Tiny Earth Angels Reborn Nursery

Update 26th April 2007
Hi everyone,
Sorry the contact has been almost non existent of late, but the time we are spending together at home as a family is less and less and so also becoming more precious. We have not had much of chance to get out or to have visitors but we have not forgotten our family or friends and we hope that you are all well. This is just a quick email to give you a little update on Blake’s progress...
For the past month we have spent more time in hospital than out as our little man has been battling against rotavirus (vomiting and diarrhoea), he has had fluctuating temperatures, high blood pressure and has been dehydrated. He is now also on antibiotics for a chest infection. Most recently he has had a nasal gastric tube inserted to assist with his feeding as the chemo has suppressed his appetite and is weight gain has been minimal.
Blake has come to the end of his second cycle of chemo and has had a follow-up CT Scan of his tumour, as we expected the news wasn't great, the tumour has not responded to the chemo and it has continued to grow. Blake's diagnosis - Atypical Teratoid Rhabdoid Tumour (ATRT) is rare and would otherwise be located in the brain or kidney, the response to chemo is known to not be so good and prognosis of ATRT brain tumours is dismal. For those of you who are interested in searching information on the net please keep in mind that the position of Blake's tumour is extremely rare and almost no information is available. The hospital is providing us with what little information they do have and we know that everyone associated with PMH's Oncology Ward have Blake's best interest at hand.
The doctors have made a decision to change the drugs and the cycles will now be more intense and aggressive, Blake may become quite unwell as the new course of chemo is likely to hit him like a tonne of bricks, in hope that it will also hit the tumour in the same way. There is a possibility that he may have some heart and kidney problems associated with this but he will be closely monitored for those. We are going back into hospital again this Thursday the 26th to begin the new cycles and will be there for maybe a week at this stage, give or take a few days.
All this aside, Blake continues to smile, be happy and to laugh at his big brother Kai (who is proving to be great therapy in himself) and he is achieving all of his baby milestones, rolling, playing with his feet, trying to sit up and cutting his first two bottom teeth (yes, teething on top of all of this!).
We do not know what lies in the roads ahead as each day continues to bring with it it’s own challenge, we do know that we have all the love and support that we could ever ask for and we appreciate all of the emails, calls, messages, cards and gifts. Your well wishes and concern together with Blake’s smiling face are helping us get through each day.
Thank you all… for everything J
With love and appreciation,
Cherrie, Dean, Kai & Blake

Update 3rd May 2007
You are so wonderfully sweet, your gesture has melted my heart and the page you have made for Blake is just over whelming, so I am sending you all the thanks you could possibly imagine. The poem is just gorgeous and of course made me cry, it's so nice to know that even complete strangers are wishing our little man miracles. I will keep you updated best I can and again, thankyou sooooooooo very much :)
Love
Ree, Dean, Kai & Blake
xxx

22nd May 2007
Hello everyone,
As some of you know, we were back in PMH from the 17th to the 21st May for Blake's 4th cycle of chemo and we are pleased to let you know that he is doing extremely well post chemo, other than that he has no desire for food at the moment but that will come with time and until then we will keep tube feeding him so that he maintains his weight. He is due back to PMH tomorrow, 23rd May and next Wednesday 30th May for blood counts and dressing changes and he's then booked for an MRI scan for further imaging on Thursday 31st May. So please keep your fingers crossed for us that we get the news we are praying to hear... that the tumour is responding to the new chemo and is shrinking! The surgeons will then review the images and decide if they can attempt the surgery to remove the tumour or if he will require more cycles of chemo before they can take that step, all of which of course relies on the outcome of the MRI scans.
Blake and I missed a major family event on the weekend due to his chemo protocol... my little brother got married on Saturday 19th May! Congratulations to Chris and Lauren, I was delighted to hear that the wedding was a wonderful occasion, I have heard from many of you that it was a thoroughly enjoyable night and that Kai was very cute and handsome in his little penguin suit. We hope the newly weds enjoy their romantic honeymoon in Fiji and look forward to watching the video and seeing the photo's.
Thank you for all of your messages, it has been great to hear from you and I will of course keep you updated with Blake's progress!
Take Care :)
Love,
Cherrie, Dean, Kai & Blake
xxx
P.S. To everyone at Soul Angels that has visited Blake's Healing and Prayer page and left kind messages, prayers and words of hope in the guest book we thank you very much, it's so nice to sign in, sit and read, cry, and to know that you are all wishing Blake miracles.

2nd June 2007
Although we are still waiting on the official report and surgical review, we have some BRILLIANT news following Blake's MRI yesterday... His oncologist had a sneak at the images and she seems to think that the tumour is responding well to the new chemo and has shrank in size by perhaps as much as 50% !!!!!!
Blake will require another lot of tests, for the monitoring of his heart (cardio echogram & ultrasound) and kidney functions (GFR) and will be admitted into PMH next Wednesday evening so that the tests can be conducted on the morning of Thursday 7th June and his 5th cycle of chemo commenced as scheduled that evening (count dependant on his blood tests).
We are waiting on confirmation from his surgeon and the booking of the neurovascular surgeon, but at this stage they have Blake scheduled for surgery for some time during the week commencing Monday 25th June, with the aim of resecting as much of the tumour as possible. It is likely that he will require more cycles of chemo following that surgery and possibly further surgery however it is too early to know exactly what we can expect or what hurdles we may encounter along the way... we do know that it has been just wonderful to have a dim light in the dark tunnel this week :)
With love and appreciation for all your concern,
Cherrie, Dean, Kai & Blake
xxx

17th June 2007
Hello everyone,
We have yet another turn in events following Blake's admission last Wednesday 6th June.
Hydration was commenced Wednesday night as required for his GFR Thursday morning, the GFR and cardio echogram were completed along with his bloods taken for full blood counts. His count came back showing low level haemoglobin which meant he would require a blood transfusion to give his red cell count a boost prior to commencing chemo that night.
Unfortunately during the course of the transfusion Blake's temperature spiked and the bloods had to be stopped and cultures taken. The cultures revealed an infection in his line (not caused by the transfusion but because the infection was sitting in the line and by using it the bug was pushed into his system which in turn caused him to have high temperatures). This meant that Blake would not be well enough to have his scheduled 5th cycle of chemo before the infection cleared so a course of antibiotics was commenced, however by Sunday morning he was no better and the blood cultures had grown a bug that was known to be resistant to antibiotics. A decision was made to take Blake to theatre, where he was put under general anaesthetic (GA) to have his broviac removed (the line that had been surgically inserted for the purpose of taking bloods and administering the chemo) and a temporary catheter was inserted into his had for the purpose of starting new IV antibiotics.
With the infection still in his system and with the broviac no longer inserted he would be unable to have his chemo so there was initial talk of him going back to theatre to have a pick line inserted (another type of temporary line, however more permanent than the catheter, that chemo could actually be administered through short term) this of course would mean a delay in his scheduled surgery date as he would have to be fully recovered from chemo (which takes around 21 days) prior to having his surgery.
His surgeon then decided that if he didn't have his chemo this stay then he wouldn't require the full recovery time prior to her scheduling his surgery so he was discharged yesterday, 13th June, without having his chemo and with a further course of oral antibiotic to fully clear up his bug so that he is ready for his major surgery, which has now been bought forward to next week!!!!! He will be admitted on Tuesday 19th June to have his blood taken for counts and cross match in preparation for surgery on Wednesday 20th June.
We have already met with and spoken to the surgeon and we know that they are expecting a very complex and lengthy surgery and have a neurovascular surgeon attending that specialises in plastic surgery. Best case scenario, they get in, find dead tissue, remove the entire tumour and avoid any nerve or arterial damage. Worst case scenarios, they find a live tissue tumour infused around the group of nerves and arteries and they have no choice but to leave part of the tumour behind or they have to cut the nerves and blood supply to the arm and have the neurovascular surgeon perform nerve or arterial grafts which may or may not work effectively. There are of course all the usual risks associated with any surgery or GA and there are the added risks of this difficult type of cancer, Blake is facing a possible outcome of permanent nerve damage or compromised blood supply, which may in turn render his arm useless or his arm dying off and him losing it all together.
He will require further chemotherapy following his recovery from surgery and he may also require radiation treatment, which in someone his age would prevent his arm from developing or growing properly. Blake's recovery times in ICU and the surgical ward and his follow-up treatments on Ward 3B are entirely dependant on the outcome of his surgery, so we ask all of you to please keep Blake in your prayers, think of us over the next couple of weeks and we will be in touch when we can.
Love,
Cherrie, Dean, Kai & Blake

