Rough Start to Year 2

Hi all – Nicole and I realized that it has been awhile since we’ve provided an update on Sally’s treatment. Looking back, it’s been over a month, before this current cycle we’re currently about to conclude. Sorry about that, our lives have been crazy to say the least. We continued to take advantage of the warm weather and spend our weekends out doing things and visiting friends, have had some up and downs with Sally, work has been very busy for me and we have been in the middle of a HUGE amount of publicity in driving awareness for Childhood Cancer Awareness Month. I could write an entire post on it, although we’d like to use this post to focus on Sally’s treatment. As I mentioned, it’s been a couple weeks, so will run though and summarize.

On August 4th we kicked off the new cycle, our first of Year 2 of treatment. Sally will remain on intensive chemo for this second year due to the high risk of relapse with her MLL diagnosis. Sadly we continue seeing many kids battling this same diagnosis relapsing, including one last week. For now, doctors have removed the oral chemo Sally usually received at the start of the cycle to give her body a break since it always led her her counts dropping too low and terrible GI issues. Still TBD if they will reintroduce it later. Instead they skipped right to Day 4 and gave her the next planned chemo, as well as the chemo in her spine via the spinal tap.

Sally pole1

Nicole found an IV pole with a low handle so Sally was able to push her own chemo around.

Despite removing the four days of oral chemo, Sally had a rough couple days. She had GI issues almost immediately with a lot of vomiting. She also kept hovering around fever levels, although decided against calling it in since we knew they would give her an antibiotic, which historically worsens her GI issues even more. Finally she had a high fever and we were concerned about her hydration, so ended up spending that first Sunday in the hospital getting IV fluids and antibiotics. That following Wednesday, Nicole had to bring her in again for hydration, remaining at MSK til after midnight. We returned with her the next morning to find that her ANC had dropped from 1.0 to 0.4 in a matter of hours, on her way to bottoming out. We hadn’t anticipated this, thinking removing the oral chemo would help us avoid it. As a result, the team put us on GCSF shots at home for 4 straight days to promote a faster rebound of her counts.

Sally Throw up 2

Sally was throwing up a lot, as you can see our missing couch cushion cover.

At the same time, we made the case that we felt the new anti-pneumonia drugs they switched everybody at the hospital to was causing much of her nausea. We were at the point where we could not keep her hydrated without IV fluids.  The team reluctantly agreed and decided to switch her back to the old meds.  However, we were denied an IV backpack to bring home with us. Sure enough, we were right back in the hospital, this time they again gave in and let us take her home with IV fluids for the coming days. However, the bag ran out on Sunday, and with her continuing to gag and vomit we brought her in to get checked out, only to find that she required a red blood transfusion. So we spent our second Sunday as a family at MSK with Sally getting fluids and a transfusion.

Sally Sick 3



Family Day at MSK, like father like son.


….and son.

With all this, we limped into Steroid Week, something we had hoped to avoid. Luckily, Sally finally went a 36 hour stretch without vomiting and was able to hold down fluids for the first time in almost two weeks. As quickly as her mood improved, it went south again. At a follow up appointment Sally required a transfusion of platelets. She continued to feel miserable from the steroids, however couldn’t settle enough to sleep well either. If you can imagine, the #EmpireGoGold stuff had taken off in the press. Nicole and I were doing TV and newspaper interviews left and right, often giving her drugs just so we could get her through it.

Sally Joel 5

We had to give Sally Ativan to get her through this interview as she was totally miserable from the steroids and not feeling well. Joel Waldman, the reporter here, has done incredible work bringing awareness to childhood cancer the last month. We heart him.

Sally continued to be miserable, landing us in the hospital yet again on a Sunday with a high fever. We were also told her WBC’s were sky high, the highest we’ve ever seen them. Nicole and I both feared that Sally had relapsed as that is often a sign of it. Doctors thought it was likely from the steroids and GCSF shots the week prior. We were sent home after more fluids and antibiotics and told that if they came back down in the next day’s tests, we were in the clear.

Sally Miserbale Steroids 4

Miserable but can’t sleep.

