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Tom Lichter's SCT journal


Tom's SCT journal

Tom's SCT Journal Day -8 January 28, 2009

Well if the rest of the SCT is anything like today, Tom will have it made. Everything went well. He had a new PICC line (triple lumen) installed to replace the 2 lines. We were escorted to his room quickly in the stem cell unit. They did all the usual blood work, vitals, etc.

We met with the nurse practitioner and she did a physical exam and gave us yet more info on the SCT. They gave Tom Klonipen as a pre-med for seizures as the Busulfan can cause seizures. They then did Zofran and fluids and then the real fun began with the Busulfan. It's 3 hours long. Tom kicked me out as this began as he was tired, but so was I. We were up today at 5:30 am and just plain tired. So, so far so good.

The staff at Northwestern Memorial are wonderful. Tom is very nervous and emotional as is to be expected. I was as well. He said for the last week, he has been saying his goodbyes for now to everyone that is a part of his life. But we are very hopeful for this treatment and will just take things as they come, one hour, one day at a time. I'll try to update every day and get Tom's thoughts too to sprinkle in. He thought this was a good idea and hopefully someone else might benefit from it as we both did.

Tom's SCT Journal Day -6  January 30, 2009

Well today was day -6 and Tom is doing as well as can be expected. He is extremely fatigued already and has very little energy. He is a slight bit nauseated, but tolerable. His counts are still good and have not dropped at all yet.

He is on day 3 of Busulfan and gets one more day of that tomorrow. Yesterday he got a PICC line with 2 lines on his left arm for the Etoposide in a couple of days. He has a PICC in each arm now.  So he has the ability to get 5 lines of drugs and stuff in him. My son and I nicknamed him "Super Chemo Boy".

His spirits are still good, but he's not much in the mood for talking when we visit. So we just sit and watch some TV. He is not able to read or much else, but has been walking the halls for 3 miles so far every day.

They want him up and around as much as possible. He forgot to eat lunch today as he has to order his lunch like room service. Usually they call and remind him, but I guess they forgot that today too. So I had him get a large snack in the afternoon and he promised me he would eat dinner a little later.

So, all in all, not too bad.

The boys and I are also doing well so far, but I think the real challenges lie ahead. We shall see. One day at a time.

Tom's SCT Journal Day -5 & -4

Days - 5 (Sat) and -4 (Sun) were fairly uneventful for Tom. He said he is more tired than he knew a body could be though.  He was getting Klonipen with the Busulfan which is an anti-seizure med as well as Zofran and fluids.  Saturday he finished dose 4 of Busulfan.

Sunday he had one day of Etoposide.  They had to put in an additional PICC line in his other arm just for the Etoposide. They said it is in such a concentrated form that it would burn the regular PICC line.  (Nice thought).  They pulled it out right after the chemo last night.  

So far Tom's counts are not dropping.  He doesn't have any other troubles yet either like constipation, vomiting, nausea, mouth sores.  I think some of them are probably coming though.

He has still been walking 3 to 5 miles a day.  He said once he gets a couple of laps done, he is flying around the floor.  But when he's done, he has no energy, just drops into bed or the chair.

He's not able to read or focus on much of anything for long.  He is watching a few movies on TV.  I will bring a CD player and Portable DVD player today so he can have a little variety as the hospital TV doesn't have everything.

Tom's spirits are still good and he is quite the comedian of the SCT unit.  He always tries to get people to smile and laugh.

So we are just counting down the days until his new birthday (Thursday) and then recovery.  

Tom's SCT Journal Day -3 February 2, 2009

Oh last night was rough for Tom. He began getting really nauseous and vomiting about 8:00pm and it went on for a while. He also spiked a 101.3 fever. They did some blood cultures and a chest x-ray. He stopped vomiting and the fever went away about 2 am. Just like that. He said he just "wanted to die". (His words). He said he's had a lot of chemo and treatment, but nothing ever affected him like that.

He did manage to eat breakfast today but was in bed until I arrived at 12:30 this afternoon. I guess my presence was so great that he just had to get up. He started feeling better this afternoon and also had a good lunch.

He has no appetite but eats because he knows he has to. He is ordering easy foods to digest and lots of juice and liquids.

This afternoon he was pre-medicated with Zofran, Decadron and Ativan and then got the Cytoxan chemo. He was also getting potassium.  He was actually feeling much better and decided he had to do his walking. Our 18 year old was also there with us so we started walking. I gave out after a mile but Tom pressed on with Raymond. I think they might still be walking.

