Seth is doing really well so far. Things are running very smoothly, better in fact than what I or the doctors thought they would. Seth has had a couple low grade temps, was put on antibiotics which did the trick in a couple days. He has vomited a few times here and there. Last night was really the only drama that we've had and it turns out it was nothing serious just a reaction to a drug. Around 8pm last night Seth's heart rate dropped to 45 - 60 beats a minute which meant that the nurses had to call a rapid response team from ICU. He was sitting up. feeling totally normal, just a little tired. They monitored his heart all night, watched his blood pressure every 15 minutes, did an ECG and in the end couldn't find any reason for the drop. By about 6:30am his heart rate returned to normal. What they believe happened was that Seth was given a blood product called Intragram earlier in the day and he had a slight reaction to it (he has had this product about 4 times in the past with no reaction before). The reaction was a blotchy rash covering his chest, stomach and back. His ears, hands and face became flushed as well. To prevent any further reaction they gave him an antihistamine and a steroid. It's this steroid that they believe caused the slowing heart rate.
Seth has required platelet and blood transfusions as his counts are dropping quickly still. His hair is starting to come out today due to the radiation treatment. He had a bleeding nose yesterday probably from the mucositis and couldn't be stopped until they topped up his platelets. It was only a very slow bleed but just annoyingly dribbling for half the day.
Seth is on a low dose of morphine for pain related to mucositis. He has the ability to push a button for a top up but so far has only pushed it about 3 times in the week. His mouth sores are nearly non existent which is a huge surprise. This is one of the major problems kids have with transplant, caused by radiation and the huge chemo dose. His mucositis is very minor, considering how bad he has had it in the past from just chemo. Seth is just full of surprises - nice ones.
Seth is in good spirits for the most part. He had a good cry yesterday but picked himself up, dusted himself off and was smiling again in no time. He is so well in fact that he is participating in school lessons and music lessons. We are playing games galore and he is still up late at night without even a nap in the day. Very, very unusual for bmt patients who normally sleep the days away.
The doctors are really pleased with how well he is going. In their words "Every now and then, we get a kid that comes along and surprises us, Seth is one of those kids".
Hopefully he continues along this path for the remainder of his treatment.
Sienna is doing really well. She went back to school on Friday and was sorely missed by her friends so we were told. She had news yesterday and took in her bone marrow label and told the class all about her hospital experience. She told me the class had about 500 questions about the bone marrow, to her great delight. She has cashed in on her donation with a shopping trip and a movie funded and escorted by her father. I can just see that in about 8 years time she will be hitting Seth up for taxi services still using the fact that she gave him her bone marrow as to the reason he owes her! I can't wait to hear those fights. It will be music to my ears.
Seth
Thursday, August 30, 2012
Wednesday, August 22, 2012
Day after
Firstly I would like to thank everyone for all their kind words, thoughts and prayers. It is such a blessing to have so many people caring about Seth and our family. It is truly humbling.
Yesterday went better than could be expected. Brett arrived with girls in tow around 7:45am and I immediately took her up to day surgery. The team there took her through very quickly so there was not much waiting around. Sienna was her usual smiley, happy self and had all the doctors and nurses wrapped around her fingers by the time we walked down to theatres. Once we entered the prep room the dramas began. She wrapped her arms around my neck like a vice and nobody could pry her off. She started crying and saying she had changed her mind and didn't want to do it now. To save my back and neck from bending over the bed the nurses got me a chair and I held Sienna on my lap. Then it was time for the mask and she wouldn't let them put it on her. She wanted them to do it to me so on with the happy gas I went and started giggling away in the hopes she would think it was fun. She did think it was funny as long as it stayed on me! Eventually she allowed me to put it over her face and we were doing really well until they changed the gas over. She screamed like someone was stabbing her in the heart and threw the mask across the room. I thought she was having some kind of allergic reaction but it turned out it was the dizziness that freaked her out. Eventually she settled down again and they readied her for the change in gas and talked her through by asking questions about her puppy dog. Then she was fast asleep and whisked away. I left feeling a bit shaken. I knew it would be difficult but it broke my heart to put my healthy, well, child through pain and fear. The whole procedure took about an hour and the doctors were really pleased with the amount they were able to harvest. She woke with a bit of pain which was controlled with local anaesthetic and oxycodone. She took a bit to wake up but once properly awake she was well enough to be discharged and we were back in Seth's room by about 1pm. She was showered with praise and hugs and gifts when she arrived by grandparents and her sister. Seth was a little bit tired and watched the action quietly from his bed. The report from home today is that she is talking non stop about yesterday and apart from a bit of pain is doing really well. The bandages come off tomorrow so we will see how bad the bruising is then.
