Alexa’s Calling

Alexa Marie Sanner is the bravest, most courageous, sweetest, amazing, mysterious and strikingly beautiful little angel to ever touch down on this earth. Alexa came into this world so perfectly, in fact I slept through the majority of my labor with her and frequently commented on how beautiful giving birth to her was and how much I loved the experience. The next thing in line was showing Joshua his new sister who he could not wait to see, he was ecstatic! As soon as he laid eyes on her he was really in love, he loved my belly when I was pregnant, it was a daily routine him and I had, while I lotioned my belly he gave kisses and told his baby sister he couldn’t wait to see her. We went through a list of about five names that we liked and every morning when Joshy and I spent time adoring my belly we would call her a few different names to see what sounded right. Well Daddy made the decision really easy one day, I heard him talking to Joshua from another room saying “I’m going to have a Joshua and an Alexa!” and as soon as I heard her name come out of her Daddy’s mouth nothing sounded more beautiful. So Alexa Marie it is. And the very first day Joshua saw her he began to call her “jawexa jarie” I will never forget that. So Lexi came home and of course didn’t like to sleep at all, she never even wanted to nap as a newborn, cat naps is all we got. Thank God, more time for her and I to adore each other and her brother and her to fall head over heels for each other, which everyone who knows Joshua and Alexa knows for sure the amazing special bond these two have. So we made it to Christmas and her baptism at the end of January 2011 and that was the last of our lives being “normal”. In the beginning of February Lexi started to have  a fever and diarrhea so I took her to the Dr. and of course, it’s a virus. So that cleared up, or did we think it cleared up? My little sweetheart heading into march was not herself. She had just begun to eat solids and we started on carrots, sweet potatoes and squash. She did really well, only for a couple of weeks, then I noticed a small spot of yellow on her brow bone, I figured it was from her bumping a rattle on her eye although I wasn’t convinced. So I asked the pediatrician what they thought, “oh yeah, looks like maybe she did bump herself”. Huh, huh, huh….so our journey begins, I’m a Mom, and a damn good one, I must say, I fought Dr.s for weeks as my daughters eyes continued to become more and more shaded yellow like a bruise that wasn’t taking the course a bruise takes, it was like yellow eye shadow all over her lids and brow bones. Two weeks later, I’ve got the entire Milford pediatrics looking at my daughter as if she was some sort of science experiment, they are clueless. Why are they clueless? I typed in google, “bruising of eyes” and what comes up, “Neuroblastoma” at this point I’m really scared and I know in my heart what is going on and the professionals examining my daughter have no clue, they told me, it’s carrotenemia from eating too much orange foods. Are you kidding me? OK, so I argue and cry, while at Lexi’s appointment and I get be-littled and ridiculed, “why are you so upset” said the Dr.  Well I knew why, something was terribly wrong. I demanded the Dr. send me to Yale for bloodwork, finally we go. I find out later that day Alexa’s hemoglobin is down to a 6. something. But they want me to “wait” before I do anything drastic, like take her to the ER at Yale, well I was already on my way with my husband when the pediatrician calls to convince me I could wait and I didn’t have to do that. I got to Yale, told them my daughters blood work results and they were floored that I wasn’t sent to the ER. So the nightmare begins, and now my stomach is in knots as I type. Im stopping for now. I can’t do this all at once. 1/18/12

So we spent the night in the ER, the first thing the ER dr. said to me is “im going to talk to you about something you are not going to want to hear right now, but you may have already read about, bruising around the eyes usually means a cancer called Neuroblastoma” I told him I already knew what he was going to say. By then I just felt like I was in such a dream, it’s true, the world just is going on and you are just going through these motions with your life flashing before your eyes. After a negative chest x ray, the next up was CT scan of Lexi’s head, Josh went in with her, and about 10 of us were in the ER until about midnight, when Josh, Lexi and I got admitted. I knew once we went there we were not leaving. And we didn’t, for one month. AT about 4 am that night a Dr. woke up my husband and I and brought us to a room, since we were sharing a room with another family. They found a mass in your Daughters head. “What?!” I just grabbed Lexi, held her close and told her everything was going to be ok. Josh was losing it, and I remained calm, calm in shock that is. I called my family and couldn’t believe the words coming out of my mouth, “they found a mass in her head”   She is 5 months old, what are they talking about. So our lives spiraled out of control before our eyes. We are not in control, we are only lucky when we feel in control. Remember that.