He is so glad tomorrow is the last chemo day. One more day of Cytoxan and then Weds is a rest day. Yeh!!

Tom was pretty down until I got there and after he got up and ate his spirits were better. I think visitors help too. He was so glad to se me and then our son surprised him and he was even happier.

They also took out his 2nd PICC line, so he just has the one now with 3 lines in it. Each little thing is something to be thankful for.

Tom's SCT Journal Day -2  February 3, 2009

Okay, well Tom is getting close to the big SCT day. He had his last chemo today which was day #2 of Cytoxan. He's not been sick again since Sunday night. He's still tired but not as bad as a few days ago. He wonders if it is the Decadron giving him a boost of energy His favorite drug.

He's walked 4 miles today. His spirits are good and he's eating, but only because he has to. No other nasty side effects today.

He has to mouthwash 4 times a day with a sodium, baking powder like solution. He can still use a toothbrush and razor as his platelets are still okay.

He's having a lot of trouble sleeping in the hospital and the sleeping pill they are giving him (Ambien) is not working so tonight they said they will give him something else stronger and earlier. He only had 2 hours sleep last night, so hopefully tonight he'll retire much earlier and get some good rest.

I brought him a CD player and IPod so he has nice music to listen to. He's not really able to read or even look at magazines. TV is his friend these days.

He now knows all the other SCT patients and their stories. That has been really beneficial for him to talk to other patients and not feel so alone and like he's the only one going through an SCT.

They also require him to meet with a social worker once a week or more if needed.

Tomorrow is a rest day and he is looking forward to it and not being hooked up to all sorts of tubes and bags.

Tom's SCT Journal Day -1 February 4, 2009

Hey, hey, Tom's almost there to his new birthday!! Today is day -1 and a day of rest. Well that just means no chemo drugs, but they are giving Tom other things in his little PICC line. He is still having Zofran for nausea, potassium, cyclosporine (anti-rejection) and one more, but it's escaping me right now. So he's still hooked up to all sorts of things. He is less tired, but the mouth sores are kicking in and he is having some slight trouble swallowing. He's sleeping really poorly, but has a nap during the day. Food has no taste he said, but he's eating to sustain. Lunch today was hard to get down as his throat hurt, so he is going to switch to softer foods and more liquids.

He and I walked 2 miles today and I was pooped when we finished. The docs think this is great as long as he has the energy.

He's still swishing with some mouth wash 4 times a day. His white blood count is down to 6.0 from 10.1 yesterday, so I think things will soon be more uncomfortable. His hemoglobin and all else is still good, but I assume those will be taking a dive too in the next days.

So tomorrow is the big day of the stem cell infusion. The nurses all tell us it is very anti-climatic, but we're still excited and hopeful for a new immune system for Tom.  So keep those good thoughts and prayers coming, Tom can sure use them. Take care.

Tom's SCT Journal Day 0 (New Birthday) February 5, 2009

Hey, Hey--Tom made it to the big day and a new birthday!! Today was day 0 and the stem cell infusion day.

He's been somewhat sick in the mornings with a lot of nausea the last couple of days and then by the afternoon he was better. They give him zofran and ativan for the nausea and it seems to do the trick although it makes him very drowsy. Today he almost slept right through the stem cell transplant. I had to keep waking him to check out what was going on.

We had a chaplain come in to bless the cells and Tom and I as well. They bring the bags of cells in this really neat cooler right into the patient's room. They thaw them and infuse right away. The whole thing really only took 30 mins and was quite anti-climatic as everyone told us.

Tom has his own nurse who specializes in SCT's for the next 6 days and she was an angel. She went over a few things but we already knew them. Like the creamed corn smell. Okay, it's really true and very odd to say the least. At least to me. It comes from the preservative that the cells are in. And it causes the patient to cough so the nurse was ready and made Tom suck on popsicles. He said he hadn't had a popsicle in 40 years, but he had some today.

His blood pressure and heart rate were somewhat high as he was very anxious but as things were winding down, he began to relax and the heart and blood pressure rates went back to normal.

The whole procedure somehow invigorated Tom. The nurse then made him shower as he hadn't had one in a few days and she scolded him. (Really just kidding.) He did manage some soft foods for dinner.

His counts are still not bad, but supposedly in the next few days, they will drop dramatically and he won't feel so hot. I believe his WBC was 6.1 today, HGB 11.1, platelets 240 and the rest I don't remember.

