GREAT NEWS!!!!! white count .8 so we are 75% sure we will be homeward bound tomorrow!!!!
The rash has gotten a bit better where it started and a bit worse where it is traveling. They believe it will continue to resolve with the help of steroids and the fact his white count is going up.
They are giving him transfusions all day today in anticipation of leaving tomorrow and lasic to get rid of some of the fluids.
We are going to meet with the discharge coordinator to make sure I have the right meds to take home since they have changed them frequently due to the rash.
Since he needs blood draws every other day I also need to make sure we have that in place before leaving.
Chaplin Jeannie just stopped by because she heard the good news. She saw the concern about leaving our well monitored environment on my face but assured me they are all only a phone call away!
I know Bill can't wait to sleep in his own bed.
Thank you again and again and again for all the prayers that have helped get him through this phase. As we transition back home I will continue to blog as frequently as there is something to report. It is my hope and prayer that as time goes on I will have less and less to report but will always keep any information flowing. We will ALWAYS hold each and everyone of you deep within our hearts and in our daily prayers of Thanksgiving!
Love,
Bill and Kay
Monday, May 7, 2012
Day +12
Sorry this is getting posted the day after. Yesterday was busy white count went up to .3. So Dr. Mehta said if white count continues to go up and no other complications Bill can probably come home early in the week. I panicked a bit because I still had not had the carpet cleaned. I jumped on the train back to Geneva to get the house ready! So all the linens are washed, every surface disinfected, and carpets cleaned. I brought the car back so will be be ready to leave! Molly drove home last night! SOOOOOOO glad she is home! Put a GIANT smile on Bill's face!
Saturday, May 5, 2012
Day +11
Upward Bound..........but a Rash of a Day!!!!
When the team made rounds this morning Dr. Mehta walked in with a big smile and said well your white cell count has improved 100%. Yesterday he was .1 today .2!!!!! Normal is between 3.5 and 10.5 so there is a way to go. His platelets were down to 10 and Hemoglobin up to 9.5. These are distorted numbers since he has been receiving transfusions so they really are not his cells we are counting but the donor's cells. All of his neutrophils, lymphocytes, etc are still tltc (too low to count).
Today's major challenge is his rash. He has had a small rash on and off for about 4 days. They have changed his antibiotics several times. This morning it was taking over his neck and upper back. The team feels confident it is a reaction to a drug but trying to determine which one may take some doing. By noon today the rash has taken over completely covering his head, chest and arms and back to the point where his back is completely one red blotch. They are loading him with IV Benadryl and increased his dosage on his pain meds for the throat ulcers so he is sleeping a lot. This is a good thing to help pass the time quickly.
Hospital Allergist just came and now she is going to speak to the attending physician and together they will make a recommendation to the transplant team of which medication to stop. The balancing act here is to find another medication to cover the same bacteria group. Hopefully they figure this out soon! The good news is they have him so loaded with antihistamines so he is not scratching so they not too worried about this becoming an infection yet.
Here is some stem cell transplant trivia:
The preservative they use to freeze the stem cells has a VERY strange smell. It is referred to as Creamed Corn. The really strange thing is this smell stays with the recipient for about 24hours. The entire room reeks of this smell but the person can not smell it themselves. When we are walking the halls is is very obvious passing each room who just received a new immune system! People receiving donor transplants are very lucky if their donor is local and the cells do not need to be frozen saving those around them from this unusual odor!
Bill is all comfy in bed under his blanket awaiting the Kentucky Derby!!!!!
When the team made rounds this morning Dr. Mehta walked in with a big smile and said well your white cell count has improved 100%. Yesterday he was .1 today .2!!!!! Normal is between 3.5 and 10.5 so there is a way to go. His platelets were down to 10 and Hemoglobin up to 9.5. These are distorted numbers since he has been receiving transfusions so they really are not his cells we are counting but the donor's cells. All of his neutrophils, lymphocytes, etc are still tltc (too low to count).
Today's major challenge is his rash. He has had a small rash on and off for about 4 days. They have changed his antibiotics several times. This morning it was taking over his neck and upper back. The team feels confident it is a reaction to a drug but trying to determine which one may take some doing. By noon today the rash has taken over completely covering his head, chest and arms and back to the point where his back is completely one red blotch. They are loading him with IV Benadryl and increased his dosage on his pain meds for the throat ulcers so he is sleeping a lot. This is a good thing to help pass the time quickly.
Hospital Allergist just came and now she is going to speak to the attending physician and together they will make a recommendation to the transplant team of which medication to stop. The balancing act here is to find another medication to cover the same bacteria group. Hopefully they figure this out soon! The good news is they have him so loaded with antihistamines so he is not scratching so they not too worried about this becoming an infection yet.
