Homeward bound

Yesterday Caitlin had a clinic appointment, where we were told, WE CAN GO HOME!! I waited until this morning to say something because we haven't told Logan, it's a surprise. We will just turn up after school to pick him up.

Tuesday next week she has a blood test and check up at Hastings Hospital, then the following week it is back to Starship for a check up. 

If anyone knows how to pack 4 suitcases into 3 you have until 10 to let me know. We have accumulated so much stuff (or should I say, Caitlin has accumulated so much stuff!) 

We look forward to catching up with everyone soon!  ;-)

Roll on tomorrow

Our week at RMH has been quite eventful. We got to see the filming of my kitchen rules NZ, this was at the main RMH. Caitlin got interviewed and may end up on TV. We met 2 of the judges and a few of the contestants. She also had her photo taken with some of them. (I can't post them sorry). Then we got to eat what they cooked. It was a really good afternoon!!

We have been on a couple of shopping excursions, -  shoes may have been bought!

Caitlin has had appointments at the hospital, bloods etc. she needed another NG tube, this one made 10 in total.

Tomorrow she has another appointment and I'm confident we will be allowed to go home! Roll on tomorrow!!

Christopher came to visit for a couple of days, this was a surprise!

Today's the day!

Today's the day!! Yesterday we were told if Caitlin had a good night we were allowed to go to RMH today! Well she had a good night. Now we are waiting for the doctor to do rounds so she can be discharged. The last couple of days have had a couple of little dramas. On Tuesday her NG tube blocked, the nurse tried everything to unblock it, she even used coke but it wouldn't budge so it had to come out and another one was put in. Then yesterday she did her party trick where she vomits it up!!, and another one had to go back in!

Also yesterday Caitlin got a visit from the Hat Ladies, this is an organisation that supplies hats, beanies, buffs and wigs to people who have lost their hair to chemo. You get a certain amount to spend over 3 years. She is looking pretty good in her beanies and buffs!!

Over the last couple of days word has gotten around that it's close to Caitlin getting out of hospital, she has had a lot of nurses come in for a chat, a hug and to tell her the only time they want to see her is at clinic or on the street!! They will have to find someone else to fight over now. (They all liked nursing her).

It has been a long hard month but finally the light is at the end of the tunnel.

On the brighter side

Today we shifted room again, we are back in the transplant unit. It's a bigger room, not the one she was in originally though, we no longer see the helicopters land but she is happy in here. Caitlin was more interested in who got out of the helicopters than watching them land.

It has been a nice weekend a few of her friends have been up to visit, bringing the latest gossip!! and lots of smiles.

Logan named Caitlin's catheter bag

One of the many uses for a glove!

Guess who?

Guess who?

The saga continues.........

And so the saga continues.  For about a week and a half Caitlin has had these strange looking things on her legs. No one has been sure what they are. A dermatologist came for a look and she seemed to think they were chicken pox. Swabs were taken to check. Another lady came to have a look, she deals with infectious diseases ( sounds ominous), she seemed to think they could be chicken pox also. Because of this we were kicked off this ward and sent to level 5 (the dungeon) because of the risk to the other kids. Turns out they weren't chicken pox and we came back up to level 7 (which we now call the penthouse suite). We call it out sleepover on level 5.

Caitlin seems to have turned a corner and feels much better. Monday the catheter is coming out!!

From good to not so good

Things haven't gone as we had hoped. As I said Caitlin has haemorrhagic cystitis which has been caused by the BK virus. There's not a lot you can do to get rid of it, it's just a matter of making her comfortable and riding it out. On wednesday 2nd the decision was made to give her a catheter, this was so she could get some rest and to help with the pain. It wasn't the most pleasant experience but it was necessary. This one kept blocking so on saturday it was removed. They gave her a few hours rest before a new one had to go back in. This one kept blocking also, then her pain became unbearable. So at 8.45 pm on saturday night Caitlin went into theatre to have another one put in, this one has its own flush etc. while in theatre they removed a lot of clots that were causing the blockages. Before she went into theatre she had to have an ultra sound, they called to say they were ready for her to go down and have it done, but we couldn't leave, the ward had been put on lockdown. The fire alarm was set off and no one knew why. It turns out someone doing some work on the ward accidentally set it off. That was a bit of excitement to break the day up!

She has had a few blood and platelet transfusions also another ultra sound.

So it's just a waiting game...........

Still in hospital

 Well, this is taking longer than we had hoped. It is now day 9 back in hospital and we still aren't sure how much longer we will be in here. Over the past two weeks Caitlin has had to put up with a lot of pain and discomfort, she is back on a PCA pump so she can give herself pain medication. She has had two ultra sounds an x-ray and another blood transfusion. She also doesn't get much sleep. All through this she has shown a lot of strength, tolerance and bravery. I am very proud of her. Today she has been given a bravery bead which is well deserved! Fingers crossed everything is resolved shortly.

