Late post on Wednesday

Trish wise not much happened today. They doped her up in the afternoon so if you clled she might have sounded sleepy. On the Chip and Mom front there was lots of excitement. I didn't come into visit this morning and went straight to the office to work. I figured I would work at the office till 2 and pick up Trish's Mom at the airport we would visit and have a nice dinner after checking her into the hospital housing.

Well it didn't work out that way. Trish's Mom only had 45 minutes to get from Terminal T in Atlanta to Terminal B and it just takes longer than that. She missed her flight and caught a later one. Because she was late, she wouldn't be able to check into the townhouse, so I stopped working and drove from my office near the airport to downtown Hopkinsville, checked her in, tried to visit with Trish. She was out of it, but asked me to fix her cell phone. I fixed it and then headed to the airport where I arrived just as Trish's Mom was walking to the luggage area. Picker her Mom up went back to my office to get the stuff I had left behind when I ran out to check her into the townhouse....We went grocery shopping and headed to the townhouse to move her in. Than to the hospital to visit Trish. Trish didn'tremember me stopping by earlier and was wondering how her cell phone got fixed. Still waiting for dinner, but I have had a very busy day.

I fly home tomorrow. Trish gets more chemo on Friday and Saturday -- so if you want to call her tomorrow is it till about Monday...... Trish's friend Susan is planning on coming up in March to visit her, so that should be good, Last time around Susan was able to visit us at Mt. Felix which was fun for all -- this time Trish will be in the hospital when she visits for sure. Remember flu shot (not nasal and no sickness signs) -- You have to wash your hands with purell, put on gloves and a gown -- it's a process visiting Trish....but we all Love her and it is worth it when I see that big smile of hers.

Take care and thanks for your continued support.

10 -- 6 -- 5 -- 1

Trish felt pretty good today. She started the day with a strong headache and it was knocked out with morphine, just one milligram delivered very slowly. Everyone out there with migraines, forget bout the imitrex and Tylenol and all that other stuff. Ask your doctor for morphine. They tend towards the heavy stuff here.

She talked to a lot of people today -- Thanks for calling her. Between now and Friday all the good cheer you can throw her way will be appreciated. She probably sleep much of Friday, Saturday and Sunday, as Friday and Saturday are chemo days.

On the way out tonight I saw Dr. Griffiths, we spoke for a little bit. Later she stopped in on Trish and they had a long conversation. It included reviewing the road map to a transplant and the current status on her donor situation. So where do I begin? On the donor front, the numbers at the top of this post do have significance. When we left Baltimore last time we were told that the initial donor search, we hoped to never need, yielded 10 matches. When we arrived in Baltimore on Feb 13th, we were told that the list had been whittled down to 6 donors. Tonight, Dr. Griffiths told Trish that the list was down to 5 and that they had identified the top candidate and he appears to be willing. He just needs to go through the medical clearance now.

All of the final 5 are men and that is good too! Men make better donors than women, why? Because they don't have babies, which helps create extra antigens in their systems and make transplants more difficult. Interesting question to use at your next party or maybe for Paul Castronovo's "You can't win" contest.

One other thing that Dr. G reminded Trish and everyone who will be around her is to get a flu shot and if you aren't healthy - don't visit. On the horizon the next major milestone after the chemo set for this weekend is the bone marrow biopsy scheduled for Day 14 (March 9). This will be the first time they check to see if the chemo worked. If there is no sign of Leukemia we keep moving on. If they see Leukemia, this means they were unable to put her in to remission and we re-group. Dr. G says that if this happens there are things they can do, but the chances take a turn for the worse. Not something we are going to focus on for now.

Trish's Mom arrives tomorrow and I head home on Thursday for about two weeks. The way things stand right now I will be home on Day 14. The bots and I will drive up on March 15 -- the boys will fly home on the 18th so they can be at school the next day.

Pray, Call, Write. Thank you.

She's back...

She has truly arisen from her slumber. Trish was back to her usual self today, which means she was bored out of her gord.She went for several long walks, listened to audio books, music and read some regular books -- she even broke down and watched some TV today. If you didn't call her today and wanted to call her you have till Friday to catch her feeling good. Expect her to be back in sleepy mode starting Friday. She even read her own email today. I had read her email to her over the weekend. Time for me to get some sleep again. If you find yourself bored or with a few minutes to kill give Trish a call. She'll really appreciate it.

