I was just reading The Gap for the hundredth time. It seems that just wen I feel like I have it all figured out, and life is finally feeling somewhat normal, life tends to remind me that I'm wrong.
I tend to wake up everyday and live life without really thinking about the finality of my loss. So I do really well on a day to day basis. I get up, take Ethan to school, try to find a job(not working), clean, pick up Ethan, help him do his homework, and make dinner. I basically live the "normal life" of a stay at home mom. Then I look over at the pictures hanging on the wall, or log onto my computer and see her face staring at me and I fall right back to where I started. I get the knot in my stomach and the pain in my heart, my throat starts to hurt as I try to hold back the tears, and I am reminded that I am still the mother who lost her daughter.
I don't know when or if this will ever end. I wonder if I will have those terrible days for the rest of my life, or if there will be a day where life will just fall into place and Maddy will only be a wonderful memory and not a painful past. I wonder if there will ever be a night where the last thing in my thoughts won't be her illness. If anything will replace the severe pain that visits me every now and then. I wonder if I will ever be that person I was before I watched Leukemia take my daughter from me. I guess I can just pray that the person I am is better because of the person she was.
So, with all that being said, we are hangin in. We try to live everyday as best as we can. We have our good days, and our bad ones too. The holidays seem to be the worst. Holiday cheer doesn't seem to really fill us anymore.....something is always missing. I hope and pray that this year brings us a little more holiday spirit.....and maybe some good surprises.
Happy Holidays to everyone who still checks on us now and then. Thank you for your prayers and support. I hope your holiday season is filled with many blessings!
In Christ, Richelle
Tuesday, July 1, 2008 11:06 AM CDT
The Gap
The gap between those who have lost children and those who have not is profoundly difficult to bridge. No one, whose children are well and intact can be expected to understand what parents who have lost children have absorbed and what they bear. Our children come to us through every blade of grass, every crack in the sidewalk, every bowl of breakfast cereal. We seek contact with their atoms, their hairbrush, their toothbrush, their clothing. We reach for what was integrally woven into the fabric of our lives, now torn and shredded. A black hole has been blown through our souls and, indeed, it often does not allow the light to escape. It is a difficult place. For us to enter there is to be cut deeply, and torn anew, each time we go there, by the jagged edges of our loss. Yet we return, again and again, for that is where our children now reside. This will be so for years to come and it will change us profoundly. At some point in the distant future, the edges of that hole will have tempered and softened but the empty space will remain - a life sentence. Our friends will change through this. There is no avoiding it. We grieve for our children, in part, through talking about them and our feelings for having lost them. Some go there with us, others cannot and through their denial and a further measure, however unwittingly, to an already heavy burden. Assuming that we may be feeling "better" six months later is simply "to not get it." The excruciating and isolating reality that bereaved parents feel is hermetically sealed from the nature of any other human experience. Thus it is a trap - those whose compassion and insight we most need are those for whom we abhor the experience that would allow them that sensitivity and capacity. And yet, somehow there are those, each in their own fashion, who have found a way to reach us and stay, to our comfort. They have understood, again each in their own way, that our children remain our children through our memory of them. Their memory is sustained through speaking about them and our feelings about their death. Deny this and you deny their life. Deny their life and you no longer have a place in ours. We recognize that we have moved to an emotional place where it is often very difficult to reach us. Our attempts to be normal are painful and the day to day carries a silent, screaming anguish that accompanies us, sometimes from moment to moment. Were we to give it its own voice we fear we would become truly unreachable, and so we remain "strong" for a host of reasons even as the strength saps our energy and drains our will. Were we to act out our true feelings we would be impossible to be with. We resent having to act normal, yet we dare not do otherwise. People who understand this dynamic are our gold standard. Working our way through this over the years will change us as does every experience - and extreme experience changes one extremely. We know we will have recovered when, as we have read, it is no longer so painful to be normal. We do not know who we will be at that point or who will still be with us. We have read that the gap is so difficult that, often, bereaved parents must attempt to reach out to friends and relatives or risk losing them. This is our attempt. For those untarnished by such events, who wish to know in some way what they, thankfully, do not know, read this. It may provide a window that is helpful for both sides of the gap.
By Michael Crenlinsten
Still missing her every moment! Thank you for your continued prayers ans support. We are doing well. I will do a full update soon. I promise!
Blessings, Richelle
Wednesday, March 19, 2008 8:06 PM CDT
Wednesday, April 30,2008
Boy today seems to be beating me up. I just can't get Maddy and ALL of the little ones we love out of my head. My thoughts are filled with memories of all the little things that make me smile, cry, and miss them terribly. It's seems as though I always have at least one day that's filled with tears before we go to NC for the walk every year. I just can't help but have all the families who have lost children on my heart.
The Joiners, the Trimpers, the Mitchems, Viesta, the Naylors, the Kirks, Angela (please call me if you see this), The Johnsons, The Brashears, The lee's, Diane Hancock, Leslie, Diane (Brandon's mommy), Amy and Nina, Angie, the Ayles, the Coffmans, and many many more! We love you all! You have made a permanent imprint on our lives! When they release the balloons this Saturday we will be thinking of your children, and saying a prayer for you.
May god's peace fill your hearts, Richelle, Joe and Ethan
Hello everyone,
Once again our family is returning to North Carolina to participate in the Rainbow of Hero's Walk in honor of our little queen. We will be on an airplane on April 29th. I'm so excited!!!
We had a great trip last year. We raised over 1,000 dollars with the help of all of our faithful supporters. It has been two and a half years now since we lost our Moo to the monster we call cancer. We continue to struggle all the time with our grief, but we take joy in helping others get through the hardship a Bone marrow Transplant brings. So, again we will be walking to honor our little girl and the others who have struggled through these horrible childhood diseases.
This year we will walk on May 3, 2008, as Queen Maddy's Court, just as we did last year. All of the funds that are raised will go to the PBMT family support program. The program provides various resources needed to get through transplant (i.e., phone cards, parking passes, money for food and transportation). Many families arrive at Duke with no money, no place to stay, and no resources to help them receive these things.
As I reflect on how many families we met that were affected by terminal illness I feel compelled to urge you to donate. This is their last hope. They have no where else to go, no other options. This is the last chance they have to save their child (some have multiple children with the same illness). All of the children who are treated at Duke have been through many treatments that have failed. Many of the families who arrive at Duke left everything and everyone they know behind to give their child a chance. Some have to leave other children with family in order to save their sick child.
If you would like to support our team in raising funds for the PBMT Family Support Program, log on to http://www.cancer.duke.edu/pbmt/rainbows/#donate. Go to Click Here to Make a Donation, fill out all of your information (PLEASE DON'T FORGET TO CLICK ON THE DROP DOWN BOX AND CHOOSE QUEEN MADDY'S COURT), then click on continue to payment. If you would like to donate by mail please click on the link at the top of the donation page that says donating by mail. Don't forget to add your name to the check or on line donation so we can thank you.
Thank you so much for your continued prayers and support! Maddy is done fighting Cancer in a tattered body. She has won this earthly battle and is living with the Lord. She is beautiful and free. Though we are left behind, we know she has left an imprint on so many lives. She will be missed until the day we are reunited with her. Until then we will continue to support the Duke Pediatric Stem Cell Program and all that Dr. Kurtzberg is doing to help children who suffer.
I want to say an extra thank you to those who donated last year(I only know who you are if you left your name). Rick and Rhonda Guard, not only for your gift but for the many prayers you've said.....and still say on our behalf. Matt and Kara Maher, you have been amazing prayer warriors as well. Grandma June, thank you for your prayers and support. Sasha, you have given so much since the moment you found out Maddy was sick. You're amazing! Mike and Marian, thank you for being such good friends. No one knows our pain like you do. We miss your Madi terribly! Becky Gonzales, you're love, support, and the little things you do to show you remember our little girl has touched our hearts. Christina and Greg, thank you for the support you show even though you have never even met Maddy. Julie Bihn, Stephanie Randolpf, Maggie Grice, Jessica Miller, SBCSS employees, Crown and FAA employees, and Oasis Tanning customers, thank you so very much for all the support you've given through out our journey with Maddy. You have all been such a blessing. We love you!
I want to say a special thank you to our family. Carol and Greg, you have taken every step with us. I don't know what we would have done without you. Rachel and Mike, thank you for the love and support you continue to give so freely. Nana and Papa Giddens, for your giving hearts. Uncle Rick and Aunt Terri, you are nothing short of amazing. Thank you for all you've done for us since Maddy was diagnosed. You have given way more than you should! Jen, thank you for rushing over every time I call you in tears and putting up signs for the walk at your salon. Shan, Mom, Linda, Keith, and everyone else, thank you for for all you do.
I'm sorry if I've forgotten anyone. Please know we truly are blessed to have so many people supporting us.
Many Blessings, Queen Maddy's family
Here are some facts about The Pediatric Stem Cell Program.
Since its creation in 1990, the Duke Pediatric Blood and Marrow Transplant (BMT) Program has transplanted over 1200 children suffering from cancer, genetic defects or blood disorders. Today, over half of these children are surviving long-term, cured of their underlying disease by their transplant. With a current waiting list of 30-40 children, and a referral base that is world-wide, the Duke Pediatric BMT Program is the largest children’s transplant program in the world, now transplanting some 100 children annually. It is a program of last resort: These children have a life expectancy of less than one year without a transplant.
Wednesday, March 12, 2008 5:19 PM CDT
Hello again,
I've been thinking about writing an update for a while now, but every time I start to write I draw a blank. Sometimes all I can do is cry when I think of Maddy. How do I write that on paper?
Tomorrow is Maddy's 6th birthday. We will go to our favorite California beach to remember her. We used to take she and Ethan to this beach to find sand dollars and run around like wild animals. That's the only place she could fall and it was soft enough to not make her bleed. Everything in our lives revolved around weather or not it was safe for Maddy. That's probably why she loved the beach so much. It was the only place she felt a sense of freedom. I hope tomorrow brings us good memories of the time we spent with her there.
Maddy,
I miss you so much. Not a day passes when you don't consume my thoughts. I can't go anywhere or do anything without remembering something about you. Most of the time it makes me smile, but sometimes I can't help but be filled with grief. I wonder what your favorite color would be now, if you'd still like princesses, or if you'd be begging me to get those Hannah Montana tickets that all the parents are fighting over...and I would fight for them! I can only imagine who you'd be today. I know you'd still be our beautiful little girl with a sweet disposition and a spunky attitude. I guess that's what grieves me the most. Mommy, Daddy and Brother miss you and love you so much baby girl. We're gonna miss you even more tomorrow.
Moochies and squeezers!!!
Thank you all for keeping up with us. I have plenty of stuff to share with you but I'll save it for the next update. Please continue to keep us in your prayers.
Blessings, Richelle
Thursday, December 27, 2007 10:03 PM CST
I guess we made it through the holidays. Not without tears....but we made it. We continue to call on the Lord for comfort. Some days are better than others. I hope the New Year brings us a little more peace.
Thank you for all of your prayers,
Richelle, Maddy's mommy forever
p.s. please stop by Ethan's site and wish him a happy birthday. www.caringbridge.org/ca/superethan
Thursday, December 27, 2007 10:03 PM CST
Wow, I can't believe Ethan is nine! Nine years ago, we were blessed with a sweet baby boy.....and every year we become more blessed as he becomes such a wonderful little man.
When I look back I can't believe what we've all been through over the past nine years. We had Ethan, bought our first home, had a precious little girl, sold our house, lost our little girl. It seems like we are always looking back these days. We miss what we had. We worked so hard to get as far as we did.....cancer changed it all. I hate cancer!
I often wonder who we'd all be if we had never gone through the pain we have. Who would Ethan be if he had his sister as a companion? They were best friends. My heart breaks for his loss, but I'm so proud of how he deals with it. I'm so happy he know he will see her again because of what our Savior did for us. His faith is amazing.
Ethan has been a saving grace for us. He is what makes us get out of bed every day. He is the reason we move on. I thank God for him.....and I'm so proud of him.
Thank you for keeping up with our little man. We are so happy to have him as a son.....and we look forward to seeing who he becomes. Happy Birthday Ethan!
God Bless, Richelle
Wednesday, December 26, 2007 10:26 AM CST
I guess we made it through the holidays. Not without tears....but we made it. We continue to call on the Lord for comfort. Some days are better than others. I hope the New Year brings us a little more peace.
Thank you for all of your prayers,
Richelle, Maddy's mommy forever
Thursday, November 8, 2007 1:44 PM CST
The holidays are creeping up again. I seem to be feeling a little better about them this year. The past two years have been so hard on me. I didn't feel like celebrating without Maddy here. Of course I have to put a smile on my face and go about it for Ethan, but inside I was torn. It's amazing how we(parents who have lost a child)can be dying inside but look so put together on the outside. Sometimes I wonder if that's a good thing or a bad thing. I wonder if, because of my happy face people forget that my heart is broken.
The other day a women told me that she didn't understand how I hold it together on a daily basis. You know, I can't truly answer that. I know that God keeps me going, but I can't tell you that I feel his presence all the time. There are some days that I wonder if he's ever by my side....and yet I still get out of bed with a smile on my face.
For the most part I am happy. I feel blessed and know God has given me so much. I also feel so empty. How can a person feel so blessed and so empty all at once? That must be God! I think I'm starting to realize that God pulls us through this tragedy if we feel his presence or not. So Missy, here's my answer. God. God is what holds me together on a daily basis. Weather I feel him or not. He wakes me up, puts a smile on my face, and pulls me out of bed. I am blessed to have a God who loves me. And because of that, I will see my little girl again. So bring on the holidays! I will rejoice because of the blessings God has given me. And I will grieve Maddy's loss because I know God will pick me up, put a smile on my face, and pull me through.
I want to wish all of you happy holidays. I want to especially wish those who have lost their children a blessed holiday. I will be holding you in prayer, as I know how difficult it is to put a smile on your face when you want so badly for your child to be here.
Maddy, Sweet, sweet girl. Mommy misses you with every inch of her heart and soul. The days will be bitter sweet till I hold you again. I love you punkin!
Peace and Blessings, Richelle, The Queen's Mommy
P.S. Thank you Rachel for the entry you posted. I don't know why but it touched me. I too want the Lord to hurry. "I can't wait", doesn't even begin to express how badly I want to see her. Love you!
Monday, September 10, 2007 2:07 PM CDT
September is Childhood Cancer awareness month. Please watch the video.
Cancer doesn't only change your life....I takes your life.
Please help these children. At the end of the video there is a web address. Please visit it and do what you can to help. We know first hand what it's like to watch a child suffer through cancer. Unfortunately we lost our little Queen (www.miracleformaddy.com). Others won't have to if we can get the funding for more research.
Thanks friends, Richelle, the Queen's mommy
Friday, August 31, 2007 9:24 AM CDT
Two years.......
I can't even believe it's been that long since I last held My Maddy Moo. Some days it feels like it was just yesterday that she left us. Most days I miss her so bad my heart aches.....I mean, it literally aches! Most days God comforts me though. He reminds me that there will be a sweet day when he will reunite my baby and I. I long for that day.....but until then the poem below rings true for me everyday.
Thank you all for your love and support over the years. It's means so much knowing that others loved her too.
Maddy Moo, I carry your heart with me baby girl. From the moment you left my arms , till the day you return to them. I love you!
I carry your heart with me
I carry your heart with me(I carry it in my heart)I am never without it(anywhere I go you go, my dear; and whatever is done by only me is your doing,my darling) I fear no fate(for you are my fate, my sweet)I want no world(for beautiful you are my world, my true) and it's you are whatever a moon has always meant and whatever a sun will always sing is you
here is the deepest secret nobody knows (here is the root of the root and the bud of the bud and the sky of the sky of a tree called life; which grows higher than the soul can hope or mind can hide) and this is the wonder that's keeping the stars apart
I carry your heart(I carry it in my heart)
ee cummings
Celebrating Maddy in California, Mommy, Daddy, and Brudder
Tuesday, August 7, 2007 5:52 PM CDT
I just read some devastating news on Noelle Naylor's caringbridge site. Little Noelle has just relapsed after her 2nd transplant. We met her family during Maddy's second transplant. She relapsed not long after Maddy passed and had her second transplant when we were back for the Rainbow of hero's walk. Please keep the Naylor family in your prayers. They will need all the support they can get. Noelle's website is http://www.caringbridge.org/wi/noelle.
This news comes during the hardest part of the year for our family. August 31st marks 2 years since Moo went home to Jesus. Please keep us in your prayers as well.
Heart broken in California, Richelle
p.s. This doesn't happen often, but there have been some "not so nice" comments left on caringbridge sites in the past. If you have nothing nice to say to the Naylor's, please don't even visit their page. They have enough to deal with right now.
Thursday, July 24, 2007 7:59 PM CDT
Joe and I will be married for 9 years tomorrow. Over half of our marriage has been spent fighting cancer and mourning the loss of a child. I want to let everyone who reads this know that God can create a strong marriage....if you let him. Despite everything, Joe and I truly love and support each other through thick and thin. Thank you Lord for blessing me with a wonderful husband and a strong marriage!
Thursday, July 19, 2007 1:53 AM CDT
I know, it's been a while since I've updated. To tell you the truth, I wonder if anyone even stops by here anymore. I know many people loved...and still love Maddy...and our family, but life goes on and people move on. I have tried to write many times in the past couple of month's, but for some reason I just couldn't find the words. I've been struggling with that lately. I've been struggling with a lot of things lately.
Since it's been a while I have a few things to tell you. The Rainbow Walk went really well. Actually, it was rained out...but it made a lot of money, and that's what counts. We didn't have a chance to spend time with all the people we really wanted to see but we did get to at least say hello. We saw people we hadn't seen in years...it was so nice. They were our family while we were going through the hardest time of our lives and we continue to miss them every day.
Ethan is going to be 9 this year. Can you believe it!? He is starting a new school as a 2nd grader and we are all very excited, and a little nervous for him. He has definitely always been our shy child. He has become a lot more independent though. I can't tell you how proud we are of what a wonderful young man he's becoming. Children are so resilient. I wonder all the time how they do it.
Joe is still working for the same company. It's not his favorite place to be, but it's a job. To tell you the truth, I don't think he'll be happy anywhere until we are back where we belong in North Carolina. He does what he has to do for his family and waits patiently for the right time for our move. Some days he has to bring me back down to earth as I am freaking out and begging him to just forget every plan we have and pick up and go. I don't think living in our car would be a good idea though. And as much as our friends love us, I don't believe they want us knocking at their door with all our stuff in tow.
As for me, I am hanging in. Joe and I are still trying for another addition to our family. We know it's all in God's time. So, we wait patiently for our little surprise to come along. I am not working at this time so I've had the whole summer to spend with Ethan. Swimming in the pool and going to see the latest Disney movies has been our daily routine. I'm not looking forward to the day he goes back to school.
So that's it. No great news, nothing exciting to report. We continue to miss Maddy with every fiber of our souls. She will forever be apart of our family. Every day we wish she would have never left....or wish that she could return. The only thing that keeps us going is God's promise. We will be with her again.
Thank you for all your prayers and support. Please continue to lift us up in prayer as we still struggle with her loss. I don't think that will ever go away.
Still missing Maddy here in California, Richelle
Tuesday, April 10, 2007 11:00 AM CDT
Hello Friends,
It's that time again!! As you all know, our family goes back to North Carolina every year to participate in the Rainbow of Hero's Walk in honor of our little queen.
Last year was a really hard year as the loss of our little Maddy was still so fresh. We continue to struggle all the time with our grief, but we take joy in helping others get through the hardship a Bone marrow Transplant brings. So, again we will be walking to honor our little girl and the others who have struggled through these horrible childhood diseases.
This year we will walk on May 5, 2007, as Queen Maddy's Court, just as we did last year. All of the funds that are raised will go to the PBMT family support program. The program provides various resources needed to get through transplant (i.e., phone cards, parking passes, money for food and transportation). Many families arrive at Duke with no money, no place to stay, and no resources to help them receive these things.
Please take a moment to think about the families in this situation. This is their last hope. They have no where else to go, no other options. This is the last chance they have to save their child (some have multiple children with the same illness). All of the children who are treated at Duke have been through many treatments that have failed. Many of the families who arrive at Duke left everything and everyone they know behind to give their child a chance.
If you would like to support our team in raising funds for the PBMT Family Support Program, log on to http://www.cancer.duke.edu/pbmt/rainbows/#donate. Go to Click Here to Make a Donation, fill out all of your information (PLEASE DON'T FORGET TO CLICK ON THE DROP DOWN BOX AND CHOOSE QUEEN MADDY'S COURT), then click on continue to payment.
Thank you so much for your continued prayers ans support! Maddy is done fighting the battle. She has won and is living with the Lord. Though we are left behind, we know she has left an imprint on so many lives. She will be missed until the day we are reunited with her. Until then we will continue to support the Duke Pediatric Stem Cell Program and all that Dr. Kurtzberg is doing to help children who suffer.
Many Blessings, Queen Maddy's family
Here are some facts about The Pediatric Stem Cell Program.
Since its creation in 1990, the Duke Pediatric Blood and Marrow Transplant (BMT) Program has transplanted over 1200 children suffering from cancer, genetic defects or blood disorders. Today, over half of these children are surviving long-term, cured of their underlying disease by their transplant. With a current waiting list of 30-40 children, and a referral base that is world-wide, the Duke Pediatric BMT Program is the largest children’s transplant program in the world, now transplanting some 100 children annually. It is a program of last resort: These children have a life expectancy of less than one year without a transplant.
p.s. Greg's results came back. He has no cancer!!! Praise the Lord!!!! Thank you for all of your prayers.
Saturday, March 24, 2007 8:25 PM CDT
Greg's surgery went well. The doctor said that everything looks really good!!! Praise God!!! We won't get the final results until his next appointment in two weeks, but all in all it looks good.
He was released from the hospital today with strict instructions on what to eat and how much activity he's allowed to have(none!). He gets vegetable broth and water until Tuesday at which point he will only get soft food. He seems to be in good spirits and is happy that it's over so he can get back to living.
Thank you so much for keeping him in your prayers!!! God willing, everything will turn out well and he will be healthy and happy for at least, another 30 years...if not more!
I will update with the final results as soon as we get them.
Many Blessings, Richelle
Friday, March 23, 2007 2:32 PM CDT
Joe's dad is having Surgery today. He is having part of his small intestine, large intestine and his appendix removed. Please pray everything goes well during the surgery, and for the results of the biopsy to be something treatable.
Thank you for your continued support and prayers. We really couldn't ask for more.
God Bless! Richelle
Moo,
Keep an eye on Papa today! Make sure his angel is doing it's job!!! We lub you and miss you little girl!!!
Tuesday, March 13, 2007 11:36 AM CDT
She is five today. I told her when she was healthy that I was going to throw her a princess tea party when she turned five. I wish I would have given her the princess tea party when she was three. I wish I could have done a lot of things with my precious girl.
Today we are going to the beach (Moo's favorite place). We are going to spend the day soaking her memories up! I can't tell you how much we miss her. I'm trying not to cry and run all of the pretty pink makeup I am wearing in her honor. I'm sure tears will fall today but they will tears filled with hope as we know we will celebrate another birthday with our sweet girl someday.
Maddy, we love you soooooo much!!!! We miss you and can't wait to see you again.
Happy birthday to you Happy birthday to you Happy birthday dear Moooooooo Happy birthday to you!
We love you!!!!!
Mommy, Daddy, and Brudder
Wednesday, February 14, 2007 9:55 PM CST
Maddy,
I miss you most on days like these sweet heart. You were the definition of a Valentine!!! You were such a lover; so sweet and so loved!!! I can't even begin to express how much I miss you. Sometimes it's unbearable!!!! I long for you!!! I pray for the Lord to come sooner than later; with you by his side waving at me with that perfect smile you have. Oh how I long for that.
Happy Valentines Day my sweet girl!!! Mommy loves you so much!!!
Till we meet again, Mommy
Tuesday, January 30, 2007 3:52 PM CST
Greg is feeling better. He was in the hospital for two days and had an exploritory surgery done to see what is causing all his discomfort and weight loss. The preliminary finding is Chrone's. The doctors said that they would get back to him in a couple days after they get the results from all of the biopsy's they took. Hopefully we can get all of this under control and get him back on his feet.
Thank you for all of your prayers; for Greg, for Maddy, for us. Thank you for being so faithful!
Maddy,
Thanks for looking after Papa. I want you to know that I love you and Miss you terribly....but I carry you with me everyday!
I carry your heart with me
I carry your heart with me(I carry it in my heart)I am never without it(anywhere I go you go,my dear; and whatever is done by only me is your doing,my darling) I fear no fate(for you are my fate,my sweet)I want no world(for beautiful you are my world,my true) and it's you are whatever a moon has always meant and whatever a sun will always sing is you
here is the deepest secret nobody knows (here is the root of the root and the bud of the bud and the sky of the sky of a tree called life;which grows higher than the soul can hope or mind can hide) and this is the wonder that's keeping the stars apart
I carry your heart(I carry it in my heart)
ee cummings
I love you my sweet little girl!!!
Mommy
Saturday, January 27, 2007 10:27 PM CST
Hello everyone,
I just wanted to leave a quick note asking everyone to keep my father inlaw in there prayers. He has been pretty sick for 3 weeks now. He went for some tests and was put in the hospital for more tests. He's feeling terrible and doesn't want to be there. Please pray that whatever they find is something that is easily treated.
Joe, Ethan and I are hanging in. We have our good days and our bad days. We miss Maddy every second but we have some wonderful memories of her that keep us going. We look forward to the day we can hold her again.
Thank you all for your support! We really appriciate the kind words you leave in the guestbook. I know I don't write that much anymore, but we do read the guestbook everyday. Thank you for your continued support. It means so much to us!!!
I'll update you on Greg as soon as we find out what's going on.
Praying, praying, praying here in California, Maddy's Mommy
Thursday, December 28, 2006 1:49 PM CST
IT HURTS TODAY!!!!!!
Thursday, December 7, 2006 9:56 PM CST
I really need to hold Maddy tonight! I know I can't so I'm settling for video's. She was so wonderful, kind, fiesty, funny, smart and beautiful! The video's made me smile and broke my heart at the same time. I wish she was here. I wish I could hold her, kiss her, and lub her! I dust miss hers! Please continue praying for us. The holiday's just make it worse.
Moo,
Mommy, Daddy and Ethan miss you just as much today as we did the first day you left us. The pain hasn't gone away; infact sometimes it's much worse. Time doesn't heal pain! We will miss you until we hold you again! We will ache for you until the moment we are reunited! We love you sweet baby! Have a wonderful Christmas in Jesus' presence. I wish we were all there with you. We will be-in time. Until we meet......
Father,
Come quickly......and please help us keep going until you do.
In His name, Richelle
Tuesday, November 28, 2006 4:18 PM CST
Well the holidays are here and it to tell you the truth it sucks! We try to go about our days like life is normal; but behind the smiles that we have to show we are grieving. I still haven't been shopping for fear that the only things I'll see is what I want to get for Moo. So I am being a procrastinator this year.
December 4th marks Maddy’s second relapse. Christmas will never be the same. I can’t believe it’s been two years. I can’t believe this is our second Christmas without our baby girl. I miss her….that will never change!
We still have no baby news. This has been very difficult for us. We have never struggled with having children. It took us one try to conceive Maddy! At this point all I can do is trust that the Lord has a perfect plan involving a perfect child for our family.
I hope all of our family, friends and Maddy’s faithful followers have a wonderful Christmas. I hope and pray that Christ will be at the center of your celebration. After all; He is the one that makes Christmas possible. Praise God!!!
Go hug your kids….and thank God for them!!!!!!
Blessings to you all! The Bates family
Sunday, October 15, 2006 4:11 PM CDT
The Gap
The gap between those who have lost children and those who have not is profoundly difficult to bridge. No one, whose children are well and intact can be expected to understand what parents who have lost children have absorbed and what they bear. Our children come to us through every blade of grass, every crack in the sidewalk, every bowl of breakfast cereal. We seek contact with their atoms, their hairbrush, their toothbrush, their clothing. We reach for what was integrally woven into the fabric of our lives, now torn and shredded. A black hole has been blown through our souls and, indeed, it often does not allow the light to escape. It is a difficult place. For us to enter there is to be cut deeply, and torn anew, each time we go there, by the jagged edges of our loss. Yet we return, again and again, for that is where our children now reside. This will be so for years to come and it will change us profoundly. At some point in the distant future, the edges of that hole will have tempered and softened but the empty space will remain - a life sentence. Our friends will change through this. There is no avoiding it. We grieve for our children, in part, through talking about them and our feelings for having lost them. Some go there with us, others cannot and through their denial and a further measure, however unwittingly, to an already heavy burden. Assuming that we may be feeling "better" six months later is simply "to not get it." The excruciating and isolating reality that bereaved parents feel is hermetically sealed from the nature of any other human experience. Thus it is a trap - those whose compassion and insight we most need are those for whom we abhor the experience that would allow them that sensitivity and capacity. And yet, somehow there are those, each in their own fashion, who have found a way to reach us and stay, to our comfort. They have understood, again each in their own way, that our children remain our children through our memory of them. Their memory is sustained through speaking about them and our feelings about their death. Deny this and you deny their life. Deny their life and you no longer have a place in ours. We recognize that we have moved to an emotional place where it is often very difficult to reach us. Our attempts to be normal are painful and the day to day carries a silent, screaming anguish that accompanies us, sometimes from moment to moment. Were we to give it its own voice we fear we would become truly unreachable, and so we remain "strong" for a host of reasons even as the strength saps our energy and drains our will. Were we to act out our true feelings we would be impossible to be with. We resent having to act normal, yet we dare not do otherwise. People who understand this dynamic are our gold standard. Working our way through this over the years will change us as does every experience - and extreme experience changes one extremely. We know we will have recovered when, as we have read, it is no longer so painful to be normal. We do not know who we will be at that point or who will still be with us. We have read that the gap is so difficult that, often, bereaved parents must attempt to reach out to friends and relatives or risk losing them. This is our attempt. For those untarnished by such events, who wish to know in some way what they, thankfully, do not know, read this. It may provide a window that is helpful for both sides of the gap.
By Michael Crenlinsten
Thursday, October 5, 2006 10:24 PM CDT
10-6-06 Update on Noelle: The good news didn't last very long. Another little soldier will be fighting a second battle. Darn it! Lord Please be with Noelle and her family. Give them peace and hold them tight.
Please keep Noelle and her family in your prayers. www.caringbridge.org/wi/noelle
We continue to miss our little girl. We miss everything about her, but we will always carry her in our hearts.
I carry your heart with me
I carry your heart with me(I carry it in my heart)I am never without it(anywhere I go you go,my dear; and whatever is done by only me is your doing,my darling) I fear no fate(for you are my fate,my sweet)I want no world(for beautiful you are my world,my true) and it's you are whatever a moon has always meant and whatever a sun will always sing is you
here is the deepest secret nobody knows (here is the root of the root and the bud of the bud and the sky of the sky of a tree called life;which grows higher than the soul can hope or mind can hide) and this is the wonder that's keeping the stars apart
I carry your heart(I carry it in my heart)
ee cummings
We love you sweet Maddy! We will carry your heart in ours until we meet again. Sending MOOchies your way!
Mommy, Daddy, and Brudder
Wednesday, October 4, 2006 11:54 AM CDT
Please pray for Noelle. They found Blasts in her blood. She was transplanted for AML during Maddy's second transplant. Why these precious babies!?! Her site is www.caringbridge.org/wi/noelle.
I'll have an update soon.
Blessings, Richelle
Wednesday, August 30, 2006 6:31 PM CDT
Well I guess we can't avoid it. Unfortunitely, tomorrow is coming wether we like it or not. Every day brings us closer to the day our little Queeny left our arms to be with Lord. August 31st has been the saddest and the happiest day of our lives. We we're seperated from Maddy, but now she is in the presence of the Almighty!
I don't think I have to tell you how heart breaking this is....how much we miss her...how much this hurts! Every day is another day without our Moo, and every day we are reminded that Heaven is where we long to be. I believe we've long for home all our live's without even realizing it....there is always that empty spot you just can't seem to fill. Now we know what's missing, and we yearn for it! We long to see our Lord, and be reunited with our baby.
Maddy has taught us A LOT of things. The most important thing she taught us was the love, power, and mercy of our Father. How amazing!!!!! I can't wait til I am in His presence! Maddy will be saying, "See, He knew what he was doing!".
Tomorrow our family will be celebrating Maddy's life at the beach(her favorite place to be). We will be releasing balloons and blowing out a single candle for her first year in heaven. We will rememeber the little girl who showed us who Christ really is! We will remember how blessed we were because of her. Our live's will be forever changed beacuse of her!
Thank you for your support over the last 3 years...especially this past year. Your love, prayer's, and encouraging words mean so much to us!!!! Thank you, thank you, thank you!!!!!!!
To my sweet baby girl, Mommy, Daddy, Brudder, Nana, Papa, Kikky, Uncle Mike, Caden, Weagin, Shanny, and many, many more miss you so much! We think about you every day! Remembering you makes us smile, laugh, and cry. You will be our little Queenie forever. We will always love you. We will always long for you....until the day we hold you again. Lubs and Moochies from us to you, sweet Moo!
Missing her here in California, Richelle, Joe, Ethan, and family
Monday, August 28, 2006 7:01 PM CDT
The song I dedicated to my Maddy is in the guestbook. Stop in and listen. It's in Brenda's entry....just push play.
We're hanging in. We're just trying to get past this week. Only God can give us peace right now.
Thank you for checking in on us....And praying for us! Please stop by Ethan's site (the link is below). I did an update.
Missing Moo here in California! Richelle, Joe, and Ethan(Brudder)
Tuesday, August 8, 2006 12:21 AM CDT
This is for you Maddy. Mommy misses you so much! Whenever I hear this song it takes me back to you. I love you!
Fix You When you try your best but you don't succeed When you get what you want but not what you need When you feel so tired but you can't sleep Stuck in reverse.
And the tears come streaming down your face When you lose something you can't replace When you love someone but it goes to waste Could it be worse?
Lights will guide you home And ignite your bones And I will try to fix you
And high up above or down below When you're too in love to let it go But if you never try you'll never know Just what you're worth
Lights will guide you home And ignite your bones And I will try to fix you
Tears stream, down on your face When you lose something you cannot replace Tears stream down your face And I..
Tears stream, down on your face I promise you I will learn from my mistakes Tears stream down your face And I..
Lights will guide you home And ignite your bones And I will try to fix you.
I wish I could have fixed you baby!
Tuesday, August 1, 2006 12:04 AM CDT
As Carolyn would say, "Another soldier down". We lost another sweet girl this morning. Her story reminded me so much of Maddy's. Please keep this family in your prayers as they begin their life without Skyler. Please drop by her site to tell them your praying for them. www.caringbridge.org/visit/skylerjones.
Yesterday marked 11 months since Maddy went home. In some ways it feels like an eternity, but mostly it feels like we just said goodbye. We miss Maddy so much. There isn't a day that passes when we don't talk about her and remember her as a family. I love keeping her memory alive, but at times it makes the grief worse.
One year is coming up on us really fast! Please pray for us as August 31st aproaches. The pain still feels raw at times. Please continue to pray for the peace only God can give.
Still no baby news. I will definitely keep ya'll posted!
Still grieving, but trusting here in California, Richelle, Joe, and Ethan
Monday, July 10, 2006 1:48 PM CDT
Sunday, July 23, 2006 Another sweet princess lost her battle yesterday. Her family fought so hard! They just wanted to see there little princess run and play...and enjoy a long life. Tears flow for her family.
Praise God for Princess Tiahna's total healing. Praise God that Tiahna doesn't have to deal with the yuckies anymore. Pray for God to comfort those who were left behind.
If you would like to visit her site, it is www.carinbridge.org/visit/tiahnahoff. Thank you for your continued prayers for us and for others.
Blessings, Richelle
Hello,
I know its been a while. I just haven't been able to bring myself to write.
Saturday marked the first day Maddy went to PICU. I can't even begin to tell you how hard it was for us to see her go through all she did. In fact, that's the thing that still hurts me the most. It seems that lately my pain comes from the memories of the pain that Moo went through. I still wonder why she had to hurt so much! I miss her more than anything!!!
The next couple of months will be hard. I know that everyday will bring a new memory of what we went through with Maddy. There's no way we can ever erase those horrible memories. I pray that instead of dwelling on those memories I can replace them with memories of Moo when she was vibrant and beautiful! Boy do I miss her!
The work on the apartment continues. Joe and Greg are working hard and I'm busy making sure it all looks good...LOL! We still have a couple of weeks to go before its finished. We are living with Carol and Greg for now and that's going well. God has blessed us with them. Thanks Carol and Greg for doing so much for us! We love you!
We are still trying for another Bates baby. I pray that the Lord will bless us with good news very, very soon! Its seems as though there is something in the water cuz there are alot of prego's around me. Maybe Joe and I need to start drinking some of that water! :)
I know the Lord has plans for our family, and I know they are great. I am curious as to what they are, and anxious to get on with it all. Thank you all for your continued love and support! Your prayers are always needed and truly appriciated!
Please pray for Brenda's(Ethan's tutor from NC) husband Guy. Today he will have a rod removed from his leg due to infection. Please remember to keep all those who are fighting childhood diseases in your prayers. Our journey with cancer is over but for many it has just begun...and the journey is long.
Love, Richelle
Moo,
Mommy misses you every waking moment! Sometimes I can't even breath. I am so happy that you are healed, but I long for your moochies and lubs! I wait for the day when we are reunited. Oh how sweet that will be! I love you Miss Moo!
Moochies, Mommy
Tuesday, June 20, 2006 5:42 PM CDT
Hello,
Sorry I have kept you waiting. First I want to start off by saying that Zoe went home to Jesus on June 9th. Please keep her family in your prayers as they will be dealing with a loss that is almost unbearable at times. Her web address is www.caringbridge.org/visit/zoebachman
Joe's test results came back and everything is going well. We aren't quite to the point where we can start trying for another Bates baby, but WE ARE CLOSE!! Pleas pray that the next test shows that we can move forward.
All is well here on the West Coast. The weather is HOT and the smog is horrible some days, but life is ok. We'll hopefully be moving into our new home in a few weeks. We're excited to see where God puts us this time next year!
Please continue to keep us in your prayers. Although everyday brings us a little more healing, we still greive for our little Queen. We miss her terribly!
