team michael – Page 2

September 6, 2012

September 6, 2012
Event, Update

Dear Friends and Family,

We would like to thank everyone for the incredible outpouring of support for our family over the past few months. We will never forget the kindness, compassion, generosity and love offered to our family during this tragic time. Michael was a brave and beautiful child, who I think would ask all of us to find our own bravery now. We have found strength in these difficult times by knowing we are not alone in our loss, and that Michael’s memory will be strong among the hundreds, perhaps thousands of people he touched in his seven short years. Michael was our God given gift that we had the honor and privilege to share for those seven years, and we miss him every second of every day.

We have had many requests for the remembrances from Michael’s service , so I have attached my remarks for those of you who did not attend.

We also wanted to let you know about a couple of upcoming events where we plan to honor Michael.

This Sunday, September 9th, one of Michael’s kindergarten classmates, Cade Roseman, is hosting a tennis carnival for children and adults at the JCC from 3pm – 5pm. There will be kids and adult tennis games with prizes, food, music and more. If you would like to join us, you can go to www.wokc.org and click on the Kobe Roseman Tennis Carnival link on the right side of the home page. All of the proceeds will be donated to the Michael Malone Fund at Wipe Out Kids Cancer.

On Saturday, September 22nd, Wipe Out Kids Cancer is having their annual 5K/1K Run, and we have started a Team Michael group. As many of you may recall, Michael ran the entire 1K last year without stopping. That was an incredible day for him, and he talked about it often. If you would like to sign up to run/walk with us, or if you would like to donate, you can go to www.wokc.org and click on the Oktoberfest Run link on the right side of the home page. Be sure to register with “Team Michael Malone,” and if you would like a Team Michael t-shirt, just let us know.

Also, for those of you in our neighborhood, we are having a long overdue garage sale at our house on Saturday, September 29th, and we are donating all proceeds to the Michael Malone Fund at Wipe Out Kids Cancer. If you have anything you would like to donate to the sale, feel free to contact Alison. Or feel free to stop by that day. I will attach the information sheet in case you want to pass it along to your friends, schools, churches, etc.

The day that we found out Michael’s cancer had relapsed beyond being able to treat him, Alison scheduled a family portrait. Alana McIntyre has been photographing our family since Alison was pregnant with Michael, and she came to our home in May and chronicled what was to be our last family photo session. She sent us a slideshow of those photos, and I thought some of you might enjoy it. The link is below.
www.1000-words.com/ss/am-pics-052012

Again, we are eternally grateful to all of you for your support, your prayers and your love.
-Mike and Alison

June 23, 2012

June 23, 2012
Update

Dear Friends,

It is with a heavy heart I send the following message from Alison, Mike, and Emmy Malone: Michael’s 2-1/2 year battle with cancer ended late this morning. Michael died peacefully, without fear and without pain. He was surrounded by the love of his family and the support of his huge community of people from here and across the country. We will never be able to adequately thank all of you for making Michael’s journey one that none of us will forget. He inspired everyone he touched, and although his body finally gave out, know his spirit never did. As recently as Friday he was plotting his comeback – he had plans for camps, school, Rangers games and going to the beach in the Bahamas. And to “The Biggest Loser” Ranch as part of his “Make a Wish” request.

The funeral will held on Tuesday, June 26th at 10:00 am at St. Michael and All Angels in Dallas.

The family will receive friends Tuesday, June 26th from 4:00-6:00 pm at the home of Susan and Dean McSherry: 3417 University Boulevard, Dallas, 75205. Parking is available on the north side of University Boulevard.

If you are traveling to Dallas for the service, a special rate has been set up at the Park Cities Hilton. Please refer to Michael Malone Bereavement when making your reservation or use the code MMB if booking online. The Sparkman Hillcrest funeral home has also made available a bereavement travel program open 7 days a week from 8:00 am to 10:00 pm: 1.800.224.4177. Please refer to Michael Malone or the Malone Family when using this service.

