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November 28, 2010

Happy New Year!
Happy Feast of Clare Catherine!

Saturday, July 31, 2010 AM

Things are going really well. Good health is awesome!
My baby turned twenty yesterday! Okay, not my "Baby." My Firstborn!

Meanwhile, Michael Patrick and Thomas have spent the week at CampCARE. They totally love it there. It is the only chance they get to be away from home and family and have fun fun fun. The people at CampCARE are like family, even if they don't even know all of the names. It is nice for parents to know their little ones are in good hands. It is awesome and I cannot thank the CampCARE crew enough. I know they suspect how much it all means, but I can't help but think they still underestimate it.

It's been a great year, and I think for Thomas and "Mikey," this annual week is what counts, and what makes it a great year.

I still love the 2009 camp photos, but maybe I'll post new ones soon. For now, it's about time to go meet the bus, and give my boys "a great big hug and an extra squeeze." As Bear says, "Waiting is so boring!"

Blessings!
MamaWren

June , 2010

When we went on Michael Patrick's Make-A-Wish trip, we stayed at Give Kids The World Village. It was amazing! A family could have plenty of fun there without ever venturing out to the theme parks. The villa instantly became "home" for the week, complete with all the medical equipment we needed and more. We'll hold GKTW in our hearts forever. Now we have a chance to help them in a big way. here's an email I got:

***Help Refresh Give Kids The World With the Click of Your Mouse.***
Every day in June, you can help Give Kids The World Village earn $250,000 with just the click of your mouse. The idea to "refresh" the Village is now live on the Pepsi Refresh Project website - and we need your help!

By voting once a day, every day in June you can help Give Kids The World receive this grant to refurbish our Village villas.

Follow these easy steps:

Visit www.refresheverything.com/givekidstheworld and click the "Vote for this idea" button.
A pop up window will appear where you will enter your information and sign in.
After signing in, you will be taken back to the Give Kids The World page. Click "Vote for this idea" to submit your vote.
Tell your friends, family and colleagues to "Vote 2 Refresh" GKTW.
Repeat once a day, every day until June 30.
It really is that simple to help us reach this amazing goal. Our success is in your hands!

About Give Kids The World


Give Kids The World Village (GKTW) is a 70-acre, non-profit resort in Central Florida that creates magical memories for children with life-threatening illnesses and their families. GKTW provides accommodations at its whimsical resort, donated attractions tickets, meals and more for a week-long, cost-free fantasy vacation. With the help of many generous individuals, corporations and partnering wish-granting organizations, Give Kids The World has welcomed more than 100,000 families from all 50 states and 70 countries.

For more information about Give Kids The World, visit www.givekidstheworld.org.

Wednesday, March 24, 2010 6:39 AM

It is going to be a great day!

Michael Patrick is a five year cancer survivor!

:)

Monday, March 22, 2010

Michael Patrick was looking at the picture that has been on my wall since 'my wall' was at Duke, saying it was the day he couldn't smile. It was a pretty serious look on his face, but I told him he did smile that day. The day without smiles came much later. I took him to the computer to show him a picture of the day he was thinking about. It was on his own website. (You can see it...Right above, on the right side, near the top) He had really tried hard to smile that day. It was such a challenge.

He asked to change the background on his site. I was happy about that. We used to do that together quite frequently. Not counting, of course, the phase of leaving turtles on for AJ! Before that, he always wanted to match AJ's site. AJ loved green, assuring turtles frequented his page. So tonight, we sat at the screen for quite a while, trying a click here and a password there, hoping to break the code to author access. Finally, we're in. He tried a few backgrounds. It was almost as fun as it used to be to do this. He talked me out of the teddy bears, and I talked him out of the auqua background with white words! That was just painful to see. ;) By the time we managed to get the background the way he wants it, it was well past his bedtime.
I sent him to bed, but surely we will remember how to gain author access again soon. There's so much to tell. For now, though, He wants to update that

Tomorrow he has EOGs, and it is Tuesday the 23rd.

Maria Montessori's philosophy didn't include Spring Formative Testing, but as a public school, we must make sure it gets done. I have the joy of being a proctor. So a good night's rest is in order. We'll update this week for sure. Meanwhile, if you knew that we haven't updated in a long time, thank you for checking in. We love that you care and can always use a prayer.
Blessings O Caring Bridge-Friends!

Tuesday, July 28, 2009 10:07 AM CDT

I figured out how to log in! This is a big deal, and I hope to remember again next time! Here's some of what has been going on:





***Michael Patrick is healthy and doing well. He is currently having a blast at Camp CARE.

*In mid-April, he and Thomas went camping with Dad and the Cub Scouts. They learned quickly how cold it is in the mountains when early Spring is lavishing Charlotte with warmth.

*In early May, we went to Durham for the Rainbow of Heroes Walk. Our new neighbors joined us there. It was really cool. It was wonderful to see patients who are ten years or more out from transplant. The very first transplant recipient has grown up and earned a PhD. He will be joining the PBMT team. We all agree it is pretty fabulous.

*Second grade has come to an end. Michael Patrick managed to get the highest marks possible in the last three quarters. Seems he thought he didn't have to do any work there for a while. When he puts his mind to it he does well. He enjoyed school most of the year. I was amazed to hear him tell someone that his Pre-K year was his favorite since he didn't have to go for long. Okay, in case it isn't obvious, he was at Duke when that year began!

*Summer is zipping by and Michael is happy to spend an entire day with SpongeBob and a Gameboy. I practically have to force him and his brother to get outside and away from screens (TV/computer/video games). I send the dog with them too.

*A previous journal entry is a news flash that Michael Patrick can ride a two wheeler. It was true, but shortly after that post, he requested his training wheels go back on for a while. He tried again this Spring, and has been doing really well. The difference in his skill wasn't that big, but his confidence level had skyrocketed; not necessarily a comfort for a mother, but very good just the same. His skill quickly reached the point of, you know, "It's like riding a bicycle..." He has such a good time riding his bike now.

*Ms. Stacey asked him to be a part of Team in Training, as an honored patient hero. He happily agreed to do this. If you do not know about Team in Training it is worth looking it up. These people are amazing. They commit to raising a certain minimum amount of money for The Leukemia & Lymphoma Society while they train to participate in an atheletic event of some sort. There are 1/2 Marathons, Marathons and Triathlon events all over the country.
*He has a schoolmate who does children's triathalons. We went on May 30th to see him swim, bike and run. It was very interesting and Michael Patrick found it as fascinating as he thought he would. He says he wants to do them too. He hasn't asked me to look into it any further though.
He does want to participate in a Team in Training event just as soon as he is old enough. Who can resist the thought of Michael Patrick being sixteen and well enough to train? Gotta love it. He's spending his 8th birthday with the team. Maybe he'll spend his 16th birthday with TNT too, signing up as a participant!

* Our school held a silent auction as a fundraiser in March. One of the items auctioned off that I won was a day at the pool with Ms. Karen for a student and a guest. Thomas has been in her class for the last three years. He will need to change teachers to begin his years in 4th, 5th and 6th grades. Michael and Thomas had a great day with Ms. Karen and her two daughters. I had a great day hitting the library for books about outsider art. I had a research paper to do.

*They hit a pool again Saturday, June 27th with the Camp CARE crew. It was a wonderful pool party and picnic that gave us a chance to meet, or get reaquainted with, many of the counselors and campers who will be at Camp CARE this year. The boys were actually at Camp CARE at this time last year. It was their first year attending since Michael Patrick had just met the minimum age required. They had a blast! I joke that I dropped off "Michael Patrick" and six days later I picked up "Mikey." Camp CARE is really a wonderful group of people on a fabulous mission. The boys couldn't wait to go again!

*The children have a new baby cousin and we traveled to meet him. We had a chance to see the family, which is a marvelous thing indeed. I know we all miss out by being so far away. Cousins are cool. We also got to visit with some of Mike's lifelong friends. We enjoyed every minute of our trip. The only part that wasn't way too short was the car time.

*I do wonder if any of you are out there any more? I know I do not get to "the Bridge" as often as I would like. It is hard to believe now that I used to read everyone's site every day! How did I have time for that? Oh yeah, I was sitting with Michael Patrick as his infusion pumps ran. Now HE is what does the running! I just try to keep up. Well, not "up", but at least not-too-far-behind him.

* From time to time Michael Patrick comes up with a new favorite sandwich. The most recent is grilled blueberry jam! He has never liked cheese because Thomas couldn't tolerate it when they were little. Michael still refuses to try it even though Thomas safely enjoys it now. Like Joey, Michael likes "grilled cheese without the cheese" sandwiches a lot. For fun, we sometimes find something for the middle. It rarely becomes a favorite, but the homemade blueberry jam sure did.

*Medically speaking, he was FOUR YEARS POST TRANSPLANT on July 14th!!!! HOORAY!! His four year studies at Duke will be in between his return from Camp CARE and turning EIGHT!

Remission Commission

If you would like to sponsor Remission Commission in our fourth trip to The Rainbow Of Heroes Walk at Duke, we would appreciate it. It is money well spent. There are three ways to give:
IN PERSON:
Any member of our family will gladly accept clearly specified cash or check in any amount. Please write "09RH" in the memo of your check made payable to "Duke University". Contact us in the way you usually do.
ONLINE:
Visit the secure site to use a credit card.
http://www.rainbowofheroeswalk.org/modules/gifts/donate.php
** select “Remission Commission” from the dropdown list**
MAIL:
Write a check made payable to "Duke University" to the address below. Please write "09RH" in the memo field and indicate that it is for the specific team, "Remission Commission".
Mail checks to:
Lindsey Kearns
DUMC Box 3350
Durham, NC 27710
This walk is to fund the Family Support Program that took such good care of us while we were living in Durham so Michael could get his bone marrow transplant. Not only was Michael battling Acute Myelogenous Leukemia at three years of age, but our whole family had been uprooted from our lives because of it. Many families arrive at Duke with no money, no place to stay, and no resources to help them receive these things. Family Support does so much more than distract and cheer the patients, siblings, and parents, though that is an important part! This program did and does provide various resources needed to get through transplant (i.e., phone cards, information, parking passes, money for food and transportation, even rent). Read more Program specifics at the walk web site by clicking on FAMILY SUPPORT.
This and other information about the walk is available at http://www.rainbowofheroeswalk.org
THANK YOU for sponsoring Remission Commission in our support of The Duke Pediatric Blood and Marrow Unit's Family Support Program!!
All the Best,

the Wrens
for REMISSION COMMISSION

Tuesday, March 24th 2009!

It was four years ago today that we found a name for the something serious going on with Michael Patrick. The primary tumor had been located (the masses behind his eyes were secondary by nature/location), and the surgery to cut a portion out had been done (Michael's Hickman catheter/"Central line" had been placed while he was under). The pathology results were in. This primary tumor -- the second to be found, but first to be formed -- had a name. Funny thing is it only had a name for a very short while. I learned the term Granularcytic sarcoma only to learn that the term has been deemed obsolete. (I never learned the confirmed spelling) Well, it is a type of Acute Myelogeneous Leukemia; AML for short. (I think subtype M4) It was in those few seconds of hearing Dr. Parmley identify granularcyticsarcoma that I told myself that nothing had really changed in the last 45 seconds. That was as true as the fact that everything was changing. Everything we could think of (and many things we couldn't) had begun to change. The whirlwind began, and the rest, as we say, is history. No really, it is in the history. There's a very prayerful week or two in cybersomewhere else, but most is here as it unfolded.

Dr. Parmley shared with us that thrity percent of AML patients have a five year survival rate with a bone marrow transplant. "Thirty percent, by golly, that's alot!" "Let's go!" These words were reverberating within, and perhaps around, me, like a cheerleader in my heart. Seconds took hours, yet hours took minutes to tick by. Mike did a lot of calling; answering; dialing. He did most of it out of earshot of Michael Patrick and me. He was never gone long, but there were lots of things going on. I am ever so greatful to the Wren family for holding Mike up in these moments. As much as I held Michael Patrick up in the minutes and months that passed, the Wrens held Michael J! Wow! What an amazing support network! They made the tough calls, gathered information, made the big decisions, advised Mike. We are so blessed.

So it was decided that since there were no pediatric bone marrow transplants happening in Charlotte (at that time!), we would get the chemo and transplant in the same facility and that facility should be Duke. We'd fly him up...alone...Mom and Dad could meet him there...in three hours or so, if they didn't get lost!...{here, i had to surrender completely to God's control}...wait...no, they'll send a Life Flight truck instead of helicopter...

Okay, so all the seconds/minutes/hours/whatever they were tick by (I think it was two hours, but a lot was going on), and we're ready to leave Presbyterian Hemby. Michael Patrick tells me that he does not want to ride in an ambulance. He's on the gurny-thing; he's going to go in a LifeFlight truck any minute; he doesn't want to go in an ambulance! I have no clue what a Life Flight truck looks, like, but my guess is that it looks like (hello) an ambulance! {God is so good!!} We're walking beside him as he rolls, right? We exit the hospital and guess what we see. An ambulance. Michael Patrick says, "I don't want to go in an ambulance". I can tell by the way they're walking, or perhaps they've actually indicated the location of the truck beyond the ambulance, I don't recall, but I told Michael Patrick, "Okay, you don't have to go in that ambulance." There was a second ambulance and I assured him again that if he didn't want to he didn't have to go in that one. The Life Flight truck is bigger and blue! Oh how BLUE, perhaps Duke Blue, I don't know, but very bright blue! When we saw it, it was perfect and I said, "You can go in that Life Flight TRUCK instead". I didn't think of it til just now but perhaps he had to come to his surrender to God moment then too. It is true and good to know that God has it all under control. He won't control us, but if we let Him, He controls well everything; every little and big thing.
Guess this might be the day I started saying "It's all good". Moving to Durham (where-ever that was) wasn't as bad as moving to Minnesota or Tennessee! I think it was about even with New York though. I got to ride in the same vehicle and Michael Patrick could hear my voice. I could hear him call me and answer back to him to reassure him that I was with him, and Daddy was following right behind us in his blue van. I had promised him that I would stay with him and I would be his Mommy forever.
This was the evening that we landed in Duke's Pediatric Intensive Care Unit. "Pik'yoo" I say we landed because it was really as if we had been transported to a SPACE STATION! Duke really really looked and felt like a space station to me. It took some time to get used to it. Time to get used to it we had. It became "Home on Fifty-One", and then "Home on Fifty-Two". We still say "Home Home" every now and again about home, just for fun. We re-named (or should I say nicknamed) every section of the hospital that we frequented. The main elevator area remained the space station.


Oh what a blessing to be reflecting on a time in the life of our healthy seven and a half year old.

about March 18th

It was four years ago today that we knew something serious was going on with Michael Patrick. Dr. Marshall called Dr. Eichenbrenner's office and insisted Michael Patrick and I go the hospital. We went right from the eye exam to Presbyterian Hemby Children's Hospital, with instructions to go right into the elevator and up to the Hemby floor. They were expecting us.
One of my most vivid memories is that when we walked into the main hospital from the parking garage, Michael Patrick said, "This place looks like itsa hotel!" My reply was as delightful as I could muster. You know that wow-breath of excitement where you sorta say yeah? I said, "If you're lucky, maybe they'll give you a room?" I think I followed it with "and you can STAY..." But that isn't the vivid part. It was in that very moment that I set off on the adventure of loving my child through this journey. I was to be his partner in being positive. We're lucky! They did give us a room. Like I said, they were expecting us. The room had a great glass (sliding door?) view of the best playground in town...behind the curtains. We'd spend the next six days there for diagnostic testing.

March 18, 2005, was when we met Dr. Mogul. He was wonderful! He made us understand what was going on and helped us have a clue of what to expect. He was absolutely the right person to interact with our family to get us started. (most of us being children, that's far more important than you might know).
Four years later, here we are on a Wednesday and Michael Patrick and I have some time to spend between school and a meeting for his First Holy Communion preparation... We decided to spin by Blume and exchange celebratory hugs with Dr. Mogul. It was just about the same time of day and everything! Besides, when Michael got his check-up on Feb. 9th, Dr. Mogul wasn't there. We HAD to go by.
Well, Sadly, he wasn't there. It is probably more great than sad really, but that is to be discussed with him...

So here we are at the new Blume. Dr. Bryant came out to greet us when she was told we were there. (She hadn't seen us on the 9th either). It was so great to see her. She gave us a wonderful tour of the fabulous big Blume! SherriLynn's pictures were there. I was so happy to see them, as it was the "this is home at Blume" moment for me. (ah, that's Sherri Lynn BLUME, by the way)
Doctor Bryant showed us all the parts that we missed on the 9th. The treatment areas are so comfortable now, with lots of fun built in. It's possible to have community or private type settings for treatments. The windows are shaded but there is still a view, and no one can see inside. It was a very joyous afternoon. Dr. Bryant made sure of that. She even made sure we saw the people there, and of course there was talk of ice cream coming soon.
Since then we tried to bring some ice cream by to her, but Michael Patrick "got a little carried away"! No, I'm joking! Just being silly. Angela and Paulette will get the quote! ...But you never know... It could happen.

Tuesday, March 17, 2009

Knock Knock *** Who's there? *** Dublin *** Dublin who? *** Doublin' the wishes we have for you for a Happy Saint Patrick's Day and good health too!

Remission Rules! Today is a good day to celebrate life!!

This day is not without its challenges, but after all we do know it is all worth every effort indeed. The feast of Saint Patrick was always wrapped in emotion for me. I'm sure it always will be. Happy birthday Cousin!! :)

Michael Patrick had his check up at the new and large Blume Clinic. It went well and he has a clean bill of health once again. Praise God! I'll post numbers if anyone is interested. I think most of us have gone back to not needing them so much. I gotta admit though, I was glad to get them.

Spring is going to spring soon and that means we'll be heading up to Durham for The Rainbow of Heroes Walk. Michael and I have been longing to be there already, but we'll wait...maybe. I'd love to zip up to see tulips and wysteria first. Not to mention friends! We'll see.

By the way, Michael Patrick's hair has grown a bit. Maybe we'll update pictures soon. He has also begun preparing for his First Holy Communion.

Thank you for your prayers.

Friday, January 23, 2009 6:09 AM CST

Michael Patrick is doing well.
He is getting lots of work done at school ever since we went back from the break. This is quite possibly the best news I could share about him. It is right up there just below continued remission. We had a SNOW day, and ended up with only two normal school days this week.
A visit to Blume is in order soon. His last check up was in the Summer when he had his Three Year Post Transplant Studies.
His hair is slowly growing. He's set on achieving the ten inch ponytail for Locks of Love. I'm just not sure how old he will be by the time that happens. Always nice to look to the future.

He misses working so closely with those working for LLS. (The Leukemia and Lynphoma Society)

Webkinz Foundation had a contest asking for suggested causes. Our entry was about finding a cure for Cystic Fibrosis. I found a web site with information about the Children's Fund at UNC. It is http://www.myspace.com/cf_cure

If you know about CF, tell someone about it. If you do not know, please read, ask, and spread the word.

If you are reading this, you are on my prayer list (possibly by name!), and I hope we will be on yours, at LEAST for the moment.

Blessings,
MamaWren

Wednesday, November 26, 2008 7:50 PM CST

Wishing you a beautiFULLY BLESSED T H A N K S G I V I N G !

Michael Patrick is doing well. We are very blessed indeed to have our health and home and hearty food and happy folk.

As we count our blessings, my heart fills with thoughts of those far away whom we love and those who are serving our country even as we feast. May God bless each of you, and God bless America.

Tuesday, September 23, 2008 5:17 AM CDT

Michael Patrick is doing well.
We are getting ready to Light The Night on Saturday.
It is not too late to sponsor Remission Commission! The link is below.


Michael is doing well. He is excited that The LIGHT THE NIGHT Walk is this Saturday!! It's also Uncle Billy's birthday! ...

Things are going well around here and we try to keep up through the downs that come along. None of them have been related to Michael Patrick's health, so that is good.

Keffer Hyundai held a ceremony on Sunday, the 21st*! Hyundai's "Hope On Wheels" has been raising money and awareness of pediatric cancer for ten years now. Michael Patrick was one of five local survivors (who are also active with the Leukemia & Lymphoma Society) who placed their own handprint on a white Hyundai SantaFe. It was pretty cool. They also sent their handprints to Hyundai headquarters to have them made into stickers for the national vehicles. Those will include the name and age of each child. If you get over to Keffer Hyundai you can see a canvas with the handprints as well.

So this SantaFe is going to be at the Light The Night Walk!
There's a link below to join or sponsor our team. (Thank you!) In case it does not show, it is:
http://teams.lightthenight.org/RemissionCommission_WachoviaAtriumPlaza

Blessings to you. Go hug someone you love!!

slack author

Yes! We are still here and doing quite well.
I've been way behind (even though I know I shouldn't!!) I feel like I have to update in order.
Til then I thought I'd say that the Spring and Summer went well. Michael grew six centimeters from July of 2007 to August of 2008.
Each family member has been busy with something different, and a couple of things together too.
Michael Patrick loves school (even though we miss Ms Angie ever so terribly!!! We know she'll do great things for the new people in her life. "group HUG" from us to Mr & Mrs S.). He and most of his old classmates, along with some new ones are settling into their new class on the hill.

We've been keeping up with Ashley's progress and feeling grateful and praying hard that good news continues and the need for surgeries does not continue. Glad the medical team is staying on top of things. There's still such a connection to our Duke family, and love and prayers are aplenty. I can't explain it, so just know it's all good.
Yep, that's my update:
It's all good!

L O C K S O F L O V E

Park Road Montessori classmates, Danielle Reames, Celia Smith (both formerly in my class), and Morgan Rising (formerly in Thomas's class) had an idea to help others. They sent flyers home with their schoolmates in the winter months, asking "Will you have ten inches of hair by the Spring?...". The flyers included a way to request more information about Locks Of Love. Michael Patrick was very interested, so he learned the details, and got permission from Dad to start growing his hair for Locks Of Love.
Several of the Park Road family skipped haircuts in a group effort to help this worthy cause. Before the end of the school year, there was enough hair to donate!

The Locks of Love event took place on April 28, 2008, at PARAGON SALON, owned by KIM MORGAN, a Park Road parent. Michael Patrick and I rode with Ms. Jill and Grace to see the excitement. His hair isn't nearly long enough, but we're hoping it will be next time, if not in the meantime. Celia and Morgan had some more growing to do too.
Cutting and styling was done by KIM MORGAN, Jessica Matthews, and Rob Murphy of Paragon, and by JEREMY DEEN, also a Park Road parent.
Jeremy's son, "EJ" was there to help. I'm glad Michael had another boy around.
Starbucks Coffee contributed gifts for our stylists. Pizza was provided at a discounted rate by Joey D's.
Ms. Myra helped the girls and grown-ups pull it all together, though she's taking none of the credit.

Children who donated hair were:

Danielle Reames
Grace Owens (daughter of Ms. Jill, who used to have Thomas in her class)
Sarah Pham
Livi Dagenhart (from Michael's class)
Jenni Ray (daughter of Ms. Denene, who'll be Michael's teacher next year)
Pearl Speaks

Adults who donated hair were:

Regina Wahab (mother of Kyle)
Lynn Tingle (mother of Brody and Davis)(Davis used to be in class with Thomas, now he's in class with me)
Suzie Hood (step-mother of Craig and Clay Strickland, not to mention our PTO President)
Michelle Dagenhart (mother of Livi and Sam Dagenhart)
Sue Goodwin (grandmother of Livi and Sam Dagenhart)
Molly Caldwell (mother of Pearl Speaks)

I hope I have not left anyone out.
I'm still waiting for pictures that were taken by Sarah Reames, who also brought homemade cookies.

Needless to say, Michael Patrick had a great time at the salon. He got back to class in time for the end of storytime, followed by cleaning up and getting ready to go home.

If you would like information aout Locks of Love, visit the web site at locksoflove.org

Ms. Angie weds Mr. Brent

*
Michael Patrick's teacher, Ms. Angie, begins married life on May 24th. Michael and his classmates are very excited about this. They are cooking up a few surprises for the newlyweds. Most of them involve the children , how-you-say?, umm, "Hamming it up"! Seems he isn't the only one who likes to be the center of attention.

Best Wishes Brent and Angela S.!

Falling "Behind" in updating ... ... Empathy

The problem with being "behind" in updates is that I feel obligated to "catch up" on updates.
Surely this has been less than helpful.
I'll move ahead as much as possible. I'll be using topics rather than dates for now.

I have at least four updates to give, not the least of them, but the latest, includes the loss of loved ones' loved one. These beloved ones are a very private family, and so I simply say that I am praying for them and my deepest sympathy will have no more outlet here than this. We love him too, and he will be missed. Ironically enough, my most vivid memory includes being in labor with none other than Michael Patrick. Of course Michael Patrick was only "Bo" at that time, as we had not yet agreed upon a name.

Anyway, thanks for checking in on Michael Patrick, wo is doing fine, and for being patient with Momma Wren.

Go hug one another!
God Bless You,
Jean

NEWSFLASH

*
*
*
Michael Patrick can ride a two-wheeler!!!
*
*
*

He got a new bike this Spring. The training wheels have come off and he is as happy as a boy can be!
He wants to donate his trike to The PBMT Unit, even though he loves it so! (Or maybe bacause he does)

Thursday, April 24, 2008 (happy birthday)

Did I mention that Michael Patrick has been running laps with the Girls on the Run group at our school? He isn't official or anything. The (official) girls meet twice a week after school. Stacey from LLS is a coach, and so naturally Michael jumps at the chance to go say "hello", and show off a bit for her. The girls humor him pretty well. Meaning, they haven't RUN him off yet. If I pick on him about it, he has no problem reminding me that well, after all, he is not a girl; he's just running laps. He knows Stacey tells the Team about it, and that just pumps him up.
He has really been inspired by the Team in Training people he's met. Sometimes when we drive near runners, he says they might be in training! It is a cool thought to know that they really could be raising money to wipe out blood cancers.

So, he didn't run today. This is the week end Stacey will be in Nashville cheering on our Country Music Marathon Team! GO TEAM!
How cool is that? (So cool) They are close to Kate! Speaking of Kate, Kate's Skating Center is the place to be Friday. Let's skate for a cure!

As for us here, the excitement continues to build with the Walk fast approaching. Just 9 days left until the 8th annual Rainbow of Heroes Walk! The "Inpatient Celebration" is tomorrow on 5200 to honor all of the brave heroes currently on the PBMT Unit. Family Support will see to it that staff, and patients, and families will make it a great day on the Unit. Let's hold them in our prayers!

We'll be heading to Durham soon! Chances are we won't actually go onto the Unit though. Maybe, if any of us are brave enough, we'll wash up and don our masks and shoe covers long enough for Michael to show them what its all about.
Remission, Recovery, Life after transplant.
My heart aches as I try to type these words. I hold so many children/families in my heart who lost during the struggle. I can only try to be strong in spite of the ache. Not in spite of the children, but because of the children. For the children. For their families. It's what it's all about. It's certainly a struggle.

FAMILY SUPPORT helps these families through whatever their journey into transplant brings.
SUPPORT THEM IF YOU ARE ABLE. Sponsor Remission Commission today.
PRAY FOR THEM IF YOU ARE WILLING. Sixteen families share the Unit at any given time.
The future is uncertain.
Hug someone you love today.

Thursday, April 17, 2008 9:18 PM CDT

It is good to be Michael Patrick Wren!
He really has a cool life. He's healthy and active, and usually happy everyday.

He and Thomas each got a library card of their own this week. They were so very excited about it. Michael has been carrying his with him! He says he is going to learn all about snakes. That's the subject of the books he selected. Thomas says he cannot sleep anymore unless he reads first. Not that reading makes him fall asleep! The two of them are funny. They are trying to get along well enough to spend some time camping together this summer. They are great friends, but they tend to forget to use their words to reason through conflicts. Brothers!

Thomas received the Holy Eucharist for the first time Sunday. It was a special day, full of blessings, pride and joy. Mr. Dave took pictures, and they are posted.

This evening Thomas and Michael and I went to an LLS Team in Training send-off dinner. Several of the team are going to Nashville to run in the Country Music Marathon. I'm getting excited about all their efforts bringing them to the big event. Go, Team, Go! Good Luck!!

Our big event is coming up too. The Rainbow of Heroes Walk is May 3rd! Believe it or not that is only two weeks away.

Nurse Andria, from Blume's big event was on tax day. Her son was born that evening and I hear the family is well. Congratulations!

God Bless You!

Thursday, April 10, 2008

Things are going well !

The Leukemia and Lymphoma Society's Man & Woman of The Year kick-off party was wonderful. There was much inspiration in the room. I can't think of the words, but it was easy to soak it in and feel it through and through. One man said, "It is so good to be around blessed people". Absolutely!
Thank you, Cousin Brian, for joining us! You made the night even more special.
I think there are twenty candidates this year, and each is sure to raise lots of money for LLS! Two of them are from our very own Blume Clinic!! We love them. (Waiting for one of them to send news about Andria, I'm holding her in prayer.)

IT'S ALL GOOD!!

I'd like to dedicate this day to Kate!!! She's a great little girl and we wish her many smiles, and loads of fun, and always plenty of platelets! Love and Prayers to you and your family, little one!



God bless you.

Friday, April 4, 2008

Okay, so perhaps an update is way overdue.
The good news is that there is no medical news.
It may be boring to read, but I never get tired of the fact.

Lots of news in other areas.

Sazu has joined our family. She is a miniature poodle and if you've spoken to us you've heard plenty about her.

We're excited about The Man/Woman of the Year campaign scheduled to begin Tuesday.

Really, that's all I have time to mention now.

Blessings to you and yours,
MamaWren

Tuesday, March 18, 2008

*
Michael Patrick is healthy!

It was three years ago today that Dr. Marshall sent him to the hospital for tests, and Dr. Mogul found malignant tumors.

Michael Patrick has been a Survivor for three years.

Praise God!

Monday, March 17, 2008 5:34 AM CDT

IRISH FRIENDSHIP WISH ...
May there always be work for your hands to do;
May your purse always hold a coin or two;
May the sun always shine on your windowpane;
May a rainbow be certain to follow each rain;
May the hand of a friend always be near you;
May God fill your heart with gladness to cheer you.

Michael Patrick is doing quite well.

It's all good.

Much Love!

LLS TEAM IN TRAINING

The very healthy Michael Patrick has been enjoying his time volunteering with The Leukemia and Lymphoma Society. His most active venture right now is meeting with those raising money through Team In Training. These people are awesome!
On January 26th, I took him to a kick-off and informational meeting with lots of people. (This group is subdivided by area and event or type of training.) He was introduced as one of the blood cancer survivors, or Honored Teammates, if you will. He informed me at the microphone that I would be doing the talking. We didn't say much or stay long because Michael's very first Pinewood Derby was about to take place across town. Still, it was great to see the turnout, and wonderful to have some folks speak to us directly, including Eliza's parents, and Heather (I think) who's Mom had a bone marrow transplant too.
On Feb.12th, the TNT group was smaller, so he was not so nervous. He spoke to those seated nearby, as everyone gathered. I summarized his story and he added to it a bit, including his own THANKS to them. He presented the very first "Michael Patrick Dino-Mite award" to Madison for outstanding training/fundraising efforts. *{52Family: of course I was moved by her name, thought it very fitting, and so at the same time, my heart honored our Queen Maddy and our Michigan Maddie, -even though she's Madeline.}* Stacey invented the Dino-Mite award based on the fact that Michael did some research on dinosaurs recently, and loves the "dinosaur seeds" she gave him. A toy dinosaur, I mean trophy, will be given to each team each week, I think.
Again we didn't stay for their whole meeting, as the 2008 Light The Night planning committee was geering up for their first meeting about ten miles away. Michael introduced himself when it was his turn. We met some new survivors/volunteers, and are looking forward to working on a successful walk. We had a good chat in the car between meetings. It was light spirited though the topics were serious. He was surprised to know that we won't call him "Cured" of AML until he has had five years of remission...when he's already 8, but not quite 9 years old...{I love speaking or listening about his future!} Nothing we need to do...we just enjoy it...
He fell asleep in the car on the way home from the second meeting, so I carried him to his bed. As I tucked him in I whispered, "remissions rules, huh?!". His very soft reply was, "yeah, you get to sleep in your own bed!"

On Saturday (Feb23rd), the TNT meeting was a post-training breakfast at Brueggers Bagels. Michael was far more social, answering questions, shaking hands, sitting with people for pictures to be taken. It was a moist/misty/foggy/cloud-dancing-with-us/WET kind of morning, but that didn't stop these folks from getting out there and running. Some of them have only just begun their training and we also met coaches and a mentor. Carla showed Michael her Dino-Mite award. We lingered a while, allowing for a few others to arrive. One of them running extra miles was Trish, who had already recieved her team's Dino-Mite award. On the way home, during our usual reflective discussion, Michael told me he was just glad he didn't have to run!
Thanks to the Team In Training participants! You are awesome!
We cannot include all of your web sites in our links, but you are welcome to include yours as part of a guestbook entry.That way others can find you easily.
We do love getting guestbook entries whether you visit once or regularly.

Monday, February 11, 2008 8:04 PM CST

Sticky situation

Check out the center picture on the photo page! I couldn't resist sharing it.

A teacher at Lebanon Road Elementary found himself in a sticky situation, but it was all for a good cause. The school raised $3,003.43 during a Pennies for Pasta fundraiser for the Leukemia and Lymphoma Society.


The fundraiser wrapped up with a Stuck for a Buck event. Students paid one dollar for a piece of duct tape. During lunch, resource teacher Jim Bucholtz sat in a chair with his back to the wall. Students bought enough tape to hold him to the wall -- even after the chair was taken away.


Students collected pennies during the month of January to donate to the organization. The class that raised the most money won a pasta party.

PS Michael Patrick is doing well !!

Thursday, January 31, 2008 6:46 AM CST

At his Tiger Cub meeting on Tuesday night, Michael received a plaque for Most Scout Spirit at The Pinewood Derby. The event took place Saturday, and we left just before the final awards were presented.
Michael is excited about getting a medal and a plaque!

Pay it Forward

We are very happy that Michael Patrick has been selected as "Honored Hero" by the Leukemia and Lymphoma Society. It certainly is an honor indeed, and at the same time, very humbling. It is not easy to explain.

I overheard Mike talking to Michael about why it is important for us to have Michael go to meetings with The Society. I hope I don't mess up the quote here. He told him, "When you got so sick, a whole lot of people helped you, and us along the way to getting you better." "When you volunteer," he said, "you help more people, so they can help others who get sick like you did."

And though Michael is a hero in many ways, I think the real heroes just may be the ones who fight for the Society's mission over and over again. The LLS mission: Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families.

So when our little guy smiles and waves at someone who has decided to be Relentless in the cure of blood cancers, I hope they are moved a little more deeply than the average irresistible grin moves them. I hope they know that what they do matters; that what they do is appreciated; that fundraising makes a difference; that statistics are all about real people! Real people like Michael Patrick, and those wonderful friends he has met along his medical journey.

THANK YOU!

FRONT PAGE Header (removed 1/27/2008)

I can write a new the front page, but I cannot delete the old one. Here it is:


On March 18, 2005, Michael had an eye exam & was sent to the hospital. We thought we were going for a test or two, so the sun would not go down without us finding out what was causing pressure on Michael's optic nerve. ... Six days and many tests later we learned that it was due to a form of Acute Myelogenous Leukemia. (AML) ... We moved to Duke that evening, 3/24/05. We had a lot to learn, and adjustments were made daily, both at Duke and at home. ... God has a Plan... It's All Good!

Thank you for your prayers!

Michael started chemotherapy the night we arrived at Duke. He remained in the hospital - his "Home on Fifty-One" - through three rounds of Chemo with very short visits home after the first and second rounds. He achieved Remission, and completed chemotherapy on June 20,2005.

Due to his high risk for relapse he was referred for bone marrow transplant from his 6 of 6 HLA matched brother, Thomas. He entered the Duke Pediatric Blood and Marrow Transplant Unit on July 5, 2005. Different and more intense chemotherapy was given as he settled in to 5207. On the morning of Thursday, July 14, 2005, Thomas had "his operation" under general anesthesia to remove healthy bone marrow to give to his little brother. That afternoon, the (treated) marrow was transplanted into Michael Patrick. He engrafted with >98% donor cells on day +11, and though it seemed much longer to us, he was discharged on August 11th.
He continued daily outpatient care. All complications were successfully treated.
We are fairly certain that - even with the complications he had- Michael Patrick is a "best case scenerio" on all levels. We are very grateful!

We are currently HOME and he is GOING TO SCHOOL without a mask!! He gets checked every three months at our local clinic.

Thank you for your prayers!


*************************************************************


Thank you for visiting our Caringbridge site, and for praying for the families who make this journey.

January 2008

I may not have told you that Michael has:

* Taken a ride on the Blue Lynx (light rail) train
* Aquired three Webkinz pets
* Decided to get a real puppy
* Played alot outside in "unwintery" weather
* Moved into Thomas' room with him
* Performed an experiment in front of his classmates & their families
* Not had a haircut (ten inches of hair by Spring is a high hope)
* Worn his Tiger Cub Scout uniform to school
* Played a lot in Webkinz World
* Helped Juan and Thomas with a lemonade stand
* Grown a wee bit taller
* Learned to shoot pool
* Outgrown Kids Rule shirts (size 2-4)
* Played with snowballs
* Had lots of hot chocolate
* Mastered "Gameboy Color"
* Eaten more waffles than anyone can count
* Connected with a cousin - in Webkinz World
* Been named Honored Hero for Team in Training, 2008
* Participated in his first Pinewood Derby
* Procrastinated doing his first book report
* Learned to cook his own hot dogs (still a favorite)
* Toured our church
* Decided he doesn't really like Spiderman all that much because he hasn't watched it is a long time. This was a surprise to me too, even though I knew he had become more into Power Rangers than Spidey.

Saturday, January 5, 2008

Happy Tim Day!

Day Plus 905, but who's counting?
It is all so good!
I took Michael Patrick to Blume Clinic and joy was in the air. Interesting changes are happening over at Blume. The staff has increased and a move to bigger building is in the works. FIVE of the staff are expanding as well - but that is their news to tell.
The frog room has two wonderful new tiles in the ceiling. One is covered in frogs and cattails, and the other is an original creation by our very favorite Eliza B. Very cool to see!

I have "counts" now, and though I am out of practice at giving them to you, here they are:
It doesn't get any better than this!

WBC = 8.6
LY 56.0
MO 5.8
GR 38.2
RBC = 4.04
Hgb 12.7
Hct 36.9
Plt (that's platelets, which ALWAYS makes me think of Kate) = 282.


Michael Patrick has been all about the Webkinz World, rather than updaing his own site. My how things change. What blessings, indeed. He did select the background here ( We didn't talk about his selection, but is that a disco ball? )

I am hoping he will help me create a front page entry soon.

There is a brand new web site for The Rainbow of Heroes Walk! Woo-hoo! I'll add it to links below.

Monday, December 24, 2007

Wishing you a blessed and joyous Christmas!

(As for an update: "It's all good!")

Saturday, December 8, 2007 11:29 AM CST

Saturday, December 8, 2007 11:07 AM CST
Hello. Michael talking. I am probably sick right now, and my stomach is hurting. I think I have a stomachache.
On Thursday my temperature was eight seven three.
[Mom: you know that isn't true, but the boy can read now, so I must type what he says. I'm just glad he is participating in the update today. His current temp is 98.1. It was over a hundred Thursday evening. We skipped school yesterday, as he and Thomas and I were each feeling under the weather. Michael is not really acting like he's sick today.]

I've been playing Webkinz so much and my sister takes very good care of me. Our Christmas tree is already up.

I have decided to let my hair grow and grow to ten inches because I want to help people with no hair get wigs. My Dad gave me permission to grow my hair for Locks of Love.
[Some students at our school sent home a flyer that has inspired us...]

[oh yeah, ... about the snowman background that Michael Patrick requested: it is simply for fun! Temperatures are expected to be around sevenyt-two degrees today, here in the Queen City.]

Thursday, December 6, 2007 6:20 AM CST

*
*
Day Plus 885
*
*
It's all good!

Saturday, November 24, 2007 9:37 AM CST

Best Wishes to "Mr. & Mrs. Stigler"!!!

Things are going very well for Michael Patrick and family. We have an abundance for which to be thankful! Health of our family and friends tops the list.

I'm not sure why Michael Patrick's Song Of Love doesn't play anymore. If it does play when you view the page, please let us know (phone/email/guestbook...)
I've been thinking for some time now that it is time to change the site a bit. The "front page story" doesn't really give a current overview anymore. I'll be tucking it into "history" soon, as I cannot stand the thought of erasing it.

My brother Joe went to see his doctors, after returning from Cocoa Beach's big Grind For Life event. I was able to watch on my computer, via webcast, as he shaved his ponytail for Locks of Love. He and his doctor(s) are pleased that his maintainance plan is working well. He's been "promoted", if you will from the chemo every three months plan to the chemo in six months plan. Way to go!

Michael isn't due to be checked until early January. I think I can wait. ha ha (that's a nervous laugh; I'm not joking). I remember an entry for the Black's page in which the mother wished she could have a CT scan in the doorway, to check every time her son walked through the door. I got that so well when I read it (ages ago!) that I've never forgotten it. I've actually used it as inspiration in many ways.

Thanks for checking in on Michael Patrick. Thanks for all of you who continue to keep us in your thoughts, and prayers, and hearts. You remain in ours as well.

Much love, and many blessings,
Jean (and family)

Saturday, November 3, 2007 3:42 PM CDT

Michael Patrick is a healthy, happy child!

A week ago on Friday, he and Thomas each had the chance to hold a butterfly on their fingers. It was a very cool event indeed. Ms. Denene was there to talk them through it, stating the two big rules of butterflies: 1) never touch the wings! 2) let it come to you.
I must admit, I only knew the first rule because I've never had the chance to have one climb onto my hand. Thomas said it tickled a little when the butterfly "tasted" him, as Ms. Denene called the movements it made. She told us lots of information as we watched the little guy make his way to the big wide world.

Another really cool event was attending the luncheon for the Planning Committee of The Man/Woman of The Year (2008) for The Leukemia & Lymphoma Society. There are some pretty terrific people involved. Michael Patrick and I had the honor of joining in on their meeting.
I was very happy to meet The Girl of The Year and her Mom! We had actually met once before at a hospital party, but that was about a year ago. I was delighted when I learned that it was the same Eliza. The two - she and Michael Patrick- are said to be Michael's oncologist's favorite patients ever!
I think it is wonderful that they are Boy and Girl of The Year together. (Kudos to Donna C. for arranging it!)

Thomas and Michael are enjoying the week-end pretty well in spite of the fact that Juan and Joey are out of town. Clearly, this was an oversight!

Anyway, it's all good. Thanks for checking in.

The FEASTs of All SAINTS and ALL SOULS

**Michael Patrick is doing so very well. Praise God! **

I hope to tell you cute stuff about him soon. Either that or teach him to type!!
His updates would really be better than mine anyway, I bet.

So that's the update, and here's me sharing a bit of me. Some of you will get this easily and others will have to write it off as as weird as you need to. It is OKAY


I've been avoiding the whole writing thing. That includes guestbooks, updates, and the countless "letters" that run through my head daily to many of you . The truth is that I suspect that many of you know I am thinking of you. Richelle, Alison, Tanya, Nina/Amy, and Crazy Joe, in particular. From late August til now, words aren't enough so I skip them.

Now it is All Saints Day. What a perfect day for a memorial service! My heart is in Tennessee.
Friday is All Souls Day, so you can bet I am going to be very aware of all of the souls who've touched my soul.
I'm even planning to wear my tie-dyed overalls in their honor. There is a rainbow of heroes !

Those we met and had short time to enjoy, who are simply in our hearts. Those whom we didn't get to know and yet we love so much because of the impact their parents, grandparents, siblings, and hospital neighbors had on us. And those too, who's spirit lived through our nurses. Some of them are listed here. I usually skip lists because some name will not be included that should.
This in no way is an indication that there is less honor and remembering today. May God bless and comfort each of the families of these remarkable souls!

Bryce... Jenna... Jana... AJ... Emma Grace... Joseph... Queen Maddy... Maddie... Kameron... Tyler Boo... Lane... Asher... Kelly... Keturah... Benjy... Noelle... Caroline... Frannie... Ryan Patrick... Tommy... Tyler(of treehouse fame)...

And those who weren't at Duke:
Samantha, Tessara. Thomas, Gabriel, Dylan, Angela, Clare, Anthony Jude, Francis Xavier, Joseph Anthony, Joseph Xavier, Shelby Marie,...
All the parents and grandparents and loved ones who've left the Earth. Jack and Peggy, Paul and Margie, Alan, Sue, Jeff, Angie, and those represented by gold balloons!, ...

Those of you reading this, I probably pray for you by name. Today I honor the souls of your loved ones. (it's important to me, please know I mean well, and be not offended)
If you think that is impossible that I pray for you, just know that I do pray for our Caringbridge family in general too, and for all who'll see these words, no matter when.


"May your day include Grace today. And May you notice His Love!"
"In the name of The Father, and of The Son and of The Holy Spirit, Amen"

Sunday, October 14, 2007 2:43 PM CDT

Michael Patrick is having some great week-ends.

