10/31 -back to IPOP

It's been a long day everyone -went over to IPOP at 9:30 a.m.  Don needed hydration because his blood pressure was low (again).  The diarrhea has subsided but still the lack of sleep is keeping him down.  Not too much new to report - hopefully tomorrow will be a better day - much better.  I know once Dad starts to get his energy back our days will be much better; but until then they're not so good.  Trying to stay optimistic - it's hard at times.

Keep the prayers coming - we need and appreciate them all.

Love you all.

Don & Muffin

10/30 - Releasing Don from 5B - yippee!!

Nurse came in around 11:30ish to say they were doing paperwork to release Don.  Not sure what time but hopefully soon.

I got here this morning around 9ish - Don had eaten all his eggs - thought we had ordered pancakes also but he said they weren't on the plate - hmm - maybe someone got hungry before delivering plate to him haha - not really.  Was happy he ate the eggs and he said they actually tasted like eggs - great!!!  Got here in time to see Dr. Fuchs and his colleagues.  Said everything came back negative - so with diarrhea and temps under control they are letting him go.  We will go back to IPOP tomorrow.

Don is taking this anti-fungal medication because of spots they had detected early on his lungs.  Nurse said his liver enzymes showed they were up but this could be from this medication - great huh?  First time anyone has ever mentioned liver enzymes.  Said they don't want to discontinue medication but she will make sure IPOP tests for that tomorrow and if still elevated they could possibly change the medication.

Bri, Louisa and girls are coming for a visit so we are thrilled about that.  Not sure what time yet but we will see them at the apartment sometime later. 

Okay - it's 12:00 noon so just waiting to be told when we can leave.  I will be back to write some more later.

We got back here around 2:20 - Don layed down for a bit and then Bri, Louisa and kids came.  We played dress up doctors with everyone wearing a mask and gloves.  We just thought we wanted to take this extra precaution with Don just getting home.  The girls didn't mind it at all and kept them on the whole time :).  Had a wonderful visit for almost 2 hours.  Don is going to lay down and I'm going to take a 7-11 trip and get some Popeyes chicken for dinner - I'm so hoping he can eat without a problem.

Went to 7-11 got chicken.  Don did pretty good.  Had few pieces of chicken, mashed potatoes and green beans.  Not alot - but enough that I can say he had more than a little bit but not quite alot.  He's so exhausted.  Guess after his recent stay in 5B it's going to take awhile for him to get any strength back.  But - I hope it's soon.  He's going to lay down a bit.  He has medication to take by 10 and then he wants a pill for sleeping.

Okay finishing this up now - Don took his medication and will be taking his sleeping aid soon.  Hope it works and he can get some good sleep tonight.

IPOP visit at 9:30 a.m. - the Nurse today tried for later but this was the latest they had.

Keep the prayers coming - we need and appreciate them all.

Until tomorrow.........

Love you all!

Don & Muffin

10/29 - A Better Day!

10/29 – A better day
Posting the email I sent to the kids today:
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Okay - not sure if I told you all this or not but Dad was sitting up when I got here around 9:15ish - he hasn't done that in awhile so I was happy to see that. He had tried to eat the French toast but I think the syrup is sugar-free or low fat or something but anyway, he didn't like it at all. I asked if he wanted a banana but he said he would wait to see what lunch brings. At least he is thinking about food which is an improvement.

Dr. Fuchs came - said they were still waiting on the biopsy from the colonoscopy. Did mention possible lymphocytes in stomach could be causing the diarrhea and temps but frequency of diarrhea has really gone down and temps are stable right now as well. They also mentioned the GVHD again but said let's just wait to see if the colonoscopy shows anything or not. Dr. Fuchs said they are hoping for a release to IPOP soon - now wouldn't that be sweeeeet!!!

Lymphocytes: A small white blood cell (leukocyte) that plays a large role in defending the body against disease.
Lymphocytes are responsible for immune responses. There are two main types of lymphocytes: B cells and T cells. The B cells make antibodies that attack bacteria and toxins while the T cells attack body cells themselves when they have been taken over by viruses or have become cancerous. Lymphocytes secrete products (lymphokines) that modulate the functional activities of many other types of cells and are often present at sites of chronic inflammation.
Guy came to clean room and got his bed all nice and made with clean sheets and blankets - while doing this Dad did a few laps in the room - great!!! Getting the circulation going for sure. I will make sure he does this after each potty run!!

Nurse Don just came in - said the doctors had said they wanted to increase Dad's fluids but he told them he has been drinking and they said okay they wouldn't increase them right now but would still give him fluids. Nurse Don wants us to monitor how much Dad is actually drinking - he's hoping if it's enough during the day he can suggest stopping the fluids altogether. Dad wouldn't mind that at all - believe me!!

Counts - yesterday's first then todays:

White blood counts - 5570 - 4540
Red blood counts - 2.92 - 2.91
Packed cell volume - 25.4- 25.2
Platelets - 178 - 227
ANC - Neutrophils - 2180- 1990

I asked about the #'s taking a downward trend - they said nothing to get alarmed about - the #'s are doing great so I was happy to hear them say that.

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12:55 p.m. – Kemmie came in to take his temp and blood pressure – both good!!
Lunch came – he had a few bites of turkey from turkey sandwich and few bites of orange jello. Nurse Don did notice he was on low fat diet – he talked with someone and they decided to put him on a regular diet. I think the regular diet definitely has more flavor. Doesn’t mean he’s eating any more of it – but maybe tasting a bit better.

Took a few hours for Nurse Don to come back in – Don and I were talking how he’s nothing like Nurse Taryn. She was in here nonstop during her shift.

4:15 p.m. – Kemmie came back and again blood pressure and temperature good!!
Such a relief having the temperature being good – let’s hope tonight it keeps the same good pattern.

5:00 p.m. – Nurse Don came to just check and to ask Don if he could do anything for him. Guess we shouldn’t be thinking he’s slacking – just comparing him to Taryn – no comparison.

6:00 p.m. – Don ate a few bites of roast beef and mashed potatoes. He says he has enough when the food starts tasting like cardboard – oh goodie – sounds good huh? Unfortunately he only gets a few bites in and that starts. I told him I was worried about his eating – I wonder if he will ever get his appetite back and I know once we get released I will be challenged with what to even fix him to eat. Guess we’ll cross that bridge when we come to it. It could happen SOON though!!

6:30 p.m. – Oh wow, Nurse Don came again to ask if there was anything he could do for Don. Maybe we were too hard on him earlier – maybe.

