Jackie, Lea Dave, and Tara
Dave Park's SCT journal
Tuesday September 16, 2003 Day -6
It started today. We had to be at admitting by 8 am. We arrived feeling a little apprehensive, knowing this was the countdown. Dave says he actually feels the best he has since he was diagnosed. He says it is a really good physical and mental feeling he has. We were taken to his room (semi private room). his for 8 hours today. the BMT nurse was there and ready to start his PICC Line. She applied his freezing and removed the portable setup IV line, etc. Dave was glad to see that go. The timing was right too. The darn thing leaked pretty badly last night and this morning he had to shut it off completely and did not get his 7 am dosage of the Cefazolin. They decided it was no problem. NO more Cefazolin is needed. We then managed to have a conversation with most of the BMT team as they explained what to expect. The Pharmacist came in with her spiel, then the Dietician came to talk. We sure learned a lot today. Then Cheryl came back and got the PICC Line in and Dave down to X- ray. Blood work was drawn and Dave was smiling ear to ear. No more picking at him. The PICC Line works. He was actually pretty happy to have it this time.
He received his Decadron, Zofran and Allopurinol and more conversations. They explained how Beam was pretty strong and how they were really happy that they had managed to collect lots and lots of cells when they had done his harvest. Now they were not as concerned about giving him the large doses of Chemo. Finally after lunch they started his IV of BiCNU (Carmustine) They told him how this often had an effect on people. A supposedly alcohol effect. Again he says they lied. He felt fine. The only thing he got was a pretty red face, literally watched it turn pretty red. They said that was normal. They monitored his vitals, nothing big going on. Dave felt good and managed to tease several of the nurses, especially poor April who is 8 months pregnant and waddling as Dave called her the resident penguin. She is a sweet girl. All the nurses that remembered Dave came in to say Hi. We finally got out of there at 3:30 armed with a portable infuser of ARA-C (Dave calls it his stick of dynamite) and a bag of meds, and instructions on side effects to watch for and orders to return tomorrow morning at 8:30 am to get his Etoposide. We had a pretty quiet evening and got to watch Canadian Idol, and our choice won, "Ryan Malcom" sort of a Buddy Holly look a like. We have our first Canadian Idol. Dave took his Ativan tonight as he is pretty wired. Says he is not tired at all. We think Decadron may be at work there. Other than that he says he still feels pretty good. NO nausea, no fever, no problems. Again says he feels like he did before he was diagnosed. We sure hope that lasts, but we all know it won't. The doctors told him what to expect about a week after Transplant. Again they told him he will probably be admitted if they felt in any way he was getting sick, and again stressed that any time Dave or I felt that the Outpatient Program was too much. They would end it and admit him. Well, it is off to bed.
Wednesday September 17, 2003 Day -5
Dave really slept well. I had a hard time waking him this morning. He was so wired last night he took 2mg of Ativan and slept like a log. Actually he was pretty sleepy most of the morning. I think he really only woke up around 11 am. He says he is not taking any Ativan tonight. Today he received his Allopurinol, Decadron and Zofran. He received his bag of Etoposide and his bloodwork. His vitals were good. Blood Pressure was a little high 162 over 100. After we got home the hospital called to tell us he has been booked for a MUGA Scan. We have never even heard of that. It is booked for tomorrow afternoon and he has his Chemo at 9:30 am so we will be talking to doctor tomorrow about it. We suspect that it is being done based on his irregular heartbeat. He has had that for as long as he can remember. I guess they just want to make sure everything is fine. Dave is still feeling very good. Says again how he is loving how he feels. Today he actually ate a very large meal of his favourite seafoods. We had baked Atlantic salmon, shrimps and crab legs and a stir fry scallop and lobster and vegetable medley (served on pasta). I finally was able to cook his favourite meal and able to finally get this seafood out of my freezer. He made an absolute pig of himself. Wow. Decadron does it's thing. He figured he would eat it while he finally had an appetite(first time in over a month) and taste buds. He was warned that his mouth may get sore after Transplant and all that other nasty stuff that may happen. He is determined to enjoy this week while he is feeling so fine. He is also talking a lot, I mean a lot!! We are all enjoying him. This is so like the old Dave, and he just seems so happy and jovial. He is constantly cracking jokes and just seems to be HAPPY. It is pretty infectious. He is so making this treatment look easy. He keeps telling them he is going to defy their odds on when he ends up back in the hospital. He says he will be honest too and he will not hide anything if he starts to feel bad. WE WILL BEAT THIS!! Dave says HE HAS BEAT THIS!! Well we are staying positive and he has a Feel Good attitude that he says will continue.
