team michael

Dear Friends,

Michael had multiple scans and a bone marrow biopsy last week. The good news is that his bone marrow is clear at this time. The bad news is that a new area of cancer has appeared behind his left eye socket. Because there is progressive disease at the end of standard treatment for neuroblastoma, this new growth is very concerning. So after consulting with multiple oncologists and hospitals, the Malones have decided to take Michael to Houston for treatment at M.D. Anderson Cancer Center. He will have ten rounds of radiation to the area behind his left eye. Alison plans to take Michael to Houston on the 20th for his first week of treatment, then come home for the weekend, and then Michael’s sister, Emory, will join them for the second week of treatment. The Malones should be back in Dallas on Friday, April 1st. The plan after radiation is to wait a couple of weeks and scan Michael again to check the progress of the new growth. At that point, the Malones will make decisions about next steps for Michael’s treatment. I will keep you all updated as new information becomes available.

Please keep the Malones in your prayers. Please pray for them as they are separated as a family for a short time and for Michael as he undergoes new treatment. Please also pray for wisdom and guidance for the doctors and Mike and Alison as they continue to make decisions on treatment.

Feel free to call or email the Malones during Michael’s treatment, with the understanding that sometimes it is difficult for Alison and Mike to return calls or emails right away. If you have any questions or would like to check the progress of treatment, please do not hesitate to contact me at this [email protected] or 214.683.8511.

With Hope,

Evelyn Costolo

Happy New Year to all of you. Thank you so much for all of the wonderful holiday wishes. Michael did have a terrific Christmas and New Year’s. He got home from the hospital after a 12 day treatment late at night on December 22nd, and spent the next few days recovering. He seemed to bounce back more quickly this time. Clearly, his motivation was very high. We had some friends and family over for a special communion on the 23rd, and Christmas morning was spectacular. Michael was full of energy and our entire family was deeply appreciative of the moments we shared that day.

We spent New Year’s in Galveston with the Costolos, and had a very relaxing week. All four kids really enjoyed bringing in the new year together, and it was a nice break from our hospital routine.

Michael’s MIBG scan that was scheduled for December got moved to this week. He had it on Wednesday, and we just received the full report. The good news is that the cancer in his liver and the cancer in his abdomen appear to be gone. Of course, we cannot confirm that until we get the full set of scans (MRI, CT Scan, Bone Density Scan) in March. However, this MIBG scan tends to be the most detailed, and so it is very likely that for now, that cancer is not active. (Pause. Do a little dance.)

There is still active cancer showing up on this scan in his skull. Unfortunately, this cancer does not appear to have shrunk over the last few months. But we still have two rounds of his antibody treatment left. Since this cancer is in his bones, the Bone Density Scan will tell us more in March.

As I have said many, many times over the past year, relapse is common in children with High Risk Stage 4 Neuroblastoma, so we will remain on high alert for the next two or three years. However, this news about his liver and abdomen is a blessing, and worth celebrating. We are thrilled to share the news with all of you.

We check Michael into the hospital this Sunday for about a week for his antibody treatment, and hopefully he will return to school the following week.

Thank you again for all of your love and support. This has certainly been a surreal and difficult journey over the last 13 months, and it is far from over. But we feel uplifted by each of you, and we are so grateful.

With love and hope,

The Malones

It is the day before Thanksgiving, and even in the midst of Michael’s illness, we are very thankful for many things. His doctors were able to move the November treatment schedule around so that he could check into the hospital last Friday instead of Monday. So we were able to take Michael home late last night instead of this Friday. We are thrilled to be able to have him home for Thanksgiving.

Michael had another bone marrow biopsy last Wednesday, and we found out Monday that his marrow is currently cleared of cancer. This is amazing news, and we are thrilled. Of course, this does not mean that Michael does not have any active cancer. There are still areas of concern – primarily in his skull, liver and abdomen. And this type of cancer has a high relapse rate, so Michael’s battle is far from over. However, today we are celebrating. And we want to share that with all of you. Your prayers have been working.

Michael is scheduled to have another MIBG scan next week, and that will tell us more about the progress of the cancer in his skull, liver and abdomen. Then he will continue his clinical trial antibody treatment until the end of February. At that point he will have another round of scans and we will go from there.

