Easter Sunday

Today I have no pictures, I guess it's a day I don't want a memory of. A day that I hope will soon fade in my mind. I'm thankful for Grandma and Crew, and the distraction they brought. Easter Sunday was a hard day. I just couldn't help but think what we "should" have been doing. I could imagine a new spring dress for Presley, a matching family picture, and going to church with my cute family. Instead, I held a sick baby girl who is too weak to walk. I kissed her face all day long, and put my fingers through her hair as it falls out. I wonder, again, what I would have done without my mom today. Grandma had a little book for the kids from the Easter Bunny, and made a nice ham dinner.

Sweet Sweet Reunion

One thing that Presley has missed the most is "Crewbee"! She asks and talks about him everyday. It has been 3 weeks since they have been together. Thank heavens for family during these trying times. Mom and Dad have had Crew full time in Southern Utah. They traveled up to SLC with me the night the pediatrician told me that we needed to be at Primary Children's the next day at 8:00 am. It was one of the darkest and hardest nights. Not knowing for sure what was going on with my baby, but knowing that Leukemia was most likely the diagnosis. Paul has been working in SLC and was already up here. My parents have been with us from the very beginning. I often wonder what I would do without my mother. Her positive attitude, and her ability to know what I need at every moment, is amazing. My mom has been so busy with other things on her plate, and she has dropped everything for me including missing work for more than 3 weeks already. I am so grateful that we have lived with my parents for the past 6 months so that Crew would not feel like he was being left with someone he was not comfortable with. Crew loves "Bampa" and "Grama-ma". It has been so hard to be away from Crew.  I'm not one that leaves my kids very often, but I have felt complete peace knowing that Crew is in a good place and that he is getting so much love and attention. My heart is heavy for him too. His world, just like ours, has been turned upside down.
Crew and Grandma came up to see us for Easter weekend. Smiles have been hard to come by these days for Presley. Only a brother like Crew can make it all feel better for a few days. Presley has really been feeling weak, and not up to much more than laying in bed watching movies. Crew could sense that sister was not feeling the best. He hopped right up on her bed and the next 5 mintures was one of the sweetest moments in motherhood. To see my two babies together smiling and loving on each other was just what my heart needed to feel. Crew knew he needed to be soft and would make a sound to let us know that he understood. We love you Crew and sure have missed that sweet little boy!

One of the sweetest moments. Love these babies SO much!

Taking a walk....trying to live a new "normal" life. 

Cousins and Easter Eggs

We were so excited to see some of our cousins and color easter eggs with them. My sister in law, Erin, came to Utah with her kids for Spring Break. One evening they came to the RMH to visit. 

Presley was SO excited to see her cousins!

Getting ready to color some eggs with Benson, Ellie and Jada.

Mommy, Daddy and Presley.

Proud of her "eggie"!

 Jada and Presley! LOVE these two girls!

Cutest Cousins! These girls are the best of friends. Two peas in a pod. They are ALWAYS so happy to see each other.!

Happy girl! Love to see her smile!

Daddy was being silly and making her laugh!

Showing off the egg with her name.

Pretty and colorful results!

Ever so carefully peeling her egg for a little snack! :) 

We are so grateful for family! Presley talked about coloring eggs, and seeing her cousins, for the rest of the evening. Even though it was a quick visit, and she didn't have too much energy, I know it was the highlight of her day. :)

Hospital

The next morning the blood cultures showed a urinery tract infection and the BK virus. We stayed 2 nights in the hospital, just so we could find the right type of antibiotic and a good match for what her body needs to fight these infections. With an ANC (immune fighting) of only 50, which is really low, they have to be very careful to treat these infections.

Story time, hospital style!

We also learned that viruses love to live in steroid environments.  Meaning when kids are on steroids they get infections easier. This stay in the hospital, Presley has been very sensitive.  Because of the steroids,  having just left the hospital from being dignosed, and the long day at chinic yesterday, made for a very sensitive 3 year old. The nurses would try to talk to Presley and she would just look at them like "are you kidding me, not you again". When I was tucking Presley into bed tonight, telling her that I loved her and would always be by her side, she told me... "but I don't want short hair". The little boy next door was crying and she said, "they must be poking him". My little mama heart has seen, and heard enough. Presley has been so aware of what is going on. I have tried to be more careful with what I'm saying. Presley gets uptight when I talk on the phone these days. She knows I'm talking about her, and she doesn't like it. When Dr. Wright came in the next morning and told her she got to go home she perked right up.

My beautiful, and brave little girl.

How she spent a lot of her time. Watching her favorite shows, and dosing off.

You know your the mommy of a cancer kiddo when you take pictures like this!
Yay!! No more blood in her urine!