Monday morning

I slept in Trish's room last night. Aunt Mary gave me strict orders not to drive. It looked good here, but she thought the roads leading to her house may be iced over. I'll stay this morning until after rounds, than head back to her house for a nap and a shower. Before heading back to the hospital/office. I scared some people at work this weekend...I got a lot of work done and they all thought they had to complete their parts this weekend too. One guy called me back all concerned asking if it would be alright if he waited till Monday....

Trish started refusing the meds that make her sleepy last night. She hasn't been experiencing the nausea which is what the sleepy meds prevent -- so all this is good. She should be herself today and be able to talk, read, etc. I'd wait till after 10 or 11 this morning before trying to call her though. She ate some soup last night and it stayed down. She says she can feel it sitting in her stomach. I know I couldn't feel the small bowl she had in my stomach, but we are all happy she ate some.

Hopefully, she will strengthen and feel more alert all week till they start this again on Friday. I booked my flight home for Thursday and should get home in time to catch the end of the boys Lacrosse game.

Hope everyone has a good week.

Some pictures

Since it is a quiet day...I thought I'd post some pictures....I'm posting today's snow and me dressed up in Trish's room here, but also adding pictures taken on other days on that day so you can hunt the new ones down....Looking for a way to better manage your digital pictures? Try the Google Pack which includes Picassa -- I was surprised how good this free tool is...You can download it using the links to the left or at the bottom of these postings.

My Drive:


On the Left, Aldi - the German Grocery store in Baltimore (for Helmut & MarcO) -- On the right, View from Trish's room. There used to be a parking garage there, but soon it will be a new heart and children's hospital.

On the left, another shot of the construction site out Trish's room.
On the right, The view across Orleans Street to the employee parking garage from Trish's room.

Until they clear Trish, you have to wear a gown, gloves and mask to visit her....

Sunday

Hard to believe it is after 4pm already. I drove in about 10am this morning. Nothing was falling from the sky when I left the house, but as I approached the city - snow began to fall first slowly than pretty hard. The empty lot where the Broadway garage was demolished during Trish's last stay was a red clay when I arrived, but now is a blanket of white and they suspended construction. It is supposed to come down as ice later, but right now it has shifted from snow to rain. If it is bad tonight I will sleep in the chair here in Trish's room.

I went to Mass at the hospital -- haven't done that in about a year. after Mass the priest came up and gave Trish the Annointing of the Sick and communion. She's slept most of the day away today, but may start lifting up on her sedating meds tomorrow. So hopefully she'll be able to chat better tomorrow.

Not much more to report here today. No chemo drugs today. She'll get those again on Friday when her Mom is with her. Stay tuned. More tomorrow.

Saturday Night Late Report

I have never seen Trish sleep so much, not even during her first bout with chemo drugs. To be fair they are sedating her more now, than they did last time. That's a double edged sword, both good -- controls her nausea, she sleeps through many of the side effects, but if you know anything about Trish -- she doesn't stop, doesn't rest and she handles pain fairly well. It is very frustrating to her to be in bed all day. She can eat a regular diet, but hasn't eaten anything. They will start TPN tonight -- the nutrition bag. I have missed rounds every day so far -- they seem to be earlier on this ward than they were on 5a, so I emailed Dr. Griffiths about finding a balance between sedation for the effects and letting her feel like she's awake at some point when it makes sense to lighten up on the sedation. For those who have called her in the last 24-48 hours she is trying to talk to you but her quality on consciousness varies greatly. To make matters worse she has had a lot of wrong number calls today too. I'll keep you posted on how she's feeling so you'll know when it is good to call.

Today was the last day of chemo till the end of next week. So I am hoping she will start to feel better this week before they make her feel worse again.

Don't forget to send those cards to help decorate her room. Linda L from her work wins the award for getting a card here first! She's also gotten some pretty good email jokes from the Alabama crew. Keep the good cheer coming and sore knees and folded hands aren't a bad way to spend your time either. Thanks for all your support, we really do appreciate it.

