26 February 2013

Life's a Yo Yo - didn't you know?

The life of a family fighting cancer has so many ups and downs we are a virtual Yo Yo!

Paige had her first haircut at a beauty salon.

She also celebrated her first Valentines day with us as a family in our house rather than at the hospital, which included making special cards for everyone and pressies! We also spent a lovely weekend in Bath with Margaret and Asha, two of my classmates from high school, along their respective families that weekend. Samuel was quite amused that I was seeing my 'school friends'. Paige was her usual cheery self despite having been given a low neutrophils count of 0.4 on Monday Feb 11th. We knew that she had recovered though, a good indication was her ability to give up her day sleeps three days in a row! Of course Samuel was at home for half term so that certainly helped with her staying awake. That was a great 'UP' for us all being able to have a weekend that was away from home, hospital free and with friends. Quite a treat for me particularly.

Then we returned home on Sunday and she spiked a temp of 38C on Wednesday morning at 7.00am. By this time her neutrophils was back up to 1.6. So they observed her for many hours at the hospital, inserted a cannula, gave her some IV anti-biotics and sent her home to be managed. She now had neutrophils of 6! So for the first time since she has started treatment her bone marrow was working really hard to fight her infection. By midnight she spiked again to 38.6C and a quick call to the hospital confirmed that we could administer Calpol as needed and take her in to the hospital, if we were at all worried. Managing her at home was quite scary, without the safety net of being in the hospital. Of course being in the hospital so many times previously I was well trained and prepared. So of course kept a log and did 4 hourly observations, with hourly temp checks if she had a temp! Her fever eventually broke on Thursday late afternoon and she's been on the road to recovery since :-).

Then yesterday she had her 4 weekly cycle of chemo. After two tries her cannula insertion was unsuccessful and we stopped to try and warm her hands in a bowl of warm water. So here we are at the clinic with two oncology consultants, (their protocol is that if there are 2 unsuccessful attempts, another consultant has to try) a specialist nurse and a bowl full of water filled with toy frogs. Needless to say we all had quite a bit of fun and got our hands wet except Paige of course who refused to comply. The Oncology Pediatric Consultants at QA are certainly a special breed and they do try especially hard to make Paige's journey as stress free as possible - Kudos to them! The third try was the charm but she was understandably distraught by then. But not too distraught to hear me promise to get her a pressie if she remained still. So three hours later we were on our way to the toy store. Her 'babies' now have a lovely bath and wooden bunk bed to sleep in!

Neutrophils are still holding at 1.2 based on yesterday's results so that she did playgroup and a quick visit to the Nursery today. She oficially starts on Monday 11th! Quite exciting for her and scary for me.

Good news - end of treatment has been confirmed for July 12th, with her last lumbar puncture and bone marrow biopsy on June 4th.

Her next LP is due on March 12th.

Not so great news one of the kids that we've met on our journey has been diagnosed with another unrelated type of cancer 9 months after being given the all clear for his first type, he shares a birthday with Paige and will be just 4 years old this year. His name is Clayton and he is undergoing surgery today to remove his tumor after unsuccessful rounds of Chemo, please pray for him and his family and keep them in your thoughts. This injustice to him is almost too much to bear and is painful just writing about it............

4 February 2013

Lots Happening!

Since our last blog we've had to deal with snow, a couple of trips to the hospital low neutrophils and Russell being away for a couple of nights.

We've pulled through with the help of our new friends Rachael and Oliver (parents of one of Samuel's classmates) who kindly offered to do both ends of the school run because Russell was away and Paige has neutophils of 0.3! and particularly our neighbor, Naomi, who came to our rescue, or rather my rescue on the night of the heavyish snowfall. Post Paige's recent hospital visit she continued with a hacking cough and very labored breathing. After consultation with Dr Millard I administered an inhaler but was still not happy and Naomi knowing me as well as she did, offered, AND took us to QA to have Paige reviewed. Her chest was clear..... she was just very badly congested - I was so relieved that I didn't even remember to feel silly! Naomi even arranged to borrow an electric vapouriser for Paige and picked it up on our way home - You are a star Naomi!

Paige enjoying her 10 minutes in the snow....poor child was so wrapped up she could barely move, complete with insulated wet gear, ear muffs, hat, scarf, gloves and two pairs of socks. All of this of course over her regular clothes and a cardigan.

Since then her cough has cleared with the aid of a vapouriser, humidifier, and strengthening blood count. She continues to blossom and flourish, her hair has grown so much she can now even have pony tails, of course they only lasted as long as the photos, but so what?! Her weight is holding steady just over 12kgs and everyone who sees her comments of how well she looks.

Her language and ability to manage her parents have also improved with comments like "ok mummy it's time to get lunch sorted" or "I'm a bit busy right now mummy, ok!"

She had chemo last Monday and was an absolute star about having her cannula inserted and thereafter chemo administered. Russell apparently gave her the option to look on at what they were doing or have the team do the necessary using him as a human shield. Of course she wanted to see what was being done and was quite well behaved all things considered! We even manged an uneventful week of dexamethazone, she started eating at the tail end and has stopped yet, when she stepped on the scale last night she was a whopping 12.8kgs.

Jenny her favorite Community nurse came over to get blood via a finger prick this morning and it went really well, it's probably a combination of Paige getting more accustomed to the procedure (yeah right) or that she knows and trusts Jenny. I firmly believe that it's the latter. On the previous instances we had to firmly restrain her during the process. So well done Jenny and Paige!!!

The biggest event of last week was our decision to start Paige at WestHill Park from March this year. I met with the Principal of the school and the Head of the Nursery. They were very flexible and extremely co-operative. They are quite ready to put all the required systems in place to accommodate Paige and to be as flexible as she requires - what more could a mother possibly ask for? I think she is quite ready for more stimulation than she can get at home. I am also quite anxious for her to socialize with normal kids her own age, be in a setting that is NOT a hospital and also exist with us. I have to admit just talking about it made me have butterflies in my stomach. We both need this, me being able to let go and her starting to find her own way.......

So great things ahead, bloods are good based on today's results, neutrophils are up at 1.4 and her oral chemo has resumed.  The next step is repeat bloods on Monday and thereafter the go ahead for our Trini weekend in Bath! We are hoping to spend to spend next weekend with two of my school mates Margaret and Asha who now both live in England. It promises to be quite interested three Trini women, a Bajan, an Englishman and a Danish man :-)