On September 14, 2010, I was diagnosed with Acute Myeloid Leukemia / Megakaryocytic or AML M7. My prognosis is that I will make a full recovery with no long term side effects. I am so grateful for family, friends and angels that are surrounding me each and every day of this process. I love all of you! I hope you find my posts interesting as I share a little piece of me and some insights along this life changing journey.

Jessie - Age 2

Yeah - I'm pretty special!

Sunday, December 5, 2010

December 5, 2010 - A very special sacrament meeting was held at Primary Children's today. They always have a 30 minute sacrament session and bring the sacrament around every Sunday to the families that can't attend. Today Elder Ballard attended the meeting and felt inspired to give a blessing to all the children currently in the hospital. What a wonderful day and how kind it was of him to attend. All of these children benefit from the prayers and blessings - we have seen it in action for Jessie!!! Thank you, Heavenly Father, for your inspired leaders!
Special Congratulations to my Daddy!!! He passed his boards and is now officially a Respiratory Therapist. I am sooo proud of him!
Third Session 1/3 complete - December 2010

I came back into the hospital the Friday after Thanksgiving and started my third round of chemo. I was not happy about spending time in bed because I was feeling really good and wanted to play! My mom decided to let me down on the floor of my room and followed me around with my IV pole. We have named it George. This was awesome for me except that I wanted to go in and around everything. My IV tubes kept getting in my way so I decided to pull on them really hard and then I heard a "SNAP". Mom immediately freaked out because I had completely snapped the tubing of my central line and my chemo medication started dripping on the floor. My central line goes right into the arteries and into my heart so I started bleeding through the tube. The nurses came running and we clamped my line. I thought it was really funny until I realized that meant that they would have to repair my line and change the dressing. I do NOT like being held down! After the tube repair was done, I waited for four hours to let the glue dry and then we started my medication again. This put me a little behind and my Mom decided to put me in a crib so I couldn't get out. I was little bummed about that but she wasn't taking any more chances. She freakes out soooo easily. My Dad is much more calm about these things. After all, this is the third time I've broken my line but the first time I've snapped it right in two! He put me back in a bed as soon as he came up to be with me. I finished my chemo on Tuesday and am now in count recovery. I just have to wait until my blood counts go to zero and then start to recover. This will take another two weeks. I am expecting to come home the week of Christmas and that makes everyone really happy! I am doing so much better with this round than my last one. I am nauseated but the nurses are giving me Benedryl and Zofran to help me. The best part about being done with chemo is that I get to run around my room without being attached to George. My new favorite thing is to stand in the window and make blow fish faces on the glass. You gotta try it - it is pretty fun!

Saturday, December 4, 2010

Thanksgiving - Start of Round Three

My third session of chemotherapy was expected to start the Wednesday before Thanksgiving. That sounds a little odd - but if I came in then I would for sure be able to be home for Christmas. That was especially important to my family that I get to be home during the holiday. I was scheduled for a lumbar puncture on Wednesday but because I had some white blood cell blasts showing in my blood, my doctors decided to do a bone marrow aspirate as well. It is a very small world - Melisa Pitt's brother was my anesthesiologist and he did a great job! I spent some time in the oncology clinic after my procedure. There were a lot of sick little kids in the clinic and I have to say... I know that my cancer isn't fun but there are much worse cancers that affect little kids. These kids were very brave and I hope they all get better. The little girl next to me was an inspiration to everyone. She had gone through some really intensive rounds and the doctors had removed one of her legs. She was looking forward to getting her new leg and was excitedly telling the nurse how she was so strong that she didn't need the walker - she just hopped everywhere. Mom cried listening to her. What a brave little girl. You definately made an impact on our hearts. I did what I could to cheer everyone up by walking around and playing peek a boo and dancing. After a few hours, the doctors moved me to my room in ICS. We were all settled in and I had just started playing when my doctors told me that my tests wouldn't be ready until Friday. They decided to send me home to spend Thanksgiving with my family. I was sooo excited! Mom packed everything back up in a flash and we were home before I knew it. I was well enough to go over to Grandpa and Grandma Reynolds' house for Thanksgiving dinner. It was really wonderful. I spilled my Mom's water all over Grandma and I thought that was pretty funny and my Grandma is awesome! I really love her. She is the best to snuggle with. My family went to the movies after dinner but I got to stay home with Grandpa and Grandma and take a nap. It was an awesome day! I have so much to be thankful for and I realize how precious time spent with family and friends is these days.