The marrow arrived at the room by about 1:30 - 2pm and I was glad that Sienna was able to see it go through. It was dark red and had both girls swooning from the look of it dripping into his line. The whole thing took about half an hour to happen. There was no bad reactions, nothing dramatic happened and everything went smoothly. Seth was a little tired and just rested through the transplant. Sienna has now done her job and the rest is up to Seth. Today he has a small amount of chemo which is really only used to suppress his immune system further to prevent any reactions he may have to the marrow. It isn't enough to kill off the new cells given to him. He is doing really well at the moment and is doing a small maths lesson as I type this. He is having stomach pain and nausea which they are controlling with drugs.
What is expected to happen in the coming weeks is many temps due to the lack of immune system. They expect his counts to completely bottom out and in about 3 weeks Siennas marrow should take hold and begin to grow. When this happens, he will experience something called graft versus host disease and any number of things can happen there. This is when Seth's cells and Sienna's cells start to battle each other. Much the same as if he had an organ transplant and the body started to reject it. The immune suppression drugs will help control this reaction, but they encourage a small amount to occur as Sienna's marrow will fight any cancer cells that may be lurking. Seth will also need many transfusions as he is not making any blood or platelets. His blood group will also change to Sienna's sometime along the way as well.
Seth During Radiation
Sienna Post Op
Sienna and Seth after the transplant
Siennas Harvested and treated Marrow
Transplant in progress
Seth Over the excitement and attention
and just wanting some sleep
Seth and Sienna spending some quality time
before the months of isolation begin.
Yesterday went better than could be expected. Brett arrived with girls in tow around 7:45am and I immediately took her up to day surgery. The team there took her through very quickly so there was not much waiting around. Sienna was her usual smiley, happy self and had all the doctors and nurses wrapped around her fingers by the time we walked down to theatres. Once we entered the prep room the dramas began. She wrapped her arms around my neck like a vice and nobody could pry her off. She started crying and saying she had changed her mind and didn't want to do it now. To save my back and neck from bending over the bed the nurses got me a chair and I held Sienna on my lap. Then it was time for the mask and she wouldn't let them put it on her. She wanted them to do it to me so on with the happy gas I went and started giggling away in the hopes she would think it was fun. She did think it was funny as long as it stayed on me! Eventually she allowed me to put it over her face and we were doing really well until they changed the gas over. She screamed like someone was stabbing her in the heart and threw the mask across the room. I thought she was having some kind of allergic reaction but it turned out it was the dizziness that freaked her out. Eventually she settled down again and they readied her for the change in gas and talked her through by asking questions about her puppy dog. Then she was fast asleep and whisked away. I left feeling a bit shaken. I knew it would be difficult but it broke my heart to put my healthy, well, child through pain and fear. The whole procedure took about an hour and the doctors were really pleased with the amount they were able to harvest. She woke with a bit of pain which was controlled with local anaesthetic and oxycodone. She took a bit to wake up but once properly awake she was well enough to be discharged and we were back in Seth's room by about 1pm. She was showered with praise and hugs and gifts when she arrived by grandparents and her sister. Seth was a little bit tired and watched the action quietly from his bed. The report from home today is that she is talking non stop about yesterday and apart from a bit of pain is doing really well. The bandages come off tomorrow so we will see how bad the bruising is then.
The marrow arrived at the room by about 1:30 - 2pm and I was glad that Sienna was able to see it go through. It was dark red and had both girls swooning from the look of it dripping into his line. The whole thing took about half an hour to happen. There was no bad reactions, nothing dramatic happened and everything went smoothly. Seth was a little tired and just rested through the transplant. Sienna has now done her job and the rest is up to Seth. Today he has a small amount of chemo which is really only used to suppress his immune system further to prevent any reactions he may have to the marrow. It isn't enough to kill off the new cells given to him. He is doing really well at the moment and is doing a small maths lesson as I type this. He is having stomach pain and nausea which they are controlling with drugs.
What is expected to happen in the coming weeks is many temps due to the lack of immune system. They expect his counts to completely bottom out and in about 3 weeks Siennas marrow should take hold and begin to grow. When this happens, he will experience something called graft versus host disease and any number of things can happen there. This is when Seth's cells and Sienna's cells start to battle each other. Much the same as if he had an organ transplant and the body started to reject it. The immune suppression drugs will help control this reaction, but they encourage a small amount to occur as Sienna's marrow will fight any cancer cells that may be lurking. Seth will also need many transfusions as he is not making any blood or platelets. His blood group will also change to Sienna's sometime along the way as well.
and just wanting some sleep
before the months of isolation begin.
