Interim Maintenance No 2

Thursday, February 26th, 2009

Mia is now on her second interim maintenance block of treatment.  Her medications for the next 8 weeks are: Vincristine (chemotherapy) IV into ”baby snake” once every 4 weeks, Dexmethasone (steroid) twice daily for 5 days then twice daily for 5 days again in 4 weeks time, Mercaptopurine (oral chemotherapy) once a day at bedtime, Methotrexate (oral chemotherapy) once a week at bedtime, Septrin (oral antibiotic) twice a day on Saturday and Sundays to prevent pneumonia infection.

All of these medicines are given at home except the Vincristine which can be given at St Marys on the Isle of Wight so we don’t have to make any trips to Southampton for a couple of months which is great.  After this block of treatment she will have her second delayed intensification, she needs 2 intensification’s because her MRD (minimal residual disease) test on day 28 was high. 

The steroids only started 2 days ago and she is already very tearful and sad, or grumpy and stroppy!  It’s really shocking how quickly she can change from the out going and chatty little girl that she is into a very tense and changeable one.  I try very hard during this time to focus on how good the steroid is at fighting the Leukaemia cells instead of focusing on how difficult Mia becomes, after all it is not her fault!  However I will be very happy when day 5 is over and we will see her settling back into herself again.  In the meantime I need to help her keep those Teddies in order at  bedtime (it’s like an obsession!) if they don’t line up correctly she gets very distressed and cannot settle to sleep.  Most of all I need to keep my cool it’s not going to help Mia if I have a tantrum too! 

On a really positive note Mia’s blood levels have improved dramatically, she is recovering from the intensive chemotherapy of the last 7 weeks, her neutrophils are on the up and she can stop her IV antibiotics.  Mia’s blood results from yesterday with normal counts in brackets are: Hb 100 (120-140), WBC 1.2 (4-10), N 0.6 (2-6 neutropenic if below 0.75), Platelets 427 (150-400). 

XXXXXX

Birthday weekend…

Monday, February 23rd, 2009

It was my birthday this weekend and thankfully Mia was on fantastic form.  The day started with me having a lie in !  Followed by breakfast in bed, presents and a leisurely shower. 

Mia and Harvey enjoyed sometime in the garden whilst the sun was shinning then Nana and Gary came for a visit and treated us all to lunch on the seafront followed by a walk on the beach where we searched the rock pools of “Harvey’s reef” (named by Scotty last summer because Harvey spent so much time there!) finding crabs, tiny fish, winkles etc.

 When we returned home Harvey and Mia decorated the 32 mini cupcakes that I had made for my birthday cake this year… I have nearly eaten them all!

 

 

Mia’s blood counts are slowly rising although she is still profoundly neutropenic at 0.1 and therefore continues on her once daily IV antibiotic.  She will begin her interim maintanence again tomorrow with IV Vincristine, Dexamethaone (steroid argh) for 5 days and mercaptopurine and oral methotrexate should be commencing again but will be held off until her neutrophils have recovered to at least 0.5. 

Hospital admission run-down

Friday, February 20th, 2009

After writing the last update on Saturday evening Mia became much more poorly.  Sunday morning was OK with a visit from Scott and Harvey to keep us busy but Mia continued to have high temperatures and her blood results showed that the chemotherapy was still active in her body, dropping her Hb to 64 again and her neutrophils were back down to zero.  She developed a chesty cough and became very lethargic and irritable within about an hour.  She really worried both the nurse looking after her and me… her temperature hit 39.4 and the oxygen levels in her blood had dropped to 88% (they should be 98-100%).  She was given oxygen and nebulisers to try to clear her chest, a chest X Ray was taken and she was started on a third antibiotic.   Paracetamol eventually brought her temperature back down and with oxygen on over night by Monday morning she was a little better.  Mia had her second blood transfusion on Monday with piriton and paracetamol as a precaution in case she reacted again, but thankfully she tolerated it well and it went some way to perking her up but she was clearly still feeling poorly because she did not want to do much!  A fourth antibiotic had been added to her treatment by now and this one was oral and tasted really foul… Mia was not impressed and almost leapt with glee on Wednesday when it was stopped!   Mia’s blood results on Tuesday were better because the Hb was up to 92 after her transfusion but her platelets had dropped dramatically to 33, they don’t transfuse platelets until they are down to 10, and luckily Mia has started producing her platelets again quickly and they are back up to 81 today (Friday) which is really reassuring it means that her bone marrow is working hard and hopefully her other counts will improve over the coming days.  Meanwhile back to Monday, Harvey had been whisked away to have a couple of fun filled half term days with cousins Caleb and Jack which was fantastic thank you Sam XXX

