inside Dixiecat
Baby Carl
2008 : October & November
8th oct
Hello i have been unable to update, since my last update, Karl had short stay in hospital with an infection, Karl finished all the delayed intensive had a few weeks off chemo for his blood count to rise and is now on maintenance, daily chemo steroids once a month for 5 days and vincristine chemo once a month, which he is due it all next monday, He also had a lumbar puncture and bonemarrow aspirate last friday.
The community nurse came out monday but his central line would not bleed, for his blood test, so we headed to st marys hospital, where he had a 4 hr infusion to unblock his line, Karls line site was inflamed also so waited to see the doctors to get some iv antibiotics, so we spent 8 and a half hours there in the end, we have been giving Karls iv antibiotics daily at home and will return to st marys hospital friday to see if he can finish his atibiotics or whether he will need more. I will update then x
10th oct 08. Karl has been to st marys hospital and they have said he can finish the antibiotics today.
On monday he has his vincristine and 5 days of steroids, his cold hasn't cleared but he appears very well and happy. x
15th oct, Karl has had his vincristine, and started his steroids which tonight seem to have well and truly kicked in, very grumpy and demanding, only a few days left. His blood count was pretty good monday, and his cold seems to have cleared up at last. Monday the community team will be coming out to take his blood. x
20th oct 08 Karl had his blood taken today and levels are all pretty good at the moment, and since being off the steroids has been absolutely beautiful, and is becoming a little chatterbox. He has been dancing running playing with his brothers, chasing our dog around and just seems to have loads of energy, he's just been such a gem I will take some new pics of his new fluffy hair and huge grin very soon,
He will be going to St Marys hospital monday for a check up with his doctor. I hope you all have a good week and thankyou for all of yr support, Please keep check on little Cerys's group' GET WELL SOON CERYS', She Is due to have her transplant in the next few months and is an amazing little girl. x
23rd oct 08, karl woke up not so happy, just quiet and cuddley, his temp has been creeping and stayed high, so we are at the hospital for a few days of iv antibiotics and to find out what the infection is? May be a water infection, but will see. Iwill keep u posted, x
25th oct 08, Karls lab results all came back clear. So not sure what the infection was, but the antibiotics kicked in quickly and today he's bk to running around, His netrophiles have dipped more, but were allowed home after his ivs at 7.30, His dad will give him his 3am dose then bk to hospital first thing for some more blood to be taken, to see what the infection level is and how his netrophiles are. So i will update when we know tomorrow, thankyou kindly for yr messages being left on the wall.
Karls infection level was 6 , 5 or under is normal. He was given an iv dose of antibiotics, and returned this morning to Hospital where he had another dose. He's alot better but not 100% yet, so please keep him in your thoughts. x
We have the community team coming next monday to take some more blood. So hopefully have some time at home now.
3rd November 08 Karls line appears to be blocked again, so has had some ukaranaise locked into it, which will be left over night, and accessed again in the morning, if it's still not working he will be given a four hour infusion of ukaranaise not sur i spelt that right he he. Karls been really good, he has had an upset stomache, but in himself he is very well. I have got some recent pics i will upload them as soon as i can, maybe tomorrow after our hospital trip. x
4th nov This morning we had a nice surprise when we went to the hospital his line worked perfectly so a short trip, Karl didnt want to be there on arrival he hid under a chair crying for the first 10 minutes before coming out having wiggles seen to, then off for a quick play in the playroom. The playspecialist gave him two halloween balloons which he enjoyed kicking all down the hospital corridors, so a short and sweet visit today, back next tuesday for his chemotherapy dose, and 5 days of steroids. x
11th Nov 08, Hello Karl had his blood count today and has a very good one this week, which is a good job as the day has progressed he has come out with a cold, one of many for the winter i expect, but he should be able to deal with the cold well. Steroids have started and i'm sure he will breeze through this week on them, It's a year tomorrow for Karls diagnosis and it really has been a mixed year for our whole family and friends and those of you following his story. He looks so well at the moment and at times things feel pretty normal, but we were reminded by our oncologist that he may be past the harsh stuff but, it's not all going to be easy. This we know realisticly when his immune system is down, which it has been most of his time so far, infection is a real threat to him and can change at any time, so deep down, yes we know there are risks, but we are pleased he has come so far, and enjoying every moment he is well and things do appear normal. As that is when we can just be a family with all four of our little boys. So lets just pray the nasty infections stay away and keep him at home, as christmas aproaches and we can only hope we get to stay home all together for it. And likewise for little Cerys and her family.
please send positive thoughts prayers and love their way, we value yr support. x
