End of Week 8 of treatment.

Friday, October 31st, 2008

So this has been a fairly stressful week due to the central line drama, however it has also been full of lots of good moments too…  On Thursday Mia, Harvey and I went over to Southampton and dropped in to Piam Brown Ward for some Halloween activities provided by John Lewis.  More arts and crafts Mia?  “YES PLEASE”.

Both of them had a great time and got a few sweets too, then we headed over to CLIC Haven for our overnight stay and they both indulged in some computer/PlayStation activities.  We ordered Pizza for tea and watched a movie before bed, it was a really nice evening and fairly relaxing for me as well (thanks kids).

Today Harvey went to a sibling group with 6 other children and they had fun making masks and badges and eating more pizza for lunch.  Mia was not having such a great time she had an anaesthetic (gas this time which she did not like!) to remove her line and administer her intra-thecal chemo.  The chemo bit went smoothly but one of the nurses informed me that the line removal was quite tricky and at one point they had to call the surgeon and ask him to “come to the cupboard on Piam Brown and assist with a central line removal” (the anaesthetic room is a bit like a cupboard although very well equipped), I’m sure the surgeon was a little bit shocked by the request and I think it was probably one of those panicy/funny moments.  It definitely made me laugh (I totally trust that Mia was safe and being well looked after, the team are truly fantastic).  So anyway the line is out, Mia was uncomfortable initially when she came round but nothing that a dose of codine couldn’t fix and she has been great this evening, enjoying a bit of trick or treating with Harvey. 

Her blood count is excellent…. having been to neutropenic last Friday to have her oral chemotherapy this week her bloods recovered dramatically which I hope will mean that for this week (without her central line) we will not have any febrile episodes which require IV antibiotics, we will definitely be keeping fingers crossed.  We are hoping to squeeze in a trip to the swimming pool in 4 or 5 days just before she gets her new line in next Thursday.  The new line will need 2 months to heal before we are allowed swimming which for Mia is like a lifetime she has swum at least once a week since she was 3 months old and is definitely missing it!

Thank you to everybody who is checking in regularly and for all the comments you’ve been leaving, Mia enjoys hearing what people have been writing and is even telling people that she has a website although at the moment she thinks it’s called .co.uk, I will work on the everybodylovesmia, I guess she thinks that bit goes without saying!!!!!

XXXXX

An up and down kind of day!

Wednesday, October 29th, 2008

Today has been hard work…it started well because Harvey got up fairly early (7.30) but managed to not disturb Mia who slept in till 8.15.  Harvey and Mia are sharing a room at the moment because Mia seems to need the company and after 6 weeks sleeping in lots of different beds I was craving the comfort of my cloud so Harvey has very kindly agreed to sleep in Mia’s room with her, this is the first time he has managed not to wake her!  The morning was good because we had all slept well and Mia was going to go to nursery for a couple of hours so she was quite excited.  At 11.00 after a quick trip to the park for a go on the swings Mia was delivered to nursery.  She went in really happily as if she had never been away, it was really great to see her settle in again so quickly.  I returned home and did chores (boring), then collected Mia at 12.30 (Scott and Harvey went to Jolly Rogers soft play madness).  Mia was so pleased to see me for about 10 minutes and then gave me hell!!!  She must have been tired from nursery but was just so awkward and screechy… I even abandoned my Tesco shopping in a desperate bid to get home and remain calm.  But Mia’s tantrum continued and she had to sit on the step and think about “why you are shouting at Mummy”, it is so hard to discipline her when she has dealt with so much over the last few weeks (so I hid in the kitchen feeling guilty!)

Tantrum over and we were all made up so we set about making Macaroni cheese for diner and it was fun!  Mia can be seen storing the cheese in her cheeks instead of adding it to the sauce…. “what me?” so cute.

Then Mia decided it was time to paint which started out fine but ended up with the kitchen counter being decorated in copious amounts of pink and red paint….which of course ended up all over both of us when I tried to clean up.  By now I’m struggling to be cool.