Blessings, Richelle
Monday, June 5, 2006 9:33 PM CDT
Hello Friends,
Just thought I would tell all that we're doing ok. At the end of this month we will be moving out of our apartment and into the studio apartment over Carol and Greg's garage. It will be tight for a while(500 square feet to be exact!), but this is what we have to do to get where we want to be. I pray that this move will get us closer to North Carolina....oh I pray!
No baby news yet. Joe will have a test this Friday to see if we can start trying. Pray, pray, pray! I really have baby fever. I can't wait to have a little one again!
I have a new prayer request for ya'll. There is a little girl at Duke that needs your prayers. Her family can definitely use them as well! Her name is Zoe Bachman and she had her transplant 6 months ago for a disease called Niemann-pick. Her first transplant didn't take so she had to have a second. The second one was a success but she started having lung problems. At this time she is on the Vent and is slowly recovering. If you would like to leave her family a message, go to www.caringbridge.com, click on visit, and type in zoebachman.
Thank you all for your support. Your prayers and guestbook entries keep us going! We are blessed with wonderful family and friends!
We are still in the midst of greif, but with your prayers, and God's grace, we will endure!
Many Blessings, Richelle
Thursday, May 25, 2006 0:15 AM CDT
Hello friends,
I'm still missing Maddy like you can't believe! I miss her so much at times that my arms ache, and my heart hurts. I long to hold her and kiss her....I long to be with her.
I seem to get through the days. I go on even though there are times when I feel as though I just can't do it anymore. I feel like I've been climbing a huge mountain to sanity since Maddy died, and since we've returned from the Walk I feel as though I've slid down my mountain. Some days I feel like I can't make it back up...and some days I feel like I can. I guess that's greif. People tell me that I can't expect anything from myself, and I'm beginning to believe them. I just need to take it one minute at a time. That's all I can do for now.
I haven't been sleeping well at night. That's when my thoughts of Maddy haunt me the most. I can't seem to be happy when I think about her. Every time she pops into my mind I long for her. Then I get angry, frustrated, sad, lonely...and the list goes on. I lay in bed and ask the "why's", and the "what if's". Then I tell myself that they aren't going to bring her back. It's never ending...I do it every night. I just want her back....I just long to snuggle with her...hold her....mooch her...and enjoy her sweetness. She was so sweet! How do I get past this!?! How do I lose something so precious and keep living life as if I never have? I don't know...I just don't know.
Please continue to keep me in prayer. Please ask the Lord to heal my heart. It's never been this broken. It's never hurt this bad! I want to think of my little girl without going into a depression. I want to be able to think about her and smile. I want to look at her pictures, and be happy that I had her for the 3 1/2 years. Right now I'm just mad that I don't have her anymore. I can't think about anything but her death and my loss. Please pray for me.
Thank you for keeping up with Maddy's web page! I really need the support! Your kind words help me more than I can say!
Lord please heal my heart! Please!
God bless you friends, Maddy's mommy forever
Tuesday, May 16, 2006 3:53 PM CDT
Please pray for me. I am really having a hard time lately. I really miss Maddy! I feel like she should be here with us! I'm not understanding what happened! I just wish she was here!
Thanks for your unending thoughts and prayers!
Blessings, Richelle
Tuesday, May 9, 2006 10:33 PM CDT
We're back!!! It went really well, and the walk made tons of money for the families! Praise God!!!
I'll update with details as soon as the jet lag wears off.
Blessings, Richelle
Monday, May 1, 2006
Well,
We're heading to Durham on Wednesday morning. I can't believe it's already May! Yesterday marked 8 months since Maddy left us. In some ways it feels like it was just yesterday. Some days I have to remind myself that my little girl is gone. Most days I'm fully aware of it, and its heart stopping! Boy is next week going to be a reality check for me...no Moo in North Carolina! Please pray that I do ok being there without her!
Next Saturday, May 5th is the walk. If you haven't already made a donation, please consider doing so. The transplant families really need your help. We have a goal of $5,000, but it wouldn't hurt to exceed that. Even if you can just give $5 dollars...it all adds up!
Thank you so much for your help. I can't tell you what a blessing it is to have so many people fighting for our cause!
I'll update as soon as we return, and hopefully have good news of an amazing grand total! The information about the walk is still below.
God Bless, Richelle
Thursday, April 6, 2006
On May 6th our family (everyone) will be walking in memory of our Queen and all the other children we have loved and lost along this journey (Princess Madi, the Joiner boys, Maddie Trimper, baby Emma, Ashley, AJ, Alex J., ALex, Yosef, Varun, Lane, Cameron, Frannie, Shane, Brandon, and many many more!) The sad thing is, I didn't list everyone! The horrible truth is that there are more children who will be added to it by the end of this year. That's why we need your help.
We aren't even close to finding a cure for all of these kids, and who knows when we will....but, what we can do is help the children and families who are fighing for their lives. You will never know how scary, hopeless, and lonely it can be while in transplant. Most families come to Duke with no money and no place to stay. The only thing they do have is the need to save their child...or children (yes there are families who have 2 or more children in transplant at the same time.)
The proceeds from the walk will go to The Family Support Program. It is a blessing for those who had to leave their homes, jobs, even the country they're from in hopes to find a cure for their sick child.
When we were at Duke for Maddy's first transplant we met an amazing family who came all the way Holland to find treament for their son Dylan. In Holland all the doctors told them to go home and make him comfortable...he was 2! Could you imagine being told that?! They decided that wasn't good enough and began looking for anyone who could help Dylan. Thank God they found Dr. Kurtzberg and she told them to come right away. They left behind everything to come to a country they've never been to so that their child would have a chance.
While Dylan was receiving his care his parents were living in a studio apartment with no furniture, eating potatoes for dinner every night. That's all they could afford! They had no resources...no one to help them. All of their family and friend were still in Holland. As soon as the Family Support Program found out about their circumstances they began giving them gift certificates to grocery stores and Walmart. Because of the program they could bring their son home, feed him, and clothe him for the 9 months that they were in Durham. What a blessing!!!
There are so many families who are in the same situation. Dr. K gives them hope but they need much more than that to survive. Please join me in helping these families by going on line to http://cancer.duke.edu/pbmt/rainbows/donate/ and choose Queen Maddy's Court where it asks you to choose a team.
Please friends! Open your hearts and your wallets to help these families get through the scariest time of their lives!
Thank you for your generosity, your prayers and your love! If you have any questions please email me at rikkilee23@hotmail.com or call me at 909-335-7484.
Many Blessings, Richelle, Joe, Ethan, and our Heavenly Queen
Monday, March 20, 2006 10:15 AM CST
I wish the weekend could last forever! I feel like Monday comes right after Friday with nothing between. Time flies when your with the ones you love. I will never feel like I had enough time with Moo.
I dreamt of her Maddy last night. I really can't remember it word for word, but I do remember her talking to me. I wish I could remember what she said. This is only my third dream of her since she left us. The sad thing is that I always dream of her in the hospital. Why can't I have a dream of her walking with the Lord or walking with me? Its hard to wake up from a dream that makes me feel like I just lost her yesterday.
In my dream she was in PICU, intubated. When I walked in I realized that she had extubated herself on accident and started talking to me. Now, for the life of me I can't remember what she said!!! I do remember Joe walking in and he and I were overjoyed with excitment that we had the chance to hear her talk again...have a conversation with her again! I miss that so much!!! Then the nurse had to re intubate.
For the whole dream she had her eyes open but I can't remember seeing the blue(she had extreemly beautiful blue eyes!). I haven't seen Maddy's eyes since about 3 weeks before she died. I wish things would have gone differently. I wish I could have said goodbye to her! I can't even catch a break in my dream! I miss her so much!
On a lighter note. Everything went well on the 10th! Joe and I flew to Tacoma, Washington where he had a Vasectomy reversal. Everything went well and we will be starting to add to our family very soon! I hope this baby will bring us some new joy, new life, and new hope!
Please pray for the Lord to bless us with a healthy baby. Pray that this new baby will fill atleast a tiny peace of the hole our entire family has since Moo died. Please, please pray for a little boy named Micah who is suffering the same way Maddy was. Pray that he pulls through. If you'd like to stop by his website(www.caringbridge.org/al/micah/index.htm), I'm sure they could use some encouragment.
The Rainbow of hero's walk is coming up very soon. Our entire family will be flying to Durham to walk in honor of our Queen. So keep your eyes open for our next update...and be ready to open your hearts and your wallets to help children and families in the transplant program. So many of you helped us and it made all the difference in the world.
Thank you for all your prayers! Thank you for following our family even after Maddy went home. And most of all thank you for the wonderful words of encouragement and memories of Moo that you so kindly share in our guestbook.
Go hug your kids! Kiss them. Look at their eyes. Smell them. Listen to them. And most of all, tell them you love them. You can never do these things enough. You'll never regret giving your children all of you! But you will regret not giving them enough!
Many Blessing's, Richelle
Wednesday, March 8, 2006 11:43 AM CST
Well,
Off we go to Washington! We have a long weekend ahead of us! Please pray that all goes well...especially on the 10th. We will be in Washington til Sunday and will return home just in time to be with family on Maddy's 4th birthday. That's right, my baby would have been 4 on Monday, March 13th. I so wish she was here. Its going to be a hard day.
Friends, please keep us your prayes as this week continues, as well as when we return. I'm not looking forward to celebrating Moo's birthday without her. I'm sure she'll be having a grand old time in the Lords presence though. I'll be thankful for that! I'll try to update as soon as we get back to california.
Oh, please keep Ethan in your prayers. He has been sick with a sinus infection for over a month now. We are starting a new med today. I feel so bad for him!
Blessings, Richelle
Tuesday, February 28, 2006 3:41 PM CST
Hello friends,
Joe, Ethan and I are haning in. I can't believe March is here! It seems as though the time is flying by faster than it ever has. I'm happy for that as its one day closer to seeing my Lord and my baby. I love life and I love my family, but can you imagine how much more wonderful it will be when we are in Christ's presence?! Not to mention I will be reunited with Moo!
Joe and I are about to begin a new fase in our lives. We are officially trying to add on to our family starting March 10th. Why March 10th? Well, I will share that in time. For now I ask that you be praying for our family. Please pray that the good news of new life will come quickly.
Ethan is still enjoying school, although he's been sick for the past 4 weeks. Please pray that the Lord will touch his little body and heal it completely. The doctor says he has a sinus infection and we are treating it, but it just doesn't seem to be getting any better....no I'm not worried...yet. I'm trusting the Lord to heal his little sinuses and take the cough away. He also had food poisoning or something like that the other night. He only threw up twice and then he was better. I hate seeing him sick at all though!
Joe still hates work. He wants to be home with me...I'm working on that. We sure do have a different outlook on life after what we've been through...family is so important to us! We have had a lot on our minds lately concerning where we live and if we want to stay here. For right now this is where the job is. Redlands isn't too bad but we're just tired of California traffic, smog, and rude people. Please pray that the Lord will direct us to where we need to be when we need to be there.
Thank you for all of your prayers and guestbook entries. Please keep the Joiners in your prayers today as it marks 2 years since they've lost their little bull.
Missing Moo, Richelle, Joe and Ethan
Saturday, February 18, 2006 5:47 PM CST
I miss you today Moo! I just want to tell you that your in my thoughts every minute. I wish I could hold you and kiss you right now. I miss your moochies and lubs. I can't wait to have them again!
I bought an Ariel watch the ohter day at Disneyland. Every time I look at it I think of you. All the little girls at Disneyland were dressed up like princesses. I couldn't help but wonder what dress you would have worn that day. No matter which one you wore, you would have been beautiful...you always were.
Mommy loves you baby girl. I look forward to our reunion!
Lord, please continue to get me through each day without her. I miss her so!
Friends, please continue praying for Joe, Ethan and I. The pain is the same. We miss her the the same as the first day we lost her. I don't ever think that will change. Hopefully one day it won't hurt as much.
Thank you for your faithful prayers, Richelle
Saturday, February 11, 2006 11:12 PM CST
Things are still about the same here. Words can not express how much we miss Maddy. They're aren't as many bad days but they're aren't too many perfect days. To tell you the truth I don't believe life will ever be perfect without her.
Ethan is doing good in school and Joe's still working cuz he has to. I'm trying to keep myself busy so that I'm not consumed with our loss but not too busy that I wear myself out.
We all have had a nasty cold for the past week. I hate being sick, but I've enjoyed having Joe home from work. Sick or not, its nice to have the one you love sitting next to you. That's what I kept telling myself with Maddy. Now don't get me wrong, I never wanted Maddy to have to suffer as much as she did, but I totally believed that she would come out of it. Thats the only reasen why we chose to do the second transplant...or the first one for that matter.
We were given hope and we believd that our God could heal her. We just never thought in a million years that He would take her home. We still trust God, but we now know that we have to trust Him no matter what. He's the only one who see's the whole picture, and He's the only one who gets it. I know I won't until the day I'm in His presence. So I'll just keep trusting that He'll get me through each day with out Maddy until we are reunited.
Thank you all for your prayers. Please keep them coming, and please continue to pray for all those who are traveling the same road as us.
Please also keep Carolyn Wyman's daughter Susan in your prayers. The doctors have diagnosed her with five brain tumors. She has two little girls and is very young. I'm sure it would bless them if you left a word of encouragment on her web site. http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=susanrbanks
Blessings, Richelle, Joe, Ethan and our Heavenly Queen
Tuesday, January 31, 2006 6:13 PM CST
Its been 5 months today since or sweet baby went home. It some ways it feels like it was just yesterday that we lost her, and in others it seems like its been forever.
There's not a day that goes by that tears don't fall. I still struggle with the fact that she isn't here. As a mother I had so many plans for her. I dreamt of putting her in dance and smiling with pride as we watched her first resitle. I still ask God on a daily basis why those dreams will never come true for me, yet I still trust Him and the decisions He's made.
Next month is Maddy's 4th birthday. We dread the thought of it coming and going without her here. Last year we took her to the little zoo they have in Durham and had so much fun. This year I pray that we can remember her as she was when she was well. That seems to be hard these days as the last vision of her in my mind is of her death. I pray the Lord will bless me with wonderful thoughts of our Heavenly Queen, and take away the terrible memories of her last moments here on earth.
Please continue to keep us in your prayers. I don't believe we will ever be the people we were before, but I would like to think that with God we can get past the pain we're living in now.
Please keep all those who are fighting childhood illness in your prayers. Also lift up those who have lost the battle.
Many Blessings, Richelle, Joe, Ethan, and our Heavenly Queen
Thursday, January 19, 2006 11:03 AM CST
For all of those who have been asking about the song in the guest book, it is Held by Natalie Grant.
We are doing ok. I've been having more bad days than good days lately. I miss my Maddy...my perfect little girl. I miss her more than words can express. I long to hold her all the time, and I ache because I know I can't. I just miss her.
To all my transplant families who have lost their baby's, I'm so sorry you have to go through this. I pray for all of you daily. I pray the Lord will bring you peace and calm the ache you have when you can't hold your little one. I wish all of these diseases didn't exsist...I really do.
I miss all of my friends in North Carolina. I hope ya'll are doin' well. I pray that God is blessing you as you have blessed us.
I'll update again soon. Please pray for the Lords grace upon my family. Pray that peace will surround us. Pray that the Lord will bless this year for us and all others who have lost a loved one. Please just keep us in mind every time you talk to the Lord.
Thank you for your prayers, love, and support. Without them we would be having many more bad days.
Blessings to you, Richelle, Joe, Ethan, and our Heavenly Queen
Monday, January 9, 2006 3:56 PM CST
Well,
The holidays have come and gone. We can finally put those "firsts" behind us. Now we just have to get through this year...and I have no doubt we can do it with our awsome God.
Ethan goes back to school tomorrow after 2 1/2 weeks off. I have enjoyed his company so much I wish I could just keep him with me all the time. He is a big boy though, and he needs to be at school with his friends.
Joe is hating work more and more every day. He likes his job and has a really great employer but he just misses Ethan and I...I can't say I don't feel the same. I would keep him home all the time if I could. We were really spoiled having all that time together in North Carolina. We miss that...and we miss Moo.
I'm doing ok. I have to say, Ethan truly has kept me from sitting around feeling sorry for myself. I still have my moments with him here but he's been a wonderful distraction for the most part. I'm trying to talk myself into writing a book. I really want to do it but I'm nervous. I don't even know where to start. There's so much to say...so many stories to tell...so many experiences I can share with other families who are going through what we did. Please pray for the Lord to kick me in the butt if I'm supposed to write this book.
This weekend Joe, Shannon(my sister)and I are going to Sedona, Arizona to scatter my dads ashes. I don't know if I've mentioned it but my dad died 9 days before Maddy. He was 48 and as spunky as ever when a sudden illness took his life. I'm a little nervous about going as I haven't really faced his death. I've been so busy thinking about Maddy that I just don't remember that he's gone most the time. I'm afraid it may make me more emotional about Maddy as well. Please pray for me and my family. I know this will be a difficult trip.
The rest of our family is doing well. Nana and Papa miss Maddy so much. They had so many plans to spoil her rotten. Rachel and mike are doing well...and their kids are growing like weeds...though they are alot cuter than weeds. :) We are all just getting by as well as we can. Our loss is horrible. We miss Moo so much. We continue to go on though as we are promised a reunion with our sweet little girl in a place far more wonderful than this.
Thank you friends for your support. Your prayers and kind words mean so much to us. Please continue to pray for all those still fighting, and for those who have lost their battle.
Please keep Rick and Rhonda Guard in your prayers. They are wonderful friends of the Bates family. They have loved us and supported us through our journey. Now thay have a battle of their own as Rick was recently diagnosed with Alzheimers. We love them dearly and pray the lord will see them through.
Still missing and loving Moo like crazy, Richelle, Joe and Ethan
Tuesday, December 27, 2005 1:14 PM CST
Hello friends,
It looks as though we made it through Christmas. Yes there were alot of tears but we made it. We were together as a family and that helped alot!
We had Christmas Eve dinner at Casa Bates and yours truly presented a very yummy dinner. I made a 10 pound prime rib that smoked up the whole apartment due to the high temp it had to be set at. Note to self: No more prime rib in a small apartment..hehehe! The dinner was wonderful despite the smoke...thank God for fans!
The next morning we woke to find that Santa had eaten almost all the cookies we had left for him. The tree was full of gifts, and it took no time at all for Ethan to rip through them all! He was so cute! I'll post pictures on his site soon. I did do an updat today. Please stop by and wish him a Happy Birthday.
After presents were opened we headed over to Rachel and Mikes to exchange the gifts we had got for eachother. Rachel made us a beautiful quilt with Maddy's pictures all over it. That was a tear jerker...but totally worth it!! Thanks Rachel and Mike! It was the most beautiful gift ever! Carol and Greg had a star named after Maddy and it is in the official star registry in Switzerland...WOW! We'll treasure that forever! After opening all our gifts we sat and talked...and cried. I think it was needed.
At about noon Joe, Ethan and I drug ourselves home and cleaned up the house...actually Joe and I cleaned up the house as Ethan played with his new toys! What i would give to be a kid again! In the evening the Mitchems came over. We snacked on leftovers and watched some movies until everyone was just worn out. Mike was doing the head bob(falling asleep), and Joe went in the room and passed out. It was a long day for all of us. I guees trying so hard to be happy can wear a person down.
Well, I hope all of you had a wonderful Christmas. I want all my transplant family to know that I was thinking of you this Christmas. I pray that you all are finding peace and that the Lord is comforting you during this time.
Happy New Year! Richelle, Joe, Ethan and our Heavenly Queen
Sunday, December 18, 2005 11:44 AM CST
Wow!!!
I'd like to know where the time has gone!!! This year has gone by so fast..and without my permission! Whats that all about?!
With the New Year soon approaching I find myself wondering where we'll be next Christmas. I never thought we would be where we are this Christmas! I definately never thought we would be celebrating it without our little girl. Boy do we miss her! I think this year she would have really known what christmas is all about...I so looked forward to spending many Christmas's with her!
We plan to have Christmas Eve dinner at our house this year. I've decided to change our traditional dinner and start a couple of new traditions to help us make it through Christmas without Moo. I'm hoping that our Christmas is only filled with wonderful memories of our sweet girl. God knows she filled our days with only wonderful things!!! I miss her!!!
Yesterday Joe, Mike, Rachel, and I went dirt bike riding in the desert. We had so much fun...and I am sore...and my butt is bruised from bouncing around so much!! Joe(the pro)took us on some whoopty doo's that tore us up! We had a lot of fun though...despite the sore bottoms..LOL! I didn't cry once the whole day...that hasn't happened since we lost Miss Moo.
We're still missing Maddy very, very much but we keep on keepn' on because of the promise our God gives us! We will see our baby girl again. We will get to kiss her, hug her, and most of all...we will get to see her healthy, happy, and full of life! We miss you Moo!!!
Thank you for all your prayers and guestbook entries! If only I could put into words how it feels to have so much support. Please continue to pray for all those who have lost their children and for those who are still fighting to keep them. We love you!
I hope all of you have a wonderful Christmas. I pray the Lord blesses you in the coming year!
Still missing our Queen here in California! Richelle, Joe and Ethan
Wednesday, December 7, 2005 7:52 PM CST
Ok, ok!
The pictures of Rerella are finally on the Blog Spot. We also put some picture's from Disneyland on there...enjoy!
We are doing ok. The last couple of days have been hard but we're trusting God to get us through them. The Christmas season is starting to get to us. Of course it doesn't help that today is the day Maddy relapsed last year...and the year before she relapsed on December 4th. This month is a hard one any way you look at it! I hope that someday we can have a Christmas where we aren't consumed with thoughts of Maddy being sick!
We are thankful for friends and family as they are helping us get through our first Christmas without our Moo. We only hope that someday we can help another family get through their hard times. We have decided to help give a Christmas to a couple of families at Kaiser this year. We know how hard it was for us to give our children a normal Christmas while Maddy was sick. We are excited to be doing this, especially because we get to shop for two little girls...fun!!
We thank you for all the prayers you've been sending our way. We ask that you continue to pray for us...especially during the Christmas season. Please also continue to pray for all the other families who are trying to get through the holiday's without their little one's. Please also keep praying for all the children who are still fighting the fight!
Missing Moo this Christmas! Richelle, Joe, and Ethan
Monday, November 28, 2005 4:40 PM CST
Hello Maddy Fans!
Two major holidays down and 5 billion to go...or atleast it seems. I think we did pretty good getting through Thanksgiving. I woke up missing Maddy like she had just left us, but after a whole box of tissue and some comforting words from my wonderful husband I got up and got in the Turkey eating mood!
We lounged around the house for a good part of the morning until it was time to get some things in the oven and get ready to head over to Joe's sister's...she had volunteered to cook the Turkey this year. Thanks Rach, the bird was great! I brought the green beans and home made yams(very yummy if I say so myself) and Carol brought the rest. We all came together and thanked the Lord for the blessings He's given and remembered our precious Moo(tears were flowing!).
After dinner we all beached ourselves in the livingroom and proceeded to watch the boys run around like wild children...then Rachel and Joe decided to join in! Poor Papa got it countless times with the nurf gun. Greg, your a good sport...We love you!!! After the kids(Rachel and Joe) were done running around we decided to call it a nite. Actually, Nana and Papa took the boys and we got a nite to ourselves. Whats funny is that we missed Ethan too much to enjoy it!
Friday Joe, Ethan and I were filmed by the San Bernardino Blood Bank for a short film on Maddy. I'll give more details as it comes along. After the taping was wrapped up we spent some time with the Mitchems and headed over to the airport to pick up Rerella! Yes, she's finally here! I started thinking we would never get her but she was well worth the wait! We sat up until midnight waching her play...she's so cute! I'll have Joe post some pictures on the blog spot tonight(click on the link where it says more pictures of Maddy).
Yesterday we decided to go get a Christmas tree and decorate our apartment. We thought the sooner we got it done the sooner we could face our first Christmas without Moo. Thus far its not killing us!
I still miss my little queen every moment of every day! There's not a second that goes by where I don't wonder what I'd be doing with her if she were still here. Most likely we would be cuddling, watching Little Mermaid and drinking Clocklate Milk. I miss her! I keep going though as I'm promised that I will see her face and give her moochies again as we live happily ever after! What a promise!
Moo, We are missing you mostest during the seasons but we know that your happy and healthy...and waiting patiently for us to join you. I can only imagine how happy we will be on that day! We love you Queeny!!!
Thank you for your prayers and journal entries. please continue lifting us up to the almighty. Please also continue to pray for all the other families trying to get through the seasons without there little ones.
Missing Moo more than ever, Richelle
Monday, November 21, 2005 10:50 AM CST
Hello Friends,
Well, we went to Disney Land and had a really good time. The park wasn't very crowded and the longest we waited in line was 40 min(thats good!). Not only did we go to Disney Land but we went to California Adventure as well. For all of you who don't know what that is, it's another park Disney put in right next door to Disney Land.
While we were there we went on a ride called Soaring Over California. It was amazing! We sat in a seat that was raised off the ground and put in front of a large movie screen. The seats move as the film makes you feel like your "Soaring Over California". Wow, California is beautiful! We went over the ocean, San Francisco, orange groves(you could smell the oranges as you flew over them!), Palm Springs, water falls in Northern California...it was beautiful...and we really felt like we were flying! If you ever get a chance to go to California Adventure make sure you ride Soaring Over California.
Now, unfortunately we didn't get Rerella. The morning before she was supposed to get on her flight she got sick. She has a little bacteria in her tummy so the breeder is giving her some meds and preparing another flight in a few days. We are really bumbed but hopefully we will get her by the end of this week. As long as she's healthy we can wait. I think we've endured enough illness to last us a life time!
So all in all this weekend was a good one. We spent some time together as a family! Thats the best thing we can ever do. I sure do miss having us all together all the time!
Thank you so much for your prayers and guestbook entries! I can't tell you what it means to have so many people supporting us! We still miss Moo like crazy! Its not getting better, we're just learning how to live our new life.
Many Blessings, Richelle(Maddy's Mommy forever)
Thursday, November 17, 2005 2:49 PM CST
Quick update:
We are doing well. Ethan is still enjoying school and Joe is back in the groove at work. Me, I quit my job and decided to continue being a mom because that's what I'm best at. I haven't worked for two weeks and it feels great! I visit Ethan at school every day and joined a bible study. It feels so good to do things that make me happy...and being a mommy makes me happiest(especially because it makes Ethan happy)!
Tomorrow Joe and I are taking Ethan out of school and spending the day at DISNEY LAND...YEAH!!!! Rachel, Mike and Caden are going as well...I think its going to be great! Tomorrow night we go to the airport to pick up our new puppy. She's a Brussels Griffon/Pug and we can't wait to get her! She is so cute! We've decided to name her Rerella(Cinderella)in honor of Moo. I will post picture's of Rerella and Disney Land this weekend.
Thank you all for your thoughts, prayers and guest book entries. Please keep them coming! Please also contue praying for all the families who have lost there children and for all those still fighting.
Still missing Maddy here in California, Richelle
Thursday, November 10, 2005 9:00 AM CST
Hello Friends,
What a sad week this has been as this world has lost two more wonderful souls.
Maddie Trimper(www.caringbridge.org/mi/trimpermld) has been running her race for three years and boy what a hard race that was! That didn't stop Maddie! When the race became longer and road became more narrow she just kept running...and her parents were running right beside her! I can't tell you how it pains me to watch these children fight so hard to stay here with us, but the pain will never compair to the day when the Lord calls them home. Maddie's parents have fought so hard to keep their child here. They cheered her on til the very end!
Lane Hancock(www.caringbridge.org/ky/lanehancock) was transplanted about a week after our Queen. He was 24 at the time and I remember Joe and I wondering why a guy that age was on a pediatric floor. Little did we know that he had a pediatric disease...a horrible one. Since Lanes transplant he and his parents have been fighting to get him well. At times everyone thought that the fight had been won until another one would come along. I'll tell ya! Lane is one of the strongest adults I have ever met. I would have thrown in the towel a long time ago. Lane didn't though he trusted the Lord and kept going! Wow! I can only say the same for his parents. They were there with him all the way!
Maddie won her race as she ran into the Lords arms and Lane kept fighting til the Lord called him home! What precious souls! We will miss them dearly!
Please pray for their families at this time. Though they have the promise of seeing their sweet children again, life won't be as sweet until that day.
Thank you friends for your unending prayers! There are days when I feel like I can't even go on but the Lord picks me up and carries me through!
Missing Moo, Maddie, and Lane here in California, Richelle
Wednesday, November 2, 2005 10:00 PM CST
Hello Maddy Fans,
Monday marked two months since Maddy went home to Jesus. We released some pink and purple balloons and watched as they rose up to where she is. I can't tell you that we feel any better today then we did the day she left. I miss my Moo and nothing is taking the pain away. I keep praying that I will be comforted by her memory soon instead of being filled with grief every time I think of her. People tell me it will happen, so I keep holding on to that.
Joe went back to work on Tuesday. He said it felt like he had never left. He also said that he couldn't get Maddy off his mind all day. I wish we didn't have to work. In a perfect world we wouldn't have to do anything but enjoy our family all the time. I miss sitting around with Joe, Ethan, and Maddy all day....just being a family. That was the best...it was perfect!
Ethan is still doing well in school. The last couple of times we've dropped him off he's cried. He says he just wants us to stay with him all day...I wish we could. When we pick him up after school his teacher tells us that he purks up soon after we leave. I think he might be having some seperation anxiety . After all, he has been with us all day every day since he was born. I know he's missing Maddy and that can definately play a part in his morning break downs. I feel so bad for him. I wish I could just make it better.
Please keep praying for us. We are really struggling without our Queen. We miss her so much! Please pray for Ethan's mornings and my nights...and pray for us to be filled with only amazing thoughts of Miss Moo. Pray that they will bring us comfort and peace. Please also pray for our extended family, and friends. Losing Maddy has been a struggle for us all.
Thank you for your guestbook entries! I can't tell you what it means to know that you are lifting us up in prayer. Please keep them coming. I read them everyday.
Please continue to pray for all those who are still fighting for their children, and for those who have lost their children.
Oh how wonderful it will be when we are reunited with our sweet babies again!
Missing Moo with all our hearts, Richelle, Joe, and Ethan
Thursday, October 27, 2005 3:50 PM CDT
I just wanted to tell those of you who haven't heard it already that there is a beautiful song in the guestbook. I want you to listen to it. All of us have been through tough times and/or a loss in our lives. This song is perfect for anything we've struggled with as humans on this earth. Its blessing me and i know it will bless you.
God will hold us friends!!! Through it all we are held. I will update soon.
Many blessings, Richelle
Hello Friends,
Thank you for all the emails and entries that have been sent my way. Thank you for the prayers as well. I'm hoping that someday the prayers being lifted up to Lord will be felt by me. I'm still going to bed at night sobbing and I wake up sobbing. I can't look at Maddy and I can't think about Maddy without being grief stricken. I just miss her so much.
I still cry out to God every night with the hope that He will give me some peace...but it still hasn't come. I can't stop asking myself "what if", and I can't stop wishing that she was here. I wish I could find some happiness that lasts more than a minute. A minute just doesn't seem like enough when its followed by sadness, emptiness, and bitterness. I don't want to feel like this.
Ethan is doing well. He loves school and has made alot of friends...that was long over do! I am happy for him. I'm hoping that my hopes and dreams for Ethan will help me get through the greif I'm feeling.
Joe is doing ok. He has his moments like me...but his aren't as dramatic as mine...Thank God! I don't know how we would get through this without his strength. I know His strength comes from the Lord. Thank you Jesus for my wonderful husband!
I'm going to try attending a support group. I'm hoping it will help...even just a little bit.
I know that my entries have been sad but this is where I can go to say what I'm feeling. I don't want to make anyone believe that everything is fine when its not. It won't be for a long time. I do want everyone to know that even though I feel like this I still trust the Lord. I know that the good moments only come from Him. He is sovereign and He is faithful! I still fall on my knees before Him and I still call on him alone.
Please keep the prayers coming! We need them now more than ever. Please also continue to pray for all the families who are fighting for a loved one....especially a child. Please continue to keep Maddie Trimper, Carolyn Wyman, and all the families who are on 5200. As well as all the families who are learning to live with the loss of their child.
THANK YOU FRIENDS!!!
Still wishing Maddy was here to give us MOOchies, Richelle
Thursday, October 20, 2005 1:33 AM CDT
I miss Maddy so much tonight. I can't sleep and I can't think about anything but her and our last moments with her. I would give anyhting to have her back....I really need prayer. My faith in God isn't helping me sleep, and lack of sleep is making me miserable during the day.
When is this pain going to end?! I've had enough already! I want my Moo and I need peace! I feel extreemly lonely without her hugs and moochies. It seems as though I'm missing her more everyday...its not getting better. I need to get better for my sweet Ethan and Joe. My son still needs a mother and I'm not feeling much like a mom right now. I'm a mess!
Lord, Please give me peace! Please give me the strength to move on without my baby. The moment she left me my world came crashing down! Please help me rebuild it! Please Jesus give me peace!
Prayer wariors, Keep praying for Joe and I. We are broken. Pray for rest. Pray for peace...and most of all, pray for me to trust My savior in everything and stop standing on my human feelings. We all know how confusing those can be.
Other prayer requests: Maddie Trimper (www.caringbridge.org/mi/trimpermld) is fighting for her life right now. She is on a vent and her parents miss her terribly. Please pray for Life for Maddie.
Also, Carolyn Wyman's ( a friend who has defeated cancer once)cancer has returned. She really needs your prayers! She was always encouraging to Joe and I while Maddy was sick. She is an amazing woman with a family who loves her dearly. Please pray for her total healing. Pray that Our Awsome God has a plan for her to live a long life here on earth. Pray for life!
Above all pray for Gods guidance for us all. Pray that His will be done and that we will all trust Him fully...without resevation.
I look forward to the day when we know all the answers. When Gods works are revealed to us and we have a full understanding of them. When we can see our loved ones once again...and when pain doesn't even exsist.
Thank you friends!
Missing Moo Like crazy, Richelle
Monday, October 17, 2005 10:05 PM CDT
Hello Friends,
I know I haven't been updating as often as I used to but we've been really struggling with the loss of our Queen.
We had a nice trip to Oregon. We really enjoyed being with Patty and Nate. I have to tell you though, it would have been a better trip if Maddy was there....its gonna take alot of time before anything is ok without her. We have been living our lives for her since she was diagnosed with AML on March 27, 2003. We are learning a new normal. Its weird not being in the hospital all the time. Hopefully we will learn to accept the new "norm" and learn how to live with the greif we suffer from every day.
Ethan has started school and loves it. He has his good days and his bad days just like Joe and I...but by far he is dealing with all of this way better than we are.
Joe isn't going back to work until November 1st. We just got into our apartment so he is getting everything in order and moving all the heavy furniture in...I knew he was good for something...just kidding. Joe's handling things as well as possible. He misses his girl so much!
I am doing ok. There isn't a moment that passes that I don't think about Maddy. Saying that I miss her doesn't even begin to explain my feelings about her being gone. I wish she was here!!! I want to hold her and kiss her. I want her to say something sweet like she always did. I miss her tenderness, her little attitude, the way we used to cuddle for hours and watch Little Mermaid, Rerella(Cinderella),and many others. I miss every little thing about her.
So, we're doing ok(not staying in bed everyday). We continue to trust The Lord as we always have. I can't say that I don't question Him....but I'm human and I will greive...and keep going as I always have. My hope is in Christ. I know that I will see my little girl again. I know that one day we will meet in heaven and I will hug her and moochie her like crazy. I keep going because of that hope...and because my wonderful son and amazing husband are still here for me to love. Thank you Lord for My family!!!
Please continue praying for us. Please also keep the guestbook entries coming. Although I don't write as often as I should, I check your entries every day as they are very comforting. Thank you for all of you encouraging words!!! We love you!
To all our Duke family, We miss you terribly! We wish we could be closer to you...but the distance will never change how truly special you are to us! We love you so much!!
To our family here in California, We love you and thank you for supporting us and loving us through every step of this. Thank you for letting us greive and holding tight to us when we really need it. We love you!
Maddy, Mommy, Daddy, and Ethan miss you so much! We are sad that we can't be enjoying your sweet voice and adorable smile...but we're glad that you are smiling! We love you Boo Boo!!!
Missing Our Queen More Than Ever, Richelle, Joe, and Ethan
Sunday, October 9, 2005 5:20 PM CDT
We have a new email address. Its down at the bottom of the page.
We'll be home tomorrow evening. I'll update as soon as we get settled. Please pray for our family. We are really missing our Queen. The pain seems to be getting worse every day. What I would do to hold her again!
Please don't stop leaving words of encouragement....we could sure use them right now.
Moo, Mommy misses you more than words can say. You were my light sweety. My everything! All that I could want in a daughter! I love you Boo!!
Keep the prayers coming, Richelle
Hello Friends,
I just wanted to give a quick update. We are doing ok. Life without Maddy is miserable. We miss her more than words can ever express!
Ethan started school last week and he's loving it. He is doing really well! I wish I could be like him. He's so strong and trusting! I'm so proud of him!
Right now we are in Oregon visiting one of our favorite nursies from Duke. We are enjoying some quality time with each other before we have to return to "life". I'll update as soon as we return from our trip...maybe I'll include some pictures.
Missing our Queen, Richelle
Monday, September 5, 2005 11:27 PM PDT
A memorial service to celebrate the life of Madison Michele Bates will be held on Saturday, September 10th, at 1:00 p.m. at the Bobbitt Memorial Chapel, 1299 E. Highland Ave., San Bernardino, CA 92404, (909) 882-3761.
All are invited to attend.
In lieu of flowers, the Bates Family invites you to send donations to the Miracle for Maddy fund in support of the Pediatric Stem Cell Transplant Program at Duke University Medical Center. Checks can be sent made payable to Miracle for Maddy, c/o Rachel Maglio, 3107 N. Arrowhead Ave., San Bernardino, CA 92405.
Wednesday, August 31, 2005 10:26 AM CDT
Dear ones,
It is with a heavy heart that I am posting this entry for Richelle and the Bates family...
The little Queen that we have all come 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. Please keep Joe, Richelle, Ethan and their entire family in your prayers.
Richelle will update with more details soon.
Jesus said: “....in this world you will have trouble. But take heart! I have overcome the world.” John 16:33
We love you Maddymoo!
Marian and Mike Mitchem
Wednesday, August 31, 2005 5:30 AM CDT
PRAY PRAY PRAY!!! pLEASE!!!!! MADDY HEART RATE DROPPED AND HER BLOOD PRESSURE WENT DOWN. THE DOCTORS ARE WORKING ON HER AND WE'RE HEADING OVER THERE RIGHT NOW. I DON'T KNOW WHAT HAPPENED. JUST PRAY!!!