For those of you that don't yet know, Blake underwent his surgery as scheduled on Wednesday 20th June, Dean and I took him up to theatre at 9.00 am and then spent the day trying to keep ourselves 'busy'. We received regular updates of his progress throughout the long day, til finally at 10.30 pm, after a mammoth 13 and a half hour surgery, mum and I sat and watched as they took him into the intensive care unit and we then had a further anxious 30 minute wait, while he was settled onto his bed and had a portable chest x-ray to ensure that his incubation tube and newly inserted broviac remained in place during the move from theatre to ICU, before we could go in and be with him. To our surprise he looked absolutely amazing for all he'd endured over the day!

The surgeons (who looked thoroughly exhausted) seemed pleased with the surgery itself, Blake's tumour was resected in full but with some complications, his clavicle was fractured to obtain full access to the mass, the tumour itself was entwined around the vascular group of the brachial plexus and he had to have a reconstruction of the axillary artery, along with ulnar, median and musculocutaneous nerves (basically the main blood supply and the three main nerves which control the arm and hand movement). The plastic surgeon removed "spare part" nerves from the back of his knee to the back of his heel on both of his little legs and a vein from his groin to his knee on his left leg to complete the grafts. Blake's ability to walk or run will not be affected from this but he will have a small section on both feet that will be numb to touch (not to mention some awesome scars)!

We spent a nervous 2 days in ICU with hourly obs to watch and see if the arterial graft would be a success, Blake slept thru Thursday 21st June and remained on a combination of ketamine and morphine for the pain, in particular the nerve pain which was expected to be extreme. Our brave little man awoke slowly from sedation at 8.00 am on Friday 22nd June. The blood supply to his hand has remained perfect, however the nerves will never recover 100% from the grafts and it will take up to 2 years before we know if he will have any control of the movement and any feeling of his arm and hand. The neurovascular/plastic surgeon does not expect to know the success, if any, of the nerve grafts for at least 12 months and Blake will require daily physio on his arm and hand during this time (luckily for Blake his Grandma is a physio assistant and has now been allocated that task). His arm had to remain in a tubigrip sling for 3 weeks to immobilise his shoulder so that the newly grafted nerves remained in place and were not thrown, it now remains in a collar and cuff sling indefinitely because he has no control of his arm movement.

The pathology results following Blake's surgery weren't good, of the 5 lymph nodes removed, 1 was malignant, his post op treatment was under review with possible options being 2 or 4 more cycles of chemo, megatherapy (stem cell harvest and rescue) and radiotherapy was also considered. A decision was made amongst the oncologists to commence another cycle of chemo on Thursday 5th July. Blake remained in hospital for the 3 week duration of his shoulder immobilisation (getting him home in a car seat was impossible!), he was weaned off morphine over that time and he recovered extremely well from his surgery. A post op ct scan was also booked for Thursday 5th July to give the doctors a baseline picture of the tumour site prior to commencing what would be Blake's 5th cycle of chemo.

Following his ct scan on that day his oncologist came to us with devastating news, Blake's ct scan result was a much 'worse case scenario' than we had bargained for, his cancer had already spread and a new lesion was found in his right lung, this was something that neither we nor the doctors were expecting nor had prepared ourselves for and we still have not recovered from that news.

Blake completed his 5th chemo cycle as scheduled but started to show some signs of infection, he had a cardio echo gram conducted which came back normal and was placed on a course of iv antibiotics for a few days, he was also given a blood transfusion for low haemoglobin before we finally bought him home on Thursday 12th July after 23 days in hospital (he cut two more teeth AND gave up his dummy during his long stay!).

We had a lovely four days at home and simply enjoyed some family time, however our time home was short lived as Blake was immune deficient from chemo and developed a fever, on Monday 16th July he was re-admitted to ward 3B and placed back on hydration and iv antibiotics for a viral infection and tonsillitis, thankfully his blood cultures did not grow any bacteria so we got the all clear and again came home on Wednesday 18th July.

We are having some very hard days and long nights as we await the next round of scans but we plan to enjoy a few days home together before his next booked admission which is on Sunday 22nd July for hydration, in preparation for his pet scan booked at Sir Charles Gardiner Hospital on Monday 23rd July. A ct scan is also booked for Thursday 2nd August which will cover his head, chest and abdomen and these two scans together will tell us how much the bastard cowardly disease has already spread so that we, along with the whole oncology team, can decide on Blake's further treatment.

We have not, and will not, give up on our little fighter, but we will not continue to make him sick with therapy if there is no reason to, his tumour continued to grow during treatment prior to resection and the cancer has already spread to at least one other spot that we know of, sadly Blake's type of cancer initially responds well to therapy but quickly relapses, making treatment extremely difficult. We will be reaching decisions over the next few weeks that will be made only in Blake's best interest and they will be the most difficult decisions that Dean and I will ever have to make.

I have attached some photos for your amazement, from waiting to go to theatre for surgery, to the days and weeks post op, they are a remarkable display of Blake's speedy recovery and incredible ability to be all smiles, all of the time. Please continue to keep everything crossed and send out healing thoughts and prayers, not only for Blake but for ALL of the families of ward 3b.

8th August 2007
Hi everyone,
I know that some of you are still anxiously waiting for the news on Blake's scans... as were we!
His PET scan at Charlies on Monday 23rd July, was without incident (believe it or not) and the results were good in that there were no signs of any more new lesions or tumours other than the nodule in his right lung. His lung wasn't showing as a 'hot spot' on the scan which was good, although that could have been masked by his last cycle of chemo. There was no standing decision made at that time regarding further treatment options and we had yet another game of wait-n-see pending the CT scan result.
The result of CT scan on Thursday 2nd August was not dissimilar to that of the PET scan, there were still no signs of any new tumours, his head, chest and abdo were all clear other than the lung lesion and the news on that was that it seemed to have had a response to the chemo and had shrunk in size by maybe a third!!! His treatment options were discussed in a meeting between the entire oncology team on Friday 3rd August and from that meeting the consensus is to hit the tumour with another 2 cycles of chemo and then re-image and see what's happening from there. We will be back on the ward on Tuesday 7th August for about 5 days for the next cycle of chemo.
Although we are still unable to look too far ahead, we are glad to be giving Blake another chance of beating the dreadful disease. He will, as always, be monitored very closely over the next 2 cycles of chemo to ensure that he is tolerating the drugs, particularly those that he is reaching his allowance of. Blake is certainly a fighter and he's recovered well from everything that he's been up against so far so we will continue to cling to hope and enjoy all his smiles.
We'd like to say a VERY BIG THANK YOU to all the wonderful people that have been involved in organising or gotten behind any of the fundraising opportunities and events that are being held on our behalf, we are extremely appreciative for the financial aid which may allow us to spend more quality time together as a family.
Over the past 5 months we have received many kind and thoughtful cards and gifts and today was no exception. We have no idea how we can truly express our eternal thanks and gratitude to the very big hearted Ross & Kylie Webster of Brookwood Realty, Todd Haffner and his Staff at Mortgage Choice, Colin & Jude Lauder and Rod Wilson & Nerissa Dixon for donating to us a fabulous Sony Handycam so that we can capture and record special moments with our two beautiful (and boisterous) boys. Thank you just isn't enough!!!
With love from,
Cherrie, Dean, Kai & Blake
xox

