Tuesday at about 4pm

I talked to Trish a little while ago. She still sounded awful and insisted on getting up and giving me her counts - I tried to tell her to just relax - , I have now posted them and they are indeed looking up. This is turning out to be indeed her "bad week". Trish and Andy could have coordinated their situations a little better, but que sera, sera.

Next to the white bread stuff - today's post about the multitude of reported Leukemia deaths in recent months has hit a cord with a lot of folks. The good news is, I'm not just over sensitive to it...but I guess anyone reading this blog is over sensitive to it.

Oh well. Tomorrow's a new day. Hopefully Trish will start to turn for the better and I have to take Andy for his post surgery followup and stitches removal. I won't be able to watch. I have watched child birth. I have watched them do bloody bone marrow biopsies on Trish....but I can't handle stiches being pulled out -- I'm just weird that way.

Tuesday at about two pm

I just tried to talk to Trish again and get her counts from her. I didn't get them, she sounds pretty awful. Best to just let her sleep. They have upped her attivan dose to 1mg again. They had lowered it to .5 to let her nausea be controlled without knocking her out, but she needs the stronger dose now.

Her white counts jumped again, she remember them this morning and told me (but now I forget wha she said they were)....So the good is balanced with bad and I'd rather be working from her room today than making one-handed Andy lunch....but I guess I need to be a father too every once in a while.

When I get the counts, I'll post them in the meantime, I will leave Trish alone. She said she'd call me back when she felt better.

Tuesday

Yesterday was probably Trish's worse day since the transplant (so far). She sounded awful when I spoke to her in the morning and she didn't sound much better throughout the day. But again the good news is her counts appear to be coming back nicely.



Has anyone else noticed that Leukemia has a press agent? Maybe I am just sensitive to it more than most folks....but a lot of well known people have died of Leukemia in the last year. I always want to know more -- it's just not Leukemia to me....was it CLL, CML, ALL, AML -- what type of AML? Trish is M5. The latest is Bill Walsh football coach extraordinaire ( SF 49ers), before him (just a day or two) Tom Snyder (TV host), Bill Bradley (60 minutes) and a whole slew of others, I thankfully forgot. It just seems weird to me.



Here's another thing I noticed recently (I'm starting to sound like Andy Rooney now).... I am so used to the special care and attention given to Trish at Hopkins that I almost attacked the nurse at Doctors Hospital that took care of Andy last week. Before any IV is aached to Trish's central line or I flush it when she is out of the hospital, it is cleaned with alchohol for at least 30 seconds. With Andy, they were just unscrewing it and screwing in the new bag of stuff -- not a whole lot of attention to cleaning or possible infection.....and ou know that was probabl ok to someone who has a normal immune system. You'll be happy to know I controlled myself and just watched carefully. Another weird thing... I thought hospitals stopped giving pitchers of water to patients....Andy got a pitcher of water in his room. Again, just a way to avoid infection at Hopkins. Trish is only brought a single cup of water, that's thrown out every few hours and replaced and it is drawn from a water purifier in the pantry -- it never sits long. I haven't talked to Trish yet this morning, but will post an update when I do.

Good News, Bad News

Everything has it's two sides and today is no different. Before going to bed last night, I called Trish and she officially had her first fever. She's notorious for not getting fevers when the nurses expect her to...but now she has complied with the norm and gotten a fever. She's still a little warm this morning, but feels like crap. She said she expects to stay in bed today, no walks, no nothing.

They took her for a CT scan of her head and chest this morning and they have unclogged her one Hickman lumen that was stuck last night. Even better news for visitors, she has been cleared of VRE and we no longer need to wear gowns and gloves to visit and better yet she doesn't have to wear them to walk around either.

I'd like to think days like today are the days she misses me the most. On days like today she sleeps and I work (usually from 9-9, as she sleeps). I feel bad, because I wonder if she even knows I am there. I do little things for her throughout the day and I think they do matter. I wish I was there today.

Today, I will take Andy to therapy and he'll have therapy on Friday again. Wednesday his stitches will come out and we'll visit the doctor. He is starting to feel better. He thinks he might be able to stop the pain meds in a day or two (we'll see how he feels after therapy).

The good news on Trish is that her counts continue to climb. The nurses say that you tend to feel like crap as your immune system comes back and we have seen that before after rounds of chemo in the past. Trish's white cells have reached 460 and drum roll please.......Her neutrophils have showed up (very early) and are at 130. They gave her platlets yeserday and as a result her platlet count is high (for her) at 119. Her red cell count is lower than normal but high for her at 27.4 -- You can follow the trend at "The Counts" link on the left column.

Stay tuned.

Sunday morning and the counts are zooming

That fireman of ours most have some super marrow.....Trish's white count has JUMPED up to 230 today....Andy better get better fast, I may have to run back to Baltimore pretty quick. Or maybe it is all the love she felt from the dinner dance last night....either way she is doing well. Of course she is still quite nauseous and receiving lots of Ativan, but hey did you hear?! Her white counts are at 230!!!

Andy made it through most of the dinner dance last night and woke up early this morning long enough to take some pain killers and go back to bed. I'm going to spend some time working on the house today and probably work from home most of the week to be with Andy.

One more time -- Thank you to everyone for all your support.

-- Trish just called me back and said the doctors figure that she will be discharged in about a week. Which means IPOP -- stands for inpatient-outpatient and we go back and forth each day....

I hope to have some pictures from last night posted here soon, if you have pictures you wantto submit, please send them to me at chip@dicomo.net, thanks.

Dinner - Dance

Wow and Thank you.

