Final dose....

...of chemo today. Starts at 10AM, finished with it about an hour later. Needed an infusion of Potassium overnight, but otherwise no issues and slept much better than the previous night.

Denise is officially neutropenic, which means she has no white blood cells at the moment. She will most likely "hit the wall" late next week for a brief period of time, and then we will be watching for her blood counts to slowly start increasing.

Factoid: Only one McDonald’s in the world has turquoise arches. Government officials in Sedona, Arizona, thought the yellow would look bad with the natural red rock of the city.

She could not do it!

She tried. "After much discussion this morning before work, my roommates will claim that I cannot in fact lick my elbow but rather my forearm, roughly two inches from my elbow. My co-workers claimed the same this morning. But if it's any consolation, I am closer than any of those that tried...which they all did. Including my boss."

75%

Another uneventful evening. I went back to Washington to wash some clothes, then went to Target to purchase some "high end, designer" lounge wear for Missy D. Of course, being color blind ensured nothing matched, which is why I made to sure to get at least a couple of items in black and white. (Pretty sure most anything can go with either black or white).

The coffee situation had become critical, as the nurses, rightly so, don't always have time to make coffee for HRH. So, I also procured a baby Keurig coffee maker for the room, along with a supply of our favorite Newman's Own Extra Bold K-Cups. The queen is happy. Sometimes you have to spend money to save money.

Back on chemo for the next 2 days, and then finally through with that. Both happy about that.

Finally, remember the factoid yesterday about the inability to lick your elbow?

Factoid: At least 75% will try it upon reading it.

Factoid: I have an unverified claim the feat was accomplished by our niece. Lindsay, please send a photo!

Frequent Shopper

As you can see by the photo on the right our Queen is out and about on the hospital grounds. Warning to all others on the property: She pretty much knows her way around the hospital now, although she had some difficulty finding her way out of the compound she lives in. Not saying her mind is muddled. It can be confusing. I even got lost trying to find my way INTO the compound in the early days of admission.

Factoid: You cannot lick your elbow.

Giant Factoid

From Wikipedia:

Something The Lord Made is a film about the black cardiac pioneer Vivien Thomas and his complex and volatile partnership with white surgeon Alfred Blalock, the world famous "Blue Baby doctor" who pioneered modern heart surgery. Based on the National Magazine Award-winning Washingtonian magazine article "Like Something the Lord Made" by Katie McCabe, the film was directed by Joseph Sargent and written by Peter Silverman and Robert Caswell.

Something the Lord Made tells the story of the 34-year partnership that begins in Depression Era Nashville in 1930 when Blalock (Alan Rickman) hires Thomas (Mos Def) as an assistant in his Vanderbilt University lab, expecting him to perform janitorial work. But Thomas' remarkable manual dexterity and intellectual acumen confound Blalock's expectations, and Thomas rapidly becomes indispensable as a research partner to Blalock in his forays into heart surgery.

The film traces the two men's work when they move in 1941 from Vanderbilt to Johns Hopkins, an institution where the only black employees are janitors and where Thomas must enter by the back door. Together, they attack the heart problem of Tetralogy of Fallot, also known as Blue Baby Syndrome, and in so doing they open the field of heart surgery. The film dramatizes their fight to save dying Blue Babies. Blalock praises Thomas' surgical skill as being "like something the Lord made" and insists that Thomas coach him through the first Blue Baby surgery over the protests of Hopkins administrators. Yet outside the lab, they are separated by the prevailing racism of the time. Thomas attends Blalock's parties as a bartender, moonlighting for extra income, and when Blalock is honored for the Blue Baby work at the segregated Belvedere Hotel, Thomas is not among the invited guests. Instead, he watches from behind a potted palm at the rear of the ballroom.

After Blalock's death, Thomas continued his work at Johns Hopkins training surgeons. At the end of the film, in a formal ceremony, Hopkins recognized Thomas' work and awarded him an honorary doctorate. A portrait of Thomas was placed on the walls of Johns Hopkins next to Blalock's portrait, which had been hung there years earlier.

Regular factoid: Patient had 2 transfusions of platelets last night, and feels pretty good this morning. Will probably have another blood transfusion in the next day or so

Forgot the factoid

The longest word in the English language, according to the Oxford English Dictionary, is pneumonoultramicroscopicsilicovolcanoconiosis. The only other word with the same amount of letters is pneumonoultramicroscopicsilicovolcanoconioses, its plural.