Tuesday, August 30, 2005 12:48 AM CDT
Good afternoon!
Maddy is still doing well...Praise the Lord!!! This morning her oxygen was turned down to 45 percent and she did so well that they are continuing to turn it down. At this moment she's at 42 percent and sating 97 percent!!!!! Yeahhhhh!!! Praise Jesus!!! Her billi went up this morning to 19.2 so the docs have decided to start Apheresis this afternoon. I believe she will have it done today and we'll wait for tomorrows labs to see if she'll need it again.
Praise reports: -Oxygen is being turned down and she is sating 97 percent!! -She is still pooping and peeing and isn't on any diaretics. -Her kidneys are still holding strong. -Her sedation is keeping her comfortable. -Her hemoglobin (blood) is holding strong at 12.4...that's good!!! -Her white count is still holding
Prayer requests: -Billi is going up -fever (maybe from withdrawl) -Slighty elevated heart rate (may be due to fever) -Coags(clotting time)are up....not good. High coags make it more likely to have bleeds. -For her lungs to continue to heal and her x-rays to be as clear as they can be.
Please also pray that the Apheresis goes well and pulls off lots of billi. Pray that her coags will be corrected and that she has no bleeds.
Thank you for standing with us in faith!! Thank you for believing that God is healing Maddy!!
Praise you Jesus for your faithfulness!! Thank you for fullfilling your promises to give her life!!
"I long to see you so that I may impart to you some spiritual gift to make you strong-that is, that you and I may be mutually encouraged by each other's faith." Romans 1:11-12
Still Serving an awsome God.... Richelle
Monday, August 29, 2005 8:25 PM CDT
Praise God Again!!!
Maddy is still doing really well tonight! If she continues to sat the way she is her oxygen could be turned down by morning. Pray for 45 percent friends!!! Maddy also had two stools today ...the first in weeks. The great thing about stool is that it rids your body of billi. Getting rid of billi is good!!! She has been peeing like a champ as well. Infact, she has so much output that they had to come down on all of her diaretics....GO MADDY!!! PRAISE THE LORD FOR ALL HE IS DOING IN MADDY!!!
PRAYER REQUESTS: - Maddy needs to drop her billi. That show signs of the liver recovering. - because they changed her sedation drugs today it is possible that she could have withdrawl. Please pray that she has none and rests comfortably tonight. - Lungs need to continue healing. A new drug was started today to help her vessels carry oxygen through her lungs. Pray that God will use this drug to help Maddy's lungs so that they will continue to get better every day. Also pray that her x-ray will be extreemly improved tomorrow morning. - For her kidneys, heart and brain to continue being strong. -For her blood clotting factors to improve. At this moment her clotting time is 16 seconds and we want it to be 13 seconds. That is another thing that is linked to the liver. -That her platelets will start holding and her need for blood will subside. She is needing platelets every six hours and blood every three days. They both should hold for much, much longer. -That she will continue to be comfortable and rest up for play time she will have when mommy, daddy, brother and nana get their hands on her!!
Thank you, thank you, thank you for continuing to bring Maddy's needs to the throne!! Please continue to pray and believe that God will heal our precious little girl!!! I know He has a mighty plan for her here on earth. Can you imagine the testimony she will have!!!
Praise you Jesus for the mighty work you are doing in Maddy! Thank you for your faithfulness!!! Thank you for renewing us every day!!! Thank you for all the people who love us and pray for us all the day!!! Bless all those who come before You on Maddy's behalf. Bless those who don't. Thank you Jesus!!! Halleujah!!! All glory and honor is yours Heavenly Father!!!
"And we know that in all things God works for the good of those who love Him, who have been called according to his purpose." Romans 8:28
Still serving a miracle working God... Richelle
Monday, August 29, 2005 8:37 AM CDT
Maddy is still doing well on 50 percent oxygen. She had a restful night and is resting well as I write this.
Good news: Maddy's White Count is 2.1 today...and that's without daddy's cells!!!! Yeahhhh!!! Praise the Lord!!!! Her billi (liver count)is up to 13.8 from 12.1 today and her BUN (one of the kidney functions) is up to 70. An ideal billi would be .2-1.2 and an ideal BUN would be 7-21.
Please pray that the Lord will touch her liver and her kidneys. Please pray that He will fill her body with His holy spirit and make them new. Please also pray that Maddy's lungs will continue to heal. That God will breath new life into them.
Maddy is on some high dose steroids to help her lungs but they can cause infection. Please pray that her body will fight off anything that doesn't belong and continue to heal.
Thank you for standing with us in faith. Continue to storm the gates of heaven and beat down the gates of hell!!! God wants life for this child and we are expecting He will give it!!
Heavenly Father, I praise Your holy name. Thank you for the works Your doing in Maddy. Thank you for the renewed strength you give to Joe and I every day! Praise You Jesus for the miracle You have in store for our precious child! Thank you for all the people who love her and bring her name before Your throne every day! I love You Father!
Serving a wonderful God.... Richelle
Sunday, August 28, 2005 9:20 PM CDT
WOW!!!
I can't even begin to tell you how wonderful it was to hold our sweet girl today. When I asked her if she was happy that mommy was holding her she would raise her eye brows. To top it off she gave me eskimo kisses today!!! Thank you Jesus!!!
Maddy was stirring a little more today and our nurse let her because she wasn't fighting the vent. It was so good to see her moving and making faces. The nurse did drug her up a little while we held her so that she didn't get too anxious while being move from the bed to our arms. She did awsome!! Infact she starting satting better in my arms than she did in the bed! Praise God!!!
Keep praying friends! God hears every single word we utter on Maddy's behalf.
Please also remember all the children fighting on 5200 and in PICU. Please lift up Gage tonight as he is having a hard day. He just recieved his transplant on Friday.
Jesus, Thank you for your faithfulness. I will praise your holy name day and night!!! I will praise it out loud!!! You are worthy!!!
"And there arose a great storm of wind, and the waves beat into the ship, so that it was now full. And He was in the hinder part of the ship, asleep on a pillow: and they awake Him, and say unto Him, 'Master, carest thou not that we perrish?' And He arose, and rebuked the wind, and said unto the sea, 'Peace, be still.' And the wind ceased, and there was a great calm."
Mark 4:37-39 KJV
We are thankful for the calm... Richelle and Joe
ps. Go to the link above(more pictures of Maddy)for the pictures from today. And if your wondering...the thick black eyebrows are from one of the meds she is on.
Saturday, August 28, 2005 9:31 AM ET
Oh His Mercies are new every morning!!!
Maddy is now down to 50 percent oxygen and doing good. The nurse(Amy)said that her labs look good and her billi has remained the same. PRAISE GOD'S HOLY NAME!!!
Joe and I are about to go in and see her and are so happy to share with you that we get to hold her today!!! It has been over a month since we have held our sweet Maddy and oh how precious it will be!!!
THANK YOU, THANK YOU, THANK YOU FOR STANDING IN AGREEMENT WITH US!! THANK YOU FOR STORMING THE GATES AND BELIEVING THAT GOD HAS A MIRACLE IN STORE FOR US!!!
HOLY FATHER, THANK YOU FOR YOUR MERCY. THANK YOU FOR YOUR UNENDING FAITHFULNESS!! WE LOVE YOU AND SHOUT YOUR HOLY NAME!!
YOU ARE HOLY, YOU ARE HOLY, YOU ARE HOLY, OH GOD!!! PRAISE YOU, PRAISE YOU, AND AGAIN WE PRAISE YOU!!
He's moving mountains... Richelle and Joe
8-27-2005 9:00 Pm ET Still praising the Lord, for He is still worthy!!!
Today Maddy has been doing so well. We have come down on her oxygen by 10 percent!!! Praise the Lord!!!
More praises to come!!! Keep praying friends!!!
We're believeing... Richelle and Joe
Friday, August 26, 2005 12:29 AM CDT
Dearest Prayer Warriors,
The Lord put it on my heart to tell you to pray. Pray without ceasing!!! Pray for the Lord to open the flood gates of Heaven for us to see His Glory!!! That we might see His power!!! We have come to the point where man can not help my daughter. To tell you the truth man could never help her, for God is the only one who heals. For it is by His stripes we are healed!!!
Please! Call on Jesus!!! Call out to Him all day and all night!! Be on your knees friends....be on your faces!!!God has a mighty plan friends!!!
Carolyn Wyman, God told me to tell you to pray...to pray and believe. When ever I'm weary He reminds me of what He's done for you. He reminds me to pray for life...and I am. I am praying for life and know that you are too. Thank you!!!
Friends, remain in Him all day!!! Storm the gates of heaven all day!! The Lord is calling out for us to cry out to Him. He is the only healer!!!
"Have faith in God," Jesus answered. "I tell you the truth, if anyone says to this mountain, 'Go, throw yourself into the sea,' and does not doubt in his heart but believes what he says will happen, it will be done for him. Therefor I tell you, whatever you ask for in prayer, you have recieved it, and it will be yours. And if you stand praying and you hold anything against anyone, forgive him, so that your father in heaven may forgive your sins." Mark 11:22-25
Still Standing on those very words... Richelle
Thursday, August 25, 2005 10:20 PM CDT
Prayer Warriors...
Please pray for Maddy as she is struggling today. They had to go up on her pressures and oxygen and she's needed alot of sedation to stay calm.
Please STORM THE GATES OF HEAVEN for Maddy. God's word says to pray without ceasing and that's what I'm asking you to do. Continue to pray for her liver to be healed and her lungs to be healed and the rest of her body to stay strong and function 100 percent the way it's supposed to....in the name of Jesus.
Pray for Joe and I as well for God to comfort us and give us peace. Thank you for all your prayers....we so appreciate them!
Philippians 4:4-7 Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Standing in Faith...
Joe & Richelle
Monday, August 22, 2005 11:54 AM CDT
Hello Prayer Warriors,
Thank you for all your prayers!!! I'm sorry that there was a mix up but the prayer session was in Maddy's room yesterday(Sunday). All of you who feel moved to pray for her today at those same times please do. Maddy needs all the prayers she can get.
For all those who came together in prayer yesterday, thank you!!! Thank you so much for lifting our sweet girl up. Thank you for storming the gates on her behalf. We still believe God has a wonderful plan for the Queen! We are still trusting Him and standing firm on His promises!
"He sent forth His word and healed them" Psalms 107:20
"If you remain in Me, and My words remain in you, ask whatever you wish and it will be given unto you." John 15:7
"Therefore I tell you whatever you ask for in prayer, believe that you have recieved it, and it will be yours." Mark 11:24
Please keep standing on faith with us!! We're believing a miracle will happen!
Many Blessings, Richelle
Sunday, August 21, 2005 0:19 AM CDT
Hello Prayer Warriors,
I am writing an update tonight to ask you all to be praying in agreement with us. We are praying and believing that our Almighty God will heal Maddy. Tomorrow at 3:00pm Eastern Standard Time, 2:00pm Central Standard Time, and 12:00pm Pacific Standard Time we will be praying for God to fulfill His promises and do her no harm but give her life.
Please friends!!! Pray with us. I know that our God can heal her. I know and believe He has great plans for her on earth. If you live close to Duke University Hospital and God lays it on your heart to join us in the PICU for prayer please do.
Thank you for all your unending prayers for our little girl. I believe He is waiting to give us this miracle!!!
See you then!!! Richelle
Saturday, August 20, 2005 2:29 PM CDT
Hello,
Joe and I just woke up from a nap as we didn't leave Maddy all night. She continued to worsen throughout the night and into the morning until the Resperatory Therepist got her pressures and oxygen high enough. She is now on at at a pressure of 14 from 9 and her oxygen was increased to 100%. This morning she was down to 50% oxygen and her pressure is still the same.
Please friends!!! Please pray for our little girl! Please pray that God will heal her here on earth. Pray for Him to touch her Liver and her Lungs...and give her body the strength to fight. Please pray that He will deliver her from all this pain and make her whole so that she can have a long life here on earth.
Maddy needs to loose alot of fluid to help her Lungs and her belly is really big. We found out yesterday that she has a virus called Adeno. Please pray that the Virus will be healed and that all unwanted fluid will leave her body. Pray for her tummy to return to its normal size so that her lungs can expand.
Thank you so much for your unending prayers! I know my God can heal this child!!!
Still praying for our miracle, Richelle
Friday, August 19, 2005 8:56 PM CDT
Prayer warriors,
PLEASE, PLEASE, PLEASE PRAY FOR MADDY!!! HER OXYGEN IS LOW TONIGHT AND WE'VE HAD TO GO BACK UP ON HER OXYGEN. IT DEFINATELY DOESN'T LOOK LIKE SHE WILL BE EXTUBATED TOMORROW. JOE AND I ARE REALLY SCARED AS TAKING A STEP BACK IS NOT GOOD!!!
PLEASE PRAY FOR HER LUNGS TO BE HEALED AND FUCTION AS THEY SHOULD WITHOUT THE HELP FROM THE VENTILATOR. PLEASE ALSO PRAY FOR HER LIVER TO CONTINUE HEALING AND HER KIDNEYS TO STAY AS GREAT AS THEY'VE BEEN.
MADDY REALLY NEEDS YOUR PRAYERS RIGHT NOW AS DO JOE AND I. WE ARE REALLY SCARED!!! WE KNOW GOD IS LISTENING AND WE KNOW HE CAN DO ANYTHING.
I AM THE LORD THAT HEALETH THEE... EXODUS 15:26
I WILL GIVE YOU BACK YOUR HEALTH AND HEAL YOUR WOUNDS, SAYS THE LORD. JEREMIAH 17:14
PRAYING FOR A MIRACLE, RICHELLE AND JOE
Thursday, August 18, 2005 12:55 AM CDT
Hi Everyone,
Maddy is doing ok. The doctors are going to try to wean her off the Ventilator on Saturday...boy are we nervous!!! Her liver is still really large and her clotting factors look bad. Her Kidneys look great and her lungs are getting better every day...Praise the Lord for that!!!
Joe and I are pretty tired and are running on empty. I think we could both just lay in bed and not wake up for a couple of days. Man can we use a vacation!!! We are really missing our Maddy. She hasn't opened her eyes for over a week and she really doesn't respond that much. She does throw fits when we change her diaper or mess with her while she's trying to rest. I can't wait til we can cuddle with her!!!
Ethan and Nana are hang'n in. They had a movie date yesteday and saw Charlie and The Chocolate Factory. Ethan loved it and Nana wasn't bored to tears so I think it was a good date. Nana is feeling alot better than last week but her knees are hurting...YUCK!
Please continue to pray for our little queen. She is such a strong little girl and I know that God is holding her and healing her. She had an upset stomach yesterday and was vomiting. Please pray for her tummie to feel better. Also pray for all of her organs...especially her liver!!!!
Thank you for all of your support! God has truly blessed us and continues to bless us every day!
I want to share something from a book I'm reading( "Why", By Anne Graham Lotz). It is a really good book and is helping me get through these long days.
I do not ask my cross to understand My way to see- Better in darkness just to feel Thy hand, And follow Thee.
Boy does that speak to me! I hope it will help someone reading this as much as it has me.
Praise God for all His blessings!!!
Many Blessings to You, Richelle, Joe, Ethan, And Miss Maddy
Saturday, August 13, 2005 11:33 AM CDT
Hello,
Maddy is doing good today. The doctors want to keep her on high pressures until Monday to make sure she is far enough out from the bleed. After Monday Maddy will be the one to tell us how soon she will be extubated. Hopefully she will be truck'n along like she always does.
Joe and I actually got some good sleep last night. We went to bed at 11:30pm and didn't roll out of bed until 11am this morning....man did that feel good!!!
Ethan and Carol are doing well. Carol has been having some pain in her knee and its been keeping her up at night. Last night she took alot of pain medicine and her knee felt better but now she's got a tummy ache because of the meds....it never ends here in NC....LOL!!! Ethan went to see the Vegie Tales at the RBC center in Raleigh and had a really good time. He has made some new friends as well and is really enjoying his time with them. Thank you Mrs. J!!!!
All and all things are going well. Maddy has a really big belly and needs to go #2 but hopefully after some help from stimulants she will feel alot better.
Thanks for all your prayers and encouraging words! Please continue to pray for all Maddy's organs. They continue to get better!!! Thank you Jesus!!!
Praising God, Richelle, Joe, Ethan, and Maddy Moo
Thursday, August 11, 2005 1:50 PM CDT
Hello Prayer Warriors!!!!
Maddy has been switched from the Occilator to the Ventilator and is doing well!!! We are so happy she is doing as well as she is! Thank you Jesus!!!
I'm sure you are all comfused because I told you when this began that she had to be on it for 10-14 days. Well...Maddy is such a little stubborn girl! She was breathing so much over the Occilator that she was working against it. Thats a good thing, but she was pulling too much air into her body and it was getting trapped in her tissue. With the Ventilator she can breath as much as she wants because it works the same way the body would on its own. I hope that made some sense...LOL!
So, Maddy handled the switch really well and her oxygen looks really good. We will just have to watch her x-rays over the next week to make sure she continues to go down the right path.
Please continue to pray for her liver, lungs, and kidneys. The doctors stopped one of the drugs that help her clotting factors so pray that they will keep holding. Please also continue to pray for Asher. His parents say he's doing a tiny bit better today but he still has a long road ahead of him. I'll get his web page posted as soon as I know what it is.
THANK YOU, THANK YOU, THANK YOU!!! YOUR PRAYERS AND WORDS OF ENCOURAGMENT HAVE BEEN SUCH A BLESSING!!!
THANK YOU JESUS!!! I GIVE YOU ALL HONOR AND PRAISE!!! I LOVE YOU!!!
PRAISE THE LORD, Richelle, Joe, Ethan, and Our Miracle
Wednesday, August 10, 2005 1:58 PM CDT
Maddy's doing good!!!! Please keep praying...the Lord is listening!!!! Please pray that her liver, kidneys, and lungs will continue to recover. Please laso pray for her comfort. She has been having some anxiety lately.
I'll do a detailed update as soon as I can get a moment away from the Queen. Thank you for all the prayers and support!!!
Extra prayer requests: Please pray for Carol. She started feeling sick yesterday and we're hoping it isn't the flu. Maddy could get very sick from the flu so Carol is going to the doctor to be tested. We'll figure something out if she does but we'd rather her be healthy for her sake and for Maddy's.
Also pray for a little boy name Asher. He is very sick and is retaining alot of fluid. He could really use some prayers!
Maddy is just getting a high fever as well. Please pray that it isn't anything serious.
Thanks, Richelle
Saturday, August 6, 2005 7:58 PM CDT
Prayer Warriors,
Thank you so much for your prayers!!!! Maddy is stable right now and resting well. This afternoon she was trying to breath over the Occilator so the doctors increased her drugs to keep her in a deeper sleep. Her oxygen and co2 were getting out of control so the Respitory Therepist made some changes on the Occilator and she went back to normal quickly. Throughout the evening they have lowered the settings on the Occilator and she's doing well.
Maddy's liver is still not looking as good as we would like. The doctor attending this weekend decided it would be good to take her off the TPN (food in a bag) for a couple of days to give her some rest....hopefully that will help. Her kidney counts are up but they aren't completely out of control, so hopefully with a break from some of the drugs she's been on and all of the diaretics she's needed to keep the fluid off they will return to normal soon.
Maddy still needs abundant prayer!!! We know she's a fighter and if any one can do this she can!! Please continue to pray for her Lungs, Liver, and Kidneys. They are all sick and really need to get better soon! Thank you soooooo much!!! We are still believing that God will perform a miracle!!!
If you believe, you will receive whatever you ask for in prayer. Matthew 21:22
You are my hiding place, You will protect me from trouble and surround me with songs of deliverance. Psalms 32:7
Still Standing in Faith, Richelle, Joe, Ethan, and Miss Maddy
Saturday, August 6, 2005 9:49 AM CDT
Prayer Warriors,
PLEASE, PLEASE, PLEASE STORMS THE GATES FOR MADDY!!!!! Today her billi(liver count) is worse. Her Kidneys aren't doing well either. The doctors have taken her off some of the diaretics to see if it will give her kidneys a break but that could really cause her to retain alot of fluid and be hard on her lungs.
Please friends, pray for her liver, kidneys, and lungs to be healed in the name of Jesus! Please also pray that the Lord will keep her heart safe and her body strong. Maddy is such a fighter! God blessed her with a strong spirit. I know the Lord can heal her...He can do anything!
Please pray for Joe and I....we're a wreck.
Thank you! I'll update as soon as I have any new information.
Still Believing, Richelle
Thursday, August 4, 2005 8:28 AM CDT
Updated information...11:10 a.m. EST
The doctors think Maddy has a pulmonary hemorrhage. She is once again on the oscillator and in an induced coma(for two weeks). Her clotting factors have not been good, so they will be giving her medicine for clotting. Also, they are going to do a treatment to pull the toxins off her liver.
Prayer Warriors...URGENT PRAYER NEEDED!
This is Maddy's Nana Carol with an urgent prayer request.
After several days of improvement and talk of moving her back to the 5200 unit, Maddy took a turn for the worse this morning and they had to intebate her once again. Her billirubin is up to 19 as well (one of the liver counts). Unfortunately, I have no other details at this time. My son and daughter-in-law were on their way to the hospital when we got the call.
I'll keep you posted as I receive more information. We appreciate your continual prayers for Maddy and our family.
"We do not know what to do, but our eyes are upon you." 2nd Chronicles 20:2
Wednesday, August 3, 2005 10:26 AM CDT
Update from last night:
So, after I wrote the last update we left Maddy and took a break....number watching can drive parents crazy!!! When we returned to the PICU our sweet little girl was being as sweet as ever and boy did it do my heart good!!!
Yesterday morning the attending doctor on 5200 decided that he would decrease Maddy's diaretics...not a good idea. One of the main reasons she is in PICU is Fluid sensitivity. Any time she has any sort of extra fluid her lungs suffer...I think he may have had some drugs with breakfast but we'll keep that between us...he he!!
This morning when I called to see how Maddy is doing the nurse gave me a good report. Maddy's sats are back up and the RT turned her oxygen back down to 40%....and she is up watching her disney moobies!!! I'm so glad she is feeling better! I hate it when she feels yucky!!!
This afternoon Maddy will have a CT Scan to make sure she doesn't have any bleeding on the brain. She has been getting blood transfusions almost every day and because she is on the Defibritide (defibritide can cause bleeding)they want to make sure she isn't having any bleeds. She gets a chest x-ray every day and she's already had an ultrasound and those look good. Praise God!!!
Please pray Maddy's CT goes well and for a safe trip from PICU on the 4th floor to CT on the 2nd floor. Also continue to pray for her liver and her lungs. Pray that the Lord will restore them and make them new.
The Lord is near to all who call on Him, to all who call on Him in truth. Psalm 145:18
Many Blessings, Richelle, Joe, Ethan, and Miss Maddy
Tuesday, August 2, 2005 6:17 PM CDT
Please pray for Maddy!!! She has been receiving high dose steroids for the past two days and is feeling awful. This evening we had to turn up her oxygen because she isn't keeping her sats up and I'm very worried about her. A mother always knows when something isn't right with her child and something is definatly making Maddy feel terrible.
I don't know exactly what to tell you to pray for except for her lungs and liver to keep improving and for the Lord to comfort her and make her feel 100% better. Please also pray for Joe and I....when Maddy feels awful we feel awful!
Thank you so much! I'll update tomorrow and tell you how the Queen is feeling.
Many Blessings, Richelle
Sunday, July 31, 2005 9:39 AM CDT
Dearest Prayer Warriors,
Maddy has made some big steps since the last time I updated. The oxygen has been turned down from 50% to 35% in a 24 hour period and she's holding her oxygen really well. Yesterday her nurse and the RT (Respiratory Therapist) took off her bipapp mask a couple of times to clean her mouth and her face and she did really well. Praise Jesus!!!!!
Now, Where her liver is concerned we're a little nervous. For the past week her Billi has been trending up....not good! The good thing is that her Kidney counts have been trending down, so hopefully that means her VOD is getting under control. So why is her billi going up you ask? Well, it could be a lot of things. For one, she has had tons of Chemo and Radiation, 2) she is on a substantal amount of Antibiotics, Antifungals, Graft Rejection drugs, and the main culprite....The Devil's Juice(TPN). She needs it for nutrition but she's on it 24/7 and nobodys liver can handle filtering food around the clock.
This morning The doctors took the The Devil's Juice down and are giving her fluids in its place to see if it will help her liver. Hopefully a couple days rest is all her liver needs to be tip top again.
Please continue to lift Maddy up to our awsome God! Please continue to pray for her liver to return to normal, her kidneys to stay healthy, her lungs to heal, and for the rest of her organs to stay srong. Thank you so much!!!!
Sweet Jesus, thank you for doing an awsome work in Maddy. Thank you for lifting our family up and carrying us through this journey. Thank you for loving us and for dying for us! Thank you for our little girl and our little boy...what a blessing You have given us!!! Please continue to touch Maddy's body! Please heal her liver and her lungs...make them new! I love you Jesus!!! Amen.
Oh, Maddy's WBC has been between 0.6-1.0. She has also been up and talking to Joe and I. Praise God!!!!
Now to Him who is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us. Ephesians 3:20
Still Believing, Richelle, Joe, Ethan , and The Queen
Wednesday, July 27, 2005 12:32 AM CDT
Hello,
Sorry I haven't updated. Maddy is doing well. She is still in PICU and on bipap. She continues to get better but at a very slow pace. Every day her liver counts go down but her settings on the bipap have been the same for the last couple of days. Her chest xray hasn't improved but it has worsened so we're ok with that for now. She just needs time to recuperate.
Maddy will most likely stay in PICU over the weekend because of her need for oxygen. The doctors are happy with her progress even though it's only little bits at a time and they don't want to push her. She hasn't been in very good spirits and she hates the bipap. We hate to see her so down in the dumps and can't wait to get our spunky little girl back! She does still have a little attitude...thank God!
Please continue to lift Maddy up in prayer. Please pray for her liver enzymes to continue trending down as well as her need for oxygen. Thank you so much for all of your prayers!!! Maddy is going to make it through this! We still believe God has something wonderful planned for her here on earth!
Please continue to pray for Frannie's family, she past away on Sunday. www.caringbridge.org/nc/frannie. Please pray for all the others who are fighting the fight as well.
Still Believing, Richelle, Joe, Ethan, and Our little fighter
Saturday, July 23, 2005 10:50 PM CDT
OK,
Sorry I haven't updated but things have been a little crazy in our world lately. As you know Maddy was taken to the PICU two days ago because of breathing problems again. She is still on the BiPap and she is stable. Every day her chest xray shows improvement so we're headed in the right direction where her lungs are concerned. Unfortunatly she has another problem.
Today the doctors ordered a liver ultrasound to rule out any problems with her liver and ended up finding the cause of Maddy's fluid retention. The ultrasound showed that Maddy has VOD again(Where the blood flow in the liver flows backwards or gets clotted off). Fortunately Maddy had already been on the drug that is still in a study and it helped so she didn't have to meet any criteria for them to start it.
So now we just have to wait for the drug to kick in and do its job. It can take anywhere from 2-6 days to work so it is really important to keep her stable while we're waiting.
Please pray Maddy's liver will recover and the drug will work. Also pray her kidneys will continue to stay healthy and her lungs continue to get stronger. Please also pray for Frannie's family! They have decided to take Frannie off the life support tomorrow at 4pm. She has fought so hard and is loved by so many. www.caringbridge.org/nc/frannie
Thank you all for your prayers and gustbook entries. We are blessed!!! Thank you Jesus for carrying us through this! Thank you for being so faithful. We give you all honor and praise and will glorify you forever and ever!!! Praise you Jesus!!!
Oh....Maddy's 100% donor!!! Thought you could use some good news!!! Again, Praise God!!!
Still Standing in Faith, Richelle, Joe, Ethan, and Our Little Fighter
Friday, July 22, 2005 11:56 AM CDT
Please, please pray for our little Queen! She is headed back to picu due to the fluid.
I'll update as soon as we get her settled.
Thanks, Richelle
Thursday, July 21, 2005 8:43 PM CDT
Please pray for Maddy! She is on Bi-Pap (face mask that forces the lungs to open)because her oxygen was going down due to fluid in the lungs. She has just been fluid over loaded the last few weeks and she really needs the help to keep her lungs from collapsing.
We're hoping for engraftment so we can get her off some of the meds she's on...all the fluid she gets is bad fluid when it comes to her lungs. Joe and I are really having a hard time right now. Please pray for the Lords comfort. We really need to get Maddy over this hump!!!
Please pray for Fannie and her family! This morning she took a turn for the worst. Also, please pray for Kamerons family! They are having to make some really hard decisions today.
Thank you for all of your prayers and all of your guestbook entries. We'll update as soon as we have any new information.
Jesus, Thank you so much for surrounding Maddy with your healing touch. Thank you for giving us every new day with her. Praise You God! I love You!
Glory be to God, Richelle
Tuesday, July 19, 2005 4:56 PM CDT
PRAISE GOD, PRAISE GOD, PRAISE GOD!!!! I GIVE ALL HONOR AND PRAISE TO MY LORD JESUS CHRIST!!! HE IS FAITHFUL!!!
Maddy is officially on 5200 again and it feels great! She is still needing some oxygen to keep her levels where the doctors want them, but in time that will get better. Her xray this morning looked good and all the docs are very happy with Maddy's progress.
When we got settled in our new room Maddy decided she would finally give us the honor of hearing her speak. We thought for sure when they removed the tube yesterday Maddy would be talking like crazy...no such luck! She was so uncomfortable she didn't want anything to do with any of us. When she started talking this morning Joe and I started to cry. Her voice was the most beautiful thing we had ever heard. Just last week we thought we would never hear that sweet sound again. Thank you Jesus!!! We are so blessed!!!
Even though Maddy is doing so well we still have a long road ahead of us. Please continue to pray God will heal our baby girl so she can live a long healthy life here on earth. Please also continue to pray for Frannie and Kameron, and all the other children who are fighting this battle.
Truly Blessed, Richelle, Joe, Ethan, and our Little Miracle
Monday, July 18, 2005 10:52 AM CDT
MADDY'S GETTING ETUBATED TODAY!!! PLEASE PRAY MADDY'S LUNGS WILL BE STRONG AND HOLD UP WITHOUT THE HELP SHE'S RECIEVED FROM THE VENTILATER OVER THE PAST WEEK. IF ALL GOES WELL SHE WILL RETURN TO 5200 TOMORROW AND SHE'LL STAY THERE UNTIL SHE'S ENGRAFTED.
THE NURSE TOOK SOME BLOOD FROM MADDY THIS MORNING TO SEE IF SHE IS ENGRAFTING. WE PROBABLY WON'T RECIEVE THE RESULTS UNTIL NEXT WEEK....SO I'LL BE NERVOUS...LOL! I THINK I'M A LITTLE NERVOUS ALL THE TIME BUT I JUST HOPE AND PRAY SHE'S ENGRAFTED WITH HER NEW CELLS.
THANK YOU FOR ALL OF YOUR PRAYERS! MADDY NEEDS EVERY SINGLE PRAYER SHE GETS!
PLEASE CONTINUE TO PRAY FOR FRANNIE(WWW.CARINGBRIDGE.ORG/NC/FRANNIE), SHE IS STILL FIGHTING AND WE ARE STILL HOPING FOR A MIRACLE. PLEASE ALSO PRAY FOR KAMERON. HE WAS TRANSFERED TO PICU AND IS ON A VENTILATER AS WELL. HE IS HOLDING ALOT OF FLUID SO THE DOCTORS ARE GOING TO TRY DIALASIS. YESTERDAY THEY TRIED TO START AND THERE WERE SOME COMPLICATIONS. PLEASE PRAY IT WORK TODAY SO KAMERON CAN GO BACK TO 5200 SOON.
GOD BLESS, RICHELLE, JOE, ETHAN, AND MISS MADDY
Saturday, July 16, 2005 5:54 PM CDT
Hello,
Maddy is doing really well today. The Venilator has been weaned to 8 from 12 and she has been awake all day. If she continues to do as well as she is we will be back on 5200 by the middle of next week. Things aren't set in stone and things could always go back in a bad direction so please continue to pray for Maddy's lungs, heart, kidneys, liver and her complete healing. We will also be doing a test on Monday to see if she is engrafting. Please pray Maddy has 100% donor cells! GROW CELLS GROW!!!
We are so thankful for all of you prayer's and we know God has heard every single one of them. Praise the Lord for all HJe has done!!!
Please continue to pray for Frannie. She is now on Dialylis to help pull some fluid off her in hopes of helping her lungs. Please stop by her site and leave some words of encouragment. Thank you!!! www.caringbridge.org/nc/frannie
Still Standing In Faith, Richelle, Joe, Ethan, and The Queen
Wednesday, July 13, 2005 6:30 PM CDT
Hello Prayer Warriors!
Maddy continues to get better every day! Thank you Jesus!!! Today she was weaned some more from the ventilator and they will continue to weane her tomorrow and Friday until they feel she can be extibated. The plan for now is to get her Peep (pressure) from 9 to 5 by Friday and then extibate. After she is off the ventilator she will stay in PICU for 24-48 hours to make sure she is doing well without it. Her spirits are good and she has been showing us her pretty blue eyes on occasion. She is such a fighter and such a sweet girl. We knew she could do it!!!
I can’t begin to tell you how hard it has been this past week, but God has carried us through it! Joe and I are so excited about Maddy’s progress, especially knowing how it could have gone. We’ve seen so many children not come back from PICU and it is very scary. We know that all of our friends and family have been lifting us up in prayer and we know our Lord is faithful. Thank you all so much for your prayers! Thank you for lifting us up and standing with us during this entire journey. We are truly blessed!
Maddy, Mommy and Daddy are so proud of you! You have shown us what strength is! We love you so much!
I’ll update as things change.
Still standing in Faith, Richelle, Joe, Ethan, and Maddy Moo
Tuesday, July 12, 2005 9:37 AM CDT
Wow!
I just read all of the wonderful guestbook entries and I feel blessed! God has truly given us a strong support! It is comforting to know so many believer's are out there praying for our little girl! I know that God has his hand on this and I know He is in control and I am thankful for that every second of the day. Praise You Jesus, for you are most high! I exalt you and praise you forever!
In You, O Lord, I put my trust; let me never be put to shame. For You are my hope, O Lord God; You are my trust from my youth. Let my mouth be filled with Your praise and with Your glory all the day. Pslam71:1, 5, 8
Maddy was switched to the ventilator yesterday and is doing really well. Her liver and kidneys are doing better everyday and her lungs are well on there way to recovery. She has been retaining a lot of fluid do to the stress her body has been put under as well as her being immobile. Yesterday was the first day she had more fluid out than in….we’d like to see that for days to come as she has been about 9 liters positive. I know that sounds like a lot, but believe me she doesn’t have 9 liters of fluid sitting in her body, she’s just a bit swollen.
Yesterday morning Dr. K came to see Maddy and said that she is happy with her progress. She also told us that we had to move Maddy’s stuff off of 5200 so that another patient could come in for a transplant. Joe and I had mixed feelings about this but above anything we know that there is another child who needs a cure just as much as our sweet girl. We know when Maddy is ready 5200 will have a room waiting for her.
Please continue to pray for our little Queen! Please pray specifically for her lungs, kidneys and liver. They all need to recover in there own way and they all need to recover to get Maddy better. Again, thank you so much for you prayers and guestbook entries! They mean so much to our family!
Please continue to keep Frannie in your prayers! She has been through so much! Also pray for her mom Viesta! Pray that God hold her and gives her peace! Thank you! www.caringbridge.org/nc/frannie
Still standing in Faith, Richelle
Saturday, July 9, 2005 9:40 PM CDT
Hello Prayer Warriors,
There haven’t been any drastic changes today. Maddy is still stable and doing well on the Oscillator (a gentler ventilator). The doctors continue to turn down the oxygen and Maddy is handling it like a trooper. She did start trying to breath on her own today which could be a good thing and a bad thing. We don’t want her to breath against the oscillator and not get better, but we like to see that she is neurologically able even though she is heavily sedated.
Tomorrow the doctors are going to attempt to switch Maddy from the oscillator to the conventional ventilator in hopes that she will do as well with it. The ventilator and the oscillator do almost the same thing. The oscillator pushes tiny puffs of air at a high frequency keeping her lungs inflated all the time. The ventilator pushes air into her lungs the same way she would if she were breathing on her own. If she continues to do well on the ventilator the doctors will turn the oxygen and pressure down slowly until she can do all of her breathing without any assistance.
We thank you all so much for your prayers and encouraging words. We continue to believe God has an awesome plan for Maddy here on earth. We know that with God nothing is impossible….He is sovereign and faithful!!!
Thank you Jesus for blessing us with Maddy. Thank you for carrying us through all of the trials in our lives. Thank you for all our friends and family who care deeply for us, and for all of those who have never even met us but pray for us. You are an awesome God and to you we give all praise and glory! Lord please heal Maddy’s little body. Restore it and make it whole. We love you Jesus, and we pray this in Your precious name! Amen.
Still Standing in Faith, Richelle and Joe
Friday, July 8, 2005 7:12 PM CDT
Hello Prayer Warriors,
Things are looking better than they were this morning. As I said in the previous update; Maddy had to be sent to PICU (Pediatric Intensive Care Unit) and be put on a ventilator. Before they put her on the ventilator she had to be put in a comic state. To do that they gave her a drug that sedates her and a drug that paralyzes her. She has to be this way so that she doesn’t breath against the ventilator or try to pull out the tubes that are down her throat.
Maddy did really well with the intibation and is resting comfortably but this morning we were still unsure of what the outcome would be. Earlier today we were being told that Maddy had most likely hemorhage in her lung and that her lung was filled with blood. This afternoon the doctors did a Bronchoscopy (a scope that is put down the throat into the lung to find the problem) and put in a chest tube to drain fluid they were seeing on her x-rays. When they did the Broncoscopy they didn’t see anything that would lead them to believe Maddy had a hemorhage. They did drain 350 mls of bloody fluid out of her chest cavity though and believe that was the cause of her labored breathing. So Maddy will continue to remain on the ventilator until she is completely out of the woods.
So for now we haven’t found exactly what is wrong with Maddy but the doctors are guessing that it may be a bacterial pneumonia. This is definitely something that can be treated and resolved! So Maddy will remain on the ventilator until she is completely out of the woods. Please pray that Maddy’s lungs will heal and that she doesn’t have any further problems. Also pray for her liver to continue to heal and for her heart and Kidneys to stay strong. I will write again as soon as I get some results back from all of her tests she had done today.
