Adalyn is in REMISSION 1-17-13
Adalyn went to the eye doctor on September 21st for a routine exam. It was told to Theresa that she had tumor in her right retina. On the 24th, Tim and Theresa were told the devastating news that their 9 month old has Retinoblastoma, a rare pediatric eye cancer. Follow along as Adalyn takes on Childhood Cancer and beats it!
Adalyn was born on Saturday December 3, 2011 and she was perfect! When she was a day old in the hospital, Theresa had noticed that her left side of her body would tremor. She pointed it out to the nurse and all she got was..."oh she looks perfect to me, she is just trying to get used to being outside the womb."
For those of you who know Theresa well knows that she wasn't going to just settle for that.
When Adalyn was 3 weeks old she started having issues with eating, she was always gagging and choking when she would eat and she would look like she was drowning. She was brought into Children's for a swallow study and was told she was aspirating into her lungs so she would need to be on thickened milk. No problem, Tim and Theresa could handle that!
At 5 weeks old she was hospitalized in the PICU (Pediatric Intensive Care Unit) for a week with RSV. She was having periods of APNEA so that is why she went to the ICU. During that time she had a strange episode of arching her back, getting stiff as a board and turning her head in a weird position all while making a high pitched cry that Tim or Theresa had never heard before. Theresa told the nurse that she couldn't bend Adalyn and that something was wrong so a doctor came in and looked at Adalyn and said..."Oh that is reflux, she can't handle eating right now so we will give her an NG Tube later to get her to eat" So that begins the journey of the WRONG DIAGNOSIS.
At about 13 weeks old, Tim and Theresa noticed that Adalyn just didn't act like normal "babies" should. She wasn't laughing, rolling over, grabbing at toys, playing with her hands/feet, and sitting still. She was always moving, she couldn't control her body, her head was always bobbing and she was STIFF and RIGID. When you held her she would keep her back arched like a seal. There was no way of manipulating her body to look any other way. She also became very inconsolable, it was like she was forming colic when babies normally start growing out of it.
In the beginning of April 2012, Theresa called Gillette Childrens and asked to have Adalyn seen by a neurologist because she was suspecting Infantile Spasms. Adalyn was immediately seen the next day and had a 4 hour Video EEG completed. Luckily, there were no seizure activity seen on the EEG but it also wasn't quite normal. She also failed her neurological exam, she was keeping relexes that newborns have that she should have outgrown and she was not getting reflexes that 4 month olds should have. She also has increased tone in her extremities and deep reflexes. She is very stiff and arches her back. She keeps her left arm in weird positions (remember the side that was tremoring, see, Theresa knew something from day 1!) She was scheduled to have an MRI on April 24th.
April 21st...Adalyn wasn't eating very well and had a fever. This isn't anything new to Tim and Theresa but knowing that she had her MRI on Tuesday and would be sedated for it, Theresa took her into Children's to see if she had a cold/ear infection/ect. The doctor came in and told Theresa that Adalyn would need to stay overnight because she was "clinically dehydrated" and also was a "Failure to Thrive" She had went from the 75th percentile to the 40th percentile in 1 month. Well the overnight stay became a 10 day hospital stay. During which, Adalyn had seen every specialist known. The MRI did happen and her brain looked normal, they said that they still cannot tell us if it "works" though. Only time will tell us that.
They believe that Adalyn has Cerebral Palsy. She is a medical mystery though to the Neurologists at Gillette since she can flucuate her tone from low to high. She doesn't lose her tone while she is asleep which means Cerebral Palsy because it doesn't go away with sleep. She also has low tone in her mouth which is what is causing her not to want to eat. She had a G-Tube surgically placed on April 27th. That will stay in until she no longer needs it for 3 straight months (that includes medications)
We have a LONG road ahead of us. We ask that you please keep Adalyn in your prayers, along with Tim, Theresa, Hannah and Benjamin. We are "FINDING ADALYN" we are learning "who" Adalyn is and "how" Adalyn will be. Either way, this "IS" Adalyn, it makes Adalyn, Adalyn!
Surgery and Results
Mar 24, 2014 1:43pmAdalyn had her surgery to remove the mass in her thigh on Thursday, March 20th. Surgery went well and she was actually able to get into the OR on time :) Write that one down in the record books!
The morning started with her getting an ultrasound of the leg so the surgeon would know where he was going in. They marked the leg and she thought that was pretty funny. She giggled when they were writing on her skin and even told the surgeon that he could color on her leg when he went to initial the spot! I was so thankful for the tech that did the ultrasound because she was the one who did it in the recovery room when it was noticed on February 27th. They wanted to have her be sedated for the ultrasound but the tech fought for us and stated that Adalyn did great before and didn't need to be sedated for something that took at most 10 minutes to complete.
The surgeon told us that he would come out right after the surgery was completed and that he hoped that he would come out and tell us that nothing was there and that he only had to explore her muscle. That wasn't the case though. Around 1 hour after the surgery began, he came out and told us he removed around 2 1/2-3" of muscle and that inside the muscle they found the tumor. It was around 1/2' big and he said that they would do the biopsies on it and call us with the results. He did say that it wasn't relapsed Rb so that was amazing to hear but we still had to wait for the biopsy results to see if it was a secondary cancer or whatnot. He said that she would be in a lot of pain since it wasn't a minor procedure but would be going home on Oxycodone (a liquid form) and that he put numbing cream inside her incision. Her incision is around 3 inches on her thigh so it is pretty big for a little girl.
We were able to go home later that morning and were even able to make it to Hannah and Benjamin's spring concert at school that afternoon! It was a surprise to Hannah and Ben that we were able to make it and you could see their faces light up when they saw that we came! They both did amazing at their concert as well!
Thursday was the most painful day for her. She needed the narcotics around the clock and would cry when she tried to walk. By the weekend though she was back to her normal self and would only say owie when you bumped it! She is so tough.
On Friday, I was at Target, getting a prescription filled for her since she is still battling an ear infection that doesn't want to go away. While I was there I received a phone call from her Oncologist and he said that he just got back from talking with the Pathologist about Adalyn and that the pre-liminary reports show that Adalyn DOES NOT HAVE CANCER AGAIN! I started crying in Target! He said that she did have a bad reaction to the DTaP vaccination that she received in October. If you remember, I posted that she went to the ER 48 hours after getting that vaccine for a high fever and refusing to walk on her leg. He said that she had an inflammatory response to the vaccine and that it took on the characteristics of a tumor. We are still waiting for the final report but it isn't cancer! He said that she will need to have more testing completed and will probably need to see Immunology to figure out what she reacted to and to see if she can have that vaccine ever again.
She is back at daycare today and seems to be doing wonderful! Thank you again for all the love, support and prayers these past few weeks! We love you all!
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