The final blow came when we got a call from Piam Brown Ward to say that baby snake will not be removed and replaced until next Thursday because there is no room for her on the theatre list until then.  Mia’s blood levels are not great at the moment and I now have to hope that she doesn’t get febrile (high temperature=infection=IV antibiotics=more stabs) or need a blood transfusion before next Thursday.  Lets hope we get a nice anaesthetist on Friday who will let her have gas to go to sleep for her intra-thecal chemo and they can take her blood levels while she is asleep.

Tomorrow is another day and I will stay calm :-)

Not so Central Line!

Monday, October 27th, 2008

Baby Snake (Mia’s central line) has relocated itself and is no longer in the vein leading to her right atrium!!!  At 2pm today I went to flush baby snake because it had blood in it again (it bleeds back into the line a lot.. no one can explain why!).  I could not draw out the blood so like any anxious mother I called Piam Brown ward for more support and the Sister Karen said that it would be OK to try flushing it through and that it would probably bleed back once flushed because the internal valves may have just collapsed together preventing me from drawing back.  So I hung up and tried again…. 1ml of saline no problem, 2ml’s of saline and Mia shouted “ow my stomach” and promptly pointed to her shoulder, on examination she had a swollen lump (of saline) under the skin exactly where the baby snake should be entering his vein.  PANIC… I hit redial and almost shouted down the phone that her line was leaking what should I do, and was calmly told (by Sister Karen again) not to carry on flushing it and to head to St Mary’s for an X-ray to check the position of the line.  3 hours later the X-ray clearly showed that Baby snake had wiggled his way all the way out of his vein!!!  Mia (is fine by the way she was undeterred by my drama) will be added to the surgical list at Southampton on Thursday or next Monday to have the line removed and a new one placed.  She is not going to be impressed when they want to site a cannula in a vein in her hand to put her to sleep…

Weekend of Rest and Relaxation

Monday, October 27th, 2008

Mia and I headed directly to Nana and Gary’s house after her chemo on Friday, Scott and Harvey battled through the Friday night traffic to join us for the weekend.  We were well fed and entertained, which included fireworks in the garden on Saturday evening, which followed a long awaited trip to IKEA (Scott would have happily waited longer!).  It was a lovely weekend and we even got to see Uncle Dan and Gemma for roast lamb lunch on Sunday.  Harvey discovered the magic of magnetics this weekend spending hours playing with his gift from our Southampton shopping expedition.

Thank you Nana and Gary you are fantastic hosts XX

CLIC Haven

Monday, October 27th, 2008

Our home from home…. CLIC Haven is funded completely by charitable donations made to the CLIC Sargent Charity.  It is a 6 bedroom house directly behind Southampton Hospital and is used by families who have children with cancer who are being treated at the hospital.  For Mia and I it means that we can leisurely make our way over to Southampton on a Thursday and stay the night so that we don’t have to leave home at 5am to be at the hospital in time for her chemo on a Friday morning. 

Auntie Gemma's CLIC Sargent awareness pose

It also means that we can spend extra time with family and friends near the hospital, this was incredibly useful during Mia’s induction treatment because Daddy, Harvey and Grandma stayed at CLIC Haven for 3 nights so they could visit us.  We also used the house during the day’s when Mia didn’t need to be on the ward, we would play in the garden, watch TV, use the playroom or even eat our diner there.

 

 

 

 

 

Shopping before Chemo…

Monday, October 27th, 2008

Mia is now in week 7 of her treatment, it’s called consolidation, the intensive first month is over and the interim maintenance is looming but for the 3 weeks in between these stages we have weekly visits to Southampton for intra-thecal (into spinal fluid) chemotherapy (methotrexate).  So each week she has blood taken from her central line (baby snake) on a Wednesday to check that her blood levels are OK for her chemo on the Friday.  I am now able to take the blood from baby snake so this does not require a visit to the hospital or a home visit from the community nurses.  Then on Thursday Mia and I are Southampton bound where we have an overnight stay before her chemo on Friday morning and then we head back to the Island on Friday afternoon.  This week we met the Aunties and cousins for a little retail therapy on Thursday, it was great to see Caleb and Jack as we haven’t seen them together since the summer…Caleb was on top form!

