And I quickly am reminded that 9 years ago, Paul and I were in the hospital
celebrating Mario’s life, only now, 9 years later, we are fighting for Mario’s
life…it takes my breath away like nothing I could ever put into words.
Mario started his last phase of weekly treatments 8 weeks ago. It has been a tough round of chemotherapy. Again, the goal was to stop those cells from even having the chance of growing and maturing into something that is abnormal. And, Mario really hit rock bottom a few weeks ago. This poor baby of ours had a spinal headache from the spinal tap that he had at the end of March. We are told that this headache is a migraine x’s 5. He truly couldn’t see straight. The pain knocked him off of his feet – and the doctors decided to run straight caffeine through his body to help surge some of that blood flow along – attempting to push that headache out of his body. Thankfully, it worked…but that headache was just the beginning.
In the days to follow
Mario endured fevers, multiple blood and platelet transfusions, ER visits,
Clinic visits, needles, bruising, and just feeling wiped out. He was one
sick little boy. And to my utter amazement, I was told that Mario was
coming through treatment beautifully. Other children endure much more –
and have many other complications compared to what our son was going through.
And, I found myself praising God for simple blood transfusions and
headaches. It was time to count my endless blessings.
So, as this phase of treatment rounded out – Mario regained his strength – and his body rebounded from the intense medication. It was on his birthday that I truly saw the first hint of him re-surfacing…I’m sure his countless birthday gifts helped to lift his spirit – and just to see the smile on his face was enough for me…
Paul and I are more than thrilled to announce that on Friday, April 27, 2012 our hero, Mario, started Maintenance. This means that Mario will now have monthly appointments and MOST of chemotherapy will be in pill form, administered by me, at home. He will continue on with spinal taps, always ruling out any cell looking abnormal. Mario’s most recent spinal tap, on 4.27.12 was NEGATIVE for cancer…praise God and all of Heaven.
So, we are on our own – much like bringing home a newborn baby. Panic has set in for me during the quiet, nighttime hours, and I find myself just staring at him as he sleeps. I constantly catch myself whispering prayers, and asking God for strength. Sometimes I just want to wake him from his sleep and take advantage of the time I have with him. And then I look at Gianna – as she sleeps peacefully, having no idea of the trouble her brother first encountered 8 months ago. For Gianna, she has voiced time in to two categories: When Mario had hair, and now, when Mario does not have hair. And how do I explain that to my children…how do I ever make it “normal” because the truth is, we will never really know “normal” again…as much as we will act it out and play it out, it’s always there…Leukemia.
I was overcome with emotion to learn that a little boy that Mario befriended in the hospital in March relapsed. I am also shattered to hear from a mom who I have become great friends with, that her 3 year old little boy has some abnormal cells in his bloodwork – and only the time in the next few days will tell if the Leukemia is back, or if the cells are a result of some medication that he has received. A harsh reminder that anything can change at any time – for any of us – we learned this lesson in September…
Mario will proudly tell anyone that he has 24 more days left without having to go to the hospital. He will proudly tell you that this time, when his hair comes in, it’s staying in. He will proudly tell you that he no longer cries when it is time to have blood drawn, and he will proudly tell you that he is going back to school this fall.
Mario will proudly tell you that he has mastered many video games over the past 8 months, he will proudly tell you that he is working on 4th grade math and reading at home with his teacher, he will proudly tell you that he can navigate through Children’s Hospital without asking for directions, and he will proudly tell you that he is known by many in the hospital – no one even has to ask him for his name, they just know him.
Mario will proudly tell you that his Leukemia is gone – now we just have to keep it away forever – and he will proudly tell you that he prays to God every day to keep his body safe and to help it fight off the bad cells.
Mario will proudly tell you his platelet count, hemoglobin count, white blood cell count, and ANC level. He will proudly tell you the medications he takes – and he will proudly tell you what time of the day he takes them.
Mario will proudly tell you that he has decided to be a doctor when he grows up – because he never wants any other kid to go through this illness, Mario will proudly tell you that he and I are best friends – and I will proudly agree to that!
Mario will proudly tell you he is a hero – a champion, and a fighter – and I know that everyone will proudly agree to that!
Thank you all for your love and prayers and friendship over the past 8 months. I promise to keep everyone updated as best I can, and we of course are always just a call or email away. I look forward to this summer when Mario can have friends over, and my guess is when most of you see him, you will be amazed at how much he has grown. He is to my shoulders…but trust me, I can still carry him and cradle him in my arms!!! He will always be my baby…
Please send up some prayers for Garrison and Camden. May God bless these boys and hold them in His healing arms. Please continue with your prayer for Mario – and please know, that I continue to ask God to bless each of you!
In God’s Healing Power, Jenn
NOTE: I would like you to also remember Steph’s husband in your prayers as he continues to battle cancer.