23rd August 2011

EXCITING NEWS:

Sam and Grant were engaged on Sunday 14th August.

HEALTH UPDATE:

INFUSIONS/LIVER: Sam had a huge day at St Vincents last Thursday 18th August. It was exciting to show off Sam's ring and to have some of the nurses who have watched the last two years unfold since the transplant, fuss over her. Its been such a long road and we are so grateful that our dear haemotologist said that Sam's liver was stable enough for her to stop having the infusions of intagam for a while. This comes as a huge relief to all of us. Infusion days are long and horrible.

EYES: Today, after trying on wedding dresses and veils in Paddington we went to see the opthamologist again. Sam has acute ocular GVHD and her eyes are constantly sore and irritated. The professor says it will be trial and error while we work out how best to ease the symptoms for Sam. To begin with we need to double her prednisone again and some other drops in her eyes. The next step is to go to the special blood bank in Alexandria where Sam needs to donate her own blood and have the plasma extracted from it. This goes to Melbourne to be made up into plasma eye drops a way of treating the GVHD. In 80% of cases, the professor says this is successful for easing the pain.

TOES: Sam's toes continue to give her grief and she manages the pain with panadol and regularly cleanses her ingrown nails with betadine, manuka honey and ointments. We hope to see the oncologist soon to get hin to check them.

NEXT MONTH: Sam has appointments with the endochrinologist, the haemotologist, the lung specialist, the opthamologist and the gynochologist. Thankyou for your continued prayers as Sam's body heals. We are so grateful for how far she has come.

I still write on http://girlonaswing.wordpress.com if you like to join me there :)

6th July 2011

Thanks for checking in!

Today was our first visit back to hospital in six weeks. This is a first in two and a half years.

TOES

We started the day with the oncology surgeon to check on the Sam's ingrown toenail status. A strange nail had spurted a small growth (like a seedling I guess) and had to be removed in his rooms. Sam braved two nasty needles in her big toe as I endured the squeezing of my hand.

The doctor then sliced the side of Sam's toe and dug out the nail, wrapped it in lots of bandages and said he'd check it again in two weeks. By the time we got to HOAC her poor toe was aching as the local anaesthetic wore off and panadeine forte was subscribed.

BLOOD TESTS

Sam did these in the clinic today which meant extra needles on top of the toe needles and the canula but the clinic nurse is lovely and Sam weighed it up as a better option. She did this by herself as I minded our spot in the queue for the doctor. We have come a very long way in the last few years. I remember when Sam could not possibly have blood taken without me there. Now blood tests are like brushing your teeth - you just have to do it!

HOAC

Sam's lovely nurse Jo took one look at the blood drenched bandages and bumped her to the front of the line, giving Sam a bed for the day in a private room - sheer bliss! We love Jo, so we were happy from the outset. Our doctor arrived and went through our long list of concerns...not so long as it used to be!

I had been very concerned about a massive egg-like lump in Sam's leg that she didn't recall hitting but our amazing haemotologist put my mind at rest saying that her bloods were good therefore he wasn't concerned.

LIVER

Still improving 'on it's own' without drugs (thankyou Jesus)

DRUGS

Reducing cyclosporin from 50MG twice a day to 40MG twice a day and if this goes well he will continue to reduce by 10MG every month until she is completely weaned. This is the main immunosuppressant so this is really worth celebrating. Please pray that there is no problems or reactions in her body to this reduction.

INTEGAM

Sam had this infused over three hours to help her body fight off infection. Dr John said she might be able to finish having these at the end of winter - hooray!

EYES

Sam's eyes have really flared up in the last 6 weeks. It is painful for her to be in the sun, be around flash photography and any sudden bright light. So we have made an appointment to see the head of opthamology at St Vincents to investigate the effects of the transplant and the GVHD - again - thanks for praying for a miracle.

EARS

We see the ear specialist in two weeks - I'll update you then.

IN OTHER NEWS:

I caught up with my dear friend Sarah whose dear fiance died when he was unsuccessful in finding a donor match. We spent two days crying together and sharing our stories, filling in the missing gaps since our days at RNSH. Please pray for Sarah, she is only 25. She was 23 when Andrew died and she is trying so hard to get on with her life.

