Day 6 has been by far the hardest for Camden. His pain is being managed by continuous morphine. A side effect from the megadose of chemotherapy has left him with mucositis (inflammation of mucus membranes in mouth, throat, and stomach) and also causes sores in these areas. Camden's does not have visible sores, but he cannot open his mouth and is in a lot of pain. We are fully relying on tube feeds for nutrition. Last night he vomited out his NG tube and it had to be removed and replaced. His ANC is 50, still declining to 0...praying his suffering will not last long, as it is painful to watch your child like this, but our strength, courage, religion, and faith prevails and will guide us through and Camden will quickly recover! Please continue to pray for his complete healing! Much love~
Day +5: Despite starting to feel yucky...Camden got up, took a bath, got dressed and played a little in the hallway! 13 days into the transplant process...engraftment takes place around day +10 through +14. We still have the most difficult week ahead of us. Praying....
Day 3: Another relatively long day on the transplant floor. Camden and I were shooting hoops this morning after our new child life friend brought us a basketball net for his bathroom door! Today Camden, Ron, and I made the decision to proceed with the NG tube in his nose. This will allow us to give him his oral medications through the tube instead of him worrying and getting upset about taking so many medications by mouth. In time, when he is not eating as much, it can also be used for nutrition supplementation. Praying those little stem cells are working diligently towards engraftment! Lets GO stem cells, LETS GO! Praying, believing, trusting, and praying some more.....
Prayers are being answered!! Nursing comment to Camden this morning, "WOW, I have NEVER seen someone run so fast down THESE hallways!" That's my boy. Thank you Jesus!! THANK YOU JESUS FOR ANOTHER PERFECT DAY!!!! xoxo
Our superhero is doing SUPER FANTASTIC!!! He amazes us daily! His dinner tonight was tacos and Italian ice! ; ) His ANC today was 700....so he still has to drop to 0 and recover to 500 and stay at 500 for 3 days to ensure engraftment (successful transplant)....then homebound to complete isolation for 100 days! Crusaders, symptoms are ALWAYS worse when counts are getting to zero, stuck at zero and recovering from zero, so please remain diligent with your prayers! As always, much love!!!!!
Day 0! The time for Camden's stem cell transplant is 12:30 and we are guessing it will take about an hour! Prayers, prayers, prayers!!!
Today, Camden continues to eat (3 single bowls of cheerios, and a hot dog with bun so far), he did his physical therapy, took a bath, took his medicine like a champ...we are surrounded by strength from God....BUT CRUSADERS....we need your help!!!! From the depths of my heart, I ask you to pray more and more diligently. Instead of one prayer, we are begging for more...we NEED more, more, more! Please ask everyone you know for prayers to Jesus for Camden's complete healing! According to statistics, Camden stands a 1% chance of getting through these next few weeks without artificial food, narcotics for pain, mouth sores, nausea and vomiting, etc! BUT, we believe through the power of increased prayer, Camden stands a 100% chance to overcome these side effects. Here is Camden holding his stem cells. His body will get these back tomorrow......Do it not for me, but for Camden!!!! Thank you!!!
Day -2 is a day of rest! No chemo today. Camden is disconnected from his IV pole and roaming freely within his room. He is still eating and drinking (which has slowed down some). The transplant doctor suspects within a few days he will require a feeding tube....Praying we prove them wrong, but realistic too!! I am okay with whatever Camden needs to get him through this with the least amount of pain and the most amount of support! I cannot praise the staff enough....it takes a special person to be an children's oncology nurse and we are thankful to have so many on our side...from Boston to Hartford!! Chemo resumes tomorrow and then transplant 24 hrs after....
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