Help while Kathleen goes through Chemotherapy

Hello everyone. Thankyou for being here ❤️

Any money raised will go towards our mortgage repayments and food, and (worst case scenario) flights and accommodation in Brisbane for the duration of a bone marrow transplant. During this time of treatment not only have I not been able to go back to work after my maternity leave, but Jacob hasn’t been able to work while I’ve been in and out of hospital as he is a FIFO worker.

The story starts in October last year, when I picked up my 6 month old daughter and realised my arms felt incredibly weak. The next two days I asked Jacob to carry her because I was so scared I’d drop her, the weakness turned into pain and I could barely move my arms. My resting heart rate was around 130. I also had bad reflux and chest tightness, as well as numbness in my face. These are all telltale signs of heart attacks in women.

We drove to emergency at 2 in the morning, Jacob and Meira slept on the ground next to my bed. I was still exclusively breastfeeding so I fed her while in my hospital bed. I was sent home the next day, they were completely full and they couldn’t figure out what the problem was, being only 25 they assumed it couldn’t be a heart attack.

I got worse through the week, lots of tears and difficulties breathing. My gp gave me antibiotics for my temp and heart rate assuming it was an infection. I couldn’t understand why I was in so much pain when it wasn’t anything serious (emergency departments words).

Exactly a week after we left emergency I had to go back. My heart rate was reaching 170 while I showered, and I couldn’t get out of the hot water because it was the only thing helping the pain in my chest, arms and now throat and mouth. I was losing time and my vision was blurry. They asked me what was wrong at the emergency desk and I had no idea. I could barely talk.

Waiting for test results and having a specialist walk in to have a chat is quite terrifying. He very kindly explained that my blood results showed my white cells were raised higher than he’d ever seen, and the type called Eosinophils and amount indicated a response to cancer. It was causing my blood to thicken and the cells to attack my body.

I had a bone marrow biopsy done within a few hours still in the emergency department. Then they told me I was going to be there for a while and to make arrangements for someone to be home with my baby. I’d never been away from her more than 2 hours before.

The next few days I was given a very aggressive dose of chemotherapy to try drop my cell count but it was still going up. Day 3 I couldn’t breathe properly without high doses of painkillers and sedatives. I was rushed to icu to have a CVL inserted to try filter the Eosinophils out of my blood. This was to buy time for the chemotherapy to start helping.

In this time I also had an MRI to see what was causing my arms to ache and tingle and generally not function and it was found that I had had minor strokes due to my blood being so thick and my brain had been too deprived of oxygen.

A coronary angiogram was done due to my chest pain and they found that I’d also had a heart attack.

I also had sharp pains in my arm and legs which turned out to be superficial blood clots.

I was also needing platelets and blood transfusions as the aggressive chemo was destroying everything in its path, as well as shrinking my veins. The blood tests twice a day was causing my veins to collapse and my arms were completely covered in bruises. Canula’s took minimum 3 attempts to get in, and one time it took 5 hours with 6 different nurses trying before it worked.

It was incredibly hard being away from home, and even with visits I couldn’t hold Meira most times, I was either in too much pain or had too many tubes sticking out of me. Try explaining to a 6 month old that if she pulls that fun looking tube, mumma’s artery will collapse and she could bleed out..

After about 2-3 weeks my results from my bone marrow biopsy showed no sign of any cancer cells but they performed another one to be sure, as the eosinophils might have hidden them. At this point though they diagnosed me with Hypereosinophilic syndrome rather than blood cancer. We were momentarily relieved. However there’s no cure, so treatment will be ongoing.. possibly for the rest of my life.

I was let out of hospital exactly a month after being admitted, but needed to get blood tests still every second day. For a week it was amazing and I felt so well! But my chemo dose wore off and I was back in hospital again. It was very very hard to bring myself to go back not know how long I’d be there. It was also devastating to find out that I was only well due to chemo, and the milder treatment they planned for ongoing treatment had failed. I’ve been in again 3 times since then for smaller stays when the levels have raised again and I’ve needed to get more strong chemo doses, and to try get my medications right, all totalling up to two months in over a 3 month period.

Right now, it looks like they’ve found a correct dosage of chemotherapy and a weekly injection of interferon to keep my levels normal. The treatment is very new and experimental so I am still regularly checked. If this does fail again though the next treatment phase is a bone marrow transplant at the Royal Brisbane hospital, and we’d have to live there for 6 months minimum during treatment.

I’m so so grateful to all our family and friends who’ve helped us during this time. It’s not something anyone is ever expecting to happen, and our rainy day back up savings didn’t quite take this into account. We were already down on our money as I was home with Meira, and Jacob was working less to help me and not miss her newborn days. I was looking into going back to work to help make ends meet when this happened.

Its very hard to ask for help when I currently feel ok, but with my immune system compromised and my condition ongoing I can’t go back to work just yet and Jacob is still trying to find jobs that will pay enough to be worth losing his carer payment for Meira. It’s also hard for him to leave us after everything we’ve all been through recently.

Thankyou for reading ❤️