We're Back!

Friday, felt like we were checking in for a boxing match, not a bone marrow transplant.... We walked in feeling good. It was obvious Trish was refreshed and ready, though not thrilled to be back.

We walked into IPOP and it seemed that they weren't sure where to start, but Trish did get some quality attention. Two of the most senior IPOP level nurses were attending to her. They weighed her, measured her and made us sit for a while. They didn't want to draw blood until the consent forms were signed -- which seemed very silly to us. Than they went ahead and drew 15 tubes of blood. I think they are so used to drawing the blood via a central line, that one nurse didn't feel comfortable sticking Trish with a needle. But draw the 15 tubes they did.

Than we waited for the doctor to come up and do consent forms with us. While we were waiting Annie walked past the IPOP and saw us. She came in to give us an update on what had transpired while we were home. Her husband, Joe, didn't get the radiation treatment they thought they would use on him right before we left for Florida. They decided on a powerful round of Chemo -- usually reserved for first time AML folks (Trish had much of what he is getting now, back in Oct 2005). They think this will get him ready for transplant. Annie is hoping that they will get to transplant by the first of August -- that should be about the time that they may discharge Trish.

The doctor showed up as we were finishing our talk with Annie. Trish, her sister and I headed into the conference room to review the consent forms -- We had received them about two months ago so there wasn't much new. Trish really didn't want to read all the ..."this can be fatal..." on every page. So we asked a few key questions and started signing.

The worse week is usually week 3. This is bad because Trish's immune system will be dead for about two weeks and the new immune system won't start doing it's thing for at least another week. The biggest problem that could arise is graft vs host disease -- this is expected, but can get really bad (and you guessed it, may be fatal). The other big fear is that the "graft" won't take at all.

For now, we are just focused on getting a Hickman placed on July 3 and starting chemo on July 4th. Trish's sister's family was up here this week and we spent some quality time with them for two days before they headed home. Trish and I ended the day by seeing the new Bruce Willis movie -- Live Free or Die Hard. It's a great addition to the series.

Family and friends are gearing up for the Dinner/Dance on July 28th. Some great prizes have been lined up for a raffle/silent auction and include autographed Miami Dolphin Memorabilia (Zach Thomas and Channing Crowder), Marlins Batting Practice tickets and more. See the info below to order tickets for the dinner dance.

A nice visit, but now on with the show.....

Well, as expected, our return home was way too short. We had a good time. Hanging out with the boys. Visiting. Working. Reconnecting.

Andy is working on college essays. Matt is being a slug...enjoying his time off from school. Both of them have enjoyed having us home and especially spoending time with Mom.

They will come up to Baltimore in a week -- after chemo starts -- they'll have some time to visit before going to the Johns Hopkins Lacrosse camp. They get out of camp either on the day after or the day of the actual transplant. Than they will spend a few days visiting before going home.

Keep the prayers and good cheer coming. This is it. The roller coaster car has climbed to the top of the biggest climb and is poised precariously at the top, simply waiting for gravity to pull us down the hill, through the tunnel and out the other side. Here's hoping we end up with the right two-thirds and the ride smoothly slows to a stop. We get off. And join the rest of the world again.

Two weeks or Two Minutes

Our time at home is dwindling fast....We leave Thursday and do consents on Friday. We did get a good phone call yesterday, Cigna has approved Trish for transplant. I don't know what we would have done if they hadn't -- she's clearly in remission and the doctors see no other option but to proceed. So at least for now the insurance is in sync. At some point in the next few weeks we will lose it. Only thing is that since the hospital bills all at once after the stay we won't really be able to prepare for losing the insurance until it is gone.

Anyway, we hope to enjoy our last few days/hours at home before returning to Baltimore. Thanks to everyone for their support and to those of you who have been checking the web site with not much to read over the last two weeks - thank you too and get ready for more daily posts starting Friday. Trish will get a Hickman placed next Tuesday and start her pre-transplant chemo on Wednesday. She will have her own private fireworks on the 4th of July.

Is the week over yet?