He loves being able to play his favorite video games and watch television. Since these are not things for "school nights", he likes to skip a chance to run an errand with teens and parents to stay glued to the screen.
Plus there's outdoor time!
First, there was the Light The Night walk, then camping with his Cub Scout Pack. Now, this week-end, he's just as happy to be outside with Thomas and Juan. Juan has real Star Wars Legos. ...

He doesn't seem to mind too much that I made him see Dr. Tim on Oct 1st. He got a thumbs up.

One week later, Thomas got a positive rapid strep test. He requested that he skip the shot this time, and Dr. Tim and I agreed that he could take oral meds instead. He was very concerned that he may have strep yet again on his birthday, but I think he going to continue being okay through the month.

(I'm leaving out lots of my own personal thoughts, simply to get the site updated. Rather than wait for words ... ya know? Love and prayers to Duke and CaringBridge Family!!! As well as our original -extended- family!)

To: Remission Commission Supporters

Greetings!

We did it! We completed the Light The Night Walk for The Leukemia & Lymphoma Society and we wanted to thank you (perhaps again) for your generous support. Your help and encouragement helped get us to the finish line where we enjoyed Dippin' Dots and Vitamin Water, dancing and bouncing, fun and friendship in beautiful uptown Charlotte, NC. It was an all around splendid evening. More importantly, your donations are helping to accelerate cures for leukemia, lymphoma and myeloma and bringing increased hope, support, and information to the patients and families who are on the front lines of the battle against these diseases, and continued inspiration to those who've stepped back to breathe! Thanks to your combined efforts, our team raised over two thousand dollars for The Society! Way to go TEAM SUPPORTERS!

You can learn more about us, our journey, and our effort by visiting our Web site: http://www.caringbridge.org/nc/michaelpatrick.ha ha, you're here already!
You can learn more about The Leukemia & Lymphoma Society, and even continue your support of the Society by visiting their Web site: http://www.lls.org.

If you'd like to join next year's Light The Night Walk, you can learn more by visiting http://www.lightthenight.org. We feel certain that Michael Patrick's Remission Commission will walk again, so certainly join us if you'd like.

On behalf of The Leukemia & Lymphoma Society, thank you very much for your kindness. We really appreciate your generosity!

Wholeheartedly,
Jean Wren, for the Wren family, and the whole Remission Commission team

God bless you!

Sunday, September 23, 2007 3:00 PM CDT

Hi!
Please sponsor someone on team Remission Commission as we LIGHT THE NIGHT to raise money for the Leukemia and Lymphoma Society.

Most of you know the Society provides invaluable support and information to families like ours who have been touched by blood cancers.

The walk takes place this Saturday, September 29th in uptown Charlotte, and the Honored Hero is Michael Patrick!
Big brother Joey will be part of the NJROTC color guard in the opening ceremony.
You are welcome to join in on the fundraising fun, or simply sponsor one of us already registered. Use the link below either way.

You will receive a confirmation by email detailing your donation.
If you do not wish to sponsor us, perhaps you will forward the opportunity to a friend or two.
I appreciate you considering this matter.

Blessings,
Jean

Saturday, September 22, 2007 10:51 AM CDT

When a memory is as vivid as if it happened yesterday, or maybe last week, it is difficult to wrap my head around the thought of eighteen years! I know, I'm no spring chicken!! Seems so clear, and yet it was almost two decades ago! Mike, Joey, Jewel, Thomas, and Michael Patrick were not yet my world.
Hurricane Hugo had a huge impact in my family. It ripped through my hometown of Charleston - where most of my family lived - and continued all the way inland to Charlotte, NC. I'm pretty sure that Hugo is the only hurricane Charlotte's ever endured. Even my brother in Chicago was deeply affected by Hugo, as his Folly Beach wedding had to be moved, even though weeks of cleanup had passed by then, without electricty.

So, as I try to imagine 1989 as more than a week ago, I recall that it is Day Plus 801 for Michael Patrick.
That's a little over two years, and two months, for those of you just joining us. On the unit, every day has a number, starting (in our case) with Day -10. There are no words for how good it is that Michael Patrick is with us on Day 801!

He is doing well. He is happy that it is Saturday because he and Thomas are able to watch Power Rangers. I woke to find them completing episode one while munching on chocolate chips. We allow none of the sugary stuff for school day breakfasts, so I let it go. A healthy lunch is in order!

Yesterday, Thomas and Michael each went to Festival In The Park (at Freedom Park) with their classes. They had a great time seeing art of many types, and got "freebies" in the form of coloring books, stickers, and so forth. They haven't yet shown us everything, but Thomas was showing everyone his pocket frisbee! Around bedtime, he mentioned going on Gus, the safety bus, and Michael started whining that he didn't get to go onto Gus. Michael and I had a good mock cry over it. Then the three of us had a good laugh.

May there be laughter in your day today.

Praying for a friend!

Jean (4family2)

Catch Up since school started

Well, Happy "today"!

School has been going well for each of us. Five of the six of us attend three schools. Michael J. (Mike, a.k.a. "Dad") has worked right through the Summer months, so I can only say it is still going well for him. The routine of things - though challenging - is on the way to getting comfortable. At least I hope so.
Joey's morning bus stop has been moved much later than it was the first two weeks of school. He doesn't get have to leave at five a.m. anymore. Schedule adjustments have been made at the high schools, and each student seems content.
As I said for each us, school is going well for Michael Patrick. He is still with most of his original classmates, and the same teacher and assistant teacher. This is a very good thing.
He was assigned homework yesterday for the very first time. He was so very excited about it; showing off his homework journal to me after school. I was very happy to see that his homework is the same thing as his brother's homework. Thomas has different spelling words - I think it is the same words in different order. But then again, they only have the words they miss in their own pre-test. They will each write a sentence with their own list of ten words. I am expecting them to do well with it this year, especially Thomas, who has already shown improved efforts.
What else?
Michael Patrick isn't due for a medical check-up until late December or early January. Kind of hard to wrap my head around that! But I have!! He's on the six month plan, which will turn out to be a once a year visit to Dr. Mogul here in town, and a once a year visit to Dr. Martin at Duke.
I feel like I've told you this. Perhaps one of my incomplete updates. ha ha They don't always make it to the site.
Medical check-ups have actually gotten harder for him emotionally as they have eased physically. It is an odd thing to comprehend because they do so much less than they used to. Yet, he doesn't remember as much as we grown-ups remember. Plus, they use real needles for blood checks ever since he had the central line (catheter) removed. So it actually hurts! Anyway, he's not going in for a good while. I wonder if he will even remember his wonderful medical staff. His parents do!!

Speaking of real needles: Michael Patrick has recieved his MMR and varicella (chicken pox) vaccines. I'm pretty certain he has "caught up" to other children his own body age, passing some children who are his new immune system's age. These are live vaccines, and he wasn't able to have them until he was two years post transplant with a full immune system. This is a wonderful big deal!

It is really great that his immune function is normal. Already this school year there have been reports of strep, some sort of a bug with symptoms lasting only half of a day for some children, MRSA, and chicken-pox. That's at our school alone! It doesn't even count the low grade fever and headache Thomas had for three and a half days. He had no other symptoms, but yes, we had Dr. Tim see him, just in case! He's fine now.

DUKE FAMILY:
Does anyone know how Greg or Haley are doing? I think of them so often, but have no way to check up on them. IF you speak to either of them (or to Trevis - if you know him from 5100), please pass along our fond and hopeful greetings!
Yousef and Harrison also fall into this category, then I realize the list grows longer still.

I think it is so wonderful that Kate and her Mom got to meet Izzy and her Mom! I feel a little closer to Izzy now, even though we only know her from checking her site on the Bridge from time to time. Thanks, Cynthia, for keeping us connected even though technically not on the Bridge yourself. You remain a bridge TO the Bridge. ha ha

Blessing to each of these families, and to you the ever important reader of our sites.

alternate calendar

Oh, if I had a dollar for every time I've logged on to update in the last two months.
I do log on, but I check up on friends before I start typing. There are quite a few of them, and it takes a while. I feel like I should sign guestbooks, but when I do I feel like I should be updating instead. i don't sign guestbooks as often as I visit sites. I'm more of a lurker, and sometimes I imagine I'm lurking "with" Alison, Pam, Cynthia, or Richelle. Mary, are you with us?
I enjoy the fact that most of us continue to update, even if it isn't frequently. I've actually been stressed out about getting an update on here. Some folks have been given our site for the first time recently and it would be nice if it were current more often. Alas, I can only do so much. I think only those who do their own journal entries know that it takes a certain amount of emotional strength, and control to do. It creates certain emotions as well. I don't really have words for it, other than to say sometimes it is a huge challenge. Of course that too is another blessing. If I actually have a choice of what to type, it must be a good thing. Health issues are not the dominant thoughts to share.
(I have intentionally tucked this entry into "history" so everyone doesn't have to read it.)

If we made our own calendar recently, it may have included these dates, but very few actual numbers:
"Summer"

"oh yeah, I had a birthday" (yes, it Durham I actually missed my own, and I've been okay with that since)

"swim day" Michael Patrick may swim in all bodies of water other than lakes and ponds. Thanks to my teens who've saved Mike and me from having to venture into water ourselves!

"July 4th" I think our most vivid memory is of 2005, in Raleigh with the OLeary family.

"Ashley and Joseph's transplant day" This is a two year anniversary, which is the same as
"Unit entry day". We arrived on PBMTU in 2005 on the day they got their transplants. Pause for reflection that it makes no sense that Michael is the only healthy one of the three. If I've felt "it isn't fair" on our journey, this would be it!!

"Two years since transplant" Rejoice and be glad. To God be the Glory!

"Michael Patrick is almost SIX!!!"

"Michael Patrick's birthday" He turned four on the Unit, five with Disney's Power Rangers - in person!, and six with his own friends at his own house. They ran and laughed and celebrated life. Only, some of us knew what a celebration it really was.

"Asher's birthday" Pause... again...Are there birthday parties in heaven? Does AJ welcome the guests!? There really are more people there at The Party of Oneness With Our Lord than I like to count! We've not forgotten Bryce, Jenna, Jana, Kameron, Keturah,Tyler Boo, Frannie, Emma, the Madisons, and Lane..., though I don't remember ever mentioning them here. I don't know each of the 'significant' dates. Remembering these children isn't limited to certain days or times, but every day, one or more of them (and/or their families) tug heavily on my heart. I'd have it no other way.

"Before August 27th"
"August 27"
"Before August 31st"
"August 31st"
"School day" Seems like there have been more school days than there have been. I've been rehired and have happily taken my spot in the 1st, 2nd, and 3rd Grade Class I was in last year. Michael's class is no longer next door, but we (he and I!) no longer need him to be so close. Thomas is across the hall, which is nice. The three of us see each other briefly throughout most days.

"Oh yeah, the Pruncziks had an anniversary" We love you more than we let on. Congratulations on thirty-one years together! May this year be your best yet! It is also "almost the 18th"...

"Week-end" On the week-end, Thomas and Michael watch all the Power Ranger episodes recorded during the school days, and are able to play some video games. Makes me wonder what day Monday Michelle moved to.
I try to limit my sentences to things that a majority will comprehend, but then sometimes it must be for only one or a few.

"September Eleventh" Unfortunately, we all comprehend this one.

"Mike's birthday" Thank God for Michael Joseph!

"Emmy's Day" God bless cousin JulieAnn and her family in California! (This -the 16th- is also Michael Patrick's anniversary of Baptism.)

"Almost September 28th and 29th" The 28th is my Moms' birthday. She doesn't seem like a heart patient to me. She is doing well. It is also Joseph Luke's birthday. Special prayers for his Mom and sister, Grandparents and loved ones. We ache with you.

September 29th is when we LIGHT THE NIGHT with illuminated balloons to honor and remember those with blood cancers and to raise money to help those families in imeasurable need. It is going to be quite fun. I only wish I had raised more money!

There would be nothing else on the calendar for now. I can only do one day at a time, and until "After September 29th" arrives, I'm gratefully living "Almost September 28th and 29th".
I hope you too enjoy this day.

Tuesday, August 7, 2007 3:51 PM CDT

Michael Patrick is doing well.
He turned SIX on Saturday! He had some friends over to help him eat a Shrek cake. They played Pin the Tail on Donkey, Candyland DVD, but the most fun was just playing with balloons. There were alot of balloons.
It was a great day. Thanks to Matthew's Mom, I have a photo to share. I'm only posting the one of Michael and the cake, for one reason: to follow last year's photo, and the other reason is that I didn't get permission to post the children!

I did get permission from Rachel to post her family photo. Yes, our chaplain from Fifty-One now has a family! Best wishes!

Michael saw Doctor Martin yesterday. Just as we suspected, he is doing well. I keep saying it, and it may get repetitive, but it never gets old. We are so happy he is doing well. His heart, his lungs, all his labwork, and his overall health are great. I tell you what, remission rules! He has even done some growing. Not an easy task for my young ones (pronounced yung-uns) In my family we grow late, and grow up later.

Speaking of growing up, we got to see Ashley!! She's on the adult floor. It was great to see her. She reminded Michael Patrick about their friendship. The way she reassured him that they are "still good friends" was very sweet. I thought I might cry for a moment there. She's a wonderful young lady with a wonderful spirit. Of course those who know her already know that. I hope she'll give her Mom a hug for us, and then eat and gain strength!

Thanks for checking in and praying for our family and those who share the journey.
May you be blessed!

Thursday, August 2, 2007 10:39 AM CDT

Michael Patrick is doing well.

I don't really have any update, but I thought I'd keep you from wondering...

Michael and Thomas spent most of yesterday playing Mario Party, a video game I find far my appropriate than the Lego Star Wars they love so much. It was refreshing. Throughout the day, Joey, Amber, and Jewel joined them. I'm glad there are some games made for up to four players.

August is here, and I could feel a difference. Thoughts really do turn to school, even if only of people we know from school. I'm interested to see what this new year will bring. Joey's a Senior, Jewel's an upperclassman - hers is the first class able to go four years at her school, though this year they will have their first graduating class. Thomas and Michael will have a new principal, to join their new assistant principal (who started in the Spring). There will also be a new secretary, and a teacher or two, and many more students. I am hoping to get invited back this year too.
It is very nice not to feel like I need to be there with Michael Patrick! He doesn't need me on campus anymore. It is a job I love doing though, so I'm checking the mail...

It's all good!

Monday, July 23, 2007 7:46 AM CDT

Little Michael Patrick is doing very well.
He misses his Buddy, Joey since he's been on a little vacation with his girlfriend, Jaime. They are due back in town any time now.
Cousin Amber has been vacationing here with us, and that has been nice. We brought her back from Charleston when we went. It's so cool for me to use the word "girls". Those two are enjoying every minute of their time together. Amber loves going to Carowinds, so we are doing alot of that, including today. We're trying to round up a friend or two to join us.

Congratulations to our Duke Chaplain from 5100, Rachel, and her husband, Garin, on the birth of baby Isaac. I'm happy to report the family is doing well. I hope to post a photo of them soon.

For now, I must start my Summer Monday, making sure these children have some FUN!

Blessings!

Friday, July 13, 2007

I'm a happy human right about now. Michael Patrick is doing well, and that is about the greatest thing ever, to be sure.
Meanwhile, I'm all but giddy with many little tidbits of news. None of it is mine to share with you, really though. Those of you reading either already know or wouldn't be interested, so, ever-so briefly: I've seen a nice summary, done some catching up, and the words "I'm doing OK" have never been so beautiful to see! Short hair is heartwarmingly beautiful too, as is Kate's long hair. Nina's right about how bonds can form and last beyond explanation. It seems like pages overlap again and I am enjoying the feeling.

I still hope "no news" is good news. I know more adjustments are being made by families as "new normal"s are being reached. I pray that they have grace under pressure, peace through uncertainty, more joy than pain in watchful moments, more faith than fear, and new happy memories made each day.

Wednesday, June 27, 2007

Vacation Bible School is very fun.

The Amazing Michael Patrick is Great!

I looked at the calendar today to realize that June of 2007 is almost over. In just seventeen days, we will probably sing and do a jig or something to mark TWO YEARS since Thomas had a bone marrow harvest procedure and Michael Patrick had a bone marrow transplant.
Praise be to God!

There's a child on my heart that I've never met, or even seen a CaringBridge site for. I know she has ALL and there is talk of transplnat for her. It could be any number of things that make her special to me. Maybe even her name. It matches the Queen of our Duke families' hearts. When I found out her parents' names, I almost cried, but laughed at the irony instead. Like I said, I do not know them, but they are out of their town, and in mine, within walking distance of VBS! My heart is being tugged toward them and I am unsure of what to do without intruding. I've left my phone number, so now I wait.

Meanwhile...Most of you already pray regularly for others in similar situations, and I feel that if you include them in your prayers (you are probably already saying all of their names - though I don't know the sibs' name), then it will not be intrusive at all. I cannot think of any better gift than prayer anyway.

By the way, we can never thank you enough for the prayers you've said for us. Please know we appreciate it and I sometimes add "those who pray for us" to mine.
Pretty cool, I think.
Blessings,
Jean

Tuesday, June 26, 2007 1:01 AM CDT

Michael Patrick is doing really well, Praise God.
Mike and the family are each well too.

I've been experiencing a sort of writer's block lately.
I found myself including this website information in a note today, and I thought how sad it would be to have nothing current to read for the first time here.
Sometimes I wonder if it is worse to have no update, or to have the medical reason to update. I think it made it easier for me to log onto some sites that haven't been updated in a while. Sure enough, "Mamaw" inspired me! So here I am, for what its worth.

Michael Patrick is enjoying the days without school. He was enjoying "no pressure to bathe on time" a little too much for a while there! I had to force him into the tub finally. He fought it every step of the way -- from downstairs! Of course, in typical boy style, he was fine once I plopped him into the water, kicks, screams, and all. As I'm typing this, I'm thinking of days he stood in the little tub in 5207 while I washed him without immersing him. Sometimes that was pleasant. Other times not so much. We don't do bed bathing anymore, but he still uses the words "foot bath" and "hand bath" sometimes. It is so nice to have him able to take "real baths" again. Every so often I get very in touch with the joy of that.

Speaking of joy:
The other day I didn't update because it was all I could do not to post Noelle's "priceless" photo on Michael's page! How cool is THAT news! Kickin' AML! You go girl!

Gulp! I guess here's another lesson in enjoying the moment. Taking the good with the bad.
Egad. I just popped onto Noelle's site to see if the photo was still there. It is. Noelle is doing well, and I know those who know her are beyond glad.
There is also sad news:
We've lost Mary Margaret, our beloved Arts for Life teacher. She was such an encouraging leader, and helper of celebrating beauty in all things, especially one's own expression of the good, the bad, and the unthinkable through art.
She'll be missed! "We love you Mary Margaret! Hug those babies for us!" Thank you!

Michael Patrick was pretty proud of his art today. It's Vacation Bible School week here (we're going to the one at the cathedral, since Mrs. Peeples is there). Michael's craft was a baby Moses in a basket! He really had fun. So did Thomas. Even Jewel was seen smiling. She got "volunteered" to help. Today's message was TRUST! It is so good to be reminded.

Trust in the Lord!

Saturday, May 19, 2007 1:57 PM CDT

WOW!

Sirius NASCAR Radio!
Were any of you listening?
So, Michael Patrick and Mom went over to the Sam Bass Gallery to meet with April and Donna from LLS Light The Night. (and Chanda!) There we met Aimee, from Racing For A Reason. She took good care of us, introducing us to many of the behind-the-scenes people, and other guests at the telethon. (including Jen and Hank!) We took it all in and Michael, of course went from clinging to Mom to showing off his Irish dancing, wearing three hats, and charming everyone nearby.
Then, we moved in to the broadcast area. Daniel helped Michael get his headset on for his Sirius Radio experience. It was Dave Moody who interviewed Michael Patrick. Aimee also spoke with them, and then Ray called and they spoke about Racing For A Reason (and Ray J, and I'm thinking "Remission Rules!"). I couldn't hear much of what Ray was saying, but it seemed like Michael could. His facial expressions were priceless. What I was hearing were the comments about how grown-up Michael Patrick seemed as he sat wearing the headset and waiting his cues to speak up. He seemed geniunely interested in the whole thing, although he knows very little about NASCAR or radio. He knows the Leukemia and Lymphoma Society has helped us and other families and doctors though. He's excited to be honored for the Light The Night Walk.
After Michael's moments in the spotlight came more moments. A NASCAR.com camera came over. I think he is going to be on 24/7 today. (I looked and it wasn't there yet).
The crowd changed a bit as Jeff Gordon came in. Then I heard even less of the broadcast, but we did get to meet Jeff and that was beyond cool.
What else can I tell you? Michael Patrick now says he is a NASCAR fan! He and Thomas watched the trucks last night and are all excited about the All Stars today.
The rest of us? Well, we're just grateful.

Friday, May 18, 2007 NASCAR Day!

Michael Patrick about to make his first appearance as the Light The Night's honored patient.
He already thinks he is "famous" because he helped to carry the peace banner at school.
Now he's going to meet and be interviewed by Ray Evernham!
It is NASCAR Day!
Racing for a Reason, Evernham's foundation which supports the Leukemia and Lymphoma Society is going to engage 20 teams for the Light the Night Walks nationally. That is so cool!

It is our understanding that Ray Evernham is going to interview Michael at 5:00PM, and Jeff Gordon afterward!
So, Tune In: Sirius NASCAR Radio, NASCAR.com, and SPEED Channel.


Check out RacingForaReason.org

Tuesday, May 8, 2007 5:55 AM CDT

The walk was lots of fun in spite of a little more light rain than we would have ordered.
We don't really get to "order" things our way, do we? If there's one lesson, perhaps it is that. There are so many though, that it is silly to pretend that's it.
The rain was light and ponchos were provided. Just another way Duke's PBMT Family Support team takes good care of PBMT family.



And, Michael Patrick is doing well.
I'll reflect on the walk, and his recent (minor) issues at a later date.



Have a great day!

Please sponsor Remission Commission!

Michael Patrick is doing very well. We are excited about the walk THIS WEEK-END!!! Looking forward to seeing our Duke staff/family, especially now that we have a personal invitation to 5100! Get the fishin poles ready! ha ha Just kidding, Julie. "Here's web in your eye". Can't wait.


Walk information is also in History below. It is so hard to find a color you can read on this background, but this is a photo of the 2006 Walk. I had to have it here.
Special thanks to our Park Road families, and to Michael's Godparents for sponsoring our team!!

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In case you can read this:
REMISSION COMMISSION walks again!


The Rainbow of Heroes Walk is an annual fundraiser for the Duke Pediatric Bone Marrow transplant Family Support Program. Past and current patients, their families, staff and friends of the PBMT program gather for a day of fun activities, visiting, and walking in honor of all of those involved in the program. Volunteers help in every aspect of this event, including set up, running activities, selling t-shirts, and cleaning up.



You can make a donation at any time by sending a check made payable to Duke University. Please write 07RH in the memo and include if it is in honor or memory of someone or a specific team. Our team name is REMISSION COMMISSION.

and mail it to:

Jane Schroeder
DUMC Box 3350
Durham, NC 27710

An easy way to increase your donation:
To increase your donation, check to see if your company is part of our Company Matching Program. (link below) If you have any questions, please contact us.


Afghan Raffle


Again this year, under the direction of Dr. Kurtzberg, several members of the PBMT team and other volunteers have knitted an afghan to be raffled off at the Rainbow of Heroes Walk. It will be approximately four by six feet. For information or to purchase raffle tickets, contact June Allison at (919) 668-1125. Tickets will also be available for purchase on the day of the Walk. Ticket prices are 1 ticket for $5, 3 tickets for $12, or 40 tickets for $100. You need not be present to win. All proceeds go to the Family Support Program.

We are looking forward to participating and WE APPRECIATE YOUR SPONSORSHIP!!

Thank you!
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PS
This just in! Michael wants you to know that he will be wearing a new "team tee-shirt" made by his classmates. This way his whole class can be part of the walk without being in Durham.

Thursday, April 26, 2007 7:00 PM CDT

REMISSION COMMISSION walks again!


The Rainbow of Heroes Walk is an annual fundraiser for the Duke Pediatric Bone Marrow transplant Family Support Program. Past and current patients, their families, staff and friends of the PBMT program gather for a day of fun activities, visiting, and walking in honor of all of those involved in the program. Volunteers help in every aspect of this event, including set up, running activities, selling t-shirts, and cleaning up.



You can make a donation at any time by sending a check made payable to Duke University. Please write 07RH in the memo and include if it is in honor or memory of someone or a specific team. Our team name is REMISSION COMMISSION.

and mail it to:

Jane Schroeder
DUMC Box 3350
Durham, NC 27710

An easy way to increase your donation:
To increase your donation, check to see if your company is part of our Company Matching Program. (link below) If you have any questions, please contact us.


Afghan Raffle


Again this year, under the direction of Dr. Kurtzberg, several members of the PBMT team and other volunteers have knitted an afghan to be raffled off at the Rainbow of Heroes Walk. It will be approximately four by six feet. For information or to purchase raffle tickets, contact June Allison at (919) 668-1125. Tickets will also be available for purchase on the day of the Walk. Ticket prices are 1 ticket for $5, 3 tickets for $12, or 40 tickets for $100. You need not be present to win. All proceeds go to the Family Support Program.

We are looking forward to participating and WE APPRECIATE YOUR SPONSORSHIP!!

Saturday, April 21, 2007 10:17 PM CDT

Michael is doing really well.
He was one of three children chosen to be in the spotlight for his school's Peace Day/Earth Day Celebration. He and a female kindergarten leukemia survivor carried a PEACE ON EARTH banner while Adrian (the fifth grader we had the blood and marrow drive for) flew the Peace Dove high above everyone.
They were an awesome trio to say the least. It was beautiful. I'm thinking Adrian is kicking Aplastic Anemia's butt! I sure hope so! Grow Cells Grow!

We stopped by Joey's school on the way home to take a picture of the rock because it is currently supporting Virginia Tech folks. Thanks to Sabres JA and AS. (I don't know if we know them)
So, I managed to get a third picture on the photos page. Too bad I forgot how to size it first!!!

It's time gather money for Duke's Pediatric Blood and Marrow Transplant's Family Support Program. Michael Patrick's very own team "Remission Commission" will walk in its second Rainbow Of Heroes Walk! Any amount given will be put to very good use helping families get through an extremely difficult time. The help provides everything from footprint beads, fun, and photo buttons to phone cards, groceries, and lodging. Too much to mention! Queen Maddy's site has a nice summary.
Anyway, our team needs sponsors! We urge you to contact us, or use the link below.

Thanks for checking in. God bless!

Monday, April 2, 2007 11:18 AM CDT

It's all good.
Funny how I don't need to remind myself like I used to.
I was reading a bit about Michael's story here on the site. It is strange to me that it is so simplified! I didn't even mention that he went to Duke's Pediatric Intensive Care Unit before getting his own room. It was there that Mike and I each learned to be patient advocates. By the Grace of God it just happened within us and, though we trusted our team more and more as time passed, we knew there were limits and made them clear.

I couldn't read any more of the story today than I've ever been able to read at one time. I recall the parts that aren't on the page too much to take in more than a few entries. Anyway, I'm rambling and you want to know about our little man, not me. He's great!
He's a healthy, happy, and outgoing child. His transplant was 628 days ago.

The Leukemia & Lymphoma Society shared with us tickets to the Charlotte Checkers vs. Agusta Lynx hockey game yesterday. Oh it was such fun. Michael Patrick really seemed to have more fun than the rest of us. A highlight for him was when he was the one to get the chant started. He tried several times before (and after) that by screaming, "Let's Go Checkers!" and clapping his hands. His little voice just didn't carry through the din of the arena at all. It was good to see his delight when the girls in front of him joined in, then more voices and hands were heard. We ended up on the bigscreen (crowd-cam) a few times. Chubby (the mascot) came to see him, and liked that there was a bear on Michael's shirt like him. Michael was thrilled that Chubby noticed because he selected that shirt for that very reason. (He told me this at the game, before Chubby was near us). Thomas remembered that Chubby had met them before, at Blume's party.

It was Ronald McDonald House night, as well as Blood Cancer Awareness night, so this was made clear before the game started. It was very moving for me to watch The Amazing Michael Patrick as he watched the bigscreen to hear a fellow Leukemia Survivor's story. It is always good for him to know he is not alone.

Spring has sprung!
Tulips are blooming, the wysteria is starting, and everything is beautiful.
Almost as beautiful as remission.

Blessings to you and yours this Holy week!

Tuesday, March 20, 2007 6:11 AM CDT

Michael Patrick wants you to know that he is going to have a good day, and that he has been working hard.

I asked him why today was going to be a good day and he informed me that it was "because every day should be a good day!"

Have a good day!

Sunday, March 18, 2007

The strep infection passed without complication.

Thanks to each of you who leave guestbook entries. We still appreciate getting them.

Michael Patrick went for a checkup on Thursday. It was very nice to see the staff at Blume, including some new additions. We aren't scheduled to go back for a while, so maybe we'll pop in socially in about a month or so.

Michael's transplant nurse from Duke is now a Nurse Practitioner at Blume. How cool is that?!! (It is very cool! We love her!) I remember the day she was shadowing Nurse Debbie (Deb's our all time favorite NP) in preparation to become an NP herself. It was such good news! We had no clue she'd end up here! BONUS!

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She says: "Michael’s labs all look great: WBC 10.9, hemoglobin 13.2, platelets 375, chemistries all normal, liver tests all normal, kidney tests normal. His IgG level was 762."
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Dr. Bryant wants Michael to have vitamin studies next time he is seen. That will be in July! AT DUKE!
Of course he will have been seen socially before that. We are taking Remission Commission up for The 2007 Rainbow of Heroes Walk in May. It is a fundraiser for the Duke Pediatric Blood and Marrow Transplant Program's Family Supprt Program. They are wonderfully helpful to 5200 families.
We would love it if you sponsor our team, join our team, or form one and meet us there! It is such a great cause, and this is their only fundraiser.
The website should be working soon for credit card donations (safe and secure) online. I'll add it to links below soon.

Right now it is all I can do to get an update posted here from time to time. I can't believe that CaringBridge is not a part of every day anymore. Though I still feel the connection to many, I don't check in like I'd like to. Instead, I just keep praying for (Noelle mostly right now, but) all of the folks who are now somehow a part of my heart, and all those who are learning how that can be so. I hate that they "get it" about so much we've learned!
I'm also watching the listings for Morimoto verses Hopkins, so I can pretend Michael Henry is with us as we watch the Iron Chef challenge. (He was really there for the filming as part of his MakeAWish trip).

Though we are really looking forward to our social trip back to Duke, I am afraid Michael Patrick may not remember the names and faces of the wonderful people there. I am coming to terms with this - slowly. Due to his age, it is such a long time since we saw them often. Given the choice of forgetting the people and the physical feelings he experienced, or remembering all of each, I'm glad he is forgetting. There were some pretty bad days! Each one worth it!


Today, which is 613 days post transplant, marks two years since Michael Patrick's eye exam.

Monday, February 26, 2007 1:07 PM CST

Well, we were nearing almost a year without strep throat in the family (meaning Thomas), but guess what?
Michael Patrick has strep throat!

He got a shot, plus he'll take a round of an oral Rx.
The shot hurt, but he handled it well. He is watching Toy Story now.

By the way, it is (Transplant) Day PLUS 593, just in case you're counting.

Saturday, February 24, 2007 10:36 AM CST

I called Michael Patrick downstairs. He told me that he was getting dressed.
I asked him, "What will you wear today?".
He response was:

"Ah-pwo-Pwee-it Clothes!"

I love this kid!

God bless you!

Friday, February 23, 2007 7:08 PM CST

Um, okay, well the truth is that I forgot what I wanted to type here tonight. I spent a long time checking out the new www.Frankiepants.com and "wow"! I am so impressed! It doesn't make me feel better about not being able to make the computer do what I want it to. Anyway, the new look there is great. I love the links page! I wish there was more good news on these pages. Hopefully there will be.

Michael Patrick is doing well. He's into Lego Star Wars video game! He is sad because I won't let him watch the movies. He has quite a little (big) attitude, you know. In the mornings lately he has been telling me that it is not a school day. This started on the 19th, when President's Day was a holiday that turned into a make-up day for our flurry day. It was funny that he said it that day, but it went on all week. Today i told he had just this one more school day before it could be Ashlee's day*. Knowing that made it easier for him to start the day, even though it was a school day. He really loves school; just not getting up to get ready!
*He is very excited about this upcoming birthday party for a classmate. He is going to get to ride a horse! This should be interesting!

Speaking of birthdays, our princess is about to turn 15!
What gifts our children are to this world!

Sunday, February 18, 2007

The blood drive went well. Plus, I think there were about forty people added to the National Bone Marrow Registry. It is so cool that now the typing can be done WITHOUT the use of blood! It just takes four cotton swabs (one at a time, each in a different part of the mouth)!! This testing began in April or May of 2006, if I remember correctly. I hope a match is found for Adrian (though I still hope the meds will work without the need of transplant, as you can imagine).
It was wonderful to meet Adrian's Mom and let her know that some people do well with the tranplant process. I am very grateful that Michael Patrick is one of them.

He is doing well. He has been able to ride the school bus home almost all week last week. He and Thomas love that. (I can't relate.) I miss them on my way home. Though I must admit, it is nice to hear music that is more adult oriented, or better yet: silence!
There was no medical reason he couldn't ride the bus this year. It's just that they usually ride with me. We do enjoy our music together!
We still love the Disney Wishes CD, and Kelsey and Tyler!
We listened to Baron Von Rumblebuss for most of January. I think more of us should know about this North Carolina talent.

All in all, things are going really well for the Amazing Michael Patrick!
We continue to pray for those who share any portion of his journey, and look forward to The Rainbow of Heroes Walk in May!

Sunday, February 11, 2007 4:23 PM CST

Michael Patrick is doing well.
We've enjoyed a disc of photos from the 2006 Rainbow of Heroes Walk. I'm wishing I knew how to share it with you here. I have been challenged with managing photos, but mostly due to the challenge of managing my time.
I still wish I had words for the feelings I get when I spend some time checking sites (of folks we've met along our journey). We haven't forgotten you!!
I guess we just need to keep praying for all of those who make any portion of this journey...

The following article is from our school district web site:

School family begins drive for ill student

While fifth-grader Adrian [I deleted last name] waits for a bone marrow match, staff and parents at Park Road Montessori are helping. They are making sure that he has a variety of donors to fill his temporary need for blood and platelets and his long-term need for bone marrow. On Monday, February 12 from 3 p.m. to 7 p.m. in the school gym, staff and parents will host a blood and bone marrow drive in his honor. Anyone interested in donating blood or testing to see if they could be a bone marrow match are encouraged to participate.

Adrian was diagnosed with aplastic anemia during Thanksgiving break when his mother took him to the hospital for what she thought were ordinary virus symptoms. After careful examination and several tests, doctors delivered the devastating news. Since Thanksgiving, he has had three blood transfusions, seven platelet transfusions, surgery, and now must take 14 pills a day. He has been unable to attend school because his white blood cell count is too low.

We want to make sure that Adrian has as many options as possible for a potential match,” says Myra Little, student services specialist for Park Road Montessori. “Monday’s blood and marrow drive is just a beginning.”

Students and staff are committed to doing all they can to find a bone marrow match for Adrian. Students have encouraged their parents to participate and staff members have taken an active role in the drive as well.

Because Adrian is African-American, finding a match for minority candidates is a particular challenge. According to the African American Community Health Advisory Committee, only about 200,000 potential donors---about six percent---are African Americans. The likelihood of finding a match increases within an individual’s own ethnic group.


We hope that many will turn out here tomorrow, and that many more will donate locally, and be added to the National Bone Marrow Registry...just in case...

Blessings,
j

Thursday, February 1, 2007 7:45 AM CST

It is SNOWING! ! ! It's all good! Michael Patrick is great! It is S N O W I N G ! ! !

This is a big deal here in Carolina, and Michael Patrick is very excited! He was the first child to venture downstairs this morning. I was reading - in VERY good light! - but it was dark enough inside that it was easy to see outside. As he came down the stairs I told him to look out the front door windows. Once he is on the floor he is too short to see the most beautiful view. First it was a gasp, then an "oooo". Then, "You know what that means?". Hardly able to wait for his answer, I said, "What?" as he bounded down the remaining steps, crossed in front of me and made his way to the hearth. Picking up his brand new snow boots from Ms. Virginia, and turning back to face me, he says wide eyed and grinning, "I get to try out these bad boys!"
I gotta tell ya, we can never be too sure of what words will come from this guy's mouth!
He wanted to play Paper Mario while everyone else was sleeping, but we couldn't find the game cartridge. Upstairs we went to see if Jewel was awake, and look out some windows. He told me his homework is to play in the snow. (Thanks, Ms. D.)
I suggested we put snowmen on this page and he agreed and seemed excited enough. First, he wanted to check AJ's site, and before I could finish a guestbook entry, Thomas was awake and the two of them left the computer. So, those are the only quotes I have for you today.

Time to play!
Blessings,
MamaWren

Thursday, February 1, 2007 6:44 AM CST

The main page says that Michael is home and going to school and that is true (except for this snow day thing). It says he gets checked every month. That is no longer true.
He has recovered completely from the transplant (I wish more were as lucky), and his transplant team will see him annually. He is to get checked locally, by his oncologist every three months to assure he is remaining in remission. Last week, I didn't think I could wait that long! Although he is doing really well, (Great!) he complains to me that his back hurts...his legs hurt...his feet hurt...and falls asleep on the way home from school - more than once sleeping through the night! I've been in almost constant contact with his teachers and have pretty much determined that he has figured out how to get Mommy's attention! Okay, so he can't fake the sleeping thing, but he is five and he works hard and plays harder all day. His energy level is never questioned by other adults. Once I told him a few times that I could not carry him if he was in pain, that he had to walk it off or walk to see what happens to the pain next, he mentioned it less and less. A few times he did ask to be held because he just loves me and wanted to be a baby for a bit. I just need him to "get" that he must be completely honest about how his body feels. I don't think I can ever hear certain phrases without being keenly aware that remission, though overflowing with hope, has made me no promise. Nor my brother. Sometimes it is too heavy for my heart. This is just another new normal. In the best moments, I offer the weight to God in honor of Jenna, Bryce and Maddy, and Kameron, and Emma Grace...Then in the same instant I add AJ and Joseph, Frannie, Ketura and those who didn't have cancer, and before I know it I've added those still struggling like Ashley, Kate and Frankie, Jessie, Michael Henry, Terry, and I realize my heart loves so many more children in that second than I can ever name. I wonder about Trevis, and BabyGirl, Harrison, Haley, Greg,...
It makes me sad and hopeful, afraid and encouraged, lonely and connected...small...small; so small in the immeasurable vastness of what is and was and will be.
God has a plan
It's all good
...

Tuesday, January 16, 2007 4:52 PM CST

:0)

Michael Patrick is doing very well.
I just asked him to tell me the best thing about his life right now, and he said:
"I can spell!"
He asked, "Could you add an exclamation point?", and when I did, he said it again, louder with a good bit of enthusiasm.
Yep, that's our Michael!

He is reading many words. He sounds them out so well that he gets almost every one he tries. He is loving this, and so are we. Thomas still likes to say the word first, but we are practicing at giving Michael more of a fighting chance.

He loves school. He's has done some really big works since 2007 began, meaning work that takes a lot time and effort. One such work was research on turtles. Here's what his teacher emailed to me:
I needed to e-mail you again to tell you about Michael's research on the turtle he did today! We read through the story card about the turtle and then he chose which information he wanted to include. He wrote "The Turtle. They eat small plants and insects. They have a strong beak. They hide their legs, tail, and head inside the shell. He sounded this all out phonetically and then made a cover page for his research. Be sure he shows it to you. My favorite is the turtle taking a bath on the cover! He worked so hard!!! I love that he is into spelling!!!

Gotta love it.

God Bless You!

Saturday, December 16, 2006 10:03 AM CST

We love leaves! ;0)

Day Plus 521
Overall, we cannot count as high as our Blessings.

Michael had vaccinations on the 27th, and a check-up on the 8th.
His counts were good, his health was obvious, his gReat mood was infectious.

(I repeat "gweat" to him with the 'w' sound, and he corrects me by saying, "Gweat, with a capital 'R' in it!")

After the check-up Friday the 8th, he got "an elevated temperature" - what I had to say instead of the word "fever" because he insisted he was not sick! He spent the next few days with cold symptoms and fever. Thomas and Joey were also experiencing signs of virus and the four of us missed school on Monday and Tuesday. Wednesday it was back to business as usual.
Michael still has quite a cough, but insists he is not sick. He's only been sick once and that was at Duke!
I miss our Duke family more than ever and find it far too deep to share. (Probably the real reason for lack of updates, as Michael Patrick has never had an uneventful day in his entire life! He is such a joy when he is a joy.)

Peace and Blessings to you.

Sunday, October 22, 2006 11:23 AM CDT

I find myself logging on to this site hoping for an update. Alas, I have to make one myself.
It is not that I don't have enough material. Michael Patrick has days filled with lots of things you would love to read about. I just don't know how to do him justice. Seeing him and (even more so) listening to him is just so cool that I cannot capture it with my words.

He speaks very matter of factly about so many topics. How am I ever going to pick one? There doesn't seem to be any subject he doesn't discuss on a deeply thoughtful level.

I could share some of my thoughts. They'd be about our family and our Duke/Blume/Caringbridge family and how much we think about them each day. How we are praying for Noelle, and waiting to hear about Iron Chefs, and hoping to find Trevis' Mom's email address again, and how I'm going to figure out how to share our photos with you. Plus the excitement of a new Nurse Practitioner in town!

But you are here to read about Michael Patrick.
He is doing well. He has a bit of a cough now, though that is pretty normal for this time of year. We continue to get lessons in how to think of him as "normal" again. Yesterday he fell asleep in the car around 4 PM or so. When he woke up on the couch at 8ish, he was disappointed to learn it was evening, rather than morning. "You mean it's not daytime?" He wanted breakfast, but he settled for one of those corn dogs he practically lives on. (They are really veggie dogs, but he doesn't know this). He was asleep again by ten or so and slept through the night. Is that too much sleep for one day? Would a child without Leukemia be sleeping this much?
It was a busy day, what with going out in the cool air around 9AM and staying out until afternoon. Joey had a drill meet, and he did very well in it. Michael does enjoy watching "the kids march" when he gets a chance.

Thomas was not sick on his birthday this year! No shots or anything! Like the rest of us, he is doing well and enjoying the crispness and beauty of the season.
Happy Autumn!

Sunday, October 15, 2006 11:22 PM CDT

Michael Patrick is great!

The Light the Night walk went very well. It was not exactly what I had imagined, but it was really cool to see how long the line of people was on the sidewalks of Charlotte. The boys and I really enjoyed the entire event, and not just the dipping dots and coffee. ;0)

THANKS to each of you who sponsored Remission Commission!
And THANKS to our team members!

Ms. Jill and I each took a turn carrying Michael for a short while. Mostly, he walked and even ran some of the way. I told him that his Fifty-Two nurses would not be surprised that he could do it! (I think it was two and a half miles) Thomas and Grace each walked the whole way, carrying the team banner together at the finish. (I couldn't see the younger ones at all, so I don't know how they did.) It was great to see Jennifer and Matt!
After the walk, -or after the dipping dots!- Thomas was ready to go, but Michael Patrick wanted to go back into "the bounce house". Instead, we got in the car and cranked up the Michael Patrick Song. It played over and over until they were each sound asleep!

Until then, we had been listening to the Disney Make-A-Wish CD "Wishes" every time we were in the car. Seriously, for a few weeks we've been listening to the same songs over and over (in traffic). I always think of our Duke family, and Norine! (And her family) I've thought of many journal entries I could write, or letters. Twice I've had to remind myself that 7:32AM Eastern is NOT a good time to call anyone, especially in California!

Thanks for checking in and praying for us when you do!

Be Blessed (and notice)!

Thursday, October 5, 2006 10:15 PM CDT

*
"...Miles do not separate our 5200 family..."
*
Michael Patrick's white blood cell count yesterday was 10.6!
(for Meg: LY 32.1% [3.4]// MO 5.4%[0.6]// GR 62.5%[6.6])
ANC 6600 (this means he's able to fight infection well!)
Red blood cell count 4.28
Hgb=12.6; Hct=39.3 (that's for Dave and Meg!)
Platelets 380.
Somehow I always think of Michaelp and Kate in sepcific memory freeze frames when I mention platelets. Mp in the BOPP (anyone know what that really stands for? yes, this is a trick question, but I bet Bobbie knows) Just having some fun thoughts before I tell you why I know MP's numbers.
He IS okay. I wasn't so sure 32 hours ago.

Ask Michael Patrick how he is almost any time of any day and he will answer, "Gwreat". Sometimes he tries to pronounce the R and it sounds like "goo-oo-wait!" Anyway, he has quite the positive attitude. He is doing pretty well.
Lately he has made comments and done things that have gotten Mom and Dad a little concerned. For example, he said he was "too tired" to do a number of things a few days in a row. He said he felt sick (as a matter of fact he said "Duke sick" once), and he agrees that he needed a blood check. He also complained of tenderness on his head RIGHT where one of the tumors used to be. These things were pretty bothersome when combined with bruises on his legs and sick/pale face.
Of course I always wonder if other patient families felt exactly these feelings along with these same thoughts. I ache for them and usually I avoid freaking out by praying for them and turning them and my family over to the care of God. It is hard to be so fearful when I remember that God is in charge, and He can honor my free will by taking over! Life is better when we let go and let God!