Saturday Mid-day

Welcome to Day 2. Trish received red blood last night, guess her crit was low. She's sleeping like a baby today. Every once in a while I'll ge up and just stare at her to make sure her chest is going up and down, and it is. It's the simple pleasures. They probably have her well sedated to avoid the nausea. She is still vomitting whenever she moves. I expect to her sleep today away. She should have a fairly good week though, because she won't get chemo again till next Friday (Day 8). Her Mom will be with her then and I will go home the night before. I'll return in about two weeks which should bethe time her counts start coming back and she would be eligible to be discharged. A discharge really isn't a discharge though as it means IPOP every day for a week or two.

The boys are playing Lacrosse today in deep south Dade county. When I tried to get an update at what should have been 30 minutes into the game, my Mom told me that they were still waiting for the referees. She'll call me at half time with an update if they ever get started.

In the Chip is really human department -- Trish and the boys like to think that I think I am perfect. Trish has gotten her fair share of traffic tickets, but I am at a lifetime of 1 and holding. On the way to the hospital today I was pulled over for going 83 in a 65 mile an hour zone. The trooper had empathy for me with all the Hopkins stuff strewn about the front seat of the rental car and let me off with a warning....But see guys I really am human....

The night is ending better than the day began...

It's just about 8pm and Trish is resting (sleeping) well now. Today was marked by a lot of vomiting. Because of her nausea they did not perform the bone marrow biopsy today. Trish was upset as she wanted to be a dutiful guinea pig and provide the marrow. Today's scheduled biopsy like yesterday's was strictly for the benefit of science and had nothing to do with her care. She wanted to help, but couldn't. I was going to head into the office today, but didn't because I was afraid to leave her alone. I probably got more work done in her room today anyway.

Tomorrow will be another day of chemo, both meds. I am hopeful that the nausea is over. They will order a TPN bag tomorrow in the event that Trish does not eat. TPN is the bag of nutrition and if you were following last time it is yellow -- the nurses call it a banana bag -- Trish and I call it the urine bag. Either way it will insure she gets what she needs.

Speaking of getting what you need. Last time I stopped at Target between Aun Mary's house and the hospital almost every day. Trish and I thought we had that beat this time and we packed everything we needed. Well so far I have stopped there every day since Trish was admitted and I need to stop there tomorrow to get some soft tissues for her. Aunt Mary will be happy I am bringing Trish's laundry home to be cleaned tonight.

Also, you may have noticed that these posts are starting to scroll off, that's where the archive box on the left comes into play you may need to click on it to retrieve an older post.

The night time nurse's aide just came in to take Trish's vitals and her perfume was way to strong. I'm going to talk to the nurse, cause Trish got really sick right after she left and I could still smell her where she was standing.

Just for the record....

Day Zero was a heck of a lot better than Day 1. Trish felt pretty good most of yesterday. She was petty sleepy last night, but she didn't feel bad. Today is a whole 'nother story. You may want to hold up from calling her today. She is nauseous. Can't eat because they will do a bone marrow biopsy today at 4pm - but with the nausea probably doesn't want to eat anyway. She began receiving chemo today at 8am, that lasted two hours, they wait two hours and start another chemo drug, then two hours later do the bone marrow with conscious sedation. A lovely day. Our friend MarcO from Germany called today while I was in the room and Trish spoke with him she smiled her big warm cheshire cat smile while she talked to him. Barbara and Bethany from work called too and she tried to offer her help, but they could tell she really wasn't up to it and said they would call her later.

