them all. Some trips took up to 3 hours, most of which was waiting for transport to pick him up. Today though was the perfect ending!
Tomorrow is chemo day. VP-16 or aka Etoposide is the drug they will use. It will be infused over 4 hours, along with 4 - 1 liter bags of saline. All the fluid will help flush out the chemo to protect his organs ... but hopefully not make Brett float away!
Brett's room has started a transition today... posters, pictures, words of inspiration, signs are now hanging all over the room! Thanks Claudia, Mary Sue, Ashleigh, Stefeni, Anthony, Bubba and everyone else who are in the photos. His room looks a little brighter now! I'm a little concerned about how happy he was to get the poster with photos of Shania Twain, Megan Fox and the Almay cosmetic model on it. Yes, I'm a little jealous! But I'll get over it
We got a quick text from Tyler today, saying the first shots went A-OK. Also good news! Good work Tyler!
I should go... it's getting late and we are not sure what time his treatment will start tomorrow. They say they start it in the morning... how early is anyone's guess.
I will post update tomorrow. Keep the prayers coming, they are obviously working.
here's the address if anyone wants to send him an old fashion note or card... or picture!
Brett Robinson
Harper University Hospital
10 Webber North BMT Unit Room 10210
3990 John R
Detroit MI 48201
Love you all!!!
one phase done!
He's doing great! No side effects so far. He just amazes me! Dr Abidi (the attending doc) said he's doing superb!!
And of course today's last trip to the ROC...(radiation oncology center) was the smoothest, fastest trip of them all. Some trips took up to 3 hours, most of which was waiting for transport to pick him up. Today though was the perfect ending!
Tomorrow is chemo day. VP-16 or aka Etoposide is the drug they will use. It will be infused over 4 hours, along with 4 - 1 liter bags of saline. All the fluid will help flush out the chemo to protect his organs ... but hopefully not make Brett float away!
Brett's room has started a transition today... posters, pictures, words of inspiration, signs are now hanging all over the room! Thanks Claudia, Mary Sue, Ashleigh, Stefeni, Anthony, Bubba and everyone else who are in the photos. His room looks a little brighter now! I'm a little concerned about how happy he was to get the poster with photos of Shania Twain, Megan Fox and the Almay cosmetic model on it. Yes, I'm a little jealous! But I'll get over it
We got a quick text from Tyler today, saying the first shots went A-OK. Also good news! Good work Tyler!
I should go... it's getting late and we are not sure what time his treatment will start tomorrow. They say they start it in the morning... how early is anyone's guess.
I will post update tomorrow. Keep the prayers coming, they are obviously working.
here's the address if anyone wants to send him an old fashion note or card... or picture!
Brett Robinson
Harper University Hospital
10 Webber North BMT Unit Room 10210
3990 John R
Detroit MI 48201
Love you all!!!
Thursday, April 22, 2010
Day -5
It's Thursday already, I cannot believe it. Day -5
If today is thursday than that means tomorrow is Friday!
Brett's down for his last treatment for today and since tomorrow is Friday that means he only has 2 more radiation treatments!!!
He's doing great. It's almost like there's nothing going on. His counts have dropped only slightly so we questioned them today thinking they should be lower. The nurse reassured us that they will drop in time, not to worry! The drop in his white blood cells, and red blood cells and platelets are normal and all signs that the radiation and eventually the chemo, which he gets on Saturday is working to kill his bone marrow to make "room" for Tyler's cells.
Everyone knows that Tyler is his donor, right? Considered a great match! It was a battle for a while. Travis was a match first but Travis has a different blood type... so Tyler was tested. Tyler had the same number of "matches" as Travis. Unheard of right... how many people can say they have two almost perfect matches, not to mention in one family of only 5??? So the contest to see which brother wins continued with another blood test to dive a little deeper. 2nd blood testing came back that both brothers still had same number of matches again... however, Tyler has the same blood type so he wins!!
