BLOG 22

20 November 2009

A new blog is well due for you all to read, as a lot has been happening. The following verse reminds me of my final goal: Paul & Barnabas on their discipleship journey.

Acts 14:22 - Strengthening the disciples and encouraging them to remain true to the faith. 'We must go through many hardships to enter the kingdom of God', they said.

Some of us do/some of us don't or is suffering just a part of the narrow road that leads us there?It's not something many people like to dwell on or even mention....but suffering is all around us, in one form or another. I see this suffering as a metaphor for an example of the gold refining process. I see us as a block of gold, specks of gold, nuggets, buried for a lifetime. Suddenly discovered, to be refined to its purest form, its Destino (Destiny) means it must go through a process of smeltering, heating, skimming and reforming. Only until it has been melted can it be reformed into a beautiful piece to be loved and treasured. As I go through pain and difficulties, I believe that although illness is certainly not from God, there seems to be a purpose and a use for it. Only when we reach the next kingdom, will we fully understand this challenging time and the reason for what we cannot explain. On the medical side of things: currently, I am being looked after by 3 hospital departments.

They are Heamotology (HEAM), Ear/Nose/Throat (ENT) and Speech Pathology (SPEECH). Infectious diseases has now discharged me. Since mid August, I have had difficulties with the swallowing process (a condition called Dysphasia). We are not sure of the cause, but are currently investigating. This week, I have had 2 CT scans: one of the neck area, to rule out Lymphoma activity and also a full body CT to look again at the lesion/scar tissue remaining on the S1 (Sciatic Nerve). I recieved these results today and there is no suspect lumps, bumps or extra lesions.I also had a Barium swallowing x-ray this week to watch me swallowing and today as I write this, I am getting my monthly dosage of Plasma and then will see my specialist. Next week through ENT, I will have a sinus procedure. Four big appointments in 1-2 weeks.It is likely, we may not find a cause for the swallowing problem. It may be somehow all linked with the sinus problems. Here's hoping it can be fixed or helped. It causes me a lot of discomfort and more pain, along with pain in the S1, weakness in the R leg and fatigue from the disease & past chemo. Unfortunately, my Neutrofils were really low again today and this has been a consistent problem, post recovery -- compared to other Heamotology paitients (who have had up to 8 doses of Fludarabine/strong systemic chemo) -- my system and blood counts should have well recovered by now (it has been over 6 months since my last dose and I only had 3 lots)....this means more investigations are needed and I will be having another Bone Marrow Aspirate soon to rule out disease in the marrow. Always a painful procedure.

I believe now it is important to talk about these things. Although some may think that talking about it is negative or gives it 'power over you' - I believe you can't face your foes until you know who they are/what they are. Nor can those around you specifically pray for your needs, if they don't know what to pray for. I try to keep life at home organised, in amongst medical appointments for both Julia & myself, two children's schools (Anna's Lutheran school& Julia's special school), caring for the family, home makeover improvements here and there, there is not much time left, in one's day. Some days, I have more energy than others and then some days are slightly lousy, where I can't do much at all. I rest and do my best. God takes care of it all.On the kid's front: Julia has had some dental problems with her upper teeth for about 5 months. They are squished together and we can't brush between them properly, she generally won't let us in her mouth (i.e: tooth floss). This is the first time, we have had to get her formal dental treatment or dental work. With most autistic children, the feeling of having someone scrape at your teeth is absolutely horrifying....their senses are so, so heightened. I tried to take her to a 'regular' dentist with kiddies DVD's playing, etc and when he tried to put a needle in, she almost killed him. Imagine 'Rainman' going through dental treatment and you'll get the picture.

Autistic children are almost always strong and will push a grown man easily. So, off to the school dental clinic we went and on a waiting list for her to have dental work done under a GA (General Anaesthetic) at the Royal Children'sHospital. It will be a day surgery for her and will be mid January. Should be interesting. Recently, I spoke with a key federal politician about ways that we can drive a programme/assistance package to help women (and men) going through severe/life-threatening illness, whilst looking after children. This is a gap in current Australian community services. Many women (doing chemo or coping with severe illness) find caring for the family extremely difficult, whilst they require care and assistance themselves. I am now writing a submission to start gathering ideas for this type of programme. Any suggestions or comments from my readers/supporters, would be greatly appreciated. We hope to take the girls away for Christmas....but did not realise that you must book in super early for pet resorts, for Bobby & Peggy. They are completely full....we are on one waiting list. Anyone who would like to assist with this, let us know.

Blessings to you all,

Jodie & Family.