Tuesday, November 16, 2010

My snazzy new haircut!

I am between sessions but had an exciting new update! My hair has gotten pretty thin these days and so my Dad gave me a new haircut. I am posting some new pics to show it off... what do you think?! Mom only teared up a little... :)

Monday, November 15, 2010

Second Session - COMPLETE (November 2010)

This past week has been a good one for me. I have been feeling better and I had a few great surprises. My grandparents came to stay with me. I really love them!! Grandma spent Tuesday with me and then Grandpa came and spent Thursday with me. I had a lot of fun. Over this past weekend, Alyssa decided that she didn't want to leave Mom and ended up staying the night on Saturday. I guess the hospital wasn't very happy about that but I sure enjoyed it! I got great news on Sunday - my doctors told me that I was being released. What a surprise! We thought I would continue right into my third session. Blessings come in the strangest form sometimes... My doctor said that my counts weren't quite high enough so I had to go home with one extra antibiotic. I'm getting these medications through my central line. A nurse came to the house to show my parents how to do it. I get to have pressurized balls the size of my Dad's fist connected to IV tubing clipped to my shirt. This is awesome because I'm getting my IV meds while I run around the house. In the hospital I have to stay in my bed. I wonder why the hospital doesn't get such cool stuff... I will have my next blood test on Thursday to see where my counts are and determine how many days I get to stay home. Chances are I will be back in the hospital for Thanksgiving but what a lot I have to be thankful for these days! I should be getting another bone marrow test in the coming weeks that will officially show my cancer has gone into remission. Everything so far has shown that will be the case so I am not worried about it. Thank you so much to my ward family who brought over some special bags that I will take with me to the hospital next time. Mom isn't letting me peek - but I can see some really fun stuff in there!!! Love to all of you and my family!!!

P.S. - I was asked what chemo medications I am taking so I updated my treatment plan. Look for it below.... :)

Sunday, November 7, 2010

Second Session - mid way through (November 2010)

I am half way through my second session and feeling much better. I was taken off my anti nausea meds earlier this week and am having to spend a lot less time in bed. That makes me happy!! I have a lot of toys in my room to play with and I love to play hide and seek. I hide and pop up and yell "BOO" with everyone that comes into my room. I am teaching all my nurses sign language and they are coming along pretty well... :) I am still getting blood transfusions because my cell counts haven't recovered. My parents found out that it will take longer for my counts to recover on this session so I don't get to go home in between this session and my next one. That was disappointing news but my therapy is working very well - so we can't complain. At least not too much... So far, I haven't had any serious infections that have gotten me off schedule. I had a great week - my Aunt Jane and my cousin Casey came up to play with me and I had a great time!!! My Aunt Chelle and cousin Aubrey also came to play with me and brought me an awesome book about kitties. I am hoping that things continue to go well with me!!! Love you all!

