Archives: September 2003
Sun Sep 28, 2003
Yes, I am still around: Day +23
I have being slacking on the writing. I have not much been in the mood. The stomach is still recouping. I have been fighting low blood pressure for the last few weeks. They keep pumping me full of fluids since I am not eating and drinking too much. However, Hopkins did give me this weekend off which was nice--although I did not go anywhere. The record low BP reading....68/30 sweeeeet. I felt pretty decent when they took it. The Dr. says this is common in transplants. I will trust her knowledge.
I stopped the growth factor. My white count went from 5700 to 2500 and leveled. Hopefully, they start creeping up on their own. I have, fortunately, been able to stop some of the antibiotics which is cool.
On the home front, Patrick has become a tyrant. "NO" is the word of the week. "MINE" is the word of the week. "I DON'T LIKE MILK, JUICE,
When I get the computer hooked back up in the basement, I will get some cool pics of the storm surge from last week. Very impressive.
Time to take some pills....Later.
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Sun Sep 21, 2003
Weathering the Storm
We are happy to report that Casa Galloway remained high and dry during the onslaught of Isabel. We lost power, but our neighbors next door allowed us to plug our refrigerators and sump pump into their generator. Basement dry, food cold. Our friend Jim came to the house on Wednesday night before the storm hit to secure items around the house. Gary's parents came on Thursday to watch the kids while we went to Hopkins and then ended up staying the night with us as well. Good thing they did, because Turkey Point Rd was partially flooded and their car would not have been able to get to our house in the morning (They were on kid-sitting duty on Friday as well) Thanks to Jim's Tahoe truck, we were able to get to Hopkins on Friday dispite the flooding. Only one house on the point suffered a lot of flooding, although many sheds took on water and a few boats were sunk. The water maxed out about 8 feet above normal tide. Rockaway Beach (where we live) is right across the water from the Baltimore Yacht Club and appearently many of their members were not able to secure the dingys on their boats properly, resulting in a flotilla of zodiac boats on our side of the beach. If you're missing a dingy, give us a call -- we have plenty down here. (Also one large oil tank. White.) Bowley's Quarters (a nearby point) did not fair nearly as well. They were hit with unbelieveable amounts of flooding, cars and boats were lost and several of the houses will probably be condemmed.
Gary's blood counts are coming back strong. His white cell count is above 1000, with most of that number being Neutrilphils -- infection fighting cells. Dr. Jones told Gary that since his numbers are recovering so quickly, it is probably a good sign that these cells are his father's. (!!) Gary has been battling stomach issues, which were determined to be esophigitis -- or a swelling of his esophogus. So it has been very hard for Gary to eat and take his pills everyday. It seems to be improving on its own, but on Monday his will be getting "scoped" to look for the source of the problem (infection, ulcer, fungus)
Gary's hair is offically back. He even needs to shave now. Gary has the most tenacious hair around and it cannot be held down by anything as wimpy as a little chemo.
It's good to be back online -- and thanks to all who called or emailed wondering if we were washed away.
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Wed Sep 17, 2003
Hurricanes and Transplants: Day +12
The kids and Gary are all taking naps, so I thought it would be a good time to update this journal. Rockaway Beach is preparing for Hurricane Isabel or more likely: solid rain showers, if predictions about Baltimore weather hold true to form. (Usually it's: a blizzard is coming! Run for your lives! Followed by: Nope. It missed us) We've tucked away any loose objects that might take on the role of "projectile" if we get any decent winds down here on the point and we're hoping to rely on the kindness of neighbors and their generators if the power goes out. (good plan, huh?) No power = no sump pump = soggy basement. Our friend Jim is coming to stay with us tonight and tomorrow in case we need some help. We're going to tie Guinness (the dog) to the end of one of the neighbor's piers to act as a directional windsock during the storm.
Gary's counts are still at rock bottom (white blood cells=12 normal is 12,000) He will probably need to get a few units of blood tomorrow and possibly another bag of platelets. So all you blood/platelet donors out there, keep up the work! It's going to good use.
So it's just a long and anxious waiting game at this point. We're waiting for Gary's blood counts to recover in order to evaluate how the transplant is working. Gary doesn't have a lot of energy right now and his stomach is very aggravated from the sheer volume of pills he takes everyday. We've been given permission to skip some of the pills for a while so his stomach has a chance to rest. Snowballs are the mainstay of his diet right now.
