"Does this Hurt?"

Good morning everyone;

Another uneventful night last night. Denise characterized it as having slept well, so good for her.

Doctors came in and said everything is looking good from blood and vital signs, and sort of gave us a preview as to what to expect next.

Will finish this particular chemo tonight, then they will come in and take some blood work around 3AM Sunday morning. Then around 6AM she will get a 1 hour IV drip of this new drug, and once again on Monday morning. Tuesday will be the transplant, which involves nothing more than an IV delivery of the donor's marrow (bless them). Wednesday and Thursday will involve no chemo, and then Friday and Saturday will have some more chemo delivered which is necessary to prevent Graft Versus Host Disease.

At that point, we (actually, Denise) are done with the chemo, and then will enter a phase of extremely close watch for infection, possible lung and liver issues, and also start looking for blood counts to start moving up. She will also probably feel her worst during this time, but maybe we will get lucky and the effects will be mild.

Now, about the subject line of this post. Young Dr Kildare came in early this morning and took his finger and poked Denise right where she had stitches from the surgery for the Hickman catheter and asked "Does this hurt?". Denise grabbed his hand immediately and gave him a look that would kill.

Fortunately for the aforementioned Dr Kildare he was not standing at the foot of the bed where Denise's feet were, for if he had, he would no longer be able to father children.

So, that's the update for today, and I don't expect anything new to pop up throughout the rest of the day. If something of interest does come up, you will be the first to know.

Finally, you know you want the factoid for the day, so here it is. Many of you, and especially your children, are suffering from Nomophobia -- The fear of being without your cell phone, or "no-mobile-phobia".

Uneventful!

Not a bad day...Maybe a little boring....A few naps (kips, for those of you in London and Sydney). Did 10 laps around the wing, so now we are up to 2/5 of a mile!!

Also received our schedule of the days to come. Tomorrow is the last day on the chemo drug Denise has been taking. Then we switch to another one for 2 days, and if all goes right, Denise will have her "second" birthday on Tuesday the 21st.

We are most thankful there have been ZERO side effects so far, and keeping our fingers crossed it stays that way. And thanks to all of you with your supportive emails and text messages

Friday Factoid: Dalmatian puppies are born completely white. Their trademark spots emerge a couple of weeks after birth!

Follow by mail.

Just an update for those of you on the go, There should now be a box to the right that says "Follow by Email". If you enter your email address, you will automatically get updates via email whenever Denise or I update the blog. You will receive a confirmation email to confirm this is what you want to do, but once you do, you will be notified via email of any changes.

Steak was delicious! All is well (and quiet)

Not much to report at the moment; they decreased the amount of chemo, which is a good thing I guess. Lot of interruptions thru the night so sleep wasn't the best for Denise. She is off the measured 4 hour "no-eat" window, so that's a good thing. We also walked 5 laps around the floor, which isi supposedly 1/5 of a mile. Since she is napping at the momnet, probably will try for 6 laps later this afternoon.

One more thing: a few have asked about the mailing address here to send cards (live flowers and plants are NOT allowed). It took a while to get the info, but here it is:

Johns Hopkins Hospital/Weinberg Building
Attn: Denise Lastname - 5B Room 11
401 N Broadway
Baltimore, MD 21231

Just remember we should be out of the hospital as a full time resident around 3/15.

And another factoid: Did you know Hawaii has more miles of Interstate highways than Delaware? Yep, 48 miles vs 40.6

Steak and baked potato tonight?

Uneventful day so far..forgot to mention earlier Denise received another unit of blood in the middle of the night. Additionally, she received another unit a while ago. This is because she is low on blood and her bone marrow is in the process of shutting down due to the chemo.

Also, we figured out what kind of production number was required in order for Denise to take a shower. Besides dragging the pump that pumps the various fluids (saline and blood so far) into the bathroom, we had to carefully cover up the Hickman catheter to keep it from getting wet. I MIGHT have pressed down on the sticky tape in the wrong place a little too hard, because an expletive immediately could be heard. Sorry honey, I did not mean to do that!

Hightlight of the day is Denise finally got a menu so she can choose her meals, such that hospital food can be called. Actually, I have eaten a lot of hers that happened to come within a four hour window that she was not allowed to eat, and it isn't bad.

She was looking forward to having steak and baked potato tonight, but after she ordered it, we found out she will have another 4 hour window that she won't be able to eat, so it looks like steak and potato for Sam tonight!

