Nobody knows the trouble I’ve seen

Sorry. I should have blogged earlier. I know you are all worried. I just couldn’t make myself. I left Ray to sleep in the hospital with Vega for two nights and I got some rest at home, cuddling with Alys in bed and having dinner with Lyra. Tonight it is my turn in the hospital again.

So we are still in the hospital. Fevers are still coming, if anything Vega has gotten worse. When she spiked a fever on Sunday night, just hours before we were due to be discharged she was put on “2nd line antibiotics”. When a child on chemotherapy presents in hospital with febrile neutropenia a particular treatment protocol is followed. Last week she received “1st line antibiotics” and as those seemed to have failed she was put on 2nd line on Sunday night. I have pondered about how much of all this medical and medicinal related stuff I should write about on here. I could run the risk to bore you all, or to make you all terribly worried or sad. That is how I am feeling at the moment. I have access to the Internet and I am always looking up all the medication that Vega is receiving, and the moment I do I am regretting it. So I do not want to weigh you all down with the same worry but at the same time I feel so isolated here (not necessarily here as in the hospital but in this situation here kind of way) so worried and I wish I could just let it all out, share with someone all this crap and my worries and get a good old pat on my shoulder and a hug. Therefore I have decided to include a list of her medications and am awaiting virtual pats and hugs, but if you do not wish to worry that much with me then do not read on.

All the antibiotics are broad spectrum antibiotics and they are given to cover a number of possible bacterial infections. 1st line antibiotics are Gentamicin and Tazocin. Vega received these during our first stay at the Marsden just after diagnosis and while we were here at Kings over Easter and the familiar smell of Vega’s wee when she is on it induces worried nausea for me every time I take her to the toilet. 2nd line antibiotics is Vancomycin and Meropenem. Since Vega has started 2nd line antibiotics she has gotten steadily worse. More fevers, higher fevers, more vomiting and more general unwellness. This might not necessarily be due to the antibiotics but just to the fact that an infection of some unidentified cause is raging in her body and has done so for a week now. Vega’s deterioration and the length of this whole ordeal have now caused enough concern for the doctors to start her on antifungals, Ambisome, to be exact. All of these medications have a list of side effects longer than my average weekly shopping list. It is really scary. Well it scares me anyway.

Where was I? Yes antifungals. Children with febrile neutropenia are at high risk of contracting a fungal infection, either in the lungs or in the brain (fungal meningitis), and because Vega’s cultures (blood, pee, poo) are still coming back negative they are running out of options regarding treatment. They just don’t know what to treat so they are covering all bases.
There is a theory which I read about on the Internet today, that fevers during times of severe neutropenia are a safety measure of the body to protect itself against bacteria and viruses. The bodies own defences, the neutrophils are gone and instead the body tries to burn any foreign attackers. Based on this theory, the fevers will only stop when the white blood cells recover and resume their role as the body’s defence system. I like that theory and it sounds plausible to me. Nevertheless, the doctors have to cover for all possibilities, since any infection that stays undetected could hold unthinkable outcomes.
And yet again it seems like the cure is just as dangerous as the disease. Today, on top of the antibiotics, the antifungals, the iv fluids and paracetamol, Vega had to have a chest x ray and an eye exam (ouch stinging eye drops!). This is all part of trying to find a cause for the fevers. Tomorrow she will have a number of ultrasounds to check her liver, spleen, kidneys and intestines for any sign of infection. If fevers are still continuing after that there might be a need for a lung and brain scan. Is your anxiety level rising yet?
The doctors don’t seem to concerned though and assure me that they have one child a month who goes through very similar. As Ray put it on Facebook, it is just bad luck that it is us this month. In 50% of all cases a reason for the fevers is never found. One doctor called that outcome “unsatisfactory” today.
I am sad to see Vega so poorly. And today she was particularly poorly- still throwing up, not eating anything, fevers so high she is shaking and sometimes she is so weak she can barely open her eyes. Tonight she is a little better, like she was last night too. The fever is down, thanks to a dose of paracetamol via iv earlier, and she has eaten some Hula Hoops and yogurt for dinner, the first food she has had all day.

I feel like I am living in a twilight zone at the moment, even when I am not in the hospital. My mood swings from despair to optimism based on Vega’s temperature. I am angry about the fact that I have to entrust Vega’s health to these doctors and nurses and as time goes on I am believing in them less and less. I am altogether quite angry today, with the world really. I hope that Vega will show signs of improvements tomorrow, so far it has just gone more and more downhill. I need a boost!
If that theory is anything to go by, we are here until her white blood cells start to recover. They haven’t moved an inch yet and her neutrophils are literally zero.
I can’t believe this is all happening to us, not this infection, or this hospital stay in particular, but the whole thing. The whole cancer thing. I am sure anyone with cancer, or anyone who sees a loved one go through cancer will feel the same. Even now, nearly four months into treatment I can not quite believe it. Vega is so tough, never complaining, holding out her arms for blood pressure cuffs, tiny fingers for sats machines. Talking about wiggly getting drinks, and acting like a pro in the x ray room because she has done it so many times by now. Her tiny body so full with antibiotics, antifungals, anti everything. Fighting on, getting through day by day. All of this is our reality now. But it wasn’t four months ago. I miss that time.

