Update on the next step: Camden's bronchoscopy has been switched to Monday. We arrive for registration at 10:30am which after that he will go under anesthesia and the procedure is scheduled for 1 hour. I am feeling so happy, grateful, thankful, pleased, etc, etc, etc, that his symptoms have been improving. Praying the test reveals just that....RESOLVED lung issues!
A special thank you to those who have inquired about an address for sending Christmas cards to Camden. Please use the Camden's Crusade address:
PO Box 536
Tolland, CT 06084
Camden (and family)...had a great day! I am happy to say that his breathing is improving and his oxygen levels are now on the higher side of the 90's. His heart rate is trending down also, remaining only slightly elevated. We continue to pray that the antibiotics are the cause of this improvement and that his lungs are healing. We are extremely thankful for our kind and very generous neighbors who are allowing us to utilize two of their portable air purification systems and who will also be researching the "just right" humidifier for Camden's needs while still minimizing the risk of mold, etc! A heartfelt "thank you" to you!!! We put up an artificial Christmas tree and we are NOT liking it much...its really small : ( so i think we will be searching for an alternative artificial, as we cannot have a real tree this year...
Camden, Emma, and Daddy are making cookies ; )
We hope everyone has a great weekend!!
At CCMC, praying his blood levels have recovered and that we do not need a blood transfusion today (x2).
NO TRANSFUSIONS...VERY HAPPY TO BE HEADING HOME!!!!
Today and everyday we are thankful for GOD. We are thankful that he watches over us and protects Camden. We are thankful for our beautiful family and the abundance of friends who support us, love us and help us through the most difficult challenges. Today, we celebrate Thanksgiving for the first time ever as a family of 4, instead of two separate dinners with our families. Despite cancer keeping us in isolation and separated from our families...it can't stop the love. This picture is a reflection of the love and support that we carry in our hearts everyday...Our families stood in our front yard today overlooking me, Ron, Camden, and Emma while holding hands and saying grace. We are thankful for that moment. We love you!
Our CT scan results of Camden's chest remain inconclusive. It showed 2 potential etiologies for the reason that Camden has been experiencing shortness of breath, low oxygen saturations, and increased heart rate. The waters are muddy and I have been cautious in expressing the potential diagnoses, but at this point in time, there is nothing to hide and protect him from, as we continue to need your prayers daily. There is a very serious and life threatening diagnosis called pulmonary VOD (venous occlusive disease). This is a progressive disease with no cure and could potentially lead to a lung transplant. These conditions with his lungs and heart stem from the chemotherapy medications that he had at such a high intensity in such a short period of time. Evidence also points to potential pulmonary hypertension. Again, further testing is required to pinpoint what exactly is taking place inside his small, innocent body. Next Tuesday Camden will undergo anesthesia again and have a bronchoscopy and another procedure where they aspirate lung secretions for cultures. If the bronch and the cultures remain inconclusive then we are approaching a lung biopsy. In the meantime, they have ordered us home oxygen for him to use with activity and to wear at night. Also, they have started him on an antibiotic with our every hope that it is an infection that is causing temporary havoc in his lungs. Camden graduated from radiation today. The radiation team was fabulous and we truly appreciate the daily TLC that was received from Kylie and Mike and if you are out there reading this, we apologize for being a wreck today, but please know how important your daily care was to us. You both are special people and we will for sure visit time and again. Crusaders, our journey continues.
Addendum: and his hemoglobin and platelets are low, requiring us to have them rechecked on Friday, which means 2 pending transfusions...
No updates Crusaders...
Good night...tomorrow is another day.... His last radiation (20) is at 9:30, clinic for labs at 10:20, and pulmonary appointment at 11:30. Camden will also be having additional tests done at this appointment (pulmonary function tests, etc).
Just leaving the hospital! Camden is sleepy from anesthesia, but he did a great job! Now: the 2nd hard part, waiting for results. Thank you for the prayers...hopefully there will be an update later today! xo
Hey last minute shoppers: the FINAL 31 bag order is going in THIS TUESDAY! Shop the catalog and help out Camden!!
Email Shannon: firstname.lastname@example.org (please see older post for flyer details)
We had a really good day...except for some nausea/vomiting, fatigue, some throat pain and shortness of breath..... I guess there is a long list; but it was still good. His eyelashes and eyebrows are starting to grow in AGAIN! He is getting lotion put on his feet by daddy right now! And he wants me to add that he is "excited for Christmas!!!"
Tomorrow is day 19 of radiation! Our little superhero is conquering another treatment! GO CAM!!! Praying it did its job!! Radiation is at 9:30 and then we are off to radiology for anesthesia/intubation for his testing at 10:00, procedure at 11:00. Praying for treatable results...although we may not hear results tomorrow! Please keep us in your thoughts and prayers! I will give you an update when I hear something!
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