So begins the not so fun part of this experience.
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editorial ----------------------
Health care in America sucks! It's not the care givers, it's the system. We allow monopolies in utilities because we can't do without reliable power for our lights, businesses, homes, computers. But we segregate Americans ability to receive quality healthcare and we do so in such a way that it is a random matter of who the haves and have nots are. That is it is not about money, but who you happen to work for and who they happen to pick to either administer their healthcare or provide it. This sucks! Our country desperately needs a better healthcare system, it doesn't need to be nationlized or socialized per se, but I shouldn't have my healthcare determined by who I choose to work for. Thank God that the Clinton's got HIPPA passed -- it has it's issues, but at least there is some guarantee of coverage -- just not enough. Because of HIPPA I can seek another job and still have Trish covered with a new employer. That's an advantage, but I'd have t o leave a job I like to keep her covered -- this is the American way?! We should be ok insurance wise through her transplant, it's after that that I am worried, but we will line up all the right options to make it work and know that the right folks here at Hopkins will help us through it.
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Ok so, that wasn't much of a tirade, but why did I even bother posting that today? Last night at about 5pm as Trish was still groggy from the conscious sedation of he bone marrow, some bone-head from Hopkins admitting/finance dept called her room and asked her for payment of the co-pay and out of pocket expenses -- on the phone! She had them call me and the first thing the lady says is this is a collection call! She wanted me to rip out a credit card and pay. I told her I never heard of any such thing, last time we were invoiced and paid our bills within 10 days of receipt for everything we were responsible for. If they wanted a co-pay n advance I would need an invoice -- I wasn't about to give her my credit card number.

I later spoke to the Bone Marrow Transplant finance nurse and she apologized profusely. Apparently, they have a new VP of Admissions or something and this is their new policy. She and others have been working to stop them from calling oncology patients, but apparently it hasn't worked yet. Shortly After I spoke with this lady the Director of Nursing came by Trish's room to apologize.

Happy Day Zero Everybody!

Trish's chemo drugs have about another 45 minutes to go. She's feeling great - they say she may not start feeling lousy till tomorrow. So if you were holding back on calling her today, go ahead and give her a call. I am working from the hospital room until they do the bone marrow in about an hour or two and than I'll head into my office and work to let her rest. Dr. Griffiths stopped by this morning with a big bag of books for Trish. So for right now, she's got lots to read.

The chemo calendar is posted, so you can see on what days she will get the drugs. Her Mom will come up next Wednesday and I will likely fly home Thursday night and than drive up on March 16. That will help us save some money on the rental car. Thanks for all your support and the boys say thanks to all who have supported their participation in Relay for Life. I'll be adding and moving links in the left column often and as needed so be sure to review the left column after reading the latest posting. So far so good. Keep those thoughts, prayers and encouragement coming.

Here comes the Chemo

Look for a link on the left to the chemo calendar shortly. Trish will start chemo therapy tomorrow. She will do the clinical trial click here for more info:

http://www.clinicaltrials.gov/ct/search;jsessionid=A099D5156AED07E3764036BD5ABB4156?term=NCT00293410&submit=Search

Tomorrow (Thursday Feb 22) will be known as Day 0 (zero). Once posted check the chemo calendar for administration of the meds - probably a good idea to not call on med days and to try calling her on non-med days. Trish had a cat scan today and we spent time with the clinical trial nurse getting the scoop on the trial. Tomorrow should be a rough day as she will get chemo, a bone bone marrow biopsy and who knows what else.

Time to head back to Aunt Mary's house - I need to get a good night sleep tonight.

Chemo Decision Made

Wednesday morning is decision day. So last night Dr. Levis and Dr. Karp had their "discussion" over Trish. As Trish told me over the phone. Dr. Levis described his position as 60-40 (in favor of the normal treatment - HiDAC). Dr. Karp never wavered and was always at 100% in favor of the clinical trial for Trish. So the clinical trial is what we are doing. Trish signed the consent forms this morning (see the earlier post on the non-FLT-3 clinical trial for more info). This means that Trish will be an inpatient for 28-40 days. Bad for insurance, good for caregiving situation. The other treatment would have put us in opposite situation, better for insurance and worse for care giving as she would have been mostly an outpatient.

Last night Dr. Levis told us it would take another 2-2.5 months to clear the bone marrow transfer donor in prep for the transplant. So all of this should time out well.

Trish will undergo two extra bone marrow biopsies as a result of being on the trial and today she will get a CT scan. Look for another update this afernoon/evening without an email announcement.

Trish just called. Docs just came by on rounds. Since they gave her breakfast and she ate, they will wait till tomorrow to start, cause they need to sedate her for the bone marrow biopsy. So yet another delay...frustrating.

Tuesday night addendum

It's late I just got back to Aunt Mary's a little while a go and can't quite get to sleep yet, so here is some more info...Be sure to read the main Tuesday night post, below this one, if you haven't yet.

