Katie’s Road to Healing

Kia Ora Whanau,

Our health journey began a couple of months after the birth of our son Nehemiah (Niam) in January 2018.

Shortly after his birth, Katie noticed pain and a small lump in her neck but mostly ignored it and waited for it to resolve on its own. However, the pain continued to get worse and the lump continued to grow. She had a biopsy last August but was told that it was benign and reactive and would resolve on its own. It didn't.

Around Christmas time, Katie started to experience an annoying pain in her calves. This pain quickly turned into an inability to move her toes and ankles as well as general weakness and sensation change from the knees down. She was admitted to hospital in Whangarei for 3 days and misdiagnosed with Guillain-Barre syndrome. She was told that her body should start to recover on its own but it would be a slow process. Once again, it didn't.

During this hospital stay, we found out that Katie wasn't covered under the national health care here in New Zealand and we now have a large medical bill to pay.

We sorted out Katie's visa and had our weekly doctors appointment to check the progress of Katie's legs. Whangārei hospital decided to admit her for a whole week where they ran all sorts of tests and biopsy’s and scans and it was discovered that she did not have Guillain-barre syndrome but instead Castlemans disease and POEMS syndrome. Both extremely rare conditions.

She was then sent down to Auckland City Hospital for an MRI and another biopsy that they couldn't do in Whangarei. It was here that we learned that the tumor at the top of her spine had eroded so much of her vertebrae that she was in serious risk of becoming paralyzed. To prevent this, she had a spinal fusion from the base of her skull down to C5. This operation resulted in a great deal of pain and extremely limited neck movement. But she is healing well and doing a lot better.

We have learned that the tumor at the top of the spine is a type of Plasmacytoma. There are three more tumors. One at mid spine and two lower. However, we are unsure as to whether these are also plasmacytoma or caused by Castlemans. Either way, all 4 will be treated with radiation. She also has an enlarged liver and spleen, extreme exhaustion, weight loss, skin changes, and nausea.

Radiation has begun on the tumor at the top of the spine and planning has begun for the others.

We are fortunate enough to have specialists literally around the world involved in our case. Some of who will be coming to NZ to further formulate plans. The Haematologist told us that nobody is an expert in these conditions but if anyone is, it's them and that's somewhat reassuring.

We applied for her residency in January as well as a work visa. We are hoping and praying that this comes through as she has no health insurance in America where she is from.

It's extremely hard and humbling to put our pride aside and be this vulnerable with you but we know there are people who love us and want to help and that's an amazing feeling. We are asking for your help firstly through prayer. We know that God is the true healer and that He had this journey mapped out for Katie before she was even born. Secondly, we would greatly appreciate financial support. Adam has stopped work to care for Katie and Niam. We are receiving some weekly payments through the benefit but it's less than half of what we were earning. Specifically, at the moment our main costs are Katie's medical bills, fuel costs to travel between Whangarei and Auckland, hospital parking fees, groceries, rent, and expenses. Please don't pay attention to the ridiculously high goal that is set on this page. We don't actually need anywhere near that amount.

We've been absolutely blown away by the love and support that we have received so far. God is so very very good! Even though this is the hardest journey we've been put on so far in our lives, we know there is a purpose and our prayer is that God will be given glory and honor through this and that others will see how much He truly loves His children. Katie has three big diagnoses but one much bigger God!

Thank you all so much 💕