Camden received such a special gift in the mail today. I have not seen a smile like this in a long time....Thank you to his favorite Star Wars character, Mark Hamill (AKA Luke Skywalker) and to our new friend Dave, for making this happen. The picture reads: "To Camden, May the force be with you!! Mark Hamill"
We had the most amazing hour today at the Masonic Temple, surrounded by incredible people with gigantic hearts. The members of the Brotherhood in Action organization presented Camden with a check from the breakfast fundraiser, which was held on February 23rd. We are truly touched by the support, many of you were involved in. We most sincerely thank all of you! The proceeds were split with another family and unfortunately they were not able to be there today. I wish to wait to post pictures and the check amount until this other family has the opportunity to experience their special day! We will forever pay it forward to the individuals in this organization who gladly welcomed us into their lifes and hearts. Stay tuned for updates.
March 30th....a day I will never forget! It is hard to believe that it has been a year! Last year on this day, Camden's leg started hurting. We would have never believed the road ahead of us would have been as challenging and heartbreaking and at the same time filled with moments of joy and happiness; as each prayer was answered. A year ago Cam's body was invaded with cancer that had eaten straight through his bones....today he is NED! Without my faith in God and YOU crusaders giving us your encouragement and prayers, support and love....our journey would have been much different. Cheers to many more March 30th's with Camden being NED! Feeling thankful beyond words..
Camden's Make-A-Wish has been declined. We are heart broken and disappointed, but moving forward....we want to come up with something amazing. His wish was to be an extra in the upcoming "Batman vs Superman" movie. Without the help from Make-A-Wish, avenues have been explored and contacts reached where we would be able to be "on set" of the movie. That was followed with, it is being filmed in Detroit (which I guess isn't the greatest area(?) I don't know....and also they added sets are usually pretty boring. Any thoughts or suggestions? We tried for a BatCam movie similar to Batkid in CA, but that didn't sound promising either. We want to use his wish for something over the top that Ron and I would not be capable of fulfilling for him. Suggestions? Thoughts?
We are LOVING being home! The 4 of us being nestled under one roof! A complete family! Camden has urinated out about 2 liters in the last 24 hrs....crazy right? But...his swelling has gone down significantly. He remains very weak but day by day he will build up his strength again. His eyes seem to be okay this time. Pupils are nearly equal and reactive. I scheduled an eye appointment before round 5...praying 20/20 all the way. We have a clinic appointment Monday and then looking forward to a quiet week. Round 5 is scheduled for April 20th, Easter Sunday....too many holiday's during/around hospital stays, but if our prayers continue to be answered...this should be the last inpatient admission!
Look at what we painted this week...it is a ceiling tile for CCMC....I hope they put it in the ceiling on MS8 or in clinic! If you know Cam, you know about his love for Batman.......
We are waiting to de-access Camden's chemo port and do a dressing and cap changes. Camden is soooooo puffy and swollen (he could not even open his eyes this morning). As the hours pass, it is getting better. He slept all night through to noon. I was getting nervous. He woke for maybe 2 hrs and now is back to sleep. The team here reassures me that he is medically stable and just exhausted. He should start eliminating more and more fluid. Looking forward to getting home and leaving round 4 behind us. Thank you for your prayers and support over the past 2 weeks. As always, much love...
Camden is getting ready for round 4 to start. We are going to try 10 hrs today so please pray we make it. We hit a few speed bumps this morning, but we are now moving forward. Praying this chemo will target any remaining cancer cells....please God guide us. Now onto what I can control: time to love up my fluid overloaded love bug...my mission is to make "his"day as best as possible! No news is good news today, i am putting my phone away! xoxo
[4:00pm] We had a good night last night after the last episode of hives....then we woke this morning with the news that his meds would run over 10 hrs instead of 20.....no sooner than the words were spoken, his hives returned head to toe. We are back to 20 hours. We have been hive free for a few hours and now they are coming back. Benadryl is at 6...so I am going to have to be creative with keeping him calm and entertained for the next 2 hours. 16 more hours! We got this (i hope)
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