Sam Froggatt

23rd August 2011

2011-08-23T18:42:00.002+10:00

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

2011-07-06T17:53:00.002+10:00

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

2011-05-27T16:25:00.002+10:00

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

2011-04-27T16:46:00.002+10:00

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

2011-04-03T17:36:00.002+10:00

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

2011-02-28T20:04:00.002+11:00

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

2011-02-16T20:15:00.002+11:00

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

Tuesday 15th February

2011-02-15T21:44:00.002+11:00

Ingrown Toenails

Sam saw the oncology surgeon today who usually removes cancerous tumours but due to Sam being immune suppressed she is treated by this amazing doctor who understands the risks we face. He is the same surgeon who removed her ingrown nails last April and who treated her in his surgery in November. He said, "I can't say I am happy to see you when we arrived." Like us he wants this to be over. He was lovely with Sam and decided to try and deal with this infection in his surgery today.

She had to have a horrible needle in the thin piece of skin that joins the big and second toe and was incredible brave (as always) as he removed what infection and swelling her could from around the nail bed. Now we need to 'wait and see.' He will visit Sam when she is in HOAC (Haemotology and Oncology Clinic) next Monday when SAm is there for her 3 hour infusion of immunogloblins.

Oesophagus

The lung specialist phoned me yesterday (in person - I find it amazing how the doctor's at the top of their field make time to ring themselves rather than giving the job to their secretary). He wants to see Sam tomorrow at 4, so again we battle city traffic but grateful that we have the very best doctors looking after our girl.

We appreciate you praying and returning to this blog for updates. Who woudl ever have anticipated the length of this journey!

BLOG FLOG - How Resilient Are You?

Sunday 13th February

2011-02-13T15:13:00.002+11:00

Still safe at home

Just a quick update to say a huge thankyou to everyone who prayed, phoned, emailed, facebooked, SMSed and Twittered their support on Friday as we prepped Sam to go to surgery.

We are still reeling from the series of events which ended in seeing us being sent home to rest and recover. We head back in Tuesday afternoon for Sam to see the toe surgeon. Her toe is pounding with yet another ingrown infected nail.

We also need to go and see the lung specialist on Wednesday.

Thankyou for continuing to uphold us in your prayers. We would love to thank each of you in person for your continued love. Sorry if we have overlooked any of you.

For the updated story, its here.

Lung Professor sending us home!

2011-02-11T18:07:00.000+11:00

Lung specialist sending us home. Check up on Wednesday.

Thanks for praying...this is the opposite from what we were first told.

We were expecting to take her to surgery tonight.

Hole in oesophagus

2011-02-11T17:05:00.000+11:00

CT scan identified hole in oesophagus. Waiting for lung surgeon and being admitted.

Friday February 11

2011-02-11T11:17:00.002+11:00

Chest Pains

Went to St Vincents Emergency for blood tests, and xrays last night. No blood clots evident in test results. Let us come home to sleep. Hooray!

Liver

Sam's liver tests came back 3 times higher than last time. Not good.

GVHD of lungs

Our Haemotologist has organised CT Scans today to check lungs for GVHD.

Toes

Sam's toenail is ingrown and infected again. We are waiting to hear from surgeon.

Thankyou to everyone who have messaged Sam and I today. It's amazing to be surrounded by a supportive, caring community.

...being confident in this, that he who has began a good work in Sam will carry it on to completion until the day of Jesus Christ. Philippians 1:6

17th January 2011

2011-01-17T13:48:00.003+11:00

Ear Specialist

We saw the ear specialist this morning and he is fairly happy with Sam's progress, 'well it least it doesn't appear to be any worse,' he says. There is still mild infection in the top of her right ear canal 'which is to be expected' but Sam is to continue with the treatment she is currently using until we see him again in 3 months.

Please pray that when we see him next that there is no sign of infection anywhere and that there is no scar tissue (which he said is to be expected).

Haemotologist

We also saw Sam's haemotologist. We are going to continue on the 5MG (every second day) of Prednisone and try to reduce a different immune suppressant instead. In three weeks time we will be halving her dose of a drug known as CELLCEPT. She takes 4 of these a day so 2 will be a pleasant change and if that works well he will begin to attempt lowering some of her other medications.

Please pray that she will have no adverse side effects to the lowering of these drugs

Infusions

The infusion drug Intagam which Sam has been having since the transplant has been taken of the market because a few people died of cardiac arrest in Europe after having this. Sam has changed infusion drugs to one known as Flebogamma. She didn't react very well to this last time we were in HOAC. It made her heart rate increase and gave her an upset stomach for a few days. Our haemotologist was concerned about this and has decided to trial having infusions every 6 weeks instead of monthly.

Please pray her body produces its own immunoglobins and then she won't need to have this at all.

Toes

Sam's skin is very soft and fragile generally but particularly around her toes. This is a combination of things: GVHD, drugs that weaken her skin tissue and her history of ingrown toenails. Sam has done a few shifts over Christmas in retail and her toes are very sore and swollen the next day. Please pray that we will not see any more flare ups of infection and that she is strong enough to keep working.

Little Softies Business

Sam is keeping herself busy making soft toys and has put up a website where you can buy them, it can be accessed through her wordpress blog or directly here.

I am writing each week again on Girl on a Swing, love you to drop by.

January 3rd 2011

2011-01-03T09:33:00.003+11:00

Prednisone

Today we begin another attempt to drop the prednisone dose to 5MG instead of 10MG every second day.

This is already causing Sam anxiety after enjoying the boost that prednisone gives to her appetite and general sense of well-being but the doctor does not want her on prednisone at all because it is damaging her bones.

The last bone density test showed extreme risk and she had to increase her daily intact of calcium to 3 tablets of the highest possible strength. Obviously osteoporosis is a side effect of all the radiotherapy, the drugs and the chemotherapy but we still seek God's healing hand upon Sam and claim his word as strength to her bones. Please join us as we seek His healing and restoration in this area.

Blood Tests

We return to St Vincents for blood tests and a 3 hour infusion of Intagam on Thursday 6th, this week. These are always long and difficult days as we sit hour upon end in the cancer ward surrounded in frail, people and people hearing their diagnosis for the first time. It always breaks my heart and it is never easy to watch Sam's face as the nurses search for a suitable vein for blood tests and infusions. The liquid infusion is refridgerated before it goes in to her veins so she progressively gets colder and colder throughout the treatment. It is horrible. Please pray that her body produces its own immuloglobins so this can stop this year.

Immunisation

This week I will be making appointments for Sam to have all her baby immunisation needles (except the live vaccinations wihich are too dangerous) again. I didn't enjoy this the first time round but at least I won't have her on my hip as I watch her bottom lip drop. At least she knows what to expect these days - I guess!

Thankyou for upholding us in your prayers. We have enjoyed two of the best weeks in two years. I have written about these on Girl on a Swing... leave me a comment :)

http://wp.me/stZr5-blue

22nd November 2010

2010-11-22T20:34:00.002+11:00

After a wonderful evening at Cam and Ellie's Wedding, Sam struggled all night with cramps and aches in her feet and legs.

She was due for her second shift at her new job but she was in too much pain to go in. Her big toe was inflamed and by this morning it was completely swollen and white with pus. She secured an appointment at St Vincent's at 12.30 and everyone stepped in at work so I could get her there on time.

After 4 or 5 needles her toe was finally numb enough to lance and the toe completely oozed infection and blood spurted out. The doctor was surprised by how swollen and infected it was and sent swabs to the lab. Her foot is wrapped now and she is taking panadol for the pain.

On Thursday we saw the ENT and her ears continue to be seepy and wet but thankfully they are not infected at the moment. She needs to use a special powder in them every day to keep infection away.

Sam continues to take the 10MG of prednisone every second day and returns to St Vincents in two weeks for more blood tests and her antibody infusion.

Thankyou for continuing to pray.

15th November 2010

2010-11-15T17:33:00.002+11:00

Sam started a new job at the Mall yesterday but after one hour she was in so much pain in her back that she wasn't sure if she would make it through the 3 hour shift. Worn out and disappointed she returned home for a huge sleep and then made an appointment to see the oesteopath.

She will seek his advice as to whether she really is strong enough for part time work. She would really like to be working towards financial independance again. She will see him tomorrow before two days of uni exams and then on Thursday we head to St Vincent's late afternoon to see the ENT.

Things appear to be stable after the increased prednisone but until we have blood results, later this week, we won't really know if the dose can be adjusted.

We have started to make enquiries about immunisation and are grateful that 14 months have now passed since the transplant and that Sam has successfully completed 5 subjects at university this year against all odds. Truly she is an inspiration. She has re-enrolled for next year and is working towards a double degree, in both education and linguistics.

If things in Sam's mouth have not improved she will start light treatment in December, when I have finished work for the year and can drive her in each day.

thankyou for continuing to pray for:

liver
mouth
ears
throat
skin
the ability to reduce drugs
and renewed strength to her whole body

Clare xxx

4th November 2010

2010-11-04T21:02:00.002+11:00

GVHD

Unfortunately today's blood results showed evidence that Sam's liver is back up again and Dr Moore says the GVHD is back. Her eyes are also a problem not producing tears so he says this is GVHD and there is evidence that it may still be in the ears and most certainly in her mouth.

Tomorrow she goes back on 10MG of prednisone and we need to urgently get her to the GP for referrals again to see the ear/ nose /throat specialist. The infusion was difficult, especially on such a cold day and we are both sad and emotional about the course of events after being off prednisone for 10 days.

Please uphold us in your prayers...we are so grateful that you do...it is a long, tiring battle BUT we will win.

UPDATE

2010-11-03T10:37:00.002+11:00

3rd November

Sam has been off prednisone for a week and is still off it!

This is such wonderful news but it is not without trauma. Please can I encourage you to continue praying.

Sam's ears are terrible, very sore and seeping yellow fluid at night
She has blood blisters in her mouth
No joy eating
Finding it difficult to speak above a certain level eg. went to dinner wth friends and could not raise her voice loud enough to be heard across the table
Very sore eyes, not enough water (or whatever) being produced by her tear ducts to refresh her eyes
Bleeding nose
Unsettled tummy
Gagging when eating and the sensation that she is going to vomit continually
She is exhausted

The Endocrinologist has just increased her Vitamin D to try to help her feel less tired.

Tomorrow is a big infusion day at St Vincents.

Please pray that I can get her seen by the Ear/Nose/Throat Specialist...they are such busy doctors and she is regarded as 'quite well' now and gets less attention...the things we are left with it seems we are meant just to accept!

I am not happy to accept this is as 'good enough.' I want my daughter to be completely whole.

Thinking of the scripture that says He will complete the work he has begun but the bell has rung and it is time for me to teach Maths.

28th October 2010

2010-10-28T14:52:00.002+11:00

We are down to 0MG of Prednisone!!!!!

This is a first since the day Sam was diagnosed on 28th January 2009. It has been a very challenging few days and her mouth has completely flared up.

Her swollen tongue is lined with white blisters and clusters of them surround her mouth. Her jaw aches and it is so difficult to eat. She is thin.

She is hungry most of time but eating is no fun, tastes have changed and she needs to apply artificial saliva to her tongue.

A yellow fluid seeps from her mouth as she sleeps at night, staining her pillow. She wakes through the night parched for water.

I am waiting to hear from both her haemotologist and endochrinologist for the results of last weeks blood tests. Next week she returns for a 3 hour infusion of intagram. Her ears are sore. She feels weak and dizzy most of the time but she is brave.

She is handing in assignments at Uni and doing well with her results, it looks like she might have her old job in retail back for the Christmas break (just a few hours a week) but this is positive. A return to a more normal life with the satisfaction of earning some money.

Please pray:

for her mouth
for her ears
for her to be able to eat
for her emotions
against infection

Thankyou for walking alongside us

Clare

18th October 2010

2010-10-18T21:35:00.002+11:00

Thankyou for checking in and continuing to pray. It has been an incredibly long journey and the fact that you still care enough to read this means the world to us.

It has been a difficult few weeks especially with the GVHD of the mouth. We have reduced the prednisone to 1MG and have held it there for the last week. Sam experiences tremendous pain and continues to find eating very difficult but we must perservere and get her off this drug if possible.

On Thursday we will head in for more tests and more news of how she is tracking.

We have found the Manuka Honey to provide some relief for Sam's mouth and are praying that it heals all the ulcers completely. We have a family ritual now where after dinner each night we all take a spoonful of this disgusting syrup and toast Sam and her healing, our way of helping her feel like she can do it! It really is gross to taste!

Today Sam and I pulled together a new and updated resume and she will seek some emloyment over the Christmas holiday period. Please pray that she finds a job that works for her, where she can have fun and find her independance and usefulness to others again. She is such a brave girl and we are so proud of her efforts to keep going against all odds.

Please pray that she gets off prednisone completely without her mouth getting worse and that she will be able to reduce other immune suppressants.

Today she posted a thankyou on her blog www.aplacetogetlost.wordpress.com and my update is here on girl on a swing.

Thursday 7th October

2010-10-07T20:23:00.002+11:00

The Highlights

My mum came all the way from the Central Coast today to be with us for our big day at St Vincents. She did this by catching too many trains and buses to count but she said it was 'splendid' to see us.

I finished my assignment for Uni.

We had coffee at our favourite place 'The Bunker' in Liverpool Street.