Thursday September 18, 2003, Day -4
Today was a long and busy day. Dave was to start his treatment at 9:30 am, but there was a long delay and he did not start his chemo until just after 11:00. While getting his chemo, Etoposide, the floor gets a ph call wondering when Dave will be done, as he has a 1:00 app for a PMT test. some kind of breathing test. That one was new to us. I guess they figured Dave can be split into 3. As his chemo only stops running at 1:00 and he has already been booked for a MUGA Scan for 12:45 All these are on different floors of the hospital. Well, it was first come first served. He managed to just make the Muga Scan appointment. That one took 45 minutes and then we rushed to the PMT test. Spent aprox 25 minutes there and then back to Cancer floor to have his PICC Line dressing changed and to pick up more meds. Today he started on Septra. He is to take the Septra orally on Mondays and Thursdays and on Sept 21 he will start on Acyclovir. The Septra is to help prevent Bacterial Infections and the Acyclovir is to prevent Viral Infections. We managed to get all this done and in between all this running around we forgot Lunch. We finally got home at 4:00 and had a very early supper. We both crashed on the couch. You don't realize how tiring a day it can be when it is rush rush rush from one place to another. Tomorrow he is to check in for 8:30 am for more Etoposide. He is still carrying his portable infuser of ARA-C. Hopefully tomorrow will only be 2 hours and then home, but somehow we don't think so. I will be prepared. Every other day I always brought sandwiches, fruits, muffins, yogurt,,(the hospital food is not the best, we prefer to bring our own). but NO. today I said why bother, we could have lunch at home and return for the test.(we are only 10 minutes from the hospital). I guess we learned. We will always pack our extra food. Lord knows what kind of a clock the hospital runs on. Dave is still feeling very good and the attitude is hanging in WE WILL BEAT THIS! He has no nausea, no side effects. Even the itching has stopped, now that they have stopped the Cefazolin, and it looks like the Cortate cream is helping too. The rash is starting to go away. He says he feels pretty good. His appetite is unreal. Decadron, I am sure. It is actually nice to see him eat though. He has actually gained 3 pounds since Monday. He is staying on this positive high and we are firmly believing in the power of faith and support. We can feel it, Everything is going to be fine and Dave says again his goal is to walk for Cancer as a Survivor. We will walk. Heck We will run. if it is anything like what we had to do today. We are practicing already.
Friday September 19, 2003 Day -3
At the hospital for 8:30 am. Today Dave is just a little more tired. I had a bit of a time getting him to get out of bed. He moved from bed to couch. At the hospital he received his Etoposide. Still hooked to infuser of ARA-C. Vitals good. He complained about being cold. So he got to get some extra blankets. He slept through most of his treatment. Says today he does not feel too bad, but he does not feel as good as he had all week. NO temp, no nausea, good appetite , just a little tired. Everything still fine. We are preparing for what is bound to come. Dave and I are getting a little more nervous now. After the weekend it will be it. This week has gone so fast. Where did the week go? We just got the phone call to tell us he is to come back on Saturday and Sunday for 8:30 am both days. Then Monday at 1:00 for the Reinfusion. Wow. only a few more days. I actually feel sick to my stomach when I say those words, and I am not the one getting the SCT. I guess it is nerves on my behalf. Dave is staying positive and says lets enjoy the weekend, as he knows he will be getting to the bad stuff soon enough. WE WILL BEAT THIS! He says he is just happy to have gone through this week on a high and we will just go one day at a time, and stay on this high but on HIGH ALERT for any signs of fever, etc. That PICC line site is being watched like a hawk. Dave is being watched like a hawk. We have become the home of Mr. and Mrs. Clean and then some. Again he says he may move into the tub. .
Saturday September 20, 2003 Day -2
Today and tomorrow. That's all that's left. Wow. Today was his last round of Etoposide and he finished his ARA-C, so he happily got rid of his so called stick of dynamite. He was pretty happy to get rid of that. We had a pretty quiet day today. Dave is starting to feel tired. Looks like things are happening as they should be. He says he is just glad to say Let's get it over with. WE WILL BEAT THIS!. We are getting more and more nervous, but staying on top of it. He was pretty quiet today. Says he still feels okay, just tired. We were surprised to arrive at the Cancer floor today to find the double doors shut and a nurse sitting at a desk in front of the doors, She tells us they are back to screening for SARS on that floor. So we had to fill out the standard questionnaire and rewash our hands again with the antiseptic wash. It seems there are two cases of a serious Respiratory Infection on the floor, both are Transplant patients. The nurse says it is not SARS, but it is enough to scare us. She says that a team went through last night and tested all of the patients on the floor. Dave and I are concerned, esp. where he is only days away from his Transplant. WE are being extremely paranoid about cleanliness right now. We know we are now getting so close, and the closer we get the edgier we are getting. They kept reassuring us, but it is still SCARY. Please say some extra prayers for Dave, that he does not contract whatever it is that is going around on that floor, let alone contract any kind of infection, and we will pray that those that have picked it up get better soon. We were told the name of the infection, but forgot it. We will ask again, with pen in hand. Well, it is getting late. Dave's app tomorrow is for 8:30 am , so I best join him and hit the sack.
Sunday September 21, 2003 Day -1
Today was the last dose of chemo. He received his bag of Melphalan and started his Acyclovir. Dave is still feeling good but again he is very tired and he says he is starting to get that awful metallic taste in his mouth. He has been rinsing faithfully with the Biotene so we are hoping his mouth does not get too sore, even though we are expecting it. Dave has been sort of quiet today. Not really teasing or joking as he usually does, but it is understandable. He is pretty nervous, as I am. But we are staying positive WE WILL BEAT THIS! Tomorrow is the beginning of his new life. The team is pretty confident and feel that Dave is really doing well. They gave Dave the list of rules and side effects to expect. They gave him a nice pep talk. Again he says Dave may end up hospitalized within a week of the Reinfusion and Dave again says we'll see. Dave's vitals and blood work all fine. Nerves are a little jittery, but confidence is still there. He has slept a lot again today. We know tomorrow is the big day, but that several days afterwards is when he will really start to feel at his worse. We are prepared, the house is prepared. Well, it is going to be a quiet evening for us and as Dave says We finally get to sleep in His Reinfusion is not until 1:00 afternoon. Leave it to Dave to think of "sleeping in".