Tom wanted me let you know that he's pretty proud of the fact that in the last 8 days, he's walked 45 miles around those halls. What That's right--45 miles. He's got a tally sheet going. I'm healthy and don't walk that much. The nurses said they've never seen anyone log that many miles in such a short time.

Tom and I are very hopeful for this procedure and hope it gives him his health back as he said he's got a lot of living yet to do.

Tom's SCT Journal Day +1 February 6, 2009

I was hoping to write the positive days soon and here we are on Day +1! Tom made it well through last night and this morning, but he's developing some nausea and a general lousy feeling this afternoon. No fever, but mouth sores and sore throat. Eating is a chore, but he has been doing smoothies concocted by the nurse and soft easy palatable foods.

He's still on Cyclosporine for anti-rejection as well as Valtrex, Ativan, Zofran and now they are adding something to get his blood pressure down. It's a bit high from the Cyclosporine the nurse said. His counts are still holding, so every day we keep wondering when the big drop will be. His WBC is at 5.9 today and the rest of the levels are okay.

I stayed a few hours today and just had not a bit of energy so I didn't walk with Tom. He only logged one mile last night but not bad for a stem cell transplant day right But as I left today, he was beginning his power walk so we'll see how many miles he logs today. What a guy. His spirits are pretty darn good if you ask me.

He keeps fearing he is going to get sicker in the next few days with his counts dropping, but who knows, maybe he won't feel so bad. I have to say that the staff in his SCT unit are the most wonderful, attentive people. Every single person who enters his room is cheerful, kind and positive. It's really nice.

So that's it for today. I need some rest and I'm going to heed my own advice to caregivers and take a nap and relax tonight.

Tom's SCT Journal Day +3 February 8, 2009

Well, things are moving pretty much as expected. Tom's counts have dropped the last 2 days significantly. I believe his WBC is 1.0, HGB 9.0, platelets 95. He has had some fairly bothersome stomach/digestion issues the last couple of days. He has diarrhoea and cramps off and on. They are giving him Zofran for the nausea which comes and goes too. Today he was better but as the day wore on, the tummy issues came back. The onc said this is very common with the high dose chemo that Tom received. He has been eating small little meals more often than the 3 squares a day. His nurse has been making up some yummy shakes with different things in them and Tom said those actually taste pretty good. He also drinks a Boost high protein drink that goes down well too.

Tom's spirits are pretty down now too. He is starting to count the days he's been cooped up in the hospital as he is getting bored. He is such a normally active, A type personality, this sitting around is getting to him. But he's too sick for anything else. He doesn't have the focus to read or even look at picture books. TV gets boring and I've brought a DVD player with movies, but he's not interested in that either. I suggested to the nurse that the social worker stop by to see him and talk with him. She is going to call her and get her in there.

They are giving Tom Cyclosporine, and potassium, along with a little vial of Methotrexate chemo on days 1, 3, 5 and 7. I'm not quite certain what the Methotrexate is all about. Tom thinks it's to keep the new stem cells at bay so they don't go wild in there. On the plus side, Tom's logged about 60 miles of walking so far through today. I don't frankly know how he does it. He just forces himself up and around I guess. He wants to do it while he can. What a guy. Right at this moment, he said he's not sure he would do this SCT process again. But that's because he's in the thick of it. He has met a number of other patients in the unit who have already had 2 and 3 transplants. Let's hope this one does the trick right.

 Tom's SCT Journal Day +5 February 10 2009

Wow, the days are clipping right along with this SCT. (Not) It is hard to believe it's day +5 already, but for Tom, the days are dragging. He's been in the hospital 13 days today and 5 from the SCT. The onc is saying another week to two weeks in the hospital. Tom's main complaint is the stomach issues so far. His counts are pretty much bottomed out now except for the hemoglobin. He has not yet had any transfusions of anything. The doc just gave him a pump with Diluadid. Tom began to get this as an IV push yesterday for the stomach troubles and it really helps.

He has horrible cramps, hemorrhoids and diahreah off and on. With the meds though, he can at least be up and about and not tied to the bathroom. (Oh, he'd not be happy if he knew I was telling you this). But I remember others with the SCT also had these issues. He's eating some and getting about 2,000 calories a day. His nurse makes him some sort of shake with pudding, sherbet, milk and Ensure twice a day. That goes down good. He's pretty much eating soft, liquidy foods.

He has not yet had a fever, but they tell us that it will come sooner or later. It always does they said. He gets a baby dose of methotrexate today as an IV push. It supposedly keeps the stem cells from getting out of control. He has some slight mouth sores and sore throat so he gargles with magic mouthwash a few times a day and it is really helping.

