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

Dear Friends and Family,

We don't have any big news, but I wanted to give you all an update about Michael, and fill you in on a few things that are going on as well.

We returned from Houston on Friday. Michael had two weeks of radiation treatment at M.D. Anderson. The radiation targeted the cancer that recently recurred in his eye socket. Unlike last summer, he did not have to go under general anesthesia each day. He is now old enough to sit still for these treatments. Due to the location of the radiation, he did have to wear a mask and the mask was fastened down to the table, so it was uncomfortable and frightening. He was very brave to endure this treatment awake. I will attach a photo.

While we were in Houston, we met with Dr. Peter Zage, a pediatric oncologist who specializes in neuroblastoma. We reviewed Michael's situation, and talked about possible treatments and the clinical trials he is eligible for based on his diagnosis and recent relapse. Yesterday we met with our primary oncologist, Dr. Amy Pass, and had a similar discussion. We also met with Mark Dungan, who works with NANT (www.nant.org), a neuroblastoma foundation that specializes in clinical trials for children with advanced high risk neuroblastoma. Our next step is to meet with specialists at Cook Childrens in Fort Worth and Sloan Kettering in New York. After these meetings, we will formulate a plan and make some decisions regarding treatments, therapies and clinical trials for Michael.

Michael will have scans and another bone marrow biopsy in about three weeks to determine the progress of his cancer, and the results of those tests will significantly impact what we do next.

Starting today, Michael will begin oral chemotherapy for at least three weeks, until we determine his next course of treatment. He can do this from home, other than weekly blood work and exams.

And now, here are some updates on a few upcoming events:

For those of you in Dallas who have been emailing me about this, the rumors are true. Mike Malone is speaking at our church this Sunday. Our pastor, Father Dannals, asked him to talk to the Adult Sunday School Family Living class about the last 16 months and our experiences with Michael. He has been working on his presentation all week, and you are all welcome to attend. You do not have to be a member of our church to come. It will be at Saint Michael and All Angels Episcopal Church at 8011 Douglas, Dallas, TX in the Parish Hall at 10am. Feel free to email me if you have any questions about it.

This Wednesday, April 13th at 8pm is the Comedy Show honoring Michael at Hyena's Comedy Nightclub, hosted by Honor Shearer. This should be a very special night, and even if you cannot attend, feel free to buy a ticket to donate to one of Michael's nurses or doctors. You can order tickets by emailing Honor at honorstar@sbcglobal.net or calling her at 214-709-7199. You can also email me, too.

Next Friday, April 15th at 11:30am is the 23rd Annual Children's Cancer Fund Luncheon and Fashion Show benefitting the Children's Cancer Fund, and Michael was selected to participate, which is a huge deal for him. He recently got to have his picture taken with Troy Aikman and Roger Staubach, who are the honorary chairs of the event. And the picture actually ended up on a billboard here in Dallas. I'll attach a photo of that as well. It is located at I-30 (Tom Landry) east of Myers N/S facing west. If you would like to buy a ticket, you can go to www.childrenscancerfund.org.

And finally, we wanted to tell all of you about a new friend of ours. Miriam Schober, who is a local accountant, generously volunteered to manage all of Michael's extensive medical bills a few months ago. The amount of paperwork and stress involved in this is overwhelming, and she has saved us a great deal of time, angst, and money. She gets on the phone every week and battles the insurance companies for Michael and for us, and we owe her a great deal. She has recently started a cake ball business, and we are hoping that those of you in town will try them. Mike and I brought some home a few weeks ago, and our children loved them, as did several of our friends who stopped by that night. Our daughter has just started talking, and while some of it is jumbled, she can say "Mommy, cake ball please!" clear as day. :) Miriam's email is mschober@sbcglobal.net and her phone number is 972-814-6702. They make a great Easter dessert! :)

As always, thank you so much for all of the ongoing cards, emails, phone calls and prayers for Michael. They continue to lift us up, especially as we enter this phase of his treatment, which is so uncertain and which rests so heavily on our shoulders.

Special thanks to Evelyn and to Charlotte who, even though I see them every week in Dallas, drove their children to Houston while we were at M.D. Anderson so Michael could have friends to play with while he was out of town (and so Mommy could, too). xxoo

We will keep you all posted as our plans progress.

With love and hope,

Alison & Mike

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 eec@swbell.net 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

As some of you know, thanks to a good friend, Michael had the opportunity this past summer to sit in the commander's seat of the Space Shuttle simulator, the very one the astronauts train on. He was a natural, successfully landing the shuttle on his third try — something senators, dignitaries, and assorted VIPs regularly fail to do. Through another friend, Michael's photo and story were sent to the most recent commander of the International Space Station, Col. Doug Wheelock, while in orbit. The following photos were sent by "Wheels" to Michael. Who apparently has friends in very high places...

-Mike

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