Ate solid food today

For the first time in about 10 days, Paige actually had some real lunch, a risotto with squash and spinach, and she even had a fromage frais after wards! I suspect it had something to do with her 3 hour nap. She was quite clingy today and she is starting to look quite tired and pale. The cumulative effect of four weeks of Chemo seems to be taking it's toll and her hemoglobin is down to 72, so I suspect that she may have a transfusion soon, it also explains why she had a 3 hour nap at mid morning. It's so amazing to watch her though, she's tired but doesn't want to miss out on anything and also wants to maintain her independence by climbing up the stairs for her bath. She seems to be longing for a bath in the big bath with Sam but I suspect she can't till her neutrophils are back up again.
Tomorrow is her last dose of Cytrabine for the week and she goes on to some much needed maintenance so that her body can heal itself for the next onslaught of intensive Chemotherapy in 5 weeks time. With the combination of her inner strength and all the love and prayers that she is blessed with, she'll get through this phase and be ready for the next!

MRD Results

Don't know how Paige is managing this but she now weighs 10.25kg up a wee bit by 0.1kg from last week, which is  a miracle considering all she has is breakfast, small amounts of formula and Gerber puffs that her Uncle Kevin sends for her. She was also in the mood for some Doritos today. She went into the snack basket as I was packing away the groceries and my cheeky daughter managed to press on the packet and open it up I met her on the floor eating Doritos and of course it was all over the floor! She greeted me with the most beautiful smile though :-)
We headed down to Piam Brown today for the 1st dose of the final lot of Cytarabine this week, as well as a doctors review, and of course the usual catch up with our friends, Joseph and May (the two other infants) and our other friends that we've met along the way. Sam accompanied us to the hospital today and made sure to keep his sister 'nice and safe' as well as tell everyone don't touch her unless their hands were clean! We saw Mary today and she shared the good news ** Paige's Minimal Residual Disease (MRD) is quite low, this means that she is responding very well to the level of chemotherapy that she is being administered. Other literature that I have read suggests that a low MRD is a good indicator but not a guarantee that she has a good chance of being cured. Dr Morgan can't commit but advised that she has seen cases with a low MRD  where the disease has returned and cases with a high MRD where a cure was achieved. For now we're just ecstatic that her MRD result is available and low.
As expected Paige's blood is almost wiped out and she may require a blood transfusion by the end of the week, blood tests will be done again on Thursday afternoon and a decision made on Friday. She be back at QA for a doctor's review on Monday, so if not this week, definitely by next week.
She's asleep now tired from the day's events of the usual dancing, playing with Sam, climbing the stairs and playing with her Mama and Papa Boyz. Of course even though she was knackered she refused to go to sleep at the appointed time because she knew that we were celebrating her 'Mama's' birthday and wanted to be there to sing along and dance. So we'll end tonight by saying a big Happy Birthday to Paige's grandmother who likes being called "Mama" .

Baby got new shoes

I finally braved it to the shops today with Paige so that she could finally get her first 'proper pair of shoes' and yes she definitely has her father's feet, at a size 4G, quite unfortunate really, but there's not much that I can do about it. The plan was that I get to the shops early when it's less crowded, given that she is still presumed to be neutropenic. Not a chance, we got to Fareham at 10.30am and it was absolutely heaving. Anyway I think that Paige loved being somewhere other that the hospital and our house and it was an absolute scorcher today at 26C at 10.30am!
She's losing a bit of weight now, and she is slowly starting to eat again she had strips of toast and broccoli for lunch today. She also wants to feed herself.
Paige is still extremely fortunate that she is so well. She crawls around on the floor, fights with Samuel, tip toes so that she can get into mischief and she particularly likes being on the trampoline! All the while becoming more and more vocal.
She starts Chemo again tomorrow, Cytarabine at Piam Brown and that continues for 4 days. This is the last week of this type of Chemo and consolidation ends this week. She may have a week off next week and she then goes onto Maintenance which will last for five weeks.
We are still anxiously awaiting the results of her MRD (minimum residual disease) which is now way overdue. I'll be checking again when we are at Piam Brown tomorrow. Will keep you guys posted.