Liver

This is the main highlight really! Sam's liver is normal. This is the first time in over a year that it has been normal and we are delighted because many transplant patients have severe problems with their liver for life.

We are also head over heels to reduce her daily plethora of drugs by 4 drugs a day (the 4 that have stabilized her liver).

Sam is very happy about this.

Mouth

Her mouth and tongue is completely covered in blisters and welts that show that she is suffering GVHD. It is extremely painfall and makes her sensitive to so many foods. Her weight has dropped quite significantly due to the difficulty associated with flavours and foods and a blistered mouth.

If this is untreatable Sam may loss the sensation of taste altogether and as a result of the scar tissue, which will stretch over areas of her mouth she will experience a loss of wetness and ability to form saliva.

We really need a miracle here.

Sam's doctor suggests trying all that we can, things that will numb it, prednisone liquid gargle, diprosone cream...

The most effective solution is to have ultra- violet light treatment which would need to be done four days every week and be quite draining added to her university schedule. So he said let's wait, get you off prednisone and see what happens. If things have not improved by the time she is off prednisone then she will be going back up to 10 mg of prednisone again every second day. Then the light treatment would also commence.

Toenails

These are not infected but they are sore again and seem to be growing into her skin instead of normally.

Thyroid

Today's blood tests indicate that Sam's drugs are making things a little over active again. Tomorrow we are back to see the doctor in endochrine to see what to do about this.

Thanks for your prayers and 'thanks be to God who always leads us to victory through Christ Jesus.'

Tuesday 5th October

2010-10-05T10:33:00.002+11:00

It's been almost a month since I've updated here so I guess that shows how far we have come. There have been a few dramas, things like Sam's throat getting so seriously blocked that she keeps getting a choking sensation. It's crazy! Her eyes bulge, she coughs, her voice is raspy... so she went for an xray but nothing showed up...(not even her thyroid - funny that!)

The ear doctor is pleased that her ears are 'no worse' they are still full of fluid and uncomfortably blocked and she continues to puff them full of dry ear powder (not on the NBS and very expensive ear powder) and with anti-biotics. It is very frustrating for her but she has not 'lost any more hearing' the doctor says. So we take this is as a bonus, a kind of forward progression.

On Thursday we have our next appointment with the haemotologist. This is the longest ever between visits in 22 months so this is wonderful ... a whole month off from haemotology! Sam will have blood tests to check everything on Thursday and then have the 3 hour infusion of intagam.

On Friday we go back again to see the endochrinologist to check up on all things pertaining to the thyroid (that no longer exists) but to check all is well with the dose she is on to regulate things etc.

We haven't seen the toe surgeon for about 6 weeks either and the manuka honey seems to be doing the trick at keep the mrsa at bay.

Sam continues to see her wonderful oncology counsellor each fortnight and attends her private pilates class every Monday, this is great...her muscles are getting so strong. She is blitzing university and surviving still (it seems) on the lower dose of prednisone. Her current dose is 2MG as of last Tuesday and apart from a very sore tongue which is covered in blisters and throbbing - she is determined to persevere. We will check this with Dr Moore on Thursday. Please pray that he lets her stay on the lower dose and that all signs of GVHD go away.

Also as the weather warms up please pray for her to not get burnt or anymore flare ups of GVHD of the skin. Many of her drugs make her skin extremely sun sensitive and the risk of burning is intensified after all the chemotherapy and radiation of last year. Sam has to take so many precautions to protect her precious skin.

Please pray:

That she completely comes off prednisone
That she begins to reduce her cellcept
That MRSA is gone from her body
That her ears heal miraculously
That her thyroid levels remain perfect
That there are no liver complications as we lower drug doses
That there is no GVHD anywhere in her body
That her mind (and mine) stays positive and focussed that we serve "an all things are possible God"

New post "Breathe" on www.girlonaswing.wordpress.com

Thursday 9th September

2010-09-09T18:44:00.002+10:00

Sam and I went to haemotology/oncology today for her monthly infusion of intragam. This is a 3 hour infusion that usually makes her feel dizzy, cold and exhausted but today she handled the procedure really well.

Dr Moore is very pleased with her blood tests and would like us to keep tryig to get her off the prednisone. The GVHD blisters in her mouth are clearing when she applies a special cream, the doctor has subscribed and she has managed to stay on the 4MG dose for almost 2 weeks without too many hurdles.

We will try to lower the dose further to 3MG next Tuesday. Please pray that this continues to be effective.

My friend Dale researched MRSA for me and purchased Sam some medical manuka honey ointment which seems to be working well on her toes. She also tried the oral manuka honey but she can't stand the taste. We will try to persevere with mixing it with other things because studies show it can be effective at getting rid of MRSA.

We would really appreciate you praying for our dear friend Sam Chapman. My latest blog is on www.girlonaswing.wordpress.com

Tuesday, 31st August

2010-08-31T17:30:00.002+10:00

Thankyou

People have been asking how it went a couple of weeks ago when we went to St Vincents. Thanks for asking, it has been such a long journey and I am amazed that people still want to know.

Sam's toes are infected but there is not much we can do. The surgeon says we will 'watch' them rather than doing surgery this time, that they are not as bad as the other two were but that it is quite possible that every toe could eventually be infected. The MRSA runs through her body, effecting her toes and her ears with infections that do not respond to antibiotics.

It is very strange as a mum, to be told your daughter has MRSA and to comprehend that Sam as a condition that 'does not respond to antibiotics.' Instead of posting an update here I just internalise the frightening possibilities. Eventually I give those fears to God but they hover in the shadows in a way I can't explain.

There are so many monotonous unknowns. Not monotonous to me but impossible to explain all the same. How do you explain a condition (or multiple conditions) that don't go away. There is nothing 'new' to tell, no fresh miracle, but the wonder of survival and that we still stand.

Tomorrow I am going to try to drop the prednisone again. sam has managed this week on 5MG and it seems to be that when we drop below this level that we see things fall apart. How can 1MG make such a huge difference I wonder? So if you are still praying for Sam, please pray that this time there is enough cortisone in her body to handle the reduction.

There are endless complications attached to the plethora of drugs she takes, so many side effects to them all. Her skin is thinning, her bones are weak, her body is full of infection and the battle rages in her mind.

If we get her off prednisone we can reduce the other drugs, the ones that suppress her immune system. Whne we can get her off those, I will be able to take her for all the immunisations she had as a baby. That will be when we start to set her up to be 'more' normal. Her immune system is the same as a new born baby before all those needles that commence at 2 months of age.

It is a long way to go for us...but you are here, checking my post because you are still willing to pray. So I say thankyou, with a heart full of gratitude and a heart full of tears that I wish I could cry.

This is why I swim

19th August 2010

2010-08-19T17:45:00.004+10:00

Blood Results

On Tuesday the 17th Sam and I headed in to St Vincents for her regular blood tests and to see the haemotologist. We discovered that her immunoglobins have further decreased and that she will need to have a higher dose of intragam on her next infusion day. Immunoglobin is needed for the body to fight infection and Sam is currently battling her first ever flu since diagnosis.

Toes

Another ingrown toe nail has developed and become infected in a different toe to the ones that previously required surgery. Recent swabs confirm that MRSA is still presnt in her body and since she is immune suppressed there is really nothing we can medically do. We are praying for God's divine protection to supernaturally fight on her behalf. Tomorrow we have secured a specialist appointment with the surgeon to see if surgery can be avoided or whether Sam needs yet another operation.

Prednisone

Next Tuesday we will again try to lower her current dose of prednisone from 7.5MG to 5Mg. Please pray we are able to do this without the side effects she has experienced in the past.

Please pray for Sam's ears, her flu, her toe and for restoration of her body.

This weeks post 'boat' on www.girlonaswing.wordpress.com

10th August, 2010

2010-08-10T10:36:00.002+10:00

Thankyou

Heidi Wyseman and Connect Group

This is just a note to say a huge thankyou to Heidi Wyseman and her connect group for secretly organising to pay for a term's worth of Pilates Classes for Sam. The teacher was so impressed and blessed by Heidi that she also gave Sam an extra term's worth of classes herself. So we are excited that Sam will be working towards a fit, healthy and strong body.

The Pilate Teacher is Lisa Bayfield at www.villagestudio.com.au

Jane Grover

Thanks also to our beautiful friend Jane Grover who cooked for us last week. Jane is speaking at
Everywoman on Wednesday 25th August and her website is www.janecookslive.com.au

Latest blog "Miracle"

4th August 2010

2010-08-05T18:09:00.002+10:00

HOAC

Sam had blood tests and intagam in HOAC (Haemotology and Oncology Ambulatory Care - for those who might be wondering) today.

It is never fun! Poor Sam, has put herself to bed already and its 6pm. The intagam is infused over 3 hours to give her body the antibodies it can no longer produce in her immune suppressed state and we are hoping that this will aid the fight of MRSA infection in her ears.

Sam had blood tests as well but no results as yet. I will keep you posted as I get news.

Dr Moore suggest we trial reducing prednisone to 7.5 MG again on Friday. Please pray that we can reduce this successfully and finally get her off this drug, that her body would produce its own cortisone.

Thanks for your prayers...this week's post "Pray"

27th July 2010

2010-07-27T20:13:00.002+10:00

Ears

Sam saw the ear specialist today and we are excited to share some good news. Her ears are still wet but alot less inflamation. The inflamation, he says, is chronic but not infected at the moment. Her hearing loss has not been progressive since her last visit. Sam has been advised to continue the daily treatment to both ears for the next 8 weeks and then have another review. Thankyou for your continued prayers. It is so incredible when we get news that things have stabilized.

Cold

Sam has a head cold at the moment and saw the GP today. Please pray this doesn't develop and she quickly recovers.

Counselling

She also sees the counsellor tomorrow after a very successful session last week.

Pilates

Sam has commenced a specialised Pilates class this week at the recommendation of the oesteopath. This is a small class of three and attention is given to the individual needs of the participants.

Liver

Next Thursday 5th of August Sam returns to St Vincents for a 3 hour intagam infusion and to see the haemotologist.

Intagam Infusions and Haemotology

Please pray that we might be able to start reducing the prednisone again with success, that her body produces its own cortisone. Please pray for all the blood results to show evidence of health in her liver, miraculous healing of staph and that her thyroid levels will be stable.

Please pray for her energy and emotions as she returns to Uni (3 subjects this semester) and tries to return to a normal life.

Thankyou for standing with us for miracles

This week on girl on a swing "Sky"

Wednesday 21st July

2010-07-21T09:50:00.003+10:00

Update on Sam
We have had a few set backs this week and are very grateful for your prayers

The enzymes in Sam's liver are up from 30 to 300, her toes are infected with MRSA (a staph infection that does not respond to antibiotics), her weight is down to 44 KG, she has pain in her mouth from GVHD (Graft Versus Host Disease), her ear specialist was in surgery so we go to see him next Tuesday instead. We have recommenced the monthly, 3 hour infusions of intagam in Oncology to help her body fight all the infections. Her prednisone is back up to 25 MG after weaning her all year to get it as low as 3MG. She is very sad and anxious and seeing a new counsellor today.

Thankyou for your prayers.

Since we have a great high priest, Jesus the son of God, let us hold firmly to the faith we profess...Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need. Hebrews 4:14,16

http://www.girlonaswing.wordpress.com/
http://www.aplacetogetlost.wordpress.com

19th July 2010

2010-07-19T18:52:00.002+10:00

Tomorrow Sam and I head back in to St Vincents after I finish work to follow up on last weeks test results, to see two different specialists and to pick up replacement drugs from pharmacy.

Ears

Sam's ears continue to be wet, crusty and blocked. She feels very dizzy. The ear specialist put her on a special preparation made up at the hospital, a type of powder that she puffs into her right ear every night. Her left ear is sore again too so it will be good to see the doctor and get his advice.

Prednisone

Sam is still having 3MG of prednisone every day but continues to have no appetite. The little she does eat, she often throws up and her weight is only 47 KG. We will ask Dr Moore tomorrow whether it might be better to increase the prednisone dose.

Mouth

The GVHD in the mouth is stable but not improved. Sam finds it hard to brush her teeth and the taste of food around the sides of her mouth makes eating very painful. Her lips are constantly peeling off in thick strips causing them to sting.

Toes

Sam's left toes started to ooze fluid again last week so we had swabs taken to determine whether there is any infection still in them. We hope to get these results tomorrow as well.

Back Pain

Continued tightness and pain in Sam's back led her to go to see an oesteopath. The pain is so intense that she finds it difficult to sleep. Sam has always had problems due to scholeosis and has often seen a chiropractor in the past. Her oesteopath said that there is a build up of tension around the area in her back from the many bone marrow biopsies and lumbar punctures Sam had to endure last year. Sam will continue to see the oesteopath regularly and he also recommended a Pilates class that specialises in small group work.

Counselling

Sam was able to see a Clinical Psychologist who specialises in oncology recently. After the initail appointment however she rung to refer Sam to someone else. This caused Sam much stress because of the ongoing need to retell her painful story. Anyway, we move on and Sam will see the new person this Wednesday.

Sleep

Sam is struggling to sleep without the use of a drug called Ativan which is a muscle relaxant. We would like to see her relax enough to be able to sleep without the aid of drugs.

Please pray that:

Sam can keep on the low dose of prednisione and possibly reduce it further without complications.

