The Hair Fairy

Last night, we got a visit from the hair fairy.  Before bedtime, Bridget, Gabriella and I placed my hair on the matt at the front door.  I told G that the hair fairy was coming to get my hair and leave something in return.  She loved the idea so I found a bag of popcorn and a couple of books to leave from the hair fairy. This morning, she was so excited about the gifts we received.  I asked her if she wanted to leave some hair for the fairy tonight and she was excited about it.  I was able to cut about 3 inches off (its been a while since I've cut it) in anticipation of her loosing it in about 2 weeks.  She even got the ok from Bridget to cut a little bit of her hair and place it in the bag as well.
It was hard to cut her hair but I just had to do it.  I'm sure it will be harder when it starts to fall out.  Not that it will be hard for her but hard as a parent to accept the changes that are happening.  I think seeing a child with no hair is a tell tale sign that the child is going through chemo treatments and its a serious reality check.  But, I also know that it is a sign that the medication is working and killing the cancer.

G seemed to be getting her appetite back as well.  She was able to eat more food; hot dog, some rice, meat, strawberries and of course her milk.  We would tease her and call her a "milk-a-holic" because she would always drink multiple cups of milk a day.  She just laughs.
She was in very good spirits today and danced with Bridget on the bed tonight to my 80's music...lol!  Adam wasn't home of course or I'm sure we'd be listening to something else ;-).  They had a great time until Bridget fell off the bed...party over and time to sleep.

I was able to get to the gym and got a lot of great compliments about my hair!!  Thanks guys and gals!  It made my day.  I just love our Crossfit gym and our Crossfit community.  The amount of support coming from the gym alone is amazing.  I just can't say enough about the support from our family and friends as well.  We will keep telling you all how much it helps and how much we appreciate it even if it gets old to hear!!


Being a nurse, I find it reassuring that the things we do for our patients, we are doing to help them.  Even though at the time it might hurt or be very uncomfortable, we know that there is a reason for the temporary discomfort.  I am trying so hard to remember this as we go through these procedures, needle sticks, etc. that by doing these things, we are helping Gabriella survive.   We have been giving her Neupogen injections at night to help stimulate her white blood cell count since the chemo will decrease her immunity.  After she goes to sleep, we put lidocaine on an arm or leg to help numb the area.  Then we go back in to give her the shot.  Even though she still feels it, I think that the anxiety of giving her a shot when she is awake would just be too much at this point.  It is just horrible to have to cause pain to your child and both Adam and I just dread it.  I wonder if she will remember, if the cream is actually working, if she's going to have major trust issues with us later on...etc. etc.  I think about the children who have diabetes and who's parents have to go through these shots multiple times a day.  I don't know what is worse.  But I know we do it because we care about our children's health.  We do it because we have to.  There is no other option except to cure her.

Kristin

Another crazy day

So today started out interesting. I walked in the door about 0830 from work and Gabriella met me excitedly saying she wanted to go to the beach. I said great, then Kris told me that when she picked her up this morning, her port in her chest got bumped and G said that her heart was racing. We got a little worried because the port was inserted in the right atrium of her heart. I called the oncologist on call at LPCH. He said, hmmm... better take her to the ER to make sure the thing had not gotten dislodged. It was just too odd for a 4 year old to talk about her heart like that. So the beach/gym plans were out and we were off to Dominican hospital for and EKG and chest x-rays. The folks at Dominican treated us well. The catheter was fine and we have no idea why she felt her heart race. On the way home from the ER we tried the beach but by the time we parked, both girls were asleep and Grandma and Grandpa had to hit the road so we gave up and went home. Of course as soon as we got home, Gabriella woke up and asked "I thought we were going to the beach?" A little lunch and a quick goodbye to Grandma and Grandpa and back to the beach we went for fun in the sun and cotton candy. Bridget and G ran around chasing seagulls and building sand castles. On the way home it was a quick stop at the Winters' for a glass of wine and home to bed.

G felt great all day and actually ate quite a bit of Lollo and Vero's beautiful dinner. The best she has eaten since last week.

I know we have mentioned it before I want make sure everyone knows how fantastic all the help has been. To have the crazy days we have had lately and to come home, exhausted and have a delicious, healthy meal waiting for us is just so nice. I know how much time and effort goes into the planning, shopping and cooking and it is greatly appreciated.

These days are truly insane. We go from incredible worry that something beyond our control can cause our little girl so many problems, to great joy watching her and her sister playing with their friends like nothing ever happened. I know that it is difficult to see right now but there are some blessings in this ridiculous situation, and the first is the respect I am gaining for my little girl. The way she ignores the pain and discomfort that she is enduring and will endure.

OH LOVELY LOCKS!!

I DID IT!!!

Today the first line of duty was to trim those locks for my girl.  I have to admit, I was a little hesitant but  this is just something I could do for my G.  I just happen to have been growing my hair out for no particular reason.  Now I can give something to my little girl, whether she wears it or not, it doesn't matter to me.  Its probably not enough for a whole wig but they can add to it and it will still be special.  

