Our sweet JP was diagnosed with Acute Lymphoblastic Leukemia - ALL - on February 24, 2012. This is his story.

Friday, March 16, 2012

Dad's First Post

Written Sunday, February 26th:

Prior to writing this post I wanted to include a disclaimer that this is the first post that I have ever written and the circumstances couldn’t have been worse. I would like to apologize up front for the unexplainable feelings that I am trying to put into words. I am not sure how this whole blog thing works but I am just going to write from the heart and hopefully it will make sense.
For those of you who don’t know, on February 24, 2012, our little boy was officially diagnosed with Acute Lymphoblastic Leukemia. Cancer. This is the day that our lives changed. This is the day that I recommitted myself to be a better person.

CANCER. Cancer is a scary word. This single word can instill fear into the bravest person. This little word can make grown men cry. Yet my little boy has no clue what this word means. He has no pre-established fear of this dreaded word. He doesn’t know why we have had a “sleepover” in the hospital for the past 3 nights (and counting). He has no clue why all these strangers keep checking on him. He doesn’t know why these same people keep sticking him with needles (prior to the port (explained later)) and taking his blood. However, not once as he asked why. He is so trusting. He has not learned not to trust yet. What a sweet innocent little boy he is. This same little boy is now tasked with defeating one of the scariest words in the English language. He is not aware of the road that lies ahead but just of the journey he is taking today. Just tonight before Megan and Elsie left to go home to get some sleep, JP looked over to Elsie and said, “See you tomorrow sis.” These words almost immediately brought me to tears. Being in a hospital and fighting cancer has become his new norm. He is such a brave boy and he doesn’t even know it. I have to be strong for him.

During these past few days I have felt sad, angry, blessed, confused, worried, anxious, guilty, unintelligent, but mostly I have felt love. I have felt the love of family members, friends, ward members, co-workers and that of my little boy. In return I have felt love for all of the same people and have felt an enormous overwhelming amount of love for my son.

For those of you who may not be that familiar with our little family, JP and I are like two peas and a pod. Since the day he was born he has been the joy of my life. I have always enjoyed spending as much time with him as possible and feel guilty on days/nights where other activities take me away from him. We are so much alike. In addition to the fact that he looks like me, we like the same things (sports, cartoons, and goofing off). I am not so sure if that shows more of my character (acting like a child) or his (being mature well beyond his years). I am sure that the truth lies somewhere in between. My favorite thing about working is waiting for the day to be over so that I can come home. My little boy always greets me with a smile and says, “Daddy’s phone”. His little request is always accompanied with a big hug and a kiss. My favorite evenings are when he sits and watches a sporting event with me and we just cuddle and laugh. I love him so much. I know some dads who don’t express enjoying time with their kids but I have never been one of them. I love being a dad.

If you couldn’t tell I am not excited about talking about the last couple of days and my mind keeps thinking of happier times. I try to keep my emotions to myself and be strong for my family when they are around but when I am alone, like now, I tend to cry like a baby.

Megan’s previous post did a great job of explaining the events up to Thursday night before she and Elsie had to go home to get some sleep. I have had the privilege of spending the last few nights at the hospital with JP having our previously mentioned “sleepovers”. That first night was a night to remember. Within a half hour of falling asleep we were awoken by the nurse who informed me that JP needed another IV placed so that they could get some medicine into his body in addition to the blood transfusion that he was already receiving. I said OK and shortly after the “IV Crew” came in. The two of them appeared nice enough but the next half an hour would set the mood for the rest of the night. The nurse tried to place the IV in his right foot, then his right hand, then his left hand and then finally into his right foot (the other IV was already in his left foot). This event took about half an hour and JP screamed for every second of it. It broke my heart having to hold my boy down while he was going through pain. Each time a nurse came into our room that night he would say “no, no, no” because he thought that she was going to hurt him again. He fell back asleep but due to the transfusion he was woken up every hour to check vitals. The hour long “naps” were cut even shorter due to other interruptions for blood draws and his monitors beeping. I got up every time something beeped because I had no clue what was going on, not that I have a much better clue now.


