team michael

Dear Friends,

UPDATE: Michael successfully completed a long surgery on Thursday to remove the tumor in his left orbital area. Surgery went as well as could be expected, and lasted five hours. The procedure required the removal of his skull from mid head to the eyebrow; the incision went from ear to ear. They were able to remove the vast majority of the solid tumor. The good news was that the tumor had not invaded the dura matter, the protective casing of the brain. It had not penetrated the protective tissue of the eye or the optic nerve. They did not have to remove the orbital bones, although there was some damage to those areas. However, the hope is that it can be treated with additional chemo (which began this past week) and MIBG therapy, a targeted radiation isotope strategy that finds metabolically active sites of the cancer and attacks them at a molecular level.

Michael spent one night in ICU, and was moved back to the oncology floor around 6pm Friday night. He has received two transfusions to restore his blood counts as a result of the chemo earlier this week. He experienced a great deal of pain after surgery, but is feeling better every day.

Michael will have surgery on Wednesday to place a central line in him in order to retrieve stem cells to be used in later treatments. We had hoped the surgery would be on Monday, but due to his counts being very low, he needs time for them to recover before stem cell retrieval.

Tentative plans over the next two weeks are as follows. He will probably go home by the end of next weekend. He will recover at home for about a week and begin chemotherapy the week of March 12th, spring break. Then MIBG will be in April at either CHOP in Philadelphia or at University of Michigan. The hope is to send him to school on the days in between therapies, when he is up to it.

Michael is starting to have visitors, but the Malones are taking this process very slowly.

Mike’s birthday is today!! They will be spending his birthday together as a family at the hospital with cake and balloons picked out by Michael.

Alison and Mike asked me to remind everyone to sign up for the Neuroblastoma 1K/5K run on March 31st. The link to sign up for Team Michael is http://nbwalk.org/events/team.aspx?teamid=99.

Please pray for a speedy recovery and managed pain. Please also pray for Michael’s spirits – he hates not being at school and misses his friends. Please pray over the anxiety of a third surgery in two weeks. Pray for healing!!

In Hope,
Evelyn Costolo
214.683.8511

Dear Friends and Family,

First, we would like to thank you for all of the wonderful emails, video messages, cards, gifts and meals that so many of you have sent to Michael and to our family. Michael has really enjoyed hearing from everyone. He is doing as well as can be expected, given the severity of his surgeries. Yesterday he sat up in bed, and today he took his first step. He is resistant to movement, but we are taking it one day at a time.

We met with Michael’s oncologist today, and got the plan for the next few weeks. The doctors believe Michael is not strong enough to have his next surgery over the next few days. So the surgery is now scheduled for Thursday, February 23rd at 11:30am. Since that is almost a week away, Michael is going to have high dose chemotherapy for five days beginning this evening. A few days after the surgery on his left eye orbit, the plan is to have surgery to place a central line in Michael (similar to a port, but there are three tubes, and they are outside of the body instead of under the skin). Then his stem cells will be collected and he will continue to recover for the rest of that week. The tentative plan is to have our consult for MIBG therapy the week of March 5th, and possibly begin that therapy the week of March 12th. The specific type of MIBG that we are considering is only done at UCSF, so we will probably be in San Francisco for that treatment. Then the assumption is that he will need to have a stem cell replacement following MIBG therapy.

The next month will be very difficult for Michael – physically and mentally. But he feels the comfort and the love surrounding him right now, and will continue to draw strength from all of you.

Thank you again for all of your support. There is no doubt that this is a frightening, uncertain time for our family. But we have never been closer, never had more purpose, and never loved one another more than we do right now.

With love and hope,

Alison, Mike, Michael and Emory

Dear Friends,

UPDATE: Michael went into surgery at 6:30am, and the two surgeries lasted about seven hours. The first surgeon removed a large portion of the cancer outside of Michael’s spine. The second surgeon was not able to remove all of the cancer in and surrounding the spine, but he did get the majority of it. Unfortunately, the remaining cancer was liquid and attached to the nerve. The ideal neuroblastoma tumor would be very hard, so you could pop it out like a golf ball. That was not the case with Michael’s remaining tumor. The surgeon could not remove any more because it would damage the nerve, and cause some loss of motor function. Also, the consistency of the tumor means that it is metabolically active and will continue to spread unless they do further treatment, such as high dose chemotherapy and MIBG therapy. But this surgery bought them a little time to let Michael recover before they begin more treatment.

Michael is now in ICU, where he will be until he stabilizes a little more. He has two lines in his hands, a catheter, and a drainage tube on his left side. As soon as he is strong enough, they will go into this left eye orbit and attempt to remove as much of that cancer as possible. Unfortunately, this means having to make an incision on his scalp, and peel his skin back to get into his left eye. And they expect that the cancer there is similar to the spinal tumor. However, there is no way to know anything with certainty until they operate.