Grandpa is here

Paige's grandfather know as "Papa Boyz" arrived today and was greeted by a cheeky smile. Then the suitcase was emptied and it was like Christmas for the kids with lots of pressies from the family in Trinidad! Even mummy got early birthday presents and we got Gail's lovely treats. Even the community nurses were pleased with the treats especially since they were working flat out today. Sister Sharon had a rumbly in her tumbly! It's wonderful having daddy here and by dinner time he was feeding Sam while entertaining Paige so that I could have my dinner :-). Paige obviously remembers her Papa and is giving him lots of her special smiles.
She had her 3rd dose of Cytarabine today and we've now restarted her oral chemotherapy at home, a drug called mercaptopurine, which miraculously enough Paige is quite happy to take! this is after refusing all oral meds for the past two weeks. Her appetite is slowly improving and she is quite willing to drink water from her cup several times a day now.

Paige has developed some small spots on her arms and we are keeping a close eye on it for any signs of them increasing, any temperatures or if the spots become red or filled with liquid. She has 7 in her left hand and 3 on her right. As at the end of today, none of the above have happened.
I requested training so that I could flush her line myself and it began today, I must say the details are much more involved that the nurses make it look! So I've got all my kit to practice drawing up the stuff and I'll get to try it out next week I believe.

Cyclophosphamide Dose 2

Paige had a really long day today which started at the QA hospital. The little madame decided that she'd had enough of the cot at 4.00am and we then shared my 2ft cot bed. That really wasn't much fun. Anyway Paige's great aunt came all the way from New York to see her and other things on a brief 5 day visit to London and what do we do ? spend the night at QA while Aunty Elsie spent the night at home.
Anyway we spent a long but quite pleasant day getting to know May, a beautiful baby girl and her Mum Amy. We've met so many wonderful families along the way and it's simply obscene how sick all these beautiful children are, many with a very rare type of cancer.
It reminds me how fortunate we are that even though Paige is afflicted with this horrible disease, so far she has been relatively well and responding to her treatment. She is still extremely active and everyone on the ward today noticed how vocal she has become! She particularly loved when the clowns came round her bed for a visit.
After spending the day and getting up to date with everyone, I'm filled with too many emotions that are quite difficult to express, so I would like to ask that everyone praying for Paige please add baby May and little Abigail to their prayers for tonight.

Day 70

We are now in week 3 of the Consolidation phase and tomorrow Paige will have her second dose of cyclophosphamide, a particularly nasty drug that requires four hours of hydration. As you can see from this picture, none of this has stopped her from progressing onto big girl food and devouring a chicken leg like the half-West Indian that she is!

In the meantime tonight, after she had had her bath and was refusing to sleep, I noticed that the exit wound of her line was inflamed. In fact, it had bled very slightly. This, of course, required an immediate call to the hospital and, inevitably, a trip to the hospital. The nurse changed her dressing and by then the bleeding had stopped, but the flesh was still red. The big risk here is infection (specifically, bacterial), but it is difficult to spot: with her low neutrophil count, the wound will not secrete pus in the normal way, making it look less serious. But equally the redness could be due to her tugging at the line. A high temperature is the best indication of an infection (hence why we almost never give her paracetamol) but Paige's temperature was normal. In fact, she was bouncing around the room.

Given the infection risk, the doctors wanted to start her on Flucoxacillin, an antibiotic with onerous guidelines. She has had this before and it did not seem to do much, except put her off her food. Plus, Lisa and I were sure that she did not have an infection. In the end, we compromised by agreeing to keep her in the hospital overnight in case her temperature spiked. So she and Lisa are sleeping at hotel QA tonight. Which sucks, but at least it's only a precaution.

Russell

June 19th - Happy Father's Day

Paige climbed onto our bed all by herself  this morning! Milestone for her :-)
Quite an uneventful weekend, she had her 4th dose of cytarabine at QA yesterday and we came home, her appetite is a bit diminished but I've come to expect that after 4 doses of Chemo. She'll have her drug free day tomorrow and hopefully eat better. She's looking really well despite her low hemoglobin (89) and neutrophil count (0.4) and continues to be so active and alert, climbing the stairs every chance she gets when the stair gate is open. One of her favorite pastimes is emptying all the items from the bottom shelf of the occasional table in the kitchen.
We celebrated father's day with a spinach, artichoke dip, followed by stewed pork and mummy's yummy roti. We ended with a peach cake for dessert. Sam decided that we should have a cake since it was a day of celebration, he obviously liken the day to a 'birthday'. We were all sitting at the table merrily having lunch, when Sam raised his cup of juice and said "Cheers everybody", he obviously knew that it was a special occasion and that he should wish his dad a happy father's day. Sam continues to amaze us.