His walking is up to about 65 miles so far. He has been able to walk every day so far and they think this is fabulous. His nurse makes him take a shower every day, but he's not too happy about it. Once he gets in there, it feels good, but the process of getting undressed and showering and re-dressed with all the IV tubes and such, is such a chore. Tom shaved his head before he went in the hospital but it's grown back and still not falling out from the heavy chemo. Should be pretty soon we think. I swear he looks great and not yet sickly. He has lost a little weight, but that's okay as he needed to shed some of those Decadron lbs anyway.

The nurses and docs said he is doing fabulously and right on track and possibly a little better than some allo SCT patients. Tom's spirits are not so great and he's counting the days he's been cooped up and the days until he goes home. He said he will not push to go home until he is ready, but counting nonetheless. I have asked the social worker to see him but so far they have not been in. The doc doesn't feel Tom's counts are completely bottomed out yet but almost there. Then he hopes Tom begins the climb back.

Tom's SCT Journal Day +6 February 11 2009

Well, Tom's bottomed out finally. That guy was holding those blood counts up but now they are at the bottom and have no where to go but up we pray. He did have a platelet transfusion today. He said today he feels the worst since his being admitted 2 weeks ago. The docs said this is normal and he will feel pretty bad for at least a few more days. He's still got some nasty stomach stuff going on, so he has a pain pump for that and some cremes and what not. (He'd get mad if I went into detail, but you get the drift).

He has a 99.2 fever, but that's okay and they said no one gets out of the SCT unit without at least one or more fevers. When it gets to 100.4, they start to take action, but he's not there yet.

He's tired and only did 2 laps of walking today. He was hoping to get more tonight after his dinner. He's eating, but soft and liquidy foods. They have also given him Gatorade and told him to cut the water a bit. Something to do with the salt they said. He is very tired, and understandably so. He drifted in and out of sleep today, but that's okay with me.

The only visitors Tom wants are our sons and myself. I have taken a day off every 3 days as it is very draining to go every day for hours on end. He said he just loves me being there even if he's sleeping. If that's all I can do for him now, then I'm there as I can be.

He said he's too tired to be down today and we were laughing and joking off and on. He's still on fluids and cyclosporine and a dose of methotrexate tomorrow. He's also on Valtrex 3 times a day for anti-viral. So the docs think everything is going pretty much to schedule and even though he's not feeling well, what he's experiencing is not out of the ordinary by any means.

I must say the SCT unit of Northwestern here in Chicago is fabulous. Every single person that enters Tom's room is cordial, kind and considerate. What angels they all are, but especially those nurses. They are sent from above.

 Tom's SCT Journal - Day + 7 & +8 February 13, 2009

Well yesterday was day +7 and absolutely the worst day so far for Tom. He ran a fever, was exhausted, barely able to eat, rash on the lower half of his body, only to name a few. They started him on an antibiotic called Vancomycin as a precaution for the fever. When the patient runs above 101.5, they do 2 sets of blood cultures (one from the PICC line and one in the other arm), urine test and chest x-ray to be sure of what might be going on. He slept off and on most of the day and was fairly agitated all day. I think it was from the fever. The docs were good and right on top of everything.

He forced himself to do a few laps around the floor but was exhausted when he was done and fell into bed. Didn't get up the rest of the day. He wondered how he was going to get through this as he was so sick and said he didn't really care what happened to him. He has a persistent case of diarrhoea and a very sore bottom. He saw the GI doc and they will give him some sort of GI cocktail they called it to help him out.

He is still on Dilaudid through a pain pump and that helps his belly pain. Today is day +8 and he's better. His fever is gone and he's a teeny bit better, but still feels pretty "trashed". He did sit up for a while in the recliner today and got a good long shower. They want him to shower every day to keep clean and fresh.

His stomach issues still continue and he's waiting for a gastro doc again. He has some slight mouth sores and sore throat, but tolerable. He ate better today and is getting about 1500 calories. Eating is a real chore he said but he's taking enough in the nurses said. They have him drinking Gatorade and things other than water as they are concerned about his sodium (salt) intake. He's still on Vancomycin, sodium chloride, Cyclosporine, as well as IV pushes of Zofran, compazine and Valtrex 3 times a day. (That's what I can remember).

His counts are still at the bottom, except his HGB is 10. That one hasn't dropped yet. He hasn't started the climb back up yet. He's had 2 platelet transfusions so far. Now he is "neutropenic" so hand washing and isolation precautions are in effect in his room. Well they are always doing the hand washing thing, but now they are getting really sticky about the isolation thing.

