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Wednesday, August 26, 2009 - 2:30pm

We heard back from Hailey's endocrinologist with her lab results. The hormone levels related to precocious puberty weren't elevated enough for her to be considered in full-blown puberty. Her growth hormone was also elevated and her bone age measures at 6 years. There isn't a clear cut treatment option for her at this point. Elevated growth hormone is very rare, especially in children and the drug therapies available are not very advanced. There are only 3-4 cases per million per year diagnosed with this condition.  

The plan for now is to monitor her closely. He wants to see how quickly her symptons are advancing. We will see her endocrinologist again December 22nd. If her height continues to increase at an accelerated rate and/or her puberty symptoms progress, lab work will be repeated. Her next MRI will be scheduled soon after that appointment so all of the labs can be done while she is sedated for the MRI.

We are just starting to research this condition. If you want to learn more, here's one artilce I found:

 http://emedicine.medscape.com/article/925446-overview

For now, we can enjoy the rest of the summer and get ready for the school year to start. We still can't believe Faith is starting Kindergarten! Where does the time go...

 

Thursday, August 20, 2009 - 5:15pm

We had another 3 month MRI this morning and a round of blood tests yesterday in Madison.  Good news and bad news.  The good news first.  There has been no growth in Hailey's tumor since the last MRI!  We have dodged a bullet for another round.  We're relieved.  Next MRI is in another 3 months.

The bad news is it appears Hailey is experiencing early puberty.  This can be a side effect of her tumor because of the location.  If you didn't know what to look for, you wouldn't notice anything different with her at this point, but it is something we've been aware of and watching for all along and the signs have reared their ugly head. 

We met with an endocrinologist at UW yesterday to go through the tests necessary to determine exactly what is happening with her.  They ordered a whole array of bloodwork while she was out for her MRI today.  From that bloodwork, they will be able to determine if she in fact has early puberty (which is almost a certainty at this point) and they are also looking for whether she has an elevated level of growth hormone.  The whole hormone and endocrine system is a very complicated subject so I won't even try to explain this in any detail, but the bottom line is the early puberty is very treatable.  There is a very effective, and from what we've been told, harmless, drug available that will stop the puberty until she is at an appropriate age to allow it to continue (probably 10 years old).  It would require a shot every 3 months and some regular bloodwork that could ideally be coordinated with each MRI so she wouldn't have to get poked while awake.  This is the easy one.  Unfortunately, the second thing they are looking for and Hailey has signs of (the elevated level of growth hormone) is not as easily treatable and is a more difficult subject.  The drugs in that area are not as far along as they are for early puberty.  The endocrinologist did not want to even go too far down that road at this time until we have the results of the blood tests and know exactly what is happening.  We of course did some reading last night on effects and treatments of elevated growth hormone.  We wish we hadn't.  It will be a few days before we know the results in general and will update more at that time.

For now at least, we are going to try to focus on the positive that the MRI showed no growth this round, and the pre-puberty (called Precosious Puberty) is very treatable with no apparent side effects.

We'll update again when we know more.  Thanks for all your continued prayers and support!

Friday, June 5, 2009 - 8:26pm

Tomorrow (June 6th) is the 2 year anniversary of Hailey's diagnosis.  The last two years could definitely have been worse.  Thanks for all the love and support we have received and continue to receive from friends, family, neighbors, acquaintances, and complete strangers for that matter.  We'd be in rough shape if it wasn't for all of you pushing us through.

Thursday, May 21, 2009 - 6:28pm

They're calling it stable this round.  No significant growth.  Next MRI is in 3 months.

Also, Faith graduated from Pre-School tonight.  It was a very cute "ceremony."  Our baby girl goes to kindergarten in the Fall!!!  Yikes.