In lieu of flowers, donations in honor of Michael Malone can be made to The Michael K. Malone Fund at Wipe Out Kids Cancer or to St. Michael and All Angels Church.

What a blessing for all of us to have known Michael Malone.

Evelyn Costolo
214.683.8511

June 20, 2012

June 20, 2012
Update

Dear Friends,

Please see the below email from the Malone family:

The Malone family – including Michael – decided to come home today. His chest tube was removed yesterday, and he tolerated the procedure well enough to be given the OK to leave the hospital. His catheter was also removed, so Michael is going home with oxygen and his port accessed so that hospice can administer IV medication.

He still has fluid in his left lung, but given the circumstances, inserting a new tube has its own set of risks and would have only lengthened his stay, without any definitive promise of improvement. The remainder of his care will now be through hospice.

Michael did have one uplifting moment today. To better understand the moment, here is an excerpt from a speech that Mike Malone gave to their church and to the Baylor School of Nursing:

One of Michael’s favorite things is the reality TV show The Biggest Loser. At first, we thought it was about the teams and the competition. The teams are designated by colors, which Michael loves, and they have intense competitions and challenges, which he enjoys immensely. And the trainers are his heroes. But over time, we have come to believe it is because Michael feels like he and the contestants are kindred spirits. The contestants on the show are morbidly overweight when they arrive. They are in fact sick. Yet by agreeing to be on the show, they have decided they want to get better. They take charge of their own destinies. They rely on each other. They form communities. The contestants are on a journey to get better. I think, as a cancer patient, Michael understands their pain and their suffering. Like him, they are grinding it out. He doesn’t want them to relapse. He wants their weight, like his cancer, to melt away.

And from Alison…
So Michael’s initial Make A Wish was to fly to The Biggest Loser Ranch and work out with the trainers and the contestants, and especially to meet his personal favorite, Bob Harper. Make A Wish worked very hard to try to make this happen for Michael, but there simply wasn’t time. So today, Bob Harper surprised Michael with a phone call right before he left the hospital. For those of us that were there, I can tell you that it was absolutely magical. And as his mother, after several nights in a row sleeping next to my son and watching him in excruciating pain and discomfort, it was uplifting to see his face when he heard Bob’s voice. Michael has very few giggles left, and I haven’t seen him smile since Wednesday. So if you’re reading this, thank you, Bob. You made Michael very happy today. We join Michael in his admiration for you – a trainer, a motivator, a fighter, a healer. Keep fighting the good fight, and if your contestants ever get weary and want to give up, tell them about Michael.

Thank you to everyone for your continued prayers and support. There are no words to describe our gratitude.

We will continue to update you and to post updates on Michael’s website.

God bless you all,

Alison, Mike, Michael and Emory

Please feel free to contact me with any questions.

Blessings,

Evelyn Costolo
214.683.8511

June 17, 2012

June 17, 2012
Update

Dear Friends,

UPDATE: Michael was admitted to ICU at Cook’s Children’s on Thursday because he was having difficulty breathing and had a mass on his left shoulder. He had just returned from a two day trip to the University of California San Francisco Medical Center, where he was being evaluated for potential MIBG treatment. Unfortunately, a CT scan and chest x-ray on Friday revealed that Michael had fluid in his chest cavity and numerous new tumors covering his body that had invaded his kidney and liver. A chest tube was installed to relieve the pressure on his heart and lungs. His doctors believe that he has a very limited amount of time, possibly less than a week, before his organs begin to fail. His family hopes to move him home by Monday to spend the remainder of his time surrounded by family and friends in the comfort of his home.

Michael has fought a brave fight over the past two and a half years. He has shown great courage and has been an inspiration to all who have had the blessing of knowing him. Find hope in his strength, peace in his perseverance, and encouragement in the fact that he has never been far from God.