Mon Sep 22, 2003 Day - 0
HAPPY BIRTHDAY DAVE!
It was quite a day. Sort of exciting. Arrived at the hospital for 1:00, Now we have to wear masks at that section of the floor and all doors are shut. It seems that it is some kind of flu going around and they are not taking any chances as that section of the cancer floor is all Transplant patients. We were greeted with lots of Congratulations and Happy Birthdays. The team and the nurses are very nice and helped to make this a special occasion. He received 3 bags of his precious cells back. As he kept telling the nurses ""Bring me back my babies". We sat and chatted with the doctors and nurses while he was being Reinfused. There was such a relaxing atmosphere around us that definitely made things easier. Actually Dave's attitude really makes it easy. His humor was up and running and he was calm and relaxed. As he says this is the start of his new life, and now he is preparing for the uneventful side effects. Oh , and as soon as the Reinfusion started he got the famous tickle and dry throat and taste. He kept the ice chips and water going then. The SMELL, Yeach!!! He can't smell it and the nurses are use to it, but I have a super sensitive nose (makes up for bad eyes), well it sure gags me. Poor Dave, feels abandoned here, I have surrounded the living room with scented candles and I have been bad,, I am kind of avoiding him, not too close. He laughs and keeps telling me to give him a hug. .It must be love, cause I do, mind you I am plugging my nose when I do. Bless his soul, he understands, It's not personal. He is sleeping alone tonight for sure. Greg. I have just joined you and Dave and have now added Cream Corn to my list of foods I will not eat again. Not a pleasant smell, but it is a small price to pay for what it is doing for him. We are so Thankful for having been able to come this far and know the WE WILL BEAT THIS THING! Thank you all for the prayers, the support and just for being here for us. We now know we will be entering another fight, but it is DO- ABLE. and Dave is a fighter!!! Prayers and Hugs
Tuesday September 23, 2003 Day +1
Today was a short day. Blood work, vitals and PICC Line site cleaned. Dave is getting more and more tired, but still positive. He says his energy level is dropping fast. His vitals are all good and his appetite is still good. So far a pretty good day. He still smells bad though. He is putting up with the teasing. Now it is his turn to be teased. . Says it's a good way to watch people take off. Poor Tara, our daughter, felt a little guilty last night. She went to spend the night at a friend's and Dave Said " What, Do I smell that bad that you have to leave the house" She said, "Well, it's not really that bad". cough cough. I chose to sleep in another room. Oh, well it is not as bad today. We are getting used to it. The important thing is Dave is now halfway there. No(our w, he plans on proving the doctors wrong and says he will last longer than the week they predict. (for admittance). WE WILL BEAT THIS THING! Thanks again for the prayers and support. And, Come on IS THERE ANYBODY OUT THERE WHO LIKES CREAM CORN
Wednesday September 24, 2003, Day +2
Dave did not sleep well last night. Timing was off, he ended up with Diarrhea, so he spent most of the night in the washroom. We got to the hospital for his 8:30 am appointment. They still have the mask thing going on at that section of the Cancer floor. Those masks have got to be the most annoying thing to wear. I wear glasses and they steam up with the mask on. But if it is to protect myself and others I will put up with it. They gave him Loperamide Hydrochloride for the diarrhea (It seems to be working) Also gave him a vial to bring back samples tomorrow. Looks like his vitals are good, count going down, but not bad, as per nurse. She went to get the counts for us, but forgot to give them to us, so we have no numbers. NO temperatures yet. He is very tired though, says he is having a hard time to stay awake and energy is almost nil. About an hour after we got home from the hospital Dave vomited. There was no warning, Just blew his nose and ended up upchucking. Says it was pretty weird. He did not feel nauseous and he has only had the one episode. The rest of the day he was fine. He started taking the Stemetil just to stay on the safe side. The Diarrhea is under control now also. He even managed to eat his lunch and supper with no problems, other than not liking the taste. The bad taste is back and he keeps rinsing. As for his Cream Corn smell, it is either gone or we have gotten used to it. So far all has not been too bad. Dave says he does not feel too too bad, He's felt better and he's felt worse. It just seems so strange to now be on this side of the SCT. Well, he has gone to bed, says he needs his beauty sleep. I won't be too far behind him. Thanks all for being here and believing with us that WE WILL BEAT THIS! We are now on the other side of the road. The fight is just beginning.
