It was warm out this weekend so were able to dress Sally in dresses.
Brothers and sister playing.
Sally and William played together for hours over the weekend. It’s great to see them interacting, she even crawled up on him and gave him this hug.
William’s birthday today, we try to make the boys’ birthdays extra special because they sacrifice so much the other days.
Nicole’s bosses, who are like family, came by and brought their dogs who Sally simply adored.
Hello all – We haven’t written much lately as Sally has been doing quite well, typical of the weeks between cycles. The “voo-doo” of using yogurt and gamma globulins definitely helped with Sally’s digestion since our last update. She’s been able to tolerate more milk in her stomach with regular stools. We did have to stop the voo-doo this week while Sally was at risk of being neutropenic from last week’s chemo. She has had some nausea and vomiting since doing that, we’re not sure if that is a result of the chemo, the Tamiflu or lack of yogurt/probiotics/IGG.
Other than that, we’ve been kept busy with things like William having the flu last week. Nicole also got to go on her spa day, courtesy of Dena Sherwood over at The Truth 365/Arms Wide Open, which was a nice break for her on a Sunday afternoon.
On Monday Sally begins Cycle 7. Nicole and I were talking recently and realized that we’re around a third of the way through Sally’s treatment. We’ve been at this since July 15th and have until Fall 2015 to go. We’re very concerned about this upcoming cycle after all of the challenges of the last one, including the week stay at MSK where Sally was in so much pain even morphine didn’t help. We’re also concerned about her marrow sample to determine if she’s still in remission. We’ve seen too many relapses the last few weeks, all of them coming without prior symptoms. This cycle also coincides with my busiest few weeks at work, the added stress being felt by everyone in our family.
Nicole traveled up north on Sunday with Scarlett’s parents for Mac’s Memorial Service. They sang songs like “You Are My Sunshine” and “Itsy Bitsy Spider.” They made clear it wasn’t a celebration of Mac’s life, it was cut too short in order to celebrate it.
Collage of photos from Mac’s memorial service.
Nicole taking me through the pamphlet and explaining the service that night brought tears, and instigated a conversation of where we are at. We are both tired, not only from a lack of sleep but…
– From shouldering the constant stress of having a child with a potentially fatal disease.
– Of not being able to give our sons the attention they require.
– Of having to fight for simple treatments or remedies that will make things easier for Sally that should be obvious after almost nine months of doing this.
– Of having to watch Sally’s physical development crawl along due to the fact that her periods of feeling good are brief and infrequent.
– Of not being able to easily rub her back or belly due to her central line and feeding tube.
– Of not being able to just go somewhere as a family without having to weigh the risks of what we would expose Sally to.
– Of seeing Sally go through periods of nausea where she can’t hold food down.
– Of our sons having to be exposed to all of this with their baby sister.
– Of not having the energy to live life to its fullest from all of the treatment and stress, even though we appreciate the small things in life more than ever and being together.
– Of seeing other kids in pain whether it be with neuroblastoma, Ewing’s, osteosarcoma or Leukemia and the effects it has on their family.
– Of seeing other kids die, including ones we know.
– Of watching parents grieve for the children they have lost, way too early in life.
– Of hearing that Childhood Leukemia has an 85% Cure Rate that doesn’t include Infant Leukemia like Sally’s that has less than 47% survival rate.
– Of knowing there’s little research being done for several childhood cancers, including Infant Leukemia.
It’s mentally wearing for Nicole and I, being exposed to so many extreme ups and downs that we encounter in the world of childhood cancer. Sally’s treatment is longer and more intense than most, so will continue to meet new faces and sadly, lose some as well over the next 18 months we have left. Stats dictate that.
Through everything we continue to find happiness in the fact that we still have our daughter and she is fighting hard, it’s what keeps us going. As bad as things get, we still get to kiss her cheeks and snuggle her at night, which right now is just fine by us. We soak her up as much as we can. The other thing that keeps us going is all of you. Whether it’s words or comments of support, the meal train, stopping to introduce yourself on the street, shaving your head, making bracelets or selling lemonade to raise money & awareness…all of it keeps us going.
Please keep Sally in your thoughts and prayers.
Matt
Saying prayers for you all this blessed holiday weekend…Peace and strength to you always…(and chocolate bunnies.) Hugs!
Bless your beautiful family. From the bottom of my heart…
Our prayers are with Sweet Sally Sunshine -especially during this very holy holiday!! God bless you all and may the Easter bunny be especial generous to your children . !
Amen brother!
You are expected to be tired….from each and every one of those reasons. I’m sure there are more that most of us would list, but you have come to overlook due to your strength.
Thank goodness for your infectious sense of humor. I believe this can take you a long, long way…to the finish line and beyond! <3
God Bless Sweet Sally. God Bless you all! Prayers are constant.