And Auntie Sam indulged in a little fancy dressing too.

 

After running riot, spending too much money and generally creating havoc in West Quay shopping centre for most of the day Sam took the boys home and Mia, Auntie Gemma and I headed of to Clic Haven for the evening.

MRD results are in…

Tuesday, October 21st, 2008

Minimal Residual Disease (MRD) samples were taken from Mia’s bone marrow aspirate on day 28 of treatment and sent away to Sheffield for analysis.  We were told that the microbiology results from the day 28 bone marrow confirm that Mia has less than 5% blast cells and is in remission, however treatment does not stop because historically when treatment was stopped at this point the Leukaemia always returned.  So the plan at that point was to continue on treatment regime A until we knew the result of the MRD.

At teatime yesterday the MRD result was in and Mia has High minimal residual disease…..Damn.. Not what we wanted to hear!  The clinical trial ALL2003 will now have to determine by random assignment whether Mia recieves more intensive chemotherapy treatment on regime C or she stays on regime A but with 2 intensification blocks of chemotherapy.  We then spent most of yesterday evening researching the MRD what it could mean for Mia who for the first time since treatment began had a high risk factor.  We decided that if she was randomised to regime C and recieved more chemo (which of course means higher toxicity and more suseptability to infections) then we would continue to take advise from Dr Jan who could remove her from the trial if at anytime she was not coping with the increased intensity.  If she stays on regime A at least we know that she is getting the current highest standard treatment and with the trial due to finish next year if increased chemotherapy is recommended than she may get it at a later date.

Dr Jan phoned the trials office at 09.00 and Mia was randomly selected to stay on regime A, she called us immediately with this result and as always reasured us that regieme A is the gold standard treatment that Mia would have got if she was not included in the trial.  We are quite happy with this news especially as Mia continues to remain well on this protocol (for now at least).  The road is never straight!!!!!!

Nana, Gary and Giles come to visit

Monday, October 20th, 2008

It’s so good to have visitors…..  We have been really lucky that Mia has remained well during these early weeks of treatment so visitors have not been restricted. 

Nana (my Mum) stayed with Mia and I in the hospital on days 1-5 and has not been able to visit since then so it was lovely to have her, Gary and Giles to visit us for the day on Sunday.  They bought a fantastic gift for Mia and for Harvey and they bought lunch for us all….. thanks folks XXXX 

Entertaining Mia.

Sunday, October 19th, 2008

Arts and Crafts.

By the end of September Mia could no longer walk or even weight-bear ( a side effect of the Chemotherapy drugs and steroids) so entertaining her on the sofa became my main mission (as well as feeding her and changing the TV channel frequently).

She loves Hama beads so it goes without saying that I purchased another 10000 beads to keep her going.  She also really enjoys painting which when she could sit up to the kitchen table was easy but it was much more difficult on the sofa….

Mia actually found the solution to this problem one day while we visited TOYS R US We were returning from her weekly visits to Southampton for Bone Marrow checks and intra-thecal chemo and she was allowed to choose a toy…. She chose paint your own Fifi and the Flower Tots plant pots,  fantastic!!  We have since bought ready to paint Disney Princesses and some more plant pots……. If any one wants to make some plaster figures for Mia to paint feel free XXX

 

Auntie Sam has also been providing Monday Crafts each week (which saves me from thinking for a day!). Our favourite so far has been pasta necklaces which Sam, Mia and I wore on our day out to the Brading Roman Villa.

Caleb and Harvey are too cool for pasta necklaces thay dressed as Romans instead.

Hanging out with Harvey

Sunday, October 19th, 2008

Sibling Rivalry fueled by Steroids.

