Out came the port.

Gratitude!!!

Here is a picture of Josie taken back in August of this year. When I look back at her swollen face, hairless eyebrows, lashes and head. I am so thankful we are far from that now. She is doing so well. She is working so hard in speech, occupational and physical therapy. We are so proud of her. Today she had a surgery to remove her port-a-cath. At the hospital she was wheeled away in a little bed awake. She just laid down, kissed us goodbye and didn't even cry. As they took her away from us, I thought wow Josie has been schooled in hospitals and procedures. She went willingly unlike the rest of the kids who were crying as they were taken from their parents. What a long year. Glad to have the port out. She has had it since February 6th. Wow! Yippee. One more big step towards recovery. She is still doing chemo everyday but is such a good little girl. Josie watches the clock and tells me when she can eat again. (She understands she has to fast everyday) She never complains. Her best friend is Lilly and she cannot wait for her to get home from school. We have so much gratitude in our hearts for where she is at in this point of the therapy. Happy Day.

No title needed

I know the picture quality sucks, but for those of you who've never seen the "angry Josie" this picture says it all. No verbal threats at this point, but the eyebrows make her stance on being photographed pretty clear. Anyway, this photo just made me laugh and I had to post it.

Forward to remission

Have you ever felt worried or afraid? This year has been a terrible year full of enormous fear for me. So huge and underlying in the back of my head that it never never goes away. I truly now know what anguish is. Anguish is when one realizes the unpredictability of the future and how his or her actions may have no affect on this future. For me this concept was not made clear until my child was right at deaths door. It is not remarkable that at this scene you then can feel perfectly what true anguish is. The idea of doing everything I could possible do to take care of my child and knowing that I could not control the outcome has been a horrible life lesson. But it has been a lesson and I am working on being a good student. I have learned a lot. I can still make myself do many many things in hopes for the best. I can find happiness in the smallest smile, littlest hug, and softest kiss. I can still keep going in the dark. I know God listens to us and can lead us. I can make my child do terrible things and take terrible medicine in hopes that the future will be bright. I can watch someone really suffer and not run away. I can hold myself together. I still can laugh. I still can cry even though its seems like there should be no tears left. I can still look to the future with hope.

Speaking of Hope. Josie just made it through honestly the most terrible 7 months of her life and mine too. We are so happy!!! It is time to celebrate. We are on to maintenance chemo. She will take 6mp (chemo) every night until April 16 2011. She will continue to do steroids, spinals, and other chemo's on specific dates in the hospital in a repeated 12 week cycle over and over the next 19 months. We won't know if what we did worked for many years. Actually it is 5 years to "cure." They just sort of said good luck -she survived the hard stuff-if the symptoms return we will reevaluate the therapy. You feel sort of let down and a weird sense of relief/fear. So "Hurray" as Josie says when something good happens and a great big wish all is clear till we reach April 16 2011. At that time it will be considered remission. Go Josie Go !!!!!! You can make it to remission-April 16 2011 here we come.

Happy 7th Anniversary

i wanna get serious right away
1-2, i got a crush on you
what you doin' today or any other day?
1-2, i got a crush on you
just one look and i go insane
1-2, i got a crush on you

i got a crush on you

1-2, i got a crush on you
1-2, i got a crush on you
1-2, i got a crush on you
i said 1-2
i got a crush on you

http://www.youtube.com/watch?v=pwP2UDdHB7c&NR=1
Just in case you wanted to hear it.

Lead, Kindly Light

"Lead, Kindly Light, amidst th'encircling gloom,
Lead Thou me on!
The night is dark, and I am far from home,
Lead Thou me on!
Keep Thou my feet; I do not ask to see
The distant scene; one step enough for me."

We are hanging ON!!!!!!!!!!

Make Do or Do without!

That's our Lilly! Dave and I found her asleep in her bed just like this! She is pretty wonderful! Who needs a real sleeping mask! Goggles and a picnic napkin can just do about anything when they are in the hands of Lilly. Anyways-Which WWII mama coined that 'Make do or do without?"
I miss that silly kid very much. Lilly is the kind of kid who can use it up, wear you out, make you do, or do it out. She sometimes drives me bananas! She is everywhere, has a comment about everything, and wonders what you are going to do about it. "It" being everything! From the moment she wakes up she wants to know the plan or more clearly she tells you the plan. Sometimes I need a time out from her. She completely wears herself out everyday and snores loudly all night. She wears me out! Strangely she reminds me of someone I know. I am sure Dave feels the same way about me sometimes, especially when I hear him snoring at night.

This year has been a very strange year. I have a lot of guilt tied up into how I have mothered her. On the one hand I have one child who is very sick with Leukemia and really needs me. And, on the other I have another child who also needs me and I feel like I have completely ignored her. I have just sort of shoved her on the bus every morning with a bagel in her hand and ran a comb through her hair two seconds before we stepped out the door. I have waved from my car window as I have dropped her off at Icky Gooey Science Camp, gymnastics, and dance. Not that I don't fret, worry, and love her. But, sometimes it was all I could do this winter. Lilly did not get to be a kindergarten baby. I hope it all turns out OK, when I look back at my life of mothering. I hope both of my children don't remember too much of this nightmare.

