An Early Morning

I was woke by the nurse this morning around 5am. I could hear some commotion but couldn't see until I got my glasses on. While doing so the nurse explained to me she had found a leak on Natalie's Broviac line and needed to be repaired immediately. I then notice two other people from the I.V. team getting prepped for what was to be a very long hour and a half. They asked me to assist in holding her legs down while another held Natalie's arms above her head. She had an incredibly rude awakening as the third person pealed her dressing off. Just below needles Natalie loathes getting her lines redressed the most. She exclaimed many times that she wanted her mother, and in doing so did it at a decibel that probably woke everyone on the floor. By the time it was over the IV personnel had redone her dressing twice and still were not confident the stint used was going to hold. We went forward however with the administering through the line. At 11am they started her last dose of Chemo. She has taken it well enough; however the we noticed yet again a leak coming from her line.……They just notified me that they will need to repair the line again. If it cannot be fixed they will have to replace the line in its entirety. They have prepped me that will most likely be a long night as the effect of the chemo will set in this evening.
Blair and Alice were up here today too as Blair gave more blood draws for tomorrow's big day, and Alice received her IVIG dose before her stay for chemo starts in a couple weeks.

Natalie's Rest Day

I was not able to be with Natalie today, however, Tyler said it was well. This is her rest day from the chemo, tomorrow will be her last day of ATG and then Wednesday is transplant. We are happy to be just a day away from transplant. We know that the worst is still ahead as her body lingers until engraftment. Her risk of illness becomes greater with each day. Today Natalie was able to spend time with Grandmother Fish and the two kept busy enjoying the fun things Grandmother had prepared.
The other day when I was with Natalie, she was talking about missing her friends at school. Not but a few minutes later, emails were delivered to her room from friends and family. Thank you so much for your messages. She had me read them to her each at least three times. It meant a lot.
Tomorrow Blair will have one last blood lab before the big day on Wednesday to ensure that all is well. I know Blair will be okay, although, I wish I could donate in place of him. Tonight I gave him an extra long hug. He is the man of the house right now because Tyler is gone and Matthew is with Grandma Schellenberg. Blair decided that his new sleeping quarters are right next to me in my bed. He and I have been spending some quality time together. I received an entire education today regarding viruses. Allow me to share what I learned in Blair's own words, "Mom, there are a lot of viruses out there. Some are tree viruses and some are leg viruses. I once had a tummy virus, but my leg virus hurt more. The tree virus just takes down the tree. And a giant virus can kill a giant." -- My poor children and their intriguing relationship with viruses and bacteria’s/germs. Let's hope over time they won't be afraid of normal things in life. :)
Tomorrow Alice will also be going in for a routine treatment of IVIG (good antibodies) to hold her over until her transplant process begins.
Well now that it is already tomorrow...it's 18 minutes past midnight, I better get some sleep. More ahead this week, as much will be happening.
Love,
Lisy

A hard night

Oh, how much Lisy and I have to be grateful for.  So many miracles in our lives because of the love and compassion all of you continue to show us.  Every night I record a daily record, and every night lately the ending sentence has been in so many words of, “how can we ever express the thanks and appropriate gratitude to you all that have lifted the burden in order to ease the discomforts of our daughters?”  We love you, and thank you from the warmest spaces of our hearts.

I couldn't go back to sleep this morning.  Natalie has had a hard night.  She is exhausted and wants to sleep, however she is so uncomfortable her body won’t seem to allow her to rest.  The vomiting is starting to become more routine.  Around 4:30 this morning as I held her hair back through another episode, all I could do was offer encouragement.  "Get it all out," I told her, "you will feel better when it’s all out."  How would I know such a thing?  After all my experience with nausea is only from viruses my stomach was attempting to usher out.  Natalie doesn't have an unwanted bug, but instead; chemicals that are flowing throughout her blood stream, causing her body to react in the only way it knows how.  That temporary relief we feel after an episode of nausea escapes her.  I see her asleep now, but her face does not show the complexion of rest.  Thankfully she will have an off day for chemo on Monday.  Tuesday calls for one more dose of ATG and then transplant on Weds.  Two weeks from then, should her body accept the new marrow; she will start to feel better.

