Boston Children's Hospital has a program called dec-a-room where transplant kids get to decorate their rooms however they choose! We gave suggestions of what Cam likes and they shop and provide the items! Camden and Mom colored Scooby and friends on his window the other night, it took us about 3 hours, but we had a blast doing it!! Another good day today! Chemo day 3 in the books...1 more day of this particular medication and then 1 day of a different chemo. We were told day 0 when he gets his stem cells is considered a birthday! Cam's new birthday is Tuesday, September 24!
A very special and heartfelt thank you to my mom and dad for their many weeks of caring for Emma during the last 5 months and upcoming 6 weeks! Many of you know about the 24/7 dedication it requires to love and nurture a 2 year old! We totally miss our sweet Emma Rose, but we are comforted knowing that she is being so well cared for. Another special and loving thank you to Ron's parents and brother Matt for all of their assistance, guidance, support and desire to make this most challenging situation as smooth and positive as possible! Without our family, dearest friends, and the endless support from all of you, we would be emotionally and physically in a different place. Camden is enduring day 2 of his chemotherapy. These 5 days of chemo will completely deplete every single cell in his body to the point that he WILL NOT be able to recover on his own (like with all previous chemo treatments). The only way his body will recover is by reintroducing his stem cells! This thought leads to many other scary thoughts, but as I glance across the room, I see an incredibly strong, determined, and admirable 5 year old boy with currently not a complaint in the world...taking on a battle much bigger than his size! He is surrounded by legos, books, games, movies, snacks, and most importantly his two parents who love him more than words.... I do not fully understand what we will face over the next days, weeks, months, but we are ready and will see him through to his full recovery! Thank You, God Bless You and as always, Much Love!!! We had yet another long day, but made it to the transplant unit and are settling in nicely! Today is negative day 7. Tomorrow will be the first day of his megadose of chemo, which will be day -6 through -1. Day 0 he will get his stem cells back. Praying this chemo does its job with the one last cancer spot and the bone marrow..with the least amount of side effects possible. Praying for a strong immune system, minimal pain, no fevers and no feeding tube! Feeling thankful for all of the wonderful people in our world....each and every one of you! We appreciate your kindness, your support and your prayers! Tomorrow starts another journey...praying for Camden's cancer cells to be destroyed in his abdomen and his bone marrow! Praying for a strong immune system to get him through these upcoming days/weeks!! THE LONGEST DAY EVER:
Results are in: Thank you GOD, thank you God, thank you God....as I sit on the floor holding my baby and crying like crazy.... His spine and leg have been HEALED!! His oncologist words were, "pleasantly surprised"..... The only bad news is: there is some residual cancer near the site of tumor removal, despite the entire mass being removed. The good news is that we knew he was getting radiation there, and that one spot is better than the potential 3. Our prayers have to shift: Pray that this next megadose of chemo before his bone marrow transplant will destroy those remaining cells and the <5% involvement in his bone marrow. PRAYERS ARE BEING ANSWERED CRUSADERS! PLEASE STAY WITH US and KEEP THOSE PRAYERS COMING! As always, MUCH LOVE and THANK YOU!! So we had a long day at CCMC today. Trooper Camden had a CT scan on his abdomen in the area where his tumor was removed. He had to undergo specific blood and urine testing in preparation for next weeks bone marrow transplant. He had his injection for his scan which is 8 AM tomorrow morning. PLEASE PRAY that the scan results are cancer free and the boney lesion on his spine and right leg are gone. Praying for no evidence of any cancer now that the tumor has been removed!! Whatever is remaining on this scan tomorrow will undergo radiation after the bone marrow transplant. Praying hard for a miracle. Join us in prayer tomorrow morning that those spots have been healed! Thank you! <3
Camden is having a good day today. Yesterday was a day of rest and recovery. Today, he is "slightly" more active. Less complaints. He hasn't had any oxycodone since last night at 10:30. We moved our clinic day from Thursday to today because I was worried about his blood counts, but his levels were in a safe range where he did not require a blood transfusion. Tomorrow he will have his injection in preparation for the MIBG scan on Friday at 8:00 am. Again, PRAYING FOR NO CANCER on this scan. I believe that his transplant date has been changed from next Monday to next Wednesday. Which will give us a little more time to fill him up with calories and build up his endurance and strength. We are staying strong and preparing to tackle and defeat the next battle. Praying, Having Faith, Believing..........
Sorry for the delay... We are living on a roller coaster. The delay was discharge and our 1.5 hour ride home : ) Yesterday's post said "We couldn't be any more proud!"...he proved us wrong!! We are happy to announce Camden kicked butt again...we ARE HOME. 5 days after an 8 hour surgery...we are home in good shape. Camden still has abdominal discomfort, but we all would! Another page turned! My moment of heart break and panic was his bone marrow biopsy came back positive. Through conversation with the transplant doctor, this could indicate requiring more chemo before transplant or coming off of his current treatment plan. My happiness of doing so well with surgery was crushed. I cried and said the rosary all the way home from Boston. So...initially Camden's bone marrow was >90% affected with cancer. Today's results are <5%......however present, he shows significant reduction of neuroblastoma in his bone marrow. I just spoke with his oncologist in Boston who has me resting assured. We are waiting to speak with his CCMC oncologist.
We have all week to pray for Friday's scans and for Camden to be ready for next Monday's bone marrow transplant! Thank you crusaders!! As always, much LOVE!! Progress made today! Cam smiled! The NG tube was pulled (2 more to go out of 6 extras). He has been able to drink about 10 oz of liquid and keep it in! We came down on his epidural meds. Fevers gone!! He got out of bed to the chair twice. Hoping to quickly transition to oral meds and get rid of epidural so he can start walking! He has an unexplainable rash on his stomach and back....has to be massive amounts of tape/bandages all over him (he has sensitive skin). Recovery and homebound!! |
MommyShe's going to keep everyone up to date about my progress. Isn't she the best mommy ever? Archives
September 2021
Diagnosis: May 9, 2013
Surgery: September 2013 Transplant: September 2013 STRICT ISOLATION UNTIL January 2014 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 5 years from diagnosis!! May 9, 2018 5 years from frontline!! June 9, 2019 IN REMISSION: pending (waiting for 5 year mark from maintenance). Benign Tumor: June 2019 |