Archives: April 2003
Mon Apr 28, 2003
Gary finished a round of chemo last Friday but has been battling chronic nausea ever since. After spending today in the GBMC out-patient infusion center getting fluids and nausea medicine, Gary decided to just check into the hospital for (hopefully) the night, in search of some relief from what he calls "psychological warfare"
I'm home and have put my tired kids to bed -- they spent the day at Grammie's (Gary's Mom) digging in the dirt (Patrick) and spitting up on the unawares (Libby). They are doing very well and are prefectly content with the crazy schedule in our house. God Bless the little ones -- they are so easily adaptable to most situations and lots of people have been pitching in to help out with them.
Hopefully next time you hear from us Gary will be feeling much better and can do some of the typing himself.
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Thu Apr 24, 2003
Chemo: Round Three
Well, we're back at GBMC for more maintenance chemo. Just a short two day stint -- Gary will be home sometime tomorrow. The drugs he is getting this time can have a very serious effect on his kidneys, so they are pumping lots of fluids through him. Crazy amounts of information coming at us, so we are trying to make some decisions about what kind of transplant will be best for Gary. Either wait for more unrelated donor typing to come back (which can take another month or two) or go ahead with the half-transplant now. We're polling the experts and aborbing as much info as we can. We have an appointment to met with U of Maryland's tranplant dude (I think that's the title he went to med school for) on Monday to throw another consultant at the problem.
We're all on the mend from the cold Gary infected us all with (not that I'm pointing fingers)
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Mon Apr 21, 2003
House of the Infirm
Cancer Schmancer! All the Galloways have colds and it's kicking our collective butts. I am confident we will all be on the mend soon and then we will have the gigantic plastic bubble installed over our house.
Gary will be going into GBMC on Wedneday for round three of Chemo. He'll be out on Friday and hopefully it will not knock him down too much (It's not supposed to affect his counts significantly)
We're still awaiting results of the genetic testing on the 4 possible donors. Hopefully we will hear something soon so we can formulate our plans for the summer.
Gary is hopelessly addicted to the TV show "24" with Kieffer Sutherland and has been renting last season's episodes from Blockbuster (the wait for them to arrive from NetFlix is just too long.) I am just about to leave on said Blockbuster run to rent more episodes of "24" and see if I can rustle up some subs for dinner. We are in need of comfort food around here.
Type at 'cha soon!
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Sat Apr 19, 2003
My cold continues
It took a plane ride to Seattle to get me my first cold in about a year. It has moved a bit into my chest. My friend David is convinced it is SARS :-).
Spoke to Dr. Cohen, he called in a prescription for some antibiotics. I will not go into the hospital on Monday. Maybe mid week when I am feeling better. Marcy is starting to feel sick. She is currently taking Libby to the Dr. Libby has been puking all week. Patrick's butt eruptions seemed to have simmered down. They should quarentine the house!
I will more than likely be staying home for Easter--resting.
Mom is over watching Patrick. He is playing in the car with them. He can, somewhat safely, climb out of he car and jeep's windows and make it to the ground. I was impressed!.
Talk to you soon,
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Fri Apr 18, 2003
Summary: The Hutch Experience
The trip was definately worth it. Aside from being the pioneer in BMTs, The Hutch is leading in cancer research and have more options available to us then Hopkins. The main thing is that the Hutch can do a BMT from an anonymous donor if they are NOT a perfect match. They still need to be close but can have a class I antigen mismatch. Given that, and the BMT report that they pulled regarding the four possibilities, one of the German donors is looking pretty good--not definate. The Hutch does not want to do a transplant from my parents unless last resort. An anonymous mismatch is better than a haploid (parental) match. The Hutch even said they view a perfect anonymous match equal to a perfect sibling match. Indicative of how well they have the Graft Versus Host Disease (GVHD) under control. The Hutch is a big proponent of Graft Versus Leukemic effect. This is where the donor t cells attack my leukemic cells (part of GVHD). The Hutch does not do T-cell depletion (reduce the number of t-cells in the marrow harvest before given them to me) where Hopkins does. This is an area of investigation for me.