I am the only visitor for the last week except our son anyway. We have said no to most friends and family to visiting. We just can't be too careful. Tom's spirits were better today and we even laughed and joked and talked a lot. He said he was more "relaxed" today and the shower felt great. He said he just keeps worrying that his counts won't climb back up and what will they do then. I have every confidence that his counts will climb back up, but it takes a bit. Patience is the key here right Well, hope I'm giving good details here as I know when I was reading these that others wrote, they were very informative.

Thanks also for the cards and well wishes from everyone. Tom is just so touched.

Tom's SCT Journal Day +9 February 14, 2009

Today is day +9 and things are pretty rough today for Tom. He has really bad mucositis and sort throat. Today that is the worst. He is not able to eat anything and barely take a sip, so they are ordering liquid IV nutrition and that will start right away. He couldn't even eat a yogurt or popsicle. Last night he had a severe allergic reaction to the antibiotic they were giving him for his prior fever. He didn't remember today what is was, except that he developed a horrible rash all over his body. They had to give him huge, massive doses of Benedryl to stop it. So he is extremely groggy today and then they have him on a pain pump of Diluadid for the mouth and tummy stuff. (All sorts of fun stuff going on there.)

He's really out of it, but did manage a mile of walking. He's still on Vancomycin, cyclosporine and sodium chloride as well as periodic Compazine and Zofran for nausea. He keeps saying he doesn't know how he will get through this and how do people live after all this he is going through.

He's pretty down and it seems worse when he's in and out of sleep all day. Our son and I visited but he was so tired and lethargic. He then gets upset when we have to leave. He just wants someone to sit by his bedside all day.

His WBC is 0.3, ANC too low to count, HGB 8.7 and platelets are 23. His HGB is going down and they do a transfusion when it goes below 8 so that might be coming too. He's already had several platelet transfusions. His onc has visited today and said everything is on par with other patients and nothing out of the ordinary. His onc said the average day is day +12 for patients to begin the climb back up. We're hoping.

Tom's SCT Journal Day +10 & +11 February 16, 2009

Tom is feeling a bit better today. Yesterday was very hard for him. It was day +10 and he was in bed most of the day. He did manage 4 laps around the halls, but he was "hurting" as he says. Today was better than yesterday.

Tom's counts are up a teeny bit the last couple of days. His WBC is 0.3, platelets 16, HGB 8.6 and ANC still 0. But the docs say this is encouraging. His mouth sores and throat are improving a bit but his voice is hoarse. Doesn't hurt though. His tummy ailments are improving also. The rash on his lower half is improving greatly.

He is eating some smallish meals through the day. They never did hook him to the IV nutrition because he did start eating. He eats oatmeal, cheerios, cranberry juice and vanilla yogurt. Tonight he had a pot pie and it actually went down well with some tomato soup. The docs are actually starting to talk about DISCHARGE!! They are saying possibly this Friday. Seems very soon, but we both sure looking forward to his being home. Tom said he is very leery of being discharged too soon and having to go back with some side effect or fever or such. But we feel confident the docs are on top of things and won't release before he is due to be.

He's received a few days of Vancomycin for a fever that came and went a few times. He's also on fluids and cyclosporine. Today he got another mini dose of Methotrexate for the stem cells. Tom feels like things are moving very slowly in the right direction to recovery. He is still extremely tired a good portion of the day. His spirits are somewhat improved too.

We know there will be bumps in the road ahead, but still have faith that Tom's recovery will continue and he'll soon be home and driving us all nuts!!

Tom's SCT Journal Day +12 February 17 2009

Okay so maybe day +12 is the magic day. Tom's counts are coming up. His WBC is 1.6, HGB 9.3, ANC 0.6 and platelets 21. So the counts are definitely headed up. It's such a good feeling--I can't tell you how happy I am. I know it's still a very long road, but we must start heading up somewhere right The docs are talking discharge this week, maybe even Thursday or Friday. So we have to meet with different people for the discharge process. I know a lot of it, but I now know that all transplant centers are different. From reading others stories, our hospital is not as strict on being at home as some. So just waiting to get all the details to prepare the house.

They have now begun to give Tom most of his meds orally. He's just on some fluids and an antibiotic. He's still getting Zofran along with Valtrex, Cyclosporin and Compazine, but those are now oral. His mouth sores are better as well as the stomach and digestion issues. He still has no appetite but is eating and drinking enough. His worst complaint now is the extreme fatigue. But he doesn't fight it--he just sleeps when he is exhausted. He's walking about a mile during the course of the day. He only wants to be discharged when he is 100% ready according to the docs. We don't want to be coming back here with problems.

