27 December 2011

Merry Christmas Everyone

Paige had a lovely Christmas. She enjoyed having special guests Uncle Kevin, Aunt Joanne, Uncle Peter and cousin Eilis. She's doing so well, it's sometime difficult to remember that she is ill. She now has a decent amount of hair and now that we have cracked the issue of her sick tummy she's in a much better place. She's seems to be lactose intolerant. Unfortunately it means that she now has a more difficult diet to maintain but it's amazing all the stuff we can get for which includes but is not limited to chocolate, soft and hard cheese, it doesn't taste so great but she doesn't seem to mind :-)

A pic of her on Christmas morning in her jammies, trying to give her new dolly a ride



Followed by a yummy lunch made by daddy which consisted of a chestnut/squash soup, turkey wellington, sprouts and roasted vegetables. Topped off with a Christmas cake made for us by the Bowen's with love.


and finally three little bunnies opening their stockings after dinner


Merry Christmas to all.....

12 December 2011

LP and Dex this week :-(

Today was Orlando's farewell, it was a beautiful, sad ceremony attended by many people, there was standing room only and I felt as if my eyes would explode with tears when Richard walked in carrying the little Thomas coffin all by himself. No parent should ever have to say goodbye to their child so early in life but Richard and Rhian are the strongest parents that I have ever seen and they made sure that Orlando had a send off that was very fitting for his short but blessed life. They are also ever so thoughtful and sent a balloon from the cremation for Paige, which she absolutely loved by the way.




Unfortunately Paige was unable to attend because she had Vincristine at QA today and has also started a five day course of the dreaded Dexamethazone (the steroid that makes her super grumpy and beside herself). On the good news side her neutrophils are still up at 1.6 and she looks really well.

Tomorrow we are at PB for her Lumbar Puncture.....

Busy Weekend

We had a pretty busy weekend. We are taking full advantage of Paige's neutrophils, so she attended Samuel's pre school Christmas Fayre om Saturday and did lots of fun stuff like decorating a cookie, catching the ducks and of course a visit to Santa! She seemed quite pleased to be out and about and see other children :-)

On Sunday we attended Piam Brown's Christmas Party and the kids had a fabulous time! They both had their faces painted and Paige ran up and down and all over the place free as a bird and probably felt more comfortable since other kids there didn't have any hair either.

then we had Buzz Light year


and both kids watching the magic show





 The Piam Brown team put on a really good show and the Paige also got a really nice gift. It's so good to see her running about and having so much fun.....

8 December 2011

We have growth!

Call the OBR! George and Dave could learn a lot from Paige's follicles. While the UK economy bumps along at 0.9%, her hair has shown growth of 500%! And that's after taking into account the one-off effects of the unseasonaly warm weather and Pippa Middleton's bottom. For the last two months the only hair she has had was a "mousetache" on the back of her head. The reason for the growth is that she is in a period of maintenance, which means limited chemotherapy. But also, the drugs that mainly cause her hair loss are Dauno- and Doxorubicin, and she has not had either of these for a while. At this rate, her hair will be longer than her mother's by January!

3 December 2011

Yesterday Celine, Joseph, Paige and I we were due to visit Orlando and his family and I was supposed to make a curry. Orlando has been battling with Cancer and unfortunately his tumors returned after several rounds of chemo, he was sent home just two weeks ago to be made comfortable. His very, strong and brave parents invited us to their home despite their very delicate circumstances, cautioning me to be prepared for the worst. When the phone rang at 7.30am yesterday morning I didn't get to it on time but as I feared the worst has happened and little Orlando has gone to sleep forever at 4.15am in his mother arms and his dad holding his hand.
Death affects us all in so many different ways, I couldn't update the blog yesterday because I was so upset yet Orlando's mum apologised to me for cancelling lunch at such short notice and his dad asked me how Paige was doing :-). As a friend of mine said to me when people ask 'how do you do it' the response is 'you just have to get on with it, don't you cause you haven't got a choice' Orlando has a younger brother who turned 3 last week Saturday.

So we started the day with a messy breakfast and little Miss Paige refused to let me feed her, so the kitchen was pretty much covered in rice crispies



Celine and Joseph then joined us for a curry, I believe that it was Joseph's first curry and he really didn't seem to mind using a pink bib and plate...


then the kids did some painting and made a beautiful mess for us to clear up afterwards :-)



so a difficult day was made more bearable because it was spent with friends, where we found comfort in each other and our beautiful, brave children who are storming through their respective treatments and giving us the much needed strength to cope with every new day.

29 November 2011

Lots of Neutrophils

Apologies for the lack of entries, life has been pretty busy...but in a good way.

Paige looks fabulous, is eating and drinking well and getting into all sorts of trouble!! Her hair has even started to grow again :-) Evidence of all of this is her neutrophils which is at 1.6 as of yesterday, she hasn't had such a good count for a long time so we are all quite pleased. Wilf, Paige's oncology nurse was also quite pleased with her results and said that her bone marrow is working pretty hard.

Paige's latest trysts are moving around the kitchen stool to get 'stuff' from the kitchen counter which includes plates, spoons and snacks. She also enjoys throwing items in the toilet bowl and retrieving it again, and we have four of then for her to choose from....of course this doesn't bode well given all the hard work that goes into keeping her and the house super clean and germ free. So we try to keep busy by doing fun things like painting,



writing her letter to Santa



We took her to Paulton's Park's winter wonderland last Sunday and she really enjoyed the rides but didn't want to sit on santa's lap. Sam on the other hand sat on his lap and listed all the items that he wanted for Christmas. This is the helicopter ride in Peppa Pig's world



Paige hopefully will have a quiet week this week, her next lumbar puncture is scheduled for Dec 13th, so I'll update the blog weekly now unless there something to report :-)

18 November 2011

Day 4 - Dexamethazone and the value of a good curry

The full effects of the dex is visible now and madame was miserable all day long and to make matters worse she refused to sleep as well, so by 4.00pm I had an over tired, frustrated, little girl who seemed to be constipated AND have a toothache. So I made curry chicken for dinner and it worked a treat, she loves chicken so had at least two pieces of meat. Oh and another thing you can take the girl out of Trinidad but you can't take the Trini out of the girl! Despite me cutting the meat off the bone for her she insists on eating the meat straight off the chicken leg! she doesn't particularly like boneless breast either. Anyway after dinner her mood lifted then she did the biggest poo ever which landed her in the bath and then I had a completely different child.