Mia was often very spiteful to Harvey during these few weeks at home, it seemed as though each time he spoke she shouted ” stop it HARVEY”.  However Harv has lived through Mia’s terrible two’s so he just fell into line and got his own back whenever he could.  Scott and I tried very hard to remind Mia that it wasn’t nice to shout at Harvey but he was often winding her up making it very difficult for us to tell her off!  I think they’ll be firm friends again, it has definately improved since the steroids have stopped!

Mia was doing her scared face in this picture and she believed that Harvey was too!  Sorry Mia it’s not your best look but I had to show Harvey that Daddy gave him some rabbit ears too.

It’s fair to say that Harvey did have Mia in stiches with his antics at times and she loves it when he fool’s about (the rest of us don’t) :-)

Food Glorious Food.

Sunday, October 19th, 2008

It started with spicy sausage demands….

And it didn’t stop there!

The Devil (steroid) reared it’s hungry head on about the 7th day of treatment and the demand was from spicy sausage which was provided by Amy when she came to visit, it is very hard to source spicy sausage in a hospital that is a least a 30 minute walk away from any decent food shop!

The eating just continued to increase in frequency and the demand for new and sometimes very odd food was a daily occurance.  At it’s worst Mia would eat at least 5 times during the day and 3 times during the night.  Her cheeks got chubby and her tummy got big the huge!

We did consider buying shares in Marmite and Rollmops (pickled Herring) as these were definate favourites.

We also considered installing beds in the lounge!

Back Home.

Sunday, October 19th, 2008

Let us out…please

On Monday 22nd September 2008 Mia was discharged from Piam Brown Ward at Southampton Hospital and instantly became an in-patient at St Mary’s Childrens Ward on the Isle of Wight.  Luckily she was well overnight and they let us go home on the Tuesday.  Being back at home after more than 2 weeks away was fantastic………  Scotty and his Mum (Grandma) had hired a carpet cleaning machine and spent 5 days cleaning and tidying the house.  It was perfect!

Mia continued to take everything in her stride and over the first week at home she met all of the community nurses who come to the house to take her blood and deliver medicines and supplies. 

Hair cut.

On Friday 1st October Mia had her last hair cut for a while (I think….. I say that because as I’m writing this almost 3 weeks later she still has quite alot of hair).  The Doctors and Nurses had explained that she is very likely to lose all of her hair during the first few weeks of chemo so I thaught it would be a nice treat to go to the hairdressers and get a little princess pampering.  The result was a beautiful chic bob (which over recent weeks is often more fluffy and fuzzy than chic but never mind.)

Meeting Famous Folk.

Friday, October 17th, 2008

On 17th September we were reliably informed by Karon (play specialist) that we were to be visited by a famous Sailor… Not popeye!

So in true Mia form the nail polish came out..

Mia was in a fantastic mood and was really excited that Ben (not Benny from 2-3′s at nursery) was visiting HER!

He was a charming visitor who bought GOLD with him… What more can we say but thanks Ben Ainsley you really did brighten our day. 

Now I’m 3!

Friday, October 17th, 2008

One week into her treatment, on 16th September Mia turned three.  Auntie Sam had stayed the night with us so was there for the morning photo shoot, although only her hands featured in the pictures. 

 

 

 

 

 

 Later on that day Scott and Harvey came over to help the staff on the ward sing happy birthday and to help Mia and Mummy  eat the cake. (Thanks Sam Matthias for buying said pooh cake :-) )

 

All things considered Mia had a great 3rd birthday  and thank-you to everyone who sent cards and gifts XXXX

Just taking it all in My Stride.

Wednesday, October 15th, 2008

Over the next 3 or 4 days Mia enjoyed having visitors and generally getting used to being in the Hospital, there was a slight twist to the settling in period though and that was Dexamethasone (The Devil).

The Devil is a steroid given in large doses for 28 days to help attack the Leukaemia cells but it has side effects….   Tantrums (BIG ONES), mood swings, restlessness and increased appetite.

Scott and I had a favourite saying during these early days, “The highs are high and the lows are low”!

