Kahlilla Blyss's Journey -Kahlilla's Diary

Kahlilla practicing her birthing technique.

Eli's first night at home was stressful in that he was in chronic pain and he only slept for perhaps one hour. His umbelical stub was bleeding and looked very dodgy and we were worried that he had an infection and we tried hard to fight away any thoughts of rushing him to Kahlilla's hospital.

Eli's first day at home was a very happy one. He fed and settled and fed and cried and settled and fed and fed and fed. It has been so beautiful to witness his mother's infinite patience and love for her little man. The girls have been very helpful and very patient also, putting up with the attention required by their brother in these first few days.

Kahlilla and her beloved kittens.

Our beloved little man.

Granny Franny and Grand Old Terry with their beloved little girl. There is obviously no need to report on how Kahlilla is doing.

April 28

We have just had the most beautiful day.

Our son was born in the afternoon. An exquisite, perfect, gorgeous baby boy.

Please say hello to Eli George Bowker-Donahoo.

Eli (pronounced Eee-ligh) is named after Eli Creek on Fraser Island - one of the most beautiful places in Australia - Please go back in Kahlilla's diary to 5th December 2006 to see what we mean.

Nell managed a few smiles in between the excruciating contractions.

I am so proud of Nell who endured so many painful contractions during her 4 hour labour until she pushed Eli into my waiting hands.

Kahlilla and her Nanny cut Eli's cord and it was just the most beautiful moment ... cut short a little when Eli failed to breathe and had to be whisked across to the midwives at the machine that goes PING.

After a few seconds, he coughed, spluttered and cried and started turning from blue to pink. He was then placed on my chest and feeling his perfect skin on mine was a sensation of sheer bliss.

After delivering the placenta, Nell took hold of her boy and she just melted. Tears and smiles are a beautiful thing.

What an incredible sight - Gorgeous mother and child

What a joyful baby

Dad is totally stunned by his new boy

Kahlilla giving her little brother some skin

Our friend LuLu, who was Nell's loving dousha during the labour and birth.

We now have another fighter helping Kahlilla

Loving sisters loving their brother

Proud Grandpa

April 27

More happy days on Phillip Island with friends and family.

"Do all that you know, and try all that you don't:
Not a chance must be wasted today" ... Lewis Carrol

Nell is the one in hospital tonight, having some gentle persuasion applied in order for Sputnik to enter the world prior to Kahlilla's next hospital visit.

April 25

Great Days for our family and friends. Kahlilla is fit and well and brimming with happinss. Although she is easily fatigued at times, there is still plenty of desire to be energetic.

Feel the love

She spent ages running around Pop and Col's office with the Mellowman, and she spent ages running around with her nice friend Kaitlyn also.

We rushed to the beach to catch the blazing sunset

We have agreed that despite an exceptionally healthy diet, we are not doing enough. After consultations with Prof. Avni Sali and Mike the Medicine Man, Kahlilla's diet has changed a little.

We are still eating mainly organic fruit and vegies, however there is more emphasis on juices (carrot, beetroot, apple and red grape), more Vitamins C and E, and a reduction in sugar and other high GI foods.

We are aiming for a reduction in certain oils and fats (less Omega 6 and more Omega 3) and there are increases in Calcium, Magnesium, Selenium and B17. We are also trying a wheat germ extract called Avemar as well as various Mannatech products(Glyconutrients). Plenty of filtered alkaline water is also on the menu.

The new improved diet is aimed at :

- increasing the efficiency of all cells (including the tumour cells ability to make the most of the chemo),
- improving the immune system at all times, but especially during and after chemo
- raising the alkalinity of the body
- Creating an environment in which cancer cells struggle to thrive

We have little doubt that Kahlilla's vitality in the face of chemo can be largely attributed to her diet. Her skin is perfect, her eyes clear and she is literally glowing.

On top of all this, she is an incredibly loved child. With the goodness she receives from her family, her friends and all of you fantastic people around the world, Kahlilla Blyss Donahoo is well equiped to continue the fight.

April 23

Kahlilla slept late, then woke up full of smiles, full of energy and no pain whatsoever. Not a bad start to a fantastic day at home.

Cheeky kid with oak leaf

The afternoon was spent at the pool and Kahlilla, Mum and Sputnik all went for a swim, which was just great. I think Mum appreciated being buoyant for a while and not feeling the weight of the, soon to be born, baby.

Lill spent a few hours at her Nan and Pops before returning home for an energetic night. We have to start getting this kid into bed earlier.

April 22

An odd, mixed day today. We waited ages for Lill's final dose of chemo and then we had a yukky experience with an oil that dissolved the sticky on Lill's sticky but also made her skin sting. Her biggest fear at the moment is when she has to remove the sticky dressing around her port needle, so we tried a natural orange oil. We must further refine the dressing removal strategy.