For the results from the toe swab to come back clear

For her muscles in her back and body to relax and loosen

For her ears to be healed of infection and the wet environment to become miraculously dry and normal.

Please pray for a strong connection with the new counsellor and an affinity so that all that Sam has endured can begin to be processed and that as a result sleep will come easily and her full health will be restored.

This weeks post "Butterfly" is also up on www.girlonaswing.wordpress.com

Tuesday 29th June

2010-06-29T19:30:00.002+10:00

Today was the first appointment of many for the start of the school holidays. Sam meet me at school after I had spent two days at an inspirational inservice and we headed straight to St Vincents.

Things to be thankful for:

1.The run was quicker than usual and it was evident that school holidays have begun.

2Less traffic will mean less stress as we begin our frequent sojourns to St Vincents this week.

3.We pulled straight into a car space behind the clinic just by the Nike shop.

4.Sam's liver is still stable on the reduced prednisone and we still see most blood counts doing well.

5. Sam had a wonderful weekend away with friends and though she could quite manage the pace of late nights, cocktails or long walks through city streets she did have a fabulous time and did not need to contact me once.

Things to pray for:

Ears: Tomorrow we return to St Vincents to see the ear specialist and try to determine what course of treatment Sam needs to be on to get rid of the staph infection. Please pray that it has begun to respond to the antibiotics and that there will be no more hearing loss.

GVHD of mouth: Dr Moore was in Europe when we first noticed symptoms of GVHD of the mouth. If you have been following the blog you may remember that the registrar doctor wanted to put her prednisone up to 25 MG and I contested his decision. Dr Moore is very pleased that I made that call (go me!) but did confirm that Sam definately does have GVHD of the mouth. These are painful sores that reduce her desire for food, cause pain and discomfort in mouth and sensitivity to certain foods. Today Dr Moore prescribed 'baby prednisone' drops for Sam to gargle to ease the pain. Please pray that all symptoms go and she recovers quickly.

Stomach aches and cramps: This is another new problem that we don't understand. After eating Sam often gets severe cramps and the sensation that she needs to vomit. Obviously this is very distressing. She has lost weight again and is back down to 46KG. Not good!

Blood Tests: Most of the blood results are very good except the immunoglobins. This is a protein in the white cells that aids the fighting of infection. Sam will need to have an infusion of intagam to help her replace immunoglobins. Unfortunately she finds this procedure most stressful. A line needs to be inserted into a vein in her hand and a cold fluid is pumped into her intravenously over a period of three hours. This will take place on Friday afternoon after her morning appointment with the oncology counsellor. Please pray that there is not a long wait to be seen by a nurse. Pray that the infusion also gives Sam's body the added ability to fight the staph infection.

Fertility Tests: Still no news. Sam has not had her period return since coming off the oestrogen pill which was necessary for the tests. Since being off oestrogen she has also had many 'hot flushes' a symptom of early menopause which is another predicted risk for someone in her condition. Please pray that God's mighty hand restores her ability to ovulate and one day have a baby of her own. We know that medically this is not something the doctors give us much hope for. She is going to restart the oestrogen pill.

Bones: Please continue to pray that her bones strengthen as she comes off prednisone. We are leaving the dose at 3MG and hoping to see recovery of the mouth so this can be reduced further.

If you are interested you can read my latest blog Dominio

Monday 21st June, 2010

2010-06-21T17:50:00.003+10:00

Latest Update

John Moore just phoned. Ear swab just back...still showing staf infection. John concerned about potential for hearing loss and is making calls now to get Sam to see an ear specialist at St Vincents urgently.

The mouth swab is also back but not showing evidence of GVHD, so leaving prednisone at 3MG for this week. John Moore will also be contacting endocrine in regards to Sam's menopausal symptoms (hot flushes etc.) I can't remember if I mentioned this in the last update? See earlier today 'older post' with all the extra bits of goss'

There is always so much going on!

Sam secured an appointment for counselling with the oncology psychologist for Friday next week.

So much can happen in an hour! Been to the gym and now to work out whats for dinner...

Monday 21st June, 2010

2010-06-21T16:28:00.002+10:00

Ears

Sam still has a staf infection in her right ear. This has gone on for 3 months now and she feels dizzy and off balance. The specialist says to wait a week and see what happens. He took a swab of the ear fluid. We are not feeling very confident about the way he is handling this. He has taken her off anti-biotics and seems confused. We are planning to seek advice from another ear specialist and are hoping to secure an appointment.

Haemotology

We are due to have blood tests again this week at St Vincents. Dr Moore is back and we have an appointment with him next Tuesday.

Prednisone

Sam seems stable on the 3MG of prednisone though her mouth is still very sore and her eyes very dry. We are not sure if it is GVHD or not. We have left messages for Dr Moore but assume he is overloaded after his return from Europe. He is an excellent doctor however and the swab results from her tongue must be back, so I am hoping that 'no news is good news.' Please pray that it is safe for us to continue to reduce the dose.

Emotions

We contacted the social worker at St Vincents and she recommended an oncology counsellor for Sam. We have emailed and called to leave messages. Please pray we get an appointment soon.

Fertility Tests

No news yet!

Everyday is a huge battle for Sam as she comes to term with all she has been going through these last 18 months. We are so thankful to God for the many milestones she has reached but thankyou for your ongoing interest and prayers.

My Mum

Can I also ask for prayer for my dear mum, Jo Peacock who has carried us in her prayers and heart these last 18 months as well. Many things have been going on with my other siblings during this period (my sister has lost her home), my brother has Graves Disease, my niece is getting married and now mum has a heart problem (blood pressure 200/100). She is undergoing tests. I would love it if you could pray for her also.

New Post Clarity on www.girlonaswing.wordpress.com

10th June 2010

2010-06-10T20:13:00.002+10:00

Blood Results

Not all the blood tests are back yet but her liver looks good and so does her haemoglobin, platelets, white cells etc..

GVHD mouth and eyes

We saw the registrar on Tuesday as our specialist is away and he says Sam's description of her mouth discomfort and eye dryness indicated GVHD.

GVHD (graft versus host disease) is a very series condition after a BMT if not treated correctly and finding the best way to manage it is crucial. The doctor was keen to put Sam's prednsione dose back up to 25 MG and we felt very deflated by this. If you have been following our journey you will know it has taken us the past 6 months to get it as low as 3MG and Sam was due to reduce it to 2MG this week, so going back up to 25 MG feels like a big step backward.

I negotiated and debated (gently) with the doctor and he sent us away with dexamethazone tablets to crush and mix as a mouth wash instead. However if symptoms continue or worsen he wants to hear from us immediately as GVHD can very quickly get out of control and if this were to happen it can be difficult to reach control. We have no plans to reduce the prednisone below 3MG for now.

I had a wonderful chat with Judy Chapman and compared notes on Tuesday night about our two Sams. Judy told me of a man they meet at RNSH with severe GVHD of the eyes who now needs to have drops made from his own blood products to aide his damaged eyes as a lifelong thing. So we will not be taking any chances, any sign of things getting worse and our Sam will be back on 25MG.

Sam has Uni exams tomorrow and is most anxious about driving through peak hour traffic to get there in time. We are reconsidering external study for next semester and are thankful for the good relationships she has made with the educators at the Uni who are always very considerate of her condition.

Ears

The ear specialist has taken Sam off anti-biotics for one week and will see her again next week to take swabs to see if the staf infection is still present.

Thankyou for your prayers

Clare

7th June, 2010

2010-06-07T14:42:00.002+10:00

Mouth Ulcers

Over the last 7 days, Sam has developed mouth ulcers all around her tongue and gums. I called HOAC at St Vincent's and spoke to the doctor who is taking care of Dr Moore's patients while he is on leave. He said Sam may have GVHD and asked us to come in tomorrow to see him. He will take swabs and send them to the lab. We may double the prednisone, we may attempt to reduce it by 1/2 MG per week instead of by 1MG. This sounds easy but to Sam this news is devastating because we can not lower any of the other drugs until she is off prednisone.

Stomach Pain

Sam takes up to 22 tablets every day depending what day of the week it is. These tablets seem to be getting increasingly difficult to swallow, especially when she is off her food (also a side effect of the reduced prednisone) and she is often experiencing an unsettled stomach, vomiting and constipation.

Sore eyes

Today Sam also has very sore eyes which may also be a result of GVHD.

Ears

Tomorrow we are scheduled to see the ear specialist to follow up on the antibiotic treatment Sam has been having for her ears. These are drops three times a day as well as an ointment that she applies to the ear drum. Today she woke up with fluid seeping from her ear and this is quite unsettling as this is how the problem first manifested.

Fertility Tests

Tomorrow is also the scheduled date for Sam to have the fertility tests. This time we have followed closely to the directions of the endochrinologist and we are hoping to getting a clear result. Please pray for the miraculous as we have already been told that Sam has no chance of conceiving naturally after all the chemotherapy, TBI etc. We believe we serve a God who maes the impossible possible.

Emotions

Sam is facing a huge battle emotionally, as is to be expected. She is finding it quite frightening to be left on her own and has been diagnosed with anxiety and depression (is it any wonder)! Please pray for our precious girl for the full restoration of all that his been lost, for encouragement and the ability to keep getting back up to fight the battles she must face on a daily basis.

Thankyou for continuing to pray and for friends who make the effort to spend time with Sam so that she is not alone, especially during week days when I am at work.

God is Faithful

"Who shall ever separate us from God's love? Shall suffering and affliction and desolation? Or calamity and distress? Or persecution or hunger or destitution or peril or sword?...Yet amid all these things we are more than conquerors and gain surpassing victory through Him who loved us.

For I am persuaded beyond doubt (am sure) that neither death nor life, nor angels, nor principalities, nor things impending and threatening nor things to come, nor powers. Nor height nor depth, nor anything else in all creation will be able to separate us from the love of God which is in Christ Jesus our Lord."

New Post - The Maze http://wp.me/stZr5-maze

1st June 2010

2010-06-01T19:25:00.003+10:00

Prednisone

Tomorrow we make another attempt to lower the prednisone. It didn't work last time we got this low. We went from 5MG to 2.5Mg and Sam's liver reacted, flared up, she had nausea, vomiting, went off her food, her thoughts went fuzzy, she snapped when she didn't mean to and she cried and cried. So we doubled it to 5MG again and then we spent a week on 4MG and now tomorrow we reduce it to 3MG and Sam is nervous and so am I.

She's been vomiting on 4MG but not as much, we think its coffee and tomatoes and flavour that makes her vomit so we've resorted to porridge and mashed potato (both with cream - I like her to put on weight, unfortunately in the process so do I - put on weight, that is!) I am trying to be a bland, boring cook...but I do so love to cook!

Something about getting as low as 3MG is frightening, with it comes mood swings and perhaps a liver flare up that we will not discover until we go for blood tests next week.

So we ask you to pray. Coming off prednisone is key for her to reduce immune suppressants. While she is immune suppressed she is susceptable to every sickness that passes her and I wonder sometimes what bugs I may be carrying working in Kindergarten. I remind myself we are safer with me there than we were in hospital all last year.

Ears

Sam continues with anti-biotics for her ears and sees the ear specialist again next Tuesday morning. Please pray they have worked and that she is not at risk of going deaf. This was the specialist's concern when he saw the thickness around the ear drum and the presence of 'staf' aurreus that has persisted.

Physiotherapy

Sam has been twice to physiotherapy since her fall. The first visit improved things significantly and after the second he said she doesn't need to come. This is wonderful because at first he thought we would need many visits to see any change. Praise God! Her toe (the little one on her left foot) is still really bruised and sore.

Emotions

Please pray for Sam's thoughts and her ability to be emotionally strong. Ever since she fell she has really struggled to be alone. Please pray protection over her mind. We have been praying so much together as a family, asking God to make us strong and actively 'putting on our armour.' My parents taught me, my sister and brother to do this as children and its very powerful and visual. I love visual reminders of God's power.

Thanks for sticking by us on this horribly, challenging and long journey. We can see Sam getting better. She is transforming before our eyes, she is considering full-time university, she is driving and seeing friends and planning a holiday. Please pray she continues to feel confident to do this and physically able as well. These are great reminders of how far we have come. We praise God for His faithfulness to us.

We are thankful to friends, old and new, who press in to care, to laugh, to cry and to carry us. You make us strong and rich. We delight in the connections.

The staff at school have also been incredible to me and I could not possibly work full time without their support. So thankyou, you know who you are!

And the children are so delightful...where would we be without the laughter of children?

You can read my new post Weather on http://wp.me/ptZr5-d4

Or try Clare's blog in the sidebar.

Much love

Clare

14th May 2010

2010-05-14T10:10:00.003+10:00

Sam's Fall

Many may know by now that Sam had a fall yesterday and thought she had broken bones. The xray shows that her little toe is a little disjointed, its swollen and bruised and very sore. She has soft tissue damage to her knee and is only able to walk with the aide of crutches.

We are thankful no bones were broken especially with the knowledge we have from the bone scans that tell us how fragile they are.

Ears

Sam's ears are still infected with staf. This makes her feel dizzy and disorientated but again I am almost thanking God that she fell as I was able to follow up the swab results and discover that she needed to be on a stronger anti-biotic. Having to come home from work enabled me to make all the necessary phonecalls and run around to pick up scripts etc.Please pray for her ears to recover with no loss of hearing and no more fluid loss.

