Saturday, January 1, 2011

Summary of events (TL;DR version)

Ryan and Ashley's baby girl Mallory was two months old when she was diagnosed with Neuroblastoma cancer.


Timeline:

Monday November 28, 2011
Mallory's Pediatrician feels lumps during regular two-month checkup; orders ultrasound.

Tuesday November 29, 2011
Ultrasound reveals two, maybe three tumors. Oncologist called in, orders CT scan.
Oncologist informs us that Mallory has Neuroblastoma cancer.

Wednesday November 30, 2011
Echocardiogram of the heart to examine IVC. Surgeon doesn't get enough info, orders another ultrasound. Surgery plans are setup for Thursday

Thursday December 1, 2011
Goes under general anesthesia, has radioactive bone scan performed, has broviac central line installed, has left side adrenal gland and tumor removed. Did not require NICU; spent night in her own room.

Friday December 2, 2011
1st blood transfusion.
Results of bone scan came back normal; no spread into the bones.

Saturday December 3, 2011
Relaxing in room, recovering from surgery. No other news today.

Sunday December 4, 2011
No new news. Just relaxing and recovering. Anxious for test pathology report tomorrow.

Monday December 5, 2011
No path report yet. Patiently waiting.

Wednesday December 7, 2011
Got to go home! Meeting to discuss test results pushed back to next week (they are planning on Friday).
Started SSKI (Iodine) drops in preparation for MIBG scan

Thursday December 8, 2011
Received MIBG injection

Friday December 9, 2011
Propofol sedation, bilateral bone marrow draw (aspirate). MIBG scan performed.

Friday December 16, 2011
Met with doctors; official diagnosis: Stage 2B Neuroblastoma, intermediate risk. Planning 4 four rounds of chemo to neutralize right side tumor, no plans for surgery at this time.

Wednesday December 21, 2011
Weight 5.8kg Height 63cm
Admitted to hospital. Began round one of Chemotherapy. Received 100mg Carboplatine, 23mg Etoposide. 1mg Zophran every 6 hours. 5mg benadryl.

Thursday December 22, 2011
Round 1, Day two. 23mg Etoposide.

Friday December 23, 2011
Round 1, Day three. 23mg Etoposide.
80ml blood transfusion.
Discharged from hospital.

Thursday January 12, 2012
Dye study performed on double-lumen broviac, fibrin sheath formation,
Chemo Round 2, Received 110mg Carboplatin, 200mg Cytoxan, Mesna 50mg, Doxorubicin 6mg, Mesna 50mg (again), 2mg Zofran, 3mg Benadryl, 2mg Decadon

Friday January 13, 2012
Discharged.

Monday January 30, 2012
CT and catecholamine test peformed to analyze progress. RH adrenal tumor is growing, activity showing up on liver now too. Catecholamine is down.
Scheduled for surgery to biopsy RH tumor and replace broviac.

Thursday February 2, 2012
Admitted for surgery. Dr Robertson performed biopsy on RH adrenal tumor, removed existing broviac and inserted a new one.
Dr Robertson noted "a lot" of spots on the liver.
Morphine throughout the night.

Friday February 3, 2012
Inpatient, recovering from surgery. Multiple* does of morphine for pain.

Saturday February 4, 2012
Inpatient, doing better. Off the morphine, just Tylenol now.

Sunday February 5, 2012
Inpatient, hemoglobin was 8.2, so they did a reticulocyte count. Gave her a transfusion.
Discharged in time to see second-half of Superbowl (Giants beat the Patriots!)

Friday February 10, 2012
Met with Oncologist; Mallory is now officially a Stage 4 cancer patient.
Admitted for new, stronger Chemo (Chemo 2.0!)
Chemo Round 1, Day 1. Topotecan and Cytoxan.
(Reset chemo cycle count due to new protocol)

Saturday February 11, 2012
Chemo Round 1, Day 2, Topotecan and Cytoxan.

Sunday February 12, 2012
Chemo Round 1, Day 3

Monday February 13, 2012
Chemo Round 1, Day 4

Tuesday February 14, 2012
Chemo Round 1, Day 5

Wednesday February 15, 2012
Discharged

Sunday February 19, 2012
Went to ER due to Mallory running a fever and being lethargic and not eating. Got admitted.
Multiple antibiotics administered.
Blood transfusion.


...waaaaay behind on updates on this page, sorry!


Friday, May 18, 2012
Declared NED (No Evidence of Disease, aka in remission)!


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Donations


UPDATE:
We are currently not requesting any donations of any kind.

If you feel so inclined, please send donations to Helen DeVos Childrens Hospital. They need all the help they can get.


We have received numerous requests for a way to donate, and we weren't sure how to react. We have received so much love and support already, and we appreciate all of it.



We didn't know how to do this without sending the wrong message. So at the request of several people, we have generated a PayPal account to receive donations.


All donations will be used in the care and support process for Mallory. We will not publish names or amounts of donations, unless that is your wish.


If you leave your name and address we will send you a personalized thank-you with a picture of Mallory.





From the bottom of our hearts, we thank you all.


-Ryan & Ash (and Jillian and Mallory)