Morgan Family

Drew has some New Pink Gear

2008-04-12T14:05:00.004-05:00

Well something not so fun in the Morgan household. Drew accidentally slipped off our bed and somehow landed on her arm. Her radius and humerus have 2 small breaks, called buckle breaks. So if you see our little girl in the next 3-6 weeks, she will have a cute pink cast on. She is doing fine, and once she was in the cast, it doesn't seem to bother her at all. Maybe sometime I will put some good news on this blog.

2008-01-08T21:43:00.000-06:00

Not too much new with Chris which is why I haven't posted. He is still getting dialysis 3 times per week but is also making some of his own urine which is a good sign. They are watching lab values now and sometimes will skip a day (although they usually have to dialyse him the next day) to see how he does. He still has trouble with his catheter clotting but I am sure they want to see how long he is going to need this before they put in a new one.

He has had two swallow evaluations and failed the first one but passed the second one for being able to swallow soft foods (maybe pureed - didn't get specifics from Teri). However, after 24 hours of eating his cough has worsened considerably and Teri is worried that he may have aspirated (gotten food into his lungs) so they have stopped feeding him again.

He has a pretty big bed sore on his bum which can happen when you don't get out of bed much and you don't have good tissue because of all the chronic medical problems and the drugs. So, he is holding steady - no really good news or bad news which is a pretty good thing all things considered.

Update

2007-12-27T20:51:00.000-06:00

Hope everyone had a very Merry Christmas. We celebrated Drew's birthday on Sunday - she seemed to enjoy her party and put on quite a messy show while eating her birthday cupcake. I'll post pictures sometime.

Chris is continuing to improve little by little. He did briefly go into atrial fibrillation on Christmas Day and when he dropped his blood pressure they had to cardiovert him (which means shock his heart back into normal sinus rhythm). Atrial fibrillation is a very common heart arrythmia and could have been caused by electrolyte abnormalities or his pneumonia. They have him on a drug called amiodarone to control the rhythm now. He has had trouble getting his dialysis because his catheter is clotted - they had to skip it yesterday but put some meds in to bust up the clot. They got about 2 of the 3 hours of dialysis done today but had to stop because it clotted again. So, they will likely have to replace it.

That's all the news for now.

Christy

2007-12-21T17:43:00.000-06:00

Good news - Chris was extubated last night and has been doing well all day. He underwent dialysis again today and even sat up in bed and smiled at Teri afterwards. They will be checking labs on a daily basis to see if his kidneys are working again. We will keep you posted.

Christy

Update on Chris

2007-12-20T22:05:00.000-06:00

Teri asked me to post something to bring everyone up to speed on events in the last week. Chris had been hospitalized with pneumonia again and Tuesday night acutely deteriorated. He has gone into acute renal (kidney) failure (he probably has some component of chronic renal insufficiency because frequently when he is sick his kidney markers have jumped up) and this acute worsening is likely due to his infection (this is Christy's comment completely). This caused his organic acid levels in his bloodstream (as well as potassium and other waste products) to increase. The only other way your body has as a means to get rid of acid is to breathe it out in the form of carbon dioxide. If your lungs aren't too happy to begin with and you throw this extra work their way, you tend to tire out which is what happened in the early morning hours of Wednesday. So, he was transferred to the ICU, intubated, and sedated to help blow off the excess CO2. That worked well and they made preparations for hemodialysis (to compensate for the kidney failure). They still have no idea what is causing the pneumonia but are treating for nasty things like fungus since he is a transplant patient with a severely weakened immune system. He tolerated his first round of dialysis and has continued to improve with his breathing so today they turned off his sedation and are going to try to extubate him soon. He will require dialysis until his kidney function returns (there are no guarantees that it will but we will hope for the best) and it is usually done 3 days per week (M,W,F or T, Th, S). So, he will get his next round of dialysis on Friday. We will try to continue updates this way so Teri doesn't have to field too many calls.

Christy

A Couple of picts

2007-09-25T08:23:00.000-05:00

Drew seeing how we look sideways

The 2 little ones getting ready to go on a walk with Mommy

Trevor on a tractor when we went apple picking

I will try and put some more up sooner.

-rm

Picture of Drew

2007-08-31T15:07:00.001-05:00

Well Drew is keeping us pretty busy. She is already crawling all over the place. 6 months ahead of Trevor. She pulls up to everything, and everything goes in her mouth. I just wanted to share a picture that I took of her, while in Florida.

--rm

Quick Pops update for anyone who still checks this...

2007-08-21T18:41:00.000-05:00

Had a great dinner with Dad and Terri Sunday night. Dad's walking better and steadier than ever, only needed the cane (just in case). Now Pops is dealing with more silliness... below is the quick update I sent to the immediate fam re: update. I'll block out the telephone number since this is on the good ol' www just in case (can you tell we've been learning a lot about security) - call one of the Morgan crew to get numbers if you'd like...
Dad just got a room (no more in the corner of the Emergency room at Barnes). He said it's nice and had a great view of Clayton skyline and Forest Park etc.
His room # is 13##2 -Terri said something about it being the Queeny Towers and Room Telephone Number (TN) 314.362.#56#. Terri and Dad always say he loves visitors but when Ryan, T-bone, and I visited last night he was very glad to see us but pretty tired.
Tonight he's a little too tired for visitors but likely tomorrow.
Terri's getting contradictory information whether he has a blood clot in his lung or not. She asked if it was a blood clot if it was life threatening and they said no. But I guess they don't know what it is so....we'll wait and see.
Just wanted to pass along the update.

New house

2007-03-06T16:16:00.000-06:00

They just started puuting the siding on our new house. It actually isnt siding but a product called James Hardy board. It is basically cement board, which looks very similar to wood, but lasts forever, and you have to paint it much less frequently. Here are some pictures on it going up. We will have some parts of the house in "shingles" just for looks, but I think the colors look pretty good together.

I also had to fix the neighbors fence due to some damage from a tree on our roof. While I was working Trevor was watching me, they said he had to get something, I had no clue what it was. A couple minutes later he comes outside with his Oscar hammer and starts helping me out on the fence.

-rm

Drew at 2 months

2007-02-27T15:19:00.000-06:00

Drew at 2 months

Drew had her 2 month doctor appointment on Monday. She weighs 11 lb 12 1/2 oz (70%), is 23 inches long (70%) and head is 45%. She has officially moved into her 3-6 month wardrobe. By comparison, Trevor was 50th for weight and height and 40th for head. She got a ton of vaccines but handled it pretty well. She is still getting up once a night but it is around 4:00am so I am hoping she'll extend to 6:30 soon.

I will post some recent pictures and also some similar ones of Trevor for comparison. I think they are looking more alike every day.

Dog pile on daddy!

Drew in the bath

Trevor in the bath - what a lovely hairline!

Drew checking out the big duck.

Look at those little rolls on her thighs already!

Drew modeling the Stanford gear.

Look at Trevor's scrawny legs - in his defense he was only about 3 weeks old in this picture.

The drywall is up in the house so the look has changed dramatically. They are turning on the heat today and will start taping and mudding tomorrow or the next day.

Foxy Baby

2007-02-13T13:31:00.000-06:00

Loved this outfit when Trevor wore it and I still love it. Drew is 7 weeks old in this picture and is chilling in the teeny rocking chair that goes with her new room decor. She is spending more awake time now and fitting into a pretty good three hour schedule (eat, awake, sleep). At night she generally sleeps from 9:30/10:00 to 2:00 or 3:00 and then until 6:30/7:30 and then goes back to bed until the next feeding at 9:00

A fair amount of stuff has happened since I last blogged. On January 29, we finally got the much-anticipated, long ago ordered furniture for Trevor's room. Ryan and I set to putting the crib together after dinner and, needless to say, Trevor got to bed pretty late that night because we kept messing up the steps and doing things wrong - how frustrating. Here are some pics of the work in progress (Trevor was doing his best to help which was quite distracting) and the finished product.

Trevor is still filled with brotherly love for Drew and during his recent horrible cold (see how chapped his poor face is) we had to really work with him to get him to not kiss her in the face.

I went back to work on Saturday, February 3rd. My day was pretty easy but things got ridiculously busy as soon as Ryan brought the kids up for dinner. They had to wait around for an hour until I could rush back to feed Drew. Then I was up almost all night and Ryan had a rough night too. Not only did Drew get up but Trevor woke up too! That happened another night that I worked too. Poor daddy! Drew is doing well with the bottle but does seem to enjoy her evening meal when she comes to see mommy. We weighed her at work when she was 6 weeks old and she was already tipping the scales at 10lbs 1 oz. She had an appointment today for a kidney ultrasound because her beans looked big on her prenatal ultrasound just like her brother. If they still look big, I think we just repeat an ultrasound at 6 months unless she gets a urinary tract infection or something.