19th August 2007
Just a quick note to let you know that Blake completed his 6th cycle of chemo without too much drama, he went into hospital as scheduled on Tuesday 7th August. The chemo vomits started by Wednesday night and they haven't stopped yet but other than that and no appetite, he's doing well considering. We came home on Saturday 11th August and are not due back until outpatients clinic for blood counts on Wednesday 15th August.
Blake will be monitored with a GFR (kidney test) and Cardio echogram (heart ultrasound) on Thursday 23rd August, assuming those test results are both okay he is due back for chemo cycle number 7 on Tuesday 28th August.
We are keeping everything crossed that he stays well in between cycles and are hoping to catch up with those of you attending the fundraising event at the Jennacubbine Tavern on Friday 24th August. Many thanks for the overwhelming response of bookings and donations for the night, they are greatly appreciated.
Also, my apologies for giving a big plug to the wrong bloody company, we would love to thank the wonderful Todd Haffner and staff of MORTGAGE FORCE for their generous contribution towards our fabulous Sony Handycam :)
With Love & Appreciation
Ree, Dean, Kai & Blake

19th September 2007
Please let me start Blake's update by saying... A GREAT BIG THANK YOU! To Brett, Michelle, Family and Staff of the Jenna Tavern and to absolutely everyone that somehow got behind or involved in Blake's fundraiser, we had a huge response, a fabulous turnout and a staggering $15,500 was raised, which comes as a relief as Dean is likely to require a lot of time off work to spend with us in the coming months. We were more than pleased to see that barely anyone left the place empty handed and that most picked up a great bargain or two. Words just can't express our gratitude and we wish we could thank each and everyone of you personally for your support and generosity towards fundraising, for auction and raffle items kindly donated and collected, for thoughtful gifts, for contributions of cash, for purchasing and wearing 'A Band for Baby Blake' (and to Emma, dear Emma for having such an idea of brilliance and arranging to have the wristbands made in the first place), for buying raffle tickets and mostly for your time and great effort in helping to see us through this dreaded journey, not only to our family and friends but also to the many people who have been touched by Blake's story and have stepped up to help us although they have never even met us :)
We had a very emotional week leading up to Blake's admission for chemo, not only with the big night at the Jenna but also in having to say a very sad goodbye at the funeral of a life time family friend whose life was tragically taken in South Australia on Monday 6th August. To a close family that has been there to support us on every rollercoaster ride of our lives we only wish we could fix your heart ache, rest in peace Craig and when you get to that big bar in sky have a beer with Kazzie for us all xxx
Blake's results from a kidney function test (GFR) and a cardio echogram (ECG) conducted on Thursday 23rd August were normal. He was admitted to the ward on Tuesday 28th August for chemo cycle number seven and that presented us with some long days and restless nights with the usual vomits and diarrhoea (now fondly referred to as spews-n-poos!). We amused ourselves over the week by learning to wave bye-bye and shaking our head to say no. Blake sits up on his own and does his best to get around without the use of his left arm, wanting so much to crawl with endless frustration. He was discharged on Saturday 1st September (being 6 months since our very first admission on 1st March) and when Daddy came to pick us up from the hospital we surprised him with an afternoon off at the footy (with our good mate Crazy) to see the Eagles-v-Bombers game at Subiaco oval with his brand new Eagles shirt and cap... Happy (day early) Fathers Day 2007 from Kai and Blake!!!
Yesterday, Wednesday 5th September we got home at 8.00pm after we left home at 8.30am to be back at out patients (o/p) clinic for review & blood count. Blake is again significantly neutropaenic (having virtually no functioning immune system), his platelets are seriously low (which could cause big problems if he has any bleeding or bruising) and his haemoglobin (red cell count) was very low and he required a blood transfusion to give his red cell count a boost. A stool sample taken during the course of his chemo had since revealed a clostridium bug causing his diarrhoea and now subsequently a nasty nappy rash, so he has began yet another a course of antibiotic to fight against that.
The next step in Blake's treatment is a possible (CD34 count dependant) stem cell collection. This will then prepare him for mega therapy and stem cell rescue should the ct scan booked on the 20th September bring promising news and further treatment options. Blake is again due for o/p clinic tomorrow Friday 7th September for full blood count (FBC) and also again on Monday 10th September, should his CD34 count rise to an acceptable level by Monday he will have stem cell collection over the day in the intensive care unit (ICU) under heavy sedation.
I have attached some recent photos of the spirit and fight that is our little boy and his amazing therapy "Buzz Like Kai"
This is where I stopped to take a break (at 12.30am on Thursday 6th September) before going through our countless number of photos to pick and choose which of the many I would attach to the email. I went in to check on my boys, Dean and Kai were both happily snoring away but Blake was fairly unsettled and by 1.00am he had spiked a temperature of 38.9 degrees. I phoned the ward and was advised by the nursing co-ordinator to bring him back in and so by 2.15am on Thursday 6th September Blake was re-admitted to ward 3B. He had blood cultures taken and a course of IV antibiotics was started as a preventative measure against the dangerous combination of his high temp and him being neutropaenic. His temp came down and I managed to get him back to sleep in my lap on the 'comfy' hospital recliner just after 5.00am (YAWN!) We both then slept on and off over the day, Blake seemed most happy to be held while he slept which was a good sign that he was feeling the best.
His FBC on Friday 7th September revealed a further drop in his platelets so he was crossed matched and had his very first platelet transfusion. He learnt a new word and spent the entire day passing his toys to me so that he could say 'ta' over and over again while reaching for his toys back. Saturday 8th September his 'ta' was elaborated to 'docta' which made a lot of ward staff smile, particularly the nurses who were all promoted to 'docta' by Blake.
Sunday 9th September was a good day because Daddy and Kai came to visit us at the hospital. Daddy got some quiet time with Blake while Kai and I went up to megazone (the hospitals brilliant indoor play area for the kids) for some basketball and ute driving before Kai made me a very nice 'coffee and cake' in the pretend play kitchen. After our goodbyes Blake was fasted overnight in preparation for his stem cell collection on Monday 10th September.
By lunch time Monday I had an unhappy hungry baby on my hands when we eventually got word that Blake was bumped off the list for stem cell collection, not due to his count but because of space restrictions in ICU. He was very relieved to finally see his bottle although probably not so happy to soon learn that he'd have to do it all over again for stem cell collection the next day, Tuesday 11th September.
Blake's CD34 count on Tuesday was great however his platelet count had dropped further and he would require another platelet transfusion prior to going to ICU. We spent the best part of the day in ICU watching the amazing machine separate blood and harvest stem cells whilst being entertained by our heavily sedated baby who resembled a very happy drunk. The stress and anxiety of the procedure were slowly overcome by watching Blake laughing at his feet as he waved them in the air trying to get at them with one non functioning arm and one good arm that was pinned to the bed! With his successful harvest complete we returned to the ward and waited for the okay to finally bring Blake home again after six days in hospital. We arrived home just before 8.00pm Tuesday 11th September only to find that Blake's broviac had lost its loop and would need to be re-dressed. On advice from the nursing co-ordinator we taped it over night and then returned again to O/P clinic on Wednesday 12th September for the dressing change.
Some of the wonderfully brave kids of ward 3B were filmed for an advertisement for the 'Big Walk', an 18km walk from the Perth Esplanade to Fremantle Esplanade, sponsored by John Hughes being a fundraising event for the hospital which will be held on Sunday 21st October 2007, proceeds from which will fund oncology nurses to care for Blake and his friends of ward 3B. Blake was filmed during the process of his dressing change (which for him is an unpleasant experience) please keep an eye on your tv for his stunning television debut (should his footage be used that is) and remember we went for the sympathy vote so look for the snot and tears!!
We have been home since that afternoon battling colds and trying to keep Blake as well as possible. He is next due back tomorrow, Thursday 20th September for the CT scan of his head, neck, left axilla and chest. We have an anxious wait ahead before we learn if the tumour in Blake's lung has had a response to the last two cycles of chemo and if he is able to proceed with further active treatment, news of which may not be received on that day.
As always, we thank you for your ongoing love and support.
With true gratitude, love the Cahill Family xxx