Thank you so much for praying for Maddy and our family! We are so blessed!
In Christ’s Abundant Love, Richelle
Friday, July 8, 2005 6:22 AM CDT
PLEASE STORM THE GATES OF HEAVEN FOR OUR QUEEN! EARLY THIS MORNING HER BREATHING BACAME LABORED. AT ABOUT 7AM WE HAD TO TAKE HER TO PICU AND PUT HER ON A VENTILATOR. THE DOCTORS BELIEVE HER LUNGS ARE BLEEDING. WE CAN ONLY PRAY THAT THE LORD WILL HEAL HER. PLEASE PLEASE PLEASE PRAY! wE ARE'NT READY TO LOOSE OUR LITTLE GIRL. I WILL UPDATE AS I GET MORE INFO.
LOVE, RICHELLE
Tuesday, July 5, 2005 9:38 AM CDT
Ok,
Maddy's Billi (Liver counts) are still rising and we don't know why. In one week it’s gone from 1.8 to 7.5 (normal is 0.1-1.0) and we're getting pretty worried about it. Dr. Martin has switched some meds around and lowered some of the doses be but it doesn't seem to be working.
Yesterday we discussed giving her TPN (food in a bag) over 12 hours instead of giving it over 24 hours every day. She has basically been getting TPN 24/7 since Transplant, which means her body has been working 24/7 to try to utilize it. Maddy's liver isn't used to filtering food 24 hours a day so we think TPN is what might be causing the Billi to rise. Hopefully we will see a change after making these adjustments.
Thankfully Maddy isn’t having any other problems! Her kidneys, lungs, and heart are doing really well…and her mucousitis is 95% better! Praise God!!!
Please pray for complete healing of Maddy’s liver. Please also continue to pray for Maddy’s complete healing here on earth. We still believe God has a wonderful plan for Maddy on this earth!
Thank you for all the thoughts and prayers! Please continue to leave your words of encouragement in the guest book; they really help me get through the hard days.
Still believing in an Awesome God, Richelle, Joe, Ethan, and the Queen
Friday, July 1, 2005 10:09 AM CDT
PLEASE PRAY FOR MADDY'S LIVER! THE BILLI IS GOING BACK UP. THEY DON'T THINK ITS THE VOD SO THATS A GOOD THING, BUT WE STILL NEED TO BRING IT BACK DOWN.I THINK SOME MEDS ARE GOING TO BE CHANGED AROUND AND IF THE BILLI GOES ANY HIGHER THERE MIGHT BE A COUPLE MEDS ADDED BUT FOR NOW WE'RE JUST KEEPING AN EYE ON IT. EVERYTHING ELSE STILL LOOKS GREAT! PRAISE GOD! THANKS!
lOVE, RICHELLE
Good news from 5200!
The Drug Maddy is on is working! We've seen improvement everyday. Her Kidneys are perfect, her lungs are getting stronger, and her Billi (liver) count is decreasing! We are so thankful for this drug! Also her mucousitis is almost completely gone...PRAISE GOD!! Joe's cells are working!
Maddy is still really tired and is sleeping alot but when she's awake she is fiesty...we love it!!! She is having some bloody noses due to low platelets and boy do they gush! Please pray for no more bloody noses. Please also continue to pray for her liver and her lungs. We still believe God has a wonderful plan for Maddy here on earth!
Sad news from 5200:
It pains me to have to tell you that sweet baby Ashley passed away last night. Her parents had to make the hardest decision they would ever have to make when deciding it was time to remove her from life support. We became very close to Ashley and her mother Angela last year when both of our girls were transplanted. I can't tell you how much it hurts to see another child we were close to not make it. Angela and her family do know the Lord and that will help them get through this but they will definately need prayer. Please pray for comfort and peace for their whole family!
Thank you so much for all of your support and prayers! We are so blessed!
Still Trusting Our Awsome God, Richelle, Joe, Ethan, and Maddy Moo
Sunday, June 26, 2005 4:57 AM CDT
Hello,
Since I last updated Maddy has been feeling yuckier everyday. The mucousitis in her mouth is better but her stomach, throat, and everything in between is in awful shape. The mucousitis is also affecting her eyes and they are swollen shut. She looks like she got in a fight and lost. :) As soon as we start seeing a white count the mucousitis should clear up but its so sad to see her in so much pain.
For the last three days her Billi(liver counts) has been rising causing us to believe that she has VOD(where the blood flows backwords in the liver do to ristricted blood vessels). Dr. K has decided to give her a medication called Defibrotide. This medication is still in a study and hasn't been approved by the FDA, but thankfully Duke Medical Center is one of hospitals that is involved in the study. The drug has shown to be very affective. Praise God for this study!!! Maddy will start the Defibrotide today at 3pm and hopefully it will get the VOD under control right away.
Maddy will also be put on some steroids to help with with a rash she developed yesterday morning and Pantoprazole to help her tummy feel better...the mucousitis has really done a number on her tummy. She will also be put on Amlodapine for her blood pressure. Hopefully within a couple of days she will be feeling tip top! Its amazing what the Lord has given us to treat our Maddy!
We still continue to believe God has an awsome plan for Maddy here on earth! Please pray for all the things I've listed! All of them are equally life threatning. please also keep Frannie and Ashley in you prayers. Their web addresses are in the last journal entry. Thank you so much for your unending prayers!
I will write again as soon as we see some changes.
Still Standing In Faith, Richelle, Joe, Ethan, and Our Little Fighter
Thursday, June 23, 2005 2:33 PM CDT
Hello,
Just wanted to give a quick update. Maddy is doing better. Her mucousitis is still bad but getting better every day. Last night Joe and I finally talked Maddy into going out in the hall. She played some basketball, drove a car, and flirted with Cameron (Maddy's little neighbor).
This morning she decided she was up for some activity again so we took her out in the hall for some more basketball. After basketball she was ready for a drive so she went a few laps then stopped by the family lounge to do some art with Mary Margeret. After all that fun she was pooped out and ready for a nap so we headed back to the room and called it a day.
Please pray that Maddy will continue to want to play as it is really good for her lungs and muscles. Also pray for her mucousitis to continue healing...it is very painful!
I have a special prayer request for two little girls on the unit. Asley Rodrigues, was transplanted last year with Maddy and is having many complications. A few days ago she took a turn for the worst and is in the PICCU. Please pray for Ashley and her family. Her web site is www.caringbridge.org/ny/ashley.
Also pray for Frannie! She was transplanted in February and has suffered from Kidney and liver problems. She was also taken to PICCU do to complications. Her web site is www.caringbridge.org/nc/frannie.
Thanks for all the prayers and support!!!!
Still standing in Faith, Richelle, Joe, Ethan, and the Queen
Tuesday, June 21, 2005 6:45 PM CDT
Just a quick update:
Maddy has mucousitis (sores in her mouth, throat, and stomach) really bad right now. She is on oxygen because her airway is resticted due to the gunk that builds up from it. She is uncomfortable and tired, and wants to eat really bad...and does even though it hurts. Of course its not much because after a couple of minutes she just can't stand the pain. We feel so bad for her! Please pray for the mucousitis to cease so that our little queen will feel like herself again!
Thank you for all of your prayers! I'll write again soon.
In Christ Alone! Richelle, Joe, Ethan, and the Queen
Friday, June 17, 2005 11:21 AM CDT
Hello All,
Sorry It's been a few days. I would like to give an update every day, but it seems like the updates are done when the Queen allows them do be done.
The last couple of days have been good and bad. Maddy's mucousitis and sore booty have gotten better but she started itching and we're having a hard time getting that under control. Her arm is also getting a little better every day and hopefully it will cntinue to do so this week. Unfortunatly the meds that are keeping her arm comfortable are what's causing the itching. We have switched around some meds and added some Revex (med to help the itching), and Benedryl so hopefully the itching will cease.
Joe stayed on 5200 with the Queen last night and got no sleep at all so it looks like he won't be staying with Maddy until she starts sleeping through the night. I'm sure she will do that when all of these issues are resolved. I got to stay in a normal bed for the first time in a week and it felt so good....I didn't wake up once! I feel really bad for Joe but I'm happy I got the sleep I've needed.
Joe's line is feeling much better now. He has a little bone pain from the GCSF but other than that he's been a trooper. Ethan is enjoying his company from California! Marian and Mikey keep him busy so he's not sitting here in the hospital loosing his mind. Thanks Marian!
So, we're still trucking along and trusting that the Lord will get us through this once again. Thank you for all your prayer! Please continue to pray for Maddy's complete healing here on earth!
Standing in Faith, Richelle, Joe, Ethan, and Moo
Friday, June 10, 2005 6:55 PM CDT
Tuesday, June 14, 2005
Well, Transplant is done and it went well! Maddy fell asleep about 10 minutes before she got her cells and slept all the way through it. So needles to say transplant was very uneventful...yeah!
Joe will get his GCSF shots tonight and tomorrow he will give granulocytes for Maddy. We are very happy she'll be getting them soon as she is already getting mucositis (mouth sores), and a rash on her behind. As soon as she gets Joe's cells both problems should get better.
Thank you for all of your prayers! Please continue to pray for Maddy"s complete recovery. Please also pray that the Leukemia never returns.
Until tomorrow, Richelle
Monday, June 13, 2005
Maddy has been feeling pretty crummy since last night. She woke up with severe bone pain in her right arm and needed drugs every couple of hours to keep it away. Please pray that we can figure out whats causing the pain so that it can be fixed. Madddy and I haven't gotten much sleep and both of us are a little grumpy...ok a lot grumpy...LOL!
Maddy has also lost her appitite and will have to be put on TPN (food in a bag) tomorrow. She has lost 3 pounds sice last week so it will be nice to see her getting plump again. Please pray that she will regain her weight and her appitite soon so she won't have to be on TPN for too long.
Tomorrow's the big day and we are praying it will be her miracle!!! Thanks for all your prayer's! I'll update again after the transplant.
Love, Richelle
Sat. June 11, 2005
So far so good!! Maddy's feeling good and eating well. Please continue to pray for the Queen. Please add her liver, Kidneys and lungs to your prayers as well. Cytoxan (chemo) and Radiation can be really hard on those organs. Thanks!
Until Tomorrow, Richelle
Hello Prayer Worriors!
Well, We're up on 5200 and all is well so far. Maddy had 9 rounds of TBI (total body iradiation)and she did really well! She had no nausea and is feeling good! She is tired though.
The plan for transplant is still the same. She will recieve two doses of chemo this weekend, then on Monday she will get a day of rest. While she is resting Joe will be getting a central line placed (toobies) so that he can donate his Granulasites (fighter cells) in hopes of keeping Maddy from getting any infections. Because this is Maddy's second transplant she is more at risk for infection due to prolonged low counts.
At this moment Maddy has a WBC(White Count) of 0.1. A normal WBC for a child should be between 7.0-14.0. So Maddy has a very low count and soon she will have none. This is what we want to see as we don't want the new cells to have to fight harder to make them selves at home.
All is well for now. Maddy is sleeping peacefully as I write this and hopefully she will be rested and ready for her chemo tomorrow.
Please pray that Maddy has no side affects from the chemo (nausea, vomiting, water retention, and mouth sores). Please also pray that the Leukemia is totally iraticated from the body and that the new cells will give Maddy the cure we've been praying for!
Thank you so much for your powerful prayers!
Still Standing in Faith,
Richelle, Joe, Ethan, and The Queen
Saturday, June 4, 2005 2:49 PM CDT
Good morning Prayer Warriors,
Maddy starts her TBI in about an hour. Please be on your knees in prayer for our little Queen! Please pray that Maddy won't have any side affects from the treatment. Also pray that it rids her of all the Leukemia in her body. Please pray that she doesn't experience any nausia as well.
Thank you so much for your prayers! I know we can get through this!
Praying, praying, and praying, Richelle
Hello Friends,
Maddy had her second line (toobies) placed yesterday for transplant. This time they put a double lumen in instead of a single but it looks good. Maddy is feeling pretty good in spite of the wounds she has from the line placement. We just make sure she has enough pain meds to keep her comfortable...she doesn't need much.
Monday she will start her Radiation and we are very nervous. I can't believe she will be loosing all of her beautiful hair! I know it will grow back again though. Please pray for Maddy to be healed with this next Transplant. Also pray for the Radiation to do its job without hurting our baby girl.
Thank you for all your prayers! I have to go hug on my princess right now!
Still believing, Richelle, Joe, Ethan, and Moo
Thursday, May 26, 2005 8:16 AM CDT
Prayer request: May 29,2005
Maddy was addmited to the hopital last night for a fever of 104.7. She had some cultures drawn and they all came back negetive so we believe its from the dying Leukemia. Her fever is gone now but the doctor on call still wants to keep us here for a few days...we are not happy about this and do not agree. We feel that Maddy should be released in the morning as she will have been watched for two nights.
We have had some issues with this doctor in the past and know that he will not listen to us and makes his own decisions concerning Maddy's care without consulting us or Maddy's doctor.
Please pray that Maddy's fever will stay away and we can take her home in the morning.
Richelle
Hello friends,
Yes it has been a while since I've updated but I've been waiting to see where things with Maddy's treatment were heading before I gave any info. It pains me to have to tell you all that Maddy will be going in for a second transplant on June 14, 2005. We tried all we could to get Maddy well with DLI, but it just didn't work.
Monday morning Maddy started a round of Chemo that will last until this Saturday. She has done really well and has had no side affects....PRAISE GOD!!! Next week she will have all her tests done to make sure all of her organs are healthy enough to move on with the transplant process. Since transplant is so hard on her organs Dr. K has to make sure everything is in tip top shape before we start anything abrasive.
Monday, June 6th Maddy will start TBI (Total Body Irradiation). She will have 9 sessions of TBI over four and a half days then be admitted to 5200 hundred on Friday, June 10th. On Saturday she will receive her first dose of Cytoxin (Chemo) and on Sunday she will get the second dose. Monday will be a day of rest, and then Tuesday she will receive her new cells. Since we used Ethan’s cells for the first Transplant and they only lasted for 10 months we have decided to go with an unrelated cord blood donor for this transplant. Dr. K has already chosen a cord blood donor for Maddy and it is ready and waiting to give our little girl new life.
This has been a long battle for us and to tell you the truth Joe and I are weary, but we know that in our weary times our God will carry us as He always has. We just keep praying that God has a magnificent plan for our child on this earth.
I want to thank you all for your prayers and support! Please continue to fall at the feet of Jesus in prayer for our little Queen. Every night Maddy asks Jesus to heal her and every night we believe that He will! We will continue to believe that our God has a long life filled with wonderful things planned for Maddy!
In You, Oh Lord, I put my trust; let me never be put to shame. For You are my hope, O Lord God; You are my trust from my youth. Let my mouth be filled with Your praise and with Your glory all the day.
PSALM 71:1, 5, 8
Let us hold fast the confession of our hope without wavering, For He who promised is faithful.
HEBREWS 10:23
Still Hoping and Believing, Richelle, Joe, Ethan, and The Queen
Thursday, May 12, 2005 7:58 PM CDT
New Pictures!!
Hello,
Sorry I haven't updated in a while. We are now over the Disney World experience and are just ready to get Maddy well. We will definately take the kids back on our own after Maddy is done with treatment.
Maddy is doing good. She received her brother's cells again this Tuesday and it went well. Ethan was a trooper of course and Maddy had no reactions. We are just going with the flow right now and hoping for the best. Please pray that Maddy will come through this with flying colors as we've been praying for so long! Also pray that her liver stays healthy and her spleen returns to normal(the Leukemia has made it large).
We thank you for all your love and support and hope we will see all of our family and friends real soon!
Still living on Faith, Richelle, Joe, Ethan, and MAddy Moo
Thursday, April 28, 2005 8:05 AM CDT
You can see pictures on the link above!!!
Ok, now I'm rested enough to tell you all about our trip. I'll start at our arrival at Orlando Airport. Everything was going great! Right when we landed we called Rachel on her cell phone to see where they were....we could hardly wait to see them! They had already landed and were waiting for us just past security....did I tell you how excited we were to see them...LOL!
So after we all hugged and composed ourselves we headed over to baggage claim and car rentals so that we could be on our way. Thankfully a lady from the Florida Make-A-Wish was there to help us find everything. She was a huge help as we were in our cars and on our way to the Hotel within about an hour....and the Orlando Airport is HUGE!!! Before we left the parking garage Joe pulled out the map that NC Make-A-Wish sent with us and made sure he knew exactly where we were going before we started driving. Unfortunately, that didn't do us any good because the map was wrong. When we got off of the free way it had us go the wrong direction. Thankfully Joe is good at direction and he figured out how to get us there on his own.
As we pulled up to our Hotel we started to laugh. It was not what we had expected at all! It was an orangy/yellow color and had a huge pineapple on the top...LOL! Plus there was road construction going on around it...YAH! We decided to be optimistic and go in as it had to be nicer on the inside...NOT! The entrance wasn't too bad but the rooms are a different story. There was mold on the bathroom walls, the refrigerator was dirty, and there were stains on the bedding...and I'm not going to even begin to guess what they were from...YUCK!!! We decided to make the best of it anyway and we headed out for dinner at Down Town Disney.
While we were eating dinner Maddy started to bleed from her gums. We got it to stop for the night but we knew that she would need platelets the next day so when we woke up in the morning we headed over to the hospital where she was scheduled to have platelets during the week. When we arrived there we waited for about an hour before anyone even talked to us…then the doctor came in and told us that because of insurance problems it would take about five hours for Maddy to get her platelets unless we went down to Kids Stop (where children go before and after surgeries) to get them. We opted for Kids Stop as we were told that it would only be about 2 hours. I guess 2 hours at that hospital really means 9 hours because that’s how long we were there!!! They took their sweet time! To top it off Maddy started bleeding pretty bad from her gums and they didn’t seem to care at all. They still took their sweet time…even when she started throwing up from swallowing a bunch of blood. Maddy was so upset that she cried herself to sleep.
When we finally left the hospital we decided we would head over to MGM to get a couple hours in before the park closed. We arrived at MGM about an hour and a half before it closed so we went over to Guest services to get our Fast Pass (the pass that gets us to the front of the lines) and the man at the desk refused to give it to us…YAH!! When we asked him why, he told us it was because we weren’t at Give Kids the World (where the kids from the wish programs usually stay). We told him why we didn’t stay there and he still refused to give it to us. After arguing with the guy we all stormed off as the kid’s cried cuz they wanted to go in. I got on my phone and called a lady with Make-A-Wish Florida and told her how cruddy our day was and how unhappy we all were. She took down the name of the guy at MGM and told me that the next day would be better. Again we decided to be optimistic and headed up stairs for some R&R…and a couple of margaritas…LOL!
Thursday morning we had an early start as we wanted to make an appointment we had to meet Ariel (the Little Mermaid) at Magical Kingdom at 9:30 am. We made it to our appointment and met a very nice lady who works for Disney and volunteers for Make-A-Wish. She took us to see Ariel and all the other princesses. Plus Maddy and the boys got to meet Donald Duck, Goofy, Pooh, Tigger, Eyore, Minney, and Mickey. They were so excited but also very nervous. Maddy would clap and sing because she was so happy to see the princesses, but as soon as she got up close she would clam up….it was very cute! After meeting all the characters the MAW volunteer got us a stroller for the boys and a Fast Pass then said good bye…she was so wonderful! We had a very good day at Magical Kingdom thanks to her.
Ok, so there’s the first half of our 4 days in Orlando. Let’s just say that the second half was about the same. We had another horrible day at the hospital on Friday. Saturday wasn’t too bad if you don’t count the rain and the call Mike got informing him that his mom was hospitalized. We have never been happier to get back to NC! Although we do miss Mike, Rachel, Caden, and Reagan very much! We wish we could have spent more quality time with them…without the stress.
So there’s our trip. We defiantly plan to return to Disney World when Maddy doesn’t need Platelets so we can take our time strolling through every park. As for where Maddy is in her treatment: We are gave her a dose of Mylotarg last week and she receive another dose next Tuesday. She had a reaction to the last dose and was admitted for a couple of days on 5200. Please pray that she doesn’t have any reaction on Tuesday. The Mylotarg has made her Blasts (Leukemia) come down so we’re hoping that Ethan’s cells will have a chance to do what they need to.
Please pray for Kris Maiz - he's a young man (son of a friend) who has a tumor on his spine. He goes into surgery next Tuesday, May 3rd to have it removed. Also pray for Mike’s mom. She is missing mike’s dad who passed away last year. She is also having some issues with her health. Pray for Mike as well.
We thank you all for your unending prayers and support. I will try to do a better job of updating.
Still Trusting Our Lord, Richelle, Joe, Ethan, and Miss Maddy
Tuesday, April 26, 2005 8:00 PM CDT
So you want to know about the trip? Well, its a very long story...and its not what we hoped we would be telling you when we returned from The Happiest Place on Earth.
Maddy is doing well and all is well with our family. The trip on the other hand was terrible. I am very tired tonight and promise to do an update telling all first thing in the morning. But for now we are so glad to be home in our own comfy, CLEAN beds!!!
Until tomorrow,
Richelle
Friday, April 15, 2005 9:00 AM CDT
Hello Friends,
I wanted to drop a quick note to tell everyone that we are offically leaving for Disney World on Tuesday, April 19th. We are so excited!!!! What makes it even better is that The Maglio's will be joining us. I can't wait to be there! I can't wait to share this experience with my children!!! I will make sure to give all the details fo our trip when we return. Please pray that Maddy doesn't have any bleeding problems while we're there.
I want to take a moment to thank the person who made Maddy's web site as beautiful as it is. I'm sure you can hear the song that is playing. There is another one on the guest book page. Both of these songs mean a great deal to me and I am so happy to have them on Maddy's site!
Brenda, Thank you so much for making Maddy's site so special! What a wonderful gift!!!
I will update as soon as we return...and yes there will be lots of pictures of the Queen with all of the princesses!
God Bless, Richelle
Wednesday, April 6, 2005 12:03 AM CDT
Hello Friends,
Maddy is getting back to her normal little self again...YEAH!!! She and Ethan got to have a play date for the first time in many months and Joe and I enjoyed some adult conversation. I think all of us just needed some normal interaction with people.
Maddy's bleeding seems to be under control a little more but we still have to be very careful about what she eats so that she doesn't scrape her gums. Thank you for all your prayers! I know they are working.
Yesterday Ethan gave his blood to Maddy again and it went well. Maddy got 80 MLS of Ethans blood to make up for the loss from the past two weeks. With Ethan having such a hard time we could only get about 40-50 MLS last week and the week before...and she definately needs more than that to kick Leukemia butt.
We will meet with the Make-A-Wish people this Friday to talk about Maddy's wish...We're so excited!!! Every day when we get in the car Maddy asks if we are going to Disney World and every day we tell her that it won't be today. She is very patient though as she sweetly tells us that we will be there soon. She is so cute!!!
At this time we are trying to make it possible for Rachel, Mike, Caden and Reagan to be at Disney World with us. Please pray that this will be possible! What a gift it would be to spend time at the most magical place on earth with 4 of the people that we love the most...and miss so much!
Thank you all for your prayers and words of encouragment! It means so much to us! I'll try to update as soon as we find out about Maddy's Make-A-Wish.
Love to all, The Bates family
Thursday, March 31, 2005 5:34 PM CST
Quick prayer request:
Maddy is having bleeding problems lately. We just can't seem to get it completely under conrol...YUCK!!! Today she is bleeding from her gums and it won't seem to stop. Please pray that the bleeding with cease! Also pray that she starts feeling happy. She just isn't her normal spunky self. Thanks for all your prayers!
Love, Richelle
Thursday, March 24, 2005 4:23 PM CST
Quick Update,
We received the results from the FISH test and it looks about the same as a month ago. So it looks like we are still playing the waiting game...I think we're getting really good at it...LOL!
Good news is that Dr. K said that we can do Maddy's Make-A-Wish as soon as we want. In fact she wants us to do it as soon as possible since we don't know if or when we will have to go the transplant route. Maddy and Ethan have chosen to go to Walt Disney World and we are very excited! Maddy wants to go to Cinderella's house and Ethan just wants to go on a lot of cool rides. I'm sure we'll have a blast!!!
Please continue to pray that the DLI will start to work so that Maddy doesn't have to return to transplant. Joe and I really don't want to have to put her through that again but if that ends up being her only hope then we'll have to.
Thank you for all of your love and support! I will update as soon as something new comes along.
Still full of hope and still trusting our Lord, Richelle, Joe, Ethan, and The Queen
Friday, March 18, 2005 6:17 PM CST
A quick update:
We haven't gotten the results from the FISH test yet. We did get a blast count today and it was 20 ..that's about the same as it has been. Maddy is doing really good despite the fact that she has Leaukemia and she looks great. She is active and full of energy and we are greatful for that!
Our house is empty and ready for the new owners to move in. We are glad that its over so that we can just focus on Maddy but we're sad that our first home isn't ours any longer. We are happy that we're together...that's all that matters to us!
I want to thank all the people who helped move all of our stuff out of the house. Rachel, thank you for packing up my kitchen...that had to be a chore. Carol and Greg, thank you for getting the uhaul and the storage unit so that our things had a place to go. Lee, thank you for helping - you have done so much for us! Rick, thank you for helping on your day off; I'm sure you've had enough of Greg by the end of the work week...LOLOLOLOLOL!!! Mike, Marian and Linda, thank you for taking time out of your busy schedule to come and help with the packing. If I'm missing anyone please know that we apreciate your help. We love you all!!!
I will update as soon as we get the results from the FISH. Please pray that it will look great!
Lot's of love, Richelle, Joe, Ethan, and Maddy Moo
Sunday, March 13, 2005 7:30 AM CST
Wow! We can't believe our little girl is three today! We are so blessed to have her here with us!
I remember the moment she was born. We were so happy! We had our little boy and we were welcoming a little girl into our family...it was so exciting. I can't even begin to tell you how many wonderful plans we had for our family. We were on top of the world and no one could bring us down.
The whole year following we enjoyed watching Maddy change and grow. She had the best personality from the moment she was born and it just kept getting better. We loved to watch her and Ethan interact with each other. They were always hugging and kissing and laughing with each other...and Ethan loved her so much...we could tell just by the way he would look at her. He used to climb up on the couch with her and put her on his lap and start rubbing her face...talk about the best things in life! We could have never imagined what was about to tear all those dreams apart...or at least change them.
Just one week after her first birthday we received the devastating news that our little girl had Leukemia. Since that day we have been fighting the hardest battle of our lives in an effort to get Maddy to her next birthday...and we have been blessed with two more wonderful years. Praise God!!!
Today we will have a little birthday party for Maddy. Nana and Papa flew in from California so that they could celebrate another year with our little queen and we are so happy they are here. Though it will be a small celebraqtion in size, in our hearts it will be huge!
I want to thank all of the Maddy fans for your love, support and prayers. We so appreciate everything you've done for our little pumpkin, and hope that next year you will all be joining us us for a huge celebration!
Maddy, mommy and daddy love you so much and we are so thankful for all the sweet moments you've given us. Everyday is a precious one with you! Happy Birthday sweet baby!
Joyful today in North Carolina, Richelle, Joe, Ethan, Nana, Papa, and the birthday girl
Tuesday, March 8, 2005 11:46 AM CST
Hello friends,
I feel much better today as Maddy's Blast count has gone down. Friday her Blasts we're up to 27
Tuesday, March 1, 2005 8:46 PM CST
A couple of quick prayer requests:
Maddy's Blasts are continually going up. Please pray that they will start going back down. Also, a family friend (Rick Guard) is have some medical issues. Please pray that they can find out the cause and that it will be something minor that can be fixed! Thank you! We so appriciate your prayer's!
Love, Richelle
Hello friends,
I am so pleased to announce that our niece Reagan Paige Maglio was born on Saturday, February 26th. She weighs 8 pounds and is 20 inches long....and she is so beautiful!!! Her parents are thrilled and her big brother is excited to have his new title (Big brother).
Rachel and Mike, we so wish we could have been there to celebrate with you. We are celebrating here though as we are thrilled that we have a sweet little niece! We love and miss you so much and can't wait to meet the new addition to the family!If anyone wants to see pictures of the little angel they're posted in the photo album.
As for Maddy, she is doing well. We are still playing the waiting game and we will be for a while. That's the way it is with this disease. We are patiently waiting for our miracle to come along.
Yesterday we were happy to get a visit from little Emma (www.caringbridge.org/ca/emma/index.htm), she was transplanted the same time as Maddy. We were very happy to see her! She is doing so well and she is spunky and happy. Emma, we are so proud of you! You are such a fighter! We will be praying that you will continue to do well and hopefully when we get our Miracle we can come visit you in San Francisco. Thank you for the great shirts! We will wear them often.
Thank you all for your love and support! Your unending prayers are such a blessing!
Still hoping here in North Carolina, Richelle, Joe, Ethan, and our little fighter
Thursday, February 24, 2005 9:38 AM CST
Hello Friends,
Sorry I didn't update on Tuesday but there wasn't much to say. Maddy didn't receive any of Ethan's cells this week as she now gets them every other week. Her cells and Blasts haven't changed much but that's to be expected. We won't see any real progress for 4-6 weeks. We have seen some progress though and are very thankful for that. Maddy's Leukemia isn't gone yet but it's under control for now. We hope to see the Blasts disappear in the next couple of weeks.
The past couple days have been beautiful! It's been about 65 degrees and we've been enjoying the warmth. Tuesday was our long day at clinic so we didn't get to enjoy the nice weather but yesterday with Maddy tanked up on Platelets we had a chance to take the kids to a really nice park in Raleigh. We had a really good time...until my accident.
We decided to put Maddy in the stroller as the park is really big and we knew she wouldn't walk the whole thing...and we didn't want to carry her!:) We were almost finished walking the whole park when I lost my footing coming down a bridge. I couldn't catch myself because I was pushing Maddy and would have had to let the stroller go...we all know what could have happened if Maddy went flying down the bridge...so I chose to spare her and in turn I tore the ligaments in my left ankle. Man did that hurt...I was crying like a baby...IT REALLY HURT!!!
After I was done whaling Joe helped me up and started laughing...and as he laughed he tried to describe to me how funny I looked while trying to save Maddy and myself...then I started laughing. We laughed for about 10 minutes before we could compose ourselves and get me to a bench to sit down. I wanted the kids to be able to play some more so I sat on the bench for about an hour while Joe played on the playground with Maddy and Ethan. After about an hour the pain was getting worse so we decided to go home and call Dr. K and ask her what I should do. I ended up going to Duke's Urgent Care where after some x-rays they told me that I tore my ligaments...no wonder why it hurt so badly...LOL!
So now I have to stay off my feet until the pain is completely gone and baby my ankle for about 3-6 weeks...Joe is going to be sick of me by the time my ankle is better...LOL! There is one upside to this. Our friend Dora will be arriving in NC just about the time I'll need some PT and she is a Physical Therapist. I'll have my own personal PT...yeahhhhh!
So besides all my drama everything is going well here. Maddy is still fighting that cough and she is still having problems with her gums bleeding. Please pray that we can gain some control over the bleeding and that her cough goes away completely. Thank you so much for all of your prayer's and support!
I would like to send out a special thanks to Century 21, Lois Lauer Realty. All the realtors in their office give a portion of their commission to a fund that has been set up to help various charities and every so often they vote on where it should go. Freda England (our realtor) nominated us last month and when they voted we were chosen to receive the gift!!! Thank you so much Louis Lauer Realty for your gift!!!
Please stop by Princess Madi's site. Today would have been her 4th birthday and I'm sure Mike, Marian, and Mikey could use some support.
Next Tuesday Maddy will receive another dose of Super Ethan's special blood. Please pray that his blood will be her miracle!!! We are still hopeful!!!
Then He Spoke a parable to them, that men always ought to pray and not loose heart. Luke 18:1
Still Living on Faith, Richelle, Joe, Ethan, and the Queen
Wednesday, February 16, 2005 1:20 PM CST
Saturday, Feb. 19, 2005
Just wanted to give a quick update about the lab results we received yesterday. The results showed that in two days time Maddy's Blast count went down by 3 percent!!! We were very excited to hear that Ethan's cells are making some progress! We haven't had to use any Chemo...that is very good!!!!
Please pray that we will receive even better news on Tuesday when we do another draw. Also pray that the FISH results come back as we hope as well. Maddy also has a yucky cold :(. Please pray that it will disapear soon!
Thank you for your prayers!
Love, Richelle
Hello Maddy Fans,
Yesterday Maddy received another DLI but this time she got 40 mls...that’s a lot! Ethan had to sit for a long time to give all that precious blood.
We also received the results from the FISH test and they weren't what we had hoped for. Dr. K told us not to worry because Maddy had only received two of the lower dose DLI's when we drew the FISH. She had the nurses draw another one this week so we will be praying like crazy for better results.
So, you want to hear something crummy?! While Dr. K was drawing the Blood from Ethan she informed us that someone had come into the clinic with THE FLU while we were there. I could not believe it! Dr. K said that Maddy had to get IVIG and she would have to be on a preventative medicine for 30 days. Not only does the medicine taste gross but she has to take 6 mls of it daily...that a lot for the little Queen! To tell you the truth we were upset that something that could kill all these little kids was brought into the clinic when it probably could have been avoided! Now all the children have to be on this med for 30 days in hopes that they don't get sick. Please pray that Maddy and the rest of the kids don't get the flu!
So now it’s the waiting game. We wait and see what Ethan’s cells do in the next couple of weeks and Dr. K will make her decisions on treatment then. We hope that his cells will totally take over and kill off all foreign cells without causing GVH. We pray that this will give our baby girl the miracle she needs!
Thank you for all your prayers! They are so powerful!
Love and Blessings in Christ, Richelle, Joe, Ethan, and Moo
Tuesday, February 8, 2005 11:57 PM CST
Monday,2-14-15
Tomorrow Maddy gets her last scheduled DLI...please pray that goes well. She is still having some problems with her gums bleeding...please pray for that as well. I will update tomorrow after she gets her DLI.
We will also get the results from the FISH test they did last week. We are just praying that it will come back good. Thanks, Richelle
Hello Friends,
Maddy's bleeding stopped last night...thank God! We finally went to bed at about 2 am and prayed that she wouldn't start bleeding while we were sleeping. I said a prayer and just trusted that God would heal her gums while she was sleeping and He did. Thank you Jesus!
Today she recieved another DLI and did really well...they even gave her 4x the first dose!She also only needed half the amount of Benedrylthis time so it didn't affect her as much. She didn't take a nap until this evening...that's probably why she is awake right now(1 am). After I'm done writing this I'm going to try to convince her to go to bed with me...I don't think I'll have much luck...LOL!
So, all is well for now and we are enjoying every minute we have with our children. Please pray that Maddy will continue to do well and that Ethan's cells will continue to kick Leukemia butt without hurting the Queen.
Thank you all for your continued prayer's and support! Keep praying for all the children who continue to fight these horrible diseases.
Lots of Love, Richelle, Joe, Ethan, and The Queen
Tuesday, February 8, 2005 11:14 PM CST
So today Ethan gave his Superhero cells again and Maddy gladly accepted them....as if she had any choice. Ethan was very good as usual as we didn't here a peep out of him the whole time Dr. K drew the blood. We are so proud of his courage!
Ethan has been very brave for his sister but has been really testing mommy and daddy...be praying for that issue. I'm sure he'll get over it but I hope it's before we go crazy. I guess it's not easy for any of us to be couped up in this apartment all the time. :)
Ethan continues to enjoy working with Mary Margaret and she truly enjoys working with him. What a blessing! On the 22nd of this month Ethan will start working with a tutor. A lady from a church in Raleigh volunteered to work with Ethan free of charge...another blessing! I am excited about his tutor! I have really been feeling bad about the sacrifice’s he’s had to make for the past couple of years. He really wants to be in school but Joe and I just don’t feel that it is a good idea with Maddy having no Immune system. I hope this will give him at least some of what he’s looking for. I think he will have so much more confidence in himself after working with a tutor. Please pray that he will do well with his tutor so that he will be prepared for school next year.
Ok, for all of you who made a guess on Ethan’s picture, I have the answer. First I want to say that there was one guess that was close. Rebecca guessed that it was Tarzan and that was really close...but it was George of the jungle. Ethan loved hearing what you had to say, so thanks to everyone who took a guess. I added another picture to the album...take a look...he really enjoyed doing this project.
Thank you all for you love and support! We can’t even express how much we appreciate it!
Many Blessings, Richelle, Joe, Maddy, and our Superhero
Monday, February 7, 2005 11:41 PM CST
Quick update:
Maddy started bleeding from her gums today so we took her in to get some Platelets. We thought that would do the trick but as soon as we returned home from clinic we noticed that she was still bleeding. I called Dr. K and she told me to give her a med to help stop it but it didn't work so we took her to the BOPP.
When we arrived at the BOPP our nurse Lori drew some blood to see how high her Platelet count was and it came back 19,000...that's low...especially considering the boost she should have gotten earlier today. Lori gave Maddy some more Platelets and we waited for a while to see if that would worked...it didn't! Then we decided to give her some more of the med we gave earlier...that didn't work either! We then rubbed some of the same med on her gums to see if that would work...NO!!! Then Lori took another sample of blood and it came back 91,000...and that's good but it's not helping.
So, we don't know what is going on with the Queen but we're hoping that she will stop bleeding soon. Please pray that her bleeding will stop! Also pray that there isn't anything serious causing it. Thank you all so much for your prayers!
I'll update tomarrow after we figure out what's going on with our little pumpkin.
Love, Richelle
Tuesday, February 1, 2005 6:49 PM CST
NEW PICTURES!!! 2/7/05
Take a look at Maddy's picture in the album...she had a little help.
As you all know Maddy received her second DLI today. The day started off good as Joe and I got up early and got ourselves ready before braving the morning battle with kids. I actually enjoyed a nice cup of coffee and did some laundry without a certain little girl hanging on my leg….it was nice!
After getting the kids ready we headed off to clinic in hopes that everything would run smoothly so that we could be home at a decent time…that didn’t happen. When we arrived everything was going great. Maddy was happy to be there and Dr. K was heading our way to do the DLI….it was perfect! Want to hear even better news? Sue came in shortly after we got to our room in Rainbow Day (clinic) and told us that Maddy’s counts are coming up but her Blasts are decreasing. We were so thrilled! We didn’t expect to hear any news about Ethan’s cells for a couple of weeks. We couldn’t ask for a better way to start the day. Now Maddy just needed to get the DLI without having any reactions.
