Part 14~ Present Day

I wanted to blog tonight, not about the next part in our chronological story, but in refection of where we have been, emotionally in the past three weeks or so.

This is far and away, the most difficult time of the year for us. We are quickly approaching the 5 year angelversary of the death of our precious little girl. Each August has brought about a tidal wave of emotions, but this one seems to be a tsunami. 

As we prepare for the day coming up in just a few weeks, we are faced with the news of other children becoming ill with PAM. This too, we have been through in previous years. This year, a change in the story has caught us off guard and brought us to our knees..... in prayer and joy and pain.

We are having to really work together as a family to discuss the case of Kali Hardig. She is going to survive PAM. The first person in 50 years to survive. We are overjoyed! With that, though comes overwhelming sadness for our great and terrible loss. We wish so badly that Hailee could have been spared. We know that there is nothing that will change that outcome, but human nature dictates that we are bound to feel mixed emotions right now.

Kali has received an experimental medication called Miltefosine. It was originally created as a treatment for breast cancer, however had showed promise in the lab killing different types of parasites, including Naegleria Fowleri, the parasite responsible for the infection (Primary Amoebic Meningoencephalitis, PAM) that took Hailee's and many others lives.

Another approach taken by Kali's physicians was to cool her core body temperature down to 93 degrees. This approach is used in brain infections as a way to slow things down and help the body to heal. In the case of Naegleria, it also does not hurt as Naegleria is a heat-loving parasite and infects at warmer temperatures, so it would only make sense to lower the body temperature when the infection is acute.

Whatever the combination of efforts by theses physicians, and likely a little miracle.. Kali's physicians expects her to survive. They are uncertain at this point of how much actual damage was done and she will certainly have a long hospitalization and recover... but Praise the Lord, she will survive!

News came to us today of Zachary, who lives in Florida. He is 12 years old and his family reports that he has tested positive for NF. He is pediatric ICU at this time and in fact at this hour is in surgery in an attempt to reduce pressure on his brain. This brought back memories for us today, remembering the drilling that they did to relieve the pressure in Hailee's brain. In our case, the attempt was unsuccessful, as you read in an earlier post.

Zachary has been hospitalized since Wednesday. His doctors are in touch with the physicians that treated Kali, trying to replicate her recovery. Our thoughts and prayers are certainly with both of these families. Many of you have been praying for Kali, and we ask that you continue and include Zachary as well.

There is much work to be done to continue to make others aware of NF and PAM. It feels so uphill at times. We are doing our best to believe that the awareness we and our other dear friends that have lost a loved one to this, has made a difference in the treatment plan for the cases presenting this summer. We have to believe that, or else it all seems too overwhelming.

I will continue on with our blog and complete the story. I just felt I needed to pause tonight to talk about what is happening and ask for abundant prayers for these two children, currently in battle against PAM. I thank you all so very much for the love and support you have shown us, and for continuing to read our story. God Bless!

Heidi