Intensive Chemotherapy is complete…. Whoop Whoop

Friday, June 26th, 2009

Mia has officially finished her intensive chemotherapy as of today, it is  really great milestone to reach.  Her blood count however is still suffering from the effects of all the chemotherapy over the last couple of weeks so the opportunity for infections remains high.  Her bloods today were as poor as ever her HB ( the oxygen carrying cells) is only 66 (should be 120) she may need a transfusion if this gets any lower or she becomes symptomatic IE. breathless, restless, drowsy and listless.  Her white blood cells are very low at 0.6 (should be 4), her neutrophils are 0.2 (should be 2) and her platelets are only 72 (should be 150).  It will take at least another week for all of these results to show an improvement so we are once again hoping that Mia doesn’t catch an infection in the meantime. 

Despite her depleting blood count Mia has, as always, had a busy couple of weeks of activity.  She continues to enjoy nursery 3 days a week and we have also fitted in lots of Bike riding, trampolining, scooting and visits to the beach and play parks. 

Last Thursday Jack (cousin) and Auntie Sam visited for the day to make up for us missing Jacks birthday party at the weekend.  They arrived from Hove before Harvey had even left for school which was really exciting.  Mia and Jack really enjoyed spending the day together, it was a beautiful day and Sam and I took them for a long scooter ride down to the beach where we enjoyed lunch before Jack ran ‘Baywatch’ syle into the sea.  Mia stayed on the shore and played on her scooter (and ate extra lunch)! 

 

 

 

 

 

It was sad to see them head off for home and Mia was a little teary eyed as she watched them board the Hovercraft, she turned to me and said that “me and Jack were having a really nice time together, I don’t want him to go” sniff sniff… Love you Sammy, Jack and Caleb and Dan (currently enjoying Sardinia then Italy).

Nana and Gary are visiting tomorrow, very excited.  Oh and Mia has a new challenge, if she can go to bed without the oscar winning delay performances every night until Harvey breaks up from school we will buy a swing set including swinging seesaw thing for the garden… watch this space.  XXXX

Daddy’s Birthday and the Bike…

Friday, June 26th, 2009

Scott (Daddy) had his birthday on 7th June and because Mia was still in hospital at the time I completely forgot to write it in her diary… It was an important birthday for Mia (not Scott :-) ) because she had completed her challenge of doing all her Poo’s on the toilet or potty and that of course meant that she would get her pink bike! 

During our day release from St Mary’s the day before Scott’s Birthday Harvey, Mia and I baked a chocolate cake, we had to leave Harvey in charge of decorating because we didn’t have enough time before going back to the Hospital, he did a very good job.  

On Scott’s birthday, Mia and I were allowed out by 11am, we arrived home to find that Harvey had made a banner and Scott had only just got up  (An excellent birthday present)! 

Our friends Amy and Matt, Maisie and Evie visited and bought all of the supplies for homemade burgers which we cooked on the BBQ.  Mia was still having temperatures and was on antibiotics 4 times a day so after a quick birthday tea we had to head back to the hospital for the night.

Mia was discharged on the Tuesday of that week but there was still no opportunity to go and buy her bike because she restarted her chemotherapy on Friday and it was just a very busy time but the following Tuesday we went and we bought !!!!  It is pink, has tassels and has a baby seat that fits on the back… Mia loves it!!!!

No more delays..

Sunday, June 14th, 2009

Another delayed update…sorry!  But no further delay on treatment!  Mia continued on her antibiotics in Hospital until Tuesday moring when we were discharged with antibiotics to continue at home for  further 3 or 4 days depending on her neutrophil count.  So back at home we got back into routine thinking tht her count would not be good enough till next week to restart her chemo, however neutrophils on Thursday were 6 and the doctors over on Piam Brown felt that bcause they were rising it was fair to assume that by Friday they would be up to 7 which would mean she could have her Cyclophosphomide and Cytarabin.  So at 6pm on Thursday I hastily got on the phone to book a ferry on what would be one of the busiest days of the year due to the Isle of Wight Festival, we were very lucky and managed to secure our return journey for Friday.  We were on the ferry by 7.30 and after a long day on Piam Brown getting 3 different chemotherapy drugs we were back on the ferry by 6pm with lots of Festival goers. Mia was a superstar all day, I was so pleased thatwe got through such a long day without any tears or tantrums, she really does “pull it out of the bag” when needed… love her. 

We were due to go and see Auntie Sam, Dan, Caleb and Jack this weekend for Jacks birthday party but Mia is having chemotherapy (Cytarabine) daily and is still neutropenic so travelling was not a good idea.  However, the weekend is a beautiful one and we are enjoying the sunny days.

 XXXXXX  HAPPY BIRTHDAY JACK XXXXXX

Only 4 days back at home and now another infection

Friday, June 5th, 2009

On Monday we were discharged home with IV antibiotics to continue once daily until Mia’s neutrophils had recovered to 0.5, this meant that her treatment was delayed for the week because she was not well enough to start the next cycle of chemotherapy.  She was happy to be back home and thoroughly enjoyed our first proper swimsuits on the beach day this year on Tuesday. 

 We collected Harvey from school and headed straight for a very quiet beach at Springvale where the two of them had a great time running and splashing in the warm shallow water.

We also had our first BBQ of the year in the evening, it was a really good day.

 

On Wednesday Mia and I enjoyed another afternoon on the beach this time with Sam, Henry and Bella because Harvey had to go to swimming lessons.  It was great for Mia to catch up with Henry and Bella because she hasn’t seen them for a few weeks and she was full of beans running around on the sand and making sand ice creams with Henry.  We headed of to Puckpool for a real ice cream and a quick play at the park before tea aswell, another great day.

Thursday and it was back to nursery for Mia, she was raring to go and had a great morning.  On returning from nursery I took her daily blood sample and administered her IV antibiotics and we were just getting ready for another trip to the beach when Mia sundenly became very grumpy and poorly looking.  A quick temperature check confirmed that she was not well her temp was 38.2 and she was shivering and irritable, so it was straight back to St Marys for us!  It was a particularly woprrying journey because I knew it must be some sort of infection from her central line because she had been fine until I used it and I could sense from the way she was that Mia was becoming very poorly and quickly!  In fact by the time we got to the hospital her temp was 39.5!  So here we are again having IV antibiotics in St Marys and probably looking at another weeks delay on her chemotherapy.  It is Scotts birthday on Sunday so I have everything crossed that the antibiotics work their magic quickly and we are home with him and Harvey soon.  XXXXX

You will have noticed from the pictures that Mia’s beautiful new hair is all gone again, we did expect this and as ever Mia is totally cool about it and she knows that when it comes back this time she shouldn’t lose it again.