Brooke Hester's Journal
Written 23 hours agoIt happens to me every time.
As we first walk back into our quiet little home, I look around and am flooded by the familiar. Some things slightly different but most things resting just the way we left them. The humidity of the air is the breath of our little South Texas home on this amazing ranch that is such a blessing to our lives in countless ways. I collapse into a long hug in my husband's arms and allow myself to sink into the realization that we are finally home... again.
After that, Beau is basically kidnapped by his little girl as she flits from one familiar activity to the next with him. At one point I was outside with her and her incredible kittens (that are now cats) came up to her and I told her, "Look Brooke! They've missed you!! Aren't you going to pet them?"
"Hey Brooke, look your cats are following you!"
"...yeah, I know."
"Well aren't you going to pet them?"
"I am waiting..."
"It's on my list of things to do with Daddy."
The picture with this post is her "list" of things to do with Daddy. The day after the Oxiliplatin, Brooke was in the middle of drawing something and said her fingers were cold and numb and rather than drop the pen and give up, she quite determinedly clubbed it with her fist and continued to draw. It was heartbreaking but I reminded myself the peripheral neuropathy she is experiencing is not life threatening. The cancer is.
Her list here has a section torn off because she only wanted to draw 7 things to do since she is "almost 7."
The choices a parent of a child with cancer must make are so incredibly difficult and that is why we never make ours for Brooke without first giving it to God in prayer.
Brooke is now home and yesterday at clinic didn't even need platelets as hers were still holding out (at 50) from the urgent transfusion she had Monday in St Louis (when they were 6). Her hemoglobin is dropping and is already 8.7 but not low enough to transfuse so she will probably be extremely tired by her next hospital appointment on Monday. Her immunity is also on its way down, so we are taking necessary precautions. Brooke successfully had her Velcade chemo yesterday too and we are so happy her home team of nurses took such great care of her yesterday... they are such a blessing.
Brooke and Benjamin both enjoyed the warm sunshine on sun deprived faces!!! In fact, we ALL did!
This is a song from a very happy girl who just finished doing one of the things from her "daddy-do list" and I hope it makes your heart smile as much as it did ours. You will have to watch to see which of her items on the list that it was.
Have a blessed day... Remember the gift is time and there is no time like now!
All Bundled Up and Rolling On...
Written Mar 5, 2014 1:20amOxiliplatin is a newer chemo. It is a platinum drug like cisplatin and carboplatinum but with less risk of permanent hearing loss. But it comes with a hefty restriction - avoid the cold for 5 days.
After lots of morning prayers, weather checks, and messages to Brooke's doctor when she woke up Sunday morning with a low platelets blood blister on her lip, we made the decision to go on to St. Louis. It was just a little over a two hour drive but the Illinois DOT map and website gave that interstate a 50/50 rating of half snow/ice conditions. It was a slow, careful trip but with mom behind the wheel we were in good hands. We found a small hotel on google that was close to the hospital that offered a good medical rate. Brooke's doctor (on a Sunday) coordinated for her to be seen Monday morning in clinic for likely platelets and to start chemo since the ice storm was going to keep us from making it home.
I met a boy in the lobby when we arrived and learned he was a 10 year survivor of a rare adult form of a pulmonary blast cancer of some sort. When I meet kids like that I know how rare and special and blessed they are and this boy was no exception... Just a walking miracle. His mom was the general manger of the hotel. Coincidence? I don't believe in coincidence. It was God's will that we should "randomly" pick that hotel. The room decor was blossoms and Brooke was so delighted when we got there she said it was the best hotel she had ever stayed at. So much time on the road away from home...
At 7:30 am Monday morning, Missouri time, I called a clinic and asked for a nurse by name who Brooke's Michigan doctor told me to ask for and that is how we met Abby. She was wonderful and kind and warmly told us to get to clinic as soon as we could and they would accommodate for Brooke's medical needs once we did a brief registration at the children's hospital she had never been to before.
When we left it was 5 degrees.
Remember now... The chemo she was to receive has cold restrictions. They are so extreme, especially in the first 24 hours to even not grab a door handle without a glove or drink a room temperature drink without a straw... or there could be permanent nerve damage in the area. The day warmed up slightly but by the time she was done in clinic with the chemo it was dark again and after 6pm. We bundled her up and carried her to a warm truck that had been idling in the turn around by the ER and main entrance.
