How do I start this post? Why should I write this? How do I begin? I have started it fifteen different ways and no beginning sounds right. How do I convey the idea of worry, love, fear, terror, worry, faith, misery, disease, illness, family, children, husband, work, ANC, blasts, AML, chemo, prayer, worry, food, cleaning, bugs, worry, environment, sunscreen, dish detergent, hormones, CANCER, baby, child, love… everything…. into words?
I guess I will start at the beginning.
On February 4th 2012 my younger sister, Mandy, called to tell me my youngest sister, Tatum’s, water broke at work and she was taking her to the hospital to have the baby! I desperately wanted to go, but it was rainy, cold, and I was having severe back pain and just could not fathom getting out in the cold to go to the hospital and stay up all night….. it did not help that I was also very heavily pregnant. I decided to go to bed and told my mom, dad, and sister to please call and keep me updated on the progress of the birth and I promised I would be there first thing in the morning. I went to bed, or tried to, and woke up at 12:30 am with a terrible pain that started in my stomach and radiated and settled in my back. After an hour of this I woke my husband and told him it was time for me to go to the hospital; not to bring the car seat, because I did not think I was in labor, but wanted to get checked out. heh. I called my family, who was already at the hospital, and told them I was on the way. When we arrived my sister had already had her epidural and was resting happily in her bed surrounded by everyone. I wanted anything to take away the pain. After I checked in the nurses did their assessment and to my astonishment I was 9 cm dilated and 100% effaced. I was having my baby too! Imagine that- two sisters having both of their babies (both girls) at the same hospital, with the same doctor, on the same day! What are the chances?
The night progressed and at about 2am my mom came in to tell me that my sister had started pushing! At 3:46 my niece was born. I was three rooms down and could hear her crying. She certainly had a healthy set of lungs! After her initial assessments were done her nurse brought her in to see me. She was swaddled, red, and as cute as a button. I held her and immediately fell in love. I was the first person to hold her besides her mom. Fast forward to 6:43 am, my daughter was born! They were 3 hours apart.
My niece, whom I will refer to as “Doobey” because I will sometimes call her that, was a loving little baby. She was addicted to her mom and cried (very, very loudly) when someone other than mom took her. I often referred to her as a “spirited” baby because of her vocals and sensitivity. As she grew into toddler -hood her personality evolved. She loved to scream, VERY loudly, to get attention, and, thanks to a wonderful family trip to Tennessee, she became “socialized” and finally let someone other than her mom hold her and play with her. We took a similar family vacation this past summer to a lake in North Carolina and she was a changed child…. happy, talkative, and loved playing with her “aunties,” uncles, and cousins and grandparents.
This picture was taken at Douglass Lake, TN: she was becoming socialized with “Poppy”
Our family vacation this past summer in NC:
I like to think of this past summer (2013) as a turning point in our family. In June my other sister had a Father’s Day picnic at her house- the allergens were at an all time high and Doobey, who had been battling a cold, really got sick at dusk. The summer progressed and she fought the occasional cold, got over it, and then moved on…. however around August we started noticing a slight change in Doobey’s face. The left side looked a little different, maybe lopsided? swollen? not symmetrical with the other side of her face? Another change: she developed a terrible diaper rash. Not your run of the mill red rash, but a swollen, blistery, horrible rash. We blamed my sister for not changing her enough (God forgive me). On the way to her 18 month appointment she threw up in the car. Carsickness? She never got car sick before?
We started noticing the facial difference at about this time (late July)
The Doctors prescribed a diaper rash ointment (which helped a little, but did not clear the rash completely- we still blamed my sister and brother in law), and in their assessments, initially, did not seemed worried about the change in her face. My sister took her again to the doctor to examine her face; there were many options; a cyst, bone, cherubism, something else I can’t remember, or maybe… bone marrow. They sent her for an x-ray and also recommended her to an allergy specialist. The x-ray came back showing “something” and the allergy appointment was made. This was the third week of September. That Wednesday I went to pick my son up at the babysitter (who also watched my niece). When I got to the babysitter’s house Doobey was sitting on her lap. She looked very pale, and did not come to me and greet me or get excited. I found this to be very odd. The babysitter and I had many discussions about her face and her sitter consistently said something to the effect that she thought the difference in her face was caused by a cyst, or something of that sort. On this particular Wednesday, she told me Doobey had bitten down and cried hard, and that she was unusually lethargic. She was also extremely pale, so pale she looked grey. I held her, gave her a kiss, and left with my son. When I got in my car I immediately called my sister and told her she or her husband needed to go pick Doobey up, she was not herself, and looked terrible. My brother in law picked her up. When she went home, she went to bed at 6:30 and slept like a rock until my sister (her aunt) went to check on her at about 7:30/ 8pm. When my sister roused her she was very lethargic, and, had not had a wet diaper since 11 that morning. Weird. The decision was made: she needed to go to the ER. My mom, sister, and brother in law took her in. I went to bed and anxiously awaited the news.