Trevor is really starting to get an imagination. Twice this week he has played some sort of doctor game with this big yellow duckie. He lays the duckie on its side in the bathroom and I can't remember what words he uses but you get the distinct impression that it is sick or injured. He then runs back and forth from the playroom to fix it. First, he brings in the orange and purple thing (a toy that attaches to the highchair) and uses is sort of as a stethoscope. Then he brings his fireman bag and gets the ax out and hits the duck with it (I asked if this was hurting or helping the duck and he says it is helping). Then he pretends to pour water on it from his sippy cup and then rights the duck back up and declares that it is "fixed". We were cracking up, especially as he ran back and forth out of the room. Perhaps he is going to follow in his mother's footsteps.

The house is coming along well. We are about a week away from the drywall going up. This week they wired for the central vacuum and all the computer and sound stuff. We picked out our lights and fans. I think the only thing left is carpet and knobs and handles. We are also working to get our current house ready to put on the market.

That's it for now. It is time for me to feed Drew again...

1 Month Old

2007-01-25T20:26:00.000-06:00

I'm going to start posting some thngs on the blog because Ryan doesn't seem that motivated these days. It has been a busy couple of weeks with meetings for planning the house. We've finished the kitchen and bath design aspect for the most part. So many decisions.

On Monday the entire clan and Meghan took Chris and Terri out for Terri's birthday. We all ate

'til we were stuffed and had leftovers for lunch the next day.

Today Drew had her one month check-up with Dr. Liu. She is perfectly healthy and here are her stats:

Weight: 9 lbs 7 1/2 oz (50th%)

Length: 21 3/4" (75th%)

Head: 14 3/8" (30th%)

By comparison Trevor was only 8lbs 3 oz (20th%), 21 1/2 in (50th%) and head 14 1/2 in (25th%) at his one month check up. We are working on sleep training which is difficult since she is sleeping in the Pack n Play right by our bed. We have ordered new furniture for Trevor and Drew is going to get his furniture but it isn't in yet. She is doing pretty well though and usually only wakes up once in the middle of the night at 3 or 4 to eat. Sometimes she doesn't want to go back to sleep though and that is not fun.

Trevor is obsessed with his sister and constantly wants to hug and kiss her. He has a pretty bad cold right now so we are trying our best to make him keep his distance but it is a challenge. He and Ryan had their first of 8 "parent and me" soccer sessions today. He wasn't very interested in shooting the ball to the goal but loved dribbling up and down the field. I guess that means he'll be a mid-fielder when he grows up!

Like Jeff and Brenna, we're going to take a monthly picture in the same spot next to a reference stuffed animal to see how she grows.

This first post looks a little rough but I will get better as I go along.

Some pictures we had taken

2007-01-16T22:49:00.000-06:00

Sorry I have not posted this sooner but here is a link to some professional pictures we had taken of Drew and Trevor. I think they turned out great, especially the ones of Trevor. I hope you enjoy.

--rm

http://www.eyesmilesphotography.com/slideshows/slideshow.php?slideshow=Drew

Drew Kayla

2006-12-31T12:17:00.000-06:00

Well it took me a while, but here we go. Please welcome Drew Kayla to the Morgan family. Mother and baby are going great. Trevor loves being a new big brother.

-rm

Dad's Out & a New Morgan!

2006-12-28T09:56:00.000-06:00

Dad's Out...
Dad was released from the hospital with a few days to spare before Christmas. Dad and Terri were able to spend a few days with Terri's parents in Monet, MO for Christmas and back in time to visit with Jeff, Brenna, and Sydney who were in St. Louis for Christmas. Dad was glad to be out of the hospital to meet the newest addition to the family - Drew Kayla Morgan, Ryan and Christy's new addition born Dec 23rd at 7:29AM. She was 6 lbs 15oz. and 20 3/4 inches long. I'll let the proud papa share the pictures. She's beautiful!!!

Morgan Family

2006-12-20T15:59:00.000-06:00

Dad's hospital room change...now 314-747-5933

Quick update. Dad's room changed to 5933. He still has the view he likes of downtown Central West End but this way he is closer to the nurses' station. Forgot to include last night that Dad fell at the house (last week/weekend, something like that). As dad described, "took a header into the shower wall" he has a "bump" on his head and a LARGE bruise on his side. Nurse/PhD said he's never seen a bruise that bad. What's weird is Dad also just said he fell on the opposite side of where the bruise is. I don't know how that's possible, maybe sleeping on the other side and the blood draining? That's the first I've heard of it so haven't talked to Terri or nurse/doctor about it yet. Lung scan and cat scan came back clear. Terri said that they do not think it's pneumonia as Dad's been on anti-pneumonia medicine since leaving the hospital the last time so it's more unlikely that other R...thing. AGAIN...Dad likes phone calls and cards and all that fun stuff. No fun being in the hospital again for X-mas and Terri's still needing to sleep at home until she starts feeling a little better so give him a shout. I'm heading that way after work. I'll update again if anything big changed. Thoughts and prayers for pops...

12/19/06

2006-12-19T16:04:00.000-06:00

I just got off the phone with Terri. Terri let me know that Dad has been admitted to the hospital again. He's had a pretty bad cough for a week or so and the PhD/Nurse heard something different in his lungs this time so admitted him. They think he may have pneumonia. She said they don't know for sure but think it's either PCP pneumonia or RSV. They're doing a culture to try and determine what type he has. I'll share more news as I hear it but thought I'd get this on the blog for those who check it frequently. Terri was able to tell me that they think Dad will be out in about 3 days or so, and that all his other "numbers" look good. Terri has a pretty bad cold herself so will be sleeping at home to try and get better and at work during the day. I'm sure Dad would love phone calls during the day while Terri's at work. He is at Barnes again in St. Louis and his room telephone number is 314-747-5925.
As always thoughts and prayers are greatly appreciated. I'll update when I have more news.

The house on 12/13/2006

2006-12-13T14:59:00.000-06:00

Here is a picture from the back of the house

And from the corner looking straight on

The house 11/28/2006

2006-12-13T08:35:00.000-06:00

Sorry I said I would post, but I havent. Oh well, here is a picture of our house. The roof is on now and I will take more soon.

Waterproofing Foundation

2006-10-30T13:42:00.000-06:00

Here is a very short video of how they put gravel around the foundation. Get ready for more post to appear.

Back to the Hospital

2006-10-19T12:52:00.000-05:00

One week home is better than nothing. Chris was re-admitted to Barnes on Sunday Oct. 15th for some graft versus host disease (rejection) issues. Everyone gets some of these problems and usually has to be re-admitted. They warned us about this before he began the transplant. It is not considered a set back, just par for the course. So the course of treatment for gvhd begins. He is receiving steroids and was accepted into a clinical trial where he is also being given a T-cell
suppressor called MMF-standing for, I have no damned idea. They are trying to put his immune system to sleep for a while to keep his bone marrow (which is now Danny's) from trying to get rid of Chris' body. The meds will then be tapered off to see if the immune system and the body can "just get along." It will take at least 4 weeks before we know if the MMF is even working. Then the tapering will begin. If the tapering doesn't work, he may be on anti-rejection meds for a long time or forever. More later.

Terri

Home Is Where The Heart Is

2006-10-11T12:18:00.000-05:00

On Friday, October 6th, Chris was discharged from the hospital! He was doing so well, they kicked him out, telling him his room was needed for someone who is sick. He is very,very tired-but that is to be expected. We will be seeing his doctor once a week for a while. Next week he will have another bone marrow biopsy. The doctor said they will look to see how much of his bone marrow is actually his and how much is actually Danny's. I had no idea they would be able to tell the difference-especially since they are perfect HLA and blood type matches. The wonders of modern medicine. We have to stay in the St. Louis area for the next 100 days to keep my baby safe. He is AMAZING!!!!!

More later,

Terri

Transplant Update

2006-09-20T11:33:00.000-05:00

Chris was admitted to Barnes on Sat., Sept. 16th. He received chemo Sat. & Sun., and came through with flying colors. Mon. he received one radiation treatment which REALLY knocked him for a loop. About 2 hours after the radiation, he was as tired as I've ever seen him from any chemo. He did really well though. Yesterday (Tues. Sept. 19th) he received Danny's stem cells. First of all, we would like to send lots of love to Danny for going through this whole process, bone pain, headaches, sleeplessness and, of course, missing Daniel and Rachel. He was a smashing donor. The lab needed 2.5 million stems cells from him and he ended up donating 6 million. Chris got all the extra, they say it's icing on the cake. The transplant itself was a bit anti-climactic. After striving to get to the point where he was actually eligible for the transplant, agonizing about whether he wanted one, deciding he did, then having it denied by GHP (Group Health Plan- or as they're known in the medical field "God Help the People), the procedure took about 20 minutes. His nurse came in the room with what looked like a unit of blood (although thinner in consistency), hooked the bag to his port and 20 minutes later-it was finished. He had no allergic reaction since Danny and Chris are a 100% match AND the same blood type. Now the waiting begins. His white count should come up in 7 to 10 days-this would indicate that the stems cells found their way into his bones and are engrafting. He is able to have visitors and phone calls. Please continue to keep him in your prayers. He is such a wonderfully strong man, he's my hero.

