26 September 2012

Lumbar Puncture today

Life seems to be going by so quickly now, it's been two weeks since the last update....

Paige continues to grow and develop very well, she's now up to 11.8kgs and has maintained a neutrophil count of 1.2. She dipped last week from 3.5 to 1.9 so the decision was taken to keep her on 25% of her dose of oral chemotherapy mercaptupurine and follow up bloods were done yesterday. Given that she has held her own over 1.0, her dosage has now been increased to 20mg which is 50% of the required dosage.

Testament to how well she is doing is that she never once complained today even though she was required to fast till she was taken in at about 10.45am for her lumbar puncture, she is no longer the youngest or the sickest so that she now has to take her place in the queque and is no longer given priority... tough call. There used to be an easily visible method to the order but now it all seems unclear. I guess it's a good thing that she is now well enough to take her place in the queque.......look on the bright side right? In fact after her LP she slept for at least 45mins and was smiling when the nurse brought her in to us in the parents room. She was ravenous though! So it all went without a hitch today. Dr Morgan though is still not convinced that we have gotten rid of the bacteria in her line and suggested that the next time that there is a problem that she would be minded to remove the Central Line.

We have continued to do fun things and Paige still adores her baby, here she is taking her to Marwells

baking bread with daddy, in the new kitchen

trying out her new scooter...she was scooting in the kitchen on Sunday and I said to her "Paige pls don't scoot in the house. Her response "don't worry mummy I know what I'm doing"

and lastly decorating cookies on Sunday with Samuel, she was so busy that she refused to look up at the camera

She does get into a lot of mischief though. Samuel continues to really enjoy his new school and has started both Rugby and football, which he absolutely loves!

In terms of Paige's treatment her blood will be tested again on Monday and a decision taken as to whether her dose or oral chemo should be increased or held at 50%. Her next round of chemo and steroids is due on October 8th.

Good night to all.

10 September 2012

We have more Neutrophils!

If I do say so myself, Paige is looking really good, and she has so much hair and beautiful skin.

We decided to take advantage of the recent spike in neutrophils and take the kids to Marwell's Zoo. Since seeing Joanne with baby Ciar, Paige is now even more fascinated with babies. She now takes her dolly in her own play buggy everywhere! Unfortunately we took both baby and buggy to the zoo on Saturday. Paige insisted that she had to push along the buggy at her own rate and direction. There was simply no negotiating with her. Of course it all ended in tears with her screaming and rolling around in the grass while all the other families stared at us. Clearly the terrible twos are in full gear! What it also means though is that she must be feeling fantastic. She hasn't had oral chemo for about 6 weeks and neutrophils for about 4 months! In spite of her tantrums though, Paige did manage to pick up dolly, climb onto her own buggy, and hold dolly in the air over the wall, so that dolly could see the penguins :-)

On Sunday we braved it again and it was much more successful, the kids had a fabulous time and Russell and I were able to relax and enjoy the day as well. The best part of the day for both Samuel and Paige were rolling down the hill in the play area!

Today Paige had her appointments with the optician and orthoptist, and I am pleased to report that her eyes are working well for her age and she does not require glasses :-). Even better news is that her neutrophils are now up to 3.4 and Dr Morgan has given the go ahead for her to resume oral chemotherapy, but at 1/4 of her regular dosage initially and then review her blood count again in a week's time. The general feeling is that Paige may only need half of the required dosage for the duration of her maintenance. She also had her vincristine today and started her five day course of Dexamethazone.

Tonight we also tested her with lactose free dairy and so far so good.....In other news big brother Samuel has started his 'big' school last week Thursday at West Hill Park, and by today didn't want or need us to stay with him, when I picked him on after his first day he said "Mummy I love it here, I want to come here every day!" by Friday afternoon we were heading over to the playing field rather than the car. So it's safe to say that he has settled in quite nicely.

All in all things are looking up....finally but as usual things can change very quickly so we live and enjoy the good moments as they present themselves.

5 September 2012

Big girl with neutrophils

Paige has grown up so much in the last couple of weeks, she tells me what to do such as "you stay right there mummy" and essentially orders us all around.....She's also got so much hair that we need a brush :-)

Also finally for the first time since June she has neutrophils of 1.3, what a relief, she's been neutropenic for such a long time that she probably feels fantastic. We've also reintroduced some lacofree cheese yesterday and today and so far so good, she seems to be tolerating it well. We've also changed her feeding routine so that she had an overnight milk every other night. This other that giving us a good night's sleep on alternate nights, also stimulates her appetite if she misses a feed. She is maintaining her weight at 11.4kgs and we're hoping that it will increase even more with the re introduction of dairy (but not lactose). The feeding tube will probably stay in until the end of her treatment as a back up for when she becomes ill or her eating is disturbed for any reason. Both Russell and I have made our peace with this and most of all Paige seems undisturbed by having the tube in.

