Leukemia

1. December 25th - Josie stopped walking.
   
2. December 29th - The Pediatrician decided it was a virus in Josie's hip & the x-rays were ok. Scheduled an appointment with a specialist to get a second opinion.
   
3. January 5th- She is still hobbling around so we saw a Specialist (Orthopedic Pediatric Hip Surgeon) He confirmed it was just a hip virus and it would go away.
4. January 19th- Josie fell and hurt her arm. We took a trip to the Emergency room- they said she is fine and sent us home. She cried all night. So I called the pediatrician.
   
5. January 20th - Pediatrician recommends another specialist to set her arm and to get a second look at her hips. Josie's arm is cast and blood work is drawn (He thinks it is probably a virus) The blood work came back fine. I ask if we can have a bone scan because this is too weird -with her limping and not walking on and off.
   
6. January 30th Bone Scan (Accidentally an arthritis specialist see's the bone scan and thinks it is arthritis and calls and leaves a message at our home) Boy was he wrong.
   
7. February 3rd (Follow up appointment with Hip doctor) The Doctor says that her bone scan is fine, but she had some swelling in her left ankle. So he would cast her leg. He tells me it is hard to diagnose breaks in small children. A good portion of their growth plate is still not bone. I tell him, "I am not leaving." I cannot leave with a child who is not walking. He looks at me for a couple seconds and replies, "I will call your pediatrician." He comes back and says we are ordering blood work for Leukemia. An unexplainable fear washed over my body. The horror I felt inside is indescribable. I began to shake and called Dave to come meet us at the doctors. As they cast Josie's leg, I silently cried. I couldn't keep the tears from running out of my eyes. The tech rapping her leg looked at me and said, "It looks like it has been a rough month." I am sure he thought we were beating Josie up or something. She had a bright pink cast on her arm and now an orange one on her leg. Lilly kept saying, "Mom its o.k. Josie's leg will get better." I know this is what it is. I know it is leukemia.
   
8. Dave came and we left to find a Lab to do the blood work. I call me sister hysterical (Dave is in the other car with the kids)It is now 4:30 pm and we raced to two different labs to only find they were closed. So we had to wait until the morning. It was a very very long night.
   
9. February 4th- We went to the Lab at 8:00 AM. They told us it would be a week before the results would be in. We said we couldn't wait and asked if they would call our doctor to get it ordered stat. At 2:00 PM I get a phone call that we are to go to Phoenix's Children's Hospital. The oncologist would like to re-run the labs. Somehow, I am still hoping this is all a big mistake. My doctor tells me to pack my bags. I sort think this is not real.
   
10. I will never never forget the face of that doctor who told me Josie had Leukemia. He looked so calm and so sweet as told me this terrible life changing news. A wave of fear filled up my entire body. My brother and brother-in-law came to give us blessings. I have a feeling of relief, but what was that he said? What did that mean? Is she going to live? Did it mean she is going to live? Things are getting very blurry. I just sort of wanted to run. To run away and take Josie with me. She doesn't have cancer. This is not real.
    
11. We are wheeled up to the second floor (cancer floor) and put in a room with a very sick kid. The shock, the fear, the not knowing is overwhelming. I am in this terrible nightmare and why can't I wake up? They began hooking her up to all kinds of things and tell us that only one parent can stay the night. The parent will be the primary caregiver. The labs that will be done at 4:00 in the morning will tell us what kind of Leukemia she has and the other procedures in the morning will give us more information on her condition. Her crib looks like a steel cage, and I have this small sort of couch thing to sleep on. She cries, so I end up holding her most of the night. Too many people kept coming in and out and the sick little boy throwing up all night is soooo frightening. How can my child be this sick? Make it go away. How can I ask God to make it go away. Who am I to ask for this? How do I tell him that I really really want to keep her? Isn't that the question that everyone on this entire floor is asking for. Make it better? Look at all these sick kids? I don't ask why? That is a silly question. But, the real question is- Will he let me have what I want? Is it in the plan? What should I say? So instead of asking for a fix-I decided I could pray for strength. The answer comes to me. It is strong and in the words of the endowment ceremony at the veil. I am astonished. I just said the entire thing perfectly in my head and I feel calm. Those sacred words came back to me every time I prayed in the hospital. To really ponder on their meaning is amazing. I am so thankful for the power of the priesthood and the temple ordinances in our families life. Josie had many procedures, spinal taps, bone marrow aspirates, blood work, transfusions, a surgery to put her port in, ct scans, and x-rays. She ran a high fever the first week, which was agonizing because she had no immune. She contracted RSV so we were moved to the sick floor. We went in on Feb 4th and came home Feb 18th a full fledged cancer patient. To mangage her pain has been a very big worry for me. But, I know it will all be ok because I get her for eternity. The answer is "Eternity", but the Hell of it is to watch the suffering.
    
