Tuesday, 9 November 2010
Sunday, 31 October 2010
When Catherine was in Leeds hospital, the only friend we had who was nearby was Jonathan. Immediately that he heard about Catherine's diagnosis, he was at the hospital. I remember the first time he visited, in his Salvation Army uniform to make sure he could get to see us (supposedly Army uniform gives a little bit more authority than just wearing civvies!). We were so pleased to see him, and practically every day after that, Jonathan was at the hospital, being a huge emotional support for all of us. He helped me move my stuff in to the 'Home From Home' house for parents of ill children. He even took me to ASDA where we bought some stuff and some very stylish (and funny) slippers for Mark, and he bought copious amounts of chinese take away. He spent his own money travelling to-and-from that hospital, coming to visit even when he had had long days at work. Basically, he was a God-send. And if it wasn't for Jonathan, we would never have had the Pray for Catherine site which still has 1092 members, all who prayed for Catherine to be healed: http://www.facebook.com/group.php?gid=71748450211&v=wall
Jonathan also arranged for Catherine to be prayed for by members of Rick Warren's Saddleback Church (then 15000 people), the General of The Salvation Army and other important figures in the Christian Faith. For this we are so grateful, as it made sure that God was able to do all the miracles we so wanted him to do. So much so that it only seemed right that he became 'The Godfather' to Catherine in April this year. His wife Nikki, who also travelled out of her way to visit Catherine in hospital, is now her Godmother. So now I have fully embarrassed them both, I shall go to bed. But thank you SO MUCH guys. We love you :)
Saturday, 30 October 2010
Two years of constant stress, worries about infections, side effects of treatment and getting a little girl through chemotherapy have really taken their toll. I am coping and getting through every day and I'm not even depressed. But emotionally there is a knot that I cannot untie. Mention Catherine to me and how great it is that she has finished treatment and you will get the expected 'Yes, it is great isn't it'. But I am not great.
My little girl has got through all this and mentally she is pretty much unscathed. She has a phobia of needles and sometimes talks about when her hair fell out, but otherwise she is doing ok. But all the 'keeping a stiff upper lip' and jollying Catherine along that I have been doing the last couple of years has not been good for me. All the playing down of Catherine's sickness and nausea, all the chivvying along telling her she would be ok, all the bouncing around to try and make her feel better, all the 'making normal' has driven me, quite frankly, mildly insane.
Smiling on the outside whilst my head was screaming 'MY LITTLE GIRL HAS CANCER. DOES ANYONE KNOW WHAT THAT MEANS??????'
Every day thinking and feeling I LOVE MY KID. WHY DOES SHE HAVE TO GO THROUGH THIS?
I sat with Catherine tonight on the sofa as she had leg pains. She had been out walking and her legs hurt. I nearly cried there and then. Painful legs were the first symptom of Leukaemia. I remember reading in my home doctor journal two years ago about painful legs and they were either a sign of growing pains or leukaemia. At the time I thought 'growing pains...that must be it. It could NEVER be leukaemia'. Oh how wrong I was.
Now I live my life in a weird sense of tension, constantly on alert. It is almost like I have been through a war zone and am now trying to believe it is over. And whilst I keep trying to fool myself that I am ok and Catherine is doing ok and everything will be fine now, my subconscious mind keeps telling me that life is actually quite dangerous and anything can happen at any time. Seriously, if in the next few days some trick-or-treater comes up and whispers 'boo' over my shoulder, I will leap out of my skin!
It isn't just Catherine's illness that I have dealt with over the past few years. I was diagnosed with heart failure after the birth of Catherine's brother and was told that I might live or die and that it was too early to tell (I was diagnosed April this year). Miraculously, God healed my heart but even after a miracle, I still feel like I have been in the trenches for too long.
So there you have it! And whilst I am so grateful to God for his healing of my child, and whilst I am so lucky that medical treatments mean she is still here, I am hurting. And I imagine that Suzanne is probably the only other person who reads this who might have some understanding of what on earth I am going on about...but then again there may be others and I might be wrong...
Tuesday, 12 October 2010
A much different day from 25/8/2008.
You may remember the blog posts from those early days:
Our Consultant is very pleased with her and is now referring her to a surgeon to have her portacath removed. We await the results of her bone marrow tests tomorrow. These tests check the bone marrow to make sure her cells are all working correctly and that all signs of disease have gone.
Our consultant says that based on the type of leukaemia she experienced and her responsiveness to treatment, statistically it is highly unlikely that it would return. She will be monitored closely for the next two years and will continue to receive check-ups until she receives the final 'all-clear' when she is ten. So whilst the treatment is over, for which we are so thankful after two years of constantly being 'on alert', we have to adapt to a different normal again. Catherine will receive monthly blood tests to begin with via a 'finger prick'. She feels pretty confident about having these tests done but is now starting to ask lots of questions about her treatment. Tonight she asked about what they did whilst she was having 'wobbly medicine' (general anaesthetic) - she has never asked about this in such detail before. She has also asked about writing her own story down to give to her school teacher as one of her homework projects.