Life is precious people. It really is. Children teach it to us every day. And Vega more than anyone right now.

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8 thoughts on “Nobody knows the trouble I’ve seen

  1. Oh my love – I so wish I didn’t understand something of your worries and all those meds – that you didn’t have to go through all this and feel so desperately shite and that all these regimes weren’t your reality. It is so hard to be in doctors/nurses hands – but i am grateful that you can share your feelings here and am sending you a huge warm hug. you must be exhausted – I know you are and hope you can find some peace right now to face the next hour – moment by moment. Much love to you and Vega bear – willing with all that i have that the infection abates and her neutrophils pick up xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

  2. Here is your pat & your hug. A bear hug. We definitely want to read and understand what you are going through, no one wants you to feel so alone through all this. It is terrifying. And watching your child suffer while these people in white coats who are supposed to know all the answers struggle to find a solution is simply awful. But she WILL get through it. her fever will come down, her neutrophills pick up, and you both will get to come home very soon. much love, Damaris xxxxxxx

  3. Nobody should have to see their child so poorly or go through this illness. It’s just not right or fair! But Vega is coping incredibly and so are the rest of you. What you are going through has made me realise that I have NO right to moan about the little, insignificant things anymore. I am sending you our thoughts and our love. I so desperately want to see you guys but now I have a sore throat and I feel bad that we cannot be around more often to offer support but we are here virtually or on the phone anytime you need us. If we can help (absolutely anything), please let us know. We are going through this with you … sharing the same worries, tears etc. Please give Vega, Lyra and Alys a massive hug from us. I am wishing for that morning when Vega will wake up and be fever/infection free to come very soon.

  4. Huge hugs and gentle warm pats on the shoulder. My father in law has cancer, been living with it for 10 yrs and the worst thing is it is actually the (aggressive, consuming, exhausting, toxic, sick inducing) medicine that makes the person ill. At any point when deciding on a new regime he faces the knowledge of living through a few months of this debilitating hell to get better. Vega is incredible and reminder of how much us adults moan about silly little things. What a star! We all backing you, willing you to come out soon and get home. C’mon white cells!!!! xxxx Anger is allowed and a completely appropriate response to the outrageous situation you find yourselves in xxxxxx

  5. Liebe Kathi,
    es ist furchtbar, es ist traurig, was euch allen passiert. Bei deinem Bericht habe ich verdammt hart schlucken müssen und ich stelle mir dieselben Fragen. Warum passiert das alles? Wie kann es sein, dass vor ein paar Monaten die Welt noch in Ordnung war und sich jetzt alles um ein heilloses Durcheinander aus Medikamenten besteht und sich einer enormen Müdigkeit, Traurigkeit und Wut stellen muss und mit jedem neuen Fieberschub der vorher gegangen Funken Hoffnung verpufft. Und die Antwort lässt auf sich warten… und kommt einfach nicht und die Wut steigt. Und wenn man sieht, wie diese Prozedur so ein kleines Geschöpf noch weiter schwächt, ist einem nur nach Heulen zumute und dabei bin ich “weit weg” von eurem Geschehen.
    Mein Kommentar hilft dir natürlich nicht, gleichzeitg fühle ich mich beim Schreiben auch ein wenig lächerlich, da ich eben nur mit meinen kleinen Problem zu kämpfen habe und ich nicht weiß, wie ich die Gefühle, die ich hege am besten zum Ausdruck bringen kann.
    Oder irgendwem, irgendwie helfen kann… jemand dem es doch eigentlich gut geht, fällt es auch schwer, die richtigen Worte zu finden, an euch zu denken.
    Klingt bescheuert, am besten höre ich mal an diesem Punkt auf.
    Gefühle die auch aus allem bestehen: Wut, Trauer, Fassungslosigkeit… aber allen voran Bewunderung. Bewunderung über deinen Mut, darüber zu sprechen, sich eben nicht zu isolieren (auch wenn du dich so fühlst) und deine Disziplin, alles so genau zu dokumentieren, dich der Welt mitzuteilen. Da gehört so viel Kraft, Liebe und Mut dazu und das zeichnet dich und deine Familie aus. Und allen voran eurer kleinen Maus.
    Ich muss gestehen, ich erzähle so vielen Menschen von dir und deiner kleinen Vega, habe mich über Leukämie und Blut- und Knochenmarksspenden informiert und verteile Informationen darüber im Freundes- und Arbeitskreis. Und die Anteilnahme ist so groß, so unglaublich groß und herzlich für dich und deine Lieben. Es sind völlig fremde Menschen und auch ich bin eher ein Läufer am Rande deines Lebens… aber wir denken alle an euch und hoffen mit jedem Tag, dass es aufwärts geht.
    Ich hoffe, die Umarmung ist doch irgendwie spürbar…
    Cora

  6. A special and spacial hug and positive energy to you and Vega Bear (i like that so much!!), i hope very soon you are out of the woods. And keep these words coming, writing is a great way to let it all out and for us to read them and feel that we are a bit closer to you. lots of love and strength, nobody deserves it.

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