June 17th

Day 3 of Cytarabine and Paige seems completely oblivious to the fact that she's having Chemo. Her appetite continues and she's drinking enough, can't ask for much more! She's started climbing onto things now and goes on her tippy toes to try and reach things. It's really quite funny to watch her try to reach stuff then of course she can't and gets frustrated. She's also pointing at things and saying something that resembles 'dat', must be the Trini blood.
She seems to be bonding more and more with Sam, it's beautiful to watch them play together now. Of course every time Sam wants attention now he says "mummy I'm not feeling well", and this happens roughly 10-20 times a day.
The second most asked question of us is "how are you coping" and the answer is simply, "we haven't got a choice". Paige doesn't know that she sick and we haven't told her so sssshhhh. Sam's very switched on but I'm not sure how much he understands. So I keep busy with the everyday chores, and Russell goes to work, and we live day by day because every one is so different. It's very helpful that Paige is so active and alert so she gives us that much needed boost to keep going. It's also very reassuring that the medical support and in particular Paige's consultant Mary Morgan is the best in her field in the region. The Piam Brown team  is fantastic, not just with medical support but particularly with moral support as well. The nursing team listens and they try to help with all questions. An e.g was my concern about Paige's eating, Liz, one of the nurses spent an hour giving me ideas of how to deal with simple things like where to sit her, trying various portions snacks etc, and most importantly staying calm and relaxed during meal times. This was despite the fact that she's maintaining her weight and in the 75th percentile for her age. Then I got a call from the nutritionist the next day! Talk about follow through. They also make sure that we always have all the kit that Paige requires, sometimes when I'm leaving the hospital I think that they'll stop me because I have so much stuff !
So in essence we have the unwavering love and support of our family and friends, a qualified and compassionate medical team and of course our beautiful daughter who continues to give us strength and courage by her beautiful smiles and nonchalant approach to her illness.

Posting comments

Many people have told us that they have had difficulty posting comments to the Blog. Blogspot accepts several different profiles: Live Journal (www.livejournal.com), Wordpress (wordpress.org), Typepad (www.typepad.com), AOL (openid.aol.com), openID (openid.net) and, of course, Google. 

However, after a bit of research, I have now changed the settings so that anyone can post a comment without needing one of the profiles above. Sorry for the confusion and we look forward to hearing from you.


RusS. 

June 15th - Chemo 2

Paige is looking really well, so she started her second course of chemo, Cytarabine today, all went without a hitch and she was given her anti sickness via her line as well. She actually had two good meals today and managed to drink above her required 600mls per day and yes I do maintain a daily food and drink chart on excel :-).

So far so good I'm happy if she has at least two good meals a day and continues to look as well as she does, she is also maintaining her weight.....

Almost forgot, Paige picked up Sam's drummette today and started munching on it!

June 14th - Happy Birthday Paige !

My little sweetie woke up at her usual 4.00am and wasn't too pleased when I offered her water! On the days that she has a Lumbar Puncture she has a general anesthetic, so that means last formula by 2.30am and last water by 6.30am. She was really grizzly so by 4.22am I gave in. Of course this meant that she could not have her procedure till 10.30am.
Anyway we woke up late i.e 7.00am, (we should have left home at 7.30am) but we all sat on the bed and opened presents, it is her birthday after all :-). She wore a beautiful red dress, a gift from her new Aunty Laura - thank you.
When we arrived on the ward her nurse Barbara sang Happy Birthday to her while her observations were being done. Later when she went into the treatment room everyone stopped and wished her a happy birthday, I believe they sang to her as well, but I tend to be a bit distressed when she's having her anesthetic so I can't be sure. I must say everyone on the ward made her morning very special, there was a gift and card signed by all the staff on the ward and she got presents, cards and well wishes from everyone that she came into contact with on the ward - Thank you to everyone at the Piam Brown ward you certainly made what could have been a very difficult day very warm and precious for both Paige and I. I now have renewed faith in humanity. I know that Paige loved all the attention and gifts from the broad smile that it all evoked on her face. Almost forgot, Paige's neutrophils are back up to 0.7 today so will continue with her block of 4 doses of Cytarabine this week, starting tomorrow at home, along with anti-sickness given via her line, since my little Miss has decided that she's having a break from her meds for now :-)
We came home to more presents and cards and we had a small celebration (below), then Paige tired from the day had a quick bath and was in her cot and asleep by 7.00pm. She's such a strong, brave little girl, what a 1st birthday for her.