We had a rough night of stress, terrified that our little girl had relapsed. Luckily a blood test the next day revealed the counts coming back down, so were able to breath a sigh of relief. However not for long, as it was determined that Sally had an infection and needed to be admitted. Tests revealed that she had an E coli infection in her cental line, likely from them coming into contact with one of her stools. She was put on a heavy regime of antibiotics for two weeks and spent the next 48 hours in the hospital. The antibiotics gave her explosive diarrhea, to the point where she was going through several outfit and bed linen changes daily.  Thank god our neighbor Amy came to the rescue and did laundry for us as we were running out of linens and our bathroom was being filled with soiled clothes.

Sally Hospital 6

Admitted with an E coli infection. Mommy is teacher her to fist bump.

Although they caused diarrhea, the antibiotics brought back our little girl’s spunk, which we’ve thankfully had since she left the hospital. She’s received chemo since, with some nausea, but nowhere near those first three weeks. However, we fear this upcoming week. Sally finished her last dose of daunorubicin last cycle, the red devil. She will receive two doses of cytarabine over two days. She has had only one dose per cycle to date, never causing any side effects until this past cycle which brought on severe nausea and a fever. Historically this chemo causes extreme nausea when given more than one dose, which is why they replaced it partly with daunorubicin (which causes heart damage, go figure). So we are anticipating Sally to have a rough week. Hopefully we are wrong, I guess we’ll find out when she receives it Tuesday/Wednesday.

1sallyhappy 8

The sunshine returns.

This will bring us to the end of the cycle. Writing it out, I have no idea how we managed to get through it between all of that time at the hospital, the rough weeks at home and all of the interviews and events for #EmpireGoGold. We also had to take William in for an overnight EEG test and MRI to rule out seizures and other issues with his brain due to some issues we’ve seen with his behavior the last few months. Luckily all came out clear, however we are continuing to see if there are issues beyond his celiac disease. On top of all of this our very close friends the Wagners gave birth to a little girl, only to find out little Bridgett had a heart issue that almost took her life. Luckily after a month in two hospitals she is home, however suffers from severe damage to her leg from a blood clot brought ton from the heart issue. It forced Nicole and I to revisit those early days with Sally at MSK when we could have lost her. I had a hard time focusing at work the last few weeks, writing this I now see why.


William getting his EEG, we had to spend the night in the hospital.

This Thursday is Sally’s birthday, our little girl will be turning two. Her first birthday was spent undergoing surgery to have her feeding tube installed. We’re hoping to spend this one together at home as a family. In lue of gifts, we ask that you donate towards Nicole’s walk at CureFest, a major event for pediatric cancer awareness in Washington DC. Funds will go to Frankie’s Mission, a local organization that helps families battling childhood cancer like ours. You can click here to support her.

Thomas turned eight on Tuesday. Sally was admitted for his birthday last year, which upset him. This year, we were not only together as a family, but we lit Times Square GOLD for Childhood Cancer Awareness Month as a direct result of the #EmpireGoGold movement we worked so hard on throughout this cycle.

Times Square

Lighting Times Square gold, surrounded by families battling cancer and friends who came out to show support. This photo was just amazing, I asked for a moment of silence in my speech to remember the kids we lost that couldn’t be there.

Sally Bday

The birthday boy getting a high five from his sis.

Please keep Sally in your thoughts and prayers, and hope this week is smoother than expected. Also, please go gold for all the kids like Sally battling cancer, and those who have lost their lives to it. Gold nail polish, gold lights on your house, gold shoe laces. Just help us turn the world gold and spread awareness for the desperate need for better treatments so future families don’t have to go through what we and too many others do to save their children’s lives.


12 Responses

  1. Rose Vavallo
    Rose Vavallo September 8, 2014 at 5:35 am | | Reply

    Your Besutiful little Sally has been in my and my family’s continued prayer along with your Family . You are 2 Extremely strong and motivated parents based on what you are going through and able to accomplish . May The power of the sacred heart be with you both and your family. we will continue to pray for your Little girl and all of you . and we will continue to spread the gogold awareness . My family will also be making a donation . May God Bless your Family .

  2. Bob and Karen Hoppe
    Bob and Karen Hoppe September 8, 2014 at 7:55 am | | Reply

    You’re always in our thoughts and prayers…God speed….

