Merry Christmas & Happy New Year

12/24 - Merry Christmas Eve to everyone!!

Wanted to say hello to everyone and to wish you all a wonderful time with your family, loved ones and friends.

We have so much to be thankful for this year - not to say we're not thankful "every" year - but what a year this has been - and at this point in time Don is doing great!!  He and I both have returned to work - almost ready for Santa and can't wait to spend this wonderful time with our friends and family.

He is feeling good - still has to take it easy - but considering how he was few months ago - he has come a long long way and we are so truely thankful for that.  He will continue his visits to see Dr. Borrello, the Myeloma Specialist, and will continue with his vaccine schedules. 

Thank you all for your continued support and prayers.

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

Until next time......

Love you all!

Don & Muffin

12/15 - Wonderful News To Share

Wanted to say hello to everyone and to pass on some wonderful news J - below is what our daughter Kristi posted on face book – for those that don’t have it – come on, get with it hahaha!!! 

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·         "An early Christmas present for the entire Hood family and supporters :) As of today, Dad has 0% (ZERO) plasma cells (Myeloma) in his bone marrow. When he was diagnosed he was at 60-80%!! There are still tiny traces of the cancer in the blood BUT Dr. B said they can still come down with his ongoing vaccine. So for... now, we celebrate the great news and enjoy the holidays with our loved ones! ♥♥♥"

We had an early appointment today – Don had blood work – then our visit with Dr. Borrello – he said all of Don’s blood work #’s looked great and gave us the wonderful news.  Needless to say we couldn’t be happier JJ.  Dr. B signed Don’s paper to go back to work – he asked Don with or without restrictions.  Don hesitated and said as much as he would love putting down “with restrictions” – meaning maybe going back on a limited schedule he told Dr. B no – no restrictions.  He will do his best and see what happens – that’s all he can do is try.  He is looking forward to going back in that it’s one step closer to his “normal” routine.  A few months back we had doubts when he would resume anything normal.  But as the weeks have gone by he is slowly but surely getting back to his “normals”.

After discussions with Dr. B he had to meet with Anna to give him his vaccine – this is the vaccine that is part of the trial he is participating in with Dr. B.  It’s too early to know how the vaccines will help – only time will tell that.  He has another series of shots in April.

Okay everyone – wanted to share our good news.  We are so blessed with so many friends and family who have supported Don during this process.  We asked for your continued support and prayers – it’s not over yet but the prognosis is great!!

Until next time......

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

Love you all!

Don & Muffin

12/9 - Saying hello!

Thought I would say hello to everyone.  I know there are many who come here frequently checking for any updates.  As you know, we've been home for 3+ weeks now.  This is my 2nd full week of getting back to work and it's going good.  I am able to get help from 2 ladies in my office and what a big relief this has been for me.  I appreciate them so so much.  Don is doing good.  He continues to improve each day - but like I have said many times before - he has a long way to go.  He still tires and has pain in his legs - calves and quadriceps.  Not sure why still but that is one of the questions we have for Dr. Borrello next week.  This past week we made a trip to Johns Hopkins.  Don had to have blood work done and a bone marrow test.  The latter is always painful but he takes it all in stride.  He knows he has to do it so no complaints from him, ever.  We do go back next Wednesday and we will meet with Dr. Borrello and Don will have another phase of the vaccine shots that is part of the trial he is doing with Dr. Borrello.  Don is supposed to go back to work in 2 weeks.  Not sure right now if that will happen.  From all that we've read it really could be too soon - we just have to wait and see what Dr. Borrello says. 

I'll come back soon to let you all know how our appointment went.  I'm sure everyone is preparing for the Christmas holiday - a busy busy time for everyone!!

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

Until next time.......

Love you all!

Don & Muffin

11/28 - Saying hello

Thought I would let everyone know how Don is doing since I left you last.  He is improving day by day.  He still continues to get dizzy sometimes when he gets up or bends over.  If you remember his blood pressure was so low many times we had to go over to IPOP for blood work.  It was still low when we left Baltimore but the doctor just said he had to be careful when he stood up or was laying down and got up - we still wonder what was causing this but no one could ever really give us a good explanation.  Well any explanation for that matter.  So he is just careful and always aware of his position so he can raise himself up slow.  His eating is improving and he is getting his taste buds back.  He's not totally there yet but it is improving.  We take turns driving - oh happy day haha!!

We had a wonderful Thanksgiving with our family.  My daughter cooked the turkey and everyone else brought the sides so it really worked out great that way.  We were able to spend time with our future son in law's parents and that was wonderful.  We did miss our son Brian - his family couldn't make it to dinner as Raelynn had just had her tonsils out.  We did see them early that day so we were happy with that :):).

I return to work tomorrow after being out since September 20.  Will be nice to see everyone but I will miss Don terribly :(.  I know he will be okay since Gram is here and his brother lives right down the road and gets off work early in the day -  so if he needs anything they will be right there.  Of course, if he needs me it won't take me long to get home.

Okay everyone - I'll be back in a few days.  Just wanted you to know how Don is doing.  He does have 2 appointments scheduled for December.  The next one is another bone marrow test which he isn't looking forward to :( - can't say I blame him. 

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

Until next time......

Love you all!

