Transplant Complication
Hey everyone!
Yes. It has been a long time. I decided that I wanted to make a video to catch you guys up, just due to time and the amount of information I wanted to share. Ariana was diagnosed with a severe case of VOD on July 30, 2025.
- Veno-Occlusive Disease (VOD): Rare, life threatening liver complication caused by high doses of chemotherapy and radiation therapy given before an allogeneic stem cell transplant. It develops in the first few weeks after a stem cell transplant and can be mild to severe. Small blood vessels that lead into the liver and are inside the liver become blocked. VOD Pediatric Reference Information
- Ariana's Treatment for VOD included:
- High Dose Steroids - 6 total doses of high dose steroids to help reduce inflammation.
- Soliris - ongoing treatment. Reduces the overacting complement immune system that impacts the epithelial tissue of blood vessels. Helps with cell breakdown management.
- Defibrotide - since Ariana was high risk for VOD (because of her transplant conditioning regimen), she has been on defibrotide since our admission for transplant. This is an ongoing treatment. This medication is the only FDA approved drug to treat VOD.
The following is what I had written while trying to post this update over the last few weeks. I decided to keep it because I didn't go over this piece in my above video. It's a bit outdated but still good information:
One of the biggest hurdle we were dealing with was vomiting. She had a lot of mucositis in her GI tract which did not mix well with her NG tube placement. She threw up 2 tubes, and then we decided to remove the tube, go on TPN and then give meds orally.
TPN stands for Total Parenteral Nutrition. It means that Ariana received all of her nutritional needs through her IV (bloodstream) rather than her NG tube (GI Tract). This mechanism is typically a bit more strenuous on the liver and kidneys, because the nutrition isn't going through its usual route. However, since Ariana could not stop vomiting, we thought it was worth a short time on TPN for her GI tract to heal.
She has since been off TPN for about a week and a half and is starting to eat more regular food and drink.
One of the biggest hurdle we were dealing with was vomiting. She had a lot of mucositis in her GI tract which did not mix well with her NG tube placement. She threw up 2 tubes, and then we decided to remove the tube, go on TPN and then give meds orally.
TPN stands for Total Parenteral Nutrition. It means that Ariana received all of her nutritional needs through her IV (bloodstream) rather than her NG tube (GI Tract). This mechanism is typically a bit more strenuous on the liver and kidneys, because the nutrition isn't going through its usual route. However, since Ariana could not stop vomiting, we thought it was worth a short time on TPN for her GI tract to heal.
She has since been off TPN for about a week and a half and is starting to eat more regular food and drink.
We want to continue to thank you all for your generosity you all have shown us. We feel your love and support each and every day, and it's especially felt on these days that hard. Please keep our little girl in your prayers and send all the healing vibes.
🎗️
Medical Interventions:
38 Chemotherapy Infusions
28 Oral Chemotherapy Doses
4 Lumbar Punctures (with Chemotherapy)
3 Bone Marrow Aspirations
9 NG Tube Placements
1 Central Line Placement
1 PICC Line Placement and Removal
1 Pericardial Drain Placement and Removal
1 Mediport Placement
4 Mediport Accesses
1 Oophorectomy (ovary removal for preservation)
1 Bone Marrow Transplant
15 Echocardiograms
49 Total CT scans, MRIs, X-Rays, EKGs, and Ultrasounds
38 Chemotherapy Infusions
28 Oral Chemotherapy Doses
4 Lumbar Punctures (with Chemotherapy)
3 Bone Marrow Aspirations
9 NG Tube Placements
1 Central Line Placement
1 PICC Line Placement and Removal
1 Pericardial Drain Placement and Removal
1 Mediport Placement
4 Mediport Accesses
1 Oophorectomy (ovary removal for preservation)
1 Bone Marrow Transplant
15 Echocardiograms
49 Total CT scans, MRIs, X-Rays, EKGs, and Ultrasounds
🩸
Blood Product Transfusions:
11 Red Blood Cells Transfusions
27 Platelet Transfusions
2 Pooled Cryoprecipitate Transfusion
9 Fresh Frozen Plasma Transfusion
11 Red Blood Cells Transfusions
27 Platelet Transfusions
2 Pooled Cryoprecipitate Transfusion
9 Fresh Frozen Plasma Transfusion
🫧
WICKED 🧹
29 times we have watched Wicked (since July 8, 2025)
29 times we have watched Wicked (since July 8, 2025)