When Maddy gets any kind of transfusion she has to have pre-meds (Benadryl and Tylenol). Usually she gets 3 milligrams of Benadryl which makes her a little sleepy but she only takes a short nap if any. Today Maddy got 12 milligrams of Benidryl because Dr. K doubled the cell dose she was getting. Man I tell ya! Right after the nurse gave her the dose she started sliding down in her chair and pointing at the bed. She was out in 30 seconds! When Sue came in I told her that the Beny really hit her today, that’s when she said it was probably the 12 milligrams of Beny. No wonder…LOL!
Not long after Maddy fell asleep Dr. K walked in to give the DLI. She drew Ethan’s blood like last week and put it in her toobies. Everything went great and Maddy had no reactions. Wait, that’s a lie. She slept all day because of the 12 milligrams of Beny…5 hours! 2 hours after she got the DLI Dr. K came back to check Maddy out but she was still sleeping. Dr. K said “Next time only give her half the Beny, that’s all she needs”. We then decided that she would come back after seeing a couple other patients so we didn’t wake THE BEAST. We have all learned that Maddy does not like to be immaturely woken from her slumber….LOL! What I didn’t choose to remember is that Dr. K doesn’t only have a couple of patients…she never has….I don’t know what I was thinking.
By the time Dr. K could get back to us it was 6 Pm , we were all starving and Maddy was ready to get out of that room. She checked Maddy’s tummy and looked at her skin to make sure she didn’t have any rash then sent us on our way.
We are so happy that everything is going the way we want! Please pray that Maddy will continue to do fantastic and that she will not have any serious GVH. Also pray that Ethan cells will continue to KICK LEUKEMIA BUTT! Thank you for all of your prayer’s and support. It means so much!
Very hopeful in North Carolina, Richelle, Joe, Super Ethan, and Miss Moo
Tuesday, February 1, 2005 8:52 AM CST
Maddy get's another DLI today. Please pray that this one will do as well as the other.
I will update tonight when we get back from clinic to tell you how everything went.
Thank you for all of your prayers!
Love, Richelle
Wednesday, January 26, 2005 10:25 AM CST
Hello,
Yesterday Maddy once again received those precious cells from her brother. Maddy is doing very well so far but we expected that….she is very cranky and tired though so please pray that she will start feeling tip top soon. We won’t see any of Ethan’s cells do much for about 10 days. Please pray that in that time the Leukemia doesn’t run wild.
Dr. K had talked about giving Maddy a small amount of chemo to hold the Leukemia back but she doesn’t want to hurt Ethan’s cells in the process. She also feels that Maddy’s Leukemia is somewhat under control already as it has not grown much. She still has about the same in her Bone Marrow as she did when we came out here…that’s a good thing.
We are so happy that we are here with Dr. K! She is so brilliant and loves all these children so much! We know that God works miracle’s through her program. We are praying that our miracle will be received here as many others have.
Thank you all for all of your prayer’s! I will update as soon as Ethan’s cells start kicking Leukemia butt!
Blessings and love in Christ, Richelle, Joe, Ethan, and the Queen
Sunday, January 23, 2005 5:46 PM CST
Monday, January 24, 2005 Quick update,
Ethan had his blood drawn today and he screamed bloody murder as we had expected. The whole clinic could here him screaming, "NOOOOOOOO, not the needle, not the vibrating needle". Now, I don't know where he got the vibrating needle from because he has never had a vibrating needle of any kind come near him...I don't even think there is such a thing! Even though he deafened the whole clinic we are very proud of him...he is such a brave big brother! Please pray that he won't be as scared tomorrow and that the DLI goes well. Also pray for Ellen Ruiz as her husband Jon went home to Jesus on Friday.
Thank you all for your prayers!
Love, Richelle
Well,
Maddy was released from the hospital on Saturday but I've been too tired to write an update. All the tests for infection came out negative so that’s good but we still don’t know for sure what is causing the fevers. I have a feeling it’s the leukemia but that’s just a guess...Yes I said Leukemia. Thursday night Sue (Maddy’s nurse practitioner) came in to tell us the results from the FISH and it confirmed that the Leukemia is returning. The Mylotarg just isn’t doing what we want it to but despite the results Dr. K is still going to do the DLI in hopes that Ethan’s cells will cause some serious GVL (Graft versus Leukemia...we are hoping that’s the case as well.
Tomorrow morning Ethan will have his blood drawn to count the T-cells (fighter cells) and then Tuesday at around 9:00 am Eastern Time Maddy will receive them. Please pray that Ethan’s cells will only cause GVL (GOOD STUFF!!!) and not cause serious GVH (BAD STUFF!!!). Also pray that this will be Maddy’s miracle here on earth. We are continuing to believe that God can give us our miracle...and every moment of the day we are praying that He will.
Thank you all so much for your unending prayers and support. I want to say a special thanks to Jon and Ellen Ruiz. Ellen sent us a wonderful letter that was very uplifting for Joe and I. Jon was diagnosed with an extra-gonadal germ cell tumor (A very rare form of cancer) in January, 2004 and there is no cure. He is in a clinical trial right now but they can’t be sure if it will work as there are only 6 people in the trial with only 2 showing a response. Jon had scans done last week to see if he was able to continue the trial. Please pray for Jon and Ellen as they are going through this horrific time. My husband has been my rock...I don’t know what I would do without him and I’m sure she feels the sameabout her husband. Pray that God will give them a miracle!
I will be sure to update as soon as anything new arises. Until then, that’s all she wrote.
Praying for a miracle here in NC, Richelle, Joe, The Brave Donor, and The Queen
Thursday, January 20, 2005 11:31 AM CST
Quick update
Maddy was admitted to the hospital last night due to a high fever. After some fluids and antibiotics the fever subsided. The doctors have decided to keep her in until tomorrow afternoon just to keep an eye on her, so we won’t have a long stay.
The DLI is still scheduled for Tuesday and hopefully all goes well with that. For now we are seeing blasts show up in Maddy’s blood so please pray that the blasts will stay under control so that the DLI will have time to work.
Thank you so much for all of your payers!
Living on Faith here in North Carolina, Richelle, Joe, Ethan, and the Queen
Tuesday, January 18, 2005 1:30 PM CST
New pictures
Hello Friends,
Today Maddy had her Bone Marrow Biopsy done and it didn't show exactly what we wanted. We have gotten the final results back yet as they usually take about a week to process, but Dr. K had a chance to look at the Bone Marrow herself. She said that Maddy is still only having a partial response to the Mylotarg but she is still going to proceed with the DLI (Donor Lymphocyte Infusion).
Monday the 24th the lab will draw a small amount of blood from Ethan and count the T-cells (fighter cells) to see how much blood they will take from him to give to Maddy. The reason they count the T-cells is so they can try to determine how much blood to give her without causing severe GVH (Graft Versus Host). This technique isn't perfected though so Maddy still has a chance of getting GVH and that’s why Dr. K will keep us here to watch Maddy until she is comfortable sending us home. On Tuesday the lab will once again draw blood from Ethan but this time they will bring it into Maddy’s room at the clinic and give it to her. Maddy will be pre-medicated with Benedryl, Hydrocortisone and Tylenol to prevent any reactions to the infusion and the blood will be put on a slow drip so that her body doesn’t get overloaded with cells it doesn’t recognize.
Today we also got the chance to talk to Dr. K about what will happen if the DLI doesn't work the way would like and she told us that Maddy would be prepped for a second Transplant. This time Maddy would receive full body irradiation and a cord blood donor because of the graft failure she had with Ethan’s Marrow. We are hoping and praying with all our hearts that God will heal Maddy through the DLI so that we don’t have to put her through the horrible Transplant process for a second time.
Please pray that the results from the FISH test show that there are more of Ethan’s cells in Maddy’s Marrow and that the DLI will work to heal her body and not cause GVH. Also pray that the DLI will give Maddy the cure that we’ve been praying for since this whole journey began. Thank you so much for all of your prayers and support. We still have hope! God is Sovereign and Faithful….He will see us through.
Let us hold fast to the confession of our hope without wavering, for He who promised is faithful. Hebrews 10:23
Blessings and Love to you in Christ, Richelle, Joe, Ethan, and The feisty Queen
Thursday, January 13, 2005 9:27 AM CST
New pictures
Hello Maddy Fans,
Where do I start? Well, Tuesday was our long day at clinic so we had a chance to talk to Dr. K about any concerns or questions we have about the treatment Maddy's receiving. In turn Dr. K had the chance to tell us how she thinks the treatment is going. Everyday we draw blood that tells us how Maddy’s counts are doing and if there are any blasts. Monday and Tuesday it was showing blasts so Dr. K felt it was best to give Maddy another dose of Mylotarg. She explained that Maddy was only having a partial response to the Mylotarg and hopes that with another dose she will have a full response.
Wednesday we went back to clinic so Maddy could receive her second high dose of Mylotarg and get a Platelet transfusion that we knew she was going to need. She did fine with the Mylotarg infusion but after she got the Platelets she had high blood pressure so we had to give her a med to control it…and it did so we went home.
We returned home at about 4:30 PM and Maddy was in a bad mood! Nothing made her happy and she was hungry but everything I made her (her choices) wasn’t going to work for her. At about 7Pm I went to pick something up for Ethan, Joe and I while Joe stayed home with the kids and waited for Patty and Nate to stop by (Patty and Nate moved to Oregon today and we are really going to miss them!). When I returned from picking up dinner Maddy was running a low temp so we were checking often to make sure it didn’t go up.
Patty and Nate showed up at about 8:30 or so and by that time Maddy had a fever of 101.5 so our visit with them was cut short and we headed to the BOP (a little tiny room on 5200)….Maddy either likes going to the BOP or she just likes to torture us because she is way to happy when we walk through the doors of 5200. Ethan on the other hand hates being at the BOP….he can’t stand being cooped up in a tiny space. Maddy needed to get some antibiotics and some Tylenol and as soon as her temp went down we were free to go.
While we waited Joe and Ethan went for a walk around the hospital and I watched TV while Maddy slept…she was out after she got a dose of Benydril. As I sat next to Maddy I started to rub her tummy and noticed that it was a little hard on one side. I thought her liver might be big so I called for the doctor on the unit and she came to take a look at it. She agreed it felt a little big so she took some blood and weighed her to see if she had gained any weight. She hadn’t gained any weight so we are waiting for the doctors to call us today for the results from the test. Hopefully Maddy just needs some meds to help her liver pump all the yuckies out.
We will be returning to clinic today to gets some platelets I’m sure so hopefully we will get some answers about the liver. Please pray that her liver will get better and that Jesus will heal Maddy so she can live a long life with us hear on earth. Thank you so much for all of your prayers and support.
Oh, and I would like to say thank you to a certain someone who stopped by to see us in clinic. You are too generous! Thank you so much!
Love and Blessings in Christ, Richelle, Joe, Ethan and The Queen
Thursday, January 6, 2005 8:28 PM CST
New pictures
Hello friends,
We got home this evening after a long day at clinic and found that our internet had been installed so I can finally give a decent update. I guess I should start from Christmas since I haven’t updated in a while.
So last time I updated I told you that we had received the yes we needed from Kaiser to return to Duke….that caught us off guard….we’re not used to Kaiser saying yes. We were so happy that the Mylotarg was working and that we would be returning to Duke to get Maddy the best treatment possible….everything was looking great!
The next day Dr. Horvath called us with the results from Maddy’s FISH test and it didn’t look good. City of Hope was the hospital who ran the test and they said that the Mylotarg wasn’t working and Maddy’s Leukemia was getting worse…we were beside ourselves. We decided that the best thing would be to get Maddy back to Duke as soon as possible so that Dr. K could figure out a plan to get Maddy back into remission. We made flight reservations for December 26th and had two days to pack and say good bye to everyone.
Christmas was good. Ethan and Maddy got everything they wanted and weren’t very happy when we told them they had to keep the toys in the boxes so that we could pack them in the truck to be sent with Nana and Papa to NC. We stayed up late that night so we could spend some time with our family. By the time we finally went to bed we were so tired that we all sacked out in seconds and it didn’t seem like very long before we had to get up and drag ourselves to the airport. As I walked away from our home and got into the car I had so many different feelings running through me. I knew that would be the last time that I would walk out that front door, but like a friend said to me “A house is just lumber and nails. A home is anywhere your family is gathered.”…that is so true. Thank you Janet!
We arrived in North Carolina at about 4:30 pm and I realized that I hadn’t made a reservation for a rental car so I started calling around while Joe and Nate gathered all of the luggage. Nate met us at the airport to help us with all of our stuff. After calling several car rental companies I finally found a Triangle rent a car and they had a few cars to choose from. I told the girl on the phone that I would be right over and that I would be paying with a Visa bank card. Nate took our luggage to our hotel and we headed over to the rental place to get our car…it was so cold outside and Ethan complained all the way there. When we walked into the rental place I handed the girl my card and she handed right back saying that she couldn’t help me because with a bank card they had to verify insurance…because it was the weekend they couldn’t. I was livid!!!! Why didn’t she tell me that over the phone? It was 26 degrees outside and they wanted to just send us on our way. I could have rung her neck!!! After I said a few choice words she finally offered to call us a cab and I kept praying that the cab would get there before I hurt someone….and thankfully it did.
The next morning we went to clinic and had some blood drawn then met Dr. K at her office to talk about our plans. Before we talked about what we were going to do Dr. K wanted to look at the slides of Maddy’s Bone Marrow that Dr. Horvath sent with us. When she walked back in the room she told us that Maddy’s Bone Marrow looked good and the Mylotarg was working. She explained that what City of Hope was seeing was Ethan’s cells not Leukemia. I can’t even tell you how relieved Joe and I were to hear that. Dr. K said that she wanted to double the dose of Mylotarg and give it to Maddy the next morning. We went back to the hotel that night a slept better than we had in weeks.
Tuesday morning Maddy received her Mylotarg as planned and she did really well. By the next day she was neutropenic and the blasts (Leukemia) in her blood had already decreased…..by Friday she had no blasts at all. She has needed platelets everyday and blood about once a week but she is as active as ever, which brings me to last night. Yesterday afternoon I left with Patty to get out of the apartment for a while and on our way home Joe called me in a panic. Maddy had fallen off the couch and her nose started bleeding and wouldn’t stop. I called the clinic and we rushed over there to get a platelet transfusion to stop the bleeding….as soon as the platelets went through the bleeding stopped. The doctor that was on call last night gave her some vitamin K to help her clotting factors and sent us home.
This afternoon Maddy and I returned to clinic to get some more platelets and some blood while Joe and Ethan went to the mall to get Ethan some much needed new shoes and a hair cut. When they met us back at the hospital Ethan was a new man! He’s so cute! While they were out Joe found a mini fold out couch for Maddy so that we wouldn’t have any more accidents and a Barbie just because he loves his little princess.
So far everything is going well! We hope to have our house sold as soon as possible so that we can take that off our list of worries. Please pray that it sells quickly. Thank you all for your love and support! Your prayers and kind words mean so much. Please continue to pray for Maddy’s complete healing here on earth. Also pray for all the other children fighting these horrible diseases. We love you!
Living on Faith here in North Carolina, Richelle Joe, Ethan, and our little fighter
Thursday, January 6, 2005 3:49 PM CST
Quick update,
Maddy is doing really well despite her extreemly low counts. Everything looks good and we are starting to get used to Durham again. I will give a full update as soon as our internet is up. We love and miss all of you!
Richelle, Joe, Ethan, and our fighter
Thursday, December 23, 2004 0:15 AM CST
Maddy fans,
Today Maddy had her Bone Marrow biopsy and it looks good! The Leukemia isn’t growing and there was a drop in blasts in the marrow so we will be proceeding with the second dose of Mylotarg. There have been some changes in when and where she is going to receive it though.
Today while Dr. Horvath was telling us the results from the Bone Marrow biopsy the lady from IMR called and told us that Kaiser has changed their minds and are paying for us to return to Duke. Can you believe it!!!! I can’t, but I’ll take it! Dr. Horvath then called and asked Dr. K what she wanted us to do and she said she wants us in North Carolina on Sund....this Sunday!!!!
So we are packing up our things and getting ready to head to NC. We will still have a semi- Christmas dinner and we will definitely be opening gifts from Santa on Christmas morning. Every other second of the next couple of days will be taken up by packing, packing and more packing as we prepare to head to NC to get our little girl the treatment she needs.
We don’t know how long we will have to be in NC so we have decided to sell our house. Carol and Greg will be driving our truck out to NC so that we will have a vehicle and all the stuff we will need for the next few months. They will also be taking care of our house and putting it on the market for us so we have fewer worries. Thank you Mom and Dad!
Joe just called while I was writing to tell me that Maddy is running a fever. Please pray that the fever goes away and that we will make it to Duke before Monday. Also pray that this treatment with be the miracle we’ve been praying for. Thank you so much for your prayers! God is so good!!!!
Merry Christmas, Richelle, Joe, Ethan, and The Queen
Wednesday, December 22, 2004 9:46 AM CST
Hello friends.....
I'm sorry I haven't posted for awhile, but things have been pretty confusing lately. As of right now, Maddy is doing okay. We believe she had a sinus infection and treated her with antibiotics. Now that the antibiotics have worked, she's not a crankie girl....can't wait for her teenage years!
She had a little fever yesterday, but now that it is under control, she has a bone marrow aspiration scheduled this morning. Please pray that the results of the bone marrow test come out in Maddy's favor so we can continue with the Mylotarg. Also pray that the IMR Board will allow us to return to Duke for further treatment.
I'll update as soon as I get new information. Thank you all for your love and support. WE LOVE YOU!
Love and Blessings in Christ,
Joe, Richelle, Ethan and "Queen Maddy"
Wednesday, December 15, 2004 12:58 AM CST
Hello Friends,
I wanted to post a quick update telling you briefly what's going on. First of all Kaiser is stringing us along as usual and we don't have the time for their antics. They are really good at making things look promising while dragging their feet and wasting time that we don't have. Unlike Kaiser, we truly believe that Maddy will receive the best care with Dr. K. She is entitled to finish treatment with the doctor who started the treatment, and she is entitled to receive treatment where the doctors know what their doing. City of Hope and Children’s LA don’t use DLI…Dr. K uses it in her protocol for relapsed AML.
We are hoping that IMR (The State) agrees with us but know that Kaiser has their ways of making their decision sound pretty. I truly believe that Dr. Faulk makes his decisions to serve his agenda and nothing more. How can I trust my child in his hands or the hands of the doctors who respect and support him.... it makes you wonder what kind of scheme they have going. Maybe I'm just angry but it seems to me that if nothing is done to change Kaisers ways then children are going to continue to die and parents are going to continue to lose their children to these horrific diseases.
Please, please, please pray for IMR to overturn Kaiser’s decision! Maddy deserves a chance.
Oh, the Mylotarg is working and Maddy’s Leukemia is going away… so how crazy can we be?
“And call on me in the day of trouble; I will deliver you, and you will honor me.”
Psalms 50:15
Many Blessings to you in Christ, Richelle, Joe, Ethan and Maddy
Friday, December 10, 2004 2:03 PM CST
Hello friends,
As you all know we found out on Tuesday that our sweet little girl has relapsed. I have to say that we were in complete shock, as we believed that Transplant would be our daughter’s miracle. We haven’t given up hope though as we have complete faith in our Lord and trust that He will get us through this.
We have talked to Dr. Kurtzburg and we have decided to use a drug called Mylotarg to get her back into remission. Maddy received her first dose of Mylotarg yesterday and will receive a second dose on Christmas Eve. If all goes well with the Mylotarg we will then fly out to Duke and Maddy will receive Donor Lymphocyte infusion (DLI). DLI is where we take Ethan’s Lymphocytes and give them to Maddy in hopes that they will cause Graft Versus Leukemia (GVL) and put Maddy back into a full remission.
We are currently fighting the system again as Kaiser has verbally denied us going back to Duke for treatment. Please pray that we can take our daughter back to Duke, and for the Mylotarg and DLI to give our child the miracle we have been praying for since she was diagnosed. Please also pray for Joe and I as we try to stay positive thorough out this fight.
Thank you all for your love and prayers! We can’t tell you how much it means to us!
Let us hold fast to the confession of our hope without wavering, for He who promised is faithful. Hebrews 10:23
When I saw Him, I fell to His feet as dead. But He laid His right hand on me, “Do not be afraid; I am the First and the Last. I am He who lives, and was dead, and behold, I am alive forever more. Amen. And I have the keys of Hades and of Death.” Revelation 1:17-18
Love and Blessings in Christ, Richelle, Joe, Ethan and Our little Fighter
Tuesday, December 7, 2004 4:08 PM CST
Hello friends,
Please pray for our little girl. The Leukemia has returned and we could use all the prayers we can get!
Thank you, Richelle
Wednesday, December 1, 2004 10:06 AM CST
Hi All,
Yesterday Maddy had her last round of IV Meds and boy was she not happy. She definitely let us know that she doesn't ever want to see that hospital again.... who could blame her.
Last night we received a call from Dr. Horvath with the results from Maddy's blood draws. We expected that she would call and tell us that everything looked beautiful and that she would see us in a few weeks as she always does but that wasn't the case. Everything looked normal as usual except for her platelets, they have dropped significantly and Dr. Horvath is concerned. She contacted Dr. K in NC and they discussed what it could be but there really aren’t any clear answers right now. We will have labs done on Tuesday to see if there are any changes but for now we just wait.
Dr. Horvath also had a FISH test ordered so we will wait for those results to come in. Hopefully the FISH will show that Maddy is still fully engrafted so that we can rule out the worse case scenario. Please pray that the FISH test shows that Maddy is still fully engrafted and that the blood draws on Tuesday show that everything is normal. Also pray for Joe and I, as we are really nervous.
I will update as soon as we get the results from either test. Thank you all for your prayers and support!
Lots of love, Richelle, Joe, Ethan and Maddy
Tuesday, November 16, 2004 10:22 AM CST
Hello All,
There is nothing too exciting going on in the Bates house but I wanted to do a quick update to tell you how Maddy's tests went.
Last update I told you that Maddy would be having a series of tests done for her nine month check up. Well, we got most of the tests done but of course with Kaiser nothing goes perfect so some of the tests have to wait until we return to Duke next year as Kaiser does not offer them. We did have Maddy's heart test and blood tests done and all of those came out great. Maddy is now off all of her meds and only goes for checkups once a month just to make sure her new cells are doing what their suppose to.....GROW AND MATURE!
So, all is great here in the Bates home as our little Queen is recovering just the way we've been praying for. GOD IS SOOOOOO GOOD!!! We are truly blessed!Thank you all for your prayer's.....They're working!
Many Blessings to you in Christ, Richelle, Joe, Ethan and The Queen
Sunday, November 7, 2004 10:29 AM CST
Hello Maddy Fans, I posted new pictures.
Once again it has been a while since I’ve updated. Everything has been so normal around here so there’s not much to write about. We finally received the results from Maddy’s FISH test (tells us how Ethan’s cells are progressing) and it was good. Maddy has about 98than cells and 2-3irl cells. Dr. Kurtzberg had told us in the beginning that Maddy could have some little girl cells swimming around with the new cells and that it was normal. She is still fully engrafted and doing beautifully.
We have decided not to go back to Duke for Maddy’s 9 month tests as it is flu season and we don’t want to risk Maddy getting sick while traveling. Dr. K and Dr. Horvath have worked it out so that we can have all the tests done here. The tests include a pulmonary function test (the lungs), an Echocardiogram (the heart), an eye exam, Immune function test (tells us if she has an Immune system), and many other blood tests that tell us how her new cells are developing. Please pray that we get these results back quickly and that they all come back perfect.
Last night we took the kids to Castle Park (an amusement park) for an event that was put on by a children’s cancer group. Maddy played miniature golf for the first time ever…. it was so cute! She was swinging like a pro! She loved being outside, playing like a normal child and we loved seeing her run around as if nothing has ever happened. She is such a strong little girl. She and Ethan are the strongest people I have ever known! I am so blessed that they are my children! Ethan had a great time last night as well. He couldn’t quite get the hang of how to hold the putter correctly but he had fun any way…that’s how children are. Joe and I have decided to home school Ethan for his Kindergarten year due to Maddy’s low immune system. Please pray that everything goes well so that he will be prepared for his first grade year.
We are so blessed! Every morning when I wake up I look at my children and I thank God for them. I thank God that I have them to kiss and hug and cuddle with…. and I thank God for getting us through this past year and a half. Please pray for the families who have lost their children…and for all the children and their families who are fighting these horrible childhood diseases. Thank you for all of your love and support!
God Bless, Richelle, Joe, Ethan and Miss Maddy
Wednesday, October 13, 2004 3:02 PM CDT
Qiuck update,
We still haven't received the result's from the tests we did two weeks ago. As soon as we get the result's I will be sure to post them. Thanks for your love and support! Love, Richelle
Hello Maddy fans,
All is well in the Bates House! Maddy had her monthly visit to the hospital yesterday and everything looks great! She received her IVIG and Pentamidine and had all her blood work done. Dr. Horvath ordered a molecular study so that we can see how Ethan cells are progressing. Please pray that Maddy has 0 Ethan cells! We will get the results from that test in about a week but for now all her other counts look fantastic!
HGB 11.0- NORMAL WBC 6.7-NORMAL PLT 194-NORMAL MAG 1.8-NORMAL BILI 0.1-NORMAL
As you know last weekend was the Light The Night Walk for LLS. We had a lot of fun and hopefully raised a lot of money for the cause. I want to thank all of you who did donate, as it will get us closer to finding a cure for a disease that is devouring children every day. Also I want to thank you for all of the prayers that have been lifted up to the heavens on our behalf and behalf of all the children who are fighting this battle or have lost their battle to a childhood disease. Please continue to pray for all the families who have lost their children especially during the holiday seasons.
I want to take a moment to thank all of the wonderful people who have supported us during this last year and a half. First I want to Thank Maddy’s Nana Carol and Papa Greg. You both have been so amazing to us! I can’t even begin to express my gratitude for all the support you have given us! Thank you for the funds that helped us keep our house so that we could bring our children back to the only thing in our life that hadn’t changed…our home! Thank you for taking time off to come stay with us in NC. It truly was a blessing to have you there! For much more, we thank you! We love you! Rachel and Mike, Thank you for keeping our house in order while we were gone and for the surprise visit to NC when we needed family more than ever! We love you! Mike and Marian, Thank you for the late night chats that got me through the long nights on 5200 and thank you for the information that would ultimately save our daughters life! We love you! Dr. Horvath, Thank you for giving us HOPE! What a magnificent gift! We love you! Thank you to all the people who brought us meals in the hospital or stayed with Maddy for a couple of hours so that I could go home and see my husband and my sweet little boy. Thank you for all the thoughts and all the prayers! Thank you for all the emails and guest book entries. Thank you for the blood and platelet donations and for the donations to the Miracle for Maddy Fund. The list goes on and on! Thank you for everything! We wouldn’t have made it this far without all of your support! We love you all!
When Maddy’s journey began I decided to start a scrapbook for her. Something that would remind her of how strong and brave she is. Now that we have gotten this far I want her to remember so much more! I want her to always remember the people who love her and have supported her through every step of this. I want her to remember all of the doctors and nurses and I want her to remember all of the families that we have met and came to love during this journey. I would really love to have pictures to put with all the journal entries and such. If you would please send a picture of yourself, or if you feel comfortable I would prefer you send a picture of your family. Please address them to Queen Maddy’s Scrapbook and make sure to include an address where I can send you a thank you note. Thanks!
Our address is: 3363 North Arrowhead Ave San Bernardino, CA 92405
Blessings and love to you in Christ, Richelle, Joe, Ethan, and Our little miracle
Monday, September 27, 2004 3:02 PM CDT
mini update,
I wanted to remind all of you that The Light The Night Walk is this Sunday Oct.10th at Pharaoh's Lost Kingdom. For any of those who would like to join us please do! For those who can't join us please consider donating to LLS in honor of all the children who have and will fight this battle.
Every day I look at my baby and thank The Lord that she is alive! When I wake up in the morning I go straigt to her to make sure its not a dream. I am blessed because every morning when I check on her she's still there...so many parents wake up and remember that their child is gone. That is why I want to urge you to donate. I don't want one more family to go through what we have been through...I don't want one more family to wake up in the morning and realize that they will never see their child on this earth again.
Please, $1, $5, anything you can give will bring us closer to the dream we have for all the families who have been and will be affected by this horrific disease! Thank you! God Bless!
Please drop by the joiners' site and leave some words of encouragement. Trevor Lee Joiner went to be with Jesus on Oct.4, 2004.
Hello all,
I know I don't update often but there really isn't much to say...that’s a good thing. Maddy has been doing very well! She is definitely the strongest person I know. I have met many strong children along this journey and I fell in love with them all! So I want to take a moment to tell you about some of them.
When we first arrived in North Carolina we met a beautiful little girl named Emma and her family during our first visit to clinic. When we went home that night I told Joe that she was one of the most beautiful little girls I had ever seen! Emma was diagnosed with Metachromatic Leukodystrophy (MLD) and had her transplant a week before Maddy. She is doing very well and is still one of the cutest little girls I have ever seen! www.caringbridge.org/ca/emma/index.htm
After we settled in on the unit at Duke we met a family with two beautiful boys. Trevor an 8-year old, and Ross a 2-year-old. Unfortunately, we didn't get to know little Ross as he passed away right after Maddy was transplanted. These children were also diagnosed with MLD. Trevor was a spitfire! He would smack me on the behind as I walked past him in the hall and say, "Hey hot Mama!" and after he had a bath he would amuse the nurses by showing them the moon (his behind). Trevor had two transplants and both failed. His parents Joe and Janet decided not to do a third knowing that he wouldn't survive it and they didn’t want to put him through the pain again. That was probably the hardest decision they had ever had to make. Now they are at home in Texas trying to give him the best life possible knowing that he won't be here for as long as they had hoped and dreamed. Trevor, we miss seeing your sweet smile! We love you! www.carinbridge.org/tx/joinerboys
Everyday while sitting in Maddy's room I could hear little feet shuffling through the hall. As I peeked out the door I saw Nic, a sweet little 2-year-old boy wearing a yellow gown with spider man jammies underneath. Nic was diagnosed with Adrenoleukodysrophy and needed a transplant to survive. His first transplant failed so they decided to try it again. Nic’s second transplant worked and he is doing very well. Thank God! www.caringbridge.org/vt/nicolasroy
Maddy and I met a 2-year-old little boy named Josh while taking our daily walk in the hallway! He was diagnosed with AML and relapsed like Maddy. Transplant was his last chance just like the rest of the children on the unit. The day we met him he was having a 2-year-old fit. His mom asked him to say hello to Maddy but all Maddy got was a grunt. All 2 year olds have those days! We found out Josh had gone to be with Jesus on the Day Maddy was released from 5200. It was a bittersweet day. www.caringbridge.org/nc/josh
The day before we were released from 5200, Jordan, the cutest, chunkiest baby we had ever seen, was readmitted to the unit due to complications from the transplant he had received several months prior. Jordan was the youngest child to undergo transplant for Hunters. Just a few weeks back he received a second transplant in the hopes that his parents Carrie and Patrick would see him grow up and live a wonderful life. Sadly, yesterday morning Jordan lost his fight and Carrie and Patrick lost their little boy. Carrie and Patrick, our hearts go out to you! You will be on our minds and in our prayers constantly! www.caringbridge.org/il/jordan
All of these children and many more have made a permanent mark in our lives but none as much as our precious Princess Madison. It was about a week after Maddy had been diagnosed that we were introduced to the family that would change the course of our lives…we just didn’t know it yet.
I remember the day we met The Mitchems like it was yesterday. I can even smell the latex gloves and the chemo that seeped out of our Maddy’s pores. They were just about to leave for North Carolina where their Madi would receive a transplant at Duke University but they didn’t want to go before telling us about the options we wouldn’t hear about from Kaiser. We sat and talked for as long as our girls would let us and Marian gave us as many facts as possible while trying not to scare us to death.
She told us so many things that we wouldn’t even understand until our Maddy relapsed but one thing stood out in our minds more than anything else she had to say- QUALITY OF LIFE. I couldn’t even grasp what that truly meant until the day that they lost their sweet baby. That was probably one of the hardest things that I had to deal with during this journey. Everyone thought she was going to make it, everyone prayed so hard that she would. Madi Mitchem was a vibrant, beautiful little girl with so much fight in her. She was happy and strong until her last day. Madi, we miss you so much! There isn’t a day that goes by that I don’t wish you were here. I dreamed of the bond you and our Maddy would have. I dreamed about the days when we would sit and watch the two of you play with your Barbie’s for hours. I so long to see that! We love you Madi!
I am thankful though that God brought our families together and blessed us with the bond that we have. I am also thankful for the strength that Mike, Marian, and Mikey have. They have pushed us every bit of the way. They have been the voice on the phone that got us through the night when we thought we couldn’t take it anymore! God has blessed us even through the losses. All of these children and their families have made our lives so much more precious. That’s why it is so hard to see them suffer from these diseases.
There are so many ways you can help these families fight these diseases but I want to ask you to help me with the one that has hit our family and taken little Madi Mitchem from hers, Leukemia. The Mitchems have put together a team that will walk in honor of Princess Madi at the Light The Night Walk in Redlands on October 10th. I want to encourage you to join the team as a walker and help raise funds for the Leukemia and Lymphoma Society to find a cure for this horrible disease. If you can’t join us, please consider sending a donation to LLS. The family has a “Princess Madi’s Light The Night Walk” web page you can visit for details on how to donate. Please visit the web site at http://www.active.com/donations/fundraise_public.cfm?key=princessmadison. Anyone who donates a $100 or more will receive an official light the night T-shirt and an illuminated balloon. The family raised $6000 dollars last year and would love to beat that this year.
There are so many more children that I didn't mention and children that I don't even know. Please take some time to say a prayer for all the children suffering from these diseases and the families who have lost children to them.
I want to also encourage you to stop by these families web sites and share some words of encouragement. Thank you so much for the love and support you have shown us this past year and a half. We thank God everyday for all of you!
There is a song from Celine Dion that I wanted to share with all of you. I want to dedicate it to all the parents who have endured having a sick child.
IF I COULD
If I could I’d protect you from the sadness in your eyes Give you courage in a world of compromise Yes, if I could
I would teach you all the things I’ve never learned And protect you from the bridges that I’ve burned Yes, I would if I could
I would try to shield your innocence from time But a part of life I gave you isn’t mine I’ve watched you grow so I could let you go If I could
I would help you make it through the hungry years But I know that I could never cry your tears But I would If I could
If I live in a time and a place where you don’t want to be You don’t have to walk along this road with me My yesterday won’t have to be your way
If I knew I would try to change the world I brought you to And there isn’t very much I wouldn’t do But I would If I could
I want to protect you If you need me I’ll be there I know I can’t change your world
But I would If I could
God Bless, Richelle, Joe, Ethan and The Queen
Monday, September 13, 2004 10:50 AM CDT
Hello Maddy Fans,
Maddy is doing fantastic! She is completly off of several of the meds she's been on since transplant! She is vivacious and full of energy...it's so wonderful. I keep pinching myself, hoping that I won't wake up! God is so good!!!
Friday Joe and I decided that we were going to do something spontaneous. The only spontaneous thing we've done in the past year or so is to jump in the car and run to the hospital because Maddy hurt herself somehow! So we packed some small bags, jumped in the car and started driving!
After only two hours we ended up in Santa Barbara...not too shabby! We found the beach as soon as we got off the freeway and decided to get out for a while before we had to find a hotel. Before we got out of the truck we specifically told Ethan not to get all wet and sandy...of course he didn't listen, and to tell you the truth I knew he wouldn't...I don't know why we waste our breath! By the time we were ready to leave Ethan was soaked so we needed to find a hotel and clean him up.
We didn't know where to go or which direction the hotels would be in so we decided to give our good friend Dora a call. When she's not in school in muggy North Carolina, she lives in beautiful, dry, slightly breezy Santa Barbara. After complaining a little because she couldn't be there with us she gave us directions to a nice hotel and dining for later in the evening. We cleaned Ethan up and got them both dressed in warmer clothes and headed off to the pier for some grub..we were all starving!
The kids were so excited about being on a pier, they thought it was cool that they could look down and see the water through the cracks! Ethan kept running into things because he wouldn't look straight ahead...he was too busy making sure he wouldn't fall through the cracks. Maddy was just elated! She wanted to see if Arial(The Little Mermaid), and Nemo would come up and say hello! She kept calling their names...it was so cute!
We ate at a seafood resturaunt, of course, and for dessert got ice cream and sat on the pier watching the boats and saying good night to all Maddy's fishy friends! It was a very nice evening but we were ready for bed so we headed back to the hotel and went to sleep.
Sunday morning came and we got up early, went to breakfast, said good bye to Santa Barbara and headed home. We had a very nice weekend! It was awesome to see the kids having so much fun after being couped up for so long! We look forward to many more spontaneous weekends with our healthy, happy kids!
I want to thank all of you for your prayers and support! We couldn't have gotten to this point without the wonderful people the Lord has blessed us with! I can't even tell you how truly blessed we are!
Thanks be to God for His indescribable gift! 2 Corinthians 9:15
God Bless, Richelle, Joe, Ethan and The Queen
Wednesday, August 25, 2004 8:36 PM CDT
Hello everyone,
Today was Maddy’s clinic day and everything is great! Her Hemoglobin is 10.9, platelets 90,000, and her ANC is 7,000…I almost can’t believe it! Her counts are starting to look normal! Dr. Horvath was so happy to see Maddy today…mostly because Maddy was thrilled to see Dr. H. Maddy ran down the hall yelling HORVATH!!!!! It was so cute! She has been doing the sweetest things lately!
Maddy has been a dancing fool for the past couple of weeks! I don’t know what’s come over her but she loves to dance! I will be sitting in the living room with the TV off, reading a book …ok a magazine, and Maddy will run in with her princess dress and crown on and say “DANCE”! That means I have to turn on some groovy music so she can shake her groove thang!
She also loves to sing…REALLY LOUD! When were in the car the kids like me to turn the music up so that they can sing along. Ethan sings the songs word for word, Maddy sings too but uses the words from Twinkle, Twinkle and O Mc Donald! I think it is so adorable…Ethan thinks it’s annoying! I LOVE MY KIDS!!!
