Jordyn's Journey to Triumph Over ALL (Acute Lymphoblastic Leukemia)

Thursday, June 28, 2012

Chemotherapy and Jordyn's Support System

Some sweet girls from my ward completely covered our sidewalks out front with butterflies and hearts and a sweet get well note to help brighten Jordyn's day.

I was even able to talk Jordyn into coming outside to see them. (She has not wanted to go outside much since she came home...) We have had lots of people offering their prayers and sharing their concern for us as well as asking what we need. We greatly appreciate all of you! I am still learning what we need help with as we get used to our new "normal".

Jordyn is going in for chemo once a week now, and mid July they will do another bone marrow biopsy to determine what risk category to put her in which will determine her course of treatment.

This picture is prior to her last lumbar puncture.

This is from today after her check up and chemo treatment. She is actually wanting to wear her "morning clothes" as she calls them and not pajamas all the time anymore.

This picture is of her picc line. The nurse changed her dressing today and it is easier to see what it is and looks like without the dressing on there so I took a picture for anyone who was curious...

Also, we learned that her counts are up, and now she is able to come off of her iv antibiotic!

The Story of How She Was Diagnosed

The number one question I get asked so far is about how we figured out Jordyn had leukemia. I really don't love telling the story, since it really isn't a happy one, and it involves my little girl, but it is one that I will tell because it has pretty much changed our lives in a huge way and now leukemia treatment and infection prevention is a big part of everything we do. I am also just going to throw in random pictures from when she was in the hospital to make it more interesting.

Jordyn had been sick on a Wednesday June 6th with a stomach bug. She always has a hard time recovering from stomach bugs because she had already been diagnosed with ketotic hypoglycemia, and so when she go for long periods (over 4 or 5 hours without food) her sugars sometimes drop and then she gets other problems on top of being sick with a stomach bug. Anyway... She was having a hard time recovering, and on Thursday and Friday she had a low fever as well as fatigue since she wasn't eating well still. On Saturday, she seemed fine, still a little sluggish, but seemed to be doing better. On Sunday the 10th, she seemed miserable when she woke up. She was extremely tired, and she had a high fever. I had been feeling anxious about her, and so I took her to a kids care. They thought it might be strep throat, but the rapid test came back negative. They drew some blood, and started her on iv hydration as well as some iv antibiotics because they still thought it might be strep. By the time the hydration was done, the blood counts were back, and they were all very low. They told us we needed to take her to primary childrens emergency room, and they would let us take our car if we promised not to make any stops on the way.

We waited awhile and the er decided they wanted to run another blood count in case the one that had already been done was wrong. They did a ct scan on her neck since she said it was really hurting, and they were a little worried it might be meningitis. We got to the er around 3 and they decided to admit her by around 7. By 9 or so, her room was ready. It took a while to get a room ready since she was put in the immuno compromised unit and they have additional precautions in place there. All the nurses and people who came to see Jordyn had to wear masks and gowns to protect her and their other patients.

We had oncology specialists visit us. They told us her blood cells were oddly shaped, and that could mean two things. It could mean she had a more severe viral infection that was weakening her, or there was a possibility it may be leukemia.

They were very hopeful that it was just an infection and they did cultures for infections both viral and bacterial. They came back that she didn't have any bacterial infections, but they were still leaning towards a viral infection that just got more severe. Some of the viral test would take a couple days to come back. On Monday, they did a bone marrow aspirate to test for leukemia as well. They were hopeful to get the results back that evening, but it didn't get to the lab soon enough and we had to wait for morning.

I think it was around 11:30 or so on Tuesday the 12th that the oncologist finally came to talk to us. He told us it was odd how her tests came back. It showed that she had mono and cmv as well as rhino virus. He then told us that he was 100% sure that Jordyn also had leukemia. She was then scheduled for a lumbar puncture, also know as a spinal tap to see if the leukemia had spread to her spinal fluid and they put some chemo in her spine while they were in there.

She would also have her picc line put in to reduce her risk of infection from being poked all the time. I think it was Wednesday that they officially began her chemo treatment. They let us come home on Saturday evening, but we had to agree to do iv antibiotics at home.

Wednesday, June 20, 2012

Having Jordyn Home / Missing Her Brother

Jordyn came home Saturday evening. Her ANC or absolute neutrophil count is still at 0, which means she has zero capability to fight off infection, so she is on iv antibiotics 3x's a day until they go up to 500. She has a picc line in her arm. That is basically a long line that goes from her arm to about the top of her heart that makes it easier to give her iv medicine and to draw blood. The doctors are wanting to eventually do a port under her skin, but with her neutrophils and her platelets so low, they wanted to wait until they come back up since it is too big of a risk for infection and bleeding.

She is gradually feeling better. She still is sleeping a ton, most likely tired since her blood counts are so low. She is actually eating too, which is a huge step in the right direction.

Her little brother has been staying at his grandma's house during our last little bit of stay in the hospital, and while we got her settled back in at home. He came home on Monday, and that evening he was REALLY sick with a stomach bug. We have been so careful with washing our hands and keeping surfaces sanitized since Jordyn came home, so hopefully she doesn't get a stomach bug on top of everything else... He went back to stay with grandma yesterday to protect us and his sister, and we are sure missing him a ton. Before this point I had only ever spent one night away from the little guy, but he will be coming home to us soon.

Jordyn sure loves the little guy also and she misses him too.

They are always getting into things together.

They are such good friends.

We are hopeful that they will be able to play together again soon.

Friday, June 15, 2012

Jordyn Smith has just been diagnosed with  Acute Lymphoblastic Leukemic,pre-B Cell, a devastating disease that ravages the body of normal cells and the ability to fight off infection. She is 3 years old, and is has been turning heads at Primary Childrens Hospital since she arrived there a week ago with her sweet disposition and demeanor even when going through something so serious and not feeling very good. She has already undergone a blood transfusion and is about to get her second dose of chemo therapy.  Depending on what happens today with a rather large heavy hitting dose of chemo will determine if she gets to go home in the next day or two. This blog will be the home for all updates and postings on things that are going on in Jordyn and her family's life that is of concern to friends, family, and people that care about the situation at hand. Updates on Jordyn, treatments she's going through, donations to the Jordyn savings account to help pay the massive medical expenses, events, and other things will be posted and kept up to date here.