I am very passionate to educate, inform, advocate, whatever to get more people on the Australian Bone Marrow Donor Registry http://www.abmdr.org.au

We particularly need young men between ages 18 and 35. Men are better donors because they don't carry rubella and they can give higher quantity and quality blood. Women are still encouraged to donate and if you are giving birth enquire about donating cord blood. Cord blood is great for children with Leukaemia.

People of ethnic race also have very slim chance of finding donors. This is a tragedy. I have watched far too many people die simply because a donor was never found. Please tell every young man you know to go on the registry. All that is involved initially is a small vial of blood. Then if a match is found, only 1% of people match someone else (so I heard), then a course of GCSF and a four hour blood donation is required. The after effect for the donor is compared to getting the flu (but not everyone has a reaction) and the after effect for the Leukaemia patient is life.

I am looking forward to the day when Sam and I can fly to America to hug the man that saved her life.

Please give if you are young enough or donate blood at the Red Cross.

You can read about our rush to emergency this Sunday to get a ring off Sam's hand if you still feel like reading. http://www.girlonaswing.wordpress.com

Thankyou for your love and prayers xxx

27th May, 2011

Faithful Praying Friends,

It is exciting to be updating here monthly now and to report "Good News" on two fronts.

Both Sam's liver and her right ear are stable and she doesn't need to continue with the liver drug! Hooray!

EARS

The ear specialist was very surprised by the absence of scar tissue in her right ear and both recent visits confirmed it has gone (the scar tissue that is).

Both ears still have the wet environment typical of "myringitos," she still has to puff powder into them morning and night and her left ear is inflamed and red but not as bad as her right ear was.

She is on antibiotics for her left ear.

LIVER

This is stable. Sam enthusiastically 'tweeted' that it is normal and I am certain that very soon it will be. Things most definitely are improving on so many fronts.

In absence of the awful side effects from the liver drug Sam's appetite is improving and she put on 1k since the last visit. Slow steps forward!

GVHD

This is present in her eyes, mouth, ears and skin but it is mild. Sam will always need to take extra care of her skin, avoiding exposure to sunlight (especially while she is on her drugs) due to the intense doses of methotrexate chemotherapy but she is very sensible and careful to protect herself. She has new antibiotic drops for her eyes and mouth to ease the discomfort.

NO SICKNESS

Sam passed her first teaching practicum with glowing reports (all that time in my classroom observing!!!). Actually I think she will be an exceptional teacher because she has skills that I do not have but its good to think I have been an inspiration!

The best thing about surviving prac though is that in a season of whooping coughs and a teacher/advisor who was fighting off the flu throughout Sam was not sick once and has not been since her transplant - no coughs, sniffles, colds or flu. We are so thankful.

LATEST HOSPITAL VISIT

Wednesday was a long day of appointments and waiting and painful needles. Sam has finished her first 3 rounds of immunisation (12 needles in total) and has no more immunisation appointments until March 2012.

We saw the ear specialist (see above) the oncologist (who cares for her toes) and the haemotologist and then sat waiting for 3 hours to be hooked up for blood tests and infusions.

We are getting very good at making this an adventure, spoiling ourselves to yummy lunch and lots of junk food from the hospital kiosk.

We look forward to the day when it is over completely but catching up with the nurse from 9 South who has just moved from the ward (where Sam had the transplant) to the day patients centre, we remembered precious friends who didn't make it this far, we are tremendously grateful for life!

Please keep Sam in your prayers.

Much love and appreciation

Clare

Update 27th April

Thankyou for checking in and being willing to pray for Sam

Last week we had terrible news concerning Sam's hearing.

You may remember that there has been an on-going infection in both ears since the transplant (September 3, 2009).

The infection is on-going because in her immune suppressed state she does not respond to anti-biotics and their is multi resistant staf infection in her body.

Bone Marrow Transplants (BMT) are very complicated. I know to look at Sam and to hear her talk it is easy to think all is well - she is better.

People ask 'is she in remission' etc...but what no one really understands is that though the return of cancer is a heightened risk for a BMT patient (as opposed to you - I hope, and I who have never faced cancer) the real battle we face every day is GVHD.

GVHD is graft versus host disease where all the organs in the body fight the donor cells or viseversa - clearly I am not a nurse. (It's complicated) Many BMT patients die of GVHD. In fact in the last 30 years (that is how long BMT have been conducted in Australia) only 55% of BMT patients have survived.