We sent her to family for part of the summer to ensure she had some fun, and to help us with Josie's demanding chemo therapy. It is very strange to not have her around. It is lonely. Did I actually say that about my little whirl wind? This is the longest I have ever be away from her. I know she is having the time of her life with her grandparents and cousins but I feel very anxious. I was glad/torn for her to go because I was feeling a little overwhelmed with Josie and felt like it would be good for Lilly. But I really miss her. I guess make do or do without also works for me right now, in every aspect. A big thanks to those doing it for me right now with Lilly. I couldn't do it right now and I wish I could.

Button Button who has the button?

This is Josie's port aka "the button." She really guards this part of her body. We call it the button. Just the other day she realized the nurses were calling it a port and asked me if it was a port. It a was two day hospital week so we were there a lot. Picking up on the lingo-Smart kid. A port is a direct line implanted under her skin. Her blood work, organ testing, and some IV chemo's can be administrated through it. Normally, it looks like a raised water bottle lid underneath her skin. It is amazing how less complicated chemo days are because of this really cool device. It also saves her veins from being ruined.
Anyways, one day I got home from the hospital and realized that the iv needle was still attached. (Which means the port was still accessed) I know, how does some one get home with that attached? Well, if you live at the hospital things just go unnoticed. And, she wears clothes which covers it up. As you can see in the picture she had a tube coming out of her button. It totally freaked her out when I was changing her diaper and we both realized that it was still there. I live an hour away from the hospital-So my nurse meet me half way at the costco/tacobell/gas station parking lot and detached the iv and put heparin in her port to prevent any clotting. If anyone was watching; I am sure that was one very odd drug deal. A nurse with a mask on, pumping a syringe into a tiny tube that was coming out of a kids chest. Oh well, I was sure glad I didn't have to go all the way back to the hospital. I had left at 7:00 am and got home around 3:00 so going all the way back would have been exhausting. Especially when you feel like you live there any ways. Josie is one little trooper!!!!!!!!!!!!!!!!!!!!!!

Arizona Easter

How about an Easter Egg Hunt on the hot rocks and under cacti!

Working on Walking

We were cleared to go to parks in which we carried Josie around and helped her slide down the slides etc... Lilly was the best big sister! She was her number one cheerleader.

Crawling was hard work!

Playing with Dad is always fun!

We started PT in March to build back Josie's strength. She was on a new phase of the chemo which had no steroids involved. Which is a good thing! Smiles, singing, sleeping better, and the desire to play were back. Sitting up on the floor more than 5 Min's at a time was very difficult in the beginning and it would wear her right out. Tear at your heart strings. Crawling was out of the question. Therefore our two year old who had walked for a year was really debilitated and immobile. Laying in a bed for most of January and all of February did a number on her muscles. The week before we started PT we practiced crawling every where. She just wanted to scoot on her behind. Her legs hurt and she knew she could at least do that to get around. Her little arms would shake and then she would just lay down when she tried to crawl. But the little tiger in her was still there and she got moving, crawling and walking really quickly. We still cant do stairs but still are working on that!

Coming Home!

When we brought Josie home it was so exciting. Lilly and Josie had not seen each other for 14 Days.














Josie was so excited to sit in her high chair the first couple of days.
















Josie also had her 2 year old Birthday the same week.
She was pretty sick and I don't think she knew it was her party.

Josie was pretty much glued to my hip! We had 2 weeks of sharing a little bed in an hospital room and that had become pretty comfortable and safe for her.





When Dave and Lilly got home from church that first week; we threw a dress on Josie to take a picture. We didn't know what was going to happen at this point and wanted a family picture. She was not happy at all. It was a bust.











The chemo began to take its toll. Her hair started falling out. She became swollen. She couldn't sit up on her own. She stop talking or singing. She stopped smiling and it was heart breaking.

Polar Express

We had a great Christmas Break! We went up to Williams AZ and rode the Polar Express. (www.thetrain.com) It is the old Grand Canyon Railroad converted magically into the Polar Express. It is fantastic to be on an old train with dancing waiters, hot chocolate, and the story blaring from over head. Once you arrive at the North Pole, Santa Clause gets on the train and gives you a bell of Christmas. On the way back from the North Pole you sing christmas songs. I love it. We have done it with the Hancock's, but this year we did it our friends the Vanstee's. Lilly had so much fun eating dinner with her friend Audrey at the lodge infront of the big fire place. Audrey also lent her blanket, because Lilly left her coat at home. Yeah that is right. Someone is bound to leave the most important thing you need in a white out. Oh well. This year it was a real blizzard. It took a very long time to get home and we saw quite a few cars turned over on the sides of the road. It was so exciting to have snow in AZ and to ride a real train. Josie and Lilly had a great time.

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!