Last Week of Induction

We are rounding the corner for the last stretch of “induction phase” during treatment.  This is probably the hardest phase because no matter how sick or how low the “ANC (immune system)” counts are, you still plow through with heavy doses of chemo and Haley is really suffering through the side effects.  During the time her “ANC” was the lowest, she contracted the cold sore virus, which if any of you have ever suffered from a cold sore, it is miserable and for those immune compromised patients, well it is about 100 times worse.  This virus has kept her from eating and drinking for about 4 days now.  It was not until last night that her fever finally broke and her counts were back up to 500 so she can start fighting the virus on her own.  We are hoping that today she will start eating on her own so they do not have to use a feeding tube.  Other side effects she has suffered is bloody noses and nerve problems in her shins and finger tips, mild in comparison to the cold sores.  Yesterday was a good day because she was coherent and most of what she said made sense.  She had very little recollection of the last three days.  The mixture of her sleep aid and pain medication did cause some hallucinations, spiders on the walls, flies coming out of her cup, that sort of thing.  To make matters just a little bit worse, her closest and dearest friend, Dare Bear is down with tonsillitis.  I know right??  Get better soon Dari!! J

July 24, 2011

Where did we leave off . . . okay since our last post, we took Haley home from the hospital.  We were so excited because we had a big surprise for her.  While Dad Dawayne is on the road with his band, we converted his studio into a livingroom for Haley, she pretty much has her own apartment now in the basement because it is equiped with fridge, microwave, food cabinet, HD TV, the works.

  She said it was more than she could have ever hoped for.  Now when she is quarantined in the basement, she will be well entertained.  I moved her piano down to her livingroom also so she could still play.
 
  So we are getting ready for her to be discharged from the hospital and I (mom) ask the nurse when they are going to take her tube out and de-access her port . . . looking at me funny she said . . . "oh we are leaving her accessed because you will be giving her antibiotic injections every 8 hours" WHAT!!! Someone forgot to mention that to us so we had to stay at the hospital for a few more hours to be trained on how to take care of an accessed port and inject antibiotics, SCARY!!!  We stayed up until 11:00 p.m to get more training from the home health nurse.  I would have to say me (mom) and Darianne did a pretty good job.

 

  Saturday was the "Hope for Haley Bake Sale" put on by Kiersten Price and Liz Starley.  Munchkin Radio Station was there and there were little tents set up for baked goods, quilts, jewelry and raffle tickets.  It was a huge success.  So many people came to show their support.  Aaron Medford (Haley's uncle) came and purchased a quilt, Val and Dave Jeffs came, tons of people from the ward and neighborhood.  I wish I knew all of their names. 
  
Ben and MaryAnn barbequed hotdogs for all those that came.  Grandma LuAnn made nearly 150 cinnamon rolls and every single one of them sold.  Oh my, that is crazy.  I was expecting to come home to a few trays of those.  No such luck :)  Thank you, thank you for all you that came and those of you that participated to make this event memorable.  We are so lucky to live in such an awesome neighborhood.

  

Only a couple of days after being home from the hospital Haley started to feel a little bit dizzy so we took her temperature on three different thermometers all reading 101.7.  Back to the ER we go.  After Tangled and Lord of the Rings we finally got back up to the 4th Floor, ICU.  We love the 4th Floor doctors and nurses.  They are so attentive up here and we have an awesome view of the 24th fireworks. Yay!!!  See, there is always something to be grateful for.  Nurses that bring really good pain meds, effective sleep aid and a room with a view :) 

July 19, 2011

  Well, the shedding had become a little too much for Haley to deal with so today, me (mom), Haley and Darianne had a little hair cutting party. Haley was in an amazingly good mood. She pretty much let me and Darianne go hog wild with our crash course in hair styling. We started with the “Eva Mendes look” long layers . . . 
<<<<<<




Haley has the thickest hair ever. She easily pulls off this look.

Then to the “Selma Blair look”                                      >>>>>>




 This style made her look about five years younger.  How cute!

To finally reach “GI Jane status” 
<<<<<<<


Yes . . . she is ready for combat!

