31 May 2011

May 31st - LP #6

Unfortunately Paige's neutrophils are still too low at 0.3 to start the Consolidation phase of chemotherapy, so she is now delayed by possibly another week. Her lumbar puncture however is not dependent on her neutrophil count so she had one today and will continue to have one per week for the next two weeks. We are told not to worry ...yet. Her consultant said to me 'wait till I'm worried and then you should worry'. She said that some children just take longer than others to recover. Additionally the risk of having Chemo with such a low count is that the neutrophils may take even longer to recover. So the plan of action is that we head down to Pian Brown again this Thursday, have another blood test and hopefully her count will be up again and we can resume treatment. Her white blood count is climbing steadily so the consultant expects that she should be able to crack on later this week.
I must say this is really a nerve wrecking process in addition to all the existing worries and frustrations, waiting for her neutrophils to climb up again with absolutely no ability to influence the process is almost unbearable.
On the bright side, Paige is growing stronger every day, she's crawling around at a decent speed again, pulling herself up on the furniture and even climbing the stairs, closely supervised of course. I think that her favorite pastime though is taking Samuel's toys and being the good big brother that he is he lets her take them, then complains to me!
Sam celebrated his 3rd birthday on Sunday and got an unusual amount of presents, he loved every minute of his small birthday party and especially his cake and 'party things'. Our little, big boy is a very empathetic big brother who always make sure that his sister is 'nice and safe' and reminds me to be careful with her tummy because she has a really big ouch, (her Central Line). His favorite expressions are "mummy speak to me properly" and "you need to have more patience mummy".
It's quite heartening to watch the interaction with Sam and Paige as she begins to mature and become more of a little person and less of a baby, after all she will be One in exactly two weeks time.
So fingers crossed that Paige will be able to resume treatment this week and that her bone marrow begins to grow neutrophils.

26 May 2011

May 25th - Our first overnight at Queen Alexander

The regional pediatrics oncology center in the south is located at the Southampton General Hospital, at the Piam Brown ward. They however only have 10 beds and is usually kept for those located locally, new patients and really ill ones. We are 14mins away from the Queen Alexander hospital which is located in Portsmouth and is therefore our 'shared care' hospital and where we need to go for emergencies and any other treament that doesn't require going into SH. Having said that because Paige wasn't eating and definitely not drinking combined with diarrhea and a hot day I was concerned and so was the consultant when she saw her so we were admitted for her to have IV fluids overnight and wait and see.
If you think taking care of a baby with leukemia is difficult, try taking care of one who is in the process of  teething! Of course if she has sore gums she won't necessarily eat/drink and possibly have loose stools however these are also symptoms of an infection and since she is neutropenic, I thought that the best thing would be to take her down. We were admitted and she was miserable and crying, she eventually fell asleep at 9.00pm then woke up screaming at 11.30pm. At this stage the nurse suggested that we give her some paracetamol, which I said we couldn't given that we were expecting a temperature, anyway we gave her some codine and she slept through till 7.00am. This morning when we were playing and looking in her mouth for possible sores/irritation we saw 4 new teeth popping out :-) . That's now 8 altogether in 4-6 weeks!
The consultants at this hospital seem to know what they're doing but the nurses not so much. Paige has now has 4 new dressings in 2 days because they just can't get it right, and it's still not right but I couldn't allow them to distress her anymore. Of course I've spent my life being responsible for how to do things properly and this is no different. I got comments like "Mum is on the ball" of course I'm on the ball! Paige is a precious, one of a kind baby! Of course I'm prone to be a bit harsh given the perfectionist that I am. Also Paige is admitted onto a general pediatric ward not an oncology ward, so the nurses are necessarily trained for this which gives me even less comfort. I've also spoken to other parents and they've noticed that they tend to make mistakes quite often so we need to be very diligent when staying at the QA with our little one.
On the bright side we always get a private room with an en-suite and I get to sleep on a bed that is 2 feet wide, if I need to turn, I'll probably have to step off and get back on! but it does beat sleeping on a chair in a 4 bed bay!
Anyway we got lots and lots of giggles and I think Paige heard the consultant say that if she drank a min of 50mls we would be discharged. Of course Paige drank 50 mls of water straight after she left and also had about 80mls at her afternoon feed, compared to nil on the previous days.
So I've chalked up this whole experience to teething, luckily she wasn't started on antibiotics. She's now at home and asleep in her bed like an angel.....