Trish is in Weinberg 5C -- last time she was in Weinberg 5A. We had hoped to get readmitted to 5A this time but it just didn't work out that way. 5A is kind of the MISC ward, where they take in anybody. 5C is the Leukemia ward, just Leukemics. 5D I believe are the hard tumor cancers and 5B is the bone marrow transplant ward. Trish will eventually be on 5B. After she was admitted tonight, I went over to see if any of our friends from 5A were on duty. On the way over I met Holly - Holly was one of the two nurses that helped Trish her second night in when she passed out last time. I than went over and saw Cat. Cat was the Scottish nurse who was the other one that helped Trish on that night. They both gave me big hugs and than said NO - you're not really back! Both of them droppped what they were doing and high tailed it over to 5C to see Trish -- that was great that they felt such an attachment to do that. Holly has two boys about the same age as ours and Cat would stay up talking to Trish all night when all of her patients had been tended to. These are truly special people up here.

When they checked Trish in they decided she had some sort of infection, but not sure quite what yet -- it's not a big deal, but they made me put on a gown, mask and gloves -- it made it very hot to be in her room. Usually this time of year (flu season) you just need to wear a mask.

Tomorrow morning I will head into the hospital hopefully in time for rounds and the decision on what chemo will be given, than I'll head into the Glen Burnie office to work and visit with Trish again tomorrow night. Look for the possibility of a mid-day posting tomorrow and an evening posting. Ok I am finally getting tired. Goodnight.

SHE'S IN....Now what?

OK, we are now in the hospital. Earlier today it looked like we would need to wait some more time before Trish would get admitted, so we went to Annapolis this morning to walk around, than to the Arundel Mills Mall (Baltimore's version of Sawgrass). We had lunch at our favorite Irish pub (www.jamesjoycepub.com). We were starting to head back to Aunt Mary's when we got the phone call to come in. So we are finally admitted. Look to the bar on the left for Trish's phone number and address. I am also going to provide her Aunt's address as Trish may be an inpatient for just about a week give or take than go to IPOP (Inpatient-Outpatient service)-- this makes her Aunt's address the safest to ship to if your cards, letters, etc are going to be a week out. The reason? Still tonight we don't know which chemo they will start tomorrow. They are still debating whether it is best to do the clinical trial or the "normal" round of chemo for Trish. If they do the clinical trial Trish will be an inpatient for about 30 days. If they do the "normal" stuff she may only be an inpatient for about a week. We had a really great -- and way to complicated discussion with Dr. Griffiths and Dr. Levis (and a few new fellows) tonight. Dr. Levis will argue with Dr. Karp tomorrow to see what it is we will do tomorrow. I actually like this approach, becuase I think they will reach the best possible decision. (Click on the Leukemia Links on the left for links to info on the doctors involved -- not a shabby crowd). So please keep tuned and expect a posting around 1pmish tomorrow with the results. Trish is busy tonight working on a project for her work. She'll get some blood tonight to boost her red count. And tomorrow we will start some type of chemo. Stay Tuned. In other news, the boys made it home from Boston and the Harvard debate safely. While neither came home with a debating award this time. Matt did make some money shooting pool. Guess that pool table on the back porch was a great investment. Feel free to give Trish a call tonight. My guess for tomorrow is that it may be best to call her between 9 and 11 in the morning or after 5pm depending on which chemo she gets and how she feels afterward. PLEASE use her room phone and not her cell number to help conserve minutes as she must use her cell phone for outbound calls.

The waiting is the hardest part

The waiting is the hardest part. Every day you see one more card. You take it on faith, you take it to the heart. The waiting is the hardest part.
...Tom Petty

So here we are back in the hotel, expecting to be admitted tomorrow, maybe. The Shift Coordinator (the person who calls you to admit) called us tonight and said they still don't have any beds available. They should know after rounds if they will have one. I'm running out of points and Trish is getting real frustrated so if they can't admit her we will likely head back to Aunt Mary's till they get a confirmed bed. Trish and I re-read the clinical trial description tonight (see earlier post if you want to read it) and we came up with some concerns and questions. You know last time I was scared, stressed all day, every day. This time I just want Trish to get the help she needs and get back to life -- because I know that is what she wants. This may end bad, this may end good -- but waiting for it to start is eating at both of us. Let's hope tomorrow starts the process and ends a least that portion of the waiting.

