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Tuesday, February 24, 2009 3:16 PM PST Today would have been Madi's 8th Birthday! Wow!
Mikey just turned 11 on the 16th...also hard to believe.
We sure miss our little Princess!
Marian and Mike
Wednesday, October 28, 2008 10:42 PM PDT
We sure miss our Princess!
Mike and Marian
Tuesday, September 23, 2008 11:29 PM PDT Dear Friends and Family,
Next month, October 28th, will mark the 5th anniversary of our losing Madi. Hard to believe. We still miss her so much which is one of the reasons why you still keep hearing from us about these fundraisers...
We are not going to be able to actually attend this year’s Light the Night Walk, as we are going to be out of town for a business meeting that weekend. This is the first walk we will have missed in 6 years. The Leukemia & Lymphoma Society, and all of the families that count on them, still need our help, so we are asking you again to support this incredible organization.
Although we won’t be able to enjoy the evening of fellowship with our friends and family, and we will miss being a part of the actual event, we are still looking forward to making a difference. Thanks to many of you, last year Princess Madi’s Family and Friends Team raised over $10,000. We want you to know how much we appreciate that, and we hope you will again find it in your hearts to donate in Madi’s memory.
You can go to our Light the Night web site at:
http://www.active.com/donate/ltnSanta/princessmadison08
or you can send a check made payable to LLS to:
Mike and Marian Mitchem
12182 Abington St.
Riverside, CA 92503
The walk is taking place on October 4th at Cal Baptist University in Riverside. Any donations received before the end of October will still count towards Madi’s team.
Thanks and we look forward to having you join us again when we walk in ‘09.
GO HUG YOUR KIDS!
Mike and Marian
951-288-4976
Friday, August 24, 2007 2:54 AM CDT I wake up every morning to a picture of Madi. It’s not always the same picture. It’s not even in a frame. You see, the picture that I wake to is a picture inside my head. It used to upset me, and sometimes it still does. But all I have left of my little princess are memories. So I cling to them and cherish these short glimpses of the special time we had when a princess lived at our house.
October 28th, 2007 will mark four years since we held Madi as she lost her fight with Leukemia. It’s been said that “time heals all wounds.” It seems that four years isn’t time enough. I think I’ve just gotten better at hiding from the pain, ‘cause in a blink, I’m holding her in my arms, and she’s slipping away. It’s a feeling I pray that you will never have to understand.
This is why we continue to support the Leukemia and Lymphoma Society’s “Light The Night” walk. For six years our team, “Madi Mitchem’s Friends & Family,” has been raising funds for and walking in this event. The first two years with Madi, and for four years in her memory. In 2004 and 2005 Madi’s team was the #1 Friends & Family team, and in 2006 we were #2. We will keep raising funds for this cause until a cure is found. We want to stop this disease from tearing at another family as it did ours. Marian and I can’t do it by ourselves, but if you join with us, together we will make a difference. Our goal this year is $5000.00. Please give generously and remember, ANY amount you can donate counts and will be appreciated. Every dollar makes a difference. We are asking for your support to continue providing hope for other patients and their families.
Please make your donation payable to LLS, and send it to:
Mike and Marian Mitchem
12182 Abington Street
Riverside, CA 92503
All donations must be received by September 25, 2007 as we will be turning them in on the 26th, or
If you would like to donate online:
Go to http://www.active.com/donate/ltnSanta/PrincessMadi2007
Then follow the directions under ‘MAKE A CONTRIBUTION.’
If you would like to join Madi’s team:
Go to http://www.active.com/donate/ltnSanta/PrincessMadi2007
Click on ‘REGISTER TO WALK’ on the left side
Click on ‘Join Team’
In the ‘Search By’ box, scroll down to ‘Team Name’
In the ‘Search’ box, enter Madi Mitchem and click on ‘Search’
Then click on ‘Madi Mitchem’s Friends & Family’
Once you see Madi’s picture, scroll to the bottom of the page and click on ‘Join’ to register for the walk.
This year the walk will be on Saturday, September 29, from 4 to 8 p.m. at the Rancho Cucamonga Epicenter. From Corona/Riverside area, take I-15 North to Foothill Blvd. exit and turn left. Turn left again at Rochester Avenue. The Epicenter is about one-quarter mile down Rochester on the right side of the street. Team pictures will be taken about 6:00 p.m. and we’d love to have you be in it.
Marian and I hope to see you at the walk and thank you for your support!
Go hug your kids!
Mike Mitchem, Madi’s Daddy
(951) 288-4972
Thursday, March 8, 2007 11:30 AM PST Hi everybody--
I want to say a huge thank you to all of you who came out and donated at the two different blood drives we did in Madi's Memory in February! The drive at La Sierra Academy was awesome...they collected 60 units of blood! There were 20 of the academy students who donated, 20 faculty, and 20 parents, friends, family and community members.
The drive at our church in Riverside collected another 45 units of blood! Yeah!!! It's a fairly small church, so that was really cool! We even had a few friends that came to the church that day just to donate! Thanks!!!
Right now we are involved in a fundraiser at La Sierra Academy for the Leukemia & Lymphoma Society's Pennies for Patients Program in memory of Madi and in honor of Kristin Kuntz, a kindergartener that attends there. They're running the fundraiser until March 23rd, and the students have already raised over $5000! I'm so proud of them!
They are having a little competition between the classrooms, and the classroom that raises the most money gets a pizza party. It's amazing how motivating pizza is for kids! Really though, there are so many awesome stories of kids bringing in all the money from their piggy banks, their birthday and Christmas money and even their life savings to do what they can to help kids with cancer. It's very touching!
If you are interested in donating to Pennies for Patients, they don't just accept pennies! They'll take any denomination you want to give, including bills and checks (made payable to the Leukemia & Lymphoma Society.)
If you want to help Mikey's 3rd grade class be the top fundraiser at LSA, just send in your money so it reaches us by March 22nd, so we can take it to the school before the cut-off date on the 23rd.
Our address is:
12182 Abington Street
Riverside, CA 92503
Or call if you have any questions...951-288-4976.
Thanks again to all of you who came out and donated blood, and thanks to the many of you who have supported the Leukemia & Lymphoma Society in the past. We so appreciate what you're doing, and we believe we will one day soon see a cure for leukemia!!!
God bless! Go hug your kids!!!
Marian, Mike and Mikey Mitchem
Princess Madi's Family
Wednesday, February 7, 2007 7:26 PM CST
Hi Everybody–
Hope you are all doing well and enjoying 2007. We can’t believe it’s already February!
We would like you to please consider joining us for one of the blood drives we are coordinating this month in Madi’s Memory. Our little princess would have been 6 years old this month. There are still so many families out there fighting the fight we know all too well, and we just want to do all we can to help make sure that when their babies need transfusions, there is blood available. The blood bank is at a critical low right now and they really need all of our help!
The first blood drive will be held at La Sierra Academy on Tuesday, February 13, from 1:00 to 7:00 p.m. LSA is located at 4900 Golden Avenue, Riverside, CA 92505.
Take the 91 Freeway to La Sierra Avenue exit and go North 1.8 miles.
Turn left on Pierce Street and go .3 miles.
Turn right on Golden Avenue and the school is on the left.
The bloodmobile will be in the Academy parking lot.
The second blood drive will be held at the Riverside Community Church on Saturday, February 24th (Madi’s Birthday,) from 9:00 a.m. to 2 p.m. The church is located at 4850 Jurupa Avenue,
Riverside, CA 92504.
Take the 91 Freeway to Central Avenue exit and go West (towards the Riverside Plaza.)
Turn right on Riverside Avenue.
Cross the railroad tracks and continue to Jurupa Avenue and turn left.
Cross Magnolia Avenue, Brockton Avenue and Palm Avenue.
The church is 1/2 mile past Palm Avenue on the left side.
The bloodmobile will be in the church parking lot.
If you would like to sign up in advance, please contact me at 951-288-4976 and I’ll put your name on the schedule, otherwise, you can just show up. The entire donation process takes approximately 1 hour. For more details about donating, I have included information at the end of this email. You will also have an opportunity at the LSA blood drive to become a part of the Bone Marrow Registry if you are interested. There is normally a fee of approximately $85.00 to join the registry, but with a blood donation on February 13th, they can type and screen you for the registry for free. A video and additional information about the registry will be available at the blood drive.
If you are anywhere close to Riverside and can make it out to either of these blood drives, we would be so grateful! Unfortunately, we weren’t able to keep Madi here on earth with us longer than 2 years and 8 months, but because of the gift of so many life-saving blood transfusions, we were able to enjoy much more time and create many more memories with her than we ever would have otherwise. Please do what you can to help another family have more time with their loved one.
Thank you!
Love and hugs,
Marian and Mike Mitchem
(Princess Madi’s Mom and Dad)
Who Can Donate Blood?
A full 60 percent of the U.S. population is eligible to donate blood. The unfortunate fact, however, is that, nationally, only 5 percent actually do. Locally, in the Inland Empire, only 3 percent of those eligible actually donate. To donate the gift of life, you must:
* be at least 16 years of age (those who are 16 years of age need a written parental consent and those that celebrated their 76th birthday need an annual consent from their physician)
* weigh at least 110 pounds
* have blood pressure between 90/50 and 180/100 with a regular pulse rate between 50 and 100 beats per minute
* have no history of Hepatitis (age 11 and older)
* must be free of high-risk behavior/infectious disease including high-risk sexual activity and/or IV drug use
* not have received a tattoo within past 12 months (body piercings are okay as long as sterile needles were used and there are no signs of infection)
* provide specific destinations and time periods, if you have traveled outside the country.
How Often Can You Donate Blood?
Amazingly, your body quickly replenishes any blood that you donate. In fact, a healthy adult can donate whole blood every 56 days – or approximately 8 weeks. Plasma can be donated as often as once a month. Platelets can be given every 2 weeks up to 24 times each year. When you give through automation, also known as apheresis, you may be able to save more lives more often.
The Donation Process
Making a donation of life-giving blood takes less than one hour. We include a brief medical history, check your blood pressure, pulse, temperature and your body’s iron level.
Only sterile, sealed and completely disposable materials are used once and then safely discarded.
IMPORTANT: You cannot get AIDS or any other disease by donating blood. Period.
There are four easy steps to becoming a red-blooded hero and give the gift of life:
1. REGISTRATION
Sign in and complete a brief health history questionnaire (approx. 15 minutes).
2. MINI-PHYSICAL
We will give you a “mini-physical” to review your medical history, check your blood pressure, pulse rate, body temperature and iron levels (approx. 15 minutes).
3. BLOOD DONATION
Your life-giving blood is drawn by a skilled medical professional using new, sterile and disposable materials (approx. 15 minutes).
4. COOKIES AND JUICE FOR ALL!
You’re already done! And, in addition to the wonderful feeling of satisfaction you have from knowing that your blood will help save someone’s life, you’ll enjoy cookies, drinks and healthy snacks while relaxing in our canteen area.
How Will You Feel After Donating Blood?
In a word, great! After all, you will have the satisfaction of knowing you have helped to save someone’s life by simply donating blood.
What to Bring With You
When donating blood, please be sure to bring a current photo ID, preferably a valid Driver’s License. If you don’t have one of these, another form of ID with your photo on it is necessary.
What to Eat Before Donating Blood
Before making a life-giving blood donation, you should eat at your regular mealtimes and drink plenty of liquids. You might also increase your consumption of “iron rich” foods a few days before making a blood donation because only donors with good iron levels are able to give the gift of life.
Thursday, September 21, 2006 11:22 PM PDT Madi Mitchem's Family and Friends
2006 Light The Night Walk
Hi Family & Friends!
It’s that time of year again...time for The Leukemia & Lymphoma Society's Light The Night Walk. This year the walk is being held in Rancho Cucamonga at the Quakes’ Stadium, The Epicenter. We’d love it if you could walk with us this year. It starts at 4:30, on Sunday, October 8th, 2006. This will be our 5th Light the Night Walk, and our 3rd without Madi.
As you know, we are participating in the walk in memory of our little Princess Madi who lost her battle with leukemia almost 3 years ago when she was only 2˝-years old. Madi and the other kids like her are such heroes to us! We need your support to continue providing hope for other patients and their families.
To register for the walk, go to http://www.active.com/donate/ltnSanta/PrincessMadi2006 and click on ‘REGISTER TO WALK’, then ‘Join Team’, then look under ‘Search: Find Your Team’ and click under ‘Search by’ and scroll down to ‘Team Name’, then enter ‘Madi Mitchem’ in the ‘Search’ box and click ‘Search’. It will bring up ‘Madi Mitchem Friends and Family’ at the bottom of the page. Just click on ‘Join’. From there you can fill out the registration form and you’re all set to go. If you want to help us raise money for this years’ walk, that would be awesome, but either way, you won’t regret being a part of this incredible event!
If you are unable to join us on October 8th, we’d like to encourage you to donate $10.00, $25.00, or more if possible. It’s amazing what we’ve been able to accomplish in the past couple of years with a lot of people just doing a little bit each. (You’ll get a tee-shirt from the walk if you donate $100.00 or more.) Thanks to all of you, Madi Mitchem’s Friends and Family team has been the NUMBER ONE non-corporate fund raising team for the past two years. We are blessed to have so many friends and family with such big hearts that understand our passion for trying to make a difference for other families who are struggling with this horrible disease. One day we hope to help find a cure!!!
You can either donate online (at the web site above) quickly and securely and you will receive email confirmation of your donation, or, if you prefer to donate by check, please send it made payable to ‘LLS’ to Mike and Marian Mitchem, 5918 Maybrook Circle, Riverside, CA 92506 BY OCTOBER 3rd, 2006. Please include your complete mailing address so we can send you a tax-deductible receipt for your donation. And, please remember, every little bit helps! No matter how small or how large your donation, when we all join together, we make a huge difference!
If you have any questions, please contact us at 951-788-9099 or 951-288-4976.
Thank you in advance for your support, and we really appreciate your generosity!!
Mike and Marian Mitchem
GO HUG YOUR KIDS!!!!!
Friday, February 24, 2006 10:08 PM PST Five years ago, a Princess came to live at our house. We never dreamed that we would be celebrating her birthday without her. Not a day goes by that I don’t think of her. She had her daddy wrapped around her finger from the day she was born, and the intense time that we all spent together during her treatment just made that bond even stronger. She was an amazing little Princess who is still making an impact on this world that she left behind. Losing Madi hasn’t gotten any easier, I’m just getting better at accepting it and dealing with the sadness.
Happy Birthday Princess, I love you the most!
Madi’s Daddy
Thursday, September 22, 2005 11:00 PM PDT
Madi Mitchem's Family and Friends Light The Night Walk is coming again October 8th, 2005.
The Light The Night Walk is The Leukemia & Lymphoma Society's nationwide evening walk to raise awareness and funds to cure leukemia, lymphoma and myeloma, and improve the quality of life of patients and their families.
We are participating in the walk in memory of our sweet 2˝-year-old daughter, Princess Madi, and in memory of another precious little girl we fell in love with, Queen Maddy Bates, who just lost her battle with Leukemia on August 31, 2005. These kids are the real heroes! We need your support to help continue providing hope for patients and their families.
Although research is responsible for increasing survival rates for these diseases, the battle is far from over. Did you know that:
* Every five minutes, someone in this country is diagnosed with a blood cancer. Every ten minutes, someone dies.
* Leukemia is the leading cause of disease-related death among children and young adults under age 20.
We are inviting you to please make a donation to support our participation in the Light The Night Walk. By doing so, we’ll both be helping save lives. You may donate online quickly and securely and you will receive email confirmation of your donation, or, if you prefer to donate by check, please send it made payable to ‘LLS’ and return it before October 5th to:
Mike and Marian Mitchem
5918 Maybrook Circle
Riverside, CA 92506
Please include your complete mailing address so you will receive a tax-deductible receipt. Please remember, every little bit helps. No matter how small or how large your donation, when we all join together, we will make a big difference.
We would also like to invite you to join us at the walk on October 8th at the University of California - Riverside from 4:30 to 7:30 p.m. We would love to have you come and walk with us.
You can register or do your online donation for the walk at http://www.active.com/donate/ltnSanta/PrincessMadi
If you have any questions, please contact us at 951-788-9099 or 951-288-4972.
Thank you in advance for your support, and we really appreciate your generosity!!
Mike and Marian Mitchem
GO HUG YOUR KIDS!!!!!
To view Queen Maddy's web site, go to www.caringbridge.org/ca/queenmaddy
Wednesday, August 31, 2005 10:36 AM PDT Dear friends,
It is with a heavy heart that I am posting this entry...
One of the blessings we received in traveling the journey with our Princess Madi in her fight against leukemia was the special friendships we made with other families that were also fighting to save their children. One of the most special relationships we developed was with the Bates Family...Joe, Richelle, Ethan and Queen Maddy.
The little Queen that we came to love so dearly took her last earthly breath this morning at 7:45 a.m. Eastern time. She was held by her mom and dad when her little soul left this earth, but now she is in the arms of Jesus, and we know we will see her and our little Princess again.
Please keep Joe, Richelle, Ethan and their entire family in your prayers. If you would like to visit their web site, I know they would appreciate your encouraging words. www.caringbridge.org/ca/queenmaddy
Jesus said: “....in this world you will have trouble. But take heart! I have overcome the world.” John 16:33
GO HUG YOUR KIDS!!!!!!!!!!
Madi’s Mommy and Daddy
Thursday, February 24, 2005 1:38 AM PST Hi everybody,
Wow, Madi would have been 4 years old today. It’s interesting how much these little “landmarks” seem to affect us. We miss her so much! We continue to feel fortunate that she was a part of our lives, even if only for 2 ˝ years. We believe we have become better people for having been her parents.
One of the main things that changed in our lives after Madi was diagnosed with Leukemia is the fact that we can no longer live our lives thinking that “bad things” only happen to “other people”. We have become very aware of the many ways that so many families are hit by diseases and loss, and we feel an obligation and a desire to continue fighting to help these other families.
We are coming to you once again, asking for you to open your hearts and your checkbooks to help us support the families on the pediatric transplant unit at Duke University Medical Center. Our family will be flying back to Durham again in May to participate in the Rainbow of Heroes Walk. Many of you gave very generously last year, and all of your support is greatly appreciated. This walk is a fund-raiser for the Duke Pediatric Bone Marrow and Stem Cell Transplant Family Support Program and commemorates and celebrates all of the transplant patients and their families. The purpose of this volunteer-based program is to care, to serve and to lighten the burden of the transplant families through a comprehensive array of resources and services. Some of the ways your money will help these families include: welcome bags, meals, phone cards, parking passes, pagers, grocery store gift cards, art supplies for patient group activities, rent, and the Best Buddies Program. For more details about this program, please visit http://www.cancer.duke.edu/pbmt/support/family.asp
To send a donation in memory of Madison Mitchem, please make your check payable to Duke PBMT-05RH and mail it: c/o Mike and Marian Mitchem, 5918 Maybrook Circle, Riverside, CA 92506. Please send your donations by April 28th, 2005, so we can include you in the totals for this year’s Rainbow of Heroes Walk.
All contributions are tax-deductible. Tax receipts are available upon request.
Anyone contributing $100 or more will receive a commemorative 2005 Rainbow of Heroes t-shirt, which includes the names of all of the children transplanted between April 3, 2004 and March 31, 2005. (“Queen” Maddy Bates’ name will be on this t-shirt. She was transplanted on February 24, 2004–our Madi’s birthday.)
Many of you know that Maddy Bates is currently back at Duke again. She relapsed in December and is being treated by Dr. K once again. Maddy is doing well, but they still have a long way to go before returning to CA. Please take a minute to leave them a message in Maddy’s guestbook at www.caringbridge.org/ca/queenmaddy
Thank you for continuing to check in on us, for the calls, emails and prayers. We can’t tell you enough how much we appreciate it. We know that God is in control in our lives, and we very much look forward to the day when Jesus returns to take us all home with Him and to reunite us with those we love.
Please remember all of the families who are battling for the lives of their children.
Jesus said: “....in this world you will have trouble. But take heart! I have overcome the world.” John 16:33
GO HUG YOUR KIDS!!!!!!!!!!
Madi’s Daddy and Mommy
Thursday, October 28, 2004 Hi everybody–
I’ve been meaning to write this update for quite some time, but just never seem to find the words. Now the timing makes me feel that I NEED to write something, so here goes...
Thursday, October 28th, 2004...one year since we lost our little Princess. Hard to believe. We still find ourselves amazed that the world keeps going along as if nothing has changed. We have often felt that everything should have come to a screeching halt when we lost Madi, but it seems that the only world that stopped was ours.
We all miss Madi terribly, and the tears seem to flow more often now than they did just a few months ago. Guess reality is sinking in. Now we’re just having to learn how to find a new ‘normal.’ Whatever that is. We still have our wonderful memories, and we still feel incredibly blessed to have been Madi’s parents, even if only for 2 ˝ short years. She helped us become better people, more caring, more patient, and less apt to take things for granted.
We are so incredibly blessed to have Mikey to help us maintain our sanity. He keeps us laughing. Just a couple of weeks ago Mikey was telling us how much he really missed Madi. He said that he wished that she didn’t have to die so young. Then he continued by saying, “In fact, I wish noone had to die until they were at least...... (pause) ........40!” It just struck us funny...the ripe old age of 40. Anyway, we’re so glad Mikey is here to keep us laughing.
Matt is doing well in Tennessee. We don’t hear from him too often, but it sounds like he’s having a good time and staying busy working with Jim and Barbara. We got to see him for about an hour on October 14th. He and Jim did a quick turn-around trip out here to California to get the rest of their stuff out of storage. It sounds like he might be out again in November, but they weren’t too sure yet. We miss having him around, but are glad he’s doing well.
We would like to thank all of you who came out to the Light the Night Walks. We so appreciate your support! We haven’t received the final numbers yet from the folks at Light the Night regarding how much our team was able to raise, but we know it was at least $4500, and donations are still coming in. (They keep the books open til the end of October in case any of you are still interested in donating.) If you donated over $25 and have still not received your Light the Night Teddy Bear, please let me know!
*******Important Announcement: You are all invited to the Blood Drive/Birthday Party for “Aunt Carol” on Friday, November 12th. Carol began her chemotherapy Monday for the next round of her treatment for breast cancer. She will be treated at City of Hope in Duarte, and will require many blood and platelet transfusions during her treatment. November 12th is actually Carol’s birthday, so a party has been planned for anyone who would like to join us. Southern California Edison in Rialto is the location, and City of Hope is sending out a team of nurses, etc. to run the blood drive. They are interested in both directed donors (if you are O+), or in donors for replenishment credits. In other words, if you have blood and it’s healthy, please come share! They need at least 50 people to sign up as donors in order to make it worthwhile for City of Hope to conduct the blood drive in Rialto, and we’re over ˝ way there with people who have signed up so far.
Many of you were able to attend the Birthday Party/Blood Drive we had for Madi in February 2003. That was a day full of wonderful memories for us, and we were able to help the blood bank collect over 80 units of blood and sign up 32 new people for the bone marrow registry. We hope you’ll be able to come out in support of a very special person to us, Carol Ratliff. For details or to sign up, please contact “Aunt Linda” at (909) 822-7034 or www.dealyl@wwdb.org. Even if you can’t donate, please feel free to come join us for cake. If you are interested in donating, but you are not available November 12th, please call Linda for alternative options.
Again we want you to know how much we appreciate your prayers and support. (We still need your prayers.)
GO HUG YOUR KIDS!
Marian and Mike Mitchem
Madi’s Mommy and Daddy
Thursday, September 2, 2004 5:30 PM PDT Hi everyone!
Once again, it’s been a couple of months since we’ve updated, but it’s just amazing how time flies. We can’t seem to stop ourselves from remembering the things we were doing just one short year ago...we were so excited as we were packing up the last of our things in North Carolina and getting ready to board a jet on September 3rd, 2003, to bring Madi back to California. I don’t remember very many days more exciting than that one. We were so sure she was completely cured and that she was going to make it.