Paige continues to absolutely amaze and astound me, I needed to change her dressing and griploc because it was peeling off and her line got soaked during the impromptu shower. So I sat her on the bed in her dressing gown and she just sat there and held up her arm for me to first peel off the old dressing, dry the area, then curl and replace the dressing - this took a good couple of minutes and she just sat there quietly holding up her arm ....I've watched other kids scream on the ward when having a dressing changed and Sam yelled bloody murder just this week when I took a bit of gauze off his arm. Yet here is my little girl whose skin is now pale and red from having a dressing removed and replaced every 5-7 days for the last seven months, sitting and also holding her arm up so that I can clean the adhesive off and put on a smooth dressing. To top it off she obviously felt that I was taking too long so she peeled off the backing and put the griploc on herself. A griploc is an expensive plaster that has velcro on the top so that it helps to keep her line in place.
Tomorrow is the last day of dex for this month, unfortunately it will be repeated every month until her treatment is finished sometime in July 2013, so we all need to make our peace with Dex!

16 November 2011

Day 2 - Dexamethazone

Paige's LP went well on Tuesday, however literally 5 minutes after coming out of the room she woke up and was completely miserable, not surprising since the anesthetic would not have had a chance to wear off! Later in the day we spent some time with Orlando and his parents, his outlook has not improved at all and he is in alot of pain, his parents though tormented by his news and the tough decisions that have to be made still managed to be positive and were quite happy for Paige and I to spend time with them and provide a much needed distraction. My heart goes out to these very brave people and pray that little Orlando's pain goes away......


In the meanwhile I have to do the impossible task of keeping Paige happy, she is already totally miserable and spent most if her waking hours crying. The steroid is meant to increase her appetite instead it has done quite the opposite and upset her so much that she's not interested in food, but at least she is drinking loads of water. I've been holding her so much today that my arms feel like they'll fall off. Another side effect of this drug is aggression and I've certainly seen some of that today, if Paige doesn't want something, she will literally knock away with a backhand swing, this included but was not limited to her cereal at breakfast and soup at lunchtime. She will only eat plain food such as pasta with butter and cheese and refuse any orange food. She keeps a close eye on the color of what goes on her spoon and will knock away anything that's not white or meat!

I've been told that even children with cancer have to be disciplined, lest we end up with a spoilt monster who is accustomed to having her own way all the time at the end of treatment, but how am I supposed to do that in the wake of all the bad news around us? We have been advised to be social with the parents of other kids but not to get too embroiled in their lives but that seems difficult if we are all going on a similar journey and we do need support from each other just to keep going and to stay positive.
So I will gather all my positive energy and hope that it transfers to Paige over the next 3 days of dex, so that we can all make it through the day tomorrow and the two days after that because today we have to be thankful that Paige's treatment is working and she is otherwise healthy and we do not have any difficult decisions to make.
For our friends and family who read our blog please offer another prayer for little Orlando so that his pain is lifted and his parents are given the courage to do right by him, whatever that may be.

14 November 2011

Neutrophils of 1.0 Yay!

Paige my charming daughter had her Chemo today at the QA, all very uneventful and Dr Millard suggested that she may not be able to start her oral chemo today if her neutrophils were below 1.0, they were 0.3 on Thursday last week. I can't believe that she's recovered so quickly...hooray, this also means that she will not require a transfusion and has made it through yet another intensive block and is there is definite activity in her bone marrow..well done Paige!

13 November 2011

Interim Maintenance II begins

The last couple of days have become a bit of an eye opener for Madame Paige, she's definitely strong willed as we have seen with how she handles her treatment., She knows exactly what she wants and it's her way or the highway! She will throw herself on the ground and scream if she can't have what she wants and this includes Sam's toys that he is currently playing with. She shouts quite loudly and can articulate exactly what she wants even if she can't form the words and she's also quite sneaky she'll sometime wait till Sam isn't looking, steal his toy and run away and hide with it!
She's been eating and drinking very well in the last couple of days and looks really healthy, except her hair of course because she is now completely bald, even the stubborn strands that didn't fall of last time have now gone, but she's lucky that she has a fabulously shaped head.
Tomorrow interim maintenance begins with Vincristine at QA, which is a 'straight' through in her line. This is the Chemo that affects her tendons and may cause her to walk on her tip toes. On Tuesday she'll have a lumbar puncture at Piam Brown. This week she will also have Dexamethazone, the steroid which makes her absolutely ravenous, very, very grumpy and miserable with interrupted sleep patterns. She'll also start Mercatupurine an oral chemo which is given daily by me. So this week will be rough for both Paige, and I don't expect to have any energy left at the end of the day for an update. So here's to hoping all goes well and that I can keep Paige entertained during the week. More than willing to entertain any suggestions for distraction tactics :-)

10 November 2011

Eating Again

Paige is finally eating again, but oh what a mess!!! Tuesday she decided to wipe the table top with the soft cheese side of her sandwich - of course.
Yesterday and today she ate breakfast and yoghurts - what is it about your child eating that makes you feel so good?

Today she's enjoying her milk (quite unusual for her) and of course had two helpings of chicken tonight. I think that she may be either having a growth spurt or really enjoying not having any chemo this week. She's also quite a rough and tumble girl, today she ran after Sam yelling 'back, back' when he took a ball from her. She then tackled him from the back knocking him over and trying to bite him on the back, all the while I am in a controlled state of panic because of her line. I guess this is all normal for kids their age, but no so much for us. Later in the morning I decided to venture out for the first time with both kids in tow, of course Sam motivated by the fact that we were going to get a water bottle with his name on it, sat down quite nicely and put Paige's shoes on for her. She of course took it off immediately and he had to put them on again.
Busy days ahead with Paige's new found inquisitive, determined and stubborn self. She is relentless and uses all her skills to get things that are out of her reach. I'm also really looking forward to some new hair again!
Thankfully she's now peacefully asleep and cuddled with her big brother....