Saturday Morning Post

No, no morning version of Norman Rockwell being posted here...Just spoke with Trish and she is doing ok. Some aches and pains to report -- she and Andy will both be getting some oxycodone today. The good news is that her counts have started coming up -- though we will expect them to bounce up and down over the next week. Her white counts hit 70 today and as a result I have started tracking the counts post transplant. If you have no clue what I am talking about -- look for the Links box in the left column and click on "The Counts". Once Trish's counts reach 500-1000 and she has Neutrophils she will be discharged. Katie, her nurse today, is guessing that may be as short as a week away -- maybe two.

Andy is doing well, crabby, but well. His surgery wounds stopped oozing, so I was able to put a smaller bandage on this morning, I need to run out and get a bigger Tagaderm though...two of the wounds are too close for two small bandages and one big one would work better (I think, hope)...

Tonight's the big dance. Not sure yet if we'll make it depends on how Andy is doing. I'd like to thank everyone who helped put it together or is working to make it a success. You know this whole part of this thing is the worse. We're just not used to being in need and its not a good place to be. We are very greatful to everyone who has come to our aid and hoping that in a years time our lives will be back to normal, we'll be visiting an incredibly nice fireman and we can all relax a little.

One more note on the silent auction items, we did not get a great online response to the bidding. Many of the sports items have a minimum bid and that's not us being greedy, the teams set a minimum value/bid that can be accepted on the donated items -- we are obligated to follow their rules and we must report back certifying how and how much the item was auctioned for. If any of the items fail to meet the minimum bidding required at the dance tonight, we may put them back on-line and maybe with some promo from Lebby they will go. New items kept pouring in this week and there were many that didn't even get posted to the web site.

Andy and I just got home -- a little before 11am...I showered and am about to run out for his meds now while he rests. Lucky Matt is still asleep in his own bed.

Everything appears well with Andy, we stayed because of nausea. A new DiComo Family trade mark.

Spoke with Trish this morning and she sounds well. Her nurse came in excited about 4am to tell her her white cells have hit 50 -- that's when they start counting them. So her transplant must be doing well cause you have to have marrow to produce cells. I asked her to chat with the docs about that, but she may not. So we may not get any more info than that. Guess I'll have to start a new chart on the counts page so we can all follow along.

Andy ended up getting admitted. He kept throwing up when he got up (takes after his Mom), so they will keep in over night and hopefully let us go home tomorrow jus after rush hour (I hope).....

Trish sounded great tonight when I called to let her know, but I'm sure she will have her "usual" bout with nausea around Noon tomorrow -- thanks to everyone who is sending her cards and emails and calls....I'll likely stay home for at least a week with Andy if Trish is stable before I head back to her....

Trish & Andy Update

It's about 7 pm and Andy and I are in the post recovery room. He has nausea just like Mom. The Physical thearpist just showed us his exercises and in a few minutes they will try to get him out of bed and walking. He's still a little groggy -- the nurse keeps saying they gave him a lot of morphine. I know rish and morphine don' get along so well and it looks like Andy isn't a big fan either.

I spoke with Trish a little while ago and she had gotten over her afternoon nausea and is feeling very fatigued -- which is expected. She will relax tonight and may watch a movie.

When we get discharged here, I'll pick up Andy's meds and return the rental car I got last night and than I think I'll get some sleep (maybe).

A busy Thursday

Andy was wheeled into the OR just before 2pm. He was nervous but fine. I am waiting to hear that the surgery is over, it will likely take from one to three hours and than recovery time. Andy's more concerned about the rehab time and how quickly he can get back to playing LAX and driving.

I of course gave Trish updates all morning and got updates on her as I did. She is having her predictable nausea at Noon and a nap almost immediately after when they give her vitamin A (ativan).

The nurses here asked me what hospital I worked at, because I knew a lot about what was going on and asked about the anti nausea meds Andy got by name....I wish I worked at a hospital. It would beat the last couple of years I have spent in hospitals. Like Andy who is worried about being normal again even before he starts, I am sooo ready to be normal again.

Just a reminder that you might want to check out the silent auction items or let the sports fan or someone you know who might be interested in the items that there is still time left to bid on them. Our online bidding prior t the dinner/dance will end at Midnight tomorrow. If any items are not taken, we may post some additional online bidding. Donation agreements prevent us from posting the items on eBay. So this is the opportunity to acquire them.

Wednesday quick update before airport

I am headed to the airport in about 10 minutes, my flight is delayed by 15 minutes, we heard today that Andy's surgery is abot 2pm tomorrow and we'll have to be at the hospital by 11am. Trish is doing pretty well the doctors say she is a text book case so far have how it should go....They told her the rash on her back was not worthy of a good fellow teaching session. She was a little nauseated today and said that it is almost like clockwork everyday at noon. Hopefully she stays well while I am home. Thanks to everyone who has started sending her cards.

FYI we have added more items to the silent auction and now you can see other bids placed on each item so you know what a winning bid would have to be. Take a look there's some cool stuff there that I know my boys would like.

Tuesday

The next 24-48 hours is liable to be a blur. I fly home tomorrow night to be there for Andy's surgery and Trish will be on her own. Aunt Mary and John promise to visit her on the weekend. Please take a minute to send her a card or an email over the next week. The biggest thing we will be fighting is boredom (I hope)....Trish did develop a rash on her back last night and this could be the start of GvH but it usually doesn't start there. No word from the doctors yet on what this might be or or not be. I'm jus hoping she can stay GvH free till I get back up here.

