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.
<<<<<< 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.
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