Anyway, our boy is enjoying Remission! He probably has a bit of a virus. His immune system is doing its thing! He should be feeling better soon. We'll just push fluids and insist on extra hand washing. (Not "extra" by 5200 standards, but more than what we've grown accustomed to.)

Keep in mind that most folks couldn't tell anything was wrong with the little guy but Dad and Mom knew something wasn't right. I guess this is really good.
Oh, did I just call him a little guy? He's 17.4 kgs! (that's over 38 punds) He's had to move into some more of Thomas'clothes. Again, this is good. I guess It's All Good!

(I have grown to dislike the word "all" though! Especially seeing it in caps! I'm hoping to find a synonym. How's "It's inclusively good!" sound?)

Thanks for checking in and for your prayers.
We continue to keep those we've met because of AML in our hearts...

Peace,
Mike and Jean

Thursday, September 28, 2006

I've added links below for our Light The Night Walk fundraising sites. We are getting pretty excited about it and hope we get lots of donations to benefit The Leukemia & Lymphoma Society...

Michael Patrick still says he is doing "great!"
He was very tired this morning and found it quite a challenge to get to school. Once he was there, his attitude improved. It wasn't until time for him to clear his dinner plate from the table that he said he was "too tired" again.

He is doing well in school and continues to love being with his teachers and classmates. On Tuesday he asked to have a "just jelly sandwich" for lunch so he could sit near Sean, who has a peanut allergy and cannot be near Michael when he brings in his usual PB&J. In true Michael style the sandwich turned into a "Strawberry and grape jelly sandwich". As long as he is eating, it is okay!
This week he and schoolmates got to hear some Native American stories.
He and Thomas sang a song about Indians on the way to school this morning. It was mostly Thomas.
Speaking of songs, Ms. Angie told me that Michael sang The Continent Song to the whole class recently.
Both teachers have commented on the fact that he is far more verbal than they remember from last year.

Things are great, just like Michael Patrick says!



**Remembering Joseph!**

Tuesday, September 19, 2006

We got good news at Blume Clinic on the 8th, and our little Spiderman is doing very well.
Michael Patrick weighed in at 38.9 pounds, and all of his counts were really good. We aren't scheduled to return again for three months. I suspect we'll drop in socially before that.

This week we take step two in vaccinating Michael Patrick as if he was new, since his immune system really is new.
Thomas will also get a shot we postponed when his brother's immune system was too weak to be near anyone who'd been given a live vaccine.

I put up new photos. I'm no Mr. Dave, but at least you get a glimpse of our Make-A-Wish trip. It was far more wonderful than we can convey. The ladies in the photo next to Batman arranged the whole thing, including getting Batman to surprise us as we returned to Charlotte. So cool!

Everyone is doing well here. We're staying busy with school and work. Thomas has homework beyond reading now.
Michael is getting excited about his night time walk! I think he expects our Duke friends to be there, but it is local. We won't have another Rainbow of Heroes Walk until May 5, 2007. This one is Light The Night, where we will carry illuminated balloons - white for Survivors and red for supporters - to raise money for the Leukemia Lymphoma Society. There's a link below for learning more or donating online. I hope you'll give something to this great cause. (Please.) Any amount is appreciated.
Each time Michael Patrick hears the word "Walk" or "Night" he asks if this is the night of the walk. Of course it hasn't been yet, but it will be soon.
We're sticking with our team name of Remission Commission. Some people from school will join us and we are expecting it to be fun and very worthwhile.

Thanks for checking in and understanding that no news is good news. God bless you. We think of our CaringBridge family so very often
with love

(Mike and) Jean

Tuesday, September 12, 2006 GUEST ENTRY

Thanks to Ms. Angie, Michael Patrick's teacher, who sent the following update:

This morning Brennan (Michael's classmate) walked right by our classroom. I thought he may have forgotten where our new classroom was located, so I said his name and asked him where he was going. He turned around with a big smile on his face and just said "But there's Michael". He went to meet Michael half way down the hallway to simply give him a big hug and say hi and then they walked into our room together. Although they see one another every single day, the excitement on their two faces were like those of two friends that hadn't seen each other in years.
Michael brings so much joy and so many smiles to our classroom. When I ask Michael how he's doing each morning, he says "GREAT!" The positive outlook of children- I love it!!! Michael is doing well and often wants to write his mom a story since she is all the way down in the other building. We definitely miss having her close to us, but we are fortunate to see her every day at lunch- still not quite the same as having her next door!

Friday, September 1, 2006 5:20 AM CDT

Happy September!
Things are going well here.
Michael Patrick loves going to school, and has adjusted to his new classroom location, though I am not sure that I have. I'm still working, but we are no longer next door neighbors. I miss seeing him, his classmates, and his teachers throughout the day. We do share most of our lunch time, so that is nice.

Spiderman (at Universal's Islands of Adventure)was so wonderful with Thomas and Michael. I enjoyed listening to Spiderman speaking with everyone visiting him.
What a great bonus for Michael's wish trip.

Not getting to the computer much makes me miss those we met at Duke even more than before. How is that possible?

The Light The Night Walk is approaching, so watch for details here or in a an email. Remission Commission is already listed as a team, so donations to the Leukemia Lymphoma Society can be made online.

Happy September!

Blessings,
Jean, for Mike and the kids too.

Thursday, August 24, 2006 6:12 AM CDT

No news is good news.
Everything is going well here. Remission is a beautiful thing!
Michael Patrick is very excited that today is his Open House Day! Joey and Jewel each had their own. That is a big school they are entering tomorrow.

I haven't checked in with anyone and I really don't like being out of touch with our "Duke Kids" (that means all of the families we've met along the way). I'll be checking in on you Saturday!

Sign the guestbook if you want us to know you are still here from time to time. Many thanks to those of you who have!

Thanks for your prayers!

Monday, August 14, 2006

Things are going really well here. (Excluding the issues of the van and the air conditioning) It has been a great Summer and none of us are quite ready for it to come to an end. Though the drop in temperature has been very welcome, we're not ready for it to be cold.

Our family has much work to do in getting our minds and bodies back into the routine of a school day schedule. Everyone has been staying up way too late and sleeping in far too long. (Excluding Dad; He jumped right back into his work routine upon returning from Florida)

Michael Patrick told me today that he is not ready to go back to school. I was surprised, but then I realized, that’s pretty “normal”!
So, I asked him what he wanted to do instead of going to school and he said, “go … and … vol-un-tee-er … at Give Kids the World.”
I asked how that would go.
“Well, we could volunteer at the castle. Um, we would be kinda like Santa Claus except come there more.”
He obviously underestimates the hard work each volunteer provides, but I like that he thinks of these things. It is nice to imagine him actually getting the chance to go back to the village. I think each of us has hope in that specific possibility. That hope was fueled for me when I met a teen named Moussa who was revisiting the village. He was looking for his star in the Castle of Miracles. It had been placed fifteen months ago.
See, each wish child gets a star on which to write his or her name before leaving it for the Star Fairy. {The short version of the story is that…} The Star Fairy places the star on the ceiling inside of The Castle of Miracles. The star will remain there as a permanent part of The Castle. The wish child is given a “passport” which includes the location of the star so it can be easily found much later. It is very heartwarming, which is no surprise since the entire village is that way.


Keeping good thoughts for Amy’s court date today!

Friday, August 11, 2006

One year ago today, we moved Michael Patick into the apartment in Durham, saying, "Bye-Bye Duke University Medical Center! Seeya in the morning!" ha ha

Now it is Day 393 Post Bone Marrow Transplant!

Remission is a beautiful thing!
Our Make A Wish trip was most excellent! We couldn’t do everything, but we sure enjoyed what we did.
I’ve been struggling for words that do any of our week justice. I don’t know that I’ll ever find them.
“It’s all good!” haha

Michael Patrick turned five without pink buckets and wet washcloths, or mouth care meds, or meds of any sort for that matter. No pumps, no tubes, no ouchies or eye drops! No mask and no confinement!
He spent part of the day with The Power Rangers hugging him and signing his (family) autograph book, then striking poses with him. He was so star-struck that he couldn’t show them any of his moves! The Green Samurai Ranger and the Mystic Force Pink Power Ranger were perfectly willing to help Michael strike a pose. Michael just wasn’t catching on to their signals. The White Dino-Thunder Ranger had to show him a stance for the photo we took by taking Michael’s arms and putting them where they’d look Ranger coolest. We haven’t gotten the photos developed yet, so we’ll have to wait and see how they turn out.
Yes, it was hot in Florida!
Disney was wonderful about giving us special Wish treatment each step of the way! He didn’t have to wait in normal long lines. The characters paid special attention to Michael, and Thomas as they paraded by, much to the puzzlement and dismay of one lady (who’s eyes to turned green) next to us. Minnie Mouse kissed him! That brought more color to Michael’s face than I’ve seen in over a year!
There are far too many details to include, but most of the trip was great or beyond! I feel as though the “Duke Kids” (including teens!) came with us, as they are each still constantly with Mike and me in spirit. I learned that Candy Land and Cinderella are the most moving things for me since Amazing Grace. A part of my heart floods with joy and sorrow upon encountering them, and I cannot endure prolonged exposure…

At Universal, Thomas and Michael each had a chat with Spiderman! Michael had a couple of them.

As parents, it is just good to see your children (including teens!) enjoying themselves.
All in all, I think we experienced more peace and hope and joy than we could have dreamed, and met more remarkable people than you could believe. Not to mention eating more ice cream than any adult should allow. Michael even got tired of it and switched to Icees! He must get that from Dad, for Mike prefers Icee to ice cream any day!
I hope some of you have taken the time to check out the link for Give Kids The World village (http://www.gktw.org). It is an amazing place, and could have been a complete trip in and of itself. THANK YOU to all the volunteers, and anyone who has anything to do with helping to make the Village what it is. What a great idea, Henri!

THANK YOU to each and every person who supports the Make A Wish Foundation as well.
Thanks, Biffa, and Kelly, and Batman too, for meeting us at the airport. In true Disney style, our trip included “one-ups” at least daily, and this one took the cake!

Medically speaking, though Michael Patrick is enjoying good health, there are some serious battles still being faced. Those families remain in our prayers.

Dr. Mogul wants to see Michael in September for a check-up. That’ll be two months from his check-up with Dr. Martin (and his five year old well visit with Dr. Tim).
Uncle Joe is also on the two month check up schedule. His last labs were good. The doctors think they got enough of the cancer out, and are not worried.

Thanks for checking in and for signing our guest book. We love hearing from you, and appreciate your prayers and good thoughts!
God Bless you!

Mike and Jean

Monday, July 31, 2006

Day Plus 382
One year ago today, Michael Patrick was getting a transfusion of platelets around 4 a.m.
I drew blood from his line for the first time. It seemed such a big deal at the time for me to do it rather than watch a nurse do it.
Drawing blood from Michael to send to the lab with Mike would soon become an every day regular thing to do.
One year ago we were looking forward to discharge within days. Instead, once again we were reminded that life is uncertain and the road to recovery is made of ups and downs. Not to mention that the pace on this road goes back and forth between both extremes. I think we saw our little guy go from speeding through the halls of 5100 on a pre-release pass out of 5200 to barely sitting up in his bed without help. It would be almost two weeks before he left the unit. Thank God he has continued to progress and is doing well today!

There were sad events last year that you don’t get to read here. There were happy and hopeful moments that kept us going.
Around a year ago we watched Greg and Ashley each dance their way off the unit; on to brighter days, happily taking confetti parades to new levels of excitement. The picture of health! I was awake thinking of Ashley most of the night, wondering if she’s had a good day lately; hoping and praying for her health to improve once more.
I wonder if Greg is well, and if he still thinks of Duke as “home”, in the way Jewel and I do, like he explained to me in the fish room of the Clinic.
Kate is also coming up on a year from her confetti parade. Yeah!

We think of the children of Duke’s PBMTU every day (and we include Trevis and Jenna from 5100 in this list, and “baby girl”, and some nameless others).
Some are still struggling to get well. Some have lost the need to struggle, finding complete healing only by answering the call home. Some leave us wondering.
We try not to wonder why some do well while others do not. Well, I think we wonder, but try to be okay with never knowing.

We do know that each was given the best of care, by family and staff. Though the road chosen was difficult, being the very best shot at recovery made it the right one.

We remember; we mourn; we pray; we hope.

Sunday, July 30, 2006

Happy Birthday Joey!

A huge “THANK YOU” to HENDRICK Motor Sports!!!

Amber, from Child Life on 5200 called on Wednesday and asked if we were interested and able to go to a baseball game in Kannapolis on Thursday. Five of the six of us were able to go. As for Mike, he was working. Our van is back in the shop again, but this time he was able to use the company van without air conditioning. This had never before been an option. There is a lot of stress around the issues of our van, air conditioning, being able to work and so forth, but this is not really web site material, so back to the subject of the ball game.
We soon found out this was no ordinary local ballgame! USA Baseball had come to little Kannapolis, NC! This is the best of college baseball. It was USA verses Japan in game 3 of a 5 game annual series. USA won. It was a great game to witness. Even more exciting though was the special treatment Michael Patrick received.
Beth, a representative from Hendrick Motor Sports, met us at the gate and we went in with her, as did an 8 year old in remission from (and on maintenance chemo for) ALL (leukemia) and his parents.
We went right down to the field to meet the players. Wow.
Each of the players made a point of greeting him, most shaking his hand and listening carefully to his quiet enthusiasm. They gave him and Austin, the 8 year old guest of honor, each a USA ball cap, and a real jersey! They had number “1” on them. (at least I know Michael Patrick’s does) Then they each SIGNED the jerseys for them!
Austin soon had to go cool off “upstairs”, but we stayed with the team.
Several of the players interacted with Michael in fun ways. One had a race with him and Thomas. One put him on his shoulders a while. (This may have been the same guy; I think it was JP’s shoulders though.) Thomas and Michael sat in the dugout and visited with several of them. It was very hot out, so team member(s?) made sure to get them water. Joey and Jewel and I were enjoying just standing around in the presence of a great baseball team. (Actually two, but we stayed close to the home team) It was fun to watch them make a big deal of the little guys.
We went upstairs to get cold drinks while they warmed up for the game. We were back in time for Michael Patrick to throw out the first pitch! Austin threw the second “first pitch”. It was a great moment among great moments.
As the game was beginning, two USA guys – I think one was named Tommy, along with Austin, Joey, Thomas, and Michael Patrick settled down behind home plate to use the radar gun. The three youngsters each got to hold it and tell Tommy the speed of the pitches.
Jewel and I sat with Austin’s parents near Japan’s dugout on the third base line. The Wren guys joined us for part of the time, but Austin stayed behind home plate for the entire game. Everyone had a great time. There was a fireworks show after the game. Joey had to hold Michael and assure him of his safety. Thomas was with Jewel and me at this point.
It was a great surprise.
Thanks Amber and Duke!
Thanks Beth and Hendrick Motor Sports!
Thanks Eric Campbell, Todd Frazier, and USA Baseball!

ABOUT UNCLE JOE

Uncle Joe, of course is Jean’s brother, known to the skateboarding world as “Crazy Joe”. He’s been battling Lymphoma (before and) alongside of Michael Patrick battling Leukemia. They’ve both been enjoying remission immensely.
On June 30, 2006, Joe had a lump removed from his chest. It was Cancerous. Before that, his bone marrow biopsy was clean and his MRI after that was called clean. They are calling him a Two Time Survivor! They say he is in remission again.
Joe wants his favorite Doctor to look again at the MRI results when he gets back from vacation. This is because he had a CT scan when he told them about the BB sized lump he felt in his chest. It didn’t show up on the scan, but two months later it was the size of a marble. This is what they removed. Now he has a painful growth in his armpit. His last labs were pretty good, and he will have more in two weeks, I think.
Thanks for praying for Michael Patrick and his Uncle Joe.

Monday, July 24, 2006 1:57 PM CDT

Michael Patrick's physical went well and Dr. Tim could find nothing wrong with him. He's a regular kid who does regular kid things. He got three shots Thursday and though his thighs were very sore for a few days, he is great again now. This marks dose one of the complete revaccination process. A huge milestone we are glad to have reached.
Remission is a beautiful thing and I pray that Michael stays in it forever.
My brother Joe will get official word tomorrow that he is no longer in remission, and learn what the doctors plan for him next. They had mentioned that he has had too much chemo to have any more if it came to this. We'll see. Joe is grateful for the prayers that got him through so far, and God's Grace that will see him through whatever comes.

Things are going pretty well here at home!
Joey is about to turn SIXTEEN!
We're getting excited about our upcoming Make-A-Wish trip to have our own little SpiderMan meet Batman and the Power Rangers.

There are (not new, but) different photos again. There are also new links to check out.

Thanks for checking in and praying!

Monday, July 17, 2006 9:26 AM CDT

Michael Patrick is doing well.

It is nice to give him only a vitamin each morning and no other medications whatsoever.
He is scheduled to get his first round of vaccinations later this week.
I plan to use EMLA cream to make it easier on him. I know he will be fine.

In the meantime, we are going to visit with classmates at the school garden(s) and playground.

By the way, it is Day Plus 368 if anyone is still counting.

Friday, July 14, 2006 Happy ReBirth Day!

Day Plus Three Hundred Sixty Five!!!

Michael Patrick had his ONE YEAR studies & physical exam by Dr. Martin on Monday.
Everything looks good! He is doing well. He is normal. He remains in remission and has recovered completely from the transplant.
His echocardiogram, chest x-ray, Pulmonary Functions Tests, physical exam, and lab results were delightful.

The numbers certainly do not mean what they used to mean (which was EVERYTHING!) to us. Here they are, just the same:

• Weight: 17.6 kg. That’s well over 38 pounds!
• Height: 102.5 cm. He has grown!
He has been growing steadily. I think his weight is around the 35th percentile, and his height continues to be right at the 10th percentile. Pretty common for my children at his age, I think.
• White Blood Cell count: 5.7
• Platelet count: 306
• Red Blood Cell Count: 3.77
• Hemoglobin: 12.2
• Hematocrit: 0.34

He is taking no medications.
I feel like I could type “Normal” and “No meds” over and over and it still not sink in. It is a glorious thing.
He will be taking a multi-vitamin for the rest of his life, but shouldn’t each of us anyway?

We enjoyed seeing who we could at Duke, and missed those we couldn’t. If Emily, Daisy, Stacey, and Dr. Beam are reading this, please know you are not forgotten!!
We didn’t get any answer at the “doorbell” of 5200. That was sad but we took it as a sign that we didn’t belong there at the time we arrived. I did get to speak with Frannie’s “Best Buddy” for a few minutes. That was really nice. We hadn’t met before, but had (and still have) a lot of prayers in common for “V” & Jessie & family!

I thought surely we’d get to visit with Miss Ashley, but she had gotten discharged already. We put aside our disappointment and took that as a sign that she is on the right track again.

Trevis looked wonderful! We had a chance to visit a bit while waiting in the waiting room. The real waiting room!

We’ve been enjoying Cousin Amber and Grandma Jo since Monday. They are roller coaster fanatics!

Friday, July 7, 2006

Day plus 358

This may not seem like big news if you’ve never had the “flat hair” argument with Michael Patrick.

Today Michael said, “I love curls now.”
I almost fell over! Ha ha

Things are going well, and we Wrens wish each of you the best. Thanks for checking in.
God bless you!

Monday, July 3, 2006

No news is good news!

Michael Patrick has been enjoying summer. He is able to go outside, and able to go into public places. There’s no school for now, but he is dealing with that okay too.
We have been to Bi-Lo more times than we can count. Each time we are in public, there is a moment when one of us realizes that he is allowed there again. It is quite nice and though we know it, it doesn’t get old to feel it again and again.

Remission is a beautiful thing!

Uncle Joe came to Charlotte last Saturday, and he finally got to see our local skate park. Tuesday, I drove him home & the children came with us. We got to see our newest family member (my brother John’s GRANDdaughter!), Libby. While in town, we may have set a record for the shortest visit to Folly Beach ever. It was a decision based on timing only, but now that I think about it, I don’t think I was ready to let MP into the ocean! I don’t think he has Doctor’s approval for that anyway. Next year!

As for this year, he has lots and lots of independence to celebrate!

Thanks for checking in on our little guy.
Thanks for your prayers for him, us, our Duke “family”, and those who serve our country.
God bless you too!

Friday, June 23, 2006

Okay, I put the photos of FUN at school under the photos of WORK at school (I didn't correct "type-Oh!s" in captions for fear of it making things worse).
Ms. Angie took the school pictures, with exception of the one near the cone in the carpool lane (bottom left). The cropping was messed up by ME, not her! The important thing is that you can tell he is fine and had fun loving school.

This week, he rode his tricycle up and down the street for the first (and second) time(s) ever. It is really hot and humid here, so he is mostly inside tormenting siblings. Thomas moved out of their shared room and now Michael Patrick spends a lot of time in Thomas Edward's room. This cracks me up.

We're looking forward to seeing classmates next week. Plus Uncle Joe is coming to see us. His bone marrow biopsy went well Thursday. He says it took about ten minutes total and he has it recorded. Yikes!

Monday, June 19, 2006

Well, the little champ is having a good day. He got to go to “Dad’s work”, and to Bi-Lo! Today, he and Thomas got their own mini-carts!

Thomas has taught him the symbols of many vehicles, so our trips through town are full of both of their voices calling (sometimes screaming) out the types of cars. There are a lot of Toyotas and Hondas out there! They have learned that the ram is a Dodge, and the horse is on a Mustang, which is a Ford, of course. I like to ask them about the Impala logo while I can stump them. Soon they will remember that one too. We’ve only seen a few in as many weeks. It is a treat for me when we see an Audi, as sometimes only one will remember the real name, including when Joey and Jewel are with us. We each agree it is easy to think of the Olympics when an Audi is around. We still call Volkswagen Beetles “Spud…” (followed by the color and “convertible” if it is). Michael and Thomas each called a red one recently, which is against our Spud rules, and therefore fun for everyone who didn’t call it. All other Volkswagens are called Volkswagens. Thomas got pretty quick with the Spuds for a while there. He knew some driveways and parking spaces to always check as soon as we approached them.

I asked Michael Patrick what to say in his update, and this is his response:

“I just wanted to drop by to say ‘hey’ and ‘I love you’ and ‘I’m up to a lot of fun and games. Right now I am watching PBS Kids and I got the hang of blowing great big bubbles’ and then I want to say, ‘bye, I love you’ last”.
He hopes *all* of his friends see this on his site!

Mr. Dave taught him how to blow chewing gum bubbles. He’s enjoying that almost as much as going to Bi-Lo! (Bi-Lo sells the gum) Now, Michael is teaching Thomas.

About the pictures:
(Thanks to Ms. Angie for campus photography!!)
I tried several times to get the middle and bottom sets to be different! They both changed when I tried to change either one! Oh well. You may notice there are three different captions, but only two different photo sets, so one caption doesn’t make sense. I’ll try again soon…
Meanwhile, it is one of the many things that really do not matter.
Blessings,
Jean - for the Wrens

Saturday, June 17, 2006 mid-day

Wow! Day [Bone Marrow Transplant] Plus 338!

Michael Patrick is “Great!” That’s pronounced like “gooWait”, for those of you who haven’t ever heard him say it. He had a bit of not-so-good day recently, and his answer was, “Almost great”. Now, who thinks to say almost great? He’s quite a kid!

His visit to clinic on Tuesday was not the easiest, but he handled it so very well! I know it was hard for his nurse friends to see the sad face and tears. He usually doesn’t ever cry there, at least not for more than a minute or so. He had to get three sticks before there was enough blood to use for the monthly tests. (I started to say “the many tests”, but then I recalled the amount of tests done for the “studies” every three months at Duke. I think they need seventeen vials for those, so less than five is no big deal.) Like we’ve come to expect of the amazing Michael Patrick, he took it like a champ!
When it was all over, he got to go to the kitchen for a real treat. Since it was Dr. Paulette’s birthday [and she LOVES chocolate!], there were more chocolate items than I’ve ever seen in one place, including the best pudding ever! It didn’t take more than a bite to get him back to his smiley faced self.
He went to school with me and fell asleep on the way home. He slept through the night, with the two exceptions of me checking on him; asking if he wanted up, and giving him his 10 mls of nightly medicines (two teaspoons). He has gotten so good at taking it and going back to sleep, because sometimes he is asleep before 8, or we forget until I remember the dose at 10 or so.

Remission is a beautiful thing.

I’ve recently been reminded that “God has a plan”. I have been assured that He won’t let me mess it up, but will take care of us always. I’m clinging to those thoughts now, perhaps more than ever. You might say “We’ve started a new chapter!” in our story. So many people think that our worst challenge is over. Meanwhile, as a human being, I tend to think the worst challenge is always the current one. Life is difficult, but so worth the effort. Dare I say, “It’s all good!”?

Michael Patrick weighed in at 17.1 kgs. (Around 38 pounds) He is growing a little bit. This is great news. My children have never topped the growth charts anyway, so he may still end up being the bruiser I suspected he’d be from his earliest of days. After all, Joey and Jewel are each taller than me now.
His white blood cell count was 9.9, and I forget the rest. Never thought that would be possible. Ha ha

Ms. Angie sent me some photos of MP at school, so I’ll try to post them soon.

Happy Father’s Day! Especially to the great fathers, and Godfathers in our family. We love you!

Wednesday, June 14, 2006 Day plus 335!

H A P P Y B I R T H D A Y

Great Aunt Mo!

Friday, June 9, 2006 3-4 am

Sorry for the lack of update. Sometimes what fills your time is just not anything you want to share with the Caring world.

As for Michael Patrick, he is doing very well. His last day of school is today, (Friday) the three hundred thirtieth day post bone marrow transplant.
I know already that he is really going to miss his school community. (It is wonderful.)

Wednesday, he got to leave his class and come with me to attend a graduation ceremony for Thomas and his Kindergarten classmates (about a dozen, which is half of his Primary class). These rising First level Lower Elementary students recited poems for us. There was one for every month of the school year, and each was presented to us by two to four students. They did the June poem together, leaving us all in smiles. Then each Kindergarten student chose a Pre-K student and passed on some advice for how to be a good Kindergartener next year. There were plenty of tender, powerful moments. Picnic lunches on the lawn followed, with watermelon and cake for everyone. It was a great celebration.

Thursday, his class had an end-of-the-year celebration. The classmates sang songs for family and friends. We watched a slide show of photos taken throughout the year. It was very moving, and yes, I cried. I couldn’t help it; the first song was ‘Somewhere over the Rainbow”! I guess I’ll never hear that song the same way again. At least it wasn’t the one with “What a Wonderful World” included; that would have really had my tears flowing! That is the one they played for the balloon release at the Rainbow of Heroes Walk. So the slide show was so sweet. The name of a student came up on the screen followed by that child’s photos. It was obvious that this pre-k class recognizes their classmates written names, because they announced each name cheerfully as it appeared. Lots of laughs were shared by the proud audience. It was magical throughout.

Now, since I left the “pants” information on the home page so long, I may as well tell you what happened after I typed it.
When I saw him, I was surprised by the fact that he had on different pants. I can’t say that I was pleased either. He had chosen a pair that really didn’t look good with the shirt he had on. I thought of his wardrobe and noted to myself that the pants don’t really go well with ANY shirts he has, other than the long sleeved one that matches them. It is clearly too hot to ask him to wear long sleeves. He would be miserable in the heat. So, I am thinking all the right things to myself. You know, “He doesn’t have holes in his pants anymore. That is all that was requested. Don’t go getting picky now.” “He likes the pants enough to wear them…” “It doesn’t matter!” All the right things to bring myself to allow him to have this choice accepted.
Yet, I decide that I will get another pair of pants and ask him if he wants to wear them instead. I won’t push him; I’ll just ask him IF he wants to wear the more suitable pair. I do, he does, and so I help him off with his pants. BOTH PAIR! He had slid the pants without holes on OVER the jeans with holes. Whoa! Talk about surprised! I got a good laugh from it and maybe you are too.

Have a great week-end!

Monday, June 5, 2006

Poor silly Michael Patrick thinks it is not a school day. "But, Mah-um" [that's a Southern whine for Mom], "It was just Sunday!", he says. I tried to explain that Monday follows Sunday and he seemed to accept that right before he stated that Sunday and Monday are his school days off. He only has five days to spend with his classmates, and so he does want to go. However, I could not get him to change pants! So, Saturday pants to school today. (??) Hmm, I'm going to go try one more time to convince him holes are not for school wear.

Things are speeding along otherwise.
Have a blessed day!

Saturday, June 3, 2006 AM

Many have asked, and Jewel has chosen Saint Rose as her Patron.

Michael J. called from New York to ask how we are planning to celebrate his mother’s birthday.
We are going to spend some time with children surviving cancer, and their families. The folks at Blume are so wonderful, and we are looking forward to spending time with them outside of the clinic. No syringes, and no meds, but lots of fun, food, and friends! I think Peggy would be pleased. I’ll carry her and our Duke kids in my heart throughout the day (that’s what I do every day; it’ll just be more meaningful today).

Thanks to Blume!
Thanks to:
Cookies by Design
YES Your Event Source
Edy’s
Radio Disney AM1480
Kingsford Charcoal Racing
Presbyterian Hospital foundation

I hear Dr. Gill Getwell will be there, and I can’t wait to see what he looks like! I keep picturing Gil, a Duke Nurse Practitioner. I bet there will be no resemblance whatsoever.

Whatever you do on this third day of June, 2006, I hope you enjoy it somehow. I know it will be the only June 3, 2006 you’ll ever get.
God bless you!

Thursday, June 1, 2006 6:06 AM CDT

Day Plus 322

Happy June! Mike has always liked this little time of the year where every day is the birthday of someone he loves. Happy birthday!
Michael Patrick is doing well.
Jewel is getting confirmed tonight.

Wednesday, May 31, 2006

Happy Birthday Aunt Meg!

Tuesday, May 30, 2006 7:32 AM CDT

Michael Patrick is off to school. He enjoyed having yesterday off, especially the Frisbee game with his Godfather and family. Now he is ready to be back among his classmates getting some good work done. I know the feeling!
Thomas got hit in the face with a trophy yesterday. Trophies are lighter than Bard pumps, but still no fun to have one fall on your face! He’s okay; plenty of platelets.
;0)
Grandma Jo is visiting this week.
It’s all good.

Monday, May 29, 2006 MEMORIAL DAY

Day 319
Michael Patrick is enjoying remission.
I have been unable to find words for an update. Michael Patrick is fine, so do not worry. In case you do not know, he has been signing the guestbook with the help of his teacher. You are welcome to read guestbook entries and leave your own message too.

Let’s take the focus off of us for now and honor our Veterans instead. Thanks!


The following are not my words. Thanks to “Joe” for his thoughts about Memorial Day.
***
There are many of us who had fathers, uncles, brothers, sons or friends die in World War II and Vietnam, and while they will always be remembered in our hearts, their sacrifice deserves to be remembered by our nation more than hamburgers and hot dogs cooked on a grill. There are young men and women who continue to die in Baghdad and other cities in Iraq, as well as Afghanistan, and whether we agree or disagree with he politics that has placed them in harms way, they too deserve to be remembered.
As Americans we have pretty much separated ourselves from the dead, and few of us bother to visit the graves of our loved ones, perhaps, because we are so widely dispersed these days often being thousands of miles from the places where they are buried. But, maybe we need to go back to the origin of this holiday, and visit even the anonymous graves of men and women who have given all for their country, and decorate those graves with flowers or flags or prayers. …
Remember that there is a National Moment of Remembrance at 3:00pm [today]. Take that moment to pray for those men and women, and to thank God for the freedoms that are ours.
***

Saturday, May 27, 2006

It has been an interesting week. I’ll gladly skip the details!
Some good news is that Thomas is not a strep carrier. He had gotten strep throat so many times in the last year that several of us suspected he may just be a carrier and test positive no matter what illness he contacts - or something like that! This week, he tested negative. See that is good, right? He had some sort of virus, and he shared it with us. Michael insisted (after Monday morning) that he is “Not Sick!” He seems to have escaped this round of germs!

Today is day 317 post bone marrow transplant. No need to notice that 3/17 last year was our last day in our life as we knew it. Things change, and sometimes we get hints and signals and sometimes we notice them. Sometimes…

Michael Patrick rode the school bus without his big brother Tuesday and Wednesday mornings. He also got to ride the afternoon bus home (with Thomas) Thursday and Friday. What a blessing that was, as I was unable to get up, never mind drive over to get them.
They both went on a field trip to the Raptor Center and enjoyed it. Michael named several birds he saw including the Bald Eagle, Barn Owl, and Red-Tailed Hawk.
Then he adds “Chicken Eagle, no, um ah Chicken Owl”
“Do you mean chicken hawk?”
“Oh? Yeah!” he grins, “Chicken Hawk” But he had this look, so I’m not sure. Now I know, he probably meant a turkey vulture! I didn’t think of that at the time. We just had fun with it before I shooed him away from me and my germs!

Today is Saturday (or it was, perhaps I should say). I forced myself to get out of the house and I think it was good for us.
Michael Patrick has a bit of a runny nose.
His fingernails got cut again today. I don’t know how in the world he gets his fingernails so dirty so quickly. This has always been a challenge for me, but we sort of took a year off from that worry. If you cannot be near soil, you cannot get dirt under the nails. Then again, I do remember him having lots of “hand baths” in the hospital. We used the pink bucket for letting have a “hand bath” and a “foot bath” pretty often, even during the time he didn’t hate to get into the tub. He would still get food and play-doh under the fingernails. I think they even got dirty from potato chips. Today I asked him if he was crushing Apple Jacks or something. Oh well.
You may think it is silly to go on about such things, but this is me pretending not to think about sad things. “Bittersweet” is such a meaningful word in 2006.
Last night, Michael J and I saw two stars in the sky. Two stars. I only know two people who have their own stars. Hmm
I miss them, and in doing so I find myself missing the whole long list of ‘em.

Thanks to Duke PBMT Family Support for sending us the walk collage! I will try to find a way to post it for everyone to see. For those of you who got it and didn’t see my little guy, he is to the right of the big check. The red shirt and red hat are on my boy. It is a fine example of one of those “if you didn’t know, you wouldn’t know” kind of photos. Ha ha

Tuesday, May 23, 2006 5:50 AM CDT

This weekend, Michael Patrick spent some time with his Mr. Dave and Mrs. Virginia. He loves doing that (without the family around). As you can see above, he learned about mowing.
Mrs. Virginia told me she would give him earplugs so he could hear the band practice up close(they are good!), and from the note under the new picture collage, he played some too.

Thomas didn't get to visit because he was sick, so he hopes to have a visit soon too. We'll play that "by ear".

We appreciate continued prayers. God will sort out the details.

Locals: the intentions of the 12:10 PM Mass at St. Peter's uptown on Thursday are for the Bryce Anderson family.

Saturday, May 20, 2006 1:45 AM CDT

Still feels like Friday to me. May 19th

I’ve just been outside looking up at the sky. When I looked just above the horizon as I normally do, the sky just seemed to be one color, sort of a grayish white. There was a certain glow about it and it made me tip my head. Straight up; wow; I noticed a deep blue and purple in the darkness, and bright fluffy clouds so delicately floating along as if … well, as if making designs just for me. The first thing I noticed looked like an angel blasting a horn, perhaps in jubilant celebration, a welcome, or an announcement. It wasn’t an angel shaped cloud. That wouldn’t have startled me with delight. It was actually the outline and in between spaces of some clouds; the Sky peeping through. As if a child had drawn it in icing before licking her finger with a giggle. It was sweet! I wished I could capture it on film, for even having seen it firsthand, my own words do not create the spectacular sight. I soaked it in and felt the excitement of what the music must be like.
Before I could think the word “camera” the angel began to expand. It was then that I noticed the clouds had started to move so much. I felt only the slightest hint of wind; perhaps more with my eyes than my face. As I watched, thinking I would see nothing other than bright billowy clouds and beautiful darkness, the spaces between (different) clouds revealed Sky, and just as I thought, “I can’t believe it! There is a single star tonight!” How appropriate. The continuous movement of clouds let a little more sky be seen. Sure enough, there are two stars up there! I couldn’t wait to share this. You see, I know the name of one star out there. It is “Sky Dancer”, named in honor and (as of Friday morning) memory of Jenna, who had told her Mom that when she grew up she was going to be a sky dancer. Many of you know there is another star out there, named in honor and memory of Joseph. I think it marvelous that in the whole of the sky within my view at 2 in the morning, I saw two stars.

Sometimes the best things in life are things we just decide to delight in noticing.

Thursday, May 18, 2006 7:28 AM CDT

Things are going well for us these days. Mother's Day was nice, and I decided Saturday (& prayed) to offer up every breath I took on Sunday as a loving prayer for each of the mothers who have lost children (in any stage of life). I wrote about it, but not here.
We tried to recall something about Mother's Day last year but it was no use. The only thing I remember is that I hung a photo in a homemade (school made, rather)frame of Thomas in his class garden on the walls of rooms in "Fifty-One" after that.

We've each been pretty busy with our daily activities and I find it harder to update than I ever thought possible. I still know that it has been three hundred eight days since Michael Patrick's bone marrow tranplant. Keeping track of it isn't new, but it is no longer one of the top three thoughts of each day. I guess that is good, but I don't like having to stop and figure it out as often as I do. Again, this is something I didn't think possible, though it is certainly not the most important thing.

We had a good visit at Blume on Tuesday, and it was a lot like a well visit from the old days, but with Dr. Mark instead of Dr. Tim. Well, Michael did have to get two sticks. It was not fun, but he handled it very well, showing that face that fools most folks into thinking he's 100 percent okay with it all. Still yet another chance to prove what a good patient he is.

Uncle Joe got good news Tuesday too. The lumpy lymph node may just be due to fatty- and scar- tissue, not tumor! Cool! He will get a bone marrow biopsy next month.

Of course we continue to think of and pray for our Duke family (of families and staff).
Thanks for checking in, and for signing in too. Without you signing in, we wonder who is still out there. Ya know?
God bless you!

Jenna, we love you!

Saturday, May 13, 2006

The new center photo is Dad¡¦s personal favorite! He thought he had given Dr. Martin his only copy, but Jewel had stashed one away after taking it to school with her in August. (Phew! Ha ha )
This was Michael in very early August, 2005. This photo is one that represents the harsh reality well, yet captures one of the better moments just the same. The ¡§pink bucket¡¨, as we came to call it, was part of every hour that week (and several other days throughout the year!). The cool, wet washcloth on his head was there in hopes of comforting him through one of his fevers. He¡¦s wearing a white tee-shirt. The one I remember him wearing when he stood on the steps in front of Duke Hospital with his siblings to pose for a different photo. In that one, it was hard to tell where his shirt ended and his skin began because he was SO very pale at the time (maybe 1 year ago). Now it is hard to tell what is the shirt, sheet, pillowcase, or washcloth!
As I look at the photos in the border again, I realize what a good job Dave did of finding the happiest faces.

Now for current information:
Michael Patrick went fishing for the first time yesterday! Mrs. Clay helped him by putting a worm on the hook, and showing him how to hold the cane pole. Soon, the bobber jiggled and went under water. Next thing you know, Michael pulled out a catfish! It was great fun! Thomas had a chance to get the feel of catching the fish over while the boys waited for help removing the fish from the hook. Of course it was released, and Michael hopes to go back and try to catch it again!
It was quite a moving experience (as are most for me these days) to see our little guy down at the creek in muddy shoes and pants, with a grin across his dirt smudged cheeks. Funny how it was only a few months ago that he was allowed to even be near dirt again. Thomas remained very clean throughout the festivities. ļ

Joey has recovered from the eye injury he sustained last Saturday afternoon. He was not happy having to omit sports for a week, but other than that, he is fine.

Friday, May 12, 2006 7:43 AM CDT

Day 302 Post Transplant!

I've read good things in Ashley's guestbook. I'm grateful for her friends for that and for continued prayers for her.

The walk went well, and the only thing I would change (other than raising more money - next year!) if I could would be to spend more time visiting. It seems like I only got to say hello to those I saw. I totally missed some who were there too. Anyway, it was great. Thanks again to all of you who made it successful!

Michael Patrick is enjoying school and making so many friends. He loves it. I am extremely grateful that Linda has given me the opportunity to spend my days within the school community. It is more answered prayer.
He feels good and looks good, and is "oh so sweet", except when he's not!


Uncle Joe had a CT scan on the 10th and has an appointment to discuss results on Tuesday. Michael will be checked Tuesday too, so maybe I'll share some numbers, just for fun.

God has a plan.
It's all good!

Monday, May 8, 2006 7:06 PM CDT

We are praying for Ashley! She wasn’t feeling well enough to attend the walk. I cannot go into details, but I do know that our friend Ashley is in dire need of prayer right now, so you are welcome to join in with us.

The walk was great! The day was beautiful and the sky was speckled with colorful shrinking dots as balloons were released after the walk. Each balloon was marked with the name of a PBMT patient. Then someone cut loose the “Rainbow” of balloons and it actually looked like a real rainbow as it floated away. Tears and smiles were plentiful throughout the day. I think the best word to describe it all is “bittersweet”!
Lots of money was raised for the Family Support Program on the PBMTU.
THANK YOU to those of you who supported Remission Commission in any way!

Monday, May 1, 2006 GUEST Entry

Hello to all of Michael's family and friends,

Michael is such a wonderful student at Park Road Montessori. He has not even been here for a month yet, but you would think he's been here for years. The children, Ms. Pauline, and I were so excited to hear the great news that Michael would be joining us this year. He walked into the classroom on his first day with two thumbs up and was all smiles! He was ready to meet his new friends and learn new things!

Michael is in fact "learning" in school :) However, he already came to school knowing the difference between an ellipsoid and ovoid. wow!!! He is lucky to have a big brother who is an experienced Montessori student. He loves writing stories using the letter box and of course drawing pictures for mom. He is very fascinated with our bead cabinet, which holds different colored chains to teach skip counting. He's already completed the 100 chain! Way to go Michael!

Although Michael hasn't been with us for a long time, he has already taught the others some things...such as good or I should say "great" manners! He's such a great role model as he always says "excuse me", "please", "thank you", etc. He has also informed me that it is "sunblock" that I put on him before he goes outside. It is definitely not "sunscreen" as he continues to remind me when I forget. "Um, Ms. Angie I think you mean sunblock."

Michael is an absolute joy to have with us. I was told that Michael gave some encouraging words to our own Ms. Delores, an assistant at Park Road who was diagnosed with cancer this year. She came to visit the school last week and took off her wig to show Michael. From what I hear, Michael reassured her that her hair would grow back soon as he pointed to his own hair and gave her a big hug!


Have a great day,

Ms. Angie (Michael's teacher)

Saturday, April 29, 2006 8:58 AM CDT

It is springtime!
For many young Catholics, it is time for First Eucharist, or First Holy Communion.
(“Eucharist”: the sacrament of the Body and Blood of Jesus; the Mass)
(“sacrament”: an outward sign, instituted by Jesus Christ that gives a special grace)
Receiving this Sacrament for the first time is cause for great celebration, as it joins the youngster with Jesus in a special way.
We would like to wish all of our cousins and friends a very blessed and happy week-end as these celebrations are enjoyed.
We wish we could be there for each of you, so we will hold you in prayer in a special way instead. God bless you, and congratulations!

Michael Patrick is feeling so much better! He is back to being pretty much his old self, although his appetite is still very weak. I catch myself hoping that Kate and Frankie may be eating something when Michael won’t finish what he has. His weight was down to 15.7 kg (in the 34 pound range) on the scale at the Blume Clinic earlier this week.

Have a lovely week-end!

Friday, April 28, 2006 7:42 AM CDT

Day 287

Michael Patrick is ON the SCHOOL B U S !!

I got the camera before we headed out the back door, but as we were starting down the steps, I heard the bus coming towards our stop! I put the camera down and picked Michael up. We rushed down the driveway with Thomas so Mr. J- could see us, and wait. He’s very good about not rushing us when he arrives a little earlier than usual. He is also used to no one being there recently, so I knew we had to be seen. My point is that I didn’t have time to take a picture like we did for the first day Thomas rode the bus.
This really isn’t Michael’s first trip on a school bus. He rode to school with the Webb boys one day when I had gone for orientation. It was hard for me to tell if he was more excited about the bus or the boys! Today, it is all about the bus!

Have a great day!

Wednesday, April 26, 2006 4:55 PM CDT

Day Plus 286
Thank you for your extra prayers recently.
Michael Patrick has an ear infection! I have never spread such news so joyfully.
We never had a real answer to why he spiked a fever last Tuesday, and that was a little bothersome.
I really didn’t know how to update the site, plus I wasn’t feeling all that well myself. Six of the six of us have had “bug” symptoms.

Dr. Bryant and Dr. Mogul both looked at Michael’s ears and they believe he has an ear infection that has been partially treated (with rocephin; last Tuesday).
I’m glad I brought him in to see them. Dr. Bryant said that it would have proceeded to worsen, causing big trouble over the week-end if it hadn’t been detected.