Monday Night and lots going on

The good news is that not much is going on with Trish, but the bad news is that I will be flying home on Wednesday night. Andy has to have surgery on his shoulder Thursday. He has a SLAP lesion and if he really wants to play lacrosse in his senior season as he is a captain this year -- he'll need the surgery asap. He should rehab in time to play, but he'll have at least 4 weeks of pain and lack of use of his right arm before he can start the rehab process. I expect I'll be home for at least a week unless Trish needs me sooner. When I wrote to work to let them know I would be taking Thursday and Friday off, my subject was: " it sucks to be me".

Well the good news is that Trish is stable and mostly bored at the moment, and she has at least two more weeks as an inpatient, so it is a good time for this to happen. As I have said many times, it could be worse. I am just hopeful that it doesn't get any worse any time soon.

Trish's nausea has passed tonight. Her skin looks a little darker and the chemo sunburn on her neck and back are still bright, burned looking and peeling. She says her throat is feeling better though and that is a good thing.

I could use your help entertaining her over the next week or so. If you have a chance give her a call (suggest 10a-10p), send her a card, send her an email. Let her know you are thinking about her over the next week or so. It could be a rough week if she develops GvH especially while I am gone.

Monday Morning status

I spoke to Trish this morning while I drove down to the office in Glen Burnie. She sounded good, though she's the type who would sound good under any circumstance. She said her throat is feeling better and the docs want to move her back to pills -- the last few days they moved all her meds to IV to help preserve her throat.



She is feeling more queasy today than yesterday. I spoke with her again at about 1pm and she was sounding groggy, some more "vitamin A" to help with the nausea. She is hating the "vitamin "A" (ativan) as it is helping bring on more chemo brain than she has had to date. She's forgetting stuff and when we walked yesterday to the famous JHH Jesus statue, she started to go the wrong way off the elevators. She doesn't usually make that mistake.

In the I didn't need to see/read that department.....You may remember that the first night Trish was in the hospital, I was alone in a hotel in downtown Baltimore watching TV. I had on CNN and a story came on about Oregon's right to die law, where people can request assisted suicide under certain conditions. The guy who was the feature of that story that night had what Trish has (AML Leukemia) -- I didn't need to hear that on the first night in the hospital......Today, I am reading the newspaper with breakfast and there is an obituary on a lady her died from breast cancer. She had complications following a bone marrow transplant (I didn't know that was a treatment for breast cancer, though it was only used for blood cancers). This lady had two daughters, one had just graduated from high shool and the other will start her senior year in the upcoming school year. It too hit home. Trish biggest fear is that she won't get to see our two boys complete their journey. This disease has already cost her seeing Matt's middle school basketball season, both boys Lacrosse seasons and it will cost her at least the start of Andy's senior year. We are hopeful that she will not only get to see Andy graduate at the end of the upcoming school year, but she will get to see Matt graduate as well.

Thank you for your continued support.

Sunday Update -

The doctors told Trish in rounds this morning, she is the poster child for the way a MUD transplant should go...she's looking good and getting all the right bad effects at the right time.

Last night the chemo "sunburn" on her back started to peel and the skin broke -- Vanessa her nurse bu some anti-bacteria cream on her to insure she doesn't get infected. Her nausea comes and goes, right now it is good and she is eating a pudding I brought in from the store. She asked for pudding, because it would be soft and cool. Her biggest issue right now is the mucuscitis. She says it is getting better, but it still hurts to swallow.

Starting Monday the graft versus host team will start following her. Apparently they have a bone marrow transplant team and a special team just for graft versus host disease. There's still a lot that could go wrong, but at the moment things are really looking good.

For those who have been reading along with us since February or earlier, here's an update on the construction at Johns Hopkins. Just a refresher...when we arrived in October 2005 -- there was a parking lot on the land. Before Trish left in February 2006, the parking lot was being demolished. When we came back in February of this year the construction had started, but was mostly an exercise in dirt moving. Now the walls are starting to get in pplace on the two new towers being built.

February 2007

July 21, 2007

Saturday Morning (Tried Friday night) Update

I typed a really nice update last night -- about 30 minutes of tyoing and normally the software I use will auto save what I type....but last night the internet disconnected and everything I typed was lost. Too bad, it was a pretty informative update. Well here's today's update......

Last night Trish started the downward slide that her doctors promised would happen. She is getting pretty severe mucuscitis (throat and nasal passages peeling and becoming raw and painful), she's also pretty fatigued, this should be the full fledged beginning of her rough days. I stayed with her past midnight last night and left Aunt Mary's as soon as I woke up this morning to be with her.

While I was worried, when I arrived at her room, she was sitting in her chair listening to an audio book. She told me she had done some laps this morning as well. Of course about ten minutes in my visit, she was vomitting again and the nurse is about to bring her some "Vitamin A" -- ativan -- known to put Trish to sleep.

I found a medical article that Dr. Griffiths wrote, I put a link to it on the Leukemia Resources page with the other Doctors' links and the article has a picture of our favorite Hopkins Fellow, so if you are interested you can check that out.

Next Saturday is the Dinner Dance to help raise funds for Trish's care. There will be a silent auction of some really cool things Dolphins and Marlins stuff, Time Share weeks and more. I hope to have an on-line version of the auction up early next week so that folks who may want to bid, but can't attend the dinner can do so -- so check for it on Monday or Tuesday.

Also, I haven't had a chance to respond to the many folks who have sent their well wishes since the transplant day, please forgive me -- please know that we did get your call, cards, emails and appreciated them very much.

One last item....We'd like to thank Dan Lebatard and his listeners at "790 The Ticket" -- Dan has started referring folks to our web site and cause and we appreciate it very much. We've known Dan's family for a while as most things in our life that relationship can be traced back to St. Bart's in Miramar. I remember seeing his Mom after church and she would always tell me I was the new and improved model, a refined little Chuck (my Dad). I don't know how refined I am, but I am thankful to have friends like them.