I just realized at 11:30ish tonight we will have been here for a week – sure seems a lot longer than that . :( Oh sorry – told myself no sad faces.

7:25 p.m. – Blood pressure was good but temp was up just a bit – it will, of course, be taken in a couple of hours.

Nurse Don came in to say he was leaving – he indicated there was a good possibility Don could be discharged tomorrow. Normally I would be totally thrilled about that – but #1 they have not gotten the results of the colonoscopy biopsy, #2 the temps continue to creep up later in the evening and #3 he still doesn’t have much energy. So like I said, I want to be happy he gets released so we can get on with the program but with all of this I just don’t know.

8:30ish – new Nurse came on duty – Karen. Very nice lady. She checked Don’s breathing, checked his throat – checked for swelling. She said he looked good. Told Don if he needed something for sleeping to please let her know. Don is always hesitant because of the frequency of having to go to potty with all the hydration. So not sure if he will or he won’t but I sure hope so. He NEEDS to sleep. She, too, mentioned he might be released tomorrow. I told her of my concerns. She said they would determine if he will according to how he is feeling in the morning.

Bri, Louisa and girls are coming tomorrow :):):). Unfortunately the girls won’t get to see Don but I will visit with them and Louisa while Bri visits with his Dad for a bit.

It’s 8:45 p.m. – I’ll be leaving here in about 40 minutes or so.

Keep the prayers coming – we need and appreciate them.

Until tomorrow……..

Love you all!

Don & Muffin

10/28 Another Not So Good Day :(

Thought I would put the email I sent out to my family this morning and adding a bit more.
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So glad I got here when I did - when I turned the corner to go into Dad's room all the doctors were standing in front of his door along with Dr. Borrello. I was happy to see him.

Dr. B said all tests have come back negative. They did take Dad down for another CT Scan before I got here - he said it was the fastest test in history - he was back in room after 15 mins but I think it had to be longer than that - takes that long to get there *L*. But anyway, glad it was a quick trip for him.

Dr. B said when colonoscopy was taken there would have been signs of GVH (graft versus host) but there were none at all - so he is certain this is not the case with Dad. Early on they had detected very small lesions on the lungs but nothing has changed with that and he is sure nothing will change with them - he used the word stable.

He feels the diarrhea and fever is all related to the stem cell transplant - these are things that can happen - and unfortunately they did with Dad. I asked him when he thought this would stop - of course he couldn't commit to any time frame - he just said he will get better - no one can predict that time frame. I made the comment that we just wanted to get back to IPOP - what I meant by that was going there for count checks. He said we probably would not go back to IPOP - well he said maybe 1 time - but when Dad gets over this he would probably get released from here. I was happy to hear that. I'm just not happy not knowing when that may happen and of course no one knows at this point.

Dr. B was very happy about the counts - he seemed very optimistic that Dad will get over this (wish I could say soon here) - and be on his way home. He said Dad was doing great considering this setback.


12:05 p.m. – temp was 98.3
Still giving Don fluids with a bit of potassium as this count is low.

3:05 p.m. – temp was 98.8 but blood pressure was up a bit but Nurse Taryn said this could be due to all the fluids intake.

IF the diarrhea can be under control (which it has subsided somewhat – volume is so much less than it has been). They are giving him Imodium also so this could be part of it. But IF the diarrhea could get under control and definitely the fever they might think about releasing him. Oh won’t that be a happy day!! His counts are doing wonderfully!! When I say releasing him I wish this meant to go home but it could mean just releasing him from here and then we would have to continue visits to IPOP for count checks – especially red blood counts. If rbc were low they would have to give him transfusion. But let’s get OUT of here first.

5:55 p.m. – Temperature 100.8

7:20 p.m. – Temperature 100.2

Nurse Michele came in – asked him how he was feeling, checked his breathing. Will look into giving him ½ of an Ambien (sleep medication) around 11ish and the other around 2 a.m. – she will have to talk to doctor about cutting dosage in half and giving it to Don this way – this is what he requested.

Want to get this posted so I’ll let Kristi know it’s ready.

Pray for a better tomorrow. Don is wiped out L

Keep the prayers coming – we need and appreciate them all.

Love you all!

Don & Muffin

10/27 Not a Good Day

Got here around 9:15 a.m. Been making sure I’m not too late as I want to make sure I’m here when Doctor on call makes his rounds. Don told me earlier he had a temp of 104 – it’s probably a good thing I wasn’t here – they immediately gave him Tylenol. It had come down by the time I arrived – breakfast came and Don did want some cherry muffin – he made the comment he was hungry. Haven’t heard him say that in so long. He did have about half of it – which believe me was more than he’s had in quite awhile.

Dr. Fuchs came with his entourage of colleagues. He indicated he feels strongly that the problems Don is having right now is related to the transplant – okay what the heck does that mean?? I mean Don has said all along he feels the chemo drug he took Melphalan was contributing to a lot of his problems. IF this is the case how much longer?? No one seems to be able to answer that question for us and it’s getting quite frustrating to say the least. At this time Dr Fuchs indicated they would not be adding any additional antibiotics – I would imagine that’s because ALL tests have come back negative. It’s possible they might do a repeat CT scan tomorrow – goodness knows why – but maybe something will be there that didn’t show up the first time – I doubt it though.
Blood pressure and temp continued to be monitored throughout the day. Lunch time he had a few bites of turkey and mashed potatoes. Few bites is his limit but at least it’s something – oh and he had a cookie also.

Around 4:55 p.m. temp was up to 101.5 – blood pressure was also up. We had another Doctor come in to see Don – Dr. Schecter – I think we’ve seen him before. Due to rise in blood pressure he wanted it taken laying down, sitting and standing and because of the temp he wanted blood cultures done – they drew blood from the catheter and from his hand as well. Dr. Schecter ordered more fluids and Don was given Tylenol.

Temp was taken around 7:00 – it was down thank goodness. Taryn our nurse had said if it didn’t come down they would need to do ice packs under his arms so glad it did and hoping it doesn’t go back up. But this was short-lived – it’s 7:55 p.m. and temp is 100.6. Don’s nurse this evening is Ann King – a new face.

Don’s diarrhea subsided for 4 hours today – that’s the longest time in between it’s ever been. Nurse Ann is getting him some Imodium now. He will have to go to the bathroom though because of all the fluids they are giving him – it never ends it seems. They have also said he can have something to help him sleep.

I’ll be leaving here around 9-9:30 so I just pray he has a good night of sleeping and the temp doesn’t go up.

Keep the prayers coming – we need and appreciate them.

Until tomorrow……….

Love you all!