Now we find it hard to believe she’s already been gone for 10 months. We miss her so much! We recently found a couple of rolls of film that hadn’t been developed, and not knowing what was on them, took them in. It caught me by surprise when I opened them up and found that one of the rolls was taken just shortly before we left North Carolina. There were some really cute pictures of Madi and Mikey. Of course, I was happy to see them, but just stood in the store crying as I looked through them. (A couple of these pictures are in the 'view photos' section.)
On a brighter note, Mikey is doing great...he started first grade last week, and he LOVES school. He is such a social little guy that he thinks school is just one big party, playing with other kids ALL DAY! We just hope it lasts. We haven’t had any arguments regarding going to bed or getting up, and he always wants to be the first one in his class to get to school so he can be first in line as they walk into their classrooms. Everyday he comes home excited and telling us about what new things he’s learned. He did catch us a little off guard on his first day of school. We had the camera out so we could get some pictures of the big event, and when Mikey saw the camera, he said, “Dad, can you take my picture with my little sister?” He then reached over and grabbed one of the poster boards we have that had Madi’s picture on it and carried it into the living room, placed it up against the fireplace, and stood beside it, smiling for his picture. It’s obvious he still misses his baby sister very much, and needless to say, he got both Daddy and I choked up that morning. (There's also a picture of Mikey’s first day of school in the 'view photos' section.)
Matt is going to be moving back to Tennessee next week to work for his mom and step-dad. It’s been fun having him live with us these past few months and we’re really going to miss him. He and Kristin (Chipenz, as Madi called her), his girlfriend, are both going, and we wish them the very best on their new adventure.
We have found that the best way for us to keep from dwelling on the sad things that have happened in our lives is to keep trusting that the Lord has a plan for our lives, and that if we are willing to follow Him, He can take anything and turn it into something wonderful. We have already seen many examples of how Madi’s life has positively impacted so many people, and she continues to touch people, even now. Madi’s picture is being used again this year by the Leukemia & Lymphoma Society on their billboards out in the Palm Springs area. We were able to drive out a couple of weeks ago and get some pictures of a few of them. (The picture above is one of the billboards.)
Another part of our healing has come from staying actively involved in helping where we can with the efforts of organizations like the Leukemia & Lymphoma Society, and Duke University. We are currently putting together a team of walkers who will join us this year as we support the Leukemia & Lymphoma Society’s Light the Night event. We will be walking in Riverside on September 26th, and in Redlands on October 10th. I am sure this will be an emotional time for us...Madi was able to attend this event last year, and at the time we had no idea that she had relapsed.
We would like to encourage you to join us as a walker and help us raise funds for this incredible organization, or if you can’t come and walk with us, please consider sending a donation to LLS. We have a “Princess Madi’s Light the Night Walk” web page you can visit for details on how to donate, and they have made it even easier for us this year, adding the convenience of being able to donate online using a credit card. For details, please visit the web site at http://www.active.com/donations/fundraise_public.cfm?key=princessmadison
We are sending an adorable little Light the Night Teddy Bear to anyone who donates at least $25.00. Anyone raising $100 or more will receive an official Light The Night T-shirt and an illuminated balloon. There are many other prizes including either a DVD player or a digital camera for anyone raising over $2500. Last year our team raised over $6000 with “Dramma Judi” (Madi’s Grandma) as our team captain, and we would love to raise even more this year.
We thank you again for your prayers and support. We know we are truly blessed to have had Madi in our lives, and we continue to feel blessed by the love of so many of you.
We hope to see you soon.
GO HUG YOUR KIDS!!!
Marian, Mike and Mikey
Sunday, June 20, 2004 2:33 AM CDT Hi everyone,
This is Madi’s mom writing. Happy Father’s Day to all of you Dad’s! I know today is bound to be a little tough for Mike. He misses his little Princess so much! The boys (Mike, Matt, Mikey, Papa, and Uncle Gary) are all planning to meet at Denny’s at 6:30 a.m. for breakfast and then they’re heading to a car show for Father’s Day. We’re all meeting up at Papa and Grandma Judi’s later in the day for lunch. Hopefully we’ll all stay so busy today that we won't get too sad.
We just can’t believe it’s coming up on 8 months now that Madi’s been gone. We have been keeping ourselves busy though, and are enjoying spending as much time as possible together as a family. We’ve been to Disneyland quite a few times, spent lots of time at the pool, and the boys have been rebuilding a couple of minibikes together, which they are now having fun riding. Mike and I feel so blessed to have Matt and Mikey, and we definitely appreciate them both more now than I think we ever did before.
We haven’t updated the web site in over 2 months, and especially for those of you who still visit the site to check on us and send us emails or leave messages in the guestbook, we just wanted to let you know that overall, we’re doing really well.
In April we were able to go back to Durham for Duke’s Rainbow of Heroes Walk. We expected it to be a very emotional time, but were rather proud of ourselves that we didn’t ‘lose it’ too many times. We really did quite well until they did the balloon release where hundreds of balloons with the names of kids who have been transplanted at Duke were sent floating into the sky as they played ‘Somewhere Over the Rainbow’. I think just about EVERYBODY lost it then.
It was really good to see so many of the people we’ve met and become close with on this journey. We spent most of our time with Richelle and Joe Bates, little Queen Maddy’s parents. (Mikey and Ethan were almost inseparable...either Mikey stayed the night with Ethan, or Ethan came and stayed with us almost every night we were there.) We were able to stay at Terry and Kathy Clem’s beautiful home again, and even though we didn’t get to see much of them, they still made us feel very welcome! (Thank you again Terry and Kathy!!!)
At the walk it was great to see many of the doctors, nurses and people that took care of Madi while she was at Duke. Dr. K gave us a big hug...it must be tough on her too...she grows to love these kids so much. I know she must love seeing all of the ‘success stories’ come back for this event though. We thoroughly enjoyed seeing the kids who were back celebrating yet another year out of transplant! It was fun seeing Koko and Nate who are both 4 years post-transplant now, and they look awesome!!! “Baby Nolan” is now an adorable, very active, very mobile 2-year old. We just couldn’t get over how much he has grown and improved in so many ways since we were all back at Duke together last July. It was so great to see him and that wonderful smile he has!
We were also able to put faces with some of the names of the people we’ve talked with or followed via caringbridge, but had not had the pleasure of actually meeting. It was especially difficult seeing some of the other families who also lost their kids this year, but at the same time, was a huge comfort to me. Reese Coble’s mom, Shawn, and I exchanged a hug that I think maybe only mom’s who have lost a child can really understand. We got to see Dre’s folks and give them a hug as well.
We briefly got to see Jordon Horton’s family, Isaiah Bingham’s family, Alex Schwab’s family, Christina Lu’s family, Khalita, and Dora the Explorer. Our very favorite nurse, ‘Nursie Lori’, was in California during most of our stay in NC, but we did get to spend a little time with her before heading back home. (Thanks Lori and Richelle for the fun little ‘girl's day out’ time we had. I sure miss both of you!)
One evening we enjoyed a wonderful dinner together with a group of other transplant families at the Cattleman’s Steakhouse. Sam and Nancy Ramsey and their kids were there (Baby Nolan’s family), Peggy and Mike (Jeremiah’s family), Richard, Allison and Koko Sutter, Ingrid and Nate Parry, Joe, Richelle and Ethan Bates (Queen Maddy’s family), along with many of our best buddies and friends. (Thanks for coming Best Buddy Michelle!) It was really good spending time with so many people who understand exactly where we’ve been and what this last year or two have been like.
Mikey had a great time hanging out at the walk with Cooper (Nolan’s brother) and Ethan (Maddy’s brother.) He keeps asking when we’re going to go back to NC so he can see his friends. Fortunately, Queen Maddy, Ethan and their folks are supposed to be heading back here to California in the next week or so. We can’t wait to see them!!!! (If you have a chance to visit their web site, they just posted some new pictures of their little Maddy, and it’s unbelievable how much she looks like our Madi. They say that all transplant kids look alike, but this is just kinda bazaar.) http://www.caringbridge.org/ca/queenmaddy
Overall, the Rainbow Walk was a huge success, raising over $90,000 for the pediatric transplant family support program. We’d like to say another thank you to all of you who sent in donations supporting this event in Madi’s honor.
I’d like to wish my wonderful husband, Mike, a happy father’s day. Thanks for being the very best Daddy anyone could ever wish for! Our kids are blessed to have you!
GO HUG YOUR KIDS!!!
Love,
Marian
(Madi’s Mommy)
Saturday, April 9, 2004 11:34 PM PDT I added some different pictures to the photo page.....some of our favorites!
Hello to all,
It's hard to believe that it's been a year ago today that we got on a plane and headed for Duke and the hope of a cure for our Little Princess. So much has happened in this short year. Many tears, but also many wonderful times. We shared special time as a family in Durham and made many great frienships too. Marian, Mikey, and I will be headed for Duke again this month to participate in the Rainbow Walk of Heros in honor of Madi. I know that emotions will be high, yet we look forward to reuniting with those in Durham, North Carolina who shared in our journey with Madi. We will continue to support Duke and the PBMT Family Support Program. They made such an impact on our lives!
Below is a copy of the letter that Marian and I sent out inviting others to join us in supporting the Rainbow Walk of Heros in any way they could.
Thank you for all of your thoughts and prayers!!
Love you all,
Madi's Daddy
GO HUG YOUR KIDS!!!!!!!!!!!!!!
Rainbow of Heroes Walk
Saturday, May 1, 2004
Dear Friends,
We would like to say a huge thank you for following along with us these past couple of years as our little Princess Madi fought her battle with Leukemia. Madi taught us many things during the short 2 ˝ years we were blessed to have her as part of our family, not the least of which is how to smile more, how to hug more, and how to find something good in any situation.
A very positive outcome we have found during this journey are the many new friends we have had the opportunity to make, that we know we would never have made any other way. Some of these friends have also lost their children this past year and it just breaks our hearts. Many others are still fighting the good fight and doing everything they can to help their children beat this awful disease.
We will be going to Durham, NC, in a couple of weeks and will be participating again in this year’s Rainbow of Heroes Walk. This walk is a fund-raiser for the Duke Pediatric Bone Marrow and Stem Cell Transplant (PBMT) Family Support Program and commemorates and celebrates all of the transplant patients and their families. At the end of the walk, there is a giant balloon release, creating a rainbow-colored skyline in honor of all of these brave heroes.
The purpose of the volunteer-based PBMT Family Support Program is to care, to serve and to lighten the burden of the transplant families through a comprehensive array of resources and services. For more details about this program, please visit http://www.cancer.duke.edu/PBMT/support
This program is totally self-supporting and receives no funds from Duke University Medical Center. Your contributions make a tremendous difference! Any amount is helpful...$10, $25, $100, $1000 or more. Anyone contributing $75 or more will receive a commemorative 2004 Rainbow of Heroes t-shirt which includes the names of all of the children transplanted at Duke between April 1, 2003 and March 31, 2004. (Princess Madi’s name will be included on this year’s t-shirts.)
You can help today with your tax-deductible donation made in memory of Madison Mitchem. Please make your check payable to Duke PBMT-04RH.
Thank you so much for your help! God bless!
Sincerely,
Mike, Marian, Matt and Mikey Mitchem
http://www.caringbridge.org/nc/princessmadison
5918 Maybrook Circle, Riverside, CA 92506
(909) 788-9099
Tuesday, February 24, 2004 4:20 AM PST Dear Family and Friends!
It’s so hard to believe that it’s been almost 4 months since we lost our little Princess. We won’t say that these past few months have been easy, but we will say that we are so grateful to have such an awesome God. Without our belief that we will be together again, we will see and hold our little Princess Madi again, I don’t know how we would get through. We treasure the memories we have of all the special times we were able to share with her. (We have changed the pictures, take a look.)
Mikey has been such a blessing to us...helping us to laugh and smile, reminding us that we still have much to live for. His 6th Birthday was on February 16th. The last 2 years he was able to celebrate his birthday with his little sister (Madi was born 8 days after Mikey’s 3rd birthday) so this year was very different. We still managed to have a few of his friends over for some fun, games, pizza and cake, and he had a really good time.
We are excited that Matthew, Mikey’s BIG 20-year-old brother, has moved in with us for awhile. It’s been fun getting to see more of him and Kristin “Chipenz”, his girlfriend. We have a good time just hanging out with them, and they seem to have a good time hanging out with us too.
Today, February 24th, would have been Madison’s 3rd birthday. We felt that this might be an appropriate time to send out an update, and also a fitting time to once again ask for your support. We have a strong desire to continue helping Duke University, specifically the Pediatric Bone Marrow and Stem Cell Transplant (PBMT) Family Support Program.
We are flying back to Duke in April to participate again in this year’s Rainbow of Heroes Walk on May 1st. Rainbow of Heroes is a walk commemorating and celebrating all Duke Pediatric Bone Marrow and Stem Cell Transplant (PBMT) patients and their families. Balloons with transplanted children’s names on them are carried in honor or memory of children who have been through or are currently in the program. As a finale to the walk, there is a giant balloon release, creating a rainbow-colored skyline in honor of all these brave heroes. This walk not only honors the transplant patients, but raises money for the PBMT Family Support Program. Some of the services they provide include the Best Buddy Volunteer Program (our Best Buddy Michelle was awesome!), CellMates (a kids support group), ArtMates (craft time for the kids and sometimes the parents too), Crisis Team, Salon Day (where a professional hair stylist comes to the Unit and does hair cuts, coloring, and a little pampering), Community Meals (when they provide food for the families a couple of times a week), Pagers, Phone Cards, Parking and Meal Passes, and Community Counts Newsletter. They also coordinate with a few of the local churches to bring food to the unit a few times a month. These services are such a huge support for the families, and they are all provided at no cost to the families. The Family Support Program is totally self-supporting and receives no funds from Duke University Medical Center. Your contributions make a huge difference! Most of the program’s funding is raised through this walk, so we ask that you please consider making a donation in Madi’s honor. Please make your checks payable to Duke PBMT-04RH and include Madison Mitchem’s name in the memo section. Donations can be sent directly to Duke, Attn: Jane Schroeder, PBMT Family Support Program, DUMC 3350, Durham, NC 27710, or to us at 5918 Maybrook Circle, Riverside, CA 92506. ALL CONTRIBUTIONS ARE TAX-DEDUCTIBLE.
We have some close friends from here in Southern California that are at Duke RIGHT NOW getting a transplant for their daughter, Madison Bates. Her transplant date is today, February 24th, and her web site is www.caringbridge.org/ca/queenmaddy or www.miracleformaddy.com. I’m sure they would love to have you visit their web site and leave a few words of encouragement. The pictures of Little Maddy and her brother, Ethan, are adorable! (Ethan is going to be Maddy’s bone marrow donor.) I know they would appreciate your prayers.
We would also like to ask for your prayers for Carol Ratliff (Mikey and Madi’s Aunt Carol) who was just diagnosed this week with Inflammatory Breast Cancer. Carol has been such a phenomenal help to us these past couple of years and has been instrumental in allowing Aunt Linda to be available to help us take care of Madi and Mikey. She’s got a long road ahead of her and we know she could use your prayers.
We would like to thank all of you for your continued support through these past few months. Your cards, gifts, phone calls, and prayers mean so much to us. We always enjoy hearing from you and hope you’ll either call, send us an email, or leave us a message in Madi’s guestbook.
If you are interested in helping us raise money for the Family Support Program, you can get additional information regarding the Rainbow of Heroes Walk, by visiting the website: www.cancer.duke.edu/PBMT/fundraising/rainbow.asp. If you raise $75 or more, you will receive a commemorative 2004 Rainbow of Heroes t-shirt, which includes the names of all of the children transplanted between April 1, 2003 and March 31, 2004.
GO HUG YOUR KIDS!!!
Love,
Madi’s Family
Mike, Marian, Matt and Mikey Mitchem
Saturday, January 17, 2004 3:44 AM CST January 16, 2004
Hi everyone!
It’s been over a month now since I’ve updated this site. Sorry, it’s hard to know just what to say. We’ve been putting our lives back together one day at a time. God has blessed us with many friends and family to occupy our time and help us along this new journey.
There is a large hole in our lives now and I guess there always will be. I don’t think I’ll ever get over this, and I’m not sure that I want to. But we will make it through it and the memories of our little princess will grow more and more precious as time marches on.
It’s getting late, but I didn’t want another day to slip by without letting you all know how much we appreciate your thoughts and prayers.....and your messages. Thank you for raising us up in prayer and for all of the words of encouragement. It has kept us going one day at a time!
Please remember all of the families who are battling for the lives of their children.
Jesus said: “....in this world you will have trouble. But take heart! I have overcome the world.”
John 16:33
GO HUG YOUR KIDS!!!!!!!!!!
Madi’s Daddy
Saturday, December 12, 2003 11:14 AM PST December 12, 2003
Happy Holidays!
Hi everyone! It seems strange to be saying ‘happy’ anything, but life does go on and we do wish all of you the very best this holiday season!
We are slowly working our way back into the “normal” things of life. I have started back to work, almost part time. That’s one of the benefits of being self employed! I can come and go as I please.
We took Mikey to Disneyland with Melissa Miramontes and Samantha and little Stevie. It was a lot of fun, and it was good to share some happy time with them.
We finished decorating the house for Christmas and it looks great! We put lights all over the bushes and the tree out front, and on the trim of the house. Mikey enjoyed helping, and was very excited with the results.
We still have our sad times. Yet it seems as though we can think of Madi and smile more often. We have even had some good laughs at times remembering silly things that she did. She was such a blessing! I thank God for the short time that He trusted us with her care! As a matter of fact, Mikey has been including in his prayers....” thank you for trying to keep Madi alive.” It’s good to know that he knows that God was there with us, helping us with Madi’s care. Mikey is a great kid. He seems to know when we need a kiss or a hug and we get them a lot!
Madi’s big brother Matt and I have grown closer since our return from Duke. He and “Chipenz” have spent lots of time with us and it has really helped. I’m very proud of Matt. He has a big heart.
I come to this web site every morning when I get up and every night before I go to bed. ItÂ’s amazing to me how reading messages of encouragement from friends, family and even complete strangers can have such a tremendous impact on how I feel...to start the day...or to end the day. Thank you for all of the messages. They really make a difference.
Marian and I continue to move forward one step at a time, knowing that God is there with us. Our faith has gotten us this far and we know that we will work through this in time. We know we will see Madi again when Jesus returns to take us all home!
Some of you remember us talking about the other Maddy at Kaiser Fontana, Madison Bates. Last week we received the sad news that MaddyÂ’s Leukemia is back. She has
AML and her family is now researching transplant options. Like Mikey and our Madi, Maddy and her big brother, Ethan, are also three years apart. The four kids had fun playing together. Please keep them in your prayers. They have some adorable new Christmas pictures of Maddy on her web site so please stop by and offer them some words of encouragement. www.caringbridge.org/ca/queenmaddy
WeÂ’d also like to ask that you continue to keep the Bennett Family and the Miramontes Family in your prayers. You can visit their web sites and offer them some encouragement as well.
www.caringbridge.org/ca/bennettboys
www.caringbridge.org/sc/mannymiramontes
MERRY CHRISTMAS EVERYONE!!!
Remember the reason for the season!!!
GO HUG YOUR KIDS!!!!
And hug ‘em again for Madi’s Daddy!!
Thank you for your continued support and donations “In Memory of Madison Mitchem” to:
The Leukemia and Lymphoma Society
2333 North Broadway Suite 320
Santa Ana, CA 92706
(714) 881-0610
or
Duke Pediatric Bone Marrow and Stem Cell Transplant Unit
(Make Checks payable to Duke PBMT-03RH)
Attn: Jane Schroeder, Director, PBMT Family Support Program
Duke University Medical Center 3350
Durham, NC 27710
(919) 668-1128
Wednesday, November 26, 2003 10:50 AM PST November 26, 2003
Hello friends!
I know that a lot of you have been checking in on this site to see how we are getting by. I know this because of the growing number on the counter at the bottom of the home page. I know that it may be hard to leave a message, but even if it is just to say you stopped by, it would be good to see. We have grown so used to coming here for words of encouragement that we miss your kind words. Thanks so much for your moral support.
They say that “time heals everything” and I guess in time it will. We’re taking it a day at a time and we’re doing pretty good. This first year without Madi, with all of it’s ‘firsts’, I’m sure will be the most difficult. Oddly it begins with Thanksgiving. We have LOTS for which to be thankful...the promise that some day soon we will see Madi again, that God is helping us all through this confusing time, the support of family and friends like you. The list is unending. We have been blessed beyond measure!!
We took a trip to visit friends at Lake Havasu for a few days. It was good to get away with the boys and “Chipenz”, Matt’s girlfriend. Her name is really Kristin, but Madi called her Chipenz and it seems to have stuck. We took Mikey to Disneyland and California Adventure with his best buddy, Tommy and his mom. The boys had a blast! It was a good day. Marian and I did O.K. ‘till we walked past the carousel. It was Madi’s favorite and she talked often of how the horsey went up and down, up and down. She had ridden several carousels and loved them all. We miss her terribly, but, thank God, we have SO MANY HAPPY memories of our Little Princess!
We started decorating for Christmas and it’s fun to see the excitement in Mikey’s eyes! I don’t know what we would do without “100 mph Mikey”. He has greatly helped us through this time. The other day on the way home from Havasu, Mikey said, “It’s too bad Madi didn’t last ‘till Christmas, she would have had a lot of fun!” Mikey misses his sister very much, yet he seems to be adjusting to her loss. He is always there with a hug and a kiss, out of the blue.
Our dear friends, Lloyd and Joan McDaniel, just found out that their granddaughter, Nicole, has Acute Lymphoblastic Leukemia (same thing Madi had.) She is 15 years old and is being treated at Children’s Hospital in San Diego. She is one more reason why we will never stop fighting to find a cure!!!
Keep all of those who are fighting for their child’s life in your thoughts and prayers. We have walked that road and can assure you that your prayers make a tremendous difference.
Please continue to reach out to the families in the Caring Bridge system! When our children are sick, and we can’t sleep, it is so comforting to log on to our little one’s site and read the entries from people like you. A few words of encouragement can make a tremendous impact on a parent who may be struggling in the late hours of the day!
Remember Tommy Bennett's family in your prayers. Tommy passed away on Tuesday, November 25, 2003. He was a real fighter. He learned that from his parents, John and Alicia. The Bennetts are two of the strongest parents I've ever met! Please visit their site. They could use your encouragement. Tommy has an older brother and sister, Hunter and Ciara, who are still battling with the same disease, Sanfilippo Syndrome. www.caringbridge.org/ca/bennettboys
Many of you know that Manny Miramontes, the 7 year old little boy that was transplanted the day after Madi back at Duke, passed away on Friday November 7, 2003. He was a strong little boy and he is deeply missed. www.caringbridge.org/sc/mannymiramontes His parents, Stephen and Melissa, and his sister and brother, Samantha and Stevie, have become close friends and we appreciate you keeping them in your prayers as well.
Madi’s big brother, Matt, put together a beautiful slide show for the service and a few people have requested a copy of it. It is a VCD that can be viewed on your television or computer. A copy will be sent to anyone who sends a donation to either The Leukemia and Lymphoma Society or the Duke PBMT. You can send your check either to our home at 5918 Maybrook Circle, Riverside, CA 92506 or to one of the addresses below, and send your request for the VCD directly to us. If you have already made a donation and would like to receive a copy of the VCD, please let us know.
Thank you to so many of you who have already sent donations “In Memory of Madison Mitchem” to:
The Leukemia and Lymphoma Society
2333 North Broadway Suite 320
Santa Ana, CA 92706
(714) 881-0610
or
Duke Pediatric Bone Marrow and Stem Cell Transplant Unit
(Make Checks payable to Duke PBMT-03RH)
Attn: Jane Schroeder, Director, PBMT Family Support Program
Duke University Medical Center 3350
Durham, NC 27710
(919) 668-1128
Thanks for remembering us in your prayers. Happy Thanksgiving to you all.
Monday, November 3, 2003 8:02 PM CST November 3, 2003
Hello again,
Madi’s service was yesterday. What a beautiful celebration it was! The church was so full. There were so many of you there that I know that I missed a chance to speak to each of you. Please know that our family and I are so thankful for all of the support we have received from all of you. We have been blessed not only with the time we had with our Little Princess, but with the love and support of friends from near and far. Some whom we have never met except for their entries on this web site. Thank you all from the bottom of my heart! You have shared our joy and you have lifted us up these last fleeting days.