6 November 2011

Feeling a bit crappy

Paige had her last dose of cytarabine on Friday and has now almost completely lost her appetite. She's having maybe one meal per day and will snack on raisins or grapes, at least she's drinking water, juice and some milk. She is starting to look quite skinny though :-( She was also sick a couple of times on the weekend which is quite unusual for her. I guess this is to be expected after two weeks on continuous chemo on an already low neutrophil count. She also has a snotty nose and just doesn't seem herself. A quick call to the CAU (children's assessment unit) and a chat with one of the Registrar's made me feel more comfortable, he recons that she is just feeling rough post her chemo, but of course if I am worried or she is unwell we have open access and can take her there in an instant.
Didn't do much as usual this weekend given that her neutrophils may be naught or very close to that, but we did have a visit from Kathy who always manages to cheer us all up. Also I managed to go out to dinner with the girls for a pre-birthday celebration, complete with some bubbly, a beautiful cake courtesy Kathy and a boogie at the disco, (this combination of words shows both my age and where I live) they still call it a 'disco' and call dancing a 'boogie'!
Anyway back to my daughter. This is today's pic a simple box to cheer her up ! Every day we are reminded of how lucky we are that she is still, in the grand scheme of things, doing so well, there are so many others coping with a similar illness having a much more difficult journey. Paige is such a sweet, little girl and she makes our lives so rich and full of love everyday, a simple cuddle or kiss from her gives us the fuel to keep going.


Hopefully tonight will not involve a trip to the QA and Paige can enjoy her week off from Chemo until maintenance begins on Monday 15th. Here's looking forward to a quiet week for all of us.

3 November 2011

We love you Uncle Kevin

The ebbs and flows of Paige's appetite has no rhyme or reason. I guess she eats when she's hungry and won't when she's not! As I expected though her appetite is decreasing with each dose of Cytarabine. She's becoming quite a mischievous little one, she was missing for about 15mins yesterday and when I found her she was lying on the floor in the study with her finger in my lip balm! Of course half of it was missing and all over the carpet and her face. Her latest fad is wanting to write on everything especially Sam's leapfrog pad, so there are never ending fights between Sam and Paige.
Kevin has surgery today at 2.00pm Trinidad time, so we're sending him all our love and good wishes because we can't be there with him :-(
When we called today, Sam says to him "Uncle Kevin, what's wrong? I am so worried about you" out of the mouths of babes...........
Last dose of Cytarabine tomorrow then Paige's get a week off from all medicines.. hooray!!!

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

Thursday

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 :-)

Friday

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!

25 September 2011

Sunday

Early entry today....

3 weeks on and this block of Chemo has not let me down in terms of how challenging I expected it to be. Of course everything is more complicated by the fact that Paige has an infection and requires daily IV antibiotics, so we've now been to the hospital everyday since Tuesday last week and we are due again tomorrow. Paige is still completely distressed and not herself at all, I can now see the teeth poking through her gum, so hopefully the worst of it is over. I've now been taught how to draw up and administer her IV anti-biotics so hopefully next time if she's well we'll have less trips to the hospital.
5 months on and her treatment is really starting to take its toll on all of us. I'm beginning to both feel and see the signs of both physical and emotional wear and tear on the entire family. Paige keeps trekking on and so do we....
This is her week off to recover and if her neutrophils are above 0.75 by this friday she will begin her next round of Chemo in this block next week with a lumbar puncture, followed by Cyclophospamide and four consecutive days of Cytarabine, as well as Mercaptupurine.

22 September 2011

Paige is not a happy girl

Poor heart, Paige is obviously feeling ill, it could be becauset she just had her third round of chemo, or that she's coming down with something, has a nasty line infection or maybe she's teething. Whatever it is, she is not a happy camper at all. She's also not eating despite the large dose of steroids that she's taking. She's spent most of her day crying and being severely unhappy, haven't seen her like this for awhile.
In addition to a rough day when the community nurse arrived to give her her anti-biotocs she expected that I had the drugs which I didn't.The hospital never informed the community team that they needed to pick up the drugs, so the poor nurse had to leave the house collect the anti-biotics all the way at the hospital and then come back home to administer it, on top of this the pharmacy put the wrong concentration of heparin (200 units in 2ml instead of 50 units in 5ml - 10 times stronger!!!) this is an anti clogging agent that is administered after Paige's central line had been used. Good job the nurse knew what she was doing!!!! I certainly won't be leaving the hospital without her drugs or prescription again. I guess they figured that we don't have enough shit to worry about so they'd like to give us some more.
We're off to see the consultant tomorrow and hopefully her culture results are back as well and we'll have a plan for the next couple of days in terms of anti-biotics usage and hopefully what's ailing her.

21 September 2011

Overnight at Hotel QA

Yesterday Paige was due her third dose of vincristine and doxarubicin at QA at 1.30pm. When I changed her I noticed a very red, angry looking line site that appeared to be swollen as well. Of course I packed our bags and headed down to QA, I must admit I was quite worried having not seen her line like that before. One look at the line site and Wilf agreed that one of the consultants should have a look, luckily though she didn't have a temperature. Louise looked at her and prescribed anti-biotics, this time we're using a non-penicillin based drugs given Paige's previous rashes. They also decided that she was clinically very well and we should go ahead with her chemotherapy. This anti-biotic is needed every 12 hours for the first 24 hours and daily thereafter, so I was given the option to spend the night or go home. I opted to spend the night and be safe.
Mummy is still here so Sam is well looked after. Sam's childminder Laura, the gem that she is picked up Sam from pre-school on Tuesday and was also happy to drop and pick him up on Wednesday, so we were all sorted - Thank you Laura!
Paige got a mystery rash at 6.00pm that disappeared within 15 minutes, so additional bloods were done at 2.00am when her anti-biotics were due. She has not developed a fever and her C Reactive Protein is less than 5 so we were discharged after her anti-biotics at 2.00pm today. The results of her blood cultures will not be available for 48 hours, so she will continue to have daily anti-biotics until they're in, they're expecting that she'll need another blood transfusion soon so we're back at QA on Friday morning at 10.00am for a review.
Our stay at QA was uneventful this time round and the nurses and other staff assigned to us were very attentive, accommodating and very much on the ball with her meds and needs. We stayed at The Shipwrecked ward which is the post surgery ward rather that the Starfish ward where we usually stay, not sure if that made a difference? Now that Paige is on the move it was quite difficult to keep her both entertained and in her room but everyone on the ward helped to keep her smiling and happy.
Anyway we're back at home and Paige's line is looking good and she is fast asleep, poor heart she didn't have a good night last night and didn't get much sleep either. She's also on day 2 of dexamethazone which isn't going to help her mood :-(