Many of you have written to me asking about this trial, which primarily consists of infusions for 1-2 weeks each month for six months, and the effects it has on Michael. If you want to google it for details, it’s called a Phase III Randomized Study of Chimeric Antibody 14.18 (or just Ch14.18).

Regarding the side effects, this process has been pretty brutal – much worse than chemotherapy in our case. Every child is different. Michael responded fairly well to chemotherapy, and his side effects were less than most. In this case, he is one of the few that comes home with ongoing side effects. The nerve pain is extensive, and requires the maximum amount of morphine possible. So after 5-10 days of high levels of morphine, it’s quite an adjustment to his system afterwards. Some of the medicine he is taking also causes severe mood swings and emotional outbursts that are very confusing to him. He feels out of control, and keeps asking why he can’t stop crying. Michael has always been a very tender, kind child, so this has been particularly difficult for him. Luckily, he is not able to remember all of it.

The biggest side effect has been a decrease in his vision. Michael woke up one day unable to see anything clearly for about four feet in front of him. He could not read, write, draw, or even eat properly. He could watch a television from far away, but everything else was a blur. We had a brief scare when his doctor feared optic nerve damage or even a tumor behind his eyes, but a quick CT scan eliminated that possibility. After talking to the director of the clinical trial, we have learned that severe vision loss does occur in a few cases. And it is likely to be gone by this spring, a few months after the infusions are over. We did get him some glasses, which help, but obviously, this has been very difficult for Michael.

We wanted to keep you updated on everything Michael has been going through the last few months, but please know that as we enter this holiday weekend, with all five of our children gathered around our Thanksgiving table, we are thankful. The last 11 months have taught us a great deal, and we treasure our family and our friends more than ever before.

Thank you for your unending support, your love and your prayers. We will spend our weekend giving thanks for all of you.

With love and hope,

The Malones

Michael’s numbers were high enough toward the end of July, so the doctors cleared the family to spend the last 12 days at their family beach house in Galveston. They had a wonderful trip. It was a magical time for Michael and by far the best family vacation the Malones have had in a long time. They would like to thank all of their dear friends from Dallas, Houston and Austin who made the trip to the beach to spend time with them and make it so very special.

Michael is felling well, though he gets tired occasionally, as his numbers have not fully recovered from transplant. Overall, he is full of laughter and energy and fun as always!

Alison and Mike had good, productive meetings with both Texas Children’s Hospital and M.D. Anderson in Houston with pediatric oncologists who specialize in neuroblastoma to discuss the next step in Michael’s treatment. They will be meeting with radiation oncologists on Monday and Tuesday this coming week at both hospitals and have sent Michael’s latest scans to a neuroblastoma specialist in Michigan. The next phase of treatment will depend on these discussions and input, but the family feels fairly certain that Michael will begin radiation at M.D. Anderson in Houston as soon as possible. Beginning Monday, August 9th, Michael and Alison plan to be in Houston for three weeks, and will hopefully be able to come home most weekends.

As always, Alison has access to email and will have her cell phone with her while she is traveling back and forth from Dallas to Houston. Please also feel free to contact me at 214.683.8511 or this email address at any time – it is my pleasure to help the family with communications.

PRAYER REQUEST: Guidance for the family and doctors as they make decisions for treatment. Encouragement for Alison and Michael as they will be traveling and away from Emmy and Mike over the next three weeks. Strength for Michael as he undergoes radiation. Healing and a cure!

Blessings,

Evelyn Costolo

Hello, everyone. Michael had his latest set of scans last week, and Mike and I got preliminary results late Thursday night, and we received more details on Friday. The residual disease is still present. The tumors in Michael’s skull have decreased slightly, and the tumors in the liver show virtually no shrinkage. Needless to say, this was not the news we were hoping to hear. The chemotherapy he received during his transplant was the highest dose he has received yet, so there was a chance that it could have decreased the remaining cancer more significantly. But unfortunately, that did not happen.

The good news is that, unlike five years ago, we have options left. We are exploring radiation, although in Michael’s case, it may not be the best solution. We are still planning to enroll him in a phase 3 clinical trial for six months beginning around the first of September where he will receive antibody infusions for five days each month, which will increase his chances of not relapsing by about 20%. And there are other options as well, which I can explain later, depending on what we decide to do.