Thursday September 25, 2003 Day +3
It looks like Dave is starting to experience the Chemo side effects more and more. His Diarrhea started back up this morning, along with throwing up again. no warning again on that one either. Says he was just checking his mouth in the mirror when bango he upchucks. Also his tongue and mouth is developing a white coating. He is still very tired. Today they gave him more Imodium, and advised he start taking the Metoclopramide and Benadryl for his nausea. They told him it is beginning. Also he is developing another rash. Looks like the Acne thing again. Strange part about that is last time he got that type of rash he was on the Decadron. This time he got it after the Decadron, but as they said it is not uncommon to get rashes with the Chemo he was given. And he has a red area (sore) forming up high on his arm along the PICC Line. No infection is suspected. We are to apply the cold packs and keep an eye on it. They also give him 24 to 48 hours and he should be starting a fever. They wanted to give him a jump start with another antibiotic, but changed their mind due to his reaction to the Cefazolin and will hold out until the first sign of fever. So far he has been maintaining at 36.8 average. A 38 temp will do it. So everything is looking good there. They will admit him then, and administer the higher antibiotics in the hospital when the time comes. He is to continue with his Septra every Monday and Thursdays (preventative) and his Acyclovir every day (also preventative) measures. Continue his Ativan, Metoclopramide, Benadryl and Imodium. He is getting very very tired, but still managed to joke with the nurses and the doctor. Their comments were." Looks like Dave is still in it, He's not letting it take him down". That's Dave. His Blood counts are dropping. We don't have today's yet, but we did get yesterdays. Note . these are Canadian standards
White is 0.6
Again those were yesterdays, We know they have gone down more today. Dave is still determined to get beyond all this and he is still staying positive. We are definitely seeing the slow down right before our eyes. Like he said. His mind says one thing, his body says another. He can't wait until his body starts to agree with his mind.
Friday September 26, 2003 Day +4
Well, Dave is slowly going down in energy. His energy level is pretty low, and he is vomiting more. He still has the Diarrhea. Says he feels like crap, literally. Today they cleaned his PICC Line site and checked his arm. The redness and soreness is starting to go down with the ice pack being applied. He is getting pretty cranky about applying it too. When I approach him with the gel pack, he gives me the cranky look, but I choose to ignore it. He does the same thing when he sees the thermometer coming. I ignore that too. No temperatures. Still maintaining an average temp of 36.8. Pretty normal. He is now sticking to more liquid and soft food diet. I mixed his jello with a Resource Juice mix (high in proteins and nutrients). Also made a nice home made chicken and vegetable soup. Sprinkled powdered Resource in his bowl of soup. I am adding it to his water, also. The stuff is all proteins and it has no flavor. It does not change the flavor of his foods or drinks. The hospital is supplying it for us. He managed to keep half a bowl of soup down. He is also drinking Boost and eating ice-cream, drinking lots of water, and orange juice. The doctor told him not to worry about losing weight right now. The important thing is the fluids and to make sure when he does eat it is nutritional. So far he is doing that. He is determined to eat and drink healthy. It is a battle. He is now on the Benadryl and 2 Metoclopramide tabs every 4 hours to help with the nausea. It looks like that is starting to help. He has not vomited since after lunch. He is also on a snack at will schedule. NO set time for eating. Try solids if he wants, but do not push it. His Diarrhea is slowing down a little. (Not a whole lot left to pass). He is taking his Imodium. It is looking like he will more than likely be admitted by Monday. I asked him today if he was ready to be admitted today and he said no, not yet. He knows what's coming and says he will definitely accept the admittance then. Monday is not confirmed, it is just when we figure he will hit the bottom. We received his counts from yesterday
White .2 Haemoglobin 113 Platelets 45
Tomorrow's hospital visit is for 10 am . They will let him sleep in a bit. Again he will be well looked over by Dr Huebsh (the lucky one working the weekend). We are managing to get him to walk at least around the house. Between the upstairs bedroom to bathroom to the main floor couch to bathroom to the basement couch to bathroom several times a day. It is some exercise. I think our dog is beginning to think Dave is losing it. She follows him everywhere and sits and sleeps at his feet. I think she's getting fed up with it though. A few times she gave him the "look" as if to say "Aww, you have to be kidding". He is finally settled in bed for the night (has been since 9:30 pm. I know we have been preparing for this and have been told what to expect, and we know WE WILL BEAT THIS, but it gets harder every day to watch him. Dave was always so energetic. It is hard to see him this way. It sure has been one heck of a year. Here it is, it will soon be October. and that is when this basically all started. Sinus Infections. If only it was just that back then. I guess we have to look at it this way. With this being as aggressive as it is, Dave has always managed to beat it back and he will beat this part of it also. Looks like we are in need of some hugs and prayers ourselves.
Saturday September 27, 2003 Day +5
We had a long, long night last night. Neither one of us got much sleep. Dave was up most of the evening. I think he spent more time in the washroom than in the bedroom He did not keep his breakfast down either. About a half hour after bringing it up he took the Stemetil . We waited another hour and he had half a banana, small glass of milk and a little bit of applesauce. He managed to keep it down. Mind you he passed it via Diarrhea. He has lost 7 pounds since Monday. His throat is sore, and he is having trouble swallowing. They started him on Fluconazole (liquid) and gave him liquid Morphine (5ml) to take every 4 hours as needed. He is still drinking lots of fluid. but because of the Diarrhea and the throwing up they gave him Potassium Chloride to hydrate him. That seemed to have perked him up a bit. They also gave him Platelets and tomorrow they will be giving him Potassium Chloride again. His temp is slowly climbing He has been in the 37's all day. He has not thrown up since breakfast and he has been eating very lightly. He kept down jello (fortified with proteins (Resource), Ensure, ice-cream, orange juice and water. So far so good. And he has only run to the washroom twice (for Diarrhea) since this morning. Looks like the steady diet of Metoclopramide, Stemetil and Imodium is working, or it could be that he has not got a whole lot of solids left to pass. His Counts are now at Whites .1 Haemoglobin 100 Platelets 20 If his Haemoglobin goes below 90 they will give him blood. we suspect that will be tomorrow. We were at the hospital for 6 hours today. When we left he felt better, but it looks like things are going down again. He says his mouth is a little more painful, and I just took his temp and it is 37.6 The highest today and getting a little too close to 38. I am calling the hospital right now and I will post later. Thanks for the prayers and support. I believe we are in for another long night.