Friday Mid-Day

Thought I'd make an update....Trish is having a bad day today....Nausea seems to be back fully today and Mucuscitis appears to be setting in more now than it did the last time she had Cytoxan in February/March. mucuscitis is when the lining of your mouth and nasal passages sheds and makes your mouth, throat and nasal passages sore, red and painful. I think today is likely to be the start of those bad days the doctors promised were coming. Trish said the docs also said in rounds this morning that graft vs. host disease won't rear its ugly head until her blood counts start coming back and that's a few weeks away at this point. Trish is about to get some attivan and some sleep.

Friday morning

Thought I'd make some notes this morning after last night. Trish is still feeling pretty good (all things relative). Probably the biggest thing I noticed last night was the sudden loss of hair. Wednesday Trish still looked like her hair was growing in nicely, from the previous chemo's hair loss. Last night, she was nearly bald. Her hair seemed to fallout on top and left her with a Nero-like haircut. She asked me to bring her a cap to wear -- her head was getting cold. So I'll bring her the cap Chrissy knitted for her when we came up in the winter. Oher than that, she is doing fine. Her counts are down low and next week is supposed to be a rough week, because her counts will be low and the new marrow won't yet be producing cells.

I am working from home today and catching up on laundry. I'll head into the hospital sometime after lunch. If there is anything significant tonight, look for a new post.

Thursday - Day 9

It's been 9 days since the transplant and at least another 21 days left to spend in the hospital. Trish's friend nausea is back today. Just enough to be annoying, but she sounds good. Lots going on at work in Baltimore these days and I have been spending more time at the office than at the hospital. Her Mom and sister just left today.

When Trish and I flew home for our two weeks, we found a Carvel in the mall near my work (which is near the airport). So I am armed today with an insulated bag and will try to bring her back some Carvel tonight. When we were dating and newly married, she would always want to stop at Carvel for a cup of Chocolate and Vanilla ice cream. In later years, I would always ask her if she wanted to stop and she would never be in the mood. But it remains a favorite.

Her hospital room is pretty naked just a few cards up and with 21 days left to go, feel free to send a card and help decorate the room. When Trish was on the other floors she developed a reputation of being the patient who got the most mail. Feel free to help her regain that reputation.

Don't forget the dinner dance coming up on the 28th, sounds like it will be lots of fun. The food should be good too, our former neighbor, Klaus who is the executive chef at the Eden Roc will be supervising the kitchen.

Tuesday Update

Which would you prefer -- feeling sick or bored?

Trish is bored today and she isn't sure if she prefers feeling good and being bored or feeling sick and not lacking for entertainment. She tells me I'm not boring, just not always in the room.

She had a nausea free day and ate fairly well, which is a good thing. The doctors told her this morning to eat very well this week, because the next three weeks will be rough weeks and she likely won't feel like eating. Aunt Mary sent some homemade chicken fingers which Trish enjoyed for dinner tonight.

The boys flew home today and their flight was delayed by an hour. My cousin Marisa and her two little girls (her husband is in Iraq) are staying this shift with the boys.

One bit of excitement today, Trish received a letter from her donor. Though she wanted to write to him right after the transfusion, she hasn't been up to it. She started writing him tonight. The NMDP doesn't allow you to identify yourself or your location in the letter and reviews and censors each letter to avoid violating the rules.

Here's what we know about Trish's donor:

He's a fireman (it was censored, but we think he is from New York City). He signed up to be a donor at work. He is married and has two boys (age 4 and 2) and has a third child on the way.

Funny thing -- about a month ago when Trish needed to go through another round of chemo, he had a stomach virus and wouldn't have been allowed to donate. Someone told me once there are no coincidences......
They both cleared their hurdles.

Trish and I our excited because he told her that he would love to meet us and we would too. We just have to make it through a year and they will allow us to meet.

He also said that if Trish (our veggie queen) starts craving T-bone steaks and lifting heavy items -- that's him.

So next time you pray for Trish, please remember a fireman who was surprised that he could help a stranger, but was very excited to do it. Without him, we would be in a not so happy place right now.

Monday Update

Trish is looking and feeling pretty good today. Still a little bit of nausea, but nothing like the last two days. She's definetly awake if you want to give her a call. The boys head home tomorrow. Her Mom, Sister and Kristie head back Thursday. I think Trish and I are also suffering from too many visitors all at once.

I need to focus on some work items the rest of the week and I think I'll also sleep a lot. Trish looks good. She's going to miss the boys, they like "hanging out" with each other. They raided the vending machines earlier for some potato chips -- the salt will help Trish keep her blood pressure without added fluids. The time with the boys: priceless.

Sunday Morning Update

Friday the doctors/nurses did a good job of keeping Trish sedated and it broke her cycle of nausea. Yesterday they didn't sedate her as much, she was awake more, but also nauseous and vomitting more. They have told her that they will start TPN (the IV feeding bag) within a week if she is still nauseous and not eating. They need to sedate her better than they have.

Other than that she is doing well. Her face looks like she is well tanned bordering on sunburn -- likely an effect of the busulfan and cytoxan more than the transplant. When GvH starts it is usually seen in the palms of the hands and the feet. So the nurses have assured me this is not yet GvH.

The chemo - for now - is done. We're not expecting to have to go through that again. I need to jump in the shower - Trish wants to pick up a card for her donor (which we have to send anonymously) and the gift shop closes at 2. she couldn't walk to the gift shop with the chemo running. We'll see how she feels, I may have to pick it up either way.

