It’s been a tough few weeks. Things are moving slowly and the process of formalising a treatment plan has been incredibly challenging. Every step feels like another layer of complexity but we’re pushing forward and doing everything we can to get Sadie and Jesse where they need to be.
The kids had their third round of immunoglobulin treatment yesterday, which helps maintain their weak immune systems while we continue to research and investigate the transplant path. It’s laborious and difficult process. Clayton and Lee-Ann have now been shown how to administer the infusions themselves, which they’ll need to do twice a week at home. The first attempt with Sadie was very traumatising. The needle caught a small vein and they had to start again. She cried a lot. Jesse was incredibly brave and tried comforting her, holding her hand, but he struggled too, showing side effects of nausea, trembling, and feeling generally unwell. It’s painstakingly difficult to watch let alone administer the needles into their little bodies.
We’re still trying to find the balance between keeping them safe (contained) and giving them some sense of normal life. They’re not in a “bubble boy” situation, but their exposure to the outside world is still extremely limited to avoid potentially risk. We try to find joy in the small ordinary things that are still possible. Jessie starting to ask the very difficult questions related Why – cant I go to school, see friends, wee-jump etc.
We continue our efforts in trying to connect with the identified researched Hospitals and Facilities where this procedure has been exercised with high percentile results however, it’s a complex process of getting to the right department, the correct individual to talk to. We are making some progress but no clear path as yet.
On Thursday last week, we had the privilege of meeting with Professor André van Niekerk, who brings an incredible depth of experience in primary immunodeficiencies, yet another round of checks and balances on the children, sharing his experiences with similar transplant and his recommendations – “this condition needs to be addressed with urgency”. His insight was very valuable to us right now because he understands the broader context of transplants and the associated risks in this very uncertain time.
This is a long, difficult road. But we’re remaining hopeful and positive every day.
Thanks to everyone, you make all the difference and we are forever grateful.
With love,
The Krause Family
