First I want to thank everyone’s patience as I process this day. Two things were discussed today that were HUGE….her CT scan, ultrasound and blood work results AND the next step.
Praise – Hannah’s scans are clear with No Evidence of Disease!
As much as we celebrate this win, the next step is not so comfortable and convincing. Unfortunately, we are at an impasse. There is no good way to take the next step. Any way chosen has monumental RISKS and subsequently equal rewards.
The decision is between…..
1. Going all in NOW and pulling this 1/3 of a remaining kidney out with a risk of metastatic recurrence with limited chemo options. Thus a two-year dialysis plan chemo-free before transplant and an even trickier juggle between dialysis and chemo.
Waiting for potential metastatic recurrence or another life-threatening tumor on her kidney to pop up overnight and surgery possibly not an option or another life-threatening surgery. This option would also put her on dialysis if it involves her kidney with limited chemo options left. Again, same dialysis plan above.
3. The option I ask prayers for…..
The chemotherapy, radiation and surgical interventions over the past 6 months and ultimately ten years have stood up to this vicious disease and will allow for nature to take its course…..ultimately ending in transplant, but with less time on dialysis if at all.
No options a child or her mother should ever here. However, specialists are being called in across the country with hopes of a decision by the middle of next week.
Please pray for our medical team and our emotional, physical and financial endurance as we navigate through a haystack looking for a needle!
We now are a full day home. It is such a blessing to feel our own sheets and be surrounded by our home and friends. On a sad note, Hannah symptoms are coming quicker and harder. Pain that she would normally feel in a week, has already started and at a ten. Her hemoglobin that would normally remain stable until next week has already begun to plummet. I am thankful that our team is on top of things and plans are in place.
Hannah will be back in the hospital for a blood transfusion on Monday and hopefully we will meet with her pain management team to help comfort her at home more.
This journey as a Mom is quite challenging and painful on another level. The very medicine treating/saving Hannah is causing her to cry with discomfort and yet there is so little I can do. As moms, it’s our job to help our babies and this is a battle that I can offer very little relief. Nothing harder!
We will keep everyone posted on our progress as it occurs. For now, can you please play for the next nine weeks…..that is the length of time that the latest chemo and the upcoming two cycles will be causing her this pain. Please pray for her strength, understanding and peace!
Here are some pictures from her visitors during admission….Many visitors were not photographed but always appreciated!
Hannah is in so much pain that she does not want me out of sight, so we compromised and she joined me in the garden…..so did Jax! Praising God for the amazing team that is coming together to make this backyard a place for Hannah to rest! Here’s a sneak peak! Much more work to complete but complete enough to get her outside!
Well Hannah was able to stay home this weekend, despite a very low hemoglobin (5.8 – we want to be above 10) so we begin today with a blood and platelet transfusion at APH!
As we wait through this long process….I would like to show everyone what happened, what we did and all that took place this weekend!
Saturday started out with the most incredible work party in my yard with fellowship, laughs and hard work. We planted over 300-400 plants and transformed the yard! Pictures attached! I can not even begin to describe how I was feeling as the yard filled with energy from individuals known and unknown coming together to make the Dream Escape for my daughter!
After 11 hours in the yard, I anxiously jumped in the shower to get ready for TMA’s performance of the Little Mermaid! What an emotional night seeing friends we haven’t seen in months! The play was incredible and we were honored to get to watch such talent.
Yesterday was a definite recoupment day…..ending with a fondue dinner for my birthday with my girl and my parents!
From the bottom of my heart, thank you for being a part of our lives, thank you for praying for us, thank you for making our dreams a reality and thank you for walking beside us on this journey!
Thank you to the following……
All donors who have helped to make this possible! Lisa Rodriguez, Mark Laverty, Candace Stanaland, Jodi L. Foster , Grass Roots Landscaping, Mark Laverty Landscaping, the Christianson family for the trailer, the Stanaland family, Ken with Urban Design, Ultimate Image team, Lars White , Titon Construction, Jeff Lane and Alliance Pavers, the Wilder family, TMA City Group, friends from near and far! If I have missed anyone, please know it is not intentional!!!
I have been told that there is still much to do, so should you feel called, please donate or share!
WOW!!! I didn’t realize how many people follow our story until I am sick for two days and I have not had a chance to update our friends on Hannah!
It has been a whirlwind since we arrived home! Hannah was granted a wish in her battle two years ago and it was made reality while we were admitted!!! Thank you to New Hope for Kids and Winter Park Land Company for transforming our playroom into a study dream room! If you haven’t seen the video, please see below!
As if our lives have not been blessed by our friends and family, several local companies have been transforming our yard into a masterpiece!!! More pictures to follow, but as for right now, the reveal will come very soon and the accolades will be given to God’s miracle workers!