Monday, November 1, 2010

My second session (October 2010):

I was soooo happy to have been able to go home for a little while!! My parents got a big surprise when they found out that this session was administered in two separate appointments. That meant I came into the hospital for two days for chemo and got released for four "surprise" days at home. I came back into the hospital to start the second half of the chemo and will stay for the three ish week regime. This round hasn't been so happy for me. It is the most intensive of the six rounds and I am feeling it! I have been nauseated and having some diaper issues... cough, cough. It has been a little rough. I celebrated my birthday while I was here and turned TWO! I had a very small celebration and opened some great presents. It was fun and sad at the same time. My family came to celebrate and my Aunt Chelle and Uncle Jason with my cousins. I couldn't really have many visitors. The hospital staff made me a huge Happy Birthday sign and sang to me. I signed "again" and clapped for them - they are awesome! Halloween was a fun day! I still have to stay in my room but I got to watch the Halloween party on TV and dance to the music. My Dad helped me put together special Halloween bags for the other patients and I got some great goodies in return. No one wanted me to miss out on Halloween - so the hospital brought me some costumes to wear. I picked a princess fairy and was the cutest fairy EVER! I am starting to loose my hair - not too much but it is getting thinner... mom is hoping that it comes in thicker than before!!! We'll have to see! I am still trying to feel better so I can come home but it will be a couple more weeks. Thank you everyone for the prayers and thoughts!! I need them!

My first chemo session (September 2010):

I handled my first session really well!! I had to stay in my hospital bed for four days and that was hard because I am super active!!! I had a lot of visitors that came to see me and new toys to play with so it kept me occupied. My parents were very grateful!!! I was given anti nausea medications that worked great. I even gained a pound in the hospital if you can believe it! I wasn't too sick and I didn't loose any of my hair. I was a trooper through it all!! A week after my first chemo session, I had a bone marrow biopsy to test the level of leukemia cells left in the marrow. The results took five days to get back! My Mom was about to "have some serious words" about that wait and got kind of cranky with all the medical staff but the test finally came back and it was AWESOME news! I had no visible leukemia cells in my marrow which meant that the chemo was working and I could expect a complete recovery with no long term side effects!! My parents were overjoyed!! My Mom sobbed for a few hours and everyone was so excited that I was going to be okay. My sisters were very grateful to hear that I'd be around for a long time...

Some of my favorite memories of my stay...
My most favorite was the music therapy sessions. The therapists came to my room and let me play with a guitar and small rice shakers that I LOVED! The Harley Davidson reps came to say hi and brought me a play phone. My Dad and I play Bingo every Wednesday and I have won some really cool prizes. I think I rock at this Bingo thing! All in all, my spirits were high and I was the same happy baby girl I always am... My parents think that is because of all the prayers offered on my behalf. I had a lot of people put my name in the temple and I know that all those prayers were answered!! I have angels surrounding me and even took a moment to talk and wave at those that visited me in the early days of my treatment. My mom doesn't know who was there but those were some very special moments shared with people who love me very much.
My treatment road map:

I have six rounds of chemotherapy for my type of leukemia. I have to plan to be in the hospital for about three weeks and then I get to come home for a week for each session. I start each round getting chemo through my central line. The type of chemotherapy I get changes each time. Sometimes the drug changes, sometimes the method and sometimes the order. This is to make sure that the cells are getting destroyed at the right time and aren't able to regenerate. This lasts about four days. I have to stay in my hospital room and don't get to mingle with any other patients. My white and red blood cells are destroyed along with the leukemia cells with each session so I am really vulnerable to disease and infections. After my chemo treatment, I just have to wait until my blood counts are high enough to allow me to go home. This is a VERY long wait... and my mom is NOT a patient person. :) They complete blood tests on me every day to look at my numbers and sometimes I have blood and platelet transfusions if my counts are too low.

Overview of my treatment:
Chemotherapy - The intitial phase of chemotherapy is called "induction therapy". This involves simultaneously using multiple drugs or a planned sequence of treatments. For most AML subtypes we are treated with an anthracycline (daunorubicin) combined with cytarabine (AraC). The anthracycline and cytarabine act in different ways to stop AML cell growth and lead to AML cell death. These drugs are given in combination over 4 days. The goal of induction therapy is to rid the blood and marrow of visible leukemic blast cells.