Day 15

It's Wednesday, so to the clinic we go! Today was the second time we had to be accessed. Presley did a little better than last time. She really does well with accessing, and the nurses comment on how well she does. It's always harder on mommy! No pain, its just the anticipation of the nurses wearing gloves and everyone wearing masks. They wear masks to have a sterile environment when they access the port.

Cute girl with her port accessed. 

You know your the mommy of a cancer kid when you carry lidocaine and press and seal in your bag. This is what we put on her port site to numb the skin and keep it covered until her port is accessed. 

Presley's "numbers" (its all about the CBC and numbers theses days) were good! She didn't need a blood transfusion or platelets. There are 4 things they look for each week when checking her blood count: the ANC (immune fighting), red blood (hematocrit), white blood count and platelets. These are the cells that are affected with Leukemia. The chemo attacks the good, and the bad, cells. It doesn't know the difference. So over the course of treatment Presley will need many transfusions to help bring those numbers to an acceptable range. When leukemia is detected its usually because of an elevated white blood count (with immature cancer cells), and low RBC and platelets. I was thinking Presley was going to need a blood transfusion so I was prepared to be at clinic for a few hours. I was surprised and happy she didn't.

We got back to the Ronald McDonald House (RMH) and Presley needed to go potty. What we thought was going to be an easy day at clinic turned into a few nights stay at the hospital. Presley had blood in her urine. This is normally not too uncommon when platelets are low, because platelets help the blood clot.  But, her platelets were NOT low :( I made a call to the clinic, and we headed back to see the Doc and figure out what is going on. The worst part was that we had to be accessed again, and this is such a process since its all so new to her still.  The Doctors were concerned about the amount of bleeding, so we were rushed for an ultrasound. This was an intense 30 mins for all involved, especially for a worried mommy and a scared baby. The ultrasound doctor came in to give us the results. Everything looked normal..."Pheww!" We were so glad there was nothing serious going on in her kidneys or bladder.  No fever was showing up, so they did not figure it was infection. However, they don't mess around with this stuff, so they took a few cultures of the blood to see if anything would grow.  What was going to be a short day turned into a long, long day, and of course, we didn't have our over night hospital bags packed. :(

"McDonald's House"

We were releasted from the hospital five days after being admitted. It was a happy day, but not as happy as it would have been if we would have been going "home". We went to the Ronald Mcdonald House just down the street from the hospital. We are so thankful for this opportunity! The setting is much like a large house with a big family. We had a little room on the third floor. The kitchen is set up for you to cook and clean just like your own kitchen. The food that has been donated, in the 6 fridges and 5 freezers, is free for all. Most meals, breakfast, lunch and dinner, were donated and prepared by others. At 6pm a hot dinner waiting, and that was heaven sent! The washer and dryers are down stairs and equipped with everything you would ever need.  Everything is donated!
  This was a great place that we called home for about 2 weeks. This is the "house that love built".  We got to know many people who also were struggling with a sick child. This experience has changed me forever. I will forever serve the Ronald Mcdonald House and give back. At first, Presley didnt want to go to "McDonald's house", it wasn't home, and everything in our little girls life had been turned upside down. But then, when the time came to leave, she didn't want to go. She would often look at this picture of Ronald and talk about how "McDonald" was so nice to let us stay at his house. It became a safe and familiar place to her.  We will always remember the kindness we were shown during those early days of her diagnosis.

Food wasn't allowed in the rooms, so every meal and snack was eaten in the kitchen.
This wasn't always convenient at in the middle of the night! :)  

We spent a lot of time in our room watching movies, reading books, playing games, and coloring.

Relaxing in our room

Playing with the Lite Brite that Sister Carter gave her.

The Ronald Mcdonald House was a huge blessing to us and we are so grateful for the experience we had there.

Day 8

We have hit the first big milestone... Day 8. We are living day to day these days! I don't know the day or date,  but I DO know that the first 8 days of treatment are over! Today we went to clinic for treatment. The clinic is much like a doctors office. We played and colored in the waiting room and got to pick our first hat from the "hat tree". Thankful for my hobby and talent of making hats, so that I can pay it forward soon. We picked out the pink hat, of course!

The hat tree

Having a little tea party in the waiting room!

Our appointment was not until 11 am at the clinic and 1pm at RTU (Rapid Treatment Unit) for her Lumbar Puncture (LP). Over the next 2.5 years Presley will have over 20 LP's! The purpose for the LP is to inject chemo in to the spinal fluid to protect the brain from the leukemia cells, a place that it likes to hang out. This process has really changed the course of treatment in the past 20 years for the good success with the Leukimia not coming back and showing up in the brain. The chemo that is injected in the IV does not pass the brain barrier and this was not understood for the longest time. So although it is a very hard task to tell a 3 year old that she cant have eggs and french toast for breakfast, to prepare for the surgery, we know the importance. I think Presley asked for eggs about 15 times and was so hungry! I was so thankful for Paul being with me today to help. Eventually, we just got in the car and drove around. We cheated a little and got a "clear popsicle",  that helped for about 5 min. Presley finally fell asleep in the car.

