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

Thursday, February 21, 2013

We are getting close...

Today was the last chemo in this current phase of treatment... This means, that if counts are good, Jordyn will be starting Maintenance in two weeks!!! This means her chemo regimen will be changing fairly drastically (in a good way!)

She still gets really scared when we go to clinic. I actually think she may get more scared now than she used to.

On the way home from clinic, Jordyn told me, "Mommy, I don't like going to the doctor. There are too many scary parts..."

This is one of the scary parts that she hates. She doesn't like getting poked, and is terrified every time... Here is a picture of her port accessed before the bandage was put on to keep the germs out.

Toys help her to be brave.

After those scary parts are over Jordyn is much happier and she told me she was this happy face on the scale. She tends to read it more as an emotion scale than a pain scale.

She likes to sit in my lap when she is scared. She seems to think that Mommy can make things less scary.

This is the doctors notes on how her maintenance chemo will work. She will get Vincristine 1x a month, a lumbar puncture only every 3 months with interthecal methotrexate(rather than monthly), 5 days a month every month of steroids, 6MP oral chemo every day till she is through her treatments, continue antibiotics every Monday am and pm and Tuesday am and pm, and 1 oral methotrexate every week.

Roxy came to visit the clinic today.

She danced for Jordyn.

We all thought it was pretty cute that Jordyn and the dog matched!

Jordyn is still seeming to handle the methotrexate really well. Her body has begun adapting pretty well to it, and the medicine we have her on for nausea has been a huge help in keeping her from being super sick. She is super tired today from chemo and from a busy day we had yesterday, so she is taking a nap. I have my fingers crossed that she does this well in maintenance! Cancer will still be a huge thing in our lives, but we can start gradually doing normal things and will be able to leave the house more often(although, normal as we once knew it will never return or be the same)...

Wednesday, February 13, 2013

The Strength of an Egg by Juliet Freitag

The Strength of an Egg by Juliet Freitag

Parents of children with cancer, or really any serious condition, are often referred to or viewed as having strength "like a rock". Albeit flattering, it isn't quite true. It is more like the strength of an egg. An egg, you ask? Yes, an egg. If you think about an egg, you will see the point I make. An egg has a polished smooth outer appearance with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be as smooth and solid as the outside. Most children, at some point in their lifetime, are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet the same egg, tapped gently at an even slightly different angle will break . The contents, once so neatly concealed inside, will come spilling out, and the no longer perfect shell will be crushed. Then the shell looks so fragile that it seems inconceivable that it ever held any strength.That is where parents of with cancer (or other serious conditions) are more like eggs than rocks. A rock is solid all the way through. If you tried to break a rock, it would be almost impossible. If successful, one would find that there was nothing inside but more rock. It takes a lot more than pure hardness to hold the hand of hope. These parents are not solid all the way through. They hurt, they fear, they cry, they hope. It takes a very careful balancing act to keep the shell from being shattered.Balancing an egg while running a household, going for doctor visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed. Occasionally, the angle will be off and the shell will break, shattering hope and the neatly secured appearances of a truly fragile existence. Unlike Humpty Dumpty though, parents of kids with cancer (or other serious conditions) will pick themselves up and put themselves back together again.

Monday, February 11, 2013

February Chemo

Jordyn had chemo today... More vincristine, and more methotrexate... (I think it was a whole 50mg(?) more...) She had clinic and chemo first, and then she had an lp (lumbar puncture aka spinal tap). I was nervous because it usually takes about 3 hours for the extreme nausea to set in, and in the past we have been home usually when that happens, and we didn't bring her reglan with her. Also, I was nervous because she had to go to same day surgery again instead of the rtu... That is never fun, and always more scary, and always seems to take longer. Plus, the waiting room is full of people who are coughing, sneezing, blowing and picking their noses... (All kinds of not fun, could be scary if she caught them germs...) We actually waited in the hallway outside of the waiting room because I could not let her get exposed to all of those people, even if she had her surgical mask on... I was able to take her further than I usually do when she has it done in same day surgery. She was almost to the or when I had to leave. She wasn't scared though... She found a little trike that she LOVED in the hallway, and they let her ride it all the way from the waiting room to her operating room. She was so sad when she woke up and was ready to go only to find out she couldn't ride it out... (She isn't supposed to do anything that takes balance or coordination after her lp's because she is put under general anesthetic, and I also personally know she gets VERY tipsy and wobbly after them and doesn't realize how close she is to falling over. By the time we got to the car, she was starting to look like she felt pretty yucky... (Thankfully I had clinic call down a refill for her on her reglan, so I was able to give it to her in the car before we left) She looked and felt completely miserable the whole way home. She was so nauseous she couldn't talk and was pretty sure she would be sick. Again, THANKFULLY, her medicine kicked in and about 10 minutes after we got home, she was feeling A LOT better and less yucky. I think this dose of chemo might be the kicker though... She is back to being tired and not feeling very well now. She is taking a nap right now, so hopefully she can sleep some of the yuckiness off...