Day 3 and the Cytoxan is flowing

Trish had a pretty good day yesterday....It was pretty much nausea free. This morning, she was back to throwing up again.

Dr. Griffiths visited and said that it was anticipatory nausea. Trish started her chemo at about 1:30 today and the cytoxan is still flowing as I am writing. Trish's Mom and Sister and the boys visited Trish this morning -- I had to work. They got to visit while she was still awake. She was well asleep with meds by the time I arrived. (I was later than I intended not just because I was working, but I-95 was shut down South bound and I had to take Pulaski Hwy all he way down.) A few minutes ago she rolled over and noticed me. We talked for about 20 seconds and she rolled back to sleep. She won't be awake again really until Sunday. That'll be a good birthday present for me.

Last night we went for a walk and saw one of her nurses from her first rounds back in 2005, Brian. He thought she looked great for a MUD (matched unrelated donor) just two days out from transfusion. MUDS tend to have a harder time than folks getting marrow from a sybling, but a better match is always better than a sybling partial match.

Well, I am going o go back to work now. I'll make more updates over the weekend. Feel free to mail in cards to Trish's hospital address and send email -- she likely won't be up to talking till Sunday.

End of Day 2

Trish is doing pretty good this afternoon. She had a good visit with everybody. Her speech is still slurred, but that should pass in a few days. If the infection in her central line doesn't clear, they will likely replace it with a PICC -- I think if they give Trish a choice she would choose the Hickman again.

I know I have said this a lot in the last few days, but thank you. I hope to get back to folks over the weekend who have written and called this week, but I can't promise. Please know that your well wishes and prayers are read, felt and appreciated.

Tomorrow they will start a round of cytoxan around noon-ish and the next two days will likely really stink for Trish. If you want to talk to her ry her before noon tomorrow.

Day 2

Good morning and welcome to day 2. Yesterday was a busy day for me. I had to pick the boys up from camp and had a lot of work related things to accomplish. The boys had a great time at camp and enjoyed a short visit with Mom late last night after getting their friend Eli to the airport.

Today Trish's Sister, Mom and our niece Kristie come into town. If I can wake the boys up we will meetthem for lunch in Baltimore.

Trish was kept fairly sedated overnight last night to help control her nausea. She is worried that her speech is slurred and that it might not be a by product of the sedation. I am pretty sure it is a by product of the sedation. While I was talking to her on the phone this morning, she slipped and fell, but didn't hurt or hit anything. In fact her nurse checked her out while I was on the phone and she was ok.

Her blood work from last night revealed an infection in her central line. They debated removing the line and placing a new one or treating with antibiotics. They settled on antibiotics and will start those today.

Today is a day of rest for Trish and tomorrow she will be given more chemo (Cytoxan) -- she'll get that tomorrow and Saturday.

I keep mentioning that I will tell you about the process and keep not having the time to write about it. I'll take a few minutes now to try and explain.

So, on Tuesday, Trish received an infusion of bone marrow/stem cells from a fully matched unrelated donor. Friday and Saturday she will receive more chemo (Cytoxan) designed to control and limit graft versus host disease. Graft versus host disease is the effect of the new marrow and Trish's own cells fighting each other. You want some of this (mildly) to fight the leukemia (graft vs. disease), but full blown GvH can be fatal.

What we want to happen now is engraftment. You probably know about grafting trees, you take two cut plants and tie them together and take good care of them and hope that they grow together and become one -- sorry Marianna, I am sure you could have explained that better.

The concept is similar with a bone marrow transplant. You take marrow and sttem cells from a donor, transfuse into the patient and hope that they setup shop and begin to grow and work in the new host. Stem cells are pretty smart. While they are transfused into the blood stream, they make their way fairly quickly to their natural home -- inside the bones. Where they set up shop and start making more new stem cells, which grow up to hopefully be new healhy white cells, red cells, platlets and all other wonderful cells in our blood. So we will once again at some point, about 30 days out, start watching very closely her blood counts (see the counts link in the left column). Engraftment will be confirmed and we will watch the counts. Trish will have a bone marrow biopsy sometime around Day 30 to confirm all is going according to plan.

Welcome to Day 1

Good morning!

First and foremost, thank you. Each and everyone of you. Thank you for your e-mails, calls, prayers and good thoughts. The day was just too much to respond back individually. I hope to make a dent n responding to folks later this week.

Remember the toast from last night? It didn't last very long, she threw it up as I was packing up. She looks GREAT this morning. Though she still has a headache and nausea.

She's alert and busy trying o keep food down. She should have two days to reset and feel better before they send in more cytoxan (chemo drug). The cytoxan she got Sunday/Monday was designed to clean out her marrow and prevent it from coming back. The Cytoxan she'll receive on Friday and Saturday is designed to help prevent graft vs host disease. They be giving her this dose at Noon instead of 4am and it will not have steroids in it like the first dosing. They should also do a better job of helping her sleep through it this time thanks to our friend Dr. Griffiths.

Speaking of which, Dr. G came by later today to insure she would see me as well. It was a nice visit, it always is. Trish and I think she is going to lean towards lab and research work, but if you ever becomes an oncology attending - I would definetly recommend her if ou found yourself in need of one.

Later I will explain what we are waiting on and what we can expect to see now that the transplant itself is done. Everyone we know that has been through this has said the transplant itself is a non-event. In many ways they are right. It is however a critical milestone. It is a new beginning in so many ways. It is probably the only event one can experience that truly makes the popular phrase of the 70's ring true: " Today is the first day of the rest of your life."

The marrow arrived at 5:50p.m.

