With the exception of the post for the Halloween contest, it has been nearly a year since I’ve given an update on Caroline. I usually keep up to date with the group on Facebook but realized I needed to update here as well. So many things have happened since our last update when she turned one! I’ll try my best not to write a novel and keep to the main points.
Caroline turned one last May, and was doing extremely well with her development. She was saying a few words: “da da”, “Aden”, and occasionally something that sounded like “ma ma” when she would get upset. She had been working really hard in therapy and was standing next to toys or stationary objects for lengths of 5 minutes or longer, but was still needed assistance to get into a standing position. At the beginning of July 2014 she had her routine 6 month check up with her Urologist to have an ultrasound to check the status of her kidney reflux. During the ultrasound they found what they thought as a spot, or a lesion, on her liver. We were referred to her GI to have further imaging. After a CT scan and MRI, her GI determined that she had a tumor in her liver, that was about 1/3 the size of her liver itself. She was referred to the Cancer Clinic in Jackson, MS to meet with the doctors and for us to discuss what would need to be done regarding the tumor. They decided that surgery to remove the tumor was necessary, and only after it was removed would they be able to determine if she would need to undergo chemotherapy treatment or not. They removed the tumor on July 31, 2014. Her recovery from surgery went very well, and we were released to go home on August 5th. A week later we went back to discuss the pathology results, and we were told that the tumor was 30% cancerous, and that a short chemotherapy treatment plan was recommended. She began weekly chemotherapy treatments on August 14th, some of which were inpatient stays for a few days, and some that were administered through clinic visits.
During her treatment Caroline did regress in several areas of development. She stopped saying any words and rarely made sounds. She stopped being able to hold herself up standing and suffered some loss of strength. At one point she also started having difficulties swallowing, and we were about to have to begin discussions of feeding tubes, but thankfully the issue resolved and she went back to eating well. Yet through her struggles she kept her spirits high and was still just as happy as she has always been.
Toward the end of her treatment (she only had one clinic treatment left), on November 9th, she suffered her first seizure. It was completely unexpected! As you can see I even posted pictures of her from that morning in her Halloween outfit. Around 5pm that evening her seizure began, and she became completely unresponsive. We were taken to our local hospital via ambulance and she was intubated when we arrived. She seized for over 2 hours before they were finally able to stop it with several doses of seizure meds. She was airlifted to Jackson, MS to the hospital where she received her cancer treatment. Upon arrival she began seizing again but it was quickly stopped with meds. Later that night after they had settled her into the PICU, she began to seize one more time, but again it was stopped with meds. Thru the night her temperature rose to over 104, but finally began to break with alternating fever meds. She remained intubated for 2 more days, and then spent a couple more in the hospital before being released to go home. She began taking a daily seizure med and has not suffered any more seizures since. The doctors are unsure if the chemotherapy treatment was the trigger to the episode she had, or if it was due to WHS, and I suppose we will never know. Her doctors decided to end her chemotherapy treatment after her seizure, and thus far all her scans and lab results show no signs of cancer!
Now Caroline is 21 months old and doing very well. She is regaining her skills that she lost during treatment, and even acquiring some new ones. She is pulling herself to stand on her own now (a skill she just acquired today), and she is saying “da da” again. She has regained her strength and is getting stronger every day. She continues to amaze me with the sheer joy that she has inside of her. I can’t imagine having to go thru or experience everything that she has endured in her short life thus far, but she has handled it all with amazing determination and happiness. She has lifted me out of my darkest and saddest places because if she can still be happy despite all the other circumstances around her, then so can I.
I will try my best to update the website more often than I have been, but please feel free to find me on Facebook thru the group, and you can follow Caroline’s story and progress at Caroline’s Corner on Facebook!
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What a challenging season you all have weathered. I’m so excited to hear that given all that Caroline has faced, that she is making strides again and… is cancer free! That is amazing! Seizures are scary. Elsa has had three big ones. What med do the docs have her on? We started on Keppra and now are on Depakene. The strength in Caroline’s legs and grasp of growing vocabulary are an inspiration to me, as we are working on these very same physical and verbal skills with Elsa now, and she’s 3. Thanks so much for posting here as well as on Facebook!
Caroline’s experience left me speechless. I often read about a child’s struggle with cancer and can never make sense of it, but when a child like Caroline who already faces monumental challenges, is diagnosed with cancer, I am pushed beyond my capacity to wonder how a family would cope. You just told me how you do it, and your story is beyond amazing. There truly is no limit to what the human spirit can endure and still maintain hope. Thanks for sharing. Rochelle and I pray for Caroline’s health and recovery and for your whole family’s well being.