Dustin visits... Nick dozes View from Nick's new room
They continue to reduce Nick's morphine. He is more alert and is complaining of pain. His nausea episodes seem to be limited to the morning and evening. I haven't heard what his counts are today. The intensity level here is thankfully lower now. Nick isn't there yet, but I am on the verge of being "bored" ... You will recall that "bored" is the milestone for getting out of isolation.
(return to shortcuts)Nick has not been able to open his email for a month. We are anxious to help him get into his email as soon as he feels up to it.
yippee eye oh kie yeah !!!...
Nick's white count tripled to 900... !!! ... (yours and mine are between
5,000 and 10,000)...
they needed his room...
got out of isolation this morning!
packed up and moved....
to 722...
a room with a view!
25 days in isolation... done with that for now!
no gown... no hat... mask only
feel naked without the hat and gown...
can just imagine all these germs now jumping off everybody's body and
filling Nick's room.
kinda scary... feel so unprotected... so vulnerable... for Nick i mean...
c'mon, his counts are only 900... are you sure we should be doing this?
... of course
no ante room.. you just walk right into his room...
room with a view!... a very nice view... day and night will be
different here.
feels good...
yippee eye oh kie yeah !!!...
a very good day today!
White counts increased to 1400. Nick went for a walk down the hall. Doc says one lap can be like a marathon for these guys. He is doing really good.
White counts are at 1500. Nick is experiencing some side effects to the various medications he is receiving. One medication cause high blood pressure so they give him a medication for that, that causes shakes and jitters, so they give him a medication to counter act the jitters... I think some of his side effects are also from the morphine withdrawal.
The next steps are to get Nick taking pills and sipping liquids and eating food. They are reducing his TPN (IV food)... they are currently taking him off IV for 4 hours a day. The goal is to get him down to 14 hours of TPN. It is my understanding, that at that level, his system will kick back in and he will be eating food... and then he can get out of here. Everything is going really well. Your prayers are working.
Nick is not real comfortable, but he is doing really great. His counts continue to rise... 1900 today. I think he is having trouble withdrawing from the morphine. He is throwing up and has the shakes. They decided to not reduce his morphine today. Hopefully this will let him be a little more comfortable.
Nick's white count is 2300 today. He is making really good progress. He was able to take some pills today, with tiny sips of water, so they were able to give him some methadone to help with the morphine withdrawal. His mouth and throat are really looking good, but there are still a few sore spots. Fewer and fewer bags hang from the IV pole. He is still in need of platelet transfusions, but he is making enough of his own red blood cells that he hasn't needed red cell transfusion. The last 2 days he hasn't felt up to taking a shower or going for a walk... weak, shakey and nauseas. He did play cards for about an hour yesterday but threw up violently immediately afterwards.
In a few more days, around day 30, they will do the bone marrow extraction that I wrote about on day 15. Apparently, they send it out to 5 different labs. I think we will learn more about how everything is going at that time. Pray for all the right stuff ... and none of the wrong stuff... to show up in the marrow.
November 18, 1999, Thursday - day twenty-eight
Nick's white count is 2700 today. Doc says we are entering into a kind of a boring phase. Nick will continue to feel better but the progress is slow. It is a period where we work on eating and drinking and gaining "outside world strength" back. We don't think he will be out for Thanksgiving, but maybe not too long after that. It is hard to speculate.
Nick's white count is 3100 today. They are going to wait to do the bone marrow extraction until next Tuesday, day 33. Doc says if things continue as they are, Nick could be out of here in 10 to 14 days! keep your fingers crossed... and keep praying! ... it's working ... real well! :)
Dustin visits... Nick dozes
View from Nick's new room
Andrew and Scott
visit... Nick dozes
New picture from Kathleen The artist
...and Nick dozes
In Iso :(
Out of Iso :)
note radiation burns
on chin and neck
Wow! Nick ate a popcycle and a piece of pound cake today! ... the first food Nick has eaten since October 15th. This is fantastic! ... a major hurdle... One step closer to going home.