24 May 2011

May 24th - QA Bloods and Review

Paige has now almost completely refused to drink her milk, literally pushing the bottle out of my hand and onto the floor. She also wakes up at least 2-3 times at night for a cuddle but not some milk. She also refused to have both lunch and dinner yesterday. Today I had a bit more luck by offering her peas to play with as I slipped some vegetables in which she opened for the peas!
Based on our visit today the doctor has suggested that the steriods disturbs the lining of her stomach so she must be in pain therefore she's not eating or drinking cause it hurts too much. So she now has a new medicine and hopefully her appetite will return. In the meanwhile we still have lots of smiles and peals of welcome laughter from her.
Her blood results today were worse than yesterday because her neutrophils are now down from 0.6 to 0.5, so she will need to have another review and bloods on Friday and more bloods on Monday.
The doctor urged me not to panic about the delay in her treatment....but what else is a mother to do? If she still does not have a minimum of 0.75 by Monday, she'll need to have another bone marrow to find out what's going on/wrong.

23 May 2011

Consolidation - delayed

Paige's neutrophils are 0.6 and she requires a minimum of 0.75 to have Chemo, so her treatment will be postponed for a week. So for the first Tuesday in the last 5 weeks, she will not be subject to a lumbar puncture and overnight starvation. It also means that she will most likely be spending her 1st birthday in the hospital receiving a lumbar puncture (LP) and chemo. This phase of treatment requires 3 successive LP's and intensive Chemo. I am quite disappointed that her treatment will be delayed but I'm sure that she is quite happy not to be poked and given intensive chemotherapy that will make her ill. She probably just wanted to be well and in good spirits for Sam's birthday on Sunday !
She's now got about 5-10% of her hair left but she is still gorgeous and in such good spirits, laughing, moving around and pulling down anything that she can get her hand on. The downside is that now that she is off the steriods she's neither eating or drinking enough :-(.
So we now have a  week off of no chemo so that she can recover. She is also neutropenic so we should ideally avoid crowded areas, which means stay at home.

Treatment Overview

As mentioned before Paige's treatment will last 2 years and is broken up as follows:

Induction : 5 weeks - Completed and Remission achieved

Consolidation : 5 weeks -(must have platelets>75 & neutrophils>0.75) Chemo 4 times a week for 3 weeks

Interim Maintenance 1: 8 weeks - oral Chemo at home and a chance to recover

Delayed Intensification 1: 7 weeks - (must have platelets > 75 & neutrophils > 0.75) Nuff Chemo again

Interim Maintenance 2: 8 weeks

Delayed Intensification 2: 7 weeks - (must have platelets > 75 & neutrophils > 0.75) Nuff Chemo again

Maintenance Cycle 1: 12 weeks

In order to progress through the stages, there is a minimum requirement of platelets and neutrophils as noted above, essentially she ought not to have Chemo is she is unwell. If she gets ill at anytime during the Chemo intensive stages, treatment will be delayed. It is expected that she will become ill during the intensive stages. In addition to Chemo she has steriods, anti sickness after chemo and preventative antibiotics every weekend. So we have a house full of drugs, syringes - the works. Oral Chemo can be given at home by us.
There are also 'community nurses' who will come at home to take bloods, change her dressing etc to minimize trips to the hospital. They can also administer some Chemo and antibiotics via IV if Paige has an infection but doesn't require hospitalization. Paige is also a VIP patient at The Queen Alexander hospital, which means that she always has set appointments or we call ahead in an emergency and say that we are on our way and she is ushered into a private room immediately, we do no have to sit and wait in a general waiting room (because she will spend the next two years with compromised neutrophils).