  I wasn't sure if I was going to cry when Rezo (at Luscious and Duke) cut it and when I was telling G's story.  It just felt good.  And I had enough left to style!  He gave me some highlights and it felt great.    It was really freeing and will be easier to maintain.  Gabriella said that she really liked my hair and I just needed a purple dress to look like Rapunzel (at the end of her movie of course).  I think I'll go buy a purple dress tomorrow ;-)  

  Time to accessorize and send that hair off for a wig!

We had some great friends come to visit us tonight.  The boys (Jack and Dash) had a great time playing with Gabriella's Leapfrog.  We played outside when the rain stopped and G really enjoyed it.  She hasn't been eating much but has been getting better at taking her antibiotics.  I had to slip some anti-nausea meds with her abx and it seemed to help.  She had pirate booty, orange juice and a couple chicken meatballs.  Success.  

Its amazing how much life has changed just with what she is eating.  We always tried to keep the girls eating healthy and now we just want her to eat anything!  Cookies, cake, ice cream...none of it has been that appealing for her these days but I'm sure it will come in waves.  

Again, we are extremely grateful for the gifts, cards, dinners, etc that everyone is sending our way.  Adam and I are just blown away by the support and the words of encouragement that you've all given us.  It makes this journey a little more tolerable.  

My mom always told me, "When life gives you lemons, make lemonade".  Well, these lemons are VERY tart but mom, I will make lemonade!

Kristin

Home Sweet Home

Ahhh, what can I say.  It is beautiful to be home.  Just beautiful.  My mom came over and made the house so comfortable to come home to; a clean kitchen, clean floors, soft lighting and flowers.  She knows that makes me happy. Again, we came home to wonderful gifts and letters of support from our friends.  You guys will probably get tired of me trying to thank everyone.  We also had an awesome dinner from Darriell and Shawn, which was so perfect because I was starving!  Grandma and Grandpa helped all day at the hospital with Bridget and she even got a nap in the car.
We also came home with a ton of paperwork, meds and supplies to organize.  It's quite overwhelming and I feel like I'm in school again but that's ok.  I loved school ;-). I am just happy that we have a plan being put into place.

G had a little nap in the car and didn't feel like eating much.  She has always been a big milk drinker and at least wanted her milk tonight.  After much convincing and a little demanding, G took a light sponge bath.  I was hoping it would make her feel better and it did.  I saw the sparkle in her eye and heard her precious giggle as she "cleaned" the bath with her chlorhedidine scrubbers.  We got all the knots out of her hair and scrubbed the adhesive off.  After a few books and a little down time, she was able to fall asleep.

This weekend, we're going to relax and try to get a routine down.  We learned a ton of information these last few weeks and I've got to organize it, absorb it.  Its going to be hard but we HAVE to be so cautious about anyone with a cough, sneeze or any cold symptoms.  We absolutely love having our friends over but have to be vigilant about "screening" any colds.  Thanks for understanding.

Honestly, yesterday I didn't know if I had the strength to get through this.  Its been difficult to breathe and difficult to know the difference between what is reality and what is not.  As we walked through the doors of the "Bass Cancer Center" for the first time on March 16th, I could hardly compose myself.  Adam and I both had to step out, breathe and wonder, "How the hell did we get here?".  It was almost impossible to bare.  This has been the most difficult, heart wrenching, and emotional time in our lives.  As Adam and I gain more knowledge about fighting this disease, we both feel so much courage and strength to get through this.

Go Team G!!!

Home Again!!

AND NO SPREAD OF THE CANCER IN G'S BONE MARROW!  This was confirmed today.

I just love to post good news!
Yesterday was a tough day.  Adam and I switched off staying the night and last night was my night.  It sounded better than the previous night with Adam.  They were able to start all three chemo drugs and I feel so much better about killing this cancer.  I was very anxious yesterday just waiting for G to poop, as Adam posted.  I just felt horrible knowing that this cancer was growing inside her and she hadn't yet had the medicine to start the process.  We tried a few tricks but finally she went and the nurses all cheered.  Funny, the little things that make us happy.

G did great with the chemo but is a little tired and worn out today.  She doesn't have much of an appetite today but we made her drink fluid so we could get home.  This was our criteria for getting to go home today.  Now, I feel better knowing that these medicines will help cure her.

Ok, we're packing up and getting outta here!

Kristin

Bridget enjoying the outside terrace of the hospital and snacking on cereal. 

One down, 13 to go.

I just spoke to Kris on the phone. G moved her bowels finally and they were able to give her the final chemo med this evening. In case you have questions about that. The medication can cause constipation in some kids so they will not give it unless they have a confirmed stool in the last 48 hours. I have never hoped more for poop. Kris said that G is doing very well, she is eating and watching snow dogs, hard to believe that she got tired of Tangled after only 43 run throughs. I came home this afternoon to be with Bridget and it was wonderful to play with her. We laughed and jumped on the trampoline. She seems to be coping just fine but I am sure she will be glad to see her big sis tomorrow. As will I.

Team G

Adam

Waiting game

"Waiting for G's bowels to get going so we can get her chemotherapy started. She's playing princess dress-up with Nana".