To be honest, Tom said he's very nervous about going home and being exposed to things. The hospital was like a bubble. But if we do everything right, we hope to prevent infections and sickness. I'm a clean freak anyway. So today is the first day I felt fairly confident that things are headed up. Tom's mood is pretty good the last couple of days and much more relaxed than a week ago. So fingers crossed that Tom is home in a couple of days.

Tom's SCT Journal Day +13 February 18 2009

Well it looks like tomorrow evening or Friday morning might be the big homecoming day for Tom. His counts rose a little more, except for the HGB which was 8.1 so they transfused him this afternoon. They are switching all meds over during the course of the day today to oral. All his concerns like his tummy, his throat his rash, are much, much better. He is just so tired he said he can't think much at all. He said he never knew fatigue like he has existed!! He doesn't even remember what we talk about and what day it is. Nurses and docs have said this is normal and to be expected. He doesn't even say much about going home he is so tired. I know that his own bed and bathroom have to be better than the hospital though.

They say he is eating okay, but needs a few more calories if he can. They suggested small meals or snacks more frequently through the day. I met with the discharge nurse practitioner and he gave me all the information for Tom's home care. He'll have a home nurse (which we already had) every other day the first week for blood work. If he needs fluids or magnesium or potassium, they can do it at home. If he needs blood or platelets, it will be down to the hospital. Or if he gets a fever over 100.4, we are calling ASAP to see what our directions are (ER or clinic). He will see his onc a few days after discharge and I think a weekly clinic visit will be scheduled.

In talking with the nurse, I was surprised that the isolation precautions and diet restrictions are not stricter. They said Tom could have visitors as long as they weren't sick. They said as long as our house was clean, nothing special was required. They said Tom and I could use the same bathroom. They said no buffet food or certain take out. But they were pretty lenient on the restrictions. I thought the allo patients had many more restrictions placed on them. But, I'm placing MY restrictions on Tom. And he agrees and will comply.

My house was really thoroughly cleaned today. I will make sure to clean Tom's bathroom every day and no one but he will use it. I will totally restrict him to the neutropenic diet for a long while. There will be NO visitors. We will have strict hygiene precautions here by the boys and I. I mean they even said Tom could go to work in a week or so if he felt up to it. HUH No way will he go there for a long while. And I know Tom's not going to feel like going anywhere except to the bed or couch. I will encourage him to exercise and have some light activity as they feel that is essential to recovery. And he was walking in the hospital every day anyway. We have an exercise bike and treadmill so he'll use those if he wants.

Well hopefully tomorrow or Friday, this part of this ordeal is over and the next one begins and we hope that leads to better and healthier days ahead for Tom.

Tom's SCT Journal Day +14 (AT HOME) February 19, 2009

Well Tom made it home this afternoon on Day +14. New stem cells only 2 weeks ago. I thought it rather soon, but I'm not the doc. His counts continue to rise. He's doing everything they wanted him to be or not be doing. Hope that makes sense. It does to me. He was sent home with so many meds, it's going to be a part time job for me to take care of that. I could post them later, but I can't remember now.

We must watch for fever of 100.5, any rashes, any vomiting, any bleeding, anything out of the ordinary. His nurse will start coming tomorrow and drawing blood and vitals. He visits the onc and clinic next Weds. He's rather glad to be home after 22 days in the hospital. I thought that rather good. He didn't do any walking today, but I told him one day off was okay. His eating is not great, but he is eating. They have given me a lot of suggestions for smaller meals and snacks and smoothies, etc. I know Tom wants to get better, so I think he'll be a cooperative guy at home.

He's very, very tired and said he feels cold in the house. We've upped the heat and he wrapped in comfie clothes on the couch. (Heck I'm very tired and cold too. It's only 20 here in Chicago.) I had my house cleaned twice thoroughly this week and want to say the NHL website is great for suggestions on preparing the house for the SCT patient's homecoming. Tom's SCT team wasn't that stringent about the hygiene, but I sure am. I'm erring on the side of caution as we don't need any infections or illnesses to deal with.

Tom asked me to personally thank this wonderful group for all the extra support and wonderful cards and prayers you have given us over this last few weeks. We know this journey is far from over, but we feel we've cleared at least one more hurdle. I promise to keep updating as the recovery from SCT is still a big deal. And especially an allo.