 That was sooo fun . . . I was filming a lot of the event and we were all laughing so hard that I could hardly hold the camera . . .  Haley is an absolute doll and has the most perfectly cute round head. Not many people can pull off the “GI Jane look” but Haley can get away with anything.  She is beautiful inside and out. 

July 18, 2011

Today Haley is still in the ICU at Primary’s.  Her fever has gone down but they are trying to clear up her throat and mouth sores so it will be easier for her to eat and swallow.  She is in good hands there, all of the staff and nurses are awesome.  Plus, as always, she is accompanied by her closest and dearest friend in the whole world, her cousin Darianne. Hey, Dari, can I just tell you how much I love you and how I would NEVER have gotten through this without you!!!  She always has the right thing to say and turn my tears to laughter.  I don’t know how she does it.  She had me and Haley laughing so hard yesterday we were in tears . . . planning Haley’s prom night . . . Oh my, Dari, you are a character.  Thank you for taking care of Haley for me when I am not there. 

There are no words to express how unbelievably amazing our neighbors are.  Our very sweet neighbor, Kiersten Price, is putting together a fund raiser and bake sale for Haley on July 23, 2011 (Fund Raiser Link). It never ceases to amaze me how people rise to the occasion in time of need.  Thank you thank you Kiersten for putting that together.  Wow, you guys are so awesome!!!!

July 17, 2011

  Haley has now been through three chemo treatments and is struggling with some of the side effects. She has lots of mouth and lip sores, is having a hard time eating and swallowing and she has not been feeling well at all today. She took her temperature a few times, . . . 99.5, then 100.2, then 100.6, so . . . back to the ER we go.  We are now at Primary's waiting to get her labs back to see if she needs to be admitted for the week.

July 15, 2011

  Today's Dr. visit was bitter sweet.  Do you want to hear the bitter or the sweet?  Let's start with the bitter.  A normal body's ANC (Absolute Neutrophil Count) levels are 1.8 for normal immune function, Haley's levels are at .1, which basically means that she has no immune function. The slightest cold or flu could land her in the ER.  Okay, that's pretty bad so let's talk about the good news. When Haley was admitted into Primary Children's the percentage of cancerous cells in her bone marrow was 91%.  Yeah, I know . . . that's crazy!  Today . . . after only two rounds of chemo . . .  the percentage of cancerous cells in her bone marrow now reads 1.8% YAY!!!  That means her treatments are working and killing off all of the cancer cells. Sweet!!!  Her blood and platelet levels were also good so no infusions.  More good news!   Brett and Liz Godfrey brought us some dinner, lasagna, salad and french bread.  Our favorite.  Thanks Brett and Liz!!!

July 12, 2011

  Today Haley experienced her first “fit of rage” against life and God.  The doctors warned us about this.  He said to blame it completely on the steroid medication she is taking so that is exactly what we did.  Liz Starley saved the day by bringing us dinner for the night.  Tami was functioning on only a couple of hours of sleep so that was sooo sweet of her.  Thanks Liz!!!  Another very sweet neighbor, Barbara Hiatt, brought Haley over a gift bag full of treats and money for movies.  Thanks Barbara and family.

July 11, 2011

  Today we got a taste of what our lives might be like for the next two and half years.  We wound up at Primary Children’s ER last night until about 3:00 a.m.  Then back up for work today at 6:30 a.m. You know, I have never been a coffee drinker but I drank three cups today. 

  About 8:00 p.m. last night, Haley started to feel a tightening in her chest and was having difficulty breathing. At 9:30 p.m. when her symptoms worsened, we called the on call Oncologist at Primary’s who said “bring her in”.  So that’s what we did.  After chest x-rays and an EKG, they discovered she has some type of air pocket in the muscle in her throat or chest area.  There is a very big name for this and I was too tired last night to remember what it is called . . . but it common in asthma patients because it can be caused from heavy coughing or vomiting.  Since Haley has done neither of these things, we are instructed to bring her back if it gets worse.  It should dissipate over time.  I guess life could be worse . . . masses could have been forming around her lungs, so we are thankful it is not that.  I suppose there is always something to be thankful for!