We applied the EMLA cream to her port site, and were to the clinic by 11. Her port got accessed for the first time. Thank heavens for the EMLA cream to numb the feeling of being poked. The hardest part for Presley is when the doctors want to lift up her shirt to clean and access the port. So we just pull her neck of her shirt down as far as we can.

She got Vincristine (chemo) today in the IV, and a CBC for blood counts. We then went downstairs for the LP or back poke. She's getting to be a pro at the blood pressure, and pulse ox and can put them on and off herself! The hardest part for me is seeing her being put out for surgery, and having to hold her until she is out. It goes quick, but again, I was so thankful for Paul to hold my hand, while I was holding a scared baby. The procedure rooms always look so scary to me. The back poke is a quick procedure. We waited until she was waking up, and then Paul went back to be with her. She did great coming out, no crying just super sleepy. We had a plate of scrambled eggs for her waiting, she was REALLY happy about that!

Later that day we went and got ice cream with daddy. Can you see those smiling eyes behind that ice cream?  She was dying to go to the park so we went, and pushed her in the swing,  but it only lasted for about 5 min. She has such a desire to play, but not much energy.

 Love those smiling eyes! 

Swinging at the park!

Day 8 is over! Hooray!

Whew! What a day! :) 

Induction

Induction=to induce remission

Here is what the first 29 days of treatment looks like:

Dexamethasone x28 days (steroids)

Vincristine weekly IV (chemo)

PEG Day 8 IV (chemo)

Spinal Taps or Lumbar Puncture Day 1, 8 and 29 (chemo in spine)

Bone Marrow Day 1 and 29

The first 29 days of treatment is one of the hardest phases during the 2.5 years of treatment. In some cities, or hospitals, all kids have to spend the whole month in the hospital. The side affect of the steroids can been very challening and painful. 

Here is the road map or course of treament for Presley. Its going to be a long, hard 2.5 years. The
first 6-9 months being the hardest, and it getting a little better during the last phase "maintenance".

These are all the medications we left the hospital with. Steroids, antibiotics, pain, miralax, mouth wash, zantax and high blood pressure meds. The steroids will be the hardest medication this month with the most side effects. Weakness, hunger, insomnia, stomic pains, leg aches, low ANC (immune fighting cells), infections. Love those Steroids... NOT! :(

   This will be the only time during treatment that Presley has to take steroids for 29 days straight. The steroids act or fall under the umbrella of a "chemo". This is the main drug to induce remission. Nasty drug, but great results. We also have a thermometer with us every where we go. If she gets a temp of 100.4 we watch for an hour and then call the clinic or on call doc. If its every 101, we go straight to the clinic or ER. We finally got Presley to wear her masks when she wanted to ride the bike at the hospital. She still doesent love it, who would, everyone always stares are you.

Induction... 

READY. SET. GO!

Day Four and Five

Today was the first time Presley was given chemo via her port, or IV. We have also started the dreadful steroids. She will be taking 2 doses a day for 29 days. 

Presley has loved eating "eggies", and that is pretty much all she has eaten while we have been at PCMC. We laugh at the menu, its definitely a Children's Hospital!

Yummy!!!

The nurses have been so good,  and the doctors have been amazing! We couldn't ask for better treatment. The child life specialists have been great for Presley. Before every procedure, they bring in a cotton doll, and do all the procedures they are going to do to her, on the doll. They always let her check the blood pressure and temperature on her doll.

Beautiful girl! Love that smile!

We have read so many books! I am so thankful I grabbed her favorite stories from home, those have been very comforting. Presley painted, colored and loved riding the trike and tikes car through the hallways. Our room was full of balloons and visitors. We met with nutritionalists, social workers, admin, etc. Its never a dull moment. We played interactive bingo with the other kids at the hospital from our room. Presley loves when the dogs and cats come to her room to visit, thats always a highlight! 

Presley doesn't love it when new people would come into the room. We have to reminder her that there  won't be any "owies". She was nervous because she didn't  know who was going to poke her. :( 

Meeting one of the service dogs... so cute!

Showing off her mad skills!

Go, Presley Go!

Racing through the halls! 

Sweet girl painting a beautiful picture!

Playing games! One of her favorite things to do!

