Hi all – Sally had a checkup today that we hoped would be uneventful. Good news is that it was, her blood counts all looked good other than the need for a plasma transfusion, which she received before leaving. The stage is set for Thursday where Sally will undergo a spinal tap and bone marrow biopsy. We won’t receive results for at least a week, but these will tell us how the first cycle of treatment performed. Regardless, Sally will start her 2nd cycle of intense chemo next week which promises to be very difficult.
My day unfortunately started with reading the national news story about the 2 year old boy with Leukemia who passed away last night in his mother’s arms after serving as best man for his parent’s wedding. Seeing the photos brought tears to my eyes, Sally looks very much like him now. All of us dealing with a child suffering from cancer are part of a team, and losing him really hits home personally. It was a reminder of how serious and deadly this is. To make matters worse I read some things the Leukemia and Lymphoma Society had sent me a few weeks ago. Although we were aware of the statistics when this all started, reading them again was emotionally difficult. This is from a St. Jude’s website that summarizes everything I read:
“The Davises learned that their daughter had ALL. Although most children with that disease have a projected cure rate of 90 percent, the outlook is not rosy for the 3 percent of ALL patients who are infants. About 80 percent of those babies have an MLL gene rearrangement, which has a dismal outcome.”
This is what Sally has.
Infant Leukemia is unpredictable, hard to treat and scary. Its a reason why comments downplaying it bother us so much. I also read of a child who began treatment as an infant who was in remission for the first 11 months when the cancer came storming back, resulting in the need for a bone marrow transplant. Just one month from the maintenance stage of chemo.
The above paragraph was included in a larger story about successful treatment, and I also speak often with a parent (Sarah, who I first mentioned when this started) whose daughter also had infant ALL with the MLL and has been in remission for 4 years. Treatment can work, but in the back of our minds we carry the terrifying weight of the statistics with us. We do our best to avoid these thoughts, and focus on today. But it can be hard, and some days like today impossible to avoid. One day at a time isn’t just a saying anymore, its the difficult reality we live in now, taking a day at a time keeps us sane.
Nicole and I are terrified, but know we need to push that aside for Sally’s sake and be strong and positive. I know from speaking to people recently that we’re apparently doing a good job of that. It’s harder than it looks, but won’t have it any other way for our little girl and her big brothers.
Please pray for Sally.
Matt
My recommadtion is to fill your inner space with FAITH not FEAR. Only one of the two can hold that inner space and FAITH feels better. Like @ Orly Amor had taught me founder of Globel mentoring center.
You do a beautiful job telling Sally’s story. Just know you have total strangers in St. Louis that pray for your family everyday:-)
I am so sorry that this is happening. Please know that I think of you guys every day. I feel for the families who have not made it through; every time I hear of sick kids, even if I do not know them, I am sick about it. I am sending you guys healing thoughts tonight!
I can’t imagine…..I have written so many things and erased to try again. I just don’t know what to say. I can’t imagine the never ending battle with the unknown, the fear, the anger. We pray for Sally and your entire family, daily! These good news days are what we pray for. One at a time. Keeping the faith!
Faith is not to have a perfect knowledge of things: Alma 32:21; ( Ether 12:6; )
xoxoxox….God Bless
Going to bed and doing my routine ……get in bed, get my iPad check Sally’s update and say my prays before sleeping. You, your family and Sally’s are always in my prays. Good night. Please try to keep good positive thoughts. Stay focus try not to go to the dark side stay looking at the Sun!! I too am guilty of worrying and being so sick after this mornings news. I quickly prays that you guys would be too busy to have seen it. But you did. So today was a tough day. Hopefully tomorrow you’ll hear about more kids that kicked cancer’s Butt,,,
And will all keep praying 🙂
Total stranger ( and mom of a 4 year old with ALL) praying for you in upstate NY.
Matt and Nicole your strength is beyond what I could imagine. You are both doing an amazing job and I’m sure it’s in no way easy. It’s not easy holding it together when so much is uncertain and unknown.
Serenity Prayer
God grant me the Serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as Jesus did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.
–Reinhold Niebuhr
Thinking of Sally and praying for her and you all. She is surrounded by so much love.
Many many prayers and positive thoughts coming to the whole family!!
There is a lesson to be learned for some reason that maybe only God knows. God loves and cares for Sally and her wonderful family. Pam–Sharon’s friend.
“Terrified” is probably an understatement!!! Our reflect as humans is to try to say something to try to make you feel better, however we know that it probably just makes you mad to hear it knowing that we CAN NOT possibly know what you are personally feeling! The reality of it is NO ONE knows what is in our future (and that freaking sucks), however we come from a very STRONG Catholic family and have seen miracles at work! I BELIEVE in the power of prayer! I believe in the power of SALLY!!!! We have to believe that she WILL overcome this, because if we lose sight of THAT we lose sight of ourselves! You just have to keep doing what you’re doing! You’re doing a fantastic job keeping us all up to date on what’s going on with Sally, and expressing your true feelings… It’s okay to be mad!!!! You wouldn’t be human if you weren’t. That too is a common reflect of being human! It’s not fair that you and Nicole and your whole family are having to go through this….IT’S JUST NOT FAIR!!! I DON’T understand, but I DO!!!