18 May 2011


As my beautiful daughter continues to test my response time to her needs, she developed a temperature and redness around the exit site of her Central line today, 10 mins after my car was sent in to have a couple of things done. Even though the garage promised to have the car back as quickly as they could the hospital preferred that I bring her in sooner rather than later. The consultant greeted her with "hello trouble", two and a half hours later we were sent on our way with some oral antibiotics. Paige has been responding very well to her Chemo and hasn't needed a blood transfusion since inception, additionally based on her recent blood tests, her body is making it's own white blood cells and neutrophils - yay!!
Poor thing she's loosing her hair rapidly, but her laughter and giggles have returned so that's as good a trade off an any in my books :-)
On to the good news now, Paige had her 5th Lumbar Puncture and 2nd Bone Marrow test done yesterday, her consultant called late this afternoon to share with me that she could not see any leukemic cells in the marrow and Paige had now achieved remission during her Induction. Her spinal fluid was also clear. She also advised that her blood looked quite good and she was pleased that Paige was making white blood cells and neutrophils. The goal of induction is to achieve remission and Paige has been extremely fortunate that she has been well during the entire time - again thank you to everyone who has said a prayer for our sweet Paige, it's working so please continue to pray for her :-). The proof of the pudding will be the results of her Minimal Residual Disease (MRD) which will take 4 - 6 weeks, this will aim to measure her response to treatment and whether it needs to be more intensive. The presence of her CNS Leukemia continues to be a huge worry and gives her a poorer prognosis.
The next phase of her treatment is Consolidation and starts next week Tuesday with a Lumbar Puncture, and two other types of chemotherapy. Chemo continues for three days after that, so whereas she had chemo once per week, she will now have chemo 4 times a week. We have been warned that she has had really smooth sailing so far and she will become ill with all the drugs in this phase :-(

15 May 2011

Laughter on Sunday

For the first time since Paige has been diagnosed we've had giggles and laughter from her - What an amazing welcomed sound. She was also quite pleased with herself when she could pick up her ball and show it to us. She even crawled around a bit and tried to push around Samuel's toys, all four of us sat around on the floor playing with the ball and the cars and for just a few minutes life felt normal again :-).

Blocked Central line

We've spent at least one day at QA every weekend since Paige has been discharged and this weekend was no exception. We got there at 10.20am and still no blood dispite the medication the day before and the various positions bar hanging her upside down. Next step was an X ray to see whether the line was dislodged, X ray showed no signs of that so they tried again, this time with a larger syringe and presto we have blood!
I firmly believe that Paige decides that she needs to keep us on our toes:-) Anyways her bloods are still holding and a transfusion is not required, her neutrophils are up to 2.1, but we were told to still treat her as Neutropenic as the steriod can give her a false good result.
So at 4.00pm we took out little sumo wrestler who now weights 10kgs home for some much needed shut eye. She'd been awake since 6.00am and hadn't had a nap since. She continues to look well but is still quite grumpy from her steriods and also has disrupted sleep. She is being weaned off the steriods from Thursday of this week so that her appetite is weaning down as well.
Happy 11 months Paigey Lou :-)

Friday 13th

I'm not usually a superstitious person but I did take note of the date when an appointment was made for Paige to have follow up bloods and a review on Friday. Anyway so we all headed down to QA (mummy, Sam, Paige and I). They did the usual stuff, then when it was time for bloods nothing, so we jiggled her around made her stand, then sit, still nothing. The consultant explained that sometimes the Central line can get a clot so that they need to apply some meds and leave for her for 24 hours. Of course the protocol is that once the medication is administered we need to stay for an hour. We stayed our hour and of course I got to the car and yup there it was a parking ticket because our routine visit turned into 3 hours!
Paige is still in good spirits though and looked well so we were sent home to return on Saturday to try again. This is her first blockage since her line was inserted on May 14th. Trying my best not to worry but the doctor reassured me that it was an 'occupational hazard' and that I should not worry.