I woke up at about 3 am and it was my mom. She simply said, “leukemia.” I simply said, “no.”
I couldn’t sleep. I couldn’t think. I told my husband. I called my dad. I was in denial.
I finally went into a very restless sleep and woke with my 5:30 alarm. I couldn’t go to work. I had to go to the hospital. When I arrived I found about eight doctors outside her door (this scared me) and when I went in she looked like this,
At this point we did not know her diagnosis or prognosis. The team of doctors came in and examined her and told us they would know the type of leukemia that day and then go from there.
That night this came in:
-she was diagnosed with AML (acute myeloid leukemia)
-her prognosis (chance of cure) is 40-60%
-leukemic cells were found in her spinal fluid (moved into the central nervous system)
-her blasts (bad cells) were taking up 81% of her blood
What did it all mean? The normal childhood leukemia is ALL. this has a 90% cure rate. Doobey has an “adult” leukemia. At diagnosis she was 19 months old. She was listless and pale because 81 % of her blood was leukemia. She was dying and we didn’t know it. If left to go on any longer she would have died. Why couldn’t her pediatricians have found this sooner? They said this leukemia presented itself in a very unusual way. Not normal for a baby. Not normal for a baby? That is because the BABY has ADULT leukemia.
I cried every day, I think every hour, for three days. If you know me personally and saw or talked to me within that time period I cried to you. Every time I thought of her, looked at my daughter, saw a picture, said a prayer I cried. My mom, middle sister, and I also went through various stages of grief: denial (is this REALLY leukemia?), grief, and now, finally, we have accepted it.
She started chemo therapy. Her plan of action was to have 5 rounds of chemo: the doctors let her blood get to a certain level then pump her full of chemicals (therapy) to bring her immunity down to O, meaning she is at the mercy of any and every infection possible. Then they bring it back up, then they take it down again. It is a roller coaster of treatment and recovery. She is currently in her last round, but when she is done she will still be immune compromised for six months (at least) and will be in and out of the clinic for another five years, and every year after that for the rest of her life. I pray to God all the time (even right now) that the cancer does not come back, and that she will be going to a doctor until she is 100.
A lot has happened in the past six months. She has had a few complications, but she is hyper, curious, and meeting all of her developmental milestones. She is bald and skinny but funny and social, and very loving.
As for my sister, I don’t know how she handles it. I don’t think I could. She is a rock. At 2 years old Doobey is the strongest person I know. My sister is the second strongest person I know.
Did you know that AML has a trigger? Just like a gun, the cancer was in her body, waiting for something to ignite it. WHAT COULD HAVE TRIGGERED THIS. The only absolute known trigger for AML is a chemical called benzene which is found is some paints.
WHAT CAUSED DOOBEY’S CANCER?
Now- I find myself asking many questions.
Was it her diapers, food, sunscreen, diaper ointment, cleaning supplies my sister used, insect repellent, mold, hand washing, hand sanitizer, lotion, perfume, dish detergent, the air conditioner, the gas logs, lakes, swimming pools, Walmart yogurt, fruit, dirt, trees, oxygen, wood, bugs, insecticide, laundry detergent, furniture polish, wood buffer? WHAT WAS IT?
I have always believed in eating organic and using non-toxic products to clean my home, but since this diagnosis I am a fanatic. I use everything non-toxic I can think of on myself, my kids, my home (if you know me then I have probably asked you what products you use: everything from your face to your home wash). I do this because something caused her leukemia. Something. I do not mean this conclusion to be a lecture, but I do hope we are all aware of the toxicity of our environment.
Thanks for reading this post. I still don’t feel like I said everything.
Have questions? Leave me a comment.