Michael Patrick will return to school in the morning, with me. I have been blessed with the honor and privilege of joining the staff at his school. Today was my third day as an assistant.



Guestbook reply:
The song you hear (Thanks, AB!) is Michael’s “Song of Love”. The lyrics and vocals are by Carl Allocco, and it is produced by the Songs Of Love Foundation.
http://www.songsoflove.org
If anyone is interested in purchasing a copy, please email us at the address below, so we can work out details.

Our current fundraiser is The Rainbow of Heroes Walk and it is less than two weeks away. It is to benefit the great Family Support program on the unit, a very worthy cause. You may sponsor our team, Remission Commission by credit card at the link below, or skip directly to http://www.cancer.duke.edu/pbmt/rainbows/donate. I just found out that in order to be eligible to win one of the top three fundraising prizes, our team’s online donations must be received by noon on Thursday, May 4. Also, if you have a check in the mail that we are not yet aware of, please check in with us soon to assure we do not miss it. Thank you!

Oh yeah! Michael Patrick got to go to Blume *and* Bi-Lo today! Two of his favorite places on Earth!

Blessings!

Monday, April 24, 2006 5:42 PM CDT

Happy Birthday!

Day Plus 284!
Thomas and Michael went to school today, but neither of them are feeling "100%". I ended up bringing them home about an hour early.

We have this stomach bug running through our family. It isn't anything Cancer related and it isn't anything Transplant related. It is a normal illness. We are not going to panic, and neither should you worry. So, as they say, "this too shall pass". "It's normal."

Blessings!

Friday, April 21, 2006 8:39 PM CDT

Day Plus 281

Well, I am a little behind in current news. Funny how when things start happening there isn’t as much free time for updates.
First, let me assure you that Michael Patrick is okay!
On Tuesday, I got an FYI e-mail from Michael’s teacher stating that he didn’t eat much lunch. I am very impressed with his teacher, and consider Michael lucky for being in her class. He didn’t fall asleep in the car on the way home like he usually does, but he didn’t want a snack either. (Hmm?)
When we got home, he seemed okay; just tired from a long day with no nap (I later learned he did have a real nap during class rest time). As I was passing by the couch where he was, I ran my fingers through his curls –oo I mean hair! He doesn’t like to admit it is ever curly! –he felt hot. Really hot! I reflected on the fact that Dr. Martin had raised his “Emergency Room temperature” from 101 to 102 degrees during the visit on April 3rd. When I took the thermometer out of his mouth I said “This can’t be right” and took it again. I didn’t get the same 102.7 reading. Instead it read 103.3! Y I K E S! ! !

Okay, while I tried not to panic, I told Mike and proceeded to take the temp again: 102.9! Okay, close to “unbelievably too high” is still way too high. Mike started making the phone calls while all I could do was remind myself, “We knew this was expected and I shouldn’t panic! We’ll be taking him in, but I shouldn’t panic.” I threw some pajamas and toothbrushes into a bag. We went to the Pediatric Emergency Room, and things went pretty well.
{There were only two disappointments; the largest being that Michael’s local doctor wasn’t notified! I thought he had been consulted early on and was expecting a second call after lab results were in from the blood tests; after all, it is his hospital! Hindsight is 20/20, and I think we know better now. We’ll skip the ER and go upstairs to the children’s floor.}
You may remember that Michael Patrick no longer has a central line. That means that he has to get poked with a needle for labs and IV purposes. The nurse who did that was great! First she put on numbing gel on the backs of both hands and the crease of one arm & gave it enough time to take effect. I was impressed that she did all three areas. If the first one didn’t work, we would not have to wait to numb a new area. I was more impressed that she was the one using the needle, and she only needed ONE attempt to stick him properly. Some of you may think I am easily impressed, but others know this is indeed a great thing.

Michael Patrick watched Peter Pan and (quite a bit of) Dumbo (before asking me to hold him, and falling asleep in my lap, watching). After that there was enough time for a few Bugs Bunny cartoons and then he was released. During this movie viewing we learned:
• His White Blood Cell count was 11something; the highest I’ve ever known his to be, (still not above normal average)
• He does not have the flu. Cultures take 24 hours or longer for results, but we have not heard any concerns about results
• Sick kids are pretty pitiful in general, and it is pretty hard to watch while your own doesn’t feel good enough for a Popsicle.
• Emergency Room visits never take less than three hours, usually four. Of course you already knew that one too.
• Normal kids get normal sicknesses.

Michael says, "I might want to be a nurse or doctor when I grow up". This is the first I've heard him ponder this possibility, and i imagine Uncle Joe would be proud and not surprised a bit. "Or an ASTRONAUT!", he adds, jumping enthusiastically. Now that one I've heard a Lot!
My little joke is that I’ll be happy if he grows up to run the Tilt-A-Whirl!

Monday, April 17, 2006 1:22 PM CDT

Day Plus 277


Michael loves school!
He has gone to Bi-Lo three times! This grocery store is possibly his very favorite place to go on Earth, and the one public place he may have missed the most. Sometimes it is a toss up between Bi-Lo and Church! He's gone on Sunday twice now, and I can just tell he is glad to be there. He has also gone to the library and the mall, and a few other stores he didn't like that much. With freedom comes responsibility, right?

It is amazing to think that he can do all of these things after being so conditioned to avoid them so strictly. We are adjusting well.

His chest is still red, but healing quite nicely. It is SO very nice that he needs no dressings now. He no longer even needs a bandaid. Well, unless he sees a cool one. ha ha

There are new photos!

Thursday, April 13, 2006 10:42 AM CDT

Michael Patrick's nine month post transplant studies show that his body has greater than ninety-eight percent donor cells.
He now has the same blood type as Thomas Edward.

Tuesday, April 11, 2006 6:23 AM CDT

Over the week-end, Michael Patrick had told me that one of the best things about his school was that he "Didn't even have to learn anything!". Needless to say, he was grinning. He's grinning a lot these days!
Yesterday, he corrected the information, explaining that he has to learn to be quiet again and again! Then when I asked about more learning, he said FIRST I have to learn to be quiet. I guess we've discovered his latest challenge! This is beyond-words-great.
Today's excitement is that he'll have a lesson on the tape square! Whatever that means. hee hee

Monday, April 10, 2006 9:03 AM CDT

Day 270 Post Transplant!

You should have seen it. Thomas walked Michael Patrick to class this morning. They have both been very excited about this. It was so cute! Their backpacks were loaded, especially MP's Spiderman one. (It's really Thomas', but Thomas uses the Fantastic Four one these days.)
Michael says today is a special day because he gets to use Joey's towel to take a "west" at naptime. He may even get to wear his Batman slippers. He has a very cool class.

I am dealing with leaving him pretty well. Although it may not seem like it to the office staff, I think Nurse Practitioner Debbie would be proud. Ha ha. He will spend the whole school day unless he makes it clear that he shouldn't. They will let me know if that happens, but the chance of it is very slim. The only thing he had trouble with on Thursday was being in the loud cafeteria, and his classmates who bring a lunch actually eat in the classroom. Oh how things work out!
The "signs" have been everywhere for some time now (pointing to this school), and lately they are almost Neon with extra arrows flashing! Ha ha My point is that I know this school is the right community!

Have a fabulous day, knowing Michael Patrick will!

9:33 AM CDT
It is with a heavy heart and flowing tears that I request even more extra prayers for the Andersons now. I just logged on to Bryce's web site, not at all expecting to see an update. Unfortunately there is one, and sadly we must add Bryce to the already too long list of children who haven't survived the journey to health. Though Bryce's healing has been made perfect, and God welcomes him home, our hearts are aching.

Sunday, April 9, 2006 4:21 PM CDT

Day Plus 269. Everything is fine!
There is so much to tell. It seems like each day has brought new news. “Actually”, it is just a new way to enjoy the news we got on Monday.
I didn’t mention it here in the journal because I still feel a bit like someone will pinch me awake, but it is very real. Dr. Martin told Michael Patrick to take off his mask and go to school and be normal! He told Mike and me that Michael would get sick and go see his pediatrician, and it is okay.
The week seemed to go quickly, but I guess I was just busier than usual. WOW! We got home on Wednesday afternoon, and had some nice family time with Grandma Jo and the siblings. Michael had some Motrin for the discomfort at his site (well, he says Actually, it isn’t a site anymore, but where the site USED to be!).
He slept through bus stop time on Thursday morning, and felt a bit nauseous for a while after getting up. I gave him “a melty med”, which is a Zofran / Ondansetron that melts away quickly. Those give good relief without a lot of side effect, so I am glad I had it to give him.
When he felt better we began to get ready to go to school! Michael met with his principal and they had a great chat. Then she walked with him, and Grandma Jo, and me to his classroom. All of his classmates were sitting in a circle, so Michael simply joined them, taking a spot next to Ms. Angie as if he had been doing it for years. The class has a great handshake thing they do, so he got to hear (or almost hear) each child state their own name and the name of the next classmate in the circle. I was already fighting tears, but I did it well. It was lovely! He went with the class to the auditorium for pictures, and to the gym for PE, then back to class to work a while before lunch. He wasn’t really ready to go after he ate lunch in the classroom, especially knowing his classmates would be going outside. His body must have been ready though because he fell asleep pretty quickly once the car was going.
On Friday, he spent the whole day at school! He loves it, and is looking forward to going back tomorrow.
Today’s big news is that he got to go to Church! He was sad that he couldn’t see Jack and other previous classmates at Sunday school. We’ll have to catch up with him (and Blake!) in some other way soon.
I’m out of time here, but there are new photos.

Wednesday, April 5, 2006 12:25 AM CDT

Still Day Plus 265.

We have arrived safely at Home home, here in Charlotte.
The surgery went very well this morning, and Michael Patrick feels “Good”.
After a gwape popsicle and a short amount of recovery time, and stickers, he requested a snack before leaving the North Pavillion. I guess you could say our morning was all that and a bag of chips.
He munched on the chips as we drove out of town. He had a great little nap and then had chicken nuggets and Sprite for lunch from CookOut when he woke up. It is true that CookOut has great shakes. We just heard this yesterday. Thanks Deb! By the time he finished eating, we were almost home.

Right now, Michael Patrick is playing a video game (Super Smash Brothers) and enjoying the feel of being lineless. He may need a second dose of Ibuprofen this evening, but he says he is finished with the ice bag. He will let us know if he has any discomfort, but we don’t really expect any.

It is so very good!

Wednesday, April 5, 2006 7:17 AM EDT

Day plus 265!

Did you notice at three seconds after 01:02 AM that the time and date were 01:02:03;04/05/06? That was news in the Triangle. I love stuff like that.
That was about four to five hours after I flushed Michael Patrick's line for the last time. Can you tell we are happy it is coming out? We are!

So we're off to Duke's Ambulatory Surgery Center at the North Pavillion. It's a two block walk, but at Duke it doesn't feel like it. Not in the morning anyway, and not if everyone uses their own feet. ha ha We'll probably carry MP back to the car to go home.

We're praying for all of our usual Duke families, with a special intensity for the Andersons.

Tuesday, April 4, 2006

Let's
partner
with
the Andersons
in prayer
on Bryce's behalf.

Tuesday, April 4, 2006 10:33 AM CDT

Michael Patrick is doing the happy dance today. He's great!
He spent Monday at The McGovern-Davison Children's Health Center (A.K.A. Duke Clinic).
We came up early for nine month post transplant studies. We are only on Day Plus 264, but who's counting up? I'm still counting DOWN to last line removal. Okay, get this, I can do that in hours now, but I won't do that to you, as exciting as it is. Let's just call it very soon! He will have an outpatient surgery on Wednesday morning. We are thrilled to give up dressings and chloraprep! Hello BandAid! (Right, Kate?)

Labs done Monday, April 3, 2006:
White Blood Cell Count: 5.2
Red Blood Cell Count: 3.48 Some standards list that as still a tiny bit "low", but it is higher than last labs, and perfectly acceptable.
Platelet Count: 272.
We have lots of other numbers too, but the bottom line is that every one represents good news. It was cool to hear Ann (Nurse Practitioner) read the lab results with big grins, page after page (there are eight). You might say its all good.
We heard lots of super news and will share that soon. We sort of have to let it sink in for us first.
We had great visits with Dr. Martin, Dr. Burgos, Jayne Cash, Alison and Kate. Plus we got to see some other great people briefly.
Today we have the day "off" so we are planning to visit the gardens and the 5th floor of Duke, and hoping to see more folks. The list of wonderful people here goes on and on. Wish we could see them all!

Have a great day!

Saturday, April 1, 2006 1:50 PM Eastern STANDARD Time

Well, here it is April.
No joke! I guess we must be pushing nine months since Michael Patrick's transplant.
Michael will not give me words for an update so you are stuck with my own thoughts (again). Sorry.
He is doing very well, as are the rest of us.
The kids have been on “Spring Break” this week. I guess they finally found a way to inarguably NOT call it “Easter Break”, but I won't go there.
It was too cold to do much at the beginning, but even after it got quite lovely outside they boys just want to stay inside. Michael is thoroughly enjoying all the Thomas time. He's been home [all day every day for] two weeks because he was sick before break started. How nice it was when I could stop telling them, "Get AWAY from your brother!"! They've really been together nonstop with the exception of only a few hours yesterday. The moments have not all been sweet either. They are siblings to be sure, so a few rounds of battle have woven into the blissful play here and there. I am going to force them both outside in a few minutes. It is too pretty no to! The tulips are still in bloom and the wysteria is budding!

Thomas has been Michael's dressing change buddy a lot in the last two months. Thomas puts on a mask (as do Michael and I) and offers his hand as pain management tool for Michael to squeeze. (The pain is far less than January pain!!!) They talk about what kind of squeeze MP will need to use each time. There's the Clark Kent squeeze, and the Hulk squeeze, and for really intense times there is the Everybody squeeze. Oh how we will miss these moments - in absolute joy that they are gone!
He's wearing the IV300 (adhesive) dressing again now. The skin was getting irritated even under the gauze and Ace. The Ace was bothering him where it touched skin instead of gauze, having come off of the gauze somehow. What really got me to switch back to IV300 (other than supply) was that he was sweating and the whole thing (wrapped around his back and chest) slipped down very low one time (the LAST time). He was really not very occluded at all. I figured that if he is going to be irritated under whatever we put there, we should at least put there what we do not have to be so paranoid about! And adhesive dressings only need to be changed weekly, as opposed to daily! That is unless, of course there's an issue of some sort. Really, I've spent every day since August 11th checking several times to assure that he is "Clamped and occluded". (Probably before that too, but hospital staff was there to check so I wasn’t checking as intensely.) With the adhesives, I check less often. He has gotten very good about telling me if it (whichever kind it is) doesn't feel right, or if he knows it is loose or pulling up, etc. I'm so proud of him for that! Especially since it is not a joyous thing for him to have me deal with it. He understands the importance staying occluded (completely covered) has on his health though. That line goes straight to his heart you know! Okay, I know. I am preoccupied by dressings really, but you may as well know it. Take heart. This too shall pass!

When asked, Michael usually still says he's "fine" or "great" (great with a W sound). Sometimes he says his back is tired when it nears bedtime, or his arm hurts, "a sleepy hurt" upon waking. Maybe his arm was pins and needles "asleep" for all I know. Still, it makes me wonder if he's growing cells or not. Then I wonder, “if he is growing cells, what kind are they?” Remission is a beautiful thing and I never want to take it for granted. I'm just waiting to settle in to a comfortable spot between taking it for granted and being paranoid. I wonder if I ever will, and if it would be better or worse for me to do so. The same is true for the late term effects of chemotherapy. I don't know what they will or will not be, nor to what degree... I can’t do anything about that today. So really, I am still focusing on loving my child through this. Each and every day.

My biggest hope as a Mom, I guess, is that each of my four children will feel as if they are the one I love best. (Often, if not always)

Remember to set your clocks ahead tonight, but please don't tell me you lost an hour of sleep!

PEACE!

Thursday, March 30, 2006 6:15 PM EST

On March 24, 2006, Michael had an eye exam.

Dr. Marshall said that he looks like a different child. This is so true on many levels.
Gone are the blonde locks unable to resist curling. Replaced by thick dark straight hair that he insists I flatten it against his head while it is wet. I guess we are “training” it not to curl this time.
Gone is the baby face of a three year old just beginning to leave toddlerhood. There is maturity in his eyes that is unmatched by far older eyes. His face shows wisdom that years of experience creates, and a playfulness years of experience erodes, if one allows it.
Gone is the swelling of the optic nerves caused from intense pressure! Hip hip hooray! He is in remission and his eyes are normal. He looks like a new kid!

It was so good to see Dr. Marshall! He is the original “Dr. M.” in our journal history. I didn’t have time to ask permission to use his name last year. This year is different. I had time to tell him (in understatement) that we appreciate him. Seems to me like any ophthalmologist would have been able to see there was a problem requiring further medical attention. I’m not so confident that any other would have explained so gently that something was dreadfully wrong,
and call my pediatrician’s office to work out details of having a doctor meet us over at a hospital,
and then come over himself after wrapping up in his office (we had an early morning appointment),
and spoken for us when we knew not what to say to other doctors and nursing staff,
and come back every day while we were there,
and kept Michael’s vision and papilloedema* in check,
and sing to, and comfort baby Michael as he faced strange goings on one after the other, (really, strange folks doing strange things that are only routine to them - at this point)
and stood up for Michael to get needed procedures when other medical professionals took them lightly,
and insisted that the pressure be a factor in determining Life Flight options,
and spoke so very genuinely and expressed true concern for this young boy, and comfort for all of us.
Every day, Dr. Marshall was a part of our journey. Little did we know what a journey it would be. I missed him when we left Hemby.
Dr. Marshall was the first advocate for our child.
We hadn’t yet learned to understand what was best for Michael Patrick and speak in specifics, though we were learning fast! Actually, Michael J. was doing all the learning. He was on the phone with our original (and ever-faithful; still standing by us) brilliant team, while I had the single minded focus of keeping Michael Patrick calm and even delighted from time to time.
While this specialist and that came and went, Dr. Marshall and Dr. “L” (I don’t know if I have permission to use her name) provided a comfort zone in which we could process all that was happening. They stood by us in our days of diagnostics (test after test) as we waited to figure out what type of Cancer was changing our lives, breaking down medical terms and body functions, and caring personally and extraordinarily.


*Papilloedema was the foreign word scribbled on our admission papers (3/18/05) on the blank after “diagnosis”. Someone kindly informed me that it meant “swelling”, and there has to be a diagnosis for admission and this was all we (they) were certain he had. It took six days to find out why he had papilloedema, which of course is the true diagnosis: AML. Today I finally found a definition
Papilledema or Papilloedema : noun. Swelling and protrusion of the blind spot of the eye caused by edema. Called also choked disk.
Of course I had to be sure of the definition of edema: an abnormal excess accumulation of serous fluid…blah blah blah more words we’d only have to look up also...(I did look them up, but I'll spare you).

So, here you are, clued in to a bit of what I've been thinking about this month.

By the way, Michael Patrick is doing well. His only current issue is the irritation that has returned under his dressing (no matter what kind we use), but that will only be for a limited amount of time. I am counting down the days! That may be why I haven't counted up lately. I will soon. We're about a week behind Kate and Ashley.

Blessings!

Wednesday, March 29, 2006 12:27 PM EST

It's all good.

I'm having a little trouble bringing myself to type in an update. When I get to this screen, I spend the time thinking about last year and all of the firsts we encountered. How our little world simply got placed on hold. Our lives have been forever changed and my mind races so fast that I have a hard time sorting out the thoughts I should share. Then I just want to type in a HUG for each and every one of the people who supported us through it all (or any part of it). Then I start to miss our family members and old friends and all the great folks we met at Duke, both staff and patient families. Oh, if only you could see how great he is doing and know how wonderful remission is!

It's all good.

Wednesday, March 22, 2006 11:20 AM CST

It's all good!

Michael Patrick is doing very well.
I asked him what to say to everyone on an update and here are his words:

Tell them "HO HO HO MERRY SPRING!".

So, Merry Spring everyone. It feels more like Winter than the last days of Winter did here.

Tuesday, March 21, 2006 6:39 AM CST

Good morning!

I logged on to update our journal, thinking I could restrain most of my emotion. March has been great, but ever so strange, as we were very busy last year.
Rather than coming directly to our site, I couldn't resist checking in to see if sites were updated for any friends.
I almost fell off of my seat when G R E E N popped up, and low and behold, those beautiful turtles were right there!
WOW! AJ's turtles. The tears started welling up. By the time I finished reading the journal entry I was very glad I was alone. Tears of sadness and Joy cleansed my eyes and heart. Thank you Angie!!!
So, this update will be bumped away pretty soon. I will ask Michael Patrick how he wants to update. Call it a hunch: The turtles are coming! The turtles are coming!

As for an UPDATE:
No news is good news and Michael Patrick is doing very well. The challenge this week is keeping him away from our feverish Thomas. They are so close it is like they are joined at the marrow or something. ha ha

Blessings!

Friday, March 17, 2006 10:18 PM CST

March 17, 2006
There’ll be no blarney spoken here.
This is Michael Patrick’s 365th day as a known Cancer Survivor.
He’s doing very well.
Thanks be to God!

Happy Birthday Cousin Chris! Get well soon!

Wednesday, March 15, 2006 10:00 PM CST

Well, little Mr. Wren was sound asleep before 9:00 PM. It was all he could do to sit up for me to wrap his gauze around his chest after his bath. I can't wrap it with him on his back. With the bandage secure, he put his arms into the sleeves of his "pajamas" with a little help. I had just fastened the back of his Spiderman suit when he began walking (without being told to go to bed) to his bed and I don't even think he had time to close his eyes before he was asleep. He had a full day today, here at home. Funny how that Spiderman suit is conveniently "pajamas" or "day clothes", depending on what time it is when he wants to wear it. Most items are distinctly - and without exception- one OR the other, not both. He reminds us when we lose touch with that.
Anyway, it's all good here.
We could fall deeply into worry about a couple of our friends, but instead we try to remember to say another prayer instead of fretting.
Blessings!

Wednesday, March 15, 2006 9:22 AM

Journal


Day Plus 244

I forgot to use the word NORMAL in the update yesterday. Sorry about that. I still forget that most of you haven’t lived by the numbers. Absolutely, and without a doubt, Michael Patrick is doing well, and all of his quick lab results were in the normal range.

Just for fun: Michael Patrick stayed up way too late last night. Dad said that “this cannot be Michael I see awake in the den because Michael must be asleep in his bed”. Quite the contrary, Michael assured him that is was indeed him by stating, “I am not a clone”.
Laughing inside, we listened as he answered questions, proving he did use the word properly, saying what he meant and meaning what he said. It was funny, but the fact remains that he stayed up way too late for a four year old. So naturally, I insisted he get out of bed this morning in time to take Thomas to the bus stop. It wasn’t warm today either! (Compared to yesterday here in NC) He wanted to be carried home and put in his warm bed, but guess what? We are not going through this again tonight, and certainly not letting it become a habit. So the little fellow must stay up and active today in order to get to bed close to bedtime tonight. This could prove interesting as the day progresses. He may need a nap, and I won’t be totally mean.
Yep! Already, he and Chemo Duck have crawled into my lap.
I read the above to him & he grumbled (yes, the sweet boy Grumbled!) dragging out the words, “This morning was a horrible morning”. I didn’t even hide my laugh as I asked him why. “Because I needed sleep and you wouldn’t let me have any sleep is why”.
Okay, we must get moving somehow now because he is saying, “Would you please let me get some sleep and make no noise”.

I leave you in laughter, if only my own.
Have a blessed day!

RAINBOW of HEROES WALK information

This is the original announcement that was on our front page during February and early March, with the addition of the team name:

**** 6th ANNUAL RAINBOW OF HEROES WALK **** *************************************************************

Saturday, May 6th, 2006 ** Rain or Shine!
A walk to benefit the Duke PBMT Family Support Program

In an effort to give back to a community that was so very supportive during our stay among them, we are going to participate in their annual FUNDRAISER.
We are forming a team and Michael Patrick will choose a team name. We are raising money to present to the Duke Pediatric Blood and Marrow Transplant Family Support Program at the Rainbow of Heroes Walk on May 6, 2006.
You may SPONSOR US in the walk by making a tax deductible contribution of any size. Tax receipts are available upon request.
Cash, checks, and money orders will be accepted locally. Credit card donations may be made on the secure web site (see link below, and select the team “Remission Commission” ). The site also specifies how checks and money orders may be sent directly to Duke.

Make checks payable to DUKE UNIVERSITY, with 06RH in the memo space.

We are looking forward to seeing our PBMT family in a social setting while turning in as much money as we can collect without hounding anyone.
In this way we hope to assure that future families on the transplantation journey also have the benefit of the helpful items, services, and great distractions provided by the family support program.

The name Michael Patrick chose is REMISSION COMMISSION.

Thank you for visiting our Caringbridge site, and for praying for the families who make this journey.

Tuesday, March 14, 2006 8:59 AM EST

Day Plus 243


Michael Patrick weighs 16.0 kgs. That is 35.2 pounds, and it seems about right.
He went from a height of 99.7cm on Feb. 23rd to 100.2 cm yesterday. I’m not sure how that compares to normal growth for kids his age, but to me the fact that he is growing at all after chemotherapy and transplant is good news.

We have numbers to share! I know, I know, we have weaned ourselves from the constant knowledge of numbers. We’ve really been doing well with it. Still somehow it is great to have labs done so we have a clue. I call to mind a statement made on Nicholas B’s site. Something to the effect of wishing for a scanner in the doorway of his room so every time he passed through it, there would be a clean bill of health. Remission is a beautiful thing and we long to keep it! I’ll probably ramble on about this soon, but for now, just the facts.
Labs done Monday, March 13th:
White Blood Cell Count: 5.7
ANC: 2400
Red Blood Cell Count: 3.45 (Hgb: 11.8 & Hct: 32.7)
Platelet Count: 352.

February numbers were not shared (remember, I was determined that hearing they were each good was enough).
Information from Tuesday, January 17th:
weight: 15.8 kg (that's up from 15.7 kg on the 9th, and is between 34 & 35 pounds)
White Blood Cell Count: 4.8
ANC: 2600
Red Blood Cell Count: 3.40 (Hgb: 10.8 & Hct: 32.8)
Platelet Count: 387

Thanks to those of you who continue to pray for Michael Patrick!

Thursday, March 9, 2006

Michael Patrick is GREAT!

He has come to the conclusion that our team name for the 6th Annual Rainbow of Heroes Walk wil be:

Remission Commission

Wednesday, March 8, 2006 9:38 AM CST

Michael Patrick is doing well!

His nose is still a little stuffy, though he says, “Gwreat” when asked about it.
He is complaining about his back hurting. We think it might be from wrestling with brothers yesterday.
They had a lot of loud fun before I could stand it no more and called an end to it.

Michael really wants to change the background of his site.
So off we go to view selections.
First, he slid off of my lap saying “I need a back nap”,
And when he reached the floor – almost as quick as spaghetti- he said, “I’m giving my back a rest.”

Enjoy the new look.

***
When Michael was having trouble deciding on a background, he asked what AJ's page looks like. We looked at it together and he is certain he wants these angels for his page too.

Monday, March 6, 2006 8:17 PM CST

Michael Patrick is doing well!
His nose is a little bit stuffy and it makes him sound funny. It isn't extremely obvious, but after several sentences, it gets comical. It is almost as if he is faking an accent or something. He seems to be feeling okay otherwise. He had a nice nap this afternoon, which is a bit unusual, but throughout the day, his activity level shows he is doing very well.

Our latest sterile gloves are teal. This cracks Michael Patrick up because until now, only the purple ones are not ugly. Tonight, he asked me to make a glove balloon, and he is enjoying it more than one would think. I think he's just thrilled that I have allowed him to have it. Oops, I spoke too soon and now he needs me to play volleyball with him.
Take care!

Saturday, March 4, 2006 {Holding super sisters Jenna and Tara in prayer!}

Day Plus 233

Michael Patrick and his family are doing well.

It has been just over a week since we stopped using the adhesive dressings, and his skin has cleared all but completely. While the skin healed, his itching was relieved by the cortisone cream, and now the itching is pretty rare. I cannot say that he has had fewer dressing changes this past week because they have remained daily, at minimum (to apply the cream). What I can say is that he handles the changes FAR BETTER than he ever has before. Funny how, if there is nothing to pull off of him, there is no painful pulling sensation. Go figure. We’ve even managed some changes with just the two of us, which means he didn’t have a hand to squeeze. THAT is progress! All in all, it has been a really good move for us to change to the gauze and ace. As a bonus, when I wrap his chest, I tuck the lumens up and underneath so nothing hangs loose or needs to be taped and pinned to his shirt. It hasn’t really freed him up any more than when they dangled, but it has made me a little less tense. It is far easier for me to allow him to be a four year old boy. With the central line, many of his active moments caused in me a dread I cannot explain. Since his risk of “minor injuries becoming matters of life and death” has decreased, I am trying to lighten up in many ways. This too, is a process that cannot be hurried, but tucking the lumens securely under the ace has helped a lot.
Another great thing about it is that yesterday he had the most normal bath ever (since March 24, 2005). The whole line was under the ace, so although we still had to keep his chest dry, I didn’t have to hold the lumens out of the water through the entire bath. For long baths, it can get quite uncomfortable to keep at least one hand on his chest the whole time! He says he will be glad to have the chance to bathe without the line! He and Thomas sometimes speak of swimming this summer. I think Thomas thinks it will be at The Millennium Hotel or The Forest. That is kind of funny since each is in Durham.


Mike and I are very proud of our teenagers!

Joey has completed the NC Driver’s Education program. He took the classes during his Christmas break so he wouldn’t miss his after school commitments. He has spent evenings this week, plus this morning getting in the required hours of driving with an instructor.
He is also one of ten students from his school who have been selected to take the National Junior ROTC academic test.

Jewel has had her artwork placed on display at the new ImaginOn building in uptown Charlotte. It was selected from among all of the artwork done this year by students from her school, and will hang until March 15th. If you see Mary Margaret, please let her know.


As for our fundraising team, Michael seems to think the name should be “spin” or “soda”. I’m not sure if it is him that does not quite “get it”, or us. We’ll be making a name official soon.
Special THANKS to the Tae Kwon Do teachers and students filling the collection jar at Jen’s! Welcome to the Team! I think maybe someone should break some bricks, don’t you? Ha ha

Blessings!

Sunday, February 26, 2006

Hi all,
Michael is doing very well and so is the rest of the family. Jewel turned fourteen yesterday,she had some of her friends stay over and we went bowling. Joey is doing
his JORTC events and doing well. Thomas is doing great at Park Road Montessori. Michael's dressing changes are going alittle better his central line site seems to be clearing
up, it was real bad for a few weeks. Michael will be seen at Duke in April and his lines will be removed, that will
be a good day for us.
Please continue to pray for Bryce Anderson.
Thanks,
Mike & Jean

Saturday, February 25, 2006 0:46 AM CST

Michael Patrick is doing well! You may want to check journal history if you didn’t read that he weighs 16.3 kgs.


While on the PBMT unit, I saw overwhelming evidence of my opinion that:

God did a great job making human beings! Each of our body parts is integral, including parts I didn’t know we had! It takes every intricate detail of our bodies to make our bodies function in a healthy manner, and if even the smallest of elements is either missing, or broken, or under active or overactive, or in any way not ideal, then the health of the entire body is affected. In our humanness, we may think this is bad, for we do not know His plan, but He knows, and if He made it, it is good. For reasons I will never fathom, these flaws are part of perfection in some of His children, and are required for His plan.

With this thought in mind, we would like to wish each of you

Happy National MPS Day!

Increase awareness!
MPS stands for Mucopolysaccharidoses.
It sounds like: myook oh pah lee sack a ride oh sis!
Here is my very oversimplified understanding of this group of diseases. The body doesn’t produce the specific enzymes needed to break down materials in cells, & the material remains stored in the cells. Each and every cell in the body becomes burdened by extra material, and this causes increasing damage throughout the body.
For more information, log on to http://www.mpssociety.org.
I am guessing that those of you who want to meet the children & families have already clicked the Frankiepants.com link below.

Today Mike and Jean will be wearing PURPLE as a small way to honor the heroes who are fighting now, and in memory of the courageous angels who have forever touched so many hearts, including:

Frankie, Jessie, ^^Asher^^, ^^Tyler Boo^^, Cooper, Ciara, Lauren, Annabelle, Izzy, Graciella, Hunter, and ^^Tommy^^.

The MPS Society was scheduled to ring the NASDAQ stock market closing bell in honor of today.

Friday, February 24, 2006 3:06 PM CST

Happy Birthday, Uncle Kevin.

Michael had a trip to Blume yesterday. He weighed 16.3 kg! Must be the jelly beans ;)
They did labs, and the numbers looked great. I don't even know what they are! I just know they are good and I'm okay with that. See, Ms. Debbie, there's hope for me yet! ;)

As you know, he had a dressing change everyday for seven days, and finished his ten days of antibiotic, showing great improvement from Feb.11th. Still he was red and irritated under the dressing, and though it seemed to be less serious, it covered more skin. He was very bothered by itching. Mike and I wanted Dr. Mark to check it out so we could comfortably enter the week-end.
Dr. Mark ruled out viral, bacterial, and fungal causes, stating instead that it is an allergic reaction to the dressings themselves. He said to apply cortaid cream a few times a day. (Here's the part where PBMT parents may see the limitations -not impossibilities; we don't believe in those anymore, only challenges- and drawbacks, while others think this is an easy solution. Both are correct.) After some phone conversations (and e-mails!) we decided to make a change in the way we dress this IV catheter site. No more adhesive! Site still occluded! (Details available upon request. Hint: it is Miss Moo style! Thanks, RB!) It is proving to be far less irritating to Michael and the skin looks improved already. Plus, because of the cream, he is not in torment with the itching.

Michael's classmates have been so very kind! They have made him a part of their class and we are appreciative. ("HELLO CLASS!") He is looking forward to getting the Okay to attend school this Spring. First things first. One day at a time. Today he is "Gwate", um, I mean Great!

DID YOU KNOW???
Saturday (tomorrow) is not just Jewel, Amanda, and Ms. Kelly's birthday, it is also NATIONAL MPS DAY! Learn about MPS at http://www.mppssociety.org, or like I did, at Frankiepants.com. Mike and I will be wearing purple as a tribute to the Heroes of MPS.

Wednesday, February 22, 2006 Noonish

Michael Patrick is doing well. Thank you for checking in on him, and continuing to pray.

Special thanks to Nina for signing in, and for asking such a cool question. :0) Am I allowed to say in reply, “Well, only if you like it!”? It was my hope that you would see it and like it. I was looking for a way to honor the lives of two great kids who will forever be a part of so many people’s hearts.
This page was created to keep our extended family in touch with what was going on with Michael Patrick’s treatments. (What a blessing Caringbridge is!) Once I knew our unit neighbors were reading our site, it became increasingly difficult for me to keep my emotions out of updates. Those who do not know me well would never guess that was my mission, or they might think I have failed miserably, as it might seem overflowing with emotion. Our 52family probably knows that it isn’t. I simply let other people’s updates reflect the feelings I shared with them. There were many events that have shaken us and shaped us in ways only PBMT folks understand. I have left them out of this journal. Many of the people in our support network have been keeping in touch with other sites through links on links, etc. Many more have wanted only news of Michael Patrick and his journey. Michael Patrick’s journey has ALWAYS gotten the positive spin!

What you noticed on November 18th is that I could no longer say nothing! I had to find a way! I had trouble finding a positive spin for “We are devastated with you!” Though we still haven’t shared all of our emotions, including shock and heartbreak, empathy and love, the positive spin is in that of Eternal Life! How can we go on if not for the knowledge that Our Lord and Maker has healed them and allowed them onto the playground of Oneness with Him? It is such a Glorious vision that I am blinded by it.
(Well, that, and the tears I don’t mention directly. I know you get it.)
It doesn’t get more positive than oneness with God. So here it is. Thank you for pointing it out, for perhaps it is time everyone knew. We grieve many losses on a parent to parent (and sibling to sibling) level, and pray for the families to endure and be comforted.
We miss the sweet friendships extended to us by these remarkable boys.
Joseph and AJ;
AJ and Joseph,
forever friends,
forever honored
and remembered,
a part of our hearts forever;
never to be forgotten,
but honored each day
as we try to get along
and look out for one another.

Monday, February 20, 2006 7:13 PM CST

Michael Patrick is two hundred, twenty one days post transplant. Oh, how fortunate we are!

Well, we did NOT change the dressing today, and he and Thomas have been inseperable. That has been mostly good.

The new front page photo (above) was taken when Little Spiderman resided in room 5109. I guess that was June.
As for those in the photo section:
FIRST
"Thomas, and me, and Toucan Sam" at the hotel in early January.
MIDDLE
"Oh, that's me doing my astronaut breathing", which means he was inhaling pentamidine. I have been making the most of every situation he has encountered since Saint Patrick's Day, and breathing in this smelly stuff is no exception. I told him since he wants to be an astronaut when he grows up, that he could do some special astronaut training. He actually had to do two breathing treatments, but he didn't need a tent for the albuterol. It was practice for the real space training! Hey, nobody said it was easy to make things fun, just helpful! Anyway, this monthly treatment to prevent a certain pneumonia was given IV while inpatient, and has changed to an oral liquid since coming home, so we know this picture was at the clinic. Remember how purple his cheek was. Now it is hard to tell where it was.
THIRD
The top two were when we ran into Jenna at clinic. Once the kids were each "outpatient", living at different apartment complexes, it was a real treat to see her and her mom!
The bottom ones were taken from KelseyandTyler.com. These singing kids really brought cheer to Duke kids. I bet they don't even know what a big difference they made. We hope to hear from them again, and not just on their CD!

Saturday, February 18, 2006 8:53 PM CST

We've had some great company this week.
Thank you, wonderful ladies for sharing your time with us here in North Carolina!!
Michael Patrick has really enjoyed the extra attention. That goes for each of us.

Good to see you, Camille. We are praying for Father Tom too.

Friday, February 17, 2006 9:09 AM CST

Last night, Michael came downstairs and told Dad that he needed a dressing change. Sure enough, the dressing wasn't covering the site at all. We aren't sure why the dressing had come off, but the little guy was right in making us aware of it. We're all pretty proud of the fact that he told us he needed a change even though he hates having them.
The old dressing was nothing to get completely off (usually it hurts because it has to be pulled), and Michael handled the Chloraprep well, holding (and SquEEzing) Dad's hand. Chloraprep is sort of like an alcohol soaked sponge with a handle & is used to clean the entire area with each change, and yes, it stings. We had to use a larger dressing (we're out of the tiny ones), so I was able to loop the line.

Today is off to a good start.
Happy Transplant Day to Cooper!

There is a bone marrow drive in Charlotte tomorrow. See link below.

Thursday, February 16, 2006 12:59 AM CST

Michael Patrick is doing well. His chest is improving though it still looks bad. The last two dressings I put on were the pediatric IV3000. They are very small. I want to air out as much of the skin as we can because even though the infection is clearing, the irritation is obviously aggrivated by the dressings.
The tiny dressing has no room for a loop, so Michael Patrick has to be watched more carefully. He is a very active little guy, and he's so used to the line being secured - including a loop- that he doesn't think much about it anymore. The loop was so that IF the line got tugged hard, the loop would release (or pull out from under the dressing, giving that tape removal pain that would alert MP to take notice) and allow slack so that it didn't actually tug at the exit site.
So, we are back to using the tape and safety pin. That's sort of like looping it out of the dressing but under the shirt. The tape just serves as a tab for pinning the line to the shirt. We haven't done much of that since he stopped getting infusions, because without a line and pole, the loop provided plenty of safety.
I hope this makes sense. The smaller dressing leaves more skin exposed to air, allowing healing, but it also leaves more line hanging down not taped to his chest, requiring caution. That's all.

There is a bone marrow drive at Vance High School Saturday! Check out the link below.

Tuesday, February 14, 2006 9:55 AM CST

Dr. Mark says the medicine is doing a good job. Michael's site looks far better than Carrie had described to him. Michael will continue the antibiotic he started Saturday, taking 5 mls. four times a day - for ten days total.
While at Dr. Mark's office (Blume), nurses drew blood for the monthly labs, so we aren't planning to go back in next week. We'll just schedule a March visit.

The amazing Michael Patrick weighed in at 16.0 kgs!!
He has gotten a little taller too, but we could tell that from the fit of the SpiderMan suit he wore this week-end.
Michael's counts are all good. He looks great, with the exception, of course, of the irritated skin under his dressing.
We are not enjoying the daily dressing changes at all. Since December I've wondered, a little more with each change, how many more I can stand to do. They were weekly then, and now I am just counting down to line removal. I am afraid it will still be about fifty days or so. The dressing changes should go from daily back to weekly after Saturday.

Thank you for your prayers.

Sunday, February 12, 2006 part two

We had a plan. We would zip up to Raleigh and see the game, spend the night close to RBC Center, go visit Duke socially for a short while Saturday morning, and zoom back home in time for Joey to attend the Junior ROTC Miltary Ball. He had made a commitment to be part of Arch (you know, holding a sabre up in the air as people walk under it during The Grand March), so we had planned the whole trip around assuring he would honor that commitment. We'd be leaving Durham County by Noon or 12:30 PM at the latest. Did I mention this was a human plan?

The game was great, the hotel was good, breakfast and the short trip to Durham were fine. We visited 5100, and made the "spin through the halls", as Dad chatted longer with the staff. As we walked the unit--without an IV pole, I noticed for the first time, more staff were strangers than were our beloved friends.
Then Michael J. and Michael P. went into 5200 to say hello, while the rest of us waited -being goofy and glad to be home.
...
THEN we went to the CHC (all set up for the upcoming Radiothon) to say hello in the clinic.
Well, many PBMT folks know that stepping into the clinic can make for some unpredicatable moments! Clinic days move to their own beat. Saturday was No exception. The Michaels went in to say hello to staff. (Better two go in than six, as we didn't know how many folks were back there or how much was going on.)The 3 other kids went right to Nintendo!

Remember that itching under the dressing I mentioned? Mike asked Wendy to look at it - just to ease our paranoid minds, right? Well, Mike came out and said that Michael Patrick was in the Day Hospital watching a video, and he made the "visit" an official Visit, with paperwork and all.
Carrie, our week-end Nurse Practitioner, agreed that it looked bad, (infected)and furthermore needed to be cultured! It was obvious that there had been some weeping going on in there. Here's what would happen: They'd take off the dressing, milk the site to see if it oozed, swab it to do cultures, use Bactroban or similar ointment before redressing it, and then start an antibiotic, probably Vancomycin.
Okay, good thing we asked, right?!
Wheels spin in our heads as we do the math...Michael's only known reaction to medicine is Red Man's Syndrome with Vancomycin. Due to that, he gets pretreated with Benadryl and then the IV drug runs over two hours instead of one. We don't have time to wait for that to happen, AND then get Joey to the Ball on time. Carrie says they would want to see Michael tomorrow to check his response. We figure one adult would drive to Charlotte with Joey, Thomas, and maybe Jewel, and one would stay in Durham with Michael, and Jewel maybe. Our minds race, and the plan changes many times over the next hour.
...
Carrie is pretty certain that the infection is only on the skin and not in the line itself (cultures take days to confirm this).
No Vancomycin. No infusion at all. A different antibiotic can be given in oral liquid form, for ten days.
The dressing will be changed DAILY for seven days, using Bactoban ointment.
Doctor Mark will see him in Charlotte on Monday.

We left Duke just before 2:00 PM.
We made it home safely. Joey looked dapper in uniform, complete with black bow tie, and had a great time at the ball.

We are watching that Michael remains fever free, or to the ER he will go. Right now, he is having a benadryl induced nap, because after today's dressing change, the itch was unbearable. The medication should kick in soon and as the infection clears, the itch will go away.
We'll see what Dr. Mark thinks tomorrow.

Sunday, February 12, 2006 part one

If you didn't get the last update, it simply means you are not a Carolina Hurricanes fan.
When number 12, Eric Staal scores a goal, the screens flash "ITS STAAL GOOD!!!!!". (2 of the 3 goals for the Canes were Staal good) It was a great game Friday night, even though the Pittsburgh Penguins won, 3 to 4.
We were blessed with a surprise trip to the game, where Michael Patrick was able to see a sporting event in person, like he has been wanting to do so much since he met some Bobcats.
We arrived early enough that it wasn't too crowded to have him cross the parking lot and walk through the entrance to the private suite. Of course we kind of made a circle around him so even the small crowd couldn't get close. Since there are six of us, it sort of just happened naturally. Not quite like his own secret service team, but not too far off either. Far less organized, way more casual, yet as effective.
We had a great time. It was rather bizzare to be out in such a large, crowded place without being in a crowd. We could SEE the crowd and be a part of it, but safely. It was very cool (literally too), and we are thankful to the donating party, and Duke team who suggested us.
Seeing our PBMT family was as good as seeing the game. We even met some new members, after just reading about them Thursday. I'm looking forward to tracking progress on Cooper's web site (via Frankiepants.com - linked below).

