As a parent with a sick child in the hospital, we have to be at their bedside 24/7. We struggle to shower. We struggle to eat. We struggle to call our mother, our father, our brother, our sister, our mother-in-law, our cousins, all of the neighborhood friends and families, etc. We struggle to show the love and appreciation we have for ALL of you as you wait to hear an update from us.  We feel horrible that we do not call each and every single one of you directly.  These updates are to help Stephanie and Gabe share Harlie’s journey right now with each and every one of you. Thank you for your continued support, love and prayers for Harlie.

As you know, Harlie was readmitted on March 23rd for extreme swelling in her feet and her ankles. She also had a very high heart rate and her blood pressure was going all over the place. She had something new too. She had a mass on her lower back.

Stephanie is updating us through her text messages to RUN.

 

 

 

 

 

 

 

 

 

 

3/24

Stephanie: “Harlie had extreme swelling in the feet and ankles. She had low blood pressure and needed blood transfusions.  She needed blood transfusions as well as that she has a high heart rate and high blood pressure.  They are puzzled. No tests are pointing to infection.  So tonight, we will get a x-ray to make sure her lungs are not swelling too.  They ordered an echo of her heart as well as some more blood work.”

3/25 morning

Stephanie: “Harlie woke up with a high fever of 102 degrees last night. They came in to get blood around four and have had a hard time with the IV. This is her fifth IV since we’ve been here. The doctors came in this morning and went over the chest x-rays with me. They looked pretty normal but there is a little bit of a collapsing of the lung at the bottom of the lung where she’s not breaking deep enough. Today we will get an echo gram on her heart. They think her heart might be a little larger so hopefully we will find out what’s going on with that. The J-tube has flipped, they saw it in a couple of the x-rays, so will be dealing with that as well.”

3/25 afternoon

Stephanie: “Had that echo done this morning…still waiting on the results of that. They’re going to do stomach and lower pelvis and hopefully they’ll be able to check out the back bulge as well as the stomach and the inflammation with that. They did test her last night and there was blood in her stool.  They’re not sure where the blood is coming from and if that’s why she’s low on her red blood cells and losing blood somewhere internally. GI is working with us on it.”

3/26

Stephanie: “Not a good day!! In a nut shell, MRI showed inflammation is either the same if not worse!!!! They did a skin biopsy today and it broke my heart!! Words cannot describe how painful the skin biopsy was for Harlie. Now they are taking her down to check for blood clots in legs.. I’m at my Doctor now but will keep you posted”

3/27

The RUN family went to visit Harlie along with a close friend, Becky, today. Harlie was in physical therapy while we were there. We were able to sit down with Gabe and Stephanie as well as Dr. Victoria Wilkins. I’m saying her name again. Dr. Victoria Wilkins. This doctor is EXACTLY what we needed for Harlie right now. This doctor is bringing light into Harlie’s world of darkness. This doctor is the PERFECT example of what every family living in a diagnostic odyssey needs for their child.

Dr. Wilkins took the time to read through Harlie’s extensive chart. She took the time to learn about Harlie as a person and not just as a patient. She is now personally invested in Harlie as well as the entire family.  She walked us all through the possible next steps. She bent over backwards to explain why things went the way they did previously. She helped us to understand why Harlie is not getting better yet. We talked again about how Harlie is falling into the 1% of a child with JDM, juvenile dermatomyositis, that is not responding to the treatment. She spent time with Stephanie and Gabe. She listened to their concerns and answered all of their questions. She made an impact on all of us sitting in Harlie’s room today. She will monitor all things Harlie going forward!  Thank you for coming into Harlie’s life! You are her Angel right now!

3/28

Stephanie’s biggest fear of leaving the hospital for even a few minutes is that something will happen with Harlie. When Stephanie ran home today to pick up a few things, she got the call. Something happened to the G-tube so they had to stop her feeds.  We are hoping that they will not have to redo the J-tube as well. She’s been vomiting again today.

3/29

Ava and Gina went to see Harlie today. Ava told Harlie a few jokes. We were able to get her to smile! It was good for Harlie to see another child that lived in the darkness and eventually made it out of the hospital. We all pray that Harlie will be herself again. The strong, beautiful, athletic child she was before this past fall. Stephanie showed us pictures of Harlie from before JDM. She showed us pictures of Harlie’s trophies. There were so many!!

 

 

 

 

 

 

 

 

 

 

 

​3/30 morning

Stephanie: “Good morning, Sweetie.  It was another long night. She had a lot of stomach pain.  She’s finally resting after they had to put another IV in. It’s been a rough 24 hours. I am sorry I didn’t send you an update yesterday. I started looking at pictures of Harlie before this all started.  I lost it…seeing how much she has changed and how life used to be.

A lot has happened today. They are going to give her the third Cytoxan treatment today. Although, her stomach is in extreme pain. They know she has internal bleeding but they cannot go in and do anything about it right now. They are watching her blood count. I will keep you posted.”

3/30 evening

Stephanie: “Its been a long busy day. We have been here a week now.  They have been giving her steroid pulses (1000 mg intravenously daily) since MRI showed her inflammation in her body from the JDM (juvenile dermatomyositis) has gotten worse even though they have been trying the new treatments ,Retuamab and Cytoxan ( chemo drugs):-(So, starting pulses weekly again as well as Methotrexate. She received her 3rd Cytoxan treatment today, which is so toxic they have to flush her body for 12 hours after giving it to her. It is really hard on her and makes her sick for days after. She has been having severe stomach pain the last couple days and had to have blood transfusion because she is bleeding internally. GI specialists says she is too high of a risk for perforation to scope her so they are watching her close. They think it could be from the disease leaky vessels and ulcer sores inside her stomach and GI tract like she has on her legs and arms.

She has had blood transfusions, MRI, skin biopsy, echo on her heart, chest X-ray, new IVs put in new everyday and multiple treatments. And, everything hurts.

Her blood pressure and heart rate have been crazy and she keeps getting high fevers. Her J tube that was put in 2 weeks ago in her small intestines has twisted up into her stomach. I am not sure what they will do about that yet. She has extreme fluid building up in her ankles and in her back that makes it too painful to stand by herself or walk.

I am going on two hours of sleep a night.  We are completely emotionally exhausted seeing her hurt so bad. The pain is unimaginable. Harlie is emotionally exhausted and we are worried for her. We need to give her some hope.

On a good note we have a new doctor that asked to be on the team (Dr Wilkins).  She has already been a blessing as well as our entire RUN family.

I would like to thank every for all of the support, love and prayers. Thank you for all of your visits and all of your donations, movies and gifts. It has been a rough week here at the hospital caring for Harlie with all of the tests and procedures she’s had to go through this week.  I am sorry that I have not had a chance to thank everyone or return phone calls.

We are getting Harlie settled in a new room.  This is the third time this week we have had to move rooms.

Please continue to keep her in your prayers.”

We all need to pray that Harlie recovers sooner than later. Please pray. Thank you.

Link to Harlie’s Facebook page: Help for Harlie