31 October 2011

Happy Halloween

Paige started her week off really well, we visited her buddy Joseph to wish him a happy birthday, he turned 1 last Thursday. Even though she fell asleep in the car on the way there, as soon as we got there she was happy and charging around the house, smiling all the time with Joseph, he too seemed pleased that we were there.

This week Paige continues with her delayed intensification and has a lumbar puncture in the morning followed by Cytarabine in the afternoon. Her Cytarabine will continue for the rest of the week. Luckily this chemotherapy is a a short injection into her line, but she'll probably feel pretty crummy by Friday afternoon.

I must admit I am really looking forward to her maintenance, and she probably is too. She continues to be her precious self, ordering all of us around including me at night on the bed to move so she could have my space!

Sam dressed up as a pirate today for school and went trick o treating for the first time tonight with our good friends Elfrieda and Susie, unfortunately I haven't heard all about it yet cause he fell asleep on the way home, so stay tuned.

29 October 2011

See you next year mama :-(

Paige though a bit sickie fared quite well with her Chemo this week. She even ate her dinner two nights in a row! She's also a bit steadier on her feet now, she was a bit wobbly after the Tuesday marathon. Her blood results done yesterday showed that her neutrophils have finally moved up to 0.3, which makes very little sense to me given her week of Chemo go figure! I guess now that her viral illness is gone they have recovered somewhat
Last night for the first time when Paige woke up in the middle of the night she got her taggy and walked over to our bed with a huge smile of her face.
Sadly after 6 months, mummy has to return home to take care of her baby and my best friend, Kevin who will undergo major surgery on Wednesday next week. It is always so traumatic when close family are ill and you can't be with them.
Anyway a huge thank you to my mummy for her unconditional love and support for the last six months, she will be missed by all of us. Including all the folks that had the pleasure of her curry and roti :-(

26 October 2011

Happy Divali and the Chemo continues

Paige wasn't a particularly happy bunny today, she had quite a restless night and eventually woke up at 4.00am and was sick. She eventually fell asleep after 5.30am and some anti-sickness medicine. When she woke up she was not particularly interested in any milk. She's really clever though, if her tummy is ill she won't have any food. She also seemed quite unsteady today and fell over quite a few times. Her cytarabine continued today, with more doses tomorrow and Friday.
We celebrated Divali today for the first time in England, mummy cooked all the yummy food and I even helped with the sweets! Eveyone that came over really enjoyed the food and both Sam and Paige were wonderful hosts. By 8.00pm though Paige was completely shattered and needed her bed. The kids also loved the deeyas and they both looked so gorgeous in their traditional outfits.
Dr Mary Morgan called this afternoon with excellent news, Paige's flow cytometry results were in and it was all clear, so her leukemia is not back, thank god, her bone marrow is just recovering slowly. So our minds are at peace again and we can have some much needed sleep.
Good night all and may mother Lakshmi's blessings reach us all by the end of the day.

25 October 2011

Longest Day Ever - Chemo starts

Today had been one of our longest days ever, we left home at 7.40am and returned at 8.15pm. Paige was scheduled for a lumbar puncture (LP) and at our review with Dr Morgan, it was decided that a bone marrow biopsy (BM) would definitely be done so that a decision could be taken by midday on whether her chemo could be resumed. By midday Mary had reviewed the results and was satisfied that Paige's bone marrow was clear and regenerating. Mary wanted to press on as much as I did.
Having only made the decision to go ahead just after midday, I was not sure what time the chemo would arrive on the ward. Today's chemotherapy consisted of Cytarabine and Cyclophosphamide. Cyclo requires hydration for 1/2 hour prior to the infusion, which takes another 1/2 hr, then more hydration for 3 1/2 hrs. So in total 4 1/2 hours!

I still continue to be absolutely in awe of our daughter, after having a LP and BM she was awake, smiling and so happy to walk around; normally she would cry for at least 1/2 hr after she woke up. 4 1/2 hours is a really long time for her to be hooked up to a drip on a trolley with the shortest line ever! But she played with her stickers and read books for 2 hours, of course by then she was bored. Lo and behold I set her on the ground and she started walking about and pushing her trolley all by herself! We were all dumfounded watching her walking around, I so wished that I had a video!! Her chemo will continue at home for the next three days.

There's always the risk of receiving sad news when on the ward for such a long time and today was particularly bad. One of the little boys that we met this year with a very rare type of tumor has now had two rounds of chemo with no success and is on his third round, if this doesn't work his parents will have to prepare for the worst. He turned 1 earlier this month, so tonight please offer up a special prayer for him, his name is Orlando, and also pray for strength for his parents so that they can cope with whatever comes their way....