Harvey’s second visit to see Mia was pretty good she was happy to see him and even let him sit on her bed :-)

Dressing up and Making up became favourite past-times.

Visitors who got snapped during these few days include Grandad John (The Little Fat Guy…Mia’s words)

and Henry, Mia’s bestest boyfriend (Most of the time).  High praise has to go to Henry who did not snap back at Mia’s outbursts and he even wore make-up too!

Induction stay on Piam Brown Ward Southampton Hospital.

Wednesday, October 15th, 2008

DAY 2                        

11th September 2008

Today Mia went to theatre for the first time ever!  She was really brave and went to sleep without any distress which made it so much easier for me….

She had a central venous line (Mia calls it “Baby Snake”) inserted so that all of her chemotherapy drugs can be given directly into her vein without the need for repeated stabs (Mia’s word!). 

If all goes well and her line does not get damaged or badly infected then it will stay in for the whole 2 years of treatment.  It’s a good job Mia coped so well with it. 

We took this picture to show to Harvey so the line is cunningly presented by cuddly dog…..Not everybody gets the dog!

The first job for Mia’s new central line was to give her a blood transfusion as you can see by now she is very pale!

Mia had an anaesthetic again 2 days later for her first dose of intra-thecal chemotherapy and a bone marrow aspirate which confirmed her diagnosis as common Acute Lymphoblastic Leukaemia (cALL).  Her prognosis is good and for now at least she is commenced on the lowest risk treatment protocol known as Regimen A.

Feeling under the weather.

Sunday, October 12th, 2008

With hindsight I can see that towards the end of August Mia was starting to become poorly, She had 2 colds in a row and had started waking in the night and napping in the day.  

Because it was the summer holidays and we were having late nights and busy days I didn’t think that much of this.

On the 6th and 7th of September we went to the Bestival, despite the mud!  Mia had a bit of a cold so I carried her in a backpack so that she could enjoy the sights without her getting her purple croc wellies dirty! ( that was her main concern).  Scott and I both thought that Mia was looking a bit pale and that she was more grumpy than usual but because it was a busy weekend we didn’t really worry too much. 

On Monday 8th September I went to work and Mia was still tired and grumpy so she stayed at home with Scott and watched lots of telly.  At teatime I noticed some tiny red spots on her tummy (like a meningitis rash but she had no other symptoms), I was also worried that some old bruises on her knee’s had still not faded.  It did cross my mind that we should check it out with the GP but the surgery was already closed (like it always seems to be when my kids are poorly) and Mia was tired so I put me to bed as usual and was going to see how she was in the morning. 

At 9.30pm She woke up really cross and a bit confused, shouting at me and Scott and telling us to go away and that she wanted to go home.  She was very disorientated and very uncomfortable so I decided to give her a bath to calm her down.  While she was in the bath Mia became very calm but was hallucinating and giggling, not aware of my presence in the room.  I  noticed lots more of the little red spots, this time all over her body and she also looked incredibly pale.  I decided that I couldn’t wait till the morning and decided to take Mia to A&E. 

She was (of course) instantly “normal” again as soon as I got her in the car and headed off on the 20 minute drive to the hospital and there were a couple of times when the thought crossed my mind that I was over reacting but I carried on and by 11.30 she was checked in and was being seen by the Doctor. I gave the account of the episode that evening and told the doctor about the bruises and tiny red spots so they took some blood and admitted us to the Children’s Ward for the night.

On the morning of 9th September on the Children’s Ward the paediatrician started saying that her platlets and haemoglobin were low and then when examining her he said her liver and spleen were palpable, panic was begining to take hold but I couldn’t workout what all this meant (despite being a paediatric nurse).  At about 11am Scott and I were called into see the Paediatrician who explained that he believed the blood tests showed that Mia had Leukaemia and that we needed to go to Southampton hospital where more blood tests could be carried out to confirm this.

By 5pm the same day Mia and I arrived at Southampton Hospital where Dr Jan confirmed the diagnosis and Mia’s treatment began……..