The facilities out there were amazing. The people were nice and knowledgable. We toured the Univ. of Washington hospital. The Cancer Alliance has two floors where BMT patients stay. The Hutch does over 400 BMTs per year and actually pioneered the procedures. One of the founding doctors (Dr. Hanson) was doing rounds when we were there. Also, Dr. Hickman, of Hickman Catheter fame (tube I have in my chest), works there and puts all the Hickman's in. Pretty cool. The main Dr. there received the Nobel Prize for his clinical work in BMTs.
So, the main decision point is when the results of the anonymous typing comes back. If we have a perfect match then I am leaning to Hopkins given the proximity and degree of risk. If it is anything else, I am heading to Seattle. Average stay for a BMT in Seattle is 4 months. 1 month in the hospital, the rest daily out patient visits. Have not planned out the logistics yet. We will cross that bridge when we get some intel.
In the meantime, I am going to tour Hopkins BMT floors and since Univeristy is so close, check out their BMT program.
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Thu Apr 17, 2003
What can you do to help?
The most frequent question Gary and I are getting from friends and family through this whole journey is "What can I do to help?" You all are great and supportive and it's a perplexing questions to answer. But I did some research today and hopefully some of you out there can and will take action!
Here's the scoop on the Bone Marrow Registry: As you may know Gary returned 4 possible matches from a database that contains over 4.5 millions registrants (If you do the math, Gary's one-in-a-million, but I digress...) We've been told that those of us that are Caucasian European decendants will need to pay to have their blood added to the registry at a rate of $65 a pop. The registry feels it has a great representation of the genetic makeup of the "White" community, and they are spending most of their funding on registering more of the minority population. SO if you are African-American, Asian-Pacific, or Hispanic or know someone who is, we encourage you to register so that maybe you can help out someone like Gary somewhere in the world.
Blood/Platelet Donation: I think our collective resources would be better spent in this area. Gary has received over 8 units of blood and 5+ infusions of platelets during his treatment and I'm sure we're not finished. It would be helpful for folks to donate blood (I know friends at RDA already held a blood drive) and for those who wish to be superheroes, Platelet donation is the assignment for you. Platelet donation is a process which blood is drawn from one arm, circulated through some machinery to spin out the platelets and then the remainder of the blood in put right back into you via a vein in the opposite arm. The process takes about 1.5 to 2 hours. Very few people are platelet donors probably because of the time committment but these platelets have already saved Gary's life and many others that need them. I practice what I preach, so I have an appointment on Saturday to donate. I'll let you know how it goes.
Bone Marrow Registry: Susan Crabbin at Johns Hopkins (410) 955-8951
American Red Cross -- White Marsh location -- (410) 933-0689 or call the Red Cross for a location if you are not in the Baltimore area.
Feel free to email us if you have any questions. Thanks!
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Tue Apr 15, 2003
Hopkins confirms my parents are my parents
Through complex and cuting edge genetic testing and screening, Hopkins told me that my parents typing indicates that they are BOTH Haploid matches--read, half matches and my biological parents. Whewww! I have always wondered. I could have saved them a few thousand dollars.
No news on my two domestic friends or my two Kraut brothers.
Getting ready for the Hutch meeting.
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Mariners Win and the Sun was out!
What a great day. Perfect weather. We took a cool tour of the Seattle Underground. The Underground was formed when Seattle got started as a city back in the late 1800's and burnt down. Basically they built up the city 1 floor (10 feet or so) because of flooding and sewage problems (why not redo things better after the fire). The new problem was that the store owners would not wait for the city to raise the topography so the built their new stores out of brick. The city still raised the streets 10 feet. To keep the stores intact, the built 10 foot walls where the curbs would be. The result was a underground sidewalk in front of the original 1st floor of the stores. The story is quite elaborate and interesting. Very cool tour. Here is the link
We took a ferry out to Bainbridge Island. 30 minute ride. Amazing views from the ferry. Snow capped mountains in the distance. I will get some pictures up when I get back. The town itself was OK. Man would I love some of the waterfront houses though!