Sam's life is sustained daily by a combination of extremely hard hitting drugs that seek to balance the effects of GVHD. It is a complicated science that even I don't understand (though I have read so much).

Anyway back to the ears. As a child Sam had on-going ear problems. She also had regular problems with in-grown toenails (a ballet dancer thing). It seems these two weak areas in her body have become the target for the GVHD.

The condition in her ear is called 'myringitus' and it means there is a constant wet environment of infection. She uses a compounded powder to try to keep the ear dry but in her right ear there is scar tissue beginning to grow. It has grown so much that it now nearly covers her ear drum completely. If this increases (which it is) Sam will not be able to hear from that ear.

We have many, many appointments and I am continually taking her to Darlinghurst because she is very tired and unable to manage these alone. I have left full-time work to give me the flexibility to take her during the day because the afternoon appointments (Getting to Darlinghurst at 4.30) have worn me out as well.

Last week the blood test showed that her liver results have gone up again as well and her liver drugs have been increased.

We know that God is faithful. He sustains us everyday and we are grateful for so much however we are in need of a miracle. And I would be most grateful if you would pray specifically for her ears at this time.

Thank you for believing with is.

Reid and Clare xxx

Update 3rd April 2011

On the 23rd of March Sam celebrated her 23rd Birthday with a day of tests at St Vincents Hospital. Unfortunately this was the only day that I could manage to pull together all the appointments on one day, rather than taking more time off work to see the multitude of professionals who now take care of her health. Even with my clever planning we didn't cover all her appointments and my goal to pop down to Bill's Darlinghurst for her favourite "corn fritters with avocado and crispy bacon" failed when one of the specialists ran two hours late! Such is life in the hospital system. We were grateful for our 10 am coffee at The Bunker and the lovely staff who quickly put "Happy Birthday to You" on the sound system.

We left home at 7.30am to get to Thoracic Surgery for 8.45am where she was subject to an hour of breathing tests in the small cubicle that would examine her lung capacity. Scans from our two days in Emergency a few weeks previously had shown abnormalities within her lungs and the wonderful surgeon was anxious to see the effects this was actually having on her breathing performance and the possible long term effects. In addition to this Sam endured a needle in her ear lobe to draw enough blood to test her oxygen levels (apparantly the ear lobe is the best place for this). I felt awful and wished that I had just taken the whole week of work rather than put her through this on her Birthday but as always she was brave and took it all in her stride.

After these tests we waited for the professor and he was thorough in his examination of the results, the scans and did a physical examination to examine the strength in Sam's legs and body. Intriquing! He took his time to explain Sam's condition to the young medical student who was with him from the USA and Sam graciously went through her whole medical history to explain the ordeals of her Leukaemia and subsequent health issues. At the end of the very long appointment, he reassured Sam that she should get on with her life, accept the set backs and not to ever try scuba diving, nor take up the saxophone nor jump out of a plane. 'In spite of the abnormalities, she should be fine,' he said. 'Stick with pilates, walking and gentle exercise.' Then he reminded her that she was getting stronger and though life was not what it once was, it certainly wasn't over. (Easy for him to say, I thought but in reality it is true). She has come so far!

We then went to visit Sam's oncologist who has been taking care of her toes. Again this was a long appointment and Sam decided that the appointments with this doctor were always long because 'we are young and fun to talk to,' compared to the very old people we see in his waiting room. I guess this is a good thing? Her toes are slowly improving and he didn't charge us - so that was a highlight!

From there we waited and waited and waited getting hungrier and hungrier as the desire for corn cakes became impossible. It's been six months since we saw the endocrinologist and though she is pleased with how Sam is tracking I always leave with a gnawing sense of all that is lost. The endocronologist focussed on Sam's need to put on weight and tried to provide suggestions on how to get past the 43KG mark and also made changes to her medications. In six months, Sam must have bone scans again to monitor the effects of oesteoporosis. There is also far too much iron in her blood, a result of too many blood transfusions 'but we'll deal with that later,' she said.

Our day at the hospital was over and we stopped for hot chips with chicken salt at 430pm.

