Last week, Mandy had a drug to increase the amount of bone marrow cells. Ready for Harvesting at BCH.
Today, the day 23 February is the day the harvesting happens, a mile stone in the treatment of Kim, and a big day for Mandy. It not everyday you have a procedure like this. And I can tell she nervous. Trying to Park a Over hight* vehicle by the BCH is not easy. So Street parking it is, down side, it bloody expensive.
The Receptionist looks up from the computer, I give her the details of the letter. “ What part of Wales are you from” She asks. I sigh “ about 3 miles from the border in England” She smiles. As We walk down to the day ward, I wonder about my accent and how here I sound Welsh and in Aberystwyth I sound like I come from the Midlands.
On the ward. Mandy is checked over again, as the aspiration is done under general anaesthetic. So blood pressure, oxygen level, Hight, weight** and a few others are done so they can get the amount right.
Mandy gets into a unflattering little Number, that showed a strip of her back to the world. Soon it is time for her to head off to the theatre.
As she is wheeled off. I am left there to wonder about the procedure she is about to have. And the strength she must have to go though the mill for her sister. Then the worry started to creep in.
I head outside to have a smoke, put another parking payment ticket on the vehicle. I start to think about what is going on in a theatre in the the hospital.
Mandy lying on her side, A large gauge needle is pushed into the hip bone***, and the fuild in the bone marrow including the Hematopoietic stem cells, that are needed drained into a bag. But it not just one needle its two, one each side of the hips.
She looked quite white when she returned to the day ward and totally out of it. She slowly came around from the anaesthetic. Had something to eat and after being checked was deemed fit to go home.
There where some rules, Rest, take iron tablets and change the covering regularly. She was quiet going home, and fell asleep for most of the journey. Poor thing, she had given so much to this. A lot more than just the bone marrow. She had given it her all, her heart and soul. The love she has for her sister, at the very core of this selfless painful act in a bid to save her sister.
* A vehicle that is over 2 metres in hight.
** She does not like being weighed. And being a gent I did not asked what it was.
***The crest of the ilium for the medical minded amongst you.
whats the odds
Here is a quickly update on what happened since the last post.
Kim had a ECG* to check up on her heart murmur.
She was moved to an Isolation Room.
She was not well at all on her 17th Birthday.
I am visiting Kim with Mandy, and Kim's birthday presents. She is not well, I stop at the door to look at her notes, as Mandy heads with her presents.
It does not look good she has a chest infection. As I look at her chart the consultant arrives, We head into a small office near by. “ She not well at all, and it does not look too good to me” I said. This line started a convocation that I found hard. The Bottom line was a decision, well more of a statement.
' If we hold off on the bone marrow, and treat the infection, she dies. If we do the bone marrow treatment she could die' and the odds. I knew it was not good, as the consultant took a deep breath and gazed over at Kims notes for a second then looks at me. “20% chance of survival, 80% She wont. If we hold off, its almost 100% chance she wont survive beyond 2 weeks”
This knocked the wind out of my sails. I know am straight talking with medical staff, and get it back from them. I would not have it any other way. But nothing prepares you for odd like that.
With my heart sunken and heavy, I when into see Kim. I put on a brave face. Kim looks at me, I have a feeling she can see though the mask of a battle hardened Volunteer First aider into my soul and see the dark side of failed CPR, major trauma, and the news I have just received.
Mandy had helped her open her birthday presents, that were laid out all over the bed. Mandy asks for some money to go grab a drink. When she leave Kim turns to me, we look at each other with a knowing look and kim says
“I'm dieing”
*Electrocardiograph – A machine that show the Electrical activity of the heart
Kim had a ECG* to check up on her heart murmur.
She was moved to an Isolation Room.
She was not well at all on her 17th Birthday.
I am visiting Kim with Mandy, and Kim's birthday presents. She is not well, I stop at the door to look at her notes, as Mandy heads with her presents.
It does not look good she has a chest infection. As I look at her chart the consultant arrives, We head into a small office near by. “ She not well at all, and it does not look too good to me” I said. This line started a convocation that I found hard. The Bottom line was a decision, well more of a statement.
' If we hold off on the bone marrow, and treat the infection, she dies. If we do the bone marrow treatment she could die' and the odds. I knew it was not good, as the consultant took a deep breath and gazed over at Kims notes for a second then looks at me. “20% chance of survival, 80% She wont. If we hold off, its almost 100% chance she wont survive beyond 2 weeks”
This knocked the wind out of my sails. I know am straight talking with medical staff, and get it back from them. I would not have it any other way. But nothing prepares you for odd like that.
With my heart sunken and heavy, I when into see Kim. I put on a brave face. Kim looks at me, I have a feeling she can see though the mask of a battle hardened Volunteer First aider into my soul and see the dark side of failed CPR, major trauma, and the news I have just received.