Relaxing Saturday

Saturday was relaxing. We slept in and had a great night sleep at Aunt Mary's. We went into Hopkins for a blood test, that was a quick painless visit (keep reading for results), than we met my college room mate Scott Rubens, his wife Mary and two twin girls Kaitlyn and Laurel at the National Aquarium in downtown Baltimore. This was a great day. It was fun roaming the aquarium with two excited wide eyed girls and great to hook up with an old friend. It helped take our minds off of why we are here. Of course, we received an email from Dr. Griffths while we were there and the news wasn't great -- while Trish's blood tests had been holding steady for a week, they had dipped again Saturday. Her white count is now under 1000 (920 to be exact). She needs to be very careful between now and Tuesday to insure that she doesn't catch anything that could delay her treatment. Speaking of treatment, she will begin upon admission on FAT/Shrove Tuesday....the interesting thing about this is that she should get put back into remission in about 40 days if everything goes well -- which means Easter. This gives us all a good tracking method of her progress -- I have to thank Aunt Mary for this analogy. I don't know, though, I could think of other penances I'd rather be doing for Lent.

Look for more later...in the meantime here are a few pictures from our Aquarium trip. Hey Mary how did you manage to stay out of the pictures?

Friday Update

Today was not too busy a day. We slept in this morning, had a leisurely breakfast in the Concierge Lounge and than off to Hopkins for an ecocardiogram. After the test we headed up to Aunt Mary's house in Havre de Grace. We'll stay at her house this weekend. Tomorrow morning Trish will go for blood tests and we'll meet one of my old college roommates (Scott Rubens) in downtown Baltimore for a visit. We plan on going to the aquarium, should be fun, Scott has two twin girls. Sunday, we are thinking about visiting in New York. As of right now, it looks like Trish will check into "Hotel Weinberg" on Tuesday. We'll check back into the Marriott downtown Monday night to be close by in case of bad weather. The boys are up at Harvard debating this weekend - Trish and I had planned a romantic weekend while they were there, but we are making the best of the time we have this weekend.

I'm not expecting to post anything new till Monday or Tuesday when she is admitted. ((At least I am hopeful the weekend is that uneventful)).

Thursday' s report and the plan right now

It was great for both of us to sleep in today. Trish had a 10:30a.m. appointment for bone marrow biopsy. The biopsy was done without a hitch, though Trish is breaking out in hives a lot. We were back at the hotel shortly after Noon and I am working in the lounge while she naps in the room.

So here is the plan at the moment.... They will review her biopsy, looking for something called FLT-3 -- if they find it, they have a great therapy for that, if they don't she'll enter another therapy that promises good results.For some more info on FLT3: http://www.hopkinskimmelcancercenter.org/clinicaltrials/protocol.cfm?pID=J0366

The non-FLT-3 Clinical trial that Trish may get can be found here:
http://www.clinicaltrials.gov/ct/search;jsessionid=A099D5156AED07E3764036BD5ABB4156?term=NCT00293410&submit=Search

Either way, they will hold off on admitting her until Monday. We will stop at the hospital on Saturday for a blood test, but that's just a safety check. We should get a call from the shift coordinator Sunday night or Monday asking us to report for admission. They will start an intense round of chemo next week that is supposed to last 40-60 days. If she is put into remission again -- and all indications are that she will be -- they will then complete preparations for the bone marrow transplant. They are scrutinizing 6 potential donors now in preparation -- these six folks matched Trish from the National Donor pool. For more info on Bone Marrow Transplantation, please follow the Leukemia Resources link on the left. The transplant and recovery period from the transplant can be another 100-150 days (this was the total hospitalization period of her first two chemo treatments). Trish needs your support more than ever now. She very matter of factly faced the demons last time with out and thought but that she would be coming back home. This time she is more scared. She will face the demons, no problem, but the alternative endings hover more in her mind this time. Statiscally, looking at the large group study numbers they don't make you all warm and fuzzy. We are taking things one day at a time, but your cards, letters, e-mail -- visits if you can -- will all mean so much more this time and will be needed even more. Trish and I are not very needy people in general; we don't like being dependent on others or accepting help, we'd rather give it. The roll of being in need is very new to us, mostly we just need your love and friendship to help us through this. We know we can count on all of you.

