Hannah Joy’s Story

Site created on June 16, 2020

On Friday night June 12, 2020  Chris called us at 11:30 p.m. to tell us that our 2 year old granddaughter, Hannah, had been admitted to Children’s Hospital in Pittsburgh.  Hannah’s health had been in decline, especially over the last few weeks. Her symptoms had been intermittent fever, body aches, and weakness. Hannah had been under the care of her pediatrician and her bloodwork had shown iron deficiency and low hemoglobin. She was prescribed an iron supplement and her iron did increase slowly and only slightly, not near normal levels.  At the Children’s ED, the doctor came in and seemed determined to figure out why Hannah was acting like she was. Chris and Amanda explained Hannah’s symptoms and also that this was the fourth time blood had been drawn in the past month.  She proceeded to examine Hannah and said something in the abdomen may not be normal and ordered an ultrasound. The ultrasound confirmed there was a mass (or two) in the abdomen. Hannah was admitted and was given a transfusion. We like to say the this provider is like Hannah's guardian angel- thank the Lord she was the one in the ER that night! she was delivered a thank you note within the next few days ;)

Due to the size location and other factors, it was not possible to remove the tumor surgically today. Biopsies of the tumor and her bone marrow were successful (results in 24-48 hours) and a line is now in place for chemotherapy which will probably begin tomorrow. After four rounds of chemotherapy Hannah will have surgery to remove the tumor and chemotherapy and immunotherapy will continue thereafter for about a year.  This has all occurred since Friday. As you can imagine  this has been overwhelming for Chris Amanda Hannah and all of us. (Abigail knows her sister is at the doctors, and that she is getting sleepovers at her cousins and with her grandparents. ) We covet your prayers. We can see God's hand in many ways already so please keep praying! I intend to journal so I don't miss or forget anything in the chaos, emotion and fog.  In closing, all Hannah wants is vanilla ice cream and her nana and pappy intend to stock her freezer in time for her homecoming from the hospital.  Thank you again and God Bless you❤️

Newest Update

Journal entry by Amanda Lynn

It’s spring and now we are busier than ever getting in all of the appointments.

So- the girls both had their teeth cleaned  a few weeks ago.  Hannah had her first cavity.  She’s been fortunate this far, as chemo is known to cause a lot of tooth issues.  She has an extra baby tooth in the front next to her k-9 tooth.  It’s between the extra one and the real one.  Would this have happened regardless? Probably 
Is the extra tooth causing some serious crowding? Sure is- so either way- she needs a filling.   Because they use giggle juice on kids for fillings - they were scheduling for August! So- unless I snag a cancellation- she will get her first filling in August. 

Both girls had eye exams and such. Hannah’s oncologist requested that she get dilation for hers so the doc could see everything. When I mentioned that Abigail was there due to frequent headaches, they suggested her eyes be dilated as well.  I have never had this done personally so I wasn’t sure what to expect from them.  It was a HOOT!  Hannah’s eyes are good. 

Today Hannah had her yearly checkup with the nephrologist. She was very prepared and refused to pee at home before we left.  She said she wanted to be sure she had enough pee to fill the cup 😂 
 
She filled the cup! The appointment went well and the Dr. said her urine sample came back the same as before.  Trace amounts of blood in urine under the microscope.  The labs and urine from October were all fine, and her scans of her kidneys were good.  So we can come back in a year or if anything should pop up before then.

I’m also happy to report that Hannah weighed 16.5 kg today (36.6 lbs). This is a huge step in the right direction for her. She’s been hovering around 34 lbs for about a year now. I’m so glad it’s trending upwards, finally. 

So what is next? 

May 15- audiology 
May 15- echocardiogram 

May 23/24- scans in Cleveland

Then we cruise into summer without anxious minds.  Maybe 🤔

We snuck upstairs to see Rilyn and Jamie! Please continue to think of them.  This chemo is really hard on her tiny body. It’s been such a long road. She will get scans shortly after this round of chemo to confirm whether or not it’s working on the tumor.  

Hannah’s rocking school, having play dates, and is generally just a silly kid. She had an art show at school and was so proud to show off her stuff.  This week is a dance at the school that Hannah’s looking forward to. 

Thanks for your continued support. 
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