12 May 2011

LP Results

Her LP results showed no sign of the disease as of yesterday....Dr Morgan who is her consultant hematologist who by the way is an absolute superstar called me yesterday afternoon to relieve my anxiety. (When Paige had her first LP Dr Morgan stayed till 8.30pm the night before Easter Weekend to share the results with me because she knew that four days would be much too long for me to wait.) She is the lead consultant for the unit and also heads up the research team for the southern region.
Next Tuesday is Paige's last LP,  Bone Marrow test and Chemo for this phase of treatment, it is expected that she should be in full remission by that time. So fingers crossed and keep praying..... Her next phase of treatment will also be shared with us.
She's been in really good spirits yesterday and today singing and saying new baby words that I can't understand, it's odd that her best days are the days after Chemo :-). She's now got what they call 'dex cheeks' which are fat cheeks as a result of all the steroid called Dexamethasone that I am currently giving her.

11 May 2011

LP & Chemo 4

Paige had her 4th LP and Chemo yesterday, so she got all dressed up in her pretty pink frock and we headed down to the hospital. I've decided that we'll take a holistic approach to this illness if we look good and feel good we can handle anything! :-) Of course the anesthetist didn't share this view and was quite rude and insensitive asking me to remove the frock so that she could find 'a little bit of baby among the sea of pink', anyways lucky for her my child's life was literally in her hands so I held my tongue.
Paige was particularly cranky after her LP but perked up after she had some paracetamol, so we stayed for the Chemo as well. 

9 May 2011

Happy Mother's Day

Mummy arrived on Friday and so she missed Mother's Day in Trinidad today, so Paige decided that she would start the day with a temperature of 37.5C just to keep us on our toes! The protocol is if she has a temp of 37.5C check it again in an hour and if it rises to 38C call for advice or 38.5C take her to the hospital for intravenous antibiotics. She doesn't usually have a temp of over 36.8C or thereabouts, so a temp of 37.5C for over 3 hours is unusual for her, this combined with a very cranky baby made me call the hospital and after discussion with the doctor we agreed that we should take her down. All tests came back fine and we were released. As it turns out she maybe had a toothache, (because her two front teeth have now come through) or jaw pain which is a common side effect of the Chemo she had on Wednesday. They gave her some Codine and it returned her to normal. We even got some giggles and smiles :-). Unfortunately for me I don't have the luxury of guessing that a temperature could be associated with teething. She is smiling and moving about again today.
Tomorrow will be a rough day for her, she has a lumbar puncture in the morning and 'big' Chemo for the 4th time, in the afternoon. So she will be sore and cranky poor heart :-(


8 May 2011

Ear or arm?

Paige has been Neutropenic for some time now, which means that we need to be super-vigilant: if she has a temperature outside of the normal range (36-37C) then she may need to go straight to the hospital. At 37.5 we start to get worried and at 38.5 get in the car (also 35 is a problem. But how do we measure her temperature with such accuracy.

When we were in Trinidad the doctor said that the most accurate way to take a body temperature was via the rectum. Fortunately, Paim Brown believe that the underarm (axillary) temperature is the best. So, although we have an (expensive) ear thermometer, we invested (a whole £9.95) in a small digital one with a probe.

Actually, knowing what we are like, we bought two - one Braun and one Boots. The problem is that this morning they gave two different readings. Then we got a third reading in her ear. One reading was 37.5C - just on the cusp of anxiety. Do we call the hospital? Is she feverish or not? How long is a piece of string?

An herein lay a lesson: the actual number was less important than Paige's overall wellbeing. She had been cranky and lethargic - plus she has only had a fever one other time in her life. If she looks unwell, hasten to a hospital. So we took her to QA in Portsmouth, and the consultant was happy that we came, even though Paige did not meet the strict criteria for admission, because it's impossible to be too careful.

The result was a CRP of 4. They gave her some Codeine (which cheered her up right away!) and did a raft of other tests while we were there (including her temperature, in the ear). But no harm done (apart from Lisa got peed on...long story) and the end result is that we are back at home, safe and sound.