Caitlin has been doing French knitting, the plan is to make a beanie. So far it's about half I meter long, lots to go! Watch out for the photo when it's finished.

Hit a small bump

Well we have hit a bump in the road. Caitlin is back in hospital, they have said for at least 48 hours. She has haemorrhagic cystitis, so needs lots of fluids and pain killers. She's back in the room she had originally. I don't think we will decorate it as we aren't planning on staying long.

 She managed to do her "vomit up the NG tube" party trick again so another one has to go in. They will do this under sedation as they don't go into her stomach easily.

She is currently watching random stuff on YouTube, which is giving her a giggle!

Our first week at RMH

Our first week at RMH has gone quite quickly. Caitlin had clinic on Monday and Thursday. Now she has to come in each day for IV antibiotics to get rid of a pesky infection. She has also started on steroids, she has mild GVH. This is all quite normal though. She is doing very well and is managing to eat a bit more.

This afternoon we are going to a mid winter christmas party being held at the other house, might get to see Santa!!

I forgot to mention, the transplant room we have at RMH is the same one Logan had when he got out of hospital. 

Out of hospital

We are now at Ronald McDonald House, and it is great. What a
mission it was to move though. Caitlin had accumulated so much stuff!!

She is doing very well. Tomorrow morning we have to be at the hospital
early for a blood test and to have a check up.
She is managing to eat very small amounts, nashi pears are a favourite at
the moment. Energy levels are improving also. It's amazing what a
couple of days out of hospital can do.

Here's Caitlin and Logan enjoying a game of Jenga.

RMH here we come

Great news, Caitlin's counts are doing really good, so good
it looks like we will be going to Ronald McDonald House on
Friday!! That is when she finishes her course of antibiotics.
All her medications except for one have been changed to oral,
I have started giving them to her through her NG tube.
Roll on Friday!

Leaps and bounds

Caitlin's transplant has been full of ups and downs, we are now on

the other side of a down. Who would have thought a tube up your nose

could cause so much trouble. 3 tubes later and all is well.

Her morphine pump has been taken away, she no longer needs it.

Her white cell count is coming up nicely, but the best news of all came

today, she now has neutrophils! this means she is getting an immune system.

It also means it shouldn't be too long before we can leave the hospital and go

to Ronald McDonald House. Tomorrow she starts taking her anti rejections

orally, that's a step closer to leaving also.
                                          

Another wasgij has been completed.

Auntie Caitlin got to spend a bit of time with Fleur, that put a huge smile on her face.

Day +13

What a day!!!! We have white cells!!!! the count this morning is 0.13

When she can keep her neutrophils at or above 1.0, we are out of here!!

Waiting, waiting

Thought it was about time I updated the blog, having been asked a few times
when the next post is happening.
 I was hoping to have good news today, we have bets going as to when Caitlin's counts
 were going to come up. I thought today was going to be the day. Caitlin has a calendar
on her wall and some of the nurses have put their name on the date they think it will happen.
There's a chocolate bar in it for the person who guesses correctly. Caitlin thinks tomorrow.
For the last four days she has had a constant fever and her blood pressure is all over the
show. Then in the middle of the night she does random things and the doctor gets called
to come and review her. 2.30 the other morning she was put on a heart monitor then at
4 am a lady arrived with a portable x-ray machine to give her a chest x-ray.
12.45 this morning we had another visit from a doctor, I think she just likes to keep them
on their toes. She has another infection in both lumens of her Hickman line.
Today was her last day of chemo yaaaay!! Since the last post she has had 3 platelet
transfusions and 2 blood transfusions. Everything seems to be going to plan.
So now its a waiting game!

This has been our project for the last
3 and a half days, even the nurses
would stop to put a few pieces in.
 Caitlin now has a thing for wasgij puzzles.
It has now been pulled apart and the next
one has been started.

                                                                 
   

                                                                   

Jasmine and her family came to visit for the weekend.Caitlin was really happy to spend some time with them. They were showing the nurses how you make loom band bracelets.

Jasmine helped do the finishing touches on the puzzle.

 In the background you can see some

of the bunting her class made, it has really brightened up her room. Everyone comments when they come in.

Here is Amber, Caitlin and Jasmine wearing their very cool matching beanies.

Day +1 - +5

I have found out a few things about Caitlin in the last few days
1. Be careful putting a thermometer in her ear when she's asleep,
    she must have been dreaming when the nurse put it in her ear and
    she took a swipe at her. (No harm done though)
2. She is a very graceful vomiter (more than one nurse has said this).
3. She has shown strength I never knew she had. Accepted what is happening
    to her without complaining. Things haven't been easy for her, but she still
    has a smile for whoever comes into her room. I am very proud of her.
4. She is a card shark!