Michael was surrounded by many loving friends and family members today and all weekend. His kindergarten classmates and teachers made many, many trips to the hospital, and the Malones especially want to thank their out of town family and friends for traveling so far to sit with Alison and Mike while they waited for results today. Today was a very difficult day, but the family felt the support of you all. We received calls and messages from around the country. THANK YOU! No act is unappreciated.

The Malones also want to thank everyone for the outpouring of cards and video messages. Michael loves them! His kindergarten class pitched in and bought Michael a new iPad and set up an email address for him. So he spent a good part of the weekend watching video messages from friends and family, both near and far away. It was an incredible gesture. And for those of you who would like to send Michael a video or an email, his new email address (chosen by his teacher!) is presidentmalone@me.com (Mr. Class President!).

Something else that is motivating Michael to get better right now is an upcoming run/walk for neuroblastoma in Ft. Worth. The Malones have set up a Team Michael Malone group, and would love for anyone and everyone to join them in the run (or walk!), or donate to the event, which helps fund neuroblastoma research. Here is the link: http://www.nbwalk.org/2012Walk/teammichaelmalone For those of you who are interested in helping out with meals, here is the link for the meal calendar. If you have any questions about that, you can email Kelley Schadt at kelleym@containerstore.com.

To access Alison & Mike Malone’s personal CareCalendar site, visit http://www.carecalendar.org/logon/102939and enter the following information in the appropriate spaces:

CALENDAR ID: 102939
SECURITY CODE : 9622

Lastly, due to the enormous amount of pain Michael is experiencing from surgery, the family is requesting limited visitation and no children at this time. Michael is in ICU and it is important he is able to heal quickly and prepare for the next surgery on his left eye orbit. Please coordinate your visits with either the family or me.

PRAYER REQUETS: Please pray for a speedy recovery for Michael in preparation for the next surgery. Please pray that the remaining cancer on the spine will not spread quickly. Pray for the tumor in the left eye orbit, that it too will not spread this week during recovery and for the surgeons as they prepare for the next surgery. Continue to lift the family up and ask for peace, comfort, strength and wisdom as they make decisions for Michael and move forward in his treatment. Praise the Lord he did not have to have a fusion of the spine today and that there was no breathing tube when he woke up.

In Hope,
Evelyn Costolo
214.683.8511

Dear Friends,

UPDATE: Michael was admitted to Cook Children’s in Fort Worth last night. He started experiencing pain yesterday due to the tumor compression on the spine. It was best to admit him to manage the pain and swelling. The MRI results started coming back around 4:00 and showed growth of the tumors and significant swelling around the spine. They started him on steroids last night to reduce the swelling in order to perform surgery. The surgeons would like to hold off on surgery until Monday, but we are waiting to see if he needs to have surgery sooner. It depends on how he responds to the steroids, and whether or not his symptoms increase. Alison and Mike are meeting with the surgeons at 3:15 to discuss all options and the appropriate timeline.

When we have a definite answer on surgery, I will send out another update. But as of now, it is still scheduled for Monday.

Many of you have contacted me asking what you can do to help the family. THANK YOU! I have spoken with Alison and the most difficult part of this situation for Michael is being separated from his friends. He would love to receive cards, photos, homemade items, video messages, texts or emails from his little buddies. This makes him so happy. These items are easy to take to the hospital and surround him in his room. You may email them to Alison or Mike, or send them to the Malone’s home: 3905 Hanover Dallas 75225. And for those of you who have children who are close to Michael, please feel free to visit him over the weekend. He is in good spirits today, and would love to see his friends between now and Monday morning. Michael will be in ICU dealing with a difficult recovery next week. I know many of you will want to visit after the surgery. When he is able to except visitors, I will let you know. We are also working on a meal plan, but first need to get the surgery schedule. I will send out the meal calendar as soon as we have the details set.

They also need lots of prayers – pray for Michael’s pain management, wisdom for the doctors/surgeons, quick healing, successful removal of the cancer, comfort and peace and wisdom for Alison and Mike, and comfort for little Emory.

The Malone family feels your continued support – thank you.

In Hope,

Evelyn Costolo

Dear Friends,

UPDATE: Mike and Alison received Michael’s final test results Tuesday afternoon from Cook Children’s in Fort Worth. The existing tumors in his upper spine and left eye have doubled in size over last 13 days, which is extremely alarming. The tumor in his spine has wrapped around his spine in a dangerous position. The tumor in his eye is on the border of his brain, and the doctors feel it will penetrate into the brain very soon if left untreated.