That's all for now -- I'm off to the basement to get the computer towers and other electronic equipment off the floor in the event of flooding. You just have to laugh when life gets this unbelieveably ridiculous. Libby was sick for 4 days, followed by Patrick breaking out into a "rash of unknown origin", coupled with the small matter of recovery from leukemia, timed with the Storm-of-The-Century. We feel like Let. Dan in Forrest Gump hanging on to the mast of the shrimp boat during the storm, shaking his fist at God saying "Is this all you got?"
Well bring it on.
Love to all---
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Sat Sep 13, 2003
Transplant: Day +8
Quick posting. Here are the Bone Marrow Transplant pictures we took. Somewhat anticlimatic but it is what it is.
Daily visits to Hopkins continue. I switch to pill form of the anti-rejection drug FK506 so my visits should be much shorter. However, I did receive 1 unit of blood today and will get another on Sunday. Hopefully, I will be home in time for the Raven's kick off. I am feeling OK relatively speaking. As long as the queeziness stays low, I can deal with most of the other stuff.
My counts still suck so I am somewhat in isolation. Libby was sick all week with a high fever. We think it finally broke today. I do not need to catch that stuff! I am taking a crazy number of pills. Basically, every hour from 8 am to 10 pm I am taking something. I will put the list up next...it is quite impressive.
Thanks for all the cards and well wishes. RDA takes the cake with the Card-In-The-Yard delivery early morning:
On a lighter note, here are two pictures I got at the Ravens training camp:
Rookies Tied to Goal Post
Rookies being beat by veteran
Take care, talk at you soon.
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Wed Sep 10, 2003
Transplant: Day +5 . . . feeling good enough
Well, yes, it is me actually typing this evening. My nausea has finally gone below a 5 on a scale of 1 to 10 hence me feeling like typing. Man, since the radiation, I have been puking my guts out. I am done all forms of chemo and now on to the new, even sexier, anti rejection drugs--cellcept and FK506. That along with the battery of anti-everything (fungal, viral, kids, etc.).
The next milestone up for me is my white count going back up. They are currently 80. 12,000 is normal. I starting with injections of growth factor (Neupogen). This is Marcy's highlight of the day--getting to jab me with a 10" needle (just kidding...it is teeney, tiny). I might put a quick graph of my counts up to show how my counts have moved over the last few weeks.
I hope to start back up on my transplant 101 document to get everyone in the know eventhough I have already had the transplant.
Surprising, I have received tons of cards from my loyal fans wishing me a happy brithday and general well wishes. Thanks to all that took the time. Marcy and I really appreciate it!
Well, back to cooking some white blood cells . . .
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Fri Sep 05, 2003
We are so blessed to have made it to this day. Here's how it went down:
Gary's dad arrived at Hopkins around 5:30am this morning to get ready for surgery. They started the marrow extraction around 8:00 and he was finished around 9:45. The procedure involves removing bone marrow from the back of his hips via a needle that is poked through the bone. A smaller needle is inserted inside of this needle about 120 times and marrow and blood are removed. They got about a gallon from Gary Sr. The blood/marrow was then taken down to a phoresis lab and bone fragments were removed along with many of the white cells, hopefully leaving mostly stem cells which will take over Gary Jr's immune system and kill the leukemia. Gary Sr was sent home on pain killers and will be in a world of hurt for the next 48hrs.
Gary and I got to the hospital around 9am this morning -- Gary has been battling nausea and we got off to a slow start this morning. They started Gary on fluids to hydrate him before the transplant -- this was to help offset Gary's reaction to his father's blood, which is of a different blood type. The marrow arrived to us from the lab around 11:45 (in an Igloo cooler, of course. Whenever you see someone carrying an Igloo cooler in a hospital, you know there must be something interesting in it.) The nurses did all the double checking that it was from the right donor and going to the right recipient (I watch over their shoulders, and I confirm that they got it correct -- no swapped at birth stories here...) They hung the bag of blood/marrow from Gary's IV pole and hooked it up to his Hickman catheter (central line) and let it drip away. Gary's friend David was with us and I think we kept waiting for Gary to leap out of bed or something. But it kept dripping, and Gary just laid there looking groggy from the Benadryl they gave him to counteract any reaction to the blood. Hmmmm. No immediate satisfaction. But we know patience and persistence will win in the long run.
After the TRANSPLANT (or Bag-of-Red-Pink-Stuff) they gave Gary more fluids and we went home at 4pm. I took pictures and as soon as I can get Gary to DO something around this place, he will download them from the camera and we will post pictures so everyone can see the spectatular event. He can have one more day of this lying around crap, then THAT'S IT.