June 12th - Rainy days are here again

Paige is still not sleeping through the night and readily scoffs at her food but we must press on! We headed down to Paim Brown today for her 4th dose of Cytarabine, we almost needed a boat it was raining so heavily! What should have taken 20 minutes, managed to stretch out to nearly 2 hours. Paige's line site was a bit red and crusty so I asked that the senior sister look at it because she looked at it yesterday as well. Unfortunately she was on ward rounds with the doctor soon after we arrived so we needed to wait till she was finished. In the end they changed her dressing and took a swab to send to the lab, one can never be too careful when it comes to caring for the Central Lines, as it can easily become infected. We spent the time catching up with our friends on Piam Brown and wishing Abigail another oncology patient who was diagnosed the same time as us, a happy 6th birthday. Sam especially made the trip to the hospital with me so that he could give her the presents.
Paige is in bed now and already woke up screaming 45 minutes later, poor heart she must not be feeling right but cannot express what she needs or feels. If her food/drink and medicine rejection continues I'm afraid that we'll be going down the route of a food tube.....
Her week will begin with a quite day tomorrow, followed by her 8th Lumbar Puncture and 1st Birthday on Tuesday :-) Then Chemo for the next 4 days as long as she is well, regardless of her neutrophil count.
It still hasn't stopped raining.

June 10th - Chemo Day 2

Paige actually slept through most of the night last night but woke up at 5.00am. She eventually fell asleep again at 6.30am and woke up at 9.00am. She seemed a bit uncomfortable but perks up after her anti sickness drugs. The community nurses arrived 15 minutes after she fell asleep at midday and they were doing a really good job then at the last couple of seconds she woke up!
Sam was out for the day so Paige and I spent some quality time together, she really loves to play now and giggles and laughs so loudly, I can tell that she is a bit unwell at times but if you distract her she soon forgets about it. She's now had two doses and seems to be doing well and hasn't been sick, but of course she's not eating much. She'll be really excited when her Papa arrives on June 23rd. Daddy is coming over for a month - yipee! Really looking forward to that :-)
We got so many calls from Trinidad yesterday and today asking about Paige, it's so wonderful to have family that takes such a keen interest Paige's progress. Great to hear from you guys.
Also Paige's uncle Curtis has named his new horse after her, the horse's name is "Princess Paige".
Chemo continues tomorrow and Sunday at Piam Brown, not long now till her 1st birthday .........
Oh - my parking ticket that I received when Paige's line was blocked (85quid) has been canceled based on my appeal. 

June 9th - Consolidation begins

Paige wore her beautiful dress from her Aunty Gail today and we headed down for Piam Brown, a rather uneventful trip and Paige slept all the way, because she was up from 2.30am to 4.30am and then for good at 6.05am. The staff were ready for us and her blood was taken within minutes and sent down to the lab. The ever passionate Mary went to the lab herself and sat with the technician and evaluated the results. Her sample was clear and there isn't a relapse - THANK GOD. So even though Paige's neutrophils were 0.3 Mary gave the go ahead to start her consolidation because she was happy that her blood was recovering albeit slowly. So she will not be given any further oral chemotherapy drug Mercaptopurine as per her protocol because by the process of elimination this is the most likely cause of her low neutrophil count. This has happened to another patient previously, so they're not surprised.
So she started her Consolidation phase today with a drug called Cyclophospharamide and cytarabine. Cytarabine will continue over the next four days and we have been warned that she may become ill.

It's a go

10:00 - Paige's Neutrophil count is still only 0.3, but Mary had decided to go ahead with the second stage of treatment. This is on the basis of good counts of WBC, Hb and platelets, and also because the bone marrow sample taken on Tuesday was clear.

The first step is a dose of cyclophosphamide, which will take 6 hours in total. She will also have oral chemo for the next four days.