A short young man in a lab coat and a mullet hair cut peered into Trish's door at 5:50 p.m. and walked away. I told Trish I thought the marrow had arrived. A few seconds later her nurse was paged to room 5, her room. I walked to the door and peered out the window. The man indeed had a small cooler in his right hand.

A few more minutes and Josephine, Trish's nurse, and the man walked in with a red bag and new IV lines. They confirmed her ID and the patient information with the marrow. Patricia DiComo, 9 - 6 - 63, medical record number.......

For better or for worse there is no turning back now. I begin to cry and pray simultaneously. I pull myself together to check on and support Trish who is grabbing for her yellow bucket to throw up again. She feels fine except for the constant throwing up. She doesn't consider herself feeling better today, but the rest of us see a marked improvement.

The nurse has come in and explained that she will be starting the drip slowly and checking Trish's blood pressure every few minutes. If she does well she can increase the speed of the drip. The marrow will drip in via gravity, no pump assist. It should take 2 1/2 to three hours to complete. I believe she said it is a 900 cc bag.

Trish is getting attivan and haldor to help with the nausea before she starts the transplant transfusion.

Somewhere tonight, there is a man who has a very sore back. We know nothing about him and he knows nothing about us. One fact is true. Without him, we would have no hope, because of him we hope for the best and move on. While the last two years have been exceptionally rough, the next 100 days will be much rougher. It is highly likely that Trish will have some effects of the transplant that will not be pleasant. It is even possible that these effects will kill her. But it is truly the only chance she has to see Andy and Matt complete their journey to become men.

It is 6:32 now, the IV lines are placed on Trish's central line and connected to the bag of marrow. The cells begin their journey into their new host.

7:23p.m. No reactions so far. Trish gave us a scare as she said she was starting to get itchy, but no hives or anything to be concerned with. Trish said it was just the normal itchy. The bag appears to be about half way through now. All vital signs are normal. Josephine says that if the patient is going to have an immediate reaction, it usually happens in the first hour. We are just 3 minutes shy of the first hour now and all systems are go!

A random observation from room 5
Some people believe it is good luck to rain on your wedding day. It rained on ours. My guess is that this superstition was perpetuated by the parents of every bride and groom who has been married on a rainy day. Well for the superstitious out there, it poured today in Baltimore. A nasty rain and thunder and lighting storm right around lunch time. It stopped around 2 or 3 this afternoon. At the moment, I have one eye on Trish and another out the window, watching a beautiful and bright sunset. While I would rather place my bets (and trust and hope) in both prayer and the doctors and nurses. I am taking great pleasure in the superstitious signs lining up in our favor too. You can never have too many fingers and toes crossed while praying. Trish continues to do fine.

9:10PM The bag of marrow is almost done. I think it will probably run a little longer than 9:30. For those who are curious. I took the two pictures below from my cell phone camera. Trish is curled up in her bed wrapped in the prayer shawl that Phil & Karolyn's friend sent her. The big red bag wrapped in gauze is the precious marrow (click on the picture for a better view).

9:55pm The bag is empty and the little chamber under the bag is emptying now. We'll call the nurse soon to flush the bag. She says they actually flush the bag to insure Trish gets all the cells. Tomorrow, I'll explain what happens next. Trish has slept on and off through the whole process and is feeling better. She hasn't been nauseous snce the transplant started. Dr. Luznik (her attending BMT dr.) checked in with us before heading home. He seemed to be in awe and respect for the process that I am sure he does almost every day. What would we do without this process. It's nice to know that the guy overseeing the procedure (for many years) is still in awe of the power of the process and what it means.

10:25pm The transplant is done. The bag finished dripping, just after 10pm and Michelle (Trish's overnight nurse) cleaned the bag. They actually flush the entire marrow bag until it is clean and in Trish -- they don't want her o be deprived of even one cell. While Trish slept through most of the transplant, she is awake and fairly alert now. Than what will be a favorite moment for me, forever, my wife who spent the day trying to eat unsuccessfully, turned to me and said, " Can you make me some white toast." I almost started laughing out loud. Instead I searched for the individually wrapped pieces of white bread -- which were hard to find tonight -- her ward(B) was out, A and D were out and finally I found some on C and began the ritual of making toast (click here, if you are clueless on the joys of toast).

Tomorrow is Day 1 in oh so many ways. Goodnight. God Bless you. We love you.

DAY ZERO UPDATE -- TRANSPLANT EXPECTED EARLIER

We just got word that the marrow should be on the floor between 6 and 7pm tonight -- 2-3 hours earlier than originally expected.

While Trish is feeling better than yesterday and the day before, she is still feeling pretty rotten. The nausea just won't leave her. We did get up and do three laprs arounf the nurses' station and she did try to eat breakfast and lunch -- it just won't stay down.

Stay tuned. I'll send an update when the transplant starts.

Quick Day zero update

Trish is feeling much better today, but she is still not feeling good yet. Still nauseous, but she is awake. Dr. Griffiths came by for a visit today. Trish was asking about her yesterday, she was in Colorado on a symposium. Dr. G was mad that they missed all the notes about giving Trish Reglan for the nausea -- I'm mad too, because I forgot about it. Anyway, she just took her first dose of reglan. So hopefully she will feel like going for walks this afternoon.

Today is day zero -- the transplant day. The donor has likely been harvested by now or maybe is still in progress and the marrow will be processed, and ready for Trish about 9:00p.m. tonight.

Again the "transplant" is just like a blood transfusion and pretty much it should be a non-event. The real event in the transplant is the first 100 days after the transfusion. We first wait to see if the graft will take, than if/when/how graft vs host disease will show up. The first 100 days are critical, the first year is tense.

Look for a late update at 9 and a little after for more news on how things are going.