Despite the title it's been a good week. Most of my non-working time was spent trying to get a prescription for Trish this week. And I have to say that if you aren't happy with your pharmacy you should give Target a try. I have been quite impressed with their ability to get things done on hard to find, expensive and insurance intensive prescriptions. CVS on the other hand....those folks haven't got a clue on how to use their own computer system, follow directions and have severe customer service issues. I would have never thought to have tried Target except that in Maryland they are the closest to Aunt Mary's house. But even in Florida they saved the day -- after a week of CVS trying to complete the prescription -- Target was able to do so in less than 24 hours.

We saw Dr. Fu yesterday, Trish's local oncologist/hematologist. She was so excited to see us. Trish's blood looks good too. I have updated the counts with these numbers. Today Trish has lunch plans with friends. Our time at home is moving way too fast and we are getting no so much done during this time. However, the greatest feeling is when Trish says I feel so much better at home. It's not that Aunt Mary isn't a gracious host and her house which is surrounded by land that should be a national park is a very restful recuperative setting -- but home is home and it has had a wonderful effect on Trish's healing.

Hopkins submitted all the paperwork to the insurance company yesterday and I'm guessing we should hear soon if they feel everything is in order. Our doctors certainly do. If I have a chance to post some info on the transplant process this weekend, I will. A lot of folks still don't understand the process. As Dr. Fu said yesterday, it is more the side effects of the process that are of concern than the process itself.

Please keep those prayers coming. Also the good cheer. This week would be a good week to email or call Trish. She has been responding to her own email this week. My apologies to all who have emailed and haven't gotten an individual response -- it is difficult keeping up with it, but please know that your messages are read and appreciated. As I have said many times it is the daily email that helps us get through each day, knowing that so many people are supporting us through this process. Thank you.

"Normal"

What is normal?

Trish relaxed at home on Monday. Tuesday she visited the KC Wright building where her sister works now and she used to work a few years back. She brought in baked goods and visited with all the folks who have been cheering her on, praying and helping in the fundraising efforts. Tomorrow she will visit the "Rock" -- her workplace (not to worry she is baking tonight -- Thanks to our neighbors, the Perez's for dinner tonight -- I don't think Trish would have been up to baking and dinner -- though she would have tried)

We got a late call today from the BMT case manager. She had just been contacted by the NMDP and the donor had his blood drawn today. We had an appointment to get Trish's blood drawn Thursday, because that's when the donor was scheduled originally. They both must have blood drawn on the same day for the pre-testing and I guess like Effie Barry and her Mom -- there is still a possibility that the donor and Trish could have issues to delay or prevent the transplant. Trish and her sister rushed over to Cleveland Clinic, got the blood drawn (all five tubes) and rushed to a DHL drop box that was inside to avoid great heat, dropping the package just before the 6pm pickup.

To satisfy the Cigna requirements for transplant, Trish had a dental appointment today. The docor found one cavity that she felt should get fixed before the transplant, so we'll do that on Thursday.

I have been in the office this week. It is weird and different. The last thing I did in February was pack up my office and move it to a new office. I have slowly started to unpack that new office this week. It feels good to sit at "my" desk, but it seems more sureal than normal.

My office move was just one of many that took place in February and March of this year. I was walking through the office Monday and ran into someone -- who didn't realize Trish had relapsed and I had been out of the office for about 5 months working from Baltimore. She thought that she just hadn't seen me in a while, because of our new seats in the office. I explained the whole story to her. She was going to check the web site to read up and keep posted going forward. The funny thing for me was the casualness with which I explained what Trish had been through, with what lies ahead. I was getting dizzy thinking about what I was saying -- with how "normal" it was for me to spit out medical details, discuss the statistics around transplant and the possible outcomes. It was freakishly "normal".

I am not so sure what is normal anymore. Each day is its own adventure, and we move forward one step at a time. Taking one breath at a time. Appreciate every moment. Appreciate every person. Treat everyone well.

Happy Father's Day and Trish Day

We are so happy to be home. Trish and I had family over today to celebrate Father's Day and Trish's recent successes. It was a simple affair, nothing fancy -- burgers and dogs -- Trish had wanted to do homemade buns, but gave in to her reduced energy levels. We did make fresh made burgers (real sirloin, no Bubba frozen burgers). Trish's Famous chocolate chip cookies, but the ice cream was store bought. We also made some home made lemonade (no crystal light here) -- but the jury is still out whether it was too tart or too sweet.