Don & Muffin

11/22 - Catching up

Thought I would say hello and to let you all know about the past few days – I think I left here on the 18^th.  We are enjoying being home so much.  Don is getting a little better day by day.  He’s been doing some light painting on trim for our new deck door that Don’s brother and friend put in while we were gone.  We love it!!  Today we cut the grass – Don would do a couple of strips and then I would – we kept doing that and it got done and it didn’t wear him out – me, well that’s another story haha!!  I got to drive our small rider lawn mower that Mark our son had gotten Don a couple of years ago.  Oh we pushed the front and part of the back but did use the rider to bag some leaves and then to mulch part of the yard.  There were leaves everywhere!!!  I was on the rider and the clothes line poll jumped right in front of me *LOL*.  Yeah okay I kinda hit it – not hard but enough that I got stuck.  Wouldn’t ya know it – Don wasn’t outside so I just sat there cause I couldn’t get it in reverse.  It actually was kinda fun riding it – better than pushing the whole yard, for sure!!  I’m actually looking a little forward to hopping on the rider again and see if I can get some wheelies going – hahaha!!!!

We found out Don can start exercising again – he will take it slow and easy but it was great hearing he can start again.  Of course the doctor stressed to take it easy – no worries about that.

We are going over to our daughter Kristi and future son-in-law Charlie’s house for Thanksgiving – we can’t wait for that!!  Hope there are lots of leftovers!!!

I go back to work on Monday, the 29^th.  I wish I could say I am looking forward to that.  I mean, I do miss my friends at work and it will be great to see them all.  It will just be so hard leaving Don L.  One positive thing is Gram will be here with him so I know she will take good care of him.  It will just be hard – but he knows I’m just a phone call away and if he needs me I will be home before he knows it.

Okay everyone – Don and I would like to wish you and yours a wonderful Thanksgiving.  I’ll be back to let you know how Don is doing.  You all can write me anytime and I mean that sincerely – or call us!!!

Keep the prayers coming – we still need and appreciate them all!  Another prayer request please - our granddaughter Raelynn is having her tonsils out on Tuesday - tomorrow actually - please pray all goes well and she gets all better soon!!

Until next time…..

Love you all!

Don & Muffin

11/18 - Catching up!

Didn’t realize it had been 3 days, well almost, since my last blog.  Thought I would get you all caught up with us J.  Trying to think back 2 days ago – those that reallllly know me know I can’t remember what I did hours ago much less 2 days ago *L*.   You think I’m kidding?  Ask anyone!! 

I left you on a Monday – Tuesday as I remember was another day of Don getting a little better day by day.  I honestly think at this point in time it’s going to take longer than either of us imagined .  He is getting stronger each day but he is far from doing the things he used to do strength wise.  He tires easily and that will take a lot of time to build his body up to where it was before all of this.  We KNOW he will – we just don’t know when.  I guess we just can’t put a date on that one.

Today was our visit at John’s Hopkins.  We left Wednesday around 4ish.  Lucky me got to drive up to Baltimore for the first time.  Oh boy.  I tried not to think about it Wednesday morning but as the time got closer I could feel the nerves coming.  I know, no big deal a lot of you might say to yourself.  Well for me it was a big deal cause I only drive when I have to – to work – home from work.  Yep that is pretty much IT for me *L*.  Don drives us everywhere!!  And I mean everywhere!!   Anyway – headed up to Baltimore.  Our FIRST mistake was not leaving sooner before dark came.   It was dark by the time we got on Pratt Street.   We couldn’t see where our hotel was – great haha!!  We didn’t bring the GPS which would have told us EXACTLY where it was and Don didn’t have his regular glasses – just his sunny’s!!  FUN FUN FUN!!  We found it fine but of course I was a little testy by the time we got there *L*.  Parked fine and got checked in – beautiful room!!

This brings us to today – going to post what I emailed the kids today:

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Back home now - what a trip.  Last night wasn't too too bad.  Should have left earlier though - as we got onto Pratt Street we didn't know where the hotel was - and it was dark.  Dad didn't have his regular glasses so that was pretty interesting.  We found it though and parking was easy.  Room was so nice - just kinda dropped everything on the bed and headed out to dinner - it was good but the cheesecake was the best part haha.

Got up this morning and headed to JH - that was really easy too.  Time wise everything was going pretty much on schedule. Dad was called back to get his blood work done.  I was called back which I thought was unusual.  I didn't know at the time what was going on.  When the lady went to take Dad's blood she was having hard time getting any blood out of the catheter.  Dad at that point became very dizzy and left side was super weak.  She, of course, stopped immediately and got someone to help him to lie down on a cot.  We're not sure what happened but the Nurse Practitioner said it could have been because of the flushes the lady taking the blood was doing (she couldn't get the blood out and was flushing to try and unclog the blockage if there was one) or the direction of the tube in Dad's neck could have changed cutting the blood supply to his head - it was a scary time for Dad and I wasn't in there with him :(.  When they called me back Dad was visibly shaken up.  They did take blood but just took it out of his arm.  He laid there for awhile and Amy (NP) said the location of the catheter removal was changed from where we were to upstairs in Blalock 5.  So up we went - Dad had to use the wheelchair - they surely didn't want him to walk.  Got up stairs and had to wait for a bit.  They called Dad back and it was probably within a half hour they called me back and he was done and we were on our way.