Please continue to reach out to the families in the Caring Bridge system! When our children are sick, and we can’t sleep, it is so comforting to log on to our little one’s site and read the entries from people like you. A few words of encouragement can make a tremendous impact on a parent who may be struggling in the late hours of the day!
Madi’s big brother, Matt, put together a beautiful slide show for the service and a few people have requested a copy of it. It is a DVD that can be viewed on your television or computer. A copy will be sent to anyone who sends us a donation made payable to either The Leukemia and Lymphoma Society or the Duke PBMT along with a note requesting a copy of the DVD. Please send the donation and request to us at 5918 Maybrook Circle, Riverside, CA 92506. If you have already made a donation and would like to receive a copy of the DVD, please let us know.
Madi’s Dramma Judi wrote the story of Madi’s life from her brother Mikey’s perspective. Papa read it at Madi’s service and I want to share it with you. It’s entitled.........
A PRINCESS CAME TO LIVE AT OUR HOUSE
On February 24th, 2001, 8 days after my 3rd Birthday, a wonderful thing happened! My baby sister, Madison Renee arrived! The first time I saw her Mommy and Daddy let me kiss her little pink cheeks and told me we had a little princess. Boy, were they ever right! I got to show her off to everyone at the hospital. Without a doubt, she was a beauty. Everyone said so.
Then the day came for us to take her home. Mommy and Daddy had prepared a special place for Madi to sleep in the cradle that Papa made for Uncle Gary when he was born, the same cradle I slept in when I was a baby. Only this time it was decorated for a princess to sleep in. One of the first things we did when she got home was to take turns sitting in the recliner with Daddy and Mommy. What fun that was! Mommy and Daddy took a million pictures! It was sure great to have our little princess and Mommy home.
Having a little sister takes a while to get used to, but I managed. Mommy and Daddy made it easy, ‘cause they loved us both so much. I got to help take care of our princess by bringing things to Mommy when they were out of reach. This made me feel special, too. After all, I was now a BIG brother.
Then I came into the house one day and found Daddy painting pictures on the walls in the bedroom that he was getting ready for Madi. Boy was he in trouble! I told him that Mommy was really going to be mad when she saw what he was doing, cause you weren’t supposed to write on the walls! Well, it turned out that Daddy was painting a castle for our little princess to sleep in and Mommy was okay with it. She reminded me that Daddy had painted the clouds on my bedroom ceiling for me when I was little and now it was Madi’s turn to have a special room. It turned out just great and suited our little princess to a “T.”
Then Madi got sick. None of us knew how really sick she was until she ended up in the hospital. She had to have an operation to help her get better. Then she got to come home again. We were all so glad to have her back. That weekend we went to church and Madi was dedicated to God. Our whole family came and Aunt Linda sang a song especially for Madi. Then we all went out to lunch and celebrated. It was a good day!
Our house was a happy place with all of us home together. Then Madi got sick again. Mommy and Daddy told me that she was very sick and had something called Leukemia. They told me that they would be spending time at the hospital with Madi until she could come home. That was a hard time for all of us. I had lots of sleepovers at Aunt Linda’s, Matt’s, Grandma Flora Maye’s, Tommy’s or Grandma Judi and Papa’s house. Everyone made sure that I had a good time and didn’t miss Mommy and Daddy too much. Then Madi got to come home again. She was still pretty sick, but at least she was home with us, except for when she had to go the hospital to get medicine. I spent a lot of time playing with Madi, making silly faces and noises to make her laugh and giving her lots of hugs and kisses. That’s how a good big brother helps out.
Everybody was praying that Madi would get well and she was soon in what Mommy called “remission.” That meant that the medicine was working and we all thanked Jesus for helping our little princess feel better. Madi and I had some great times singing and dancing to The Wiggles. Hide and seek was one of our favorite games. We were both so happy! I couldn’t give her enough kisses and hugs!
Then the medicine quit working and Madi’s blood got sick again. Mommy and Daddy decided to take her to Duke University in North Carolina to get help, cause there was a doctor there who had really done some good things with the type of illness Madi had. We had to pack all of our stuff and put it in storage and then Mommy and Daddy left with Madison. I stayed with Aunt Linda for a few days and then went to Grandma Judi and Papa’s and even Tommy’s house for sleepovers again. It was fun, but I sure missed my family!
After about a month, Aunt Linda took me on a big plane to North Carolina. Grandma Judi and Papa taught me a song called, “Nothing Could be Finer than to be in Carolina” and I sang it to everyone when we got there. It was really true! I was so glad to see Mommy, Daddy and Madi!
Madison had what they called a stem cell transplant at Duke University. She spent a lot of time at the hospital. All of her “nursies” and doctors loved her because she’s so cute and was such a good little patient. She never complained about anything they did to her and made their job much easier. She made everyone laugh when she played her guitar and danced to her Wiggles videos. I don’t think Madi really knew just how sick she was. She just thought everybody spent most of their time at the hospital and she made sure she always had on shoes and hats that matched her outfits when she went to see the nursies. She was a very fashionable little princess! Mommy and Daddy helped, too, by giving Madi her medicines at home between trips to the hospital. On good days, we would sometimes get to visit friends or go out for lunch or dinner. Sometimes Daddy or Aunt Linda would sneak me out of the apartment to take me swimming in the BIG pool while Madi played in her little pool on the patio. I even learned how to swim all the way across the pool without any floaties or kickboards or anything. A few times Madi got to go to the BIG pool with us and Daddy would carry her so she wouldn’t get her tubies wet. We always had lots of fun!
After a long time, the doctor told us that the transplant had finally done what it was supposed to do and we could all go back to California. The doctor said Madi had 100 percent donor cells and that was a good thing! We were so happy to get back home. I got to sing the other song Papa and Grandma Judi taught me, California, Here I Come. Lots of people came to meet us at the airport when we landed and there were hugs and kisses all around. Big brother, Matt, was there and it was so good to see him after such a long time. Even my friend Tommy came!
We moved into our new house in Riverside soon after we got back to California. Matt and his friend, Kristen, and Papa and Grandma Judi came and helped Daddy bring our things out of storage. The house has a big back yard and Madi and I had a great time riding our bicycles and my quad and Madi’s Jeep around the yard. My brother, Matt, even helped me learn to ride my bicycle without training wheels. It was nice that Madi didn’t have to keep going to the hospital all the time. Matt came to see us a lot, too. We got to go to Disneyland and Knott’s Berry Farm and Madi and I laughed and laughed when we rode the rides.
We got to go to Papa and Grandma Judi’s house for dinner a couple of weeks ago and Madi kept feeding cheese to the ants on the sidewalk in their backyard. Only a princess would think of that! We had a good time that day, playing in the toy box and swinging on the swing. She and Aunt Wendy even got to play tea party with Grandma Judi’s teacups while I played checkers with Papa.
A few days later, Papa and Grandma Judi came to our house in Papa’s cool red hotrod. He took Madi, Daddy and me for a ride around our neighborhood. Madi thought it was great fun. She got to sit on Papa’s lap in front of the steering wheel for a picture.
We have so many good memories of the times we spent with Madison. We thank Jesus every day for all of the miracles He gave us this last two and half years and for Madi’s doctors and nurses, and for her friends and family who have prayed for Madison and our family. Grandma Judi said that Jesus loaned Madison to us for a little while. She was a special gift that we will always remember and cherish. During her short time with us she taught us to laugh more, to love more, to hug more and to believe in miracles and she brought us all closer to Jesus and to each other. That was her job and she did it good! I really miss Madison…the little princess who came to live at our house.
Madi touched so many peoples’ lives in such a short time. We will continue to fight this terrible disease that took her from us by supporting the Leukemia and Lymphoma Society and the Duke Pediatric Bone Marrow and Stem Cell Transplant Unit, and maybe someday they will find a cure and no more families will have to travel this road.
Thank you all for your love and support. I will be forever grateful.
Madi’s Daddy
KEEP HUGGING YOUR KIDS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
-------------------------------------------------------------------------------------
Keep all of the families who are fighting for their child’s life in your thoughts and prayers. We have walked that road and can assure you that your prayers make a tremendous difference.
We still believe in miracles! We witnessed them every day as we made this journey with our little princess. Don’t loose faith! God is still in control and we already know who wins in the end!! The challenge is to REMEMBER that when things seem to get out of control!
We would appreciate it if you would send a donation in memory of Madison Mitchem to either:
The Leukemia and Lymphoma Society
2333 North Broadway Suite 320
Santa Ana, CA 92706
(714) 881-0610
or
Duke Pediatric Bone Marrow and Stem Cell Transplant Unit
(Make Checks payable to Duke PBMT-03RH)
Attn: Jane Schroeder, Director, PBMT Family Support Program
Duke University Medical Center 3350
Durham, NC 27710
(919) 668-1128
Please include Madison Mitchem’s name and her transplant date of 4/30/03.
Remember Tommy Bennett's family in your prayers. Tommy passed away on Tuesday November 25, 2003. Tommy was a fighter. He learned that from his parents. John and Alicia Bennett are two of the strongest parents I've ever met!
www.caringbridge.org/ca/bennettboys
Please keep Manny's family in your prayers. Manny passed away on Friday November 7, 2003. He was a strong little boy and he is deeply missed. www.caringbridge.org/sc/mannymiramontes
Wednesday, October 29, 2003 2:09 PM PST Wednesday, Oct. 29, 2003
Hello everyone,
For the last three days Madi has not wanted to eat anything. She also has had trouble keeping down her medicines. Because we could see the tumors on her cheek continue to grow, we knew that meant that the tumor in her little brain was also growing. She slept most of the time, occasionally waking up to ask for apple juice or to say “I love you” to Mikey or smile and “arf” at her Aunties. Most importantly, she was with those who love her and whom she loved.
We all took turns holding her. She has always been a snuggle bug. She would snuggle right into your neck and reach up and play with your hair.
Yesterday afternoon, Dr. Yeo came to see Madi and wrote prescriptions for her IV pain and anti-seizure medicine. Shortly after the doctor left, Madi’s breathing started to change. We paged Dr. Yeo and he came back. Madi was breathing better, but the tumor was taking it’s toll and Madi little body was beginning to slow down. We called our families and they all came to be with us. We shared stories of happy times with the little princess and took turns holding her, giving her smooches, telling her how much we loved her and how proud of her we were. At about 9:00 p.m. Madi’s breaths were becoming shorter and shorter. Marian and I took her to our room to hold her close and Papa and Dramma Judi came to hold us too. Papa said a prayer for Madi, all of her family, and all of those who have come to love our little princess. He thanked God for time we shared with our princess and for all of the lives that she has touched during her battle. We sat on the bed and took turns holding her as she fell deeper and deeper asleep. Papa whispered that he would see her when Jesus comes again, he handed her to Mommy and as she and I held her, our precious princess went to sleep to wait for Jesus’ second coming.
Madi is finally free from the terrible disease that she has been fighting since she was five months old. No more tubies, no more yucky medicines, no more masks, no more tumors, no more visits to the hospital. She was such a fighter! I am so proud of her! I am so thankful that God trusted me with her little life. Madi has brought our family closer together than ever before.
I know that the days ahead will be hard, but God has gotten us this far and I know that with His loving hand, the happy memories of such a sweet little girl, and the love and support of our friends and family, Madi’s wonderful Mommy, Mikey, Matthew and I will get through this and become stronger for it. Madi’s big brothers share their little sister’s strength and they are helping us get through this more than they may ever know.
God bless all of you who continually keep us in your thoughts and prayers. You are a constant source of strength and encouragement.
Madison Renee is at rest, waiting for the day that Jesus returns to take us all home with Him. I look forward with great anticipation for that day!! Hold on to your faith!
Keep all of the families who are fighting for their child’s life in your thoughts and prayers. We have walked that road and can assure you that your prayers make a tremendous difference.
We still believe in miracles! We witnessed them every day as we made this journey with our little princess. Don’t loose faith! God is still in control and we already know who wins in the end!! The challenge is to REMEMBER that when things seem to get out of control!
We are having services for Madison at 3:00 p.m. on Sunday, November 2nd.
Corona SDA Church
2550 South Main St.
Corona, CA 92882
In lieu of flowers, we would appreciate it if you would send a donation in memory of Madison Mitchem to either:
The Leukemia and Lymphoma Society
2333 North Broadway Suite 320
Santa Ana, CA 92706
(714) 881-0610
or
Duke Pediatric Bone Marrow and Stem Cell Transplant Unit
(Make Checks payable to Duke PBMT-03RH)
Attn: Jane Schroeder, Director, PBMT Family Support Program
Duke University Medical Center 3350
Durham, NC 27710
(919) 668-1128
Please include Madison Mitchem’s name and her transplant date of 4/30/03.
GO HUG YOUR KIDS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Madi’s Daddy
Please keep Manny and his family in your prayers. They have moved back here to California and now Manny is once again in PICU with complications. www.caringbridge.org/sc/mannymiramontes
Please keep our friend David St Pierre and his father in your thoughts and prayers. They are both fighting colon cancer. David's father was recently diagnosed with the same disease for which he is currently being treated. David's treatment is going well, and Dad is being scheduled for surgery in the near future.
Monday, October 27, 2003 11:59 PM PST Monday, Oct. 27, 2003
Day Transplant 180 / Day Stem Cell Boost 95
Hello friends and family,
Sorry it’s been so long getting this update posted.
On Friday, the 24th, Marian and I took Madi and Mikey to Knott’s Berry Farm. Big brother Matt and his girlfriend Kristin (also known to Madi as “Chippin”) were there too! We all had a wonderful day! The kids went on lots of rides and Madi really enjoyed Camp Snoopy and the Plane ride, the Carousel, and the Train! On the way home we stopped at Papa and Dramma Judi’s to visit. As Mikey and Madi said, “It was a good day!”
Since that day Madi’s condition has been deteriorating at a scary rate, and because of the tumor on her brain, she can no longer walk. She has realized this and tells me “can’t walk” whenever I pick her up. The last couple of days she has had trouble keeping her meds down. She starts to cough and then up come the meds she has just taken. The hospice doctor came by again today and after seeing Madi and talking with us about her difficulty in keeping down all of the meds, he thinks we should begin IV meds as soon as she can no longer keep the oral meds down at all. We now have IV morphine and IV Ativan to give her as soon as necessary. The tumor on her cheek and chin continue to grow unbelievably fast. Her teeth on the right side of her mouth are displaced and nearly covered by the swelling gums around them and the roof of her mouth has also become effected by the growing mass. Thank God for the pain meds and the anti-seizure meds that are keeping her comfortable during all of this.
I apologize for all of the graphic detail, but this is all happening so fast that I feel the need to let you know. It all seems so unreal. Less than two weeks ago we were at Disneyland and Madi was laughing and playing. Now she sleeps most of the day and has to be given medication to control her seizures and pain just to be comfortable. I lay awake at night watching her sleep. I have no idea how anyone without faith in God can deal with such things. Our faith has been what has carried us this far and I know that we will make it through this chapter of Madi’s life.
We still pray for the miracle that will save our little princess, but if it is not to be, we will still trust Him. We have had over six months of time as a family that would NEVER have happened if we had not been lead to Duke. Too many things just fell into place for it to have been a coincidence. There had to be a reason. I believe that some day, God will take Marian and me aside and show us why Madi was allowed to go through this. Until then I will cling to my belief that God is in control and that He will continue to see us through all of life’s frightening times.
Thank you all for your thoughts, prayers, and for the love that we share for our little princess.
GO HUG YOUR KIDS!!!!!!!!!!!!!!!
Madi’s Daddy
Please keep Manny in your prayers. He and his family have moved here to California and now Manny is back in PICU with complications. www.caringbridge.org/sc/mannymiramontes
Thank you to the giver of the generous anonymous gift that we received in the mail. You have helped to relieve the financial pressure of staying home with the family during these stressful times. Some day I hope to pay it forward.
Thursday, October 23, 2003 3:04 AM CDT Wednesday, Oct. 22, 2003
Day Transplant + 175 / Day Stem Cell Boost +92
Hello everyone,
The days seem to get blended together. For the longest time I haven’t known what day it is without looking at a calender. Now we are living our lives by the hour and enjoying every moment that we have with our little princess.
We talked with a Radiation Oncologist from Kaiser Sunset this week. He asked about Madi’s quality of life right now. Did she have complaints about pain? Was she still active and happy? And of course she is. She has definitely slowed down, but she has an indomitable spirit. She has found that she may not be able to walk by herself, but she can still crawl! She will not be stopped! We asked him what the treatments would be like, how long they would last, and what the predicted outcome would be. He said that every day for a week they would have to sedate her and put her in a room all by herself where they would radiate her entire brain. The tumor would shrink, the treatments would end, and two to three weeks later, as she recovers from the nausea, vomiting, and diarrhea, the tumor would be returning. Not a very pretty picture, but nothing about this disease has been. The doctor said he didn’t think that he could do it to his little girl. Not when she could be made comfortable with medication. The ugly truth is that Madi has an extremely aggressive disease and we are not going to be able to stop this thing that is growing inside of her.
We met with Dr. Yo and Nurse Essie Binger from the Hospice Program today. They came by with Dr. Horvath and Nurse Janice to explain the Hospice Program to us and to get Madi started on some new pain management medicines. What a blessing! Madi is feeling so much better! The meds are making her kinda sleepy today, but that will subside as we make adjustments and as she gets used to the new meds. The important thing is that the princess is comfortable and happy! She dozed on and off this afternoon as we discussed things with the nurse and watched Jungle Book II 2-3 times!
We had a nice visit from Pastor Parsons and his wife Leslie this evening. They brought love and hugs from our church family in Murrieta Springs. Mikey went for a sleep-over at his buddy Tommy’s house tonight and Mara, Tommy’s mommy, brought over dinner and desert for Marian and I.
Today is Madi’s biggest brother Matt’s 20th birthday. He and Kristin, his girlfriend, came over and had lunch with us before the doctors arrived. Madi and Mikey think he is the greatest and so do Marian and I!! HAPPY BIRTHDAY MATT!!! We all love you the most!
Well, tomorrow is another day. I continue to pray for a miracle for my little princess, that she will be healed. That may not be part of His plan, yet even so, I will continue to trust in Him as I always have as we continue on this journey with Madison. I know that He is there and that He knows how I feel. He lost His innocent child once too.
Thank you for all of your continued thoughts and prayers. They help us through these times.
GO HUG YOUR KIDS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Madi’s Daddy
Monday, October 20, 2003 3:24 AM CDT Sunday, Oct. 19, 2003
Day Transplant + 172 / Day Stem Cell Boost +89
Whoever said that this was like a roller-coaster was wrong. I like roller-coasters. This is becoming more like trying to walk on ice. Slipping and then gaining your footing and then falling on your face.
Thursday at Disneyland was the best time we’ve had in a long, long, time. The smiles and laughter from Madi and Mikey are burned into my memory. Thanks again, Heidi!
Friday we were all still tuckered out from all of the fun so we stayed home and took it easy for the day. That evening we went to the Evil Aunties’ house to celebrate Aunt Shelley’s Birthday. We got to see the 4 month-old twins, Alexander and Oliver. What cuties! Madi thought they were so sweet! She kept tugging on us to come see the babies! She also made friends with Shelley’s dog, Thelma Sue.
Saturday morning we planned to go to our home church and see all of the folks there who have been so supportive, go to lunch with some family and friends, including Andria and baby Nick Martini, and then go see a model train display.
Marian and I were in the kitchen getting ready to start the day when we heard Madi wake up. Looking down the hall I noticed that she was dragging her left leg as she headed for the kitchen. I picked her up and carried her into the kitchen for her morning meds. She was slurring her words and it looked like the beginnings of another seizure. We called Dr. Horvath to let her know what was happening and while I was on the phone, Madi started having a full blown seizure. Dr. Horvath said to head for the ER immediately and she would meet us there.
Madi’s seizure lasted the entire trip to the hospital...about 30-35 minutes total. It was terrifying! Mikey was quite a trooper. He kept telling Madi that she was going to be okay and that the doctors were going to help her feel better. Madi just kept holding my hand while Marian drove us there.
Dr. Horvath met us when we arrived at the ER. She said they were going to do a CT scan of her head to see if they could determine what was causing the seizures, and they were planning to give her some anti-seizure medication. The seizure had stopped just as we arrived to the hospital and Madi was exhausted. She slept through most of the CT scan so she didn’t need to be sedated. Dr. Stookey, the ER Physician, was glad she didn’t need the sedation. When she returned from the CT scan, they drew labs and started giving her Dilantin. Madi slept for a few hours, until the Neurologist, Dr. Everett, came in. He told us that Madi has a tumor on the top, rear, right side of her brain. He said it is roughly 2 to 2 ˝ inches in size. This is causing pressure on her brain which is causing the seizures and also effecting her left leg and her ability to walk. He said that he also reviewed the scan done on Sept. 27th for comparison and the tumor was not evident in that scan. If this is the case, then this is a very fast growing tumor. The lumps on her cheek and chin continue to grow and now the glands under her jaw seem to be swelling.
Dr. Everett suggested that radiation treatment to only the tumor in her brain should give her some relief from the seizures and that it would be done in L.A. at Kaiser’s Sunset Hospital. We are not sure if we will be doing the radiation since the treatment may bring on other complications. We are still hoping for a miracle, but preparing for the worst. It is so hard to see her deteriorate so fast from the little girl that was having so much fun at Disneyland just a few days ago.
The transplant is still working perfectly, she is 100% donor cells, but the disease is so aggressive that it has found another way to attack our princess, in a place that is virtually impossible to control. With as fast as the tumor is growing, treatment won’t stop it completely. And after the treatment is completed, it will return again. I can’t bear to put her through any more. Not with such a lousy prognosis.
I can’t believe that we are here, having to make these decisions. She was doing so well and this is happening so fast. All through Madi’s treatment the answers were all so clear. Now, nothing is clear. I just want to hold her and make it all go away. It’s just too much to bear.
Please keep our little family in your prayers, we need it now like never before.
Today we celebrated Madi and Mikey’s big brother Matt’s 20th birthday with family and friends at our house. Madi and Mikey think Matt is pretty cool! I’d bet the feeling is mutual! Happy Birthday Matt. We love you!!
We also took the kids to the fire station where “Evil Auntie” Renee is a Firefighter. They were so excited! Madi kept saying “I ride a fire truck!” Mikey was wide-eyed at all of the equipment! We even got to go for a ride in the big tiller fire truck. It’s the one that has someone steering the back of the trailer. Madi and Mikey were all smiles! Thank you to Auntie Renee and everyone at the station!!!!!
GO HUG YOUR KIDS!
Madi and Mikey and Matt’s Daddy
Friday, October 17, 2003 11:09 AM PDT Friday, Oct. 17, 2003
Day Transplant + 170 / Day Stem Cell Boost +87
Hi!
After all of the scary news from yesterday’s entry, I wanted to share some HAPPY NEWS from the “Happiest Place on Earth”!
Yesterday we went to Disneyland! We had a blast!
Cousin Heidi met us at the gate with Madi’s special pass to keep her out of those germ-filled lines and an autographed picture of Minnie Mouse! (Heidi and Minnie are close personal friends!) Heidi also introduced Madi and Mikey to Pooh and Piglet (two more of Heidi’s friends), and they got their picture taken with them. Thank you Heidi!!!
As the day progressed, Madi and Mikey saw Mickey and Minnie and Donald and Goofy and Mary Poppins and Chip and Dale and Pluto and even got their picture taken with some of them, too!
We had ice cream and popcorn and pizza and Madi’s favorite, chokat chip chookies!
We went on the new Adventures of Winnie the Pooh ride and the Carousel and Peter Pan and Alice in Wonderland and Dumbo and Pinocchio and the Jungle Cruise and the Tikki Room and the Disneyland Rail Road and yes, we even went on..........It’s a Small World!!
Mikey and Daddy went on the Roller Coaster in Toon Town and we went to the Haunted Mansion. Mikey said that the Haunted Mansion wasn’t that scary, and Daddy was more afraid in It’s a Small World!!!