9th october 07
Hello kind & wonderful people, my apologies for the delay in Blake's update, I have been busy enjoying some time with my family :)

We received news from the CT scan on Thursday 20th September and it would seem that there has been a reduction in size of the tumour on Blake's right lung and there were no signs of any other abnormalities in his head, neck or left axilla (his primary tumour sight). There was however another shaded area on his right lung showing up on the scan that may or may not be a new nodule or it could possibly be residual infection, his oncologist is prepared to attempt resection of the secondary tumour and has recently informed us that his surgery is scheduled for 1.15 pm Monday 15th October.
We have not yet spoken with the surgeon, who is a chest specialist, but the information we have so far indicates that the tumour is clear of any vessels entering the lobes and can be resected without causing any problem to the lung function. We believe that the idea is to collapse Blake's lungs, one at a time, during surgery for the surgeon to physically feel them for any further tumour and then to remove as little lung tissue as possible via a wedge resection.
The length of his hospital stay post surgery is unknown at this stage but may be 7-10 days or more, it will depend entirely on his recovery. He may have to spend sometime in ICU and is then likely to go to Ward 5C which is the surgical ward (unless we get extremely lucky like last time and go directly from ICU to our second home - Ward 3B). We are hoping to have Blake home and well (with positive pathology results) in time for his 1st birthday (25th October) but as we have learned over the past 7 months we can't make plans too far in advance so Blake and Kai (turning 3 on 31st October) may have to have a belated birthday party this year!
Should Blake have any further relapse he is unable to have any more cycles of the chemotherapy that he has already had as he has reached his lifetime tolerance level of some of the drugs, and so will have no further active treatment other than palliative care. Post surgery and recovery Blake will undergo a further PET scan at SCGH, he needs to be completely tumour free to continue with mega therapy and stem cell rescue which will have him in hospital for 4-8 weeks.
Please keep everything crossed and the healing thoughts and prayers coming for Blake, that he is one of the miracle (less than) 10% of kids that beat Atypical Teratoid Rhabdoid Tumour.
Love The Cahill's
Cherrie, Dean, Kai & Blake

Surgery went ahead as scheduled on Monday 15th October, we left Blake in theatre at 1.45pm and were called back to ICU at 4.15pm where Blake was comfortably recovering with the aid of some i.v. morphine. By all accounts the surgery went well, the surgeon avoided a Thoracotomy (separating Blake's ribs to expose his lungs) reducing the risk of infection and speeding up his recovery period. He successfully removed the nodule in a video-assisted thoracoscopic surgery (inserting a thin tube videoscope with a camera and small surgical instruments attached through small cuts made between the ribs) via a wedge resection.

By 6.30am Tuesday 16th October Blake had been awake, flirted with his nurse (and anyone else in distance giving him the slightest bit of attention) he then wore himself out trying to sit up and reach for anything in sight and was then happy to be resting again til lunch time. Our amazing super fast recovery star then had his chest drain removed, his urine catheter out, his morphine turned off and was moved back to ward 3B (yep, we bypassed surgical ward 5C again YIPPPPPEEEE) all before 1.00pm.

Around 6.15pm he had a slight spike in his temp which caused the doctor to take blood cultures and place Blake on i.v. antibiotics just as a precaution incase an infection was brewing, his i.v. fluids were also increased to allow for his dehydration over the fasting period before and during surgery, his temperature came back down and nothing grew from the blood cultures.

Wednesday 17th October was family fun day at PMH and we had a lovely visit from Daddy, Kai, Nan and Pop followed by a relaxing afteroon of catch up on real sleep for Blake and I wish I could say the same for me but watching and admiring Blake for the arvo was reward enough. We also had a visit from international super star Nicole Richie, which Blake slept through, and she was kind enough to pose for a photo with our sleeping beauty in any case, but on a bigger more exciting note, Blake was visited by the wonderful Rachel from physio (which he was awake for) and she was so impressed with his shoulder and elbow movement that Blake has finally shredded the sling and now has a wonderful and extremely cute new little wrist support.

We were delighted to hear that Blake had recovered so well from surgery that we could go home on Thursday 18th October after just 4 days, all be it for only 3 days as Blake had a very busy schedule in the week ahead but hey 3 days home IS 3 days home :)

Blake was due back to ward 3B on Sunday 21st October for hydration pre his PET scan at SCGH at 8.00am Monday 22 October. He had to fast from midnight Sunday and after several delays for various reasons our very hungry and now grumpy boy was finally scanned just after 11.30am. He was transferred back to PMH by ambulance and skolled his largest bottle ever on the trip back!

Tuesday 23rd October was another toey morning as again Blake had to fast for his CT scan at PMH booked for 10.00am, thankfully this scan was without delay or incident and was competed as scheduled under general anaesthetic.

The following day, Wednesday 24th October was met with yet again more fasting for a bone scan to be conducted under sedation, Blake was given the highest allowed oral dosage of chloral for his sedation which worked well and had him sleeping right up until the time of moving him onto the bone scan machine where he wiggled and squirmed his way out of the straps and resembled a happy drunk. We had a second attempt at the bone scan around 2.00pm and had to accept that the scan results would not be as comprehensive as possible and that the scan would only be reschedule if absolutely necessary (because he is injected with a nuclear tracer which in turn makes him radioactive the dose would not be given a second time for a further attempt unless absolutely necessary).

After all the fuss we said our many good-byes and were heading out the door as we received a wonderful big birthday gift (an electronic farmhouse set) from the ward for Blake (and apparently for Kai!), we then headed home to see Kai and enjoy a family dinner with Grandma, Nan, Pop and Uncle Darryn in early celebration of Blake's 1st birthday on Thursday 25th October. We all enjoyed the actual day of Blake's birthday (although I'm sure Kai enjoyed it the most with all his great help in opening the many presents!) and had wonderful company in Dyma, Loz, Crazy and the beautiful Randall Girls as we dined on Little Caesar's pizzas and The Cheesecake Shop Mudcake. The birthday celebrations continued into Friday and slowly came to end over the weekend.

Tuesday 30th October we were again back to ward 3B for GFR (kidney function test), Cardio Echo and Chest X-ray. Also we were meeting with the consultant to hear the news of the pathology results from surgery and PET, CT and bone scan results. The pathology results confirmed that the nodule removed in surgery was infact tumour (surrounded in healthy lung tissue) as suspected. Sadly my email can't end in the same happy note in which it began, as we received more devastating news that the other grey area on Blake's lung (that was queried in the previous round of scans and were hoped to be residual infection) has infact developed into another lung lesion.

We are playing the waiting game yet again until next Tuesday 6th November where Blake will have another Chest X-ray to determine the growth of the lung lesion and to find out if he is still able to undergo megatherapy and stem cell rescue and if so, Dean and I will then have to decide if we want to put him through it or not. This is our very last hope and final therapy option and still the odds of winning the fight with the bastard disease are slim.

There are many side affects from the megatherapy and stem cell rescue, including bacterial and fungal infections, complete liver failure, loss of appetite and intolerance of NG (nasal gastric) feeds to mention a few, all of which can result in lengthy hospital stays, the need to be treated in ICU and once Blake recovers enough to leave the hospital we will have to stay close to PMH and at best will have leave to stay at the Ronald McDonald House for anytime from 2-8 weeks before we would be allowed to bring him home.

