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Tuesday, August 31, 2010

Day Six- Going Home

The first time I brought Ella home from the hospital.
Ella woke up and asked if this was the day she was going home. Then she wanted to know what time! She has a port put into her chest today that allowed her Dr. to access her blood without sticking her each time. She came out of surgery really well. As soon as she was awake enough, she asked for noodles! Then she asked if they could please disconnect her so she could put a dress on- purple of course.-That's my girl!

We got great news today- there are no more visible blast cells in Ella's blood. This is a good sign that she will be a "Rapid Responder" to chemo which means=REMISSION! I am afraid to be too happy about this, but hey- for today it will do!

We brought her home around 4.30 today. We pulled up to the house which was adorned with balloons and signs from our wonderful friends and the kids I work with at church. I still feel this overwhelming sense of love. And at times, I honestly FEEL like people are praying for Ella. This picture was taken by Steve, the day that Ella was born.

We have all her medications lined up and spent part of the night just trying to translate them from generic names, to the names the Dr. told us, to when they need t be given. My 4 year old would rather eat carrots all night then be forced to take a mint flavored medicine, but she is getting there- we are getting there.

I don't cry all the time anymore. It seems to be the little things that set it off. I moved a piece of her hair out of her face when she came out of surgery, and I had to stop myself from heaving with tears over the loss of her hair. I went into her room and cried as I had to move her toys to make room for medical supplies. I tried to keep it hidden in a drawer so she doesn't have to see it. I still want her room to be that joyful place I planned for her while she was still in my belly. I held back tears when I tried to tell my friend she will be okay. I don't know who I am trying to convince more- them or me.
For today, I am grateful that she is snuggled in Her bed, with her blankies, and softly breathing in and out as I watch her sleep. I thank God that I can still watch her do this.

Monday, August 30, 2010

Day Six-Speaking A New Languge

Ella did great today. She went into the kids play area and did crafts. She also took a bath which was the first time in 5 days. She had to get two shots that went into the muscle of both her thighs. We kept her very distracted and they put a numbing cream on her thighs before they did it. Ella now hates band aids, at least when they are coming off.
Ella's counts were good today. Her reds were up and her platelets were good.
Steve and I are learning a new language- Cancer. We know almost all the acronyms for all the tests, meds and doctors. It does help that Steve and I learned a lot though a friends experience earlier this year, one of my best friends. She was diagnosed with Colon Cancer in August of last year. I can't believe it has been a year already.
Tomorrow morning Ella gets a Port inserted into her chest. This will allow the Dr.'s to access it for chemo every week. Ella will get chemo every week for the next 4 weeks. How she responds after the first 4 weeks will determine how often she goes for the next 8 weeks after that.
Today was a pretty good day.

Sunday, August 29, 2010

Day Five-Chemo is working

Ella is nauseous and threw up last night. They put her on an IV to keep her hydrated, and she slept so hard we had to change her PJ's 3 times because they were wet. I guess the chemo is working.

I went to pick up the start of the prescription she will have to have daily for the next two years. The pharmacist asked me if she has any major medical conditions. I replied "Besides the Cancer?" I guess I was assuming he should know by the stack of scripts I laid down next to him.

Steve is with her as she sleeps at the hospital. She is an expert all the games marked for 4 yr olds in the kids room. She is wearing a purple tutu today and an IV. We have names the IV pole since it has to go everywhere with us. We have aslo assigned a stuffed animal to sit on top of it.

I am sure all mothers do this, or would do this if they were in my shoes, but when they told us it might be Leukemia- I prayed. I asked God to please let me switch places with her. Please let me be the one that has to go through cancer and chemo treatments- not my baby girl. Let me be the one to vomit and lose my hair- not my baby girl. Let me be the one to lose the next 2 years because I'm too sick to go to school or play with my friends- not my baby girl. My 4 year old baby girl.
How do you tell your 4 year old, that loves to wear nail polish and put piggies in her hair- that she is going to lose her hair? It's not fair. I hate it and it's not fair. Cancer Sucks. First it took over one of my best friends lives- now my babies. Today- I'm pissed. Why can't life be fair?