Glad there aren't any jewelry stores

Finally took the Queen of Everything for a stroll through the main hospital and get her off the transplant ward. So much easier walking down long corridors than doing laps and dodging doctors, nurses, and other patients.

Of course we had to go shopping. Ended up with a National Enquirer and some Twizzlers. Could have been a lot more expensive if we were in St Michaels!

Denise really enjoyed the stroll and wants to do it at least twice a day now. We are back in the room anxiously awaiting her tray of "airplane food".

Awake and ready for a day of rest

As you can imagine, yesterday was a long day, filled with surprises, anticipation and suspense. Nonetheless, the evening brought an uneventful night of sleep and the patient feels pretty good.

We don't expect much to happen today except drawing of blood samples, which will happen every single day for the next 4 weeks or so. In addition to monitoring her blood counts, they will also be looking at liver, kidney and lung function.

Friday the chemo starts anew with a dose Friday morning, and another on Saturday morning. Then we are finished with all chemo!

So, if any new development arises, I will be sure to let you know.

Factoid: Elephants are the only mammals that cannot jump.

DONE!!!

Transplant is completed. No chills. All seems well at the moment. Hydration (more baking soda and salt) is next for the next 3 hours.

Watch it flow

Red Liquor of Life

is flowing into her body and swimming to her bone marrow...398 mL, which is almost 3 more times the amount they needed. Let the record show it started at 7PM

This bag is priceless!

Waiting for the doctor's final green light. Everyone else has signed off. Expect it momentarily and then the nurse will hook up the marrow to the Hickman; Denise gets a second chance; and a second birthday!!!

Just arrived

Inside the nothing special cooler is the marrow. Just sitting on the table. No nurse in sight. Denise is a nervous little bunny, but she is ready.

May have to get an injection of Sodium Bicarbonate since her alkalinity needs to be at 7.5 and I don't think we can get there with the IV drip since the marrow arrived early.

And it is still sitting on the tray table....waiting for a new home.

Factoid: Hershey’s produces over 80 million chocolate Kisses--every day.

Baking Soda and Salt

The big 1 Liter bag on the left is Sodium Bicarbonate mixed with Dextrose. The small bag on the right is Sodium Chloride (saline), commonly referred to as salt. Notice how they both have tubes that go into the square box, which is a pump that regulates how fast the fluids are pumped into the patient.

In a while, I will publish a photo of the marrow. The marrow is not pumped into the patient; it is gravity fed directly into the Hickman catheter (which Denise loves, by the way). The reason it is done that way for bone marrow is because the pump can damage the stem cells with the pumping action.

Factoid: The Q in Q-tips stands for quality. They were originally called Baby Gays.

The plane wasn't hijacked!

Which means, and we have confirmation, the donor's marrow is safely here at JH. Apparently, when marrow travels, it is not in checked baggage. It files with a human that escorts it all the way to the transplant center. Might be a good retirement job!

Denise is getting loaded up on the liquid baking soda, so stay tuned.

Factoid: A female opossum has 13 nipples

Publish Post

A Shout Out to my sister...

...who just signed up to be a bone marrow donor. Thank you Ann.

Now they tell us....

Just had a long conversation with the nurse, and got a few more details about the schedule for the day. Firstly, Denise is getting TWO bags of blood today, not one, so that will be a 4 hour process--so much for taking a long walk throughout the hospital today.

The second tidbit of information we received (our personal factoid from the hospital?) is the fact that the donor's blood type is A. Since Denise's has pig blood like myself, O positive, there is a complication we had not heard of before due to mismatched blood types. Apparently the kidneys would normally attack the donor's mismatched blood stem cells during transplant, but these people here are so smart, they have figured out how to trick the human body.

What they will do is around 4PM start pumping the patient full of Sodium Bicarbonate or as you cooks know it, baking soda. Now this will not be snorted, but will be delivered through the old reliable Hickman catheter (did I mention Denise loves her Hickman?) in liquid form. The purpose of this is to increase the alkalinity of her blood, such that the kidneys will pretty much ignore most the Type A blood invasion. So 3 hours of baking soda IV, then the transplant, followed by another 3 hours of liquid baking soda.

Some preparation of the donor's marrow will also be occurring during the initial baking soda IV. The lab will "wash" the marrow, which means they will eliminate as many of the red blood cells as possible. Remember, we don't care about the reds, whites or platelets; what we want are the stem cells.