New tumors were discovered in the CT scan. One is in his middle spine, which has spread into his bones. One is in his left leg and there may be one small spot in his liver.

Michael’s oncologist called this an urgent situation, and feels that chemotherapy or radiation will take too long to have any effect on this rapidly spreading cancer. This means that the MIBG treatment in San Francisco and the 3F8 treatment at Sloan Kettering in NY are on hold. They have elected to do surgery on his upper spine, his middle spine, and his eye.

Michael will have an MRI today detailing the areas of concern, and the Malones will meet with the three surgeons on Friday. Alison and Mike will check Michael into Cook Children’s in Fort Worth on Sunday, and the first two surgeries in the spine will be on Monday. After Michael has had time to recover from this surgery, they will operate on his left eye. Clearly, there are many risks with these surgeries – paralysis and loss of vision. There is no way to predict the outcome until after the surgeries.

Michael will be in the hospital for two to four weeks, and Alison and Mike will take shifts each day so that someone is always with him. We do not know when he can have visitors yet, but we will let you know.

We are working on a meal calendar and will send out to the Dallas friends shortly.

Please keep the family in your prayers. Please also pray for wisdom and direction for the surgeons. Your support and friendship is what keeps the family going and is deeply appreciated. I will continue to send out updates when available. However, please do not hesitate to call me if you would like to check on the family.

In Hope,

Evelyn Costolo

Dear Friends,

Michael received several MRI and CT scans today at Texas Children’s in Houston where he has been participating in a clinical trial since November. The family received initial results this afternoon and the tests revealed a new tumor in the T2-T3 area of the spine. This area had cleared as of the last scans in November so this is considered another relapse situation. The tumor had never been above 2 centimeters. This new tumor is 3cm x 1cm. Due to this new active tumor, Michael no longer qualifies to continue in the clinical trial at Texas Children’s. The tumor on the left eye socket is also still present.

The family has been in contact with Michael’s main oncologist at Cook Children’s in Fort Worth as well as doctors at MD Anderson, Children’s Medical Center, Texas Children’s, and Sloan Kettering in NYC. There are no decisions on the next step in treatment as of this evening. Michael will return to Dallas tomorrow and undergo more tests at Cook next week.

When there is more information, I will send out another update. Please keep the family in your prayers as well as the team of doctors working on his case.

In Hope,

Evelyn E. Costolo
214.683.8511

Dear Friends,

UPDATE: Michael will be starting a new clinical trial called ATOMIC, which stands for Allogeneic Tumor Cell Vaccination with Oral Metronomic Cytoxan. This trial is designed specifically for patients with high-risk neuroblastoma. The trial is at Texas Children’s Hospital in Houston, which has some of the top neuroblastoma doctors in the country. Alison and the kids will be in Houston for a few days this week for scans and labs and then begin the vaccination treatment the week of November 21st. After the initial treatment, Michael will be treated in Houston two days every two weeks until April. After the first four treatments, they will do scans to monitor his progress.

Once this trial is complete next spring, if Michael does not clear, the Malones will consider the 3F8 treatment at Sloan Kettering in NYC. This trial can last anywhere from six months to two years.

The family will be in Dallas for Thanksgiving. They will travel to Houston for Christmas to be with friends and family. Michael is doing well and in good spirits. Thanks to a dear friend, he got to go to the World Series with his dad. He has recently taken up a career in politics as he has just been elected his Kindergarten Class President! Emory celebrated her 3rd birthday this month and both kids are looking forward to the holidays.

Thank you all for your support and prayers. Please pray for the family as they enter this new clinical trial and travel to Houston over the next five months. If you have any questions, please do not hesitate to call on me.

We will continue to post updates on Michael’s website, www.team-michael.org.

Blessings,

Evelyn E. Costolo
214.683.8511

Dear Friends and Family,

Michael had his scans last week in Fort Worth at Cook Children’s Hospital.

His MIBG scan continues to show that he does not have any MIBG avid cancer at this time.

His CT scans and MRIs showed that the cancer in his left eye socket has shrunk and is barely noticeable on the scans.  The cancer in his spine (T2/T3 area) has shrunk a tiny bit, but not significantly.

Certainly things are moving in the right direction, but until he clears, we have to consider more aggressive therapy in the near future.  We are currently consulting with several neuroblastoma specialists about vaccine therapies, immune therapies, and various other clinical trials.

He will continue to have chemotherapy every third week until we make a decision about next steps.  His next set of scans will probably be right after the holidays.

Michael is in good spirits and is doing well.  He does not like missing school and other activities due to his frequent treatment.  But his teachers, coaches and friends have gone above and beyond to help him through it.