As information becomes available, I will send out new updates. Please pray for Alison, Mike and Emory during this very difficult time. Please pray for comfort and pain management for Michael. Also, pray for strength and peace for the entire family.

Blessings,

Evelyn Costolo
214.683.8511

May 31, 2012

May 31, 2012
Update

Dear Friends,

UPDATE: May was a full month for Michael and his family filled with some wonderful moments. Michael received visits from such famous athletes as Troy Aikman and Michael Young. They each visited the Malone home and spent time with Michael, signing items and visiting with the family.

Last week, Michael graduated from Meadowbrook Kindergarten in a beautiful ceremony. What an accomplishment and special moment for the family.

Michael also had three Friday afternoon parties in his front yard with friends and family. These events included pizza, hamburgers, a Marble Slab ice cream bar, bounce houses and water slides. Not a bad way to spend May! The most exciting Friday party was on May 11th when Michael was visited by the local FBI, Homeland Security, and Dallas/University Park/Highland Park police officers. The visit included a helicopter fly-by and was covered by all of the major local news stations. Please see the following link from the home page of the Diplomatic Security Service: state.gov/m/ds/.

Thank you to all of the friends who graciously donated and supported the May Friday parties. And thank you to all of you who set up special events for Michael, like the visit from the Highland Park cheerleaders, the picture with the Dallas Mavericks trophy and going to the Rangers batting practice. The Malones are extremely grateful for your generosity and your thoughtfulness, and they will treasure these memories with Michael.

Michael finished up radiation on his left eye orbit last week. He began radiation on his spine this week and will complete this round on June 4th. Radiation is being done to treat the pain and symptoms he is experiencing from the three tumors. Michael will be scanned on June 8th and 18th, at which time the family and Michael’s doctors will determine the next steps in treating his pain.

Michael turns 7 on June 7th!! The family will be spending it together, allowing Michael to plan his special day.

Michael is on several medications for pain, including three heavy/class two narcotics. These medications can sometimes cause extreme agitation and mood swings, so Michael has good days and bad days. Therefore, the family is limiting Michael’s play dates at this time. It is very difficult to predict whether he can have visitors until one or two hours before the play date. Thank you for understanding.

Thank you to all of you who have signed up to bring meals. There are truly no words to express how thankful the family is for the support. These meals have been a big help – relieving them of one more thing to think about. Thank you. If you were unable to sign up in time, please send me an email for our back up list. There may be some days not listed that the family needs dinner delivered.

The Malones find great strength in the notes, cards, and emails sent. Please continue to send your thoughts. They may not be able to reply, but please know your support is giving them strength to move forward each day. Visitors from both in and out of town are welcome, with the understanding that plans may have to be rescheduled at the last minute.

Please keep the following in your prayers: prayers for pain management, for the decisions about the next treatment plan in order to keep him comfortable, for the family unit as they work to support Michael and one another this summer.

Blessings,
Evelyn Costolo
214.683.8511

May 9, 2012

May 9, 2012
Update

Dear Friends,

Many of you have asked about the meal calendar for the Malone family. It has been extended. Please see below.

1 – now through May 25
HELPER LOGON
===================================
The HELPER logon is used by family and friends that would like to sign-up to help a loved one.

To access Alison & Mike Malone’s personal CareCalendar site, visit http://www.carecalendar.org/logon/106872 and enter the following information in the appropriate spaces:

CALENDAR ID : 106872
SECURITY CODE : 6881

#2 – May 27 through August 31
HELPER LOGON
===================================
The HELPER logon is used by family and friends that would like to sign-up to help a loved one.

To access Alison & Mike Malone’s personal CareCalendar site, visit http://www.carecalendar.org/logon/111165and enter the following information in the appropriate spaces:

CALENDAR ID : 111165
SECURITY CODE : 3983

These meals are a huge help. If you sign up for a day and cannot make it happen, please just give me a call at 214.683.8511 and I will get dinner covered.