We go back to Hopkins tomorrow for antibiotics that Gary needs because of the infection he had last week, they draw tubes of blood and we wait for the results. Then we come back home. Repeat this procedure for the next 60 days. On Monday and Tuesday Gary gets more Cytoxan (chemo drug) which is the key to the experimental protocol he is on. Apparently this follow-up hit of chemo is what is making this kind of tranplant successful so far.
What we hope will happen is that Gary Sr's stem cells will find their way to Gary Jr's bones and engraft and start producing healthy, cancer killing marrow. Gary Sr's immune system will take over and eventually Gary Jr will even convert to his father's blood type. And then he will start spackling...
More educational information later. Thanks to all who are out there thinking about us -- it is a good release to be able to type in this journal and know that people are reading it and care about what is happening to our family.
Love to all--
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Mon Sep 01, 2003
Life as a Rollercoaster
So, what's been happening, you ask? Here's the update in a large-ish nutshell:
Tuesday 8/26: Scheduled lumbar puncture (read: spinal tap) required test before transplant. The puncture went fine, but then Gary's low-grade fever he'd been battling on Monday ramped up along with the excruitiating bone pain that we can always associate with a relapse in the leukemia. Since Gary's bone marrow biopsy from 8/19 had come back clear (almost free of disease) the docs at Hopkins were not convinced in the least that his leukemia had come back that quickly. They sent Gary home looped-up on pain killers and throwing up. Thankfully once he got home the nausea subsided and the pain eased up considerably and we had a quiet night's rest. MANY thanks to our true-blue pal Jim Rafferty who drew the short straw that day and took Gary to Hopkins for the lumbar puncture. It turned into quite a hectic day for all of us.
Wednesday 8/27: We took the kids up to the Castro farm in the morning and Gary, Jim and I went back to Hopkins for follow-up blood work. Dropped Jim off at the train station to get him back to DC. The kids spent the night at my Mom's.
Thursday 8/28: 7:00am call for Dr. Smith to say that Gary's blood culture came back postivie for a bacterial infection. This was relayed as good news from the docs, as this, to them, explained Gary's fever and bone pain. We remained highly skeptical. (our family motto is : Trust No One) Gary and I went back to Hopkins to start him on antibiotics to combact the infection and also to sign the consent forms for the transplant. Gary also had his Radiation simulation performed to get the math and physics ready for his Total Body Radiation treatment this Thursday (9/4). The simulation was a snap and bascially involved a physicist and a tape measure. In the true Gary spirit, he was disappointed that none of the equipment got fired up and no actual radiation was unleased.
Friday 8/29: Hung out with our children. Ditched our children to various grandparents and went to dinner with some friends. (Pazza Luna in Locust Point. Very Yummy)
Saturay 8/30: Began chemo regimine to prepare Gary for transplant at 7:30am. One of the drugs he is getting requires that he is infused with large amounts of fluid over the course of the day. Gary was doing great until about 4:00 when his jaw and teeth began to ache and then his joints became very painful. The nurse said it was probably from the fluid (Gary gained 5 pounds that day). Unfortunately, this pain quickly lead into the bone pain and high fever that Gary has been battling on and off. They gave him a lot of pain killers, which promtly made him sick and he was admitted into the hospital for the night. I got home at midnight.
Sunday 8/31: Gary had a pain free night once he got settled in and the pain and nausea medicines did their jobs. He got the same chemo regimine that he had gotten the day before, so we were all on pins and needles to see if the late day pain would come back. It did not, but the nausea kept him awake throughout the night. He spent the night the Hopkins so he could get some help. I collected my orphaned children from my mother's and went home to bed.
Monday 9/1: Libby is 10 months old and is sprouting two teeth. Gary is continuing to battle nausea but he is home now after we spent the day at the hospital. He is currently upstairs sound asleep and I hope he wake up feeling better. The kids are asleep and the house is quiet.
We go back on Tuesday and Wednesday for more chemo and Thursday for the radiation treatment. The transplant is on Friday. We have to go back to Hopkins everyday afterward for about 60 days for drugs and blood work. We are just about to approach the starting line. The finish line is five years down the road when Gary is cancer free. Check your mailboxes at that time for the party invitation of the century.
Sorry we haven't updated everyone in a while, but things have been a whirlwind around here. Gary is putting together a "Transplant 101" document and we should get that up shortly to educate everyone on the transplant process.
Love to all and to all a good night...
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