Got tickets to the Mariners game from the Seattle Cancer Alliance. Great seats. Very cool stadium--retractable roof. The Mariners won.
Quesiton of the day. "What brings you to Seattle?" I responed "Cancer
Had a message from Hopkins. It was too late to call them back. Not sure if we have any of the results back from my 4 possible matches. Fingers crossed.
Went to a barber shop and got my head shaved today. Pretty neat being a baldy. The barber said I look much tougher now
We meet the Dr. at 11:15 AM. Hopefully I would have spoken to Hopkins by then so we have more of the cards on the table.
I will post any info I get tomorrow. See Ya.
PS, I will let Marcy proof this on Tuesday at some point
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Sun Apr 13, 2003
In Seattle, safe and sound
Had access to a computer. Working on Mariner tickets... See ya
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Wed Apr 09, 2003
We just finalized plans today to visit the Fred Hutchinson Care Center in Seattle, Washington for a second opinion/approach to Gary's necessary bone marrow transplant. Apparently "The Hutch" is "The Place" (We haven't yet located "The Starsky", but we are sure it must exist somewhere, but what they might do there is a mystery)We fly out on Sunday morning and have an appointment to meet with a physician on Tuesday and then we return to Baltimore on Wednesday. Hopefully what we need is right down the street at Hopkins, but if not, we may be spending the spring and summer in Seattle. Whatever it takes...
Gary is feeling fairly well this week -- just a persistent upset stomach and general sleepiness.
Tonight we are meeting Nan and Peter out in Federal Hill to take a tour of their new bar! It's to be called The Royal and we will be shamelessly plugging it once it opens (hopefully soon!) then we're grabbing a bite for dinner. Site to be determined by Nan.
Kids are well -- Libby is currently draining a bottle on my lap while I am typing with one hand. Patrick is watching "The Street" (Sesame Street to you non-kid types)
We'll type at you soon!
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Sat Apr 05, 2003
All quiet for once...
I got my Procrit shot. Aside from an afternoon headache, all is well. No complaints and I have decent energy. Today, we are planning oin driving to DC with Karen and John to check out the Blossoms. The weather is currently not cooperating but it is suppose to warm up. Tonight, dinner at Buca di Beppo (http://www.bucadibeppo.com) in Dupont Circle. Very cool place.
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Thu Apr 03, 2003
A walk in the park
No really, Marcy, the kids, Karen, Kevin and I took took a walk in Rocky Point State Park today. It was quite nice out. A little windy on the water. Mostly my marching orders were to keep the 2 kids from killing themselves on the jungle gym. Within 5 seconds of Patrick getting on, he tumbled backwards, down two steps and into the mulch. Although Patrick was perfectly fine, I was fired from my post
Patrick approached a girl with a ball. Maybe she was 4. She immediately screamed, "THE BALL IS MINE!", and ran off. In that short lesson, Patrick now says, "MINE, MINE". We have failed as parents
We all grabbed some lunch at a local place. Lunch was a chore becasue the kids were fired up and we were invading the secret elderly world of the Senior Discount Lunch. Couple that with screaming kids and we were quickly not the popular table. Hey, screw 'em. They want to complain, have them sit with me for a few minutes to listen to my "perspective talk"
Head back to GBMC Friday for a shot of Procrit to keep the RBCs juiced up.
(I am looking into a spell check add on for the site. Marcy is not too happy with my proof reading. Since I do not proof reaad
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Wed Apr 02, 2003
Free at last
I am going home. 98.2 and holding. Running in 1 more bag of IV antibiotics. Should be out around 1.
Excellent. My white counts skyrocketed up to normal. So I am not compromised. Waiting for the platelets and RBCs to move up. Dr. said no juggling knives (damn!) or jogging (no worries there
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