It was probably the first time we spent more time relaxing and talking to people than we spent in food prep. Tomorrow, I go into my office for the first time in 5 months. Trish is home. Tuesday and Thursday are doctors days this week.

Just found an article on the former wife of the former mayor of Washington D.C. -- Effie Barry (Marion Barry was the former mayor of DC), she will be getting a transplant over the same period as Trish -- a level of semi famous person.

At some point during the treatment, we expect to lose insurance benefits. Today we also got to meet one of the folks who is working to help us get through that expected hurdle. Earlier this week, the Golden Wolves hockey club held a fundraiser for us and anoher person with ALL. It is just so amazing the amount of folks coming out to help us. Of course, I am still stunned that we will need this kind of help.

Enjoy your week - we plan on enjoying ours.

Home Sweet Home

Trish and I were beside ourselves waiting at the airport last night to board our flight back to Florida. We knew it would be a bittersweet trip. We thought about the silly stuff -- like would we be able to find things after the kids an our parents had been in charge of the house for 5 months. We worried about the stuff we would have to do -- doctors appointments, work, fixing things that stopped working during the last 5 months.

Trish was worried about leaving home before we even arrived. She was not looking forward to saying goodbye again and knowing that she would be returning to great tortures for at least another 3-4 months -- all designed to possibly save her life. Than of course she turned her thoughts to what success might mean, seeing the boys grow up and more. She knows her only hope is to return to Hopkins and put her body through one last torture, but she is not looking forward to it at all.

An allogenic bone marrow transplant is the only possibility for an extended life, but it also kills about a third of the recipients.

Over the next almost two weeks, we will enjoy being "home". We will do our best to reset it to being our home again. Knowing that it will go through changes again once we leave as our parents chip in to keep things moving along for the boys.

Trish is excited, she will do lots of baking this week. She is looking forward to seeing lots of folks in a short period of time. Squeezing in two doctors appointments and just being home.

Even though we are home and moving forward in our battle against AML, we think often about those we are leaving behind this week. Joe and Annie are battling AML too. Joe has had an even harder time than Trish in getting a remission so he can move forward to a transplant. Annie and I talked often, how we would be on 5B together cheering on our spouses. We will be praying that the next two weeks will bring some good news for them and they will join us on 5B at some point during our 30 day stay. Michael, the 20 year old college student with ALL, when we saw his mother last she was very concerned. Michael was sleeping around the clock and the doctors weren't sure why. This was a new wrinkle in his struggle and he had been doing so well. He wants to be a math teacher. Having his dreams shattered has been tough on him. We will be saying lots of prayers for him over the next two weeks as well. These folks are all part of a very different sub culture we find ourselves living in. Remember one foot forward at a time.

God Bless and thank you.

The good news express....

I was worried we hadn't heard from Dr. Griffiths about the biopsy results and e-mailed her this morning between tests.....Her response is posted here in its entirety:

Dear Chip,

I think a copy of the report is worth a thousand words:

DICOMO,PATRICIA E SP# 643JHH MR # 94-83 LOC: 379
SPECIMEN TAKEN: 06/08/2007
-------------------------------------------------------------------------------FINAL DIAGNOSIS ----------- Pathologist: CHRISTOPHER D. GOCKE, M.D.1) BONE MARROW (BIOPSY): ADEQUATE BIOPSY WITH NOEVIDENCE OF LEUKEMIA. NOTE: The bone marrow biopsy consists large of cortical bone,hemorrhage and fibrin with very scant marrow elements. The accompanying aspirate shows an M:E ratio of approximately 2:1. All normal hematopoietic elements are present and show normal maturation.No dysplasia is noted. Megakaryocytes are identified in usual
numbers. There is no evidence of leukemia. Flow cytometry studies, reported in detail separately, show no phenotypic abnormality.