By Wednesday Mia was sooo much better the antibiotics had worked their magic, her temperature had settled and she was starting to feel more like herself, we managed to escape home for the afternoon where we made Jam Tarts and  big mess!!!! 

 

 

 

 

 

 

 

Back at the hospital Mia didn’t require any oxygen on Wednesday night and had started to cough really well so her chest had cleared and on Thursday morning after our longest and scariest admission yet she was given the OK to come home.  She will continue on one antibiotic once a day until her neutropils recover they are still only 0.1 today.

The road is never smooth…

Saturday, February 14th, 2009

So Friday morning, Mia went into nursery for a few hours, she had been a little unsettled with her cold and had woken early but was otherwise well and her temperature was normal.  I collected her slightly early because she didn’t want her lunch and her teachers felt that she had had enough and was tired.  We went home and I gave her her last dose of Cytarabin before heading of to St Marys to get her blood transfusion. 

This is where it started to go less smoothly…. within 15 mins of the blood transfusion starting Mia had become very quiet and grumpy and her temperature was very slightly increased, by 30 mins in her temp was up by half a degree and she was more irritable.  1 hour in and her temperature was a whole degree higher and she was crying complaining of neck pain, so the transfusion was put on hold and she was given paracetamol and piriton to settle any allergic reaction.  The transfusion was recommenced at a slower rate but Mia’s temperature continued to be elevated and she vomited!!!  So it was abandoned with the plan for us to return in the morning and recheck her Haemoglobin levels.

Unfortunately we didn’t make it through the night at home… Mia developed very painful earache and a temperature of 38.4c so we made the midnight dash to St Marys to get IV antibiotics started.  That was last night and today Mia has been up and down both in terms of her temperature and her mood with the two being closely related!  Her blood results today indicate that she has not started to recover from the chemotherapy over the last 2 weeks all her counts were lower except the Hb which has improved slightly to 77 even though she only managed an hour of the transfusion (must have been a good donor).  She will continue on her Gentamicyn and Tazocin antibiotics until Monday morning and if her temperatures have not settled more antibiotics will be added in to the treatment.  I have managed to snap a few pictures during this admission and will add them as soon as we get home, please be reassured that Mia is still smiley, cheeky and willful!  XXXXX

Haemoglobin now 60…

Thursday, February 12th, 2009

Mia went to nursery this morning and was absolutely fine so when I took her blood samples to the hospital this afternoon I expected to find that her Haemoglobin had begun to rise again.  However it has dropped quite dramatically to 60, she has been cross matched and will receive her blood transfusion tomorrow afternoon.  It could not be done today because the blood has to be ordered from Southampton which takes a bit of time.  She remains well despite her blood counts although she seems to be developing a cold, I will keep a close eye on her tonight and will be making the midnight dash (again) if she becomes unwell.  If not we will go to St Mary’s tomorrow afternoon for about 4 hours to have the transfusion.  It is the last day of her Cytarabin tomorrow so her blood counts should start to recover, her neutrophils already look like they are on the way back up (0.5 today compared to 0.4 2days ago) so that’s a good sign.  XX 

Haemoglobin down to 79 time for Trampolining!!!

