The beginning of this story...
July 23rd, 2013 would be the day of this story's start. We had Montessori Morning where a total of 7 cool kiddos worked together, played together and ate together from 9am-Noon. After that we had some rest time and then we had friends over that were getting ready to move to Alabama. Ainsley and her good friend were playing around and she fell on her bottom. She cried and said her bottom hurt and I thought she probably bruised her little tailbone. She limped a little and then was back to normal. I checked for bruising the next morning but she was okay no bruising and no more limping.
July 26th, 2013 my mom took my two kids to the local Kids Museum, the Wondertorium for the morning and then we met for lunch. While walking to lunch Ainsley stopped dead in her tracks and then started limping. She said her legs hurt, so we left and decided to rest at home after picking up some drive through lunch. She limped all day and I texted Chris to tell him how worried I was and I sent him a video of the limping. We talked about how she had fallen and thought maybe the injury had returned or that she could be reacting to gluten the way that I do, joint pain and sore muscles, or the other option of a four year old-growing pains.
July 27th, 2013 Ainsley was still complaining of leg pain and walking with a slight limp. I thought for sure it was growing pains because she seemed a little more tired then normal, ate well and actually agreed to a nap instead of fighting me off.
July 28th, 2013 The limp got better and Ainsley seemed to play more but I was still worried so I researched growing pains and it said for some children they could last a few weeks.
July 30th, 2013 I took Ainsley in to see a doctor and they were worried about her bruises on her shins and her enlarged spleen so they wanted bloodwork. We tried but she was freaking out and I was by myself, so I said I would come back the next morning.
July 31st, 2013 My mom and I took Ainsley in to the lab and they drew blood after digging around in her arms for a few tries. She literally was foaming at the mouth. The whole time I just kept telling her "you are safe", "it hurts but you can do this", "mommy and daddy love you". She got to pick out any thing she wanted from the store and ended up getting a SnowWhite doll with fancy shoes and some Circus Peanuts (those marshmallows that taste like bubble gum, they remind me of the late Bennie Hill my great uncle). Later that day I got a call from the Doctor. YOU DON'T usually get calls from doctors, red flags were flying. She said, well Ainsley's labs are looking kind of different so I am going to have the hospital lab check them. Some counts look kind of low and I want to tell you that could be bad news. I was like okay, should we not go on vacation. She says I will call you back when I hear from them but worst case scenario it could be lymphoma, leukemia, or a virus or flu. I will know in around 4 hours.
So for four hours I worried, I didn't tell my mom because she would flip. I called Chris and told him and we agreed that if it was bad we would sell whatever we could and go to Mexico for the Gerson Therapy to heal her before chemo or radiation because those would be last choice efforts in our book, we would rather do natural healing first then go on to more extreme measures.
After two hours the doctor called back and said the tests were back and she has some low platelets but it could be from the stress of taking the blood. You can go on vacation but come back and see us when you get back and if she gets fever or anything while you are away go to a hospital or a doctor immediately.
I was pissed. HOW dare you tell me my kid could be freaking full of cancer and then say well just kidding its not. FUCK. (don't worry I cuss sometimes to vent my anger/sadness)
July 31st evening: We praise the LORD that our child is okay and we head to Indianapolis to have a visit with Chris' family.
August 1st: We arrive. After an all-night drive we are finally there and we get to hang out and then take a nap at the hotel. We meet back up with everyone for a swim and then go to Chris' mom's house. Ains doesn't want to swim for very long but then George doesn't either so we figure it is the cooler weather.
August 2nd: We convince everyone to take it easy and go play at the park. Ainsley wants to swing for a bit and then ride her bike once, then she sits with the grandparents and Great Grandparents for the remaining time. Very unlike our active little gal. But we know she has an enlarged spleen and hurting legs so we encourage her to rest and just visit.
August 3rd: We visit the cat rescue that we see everytime we go to Indiana. It's a good cause and a cool place to really learn some wild cat info! http://www.exoticfelinerescuecenter.org/home.html
We cook out that night. We celebrate the George's birthdays, the Anniversaries coming up and we have grilled food and gluten free yummies. The kids play and we all just enjoy life.
August 4th: We go to church and Ainsley refuses to leave our side. After church we go to lunch with the entire family she eats some mac and cheese and french fries. Then we head to Auntie Mandy's house. George pushes the kitty around in a stroller and Katie brushes my hair, Chris visits with all the grandparents and his parents about cycling and Ainsley lays on the couch watching Katie.
Later that day we head to Ohio to visit my cousins family. When we get there we walk around their gorgeous new house and then head to a late dinner. We get to see the Ohio river and have some Joe's Crab Shack. Ainsley attaches herself to Eric and Kelsie my cousins kids that are 13 and 11. They love the attention. George tries out some crab and Ainsley chooses mac and cheese again. (We rarely have it at home so it's a new found fav)
August 5th: We all sleep in and take it easy. Keith makes us omlettes and Ainsley decides on scrambled eggs. She is still complaining of leg pain but it goes from one leg to the other. I completely think she is growing because she is eating well and still somewhat happy. Just touchy and sensitive and tired.
We go to IKEA to get things for my at home business and then I take the kids back to their house while Keith, Emily, and Chris go see the TREK bike shop.
August 6th: We decide to just rest. Ainsley eats and then sleeps all day. We watch movies and rest and then leave that evening around 5pm. We take some tylenol for the pain and get on the road.
Throughout the night there are storms that I have to pull over for, the sleep that I haven't had is kicking in and I pull over to sleep a couple hours. Chris drives then I drive then we finally make it home. Ainsley is to a point of exhaustion and pain that we have never seen before I think for sure she has the flu.
