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
Sunday, May 30, 2010
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
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