Bob is the name of Hannah’s port. On April 19th the doctors were able to successfully remove Bob so that Hannah can now start living life as a normal preteen would. This is HUGE. This is a sign of how sure the doctors are this thing is behind her.
Since then, Hannah has been in her first play at school and even gone on an overnight field trip to Kennedy Space Center with her class! Everyone in her life is celebrating what a fighter and survivor she is!
Pray the cancer stays away. Pray her kidney function stays high enough to not need dialysis. Pray that when the times come for a transplant that it is available. Kidneys are one of the few transplants that can be done from living donors which greatly increases her odds.
I am so sorry for the delay in this update. I find myself struggling with how much or a merry-go-round this process creates. I am also struggling to find a balance between asking for prayers as soon as I need them, and then getting told results or information that is the polar opposite. With all of that said, thank you for your support and PLEASE know that with every post, my intentions are not to additionally place you all in turmoil.
On Friday, I was informed that there were two areas of concern. The liver was nerve-racking as this is a place where Wilm’s cancer can metastasis however they saw more concern with the location in the lung.
After Monday’s testing, I spoke with her oncologist at length and he confirmed that the liver IS CLEAR and that what they saw was an artifact. Praise God.
We went into length about what a potential lung tumor would look like in regard to treatment….and although, aggressive, it is something we can fight BUT NOT NOW!
Now on the lung, the area of concern showed inflammation that has not been seen on any other imaging studies. Knowing Hannah, this can be for many different reasons. It could be nothing, something, the start of something or another one of Hannah’s twists…..only time and rechecks to watch will provide us with true answers. We will be following up in my office 6 weeks.
Many of you have generously donated already on the Go Fund Me. I will be reaching out to you all as I have had NO intention of gaining through a false impression of our status. I am so sorry for this confusion. I am learning that I can only do so much, but I can hesitate before informing you all until we get a little more confirmation. Other radiologists are currently reviewing the studies and we should have some more answers soon.
All our love,
The Harger Girls
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!
Good evening from Arnold Palmer hospital! Hannah completed her third of five rounds of chemo for this admission and for all intents and purposes she is handling things incredibly!
This is a bigger update, so feel free to ignore if it is too much. Many of you continue to ask how you can help and as we move through this journey, more opportunities are arriving…..please read below.
This visit has proven to be somewhat flawless for Hannah; however, for me….it has become the pivotal emotional turning point. Every fear, every worry, every emotion that I have been feeling for nine years has reached a monumental high! It took me awhile to realize “WHY NOW?” Well, I know….this diagnosis and treatment is not only new to Hannah, it is new, period, no other child has had it or has her cancer the way that hers has grown. It is new to oncologist and nephrologists as they have never seen Hannah’s presentation EVER. I can not even begin to describe the fear that comes along with the knowledge that your medical team has no concrete evidence on how to fix your child.
What I do know…..when I approached Hannah’s oncologist, he said that EVERYONE is on her case and that he is personally doing/giving/handling Hannah’s medical anomaly EXACTLY the way he would any family member of his own. How blessed to be personally told those words of encouragement.
I found myself pressing for more and more answers until he said to me that every day we face, could lead us down a different path, so trying to obtain answers on an ever-changing condition will not only exhaust me, it will burn me out as a mom. That is one thing, I can not allow.
He did offer some suggestions…..get this girl out there playing with friends and having some fun, because her success rate at beating this battle is directly related to her positive attitude! For the first time ever, he said screw the consequences (exposure to germs).
So, over the course of the next week, I am going to try to schedule some fun getaways where we can do her homework outside of a hospital or off of a home couch in a “clean and safe” environment. Thank you for all of your offers, I will be responding tomorrow and scheduling what I can!
Next, I NEED YOUR HELP……playdates are needed and being prescribed by her doctor. From outdoor activities to things that can somewhat be germ controlled (without becoming neurotic), to anything that will make this child feel normal, is just as important as the chemo running through her body. So if you and your little ones have time for manicures and pedicures, movies, picnics, fishing, theme parks, dinners out, pottery painting or other creative ideas with Hannah’s friends, family, etc….please text me to schedule something. 407-401-0330.
