Charlotte's Journey

March 13, the Carolina Hurricanes will have their annual St.Baldrick’s event. This event will help raise money for pediatric cancer research. I can close my eyes and remember Brian shaving his head in the spring of 2014 with a 6 months old Charlotte looking on. A 3 year old Parker and a 5 year old Taylor asking “why”? With a smile, I teased how daddy was almost bald anyway! We told them daddy was raising money to help sick children get better. Although we had supported a friend or 2 (Trevor and Aaron) in the past by donating and such,  how could we know that we would soon be on the other side in just a couple years. That we would one day be reaching out on behalf of this wonderful organization because we believed that the work they do could actually help save our own child’s life. We couldn’t know then that there were sleeping cancerous cells waiting and hiding inside of our baby girl ...quietly preparing to try and take Charlotte away. That Brian’s own St. Baldrick’s fundraising page

May god give this family some peace. Thanks for all of your prayers—we can never know why God doesn’t always answer them in the ways we hope. Kenna’s family’s message: “Kennady went to heaven today at 5:50 am surrounded by family and friends who loved her more than words could ever describe. We were able to spend the whole night with her comfortably listening to music, cuddling and talking about all of our memories with her as she rightfully deserved. After her passing we gave her her last bath and were able to hold and love on her while this beautiful sunrise came up. She came into this world the most beautiful baby, went to heaven the most beautiful angel and gave us the most beautiful sight we could see to let us know she was okay. Words can’t express this pain but we are so proud and happy that she is finally pain free and won over her disease.” All this time, so many of you have not only prayed for Charlotte, surrounding our own family in love and support, but have embraced

Update for all of you praying for little Kenna—man she is a force of nature this one. They need a miracle but she’s currently surprising everyone and surpassing all expectations. After Miles died, and then the Florida shootings, I felt like continuing to rally Charlotte’s Village at that time was a burden. How could I keep burdening people and bombarding them about kids whom they don’t know? And also, even though Mile’s parents wanted to be so transparent, I felt so intrusive witnessing what they went through. I’ve been trying to sort it all out...why I was so attached and hence devastated. It’s hard to understand what and why God places something’s on your heart. I want to believe Kenna needs these prayers as God wants to weave all of our lives together in unexpected ways. There are so many heart breaks and tragedies in this world,  but then there is so much love and kindness and hope. I want to watch this little girl do the impossible and not take the hand she has been dealt. I wond

Miles passed away yesterday Feb 13 just shy of 3pm. He had a massive stroke. I have no words right now but I wanted to let everyone in Charlotte’s Village know so we can redirect our prayers to his parents who are currently hunting for an apartment to rent because they cannot bear to walk back into their home. They cannot bear to go home without him. As we sit here with Charlotte’s amazing news to celebrate, all I want to do is cry and be mad at God. As the children and I prepared a special Valentine’s Day dinner for Brian, my mind and heart kept going back to Mile’s and how he will never grow up. He will never get to celebrate how he beat this cancer down, because the treatment itself is what killed him. I hope God hears our prayers and holds his sweet family as they face the unimaginable.

Hallelujah number 1: MSK called with Charlotte’s bone marrow biopsy results: No Evidence of Disease! My heart is still beating up in my chest as I type this. To see their number on my iPhone caller ID instead of them sending the news in an email alerted me. I must admit, I went to sit down and said a prayer before I picked up. We communicate via email for basically everything so seeing the number made my stomach lurch but nevertheless hearing it is as beautiful as reading it. She’s still clear. Every clear scan or biopsy is a HUGE victory. Every day she is clear, picture the odds against her going down. Every week, month, year that there is no evidence of disease, she is that much closer to truly being cured. I can hardly say the word but we have to picture it. Cured. Today, she’s even closer. This week, our entire house, minus Charlotte, has come down with various forms of the flu. We keep trying our best to protect her for worry her immune system is already battling so much and may

Quick update: Miles has plummeted after making great strides. He was able to be taken off life support and was recovering from RSV although suffering from some other complications. His heart stopped for 2 minutes a couple days ago but they got him back on track, everyone involved  claiming they witnessed a miracle in that moment. Now, the Drs say he may not make it through the night as they believe he has a pulmonary embolism. Half of his heart is blocked at the moment and they’ve started a medication to help the clot but it is literally minute by minute for this family as they watch him. I cannot imagine. My mind cannot process. Please pause wheverever you are and PRAY. Please God pull this little fighter through. He has already done so many amazing things...how can his story be over. Please wrap your arms around his parents as they witness this unimaginable situation unfold. God is in the business of miracles and they need another one. Please pray for Miles.

Yesterday was a day full of amazing memories built somehow in a place and space we wish we didn’t need to be but somehow are also so grateful to be. It’s a strange feeling , hard to describe I write this as we sit here waiting for her bone marrow biopsy. We have become professional “waiters” for sure.  I’m not sure I could encompass yesterday in words if I tried. But, I am me after all, so I will try🤪. It started at 4:30am, Charlotte needed to use the bathroom and I felt her burning up. Fever was down to low grade by appointment time 😅 so I suspected a simple virus. At clinic, tests they ran confirmed just upper respiratory virus (like a cold called coronavirus) so we are able to proceed with our procedures. She’s asymptomatic and feeling fine except for soreness at the injection site and running a low grade fever but you’d never know it! Y’all, she’s had me running all over town! Walking, park, Cuban restaurant, cafe for hot cocoa, nail salon, and finally around 5pm when I dragge

Tomorrow, Charlotte and I fly back up to NYC for her appointments at a Memorial Sloan Kettering. It’s hard when it is time to face this disease again. It’s been such a nice break but it’s time to leave lala land and get back to the work of kicking cancers ass. However comfy we might feel at the moment, even when the tiny voice inside might say with a groan, “ugh I don’t wanna. It’s nice and cozy right here. Aren’t we done? Do we have too?”, like a child might say on a morning they’d rather stay home and play with their toys and do whatever things they love doing, we cannot rest for long. And at the end of the day, man are we so grateful for the fight. Sometimes, we may not want to go to work, but isn’t it a great blessing to even have the job. To still have the same mission and goal, be moving in the same direction. And to be needed. To have been given a mountain to move so that perhaps it shows others that it can be moved. (Don’t quote me 😁I read that somewhere a long time ago and lo

Once again, I come to you with a prayers request. We do not know these children personally nor their families. I have gotten to know their little warriors a little bit through an online Neuroblastoma parent support group and how could my heart not be breaking as I witness what is quickly unfolding as their little warriors fight for their lives. I will post a brief description and photo so you can place them I. your hearts and lift them up and join our voices in asking God to please help these babies. I cannot stop checking their updates and thinking about them as both had traumatic events happen very quickly this week and out of the blue. Miles is about Charlotte’s age. I had messaged with his mom a handful of times over past couple months as they are in transplant and naturally have questions that some of us who have been there might be able to help answer. Sometimes, in this online group of parents who band together and help each other, we are merely an empathetic ear for each othe