Enjoy your trip home and come back ready for the transplant. I am sure that I don't need to tell you that I'm overjoyed to be able to tell you this. We can only hope that things will continue to look this good!
Best,
Elizabeth Griffiths.

I e-mailed her back saying, it was worth a thousand words and a bucket full of tears.

We will go into the hospital tomorrow, just to have Trish's PICC line removed. We will head to the airport and back to Florida. Trish will get to be in Florida through the 28th of June. We'll do consents for the transplant on the 29th, she'll have a new central line (Hickmann) placed on July 1,2, or 3rd and pre-transplant chemo will start on July 4th. The actual transplant is slated to happen on July 10th. We're not out of the woods yet...still lots of not so good things that can happen along the way. BUT this is great news! News we had hoped to hear much earlier this year and are very greatful to be hearing it now and thankful for the prayers and support that we have received from so many people. People we know well and people we have never met. Your love and support help us get through each and every day. Thank you.

PLEASE NOTE: Do not, not call the house or think twice about visiting Trish while she is home. PLEASE DO call and visit. Trish will likely be tired and have to limit her activity, but she does want to see folks while she is back in Florida. I know she is planning on stopping by the ROCK (have a box of tissues handy).

See you soon.

Some more pictures taken by Kara

Some pictures and a brief update

I'm posting some pictures of us from the weekend. You'll get a pre-look a Trish's less than full head of hair. I am trying to get her to buy and wear a hat, she may wear the winter caps that she has, but she needs to wear something. She got a lovely tan on her head this weekend, but she can have too much sun post transplant -- it activates graft vs host disease and that wouldn't be good.

Today's Post is brought to you by the letter T

We had a great weekend visit with my brother, Phil, and his family. Yesterday, we gave them a tour of Havre de Grace -- eating Crabs and more at McGregors, ice cream at Bomboys, Aunt Mary's famous pancakes and more....Today, it was the inner harbor, downtown touring the USS Constellation and treating them to the world's best corned beef at the James Joyce Pub. Phil was in shock at how good the corned beef was. I have some picures, but I'll post them tomorrow after we are back at Aunt Mary's... We are staying n a hotel downtown tonight.

Trish did pretty well walking around this weekend. Sill healing, but doing well.

Now the sponsorship by the letter T message: You may have noticed that the letter T is missing from my posts on occasion. It's not because I'm lazy, tired or stupid. My laptop keyboard isn't quite working too well -- maybe an errant crust under the keyboard, but the T's I press often don't make it to the screen and I don't always catch them.

Monday's schedule for Trish includes a surgery follow-up visit, physical exam and TB test.

Friday Update

No complaints today...It was a good Friday indeed. Traffic was extremely light this morning on the way into the hospital. We showed up in radiology (famous for their long waits) and got right in and done in minutes. The annoyingly chatty nurse a hte PICC and Port blood station was out today and we flew through that wait fast as well. Dr. Griffiths stopped by and we had all of our questions answered before the biopsy in a very casual and leisurely manner and she agreed to do the biopsy early today, so we would finish faster. It was just a great day all around.

Tonight my brother and his family come in for a visit. After a few more days of tests we'll fly back to Florida too! I'll make some reservations this weekend, but looks like we will fly home either Thursday late or Friday.

Some more good news. The only doctors appointment scheduled for Trish while she is home is a dental appointment - needed for the transplant eval by Cigna. Since they will put a Hickmann in for the transplant, they will remove her PICC line next Thursday after her last dose of IV antibiotic Wednesday night. And here's only one pill the docs want her to take while she is home. This is all good news!

Hopefully next week will go as well as today and we'll see a lot of you very soon.

Thursday Update

First round of tests are complete...It was a long day today. I woke up at 3am to help Aunt Mar take her friend to the train station. I didn't mind, really enjoyed visiting wih her friend and didn't want either of them waiting at the train station alone in the middle of the night. we than started Trish's IV early - about 6am, because we had to be at the hospital by 8:30am this morning. We knocked ou the MUGA scan, blood tests, chest x-ray and EKG today.

Tomorrow we knock out the CT Scans, more blood tests, bone marrow biopsy, spinal tap/lumbar puncture, and a basic physical exam.