The 4 hour window is caused by the need to determine exactly how much of the chemo drug her system is absorbing. Since food affects the rate of absorbtion, they have a window of 2 hours before the chemo is given where blood samples are taken, and 2 hours after for more blood samples. I should also add the chemo is taken in pill form, and they way they alter the dosage is kind of neat. Imagine 6 little tiny pills inside a regular pill capsule. If they need to increase the dosage, they just add another tiny pill to the capsule; to reduce the dosage, they take one out. This minimizes the number pills that need to be taken and gives the doctors a lot of flexibility with changing dosages. I think each of the little pills are 2mg. I think a Moutrin is 200mg, if that comparison helps.

Finally, another factoid: Did you know that until 1957, the BBC did not broadcast anything between 6-7PM? This was to assist parents in getting their children to bed. You can read about it here: http://en.wikipedia.org/wiki/Toddlers'_Truce

Almost 5AM and we are awake; Hickman catheter is great

uneventful evening; nurses were in a lot taking blood, giving blood......Yep, another transfusion! The really good news is the Hickman catheter has been a blessing, despite the tenderness and soreness from when they installed it. Denise has been on chemo for about 12 hours now and no side effects so far.

I spent the night here at the hospital with her last night; I think we were both too tired to not sleep. Oh, I should also add we are back to being treated like royalty again. The nurses in this transplant wing know their stuff and are too happy to accomodate your wishes.

Today's factoid: In the mid 1950s, Dodge designed a car especially for women. The La Femme was pink and white with rosebud interior!

Settled in the room and comfortable--It's been another long day

Remember yesterday when I said we were treated like royalty, and not mere subjects? Well, one department didn’t get the memo that the Queen of Everything was a patient. But let’s start at the beginning…

Hello World!

We began the day as usual, up at 3AM, except I was the only one allowed to eat and drink coffee. However, She was allowed a couple of sips of water, which should have been more than enough fortification for the day ahead. Wrong! Left the house at 530AM, arrived at 645AM in time for 730AM bloodletting. As before, there were issues in trying to find the vein/artery and the Calvary were called in. No problem. Samples taken, platelets are going in, were are on time and ready for the next step. We did find out the hospital procured an extra bag of platelets to deliver to her veins during the surgical procedure to add the Hickman catheter.

The building where all of this took place is called Weinberg, named after some guy who has more money than all of you readers combined. Anyway, it is the building we have spent 99% of our time in. JH is a huge place, so when Denise was finished getting her platelets, we had to wait for a Transport (used to be called Orderlies) to WALK us over to the Blaylock building, ostensibly to provide escort protection of that extra bag of platelets. It isn’t a far walk, but if you haven’t eaten or slept well the night before, it might well feel like 500 miles.

Our escort dumps us (and the extra bag of platelets) off at the waiting room, they call us, we give them name, rank, serial number, etc, and settle back in the waiting room. Finally we are called back and are in the hands of a very nice lady who speaks English about as well as Hop Sing. We sort of thought we could be in trouble here, and the Amazing Kreskin has nothing on us now. It started when what looked like the head nurse worriedly asked “Hop Sing, do you need any help?”

Our suspicions were confirmed when she asked why were were there, what procedure were we having, and on and on. But we are lemmings trying to be nice and smile at every word. The primary direction we received was “change into that lovely Dior hospital gown, and you might want to also try our Dolce and Gabana hospital non-slip socks.” Denise complied as any good trooper would do. She took all of this far better than I did.

So we are still sitting around while Ms Hop Sing is off doing something, figuring a Transport would take us to the Operating Room in the Blaylock Building , where we were. But noooooooooooooooo, she comes back and says we now have to go all the way back to where we started (Weinburg Building), AND carry our extremely valuable bag of extra platelets across the hospital again. At least she rode by wheelchair. Here is a link to a map of the campus for those of you who wish to follow along:

 http://www.hopkinsmedicine.org/directions/campusmap.html

.As you can imagine, I wasn’t happy, and the patient is getting annoyed with the delays, since she was HUNGRY. Actually, cranky might be a better word than annoyed.

Fast forward to surgery in Weinburg and installation of the Hickman catheter. It went well, and when I was called from the waiting room back into Recovery, my girl was CHOWING down on a chicken Caesar salad and she was one HAPPY camper. Transport takes us to Denise’s permanent home for the next 30 days or so, and the accommodations are immaculate. Seriously so. If I can figure out how to post a picture of the digs I will do so.