Drive home was a breeze except for 2 idiots in Baltimore honking at me - still can't figure out why haha - I think folks in Baltimore just have a thing about honking their horns!!

We stopped at Burger King on the way home - Dad wanted a whopper Jr.  We just sat and ate in the car.  Stopped at 7-11 and now Dad is home with his heating pad and just happy to be home!!

Don is doing well this evening – I think today’s events are still fresh in his mind.  We just can’t help wondering what really happened today?  We would like to believe it was just a strange turn of events with the catheter – we really WANT to believe this.  It still just makes us wonder.

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

Until next time…….

Love you all!

Don & Muffin

11/14 MMRF Walk/Race and 11/15 Monday

Thought I would catch up from yesterday and today. The MMRF race/walk was held yesterday (Sunday) in Virginia. What an awesome turnout!! We had over 50 participants as part of our HOOD STRONG team!!! It was so wonderful to see so many from our family and friends come to this spectacular event. Don and I were so proud to be part of this and the love shown by those who came to support him and MMRF was just so heart warming. We thank everyone from the bottom of our hearts! We love you all! :):):):):). Don did take a few race steps with our daughter Kristi at the start – he said he was holding her up so he told her to get on with it!! And she did – she did a wonderful job as well as everyone on our team. Don will no doubt be one of the runners NEXT year – we know he will!!


Today was a good day – Don is slowly getting his strength back. He went through so much these past 6+ weeks and I think even he is surprised at how long it will and is taking him to get back to feeling normal. I told him to think about where he was a few weeks ago and see where he is now and from my point of view he’s come a long way and I see him only getting better and stronger in the weeks and months ahead!! He’s just being a bit impatient but I understand! We took a good walk down the road today – each day he goes a bit further and further. We have appointment on Thursday to get blood work done and to meet with an associate of Dr. Borrello and to get his pheresis catheter taken out. I know he’s looking forward to that.

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


Until next time ……

Love you all!


Don & Muffin

11/13 - Good day!

Had a good day with Don.  Didn’t do too much – but for now that’s the way it needs to be.  He is slowly getting his strength back.  It’s going to take awhile - which I think he’s starting to get a little impatient knowing that.  But right now his body is telling him he has to take it easy – it WILL be different in months to come.  It won’t be long before he’s able to gradually do some of the things he used to do.  I know he misses running so much and exercising.  He tires so easily now even just walking around but, again, that soon will change.  We did get to the grocery store, CVS and Staples. 

I might start blogging every other day – still haven’t made up my mind yet.  Like I said yesterday I know there are many friends and family that have followed this blog faithfully to see how Don is progressing.  The blog sure is different now in that it’s not filled with our daily activities over at John’s Hopkins.  Believe me I’m NOT complaining about that.  We’ll see how it goes – but just wanted to give everyone a heads up that I might do that – so if you don’t see one every day, don’t worry – I will be back!

One thing I did want to say – information was sent to a lot of folks about the MMRF race/walk to be held on Sunday, November 14.  WE will be there.  Don, of course, isn’t walking or running – but believe me – IF he could no one could stop him.  Right now we have 49 people signed up for HOOD STRONG (which is the name of our team).  I know there are some that will register when we get there in the morning.  But this will mean over 50 people will be part of our team and Don and I couldn’t be more proud and happy for this turnout.  Also – a goal of $2,500.00 was set to raise money for MMRF.  As of tonight the total amount raised so far is $4,055.00.  Now tell me that isn’t AWESOME??? JJJJ.  We had a fundraiser that involves the MD Lottery – every night in November there is a pick 3 # drawn.  Whoever has that # is the winner for that night.  There are several people so far that have donated their winnings to MMRF so I’m sure the total will go UP!!!  I am just so happy that Don and I are able to go to the event – a few weeks ago we had our doubts and Don was clearly upset with knowing it was a possibility we wouldn’t make it.  I know with our prayers and yours GOD listened and through him all things are possible!! JJJ

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

Until tomorrow…..or next day……..

Love you all!

Don & Muffin

11/12 - HOME SWEET HOME

Our first full day at home since we left almost 6 weeks ago - was a quiet day - one that we enjoyed tremendously.  We didn't have to get up early early and walk or ride over to the hospital. Don still had to take medications - but this will continue for 6 months or longer - he ate really good and of course I was after him all day to drink drink drink - he kinda groans when I say "what do you want to drink" - but that's cause he's kinda getting tired of everything - but doesn't stop me haha.  If he doesn't answer right away I just go grab something - he knows he has no say in the matter I guess *L*. He did great with everything - walked up the steps from the basement a few times as well as walked around the house.  It was early afternoon and he said "do you want to take a walk?".  Can't believe he beat me to it!!

We had a nice visit from our nephew David - was great to see him - what a wonderful young man he is :).

Don's sister Ellen came after work and fixed us a wonderful dinner - well she did the chicken and Gram did the veggies - it was soooo good. 

We are looking so forward to Sunday for the MMRF race/walk.  Don and I will be spectators but we have so many family members and friends participating - Don is just so so happy that he can be there for this wonderful occasion.  He kept saying in Baltimore how much he hoped and prayed he would be able to go.  We had our doubts at times but are just so thankful we are HOME and we are able to go.

