Natalie Grace’s Journey

On 8.16.12 Natalie (3) was diagnosed with high risk ALL (Acute Lymphoblastic Leukemia). We HOPE for SUPPORT, but we’re also here to EDUCATE and INSPIRE!
The support and LOVE we’ve been receiving in regards to our daughter Natalie has been overwhelming, so THANK YOU to everyone who has been there for our family…we will NEVER be able to say this enough, or be able to fully express the enormity of our gratitude!

That said, I need to start off by saying Natalie is doing AWESOME!! We are “fortunate” that of all the cancers out there, Natalie was diagnosed with ALL (AKA, the “good cancer”). While it’s no walk in the park, and she’s still fighting the good fight….we are fortunate in knowing that there is no doubt, she’ll be coming out stronger on the other side. In fact, we were even given an approximate cure date of Natalie being cancer free in the vicinity of November 2014. I know there are no guarantees in life, anything can happen…but the fact that ALL is the most common and treatable pediatric cancer makes us believe whole heartedly that she’ll one day be rid of this nasty disease! DO NOT get me wrong, there are many families struggling with ALL who again, are not as fortunate as we are to be in this cure rate bracket…but I wanted to make Natalie’s prognosis clear out of respect to all of the families out there who have battles and struggles far past our own! People tell me they don’t know how we do it, how we stay so strong. Honestly, I don’t know how THEY do it…I don’t know how THEY can be so strong when they don’t have the same luxury that we do in knowing our little girl will get past this. Truthfully, I don’t know if we’d be as strong as we are if we didn’t have that November 2014 date to hold on to. These other families deserve all of the real respect…they are the warriors (as is our Natalie), and that is the truth!!

All of this said, while we recognize our story and struggle may not be as challenging as others…we wanted to create this page and share our experience regardless, because at the end of the day Natalie is our little girl, and she is still putting up a fight, having to deal with pain in a way NO child ever should. In addition, this page is not meant to be solely for the benefit of my family, it’s not just a place for people to check in, leave messages, and see how she’s doing. While I will most definitely be updating on Natalie regularly as I always did on my personal FB page, and while I look forward to having everyone’s continued love, support, prayers, and good light…I want this page to be more. I want it to also be a place to educate, as well as to share, love, and support other families going through this as well. I can’t tell you how often I’ve been on other blogs and FB pages (created by parents for this similar reason), where I’ve either learned something new about pediatric oncology, have gotten some needed support and guidance, or simply have been inspired by something that they had posted. We want to be able to do the same…we want to do our part and give back in that same capacity. So if by sharing our story, or someone else’s page, or even by promoting an organization making an enormous difference…if all of this can help just one family (and hopefully more), well then it was worth its creation.

OUR STORY

Natalie is 3 years old and was diagnosed with ALL (Acute Lymphoblastic Leukemia) on August 16, 2012. I’ll never forget that day.

The Friday before, my husband and I were getting ready to leave for Cape Cod to enjoy a nice weekend away celebrating the wedding of one of our closest friend’s. While smooching Natalie goodbye I noticed a few tini-tiny red dots (smaller then a pin top) next to her right eye (see Album labeled Natalie’s Symptoms). I’ve seen those markings before as in the past they’ve tended to show up right before she was to get a fever. I now know the medical term for those markings, petechiae (red or purple dots caused by bleeding into the skin; AKA a broken blood vessel). The next evening while enjoying the wedding reception I received a call from my parents that Natalie had a fever of 101 (nothing crazy for a three year old). The next day as we were heading home from the wedding I spoke to my parents again and they told me that she still had the fever, was a little out of sorts, but for the most part seemed in good spirits. We kept her home from school on Monday, but when she still had the fever on Tuesday I had my husband take her to the pediatrician. All looked good with her examination so they told Dan that she had a “summer virus” and we’d just have to wait it out as the fever could take a few more days to dissipate. Wednesday morning there was no change except for the fact that she didn’t want anyone holding her to put her down (emotionally, it was VERY difficult leaving for work that morning), she wanted to be carried everywhere. When I got home from work that evening I noticed that her right eye not only looked very slightly swollen, but that she also had a small broken blood vessel in the white part of her eye. Additionally there was a subtle amount of blood mixed into the mucus of her runny nose, nothing major, just some thing that dry air might cause. I decided then that I would take her back to the pediatrician the next day.

My thought was that I’d drive into work (NYC) so that when I heard back from the pediatrician I could leave early to take her in. It kills me now when I think about those few days when all I wanted was to be the one home taking care of her, and yet I continued to go into work in fear of what co-workers or “others” would say (but that’s a whole other issue for another time). In any regard, before leaving that morning I noticed a very small bruise in Natalie’s hairline that struck me as incredibly odd (see Album labeled Natalie’s Symptoms). Whenever anything medically related happened to the girls, I’ve always taken out my camera immediately to document exactly what I was seeing (sometimes even the video if a still photo couldn’t give it justice). Call me crazy, but I can’t tell you how helpful these images have been when talking to doctors (for both of my girls past illnesses), and how many times they’ve thanked me for the pictures. Anyway, I called and left a message for the doctor on my way into work and had literally just walked into my office when my pediatrician returned my call. I started to describe Natalie’s new symptoms from the past 24 hours and she in turn calmly asked that I bring Natalie in immediately to be checked out.