Joe and I are doing great! We had some visitors from Good old North Carolina (our favorite nurse Patty and her husband Nate) come to visit last weekend…we had so much fun!!! Friday when they flew in we headed down to the beach for some fun in the sun…yes we used lots of sunscreen! Maddy sat under the umbrella most of the day and played in the sand. I have never seen a child so content with a bucket, a shovel and a cup of cheetos…she didn’t care what was going on around her as long as she was left alone!
Ethan had a great day as well…except for the wipeout he and Joe had when they first got there! Thank God I wasn’t there to witness it because I probably would have freaked out! Joe took Ethan out to play in the water and a really huge wave came too quickly for them to get out of the way! I’m sure you get the picture! Let’s just say that they both had lots of sand where it shouldn’t be! All in all we had a great day!
Saturday the adults spent the whole day at Disneyland. I can’t even tell you how much fun we had! Nate had never been to Disneyland so he was in awe the whole time! He couldn’t believe how much detail was put into every ride. At the end of the day our feet hurt so bad that we needed to head over to a restaurant that served something that would make us forget the pain…and it did! We enjoyed our food AND DRINK then headed over to the beach to dig our feet in the sand. It was the perfect ending to the perfect day!
Sunday Nate and Patty flew out and our weekend came to an end. We had an awesome time and were sad to see them go but I know we will see them again soon! Nate and Patty, we love you! God blessed us with your friendship…you are so awesome! We look forward to spending many more weekends with you in the future!
So, God is good! Thank you for all of your prayers! That means more to us than anything! We love all of you!
Extremely happy in California, Richelle, Joe, Ethan and Maddy
Sunday, August 8, 2004 8:29 PM CDT
Quick update 8/24/04
Maddy is doing very well! We had lots of fun last weekend as we had some good friends visit. We took the kids to the beach and they had a blast! Tomorrow Maddy has clinic so I will give a full update tomorrow night with pictures of the kids at the beach.
God Bless, Richelle
Hello,
Look at the new pictures!
Sorry I don't update more often, but it seems like there really isn't much to say...which means that everything is going great!
Maddy is doing terrific! Her counts are still steadly rising as they should and we are only going to clinic every other week! We have nothing to complain about! Praise God!!!
Maddy's hair is coming in thick and her vocabulary is awsome...especially when she's telling Ethan off! He has been such a good big brother and he's very protective, but Maddy hates when he tells her what to do...even if it's for her own good! Ethan get's so mad at her when she doesn't want to listen to him...it's sweet!
Joe and I are doing really well! We are definatly keeping busy spending time with friends and family and finishing up all the things that have been put aside since Maddy's been diagnosed. It's nice to be home!
God has been so good to us! He has blessed us with Great friends and family, helped us make it through this past year and healed our sweet baby! Thank you Jesus...For everything!!!
Living life to it's fullest, Richelle, Joe, Ethan and The Queen
Friday, July 30, 2004 1:24 AM CDT
Hello friends,
Make sure to look at the new pictures!
We have finally gotten a computer (Thank you Rick and Terri!). It has been so wonderful being home! I thought that the kids would need some time to adjust but I was wrong! They were running through the house like wild animals as soon as we walked throuh the front door (unfortunately for me they haven't stopped since!).
Joe is happy to be back to work. He was really getting tired of laying around and now he's ready to take a vacation as am I. We definately won't be spending it in Durham, North Carolina (no affence to the ones we love who are stuck there)! We love you Pat and Natey!
Maddy is doing really well as her counts are steadily rising with her attitude following close behind (You can't be a queen without an attitude)! She is becoming more and more independent everyday and her appitite is larger than mine (I know, it's hard to believe)!
Maddy is getting so big and her hair is getting longer everyday! She is so beautiful! Every night as I put her to sleep I stare at her sweet face and thank My God for healing her. This past year has definately been a long one but I wouldn't change it for anything! I would go through this a million times over as long as it means that I get to have my baby!
God has blessed Joe and I with two beautiful children and we are so thankful for that! We are also thankful for all of our family and friends that have supported us every step of the way! We want to thank all of you for your love, support and the words of encouragment that have gotten us through the hard days. We love all of you! God Bless!
Living On Grace, Richelle, Joe, Ethan and The Queen
Friday, July 30, 2004 1:24 AM CDT
Hello friends,
We have finally gotten a computer (Thank you Rick and Terri!). It has been so wonderful being home! I thought that the kids would need some time to adjust but I was wrong! They were running through the house like wild animals as soon as we walked throuh the front door (unfortunately for me they haven't stopped since!).
Joe is happy to be back to work. He was really getting tired of laying around and now he's ready to take a vacation as am I. We definately won't be spending it in Durham, North Carolina (no affence to the ones we love who are stuck there)! We love you Pat and Natey!
Maddy is doing really well as her counts are steadily rising with her attitude following close behind (You can't be a queen without an attitude)! She is becoming more and more independent everyday and her appitite is larger than mine (I know, it's hard to believe)!
Maddy is getting so big and her hair is getting longer everyday! She is so beautiful! Every night as I put her to sleep I stare at her sweet face and thank My God for healing her. This past year has definately been a long one but I wouldn't change it for anything! I would go through this a million times over as long as it means that I get to have my baby!
God has blessed Joe and I with two beautiful children and we are so thankful for that! We are also thankful for all of our family and friends that have supported us every step of the way! We want to thank all of you for your love, support and the words of encouragment that have gotten us through the hard days. We love all of you! God Bless!
Living On Grace, Richelle, Joe, Ethan and The Queen
Wednesday, July 7, 2004 6:38 PM CDT
Hello Maddy Fans!
This is Nana Carol with a short update to let you know that Maddy and family are once again in California. We arrived late Monday evening, June 28th courtesy of Duke Energy's private jet through Corporate Angels. Mike and Marion Mitchum picked us up at LAX and drove us home. THANK YOU!
Richelle and Joe have been busy adjusting to life at home, getting Maddy set up at outpatient clinic and Joe going back to work. All is well with the "queen" and her family.
Richelle will update with lots of details as soon as they get settled. Thanks for all your love, prayers and support while they were in North Carolina - it meant a great deal to them...more than you'll ever know. Continue to pray for Maddy's complete healing!
Tuesday, June 22, 2004 12:43 PM EDT
Day 118
Hi all,
We got our results back from Maddy’s FISH test (it tells us if she is still fully engrafted.) She still has 100 than cells!!!! We are so happy!!! We also found out that her Rh factor (her blood type) has finally changed to A from A-! One more step closer to her recovery! Thanks for all of your prayers!
We had our long day in clinic yesterday and it was actually long! Maddy got the last doses of the weekly meds she gets every Tuesday and they filled her up with platelets for her surgery that she had today. She had her single lumen (toobie) removed at 10:00 this morning and everything went great! She wasn’t allowed to eat until after surgery but it didn’t faze her…until after she woke up! She was screaming “nuggies…meak!” (Chicken nuggets and hamburger).
We are definitely ready to come home! We really miss our house! I know that sounds strange but I can’t wait to sleep in my own bed and watch my own TV! I can’t wait to cook in my own kitchen and let the kids play in there own rooms, but what I’m most excited about is bringing my little girl home with me! There have been so many nights that I wondered if I would! I know that we still have a long road ahead of us but PRAISE THE LORD FOR GETTING HERE!!!!! THANK YOU JESUS!!! YOU ARE SO FAITHFUL!!!
We will continue believing that the Lord brought us here for a reason and we will trust that God has a special plan for our family. I don’t know why this happened to our little girl but I know that God will continue to get us through every minute of it!
Oh, I almost forgot…WE’RE COMING HOME FRIDAY NIGHT!!!!! We arrive at John Wayne Airport at about 7:00 PM! I AM SO EXCITED!!!!
Thank you for all of your love and support! WE ARE BLESSED!
Serving an Awesome God, Richelle, Joe, Ethan and The Queen
Tuesday, June 15, 2004 6:06 PM EDT
Day 111
Hi y’all,
Today was our long day in clinic but it wasn’t long at all. We were only there for two hours. Dr. K wasn’t in clinic today as it is her turn to do rounds on 5200 (the bone marrow unit.) We did see Susan Staba (The Fellow) though and she lowered Maddy’s steroids. Maddy will most likely be off steroids completely before we go home…that means she will only have to take 5 meds in the morning and 4 at night. I’m sure the Queen will approve!
We still haven’t heard when our flight will be, but I’m sure everything will fall into place like it always does. We are hoping that it will be on Monday the 28th so that Greg and Carol (Joe’s parents) don’t have to fly in, then turn around and travel with us the next morning…that would be exhausting! It would be nice if they could come in on the weekend and have some time to rest before we head home to California!
Well, that’s all there is to say at this time but I will be sure to update as soon as we hear when our flight is.
Please continue to pray for Mike Maglio and his family as they have a long road ahead of them! Also continue to pray for all of the children on 5200 who are fighting for their lives! Thank you so much for being prayer warriors! God has blessed us with wonderful friends and family. Words can’t even express how much we love and appreciate all of you!
Very excited here in North Carolina, Richelle, Joe, Ethan, Maddy moo
Wednesday, June 9, 2004 11:33 AM EDT
Day 105
Hello from muggy North Carolina,
Only two and a half weeks to go and we are definitely ready to get back to the drier part of the world! Maddy is doing fantastic! She is so full of energy…Joe and I can hardly keep up with her. We are constantly making her something to eat and it seems that her appetite is increasing every day. Ethan is doing well also but his attitude can use a little tune up. As we get closer to going home he gets more ornery. Joe and I are definitely getting more anxious every day so we try not to get too angry with Ethan…we understand how he’s feeling!
We had are weekly meeting with Dr. K yesterday and there really wasn’t much to say. She decreased some of Maddy’s meds as she is trying to wean some of them completely before we go home. That will be nice for the Queen, as she hates being inconvenienced! While Maddy was sleeping, Dr. K tried to pull out her single lumen (toobie) but it wouldn’t budge. We were trying to avoid anesthesia, but it seems as though the cuff that holds the toobie in has grown into the skin like it’s supposed to. Maddy is scheduled to have her lumen removed on June 22. Please pray that nothing goes wrong and that Maddy will wake up happy and healthy with no nausea…she’s had enough of that to last a life time.
Thank you so much for your love and support! God has blessed us with wonderful friends and family!
Please pray for Mike Maglio (Joe’s sister’s husband) and his family as his father (Jerry) passed away on June 5, 2004. Mike, your father was a kind man and we are going to miss him very much! We love you and are here to support you in any way that we can! Also continue to pray for the Joiner family as they are adjusting to being at home without their little boy (Angel Ross) while trying to get Trevor well and support him at this time.
Trust in Him at all times, you people; Pour out your heart before Him; God is refuge for us.
Psalms 62:8
In Christian Love,
Richelle, Joe, Ethan, and The Queen
Thursday, June 3, 2004 3:50 PM EDT
Day 99
Hello friends,
I know I need to update more often, but not much has changed. There isn’t really too much to say now, so this will be short and sweet…or maybe not.
WE ARE COMING HOME! Dr. K finally gave us a date and we’re thrilled! We are allowed to leave any time after the 24th of June. Maddy will have her toobies removed on the 22nd and she needs 48 hours to recover. Then we’re on our way as soon as we can get a flight. I’m trying to arrange a flight with Corporate Angel Network (they are a non-profit organization that arranges free air transportation for cancer patients traveling to and from treatment centers using the empty seats on corporate jets.) Hopefully it will work out. I would rather we didn’t have to put Maddy on a commercial flight with all the germs.
Maddy is holding all of her counts really well. She hasn’t gotten blood for almost four weeks and her platelets held for eight days. We are so excited that things are going well but we know we have a long road ahead of us. Maddy’s recovery process doesn’t end when we leave North Carolina. She will be on several medications for the next year to help build her immune system, fight off infection, and prevent GVH (Graft versus Host.) Unfortunately, there is a chance for relapse so the doctors will monitor her as long as they feel it is necessary. We know that Maddy has the best chance for long-term survival if she makes it through the next year without any major problems. The relapse rate substantially decreases after that.
We will continue to believe that the Lord brought us here for a reason and that Maddy will be healed here on earth…God is good!
Please continue to pray for all the children who suffer from these horrible diseases and the parents who have to watch their children suffer. Pray that they will lean on God alone…He is the only one who can carry them through. Also say a prayer for Jerry Maglio, Mike’s father. (Mike is married to Joe’s sister.) He went to an out patient clinic to have a benign tumor removed and had serious complications that led to bleeding on the brain. Please pray that he will recover from this with no complications and that God will reveal Himself in a miraculous way!
Thank you all so much for your love and support! You are all prayer worriers! We love you!
Then He spoke a parable to them, that men always ought to pray and not lose heart. Luke 18:1
In Christian Love, Richelle, Joe, Ethan and Miss Maddy
Wednesday, May 26, 2004 2:18 PM EDT
Day 91
3 WEEKS! We only have 3 weeks to go and we’ll be back home in sunny California! Maddy’s 100-day tests are scheduled for tomorrow. She will have an echocardiogram (heart test), chest x-rays, pulmonary function test (lungs), a FISH (it tells us if there is any Leukemia in Maddy’s body), and lots of labs to see how her new immune system is doing. In two weeks Maddy will get all of her toobies removed and will have a port placed (a port is almost the same as toobies, except it doesn’t come out of the skin). I know what you’re all wondering. How do we access it? It’s pretty simple really… just think of it as a really little dart board and the bulls eye is where the little needle goes in…and it won’t hurt her thanks to a wonderful numbing cream called Emla. The best part is that The Queen will be allowed to do whatever she pleases…she can go to the beach, take a bath, swim in a pool…she can be a normal kid! I can’t wait!
Maddy is doing very well! She can eat 6 strips of bacon for breakfast and snack until it’s time for lunch. Every night we ask her what she wants for dinner…her response is usually pica (pizza) or chicky nuggies and pries (McDonald’s happy meal) and she devours them! She’s eating more than Ethan is! Now all we have to do is get her to eat more of a variety of things so that she can get the nutrition she needs without supplements. Maddy has also become a free baby as of yesterday! All of her meds are oral so she doesn’t have to be hooked anymore. The only time she will get meds through her toobies is when we go to clinic. Thank you Jesus!
Everything is wonderful! We continue to believe that The Lord brought us here for a reason and that our little girl will live a long life here on Earth. We can’t wait to return home and celebrate that with everyone!
Thank you so much for all of your prayers and kind words! We have been blessed with wonderful friends and family and the support we have received in the past year has been amazing!
Please continue to pray for the Joiner’s, they still have a long journey ahead of them. Also pray for LaKota’s transplant, that everything will work perfectly to heal her and not hurt her so that she can live to be an old women.
Patiently waiting in North Carolina, Richelle, Joe, Ethan, and Maddy Moo
Tuesday, May 18, 2004 7:56 PM EDT
Day 83 WBC 4.5
NO MORE TPN!!! Maddy is finally eating enough that Dr. K decided to take her off the food in a bag! PRAISE GOD!!! Not only is she off TPN, but almost all of her meds are oral. She only has one med IV and that one should be oral in a week or so! Maddy has been on steroids for a few weeks but those are being weaned too! Hopefully her blood pressure will come down when the steroids are gone and she won’t have to take Amlodapine (blood pressure medicine) anymore! Oh yah, she hasn’t had neupogen in 8 days and her WBC is stable. We are so excited!
Today was our long day in clinic, and it was long. The great part is that we were the third family to be seen and there are about 30 families total…and it was 2:30. I am so glad that we are early birds! Dr. K actually said the words “go home,” that means home is just around the corner. Dr. K is very conservative (that’s why we love her) so we knew that we wouldn’t hear those words until she meant them. We are looking at the 2nd or 3rd week of June. I can’t wait to see all of our friends and family! Ethan keeps reminding us that he has a Sponge Bob room waiting for him in San Bernardino, but I don’t think Maddy remembers our house. That’s kind of cool…she’ll think she has a brand new room just for her…pink and all!
I want to thank everyone for your kind words and generous donations! Most of all I want to thank you for being the prayer warriors that we needed to get us through this. Every time we had to face something difficult, we would remember that all of our friends and family were fighting for us in the best way possible; you laid our needs at the foot of Christ and that is the most POWERFUL thing you could do for us! So again, and again, and again…THANK YOU! We love you all!
Please continue to pray for all the families that have lost their children to these terrible diseases and for the ones who are still fighting to save them. Please pray especially for Trevor’s vomiting to cease and for their safe travel home this week. Also pray for LaKota, she is a 5-year-old that needs a transplant desperately but is highly sensitive to chemos. Please pray that she will make it through the transplant and grow to be an old woman.
Rejoice always, pray without ceasing, in everything give thanks; for this is the will of God in Christ Jesus for you. 1 Thessalonians 5:16-18
Still living on faith, Richelle, Joe, Ethan, and The Queen
Friday, May 14, 2004 9:40 AM EDT
Day 79 WBC 6.4
Maddy is 100% better! She hasn’t thrown up in 7 days and she’s eating us out of house and home! I can’t tell you how happy we are to finally see the Maddy we know. For the last couple of months she just hasn’t been herself and we were starting to wonder if she would ever be the same child we had in California.
As you know Maddy was inpatient again due to extremely high glucose levels…. We’re talking 7 times what they’re supposed to be, and she was extremely close to going into a diabetic shock! At first we didn’t understand why this was happening…it seemed like it was coming out of nowhere, but after reviewing what her counts had been doing for a while, we realized that this was just waiting to happen. Maddy had been getting way too much sugar in her TPN, so naturally Joe and I wanted the doctors to take some out. For some reason we were under the impression that they would agree with us…we were wrong! They continued to keep the sugar in the TPN and in turn had to treat Maddy with insulin. WHAT!
Over the next couple of days we repeatedly questioned why they continued giving her the sugar when they knew that her glucose would go up and they would have to treat it with more insulin. They insisted that she needed the sugar and every night when she got her TPN, she needed Insulin. WHAT! We were just about to loose it, when the new doctor on call took her off the insulin and lowered her sugars. PRAISE THE LORD! Maddy began eating and we were starting to see the baby we had thought we would never see again!
After seeing the complete turn around, I started to question a lot of things. Why wasn’t someone watching her sugars more closely? Why weren’t they trying to bring them down when her daily labs were showing that they were too high? WHY WASN’T ANYONE MAKING US AWARE OF THESE THINGS?! This is a problem folks! If we hadn’t taken Maddy into the hospital, she probably would have died! WHAT! We are not willing to loose her over something that could have easily been avoided! Maddy continued to get better every day as they lowered her sugars, and she was released on Wednesday.
Thursday we went into clinic for a check-up and Maddy got to see the doctor that aspirated Ethan’s Bone Marrow, Dr. Phasad. We really like him. You’ll never guess what he told us! He said to Joe and I, “Do you know why Maddy was vomiting so much?” I said, “Because her glucose was too high.” He said, “You are exactly right. Vomiting is a very common side effect of high Glucose levels.” WHAT! I knew she didn’t have GVH! I told Joe every night that I had a strong feeling that Dr. K was missing something and that I wasn’t seeing any clear signs of GVH. I was right! How many times do I have to be proven correct before doctor’s start listening to me! Parents need to be given more credit! This is my child. I know her better than anyone else in the whole world. The only one who knows her better than me is God. So, until someone tells me that God came down from the heavens and told them exactly what was wrong with my child, I will continue to question their diagnosis!
Today was a quick day in clinic and everything seems to be getting back to normal. Hopefully when we see Dr. K on Tuesday we can get Maddy off TPN completely and start switching all of her meds to oral. The sooner we do that, the sooner we can go home. Please pray that her 100-day work-ups are scheduled soon so that we can start packing…we miss everyone terribly!
This whole experience has taught me many things, one of them being that God made every single one of us imperfect. We are all human…we make mistakes and doctors aren’t an exception, but always trust that God is perfect and that He has the perfect plan for all of us…even if we don’t see it!
It is better to trust in the Lord Than to put confidence in man. Pslam 118:8
With men this is impossible, but with God all things are possible. Matthew 19:26
Please continue to pray for The Joiners. Trevor is still vomiting a lot and Janet is at her whit’s end. Also pray that they will have a safe trip home as they finally get to return to Texas where they can be a family!
Still Living on Faith, Richelle, Joe, Ethan, and The Queen
Wednesday, May 5, 2004 9:45 PM EDT
Hello Friends,
Sorry I haven’t updated the web page in a while. Things have definitely been crazy in our neck of the woods! Let me start from where I left off before. Maddy has been vomiting for some time now. About two weeks ago we thought we were starting to get it under control when out of nowhere it started increasing! We added steroids, but that didn’t seem to make a difference. We stopped giving her one of the medications she had been taking for her liver, and that stopped the vomiting at night but she was still doing it two or three times a day! When the things we tried didn’t work, Dr. Kurtzberg told us that it’s most likely GVH (Graft versus Host.) So that’s where I left off last time I updated.
Thursday, April 22, I heard a knock at the door; thinking it was someone delivering medical supplies when they weren’t needed, I was stomping to the door in a huff, saying a few choice words. We had a bad morning and I wasn’t in the mood for annoying mistakes that happen all too often. When I opened the door with the “GO AWAY” look on my face, I was extremely surprised to see Rachel, Mike and Caden standing at my door-step. In fact, I was so surprised that it took me a minute to process it. When I finally did, I started to cry! I think the tears were probably a combination of a long bad day and the fact that I needed family to be here at that moment. We really enjoyed our time with them, and were very sad to see them leave!
Last Wednesday I was consumed with excitement as we waited for Mike, Marian, and Mikey Mitchem (Princess Madison’s family) to arrive from California! It was so wonderful to have them here! We had been counting down the days from the time we left San Bernardino! They have been so wonderful, helping us get through the scariest time in are lives. Their faith in God and willingness to support us, even though the loss of their daughter is still so fresh, is amazing. The day we met them, I told Joe that I thought that God had a purpose for introducing our families. Now I know that God had a reason! Their certainty in The Lord has made our faith so much stronger! We love you guys!
Saturday was The Rainbow Walk. They raised 65,000 dollars for the Family Support Program which provides services to the families on the Bone Marrow Transplant Unit. Over 50,000 dollars was also donated in memory of one of the children that was lost in February (Ross Joiner); those funds will go towards the research to find a cure for Metabolic diseases such as MLD, ALD, Krabbe, Sanfilippo, etc. So many children are suffering from these diseases and unfortunately even though transplant is a possibility for some, the disease progresses so rapidly that transplant isn’t always an option. At the end of the walk there was a balloon release in honor and in memory of all the children who have received a transplant at Duke. It was a very emotional experience as parents who had lost a child or are fighting to save there child had all come together to honor these little heroes! What a beautiful thing to experience!
Yesterday was our “long day” at clinic, but thankfully it wasn’t that long! Maddy’s counts were all wonderful! Her Billiruben was good, her Hemoglobin and Platelets are holding, and her WBC is staying in normal range without the use of neupogen. If we can just get control of the vomiting everything will be perfect! Maddy was a little cranky all day due to the steroids she’s getting to control the GVH, so I was surprised we actually got a good blood pressure. On her best days she throws a fit as soon as she sees that blood pressure cuff coming towards her! Last night she went to bed early and we got to spend the rest of the evening enjoying our time with the Mitchems! It was so nice having an adult conversation, even though all we talked about was our kids! The Angel Baby was the main topic that night; we laughed and cried as Mike and Marian shared their most precious memories with us. Madi was such a courageous little girl, how could she not be with parents like hers! We stayed up till midnight watching the newest version of Peter Pan (didn’t like it!); I fell asleep at the end and woke up only enough to say good night to everyone as I drug myself to bed.
At 2:30 am, Maddy started wiggling around and within 30 minutes she was throwing up (DARN IT!) I sat up and held her as she got all the yuckies out, then laid her down hoping that that would be it for the night. Well, Hoping doesn’t work! I should have been praying cause I was up all night with her. If she wasn’t vomiting she was tossing and turning and after a couple hours of that she was not a happy camper! Finally at 6:00 am I yelled for Joe to come in the room, I was getting worried! When he came in, he turned on the light and we were both worried. Maddy looked bad! She had dark circles under her eyes, she was lethargic, and she was complaining of a headache. After a moment we noticed that her eye lids wouldn’t close all the way and her eyes were kind of rolling back in her head, so we called Dr. K. As expected she told us to bring Maddy to the Unit as soon as possible. The few minutes it took us to get there seemed like forever and the only thing running through our minds were the worst possible things!
When we got to the unit the nurses met us in the hall and took Maddy so they could start assessing her as soon as possible. Within a few minutes they had drawn blood, hooked her up to all the machines, looked her over from head to toe and scheduled a day of testing to find out what was going on. As I went with Maddy up to have a scan of her head done, the doctor came in to talk to Joe. The results from her blood tests were back and they showed that her Blood Sugars were 7 times what they should be, and she was dehydrated from vomiting so much! As soon as we returned from the scan they started her on fluids, antibiotics and insulin to bring her blood sugar down. Our poor little baby was miserable! The scan came back in a matter of minutes and it was negative. PRAISE THE LORD! We were so afraid that she had a seizure while she was sleeping! Later this afternoon some more tests were done to rule out kidney and liver problems, as far as we know those came out good as well.
Maddy is resting well now and hopefully she will get a full night sleep and feel better in the morning. We will most likely be on the unit until tomorrow afternoon, but if Maddy doesn’t seem to be feeling better in the morning, Dr. K and Dr. Parikh (another BMT doctor) will probably want to keep her another day. Please pray that Maddy will be 100y morning, she hates it here!
Thank you for all of your prayers! God is good! Please continue to pray for Trevor Joiner and his family and all the other children on 5200. Also pray for Lauren’s family, she lost her battle with leukemia on Sunday and went to be with Jesus.
Living on faith, Richelle, Joe, Ethan, and The Queen
Tuesday, April 20, 2004 10:34 AM EDT
Hello again,
It is day 55-post transplant and things are great! Today was our day to see Dr. Kurtzberg and get the scoop on how Maddy is doing from her standpoint. All of Maddy’s counts are great! Her biliruben is normal, her liver enzymes are excellent, her blood is holding strong, and she is only receiving half the dose of neupogen every other day (medicine that keeps her white blood count up.) Her body is starting to work the way it’s supposed to…. except for the vomiting!
Two weeks ago Maddy had almost stopped throwing up completely, she was only nauseated in the morning. She was starting to show interest in food…she hasn’t eaten in almost 2 months. We thought she would be eating in no time but she started vomiting again. It started out maybe once a day and every day got a little worse. Now she’s vomiting twice in the night and one or two times during the day. We don’t know what is causing it and we have almost tried everything to get it to stop, but nothing is working. It’s a bit frustrating!
Sunday night Maddy woke up crying and scratching her head like crazy, so we took her to the unit to see the doctor on call. When the doctor looked at her, she was convinced that Maddy was allergic to one of the meds she’s been getting and had developed a drug rash. She gave her some Benadryl and told us to come to the clinic in the morning to be seen. When we got to the clinic, Karen couldn’t believe how bad the rash looked! She had only seen us 2 days prior to that. She talked to Dr. K about it and they decided to vito the medicine (ceftriaxone) and give Maddy a dose of steroids to get rid of the rash. That night the rash was almost completely gone and everything was much better…except for the vomiting!
Today when we arrived at clinic we made sure to address the vomiting issue with Karen right away so that Dr. K could figure out what she wanted to do before she saw us. To no surprise she knew exactly what she wanted to do! She has a feeling that Maddy isn’t only having a drug reaction but she may be experiencing a bit of GVH, so she decided to put her on a small dose of steroids. We were hoping she would suggest that! Steroids can help with all of Maddy’s issues (rash, vomiting, appetite, etc.) Hopefully by the end of the week, Maddy will be eating, and vomiting will have ceased. These things may be alarming to all of you, as they are to us, but don’t worry, Dr. K assures us that Maddy is doing well! She reminded us that Maddy’s body has just been through the ringer and all these things are expected. In fact, Maddy is doing extremely well!
So all in all everything is going good! If we can get the vomiting under control, everything will be great! Please pray that Maddy’s tummy will heal, the vomiting will cease, and for her appetite to increase so that she can actually have a meal with us. Also pray for Ethan, Joe and I, we are really missing our friends and family! It’s starting to give us the blues. Pray that God will give us patience and help us to enjoy our time here as a family. Thank you so much for all of your prayers! That is by far the most wonderful thing you can do for us!
Evening and morning and at noon I will pray, and cry aloud, and He shall hear my voice. Psalm 86:6-7
God Bless, Richelle, Joe, Ethan, and Maddy Moo
Friday, April 16, 2004 4:36 PM CDT
Hello Maddy Fans,
Finally, Good weather! I thought it would never come. This weekend is supposed to bring even better weather, a whopping 80 degrees! Unfortunately, good weather brings bad pollen. Joe and I are probably going to take the kids to the lake, about 11 miles from our apartment, on Sunday. Ethan can’t wait to be out of the house…for more than just a trip to the clinic. He’s had it up to the top of his cute little head with the clinic; that’s almost 4 feet you know! Please pray that the pollen doesn’t make are day a sneezy one!
Maddy is doing well despite the retching and petechiae (peh-TEE-kee-a - Pinpoint, unraised, round red spots under the skin caused by bleeding). About 5 days ago she starting having post nasal drip and when she sleeps at night it drains into her tummy. She still has a pretty sensitive tummy so the mucous upsets it and she wakes up in the middle of the night vomiting. There isn’t much in her to throw up, so she retches for about 5 minutes with no relief, it’s horrible! Today, one of the nurse practitioners at the clinic called in a prescription to dry all the yucky stuff up so that she can get back to sleeping at night. Hopefully it works!
Great news! Maddy’s Biliruben is completely back to normal now and all of her liver enzymes are even better than the doctors like to see! She loves the freedom she has, as we don’t have to go to clinic every day. Dr. Kurtzberg lowered her TPN (food in a bag) and Maddy has more interest in food. If Maddy starts eating enough to sustain her weight Dr. K will take her off the TPN completely. TPN can have an affect on the liver so Joe and I are anxious for Maddy to have an appetite. We would also like to have a night where we don’t have to spend so much time hooking Maddy up and a morning that we don’t have to get up at 6 am to UN-hook her.
Maddy is doing so well! Every day brings us closer to having a healthy little girl. We will continue to trust that God has a plan for her here on earth. God is good!
In You, OH LORD, I put my trust; Let me never be put to shame. For you are my hope, O LORD GOD; You are my trust from my youth. Let my mouth be filled with Your praise and with Your glory all the day.
Psalm 71:1,5,8
Thank you for all of your prayers and support! To our friends and family at home, we love and miss you so much! We can’t wait for the day when we’re reunited!
God Bless, Richelle, Joe, Ethan and The Little Queen
Thursday, April 8, 2004 11:27 PM EDT
Hi Y’all,
This week has definitely been a busy one! Monday was the longest we’ve ever spent in clinic. We got up a little late as we thought we were going to clean the house most of the day and try to get a little time in at the gym. Joe and I started a new diet to try to lose these guts that have some how appeared since Maddy relapsed in December; don’t know how that could have happened! That morning I went to the store to buy all of the healthy food Joe hates, knowing that even though he said he wants to do this I am still going to have to talk him into eating chicken and fish every night for the next month. I wasn’t even finished shopping when our favorite nurse practitioner, Karen, called and told us that Maddy’s hemoglobin (blood) and platelets were low so we had to be in the clinic as soon as possible. There went our day! We were at clinic until 6 PM! By the time we got home it was time to hook Maddy up to all of her meds.
Tuesday is always our big day at clinic and we expect to be there all day. We have to draw tons of labs and wait for Dr.Kurtzberg to assess them and then talk to us about how Maddy is doing. We usually wait for a few hours so that she can come in and tell us that everything is perfect and send us home. That wasn’t the case this Tuesday. Maddy’s labs were showing that her liver counts were high. That can mean many things (Graft versus Host, damage from the chemo, etc…), needless to say Joe and I were a little nervous, Ok a lot nervous! If that wasn’t enough to have us up all night, Dr. K noticed a small rash on the back of Maddy’s neck. Dr. K told us not to worry, to give it a couple of days using the meds she would prescribe, and she would reassess Maddy on Tuesday.
Yesterday, Maddy’s rash was worse and her liver counts were even higher. We were almost in freak out mode when we reminded each other that God is in control. Jeremiah 29:11 says, “For I know the plans I have for you,” says the Lord. “ They are plans for good and not for disaster, to give you a future and a hope.” Before we went home Karen prescribed some creams for Maddy’s rash and listened to every concern we had about what was going on. Thank you Karen for treating us like we were the only people who existed, even though you had a whole clinic full of concerned parents that you still hadn’t seen. YOU’RE THE BEST! When we got home Maddy crashed out on the couch and I ran some errands while Joe cleaned the house (my own personal Mr. Clean). That night we all laid around and did nothing but pray that Maddy’s labs would all be normal in the morning.
Today Joe got up early and drew Maddy’s labs so the lab would have them ready right when we got to the clinic today. I woke up as he was hooking up her meds and realized that Maddy hadn’t woke up at all last night. It was the first night in months that I got a full night sleep! The night before she only woke up once, so maybe this means she’s finally getting back into a routine. Man, would that be nice! When we arrived at clinic today we signed in, went to a room and waited anxiously for the lab results. Karen walked in and told us that Maddy’s labs looked good so far but she hadn’t received the Bilirubin (liver) numbers. Normal Biliruben is 0.2-1.2 and Maddy’s had been at 1.9. Maddy had to get some antibiotics today so a nurse weighed her and we went down to the Rainbow day hospital (where all meds and blood are infused) while Joe and Ethan gathered all of our stuff. We were only in there for a minute when Karen came in with the good news. Maddy’s Biliruben is 1.0 today! PRAISE THE LORD! Her skin is still a little red, but we’re seeing some improvement. We only started the creams last night and the rash isn’t red anymore.
Well, that was our exciting week! We continue to trust that God has brought us here for a reason. We truly believe that Maddy is going to survive this and as soon as we get home we’re going to rub it in Dr. Falk’s face (Kaiser’s Gate Keeper,) and I’m sure there’s a few people who will want to see that!
Thank you all for your never ending prayers and support. We are blessed with wonderful friends and family. GOD IS GOOD! We love and miss you all!
In Christ Alone, Richelle, Joe, Ethan and Maddy Moo
Friday, April 2, 2004 9:14 PM EST
Dear Friends,
Today was such a nice day! Maddy didn’t have to go to clinic today, so we got to stay home and relax. This morning I decided I would get up and clean the house (laundry, kitchen, Ethan and Maddy’s room). When I was finished with that, we took the kids for a walk around the apartment complex and played with them at the park. We got good pictures for those who have been requesting them (Marian). Maddy loves going down the slide! Joe would hand her up to me and I would slide down with her…. And get shocked really hard from the static electricity! Man that hurts!
After playing at the park for a while we went back to the apartment so I could get ready to go to lunch with one of Maddy’s nurses, Lori. We had such a yummy lunch! She took me to an Italian place called Maggiano’s, the Salmon Scaloppini was to die for! It was nice to have an adult conversation that wasn’t interrupted every five seconds. That hasn’t happened for a while! Thanks Lori!
Maddy is starting to create her own blood now, so she doesn’t need transfusions as often. She’s still suffering from leg pain at night, even though the doctors lowered the dose of Neupogen by half. Please pray that her pain will subside so that she and I can get some sleep. Good news! Maddy isn’t vomiting as much any more! It seems that the new medicine she’s on is really helping. It’s nice not having to see her struggle like she was. Thanks for your prayers!
The weather is awful here! We get sun for maybe a day, then it’s raining again. To make it worse, family and friends call us from California and tell us how beautiful it is there. THANKS A LOT! I HATE COLD WEATHER, THAT’S WHY I LIVE IN CALIFORNIA! I can’t wait to get back to Cali and bask in the sun.... with sun-screen of course. I am pasty enough, if I were to live here year round I would be so white that I would blind people. It would be the biggest news story here in the exciting town of Durham, “Pallid woman blinds the folk of Durham.” Heeh, heeh!
Everything here is going as well as I have prayed for. The Lord has blessed me, even through the trials! I get to wake up every morning to my wonderful husband and beautiful children. It’s everything I’ve ever wanted! I pray that God is blessing you all as abundantly as He has me!
But He said to me, “My grace is sufficient for you, for My power is made perfect in weakness.” Therefore I will boast all the more gladly about my weakness, so that Christ’s power may rest on me.
2 Corinthians 12:9
It is with a heavy heart that I tell you that Alex went home to be with Jesus Thursday, April 1, 2004. Please pray that The Lord comforts his family in their time of grief. Also pray for Trevor Joiner, the results came back from his blood test and once again his own cells came back. Pray specifically that God will grant them wisdom and strength as they have already lost one child in transplant. They are devastated and overwhelmed to say the least. I’m sure they would appreciate some encouraging words at this time. Their web site is www.caringbridge.org/tx/joinerboys
Love in Christ, Richelle, Joe, Ethan and the little Queen
Tuesday, March 30, 2004 9:06 PM EST
Hello friends,
Today is day 34-post transplant and Maddy is doing excellent! The doctors lowered her Neupogen (the medicine that helps her cells grows), because her WBC is 16.0 (a normal WBC is 4.0-7.0.) The doctors have kept it high so that her old cells wouldn’t have a chance to come back. Hopefully lowering the dose of Neupogen will slow the cell growth just enough for her legs to stop aching so that she and I can get some sleep at night.
Our visit to clinic was long today, but we knew it would be, so we were prepared. Dr. Pareik was the attending for Dr. Kurtzberg so we got to speak with him about all of our concerns. Of course he made us feel better after telling us that everything that Maddy was experiencing is normal (vomiting, diarrhea, leg aches, etc…). Then he told us that because Maddy is doing so well, we only have to come to clinic 3 times a week. Next week if the vomiting and diarrhea are better, the clinic visits could be cut to only 2 times a week.
Well, I am really exhausted tonight. I think the last couple of days of going non-stop are starting to catch up with me. I’ll update again soon.
Thank you all so much for all of your prayers and support!
In Christ Alone, Richelle, Joe, Ethan, and The Queen
Friday, March 26, 2004 8:32 PM EST
Hello again,
It has been 3 days since Maddy was discharged and it’s getting better every day! At first we were a little nervous, especially because everyone told us it was going to be so difficult. It’s definitely not difficult...actually it’s very easy, as long as you don’t have some person you don’t know watching every move you make for the first two days that you’re home. I don’t care how confidant a person is, that can be extremely unnerving.
Today was our third day at clinic and boy will we be happy when we don’t have to be there every day! Yesterday we were there for 7 ½ hours just to get blood! Can you believe that? Me neither! What made it seem more horrible than it was is the fact that it was the first day in the 2 months that we’ve been here that it was A PERFECT DAY (75 degrees)! We sat in the clinic looking out the window like sad puppies. It was pathetic if I do say so myself.