Okay getting this posted.  Not sure how much longer I'll be blogging but I sure have enjoyed it - and I know there are so many people who want to know how Don is doing and this is a wonderful forum to do that - so we'll see.

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

Until tomorrow.......

Love you all!

Don & Muffin

11/11 - POSTING FROM HOME :):):)

What a great day huh? We were packed up last night and the excitement was just so overwhelming at times. We both just kept saying “we are going home tomorrow”. Just didn’t seem quite real after knowing what Don had gone through few weeks back.

Bri, Marko and Glenn came up to help us move. Well okay, we actually didn’t do anything *L* - I just pointed and said “yeah that’s gotta go, yep that’s going”. Let me tell you I’ve never seen 3 guys move so fast *L*. They were as anxious to get us OUT of there as we were to BE OUT of there.

Got home around 11:30ish – Mark and Bri did some yardwork for us which we appreciated so much :). The house looked absolutely wonderful – the carpets were cleaned and the house looked great. Thanks Elle and Gram :):)!! Louisa came with the girls and they bought lunch and we just had a wonderful visit. Kristi came after working half a day so she was able to see Bri, Louisa and the girls also. Marko had left as he had things to do at home. It was great to see them all!!

After they left Don rested. I went to Panera to pick up dinner – Don is feeling pretty good – just tired. It’s going to take him time to get his strength back but he will in due time. Stomach still not quite right but he said it’s getting a little bit better as time goes on. I have to later check on the areas where he got the vaccine yesterday. We have a chart we have to make comments on. The last time he didn’t have any problems so I suspect it will be the same this time.

It’s just so wonderful to be home – it wasn’t bad in Baltimore and we are thankful we were able to stay at the Hackerman since it was so close to John Hopkins but again there is nothing like home and we can’t wait to get into our OWN BED!!!!!

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

Until tomorrow......

Love you all!

Don & Muffin

11/10 - Short Visit & Packing Up :):):)

Won’t be too long of a blog today :) - we had 7:30 a.m. appointment this morning for blood work, bone marrow test and vaccine. We arrived on time as always – waited close to 45 minutes for technician to show up to do blood work. This, of course, delayed everything else but it worked out. We met with Anna Ferguson, associate who works with Dr. Borrello. She is the one that gives the vaccine. Don had the blood work done and Anna had to put a numbing cream on the locations for the vaccine to be given. She wanted to do this prior to bone marrow test because it takes about an hour for the numbing process to work. They numb places on your arm, and 2 places each on your inner right and left thigh. Don went up for bone marrow test – they extract the bone marrow just below the waist on the right side. Well not sure if that’s where they take everyone’s but it’s where Don had his taken from. It started out not painful but towards the end he was really feeling it :(. He’s quite sore right now and it hurts when he walks but he is working that pain out by walking. It kinda took a lot out of him – not as energetic as he was earlier but he rests when he needs to. After that test we met up with Anna and she injected the vaccine. Remember the vaccine is part of the trial that he is doing with Dr. Borrello. We had to sit and wait awhile to make sure he was okay. We talked with Anna and she told us of appointment next week – so we’ll be back up here on Wednesday. Hopefully with that appointment they will take out the catheter he now has – she wasn’t positive it will be done Wednesday but we are hopeful. If not – another date will have to be scheduled for that. We will be returning for more vaccines at 2 months and 6 months and I think a year.

We left Anna – she had so many words of encouragement and just delighted that Don has come through it all and is getting stronger day by day. We came back and Don rested a bit – started packing for our trip home tomorrow!!!!

They are having a turkey dinner tonight at 5 here at Hackerman so we’re going to go for that and then listen to music. Then back up to finish packing – Mark, Bri and Glenn will be here in the morning to get our stuff out of here – woohooooooooo!!!!!!!!! BRANDYWINE HERE WE COME!!!! :):):):):):) - okay I’ll stop now!! Haha

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

Until tomorrow………..

Love you all!

Don & Muffin

11/9 – No IPOP or HIPOP visit

Had a good day here at the apartment with Don. He’s eaten well, drank a lot of fluids and got some good walking in. Angie and Sam came for a wonderful visit and later in the afternoon
Dan came – I think Dan came straight from work which is about 10 minutes away – if that. It was great to see them all :):)

Tomorrow we go over to Johns Hopkins for Don to get a vaccine which is part of the trial he is participating in with Dr. Borrello. Not sure what else but we’re pretty sure there will be other tests. Just don’t know right now what they are.

Don is resting now – he never did lie down at all today so he’s a bit tired. He’ll just rest for a bit and I’ll have him up walking again – please stop he says!!! Haha – not really – he knows how important this is to get his strength back so he is more than willing.

Hoping tomorrow he gets released – at least for the time being. We, of course, will have follow up visits for at least a year. We are looking into finding an oncologist/hematologist close to home so the commute to DC doesn’t have to be made for his appointments.

Okay going to get this one done – pray all goes well tomorrow and we can begin packing for HOME :):):)

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

Until tomorrow………

Love you all!