Blood Results

I have taken leave today to care for Sam and get her to St Vincents for the blood tests that were due yesterday. These tests are standard tests that monitor her progress post BMT but in particular we look to see how Sam's body is coping with the reduced prednisone. Please pray that nothing flares up as a result of the lowered dose and that she can come off the prednisone altogether and then begin to reduce some of the other immune suppressants.

Headaches, Appetite loss, Difficulty sleeping, Agitation

Please pray for Sam who is experiencing all of the above as she comes of her drugs. Every little hiccup is a huge frustration after the 15 months of illness she has already endured.

Fertility Tests

These are being done again on 8th June, please pray that God does a creative miracle to restore Sam's ability to have children one day in the future and that her bones grow strong enough for her to one day carry her own child.

Pray too for our family who are weary from the relentlessness of this journey.

New blog "walls' on www.girlonaswing.wordpress.com

Monday May 3rd

2010-05-03T20:37:00.002+10:00

Exciting News

Sam collected her assignment from Uni today and was excited to discover she got a Distinction.

Please pray for the following things:

To continue to safely reduce prednisone dose. Sam has been on 5mg for 1 week and reduces this again to 2.5mg next Tuesday. It is getting increasingly difficult and stressful for her to eat and she is feeling quite agitated and tired.

For the infection in both Sam's ears. She still is fighting this infection after being on a strong anti-biotic. The local doctor has taken her off the anti-biotic and we have an appointment to see the ear specialist this coming Thursday 8th May.

For Sam's bones and protection against breakages. Her bones are extremely weak as a result of all the treatments and drugs whilst battling leukaemia.

For the miracle of ovulation. Sam is having to take the fertility tests again because they were not done correctly last month. There is some evidence that her pituatry gland may still be working.

For her thyroid dose to find the right balance to enable her body to have normal thyroid function.

For her skin which has unusual markings like bruises and is extremely sensitive to just about everything from heat to cold, from grass to sunlight. It reacts and rashes very easily.

Please pray against GVHD which is an extremely serious and potentially life threatening condition after BMT.

Please pray for our dear friend Sam Chapman who is experiencing extremely painful hands and feet from GVHD, has no saliva, no taste buds and sore eyes, also a result of GVHD. For more details check out his blog in the side bar.

Thanks for continuing to stand with us for the completion of what God has begun in Sam's life.

New Blog 'The Map' www.girlonaswing.wordpress.com - Click on Clare's blog in the sidebar.

This Week

2010-04-26T17:51:00.002+10:00

Tuesday 27th April

Sam sees her haemotologist Dr Moore at 3.45pm today and then the surgeon Dr Hargraves at 5pm

Please pray that all her blood tests come back as normal and that we are able to continue to reduce her Immunosuppressants and Prednisone.

Please also pray for her ears which continue to cause her pain and fluid discharge.

Her toes seem to be healing well and she was able to go out with friends and walk for a little while today.

Please pray for her appetite to stay stable as she is really trying hard to eat.

Also please pray for her skin that we can either get some explanation about the bruises that have appeared or that they will just go away.

Over the last two days Sam has woken up vomiting, please pray that this also stops.

Friday 30th April

On Friday Sam will see the Professor of Endochrine to discuss how to strengthen her bone density and to check her thyroid dose and blood tests.

Thanks for your continued love and support. We really value your prayers.

New Post: Focus www.girlonaswing.wordpress.com

Wednesday 21st April

2010-04-21T22:28:00.002+10:00

Sam was in so much pain with her toes this afternoon that I took her to the guys at our incredible local pharmacy to see what to do. They suggested a visit to our GP since her toes looked red and 'angry.'

So we went to our doctor and it turns out that not only are her toes battling infection, she also has an ear infection in both ears as well. Dr Ling said Sam must have a good pain threshold because her ear drums were as red as tomatoes.

Jach also has a sinus infection and is on anti-biotics.

Sam is in good humour though banished to the couch for 10 days with feet elevated.

We will be seeing the surgeon again on Tuesday the 27th of April and seeing Dr Moore our haemotologist on teh 27th as well.

Please pray against GVHD as Sam's prednisone is being reduced and that her body has the capacity to fight infection.

Our appointment with the professor of endochrine is booked for Friday 30th of April. We will be able to gain more insight about her thyroid and her bone scans.

Thankyou for all your love, support and prayers. we couldn't do this without you.

New post "caves" on www.girlonaswing.wordpress.com

Monday April 19th

2010-04-19T17:50:00.004+10:00

Post Surgery Update
Sam is now out of surgery and Clare is waiting to be allowed into recovery.
During surgery a hole was found in Sam's bone so Clare is thankful that they elected to go private rather than wait for public.
Clare will get clarification from Dr Moore tomorrow as to whether this means there is/was an infection in the bone.
Thankyou for praying over Sam's bones and that the Holy Spirit would continue to speak with Clare about Sam as many times it is Clare who has been alerted to possible complications for Sam rahter than the doctors.

Wednesday 14th April

2010-04-14T18:20:00.005+10:00

Ingrown Toenails

Today we saw Dr Hargraves at St Vincent's and spent about two hours discussing Sam's condition including her transplant and further complications.

He informed us that the swab from Sam's ingrown toenails had shown that she has a MRSA Staf infection and the only way for this infection to go away is to have her toenails surgically removed. Topical antibiotics and oral antibiotics are not strong enough to treat this type of infection so during surgery antibiotics will be given via injection.

Surgery is to take place this Monday in the Private Hospital at St Vincent's. To have the procedure done publicly would require at least a month of waiting and we don't really have the time to risk the infection spreading to her bones since she is immune suppressed.

Dr Moore is checking to see what Sam's intagam levels are and whether she will need to go in for a 3 hour infusion of these antibodies to further prep her for surgery.

Please pray:

That the procedure runs without complication
That infection is controlled
For fast healing and speedy recovery

Bone Density and Thyroid levels

Next Thursday we are due to meet with the doctors in Endocrine to discuss the best way forward for Sam's bones and whether she needs to be on a stronger course of drugs. She has recently commenced taking Vitamin D and Calcium tablets to strengthen her bones.

While in Endocrine we will also be discussing the dose that Sam is taking to correct her thyroid function levels. These levels are still 'all over the place' and it can take months and years to get the dose correct.

Please pray:

That God repairs Sam's bones and that she is protected from oesteoporosis.
For wisdom for the doctors to regulate the dose of thyroxcin so that Sam does not have the mood swings and side effects associated with a thyroid imbalance.

Cortisone and Immunosuppressants

Sam's cortisone has been gradually reduced over the last two weeks and this coming Saturday it reduces further to 5 MG. This is a real test for Sam's body. She has been relying on this drug continually since she was diagnosed with Leukaemia in January 2009. The last time she was on 5 MG her body reacted badly and her liver function tests were terrible. As a result many of her drugs had to be suddenly increased and it felt quite frightening and much like a backward step to Sam's recovery.

Dr Moore is quite anxious to get Sam off the cortisone because amongst many things it is bad for her bones that are already in the range of high risk.

Sam will not be able to reduce her other immunosuppressant drugs until the cortisone is well under control.

Please pray:

That Sam's body produces its own prednisone as the drugs are reduced
That her liver and all major organs remain strong, including her skin, her eyes, her kidneys, her heart, her mouth and that GVHD is gone completely from her body

Fertility Tests

On Friday we return to St Vincents early for tests for all of the above things, many routine 'post transplant tests' and an extra test to see of Sam might possibly still be fertile.

It is Sam's strong desire to one day be a mum and when told she might never be able to have children as a result of Leukaemia, Sam did everything possible that one day she may infact defy the doctor's words.

I have watched her endure the most horrific treatments including an ovary biopsy and the painful injection of a pellet sized drug into her stomach each month last year during chemotherapy. When the MRD showed that Sam was high risk of relapse of Leukaemia and needed a Bone Marrow Transplant she was told that the pellet injection would no longer offer any security and that it would infact be impossible that she may ever have a child.

As many people know, we flew to Melbourne (thanks to an anonymous donation of money) and Sam had prayer from Bill Johnson and his team at Peter McHugh's church.

He prayed very specifically over Sam she would receive complete healing from Leukaemia, that the Bone Marrow Transplant would be a success and that she would have her ovaries supernaturally protected.

Last time we saw Dr Moore I asked if there were tests to see if she may infact still be fertile and he graciously said that we should at least run the tests.

Please pray:

For God's miraculous covering of Sam and for a great testimony of His tremendous power to do above and beyond what we could dream or think.
Pray for Sams emotions to be protected as she undergoes yet another confronting test and awaits the results
For our family to be strong and continue to declare that we will not be moved by what we see but by what God is able to do.

God's Strength

As the school holidays come to a close and school term commences, please pray for the strength and the wisdom needed to juggle all the medical appointments, university for Sam and Reid and I both needing to work full time. Please pray for Jack and Emma who so often take a place in the background because of all that is going on for Sam.

Please pray for Emma who is changing courses (again) at University. That God clearly directs her path and for extra part time work as she waits for Semester two to commence. Please pray for favour for her as she applies for a grant for student exchange for international study through the university. Please also pray for favour as she gets her results accessed from UTS to Macquarie that she may receive accreditation for teh work she has done.

We are so thankful to God for the way He has carried us, for precious friends, for loving family, for new connections, for sustaining Sam's health. We know that the road ahead is still long but God's grace is incredible and in and through it all we see Him weave His purpose in our lives.

Sam Chapman

Please take the time to check in on Sam Chapman's blog in the side bar. Judy and I share such a precious relationship as we have journeyed alongside each other with our children and their battle with Leukaemia.

Sam was diagnosed with AML Leukaemia in October 2008, receiving a related transplant from his sister Olivia. Late last year Sam relapsed and had a second transplant, also from Liv's donation of stem cells.

Please continue to uphold Sam and his family as a second BMT is extremely rare and Sam is facing many challenges at the moment.

Olivia (who has become friends with our Emma) is studying for her HSC this year and I know the whole family would appreciate your prayers.

This week we stand together on Hebrews 4:12 that says: "The word of God speaks. It is alive and full of power, making it active, operative, energizing and effective; it is sharper than any two edge sword, penetrating to the dividing line of the breathe of life and immortal spirit and of joints and marrow, of the deepest parts of our nature, exposing and shifting and analysing and judging the very thoughts of our hearts." and also

in John 16:32-33 'Be of good cheer, take courage and be confident, undaunted. I have overcome the world. I have deprived it of its power to harm you and conquered it for you."

Thankyou for standing with us on this very long road to healing

New Post www.girlonaswing.wordpress.org "Dandelions"

30th March Update

2010-04-01T19:47:00.002+11:00

Sam's bone results aren't so good. To start with she will be taking calcium and vitamin D tablets and she has to see a specialist to deternine if she needs something else. This is a result of a year on prednisone and chemotherapy and full body irradiation.

Her toes are giving her much grief and she has to see the podiatrist every second or third day at the moment and she can't wear shoes so its very tricky in the rain. Her toes throb and it seems her nails aren't growing properly and when they grew they cut into her very fragile skin and its just a vicious circle. seems like a small thing but its actually huge. You'd be amazed how many times a day she knocks her toes. Rusty just stepped on them and she's crying in sheer pain.

Sam's kidney and liver tests are good this week

We are attempting again to lower her prednisone dose. Please pray that her body begins to produce its own. Its vital we get her off this drug but there can be withdrawel symptoms which is scary and last time we tried it completely flared up her liver. So we need a miracle really. We need people to really pray that she gets off this drug successfully so there is no further damage to her bones.

Het thyroid drug has been increased. Her body finally recognises that she has no thyroid and so it dropped down significantly and the specialist rang me at 7.30 pm on Friday night very worried about Sam, asking me did she feel sick because the blood reults were so low. Under active now. Pray we get the dose right because all the side effects of adjusting drugs are so hard to deal with. Low thyroid function leads to extreme tiredness and depression. She has so much to fight every day.

We have been told today too that se needs to have mammograms when she turns 30 (seems years away but actually only 8) and we need to pray that she has no secondary cancers (like breast cancer) which is most common after a BMT.

We could be so crippled with fear. But need to remember that God calls us to live each day and he will clothe us with all we need,

So please keep rallying the prayerers. This isn't over yet by any means

However we know that God is faithful and He will spread HIs grace over us to carry us.

Clare

New post "Sing" on www.girlonaswing.wordpress.com

TUESDAY 23rd MARCH

2010-03-22T20:09:00.002+11:00

TUES 23rd MARCH is Sam Froggatt's birthday.
Let's join in prayers to our mighty God for her full recovery as He maps out the beautiful path before her...that He tenderly leads her Psalm 23 style.

Let us praise our magnificent God for all He has done thus far.

Leave her a message via the 'comments' http://aplacetogetlost.wordpress.com/

XXXX

Thursday 4th March

2010-03-06T07:36:00.001+11:00

A good day at St Vincent's on Thursday.

Sam's liver is responding well to the increasing of the prednisone dose and the 'ursofalk' medication and the doubling of her 'cellcept' dose. She was well enough yesterday to forgo the 3 hour infusion. It is still complicated though.

Sam has been on prednisone for over a year and it is a drug that damages the bones through prolonged use. This combined with complete body irradiation is a concern to Dr Moore. We need to pray PLEASE that her bones are miraculously strong. I have prayed Proverbs over Sam since the beginning of the diagnosis last year. "Do not be wise in your own eyes; fear the Lord and shun evil. This will bring health to your body and nourishment to your bones." (Proverbs 2?)