Don & Muffin

10/26 - More Testing

Got here to be with Don fairly early this morning. He was scheduled for a colonoscopy and wasn’t sure what time they were planning on coming to get him. Could be earlier in the day or later. We were given a time of 2:45 p.m. As was expected he was up all night again going to the bathroom – which has been his norm now for over a week but add the yucky prep stuff for colonoscopy to the equation and he went even more frequent :(.

Colonoscopy scheduled for 1:45 (they called and said they could do it earlier) – this is hour earlier than they had told us last night. Before being taken down his temperature was up to 102.6. They gave him Tylenol immediately. Still haven’t figured out what is causing his on again off again high temperatures. The nurse also took blood work prior to him being taken down for procedure.

Had the procedure done around 3:12ish p.m. (so NOT sure where 1:45 came from). We got back to 5B around 5:30ish. Don was able to eat a few bites of jello and some chicken noodle soup. Few trips to the bathroom but has calmed down some for now but not sure how long that will last. *sighs*
Dr. Borrello, Myeloma Specialist, is going to stop by tomorrow – we have questions and hopefully will get some answers.

The preliminary results of the colonoscopy are negative. They did take a biopsy and was told it could take 3-7 days for results. Not sure if this means Don will have to stay HERE next 3-7 days? Guess we’ll find out tomorrow.

He has dozed off a couple of times since getting back here – I’m sure there is still some of the anesthesia they gave him for the procedure in his system but if it’s helping him cat nap I’m glad. I hope tonight his stomach calms down some and he is able to sleep.

Keep the prayers coming – we need and appreciate them all!

Until tomorrow………

Love you all!

Don & Muffin

10/25 - Move upstairs to 5B - IPOP Unit

Today Don was moved upstairs – Nurse said he should have been sent to this unit on Friday but she guesses they had no beds.  We have a wonderful nurse Laurie – she laughs a lot and just has such a wonderful personality – not that we haven’t had any others like this – but she is just so cheerful and pleasant to be around.

Dr. Fuchs came by to see Don earlier before the move – he said it’s possible they will stop some of the IV medications.

Diarrhea has continued all day – there were a few spans that he went like 3 ½ hours – which is a lot better than 2 hour schedule he’s been on.

He is scheduled for a colonoscopy tomorrow so as I type this he has to drink the yucky stuff to make him go more – great huh?  Just what he needs – but yeah he has too – that’s part of the process.

Temperature and blood pressure have both been good today.

He dozed off a few times today – not long each time but at least he got a little bit of sleep.

Dr. Borrello – Don’s Myeloma doctor came by to see Don – I know Don was happy to see him.  He said he would come again soon.   I did ask Dr. B what if the colonoscopy shows nothing – but I thought that was kinda silly question – we have to just wait and see – no speculating.  I’m sure they will have a plan in action.

I think it’s going to be an even longer night than the others with the colonoscopy prep – I’m going to post this early. 

Keep the prayers coming - we need and appreciate them all!

Love you all!

Don & Muffin

10/24 – Still in room 4B

Thought I would get this posted.  It’s 8:25 pm and I’m over here with Don – will be leaving here in a bit to go back to the apartment.

One good thing for today is counts are going up – so hopefully within a few days it will be okay to have family visits – well visits that can actually be in the same room as Don.  Hope it’s soon!!

We had Nurse Kristen – a really sweet girl that got married I think she said a week after Mark and Brina.  Had her 2 days in a row so we liked that!!  Don’s temp and blood pressure were okay this morning.

10:25 a.m. – Had visit from Dr. Fuchs – he was doctor on call.  He actually came yesterday as well.  He asked Don how he was feeling.  Indicated they would probably start cutting down on the antibiotics IF he has no temperature in 24 hours – but would continue the anti-fungal medication because they suspect there is infection in colon area.  I honestly don’t think they have pinpointed it as a definite – but apparently it’s a strong possibility – that is why they are continuing the medication.  I got the impression from him that Don perhaps might, just might be released tomorrow or Tuesday.  As much as I want it to be tomorrow – I don’t want it unless Don is ready to go.  Unfortunately Don’s temp was just taken at 8:15 pm and it was 100.4 LL.  Nurse will retake it at 9:00 – she said she would notify the Doctor to let him know – so I guess we won’t go tomorrow – will have to wait and see.

He still has diarrhea but the frequency has settled down – it’s been 2 to 3 hours between which is a huge difference of going every half hour or so – so that’s quite an improvement so hopefully something is working!!

He ate some applesauce today and for dinner had few bites of turkey and mashed potatoes – after not eating for 2+ days I was happy with this!!  Just wish he could sleep – he hasn’t really slept in 36+ hours – just cat naps here and there.  They can’t give him anything to sleep because this could be a problem with him having diarrhea and it could interfere with medications he is taking.  I just don’t know how long he can keep this up.

Sorry folks I’m kinda all over the place with this blog – just reading my notes and trying to get it all down.  Another doctor came around 2:45 pm and asked about his stomach problems – did press on stomach and asked Don if he had pain – he said no.  He really hasn’t had any pain when anyone has pressed so that is a good thing!

Don did take a shower today so I know that felt good and made him feel a bit better. 

His blood pressure has been good today – and they did give him some hydration with electrolytes to help replace some of the calcium, potassium and magnesium he is losing.  Waiting now for Nurse Irina to come in around 9ish to retake temperature – I just can’t figure out why it goes up at night L.

I’m going to post this and come back and add a few more notes before I leave for the night. TEMP UPDATE - Nurse just took blood pressure - it was good - temperature down to 99.6.

Just hope Don can get some sleep tonight.

Please keep the prayers coming – we need and appreciate them all.

Love you all!