Maddy’s been so happy at home! The way she is in the clinic is a different story though! As soon we walk in there she gets as cranky as she possibly can. She’s probably thinking, “If I throw the biggest fit possible, I can make them all miserable and then they’ll send me home.” That’s not how it works! She throws a fit (screaming, kicking, eye gouging) then the nurses walk out, close the door and leaves us to deal with the mad baby! Mad babies ain’t no one to reckon with, ya here!
Monday the doctors took a sample of Maddy’s blood to run a test that would tell us if the cells that are engrafting are Ethan’s or Maddy’s. The doctors wanted her to have at least 95% donor cells. They said they usually see about 5% of the host’s cells and 95% of the donor’s. If that were the case, the old cells would eventually die, as the new cells would take over. The results came back today and Maddy didn’t have 95% donor cells. She has 100% donor cells! PRAISE THE LORD!
The Queen is doing so well and we pray every day that she will continue to heal so we can bring her home. We continue to trust that God has an awesome plan for our little girl and that there is a reason we are going through this. GOD IS GOOD!
And we know that all things work together for good to those who love God, to those who are called according to His purpose. -Romans 8:28
Please pray for all of the children on the BMT unit. Pray especially for Alex who is very ill and for his family that God will comfort them and give them peace. Also pray for the Joiners, their son Ross is now with Jesus and their older son Trevor is on his second transplant. Pray specifically that Trevor will engraft with 100% donor cells.
Thank you so much for all of your prayers. That is the most powerful thing anyone could ever do for us!
In Christ alone, Richelle, Joe, Ethan, and The Queen
Tuesday, March 23, 2004 11:05 PM EST
Hello,
WE’RE FREE! I can’t begin to express to you how wonderful it feels to be back at the apartment together! When we walked into the apartment today, the first thing out of Maddy’s mouth was, “Where’s Nana?” It was so cute! After we explained to her that Nana was back home with Papa, we took her in her room to remind her that she has lots of toys. She was so happy to see all of the things she had gone without for the past month. As soon as she saw her toy box she wanted me to put her down so she could get ta playin’! I was worried that she wouldn’t want to walk because at the hospital she didn’t walk at all. She definitely put my mind at ease! She was back to trying to keep up with Ethan and she did great for not walking for the last 2 weeks!
After a few hours of running around and getting reacquainted with the apartment and her toys, she was exhausted! I put on Nemo, sat with her on the couch, and she was snoring in less than five minutes. A family on the BMT unit gave us a crib for Maddy to sleep in and she got to use it for the very first time. I’m so glad we have it, I don’t want to be worried about her falling off the bed every time we put her down for a nap. I want to take that time to relax. Thank you so much Joe and Janet for giving us the crib! We will continue to pray for Trevor’s recovery and for your healing! God Bless you!
While Maddy was sleeping, Joe and I took some time to get all of her supplies organized before the nurse from Duke Infusion came to help us get her meds and TPN started for the first time. Maddy slept through almost all of it until I tried to take her temperature. She was not happy about waking up with something stuck in her ear. Tomorrow morning the nurse will be here again to walk us through the blood draws. I’m confident that Joe and I will have all of these things down before the end of this week. It doesn’t take long for us to adjust to new schedules, we seem to have a new one just about the time we get used to the one we’re currently on. We have to keep things exciting!
Here’s a small look at what our days will consist of for the next couple of weeks. The day will begin with Joe and I unhooking Maddy from the TPN (the food she gets through her toobies), drawing her blood and hooking her up to the meds she will be getting every morning. After the meds are infused we will unhook her and head off to the clinic for her daily checkups (those usually take all day). In the evening we will hook her up to her TPN and run her meds after we have dinner. Maybe by that time Maddy will be ready to relax so we don’t have to force her to stay seated. We’re hoping Maddy will start eating soon so that we won’t have to give her the TPN anymore. That will give us a little more free time in the evenings to just hang out and be a family. It will definitely give Maddy the freedom to be a normal kid. She can’t run around when she’s hooked up, there is no way she could carry the IV pumps and fluids, they’re as big as she is!
Thank you for all of your prayers! Our strength comes from Christ alone! God Bless!
Here’s something to think about; Faith is not believing that God can. It is knowing that He will.
In Christ’s Love, Richelle, Joe, Ethan and The Little Queen
Sunday, March 21, 2004 8:30 PM EST
Hello Friends,
It’s day 26 and Maddy is doing terrific with a WBC of 11.0! Unfortunately, last night wasn’t as great as today. It was my night to stay with the Queen, so of course, she didn’t want to go to sleep until about midnight… that was after Lori (Maddy’s primary nurse) and I decided to drug her up with Benedryl. When we thought we had finally gotten her to sleep, she started tossing and turning. Little did I know that would be the beginning of a very long and sleepless night.
At about 7am the next morning I heard a noise coming from Maddy. It sounded like she was trying to suck on her binky when it isn’t completely in her mouth. I thought to myself, “Richelle, you’d better get up, she’s probably going to throw up.” I got up and quickly walked over to her and knew that was what she was going to do, so I grabbed the barf bucket and sat her up, and sure enough, she puked, and every single drop of it landed in the bucket! HA, HA! I am officially a super mom. I have supersonic hearing, speed and accuracy!
After she was done with her morning throw up session, Lori gave her some zofran and benedryl and Maddy was out! I thought she would sleep for maybe a couple of hours, but we didn’t hear a peep from her until 3pm. SHE WAS TIRED! When she ultimately decided to wake up, she was as chipper as could be! The rest of the day consisted of dancing, singing, reading, and watching Little Mermaid 5 billion times. It’s nice to finally have our sweet Maddy back to her playful self.
Tuesday is still the official day! We’re breaking out of this joint! From the moment we stepped onto this unit I prayed that Maddy’s stay here would be as short as possible. I want her to have as much of a normal life as she possibly can. It’s hard for a 2 year old to be completely happy and carefree in a room this small, hooked up to an IV pole.
Now we have to prepare for home care. We’ve learned how to work the IV machines and are confident that Maddy will do great at home. We need to get back to being a family 24/7. Ethan and Maddy really miss spending all their time together. They are best friends and they love each other’s company! I think it’s going to take some time for us to adjust to our new schedule (clinic visits, blood draws, IV meds…,) but I’m sure it won’t take us long.
Thank you all for your prayers and kind words! They have helped us over the first of many hills we will have to surmount. We know we have a long road ahead of us, but we also believe that at the end of this journey there will be a beautiful valley awaiting us!
God Bless, Richelle, Joe, Ethan and The Little Queen
Friday, March 19, 2004 11:03 PM EST
Hello Maddy fans,
It is day +24 and I am finally amongst the living and allowed to squeeze my little girl. Having the flu is awful! I have gotten so used to seeing Maddy throw up every day that I don’t think about how painful it is. When I was hovering over the toilet all I could think about was how terrible I am. I can’t believe Maddy has to do this every day. She is such a strong little girl! If I were the one doing the throwing up every day, I would be a whiney person. I admire these children up here; throwing up is only a mere fraction of what they have to deal with everyday.
Great news! Maddy’s counts are so high that the doctors don’t even test them every day any more, last I heard her WBC was 7.0. Monday the new cells get tested to see how many are Ethan’s and how many are Maddy’s. The doctors told us that when the children first engraft, they usually wouldn’t see 100% donor cells. Most of the time they see about 95% donor cells and 5% of the old cells, but after time the old cells will die off and the donor cells will take over. They would like to see 95%-97% donor cells in Maddy because she had a sibling match.
Today was Maddy’s first day out and she loved it! She got a three-hour pass so we took her to Duke Gardens (a huge park on campus.) It is beautiful with its brilliant trees and bright green grass. You could sit there for hours and stare at the sun gleaming off the pond. Maddy was so happy! She and I sat by the pond in silence while Joe and Ethan wondered around. She didn’t have to say a word; I could see how happy she was even in her silence. It was such a beautiful day, perfect for Maddy’s first day out.
On the way back to the hospital Maddy started throwing up. I knew that was going to happen! As soon as I heard the first cough I whipped out the mini barf bucket I had in my purse and pulled down her mask just in time for the puke to land in it. MAN I’M GOOD! Maddy was still a happy girl though and as soon as she was done she began to talk, talk, talk about everything she could think of. The happiness soon went away when she realized we had to go back to her room. She looked at the door like it was the most hideous monster she had ever seen. As soon as we walked in the room she started crying and pointing outside. I felt so bad!
At about 9 pm Maddy’s nurse Lori came in to give the queen her blood pressure medicine. Maddy didn’t want any part of it but we forced her to take it any way. I turned around for just a second when Lori said, “Richelle look!” When I turned to see what was wrong, I couldn’t believe my eyes! Maddy was giving Lori the bird, and not the one that goes tweet, tweet! It must have been a coincidence but what a good one!
Well, it’s almost 11 pm and I’m beat. That’s all she wrote! Until next time.
God bless, Richelle, Joe, Ethan and The Little Queen
Wednesday, March 17, 2004 4:25 PM EST
Hi everybody–
This is Marian, a friend of Richelle and Joe’s. They just wanted to get out a quick update so everyone would know that Maddy’s counts are doing great! Her WBC is up to 3.0 and her ANC is over 2000. She is still experiencing the mucousitis and is still vomiting quite a bit, but overall she is doing well.
Unfortunately, Richelle is now DOWN with a really bad case of the flu...which means she’s stuck at the apartment trying to take care of herself and Ethan, while Joe is stuck at the hospital cleaning up after Maddy and trying to keep things together there.
The hope was for Maddy to be released on Friday, but since she is still experiencing so much bone pain and is still throwing up so often, it looks like she’ll probably stay in-patient til some time next week. She is completely off of the PCA pump (the pain med) and they have changed her over to Methodone. She will probably remain on that for another couple of weeks. One of the nurses even thinks the vomiting may be caused from withdrawals from the Fentenyl, but it’s hard to say. Now that Richelle has the flu, we’re all just praying that Maddy doesn’t have it too.
Please keep all of the Bates Family in your prayers as they could all really use some strength from above right now. (A few words of encouragement on the guestbook are ALWAYS appreciated!)
Sincerely, Marian Mitchem For Richelle, Joe, Ethan and The Little Queen
Sunday, March 14, 2004 12:10 PM EST
Good morning,
It’s day +19 and Maddy’s WBC is 1.7. That means we’re breaking out of this joint soon! Tomorrow we will be meeting with Lee from Duke Infusion (Duke Infusion prepares us for taking care of Maddy at home.) Before we leave the hospital, Joe and I will have to learn how to work the outpatient IV pumps so that we can take care of the little queen. She’s still not eating so she has to continue receiving her nutrition (TPN) through her tubies. The doctors tell us this is normal and that she will gradually get her appetite back over the next month or so.
Yesterday was Maddy’s birthday! SHE’S A BIG GIRL NOW! We had a little birthday party for her in the family lounge and most of the little kids on the unit were there. She and the kids were having fun, but not as much fun as the parents had! They were enjoying one of the toys I got for the kids (an ice cream cone with a spongy ball on the end, you push the button on the side of the cone and it launches the sponge across the room.) Good thing it was a spongy toy or we all might have come out of there with some significant injuries.
It didn’t take long for all of the kids to get tired. The parents, on the other hand, have been cooped up in here for too long, and even though we’re exhausted, we’ll take any chance to get out of our rooms (jail) and have a normal conversation with another adult. Maddy was starting to feel crummy so she said her good-byes and Joe took her and Ethan back to the room while I cleaned up.
I returned to the room about 30 minutes later and as soon as I walked in, Maddy started throwing up. It was like she waited for me...thanks for my party mom, I have something for you! After she was finished, the nurse gave her some zofran for the nausea and she laid back and relaxed for the rest of the day. All in all it was a good birthday, as good as it could be on a Bone Marrow Transplant Unit.
Last night Maddy’s heart rate was up and nobody really knows why. Usually when their heart rate is up its because they have a fever, but Maddy’s temperature was perfect. Her lungs sound great and her kidney and liver functions are impeccable. The only thing they can come up with is that Maddy could be in pain due to engraftment and that could sometimes elevate the heart rate. Hopefully within the next few days she will start to feel better and her heart rate will be normal. She and I could both use some sleep; maybe we can take a nap today.
Please pray that Maddy’s heart rate will return to normal, and that whatever pain she’s experiencing will disappear.
Thank you so much for all of your love, support and encouraging words. Please continue to sign Maddy’s guest book. It truly helps to read all of your entries!
God Bless, Richelle, Joe, Ethan and The Queen
Friday, March 12, 2004 8:50 AM EST
Hello Friends,
Maddy’s WBC is 0.4 today. She is engrafting at a perfect rate. Dr. Martin came in yesterday, as he does every day, and said that Maddy is doing everything the way they want her to. He also told us that if Maddy keeps doing this well, she will be able go home to the apartment next week. Her discharge date is set for Wednesday, March 17. Keep your fingers crossed and keep praying that Ethan’s cells will engraft with NO COMPLICATIONS.
Maddy is starting to get back on a regular sleep schedule. Last night she went to bed at 7 pm and didn’t wake up until 6 am this morning. Unfortunately, I am not following Maddy’s example! Last night I stayed up until 2 in the morning reading caringbridge sites. You’d think I would learn to sleep when Maddy sleeps, but instead I torture myself. I don’t tell Joe that though! I give him a sad story about how Maddy was restless and kept me up all night. That way he feels bad and I get spoiled. Women, we are so bad, and no one can tell me they haven’t played those cards before because it would be a lie.
Maddy’s spunky little personality is back and going full speed. Usually right after she wakes up in the morning she throws up, naps for an hour, then she’s ready to start the day. The last couple of day’s she’s been trying to give me some warning by sitting up and pointing at her bucket, so this morning when she gave me the warning, I jumped up, grabbed the bucket and the suction and got in position. Maddy grabbed the bucket, spit out the binky, looked at me and said, “HA HA!” I could have died laughing! What a sneaky little girl!
Maddy is such an inspiration to me. She has been through more than most of us ever have or ever will, yet she continues to be cheerful, witty, and full of life! Every day I thank God for my children. I am so blessed! He gave me His children, His most precious possessions, and trusts that I will care for them! Being a parent has been the most fulfilling thing I have ever done and nothing will ever compare!
I will praise You, O Lord, with my whole heart; I will tell of all Your marvelous works. I will be glad and rejoice in You; I will sing praise to Your name, O Most High.
-Psalm 9:1-2
Thank you so much for all of your love, support and encouraging words. My prayer for you is that God blesses you as He has blessed me! GOD IS GOOD ALL THE TIME!
In Christ’s love,
Richelle, Joe, Ethan, and The Queen.
Wednesday, March 10, 2004 7:15 AM EST
Hello, Hello, Hello,
It is 5:30 am here in Durham and Maddy is wide awake and ready to go! The last couple of days have been wonderful! Maddy is starting to grow cells, so all of the yucky stuff is beginning to disappear. Monday, Maddy had a really good day, it was the first time in days she wanted to get out of bed and go into the hall to play. She wanted me to push her on her bike and I was elated! I was ready to push her, the IV pole, and her baby around for hours, but I didn’t think I would have to!
Monday afternoon Joe and Ethan arrived to Maddy sitting at her hospital room window basking in the sun. She was saying hello to the birdies…and the clouds…. and the trees…and the grass and anything else she could find. I made sure to get it on video and Maddy made sure to be extra cute, knowing that the video camera was pointing in her direction. After a few hours of visiting, Ethan and I gave Maddy and Daddy lots of kisses and headed home so that stinky mommy could take a shower.
Tuesday morning at about 10:00 Joe called to tell me that Maddy had finished her morning puking and she was ready to go, even though she was up playing until 2 am. Saturday is the Queens birthday so Ethan and I went to the mall to get her some birthday presents. Ethan got to ride the carousel again and I got to window shop. I could window shop for hours but not when Ethan is dragging behind like he had just gotten off a battle field, moaning and whining and trying to convince me that if he goes another step, he’ll just die! So I shopped some more. Hee…Hee!
Tuesday afternoon, Maddy was still happy. She wanted to ride her bike again so we taped her baby to her waist and went on our way. I had to attend an infectious disease meeting with the other parents on the unit and Dr. Martin, one of the doctors on the BMT team. We all voiced our concerns and asked lots of questions. Dr. Martin was really helpful in answering all of our questions and made sure to write down all of our concerns so that he can present them to whoever needs to address them. That meeting just reconfirmed why we’re here. The people caring for our little queen are dedicated to healing the children on this unit and it shows!
Last night Maddy went to bed at 8:15 pm and I got some quiet time and watched some reality TV. I forced myself to go to bed at about 10 pm, and good thing I did because Maddy tossed and turned all night. I figure, between 10 pm and 5 am I got at least five hours of sleep and five hours is good. Now it’s 7 am and Maddy got rid of all of the yucky stuff from her tummy...there’s nothing like having your child throw up on you first thing in the morning! Now she’s napping, but I’m sure she’ll be ready to go by 10.
OH YA, MADDY IS 0.2 TODAY! GROW CELLS GROW!
Yet I will rejoice in the LORD, I will joy in the God of my salvation. The LORD God is my strength; He will make my feet like deer’s feet, and He will make me walk on high hills.
-Habakkuk 3:18-19
In Christ’s Love, Richelle, Joe, Ethan and The Queen
Sunday, March 7, 2004 10:23 PM CST
Sunday March 7, 2004 - Day 12
Hello again Maddy fans!
First of all let US say a BIG THANK YOU for all the donations to the Miracle for Maddy Fund. Arrowhead Credit Union keeps a running total of the balance and deposits, but they cannot disclose who makes the donation and the amount. We would love to send thank you cards to each individual that donates, but that is not possible with the way the fund is set up. PLEASE KNOW....HOW VERY MUCH WE APPRECIATE THE HELP....YOUR DONATION MEANS EVERYTHING TO US AND WITHOUT IT....WE COULDN'T MAKE IT HERE. YOU MAKE IT POSSIBLE FOR US TO BE IN NORTH CAROLINA FOR THE TREATMENT THAT MADDY DESPERATELY NEEDS AND MUST HAVE TO LIVE.
A special thanks to the Ontario FAA Baldies, their haircut fundraiser raised a thousand dollars for us and a Crown Consulting employee matched that amount. This fundraiser is greatly appreciated by Maddy and Family. No matter what anyone says....we think BALD (or really, really short hair) IS BEAUTIFUL!
The last couple of days have been really good. Maddy wakes up a little cranky but after an hour or so she is ready to play. She makes me read books to her over and over until my eyes cross. I don’t know why Joe and I bought her the Leap Frog reading toy because it never gets used. We end up doing all the reading and the toy collects dust.
Friday and Saturday I got to be home with Ethan while Joe stayed with Maddy. I thought that it would give me a chance to get some rest but when I got home I didn’t know what to do with myself. This last year has trained me to be a busy person, so I always have to be doing something or I drive myself crazy. I took Ethan to the mall and let him ride the carousel, eat lots of junk food and run around so that he would wear himself out. Did it work? NO! He’s a boy. It wore me out though!
Today, I returned to the hospital; Maddy was not feeling well at all. She had been vomiting since 3:00 a.m. It took three doses of anti-nausea medicine before she could finally relax. She fell asleep at about 1:00 p.m. and does not want to be disturbed! The nurse had to give her some medicine to make her urinate because she is gaining weight due to water retention. So now she urinates more frequently and I have to change her more often, and that means disturbing the little Queen during her slumber. She makes it known that she is not happy when I’m changing her diaper (There’s a little kicking, some eye gouging, maybe some spitting), I’m kidding; a lady never spits... especially a queen!
Her white blood count is 0.1, which means that Ethan’s cells are beginning to make themselves at home in her body. I’m not surprised; Ethan is really good at making himself comfortable in his surroundings, so it makes sense that his cells would do the same. Everything is going well despite the vomiting.
Ethan told me today that he thinks this is a nice town, but he says that he couldn’t stay here forever because he misses his Papa. The other day he said to me, “mom I think it’s time for me to move back to San Bernardino with my papa.” When I told him I would be sad and cry all the time he said, “okay, I’ll stay, but papa has to come see me soon." We made a deal, so Nana and Papa had better come or I’m in trouble! Ethan never forgets a promise.
Well, I guess that’s all for now. We miss all of you terribly and hope to see you real soon.
Thank you to all of you who have supported us through these trying times. The Lord has blessed us with wonderful friends,family snd even people we don't know. GOD IS GOOD ALL THE TIME! God Bless! We love you.
Now hope does not disappoint, because the love of God has been poured out in our hearts by the Holy Spirit who was given to us. –Romans 5:5
In Christ’s Love, Joe, Richelle, Ethan and the Queen
Thursday, March 4, 2004 10:31 PM CST
Days 4-9
Days 4-9 have been about the same and the mucuositis is really taking it’s toll on Maddy – she’s so crankie and restless; nothing we do makes her happy. The rash on her body has been slowly disappearing, however, the sores in her mouth and throat are worse and she barely has a voice now.
Yesterday, she seemed to be doing better, actually played and seemed happy. She did well the whole day until she awoke from her nap and then she turned into “crankie Maddy” again. Last night she did not sleep and neither did Daddy (it was his turn to stay with her), so this morning when I showed up for my shift, both of them were REALLY GROUCHY!
Joe left to go home (poor Ethan). I’ve been trying to keep Maddy comfortable all day...to no avail. Hopefully, the adjustment to her pain medication with take affect and help her get some rest tonight (me too!).
We are playing the waiting game and hoping that we don’t have to wait too much longer. The doctors say this is normal for a bone marrow transplant and as soon as Ethan’s bone marrow engrafts in her body, she’ll start doing better. That’s really all for now.
Nana Carol left for California yesterday and we miss her already. I know she misses us too and wishes she was still here to help us, but Papa Greg is lonely for his woman...and needs her comfort now.
Please continue to pray...especially that Maddy gets restful sleep and that the engraftment takes hold and her mucousitis will start to subside.
THANK YOU ALL SO VERY MUCH FOR ALL YOUR THOUGHTS, PRAYERS, FINANCIAL SUPPORT AND YOUR DEDICATION TO MADDY’S RECOVERY.
Friday, February 27, 2004 6:04 PM CST
Post-Transplant Update
Day 1 (2/25/04) – The day after the transplant Maddy was full of hives, but in good spirits. I decided I was not too tired to take Maddy into the hospital family room to play and she was so excited. We got Maddy a new bike a few days ago and she loves for me to “push” her on it. After about 15 minutes of playtime, I noticed Maddy was starting to act a little funky….she gave me this funny look and before I knew it she “hurled” into the little mask she has to wear. She took off her mask and handed it to me like it was a “prize” and continued to play. She wasn’t happy with me when I reminded her that even though she’s the little queen she has to wear a mask at all times when she is out of her room….that didn’t go over too well…so we headed back to her room. Needles to say…there was screaming and some thrashing!
That evening, the vomiting continued and so did the crankiness. I gave her a bath and tried to make it as pleasant as possible, but with the rash on her bottom…she was not in the mood for a bath! After settling into bed, I gave her a few pushes (of the PCA pump) of morphine and that helped her fall asleep. I thought I’d be able to get some sleep that night, but of course, Maddy woke up vomiting every hour.
Day 2 (2/26/04/) – Maddy and I didn’t wake up until 11:30 a.m. (EST). We were both exhausted – her from hurling and me from frantically jumping up out of bed every time I heard a noise from her direction. Dr. Driscoll (one of the many doctors on her team) came in for the morning rounds and assured us that everything is going well and on track. I expressed to him that Maddy was vomiting quite a bit and experiencing some discomfort due to mucousitis. All the vomiting is caused by mucousitis (which is caused by chemotherapy). Mucousitis develops because the chemotherapy inhibits the body from creating the fluids it needs in the stomach and mouth – it’s so dry it creates the sores, which then bleed when she vomits.
Dr. Driscoll decided to put her on a continuous morphine drip and didn’t address the vomiting issue. So Maddy slept all day, but woke up every hour to vomit. I soon tired of seeing Maddy vomit so much so I told the nurse that Maddy needed something for the nausea and to take her off the continuous morphine drip and just leave her on the PCA pump. That seemed to work great…Maddy started to act like herself again and I actually got a full night’s sleep.
Day 3 (2/27/04) – Today Maddy woke up feeling a little nausea but after vomiting once, she felt much better. Nana, Daddy and Ethan came to see us and Maddy wasn’t sure if she should be happy that Ethan was there or mad….because she had to share her toys. She warmed up to Ethan and they played together and then relaxed together. Then she decided she wanted to look out the window where Nana was sitting….what a chore….moving the machine over to the other side of the room….but she was happy and played at the window for awhile. Then she decided she wanted Daddy to push her on her bike but because “queens” can change their minds, she discarded Daddy and insisted on Ethan pushing the bike down the hall.
It’s Daddy’s night to stay, so I left with Nana and Ethan and went home. Hopefully, the rest of the day will go well for Maddy and her and Daddy will both get a good night’s rest.
Tuesday, February 24, 2004 8:57 PM CST
TRANSPLANT UPDATE... NEW PHOTO'S
TODAY WAS THE DAY! The day our daughter got a new chance at life, thanks to her courageous brother and of course, GOD! Ethan was a trooper! He was in a good mood; he even talked to the nurses and doctor before his procedure (totally unlike “Mr. Shy”). They gave him some oral medicine that made him very happy...he thought the light on the end of his finger looked like a sucker (candy) and started laughing. They gave him sleeping gas and told him to inhale, which he did, VIGOROUSLY, and about a minute later he was out.
They withdrew 360 mls of bone marrow and depleted the red blood cells and t-cells (t-cells are the cells that cause Graft versus Host, THAT’S VERY BAD!). When they brought it up to the room for Maddy, it looked like red Kool-Aid. Ethan was so proud of his donation...it made him feel really special. Ethan received his very first tattoo yesterday, it was an X, the X that marked the spot, and yes, today they were digging for treasure, PRICELESS TREASURE! He is still very tired, the sites on his hips are really sore and his back hurts pretty badly – he is trying to walk tonight with some success. No bath tonight and bandages stay on until tomorrow. We took pictures of all of us holding the bone marrow and Ethan lying in bed with his beloved sister.
It took about 45 minutes for Maddy to receive Ethan’s bone marrow. Shortly after the process started, she had a terrible reaction...there were hives, vomiting and her oxygen saturation dropped really low. We had one nurse practitioner, 3 nurses, and two doctors in that little room plus all of us. Most of her vomit was mucous which made it harder for her to get it out– she was miserable. We were all scared to death...Joe and I cried. I can’t even begin to explain to all of you the thoughts and feelings that had over come us for those thirty minutes. The doctor said that sometimes children’s bodies would react this way to new cells being introduced and that made me feel a little better. They gave her steroids and benadryl to counteract the reaction. It took about 30 minutes to get the reaction to the new cells under control. THANK YOU JESUS!
Tonight they will give us a PCA pump (this allows us to give her morphine on demand). We will be able to give her morphine as needed without having to wait for a nurse to draw it up. She will have morphine before we change her diapers and do mouth care as diaper rash and mouth sores are becoming very painful due to low white cell counts.
After everything settled down, Joe took Nana and Ethan home so Ethan could rest and when he returned to the hospital, Maddy was covered in a horrible rash. After a few hours, it started to clear up and Maddy was sleeping soundly. Well, that’s just one more hurtle we’ve made it over. God is good and He will continue to get us through the bad days until we beat this horrible disease and we will continue to trust that HE WILL!
Happy Birthday Madi Mitchem! We love you and our thoughts have been with you today.
Our home address in N.C. is: 1000 Slateworth Drive, Apt. # 1007, Durham, North Carolina 27703.
We have had some problems downloading our pictures....so keep checking the photo section... we will update them as often as we can.
Monday, February 23, 2004 10:38 PM CST
HI Y’ALL! (do I sound southern yet?)
Maddy has been in the hospital since last Sunday, 2/15. Chemotherapy went well last week, but I think her body started feeling the effects of the chemo on Saturday, 2/21. She got her first dose of ATG at 3:00 p.m., which she gets for 9 hours per day for 3 days. She seemed to be doing well until around 9:00 p.m. when she spiked a fever (103) and got horrible hives (bad welts but normal symptoms for this medicine). She was so uncomfortable they gave her morphine to ease her pain. On Sunday morning (2/22) she had the sores in her mouth (another symptom) and was uncomfortable. She still has hives, but between the morphine and benadryl, at least she slept most of the night. I didn’t get to sleep until 3:00 a.m. uck!
On Saturday (2/21), the kids in Unit 5200 received a visit from some of the pit crew for NASCAR drivers, Jeff Gordon and Brian Vickers (Hendricks Motorsports Team). They came bearing gifts for all the kids’...what a TREAT! They passed out bags of goodies to all the kids…really neat items that the kids like...from T-shirts & hats to specialty crayons, matchbox size race cars, coloring books, driver posters and lots of other things. Some of the items in Maddy’s bag were a cute little “princess” shirt and baseball hat that fits her perfectly with Disney characters on it, crayons in a plastic container that are shaped in her favorite “Pooh” characters, with coloring book, a race car just to name a few. Ethan received a package stuffed full of goodies as well. It was so very kind and thoughtful of the crew to take the time to come to the hospital and see the kids! THANK YOU! THANK YOU!
Maddy was in a great mood on Sunday. She wanted Ethan to sit in bed with her and she hugged and kissed him, rubbed his hair and touched his face so tenderly. They had a great time together, laughing, playing and lov'n on each other. We bought Maddy a little tricycle (small one) that she can pedal or we can push her if she's too tired to pedal. It also can be made to rock. She loved it! Though it's small, I have no idea where we'll store it in the room.
A local church (Macedonia Baptist) came by Sunday to offer prayers for the children and families of Unit 5200 and to pass out calling cards to each family. We received two 120 minute calling cards...THANK YOU SO VERY MUCH! We also have two 60 minute calling cards provided in our “Welcome Packet from Duke.” The love, support and caring of people we don’t even know is very heartwarming and we appreciate it so much. These will certainly help us out since everyone we know is LONG DISTANCE!
Today (2/23), Ethan underwent some tests and the doctor put a “tattoo” on both hips (actually marks where they will withdraw the bone marrow but Ethan thinks they’re tattoos) and he couldn’t wait to show them off when he got back to Maddy’s room (Nana Carol took a picture). He seems to be handling the situation fairly well. He knows he'S giving Maddy his bone marrow to help her. They will give him something to put him to sleep before they insert the I.V. which is good because he's scared of needles (like Aunt Sissy) and a "drama king" to boot. When he wakes up...he’ll be able to go to Maddy’s room and watch her receive his bone marrow...Maddy’s Hero!
Today we decorated Maddy’s room in flowering vines (artificial of course) and butterflies. It looks really cute (pictures to be posted soon). We have her Maddy’s fans picture poster up along with a “meemo” poster, her name done on silk and a flower Ethan brought to her.
She was given her last dose of ATG today. She still has major hives and needed morphine again. But she's really a good girl considering all she’s going through.
Tomorrow (2/24) is the BIG DAY – BONE MARROW TRANSPLANT DAY! We pray that Ethan’s bone marrow will engraft properly and quickly...and that there will be no complications. KEEP PRAYING!!! We’ll update again on Wednesday, with the all the details of the transplant and new pictures.
Joe, Richelle, “the little HERO and the little QUEEN”
Wednesday, February 18, 2004 8:11 PM CST
Dear Family and Friends...
Maddy was admitted to Duke University Hospital on Sunday, February 15th to begin chemotherapy. Our room is small but nice, with a small refrigerator, TV/VCR/DVD, Murphy bed for me if I choose to use it but I usually sleep in the regular bed with Maddy.
Some of the chemotherapy is thick and nasty tasting and must be taken orally – which Maddy would just spit out, so they inserted a NG tube up Maddy’s nose and down her throat into her stomach...she didn’t like that AT ALL! Once the oral chemotherapy is done…they’ll remove the tube. It is taped to the side of her face, and she doesn’t really notice it until she swallows. I think she’s started to lose her taste….some food she usually eats doesn’t taste good. I gave her a cheez-it and she tasted it and gave me a look like what is this??? Doesn’t taste like a cheez-it mom!
We’re allowed to decorate the rooms. The little girl down the hall has her room decorated with vines and monkies….very cute. I made Maddy a poster of pictures of family and friends (so she won’t forget) entitled Maddy’s Fans. I also hung a butterfly poster up and we had her name done on silk by a Korean lady at the mall with the letters done in pictures….kind of hard to explain…but it’s beautiful….we hung it above her bed. And last but not least a Nemo poster (or as Maddy calls him “Meemo”).
In order for Maddy to go for a walk in the hallway, she must wear a mask...so I bribed her with a bike ride if she would wear the mask...that’s all it took...she wears it now without a problem. She’s so cute with her mask...we’ll be posting pictures soon.
I’m not looking forward to the ATG. ATG is a drug (derived from horses) that wipes out her immune system completely. It causes fevers, hives and sometimes a rash on the bottom.
We’re getting to know some of the families around the unit which is nice. It’s always comforting to know that other people know how you’re feeling...even though you wish none of these children had to go through any of this. Joe spent the night with Maddy last night and thought he was smoooooth because he got her to bed a 8:00 p.m. but she woke up an hour later and stayed up til 12:30 a.m. Dad will soon find out that he should listen to mom...bedtime is at 10:00. He slept on the small Murphy bed in the room that fits me perfectly (5’2” he's 6'4"), but it was like sleeping on a couch cushion for him. It’s beside the window and he FROZE!!! Needless to say, Joe was happy to see me this morning and isn’t looking forward to the next 5 weeks of taking turns at the hospital, although he misses Maddy tremendously.
It snowed 3 days this week… a few inches and there was a beautiful white blanket covering the town...of course, I wasn’t thrilled after our last snow experience. But the sun is out and it’s melting fast. We’re supposed to have a “heat wave” at the end of this week...a whopping 50 degrees! Pull out the bikinis girls...we’re going to the beach (haha)!
We still haven’t experienced a horrible nurse yet... everyone is great. Everything is going well for now. Enjoying our good times...preparing for the bad.
We miss everyone in California and send heartfelt LOVE and APPRECIATION for all the love and support you've given us. We really enjoy reading your messages in the web page journal – it lifts our spirits and is very encouraging. We are so grateful for your continued prayers to our Father on High.
Love,
Joe, Richelle, Ethan and the "Little Queen"
Wednesday, February 11, 2004 9:15 PM CST
Dear Family and Friends – FINALLY AN UPDATE!
I apologize for not updating the web page sooner. We had a little problem with the computer and finally got high speed internet installed in the apartment yesterday. We’ve been so very busy with many tests for Maddy and Ethan – more tests than you can imagine! We’ve been at the hospital everyday on an outpatient basis.
Maddy got sick last week and ran a fever. They have been treating her daily with antibiotics through her tubies. Her surgery for the additional catheter in her chest and the bone marrow biopsy that was originally scheduled for 2/3 and chemotherapy to begin on 2/10/04 was set back a week. Maddy had surgery yesterday (2/10/04) for the additional catheter, bone marrow biopsy and chemotherapy in the spine - now she has 3 tubies. Surgery went well, but she experienced some nausea and was really mad when she woke up. She will enter the hospital on Sunday (2/15 – my 25th birthday) for 9 days of chemotherapy. On day 10, Ethan will be admitted and his bone marrow aspirated. They will deplete his T-Cells and prepare the bone marrow for Maddy. After Ethan wakes in recovery, he will be taken to Maddy’s room so he can see her get his bone marrow. Afterward, the nurses give him a little party for being Maddy’s hero.
Last Thursday, Maddy had a CT scan. It showed a spot on the brain, cloudiness in her sinuses and her pancreas and spleen were enlarged. Dr. Kurtzberg thought the spot on the brain could be a small bleed when her platelets were low. They suspected that the cloudiness in her sinuses might be leukemia (but didn’t want to alarm us with their suspicions). Dr. Kurtzberg ordered a MRI which Maddy underwent on Monday 2/9. The results were good…the cloudiness was not leukemia PRAISE THE LORD! and everything else was normal considering her condition.
We met with our case manager, Jayne Cash and Dr. Kurtzberg this morning to talk about the transplant procedure and everything related to it - scary stuff!!! Then we took a tour of the “5200 unit” where we will be staying. Maddy will remain in the hospital for a period of 5 weeks after transplant. Then we must remain in North Carolina, (outpatient basis), for a minimum of 100 days post transplant. If all goes well, we will most likely be here for 4-6 months barring no complications. If complications develop, we could be here a year. The bone marrow transplant is scheduled for February 24th.
We’re finally finding our way around Durham and Raleigh. Joe has mastered the oddball freeways and roads here and knows exactly which way to go when we leave the house. Nana Carol and I got lost coming home from the store the other night (Nana Carol’s fault) we left while it was daylight, but started for home after dark...got turned around and had to call Joe who gave us perfect directions to get home. Things are more spread out here – running to the store isn’t a few blocks away…we have to get on the freeway to get there. It’s not too far…but not real close.
There is the largest mall (bigger than Ontario Mills) here in Durham….it’s like a little city all its own. It would take a couple days for the normal person to get through it, but I could do it in a few hours – ha!
Last Saturday, after Maddy’s treatment, we drove to the coast (150 miles from Durham). We got sidetracked by a sign to tour the U.S.S. North Carolina battleship (World War II vintage - moored on the Cape Fear River for restoration). It was really interesting, but Maddy was a terror that day (actually she’d been a terror since last Tuesday) which made the tour a little stressful. After the tour, we drove to Carolina Beach and touched the Atlantic Ocean.
For some reason, we thought it would look different, but it looks just like the Pacific Ocean...except 99f the beach houses are built on stilts (we assume to weather hurricanes). Beach homes here are very affordable here (well, compared to California) so if you want to have ocean front property, North Carolina is the place to buy one. The sand is a little different – more coarse and darker in color than the west coast. The temp was a brisk 59, but the wind chill made it colder....we didn't stay out too long.
Nana Carol is a history buff and if she had her way, we would have stopped at every battlefield between Durham and the Atlantic Ocean – just to look the grass where the Confederates and Yankees fought the war. You would think there would be a ton of seafood restaurants to eat at…but most were closed in the winter and we drove around for hours looking for one. We wound up in Wilmington, N.C. which is a wonderful little town on the Cape Fear River, with lots of history and lots of old buildings. We finally found a restaurant and waited an hour to be seated.