Monday, August 20, 2012
Radiation over with and transplant tomorrow
We arrived at hospital last Tuesday for admission. Sienna was required to come along just for a check up. We managed to get settled into our room by around 5:30pm. The following day Seth began radiation. It was an early start at the adults hospital were he was laid down in what resembles a Perspex fish tank with the ends missing. They then put sensors over his body to measure the amount of radiation he was about to receive. They then added sand bags around his shoulders and chocked him up with foam blocks to help keep him motionless. Once this was done, they lined him up with the beam and put another Perspex tank next to him. This tank had Perspex blocks of different thickness wedged in alongside each other. This is what the measuring was all about earlier in the year. The purpose of this is so that each part of his body regardless of the size gets the same amount of radiation. Once he was settled with a DVD playing we moved out of the room and watched him on a little monitor. They had one person at all times watching him for any movements. If he moved too much they turned off the beam. All in all if he laid fairly still it would take about 10 minutes for one side. They then stopped, went in and turned the tank around so the other side of his body caught the beam and they started again for another 10 minutes. Seth had to do this routine twice a day for 3 days straight. Seth suffered from nausea, tiredness, leg pain, an aching jaw and itchy skin. He was dosed up on pain meds and anti nausea drugs so it was bearable for him and he got through all six in remarkably good shape. This took us through to Friday and then Saturday he was given some very strong chemotherapy called Etoposide which went through in four hours. By the end of the infusion he was feeling quite nauseas and looked awful. Once again they just upped his anti nausea drugs and he picked up again. Sunday they started him on a 24 hour infusion of an antirejection drug. Which is still going through right now. He had a bad night last night with vomiting and diarrhea and is quite tired today. He has stopped eating most things now and is very reliant on his feeding tube to keep his nutrition up. He is in a positive mood and is in good spirits for the most part. He is sewing a cushion, playing games, listening to stories, watching movies and even participating in school lessons. I have been really surprised at how well he has remained throughout some of the worst treatments possible. The radiation as I understand it has now killed off his body's ability to make new bone marrow cells. It has killed off cells where chemo can't reach. The chemo he had after radiation was to clear out whatever cells were remaining in his marrow. The anti rejection drug called cyclosporine is now suppressing his immune system so that he won't reject Siennas bone marrow. He is now officially incapable of fighting off any kind of sickness. He has no cells to fight and what little fight he has left has been suppressed.
Tomorrow is the big day and Sienna is starting to get really nervous. She talks alot when she is nervous about what is going to happen. She told me last night on the phone that she was feeling scared. She has been kept home from school all week just to keep her safe from catching anything as she too had caught a cold. Sienna is required to come in very early tomorrow to get things underway. The marrow will need to stay in the lab a bit longer as they are different blood types so they want Sienna to be done first thing. Seth will receive the cells by the afternoon.
Seth has a rest day today which basically means that he doesn't get any chemo. He seems well prepared for tomorrow and just glad it has finally come as am I.
Taylah will be joining us tomorrow at the hospital as we don't want her worrying all day at school. She will be able to spend time with Seth beforehand and we don't want her to feel left out of what is a big event for our family. She has been much happier since we made the decision to have her with us at transplant and I feel it was the right choice to make. I will update again after Tuesday is over with.
Tomorrow is the big day and Sienna is starting to get really nervous. She talks alot when she is nervous about what is going to happen. She told me last night on the phone that she was feeling scared. She has been kept home from school all week just to keep her safe from catching anything as she too had caught a cold. Sienna is required to come in very early tomorrow to get things underway. The marrow will need to stay in the lab a bit longer as they are different blood types so they want Sienna to be done first thing. Seth will receive the cells by the afternoon.
Seth has a rest day today which basically means that he doesn't get any chemo. He seems well prepared for tomorrow and just glad it has finally come as am I.
Taylah will be joining us tomorrow at the hospital as we don't want her worrying all day at school. She will be able to spend time with Seth beforehand and we don't want her to feel left out of what is a big event for our family. She has been much happier since we made the decision to have her with us at transplant and I feel it was the right choice to make. I will update again after Tuesday is over with.
Wednesday, August 8, 2012
New Plans
For those that don't already know, unfortunately Seth developed a cold the morning that he was going to be admitted for radiation and his bone marrow transplant. We rang the hospital and were told to bring Seth in for them to do some testing, but they would not be admitting him. Seth was quite upset because in his words "I just want this over and done with". I was upset myself as it took alot of effort to get into the right head space and having one more thing go wrong was just too much. We were called in to hospital today (wednesday) by an early phone call from the bone marrow team. They wanted Sienna in for another blood test because by law the blood tests have to be done within a month of transplant. I have to share a funny moment. The nurse asked Sienna what is her birth date and she said "this year". They also wanted to examine Seth again. The good news is that he has a simple cold, nothing sinister, and they are happy to go ahead with radiation which they have booked in for Wednesday. So we will now be admitted next Tuesday, radiation begins the following day and I am unsure of the day for transplant at this stage. It will more than likely be either the following Monday or Wednesday. The results for his bone marrow aspirate are encouraging as they are still negative and that is what they need to continue to transplant.
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