Sunday September 28, 2003 Day +6
Well, Dave has been admitted. His temp did go down to 37.4 and stayed that way most of the day today, but went to 38 around 6pm tonight. They started him on more Hydration. I don't remember the name of it, I left the journal with Dave. He is not keeping anything down now and his Diarrhea is not letting up. They also started him on Piptazo, Tazocin. They increased his Morphine to 10 ml every 4 hrs as needed, and every 2 hours if need be. When I left tonight they were talking about applying a morphine patch. His throat really hurts when he tries to swallow or talk. He is very tired, and feels okay about being admitted. Says he's ready. He is better off there now, with his not keeping things down it was definitely time. His arm is looking better too. The redness and swelling is reducing and he says it does not hurt anymore. The ice pack helped that. It was not an infection in the PICC Line thank God. tomorrow they will start his Neupogen. The doctor says Dave is doing well, better than they expected. He has handled things well and now the train is hitting, Dave gave it a rating of medium size train. He knows to expect all this, and says he will BEAT THIS, too. HE WILL! His counts this morning: White below 0.1 Haemoglobin 120 (it went up ) Platelets 27 (also up since yesterday) I want to say a special thank you to all of you for your special notes which I relay to Dave. The support we are receiving is definitely appreciated. I would love to thank all of you individually, but I know there is no way my fingers will type anymore. My brain is slowing down. I am very, very tired right now, and I guess a little stressed out. I am heading to bed, where I hope I finally get a full night's sleep. I will, I am having a hard time keeping my eyes open now. Thanks to all of you again. The prayers are doing it.
Monday September 29, 2003 Day +7
Thank you all so much for your many kind words. Dave and I really appreciate them. I did manage to go to sleep within an hour of last night's post. I was up by 6:30 am. ( I don't sleep long, but last night I slept heavily. Dave says his night was pretty rough, but he feels a lot better than he did yesterday. He is still throwing up some things, He sometimes manages to keep down some juice, and water. It is just one of the chances he takes when he tries to eat or drink. The doctor mentioned a feeding tube. That did not impress Dave. But first he is going to try other Anti Nausea meds via the IV and see how Dave does. He still has the Diarrhea. They are keeping him well hyrdrated. He is receiving the Pipercilin and Tazobactam every 6 hrs (IV)with anti nausea med every 6 hours, Lots of Sodium Chloride, Acyclovir, Septra, Neupogen, Fluconazole, Imodium, Benadryl and Tylenol before the blood transfusion. His temps are staying at the 37.4 range, He is a lot more alert. We even walked the corridors several times today. He looks good, his counts this morning were (Remember metric)
But Dave seems to be better, it is strange. They were concerned that maybe there was an error in the blood count, so this afternoon they ran another and his counts were even lower.
They gave him 2 units of blood early this evening and he will receive Platelets by tomorrow morning. I don't know what to think, except I am thanking God. Dave just seems to bounce back. WE WILL BEAT THIS!!! He says his throat does not hurt as much, says it is actually bearable, He turned down pain meds, and he does not look or act like he is in any pain. He even seems to be more energetic. He was actually edgy. Says he is ready to go home. We are wondering now if it might be a side effect of the meds. Do people really bounce back that fast with their counts that low. Since he started the Piperacillin and Tazabactam , it seems to have helped IMMNENSELY. The biggest problem he is having now is the throwing up and Diarrhea, and he wants to come home. Again thanks for the support. I am off to bed. Your prayers and faith help us, It means a lot.
Tuesday September 30, 2003 Day +8
Today was a better day. NO more vomiting, just a pretty queasy stomach. Was able to keep down water, juice, yogurt, applesauce. He tried Mashed potatoes, was a no no. Still has Diarrhea, but it is getting better. That heavy energy he had yesterday, finally panned out this afternoon. He did do some walking this morning, but by 2:00 afternoon he had enough. He pretty well zonked out. Slept through most of his Platelets infusion. Almost slept through supper. Did get up for that, unwillingly. But he managed to get down a glass of juice, a small bowl of canned pears, and some yogurt. He ended up going back to sleep after supper. I left around 7 pm, He was sleeping quite soundly. It gave me a chance to get some errands done, i.e. groceries, etc. NO FEVERS TODAY, at least not when I left. Counts today: Whites < .1 Hmglb 98 Platelets 16 They had to give him platelets today and if his Haemoglobin drops below 90 they will give him more blood. He is still receiving Piperacilin/Tazobactam every 6 hours , Neupogen, Acyclovir, (Benadryl and Tylenol prior to infusions). Pantoloc (IV once a day to help prevent reflux), Maxian IV every 6 hours. Metoclopramide every 4 hours, Imodium (max of 8 tabs a day). Morphine as needed. 10 ml (Only received it twice throughout day. Fluconazole once a day, Lots of Sodium Chloride, Ativan for sleep at night and he is rinsing his mouth constantly. Dave and I both admit he is in the right place right now, even though he says he wants to come home, he knows he will not push it, he is ready to continue to fight and BEAT THIS THING. Says he will use today as a rest day. Says the bed is comfortable, then on the other hand he says ""I must be sick if I think a hospital bed is comfortable". He manages to get that humour out, even in his sleepy state. That's MY Dave. Yesterday he was cranky and ready to do battle with the TV tech (story in itself) and also battle his beeping pump. Every time he moves his arm the thing goes off. Yesterday he was ready to throw the thing. Today he is calm, relaxed and now says he hardly hears it anymore. Arrggghh. I just hold my hands up and say I give up. Our jaunts down the hall yesterday were fast. Dave had a mission. and I was the one who ended up talking to the TV tech and the nurses about his beeping pump. They readjusted some tape on his PICC LINE. It helped. He actually ended up with getting his site cleaned twice in one day. And Mr. Innocent says what, me grouchy. . I am so thankful for this strength we have both been given to battle this. It is DO-ABLE and we are so grateful for the EXCELLENT SUPPORT and the PRAYERS. RUSS, you are amazing with your info. THANK YOU, THANK YOU. I print up everybody's notes and they go into the folder for Dave to read. Prayers and Hugs to All Tomorrow will be an even better day.