Don & Muffin

Night of 10/22 into 10/23 - Unexpected turn of events

Night of 10/22

Well I think I left you all last night saying Don was resting and attempting to eat some applesauce.  About 9:18 pm I took his temperature.  It was 100.6 – yep you got it, panic set in.  Whenever the temp is 100.5 and above you have to call over to IPOP to get instructions on what to do.  So I called – after about 20 minutes I finally was able to talk to the Doctor on call – he told me to get Don over to JH and they would have a bed ready for him.  Took awhile to get Don ready for this – he was just so exhausted from a long day over at IPOP anyway.  We drove over and by 11:05 he was admitted.  His temp at that point had gone down to 99.9.  Nurse Mikala did an EKG right in the room, took weight and height.  Asked questions – any pain, nausea, headaches, difficulty urinating and many many more.  They were just trying to get some background information on him and whether or not he had any problems with those things.  Dr. Laura Loubser (not sure of spelling) was Doctor that came to see Don.  She ordered fluids immediately and wanted a stool sample as Don told her of his constant battle with diarrhea which has been going on for almost a week now L.  A CT scan was ordered and an x-ray of his abdominal area.  His blood work was taken and he immediately was hooked up to antibiotics.  Because of the CT Scan he had to drink the contrast fluid – believe me I didn’t think he was going to get it down but he did.  He had to drink the fluid for hour + - CT Scan tech came to pick Don up around 3:00 a.m.  I headed back to the apt then with a security escort (a wonderful service they offer and it was so appreciated)  - I was thoroughly exhausted as well as Don.  As I walked into the apartment it hit me like a ton of bricks – the reality that Don wasn’t with me and he would be in the room by himself was just too much for me to bear at the time.  Yep I did – I had a good cry and fell asleep by 3:30 a.m.   I knew in my heart he was fine – this is where he NEEDED to be and that they would take good care of him.  Was just so dang hard.

Got up around 8ish – oh now we’re up to today 10/23 – Bri & Kristi came to visit and brought us a goodie box filled with stuff from Gram & Ellen – cards, flowers, food,paper plates (Halloween), a Halloween placemat that Kristi had made when she was in Elementary School which got put on the fridge right away J and a beautiful magnet from Gram to Don (he loved it Gram!!) – it was wonderful JJ.  Bri and Kristi walked over to JH – they were able to stand outside of the room and see and talk to Don.  With his counts down it was just best they didn’t go in – but believe me they sure wanted to.   I know how hard that is on them and him as well.  They stayed for quite awhile – and it was so wonderful to see them!

Lunch came for Don – umm no I don’t think so – chicken in gravy, veggies and pasta – cookie for dessert.  He, of course wanted no part of it – which I expected.  I did eat a little of it.  Dinner came later as well – same thing – I ate a little.  Kristi will be happy that I did as she’s worried about me not eating – I ate the breakfast bar she gave me also this morning – so yes honey I am J.

Around 6:25 pm temp was up around to 100.  Wish they would figure out why his temp keeps going up and down – they are constantly hydrating him and giving him antibiotics.  Unfortunately at this time they are not sure what is going on but they are really trying to find out.  It’s just so frustrating for him not knowing – and the diarrhea continues – he has to go once every hour and with just liquid you can imagine it’s just wearing him out.  They are worried about bacterial infection – of course my feeling is there has to be something somewhere that is making it impossible for him to eat and then to lose most of what he is drinking.  We do have faith that they will find something out – the doctor said today they would probably keep him until Tues or Wednesday of next week.  Just pray everyone that he somehow gets his appetite back – he can’t continue this.  They will have to give him nutrients at some point in time because as of right now he is getting 0 nutrition.

Before I left temp was taken and it was good - blood pressure was up a bit - Nurse Irina was going to let the doctor know to see if they wanted to give him something.

I came back around 8:45 this evening to do some laundry – Don needs a few things tomorrow.  Don and I both have so much confidence in the doctors at Johns Hopkins – we know they are working hard to find out what is going on with him – we just hope it’s very very soon.

I pray he sleeps some tonight – that’s hard to do when they are coming in a lot checking his temp, blood pressure – but we know that’s what they need to do but sure doesn’t help when you need to sleep and he needs it!

Here’s hoping for a better day tomorrow.

Please keep the prayers coming – we need and appreciate them all!

Love you all!

Don & Muffin

10/22 - Long long visit - lots going on

Day began with Don not feeling well – he was up at 6:00 a.m. with upset stomach and going to the bathroom.  We had 10:00 a.m. appointment instead of 2 – he was scheduled to get 2 units of blood so that’s why they changed the appointment.  Our norm is for Don and I to walk over to JH since it’s so close but he felt so bad there was no way – I drove over and we decided rather than me park and have to make him wait long we just did the Valet parking which worked out so much better.

Once in IPOP they took his temp, weight, blood pressure – asked the normal questions as to how he was feeling, eating, etc. etc.  Blood pressure was low again but rather than hook him up for hydration they said they would just wait and not do that since he was getting red blood today.  They have to call and order the units so they did that close to 10ish. 

11:05 still waiting for the blood to come – in the meantime Nurse Practitioner Kelly came to visit and checked his breathing – asked her usual questions.  She said the red blood should definitely help get some of his energy back – sure hope so.  Finally came at 11:25 – while transfusing they do monitor his vitals and temp – blood pressure was still low so they hooked him up to potassium as well as the red blood.  His temp also was elevated at this time.  After several times of monitoring they could see a pattern of Don’s temp going up.  At 1:10 it was high – 100.8.  Anytime it is above 100.5 is cause for alarm.  Our Nurse for the day was Kathy – she called NP Kelly to let her know about the temp and to see if she should proceed with the 2^nd unit of blood or wait.  Kelly suggested that Tylenol be given to help with the fever – they also decided to give him an antibiotic called Vancomycin.  They believe the fever is due to what is call Mucositis which is the painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as an adverse effect of chemotherapy and radiotherapy treatment for cancer.  They gave this to him intravenously as well.

1:20 - Tylenol was given and the 2^nd unit of blood was ordered.  They did draw more blood – he was given potassium and zofran (nausea medication) intravenously.

 2:15 p.m. – still waiting for 2^nd unit to arrive.  He managed to eat some applesauce because he needed to take the medications he takes everyday and at that point in time still had not taken them and it was getting later and later for that.

2:40 – 2^nd unit finally – I had told you earlier they took more blood work.  When the results of this came they decided to give him calcium also.  Okay at this point in time he had all of these going in at one time:

Red blood – calcium – potassium – antibiotic Vancomycin – and hydration (they changed their mind at some point). 

Temperature continued to come down throughout the day and when we left at 4:50ish it was down to 98.8.  I will continue to monitor this evening.

Also – he needs the antibiotic Vancomycin every 12 hours – so at 1:00 a.m. I get to administer this – something new I learned how to do today.  This takes about 30 mins to 1 hour to administer so he’s going to be kept awake late tonight as well as myself – not worried about me – just one more thing to subject him too LL but hopefully if there is any kind of infection going on this will take care of it.

2:00 appointment tomorrow but we have to be there at 1:00 p.m. so he can get the new antibiotic and keep the 12 hour schedule.

Hoping tomorrow he feels better and has more energy.  Sure been a rough few days.  His Neutrophil count is still at “0” so this means no visitors L.  Bri is coming tomorrow but he won’t be able to see his Dad L but I will sure be happy to see him.