The food binge continued today with a few bites of mashed potatoes, a chicken nugget and another popcycle.
Blueberry muffin and another popcycle. Doc says Nick should be out of here early next week. We don't know yet if we will go to the village or home. They will make that decision as the time gets closer.
JFK was assassinated 36 years ago today.
Nick gets vertical
Craig and Jeanell visit... Nick dozes!
Nick and Jim and N64
Hey! Doesn't Nick look great!
November 23, 1999, Tuesday - day thirty-three
Nick had the bone marrow extraction today. This is the same proceedure the donor goes through. It is said to be extremely painful as they drill a small hole through your hip bone and suck out the marrow. They will be testing his marrow to see if it is the donors or his old stuff. Obviously, we want it to be 100% donor marrow. He tolerated the proceedure very well. As usual, he requested very little sedation. When he was little, he went through these with only a local anesthesia.
The anesthesiologist was extremely impressed. She told me he was awake and could "feel" the whole thing. As they were getting into the painful part she asked him if he wanted more sedation and he said "no, it's okay, just keep going, I'm fine." She told me I had a very tough and brave son. What more could I say than ... "I know". He has had so many of these in his life. He is very familiar with the pain and knows he can master it. Doc says he probably belongs in the Guiness Book of World Records for most bone marrow extractions.
I mentioned previously, that in the past, I thought he liked to do these, and the spinal taps, with as little sedation as possible so he could go out with his friends when he got home. I think he also does it to show how strong he is... and to maintain control... in a situation where most people just say "put me out". Perhaps it makes him feel that he is the master of the situation. I think this is an important part of how he maintains such a fantastic attitude.
There was a student nurse in the room for the proceedure. We were talking about Nick's history and she asked us where we got the strength to deal with this over so many years. I told her my strength came from Nick. Nick didn't answer her... but if I were to answer for him, I would guess he would say "you do what you have to do... and keep going forward from there."
Nick was
taken completely off the morphine today,
took a fist full of pills by mouth,
and continued to eat a little bit of food.
The result of this?
Doc is sending him to the Village on Friday!!!!!!!!!!!!
Yippee eye oh kie yeah!!!!
...again.
Nick has lost quite a bit of weight lately. When he gets to the Village, we will be responsible for preparing his low bacteria diet, keeping germs at bay, and a lot of other things. It is, again, a scary responsibility. Our goal is to get his weight and his strength back.... then go home. Please, please, please pray that it goes this way... and that the bone marrow test yields the right results... and that GVHD (graft versus host disease) is something we don't have to face.... thank you.
Nick goes to the village on Friday, and if all goes well, he will go home a week from Friday. That's the great news. Since the Bone Marrow Coordinator is going to be gone tomorrow and Friday, we received discharge instructions today. To be honest, the instructions were a little depressing. Up until day 100, which will be January 29, 2000, Nick's medical care will continue to be extensive and his activities will be highly restricted. For the first year, until October 20, 2000, Nick's life will continue to be restricted. As Nurse put it, he won't get his life back until after the first year. Nurse says everybody is different but it could be many months until Nick gets all his strength back. Graft versus Host disease will continue to be a threat for a long time to come. The discharge instructions include a list of all the signs to look out for. Unfortunately, it looks like Nick still has a long road ahead of him.
Hey! On the other hand, Nick is doing great! The toughest part should be behind him... and everything has gone extremely well! So very much to be thankful for... that's what tomorrow is all about, huh... So very much to be thankful for...
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Giving thanks... to the greater power
that is looking after Nick
and.... today is the last day in the hospital ...much to be thankful for
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Day 36... ... 46th day at Hope. Doc came in on his morning rounds. "Nick, it has been a privilege and a pleasure to care for you....... See you on Monday in the clinic."
With that, we packed up and moved to the Village! Have you ever been to Shangri La? This is better than that...
