There is always a battle between believing for a miracle and having fear that you are setting yourself up for disappointment..... the Alpha Interferon was one or the other, there was no in-between.
Hebrews 11:1 Now faith is the substance of things hoped for, the evidence of things not seen.
Life was now a sequence of routines because that is how a hospital functions. Wake up at a set time, breakfast, doctors rounds, bath Janelle, go for a walk, lunch, read a magazine, have a cup of tea, do some knitting, maybe another walk, doctors rounds again, dinner and then settle in for the night. Janelle being life threatened, rarely got to go home and I didn't get to see the other children much. Occasionally I would have them with me for a few days and stay across the road at Ronald McDonald House at night but keeping them amused in the confines of a hospital ward and looking after a sick baby was very difficult, so it didn't happen much.
With the hope of this experimental drug on the way, I had come to a peace about Janelle's life and my newly found relationship with God. I clearly remember praying to Him and saying that no matter if Janelle lived or died, I would be grateful for the time I had with her and would not blame Him for taking her from me. I believe sometimes to find peace you have to let go. This was not defeat by any means, but an acceptance that dissolved the constant fear that plagued me. Those fears were not only about her passing away but also about what she would look like if she lived. People can be so cruel to those that look different, how disfigured would she be in her teenage years? Plastic surgeons would occasionally visit us on the ward and I recall a specialist one day telling me that Janelle would probably need quite significant plastic surgery. This would involve cutting her around the hairline from one ear to the other. They would then peel down her face to be able to make the corrections. Being told that gave me hope and reassurance that they could help her appearance in the future but the procedure terrified me at the same time.
Doctors were also very concerned about Janelle's eyesight. Her right eye was now protruding about three centimetres from her face (photo of XRAY shows distance the eye was) and the optic nerve was overstretched the same distance. They weren't even sure how much sight she had left in that eye.
Babies under the age of six months learn to use both eyes in unison, but with the Hemangioma altering her eye function, doctors weren't sure if this was happening. So at least once a day, I had to patch Janelle's good eye so as to make her use her bad eye and strengthen it. This also involved putting her arms in tiny splints that fastened with velcro. This was because Janelle quickly learnt to reach up and pull her patch off, so the splints stopped that because she couldn't bend her elbows. Although this whole routine in time showed us that there probably wasn't much sight there, due to the fact that Janelle would quickly fall asleep.... after all, she was bored not seeing anything.
To this day Janelle is legally blind in her right eye and it was a blessing that her brain never learnt to use both eyes in unison and therefore it was programmed to ignore what her right eye is seeing. I am also grateful that Janelle was too young to remember anything they did to her as a lot of it would have been painful.
Janelle's breathing was getting more laboured and there was a risk that she was not getting enough oxygen to the brain. This would cause brain cells to die and leave her disabled. They needed to know if she needed to be on oxygen full time or have a tracheotomy. To test this they decided to stick a tiny camera up her nose and partly down her throat. It took several attempts to get it in and Janelle screamed as it would have been painful. I hated agreeing to put her through procedures that caused her pain, she had enough to deal with and didn't need more. I can't recall how long the Alpha Interferon took to get to Australia, but finally it arrived. A day or so was taken to prepare a plan to administer it, then we were ready to roll! The first time they injected her with it was totally new territory for the doctors. A nurse sat by Janelle's cot to monitor any reactions..... this moment truly could have swung either way.....joy or devastation!
READ PART 10 HERE