I am booking a bone scan to be performed in 3 weeks time, this will look for any signs of oesteoporosis.

In addition to this Sam has suffered from ingrown toenails since her ballet days on point shoes and these have returned with avengence since the BMT. Our lovely friend and paeditrist has been looking after Sam but it is tricky in her immunosuppressed state. Unfortunately the 'wart virus' has found an open wound and Sam has a horrendous wart where the ingrown toe nail was. It is most uncomfortable and again limits what she can wear on her already fragile feet. Fragile from GVHD of the skin and the risk of sun exposure. It is complicated on so many levels.

Sam was so cheerful about not having the infusion yesterday. We stopped at our favourite Darlinghurst Cafe for a late lunch at 2.30 only to receive a call from the doctor to come back to have the wart removed. It is sore and black now and will need treating a few times before it goes completely.

We are trying to reduce the prednisone again - VERY SLOWLY this time by 5MG per fortnight. PLEASE PRAY that Sam's body is able to produce what it needs for this to be successful. That her liver will not flare up again as a result of this. Her face is even more swollen than usual; not only in her chin, jaw and neck line but also around her eyes and eyelids as well. She feels terrible and uncomfortable. If she can successfully be weaned off the prednisone her face will return to normal about 6 weeks after the dose is reduced to 0. That could take 2 months before she is off it completely and then 6 weeks from then.

It is a long exhausting journey. It was 6 months ago now since the transplant and even though Sam exhibits tremendous strength of character, none of this is easy.

Uni is great. Sam is enjoying her subjects but she has two assignments due next week and is overwhelmed to say the least. I may call in my fellow tecahers to help me to help her answer the question.

Thanks to every one who is praying still and the staff at school, particularly the people I work with directly are the most amazing and supportive team, I could just cry! In fact I do cry! All the time. Happy or sad. Nearly lost it completely with my class the other day when I read them "John Brown, Rose and the midnight cat."

I'm hopeless. And grateful....so grateful for a loving community of friends and a MASSIVE GOD who hears me when I pray.

New Post "Tears" www.girlonaswing.wordpress.com

SUNDAY 28th FEBRUARY

2010-02-28T21:58:00.002+11:00

UPDATE from CLARE:

TUES:
St Vincents at 4:00pm for blood tests and then 4:45pm to see the surgeon to check the progress since thyroid surgery.

THURS: Big Afternoon-
Sam has a 1:15pm appointment with Dr John Moore and we will be looking at the liver results and working out any drugs adjustments. Sam then has a three hour anti- bodies infusion.

PLEASE PRAY:
~ for Sam's liver to be restored
~ her thyroid levels to be corrected perfectly
~ for God's healing hands as we perhaps try again to reduce the anti-rejection drugs.
~ protection and health as Sam returns to Uni. (Especially against all the flus that are around.)
Thanks Clare

LASTEST BLOG: 'Hidden'
"Have you ever felt invisible?"
Read more at www.girlonaswing.wordpress.com

SUNDAY 21st February

2010-02-21T21:05:00.004+11:00

CLARE'S NEW BLOG...to do lists...
www.girlonaswing.wordpress.com

WED 17th FEB ~ PLEASE PRAY for SAM

2010-02-17T11:37:00.002+11:00

UPDATE FROM CLARE:
Could you please pray and pass this on to others too..

Sam liver tests yesterday showed that she has not coped with the reduction of prednisone and it's being increased 5 x back to 25mg as well as other immunosuppressants being doubled.

She has still got graft vs host disease in the liver and this is not a result we want at all.

The drugs are controlling the disease but have so many side effects in and of themself.

Please pray Gods hand of miraculous healing on her life and for her liver particularly.

These past few weeks have been incredibly hard for Sam

Also her thyroxicin has been stopped again and will be re started Friday at a lower dose. This is very overwhelming for us.

Please pray.

MONDAY 15th FEB

2010-02-15T19:58:00.002+11:00

PLEASE PRAY...
for Clare and Sam tomorrow. Back at the hospital in arvo and Clare has to hot tail it back for Parent Info Night. Please pray for traffic, timing and breakthru for Sam.

CLARE'S BLOG: Spring...
"The truth about suffering is that through sickness you discover delightful intimacy with God." (want to read more www.girlonaswing.wordpress.com)

SUNDAY 14th FEBRUARY

2010-02-14T22:01:00.001+11:00

UPDATE for your PRAYERS:
Endocrine overdosed Sam on thyroxcin and her resting pulse has been 90.
She lost a kilo in 4 days and has severe tremors in her hands.
We took her off the drug for the weekend and are halving it tomorrow.
Very hectic for Sam.
Her thyroid hormones are double the normal without having a thyroid.

Please pray that this gets worked out and that the doctors have wisdom with all the drugs they need to taper.

She is extremely frustrated as all this continues to drag out.

Big day Tuesday. Appointment at St Vincents at 4:00pm then straight to Parent Night for me.

XClare

TUESDAY 9th FEBRUARY

2010-02-09T19:12:00.002+11:00

PRAISE REPORT

It has been quite tricky getting Sam into her course.
Apparantly somehow we (Actually I mean Sam~ do feel joined at the hip but it was her who was at Uni, not me)were no longer enrolled in Uni.

Not sure what went wrong but it became quite stressful as she thought she had the dates all correct and every time she tried to log in it didn't work etc. So yesterday she went to uni to sort it out and went from one department to another only to come home still confounded.
I got home from work and helped her draft an email to admissions. They rang an hour later, gave special consideration to her case and gave her an appointment for today.

So weary though she was, she headed back (with her wonderful Dad, who drove her) and she has been accepted. A last glitch this afternoon, a follow-up email and DAH...DAH - she is a student again!!!! Studying Primary Education Part Time.
VERY EXCITED!

SUNDAY 7th FEBRUARY

2010-02-07T20:48:00.003+11:00

PLEASE PRAY
~ Wisdom for Dr Moore as they wean Sam off her medications
~ Please pray for no side effects
~ Sam grows stronger and continues to put on weight
~ Please pray that these many drugs have not damaged her body.
~ Courage for Sam and Clare

UPDATE from CLARE:
Thursday 4th February was a BIG DAY.

Sam had an appointment at St Vincents for Intagam which is a three hour infusion of anti-bodies to help her body fight infection while she is immuno-suppressed.
The hard thing for her was that I couldn't go. The hard thing for me was that I couldn't go.

Reid dropped her off and my Mum did the three hour trip by public transport from Erina to attend. I must have phoned Mm about three times and sent a long email to summarise all the things she needed to do, questions to ask, scripts to ask for, results to check up on etc. Mum was a nurse before retiring so I trusted her to the job better than Reid. No offense to Reid but he is better at the BIG PICTURE than the micro detail.

Dr Moore is happy with her progress but confirmed in my follow up phone call (actually there were two) that he was pleased my Mum had attended because Sam was clearly quite fuzzy in her head (a side effect from coming off prednisone). We are continuing to wean her off prednisone despite the fact that her withdrawal symptoms are hard to deal with. This drug is being tapered by 5 MG per week and leaves her with leg cramps, fuzzy thoughts, shaking hands and aching bones. All these are documented as within normal range though obviously not pleasant for Sam. She has been on extremely high doses for a very long period, once as high as 100MG which is huge for her tiny frame. Now she has gone to 10 MG and has all the side effects to deal with but unfortunately that is all we can do...go cold turkey. Soon we will taper the cyclosporin immuno-suppressant, then the cellcept and so on, slowly and wisely at the doctors discretion.

One of her blood results showed that she is going to be ready to go on a gentler anti-fungal drug in about a month as well. She will be needing bone scans etc in coming months and then in about a year she will be having all her immunisation needles that she had as a baby again.

Its a long road ahead and sometimes my courage fails me.

Tomorrow she heads in to Macquarie Uni to clarify the best way to move forward with her study.Thankfully our friend Kate Highfield,who works in education at Macquarie,has been an advocate for Sam and has been a constant blessing to me as she helps advise us on enrolment options and who to talk to. Again I feel sad to not be able to join her as I did last week when Emma went to enrol. It's hard missing these milestones but the joy of working, earning money and being back on the team of incredible staff at school offers a freedom of its own. The children are bringing me such joy, although I feel asleep many times over the weekend (even in the Grand Theatre at Invictus, whoops)

This Thursday Sam has an appointment with the Endocrine registrar and then the following Tuesday we see Dr Moore again.

Sam is working hard to fill her days, getting to Pilates, setting herself writing goals and catching up with friends. Of course she still requires a daily nap.

I am very grateful for all the people who continue to pray and agree with us that cancer is behind us and only recovery in front of us. NO RELAPSE.

Thank you Lord.

THURSDAY 28th JANUARY~ ONE YEAR ANNIVERSARY

2010-01-27T22:38:00.003+11:00

SAM... (aplacetogetlost.wordpress.com)
Tomorrow marks the anniversary of my leukaemia diagnosis. My life has changed in ways I can’t even write about. Tomorrow help me to celebrate a year of trial, strength, endurance, patience, understanding and acceptance.

CLARE...(girlonaswing.wordpress.com)
I know He is taking the broken pieces of our lives and creating something beautiful.

EMMA...(runningwithballoons.wordpress.com)
So as a diamond reflects the light; so as the crucible refines the silver to reflect the silversmith; may I reflect the father. I do not want to become dried and cracked like broken pottery, but on the Potter’s wheel, a moulded and and in-progress jar of clay.

UPDATE from MONDAY 26th...
Dr John Moore is so pleased with Sam and her transplant results. Liver and everything good. He has begun to taper the prednisone and if that goes ok he'll start tapering immunosuppressants. Her skin, her emotions etc he all puts in the realm of normal. He expects that in 6 weeks she will feel significantly better.
It's wonderful and miraculous and we have much to thank God for.

CONTINUED PRAYERS...
~ Sam as she processes all she's been through and where God is leading her
(4th Feb- A big day for her. She needs antibodies, intagam a 3 hour infusion from 12:00pm and then she sees John and then Dr Bova the surgeon.)
~ Clare as she returns to full-time work
~ Reid for God to inject his business with success
~ Emma as she returns to Uni
~ Jack as he starts Year 10 at Northern Beaches Christian School
~ Rusty being such a Wonderdog!

FRI 15th JAN

2010-01-15T18:22:00.002+11:00

EMAIL from CLARE

Sam out of hospital and getting to go to MyGen Conference tonight!

NEXT WEEK:

TUESDAY- St Vincents- blood tests for thyroid,haemotology, calcium and thyroid levels to know when to introduce thyroxin drug.

WEDNESDAY- Dr Ron Bova (throat and neck surgeon) at 12 for post operative check up.

THURSDAY- Dr John Moore in haemotology- check up and discuss whether any of her immunosuppressant drugs can be reduced.
(Apparantly this needs to happen very carefully and gradually to avoid relapse. Please pray for wisdom for Dr Moore and continued health and well being for Sam.)

from THURS 14th JAN ~UPDATED

2010-01-15T07:46:00.001+11:00

CLARE at 9:00am
Rejoicing over Sam's blood results but not sure she wants to keep the handbag they've installed. MA 15+ (see photo)

SAM at 10:00am
Needs of hosp banana 2 keep me fat, nailpolish 4 sumthn nice, bible 2 remind me y im here. (see photo)

CLARE at 3:30pm
Why do the words, "Thanks for coming today, Mum. We had so much fun," make me want to cry?

SAM at 8:30pm
I feel freeee

CLARE at 9:30pm
Calcium levels even better on latest tests. How blessed are we!

PLEASE CONTINUE TO PRAY for SAM...
~ for her skin
~ against graft vs host
~ her full recovery
~ her liver will continue to improve

READ EMMA'S NEW BLOG:
www.runningwithballoons.wordpress.com

READ CLARE'S LATEST BLOG 'Ocean': www.girlonaswing.wordpress.com

WED 13th January

2010-01-13T21:34:00.003+11:00

TWITTER from SAM~ 5:00am
Off to hospital. Get my thyroid out so I can be active again. Ah too early. Keep me in your prayers this week - strength joy appetite.

TWITTER from CLARE~ 8:30am
Oh the agony of waiting. You phone at the time they suggest and they say another 2 hrs. Oh...trying to sink myself in Essential Rumi & tea.

TWITTER from CLARE~ 1:30pm
Sam's been in recovery since 11:00, can't see her till she goes on ward but her allocated bed occupied by patient who might go home later today

TWITTER from CLARE~ 2:00pm
She's here! Chatting like a sanguine, asking 4 food, wondering why her voice is croaky? Used my supermum skills 2 get bed by window own room

TWITTER from CLARE~ 3:30pm
THANKYOU JESUS and all who've stood beside us. 28th of January marks the end of a year of sickness for Sam.

TWITTER from CLARE~ 7:30pm
More good news! Calcium levels 2.32, within normal range. All doctors happy. But mostly me. If you read the blog u knew I was concerned.

UPDATE FOR CONTINUED PRAYERS~ 8:30pm
Sam is 'drug happy' but everything so far points to a very successful op.
We still need to see the liver settle and may do biopsy.
Hand and feet are extremely heat sensitive.
Keen to see TOTAL miracle but so grateful for what God has already done.
(Clare is back at the hospital at 9:00am tomorrow.)

