Tomorrow is the 1st day of our next 2 years (27 months). Tomorrow Camden will take his 1st DFMO pills. This is a medication/chemo that is used to decrease the high level of polyamines associated with cancer (neuroblastoma). DFMO has kept 28 out of 30 children in remission, which is HUGE for neuroblastoma!! The study is small, but our goal is a lifetime of remission. Potential side effects are hair thinning, worsening hearing loss, low blood counts, and of course others (but less involved than all other medications). Please pray our next journey is smooth for Camden. Please pray we avoid complications and side effects. And while we are praying, add the resolution of the blood clot. Thank you! Hope you have a wonderful Sunday and week ahead!
(3:50p) Finally discharged! So long CCMC...see y'all again on Monday!!
(2:30p) Waiting to get out of here....we are exhausted, bored, and anxious to start this new chapter.....
This post is a little late, but we are still inpatient. Camden had to get his Lovenox shot this morning and unfortunately he didn't get it until 10am, so we have to wait 4 hrs until after the injection to check his Anti-Xa level (to determine if we need a dose adjustment). Cam is doing well. He is up and moving. He hasn't required any morphine today. We are literally just stuck here until 2pm for a blood draw. In the scheme of things, this waiting period is nothing and we are doing great! We are beyond PROUD of our superhero!
(1:30p) We are in recovery. All tubes are OUT! The clot was not disturbed and remains in his heart. Cam has to remain on flat bedrest for 4 hours because of the need to use a cardiac catheter to remove the line. A piece of the line nearest the clot actually broke off inside his heart. The cardiac catheter went in through his groin and up into his heart to retrieve that piece. He is intermittently getting anxious and is not overly happy about not being able to sit up or move his right leg. Due to the more invasive procedure, we will be spending the night here at CCMC for observation. We are still in the PACU, but should be heading up to oncology in another hour. Thank you for your prayers!
Plan A failed. Moving onto plan B. The line could not be removed as expected. An interventional cardiology has been called in from Hartford Hospital. We just signed consent for them to make an incision in his groin and remove the remaining line from his heart this way. The intent is to NOT remove the clot, but only the line. Please pray. This is much more invasive than we hoped for.
(3:30) Surgery is on for tomorrow for 8:30 am for the port and line removal. We are waiting for our arrival time. The lines will be removed while cardiology is performing an ECHO. All emergency protocols are in place, including interventional radiology if clot retrieval is indicated. Please pray with us for a safe and successful surgery. Tomorrow marks a new day in our journey. Feeling thankful for a lot of things on so many different levels.
(5:30p) Ok....we just got home! Camden's oncologist spent at least an hour with me today, answering all of my questions. We connected with the surgeon and repeated the ECHO in cardiology. It appears that the clot did reduce in size, if at all. The cardiologist was with me from 3:00-4:30. He "guesses" (using that term loosely because he was sitting with me at the monitor, not analyzing and comparing studies) that the clot is approximately 3/4 cm as compared to 1 cm. We tried to isolate the lines by using a saline injection (thank you Melissa, RN) to see which line is associated with the clot. It appears to be the broviac lines and not the port. BUT with that being said, it really looks like the clot is attached to the eustachian value within the right atrium. Oncology and surgery still need to review the results of this ECHO and develop a plan. I foresee us going forward with surgery on Thursday, although that decision will be left up to the professionals. I will be reconnecting with surgery tomorrow. I will update you when I know more. In the meantime we pray for Camden's safety and optimal outcomes of this procedure.
She's going to keep everyone up to date about my progress. Isn't she the best mommy ever?
Diagnosis: May 9, 2013
Surgery: September 2013
Transplant: September 2013
STRICT ISOLATION UNTIL
Radiation: November 2013
Antibody: January 2014
END OF TREATMENT
June 9, 2014
DFMO Trial: June 2014
(27 months of DFMO)
**FINISHED ALL TREATMENT
JULY 25, 2016