An administrative note: I did create a Google Group to use as a mass email device to let you know when there is significant news. I will send a message using this system after this posting. If you got an email and want to get them do nothing. If you don't get an email and would like to get one, send me your email address at chip@dicomo.net. If you got one and would rather not get one or would like to change the address let me know that as well and we will correct.

What a day..and it was pretty unproductive

What a day...let's start with the weather... The storm that was supposed to delay our arrival yesterday was worse over night. Dr. Griffiths emailed us to see if we wanted to stay put and postpone the appointments. We didn't postpone, but the short icy road trip from our hotel to the hospital was very interesting. You'll be happy to know that I kept the car on the road and we arrived on time, but the 2 mile or less trip took about a half hour.

Schools were closed, businesses too. But we made it just fine.

First up registration and parking stickers, than blood labs, than a PICC. The PICC ended up being a very interesting part of our day. Trish's blood still showed the blasts confirming her relapse is real. The rest of her counts seem to be holding steady, which is a good sign. On to the PICC.

The PICC is another form of central line -- last time Trish had the Hickman central line which is inserted through a surgical procedure in her chest. The P in PICC stands for peripheral, in this case it means that it is inserted into the arm and threaded blindly through her blood vessel to just above her heart. Sounds simple doesn't it.... Well this procedure took all day.

The first step is to find a good vein using ultra sound. Jane, our nurse who did the procedure, couldn't find a good vein in her non-writing arm (left). She than found a vein in her right arm that would work. The only sedation is some lidicane at the insertion point. An IV needle goes in first, than the catheter is threaded up a guide wire. The first try left Trish feeling a weird sensation in her neck. After they insert the catheter, they make you get up and walk across the hospital to take an X-Ray to see if they got it right. Well indeed they inserted it ino her neck. So the had to pull it out and try again. Second try, one more X-Ray, it was near the heart but it went slightly past the heart and pointed up. Pointing up is bad, because if they inject an air bubble it will travel to the brain and that's bad. Try three, this time they try to reposition it without removing it. They pull back on the catheter and send us for another X-Ray. We wait for the results.

While we are waiting Jane checked in with Makaela up on 5A. She is the nurse in charge of training other nurses and was the one who explained to my Dad and I all about Trish's M5 diagnosis and what that meant back in October 2005 when Trish was first admitted. When Jane told Mikaela and the other nurses who her patient was, there was excitement and saddness. They were sad Trish was back, we acually visited them in November and they were so happy she was still in remission than. After we were done waiting for the third X-Ray - we went up to visit the gang on 5A and it was a happy homecoming despite the reasons. They are already plotting to try and move one of their current patients to make room for Trish in their nest.

So, the third X-Ray showed the proper placement of the PICC. Trish's arm is very sore tonight from all the activity, but we were done. This was at 3 or 4pm, so you might be wondering what happened with the bone marrow biopsy that was scheduled for today? It is now scheduled for tomorrow at 10:30a.m. It wasn' just the extended PICC Party that delayed this test, but the fact that the pathology lab was shut down due to the weather today.

So tomorrow we will get the bone marrow done and potentially, but not yet confirmed, she may be admitted tomorrow.

Some other items of note from the day: Trish and I spent some quality time with Dr. Griffiths.... Probably the happiest thing we got from her today was a dinner recommendation. For a total of $23 Trish had a great bowl of potato soup and I had the BEST corned beef and cabbage ever at the James Joyce Pub, just a block from our hotel. By far this meal beat the Flemings steak dinner that cost 4X as much.

Some of the other things we discussed included length of stay, next steps and what happens along the way. But I think I might save some of these uglier details for another posting.

Some good news is that we spoke with our insurance transplant case manager today and she thinks that the negotiated fixed price for a bone marrow transplant (BMT) is less than we were told it would cost. This is important because we are already nearly at the halfway point of our total lifetime maximum for insurance benefits. When we hit that limit -- we are uninsured. That's the scary thought that occupied most of my brain cells since last Friday. After getting this news today, I'll only spend 10% per day worrying about this. We should at least make it through the transplant with benefits.