Here is some stem cell transplant trivia:
The preservative they use to freeze the stem cells has a VERY strange smell. It is referred to as Creamed Corn. The really strange thing is this smell stays with the recipient for about 24hours. The entire room reeks of this smell but the person can not smell it themselves. When we are walking the halls is is very obvious passing each room who just received a new immune system! People receiving donor transplants are very lucky if their donor is local and the cells do not need to be frozen saving those around them from this unusual odor!
Bill is all comfy in bed under his blanket awaiting the Kentucky Derby!!!!!
Friday, May 4, 2012
Day +10
Today is the Bottom!!!!!! That means in theory now everything starts looking better! Bill's blood counts should start going up, his side effects should start diminishing, and they should start talking about going home. He said it seemed a little easier to swallow this morning and refused to be put on a pain pump. Although when I mentioned ordering breakfast I got a HUGE dirty look! It is a combination of being repulsed by the thought of food and the painful throat! I must say my skin has definitely thickened up these past 2 weeks!!!!!I told him going into this he gets a pass on everything until July 1st!!!!
He got a big smile on his face this morning when he saw his day nurse is Alex. She was his nurse for several nights earlier and he loves her thorough, quiet nature. I call her the church mouse. She is the only night nurse that would already be at work in the room before I would wake up.
So....... today he gets a red blood transfusion, hemoglobin is 8.0. His absolute neutrofils are still too low to count. white blood is .01 and platelets 12. These are the magic numbers we monitor and once they start approaching a normal range consistently is when they start talking about going home. We have spent 11 days and nights here so far. Bill's coping mechanism is to get in the zone! Mine is to envision this is a luxury hotel without room keys!
Thank you for all the prayers!!!! Please know how much they are appreciated and I see their power. Bill's throat is improving and I was able to walk a few laps with Amy last night!
Kay
He got a big smile on his face this morning when he saw his day nurse is Alex. She was his nurse for several nights earlier and he loves her thorough, quiet nature. I call her the church mouse. She is the only night nurse that would already be at work in the room before I would wake up.
So....... today he gets a red blood transfusion, hemoglobin is 8.0. His absolute neutrofils are still too low to count. white blood is .01 and platelets 12. These are the magic numbers we monitor and once they start approaching a normal range consistently is when they start talking about going home. We have spent 11 days and nights here so far. Bill's coping mechanism is to get in the zone! Mine is to envision this is a luxury hotel without room keys!
Thank you for all the prayers!!!! Please know how much they are appreciated and I see their power. Bill's throat is improving and I was able to walk a few laps with Amy last night!
Kay
Thursday, May 3, 2012
Day + 9
Ok............ sorry for the detour yesterday but we are back on track today! .
Today is looking a little better than yesterday. The team decided to put Bill on all IV medication so he does not need to swallow the millions of pills. They changed his antibiotic in hopes that his hives would improve and it seems to be working. He was able to eat some jello and soup today so that is a definite improvement from yesterday. He is struggling to keep his eyes open today but I am hoping when Family Feud comes on that might change. His blood pressure is back to normal and his temperature has improved.
It is my hope that yesterday was the bottom and he is now on his way back up!
So please keep those prayers coming and please add a special prayer for Amy. She received her transplant yesterday. Her husband started running a fever a few days ago so he had to leave and she is going through this by herself. She is REALLY struggling with side effects from her chemo and radiation. Despite how completely horrible she feels when I peek in on her she still can manage a smile and always thanks me for coming to check on her. What an inspiration Bill, Amy and others here are to those of us who wish so very much we can help them feel better but can only sit by and pray their discomfort passes quickly.
I just had a long conversation with Lauren, a relatively new nurse on this floor about how difficult it is to not be able to really do anything to help someone sometimes. It is difficult for me to put into words what a life changing experience this has been and continues to be for us. Sometimes I forget how unimportant the silly, sometimes pathetic work stuff really is. But then I look at Bill or Amy or Scott or Don and see them fighting through some REALLY tough stuff and it sure puts thing into prospective.
Thank you all so VERY much for those prayers, love and never ending support!
Today is looking a little better than yesterday. The team decided to put Bill on all IV medication so he does not need to swallow the millions of pills. They changed his antibiotic in hopes that his hives would improve and it seems to be working. He was able to eat some jello and soup today so that is a definite improvement from yesterday. He is struggling to keep his eyes open today but I am hoping when Family Feud comes on that might change. His blood pressure is back to normal and his temperature has improved.
It is my hope that yesterday was the bottom and he is now on his way back up!