We have met several other families that have children with different diseases. One couple in particular came all the way from the Netherlands to have their son, who suffers from Krabbe disease, treated. The doctors in the Netherlands gave them no hope…after an internet search, they found Duke University and packed up 3 suitcases and headed to America – they are surviving on donations alone -(www.caringbridge.org/europe/dylan - they write in dutch and English). Going to N.C. from California was a biggie for us, I can’t imagine crossing the ocean to another country...but would do it in a heart beat for my children. The following article was in a newspaper here in Durham – reading it will give you an idea of what families go through to be here. http://www.newsobserver.com/features/sundayjournal/story/3314505p-2956233c.html
The weather has been cold (at least to me...Joe and Nana Carol are hot all the time – so I’m sure this is perfect weather for them). There is a little playground here at the apartment complex but most days its too cold for Ethan to go out...causing cabin fever. Tomorrow, we’re supposed to get snow...oh joy!
Papa Greg’s dad passed away last Saturday, February 7th. We wish so much we could be there for him during this time. Nana Carol really misses her hubby...but they understand our time is now with Maddy. Pray for Greg and his family for peace and comfort at this time.
We miss everyone in California and so appreciate all the love and support. We really enjoy reading your messages in the web page journal – it lifts our spirits and is very encouraging.
Once again, we send heartfelt LOVE and APPRECIATION for all the love and support you've given us...blood donations, words of encouragement, gifts for Maddy and us, your messages in Maddy's website guestbook and your prayers to our Father on High.
Update on John Alvino: John had surgery for the Orbital Cellulitis and it went very well, the doctor feels that he got most/all of it and the prognosis is good...although the doctor said it could come back in the future.
Continue to pray for Melissa Valdez who suffers from a variety of health problems, one of which is tumors. And for all the children that suffer from dreadful diseases (Krabbe, Sanfilippo, MLD, ALD, leukemia and other cancers to name a few) - you don't realize how many there are until you're in the midst of all of this.
In Christ....
Richelle, Joe, Ethan and "The Little Queen"
Sunday, February 1, 2004 8:27 AM CST
We finally moved into the apartment on Wednesday, 1/29 at about 4:00 p.m. It was sooooo nice to take a real shower (hotel shower was terrible....we could spit faster than the water came out!).
The apartment is beautiful and large (1,200 sq.ft.). The complex is really nice and has a lot of amenities. Having an attached garage is a real asset with the cold weather. We're not quite settled yet....but should be by today.
Papa Greg and Rick left this morning for California. They arrived on Tuesday and got to see a few historical points of interest while here.
Durham is a very confusing city to drive in. The freeways just seem to overlap and go in circles. Their north is really east and we've gotten sooooo lost a few times. Joe seems to have a real handle on directions though and does the best. Papa Greg drove, Nana Carol was the navigator and with the crummie directions/maps/confusion....all they did was argue. They got lost several times and it was very frustrating! The maps and directions here are wrong and they've been doing freeway construction here for years and won't finish til 2007....another problem with driving!
Maddy is scheduled for chemotherapy on 2/11 and then 10 days later will receive Ethan's bone marrow. We are anxious but nervous as well. We know Maddy is getting the best of care here at Duke. All of the doctors and nurses we've met so far have been wonderful. They care soooo much about the children and what's best for them. Duke is huge and amazing and the cafeteria food is great unlike most hospitals.
We've survived the first week in North Carolina despite the car accident and severely cold weather. Yesterday's high was 37 degrees - but clear and the snow is almost all gone. They're forecasting an ice storm on Monday - YIPPEE!
We want to thank Rick Guard so much for making the long drive with Papa Greg to bring us our car. He left his wonderful wife GiGi Rhonda and a house full of family - and the newest addition....Little Ricky.
Because so many of you have asked to help financially, an account for donations has been set up through Arrowhead Credit Union called "Miracle for Maddy Fund." This account is set up at the main branch located at 421 North Sierra Way, San Bernardino. Their mailing address is: P.O. Box 735, San Bernardino, CA 92402-0735. The donation process is as follows: You may make a donation in person by walking into the branch or mailing a check to Arrowhead Credit Union. Make the check payable to Miracle for Maddy Fund, Account # 75727145....Or if you prefer to transfer or wire a donation from your account to the Miracle for Maddy Fund, go to your bank, tell them you want to transfer or wire a donation...you will use the bank routing # 3222-8260-3 and Account # 75727145. Your bank will know the procedure for doing this process.
Once again, we send heartfelt LOVE and APPRECIATION for all the love and support you've given us...blood donations, words of encouragement, gifts for Maddy and us, your messages in Maddy's website guestbook and your prayers to our Father on High.
Please continue to pray for John Alvino, Jr. who suffers from Orbital Cellulitis and for Melissa Valdez who suffers from a variety of health problems, one of which is tumors.
Also pray for all children with these dreadful diseases - you don't realize how many there are until you're in the midst of all of this.
Richelle, Joe, Ethan and "The Little Queen"
Tuesday, January 27, 2004 7:59 PM CST
We made it to Duke for our first appointment today - through snow and ice. We were fairly nervous driving in this weather after the accident Sunday.
We met with Jayne our case manager and nurse Bridgette - they are so nice and helpful. Then we went to the hospital for tests. We ran into Dora the rescuer and ate brunch with her. Dora is a natural with children and it didn't take her long to win Ethan over (that's a feat in itself!) Ethan did so well with his blood tests today - we are so proud of him. Tomorrow, Maddy has an eye appt and we will meet with Dr. Kurtzberg. Thursday and Friday, there will be more tests and a tour. Some tests that were scheduled Monday, were rescheduled due to the weather.
Greg and Rick arrived safely this morning - made great time coming across the country (3.25 days). They are really tired and ready for bed - time here is 9:00 pm but their bodies still think its 6:00 p.m. pst. We all went to dinner, including Dora, at Champs - a sports bar type place in the biggest mall I've ever seen.
We're still not in our apartment and being couped up in a hotel room is pretty hard with two kids. The weather has prevented the moving company from getting the furniture into the apt. Hopefully, we'll move tomorrow.....cause Joey may be crazy if we don't. We drove to the complex today and its really nice. Our apt is a 2 bedroom, 2 bath (1,200 sq.ft.) with a garage. They are less than 2 years old - I think our section is a little newer. It's a little farther from the hospital than our hotel room, but very nice....we're really anxious to move.
Because so many of you have asked to help financially, an account for donations has been set up through Arrowhead Credit Union called "Miracle for Maddy Fund." This account is set up at the main branch located at 421 North Sierra Way, San Bernardino. Their mailing address is: P.O. Box 735, San Bernardino, CA 92402-0735. The donation process is as follows: You may make a donation in person by walking into the branch or mailing a check to Arrowhead Credit Union. Make the check payable to Miracle for Maddy Fund, Account # 75727145....Or if you prefer to transfer or wire a donation from your account to the Miracle for Maddy Fund, go to your bank, tell them you want to transfer or wire a donation...you will use the bank routing # 3222-8260-3 and Account # 75727145. Your bank will know the procedure for doing this process.
Once again, we send heartfelt LOVE and APPRECIATION for all the love and support you've given us...blood donations, words of encouragement, gifts for Maddy and us, your messages in Maddy's website guestbook and your prayers to our Father on High.
Please continue to pray for John Alvino, Jr. who suffers from Orbital Cellulitis. He will be scheduled for surgery soon. Orbital Cellulitis is an acute infection of the tissues immediately surrounding the eyes. His mother Carrie, tells us that this is pressing against his brain right now, but hasn't moved into the eye sockets. Pray that the surgeon is knowledgeable and skilled. Pray for strength for the Alvinos. Carrie Alvino works with Nana Carol and has graciously donated blood and platelets for Maddy over the past year.
Also pray for Melissa Valdez who suffers from a variety of health problems, one of which is tumors. Olga Valdez works with Nana Carol as well.
Richelle, Joe, Ethan and "The Queen"
Keep us in your prayers!
Sunday, January 25, 2004 6:43 PM CST
Welcome to North Carolina!
We arrived in Raleigh-Durham at about 5:50 pm est on Saturday, January 24th. The weather was clear and about 50-60 degrees...not too different than California. Then we awoke to snow this morning and lots of it!
We ventured out to find our way to Duke and breakfast. We were driving really slow (about 10 mph) because of the snow. We were almost back to the hotel and what happens....a guy speeding in a pickup truck lost control and hit us. Joe tried to avoid it, but the guy slide right into us doing about 40 mph and he was going uphill! He jumped out of the car, said "sorry" and took off running. It totalled the van....airbags deployed and scared the hell out of us. Our welcoming committee was the police and a fire truck.
Joe hit his head on the window but is fine. The kids were strapped in their seats and are fine. I got whiplash and my neck & back is really sore. Nana Carol has a major bruise across the left side of her chest and breast - seatbelt imprint, bruised right arm, stiff neck and shoulder.
I called Mike Mitchum and he called Dora (the physical therapist) who came to our rescue and picked us up and took us back to the hotel room. Then she took Richelle grocery shopping since almost all the stores and restaurants were closing due to snow. Then the toilet in the hotel room overflowed - YIKES!
We're trying to adjust to the time change - which is hard...it's 3:40 pm your time, but 6:40 here right now. Tomorrow morning we start the workups for the kids at Duke and attend an orientation tour of the hospital. We sign for the transplant on 2/9/04.
It's incredibly beautiful here though and the people are really friendly.
Because so many of you have asked to help financially, an account for donations has been set up through Arrowhead Credit Union called "Miracle for Maddy Fund." This account is set up at the main branch located at 421 North Sierra Way, San Bernardino. Their mailing address is: P.O. Box 735, San Bernardino, CA 92402-0735. The donation process is as follows: You may make a donation in person by walking into the branch or mailing a check to Arrowhead Credit Union. Make the check payable to Miracle for Maddy Fund, Account # 75727145....Or if you prefer to transfer or wire a donation from your account to the Miracle for Maddy Fund, go to your bank, tell them you want to transfer or wire a donation...you will use the bank routing # 3222-8260-3 and Account # 75727145. Your bank will know the procedure for doing this process.
Once again, we send heartfelt LOVE and APPRECIATION for all the love and support you've given us...blood donations, words of encouragement, gifts for Maddy and us, your messages in Maddy's website guestbook and your prayers to our Father on High.
Please continue to pray for John Alvino, Jr. who suffers from Orbital Cellulitis. He will be scheduled for surgery soon. Orbital Cellulitis is an acute infection of the tissues immediately surrounding the eyes. His mother Carrie, tells us that this is pressing against his brain right now, but hasn't moved into the eye sockets. Pray that the surgeon is knowledgeable and skilled. Pray for strength for the Alvinos. Carrie Alvino works with Nana Carol and has graciously donated blood and platelets for Maddy over the past year.
Also pray for Melissa Valdez who suffers from a variety of health problems, one of which is tumors. Olga Valdez works with Nana Carol as well.
Richelle, Joe, Ethan and "The Queen"
Keep us in your prayers!
Friday, January 23, 2004 9:16 PM CST
Once we were approved, everything was set in motion and flew by really fast. We're leaving tomorrow (Saturday, January 24th) for Duke University, North Carolina. WOW!
Corporate Angels were unable to transport us, so Southwest Airlines comped our tickets and Nana Carol's boss gave her a ticket.....what a blessing! Papa Greg and his friend Rick Guard will leave tomorrow as well, to begin the drive to bring our truck and things we couldn't put on the plane to us. A lady Papa Greg works with gave him tickets for him and Rick to fly back home....another blessing!
We have a completely furnished two bedroom, two bath apartment w/garage waiting for us - coordinated by Duke U staff. We should be able to move in late Monday. A wonderful nurse at Duke offered us the use of her car until ours arrived....another blessing!
We will surely miss all of our friends and family. The love, support and generosity all of you have shown has been so overwhelming it's hard to EXPRESS OUR GRATITUDE AS WORDS SURELY AREN'T ENOUGH.
Because so many of you have asked to help financially, an account for donations has been set up through Arrowhead Credit Union called "Miracle for Maddy Fund." This account is set up at the main branch located at 421 North Sierra Way, San Bernardino. Their mailing address is: P.O. Box 735, San Bernardino, CA 92402-0735. The donation process is as follows: You may make a donation in person by walking into the branch or mailing a check to Arrowhead Credit Union. Make the check payable to Miracle for Maddy Fund, Account # 75727145....Or if you prefer to transfer or wire a donation from your account to the Miracle for Maddy Fund, go to your bank, tell them you want to transfer or wire a donation...you will use the bank routing # 3222-8260-3 and Account # 75727145. Your bank will know the procedure for doing this process.
Once again, we send heartfelt LOVE and APPRECIATION for all the love and support you've given us...blood donations, words of encouragement, gifts for Maddy and us, your messages in Maddy's website guestbook and your prayers to our Father on High.
Please continue to pray for John Alvino, Jr. who suffers from Orbital Cellulitis. He will be scheduled for surgery soon. Orbital Cellulitis is an acute infection of the tissues immediately surrounding the eyes. His mother Carrie, tells us that this is pressing against his brain right now, but hasn't moved into the eye sockets. Pray that the surgeon is knowledgeable and skilled. Pray for strength for the Alvinos. Carrie Alvino works with Nana Carol and has graciously donated blood and platelets for Maddy over the past year.
Also pray for Melissa Valdez who suffers from a variety of health problems, one of which is tumors. Olga Valdez works with Nana Carol as well.
Richelle, Joe, Ethan and "The Queen"
Thursday, January 22, 2004 10:55 AM CST
PRAISE TO GOD - FOR HE IS GOOD!
Yesterday, we received the news "Pack your bags - you're going to Duke." The Independent Medical Review Board determined that the service we desired for Maddy, was medically necessary and overturned Kaiser's original denial.
What a long and stressful process. We bombarded the gates of heaven with our prayers and we prevailed. Thank you all for your continued support and prayers to our Father.
Duke University has accepted Maddy as a patient in the Pediatric Bone Marrow and Stem Cell Transplant Program and is awaiting our arrival.
Corporate Angels have been contacted and will call us today to let us know the soonest flight we can get to North Carolina.(Corporate Angels are private companies that use their corporate jets to transport critically ill children, so they're not exposed to germs on regular airlines).
As soon as we have a departure date....we'll update the website again.
We anticipate being in North Carolina 4-6 months and will update the web page as often as we can.
Because so many of you have asked to help financially, an account for donations has been set up through Arrowhead Credit Union called "Miracle for Maddy Fund." This account is set up at the main branch located at 421 North Sierra Way, San Bernardino. Their mailing address is: P.O. Box 735, San Bernardino, CA 92402-0735. The donation process is as follows: You may make a donation in person by walking into the branch or mailing a check to Arrowhead Credit Union. Make the check payable to Miracle for Maddy Fund, Account # 75727145....Or if you prefer to transfer or wire a donation from your account to the Miracle for Maddy Fund, go to your bank, tell them you want to transfer or wire a donation...you will use the bank routing # 3222-8260-3 and Account # 75727145. Your bank will know the procedure for doing this process.
Once again, we send heartfelt LOVE and APPRECIATION for all the love and support you've given us...blood donations, dinner, a word of encouragement, gifts for Maddy, your messages in Maddy's website guestbook and your prayers to our Father on High.
Please pray for John Alvino, Jr. who suffers from Orbital Cellulitis. He will be scheduled for surgery soon. Orbital Cellulitis is an acute infection of the tissues immediately surrounding the eyes. His mother Carrie, tells us that this is pressing against his brain right now, but hasn't moved into the eye sockets. Pray that the surgeon is knowledgeable and skilled. Pray for strength for the Alvinos. Carrie Alvino works with Nana Carol and has graciously donated blood and platelets for Maddy over the past year.
Also pray for Melissa Valdez who suffers from a variety of health problems, one of which is tumors. Olga Valdez works with Nana Carol as well.
Richelle, Joe, Ethan and "The Queen"
Friday, January 9, 2004 8:40 AM CST
Dear Family and Friends,
Maddy's case is now before the Independent Medical Review Board (State). Yesterday we faxed our application and mailed (overnight) 102 pages of supporting documentation.
It tooks days to write and correlate....many late nights - we thought our minds were about to experience a "melt down" from thinking so much. At one point, Joe was trying to be serious and share a point of view and my mother-in-law (Nana Carol) started laughing and couldn't stop...Joe became irritated and then I started laughing and couldn't stop...which irritated Joe even more. We tried to stop and tell him to go ahead with his idea and then we'd start laughing again...Joe was so irritated with us...and then we looked at him and he started laughing and couldn't stop! This went on for about a half an hour. We decided our brains were mush at that point and to stop for the night. I think God brought the laughter because we have been so full of anxiety lately. It was gooooood!
Maddy will undergo a bone marrow biopsy on Monday, January 12th to determine if she's in remission. If she is and if the IMRB decides in our favor....we could possibly be on our way to Duke University/North Carolina within a week. Corporate Angels will provide the transportation (Maddy cannot be exposed to people on a regular airline) free of charge....what a blessing!
Our son Ethan will be going with us right away, as they will use his bone marrow (with T-Cell Depletion) for Maddy. Nana Carol is coming along to be with Ethan while we're with Maddy. Then Papa Greg & his friend Rick Guard will drive our truck to North Carolina and then fly home.
We anticipate being in North Carolina 4-6 months and will miss all of you very much. We'll update the web page as often as we can.
Because so many of you have asked to help financially, an account for donations has been set up through Arrowhead Credit Union called "Miracle for Maddy Fund." This account is set up at the main branch located at 421 North Sierra Way, San Bernardino. Their mailing address is: P.O. Box 735, San Bernardino, CA 92402-0735. The donation process is as follows: You may make a donation in person by walking into the branch or mailing a check to Arrowhead Credit Union. Make the check payable to Miracle for Maddy Fund, Account # 75727145....Or if you prefer to transfer or wire a donation from your account to the Miracle for Maddy Fund, go to your bank, tell them you want to transfer or wire a donation...you will use the bank routing # 3222-8260-3 and Account # 75727145. Your bank will know the procedure for doing this process.
Keep us in your prayers and ask God to give us strength & wisdom! Also pray God's favor on our behalf. If God is for us, who can be against us!!!
Once again, we send heartfelt LOVE and APPRECIATION for all the love and support you've given us...blood donations, dinner, a word of encouragement, gifts for Maddy, your messages in Maddy's website guestbook and your prayers to our Father on High.
Richelle, Joe, Ethan and "The Queen"
Tuesday, January 6, 2004 9:37 PM CST
Dear Family & Friends:
Joe and I appeared before the Kaiser Expedited Review Board. The panel was made up of 13 people, who do not specialize in oncology or transplant. Two men and eleven women. One of the men leaned back in his chair, with hands behind his head - very uninterested in what we were saying. They gave us a whole 20 minute presentation to plead our case for our daughter's life.
They stated they would review it for 5 days because of the severity of her disease. It appears that 5 days just means hours to Kaiser as they called within 3 hours after our arrival at home to tell us they denied our request for the second time. I really don't know why they decided to hold a second appeal on our behalf because it was obvious their minds were made up long before they heard our plea. Kaiser has denied us a second opinion which we are entitled to basically because they only have ONE transplant specialist on staff (the doctor we're disputing).
Since they do not specialize in oncology or transplant, they relied on information provided by the doctor we are disputing....that was a real unbiased decision! We felt like we'd be kicked in the stomach....sort of like how we felt when Maddy was diagnosed. So now, we are appealing to the State Independent Medical Review Board. We have really done our research and feel that our case is solid and deserves an unbiased opinion. Joe and I get the feeling that Kaiser thinks they are dealing with "young kids" who are stupid and can't think for themselves.
Maddy had blood work today which indicated that she is recovering from her last round of chemotherapy. Now time is definitely of the essence. We only have two weeks at the most to get her into transplant - hence our urgency with the State Medical Board.
Because so many of you have asked to help financially, we set up an account for donations through Arrowhead Credit Union called "Miracle for Maddy Fund." This account is set up at the main branch located at 421 North Sierra Way, San Bernardino. Their mailing address is: P.O. Box 735, San Bernardino, CA 92402-0735. The donation process is as follows: You may make a donation in person by walking into the branch or mailing a check to Arrowhead Credit Union. Make the check payable to Miracle for Maddy Fund, Account # 75727145....Or if you prefer to transfer or wire a donation from your account to the Miracle for Maddy Fund, go to your bank, tell them you want to transfer or wire a donation...you will use the bank routing # 3222-8260-3 and Account # 75727145. Your bank will know the procedure for doing this process.
Keep us in your prayers and ask God to give us strength & wisdom! Also pray God's favor on our behalf. If God is for us, who can be against us!!!
We send heartfelt LOVE and APPRECIATION for all the love and support you've given us...blood donations, bringing us dinner, a friendly voice on the phone with a word of encouragement, your messages in Maddy's website guestbook and your prayers to our Father on High.
Sunday, December 28, 2003 12:27 AM CST
Maddy received blood and platelets on Friday, December 26th. Dr. Horvath decided to let us be in "reverse isolation" at home instead of the hospital. It's taken some pleading on my part to get Dr. Horvath to rely on "mother's intuition." Of course, Joe was extremely thrilled because it would have been his turn at the hospital!
We've been planning our strategy on how to convince the Expedited Review Board to send us to Duke. Ten minutes for a presentation to them isn't a lot of time and we know this is a longshot....we think Kaiser will deny us again, but we have to try! Pray God will intervene on Maddy's behalf.
Because so many of you have asked to help financially, we set up an account for donations through Arrowhead Credit Union called "Miracle for Maddy Fund." This account is set up at the main branch located at 421 North Sierra Way, San Bernardino. Their mailing address is: P.O. Box 735, San Bernardino, CA 92402-0735. The donation process is as follows: You may make a donation in person by walking into the branch or mailing a check to Arrowhead Credit Union. Make the check payable to Miracle for Maddy Fund, Account # 75727145....Or if you prefer to transfer or wire a donation from your account to the Miracle for Maddy Fund, go to your bank, tell them you want to transfer or wire a donation...you will use the bank routing # 3222-8260-3 and Account # 75727145. Your bank will know the procedure for doing this process.
Keep us in your prayers and ask God to give us strength & wisdom!
We send heartfelt LOVE and APPRECIATION for all the love and support you've given us...blood donations, bringing us dinner, a friendly voice on the phone with a word of encouragement, your messages in Maddy's website guestbook and your prayers to our Father on High.
Happy New Year!
Joe, Richelle, Ethan and "the queen"
Friday, December 26, 2003 3:50 PM CST
Yesterday, Maddy experienced her second Christmas. At first she was just too tired to care about opening gifts, so we helped her open gifts from Santa. By the time Nana and Papa arrived, she perked up and was ready to rip off the bows and paper. We recently purchased a digital video camera and are capturing as much on tape as possible.
Today, Maddy returned to the hospital to get platelets and blood. Then she'll return home instead of staying at the hospital for 2 weeks. Normally, she returns to the hospital and goes on neutrapen to build her immune system up. This time, we'll forego the neutrapen and allow her system to build up on its own.
Kaiser Member Services left a voicemail Christmas Eve stating that they are re-opening Maddy's case and will review it for 5 days. We will have the opportunity to address the panel for 10 minutes on Tuesday, December 30th - to plead our case for treatment at Duke University. Please pray extra hard that our presentation will appeal to their better judgement and they'll approve treatment at Duke.
Because so many of you have asked to help financially, we set up an account for donations through Arrowhead Credit Union called "Miracle for Maddy Fund." This account is set up at the main branch located at 421 North Sierra Way, San Bernardino. Their mailing address is: P. O. Box 735, San Bernardino, CA 92402-0735. The donation process works as follows: You may make a donation in person by walking into the branch or mailing a check to Arrowhead Credit Union. Make the check payable to Miracle for Maddy Fund, Account #75727145. Or if you prefer to transfer or wire a donation from your account to the Miracle for Maddy Fund, go to your bank, tell them you want to transfer or wire a donation.... you will use the bank routing # 3222-8260-3 and Account # 75727145. Your bank will know the procedure for doing this process.
Please continue to pray for Maddy and us - we're very weary, but are relying on God our Father to give us strength and wisdom.
"Fear thou not; for I am with thee: be not dismayed;for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness." Isaiah 41:10
We send heartfelt LOVE and APPRECIATION for all the love and support from all of you....blood donations, bringing us dinner, a friendly voice on the phone with a word of encouragement, your messages to our guestbook, and your prayers to our Father on High.
Happy New Year!
Joe, Richelle, Ethan and Maddy
Tuesday, December 23, 2003 1:42 PM CST
Maddy came home from the hospital last night after five (5) days of chemotherapy. She seems to have picked up a cold in the hospital (everyone is sick) and is feeling poorly. But we're really glad to be at home (Nana's house). Joe & Ethan are recovering from colds and we thought staying at Nana and Papa's would be safer for Maddy.
Kaiser's Expedited Review board denied our request to be treated at Duke University. Our next step is to appeal this to the BioEthics Committee after Christmas. Hopefully, they will agree with what our hearts tell us is the best treatment for Maddy and release to Duke. If we're denied again, we'll appeal to the State Medical Board.
Because so many of you have asked to help financially, we set up an account for donations through Arrowhead Credit Union called "Miracle for Maddy Fund." This account is set up at the main branch located at 421 North Sierra Way, San Bernardino. Their mailing address is: P. O. Box 735, San Bernardino, CA 92402-0735. CLARIFICATION OF THE DONATION PROCESS: You may make a donation in person by walking into the branch or mailing a check to Arrowhead Credit Union. Make the check payable to Miracle for Maddy fund, Account # 75727145.
If you prefer to transfer or wire a donation from your account to the Miracle for Maddy Fund, go to your bank, tell them you want to transfer or wire a donation...you will use the bank routing # 3222-8260-3 and Account # 75727145. Your bank will know the procedure for doing this process.
We're looking forward to Christmas at home and then back to the hospital for 2-3 weeks to rebuild Maddy's immune system. Hopefully, by then, we'll have an answer about going to Duke University and will be on our way.
Please continue to pray for Maddy and us - we're very weary. We know God has a plan for Maddy's life and that He is in control. It's just hard not knowing what that plan is.
Please know that we LOVE and APPRECIATE so much all of the love and support from all of you......blood donations, bringing us dinner, a friendly voice on the phone with a word of encouragement, and your prayers to our Father on High.
Have a wonderful Christmas and Happy New Year!
Joe, Richelle, Ethan and Maddy
Tuesday, December 16, 2003 11:35 PM CST
Dear Family & Friends,
Maddy re-entered the hospital today to start chemotherapy for 5 days. Her leukemic blasts are at 20 it's a very aggressive cancer. She's been a little tired and had a tummy ache the past few days which I think may be the cancer.
It's hard adjusting to being in the hospital again. I wasn't here 2 hours and wanted so desperately to be home. We so enjoyed our "normal family life," the last few months. However, Maddy has settled in and watched her favorite movie (Lilo & Stitch) 3 times today.
We met with Kaiser's Dr. Faulk at City of Hope last Friday to no avail. He wants Maddy to be treated at that facility which is a great facility for older children and adults - but they've never treated a child Maddy's age and we don't agree with their protocol. We're still working hard to get Kaiser to release us so we can be treated at Duke University in North Carolina. The east coast is about 7 years ahead of the west coast in medical treatments. Pray that Kaiser will release us quickly so we can schedule our treatment at Duke. Duke will not use radiation on Maddy and have a treatment plan for her that doesn't exist within the Kaiser Hub.
It will probably be at least 4 weeks before we can go.... Maddy will complete 5 days of chemo, it will take about a week for her counts to go down and then about 2-3 weeks to build her up again. Then we can head for North Carolina if all goes well with Kaiser.
Because many of you have asked to help financially, we set up an account for donations through Arrowhead Credit Union called "Miracle for Maddy Fund." This account is set up at the main branch located at 421 North Sierra Way, San Bernardino. Their mailing address is: P. O. Box 735, San Bernardino, CA 92402-0735. There are several ways to make donations and two account numbers to use depending on how you choose to make the donation.
You may make a donation in person by walking into the branch or you may mail a check to Arrowhead Credit Union. Make the check payable to Miracle for Maddy Fund - Account # 75727145.
If you bank with Arrowhead Credit Union, and want to transfer money from your account to the Miracle for Maddy Fund you will do so using Account # 3222-8260-3. If you wire a donation you will use this account number as well.
If you need more information or need to contact us, please email Maddy's Nana Carol at carol.bates@verizon.net. We will try to keep the web page updated on a regular basis.
Remember, God has a plan for Maddy's life and He's in complete control. He gives us strength daily and His love is never failing.
Remember to keep Brandyn Welch in your prayers as he continues to undergo treatment at Kaiser. You may visit his website at www.caringbridge.org/ca/kingbrandyn
Merry Christmas and Happy New Year!
Joe, Richelle, Ethan and Maddy
Sunday, December 7, 2003 12:35 AM CST
Dear Friends,
Maddy underwent her labs/bone marrow test last Thursday, December 4th. It is with a heavy heart that I share our "Maddy" has relapsed and the leukemia is back. On Friday, December 5th, her "tubbies" were re-inserted and a plan of starting Chemo again on Monday, December 8th was discussed. Once again, Dr. Wang did a "superb" job on Maddy....her site is beautiful!
After consulting with Dr. Horvath, we contacted Dr. Kurtzberg at Duke University. Right now Maddy is at 5 eukemic blasts (which is technically considered remission)but knowing how aggressive AML is, Dr. Kurtzberg feels that Maddy needs transplant as soon as possible. So the journey begins this week in an attempt to get Kaiser to authorize a stem cell/cord blood transplant at Duke. Dr. Kurtzberg would like us to be at Duke in two weeks (pray it will happen that fast).
We have so many things to consider going to Duke. We will be there 4 to 6 months. Joe will be taking "family leave" (without pay) which leaves us with the dilemma of how to make our house payment, truck payment and all the other "living expenses" while we are gone, so we don't have to sell our house (which was a consideration - but it's important to keep things familiar for Ethan and Maddy when we return). We're looking into setting up a fund for Maddy through a bank, for those of you who may want to make a donation.
Remember that no matter what we're going through, God has His Hand on this situation and will continue to carry us through every moment of each day as He always has.
Thank you for all your prayers and support - it means more to us than you could possible know. We'll keep you updated as often as we can. If you need more information or need to contact us, please email Maddy's Nana Carol at www.carol.bates@verizon.net.
Happy Holidays to all of you! As Madi Mitchum's daddy would say...."go hug your kids!"
Remember to keep Brandyn Welch in your prayers as he continues to undergo treatment at Kaiser. www.caringbridge.org/ca/kingbrandyn
Merry Christmas Richelle, Joe, Ethan and Maddy
Tuesday, November 4, 2003 9:52 PM CST
Maddy has been home from the hospital since August 24th. She has her monthly visits with Dr. Horvath and all of her favorite nurses and is doing well. She's still in remission and they removed her tubies two weeks ago. She's a free "woman" and can take a "real" bath now. She loves it!
She is eating well and growing every second of every day. She finally has black "fuzz" on her formerly bald head! She is a typical "almost two year old" fighting with her brother and insisting on her way.
We're starting to get used to the "normal" life and its wonderful. Maddy was "Tinkerbell" for the October festivities and brother was Peter Pan. Cousin Caden was Captain Hook and Caden's cousin Angela was TigerLily. They had such fun!
We thank God for getting us through the last 7 months and pray he continues to heal Maddy. Thank you for your prayers and support. We promise not to wait soooo long before our next update.
Pray that Maddy remains in remission and doesn't develop any secondary cancers. We covet your love and prayers.
Also pray for Brandyn Welch as he's fighting to enter remission so he can finally get a transplant. www.caringbridge.org/ca/kingbrandyn
Pray too for the Mitchum family. Princess Madi went home to be with her Lord on October 28, 2003. www.caringbridge/nc/princessmadison
Tuesday, September 16, 2003 10:34 PM CDT
The results are in from Maddy's last bone marrow test and as Dr. Horvath says......"everything looks beautiful!"
She is still in remission and is doing well. God has blessed us abundantly and nothing is more precious than your children.
More than anyone, God knows what it is like to have a child hurting and to lose a child (Jesus is His son whom He gave that we may have life more abundantly) and He is with you during every hurt, trial or tribulation you encounter. Just lean on Him and He'll carry you through it all!
Keep praying for:
Madison Mitchum: www.caringbridge.org/nc/princessmadison Brandyn Welch: www:caringbridge.org/ca/kingbrandyn Briana at Kaiser - who will be undergoing radiation therapy at Kaiser/Sunset/Los Angeles for bone cancer. She is 13 years old.
Tuesday, September 9, 2003 7:33 PM CDT
Maddy had a bone marrow test last Friday 9/5 and everything looked good. They sent it to Los Angeles for more indepth testing and we'll have the results in about a week.
Maddy loves being outside and able to go places. She's been spending lots of time with cousin Caden and brother Ethan and enjoys playing with them so much.
Thanks to all for your unselfish love and support over the last 5 months. Those who gave blood, cooked us dinner, and prayed for us - thank you!
Please continue to pray Maddy remains in remission.
Also continue to pray for Madison Mitchum and Brandyn Welch. www.caringbridge.org/nc/princessmadison www.caringbridge.org/ca/kingbrandyn
Wednesday, August 27, 2003 11:00 AM CDT
GREAT NEWS! Maddy came home from the hospital last Saturday night, August 23rd. Her ANC count skyrocketed and she was released. She has a checkup today and a bone marrow test next week and then two week visits for a month and then bone marrow tests every two months.
Thank all of you for your prayers, blood/platelete donations, and your support. It has meant so much to all of us over the last 5 months....words cannot even begin to express our gratitude.
We've met many wonderful people over the past few months in the hospital and will continue to pray for them and their children.
A BIG THANKS to all of Maddy nurses who have just been extra special and Dr. Horvath who goes the extra mile to treat "her" kids.
Continue to pray for Brandyn Welch and Maddy Mitchum. www.caringbridge.org/ca/kingbrandyn www.caringbridge.org/nc/princessmadison
Joe, Richelle, Ethan and Maddy Bates
Tuesday, August 19, 2003 10:27 PM CDT
Maddy returned to the hospital last Friday, August 15th as her immune system had crashed after the last round of chemo. She's in fine spirits and doing well. Her appetite has not dimenished. We're just counting the days til we're home - maybe 2-3 weeks. Keeping mom busy entertaining her in the hospital bed. Never a dull moment...I think she's getting the terrible two's early.
Keep praying for:
Brandyn Welch and his parents: www.caringbridge.org/ca/kingbrandyn
Madison Mitchum: www.caringbridge.org/nc/princessmadison
Friday, August 15, 2003 9:25 PM CDT
Maddy re-entered the hospital today because she's neutropenic and Dr. Horvath wants to have in the hospital during this time.
Brandyn Welch, a 5 year old diagnosed with "ALL" needs your prayers. He has pneumonia and chemotherapy doesn't seem to be working. His parents are grief stricken and need our love, support and prayers as well.
Brandyn's webpage is: www.caringbridge.org/ca/kingbrandyn Please send your love and prayers to him through journal entries at this site.
Brandyn, Steve and Diane - we love you and are praying for his healing.
Monday, August 11, 2003 4:30 PM CDT
Maddy underwent her last round of chemotherapy last week. She did well with the exception of a reaction to the chemo on Thursday/Friday in which her head turned beet red. Dr. Horvath allowed her to come home on Saturday evening to spend a few days before her immune system crashes.
Maddy had a check up this morning and Dr. Horvath is allowing her to stay home during her neutropenic period (no immune system) - coming in for blood and platelets as needed. This is a real blessing for mommie - who will finally be able to get a good night's sleep. It will also be refreshing for Daddy and Ethan to have mommie and Maddy home.
Maddy is very active - walking has given her such freedom...there's no stopping her. Maddy and Ethan have some very tender moments but fight with one another daily (typical sibling rivalry).
Thanks to all for your prayers and support - it means so much to us and I know God hears and answers our petitions.
Friday, August 1, 2003 11:20 AM CDT
Well, Maddy has been home for 3 weeks (the longest time home since her diagnosis) and has been enjoying trips to the beach and spending time with mommy, daddy and brother, Ethan.
Dr. Horvath called to say that indepth testing of her bone marrow test (last week) shows no leukemia present. However, she'll re-enter the hospital on Monday, August 4th for her final round of chemotherapy. And we pray there will be NO RELAPSE.
Thanks for all of your prayers, support and blood donations - it means more to us than mere words can express. We are very blessed to have such wonderful family, friends and even people we don't know who have prayed for Maddy, donated blood/platelettes and brought us meals. A good support group makes life a lot easier when going through something traumatic. God Bless you all.
Tuesday, July 22, 2003 12:35 AM CDT
Yesterday, Maddy had her bone marrow test and Praise the Lord - she's still in remission! She will re-enter the hospital next Monday, July 28th for (what we hope will be)her final round of chemotherapy. Maddy is doing well.
She started walking this last week and there's no stopping her now. She waddles all over the house and chases her brother. It will hard next week to keep her confined to the hospital bed.
Many of you have asked about donating to Maddy's medical fund. This is such a kind,loving and generous gesture and is soooo appreciated and Maddy thanks you in advance. You may send your donation to:
Joe and Richelle Bates 3363 N. Arrowhead Avenue San Bernardino, California 92405.
Continue to keep Maddy in your prayers - God does work miracles!
Tuesday, July 22, 2003 12:35 AM CDT
Yesterday, Maddy had her bone marrow test and Praise the Lord - she's still in remission! She will re-enter the hospital next Monday, July 28th for (what we hope will be)her final round of chemotherapy. Maddy is doing well.
She started walking this last week and there's no stopping her now. She waddles all over the house and chases her brother. It will hard next week to keep her confined to the hospital bed.
Many of you have asked about donating to Maddy's medical fund. This is such a kind,loving and generous gesture and is soooo appreciated and Maddy thanks you in advance. You may send your donation to:
Joe and Richelle Bates 3363 N. Arrowhead Avenue San Bernardino, California 92405.
Continue to keep Maddy in your prayers - God does work miracles!
Wednesday, July 16,2003
well, We just finished our fourth round of cemo and man our we sick of long stays at hotel kaiser!Maddy is doing wonderful and is back to her self as always,following brother around and getting into as much trouble as she possibly can. Two days after we got out of the hospital she fell and bumped her head causing a big goose egg to appear,I,m sure you all can guess where we had to stay that night!Maddy recieved blood and platlets and we were out of there!Now were just enjoying each other while being at home until we go back next week.This is our last round if everything goes according to plan.THANK YOU ALL FOR YOUR PRAYERS AND SUPPORT!