Mandy had helped her open her birthday presents, that were laid out all over the bed. Mandy asks for some money to go grab a drink. When she leave Kim turns to me, we look at each other with a knowing look and kim says
“I'm dieing”
*Electrocardiograph – A machine that show the Electrical activity of the heart
The train now arriving
As the Train neared Smethwick Galton Bridge, I mulled over why I was sitting here.
Mandy and me are travelling to Birmingham Children's Hospital (BCH), For her to be check for Bone marrow harvesting. I have a problem with the brakes on the landrover, Not the best thing to have if you are travelling to Birmingham. So I decided to get the train instead. Allowing me time to think about the problem.
The train Pulls into Smethwick Galton Bridge, our change over point for Birmingham Snow Hill. As we alight, I Look at the time, 1hour 22 minutes not bad. 15 minutes till the train to Snow Hill, Just enough time for a smoke. Handy the timetable being set up like that. Since the ban on smoking on the platform, but I don't think the timing is for smokers.
It was only a 10 minute ride to Snow Hill, and 6 minute walk* to BCH. We book in, wait a bit, then go in. Mandy had in Shrewsbury had the compatibility tests, where she was unwell, well went white, cold, clammy. All the sign of shock really, when the bloods where taken. So was not looking forward to this one bit. Being called in.
We sit down in a the consulting room. As the 3 people introduced themselves and I instantly forget they name and what they did in the team, typical of my memory**. After being told there would be no bloods taken today, Mandy relaxed a bit. She was asked if she was ok with the taking of bone marrow, as they have the incident at Shrewsbury in her notes.
Then it was checks of blood pressure, temperature, questions about her previous medical history, what medication she takes if any, her current health, and her hight and weight measured. With all the check done. She was asked, If she was giving her bone marrow of her own free will. A bit of an odd question you may thing, but it to stop kids being forced into having harvesting done against they will by their parents.
Mandy replies with “ I'm a match, Would you walk away from an chance to help your sister in a big way? “ The Doctor agrees that, she would do the same for her siblings. And the appointment is over.
As we leave the hospital, I give Shell a ring to tell her we are done. She tells me Kim has had her line replaced, She is a bit sore and uncomfortable for now, but that will settle down later today. Well at least she has a new line for the Bone Marrow treatment.
We head back to Snow Hill and on to home. Its nice to take a break from driving and let the train do the work.
* 0.4 of a miles for the geeks among you. To work out my walking speed.
** I am surprised I have got this far with the blog.
Mandy and me are travelling to Birmingham Children's Hospital (BCH), For her to be check for Bone marrow harvesting. I have a problem with the brakes on the landrover, Not the best thing to have if you are travelling to Birmingham. So I decided to get the train instead. Allowing me time to think about the problem.
The train Pulls into Smethwick Galton Bridge, our change over point for Birmingham Snow Hill. As we alight, I Look at the time, 1hour 22 minutes not bad. 15 minutes till the train to Snow Hill, Just enough time for a smoke. Handy the timetable being set up like that. Since the ban on smoking on the platform, but I don't think the timing is for smokers.
It was only a 10 minute ride to Snow Hill, and 6 minute walk* to BCH. We book in, wait a bit, then go in. Mandy had in Shrewsbury had the compatibility tests, where she was unwell, well went white, cold, clammy. All the sign of shock really, when the bloods where taken. So was not looking forward to this one bit. Being called in.
We sit down in a the consulting room. As the 3 people introduced themselves and I instantly forget they name and what they did in the team, typical of my memory**. After being told there would be no bloods taken today, Mandy relaxed a bit. She was asked if she was ok with the taking of bone marrow, as they have the incident at Shrewsbury in her notes.
Then it was checks of blood pressure, temperature, questions about her previous medical history, what medication she takes if any, her current health, and her hight and weight measured. With all the check done. She was asked, If she was giving her bone marrow of her own free will. A bit of an odd question you may thing, but it to stop kids being forced into having harvesting done against they will by their parents.
Mandy replies with “ I'm a match, Would you walk away from an chance to help your sister in a big way? “ The Doctor agrees that, she would do the same for her siblings. And the appointment is over.
As we leave the hospital, I give Shell a ring to tell her we are done. She tells me Kim has had her line replaced, She is a bit sore and uncomfortable for now, but that will settle down later today. Well at least she has a new line for the Bone Marrow treatment.
We head back to Snow Hill and on to home. Its nice to take a break from driving and let the train do the work.
* 0.4 of a miles for the geeks among you. To work out my walking speed.