Wednesday October 1, 2003 Day +9
Another good day. The only thing he needed today was Potassium. His was down to 3.5. But no platelets and no blood. He is still dealing with the nauseous stomach, but not vomiting. Still no solids, He again tried but the stomach flipped an he got ready to run He did manage some oatmeal, yogurt, fruit cup, Resource Juice, applesauce, and water. I have been dumping the powder Resource in all of his food and water. The dietician was in to see him and has ordered up lots of nutritional drinks and he is to eat a little of something throughout the day, never mind meals. His throat is still a little sore, but he says it is manageable. Only got Morphine once today. The Diarrhea is still an issue. He is still taking the Imodium. Same meds as yesterday. Only thing added was the Potassium. Today's Counts White still below .1 Haemoglobin 95 Platelets 25
He is still in a very UP mood. We walked those corridors forever today. I think he signed us both up for some Marathon. A few of the nurses commented that if he keeps moving that fast he was going to get dizzy or they were. His comment was he keeps trying to turn to the elevators OUT, but some stupid beeper keeps him prisoner. Mr. Gung HO and Raring to go finally lost that energy boost again by 3:00 and then he napped. He managed two rounds around 7 pm and decided to settle in . His temp was 37.6. Up a little to what it had been all day. It will be watched. AND Russ, the cold you talk about, It is so true. Maybe that is why he keeps on moving, to warm up. He must have piled at least 10 flannelette blankets on the bed, Has his t-shirt, Fleece jacket, jog pants, socks on and he buries himself under the blankets. As for the air duct it is under the window. A very large window seat type of affair that blows the air up. Well Mr. Ingenious got a sheet, borrowed (nice way of putting it) some surgical tape and taped it right over. We have one end opened as the sheet tends to really blow up and there goes the tape. We have piled pillows, books and more sheets on that. His orders to me was to bring back one big piece of wood from his shop, his nail gun, and his words "We'll nail the sucker shut", and then we'll hire ourselves out to the other patients and nail them all shut. So yes, his humour is still on. When I left the temp was at 37.6, his throat was starting to get sore again, and he was saying he was getting some pains right at his tailbone. HURRAY!!! I think the Neupogen is starting to do it's thing. We have to remember it will be a GOOD PAIN!!. He was not so energetic, but I know he will be fine. I am hoping to come in tomorrow morning and find his White Count has started to move. I am getting ready to hit the sack. I do feel things catching up. It is like a roller coaster. Up, down, upside down. Every which way. We never seem to know from one day to the next what to expect anymore. All I pray is they get back on the Upswing and stay there.
Thursday October 2, 2003 Day +10
Hurray!!! Dave's white count was .2 It is beginning. No sooner did he get the news he decided to vomit all over his bed, floor and the bathroom when he finally made it there. He was pretty shocked on the vomiting. It has been a few days. And this bout came with absolutely no warning. It only happened the one time today. hopefully not again. He thinks, and we tend to agree, it may have been the Ensure drink. He has not had any in a few days, Each time he has he has vomited. So, no more Ensure or Boost drinks. It's wierd, because he has no problem with milk. His news was fantastic though. He is determined that it will be even higher tomorrow. He did receive 1 pint of blood and also platelets today. His counts today were Whites .2 Hglb 93 Platelets 17
We did more walking today (not quite as much as yesterday, but still more than enough. The Doctors told him today he was not Superman, but he was one heck of a Tough Man. He says HE WILL BEAT THIS and he is proving it. His throat is still sore. He rinses and brushes constantly and now he has been given a spray called Moi-stir. It helps dry mouth. He also has been put on the Fentanyl patch with Morphine as needed. He is determined not to need the Morphine. He also received more Potassium (still down) and some Magnesium. He is also still on the Piperacillin/Tazaobactam, Sodium Chloride, Pantoloc, Maxian, Neupogen, Acyclovir, Fluconazole and Septra. He says he feels pretty good, a little tired at times. His butt is getting a little sore. He was given Tuck wipes, Sitz bath, and some ointment (forgot name). The Hemorrhoid is external not bleeding. So, today has been another good day. and again Tomorrow will be even better. We will keep praying.