All day Madi kept saying, “I having FUN!!” And Mikey kept saying “this is a good day!” They played and had a great time all the way to closing time!
When we got home Madi went to sleep holding her Minnie Mouse doll. The perfect end to a perfect day!
Today we’re taking it easy, resting up. Tonight we’ll visit the Evil Aunties, and this weekend we celebrate big brother Matt’s 20th birthday at Papa and Dramma Judi’s!
Monday Madi gets her normal IV meds at Kaiser and we’ll meet with Dr. Horvath to talk about where Madi’s treatment will go from here.
Then on Tuesday, we’re off to LegoLand, and later next week, maybe California Adventure or Knott’s Berry Farm!!
O.K, I’m probably spoiling them. But what IS the limit anyway?! It’s worth it!
Sing like nobody’s listening
Dance like nobody’s watching
And love like there’s no tomorrow!
GO HUG YOUR KIDS!!!
Madi and Mikey’s Daddy
Thursday, October 16, 2003 3:04 AM PDT Thursday Oct. 16, 2003
Day Transplant + 169 / Day Stem Cell Boost +86
Hi everyone!
I’m not sure how to begin this, so I’ll just start.
Monday the 13th of October Madi had her “old” central line removed. While she was in surgery they removed a bump on her back that has been growing in size over the past few days. It started out as a bruise in N.C. but had started to change.
After the Princess recovered, we went to visit Aunt Linda and pick up Mikey. The two kids fell asleep on the way home.
The next morning was Daddy’s first day back to work. I met with my first client to make plans for his project. After about 15 minutes, my phone rang. It was Marian. Madi couldn’t walk! I hung up the phone, said good-bye, and was home ASAP.
Upon my return, Madi was walking, but rather wobbly. We called Dr. Horvath, who suggested we give her some Tylenol with codine, on the chance that it was just pain in her ankle that was sprained earlier the previous week. We gave it some time, and she seemed to be doing better. She even danced with one of her videos. We changed the dressing on her back and Madi wanted to take a nap. I figured that the codine was making her sleepy. She and I laid down to read a book, and Mommy and Mikey went to do his schoolwork. I soon noticed that Madi wasn’t using her left hand to turn the pages. I asked her to pinch my nose. She laughed and did, with her right hand. When I asked her to do it with her left hand, her hand glanced off my face as she reached. Something was wrong! I called Marian in to be sure that I wasn’t imagining things. I showed her how Madi couldn’t squeeze my finger with her left hand like she could with the right.
While Mommy held Madi, I called the clinic at Fontana Kaiser. The nurse put me on hold while she found the Doctor. As we waited, Madi’s mouth started to twitch and as the Doctor came on the line Madi had begun to drool. I told the Doctor that we were bringing Madi in immediately, and why. She said she’d meet us at the hospital.
We grabbed the essentials and sped to Fontana. Dr. Sanmarco was waiting with Dr. Yu, a Neurologist. We explained, in detail what had transpired in that frightening 3-4 minutes and they were certain that Madi had experienced a small seizure. They planed to do an MRI to see what was going on.
Dr. Sanmarco went to make the arrangements for the MRI and returned a few moments later, asked the nurse to take Mikey out to play, and told us that the pathology on the lump wich was removed the day before was back. It was leukemia. Our hearts sunk. We knew what that meant. If the leukemia was back, combined with her limping and a bump that was developing under her right eye, the MRI was pointless and they had no more “tricks up their sleeves.” We were back to where we were six months ago.
We knew when we went to North Carolina that it would be Madi’s best and last chance for a cure. It’s not easy, but it is time to say “enough.” We can’t bring ourselves to put Madi through any more. She’s been through so much, and she’s been such a champion. We are so proud of her!
They say the measure of a person is not how long they live, but how many people were changed because they lived. Madi has touched more people than I can imagine.
This is not the end. We still believe in miracles. Madi’s life has been full of them.
Dr. Horvath called today to tell us that the F.I.S.H. test came back. MADI IS STILL 100% DONOR CELLS!!!!! That means that the transplant is still working! The leukemia is NOT in her marrow or her blood! She is going to confer with Dr. Kurtzberg at Duke and let us know what they beleive this means. I will update as soon as I know. For now we are guardedly optomistic.
KEEP THE PRAYERS COMING!! IT WORKS!!!!!
Were taking the family for some much needed time together. Sea World, Disneyland, some of the places that the kids have been missing during this ordeal. It’s time to create some good, fun family memories.
Sing, like nobody’s listening.
Dance, like nobody’s watching.
And love like there’s no tomorrow.
GO HUG YOUR KIDS!!!
Madi’s Daddy
Thursday, October 9, 2003 4:27 PDT Thursday Oct. 9, 2003
Day Transplant + 162 / Day Stem Cell Boost +79
Hello everyone!!
Just a quick update today! Madison continues to do great! We are settling into our new home (still waiting on the living room furniture). As you can see from the pictures, Madi and Mikey are enjoying the backyard!
Madi goes in to have her first central line removed, the one she has had since she was five months old, on Monday, Oct. 13. The newer one that she got at Duke will remain until it is determined that she no longer needs an IV access. The goal being to avoid sticking her.
We lost another little friend from Duke on the 7th of October. Please remember baby Noah’s family. Noah was a tough little guy. He learned it from his Mom and Dad. Their strength and positive attitude is inspiring. As I have said before, those of us who have been on the transplant unit (5200) share a bond not unlike family. When we learned about Noah’s passing, Marian and I held each other and cried. Then we went into Madi’s room, watched her as she slept, and cried some more. Even now, as I am writing this, I can feel it welling up inside of me. I hardly knew this little one yet he is having such an effect on me.
Please keep all of the families from 5200 in your prayers, it makes a difference.
GO HUG YOUR KIDS!!!!!!!!!!!!!!!!
Madi’s Daddy
Sunday, October 5, 2003 4:18 AM PDT (Early a.m.) What am I doing up?
Hi everyone! This is Madi’s Mom. Madi was released from the hospital Friday afternoon. Yeah! She is doing great! They ran quite a few tests including CT Scans of her head and chest, EEG, and a chest X-Ray. Everything looks normal. The latest theory is that the loss of muscle control she experienced Monday evening, and her continuing mood swings, are a result of the steroids in her body being out of balance. She is still on the Orapred and the Hydrocortisone, so we can probably expect the mood swings to continue for a bit longer. Hopefully not too much longer...it’s a little frightening seeing our sweet little princess acting like a little monster. Sometimes we just have to laugh because she gets so irritated at the silliest things.
Overall she’s doing really well. We will take her back to the clinic on Monday afternoon, and they will be scheduling the removal of her Cook Catheter (the central line she has had since she was 5 months old) sometime later in the week. She will keep the Hickman Catheter (the one that was put in at Duke) for another 6 months or so. She will have so much fun once she doesn’t have either of her central lines. She’s never been able to go swimming or take a real bath...ever...and she loves the water, so next summer will be fun getting to take her in the ‘big pool.’
We were able to take her to the Light the Night Walk this evening. It was so great seeing so many of our friends and family that we hadn’t seen since before we left for Duke. We had over 30 people walk on Madi’s team, and the team raised over $6000.00 for the Leukemia and Lymphoma Society. Thank you to all of you who participated, and a special thanks to Judi Mitchem, Mike’s mom, for being this year’s Team Captain! You did a great job mom! We will try to post some pictures of the event soon.
Also, many of you saw Madi’s picture and the article about our little “Miracle Child” in the Press Enterprise on either Thursday or Friday. If not, I believe you can still look at it on-line by going to www.pe.com. In the Search Section, enter ‘Miracle Child’ and press Go. It should take you right to the article. If not, we can always forward you a copy if you’re interested in reading it. Thank you Rocky for writing such a nice article, and thank you Silvia for coming out to take the pictures. You were both great!
We have many things to be grateful for, and we especially want to thank all of you for your continued prayers and support. I would like to ask that you say a special prayer for Baby Noah and his family. Following is a paragraph copied from another transplant family's site regarding Noah.
"Our little friend Noah and his family are in great need of your prayers. He is still in the PICU at Duke and if a miracle doesn't happen today, his parents will have to make a decision that none of us should have to make. He is on the ventilator and it is scarring and burning his lungs so they will have to turn the machines off. You can visit Noah's website at http://www.caringbridge.org/hi/noah." I know his family appreciates your prayers and entries in their guestbook.
There are so many transplant kids that are in need of your prayers and we know from our own experiences just how powerful prayer is...please keep praying!!!
We love you all!
Marian (Madi’s Mommy)
Tuesday, September 30, 2003 9:42 PM CDT Tuesday September 30, 2003
Day Transplant 153 / Day Stem Cell Boost 70
Hello again!
Well yesterday was all sunshine and happiness as you may have noticed by the journal entry of yesterday!
All was well. Madi’s counts are climbing as they should. WBC 3.7, HGB 11.5, PLT CT 127. We went to Auntie’s Linda and Carol’s house on the way home and Madi watered the flowers in the front yard. She had a blast!
Madi fell asleep in the car and when we got home she was acting odd. Mommy took her into the house and they sat on the floor, looking through a box of stuffed animals (we’re still unpacking!). Madi was reaching for an animal so Mommy set her on the floor in front of her. In a few moments Madi tipped over. As she lay there she laughed and said “I fall down!” Marian set her back up, thinking she was goofing, but she tipped over again! Marian picked her up onto her lap and asked if she was alright and she said yes. I came into the room and Marian related the story to me. I asked Madi to come give me a hug and as she tried to get off Mommy’s lap she fell over again. She laid there and I asked her if she was alright and again she said yes. I asked her “who loves you the most” and she said that ”Mikey does!” All the verbal responses were right but something was very wrong. It was as if she were drunk. We called Dr. Horvath and we were off to the ER at Fontana Kaiser.
We called Dr. Kurtzberg at Duke to let her know what was happening on the way to the hospital and when Dr. Horvath met us at the hospital she said that she had also call Dr. K. It’s reassuring to know that the two Drs. are working together to take care of Madi! Especially for a neurotic Daddy! The two Drs. felt that Madi most likely had an infection of some kind so they cultured her lines and started her on three antibiotics. A chest x-ray was taken and she was off to the pediatric ward for the next three days to wait for the results of the cultures and for more tests and observation.
Madi is doing fine. She is still having moments of irritability, but she seems to be doing better. Tomorrow she will have a CT Scan and more than likely other tests until they can figure out what was going on for sure.
I will update as I get more information. Until then, pray that Madi will be fine and back home to go to the Light the Night walk on Saturday!!
Just another bump in the road!
GO HUG YOUR KIDS!! (I hope you do ‘cause I’m serious when I say that!)
Madi’s Daddy
Monday, September 29, 2003 2:49 PM CDT Monday September 29, 2003
Day Transplant + 152 / Day Stem Cell Boost +69
Hello again everyone!
Sorry for the delay in updates! We are getting settled into our new home in Riverside and it has been a little time consuming, to say the least!
Madi continues to do wonderfully! She is enjoying her new surroundings. She still loves to dress up and is having fun riding her scooter and Jeep in the back yard! It is a real blessing to have a yard that she can play in safely.
Mikey has learned to ride his bike without the training wheels!! Big brother Matt helped him take them off and coached him this weekend. He is so excited!!
We have only had to go in to Kaiser 4 times since we’ve been home. She should only have to go in once every other week for labs and her scheduled IVIG. It’s a nice change from the daily trips to the clinic we had been getting used to.
We are looking forward to Saturday, October 4th, when Madison will be the Honored Patient for the Leukemia and Lymphoma Society’s Light the Night walk at Pharaoh’s Lost Kingdom in Redlands. The address is 1101 N. California Street, Redlands, CA 92374. You can see the park from the 10 freeway. It feels good to be able to support those who lead us to Duke’s transplant program. We are forever in their debt. We look forward to seeing many of you there and want to thank those who are unable to attend that have sent donations in Madi’s name. If you are interested in joining us, you can still register in advance by going online to www.lightthenight.org, or you can register on site at 4:30 p.m. The walk begins at 6:00 p.m. Be sure to sign up for Madison Mitchem’s Friends and Family team. We hope you can come. It will be Madi’s and our first chance since her transplant to see all of you. Madi still has a compromised immune system and we will be exercising extreme caution for her exposure to any germs. Please understand, we are still not able to take Madi out in public. We haven’t been able to take her to church, or have visitors, and we are avoiding crowds totally, however, since this is an outdoor, one-time event, we are able to take Madi as long as she wears her mask and everyone keeps a reasonable distance. Please forgive the paranoid Mommy and the neurotic Daddy. We know you all understand.
This is a very exciting time for us. Every day seems more and more “normal”. Thank you all for your unending support and prayers.
GO HUG YOUR KIDS! Hope to see you Saturday.
Madi’s Daddy
P.S. Please continue to pray for the many transplant kids and their families back at Duke and here at home.
Sunday, September 14, 2003 10:57 PDT Sunday, Sept. 14, 2003
Hey everyone!
Sorry for the delay in updating the site! We’ve been really busy getting our new home ready! We found a house to rent in Riverside, closer to the hospital where they will be keeping an eye on Madi’s progress. She is doing great!! Her counts continue to improve, and she is only having to get her blood checked once a week. Mikey and she are looking forward to having their own back yard to play in and mom and dad are looking forward to being “home” in our own place again! I’ll be updating again soon with more pictures so stay tuned!
NOW GO HUG YOUR KIDS!!!!!!!!
Madi’s Daddy
P.S!!! KEEP OCTOBER 4th , 2003 OPEN ON YOUR CALENDER FOR THE LEUKEMIA AND LYMPHOMA SOCIETY’S “LIGHT THE NIGHT” WALK AT PHAROAH”S LOST KINGDOM IN REDLANDS, CA!! MADI IS THE HONORED PATIENT FOR THIS YEAR’S EVENT! IF YOU ARE LOCAL, WE HOPE YOU CAN BE THERE, AND IF NOT, WE HOPE YOU’LL HELP SUPPORT MADISON’S TEAM, “MADISON MITCHEM’S FRIENDS AND FAMILY”. YOU CAN REGISTER ONLINE AT WWW.LIGHTTHENIGHT.ORG, OR FEEL FREE TO EMAIL ME AT MITCHEM@WWDB.ORG IF YOU HAVE ANY QUESTIONS.
Thursday, September 4, 2003 10:39 AM CDT Thursday, September 4, 2003
Day Transplant 127 / Day Stem Cell Boost 44
WE’RE HOME!!!!! Okay, we’re in California! We’re looking for a home. We may have found a place in Riverside. We’ll know later today. (Thanks Lloyd and Joan!)
Yesterday was an answer to many prayers. Thank you God for letting us come home with our little girl!!!
The flight home was exciting. Our Citation V left Raleigh/Durham Airport and we flew to Oklahoma for fuel. Madi and Mikey were so excited that when we landed in Oklahoma Madi shouted, “I ride on a airplane!!!” While the plane was being refueled, we had refreshments and a potty break in the hanger, and then as we headed for the plane, the pilots were standing beside the plane waiting, and Mikey, with popcorn in one hand and a Diet Coke in the other, yelled to the pilots, “Ok, let’s rock and roll!” The pilots laughed and said, “Ok Buddy!” And we were on our way.
We saw the Grand Canyon and Lake Havasu and lots of beautiful country on our way to Ontario. Madi and Mikey kept talking about how huge all the clouds were. Mikey was amazed at how fast we were flying. He thought going 490 mph was pretty cool.
After being in North Carolina for almost 5 months, we were never so happy to fly into all the smog and see all the dry, brown vegetation. Don’t get me wrong, North Carolina was green and beautiful, and the trees and vegetation there are awesome, however, the humidity, how can I say this, okay, IT SUCKED!!! There’s just something nasty about stepping out your front door in the morning and feeling like you stepped into a sauna. I’m a sweaty guy anyway, and that just made matters worse.
We were met by a welcoming party in Ontario. Thanks to all of you who came out to the airport to meet us. It was great sharing such a special occasion with close friends and family. The folks at the FBO in Ontario didn’t remember ever seeing so much luggage come out of such a small plane. Apparently, very few princesses fly into Ontario’s FBO. We are so thankful for the Corporate Angels Network for making it possible to bring Madi home in a safe environment, and we are thankful to the people with Netjets that made us feel so at home.
Papa and Grandma Judi arrived safely in Washington DC and they got a hotel right near the Pentagon. They called just after we arrived in Ontario and said they were on their way out to do some sight seeing. Thanks for bringing our van back for us Papa and ‘Dram’. Can’t wait to see you in a week or two. By the way, I can’t count the number of times Mikey said, “Papa and Grandma Judi are going to get there before we do because this is taking soooooo long!” I don’t think he has a real grasp on the whole time and space thing.
Big Brother Matt, his girlfriend, Kristin, and Aunties Linda and Carol came back to Grandma Flora Maye’s house with us. We spent the afternoon and evening catching up and enjoying being together as a complete family! We had some ‘real’ Mexican food from Guadalajara’s last night...a ‘real’ Mexican restaurant. It seemed fitting since the last food we had before we left for NC was from Guadalajara’s.
Madi goes to meet with Dr. Horvath at Kaiser in Fontana tomorrow morning. Madi is doing very well. We are noticing positive changes in her every day.
Thank you to Dr. Kurtzberg and the rest of our extended family at Duke for making our trip home WITH Madison possible. We can’t thank you enough! We’ll see you again for Madi’s follow-ups in a few months. We love you all!
So begins the next chapter....
We’ll keep you updated on Madi’s progress.
GO HUG YOUR KIDS!
Madi’s Daddy
P.S. A special thanks to all our family who have put their lives on hold to help us with the care of Madison.
Please keep all the transplant families back at Duke in your thoughts and prayers. We feel a tremendous family tie with everyone who has gone through or is going through this process.
Monday, September 1, 2003 10:47 AM CDT Monday, September 1, 2003
Day Transplant + 124 / Day Stem Cell Boost + 41
Hurray!
Madi’s ANC was 260 yesterday!!!! By Wednesday it should be at least 500 at this rate!
Her counts are holding well and her ANC has continued to climb from 7 on Wednesday, to 132 on Friday, to 260 as of yesterday! Her rash continues to fade and should be gone soon.
Some generous person donated 100 hours of flight time to the Corporate Angels Network and they are allowing us to use 6 of those hours. We can’t tell them enough how much we appreciate it! We are scheduled to fly home to California on Wednesday morning and will be arriving in Ontario, California early Wednesday afternoon. It is a chartered flight exclusively for Princess Madison and her family. The Corporate Angels Network is an incredible organization that makes it possible for children with medical issues like Madi’s to travel in a safe environment.
Papa and Grandma Judi will be heading off to Washington, DC on their way home to California. They will be making a few stops and enjoying the trip home while taking our van back for us.
Thank you all for your thoughts and prayers during our stay here in Durham. We have made many new friends here and will miss y’all. Even so, it will be good to be back home. Well, it will be when we actually FIND a home!! God has been taking good care of us so far and we trust that He will continue to do so!!
The adventure continues!
CALIFORNIA HERE WE COME!
GO HUG YOUR KIDS!!!!!!!
Madi’s Daddy
P.S. Papa Ray’s brother, Harvey Mitchem, passed away yesterday morning, August 31st. He had been battling cancer for a couple of years. We would like to ask that you remember Uncle Harvey’s family in your prayers.
Monday, August 25, 2003 9:00 PM CDT August 25, 2003
Day Transplant + 117 / Day Stem Cell Boost + 34
HEY EVERYONE!!!!!
MADI HAS 100% DONOR CELLS!!!!!
The Mylotarg worked!! We learned today that Madi’s latest FISH test came back 100% boy cells or donor cells. Madi’s white blood cell count is coming up, so she will soon have a high enough ANC to come home to California. Dr. Kurtzberg wants Madi to have an ANC of about 500 before we leave. It’s just a matter of time!
We are waiting on the results of a skin biopsy of a rash that has been spreading over Madi’s body. The preliminary reading is that it is NOT Leukemia. What a relief! We still don’t know what it is. But we do know what it isn’t!! I told the doctor as long as Madi has 100% donor cells, who cares about a little rash!!! She agreed. She feels that it may go away without our ever knowing what it is. Thankfully, Madi is not having any itching or irritation from her rash. It just looks bad.
Yesterday was a beautiful day! Doctor Kurtzberg referred us to the Durham Museum of Life and Science. It’s very kid oriented. There were lots of things to see and do. There was a train to ride, animals to see, a butterfly house to see butterflies up close, and a percussion area outside to bang on all kinds of things and make LOTS of noise! It was a GREAT day! Thanks Dr. K!!!
We are looking forward to going home to California. It will be kinda scary to leave Duke and Dr. K and our team of nurses, but Dr. K assures us that she won’t let us leave until Madi is safe to go home.
Once again God has answered our prayers!
Thank you all for keeping us in your thoughts and prayers. It works! We see it here every day!!
NOW GO HUG YOUR KIDS!!!
Madi’s Daddy
P.S. Please remember these people who are in need of your prayers:
The Hendrix family. Little Madison Hendrix lost her battle with ALL on Tuesday, July 29th. She was only 18-months old. Our hearts are just broken for Terry and Debbie. We felt such a bond with this family and we pray God’s grace will be with them as they deal with the loss of their beautiful Madison.
Alex www.alexupdate.com is back home from PICU and is doing very well.
Alexander and Oliver are both at home. We just saw pictures of their home-coming and they are just too cute!
Tommy www.caringbridge.org/ca/bennettboys is 3 years old and he has Sanfilippo Syndrome, also called MPS-III. He has already undergone 2 umbilical cord blood transplants. Tommy is inpatient now and he just had his spleen removed. He is going to receive his 3rd transplant in a couple of days. Tommy has a sister, Ciara, 7 years old, and a brother, Hunter, 5 years old, and they also have Sanfilippo Syndrome. Unfortunately, they are not eligible for transplant because too much damage has already been done to their bodies. Sanfilippo children usually don't live past the age of 10-13 years old.
Brandyn www.caringbridge.org/ca/kingbrandyn has relapsed again and his Bone Marrow Transplant is postponed until he is back in remission.
Manny www.caringbridge.org/sc/mannymiramontes battling Adrenoleukodystrophy and his family is dealing with the news that Manny has lost all of his sight and most of his hearing. Manny was discharged and is now an outpatient!
Noah www.caringbridge.org/hi/noah is an adorable little 10-month old fighting Krabbe’s Disease. His parents are so strong in their faith and are an incredible example to us.
Madi’s Uncle Harvey who was diagnosed with cancer
Cindy Lougee recently diagnosed with CML
Nolan www.caringbridge.org/co/nolanramsey is being treated for Hurler Syndrome and also had his transplant in April. Please pray that things continue to go well for Nolan. He was released to go back to Colorado and is home now!
Brandon www.caringbridge.org/ca/ourbrandon is another friend from Kaiser at home.
Jeremiah www.caringbridge.org/ia/jeremiah is also battling Adrenoleukodystrophy. He made it home to Iowa this weekend.
Jillian’s family www.caringbridge.org/fl/jillian Jillian’s battle against ALL ended on July 8th. Their family is a real inspiration to us.
David St. Pierre has had his surgery and it went very well! He has been released and is on the road to recovery.
Jessica www.geocities.com/barbiegirljessica2003 is a young girl who visits Madi’s sight often and leaves encouraging messages.
Friday, August 15, 2003 0:09 AM CDT August 14, 2003
Day Transplant +106 / Day Stem Cell Boost +23
Hi everyone!
Madi had her clinic visit with Dr. Kurtzberg on Tuesday the 12th. She is doing well with the Mylotarg treatment. We are still in the “wait and see” mode. It will just take time to see how she responds.
Madi has lost some of her appetite, due to the mucositis, so we are giving her TPN at night until she starts eating more. She has lost a couple of pounds and we don’t want that to get out of hand.
Dr. K says we may get to go home in two to four weeks but that all depends on Madi. We continue to enjoy every day with the kids. They are full of fun!
Mikey and Madi’s Grandma Flora Maye flew home on Tuesday. We all miss her, especially the kids! She is going on a trip in September so she had lots to do before she goes and needed to get back home.