Side effects of the chemo are starting to happen now, she has mucositis which
is inflammation and ulceration of the digestive tract. So she now has morphine
constantly and is also able to give herself a bolus when she needs more.
She has had two more platelet transfusions, one of them was today. Her NG
tube blocked last night and they couldn't unblock it so she had to have another
one put in this morning. They couldn't put it in until after her transfusion as her
platelets were too low. Caitlin wasn't very happy about having another one so
the nurse offered to put one in me!!! so I could see what it felt like. I was just
preparing myself for it but Caitlin said it was ok I didn't have to do it.
Since day 0 she has had two more lots of chemo, two more to go, then thats
the last of the chemo.
A big thank you must go to Jasmine and her family, you manage to put a smile
on her face everyday. Jasmine, Caitlin is lucky to have you as a friend.



 

Day -1 - day 0

Day -1

Because of all the fluids Caitlin has been getting to protect her bladder from the 

chemo, she has started holding onto fluid. She is starting to look like the Michelin man,

so they do what they do best and give her another drug to help get rid of it.

Works a treat though.

Because she has an unrelated donor she is at risk of graft vs host disease, so she has

now started taking anti rejection drugs. She will have to take these for a while yet.

Day 0  May 22nd

What a day! It almost didn't happen today! Someone from New Zealand (not sure who) went over

to Germany to collect the bone marrow that the donor kindly had harvested on Tuesday. 

This was a surgical procedure for her, and brought it back. It arrived in New Zealand at

10 am this morning, it then had to go to blood services to get the red cells taken out. This

took longer than expected. They don't like doing the infusion too late in the day, they said

if it wasn't going to be here by 7 pm it wouldn't happen until tomorrow morning. At 6.30 a man

arrived with the bag of fresh bone marrow and everything went to plan.

But first, this morning Caitlin needed a platelet transfusion and a blood transfusion. 

This is the platelet transfusion.

                 


           This is the blood transfusion

Caitlin with her new bone marrow

Here is the bone marrow going into their new home.

It can take around 10 - 14 days to show signs of new cell growth.

So now we wait!

The new hair do

This is Michaela on the left who cut Caitlins hair and Kelly on the right who painted Caitlins nails and did some window art. They are from Blaze hair in Newmarket.

 Michaela cut Caitlin's hair in stages, this is half way through.








And this is the finished product. She looks absolutely gorgeous!!

 

Ups and downs

Its been an up and down few days. Saturday night Caitlin got
quite sick and ended up vomiting up her NG tube, they left her
for the night but another one had to go in the next morning.
She is currently on 3 different antibiotics treating the infection in
her line, all is going well there.
Saturday night was her first night of another chemo, so from
12 oclock on saturday they started hyperhydration, this helps
protect the bladder from the chemo. That means she has a lot of
fluids going through her Hickman line. Everything going in, and
going out is now measured.
Doug and Logan came up for the weekend, Caitlin and Logan were
comparing notes. The scar on Logan's neck is longer than Caitlin's,
she told him they practiced on him. Logan managed to make Caitlin
laugh with his latex glove antics. He put one on his head and over
his nose then he blew it up with his nose. I tried putting the video
of  it on the blog but as it turns out I'm not that clever.
Today has been a big day, she is having two different types of chemo
and she got her hair cut. It was suggested we cut it, because it is
so messy when it does fall out, it ends up in your eyes and mouth and
all through your bed. Just really uncomfortable. I contacted a salon
and they were more than happy to come to the hospital and cut her
hair, and on their day off! Michaela and Kelly from Blaze hair arrived
with nail polish and purple hair colouring. Caitlin now has purple hair
on one side. It comes out after about 4 washes. I will put some photos
up later.
Today is another big day, she starts the day with a blood transfusion
we are just waiting for the blood to arrive. She is also having two types
of chemo again. Today is day -2, Thursday she gets her new cells!

NG tube insertion

Wednesday night Caitlin started vomiting, she got a fever and ended up
with tachycardia. Blood cultures were taken and it turns out she has an
infection in her Hickman line, they put her on antibiotics as a cover until
they knew what bug it was. Today they changed the antibiotic because
the bug was still growing. Then this afternoon they changed it again when
they got the results and they now know what it is. Caitlin's nurse today said
its the second time she has come across it in all the time she has worked here.
Today being a rest day from chemo, they decided to put her NG tube in. The trick
with this was to drink some water through a straw, it helps it go down. Caitlin did
very well getting this done.Tonight she starts getting fed through this as she has stopped eating.
She can drink but food is definitely off the menu. The dietitian has given her some
nutritional drinks, they taste nice.
I forgot to mention, Caitlin's room is the same one Logan was in, its the
good luck room!