18 September 2011

This week

Paige has had a decent couple of days she's eating alot better and seems quite fond of meat, any kind of meat pork, chicken, turkey, sausages and even prawns. She will only eat the meat though and leave everything else on her plate. She's absolutely not interested in milk anymore except in her cereal. She's walking really fast now and also learned how to have a tantrum, throwing herself on the ground and banging her head on the floor in the process. She still has the most beautiful smile and she's generally in good spirits.
This week on Tuesday she has her third and final dose of doxorubicin and vincristine at QA. This will be accompanied by 7 days of dexamethazone, the dreaded steroid which makes her miserable, causes insomnia and makes her very grumpy and hungry all day. This week may not be much fun :-( Then she has a week off to recover before starting her next lot of Chemo.

13 September 2011

Heavy Chemo Second Dose

Finally the week of Dex is now over, poor Paige had insomnia last night and didn't go to bed till 10.30pm, this is after being up at 6.00am, so a really long day for me. I think that the week of Dex has made us both weary and a bit worn down, I must admit I'm starting to feel the wear and tear of not having slept through the night for the last seven days and 5 months :-(.
Anyway, Paige continues to be in very good spirits flirting with her Nurse while he administered her  next round of Chemo which is infused over an hour. Chemo today is called Doxarubicin and is quite toxic for the first 24-48 hours. Tomorrow will require diligent doses of anti-sickness every four hours so that she isn't sick. We've already had a small 'domit' this afternoon. (A domit is Sam's name for being sick). She's moving around really fast now, almost running and she can walk around in her Wellies, clearly she has decided that this treatment is not going to slow her down. You go girl!!
Hopefully we'll have a quiet rest of the week, she had a small temperature this afternoon that went back down to normal by bedtime. No more treatments are scheduled this week. Next round is due again next Tuesday at QA.

11 September 2011

A sumptous lunch followed by an afternoon out

My darling Paige was very unhappy and particularly grumpy today, (day 6 of Dex). She ate reasonably well, and she's definitely her father's daughter. She absolutely enjoyed and demolished the delicious pork that her daddy cooked today. So despite her low neutrophils, we went to Victoria Park for the Piam Brown's children fun afternoon. Both kids had a fantastic time riding on the small train and then on to activities and tea in the function room. Paige spent most of the afternoon roaming the grounds and toddling around the room with her Aunt Rosemary who came over for lunch today. While Sam and I enjoyed the games. Of course Andrew and Russell stayed at home to watch formula1 and drink beer. So a good day was had by all and my two tired but happy kids are off to bed.
This entry however would be incomplete without a big well done! to my husband who made the most delicious lunch all by himself, I simply set the table.

Menu
 cream of butternut squash and coriander soup, with homemade herb bread
smoked pork loin with a mushroom risotto and roasted red peppers
rum souffle with home-made rum & raisin ice cream (heavy on the rum)

10 September 2011

Last Couple of Days

Thursday

On Thursday we headed down to QA for Paige's Peg Asp, which is chemotherapy delivered via a slow injection into the muscle in her thigh. Russell reckons that both Sam and Paige have inherited their grandma's meaty thighs, so that always holds them in good stead when they have to receive jabs. The nurses are always quite pleased with what they see :-). Of all her treatments though, this was by far the worst, the poor heart screamed the entire time turned bright red and broke into a sweat. Needless to say Wilf, her oncology nurse says that other kids have said that it's feels like concrete running down your legs and that Paige may not walk for about 24 hours. Ha! 10 minutes later she was walking about and trying to get to the general play area because there was a little boy playing there.....as always she never ceases to amaze us. She had a decent rest of the day, ate well and slept ok, as long as I was next to her. Her blood is on it's was down as is expected, her nuetrophils are a mere 0.2.

Friday
Paige is now walking around with her hands behind her back just like my father :-) It's so peculiar to see her doing it especially since he's been back in Trinidad since July. She's also learned how to nod 'yes' when asked if she wants more jelly or chocolate pudding. Her spirits were a bit better today but she's still pretty grumpy and clingy. My shoulders now ache from holding her so much while doing other things like cooking. I've got some highly developed arm muscles now ! She's seems to be getting steadier on her feet, then she falls over. The steroid also seems to have finally kicked in and she's eating a bit more and looking a bit better so the weight could be an additional reason for falling over.

Saturday
Paige didn't have a good day today at all. She started of well though had a really good breakfast. Then bam! she fell over sideways and got a nasty bump just behind her ear. Half hour later she bashed her face on the ottoman and bruise number 2. One hour later she managed to get a gash on her knee that no-one could explain. By then I took her upstairs for a nap. I set her on the changing  station and she threw her head back and manged to miss the pillow and hit the edge of the cot instead - by now someone might be calling child services! Anyway she refused lunch which is normal on weekends when she also has to have her preventative anti-biotic. Finally she fell asleep at 1.30pm and woke up creaming at 4.30 till about 5.30pm. She stayed grumpy and must have also had insomnia cause she didn't fall asleep till 9.00pm. (we were in bed at 7.30pm) So finally this day is over, but on the upside she weighs 10kgs in a nappy only on the bathroom scale - yay!

8 September 2011

Day 3

Paige had a much better than expected sleep last night, of course it helped that I left her in our bed rather than her cot. She had a slightly better day today, didn't throw up and had at least two good meals. I'm not sure if it's cause she's feeling better or because I was much more vigilant with the anti sickness. She's not needed it before so I always try not to over medicate her. She's not too pleased about having medication every 4 hours though. Worst of all I think that she really doesn't know what to do with herself with the high doses of the current steroid. Her oncology nurse Wilf said to me 'it messes with the kids physiologically', but what does it do to a 14 month old ?? Anyway just a couple more days. Tomorrow she has what's called Pegylated Asparaginase which is a chemotherapy drug that is administered via the muscle, it will be done at QA. Russell held her for her last two so I'm not looking forward to tomorrow at all, but I'm sure Paige will keep me calm. We'll need to stay for an hour after the drug is administered to ensure that there are no allergic reactions.
She's becoming a proper little girl now and throws tantrums if she can't get what she wants and this includes but is not limited to throwing herself on the ground and having a good cry tears and all, if I won't let her go outside.
Her big brother Sam continues to love his new school and came home with smiley faces for being 'a good listener' and 'doing good work'.
It was pretty amazing to watch as he walked in the door this afternoon, Paige toddled over straight to him and held her arms out for a big cuddle, they both just stood there in the doorway holding each other for a couple of seconds, the most beautiful sight in the world........