Don has been resting since we got back – he tried to eat a piece of toast but didn’t agree w/him.  Trying some applesauce – let’s hope.

Keep those prayers coming – we appreciate and need them all!

Until tomorrow………..

Love you all,

Don & Muffin

Subject 10/21 – 2:00 p.m. IPOP

Saundra was our nurse today – as soon as they took Don’s vitals - temp, weight, blood work, blood pressure - they knew right away he would need hydration – blood pressure was low again – hydrated him for 2 hours. When blood work came back, potassium was low so they gave him this as well.

At first Saundra had given us 4 pills for Don to take but the thought of taking another pill made Don feel worse so he asked for the IV potassium which worked out better for him all around.Nurse Practitioner Mindy came to visit and talk w/Don. She said they would definitely give him red blood tomorrow because it was just so obvious he is just wiped out and no energy whatsoever so she said because it was so late in the afternoon they would wait and do it tomorrow at 10. Don said later when we got home he wished they had done it today.

One of the biggest challenges right now is getting him to eat. He does try so hard but nothing taste right and with his stomach being so queasy he just has no appetite at all. Of course I am constantly asking him do you want this? that? the other? Nothing sounds good to him – so I’m having a really hard time with this but not giving up – I think he eats to keep me quiet haha. No I honestly know that he knows he HAS to eat – something. NP Mindy said that today – try something every couple of hours – just a little. We all know how important it is that he eats – and he knows also – one thing WE don’t know is how he truly feels when he even thinks about food, much less trying to eat it. I am confident this will change soon. I don’t think he will be eating a lot anytime soon but am optimistic that he will at least be able to get on some kind of schedule even if it’s every 1 ½ hours to 2 hours.

He will be getting in bed soon – I just pray he has a good night .

Keep the prayers coming – we appreciate them all!

Until tomorrow…….

Love you all!

Don & Muffin

10/20 - Count Checks

Not a good morning for Don – he felt awful as soon as he woke up – he had been up a few times throughout the night.  His energy level was probably at a “0” if I was to give it a rating.  Had a few episodes of diarrhea throughout the night also – not a lot but 1 is too many for the way he has been feeling.  I called IPOP early to find out about the stool culture – if anything was wrong he couldn’t get Imodium but thankfully it was fine so off to the pharmacy I went to get it.  Gave him some around 11:30ish a.m.  I think it has really helped so far (considering it’s 8:53 p.m.).  Stomach still continues to feel queasy though.  He felt dizzy early on and that continued on throughout the day.

2:00 p.m. appointment in HIPOP – Nurse was Jo – great lady we’ve had before.  Another nurse Brenda took his temp, weight, blood pressure.  His blood pressure again was very low so he was hooked up for hydration.  Nurse Practitioner came and asked the normal questions – she gave him a new med for nausea – yep one more try.  The two he already has doesn’t seem to help so why not?  Let’s hope THIS one helps.  Because Don has been running a low grade fever in the evening she had discussions with another colleague as to whether or not she was going to put Don on an antibiotic.  They decided they would not at this time. 

His potassium was low once again so they gave him transfusion of this as well.  We left there at about 5:20 p.m.

Got home and Don rested – I went to 7-11 and when I got back fixed him some dinner after awhile.  He did pretty good – some baked potato, corn and applesauce.  So far so good as far as stomach goes.  It sure did gurgle a lot though – so we were thinking “oh boy here it comes”.  But not yet and with any luck it will be okay. 

He laid back now but says he will get up in a bit – guess we’ll see if he really feels like it or not.  He seems most comfortable lying down but I like him to be up – even if it’s sitting on the recliner. 

Okay going to post this – Don is going to eat some yogurt and then head back to bed soon.

Keep those prayers coming – we appreciate them all!!

Until tomorrow……

Love you all!

Don & Muffin

10/19 - Count checks

2:00 p.m. – Appointment in HIPOP – Nurse Heather

We had Nurse Heather but Nurse Brenda took Don’s weight, temp, blood work and blood pressure.  Apparently they take BP when sitting and then while standing.  While standing Don’s BP went lower than they liked so they gave him hydration for 1 hour.  His potassium levels were also lower than they like so they gave him this also – during the same time.  Nurse Heather asked the normal questions – how he was feeling? Sleeping? Eating? Bowels? Checked his breathing.  Because of his diarrhea they had Don collect a sample yesterday for culturing today – those results were not in today so tomorrow.  Nurse Practitioner Kelly said having diarrhea takes a lot of potassium out of your system so this could explain why his was low.  Once the culture comes back tomorrow and she feels it will be okay – she will prescribe Imodium to help for his diarrhea but couldn’t because it didn’t come back today.  She did give us some suggestions for eating until this goes away – which we hope it does and soon.  It’s called BRATT – bananas, rice, applesauce, toast and tea (ginger or peppermint but can be regular tea).

We were done by 4:20 and on our way back.  Mark and Sabrina were waiting for us at the building.  They brought Don a new fleece which he loved, some magazines, Gatorade and a few other things.  Because of the blood work today and one of the counts hitting “0” – which we knew was going to happen and was totally expecting to happen – it was decided they wouldn’t see Don and would wait until the #’s started going up - Don went up to the room and I spent some time with them.  We had a free dinner in the kitchen here at the building and we sat and talked for awhile.  I did feel awful that Don couldn’t visit but we decided it was just safer this way since his counts are down.   He was happy that I could visit with them and kept telling me to take my time and don’t rush.  They were on their way after about an hour I think – maybe a little more (but not long enough for me but I wanted to get back up to Don) – but it was a great visit and I felt better (much better) after seeing them.  It was just one of those days that I NEEDED this.

Unfortunately until his #’s start coming up we won’t be able to have visitors – but I will surely let everyone know when that is possible and we are so hoping it is soon!!

I fixed Don a light dinner – he managed okay.  It’s getting hard and harder for me to nag him about eating because I know he just doesn’t want it – oh did I say nag? *L*. 

Well he’s going to rest now and I’m going to get this posted. 

Please keep the prayers coming – we appreciate them all!

Until tomorrow……..

Love you all!

Don & Muffin

10/18 - 2:00 p.m. visit for counts check

Kathy was our nurse for the visit – it’s always nice to have someone that we’ve had before.  Took Don’s weight, temp.  I’m happy he is maintaining his weight so far – not sure how long this will last but for now I’m glad.  He had a rough night going to the bathroom – not frequently but when he did go it wasn’t so pleasant for him L - made for a rough morning – just didn’t feel well at all with stomach being so unsettled and queasy.