Leaving comments

  Leaving comments on Blogs is what makes blogs interactive. Just like facebook, if no one ever posted anything on your facebook wall or accepted you friend requests, facebook might not be all that fun. Many people want to leave comments and everyone wants to read them, so if your here, leave a comment. There are many who have posed questions about how to comment on Haley's blog because they have never done it before. Follow these steps and it is quite simple.

1. Click the comment(s) link that is at the bottom of each and every post.

2. Type your message, and you know what they say, if you don't have anything nice to say, don't say it at all :)

3. Just choose Name from the drop down menu and type your name.

4. Last you will be taken back to your comment where, to prevent SPAM comments, you will have to re-type some letters that a small box will ask you to type. Once you type those letters, Submit your Comment and wallah, your comment is sent.

July 10, 2011

  Today Haley received a huge teddy bear named "Courage" from Paul and Kim King (Dawayne's Uncle and Aunt).  Thanks guys!! Haley loves him. He is her protector bear :)

July 5, 2011-July 8, 2011

  Haley was released from Primary's and she is now resting comfortably at home :) She has since had another round of chemo, bone marrow test and spinal poke to test to see how effective her treatments are. We will get those test results back next week. The doctors and nurses told us not to go nuts about cleaning but, of course, we didn't listen. Mom with Grandma LuAnn washed sheets, walls, carpets, scrubbed bathrooms installed sanitary stations throughout the house and reminder posters in all of the bathrooms and front doorway to "wash hands after entering and before exiting the restrooms."  They wiped the car down with Lysol wipes before bringing Haley home and the nurse said "what did I tell you about going nuts", hehe.  Can't help it :)  We watch lots of movies and stay home a lot so not too much has changed in our lives.

  Huge thanks to the Cobble Creek 2nd Ward for bringing meals all week and all of the love and support they have provided!!  Haley also wants to thank Davey (Dawayne's Cousin) for the Kindle he got her. He loaded it with over 1600 of Haley's favorite books, WOW. That will keep her busy. :) Thanks to Atria (Dawayne's work) for the huge popcorn bucket of treats and Netflix gift cards. What an unbelievable support group she has to help her get through this!!!

Day 5 Since Diagnosis

   Today we woke up early. The nurse took Darianne, Tami, and Makayla through some common procedures to follow when Haley gets home. When she gets home she will have to be as clean as possible. She will also be on a certain type of steroid called Dexamethasone. This acts as an anti-inflammatory  and immunosuppressant. It is 20 to 30 times more potent than the naturally occurring hormone cortisol and 4 to 5 times more potent than prednisone, so she will be eating quite a lot. She will need to eat plenty of calories and protein. She will have chemo treatments every Friday though the schedule could fluctuate. There are many side effects but only a few may occur for Haley. Another tid bit, through testing, the doctors have found that she doesn’t have any leukemia in the brain which is a huge bonus.

   Also today, Haley had the whole volleyball team from Copper Hills High School come and visit her including, Diana, Nina, Nahomi, Elise, Jessica, Aly, Whitney, Brittney, Kalah, Sila, Jackie, Amber, and Marnie. They made her a big poster card and gave her a big puppy. She really loved seeing all of the girls and she loves everyone of you.

Day 4 Since Diagnosis

Today was probably Haley’s laziest day, we didn't do much. The nurse talked to Darianne about Haley’s medications for when she goes home, but nothing more has happened. She is doing well, no sickness.

Edit

So we have got our first post edited with more detail and more correct facts about the beginning signs. If you would like to go back to the first post again and re read it, the information is much better.

Leukemia Day 3

  Today was a really good day. Haley didn’t do much. She mostly slept. Troy Medford (Uncle, Shawn's brother) and his kids Whitney, Sierra, Parker and Gavin, and Sherolyn Medford (grandma) all came and saw her. 

