Still in Hospital

Seth is still in hospital unfortunately. Initially his Temp kept spiking and the hospital policy is to keep them in for 48 hrs after the last high temp. Well he was due to come home last Saturday night but his temp went up and then it was up Sunday and Monday but has been okay since.
The problem now is his blood counts. There are cells in your white blood cells called neutrophils which are there to fight any bacterial infection and Seth basically has none as the chemo treatment has killed them off and as yet they haven't grown back sufficiently. The Doctors are a little concerned as he hasn't had chemo for a few days and his levels should be back up.
Anyway, the short version of the story is they wont let him come home till his counts are at an acceptable level and the poor little guy is going stir crazy and is hooked up to a drip for fluids and antibiotics 24/7. He is starting to get quite moody.
He is in Campbeltown paediatric ward at the moment but they are not as well set up as Westmead, so, if his counts are still down tomorrow they will transfer him and hopefully he will be a little happier. Westmead is also better set up for Parents so Ali will be a little more comfortable as well.
The bed they provide for parents was designed for hobbits I think as even Ali's feet are hanging of the end of it.

Anyway, as a result, his final round of chemo for this phase of his treatment keeps getting put off until his counts improve so hopefully it will happen next monday and hopefully Seth wont be in for to much longer.

I will update you further when I know more.

Hi everyone. Well its been another huge week for us and Seth. The poor little guy was at hospital all day thursday for chemo and a blood and platelet transfusion and then that night he came down with high temperatures and we had to take him back in at around 8pm. He will be in hospital till at least saturday night depending on how he goes with the treatment they are giving him. Initially they have him on a course of antibiotics through his central line and they also have taken blood which they send of to the lab to see if they can grow any nastys on it. If it all comes back clear then he should be right to come home after 48 hours of antibiotics. We had been warned that there could be alot of extra trips into hospital with temperatures etc, but luckily this has been the first time we have had to rush him in at night so far. Anyway if all goes well, he will be back home soon and then we will be back into westmead on monday for another big one, as Seth will need to go on a 6 hour drip which also marks the end of phase 2 of his treatment and then we get a 2 week break with no planned hospital visits. After the 2 week break he will then have another bone marrow test and we will find out what risk catagory he will be in and we are literally holding our breath. Anyway, we will update again soon.

Final week of treatment (for now)

We are now in week four of our four days of chemo for four weeks. Yeah!!! Unfortunately we don't get a home visit tomorrow, but at least we only have to go to Campbelltown for the treatment.
Seth is really flat now, it has really started to knock him down a couple of notches. He still has moments of energy but they are less and less and don't last too long. Still, he is getting out in the sunshine and riding his bike every now and then which is nice to see.
Taylah still has high temperatures, so we are still hoping and praying that he has another little miracle to pull out of his hat. He is suffering a bit with feeling nauseas even on the anti-nausea drugs, but at least he is keeping down the little amounts of food he is eating. His appetite is in complete contradiction to what it was when he was on steroids. He has now lost 3kg's and is almost looking like the boy we started out with. His hair is growing back already, although it is soft and thin.
Today we arrived at hospital at 8:30am for a lumbar puncture and chemo. We left around 3pm for home, so another long day! Everything went well and we have found out that Sienna is a perfect bone marrow match for Seth which is wonderful news. We aren't telling her because she will only stress out that she has to have more needles etc. Hopefully we won't need it, but it is nice to know we have such a close match in case we do.
Seth's red blood cell is very low and his platelets are falling quickly again. Our plan is to have a transfusion of both at Campbelltown on thursday. Well, another big week to get through, and we are thankful for small mercies right now. We are still receiving cards from around the world with messages to uplift and they are much appreciated and at times, much needed. So thank you to those of you who send cards and gifts from around the world (and of course across Australia).
I will update again after Seth's transfusion on thursday, unless something happens before then.

Platelet transfusion

Same old treatment this week. Chemo, Monday - Thursday. This treatment seems to be a little harsher on Seth than the previous chemo drugs. He is more tired, has lost his energy this week, threw up his dinner last night and feels nauseas most of the time. His blood count took a dramatic dive this week and he required a platelet transfusion. This is a pale apricot coloured liquid that is administered via gravity. It only took about 20minutes - which is quite a difference to getting the haemoglobin transfusion which takes around 3 hours. We were lucky enough to be able to get this done at Campbelltown Hospital on Friday morning.
We are looking at the same kind of week next week, however on the Monday Seth will be getting another lumbar puncture.
Taylah is now getting temperatures. She has a urinary tract infection and conjunctivitis. I am hoping that she doesn't get the respiratory tract infection like Sienna had - we can only hope again that Seth will give us another little miracle and not contract Taylah's illnesses.

Week 3 and still going strong - our miracle boy!

Seth went to Westmead again on Monday and fortunately only had to have a blood count done and his dressing over his central line changed. Sienna has been very sick all week with a respiratory tract infection with high temperatures of 39.5 staying with her for the entire time. We were holding our breath just hoping Seth didn't catch it. The doctor warned it was contagious and the nurses believed it was inevitable that he would get it. However, our little guy has sailed through yet another trial and he has not contracted the rti. What a miracle!!! I can only put it down to the many prayers that are being made the world over.
We had our hearts deeply touched this week, with many cards being delivered from the UK and Canada. The most touching and humbling card we received was from an elderly couple from Canada (aged 89 and 84) who went to the trouble of exchanging their money into Australian dollars and hiding it between the card they sent. We were blown away that the news has spread so far and wide and that so many people are keeping track via this blog. So thank you to all who have kept up their prayers and sent their thoughts to us via cards and emails. Those prayers have definitely been put to good use this last week and has given us a little miracle.
Seth had the nurse visit today, we are off to Campbelltown Hospital the next two days and he will more than likely need a platelet transfusion as his platelet count is coming down extremely quickly. Still no news on the tissue typing and the marker. Hopefully next week. Seth is still feeling nauseas on this lot of chemo, which thankfully can be controlled quite well with more medication. He is in high spirits, but hasn't returned to school yet. Hopefully when this intense treatment is over he will return to school for a little while at least.

13 hours too long!

It was a huge day for Seth today, he left home at 6am and got home just before 7pm. Way too long for our little guy to be waiting around. He arrived at hospital at 7:30am and didn't start his procedures until 5 hours later. He had a lumbar puncture with the chemo put into his spinal fluid, then chemo through his central line, then he had three and a half hours of blood transfusions.
We still have no news on the tissue typing (to see whether any of us are compatible bone marrow donors) and still no news on whether Seth has a special marker in his blood which means they can find leukaemia cells in smaller quantities and pick up leukaemia cells earlier.
Seth seems to be responding well to the chemo, he vomited Sunday morning, but has been okay since. He is actually a little bit hyper and we are wondering if it may be related to coming off the steroids. He is slowly losing his chubby cheeks and his stomach is almost back to normal.
Luckily, we have a nurse coming over for a home visit tomorrow, so he can stay home, then we will be heading over to Campbelltown for treatment on Wednesday and Thursday again.