Once the needle was removed, we were told that she would probably need a blood transfusion because her reds were low 3 days earlier. Hmmm.... they could have told us before the port needle was removed. Nonetheless, we prepared for an 8 hour extension to our hospital visit.

Lill had a quick fingerprick to confirm her haemoglobin levels and were amazed to find that they had actually risen by 10%!!! After 3 more doses of chemo her reds should have dropped further. We were quite thrilled by the increase in the face of chemo, and even more so since the 10% rise placed Kahlilla above the threshold for a blood transfusion.

We sprinted to the car.

We had a beautiful evening having dinner with LuLu, Bells and Tolidude. Lill was happy to see her friends, her sister and of course, her kittens. Back at home we tied glowsticks to the cats and switched off all the lights. It was so much fun to track them as the played with each other.

April 21

After her chemo this morning, Kahlilla and her Great Godmother LuLu ascended the Eureka Tower and looked out at the world from above. Lill was a little scared but she said she felt safe.

Top of the world (Well top of Melbourne anyway)

The next step was to move into the sliding room. The whole room slides out away from the building, then the floor changes from opaque to clear. Everyone screamed, except for Lill and LuLu.

These girls are scared of nothing

In the evening, Mum came to visit and Kahlilla was reet chuffed (absolutely thrilled) after being away from her Mama for a few days.

The mother and child reunion is a beautiful thing

April 20

Day 3 of Part 2 of Round 1 is over, and Kahlilla has proven once again, that she is just a champion.

Part 2 of Round 1 is 5 days of Irinotecan, given over 90 minutes during a day visit, meaning that once it is infused into Lill's central line, she is free to go.... wherever she pleases. No overnight stays for this kid.

It is a long drive back to the island, so we have decided to stay in town at Ronald McHouse during the 5 days and radiate outwards to various sites after the chemo sessions.

Poppy took Lill around the market on the first day, along with plenty of time at the playground ... even after dark.

No matter how high she swings, Kahlilla just is not scared

The second day was spent at her cousins' house. Kahlilla was so pleased to see Lewis and Gareth and Charlotte again, and even more pleased that she could have a sleep over.

Day 3 was spent with Terry and Granny Franny, where we made hilarious shaddow puppets against the fence using the setting sun as a huge torch.

Shadowers

Kahlilla is OK at the mo, although she is easily fatigued and seems rather irritable at times. There has, however been no need for pain relief, which is a superb sign indeed.

She is just a lovely bundle of joy with the warmest hugs and a sparkly eyed smile that seems to be switched on more than ever. Mum has had a quiet weekend at home relaxing with Indi, cooking up another bundle of joy. Only 2 weeks to go, so could be any day now!!!

April 17

Kahlilla had a beautiful day with her Mum and her Nan today. She is still experiencing pain in her back, but it seems milder than the past few days and easliy managed with paracetamol.

These chefs made the most delicious chokky balls ever

Another difficult evening jobbie, led way to another joyful evening with a very happy child, with Kahlilla playing shaddow puppets until all hours.

April 16

Kahlilla was gently awoken this morning by her beautiful friend Arabella. It was the second best awakening ever... refer April 13 for the best ever.

Last night was a good one for Kahlilla who slept right through without a single tear.

Lilly and Bells had such a wonderful day together.

Gorgeous friends (A little crazy but gorgeous nonetheless)

Before we left hospital a few days ago, we encouraged Lill to have her port needle taken out. It was very traumatic for Kahlilla, but the incentive was that we would be able to go the swimming pool.... and this afternoon, we did just that.

Sore legs are not a problem in the water

On reflection, Kahlilla is a lovely little girl

Lilly and her Collie

Kahlilla has been constipated for over a week and we have been unable to tell if her recent tummy and back soreness is due to the tumour, the chemo, or the growing, stubborn jobbie.

Kahlilla has regained her appetite thanks to Mum's yummy organic food, so the input has been exceeding the output. Something had to give and tonight was the night. After a long struggle, many screams and a few tears (of her eyes, not her wee bum), Kahlilla was feeling so much better. In fact, she was a different kid. Happy, running and gleeful once again. Let's see if the pain stays away now.

April 15

Kahlilla had a dodgy night with back pain and pain in her right leg... hmmmm... that's a new one. She made it through the night OK with nothing stronger than paracetomol and lots of cuddles in between Mum and Col in bed.

She awoke a little sad and sore but the kittens soon brightened her day. As she watched Indi prepare for school, Kahlilla decided that she would like to go to school today also.

Kahlilla was so happy to see her school friends and she had lots of fun

Lill ran as fast as her tired wobbly legs would allow, during practice for the school sports this week

After school, Lill alternated between bursts of energy and tired painful feelings. She did manage a quick play at the park and an even quicker bounce on the trampoline.