WEDNESDAY 13th January

2010-01-13T00:41:00.003+11:00

PLEASE PRAY TODAY~
Protection over Sam as she has thyroid op at 8:00am

READ CLARE'S LATEST BLOG~
Stitches and Thread, www.girlonaswing.wordpress.com
Please leave a comment for her- even if it's just to say "Hi"

MONDAY 11th JANUARY

2010-01-11T09:41:00.002+11:00

WHOEVER TRUSTS IN THE LORD IS KEPT SAFE.
(PROVERBS 29:25)

Please pray...
* Mon 11th~ seeing anesthetist in prep for thyroid op on Wed
* Wed 13th~ 8:00am Thyroid Operation
* Sam's liver functions are low

Thank God for...
* great specialists, doctors and nurses
* peace over Sam and the family
* Sam being the first operation scheduled on Wed
* protection

HE WILL COVER YOU WITH HIS FEATHERS, AND UNDER HIS WINGS YOU WILL FIND REFUGE.
(PSALM 91:4)

Friday 8th January

2010-01-08T10:04:00.004+11:00

We had an early start at St Vincent's yesterday to meet with the surgeon who will be performing Sam's operation to remove the thyroid.
He has been discussing her case with Dr Samaras and is surprized to hear of the first ever case of post transplant Thyroiditis, certainly in Australia. There are many of 'unknowns' and the doctors are intrigued to examine the thyroid when it is removed to see if it contains male cells from Sam's donor and to dissect it to see what else they can discover about how Sam's disease was affected by the Bone Marrow Transplant.

There are some risks in having the thyroid removed. Please pray that these do not occur for Sam.
1. Difficulty breathing due to swelling around the throat (settles after a few days)
2. Bleeding caused by injury to a blood vessel during surgery. (may required 2nd operation)
3. Injury to the laryngeal nerve that controls the vocal cords. 1 in every 100 patients having thyroid surgery have injury to the laryngeal nerve. Such injury may be temporary or permanent and may affect the voice.
4. The parathyroid glands can be damaged during surgery. Daily blood tests will check calcium levels and calcium supplements will be given if needed. 1 in 100 patients will need calcium tablets for life after thyroid surgery.
5. A rare complication called 'thyroid storm' occurs when too much thyroid hormone is released into the patients body during surgery. This will make the patient feel unwell, have a fast heartbeat, tremors and high temperatures. Medications is given to correct this.
6. After the thyroidectomy, Sam will need to take thyroid hormone replacement tablets for life. Regular blood tests will be conducted to ascertain the correct dose.

On top of these thyroid specific complications there are always other risks to having surgery. Wound infection is a main concern and in Sam's immunosuppressed state this is of major concern. We are praying that she will be able to get a private room in hospital to minimise contact with other patients.

Please pray God's peace over Sam and myself as going back to hospital after nearly a whole year in hospital returning again causes us both some level of anxiety.

I am thankful that the operation has been postponed until 8am Wednesday 13th because this means Sam will have the care of the midweek nurses who are usually better equipped than the casual weekend staff. I am also thankful that Dr Samaras will be back from vacation and although Dr Moore is away he will be checking in on Sam's well being and available to advise.

Please continue to pray also for Sam's liver function tests. After the BMT her liver functions were great relatively quickly but they have deteriorated in recent weeks. We had thought the the thyroid drug 'neo-mercazole' was responsible for this but even after being off this drug for 1 week the results have continued to get worse.

Dr Moore is watching her liver tests closely. We need to pray that this is simply drug related and not more Graft versus Host Disease. This long after the transplant GVHD is far more serious and complicated. Please pray her liver miraculously recovers and that no more complications occur.

Once again we move forward with all the recommendations of a brilliant team of doctors and medical staff. We act on their advise and pray specifically against the risks and side effects.

God continues to show himself faithful. We put all our trust in Him. His mercies are new every morning.

His word to me today is "the Lord has created a new thing in the land...I will fully satisfy the weary soul and replenish every languishing and sorrowful person." Like Jeremiah my response is " I awoke and looked and my trancelike sleep was sweet in the assurance it gave to me."

Time and again I am overwhelmed by God's grace in this season (or season's in our case). Surely He speaks to me, reassuring me that He is close.

On the 28th of January it will be 12 months since Sam was diagnosed with Leukaemia. We are complete faith that all will be well by that date. I am returning to full time work. Sam is believing she will also be well enough to return to study.

Thankyou for uniting your faith with ours for miracles.
Clare

You can read more on www.girlonaswing.wordpress.com

WED 30th DEC 7:00pm UPDATE

2009-12-30T20:29:00.000+11:00

Big day

Dr Katherine Samaras is an amazing and beautiful doctor. Passionate
about her work and so pastoral. She wants the thyroid out asap and has
been calling endocrine guru in Melbourne to ascertain best options.

Sam's liver isn't good and today her kidney tests aren't either. If
the kidney doesn't improve she'll need to be hospitalized to flush
them. We need to pray she stays very well between now and the
operation which could be as early as next Friday the 8th to remove her
thyroid.

To keep a check on things we have more blood tests tomorrow as early
as we can cause the lab is slow at this time of year.

We had lots of waiting today again leaving hospital 5:15, our appt was
for 2. I'll be so grateful for a normal life but I am grateful that we
have such amazingly dedicated doctors who wait up late to check blood
results. Last night Dr Samarus phoned at 10pm to get me to alter drugs
today and again at 630 tonight the haemotologist phoned to get me to
add extra tests to blood forms and change a few more drugs.

Please continue to pray for our friends the Chapmans. Matthew
Greenwood admitted that Sam's results at rnsh today were a miracle. In
all our time under his care he constany reitterated that there are no
miracles! So the statement is a miracle. Pray that Sam remains strong,
against recurring headaches and neck pain. He has felt well since
christmas morning. Praise God.

I'm so thankful to everyone who continues to pray and uphold us
throughout this festive season. Feeling a stir in my heart to write an
update on girl on a swing. Maybe tmrw.

God is so faithful, speaking to us everyday through ordinary moments,
extraordinary doctors and His unfailing word. Indeed when we are weak,
He is strong.

Much love Clare

P.S. Forgot to mention that the thyroid levels are back up to 48 even on
the dreaded neo mercazole and sam is one on. One thousand to have the
adverse liver effects.
Thankfully her White Blood Count is still good.

WED 30th DEC

2009-12-30T14:39:00.002+11:00

Please pray as Clare and Sam go to St Vincents today to discuss whether Sam's thyroid should be removed. Please pray for wisdom as they decide which actions to take and the choice of drugs she should be on.
THANKS!

TUES 22nd DECEMBER

2009-12-22T17:18:00.001+11:00

EMAIL from CLARE
Please pray:
SAMs liver tests are worse again than last week
Her thyroid has also climbed back up to 38

She is extremely fragile, shaky, wobbly on her feet and forgetful. Her thoughts are erratic.

Thanks to all the faithful ppl who continue to prayer for sam full recovery .
X Clare

MONDAY 21st DEC 3:00pm

2009-12-21T14:55:00.002+11:00

Hi Guys
Could you please pray.
Poor Jack and Clare have had their bank account cards skimmed and Jack has had all his money taken and someone in Beecroft has taken $1000 out of Clare's account. Emma and Jack's cards have both been eaten by the teller machine so they now had to drive to Maroochydore to sort it all out. CRAZY stuff.
XXXX

MOBILE BLOOD SERVICE in DEE WHY

2009-12-19T15:55:00.002+11:00

MON to WED~ 2:00-7:00pm
THURS~ 10:00-3:00pm
until 31st Dec

LEVEL 3, 932 Pittwater Rd Dee Why
PH: 13 14 95

SATURDAY 19th DECEMBER

2009-12-19T00:11:00.002+11:00

PLEASE PRAY:
* Thanks to God for their break away- that He can use it as a time to speak into their lives-that He will speak loudly and clearly
* Thanks to God that Sam stopped vomiting today
* Strength for Sam in every way- mental, physical, spiritual, emotional
* God's protection over her blood, liver (increased folic acid), thyroid
* Strength for Clare and the family

UPDATE THURS 17th DEC from CLARE from NOOSA
These are challenging times! I'm not sure why I thought this would be
easier than it is. That somehow leaving Sydney would mean leaving
sickness, sadness and insanity behind. It followed us. So did fevers,
vomiting and a new anxiety. A fear that this could continue for a very
long time.

Somehow the flights got mixed up, our accommodation wrongly booked (?)
and we've had to move three times. The room we are in now is decidedly
brown but it overlooks the pool and has a table large enough for the
jigsaw puzzle.

I'm not totally sure how to holiday with sickness so it's taken this
long to find our rhythm. We are learning to holiday in shifts.
Occasionally me with Jack, Reid with Em and Jack, Reid with Jack, Reid
with Em, me with Em. Reid with Luke and Pete, me with Rozzi and
Silvia. All together doesn't work and Sam can barely leave the couch or
the bed.

She is all sadness and the weight of her silent depression rests heavy
on my heart causing me to be emotional. Angry sometimes, or fearful,
or convulsive sobs. It's strange this journey and long.

Jack and Em have found fun with the other teens but they tiptoe guilty
back to the flat conscious this is no holiday for Sam. They don't know
what to say so silence hangs from the ceilings and we try to find
words to express appreciation for the 'holiday'.

The blood tests were difficult, the paperwork for some reason
confusing and even the Sydney doctors have found it frustrating
getting results across the border, in spite of fax, email and all the
technology of the current age it has been far from straight forward
accessing the results.

Her thyroid levels are up to 34.5 today. Not a bad result but not as
exciting as the result in the 20s. And tomorrow I have to phone
haematology to find the full blood count. The lab would not give these
results to the endocrinologist. Please pray her WBC still ok.

Today Sam didn't get out of bed until 2:00pm. I'm not sure how much I
should be concerned. Is her thyroid settling now so she can sleep, or
is she really unwell.

I don't know. And I don't know why I'm so worried when all year I have
been brave and strong.

Maybe I'm finally crumbling from the weight of it all.

UPDATE FRI 18th DEC from NOOSA
I spoke to Dr Moore today. He asked if Sam was extremely tired?
Yes...she slept all day yesterday! He says there's activity in her
baby red blood cells that indicate she's working hard to change blood
types again. So she needs folic acid and prayer cause her liver tests
are not as good so we will address this when we get back. It could be
because of the neo mercazole drug that she's now on for her thyroid.
It's working well for her thyroid but the liver side effect is another
one that can happen. Along with the WBC side effect which is so far so
good.

Dr Moore is concerned that Sam has been vomiting all week but it
stopped today. Key seems to be to keep things calm...not as easy as it
sounds.

SATURDAY 12th DECEMBER ~ DAY +100!!!! YEAH

2009-12-12T20:14:00.002+11:00

SMS from CLARE 12:05pm
Leaving St Vincents now with 3 prescriptions in case she needs them!
Need to start new antibiotics if fever goes to 38.5 again.
Flight leaves at 2:00pm.

SMS from CLARE 3:23pm
Haven't left Sydney yet. Plane trouble. Just had to disembark and wait for new planr. Pray for Sam she's exhausted.

SMS from CLARE 5:30pm
We are in Brisbane. Now we drive to Noosa. Woo hoo. (approx 2 hr drive)

FRIDAY 11th DECEMBER ~DAY +99

2009-12-11T19:36:00.003+11:00

SMS from CLARE FRIDAY NIGHT
UPDATE:
fevers over 39, coughing, vomiting. Going for chest Xray at st
vincents at 10am on way to airport.

PRAISES:
thyroid result 28, I've been praying it would be in 20s. 20
is normal. Last test was 47 and frightening the doctors.
Now we need to make sure she doesn't have a chest infection. Never a dull moment but very thankful about thyroid. Reducing the horrible nightmare drug slowly. 3 days after Xmas she won't even be on it.
Thank the Lord

THURSDAY 10th DECEMBER ~ DAY +98 ~ HAPPY BDAY CLARE!

2009-12-10T07:07:00.004+11:00

HAPPY BIRTHDAY to YOU CLARE!!!
We really have no words to say how in awe of you we are.
You have inspired us to step up, be more honest and reach out and see the power of our Mighty God.
Have a fabulous day

FOR SAM...
we continue to pray to hold hands with her for COMPLETE healing. God soak her in your love. Restore her thryoid. Do your incredible work of healing. Thank you, Father.

MONDAY 7th DECEMBER ~ DAY +95

2009-12-07T11:53:00.000+11:00

WOW!!!!
This is a very significant week.
SAT 12th DEC marks DAY +100 since the transplant- God is magnificent!
This means the high risk days are over. Sam is Leukaemia free.

It will take time for Sam's body to continue to strengthen and recover as her immune system improves. Her body continues to fighting to get her thyroid sorted. Our God finds a way.

THANK GOD- for Sam being +100 days on Saturday- YEAH!

PLEASE PRAY-
* PRAY for Sam's hospital visit today- Message from Clare on Twitter...
"Driving around Kings Cross looking 4 a park, while the nurses search 4 a vein in sam's arm 4 todays infusion. Ready 4 a miracle this week."
Pray for the doctors.

* PRAY there'll be real breakthroughs in prayer this week

* PRAY for Clare's Bday on Thursday

* PRAY for the Froggatt's holiday to Noosa on Sat. Sam will need lots of rest.

