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.

A day of treatment at home!!

We had the nurse come and visit us at home today. Seth has taken well to the chemo again so far. He has just had some nausea, but the meds to combat that are working well. We are off to Campbelltown Hospital for the next two days for treatment which is a nice change from going to Westmead all the time. We have uploaded some photos to view including the buddah shot.

Big Day Today

A very long day for Seth today, he was hooked up to a drip for 6 hours as part of his chemo. He did really well and was very patient. We left home at 7:15am and arrived back home 11 hours later. He didn't complain once.
He has a very intensive 4 weeks of chemo ahead of him - 4 days of chemo a week for 4 weeks via the central line and a chemo tablet every day. Luckily, we can get some of his treatment at Campbelltown Hospital which will save us a lot of time and a lot of petrol.
A couple of Bulldogs came for a visit to the clinic promoting Camp Quality today. Seth was very quick to tell them he was a Dragons supporter and Brett had a nice time promoting the Dragons.
Seth is starting to lose those gorgeous chubby cheeks and that big fat tummy since being off the steroids. It is happening quite quickly and his appetite is finally decreasing with it as well. We have some great shots of him at his biggest to upload. He looks like a little buddah.
He is now having new chemotherapy drugs so we aren't sure how he will react with these. One of the drugs has a tendency to cause fevers, so we will be on the lookout for them as we have to get him to hospital within the hour. Another can cause bleeding from the bladder. Hopefully, we sail through these next four weeks without too much drama.
We are still waiting the results of the tissue typing to see whether any of us are bone marrow matches. We got a call about some information they were missing today, so I know they are working on it and we should hear the results by next week.

We begin the next stages of chemo.

I have spoken to our oncology nurse that takes care of all the oncology kids who are outpatients. She has contacted Seth's oncologist on our behalf and has found out some answers for me. Seth will begin his next stage of chemo on Monday. They would be making the same decision whether he was in remission or not in remission. The small amount of cells they did collect from the marrow, although still too small to give us a definite all clear, shows no signs of Leukaemia. Phew...
The nurse (Daphne) met me at Campbelltown Hospital today to introduce us to the Pac's team there. They are some wonderful nurses and I am just so relieved to be able to get some of the treatments there rather than have the big commute to Westmead all the time.
Campbelltown Hospital has liased with Westmead and have all of Seth's information now, so we are able to get blood counts, blood transfusions and some of the more minor chemo's at Campbelltown. If Seth get's a temperature, we are now able to take him to Campbelltown where they can begin treatment within the hour (which is important), rather than us getting him to Westmead which takes longer than an hour to get to. If he requires more treatment, they will then transport him to Westmead from there.
This is a huge relief and a big help as his next stage of chemo is a 4 day treatment. We begin Monday at Westmead for a 6 hour drip which Campbelltown aren't authorised to give him, Tuesday they send a nurse to our house, Wednesday and Thursday, I take him to Campbelltown for them to give the chemo. Then we start all over again the following Monday along with a Lumbar Puncture. This treatment goes for 4 weeks. Then we will be getting close to day 79 and we will be getting his prognosis.
Seth went to school for the first time today for 1 and a half hours. The nurses had been out to educate the teachers and his class and I got a call on Thursday advising me it was now time to send him back to school. We had tears in the morning as he was worried about how different he looked and about the kids in the playground being rough with him. So, we made a deal, I stayed in the car with him till the bell rang, then I walked him to his class once everyone was out of the playground. He came out of school loving it and wanted to go back tomorrow. I had to disappoint him with the news that it was Saturday tomorrow. It is a bit scary sending him out with all the germs that float around schools, but they reckon it is the right thing to do. I just hope it does him more good than harm. So, I will hold my breath again and hope he doesn't pick up anything harmful. We are to take it a day at a time and if he is feeling well, we send him for a couple of hours so he keeps contact with his class and keeps up with his school work.
We will keep you posted as to how we go with Monday's treatment. These particular chemo's have a tendency to induce a fever, so fingers crossed he comes through them okay.