24 October 2011

Lumbar Puncture

Paige's had her first full blown tantrum today that lasted 15 minutes, she absolutely refused to wear any clothes and took off everything that I put on for her. She was then as quiet as an angel and no one at the hospital believed me! Her neutrophils have increased to 0.1 up from naught finally so her lumbar puncture is a go for tomorrow as well as another bone marrow to determine why she is recovering so slowly. As soon as she gets to a minimum of 0.4 she can complete her chemotherapy for the block.

23 October 2011

Discharged but still no neutrophils :-(

Paige was discharged on Saturday afternoon after she was switched to another anti biotic that is required once daily. We promised to return for a review, bloods and more anti biotics on Sunday, as well as clinic on Monday. She hasn't had a temperature since Friday but her runny tummy continues. Despite it all she continues in her good spirits boldlg taking things away from Sam and bolting off with it. She even orders me around with "Move" or "back" if I taken away something that she shouldn't have.
So we will be back at QA tomorrow at 1.00pm for another review, more bloods and another dose of anti biotics. Poor child she just never gets a break from meds :-(

22 October 2011

Past Couple of Days


Paige was carded to experience her first Jiggy Wrigglers session at 11.00am at home today, but Sally kindly agreed that she would gladly come to the hospital at very short notice, I spoke to her at 10.30am and she was at QA with her bags of tricks and boom suitcase by 11.30am. Our session was worth it's weight in gold! Paige unfortunately had fallen asleep and I had to wake her but she absolutely enjoyed it. Joseph was also in the hospital that day and he was able to join us (hence the photo). I wasn't sure what to expect but what we got was beyond our expectations, there was lots of singing, dancing bobbing around and lots of musical toys, colorful fabric, puppets and even bubbles! Sam was jigging in about and boy does Sally have energy. We'll certainly be asking her to come and see us again. Thank you Sally!
Afterwards Paige ate her dinner and we spent the afternoon with Joseph as he received his blood. It's still pretty amazing to watch how Joseph and Paige respond to each other with the most beautiful smiles and hand holding. They are both absolutely amazing, brave and determined souls :-)


I was most disappointed that even though Paige's blood culture, line swab and stool sample came back negative that we could not be discharged. Reason being that her neutrophils are still naught and she still has diarrhea. Dr Walker explained that even though she is clinically well, it is simply not worth the risk to take her home when she has zero neutrophils and has been experiencing bouts of fever and diarrhea. We were however allowed to come home between antibiotic doses this afternoon at noon with a promise to return by 7.00pm.
Paige's face lit up when we arrived home she kept walking around and smiling. She even ate a decent lunch for the first time this week. Sam was also quite pleased to see us and greeted Paige with "I really missed you Paigey" he even volunteered to go up and accompany her when she woke up in the event that she was 'afraid'.
So we packed our bags and Russell and Paige headed off for the QA again last night. Closely followed by Sam and I because we forgot to pack her 'Taggy', her one comfort and I couldn't let her go without it. Being there did give us four a chance to spend to quiet, quality time together.
Dr Walker assured me that she was on call this weekend and if Paige has not had a temperature or diarrhea and there is any evidence that her neutrophils are recovering she may be discharged on Saturday. It's quite frustrating when Paige looks so well that she is stuck in the hospital but if it's one thing that we've learned with this whole experience is how deceivingly good Paige always looks despite her illness. So as good carers we will all err on the side of caution, simply because it is not worth the risk and follow the consultants advice explicitly. Dr Walker is an excellent consultant and I have learned so much from her in the past six months, she was the first consultant that we met when Paige was diagnosed on that faithful day, six months ago....and we have come to value and trust her knowledge and guidance.

19 October 2011

Hotel QA - here we are again

Paige seems to have a definite preference for going to the hospital in the wee hours of the morning. She had a great day biting into everything she could get her hands on, including but not limited to peeling Samuel's stickers off his T shirt. Anyway at 7.00pm she spiked a temperature of 37.8C, and of course I called the hospital. she then cooled down by 8.00pm and out of an abundance of caution I checked again at 9.00pm and 10.00pm, while also packing our bags. She had settled down at 37ish. I also kept her in our bed so that she could be monitored. At 1.30am i woke up to some really loud sounds coming from her nappy with a particularly unpleasant odor. She also had a temp of 38.5/6 so I called the hospital and we were on our way.

