Hi all – Yesterday, Nicole and I had to make the kind of big (and scary) decisions with Sally’s treatment that we haven’t had to make since the early days of treatment. One of those decisions that we hope we never have to revisit or feel regret about one day. This blog post is to lay out our thinking for that decision that put Sally’s life, both immediate and long term, in our hands.
Thursday, we spent most of the day at Sloan Kettering where Sally underwent another MRI. She has been on hold with chemo until the Neurology Department could diagnose what they felt caused the seizures. After a long wait we met with the neurologist and were told that in their opinion, Sally’s seizures were caused by the Methotrexate chemo that she receives (and is known to cause seizures) as everything else came up clear. We agreed that she would remain on the anti-seizure meds for the rest of treatment. One very interesting side effect of this medicine is that Sally has gone from explosive diarrhea 10+ times a day to normal stools. That may change when she restarts chemo, but the break has been much needed all around. She also spent some time discussing Sally’s left leg which has had improvement recently, but still can’t bare weight on it.
So after the seizure diagnosis we were free to meet with the Leukemia Team to discuss next steps. Prior to the seizures, we had been notified that Sally would need to have her central line (broviac) changed out due to the infections she’s been having. The Team, who said we are extremely lucky Sally recovered from the serious infections, was unanimous in switching her from a central line like she has now to a mediport. Most kids on treatment have a mediport, which is an access point under the skin on the child’s chest. It allows kids to go in pools and get wet, things Sally can’t do now with the central line. It apparently has lower infection rate according to the doctors, however speaking with tons of cancer parents about their experiences we’re not sure we believe that. To use the port it has to be accessed, which is done by sticking a needle into it every time she receives treatment. Kids hate being accessed as it’s painful and scary. If we need blood drawn, she would have to either be accessed or suffer a finger/toe stick.
The first big decision we had to make was whether to give Sally a port or another central line. In the end we decided to go against the Leukemia Team’s recommendation and have a new central line installed in a different area on the back. We feel that with a new harness wrap we found online called a CareAline, we are able to keep the ends of the line away from her poop which had been causing the infections. The other consideration was that with Sally being behind developmentally we didn’t want to add any fears that would prevent her development. From day 1, Sally has shown that she will shut down if she doesn’t want to do something. For example, they pushed us into trying to give her medications orally for too long. Sally then refused to eat anything, and still won’t to this day. We don’t want to repeat that, she has enough stacked against her and feel like trying to access her or do finger sticks will put Sally into an emotional shell and stop trusting people.
We had thought that the line was all the team wanted to discuss. However when we arrived he were surprised to find all three of Sally’s oncologists in the room. Apparently the infections and the seizures have them very worried about Sally’s health and ability to handle the treatment. They aren’t totally convinced that the Methotrexate caused the seizures, but do agree that the overall toxicity of the chemos very well may have caused them. Part of the team feels that the 2nd year of intense treatment may be too much for Sally’s body to handle, and recommended that we drop her down to a less intense treatment plan that is used pretty much everywhere else for treating Infant Leukemia. Our concern with this is that MSK treats Infant Leukemia more intensely than anywhere else because of the 47% survival rate, and they feel this harder treatment protocol has provided better results in recent years. Sally’s specific (4;11) MLL translocation is also one of the harder types to treat, and also heavily weighs on our mind.
Lessening the intensity of the chemo doesn’t mean it will be easier on Sally either. Some of the chemo types she’ll receive are in the same family as ones that we have had to remove due to Sally’s inability to handle them. So even with less chemo, she could have more nausea, more GI issues and counts hit harder than what she is currently dealing with. The team admitted that some kids have a harder time on this alternate treatment plan. The grass isn’t always greener.
The rest of the team feels it may be too risky to change Sally’s chemo to this new plan, citing the success of the current plan in recent years. As Nicole put it while driving home, “We can either keep going as planned and she may have severe long term side effects and a lot of issues like the seizures and leg pain come up; or we can switch to the other treatment plan which may be easier for her but a better chance we could lose her forever.” Nicole mentioned how Sally loves to dance, what if the current plan prevents that by causing leg damage? However, what if we change to the other one and she doesn’t live to dance? What if she would never relapse and we’re exposing her to more harmful chemo than we have to? It was a decision of two evils and one that too many parents in our position have to make.