6 September 2011

Delayed Intensification - Day 2

Paige didn't have such a good day today, she's completely dis-interested in food and vomited twice today, which she rarely ever dose. Once all over me just as I finished dressing after my shower and then again later in the day. She is now extremely wobbly on her feet, but she's so clever that she's figured that out alreday so she walks near to something to hold on to! Poor heart she's already feeling horrible with the Dex and won't let me out of her sight! I picked up the keys to collect Sam from pre-school this afternoon and she headed for her shoes:-). She's also not happy taking her anti-sickness either which is due every 4 hours, so all in all not a great day for her and this will dictate the pattern for the week. I'm expecting her to wake up creaming anytime now so this will be a short entry.
Day 2 for Sam was smooth sailing, this time I left him at the door and he kissed me goodbye and said 'bye mom, have a lovely day' I could see him through the door telling his carer 'should I put my water bottle away in there' pointing at the crate where all of the water bottles are stored. Then when I picked him up this afternoon he had home-work!!!

First Days are her again

We got to PB at 10.30am all set for chemo, except the pharmacy had other ideas, Chemo didn't arrive till 12.30pm! In the meanwhile Paige kept herself busy walking around for all to see and made friends with the sisters of a recently diagnosed other little girl. The infusion took one hour and we were given the all clear to leave soon afterward, except for another trip to the pharmacy to collect Paige's Dexamthezone, a steriod that she will take over the next 7 days and be completely miserable but hopefully her appetite will increase. 
Paige seemed nonplussed by the fact that she had Chemo and seemed fine all afternoon, she is however a bit wobbly on her feet.
Sam settled in quite quickly at pre-school, he asked me to stay for '2 minutes' which turned into about 20. He's such a big boy!

4 September 2011

Delayed Intensification Began

Paige had her Lumbar Puncture and Bone Marrow ant PB last Friday, it was brought forward from this coming Tuesday due to training day to be held on Tuesday. So her Delayed Intensification officially began on Friday. I was quite apprehensive for her but as it turns out she was absolutely fine. She woke up about 1/2 hour after coming out, cried a little bit then drank some milk, ate a brioche and was off. I'm not sure that she realised that she had just had a general anesthetic because she was wobbling around the ward and causing quite a distraction. The doctors and nurses were all amazed at how well she looked and the fact that she could toddle around! So much for me being worried for her.
She had a good weekend, walking around a bit more steady now, while using her hands for balance. Based on her blood count done on Friday, she's been cleared for Chemo. She starts tomorrow with Doxorubicin and Vincristine at Piam Brown. 'Dox' as they call it is the 'big gun' and she will have three successive doses, one per week. This week she will also have Peg Asparaginase which is intra-muscular and will be done at QA on Thursday. So with a heavy heart we say goodbye to interim maintenance and start this third but second to last block of intensive Chemotherapy.
So tomorrow is a big day : Sam has his first day at Pre-School and he is so excited, while Paige starts another block of intensive drugs where all her new beautiful hair will fall off again :-)...Good luck to both of my babies

30 August 2011

This Week

Paige will enjoy 4 Chemo free days this week - hooray! It was certainly easier this afternoon for all of us when she could have a leisurely dinner and pick whatever she wanted till it was time for her bath. Usually she has dinner, one hour later she is given her oral chemo, then we have to wait for another hour until she can have her bedtime milk. Apparently this particular Chemo is metabolized better on an empty stomach.
We head on down to QA tomorrow afternoon, to have a check up and bloods done.
Her Delayed Intensification 1 starts with a lumbar puncture and bone marrow this Friday. This will be her third block of intensive chemo and her doses will now be increased to the normal level, she was previously given 75% of the dosage because she was less than one year old.

26 August 2011

Quiet Week - Big News "I'm Walking"

Paige had a relatively quiet week, it started with a visit from the community nurse on Monday. Her neutrophils are down to 0.7, so that means she will primarily be housebound again. Paige has been cruising around the furniture for a while now and on Tuesday she simply got up and walked across the living room floor to meet me! Of course she's wobbling around like a dunk child but we are so thrilled that she is walking despite her chemo which affects her tendons.
She is also particularly pleased with herself and has this knowing smile every time she walks around. Of course now that she can walk, she no longer wants to crawl up the stairs but rather hold on to the rail and walk up as well. Her appetite unfortunately is waning again and she has lost some weight she was down to 9.75kg last week and has probably lost some more weight now. She fed herself today, another milestone for her, she obviously knows that an intensive block starts next week so she trying to get alot achieved this week. She continues to be her very sweet, stubborn, independent self. She's a girl who definitely knows what she wants and that includes a hand bag, hat and coat before she goes out. She's also learn't how to throw a really good tantrum if she can't get what she wants or help pick up the pieces if she's done something wrong. We thought we had ours hands full with Sam, clearly we've not seen it all :-) Paige also blows her nose and shuts the bedroom door when she is ready for a nap!



First steps


21 August 2011

A proper day out!

Paige's neutrophils were quite good at 1.8 on Monday last, after having a week of steroids. So Russell took two days off so that we could salvage some of the summer and take the kids out. We went to Paultons Park yesterday, but it seemed that everyone else had the same idea! There was traffic from the motor way, all the way in, then a long queue for the tickets and again for the 'priority pass.' If you're disabled or have a serious illness you can request a pass to skip the long lines. Thank god we did that or we would have done maybe two rides in 5 hours! Paige and Samuel had a fabulous time. It started with a helicopter ride where Paige sat on her own, of course all four of us were on it.
It felt so good to do normal things and for a day (even though there was a reminder at each ride). We were able to cast our illness aside and enjoy the sunshine and laughter of the children as we rode on the helicopter, car, train and then a boat, all in 'Peppa Pig's World". All the rides were done together as a family. Paige seemed so happy and Samuel was absolutely beaming at each new ride. Samuel and I did some extra rides on our own while Paige and Russell rested for a while.
Paige is standing on her own much more now and taking a couple of steps, I am hoping that she starts walking before her next block of intensive therapy which is scheduled to start on Sept 2nd with a lumbar puncture. Not looking forward to the next block but needs must.... 