Michael was featured on the channel 8 evening news this week with his teacher, Lesley Armstrong. Please check it out! http://www.wfaa.com/news/education/Teacher-appeals-for-rare-stuffed-animal-for-student-with-cancer-150511845.html Michael began experiencing significant pain a few weeks ago, so the doctor recently began oral chemo and radiation to treat his painful symptoms. He continues to be treated at Cook Children’s in Fort Worth and for the moment, everything is out patient.

Thanks to the generosity of some neighborhood families, last Friday was “Water Slide Day.” A rather large blow up water slide was installed in front of Michael’s house where, for a couple of hours, Michael was able to forget all about cancer.

The day before, thanks to the Lynch family, All-Star Michael Young of the Texas Rangers came by to offer his support (see attached photos). Young had given Michael a game bat and glove, and Michael is headed to a Rangers game next week where he hopes to eat as many hot dogs as possible.

Alison and Mike have made the very difficult decision not to discuss the state of Michael’s cancer with him. We ask you respect their decision when discussing this with your children. They feel strongly that Michael needs to be at peace during these next few months.

Please continue to keep the family in your prayers. Please pray for pain management for Michael and strength for Alison and Mike.

Thank you for your support
Evelyn Costolo
214.683.8511

April 28, 2012

April 28, 2012
Update

Dear Friends,

Update: The results of Michael’s recent surgery and chemo were not as good as hoped for. Michael’s cancer has returned at the sites of his surgeries and a new spot has emerged as well. Yesterday’s MRI confirmed that all are growing rapidly and no longer responding to treatment. The family had hoped to try and arrest the cancer with MIBG treatment – a high dose radiation protocol that requires the patient to be isolated in a lead lined room for 4-5 days with very limited exposure to caregivers and family members. Because of the advanced state of his cancer, and the risk to Michael and to his caregivers if something went wrong, the decision was made not to proceed.

It is with a very heavy heart that after a courageous two and a half year battle I tell you that Michael is in the end stages of his disease. He now has a matter of months left. The family has been told to expect perhaps another 2 months where he can manage some semblance of the life of a little boy. However there is no real way to predict the progression of his cancer.

Michael began experiencing significant pain in his left eye and extreme nausea on Wednesday and was admitted to Cook Children’s yesterday after the MRI to begin the process of pain management. They are giving him the strongest oral pain medication possible, and hoping to send him home some time today. The Malones are meeting with Hospice next week to begin the process so Michael can be at home this summer.

Kelley Schadt has extended the meal calendar for the family through August. If you would like to participate, here are the details:

To access Alison & Mike Malone’s personal CareCalendar site, visit http://www.carecalendar.org/logon/106872 and enter the following information in the appropriate spaces:

CALENDAR ID: 106872
SECURITY CODE: 6881

The meals have been extremely helpful for the family and they thank all of you for the support.

Alison and Mike are carefully planning Michael’s activities over the next two months. Alison and a few of her friends will be setting up a calendar and coordinating play dates for Michael during the month of May. They will be focusing on Michael seeing his friends and enjoying his favorite things.

The family cannot fully express their deep appreciate for your continued love, support, and assistance during this difficult journey. Thank you. Please keep the family very close to your hearts and pray for God’s peace and strength. Please pray for pain management for Michael and wisdom for the doctors as they carry him through the next few months.

If I may answer any questions, please do not hesitate to call me.

Many Thanks,
Evelyn Costolo
214.683.8511

April 18, 2012

April 18, 2012
Update

Dear Friends,

UPDATE: Michael was scheduled to begin MIBG this week. However, it has been delayed due to a national drug shortage. It will now be from April 30 – May 7. Alison will take both children on the 30th and Mike will join them on May 4th.

Michael had another round of high dose chemotherapy in an attempt to keep the cancer at bay while waiting to begin MIBG treatment.