MONDAY 7th DECEMBER ~ DAY +

2009-12-07T11:21:00.002+11:00

FRIDAY 4th DECEMBER~ DAY +92

2009-12-04T09:35:00.003+11:00

SMS 9:30am PLEASE PRAY:
Fevers, vomiting, diarrhoea...Sam not keen to do hospital run to hospital. Not much point admitting her over weekend with skeleton weekend staff etc. Feel like its getting worse before it gets better.

DEC 3rd UPDATE 4:30pm

2009-12-03T16:21:00.002+11:00

Doctors were concerned about Sam today and it looked like Sam might be admitted at one stage.
On their way home now with new drug.
PRAY PRAY PRAY
it doesn't lower her white blood count. Serious infection risk.
Starting twice weekly blood tests to check WBC even when they go to Noosa at the end of next week.

THURS 3rd DECEMBER- DAY +92

2009-12-03T07:49:00.001+11:00

Sam had a terrible day yesterday. The fevers just keep coming and she had no strength to get out of bed til 12:30pm.

I keep ringing Endocrine and then leaving messages for Dr Moore. To be honest no one seems to know why she has fevers unless there is an infection hiding in her body. Endocrine say that thyroids don't cause fevers, haemotology say they do. So no one agrees and I am begging them for a solution. Problem seems that there is not one. I suggested perhaps the fever came as a result of us reducing prednisone so they may double it again but THIS IS NOT A LONG TERM SOLUTION. Prednisone is one of thsoe terrible drugs. They also add to her anxiety.

So we still need that miracle. Today marks 3 months since the day of transplant. I said to God last night: God you seem to work in threes. 3 days in the belly of the whale, 3 days waiting for Jesus resurrection etc etc they are every where So I said lord could this be the resurrection day.

We are due at St Vincents to see John Moore at 12:45pm then endocrine at 2:45pm, so we'll be waiting around a bit I'm sure. I don't mind waiting anymore...just give me an answer at heal my girl. that is how I feel.

So yesterday I wrote my first little engine that could blog.

Check out the blog www.littleenginethatcould.wordpress.com

TUES 1st DECEMBER- DAY +89

2009-12-01T22:01:00.003+11:00

SMS from CLARE 9:00pm
Sam home from St Vincents but no answers about fevers.
Could be the reduced prednisone dose.
Dr Moore trying to liase with endocrine to see about putting Sam on drug that may lower her white blood count.
All very risky.
Prefer a miracle.

NEW BLOG from CLARE...
When Jack was only 2, he came out from his bedroom fully dressed in his favourite clothes. See www.girlonaswing.wordpress.com

DID YOU KNOW CLARE'S BDAY is 10th DEC? 9 sleeps!

TUES 1st DECEMBER- DAY +89

2009-12-01T19:30:00.002+11:00

NEW BLOG from CLARE...
When Jack was only 2, he came out from his bedroom fully dressed in his favourite clothes.www.girlonaswing.wordpress.com

DID YOU KNOW CLARE'S BDAY is 10th DEC? 9 sleeps!

MONDAY 30th NOVEMBER- DAY +88

2009-11-30T13:03:00.003+11:00

PLEASE continue to pray for Sam.
Her fevers continue.
She is back at hospital this week for a check up.
Let's pray for major breakthroughs in her health this week.

PSALM 121
I lift my eyes to the hills-
where does my help come from?
My help comes from the Lord,
the Maker of Heaven and Earth.

2009-11-25T20:14:00.002+11:00

A big thankyou to all who banded together to pray over Sam's complete healing, in particualr that she would walk free of the side effects her thyroid is causing (let's also pray for her skin).

Sam has an endocrine appointment next week on the 3rd- our prayers are that the specialist will be able to report an improvement in Sam's levels. Her 100 days are over on the 8th of December and it would be amazing to have a triumphant shout that it is FINISHED!! completed, with no lingering side effects.

Thanks also for sending messages of faith and hope, these are precious beyond words.

Friday 20th

2009-11-20T14:25:00.001+11:00

We have so much to thank God for- the doctors are really pleased with her blood results and all things leukaemia related are really positive. During the grafting process, when potentially her liver, lungs and heart could have been adversely affected, Sam’s body coped well and there is no damage to these vital organs. Also we thank God that He truly was ever present in the Froggatt’s home.
It has been troubling me however that Sam’s thyroid has been so adversely affected as this is stopping her from physically being able to walk free in the complete healing we know is hers. While it sounds insignificant compared to leukaemia, her thyroid is really causing hugely impacting side effects. We are all united in wanting and believing for Sam to live as a 21 year old, but the impact of the thyroid has left her with a resting pulse of 120 (a doctor compared this to running on a treadmill for 10 days straight), breathless, nervous, anxious and robbed her of a sense of her true self. Her hands shake, she can’t write and has lost a significant amount of weight. Add this to the fact most transplant patients sleep for the year after their procedure and you get the picture that Sam is really very fragile. The doctors are playing around with drugs, but even so the recommended drugs have documented side effects of sleep interruption and disturbing dreams and shaking and so it goes on.

The doctors have shaken their heads and said they don’t know what to do. Thankfully, we do.

We know God will complete the work He has started in Sam and that when we unite in prayer, according to God’s will we can and do move mountains. So, can we again ask for us to band together in united prayer for Sam’s COMPLETE healing, where her thyroid will return to normal function and she is free to choose how to spend 2010- as a uni student.. working.. whatever is her delight.

We are marking Tuesday 24th as a day we could all pray in agreement for Sam’s complete healing. We are not thinking that we will all meet physically, but rather send a united voice on that day in prayer. If you wish, Rozzi will be in the C3 prayer chapel at 7 am and again at C3 before the prayer meeting at 6 should you wish to join her. Texting Clare and Sam your prayer support is welcome as are tweets, Facebook comments, smoke signals and courier pigeon messages.

Feel free to send this on to anyone you know who has been praying,
Love Rozzi and Bronte

Thursday 19th November

2009-11-19T07:10:00.002+11:00

2 Corinthians 2:14
But thanks be to God, Who in Christ always leads us in triumph [as trophies of Christ's victory] and through us spreads and makes evident the fragrance of the knowledge of God everywhere

Dr Moore is pleased with the results and progress of the Bone Marrow Transplant.
He is eager to reduce Sam's prednisone dose as soon as the Endocrine Specialists agree that this is safe for her thyroid function.

He has given Sam 2 weeks off visits to Haemotology but says he will be in close contact with the thyroid specialists.

Today we are heading back in to see what is the latest news on blood results to do with the thyroid.

PLEASE PRAY that all the side effects leave Sam's body and that she can 'feel' normal again.

She is agitated and emotional but working VERY HARD to control her thoughts and responses to a very fast heart beat.

If you want to read more about how Sam's thyroid makes her feel read:
www.girlonaswing.wordpress.com

Monday 16th November Day 74

2009-11-16T07:00:00.006+11:00

Please Pray

Sam has another big day at St Vincents in outpatients today.
She will need to have a canula and then 3 hours worth of infusion. This is a drug known as intagam which restores the liver from all the chemotherapy damage.
Sam also requires blood tests for many post transplant check-ups including thyroid function tests for the thyroiditis that developed since the transplant.
Blood tests cause Sam a great deal of anxiety as her veins are tiny and all association with them brings back the horrific reminders of all the times the vein has tissued and they have had to try again.
Pray for peace as we travel in this heat, try to locate a park and for all the hours we have to wait (not only for the infusion but for our turn to be seen).
Pray for all the symptoms of the thyroiditis: fast heart rate, hand tremors, weight loss, anxiety to subside and for the miracle of her complete wholeness. Please pray that Sam's puts on weight.
Pray that her period returns and that she may be one of the 10% of transplant patients NOT rendered infertile.

Clare writes about thyroiditis and its effects (Click on Clare's blog in sidebar)

"Life is like paper
Pastel coloured
Bunting, streamers and serviettes
The gelato memory of childhood
When giggles turned to laughter
And nonsense words."

Want to read more? Go to : http://girlonaswing.wordpress.com

WED 11th NOV ~ DAY +69

2009-11-11T08:16:00.002+11:00

UPDATE on SAM
Although in remission Sam still in battle with shaking, high pulse etc etc.
Still needing to take a large cocktail of drugs.
Life is far from 'normal' for her.
Please continue to battle for her in prayer.

CLARE'S NETWORK NIGHT
Last night was a wonderful night...
Very special- sorry if you missed it.
Of course Clare spoke about...ONIONS!?!
You can find her notes at...
www.girlonaswing.wordpress.com

SUNDAY 8th NOV ~DAY +66

2009-11-08T21:52:00.002+11:00

UPDATE from CLARE 9:30pm
Sam has had an upset tummy all weekend. This is an ongoing problem since the transplant. She's either constipated or the opposite so is on regular medication but it would be so good if she could just be normal.

She's eating really healthy food and doing all she can to be healthy. She went for a little walk up Hill St near us and has strained her back. Only went 200m and had to turn back.

Sam is also having headaches which are painful.

And a fever again yesterday.

Please pray also over her sleep. The increased propanalol dose for thyroid is really messing with her sleep.

She's quite fatigued but trying hard to push through.

She enjoyed lunch with Tammy and James on Saturday and joined pre-service celebrations for Myia's dedication this afternoon with Juzzy and Tahlie. She had such a special time and is in love with that baby.

Pray that she is well and relaxed while I work tmrw.

Pray that her heartrate is normal. That the tremors in her hands stop and that her thoughts are in line with Gods word. So hard on all these drugs.

Thankful for hair growing back.

THURSDAY 5th NOVEMBER ~ DAY 63

2009-11-05T21:33:00.002+11:00

UPDATE from TODAY 9:30pm
Clare and Sam saw specialist at St Vincents today.
He believes that the thyroid problems she had at Nth Shore before transplant were fixed pre-BMT and that what she may be suffering from now is post-BMT thryroiditis.
They are changing medication levels around to see if this helps.
Her responses all appear that she may have Graves Disease but none of the tests confirm she does.
Her resting heart rate can be as high as 130 (they want to get it down to 80) and her hands are still shaky to the point of being unable to do anything. Her mind is racing and this causes big mood swings.
The specialist says thryroid difficulties are a very rare side effect. It may just get better by itself or could require an operation.
Please pray for God's healing in this area. He has been so faithful.
Sam is Leukaemia free (the specialists don't declare this until a patient passes the 5 year mark but there is MUCH to praise God for.)

CLARE'S NETWORK NIGHT next TUES NIGHT
On Tues 10th Nov the network of women Clare oversees is meeting at C3 church in the Art Lounge (opposite main entrance into church). If you would like to join us please let me know. Numbers are limited so just email me at laptop@premiumcork.com.au
Thanks, XXBronteXX

TUESDAY 3rd NOVEMBER ~ DAY +61

2009-11-03T21:34:00.002+11:00

UPDATE from CLARE 9:30pm
Praising God for MRD results that indicate remission for Sam.

Also high % of donor blood almost 99% so a good result already from transplant.

Please pray for wisdom for endocrine team who are negoitating how best to treat Sam for all the symptoms of thyroiditis. The most effective treatment would have severe side effects such as lowering her white blood cell count and making her neutropenic. Not possible for someone already immunsuppressed.

Sam is 44 kilos.
Very agitated, shaky and frail.
Everything she does requires great effort.
Her resting pulse is very high 96 today.

Also her digestion is all over the place.

Please pray that the thyroid would recover supernaturally
For renewed strength
Regular pulse rate
Weight gain

Poor darling tried to cut potatoes for dinner and write a thank you card but had no strength to complete task.

Seeing endocrine on Thursday at 4:30pm after a day of teaching for me.

Praising God for return of beautiful eyebrows, new scalp growth and eyelashes.

She's a beautiful girl.

Also pray for her arms to recover quickly from all the bruises. Little Sam looks like a junky!

Pray for restful sleep, renewed vision and full recovery.

Most exciting news: permission to book a holiday at end of 100 days.

Excited about my C3 Church Network meeting next Tues night

A LITTLE ADDED BIT FROM BRONTE:
Imagine my surprise when I drove up to Avoca today to take my Dad to the Dr (He badly hurt his back on Saturday and my Mum has Dementia and doesn't drive. Things have been tricky for them.) I pulled up in their driveway to see Clare's beautiful Mam and Dad on my parent's verandah having a chat with them! They had dropped by to let them know call if they needed help. It is the closest I have come to seeing angels. Clare has the most wonderful parents- like parents, like daughter. I feel so so spoilt. Thank you SO much John and Jo!

MONDAY 2nd NOVEMBER ~ DAY +60

2009-11-02T19:57:00.002+11:00

UPDATE from CLARE 2:30pm.
Sam is goodish.
Stiff neck from sleeping funny and a sore tummy.
Shaky hands but less so.
Voice a bit croaky- hoping its tiredness and not another thyroid prob.
TUES is blood tests and Dr Moore
THURS is endocrine at 4:30pm

WANT TO KNOW MORE?
Read www.girlonaswing.wordpress.com

SUNDAY 1st NOVEMBER~ DAY +59

2009-11-01T21:58:00.001+11:00

Sam was readmitted last Friday. It was sunny so she arrived in a lace and muslin dress with shoestring straps...