Papa and Grandma Judi arrived on Monday and will be here until we head for home. They will be driving our van home and making a vacation trip to see some sights and some friends along the way. Madi and Mikey are really enjoying their time with all three grandparents. And I know that the folks are loving it too!
Madi started some of her 100 day tests today and then got a platelet transfusion. While Mommy and Madi were gone, Mikey and Grandma Judi baked a cake! It was really good!
The kids spent the evening playing and dancing to music on TV. It’s fun to see them dance together! Madi has no problem keeping up with her five-year-old brother! She also likes to do the Hula Hoop with Mikey. This is something you’d have to see! Mikey is pretty good at it! Madi has the basic concept down, but hasn’t got the coordination to keep the ‘Hoop in motion! She just swings it around her body, shakes her booty and the Hula Hoop swirls around and around and down to the ground. Then she picks it up and does it again, and again, and again..... It’s that same “never give up” attitude! She is a winner!
Tomorrow we take labs in and wait to see if she needs any transfusions. Just another day in paradise! And I wouldn’t trade it for the world!!!
GO HUG YOUR KIDS!
Madi’s Daddy
P.S. Please remember these people who are in need of your prayers:
The Hendrix family. Little Madison Hendrix lost her battle with ALL on Tuesday, July 29th. She was only 18-months old. Our hearts are just broken for Terry and Debbie. We felt such a bond with this family and we pray God’s grace will be with them as they deal with the loss of their beautiful Madison.
Alex www.alexupdate.com is back home from PICU and is doing very well.
Alexander and Oliver are both at home. We just saw pictures of their home-coming and they are just too cute!
Tommy www.caringbridge.org/ca/bennettboys is 3 years old and he has Sanfilippo Syndrome, also called MPS-III. He has already undergone 2 umbilical cord blood transplants. Tommy is inpatient now and he just had his spleen removed. He is going to receive his 3rd transplant in a couple of days. Tommy has a sister, Ciara, 7 years old, and a brother, Hunter, 5 years old, and they also have Sanfilippo Syndrome. Unfortunately, they are not eligible for transplant because too much damage has already been done to their bodies. Sanfilippo children usually don't live past the age of 10-13 years old.
Brandyn www.caringbridge.org/ca/kingbrandyn has relapsed again and his Bone Marrow Transplant is postponed until he is back in remission.
Manny www.caringbridge.org/sc/mannymiramontes battling Adrenoleukodystrophy and his family is dealing with the news that Manny has lost all of his sight and most of his hearing. Manny was discharged and is now an outpatient!
Noah www.caringbridge.org/hi/noah is an adorable little 10-month old fighting Krabbe’s Disease. His parents are so strong in their faith and are an incredible example to us.
Madi’s Uncle Harvey who was diagnosed with cancer
Cindy Lougee recently diagnosed with CML
Nolan www.caringbridge.org/co/nolanramsey is being treated for Hurler Syndrome and also had his transplant in April. Please pray that things continue to go well for Nolan. He was released to go back to Colorado and is home now!
Brandon www.caringbridge.org/ca/ourbrandon is another friend from Kaiser at home.
Jeremiah www.caringbridge.org/ia/jeremiah is also battling Adrenoleukodystrophy. He made it home to Iowa this weekend.
Jillian’s family www.caringbridge.org/fl/jillian Jillian’s battle against ALL ended on July 8th. Their family is a real inspiration to us.
David St. Pierre has had his surgery and it went very well! He has been released and is on the road to recovery.
Jessica www.geocities.com/barbiegirljessica2003 is a young girl who visits Madi’s sight often and leaves encouraging messages.
Monday, August 11, 2003 11:40 PM CDT August 11, 2003
Day Transplant 103 / Day Stem Cell Boost 20
Hi everyone!
Madi’s back home! She got her second dose of Mylotarg on Sunday and is responding well. She is having some bleeding in her mouth today. This is not uncommon. As her cell count drops, she becomes susceptible to mucositis (sores on the lining of the mouth, esophagus, stomach, and intestines). She got a platelet transfusion today, as she has every day since the first dose of Mylotarg. This will help to stop the bleeding. It seems that her mouth is all that has been effected, and she doesn’t complain about it hurting. She’s one tough little kid!
Tomorrow is her scheduled clinic day and we’ll be seeing Dr. Kurtzberg and getting another platelet transfusion. Dr. K has been on a well deserved vacation this past week and it will be good to have her back!
Madi continues to be her usual self! Every day we go to the clinic to have a transfusion and without fail when the nurse unhooks her from her “tubies” she throws her hands in the air and exclaims “I’M FREE, I’M FREE!" She is truly amazing!
Thanks for all of your thoughts and prayers!
GO HUG YOUR KIDS!!
Madi’s Daddy
P.S. Please remember these people who are in need of your prayers:
The Family of Jimmy Glubka. Jimmy passed away on Tuesday, August 5th. He received a bone marrow transplant in June 2003 at the City of Hope. He relapsed with ALL back in December 2002 and we saw their family often as Jimmy and Madi spent lots of time at the Kaiser in Fontana. What a special family and what a sweet boy! He will be greatly missed!!
The Hendrix family. Little Madison Hendrix lost her battle with ALL on Tuesday, July 29th. She was only 18-months old. Our hearts are just broken for Terry and Debbie. We felt such a bond with this family and we pray God’s grace will be with them as they deal with the loss of their beautiful Madison.
Alex www.alexupdate.com is back home from PICU and is doing very well.
Alexander and Oliver are both at home. We just saw pictures of their home-coming and they are just too cute!
Tommy www.caringbridge.org/ca/bennettboys is 3 years old and he has Sanfilippo Syndrome, also called MPS-III. He has already undergone 2 umbilical cord blood transplants. He is waiting to find out when he will undergo his 3rd transplant. Tommy has a sister, Ciara, 7 years old, and a brother, Hunter, 5 years old, and they also have Sanfilippo Syndrome. Unfortunately, they are not eligible for transplant because too much damage has already been done to their bodies. Sanfilippo children usually don't live past the age of 10-13 years old.
Brandyn www.caringbridge.org/ca/kingbrandyn has relapsed again and his Bone Marrow Transplant is postponed until he is back in remission.
Manny www.caringbridge.org/sc/mannymiramontes is battling Adrenoleukodystrophy. He is only 6 years old and has lost all of his sight and his hearing. He is very frightened and calls out for his parents often, confused at not being able to see or hear them. His mother is so strong…she amazes us. They have two younger children who are also struggling with their mother being in another state caring for their brother.
Noah www.caringbridge.org/hi/noah is an adorable little 10-month old fighting Krabbe’s Disease. His parents are so strong in their faith and are an incredible example to us.
Madi’s Uncle Harvey who was diagnosed with cancer
Cindy Lougee recently diagnosed with CML
Nolan www.caringbridge.org/co/nolanramsey is being treated for Hurler Syndrome and also had his transplant in April. Please pray that things continue to go well for Nolan here at Duke and that he will be released to go back to Colorado this Sunday.
Brandon www.caringbridge.org/ca/ourbrandon is another friend from Kaiser at home.
Jeremiah www.caringbridge.org/ia/jeremiah is battling Adrenoleukodystrophy.
Jillian’s family www.caringbridge.org/fl/jillian Jillian’s battle against ALL ended on July 8th. Their family is a real inspiration to us.
David St. Pierre has had his surgery and it went very well! He has been released and is on the road to recovery.
Jessica www.geocities.com/barbiegirljessica2003 is a young girl who visits Madi’s sight often and leaves encouraging messages.
Thursday, August 7, 2003 11:11 PM CDT Thursday, August 7, 2003
Hi everybody! This is Marian. We were able to bring Madi ‘home’ from the hospital this afternoon!!!! Yeah!!! We will continue giving her the 3 antibiotics she was receiving while inpatient from here at home. The doctors couldn’t see keeping her there when she was doing so well. She was sitting in bed playing with her Barbie’s and dancing around like nothing’s wrong, so they decided to go ahead and let us take her home so she can have a little freedom between ‘hook-ups”. One of the antibiotics she will be receiving has to run for 2 hours, 3 times a day, so it may slow her down a bit, but probably not much.
We have to be at the clinic at 8:30 a.m. tomorrow and she will probably receive platelets again…she has received them every day for over a week now, so we’re rather expecting it.
Obviously, we are a little disappointed that we aren’t heading for California tomorrow, or at least some time in the near future, as tomorrow is Day 100 Post Transplant. However, we are just excited that Madi is still doing so well and that we continue to be blessed with more and more Bonus Days! Tomorrow, Aug. 8th, marks the 2nd anniversary of when Madi was originally diagnosed with ALL. (Sometimes it seems like 20 years ago.) It’s hard to believe so much has happened in only 2 years.
Next week will be pretty busy as they are in the process of scheduling Madi’s “100-Day Tests”. Not sure yet exactly what that means, but we’ll keep you posted.
The Ramsey’s, Baby Nolan’s family, are going to be heading home for Colorado this weekend. We are excited for them, but sad for us, as we will really miss them!!! Mikey has enjoyed spending a couple of days this week playing with Cooper and McKenzie, Nolan’s big brother and sister. Sam and Nancy—thanks for being such good friends. We love you! Have a safe trip home!
Thanks again to all of you for your continued prayers for our little princess! It’s easy to see how powerful prayer is when you see Madi.
Love you all!
Marian
P.S. Please remember these people who are in need of your prayers:
The Family of Jimmy Glubka. Jimmy passed away on Tuesday, August 5th. He received a bone marrow transplant in June 2003 at the City of Hope. He relapsed with ALL back in December 2002 and we saw their family often as Jimmy and Madi spent lots of time at the Kaiser in Fontana. What a special family and what a sweet boy! He will be greatly missed!!
The Hendrix family. Little Madison Hendrix lost her battle with ALL on Tuesday, July 29th. She was only 18-months old. Our hearts are just broken for Terry and Debbie. We felt such a bond with this family and we pray God’s grace will be with them as they deal with the loss of their beautiful Madison.
Alex www.alexupdate.com is back home from PICU and is doing very well.
Alexander and Oliver are both at home. We just saw pictures of their home-coming and they are just too cute!
Tommy www.caringbridge.org/ca/bennettboys is 3 years old and he has Sanfilippo Syndrome, also called MPS-III. He has already undergone 2 umbilical cord blood transplants. He is waiting to find out when he will undergo his 3rd transplant. Tommy has a sister, Ciara, 7 years old, and a brother, Hunter, 5 years old, and they also have Sanfilippo Syndrome. Unfortunately, they are not eligible for transplant because too much damage has already been done to their bodies. Sanfilippo children usually don't live past the age of 10-13 years old.
Brandyn www.caringbridge.org/ca/kingbrandyn has relapsed again and his Bone Marrow Transplant is postponed until he is back in remission.
Manny www.caringbridge.org/sc/mannymiramontes is battling Adrenoleukodystrophy. He is only 6 years old and has lost all of his sight and his hearing. He is very frightened and calls out for his parents often, confused at not being able to see or hear them. His mother is so strong…she amazes us. They have two younger children who are also struggling with their mother being in another state caring for their brother.
Noah www.caringbridge.org/hi/noah is an adorable little 10-month old fighting Krabbe’s Disease. His parents are so strong in their faith and are an incredible example to us.
Madi’s Uncle Harvey who was diagnosed with cancer
Cindy Lougee recently diagnosed with CML
Nolan www.caringbridge.org/co/nolanramsey is being treated for Hurler Syndrome and also had his transplant in April. Please pray that things continue to go well for Nolan here at Duke and that he will be released to go back to Colorado this Sunday.
Brandon www.caringbridge.org/ca/ourbrandon is another friend from Kaiser at home.
Jeremiah www.caringbridge.org/ia/jeremiah is battling Adrenoleukodystrophy.
Jillian’s family www.caringbridge.org/fl/jillian Jillian’s battle against ALL ended on July 8th. Their family is a real inspiration to us.
David St. Pierre has had his surgery and it went very well! He has been released and is on the road to recovery.
Jessica www.geocities.com/barbiegirljessica2003 is a young girl who visits Madi’s sight often and leaves encouraging messages.
Wednesday, August 6, 2003 9:18 AM CDT Aug. 6, 2003
Hi everybody! This is Madi's Mommy, Marian.
Just wanted to let everyone know that Madi is still inpatient. We hoped she might be able to return here to the apartment today, Wed., but they decided to move her to another room, 5215, instead. At least the new room has it's own restroom, so Madi will be able to continue using the big girl potty. Looks like they want to keep an eye on her for another couple of days. She is still spiking fevers, but they come down quickly after she receives the Tylenol, so she is still happy and having fun.
She is spending lots of time watching The Wiggles, playing with her Barbies (mostly playing with their shoes) and now that she has the mask thing figured out, she has been able to go out in the hallway and ride in the wagons, etc.
She is getting a little restless and already wants to go home, but Nurse Kelly and Nurse Lori help to keep her entertained. Thanks!
Grandma Flora Maye got here safely yesterday and spent the evening at the apartment with Mikey so Mike and I could both be with Madi. Thank you Grandma!! It's so nice having someone here to help with Mikey so we can focus what attention we need to on the Princess.
I'm including the update that Aunt Linda sent out yesterday below. If you want to receive her "Madi updates" via email, whenever they go out, just let her know at dealyl@wwdb.org.
Thanks for all of your love and support.
Love to you all.
Marian
Madison Renee Mitchem - Update #72 - Tuesday, August 5, 2003
Hi Madi Fans,
That Mylotarg stuff is really potent! It knocked out all of Madi's white cells that had that CD33 marker (some DNA sort of stuff). YEAH!!
The down side of losing all those white cells is that she was left very neutropenic (susceptible to infection). A couple of days ago she awoke complaining of a tummy ache and had a low grade fever. Once it got over 101 degrees, Mike took her over to the clinic just to be on the safe side. All her ports were cultured and they started her on some antibiotics just to be on the safe side. They stayed in and kept a really low profile for a couple of days, just to be on the safe side. Then, this morning the cultures came back.
A doctor awoke Mike and Marian at 12:30 a.m. to let them know that Madi's cultures had started growing a strep bacteria infection in each of the ports of both catheters. So, they thought it might be a good idea to admit her to the hospital just to be on the safe side. She had a fever of over 103 degrees when she got to the hospital around 1:30 this morning but by 6:00 ish, it had broken and the nurses reported to Marian that Madi was sleeping soundly and so was Daddy.
These are the sorts of things that occur during the transplant process. One cannot predict which child will have what things when, so they are all required to stay at least 100 days. Most stuff happens before or right around that time. So, just to be on the safe side, they don't let any of them go very far away until they've passed through enough of these things to be on the safe side.
And, because the Little Princess is at Bonus Day 97, now is a good time to have a couple of sleep overs at the hospital just to be on the safe side. Amazingly, I just put Grandma Flora Maye on a plane so she'll be there this afternoon in time to hang out with Mikey for the week. Then, Grandma Judi and Papa Ray will fly to North Carolina next week to take over. Just when they needed some help again, that's when the Grandparents reached their limit and just had to go see the little M family.
God is still working in mysterious ways. And, Madi could use some extra prayers today to keep her fever down and to make sure the antibiotics are going to wipe out her infection. And, to get those new cells to GROW, GROW, GROW!!!
Thanks, everybody! May you be blessed.
Love,
Madi's Aunt Linda
Monday, August 4, 2003 6:04 PM CDT August 4, 2003
Day Transplant +96 / Day Stem Cell Boost +13
Hey everyone!
Madi has been getting platelet transfusions every day since the day after she got the Mylotarg. The Mylotarg took out the bad cells but also wreaked havoc on the rest of her blood system. This was expected and isn’t a cause for alarm. We do lab draws every day. They monitor the results and give her whatever is required to keep the system within safe levels. So far, so good!!
As usual, Madi continues along as if nothing has changed ! She is unbelievable!
Last night, August 3, she had another fever of over 102. At 11:00 p.m. Madi and Daddy were at the BOP room having cultures and labs drawn. She has been getting Cefepime ever since last Saturday’s fever. The cultures from last Saturday came back negative, but Dr. K decided to continue the Cefepime to help her out. She has had a WBC of between .1 and .4 since the Mylotarg treatment. Since she was running a fever last night, even while on the Cefepime, the doctor gave her another dose of Vancomycine (she had one dose on Saturday with the first fever).
While Madi got her premeds and Vancomycine, nurse Latane came in to let us know that she would be getting platelets also. Her platelet count was 5. By 3:00 a.m. this morning, we were back home. Madi’s temp was normal and we went to sleep.
8:30 this morning, Madi’s temperature was 102 again. We drew her labs and I dropped them off by 9:00. At 11:00 Mommy and Mikey dropped us off at the clinic for platelets and another dose of Vancomycine. Madi had blood in her mouth when we left home, so I had NP Natalie take a look at it. Her tongue was sloughing off some skin and was bleeding. It made my legs hurt to look at it, but of course, Madi never complained! Not once!! This explains why she hasn’t had as much of an appetite as usual. I am amazed at her threshold for pain! That HAS to hurt!
Dr. Szabolzs came in to look at her mouth and said that it looked better than he expected. He told me that this is a result of her being neutropenic. She is susceptible to sores from mucousitis. All of this will subside when her WBC comes up. Until then we will try Pediasure to replace what she is missing from not eating as much, and take extra care of her bottom to keep any diaper rash at bay. Hopefully her potty training will help her in that regard.
Madi continues to be her cute little self in spite of all the strange things that are going on inside of her little body! Whatever they dish out, she takes and keeps on dancin’! She blows me away!
Mikey has had some challenges of his own. Last week he was complaining about an ear ache. He had been swimming a lot while at day camp, and had swimmer’s ear, which fortunately cleared up after getting the wax out of his ears. Unfortunately, the next day a nurse practitioner took a look at his eyes and confirmed he had conjunctivitis. A couple days of antibiotic drops in his eyes and he was good to go. Then he got this cough, runny nose thing. Well, some cough medicine every 4-6 hours helped with that. Then there came the ear infection. This was probably caused by the constant coughing. He started on some antibiotics on Thursday evening and the ear problem now seems to be a thing of the past! The cough has subsided and we anticipate that within another day or two he should be as good as new.
Other than that, everything has been wonderful!!
Obviously we’ve had some ups and downs. But God has helped us through them all. We don’t have to look very far around here to find someone with more problems that we have. It’s a very humbling experience. I thank God every day for the blessings we have received in the process of caring for Madi. For all of our friends, family, the staff here at Duke, those at Kaiser who made this treatment at Duke possible, but especially for Madi’s Mommy, Marian. I am truly blessed to have her for my own. And I know the kids would agree!
Thank you for all of your support and prayers. Keep them coming!
NOW GO HUG YOUR KIDS!
Madi’s Daddy
P.S. Please remember these people who are in need of your prayers:
The Hendrix family. Little Madison Hendrix lost her battle with ALL on Tuesday, July 29th. She was only 18-months old. Our hearts are just broken for Terry and Debbie. We felt such a bond with this family and we pray God’s grace will be with them as they deal with the loss of their beautiful Madison.
Alex www.alexupdate.com is back home from PICU and is doing very well.
Alexander and Oliver are both at home. We just saw pictures of their home-coming and they are just too cute!
Tommy www.caringbridge.org/ca/bennettboys is 3 years old and he has Sanfilippo Syndrome, also called MPS-III. He has already undergone 2 umbilical cord blood transplants. Tommy is inpatient now and he just had his spleen removed. He is going to receive his 3rd transplant in a couple of days. Tommy has a sister, Ciara, 7 years old, and a brother, Hunter, 5 years old, and they also have Sanfilippo Syndrome. Unfortunately, they are not eligible for transplant because too much damage has already been done to their bodies. Sanfilippo children usually don't live past the age of 10-13 years old.
Brandyn www.caringbridge.org/ca/kingbrandyn has relapsed again and his Bone Marrow Transplant is postponed until he is back in remission.
Manny www.caringbridge.org/sc/mannymiramontes battling Adrenoleukodystrophy and his family is dealing with the news that Manny has lost all of his sight and most of his hearing.
Noah www.caringbridge.org/hi/noah is an adorable little 10-month old fighting Krabbe’s Disease. His parents are so strong in their faith and are an incredible example to us.
Madi’s Uncle Harvey who was diagnosed with cancer
Cindy Lougee recently diagnosed with CML
Nolan www.caringbridge.org/co/nolanramsey is being treated for Hurler Syndrome and also had his transplant in April. Please pray that things continue to go well for Nolan here at Duke and that he will be released to go back to Colorado this Sunday.
Brandon www.caringbridge.org/ca/ourbrandon is another friend from Kaiser at home.
Jeremiah www.caringbridge.org/ia/jeremiah is also battling Adrenoleukodystrophy. He made it home to Iowa this weekend.
Jillian’s family www.caringbridge.org/fl/jillian Jillian’s battle against ALL ended on July 8th. Their family is a real inspiration to us.
David St. Pierre has had his surgery and it went very well! He has been released and is on the road to recovery.
Jessica www.geocities.com/barbiegirljessica2003 is a young girl who visits Madi’s sight often and leaves encouraging messages.
Wednesday, July 30, 2003 8:20 AM CDT Tuesday, July 29, 2003
Day Transplant +90 / Day Stem Cell Boost +7
Hello everyone,
Madi was given her first dose of Mylotarg on Sunday July 27th and, as usual, had no negative side effects. The infusion process took the better part of the day and when she got back home she was the same as always. Happy, laughing,....antagonizing her brother. They keep warning us of the possible side effects of the many treatments that Madi has been given. Fever, nausea, etc. She refuses to participate!
Monday morning Mommy took Madi’s blood draws to the lab and then she and Mikey did some shopping.
Later, I called the clinic to check the lab results. The Mylotarg had done it’s job. The white count was down and the bad cells were gone. With the bad cells out of the way, the donor cells have a better chance of regaining the upper hand. The only challenge so far has been an increased level of uric acid in her system. They had us bring Madi in for a few hours of hydration on Monday afternoon to bring the level down again, and they raised her dosage of Allopurinol which also helps control the uric acid level.
Today, Tuesday, I took Madi in for her scheduled clinic visit to get the usual IVIG and to see Dr. Kurtzberg. She also was given more hydration. The uric acid level had come down but needed to be somewhat lower to be in the preferred range. Her platelet count was down, so she got that topped off, too. Another long day at the clinic. Sometimes it can get tiring to be at the clinic for such a long time, but I must say that I’d give up every Tuesday for the rest of my life to take Madi home with me! It seems a small price to pay!
Dr. Kurtzberg says we may be here another four weeks, of course that is contingent upon many things. I know it’s hard to say with any degree accuracy.
Grandma Flora Maye will be here on Tuesday the fifth of August. She’s coming to visit for a week. Papa and Grandma Judi will be arriving on Sunday the tenth of August to stay a couple of weeks and then drive the van home so I can fly home with Marian and the kids. They plan to make some stops to visit friends on their way home. Mikey and Madi are sure excited that Papa and the Grandmas are coming! (Sounds kinda like a singing group doesn’t it?!)
Thanks for all of your thoughts and prayers!!! It means the world to us and I know that it has helped to carry us through! KEEP THEM COMING! GOD ANSWERS PRAYERS! I KNOW!
NOW GO HUG YOUR KIDS!
Madi’s Daddy
P.S. Please remember these people who are in need of your prayers:
The Hendrix family. Little Madison Hendrix lost her battle with ALL on Tuesday, July 29th. She was only 18-months old. Our hearts are just broken for Terry and Debbie. We felt such a bond with this family and we pray God’s grace will be with them as they deal with the loss of their beautiful Madison.
Alex www.alexupdate.com had her transplant in April and was able to go back to WA a couple of weeks ago, however, she was admitted to the PICU at Childrens Seattle on Monday afternoon as a precautionary measure, after spiking a fever and experiencing low blood pressure. Her fever is down and she is responding to the medication they are treating her with. Please pray that she continues to do well and that she will be out of PICU in a day or two and be moved to a HEM/ONC room.