There is no evidence or case study to suggest that megatherapy and stem cell rescue will benefit Blake in his fight against his type of cancer but on the other hand there is no evidence to say that it won't help him either, so we will not give up hope and are still waiting for his miracle.

We would like to say a very big happy birthday for yesterday to the most understanding, kind hearted three year old we know. Happy Birthday Kai you are the best big brother ever and we all love you very much. We have all enjoyed (and continue to enjoy) your birthday celebrations also :)

Thank you all very much for your continued love and support.
Love Cherrie, Dean, Kai & Blake

P.S. For those of you that know people keeping track of Blake's update through soul angels please let them know that the site has now closed down but his update can now be found at http://tinyearthangels.com/babyblake.html (all our love and appreciation to Leah and Nicole for everything they've done and continue to do, big kisses to you both from Blake xxx)

News of the x-ray on Tuesday 6th November was positive in that the post surgery infection/fluid on Blake's lung has cleared some what in the last week and that there doesn't appear to be a significant growth in the second lung lesion.

The team have had yet another "Blake Meeting" and in full circle from my last email a decision has been made between the oncology consultant and the surgeon to revert back to plan A (which the team all agreed should have been done in the first place) and perform the Thoracotomy after all (isn't hindsight a wonderful thing!).

During the Thoracotomy procedure the surgeon will separate Blake's rib cage (and is likely to break a few ribs in the process) to expose his lungs, he will then collapse Blake's lungs one at a time and get his hands inside Blake's chest and physically feel his lungs for any further signs of tumour. He will then attempt to remove any lumps with as little lung tissue as possible via wedge resections.

This new lesion is located on the posterior side in the lower lobe of the right lung and will not be as easily accessible as the previous nodule, however this and any consequent lesions need to be removed prior to being able to commence megatherapy and stem cell rescue. A further PET scan will be booked for approximately two weeks post surgery and the scan results must be clear for us to be able to proceed with the megatherapy and stem cell rescue.

Friday 9th November we have a follow-up appointment with the plastic surgeon and physio to review the progress of Blake's nerve and arterial grafts from his first tumour resection in his left axilla and we are also, thanks to Camp Quality and Myer, looking forward to meeting Santa on the Myer Christmas Train later that afternoon.

Blake's Thoracotomy is scheduled for the afternoon of Monday 12th November and he is likely to spend a day or two recovering in ICU and up to five or so days in the surgical ward 5C. We ask you to please wish Blake safe surgery, speedy recovery and clear PET scan results :)

(We have MANY photos of Blake but I had to attach these ones which show Blake's new hair, eyebrows and eyelashes!)

We arrived at PMH ward 3B as scheduled on the morning of Monday 12th November for Blake's thoracotomy and as requested took him in for a chest x-ray prior to surgery, the results of which revealed a small amount of growth in the size of the tumour, we then had an anxious wait for surgery booked for 1.15pm. During a very long morning of confusion we were advised that the surgery had been cancelled due to bed/nursing shortages in ICU, it would seem that we were finally to become victims of the ailing health system. Following some careful bed/ward swapping by the ICU staff a space was created for Blake post-surgery and we were informed that the surgery could now go ahead as long as he was still fasting, thankfully on some great advice by the ward 3B staff he was indeed still fasting!

Blake eventually went into theatre at 2.45pm and we were called back to ICU at 5.30pm where he was comfortably recovering (this time without the aid of i.v. morphine) on oral panadol !!!!! Again the surgery went well and again (in Blake's best interest) the surgeon avoided a Thoracotomy in order to reduce the risk of infection and speed up the recovery period so that we might commence megatherapy and stem cell rescue sooner rather than later.

The 10mm lesion along with part of the lower right lung lobe (to allow healthy tissue margins) were removed successfully via a wedge resection in another video-assisted thoracoscopy. Unfortunately though they found yet another tumour we weren't expecting, this one on his chest cavity wall measuring around 3mm that was likely to be new or too small to have shown up on the last round of scans, it too was successfully resected.

By 11.30pm Blake was awake and unsettled (certainly not like him) and looked to be quite uncomfortable, he was given some more oral pain relief and was back to sleep just after 1.00am so I took the opportunity to grab some sleep in the parents accommodation down the hall. I was awoken with a phone call at 5.15am to advise me that Blake was awake, unhappy and calling for me (it's so nice to be wanted!!). Upon seeing his distress I asked the nurse if he might be in more pain then they anticipated and she agreed that he possibly was and arranged a morphine and midazolam protocol to aid his rest and recovery. Later that morning a post surgery chest x-ray revealed a significant build up of fluid in Blake's chest so he was moved from ICU not to ward 3B but to the surgical ward 5C with his chest drain intact at 11.00am on Tuesday 13th November.

Around 4.15pm he had a spike in his temp of 38.5C which again could be sign of infection so the doctor asked for blood cultures and placed Blake on i.v. antibiotics as a precaution, his temperature slowly came down over the night and nothing grew from the blood cultures.

Wednesday 14th November a further chest x-ray was conducted to check on the fluid build up, the chest drain had stopped draining but appeared to be blocked as the fluid build-up was still substantial. The chest drain was removed later that day and was followed by a rather large amount of oozing from the wound site. After around half an hour the oozing stopped and the wound site was redressed and started to look like it would heal well. Again Blake had an amazingly fast recovery and following ANOTHER chest x-ray (yes he just might start to glow in the dark soon!) we were given the all clear to take him home at 4.30pm on Thursday 15th November.

Friday 16th November Blake commenced a seven day course of high dose medication to prepare him for megatherapy. He will be admitted back to ward 3B this Friday 23rd November for hydration and will commence his megatherapy on either Saturday 24th or Sunday 25th November. He will endure a combination of three mega dose chemotherapy drugs (which he has not yet been introduced to and will most likely make him ill) over a period of eight days, the start of which is called day minus eight. On completion of the megatherapy (day zero) he will have his stem cells returned in hope of rescuing his bone marrow from the megatherapy. Blake's danger period and susceptibility to infections will be greatest from day plus five through to day plus fourteen (being five to fourteen days from when his stem cells are returned) and he may need to spend a part of his stay in ICU and is likely to require blood and platelet transfusions.

Although we are risking making Blake sick, Dean and I agree with our wonderful consultant paediatric oncologist that he is not yet ready to give-up his fight against ATRT (as others amongst the team have suggested we let him do) we do not see defeat in his eyes and we will not give up until we have exhausted every treatment option available to him so please join us in wait and hope for Blake's miracle.

As we go into battle again we face the many side affects from the megatherapy and stem cell rescue (bacterial and fungal infections, complete liver failure, loss of appetite and intolerance of nasal gastric feeds to mention a few) and we are also facing a long term hospital stay, possibly in ICU and perhaps also we will be discovering the wonderful world of the Ronald McDonald House Charity before we will be allowed to bring Blake home.

As we are unlikely to be home again before Christmas and New Year's we take this opportunity to thank each and everyone of you for your love and continued support over the last eight months. We wish for you all a very Merry Christmas and hope that the year 2008 brings health, wealth and happiness to you and your family.

With great appreciation from,

Cherrie, Dean, Kai & Blake

xxx

P.S. Our wonderful and thoughtful friend Emma is still selling $3 'Bands for Baby Blake' to raise funds which will help to assist us financially as Dean continues to spend more and more time off work to care for Kai and to spend invaluable time at the hospital with Blake. If you or your business would like to help Emma with sales please email her at ebani@bigpond.net.au

THANK YOU :)

Hello & Happy New Year... We hope you all had a wonderful festive season full of good cheer :)

I have made many attempts at writing Blake's update since we've been home but I have struggled to find the words that describe watching our baby go through hell whilst being able to do nothing but to sit and watch him suffer. It is one thing to read the list of likely side affects but it is another to actually see them unfold on someone so innocent. A good friend said to me the other day that she felt like she was reading my diary when she reads Blake's updates (thank you Jo) so I have decided to do exactly that and make this update like my daily journal. I apologise in advance for this lengthy email but it is really the only way I can truly express Blake's latest battle in his fight against cancer.

