Nearing the End of Induction

Jordyn's last appointment took forever. We were at the hospital for almost 5 hours, and she just had her checkup appointment and her chemo. When they went to draw her blood out of her picc line, it would flush, but they couldn't get blood to draw back and they do blood counts every week to see where she is at. They tried to move her arm in all types of different positions, but nothing worked. Finally the nurse talked the doctor into letting her use tpa which helps de-clot the line. They checked it after a half an hour and it still wouldn't draw blood. It was about an hour and 20 minutes by the time her blood was actually drawn. Jordyn was able to order spaghetti while we waited since she was there for over 3 hours, and she feels like she is always pretty much starving because of the steroids she gets every day which are part of the chemo treatment, even though she is eating more than I am at the moment.

Her dressing on her picc line has to be changed once a week, and we knew at that point that we wouldn't be home in time for her scheduled nurse visit, so we asked if they could change it at the hospital. Jordyn was actually very brave going in and not terrified like she usually is, but by the time we got to the dressing though, she was really scared because nurses had been talking about her picc line not working and she was worried they were going to put her in the hospital or poke her with a needle or something. I finally realized why she was so scared, and I reassured her and told her more about what they were doing. She has really wanted to know pretty much everything that is going on throughout this process and she seems to do a lot better and be less scared as long as people are communicating with her.

We finally got her back into the big room where they do everyones chemo treatment, and she was a lot happier. We were told her blood counts. Her white blood cells are finally back into the "normal range" at 6.6. Her platelets are up in the normal range again as well at 282, and her hct is still hanging on in the low range at 27.1 and it has been typically around 28 so not much change there.

Physically: Her hair is starting to fall out a lot. I was left covered in hair after her appointment, and so was her car seat. I am noticing that it is really starting to thin out at this point, and every morning when we brush it lots comes out even when it isn't tangled or anything. I think she has thrown up once from the chemo. She is starting to get very puffy cheeks and looks a lot differently in her face than she did before and her belly is growing and both of these are things that happen with the medicine she is on. She even has an outie belly button at the moment and she usually has an innie. She is still super tired, but is starting to play occasionally and shows some interest in toys again but not much.

Her next appointment will be her usual checkup, and then she has surgery. She is going to be getting a bone marrow aspirate and biopsy as well as a lumbar puncture where they will also put some chemo in her spinal fluid, but she will not be getting normal chemo next time or the time after that I think. We will hopefully hear sometime next week if there are still cancer cells present in her bone marrow, and they will decide further treatments based on that.

Hair....

We have been talking with Jordyn about her hair and trying to prepare her for when it will possibly fall out. This has been a very hard subject for her, and she is very sad to know she might become bald, but happy to know it should grow back when she is done with her chemo treatments, but sad that it won't be for quite sometime. She has been talking about doing a photo session with me before she loses it in her favorite outfit, and it has been something that seems very important to her. Tonight, when I ran my finger very softly and gently through the very ends of her hair, about 10 pieces of hair would come out every time. I decided tonight was probably the best time since she hasn't been feeling too yucky today, and had more energy than usual. We set up my studio and did some pictures. She was very sweet and told me she wasn't even going to stick her tongue out for them and was just going to sit and smile for the camera. It went well, and I will try to get those pictures up soon. Then she was ready for bed, but she was so concerned that her hair will all fall out before she got her first hair cut. She wanted to do it right then and there, so we did. Jordyn got her first hair cut of her life tonight. Here is the before and after. Not the greatest pictures ever, but you get the idea.

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.

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.

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.