Sunday, August 28, 2011

The Diagnosis

Thursday night (Aug 25), Taleah woke up gasping for air. She had been waking up more often previous to that night. I ran in and checked on her. I could tell she was struggling to breathe. I was panicked and didn't know what to do. I texted my dad and asked him what he thought. I contemplated the ER, but decided to get her in the warm shower and see if that helped the breathing. And it did. We slept on her floor that night with the humidifier. The next day she seemed pretty good. I just had a feeling that I needed to take her in. My dad offered to call her in some medicine, a nice doc at Sandee's work offered to see her but I had a strong feeling to take her in. Marsden was out of the office so we saw another doc. She told me that Taleah had croup. We were given the steroid to administer for 2 days. I mentioned her history and asked her to pull up her labs. When she reviewed them, and I showed her the skin color/bruising...she suggested labs be drawn again (even though I promised Taleah we were done with that..she had done it 4 times in the past 4 weeks). We headed down and had them drawn, she hated every second. We went home, had naps and I was awakened from a phone call from my dad (he is a radiologist). He said her red blood cells were extremely low and he was going to call Dr. Haslem (oncologist) and see what he thought. When he called back, he informed me that they were going to have the pathologist look over them. I could tell that he was trying not to panic me, but I could tell he was worried. I started getting really nervous. I then received a call from Marsden saying that things weren't looking great and Primary Children's wanted us up there within 5 hours. I lost it. I knew it was serious. Then we talked about ambulance ride or driving up... I voted for the ambulance because I thought it would be quicker...it wasn't. He then called back to inform me that it was Leukemia.. my heart stopped and I felt like I was in a different world. I had to hurry and pack so we could head out. They dispatched for the ambulance and we would be ready shortly (which ended up 1 1/2 hours later). The ambulance ride was not fabulous and we ended up at PCMC at 10:00 and went to the ER to check her croup issues first. We were down there for about 2 hours (not the best experience due to lack of informed people...who we were told were informed). Then we headed up to our room in ICS.. 4422. Taleah was really pale, tired, traumatized, ect. The oncologist came in shortly to talk about the diagnosis. There were 2 kinds of leukemia and we would find out the following day which one she had. Not that either are great, but 1 (ALL..acute lymphoblastic leukemia...seemed "better" than the other). The treatment is a little easier and can be partially done in STG.


That night was rough. Taleah screamed everytime the door opened, everytime someone walked in the room, everytime someone touched her and even in her sleep probably dreaming about someone poking her. It was heartbreaking and the unknown was almost more than I could handle. We waited and waited the next morning for the news (which was supposed to be 10am). When 12pm rolled around, they came in and my heart dropped. They finally said that they weren't entirely sure but would know in 15 minutes. I just knew that it meant more bad news. I will never forget the moment when the Dr came in and erased the AML from the board and pointed to ALL. I lost it (again) and knew that we could do this.


We then head 45 minutes of teaching and going over treatment which was to start the next day. We even got to go outside for a minute which she loved.That night was full of blood infusions and getting her ready for the next day.


Not sure I slept much...extremely anxious for her big surgery.

6 comments:

  1. Tosha.. I talked to Tia Stokes tonight who heads up Kalamity.. Kalamity has put on a number of benefits already in st george for families and kids of those families and we'd love to put together a show for you and your family... My heart and love goes out to you all. Tanner hasnt stopped talking about you all.. All my love, Lisa. Here is the link to see what Kalamity has done. Kalamitydance.blogspot.com
    Kalamity every year dances and gives back to a local "calamity" in need.
    What ever we can do.. we will :)

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  2. I'm a friend of Lisa's, with two little girls of my own. Your story is heartbreaking and I just feel so much for you and what you're going through right now. I'd love to help, if there is something I can do. I'm so sorry for the spectrum of emotion you must be feeling, but know that your story is important and touching and there are strangers saying prayers for you. My email: katiekatielady@gmail.com

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  3. Oh I am just so sorry! Daph's diagnosis day was the worst day of our lives. Really. But, they get better at it all. Very quickly. Which is at once good and bad. It is awful that my little 4 year old (just turned three at diagnosis) can swallow pills. But it is also wonderful because it makes her life so much easier. Eventually getting her stats taken will be nothing. Getting her port accessed will be nothing. She'll tell them thank you when they are done. I promise. It will happen sooner than you think it will. I'm so sorry that she has to learn and grow in this particular way, but she will amaze you. And you will amaze yourself.

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  4. Hey girl- this is Jocelyn McClellan from your ward before we just moved-!! I'm so so sorry to hear about your news!! I have always thought your fam was so cute and so talented! So sad we never got to know each other- girl you can do this!! If you can workout far into your pregnancy- you can do this!! That ain't easy:) hang in there!! So many people are with you and here for you!! Take care!!

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  5. I work down in the ER at PCMC, I am so sorry to hear you didn't have the best experience there. I can't change what happened, but I hope you accept this apology. I know it wouldn't make the diagnosis any more bearable or the experience better. I am keeping your darling girl and your family in my prayers. I am so sincerely happy you are bonding with the other families in ICS. It is not something anybody would wish upon anyone else, but there is support coming from all directions in that magnificent place.

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  6. Our now 13 YR old had leukemia(ALL) when he was 7 and had 2 1/2 YRS of chemo, a PICC line, 2 ports, infections, 13 transfusions, bone marrow biopsies, spinals,hospitalizations, etc. and now he is big, strong and healthy. It WAS a long, scary and uncertain road with many rough patches and times I feared he might not make it, but he has. I just wanted to let you know that there IS hope and many kids DO survive this.You can get thru this.

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