Thank you Danny-we love you.

Terri

Transplant News GHP style

2006-09-10T18:23:00.001-05:00

The transplant scheduled for Tuesday has been pushed back to admission on Saturday thanks to the insurance company's refusal to accept the doctor's protocol. He has had to resubmit a different protocol that includes only one chemo but also a full body irradiation. This means I get my port on Friday and am admitted on Saturday. We have already contacted the news media about GHP making us jump through hoops just so they will approve the transplant. I am still scheduled to receive the stem-cells on the 19th as only the date of admission and the initial protocol have changed.

Transplant News

2006-08-24T10:50:00.000-05:00

The transplant is becoming more real. I'll be admitted to Wash U at Barnes on the 12, Danny is due the 15th and I start my transplant the 19th. I am cautiously excited but it's a good thing to finally have a genuine date.

505 Clay

2006-08-16T17:25:00.000-05:00

Not sure how many people knew, but we are building a new house about 2 blocks away from us. We just signed the paperwork today to get started, and they will probably break ground in a couple of weeks. It is fun to finally get things started. Here is a sketch of what the house will look like from the outside.

Here is Trevor with a bandana on from a recent doctor party we went to.

Enjoy

The transplant

2006-06-09T18:08:00.000-05:00

Many are wondering why a transplant at this time. The AML that I have is very aggresive, and although the Merk company does not have any history on SAHA because it is so new, the AML does have a history of recurrence, and once I'm out of remission it would be too late for a transplant. Besides, I have been working to this goal for some time, thus the search world-wide for a match.

So far Jimmy and Danny are the best matches and both have been tested. Now its up to Dr. Vij to determine the best match. This probably begs more questions than it answers, but sometime in early 0r late August I will be back at Barnes and one or the other will be a little sorer from the HGF shots they give prior to a marrow harvest, which is like giving plateletes; the blood goes out one arm, the stem cells are harvested out, and the remaining blood goes in the other arm. I will have chemo to take me to absolute zero in my own system while the stem cells are collected, and once at absolute zero I will probably lose all my hair again. Oh well, easy come easy go.

Chris

Answer some questions

2006-06-08T22:53:00.000-05:00

Well I might need to get Christy involved, but some people are wondering why do a bone marrow transplant. Here is my understanding. The cancer my dad "had" has a high recurrence rate. The doctors believe that if he relapses, they will not be able put him in remission again. SO... since he is in remission now, this is the time to do a bone marrow transplant. After a bone marrow transplant there is a much lower percentage of relapse, BUT......there are definitely some risks. I think I understand them, but the best thing to do is call Dad and talk to him about them. He would love to here from everyone. This might be happening very soon, as in less then 3 weeks, so if you want to know more, give someone a call.

By the way, Liz wins the prize for checking a blog that I havent updated in WAY to long. Thanks for the continued support Liz. Make sure you check out Jeff and Brenna's site. Sydney is super cute (almost as cute as Trevor) and they update it way more then I do mine. http://jeffamorgan.blogspot.com

2006-06-07T19:50:00.000-05:00

A couple at Grants Farm, with the baby goats

Trevor is reading a card that his cousin Sydney sent him.

In the bath, with the duck.

Trevor getting ready to eat a block.

Trevor making dinner. You have to love his Tobin James Winery apron on.

Well Blogger is starting to have problems again, so I will post these now and I will try to get more up soon.

Some pictures finally

2006-06-07T19:41:00.000-05:00

Well maybe not, I thought I was going to upload some but blogger is having problems. So here is an update on Dad.

Barnes is looking to do a bone Marrow transplant with either Danny's or Jimmy's blood. They are both going through tests and then the hospital will decide on which to use. Once I hear more I will let you know.

Also once blogger is fixed there will be some pictures.

Update:

2006-03-27T11:01:00.000-06:00

Well it's been a few months since remission, and the oncologist says she would be hard pressed to look at my blood reports and ever tell I had leukemia. The only thing left to do is recover from the stroke, and that is coming along nicely.

Chris and Terri (and Peter too.)

Good News!!!!!!!!!!!!!!!

2005-10-30T13:02:00.000-06:00

Went to Houston this last week, and the numbers from the bone marrow biopsy put me in REMISSION!!!!!!!!!!!! This is what I've expected, but it was still a shock when the doctor told me. Terri and I are both still in shock (happy shock!). This past year has been a nightmare that will hopefully fade with time. Thanks for the prayers and good thoughts, keep them coming.

Chris and Terri (and Peter too, he helped)

Pretty Fun

2005-10-20T18:56:00.000-05:00

One of the fun little flash games. Try and carve the best pumpkin and send me the picture when you are done.

Click here

So Very Close!

2005-09-21T23:34:00.000-05:00

According to my last bone marrow biopsy, a real pain where you sit down, I had 2% blasts. The average person apparently has up to 5% so I am essentially cancer free. But, since it only takes one rogue cell to act up and it all starts again, it is a matter of time before I'm in total remission. That should give me time to leard to type at a faster rate and my speech to recover from the stroke that the medicines induced.

Keep the prayers and kind words coming; they're working.

Chris and Terri (and, of course Peter)

2005-09-12T15:10:00.000-05:00

Here is what Trevors is about to enjoy!

He starts out strong but becomes a mess very soon.

We had a great time on his birthday. I think he did as well even though he was only awake to see everyone for a couple of hours. I know everyone always says it, but I still can't believe have fast he is growing up.

-rm

Here are a couple new pictures

2005-08-24T10:11:00.000-05:00

Well Trevor starting walking with some assistance. He isnt very close to walking on his own but that is fine by me. He does enjoy walking with his push car.

Here Trevor is helping me out with some work I was doing around the house.

-rm

One of the funniest things I have seen

2005-08-19T14:45:00.000-05:00

Thanks to Jeff for passing this along

Click Here

And Click Here as Well

Can you find your house

2005-08-16T16:46:00.000-05:00

I ran across an amazing website that lets you zoom as far out as the entire world and zoom in as close as your house on your street. Here is our house marked from a screen shot, and you can click on the link below to see the actual program working. You can always start from scratch at www.flashearth.com

Here is a picture of our house marked

Here is the link to the actual page where you can zoom in and out.

Also these pictures were taken from satellite about 2 years ago, so don't run outside to try and see yourself on the web.
Hope this is cooler then the digg news :P

-rm

Digg News

2005-08-11T02:02:00.000-05:00

I have added a new section to the blog. It is called Digg news. These are news stories that real people found. Once they are found they are submitted to digg.com where other people can "digg" or say they think that story is important. If enough people digg a story is shows up on my site. So it is news that real people find important. Enjoy

-rm

EDIT

Christy just saw the digg list and said "Is this list just for computer dorks? There is nothing in there I would even click on." So who knows? I think it is cool. :P

So very very close

2005-08-05T09:36:00.000-05:00

Well it looks like Dad might have done it. I just got a call from him, and his results from the latest bone marrow biopsy has his blasts at 2%. Technically he is almost in remission. The only thing that needs to happen before he is totally in remission is his red and white blood cell counts need to come up. Once that happens, he is good to go. I will keep you updated.

-rm

Thought you guys need a couple pictures of Trevor

2005-07-13T11:54:00.000-05:00

Enjoy
Happy and a little serious

-rm

Check out a new blog site

2005-07-11T12:37:00.000-05:00

http://jeffamorgan.blogspot.com/

Yes it is Jeff and Brenna's. Some interesting news there.

--rm

Jim and the match issue

2005-07-10T00:31:00.000-05:00

Unfortunately, Jim has a couple of infectious disease issues which prohibit him from being a bone marrow donor. They wouldn't tell me any more than that. So hopefully, the SAHA (research drug) will put Chrissy in remission and he will be able to be his own donor-called an autologous transplant.

Terri

Family Announcement

2005-07-09T09:47:00.000-05:00

Please visit http://jeffamorgan.blogspot.com/ for some new & exciting news!

No pictures

2005-07-04T15:33:00.000-05:00

I know there are no pictures up, my internet router died on July 3rd at 9PM. Not many stores open at that time. The pictures should be available Tuesday afternoon.

