Here we go again….It is very hard to believe that we are already through seven weeks and it is time for scans again. This Friday, October 19th, at 9 am, Hannah will be sedated for an MRI from neck to pelvis. It has been ten months since her third diagnosis….your prayers have helped us through every step of that. Please consider taking the time to think about us and praying for us. Praying for our peace as we wait, our grace with the results and our strength to face whatever may come thereafter! Thank you in advance.
I find myself constantly amazed by the way God orchestrates our lives…I know he is in control but yet I find myself dumbfounded every time he shows himself to me. So, as I write this post I smile, loving that I am constantly reminded that I am not alone.
It seems fitting that a lab work follow up, that would provide answers as to which way we will navigate the upcoming days, would manage to be cancelled/changed for a variety of reasons and be rescheduled to the very day Hannah was diagnosed ten years ago and they day after childhood cancer awareness month concludes.
Upon telling Hannah that today was going to be her recheck, she imediately said “no mommy, that is not a good day for us.” I agreed….I hate today with a passion, but yet I found a calm came over me that said, “Let’s make it a good one.” Hannah, is allowed to say two bad words on the anniversaries of her diagnoses….crap and sucks. I ran into her teacher today, who tells me, “Hannah, said today sucks”….of course she explains why, and he kindly nodded and agreed with her. (Thank you for this grace Jef Gordon) When I talked to her about this statement, I told her it was okay to feel that way, but lets make it end different.
So as Hannah and I drive this afternoon, to Arnold Palmer, we reminisce over our ten years, some things sad but a lot of amazing memories that we would never have shared as mother and daughter. I still, sit quietly in the car as she talks wondering what the next ten years will look like.
The truth is, we don’t know. The truth is…we don’t have facts to base Hannah’s results off of as she is paving the way for Metastatic Wilms’ Tumor. I do know this….this little warrior is on a mission that I can not control, her doctors can only react to or predict about and our lives need to be lived and not feared.
Hannah, will never have what we stereotype a “normal” life to look like….she has many more mountains to climb and in what order they occur, one will never know.
Hannah continues to slowly (and I mean slowly) improve in the lab department, so today we will veer left until we are told to veer right…..today we celebrate and tomorrow we begin the amazing new journey that we face. Any day they let you walk out of the hospital instead of hold you back is a GREAT day.
To our friends, family, loved ones near and far….thank you. To our cancer partners, warriors, angels and team….I hate that we are here, but I am honored to gain strength by each and every story I read and life that I meet.
To my beautiful daughter HANNAH….ONE DAY CLOSER! I am honored to be your mom!
Love, Thank you Sir Johnsky for always being there, the treats and the prayers!!
First let me say thank you for all the prayers and secondly I would just like to share two major obstacles I have learned to face…the first, I am not in control of Hannah’s health….it is not going to become better or worse by my angst, my fear or my obsessive compulsions. The second, my daughter is a medical anomaly….she has never and will never fit into a ‘protocol book’ or do as others have in the past….she is paving her own way through cancer and my fears are based off of past patients prognoses instead of waiting to see what Hannah does. These lessons/realizations came to me yesterday through a monumental amount of channels.
The quick snap shot of what we are facing is this….For every action, there is a reaction. For all the chemo that I have agreed to allow treat Hannah, there is an exponentially high chance that it can cause side effects similar or even worse than the initial intention of the medication. All this being said, not only are we watching for kidney function and scans for no tumors, we now have to watch her blood for secondary forms of cancer.
Hannah’s blood tests were abnormal two weeks ago and yesterday we had them retested. The results of yesterday, should they have gone down could have led us quickly to a leukemia scare. If her blood work went up, we would find out that Hannah is just doing this on ‘her time’. The results indicated that some went up, some stayed the same and some went down…..thus not truly giving us an answer, except let’s watch and recheck in two weeks.
I wish I could nod my head and gain a definitive answer, but that’s not how this life and God works. Hannah has NEVER done anything in the medical field as they would have expected her to do. Her kidney cancer has some of the best prognosis statistics in pediatric cancer, but Hannah is teaching them not to let their guards down because she’s here on this earth to shake some things up!
Some hope for their child to be a star athlete, or the class valedictorian….my child is choosing to challenge the pediatric cancer world as part of her legacy. As much as this has caused me and others great pain, what a blessing I have to say, my three time survivor is still throwing curve balls and keeping these amazing medical professionals on their toes!
To our team, our friends, our prayer warriors and my family hang on tight….she’s in to give us all a good ride! Thanks for being willing to ride our storm out with us!
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!