14 August 2011

Dex is completed

The last 5 days have been absolutely miserable for Paige. The steroid, dexamethazone makes her extremely grumpy and just plain old miserable. She cries for at least 45mins, 5-6 hours after she's had the drug and is absolutely inconsolable. This includes a stint at night where she wakes up screaming and continues for about 30-45 minutes or so before she gabbles a small bottles of milk and is off to sleep, only in our bed of course.  Poor Russell has been evicted !
Paige got beautiful presents from her Uncle Richard this weekend, a personalised blanket and plate, along with a matching stuffed giraffe and new travel bag - thank you Richard :-)
She also rode on the Watercress line steam trains today and she had a fantastic time, she is always so happy to be out and about, especially if it's not to the hospital!
This week should be a better week for her , it starts off with a trip to the QA tomorrow for a check up and then she continues on her mercaptopurine (oral chemo) this week.

9 August 2011

Lumbar Puncture Today

Paige had her Vincristine yesterday, followed by a lumbar puncture today. All went smoothly and she slept for 45 minutes after her puncture. This was an absolute godsend because she is required to lie still and flat for at least one hour after the lumbar puncture which is always an impossible task with Paige. She was also in good spirits immediately after, even though she was a bit groggy, which is understandable after a general anesthetic.
She started her dexamethazone today, a steroid which hopefully will increase her appetite but also makes her extremely grumpy and demanding ! So we'll be in for a rough 5 days!
She finally fell asleep after an hour she seems pretty uncomfortable tonight, hopefully she'll get some rest tonight. She will continue to enjoy her interim maintenance now until September 2nd when her next lumbar puncture is due.

6 August 2011

My Big Girl

Quiet day today. Paige has started to experiment more with her food and still isn't eating much but at least she's trying. She's even more mobile now trying to climb onto everything which includes the window sills!
She still continues to amaze us with her bravery and co-operation. Every afternoon I mix her Chemo and she comes over and sucks down the contents - truly amazing.
Then tonight after her bath I decided to change her dressing all by myself, to my amazement and surprise as I started to peel off the dressing my "Big Girl" raised her arm and kept it raised, all the while keeping still - we are truly blessed to have such an awesome daughter :-).
Looking forward to the weekend and enjoying some time out doing fun stuff while her neutrophils are still up, I hope? haven't had a blood test since Monday.
Next week won't be so great for her as it starts off with Vincristine on Monday at QA, followed by a Lumbar Puncture at PB on Tuesday :-(

3 August 2011

Outing to 'Holly Hill'

Paige donned her shorts, sun hat and shades and we were off to Holly Hill, a woodland forest. She seemed quite pleased to be out and about. She saw the ducks, we strolled around the forest with Mama, Sam, Rachel, Ollie and Isla. She was so thrilled to be out that she never slept a wink, even though it was way past her nap time. It was quite difficult to convince her that she needed to stay in the buggy but eventually she gave up and just clutched her 'Taggy' she didn't even fuss when I reclined her. At the end of the outing Sam said "mummy that was a great adventure, thank you." What a superstar :-).

Her appetite still isn't great but we continue to try new options, she seems to like bagels and of course had some of her finger paints for her mid morning snack! Comments for food ideas welcome!

2 August 2011

Glad to be home

Ok, it's past 11.30pm so safe to write. Paige had a good day today, playing with her toys and giving Sam cuddles and kisses, quite unusual for her. Unfortunately her appetite is not so great with only one decent meal today. She refused lunch and dinner but perked up for the chocolate and ice cream after dinner! Her daddy came home early and put her to bed tonight giving me some much welcomed time off.
Hopefully the rest of her interim maintenance will be uneventful....Tomorrow is our 'outing day' will keep you posted on if it comes to pass :-)

1 August 2011

We're home :-)

After 3 1/2 days at the QA we are at home! This has been our longest stint at the hospital since Paige has been discharged from Piam Brown. Her cultures were all negative for a bacterial infection, so it seems that she had a viral infection, but given her compromised immune system, the protocol must be strictly followed and IV anti-biotics had to be given at the onset. As Dr Jo Walker her consultant for the weekend said "Protocol saves lives." She is a firm believer that once presented with symptoms the protocol must be followed even if the risk is over-medication, it's a much smaller risk than leaving any nasties untreated.
I must say that the staff at the QA went out of their way to make our stay as comfortable as possible which even included giving me a hospital bed rather that a cot bed, so that I could sleep next to Paige with her cot bar down, and therefore creating a sort of 'double bed'. They even swapped rooms so that we could be next to Joseph, and his mum Celine. Celine his mum loves taking photos and there some beautiful shots of the kids together - have a look on Joseph's blog, there's a link on the right hand side of Paige's blog. Her care, which I am pleased to report was also faultless. Our night time nurse was particularly sensitive to Paige's needs and even managed to administer both of her anti-biotocs which included a 1/2 hour infusion and replacement of Paige's drip without waking her up! An absolute miracle - Thank you Fiona
Her bloods are recovering and she is no longer neutropenic (1.4 today) which means that we can continue to do some normal things this week. Although I am a bit nervous since last week Wednesday and Thursday were the first days that we went out and she ended up in the hospital on Thursday night :-(.
Anyway she is thrilled to be home and so am I! We were also give the green light to start her chemotherapy again.

30 July 2011

Fever

On Thursday night Paige woke up at 2300 crying..and with a temperature of over 39C. In a healthy child a fever is not necessarily something to worry about (Sam used to have high fevers or 40 and up), simply a sign that the body is fighting infection. Unfortunately for Paige, her first line of defense against infections has been severely depleted by the treatment (actually, her neutrophils were 0.9 on Monday, so we was not technically neutropenic, but the average person has a neutrophil count of 4). 