Updates on Dad

2005-07-04T15:26:00.000-05:00

Well a couple day ago Dad was feeling some pain in side, and ended up heading to the hospital to check things out.... I had a whole story planned for you guys but lets just get to the good stuff.
It ended up being his gall bladder. They thought a stone was blocking things, but after going in to take the stone out surgically, they realized it was the gall bladder the was very large and causing the problems. So they took it out.

He had is gall bladder removed on July 1st, and is still in the hospital under observation. He spent 1 night in the ICU, but now is moved to a private room. Trevor and I have been up there a couple times, and each time he was doing great. He has a small fever today, but that is to be expected and not out of the ordinary at all. I will keep you updated with the latest.

--rm

It has been a long time

2005-06-24T19:37:00.000-05:00

Well I know I have slacked recently on the posts, but I promise to do a little better. We just got back from the Morgan Family Reunion and we all had a great time. Maggie did a great job or organizing it. The only problem I saw was the crabby lady that owned the place. Other then that it was great.

Here are some pictures of everyone.
I know why you dont send 3 photographers to take the same shots at a wedding. No one knows where to look as you can tell in the pictures.

-rm

We're moving, again

2005-05-08T15:11:00.000-05:00

It's semi-official, as far as that goes. Monday Terri's dad comes down, Tuesday we pack, and
Wednesday we head for St. Louis. After a 12 hour jaunt to Terri's folks place, we head to St. Louis and expect to be there Thursday afternoon or evening.

The doctor here said there is nothing I can't do in St. Louis that I'm not doing in Houston, and I return the middle of June for testing. (Bone marrow biopsy) After that it's every 6 weeks or so until they either find a donor or I go into remission with the SAHA.

So, it seems the re-union may be in St. Louis area afterall, and I'll be there.

Chris and Terri

Good News

2005-04-13T22:43:00.000-05:00

"All things being equal the doctors says I will be home in 1 month" says Dad. Well it is about time. :) That is awesome news. Basically the blasts are under control and until they find a match there is no reason to hang out down there. So this might have our reunion settled. I will keep you posted.

Poll for reunion

2005-04-10T10:34:00.000-05:00

Well I couldnt figure out how to move the poll to a better place but it should work out fine for us. Time to cast your vote. Look tot he right of this post and you should see a poll. Please only vote 1 time. Also email me directly if you want me to chancge it and put some other ideas up.

-rm

Game Day

2005-04-10T10:12:00.000-05:00

Well it is a great day to play some baseball. We are taking Trevor to his first Cardinal game. I hope he has as much fun as we will. You can see he is looking pretty stylish for the game :)

His belly alone might keep him from wearing this all season though. We need to get him on the treadmill or something.

-rm

Updates

2005-04-05T09:10:00.000-05:00

Well Dad had his bone marrow tested and it has 4% blasts. They still call that in remission since it is below 5% but they are not sure what steps come next.

Trevor is sitting up like a champ now and scaring mom because he is already wearing 9-12month old clothes and he just turned 7 months. I guess he is kind of big. Here are a couple picts of the little guys.

--rm

Gmail Invites

2005-04-03T13:36:00.000-05:00

If you want a Gmail account there is a site where you can get an invite for free. Before someone would need to send you an invite for you to get a Gmail account, but this is free and you can send a invite to yourself. Basically it is just like yahoo.com or hotmail.com except they give you 1Gigabyte of space. I would suggest anyone that uses your local ISP email to switch to a free one. That way if you change DSL companies you don't loose you email address.

http://isnoop.net/gmail/

Enjoy

Good News

2005-03-25T12:05:00.000-06:00

Two bits of good news to share with everyone. First of all, they think Chris just strained his back lifting a little doggie over a fence. That means the pain is musculoskeletal and will get better.

Secondly, his latest blood results show 0% blasts in the blood. This could mean that he is in his first complete remission!!! They will do a bone marrow biopsy to confirm that there aren't any blasts in the marrow as well. So, the next step for someone who doesn't have an HLA-matched stem cell donor is to undergo an autologous (meaning "self") stem cell transplant. I will include links to two sites that do a pretty good job of explaining the details. The protocol at MD Anderson may not be exactly the same as at these two sites, but they give pretty good general details. We will let you know when we learn more.

Christy

http://patient.cancerconsultants.com/stemcell_treatment.aspx?id=947

http://www.cancercenter.com/stem-cell/stem-cell-autologous.cfm

Update on Dad

2005-03-22T10:40:00.000-06:00

Well Dad just got his blood work back from last night and his blast count is at 2%. This is VERY good. It has never been below 6%.

He is still in the hospital because of his back. They did a MRI last night but they are still waiting on the results. More updates as I get them

By the way, Trevor's hair looks really red in the pictures. It really isn't that red, just looks that way. :) I know we don't have any red hair in the family.

--rm

Brushing his Teeth

2005-03-21T12:13:00.000-06:00

Here is another great time to show off our little boy. We started brushing his teeth (actually gums) every once in a while. Our dentist says that is can help the teeth come in straighter. Here are some picts of the fun times. He is getting pretty big and his hair is still out of control.

Here is Christy and our "little man cub". :)

--rm

Update

2005-03-20T20:20:00.000-06:00

First of all, wanted to let everyone know that Chris was hospitalized yesterday because of severe back pain. His pain is improved today and they aren't quite sure what is causing it but they think it might be a herniated disc. X-ray was normal and he will be getting an MRI probably on Monday.

As far as the SAHA is concerned, I'm not sure what everyone wants to know. It is chemotherapy like all of it is. This one supposedly targets tumor suppressor genes (I guess in cancerous cells) and increases their expression. Tumor suppressor genes are in all of us and usually work to prevent uncontrolled cell growth. Recent research has shown that these genes are often disabled in cancer and are prevented from being expressed (having the DNA read and the corresponding proteins made). So SAHA is one of a couple of drugs that works to reverse this.

The numbers look good. Now only if there was a stem cell donor...

Christy

Update 3/18/05

2005-03-18T19:19:00.000-06:00

The SAHA must be working, the following is my latest bone marrow biopsy;

Hemoglobin: 9.0
Hematocrit: 24.9
B.U.N. 21
Creatinin 1.5
Blast Percent 7.0
Neutrophil absolute count 1.05

The rest are available if you really want them, the fatigue is the only big issue now, with a
back ache a close second.

Chris and Terri

SAHA Update 3/11/05

2005-03-11T12:28:00.000-06:00

Well,
I was told one of the side-effects of this new chemo would be fatigue; they weren't kidding. Aside from being pretty much tired all the time, there are no appreciable side-effects.

I've been on this for a week now, the PA said she has a patient in his 6th go 'round with SAHA, so even if I'm not in remission at the end of this round, the protocol is simply repeated.

Other than that we're just dealing with the weather, it was so cold yesterday that Terri went swimming.

Dad and Terri

Update 2/28/05

2005-02-28T21:30:00.000-06:00

Besides having horrible weather, it's 60 and clear, I have good news and better news. The good news is that having seen the doctor, Ferrajoli, today, my counts are good, the bad numbers remain low and the good numbers remain high.

The better news is that I've been accepted in a phase I study today, sponsored by the company that produces the drug, it's:

Phase I Clinical Trial of Oral Suberoylanilide Hydromaxic Acid (SAHA) In Patients with Advanced Leukemias or Myelodysplastic Syndromes

Christy is already looking into trying to translate the Clinical Trial into English, I'm sure she will post a translation shortly.

I start the study Wednesday, depending on a bone marrow biopsy and a chest x-ray and ekg, both of which I have had here before with good results. The trial has a 20% chance of pushing me totally into remission. Considering Mylotarg had only a 10% chanceof success, and I had only a 2% chance of surviving my V.O.D., I"m pretty happy with the anticipated results.

We travelled to Terri's mom and dad the weekend of the 17th, and had a good time. I was able to drive 3 1/2 hours down and about 4 hours back. It was tricky at first but gave Terri a good break on the 11 1/2 hour drive.

I'll try to post more often, more as results become available.

Chris and Terri

A little too close

2005-02-28T16:16:00.000-06:00

The little boy came out in me as I watched with enjoyment as our neighborhood house was torn down in a matter of minutes. I was up working on my computer and looked over to see the whole house shaking so I put on my coat and watched. Here are a couple of pictures.

So at this point most houses have gone down, but this one wasn't going down so easy. Guess it is time to push the left wall in so it falls to the right, AWAY from our house.

Things were going so well, until the ENTIRE house came down. The roof slid off the top of the house, the backhoe driver had to get out of the way so the house doesn't come down on him.

As you can see that is our gas meter, and the house is about 6 inches from hitting it. That would not have been good.