Friday October 3, 2003 Day +11
Today whites are .5 They are moving right on track and he's feeling good. Received another 2 units of blood today, Still on same meds as yesterday, except he did not request any Morphine. Says throat does not hurt. The patch seems to be enough to do the trick. NO more Diarrhea, but still vomiting, morning only. We had another really good day. We continue to walk throughout the day, but by afternoon the pace slows and he naps more They have added another band on his arm this one is red with the words tape on it. It seems he is starting to react to the tape they have been using on his arm where the tubes come out of the PICC Line. They are to use paper tape only. Dave says he feels good, tired but good. Says he is ready to go home, but he will not push. The food intake is still low, he is trying though, but any type of solids and some liquids turn his stomach. That will improve we know. He plans on doing everything he is told, as he plans on BEATING THIS and he figures the more we walk the better he will feel. The doctors and nurses just shake their heads and tell him to keep it up. He is doing the right things. If this continues he will receive a couple more Neupogen shots, taken off the Piperacillin/Tazobactam shortly thereafter and be allowed to go home with 5 hour days passes, then gradually be put back on the outpatient program, coming back every day as before for blood work, etc. We are all going one day at a time and each day gets better and better. We really, really feel we are BEATING THIS! Dave says tomorrow he is going for at least a 2 point count. He is also commenting on his hair. Says he doesn't know if it is coming back or falling out. There is nothing there, except a few little nubs here and there. Asked me if I should make an app for him for a haircut. He's starting to have too many bad hair days. Leave it to Dave.
His counts today were: Whites .5 (.3 more than yesterday) Hglb 88 (received 2 pints of blood today) Platelets 38 (almost doubled from yesterday) Potassium 3.0 (still receiving Potassium and Magnesium)
We are feeling good emotionally and physically today. Tomorrow is going to be an even better day.
Saturday October 4, 2003 Day +12
We are home. They let Dave come home this afternoon. He feels great, but we understand to keep a tight reign on the bacteria watch. He is back on the outpatient program. We are to return to the hospital for 9 am tomorrow for hydration (cut down 60 percent), more antibiotics, potassium, and blood work. The doctors and nurses have been really impressed with him. He is throwing them off. The walking around constantly especially does it for them. I mean, We really walked those corridors a lot. That is one of the reasons they let him go home today. He says he honestly feels good and again, it helps that we are only 10 minutes from the hospital. If we need to get back in a hurry, it is close and we never have to go through the ER. Because of the Out Patient Program, we only have to call the 24 hr BMT number and tell them we are meeting them on the 5th floor (Cancer floor). They will have someone meet us and they will get him a bed. He received his last Neupogen today. Received his last dose of Piperacillin/Tazobactam today, Last Acyclovir and Fluconazole. He is to start 1 tablet of Pantoprazole 40 mg tomorrow am. He is to continue with Metoclopromide and the Fentanyl patch. Counts today. They are climbing. HURRAY! Whites 1.5 Hglb 107 Platelets 25 Potassium 3.3 Dave's temp as of 9:30 pm 37.1 Only problem he just vomited again. This is the second time since he got home. He vomited before supper and just now.(9:30 pm). There is no warning with these episodes. He says he does not feel bad, but he also agreed that if this is to become a problem he knows he may end up back in and he is willing to go, no arguments. He has settled into bed for the night. Took a Stemetil and an Ativan. He says his bed feels so. .good and no cold air duct to fight with. Tomorrow, will tell on what they will do with the vomiting issue. Other than that, he says he feels good. I guess we will continue on this ride. WE WILL BEAT THIS. Prayers and Hugs.
Lea and Dave P.S. Greg. Dave says Darn it, he was having a bad hair day today! Sound familiar. Says he will try it again tomorrow. I have to buy him Herbal Essence shampoo he says. Have you ever seen their commercials? LOL
Sunday October 6, 2003 Day +13
Hurray!!!! Dave's WBC this morning was 5.6 Double Wow!! It was a good feeling day emotionally. We are holding out for a bigger tomorrow. We know not to get too excited. Today he vomited several times again, and he did not eat much. So far his Diarrhea is still no longer a problem. He is very tired today, He says he does not feel as good as he did yesterday. He slept a lot today after we got back from the hospital. Temp maintains between 37 and 37.3 as of 10 minutes ago. He does not have a fever, just tired. He is off to bed, where I am heading shortly. We have to be at the hospital for 8:30 am tomorrow morning, where he will be receiving more hydration, his bloodwork, Platelets, and his Ceftriaxone injection. Tomorrow morning he is to take his Septra, Pantoprazole, and Metoclopramide. The rest of his counts : Whites 5.6 UP from yesterday's 1.5 Haemoglobin 126 UP from yesterday's 107 Platelets 20 DOWN from yesterday's 25
Here's hoping they fly from here. We know WE ARE BEATING THIS THING, mind you today Dave seems to be feeling a little less energetic which we expected. Hopefully tomorrow brings a little more energy and appetite. He is still drinking a lot and still walking, although today his walking was not quite as much as it was yesterday. Actually, I am pretty tired myself. I think things are starting to catch up. I guess I should head to bed myself. Thanks all of you for the prayers and support Prayers and Hugs
Monday October 7, 2003 Day +14