She's back

Trish started to become more alert around dinner time today. I knew she was feeling better when she asked me to go get her some soft ice cream. She also took a shower, another sign that she was feeling better.

She talked to the boys and her Mom and friend Cathy. She should feel a whole lot better tomorrow. It's good to see her feeling better.

Tomorrow is day 0 -- transplant day.

We don't know what time she will receive the transplant, but it is tomorrow. I'll try to make a posting as soon as it starts.

Trish is getting a MUD -- matched unrelated donor -- it is one of the more dangerous transplants, but we are hoping for the best.

Today is better....but still not good

Trish feels better today, but as with life everything is relative. She is asking for sedatives now to sleep through the pain. The anxiousness is subsiding.

The first thing Trish asked me this morning was how the boys were doing at camp -- they both called me last night, so I was prepared with a real answer for her. They are both enjoying camp -- the lacrosse is good, the weather is hot. Matt was waiting for a Pizza in his dorm room. Andy was excited that they had $100 sticks for $50 -- so all is right and normal in the boys world, or at least as normal as it can be with your Mom in the hospital.

This morning the nurse told me that the Cytoxan was given with steroids and I think the steroids are more the problem than the cytoxan. Though the Cytoxan is a much heavier dose than she received previously.

She will likely sleep today away and I have disconnected her room phone so it won't disturb her. Feel free to call me if you want a personal update.

She will receive two days of Cytoxan after the transplant, but it will be without the steroids so we'll see how that does for her -- I think it will be much better. Tomorrow is the big day. The donor will be harvested in the morning and Trish should receive the marrow sometime tomorrow. This is it. Day zero is tomorrow.

Thanks to everyone who continues to support us in everyway, I pray that you never have to experience anything like this any more than you have experienced it through us.

Still a few more days to respond to the survey in the left column. The software I use just added the survey feature so I thought it might be fun to use.

What a difference a day makes -- Can you say crappy....

I tried to tell you yesterday would be a great day to call Trish. Today is not. She started her Cytoxan at 4:00a.m. (right about the time I was finally getting to sleep -- but more on that later). Trish has done well with Cytoxan in the past, but the dose this time is much higher than what she received in the past. She had some nasal burning and they gave her Benadryl -- but a bit too much (even though we told them her dose level). The Benadryl made her anxious -- she feels like she is about to jump out of her skin. To counter act that for her they gave her attivan. Attivan will make her sleep. So while she was full of energy and wandering around the hospital all day yesterday. She is in bed today and feeling awful. To top all of this off they also gave her Oxycodone which she hates -- and we also asked for alternatives for...I spoke to her nurse today and she is getting with the doctor to insure that the adjustments are made. I thought we were on top of the game, because we know each time you get a new group of nurse/doctors they have to learn the needs and we told them up front this time, but I guess no one did anything about it. This too shall pass.

She will get Cytoxan today and tomorrow. Tuesday will be the transplant day. She'll have two days of rest and than get two more days of Cytoxan. This second dosing is designed to keep Graph VS Host disease at bay and is a clinical trial being done here at Hopkins. They have had good success here using that to control GvH before it gets bad and they treat it. Many hospitals use steroids to treat/prevent GvH.

I am groggy today today -- though no where near the grogginess of my beautiful bride. I was up till about 3 or 4 this morning waiting for Matt's lost luggage. If we knew for sure what plane it had come in on I would have been much better driving back to the airport. After 3-4 hours of rest, I woke the boys up and after they consumed their fill of Aunt Mary's famous pancakes. I took them to camp before coming here to the hospital. They are all checked in at Hokins LAX camp and should have a fun week. They finish camp on Wednesday at about 3:30. Trish's Mom and Sister come up on Thursday.

While you may have missed your chance to call Trish yesterday, today would be a good day to say a special prayer for her. In fact, I think I'll go down to the hospital Mass now and grab a light bite to eat -- it is going to be a long day.

SUNDAY UPDATE 2
It's now about 3:15pm.... About 45 minutes ago Trish arose from her slumber, but was very restless and had the anxiousness that she had early return. She couldn't get comfortable. She said her arms and shoulders felt sore. The doctors came in checked her out and ordered a CT scan. It was a tough time for me. Today has been reminiscent of the "bad" days of the earlier chemo treatments. Days like today are bad on both her and me. They are considering getting a sitter for her tonight and I may stay too. We'll see how she does later - I really need to get some good sleep to be useful.

Greetings from a warm, but not so humid Maryland. Trish is feeling pretty good today. She slept a lot yesterday when I was with her most of the day. Today she feels well and I am with the boys. I picked the boys up this morning. Their plane was early, but we spent an hour waiting for the luggage to be unloaded. To make matters worse Matt's suitcase never came. They quickly told us it was still in Ft. Lauderdale. Funny thing is that his was the first to be weighed and checked in, sounds like they just forgot to put it on the conveyor belt. It should be landed about now 5:30 and courier to Havre de Grace sometime tonight.

After the airport fiasco, we headed to the hospital and the boys visited with Trish for about an hour and than I took them to Fells Point for lunch. Andy, Matt and their friend Eli are up to attend the Hopkins Lacrosse Camp this week and than Andy and Matt will stay up to visit post transplant.

Trish is feeling good now. Today will be her last day of busulfan and the Cytoxan starts tomorrow -- at 4 o'clock in the morning. They will flood her with fluids and a drug called Mesna to insure that the cytoxan doesn't hurt her bladder. They say she will be making many trips to the bathroom.

The transplant is on track for Tuesday. My guess is it will be late in the day. The boys finish camp on Wednesday. It will be a busy week.

