(2p) Heading in for another ECHO. Praying clot is smaller. Still waiting to speak with surgeon.
(6p) As I prepare my list of questions (2 pages) for clinic tomorrow, I cannot help but know that we will most definitely get through this blood clot crisis! Praying the clot stays away from his coronary artery and we avoid the risk of a heart attack, praying it does not go to his lungs and we avoid a pulmonary embolism. Praying it never makes it to the brain and we can completely rule out a TIA/CVA. The internet is a double edge sword...it gives you information to help you formulate questions and it can completely scare you. I have protected and supported Camden and I have no doubt that his oncologist will answer my questions before I even ask them, but at this point...my gut feeling is that the lines stay in place until the clot is reabsorbed some and can safely be removed. I think the clot is too big to come out with the line. Anyone have any input on this? Also joining us is Cabela's with an amazing opportunity to go trout fishing in their portable pond. They will have a few other fun activities too. We have just over 100 crusader's joining us on the 19th. Many people are "wondering" why there is a need to register. It is truly only for us to obtain a headcount. For example: do we need 100 cheeseburgers or 300 or 500? If you plan on attending, please register. Thank you! Camden is scheduled to have his port and broviac lines removed on this Thursday! This is extremely exciting, but also very worrisome because of this clot in his heart. As always, I am putting out my prayer request: please pray that the clot is securely attached to his line and that it does NOT break free when the line is removed. The BEST case scenario is the clot comes out with the line and the clot is OUT of his body!!! Camden does awesome with his shots, he doesn't even flinch. Unfortunately, but fortunately...he has become accustomed to it all! Praying you all have a great upcoming week!!! Scan moved to 10:00. We cannot use his port or his double lumen broviac lines anymore due to the clot in his heart. We had clinic insert an IV this morning before coming to Hartford Hospital. That IV didn't work when we got here. They had to do another one. Now we wait until 10:00. Cam is in good spirits, watching cartoons. God is carrying me and Ron! (7:30p) OK! We are finally home and just finished our quick take out dinner. I think we have come up for air. The cardiologist could not rule in or out "what" the mass is and immediately sent us up to oncology. (our home it feels like). In discussion with Camden's oncologist, it is believed that the mass is a "blood clot." However, a blood clot in your heart could be very dangerous, especially if it travels next to the lungs. This could be a fatal disaster as Camden would more than likely than have a PE (pulmonary embolism). The clot is 1cm, which is pretty big (just under a 1/2 inch). So where did the clot come from? More than likely it has everything to do with his lines (either port or double broviac). Typically these lines end before entering the heart and Camden's ends inside his heart. I knew this, but nobody ever told me that it shouldn't be in the heart. So THANK GOD it is a blood clot and not CANCER. Tomorrow's PET SCAN will seal the deal on all of the results from this week. With all of our prayers, we will prayerfully come out of this very stressful week with NED!!!! *NO EVIDENCE OF DISEASE!! So Camden starts blood thinners tonight. I will give him a shot twice a day for the next three months and of course we will be closely monitoring his blood levels. I have to watch him closely for symptoms that the clot may have travelled. God, clear this clot.
AMEN to CLEAR BONE MARROW. Camden is our love and our rock star. He will beat this. THANK YOU ALL....SO VERY VERY MUCH...you are carrying us through this journey with your endless support. I hope to thank you personally at Camden's party. (5:45p) Ok Crusaders: are you sitting? You just will never believe this: we just had his ECHO/EKG and they found a mass in his heart. Instead of crumbling to the floor...I am rising up...more prayers please! On a good note: HIS BONE MARROW IS CLEAR OF CANCER!!! (7:30p) We had a very long day. Camden did awesome with his MIBG scan AND his bone marrow biopsies. We should get the bone marrow results on Thursday. We pray for all negative results. We received the results on yesterday's CT scan which showed new areas of concern on his spine. : ( In search of correlating results, the MIBG did NOT reveal any spine lesions or acute changes (meaning that the abnormalities on the CT scan could be healing bone, scar tissue, changes in bone from radiation, etc.) HOWEVER, there was 1 area on the MIBG scan that leaves concern. : ( It was in his intestine. BUT this did NOT show on the CT scan. It could be build up of the MIBG isotope in his stool. (Praying that is all it is)!!! 2 tests done and both show different things, but it is good that they both aren't confirming an obvious problem. Can you imagine the emotional roller coaster? So where do we go from here? We need confirmation that neither concern is relapse. So we go for a PET scan. Please pray for Camden's spine and intestines. We have to wait and get our appointment. PLEASE GOD NO RELAPSE, please God heal Camden!! Please, good biopsy results, and a clear spine and intestines on the PET scan!!! Thank you everyone for your prayers and support!! Our journey continues... |
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 |