What we decided on after much deliberation was a compromise among the Leukemia Team. We will switch Sally to the less intensive plan for approximately two months to hopefully give Sally’s body a bit of a break. Following those two months, we will return to the current intensive treatment for the remaining eight months that Sally needs to receive chemo for. The relapse risk for this temporary change is low, will hopefully give Sally’s marrow a chance to recover, and gives her the best chance to survive.
At the end of the day, if we switched to the less intensive plan and things didn’t end well, Nicole and I would never have been able to forgive ourselves knowing we could have done more to prevent a relapse or even save her life. We, her doctors and nurses are going to keep a very close eye on her for the rest of treatment to monitor the side effects from the more aggressive treatment. Nothing is set in stone and we can change up the treatment at any point over these final ten months. We sent over our decision yesterday and will begin the eight weeks of the less intensive plan on Tuesday, however we are still learning the specifics. Regardless of our decision, they were going to remove the spinal tap of chemo she received each cycle, after the seizures they didn’t want to expose her brain to any more direct chemo.
As Dr. Steinherz told us before we left – “All you can do is make the best decision you can with the information you have today. If you do that, then you can’t allow yourself to have any regrets and to just believe that you did what you thought was right.”
We feel we made the best decision, only time will tell if it was the right one. Please keep Sally in your thoughts and prayers.
You have always made decisions in Sally’s best interest. You made the right decision now. I continue to hope and pray that in a few years Sally will have little or no recollection of this phase of her life (my daughter-in-law, diagnosed at 4 and 5 years of treatment remembers very little) and the two of you will dance at her wedding. God bless you all.
Matt, you and Nicole are on a journey I can not even imagine. That said, I hope you know that you are being guided by the hand of the God who has given you this burden and backed by constant prayers from all over. You two know what feels right and are the only ones who can make the decision for Sally’s future. God bless and strengthen both of you.
I pray and think of you every day. Please know and believe that whatever decision you made or will make in the future for Sally is made out of all the information you receive but most of all they are made out of love for Sally. She is a beautiful little girl with a really remarkable set of parents and two great brothers. God bless Sally and all of you.
Nicole, Matt, Sweet Sally Sunshine and family, you are always in my Prayers. I Pray for God to guide your decisions and most of all for Sally to have a full remission forever and for your family to experience peace and happiness.
God Bless you all! <3 Supporting your choice. It sounds like a very, well thought out plan. <3
I’m praying for your little warrior. I have not been in your shoes but I do have 3 precious children and I do know a heart of a parent. Despite the pain she is going through she is charging on because of the love and dedication you two have selflessly given. I love what the doctor said and I hope you take it to hear and hold your heads up in the utmost confidence that your doing all that you can.
Matt and Nicole, I am very proud of you and your decision! You don’t know me but I have been following your posts. Sally and your family have been on my prayer list for a while! I pray for her and many other of “my baby’s” everyday! You just know that what ever the out come of God’s plan for Sally, you are doing everything right and to the best of your ability! Always in my thought and prayers! Thank you for sharing and updating! Love you all in Christ! Love Monica Ford
So with your gut….pray… And God will take care of your daughter…. That’s all we can do…the Maroneys pray for her everyday!
What an incredibly difficult decision. Sending many many prayers your way. God bless Sally and all of you. Angela
My daughter, Payton’s original central line was placed on her back (at 12 months of age) and we went through about four of them due to infection-then they put it on her chest and that one lasted the rest of her treatment. Have them discuss front side-they do the back in babies because they are fearful they’ll pull it out but we were able to keep pays wrapped enough that she didn’t even bother with it-after all the infections we had I wish now they’d just put it in the chest to begin with. Our team at msk felt it was from her laying on it so much that it caused infections. Best of luck to your family!