Thursday, February 12th, 2009

Mia is now in week 23 of treatment and the final week of this first intensification.  She had her Lumbar Puncture with intra-thecal chemotherapy yesterday and commenced on another 4 days of IV cytarabin.  It was a very long day that started with our 6.30am ferry being cancelled (bad weather), we endured a 3 hour wait for pharmacy to dispense Mia’s chemotherapy medicines to the ward and we didn’t get home until after 6pm!  I was exhausted but Mia was still ready to put up a small fight at bedtime!  It was only small though because she had been good the night before and earned the reward of bedtime stories again (they had been banned for the previous 2 nights for not settling without tantrums… That makes me sound cruel!  I do give her fair warnings I promise).  So by 8pm Mia was settled and she slept till 8am so she clearly needed a good sleep and her energy levels today have been great despite a low haemoglobin of 79.  She will need a blood transfusion if they drop by much more but it is also dependant on how she is coping with it.  The haemogobin carries oxygen in the blood so signs of fatigue, low energy, increased respirations, and tiredness would indicate that she is not coping….None of these so far, in fact quite the oposite Mia has been on the trampoline today for the first time since about November.  When she did last have a go she managed only a few jumps, today she bonced for a good 5 minutes and even attempted a seat drop!  I have tried to upload the mini movie but have failed.. if I manage to get it on youtube I will post the link.  As a  result of the anaemia (low Haemoglobin) She does look very pale, “Princess Casper” (friendly ghost) was the nickname of the day, to which Mia replied “Is Casper a boy?” with raised eyebrows as if to say “I don’t think you can call ME that”.  It seems strange that Mia is so obviously anaemic at the moment and yet when she was diagnosed with Leukaemia her Haemoglobin was much the same as it is now and we hadn’t been that aware of how pale she was.  It is possible that it was so gradual and that because there were no other obvious signs that pointed to her being very unwell we did not notice it.  I still often think back and wonder how long before her diagnosis the Leukaemia was taking over her little body,  I am not angry that we didn’t know sooner and I don’t feel responsible for not spotting any earlier signs if they were there, we did spot the signs (not that we knew what they meant at the time) and Mia was diagnosed promptly, I’m just sad that it happened at all!   I do not dwell on this for long though because meanwhile although her life has changed dramatically Mia embraces everything that she does with the exception of bedtime (lol), like trampolining on a freezing cold February day with a ballerina dress on.  Mia also accepts the need for every hospital visit and every treatment including almost daily medicines (some of which taste horrid), she understands that it is necessary to fight the Leukaemia and make the baddies in her blood stay away… So that’s that! ;-)   We take our lead from our beautiful 3 year old who takes it in her stride. 

I have tried and failed to add the movie of Mia on the trampoline so you can have a picture of her watching said movie on the laptop instead!

Plan for the week ahead… Hopefully Mia will be well enough for nursery in the morning then I will take her bloods and we will take them up to St Mary’s at lunchtime where we may have to stay for the afternoon if she needs a transfusion.  Mia is also neutropenic again this week so there is a risk of opportunist infections… I will keep you all updated, Thanks for visiting XXXXXX

PS. Mia has been watching a Peppa Pig episode which featured a rather large spider which has resulted in a bit of arachnophobia today… hopefully this will be short lived XX

This weeks update…

Sunday, February 8th, 2009

Nana and Gary like many others have been enjoying much more snow than us and Uncle Dan has built the most fantastic Polar Bear sculpture in their garden which I just had to share because Mia, Harvey, Scott and I were so impressed with it.

 

 

Auntie Gemma has been with us this week so on Wednesday we were the Laddies that Lunch, we went to Marks and Spencers!  Mia has had her Cytarabin chemo everyday at home which I have done with the community nurses visiting for support.  She went to nursery on Thursday and Friday and that’s about it really, quiet mainly because it is so cold out so we have just stayed in for most of the week.  Mia has been a bit of a pickle at bedtimes and waking at least once most nights, I thought we had this cracked because she has had a star chart for the last month which helped her to get back into a really good routine.  But no sooner than she had got her reward ( a play hairdryer set !  ) she started fussing again!  It is exhausting and is the one time of the day that I find myself getting really wound up, because I am also tired.  She is a very clever little girl and has a fantastic repertoire of delaying techniques eg.  “we forgot to take my temperature”, “I didn’t have a drink”, “Teddies aren’t lined up straight”, “We didn’t read ….”, “I haven’t kissed Daddy/Harvey”,  “I need a wee” and the list goes on and on and on until I finally say that’s enough which results in lots of tears and not the calm bedtime that we all need!  I think we need another star chart!  I wonder what treat she will choose this time, hair bands and clips maybe (he he he).

