No more blood please!

A few transfusions later, Vega looked great before bedtime today. She was in a good mood, and we have had no bleeding since her platelet transfusion earlier today. Her mucositis is clearing and she has a very healthy appetite. Apparently her clotting factors are still not right, so more bloods were taken today and we shall get all the results at tomorrow’s ward round. I am feeling optimistic tonight, at least sort of.

I should have held my tongue with the “wharever next” business- her stool sample came back positive for C Diff, our old friend, hospital antibiotic resistant bug. Vega is being retested but she is asymptomatic and I feel rebellious tonight and will most likely refuse any treatment for it.

I think we will be leaving soon.

Now my mind is less clouded by worry, I am thinking ahead. 11 days ahead exactly, when she is due her next dose of Vincristine and steroids. I really think this whole affair had to do with a dose increase and a slowly developing intolerance/over saturation/sensitisation/call it what you like to the Vinc. My worry obviously now is that we will have a repeat of this in 3 weeks time. I am of course a total amateur, and could be entirely wrong, and I do feel quite a lack of information and even concern from the team here at Kings. Maybe they see this too often to really care. They see Vega on their ward round for a mere 5 minutes or so, whereas Ray and I are the ones carrying the burden of all the pain, tears, poop and blood for the remaining 23.55 hours of each day. Understandably we feel we have a more investing interest.

I thought I might get answers from the Marsden so I called today to discuss what to do. After I expressed my worry that Vega will have to go through this again, I was told there was no way to be sure if my suspicion was right until she had the next dose of Vinc and reacted like this again. I tell you I was pretty pissed by that! I told them that I would very much like to avoid this sort of trauma for Vega again- understandably, right?- and that I felt it was necessary to sit together and just look at the facts. I have now pointed out to the team at the Marsden and at Kings that Vega’s reaction to the medication is becoming more and more extreme for months and I felt pretty un-listened to.

Somehow I feel like they are all looking at me and seeing a classic worried-mother-of-child-going-off-treatment-soon. They pity me a little but mainly they have seen it all before and know I need to earn my stripes.

But then what kind of mother would I be if I would not have a desire to spare my child another episode of this kind. If I would not feel like battle stations to avoid this again at all costs. I can’t help but think that we just got away lightly this time, but what will that liver do next time? And so I talk and demand to be heard, even if they have said it a hundred times before, to a hundred other mothers.

And of course there is also that nagging feeling that something is really not right. Something that they are overlooking and I am just piecing it all together, because after all, I know her best. This “mother’s intuition” is messing with my mind. It has once saved Vega’s life, my insistence that something was not right led to her diagnosis. But over the last years, pretty much everything has felt wrong, and quite frankly was wrong, because giving your child poison on a spoon is unnatural, letting them be used as pin cushion is not nice, taking them for the umpteenth X-ray is not good for them. Almost everything I have done in the last two years went against my mother’s intuition- all because I knew there was something bigger than my intuition, a disease that had to be fought with weapons of mass destruction.

Look at me, a war victim, shell shocked and unable to tell apart the paranoid thoughts from the potentially life saving ones. I often wonder if I will regain that ability in the future. Or whether my intuition has, almost like Vega’s liver, been poisoned one to many times.

3 thoughts on “No more blood please!

  1. I think you are completely right to go on and on to the hospital teams, I feel I talk myself blue in the face about the issues we have with Max. What I always worry about is that they seem to listen while we are admitted in hospital but then as soon as we are discharged its all forgotten about as in their mind Max is then “well” but me and Dave can see the very different Max we now have.
    Of course you don’t want a repeat to what has just happened to Vega! Surely they need to really carefully look into it before giving her more Vinc, especially if they say it was chemotherapy poisoning! Max recently had an increase in his steroids and I can see a difference, instead of being completely depressed, he’s now completely depressed and very angry on them.
    I also struggle with the mother intuition, same as you it was that that got Max diagnosed in the first place but since then everything has felt wrong.
    It’s all so frustrating!!!
    I hope you’ll be out of there for the weekend.
    Eva xxx


  2. stick to your guns Kathi – every child is different and so is Vega. You do know her best, you know her reactions best. I recall what happened when they wanted to give her too much antibiotics and you stopped that and that was the right thing to do. Paranoid thoughts you will have plenty more in life, but I think you do know when the ‘intuition’ is just that. Keep asking to get answers. You will agree to the nasties if they feel needed, you have for 2 years, but that is no reason not to questions. Hope you get to be heard, answered and most of all that Vega is spared such extreme repeats. Lots of love


  3. Finally caught up on your posts this week and am again in awe of all you have to say – and yes have to agree – fight to be heard!!! As exhausting as it is. I think coming to the end of ‘treatment’ does hold so much worry ( i know i experienced both relief, achievement and ‘shit what now’ as i entered a new phase). So i hope you get your voice into those ward-rounds and meetings.

    sending you hugs and more xxxxxxxxxx


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