So it was off to the hospital. The procedure is to take blood, send it off to the lab and immediately start a treatment of broad spectrum antibiotics (in this case Gentamicin and Tazocin). It takes up to 48 hours to determine exactly what the infection is, but in the meantime the drugs do the job of the neutrophils.


We have been quite lucky to far: more than three months after Paige was diagnosed and this is the first time she has had a fever. Since the 28th of April, and apart from treatments, tests or lumbar punctures, she has only been in hospital twice, both times for suspected problems with her central line. And she was out within a day.


No such luck this time. The consultant has indicated that Paige could be in the hospital for 3-5 days, although in between doses of antibiotic she and Lisa may be able to come home and visit (the hospital is only 15 minutes away).


In the meantime Paige does not look unwell at all, thankfully. When I went to visit them this evening she was walking around the ward with the help of a walker, keeping the staff entertained! She is not eating very well, and getting milk in her is a struggle, as usual, but she is still smiling.

26 July 2011

Green light for Chemo

Paige had quite a busy day yesterday, she woke up at 5.30am, had some milk and grabbed some more shut eye. The community nurse arrived bright and early at 8.15am to take bloods. Then the Health Visitor, Lorraine arrived at 11.00am for Paige's 1 year health check. She's doing alright on most fronts with the exception of speech which is a bit behind. She should be able to say at least 3 clear words by now and babble to herself. She used to say Papa but has now stopped since her grandpa left, and she definitely doesn't babble all day long! She'll be reassessed again at 18 months and a plan will be made then in terms of whether she needs a speech therapist or not.

By noon Wilf the oncology nurse at QA, rang with good news, Paige's neutrophils are up to 0.9 and she can start chemo again, so good news that we can crack on again, but not so good for Paige who was really enjoying her break.
In terms of Paige's moods and behavior she is relentless, when she wants something she goes for it regardless of where it is or what's in front of her, she'll clear the way and just go for it! So nothing is safe books, photos, pretty much anything that she can squeeze into her mouth and she even started biting into Sam's toys! Of course he's not too pleased. She's also started using her ride along toy and the rocking horse, all good signs that her confidence and motor skills are improving.
So oral Chemo for the next couple of weeks and no scheduled visits to the hospital till August 8th - she even gets a break from the doctors and hospitals :-)

23 July 2011

Treatment Lull

My beautiful baby girl is now an absolute monkey! she climbs everywhere and on everything, she has also learned how to climb back down and this includes the stairs! Her mood has definitely improved, she's eating better or rather like a normal 13 month old and plays really well on her own. She also incites mischief when Sam is around which is quite often.
In terms of treatment there's a definite lull and it almost feels like Paige has dropped off the priority list, after a couple of phone calls, I have now been visited by our POONS (Pediatric Oncology Nursing Specialist). I'm advised that it's not unusual for the blood recovery to be quite slow and a waiting period of up to 5-6 weeks can be tolerated before Chemo begins again. Of course this only had a marginal effect on reducing my anxiety and I'm not clear how it affects Paige. So bloods will be taken again on Monday at 8.15am and a decision taken. If her neutrophils are at the required 1.0 she'll start her oral Chemo next week.
I flushed Paige's line for the first time this week on Thursday, I was a bit nervous being caught off guard but I have now been signed off. The main reason for learning is that Paige's clamp has been found opened every day several times a day, but only for short periods. What happens is if her line remains un-clamped for long periods, blood can flow through and cause blockages, and/or possible infection. So it's quite important that the clamp stays closed. If found open and I'm not sure for how long it is required to be flushed through, the good news is that this event will no longer require a trip to the QA! .
Paige has been mostly house bound since she's been diagnosed due to her compromised immune system and poor Sam has also suffered because even though he is a healthy, active 3 year old. Is this fair to him? probably not so we've decided that he should have treats sometimes too and today was his first, we took him to the cinema for the first time to see Cars 2 in 3D and he really enjoyed it, he didn't even fuss much and we actually watched the whole movie, quite a treat for Russell and I as well to be out and at the cinema :-). Paige on the other hand was none the wiser as she fell asleep 15 minutes after we left and woke up about 20 minutes before we came home!
Tomorrow we'll do some finger painting ......

19 July 2011

Chemo delayed

Paige's mood has definitely picked up and she's in the mood for trying new things. She now prefers drinking with a straw including her formula which is fantastic because she's finally nearing her daily fluid requirement of 600mls. She's also managing two decent meals a day with a snack at lunchtime. Her blood count unfortunately is quite low, namely her neutrophils which is at 0.3, much too low to start her oral chemo this week. The main cause seems to be her runny nose which could knock her count down. So much for last minute shopping or taking her Papa out for a meal before he leaves bright and early tomorrow morning!
I still think she is amazing though, all through her grief and pain, she manages to smile and dance to any sound including the hum of Sam's electronic toothbrush when he brushes his teeth in the morning, but I think her favorite tunes are those on her Dora book that her Aunty Gail sent for her.
Sam on the other hand has a much improved behavior and must be the most polite child. I made him some pasta yesterday and put cherry tomatoes in it because he saw them on the counter and told me he really liked them. Anyway I said "Sam I put some tomatoes in your pasta" and his response was "that's very kind of you mummy, thank you" imagine my surprise :-).
I haven't been given the revised plan for her yet but I am expecting that more bloods will be taken later this week.

17 July 2011

Steriods now complete!

Paige continued to be grumpy for the last couple of days and this also included screaming for 45 minutes on Friday and Saturday at 11.30pm. She seemed so distressed on Friday night I was almost in tears as well wondering should I call QA? what will I say Paige is crying but doesn't have a temperature or redness around her line and I can't settle her? In the end I walked around the house with her gave her some toast, codine and a bottle and she eventually settled at 12.45ish.
She obviously feels like crap but can't tell me what she needs to make her feel better so when she cries at night I now automatically take her to our bed and hold her till she falls asleep, she no longer sleeps in her cot at night, she just has a wee nap from about 8/9 till 10/11 ish then it's time to cuddle with mummy for the night :-)
At least her course of steriods is now complete. Tomorrow she's due blood tests and if she is up to a neutrophil count of 1.0, she can start her oral chemo.
She's still not eating much but managed to try some of Papa Boyz' roti and curry duck today, yummy -). Kathy also spent the weekend with us and that kept Sam quite busy and entertained!