I was nervous the whole time they were tearing it down, but the backhoe driver just about had to change his pants when the house came down so suddenly.

Now you can see the house it down. Nothing like 1 hour to tear a house down.

--RM

Our little guy

2005-02-28T12:16:00.000-06:00

Sorry had to wait until everyone got the real pictures. Not much to report, Dad is now in the paid apartment, which is much nicer. Good number are up and bad numbers are down. So far so good.

The low-down on partial match stem cell transplant

2005-02-20T17:14:00.000-06:00

Chris had mentioned something to Ryan on the phone last week about a kid that they met who was going to go to Israel to have a stem cell transplant (txp) from a partial match family member. The technique is called haploidentical stem cell txp and has been around for about 10 years. It was pioneered in Italy and there was a major European study that concluded in 2002. It is used in the US on children and adults in clinical trials at major cancer hospitals. From my searches online, it appears that Duke does them in adults and the Mayo Clinic is getting ready to start a large multi-center trial on adults as well. There are a bunch of inclusion criteria that I am not sure Chris would meet but it might be worth a shot. That way, I think almost any sibling could donate. I think Baylor College of Medicine has a trial going on too.

For more information on the procedure check out
www.haplo.org

For the information about the Mayo study check out
http://www.clinicaltrials.gov/ct/show/NCT00101140

We've moved

2005-02-15T06:42:00.000-06:00

Finally, we've moved back to Greenbriar, we're at
7777 Greenbriar Apt 1019
Houston, TX 77030
(713) 795-0339

It's nice to be in an apartment that makes you feel more at home, and having said this, we're off to Springfield, MO again to see Terri's parents. Should be a good weekend off and out of this cold weather, it's been down-right cold at 80 degrees.

The apartment is right off Braeswood or King, and the fog last night kept us from even seeing the University of Texas towers at night.

We lunched at Carabas last week and Nit Noi yesterday. Nice places!

Good numbers going up, bad numbers going down, I'll try to blog more often.

Dad and Terri

Trevor hits the bottle

2005-02-13T19:00:00.000-06:00

Well we are out in Florida with Christy's family. As you can see we are up to no good. Uncle Tom is making sure Trevor doesnt drink the whole bottle.

Free RingTones off your computer

2005-02-09T11:01:00.000-06:00

I just tried this and it worked great.

Go to www.smashthetones.com

If your phone can support MP3 files you are on the right site, if it can only support midi/polyphonic then click here.

Then you upload your mp3 or midi file to their site and sent it to your phone. Then you should get a text message that allows you to download the file and you are set.

Enjoy

-rm

Blue Cross Blue Shield lends a hand, thanks to Jeff

2005-02-05T15:46:00.000-06:00

Blue Cross is picking up the tab for bone marrow testing in KC. Click on the picture below to see the info.

Who is the cutest baby?

2005-02-01T13:11:00.000-06:00

What an easy question? We just had pictures done of Trevor yesterday and they came out pretty well. So the buzz has started about the family reunion. I dont know anything about it, but I will find something out. Stay posted.

Pictures back up

2005-01-18T16:27:00.001-06:00

Sorry, had a problem with one of my servers. Everything is functional now.

Cool Google Service

2005-01-16T13:02:00.000-06:00

Just saw this on TV and if you have a cell phone with SMS capabilities I think this is pretty cool. Yes it is free.

http;//sms.google.com

Basically you send a message to phone number GOOGL (46645)

and you can find local restaurants, find prices on the latest things by UPC code, look up definitions. A bunch of stuff. Check out the site for more info.

Enjoy.

1/13/05

2005-01-13T11:51:00.000-06:00

Surprised Chris and Terri with a visit to Houston last weekend. They and Trevor got reacqainted, we watched the Rams beat the Seahawks, and we went to the aquarium. It was a good time. All the kids will be going down to see them again the weekend of the 20th.

Chris did well while we were down there. He gets tired pretty easily and he has to concentrate when talking. On Monday he was to have another paracentesis (fluid removed from his tummy under ultrasound guidance) and he was to see his oncologist yesterday. Jeff and Ryan have sent their blood to be tested for donation. Apparently there are some Native American genes in the family (that Chris and Danny share but the rest of you didn't get) and that is what is making it so hard to find a donor. According to Terri, the docs down there are still interested in Danny if he can get treatment for the Hepatitis C and get his viral counts down low enough.

Trevor went to the doctor today. He is now weighing in at 14 lbs 15 1/4 oz (50th%) and is 25 1/2 in long (75th%). Just like all the Morgan boys he is going to be tall. We have been given the go ahead to start on some solids so we'll be starting rice cereal this week and see how it goes. He also got his second round of immunizations today so we're probably in for a rough couple of days.

We'll probably talk to Chris and Terri today and if anything new has happened, we'll let you know.

Christy

Good News

2005-01-05T22:11:00.000-06:00

Chris was discharged from the hospital today. His blast count in still down around 10%. They are going to let him recuperate for 2-3 weeks and then start him back on treatment (although they aren't sure what to treat him with next). So far, no one is a bone marrow match. I guess the 7-8 people that were a prelim match on the national registry turned out not to be a match when they did final typing. We'll let you know more as we find out.

Update

2004-12-30T13:36:00.000-06:00

Chris passed his swallow evaluation and is eating normal food. He has been moved out of the ICU and they expect him to make a full recovery from the stroke. That is all the new news.

Christy

The Latest

2004-12-27T16:55:00.000-06:00

I wanted to clarify/correct some of the information in Ryan's last post. All of this is based on the report from Meghan, not actually talking to the doctors. Chris had a small stroke and that is why he was moved to the ICU. A stroke is an injury to the brain caused by the disruption of blood flow. They can be either thrombotic (caused by a clot that disrupts the flow of blood to an area and starves it of oxygen) or hemorrhagic (caused by bleeding from tiny vessels which injures brain tissue). The bleeding is not actually in his neck but in his brain, probably at the base in the brainstem (or possibly the cerebellum) which is why everyone was talking about his neck. It has caused a problem with his speech (just in the mechanics of him talking, not his ability to understand or create speech) and possibly some problems with his ability to swallow. This most likely was due to problems with clotting related to his low platelet count. The heparin may have contributed although they took him off as soon as his platelet count dropped so it may have worn off by the time the stroke actually happened. This is just one of those things that can happen when you don't clot normally.

He did well overnight with no evidence that the bleeding worsened. They probably have him on medicines to keep his blood pressure under tight control (too high and he may bleed again, too low and the injured area of brain won't get enough blood flow to heal) and probably some steroids to reduce inflammation in the injured brain. That's really all you can do and then you wait for the brain to heal itself. They are not letting him eat anything until he is evaluated by a speech pathologist (they do a swallow eval to make sure he can swallow without aspirating material into his lungs). I think they did the same thing when he had his cerebellar injury in St. Louis. As far as recovery goes, each person is different but most people recover at least partially and many people experience a full recovery. Because of where the stroke is, there hasn't been any involvement in his movement (other than his ability to coordinate fine motor movement like pointing and grabbing objects) so it isn't the kind of stoke with paralysis on one side or anything. Meghan said his speech is better today so that is a good sign. Meghan also says that his other counts are continuing to improve (kidney function, liver function, the ascites or fluid in his belly is less and so on) so that is all good too.

We'll keep you posted if we become aware of anything else.

Christy

Update on Dad

2004-12-26T21:06:00.000-06:00

Well Meghan flew into see Dad today. I just got finished talking with her, and he has been moved to the ICU for the night. He complained of a headache so they did a cat scan and found bleeding in his neck. This can/is going to his brain. The last couple of days his speech has been slurred, so I am assuming some blood has gone to his brain. So what happens now? Well they watch him and make sure it doesn’t get worse. That is just about all they can do. It is most likely a small vein that is leaking and it will eventually clot on its own, it could just take some time. They have given him some platelets to help with the clotting as well. I will keep you posted as I hear it.

--RM

Update 12/21/04

2004-12-21T13:01:00.000-06:00

Quick update to kinda' sorta' explain things: I'm still in rooom G1281, may bd here another week or so.

Here's the problem. Mylotarg is not a standard course of treatment that does not involve splenatic injury. Heparin has been studied to determine the effficacy in V.O.D. (See Christy's notes for an excellent study on V.O.D.)It has been argued successfully that Heparin is NOT indicated in V.O.D. Having said this, I was placed on heparin to see if it were successful-it was. I was taken off heparin and worsensened. The procedure was repeated with similar results; I went on heparin and got better, went off and got worse.

The bad part of the experiment is that it has < 10% chance of success, and now the problem, I've outlived anyone else who has undergone this type of treatment. So here I sit, the subject of some of the most brilliant minds in the world dealing with luekemia, I've outlived all other subjects, and am the subject of several brain-storming sessions with no ideas where to go or what to do.