Of course my mind ran in a million directions as I raced home to pick Natalie up, but as a parent I think we all allow our minds to go to those scary places from time to time…so I’d in turn tell myself that all was fine and this is simply a precaution. When we got to the doctors she took some blood and said they’d know more in about 10-15 minutes. A half hour later my doctor came back and explained that she needed me to take Natalie to the ER as her blood wouldn’t read on their machine, a good indication that something could be wrong. The thing is, I can remember in explicit detail that very moment like it happened yesterday. The doctor wasn’t sharing her thoughts of what it could be, but I could see EXACTLY what she was thinking, only I didn’t want to ask a single question because I didn’t want to hear the answers I knew she’d give. Instead we shared a silent conversation over the period of about 15 seconds. Natalie fell asleep the moment we got in the car and I wept the entire trip to the hospital. Once again I went to those scary thoughts and once again I pushed them aside. When we got to the ER they took her immediately and drew some blood. In that moment, I thought having to pin her down with my body so that they could do that was going to be the worst of this experience, unfortunately I was wrong.

Once they got the blood they needed I held her while she slept, and at this point Natalie’s eye was so swollen it was completely sealed shut (you couldn’t even see her eyelashes). In fact while I was waiting for the results of the blood work (not knowing what exactly I was even waiting for), I felt what I thought was drool running down my arm. When I gently pulled her away I saw that it wasn’t drool, it was blood running out of her eye. As quickly as I could hit the call button, in walked a group of people. When the first woman was introduced as a social worker I started to cry. I don’t remember much of what was told to me in that moment…I just remember repeating the words, what’s wrong, over and over. Then of course the cancer bomb was dropped. They asked me if I had family near by, if someone could come to be with me, if I wanted them to make calls…I mean what the hell was happening here! The first call of course was to Dan who naturally was also in complete shock. He started to choke up and had his own words of repetition, “are they sure?” He left work immediately (over an hour away), and while I waited for Dan to arrive I began to make the calls to our parents. Throughout it all Natalie slept.

From that point on it was a whirlwind, and the waiting game had begun in regards to what kind of Leukemia Natalie had…ALL or AML, the difference being extremely important. While having ALL is far from easy (it’s a long, challenging, painful road), in most cases when caught early it is treatable with an end date in sight where as with AML the challenges are far less predictable and the road completely unpaved. A few hours later they were able to inform us of the “good news”, that Natalie had ALL, the “good cancer.” We were grateful for that, but having only been a few hours into all of this, we were still scared and confused as hell.

Natalie’s journey began immediately. The doctors explained to us that she needed surgery to implant a port that would allow them to easily access her bloodline during the duration of her treatment. However in order to do that safely, they needed to regulate her platelets and hemoglobin (her platelets were 9000, should be 150 – 300 thousand; and her hemo was 6, and should have been 11 – 13gm). First she was given frozen plasma, then platelets, then blood. By approximately 6:00am on the 17th her body was ready for the surgery and by that afternoon they had implanted her port just below her right shoulder. I remember holding her as the anesthesia did its work, then having to lay her on the table and walk out of the room so that they could start the procedure…it was extremely painful having to hand her over and wait…but now almost five months into all of this (wow, I can’t believe I just typed that), what a BLESSING that port is.

Those first few days in the hospital Natalie did nothing but sleep, and when she was awake she would cry, whimper and just ask why. I do agree with the doctors that it’s better that this happened when it did (meaning her young age) because as they’ve pointed out, when they talk to their three year old patients years later…they don’t even remember what they went through. However the only bad part about it is the current day to day where I can’t explain to her what’s going on. I mean finally, I feel like we’re at a place where she knows she’s sick and therefore has to visit the clinic and hospital a lot…but she doesn’t know why (and she’s stopped asking). I try to explain the best I can to a three year old, but as you can imagine it’s challenging. As I said we’re all in a MUCH better place then we were a few months back…I feel as if we all have a handle on this now, but man I can’t wait until it’s all over for her…she doesn’t deserve this, and if I could, I would take it from her in a heartbeat.

Natalie was in the hospital for about a week getting better with each new day (unfortunately, some families can be in for months at a time). And we were all THRILLED the first day she was able to open that right eye. In fact, she was so scared to open it that she kept a washcloth on it for a while, as if it was her little safety blanket. Going home was great, but it was hard. It was difficult starting this “new” life…one day I was a working mom, the next I was a stay-at-home one caring for a sick child. It’s a disease that takes its toll on everyone, not just the patient. Life for Hannah (our five year old) has been completely turned around, and in the beginning she was a HUGE challenge. There are so many aspects to this disease that you’d never think about…so many things that change once you’re in it.

Little by little I’ll recount the past few months on this page for those of you who didn’t have access to my personal account. And as mentioned above, this page is meant to not only update everyone on Natalie’s treatment, but also to educate, and inspire. Thank you for taking the time to be a part of our community!

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