Finally, I need to make our house a place that is safe and fun again on the outside. Between two hurricanes and two fights with cancer, I have let Hannah’s favorite part of her house go. Should you have talents, connections or can offer discounts to help me get my grass and seated fire pit area functional, PLEASE HELP. Again, feel free to text at 407.401.0330. I HAVE A FULL IRRIGATION SYSTEM AND I CAN DO AS MUCH AS POSSIBLE MYSELF. HANNAH JUST CAN NOT BE OUTSIDE DURING THE HEAT OF THE DAY. Hannah loves to sit in the grass in the morning and in the night, and right now we have weeds and ants.
Last and almost most important….if anyone knows of and could suggest a child psychologist, referrals would be appreciated.
All our love and respect!
The Harger Girls
Hannah update – it’s amazing how at the end of a hospital stay you are so focused on getting discharged, you can not think straight. You do not realize that despite the constant distractions during the stay, you also have the continuous support and comfort that comes with every worry. Today, I find myself so thankful for all members of Hannah’s medical team who not only cared for Hannah but took care of me as well!
This process has been long, intense and exhausting! I love being home but have, for the first time in life, realized just how lonely it is. I miss my chipper, hyper, and non-stop little girl! I HATE that my child or ANY child has their childhood disrupted in order to fight a battle that has no real concrete cure.
Not knowing is the worst! Not knowing when I can work again, not knowing if we will be ok financially, not knowing if this will be the finality of her 9.5-year fight, just not knowing is incredibly frustrating.
Today I pray for the ability to keep my faith strong, to trust in the answers I do not know, strength to keep Hannah’s spirits up and to make her understand that God’s got her!
On a side note…..please check our site for upcoming fundraisers….feeling blessed to have so much love!
Please take a moment to stop by 1000 Degrees Pizza this Friday night, the garage sale with Shelley Scott Nelson all weekend long and Ol’ Barn Junktiques of Geneva Vendors Heart for Hannah Friday and Saturday.
Thank you for loving us!
I cannot believe that I am finally getting around to updating you all. The past couple of days have been a whirlwind. Hannah started showing a small amount of visible blood in her urine on Sunday, and it only worsened on Monday. After the Hem/Onc floor got involved….all of her other specialists did as well, in order to find the source. Hannah’s hemoglobin was also lower today, making everyone eager to solve this ‘mystery’.
She has had numerous ultrasounds along with urine and blood labs. They worried about her Lovenox and post-surgical complications. As you can imagine, each specialist was looking for complications within their field and ordering their own individual tests. It has been a time where the labs and tests happen somewhat fast, but the results come slow.
As of this evening….her viral and infection tests are negative. Her ultrasounds look beautiful and there is no evidence of bleeding, PLUS her kidney looks amazing post-first surgery. We just got the chest X-ray results and they look like they are continuously improving from surgery. After all of the tests were completed, the blood in the urine seems less this afternoon…..ugh!
So, what does that mean….this may be a side effect of chemo, radiation and/or Lovenox? Ugh!!! Sometimes no answer is frightening/frustrating but that is all I can get.
Conclusion….we are lessening her Lovenox to a maintenance dose. She will begin her chemo regime tomorrow. She is getting two units of blood this evening. We will continue to monitor the urine and make sure it improves and doesn’t worsen.
On an aside, Hannah is also reacting to her pain meds with a rash, so we are also playing detective to see what we can do.
When Hannah relapsed in December, I told her we have two choices….fight this cancer short and easy and have it come back OR long and hard and beat Cancer once and for all…..Hannah chose long and hard. I believe it has taken me until right now to realize that we are in the hard part of this long journey. Things are not going to come easy, but at least we are still fighting!
The Harger Girls
Hannah made it to Hem/Onc, but not without giving the doctors another reason to worry. Hannah has large amounts of bleeding when she goes potty that began yesterday. The cause remains to be found; although, there are several different theories that will be tested today and every specialist is actively participating in finding the cause. In order to determine the cause, several procedures have been discussed, all of which will require anesthesia and sedation. Hopefully, by mid-day, we will have more of an idea of the approach they will take to discover the cause.
Nothing ever worthwhile comes easy!!!
This mama is struggling today, as the hits are starting to wear on me! Today we are praying for understanding, pain relief and progress!
The Harger girls