Kathy took Don’s blood pressure (BP) as well as weight and temp.  Apparently when he stood up his BP went down.  They said this isn’t unusual but as a precaution they gave him hydration for 1 hour.  When Don told Kathy about diarrhea last night she let the Nurse Practitioner (NP) Kelly know and they want a sample for tomorrow – we will take back then.  They want to make sure he doesn’t have any kind bacterial infection.  They can’t give Don anything like Imodium until they make sure there is no infection.  Once it is determined there is no infection, they will give him something for the diarrhea - so hope there isn't so they will!!  Also while Kathy was examining the dressing that is over the port Don said it was really tender to the touch.  She again informed Kelly – it is red around the port opening but I told Don it’s been red awhile and I told Kelly that as well.  I know they would have had to notice it before now.  Anyway – they will do a culture on the spot tomorrow just to make sure it’s okay. 

NP Kelly came in and checked his breathing and asked her normal questions – Don always manages to say something that makes her laugh.  While examining Don he told her he was having a hard time swallowing his pills – this just started this morning actually.  We told her he has gargled everyday to prevent any mouth sores.  She said it’s possible to have them further down his esophagus and this could be the problem.  Not sure what they can do about this – I’m a bit concerned because he has to have medication every day. 

We got the blood work and as suspected his counts are dropping – but we knew that.  His potassium was low so rather than keep us there for 2-hour infusion they gave us some pills for him to take.  Even though I was like “oh great more pills” it was better than staying there for 2 more hours. 

We were on our way back to apartment by 3:25 p.m. so this was a quick visit.  Back tomorrow at 2:00 p.m.

Took our trip to 7-11 for my coffee and scratch offs – but of course haha!!  Sure wish I would win something big on these dang things!  Don had apple and pears when we got back – he managed to get down 2 of the potassium pills without a problem – thank goodness.  Two more to go later.  Don laid down and I need to get him up – now what to fix him for dinner is the question.

About 7:15 p.m. I fixed him some green beans and round potatoes – he ate them fine – and he had to take other 2 potassium pills and another one – so far so good.

He’s going to lay down a bit and then watch some Monday night football.  So I’m going to post this and call it a day as well.  Update - he didn't lay down - but he is watching some TV waiting for Monday night football!

Keep those prayers coming everyone – we appreciate them all!

Until tomorrow…………

Love you all!

Don & Muffin

10/17 - 2:00 p.m. appointment in HIPOP

Don got up around 8ish – I was a bit later.  He was able to get cereal down – every day I give him a bit more hoping he doesn’t notice – but yeah he notices – but he is able to eat what I give him so that makes me happy.  We headed for Safeway around 11:00 a.m.  *deep sighs* - going to the grocery store has never been a favorite thing of mine – and after going in and seeing 50 million people (okay okay I know that is a bit exaggerated) – but it sure seemed like it.  The hardest part is going into a store that you are just not familiar with so that means going down each and every isle to make sure you get what is on your list.  EVEN with a list I forgot something *grrrrrrrrrr* - but it’s something I can find at 7-11 so that shouldn’t be a problem.  Checkout was fun – every line other than 15 or less was filled baskets so I knew I would be in line for awhile – Don said total time was about 45 minutes – to me it felt like 45 hours haha!!  He stayed in the car and waited for me – just way too many people for him to be around.  Okay so that is my whining for the day.

Don feels quite tired today – his counts are definitely going down and he feels it.  We won’t be surprised if he needs red blood cells today – just have to wait and see when we go over.  He’s watching the Baltimore/NE game for a bit until we walk over in about 20 minutes.

2:00 p.m. – HIPOP – Our nurse was Chris – very nice guy.  Took Don’s weight, temp and blood work.  He is maintaining his weight so I’m thrilled about that.    He’s eaten pretty good so far today – lots of little meals – and drank a lot.  Have to always keep his fluid intake up!!

2:45 Chris came in and asked a lot of questions – how he was feeling? Any pain?  Bowels?  Shortness of break – the normal ones they ask every day but we’re glad they do.  Blood work took a long time today but we watched the Patriots win so the time didn’t seem long at all!!  Left there at 4ish.  Walked back and Don had some pears and yogurt – will eat around 6 or 6:30.  I think I’ve recovered from the grocery store trip today *LOL*.  We did get his blood work results and as expected they are continuing to drop but not enough that he needed red blood.  We’ll see tomorrow.

Watching Dallas and the Vikings – come on Vikings!!!!!!!!!!!!!!!!!!!!!   Yippeeeeeeeeeee – VIKINGS won!

Had dinner and now waiting for the Skins to come on – we took a really good walk before dinner – around the block!!

Okay going to post this – Don is relaxing and I’ll be ironing in a bit.

Keep those prayers coming everyone – we appreciate them all!

Until tomorrow…………

Love you all!

Don & Muffin

10/16 - Quick visit today

Had 2:00 p.m. appointment today.  This was the first late one since we’ve been here.  Have mixed feelings about the later time.  We like it because we were able to sleep in but I think getting up and getting going is better.  We have another appointment tomorrow at 2 but I think we will request for an earlier appointment time for next week.

It was such a quick visit – they took blood work, temp, weight – asked the normal questions.  Our Nurse today was Christina – a new one we had not had before.  We had to wait for the blood work results and then we were on our way.  The counts they are monitoring are definitely dropping as they said they would.  When the packed cell volume counts go down to 25 they will need to give Don some red blood cells – an infusion.  Don feels pretty sure this might happen tomorrow as that count today is 28.3 – but who knows tomorrow it might not be down to 25 so it could be on Monday.

We got back by 3:30 and Don ate some – watched the Nebraska game – and then Karen, Steve and Dan came to visit – so nice to see them all.  They stayed about an hour and were on their way.

We will eat dinner soon and will watch the race.  We got a flyer that due to Maintenance work we won’t have heat or hot water from 8:00 pm this evening to 7:00 a.m. tomorrow – nice huh?  Not sure why they just didn’t plan on doing this during the day – but oh well, what do you do?  I’m sure Don will be fine – I’ll just put x-tra blankets on the bed if I need to.

Keep the prayers coming – we appreciate them all!

Until tomorrow…………

Love you all!

Don & Muffin

10/15 - MILS DAY

8:00 a.m. – arrived in IPOP – Kathy was our nurse again which we liked.  It’s rare to get the same nurse and to have her 3 times this week was great!