Hi Matt and Nicole,
I admire you both so much. I could go on and on about it and how I pray for Sally and you both and your boys… But I won’t. I would like to ask if you accept donations. Because while we all feel so helpless In the face of pediatric cancer, donating to your family would make me feel better. It’s selfish, I admit it, but I hope you will accept it.
All my best and most positive vibes are headed your way each and every day.
bless you all. I will be sending love and light and healing positive energy to your sweet sally. you are amazingly strong courageous parents, loving your beatifiul girl with all you’re made of. thank you for sharing her struggle, and your struggle, with us. go sally go!!!!
I love you guys so much. I don’t know what else to say.
One step at a time will lead you through even terrible circumstances. This experience will change you for life. You don’t always get to choose the outcome but you are doing the best thing possible by owning the decision. Too frequently parents do not recognize the decisions that are theirs and that leaves them powerless over the few things they do have control of.
I know that because I founded and for ,40 yrs ran, an organization that worked with 2000 plus parents a year.
I wish you and your baby well but no matter what remember you made the right decision by choosing to make one.
YOU GUYS ARE FACED TO MAKE DECISIONS, NO PARENT SHOULD MAKE. I know in my heart that all you have ever done is think of Sally and think is what is best for her. You are amazing parents and i will continue to pray for all of you. Your little sunshine is a warrior and you are surrounded by love, prayers and hope
Keeping you all in our hearts & prayers.
Continued prayers for all the Kabels most especially Sally. Trusting that with God’s guidance and all the love that you have in your heart that you have made the best decision for Sally. May God continue to be with all of you.
The Lord knows your heart, so try not to second guess yourself. Love you all so much, Gram K
This is the toughest part of the this whole process – having to make life changing decisions on behalf of our children. I have learned that we as parents are given a special gift of “knowing”. After gathering all the research, if we go with our gut, I believe it is the best decision for our children.
Thinking of you during this most challenging part of your journey and praying for you and Sally.
I cried reading this. The decisions are impossible. You’ll never know what the alternate path would bring, so you can’t second-guess. It sounds to me like you’re doing the smartest, most level-headed thing you can at this point. We’re all behind you and Sally. No matter what.
My thoughts and prayers are with you all. I can’t imagine what you’re going through. Sending much love and strength as you face these new challenges. Sally is a fighter…she will beat this!
Your whole family are in my prayers daily. What an incredibly difficult journey you are going through. I admire your courage, patience and determination to get Sally through this terrible disease. You had mentioned in an earlier post that you don’t have a washer/dryer. If supporters of Sally could raise the money for these, do you have the room in your home for them? I would like to help raise funds for this if you would let me. Sending hugs to your dear family.
As parents, we are faced with things that leave us asking the Question WHY????
Why my child, what did we do wrong, did we make the right decision, etc………
As a parent of a child with Hodgkins lymphoma, I can speak from my heart.
I tell u this with a painful memory of what once was.
The decisions that needed to be made, were made with a lot of advice and questions being asked and thought about. However the final result came down to trust. Trust in your Doctors, in your Spouse and in God. Like the saying goes God couldn’t be everywhere that is the reason for parents.
My son had the medi-port in his chest. A very dramatic event that was a day in Hell to have placed. When it had to be removed was a day sent from Heaven above. I am fortunate enough to say my son is not in remission. I live every day saying we made the right decisions, but at the time no decision was right. It was the luck of the draw. All our decisions were dealt with as they were handed to us.
One day my son was an energetic great athlete, the next day his world our world ripped apart. There is no definite accurate decision!!!!
Look into your heart and into Sally’s eyes, look at her as she sleeps and ponder.
I promise you as I believed in the Blessed Mother your answers and decision will come to you. As parents we are all learning….. some lessons are much to hard…..and some we will never understand.
I believe you are so destroyed mentally, but you will make and know that the decisions you make are made with the ultimate gift….LOVE FOR YOUR CHILD!!!!
May god bless you and your family during this time. May your strength continue and know that all our prayers are with Sally Sunshine always!!!!!!
I apologize, a typo my son is in remission.
I was getting emotional as I was typing.
I wish the best for Sally and believe that God, the blessed Mother has her in their prayers and watch!!!!!