"And oh, by the way... your bone marrow test results came back. Your bone marrow is 100% donor stuff ! "
I clapped and I cried.
Four of Nick's friends... Andrew, Dustin, Greg and Scott... came to visit today. They stayed for several hours and sat out on the front porch with Nick. I could tell he was really glad to see them. I think this kind of thing will really helps Nick recover. It is good for his mind and his spirit. We hear stories about how long it takes to recover from these things. The Home Health nurse that came tonight has a son that had a BMT 14 months ago. She says he is still not up to full speed... but everybody is different. We just have to be patient... very patient.
Nick tried to eat a little macaroni and cheese today but threw it up
immediately along with all the pills he had taken with it. He slept
all day and I didn't have any success in getting food or liquids in him.
He was able to take, and keep down, his evening pills. The pills
he is currently taking include, diflucin, procardia, ativan, pepcid, methadone,
colace, cyclosporin and prednisone. He takes 6 of the cyclosporin...
anti rejection drug. You should see them. They look like
gray submarines. They are huge! He is still on TPN (IV food)
for 14 hours a day. All in all, everything is going nearly perfect!
Nick went to the clinic this morning for blood labs and to see Doc. They are concerned about his weight but otherwise things are great! His blood counts continue to rise. Over the last 3 blood draws his platelets have gone from 25 to 24 to 30! without any transfusions! His white count is at 7.5 which is really good as well. All indications are that the marrrow is grafting very well. No signs of graft vs. host disease. Five friends came to visit last night. They talked about taking him out to dinner on January 29th, which will be day 100 and the first day he will be able to eat restaurant food.
The next 2 milestones are going home this Friday, and then day 100,
January 29th, when he goes off the low bacteria diet and can go out
in public without wearing a mask. The final milestone is October
20, 2000. One year after the transplant. On that day he can
meet his donor and the entire treatment process should be concluded as
I understand it. Sounds like a good day for a party with two guests
of honor.
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We have met 2 families
here that are waiting for their loved ones to die. They have both
brought motor homes to the campus where they maintain their heart wrenching
vigil. One is an older gentleman. The other is a young, beautiful
24 year old woman. She was on day 55 of her Bone Marrow Transplant
... (Nick is on day 39). On the day she was scheduled to go
to the Village, on what should have been a joyous day, they detected donor
vs. host disease in her liver. Apparently, they have no way to treat
it because they told her family she has about 2 weeks to live. Please
remember these families in your prayers. I cannot imagine what they
are going through.
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Quiet day... no clinic visit... working on eating.
Nick visited Doc in the clinic this morning and had his blood labs drawn. His blood counts are continuing to increase without any transfusions. Doc says all his counts are increasing at a really good rate. Doc says that as long as all his counts and functions look good on Friday, he can go home. His mouth is getting uglier and Doc says he probably has a bit of graft vs. host disease in his mouth. Doc didn't seem too concerned so we aren't either. They will keep an eye on it and Doc says they have some new medicine that appears to work pretty well against GVHD without the nasty side effects of the drugs currently in common use.
Nick is really looking forward to going home, as we all are. Friday will be his 53rd day at Hope... not bad. Nick pointed out to me that on Monday, he broke his old record for continuous days in the hospital. His previous record was 48 days. Some of you may recall that the only reason he got out that time was because we told the nurses we were leaving and started packing his stuff. They weren't going to let him go but he desparately needed to get out of there and go home. Once they could see we were leaving without being discharged, they sprang into action and got home health nursing all set up. It really created quite a stir at the time ... but you do what you have to do... and Nick needed out.
Well..... tonight should be the last night here. Tomorrow morning we get up and go have blood labs taken. Assuming all is well... Nick goes home. Nick is eating pretty good and seems to be doing pretty darn good. His mouth looks a little worse today, and his tongue definately has an orangeish, pinkish rash. We will show them it again at the clinic tomorrow to see if they want to start treating it.
Nick is really looking forward to going home tomorrow. Keep your fingers crossed...
Nick
is Home!!!
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