Prior to commencing his megatherapy Blake had a chest x-ray on Friday 23rd November which showed no significant change in his lung since the surgery, if anything it actually appeared more clear of infection, which was great news! He was weighed and measured as a starting point for megatherapy, his weight being 9.4kg and his height 74cm. His megatherapy start date was to be postponed to Tuesday 27th November due to the thawing procedures of his stem cells, so we got to turn around and come home for the weekend, two unplanned days at home - NICE!

On Monday 26th November (day -8) we were all packed up and ready for our extended stay. We arrived to Ward 3B before 9.00am and had a long day of waiting and playing games to entertain the boys before finally starting hydration at 5.30pm. By 6.30pm Blake had his insuflons (small plastic catheters placed under the skin for daily injections of medication) inserted into his left and right thighs. Dean & Kai moved their things over to the Ronald McDonald House and set themselves up in their new home away from home (a small room with two beds, a tv, a wardrobe and an ensuite) which we were extremely grateful to have.

2.15pm Tuesday 27th November (day -7) saw the start of megatherapy, a 98 hour continuous iv infusion of a combination of three drugs; Carboplatin, Etoposide (VP16) and Melphalan. Likely side effects to be expected being, nausea and vomiting, Myelosuppression (which is a decrease in the number of red and white blood cells and platelets made in the bone marrow; increasing the chance of infection, bleeding and anaemia), abnormal levels of salts in the body like sodium and potassium, anorexia, hair loss, diarrhoea and mucositis (ulceration of the lining of the mouth, oesophagus and intestines resulting in severe pain and excess secretions from the mouth, it can also lead to diarrhoea and breakdown of the skin around the anus. It can make the gastrointestinal tract one of the most common sites to infection and morphine is given intravenously to control the pain. Healing only occurs as the white blood cell count improves).

Blake remained his usual happy and playful self through Tuesday and Wednesday with no signs of side effects, however by Thursday 29th November (day-5) he was grumpy, tired and very lethargic. On Friday 30th November (day-6) the vomiting started (and didn't stop!) and Blake was continually unsettled and restless. His megatherapy ceased at 4.15pm on Saturday 1st December (day -3). Sunday 2nd December (Day -2) was Blakes first rest day, he also received his very first transfusion of immunoglobulins (antibodies). His second rest day, Monday 3rd December (day-1) saw the start of diarrhoea along with the continued vomiting, he was suspected of being in early stages of mucusitis, was given codeine for his pain relief and had an extremely uncomfortable and restless night.

Day 0, Tuesday 4th December Blake tested positive to Clostridium, a diarrhoea causing bug that would be hard to kick whilst being neutropenic. He was given a pre-med prior to having 18ml of his stem cells returned over the 50 minutes between 12.00-12.50pm. The stem cells are preserved in Dimethyl Sulfoxide (DMSO) to stop them breaking down, the DMSO is removed from the body through the lungs and gives a very rancid smell like off oysters, poor Blake had disgusting breath and body odour for the following few days. His oxygen sats dropped too low and he was given oxygen via a mask from 2.00pm for a suspected chest infection. He began to look really sick and more miserable than we've ever seen him and an iv infusion of morphine was commenced at 5.00pm to assist in his pain relief. His oxygen mask was replaced with nasal prongs at 10.30pm due to an increasing drop in his oxygen saturation levels.

Wednesday 5th December (Day +1) the doctor suspected Blake was in respiratory distress and so ordered a portable chest x-ray to confirm a chest infection, his oxygen was continued. His clostridium worsened and he was kept on his morphine infusion for pain relief. Blake had no diet or desire for food for the entire day. Grandma & I stayed with him and struggled to comfort him while Dean and Kai enjoyed some time out at their very first wiggles concert. Imogen's wonderful mum (and everybody's friend) Fiona came to visit me that night to try and help keep me sane (as she does have an understanding of this nightmare that we're living)!

Day +2, Thursday 6th December was just horrible, Blake had no diet orally and was only tolerating nasal gastric (NG) feeds of 10ml/hour, his morphine was increased as he was in considerably more pain with his mucusitis worsening, his chest infection required antibiotics, he was breathing too hard and had a high heart rate, his blood pressure was low as were his blood counts and his insuflons were removed due to a drop in his level of platelets (a type of blood cell which stops bleeding and helps to form clots).

The following day, Friday 7th December (Day +3) was very similar except that Blake was no longer tolerating even 10ml/hour of NG feeds and now required TPN (Total Parenteral Nutrition - intravenous nutrition given through the CVC/Broviac when normal or NG feeds are not tolerated). The NG tube had to be re-inserted after being thrown up during the endless vomiting. The morphine was again adjusted to a higher rate and he required a platelet transfusion.

Poos-n-spews continued to be a problem on Day +4, Saturday 8th December, Blake was extremely sore with mucusitis and to have diarrhoea on top of this was certainly a double whammy. He required a six hour infusion of potassium phosphate to improve his body's salt levels. The morphine was turned down as the doctor thought he might have been a little narked and his oxygen was turned off at 9.00am to allow him to declare his breathing sats. Another portable chest x-ray was conducted to see if the infection was clearing with the help of the antibiotic. Just after 3.00pm the morphine was turned back up as Blake became more unsettled and by 9.30pm he again required the oxygen for sufficient oxygen saturation levels.

Sunday 9th December (Day+5) Blake was again pale and lethargic, his blood counts revealed he would require a blood transfusion for low level haemoglobin, he also required another six hour potassium phosphate infusion to again boost his body's salt levels. His rate of morphine was increased as he was in continuous pain with the mucusitis & diarrhoea.

We didn't think it was possible but unfortunately it was, by Day +6 Monday 10th December the mucusitis had worsened and Blake now had blood in his stools from the ulceration of his gastrointestinal tract, his mouth was fully ulcerated also and his morphine was upped to 2.0ml/hour. Again he required another six hour infusion of potassium phosphate and also another platelet transfusion. He had to suffer the NG tube being re-inserted as again it was thrown up.

Day +7, Tuesday 11th December Blake actually seemed a little brighter and more responsive so his oxygen was turned off at 8.15am however he continued to breath hard and fast and he required the oxygen again by 2.15pm. His salt levels were still insufficient and he had yet another six hour potassium phosphate infusion. Wednesday 12th December our little man started to lose his hair again, he awoke in the morning leaving a fair amount of hair behind on his bed, still it was a good day as for the first time in over a week he was happy sitting up playing (with the great big box of new toys from the make-a-wish foundation), needless to say he completely exhausted himself in no time and again threw up the NG tube!

Thursday 13th December (Day +9) saw a slight improvement and the morphine was turned down by half to 1.0ml/hour. The oxygen was turned off for a few hours in the morning to see how Blake would cope without it but it was required again by just after lunch and he required another platelet transfusion.

Blake managed an entire day (well from 9.15am - 11.30pm) without the aid of oxygen on Friday 14th December (Day+10), he still however required oxygen overnight. Although his poos-n-spews hadn't stopped or slowed since they started the doctor suggested to turn his NG feeds back up to 10ml/hour (Blake had been on a continuous feed of 5ml/hour since the introduction of the TPN seven days ago), he basically had had no oral diet in a week and unfortunately he still couldn't tolerate the feed and it was turned back to 5ml/hour before 6.00pm.