We think her back pain is better than last week, so perhaps her overall lethargy is due to the recent chemo.

Rest now little princess, you will feel better tomorrow.

April 14

Another good day for Kahlilla. Intermittent pain is still being experienced, mainly in her back, but there was still enough drive to have a swing at the park.

Lill and her Godmother LuLu

Tonight, we are back at Phillip Island where Poppy has prepared a yummy dinner for us. Kahlilla is is in OK health and excellent spirits. She cannot wait to return home to cuddle her kittens.

Her first round of chemo is over and Kahlilla is only experiencing intermittent back pain... Her tummy and left leg have been feeling good. So there have been lots of smiles and happy times in between occasional pain and pain medication.

April 13

Colin was awoken at 9am by an angel singing to him from her hospital bed. Looking up, he saw a huge smile on Kahlilla's face as she sang a song that was not unlike this....

Good morning Collie... Time to wake up now.....lah lah lah

After this incredible welcome to the day, Colin had a great day with Lill, escaping from the ward as often as possible. As she waited for her Mum later in the day, Kahlilla drew a great picture on the whiteboard.

The proud artist

April 12

Not much change over night. Sputnik is still in Mum's tummy and Kahlilla is still in pain - mainly in her back. Codeine has now been added to the arsenal. No bomits overnight, however which is a positive sign.

We are assuming that the pain is due to the tumour, not the chemo. So we are waiting, hoping for the pain to subside as an indication that the chemo is doing its job.

Kahlilla started to come good in the evening, asking to go and play in the park. It was getting late, however a request like that could not be turned down.

Happy kiddo, swinging in the dark

April 11

It was a tough night for our little girl whose back was really sore and the various pain medications were struggling to alleviate the discomfort.

True to recent traits, Kahlilla awoke feeling very bright and she even left the ward to visit the park with her beautiful Mum. Things turned bad for Lill as the back pain returned and she started vomitting, so they hurried back up to the ward... a little too quickly it seems because Nell had a little fall. Nothing serious however it has started some strong, regular contractions.

April 10

Kahlilla slept late after an uncomfortable night of back pains. Once awake, however, she felt better and managed a smile at brekky as she taught Dennis the alphabet.

Kahlilla the teacher

We resisted the temptation to have another day at home, and headed for the hospital. Kahlilla is not going to get better without treatment, so we want to get it started before things worsen. We do not want her to experience any pain that can be avoided.

The hospital were a little unprepared for us, so we escaped to the park grabbing a final look at freedom before Lill is tied to a trolley. Kahlilla is really happy and free of much pain.

Kahlilla started her treatment in the afternoon after a new and very traumatic needle was inserted into her port. The Temozolomide was in the form of 3 tablets which were swallowed without batting an eye, and the Irinotecan was dripped into Lilly's bloodstream over one hour.

Kahlilla slowed down in the evening as her back became sorer. Our good friend LooLoo is looking after Lill tonight.

April 9

Kahlilla had a restful night spent with her Poppy and without the need for pain relief. When she arrived home, Kahlilla was running and smiling and aching to bounce on the trampoline.... so.... we let her.

The hospital will just have to wait one more day.

Mum was very weary, so she gratefully returned to her pillow, while Kahlilla played on the trampoline making plans with Colin. It was beautiful day, so we made a list of things to do, including:

-Play the Rolly game and Sparkos on the trampoline

-Watch an episode of the Goodies

-Get our feet wet at the beach

-Go to the penguins

-Go to the fun shed

-Go to the Maze Place

-Go to the playground and play for a while

-Dinner at the pub

-Play with the kittens

Things, however, did not go to plan...

There was no problem with the Rolly game and Sparkos. This is where Colin rolls around the trampoline trying to bowl over any kids that get in his way. Kahlilla is the meantime, sprints around in her socks, generating static electricity. Then she touches Colin (normally on the neck where it hurts most) giving him a Sparko...Ouchie Mama!

The episode of the Goodies (Kitten Kong) was a blast.

There was no problem with a quick walk along the beach and getting our feet wet.

The problems started at the Penguins where the evening session of penguin watching was about to start and the day centre was CLOSED!

Then both the Fun Shed and The Maze Place were CLOSED by the time we got there

We decided to implement the emergency plan, which was go bowling.... which we did.

Kicking butt with her pink bowling ball

Then there was a huge albeit brief amount of fun at the playground, prior to a yummy dinner at the pub.

Once back at home, Kahlilla curled up in bed with her kittens, ending a perfectly planned day.

April 8

It was a rough night for Kahlilla with acute pain in her left leg.