But let me digress... There was a full day between our 5 degree early morning departure and the after 6 pm late bundle up rush back to the heated truck... That God was totally in control of.
"Are you Brooke... Brooke's Blossoms Brooke??? I can't believe you are HERE! We've been sharing your blossoms with patients and they love them! It is so nice to meet you. Oh I am so excited!"
This was how Brooke was greeted when she got her hospital bracelet for the day. She was overwhelmed and excited and seemed more interested in the new place and people and experience and much less focused on getting her port accessed with the needle, blood drawn, platelets and chemo. Brooke carries such a light and happiness with her. So when she met Aleeza the social worker who also does some child life help, and was greeted with such kindness from someone we didn't even know was a global distribution volunteer, she was overjoyed! They had the blossoms and headbands because another patient fighting cancer had brought them to his home hospital to share which just happened to be the one Brooke needed for her urgent care on the road trapped from traveling far until the ice storm Titan passed on and melted away.
Since Benjamin was born in the St Louis area, we have some extra special friends in the area and one reached out immediately to see if we needed anything. She is a special friend we met in God's perfect plan after he was born... when she tested his hearing. It was originally going to be someone else the day before, but his test was delayed a day, and when she came back to work after returning from her son Stuart's wedding - he's the oldest of her 3 boys and a stage IV Neuroblastoma survivor from his 1989 diagnosis - and that in the course of conversation when she'd had a "feeling" to come back into our room to mention the billing process for the hearing exam.... and found out about Brooke being a stage IV Neuroblastoma cancer fighter. Her name is Kacey.
It amazes me how God uses circumstances to bring things full circle in Brooke's battle.
Kacey came to see Brooke in clinic getting her platelets and chemo... But she also brought Brooke a very special gift. A very special therapy doll.
When Kacey's son Stuart was diagnosed there wasn't GCSF to help a child's immune system recover... there also wasn't anything much for children to role play with and understand at some level what their bodies are going through and why they are being poked and drilled and bandaged and given blood or platelets to feel better or even medicine that makes them feel so horrible. Stuart's grandmother, Kacey's mom, later made a doll that later has become a company of medical dolls to help children everywhere fighting cancer... and now even other branches of medicine. They are therapy dolls with places for ports or broviac or Hickman lines in their chest and bone marrow biopsies in the back. They are made in layers too so under the medical fleece "skin" can be seen an embroidered heart or in he back a spine and pelvis where kids get bone marrow biopsies or spinal taps. They also make extra large therapy bones that open and different types blood cells are inside so children can see and understand the different cells that should or should not be there.
When Brooke was young she really struggled badly with basic things like bandaids and shots. As a small baby, she would cry the second she saw her bald doctor because she associated him with her immunization shots. In fact there was a time where any bald man that approached her made her cry because she was terrified of shots. I have no idea how many shots she has had now but I am sure it is thousands... Easily. But at diagnosis at age 3 1/2, she was in pain and suffering and shock and was truly terrified of much of what was happening so fast. I heard a boy yesterday morning screaming in the clinic "No! I don't want it! Get it out of me! Get that thing out of me! I don't want a needle in my body! Get it out! I don't waaaaaant it!" It broke my heart for him. He was scared and someone finally must have calmed him because his screams quieted. He would have likely benefitted from a therapy doll. Brooke did.
Back then, Brooke's child life specialist knew how she struggled and how we had to hold her for port access and pokes and shots and one day she brought by this doll she named "Andy" so it could be a boy or a girl. Brooke spent 45 minutes that day putting the doll through treatment and asked to take her home when she was done and of course being a medical device doll Brooke could not take her home. The doll was just about the size of Brooke. That was nearly 3 1/2 years ago...
Yesterday, Kacey brought a doll to Brooke. A gift. It was an "Andy" doll.. the same dolls she invented for her son that helped Brooke so much in her early battle... But Brooke could name this doll anything she wanted. She arrived wearing red, white and blue with a Heidi sticker on her chest because Heidi is also Kacey's niece, the Olympian skier that was injured in Sochi just before she was able to compete. Brooke wanted to name the doll Heidi.
Kacey and Brooke did medical role play with the new Heidi doll, changed her facial expressions, accessed her port with help from a nurse, switched her bandana to a wig and Brooke's blossom, and checked her bone marrows and even gave her a femoral artery line.