** I am surprised I have got this far with the blog.
First visit to Kim in QEH
Its Saturday, its been 3 day since Kim move to Queen Elizabeth and I just found something out as I try to park up. That my vehicle wont fit under the hight barrier at the car park, and the Parking staff are really nice and helpful people. After they pointed me to a parking bay with a parking slip, I head in to try and find the ward.
I have been to small universities than this. I stand there looking at the map. 4 zones red,orange, purple and green. 6 floors on each. So with a rough idea of where I was going in mind, I headed off to the right colour zone. I found the ward. The colour and floor system works quite well.
“Have you found your internet dongle” I say with a smile, “yes, you know that” is the reply. She lost it a day or so before. We start chatting about the move.
“I wish it I was closer to home, I miss you visiting. Most of the other patients don't talk English” I looked around, and yes the ward she was on was multicultural. I look back at Kim “ They are probably secure in there first language, as you are in type communication” Kim nods in agreement.
We carry on chatting for a while, about all sorts of things. Before I pick up a a big bag of washing. And head off back to where I parked.
Now it is time to sit in my metal bubble, travel, think, worry.
I have been to small universities than this. I stand there looking at the map. 4 zones red,orange, purple and green. 6 floors on each. So with a rough idea of where I was going in mind, I headed off to the right colour zone. I found the ward. The colour and floor system works quite well.
“Have you found your internet dongle” I say with a smile, “yes, you know that” is the reply. She lost it a day or so before. We start chatting about the move.
“I wish it I was closer to home, I miss you visiting. Most of the other patients don't talk English” I looked around, and yes the ward she was on was multicultural. I look back at Kim “ They are probably secure in there first language, as you are in type communication” Kim nods in agreement.
We carry on chatting for a while, about all sorts of things. Before I pick up a a big bag of washing. And head off back to where I parked.
Now it is time to sit in my metal bubble, travel, think, worry.
What a lovely trip.
Kim is heading off to Queen Elizabeth Hospital Birmingham to be checked over by the consultant there, with a view to having a bone marrow transplant. Mandy was going too to be checked for compatibility.
We are sit with Kim as the transport turns up to take us to Birmingham, as I head to get on the vehicle, I wished the back door would have been a bit dirty, so I could write a last bit of a biscuit name in it as the last 3 letters of the number plate was hob.
The journey to Edgbaston was uneventful. We arrive to see the square clock tower of the brick built hospital that definitely has a Art Deco influence in it design, the utilitarian end of it.
We find the waiting area, and started chatting, about how the snow that fell the day before had not stop the trip. Coco the rescue lab we were babysitting at home, Kim was happy that Billy had a friend to play with for a bit. Oh and the joking about shell kissing her 2 days before.
This joking starts a conversation about shells inability to get over the mental block that stops her from visiting. This upset Kim a bit as she want to see her mum, she missed her mum. You could see it in her eyes, in her body language. Contact over phone and the internet was just not enough for Kim need for her mum.
A dark feeling started to cover my heart and soul at this turn of conversation. Ask I looked at Kim and my hands trying to think of something to say, we were called in.
The consultant, a lovely woman. Chatted about Kim, Looked at the notes, talked to Mandy. As she was under 16 she would have to be checked and processes by Birmingham Children's Hospital. The consultant wants to transfer Kim over to the QEH tomorrow, and start the prep work for a bone marrow transplant.
As we left I wondered how successful a bone marrow transplant would be in defeating the leukemia.
Fast Rhythm
Limit point, mirror, side wind, what's that car in front going to do. I don't pay attention to the fidgety and nervous Shell in the passenger seat. I don't know if it's the change from laid back driving to Focused driving to make the best progress to the hospital or the phone call we had that started this all off.
Maybe it's a mix of the two. As I park up I can start thinking about the call we had. Kim has been rushed to ITU for something, we don't know where that is so we head to the ward for directions.
As we get to the ward, Kim is wheeled out of the lift.
She is wearing a 100% non re-breather Oxygen mask, Looking tired in her bed. Kim eyes light up when she see her Mum standing there. It was the first time, Shell had been to see her in hospital. I leave Shell and Kim to have a quite mother daughter moment together as I went to speak to the Duty Doctor.
We talked about the Oxygen mask, It was only being used to keep the air going into Kims lungs clean. Then I asked what had happened, as like most Doctors she used the common lowest denominator medical talk. “well Kim heart when a little fast, and we had to take her down stairs to help her with it. We did not mean to scare you with the phone call” the Doctor smiles as she says this.
“So what was Kim heart rate?”
“Quick enough to have us worried”
“how quick is that??”
“fairly quick”
At this point I was getting a bit miffed that my question had not been answered.
“So how how many Beats per minute was her heart going at ??”
“198”
“198, damn a AED would shock that rhythm” I reply
The Doctor looks a bit interested that I know it above the read threshold of a Automated External Defibrillator.