The Carolina Hurricanes support Duke Children's Hospital and Health Center, UNC Children's Hospital (I learned that from Amanda's site), and CURESEARCH. Those I know for sure and bet there are more. Thanks Hurricanes! Thanks Siemens! (their suite) Thanks Duke!

Saturday, February 10, 2006 7:50 PM CST

IT
STAAL
GOOD!!
!!!!!!!

Friday, February 10, 2006 8:46 AM CST

Day Plus 211

It is hard to comprehend that we have been home home for four months. It feels (to me) like eight years - in a time warp!

Michael Patrick is such a cheerful kid. We have no counts to share, but he looks good, and says he's great. Maybe Thomas taught him that. I'm glad.
He has been a little itchy - which scares a PBMT parent a bit- and has some irritation under his dressing. He has also been rubbing his eyes some lately. They don't look dry though. He usually has an eyebrow or lash in there. Who thought that would be a good thing? whew!

"Coconut morphing" got me to notice the eyebrows thinning a bit here in Charlotte too. Sort of having more shape again.
He had a haircut!! Again, the shape is the difference, as it has an edge now, and looks "regular". Joey says it looks like Andrew's did as a kid, since it was combed over when he got home, the way Drew's always was.

All in all, we just try to remember
IT'S ALL GOOD!

Monday, February 6, 2006 entry#2 10:20a.m.

When I saw Michael Patrick for the first time this morning, he was sitting in the den watching Playhouse Disney on TV. He was FULLY DRESSED! I guess if you're going to go for a jog in the early morning, day clothes are required. (He and I call PJs "Night clothes", and everything else is grouped into "Day clothes".)
That was quite impressive, I must say.
Then there is Thomas, under his blanket! He didn't look ready for Feb. 6th at all! Just the same, he was the one who had to get into the tub, and into day clothes in time to catch his school bus.

Between then and now, Michael HAS HAD A NAP! Okay, it was pretty short, but it seemed like deep sleep. His endurance doesn't seem to last as long as pre-diagnosis, but has improved since then. Meaning he gets tired very quickly, but bounces back well too.
Speaking of bouncing, he needs me to help him find his Doctor Tommy Oliver. (That's an action figure you know)

God Bless you!

Monday, February 6, 2006 5:25 AM CST

Good morning!

I think it is far too early for me to update, as I am haven't shaken the sand out of my head. You know, I'm pre-coffee. Times like this I really miss Isaiah's brew from Oasis. (That's the good coffee shop in Duke U. Med Hosp.).


I woke to Michael Patrick's WIDE AWAKE voice! No clue what he was saying, but it was jolly and he meant it. So as I'm dragging myself down the stairs, I stop, caught by the (at this point only audible) scene. I don't want them to see me. I sit on the step and LISTEN.
The conversation is too hard for me to follow fully. It's kind of like a Runnaway Bunny banter. Instead of "Then I'd turn into...", they were saying, "Then I'd get my...". I'm pretty sure they were saying tools or gadgets of Rescue Hero guys or Power Rangers or something. They certainly knew what they meant. Alas, I am not familiar enough with the handy-dandy-go-go grappling whosamathingies, um, I mean Terminology.
BUT
While this quick and serious (and secretly hysterical, to me) conversation is going on,

Michael Patrick is RUNNING from room to room, in circle after circle. Thomas sounds pretty stationary, and the timing of Michael's path allows the exchange of words to flow very nicely.

Thomas turns on the TV, and Michael joins him for a show.


Have a great day!

Saturday, February 4, 2006 8:57 AM CST

Michael Patrick is far too busy playing to tell me how to update today. "Just make it be something good", he says.
"It's all good", I think, blowing off the tremedous pressure he's just placed on me.
Then, Thomas comes to the rescue and whispers in his little brother's ear.
Michael tells me to say:
"Michael is starting four car collections. What exciting news!!"
Then, off he zips with his little Hot Wheels cars clanking around in the plastic pumpkin he's carrying proudly.

Grinning Southern Greetings to our COUSINS today!

I think it is going to be a good day.
Enjoy!

Friday, February 3, 2006 6:29 AM CST

It's all good!

Did you know that last month Michael Patrick met his teacher? He's enrolled at the public Montessori, and has delayed his start, so they hadn't met. It was a workday - no students - and we got his doctor's approval. Jewel and I took him to the school. He and Ms. Angie enjoyed several lessons. It was wonderful!

When I asked him what he thought about his classroom, he said, "I think it's great!" (Pronounced with two syllables). Then I asked about his teacher. "Well I think SHE's great too!" "She's Beautiful."

He is looking forward to having more lessons. I know this because of the way he started a sentence with the phrase, "Next time I have some lessons, which will be soon, ...". The way he was so matter of fact was so cute.

So today we send great big grins and greetings to everyone in Ms. Angie's class, and to those at the school who still check in.

Have a fabulous day!

Thursday, February 2, 2006 9:20 AM CST

Michael is sleeping in very late this morning.
He won't see his shadow that way! ha ha
Happy Groundhog Day!
and
Happy Birthday to Uncle Ross!

Wednesday, February 1, 2006 2:05 PM CST

Happy February!

Michael Patrick is doing well.

He hasn't created any new sandwiches lately, but he is consuming some calories.

The flashback is from when we were in room 5124. I remember Paul's visit made Michael so happy! I think it was MP's first experience with Chutes and Ladders. What fun! Don't ask me details though because I got to get out of the hospital. ha ha
What I remember about Michael playing the game over the next few days is that he was the one allowed to move in any direction he wanted and the numbers didn't mean he couldn't. Okay he found a way to remind us all that he was only three years old. He handled everything else in such a mature manner that it was easy to forget.

Monday, Jan. 30, 2006

Michael kept us on our toes a bit today. He got up early and went with Thomas and me to the bus stop. We didn't have to wait long for the bus. Michael walked all the way back home and then he was so tired that he didn't eat the mini wheats he requested. Instead he asked to go have a rest in his bed. That didn't last long, but he did flop down on the couch and, after asking me to leave the room, slept for a few hours.
He seemed happy and said he was ready to have the mini wheats for lunch. He watched TV and ate and then he felt nausious. Hmm. He knows that feeling when he gets it. He wasn't wrong. We called the medical team with a complete list of symptoms. Not to worry... Clarity on what to call back about...
He stayed fever free. He rested a bit more than usual (which means some rest, rather than none), and ate very little the rest of the day.

We've no cause for alarm.

Friday, January 27, 2006 7:05 PM Eastern

Some of you may be wondering if things are okay. I assure you Michael Patrick is doing very well. He has not seen any doctors in a while. This is the way it has been planned, and of course, this is good news.
It's all good.
I am not exactly certain as to how I can update you without any numbers. We've grown so accustomed to taking comfort - or concern - from the numbers, you know. His weight, his white blood cells, his red blood cells, platelettes, bili, bun, blood pressure, and on and on. I cannot measure any of that at home, and I'm learning to be okay not knowing. After all, he looks great, and is very active. Besides, we jump on the phone about each little tiny change or concern. Really it is like being new parents all over again with the "just checking" things we come up with. Fortunately our extended team puts up with us very well.
We should have some numbers again in late February.
Just for fun, I have one number for you.
Michael's temperature is 98.4 degrees. Tadah!

Hug your loved ones and have a wONdErful week-end!
God bless you!

Thursday, January 19, 2006 9:43 AM CST

Day Plus 190


Michael went to Blume Clinic on Tuesday. He asked yesterday if we could go again. He knows we are not scheduled to go back for a whole month! We will miss seeing the Blume staff, and spoke (Tuesday) of a social "appointment" in the mean time. Little did we know it would be requested so soon.

Information from Tuesday, the 17th:

weight: 15.8 kg (that's up from 15.7 kg on the 9th, and is between 34 & 35 pounds)
White Blood Cell Count: 4.8
ANC: 2600
Red Blood Cell Count: 3.40 (Hgb: 10.8 & Hct: 32.8)
Platelette Count: 387
Magnesium level: 2.1 (very nice that it is between 1.6 - 2.4 since this supplement was discontinued on the 9th)

Short summary: "It's All Good!"

Monday, January 16, 2006 11:20 AM CST

We are pretty happy that the Panthers won! We read in our local paper that a teen named Eric (Duke patient) is going to the SuperBowl. Like him, we are hoping our Carolina team will be there to make his granted Wish even more thrilling.

Michael had an unexpected dressing change last night that wasn't too bad. He has learned to handle the trauma a lot better. Though he still wants me to just add more tape instead of pulling off the whole thing and cleaning the area under it.

I haven't talked much about food lately. He is eating well for the most part, though he'd rather have candy than anything. This week we created the most special sandwich. He called it "specialest", and told me what to include. "Peanut butter, marshmallow fluff, and both strawberry AND blueberry jellies". I wasn't sure he'd eat it, but he's sticking to his story that it IS "the specialest sandwich ever". The best sandwiches come "with free green olives and barbecue chips"!

Tuesday, January 10, 2006 6:46 PM CST

Six Months Post Transplant today! According to Dr. Martin anyway, because it is day plus 180! (It's okay if you want to celebrate six months again on the 14th!)

Yesterday, Michael Patrick's labs revealed:

Hmm
Can you say "Normal"?

White Blood Count: 5.8
Hemoglobin: 10.8
Red Blood Cell Count: 3.18
Platelette Count: 289
Glucose nonfasting (included for Tracy):109
Bilirubin, total: >0.1 shout "Hooray" here! This was one of his issues, and the medicine for it has now been "DC"ed - Discontinued!
Magnesium: 2.1 "Hooray" again! This supplement also D.C.ed!

Lots of blood was drawn for other labs to be done that will take quite some time. Chances are you will only read about results if there is something that concerns us.

Other test results:
Cardiac Diagnosis (ECHO): "Normal heart"
Pulminary Function Test: 117f predicted (I'm not sure of the exact words to use, but this is a great result for the lung test)
A pleasing chest X-ray was also taken.
Michael slept through part of his physical exam, though he was faking at first. chuckle chuckle grin.
As I've said, "It's All Good!"!

Special prayers for my friend "e", planning to deliver a daughter Wednesday.

Monday, January 9, 2006 8:17 PM CST

Oh! There is just so much to say that we cannot get it all in this entry. It would be far too confusing even for those that follow the twists and turns in my train of thought. (You know who you are! ha ha and aren't ha ha)

Michael is doing well! He is great! He didn't play "shy guy" for our many little visits throughout the hospital/CHC, and some of his greetings were "just way fun!" to watch! I got a kick out of seeing people notice him approaching -obviously a kid who likes them a lot- and not really knowing quite for certain WHO he was. They were not obvious about it, but they'd scan the area until they saw Mom or Dad or Joey, or Jewel, along with Thomas. Then, they'd lOOk back at Michael Patrick, sort of amazed as much as delighted. I'm telling you, it was great fun!

Okay, reeling in my thoughts- assuring myself I'll reflect more later & wondering how true it is.

I had mentioned that last week Michael didn't get weighed. I wasn't clear, but he did not see any doctor's last week at all! Dr. Mark knew he'd be seeing Dr. Martin, so he said he'd see us after that. Probably next Tuesday for those keeping track, but don't hold me to it! Dr. Mark doesn't know yet, so I'll call Angie.

So Today, Michael Patrick "Spiderman" Wren weighed in at a whopping 15.7kg!! okay, that's about 35 pounds and, although he is not the biggest four year old kid you'll see, he is GroWinG! This is good news! He's taller too.
And the best part is that he is feeling Great!

It's all good!

Thursday, January 5, 2006 7:46 PM CST

Michael "says":

mnvcxzkjhfdsa69-=87345210wqtyy]=997$#
plzxcvzx
uytrtt

Translation: From Michael: Hi! I love you and
I like typing. Thanks, Mr. Dave for the cool pictures.
Go Panthers! Beat the Giants!
My favorite color is ReD!
Thanks

Michael Patrick picked the background today that is the "most handsomest!". He didn't get weighed this week, but he seems to be holding his weight well.

All is well here at home home. We are getting ready to head to Durham in a couple of days. Somehow, we just can't wait. I wonder what is blooming in the Garden, and who's working the week-end shifts. DUMC staff is extended family.
I know it will be quite strange not to see the families we miss so much, but seeing people who know them will be good too. You are still in our prayers!

Tuesday, December 27, 2005 8:36 PM CST

Today has been good.
Michael Patrick weighed in at 15.5 kgs. That is because he's been a real Chow Hound!
Jewel went with us to Blume Clinic for the first time(inside). She didn't get to meet everyone we usually see, but she and I both met Nurse Chris. Michael already knew her, and she said he needs to drink more fluids.
Doctor Mark said all of Michael's counts are great and, though he has sniffled and coughed a few times this week, his lungs sound crystal clear. He said our next check-up will be at Duke, and we should call and let him know what schedule Dr. Martin wants Michael to follow after that.
The check-up at Duke should only be a day in clinic.

Jewel has commented often about the contrast in size of our two clinics. Duke is huge and Blume is tiny. We find it humorous. I'm so glad we didn't get used to a tiny place only to be forced to transfer to a huge place. Well, we DID transfer from Presbyterian to Duke, but only after six days - back in the diagnostic phase of our journey - and we weren't used to any part of it at all. Though it was like landing on a Space Station, we got used to Duke as we got used to the diagnosis, life changes, Chemo and so forth.
Now, we are looking forward to going back! But just to visit!!

Everyone is doing well.
Aunt Paula is heading back home to Charleston too quickly. Seems like she just got here.
Thomas wants me to say "HI" from him.
Today has been good.

Sunday, December 25, 2005 Merry Christmas!

May your Christmas be a time to reflect
on the simplicity of His birth
and the magnitude of His purpose.

Blessings to each of you!

Michael's having a wonderful day, as are the rest of us.

(He is sniffling a bit...and is scheduled for his weekly check-up on Tuesday.)

Tuesday, December 20, 2005 9:44 PM CST

"Fine"
WBC = 4.1
weight = 15.3 kgs


I brought Michael to the computer because he hadn't seen his Squishy online. He liked the photo. We looked at the others too, and he said he could read the ones with the blue football to me. Sure enough, he read "...masked man..."(almost) exactly as written, with the "...me, Michael!" part sounding just like it did that day. So sweet.
Then he wanted to see the rest of his site. He likes the snowmen, but he wanted a change. We were well into the background browsing (previewing many) when I realized that he wanted the front photo changed too. I personally like the current one. Besides, he will have to take that up with Mr. Dave an other day. For now, we are changing the background to the one Michael likes best tonight. He calls it "my wibbins".

So, we went to Blume Clinic today. Funny; the scale read 33 point something pounds at first, and although "lbs" makes more sense to me in general, I am so used to the fluctuations registered in "kgs" that I had no clue if he had lost or gained weight. After translation, he is up from 15.1 kgs last week to 15.3 kgs today.

His White blood cell count is 4.1, and platelettes are 337.

Thomas came home with the sniffles and so he and Michael were both wearing masks even though they were inside all evening. Michael is camping out with Joey, rather than sharing Thomas' room. Michael wanted Joey to fix his bed just right. Joey thought I was kidding as I explained that Star goes at Michael's head, and Chemo Duck goes at his feet, near Nice. The Carebears go at the edge of the bed near his shoulder and elbow with Lighthouse Bear, and Rat goes on his neck. Joey laughed, still thinking I made it all up, but I knew Michael wouldn't rest until all of the stuffed critters were right and he had Squishy.

Now they are all tucked in, and SCHOOL'S OUT, so we might sleep in. Goodnight. God Bless You!

Tuesday, December 13, 2005 10:16 PM

Hi everyone,
Michael is doing very well,he was checked by Dr Mark today
and all his blood work came back where we need it to be, at this point in his recovery. Thomas is in his words is doing great. Joey and Jewel are getting along and waiting for school to end.(Ha,Ha)
Jean and I are very happy to be where we are right now with Michael's progress. We have heard from Michael's teacher at Park road and we think she may come to visit him
sometime soon. Michael's classmates have left some nice messages.(Thanks)
Just as it has been from the get go their are other children that we care about very much and we hope that you
will say a prayer for right now please pray for Bryce Anderson.
Thanks,
Mike & Jean

Tuesday, December 13, 2005 10:16 PM

Hi everyone,
Michael is doing very well,he was checked by Dr Mark today
and all his blood work came back where we need it to be, at this point in his recovery. Thomas is in his words is doing great. Joey and Jewel are getting along and waiting for school to end.(Ha,Ha)
Jean and I are very happy to be where we are right now with Michael's progress. We have heard from Michael's teacher at Park road and we think she may come to visit him
sometime soon. Michael's classmates have left some nice messages.(Thanks)
Just as it has been from the get go their are other children that we care about very much and we hope that you
will say a prayer for right now please pray for Bryce Anderson.
Thanks,
Mike & Jean

Monday, December 5, 2005 5:48 AM CST

Baby Bryce continues to fight the after effects of AML treatments. Your prayers for him and his family are very much appreciated.

As for us:

No news is good news. We know many of you check in on Mondays, so here's a new update.
Fortunately, we've had no changes in Michael to report.
We'll get to the clinic for labs and a good look at him later in the week, not today.

We are looking forward to a visit from his teacher sometime in the near future. Special thanks to classmates for the great guestbook entry.

Have a delightful week!

Friday, December 2, 2005 10:49 AM CST

NEWS FLASH: We've learned that little Bryce is in the Intensive Care Unit and on a ventilator. Please pray for him and his family as they tackle this latest challenge. His site is below in links.



H A P P Y
D E C E M B E R ! ! !

The joke this morning is that "Michael is having a bad hair day"! How cool is that?!! I couldn't resist saying it. He really isn't having a bad day at all! It is just that his hair is "long" enough to stick out ever so slightly from the way his head was on his pillow while he slept. (It still isn't long, but so much fuller than just a month ago.)
He is very happy that there are no signs of curls growing. He knows it makes some people sad that they may be gone, but he's okay with that. Even the dozen or so hairs that never fell out show no sign of curl left in them. It is easy to tell which ones are "original" because they are so much longer than the black fuzzy stuff.

It's all good!

There's really no news to report. He's FINE!

Mom and I didn't make it to St. Matthew together this morning, but SHE WALKED to and from 7:00 AM Mass! How's that for a heart patient?! She's doing really well and we are going to get out of the house this afternoon. Thanks go out to all of you who keep asking and/or praying for her.

Blessings!

Wednesday, November 30, 2005 8:01 AM CST

One Hundred Thirty Nine days post transplant!

Michael Patrick says to tell you "I am doing fine, and I am watching Caillou". Caillou is a PBS kids show I try not to overdo because the 4 year old kid, Caillou (pronounced kI' Yoo) tends to be a bit whiney.
Anyway, Michael Patrick is fine.

Dad took him to Blume yesterday & it went well. I heard Dr. Mogul was dancing to the song from Madegascar. I'm not surprised. We learned in March that "Dr. Mark", as his staff calls him more often than not, has a way with the children. Nothing wrong with some fun!

Labs look good. Each count within the normal range.
WBC = 3.5 (LY=38.8 MO=8.0 GR=53.2)

ANC = 1.9 or "1900"

RBC = 2.80 (Hgb=9.3 Hct27.9)

Platelettes = 324
I'm still not used to seeing such a high number for platelettes. It is great, but it cracks me up. You know? I'm never going to see someone bump into something without thinking of their platelette count-- myself includued. I am so happy to have read that Kate's count is up to 63!

Seems our little guy has grown some! He's two inches taller than he was in March, and almost as heavy again.
3'3"
14.9 kg.

Joey is practicing each afternoon this week, getting ready for the big Drill competition Saturday.
Jewel is very happy to have a brightly painted room, after five and a half years of white.
Thomas wants a "day off" from school, but that is because he just had Five of them! He's still saying "great" a good bit.
Grandma Jo is coming to visit soon. She'll attend the First Friday women's retreat and then Saturday's drill competition with me before she has to get back home.

Dave suggested I add an educational section to the site, maybe like a glossary or key. He said he could put it in place of one of the three photo sections. I plan to update our main page soon anyway, so I'm thinking of including it there. You can email you ideas to jadubilu@netscape.net and let me know your questions too.

Have a blessed day!

Friday, November 25, 2005 10:06 AM CST

DAY 134 POST TRANSPLANT!

Michael Patrick is off to a great start. He has already eaten some frosted mini wheats (dry), mini marshmallows (his real request for breakfast that I wouldn't allow alone), a few walnuts, an apple (washed well, peeled and cut), and now he is woking on a bowl of buttered grits. He loves grits, unlike more than a few Wrens, I think.

Yesterday went very well, in spite of missing some phone conversations.
As we expected, Michael P. would have nothing to do with turkey. I told him it was "chicken on a bone" that we had cut off of the bone, so he said he'd try some. "Chicken on the bone" is what he calls chicken legs, and he usually eats one or more. Turkey just isn't the same, so it just stayed on his plate. Then, he asked for the apple stuff. Well, it didn't surprise me that he ASKED, because apples are such a treat after being on the "no-no" list for so long. The shock was that he actually ATE the waldorf salad. It has mayonaise in it, so I thought he wouldn't even get it to his mouth. My Mom always made it and I think all six of her kids like it, but I understand it isn't for everyone. Especially Michael J., and Joey!
Michael likes cranberry sauce this year because it "tastes like cranberry juice!" - big grin- And yes, he did have a hot dog too.

So here it is Black Friday, as they call it in retail world, and we are avoiding the crowds! Hey, it's what we do these days anyway, so no big deal. Nothing we could want or need is important enough to expose any family members to viruses or other contageous things.

Have a great week-end!

Thursday, November 24, 2005 Thanksgiving Day

THANKS BE TO GOD!

The Wren family would like to wish each of you a very happy Thanksgiving Day! May your day be filled with joy and peace and a bounty of blessings!

We are so very thankful for those of you who have followed us on our journey with Michael Patrick. We appreciate your expressions of encouragement, guestbook entries, and continued prayers.

God Bless You!

Tuesday, November 22, 2005

Doctor Bryant agrees: Michael Patrick IS doing well! When she asked him, he said "Great", with a big smile. He got the word (and attitude, I guess) from Thomas. Lately, Thomas has said "Great!!" in response to inquiries about his school day, his food, his class sharing session, and how he feels. It is nice to hear, but when Michael said it this morning to Dr. Bryant, I had to chuckle a little. He stole that answer, and it caught me off guard. I just asked him how he's doing now, and he said, "fine". Just checking. ha ha
That's my boy!

At Presbyterian Blume Pediatric Hematology & Oncology Clinic, which is our clinic here in Charlotte, results of complete blood counts are almost immediate. I remembered to get a copy this time, so I can tell you specifics. If they don't mean anything to you, rest assured that it is all good. For those who do understand:

WBC = 3.9 (LY=45.8 MO=5.3 GR=48.9ANC = 1.9 or "1900"

RBC =2.96 (Hgb=9.9 Hct=29.6)

His current platelette count is 385.

His weight is up from 14.2kg on the 14th to 14.7kg this morning. That's up about a pound, I think!

We are really glad that it is finally eggnog season! He has continued to ask throughout the year if he could have some. Try explaining to a three year old (& later to a 4 yr old) that he can only get his "favoritest ever beverage" at a certain time of the year and this isn't it! Good thing he wasn't on 5200 during eggnog season. He wouldn't be allowed any, I bet. (Due to the non lactose neutropenic diet.) Now he can have as much as he wants. That ought to put some weight on him.

He informed our clinic staff that he is not eating turkey for Thanksgiving, but hot dogs instead. Hot dogs and eggnog. Yum yum!

He has decided he is going to watch Popeye now.

Blessings!

Friday, November 18, 2005 8:27 AM CST

MICHAEL PATRICK IS DOING WELL! Praise God! His ANC was 2400 at his Monday visit. THAT IS THE WHOLE UPDATE. Isn't it great?! Now I'm going to ramble.

I scheduled next week's appointment for Tuesday so we are sure to get to see Nurse Angela, no matter who checks Michael. Everyone at Blume is so nice!

Michael is eating oatmeal now, so he won't have an empty stomach for medications. He has taken to sleeping in late again these days, so the oral syringes have been sitting, measured, waiting for him to begin his Friday. He is feeding himself! I do so enjoy that! Many of you know that he has made me feed him for almost all of 2005, even though he was perfectly able to feed himself in 2004. Eating is good. He is calling his orange juice "gas" for some reason. Maybe that's the current way to say "gold juice", who knows.

Cyclosporine is the drug we give to suppress the immune system. It is the cause of the growth of black hair, pretty much everywhere. We give it to keep Thomas' cells from attacking Michael's cells. This attack would be called Graft Verses Host Disease, and is one of the big reasons he has been checked so often, to catch it early if it rears its ugly head. Thank God, we have seen no signs of it. We are weaning the Cyclosporine levels. I think I told you this, but we are now down to 0.15 mls.per dose; still "Q12", meaning two doses a day. That is a tiny dose, by the way. The weaning goes like this: we keep the dose for two weeks & reduce it again, by 0.05mls. This process is scarey and hopeful at the same time. We focus on the hopeful, for sure. That is letting the strong cells be strong again, thereby boosting his immature immune system. We watch for any signs of any illness in order to pounce on it immediately. This is not new, we just pray and avoid germs he isn't used to.

While you are humoring my ramble, I'd like to share a thought with you. A picture in my head of two boys playing basketball. It is a noisy game, but the noise bothers no one. The boys are nine and four and their laughter, and their smiles are SO contageous our cheeks feel the force of the joy. It is plastic basketballs on a tabletop court. They miss; they hit; they score! Look again. Are they ten and five? You'd hardly know the one is twice the age of the other, for they are best friends. They have spent their most hopeful moments in life together. They have seen each other through their own best times and their own worst times. Times too harsh for most people to even imagine. Times so hopeful the heart aches for the future.
The balls bounce everywhere, and as our eyes follow one, we don't notice it increase in size. It seems like suddenly the scene has expanded. The boys are upright and jumping high to rebound for each other. They are outside! The fresh air is unbelievably sweet! Remarkable! The crowd roars in applause. Then we notice it: There is a profound lack of fear! There is a large crowd, and no one is afraid! Everyone is joyous, and free to be. Just be! They are clearly happier than we ever saw them, so happy our vision starts to blur. We see no more, but their laughter remains with us. We will continue to hear the laughter of best friends... forever!
Thanks for reading. The story is fiction. Or is it?

Saying extra prayers for Robert and Olivia.

Tuesday, November 15, 2005 9:34 PM CST

Day Plus 124

Michael Patrick weighed in at 14.2 kg. on Monday morning.
Any little sign of growth is a nice sign for us to see.
He continues to do very well. Today, he may have eaten more waffles and grits than any other day ever. Eggo made these Limited Edition NEMO strawberry banana frozen waffles. They are a hit! Although, I must add that Thomas says he doesn't think he would eat them if they didn't have on them the characters (he got Bruce on each of his). The flavor is not his favorite!

It has been a challenge for me to update this page lately.
I check the sites of 52Family, and it creates a motley mix of emotions for me. The only one I feel I can present here is gratitude for Michael Patrick's health. There's plenty of that, for sure! It is just an incomplete picture of what we are going through.
This is Michael's page and he is WONDERFUL!!!

Check out the latest photo! Sign the guestbook! Continue to pray!

For those of you we met at Duke, please know you are still in our hearts, our thoughts, and our prayers. We miss you!

Monday, November 14, 2005

It has been four months since Michael's bone marrow transplant. 123 days
Thank God he is doing well!

Monday, November 7, 2005 9:01 PM CST

Michael Patrick weighs 14 kg. That is 30.9 pounds. :) He hasn't gained any weight overall compared to March, but he is creeping back up toward that 15 kg comfort zone.
All of his numbers look good. His pain/complaint level is "Zero".
He had a nice time in the Blume Clinic playroom while waiting for his appointment to begin. I am so glad he likes it there. I tried to picture Debbie assuring me that he could touch the toys.
He let Dr. Mark look at his chest and remove the bandaid to see that it is healing nicely where the line once was. Michael wasn't comfortable without a bandaid, so Daffy Duck has replaced the Spiderman that Dr. Mark took off.
After this, Michael picked a Charlotte Bobcats bouncey ball from the Charlotte Bobcats Brave Box.

Thanks for the posts! It is good to hear from you!
Peace!

Sunday, November 6, 2005 11:23 PM CST

Michael is doing well. We hope you are too.
We will let you know when we have something that changes, most days are the same so sorry for the
boring posts.

Sunday, November 6, 2005 3:45 PM CST

One Hundred Fifteen days post translpant, Michael Patrick is doing well.
The week seems to have flown by! Grandma Jo visited us Wednesday through Friday, and it was good to have her around. She and I were able to 'get away' all of Friday morning and enjoy some grown up time, & that too was quite nice. Here (for us) and in Charleston (for her), we were all (or each) happy to have a full Saturday to enjoy after a free but busy Friday. And what a beautiful Saturday it was!
Sunday has been equally pleasant. As for Michael, he had a day full of rest and play and food and good company.
Nothing much has changed about his health. On Thursday, it was strange for me not to know what "his numbers" were. We didn't do labs on Thursday, and it is only the second week on the once a week schedule. Tomorrow morning will be a Blume Clinic day. Michael is glad. He likes going to clinic, and I certainly am glad he does.

Did you see the Fantastic Four photos? They are there, and you may have to scroll. Luckily I didn't mess things up on Dave's photo page! And, if you're seeing this, I didn't mess anything up permanently! Just think of it as a new normal. A "for now" look.

Micahel Patrick is thriving! It's all good.

Tuesday, October 25, 2005 10:31 AM CDT

phew

Surgery Success!

Along with Mom, Dad, and Thomas, Michael Patrick walked out of the Children's Health Center at around eleven o'clock. I bet nobody that saw him would have guessed he just had surgery! He is feeling "fine", and ready for PIZZA!

So, now he has ONE double lumen Central line, only! Ah Progress!

Dad was happy to see and talk with Dr. Burgos, who was also very excited.

Today is a good day. All is well. We'll keep you posted.

Monday, October 24, 2005 8:14 PM CDT

Monday update:

Michael's line removal surgery is scheduled for 9:00 AM (Eastern) Tuesday.

Thank you for holding him in prayer

Monday, October 24, 2005 1:36 PM CDT

Day 102 Post Transplant

Today's 100 day studies visit went very well. Lots of labs were drawn (17 tubes), and we'll get results as they come in. The ones we did get look really good, including a white blood cell count of 5.9! He had to pretend to blow out candles for Ms. Julia on the 2nd floor. Results were normal. When I told him about this test, he thought he had to do the Pentamidine tent, but this test has no yucky taste or smell. Michael Patrick is all about smells these days. Not only did he not have to do the tent (I called it astronaut training - that's an other story), but now he has an oral medicine to replace that breathing treatment, so he won't have to do that treatment again. I hope he likes the smell of the PO (oral med)!

Michael Patrick was a really big boy(He weighed 13.9 kg, but that isn't what I mean) and asked to stand up for his chest X-ray (instead of sitting on the table). We didn't hear about how the X-ray looked, but we would have heard if there were issues of concern.

We missed some of our favorite people, but with such a great team we cannot complain. It was good to see the patient families and staff who were around!

The single lumen line is going to come out tomorrow. (I can call after 4PM to see what time.) If it isn't too late, we'll head back to Charlotte after he recovers from the anesthesia.

That will leave him with one double lumen line, back in Charlotte, going to Blume clinic once a week, or once every other week.

Thomas is recovering nicely from his illness, and should be back in school on Wednesday. He can't wait to go out in the garden.

Thursday, October 20, 2005

Hi everyone,
I am happy to say that Michael's bilirubin is back to .4
and Dr Martin has canceled the ultra sound, his liver #'s
that had doubled in a few short days have also returned to normal. Unfortunately Thomas has strep throat and had to get a shot in his bottom for his sixth birthday, and we have had to keep him isolated on a diffrent floor all day. Thomas had a 101.8 temp yesterday and Michael's temp was 99.3 last night the fellow at Duke told us to take Michael to the ER if his temp hits 100.4 last night and we were prepared to do so, then Michael's temp leveled off over night and we thought we were ok. At dinner time tonight Michael's temp went back up to 99.6, he is acting fine but we are in watch and pray mode at this point. Michael was seen by Dr Mogul today and his blood work looks good so we hope all goes well and we will bring him to Durham for his hundred day studies on Monday. We will keep you posted. Thanks for being available Meg we appreciate you.
Mike & Jean

Thursday, October 20, 2005 6:31 AM CDT Day Plus 98

First, the culture that was done (at the exit site of his double lumen line) a week ago was Negative. That is what we expected (it looked worse through the dressing than it really was), and it is good news! Sorry we didn't tell you Monday, but we were distracted by other things.


Today Thomas turns SIX. We previously thought he would be able to escape medical surroundings on his birthday since it is day 98 and we knew we'd be outpatient. He was scheduled to be in school today. However, he is going to go see his own doctor instead. At dinner last night, he said he was not hungry & that his head hurt & he needed to lay his head down. A little while later he felt very hot; 101.1 degrees. He took Tylenol and went to bed, but not in his own bed in the room he shares with Michael! We'll keep them away from each other as best we can. So, as soon as the Pediatric Practice opens, they'll hear from us & Thomas will need to be seen.

Michael is scheduled for a 10:30 visit at Blume Clinic. We knew Monday, that he seemed to be fighting some sort of infection. They will look again at his blood in a microscope smear, along with getting the usual counts, etc.
His pain complaints since Monday have been limited to one aching neck and a couple mentions of his back. "My back is splitting" is what he said once. Usually rubbing the area is helpful if he isn't easily distracted. He hasn't had Tylenol because I do not want to mask any fever. He threw up Wednesday morning, but went right back to acting fine and eating. He eats about as much as he used to eat, but that wasn't ever what anyone could call a lot. Well, maybe PBMTU families would. I hope he breaks the scale trend by being anything over 13.2 kg today.

Last night was pretty stressful. When Michael's temperature was 99.3, Mike called the PBMTU Fellow on call. She said that if it went to 100.4 degrees, we were to take him right to the Emergency Room. So, throughout the night, we checked his temp. It went up to 100 just after the phone call, and then it came back down and stayed low. Thank GOD!
Looking back, I guess it was only scarey for a short while, but it didn't seem like it at the time. By the way, Michael's normal temperature is somewhere in the high 95 to mid 96 range.

So, today should be interesting. Tomorrow, Michael will have his ultrasound of the bili area (liver, gall bladder,..). I guess there's a chance that resuming the Ursodial (AKA actigall) helped so much that they call off the ultrasound, but I would be surprised if they didn't want it anyway.

Overall, things are good here. I think we will need sweatshirts for our trip to Durham. Happy Autumn!

Your prayers are so appreciated!

Monday, October 17, 2005

Hi everyone,
Michael is doing ok but he complained of pain in his neck
last night and said his chest and arms hurt this morning.
We did not have to make a special appointment because we have been seeing the doctor every Monday and every Thursday.
He was checked and as usual his blood work was done. Dr Bryant said he may be sore from activity or he may have some
type of virus. He seems to be doing well. His blood work did reveal that his bilirubin has gone from .5 to 1.5 this week and some of his liver enzymes have doubled so they have
added actagul to the many medicines he already takes. Michael has been on and responded quickly every time he has
had to take this medicine.
Michael has to go back to Duke for his Hundred day studies
on the 24th. Dr Martin has been in touch with the doctors
in Charlotte since he has been back in his own home and any
changes have been approved through him so we have confidence
that Michael will continue to do well.
Because Michael's liver seems to slightly out of wack he will have an ultra sound Friday morning and we should know
the outcome by the afternoon. We will keep you posted with his progress.
Mike

Thursday, October 13, 2005 9:08 PM CDT

Day Plus 91

Michael Patrick had a good day today. Overall he is doing well. Thomas went with him to Blume Clinic, as there was no school today. Michael's blood pressure was elevated a bit. No connection, I'm sure. Maybe it is due to high level of Cyclosporine. We (meaning myself, and the great folks @ Duke who conditioned me) want the level between 150 and 200. It was 290! So, Angela says Dr. Martin wants us to cut the (Q12) dose back from .35ml to .25ml. Now, I didn't think of it until now, but that is perfect pill dose. hmm... Nope! I'm not giving that an other thought. ha ha I'm thinking the dose may change, and we already have a bottle of the liquid- a fairly large supply for such small doses, I must say.

We met Dr. Bryant, and she looked Michael over well. He didn't mind much, except when she was blocking his view of the Bearinstain Bears on the TV.
He wasn't happy though,when Nurse Angela used a cotton swab on his double lumen line exit site. It had some fresh blood there that wasn't there last night & I mentioned it. It actually looked kind of oozey through the dressing, so Dr. and nurse decided to do a culture of it. Angela said she could lift just a portion of the edge and stick in the swab without taking the whole dressing off. That's because dressing changes are so traumatic for our little trooper, and Blume doesn't have the picture frame dressings we like.

(Thanks, Daisy, for getting us to try those white edged oval tagaderms! We've used them ever since. Thanks, Denise at Duke's Pharmacy for special ordering them for HemOnc & PBMT families! And, for telling me the style is called picture frame.)

Once the dressing was partially lifted, and Angela could see it clearly, she didn't think it was bad. She is guessing the culture will be negative, but in this transplant journey we take no precaution lightly.

He only weighed 13.6 kg. I've heard that weight loss is not unusual in PBMTU kids. They do not absorb as much, and extra calories are needed. When weaning the TPN, Dr. Martin's big concern was not only how much he was eating, but also absorbing. That is something I can't really see though, so we just keep having him eat. He gets anything he asks to eat, with little exception. He had a hard time seeing grapes recently. He was so mad at me for not letting him eat them. There's just nothing I can do about cooking a grape! It wouldn't remain a grape at all. I couldn't argue with him. After all, grapes are NOT the same as grape jelly OR raisins! Marshmallows are good though! Hot chocolate optional. Tonight he got so excited about drinking soy milk. Who'd o' thought?

T H A N K
Y O U
F O R
Y O U R
C O N T I N U E D
P R A Y E R S ! ! !


Tonight I am praying for Kim's grandBaby Emma Sue, who doctors want to be born tomorrow, two weeks early.

Have a great Friday!

Wednesday, October 12, 2005 5:32 AM CDT

Tuesday morning Michael Patrick met one of his classmates. For a few days, Michael's brother, Thomas, and Michael's classmate, Tommy, will share a bus stop. This temporary bus stop is much closer to our home than the stop he's been using this school year. Soon, Thomas will have his bus stop officially switched back to our neighborhood. That will be really nice, and will feel normal again. Thanks to all involved in making this happen!
It was nice to meet Tommy. The boys didn't talk much. You know Michael had to keep his distance, but he was very excited to meet a classmate. He loves to talk about his class, and the fact that he will go there Someday. He says he can't wait, but we all know he can.
It was nice to see the other children too, especially Abigail. I think we'll get ready and go see them again.
:0)

Have a great day!

Monday, October 10, 2005 8:24 PM CDT

Thanks for the photo, Dave!

Michael's counts each look good. (3.8 white blood cell count) Michael looks good. He weighed in at 13.9 kg this morning. He told me he thought big for Daddy when he was on the scale.
He didn't see a doctor today. Mike says his doctor day will be on Thursday here.

The funny thing is that Michael Patrick did not want to leave the clinic today. He insisted on having the book completely read to him by the ChildLife specialist. Then, when he was ready, he made sure to stop at "the brave box" for one item of his choice. He selected a black bouncey ball with The Charlotte Bobcats logo on it. He is excited about the Bobcats. He must have been discussing them because Dad handed me a printout of their schedule. None of the games will be televised for a while, but you can bet Michael will be cheering them on when he gets the chance.

For now, Way to go, Panthers! Right?
and
Let's Go Yankees!

Saturday, October 8, 2005 3:02 PM CDT

Michael Patrick is still doing well.
We really do not have many medical facts to share these days. We will be having him checked twice a week for now. It will still be Monday & Thursday, as it was in Durham. The same things will be monitored as well. Such as blood counts, weight, blood pressure, what he looks like, including skin, mouth, eyes,etc.
It may not get boring for us to go to these check-ups because it is so vital that he stay healthy and on track for full recovery. Just the same we may not be updating much, and certainly not every day. As much as we hope to continue to be able to say, "Michael Patrick is doing well", actually typing it each day just might be too much, if you know what I mean. No offense!
Mike and I have decided to change internet providers too. This means that each of our e-mail addresses @carolina.rr.com will no longer be valid. In Durham, we could only view our mail, uncertain if it was all of it, and we were not able to send or respond at all. Knowing that, most of you have gotten used to using other methods of communicating with us. For the ones who still use our carolina.rr address, we ask that stop, and be aware that soon we will no longer even view anything sent. The e-mail address below can still be used. It just might not be checked as often as before. If there is a time sensitive issue, it is always best to reach us by phone. Otherwise, there's nothing wrong with remembering "no news is good news".

We appreciate each of you, and humbly ask that you continue to remember us in your prayers.
Thanks,
(Jean, for -)
Mike and Jean

Thursday, October 6, 2005 10:46 PM CDT

We went early to the appointment so the nurse could draw blood to get the Cyclosporine level. It has to be drawn at the eleveth hour, if you will. When there is none fresh in his system they get the therapeutic level. It clarifies how his body is absorbing the drug. We still do not have the level, but expect a call tomorrow. That is not unusual for this lab test.

As I was driving over to Blume Clinic this morning, I realized why I hadn’t thought to ask how to deal with a late appointment messing up the timing of the Cyclosporine dose. It was a 10:30 appointment so it didn’t seem late until 8:00 this morning. Hmm If I had given him the 8:00 AM dose as usual, we would not have been able to get an accurate check of the drug level in his blood when the nurse drew labs at the clinic. See,i hadn't asked because what I was used to- the newest normal we’re leaving- is that I would draw blood right before I gave Michael the dose of Cyclosporine, and Mike would drive over to North Pavillion & drop the labs off. Michael's dose stayed on schedule, long before our clinic visit. Because Mike and I drew and dropped our own labs, it wasn’t an issue.
Now the lab is way across town (at the clinic)…
So, Dr. Mogul and I agree that on Monday, I will draw one tube (the light purple) myself, just before dosing (as it needs to be for the level). Then I’ll bring it with me to the clinic and the nurse will draw the other labs needed. There is no reason for me to draw the others because they test right there in the clinic. No chance of coagulated reasons for redrawing!

The clinic here is very small and very nice. The staff could put the best welcome wagon crew to shame. They are not our Duke family, but they really made us feel like we should make ourselves at home there. I guess, after all it is the new normal, and will feel home enough soon. There is a kitchen with snacks, and Coffee! I miss my coffee pot friends.
Michael warmed up pretty quickly to the ChildLife Specialist, chatting away. Soon he had stickers for each of his siblings. (They’re still in my bag, so they’ll get them tomorrow or Saturday.)
He met a boy his age. My heart smiled and cried, thinking of how AJ had welcomed us to his play area.
It rained all day in Charlotte. I thought it fitting.
The scale was not our friend today; 13.7kg is all it registered. All of his counts look good though, and he has been feeling well. He had a good day. His WBC is 3.9, and instantly I have to remind myself that he doesn’t need GCSF unless it dips below 3.
“N o o r r mm a LL”
He ate a lot this evening. I thought I saw Chef Boyardee become his new favorite. He enjoyed that spaghetti! Later, he asked for Honey Nut Cheerios in milk (for maybe the tenth time in his life) so I gave him some. I guess that was a problem, because he got that look and requested GingerAle. Ginger Ale wasn’t helpful in keeping it (all) down. Fortunately I hadn’t given him all of his evening medications yet. He felt fine again, took his meds and soon went to bed. Then within ten minutes he wanted a “midnight snack”. He chose an Eggo waffle. “Plain”! Yum

Thursday, October 6, 2005 7:59 AM CDT It is a sad day

Happy Birthday ! !

Michael Patrick is doing well.
I'm holding his cyclosporine dose so we can get the levels checked. We're off now to get there early for his appointment.

Tuesday, October 4, 2005 2:28 PM CDT

We are planning to join the rest of the family this evening, and Michael will have a clinic visit in Charlotte on Thursday morning.
Now there is no news like We're going home! How on Earth can I top that one? I cannot, but here's the scoop, just the same:
Michael had a bath and enjoyed it! He had taken up the habit of crying through me washing him standing up, sometimes not even near the tub. ha ha Today he relaxed in the tub enough to lie down on his back. The water doesn't reach his chest because it is shallow. I hold a washcloth over his lines and dressings to assure they keep dry. He got good and wrinkly soaking in bubbles. Funny thing is, as Dr. Martin would say, "He [still] looks dirty", thanks to the post transplant crumbly tan. Yet he smells so very nice. I can't remember the last time I used shampoo on him, so it was nice to do today. His hair still feels so wonderfully soft; better than a baby duck, I bet. I didn't tell him that his hairline has spread so as to include his eyebrows, and he has sort of a fur covering his shoulders. Just an other small side effect that is so well worth it.

After the bath, I changed his dressings. Notice I did not say "we". Those of you who have never changed a child's central IV line dressing, will never know what a big deal it is, so I won't try to explain. Just know that I am happy to have gotten it done well. Now I know that, in the future, he can squeeze one of my hands if no others are handy. No pun intended.