    

Josie has a hot pink cast!

It has been a sad and long week so far. Josie seems to have not been screwed together right. Over Christmas she stopped walking because of some trans-virus that went into her hip. We saw several specialist who agreed it would go away. She is still sort of limping. And now she fell down and fractured her wrist. I guess the doctors have decided to run a series of blood test to determine if any of this is connected and most likely we will do either an MRI or Bone Scan dependent on the test result. Poor baby!

Angee's last post had a bunch of words so I thought I'd add a few pics:

1. Fatima Bin Josie (wearing Lilly's dress on her head)
2. A hot air balloon over the wall behind our house
3. Lilly at the carnival in Anthem--can I just say I hate Carnies!
4. Josie looking every bit the angel
5. Working on our circus act; 3 out of 4 Tanner's ain't bad, but we'll be adding Angee to the mix come spring

Rats!

So I haven't kept up on our family yearbook. Life has been crazy. We moved. Lilly started school. I had to find new doctors, stores, and what about friends? Just finding a new pattern to my life has been difficult. And then in the middle of my new life, I started an after-school dance program. I am teaching for Deer Valley Unified School District. I saw that there were no nearby dance studios and called and interviewed with the district. I know I am crazy. Right now, I am just teaching at Lilly's school, but they would like me to do it down the street at another school. (I am not sure I will) It has been fun to teach Lilly dance with the other kids from her school. I have about 40 kids spread between 3 classes. This is on Tuesdays after school. It runs for 12 weeks with a performance for their family with costumes the last day. Her school doesn't have a dance program, even for the older kids to select as an elective in there daily schedule. It has been fun to dance again and I cannot believe that I haven't taught dance in 5 years. Whew! I can't believe how time flies. Its a whole new experience too. I taught High School students and not Kindergartners. Boy was I tired after the first day. Not that the dance moves were so hard but teaching dance and managing the behavior of little ones is a challenge. It was also a bit hard the first couple of classes to get my creative juices flowing but it has been going good. Dave and I also volunteered to register people to vote and that has been fun. I also have been teaching a busy bumbles dance class down the street for an hour on Tuesday mornings at Tutor Time. It is daycare/preschool/kindergarten place. They have like 300 kids on campus. I take Josie with me. And for the hour I teach dance; she goes into one of the little toddler rooms and plays toys and has lunch with them on the tiniest table I have ever seen. It is has been fun. I am really sad for those kids who are dropped off at 7:30 AM and their parents pick them up at 6:30 PM. Don't get me wrong, I think the staff is great! I am just mostly sad for the little babies who should just be held by their mom's and not dropped off at a school. Anyways, I guess I really have started a little side business that takes about 4 hours total of my week to do and it has been fun. It is called the Sonoran Dance Institute and Dave made me some great flyer's, brochures, and pamphlets and currently I can be found at Tutor Time or Deer Valley School District.