Took Don’s weight, temp – asked how he was feeling – the normal questions they must ask every day.  Kathy said the MILS cells were scheduled to arrive at 10.  The MILS is part of the trial he is participating in with Dr. Borrello, the Myeloma Specialist. Don was hydrated for 1 hour prior to them arriving.  Nurse Practitioner Kelly came to visit to see how Don was doing.  Again the normal routine questions.  Don’s vitals were monitored but he didn’t have to stay hooked up – Kathy wheeled the machine in and checked them about every half hour.

10:15 a.m. – MILS arrived.  They are stored in the same manner the stem cells were in this huge tank and are frozen.  There were 6 packets to infuse.  Each one is taken out, thawed and hooked up to infuse intravenously.   After the infusion they gave him a Saline solution – at approximately 11:15 they were all done.  This was followed by another 2 hours of hydration. 

Don really got through this process with little problems.  His stomach was a little queasy but he never got sick which was really good.   This actually was a very good day for him.  He ate at different times – nothing really big at any one time but I’m happy with several times a day just a little at a time.

1:30 – we were leaving to go back to the apartment.

Don rested when we got home but not too long -  we headed for 7-11 for my coffee.  Came back and he rested some more.  Kristi and Charlie came to visit  and we ordered dinner from BOP – the great pizza place in Fells Point – about 10 mins down the road.  They left close to 9:30 p.m.  They bought over some things we needed which is always appreciated.  Gram had gotten together some hats, scarf and jacket for Don.  With the cool morning walks over to JH he was happy to get them.

Heading to bed soon – we have a LATE appointment tomorrow at 2:00 pm.  If we decide we don’t like the later one we will change back to early.

There is a marathon scheduled tomorrow in Baltimore so if we can find the route Don wants to go somewhere and just watch – hopefully we can – even if it’s for a short while.

Keep the prayers coming – we appreciate them all!

Until tomorrow……

Love you all!

Don & Muffin

10/14 - Quick visit to JH - TOMORROW MILS DAY

8:00 a.m. -  appointment in IPOP today.  It seems we no sooner got there it was time to leave.  Now that doesn’t happen very often!!  Nurse Kathy took his temp, weight, blood work. Nurse Practitioner Mindy Landau came to see Don.  First time we had ever met her – asked the normal questions, how he was feeling?  Checked his breathing.  Oh wait she didn’t check his ankles for swelling – she must be slipping haha!!  We waited and before we knew it blood work results were back and we were heading out the door by 9:10.

9:20 – We went down to the hair place – we had a 11:00 appointment but since we were done so early we thought we would try.  They took Don right away, no problem.  The lady shaved his head (remember Bri cut it last weekend so she just had some to take off).  He bought a new head scarf, hat to wear to bed and some Vitamin E to put on his scalp to prevent dryness.  He really is a handsome devil!!!  ;)

It’s been kind of a slowww day because of all the rain in Baltimore.  We couldn’t take our walks so it has just made the day longer but that’s okay – hopefully tomorrow we can make up for it but we’ll just have to wait and see how the day goes.

Don’s eaten fairly well today – and drank a lot so no nagging today haha!

Tomorrow is the MILS infusion – which is part of the trial that he is participating in with Dr. Borrello – Myeloma Specialist.  Not sure how long this process will be but we are anticipating a long day as there will be hydration involved and I’m sure they will monitor his vitals during the process as they did during the stem cell transplant.

Keep those prayers coming – we appreciate them all!!

Till tomorrow………….

Love you all!

Don & Muffin

10/13 - Quick Visit to JH

8:00 – Arrived at JH – Nurse today was Kathy – very sweet girl J - took Don’s weight, temp, asked normal how are you feeling questions.  Took blood work so we had to wait for that.  Didn’t seem to wait that long for results – not sure if that means we are just getting used to waiting or not.  Hold up – what am I saying?  I hate to wait for anything haha – but do have more patience in some things than Don but one thing he has never minded waiting for is anything to do with doctors -  but a line at the grocery store he turns into a bear!! *L* 

Nurse Practitioner Kelly came and talked to Don – again asking the routine questions – how he was feeling?  Any nausea?  How he was sleeping, etc. 

Blood work came back and numbers are definitely dropping – they are expecting in a few days one of the counts will drop to “0”.  As I’ve explained before – this means he will have no immune system and will be so susceptible to getting sick.  Let’s pray not – lots of prayers being said for that one.  He feels better than yesterday but that’s not to say he feels great.  His stomach is still very queasy – he has 2 medications for that and they seem to help a little.  He’s eaten some today – not a lot – but this is expected.  When I ask if he wants this or that he turns that nose up at me – okay one more time and he’s getting the nag patrol after him!!  Haha

We left around 10ish so it was a quick visit for sure.

Nurse Practitioner Kelly did write prescription for sleep aid to help him sleep.  We both take it because I have a lot of trouble in that department as well. 

We did stop by to see if Don could get his hair shaved.  Last Saturday when Bri was here he cut Don’s hair really short – Don didn’t get upset as he’s prepared himself for this for a long time now.  I had forgotten to include this in my blog for last Saturday.  He is STILL as handsome as ever JJ.  It is starting to come out more so he’s just going to do it and it’s okay everyone – he really is totally fine with it!!  They couldn’t do it today so we have appointment for 11:00 a.m. tomorrow.

Afternoon Don rested – I fixed nuggets and mashed potatoes for dinner and he ate some.  Of course not as much as I wanted him to – but hey even 2 nuggets and about 4 tablespoons of mashed taters was better than 1 nugget and a spoonful – so I was happy!

Getting ready to talk to Kendall and Raelynn on Skype – can’t wait for that!

Don said he wanted part of a chocolate junior – this cake thingy he likes so that makes me happy too!!  Anytime he eats I’m happy!!  Wow 4 happy’s in 4 sentences!!! JJ

Okay folks calling this one done for the day!

Until tomorrow…………

Love you all!

Don & Muffin

10/12 - STEM CELL TRANSPLANT DAY!!

Well this is the day that the stem cells collected back on October 4 were put back in.  Day started at 8:00 a.m. – took the blood work, checked weight, temp by Nurse Jo (short for JoAnn – great lady!!).  We were told stem cells would be delivered up to HIPOP at 10:00.  Don was given Zofran the anti-nausea medication because  he had such a rough afternoon yesterday with stomach being so unsettled and queasy.   Stem cells were delivered around 10:15ish.  Don would be given 300 ml – which broke down into 6 bags (units) – and they were rather small in size.  Oh prior to this Nurse Practitioner Kelly came and chatted with Don – just the normal questions as to how he was feeling, checked breathing and for swelling in the ankle area. 

