Monthly Archives: February 2012

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