Session 1 (Induction 1):
Continuous infusion of Cytarabiune (AraC)/Daunorubicin and 6-Thioguanine for four days.
Bone Marrow test on day 14

Session 2 (Induction 2):
Most intense round of chemo drugs. Infusions were broken into two sessions. Infusion of Cytarabine (AraC)/L-asparaginase, VP/AarC (Etoposide/Cytarabine - AraC) and IT AraC (Intrathecal Cytarabine)
Bone Marrow test

Session 3 (Induction 3):
Same as session 1
No Bone Marrow Test

Session 4 (Induction 4):
Continuous infusion of Cytarabine (AraC) / Daunorubicin
Bone Marrow Test

Session 5 (Intensification 1):
Continuous infusion of Etoposide / Cytarabine (AraC)

Session 6 (Intensification 2):
Same as session 5

Treatment complete and follow up sessions monthly for the first two years.

About my diagnosis....

I was diagnosed with Acute Myeloid Leukemia (AML M7) on September 14. My mom and dad had noticed that I was very pale, bruised very easy and had petechiae (small purple dots that look like a rash) on my lower legs. I wasn't eating very well and tired very easily. They scheduled an appointment with Dr. Bradley Arnold to review my symptoms. The blood tests confirmed the worst. I was immediately taken to Primary Children's Hospital and admitted. It was a very sad day for me and my family. I had IVs put in, lots of doctors and nurses came to see me and I was scheduled for more tests. Mom and Dad were really shaken by the news and were worried if I was going to be okay. After a fews days in the hospital, the results were confirmed and my treatment roadmap was created. I had a hard time adjusting to the hospital and all the new people that came to see me every day. It was scary but after about a week - I had all the nurses wrapped around my little finger. After all - I have a HUGE personality! I have to go through six very intensive rounds of chemo therapy that will put my cancer into remission. The doctors will follow up on me every month with an office visit for the next couple of years and then I get to be done!!!! Other types of leukemia are treated with lower chemo doses that span two years - so I am happy to only have six treatments. Every day will bring me one day closer to the end of my journey.... :)

More about AML:
Acute means that the leukemia reproduces at a faster rate than normal cells. It starts by affecting cells that are not fully developed. Myeloid is a cancerous change that begins in a marrow cell that normally forms certain blood cells - that is, red cells, some types of white cells and platelets.

AML results from acquired changes in the DNA of a developing marrow cell. Once the marrow cell becomes a leukemic call, it multiplies into 11 billion or more cells. These cells are called Leukemic Blasts and do not function normally. These blasts grow and survive better than normal cells. These blasts then block the production of normal cells. Symptoms that are typical for AML include tiring easily, shortness of breath from physical activity, pale complexion from anemia, bruises easily because of the low platelet count, the presense of petechiae, prolonged bleeding, loss of appetite and weight loss. (Jessie experienced all but the prolonged bleeding).

Type 7 (Megakaryocytic) - leukemic cells have features of developing platelets. A flow cytometry was completed to determine this type for Jessie.

At the time of diagnosis, leukemic blasts are typically present in the blood and will likely make up more than 20% of the bone marrow.

AML is a difficult cancer to cure for children. Normal survival rate for children is at just over 51%. The blessing in this - children with Down Syndrome have an 80 - 90% survival rate because that extra chromosome reacts very well to chemotherapy. Only 15% of the childhood cases are Acute myeloid leukemia but this is the most common form associated with Down Syndrome. Children with Down Syndrome require less chemotherapy medication and it works better on eliminating the leukemia cells. Long term effects are typically heart damage and neurological or cognitive problems. Jessie is not expected to experience any long term side effects.

Relapse happens in about 50% of the AML cases for children. Jessie isn't expected to fall into relapse but she will have monthly follow up appointments to check for leukemia cells. In the event that relapse does occur - follow up chemotherapy would be required.

Yep...my parents love me!!

Me and my Daddy

just precious!!

It's okay to bite on this, right??!!

Jessie with her cousin Kyson, playing Doctor :)