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Asante's journey

  • Phewww!!

      14 July 2015

    Well, almost immediately after I posted the first update, Asante developed a cough literally the next day and after daily hospital visits for 5 days he was admitted to Rotorua hospital with a fever. He required a blood and platelet transfusion as expected anyway, due to the the intense chemotherapy in this round. I took Asante in thinking we would be in for maybe a night or two due to a cold.

    However, after 2 weeks in Rotorua and then Starship hospital Asante managed to fight his way out of pneumonia! Non stop fevers for 10 days, vomiting and no desire for food, he managed to pull through with the thanks to all the Doctors and nurses who provided him with all the care and medicines, chest xrays - 3 x blood transfusions and 4 x platelet transfusions and one surgery to flush out the mucus in his lungs. He required full time oxygen for several days and thanks to a lack of appetite he was provided with a nasal gastric tube to get some nutrition. He managed to boost his weight back up to 20 kgs. Among other things, this was all over a 2 week period. Bonus was that he was given his 2nd trip on a rescue chopper - thank you Tauranga Rescue Service - from Rotorua to Starship. We thought we would be transferred by ambulance initially but were upgraded to Chopper. I made sure I was awake this time and it was a stunning flight up - at sunset. Again great people, great care and great support.

    It was reassuring in an odd way to be back at Starship during all this, because it was comforting to be in our 2nd home. They know us - well by us I mean Asante - so well now.

    He has battled his way - like so many other beautiful strong children - through 6 months of treatment now. And this episode just goes to show that it really is one day at a time. Although these 2 weeks in hospital were really one hour at a time and I really dont want to have to relive that. Nothing hurts more than not being able to fix your own child and having to watch them with tubes all over the show, looking grey and not wanting to talk to you, their mother is hideous. Having to relinquish what little control over your child to the doctors is becoming easier though. Afterall, these are the people who are keeping my son alive and helping him fight this hideous battle.

    Overall, this 2 week fiasco has brought me down a peg or two - perhaps I was getting a little cocky with the optimism and a few doses of reality was perhaps in order. So, the reality is, Asante is a fighter, he is as the Doctors warned me prone to ups and downs but no matter what he is doing well. We are 6 months in and he is still smiling, still fighting and I am eternally grateful for this chance he has at fighting this. Some kids dont get the chance. So I am extra cautious but still optimistic. No choice but to be so. So grateful we are through the worst, most intense stage of his treatment. Fingers crossed it remains that way. So phew, here is to the next 8 weeks of treatment - every 10 days - not as intense but at the end of this 8 weeks fingers crossed, he will be out of the worst phase and beginning of maintenance - full remission. And then monthly chemo for 3 years! We can do this :)

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  • 5 months on - Cautiously Optimistic

      16 June 2015

    Suddenly we are 5.5 months into treatment. The first 3 months were quite possibly the longest 3 months ever and somehow we have made it to June now. Asante is now near the end of the 8 week stage called Delayed Intensification which is basically 8 weeks of intense chemotherapy via his port, lumbar punctures, injections and IV. During this stage he is expected to become neutropenic which will mean he have very low white blood cells/neutrophils which are the cells used /needed to fight bacteria and infections. He blood counts will drop and could possibly drop so low that he will need further blood transfusions. And it is also the most dangerous time for him in general. He has just finished his 2nd lot of 4 daily chemo injections and he now has a 2 week break before further treatment. So that is a breath of fresh air. He will still be monitored in this time, and particularly so because we discovered he was exposed to chicken pox the last time we were at Starship. So he is now in isolation at home and we can not go to Starship until he is out of the incubation period which is July 2nd. But so far so good - no signs of chicken pox as yet. Had a little scare today and took him for a check up due to a cough, runny nose and a rash on his chest and back last night. But the rash has since cleared and Docs are happy its not chicken pox (at stage at least).

    Asante throughout this 5.5 month journey has been AMAZING. He continues to be his strong, resilient self despite a few ups and downs along the way. He has his Northern School teacher who visits us at the house 1-2 x a week for his lessons and keeps his mind busy. Sometimes he doesn't feel like talking, or is too nauseous etc so we don't always see the teacher. But for the most part, this little boy keeps calm and carries on :) He never complains, takes his pills, puts up with the pinpricks, the vomiting, the mood swings (caused by steroids) and poking and prodding along the way. He isn't a fan of anesthetic and in fact it upsets him as he hates the cold, tingly feeling as it goes in his system, but the actual theatre itself he is unbelievably fine with. I cant remember now how many lumbar punctures he has had now. But he is truly a super trooper. He is teaching me so much. A lot of that is my own courage and bravery. He is much much stronger than me :)

    So we have 2 more weeks of delayed intensification (the worst stage) before moving onto 8 weeks of Interim Maintenance which is more chemo and lumbar punctures but not as much and not as frequently I believe. After the next 10-12 weeks, all going well, no illnesses or mishaps along the way the doctors are keen for Asante to start school in October! Part time but at least he gets to actually start school and make some friends! Yayy! Light at the end of this hideous tunnel. So, that is our long term goal, while our short term goal remains at getting it through the day, one day at a time.

    Almost 6 months of treatment completed, he is on track, he is doing remarkably well physically and emotionally overall (despite the odd doozy as you would expect). And 3 years of treatment to go!

    Asante's little BFF and sister is doing very well too. After a couple of months not understanding what was going on and why her mother and brother were living in Auckland not home with her she has learnt to adapt nicely. It does help that we were able to come home and when she learnt that while we had to leave her behind with Nana every Sunday she finally learnt that by Tuesday or Wednesday she would see us again. So for a 3 yr old little girl she has also had to make some adjustments. She is very happy at Topkids Daycare and that is the best thing for her to keep her in her little routine where she is happy and safe and surrounded by her little friends. I try to take her with us once in a while so she doesn't feel like she is missing out all the time, and she really loves to come to the hospital to see "Asante's doctor". A great wee supporter. Juggling the attention between the two is hard at times but it gets easier somehow. The main thing is that she is also doing very well and quite happy now.

    I would like to thank you all personally SO VERY VERY MUCH for your kindness, your support and your generosity. It is incredibly humbling and heartfelt and I will never ever forget your kindness. Please know that your generosity has touched our hearts and it is truly very much appreciated. I would also like to thank you all and Caroline Slight again for thinking ahead when I couldn't. My mind has really only just starting thinking clearly the last couple of months. It never occurred to me that I would have to leave my job, and the impact that would have on our little family of 3. So thank you for your foresight :)

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