This is where God and faith comes in. NOTHING is IMPOSSIBLE with Him. He is the same God that rose from the dead …. talk about beating a statistic! Dont look at any more statistics… Because God beats all statistics. He has the final say. He loves you and Sally so Give it all to Him and wait. I pray for all of you
Keep FAITH in your hearts and smiles on your faces……Prayers continue daily.
xoxo
Hi Matt and Nicole,
I’m a high school friend of Sabina’s. My son, Matthew was diagnosed with stage IV Neuroblastoma in Sept of 2010. He was 7 at the time. We were so over whelmed and scared, it’s hard not to be. The road through treatment is difficult but as someone told me, focus on the goal. One step at a time is all you can do, I don’t say a day because at times that can be too much to think about.
Cancer creates new families, reach out to others that have walked your path, that truly helps. Our family motto was “no retreat, no surrender”, it’s a fight but you all will come out stronger. You are not alone. Praying for sweet Sally to recover completely and for strength for your family.
Sending Hugs!
Hi Matt and Nicole,
I am all packed and waiting for Jeff to pick me up in a few minutes and then we will begin our journey up North to see all our family and, of course, the five of you. It is hard to read what you just wrote regarding our little girl…but truth is preferred. I want to see our Sally sunshine fight the fight and be victorious. It is so painful to hear the statistics about this particular disease, yet we hope that she will be able to battle on. I send my love to all of you and appreciate that there are many unknown people who battle with us. Love and God Bless, Gram K
Both you and Nicole are doing a great job of “keeping it together”. You are wonderful support for each other and know that you and your family have a lot of love and support out here….stay strong…
You are entitled to any feeling you have concerning your daughter and the statistics. Amidst the fear and anger and worry, I pray that you may you also feel love from those who surround you (and who mean well, even if they don’t know how to show it). Sending you thoughts of deep peace as you grapple with the difficulties now and ahead.
Vanessa
We are definitely praying for all of you.. Sally has proven to be a though cookie and there is no doubt that you and Nicole, are stronger than you think.
Faith is the light at the end of the tunnel
I pray for Sally and your whole family every night.
Please know statistics are based on the average … not the whole. From what I have seen and read – Sally is above average in every way possible.
She has your families strength to lean on in times of trouble – and something that is all what she needs.
I will continue to pray for your sweet and special Sally.
We don’t know why this happens to a beautiful, innocent child. Thank you for sharing your suffering with us. We can join with you in prayer, not only asking for healing for Sally, but the physical, emotional and spiritual grace to meet every day’s needs. May God be with you every step of the way.
My love & prayers go out to all of you.
Matt, say hello to your mom & dad for me.
I wasn’t sure how to feel (of course tears streamed down my face immediately) or what to write after I initially read your post, but I feel everyone before this has pretty much summed it up. Just take it one day at a time, cherish every minute with Sally and the boys, that’s all you can do. She IS a fighter, as you have been watching her handle everything she is going through and sadly doesn’t have the voice to tell you what’s wrong, what hurts, what she needs, etc. and even at a young age, she is proving people wrong and fighting her fight in an amazing way!!! I continue to pray for Sally, everyday, as well as you and Nicole and the boys. Good Luck tomorrow with hopes of more news for our little Sweet Sally Sunshine.
Aunt Cindy
Matt, Nicole and especially Sally,
I am so sorry that your family has been chosen to go through this ordeal. I am also sorry that some days, you are going to get TMI. Hang in there. Sally is definitely worth fighting for!!!
Remember, you are allowed to have bad moments, but don’t let them overcome the good ones. Hang on to the moments Sally smiles, cuddles and hugs.
BTW, Matt, you are a very good writer. Your teachers would be proud.
Dear Nicole and Matt,
I have been with you from the beginning of this dramatic journey. Sally, You and the boys are in my and Kasper’s hearts, thoughts and prayers. Please tell Sally that I love her, miss her and believe in her strength. I am so sorry that such a tragedy touched such a wonderful family. I know that Sally couldn’t possibly get better, more loving and carrying parents that you are. I am sure that she is grateful for your love, patience, all smiles, kind words and for being all the time for her. Even though, she cannot say it, that appreciation and gratitude is in her eyes and always have been.
I am so glad to see all type of support you get from your family, friends and even strangers….. and I am not surprise since goodness always attracts goodness.
xoxoxx
Bozena
You are all in my everyday thoughts and prayers. What you are going through is more difficult than most can comprehend. Don’ let statistics get you down… I am an adult who, with a stem cell transplant, is a survivor of AML. The stats put me in the 30 per cent who will beat this. I HAVE. My new daughter-in-law is a pediatric leukemia survivor (24 years now). Her parents were told she wouldn’t make it through the night when she was diagnosed. I know this is of little consolation to you, Sally is your heart, but keep the faith and trust in your wonderful medical team. You and Nicole ARE amazing. Prayers, Marie