We've decideded to stay here over the holidays, simply because it is safer to be on this floor than just "out and about" trying to regulate the heparin drip based upon results of a vanacomycin trough.

Here we sit, I'm doing as we as can be expected. It is now official that Dan is the last person on earth a complete match for my bone marrow transport. The other possible matches don't, so they're out.

Cards are on their way, this whole thing is still scary, but I'm so grateful for each second, and every morning I awaken to to the flags flapping in the breeze, I remember just how lucky we are that there are people out there pulling for us.

Chris and Terri.

Almost Christmas

2004-12-20T20:53:00.000-06:00

Well a couple of things have happened recently. Trevor was recently baptized at Kirkwood United Methodist Church. Our church does a great job with baptism, it was a really good service. I talk with Dad just about every day. He is doing well. There are a fair amount of complications with his treatment, but he is beating just about everything his body has thrown at him.

Trevor is growing like a weed. It seems like he is learning something new just about everyday. I have gotten a few requests for pictures so check them out below.

-RM

Update on Chris' Condition

2004-12-13T11:33:00.000-06:00

I talked to Chris' doctor this morning so I could get a better understanding of what has been going on with him the last couple of weeks. I'll do my best to summarize what I found out for all of you. The bad news is that I think he has been sicker than any of us (or at least I) realized but the good news is that he seems to have stabilized for the moment.

After his fevers subsided in the hospital (the reason he was admitted) which was about 2 weeks after his myelotarg, they noticed that his liver enzymes has risen dramatically. This is the same thing that happened after the myelotarg in St. Louis as I think I mentioned before. There is an entity known as veno-occlusive disease (VOD) of the liver that is associated with myelotarg and also with bone marrow transplant and this is what he has. They did an ultrasound of his liver to diagnose this and this is when they coincidentally found the blood clot in his inferior vena cava. The treatment for both is heparin which keeps your blood from clotting. As we discussed before, this is not totally straightforward in Chris because he is already prone to bleeding because of the cancer. The clot in his vena cava has resolved but they still have him on heparin to treat the VOD. Also, he needs some sort of anticoagulation to prevent another blood clot but there is some question as to how long they will treat him with it because of the risk of bleeding.

So, let's talk about the liver for a few minutes. The liver is probably the most important organ in the human body. The heart is pretty important from a mechanical standpoint but the liver is responsible for many vital functions. First, it acts as a filter for chemicals and toxins. The blood from the intestines and spleen come together in the large portal vein that then empties into the liver. This vein splits up into tons of tiny veins that then basically go through little filtering chambers and the blood comes out the other side and the vessels come together to form the hepatic vein which empties into the vena cava. The liver is also responsible for all metabolism in the body (it metabolizes medications and all food and energy sources - breaks down fat to make sugar for your body to live off of, etc). It is also responsible for making clotting factors (so you don't bleed to death) and the proteins that are the building blocks of the body. VERY important organ.

So, what happened with Chris is that all those little veins in the liver got occluded or blocked which leads to a back up of blood throughout the system and increased pressure within the organ. That makes all the little cells in there mad and they get injured which is what causes the liver enzymes to go up (they release stuff when they are hurt). It also causes bile not to flow through the liver and that causes bilirubin to go up and sometimes for people to turn yellow or jaundiced. If the pressure gets bad enough, the system backs all the way up into the portal vein and causes elevated portal pressure (called portal hypertension). This is a common problem in people with liver failure and can cause several types of badness. First, you can think of veins as similar to garden hoses that are put together with a connector. Sometimes, if you turn the water on full blast, water will leak out where the connector is. Well, consider that each cell that makes up the wall of a vein is one garden hose and so there are millions of hoses and millions of connectors. When they are under increased pressure, they leak and that is why you get fluid in your belly or ascites which is what Chris has. So, having fluid in your belly is a sign that the portal system is under pressure. It also serves as a great swimming pool for bacteria. So, they will put Chris on special antibiotics to try to prevent him from getting an infection in the fluid in his belly. They drained a bunch of fluid off the other day to make him feel better but they will not continue to do that unless they have to because it just re-accumulates anyway and whenever they go in there with a needle they run the risk of giving him an infection. The way you treat it is with certain diurectics that make you pee a lot and medications to try to lower the pressure in the portal system. Chris seems to be responding to these medications. The other badness that can happen is that the vessels get all distended from the pressure and you actually get like varicose veins inside around your esophagus, stomach, and intestines. These vessels can start to bleed which would be very bad in someone who can't clot well.

So, to summarize, Chris has a very serious condition right now known as VOD. The reason the doctors quoted him some nasty percentages last week (which Ryan might have relayed to you) is that most people who get VOD progress pretty rapidly to liver failure. They are very pleased that he seems to have stabilized for the moment. There are still lots of risks with this new diagnosis (infection in the fluid, bleeding to death, progressing to liver failure). The good news is that his blast count in now 1% which is great. This particular doctor wasn't sure what the plan was regarding the cancer treatment but they are supposedly going to discuss that later today.

On a lighter note, Trevor was baptized yesterday. He did great - not a peep out of him while the water was put on his head and then he just smiled and looked at everyone as he was taken out among the congregation. I'll get Ryan to put up a picture or two in his cute little outfit.

Christy

PS - here is a link to a site that discusses VOD in a much more eloquent manner than I did:
http://www.merck.com/mmhe/sec10/ch138/ch138c.html

2004-12-09T21:58:00.000-06:00

Greetings;
Started a 66% Mylotarg Wednesday, normal results until Sunday with swelling of spleen and liver. Ultra-sound shows reversal of splenatic artery and vein functions with increased edema. Parocentesis was expected to remove 50ml "fluid" for ananlysis. We were able to remove just over 4L of juices. I may never look at Clamato Juice the same way again.
It's now Thursday, my liver has taken on a little more edema, but the counts are down, on the low side of what the doctor want. Hi suggesttion is that the "problem" will spontaneously reduce, so we're just enjoying the 80 degree weather and 21% humidity. Terri's mom, Joyce flew in so they've getting a few of the essestials needed for everyday living.
It seems I no longer have Mylotarg on my list of availables, but Dr. Ferrajeloli still has several testing options available.

More later as we know them, keep the thoughts coming our way.

Chris and Terri

Is Trevor Growing?

2004-12-09T13:32:00.000-06:00

Dad is supposed to be blogging right now with all the recent information he has gotten. I will check back in a couple hours to make sure he has posted something.

Sorry it has been so long between posts. All is well in the Morgan household. We are enjoying 55 degree weather, and getting ready for the holiday season.

Latest update

2004-12-03T22:26:00.000-06:00

Noticed that there haven't been many posts recently and don't know how informed everyone is. Chris went back in the hospital on Tuesday (I think) because of a fever. They started him on IV antibiotics and told him he had to stay until he had been without a fever for 24 hours. This is not unexpected since the chemo is making him neutropenic (low white blood cell count which is your immune system). Ryan talked to him again yesterday (Thursday) and apparently he has developed a blood clot (a DVT or deep venous thrombosis) which I believe is in his inferior vena cava (IVC)(the really large vein that returns all the blood from the lower portion of your body back to the right side of the heart). Cancer can make you prone to clots so this is not entirely unusual either. The tricky part is that he is also prone to bleeding (seems counter-intuitive I know) because the chemo is killing his platelets that are responsible for starting the body's clotting mechanism so they have to put him on anti-coagulant medicine (heparin) but not too much or there is serious risk of bleeding. Hopefully, his body will chew through the clot and it will be no big deal. The concern is if a large chunk of the clot were to break off, travel to his heart and then to his lungs where it would occlude small ( or large depending on the size of the chunk) vessels and cause problems with oxygen exchange. That is the danger of a DVT.

There was also some talk about elevated liver enzymes again which Ryan thought was related to the DVT but I think is probably related to the Myelotarg because he had elevated liver enzymes when he got it in St. Louis which is why they only gave him one round of it instead of two. Wow, that was a tremendously long sentence (my former English teachers would be having a cow). Also, for a DVT in the IVC to cause hepatic congestion and damage, it would have to be like completely obstructing the vessel and he would have bigger problems than just elevated liver enzymes.

As you can see, I've gotten most of my information second-hand from Ryan because I was at work yesterday but this is my best interpretation of what is going on. We will keep you posted when we hear more.

Ryan's better, I'm sicker, and Trevor is still doing fine. It seems he isn't just getting some of my antibodies from the breast milk, he is commandeering all of them!