Because all the reds cannot be totally filtered, and because mismatched blood types are involved, Denise will get the chills during the transplant, probably severely. Glad we know about it now, so Denise won't be wearing those beautiful summer pajamas tonight that Cheryl brought her yesterday.

Finally, this is Day Zero-Transplant Day-Denise's "second" birthday. As such, her immune system is considered destroyed, and will require 3 drugs daily to protect against viruses, bacteria and fungus. Note these are not treating anything, they are preventative and are issued in 1/2 doses. Once her blood counts start coming back up, the need for these will cease.

Now, let me also add the fact we are still so strongly confident in this team of people here. We can tell just by the way they speak to us they care, they believe in the process, and they spend whatever amount of time they need with us to answer any questions or explain any process. Seems to me they could easily give us a 30 second explanation about something and move on, but has never once happened. We both firmly believe we are in the right place with the right team at the right time.

I know this was a lot of info, but writing down helps us keep it straight, and all of you informed. Will post later this afternoon as we get near the big event.

==============

Useless factoid: Horses can't vomit!

Useful factoid: Go to http://marrow.org for information about being a bone marrow donor

A few Pictures of the Hospital

To the immediate right is the glass dome that sits above the original Hospital building, commonly referred to as the Billings Building, named after the surgeon who designed it.

Underneath the dome is the statue of Jesus.

Picture immediately below is an Analemmatic sundial which is just outside the entrance.

Bottom pictures are exterior shots of the Queen Anne style Billings Building.

A Quart Low

Good morning everyone! Another relatively peaceful night for the patient. Looks like we are a bit low on blood this morning (actually hematocrit). Didn't really come as a big surprise since Denise's bone marrow has already been completely destroyed and is not up to making any reds, whites and platelets. So, we will be receiving a blood transfusion this moning as a prelude to the big event later today.

Actually, the transplant is scheduled to take place around 7PM this evening, as they do not expect the donor's marrow to get to the hospital until around 5PM. Why so late? We can only speculate. Perhaps it is from a wealthy European donor who is royalty? Perhaps it is from someone on the East coast and they thought they would donate on their lunch hour? Or maybe someone here in the Charm City who is coming into Johns Hopkins near the end of their work day?

No matter. We will have the opportunity to find out a year from now if the donor is willing to exchange information. If they are, you can bet Denise and I will treat them like royalty if we ever have a chance to meet.

I'll post another update once we get moving on the transplant. Thanks again for all your support and emails.

Factoid: Reno, Nevada is further west than Los Angeles, California!

Double bonus factoid: El Pueblo de la Reina de Los Angeles (The Town of the Queen of the Angels.) is the original name of LA

Another restful night; finished with chemo until Friday

Well, we are still on schedule to celebrate Denise's "second" birthday tomorrow. She feels good and is eating and sleeping well. Found out yesterday the transplant is a little more than a tranfusion of a unit of blood, as we had originally thought. It is more like a transfusion of four units of blood, which means it will probably take around 4 hours to get it all in.

As of now, we expect this to start around noon or so, but that is a guess since we don't know where the donor's marrow is actually coming from.

Still no side effects from chemo to this point, but they may kick later in the week/weekend. Hopefully the drugs they give to alleviate will do their thing and any side effects will be minimal.

Some of you may ask why is Denise getting chemo AFTER the transplant. The reason is because it decreases the chances or minimizes the severity of Graft Versus Host Disease (GVHD). GVHD is when the donors Donor's white blood cells think Denise's cells are foreign and start attacking her own cells. You can read all about it here:

http://en.wikipedia.org/wiki/Graft-versus-host_disease

but rest assured these people at Johns Hopkins know what they are doing and we have all the confidence in the world in them. If you ever have to be in the hospital, this is the place to be.

Factoid: Johns Hopkins was a Baltimore banker, merchant and B&O Railroad magnate who left an estate of 7 million dollars when he died in 1873. In his will, he asked that his fortune be used to found 2 institutions that would carry his name: The Johns Hopkins Hospital and The Johns Hopkins University. At the time, it was the largest philanthropic request in the history of the United States.

Blue Airplane

Good morning all; Denise slept great last night; I did too, but I was in the hotel.

Wanted to send along a picture of the airplane that is sewn into her as part of the Hickman catheter.

Starting the new chemo momentarily; extreme hydration has already started as they want to

keep the kidneys and bladder very active during this phase. All is good at the moment, and here is your factoid:

Dr Seuss was challenged by his editor to write a book using no more than 50 different words. The result? Green Eggs and Ham.