Everyone also knows that Tyler and his wife Alanna just had their first baby right? A week ago yesterday beautiful little Quinn Nora came into this CRAZY world!! We got to see her on Sunday and she is such a gift! Her timing was perfect for us... just what we needed before starting this- well, i guess we'll call it an adventure. I cannot tell you what holding her felt like, my heart filled and my soul felt renewed. Her peacefulness and obliviousness made me and I think Brett, forget about the stress and fear that has followed us for the past few months. She's a blessing in more ways than she'll ever know.
Back to Tyler... he starts his part of the "process" tomorrow. Unfortunately, he has to start giving himself shots 3 times a day for 4 days to boost all his cells. We pray this goes easily for him and the only issue he has is the inconvenience of finding time to do the shots inbetween diaper changes.
I guess that's it for today!
Thanks again for all the support....
If today is thursday than that means tomorrow is Friday!
Brett's down for his last treatment for today and since tomorrow is Friday that means he only has 2 more radiation treatments!!!
He's doing great. It's almost like there's nothing going on. His counts have dropped only slightly so we questioned them today thinking they should be lower. The nurse reassured us that they will drop in time, not to worry! The drop in his white blood cells, and red blood cells and platelets are normal and all signs that the radiation and eventually the chemo, which he gets on Saturday is working to kill his bone marrow to make "room" for Tyler's cells.
Everyone knows that Tyler is his donor, right? Considered a great match! It was a battle for a while. Travis was a match first but Travis has a different blood type... so Tyler was tested. Tyler had the same number of "matches" as Travis. Unheard of right... how many people can say they have two almost perfect matches, not to mention in one family of only 5??? So the contest to see which brother wins continued with another blood test to dive a little deeper. 2nd blood testing came back that both brothers still had same number of matches again... however, Tyler has the same blood type so he wins!!
Everyone also knows that Tyler and his wife Alanna just had their first baby right? A week ago yesterday beautiful little Quinn Nora came into this CRAZY world!! We got to see her on Sunday and she is such a gift! Her timing was perfect for us... just what we needed before starting this- well, i guess we'll call it an adventure. I cannot tell you what holding her felt like, my heart filled and my soul felt renewed. Her peacefulness and obliviousness made me and I think Brett, forget about the stress and fear that has followed us for the past few months. She's a blessing in more ways than she'll ever know.
Back to Tyler... he starts his part of the "process" tomorrow. Unfortunately, he has to start giving himself shots 3 times a day for 4 days to boost all his cells. We pray this goes easily for him and the only issue he has is the inconvenience of finding time to do the shots inbetween diaper changes.
I guess that's it for today!
Thanks again for all the support....
Wednesday, April 21, 2010
Day - 6
Day - 6 and he's doing really well.
2nd full day of radiation complete... radiation half over!!
He's sleeping right now from the Benadryl. He had a strange muscle spasm in his jaw tonight... yes little Claudia his jaw! Apparently it's very common to have muscle spasms when you take compazine (which is for nausea). They stopped the benadryl which they usually give with the compazine, earlier today because it was knocking him out for 12 hours at a time. Well, we find out now that it keeps you from having spasms... hmmmm guess i should not have worried about so much sleep. The spasm only lasted a few minutes but was a little uncomfortable.
I just want everyone to know I actually BEAT Brett in a card game!!! a card game called Yahtzee Hands Down. Ok so he's drugged up and I took advantage but it's never happened before. Told him I was going to post that for sure tonight!
I spent a few hours this afternoon while Brett was in radiation, sitting on a bench, in the sunshine in front the most beautiful dogwood tree in bloom i've ever seen. Spring is good I thought, a time for new life! Fitting for this time in our life...
