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