The good news that came out of that horrible night was that the blood and platelet transfusion that he received had worked. His platelet count was now up to 53k, hemoglobin was up to 11.7 and his white blood cell count was down to about 15. These numbers were still far from normal but they had improved enough so that he could go to the operating room. In the operating room they would get a sampling of his bone marrow, do a lumbar puncture (spinal tap), and have a port installed. The doctors had to put him under anesthesia in order to do the procedures. We knew JP was in good hands but it still scared us to see him be rolled off. The lumbar puncture was done to extract some fluid to see if the Leukemia had spread to the spinal cord. At the same time his spine was injected with some chemo to fight/prevent the Leukemia from spreading to it. The port was placed into the left portion of his chest. The port is a stint that is placed under the skin and goes into one of the main veins going to the heart. This will allow doctors to easily insert an IV or draw blood without having to keep poking my little boy.


Megan and I waited patiently in the waiting room for about two and a half hours until we heard that JP was done with surgery. Megan was the fortunate one who got to go get JP from surgery while I waited anxiously in the hall. JP was rolled out of the OR on his bed and he looked completely out of it. He acknowledged that I was there but he was far from awake. JP received an Echo cardiogram while he was still waking up from the anesthesia. JP’s first statement after waking up was something to the effect of “I want TV, watch basketball.” Of course, I was so proud. The doctors informed us that the procedures went smoothly and that there were no major issues. JP looked miserable the rest of the day and mainly just slept the day and evening away. He looked so miserable the entire evening.


Friday night JP was to receive another blood transfusion. I had asked the nurses to do the transfusion as early as possible so that JP could get as much sleep as possible that night. They originally said that they would start around 8 or 9 and that he should be done by midnight. I thought that sounded much better than the night before. However, we were informed that the transfusion would not happen until midnight. JP and I went to bed around 11 or so. The next thing I remember was waking up at 3:10 to the nurse holding a lot of tubes and supplies in her hand. I asked her if we were going to start the transfusion soon. She informed me that she was just finishing up and that both JP and myself had slept through the entire process. She told me that JP slept through all of his vital checks (6 or so) and a diaper changing. I said thanks and went back to sleep. JP and I both slept until about 7:30 or so.


Saturday morning JP was JP. We laid in his bed and watched some cartoons, had some Fruit Loops (his current go to food), colored and played with playdoh all before Megan showed up at 9 or so. I was so happy to see that my little boy was back. He was no longer super pale and he was giggling and playing. He had a great time entertaining the two doctors that came in to check on him. They were both amused with JP used his oxygen cone to make “fart” noises by using his finger to block the oxygen from leaving the tube. They said that they had never seen any patient ever do that before. Needless to say but Saturday was much better than Friday.

The day continued to get better for JP. He had a lot of visitors come over and bring him some new toys. In addition to the usual visitors of all four grandparents and Uncle Matt he had my sister and her family, show up as well as Brooke and Jodie from the ward. They each brought JP a gift and he also received some pictures from his friends. JP was having a blast with the toy that Brooke had brought him but it was time to put them away and he was not too happy about it. He threw a mini temper tantrum and it made me so happy. What? I was happy with a tantrum. Yes. My little boy was still a little boy. He was now crying because he was two and not because he was in pain. I knew that this was going to be a good day. Later on in the day my mom and brother arrived with a gift from my Uncle Blaine. He had bought JP his very own iPad. What a lucky little boy. The iPad kept JP occupied for most of the day and I assume that it will keep him occupied for the many visits to the hospital that we will be taking over the next few years. Thank you Blaine. Later in the afternoon we received a visit from my BFF, Greg Foley, and his cute family.

For most of the day JP was himself. For a few hours he was allowed to walk around without being hooked to any machines. Of course, he could only walk around in our hospital room due to the fact that his levels were still too low to be around other people but it was still a minor victory. It is my assumption that the path to remission is full of dozens of minor victories. I look forward to every one of them.

I know that we are at one of the greatest hospitals for kids in the United States and that JP is in very good hands. I also know that we have felt the love and prayers of all of our friends and loved ones over the past few days. I am not sure how this will all work out but I fill comfortable knowing that we have a great support structure. So many people have offered to help out in so many different ways. We appreciate these offers and might, by the end of the trial, have exhausted every last one. I thank each and every one of you. However, I am also grateful to know that JP has a Father in Heaven who is watching over him. I know that JP is a special child and that he is loved by many. He brings a smile to almost everyone he meets. Even during these trying times when I should be the one who cheers him up, he is the one who cheers me up. I am so honored to be JP’s dad.

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