Hi All,
well it has been a rough week. I have been so swollen and in extreme pain. I have upped my pain relief with the surgeon's knowledge and it has helped greatly but I can't walk around or sit. I have to be laid back in a chair, or lying down otherwise the pressure and pain are just too much.
Tomorrow I will see my gynae to check the site. She is worried that there could be some wound break down because of how bad the swelling it. I have had a little blood loss but it is only a tiny bit. Some could be left over from my period anyway.
I got some path results. They have removed all the pre-cancerous cells......in fact, what they took out showed no pre-cancerous cells or cancer. SO now there is most definitely a clear margin. They took 4 biopsies and one or two of them showed viral changes. We are looking into this at the moment.
I also got the results back from my head biopsy a few weeks ago which I forgot about. That too was a pre-cancerous lesion type thing on my head and it is my understanding that they cut it all out with the biopsy. SO......that was on the other side from the head cancer I had last year. Luckily I was being cautious hey! I wear a hat all the time now. Even in winter, I wear the beanies when outside. I never used to be stupid in the sun but I suppose there may have been times when I didn't wear a hat. With FA, I am discovering that you just can't take any chances. I have worn hats as long as I can remember so may be it was when I was younger. It scares me though!
Ok, I have to endure a shower....ouch! I have a haem/oncol appointment this afternoon.
Love Charisse
Showing posts with label post surgery. Show all posts
Showing posts with label post surgery. Show all posts
Tuesday, July 28, 2009
Sunday, July 26, 2009
Post Surgery
Hello People,
I got home this afternoon. I had the gynae surgery on Friday. They re-excised where the cancer was to get a clearer margin with the pre-cancerous cells. They also did a vulvoscopy and puncture biopsied 4 other places.
I discovered that my platelets had done a drop before the surgery due to me having a flu type bug 4 weeks before. I did have signs of this and was worried so I had the appropriate platelet support, especially since this surgery was going to be quite a wide incision with biopsies.
6 weeks ago when I had the original cancer cut out I had hardly any pain and was just in for the day. I also experienced no bruising at all last time. This time was different. I have some bruising and a wider cut plus 4 biopsies. They injected adrenaline into the wound which made me swell very badly. The adrenaline was to constrict the blood vessels to help decrease any bleeding. They also injected heaps of local so when I woke I wasn't too bad with pain. The surgeon said that I didn't bleed bad with the cutting but when they went to stitch me up, I started to bleed with the stitches being pulled through.....so not bad when cutting but sensitive while stitching....... However, I still didn't bleed too much and had very minimal ooze following the surgery. In fact, VERY minimal. I was told that I was bleeding like someone who had normal platelet count. However, obviously they still are very careful because my count is generally lower and a low neutrophil count can make bleeding and healing more of an issue. My neutrophils were still normal for me but low for someone who is normal. I had IV antibiotics given while in surgery.
I am sure you will love this info but it is actually that time of the month for me so it has been hard to tell where bleeding is coming from but we are pretty most certain that it is not coming from the incisions. As I mentioned before, the surgeon is really happy with me and continues to marvel with how well my body copes with surgery.
They gave me a good amount of pain relief in recovery but because the incision had local anaesthetic all injected in and around it, it wasn't all that bad. I was thinking how it didn't hurt much for being a wide incision and was quite bright when I woke up. I continued to feel bright down on the ward and was up and about to the bathroom and so on. I had some visitors! Thanks for coming to see me Mum, Denise and Alex, Darren and Angela and for the phone calls from my sister, a work mate and sms's from many people :-) Much appreciated. It all helped keep my spirits high :-) I appreciate the people who rang and couldn't come and see me because they were sick like dad.
However, that night, when the local anaesthetic wore off, boy was I in heaps of pain! It was crazy! I was so surprised! I was surprised because last time I had hardly any pain and went home the same day. Of course, I had to keep reminding myself I had more done this time. Alan oftens stays overnight with me when I have things done but this time he was going home to be with Isaac. Mum took Isaac and bed him down at her house until Alan was ready to pick him up later. Due to my distress, Alan didn't leave me til 11pm. I was just quite distressed and sore. Isaac has been sick so Alan needed to go to him. So Alan spoke to the night nurse about my anxiety and he went to get Isaac.