Should you have some free time this Saturday, we need help! Please PM me!!!
As for Hannah, she is charging through this chemo with enthusiasm and a thankful heart!! This little girl wakes up to this beautiful room and an evolving yard!! We are blessed!!! Thank you for the prayers and the dreams that are coming true!!
Hannah has received three of five chemo treatments this admission and is handling things, in what I consider, a better positive mental attitude. We are still battling body aches and nausea, but overall…..these nurses have been spot on and amazing as always!
While we have been gone….things were continuing to happen at my house that will be a great surprise for Hannah. If you have time…..there is a work day at my house TOMORROW (Saturday)’ to help the mulch be removed from the large tree that has been removed. If you can and are willing…contact email@example.com or Lisa Rodriguez…
I wish I could be there, but soon enough.
I want to thank Hannah’s friend Zoe, Lisa Rodriguez for surprising Hannah with a slime play date. Today a special gift from Silvana Jackson and her Girl Scout troop and Heather Good for their gifts and the hugs!
One final thank you for Andrea DiBartolomeo and her class for their school field trip to our house for a service project about helping others. So much happening here, there and everywhere for this little girl!
FEELING BLESSED, despite nausea and pain she faces we are pushing through!
Finally, happy end of chemo Kelly Mitchell and Arya! We love you guys!!
Checked into our APH apartment on the 4th Floor. Hannah’s first day of chemo is complete and after a very rocky start to our day, Hannah is finally medicated enough to be comfortable and not throwing up or in pain. She was given a very sweet gift recently and I packed it as a surprise that could be used as our ‘night light’(our own marquee sign). Thank you Corey Kopetz Gafnea Kate, Hyatt, and Tim Gafnea. All gifts we have received throughout this journey are cherished and we are so grateful; however, watching her spell this touched my heart and made me cry today!
Hannah is finally feeling the effects of her blood transfusion and was able to enjoy her day. We spent most of it it; as she loves to do, outside. Under shade, but outside.
With that said, Hannah disclosed a dream to a dear friend of mine about a month ago. What I didn’t realize was her dream had far deeper meaning than what she initially disclosed. Hannah dreamed of an outside area/landscaped Fire pit area that she could pray, study, snuggle and exist without needles or doctors!
Hannah, in our private time, also shared to me, that she wanted a place that I could sit and think of her should anything ever happen to her. Although I pray that this is not her time, her thought beyond this moment and to think of me and my ability to grieve and cope is beyond her years!
To my surprise, my dear friend turned this dream into a mission of God! She started a GoFundMe to finance this project and make this small (I think it’s huge) dream into reality.
To my complete amazement, the gofundme grew, and local companies with God-given talents and a community with philanthropic hearts started turning this dream/mission into our reality.
First Green Roots Landscape and Steve, Candice Stanaland and family said a simple YES and began the design and started the donations. Titon construction came in and turned this place upside down and readied this property for this journey. Alliance Pavers quickly stepped in and donated pavers and man power. Ultimate Image (Fred Heldreth) quickly swooped in and offered their irrigation and sod expertise and resources! Frank from said he would build a pergola and finally, Mark Laverty Landscape, said…..’you need plants, I have plants!’ With the money raised and the generous donations thousands of dollars have been donated to us and money has been raised, all of which have exceed my expectations!
Above donations, a work Day was organized that included neighbors, friends and strangers! All to fulfill a dream of an eleven year old cancer warrior.
What people don’t realize is that Hannah opens the doors daily to see progress. What you don’t know is that TODAY Hannah happily assisted, sat and cried about her sooner than later until the dream comes true. What you don’t know, is that Hannah is excited for her upcoming admission to come home to progress in her new space!
What all of you do know is that Hannah and I are in the fight of her life and I AM NOT GIVING UP! To be able to sit under a sun protected pergola or have dinner next to a fire regardless of Florida’s heat, or the responsibility to upkeep a yard that makes my child comfortable to pray and talk to God…..is priceless! I so love to see and hear of her faith!
Please share, donate below or let me know of anyone willing to help as this is not small, but it is big because the heart behind it is MASSIVE!
In my book, I need a place for her to fight for as long as it takes to get rid of this life-threatening, three time presenting devastating cancer!
Hannah update – Well we avoided an admission, but arrived here at the hospital with very little time to spare. Hemoglobin is very low, along with platelets and red blood cells. Hannah has been asleep since we arrived and hopefully will feel rejuvenated by the end of the day and tomorrow. This girl and her persistence not to go to the hospital unless it is scheduled is incredible. She is stronger than I have ever been and beyond fierce!