She woke up feeling much better, so Mum seized the moment and had a gorgeous little dance with her girl.

The rest of the day was non stop with Auntie Georgie and Charlie.

Fun times at the beach

A glamour photo shoot on the trampoline

Feeling her very active brother

April 7

Aunt Georgia and Charli came to visit today and the girls had so much fun together, while the grown ups prepared the nursery for Sputnik who is due in 3 weeks (but could hatch any day now).

Indi organised a superb picnic

Lill and Charli enjoying the leafy view from the girls' new bedroom (Formerly the study)

Lilly and her loving Aunt Georgia (Could these two possibly be related?)

Kahlilla's left leg started hurting again today. With recent emergence of the new tumours, the leg has been somewhat forgotten! Kahlilla adopted her usual limp and carried on with another hospital free day. She is a tough one is our Lill. She complains very little and generally declines the offer of pain killers until she is really suffering and the hurt is showing in her face.

So why was it a hospital free day?

The oncologist spoke to us this morning and invited us to make the most of the sunshine while Kahlilla's pain is under control. The tumour is not going to do any more harm given a few more days without a chemo attack, nor will it be any less attackable.

The fear is that the chemo will be ineffective and also make Kahlilla ill, hence the encouragement to enjoy this day at home (and hopefully tomorrow also)

Today was a lovely, fun loving and affectionate day spent with the girls. Kahlilla is just a joy, laughing and singing at every opportunity. Imagining life without her is absolutely unbearable ... so we are doing our best not to.

The time is now. Hug your kids, parents and friends. There is only this moment afterall.

April 6

Kahlilla is enjoying every second of her weekend at home, and she stoically endures the pain as the pain killers wear off. Heat packs and warm baths bring some comfort.

Waiting for the pain to subside again

Following a sudden burst of energy later in the day, it was unanimously decided to go to the last performance of the Island Circus!!!!! WHY NOT??

What a bunch of clowns

After the circus, there was plenty of enthusiasm for a quick ride on a miniature horse!!! WHY NOT Again??

Kahlilla adored Lucas the horse and her smile never waned

April 5

Kahlilla had a good night last night. She has not vomitted for 24 hours and is requiring less pain control medicine than yesterday.

Playing with Play Doh and a smile

The chemo option remaining for Kahlilla is a blend of Irinotecan and Temozolomide and is still in its trial stages although it has showed some promise in kids with various types of relapsed neuroblastoma. Janie in America is in remission after this treatment and that is good enough for us.

The hospital could not organise anything until Monday, so we kidnapped the kid and took her home as we can observe her and administer pain relief too you know.

The first priority was to cuddle the kittens

The second priority was to play with the kittens (The Burmese would have to be the most patient breed in the world)

The third priority was to share it all with Indigo

In the evening, it was over to Nanny and Pop's house for bike rides and chalk drawings.

It started with an enormous rainbow

Then Kahlilla had an "eye" dea

All of Lill's faces have smiles

Proud artist

After dinner, the music was turned on and it was time to dance.

There is a little video of the dancing. The movie is 4MB, so if you have a slow internet connection it may take a while to download.

Click here to play the file. Or simply right click the link and click on "Save Target As".

Proud air guitarist

April 4

The news this evening is not that great. Kahlilla had a CT scan today and the results revealed that the remnants of the original dormant tumour around her left kidney has grown significantly and now envelops 2 large blood vessels and is pressing against the ureters from both kidneys.

There are not many options for Kahlilla and there is elevated risk of kidney failure if the tumour continues to grow.

There are also 2 spots on/in her liver suspected to be neuroblastoma tumours also.

We are taking a night and a day to consider options and risks, and the likely course of action is to start a chemo treatment on Sunday. This treatment is a stage 2 trial and looks like her best hope.

What is there to say?

Please give her your all. Your prayers, light, well wishes, zen, positive energy and love.

Our glowing Princess Kiddo

Enjoy this moment beautiful people.

April 2

As recently mentioned,"... there is never a moment's rest in our little world of late:

Kahlilla is lying in hospital this evening with her Nanny watching over her.

She started to become poorly yesterday, with plenty of vomitting and chronic back and tummy pains. The local doctor was concerned about her yesterday but she has worsened overnight, so today he sent us to the Royal Childrens Hospital.

It was a wild drive in to Melbourne with 140kph winds, trucks tipping over, bridges closed, freeways blocked and power out. We have to cross 2 bridges to get to Kahlilla's hospital, so the alternate route took us across town with each set of traffic lights not working.

Lill was so patient, holding onto her pain as we negotiated the unfamiliar roads. We piled out at the emergency dept only 30 minutes later than expected.

So Kahlilla has had blood tests, X Rays and Ultrasounds, so hopefully the diagnosis is something that is easily fixed.