WANT TO READ MORE? ... 'Standing Still' www.girlonaswing.wordpress.com

THURS UPDATE

2009-10-29T17:10:00.003+11:00

4:00pm
Sam and Clare heading home after waiting all day to see the dr who never arrived.
pray for safety and peace over them.
xxxx

THURSDAY 29th OCT ~ DAY +56

2009-10-29T13:07:00.002+11:00

UPDATE from CLARE 12:30pm
Sam is being discharged today despite on going fevers.
She weighed in at 45kg yesterday (after an organic burger!)
Waiting for endochrine team to explain what's next.
Completed antibiotics so today we go home...sometime.

Psalm 65
To the Chief Musician. A Psalm of David. A song.

TO YOU belongs silence (the submissive wonder of reverence which bursts forth into praise) and praise is due and fitting to You, O God, in Zion; and to You shall the vow be performed.

O You Who hear prayer, to You shall all flesh come.

Iniquities and much varied guilt prevail against me; [yet] as for our transgressions, You forgive and purge them away [make atonement for them and cover them out of Your sight]!

Blessed (happy, fortunate, to be envied) is the woman whom You choose and cause to come near, that she may dwell in Your courts! We shall be satisfied with the goodness of Your house, Your holy temple.

By fearful and glorious things [that terrify the wicked but make the Godly sing praises] do You answer us in righteousness (rightness and justice), O God of our salvation, You Who are the confidence and hope of all the ends of the earth and of those far off on the seas;

Who by [Your] might have founded the mountains, being girded with power,

Who still the roaring of the seas, the roaring of their waves, and the tumult of the peoples,

So that those who dwell in earth's farthest parts are afraid of [nature's] signs of Your presence. You make the places where morning and evening have birth to shout for joy.

You visit the earth and saturate it with water; You greatly enrich it; the river of God is full of water; You provide them with grain when You have so prepared the earth.

You water the field's furrows abundantly, You settle the ridges of it; You make the soil soft with showers, blessing the sprouting of its vegetation.

You crown the year with Your bounty and goodness, and the tracks of Your [chariot wheels] drip with fatness.

The [luxuriant] pastures in the uncultivated country drip [with moisture], and the hills gird themselves with joy.

The meadows are clothed with flocks, the valleys also are covered with grain; they shout for joy and sing together.

WEDNESDAY 28th OCTOBER~ DAY +55

2009-10-28T12:26:00.001+11:00

UPDATE from CLARE 12:00pm
Waiting for a ct scan with sam. Thyroid I think- they give her dye :( another needle

May be home tmrw.

Bone marrow clear so far waiting for mrd molecular residual disease from lab. Another week- believing it will clear
Also get confirmation as to whether she now has her donor blood and to what percentage. Weird.

TUESDAY 27th OCTOBER~ DAY +54

2009-10-27T19:36:00.001+11:00

URGENT UPDATE 7:30pm
Fever gone to 39.9
Pulse 130
Doing blood cultures again and ECG

UPDATE 6:00pm
Praises:
The lady opposite has only complained to her son today. Not the usual all day cross and crankys.

Sam had her last ( we hope) ever bone marrow biopsy

It was done with an anaesthetic , not the barbaric breathing method as at RNSH. So relieved. I honestly don't think my heart could take any more stress

Fevers less regular - could be the increases prednisone dose, or the increased propanalol dose or the IV antibiotic. They want to keep Sam a few more days to be safe.

Dr Barbara Withers brought in season one of Gossip Girls for us to watch making us feel quite loved

Nurse Georgie brought her fish recipes as a follow up from our chat yesterday about cooking fish. Another nice connection moment.

Sam had to have canula removed and is onto third one this visit. It's hard for them to find a vein. So they keep tissuing. So painful. Poor Sambo. She's very brave.

We missed the endochrine professor while having BMB so he'll be back tomorrow

Huge thankyous for meals, texts, twitters, blog comments, and now Facebook emails. I do feel very loved albeit tired.

Thanks Silvia for thinking of Jack and kidnapping him for family dinner at theirs.

Pray for perfect health including regular pulse rate, blood pressure, blood tests, thyroid activity etc.

Wisdom for all specialists.

And good sleep for me. I don't settle well with Sam in hospital

Weird how tired you get doing nothing!

MONDAY 26th OCTOBER~ DAY +53

2009-10-26T20:53:00.002+11:00

UPDATE from CLARE 8:30pm
Sam has no energy.
Only a fever this morning.
Her blood tests show she is low in protein and albumen.
The dietician wants her on supplements. Sam hates these.

We waited ALL Day for thyroid ultrasound. At 5:00pm the endochrine student came for Sam history. Here we go again! Then an endochrine registrar. Then tomorrow we might see the endochrine professor.

They may start treating her for Graves Disease since the beta blocker for thyroiditis doesn't seem to be getting it under control yet and it's been 4 mths. I haven't spoken about it much because of the Leukaemia and BTM were just too big and life threatening in comparison.

She's only 44 kilos now with a resting pulse of 120. So yes, this is serious too.
So we are praying for Gods mighty hand to move.

Tomorrow might be the day for the bone marrow biopsy but Dr John Moore had clinics in Griffith today and Dr Barbara Withers forgot to check. So Sam has to fast tmrw incase.

We were so bored today. No energy to do anything, too cold to go outside. A chronic whinger opposite Sam who just wants to die and fights with every doctor who wants her to have xrays and drugs etc saying I just want you to let me die. I should be in the hospice etc etc. not a good place to be. Sam feels like opening her curtain and saying shut up. Just get happy. But restrained herself.

Sam got her eyebrows back on the weekend. YEAH!

If you have any spare praying time it would be so great if Sam had her own room. We are unsure when we get to go home.

POWER in PRAISE

2009-10-25T22:08:00.003+11:00

Reading 'Power in Praise' by Merlin R Carothers (1972!) and added a first instalment of quotes from it in Bronte's Blog if you'd like a read- I so prefer the highlights of a book than the whole book sometimes.
Love to you, XXBronteXX

SUNDAY 25th OCT~ Day +52

2009-10-25T21:08:00.002+11:00

UPDATE from CLARE 9:00pm-
Sam had fevers at 7:30am and 3:30pm. When I phoned tonight her pulse rate had dropped from 120 to 80 so we are rejoicing!
Leaving home to visit her at St Vincents at 8:00am tomorrow so I'm there to speak to doctors.

CLARE'S NEW BLOG:
"Sam has never really been afraid of anything except for..."
want to read more?
www.girlonaswing.wordpress.com

SAT 24th UPDATE from CLARE~ 12:00pm

2009-10-24T12:20:00.002+11:00

Dr has just been.
Sam had fevers in night and now
More blood cultures sent to lab
Being hooked up to IV antibiotics soon
If these don't make a difference we have more reason to believe the problem IS the thyroid

To treat thyroid effectively she needs a drug that stops the thyroid from producing hormones. The reason the dr is not doing this is that the side effect is to reduce blood counts. Obviously this is complex for someone in Sam situation who needs her blood counts to be high. The endocrinologist hopes Sams body will stop producing thyroid hormones of it's own accord but it may take weeks.

If we can focus our prayers on the thyroid. Pray that the hormones only produce what is normal.

For her hands to stop shaking

Most importantly Pray against hidden infection in body that could be more serious than thyroid complications

Pray for peace over Sam as she gets yet another canula inserted

And for the stress related to bloods being taken constantly from her
tiny arms

Pray for the thyroid to be normal so she can gain weight, stop
shaking, stop fevering and start sleeping normally

Thankyou xxx

SAT 24th OCT ~ DAY + 51 DAYS

2009-10-24T08:26:00.003+11:00

UPDATE FROM FRI NIGHT:
Sam has been fever free since 9:30am this morning (FRIDAY).
Pulse is very high, she's exhausted, jittery. All signs point to thyroiditis. Apparantly they equate her condition with someone who had run on a treadmill for ten days straight. Thus the fevers, exhaustion, anxiety etc. Glad she's in hospital under obs. Had some scans already and blood cultures and a lovely nurse who we know. Yay. Dr Moore was lovely as well as doctor Barbara. Sam sleeping now. She's in a 4 bed ward with the oldies.

Dr Moore is talking to the biggest transplant hospital in the Satates about Sam. Rare but documented examples of thyroiditis post transplant. He's getting advice.

FRI UPDATE- 12:00pm

2009-10-23T11:52:00.003+11:00

SAM UPDATE
Sam has to go to hospital today till Tues for
* CAT scan of sinus, chest and tummy
* Ultrasound of thyroid
* More blood cultures
* Infectious Diseases check

It looks like she'll be in a shared room but they are trying to get a private room- that way Clare can stay with her.

PLEASE PRAY
*Sam is brave and strong. She is very weak. Pray for wisdom of Drs.

FRI 23rd OCT~ DAY +50

2009-10-23T07:47:00.002+11:00

MESSAGE from CLARE 7:30am
The whole family gathered last night and prayed up a storm over Sam. Coming home from St Vincents yesterday afternoon felt we need to claim the names of God over Sam-came home and printed out 500- we shared praying these over Sam.

She had a fever of 38.9 at 1:10am. Still hot now planning to sleep till I hear from Dr Moore. He is trying to arrange a bed. If nothing in public we will have to go private. I think he is concerned. Praying her temp is due to thyroid.

Re SAM CHAPMAN-
Sam wasn't able to have his BMT yesterday. Please pray for them today. Link to his blog site under 'Info Spots' on the right hand side of this page.

THURS 22nd OCT~ DAY +49

2009-10-22T20:39:00.002+11:00

Sam has had a fever for 10 days now and she is going back to St Vincents again in the morning.

If she still has a fever she they are going to admit her and start a whole bunch of tests to find out what's going on. She doesn't want to stay at the hospital anymore. She needs a miracle.

Sam found out today a friend she met at the RNSH, Andrew Stanton who was 29 and engaged to be married, has died. Please pray for the Froggatt as they are surrounded by so many heartbreaking stories. May they carry the HOPE of the cross that shines into the darkness of cancer.

THANKS!
XXXX

WED 21st OCTOBER~ DAY +48

2009-10-21T21:15:00.002+11:00

PLEASE PRAY EMAIL FROM CLARE 7:00pm:
* Fevers still 6 hrly.
* Had two in-grown toenails cut out by amazing Karin Boccanfuso. So beautiful. I rang and she said she come up this afternoon. One was infected, not much but any infection I guess can contribute to fever.
* Sam extremely shaky. Can't do anything with hands like writing, cutting and craft. Such a bummer cause these things are her outlet.
* Sam slept on and off all day.
* Reid and I escaping for dinner at Avalon. Excited for this.
* Kids eating Silvias famous pasta sauce
* Pray for Chapmans- www.judken.wordpress.com

MONDAY 19th OCTOBER~ DAY +46

2009-10-19T07:29:00.002+11:00

PLEASE PRAY-
* Sam may possibly have VENO-OCCLUSIVE DISEASE
(A complication BMT where the blood vessels that pass through the liver become blocked. Blood flow in the liver is reduced leading to toxic changes in the liver and a reduction in normal liver function.)
* Pray for Sam's THYROID and GUT
* Back at hospital today for BLOOD TESTS and for OCTOGAM INFUSION for her liver

TWEET from SAM @ 5:00pm SUNDAY
Temp only down with panadol. Think it's my thyroid. Uped the pred again + seeing endocrine dr on thurs. Feeling agitated and shaky. X

UPDATE on YESTERDAY from CLARE at 5:30pm SUNDAY
It was SO bad at emergency. The nurse honestly looked like she had escaped from the army and wasn't going to messed with. She insisted Sam change into a flimsy gown though she was shivering and then stabbed her so roughly in the arm that blood literally spurted everywhere. Sam did her best not to scream.

In spite of the fact that I gave her the blood forms Sam needs to have on top of the blood cultures she still had to come back three times for more blood. So stressful for Sam.

There were druggies, party animals,overdosers etc. Cubicle still had last patients urine sample, tissues and coffee in it. We had to do the whole HISTORY of leukaemia again with the various doctors and I kept insisting that I had called in the night, that she is immun suppressed and that her Doctor was on, could we not just call him.
With no sleep my patience was very thin. Eventually a sweet in turn doctor came and then after that chest xrays and then a sweet nurse came and took the ECG.

Finally Dr Moore arrived. He chatted to us for ages. Sam's fever started to sky rocket and he thought admitting her would be best. I begged no and we chatted more and discussed every possible scenario. Blood cultures take three days and nothing came of Wed cultures. He also sent blood to test for VENO-OCCLUSIVE DISEASE (VOD)a post transplant complication. WE then thought maybe the thyroid was again being the problem so he rang the endocrinologist but the one we saw is on leave so we have to see another one next Thursday. All Sam's symptoms could point to thyroid or they could be VOD or they could be GVHD of the gut or bowel. He decided to double her prednisone again to 50 and to let us go home with 6 hrly panadol . (I think he hopes it the thyroid as that is likely to be least complicated of all complications and an overactive thyroid can cause fevers. Apparently if it is the thyroid, in time the donor cells may eradicate the over activity.)

We came home and all slept.
Me the longest I think!
SO we are back tomorrow for blood tests and for octogam infusion for her liver and we will see Dr Moore again.
MASSIVE DAYS! arrgh- so grateful for all your love and prayers!

SAM CHAPMAN BLOGSPOT-
Chapmans have blog now www.judken.wordpress.com