Praise God

Catherine's blood counts are normal for the first time in two years. Her body is producing only lots of lovely good blood cells and she has grown 2cm since she finished treatment. Today Catherine has a cold, but because she now has an immune system we didn't need to go anywhere near the hospital! Her portacath is being removed next Tuesday under general anaesthetic. Prayers would be welcome for this please. God is Good!

The Godfather

I have been thinking recently about the people who have helped and cared for us whilst we were going through the rubbish that was Catherine's illness, and today I thought I would tell you about her Godfather!

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 :)

What to say?

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...

12/10/2010

12/10/2010 - the final day of Catherine's treatment.

A much different day from 25/8/2008.
You may remember the blog posts from those early days:
http://catherineisgreat.blogspot.com/2008/08/discussion-with-specialist.html

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

Tomorrow we are taking Catherine for her final bone marrow test and chemotherapy. It feels like it has been a long journey getting to this point, but one we have travelled with God. I feel it will be a hard day tomorrow. Catherine cannot eat until after her general anaesthetic and that may be at 3pm! I am hoping and praying that all goes well.

Photo evidence of the last days...

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.

Final bone marrow test and final chemotherapy

On Tuesday Catherine is having a general anaesthetic and her final bone marrow test to check that she is completely well. She will also be having the last intrathecal chemotherapy into her spinal fluid. Please pray that this all goes well. We are getting so close to the end. By the end of this month, Catherine's treatment will be over :)

Last daily chemo is TONIGHT!

This week we have seen the very last of Catherine's steroid treatment and tonight Catherine's daily chemo comes to an end! It will be very odd for Mark not to be giving her the nightly syringes of medicine. We now await a time for Catherine's final bone marrow test which will look at her cells to ensure she is completely well before stopping treatment. Thankyou for your ongoing prayers :)

Last Steroids - Whoop Whoop!!!!

Yesterday, Catherine had her last Vincristine chemotherapy. This means that this is the LAST TIME we are ever going to have to give Catherine the steroids that make her feel so miserable and low. I am delighted. No more 'grumpy medicine'. No more Catherine feeling really rubbish. All we have now is a few more days left of her daily chemotherapy medicines. It really is all coming to an end.

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.

Leeds 2008

Catherine - my one-in-six-million girl

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' :)

October 12th

It has been a while since I last updated here but believe me, no news is good news!

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.

End of reception

Tomorrow is the last day that Catherine will be in Reception - next term she will be in 'Year 1'. She is very excited but is going to miss her two teachers. In the morning we have been summoned to the award ceremony and it has been hinted at that Catherine may be getting an award! I have a feeling it may be for her dancing, but it certainly wont be for her attendance at school this year!!! Next year, she will be off treatment which is great as she will not miss half as much school. However, we will secretly miss 'hospital days' as it gave us a wierd sort of 'quality time' with our little girl.

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??

Smiling Catherine!

Catherine has started to pick up! We don't know her neutrophil count yet but we do know that this afternoon she was starting to smile and giggle again! It helps that she is now no longer on her steriod medicine. The steroid really effects her mood and appetite - she has been craving toast with Philadelphia for days!

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.

Good news and weird news

Catherine came home this afternoon! Her temperature is down and she has completed the course of antibiotics.

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

Improvements

Catherine's temperature has now come down but she is still receiving intravenous antibiotics in hospital. There was a small sign of a possible infection on her chest xray, but nothing to be too concerned about. They think it may well be viral but they are giving the antibiotics anyway just in case. Mark and Catherine are both still in isolation. Today Mark counted that there were 14 plug sockets in the room and 46 ceiling tiles. Thanks for praying.

0.02 neutrophils!

Cath is in hospital tonight with her daddy. She has some sort of infection and we will hopefully find out more soon. She has 0.02 neutrophils which is the lowest immune system she has had. Please pray that it is easily treatable with antibiotics and that she will soon be well.

Low neutrophils

Catherine has been doing well recently but is currently going through a period of low immune system which means she is getting various aches and pains. She has a tummy upset and gets odd pains in her ears that come and go. When we saw the ENT specialist, she said that Catherine didn't have any hearing problems apart from a very very slight loss of hearing on the lower levels. We were surprised to learn that this was not from the chemo but from the recurring ear infections she has had since her birth. But the ENT specialist gave us some spray to use in her ears if she starts to get another ear infection, so we have that on hand if necessary.

We are still on track to finish chemo in October and Catherine's consultant says she is doing extremely well. Praise God!

Prayers please as wobbly medicine approaches!

After a pleasingly uneventful time on daily chemo and monthly Vincristine chemo, this Tuesday Catherine is having a general anaesthetic and lumbar puncture followed by some chemotherapy into her spinal fluid.

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.

Update

Catherine continues to do well on her treatment, although we have been told that she is being referred to the ENT specialists as she keeps getting ear infections. Our consultant is keen to get her ears checked because if her eardrums keep bursting this will not be healthy for her long-term.

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!

Catherine and Toby

New addition and Catherine

Sorry for lack of updates recently but new babies take up a lot of time! Catherine's baby brother has become a firm favourite with Catherine and she enjoys having him around. He still needs to organise his sleep/wake body clock which is why I haven't written for a while!

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.

A brother for Catherine!

Catherine's brother was born on January 21 2010 at 11.10pm :)

Special news

"We may make our plans, but God has the last word." (Proverbs 16:1)

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.

Holidays

Catherine is now back at school and has been enjoying seeing her friends. Her 'anti-spot' medicine has meant that she has avoided the chicken-pox scare again and she is feeling good. Since Catherine was diagnosed in August 2008, we have pretty much been unable to book any holidays as the effects of having a low immune system through her treatment has meant that even if we had booked something, she may have become ill and we would have lost the holiday. Catherine is due to finish her treatment in October this year, and so tonight we sat together and discussed what we might do to celebrate. Catherine would like to go on holiday somewhere with a pool, so at the moment we are thinking that a trip to Center Parcs would be good (it is also somewhere we could take her baby sibling). So at the moment, we are planning a celebratory holiday at Center Parcs to mark the end of her treatment. Tonight, Catherine asked to pray that one day she will definitely not have to have any medicines anymore - I think she will be amazed when, in October, there are just no more daily medicines to take and no more trips to hospital to have 'wobbly medicine'. There will, of course, be regular check ups. I've also heard that when treatment finishes, it can be quite an emotional time for everyone as we reflect upon what happened. But this holiday will mark the brand new 'no medicine' start for Catherine. Thank you for your prayers.

Ballerina

Catherine is doing really well on her treatment at the moment. Her hair is growing thicker and more lovely by the day, and her Consultant is extremely happy with her progress. Thanks to all your prayers, Catherine continues to do so well. This year, Catherine is hoping to start some proper ballet lessons. Just before she was diagnosed, she was attending some ballet lessons, but the illness (we didn't know what was wrong at the time) was making her too tired and weak to do them. Now she is strong and lively, and is really looking forward to getting back onto the dance floor! It is great seeing her leap around the room in her various ballet outfits. Thank you for your ongoing prayers. They still mean so much to us.