Final factoid for you: Did you know the childrens game Candyland was invented in the 1940s as a means for kids with polio to pass the time? It's true!!

Yesterday was brutal; lots of surprises; Sam takes over the blog;

The short version: left home at 815AM, got home at 800PM.

The long version....what had been scheduled to be a simple trip to get some blood work, sign some papers, get weighed and get pre-admitted for Wednesday turned into a nightmare marathon for Denise. It started out simple enough...give them some blood, so they took 7 tubes of it. Now Denise didn't have a lot to begin with, so I am sure they just about drained her down to empty....more on this later.

Next up: go to the IPOP (In Patient Out Patient) Center to get weight and height. Sounds straightforward, and that part eventually was, BUT....SURPRISE #1-the nurse asked if Denise had ever had a specimen taken from her sinuses. This is important as they want to ensure there are no viruses lurking pre-transplant. We said no, it had not been done so the nurse said it doesn't take long and they would schedule it. They also said the procedure is a little uncomfortable, which Denise later told me was code for "hurt like a bitch". Essentially they took some tissue samples from both sides of her inner nasal passages.

So now, we think we are all done with the medical part of our trip to Charm City, and the charge nurse says the blood results from earlier this morning (see above) indicate Denise needs another 2 units of blood to be transfused, which is secret code for "you are about to spend another 6 hours in Baltimore you didn't plan for". Of course, they have to match blood type and cross check antibodies, and from previous experience we know that takes a lot of time, so they suggested go eat lunch.

So we went and had lunch--a lot of BIG people frequent that cafeteria, if you know what I mean. Lunch was uneventful since no medical procedures were involved. Then we went to Admitting to get all the papers signed for tomorrow's admission. Thankfully, this went off without a hitch and we headed back to IPOP at 315PM.

When we got there, it turned out they had found the blood needed, and in a stroke of luck, Denise's doctor said they only needed to transfuse 1 unit instead of 2. We were elated in that we realized we just saved 2 hours from not having to transfuse the 2nd unit, but still dismayed we were still in Baltimore. Oh well. 

So they take Denise away for the simple procedure of getting the IV ready in her vein, BUT...Surprise #2 arrives in the form of they can't get a vein....Not really a surprise to either of us considering how much she has been stuck in the past 3 weeks. So, they call in the cavalry in the form of a nurse who specializes in PICC lines and even has a miniature sonogram that looks at veins. Well, this expert nurse really had a hard time, and poor Denise endured 3 or 4 vein location explorations (sticks!) before all was settled, BUT...Surprise #3 arrives in that someone said they need another 3 tubes of blood for testing for whatever reason. Now readers, you will recall the first thing we did this morning was give them 7 tubes. Why didn't they go ahead and help themselves to an extra 3 tubes then? When they tried to draw the blood for the 3 tubes the specialized nurse gave up and left that task to someone else.

When the regular nurse came in and was going to try to grab those 3 tubes, I asked if maybe they could draw the 3 samples AFTER the transfusion, since Denise would have a lot more fluid in her veins and it might be easier to draw then. He agreed, and so we start the transfusion.......................

2 hours later, Denise gets unhooked form everything, and Surprise #4 arrives.The nurse asked us if we had the stuff we need to clean the germs off her arms, legs, back and chest after Denise showers before heading to the hospital Wednesday. Of course we knew nothing about any of it since it had not been mentioned at all, so we have to wait for the nurse to track all of the information and germ cleaner. Clock is ticking, but finally we are on our way.

The good news: we left so late we completely missed the Baltimore and Washington rush hours. The bad news: we didn't get home until 8PM. We DO want to say the doctors and nurses at JH are first rate, and they could not have been nicer or more professional. We were treated like royalty, and I can't imagine what Monday would have been like had we been treated like mere subjects.

We still have a lot of little things to take care of today, and then head to B'more early Wednesday, which will be a long day. Denise will first get a transfusion of platelets, because they are low and also because once that is done, she will undergo surgery to have a Hickman catheter (http://en.wikipedia.org/wiki/Hickman_line) put in her chest which will be where her medicines and blood will be taken and administered. Finally, the last major thing to happen on Wednesday is the chemotherapy will begin.

I will try to get an update out Wednesday night or Thursday morning....just don't hold me to it! And thanks to all of you for your thoughts, prayers and support. Keep 'em coming...we need them all.