He asked me to pick what he wears today, but agreed only to the third pair of pants, and then insisted that I pick his yellow shirt. Ha ha

Monday, October 3, 2005 5:56 PM CDT

The clinic visit went very well. Michael was only a little cranky at first. He weighed in at 14.0 kgs. I guess all that activity burns some major calories, because it seems like he ate more over the week-end than he ever used to eat.
All of the chemistries and levels are in good range. This was the last day scheduled for cytogam (immune globin), and now he will get it PRN. So he'll only get it (or get IVIG) if the numbers go down enough to need it. He had been getting it once each week, so we'll see how it goes. Of course we'll be seeing in Charlotte!

I went to the pharmacy to get dressings that neither Duke Infusion or PSA can provide, while Michael and his teacher read to each other. I got to see some friends there.

I thought Michael and I might pop upstairs to see folks one more time, but by the time we finished with everything we were way too "Exhausted". We had a long wait one the third floor to get his pre-op visit done. The single lumen line removal is scheduled for when we get back in three weeks. I'm glad we don't have to do the pre-op waiting then.
Michael actually slept through most of the waiting and all of the screening. He let us sit him up & took a deep breath though.

All in all Michael is a best case scenerio kind of kid.
Thanks be to God!

Sunday, October 2, 2005 8:59 PM CDT

Happy October!

Michael is great!
I think he is awake too late since he has an early morning appointment tomorrow, but he had a nap in the van on the return trip to Durham. We're looking forward to this clinic visit tomorrow. Monday is our "Doctor day", and we expect to get the thumbs up for three weeks off.

He was down to 14.1kg on Thursday, and I am curious if all the good eating he did in Charlotte will make a difference.

Thank you for continued prayer!

Thursday, September 29, 2005 12:01 AM CDT

Michael Patrick is doing well. His white blood cell count is 4.5, which is "Normal" by any standards.
We had a bit of a wait in clinic. We took a walk up to 5100 to find Ms. Michelle. Well, who was with her but folks from the Charlotte Bobcats! Michael shook hands with them all. Henry, Matt, Helen from the Charlotte Sting, and Dell Curry! Jonathan did most of the talking. I didn't tell him I used to watch Dell play every chance I got. I still miss the Hornets, and now I'll be more open to having the Bobcats in town (as in Charlotte, ha ha). Matt told Michael that he is Number Thirteen. Michael says he can't wait to see the Bobcats on TV! I told him that I can't wait until he can go to a game in person; in a crowd. Of course we can all wait, because we must.

We got to see some 5100 staff we missed yesterday. That was nice too. We also saw Angie! She looks good, and is wearing the cutest button ever. I think she had posted that photo on AJ's site for a while. I also officially met David, though we saw him yesterday with Robert and Brenda in the ACS Hope Lodge Connection.

I guess that is all we are sharing for now. We're going to put some boxes - of toys ;) - in the van and head South for a couple of days.

Have a great week-end!

Wednesday, September 28, 2005 9:58 AM CDT

Michael P. is doing well. He has taken to staying up as late as his little body will let him, watching movies, and munching on dry cereal. Then saying, "I'm tired" when he is about to drop. It is kind of cute. It is so good to have no pumps and tubing connected to our little guy. I think we all sleep better.

For supper last night, he ate an entire hot dog. He hasn't done that since February, I think. He has switched from ketchup (pre-transplant) to mustard because -- get this -- ketchup is "too sour". Taste buds simply CHANGE from the treatments, and there is no logic to be found for those of us who haven't been there.

He has been taking his oily cyclosporine plain, straight out of the syringe. He chases it with Ginger Ale or Juicy Juice. I woke him yesterday and today to have him do this, and he went right back to sleep each time.
When he wakes up and gets moving today, we plan to go over to 5200 (the blood and marrow unit) to say "hello" to everyone, and "happy birthday" to Joseph Brown. He is ten today. We remembered the date easily because Joseph and Jo-Ann share this birthday. Happy Birthday, Ma!

Monday, September 26, 2005 3:35 PM CDT

Day plus Seventy-Four!
This has been a really good day! We had lots of good company at the clinic, and lots of good news too.

Can you say "DC the TPN"? It doesn't matter because Doc & Deb can!! Yes, I'm giddy about it! So, last night's infusion of TPN was our last. Michael weighed 14.7 woohoo kg.
Not only are we finished with the Curlins, but the Bards too. I think most of our friends switched to oral Cyclosporine pretty early on, but we are doing that today. He was not really doing well enough with the other POs to take on the fight of the oily stuff. Cyclosporine is suspended in peanut oil, so it isn't the most fun. I'm going to try it straight from the syringe to his mouth before I try mixing it in anything. I know some of you knew we were trying to get him to swallow pills so it wouldn't be a fight. Really, we were trying to get him to swallow M&M Minis for practice. Well, we didn't have much luck with all of that. I think he had fun faking us out, and chomping the candy! Plus, the dose he is on does not really match the doses of pills available. He is right between one and two little pills, so today I am completely fine with the oil. I hope that doesn't change after using it! HaHa He takes his magnesium without mixing it, so I feel confident. Of course, we can DC the Ursosiol today. That was working well for a chaser for the mag. (Ursodiol is the one that is "Not Actigall") His bili count is back in range.
All of his numbers look good. We have to drop one lab in the morning for chemistries.

In addition to the great nurses and Doctor Martin, it was great to see Dr. Eugene, and Doctor Burgos, and Kay, and Emily, and Tuwana, and Mary Margaret, and Lexie, and the biggest surpirse of all was seeing Trevis and his Mom & Mabel. Trevis has HAIR, and the biggest smile EVER! What a joy to see! I'm very pleased that they stopped by! WOW!

Now, you would think that this is gift enough, after all, Mary Margaret broke out Michael's project for a bit more progress, and Lexie let him keep the BLACK Play-Doh they had such fun with. Yet, there is more! Michael has had "Go to a restaurant to eat" on his "Someday" list for a long time. Our approval of this idea was under the conditions that we sit OUTSIDE during the "off hour" to avoid...well, you know the drill by now. We went to Spartacus, right in front of Target (where he isn't allowed--sorry Stephanie).

Flight Certificates arrived for Joey and Jewel today. Thanks, Larry! Now if we could only get our mail forwarding cancelled!

Okay, I didn't mean for this to be such a time sponge! God Bless ya!

Sunday, September 25, 2005 9:20 AM CDT

I tried to stay away from the computer, but really, there are too many other updates to read. I figured maybe an update should be here too. The funny thing is that you already KNOW our update. It goes something like this:
There's no place like home! There's no place like home!

Seriously, I think it is good for each of us to ease ourselves back into this "big family" thing. These week-ends are great for that. It is so strange how we adapt to each "new normal" that comes along. Normal "just ain't what it used to be". When we remain focused on what IS important, the details really aren't.

Michael Patrick slept right through his Curlins beeping at 7:15. (Oh, sorry. I mean his TPN pumps for non52 folks.) He slept through the obnoxious Bard beeps (they sound like an imitation of a car alarm!) just now as his cyclosporine infusion ended. Even Thomas hasn't made him wake up. ha ha
There's no place like home.
He has been having fun, and staying well.

Can you believe it? We only have three more clinic visits! Monday, Thursday, and Monday! Of course he will continue to be checked by Dr. Martin every three months, beginning with Oct.24th, but we will be Home Sweet brick house Home before you know it.

There are not enough THANK YOUs in the world to express our gratitude to the many folks making our life bearable. You know who you are. We appreciate you!

"God bless us every one"

Thursday, September 22, 2005 1:14 PM CDT

Happy Autumn!

Michael is doing well Seventy days post transplant.
He weighed in at only 14.1 kg. Ms. Benita was kind enough to humor us (meaning me) and let him get on the scale again, and "think BIG". It did bump up to 14.2, but nothing like last time I told him to think BIG! ha ha. I guess that kind of thing has only ever worked once. ha ha That must be in History somewhere, but it was way back on 5100, so I'm not going to look it up. No big deal.
Nurse Debbie isn't concerned about the weight loss like I thought she would be. (phew!) She expected the loss because of the decrease in TPN. The idea is to discontinue (DC) the TPN on Monday.
So here we are now, waiting for our delivery of TPN to arrive from Duke Infusion. Then we'll be on the road to Charlotte. WooHoo!

Thomas isn't feeling well, so we aren't sure if the blood brothers will be hugging this week-end. We sure hope Thomas feels better soon, either way!

Last night, Michael Patrick gave us a bit of a scare. He had fallen asleep on the couch while his Cyclosporine was running. I figured I'd move him after unhooking the line. Before the infusion was complete, he started crying. This could mean anything and he wasn't saying at first. Sometimes he panics when his bladder needs to be emptied, but once we knew this wasn't the case we pushed him to tell us what was bothering him. "Itchy! Itchy!", he manages to say between sobs. Sound switched to slow motion. Michael J. is already waiting for the Fellow on call to return the page, and trying to talk Michael into calming down. I get the boy, along with the running pump, to the bathroom to run a bath.
Michael Patrick eventually was able to explain where he was itching and that it was mostly his hands and feet. Okay, 5200 families already know the awful thought crossing my mind at this point. Though I've never seen it, I know that the Graft Verses Host Disease rash is said to begin on the hands and feet. YIKES!! This can't be!
By now, Dad has left the apartment after having spoken to the Fellow. He is on a mission to get Children's Benadryl! I first think how silly it even is that we do not have any on hand already. Then I realize that we have lots of medicines here for him, and he hasn't had any need until now for the Benadryl. I feel it is okay that we don't. (Though part of me wants to advise everyone with a child to go buy a bottle just in case, and spend the money each time it expires - - just in case) Of course CVS is closed, as is Eckerd. Mike calls to explain the delay as he must now pass the apartment and beyond to try Target - closed!- and finally Wal-Mart was open! phew!
Meanwhile back at the apartment, Michael has calmed down some and as he sits on my lap in a towel and a shirt, I can see the teetiny little bumps everywhere on his legs and arms. His hands and feet don't look so obvious (comfort?) to me. He is such a good boy; he tries very hard to refrain from scratching. We have to get "POPPY! POPPY!" on the phone to assure Michael that Pop is coming back with medicine to stop the itching SOON.
He did.
Michael took all of his oral meds that we had for him (4 liquids at night these days) since he had fallen asleep without them. We were still in the "Down the hatch" process when Pop returned with the magic formula we so craved. AH! Relief! GoodNight!
Michael Patrick slept through the night. In fact we overslept, so that is probably why we are still in Durham. I brought the labs in to clinic with me (once it is after 9:30 am, I've heard there is no point in dropping them) and had to wait for the results.
Michael had a class with Ms. Lexie in the fishtank (isolation waiting room) while we waited to be seen.
And guess what?
As Michael got dressed this morning, I saw nothing itchy. Nurse Debbie looked with me in the exam room and we agree there is nothing there. Hmm. How cool is that?

Oh, and in case all of this wonderful Michael stuff isn't enough for you:
Uncle Joe is going to have his port removed. No treatments are needed for now. He is in remission! Those of you who know the story know how completely amazing that is!

Greg went back to his own bed in Delaware Monday! Like us, Duke is "home" too to him, but his bed is in Delaware.
Michael Henry is going home to Asheville, and a new bathroom!
Kate is doing great, but she needs to start eating. (Please, Kate.)
Frankie(pants) had a line removed moving one more step closer to Connecticutt.

Oh, speaking of lines, nurse Debbie found out that Michael Patrick will be able to get his single lumen line out on Oct. 25th. That means no delay in leaving in two weeks, and no special trip back up either. If you heard it had been scheduled for earlier in October, that didn't work out and is no longer the case. So, after Oct. 25th, he'll have only one double lumen central line.

It's all good!

God Bless you!

By the way, this update should last all week-end, don'tcha think? No news is good news. Have a great week-end!

Thursday, September 22, 2005 1:14 PM CDT

Happy Autumn!

Michael is doing well Seventy days post transplant.
He weighed in at only 14.1 kg. Ms. Benita was kind enough to humor us (meaning me) and let him get on the scale again, and "think BIG". It did bump up to 14.2, but nothing like last time I told him to think BIG! ha ha. I guess that kind of thing has only ever worked once. ha ha That must be in History somewhere, but it was way back on 5100, so I'm not going to look it up. No big deal.
Nurse Debbie isn't concerned about the weight loss like I thought she would be. (phew!) She expected the loss because of the decrease in TPN. The idea is to discontinue (DC) the TPN on Monday.
So here we are now, waiting for our delivery of TPN to arrive from Duke Infusion. Then we'll be on the road to Charlotte. WooHoo!

Thomas isn't feeling well, so we aren't sure if the blood brothers will be hugging this week-end. We sure hope Thomas feels better soon, either way!

Last night, Michael Patrick gave us a bit of a scare. He had fallen asleep on the couch while his Cyclosporine was running. I figured I'd move him after unhooking the line. Before the infusion was complete, he started crying. This could mean anything and he wasn't saying at first. Sometimes he panics when his bladder needs to be emptied, but once we knew this wasn't the case we pushed him to tell us what was bothering him. "Itchy! Itchy!", he manages to say between sobs. Sound switched to slow motion. Michael J. is already waiting for the Fellow on call to return the page, and trying to talk Michael into calming down. I get the boy, along with the running pump, to the bathroom to run a bath.
Michael Patrick eventually was able to explain where he was itching and that it was mostly his hands and feet. Okay, 5200 families already know the awful thought crossing my mind at this point. Though I've never seen it, I know that the Graft Verses Host Disease rash is said to begin on the hands and feet. YIKES!! This can't be!
By now, Dad has left the apartment after having spoken to the Fellow. He is on a mission to get Children's Benadryl! I first think how silly it even is that we do not have any on hand already. Then I realize that we have lots of medicines here for him, and he hasn't had any need until now for the Benadryl. I feel it is okay that we don't. (Though part of me wants to advise everyone with a child to go buy a bottle just in case, and spend the money each time it expires - - just in case) Of course CVS is closed, as is Eckerd. Mike calls to explain the delay as he must now pass the apartment and beyond to try Target - closed!- and finally Wal-Mart was open! phew!
Meanwhile back at the apartment, Michael has calmed down some and as he sits on my lap in a towel and a shirt, I can see the teetiny little bumps everywhere on his legs and arms. His hands and feet don't look so obvious (comfort?) to me. He is such a good boy; he tries very hard to refrain from scratching. We have to get "POPPY! POPPY!" on the phone to assure Michael that Pop is coming back with medicine to stop the itching SOON.
He did.
Michael took all of his oral meds that we had for him (4 liquids at night these days) since he had fallen asleep without them. We were still in the "Down the hatch" process when Pop returned with the magic formula we so craved. AH! Relief! GoodNight!
Michael Patrick slept through the night. In fact we overslept, so that is probably why we are still in Durham. I brought the labs in to clinic with me (once it is after 9:30 am, I've heard there is no point in dropping them) and had to wait for the results.
Michael had a class with Ms. Lexie in the fishtank (isolation waiting room) while we waited to be seen.
And guess what?
As Michael got dressed this morning, I saw nothing itchy. Nurse Debbie looked with me in the exam room and we agree there is nothing there. Hmm. How cool is that?

Oh, and in case all of this wonderful Michael stuff isn't enough for you:
Uncle Joe is going to have his port removed. No treatments are needed for now. He is in remission! Those of you who know the story know how completely amazing that is!

Greg went back to his own bed in Delaware Monday! Like us, Duke is "home" too to him, but his bed is in Delaware.
Michael Henry is going home to Asheville, and a new bathroom!
Frankie(pants) had a line removed moving one more step closer to Connecticutt.
Kate is doing great, but she needs to start eating. (Please, Kate.)

Oh, speaking of lines, nurse Debbie found out that Michael Patrick will be able to get his single lumen line out on Oct. 25th. That means no delay in leaving in two weeks, and no special trip back up either. If you heard it had been scheduled for earlier in October, that didn't work out and is no longer the case. So, after Oct. 25th, he'll have only one double lumen central line.

It's all good!

God Bless you!

By the way, this update should last all week-end, don'tcha think? No news is good news. Have a great week-end!

Thursday, September 22, 2005 1:14 PM CDT

Happy Autumn!

Michael is doing well Seventy days post transplant.
He weighed in at only 14.1 kg. Ms. Benita was kind enough to humor us (meaning me) and let him get on the scale again, and "think BIG". It did bump up to 14.2, but nothing like last time I told him to think BIG! ha ha. I guess that kind of thing has only ever worked once. ha ha That must be in History somewhere, but it was way back on 5100, so I'm not going to look it up. No big deal.
Nurse Debbie isn't concerned about the weight loss like I thought she would be. (phew!) She expected the loss because of the decrease in TPN. The idea is to discontinue (DC) the TPN on Monday.
So here we are now, waiting for our delivery of TPN to arrive from Duke Infusion. Then we'll be on the road to Charlotte. WooHoo!

Thomas isn't feeling well, so we aren't sure if the blood brothers will be hugging this week-end. We sure hope Thomas feels better soon, either way!

Last night, Michael Patrick gave us a bit of a scare. He had fallen asleep on the couch while his Cyclosporine was running. I figured I'd move him after unhooking the line. Before the infusion was complete, he started crying. This could mean anything and he wasn't saying at first. Sometimes he panics when his bladder needs to be emptied, but once we knew this wasn't the case we pushed him to tell us what was bothering him. "Itchy! Itchy!", he manages to say between sobs. Sound switched to slow motion. Michael J. is already waiting for the Fellow on call to return the page, and trying to talk Michael into calming down. I get the boy, along with the running pump, to the bathroom to run a bath.
Michael Patrick eventually was able to explain where he was itching and that it was mostly his hands and feet. Okay, 5200 families already know the awful thought crossing my mind at this point. Though I've never seen it, I know that the Graft Verses Host Disease rash is said to begin on the hands and feet. YIKES!! This can't be!
By now, Dad has left the apartment after having spoken to the Fellow. He is on a mission to get Children's Benadryl! I first think how silly it even is that we do not have any on hand already. Then I realize that we have lots of medicines here for him, and he hasn't had any need until now for the Benadryl. I feel it is okay that we don't. (Though part of me wants to advise everyone with a child to go buy a bottle just in case, and spend the money each time it expires - - just in case) Of course CVS is closed, as is Eckerd. Mike calls to explain the delay as he must now pass the apartment and beyond to try Target - closed!- and finally Wal-Mart was open! phew!
Meanwhile back at the apartment, Michael has calmed down some and as he sits on my lap in a towel and a shirt, I can see the teetiny little bumps everywhere on his legs and arms. His hands and feet don't look so obvious (comfort?) to me. He is such a good boy; he tries very hard to refrain from scratching. We have to get "POPPY! POPPY!" on the phone to assure Michael that Pop is coming back with medicine to stop the itching SOON.
He did.
Michael took all of his oral meds that we had for him (4 liquids at night these days) since he had fallen asleep without them. We were still in the "Down the hatch" process when Pop returned with the magic formula we so craved. AH! Relief! GoodNight!
Michael Patrick slept through the night. In fact we overslept, so that is probably why we are still in Durham. I brought the labs in to clinic with me (once it is after 9:30 am, I've heard there is no point in dropping them) and had to wait for the results.
Michael had a class with Ms. Lexie in the fishtank (isolation waiting room) while we waited to be seen.
And guess what?
As Michael got dressed this moprning, I saw nothing itchy. Nurse Debbie looked with me in the exam room and we agree there is nothing there. Hmm. How cool is that?

Oh, and in case all of this wonderful Michael stuff isn't enough for you:
Uncle Joe is going to have his port removed. No treatments are needed for now. He is in remission! Those of you who know the story know how completely amazing that is!

Greg went back to his own bed in Delaware Monday! Like us, Duke is "home" too to him.
Michael Henry is going home to Asheville, and a new bathroom!
Frankie(pants) had a line removed moving one more step closer to Connecticutt.

Oh, speaking of lines, nurse Debbie found out that Michael Patrick will be able to get his single lumen line out on Oct. 25th. That means so delay in leaving in two weeks, and no special trip back up either.

It's all good!

God Bless you!

By the way, this update should last all week-end, don'tcha think? No news is good news. Have a great week-end!

Wednesday, September TwentyFirst

The new photos are great. Right? Michael looks great, and aside from some lingering episodes of emesis, he is!
I'm guessing that when you look at the photos,
you may be amazed at the changes in him. For me, it is sometimes so hard to believe that this is the same little boy who went to the zoo in February; the same little boy I took to Myrtle Beach in March to see the drill team "march".
He even looks different from the current pictures posted. Mike and I are realizing that he is continually changing right before our eyes. The eyebrows and lashes are getting thicker, and darker if that is possible.
His personality shines through it all to remind us that he is still the remarkable little one so many find so easy to love at first sentence.

Today might be a sentimental one for some of us who lived through Hugo...We know we've been blessed...

We are anxious for a change of scenery and are looking forward to a boring week-end at home with the family.

Wednesday, September 21, 2005 1:02 PM CDT

The new photos are great. Right? Michael looks great, and aside from some lingering episodes of emesis, he is!
I'm guessing that when you look at the photos,
you may be amazed at the changes in him. For me, it is sometimes so hard to believe that this is the same little boy who went to the zoo in February; the same little boy I took to Myrtle Beach in March to see the drill team "march".
He even looks different from the current pictures posted. Mike and I are realizing that he is continually changing right before our eyes. The eyebrows and lashes are getting thicker, and darker if that is possible.
His personality shines through it all to remind us that he is still the remarkable little one so many find so easy to love at first sentence.

We are anxious for a change of scenery and are looking forward to a boring week-end at home with the family.

Monday, September 19, 2005 4:48 PM CDT

Dr. Martin says that Michael is doing well. He weighed in at 14.7 kg this morning - up from 14.6 at the last couple of checks. So he has not lost any weight even though the TPN has been decreased more than once. We are going to cut the TPN in half again tonight, and see how he is doing Thursday. Perhaps there'll be an other decrease for the week-end. Hopefully, he will be eating enough by Monday to cut the TPN out altogether! How cool is that?!! Trust me, it will be great because discontinuing TPN is a major objective of ours!!
His blood pressure was within the normal range (without any bp medication).
Today is day plus 67. We are still on the Monday & Thursday clinic schedule.
We may go home again this week-end if we like. (We like.) Then the next one too! Then, "...if he continues to do well..." on October 3rd, Dr. Martin is planning to send us home. Home for three weeks.
We already have an appointment for our "Day 100 studies", so we have to come back to Durham for that. Two to three days in Durham will be needed, depending on when the surgical team can arrange to remove the single lumen central line. (woohoo)
During those three weeks, we will need to be seen in the clinic in Charlotte at least once. Therefore some of this plan is a bit dependent on the doctor there. We already know and like him and do not expect any problems transitioning our care of Michael Patrick back to Charlotte. We will only need to bring him to Durham every three months after the "100 Day" trip.

How exciting!

Oh, and, in case we have to tell you:
We seriously enjoyed being in Charlotte as a family!!

Friday, September 16, 2005 7:47 PM CDT

Hi everyone,
Michael is doing great.The nurse practitioner, Debbie gave us a pass to Charlotte. We are happy to
be here, it is nice to be with the whole family. We will return to Durham on Sunday. Michael is eating more and has been more willing to take his meds lately.He is holding his weight and
having less trobule with his stomach.
Jean and I are not sure when Michael will be released back to Charlotte for good but he will be at day 100 on October 24th so may be around then if all continues to go well.
We will update the pictures shortly. We want you all to know that we know that we are being very redundant
as we ask for your continued prayers for Michael, Bryce Anderson, and every other family who has done or will have to do in the future what we are doing.
Thanks,
Mike & Jean

Wednesday, September 14, 2005 11:30 AM CDT

Michael is doing rather well. Life here at the Forest has become somewhat normal for the three of us. We've gotten pretty used to living in the ways that keep Michael safe and healthy. Our biggest challenge, of course, is avoiding germs of all types. We keep away from people, pets, swings, sand, direct sunlight, doorknobs, handrails, leaf blowers and dirt...the list goes on and on, ending with anything we haven't wiped with a disinfecting wipe or alcohol. Amazing how one can adjust.

Other than preventing infection, most of you know that our focus is currently on nutrition. Well, perhaps "nutrition" isn't quite the right word. We want calories in the kid! A pack of Smarties beats fresh grapes by far! It goes against some pretty basic good sense, but fresh fruit and veggies are NOT on the neutropenic/lactose free diet Michael follows. With luck, he will be able to enjoy Strawberry season by the time it rolls around again. For now, hot dogs and candy aren't a problem at all. He no longer likes ketchup, but mustard is good for several bites before it too tastes badand he tells us. There is really no word for it. Michael just holds his hand up (talk-to-the-hand style) and waves it as if it is shaking "no", while his face crinkles in effort not to even see the food any longer.
TPN (total parenteral nutrition, or "intravenous food in a bag") was started (as is routine) on transplant day. The length of time a patient stays on it depends on the individual. In Michael's case, it has been 63 days already, and we hope to get him to EAT real food daily, in amounts sufficient to discontinue the nightly bag feedings without ant further weight loss.
The formula has been changed three times, and on Monday it was agreed that the change would include decreasing the 12 hour dose to only 10 hours. My hope was (and is) that those who think TPN decreases appetite are correct, and the cut in TPN would allow for an increase in appetite. He cannot come off of it until he takes in enough calories on his own. He cannot possibly take in enough if he is unwilling to consume anything more than GingerAle and medicines (often by force). AND he must keep some of it down long enough for his body to absorb it. If he doesn't absorb what he takes in, all bets are off, so to speak.
When the TPN was running from 7PM to 7AM, he had no interest in food until about 7PM. (Imagine that.) Monday, we didn't start the bag until 10PM, allowing him to eat that evening. Tuesday he ate around 11AM! It wasn't much, and it didn't stay down, but we take this as a good sign, just the same.
It was a delight to hear Michael ask for food at 9:45 this morning. He ate some Cheerios and part of a "MsVicky bar" (that's a Trail Mix fruit and nut bar to most folks), along with JuicyJuice and some of his liquid meds. It is almost 12:30, and he is emesis free, meaning -JOY of JOY- it is staying down!
It is my dearest wish today that he will feel hungry again and again, and enjoy successfully feeding that hunger.

Thanks to each of you who continue to pray for Michael Patrick!!

Tuesday, September 13, 2005 12:40 AM CDT

Today is a great day!
Check it out!
<<<<<<<<<<<<<

Monday, September 12, 2005

Hi everyone,
Today is going well. Michael went to the clinic, and everything looks good at this point. His hemoglobin
was 7.9 so he recived red blood cells,they like to infuse
at 8 or less. It has been awhile since his last infusion.
His white count is 3.9 so he will get a dose of GCSF tonight
and tomorrow his white count will be much higher.Michael
actually asked if he could pick his dinner, he wanted
pizza, carrots and he is eating peaches while he waits.
We are still hoping to see him vomit less but this is a
process. Today is day 60, we have a long way to go but
Michael is a good patient.
We had a visit with Joey, Jewel and Paula & the big kids are doing fine. Thomas is with Tracy and John Webb and is doing well also. Jean and I want to thank the Webb's for doing the right thing even though they are working hard on their son's
new medical diagnosis and all that comes with it.
Thanks,
Mike & Jean

Monday, September 12, 2005

Hi everyone,
Today is going well. Michael went to the clinic and everything looks good at this point. His hemoglobin
was 7.9 so he recived red blood cells,they like to infuse
at 8 or less. It has been awhile since his last infusion.
His white count is 3.9 so he will get a dose of GCSF tonight
and tomorrow his white count will be much higher.Michael
actually asked if he could pick his dinner, he wanted
pizza carrots and he is eating peaches while he waits.
We are still hopeing to see him vomit less but this is a
process. Today is day + 60, we have a long way to go but
Michael is a good patient.
We had a visit Joey Jewel and Paula the big kids are doing fine. Thomas is with Tracy and John Webb and is doing well
also. Jean and I want to thank the Webb's for doing the right thing even though they a working hard on their son's
new medical diagnosis and all that comes with it.
Thanks,
Mike & Jean

Day 60

Monday is our "big clinic day". That is the day we usually see our Doctor in addition to our Nurse Practitioner.

Friday, September 9, 2005 10:44 AM EDT

Okay, we are pretty sure you can tell that we have been trying to find a new background for this page. Michael really wants SpiderMan, but we haven't found the best one. It has to be easier than we know, so hang in there as we make further attempts.

Michael Patrick's labs from Thursday show that his numbers are each moving in the right directions. We are able to keep him on the lower dose of the blood pressure medicine like we were hoping. He's on so many meds (four liquid orals, and one IV, plus the "melty med" for nausea) that any decrease is surely better on his little body. Not to be confused with the fact that some of them will absolutely be required through the first hundred days.

His weight was down to 14.6 kgs. yesterday. This thrills no one. He is actually back down to his St. Patrick's Day weight. His TPN has been changed in hopes that he will EAT MORE! The glucose has gone from 20o 15and the lipids have been cut in half. Now if he can beat the nausea, he should be hungry. That's our hope anyway.

He is growing eyebrows and eye lashes. They are very black, instaed of the sandy color we were used to seeing on him before.

Thursday, September 8, 2005 7:34 AM CDT

Good morning.
First, to clear up any confusion about clinic days. Last week, we were on the Mon/Wed/Fri schedule. This week, because his "coags" - coagulation numbers- were good on Monday, we were going to skip Wednesday and Friday, and replace them with Thursday. It all got really confusing because Mike took him in on Tuesday too. ???Parent panic??? Maybe, but we can't be too careful.

Michael was up a few times between 5:00 and 6:00 this morning, needing help to the bathroom. Dad tried to let me sleep through it, but I heard the conversation in which Michael said he needed Dad to rub alcohol foam on his hands for him ... because "my arms get too tired at night".

It is my guess that today is going to be a cheerful, wonderful, wonderful day.

Mike just got back from dropping labs and informed me that
The MIX 101.5 RADIOTHON at Duke Children's Health Center has been cancelled for now, as the radio station is quite busy with collections for Katrina related causes instead. That makes good sense to me.

Wednesday, September 7, 2005 12:16 AM EDT

Day Plus 55


Special greetings to Ms. Angie's class and to our Park Road community. We look forward to "seeing" you, even if only on video tape for now.

*Summary:
Michael Patrick is pretty tired today. He slept in, since we have the day off. We are mainly concerned about his liver, his kidneys, his blood pressure, and fighting off any bug he has aquired. We also want him to successfully eat more and more so he can get off of the TPN, as it is hard on the organs to process this IV food.


Tomorrow we will "draw and drop labs" before we go in for a check-up. This is something we have gotten used to doing by now, and here is what it means:
Blood is drawn from one of his central lines and put into little tubes. Each tube has a different chemical inside so different tests can be done. Dad drives the tubes over to the bone marrow office so it can be processed. The results give us Michael's "counts" for the day. That way we have some idea of how he is doing by the time we get to the clinic or day hospital.

We will be especially curious about a few things tomorrow. We want to know how certain medicines are working, and if any changes should be made.
His bilirubin total was 2.7 yesterday. That is up from 2.5 on Monday. We want it to be lower than 1.2, so we know his liver is getting better again. He doesn't like the medicine for this, and it makes him throw up sometimes.

Tonight we are decreasing the dose of his blood pressure medicine. If his blood pressure is normal when they check it, that would mean he can stay on the lower dose. That would be good.

The third number we want to know about is his White Blood Cell Count (WBC). We would like it to be over 5, and we think it will be since he got a dose of GCSF on Monday to make more white cells grow grow grow. The growth factor(we call it "G" for short) is what makes him so tired. It also makes his bones hurt because of all the quick growth. The bone marrow inside the bones is like "a cell factory", and all of the hard work it does is what causes the pain. The white blood cells are what our bodies use to fight germs or infections inside of us. It is possible that Michael has caught a virus of some sort. We will be watching him closely to understand how he is really doing, and what to do about it.
Please continue to pray for Bryce Anderson we want his liver to get well.
Thanks for holding Michael Patrick in good thoughts and prayers!

Monday, September 5, 2005

Hi everyone,
Michael is doing great. We had a good weekend, Aunt Meg and
Uncle Kevin came with Lauren and Ryan. Dave was here and the
Tamborino's stopped by for a while. It is nice to have company. Michael always has fun. We are going to the clinic Monday, Wensday and Fridays now and soon it may get cut to two days a week. Jean is a great nurse and the doctors and nurses at the clinic are just as good as the nurses on the 5th floor, we consider ourselves very lucky.
We continue to request prayers for Michael, Bryce and all the others who go through what we are going through. We pray for the family of my good friend John Wolf and we pray for the family of Queen Maddy.
Thanks
Mike & Jean

Saturday, September 3, 2005 2:28 PM CDT

Hi All!!!!

I am lucky enough to be here in Raleigh visiting Michael Patrick!!! He looks wonderful!! He is feeling great and we are hoping Mr. Dave will get him to eat some chicken later!

I am so happy to be able to post not with lab updates but that I am here with my family to spend the day with Michael, Mike, Jean and Dave.

Keep posting in the guestbook....

Take Care!

Meg

Friday, September 2, 2005 Day FIFTY

Is it just us, or is fifty half way to one hundred?
They say it is the first 100 days that are so important. We've learned, though that there is really no magic to that in as far as getting to be home or finished with treatments, etc. Just the same, fifty feels pretty good.

Michael didn't fight about his five oral meds today, but he didn't keep them down either. Maybe the trick will be to spread them out. Hmm, we'd be giving him medicine every two hours until bedtime. That might work though. We all know we have to do what we must, right?

We've lucked into a Dora marathon on Nick today. We'll be heading out to the clinic, shooting for a 2:00 class with Ms. Lexie.

I can't wait to see what Dave can get him to eat this week-end. I suspect his weight is down again. He refused EVERYTHING suggested yesterday.

Thank you for your continued prayers. You are in ours as well.

Thursday, September 1, 2005 11:19 AM EDT

Happy September.
It is Day Transplant Plus 49.
We have the day off, and Michael Patrick is snoozing. He was up several times this morning and it seems like he is going to have a good day. That is, when he is ready to do so.

The biggest news is still that the CMV DNA results were negative (Monday). We can't even explain how cool that is!

We are eliminating an other IV medicine too.
Now we have one medicine that is given on an IV pump twice a day, and hopefully he will get GOOD at taking his liquid ("PO"s) medicine without resisting, BEFORE that one swithces. One IV medicine ("G") given only when needed on the evenings they tells us he needs it. TPN is still required overnight, but that will change as he takes in nutrition on his own.

We appreciate you!
Mike & Jean

Wednesday, August 31, 2005 3:59 PM EDT

We had a two pixie-stix visit in clinic today. Michael had a lesson with Ms. Lexie while his vitamin K was infused. He also got GCSF because his WBC was down to 4.0, and we dose for anything below 5. His Hemoglobin is 8.9, and check out his platelets at 104!

The BEST NEWS is, without a doubt, the results of Monday's labs:

CMV DNA NOT DETECTED!

So, he has had his LAST DOSE of (the toxic IV) GANCICLOVIR! He can go back to taking the oral Acyclovir instead. No chemo precautions required! He just has to get better and better at taking the meds and food, and keeping it all down.
Today he had a bite of bacon. Plus the candy. I'm trying to get him to drink more. His weight was down to 15.1kg today. Can you say "milkshake"? Lactose free, that is.

Cytogam is changing to once a week now.

Wednesday, August 31, 2005 still Day Plus 48

Michael insisted we change his site to match AJ's site.
He could use the sunshine, though because he's been a little grouchy since I squirted two meds in his mouth. He even refused to chase them with a drink. It has only been an hour or so. He has come around a little bit, mostly because of the cheery photo of AJ in the Cheerios hat. Even now, this fellow patient is inspiring! Thanks AJ! You hang in there, and keep those tricycle wheels spinning!




Praying for Maddy's family.

Wednesday, August 31, 2005 Day Plus 48

Good morning.

Michael Patrick is sleeping through some of his infusions. He was up pretty late last night.
Yesterday, for the morning oral meds, I had to be quick as a flash and squirt the dose in, and watch until he swallowed it each time. He was fully angry at me, but I took it very well, keeping it to a minimum. Last night, he wasn't thrilled, but he was very cooperative. Enough so that one would never guess it was any problem. It will be interesting to see how he does today.

Tuesday he ate about a tablespoon of Trix yogurt, a toddler sized handful of Cocoa Pebbles, a small piece of bratwurst, some sweet tarts, and some grits. He only drank water which has no calories, and a sip or two of cranberry juice. He ate none of the things we purchased just for him, not even the lactose free ice cream.

Congratulations Baker family, on the safe arrival of Kevin Michael. You remain in our prayers.

There's the beeping pump.
Thanks!
Mike & Jean


PLEASE PRAY FOR MADDY!!

Tuesday, August 30, 2005 Day Plus 47

Today is good. wegkl'''''''''''llllll
We have the day off! No labs and no appointments. Grandma Jo is here and we might learn to samba. ha ha
Michael has really been enjoying music lately. He sort of reminds me of how he was at age two. Like a little kid rather than a patient. I savor the moment! (and offer it as prayer for Ofelia & Carmen)
Since he is still a patient, we have to be careful in many ways. He still can't have (raw) fresh fruit or veggies, or anything organic. He must avoid crowds, and at all costs avoid anyone sick or recently vaccinated.
*Uncle Joe was neutropenic at his last visit, and hopefully today they will find that his ANC is high again. That way he can skate when the rains dry up a bit more.*
Even with a high ANC, and technically not neutropenic, Michael Patrick still has a "baby" immune system. The list of precautions goes on and on. We pretty much go from Apartment to clinic and nowhere else. We've even been advised not to roam around on fifty-one. That is sad because we miss our medical family there. Our 5200 family is great too. We're alowed there, but I've had allergy symptoms since I moved out of there, so I don't dare venture in, excepting that trip to the BOPP for the bruise check. The bruise is much improved, by the way. His platelets were at 84 Monday.

We got word today that the cyclosporine level is finally withing the range we want. We still have no results of the CMV that is going to be negative. "I'm claiming it now".

My personal prayer intentions (that I'll share) today are:
for Michael * no infections, and improved eating
for Bryce, and Maddy, * daily improvements, and enough miracle to sustain the families each day.
for the Duke kids inpatient and outpatient,
for newly diagnosed families,
for those traveling soon, and
for everyone who enters Malvern or Lynbrook this week.
*May God give them exactly what He knows they each need to get through this difficult time, including some sunshine and smiles, and the awareness of His presence. These things, I pray in the name of The Father, and of The Son, and The Holy Spirit. Amen.

Monday, August 29, 2005 10:20 PM EDT

Medical News:
No changes were made today. Our visit went well. Michael looks and sounds and is acting like he feels great.
We need to wait and see if the positive CMV results were accurate or if the negative CMV results were accurate. Then we'll know which antiviral medication (along with the others) will be best for him.
Nurse Debbie said he could have instant breakfast (among other suggestions I know he dislikes), so he had some chocolate flavor in soymilk this afternoon. That is a big deal, and I am pleased.
Thank you to those of you praying Michael Patrick's eating improves. Seems like he has been eating once a week for the last several weeks. Not very successfully either.
Saturday he ate more than ever! (you know, in the last sixty days or so) Sunday he ate again without emesis. He had almost a quarter of an Eggo waffle and about three bites of a hot dog. (small, cut-in-quarters bites).
He managed to drink about 8 ounces of water Sunday.
He had only been drinking Sprite and water since discharge, with little exception (nothing else has stayed down).
TODAY, other than the high calorie soy, he didn't want anything before 7 in the evening. I held off on his TPN since we don't have to draw labs in the morning. He ate a slice and a half of carrot (commercially frozen, & well cooked). Grandma Jo cut the (2) slices into triangles for him because she knew he likes them that way. Then he was stuffed and the TPN got connected. He drank about an ounce and a half of (8th Continent) Soy milk, along with his oral meds. WHOO HOO!! NO FIGHT !!! Praise God for little things that mean a lot!
Shortly after, he asked for "chicken on a bone" which is what he has always called chicken legs. He ate all of the skin off of it. He chewed some bites of the meat but just couldn't follow through with eating them. He wanted an other but I was afraid to put so much fat into his stomach.
I brought out the box of Life cereal and Life is good. He ate about nine or ten of the squares. (remember he has always eaten cereal dry more often than with milk.) "Stuffed", he says, and then, "Tired". So off to his firetruck bed he goes. He's waiting for me to read to him. Yes, he had a nice nap today which is the only way he made it beyond seven thirty awake. ha ha
Goodnight God bless you

Sunday, August 28, 2005

Michael Patrick is doing well. He has had an active week-end, and it even included more than a few bites of food. He went to the clinic with Mr. Dave! He danced for Ms. Kim, and enjoyed a full week-end with Auntie and Jewel. His blood pressure has come down since starting the oral medication Saturday morning. Now Granma Jo is visiting! OO and he's dancing again! woo hoo
Labs will be done in the morning (as Monday is the regular day for full labs), and we are pretty certain that no CMV will be found in this DNA test. Surely Tuesday will bring this good news. This thought is based on Wednesday's test being negative. (Only last Monday's was positive) Yet we do not want to get ahead of ourselves here.

Thank you for your prayers, both for us and for those you read about here, including our links.
We pray now for the repose of the soul of John Wolf. We pray for the peace and comfort of his wife and small children. May God heal the grief felt by so many, especially them.

God bless you!
Mike & Jean

Saturday, August 27, 2005

Please pray for a miracle for John Wolf!
He is a lifelong friend in dire need of prayer right now!

Thursday, August 25, 2005 Day Plus 42

Our third "day off". (Well, not counting Sunday when we went over to the clinic only find we didn't need a visit. No problem! We just said, "see ya"!)
The first day of school both here (not that we noticed) and at HOME!

Many of you have been praying for Bryce. We wholeheartedly thank you for your continued prayers. Most of you have simply heard about him without more detail than a name. We have been praying for him since March. His father was, and continues to be, a great source of strength and encouragement for Mike (and therefore me). It was him who stood in the PICU and told Mike strongly, "You're going to get through this! And so is your son!" I've never forgotten that moment. In fact I reflect upon it often. Funny how a single moment can be so powerful! Today I am linking his web site below for you to visit.

Also, Frankiepants.com has links to some 5200 families. They remain in our prayers as well, and hopfully yours too.

Tomorrow is going to be a busy day. We have an appointment at 9:30 AM for a GFR test. That will take hmm let's see, two minutes, then an hour wait, then two minutes and two hours of waiting for an other two minutes. Okay so we never timed the two minute parts, but the wait between blood draws needs to be very accurate. It is worth it to see how Michael's kidney function has or (hopefully) hasn't changed.
School starts tomorrow for Michael. It is so cool, his teacher comes to his room. He liked it when she brought school to him on 5100. It was the limited Summer session while we were on 5200, so he hasn't had a class in a while.
It seems to be perfect timing, what with the waiting. He can wait in the Jim V Day Hospital (attatched to "clinic").
Sure has been a long time since we've seen cousins! We miss them. We don't even hear Thomas talk nonstop about them anymore.
Yeah, we have to admit that we have tested Doctor Meg on Thanksgiving *and* on Christmas to find she is indeed very reachable! We haven't tested Dr. Martin on holidays, and with any luck we'll be in Charlotte and Dr. Martin can eat uninterrupted.
Hey, speaking of doctors, we really appreciate that Dr. Burgos has been loyally following our case since day one! (okay, it was really night by the time we arrived) It is always such a comfort to see an original familiar face!
Dr. Hanna please know we miss you, and in case you forgot, you promised a certain little Jenna that you would get her a flamingo candy cane. I hope you have it next time she sees you.
Okay, this was suposed to be a short update. If we start thanking people the list would go on and on and on. Basic Rule of our Thanks goes like this: If you are reading this, you are on the list of folks we want to thank. We do have a challenge for you though. We need to "kick it up a notch" on the guestbook. Do you think we don't want to hear from you? Guess again! Mike's eyeballs are getting tired looking at the same ones over and over. So, how are you?

Wednesday, August 24, 2005 Day 41

Hi all,
Michael is doing well but yesterday at 4:30 pm the doctor
called to tell us that Michael who has previously tested
negative for CMV now has tested positive.
We have every confidience in the doctor's and nurses and
we are sure that they will control and correct this.
Some of Michael's medicine's have changed more test will
be done to monitor the progress.
CMV is common in most people and it lays dorment after someone is exposed to it, for life. The reason for concern is Michael's immune system is suppressed so this has to be controlled.
All is well in Charlotte also the kid's are well prepared for school. Jean and I apprecieate anyone who has been concerned about Michael.
I also want to say, and I know some doctor's, Dr. Martin is the most reachable Doctor I have ever seen or heard about in my life.(THANKS DR.MARTIN)
Bye,
Mike & Jean

Sunday, August 21, 2005 Plus 38

Hi everyone,
Michael is doing well. We all had a great weekend,yesterday
Dave and Virginia spent the day with Jean and Michael while Joey Jewel Thomas and I went to Louisburg NC and spent time with the Peoples family. Mr. Larry is chief engineer for the
Louisburg fire department and he took us on a tour of the fire department then he let Thomas pick which truck he wanted to ride in. Thomas picked the newest biggest ladder
truck and we drove around Louisburg with my kids and Joni
Larry's daugather and Michael's good friend. Then we had the
firemen extend the ladder on the truck and shoot five hundred gallons of water out the nozzle on the ladder. Then
we went to Larry's sisters resturant with Joni, Larry and
Miss Ann for some ice cream and then it was off to the private airport where Larry keeps his plane and you gussed it plane rides for Joey and Jewel. Thomas was happy to keep
his feet on the ground. Larry said it the nice way about me
we better wait for a colder day for me to fly cause of my weight.(ha ha) Dave and Gin left this morning with all of
our kids except Michael.
Thanks,
Mike & Jean

Friday, August 19, 2005 10:37 AM CDT

Day Plus 36!
You didn't really think we stopped counting, did you?
Things are going well!
We have the day off! Michael J. didn't even have to deliver labs today. That means Michael Patrick didn't get blood drawn! Bonus! Of course he still had to get his infusions, but they are complete until evening, with no clinic visit in between. Everything is twice a day with the exception of the Kytril being one 5 minute push, and the TPN running all night. Hopefully he will start eating more and more food with no stomach upsets. He has requested some foods that he changes his mind about eating when preparation is complete, or a few times before it began. He is really only interested in potato chips, so I say a lot of, "How 'bout [whatever I can think of] instead". This is a challenge we do not mind. One reason is that we want him off of TPN sooner rather than later! An other reason is that he has been taking his oral medications okay. There are only two right now (you guessed it, twice a day each). As he gets more comfortable taking them, more of the meds can swap from IV to PO (by mouth). The more food he eats, the easier it will be for him to agree to taking the meds.