Day +11, Saturday 15th December he required yet another platelet transfusion but did manage without the aid of oxygen for the day (from 10.00am - 10.00pm) it was however needed overnight. On Sunday 16th December (Day +12) Blake really turned a corner, he had his first night without the oxygen on since having his stem cells returned twelve days ago!! His morphine was turned down again by half to 0.5ml/hour and he finally tolerated NG feed of 10ml/hour!

Things started looking up on Monday 17th December (Day +13) Blake actually ate a few small spoons of weetbix for breakfast HOORAY!!!! His morphine was down to 0.2ml/hour by 6.00pm and by midnight he was tolerating NG feeds at 20ml/hour. He would still require regular blood products (and indeed had more platelets that day) and was a way off being well enough to come home yet.

Blake finally kicked the morphine on Day +14, Tuesday 18th December and by Wednesday 19th December (Day +15) he was tolerating sufficient NG feeds at 25ml/hour that he no longer required the TPN (after twelve long days). His salt levels were still low and again he had another six hour infusion of potassium phosphate. Day +16, Thursday 20th December he required a platelet transfusion and he was practically completely bald again! The following day, Friday 21st December he was again anaemic and needed another blood transfusion. He was visited by the wonderful Sylvia & Beck from the Camp Quality Office (who Kai affectionately calls 'The Quality Ladies') who surprised us with a huge (bigger than Blake) Santa... made entirely of three kilos of very fine scrumptious Lindt chocolate. (For those of you that know me well you will be shocked to learn that we broke him into pieces and shared our delicious gift with the entire ward - no I did not eat it all myself).

By Saturday 22nd December Blake was tolerating bolus NG feeds throughout the day and was also tolerating a staggering 40ml/hour for a ten hour continuous overnight feed. On Sunday 23rd December he had another good day and spent some special time with Grandma as Dean & I took Kai to another concert (Santa's Big Big Wonderful Christmas Show) to reward him for his patience during Blake's treatment cycles. Trying to keep a healthy three year old boy busy & entertained whilst quiet & well behaved (without screaming) in the hospital environment would prove to be as difficult as watching Blake undergo the recovery of the stem cell rescue process itself. To everyone that came to visit, phoned, sent text messages, offered support or just thought of us during this time we can't thank you enough.

Day +20, Christmas Eve, Blake required another platelet transfusion and was then finally discharged to come home (weighing 9.6kg - incredible he had actually gained 200 grams through his ordeal - thank God for TPN). We had a lengthy wait for discharge meds but were entertained by the Holmes Gang who came to visit (minus Immie who can't be around neutropenic kids thanks to a bug she picked up in hospital during her own treatment). At this point we need to say a VERY BIG THANK YOU to Fiona & Jason and to their many wonderful & thoughtful friends (although now that Fee has been stalking you all on our behalf we understand if she hasn't heard from you all in a while LOL) for the delightful hamper of goodies and the Coles Myer voucher that they packed up for us (so that we actually had some food to come home to).

Dean had a mammoth task of packing up Blake's room and all of our things including the many Christmas gifts we'd accumulated over the 28 days we'd been away and admitted to the ward, as well as the room full of belongings collected at the Ronald McDonald House. The car was re-pack twice before finally squeezing it all in, the wagon was literally stacked to the roof and Kai and I both had to nurse giant Santa balloons all the way home because there was no way Kai was parting with them, but hey it was Christmas eve and we were coming home :)

We enjoyed a casual relaxing Christmas day at Grandma's with too much food and alcohol followed by a couple more days of just being home before we had to have Blake back at PMH for blood counts and review. On Friday 28th December, he was borderline needing platelets but the doctor decided to stretch it out a few days to see if his platelets engrafted on their own. His next appointment was New Years Eve (Day +27) and still he was bordering the level of platelets requiring transfusion. By Friday 4th January our clever little man had grown enough of his own platelets and didn't require any more transfusions. His next visit was on Friday 11th January where again his blood levels were fantastic, he was weighed and finally he had hit ten kilos (10.05kg). He is no longer neutropenic with his neutrophil levels being significantly high enough for us to get the all clear for outings, shopping, parties, playgroup and the many other things that Blake has missed out on for most of the past ten months.

Blake will be attending Outpatient Clinic weekly on Fridays for review, blood counts and dressing change (also on the unscheduled days when the NG tube is thrown up or pulled out and his broviac dressing becomes unsafe - already we've had a few of those days). We have not yet had a date set for follow-up x-rays or for removing his broviac (the plastic tube that was inserted into his vein way back at the very beginning of his treatment cycles which all of his drugs, fluids, TPN and blood products have been given).

For all that he has endured Blake seems to be doing amazingly well and we are just thrilled to have him home. His appetite has not yet returned and that will be a long drawn-out process, he is on NG feeds three times a day and continuously for ten hours overnight (anything that he does eat or drink orally is an added bonus).

Tuesday 15th January we enjoyed our first session back at Chidlow Playgroup and the start of hopefully some normality in our upturned lives! Blake has now exhausted all of his treatment options and any further relapse would be heartbreaking, he is a long way from clear of cancer or out of the woods, so please continue to wish him well. We still have many people asking 'is there anything we can do to help' and we appreciate every single offer. I have recently listed 'Bands for Baby Blake' on ebay and any sales of these would be a great help to us and to those of you that are eligible to donate blood I ask you to please consider doing so, Blake would not be where he is today without the generosity of those people that donate.

Hello beautiful people

Just a quick email to say hello and to give you an update on Blake, although I actually don't have too much report at the moment, which is fantastic, our lives have ALMOST become normal again :)

We are waiting on a date for surgery to have his broviac removed and his oncologist has said that she will do a routine chest x-ray when that happens. We will be keeping everything crossed that the x-ray is clear and that no more tumours appear. He won't be having any more PET, CT or Bone scans as all of his treatment options have now been exhausted and early detection would be of no benefit to him. If there is a clinical reason to or if Dean & I ask her to she will conduct further x-rays down the track but for now she wants us to just enjoy Blake for Blake and pray like hell that he can get through this next twelve months (the first year is the most critical for further relapse, but that's not to say it can't come back at anytime).

Blake appears to be doing very well, he is happy exploring the world with new found energy. He's not sleeping too well though and that's probably because he's not eating much but that's all par for the course and not unexpected. He gets to his feet but is yet to take any steps unaided, he gets himself up and then proceeds to tell you that he is 'stuck'. Blake is the best smoocher and gives the most wonderful and loving kisses, so from Blake... Tada and Mwah xxx

Just thought I'd pop in, say hi and give you an update on Blake...

We've had a few unexpected visits to hospital in the past couple of weeks. Blake has been a little unwell and has been vomiting a lot more lately, he has managed to bring up his nasal gastric tube with nearly each vomit, so we've had to drive to PMH (yes the three hour round trip) on several occasions to have the tube reinserted - it's almost like torture for poor Blake - to say he doesn't like it much is certainly an understatement!

Anyway our news update... Blake is booked for surgery this Friday 22nd February for removal of his broviac (the CVC line which he has received his Chemo and other fluids through). Although this is a fairly minor procedure in comparison to all that he has endured to date, we have very mixed emotions about the day. This signifies the end of treatment which should have us shouting for joy but as we have had no follow-up scans we are also facing the uncertainty of whether the cancer has spread any further since his megatherapy and stem cell rescue.

Our oncologist stated that Blake would have a chest x-ray routine to removal of the broviac, so we will have a very anxious wait for results of those pictures which we may or may not receive that day!

I will endeavour to keep you up-to-date with Blake's progress (http://tinyearthangels.com/babyblake.html)

Thank you so very much for the love, help, support and kind words over the past eleven months, it is appreciated more than you can know.