Our Oklahoma family sent Presley a Mini-Ipad! This has been a life saver, not to mention that all the disney movies that were pre-loaded! Her new favorite movie is the Lorax. She wants to watch this movie over and over again! We were told this is very normal for these kids. They want things to be familiar. Our hearts our full, we have so much to be thankful for, even with this horrible diagnosis. We have faith and hope that all is going to be well. I was told today that I was known as the "poster parent" and was told I was on top of things. I assume that is because I ask a lot of questions and follow the rules. We have had many education or learning sessions. We have a big binder of new information to learn and absorb. We feel a little overwhelmed, but they assure us that we will be pros at this soon. Something we never wanted to be pros at, but ready or not, here we come! They often joke that the parents of cancer kids should be given a nursing degree at the end of the 2.5 year of treatment. I agree. I already know how to turn off the beeping, do the blood pressure and pulse ox. I hear by the end of the course I will know how to flush, and administer drugs and fluids thru her port. Crazy!

I love her so much!

Day Five we were released from the hospital. When Presley was diagnosed she had 34% blast in her bone marrow and 18% in her peripheral blood. By day 8 they want the minimal residual disease (MRD) in her blood to be under .099 and day 29 at 0 in the bone marrow. We are only on day four and five of a long road ahead. Please keep us in your thoughts and prayers.

Surgery

The morning of day one, Presley was taken into surgery for three procedures. The first item was the Power Port being placed in her chest. This will be so nice to have, so she won't have to be "poked" again. In the past three days, she has had more pokes than I can count! It is too sad!

This is a picture of an actual port. It is completely underneath the skin. They use a numbing cream on the skin to access (poke) it each week. Because the skin is numb, this doesn't cause any pain. They can draw blood from it, as well as,  administer meds/fluids through it when accessed. You can feel the "bump" of it under her skin if you touch her chest... Not that she'll let you! :) 

The second item to be done, was a Lumbar Puncture. During this procedure they inject her first dose of chemo right into her spinal fluid.  The last item was a bone marrow aspirate to check for leukemia cells in her bone marrow. Surgery went well. The hardest part was leaving her crying in the doctors arms. Daddy was in her arms when she woke up, and luckily she came out of surgery well.

Sweet girl post-op

Shes a quick learner, it didn't take her long to figure out that if you stick your finger in the oxygen mask,  it will make "tooting sounds". The nurse said they all figure this one out eventually! This provided the day's entertainment. Silly girl! We will take the smiles and laughs!

"Toot toot" 

March 12, 2013

March 12, 2013 will always be a day to remember in our family. It was the day we heard the words "your daughter has cancer". On March 1, I noticed Presley appeared pale and had a few bruises that were not normal, or associated with falling. I knew something was different so I googled anemic and leukemia, those were the two diagnosis I found for her symptoms. Of course I figured it was just anemia. I then began giving Presley any food that was high in iron. On March 9, Presley threw up and I was just thinking it was the flu, Crew (our little 18 month old) was also not feeling too good. Paul had been home for the weekend, and he also noticed on Saturday night and wondered why her coloring was not the best. Presley was weak and by Monday I couldn't keep much food or liquid down her. I called Paul and he agreed that I better take her in to see the doctor. I'm sure they were going to tell me it was just virus and there was not much they could do, but they wanted to test her blood for iron so I wouldn't have to force iron down her anymore. We scheduled a 10:30 am appointment in Cedar City with a Pediatrician that we had never been to before. The doctor confirmed she had the "flu", but I kept inquiring to know what her iron levels were. The doctor drew some blood with a finger prick, 15 min later the doctor came in and I knew something was not right. Of course they were not sure about what was going on but her platelets were low and her white  blood cells were elevated and she was very dehydrated. The doctors wanted to get an I.V. started started to get fluids in her and to do further blood work. We were sent to an infusion clinic to get an I.V. and a bag of fluids. At about 4pm we got home thinking we would go get more fluids in the morning. The main doctor from the office attempted to reach me by phone three times and I was not around my phone. Just knowing that he called me at about 5:30pm and three different attempts was a sign something wasn't right. Doctor Nielson informed me that  they are suspecting something going on in her blood, like Leukemia, that we were to be at Primary Children's Hospital in Salt Lake City by 8am in the morning. We had about 30 minutes to pack and get on the road, with Mom, Dad, Crew and all! We had to stop by Cedar City hospital to get more blood work done before we headed to Salt Lake. By this time Presley was no longer tolerating being "poked" for blood work. We got to PCMC at about 2am, and checked in. It was a long night holding a scared baby and being scared myself. I don't think I slept at all that night. The next morning we met Doctor Fluchel who gave us the diagnosis. Presley age 3 and 3 months was diagnosed with Acute Lymphoblastic Leukemia. They still needed to do more testing and a Bone Marrow Biopsy to know what type of Leukemia cells she had. On Tuesday March 12 in the afternoon, Presley was officially diagnosed with Pre-B A.L.L (Acute Lymphoblastic Leukemia).

Hope for Presley

A special thanks to Julie, at Blogger Boutique, for the custom blog design for Presley! She did a wonderful job! Check back for updates and progress on our little girl.