14 July 2011

Grumpy Paige

Dexamethazone (dex) is the steroid that Paige will now enjoy for 5 days, I was really looking forward to this because I remembered how well she ate the last time that she was taking it, but I must admit I forgot how grumpy it made her. Picture this she had Vincristine on Monday, this makes her jaw and tendons hurt, a  lumbar puncture and bone marrow biopsy on Tuesday, which makes her really sore, combined with dex which is know to make you feel completely out of sorts and grumpy, and an oncoming cold and you get one seriously GRUMPY baby!!

She must also have a sore throat because she's only interested in jelly and fromage frais, but she did manage to eat some of mummy's curried channa and potato today, her first real curry :-)
Also because she was in such a bad mood I was not able to flush her line today after I've been practicing for the last two weeks. As the oncology nurse Sharon said, 'Lisa we'll be setting you up to fail if you tried today' she also commented on how unsettled Paige was cause she hasn't seen her like this before.
Poor Paige, life just seems more and more unfair to her .....

13 July 2011

Interim Maintenance Begins

Paige enjoyed a brief, small but very special birthday party on Sunday which included her grand parents, Joanne, Eilis, Kathy and Joseph her only little buddy, he was diagnosed a couple days after her and they share a very special friendship. Pictures will be posted soon, but there are 2 shots on Joseph's blog as Celine took the photos! I lost my camera just in time for the party. 
Paige started her next phase of treatment on Monday with a IV shot of chemotherapy called Vincristine, this particular drug has know side effects of jaw pain and weak thighs, not very useful for someone who's learning how to walk and teething! This phase will last for 8 weeks and is meant to be a bit easier for all of us. It will also give Paige a chance to get ready for the next phase which will be quite intensive.
She had a lumbar puncture and Bone Marrow done yesterday and results are due tomorrow, we are expecting that she continues to have a clear bone marrow and spinal fluid - fingers crossed.
Her neutrophils are quite low at 0.3 so that her oral chemotherapy, Mecaptupurine will be delayed till next week. She will continue to enjoy another chemo free couple of days - yay, which I know she's just loving. She needs to have neutrophils of at least 1.0 to begin. Of course the consultants are not worried because she has started 5 days of her steroid Dexamethazone which will push her neutrophils up!
The next few days may be tricky though as I've now got a cold as well as Sam and Paige has a runny nose, Trying to stay away from her whilst in the same house is difficult if not impossible.
Strange though as Paige finally slept through the night on Monday for the first time since we've been discharged. Russell and I even enjoyed a 'Date Night" (on the insistence and encouragement of my parents) on Monday which included a quick dinner and a movie! it felt good to do something normal :-)
So onward we march into the next phase with my very brave, strong child who continues to astound us with her positive attitude and to this dreaded disease.......

9 July 2011

Aunty Joanne & Eilis are here

I think that Paige knew that Joanne and Eilis were due to arrive yesterday and she was soo excited that she woke up at 2.30am and decided that she should play till 5.15am! Not only did she play, but also managed to climb off the bed and head straight for my parents room, banging then pushing the door open all the while calling her papa :-).

Paige really hasn't had the opportunity to play with someone her age, she and Eilis played so calmly together (Sam was at the childminder) and she kept smiling at Eilis and you could see her thinking hmmm, she's walking around, maybe I should try that as well.

Joanne and Eilis are here for the weekend and we're planning for a small intimate birthday celebration for Paige tomorrow. Since Paige had had her transfusion this week, she has really got some more color and energy now and isn't falling over as much.

6 July 2011

Got Blood ?

The consultant and I tried really hard for Paige's blood to recover on their own and they rose slightly from last Thursday to Sunday, but started to fall again on Tuesday, so the decision was taken to transfuse her today. She received 150mls slowly infused over 3 hours. It was a pretty seamless. We arrived and they were ready for us, Paige played, ate her lunch and of course fell asleep when she has just 1/2 hour left of her infusion. She was bright, chipper and quite flushed after wards. She also wanted to visit her buddy Joseph who was also just admitted to QA. It was amazing to watch her caressing and smiling at this little boy who is 5 months younger than her.
Paige can now enjoy her week off until next week Monday when "Interim Maintenance" begins with Chemotherapy on Monday followed by a Lumbar Puncture on Tuesday. So I'll sign off till then unless anything major crops up.

3 July 2011

Fun on the trampoline

Madame had lots of fun this weekend despite having low hemoglobin and probably needing a transfusion by Monday. As you can see on the left she loved jumping on the trampoline, even though her foot never actually leaves the ground. We took her to the beach and she had a long ride on her bike and even went down near the surf but wasn't allowed to touch anything! By this afternoon I am convinced that she's definitely reached the 'monkey stage' climbing on everything including her brother's chair. Finally on my little superstar's way to bed tonight she stopped after climbing every two stairs to way goodbye and smile at her grandparents. She gets into all sorts of mischief now and it is always accompanied by the most beautiful smile :-).

2 July 2011

No Transfusion just yet

Paige had a lie in today and woke up at 6.00am, then fell asleep again and woke up at 9.45am. She is really tired now and is severely unhappy if I am more than 2 feet away from her. She had her final dose of Cytarabine today and screamed the entire time because we had to wake her up. I haven't seen her cry/cream like that since her first dressing was taken off and she was absolutely terrified, it broke my heart to watch her today and the nurses were pretty distressed too. But the silver lining in all of this, is that her illness hasn't broken her spirit. Even though she is visibly tired. Poor thing she's loosing her balance easily and isn't interested in climbing up the stairs anymore.
Anyway, after speaking with Dr Milard at QA she advised that we should hold off on Paige's transfusion until the sooner of me reporting that she is ill or unhappy or her hemoglobin falls below 6.0, she's currently 7.2.  So we'll take her down to QA on Sunday for a follow up full blood count and make a plan for next week based on that. She has her last dose of oral chemo, mercaptupurine on Monday, so if she can maintain her current blood levels till then she'll hopefully avoid a transfusion. As Dr Millard said 'we just shot her blood will some really big guns"

30 June 2011

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!

28 June 2011

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" .

27 June 2011

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.

23 June 2011

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.

22 June 2011

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