With neutrophils of zero, diarrhea and a temperature of 38C there were no delays, plus the CAU were having a really slow night, so everything was ready for us when we arrived at 2.30am. Two doses of anti-biotics, (including a 1/2 hour infusion) a blood culture, line swab, change of dressing and a review from the Registrar on duty (who I might add was particularly easy on the eye at 3.00am) was done in record time and we were settled and in bed by 4.00am in the Starfish ward. As per protocol we will be there for a minimum 48 hours until the results of the line swab is back.
In the meanwhile Paige is enjoying all the attention while increasing her medical capabilities, she now trys to take her own temperature and today she took the discarded wipe and tried to clean her bung! she obviously pays attention to everything that is being done to her. My very clever daughter :-)

Chemotherapy still delayed

After doing bloods bright and early on Monday morning, so that a plan could be made for the rest of the week, the results were very disappointing. Paige's neutrophils are NAUGHT, yup that means that she cannot have any treatments this week and she will be delayed for yet another week. Of course this is not a new scenario for us but it does drag up the old concerns and worries. Paige experienced a similar delayed after induction was completed and before consolidation began. So the new plan is that blood will be done again on Monday and her Lumbar Puncture will be done on Tuesday pf next week and the blood results will determine whether another bone marrow is required. The reasons for her neutrophils recovering so slowly could be
1) she hasn't recovered from the last set of chemo that was given
2) she could have another infection. She's just had two already and the bugs keep crawling in since Sam started preschool
3) she has had a relapse - god forbid
Of course by Tuesday morning our wonderful POONS (Pediatric Oncology Outreach Nurse Specialist) Naomi called to reassure me that I shouldn't worry about the delay, because it happens all the time with kids on this protocol.
So forward we march, despite Paige having literally no neutrophils she is still happy and carrying on with her life completely unperturbed, her greatest worry being "what should I put in my mouth next?"

15 October 2011

More quiet time

This week has been particularly uneventful. Bloods on Monday confirmed as suspected that neutrophils were too low at 0.3 to begin chemo on Tuesday. Her next bit of chemo in this block will start with a lumbar puncture in the AM followed by Cyclophosphamide and Cytarabine in the PM. Cytarabine will continue for the next three days at home.
She's been well this week, and been getting into alot of trouble! She loves watching nursery rhymes on the computer and bangs on the keyboard if I select one that she either doesn't like or doesn't recognize. Stupidly today it took me about 5 mins and a near restart to work out that the internet didn't work because she had switched off the wireless button! She's also taken to dancing whenever there is music on and she's got quite alot of rhythm too :-)
She's looking really well though, despite her hair loss.....

The plan for next week is that bloods are taken at home bright and early at 8.00am, so that a plan for the week can be generated. Really hoping that she can start this week, she's now been delayed two weeks already.

9 October 2011

Quiet Weekend

Quiet weekend granted! It was pretty quiet, the highlights being Paige's line site lump almost gone, the last dose of IV anti-biotics given on Saturday and the receipt of her portraits. The portraits were done on September 17th, our photographer Karen is fabulous, dunno how she manages such great shots with Paige on the move!
Our little miss has now learn't how to steups (a Caribbean sound made by sucking your lips as a sign of disgust) but she does it really sweetly! She also had some lamb today which she seemed to enjoy, she's still not eating much but she doesn't look more worse for wear so I'm pleased.
Not much else to report we have clinic at QA tomorrow for more blood tests and doctor's review, so here's hoping that the lump stays down now that the antibiotics are finished.

7 October 2011

Good News - line site looks alot better

Paige and Sam took turns waking up every hour last night, Sam at 1.00am and in our bed then Paige at 2.00am and in our bed, out for Sam, then Paige again at 3.00am asking for milk followed by Sam at 3.15am saying there was a monster in his room. By then we gave up split forces and got some sleep :-)

When Paige woke up at 8.30am her line site looked really good and the lump seems to be gone based on my examination, she even ate breakfast for the first time this week and she even ate a bit of fruit.
Unfortunately but not surprising her neutrophils are still at 0.1 so she will not be able to start her chemotherapy on Tuesday, she needs a minimum of 0.75 to begin the next bit of this round of chemo.