A Cousin's Tribute

My son heard that his cousins were going to lose their hair during chemotherapy and decided to shave his head to be like them.

Tribute Video

A Better Day

Today was a good day for Natalie. Partly because it was an off day for her ATG Chemo. I took care of the kids until noon and headed up to relieve Lisy around 2 PM. Natalie and I colored and cut out Christmas decorations. I must say that I enjoyed coloring, its been since grade school I think that I picked up some colored pencils and put them to use on a coloring book.  I am grateful that we have a room.

Tomorrow will be a hard day as she will resume all three Chemo treatments.  I've been impressed with her positive attitude even when she is feeling aches and pains.  I am sure she will be able to draw on this experience later in life.  I am very proud to be her father.

Effects of chemo are setting in

Natalie has been so brave today. She hasn't felt well, and spent most of the evening vomiting; however, has remained happy enough. She has complained that her whole body hurts. She has found distraction in her iPad, thank heaven for the iPad. She developed a fairly high fever in the early evening. We think it is from the drug ATG, which is a rabbit antibody. This is the most aggressive of the preparatory regimen. They will watch her closely. She had a small issue with a medication dosage...it was a little too much and caused her to be too sleepy and less able to keep her oxygen level up.

Natalie was able to Skype home to Matthew. She was so happy to see him, and said with a homesick voice "Matthew I just want to be able to hug you", so the two of them exchanged blowing kisses over Skype...it was cute.

I just looked at the clock and it's 1:00 a.m.--well past my bedtime. Days and nights here begin to blend, and surprisingly the time has gone by so quickly today. Tyler is home with Blair, Alice and Evie, it will be interesting to see who will have a more restful night. This is my first night away from my baby! I think I am going to have a harder time than her.

More tomorrow--

Lisy

Double Dose

Today was met with as much anticipation as yesterday.  I wondered how Natalie would feel this morning with a full day's worth of chemo.  As I asked her how she felt, to my surprise she acknowledge that she felt no different than yesterday.  It was a relief to me as I had a hard time falling asleep last night as I wondered when the effects of the medicine would take over during the night.  It would be in the afternoon hours that I would learn the reason why she had not felt the effects of the medicine.  From blood tests taken throughout the night the doctors found that Natalie's body is metabolizing the Busulfan far too quickly.  Therefore they must increase her doze by 80%. As increasing the dose is not uncommon, this percentage of increase is large and must be watched closely.  So, it will be another night of blood draws and vitals.  I hope that she will be able to sleep well enough.  Both Lisy and I trust the doctors working for Natalie and have agreed to go forward with their decision.  Will write more tomorrow.

Tyler

KSL News Story & Video

Unbelievable job done by KSL tonight on their story about Natalie, Blair & Alice.

KSL Website Story

Video of KSL News story

KUTV News Story & Video

In case any of you missed it, here is the story that KUTV ran tonight on the 10 PM news on the girls and a link to their website article.  Looks like they too have posted a rather small video, but mine should be easier to watch and is in HD (if you select HD).  :-)

KUTV Website Story

Video of KUTV News story

The Beginning of the End

My alarm sounded at 3:00 this morning, both anxious and nervous Natalie and I drove out at 4:00am to Primary Children's Hospital to begin her chemo and inevitable marrow transplant. We checked into the ICS at 5am and by 6am she had started on her first dose of chemo. As the doctors have consulted us on what will be a few different types of "chemo medicines" to properly "break down" her existing marrow, Natalie's first dose of slow poison comes by the name of BUSULFAN. Busulfan is a med that is typically used to destroy fast growing cells by interfering with the cells in the growth cycle. The side effects will be nausea and mouth sores. The mouth sores are what I fear the most for her as we all can relate to having a canker sore at some point in our lives. While going through chemo the mouth sores can be so prevalent that they reach beyond the mouth and appear in the throat and sometimes down to the stomach. To slow down the cankers Natalie will have a dose of certain meds and mouth rinse after every meal to prevent the bacteria from building.