NF

Most of you already know, but back in October, Kendall was diagnosed with Neurofibromatosis-1, based on several "cafe au lait" spots that she has as well as some freckling in her underarm. Although we had a diagnosis, we also requested that the blood test be done. That took about 6 weeks, but came back confirming that she did in fact have it.

Neurofibromatosis-1 (NF-1) is a genetic disorder that can cause small benign tumors under the skin. From what we understand, most cases are fairly mild, and while it will mean lots more doctors appointments for her, it hopefully won't be something that will change her life in a huge way.

In November, we took her to see an pediatric ophthalmologist, so they could check her optic nerve. Luckily, they did not see any sign of the optic nerve gliomas that they were looking for. We will continue to follow up with the Ophthalmologist on a yearly basis.

Mid-January, we went back to Children's Hospital to see the NF specialist. Dr Schorry is really nice, and recognized Kendall from a quick meeting at our diagnostic appointment. She looked Kendall over and asked us lots of questions, and in the end said that she's looking great! We will see her every six months, and at our next appointment in July we will schedule Kendall's MRI. They will have to sedate her to do a brain scan to check better for those optic nerve gliomas. If they find any, or notice any thickening of the optic nerve, then we will make a plan to continue monitoring by MRI yearly or even twice yearly, but if everything looks normal, she won't need any more MRIs!

Besides the MRI and the checkups, all we do is watch and wait. There is no treatment, nothing that we could've done differently, and nothing we can do to make things better or worse - and there is no way of knowing now how severe her case will be. We are so lucky that Cincinnati Children's Hospital has such a large NF Clinic, one of the top ten in the country, and that it's so close to us.

The good news is that Kendall isn't showing any signs of tumors, and she doesn't have any obvious bone abnormalities. So, just like before the diagnosis, she is a very healthy little girl! There is still a chance that she will develop neurofibromas at some point in her life (the benign tumors), but hopefully she won't have many and maybe that'll be her only symptom.

It has been really hard to hear the diagnosis and think about the possibilities, but I know between our friends and family we will have a lot of support. Kendall is still our perfect little girl, and that won't ever change. We just hope that this doesn't make things harder for her as she grows up. She has such a positive disposition right now, and as long as that continues - she won't let this affect her in any way.

At this point, Brett and I are far from experts, but please feel free to ask us any questions that you have! And if you're going to do any searching on the internet, please stick to the reputable sites and remember than most things you see are worst case scenarios. The ctf.org website is a very good resource for information.

If anyone is interested, Kendall and I, and probably the rest of the family too, will be doing the Cincinnati NF walk to raise money for the CTF on June 23rd (Children's Tumor Foundation). If you want to walk on Kendall's team, that would be awesome, or if you want to make a donation, that would be great too.

Kendall is a very strong little girl, and I know that as a family, we will get through this and stay strong - but we will take any of your positive thoughts and if you pray, we'd love any prayers for her as well.

I hope to use our blog as a way to keep everyone updated on our family, but also on how Kendall's appointments go.