Tommy www.caringbridge.org/ca/bennettboys is 3 years old and he has Sanfilippo Syndrome, also called MPS-III. He has already undergone 2 umbilical cord blood transplants. He does have some donor cells from his previous transplant and in a few days they will know if he will need a 3rd transplant. Please pray for his cells to GROW GROW GROW! Tommy has a sister, Ciara, 7 years old, and a brother, Hunter, 5 years old, and they also have Sanfilippo Syndrome. Unfortunately, they are not eligible for transplant because too much damage has already been done to their bodies. Sanfilippo children usually don't live past the age of 10-13 years old.
Ignacio’s Family www.caringbridge.org/nc/ignacio Ignacio was transplanted in June and on Saturday, July 26th, he too ended his battle with ALL. Please pray that God will give them strength.
Brandyn www.caringbridge.org/ca/kingbrandyn has relapsed again and his Bone Marrow Transplant is postponed until he is back in remission.
Manny www.caringbridge.org/sc/mannymiramontes battling Adrenoleukodystrophy and his family is dealing with the news that Manny has lost all of his sight and most of his hearing.
Noah www.caringbridge.org/hi/noah is an adorable little 10-month old fighting Krabbe’s Disease. His parents are so strong in their faith and are an incredible example to us.
Madi’s Uncle Harvey who was diagnosed with cancer
Cindy Lougee recently diagnosed with CML
Nolan www.caringbridge.org/co/nolanramsey is being treated for Hurler Syndrome and also had his transplant in April. Please pray that things continue to go well for Nolan here at Duke and that he will be released to go back to Colorado next week.
Brandon www.caringbridge.org/ca/ourbrandon is another friend from Kaiser at home.
Jeremiah www.caringbridge.org/ia/jeremiah is also battling Adrenoleukodystrophy. He made it home to Iowa this weekend.
Jillian’s family www.caringbridge.org/fl/jillian Jillian’s battle against ALL ended on July 8th. Their family is a real inspiration to us.
Alexander and Oliver are both at home, They are doing FANTASTIC!!! Last Thursday Alexander was up to 6 pounds and Oliver is 5+! Both of the boys have lots of "awake time" and love to look at each other! They instantly smile when they see each other!
David St. Pierre who was diagnosed with cancer
Jessica www.geocities.com/barbiegirljessica2003 is a young girl who visits Madi’s sight often and leaves encouraging messages. She asked for our prayers as she was waiting for some test results from her doctors and those results have come back that she is doing great.
Sunday, July 27, 2003 0:24 AM CDT Day Transplant +87 / Day Stem Cell Boost +4
Hi everyone!
This morning we were supposed to drive to Asheville to spend the night with the Thomas’ and bring Mikey back home with us. (Mikey has been there for the week attending a summer day camp with Matthew, Andrew, and Stephanie Thomas.) At 8:00 a.m. Marian and I were packing for the trip when Madi woke up complaining that her tummy hurt. To be safe, we took her temperature. It was 100.8. We called the clinic and decided to give Madi some time to see if the temp would drop to normal. By 10:00 a.m. it had risen to 101.7. A call to Dr. K confirmed what we already knew. We weren’t going to Asheville.
We headed to the clinic for lab draws, cultures, and antibiotics. The lab results showed that her platelet counts had dropped. She was given two antibiotics, to attack whatever was causing the fever, and a platelet transfusion.
Tomorrow, since the lab results also showed that her white count has risen, Madi will be getting her first dose of Mylotarg. It’ll be another long day at the clinic.
By 5:30 p.m. Mommy and Madi were home and I was on my way to pick up Mikey. Scott and I had decided to meet half way since the trip to Asheville is about a 3-3 1/2 hour drive. We met in Winston/Salem, transfered Mikey and his stuff, and headed back to our homes.
Mikey and Madi were very glad to see each other. They gave one another hugs and kisses and Mikey told Madi all about his week at camp with Matthew, Andrew, and Stephanie. He really had a great time! Thanks Scott and Barbara!
Time is elusive. If you don’t pay attention it just slips by. And when the day is gone, it’s gone! I’ve heard it said that “life is what happens while you’re making other plans”. Pay attention! Live every moment! Be flexible!
AND GO HUG YOUR KIDS!
Madi’s Daddy
P.S. Please remember these people who are in need of your prayers:
Madison Hendrix is an 18-month old little girl who was just transferred to PICU on Sunday from the transplant unit. She also has ALL and was admitted right after Madi was released. She was even staying in the same room on the transplant unit that our Madison was in. She is having complications with her kidneys, liver and lungs and has now been started on dialysis. Her parents just moved into the same apartment complex we are in.
Brandyn www.caringbridge.org/ca/kingbrandyn has relapsed again and his Bone Marrow Transplant is postponed until he is back in remission.
Manny www.caringbridge.org/sc/mannymiramontes battling Adrenoleukodystrophy and his family is dealing with the news that Manny has lost all of his sight and most of his hearing.
Noah www.caringbridge.org/hi/noah is an adorable little 10-month old fighting Krabbe’s Disease. His parents are so strong in their faith and are an incredible example to us.
Madi’s Uncle Harvey who was diagnosed with cancer
Cindy Lougee recently diagnosed with CML
Alex www.alexupdate.com is doing well at home in WA after her transplant in April
Nolan www.caringbridge.org/co/nolanramsey being treated for Hurler Syndrome
Brandon www.caringbridge.org/ca/ourbrandon another friend from Kaiser at home
Jeremiah www.caringbridge.org/ia/jeremiah also battling Adrenoleukodystrophy is scheduled to go home this Sunday, but they have a long road ahead of them.
Jillian’s family www.caringbridge.org/fl/jillian Jillian’s battle against ALL ended on July 8th. Their family is a real inspiration to us.
Alexander and Oliver are two surviving boys from triplets born last month. They have been able to go home from the hospital.
David St. Pierre who was diagnosed with cancer
Jessica www.geocities.com/barbiegirljessica2003 is a young girl who visits Madi’s sight often and leaves encouraging messages. She asked for our prayers as she was waiting for some test results from her doctors and those results have come back that she is doing great.
Thursday, July 24, 2003 1:52 PM CDT Day Transplant +85 / Day Stem Cell Boost +2
Hi everyone!
Madi received her Stem Cell Boost on Tuesday at the clinic, along with her scheduled IVIG and a platelet transfusion. They gave her a double dose of Benadryl so she slept for about 4 hours and when she woke up, everything was done and she wanted pizza, so of course, she got some!
Her counts from yesterday and today have shown that her blasts are increasing and her WBC is also going up. We’re taking her in to the clinic this afternoon for a blood transfusion. Tomorrow they are planning to start her Myletarg treatment. Myletarg is the drug that should attack the CD33 marker on her leukemia cells. The down-side of Myletarg is that it will make her neutropenic. (Her ability to fight off infections will be compromised even more than usual.)
Last weekend we had some friends, Scott and Barb Thomas, and their three kids, Stephanie, Matthew and Andrew, come for a visit. They ended up taking Mikey back to Asheville (about 3 ˝ hours away) with them for the week. Their church is doing a special day camp and Mikey is having a blast! We plan to make the trip to Asheville on Saturday and spend the night with the Thomas’ and then bring Mikey back with us on Sunday. As usual, this will depend on how Madi is doing. It has been too quiet around here without Mikey and we’re looking forward to him coming back home.
The picture on the front of Madi’s web site is of Madi and Stephanie in their new matching shorts. Madi thinks Stephanie is pretty cool.
Madi has been doing awesome through this entire process and, as usual, shows no outward signs that anything is wrong. She is her typical happy-go-lucky, teasing, playful self and this week she has decided that it is time to start using the ‘big-girl’ potty. We picked up a potty seat and some Minnie Mouse pull-ups for her. Every time she uses the potty she gets a sticker and she’s really doing well. She is very excited about the whole process. She is becoming such a big girl.
Madi is talking up a storm. We don’t always know exactly what she’s saying, but she’s good at getting her point across. She’ll ask us, “Where’s Mikey?” and to make sure we understood what she said, we’ll repeat back, “Where’s Mikey?” She’ll look at us puzzled, shrug and say, “I don’t know!”
Madi is constantly singing, running around the house, or asking to go to the pool. She likes to put her shoes on all by herself and changes them numerous times throughout the day. Fortunately “Little Amelda” has about 15 pairs of shoes from which to choose. With as active as Madi is, it is difficult to believe that such a battle is going on inside of her. She is one tough little princess and we are sure proud of her.
Thank you again for your cards, emails, thoughts and prayers. They mean the world to us.
GO HUG YOUR KIDS!
Madi’s Daddy
P.S. Please remember these people who are in need of your prayers:
Madison Hendrix is an 18-month old little girl who was just transferred to PICU on Sunday from the transplant unit. She also has ALL and was admitted right after Madi was released. She was even staying in the same room on the transplant unit that our Madison was in. She is having complications with her kidneys, liver and lungs and has now been started on dialysis. Her parents just moved into the same apartment complex we are in.
Brandyn www.caringbridge.org/ca/kingbrandyn has relapsed again and his Bone Marrow Transplant is postponed until he is back in remission.
Manny www.caringbridge.org/sc/mannymiramontes battling Adrenoleukodystrophy and his family is dealing with the news that Manny has lost all of his sight and most of his hearing.
Noah www.caringbridge.org/hi/noah is an adorable little 10-month old fighting Krabbe’s Disease. His parents are so strong in their faith and are an incredible example to us.
Madi’s Uncle Harvey who was diagnosed with cancer
Cindy Lougee recently diagnosed with CML
Alex www.alexupdate.com is doing well at home in WA after her transplant in April
Nolan www.caringbridge.org/co/nolanramsey being treated for Hurler Syndrome
Brandon www.caringbridge.org/ca/ourbrandon another friend from Kaiser at home
Jeremiah www.caringbridge.org/ia/jeremiah also battling Adrenoleukodystrophy is scheduled to go home this Sunday, but they have a long road ahead of them.
Jillian’s family www.caringbridge.org/fl/jillian Jillian’s battle against ALL ended on July 8th. Their family is a real inspiration to us.
Alexander and Oliver are two surviving boys from triplets born last month. They have been able to go home from the hospital.
David St. Pierre who was diagnosed with cancer
Jessica www.geocities.com/barbiegirljessica2003 is a young girl who visits Madi’s sight often and leaves encouraging messages. She asked for our prayers as she was waiting for some test results from her doctors and those results have come back that she is doing great.
Thursday, July 17, 2003 0:25 AM CDT DAY T+78
Hello everyone!
Here’s the latest information on Madi’s recovery! We are still in the “wait and see” mode. They are monitoring her blood counts on a daily basis for the rest of the week. If her ANC drops below a certain point they will give her the first dose of Mylotarg to attack the cells with the CD33 marker. The second dose will follow in another one or two weeks.
Madi will also be given an additional donor cell “boost” some time next week. The goal is that the combination of stopping the Cyclosporine and the additional donor cells will overcome the bad cells that remain. The absence of the Cyclosporine, however, puts her at a greater risk of Graft vs. Host disease. As usual Madi shows no sign that anything is wrong! She is a tough little princess!
Thank you for all of your thoughts and prayers. We will keep the information updated as often as possible.
GO HUG YOUR KIDS!
Madi’s Daddy
P.S. Please remember these people in your prayers:
Madi’s Uncle Harvey who was diagnosed with cancer
Cindy Lougee recently diagnosed with CML
Madison Hendrix 17-month old currently on transplant unit with iALL
Alex www.alexupdate.com just left NC for home in WA after her transplant in April
Nolan www.caringbridge.org/co/nolanramsey being treated for Hurler Syndrome
Brandyn www.caringbridge.org/ca/kingbrandyn soon to undergo Bone Marrow Transplant
Brandon www.caringbridge.org/ca/ourbrandon another friend from Kaiser at home
Manny www.caringbridge.org/sc/mannymiramontes battling Adrenoleukodystrophy
Jeremiah www.caringbridge.org/ia/jeremiah also battling Adrenoleukodystrophy
Jillian’s family www.caringbridge.org/fl/jillian Jillian’s battle against ALL ended on July 8th
Alexander and Oliver are two surviving boys from triplets born last month.
David St. Pierre who was diagnosed with cancer
Jessica www.barbiegirljessica@netzero.com
Sunday, July 13, 2003 5:48 PM CDT DAY T 74
Hello everyone!
We talked to Dr. Kurtzberg on Friday 7/11/03. The test to identify certain protein markers on the bad cells came back. Of the three possible markers, one (called CD33) was identified. The cells bearing these markers can be attacked specifically. It’s like being able to “lock on” to the targeted cells. There are a lot of the identified “marked” cells and the treatment for this marker can be very effective.
For now, we will wait and watch Madi’s counts and see if the donor cells will be able to take out the bad cells on their own since they have been set free from their cyclosporine “leash”. We are doing lab tests daily. As long as there aren’t any drastic jumps or drops we will let the donor cells go for it.
We cherish every day with Madi. She is an absolute joy. She inspires us with her unending ability to bounce back from everything that this disease throws at her. Mikey, Mommy and Daddy are constantly showered with hugs and kisses. She wakes up in the morning with a smile on her face and a kiss for anyone within reach and that attitude carries on through the day. In fact, sometimes, even in the middle of the night, we’re woken up by her kisses on our cheeks or our arms. She is unbelievably affectionate and we love every minute of it.
I’ve been asked on many occasions how I can deal with this whole situation. Madi helps me! I can feel God’s leading in each step and decision we have made. I can feel the thoughts and prayers from each of you. And I have Marian. She is amazing.
Madi’s life has caused us to reconsider our priorities. What are the most important things in your life? I recommend that you give that some real thought. Life can throw a curve. And you need to know what really matters.
Keep the thoughts and prayers coming!!
And go hug your kids!
I love you all!
Madi’s Daddy
P.S. Please remember these people in your prayers:
Madi’s Uncle Harvey who was diagnosed with cancer
Cindy Lougee recently diagnosed with CML
Madison Hendrix 17-month old currently on transplant unit with iALL
Alex www.alexupdate.com just left NC for home in WA after her transplant in April
Nolan www.caringbridge.org/co/nolanramsey being treated for Hurler Syndrome
Brandyn www.caringbridge.org/ca/kingbrandyn soon to undergo Bone Marrow Transplant
Brandon www.caringbridge.org/ca/ourbrandon another friend from Kaiser at home
Manny www.caringbridge.org/sc/mannymiramontes battling Adrenoleukodystrophy
Jeremiah www.caringbridge.org/ia/jeremiah also battling Adrenoleukodystrophy
Jillian’s family www.caringbridge.org/fl/jillian Jillian’s battle against ALL ended on July 8th
Alexander and Oliver are two surviving boys from triplets born last month. They are up to 4lbs. 8oz. and 4lbs. 3oz. and hope to go home from the hospital soon.
Friday, July 11, 2003 11:39 AM CDT DAY T 72
Hello everybody!
On Tuesday, 7/8/03, Madi’s blood work came back with some “suspicious looking” cells so the lab asked Dr. Kurtzberg to come take a look at the slide. She told me that the cells looked funny, but she couldn’t say with certainty whether they were immature cells or leukemia cells. She had blood drawn to do a FISH test. This test determines how many cells are boy cells (the donor cells) and how many are girl cells (Madi’s original cells). She said that the results would be in on Friday. If the test showed 100 onor cells, then the odd looking cells were just immature and not leukemia. To be safe, she discontinued the cyclosporine to give the donor cells a better chance at fighting the bad cells. The cyclosporine is the medication she has been taking to reduce the effects of Graft vs. Host (GvH), however by eliminating this medication it gives the donor cells a chance to more effectively fight the leukemia cells. This is called Graft vs. Leukemia (GvL).
Madi needed a platelet transfusion on Thursday, and while we were there Dr. Szabolcs came to tell me the donor cells were down to 17 nd the original girl cells were back up to 83 The good news is that the white cell count is still low, which means that the donor cells are doing battle with the leukemia cells. He said that Dr. Kurtzberg wanted to talk to us about what we would do next.
At about 7:00 Thursday night we talked to Dr. Kurtzberg. She told us that the leukemia was back but that there are still some things that can be done. We are doing another blood test to identify specific markers on the bad cells. Then Madi will be given a treatment that targets the cells with these specific markers. The treatment will be done outpatient and will not effect her adversely. We should have the results of this test today and then we’ll have a better idea of what options exist. Dr. K said that she is “cautiously optimistic.”
These new developments are disappointing, but Madi is still a strong, happy, playful little princess. She still has a good chance to beat this disease. We are once again asking for your prayers for Madison and for all of us. Please pray that God will guide the doctors in their decisions for her treatment.
We believe that God opened the door for us to bring Madi here to Duke and we are extremely thankful for the special time we have been able to spend as a family here. We consider every day we have with Madi as a bonus day. We have felt that God is leading us through every step of Madi’s treatment, and we trust He will continue to lead us.
GO HUG YOUR KIDS!
Thank you for all of your thoughts and prayers.
Madi’s Daddy
P.S. Please remember these people in your prayers:
Madi’s Uncle Harvey who was diagnosed with cancer
Cindy Lougee who was diagnosed with CML
Madison Hendrix currently on transplant unit with iALL
Alex www.alexupdate.com just left NC for home after her transplant in April
Nolan www.caringbridge.org/co/nolanramsey being treated for Hurler Syndrome
Brandyn www.caringbridge.org/ca/kingbrandyn soon to undergo Bone Marrow Transplant
Brandon www.caringbridge.org/ca/ourbrandon another friend from Kaiser at home
Manny www.caringbridge.org/sc/mannymiramontes battling Adrenoleukodystrophy
Jeremiah www.caringbridge.org/ia/jeremiah also battling Adrenoleukodystrophy
Jillian’s family www.caringbridge.org/fl/jillian Jillian’s battle against ALL ended on July 8th
Saturday, July 5, 2003 7:36 PM CDT
DAY T+66
Hey everyone!
Happy fifth of July!
The fourth of July found us sleeping in after a long night. Madi got a dose of G-CSF (the med that stimulates white blood cell growth) on Wednesday night with no side effects, but the next dose on Thursday night was a different story. At bedtime (9:00 p.m.) we gave Madi her meds. About an hour later she woke up crying. The G-CSF was causing bone pain in her legs again. We gave her some pain medication and at about 3:30 a.m. she was asleep again. She slept until about 8:30 a.m. and woke up crying again. Some Tylenol and by 10:30, she was asleep again, this time ‘till about 5:00 p.m. This gave Mom some time to play with Mikey on the Video games and do his school work, while Daddy napped with Madi. Then Mom took a turn napping with the princess while Mikey and Daddy went to the pool.
Madi woke up at about 5:00 p.m., like nothing had ever happened, just in time to get dressed and run over to little Nolan’s house for a Fourth of July dinner celebration. Dinner was fabulous and the kids had fun playing together. Alex was there with her family and Jeremia’s mom was there, too. We were having such fun that we actually missed the fireworks show! Oh well!
This morning I ran Madi’s blood samples to the lab and this afternoon Mommy took Madi to the patio to play in her pool, and I took Mikey to the big pool. The weather was beautiful and the water was just right.
I thank God every day for the miracle He has given to Madi and her family. We are truly blessed.
The house sold, escrow closed, and we paid off all of our bills. We are now debt free and “homeless” and our future couldn’t be brighter! We are excited about coming home to California and getting started fresh!
Thank you for all of your thoughts and prayers! We know that our faith is what has sustained us.
Hug your kids!!
Madi’s Daddy
Friday, June 27, 2003 6:30 PM CDT Madison Renee Mitchem – Update #69 – June 22-27, 2003
Hi to all of Madi’s Family and Friends!
June 22 - Things are still hopping around here but not at the frantic pace of the first two months. Madi passed day 50 (the halfway point) on Thursday and we went out to celebrate at a lovely restaurant where we were seated in their dining room – alone. We’ve found a lot of places will make special arrangements for kids in Madi’s situation if you ask them. It helped that it wasn’t a weekend. And there are many places that have patios where the exposure to other people is greatly reduced. On the patio, Madi and her little friend, Alex, don’t have to wear their masks. Just while walking through the restaurants.
We were supposed to meet Alex and her folks to feed the ducks again today but Madi had a tough night and it was a beautiful day at the pool so Mikey and I went swimming. Mikey knows the difference between swimming the length of the pool and doing laps. He can even tell you how many lengths one would have to swim to accomplish a certain number of laps. We’re up to 3 laps (6 lengths) right now and I’m hoping we’ll get him up to 6 or 8 by next week, weather permitting.
Poor little Madi is adjusting to the changes in her medications. By in large, she acts perfectly normally. Occasionally, she seems to experience some discomfort in her joints or even in her bones. Last night, she went right to sleep then a couple of hours later she woke up whimpering and cried almost constantly for about 2 hours. So did we. Finally the Tylenol kicked in and she slept pretty much all night. This morning she woke up early to go to the clinic. Her blood work is normal for her right now and she seemed to have a great day until late this afternoon when she started complaining of pain in her legs again.
Apparently, one of the side effects of the G-CSF (Neupogen) that stimulates the white cells also causes them to fill up those little bones and that can cause discomfort until she gets used to it and absorbs the extra cells that cause the pressure.
Today is June 25. Mike put a message on the website so I have waited a couple of days in order to let you know what’s happened since those couple of tough nights. The doctors prescribed some Tylenol with Codeine that she took once. Since then, she hasn’t needed it. Madi is getting a kick out of going out to the pool late in the afternoon when the sun is almost gone. It’s been in the 90’s the past couple of days with little humidity so it’s been just lovely out there. She’s gotten to dangle her feet and seems to really enjoy being outside.
The Little Princess is developing quite a vocabulary. She has also begun stringing several words together, most of which can be readily understood. Occasionally there is the, “I eat,” sentence. Or the ever popular, “I want cheese.” But now and then she’ll say, “I want to go to the pool and I want to wear my new bikini and my new shoes!” It’s all beginning to be quite clear. Too soon, she will be able to articulate a lot of stuff I’m not sure any of us are prepared to hear. Oh, well…I guess that’s what this is all about. Getting her home to grow up and tell everyone just what she thinks. Particularly around the time she gets her driver’s license…
Several times a day there is the, “Who loves you the most?” discussion. This is usually initiated by Daddy and the response from Madison is usually, “Mommy does.” Mike says, “No, Daddy does!” Madi says, “No Mommy does!” Then Mike says, “NO DADDY DOES!!” And, Madi replies, “NO MOMMY DOES!!” This can go on several times. Recently, however, after the initial couple of times, when Mike says it deeply and with authority, Madi just says, “O-tay,” in a very passive voice as if she no longer wants to argue with him. He is bigger you know. It’s still pretty cute.
I’m still flying home next Tuesday, July 1st. Yesterday, Mike and Marian did a trial run at the clinic with Mikey. No problem. And, even if something came up, they’re so good at switching off and taking care of one child or another or both, they’d do whatever they needed to do without a great deal of angst. When they got home, Mike took Mikey to the movies. They saw the new cartoon ‘Finding Nemo.’ Mikey loved it.
Wednesday, June 25th, we got a visit from Alex and Nick for a couple of hours then Mikey and I got in some pool time while Marian & Mike took Madi for a ride while the Orkin man came by and sprayed. (We’re seeing a bunch of little spiders and the Orkin man was scheduled to do the entire complex today anyway.) Then, we took Madi to the pool for a little while after the sun was almost down. It was another great day!
Madi and her family’s best buddy, Michelle, is still in this for the 100 days and would come over to sit with Mikey if necessary, or to do laundry or get a pizza or whatever they might need. So, it’s time for me to go home and see if we can get them a place to live for a few months until they decide where to move next. They’ll want to be close to Kaiser, Fontana, who will be overseeing Madi’s follow-up care. And, they’ll still want to be close to Mom in Lake Elsinore. But, so much has happened in the past couple of months, it’s hard to think long-term yet. We’re just so very glad that it looks like they get to bring Madi home and keep her for a very long time!
What a miracle we are witnessing. I’ll be sad to leave them all here and go back to waiting for the updates on the website or the phone calls – just like everyone else. I thank God to have been able to be here when Madi and her family needed to be together.
Hope to keep the information flowing. At least my computer at home is lots faster. Maybe, since they’ve sold their house, Mike will get a new laptop that can process the pictures a lot faster. Now that they’ve used Bruce’s old one and know what laptops can really do, they’re ready to move up to a newer model with more bells and whistles. And who knows what’s next, a guy came over to take a picture of Madison in her hula skirt by the pool the other day with his phone!
