Celebrating Royal City and a little about Terry's counts

We went to the Royal City community day parade this morning.  SUMMERFEST!

Anthony marched in the band, playing the drums - he is wearing white framed sunglasses, khaki shorts, and black and white shoes.

This guy got us wet!
And we thought he was our friend!  ;)

Hmm, I guess he is ..., it actually cooled the area nicely.  It was a warm day and this little sprinkle of water was refreshing.

Here is another friend - an awesome young man!

We missed a few other friends, but here is one more ...

We didn't stay for any of the other events because we have to be more and more careful with Terry's health since he has no infection fighting properties. His white blood cells are 0.1, and his absolute neutrophils are 0.0 - these numbers aren't small, they are non-existent.  We know what it's like to suffer from infections and we don't want to do that again.

The red blood cell count is not too bad since he gets transfusions twice a week.  This is what gives him more color too.

The platelets count went up slightly, from 2 to 6.  We were surprised that the doctor thought 6 was good enough and they didn't give him platelets Friday.  It used to be if he was under 10 he got platelets.  If he was going to have a procedure he had to have even more.  For his sinus operation last fall he had to have over 100, so they transfused platelets to get him there.   These numbers are still so low that we are always careful to make sure he doesn't fall or otherwise cause any bleeding, because it's not likely that it would stop if it began.

Lastly, Boston got his first taste of popsicle today. 

His grandpa got to feed it to him, and he seemed to enjoy it ..., wanting more.  Grandpa held him for the first time today too.  He tried to stay away from the babies while he had the infection, but he's free from that right now, so today was the day.  Both seemed to enjoy it.  ;)

Haying ...

The last three nights have been sleepless in Royal since second crop alfalfa began on Monday at our farm.   We have no photos to document the occasion, except for some Chase took while on the tractor during the night. I stole one of those from facebook to add here -

What a sky that is!

And, here is a photo from Thomas' phone, where we can see three of the six tractors/balers in the field.

The colors in these photos are oddly amazing.

While many were out in the field, some of us were inside sleeping.  With all the extras added to our calendars we didn't get to see the grandkids for very long, but they went to sleep here and woke up here. 

One night when Boston woke up (at 4:30am) Terry and I talked with him and had a fun several minutes while waiting for Dana to come in.  He was smiling and we were enjoying the moment.  We almost blew it because we woke him up so that he didn't go right back to sleep, but he was good and just laid awake quietly until he fell asleep again.  Lucky!   The next night we tried to not talk and play with him, and he did go to sleep better that time.    He is such a good little boy.

We love to see our grandchildren and enjoy time together.  It's fun to have them wake up at our house ..., it makes us all smile. 

We are done for this round, and everyone looks forward to some rest now.  And we also look forward to the next cutting.  ;)

Visit and Transfusions

Today's doctor visit was as usual - things are pretty much the same.

The white blood count hasn't changed the last 5 visits - WBC = 0.2(LL), normal is 3.6-11.3

Reds are still low, but the transfusions bring those numbers up a bit - RBC = 2.31(L), and he had two days of transfusions last week. normal is 3.72-5.85

HCT = 20.1(LL), normal is 36.9-49.9

Platelets this week surprised me at a whoppin' 2.  Platelets have been 3 and 4 the last 5 visits and he had two transfusions last week to help the numbers but it's still at it's lowest. 

Absolute neutrophil count remains the same for four weeks in a row. ANC = 0.0(LL), can't go down from there, so things can only look better for this, even if it returns to highest count on record for the last 6 weeks, and that is only 0.1(LL).  normal ANC is 1.2-8.0

Terry has more color in his face due to the red blood cell transfusions.  He's getting 3 units/bags of reds twice a week.  He receives one bag of platelets twice a week, but the platelets are still so low that he bruises easily and we need to remain vigilant in making sure he doesn't fall or otherwise get hurt and have internal bleeding. 