We are taking a family road trip to my parents’ beach house in Galveston, which will be a welcome change of scenery for all of us. While we are there, Mike and I are meeting with two neuroblastoma specialists in Houston – one at Texas Children’s Hospital, and one at M.D. Anderson. These consultations, along with other research, will help guide us as we enter this next phase of Michael’s treatment.

Some other good news is that his blood counts have stabilized since his transplant, and his immune system has finally turned the corner. So on Friday we got the green light to ease Michael back into his old routine. He can go to restaurants, movies, and even have a few play dates. But we still have to take it slowly, and be very careful about our surroundings. Jennie and I took Michael to Toy Story 3 yesterday to celebrate his freedom, and he had a terrific time. With lots of antibacterial wipes, of course.

We will be gone from July 28th through August 8th. We hope all of you are enjoying your summer, and thank you for all of the ongoing emails, phone calls, letters, cards and meals. It has helped us more than you can imagine.

With love and hope,

Alison & Mike

Hello, everyone. The last few weeks have been somewhat of a fog while Mike and I have been passing each other on the tollway each day driving back and forth between Children’s Hospital and our home to cover both of our children. But today we have some very good news. We were able to take Michael home yesterday after just 23 days in the hospital for his stem cell (bone marrow) transplant. The normal time spent in the hospital for this process is 30-50 days, so this is very exciting and uplifting news for our family. Michael has made a stellar recovery, and as I type this, he is on his 12th hour of sleep upstairs.

The first couple of weeks were very difficult. He developed a bacterial growth that often leads to infection, and the doctors expressed concern and put him on four powerful antibiotics until the day before we left. Mike kept trying to explain to me that this was not a life threatening infection at any point, but when the doctor called and told me he had some concerning news, I’m not sure that I heard anything he said after that.

Then the worst part of the transplant process began, which was the mouth sores. They lasted a little over a week, but the worst of it was probably about three days. And I must say that, in all of my life, I have never seen a child suffer that much up close. I know that children suffer tremendously all over the world each day, but this was horrific, unspeakable pain. He could not talk, eat, drink, or get out of bed to use the bathroom. It was a very dark and frightening time for Michael, and for all of us. But it passed, and he rebounded like a champ, as always.

He also experienced many of the normal side effects of his chemotherapy and transplant, like nausea, vomiting, diarrhea, and body aches. But if a visitor or volunteer walked into the room, he perked up and was eager to play a board game or work on a craft.

And speaking of arts and crafts, thank you so much to all of you who sent so many fun projects for Michael. We used them every day at the hospital, and we now have enough at home to last us through Christmas. I could open up a preschool with everything we have now!

Thank you, also, for all of the meals. I don’t know what we would have done without that help. We barely had time to sleep or shower, much less prepare meals.

As for the future, we now enter a period of 30-60 days of quarantine. The doctors have asked that Michael, Emmy and myself not go to restaurants, grocery stores, or anywhere for that matter until they feel his immune system is ready to endure a potential illness. Mike will, of course, have to continue to work. If it were up to me, he would have a tube of sanitizer wrapped around his body that would spray a shower of antibacterial liquid every time someone approached him. But I suppose that might be offensive to some of his clients.

We are settling back in at home, and if he does as well in quarantine as he did during transplant, we may be out and about in a month or so.

The next step for Michael is radiation, which will probably begin in 3-4 weeks. Then he will enter a clinical trial to help prevent relapse. That is scheduled to begin in October, and will last six months. He will be in the hospital for five days every 3-4 weeks during that period.

Needless to say, we have a long road ahead, and we will not know how many residual tumors he has until we get the results of his next set of scans, which will be in 2-3 weeks. But today, we know that his transplant was successful, and for that, we celebrate. We celebrate our son, who is courageous, kind and relentless in his fight against this cruel disease. We celebrate being his parents. We celebrate our other four children, who have been the reason we have been able to endure this nightmare with Michael. And we celebrate our friends and our family, who have surrounded us with unending love and support.

We wish you a wonderful fourth of July.

With love and hope,

Alison & Mike

Hello, everyone, and thank you for all of the kind, inspiring emails. Michael has completed his first week of the transplant process, including four days of conditioning chemotherapy, and is doing well. His surgery went as expected. He experienced some soreness and discomfort, but rebounded quickly. He has had both nausea and mouth sore pain, which we knew would happen. Unfortunately, it will get much, much worse before it gets better. However, he is on powerful anti-nausea meds and morphine to help ease his suffering. He is, as always, positive and eager to follow the doctors’ instructions so that he can recover as soon as possible.