Scans were last week – CT scans, MRIs, MIBG scan and bone marrow biopsy. The good news is that Michael’s bone marrow is negative. The bad news is that there are currently three areas where they can see active cancer growth – the same left eye socket, the same T2/T3 area of the spine, and an area in the lower back. The radiologist who analyzes the scans in detail has not met with Michael’s oncologist, so we do not have specifics yet. We do know that these three areas have grown quickly since his last scans in mid-February.

The plan as of today is to move ahead with MIBG as scheduled. However, Michael’s oncologist is concerned because he cannot be treated for six weeks after MIBG, and the rapid growth of the active disease might require something additional in terms of treatment. Will know more later this week.

Please keep the family in your prayers. We need to pray for the doctors and Alison and Mike as they make decisions regarding Michael’s treatment. Please also pray for their trip to and from Michigan, for the family while they support Michael during MIBG, and for success with the treatment.

Thank you all for your continued, unwavering support.

In Hope,
Evelyn Costolo
214.683.8511

March 19, 2012

March 12, 2012
Update

Dear Friends,

UPDATE: Michael had chemo from last Thursday through today. He has had a very difficult time and has been nauseated and throwing up since Thursday night. His doctor said he should be feeling better by Wednesday. However, this morning he woke up at 6am and was thrilled to be able to go back to school for a couple of hours before chemo. He still felt pretty sick, but was so excited that he pushed through the discomfort for a bit and was able to enjoy his morning.

Michael had about five days at home before chemo began, and it was filled with wonderful friends, play dates and some much needed family time. The Malones wanted me to give special thanks to Greg Nieberding for Michael’s welcome home sign, and for getting up early in the cold weather and putting it up! As you can see, they used it again for his welcome back to school!

The MIBG initial consult in Michigan is March 26th-27th, and the treatment will be April 15th-24th, including travel. Alison is taking both children, and Mike will join them towards the end of the trip.

The family meal calendar has been extended until May 25th. The Malones thank you for all of the wonderful meals. Since leaving the hospital, they have been traveling back and forth between Dallas and Ft. Worth and Grapevine for chemo, doctor appointments, and labs, which has been taxing on their schedules. The meals have been an enormous help – many thanks. To access the Malones’ personal CareCalendar site, please visit http://www.carecalendar.org/logon/106872 and enter the following information in the appropriate spaces:
CALENDAR ID: 106872
SECURITY CODE: 6881

If you have questions about the meal calendar, please email Kelley Schadt at kmschadt@containerstore.com.

The Malones asked me to thank you for continuing to eat at Jersey Mikes during the month of March in support of Wipe Out Kids’ Cancer in DFW ($0.25 of every regular sub and $0.50 of every large goes to fight pediatric cancer). Wednesday, March 28th is the final day of giving and everyone who makes a minimum $2 donation to Wipe Out Kids’ Cancer receives a free sub sandwich. Thank you for supporting this fundraiser.

Also, many, many thanks to all of the generous donations to the Neuroblastoma 5K Run on March 31st. As of today, Team Michael is in a strong third place position, but did actually hold first place for almost a week – thanks to all of you! Michael is thrilled. Special thanks to Jones Day for holding a “Wear Jeans to Work” fundraiser in Michael’s honor and donating over $1,500 to the 5K!

For those of you who want to meet up with the Malones on the day of the 5K before the run/walk, please feel free to either email Alison or show up at their house the morning of the 31st at 6:30am to carpool and caravan to Ft. Worth. Again, thank you for supporting this event.

And finally, Alison asked me to thank all of their friends from all over Dallas – from school, from church, from the neighborhood, some from as far back as college, for helping the Malones during their month long stay in the hospital. As most of you know, their families do not live in Dallas. So they have relied heavily on their friends and neighbors to carpool, pick up mail, drop off laundry, run errands, bring food, watch Emory, and sometimes help with Michael at the hospital. The Malones are incredibly grateful to all of you for becoming their Dallas family. They could not have done it without every one of you. And many thanks to their out of town friends and family who flew in from all over the country to spend time with Alison, Mike, Michael and Emory during Michael’s surgeries and his recovery.

