He Knows the Way that I take

 

As this is a holiday weekend here I’ve had more spare time than usual, so today I decided to take myself to the local woods  for a walk. As soon as I arrived there, I realised that it was during this very week in 2013 that I had walked there with a friend while Leah and Nic had their photoshoot done. Alison Hill did an amazing job of those photos and Leah loved them.

I was so emotionally fragile at that time (shortly after Leah had been diagnosed) and a walk in the woods with a friend was just what I needed. As all of these memories came flooding back I was glad that the woods were very quiet today. I needed to be alone with my thoughts. As I walked along I enjoyed taking photos of anything that caught my eye:

When I came to my favourite bench, I sat for a while and studied the photos that I had taken. Most of them were of the path. I reflected on this for a while, then I used my phone to look up Bible verses that mention the word ‘path’. I was somewhat surprised to discover that the word path is used quite often in the Bible. Here are some of the verses I found:

You make known to me the path of life;

   you will fill me with joy in your presence,

   with eternal pleasures at your right hand.

Psalm 16:11 NIV

 

Your word is a lamp for my feet, a light on my path.

Psalm 119:105 NIV

 

Trust in the LORD with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight.

Proverbs 3:5-6 NIV

 

Earlier today I had also read this excerpt from Streams in the Desert which mentions paths:

After coming home from my walk I looked in my diary to see exactly when I had taken Leah for her photoshoot and what I had written about the event – I had certainly been in a very distressed state that day due to all that was happening. As I glanced over some of my journal entries, my attention was suddenly caught by something I had written on the 5th January 2014 while I was sitting with Leah in the ICU in Belfast City Hospital. Leah’s diagnosis had recently changed from PCP pneumonia to probable pneumonitis. On the 4th January, one of the consultants had taken me aside and had spelled out in words of one syllable what the implications of this new diagnosis were i.e. that Leah was very unlikely to survive. I was still praying and believing for Leah to be healed but as I wrestled with God regarding all that was happening, I had transcribed some words of an old hymn into my journal:

Yea, choose the path for me, although I may not see,

The reason Thou dost will to lead me so.

I know the toilsome way will lead to realms of day,

Where I shall dwell with Thee, O mighty Saviour.

 

There is that ‘path’ word again, all of this serves to reinforce for me the truth of Job 23:10; “He knows the way that I take” and He is with me every step of the way.

 

R.I.P. Caiden Tang

In the mid eighties I worked as a nurse in England. Part of that time was spent doing agency work and I worked in several different hospitals.

Everywhere I worked I met Irish nurses, so I could be forgiven for assuming that all English hospitals have a fair complement of Irish nurses.

What a disappointment when Leah and I got to Bristol Children’s Hospital and discovered NO Irish nurses. I asked a nurse on the Transplant Unit where all the Irish nurses were and he told me that he had worked in the hospital for 15 years and had met only one Irish nurse in all that time. I was gutted.

Leah and I were so far from home and family. I longed to hear a familiar accent and meet someone who understood our culture. Then I discovered that there was another child from N. Ireland on the unit – Caiden Tang. His mum Kathy and I instantly became friends – partners in crime more like!

Kathy and I were each in lockdown in isolation cubicles with our very sick children so we relied on snatched moments at the linen cupboard or in the changing rooms to have a quick conversation – and even a giggle. We both knew that a sense of humour was essential in helping us retain our sanity.

Caiden was five years old and was very unwell after his transplant. He was so weak that he had to learn to walk again. When I was entering or leaving the BMT Unit I used to wave into Caiden. His bed was full of teddy bears, his cubicle walls adorned with his absolutely favourite band – One Direction.

Caiden was first diagnosed at the age of five months so Kathy had been on this road way longer than me. Kathy’s tenacity, courage and dogged determination to make sure that her child always got the best possible medical and nursing care inspired me greatly. Her sense of humour through it all was like a tonic.

Occasionally, if Leah’s boyfriend Nic was visiting her and Caiden’s dad Raymond was with him, Kathy and I got an entire evening together – now that was a treat! We spoke the same language – Norn Irish English and we had a similar sense of humour – a little bit crazy!

Children weren’t allowed in to visit on the Transplant Unit but Caiden had been stuck in a tiny isolation room for months and was desperately missing his older sister Ellie. Ellie was also desperate to see Caiden.

Kathy understood the importance of Caiden’s emotional wellbeing and the impact this could have on his recovery. So one quiet Sunday in August, Ellie was surreptitiously smuggled into Caiden’s room and the joy on their faces was very evident in the photographs.