So right before my eyes they took control of my daughter and the destruction they would cause to her body. First up was a surgery, an occiputal biopsy from the back of her head, which they removed a piece of tumor for biopsy, they said it would be a small incision, when it actually went half way up the back of her beautiful head. It doesn’t matter because she healed up beautiful and always had the most gorgeous round head. Also her broviak was placed, a central line for chemo and blood draws. Little did I know my daughter would have to live with this rubber line coming out of her body for her entire life, robbing her of regular baths and swimming for the one summer we had with her. She just learned to live with it but it stinks I couldn’t just kiss her all over and leave her naked. We always had to hurry up and tape it up and get a onsie on so she couldn’t pull at it. Lexi went through all in all 11 rounds of chemo, 3 major surgeries, numerous blood transfusions and 3 bone marrow biopsies also so much sedation and so many mri’s, ct-scans MIBG scans PET Scans, x-rays, ultrasounds, hearing tests and so on. Not to mention, being hospitalized for one entire month in April, One week at a time for a couple of her chemos, and one entire month in October. All in all, She F****** hated Yale. I hated it too. Lex did amazing through all of this, in August she had a laparascopic surgery on her abdomen, which was awesome, they originally told us she would have to be cut across her belly. So after I got to her in the recovery room, she was glowing, the prettiest little thing in there, and all of the Dr.s agreed. I called her my Bikini baby, I was so excited she would have no   scar at all. She was WAY too pretty for scars. So they biopsied this tiny, tiny little piece of what they thought might be tumor, and it came back as fatty tissue, no tumor detected. I fell to the ground and screamed and cried Thanks to God for this amazing news. The Dr. told me word for word in an email “we are certain that we got the remnants of what was left so this is great news”  They told me Lex was clean at that point. Well they lied, she still had her last two rounds of chemo which they would do anyway as a precaution to make sure we really got everything, and after her last day of Chemo on 9/14/11 I left the clinic with a different little girl. Lexi was really feeling bad, wasn’t talking, playing, just sitting in her stroller like I had never seen her act before through all of this. Two weeks later she was throwing up, I took her to clinic and they said “she looks relatively well” and sent me home saying its a “virus” again!! Dr.s don’t know their ass from their elbows, so when you get told your child has a virus, beware. 2 days later I rushed back to clinic with her, I noticed her eye crossing, then when I got there, I, me, not the Dr. said can you please check her eyes, one is not dialating. They would have never checked her eye if I hadn’t said to. Of course I knew something a long time before they did, we had a CT scan and the tumor in her sinus was back. Go figure, even oncology doesn’t check your child right when they know she has cancer. I later found out as I read a scan from the beginning of August that there was still a “soft tissue mass” in her sinus area, it clearly states that on one of her scans but they decided it was probably dead tissue. Huh, really….guess what they were wrong and they cost my daughter alot of pain suffering and even loss of vision, but by the grace of God after I said my prayers one day and begged for at least her vision, she could all of a sudden see everything within hours of my prayer. So Lex fought through 2 more chemos which showed no response. Then we stared radiation, so sickening I don’t even want to think about it, every morning she went under anethesia, EVERY MORNING!! Just imaging bringing your child every morning for what was going to be a month long from Thanksgiving until Christmas, no food after midnight, when she barely would eat anyway and sometimes it was the only thing that would sooth her, then watching her get put under, into a special brace with a mask over her face marked for radiation. I’m sorry but WHO ON EARTH SHOULD EVER ENCOUNTER SUCH A NIGHTMARE? And I’m not talking about me here, that is my daughter we are talking about, my precious baby, who I bore in the womb, who I adore and gave birth to, who I have dreams and hopes and a future with, who I vowed to always protect from harm and promised to make sure all would be okay and I would never leave her. I knew Lex was climbing closer to God and the Angels when for weeks she was looking up grabbing at the ceiling or the sky screaching in excitement, “what are you looking at Lex, why are you so excited” I would walk across the room as she reached at something…. I knew it was Angels, I just didn’t admit it, I knew she was leaving, I just tried to soak in every last moment I could, I actually decided about a month before Lexi left that I wasn’t praying for a healing Miracle, but I was praying for RELIEF, relief for my daughter because I couldn’t bear to see her in pain and suffering anymore. I will say for the rest of my life, Just to put in perspective for all of you how bad it really was, that each day that I wake up without Lexi on this Earth, is not worst than those days that I had to watch her suffer and I could do nothing. God saved my Angel, God answered my prayers, Alexa is now in a beautiful paradise, beautiful heaven, and because of Alexa, God is real in my life, and I would have never gotten this close to God if it were not for Alexa. Yes I am so Angry and have so many questions, but my struggle will be to get past those questions and trust God, not question God. We are here for such a short amount of time, but it’s time for us to be judged by, and I for sure am devoting my life to God, because I am going to be greeted at heavens gates by Lexi, and God knows I Can’t wait!!