Don & Muffin

11/8 - 9:00 a.m. - IPOP Visit

Got the morning off to a great start.  We WALKED over for our appointment!!  I was thrilled – a bit cold but still thrilled!!  Don did it!!  JJ 

We had Nurse Saundra – the sweetest girl.  She took his temp, blood work and blood pressure.  YEP YOU GUESSED IT – low again *sighs and L’s*.  He was hooked up for hydration.  We weren’t surprised – we are at the point where we expect it.

A CT scan was scheduled for today so he finished the one bag and we headed off for that.  Wasn’t gone that long and had to report back to IPOP.  Nurse Saundra had told Nurse Practitioner Swimmer that Don had walked over for his appointment and she was happy to hear that!!  Don’s potassium was low also but they asked if he would rather take pills or have the transfusion.  Well since the transfusion takes about 2 hours he said he would gladly take the pills.  Nurse Practitioner Mauro stopped by briefly to see how Don was doing – she didn’t stay long actually.  She made the comment that Don looked so much better .

Saundra changed Don’s dressing for his catheter.  Love when they do this!!  She said Nurse Practitioner Skinner wanted to see us so she let her know we were back from the CT scan.  NP Skinner said the results of the scan were great – no problems and commented on how good Don looked. 

Here is where it gets good!!! JJJ NP Skinner said she was going to make a call to Anna (who is Dr. Borrello’s assistant) and tell her Don would be discharged from IPOP!!!  Whoa baby!!!  Now isn’t that sweet music to your ears??  And ours *L*.  We are scheduled to go see Anna on Wednesday – Don needs to get the vaccine which is part of the trial he is doing with Dr. Borrello.  Our Nurse said she was certain there were other tests on Wednesday but she couldn’t be specific as to what they were.  BUT if all goes well on Wednesday (which we have faith it will) – it’s very very very POSSIBLE we could get to go home either Wednesday evening or Thursday!!!  Oh happy happy happy happy we are!!! 

Even though Don wants to be so excited,  he’s being cautiously optimistic – he just wants to be sure everything is fine for him to leave.  Believe me they’re not going to let him go if there’s a chance he isn’t.

Oh let me back track for a second – Don expressed his concerns to NP Skinner about his low blood pressure when we get home.  She said to just be careful when he stands up – no jumping up quickly – he has to drink lots and lots and lots!!  She said even though he has this low blood pressure there is nothing to indicate there is anything wrong – some people just have it!  Don told her he liked to run – and even though he’s not a marathoner or long distance runner he does run – and she said there are lots of runners who have low blood pressure – so in her eyes he is fine – he just has to be extra careful.

He’s eaten really well today and drank – can’t say a lot yet but the nights not over yet!

Even after being released we will continue to have visits and treatments for up to a year – so folks it’s not over yet!!

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

Until tomorrow…….

Love you all!

Don & Muffin

11/7 - 9:00 a.m. IPOP

Nurse Mary took Don’s weight, temp, blood work and blood pressure.  Yep, once again – blood pressure low L.  Hydration was started.  Nurse Practitioner Mauro checked his breathing and asked normal questions.  She asked Mary to recheck his blood pressure after the first bag of hydration to see if he needed another.  Even though there was a noticeable improvement they decided to give him another transfusion. 

Don took a good walk up and down the hall way while over at IPOP – 1000 steps – way to go Don!!  Doctor Kassemon came to talk.  She said Don needs to take all of this day by day and she knows there will be great improvement.  As she was talking and saying take this day by day I couldn’t help but wonder why Dr. Borrello had said last week that there was a possibility we could be going home this week?  Dr. Kassemon surely didn’t imply this at all L.  I am the last person to want to rush anything but I even think Don’s hopes had gotten up a bit with that statement from Dr. B.  But as Dr. Kassemon said we will take this day by day and hopefully it won’t be long.

She said the liver enzymes are gradually going up so they were not concerned about this.  They will repeat the CT Scan to just look at the spots found on his lungs few weeks ago.  Again, they’re not overly concerned but do want to check it.

Dr. Mauro came back in and said they wanted to do an EKG to see if there was any fluid around the heart.  Apparently this can cause your blood pressure to be low.  As she was ordering it she immediately said I doubt this is the case but we want to be sure.  Well EKG taken and as she had said – didn’t show anything.  She decided to check his blood pressure but didn’t hook up to the automatic machine – they did it manually looking at the monitor that was on the wall behind Don.  I thought it was taking a blood pressure reading and of course I couldn’t make heads or tails out of it – but I asked Nurse Mary and she said she wasn’t measuring the blood pressure but some other #’s that would indicate fluid around the heart – but again those #’s showed nothing.  One thing they are doing is TRYING HARD to find out what is causing his low pressure every morning we go over there – tomorrow Kristi suggested Don walk before we head over so maybe this will get his body moving and it will be good when we go – let’s hope so!!

Don ate really well today, drank a lot and walked a lot – so a good day for him.  After yesterday it was a great great great improvement.  Kristi and I both made the comment that Don looked like himself today – he’s been so tired lately and drained he just hasn’t acted or even to me looked like himself – but today he did which made us so happy!! J

Okay this changing of the clocks has made us both tired so it won’t be long!! 

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

Until tomorrow…….

Love you all!