Russ

June 8th - Still waiting

Paige woke up again at 2.30am this morning for some milk, a poo and lots of cuddles for nearly 2 hours, then decided that she should go back to sleep. She woke up twice after that for more cuddles but Russell went to her instead and I got a wee bit more sleep. I spent the day keeping busy and trying not to look at the clock all day. I caved at about 1.30pm and called but there were still no results. I called again at 5.00pm. Finally Mary called at 5.35pm and apologised because the results were still inconclusive. Apparently the senior technician was not available today and the ones that were there could not adequately interpret the results, the seior person will be there tomorrow and hopefully we'll have some clarity. Mary shared my frustration because she is also quite anxious to have the results. It is so reassuring that Paige's consultant takes such a keen interest in her and is so passionate about her work.
I should mention that even though Paige isn't eating and drinking much she has managed to gain 0.2kgs over the last 10 days, so I guess she's making the best use if whatever she ingests!

So Paige and I will head down to Piam Brown again tomorrow for 9.00am sharp hoping that she has a minimum neutrophil count of 0.5 so that she can resume her treatment.
We continue to be heartened by the keen interest with which you guys follow Paige's blog and the follow up e mails/text messages and phone calls that we get. Paige is such a lucky girl to have so many people who are rooting for her to be in good health, and of course providing invaluable support to us :-)

June 7th - Bone Marrow

Paige hated her lumbar puncture and bone marrow today, but then again who would. She's more unsettled after each successive lumbar puncture and today was no exception. She is supposed to lie still for at least 1 hour after she's finished but instead she woke up 15 minutes after being out and cried uncontrollably for the next 15 minutes until we gave up and the senior nurse told me to just hold her up if she would be more happy. She seems to be more aware of the after pain now, as she does the taste of food or rather she may have an odd taste in her mouth but who knows? she certainly can't tell us.

The results of Paige's bone marrow today was inconclusive and her consultant has now requested a Flow Cytometry (this a highly specialized instrumentation science, that uses fluorescent probes to identify and characterize cells) to determine whether the 'blasts' seen are normal or abnormal. If the leukemia has alreday returned after only three weeks, that's not good news at all, and the consultants whilst extremely honest preferred not to speculate. So we'll try our best to get some sleep tonight and hope that the consultant doesn't have a really busy day tomorrow so that she can phone us with the results.

Having a baby with leukemia is difficult, knowing there is a potential cure is comforting, responding well to treatment gives us hope and then everything comes crashing down again when there is this much uncertainty all over again. It just doesn't seem fair.

June 6th - still no neutrophils

We made yet another another trek down to Piam Brown today, hoping to start Chemo and we were completely stunned when Paige's blood results showed that she had absolutely no neutrophils, yup a score of ZERO. Mary, her consultant spoke to us and though willing to start Chemo at 0.5 instead of the min of 0.75, she could not approve Chemo at 0. So Paige will have an unscheduled Bone Marrow test done tomorrow to see what's going on, along with Lumbar Puncture No 6.
The possible reasons for such a low count are:
1) she hasn't recovered from the last oral chemo that was given
2) she could have an infection, but she doesn't have a temperature so we could rule this out - I think
3) she has had a relapse, Mary thinks that this is unlikely so quickly since the last bone marrow done 3 weeks ago was quite clear.

So we continue to wait with little clarity as to why this is happening or what impact this has on the overall scheme of things. The goal posts continue to shift and 'frustration' keeps being redefined on quite a regular basis. In the meanwhile Paige is using the opportunity to practice standing, climbing the stairs and holding on to the furniture to walk around. I think that she knows the next round will be rough, so she's making full use of her time with no Chemo......

So again we continue to wait and see....

June 2nd - Still no go :-(

We took Paige down to Piam Brown again today, however her neutrophils are still too low at 0.4, so she could not have any chemotherapy. Her consultant Mary Morgan, has looked at her blood film and confirmed that she could not see any abnormal cells. The new plan is that we go to the hospital again on Monday and if her count is above 0.5, (the requirement is normally 0.75) they'll start her chemo. Her CSF (cerebral spinal fluid) results were negative for a 5th week in a row so we are super pleased about that!

So we carry on waiting, since there isn't anything else that we can do and hope that's Paige's neutrophils picks up so that she can crack on with her treatment. In the meanwhile she is still very happy and getting stronger every day. She even climbed our entire flight of stairs yesterday and seemed most pleased with herself :-)