She was also visited by a hospital puppy

  Later in the day she had to have a blood transfusion. This is where they basically find out what blood type Haley is and find a match. The blood is then attached to her port in her chest and is pumped through her body using the IV. As we were all watching a movie Haley noticed that her lymph Nodes were starting to shrink. It was a funny moment for all of us because Haley once named all the lymph nodes she could feel, and her smallest one she named Frodo. So in the middle of the movie she says, “Frodo is gone.” We all look at her and laugh. But then she tells us that her lymph node is gone. Also the huge one on the back of her head has gone down. We all take this as a very good sign that the treatment may already be taking affect. But nothing is set in stone.

The Beginning

As many might understand, we have created this blog to pass along information about our sweetest niece in the world. It can get tough for Tami and Dawayne to take so many calls and continue to send mass texts out updating everyone on Haley. Much of this will be Haley's story scribed by Darianne (her cousin and best friend), as Dar has been with Haley through this entire ordeal.

  

Haley McKenzie Medford was born September 6, 1994.  She was born of Tamara Pace King and Shawn David Medford.  She has three sisters, Makayla (10) Aysia (5) and Jerzi (9 months) and one brother, Tyler (9) born of Tamara King and Dawayne King and one brother, Eric Medford born of Shawn Medford and Candice Libby.  Her mom has 7 siblings, her dad has 9 siblings and her dad Dawayne has one brother so you can only image how many relatives she has.

Brief Overview of Haley in Mom's perspective

I have always felt as if Haley is truly an angel, gift and a blessing to me.  She is so helpful around the house, loves to cook and bake and musically gifted, she has a beautiful voice and plays both the guitar and piano.  I simply could not ask for a better daughter.  At age 16, unbelievably so, she has caused me not one ounce of grief as teenagers usually do.  She is an excellent student, maintains honor roll status, she working on her associates degree in high school and is a candidate for the Century Scholarship.  I never have to ask Haley to help out.  As soon as she sees me cleaning, she immediately starts pitching in.  She starts on one end of the house and I start on the other.  I call her the speed folder because she can fold about 6 batches of laundry in under 20 minutes.  I don't know how she does it.  If something rips or breaks, she is my little fix-it girl whether she pulls out the sewing needle and thread or the super glue, she likes to fix things. A very interesting thing about Haley is she loves to solve puzzles, brain teasers and riddles.  She has mastered the Rubix Cube, an accomplishment I know.  She is logical and extremely good in math.  I think she will make an excellent psychiatrist.  She wants to be a psychiatrist for the military to be specific. She also loves movies and music.  We both do.  Our favorite game to play is "guess the movie quote".   What an excellent memory she has.  She can ramble of in great detail specific lines of hundreds and hundreds of movies and she will always be the one to guess the movie from the famous quote.  She is funny, I will be singing a song, and she will say oh it actually says things on that line.  One simple little word, but sure enough I sang the wrong lyrics.  One of our favorite things to do lately is go to my son's baseball games.  We both loves sports, she played on the high school volleyball team and was one of the best servers on the team.  I would have to say that Haley is my absolute best friend.  I would rather hang out with her than any other person on this earth and that is a fact.  We sing and play the guitar together, watch movies, play volleyball, grocery shop and bake together and I would have her live with me forever if I could.  I love her more than words could ever express.

Beginning Signs

  About a year ago, Haley noticed a little kernel (bump) right behind her ear up into her hair line.  We talked to Grandma LuAnn about it because it caused us some concern.  We took her to the family clinic and it was

in the waiting room

suspected that it was a "kernel" type mass and we were instructed to watch it to see if it changed in size or if it became painful.  With no other symptoms and no change in the "bump" we concluded that it was in fact a "kernel".  Three weeks ago, Haley noticed some painless lumps in her neck and one other lump in her head.  We immediately took her back to the family clinic.  The nurse practitioner thought maybe they were fatty tissue buildups but referred us to an ENT specialist for a biopsy so we would know for sure.  Within two or three days we saw Dr. Gull (ENT Specialist), who ordered a cat scan and tissue biopsy at St. Marks.  He prescribed an antibiotic in the meantime just in case she had some type of infection.  On June 10, 2011, we took Haley in for this procedure and the cat scan showed several lymph nodes swollen. The radiologist at St. Marks determined that a tissue biopsy would come back inconclusive and he called Dr. Gull who scheduled Haley for an incisional biopsy (where they surgically removed a full lymph node in her neck) for the following Tuesday.  This was a same day surgery performed by Dr. Gull on June 21, 2011, who came highly recommended.  His nurse stated he had a steady hand and that if it were her daughter, she would not want anyone else performing this surgery. 