Don & Muffin

11/6 - 9:00 a.m. Short IHOP visit

11/6 – 9:00 a.m. Short IHOP visit

Had Nurse Theresa again – same as yesterday.  Always nice to have the same – seems every day you get someone new – although depending on how many visits you get to go through the rotation of the ones you’ve had before.  I know I’m rambling here. 

His vitals were taken – temp, weight, blood pressure – yep you guessed it.  Blood pressure was low and he was hooked up for hydration.  Don was upset about this because he just doesn’t understand it – he drinks but I guess in order to keep from having the low blood pressure he has to drink gallons and gallons.  Theresa asked the normal questions – how he was feeling?  Drinking? Eating? Sleeping?  He had a rough night of sleeping so our day was off to a bad start.

Blood pressure was taken again around 11:04 a.m. and it was back up.  His potassium and calcium levels were fine and red blood count so no transfusions there – he was happy about that.

Dr. Kassemon did talk with Don.  She could tell he was clearly stressed today.  He’s just totally lost as to why he is feeling so poorly.  His energy level is still down – I thought it was picking up a bit yesterday but today he seems really down again.  She told him it is normal after a transplant for him to be having all of these symptoms.  He asked about his constant stomach queasiness – she again said it is perfectly normal after transplant.  She told him to STAY POSITIVE – he WILL get better.  Prior to her coming to talk with him I had given him my own pep talk – he said he prays and prays for God to help him feel better but he wasn’t listening to him.  I know I’ve struggled with that thought myself but I truly believe in my heart he listens to all of our prayers.  Don could be a lot worse than he is and this is just a temporary setback.  I believe that in my heart.  I told him this and I think it helped – I sure hope so.  I said please don’t stop praying – God listens to everyone!!

Don has eaten fairly well today – for dinner he had banana and peanut butter sandwich and some chips – I know I know – doesn’t sound like dinner food but hey whatever he wants is fine with me.   He said he would have some choc junior cupcake later and maybe some ice cream.  Hmm not sure – this might be a bit much haha but we’ll see.  He did walk over at IHOP and before eating he walked out in the hall.  Not sure if he’ll do anymore but I will definitely try!

I hope he sleeps better tonight – I know when he does he seems to start off in a more positive frame of mind.

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

Until tomorrow……..

Love you all!

Don & Muffin

11/5 - 9:00 a.m. IPOP Visit

Our Nurse today was Theresa.  She took Don’s weight, temp, blood pressure.  Because it was low again sitting she took it standing – low again L.  He was hooked up for hydration not long after we got there. 

We were going over medications with Theresa.  I asked her about one that Don had been taking called Reglan.  It is primarily for nausea but when Don was having problems going to the bathroom – yeah I know big switch from last week – one of the other Nurse Practitioners had increased the dosage to 3 times a day.  Well he isn’t having any problems now so I asked if he had to continue?  My feeling is if he doesn’t need it don’t take it!!  After Theresa consulted with Nurse Practitioner on duty named Dr. Swimmer he was taken off of it.  Thank goodness!!!

Had a surprise visit today from Dr. Borrello.  With Don taking part in his trial we asked about one of the vaccines he needs to take.  Because Don has been feeling so bad they postponed it from last Tuesday but will do it this coming Tuesday.  He gave us some great news – but we don’t want to get overly excited about it – but he indicated if Don continues to eat, drink and sleep better we MIGHT be able to go home in a week or so JJJ.  This depends on a lot of things - so as much as I want to be so so so thrilled about this news – we have to wait and see.  I do have to say, when Don heard the word HOME he is just so determined now to make sure he eats more, drinks more and walks more to get his body back to a good energy level!!

He did eat well today – not a lot at one sitting but several different times and he drank alot as well.  When we were over in IHOP he walked quite a bit.  His goal for Sunday is to walk over to our IHOP visit *woohooo*!!!  I miss that.  We were walking over to all of our appointments – but then he got sick so now we’ve been driving this week because he’s still been so tired.  But this is improving and I’m optimistic he is going to greatly improve!!

The day was getting late – Nurse Practitioner Swimmer decided late that she would order red blood for Don.  So that made our day later but it was fine – the counts showed the red blood count was low.  We were just surprised she waited so long to order it.  Just made for a long long day for us – got there at 9 and left at 4:15 p.m.

They did a blood pressure reading before we left and it was much better – just pray tomorrow it’s good!!!

Okay Don’s walking around the apartment here – so I’m going to go get him to maybe walk down the hall!

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

Until tomorrow……..

Love you all!

Don & Muffin

11/4 - IPOP

Don did sleep better last night – 6 hours one time – 3 hours another – that’s the most in awhile.  He still needs medication to help but that’s okay – hopefully when he gets home he won’t need anything.

9:00 a.m. –Nurse Kathy temp take, blood work, weight, blood pressure – as soon as blood pressure was taken he was hooked up for hydration.  There’s no explanation yet as to why his goes down .  They take it in a sitting position and then standing.  It’s when he stands it goes down.