As soon as she is better we are taking her back to her favorite place- Myrtle Beach. Hell, everyone can come.

Saturday, August 28, 2010

Sincere Thanks

Thank you to all our friends and family. Ella received many gifts and cards today that helped to keep her busy throughout the day.
We feel so blessed and so loved. Thank you so very much.

Day 4- The Waiting Day

Today we feel like we are just waiting. Waiting to see what kind of effect the chemo has on her, waiting to see the Dr.'s, waiting for the day to be over.
Josh is happily being spoiled by Grandma,Grandpa and family. Daddy stayed with Ella last night and they did great together. She only woke up once and didn't have any side effects from the chemo. Gratefully, I stayed at my girlfriend Kate's last night and slept for about 12 hours. Steve is going home tonight to rest take a deep breath.
Ella's white count went down to 1.3today. Which is good. We want it to be 0 so we know the bad cells are dying. here is some information about A.L.L.:

Acute lymphoblastic leukemia (ALL) is a "liquid" tumor or cancer of the blood that starts in the bone marrow and spreads to the bloodstream (the term leukemia comes from Greek words for white and blood). ALL is the most common pediatric cancer, accounting for 35% of all cancers in children. There are about 7,000 new cases in children and adolescents (birth to 21 years of age) in the United States each year.

Friday, August 27, 2010

Day Three- pic line

The thing about a teaching hospital is that they have the latest technology, and whenever the doctor walks in the room, there are 4-6 students hanging on his every word and not looking you in the eye.
This morning Ella had a pic line put in. She had to go under general anesthesia for the procedure. She cried as soon as they moved her bed out of the room. She knew that if we were leaving the room on the bed, it wasn't for a fun reason. She cried all the way down to the procedure room and until the medicine took effect. Steve and I sat in the waiting room. This is a place in the hospital where 5 minutes seems like an hour. She went through the procedure and came out great. No nausea or anything. She is such a trooper.
Second round of chemo starting now.

Day Two- The Diagnosis Confirmation

Ella woke up this morning crying. She would only say "I want to go home!" I felt the same way. At 9am they had me carry her into the treatment room. They do all the "Treatments in a small room FILLED with medical equipment. It scared me, so I know it scared her. She just held on to me and hid her head in my chest. She asked me to sing to her. Our night time song is Sentimental Reasons. I sang to her until she was asleep. I had to leave the room as they did the Spinal Tap and Bone Marrow Aspiration. The thought of them drilling into her hip- I just didn't think I could keep it together in front of the 4 students watching the procedure, the nurse, technician, and Dr.

I stepped out of the room and lost it. My body actually heaved. One of the nurses came over and held me. The staff here has been very nice.

By 2:30pm they confirmed that Ella has A.L.L. Leukemia. They went through her treatments with us at a conference table in the hospital and had us sign forms to enroll her in the National Cancer Registry.

Late last night she had her first cancer treatment.

Day One- The Journey Begins

On Wednesday morning, Ella went to get a blood draw to check monitor her blood counts. This was the 4'th time she's had her blood drawn in the last two weeks. At 3:48, we got "the call"--Our pediatrician informed us that the blood tests confirmed that our little girl, Ella, has Leukemia. He offered a few words of consolation and encouragement and had us contact a Pediatric Hematologist at Loyola Hospital. I spoke with a nurse practitioner named Gail. She was informative and confident. They had already prepped admissions at the hospital and we were to get Ella admitted that night and she'd likely be staying 3-5 days. It was 4 PM on Wednesday and she let us know that by 4PM on Thursday we'd have confirmation of Ella's disease.

That night she had an IV put in and a blood transfusion. Her red blood count was 7.8 and her white was 13. She had to be awaken every 15 minutes during the night to check her vitals.

They told us that she was scheduled for a spinal tap and bone marrow aspiration for 9am with Dr. R. Manera. Steve went home to get Josh squared away and off to Wisconsin to spent time with his parents. Mom stayed with Ella in her hospital bed.