August 7th: She gets a fever. I think 'oh there we go, now her body can fight this'. It has to be a virus along with growing pains or a weird tailbone injury. We are supposed to go to the doctor but I cancel it because I want to see if she can get better on her own. She starts being super sensitive. LIKE a flu feels.
August 8th: Fever breaks and she is moving more but still complains when we touch her or George tries to play with her. Weird bruising shows up on her insteps of either foot and her palms of her hands. I take pics to document everything. She has weird red spots showing up too. I text my nurse friend throughout all this we are thinking she might have more then one thing going on and could be appendix. She reminds me to go to the ER if my mommy alert starts going off. Then it gets bad. I call Chris, he says he is almost done at work. I call him and say I think we should take her to the ER and they can do everything there to get rid of this thing. He agrees and starts home, we pack up some things and get George to Grandfather's house and take her in.
We get to the ER, get them the story of the journey here and they start trying to get blood, a vein bursts, she isn't foaming but she isn't happy. Thankfully, I knew the nurse Amber, that did the intake so it was comforting to have her there. I tell Ainsley to look at her pretty red hair, and tell her that one day her hair is going to be so red too, but maybe not as dark! They tell us she is super sick. They need to get fluid in and have to do it into her shin, into the marrow. They drill into my baby's leg and start IV fluids. They then tell us they are going to life flight her into ICU to get more answers. Do we want OKC or Tulsa? The nurse from my hernia surgery is there suddenly too, Judy. It's a good distraction to see another comforting face.
We choose OU in OKC because they did a pretty good job when we had to go there for George's birth.
Then it's "One of us gets to go, the other will have to drive". Chris makes some phone calls, then they say "no one gets to go just her". "We need to put her under now and send her off". We continuously are talking her through this, I introduce everyone who is touching her and tubing her and poking her. "This is Amber she is a nurse, she went to school for a very long time..." "This is Dr. M... he is a doctor of medicine he went to a school for a very long time to learn all about blah blah blah" Talking her through it not only kept her calmer, it kept me calmer, and it made the nurses and doctors realize they are dealing with a four year old. I kept asking what was going in, what was coming out, who are you, what are you doing, what are you thinking this is....
Finally, we say we love you and you are going to sleep for a little bit and then going to the hospital. They put her under and intubate her. She is then put on a stretcher, strapped up, and headed off on her first helicopter ride ever. Chris and I gather our belongings, walk outside and fall apart. We just held each other. I think Chris said "we can't lose her" and I said "I am so scared and so sorry".
We drag ourselves to the van. Roll down the windows, pray, and watch our first baby life flighted an hour away from us. This is the second time we have had to leave her. The first was when we had George almost two years ago.
We go visit our other baby George, he is soft and squishy and running around in a light blue set of soft cotton pajamas at our friend Tori's house. He smells so sweet and toddler like. Tori makes us some food for the road: peanut butter and jelly's, apples, and grapes, she makes us drink water and I nurse George and then we go to our house pack one night's clothes, a brush for Ainsley's bed head, and an outfit to take her home in.
Arriving at the hospital our baby is still intubated and getting her hair french braided by the nurses. She is hooked up to multiple machines that are beeping, and breathing, and squawking at me. The doctor has us explain our story, "tell me what happened" she says. I tell her from the tail bone fall to now. She tells us in the most calm warm voice that our little girl is "very sick". Her "symptoms point to leukemia but they are not certain until they can do more testing". She tells us the reasons why and then tells us she also has infections going on and multiple other things. We are keeping her intubated and sedated until her body gets better.
After paperwork and questions we walk outside and again, BREAK DOWN. No parent wants to hear the words "your daughter may have leukemia". But here we were. I've heard it twice now. Here we were> Parents that have a daughter that may have leukemia. Flashback, Back when I was 21, I volunteered with Arkansas' Camp Quality, a camp for kids with cancer and their siblings. I had a camper, Natalie Jones, who had ALL. And I said to myself back then, if I ever have a sick kid or a kid with cancer I hope they get this one because it's so treatable. NOW I am here. A 34 year old mother wishing I could trade places with my baby and let her be a kid, sing songs, run and jump and not worry about blood counts and urine and germs and cancer. FUCK CANCER. Can't this just be a weird ass virus or something that my breastmilk can take out?
August 10th: We got some more blood work done, they found some leukemia looking cells but needed more proof. Oncology talked to us. That is when I knew we were really dealing with it. CANCER, this could be CANCER. ONCOLOGY is here to see you.
Gerson therapy doesn't work with acute leukemia.... I pray she has something that we can treat calmly and with natural remedies. Please let it be a different cancer so we can be testimonies to Max Gerson's amazing therapies.
They tell us, it's probably acute leukemia.
We discuss chemo. We like the doctors and nurses here. Our insurance will cover most of the meds and procedures. We decide IF IT IS Cancer...we will stay at Children's hospital, unless something more drastic happens.
I miss George. He has NEVER been away from us this long. The longest was 10 hours while I took some grad school classes. I pump milk for him. I miss my babies. I miss sleeping with my babies kicking me in the head.
We will have to close my in-home business. I cry. My dream of finishing my Masters Degree and building a Montessori school in Stillwater will need to be put on hold. We will lose three years of supplemental income. And incur traveling and hotels and food and organic stuff to make her better... my mind is going nuts. How are we going to afford this.
Sunday, August 11th we got the confirmation. The flow cytometry results of her blood work confirmed precursor b acute lymphoblastic leukemia.
And we hear that word again.
And we pray.