Can I just tell you that I love this family?! I have been looking forward to Pax’s session for a long time and it was a gorgeous night for a session on the golf course at Cresticke. Pax wasn’t quite ready to sit on his own at his session…..but mom sent me a photo 2 days later and, what do you know. Sitting all.by.himself. Babies are stinkers like that.
Paxton was born in February, 2017 and I got to photograph him for his newborn session. I died over his eyelashes. The boys always get the longest ones! You can see all his newborn photos HERE.
Lindsay said Pax was a very grumpy baby, crying constantly, not sleeping for longer than 20 minutes at a time, and just not easily consolable. She was patient, hoping he would outgrow this, but when he didn’t seem to get any better. At 4 months, she expressed her concerns with her pediatrician at his well baby visit. Some other worries Lindsay and Jared shared were slight discoloration in his right eye, lack of red eye reflex on his night camera in his room, and failure to follow/track objects.
At that visit, a whirlwind of a wild ride was about to begin for the Johnson family, Jared, Lindsay + Paxton. They were informed toimmediately take him to the eye doctor, then again after that, to a specialist in Peoria, and again after that, were rushed to Chicago. Three days of eye appointments across central Illinois, led this family to the last thing they wanted to hear. Paxton has a rare form of childhood cancer in his right eye….Retinoblastoma. They had to make the most difficult decision of their lives that day. The following day, just 4 days after his routine 4 month check up, Paxton’s right eye was removed. They were informed that he had already lost vision in that eye, and to relieve pain and pressure for him (so he wouldn’t be crying constantly), the best thing to do would be to remove his eye, which would also eliminate the tumor.
Paxton also had some genetic testing done to determine the cause of the cancer. The results revealed a bi-lateral, hereditary retinoblastoma. Meaning it was in both eyes and was a gene mutation that will continue to be passed on through him.
The oncologist recommended 6 rounds of chemotherapy. Since they also discovered some spots present on his left eye, they wanted to incorporate laser treatment for that side in hopes of saving his sight. They placed a port in Paxton’s chest for chemotherapy treatment. Paxton and his family will travel to Chicago every 4 weeks to undergo chemo and laser treatment, paired with eye exams, making sure the cancer isn’t spreading and that it is in fact, hopefully clearing up.
Paxton was also fit for a prosthetic eye, which they say he keeps in for a maybe total of 2 hours max during the day. He will be fitted for a permanent one when he is three —- they learned a child’s eye socket is completely done growing by this age. Interesting fact of the day.
The good news is, since the surgery, Paxton has been all smiles, is sleeping well and beginning to hit all his milestones!
Lindsay and Jared have learned a lot on this short, but intense journey and I’m sure they will continue to learn much more. They have been fortunate enough to meet some other families going through the same thing, so they have someone to reach out to when they have questions. Paxton is, by far, one of the toughest babies I know. He has endured more in his short life than most of us could think of, but he is also one of the happiest babies I get to see.
***If you would like to support Lindsay, Jared and Paxton, you can purchase a t-shirt and/or donate to their family. All proceeds are being used for medical expenses and travel to and from Chicago for Pax’s treatments.***
Buy a shirt and spread the word and raise awareness!