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

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

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…

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

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.

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.

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!!!!!!

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 

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.

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)