Love & Light - The Cahill Family xxx

Surgery went well, Blake's broviac came out without any complications, we arrived at PMH early on the morning of Friday 22nd February and completed the admission paper work before being directed to the Surgical Day Procedure Unit. After only a short wait I took Blake into theatre at 8.15am and we were called back to recovery just after 9.30am. We stayed a little while for observation and were allowed to take him home by lunch time. His wound site had to stay clean and dry for seven days, so poor Blake was still unable to have a proper bath or go swimming in the pool, but hey another week wouldn't hurt after waiting over 11 months!

Friday 29th February marked the first anniversary since finding Blake's tumour. Yes, we couldn't believe it either, a whole year has passed since the event that would change our lives forever! It also happened to be the day that Blake would have his blood counts and chest xray. We went directly to xray before going to oncology clinic where we sat in the waiting room with our hearts pounding waiting for our appointment. Blake's wonderful Dr Tina Carter called us in and could obviously see how nervous we were to hear the results as we didn't even make it into her room, she gave us the news in the corridor... I am extremely relieved to be able to tell you that Blake's blood results were good and his xray CLEAR!!!!!!! There was obvious scar tissue and small infection in the right lung but the image was certainly more clear than the one taken in November pre-megatherapy, considering all that his lung has endured it really did look pretty good!

So what happens next? That's the big question! We are now scheduled for a visit on Friday 11th April for a Cardio Echogram to monitor Blake's heart function to ensure that there is no evidence of damage from the countless number of chemo drugs that have been pumped into his little body. We can expect him to require Nasal Gastric feeds for the next few months (which will no doubt mean a few unexpected visits to Ward 3B for reinsertion of the NG tube). Within a month Blake will be allowed to start again from scratch with his immunisations (which ceased at four months of age once he commenced immuno-suppressive therapy). We will after April 11th, hopefully go to clinic only every three months, where we will hold our breath and again anxiously wait for xray results.

Blake has had an incredible journey and he has taught us a lot of things not only about ourselves but about our family, our friends and our community. We have so many people we want to thank but it hardly seems enough to just say thank you. We are sincerely grateful to every person that has helped us along the way over the past twelve months, from simple words of encouragement, to suppling meals and fuel cards, to help with financial aid and fundraising (every cent has helped) and for the show of support from all the people proudly wearing 'A Band for Baby Blake' (special thanks to Lance Rosol for being my first sale of bands on ebay to the United States). Our biggest challenge is to get through this next twelve months without any further relapse, so we ask you to please continue to hope and pray that our littlest man stays strong and healthy and wins his fight with the bastard disease.

We were back at PMH for six hours on Friday 11th April 2008 for Blake's haematology and oncology review. He also required a follow-up Cardio Echogram to monitor his heart function and just for good measure a last minute chest x-ray was thrown in too.

Blake's blood counts were all good although his electrolyte levels were a little out, a likely side-effect from one of the many chemotherapy drugs, he will now be on an oral solution of sodium bicarbonate up until at least our next visit to help boost his levels.

The beautiful Dr Carter conducted a physical examination and failed to find anything unusual, there were no swollen glands or lumps of any kind. Infact she seemed surprised and delighted at how wonderfully well our littlest man is recovering and decided on giving him a flu vaccination, which he bravely received with Grandma while I was off at pharmacy collecting his script (he will also be allowed to recommence his 0-4 years vaccination schedule after June of this year).

The results of the Cardio Echogram were normal, meaning that Blake's heart function has not been damaged by the extensive therapy he has endured. There were no changes in the chest x-ray results since the previous x-ray taken on 29th February, there is obvious scar tissue and abnormality or infection on the right lung post surgeries but certainly no evidence of new lesions or tumours... PHEW, what a relief!!!

Blake's next scheduled visit to PMH is on Friday 9th May for a review with his physiotherapist and his plastic surgeon, he will also have a further haematology review for follow-up of his blood counts. We will of course have the unscheduled visits for replacement Nasal Gastric tubes while Blake slowly but surely regains an appetite!

Today I leave you with my favourite new quote... "Never give up! This may be your moment for a miracle".

Blake is doing pretty well at the moment! We have had the usual cold weather snot, coughs and sniffles, and a week long mystery viral infection which had Blake to Swan Districts Hospital twice in that time, three days of 39+ temperatures and then a nasty red rash covering his neck & back, nothing that could be done other than letting it pass through his system. In the big scheme of things - no big deal - except Blake lost his appetite again for about a week and rapidly dropped weight. He is eating again now and has been without the NG tube for just over 3 weeks - WHOO HOO!!!!! I am doing the best I can to fatten him up before his next visit to PMH on July 4th when his dietician is going to review his weight (fingers crossed there is no turning back with regards to the NG).

I was anxious for days before Blake's oncology review on Friday 4th July and was glad to have some moral support from my wonderful friend Kymmy who made the trip with us. It took forever in pathology to take bloods, two finger pricks later (literally squeezing the drops of blood out) we were back at out patients to await the results. Usually that time drags and keeping Blake occupied is a challenge, but this week it flew by. We popped in to the ward to see Fiona and her gorgeous, smiley girl Immie, who had been admitted with a port infection and we also spent some time with Olly and her son Mikey (a ten year old local boy from Wundowie who has very recently been diagnosed with Acute Myeloid Leukaemia - AML).

We were admitted to Ward 3B Tuesday night to await a CT scan the following day. CT scan pictures and a subsequent ultrasound revealed two completely separate masses on Blake's (almost) entire right lung. The lower mass appearing to be tumour like, not unlike his scans prior to his surgeries last year, but much, much bigger. The upper mass appearing to present more like a cyst and also being very large in size. The cyst is severely restricting Blake's airway and it was thought that the most appropriate thing to do would be to eliminate his most imminent danger and drain the cyst of some fluid under General Anaesthetic (GA) to relieve the airway. Blake's Trachea is significantly compromised and he is at risk of stopping breathing at any time. Thursday would bring a further test (Echo Cardio Gram) to determine Blake's heart function and assess his risk for the cyst aspiration under GA.

On Thursday the head Cardiologist advised that he would not give Blake the ECG as he suspected that he was too at risk to even have the sedation required for that test. After several meetings and discussions with oncology, cardiology, anaesthetics and surgeons it was agreed that putting Blake through such a dangerous procedure would not be in his best interest and most certainly would not be a curative measure to his cancer. It is most likely that the cyst is also a malignancy and their are no further treatment options for the large tumour on the lower right lung. Blake would be at an extremely higher risk for having a GA as his airways are already compromised and he is basically functioning with only his left lung, to be intubated he would have to have this directed into his left lung only, which is a much more complicated and high risk procedure than a GA under regular circumstances.

Hi my name is Leah Couanon I am the webmistress to little baby blakes page it is with great heartache and sadness that i bring to you this latest update I just got a phone call to say that dear sweet Baby Blake passed away today, I would like to personaly thank all of you for all the love and support you have given to Baby Blake and his family and ask that you please continue to send strength and prayer to Cherrie, Dean and little Kai through this most difficult time. God Bless you All (((hugs)))

Little Angel Blake's Funeral will take place this Friday 1st August 2pm at Mundaring Cemetry a wake is to follow at the Chidlow Hall all are welcome to attend.

Please feel free to leave messages for Cherrie, Dean, Kai and baby Blake in the guestbook below

Blake is a happy, spirited, brave little man who has already endured much more than any one person should have to face in their lifetime and still he has a long, hard road ahead in his fight against cancer.
Family time for the Cahill’s is limited and invaluable, it is for this reason we are raising funds to assist in relieving their financial burdens and commitments during this difficult time.

An account for Baby Blake’s Fighting Fund has been opened at the Mundaring Branch of the Bendigo Bank here in Australia and we are appealing to anyone wishing to make a donation in support of Blake and his family to please do so into the following account.

Little Angel Baby Blake