Love and hugs and thanks for the positive energy that will bring the Princess home,
Madi’s Aunt Linda
6/27/03 As Rosanne Rosanna Danna might say, “It’s always something.” Last night, after we got back from dinner, Madi and Mikey were playing with some new pool toys in the living room. The Princess dove for a lightweight water bomb ball toy that had rolled under the coffee table. She bonked her face into that table so hard her eye started turning black and blue within a couple of minutes. Poor little thing had just finished receiving her evening meds, one of which is mixed into a little Benadryl and may have contributed to her being a little less stable than usual. She cried for a while, then she started pointing to her legs like she did the last time she had G-CSF. So, after she cried for a couple of hours, Mike and Marian took her to the hospital where they helped manage her pain and CT scanned her and x-rayed her until 4:00 this afternoon, 14 hours after she bonked herself. She’ll be fine but the pictures from today on will look like she’s been beaten with a 2x4 for a couple of weeks. Mommy and Daddy need sleep in the worst way, but everything else is O.K.
Love, Linda
Monday, June 23, 2003 11:48 PM CDT DAY T 54
Hi y’all!! (sorry…couldn’t resist!)
Madi’s doing great! We have had a couple of “tough” nights, though. She seems to be having some pain in her legs at night. About an hour after she gets to sleep she would wake up crying and continue for an hour or two. I mentioned this to the nurse practitioner after the first night and she said it was most likely a reaction to the medication that stimulates the white cell growth. It can cause bone pain. Today, after the second night, she gave us a prescription for Tylenol with Codeine in case the pain persisted. After her nap today she started to complain again and, sure enough, the Tylenol w/Codeine did the trick! Thank God!
Yesterday was fun! I bought Madi a little blow-up pool and she got to play in it on the patio. She truly is a “water baby” and wants to go into the big pool with her brother.
Well, today we all went to the big pool. The weather was beautiful and the kids had a blast! (We'll have some pictures of this in the photo album in a couple of days.) I carried Madi in the pool so her “tubies” wouldn’t get wet and Mikey jumped and splashed and swam around. He’s become quite the swimmer, very much like his big brother, Matt. Every single day either he or Madi ask to go to the pool. We can’t mention the word, or even spell it (yes, Madi knows what p-o-o-l spells!) without them begging to go for a swim!
Tomorrow is Madi’s weekly visit with the doctor and with a little luck she may get her visits to the clinic changed from three days a week to two. She’s doing so well. God has really blessed us.
Thank you for all of your prayers and support.
Madi’s Daddy
Wednesday, June 18, 2003 9:55 PM CDT Post Transplant Day 49
Madison Renee Mitchem – Update #68 – Wednesday, June 18, 2003
Hey Everybody,
Tuesdays are getting to be the biggest day of the week for Madi. Tuesday is when she sees her primary doctor and the decisions of what to do for the next week are made. Yesterday, they decided to lower her dose of the steroid she takes, Solumedrol, and they changed the anti graft-vs-host disease medication (Cyclosporin) from an IV medication to an oral one. They also reduced the amount of Neurontin she is getting and by next week they will eliminate that completely. They are reducing the dose of G-CSF (the medication that artificially increases her white blood cell count) from every day to every other day.
And, in another day or so, she’ll complete her 2 week round of antibiotics which they’ve been running twice a day and alternating ports so she gets a dose of antibiotic in each port every other day. Once she completes that, the time she spends having her ‘tubies’ connected will decrease from 2 hours to about 10 minutes in the evening, and nothing in the morning but having her blood drawn a couple of times a week. When the ‘tubies’ are disconnected, Madi has taken up throwing her hands into the air and running around the room exclaiming, “Free, I’m free!!”
Tuesday morning, before they left for the clinic, Mikey and I were still in bed but I heard Madi sitting on the counter in the kitchen practicing her animal sounds. She was saying, “’Arf-‘arf, meow, mooooo.” Then she made the cock-a-doodle-do sound, the monkey sound, and the pig sound, which she can’t do yet so it just sounds like she’s having trouble breathing. Then, she made a roaring noise like a baby tiger/bear/lion/monster. Finally she said, “Peep, peep, peep.” Then she did it all again.
Madi laughs a lot and runs and dances with joy. She calls me, “Yee.” And, whenever she does, I ask her what color she wants that Porsche to be or which pony has she picked out or if she wants to attend Harvard, Yale, or Duke. She wants to be a ballerina and loves the color yellow and likes to be read to. Madi even gets a kick out of playing with Mikey when he lets her. They are pretty fun to watch except when they wind each other up so much we worry for their safety. It is a small apartment. It feels big because the ceilings are high but, the coffee table isn’t far from the couch and the counter top on the kitchen island is just at the ‘bonk your head’ level for Mikey.
Life is good. We all like lots of pasta and Madi has taken to the American Cheese Slices in lieu of cheddar because the slices aren’t made from real milk anyway so they don’t challenge her system with lactose. She does get a little bent out of shape if you don’t let her peel off the wrapper. And, oh joy, they told Mike and Marian they could start introducing Madi’s favorite food, cottage cheese, a couple of ounces at a time, every other day. It’s a start. Madi really misses cottage cheese.
On Father’s Day Mike got to grill some steaks for us and some friends whose daughter, Alex(andra), has only a few weeks left for her 100 days to be completed. She’s 5 and having her 2nd transplant. She’s so cute and likes hot dogs and Teddy Graham crackers. Her folks, Todd & Andrea, marinated some beautiful steaks and brought a delicious cheesecake. She also made a yummy creamed corn with real cream and butter. Can’t say we didn’t have the comfort food for the Daddy’s.
Mikey finally got to play on the computer in the kid’s room at the complex recreation facility. They replaced a monitor cable that has been missing since we got here. You can work out in the exercise room and still watch your child while they watch a video, color, read a book, or play a computer game. Marian took him over to play one of his favorites, but after getting it loaded, they found out the computer doesn’t have speakers. They still had fun.
I don’t know if it would make God mad or if it would confuse the weather issue because someone else might be praying for rain, but Mikey does pretty well when he gets a little exercise in the pool. And, we’ve had scattered thunder storms for 4 days. They don’t predict sunshine again for several more days.
Either we figure out how to exercise Mikey in the rain or he’ll be climbing the apartment walls. (Mommy and Daddy have expressly forbidden him to climb the furniture…) If only he could walk on the treadmill for a while or work out with Billy Blanks long enough to work up a sweat… Oh, well. At least he’s getting in some really excellent pre-school workbook time. Today, we practiced cutting out stuff and pasting it to other stuff. And, we did the letters W and X. He also knows Mike’s cell phone number. He’s had to learn it because his previous address and phone number in Lake Elsinore are no longer helpful.
It is really beautiful here and I think even Madison loves the gentle swaying of the trees in the breeze and the green grass and the wonderful puffy clouds. It’s sort of odd, though, when it’s raining in sheets like someone is pouring buckets of water on the roadway but it’s still 88 degrees. At home, that sort of rain would require a jacket and maybe a coat!
We’re doing great. The M’s are doing fine. I’m still planning to come home on July 1st and will miss them a ton just like everyone else. Meanwhile, they’re resting up so they can take over all the little chores Aunt Linda (alias ‘Clara Cleaning Lady’) has been doing. Even if they had to take Madi to the hospital for a night or two, one or the other parent would stay with Mikey and they’d just switch off like they did before. These guys middle name is ‘flexible’ and their children are ‘adaptable.’ I’m real proud of all of them.
Thanks for keeping the web site guest-book fun to read and for sending such positive messages there and to the email address. We love hearing from home – it’s so far away. Bless you all and hug each other for me.
Love,
Madi’s Aunt Linda
(Aka: ‘Yee’ – It’s better than when Mikey used to call me Ling-Ling)
Friday, June 13, 2003 2:08 PM CDT Post Transplant Day 44
Madison Renee Mitchem – Update #67 – Friday, June 13, 2003
Hey Everybody,
Madison’s nurse practitioner, Susan Wood, came into the clinic room yesterday waving Madi’s lab results and smiling. She told Mike, “Madi’s lab work is perfect!” All her numbers are where they are supposed to be and even the clinic staff are thrilled with her progress. This miracle just never ceases. And, for this, we are truly grateful.
Today and tomorrow are the last days Madi must attend clinic every day. Then, the plan is to go have her checked on Tuesdays, Thursdays and Saturdays for a while. Once she is stable at that level, they’ll just see her weekly until they complete the process on day 100. For those of you who have not done the math yet, that will be August 8th.
Right now, we’re just watching Madison get more and more active, more fun than a barrel of monkeys and with a vocabulary that is developing like lightening. She’s even trying to tell ‘Knock, Knock’ jokes except she doesn’t know what they are yet. But that doesn’t stop Mikey from telling them…
We thought you all should get a heads up on one of the side effects of the Cyclosporin. That is the drug that helps prevent graft-versus-host disease and she will be taking it every day for about a year. One of the common side effects includes “hair growth on the face (with long term use).” We are beginning to see the first signs of the darkening eyebrows already. Some of the pictures are starting to look like she has a bruise on her forehead, but it’s not, it’s just the dark hair growing in. Perhaps this will keep any of you from freaking out as you see this become more and more apparent in upcoming pictures. Madi hasn’t noticed anything yet, but we’ll have to see how she reacts as it becomes more and more prevalent. Some of the older kids (like the 5 year olds) have a real problem with it, but the Sugar Baby should be just fine!
I’m attaching the last two updates to this and getting them emailed out for those of you who cannot print or forward from the website. It seems we’re able to get a little more done each day. Hope we can get more of these out on a regular basis so you can see how well everybody is doing here. My work may soon be done. As these folks can take over the little chores like laundry and cooking and vacuuming without taking them away from care-giving, they’ll need me less and less. Meanwhile, I can keep a few of those things from causing stress, leaving Mike and Marian able to give lots of attention to their children. I’m sure their slightly lowered stress levels have a huge effect on Madison’s recovery – she doesn’t seem to be stressed out at all. Now that she doesn’t have that TPN running all night long, everybody is getting more sleep! No need to set the alarm every two hours to change the soggy diaper before the bed floats away… Hurray!
So, thank you for your prayers, cards and calls. Love to all of you from all of us,
Madi’s Aunt Linda
P.S. Mikey and Madi’s Great-Uncle Harvey (Papa’s brother), the fellow who just had major surgery, is facing other health challenges. Please put Uncle Harvey on your prayer lists.
Sunday, June 8, 2003 8:54 PM CDT Post Transplant Day 39
Madison Renee Mitchem – Update #66 – June 8, 2003
Hello Everyone,
Just getting a chance to let you know what’s happening around here. Each day is filled with hundreds of little details.
The IV medications are given with separate pumps, each one set up to deliver a certain amount of fluid at a certain rate per minute for a certain time period. Some medications run over a few minutes to a couple of hours, others run overnight.
Each evening, Madi sits on the table or on Aunt Linda’s lap while Mike and Marian hook up all four ports to different pumps. Caps are changed regularly and each line is flushed before and after the medication and receives a heparin flush to be sure they don’t clog up before the next use. Madi is a real trooper through the whole process and usually helps pick the correct colored line to attach the ‘tubies.’
Mike is the computer programmer for each of the pumps and gets the lines primed so they can be attached readily when Marian gets finished changing the caps and the flushing with the proper solution. (Most lines are flushed with normal saline however, it would crystallize the GCSF – otherwise known as Nupogen that helps Madi produce white blood cells - so that one port is flushed with dextrose water.)
Then, there are the oral medications. Madi gets 5 meds every morning and 3 each evening. These are delivered by using plastic syringes. Someone draws up the medication then shoves it into her little mouth. Some of the stuff actually gives her a full body shudder. She gets a drink of apple juice afterwards and is off again as if nothing has happened. She’s a real trooper. One of her meds is a pill that has to be cut in half and crushed then mixed with Benadryl. This involves sucking the mixture into a syringe and back into the medicine cup over and over again until it finally dissolves.
Every day Madison still has to have her dressing change done on her central lines. Now that there are two, it takes twice as many alcohol swabs, twice as many betadine swabs, twice as many steri-strips to hold the catheters in place, and a ton of 2”x2” gauze sponges. All this stuff is still tucked into the little tiny bras made ‘with love by Grandma Judi.’ And, this process usually occurs after Madi has had a few minutes in the tub or the sink to be sure her little booty is clean and she smells like a Princess not a pauper.
Also, each morning, when the pump beeps telling everybody Madi’s TPN has been delivered completely, Mike and Marian flush the lines, draw her morning blood samples and hook up her Cyclosporine pump which runs for another 2 hours. Mike jumps in the van and runs the blood samples up to the laboratory then comes back to the apartment to finish getting ready for the day. By that time, Marian has gotten Madi fed, diapered, and dressed. Then, one or both of them takes Madison to the clinic for her daily visit.
By that time, Mikey and I are up and working on cereal or egg sandwiches. Depending upon the lab results, the clinic visits have taken a couple of hours to most of the day. As often as possible, while Mommy & Daddy have gone to the clinic, Mikey & I go to the pool, weather permitting. Mikey is becoming quite the swimmer this summer.
Every day is different yet sometimes we can’t remember which day it is. We don’t get out much except to the grocery store to pick up some food. There is a Mexican restaurant that makes pretty good burritos and we sometimes call ahead and then go pick it up and take it home to eat. Otherwise, the van just goes back and forth to the clinic. And, there just aren’t enough hours in the day to get everything done. Suddenly, before you know it, it’s time to hook up Madi’s ‘tubies’ again and then it’s midnight…
Soon, the clinic visits will be only three days a week instead of seven. But right now, Madison’s condition could change in a moment. A couple of days ago, for example, (I think it was Thursday…) around 6:30 p.m., Madi’s temperature spiked to over 101 degrees. A phone call to the doctor had her back in the hospital for a couple of hours while they drew some blood to culture. They decided she did not need to be admitted for the night and put on antibiotics since they thought the fever may have been caused by one of the medications she received earlier that day at the clinic. Also, since she didn’t act like she felt ill and she was going back to the clinic in the morning again anyway, they said she could go home for the night and Mike and Marian should just keep an eye on her fever.
The next day, she still had an elevated temperature. The Nurse Practitioner said she looked like she might have the start of an ear infection in her right ear, so they gave her an IV push antibiotic and started her on an oral antibiotic she was to take twice a day for 14 days. At that point the results of the cultures were still coming back negative. However, Saturday morning at 7:45, Mike and Marian received a phone call from the doctor saying that the cultures had started developing some type of bacteria and they wanted to repeat the cultures on all four of her catheter lines. They gave her an antibiotic at the clinic on Saturday and started her on another IV antibiotic that Mike & Marian give her through another pump for about 30 minutes twice a day. None of this is totally unexpected.
Neither is the fact that she will continue to require the occasional unit of platelets and this morning she got a unit of Packed Red Blood Cells because her Hemoglobin count had dropped below 8.0 (it was actually 7.6). This morning, Marian dropped Mike and Madi off at the clinic and came back to get Mikey and I so we could hit the grocery store.
When Mike called and said they were finished, we went and picked them up, had some lunch and then took a sight seeing ride over to Raleigh. It’s real pretty. Madison is real pink and perky after that transfusion. She talked most of the way there and back again. She knows most of the animal sounds and is especially cute saying what the chicky says, “Peep, peep, peep, peep, peep!”
As well as her vocabulary, the little Princess is also developing a distinct self-awareness. Now and then, she will just break into a rendition of the birthday song. Of course, she sings, “Happy Birthday to ME…” She will also tell you, with one finger from each hand, that, “I’m two!!”
Probably the funniest thing she has said recently started when she sat down in her car seat by the sofa and tried to strap herself in. She couldn’t get the shoulder strap piece to go into the between the legs thing so she kept saying, “Push it! Push it!” However, the ‘pu’ part of push sounded like ‘buuu,’ and the ‘sh’ part kept sounding like it was part of ‘it.’ Thus, ‘push it’ came out ‘buuu sh it.’ We rolled on the floor laughing. Now, sometimes we just have to say, “Push it,” to get a good chuckle.
Mikey has been a real trooper too. The only problem we seem to be consistently having is that at some point during the afternoon, the regular cartoons turn into stuff you have to be 7 years old, or more, to watch. Mostly these are just a little violent. Some are crude and/or unattractive. Many have behavior that a 5 year old just shouldn’t see because no one wants a 5 year old getting a smart mouth. So, Mike is on his way to pick up a couple of new Bob the Builder and Wiggles movies in case Mikey is left to his own devices while dressing changes are going on or we’re making dinner or something… We’re all convinced, as is the hospital staff, that having Mikey around keeps Madi on the road to a speedy recovery. His energy is infectious and Madi doesn’t want to miss anything. He’s also assisting her in developing her vocabulary. He asks her about those animal sounds and sings Wiggles songs with her.
Thanks to all of you for your prayers and for racking up the hits on Madi’s website. We found out first-hand that it’s not a good idea to keep a digital camera next to a device that generates an electromagnetic field – like a microwave. The most recent 100 pictures or so were suddenly wiped off the card the other day. There is a ton of video tape but that won’t fit on the website. So, we’re going to have to take more digital photos to download for you. Meanwhile, remember: No news is good news! Madi’s friend, Alex, a 5 ˝ year old adorable little girl who also had a recent stem cell transplant, and her family met the M’s for ice cream last weekend at an outdoor ice cream place, and Alex’s mom emailed us a few pictures from the event. Alex and her mom also met us for dinner when we went out to celebrate Madi having 100onor cells and they sent a couple of pictures of that as well. We’ll try to post a couple of those on the web site, and maybe even a couple from while she was still in the hospital.
Some of you should know you have filled the tank of the van and filled the refrigerator several times. Thanks!!! Everybody is hanging in there really well…mostly, we’re enjoying every bonus day we get to spend with the Sugar Baby. Madison Renee is a precious little gift. Hope you all get to see her soon!
Love,
The M’s Aunt Linda (who will be here for another month or so or however long they need me, thanks to several of you, especially Carol).
Monday, June 2, 2003 3:35 PM CDT POST TRANSPLANT DAY 33
Madison Renee Mitchem – Update #65 – Monday, June 2, 2003
GREAT NEWS: MADI’S WHITE CELLS ARE 100% BOY CELLS!! HERS ARE GONE, THEY ARE ALL THE NEWLY TRANSPLANTED CELLS!!! YEAH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
We all did the HAPPY DANCE when we got those results this morning. It means that 1/3 of the way through this process Madison’s transplant is progressing smoothly and as well as any of the doctors could want. The expectation is that when her blood type changes, that will be the other indicator that her transplanted cells are taking over the function her old (leukemia) cells used to do. They are excited she is eating so well and that she is responding to the medications as well as possible. She is being weaned off of some of the medications already. We are hoping that tomorrow (Tuesday) when she sees her primary physician, Dr. Kurtzberg, her numbers will be so good Dr. K will discontinue Madi’s TPN.
Once Madi is off the TPN, she’ll be able to sleep through the night without a diaper change every 90 minutes. That’s a lot of fluid for one little bladder and we’ve washed sheets every day for a week. Hope Madi and her folks can soon get a full uninterrupted nights sleep. I’m sure that will do as much for Madi’s healing as anything.
We think Mike & Marian have figured out the clinic thing. Mike drives Madi’s blood samples over to the hospital laboratory as soon as they draw them in the morning. Then, he comes back to the apartment to pick up Madison or to drive Madi and Marian back to the clinic. If they get there by 8:30 a.m., they are one of the first to arrive and are seen pretty quickly. If they don’t get there until 10:00 or later, it can be a 3-5 hour experience. However, we’ve heard of people arriving at 8:30 in the morning and being seen at 8:30 at night…
There have also been some kids who have had a transplant who have a lot of negative side effects. Some are quite serious. We can only thank God that Madison has had such a wonderful (miraculous even) recovery thus far. The doctors cannot say enough good things about Madi and her tough little body.
Marian only spent about 2 hours at the clinic this morning before she called and told Mike they were done and he could come pick them up. So, she and Mikey went out to play by the pool, I’m making butternut squash cubes because Madi ate almost all the Zucchini cubes I made yesterday, and Mike is taking a nap with the napping Madi.
Tonight, we’re going out for Italian food at our new favorite place, Maggiano’s. It’s the same restaurant Marian and I went on our birthdays, she for lunch on the 15th, I for dinner on the 20th. Marian heard from another transplant family that some restaurants in the area are willing to make special arrangements for families who have immune challenged members. We have reservations for 5:30 p.m. on the patio. It’s before their dinner rush and they’ll reserve that section for us until we are finished so Madi can eat too! Being so near Duke, the owners understand the need for people who are trapped here for at least 4 months to get some real food. That drive thru stuff gets pretty old…
Last night Mike & Marian took Mikey and Madi and met another family for dessert. They went to a place that serves frozen custard. If Madi will keep wearing a mask, the little family can go lots of places!
Thank you for praying “GROW CELLS GROW!” Please keep praying for an event free recovery as she is weaned off her medication and really starts taking over the process of building an immune system from scratch (O.K. from newborn umbilical boy cells). If only they weren’t worried about lactose intolerance, Madi really misses CHEESE!
Love and Hugs to you all,
Aunt Linda
Friday, May 30, 2003 11:45 PM CDT POST TRANSPLANT DAY 30
Here's a message from Madi's Mom, my sister, Marian. If you live near Palm Springs and can take a picture of any of these billboards, please send a copy to Mike & Marian for Madi's scrap book. How many two year olds are this famous?
Love, Madi's Aunt Linda
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Friday, May 30, 2003 Post Transplant Day 30
Hi everybody!
Just got the word that the billboards that the Leukemia and Lymphoma Society are using in the Inland Empire are now up in the Palm Springs area and they have Madi's picture on them. Below is a message from Gina at LLS regarding the locations of the billboards in case any of you are in the area any time in the near future. Looks like the Princess is getting more and more 'famous' all the time.
Madi did get released from the hospital on Tuesday and we are all enjoying having her 'home!!!’ It has been interesting learning how to do all of her meds on our own. She is hooked up to 4 different pumps in the evening, 2 of them that run all night, and then we do her blood draws in the morning and hook her up to a different pump for a couple more hours. It was almost more relaxing at the hospital when the nurses dealt with all this stuff...okay, NOT!!! It's well worth it! She is eating very well and we hope to get her off the TPN by the first part of next week. That will eliminate the 2 pumps that run all night and will make things much easier on all of us. Imagine a 2 year old that can only get 3 feet away from the pumps and who knows nothing about the concept of sitting still. We finally figured out a little trick. We put her pumps in a backpack and then put them inside of her baby's stroller so she can just push her pumps around and, Yeah, she's mobile again.
Today, Friday, is Madi's 30th day post transplant. It was a short day at the clinic. We were only there about 3 hours. She will continue to go to the clinic every day until day 45 post transplant, and then hopefully will go to 3 days per week.
Her white blood cell count today is 15.7 (ironically enough, now she's on the high end of the ideal reference range which is 3.8 to 14.0). They have her on a medication called Cyclosporine which helps to reduce the graph vs. host, and when her WBC gets up as high as 20.0, they will wean her off this medication which is currently helping to increase the WBC.
Wish we had more time to update the web site more often, but we just haven't gotten into enough of a routine with Madison's new regimen to give us much extra time. When we aren't at the clinic or hooking up her meds, we're trying to spend some quality time with Mikey. Know you all understand.
Again, we have really enjoyed the email messages and guest book entries, and thank you to all of you for your continued prayers.
Love,
Madison's Mommy, Marian
----- Original Message -----
From: Kinard, Gina (Tri-County)
To: 'Mike and Marian Mitchem'
Sent: Thursday, May 29, 2003 6:33 PM
> Hello Marian,
> Madi looks like a little doll, I hope everything is going good for you guys.