getting ready for surgery

This surgery went very well and Haley received her first "battle scar" as she would put it.  On Friday, June 24th we had the results of her biopsy back which confirmed she had some type lymphoma and she was referred to Dr. Sato, an oncologist at Primary Children's Hospital.  We scheduled an appointment with Dr. Sato on June 30, 2011.  Mom, Grandma LuAnn, Darianne and Jessica all accompanied Haley to this appointment.  At that appointment she had blood work drawn and was scheduled for surgery to have her bone marrow tested.  If under 25% of the cancer cells were in her bone marrow, it would be considered Lymphoma over 25% it would be considered Leukemia.  Within an hour of her blood testing (blood smear),

first "battle scar

Dr. Sato came to me (mom) in the waiting room, and indicated that her blood smear results were leaning towards Leukemia rather than Lymphoma and to prepare admission to Primary Children's first in the Morning, July 1, 2011.

A lot of Haley's signs suggested that she had Hodgkins Lymphoma and to be honest, that is what we were hoping for (97% curable).  When Dr. Sato said the word "Leukemia (70% curable)" I felt like I had the wind knocked out of me and when she started to describe the surgical procedures she would undergo on July 1, 2011, I almost fainted.

July 1, 2011
Before admission to Primary Children's, we took Haley to see the new Transformers in theaters (girls night out with Darianne and Jessica).  We packed our bags the morning of July 1, 2011 and prepared for admission into Primary Childrens.  First day at Primary's was rough to say the least.  Haley had four surgeries in succession so she would only have to go under anesthesia once.  All of these surgeries were basically to determine the extent of the cancer in her body and to surgerically install her "Port".  Which is technically an IV that is inserted right over her rib cage where they can begin giving her treatments.  It was shortly after these surgeries that we learned the exact type of cancer that Haley has, which is Acute Precursor B Lymphoblastic Leukemia, at Haley's age, there is about a 30% chance of relapse, which means later in life it could come back.



- The following day by day has been written out by Darianne about Haley -

Leukemia Day 1- July 1st: Haley has had many friends and family come and visit her. Shawn (dad) came and saw her in the hospital. We were all really happy to see him and see that he is doing so well. He was upset about the diagnosis, but he was truly happy to see her.  Her first night in the hospital, Tami and Jessica (Friend) had to leave for the night so Darianne stayed with her in the hospital. Haley was in serious pain. Her head was hurting and she was nauseous, but she slept it off. She had an amazing nurse who took care of her during the night. Haley didn’t start Chemo that night even though we thought she would, she wasn’t ready yet. She slept most of the night, Darianne was by her side.

Leukemia Day 2: July 2^nd, at 10:00 a.m. Haley woke up and they gave her first Chemo treatment. She didn’t feel sick, only uncomfortable. Then Tami and Dad Dawayne came with Jessica. Roger King (Grandpa), Deb Greiner (Friend) and Scotty King (Uncle) all came and spoiled her with gifts and love. They are all great support and we appreciate all who come and see her. Grandma Glenda sent her a bouquet of balloons and a Teddy Bear, (Haley loves it all). The nurse came and talked to all of us about the side effects of her treatments. She told us to keep Haley as clean as possible. Don’t let sick people around her, don’t go out to crowded places and always be aware if she starts feeling even slightly sick. A small fever could be fatal, so we must be careful. Usually it’s not always the cancer that kills; it’s the sicknesses they get while treating the cancer. Her immune system is going to be very low, so anything could hurt her. She is going to be like a new born baby; bald, tender, and will need a lot of taking care of. Tami and Dawayne will have to keep track of the people that are going to school with her siblings Tyler and Makayla. So I guess all in all KEEP YOUR KIDS CLEAN AND AWAY FROM HALEY! She is a very vulnerable soul.