A Mothers Hope: PART TEN - Rebuilding Hope

Posted by Susie Bartlett on

They say patience is a virtue, yet it is definitely not one of my better qualities. I wanted things to happen in my timing but God had prearranged everything to His timing.
Psalm 27:14 Wait for the Lord; be strong, and let your heart take courage; wait for the Lord.
Janelle's first few days being injected with an experimental drug called Alpha Interferon, were nerve wracking to say the least. 'Peace ' is such a weird emotion, it can be with you one minute, bathing you in warmth and positive thoughts and then can be snatched away the next minute, leaving behind doubt and a terrible hollow feeling. Those feelings actually stayed with me for many years as not only were there immediate dangers with using this drug, but the long term effects were also not known. Janelle was only the sixth child in the world to try it and a very rare case with her hemangiomas. It wasn't like I could talk to twenty other parents and compare notes. I did however somehow get in contact with a mother of a boy called Daniel, they lived in Sydney. He had spent the first five years of his life on what she called 'the wall'. Basically this was in ICU hooked up to equipment that kept him alive. He had massive hemangiomas that were threatening his vital organs in his abdomen. Daniels mother wrote a book entitled 'Daniel' and she would encourage me occasionally on the phone during our dark days at the hospital. A few years later I was saddened to find out that the hemangioma in Daniels abdominal area eventually took his life. He was 14 and fell over at a birthday party, somehow this triggered the birthmarks to grow again and from memory might have crushed his lungs. I asked our doctors if this could happen to Janelle also and they said that there are lots of different types of birthmarks and hopefully we didn't have the same type.

However that fear hovered over me and for a long time I felt like I had only been blessed with Janelle for a certain amount of years and she would pass away during her childhood. It was an unwarranted fear but sometimes it was hard to shake, I suppose going through what we did had to leave a person with some aftermath. In that first week, after making sure that Janelle was having no adverse effects, I had to learn how to inject her before we could go home. A nurse turned up at the ward one morning with an orange, she had multiple spare needles and we sat down to a lesson in inter-muscular administration of a drug. First I had to learn to draw the needle up with water and tap the needle to expel air bubbles. Then at the right angle, I had to insert the needle into the orange, drawback the syringe to make sure I wasn't in a pretend vein and then slowly squirt the water into the orange. I had to practice lots that day because the following morning I would have to inject Janelle. To this day I am quite competent with injecting into the muscle and I can even do it intravenously and I sometimes need to apply this to horses. However I really don't like it because of the memories that are attached.
I can't remember the first time I injected Janelle, but I do recall it the drug had to be kept cold and administered at the same time everyday. Sometimes this meant that I had to take it with me in an Esky. Once of my most vivid memories was injecting her each week at Pastor Jocie's house during women's bible study. We would lay her on the kitchen bench and Jocie would hold her leg still. The top of the thigh was the best place to inject as they were chubby. Janelle was now over six months and quite aware of the routine that happened daily, she would often cry knowing what was about to take place. For a month or two they increased the Alpha Interferon to twice a day to really attack the growth. I suppose even now some of those women at that bible study would remember helping with Janelle. Although I often felt alone in that hospital, I knew I wasn't. There was our family, friends, church and community all praying for our little baby to get better. Now it was just a matter of time......waiting to see.

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