Scans are always hard on Michael, but he did attempt to do this round without sedation.  Michael has been under general anesthesia more than 70 times over the last 22 months, so he was ready to try staying awake.  He sat in the CT scan machine for 30 minutes without moving, the MRI machine for 90 minutes without moving, and the MIBG machine for 80 minutes without moving. In two of the machines, his head was locked down on both sides, and he wore two levels of helmets to hold his face still.  Then the machines circled him constantly, coming less than an inch from his face and making very loud noises.  It was an unbelievable achievement.

As the technicians pointed out, he did what many adults cannot do. Michael said the reason he could stay so still was that he kept thinking he may get done in time for the last hour of school or in time to make his soccer game. His new name in Y Guides is Brave Bear, which is very fitting.  He got to go to a Rangers game, which he loved.  And he ran the Wipe Out Kids Cancer Fun Run 1K without stopping or slowing down once.  Mike and I never knew how fast we could run a mile until we had to chase our son the entire way in fear of losing him in the crowd.  He outran all of us.

As always, we are deeply grateful for the love and support of our friends and family.  We appreciate every kind word and every prayer.

With love and hope,

Alison & Mike

Dear Friends,

Michael went through scans last week and the results showed that the tumors are still present on the left eye orbit and upper spine.  They did show a slight decrease in size.  There were no signs of new cancer. Michael has been going through chemo treatments this summer and will do one more round in Dallas next week.  He will then go to Houston to M.D. Anderson for radiation on the spinal tumor from Aug. 7-26.  Alison plans to travel to Houston with both Michael and Emory for the three weeks of treatment, and they will try to come home to Dallas for the weekends. Michael received radiation on the left eye orbit last spring so they will not radiate the eye area at this time.  After consulting over the past two months with Sloan Kettering in NYC, CMC in Dallas, Cook in Fort Worth, and TX Children’s in Houston, this is the consensus for treatment.  All agree surgery is not an option at this time, but may be in the future.  The chemo and radiation combination are showing slow, small decreases in the cancer.  Upon coming home from Houston at the end of August, Michael will continue chemo treatments every 3-4 weeks.  They will scan again in the fall.  If there is not significant progress over the next few months, more aggressive treatments will be considered at that time.

Please keep the family in your prayers as they will be living apart for much of August.  Thank you so much for your continued support to the Malone family.

Blessings,

Evelyn Costolo

Dear Friends and Family,

Michael had all of his scans and his bone marrow biopsy last week at Cook Children’s Hospital in Fort Worth. Their scanning technology is a little more advanced, so we feel more comfortable getting his scans done there from this point forward.

Michael’s Bone scan shows the same cancer around the orbit in his left eye, in the eye socket.

Michael’s CT scan shows the same cancer in the left eye, but slightly smaller. There is also a second spot, a mass on his spine, between the middle and upper spine.

His bone marrow is negative, so currently there is no cancer in the marrow.

In his MIBG scan, there are two spots that are very faint, and they are on his skull and his spine. However, they are so “dimly lit” that they do not qualify as significantly MIBG avid spots. So this is good news, because there is no additional cancer showing up on this scan other than those two iffy areas. This means he does not qualify for MIBG treatment, which is also good.

Since the two new areas of concern that we learned about from the Bone and CT scan (in the eye and spine) are not MIBG avid, they would not respond to MIBG therapy. So if he did have a bunch of MIBG avid cancer, we would have to do MIBG therapy for a month or two, and then also deal with the cancer in the eye orbit and spine separately. Now we can focus solely on the two relapsed cancer sites. We are primarily considering radiation, surgery, and chemotherapy.

Michael began outpatient chemotherapy this week at Children’s, and will finish that up on Saturday. He will have this same chemotherapy for two more cycles over the next two to three months.

We will spend the next couple of weeks talking to pediatric surgeons around the country about whether or not we should operate on the cancer in his spine, and possibly even the area in his left eye. We will also consider radiation. After we complete the three cycles of chemotherapy, we will scan him again, probably some time in August. At that point we will move forward with surgery and/or radiation, and/or continued chemotherapy. Of course, if his cancer has spread by then, we will consider other options as well.

I know these scan results are confusing. The best way I know how to sum it up is to say that we are very happy that his bone marrow is clear and that his MIBG scan is virtually clear. But we are certainly concerned about the fact that Michael has not been able to clear completely after 17 months of treatment, and that he has active cancer in two areas of his body, which are categorized as recurring disease. Michael can only endure so much treatment, and we need him to clear completely in order to be cured.  We do have options left – more than we would have even two years ago. So we will continue to believe that one day our test results will be able to be summarized with just one sentence – that he is cancer free.

Thank you so much for all of your support. For your cards, your emails, your phone calls, and your prayers. We still feel the circle around Michael that is made up of all of you.

With love and hope,

Alison & Mike