Christy

11/26/2004

2004-11-27T16:35:00.000-06:00

I had my first blood tests since the initial Mylotarg. The numbers may not mean much except to Christy, Kathy and Ann, but here they are:

Blood Results 11/26/2003
Component
Actual Reading
Norman Range
Comments
White Blood Count
1.6 L K/UL
(4.0-11.0)
Chemo takes to 0
Red Blood Count
3.46 L M/UL
(4.5-6.0)
Chemo takes to 0
Hemoglobin
10.9 L G/UL
L
(14.0-18.0)
I started at 4
Hematocrit
31.0 L %
(40-54)
?
Mean Corpuscular Volume
90 FL
(82-98)
?
Mean Corpuscular HGB
31.5 H PG
(27.0)-31.0)
?
Mean Corpuscular HGB Concentrate
35.2 G D/L
(31.0-36.0)
?
Red Cell Distribution Width
18.7 H %
(12.0-15.5)
?
Platelet Count
39 L K/UL
(140-440)
Chemo takes to 0
Mean Platelet Volume
7.3 FL
(4.0-10.4)
Chemo takes to 0
Sodium Serum
141 MEQ/L
(135-147
?
Potassium Serum
3.7 MEQ/L
(3.5-5.0)
?
Chloride Serum
106 MEQ/L
(98-108)
?
Carbon Dioxide
28 MEQ/L
(24-30)
?
Albumin Serum
4.4 GM/DL
(3.5-4.7)
?
Calcium Serum
9.3 MG/DL
(8.4-10.2)
?
Phosphorus Serum
4.2 MG/DL
(2.5-4.5)
?
Magnesium Serum
1.9 MG/DL
(1.8-2.9)
?
Glucose Fasting
123 H MG/DL
(
(70-110)
I wasn't fasting
Blood Urea Nitrogen
20 MG/DL
(8-20)
Creatinine Serum
1.4 MG/DL
(0.8-1.5)
Kidney function / lower is better
Uric Acid Serum
6.5 MG/DL
(2.6-7.1)
?
Bilirubin Total
0.3 MG/DL
(0.0-1.0)
Liver function
Alkaline Phosphate
64 IU/L
(6.0-8
(38-1260
?
Total Protein
7.7 G/DL
(6.0-8.2)
?
Alanine Aminotransferase
<12. IU/L
(7-560)
?
Aspartate Aminotransferase
35 IU/L
(15-46)
?
Lactic Dehydrogenase
768 H IU/L
(313-618)
?

I can't make heads or tails of some of the components, but since Cancer is attacked at the DNA level, I think it's tested that far.

More blood work Monday, results as I get them . Chemo should take the blood components to zero, which puts me nuetropenic; no flowers, fresh fruits or veggies, etc. Got to learn to live off steak. (Poor Me!)

Chris and Terri

Happy Thanksgiving!

2004-11-25T20:07:00.000-06:00

It's been two days since I've received mylotarg and although I'm starting to feel tired a little more quickly, but am otherwise doing fine.

We enjoyed a community Thanksgiving dinner this afternoon, everyone in the complex was invited to sign up, and some 45 people all enjoyed turkey, ham, mashed pototatoes, sweet potatoes, green beens, corn, and all the other goodies for dinner. Called Ryan, he was having everone over, and called Jeff; he and Brenna went to her folks in Destin, Florida for the holidays and to help with a little of the ongoing cleanup. Jeff dodged 8 inches of snow in KC, Ryan wasn't so lucky, they got an inch of that 4 letter word today, all the while he was frying the birds for their dinner.

We're in the "free" apartment, our new address and phone is:
Chris and Terri Morgan
7219 Cecil
Apt. 28
Houston, TX 77030
(713) 790-0379

We'll be here through February 12th, then we have to move out before we can move back in. Sort of a hassle, but since we're not paying anything but phone service, it's worth it.

It's far easier to check my new email, so use
morganjc50@yahoo.com
and I can check it faster. My old account through swbell is now 99% SPAM, and it's hard to wade through all the trash.

Blood tests and results tomorrow, will post all results, white counts are expected to fall fastest will be neutropenic in about 2 days, and I'm on a mask all the time now. Still feel good, and considering I was only a good bet to still be here today, I'm doing well! As Mark Twain so aptly put it, "The reports of my demise have been greatly exagerated."

More as I get them, we're keeping everyone in our thoughts and prayers,

Chris and Terri

11/23/04

2004-11-23T22:15:00.000-06:00

Greetings,
I got my mylotarg, and went 2 hours before any reactions. I had chills for about 10 minutes, followed by fever at 101.5 That's not as high or bad as the first time I got mylotarg, I had chills for about 30 minutes, then fever of 105.something. I'm tolerating the drug more, and have an appointment in 2 weeks for another dose. The first effect is a drop in white blood cells, followed by a drop in the other blood components.
We're having another thunderstorm day here, winds expected at 60 mph, and flooding expected with possibly another 4-6 inches during the storm period. These poor people have had their time with storms, just heard that IAH airport just evacuated the tower because of winds. Towers are the last to evacuate, and really screws up traffic for hundreds of miles as planes must now divert and find their own way.
I should be going home tomorrow morning, we're moving into the free apartments. When I have the phone number there, I'll be sure to post it.

I'll post more as I find out, please keep the people here in your thoughts; they need it.

Chris and Terri

11/22/04

2004-11-22T22:29:00.001-06:00

Greetings from Alkek Hospital, MDAnderson Cancer Center,
I'm admitted, the rooms here are awesome. I have cherry wood floor with honey oak inlay, awesome food, and floods raging throughout most of Southern Texas. Our section of Houston is not yet under water, but Wharton, TX, got 15 inches of rain in 24 hours, and is mostly under water. People here went through the warmest October, and now the wettest November on record.

I start chemo early tomorrow morning so the doctor can follow the infusion. She's pretty excited about it.

We're not supposed to use the cell phone in the room, so the number here is 713 745-8673. I'm in green 1237 on the 12th floor and should be out of here early Wednesday morning. Mylotarg is normally given on an outpatient basis, but because I've had one bad reaction, she wants me in patient.

Everything seems to be going very well, except that we miss so many people so much. We're afraid that Ryan and Christy will have T-Bone riding a bicycle before we get back there, if they're over their colds, that is. (T-Bone doesn't have a cold, so he MUST be the culprit.

More later as we learn it, send life-jacketes!

Chris and Terri

11/21/04

2004-11-21T21:41:00.000-06:00

Greetings,
Meghan came by last Thursday and left from Hobby on Sunday, Danny arrived a hour before Meghan checked in and left for St. Louis. We had a great time with everyone, introduced Meghan to my doctors and a few of the really good restaraunts in the area. Amazingly, we introduced Dan to some of the same restaraunts.
We had Dan's blood checked, and there was a problem with the test results, so tomorrow I start chemotherapy with Mylotarg, the same chemo drug that dropped my blasts counts from 100% to <20% when I was given it at St. John's in St. Louis. After that, I start a search against an MUD file, matched unrelated donors, that has already produced 5 potential donors. Luckily, we change insurance companies 12/01 which will help with the $12K search. With the very real potential of remission, a bone marrow transplant has a far greater rate of success of totally curing the cancer.
We are on our 22nd day of rain in a row, and we just say the forecast for between 2 and 4 inches tomorrow. Yippee!
We also start living in our free apartment this coming week, our email will stay the same, and the cell phone number 314 265 6846 will still work. It will save us $4K for the three months we get to stay there. We have the option of renewing our "lease" so we may be able to have 4 or 5 months free rent. It's a nice 4 room apartment fully furnished, so we'll be fine, and there's a local free shuttle to the hospital, so we'll save parking fees at the commuter lot.

I'll post again as soon as we hear more, this blog spot has had its problems recently.

Chris and Terri

Gift from good friends

2004-11-15T22:22:00.000-06:00

Sorry it has been a long time since the last post but I just wanted to share a great gift from our good friends, Calvin and Shannon. As you can see by the picture, this great inventions keeps things clean on the changing table. Yes it is a pee pee tee pee. A nice little hat is placed over Trevor's ummm.......... you get it. This washable "hat" keeps urine from spraying all over the room. I love it. It is a great invention. So you ask, where can I find this wonderful "hat"? Well you must travel to California and stop at a certain furniture store to purchase. Yes furniture store!!! Anyway just thought I would let all future parents know if this great invention. Enjoy

-rm

11/12/2004

2004-11-12T09:22:00.000-06:00

We FINALLLY got approval from Blue Cross for my BMT procedure. It's not like it is any surprise, they've approved the HLA typing before, but it took them about a week to approve all the associated costs. (I understand this could cost nearly $300K) Glad I've got insurance.

Danny is due in Sunday about 4:40 at Hobby. We see the doctor Monday, and I start BMT procedures the following Monday. After that, I've got about a 70% chance of remission, and a 33% chance of totally curing the cancer. This is pretty exciting news. And to think; when I left St. John's, I wasn't expected to last until Christmas.