Two weeks ago today. Hard to believe. And as a present Dave gets to have a day of rest tomorrow. Today he received only 500 ml of Hydration, his Ceftriaxone, Septra and Platelets. His count on Platelets was down to 15. He only returns on Wednesday for blood work. Unless something goes on between now and Wednesday. They have taken him off the patch so far no more pain, Taken him off Antibiotics except Septra which he will take every Monday and Thursday for approx 6 months. Taken off the Metoclopramide, but if he feels he needs the anti- nausea meds, he is to resume it. He still has a supply of those and Stemetil to take as needed. He also was taken off the Ceftriaxone. Only med left is his Septra and the Pantoprazole. The Pantoprazole is once a day. He is to continue with the Ensure, Boost and Resource products and slowly try semi solids. He is still vomiting a couple times a day. It is possible that it could be a side effect of some of the meds he had been on. He is hoping that once the Antibiotics are done it will help him feel better. He tends to think the same as Greg, that once they are gone, the good feelings will be more plentiful. He is still pretty tired, but knows that it is part of the package. We are still walking, though, not as much as the hospital. I think he is too relaxed at home. He deserves this little rest break. The hospital was incentive to walk, I think he was so restless there that he just had to prove to them that he was going to do it. They told us his counts may drop a little for a few more days, but then the Stem Cells should start to take over. His counts today:
Dave and I are both so happy to see him on this side of the road. We KNOW HE HAS BEATEN THIS!!!! and we know that we did it with FAITH, and LOTS OF SUPPORT and PRAYERS and the ADVICE. Thank you Everybody. You have all been there for us and we really appreciate it. Tomorrow his rest day, we will rest, We want to just sit back and enjoy this freedom day, We know eventually we will have more of them and for now they will be short, but just the fact that he CAN have a FREE DAY is more than enough to Thank God for. We now know that it IS very DO-ABLE. Dave says he feels that it definitely was worth it for him to do this.
Friday October 10, 2003 Day +17
Dave is still at it with the vomiting and the Diarrhea. It really does not look like the Metoclopramide is working. He manages to upchuck those. He is stll doing well otherwise. He even asked to go for a walk today, twice. It was a beautiful day, and we took advantage of it. He is still losing weight, but still drinking. And he is eating the yogurt. He really does try to eat.
His counts ae going up HURRAY!! and on their own. The Stem Cells are doing their job:
Whites 3.5 up from 2.3 Haemoglobin 119 up from 118 Platelets 28 down from 30
His PICC Line started to get a little sore at the site and getting a little hard spot and red (at site). They cleaned it today and applied the MeSalt. Also took a swab of it. His temp is still normal, so no problems there. The doctor said if his Platelets continue to maintain a good count, they will remove the PICC Line. They do not want to take any chances of another Infection like before. Dave is fine with that. He says if they have to continue to pick him for blood or platelets or whatever. He does not care. If there is a slight chance of another infection in this PICC Line then get rid of it. The doctor talked a bit about how the vomiting and Diarrhea should have been easing by now, but it is not uncommon. He is to continue trying to eat, just a little at a time, and drink lots. Continue the Imodium, Pantroprazole, Metoclopramide and ice on the PICC Line. Dave says he still does not feel too bad, He gets burst of energy (short lived) that is when we take the walks. He also gets tired very easily. Tonight he was in bed for the evening by 8:30 pm. He is still stating that HE HAS BEATEN THIS THING, just that he needs these power naps for now. .He does and he deserves them. It is tiring for him to keep running to the washroom. He gets so frustrated when it happens. He really wants to stop losing weight, but it takes time. I guess today he was having a bad day. The PICC Line is really scaring him too. I know they will remove it tomorrow.
Monday October 14, 2003 Day +21
Well it has been 3 weeks and It is Thanksgiving Day for Canadians. We have a lot to be Thankful for Today. Our great news of the day. Dave has been discharged from the Day Care He has been moved to twice a week visits to the BMT clinics for bloodwork and check ups. The clinic is on the 2nd floor of the hospital versus the Day Care on the 5th floor. His counts TODAY were:
Whites 5.2 from 2.9 on Friday
He went through the weekend not needing any hydration, blood or platelets. Everything went well. He even managed to finally start on some solids. On Friday he ate eggs. Sat he ate more eggs. Sunday, we had our Turkey dinner, He actually ate some Turkey, mashed potatoes, carrots and gravy. Albeit a very small amount, but he ate it. He said if he had eaten any more though, he would have brought it up, so he quit as soon as the feeling came upon him. But There has not been any vomiting or Diarrhea since Friday. Now we work on increasing his calories, protein, solids and Potassium. His Potassium is down to 3.0 and he lost another 2 pounds. I made an interesting shake for him today. Strawberry Ensure, vanilla ice-cream, strawberry/banana yogurt, and a banana and 1 large scoop of Resource powder. He tried to eat Turkey tonight for dinner but he gagged and couldn't do it. That's how he ended up with the shake. Says he can't handle the texture of the food. Doctors say that it will get easier. Sure hope so, because it really bothers him mentally. We are grateful and thankful to have come this far in this and Dave says it is really not that bad. He would do it again. If it saved his life, he has no qualms about dealing with the side effects, etc. that he has dealt with. It does get better every day. We are very happy with his progress, and the doctors are happy with the progress. The PICC line is gone, his arm does not hurt anymore. We are on the road and no looking back. Every day now is a new day in his (Our) new lives
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