But what I'm really writing about, is the ...long awaited Maintenance treatment. Particularly in the first 6 weeks of treatment, people talk about this time in the future when things get 'easier' and you get some normality back as your child goes onto maintenance treatment. At that stage you've just been told pretty much the worst news ever & before you have time to take it in you're straight into taking on board a mountain of information, your child is on high dose steroids, having goodness how many drugs, procedures & within a few days becomes someone who is not like your child at all, on top of this you're try to 'deal' with everything including an aggressive, screaming child for 3 weeks in the confines of a hospital ward, so effectively a goldfish bowl! Dr's & Nurses tell you that the first 6-9 months are the hardest...but then your onto maintenance. You feel you'll never get there, its too far away & you sort of don't believe them when they tell you that it'll be a lot better then. "How can it be 'better' my child has Leukaemia???
I'm now being told actually for the parent/s its a very difficult time as its the first time really when things have eased of & you almost get time to process properly what has actually happened. Its also inevitable I feel that you 'think' you're on the last phase, albeit a 17 month phase that I've thought what does happen at the end & various questions.
Well after 38 weeks of treatment over 9 months Charlotte has finally last Wednesday started week 39 of her treatment, which is the 1st week of 73 weeks of maintenance treatment. What is maintenance? Well, basically it consists of an oral chemo drug I have to give EVERY evening of the 73 weeks, an oral chemo drug I give every Thursday evening, an IV chemo drug every 4 weeks which will be administered at Poole Hospital, which will coincide with starting a 5 day course of oral high dose steroids, twice a day at home. Topped off with chemo via a lumbar puncture every 12 weeks at Southampton.
In total Charlotte's treatment is 112 weeks, which takes approximately 2 years & 2 months, during the whole of this she also has Septrin Antibiotics twice a day every weekend. Upto now she has had 16 lumbar punctures (all under Gen Anaesth), 7 Bone Marrow Aspirations (also under GA), 2 blood transfusions, 2 Platelet Transfusions & surgery to fit a hickman/central line in her chest. Next week she has her last Bone Marrow Test (along with another lumbar puncture) until the one she has at the end of all her treatment, they will want to see that after the treatment to date she is still definitely in remission.
During Maintenance Charlotte's blood counts & immune system with still fluctuate somewhat leaving her vulnerable to infection at times, & we will still have to go to hospital any & everytime she is unwell & be admitted if she has an infection. So that's not much normality there then! I long for the day when a sore throat, cough or temperature means a quick trip to the local GP a prescription and home again.
Charlotte's been quite poorly during her last intensive treatment, so its a great feeling to know that hopefully she won't have to go through that again, her hair will grow back & her life will be less disrupted by hospital appointments. I've found the last phase really tough. Sitting in hospital seeing my child so ill from drug side effects, fighting infection & 'forcing' her to have medicines she doesn't want is not nice, and at times like that I resent the Leukaemia , what its doing to Charlotte, what she's having to go through because of it & the affect of it on our lives as mum & daughter.
Now our lives are going to be less dominated by treatment & hospital I really want Charlotte to experience as much normality & kids things as possible. First on the list is to get her into dance lessons which she's desperate to start, she loves the park & beach, so we'll make as much of that as we can as the warmer weather arrives...soo much to look forward to! But to start with its been nice for her to get back into school after half-term & although very tired to start with she seems to be back in her stride now :-)
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| Enjoying some winter sun on the beach! |
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