Also, we will be using the ear thermometer from now on, unless Paige has a fever and is clearly unwell. If it's good enough for QA, it's good enough for us.

7 May 2011

Peg Day

Paige had her Peg Asparaginase yesterday, a drug which is given  via an injection into the muscle of her thigh (quite unpleasant), after which she needs to be observed for one hour in case of a fever or rash. None of those were present so we were sent on our way home. About an hour later we were asked to bring her back in for another blood test, because her previous bio chemistry results showed abnormally high levels of Urea and Creatinine, which could be a result of dehydration (or worse kidney problems). Consistently high readings would require her to on an IV again. Luckily her 2nd test showed results back to normal and we got to spend another night at home. Follow up tests done today were much lower so we're in the clear - MUST keep those fluids up.

Paige is now showing signs of visible fatigue and her thighs must also hurt because she refuses to be held up to walk, poor heart. This is an expected side effect of one of the drugs Vincristine and her eventual walking may be delayed, but we're told she'll catch up. Her hair is still beautiful, long and a lovely dark brown, not looking forward to the next couple of weeks when it might fall off :-(

5 May 2011

Chemo 3, LP and BM Results

First of all, thank you for all the prayers, e mails, text messages, cards and general well wishes that we have received from our family and friends - it means so much to us and is very uplifting during those sad moments.
Paige had her third lot of what I call Big Chemo yesterday, which is Vincristine and Daunorubicin, and she was quite happy, smiling and playing this morning. She even wandered around the lounge pulling and throwing everything on the floor - nice to see her back to her usual self, even if it was just for 10 minutes!

The consultant phoned yesterday with good news: there was NO evidence of the disease in the Cerebral Spinal Fluid (CSF) prior to the administration of her chemo yesterday (via LP) and most of all her bone marrow seems to be recovering and producing small amounts of platelets and white blood cells. While this is not considered remission, it is an indicator that she is responding well to her chemo - which is great news! She continues to look well albeit pale, and we're still enjoying being at home.

3 May 2011

Lumbar Puncture 3 and Bone Marrow 1

Paige had her 3rd Lumbar Puncture and her first bone marrow test done today, along with a small dose of Chemo, she was pretty shattered after-wards but of course it was still difficult to keep her still for the required hour after the procedure was done! Her Hb is still low at 74 and the doctors debated whether she needed a transfusion or not, in the end they decided that she was ok and that they would delay it for awhile. I think that it's starting to wear her down now though cause she tired and doesn't want to move around much, but my beautiful girl still manages a smile especially for her daddy :-)

1 May 2011

First Weekend at Home

When the consultant said that she we could go home for the long weekend I couldn't believe my ears, I later asked the lead nurse and she said that we could only go home if she was happy that I had been adequately trained on how to take care of her and her central line etc, and that I could administer her drugs. Of course I am a quick study so that I nailed that pretty quickly. I was so excited to go home that I couldn't sleep and was out of bed by 5.45am, of course Paige had a lie in till 7.45am!
Anyway we didn't leave the hospital till 7.00pm on Thursday and of course the nerves set in just as they do when you're taking a new baby home for the first time. Essentially I need to be the nurses/doctors eyes and ears, so I have to monitor Paige, taking her temperature regularly and of course administering her drugs as per the Induction chart that Russell posted earlier. Giving her steroids, anti fungal meds daily and anti sickness as needed and anti biotics on weekends only. (for those that know me well, yes we have an excel spreadsheet)
We still need to be in the hospital on Monday (blood tests) , Tuesday (limbar puncture and bone marrow), Wednesday (Big Chemo) and Friday (more Chemo), but at least we're at home and she is so much happier :-).
The results of her initial lumbar puncture showed evidence of the disease in her central nervous system, which was not good news, so she will need chemo via a lumbar puncture on a weekly basis.
Her prognosis has not yet been shared with us, so fingers crossed that it will be good when all the factors are considered.
Mummy arrives on Friday to stay with us so that will certainly ease the burden not to mention nice home cooked meals.