Last week Sam had 5 more of her immunisation needles at the local surgery. Emma took her for these, so that Sam had hands to hold. The nurse is a little concerned that Sam is about to start her Primary School Practicum for Uni on a Kindergarten class in case her whooping cough needle has not yet taken effect. Sam is SO excited to be teaching Kindergarten, so I am just going to pray that she doesn't get sick. Can you pray too?

Next Monday, the first day of the school holidays, we head back to St Vincents for a full day of infusions and appointments with the haemotologist. Then return again to see the ENT - her ears are not good and neither is the GVHD in her eyes. Today we discussed the possibility of buying expensive mascara to see if it helps with the stinging. Suggestions anyone?

Please pray that we can reduce more drugs, that her liver will have improved, that her immuloglobins are increasing by themselves and that the GVHD goes away.

I have taken so long to write this update. Somehow life caught up with me! I have resigned from work and am planning to finish university, teach casually, fatten up my daughter, reacquaint myself with Emma and Jack!

Can I brag?

I have also been accepted into a 'masters writing class.' I am so excited by this!! My writing was accepted as worthy of note! It started yesterday and I am completely out of my league amongst published writers and journalists. Yet somehow I felt so incredibly at home and in my groove. How is this possible?

Of course tonight is the perfect time to write this post, I am such a procrastinator. I have two assignments due for uni on Wednesday. One of which I haven't begun. I will get there - queen of the all nighter!

Thankyou for keeping us in your prayers. You can read my latest blog post on www.girlonaswing.wordpress.com

28th February 2011

Haemotology

Last Monday Sam had her 3 hour infusion for immuloglobins at HOAC, an appointment with her haemotologist and a visit from the oncology surgeon who has been taking care of her ingrown toenails.

The good news was that her liver tests have improved enough for us to reduce her cellcept drug completely. The results of discontinuing this drug will be monitored next time she has blood tests.

Ingrown Toe Nails

The bad news was that her toe was more infected and gnarly so we scheduled day surgery for Thursday last week.

On Friday we returned for a 4.30pm appointment for the surgeon to examine his handiwork and check on her toe. It has began to heal though it does still contain MRSA in the swabs.

Ear Infection

Yesterday Sam began to suffer dizziness and discomfort in her left ear. She slept most of the afternoon and I had a prescription filled that I had on file from a previous appointment. We will keep an eye on her and see if things improve or whether I need to bring forward our appointment with the ENT.

Lungs

Today, after her half day of work she came home and began vomiting. She feels very unwell. The lung professor said we should contact him if she vomits at all after our intense few days in emergency two weeks ago. So I will be calling him tomorrow and seeking advice.

Please pray for us that this is just a random, unassociated little hiccup.

My latest post is here - "Listen"

Thankyou for continuing to pray. Clare xxx

16th February 2011

Lung Professor

The lung professor stayed back at work today so that I didn't need to take time off work to take Sam to see him. He examined Sam again and spent some time going through the CT scan results (fascinating cross sections and zoom control on the computer) and answering a multitude of questions that I had after having a few days to ponder the goings on of last week and our two trips to emergency.

There were so many doctors and so many things being said last Friday that I needed to have things clarified. The holes that were evident in the scans turn out to be bubbles in the bronchovascular bundles and show that Sam is experiencing mediastinal emphysema, not holes in the oesophagus. The professor confirmed that all the specialists were most concerned about it being the oesophagus and he understood why I left looking so confused. He assured me also that our haemotologist was equally (probably not equally, I teach Kindy - and not really good at scinece but encouraged all the same) confused.

So what exactly is mediastinal emphysemia of the bronchocascular bundle? I am not exactly sure and I've been on this road long enough to know that 'googling' only makes me anxious (though it was helpful in decoding my phonetic spelling), so I ask that you continue to pray. We are going back in a couple of weeks (I'll keep you posted - the office staff had gone home by the time the professor had finished with us) for more concentrated lung scans. He also reiterated that we have his mobile number and can call it any time we like and 'so long as he isn't on an airplane or out of range on his farm' he promises to answer the call.

Is this man an angel? Not sure but confident that we are in good hands.

If you haven't read my blog it's up on http://girlonaswing.wordpress.com and if you are wondering I really do not feel resilient at all, just trying to put one foot in front of the other right now. Love to you x