PRAYERS: Please be in steadfast prayer over MIBG treatment. We need strong results, clearing Michael’s cancer and healing him. Please pray for the doctors and staff who will administer the treatment, for the family as they travel, for Alison and Mike as they watch Michael go through the treatment and experience some initial physical separation, and most of all for Michael – strength, courage, peace, and healing. This is a very important step in his treatment and his body needs to respond well.

In Hope,
Evelyn Costolo
214.683.8511

March 8, 2012

March 8, 2012
Update

Dear Friends and Family,

After 29 days in the hospital, it looks like Michael is finally going home tomorrow. His blood counts were slow to rise, but jumped up on Wednesday morning. So we were able to retrieve stem cells Wednesday and today. This is in preparation for MIBG therapy, which we will probably start in early to mid April in Michigan (earliest date is probably April 9th).

Michael’s surgeries were successful. His doctors are estimating that we got about 95% of the spinal tumor and about 90% of the left eye orbit tumor. If they had removed 100% of both, he would have almost certainly come out of this with some amount of paralysis and vision loss. So they saved the spinal cord and optic nerve, knowing that Michael is about to undergo aggressive non-surgical treatment.

While we wait to begin MIBG, Michael is scheduled for chemotherapy March 15-19.

Michael is recovering well, and is in good spirits now that he is going home. He has truly enjoyed every note, email, video and gift he has received over the past month. And Mike and I thank you for all of the meals. Our family has not been under the same roof for four weeks, and we have been trading places every few days at the hospital. There has been little time for grocery shopping or cooking, so the meals have been an enormous help.

We are very excited to let you know that Team Michael is in third place in the Neuroblastoma 5K Run on March 31st. There is not a lot to do at the hospital, so every morning Michael checks the website to see where we are. We started in 11th place, then slowly climbed to the number 3 spot – thanks to you! So thank you!! I will attach a paper form to fill out and mail if you would like to donate or participate in the run. Or you can go to the website, which is http://nbwalk.org/events/team.aspx?teamid=99.

Another exciting opportunity that helps a lot of children fight neuroblastoma is an event that Wipe Out Kids Cancer is doing with Jersey Mike’s during the entire month of March. Some of you may remember this from last year. Anyone who eats at Jersey Mike’s this month is donating to pediatric cancer. They are giving a portion of all sales in Dallas to Wipe Out Kids Cancer. So if you live in Dallas, please try to eat there this month! Whenever you can! 🙂

So many of you have asked how Michael has been getting through these surgeries, the chemotherapy, and the multiple procedures he has had this month. There are many answers to that question, all of them centered around family, friends, faith, and a powerful determination to live. But here are a couple of examples.

I would like to tell you a wonderful story about Michael’s soccer team from last year. They are the Tiger Sharks from the Park Cities YMCA, led by Steven and Katrina Bradford. Michael was devastated that he missed his opening soccer game last week, and the Bradfords have bent over backwards to make him feel part of the team. They asked for some Team Michael t-shirts, wore them to the first game over their uniforms, made a video for Michael, and even wore them for their team photo that Michael had to miss this week (photo attached). It has given him an extraordinary amount of motivation.

The other thing that makes Michael want to get up every morning and continue this painful, cruel and daunting battle is his school community at Meadowbrook. They have been supporting Michael every moment that we have been in the hospital – staff and students driving almost an hour to visit numerous times, setting up a fairy calendar so he gets gifts and messages every day, and like his soccer team, making Michael feel that he has not lost his connection to his school and his friends. His teacher Lesley Armstrong has visited so often that she may have a reserved parking spot in her name by now; she was sent straight from God to our son.

So while Michael has been very lonely, he has also learned what it means to be part of a loyal and nurturing community of friends, a team that fights for you, and a family that loves you more than life itself.

With love and hope,
Alison, Mike, Michael and Emory