Kathy and Caiden left Bristol the week before us. They had to fly back to Belfast by air ambulance as Caiden was still very unwell.

Back home Kathy and I kept in regular contact but were unable to meet up at that stage due to caring for our children and the fact that we don’t live near each other.

When Leah was critically ill in ICU in Belfast City Hospital Kathy sent me heartfelt text messages of support – the kind that only another “oncology mum” can write.

Kathy also posted a beautifully worded prayer request for Leah on Caiden’s Facebook page. This post received over 1,000 ‘likes’ and it encouraged my heart so much to know that so many people were praying for us and wishing us well.

I was so pleased in May 2014 when Caiden started to look so much better and was even managing to attend school. His progress was amazing.

Then in September came the news that I didn’t want to hear – Caiden had developed pneumonitis. This was the post transplant lung complication that had taken my daughter’s life. I definitely didn’t want Kathy to experience the pain of grief and loss that I live with on a daily basis.

Caiden had been diagnosed with lymphoma at 5 months old. He had come through so much. He was such a wee fighter and constantly amazed the doctors with his ability to recover against the odds – surely this couldn’t be the end?

Just because pneumonitis took Leah’s life didn’t mean it had to take Caiden’s too – every child’s medical situation is different. I prayed for Caiden to be healed, as did so many others. As the scene in ICU in the Royal unfolded, I cried many tears for Kathy and her family.

Along with Kathy I clung to each tiny bit of hope, while at the same time realising with great sadness that her journey bore so many similarities to the 2.5 weeks that I had spent in ICU with my own daughter. I prayed for healing for Caiden, for strength and wisdom for Kathy and the family circle.

Then this morning, on my youngest daughter’s 11th birthday, came the news that shattered my already broken heart.

The medical expertise and nursing care here is excellent

I just want to clear up some misunderstandings that may arise from some of my previous posts; the fact that none of the samples from Leah’s lungs have ever grown any bugs is not actually good news – a lung infection in a post transplant patient is potentially easier to treat than inflammation.

Inflammation of the lungs is called PNEUMONITIS and I’m told that in Leah’s case it’s likely to be an immune reaction similar to the graft vs host disease that she had in September, only way more serious. This type of immune reaction in the lungs is not to be welcomed.

Also, although I complain about the personalities of some of the doctors, I have no issue whatsoever with their medical expertise. I am very confident that they have my daughter’s best interests at heart and they are very vigilant about checking on her medical condition many times a day.

Even consultants not on duty in ICU that day will pop in just to see how she is doing. I also know that there are many in depth discussions amongst the medical team about her treatment plan.

Again, although I bemoan the lack of facilities for parents (or for any visitors in ICU) this is no reflection on the staff. The nurses are all extremely kind and caring and are very good at what they do & they show concern for my well-being as well as for Leah’s.

Nurses & some doctors have made various adjustments in order to make our lives here more bearable, within the confines of hospital policies and procedures.

Any negativity I have expressed about Belfast City Hospital is mainly as a result of Leah & I having spent 14 weeks receiving care at Bristol Children’s Hospital which is totally geared towards meeting the needs of families.

The move from a top class Children’s Hospital with a purpose built adolescent unit, to a very old hospital that is not used to accommodating the needs of young people and their parents has been a huge shock to my system.

However the medical expertise & nursing care here is excellent and I certainly wouldn’t want to give anyone the wrong impression in that respect.

 

No keeping this girl down!

Today Leah is medically more or less in the same place as yesterday.

The samples that were taken from her lungs on Thursday and were sent to the laboratory haven’t grown anything, so this confuses the PCP diagnosis a little bit and has led some of the docs to suspect that Leah may have pneumonitis, another complication of transplant.

It’s not one I fully understand but I think it could be a type of GVHD (graft vs host disease) or some other kind of auto immune condition triggered by the transplant process.

I have been told that the only way to prove/disprove the diagnosis would be to do a bronchoscopy and a lavage which at present they are reluctant to do, as Leah is so ill.

In the meantime they will continue treating her for everything that they can think of treating her for, including PCP, and wait to see what happens.

Leah is less sedated today, she’s sucking on a Polly Pineapple ice pop, but typed that she would prefer a coke float – no chance!

She also typed “what about maths exam 10th Jan” and I said “Leah you won’t be doing this exam”.

Then she typed “maybe God wants me to go back a year but maybe I could still have lunch & break with my form class Mr M lets them go down town” – going back a year at school is something that Leah has fought hard against since her diagnosis, but here she is trying to make the best of her situation – no keeping this girl down