We made it to the oncology floor. Camden has been stable; maintaining oxygen saturation at 100% on 2 liters. Symptoms are not getting worse at this point. We learned that children who require intubation and ICU are the ones who received all of the transfusion, returned home and then presented with difficulty breathing. We are so fortunate we caught it early (he only received just over 1 ounce of blood). Thank you to his nurse Melissa who is ALWAYS on top of things and so diligent! I pray his body is fighting this and healing itself. His heart rate is trending down as well, so he is not working as hard to breathe. Thank you for your prayers... always..... xoxo
So radiation went well, but clinic took a different course. We came for a blood transfusion and 15 minutes into it, Camden's oxygen dropped and his heart rate went up. The transfusion was stopped and clinically he looks fine, but his oxygen saturation is low, requiring him to wear an oxygen mask. We are getting admitted. What happened today is extremely rare and when it does happen, the child is typically intubated and in the ICU. His chest xray revealed lung damage to both lungs, all caused from the transfusion. Please pray that these symptoms improve and not get worse. Praying this quickly resolves. Thank you to a dear friend of mine for letting us use her stroller board. I just assembled it tonight and we went up and down our driveway and road...it will work perfectly! This is a great solution to our 3-4 week problem! We had a long day today and we will have an even longer one tomorrow with radiation and then a 5 hour clinic appointment for premeds and a blood tranfusion. Camden will do great...I just have to be creative with ways to entertain Emma.
Please don't forget to check out the "Thirty-One" fundraiser if you haven't already...there are a lot of really cool bags and accessories. www.mythirtyone.com/shannonotr. You can copy and paste this link into your browser. If this link gives you a problem, please see the flyer (below) for this fundraiser and read the second comment posted (by me...) Please be sure to select "Camden's Crusade" as the fundraiser party. Thank you!!! Camden was walking with less of a limp today. I should have asked for you to pray for his legs sooner. Thank you so much to all of you who are concerned about me carrying Camden to his treatments. ❤ ❤ ......It really isn't that bad and.... I promised him I would carry him until he was bigger than me and then it would be his turn to carry me. : ) But honestly, we are okay and I got some really good ideas from all of you for when the "radiation fatigue" kicks in. It is too bad we are restricted from valet parking (bone marrow transplant restrictions...they do not want anyone in our vehicle that could potentially be sick). I was proud of Camden today, as we handed in his September/October school work that he worked hard on. We now have new lessons for the upcoming weeks. We also received a really cool email from one of our "out of the country prayer friends" that we are very excited about. With permission, I am hoping to share it with you.
We had a great weekend, filled with love and family things. Camden got a new remote control monster truck, which he thought it was hilarious to chase me and Emma around the yard with. Camden is slowly putting some more weight on after what he lost from transplant and tube feeds. He has been complaining of leg and belly pain again. This complaint causes me and Ron to silently panic, as this was the complaint he had back in May, but I feel that the leg pain is him recovering from extreme muscle wasting. It is very difficult for him to walk distances and he fatigues quickly. It is typically me pushing Emma in her stroller while giving Camden a "piggy-back ride" when we go to and from the parking garage to radiation. (With the mom versus therapist debate going on in my head). All of Camden's blood and urine tests are perfect. This week will be our first full week of radiation. So far it is going well. Love and prayers......
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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 |