> Here are the locations of the billboards with Madi on them, she is truly our
> little star. Thanks Gina
> 1-10, 2500 E/O Indian Ave., SL/WF PALM SPRINGS
> Gene Autry, 1600' N/O via Escuela, EL/SF PALM SPRINGS
> Hwy 111, 75' S/O 2nd St., EL/NF COACHELLA
> Indio Blvd., 200' W/O Arabia, SL/EF INDIO
> 1-10, 425' E/O Apex, NL/EF BANNING
> 1-10 490' W/O Sunset, SL/WF BANNING
> Hwy 62 & West Dr., NEC/WF MORONGO VALLEY
> Hwy 62, 75' E/O Hanford, SL/EF YUCCA VALLEY
> Let me know if you have any more questions. Thanks Gina
Monday, May 26, 2003 8:18 PM CDT DAY 26 Post Transplant
Madison Renee Mitchem – Update #64 – Monday, May 26, 2003
Hi Everybody!
It’s day 26 Post Transplant.
Madison is here right now! The little Princess got a 4 hour pass this afternoon so Mike & Marian decided to bring her back here to the apartment. Fortunately, Marian and I cleaned a bunch yesterday and today, most of the rest got done before they called and said they were coming home for a practice run. Yesterday and the day before, Madi has been unhooked from her IV tubing for a couple of hours and was allowed to leave the room. Walking outside appeared to be a great pleasure for her. Madi finally consented to put on a mask a couple of days ago which qualified her to go outside her room and play.
That White Blood Cell Count has gone from few to very many in just a week. Today, Madi’s WBC was 11.3! (Normal range is 3.4 to 14.0) The ANC (Absolute Neutrophil Count) is a figure that is calculated from some of the other information that can be obtained when a Complete Blood Count is done. For example, the ANC in California was a factor of the % of neutrophils times the WBC. Here, at Duke, they calculate it differently using other numbers multiplied by the WBC. Either way, it is an indication of Madi’s ‘Neutropenic State’ or the degree of immune function or immune suppression that exists. If the ANC gets too low, we know she is not able to fight infection because her immune system is impaired. The higher her ANC, the more able her system is to fight off germs.
I know you all want to know when they are going to test Madison’s white cells to see if they are hers or his (the new cells). The answer is: I’m not sure. The best guess we’ve gotten from the nurses and one of her doctors is that they’ll wait until she has been making a ton of white cells for about 30 days. Depending on who decides how many are in a ton, that’s when they start counting to 30. We’ll probably know in a few days, maybe. This is the stuff that gets a little fuzzy. It’s different for every little kid and no one wants to disappoint a couple of parents who’ve been hanging tough for so many weeks. It seems to be better to just let it hang out there as something we’ll do later…
The Sugar Baby is still immune depressed, in fact she gets medication to keep her immune system from coming back before the new cells get a chance to come in first. But Madi is playing as if nothing ever happened. And, tomorrow she gets to come home. Of course, there will be many days at the clinic. Every day until Post-Transplant Day 45. Then the clinic visits will decrease to several days a week for a few weeks and then weekly until day 100. There is a reason they keep these kids that long. Many of them develop some thing or another and it often occurs on day 97 or 98…
Depending upon how it goes between now and then, she may get to leave North Carolina after day 100. That is our prayer now. Meanwhile, Madi and her family have been truly blessed. Madi is still with us and it looks like she will be with us for a long, long time!
Please go to the website to see more pictures, we’re changing them every couple of days.
www.caringbridge.org/nc/princessmadison
Love and hugs to all of you,
The M’s Aunt Linda
Saturday, May 24, 2003 1:23 AM CDT POST TRANSPLANT DAY 23
Today’s WBC 3.4, (yesterday’s was 3.1)
Today’s ANC 2618 (yesterday’s was 2573)
Today, MADI WORE A MASK!
Mike and Marian and the nurses have been trying to get her to wear one for weeks but she just wouldn’t put one on. She just said, “No, no, no!” Earlier today, Mike got her to hold a mask up by her nose for a few seconds in order to get some chocolate milk.
When we got there this evening, Mike and Marian and Mikey went to the conference room to eat dinner. Nurse Lori and Nurse Karin and I put on masks and left one on the bed next to where Madison was standing, then we went out to the hall in front of her windows and threw a ball back and forth and danced and played. She went crazy and cried the big giant tears until we couldn’t stand it any more and went back in. We were such sissy’s, it only took about 20 seconds before the nurses were saying they hated their jobs and I was ready to give up being Auntie Linda. That was brutal.
However, about an hour later, when we were preparing to leave, Mike and Mikey and Nurse Lori and I put on masks and went to the hallway to play. Marian got a mask and started for the door and Madi, with the biggest lower lip in history stood next to the bed by her mask and started to cry. Mike said, “Madi, do you want to come out and play?” Finally, she said, “Yes.” So, we put a mask on her before she could change her mind and went out to play in the hall. She picked the cars she wanted to ride in and played basketball with Mikey and an 11 year old boy who has also had a transplant. Everybody got real sweaty except Madi. Then, she cried when we made her go back into that little room. She hasn’t been out of that room for over 3 weeks.
The princess is doing better every day and it won’t be long before that tiny space won’t be able to contain her. We can’t wait for her to come home.
Renee, don’t tell Shelley, but she was right. All that child psychology she’s so good at really paid off today. God Bless Shelley.
And, thanks to everybody who prayed for Madi and the Nasty Old Mask. This will make a huge difference in her going to the clinic every day. At least she knows she won’t die from wearing one.
Have a great Holiday weekend and, please, keep those positive waves of energy coming to North Carolina. This is a very important time for Madi and her new blood cells. The phrase on every child’s door is: GROW CELLS GROW!
Love, Madi’s Aunt Linda
Thursday, May 22, 2003 1:23 PM CDT DAY 22 Post Transplant
Hi Everyone,
Thank you for making my birthday a truly delightful event. I would like to respond personally to every email I received but it may take a few months...so, thanks everybody, you made Auntie Linda very happy. I am humbled by many of your sentiments and only wish I could do more than just try and be sure fairly accurate information gets disseminated to all the people who have fallen in love with Madison and her family, friends, and fans.
I am pleased to announce the numbers for the last two days...yesterday (Wednesday) Madi's WHITE CELL COUNT was 2.4 and today it is 3.1! And, her ANC was 1656 and is now 2573!! If she keeps this up, her doctor said she will probably be discharged next Tuesday, the day after Memorial Day.
Yesterday afternoon I earned my keep. Mikey and I went up to stay with Madison while Mommy waited in the Van outside for Daddy to come down. Then, they went on a date.
It was the first time Madi hadn't had one of her parents or the other within shouting distance since she was admitted on April 21st. My only concern was that I hadn't changed her diaper since her little bottom broke out, however, it has healed up so well that that wasn't even an issue.
So, the happy parents are planning to leave Auntie Linda with Madison this afternoon and take their son out for a good time. Mikey hasn't had a lot of time with both parents except in Madi's room for a really long time. It'll be interesting to hear how Mike and Marian's different parenting styles crash into the nephew/grandson/friend he has become since they left April 8th.
Today, Madison got a visit from Nate. He is 4 years old and is returning for his annual visit after his stem cell transplant 3 years ago. He and KoKo (Katherine) had their transplants around the same time. Marian said she didn't have a camera but that Nate's mom, Ingrid, took pictures and we will get them on the website as soon as we can.
As you can see, Madison is almost back to her old self again. She looks great and is playing as if nothing was ever wrong. What a warrior - her nurse even made her wrist bands and a head band out of the tape like stuff that sticks to itself. She looked like Xena. They use that stuff on her tubing to keep the tubes tied together so Madi only has to dance with one set of tubes at a time. Otherwise, she'd be tripping over tubes like crazy. Can't wait to get her home so she can be free.
Love and hugs to all of you from all of us,
Madi's Aunt Linda
Monday, May 19, 2003 9:49 AM CDT Hi Everybody, It's Mike. Following is Auntie Linda's email update but, since yesterday, Madi's numbers have improved so much, I just wanted to let you know. This morning, her white blood count was 1.5 (yesterday it was .5) and her ANC is up from 300 to 885! If she can maintain those numbers and doesn't have any adverse side effects, they may let her come home in 4-5 days!!
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Madison Renee Mitchem – Update #63 – Sunday, May 18, 2003
Hello Family and Friends,
Today is a beautiful day to be in North Carolina. It is raining, but Madison’s white blood cell count is up to .5 for the 2nd day in a row! Up from Friday’s .4 and the previous 3 days at .3. She is exhibiting all the expected symptoms and, except for the diaper rash on her little behind, she’s doing just great!
Marian stayed with Madi Friday night so Mike could come home and play with Mikey and sleep in a real bed. We spent Saturday afternoon hanging out and going for a little drive. Saturday night, we got dinner and took it over to the hospital and I played stickers with Madi and Mikey while Mommy and Daddy went to the family lounge and had a nice little dinner together (the first time they’ve had dinner together since Madi was admitted on April 21st). After they returned to Madi’s room, I got to hold Madi while she watched a little TV and then she fell asleep…right in my arms. Mike stayed with her last night while Marian came back to the apartment to play with Mikey and sleep in a real bed.
Madi is just getting better each day. What a blessing! Mike called this morning and said that Madi slept from the time I put her down when we left last night around 7:00 p.m. until almost 10 o’clock this morning! She’s making up for a week of lost sleep. So are Mommy and Daddy. (Mikey & I are just starting to acclimatize too.)
We’ll be heading back to the hospital here shortly to let Mommy and Daddy trade places again, and to give Mikey a chance to play with Madi for awhile. They say any exercise she gets in that little room is good. She still won’t go out into the hallway to play. They have lots of riding toys in the hall, tricycles, cars, and a tractor, but the kids have to wear a mask when they leave their rooms and Madison won’t put one on. We ask her if she wants to go out to play and she says, “Yes!” Then, when we hold up a mask for her to put on, she says, “No, no, no…” and walks away. Poor little baby, it may make for an interesting time when she tries to go home. They’re supposed to wear masks when they go to the clinic too. We’ll see what happens there.
Madi’s doctor suggested putting a blanket over her head in lieu of a mask and maybe she’ll decide a mask is a better option. The same doctor asked her to open her mouth and she did, immediately. That’s really something for a 2 year old. Dr. Kurtzberg commented that most 2 year old’s aren’t as cooperative, however, there are the occasional children who are mouth openers. The Princess will allow you to look in but not cover it up. Where is Dr. Freud when you need him?
Marian and I are just now starting to try and write a thank you card or two. Many of you have said not to bother, but it’s hard to cash a check without at least saying thanks for helping make this trip a little less difficult (and some of you have made it a lot less difficult). Until you hear from us in writing, please accept this from the bottom of our hearts, “Thank you!”
Be well and tell your family and friends how much they mean to you right now, while you can. Lots of hugs and prayers from us to you and thanks for thinking of us. The positive energy does transcend the miles.
Love,
Madi & Mikey’s Aunt Linda
By the way, don’t forget to check Madison’s website: caringbridge.org/nc/princessmadison
Mike and Marian (and me and every body else I’ve spoken with) love to see the pictures and read the latest messages from family, friends and total strangers who have gone to the website and checked it out. We’re copying this update to the ‘journal’ for the moment, not enough hours in the days to update everything as often as we would wish. The website only allows three pictures at a time (besides the front page that we’ll change as soon as we get a better picture than the Princess with attitude watching TV), so we’re trying to get some new ones on every couple of days. Hope to hear from you there.
Friday, May 16, 2003 10:22 AM CDT Hi everybody! This is Marian.
Madison is doing so much better than she was a few days ago. Her swelling has gone down some. Her little bootie is still very sore and she cries whenever she gets her diaper changed (almost every hour), but aside from that, she is happy and is up and playing most of the time. She has been playing with her Barbies alot, and asks us to put on the Wiggles for her, often at 1 or 2 in the morning. Sometimes we give in and put them on and then all of the nurses have to come and watch through the window while Madi plays her guitar and dances. (Did I mention this was at 2 A.M.?)
Amazingly, she is handling the pain very well. The Neurontin seems to be helping some...it at least seems to take the edge off. Other than that and an occasional dose of Tylenol or Benedryl, she is not receiving any other pain medication.
Seeing Mikey for a little while every day is great for Madison. She lights up when he walks in the room and he can make her giggle and laugh out loud like no one else can. (That can't be bad.) He's able to help her forget about what she is feeling, and it helps her get some additional exercise...she still wants to try to keep up and do whatever her big brother is doing. Wish you could have seen them both last night bouncing around the room wearing Tigger ears.
Some good news...her white blood cell count is up to .4 now!!! On Wednesday, Madi even received a visit from the discharge nurse. She gave us the impression we might be able to take Madi 'home' (to the apartment) from the hospital within a couple of weeks. She stopped by to drop off the information for us to review about what will be involved in caring for Madi once she is released.
Initially she will still be going to the outpatient clinic every day, but will eventually go to every other day, and then once a week. We will be drawing her blood ourselves and taking it in to the lab every day then, based on the results, taking her back to the clinic for medication or transfusions, etc. She will still be on an IV pump when we take her back to the apartment because she will be receiving the TPN (food in a bag) for quite some time. We will be giving her most of her medications orally, but there will still be lots of time spent at the clinic each week. They said it is not uncommon to spend 6 or 8 hours a day on the days she has to go in. We look forward to when that will only be once a week.
Yesterday, Madi's primary nurse, Lori, and I went to lunch and then had some fun getting a little pampering at the nail salon. (My fingers and toes are so beautiful.) And, it was SO relaxing...just what the doctor (okay, nurse) ordered! Then we went and had ice cream and really lived it up. I figured everyone should get one guilt-free day a year to pig out! Thank you Lori for helping me celebrate my birthday in style! Spending a few hours together gave us a chance to talk and I really enjoyed it. Lori said it wouldn't be out of the question for Madi to get to the once a week visits within just a couple of weeks.
When I got back from hanging out with Lori, I picked up Mikey and Linda and we went and did a little shopping. We ended up at Costco where we picked up a HUGE cake which we took to the hospital. Everybody sang and we pigged out some more and then left the rest of the cake for everyone else to pig out too. Since we got there at shift-change time, we're hoping most of it actually got eaten. When we got back to the apartment again, there were beautiful flowers waiting for me (thank you Rhonda) and lots of cards in the mail. Thank you to all of you who called and sent messages. It was a great day! Thank you Mike for getting up early and coming to the hospital to play with Madi so I could go out and play for the day.
I'll be heading back to the hospital here shortly to give Mike a chance to come play with Mikey. Can't wait till we can ALL be together here at the apartment.
Love you all and sure appreciate all you do for us!!
Marian
Tuesday, May 13, 2003 11:15 PM CDT Hi everybody!
Hope all of you Moms had a wonderful Mother's Day!! Madi gave me a great Mother's Day present...she started growing white blood cells!!! We are really excited! The doctors all believe she is engrafting and that would explain the low grade fevers and the skin rash she has all over her body.
My sister, Linda, brought our handsome little man, Mikey, back here to NC on Thursday, May 8th. It is so great to have him here with us!! Linda will be staying here with us for a month or so, and we are really enjoying having them at the apartment when we get there. Mikey has spent quite a bit of time in the swimming pool and absolutely loves it!!
Most of you know about Madi's Aunt Linda and the updates she has been sending out to our family and friends since Madi was diagnosed with ALL at 5 months old. She just completed update #62 and I've decided to copy and paste it to Madi's journal so those of you who are visiting this site who do not receive the updates directly will have an opportunity to enjoy Linda's notes. She is a wonderful writer and has been an unbelievable blessing to Mike and I, as well as to Madi and Mikey. I can't begin to tell you how much time she has saved us by doing these updates, saving us repeating the same information over and over again. She has unselfishly given of herself for over a year and a half, and now is going to continue putting her life on hold in order to help us out here in NC. She will most likely be the one doing the web site updates for us, at least while she's back here.
Below is Linda's "Madi Update #62".
We love you all and can't tell you enough how much we appreciate all of your love and support.
Sincerely,
Marian
Madison Renee Mitchem – Update #62 – Monday, May 12, 2003
Hello Madi Fans,
The Princess could use some cheers today. She’s had a couple of rough days and isn’t feeling her usual chipper self. The steroids have her little face a little puffy. The mucositis is causing her discomfort, particularly her little bottom and the pain medication is causing as much discomfort as her little red bottom.
Altogether, she’s not getting a lot of rest. Neither are her parents. Madi just likes to be held at the moment. The chiropractor will be very busy in a few days when this stage is over.
The doctors say the worst of the GI problems occur in the first 7-10 days. Naturally, Madison is doing things just a bit differently. Mike said the nurses have told him what some of the older kids have described as the feelings she’s probably having. It’s like having a sort of nausea from your mouth to your bottom and it hurts just to think about it. Madi has been getting Morphine to alleviate her pain, however it makes her itch. She almost rubbed her little nose off on Mike’s shirt until they started a drug called Narcan that reverses most of the side effects of the narcotic without losing the pain killer effect. Of course, that’s a very delicate balancing act. Unfortunately, it didn’t work.
When the Morphine started to give her a hard time a couple of days ago, they took her off of it and just gave her Tylenol for her fevers. Then, yesterday, they started the Morphine again and added Narcan. Then, because she just wasn’t getting any rest at all, they stopped everything again and called in the pain management specialists today to see what can be done to help Madi get some relief.
Apparently, Madi’s nerve endings are being over stimulated by one or more of her medications. The plan is to start a medication called Neurontin that she will take orally (via a syringe just like her Tylenol) three times a day. They’ll give the medication a couple of days to target her nerve endings and alleviate most of her discomfort. Mostly, it’ll help her hang in there until she starts to heal by herself. If the Neurontin doesn’t work, they’ll try something else.
They say the new stem cells go into the system and try to find out what they need to be. They end up in the skin and say, "Hey, this isn’t our skin." And, until they figure out that the skin isn’t a foreigner, it’s the skin that gets a lot of the initial transplant trauma. Skin and rapid growing cells like intestinal tract lining and hair follicles. The good news is that it means the new cells are doing just what they are supposed to do. And, Madi’s white blood cell count is up a tiny bit from nearly none to a few. Yeah!!
It was still great to see her yesterday. Mikey and I have had to wait a couple of days before we were allowed to visit because of our exposure to so many people on the planes. We got to go to Terry Clem’s church Saturday and then we went shopping for Marian’s Mother’s Day present. Mikey loves his new apartment, mostly because of the really lovely pool. He was in it twice today!
While Mikey was playing in the pool I asked him how he liked seeing his baby yesterday and he pretty much didn’t answer. He did say he was glad he got to sing to her and he will be gIad to see her tomorrow. He was ready to go back today and visit but there wasn’t time. I think he understands that Madi is the reason we’re here. He doesn’t miss a trick. Tonight I asked him where his toys were thinking he would go to the cupboard and get out his checkers for a quick game. Instead, he said, "They’re in storage."
This is all really happening and it is sort of difficult to get a grip on all the different things that are a part of every day. I’m used to earthquake land and yesterday we were in the line of a set of tornadoes. And they say this is hurricane alley. What next? Monsoon? None the less, Mikey got a little sun today and the next few days appear to be perfect. Also, does jet lag make you doofey? How long does it take to go away? Marian says she thinks they’re all still suffering from it…
Hope all the Mothers had a great day yesterday. Hope you are doing well out there. Love the responses on the web page. So do Mike and Marian and, according to email, so do many of you. So happy the folks at Duke turned us on to the ‘caring bridge’ website. Thanks to so many of you for sending cash to Mike and Marian and me, Linda Dealy. We’re getting more CD’s copied and more pictures of Madison (who is the album cover.)
Ok, now I’ve lost control of the font on this laptop. More new stuff to figure out. Perhaps this is a sign that I’m finished for tonight.
Once again, thank you for the many prayers. Love to you and yours. Hug each other.
Madi and Mikey’s Aunt Linda
Friday, May 9, 2003 11:26 PM CDT DAY NINE:
Hi Everybody! It's Auntie Linda and Mikey. We had an uneventful flight yesterday which is about the best thing one can say about flying these days. Mikey was a little tense when we took off from Ontario but by the second take-off, he was so excited he almost burst.
Mikey got to see both of his parents last night. Mike picked us up and when we first saw him at the baggage claim area, Mikey ran up and gave him the biggest hug -- my eyes leaked and so did about 10 strangers...then he drove us to the hospital and Mike went up to stay with Madi while Marian took us to the apartment. I leaked again.
After a tour of the city, Mikey got to swim in the pool today and loves his new apartment. We'll get to see Madison tomorrow or the next day. We're making sure neither of us was exposed to any germs that might hurt the Sugar Baby while in the air with all those people...
Madison is doing well. Every day is a little different but the bottom line is -- the Happy Little Toddler is still hanging in there.
More soon. Check the picture album FREQUENTLY, the three pictures will be changing often.
Friday, May 2, 2003 4:00 PM CDT DAY TWO:
Madi is doing unbelievably well!! She has been up dancing with the Wiggles and playing her guitar. She still isn't interested in eating, but since she's getting her "food in a bag", she should be just fine.
Mikey and Aunt Linda are flying here on May 8th. We can't wait to be together again. Today, Mikey is at Disneyland with Papa, Grandma Judi, Uncle Gary, Aunt Wendy, and Cousin Eric. Earlier this week, he went to Knott's Berry Farm with Papa and Grandma Judi. (I believe the term is "spoiled rotten".) Uncle Gary says that we may have to introduce ourselves to Mikey when we pick Linda and him up at the airport! We're just glad that he is having fun. It's comforting to know that he is being so well taken care of when we are so far away.
Today Madi had a visit from Katherine, the little girl who had her stem cell transplant here at Duke 3 years ago. It was through a friend that we met Katherine's family and learned about Duke's stem cell transplant program. It was great to finaly meet them in person, and the girls hit it off like old friends! They are here from Southern California for Katherine's annual check-up and for the Rainbow Of Heroes Walk tomorrow. Katherine brought Madi a cute little Rainbow Care Bear and a card with this poem...
"I asked the Lord to bless you as I prayed for you today.
To guide you and protect you as you go along your way.
His love is always with you, His promises are true,
and when we give our cares to Him, you know He'll see us through.
So when the road you're traveling on seems difficult at best,
just remember we're here praying, and God will do the rest."
Thank you all for the tremendous response to Madi's web page! The entries in the guest book continuously remind us of how many people are out there who are keeping us in their thoughts and prayers.
Hug each other for us!
Mike, Marian, and the Princess
Wednesday, April 30, 2003 2:33 PM CDT Wow! Madi's transplant is complete! And just as they told us to expect, it was very anti-climactic. She just sat there in Daddy's lap and watched the Wiggles while the new stem cells flowed into her little body, just like any other blood transfusion. They gave her another dose of Benadryl, so she's been sleeping most of the day. We are sure proud of how well she handled all of the chemotherapy and the ATG. She did throw-up a few times Sunday night and Monday night, and has kept us pretty busy changing lots of diapers, but overall the side-effects she has experienced have been fairly minor. As usual, everyone is pleasantly surprised to see how well she is handling everything.
Last night, her primary nurse, Lori, brought her some new pink sandles with sparklies all over them, and Madi just loves them and hasn't wanted to take them off...not even to sleep. Lori also gave her a bunch of new Barbie outfits, so Madi and Mommy spent over an hour last night dressing up all of Madi's Barbie's (5 so far.) She has the most fun putting the little shoes on Barbie's feet, and wants Mommy to take care of the rest of the clothes.
We are so thankful that our little Princess is doing so well and thank God every minute for the opportunity to be hear and for the new hope we have for Madi's future.
Thank you to all of you who have taken the time to sign Madi's guest book. We are really enjoying reading all of the messages.
Love you all!
Marian, Mike and The Princess
Friday, April 25, 2003 2:54 PM CDT Welcome to Princess Madi's new web page! Madi and her mommy and daddy arrived in North Carolina on Thursday, April 10th. Madi spent the first week here getting her pre-transplant work-up. On Monday, April 21st, she was admitted to the Pediatric Bone Marrow and Stem Cell Transplant Unit at Duke University Medical Center.
She is currently receiving the chemotherapy to prepare her for the transplant which is scheduled for Wednesday, April 30th.
Madi would like to thank all of you for visiting her site and for your continued prayers and support.
We love you!
Madi, Mike and Marian
Friday, April 25, 2003 2:02 PM CDT This page has just been created. Please check back for additional updates.
Click here to go back to the main page.
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