We have had a good weekend though and today we went to Amy and Matt’s for the afternoon and had roast beef dinner… it was fantastic.  Harvey and Mia both loved seeing Maisie and Evie and all the children played together brilliantly.

 

 

 

 

 

 

Mia has another Lumbar Puncture on Tuesday and there are still no rooms at CLIC Haven so I think we are going to do the early morning trip on the ferry instead… wish us luck.  She will also have another week of daily Cytarabin chemotherapy given once daily via baby snake at home, then we have to hope that as her neutrophils plummet she doesn’t catch another infection.  Her Heamoglobin is 85 at the moment but has been steadily going down during this intensive treatment if it gets down to 70 she will need a blood transfusion so we will be keeping a close eye on this.

Treatment Day brings more snow…

Sunday, February 8th, 2009

When Mia and I awoke in our hotel room (not so posh!) on Tuesday morning we looked out the window and discovered about 2 inches of snow… Very exciting, but it was still snowing and we had to drive about 10 miles to the hospital!!!  We took our time and arrived safely, it was beautiful and white everywhere so Mia had a quick play before going in to get her treatment.

 

Outdoor playtime over, we arrived on the ward and Mia was seen by the doctor then we had a 2 hour wait till it was her turn to go into the anaesthetic room for her Lumbar Puncture so we got busy with Karon the play specialist and made a fantastic handbag!  It took all day for the glue to dry because Mia used so much.

 

After her Lumbar puncture Mia had her Cytarabin into her baby snake (central line) and then had to be plugged into Robbie Robot for her IV fluids which need to be given before and after her other chemotherapy drug Cyclophosphomide, we ate some lunch and awaited the arrival of Auntie Gemma who was going to come and meet us at the hospital and then come home with us for a few days.  It was an easy wait because there were other patients that we knew on dayward so I did lots of gossiping and Mia chatted and played (really happily… this was definately the best long hospital day yet she was so chilled all day…Love her).

Auntie Gemma arrived and Mia got creative with her making masks this time!

 

 

We were finally finished and free to go at teatime so after a quick pitstop at the golden arches (Mcdonalds) we were on the ferry homeward bound.  Mia was fab today XXXXX 

Snow…

Monday, February 2nd, 2009

Couldn’t resist another quick update to share pictures of Mia in the snow this morning.  We only got about an inch of snow but as soon as Harvey was dressed for school, and Mia was dressed in her ballerina dress and dressing gown!  The kids hit the street for a little bit of fun in the snow.  

 

 

 

 

Have just got a call from Piam Brown to say there’s no room at CLIC Haven for Mia and I tonight so we have booked a hotel (Girls on tour style)… We will be heading of at 3pm.

A Great Weekend

Monday, February 2nd, 2009

We have had a fantastic week, topped of with a really calm family weekend.  Mia continues to sleep well and has been in a great mood pretty much as soon as she’s awake and for the whole of each day…this of course means the rest of us are too.  On Friday before she went to nursery for the afternoon Mia drew a picture of me which I had to share because it is so damn good (despite the fact that my arms are connected to my head!).  After nursery Mia and Harvey had a great time making faces, it is their most favourite past time and Harvey is particularly good at it he never fails to make Mia laugh (or look exasperated!).

 

 

 

 

On Saturday we had quite an early start thanks to Mia.  Harvey had a “gifted and talented” workshop so was at school for the morning and Mia and I played in her room (I love Mia’s bedroom), we played puzzles and shops.  After collecting Harvey we went to Pizza Express for lunch, we hadn’t been yet in January so it was a real treat.

Today we have had friends over for lunch and had a really good time just hanging out at home, Mia finished the day with an impromptu ABBA dance session which was entertaining and had us all singing and swinging along.

Mia and I are off to Southampton tomorrow, we will stay at CLIC Haven for the night.  On Tuesday Mia will have a lumbar puncture with intra-thecal chemotherapy followed by IV Cyclophosphomide and Cytarabine (both chemotherapy meds) then home in the evening, hopefully with Aunty Gemma who is coming to stay for a few days.  I hope the next 2 weeks go smoothly, I’ll keep you informed XXX