 This is the NG tube before

This is the NG tube after, we may bling
it up a bit when she is used to it being
there. At the moment it feels strange at
the back of her throat.

First few days in hospital

Monday is called day -10, her first day of chemo. It took 2 hrs
to run its course. How its works is: Tuesday is day -9, Wednesday is day
-8 and so on until we get to day 0 which is the day Caitlin gets her
donor cells, then every day after that is day +1, +2 etc.
Today is her third day of this chemo, one more day to go then she
gets 1 rest day before the next one starts.
Today hasn't been that great a day for her, since about lunch time she
has been feeling quite unwell. All she feels like is juice.
One of the hospital school teachers came visiting today, just to introduce
herself, half an hour later she came back with some work for Caitlin to do.
That kept her occupied for a little while.
Her room is looking like her own now, we have put up some posters etc
giving it a person touch. I never thought I would ever be sharing a room with
One Direction

This is Caitlin getting her first round of chemo

   

This is how the chemo arrives, its always
in purple containers the nurses wear purple
gloves and gowns also

Our first few days

Wednesday started with a blood test, once the results came in we saw the doctor.
She checked Caitlin over, we discussed the treatment then went on our way.
Thursday we had to be back at the hospital at 7.30 am to prepare for surgery,
originally she was on the afternoon list but that was changed to first on the list
for the morning. At 8.45 Caitlin was put to sleep then at 10.15 I went with the
nurse to recovery to pick her up and take her to the ward where we had to
wait another 2 hours before we could go back to Ronald McDonald House.
The surgery went really well, she woke up really quickly. The recovery nurse
said she crawled to the top of the bed and it was lucky she was there or Caitlin
would have fallen out. The bed had sides but no headboard. Being in hospital
will be interesting as Caitlin is a sleep walker, we may have to chain her to
her bed. Friday we had to go back to the hospital to have her dressing changed,
I had to sign consents etc. So now we have the weekend off. Monday we
check into the hospital at 2pm to start chemo.

This is the Hickman Line, it went in through the jugular vein and ends up at the top of the heart.
Her medication will be given through this, also blood can be taken out of it.
Caitlins blood type is O-, her donor is A+. Caitlins blood type will change to her donors
blood type.

Time to pack

Boy time flies! January we had the delay, at the time 3 months sounded like
forever. But next week we go! We fly out Tuesday afternoon. Wednesday
morning Caitlin has her first appointment, bloods first though. Thursday afternoon
she goes into theater to have a Hickman line inserted. Friday is a pre-admission check.
She gets the weekend off, then Monday we check into Starship- (Club Med -ical)
when chemo starts. We stay at Ronald McDonald house until then.
Last week she had to have her viral serology done, this is where they test for
everything known to man kind! They took 8 tubes! She didn't feel a thing.
I suppose we should start thinking about packing...............

To Auckland we go

We were finally given a date that Caitlin had to be at Starship to start her treatment. This was the 28th
January, ready for her first appointment on the 29th. She had a blood test where they took 6 tubes out.
To cut a long story short, on the 31st January Caitlin went into theatre to have a procedure done that put her at risk of infection. She had to go on antibiotics for a week which delayed her treatment start date by two weeks.
Then while Caitlin was in theatre we were told the donor was unable to make the new dates for her
bonemarrow harvest, that she is busy until the middle of march. She is still very committed in being Caitlins donor but has something she needs to do. What we don't know.
The donor is from Germany.
Also Caitlins specialist is away in April. We had the option of another doctor or we could wait. They
said a month wont make any difference if we wanted to wait.
So the plan is, March I take her up to sign the consents etc, then towards the end of April she goes back
up, has her hickman line put in and starts chemo. When its time for the new cells the specialist will be back
to oversee.

Getting put to sleep for her operation

In the beginning

On the 20th February 2012 Caitlin had her first bone marrow aspirate and trephine done at
Starship Childrens Hospital. On the 27th February we found out she had Myelodysplasia also.
 Logan had a transplant in July 2011 for the same thing.
Since then she has had another 3 aspirates and countless blood tests.
She has come a long way with her bloods tests. What used to stress her out has now become second
nature. Its easy to get used to when you have them fortnightly. She has moved on from finger pricks
and now has them out of  her arm.

Caitlin getting a finger prick blood test

What's in a name?

Caitlin at Mister D for her 12th birthday

What's in a name?
Caitlin rides with allstars - the ride is her journey with Myelodyaplasia, and the allstars are her beloved shoes, they go everywhere with her.