Then they broke out the blood making bone book and then the bone. It was a huge model and immediately, Brooke noticed something on the bone that was not supposed to be there... a lumpy. She ripped it off and said it was not supposed to be there. I got some of that on video and I will post the link to it as well as the link to the video of Brooke with the Andy doll when she was 3.
Brooke & Mara with "Andy" doll
3 years later....
Brooke & Kacey with "Heidi" doll
It was truly amazing to watch how therapeutic the whole experience was for Brooke. At 3 it was helpful because everything was so new and unfamiliar. At 6 it was helpful because she could relate to it even more from years of fighting.
The Legacy therapy doll Kacey and her mom and sister developed after Stewart's Neuroblastoma battle provides a gentle, child appropriate approach to helping children cope and learn about what their body is enduring. You can read more about their Mediken dolls and products here if you think your child or hospital may benefit from them:
Kacey even GAVE Brooke the "Heidi" doll to keep so be expecting more videos from "Dr. Brooke" in the near future (although she told me again in the truck tonight she IS gong to be the first girl president)!! God really had a big plan when he lined up Benjamin's birth that day we met Stuart's mom Kacey!!
Well... yes... we are still on the road. ALMOST to Grammie and Pappaw's house now. Loading up and leaving St. Louis was an ingesting job between the two of us with a baby and a sweet girl who cannot get cold or even eat a bowl of cold milk and soggy cereal. This morning brought loads of sunshine and warmer pit stops in the mid 30s and low 40s so bundling was easier than the extreme cold was and the truck warms up faster too! Tomorrow we will continue home as our Heavenly Father has planned and Brooke's awesome home team awaits her for check up and chemo on Thursday morning in clinic. We know the road is long but wouldn't trade the time we have together for anything in the world. We continue to have hope with her last stable scans and current therapy plans.
Our hearts today ache as we cried with another family that lost their son, Dustin this afternoon. He was able to be with them through his older brother's 7th birthday Saturday before his peaceful passing at home today. His pain and suffering is forever gone as he now lives in eternity in Heaven. I cannot imagine what his family is enduring right now and ask for prayers for them for strength and comfort.
Thank you for all of your continued love and support for Brooke and prayers for she and our family. Tonight we pulled over momentarily on this little highway to grab some cold Fresca sodas from the ice chest (small town convenience stores are closed at night) and I could hear the soft cry of coyotes yipping in the dark under the prettiest stars. It's good to be back in Texas with only one more full day of driving left until we meet daddy at home again.
...as a plan for the fullness of time, to unite all things in him, things in heaven and things on earth.
A Prayer for my Mom
Written Mar 2, 2014 11:52pmDear God,
I pray to you for so many many things so often, and I always pray specifically with a heart of gratitude above all else. Tonight my open prayer is to thank you for my mom.
She is such a strong, determined woman who taught me how to walk in faith, love others with all my heart and to keep an open mind and happy heart despite any challenge or obstacle. She is the most amazing grandmother to my two sweet children and I feel so blessed in her sacrifice of time away from home and my dad to be here right beside Brooke in her journey so many days and hours from the very moment of her birth, to the horror of her diagnosis, to being with Brooke for me the day Benjamin came early. Mom was there because she chose to step forward and be there. She didn't get directions on how to be a part of this battle with cancer. None of us do. She just comes and does and helps and is always there when she is able. She finds ways to help constantly. She and I live hundreds of miles apart in Texas and she never misses an opportunity to make our lives brighter because she is in them. Lord, I am so grateful for this.
I pray specific thanks for mom tonight, not because we are apart and I miss her, but because I am grateful she is healthy and here with me, with us, now... resting on the bed beside Brooke as I rest beside Benjamin's travel bed on the other bed in our warm cozy hotel room here nearby the children's hospital we will go and find tomorrow that we have never been to before ~ on icy roads ~ in a city we do not know, but that seems to know our family and my son very well.
I sleep better knowing she is here and I know this road would be so much longer and harder without her. I love my mom's sweet smile and contagious laugh. Whenever she shares it, it truly brightens up a room. God, I am grateful for her wonderful, playful nature!
Thank you Lord for this amazing woman in my life I am proud and thankful to call mom. I'm not waiting until the next Mother's Day to say it. She helps me be a better mom, and person, even when we may have disagreed about anything in particular over the years, because she endlessly gives me the best gift of all.... a mother's love.
What a blessing she is. Thank you Heavenly Father for this gift.