This is how it got started. I moved to planned community and they have a big club house. I informed them I would be happy to teach a children's movements class for the community, since they didn't have any. After three different failed attempts with my community director, who is an old lady, who doesn't want to be bothered with the noise in the big empty clubhouse that we pay for as community, I moved on.
I called down the street to Tutor Time and asked them if I could demo classes for them in the month of August. I guess they liked me and told me they fired the old dance teacher because she wasn't so reliable. Speaking of reliability, I have a funny story from my first day of work about that topic. Well, on the first day that I am about to start work. I am driving down the street (It is five min from my house) My cell phone beeps. By the way, I cannot get cell reception in my home. It is the school nurse. Lilly has been sitting in Nurses office with Pink Eye for an hour. My home line was down that day because of construction. I had no idea. I am that dumb mom, who sends her kid to school with pink eye and infects the entire class. Yes it was me! I am feeling terrible and panicked. What should I do? Leave Lilly with the nurse for another hour? So, I pull into work, march in to the front desk, and cancelled my first day of class. Great. How reliable is that. Anyways, teaching dance has given me something to think about, since I am starting over again in a new area.
We just recently had a big relief. Dave's work laid off 2000 employees in AZ. Yes 2000 people and families that are counting on a job. We still have a job. American Express have many different campuses all over Arizona and until last week had about 7,000 employees total here. I just think about all of those different families suddenly unemployed. I feel really blessed and lucky. Anyways, Halloween was fun. We threw a neighborhood party and invited all of our neighbors to come over and eat before they went out to trick or treat. Really nice people mostly from Chicago, Philly, NY. I thought I lived in the South West. Who knew! I need to post Halloween and our recent trip to Huntington Beach to visit Grandma/Pa and the new baby Grant. Hopefully I will do better at keeping track of my family through the blog.

PS Rats! Dave and I have been married six years. I have been collecting butterflies, acorns, fairies, etc... for my Enchanted Christmas tree since then. Last night I was flipping through the Pottery barn magazine and they just came out with a butterfly tree. I hate that! I know people have butterfly trees, but now everyone and their dog will too. Boo Hoo. It is one of my most favorite thing to look forward to all year. Lilly's most favorite tree! I got to go. Josie is smearing her cream cheese/bagel all over me like it is lotion. She is a character.

Graduating Class of 2021

Lilly is so excited and cannot wait to go!

She loved the first day and we had a little
party when she came home.

Here is Josie excited for Lilly to come home!
She also loves to wear Lilly's shoes.

First Week- Memories

On Monday August 11th Lilly started her first day of Kindergarten. I was a little ruffled. Sending Lilly to a school with 1200 other kids, grades k-8th, created a lot of anxiety in me. Which I was not trying to transfer onto my child. What if she got lost in the shuffle. But it all turned out o.k. and she had a great day. Her teacher and classroom were so cute. She told me she made a new friend named Ellie. Who she ate her sack lunch with. She informed me that they ate it in this place called the cafeteria and she couldn't get her apple finished because this strange voice from over head yelled, "Its time to clean up! Its team to clean up!" Which she yelled to me in a robotic voice. I had to laugh. I forgot that intercom's are new to her too. Lilly got to tell the class her favorite thing to do. But, she didn't know that she was only going to get to say one thing. Doesn't surprise me. She could talk your ear off. So, she told her class that her favorite thing to do is fold clothes. Not true! But, her second favorite thing to do is ride roller coasters which she didn't get to tell the class. Now that sounds more like the dare devil Lilly.

On the 2nd day I had her ride the bus to school and picked her up after school. This is something she wanted to do since she saw her cousin Mackenzie riding the little bus to and from her home two years ago. I put her on the bus with a little girl from the bus stop, who is older, who said she would sit by her. I crazily raced ahead of the bus to the school and was waiting at the kindergarten playground when she got there. She wasn't sure which classroom was her's and was a little disoriented because she entered the school from the other side.

Our school has no hallways, so all the rooms open directly outdoors. This is my big gripe. Therefore a giant prison fence surrounds it with locked gates, and only some of them are open for 10 min in the morning and after school to let kids in and out. I know this is a protection from someone just strolling into a classroom and not going through the administration office. But, its like you never could run to the school playground and play because it is under lock down most of the time. I haven't figured out yet which gates are the ones to enter from -it is different from the morning to the afternoon. This school was intended to be a walking school so there is no parking. I have to park so far away to get her that it is ridiculous.