She has also asked about when we are having a party to celebrate the end of her medicines. I replied that after she has her portacath removed, we will plan something special for her!
Thankyou so much for your support and prayers x
Monday, 11 October 2010
Saturday, 9 October 2010
Evidence of the last dose of daily chemotherapy. Here we have on the right, 'strawberry medicine', otherwise known as mercaptapurine. The left syringe is 'banana medicine' otherwise known as Septrin (to stop lung infections). The middle syringe is Dexamethazone, otherwise known as 'grumpy medicine' (Catherine's steroid). A daily occurrence that is no more...only Septrin for a little bit longer.
Friday, 8 October 2010
Saturday, 2 October 2010
Tuesday, 28 September 2010
Today I asked her how she felt about coming to the end of her treatment. She replied that she was nervous and excited but that she is scared about having to have all her immunisations again. She has developed a real fear of needles and I am not sure yet the best way to tackle this. I think I will need to talk this through with her consultant.
Friday, 17 September 2010
As Catherine's treatment gets closer to ending, my head is going into overdrive. I keep having flashbacks. Vivid flashbacks of the beginning of her treatment that just interrupt my usual daily thinking. I've found I can divide these into a few main images:
1. Mark and I wandering round the carpark at Jimmy's hospital trying to phone Lorraine, our support officer on our study placement, minutes after Catherine had just been diagnosed.
2. Being in the isolation room at Jimmy's, with Catherine, then aged 3, hooked up to 'melody' her drip (so-called because melody bleeped and was musical)
3. The day at The Royal Marsden when they couldn't get the cannula into one of Catherine's veins. It took five attempts because the chemo had made her veins less visible. The following day, they put a portacath in.
4. Speaking to the lovely surgeon after he had completed her surgery to implant the portacath.
5. Eating in the canteen at Leeds and staying at the 'Home from Home.'
I have been told that these flashbacks are known as 'processing'; I don't like it very much. I've also become abnormally sensitive to anything about children's cancer or hospice care. I was in the bank the other day and there was a collection bin raising funds for Butterwick Children's Hospice. Fancy trying to speak to the cashier whilst holding back tears! Very bizarre. Also the charity bags that come through or door to raise funds for children's hospices and cancer care just set everything off in my mind. Occasionally I look at her and the thought crosses my mind that without God and the medical profession she wouldn't be here now. Every birthday since her diagnosis I have just been like 'wow'. Fabulous!!!
Our Consultant tells us that this is probably going to be the hardest part of our journey - Catherine stopping chemo. We have been on 'alert' and just dealing with getting Catherine through this for two years and we now have to come to terms with what has happened. I still think that the early days of diagnosis were the hardest, but the 15,000+ people praying for Catherine certainly shared the burden and played a huge part in her healing (thankyou, Jonathan, for setting that up for us - your Goddaughter loves you and so do we).
We still have two years of checks to go until Catherine is given the all-clear. She is in remission, which came unusually early of course (God is good), but it is now time to adapt to another new way of life. Catherine cannot remember a time without medicines and hospital trips to see her Consultant. I imagine this blog will be used quite a lot in the next few months. It will be a place to share memories and Catherine's progress. It will be a place to give thanks and let everyone know the people that most helped in her treatment - the friends and the medical professionals who have done so much.
So there will be more to read in the coming days, and as Catherine has taught us, we should always continue to expect miracles. She was the one in six million children that was diagnosed with leukaemia. Now she is healed we can all look forward to the blog entries of 'what Catherine did next' :)
Friday, 27 August 2010
Catherine is continuing to do well on her treatment, so much so that when we saw her Consultant we spoke about how we would be ending Catherine's treatment! It is hard to believe but we are coming to the end of this two-year journey.
On August 2nd 2008 we were told the news that our three-year-old daughter had leukaemia. On October 12th 2010, Catherine ends treatment, completely healed of that monster. God has been so good, and has faithfully carried us through these tough times. I don't know what we would have done without Him, or all the fantastic medical staff who have treated her. But here we are at the threshold of a new time for Catherine - a new life without medicines. She cannot remember a time without chemotherapy and hospital visits, but now she has a new life to look forward to and we thank God for it.
She will have two more doses of Vincristine chemotherapy before the end of treatment, a final bone marrow test to establish everything is ok and then her portacath will be removed. Then begins the blood tests every two weeks for three months - then every six weeks until the 2 year mark. At the moment Catherine has no immune system again, but you can hardly tell as she is so bouncy and lively. Her mood is the only indicator that she has low neutrophils. We are hoping that her immune system bounces back soon so that she can receive her chemotherapy on Tuesday.
Thankyou for so faithfully praying for us. We will always appreciate what God has done through your prayers.
Thursday, 22 July 2010
Catherine is doing well on her treatment. She had chemotherapy in her spinal fluid this week and her back is still a bit sore from the lumbar puncture, but otherwise she is ok. I can't believe how energetic she is whilst still on chemo - her consultant said it will only increase when her treatment finishes! How will I cope??
