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
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