Trish and I went walking in the cold tonight to get some audio books and we took some pictures, and some pictures from the drive this morning. I'll post the pictures here now and go on to work-work. Check in tomorrow for an update on whether she's been admitted or not.

We're Back...

We had a pretty good flight considering the weather and got to the hotel without a problem. There was some turbulenece on the flight but not nearly as much as I had expected. The weather here is bad - wet - cold - snow - ice....I'm glad I missed this last year. Speaking of which, if you were wondering -- Trish was in remission for just over a year, but was home for just under a year. She came home on Feb 28 last year from her first set of chemo. We're going to Fleming's Steak House tonight for our own Valentine's dinner. Too bad the flower's I ordered will be delivered to our house tomorrow. Remember Trish won't be allowed to have live flowers in the hospital once she is admitted. We start the day early tomorrow and it will be a long day. Thanks already to all of you who have responded in support of us. I can't emphasize how important your cards, letters, e-mails will be once treatment starts. Trish had the fullest bulletin board last time, I'm hoping we can keep her room the cheeriest on the 5th floor this time too!

Time for dinner, it's just a short walk next door. Look for another posting tomorrow after all the appointments. It is likely to be a late posting.

As ready as we'll ever be...

It's just about Midnight on Monday night. Trish is sleeping or at least trying. I'm just finishing some last minute preparations. We fly back to Baltimore tomorrow. Our best laid plans to allow Trish to see the boys play in two Lacrosse games before heading up to Maryland fell apart. She spent Saturday's game in the ER being hydrated and tonight's game was called due to the bad rain all day today.

Tomorrow as we fly in Baltimore and DC are supposed to be having a bad winter storm - snow, sleet, ice and us. If our plane and can take off and land on time we should be there by 2:30 p.m. We'll check into a hotel and relax. Wednesday will be busy with appointments. This morning Trish went for a blood test -- her levels appear to be holding stable for now and than when into work for a while. Her work is pretty amazing as usual and offering all sorts of support.

Just a note about emails. I wasn't planning to send any, but due to popular request, I'll send out a notice when there is a major posting and figure out a way for you to join a mailing list. In the meantime, please check this page once a day for an update.

If you'd like to make a small contribution to the American Cancer Society - both Andy and Matt are participating in the Relay for Life at school this year. Links to their contribution page are on the left. (This won't go to us or Trish and is a tax deductible donation to the cancer society). If you'd like to wear the Orange Leukemia wrist band to show your support for Trish, their is a link for that on the Leukemia Links page (again won't help Trish financially, but a visible way you can show your support).

For me there is less apprehension this time, less that is completely unknown. There is fear and pain and uncertainty. But like my beautiful bride, I am ready to face this mountain and help her climb it successfully.

And so it begins again....

Trish has had a great year. We're all just really finally hitting our stride as a family again, than the next new wrinkle in all our lives.

Trish's white blood count has been dropping each month for a handful of months, but no other indications of problems have been seen, until today. Dr. Fu had started to take blood every other week to keep a better eye on Trish. When the blood looked low this week Dr. Fu scheduled a bone marrow biopsy for today.

After getting sedated by the nurse, Dr. Fu came in and said unfortunately we really didn't need to do the biopsy. There were blasts in Trish's blood. Blasts are the bad cells that don't fully develop into good blood cells. The blasts were at 9% -- when she was diagnosed the first time - the blast count was much greater.

We immediately got our friends from Johns Hopkins on the phone. They initially wanted Trish to report for treatment on Monday, but agreed that Tuesday/Wednesday would be ok if her blood level held during a test on Monday. This is significant because the boy have their first two Lacrosse games on Saturday and Monday. She should now be able to see these before leaving. So, she'll get blood levels drawn on Monday, than go to work.

If there is no change we'll fly to Baltimore on Tuesday. Wednesday morning Trish will get blood drawn, have a PICC placed (a different line than the Hickman she had last time) and have a bone marrow biopsy. It will be a very busy day.

She will be admitted as an inpatient either Wednesday or Thursday (Happy Valentines Day) and she will begin chemo before Friday for sure. This chemo will prep her for a bone marrow transplant. We'll learn more next week. Watch this space. Please start those prayers, which may have been forgotten during the healthy times. Thanks.