You are an amazing family, I pray for peace and rest before the next treatment starts. Sally is such a happy child and her brothers are like their parents AMAZING!. Continued prayers and good thoughts for Sally and all of you. Thank you for keeping us posted and Happy Birthday William.
Your amaze me with your grace, courage and strength, which are beyond immeasurable. Know that you inspire those of us not facing such incomprehensible struggles to appreciate every single second with those beautiful little souls we love so much.
Keeping Sally, her brothers and her Mom and Dad in my prayers always but in a special way this Easter weekend. I can only imagine how tired you both are. Know you are loved and lifted up by people who are uplifted by your example of self sacrificing and unconditional love. Wishing you all lots of sweet sunshine this weekend.
Like you Matt, I am the co-founder of a Bills Backers Club. Ours is in Portland Oregon. I have been following your journey since the Bills made us aware of Sweet Sally. Please know Sally and your entire family are in my prayers. It is amazing to me how the love of our “homes” and our Bills has brought you all into my life. You and Nichole are doing an amazing job.
Never far from our thoughts.
Praying every day for all of you.
My heart aches for you guys! I can not imagine going thru that….you are both so strong and so special! This week our cousins 3 yr old(on the 21st) son, Littlle Jesse, was diagnosed with leukemia. Luckily for them he has the “good” kind-the kind 85% cure rate….and then I read about the new blue Viagra ice cream ….and I could SCREAM!!!! How upset you must get to see funds allocated for this….I think we need to find a way to set some priorities here! In this season of miracles, I pray as always, for you and Nicole, Sweet Sally, the boys and the medical staff, that their minds and hands are guided by the Heavenly Father..that.each treatment brings her closer to the cure we all pray is right around the corner. Have a wondereful, Blessed, UNEVENTFUL Easter…..hoppin’ down the Bunny Trail. OH….Happy Birthday William!!!!!!
You’re bound to have these kind of days…God bless you all. You’re in our thoughts and prayers…oh yeah…and HOPPE Easter and HOPPE Birthday, William…..
Hi Matt,
I have been following sweet Sally’s treatment for a while now. Your words really were well said . I pray for your daughter, my son and all the other kids that have to suffer and their families. No one really knows what it’s like until you go through it. It’s a long road but one little step at a time you get through it. One day you’ll look back on it and will be overwhelmed by what you all have gone through as a family. Somehow it makes you stronger.
My son was diagnosed in 2010 at the age of 7 with stage IV neuroblastoma. He went through 15 rough months of treatment . we got a break for a few years. he had clean scans and we were cautiously allowed to return to normalcy. Currently we are back in the battle but confident that he will come out on top again.
I’m a friend of Sabina’s from high school and I find so many people are touched by pediatric cancer it is incredible. We will be up at MSK over summer to be on trial for antibodies, since they are experts with neuroblastoma. Hopefully we can meet your beautiful daughter and strong family then. It is definitely the entire family that goes through this terrible illness. I look forward to the day when the funding is there to make pediatric cancer thing of the past.
Praying for lots of good days ahead for sweet Sally, your son and wife and you.
Laraine
Thoughts and prayers for Sally and her amazing family. May this season of miracles and rebirth bring rejuvenated energy and hope to you.
Happy Birthday, William!
Sending lots of prayers and love…
Praying for such an amazing family every day. Glad to hear that hell week is over!
It is good and honest that you are able to express the frustration and anger. I love you…Mom
My Dearest Kabels,
I embrace you all. I am with you with your sorrows and your joys. Your strength was always there and always will be. I know that because I know you.
Happy Easter to your whole family and Happy Birthday to William!! Kisses to Thomas and all the softest and gentlest hugs to Dearest Sally!!!!!
Bozena
Dear Sweet Sally,
Just in case you have not heard lately I want you to know that you have an AMAZING FAMILY…Mommy, Daddy, Thomas, and William who love you sooooo very much and are doing all they physically can to love you and care for you. This Easter Day and the Easter Season that follows is a time of HOPE and I know that not only your immediate family but your extended family and friends are full of hope for your healing and fervently offer their prayers for you and for your loved ones.
It goes without saying that YOU are AMAZING as well and very, very brave, Sweet Sally Sunshine. May God in his loving mercy grant you ALL strength each and every day. God bless you! Peace and prayers, Mrs. Price (Aunt Sarah’s friend)
It’s amazing how strong we have to be in times like this… you and Nicole are amazing parents and your children are very lucky! Stay strong and my thoughts and prayers will continue to be with your family!
Hi ~
I just wanted to let you know I still think of all of you often and you are in my thoughts and prayers. Hang in the and keep the faith, remember God will not give you more than you can handle. You are both amazing and wonderful parents. Please let me know if there is anything I can ever do to help. Peggy