that's it for now, looking forward to a quiet weekend

4 October 2011

The Wait and See game

Paige and I made the trip to the Day Ward today to have her line accessed. I must say that I was quite apprehensive and didn't sleep much last night but my precious daughter must sense that so she woke this morning and tucked herself under my arm and we just lay there a cuddled for about 20 mins, then she got bored and got of the bed.
Anyway Mary examined the line and so did one of the surgeons, they both believe that it may be the cuff but have advised that we should continue with the anti-biotics and give it a chance to work. Apparently we have been extremely luckily that Paige's line has been so good for such a long time. So that grand plan of action is that we wait and see how she responds to the anti biotics and see how she responds. We were also warned to be prepared for lots more infections, so it may be less smooth sailing from now off. Of course the timing couldn't be worse sine mummy leaves at the end of next month!
On the bright side Paige had her first curry and roti made by especially for her by her grandma and she absolutely loved it! But as the Trinis would say, she have a real 'meat mouth' she loves meat and won't eat anything else as long as meat is on offer.
So onward and forward as I continue to administer her anti biotics till Saturday

3 October 2011

Line site worsens

Paige is rapidly loosing her hair now, she's lost about 75% from her head, 25% of her eyebrows and about 15% of her eye lashes......but she's is still beautiful :-)
Anyway not so great news today, her line site now has a firm lump and is still a bit red, but it doesn't seem sensitive to touch and she doesn't have a temperature. So Dr Millard sent us for an ultra sound to start ruling out issues. Her ultra sound showed that it is quite a solid mass, rather than an accumulation of liquid or puss. The radiologist guessed that it might be her cuff that moved rather that any mass. Apparently a cuff is kept on the line when inserted so that it stays in situ, however since Paige was so little when her line was inserted it may have been cut and has now dislodged itself. The pediatric surgeon also had a quick look and he agreed that this may be the case. So we're off to Piam Brown tomorrow to see her lead consultant Mary Morgan and the surgeon that inserted her Central Line. Worst case is that the Central line may have to be removed and re-inserted, hopefully that's not the case. In the meanwhile she continues to have two anti biotics and does not have a temperature.

1 October 2011

Sunny Saturday

It was really nice to wake up in my own bed this morning and Paige must have been pretty pleased to be at home as well, she actually slept through the night in her cot till 6.45am! wow that's the most sleep either of us have had in months. She must have been thrilled not to be woken up at 2.00am for her IV anti-biotics. Next time she has a fever I am taking to the hospital at a more sensible time :-)
Even though I have now been taught to administer her IV anti biotics I chose to take her to CAU since this was only her second dose of this new anti biotics. Apparently you can have more of a  reaction to the anti botic by the second dose, not necessarily the first. Anyway her line was a bit red and swollen again so we asked for her to see the doctor on the unit. She asked for the consultant to have a look as well, so they've done another swab and we were sent home given that she doesn't have a temperature and she's on all the anti biotics required anyway.
So hopefully we'll have a nice quiet day at home tomorrow and I'll administer her IV anti biotics. I think that I've been to the QA enough over the last two weeks! In all of this Paige has kept her spirits up as usual and charms everyone, so much so that I think that we were discharged early because she doesn't look ill :-)

Out of the hospital now

Paige, unfortunately has been at the hospital since Wednesday morning at 1.30am, she had a temperature of 38 earlier in the evening that settled down at bedtime. Then at 11.00pm she woke up crying and didn't stop till 12.30. By then I gave her some codine and waited for her to fall asleep. As she drifted off I took once last temperature before putting her to bed. 38.4C. I called the CAU (Children's Assessment Unit) and headed down to QA knowing that we would spend the night. They started her IV anti-biotics as per protocol and gave her some Calpol for the fever. We finally settled into bed by 4.00am ish.

At 9.00am when we woke up Paige had a temperature of 40C so the gave her Calpol followed by some ibruprofen which apparently is ok if her platelets are good. She was given 4 hourly doses of Calpol to control the fever.
By midnight she had used up all her doses of Calpol and had a temperature of 40C again. She was absolutely miserable and hot. We waited till 2.30am and she was finally able to have Calpol again, after her IV anti-biotics. She woke up every hour on the hour crying.......
By 9.30am on Thursday morning we were both shattered and she had finally cooled down. We got out of bed and I remembered that I needed a new ticket for my car. Of course when I got there, I had a parking ticket! Anyway at least Paige's fever was down.
By Friday morning her blood cultures came back negative and her line swab showed the same bacteria that she had last week. Having had stable temperatures for at least 24 hours, she was switched to a once daily dose of anti-boitics and we were sent home - hooray!
Our stint at the QA was fine and PAige was absolutely spoilt by all the staff which included the outdoor doll house being scrubbed down so that she could play in it :-)
A big thank you to the Starfish crew - they were fantastic!