Mike took Joey and Jewel out to play today. They've headed to Raleigh to use the leftover birthday tickets and tokens. Of course the little fellas have no clue that the big folks went to have such fun. Maybe we'll find something fun to do here. I'm no Mary Margaret so it won't be art! Maybe we'll dance to Baron VonRumblebuss! LaLaLa! Speaking of music, we wish all the best to Tyler and his family as they relocate! We'll be telling folks, "We knew him before he got famous - beyond the Triangle".

Since we've been here at "the apartment II", I've caught myself thinking Cynthia is just beyond the wall on my right. I heard Monday in the clinic that we had already missed the Frankiepants parade. I was only sad a nanosecond because I wouldn't have wanted to slow you down! Congratulations!!

I spend a lot of my late night time thinking of the people I didn't call or email yet again today and assuring myself that I will contact them tomorrow. Each day is busy! Today it is nice that I have time to update.
Much love and gratitude to each and every one of you.

Thursday, August 18, 2005 7:40 AM

Hi everyone,
Today is a good day. Michael is doing well, he get's checked
everyday and has no big problems at this point. We are trying to get Joey, Jewel and Thomas back on a school like
sleeping schedule.(good thing we have another week cause it seems like they need more time to get used to having to be up by seven.)We are very happy to see and hear of some of our neighbors also being discharged from 5200.We have people
on our list to pray for who we pray for everyday and we want to add baby Benjamin.
Thanks,
Mike & Jean

Monday, August 15, 2005

Hi everyone,
All is well. This is seven day's in a row where Michael has
energy. Nurse Jean is on duty so it's all good. We are setteled in the new apartment and bring lab work and drop it off everyday so when we go to the clinic they know how Michael is doing before Jean gets there.
I got to talk to Kate's mom today see the link to her site on this site. Kate is adorable. Jean and I ran into Hussain
today they were our neighbor's in the bone marrow unit his
daughter Jana lost her battle recently, our hearts go out to
them. We continue to pray for all children who have to fight
the bone marrow battle no matter the reason. We always pray for Michael and we never forget Bryce so thank you all who
help and encourage our family.
Thanks
Mike & Jean

Sunday, August 14, 2005 PM

Hi everyone,
We are at the end of day plus 31 and Michael is really showing
signs of a guy who is all in for the long haul. He is recalling events from last year and talking about things
other than what has been going on for the last five months.
We are becomeing more and more optimistic every day. We are also very much in touch the criticial fact that things change from minute to minute. Michael's IMMUNE SYSTEM is and
will be supressed until like March of 06. Michael is as predicted (*drs. prediction) doing much better out of the hospital.
On a much funnier note IT IS OUR UNDERSTANDING THAT DAVE HAS 2/3's OF THE GOLD FISH TRAINED TO DO TRICKS FOR FOOD
AT OUR HOUSE IN CHARLOTTE SO IN ADDITION TO ALL OF OUR
BLESSINGS WE LOOK FOWARD TO COMMING HOME IN A MONTH OR SO
TO THREE TRAINED GOLD FISH .
Thomas goes to Tracy, and Joey and Jewel go home to Aunt Paula next Saturday so anyone in the neighborhood who wants
to keep an eye out for my kids I will tell you up front THANKS
Mike & Jean

Friday, August 12, 2005 10:10 AM CDT

Day Plus Twenty-Nine!
-we're home at the apartment!
We spent most of Thursday evening organizing and getting medicines ready...and into Michael-I'm-an-outpatient-now-Patrick. As you can easily guess (and certainly underestimate) it is great to be together again! How nice it was to wake up this morning able to see each of my five most beloved sleeping. They were up shortly after me, as Larry the nurse was here around 8:30 AM.
We have decided to let all of Michael's infusions finish before heading over to the clinic. ("clinic", "CHC", "the building with George's Aquarium", "Health Center", they are all the same thing.) So we'll head over there soon.
It is all so very good!
God Bless!

Thursday, August 11, 2005 4 pm

The good news is............Michael Patrick has been released from Duke!!!!!!!!
The whole family is together and Michael is feeling much better than he has the last few weeks!!!

Michael will have clinic appointments regularly to check his status but for today he is at home!!

Wednesday, August 10, 2005 8 AM Eastern

Good Morning!

................Day Plus 27!.....................
Now I don't know about you, but I think twenty-seven is an indicator of good things. ha ha And good things are what this day will surely bring!

Good things from yesterday:
** Michael's numbers make him look better, and improving on paper. He said he feels much better!
** Our neighbor Kate was happily discharged to outpatient status. Seems strange waking up without hearing her talking! I miss her and her mother without a bit of sadness because it is just so good that they have entered the next phase. I was even happy to see the empty room as we passed it several times in the late night hours (doing laps). We wish the family all the best and look forward to being clinic neighbors this week. Kate's web site is linked below.
** Trey, the music therapyst, came to the Connection (aka playroom) to play guitar and sing. AJ and MP used their hands for instruments. Joseph joined us and had a great idea for the car song. AJ said Joseph's Lamborghini should be green. The grown-ups were not so great as Elvis style back-up singers, but everyone had fun.
** The 3 boys stayed in the Connection for a few hours. It is good for their lungs to be UP and about!! Way to Go, Guys!!
** We received our 25th footprint bead for Michael's shoestring. I say "we" since I mean that it has taken each family member to coax MP into walking, riding, and being pushed and pulled for laps. The steps to Recovery program is pretty cool. The four+ days in bed were not good for him at all. That is why it is so good that the guys were out so much.

** Doctor D said we were shooting for Thursday! (for discharge).

So this morning at about 7:15 or so, Ms. Frances woke us up for a chest X-Ray. Michael didn't want one, but I knew it was needed so we can get the all clear for tomorrow. Thursday is tomorrow. What a cool thought. Now, I know that there is a chance we will not hit our target, and I need to stay calm if we cannot go. (It is really an emotionally CHALLENGING thing to live on Fifty-Two!! I have spared you all of the detail. I need you prayer warriors to remain positive!! No words or guided tours really prepare one for the hour to hour residing here, and I could never explain it enough either.) I will make sure Michael is fine either way. ...even if it means I have to leave the unit.
Today Michael feels great. Yes, he says "fine", but he shows me he is great. We are looking forward to a wonderful Day +27!
PEACE!

Monday, August 8, 2005

Hi everyone,
Today looks like it is going to be a good day. Michael's
blood work is leveling off and things seem alittle better
than the last few days. It seems to the eye that the liver which was enlarged is shrinking. Michael is still not even
close to being out of the woods but his progress is encorageing. Jean and the children are doing good and getting ready for the start of a new school year.
Michael has been in the halls of the 5200 unit walking and
riding on tricycles when he is up to it. We take each day as it comes and make the best of the good and try to weather the not so good. The nurses on this floor give him
plenty of attention and we really appreciate it.
Jean and I truely feel all the prayers offered for Michael
so thanks. Michael needs every single bad cell to be killed
so Thomas's blood factory can opperate correctly.
Their are so many wonderful very sick children here and we
know we are not unique,so please when praying for Michael
don't forget the others. We are still praying hard for Bryce.
Thanks,
Mike & Jean

Saturday, August 6, 2005 12:00 EST

Hello friends!!!

This is Aunt Meg with an update.....Michael is certainly holding his own during this tenuous time.....

The BEST news is: a special blood test was done which showed that more than 98f Michael's blood is actually from Thomas' donor cells........the bone marrow is working!!!!!!!!

Michael has had a few tests this week, a CT scan of his head (which was fine), his chest- which showed atelectasis- parts of his lungs- the tiny branches were collapsing on themselves....probably from inactivity...hopefully some exercise and deep breathes will help resolve this.....

He also underwent ultrasounds of most of his abdominal organs- his liver and spleen were enlarged with some fluid around them and his gallbladder had some"sludge"...most of which is probably a reaction to medicines and the fact that his little body has to work fairly hard to get better and those organs are working!! His blood tests showed his enzymes and function are ok.....

Everyday Mike and Jean tell me he is a little stronger.. a little more alert...still nauseous but still fiesty!!!!

Today is a busy day because Mr. Dave, Ms. Virginia, Ms. Karen and others are visiting.....I am hoping Michael will be in good spirits and active!!! He loves visitors.....especially that group :)

The doctors assure me he is doing well- I keep telling Mike and Jean to just look at Michael- he is the proof that things are ok- and just take one day, one step at a time...

The word is possible discharge on Monday...possibly yes, possibly no...we will take it one day at a time!

I'll keep you posted!!

-Meg-

Saturday, August 6, 2005 10:35 am Eeastern

IT TOOK!! Praise God!!


Day Plus 23!

Dr. Martin called last night with the DNA test results. Michael’s body has “Greater than 98onor Cells”!!!! . He said that they never ever say 100fficially. Michael has been working hard at growing cells, and now we have proof positive that it has been the right ones! We are very excited at this news.
After a long day of uncertainty and sadness, it was truly a wonderful ray of hope.
The ultrasound showed some concerns that will be followed very closely. He needs to take an oral medicine now that he doesn’t like.
Dr. Martin is more optimistic than we are, if you can believe it. That is so good!
PEACE!

Friday, August 5, 2005 3:23 PM CDT

Day plus 22

Slowly but certainly making progress. We've reached the agreement that getting out of the hospital might be the best treatment for the nopshusness (nausea).

Our challenge has been to get the little prince to get up and get moving. I carried him a lap while Daddy pushed the pole today and then Dad made him walked a lap. That is a lot (and therefore very good) because since that great run he had on Saturday he has been very inactive. Not good for bodies under normal situations, but really bad for him here. Now it is the week-end again and we are expecting company. I think it does all of us some good to have these visits.

We are awaiting information gained from an ultrasound today. The liver was the main thing checked, but it was all very interesting to see.

Thursday, August 4, 2005 6:50 PM CDT

First of all: Stacy, sorry you got left out! Your visit, an unexpected extra nursing, is very much appreciated. MommaWren is doing much better. Thanks to both of you!

Day Plus 21
Michael's Golden Birthday has been a really good day. He was sitting up and playing with PlayDoh early in the day; making animals. He enjoyed extra smiles and visits and presents and so many cards. You folks are great. Many many thanks!
I know that people usually think that one cannot see prayers, but I sort of think prayers are very visible here. So, we are sending out more gratitude than we can express. Thank you for your continued prayers.

The doctors are pleased with the way Michael Patrick is responding to the medicines. His lungs and liver are getting better. IF -and this IF can be put in writing- If things continue to improve, we are going to be going home (to the apartment) on Monday. Stay tuned. God bless!

Wednesday, August 3, 2005 11:38 PM CDT

Hi everyone,
Fourty minutes into Michael's Birthday and all is well. Today was a better day for Mike, he had more energy than
he has had for the last few days. Jean was not feeling so well this morning but is doing better now. Michael has some
fluid on his lungs but the doctors feel they can control
it, and have him on antibiotics. The doctor's had to draw labs
for one test that has to do with coagulation the old fashion way, with a needle. The blood drawn through his central line was giveing them a very high reading the last few times. The lab work just came back and it is still high
but only by a very little so they are not concerned. We hoped to be discharged today but we are now looking at early
next week. Michael is still doing great and we are very proud of him. He had a visit from one of his former nurses
from the 5100 unit, Daisy. Daisy is going to work in a peds
icu at another hospital. Also Dr.Burgos came by to check in.
Joni Peoples called a few times and Michael was playing Mr. shy guy. Michael does that to me sometimes too, but I wished
he talked to Joni she has been a great friend to him and us.
Bye for now,
Mike & Jean

Tuesday, August 2, 2005 7:11 PM CDT

Happy Birthday Chris!!

It is still day plus 19. A lot has happened since the last update. We are still on the launch pad, but our engines are not revving so loudly. I am not sure when our actual discharge will be, but I am glad that it will not be before Michael is really ready.

He had a chest x-ray (you know they bring those machines right into these patient rooms). He hadn't had one since his pre-admit work-up. Quick results showed that he had something on the lungs. Dr. Prasad ordered a CT scan of his chest to see exactly what it was. Michael was so sleepy and uninterested in speaking with us at the time the CT was ordered that it was decided to do a scan of his head also. That one looks good, thank God, and he seemed himself right after the tests, enjoying the wheelchair ride back to his room & then sitting up, talking and playing with his Blue Power Ranger - Battlized!
From the chest scan, Dr. Prasad knows that he has a bacterial or fungal infection on both sides, and one of the lungs has some fluid build up in it. Not to worry! We (meaning he) caught it very early, and aggressive treatment is being started tonight. A full battery of bloodwork will be run tomorrow. We want to be certain we know what we are dealing with before we think about going to the apartment again. Chances are good that it won't be long now, but you didn't hear it from me!

Special thanks to "e" and Margaret for calling me at the very moment I needed it!

Tuesday, August 2, 2005 11:27 AM EDT

DAY plus 19

We are on the launch pad...ready to be discharged tomorrow.
Michael is "sleepy". He is still battling the nauseousness and finding very little relief from any of the three meds he gets for it. Each of them makes him somewhat sleepy. Not as much as they used to, but still, he is sleeping a LOT! Dr. Prasad wants to see him up and out in the halls. I suspect we need an other off unit pass to see him tap into his energy source. Nothing motivates like wide open spaces. Saturday, he certainly did jump right back into the SpideySpeed mode. It will be nice to see it again (soon!). Joey is working on it now...
TPN is being tapered down so he will be on it only 12 hours as outpatient. He will be on the heparin pump 24/7 for a while.
They decreased the GCSF (growth factor) from twice a day to once because he is making white cells so well. (20.3 today) Platelets and red blood cells come later, so transfusions will continue as needed.
His organs are being monitored daily for any signs of ill effect.
All in all, "It's All Good!" Praise God!

Monday, August 1, 2005 4:59 AM CDT

Happy August!

Day plus 18

Michael's white blood cell count is 16.6, he was given platelets, and he is getting red blood cells now. This is very common, and Mike assures me (each time) that it is good.
The urine has been testing negative for blood since that one positive result. I think they'll still do the viral testing later.
No news is good news.
Praying for Bryce,...and "Baby Franx' baby sib".

Best Wishes to Ashley as she enters into the post-transplant world.

Sunday, July 31, 2005 12:05 AM CDT

Day plus 17

Michael's white blood cell count is 14.6. His platelets were down to only 14 (at the 2 a.m. lab draw), so he got some early today(they were actually dripping in when I did the last update).
First thing upon waking, he complained of tummy pain. I guessed that it was full bladder pressure since he had lasix without output (of urine) overnight. When the urine was "dipped" (with a test strip), it was positive for blood. Perhaps he has a bladder, or urinary tract infection. A sterile sample has been sent to the lab for cultures. The test with the quick results cannot be done today, so it will be done tomorrow. Meanwhile the culture is started so we aren't losing any time. Very simply phrased, Cultures are when blood, or in this case urine, is put into a bottle (ask a lab tech what is in there! ha ha) and allowed to sit for 24 hours to see if anything grows. The bottle is checked again at 48 hours and so forth. So when I heard they were going to do a urine culture, I thought it would interfere with our plans to get out of here. Not to worry. Dr. Driscoll says it would not keep him in the hospital. phew

Back to platelets: since he was given some earlier, the level needed checked. I drew the blood for that test. I needed to practice since I'll be drawing blood daily, and dropping tubes off at the lab so his counts (and whatever they need to know) can be determined in time for our visit to the clinic. It doesn't hurt him! We just use his central line. No needles!
Doctor changed the magic number for platelets from 20 to 30, so now, if they drop below 30 , he will automatically receive more.
Michael feels well. Ask & he'll say "FINE". His ANC is 11,972. Wow! How'd'ya like THAT!?

God is good!! We're praying for Bryce and other fiftytwo familes, and of course, Uncle Joe!

Sunday, July 31, 2005 4:56 AM EDT

Day plus 17

White Blood Cell Count: 14.6
It is going to be a great day! (Later, that is!)
For the record, yesterday, WBC was 9.7, and we took Michael off the unit for an hour! (History)

Saturday, July 30, 2005 7:30 Eastern

Day plus 16

What a treat! Our first trial flight! Michael was granted permission to be unhooked AND off unit for almost an hour!
So, off we go. Dad and Mom, Dave and Tim, Thomas and Jewel, The Birthday Joey, and the man-child of the hour, all cheerfully strolling through the anti-room, down the hall and through the purple doors! We couldn't resist going for a spin through Fifty-One! It was great to see familiar smiling faces! Michael wanted to run, but with shoe covers on he doesn't get much traction, so he just walked really fast. His legs know the triangle of 51 very well. He has had much experience running and walking (and riding the IV pole) there. We didn't even go slow enough for hugs or to find out if professional nurses had cookies on hand. He was halted just long enough to slap five on a cool nurse (he's one of our very favorites).
As we left 51, we looked in "the door" and tried to get Andrea's attention inside 52. I thought that would be pretty neat, but she was busy with nursing duties.

Michael had fun leading us, with Thomas as coleader, all the way to the bridge and beyond to the Children's Health Center. We went to the feather floor. Michael said later that now that is what we will call it. We'll see if it sticks. He and I have assigned a nickname to each and almost every part of the place already, so chances are that he will remember. We didn't pay much attention to the fish though. There were songs to play and a PowerRanger disc to throw. As you may guess, he was quite TIRED after 40 minutes off unit. We said goodbye to our loved ones there under the feathers, and I carried him back Home on 52.

He's all hooked up to the IV pole again, and even though he already said "goodnight" to me, he is playing a game. Yep. Monkey catchin' kind of game. (Ape Escape 2 on PS2)
I guess I'm rambling on here, but I am happy about this news. Wait til you see photos! Of course you can't possibly see all of them or Dave'd be changing them constantly. Awe, Michael is almost asleep. "I'm tired", he says.
Goodnight, God bless you!

PS
The anti-room is where we put on shoe covers and wash our hands -well, for 15 seconds- before entering the (5200) unit. People put on shoe covers (or unit only shoes) before they enter the unit to minimize dirt, dust, and germs, etc brought in, but Michael put shoe covers over his unit only shoes to keep them clean while off unit.
The antiroom is also the only exit used.

Saturday, July 30, 2005 10:18 AM CDT

day plus sixteen


H A P P Y B I R T H D A Y J O E Y ! ! ! ! !


Michael Patrick's WBC=9.7, and we're on track for celebrating his golden birthday at the apartment.

We're praying for our "52family" each day.

Friday, July 29, 2005 3:50 PM EDT

Day plus 15
The amazing Michael Patrick is having a good day.
He likes the streamers in his room, though he is quick to tell visitors in his hoarse voice that, "it's not Joey's birthday today beecuz it is Really tomorrow".
Immediately after refusing cake, he requested a slammer (that is a mini hamburger) from Hardee's. He has taken two bites!! He says he is going to take more bites "soon", but the truth is that he cannot eat it once it is no longer warm. If I didn't know he took two bites, I would think none were taken. Going through the motions of eating is a good start. The TPN is feeding him sufficiently.
The TPN --the liquid food he gets through his central line (IV)-- is going to be weaned down from 24 hours to 18 hours either today or tomorrow. The goal is to slowly get it to only 12-14 hours a day before we go home.
I've been told that he will be on a 24 hour Heparin pump at home because that drug will no longer be put into his TPN. I'll wait to see about the vitamins and zantac because I know those are simple PO (by mouth).
His PCA (morphine on demand) has been cut back to .3 mg/hr and will go to .2 tomorrow and so forth, so he should be off before we go.
Most other meds will be appropriately eliminated, or weaned to smaller doses for home use.

Docotrs and staff are speaking of us getting released from Fifty-Two soon. We think he will be home to turn four(our Durham home: the apartment). Won't that be great! Of course this is if things continue to go so well. He may even get a "pass" to go out for an hour on Sunday. I guess we'll stay closeby. The doses of meds get smaller, and the length of time on the passes get longer.

Sounds "all good" to me!
;0)

Thursday, July 28, 2005 7:28 PM EDT

Day plus 14

Michael got up early. He had watched Peter Pan twice before 9 o'clock.
We got to be part of a confetti parade! Michael liked playing with the tiny paper bits. He learned a new word, then we threw it cheerfully as Jessica wheeled by in her stroller. It was moving to see a happy discharge. Everybody clapped and cheered. It was also good to see Kate, Ashley, AJ, and Jana out there, smiling under their masks. I missed some other faces! The kitchen wasn't the same yesterday or today without my lady friends. Funny how quickly some people touch our hearts.

Today Michael admitted to having back pain (growing cells causes pain in the bones) and his nurse came up with a great idea to get him to take the liquid Tylenol by mouth. He even got to squirt her with water. Fun.

Although it is day plus fourteen, we have been inpatient for over three weeks already, and it is about time we think of taking a break, don't you think? We're just over our average # of days. Soon, very soon, we will experience yet an other new "normal".

We are just about half way to the test that tells if Michael Patrick is growing Thomas Edward's cells. I think he is!
Our (big) prayer continues to be that he have no fevers, infections, or other complications. (the possibilities are vast, and you either already know them, or would be frightened by them, so we just pray in general with full coverage)

Oh, more big news ;)
He had his first "solid" food today! A LOLLIPOP ! ha ha ha
Though he didn't quite finish it, he enjoyed it And kept it down. Woohoo! We'll take each baby step with gratitude!

He has been sleeping since 3 or 3:30 this afternoon.
Sleeping while his body works so hard.
GROW CELLS GROW!

Wednesday, July 27, 2005

Hi everyone,
The last few days have been good,Michaels counts continue to go up and he has been more active.He is far from out of the woods but alot of the worse days may be behind us.
Michael is talking more than he has in a few weeks and the
doctors are weaning him off some medicines. Before to long
he will have a test and they will know how many of his blood cells are his and how many are Thomas's. Jean and the kids are doing good. We have Joey's Birthday is on saturday
and then Michael's is the fourth so hopefully we can make those days fun. Cheryl Drohan's Grandfather is having heart
surgery on the 28th so please say a prayer.
Thanks, Mike & Jean

Wednesday, July 27, 2005 7:08 AM CDT

WBC= 3.7
ANC= 2627

Tuesday, July 26, 2005 8:26 PM EDT

Day Plus Twelve!

Michael had a good day today.
He has decided several days ago that he does not want me to put him on the scale. Hey, I can relate! Just the same I have been stepping on it with and without him each day. He weighs 14.6 kg.
Dad and Joey stayed with him all day long. They had fun in between naps.
He is nauseous often throughout each day, but that is not only expected, but expected to continue.
His white blood cell count is 2.7, and his ANC is 1944.

GROW CELLS GROW ! ! ! ! !

Monday, July 25, 2005 7:10 AM Eastern Daylight Time

LOOK at him up there! He says he doesn't remember that day.

*Day Plus Eleven!

Michael Patrick's White Blood Cell Count is
(drumroll please)

1.7

His ANC is a whopping 660!

Woohoo!

Because it is AML that he's been battling, we're used to the low counts, the waiting for the recovery of counts, etc., so we know that blood counts can vary from day to day and this certainly does not mean he will be packing for Charlotte. It is a wonderful thing, and okay to be excited about,as long as it is kept in perspective. It is still day eleven. Just an encouraging day 11! (I needed something great to offer as prayer for recent and current Fifty-Two Families!) The drug he is due to get today has the side effect of, guess what, Low counts. We'll see how it goes and be Thankful indeed.

*This replaces previous day 11 nonsense.

Monday, July 25, 2005 12:44 AM

Day Plus 11

Day eleven really started before I was finished with day ten. ... Time continues with or without permission. ... No place else is that more evident, to me anyway, at least not since July 2002, as I watched the sun rise over Lake Norman when it just plain shouldn't have. Most of you know that story and even if not, it is a different one. Back to today, as it changes to, uh well, Today!
So I was getting ready to pull down the Murphy bed just any minute. Funny when procrastination and insomnia join forces. "Still no cow pants".
So our nurse is in here and she asks about our kids so I point out some photos (we do make ourselves at home here). Then it hits me! I say to her, "I can't believe I just shut the computer down without checking for new pictures!" I explained how Godfather Dave was here and does all of our pictures... blah blah blah tracy blah blah blah...
I think it is good that the nurse was gone by the time I got the site back up. LOOK AT OUR BOY!! How emotional I got! I love that shot. Now I know some of you will really miss the other one, but let's just enjoy this one a while, okay?
If you want a nice update (I do know this one is jumbled, etc.), go read Dave's entry in the guestbook.

Meanwhile, Michael Patrick is resting up for a lap tomo...oops later today! I think he can do it! We have people (no "s" on that; boo hoo) to see out in the HALL!
He had lots of family here recently and we are so thankful for the visits as well as for "the behind the scenes", as Deborah says.
God Bless Y'ALL!!

Much Love
Good Day
Good Night
see, It's All GOOD!

Sunday, July 24, 2005 11:52 AM CDT

Day Plus TEN!

Today is a good day.
Michael had a bath in the tub (rather than the bucket & washcloth kind) and he did not really love it. Yet, he feels better for having endured it. I think he feels a bit better today than yesterday. He looks better.
Have you seen the new "Hatty"? Stay on your toes folks because Mister Dave took new pictures yesterday. I forgot to request a return of the Glamour Shot. I do miss the curls. Michael doesn't mind them gone at all.

Special greetings to those of you who are joining us from Frankiepants.com.

We're praying for Benjy, and as always, for Bryce.

weight today is 14.8 kg
wbc = 0.4

Saturday, July 23, 2005 6:41 PM CDT

Day positive nine
Michael says, "I just don't feel so good", when asked why he has no interest in playing a game.
He did perk up some to visit a bit. MrS Virginia even got him to allow her to use a "toothette" sponge to clean his teeth. He had mouthwash for the first time in a while. (maybe 40 hours or so) He should be doing the mouth care four times each day, but the mucositis makes it simply unbearable. Michael does every bit of his treatment SO well without complaint that it seems only fair to let a couple things wait when possible. We think that his mouth sores will be feeling better in a couple of days. Ironically that would be at day eleven: when he gets his next dose of methotrexate, but it should be a much lower dose this time.

There is a rumor that he is going to get new cells for his golden birthday.

In the mail today, he got a card from his singing friend Tyler along with a photo of Kelsey and Tyler with Michael Patrick . If you have not checked out the link below, go ahead and click. You'll see some pretty impressive stuff, including the photo he sent.

Grandma Jo and Aunt Mo are on the way up.
Much Love!

Friday, July 22, 2005

Hi everyone,
Today is day 8 and it is going well. Michael is on seventeen medicines and is sick and tired but he is
being a great patient. The doctor's think he is right
where he should be at this phase of this treatment. The staff on the 5200 unit are doing a great job. All the children are doing well living in the apartment and Jean
and I are doing well also. Grand Ma Jo is here with her sister so she is making a great recovery from her recent
heart surgery. Thanks for all the messages in the guestbook
and all of your best wishes.
Thanks,
Mike & Jean

Tuesday, July 19, 2005 4:16 PM CDT

Day plus five

Michael Patrick seems to be tolerating everything pretty well. He doesn't love it, but I think he understands it is how it is for now. He just told me that he didn't want to go to sleep, but that he is going to anyway. He got a dose of BenFen so of course he will rest. The BenFen is so he isn't so naup-shus. Hey if I'm going to mis spell it I may as well spell it the way he says it these days. Nox-shus is now nop-shus. He has been so around the clock.

He is on so many medications. Antibiotics, antifungals, anti GVH, and IVIG. I think you saw picture of the "high tech pole". There are still four pumps on it though changes were made. No big deal. His latest addition is the "PCA", which allows him to push the button to get his pain med.

Thomas is wonderful, and we can hardly tell he had a procedure at all. He is even doing some stairs on his own! His classmates and school friends are wonderful support to us all.

The people here are great. The more we look the more Blessings we see.

Thank God for Duke. Thank God for each of You!

Saturday, July 16, 2005 8:06 PM CDT

hi it is
MICHAEL and Mom

x I am feeling "fine". He isn't really but that is his answer, and he's stickin' to it!
He thinks he is great now for typing his name & fine (twice)

He has been battling symptoms of emesis and watery stools, but he doesn't want to tell you that. He has an idea:

Michael loves you!!!!!!!!!!!!!!!

Thomas is recovering so well. He is probably checking out the night sky right now. WE each have cool night vision spywear goggles/binoculars.

God Bless You


SUNDAY "DAY plus3" 4:47PM Eastern
Hello.
I didn't want to bump Michael's typing, so I'll just add that he has been having an okay day in spite of his lack of energy. He has been playing with "Star" and "Nossi" in between trips to the bathroom.
Love and Gratitude,
jean

Thursday, July 14, 2005 10:30 am

HI ALL!!!!

Just spoke to Mike... Thomas had his surgery and Dr. Martin was able to extract the bone marrow he needed...Thomas is in recovery and a little groggy but doing well...Jean is with him....The doctors will prepare the bone marrow and Michael will receive the transfusion/transplant at around 12 pm.

When Thomas has recovered from his anesthesia he will be wheeled to Michael's room, so they can be together......

-Meg

12:45 pm UPDATE

Michael and Thomas are together.....Thomas is doing GREAT!!! MIchael is getting pre-medicated...Tylenol, Benadry, etc so he doesn't feel uncomfortable during the transfusion and the doctors are letting him hold the bag of bone marrow before it gets dripped in...how cool!!! He gets to hold in his hands the cells that will save his life!!!!! Absolutely incredible!!!!! The transfusion should begin at around 1 pm....
-Meg

Tuesday, July 12, 2005 9:32 am

Hi guys!!

This is Meg.....Dr. Martin , the transplant doctor, e-mailed me the other day... I apologize that it has taken an extra day to post... Dr. Martin said that Michael is doing very well and his blood values are where they are expected to be at this point pre-transplant. Michael has tolerated the very strong chemo fairly well despite some nausea and is recieveing medicine called Zofran to diminish those symptoms.

Dr. Martin will update me weekly and I will post any changes. I will update the page as often as I can during the critical time surrounding Michael's transplant. Please remember to keep Michael, Thomas, Mike, Jean, Joey and Jewel in your thoughts and prayers on Thursday and the next few weeks!!! Thursday is the big day.....

Thanks for your support!!!

Saturday, July 9, 2005

Hi everyone, this is Jewel
Michael is doing well, with only a few more days left until the transplant. Thomas is staying healthy, and getting ready to share his bone marrow with Michael. Today was a good day, cousin Norine, Lizzie, Mr. Dave, and Mrs. Virginia visited us on the bone marrow unit. Michael got some new Fantastic 4 toys from Mr. Dave and Mrs. Virginia.
Michael walked 3 laps today and is on his way to earning a footprint for his shoestring. Amber from childlife is really cool, she does art stuff with us, and gets us stuff for the playstation 2 in Michael's room. Lindsay took pictures of Joey, Thomas, Michael, and me to make ID badges for us.

Aunt Meg is going to talk to Dr. Martin this week and will be updating soon.
Thank you for keeping us in your thoughts and prayers
-jewel

Wednesday, July 6, 2005

Hi,
Michael is doing well today. The not so nice Michael made an
appearance last night when the nurse tried to put three leads on him in his sleep. He carried on for about fifteen minutes. Michael was seen by an Speech therapist and she told Jean that she has never had a person score so high. Thomas is getting ready to be a life saving big brother. He is doing very well. Joey and Jewel are going over and above, so all and all we are in the best spirit we
can be in under these conditions. Some good people are going to come on the day of transplant 7-14-05, so we are not alone. Thanks. Grandma Jo sounds very good on the phone so we pray for a speedy recovery,and we appreciate your prayers for us and everyone else in our position.
Bye,
Mike & Jean

Monday, July 4, 2005 11:56 AM

Hi all,
Happy 4th,all is well. Michael is doing fine. JoAnn is recovering, she had a rough night but she is going to walk around today. Michael's room is ready on the bone marrow unit
# 5207,we will check in directly to the 5200 unit late tomorrow morning or early afternoon. Many labs will be drawn and we will get acclimated to our new surroundings.
Tonight we are going to go to Raleigh and watch fireworks
with John Oleary and his family. They are friends of my brother Chris.
Dave posted new pictures that are really good but we can't
get them on our computer for some reason I hope all of you get to see them.
Bone Marrow Transplant Day Is July 14TH Please Think Of
Michael And Thomas We Need Your Support And Prayers.
Thanks,
Mike & Jean

Sunday, July 3, 2005 7:41 PM EDT

I'm busy being being back "home at the apartment".
My Mom is doing very well recovering from SIX bypasses. She thanks you all for keeping her in your thoughts and prayers. I've turned her cell phone over to her again.

Crystal, phone in when you get back.

Zac, Your card went to Durham and back to Charlotte and back again here. Thanks!

Love and Prayers to each of you!

Thursday, June 30, 2005

Hi everyone,
Michael is doing very good.The children are getting lots of time together while Michael is an outpatient.Things are not
so good for Jean though,her Mom went for a routine Dr. visit
and they kept her.Grandma is having five bypasses today, 6-30-05 at two pm.Grandma is a ballroom dancer and has always
watched what she put in her body, so she is very strong and we
expect that she will do well.We would appreciate it if you could keep her in your thoughts and prayers.We have all been praying for our friend Bryce and I would like to report
that he was transfered to the rehab at John Hopkins yesterday, one big
step in his recovery.Thanks for all your support through these stressful days we really appreciate you.
Mike

Tuesday, June 28, 2005 12:50 pm

Hi Guys!

I just wanted to let you know that Michael had his new line put in this morning. He is out of the hospital and doing fine. He will enjoy a little more time at home with the family before he begins the process of his bone marrow transplant next week!!!

Thanks for keeping him in your thoughts and prayers!!

Meg

Friday, June 24, 2005

Hi all,
Today is going well.Michael and Thomas were seen at the clinic for pre-surgery visits and all seems good.Jean & I spoke with a physician's assistant and signed consents for Michael's new additional central line,(6/28/05) and for the
harvest surgery on Thomas,(7/14/05).As of this moment we are on schedule,Michael's transplant should be on 7/14/05.
We have no appointments this weekend so we will really be together as a family for two whole day's in a row.
Michael had blood work today as well and his ANC is 1564.
Jean and I,had no internet when we came to the apartment so
we need to report, on Tuesday we met with Jayne Cash and Dr.
Paul Martin from the bone marrow unit and they answered some
of our questions and explained what they felt about Michael's situation.Considering the circumstances their view
on his prognosis was very positive.We have met with child life staff and they really do good things for the children
as far as keeping them happy.
Have a great day,
Mike & Jean

Monday, June 20, 2005 8:00 pm

HI FRIENDS!!!

This is Meg, Mike and Jean asked me to update the page....to share some good news....MICHAEL WAS DISCHARGED TODAY!!!! Happily, the whole family is together!!! They are living under one roof, in an apartment close to the hospital. Jean is very happy and feels they have settled in to their "new home" fairly comfortably...at least for about 90 days!!! After that, Michael will hopefully be well enough to travel back to Charlotte!!!

Today also began Thomas' journey to help Michael in a way that no one else can! He was a patient in the clinic where his blood was drawn and he had a check up!!! Hopefully, the tests can go according to schedule and the bone marrow transplant can happen around July 14th. Mike and Jean tell me that Thomas was a VERY BRAVE boy!!! We are all so proud of him!!

In the meantime, I think Mike, Jean, and the kids will try to squeeze in some summer fun....and maybe some 4th of July fireworks!!!! (As much as they can- Michael's ANC was 180 on discharge...low but rising..but still "supressed")

I will try to keep you posted when Mike and Jean can not. They don't have direct internet access in the apartment so together we will figure it out..

Enjoy summer!!

Sunday, June 19, 2005 9:55 AM EDT

********* Michael has an ANC !! *************** It is 80!
Funny how a white blood cell count of 4.0 seems so big! (2 segs! woohoo!) His platelet count is 574! (thousand)

Chances are pretty good that we are still "on schedule". Keep in mind that it was always a "tentative schedule" .
He had a fever yesterday and started antibiotics. That is far more common than not, so no one is overly concerned. He looks good and feels well today. The owie on his knee is healing more each day, and we can take that as a sign that white blood cell are busy busy, doing what they should to fight infection!

Happy Father's Day!

Tomorrow is a pretty big day for Thomas. He will have his first visit AS A PATIENT to the Duke Children's Health Center. (That is not far away; it is above George's Aquarium; we are familiar with it.) He has his own medical record number, and already knows it by heart. Tomorrow it will become active. See, the previous visits to give blood were an extention of patient Michael, but now the interest shifts to Thomas himself. He will be measured and weighed, and his blood pressure and temperature (called "vitals") will be taken. He will have lots of blood drawn for the many tests donors need to have. Nothing out of the routine, just checking his total health, for his safety, and Michael's.
There will be more appointments for both boys through the rest of June.
Michael's surgery is scheduled for the 28th.

"If we are able to stick with the proposed plan, the bone marrow harvest/transplant will take place on Thursday July 14th."

Thank you for your prayers!!

Thursday, June 16, 2005 3:20 PM EDT

The turtles are back due to popular demand.

Michael's white blood cell count is 0.9 today. A differential was ordered with hopes of a rising ANC...
It is still zero for now.

All four of the children are in the playroom together. Michelle is so good at allowing them to play!! They were having much fun when we peeked in on them.
It is all GOOD!

Thursday, June 16, 2005 3:20 PM EDT

The turtles are back due to popular demand.

Michael's white blood cell count is 0.9 today. A differential was ordered with hopes of a rising ANC...
It is still zero for now.

All four of the children are in the playroom together. Michelle is so good at allowing them to play!! They were having much fun when I peeked in on them.
It is all GOOD!

Tuesday, June 14, 2005 3:13 PM CDT

Hi everyone,
Today is going well,Michael's white cell count is .6 and it has been for the last two days.Michael's counts should begin to rise soon,Dr. Burgos seems to think that his bone marrow work up will be pushed back a week or two.
Dr. Linardic said Michael is looking good. Tomarrow Joey and Jewel are going to participate in the super sib program
which will be fun and edcational as well.
Thomas is doing good and is having fun with his brothers and sister. I know we have not been updating the pictures as much, but one way or the other it won't be long and we will go back to how we started and change them at least once a week or so. Yesterday was a good day,the Drohans stoped by on the way to their new house in PA.We have to say thanks to them for all they did for Thomas.
Bye for now,
Mike and Jean

Sunday, June 12, 2005 9:48 AM CDT

Hi everyone,
Today is a good day. Last night Jewel stayed overnight with
Jean and Michael at the hospital. Michael's counts have droped but he is doing well.We think he is on track to leave
the 5100 unit and be out patient around the 18th or 19th,
Thomas and Michael will have many appointments leading to july 5th when Michael will be admitted. If everything stays on track the transplant day will be july 14th. Thomas will
sleep at the apartment on the 13th and be admitted for surgery on the 14th in the am. Later on the 14th we will all
be allowed to stay in Michael's room and Thomas's bone marrow will be dripped through Michael's IV and from that Michael will have a new chance at life. Jean & I just learned that when Michael receives Thomas's bone marrow he will become Thomas's blood type. Thomas will sleep at the apartment on transplant day as well.
Bye,
Mike & Jean

Friday, June 10, 2005 9:11 PM CDT

Today was great!
Michael woke very happy to see Joey in the room with him. After breakfast it was time for vitals and the scale. He is holding steady with his weight, at 14.7 kg. His ANC (absolute neutrophil count) was 486 so he had to wear a mask as they were off to the playroom.
It wasn't long before Thomas arrived wearing, guess what: a Spiderman costume, complete with bulky muscles.
Naturally Michael wanted to put his own costume on so there would be Two SpiderBrothers. Thomas had to be seen and questioned by the nurse before he could go with Michael back to the playroom. They had fun!
Michael is enjoying the fact that he is able to be disconnected from the IV pole during the day. He just gets fluids at night.
IT IS GREAT TO HAVE THE FAMILY IN TOWN!!

Thursday, June 9, 2005 5:28 PM CDT

Hi everyone,
Today is a good day. Michael had to get red blood cells this
morning, this will give him more energy, not that he lacks energy. Michael saw the doctors and they say he is doing very well. Dave is updating pictures now ,so Thanks. Jayne Cash from the bone marrow unit is preparing to set up Michaels work up for the bone marrow admission. After this round we will be out patient for two weeks while they do the work up. Michael will have a third central line as an out patient on or around 6-27-05, at that time,while he is sedatied they will also do another bone marrow proceedure.
Joey, Jewel,& Thomas, have arrivied to live at the apartment.
Jean's Sister Paula, brought the kids from Charlotte,seems long overdue but we managed to get through the school year.
Michael,s ANC = 1110 today so he has a day or two before he has to wear a mask so he will enjoy playing with his Brothers & Sister.
Take Care,
Mike & Jean

Tuesday, June 7, 2005, 9:30 PM

Michael says, and I quote:


good morning
We found an American flag.
abcdefghijklmnop...next time... actually what did you say? Cuz I forgot.
I think I am all done.
giggle giggle
Just kiddin'!! Don't make me get the hicKups!

Today I played Nemo on XBOX [again] and I got a STAR!! !! That means I completed the level and lit all 35 of the 35 mushrooms! It was really cool. And I got to go to the Catch Dory part. It was really hard because she is fast. I think she might be running away from me. [they are not mushrooms and he made mom chase dory]

I didn't see Trey today. PHOOEY! Or Androgeena, phooey.

The doctor says I am doing really well, after I tell her I am "Fine!".

I'm hungry. I ate a lot today. Thanks for praying for me. I miss my nursery friends,and...[names said too fast to type]... I miss everyone except for the doctors ...and Julie. Can I help Julie work tonight? wWAAAAhaaaa! [he didn't think she had gone home! Gotta go!]

Sunday, June 5, 2005 & Monday, June 6, 2005

A special "Hello" to our Park Road family. Thank you for your prayers, and friendship, and concern! You are welcome to keep in touch with us. We wish you a great Summer!

Special "Get Well" greeting to Mister Dave! We hope you are feeling Spidey-strong soon!! (We say "I", "I", "I")

Happy Birthday Ms. Virginia!!

Love to all !

Saturday, June 4, 2005 10:40 AM EDT

Michael is feeling "fine, now", after having asked for "naw-shus medicine", with good reason. I figure it is bad if he is requesting medicine. He takes after Momma there.
Fear not, for Patrick Michael is taking good care of Michael Patrick.
The chemo dosing is over for round three, and he only has a dozen more doses of eye-drops left.
Certainly, it IS all good.

Friday, June 3, 2005 1:00 PM CDT

Hi everyone,
Today is going well,Grandma Jo came last night. Michael
is wearing a spiderman outfit today and the staff is geting
a big kick out of him. I think tonight is the last dose of chemo for this round. His numbers will soon go down and then recover, after that the bone marrow unit will start the work up on Michael. The work up for bone marrow is done out patient at the childrens hospital, then he will be admitted on the 5200 bone marrow unit. The way we understand it we will have to be at Duke for ninty days from the day of transplant.Thanks for all the support we feel very lucky to have such good family and friends.
Mike & Jean

Thursday, June 2, 2005

What a great day!
We signed out & went to see the concert! "Kelsey and Tyler" sang very well for us near George's Aquarium.
(Check out the link.) We even got their autographs, and Michael got to dance with them when Tyler sang "Dancin' in the Streets". It was fun for all of us.

Michael feels "fine"

Wednesday, June 1, 2005 8:20 AM EDT

Happy Birthday Dee!

Check this out: I slept like a rock! Right through the eye drops!! WOW Michael woke me at 7a.m. with, "Excuse me, Mom", and he is bright eyed and ready for Wednesday.

Yesterday he had some nausea (productive, "thank you for asking"), but he shows no signs of that now. His temperature is 98.2 degrees, BP = 85/45 and his weight is (drumrole please) 15.2 kgs. (up .2 from yesterday, and .4 from clinic check in). Fabulous.
So we are off to a great start and we hope you are too.

Love and Blessings,
and PEACE!