She talks more free about the stats of the event, before I went back to Shell and Kim.
Shell look at me a bit worried as I asked Kim how she is feeling. “ Like I have run a bloody marathon” “ well your heart was going like you were doing one, but it all under control now” I reply. “well I wish it would just fucking behave” Kim says with a half smile.
The doctor is hanging around outside the Room as we leave. I am talking to shell about it, trying to set her mind a ease a little. I think it worked.
Maybe it's a mix of the two. As I park up I can start thinking about the call we had. Kim has been rushed to ITU for something, we don't know where that is so we head to the ward for directions.
As we get to the ward, Kim is wheeled out of the lift.
She is wearing a 100% non re-breather Oxygen mask, Looking tired in her bed. Kim eyes light up when she see her Mum standing there. It was the first time, Shell had been to see her in hospital. I leave Shell and Kim to have a quite mother daughter moment together as I went to speak to the Duty Doctor.
We talked about the Oxygen mask, It was only being used to keep the air going into Kims lungs clean. Then I asked what had happened, as like most Doctors she used the common lowest denominator medical talk. “well Kim heart when a little fast, and we had to take her down stairs to help her with it. We did not mean to scare you with the phone call” the Doctor smiles as she says this.
“So what was Kim heart rate?”
“Quick enough to have us worried”
“how quick is that??”
“fairly quick”
At this point I was getting a bit miffed that my question had not been answered.
“So how how many Beats per minute was her heart going at ??”
“198”
“198, damn a AED would shock that rhythm” I reply
The Doctor looks a bit interested that I know it above the read threshold of a Automated External Defibrillator.
She talks more free about the stats of the event, before I went back to Shell and Kim.
Shell look at me a bit worried as I asked Kim how she is feeling. “ Like I have run a bloody marathon” “ well your heart was going like you were doing one, but it all under control now” I reply. “well I wish it would just fucking behave” Kim says with a half smile.
The doctor is hanging around outside the Room as we leave. I am talking to shell about it, trying to set her mind a ease a little. I think it worked.
The Green Man
I have just finished a duty with the Voluntary Ambulance Society I am a member of, and only a few miles away from the hospital. So I decide to pop in and see how Kim is.
It's funny the looks you get walking on to a ward wearing the Ambulance greens and hi vis bomber jacket of a well know First Aid charity. I do wonder if the nurses heart missed a beat when she saw me. But was nice and polite when she asked if she could help, she laughed when I said I was Kim stepdad. Commenting that she did not recognise me without my Blue & Black work jacket.
As usual before I head in to see Kim I look at the obs sheet, but today I have the feeling I am being watched. I have a couple of the patient on the ward, a nurse and the ocupent of another cell, sorry Isolation room looking at me. Oh well, mental note. Don't turn up in uniform again.
As I carry on with the obs sheet, I hear the voice of a friendly male nurse** “So you can actually read them or are you just trying to scare the patients” he jokes, I laugh as he carries on “ It only the 31th Jan, It not Halloween yet” “ yes, very funny” I laugh “hows she been today” “well, its she is still not eating much.” In a split second I have gone from joking to extremely worried and a wave of down hearted feeling washed over me.
Its a bit weird putting just a apron on in uniform, usually barrier nursing with the VAS is Gloves, apron, arm cover and if need mask. So I felt a bit under dressed this time, as I entered the cell.
I took a deep breath and started a hard conversion with her over food.
*VAS
**I think he was a Staff Nurse.
It's funny the looks you get walking on to a ward wearing the Ambulance greens and hi vis bomber jacket of a well know First Aid charity. I do wonder if the nurses heart missed a beat when she saw me. But was nice and polite when she asked if she could help, she laughed when I said I was Kim stepdad. Commenting that she did not recognise me without my Blue & Black work jacket.
As usual before I head in to see Kim I look at the obs sheet, but today I have the feeling I am being watched. I have a couple of the patient on the ward, a nurse and the ocupent of another cell, sorry Isolation room looking at me. Oh well, mental note. Don't turn up in uniform again.
As I carry on with the obs sheet, I hear the voice of a friendly male nurse** “So you can actually read them or are you just trying to scare the patients” he jokes, I laugh as he carries on “ It only the 31th Jan, It not Halloween yet” “ yes, very funny” I laugh “hows she been today” “well, its she is still not eating much.” In a split second I have gone from joking to extremely worried and a wave of down hearted feeling washed over me.
Its a bit weird putting just a apron on in uniform, usually barrier nursing with the VAS is Gloves, apron, arm cover and if need mask. So I felt a bit under dressed this time, as I entered the cell.
I took a deep breath and started a hard conversion with her over food.
*VAS
**I think he was a Staff Nurse.
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