Back to the 2nd day of school
Lilly informed me after school that it was to hot to play outside at recess (115degrees) but everyone has to go out. Which I agree with. Maybe they should wait until it cools off a bit. They never sent me out in a blizzard. She said, "I don't really like to sweat." Another thing that was troubling to her was that you could not touch anything in the classroom. Not one thing. Which she didn't like because she wanted to touch all things in the room. It is really hard to shop with Lilly she wants to touch everything. She can make an apple into a fairy princess etc...

Lilly likes Mz Goings who she calls Mz Glowings. And she is pretty adamant that her name is Glowings and that she is not allowed to call her teacher. But, she didn't like the school lunch because she only got a yogurt and celery sticks. I asked her if she liked celery sticks, which I knew she didn't. But that was all they had she told me. Some how she either didn't make it to the hot food line, or she was just being silly. I asked her about her friend Ellie. Well Ellie sits by her in the classroom but she now has a new one named Winter. I asked why she didn't eat lunch by Ellie? She said I have to sit where they tell me to. She told me she was not going back because there were no toys there and the kindergarten play ground did not have monkey bars and not enough swings for everyone. She then informed me of the playground rules-You cannot push anyone off the swings or climb up the slides. It is just not fun. There is not enough time to color the things your working on. And most importantly she really missed her toys. She also told me that the girl on the bus had really bad breath and she almost fell of the seat because there are no seat belts. So she had to scoot forward to keep her feet on the ground, as to not slide around. Wow! Wow! I lot of new things to worry about. I bet a lot of the other kids had no idea of all the rules. I bet they just played. She is a little too serious. I am hoping school will relax her a bit. But, more importantly someone needs a nap-big time.

3rd Day- "I am not going to school today Mom." Why? I need to stay and play with my toys. Everything was a fight from breakfast to how I combed her hair. Lilly has always slept in. Now, I have to wake her up. That is not a good thing. I guess we will go to bed earlier. I didn't think it was possible. Funny or oddly for a 5 year old, Lilly is amazingly controlled. As soon as we step onto the school yard, she acts like everything is o.k. But, I am pretty sure she did not want to go today. But, when I picked her up she said school was great and she had fun. She said she helped her new friend who got a cut on the playground. She took a band-aid to school in her backpack just incase someone got hurt. Good thinking! She informed me that little kids get to sit on the mat during story time, and not the big soft pink chair. She also really likes the kids at her table and of course her teacher. School is great.

4th Day- As I am dropping her off, Lilly told me that it would be o.k. to call her or come get her if I missed her. Rip your heart out. I looked around and about one third of the kids lining up to go into the classrooms were crying. Oh all day kindergarten is too long after summer break with no structure. When I picked her up she seemed really tired, but wanted to play alone with her toys when she came home. She was worried that the day would be over soon.

5th Day- Everything was great. She was happy to go and more excited to swim after school with her friend Gabriella. She didn't even tell me that her teacher went home early because she was sick. Her teacher sent home a note saying that Lilly was the best listener. I think this school thing is going to be great for her, even if I think that it is a long day.

Man oh Man

Who knew that their little man would end up being my "Man" and Josie's and Lilly's "Old Man." Man oh Man! Someone is getting older. But, you wouldn't know it. Dave is still sweeter than candy! Funnier than snot! One of the happiest people I know. Man oh Man! The easiest of easiest people to be around. A good friend to many. One hard working smarty pants. And, still my personal favorite. Dave you are the very best thing in my life. I am glad that you are mine. Happy Birthday! I love this next picture. Whoeee !!!!! What a babe!

Aloha & Goodbye

Today Lilly graduated from preschool.
It was so fun to see her sing with her classmates.
In the final ceremony they let their classroom butterflies fly away.
It made me a little sad to see this part of her life end.
All of her school mates, play mates and teachers
have made such an impact on her little life and the
funny thing is; she won't in 5 years time even remember them.
Life does go by fast.