We saw Nurse Practitioner Mindy – she asked the normal questions.  As soon as they see and talk to Don it’s clear to them that something is not right – something is going on.  She suspects there is an infection somewhere so she ordered more blood to be drawn and wanted a urine sample.   Dr. Kassemon also came to see Don.  She said it was possible the steroid level was low so wanted this run as part of the testing of the blood.  She also made the statement if the white blood count is too high that could indicate a sign of infection – confusing to me – I thought the higher the better.  Back to the steroids for a minute.  The injected a small dosage of steroids to see the body’s response to them and to see how his adrenal system was working.  They waited half hour after this and drew more blood.  Tests results came back – steroid and hormone levels were fine.  No problem there; and urine sample showed nothing either.  They will repeat CT Scan on Monday – Don has some small spots on his lungs they have been monitoring – the want to have another scan just to recheck them again.  They honestly feel there is nothing to be concerned with – it’s just a check.

This all is leaving the doctors just wondering.  At this time they can’t find infection anywhere – thus no one can explain why Don feels the way he feels.  I think they want to say it’s due to stem cell transplant, the melphalan (high dose chemo he got prior to transplant) and the 8-day stay in the hospital which totally kicked his butt.  I guess being in the medical profession they HAVE to come up with a medical reason for everything.  I’m inclined to think it’ for those reasons I stated but then again – if these symptoms now were totally normal then why can’t they just come out and say it?   Not sure what other tests they can possibly take to find out a medical reason but I guess they’re not finished yet trying to find the reason.  I guess tomorrow we get to see what they come up with.  I’m very curious.  All I know is he is miserable and I’m miserable seeing him like this and feeling helpless in the meantime because I can’t help him and make him feel better.  Not a good position to be in.

We did have a Discharge Class today – normally I would have been beside myself with excitement because you normally don’t have this class unless your time is due to end in IPOP and that means you would be going home SOON.  But – we had to have the class – it’s just part of the routine.  And they get to check it off their to do list.  I know they won’t be releasing Don until they find out what is going on – I pray that time comes soon.

1:30 – We left IPOP – Don rested a bit when we got back – not for long – I wanted him to eat a bite of something.  He ate a little and laid down as Mark and Brina came to visit.  They brought us some great chicken soup and tacos and a few other things.  It was wonderful to see them – We miss our family terribly.

Almost 8 p.m. - Don is resting again – will get him up soon to have something to eat.  I don’t know what tomorrow brings.  I honestly don’t – just pray he feels better.  Pray for the doctors as well.  I know they are trying.

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

Until tomorrow…….

Love you all!

Don & Muffin

11/3 - HIPOP visit 9:30 a.m.

Temp and blood work taken – blood pressure as well.  While sitting BP was okay but as soon as he stood up it went down again L - so as soon as we got him in the bed they hooked Don up for hydration.  Nurse Practitioner Kelly was there early today – asked her normal question, checked his breathing.  She asked about his eating and drinking.  He’s been eating and drinking but she feels if he could increase the intake of both it might really help getting his energy back which is still very  very low.  Another Nurse Practitioner came named Mindy – she agreed with Kelly and also encouraged Don to do more walking.  They both know how difficult all of these are for him right now but sincerely feel if he tries it might help get his recovery back on track. 

After blood work came back he was given Potassium – low again.  While there he did eat rice krispies, some pop tart and some graham crackers.

We had Nurse Chris again – very nice young man.  He changed Don’s dressing on his catheter so I didn’t have to do it – which I always like – not that I mind it – well okay, so I do, sorta kinda – it’s just nice that they do it for me.  He also flushed the lines so I didn’t have to do that either.

We got back around 1:45 p.m. – not a terribly long visit but long enough.  I went to 7-11 and Don rested. 

Gram, Kristi and Glenn came to visit – they had planned on coming Monday but Don just wasn’t up to it.  Gram had brought Don chicken soup that Karen had made – he did eat some and almost finished what I had given him which made me happy!!  We all walked a bit and went downstairs to show Glenn around. Glenn saw some stairs while downstairs so he said to Don – let’s take a walk up the stairs.  I thought Glenn was crazy haha – no not really – but I did think Don would say I’ll pass but he went up them .  We all wanted him to do it again but the fact he did it the first time made us all happy campers!!!

I think it’s time to get in my b!tch mode folks (who moi??)  – or guess I should say “nag” mode.  He needs to eat more, walk more and drink more – I, along with everyone else, feel this is what needs to be done in order to get him to a place with more energy which will lead to US going home.  Believe me he knows this – and he wants this – it’s just so so hard for him right now because of the set back of being in the hospital for 8 days and being totally drained of all of his energy.  But believe me I will do what I can to get him going – not that I haven’t tried – but tomorrow is a brand new day and I will constantly remind him of what he needs to be doing to make all of this happen.  WE are so ready to go HOME!!

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

Until tomorrow…….

Love you all!

Don & Muffin

11/2 - 9:30 am IPOP Appt

Temp checked and blood work done. Blood pressure taken – temp was good – blood pressure low again so they hooked him up to hydration.

Nurse Practitioner Kelly came rather early and talked w/Don. She asked about his nausea. He still continues to have an upset stomach – not a lot – but enough that he’s aware of it and it bothers him. She had Zofran hooked up to IV. She told him if that didn’t work she would try Protonix. Well neither of them worked so we’re back to square one. Don said tonight maybe I feel nauseous because my stomach is so empty? He hasn’t eaten very much past few weeks so he may have a point. But the doctors are trying but not with any good results.