His weekly routine consists of mouth care and breathing exercises five times per day, and during the week he gets visits from physical therapists who play games with him, a massage therapist, and musical therapy. Saturdays and Sundays are long and uneventful, and we do the best we can to entertain him. Soon his energy level will drop, and the days will be more about pain management. But as of now, he can still play games and occasionally they let us unhook him long enough to enjoy a nice bath or throw a ball around in the hallway of the transplant unit.

We are always looking for new arts and crafts, so send along your ideas. He has painted a bird house, several piggy banks, and lots of pictures, and he loves the mosaic color-by-sticker kits.

His actual transplant is Thursday, and then the waiting period begins. Please pray for his pain to be minimized as much as possible, and that the next several weeks go by quickly for Michael.

I hope you are all doing well, and that you have a wonderful Father’s Day this weekend.

Much love to you,

Alison

Hello, everyone, and Happy Memorial Day. Michael has had a wonderful weekend with friends and family, and his preschool, Meadowbrook, has arranged for him to attend the first week of their summer camp before he checks into the hospital for his bone marrow transplant on Tuesday, June 8th.  We continue to be so grateful to everyone at Meadowbrook for their support and love for Michael.

Last week Michael endured a grueling five day schedule of multiple scans and procedures in preparation for his transplant. He was under general anesthesia four times, sometimes for up to four hours, and had a bone marrow biopsy on Friday. However, we were able to schedule several of these procedures around his last week of school celebrations. He was especially thrilled to go to the end of school party splash day and spend the afternoon with all of his friends and teachers.

We will get the results of all of these scans and procedures on Wednesday, but do not anticipate any significant change from the last round of tests. Michael has been responding to chemotherapy up to this point, and he has not had enough of it yet to cause his body to become immune to it. But obviously, if there is anything to report on Wednesday, we will let you know.

Michael will be in the hospital for his bone marrow transplant for anywhere from 4-6 weeks. He will have surgery on June 8th to install a central line with two outlets for treatment, in addition to his port which he has had since December. Then he will have seven days of conditioning chemotherapy, which is the highest dose of chemotherapy that can be given to a child. It will wipe out his immune system and cause severe discomfort and pain.  Michael will not be able to keep food down after the chemotherapy, and his doctors have told us that he will probably only be fed intravenously for the duration of his treatment. He will be covered in painful mouth sores, and there is little they can do to ease this discomfort.  And overall, he will feel like he has a very achy, feverish flu for a little over a month. After the conditioning chemotherapy, he will receive his stem cells, and then we wait for his body to heal.

The main concerns for Michael during his transplant are infection and high fever. Catching a common cold can be life threatening during this process, so we will be very cautious about visitors this summer.  After he returns home safe and sound, hopefully by the end of July, he will be in isolation until early October. His doctors feel it will take that amount of time to ensure that his immune system is strong enough. Our daughter and I will be fairly isolated as well since I am the primary caretaker. So we will have to come up with some very creative ways to entertain Michael (and Emmy) that don’t involve leaving the house. For those of you who know me well, you know that I am so not the arts and crafts mom. But I plan to give Holly Hobby a run for her money.

After Michael recovers from his transplant, he will enter a clinical trial that helps prevent relapse. We will share more information about that with you when we get closer to the treatment.

On a lighter note, some families from Meadowbrook put together a fundraiser to raise money for neuroblastoma clinical trials, and it was a huge success. When they first approached me about this in March, they said they hoped to raise somewhere between $20,000 and $40,000. A month later they felt hopeful that they would reach $50,000. Last week they called to tell me that the gross figure to date is $183,000. Unbelievable. We are incredibly humbled by the kindness and generosity of our friends from Meadowbrook, from our neighborhood and from all over the country who contributed to this special evening.  These trials will benefit Michael and so many other children with high risk neuroblastoma.

As always, thank you for all of the notes, cards, emails and meals. They provide us a great deal of comfort, and remind us that we are surrounded by so much love and support. Take care, and have a wonderful summer.

With love and hope,

Alison