Her four week cycle rolls around again next week with a shot of vinctsitine and 5 days of the Demon Dex...stay tuned

August 2012...

So many things happened in August that I never had a chance to update the blog :-).

Samuel 'graduated' from his pre school Buttercups on August 1st, he is such a lucky boy that his mama and cousin Darien were both able to attend, along with Russell, Paige and I :-)

On August 3rd - Samuel and Paige were christened at the St Peter's church by vicar Susan Allman, it was a very special day for all of us. We were joined by family and close friends at a bespoke ceremony, vicar Susan did a very apt sermon and the day's events were captured by our photographer of choice Celine. This is one of my favorite pics with the kids taking the light into the world. Both Paige and Samuel looked so beautiful......

On August 10th Paige attended her fist taster ballet class, which I think was a bit overwhelming for her but she did some minor bits. She'll start the autumn term on September 10th. I figured this would be slightly easier to cope with than swimming! I am determined that she is able to have at least one activity that doesn't require any medical staff.

On August 11th we said goodbye to grandma and Darien who spent an amazing five weeks with us, the kids certainly enjoyed having then around, and it was wonderful to have so many extra pairs of hands, not to mention all the quality time that we all spent together....we'll miss them terribly :-(

On August 12th Uncle Richard, who is also Paige's god father arrived to spend the next three weeks with us. Paige was treated to her first afternoon tea at Standstead house and Richard took some fantastic photos of us. This was during a week of the demon dexamethazone, which is clearly not as dreaded as it used to be. Paige loved being able to run on the grass freely, something that she really hasn't been allowed to do either because it's been too cold or I'd been too afraid to let her run wild for fear of picking up any unhealthy bacteria!

Her neutrophils by this stage had fallen to 0.3 so that chemo has ceased and we were due our holiday .......

On August 20th we set off on our journey firstly to visit Russell's Uncle George in Shrewsbury. Paige had been signed off by the consultants and we had a hospital within 20 minutes of each stop that had alreday been notified (by our specialist nurse Wilf) that Paige would be in the area. As we were due to set off she was a bit warm but never got hot, (I sat in the back seat and took her temp every 45 mins!). The kids loved spending time with George and June at their lovely home. It's always great to see how quickly the kids warm up to family, even if they are meeting them for the first time.....George is very unique individual.

We were enjoying the visit so much that we didn't set off for the Lake District till 7 pm, we got there at 10ish and both kids were still wide awake :-) We spent four days there and by Day 4 Paige had developed an ulcer on her tongue... and we took her to be checked out at the Lancaster hospital....lets just say that given the choice I will NEVER take her to that hospital again!! Anyway the good news was that she was fine, but her neutrophils has fallen even further to 0.2, but again we were advised that she was clinically well and we could continue on our journey to Scotland to visit Joanne and her new baby boy Ciar.

Sam and I took a train to Glasgow, while Russell, Richard and Paige drove. Her ulcer kept getting worse and you could see that she was uncomfortable when the Difflan spray wore off. It didn't stop her from enjoying being with her cousins though! Paige was completely smitten by Ciar, she held him and would stroke his cheek saying "don't cry little one". Both Joanne and indeed Ciar were very patient with Paige...

Unfortunately by Sunday morning Paige had a temp of 37.6C under her arm and 38.2C in her ear, we made the call to the Royal Hospital for Children and headed down, knowing that we would be there for the next couple of days. By the time we got there she was 38.9C and bloods were being done, along with anti biotics, paracetamol and a room was already assigned. We spent the next 5 days there on the "Scheillion Ward" a specialist hematology centre for children. Of all the stops for her to be ill, this was absolutely the best place. Paige was EXTREMELY well looked after by a team of doctors and nurses that even I couldn't find a single fault with! They were very good at what they did, along with being very thorough, and sensitive to Paige's needs. They also provided free accommodation for Russell and Samuel at a CLIC house a mere 2 mins walk away from the hospital. All of Paige's blood and line swab cultures were negative, and she did not present with any viral like symptoms so that her high temperatures of 39.6C which didn't respond very well to paracetamol remains a mystery. She was discharged last Saturday morning at 10.00am and we made a fast exit to Fareham. 8 hours and 5 pee breaks later we were safely home and she was absolutely fine, she even managed a 4 hour nap on the drive home :-).

So all in all a very eventful and busy month for us, with lots of firsts and spending time with our loved ones....