10:25 am – first bag was hooked up and infused with 5 to go.  Each bag took 3-5 minutes to empty.  As soon as 1 was done the other was prepared.   During the infusion Don’s vitals were constantly being monitored.  If his blood pressure or heart rate were to go up at all during the infusion they could slow down the flow to help lower these – his vitals were monitored throughout the entire process.

After the 3^rd bag Don’s stomach really got upset so they had to wait a bit before going on to the 4^th bag.  After waiting just a short while they proceeded with bag 5 and by 11:06 the entire process of the stem cell transplant was done!! 

At 11:10 they gave Don another medicine for nausea – I was starting to wonder if the anti-nausea medicine was actually making him sick as he got sick again L.  Of course I know it wasn’t the medicine but it sure seemed like it at the time.

After the transplant Don’s temp was taken – it was higher than they liked so we had to wait until it went down some.  At 2:05 our Nurse called Kelly and she said to keep Don there another hour.  So it was around 3:10 when they released him to go back to the apartment.

The challenge right now is to get Don to eat a bit more than he has been – he just has no appetite but  this is to be expected.  I told him you don’t have to eat a lot of any 1 thing – just little bites during the day just to get his energy up.  I do nag him about it –oh wait me nag?? Haha YOU BET!! I’ll do what it takes until he gives in just to shut me up!!  haha

Don’s resting now and has been for awhile – tomorrow I will I’m sure nag (oh wait that just doesn’t sound nice does it?  Okay I will STRONGLY SUGGEST ) he eat more and I will get him walking more.  I didn’t push it this evening when we got back because I know he is totally exhausted after such a long day.  Back to JH at 8:00 a.m. tomorrow.

Keep the prayers coming our way everyone!

Until tomorrow…………

Love you all!

Don & Muffin

10/11 - Day 2 of MELPHALAN

8:00 a.m. appointment in IPOP today.  We had Nurse Diane – different “Diane” than before.  Took his blood work, weight, height.  Sent the request for Melphalan because as said yesterday they don’t have it ready – have to notify the lab to prepare it.  We went to get coffee and danish until blood work was back. 

9:10 a.m. – said Melphalan would arrive in about 30 minutes – started the Zofran which is the anti-nausea medication.  Seemed to do a really good job of helping yesterday so hopeful this one will do the same.  Melphalan arrived at 9:40 a.m.

We got the blood work report and were rather surprised that the white blood count, red blood count and platelets were still rather high.  We wondered if this would impact the stem cell transplant tomorrow.  Nurse Diane said no – and that that didn’t matter.  There is a strict schedule to adhere to for the transplant and it would take place on Tuesday. 

The Nurse Practitioner, Kelly Sahl came to see Don.  Checked his breathing, for swelling and just asked the normal questions as to how he was feeling and holding up?  We did get a prescription for Zofran to take this evening and tomorrow – it will help with nausea if there is any.  So far so good – Don did say his stomach was just a tad bit queasy but not bad at all – which is a good thing!!

Got 3 more prescriptions that he will start tomorrow :

Avelox – to treat infection caused by certain bacteria.

Fluconazole – treating and preventing yeast and fungal infections

Valtrex – to treat shingles (even though he doesn’t have them) and cold sores.

As you can tell, these are all given to help ward off any infection whatsoever as his counts will drop in time and he will be so susceptible to everything.

11:05 a.m.  – leaving

Went back to Apt – took a quick trip to 7-11 – came back and Don had lunch and laid down.  I was hoping he would sleep but he’s not – just resting.  Need to walk back to pharmacy in a bit to pick up the Zofran prescription we had to leave earlier.

Unfortunately as the evening went on Don’s stomach was feeling more and more queasy.  He took the Zofran earlier but just not working as well as he wants it to.  I gave him some dinner options – nothing sounded good.  He had suggested earlier spaghetti from Brick Oven.  My initial reaction was “well if that’s what you want” but I knew it just wouldn’t work.  I decided on eggs, sausage and toast.  I knew or thought he could at least get an egg and a piece of toast down.  It just wasn’t meant to be – he took a bite of toast and just couldn’t do it.  He did have some yogurt but said even that was hard to eat. I guess I thought since the Zofran helped so much yesterday and he had a good eating day that it would work the same today.   I guess all this is falling under the category of “we just didn’t know what to expect”.  But Don is taking this one day at a time and he will handle it – I know he will!!!

He’s already showered and going to watch the Vikings kick butt in a bit.  Just keep those prayers coming everyone.  Tomorrow is the stem cell transplant.  We go to IPOP at 8 – they will take blood work first – and they will to notify the lab we’re there so they can transport the stem cells up to IPOP for Don. 

Keep those prayers coming everyone!

Until tomorrow.........

Love you all,

Don & Muffin

10/10 - MELPHALAN DAY

Arrived in IPOP at 8:00 a.m.  Nurse Mike took his vitals and blood work.  Dr. Gladstone (physician on call) checked his breathing, checked for swelling asked the basic questions how he was feeling?

The Melphalan had to be prepared (they don’t just keep it on hand – it’s made up as needed) so we had to wait for that.  They did want blood work results as well in case he needed anything else.  They did give him Zofran – the anti-nausea medication – before getting the Melphalan.  If he needs more anti-nausea medication we have a prescription we had from previous visits.

9:15 – still waiting for Melphalan but did go to get coffee and bagel for Don.  So far his appetite is good but I’m sure that will change.

9:35 – Melphalan arrived – he had the 20 minute infusion – we were done by 9:55 and by 10:10 am on our way back to apartment.

Don ate cereal when we got back – what a piggy *haha* - I mean by 10:20 he had had a pop tart, ¾’s of a bagel w/cream cheese and cereal!!  But happy to see that!!

One of the new things he has to do is gargle every three hours with a solution of baking soda, salt and water.  This is to prevent mouth sores which we are so hoping he doesn’t get.  We understand from reading and Kristi’s research that they can be quite painful. 

He is resting right now – says he does feel tired.  Kristi and Charlie are coming for a visit!! JJ

Had a nice visit from Kristi and Charlie J - we took them to activity room and played fooze (spelling) ball.  That was a alot of fun!!

They left around 6ish – fixed Don dinner and he’s watching football.  He has eaten really good today and I’m thrilled.  So far no bad side effects from the chemo treatment today but I’m thinking it won’t be the same tomorrow – we’ll see.  But I sure hope it’s like today!!

Not sure when the stem cell transplant will be – I’m sure they will let us know tomorrow when we go back.

Of course as soon as we know – I will let everyone else know.

Back to IPOP 10/11 for 2^nd round of Melphalan - 8:00 a.m.

Until tomorrow……

Love you all!

Don & Muffin