Author: Adria

Serenity is feeling better today. She ate a (relatively) huge meal last night, and slept really well. Yesterday she had her surgery and started her chemo. Today she is still understandably fussy and clingy, but she’s being a trooper about taking her meds and I am feeling a little more rested than I have up until now.

Phil left to go to a meeting this morning. Usually he’s the one who gives her her medicine, so when they brought the first one in she emphatically insisted, “No! Daddy do it!” Since Daddy wasn’t here we had a bit of an argument and I ended up holding her down to give it to her, which just breaks my heart. By the second or third dose she was getting resigned to the idea that she has to take it from Mommy too.

She is sleeping now and in a few hours the rest of the family is coming up to visit. I am looking forward to seeing my other children, and I know they are eager to see Serenity.

THANK YOU for all of the donations and well wishes. We appreciate them more than you can know.

A friend made the following banners that can be posted on your blog or website if you wish.

Acute Lymphocytic Leukemia = the “good” kind

She will start treatment tomorrow night, most likely.

She is feeling a bit better after the blood transfusions.

It’s funny how much life can change in 24 hours.

Yesterday we took Serenity in to see the doctor because she’s been feverish and lethargic for the past few days. She had a runny nose and a cough, and it really just seemed like a cold, but I was concerned that she didn’t seem to be getting better quickly. While we were there we mentioned to the doctor that she has had a lot of bruises over the past month or two. Her bruises are mostly gone but at one point she had dozens of them and it appeared that they had been caused by the pressure from our fingers picking her up and lifting her, which seemed unusual. I didn’t really think it was anything but wanted to be sure. The doctor ordered a complete blood panel and said that while it wouldn’t check for everything, it was a good place to start to rule out something like leukemia.

Just as we’d debated the necessity of taking her in to see the doctor, we discussed whether to do the lab work that day or put it off until a later time. We decided to go ahead and get it done while we were there (about 30 minutes from home). We were on our way home from the appointment, on the freeway, when we got a call from our pediatrician that Serenity’s lab work was starting to come back and she wanted us to turn around so that Serenity could be admitted to the hospital. The doctor said she would meet us at the ER so that Serenity could start getting fluids while we waited for the rest of the lab work to come back, and then we would discuss further plans.

When we arrived she told us that they would be transferring us to Primary Children’s Medical Center in Salt Lake City. It’s a great hospital, but it is about an hour and a half from home. I rode in the ambulance with Serenity and Phil went home to pack a bag for our stay and arrange for someone to take our other children. Before we left the doctor said that Serenity’s lab results looked like there was a possibility of leukemia.

When they were loading her into the ambulance the paramedics informed me that I couldn’t ride in back with her. I got a little bit hysterical because I thought she might die all alone and I couldn’t bear the thought of not saying goodbye. There were quite a few moments yesterday when I panicked a bit at the thought of her dying without me being prepared for that. But she did ok in the ambulance and so did I.

Yesterday was a whirlwhind of blood draws and tests and doctors and numbers. I started hearing the word Leukemia more and more, and although they haven’t given us a definitive diagnosis yet, that’s what everything is pointing to, and that feels like it fits. My close friend followed me up in the ambulance and spent most of the day with me yesterday, explaining procedures and answering my questions. She is the office manager for our pediatrician and has several medically fragile children and has just about earned herself a permanent parking spot at Primary’s, so her help and support was invaluable to me yesterday. If I had been alone I know it would have been much harder to process.

The doctor here has started Serenity on two medications, an antibiotic for her pneumonia and ear infection, and a drug that helps break up the uric acid in her system so as not to put a strain on her kidneys. The nurses have been drawing blood every 8 hours and we’ve been very fortunate that so far they’ve been able to do it through Serenity’s IV lock so she has only been poked a few times.

She is very unhappy with the situation. If anyone tries to touch her or lift her arms she screams, “All done!” to let us know she doesn’t want to be touched. As heartbreaking as it is, she is learning what to expect when they come in to do her vitals and she is sick enough that she is sleeping any time she’s not being poked or prodded. Last night she was given platelets and blood over the course of several hours and her numbers have come back up, better than expected, so if her flow cytometry results come back with the expected result the doctors expect that this afternoon she will have a bone marrow biopsy, a spinal tap to check her cerebral spinal fluid, and put in a central line of some sort to assist in blood draws.

So, here we sit waiting in her room on the Immuno Compromised Ward, waiting for the flow results so we know what the next step is. The biopsy will give the definitive diagnosis and then we will be told about treatment options.