He did eat some pop tart, banana and corn flakes while in IPOP – not a lot of each but to have 3 different things is great!!

I talked w/Dr. Borrello briefly when I was downstairs. He’s convinced if Don could start eating more this will help tremendously with getting his energy back. Nurse Practitioner Kelly also said the same thing earlier and she also wants him to drink more. So I think this has been stressed to Don – he really needs to eat more. Believe me he has tried – but when your stomach is constantly nauseous I can’t say I blame him at all – but he is really going to try.

We left around 3:30ish I think – I forgot to write it down.

I went to Safeway around 5ish – when I got back I fixed Don some baked potato, green beans and apples. He did pretty well – I was happy. I asked him how his stomach felt? I wondered if it felt upset from eating but he said no – so maybe we’re on our way. I sure hope so.

He’s going to bed soon – he slept fairly decent last night – 4 hours – potty – then 4 more hours. What a great improvement over what he has been doing. He does need something to help him sleep but if that is what it takes – that’s the way it is.

I honestly feel if he continues to eat more and sleep more he will be feeling better in no time – and THEN maybe we can be thinking about going home. How wonderful that would be.

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

Until tomorrow………

Love you all!

Don & Muffin

11/1 – Long visit to HIPOP

Day started at 9:30 in HIPOP – Our Nurse for the day was Lovina.  New face – a very nice girl.  Took Don’s weight – took blood work.  Didn’t take them long to start hydration as BP was already low.  I don’t know what it was as I had gone for coffee.  Met a very nice lady whose husband is at Johns Hopkins for leukemia.  I’ve met a few ladies and all here for a different reason.  I knew there were a lot of cancers out there but meeting these different women  and hearing bits and pieces of their stories just make you realize there are so many people out there just like them and now us and it’s heartbreaking to say the least. 

Blood work was done and blood pressure taken – hydration started due to low blood pressure and after blood work came back Potassium was given as well.

Nurse Practitioner Kelly came – we hadn’t seen her in awhile because of Don’s recent stay up in 5B.  She was happy to see Don.  Asked her normal questions and did her checking of breathing and swelling.  Don had told her of his problem sleeping – she suggested we try another pill Ativan which we had from before.  Let’s hope this one works a bit better for him.  Don told her he was having trouble going to the bathroom – what a switch from last week when it was non-stop.  He has this herbal medicine call Senekot that he’s taken before with results so she said sure it was fine to take this.  He will try this tonight or first thing in the morning.  A CT scan is ordered for next week – they need to check on the spots they found on his lungs from previous CT scan.  He was given an anti-fungal medication for this but it was causing a spike in his liver counts so they discontinued the medication.  The counts are getting better but they want to redo the CT scan to keep an eye on the spots. 

1:30 p.m.  Still here in HIPOP – was hoping for an early in and out but that didn’t happen.  As we were sitting there Dr. Borrello came in – Myeloma Specialist.  We had been trading emails as we had some concerns and he said he would stop by which he did.  He could see that Don was totally and completely wiped out.  Last week surely took its toll on him.  He said with Don’s counts the way they were, IF he was feeling better he would be ready to go home.  The counts are going up up up!!   Unfortunately that doesn’t seem likely for awhile L.  Dr. Borrello said if Don could start eating a bit more, sitting up and trying to walk more it might help speed up his recovery process.  AND if he could get some sleep that would definitely help.  I told Dr. B of the CT scan ordered for next week – he said it was just a precaution and he wasn’t concerned with the liver spike because the numbers were coming down and he was glad he wasn’t taking the medication anymore.   I think the goal is to get him OFF as much medication as they can – I can’t help thinking this will help make him feel better.  (My personal opinion).  Dr. B is hoping this all goes away in a week or 2 at the most.  GOSH I sure hope so.  He also said he thinks there is NO issue with a fungal problem on his lungs – I think he’s felt this way all along but says we should wait and see what the next CT scan shows.

2:20 p.m. – took his blood pressure again – sitting and standing.  Still low, VERY low so they drew blood again.

3:55 p.m. -  Due to blood work results he was given Calcium.

5:00 p.m. – We left to go back to Apartment.

Needless to say – it was a long long day.  If it’s possible Don is even more tired.  After lying on the bed for almost 8 hours I guess anyone would be.  He tried to eat some potato soup when we got back – not right away – he did lay down for a bit.  But anyway, he tried and said it was awful.  Nothing tastes good to  him – hoping that changes soon and quickly.

It’s past 9:00 p.m. now – he’ll be taking something soon to help him sleep.  I pray it works.

Tonight Don said “I want to go home” – first time he’s actually said it – I’m sure he’s thought it but never said it.  He’s just sick of feeling sick.  I wish I knew what to say about all of this right now.  I know his body  has been totally messed up past few weeks with diarrhea and not sleeping.  Well the diarrhea has stopped but he still isn’t sleeping.  Now he has the low blood pressure.  That  started in the 5B and now 2 days going over to IPOP and HIPOP.  I pray pray pray hard this doesn’t continue.  If it does – I just don’t know.

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

Until tomorrow…….

Love you all!

Don & Muffin

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:
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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.

----------------------------------------------------------------------------------------

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