Tuesday, May 31, 2005

Happy Birthday,
To the best sister in the world, MEG, who knows how we would get through this without you,I love you, my wife loves you too. I never got the to or too thing down to well but I know all about two. Thanks for being here for us.
Check out this Birthday line up,
Meg
Dee
Jean
Mom
What next Tom & Sue on the same day.
Or John & Diane one week apart, anyway enough about Birthdays, Michael had a good day,we hope you all did to.
Love Mike & Jean.

Monday, May 30, 2005 4:18 PM CDT

Hi everyone,
We are back at Duke for round three.Michael checked in at the clinic @ 8:30am. He was weighed and measured and his blood was tested.Everything looked good. Then Dr. Burgos and Dr. Kreissman did a spinal tap and injected chemo in the spinal cord. Michael then went to the eye center and was examined ,all is well with the eyes. At 5:30pm he began
this round of chemo. Our time at home was very nice, we were able to spend time with all the other children, and some good friends. We are in room 5109 at Duke it is a corner room(seems like they like us here).Please keep praying for Michael.Also please continue for Bryce, Tyler and Lucille.
Thanks,
Mike & Jean

Friday, May 27, 2005 3:00 PM EDT

It has been wonderful to be HOME!
We seem to getting a pretty good mix of being busy and getting rest.
It is sad to think about leaving again already, but also very hopeful to look ahead to Round Three ... and beyond ... ready to "Reach The Day" ... CURE!
For now, we'll do Friday, wishing each of you a fabulous four day week-end.

Photos have changed a couple of times, and the links are below are new (Durham stuff).

Saturday, May 21, 2005 3:40 PM CDT

"Home, Sweet Home"
It has been so wonderful to be here! Friday was full of challenges. Among them were the fear of a postponed procedure, a faint Mommy, and a flat tire!
The procedure went on schedule. Mommy won't watch procedures with an empty stomach and aching head Ever Again!
And the tire has been plugged.
...
Saturday's biggest challenge is that Thomas is not feeling so well. In fact, it has been confirmed that he has Strep Throat. He got a one time injection of Bicillin, so we have no more meds to keep on schedule than we planned. We'll be washing lots of hands lots of times!!

Afraid to say more...

Blessings!

Wednesday, May 18, 2005 11:05 AM

Call me a kook, but I think Michael has A New Angel praying for him!
Just a day and a half ago, we were coming to grips with the possibility that we might not have a break from the hospital before Round Three. Now this morning, his ANC is 290. TWO-HUNDRED-NINETY! Can you believe it?!?!
And he weighs 15.2 kg. WOW! He has not complained about ear pain, and Dr. Rosoff thinks he will get a prescription for antibiotics to take home with him. Yes, you read correctly, he said home ("our brick house" as Michael says). He is going to ask Dr. Kreissman if we can go home today or tomorrow. Today! or Tomorrow! ?? We have a lot to do. Have you seen our walls?!

Now, chances are that we will not update each day while on break, so do not worry IF that becomes the case. It was a challenge last time to fit everything in!!
I personally am looking forward to some quiet time with the family, and perhaps an outing with each child... (Sure have missed that one on one stuff)

Okay, so let me get movin'! I'll offer it up as prayer! for Kim & her family, for Bryce, for Joe, for Cille, for Trevis, and in thanksgiving for Michael & all of you!

UPDATE:
7:27 PM
The latest plan is to leave Friday afternoon.

Monday, May 16, 2005 4:45 pm

Hi Everyone....

This is Meg...just wanted to give you a little medical update....I spoke to Dr. Kreissman today. She was very positive and upbeat. Michael has his ear infection which began with a low grade temp. It is quite painful to him at times because his ANC is rising and his immune system realizes that there is an infection to be fought!!!! So, the few circulating WBC he has are all headed to his ear to fight the infection.

When he gets fever..the doctors also draw blood cultures from his line to make sure that there is no infection in his line or body. One of the cultures did grow a bacteria...it has yet to be identified...he is on vancomycin which should cover the bacteria. He can't be released from the hospital until the doctors are certain that there is no underlying infection. The good news in all of this is that his ANC is rising so he will be able to fight infection and show us that he is fighting infection because without an ANC you can't get a fever response.

We will know more as the cultures have time to grow.

Michael will be scheduled for another bone marrow/ spinal tap/ chemo administration into his spinal column right before his next round of chemotherapy. CT Scans will also be done then.

According to everyone, Jean, Mike and the doctors, he is really holding his own and in good spirits when he doesn't have pain in the ear.

I'll speak to Jayne Cash from the Bone Marrow Unit soon...I'll keep you posted...
Meg

Monday, May 16, 2005 12:35 Eastern

DAY TWENTY-TWO of THIS stay at Duke. I remember that I lost count at this point last time.
Michael is still "FINE" any time he is asked. Though he has admitted some discomfort and pain since this ear thing started. For example:
We were on one of our walks on "Beach Freeway", and he suddenly needed to be held. I asked if he wanted to go back, but he insisted we continue to the bridge. Our mission was to see George's Aquarium, and he doesn't let much stop him once we're on our way somewhere. He got down again after the intensity weakened, and was able to enjoy the closed Health Center on foot.
I like best to take him to the least populated areas for his own health, but lately I must also think of others. I would not like it if any of our waiting friends got sick from him!! Chances are good that it is simply a regular childhood ear infection, and those haven't been proven contageous yet, but I'm trying to play it safe.
When the fevers subside, I'm sure Michael will be walking everywhere and waving at many, as if he is Mayor of the place once more.
Until then, we bid you peace!

Saturday, May 14, 2005 quarter after Noon here

HAPPY PROM DAY!

The scale registered 14.9 kg this morning. Not as much of an increase as I had hoped...
His appetite is not great today. Glad we enjoyed yesterday.

He is fighting a fever and ear infection, and getting a monthly (routine) dose of a medicine to prevent pneumonia.

He has been doing far better than expected, and so this isn't going to slow him down. At his request, we're off to walk.

Friday, May 13, 2005 10:25PM EDT

I can't wait to see what my baby weighs in the morning! He sure ate a lot better today than he did yesterday!
That said:
He gave in to nausea (you know what I mean) twice today. Then, in the evening he complained about his EAR hurting! I guess many of you know the runny nose can lead to that sort of thing. Here we go!
The meds are not here yet, but after a few phone calls and such, it has been decided that Amoxicilin (the yummy pink stuff) is not going to be good enough in this case. He has a fever, and an AML kid with fever gets serious doses of stronger stuff. He won't have to taste it though; it will be added to his IV fluids.
The prayer is still that he won't get any (other) infections! Thanks for each and every prayer!

Thanks for praying for Michael, and Bryce, and Cille!
Guess what!
Our buddy Trevis just moved in next door! We're praying for him too, along with Joe and Allan! When I think of each of you saying one prayer for each of them, it is powerful thing. I am humbled, and very grateful.

Blessings,
Jean (4Mike2)

Thursday, May 12, 2005 7:13 PM CDT

Hi everyone,
Today all is well,Michael has had a runny nose yesterday and
today but it does not seem to be slowing him down any.We all had a good day.We met with Jayne Cash yesterday and she
gave us a tour of the bone marrow unit,and we met Dr. Paul Martin who will be in charge of decisions pertaining to Michael when we go to that unit.Michael so far is having a better time as far as symptoms go compared to round one.We have one more round of chemo after this then one more break and then bone marrow in about six weeks if all goes well.Meg will talk to Jayne Cash soon and the Dr's and then she will post.Grandma
Jo is in Charlotte tonight and will be in Durham tomarrow,Michael will be happy.Michael has been having wonderful visits with Joni Peoples and her Mom & Dad it is really nice.We understand Joni's Grandmother Lucille is doing better so keep on praying. Bryce arrived at John Hopkins in Baltimore last week and is improving so we have had a lot of good news this week.
Please check out the links on this site
Jean works hard to research what she thinks is important so we want you to have a glimps at it as well.
Thanks
Mike & Jean

May 13th: weight: 14.8 kg... no ANC to speak of. Somewhat nauseous...he even requested medication for it... still eating better than yesterday...Still plenty of get-up-n-go!

Wednesday, May 11, 2005 8:49PM EDT

Our meeting went very well this morning!! Michael went willingly to the playroom where he was under great (and fun) supervision. That made it possible for Jayne to take us on a tour of "fifty-two-hundred". That is the Bone Marrow Transplant Unit. It is nice to have a look so far in advance!
We are still in Round Two! We'll stay here as long as it takes. We will tackle Round Three when the time comes. Only after Round Three is complete will it be time to move on.
Right now we will enjoy right now.

Wednesday, May 11, 2005 3:20 AM CDT

Good morning! This is an early bird bonus, I guess. (hint to check history if you're on the 24 hour checking schedule)
Michael woke me up to take him to the bathroom...
He is far more cheerful than Mommie right now! ;} He's shining the flashlight up at the sitckers on the ceiling. It will make the planets and stars glow. If I were more 'awake', I would teach him to say "il-loooom-in-nate". Alas, that fun is just for you!
Did you know that the IV pumps are illuminated when in use? He asked how I got it to light up. hee hee Ususally we turn the bright part away from his bed so as not to prevent his sleep.
Okay, so I look over and the pillow behind him is blue (it was a white pillowcase at bedtime). I told him & he said, "nau-aw", but as he turned to see for himself, I discovered that the flashlight was shining through the back of his shirt.
Hooray, he's saying, "Could we please go to sleep now? 'Cuz I'm tired before you." OH! That's what HE thinks! (Sorry, Mrs. West, I can't start my day yet!!)

God bless you! Good morning!!

(Goodnight!!! )

Tuesday, May 10, 2005 8:19 PM CDT

Hi everyone. Michael had an other great day!
He had a visit from Cousin Norine and little Frankie. Frankie is so cute and very smart. The boys had all kinds of fun playing on the playground. Michael played in the playroom, and got to play with Joni as well, this made Jean tired. (Micahel wore her out, not bad for a three year old who had a routine blood transfusion today).
Tomorrow Jean and I have a meeting at 10:00 AM with Jayne Cash from the bone marrow unit. We will let every one know how that goes soon.

An other day has come and gone and all we can say is that our guts tell us that we are one day closer to a cure.

Love to all,
Mike & Jean

Monday, May 9, 2005 8:40 AM CDT

Good morning everyone. We are doing well today. Michael needed some platelets, and he weighed in at 15 kg. His ANC is nearly zero, but he is acting and behaving as if well, with none of the adverse effects he had last time. The doctors say it is because he is in far better condition than the last time. (He was very sick when we got here.) We must remember that he has no immune system to fight off anything and so HAND WASHING IS A FREQUENT MUST! "No touchie" is the constant command on our many journeys and quests. We can't sit still, you know! (Although I must say the three of us SLEPT straight through the night last night! Did I mention we had a great time with our guests, including Paula and Tracy?)

Michael met some new friends just the other day in the lobby. The two families are fond of each other and enjoy sharing our 'hurry up and wait' time. They have been by our home on fifty-one a couple of times to visit, but our little trooper was resting up both times. Maybe today we will really play, or Wednesday for sure.
Meanwhile, we have added Lucille to our prayer list and you are each welcome to do the same.


"This Song of Love Is For Michael Wren:"
The words, music, and vocals are by Carl Allocco.
Just as you cannot hear the music and vocals right now, we cannot thank Carl enough!
WE LOVE OUR SONG OF LOVE FOR MICHAEL WREN! Here's how it goes:

He likes SpiderMan and Toy Story too
Riding his tricycle and
Super Mario Brothers on Nintendo

Michel Patrick Wren
Let's say that name again
Michael Patrick Wren
This song is for you
Michael Patrick Wren
How do you do, my friend?
Michael, you're wonderful!

Let's say hi to Mom, Dad
Thomas, Joey, and Jewel
His Godfather, Mr. Dave
And Mrs. Virginia
And his cousins too

Michael Patrick Wren
Let's say that name again
Michael Patrick Wren
This song is for you
Michael Patrick Wren
How do you do, my friend?
Michael, you're wonderful!

Cool, huh?!! Visit The Songs Of Love Foundation web site at www.songsoflove.org

Sunday, May 8, 2005 5:19 PM CDT

Michael Patrick just dropped off to sleep. Can you say fabulously fun week-end!? Sure, I knew you could. And we certainly did make this one all that and more. It has been so great! We are all needing a nap now, I bet. (this will be short for that reason) I didn't see the labs today, so I don't know his ANC, but if we didn't know, we wouldn't know he is even sick at all. He had lots of fun in a variety of ways. I think this morning's weight was 15.1 kg.
CHECK out new photos... End of update, now personal notes: (you may read too)

Karen,
"Wow! Thank you!" I told Dave you didn't tell him 'cuz he wouldn't get it. I appreciate it on many levels, so thanks for gettin' it And for sendin' it too!

"E",
I know you check in, so check out photos... see gift from Karen. I thought of you instantly as the person most likely to "get it". Thanks for always showing me how to remember it!


Lisa and Dan,
Unreal! We'll think about it!

Everybody,
Love and gratitude!!
Happy Mother's Day to each of you! You know we love you year-round!

Saturday, May 7, 2005 6:41 AM CDT

Good morning! It is MAY 7th! Yippee! We are going to have a party. "The Wiggles" are on to get us jumpin' early. ha ha and Starburst for breakthast!
Really, we are excited that in addition to the regular visit from Godfather Dave, we hear he is bringing his son, Paul. What a treat! I remember the first time we got an unrelated baby-sitter, it was Paul. Now he doesn't seem unrelated anymore. We hope it was only an invalid rumor that Miss V isn't going to be with them!! (Did you count the Blessing when you read the words "regular visit"? We sure did!)
Just when you think it can't get any better: AUNTIE is coming, AND she's bringing BOTH BROTHERS, And the SISTER!!
Wow! We've only had all four kids together at once for six days since St. Patrick's Day. That was a cool party too. I think of it often & sometimes feel like Harry & Janet are still at our house. Maybe Joey will bring the FIVE ribbons and the Medal he was awarded last night. Cool!

Can you tell we haven't gotten our lab printout yet? The scale will be here soon too.
One more thing: Michael thinks you are kind. He just thinks the Green Ranger is much more handsome than he. "Too bad", he says. (semi-sassy, not sadly)

Have a great day! I know we will. God bless you!

Friday, May 6, 2005 9:31 AM CDT

Michael is taking a walk with Daddy. His ANC is 192, so he is wearing a mask. He doesn't love it, but he knows it is needed. He has really been finding his way around here.
These days we call our room "Home on 51", that is not new. The ward is our "neighborhood", and the fifth floor, with halls in lots of directions is sometimes called the "city", and sometimes the "space station", and still other times it is a combination of both. When we travel via elevator (and I wish I could tell you how he pronounces that), we go to "the wishing well" that is a fountain in the main lobby, or the "secret walkway" that is a hall above the lobby. Each is as cool as we make it, so of course we play it up. As his numbers get lower and lower we will probably stay "on five" (no elevators) more so we limit the crowds of breathing beings.
He weighed in at 15.1 kg. this morning. He is in good spirits & has no IV pole now, and we'll probably split up the six hours off so he won't have to be on all afternoon.

Today the Pentecost Novena begins.
Blessings!

Thursday, May 5, 2005 8:30 PM CDT

Hello Friends,
Today went very well, Michael's ANC=400, this means his immune system is not able to fight infection, so we mainly
have to make sure he isn't exposed to any germ's. Michael
did very well during his first round, so we hope things will
go well this time. Michael had a visit from Cheryl Hadley's
parents today,very nice. The doctors are going to let Michael off his IV fluid six hours a day as long as he eats and drinks enough. With a six hour break from his IV he can
be free to move at his own speed, and let me tell you he's
quick. Michael is always talking about his brothers and sister, he saves them some of his treats,very cute. When he is a good patient he is one of the best, but wake him up from a sound sleep and you see the other Michael. This is semi funny and for sure on the lighter side, good thing this
round of cemo is over, so Jean could tell me that cemo is really chemo HA! Sorry for all the misspelling.
Good Night,
Mike & Jean

Wednesday, May 4, 2005 9:21 PM CDT

Hi everyone,
Today was another good day,Michael is done with this round
of cemo.His ANC=760,he is still full of energy but he is alittle pale compared to the last few weeks.We are trying
to get ready for the symptoms,and then the recovery.
Michael has been to the wishing well on the main floor a few times and he loves that.Mom takes him on lots of walks
on the 5th floor.
All is well in Charlotte thanks to all of you, we simply could not
give Michael the attention he needs from us if it was not
for all of you so thanks.We love to read your wishes to Michael.Our friend Bryce was air lifted to John Hopkins in
Maryland,yesterday I think he will do well their,and Jean and I want to thank everyone who is praying for Michael and Bryce.
Bye for now,
Mike & Jean

Tuesday, May 3, 2005 3:54 PM CDT

Hi All!!!!

This is Meg again. I had the chance to speak to Michael's doctor today and she assured me that right now he is doing very well. He is in what is called the honeymoon phase. His chemotheraphy is done for this round and we are waiting for his ANC and other blood counts to drop. When they drop, his immune system is depleted and he is much more susceptible to infection and abdominal irritation. But for now, we will take the good days!!

The plan is to probably do one more round of chemo... and then hopefully the bone marrow.

That's all for now...

Meg

Monday, May 2, 2005 7:52 AM CDT

Hi all,
Today is going well,Michael woke up with a good attitude,and is doing fine.I am starting to feel better,
I have been sick for a few days.Jean and I want to have
Meg talk to the doctors and post for you guys soon,we want
everyone to know how Michael is doing from a doctor in
layman's terms.Michael met a new friend Trevis he is eight
and has the same problem as us.The boys played in the halls
yesterday.

Sunday, May 1, 2005 6:05 AM CDT

:)
The day is so young and already full of nice surprises.
Jean woke hearing, "Excuse me, Mom". Kind of reminds me of how Thomas can not stand it when no one else to be awake once he is, so he must wake at least one person (I think we each think it is "always me"!)
The cheerful little Michael P. was asking me to had him some toys. As I did, I mentioned his eye drops were due. He told me, "nu-uh, Daisy already did 'em", with an audible grin. I decided to wait, find her and ask, and sure enough, he was right. She had done his morning chemo (ARA-C) which takes her at least five minutes to push into the line AND done his eye drops WITHOUT waking me up! Amazing?! I think maybe so.

Then, as a cool bonus, we see THERE ARE NEW PICTURES posted! Thanks, D!

If you didn't read yesterday's note, see History.

Yes, Thanks Pruncziks, and Kim, and Cheryl, and C.Lewis!
Thanks all of you praying for Michael!...and us...and Uncle Joe...and Bryce...

A word about Saturday evening: there was a race! Of course we are forced to "tie" each time, due to the line. Maybe we'll find some compitition before side effects set in. We've found new halls on five!

Much love and gratitude,
Mike and Jean

Saturday, April 30, 2005 7:45 PM CDT

Hi everyone,
Today was a good day.Michael's ANC is 1590 today,he has been getting cemo since Monday night.Michael got his weekly
visit from his Godfather Dave and his wife Virginia,he loves those visits.Michael's spirit his good so he laughs
when he is not doing his shy 3 year old act.Jean and I love it when we have good days with Michael.We have to say thanks
to Kim. Thanks to Cheryl for bringing Thomas yesterday it was good for Jean and Michael.Thanks for all the extra special people we have in our lives!
Mike & Jean

Friday, April 29, 2005 6:28 PM CDT

Hi everyone,
Today went ok, Michael had his central line changed today.
It looked like it was out of place by 1 cm. so the Doctors
were thinking to avoid infection it would be best to change
it. The attending Doctor called Dr.attory who did the procedure in Charlotte, and asked to make sure that the line
had one cuff or two, Dr. attory said it only had one, after the proceedure we found out the line had two cuffs,Oops another mistake which caused an unnecessary procedure.All in
all everything went well and Michael has a brand new line, but it is bad enough to have to deal with what Michael has to go through, it make us upset when we put him through any
extra trauma.
Michael did get a visit from cousin Cheryl and Big Brother Thomas, that was very nice.
The Doctors and Nurses at Duke are doing their best,and we know they truly care so today was just a day that I feel could have gone much better.
Thanks all,
Mike & Jean

Thursday, April 28, 2005 10:08 PM CDT

Plans for Friday include seeing THOMAS and Cheryl,
and trading Michael's Hickman for a Broviac.

Thursday, April 28, 2005 8:11 AM CDT

Good Thursday to you.
Web-slinger Michael slowly woke to a good mood, after his blood pressure and temperature were taken, and then he got on the scale. He weighed 15.0 kg.

He's having peanut butter on a spoon for breakfast. I now have permission to use my electric kettle in our room so I can make instant coffee. I just have to remember that BOILING water is hotter than the 190 degrees I'm used to at Home on Old Surry. ha ha

Last night's chemo, between hour zero and hour one, was delayed. We were going to wait for TPA to put in the red lumen to attain a blood return, since there hadn't been one for several attempts Wednesday. After the pharmacy took so long to mix it, and it was double checked that it would be safe to continue, the Daunorubicin was started about an hour and a half late. When the TPA was here to be given, guess what? A blood return without it!
It's all good.

So Michael is charging full force into an other great day. We are going to enjoy these pre-side-effect times while we can!! Maybe we'll race again! Only if the "streets of our neighborhood" (the halls) are not full of traffic. Either way, its a great day. Enjoy it wherever you are too!

Thanks again for the prayers, and support!
Blessings,
Michael J., Jean, and Michael P.

Tuesday, April 26, 2005 4:23 PM CDT

Hi everyone,
We are back and doing well. Michael's CT scan seems ok,he had a spinal tap today and Jean and I were able to sit in.
Michael was awake but sedated,he had no problems. We were moved into room 5112 just a little bigger than a cedar closet,then we moved again to 5124 where we are now,it is like having two cedar closets, wohoo! Michael is getting his cemo and readjusting to hospital life. Michael is starting to love pizza so watch him grow in the photo section of this web site. While we were home we saw good friends and family, we also reunited with our own children, we are counting our blessings and that was a big one.
Love to all who care,
Mike & Jean

Monday, April 25, 2005 11:31 AM CDT

Hi All!!!

Just wanted to update everyone who checks in regularly.....Mike, Jean and Michael are back at DUKE. They were seen this morning. Michael's blood was drawn this morning. He is currently having routine CT Scans and will then be hooked up to IV fluid and his chemo. They are waiting for a room. Mike wanted everyone to know everything is going smoothly for now.

We will keep you posted!!

Meg

Sunday, April 24, 2005 6:19 AM CDT

*
"Happy Birthday!", or "Happy Sunday!", to many others.
*

Saturday was great and we are expecting to have a great day today as well.
"Cousins are cool"! That's my story and I'm sticking to it.

Friday, April 22, 2005 5:33 PM CDT

What a beautiful day. Michael got to play outside with his friends again. His doctor said he can't go to Carowinds tomorrow. I guess we weren't really surprised by that. We hadn't told him we were hoping. He has asked throughout the winter, and we were planning to surprise him on March 18th by going in the evening. "... Someday..."

Time is going so fast at home and we will be back at Duke on Monday for round two of chemotherapy.
Uncle Joe and Michael Patrick are each scheduled for a CT Scan on Monday at 11:30, so in a way, they are getting a treatment together.

Thanks to everyone for... bringing food... and being concerned...
We appreciate it and can't thank you enough. At a more convenient time we will devote our efforts to helping people the way you have helped us.

Please continue to pray for Michael.
God Bless You!

Thursday, April 21, 2005 8:29 PM CDT

Hello everyone,
Michael is doing very well today. Jewel says she was not here for most of it,but when she came home Michael pretty much
watched power rangers. He played in the yard so stay tuned for
some very cool pictures compliment's of Dave. Grandma is here
to help out & as always is here when we need her. Michael had fun in the yard he played with Thomas and Gavin. Having a great break at home. Due back Monday at Duke for round 2.
Mike & Jean

Thursday, April 21, 2005 0:05 AM CDT

We know many of you "check in" early in the morning. Since we haven't had much luck with updates that early, this one is dedicated to you early birds.

Waking up in our own home was a great way to start this day.
And Wow! What a day it was. There were so many things to do, and time seemed to zip by.

Michael is being good about taking his medication. Joey helps a lot with the yucky tasting ones. The TPN (IV nutrition) set-up was easier to manage the second time.
So all in all, it has been a good day. I'm sure we'll sleep better tonight. (And while you early birds are reading this)

;)

Wednesday, April 20, 2005 10:24 AM CDT

Hi everyone,
We are home, it is really nice to have the whole family together. Jewel said it is booring when we are'nt around.
Michael is doing well, last night Joyce a nurse came over
and showed Jean & I how to hook up his TPN (food). We have
Michael hooked up for 12 hours a day, I should say 12 hours
a night because that is when we plan to have him conected so
he can be free in the day. We are due back at Duke on Monday
morning at 10 am. Michael slept in his fire engine bed last
night, very cute. We will update every so often.
Once again thanks,
Mike & Jean

Tuesday, April 19, 2005 7:23 AM CDT

So here we are. Michael is resting while his parents anxiously await the blood we've been told he's going to get. It will be giving him a needed "boost" for the busy week ahead. The only down-side is that it will take a few hours to complete. That does take the pressure off of us as far as packing up our belongings though. We have filled every nook and cranny of our cozy little home on 51.

This is also a very big day for Michael's "AML peer". Fourteen month old Bryce is having more than one very important surgery. We would love it if you would pray for him!

Many thanks!!

Monday, April 18, 2005 1:19 PM CDT

Hi all,
Michael is doing very well today. His ANC=1355.He is holding his weight at 31 lbs. Michael had a bone marrow procedure at 1:15pm today and that went very well, he did not make a sound. Because of the procedure he was NPO since midnight last night. When we came back to the room I feed him fried rice (he loves that because mom likes it). Then we had some pizza and ginger ale. Michael is happy to be watching the Power Rangers. Eariler today Michael and I went downstairs a went to the wishing well, his wish is I want to be the black power ranger for Halloween.
The way things look we will be allowed to go home on tuesday until next monday everyone is looking foward to that.When we are home a company will come and hook Michael up with IV food at night and draw what ever blood might be nessary. When we return to the 5100 unit next monday they will begin round 2 of cemo monday night.
Jean & I want to say thanks again to everyone involved in Michael's fight.

Sunday, April 17, 2005 9:05 AM CDT

If you have ever tried to keep up with a three and a half year old boy, you'll understand why we didn't post yesterday. We have been far too busy laughing and enjoying "the show".
Michael was 'missing' part of the day since SpiderMan "put him inside my costume". The nurse was concerned that his heart rate was 177 beats per minute, but little did she know ole Spidey had spent over an hour belly laughing virtually non-stop.

Hair is constantly everywhere! (even in our throats---"HairBall!") Nurses gave us tape many days ago so we "slap fuzz" quite a lot. He still looks the same except if you pay attention, you can see lots of pink scalp under there. Pink is good.
His ANC is 696 this morning, which is great. His stool, however tested positive for blood again. The doctors haven't rounded yet (here in our room) so we will see what they say about that this time. Perhaps he'll be NPO again (which doesn't really stand for "no pleasing options", but for the Latin for "nothing by mouth"...you already knew that), or maybe it implies an infection, or maybe... We'll let the team tell us & go from there.
There have been rumors of us going Home for a week, but several things must fall into place for that. We expect them to soon though. One is an ANC of 700! The blood in the stool needs to be gone or verified that it is not a problem (I don't know if that is possible so we'll shoot for gone). They'll take some bone marrow (again) on Monday, as this is always done...I am not sure what the other requuired things are but rest assured that the team is on it!

Friday, April 15, 2005 8:30 PM CDT

Hi all!!!

This is Meg with the latest medical information...

Michael's ANC (absolute neutrophil count) has been wonderful and rising. I think it was around 400 today. The ANC is a measure of what the white blood cells in Michael's body are doing. Your white blood cells are the part of your blood that helps to fight infection, they are made up of many different components, and from those components the doctors can look and see what kind of a response Michael is having. Part of the white blood count is made up of myelocytes- which are very early components of white blood cells- that is what got out of control and developed into Michael's cancer. A little confusing, but the reason I explain it is to say as the number was rising so quickly (and that is great) I was a little nervous that it wasn't the cancer cells rising....but I have gone over it now twice and the oncologists assure me that the cells are differentiated and "normal" white blood cells. So, his immune system is recovering and earlier than expected!!!
Hopefully, Michael will be able to enjoy a little time at home-in his own bed.
The doctors have also been watching him closely becausing he has been breathing quickly. His chest x-rays, blood work, and level of oxygen in his blood have all looked good. The thought is that he is fluid overloaded between all the fluid to give the chemotherapy and the intravenous nutrition. He has been getting Lasix (to force his body to get rid of the extra fluid) and it has been working.
Right now, his body is doing what it is suppose to do and regrouping from all the chemotherapy. He will hopefully get to go home for about a week and then its back to Duke for another round of chemotherapy, more recovery time and eventually the bone marrow transplant.

I'll keep you updated as I get the information

...Meg...

Thursday, April 14, 2005 9:50 PM CDT

Hello,
Today was a good day. Michael's ANC is 400 thats good!!!!
Michael has been breathing alittle fast today and that is one of the paramaters that can delay his one week break from the hospital. His ANC is recovering faster than anyone could hope for.His biggest delimma today was that he wanted MRS WEEB to visit him so Jean pasted a picture of her and Thomas right in front of him.(That did not work out very well!) If things continue to go as well as they have been it will not be long an he can get his week off.
Today Michael had an Echo Cardio Gram and we are waiting for the results.

Wednesday, April 13, 2005 6:22 PM CDT

Hi everyone,
Michael is doing well today.His blood counts are growing two days in a row, everyone is happy with that but we have to wait and see, the doctors say that sometimes they go up and then drop before they get better.Michael's ANC count is 80 today when it hits 750 his immune system will be able to defend him. He is on all kinds of medicine to help him to achieve that.Michael has the best care possible, His nurse Patrick Michael Murphy is a real clown.This helps!
Michael got a visit from Tracy & Jen today, He was very happy.
I went to the camera store and had some pictures put on cd
and sent to Dave today so soon we will update some pictures.
Jean & I want to let you know we are doing ok and say thanks to all of you, we will never forget any of you!
Mike & Jean

Wednesday, April 13, 2005 7:40 AM CDT

Hello,
Yesterday was a great day, Michael was allowed to eat,
so we got him chicken nuggets, french fries ,ketchup and
ravioli. He is joking around with the staff and they love
him. He is testing negative for blood in his stool for two
days now. Michael's still nauseous but doing much better than he was a few days ago. His blood work is looking good but they say we still need to wait and see because often the numbers fluctuate. We think he is over the hump on this frist cycle. The doctors said that the cat scan simply looks good.

Tuesday, he was up at 6 am and didn't stop all day! He slept (well!) from 7:30pm until 4:30 am. He actually started his Wednesday around 7:30 or so. What fun! Increasing "ANC" is wonderful!! Happy Wednesday!
(ANC -oversimplified!- is the summary of lab results of blood tests.) Remember, he is NOT getting stuck by needles for the daily labs, etc. Hooray for central lines!

Tuesday, April 12, 2005 8:59 AM CDT

Hi All!!!!

It's Meg ....just wanted to fill you in on what I know....I just got off the phone with Michael's doctor. Everything looks very good.....His episodes of very high fever, hypotension (low blood pressue) are improving. He is on broad spectrum antibiotics/ antifungals on is on the right track. His CT Scan over the weekend should no infection or bleed in his head (THANK GOODNESS). The scan wasn't ordered to evaluate the original tumors/ chloromas so I do not have any news on that front. His bloodwork seems encouraging although it is to early to make any judgements from his new numbers.
He will have a second induction phase ( a repeat of the one he just had) in about 5 weeks time. We will cross that bridge when we come to it.

The doctors may let MIchael eat today...it won't be chicken nuggets or french fries....but its better than ice chips!!!

Michael is teaching me a lot......he is such a strong, tough KID!!!!

I asked the doctor today the actual odds that Thomas would have been a match (WE ALREADY KNOW HE IS A MATCH). He told me 30%. I am glad we were on the better side of those odds!!!

I'll keep you posted.

Monday, April 11, 2005 9:51 PM CDT

Hi all,this is Mike,Jean & I just want to let you know that Michael is still being strong. He really has no immune system so what he does have is THE DOCTORS, HIS PARENTS,& ALL OF YOU SO THANKS FOR YOUR SUPPORT! Michael is fighting like a navy seal. He acts like himself and even amazes us. We hope in a week or so he will be regenerating his immune system and he can have some good days in a row. Michael is still NPO (no food by mouth) and we are having a hard time trying to convince him that ice chips are just as good as chichen nuggets french fries and ketchup we hope that tomarrow we can reintroduce some real food. I have some new pictures that I will get to Dave so he can update the picture section soon. Bye for now,
Mike & Jean
PS: Joey Jewel and Allie DON'T MISS YOUR BUS Mom & I know you Know what we mean.

Monday, April 11, 2005 10:00 AM CDT

We are "home" on 51 North again! Michael Patrick is pretty excited about that. There are some specific concerns the staff here is "keeping an eye on", but he's happy and alert, and all in all he is doing just fine. Peace!

Monday, April 11, 2005 8:50 AM CDT

As you may remember, the PICU does not allow visitors
(or Mommie hair) between 7am and 9:30 am, so I was here at
"home" (on fifty one), just about to go back, when DAD called. They are going to be coming home to 51 North pretty soon! He will be more comfortable here, and as parents, we will take comfort knowing that if he needs to go back for more attention, they will be ready for him again. No further update, as I am on my way to join Mike at Michael's bedside. It's going to be a great day! Notice it, and enjoy!

Sunday, April 10, 2005 9:34 PM CDT

Hey! :0)
PLEASE READ the HISTORY section FOR THE LATEST MEDICAL UPDATE. I am simply adding this entry to assure you that we are each doing well. Michael Patrick is sleeping nicely, and after he answered some basic questions* I felt I should let him rest. He's in his own bed. Nurse Lauren (the name must be a good sign!) will call me when he wakes up. Hopefully I will have gotten some rest by then too. I am not far away, here @ "home" on fifty one! I gotta tell ya, this room ain't so small without the bed in here! Plenty of room for my cot!
Michael J. is also just a phonecall away @ the BWI.

Again, understand that we are okay, and we appreciate YOU very much! "It's all good!"!
Blessings,
Jean(4Mike2)

Sunday, April 10, 2005 8:21 PM CDT

This is Meg (Michael's Aunt). Michael was transferred to the Pediatric Intensive Care Unit (PICU) tonight. He complained of headache, was vomiting, spiked fever, and then his blood pressure dropped. He had received a lot of different medicines: Benadryl, Phenergan, and Ativan to combat some side effects of medicines and his vomiting which themselves(the drugs) make you very sedate. Because he was so sedated, the doctors felt that he would be safer and more closely monitered in the PICU.
He may have infection since his immune system is so supressed from the chemotherapy. He is receiving multiple antibiotics/antifungal medicines to protect him. In addition, he is getting platlets and fluids to keep his blood pressure and heart rate stable. A CT Scan of his head was ordered but not done yet to evaluate his complaint of headaches.
The PICU will afford Michael one to one nursing care and monitering.

This move is not one that was unexpected during the course of Michael's treatment. I will keep you posted as the situation evolves.

Mike and Jean want to thank everyone again for their warm wishes and prayers. Chris-I hear the big kids are doing great!!

Sunday, April 10, 2005 8:40 AM CDT

Good morning, today is going ok, Michael has been NPO {nothing by mouth} on and off since yesterday. The doctors want him to rest his digestive tract, they will allow him to have clear liquids. He is nauseous but he keeps telling me I HAVE TO TELL YOU SOMTHING, when I say what he says I want chicken nuggets french fries and ketchup. All I can do is tell him when the doctors say ok I will get that for him. Jean is better at dealing with that than me but I am working on the art of distraction. Michaels temperature has been between 99.8 & 102 during the night they have started more antibiotics and tylenol, the hair is coming out slowly and he is having liguid stool's. His brother Joey got to come with Dave and stay the night, that was good for Jean and for Michael. All is well at home thanks to my brother Chris and a few super neighbors. thanks ! Mike & Jean

Saturday, April 9, 2005 9:58 AM CDT

Hello everyone, today is a good day,Michael slept good last night. He has been NPO since yesterday but the doctors said he can eat light now, Michael had a cat scan yesterday and the doctors said it looks good. The site where the biopsy was done is showing something and they are checking his other ct scans and the report from the sergon that did the biopsy. Michael's internal organs look good. He is loseing more hair on the pillow. The other day uncle Kevin came to see Michael and Michael was so happy to see him. The doctors are execpting Michael's symptoms to get worse and then get better and they are takeing some premptive measures to avoid whatever negative effects they can in advance. Please check journal history for any other post's we may add later in the day. Thanks Mike & Jean

Friday, April 8, 2005 10:33 AM CDT

Look, an other Blessing to be counted: the date is automatic! Not that i don't know what day it is (ha ha)! I think it is the 16th day here at Duke UMC. I am beginning to navigate my way around a bit better, thanks to the many individuals who took me on trial outings. I must say, that I haven't looked for Wachovia again!!
Yesterday, we neglected to share with you that the Opthamologists see a DECREASE in the swelling of the optic nerve(s)! Dr. Q. even said he'd call Dr. M. with the news. I hope Dr. M. is feeling much better each day!! (much emotion here)

Today we were reassured that nothing that is happening with Michael Patrick is a surprise to the medical staff. Chemo is pretty strong stuff and he still yet will probably get sicker before he gets better. We have been calling our room "home" for quite a while now. That will help in returning, if we need to go to PICU for a while.Thanks again for all of your greetings and wishes. Mike & Jean

Thursday, April 7, 2005 11:57 AM CDT

HI ALL!!!

It's Meg again!!! Today I have GREAT NEWS!!!!!!

THOMAS (Michael's big brother) IS A 6 out of 6 HLA MATCH !!!!!! That is the criteria to be a donor for bone marrow. It is more than we could have asked for!

That means that Michael will be able to have matched BONE MARROW TRANSPLANT!!!!! He will of course need to have at least 1, maybe 2, more rounds of chemotherapy.

Today, his counts (blood counts) are very low. That is to be expected so he is very tired. His platlets are very low and he is testing positive for blood in his bowel movements. Again, it is to be expected. The chemotherapy he received is very hard on his intestines and the low platlet count doesn't help- but the doctors are following that very closely!!!

His most recent CT scans show some residual growths. The current thought is that when the chloromas (growths of leukemic cells) were growing, new bone was growing with them and that is what is being seen on CT scan.

Michael will have a repeat CT and bome marrow when his blood counts return to normal (which may take 4 weeks).

The doctors and nurses will follow him closely during that 4 week period for fever and infection. He is on antibiotics and they will add more if and when he gets fever. His body is fighting a battle.....

THE BEST NEWS IS THAT THOMAS IS A MATCH!!!!!!! The rest is to be expected and is normal.

REMEMBER TO READ JOURNAL HISTORY FOR INFO AND THOUGHTS FROM MORE IMPORTANT PEOPLE LIKE MOM AND DAD!!!!!

Wednesday, April 6, 2005 11:40 AM CDT

Hi everyone, today is going good, Michael is tired and his blood counts are very low, the vomiting continues,but the medicine helps. Michael is getting red blood for the next three hours.We spoke with the doctors and they think Michael is doing well, they will speak with Meg tonight and she will post an update for all to read later tonight,I think. To stay informed please always check history. Due to a diffrent medical problem, our original plan to have Jean's sister watch our big children has been changed, my brother Chris is watching them, and soon his wife will take over until aunt Paula can relieve them. Get well soon Justin!!! Michael is really tolerating his treatment like a big boy. He loves when we read the messages from the guest book, thanks all of you .

Wednesday, April 6, 2005 8:15 AM CDT

Happy Wednesday! Here's the Mom stuff for now until someone bumps it for the real information. Me, I just do "right now" over and over again, so I don't have many answers, unless you want the latest "right now"s.
Michael had a doughnut hole around 4:15 AM... he thought it wouldn't stay, but Gingr Ale helped. :0)
He is watching (guess what?) TOY STORY!! Buzz and Woody still rule! (SpiderMan, too, but we don't watch that much).
He has enjoyed The Incredibles a few times too.
This morning he had a real bath--his first time sitting in water since Hemby. It felt good to have a shampoo with fingers instead of wash cloth, with a true rinse. Yeah yeah Mom stuff. Praise and giggles. We combed it poofy before it dried...Found some hair on his pillow later.
The MDs will be here soon. They come in bunches each morning. MP really puts in a full day by 11 am or so. Sleeping almost all afternoon is not unusual. He gets his weight checked each morning by 9! Sometimes in the afternoon too. He has learned to stand alone very well. Gotta say, it didn't take long to figure I didn't need to step on the scale twice! Those of you trying to avoid admitting your weight, I recommend counting in Kilos! (kg)
One more thing, CHECK THE HISTORY. Especially if this is your first visit. If 1st, please also sign the guestbook, even if only "hi", it means a great deal to see you each represented here.
Much Gratitude,
j

Tuesday, April 5, 2005 8:33 AM CDT

Good morning, today is going ok,much better than yesterday.Yesterday Michael's sodium was low and he was very tired. This morning he is awake and watching Blues Clues, he is still nausious. One more day to go and he can stop getting special eyedrops to prevent pink eye. Michael had a stomach xray yesterday because of his tummy pain and the doctor said it looked ok except for the tumor around his abdoman region that they already new about. The doctor changed his zantac from oral to IV,which is good because he really did not like the taste, every little bit helps because it is more comfortable for him this way. Michael's blood pressure is better than yesterday to. The doctors put Michael on antibotics yesterday as a precaution, his temperature is ok but his ANC is 16. When you read these updates please check the history because if we every time we update the previous one goes into history. Jean and I want to thank you all for your heartfelt messages and prayers.

Sunday, April 3, 2005 3:25 PM CDT

Hi all-
This is Meg, Mike's sister. I am going to provide the medical information to the best of our knowledge- to keep every informed and as up to date as possible.

Michael has Acute Myeloid Leukemia (AML). The disease has about 7 subtypes. Michael's is typed as stage M4. All the staging tells the doctors is where his cells went out of control and became a cancer. It also dictates the type of chemotherapy he receives.
Michael is currently getting Decadron ( a steroid) to reduce the size of the chloromas (or masses behind his eyes, off his facial bones, and in his pelvis), and a chemo called ARA-C. I believe he gets 12 initial days of the ARA-C, then time for his body to recuperate and then he will go through that cycle again. At the end of 28 days he will be retested with CT scans and a bone marrow and we will know if he went into remission.
Michael is now feeling the effects of the chemo- he is nauseous and vomits after eating; as well as being tired. His hair is starting to fall out. He is getting special medicines to curb the side effects- the only bright side in those side effects is that the chemo destroys the good cells along with the bad- and we want all those cancer cells gone!!!
Michael had a CT scan on Friday and right now the results are very unofficial. We know the size of the chloromas have decreased. The doctors will evaluate the CT scans and compare them to previous studies tomorrow.

I will keep you updated with any new information as we get it!!

Saturday, April 2, 2005 3:14 PM CST

Michael Patrick says he is "fine". His belly hurts a bit but he would rather not admit it. Today is day 9 (of 10 days of chemo). He looks more like himself than he has in a while, though very tired. Being so tired is right on schedule. The doctors couldn't ask that he be doing any better. They are also blessed with the added bonus of him being so very cooperative! He makes it clear that he isn't happy that they are checking him so often, but he is the mannerly kid you know. They are a bit amazed, I think.
Right now he is playing Super Mario on Gamecube in his bed, after a bike ride to the fishtank with the coolest folks on Earth. He is waiting for a doughnut. At 3 AM he wanted fried potatoes. He had a Fruit Loop cereal bar at 4 AM instead. Then Dad got him hash brown patties for breakfast.

I cannot find words to express our gratitude to all of you for your faithful prayers, and the many helpful things you have done!! Thank you.

Justin, you hang in there and recover knowing we love you and are praying for you as well. Go Heels! Right?!
Michael is finished with Mario so I'm back to Mom again. ;0)

Friday, April 1, 2005 12:23 AM CST

Michael is doing well today, he had a cat scan @ 9:30am and did not need sedation yea! The cat scan showes that his cemo is doing it's job. My cousin Norine came to visit and brought her daughter Lizzie and Michael's sister Jewel. Jean and Norine went out for awhile which makes me happy. Grandma is going home today. Michael's hair is coming out on his pillow alittle but that is to be expected,and Jean & I are trying to help Michael understand he is sick but will be better before to long. Jean & I are grateful for the support and prayers from all of our family on both sides and all of our friends, Thanks.

Thursday, March 31, 2005 5:59 PM CST

Today was a good day ,at the current time Michael's blood pressure is 102/46 he is very tired but being a very good boy. Tomorrow @ 9am he is going to have a cat scan.The staff has been great and everyone here loves him.He rode a tricycle around the unit yesterday and he had fun.Jean and I will add pictures and updates as often as we can. Michael is in room 5127 @ Duke. Jean's sister is going to stay at our house in Charlotte and watch our older children, my cousin Jim Drohan and his wife Cheryl are going to watch Thomas until Michael, Dad & Mom find a way to beat this disease. Jean & I truly appreciate everyone's prayers.

Thursday, March 31, 2005 4:17 PM CST

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