But sometimes when I sit and have too much time to myself, I think too much. I begin to worry about this whole crazy adventure we're going through. I guess the best part about coming from a large family is that you don't usually have to much time alone. Anyway, after a few moments of letting my mind get away from me, I remember who I'm worrying about. Brett! Superman as Patty his nurse sometimes refers to him, Lansing's own Lance Armstrong as Dr Williams has referred to him to other patients as. He rebounds like no other! His endurance, his strength and his willpower have gotten him this far! What is there to worry about ? Right? So I took a few deep breathes filled with the frangrance of the dogwood tree, said my prayers and called my sister to get my mind on something else!!!!
2nd full day of radiation complete... radiation half over!!
He's sleeping right now from the Benadryl. He had a strange muscle spasm in his jaw tonight... yes little Claudia his jaw! Apparently it's very common to have muscle spasms when you take compazine (which is for nausea). They stopped the benadryl which they usually give with the compazine, earlier today because it was knocking him out for 12 hours at a time. Well, we find out now that it keeps you from having spasms... hmmmm guess i should not have worried about so much sleep. The spasm only lasted a few minutes but was a little uncomfortable.
I just want everyone to know I actually BEAT Brett in a card game!!! a card game called Yahtzee Hands Down. Ok so he's drugged up and I took advantage but it's never happened before. Told him I was going to post that for sure tonight!
I spent a few hours this afternoon while Brett was in radiation, sitting on a bench, in the sunshine in front the most beautiful dogwood tree in bloom i've ever seen. Spring is good I thought, a time for new life! Fitting for this time in our life...
But sometimes when I sit and have too much time to myself, I think too much. I begin to worry about this whole crazy adventure we're going through. I guess the best part about coming from a large family is that you don't usually have to much time alone. Anyway, after a few moments of letting my mind get away from me, I remember who I'm worrying about. Brett! Superman as Patty his nurse sometimes refers to him, Lansing's own Lance Armstrong as Dr Williams has referred to him to other patients as. He rebounds like no other! His endurance, his strength and his willpower have gotten him this far! What is there to worry about ? Right? So I took a few deep breathes filled with the frangrance of the dogwood tree, said my prayers and called my sister to get my mind on something else!!!!
Tuesday, April 20, 2010
DAY -7
Hello Everyone!
Wow the first time to create a blog... how simple
Well today is day -7. Yes as in minus 7. The count down begins, 7 days to transplant (which is considered day 0) Not much to report as of yet. Today was his first day of radiation and he did very well his first round. I'm writing now while he's down for his next treatment. He's very tired from the Benadryl and lack of sleep so he slept most of the day away.
A goal the nurse has set for him is to walk at least 10 laps around the unit each day... first thing he noticed was the stationary bike in the hallway! Yeap, he asked if he could use that instead. A cyclist through and through!
The nurses have been amazing so far. They really know their stuff and have brushed up on Brett's history better than some of the doctors. They are knowledgable to all of his questions, which is a huge plus. They are also extremely polite! Nathan - his nurse last night even thanked him for his urine sample!
I will keep this post short so I don't bore you all with too much info
Thank you for your prayers and words of encouragement
Love
Amy Jo
Wow the first time to create a blog... how simple
Well today is day -7. Yes as in minus 7. The count down begins, 7 days to transplant (which is considered day 0) Not much to report as of yet. Today was his first day of radiation and he did very well his first round. I'm writing now while he's down for his next treatment. He's very tired from the Benadryl and lack of sleep so he slept most of the day away.
A goal the nurse has set for him is to walk at least 10 laps around the unit each day... first thing he noticed was the stationary bike in the hallway! Yeap, he asked if he could use that instead. A cyclist through and through!
The nurses have been amazing so far. They really know their stuff and have brushed up on Brett's history better than some of the doctors. They are knowledgable to all of his questions, which is a huge plus. They are also extremely polite! Nathan - his nurse last night even thanked him for his urine sample!
I will keep this post short so I don't bore you all with too much info
Thank you for your prayers and words of encouragement
Love
Amy Jo
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