More as we here it.

PS Ryan and Christy and T-Bone
Love the video.

Dad and Terri and Meghan (is here and thinks the weather is far better than back home. She also really loved the Cold Stone, and we're off to Thai "Nit Noi" restaurant tonight.)

Day after shots

2004-11-09T22:49:00.000-06:00

Wow what a day. Trevor and I had a rough day today. He seems to be a little under the weather and boy is he letting me know it. I bet secretly Christy really didnt mind working today. He is finally asleep now, and it is quiet once again. I found a pretty cool program today. It creates those mosaic pictures I know many of you have seen. Click the link below to check out some of the pictures I have done. Sorry dialup users but they are pretty big.

Mosaic 1
Mosaic 2

You can download the program for free

http://andreaplanet.com/andreamosaic/

Enjoy

-rm

Trevor Update

2004-11-08T19:58:00.000-06:00

Had our 2-month check-up at the pediatrician today. Trevor is now weighing in at a whopping 11 lbs 5 3/4 oz (50th percentile up from 8 lb 3 oz at 1 month which was 20th percentile). He is 22 3/4 inches (still 50th percentile up from 21 1/2 inches) and head circumference is 15 5/8" (40th percentile up from 25th percentile a month ago). He got 5 vaccines in four shots (DTaP - diptheria,tetanus, pertussis; polio; Hib - haemophilus influenza; hep B; and pneumococcal) which he did not enjoy at all. In fact, he seemed to protest the shots more than the VCUG with the catheter up his weiner. As far as the hydronephrosis goes, we don't have to do anything other than have a follow-up ultrasound at 6 months and we are off antibiotics since the VCUG showed no anatomic problems with the urinary system. Chances are, he will just grow into his left kidney and it will resolve. That's all for now. Glad to hear all systems are go for the BMT (doesn't Subway have a sandwich called that?!?).

Updated Movie

2004-11-08T19:48:00.000-06:00

I know some of you had problems seeing the movie of Trevor, so I re-encoded it. Click the link below to see the new version. It lost some quality, in conversion.

Click Here

11/08/04

2004-11-08T16:05:00.000-06:00

Finally,
We had our appointment with the BMT doctor today, and the lucky winner is:
Danny

We left two messages, hopefully I can tell him before he reads this. The procedure is as follows:
If he can make it here quickly, like Thursday, he will have a blood test to rule out any odd possibilities, then given an injection a day for 4 days to build up his stem - cells. He then donates blood; no pick-axes, no pneumatic drills, just boood, and then he gets to go home. I then start a regimen of chemotherapy and then the blood is transfused. I then undergo blood tests for abot 100 days, then I go home, rest another month or so, then go to work.

As you can imagine, my smile goes ear to ear. When I left the hospital in St. Louis, I had 100% blasts in my bone marrow. I now have 24%, and the head of the department, my BMT doctor, says it's still a go.

Prettty good news, we're off to celebrate at Cold Stone Creamery, one of the best ice-cream places we've found.

More as I hear it,

Dad and Terri

The trip

2004-11-05T13:46:00.000-06:00

Well so far so good. The trip to California has been great. The weather has been pretty cold, but it is great being in the home land again. We are eating at all our favorite spots, and seeing all of our good friends.

Trevor slept just about the entire flight, and has done great in the car. Almost too good because he is getting Christy up a lot more at night.

We are getting ready to enjoy some North Beach pizza here, so I need to get going. Trevor is smiling a lot more, and talking (baby talk) a lot as well. Everyday he becomes more fun.
Here is a video I took with my phone. I hope all of you can see it, and it works ok. Click the link below

Click Here to See it

You will need QuickTime to view this movie. If you can not see it then go to quicktime.com to download it.

We've moved.

2004-10-29T11:37:00.000-05:00

Well, we moved from the hotel, it was costing too much, and found a furnished apartment for a lot less. For those interested, we at
7777 Greenbriar
Apt 1012
Houston, TX
77030
(713) 795-4327

We actually have a living room, kitchen, laundry room, dining room, large bath, and the bedroom has a walk in closet bigger then our bathroom at home. Nice to have a "real" place to stay until the free apartment becomes available. (We're still on the list, "it shouldn't be too much longer" is all management can tell us.) Our shuttle stop is a few blocks away, but we're still close to all the shopping we'll need, we even still have a Kroger here, and can get bottled water (my doctor does NOT want me drinking unfiltered tap water, it's so bad here) for .29/gal if we bring our own bottle.

Appt. Monday with oncologist, we find out then if we start a chemo regimen or go directly to bone marrow transplantation. Another case of "hurry up and wait."

We tried to get Ryan and Christy to just put Trevor on a plane to Houston while they were in Yosemitie, but they already have him booked. Darn!

We'll try to let you know as soon as the results are in Monday, we've only found 2 machines open to the public here. I guess they're hiding the rest.

Dad and Terri

Day before we leave

2004-10-28T23:19:00.000-05:00

Wow for a little boy he needs a whole lot of stuff. I think we almost have everything under control. For those who don’t know, we are going to California to visit some friends. We will be in Yosemite the firs weekend, we will hit Russian River Valley for wine tasting, and be with friends the rest of the week.
Christy is a born packer and does a great job getting everything together. I have learned to just stay out of the way. Well not too much to say. I have a picture from a couple days ago after Christy worked 24hours with only about 3 hours of sleep the night before. Just give her the baby and a bed and she is happy. I am sure I will be updating the blog while I am out in California. I think they have internet access there

-rm

Rough day for Trevor

2004-10-27T15:41:00.000-05:00

For those who didn’t know Trevor was diagnosed with hydronephrosis (enlarged kidneys) even before he was born. This is not that uncommon to see in boys, and normally fixes itself within the first month outside of mom. When Trevor was 1 month old he had an ultrasound done, and it still showed his left kidney was slightly enlarged. So we had to go to the doctor today to have a VCUG (voiding cystourethrogram). Basically they put a tiny catheter in his penis and into his bladder. They fill his bladder with an agent that shows up on X-ray and they see if urine is leaving the bladder and going back up to the kidneys. Trevor was very brave, and did a much better job than I would have done. The test ruled out the two major bad causes and everything looked normal. He might just be made with one kidney larger than the other. We have to follow up with the pediatrician to see what he says to do.
Well we are getting ready for our first big trip with Trevor this Friday. We are going out to California to see friends from Stanford and my old job. It should be a great time. It will be fun to see how well we do with Trevor on a nice long trip.

These are pictures taken with my phone so they are not great.

-rm

Very interesting

2004-10-26T21:30:00.000-05:00

http://rpmayer.com/xpentagon.swf

Take a look at this and tell me what you think. I sent this to some, but not to all. I find it interesting.

Not much else to comment on.

-rm

10/25/2004

2004-10-25T18:16:00.000-05:00

Blood work is in, blasts are still growing in percentage, but absolute count is down. Creatinine is also a concern, so I get a bag of water tomorrow, and more water instead of tea during the day.
WBC 2.8 L K/UL
Blast percent 18%
Creatinine 1.7 H MG/DL

Still waiting for Tom and Dad to get their kits to return.
Blood work Wednesday, more when I hear the results.

Dad and Terri
PS Did Galveston Saturday, fed the sea gulls some bread we had left over from Salt Grass Steak House, my reward was a sea gull crapping on my hat. Just another instance of "No good deed ever goes unpunished."

Friday Oct 22

2004-10-22T13:59:00.000-05:00

Got blood work results, my blasts are up, but still 87% lower than when I left St. Louis. I'm a little high on Phosporous, so I'll stop chewing on railroad flares. The important counts are:
WBC 2.5 L M/UL
RBC 2.47 L M/UL
Hemoglobin 8.0
Hematocrit 21.5
Platelets 96 L K/UL
Neutrophil % 71% (Good Guys)
Blast Percent 13% (Bad Guys)

If anyone wants any other info, I have lots of other numbers that don't mean much to me, but they're still there.

We have today off, found that Blue Cross will pay for the tests of Tom and Dan, so the kits are on their way. (Had they not paid, it would have cost us $5K apiece for the tests.)

Supposed to be T-Boomers this weekend, but we may still had to the gulf, it's only a few miles down the road. I may be a good chance to get away from the hotel and hospital even if it's raining.

Doing well, graduated to a cane instead of the walker. I'm much faster with it.

We'll keep you advised of any news, off to the hospital cafeteria for some really good food. (Right!!!)

Dad and Terri

Little parts that Dad loves

2004-10-19T22:21:00.000-05:00

Sometimes you have to sit back and enjoy the little things that makes my boy so great.

--rm