Our wait for blood products this day was maybe an hour and a half, and once we got started they kept coming, so things went pretty well.  We entered the room a little before 10:00am and left a little after 5:30pm, getting home about 7:00pm.  It was still a long day because our first appointment was at 8:30am, but we've had longer, so this was a good day.

We will do it all again on Friday and then start chemo next week.

image from here

I think we missed this exit somewhere, years ago.

but even then, we are happy

 

image from here

 

 

 

Perfect Pictures!

I was cleaning this morning and saw these cute pictures that we received over the last few days.  I should have added them to a couple of my recent posts, but since I hadn't already done that I decided that now would be a good time to share them.  They make me smile!  Maybe they will make you smile too!

Auger drew and painted the semi truck and trailer and Akleigh painted the Up, up and away for my birthday.  Claire created the sticker/handprint page for us.

We love our grandchildren!

Independence Day!

We enjoyed our Royal Wards flag raising ceremony and breakfast this morning (but didn't take a picture).

We then enjoyed a visit with family ...
Here are four of our ten beautiful grandchildren.

We played with a few pop its and small fireworks ...

We had lunch ...

 

We also relaxed and watched a bit of TV.  Later the boys tried a few more fireworks, then went to bed.

We try to not add too much to our days anymore, so there was nothing fancy today, just a relaxing day after our long day Thursday. 

It's a great day to have a great day!

 

from here

AND WE DID!

A Long Day!

Terry is having two days of transfusions a week, starting this week.  So, we all went Thursday for that appointment.  The kids and I did some shopping while Terry was in getting the blood products.  We left his room a little before noon thinking he would get that blood started anytime, and learned that he didn't get his first bag started until after 4:00pm.  Oh Bother!

We were hoping he would be done around 5:00pm, but that wasn't going to happen - he didn't get done until after 9:00pm, so we were late getting home Thursday night.

I don't know why it should take over 4 hours to get a bag of platelets or red blood cells, but it did. 

Terry's platelets were 3(LL) before transfusion Tuesday and had only gone up to 4(LL) when checked Thursday before transfusion.  That was a big surprise because we thought platelets infusions raised that number by at least 10 to 16 each time.  I guess they don't last very long.

HCT went from 19.5(LL) on Tuesday to 23.6(LL) Thursday, but of course there was no difference in the WBC that remained at 0.2(LL). 

There really is no good news at this point, except that Terry is fine.   



image from here



:) Day!

I had a birthday!
We followed tradition and had cake and ice cream for breakfast.  Anthony even added the candles for me to blow out.

We have all enjoyed having Chase home ...

We also enjoyed a visit and meal with Terry's siblings and their spouses ...
We are missing the Hebdon reunion this year because of Terry's concerns and needs, so it was nice of them to come visit for the evening.

image from here

Medical Report

We went to the doctor today!
We knew Terry needed his weekly transfusion of blood products because of all of the signs telling us so.  When the platelets are low (to none) it begins to tell on itself by sending little red spots all over the body (some big ones too) and that was happening worse than ever for Terry this week. He had no energy so that walking was difficult.  We knew he had to be careful with any movement so he wouldn't fall and cause any internal bleeding since he is so lacking in those necessary platelets.

We asked to begin transfusions twice a week now due to the tell tale signs of need.  He needs so much of so many things.  We wish we could get white cells too, but I guess those would just cause the MDS to worsen faster.

ANC is 0.0 - yip you can't get any lower than that. 
Platelets are 3 and that is probably because they can't count much lower than that.
WBC is 0.2
RBC is 2.19 - I don't know what they'd be if he didn't get two bags every week.
HCT is 19.5
HGB is 6.7

Terry has mentioned several times that he is living on borrowed blood.  He certainly doesn't create any of his own right now.  Today he received 3 bags of red cells and one platelets.  He will go in on Thursday for more.

Anthony went with us today and spent some time with his cousins and with us at the clinic hospital. 
I did a little shopping while Terry was sleeping.

Well, that's our day in the medical field.