  3. Marie Sidoti
    Marie Sidoti September 8, 2014 at 8:16 am | | Reply

    I’m happy to hear that Sally is feeling better at this time, and I pray that she will enjoy her Birthday with you guys. You are a Special Family and I admire your Strength, Love, and Sense of Humor even through these difficult times. Send my love to William and you are all always in my prayers. XoXo

  4. Jim Tomczak
    Jim Tomczak September 8, 2014 at 9:12 am | | Reply

    Love and prayers to Sally and your family. Praying all the time for her.

    Jim and Ronda Tomczak
    Omaha, Nebraska

  5. Sister Virginia
    Sister Virginia September 8, 2014 at 9:20 am | | Reply

    Matt and Nicole, my heart aches for all you and your children have been through. I feel so badly that there is nothing I can do to be of more help. Please know that I have everyone I know – and many I don’t – praying for all of you, that God continues to give you the strength and support you need.

  6. Sandra
    Sandra September 8, 2014 at 9:45 am | | Reply

    You are a remarkable family, Sally, William and Thomas are so very lucky to have you both as parents. Was so happy to see you and Sally at the lighting of the parachute. You have accomplished so much for pediatric cancer. I walk the avenues of Bay Ridge and see the businesses going gold but then I see the private homes also gold it is amazing. I pray that Sally does well with her next treatment. Continue to stay strong and know that thousands of people are praying for Sally and all of you.

  7. Colleen Jasinski
    Colleen Jasinski September 8, 2014 at 1:04 pm | | Reply

    Always thinking of you and praying for you all…Watching what you guys have done with the #gogold movement, I can see where Sally gets her fighting spirit…Sending love…cj

  8. Sharon R. Kabel
    Sharon R. Kabel September 8, 2014 at 6:49 pm | | Reply

    I will look for some gold shoe laces when I go shopping tomorrow and keep up the prayers for all of you incredible children…little did we know when you were children… I love you all and hope the boys did well in school last week. Mom K

  9. Bozena
    Bozena September 11, 2014 at 12:26 am | | Reply

    Happy Birthday Sunshine!!!! And hello to all amazing members of this family! You are in my heart. I am proud of what you could accomplish! All the best to you from Bozena and Kasper

  10. Juli
    Juli September 11, 2014 at 5:18 pm | | Reply

    Thank you for sharing this unbelievably challenging journey. My heart goes out to all of you, and I also have no idea how you’ve been able to get through all of this, plus work, plus press, plus being available to William and blogging about it all to boot. You and Nicole are clearly an amazing team.

    Happy 2nd Birthday to your beautiful Sally. Just by looking at her, it’s easy to see she is ray of sunshine, and astonishingly brave. Sending love, healing wishes and thoughts her way, and will be adding a lot of gold to my family’s wardrobe this year!

  11. Steven Taylor
    Steven Taylor September 29, 2014 at 1:31 pm | | Reply

    I would like to say Happy Birthday to your beautiful and brave daughter, Sally. She is absolutely incredible!

    I would also like to say thank you to your family for sharing your journey with others, and also for all the fantastic work you have done in advocating for childhood cancer awareness.

    You are an amazing and inspirational family. I will keep you in my thoughts and prayers, and I will support your campaign, as well as others, from Vancouver, Canada.

  12. Amelia
    Amelia September 30, 2014 at 12:41 pm | | Reply

    I wanted to express my sincerest well wishes to you and your family and positive vibes as you battle this awful disease. I am a survivor of Lymphoma (4 years out) and a mother and couldn’t imaging having to do what you do every day for Sally. You are an inspiration.

    I am a dedicated participant of the Leukemia and Lymphoma Society’s Moms In Training exercise group. We have many moms throughout the 5 boroughs that are survivors and caregivers to children battling these diseases. We have been a group for a little over 3 years now and our numbers are growing. Last year alone, 280+ moms raised over $1 MILLION for the cause and, most importantly, our group only has 4% overhead, so almost all of our fundraising goes to research. I would love it if you would consider coming to one of our Brooklyn practices (Saturday mornings at 9 a.m. at the 9th Street entrance of Prospect Park) to give a mission moment. You could also stay and see what we are all about. Please contact me if you are interested. But even if not, I will run for Sally this season.

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