Wednesday, 7 July 2010
Catherine also got her school report today and she was very excited to hear how well she had done. She is looking forward to going back to school now which means she is well and truly on the mend. When she felt poorly, all she wanted was to snuggle up with me on the sofa or go to bed.
Thanks so much for all your prayers. We are now hoping that Catherine will be back at school next week as long as her immune system has recovered. We will find this out from a blood test on Monday.
Friday, 2 July 2010
We have a bit of a weird situation though. When they analysed Cath's bloods, they found that her neutrophils had not come back up - they are still 0.01. However, her overall white cell count was 4.1. The doctors say this it is rare for this to happen during treatment but not unheard of, and not to panic yet. As a precaution, they also checked her blood to make sure there were no 'naughty blood cells'. There were none there, but it is still a bit of an odd situation to have a reasonable white count (by treatment standards) and no immunity.
We need her neutrophil count to come back up as soon as possible. Please pray that her bone marrow continues to produce a healthy abundance of neutrophils.
Cath is feeling much better in herself but can't go back to school until she has a neutrophil count of at least 0.5
Thursday, 1 July 2010
Tuesday, 29 June 2010
Friday, 25 June 2010
We are still on track to finish chemo in October and Catherine's consultant says she is doing extremely well. Praise God!
Sunday, 25 April 2010
Prayers would be welcome as Mark will be away and this will be the first time I have taken Catherine to Theatre without him (plus I will also be juggling this with looking after a small baby). It is a bit more nerve racking as normally we help eachother through by being there as a family. Mark's mum will be coming with us, which will help.
Catherine is excited as she will be getting her "wobbly medicine" from the anaesthetists. I am nervous as it is a full day, and Catherine will not be able to eat anything after 7am (the procedure may be as late as 3pm). It is not easy keeping a hungry Catherine entertained, but thankfully there is normally a play specialist and some crafts on hand, and hopefully this will distract her.
Please pray that the procedure goes well and that she manages to keep her hair, as this is quite a strong dose of chemotherapy. It would be good if she kept her hair as she had her first hair cut since beginning treatment on Saturday.
Monday, 29 March 2010
She is very excited about her birthday on Saturday and she will be having a small party on 17th because her actual birthday falls on Easter Saturday (not perfect timing when your parents are Officers!).
Catherine will complete her treatment in October this year and will then have to go for regular check-ups. Thanks everyone for your ongoing prayers for Catherine - I'm going to sign off now and give her her night-time cuddle!
Wednesday, 10 February 2010
Catherine continues to do well on treatment. She had a general anaesthetic and chemotherapy last week and her blood counts are now starting to drop. In PE at school on Tuesday she got upset and sat out for the session as her Haemoglobin is dropping, meaning she feels more tired. The next few weeks she may start to feel a bit rough as her blood counts drop as part of the treatment.
Please continue to pray that she doesn't have any infections or side effects from the treatment. Thankyou.
Friday, 29 January 2010
Tuesday, 19 January 2010
I was talking with a friend the other day about a tragedy that had happened to someone. I had felt sad about the tragedy and frustrated that the person involved would now be limited in what they could do. My friend said 'But we do not see the whole picture - we do not see what God is doing'.
Today we received some special news about Catherine's treatment. You may remember that last year Catherine was offered randomisation as part of a trial concerning treatment for ALL. The usual treatment for ALL was two intense doses of chemotherapy, and each of these chemicals, whilst being the right chemicals to kill the bad cells, meant that the risk of long-term side effects could increase.
At the time, God told us that we would only receive one dose of chemotherapy: http://catherineisgreat.blogspot.com/2009/01/randomisation-results.html
We were both a bit nervous about this because if we agreed to the single dose, we didn't know if it would be the best decision. However, because we both felt so strongly that God was saying Catherine would and should receive one dose, we went ahead with the single dose.
Today at the hospital we bumped in to a lady whose daughter was also receiving treatment and she told us that the results of the trial had come through.
The single dose of chemotherapy has now become the standard treatment for Acute Lymphoblastic Leukaemia. No benefit can be found in having the two doses of treatment. It will also mean that for some children diagnosed with ALL in the future, they will have a shorter and less intense treatment regimen. Less side effects, less nausea, less time with hairloss, less time with infections, less time with low immunity.
One dose of chemicals such as Doxorubicin will reduce the possible side effects of additional cancers and leukaemias that could have been prompted by over treatment.
A year later we have found out that Catherine has been on the best possible treatment for her particular diagnosis. She has received the best possible dose and did not receive the second dose of chemotherapy. In the future, because of the trial and the hard work of the research doctors, children will be able to receive lower doses of chemotherapy with the same excellent results.
I thank God for his guidance in this decision and the fact that Catherine received exactly the correct treatment plan, even amid the uncertainty at the time. Trusting God may not always be easy when we cannot see the fuller picture, but I thank him that he continues to hold us in the palm of his hand.