Getting chemo and reading a book

Reading an under the flap book

Jordyn happily riding the trike around in the room right before the OR's.

The same day surgery waiting room... I was bored....

A ceiling tile in the same day surgery waiting area

And Jordyn is out and awake from her lp. This is in the recovery room. She enjoyed watching Mickey and another show.

She said she felt okay, but she usually doesn't admit she doesn't feel very good until she feels pretty terrible. She was flushed and I don't think she felt well... The look on her face definitely doesn't say happy to me, it says I feel horrible...

They had left the trike at the end of the bed, so that made it extra sad for her since she saw it but couldn't ride it. (I really don't think she felt good enough to ride it anyway though...)

All ready to go home!

January 30 Clinic

Jordyn's last clinic and chemo went surprisingly well. She didn't even throw up once. I was amazed. She gets zofran about 15 minutes before chemo, and usually that isn't enough. Thankfully when we were inpatient for that, we also got a prescription for reglan. That, paired with benadryl and alternated with the zofran every three hours has been something that I am extremely grateful for. She did so well last week, Jacob wasn't even sure she got chemo! (She did...) Hopefully she holds up so well next time, since in the past the methotrexate tends to do quite a number on her for a few days or so.

We just arrived to clinic in this picture. She wears a mask to go into the hospital to keep her safe from germs in the air.

Lately her favorite thing to do in clinic while we wait and get chemo is to have mommy read her books or to look through the pictures on her own.

This is one of her least favorite things about clinic, believe it or not... She is getting her blood pressure taken here. She has a hard time holding still enough while they do this, and so when she wiggles, the machine squeezes her arm tighter, and it hurts.

Here she is waiting nervously for the nurse to come in to access her port... She used to do really well, and she still does, but she is a lot more frightened about it than she used to be since that unfortunate asleep poke when she was inpatient.

I got her this real purple stethoscope off of amazon for $3 or $4 dollars, and she loves it. I cut it to the perfect length for her so it dangles perfectly over her neck. She wanted to bring it with her last time, and it was forgotten and she was so sad, so we made sure to bring it this time. She feels pretty special having her very own in her very favorite color.

I decided to show a picture of her port before it was accessed so you can see what it looks like most of the time if you were curious. My finger is in the picture so you can kind of get a size comparison of how big it is and how much it sticks out from her body.

Jordyn and the child life specialist were trying to find her my little pony's or littlest pet shops for her to play with while we were there.

Here she is waiting for the doctor to come in.

This is the look she gave when he did come in... (She still gets nervous just about every time we come to clinic)


Oh the joys of checking for mouth sores... She also doesn't like this part...

Even though she gets nervous, she really does love her doctor and he is great with her. They are actually playing with pony's in this picture (you can see the pony's in the bottom of the frame kind of...)

Sometimes for kids to be comfortable, you have to be willing to be silly sometimes! The best children's doctors know this, and happily comply.

Ready to go home, but not ready to say goodbye to the pony's...

A cheesy mom, do you really expect me to look at the camera face. She decided to look, but wasn't up for the smile I asked for at that moment. Oh, and she made a pipe cleaner necklace.

Getting chemo...

Sunday, February 3, 2013

Happy 4th Birthday Jordyn!!!

Jordyn has been really looking forward to this day for a REALLY long time. I can't believe my baby is 4!!! We all love you so much!!! Happy Birthday from Mommy, Daddy, and Jer! I hope we are blessed with many more years and many more birthdays with you sweet girl! You are one of the strongest, bravest, most amazingly sweet and caring people I know. (I am including adults I know in this as well, which makes you an even more incredible kid!)

Happy Birthday Little One!