If you read this Saturday and have a chance to call Trish in her room please do so. She's bored today. My guess is she will be sleepy tomorrow when I am there with her. The phone number is in the left column - I am sure she will appreciate the call.

Friday Update

When I arrived this afternoon, Trish was sleeping. She had some nausea this morning -- nothing as bad as it has been up to this point, but they had given her Attivan which translates into an instant nap time. She was very awake when I spoke to her earlier in the day from Aunt Mary's and is more awake now. She did 20 laps this morning. You may recall that 26 laps around the nurses station is a mile. She is well on her way to reclaiming her title of "lap queen" of the 5th floor.

Her attitude has been good. The chemo still hasn't made her feel really bad yet, but we know that that will change soon. She has one more day of busulfan and than the cytoxan starts on Sunday. Busulfan was invented here at Johns Hopkins about 40 years ago. While the goal of every chemo past has been to knock out her bone marrow so that it could come back clean. The goal now is to knock out her bone marrow so it won't come back.

So the doses and the stakes are higher.

If you have been thinking about calling her -- there is no time like the present. She should be up to calls this weekend. But may not feel up to talking at the start of next week.

Our boys fly up tomorrow morning with their friend Eli. After picking them up we'll stop at the hospital for a visit. Most of the day I will spend entertaining the boys before dropping them off at Hopkins Lacrosse camp. They will spend most of next week at the camp, than stay to visit before heading home.

CBS News did a story on bone marrow donations the other night and I was able to answer some questions for the folks on their web site. If you saw the piece, the donation method they showed, is not what Trish's donor will be doing. He will actually go under general anesthesia and have the bone marrow harvested in much the same way Trish is biopsied. A needle into the hip bone. He'll likely be sore for a few days to a few weeks.

Please keep the prayers and good cheer coming! Thanks to all those back home working on fundraisers.

Thursday Update

Trish's day could be summed up with two words: sleepy and itchy.

The anti-seizure medicine they give her to prevent a seizure from he busulfan (chemo drug) makes her itchy and unlike the past itchies from regular chemo -- there are no hives or outward signs, just lots of itching. The Benadryl -- given to stop the itching -- makes her sleepy.

Tonight they will try something other than Benadryl -- because it really isn't controlling the itchiness too well. Other than that she is feeling well. Her blood counts are on the way down -- which is one of the goals of the chemo. All is as normal as it can be for now. She will likely start feeling poorly in the next few days. Keep the prayers and good cheer coming.

Busulfan will keep Trish busy ....

They will be taking blood each hour through the night and Trish will receive her second dose of Busulfan at about midnight tonight. I don't think she will be getting much sleep tonight. She's dosing now and I will pack up and leave for the night soon. The nasty weather is nearly done. Tonight we had a horrible lightning storm. Glad it is over in time for me to drive home. It will probably take a day or two for Trish to feel bad, so if you have a chance, give her a call or send her a card.

Trish drives herself to the hospital.....

well, almost....Everyone wanted Trish to try cousin Tony's bike before we got in the car to head to the hospital, so she complied.

We left for the hospital at about 11am. They have been doing things slowly and we probably could have come in later, but we're getting things done. They let us go to the cafeteria for lunch and Trish had a Subway salad. I tried their new brisket sandwhich -- for the fast-food brisket enthusiast, I would stick to Quizno's version of the sandwhich.

The BMT fellow is examining Trish now and the Busulfan chemo starts at about 5:00p.m. She'll be receiving chemo to kill off her marrow and stem cells, so that she can receive the donor cells. That should be on the 10th of July.

I have posted Trish's new room phone number and hospital address in the left column. It is best to call after 11 in the morning, to insure you call after the doctors' rounds.

UPDATE - 7:55pm July 4th
The first dose of Busulfan is in. So far, so good.

New Day, Next Step

The weekend was nice. We went to a BBQ with some of Aunt Mary's longtime friends. They lived on a hill even higher and with more views than Aunt Mary. Maryland is a pretty amazing place. Baltimore has the highest murder rate and just north of it is beautiful farm lands, that indeed are still very much small town America.

We went to Broom's Bloom Farm for ice cream Sunday night. It was packed. A little shack on the edge of a dairy farm. It was packed. Young families, kids running everywhere and old folks sitting quietly at tables. All enjoyed their ice cream, no one complained waiting in line for their turn to order. They had live music (a friend of Aunt Mary and cousin John -- in fact John taught him how to play the guitar). Trish said it was like a scene from a movie. The weather was beautiful. Cool, in the 70's. The sky was clear -- blue with a few wispy white clouds floating lazily in the sky.

The other amazing thing is that each of the communities in the area had 4h of July parades, fireworks and other celebrations (frog jumps, turlte races, etc). They start these events on the 29 or 30 of June and have something going on almost every day through the 4th of July. In fact, if Trish is up to it we will go to one of Aunt Mary's friends houses to watch fire works tonight. I could get used to this place.

Monday, Trish and Aunt Mary had a very busy day. They picked blueberries, strawberries, peaches and sour cherries. I talked to her a couple of times from my office in Glen Burnie and each time she sounded happy. The two of them giggled and sounded more like two young school girls playing hookie from school than two ladies fighting blood cancers. I worked, they played -- it was a good day. They ended the day by baking a sour cherry cobbler. It was good. It was good therapy too.

Trish is in an operating room at the moment getting her new Hickmann in place (central line). We started this morning signing her admittance papers. We'll stop by IPOP before leaving, so they can test Trish's new toy -- flushing it and probably drawing some blood.

We will drive down to the hospital tomorrow around 11. They will start her chemo tomorrow, 7 days of intense chemo leading up to the transplant.