Monday is a TB test (luckily Trish hasn't been on any planes with Atlanta attorneys lately), surgery follow-up.

Wednesday is a TB test reading and Pulmonary function tests (not a lot of fun) and we should know the results of the bone marrow biopsy by Wednesday too.

If everything goes well, we expect that we can fly home as early as next Thursday and be home through June 27 or 28th. Trish will need to be back in Baltimore to do the consents on June 29. She'll have her PICC plucked out and a Hickmann Catheter put in on July 1st or 2nd. Her admission and pre-transplant chemo would start on the 4th of July. I'm sure she will be seeing fireworks once the chemo starts.

And how is she feeling? She still has a lot of pain from the surgery but it is getting better. Mostly it just hurts out of nowhere and brefly, but judging from her face, it really hurts.

Keep the prayers pouring in, we are not out of the woods yet. God Bless and thank you for all your support and help. We could not survive this without you!

The DATE HAS BEEN SET....

I sent an email to the Bone Marrow Case Manager today, because I was concerned that Trish would have to do all these pre-eval tests a seocnd time if the donor picked a date at the end of the window....That's the last thing we would have needed -- both for wear and tear on Trish and helping deplete our insurance.....

Anyway, after complimenting me for thinking ahead and offering me a job because I paid good attention to detail.....She sent me another quick email...She just heard from the NMDP and -- drum roll please -- we have a date!

Trish's new best friend - the donor who we won't know for at least a year -- will have his marrow harvested on July 10 -- this means that Trish's transplant will occur on July 10 or 11th. It also means that she will be admitted for prep and chemo on July 4th.

I am praying and crying and typing and can't wait to drive back to Aunt Mary's to hug Trish (I'm working at our Baltimore office today). Trish may get almost two weeks home after the tests are done. This is exciting stuff folks.....Thank each and everyone of you for your prayers, support (moral and financial), and the good cheer that will be needed to get Trish through the days ahead.

Tuesday and the marrow is producing!

We had a truly quick doctor visit today. And Trish's blood is doig GREAT! In fact so great that her marrow is producing it's own platlets and red cells -- the two types of cells that take the longest to come back....

Trish will be starting her testing for the transplant this Thursday and of course Friday is the bone marrow biopsy and lumbar puncture. They'll be a few more days of testing next week and than Trish should get a week or two back inFlorida before the transplant. We still don't know the date the donor will be harvested, so no firm transplant date yet. Keep those prayers and emails coming. Hopefully Trish will get to see some of you in the last two weeks of June!

Sunday Update

WOW - The IV antibiotic is definetly better on Trish than the pills. We had a nausea free weekend. Even better than that, Trish was feeling good enough to cook up a gourmet meal Sunday night. It was great.

She has appointments Tuesday and Friday this week. So it should be a good week of rest for her and work for me. Trish's Mom, Aunt Mary and I were feeding Trish at every turn. When we were at the hospital on Thursday she weighed only 93 pounds. Hopefully by Tuesday, she'll be back up at 100+.

She has been in a lo less pain his weekend and hopefully things will be good going forward.

Friday Update

The early euphoria of this week has subsided. Trish started a new super duper antibiotic last night (~$100/pill). This was because the infection she had is resistant to the super antibiotics they had been using. The super-duper stuff gave Trish severe nausea and after taking her first dose last night, it was a non-stop getting sick parade. To top it all off we had no anti-nausea medicine at home and Trish wasn't taking her pain meds, because of its side effects.

When we got to the hospital this morning, they immediately gave Trish fluids and anti-nausea meds. After they took effect we gave Trish her first morning dose of the antibiotic and she still got sick....So the nurse called home health care to see if we could get the IV version at home. She was successful, so tonight we will start the super-duper antibiotic via IV twice a day. Trish did receive it by IV in the hospital so we expect it to be fine.

Trish will get a second bone marrow biopsy next Friday. Please keep your knees bent and fingers crossed that it is even better than the first one taken last Friday. There was some discrepancy in the reading of the last biopsy and we need this one to be good to proceed.

Trish will hopefully start eating and feeling better over the weekend.