So please keep those prayers coming and please add a special prayer for Amy. She received her transplant yesterday. Her husband started running a fever a few days ago so he had to leave and she is going through this by herself. She is REALLY struggling with side effects from her chemo and radiation. Despite how completely horrible she feels when I peek in on her she still can manage a smile and always thanks me for coming to check on her. What an inspiration Bill, Amy and others here are to those of us who wish so very much we can help them feel better but can only sit by and pray their discomfort passes quickly.
I just had a long conversation with Lauren, a relatively new nurse on this floor about how difficult it is to not be able to really do anything to help someone sometimes. It is difficult for me to put into words what a life changing experience this has been and continues to be for us. Sometimes I forget how unimportant the silly, sometimes pathetic work stuff really is. But then I look at Bill or Amy or Scott or Don and see them fighting through some REALLY tough stuff and it sure puts thing into prospective.
Thank you all so VERY much for those prayers, love and never ending support!
Wednesday, May 2, 2012
Day +8
Sorry I am late in getting today's information out. It has just been one of those days........ One that we expected but hoping would not come.
To quote my guardian angel "Things have to get worse before they get better. Fever and sores developed today as the doctor predicted. Please say a little prayer this all passes quickly."
They do an amazing job here at Northwestern and kick into high gear. As a precaution they put Bill on iv antibiotics, took blood cultures and chest x-ray to rule out anything other than this just being a typical result of his white blood count being too low to count so his body is fighting back.
Bill's answer: Sleep and wake me up when I am all better!!!!!
Thank you everyone for those continued prayers.
Bill and Kay
To quote my guardian angel "Things have to get worse before they get better. Fever and sores developed today as the doctor predicted. Please say a little prayer this all passes quickly."
They do an amazing job here at Northwestern and kick into high gear. As a precaution they put Bill on iv antibiotics, took blood cultures and chest x-ray to rule out anything other than this just being a typical result of his white blood count being too low to count so his body is fighting back.
Bill's answer: Sleep and wake me up when I am all better!!!!!
Thank you everyone for those continued prayers.
Bill and Kay
Tuesday, May 1, 2012
Day +7
Well today the shoe dropped but so far it appears to be only a slipper!!!!
Bill's hemoglobin dropped below 8 so he is receiving a couple units of blood today. His platelets are still at 17 so they will probably give him those tomorrow. Platelets are nice because they can transfuse them rapidly. The Hemoglobin takes about 2 hours per unit so he has been napping all day while receiving those. Hopefully after this long nap he will be ready to hit the hall for a few laps!
His white count is down to 0.3 so this is where they now monitor him very closely for any sign of infection.
His appetite is pretty much non existent but he does seem to still like his salty snacks every once in awhile.
During his nap I ran across the street to have coffee with ,Carolyn, the previous transplant patient I referred to in an earlier blog. It was so wonderful to see her in person and how well she is doing. She filled me in on some of her experiences and I caught her up with Bill. She just recently made contact with her stem cell donor! What a beautiful gift this complete stranger has given her. Every time Bill receives blood I am so grateful to the person for taking the time to do the selfless act that is keeping him going! It turns out she was in the same room Bill is in now!!!!! What a very small world we live in.
So from here on out we wait .............and watch for his numbers to go up and stay up!
So MANY people have asked us "How can I help? What can I do?" You all are providing us with so many prayers, an abundance of love and incredible support. We continue to be Blessed! Perhaps, though you might consider going to donate blood! It is such an amazing gift to the person on the receiving end!
Bill and Kay
Bill's hemoglobin dropped below 8 so he is receiving a couple units of blood today. His platelets are still at 17 so they will probably give him those tomorrow. Platelets are nice because they can transfuse them rapidly. The Hemoglobin takes about 2 hours per unit so he has been napping all day while receiving those. Hopefully after this long nap he will be ready to hit the hall for a few laps!
His white count is down to 0.3 so this is where they now monitor him very closely for any sign of infection.
His appetite is pretty much non existent but he does seem to still like his salty snacks every once in awhile.
During his nap I ran across the street to have coffee with ,Carolyn, the previous transplant patient I referred to in an earlier blog. It was so wonderful to see her in person and how well she is doing. She filled me in on some of her experiences and I caught her up with Bill. She just recently made contact with her stem cell donor! What a beautiful gift this complete stranger has given her. Every time Bill receives blood I am so grateful to the person for taking the time to do the selfless act that is keeping him going! It turns out she was in the same room Bill is in now!!!!! What a very small world we live in.
So from here on out we wait .............and watch for his numbers to go up and stay up!
So MANY people have asked us "How can I help? What can I do?" You all are providing us with so many prayers, an abundance of love and incredible support. We continue to be Blessed! Perhaps, though you might consider going to donate blood! It is such an amazing gift to the person on the receiving end!
Bill and Kay
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