The pain just got out of control from there on. I ended up having 2 injections of fentanyl and panadeine forte and at some point I also had a good amount of tramadol. In the end, as it got closer to 2.20am, the night nurse came in my room, while I was still crying, and stroked my head and hand. She held my hand and I eventually fell asleep. I thought that was so sweet of the nurse. I got so distressed. I was so drugged up and had also had IVIG infusion after the surgery. IVIG infusion changes my perception as well and I don't cope emotionally as well as I do without it. I was panicked about everything, including dying from FA and pre-leukaemia and cancers and low platelets and all sorts. I remember raving on and on while the nurse stroked my head and hand! I was distressed. I take my hat off to her for being so quiet and controlled and reassuring!
Anyway, I didn't end up going home the next day due to needing more pain relief. I just rested. I had a better night's sleep the second night and managed without the fentanyl injections. I am still very sore but have managed to come home. I think recovery will take a little longer from this surgery than 6 weeks ago. Please pray my marrow recovers ok from the flu bug a few weeks ago. That always worries me.
I will find out the pathology results from the surgery and biopsies on Tuesday. Please pray that will be ok.
Pray that I don't feel too bad from the IVIG as well. On Wednesday I find out my bone marrow biopsy results as well. That is always such a huge, emotional thing.
Did I tell you all that Alan has now got a new job??? He has had one for 2 weeks with a paving franchise. He does like site management or something. Administration.....his brother is expanding his business and needed someone to take a certain position and Alan got it. Alan works 3 days a week like he was before in business management. Alan also got into university and this week was his first week doing his Bachelor of Environmental Science. He is doing external study full time. So it looks like things are looking up for us in the job area.
Oh, yes! Our house is now under contract! We got an offer on our house and the call off period has finished. Finally, we are selling our house! Praise the Lord! Things are coming under control :-)
Anyway, pray for Isaac and Alan. Isaac has been unwell with a fever, cough, runny nose, not much appetite and very flat. He is now on antibiotics but it is always a worry if I catch what he has, especially since my marrow is a bit suppressed...more than usual right now! Alan is not feeling well either. He is feeling flat and coughing a bit as well. I just cannot catch this right now! Pray for protection! Also, it is not nice to see them both sick :-(
I have some time off work while I get better.
Ok, that's all for my update! Thanks for supporting me and encouraging me. Will post again soon. I have some school holiday updates that I want to do....pictures etc. I haven't gotten around to it yet.
Lots of love,
Charisse
I got home this afternoon. I had the gynae surgery on Friday. They re-excised where the cancer was to get a clearer margin with the pre-cancerous cells. They also did a vulvoscopy and puncture biopsied 4 other places.
I discovered that my platelets had done a drop before the surgery due to me having a flu type bug 4 weeks before. I did have signs of this and was worried so I had the appropriate platelet support, especially since this surgery was going to be quite a wide incision with biopsies.
6 weeks ago when I had the original cancer cut out I had hardly any pain and was just in for the day. I also experienced no bruising at all last time. This time was different. I have some bruising and a wider cut plus 4 biopsies. They injected adrenaline into the wound which made me swell very badly. The adrenaline was to constrict the blood vessels to help decrease any bleeding. They also injected heaps of local so when I woke I wasn't too bad with pain. The surgeon said that I didn't bleed bad with the cutting but when they went to stitch me up, I started to bleed with the stitches being pulled through.....so not bad when cutting but sensitive while stitching....... However, I still didn't bleed too much and had very minimal ooze following the surgery. In fact, VERY minimal. I was told that I was bleeding like someone who had normal platelet count. However, obviously they still are very careful because my count is generally lower and a low neutrophil count can make bleeding and healing more of an issue. My neutrophils were still normal for me but low for someone who is normal. I had IV antibiotics given while in surgery.
I am sure you will love this info but it is actually that time of the month for me so it has been hard to tell where bleeding is coming from but we are pretty most certain that it is not coming from the incisions. As I mentioned before, the surgeon is really happy with me and continues to marvel with how well my body copes with surgery.
They gave me a good amount of pain relief in recovery but because the incision had local anaesthetic all injected in and around it, it wasn't all that bad. I was thinking how it didn't hurt much for being a wide incision and was quite bright when I woke up. I continued to feel bright down on the ward and was up and about to the bathroom and so on. I had some visitors! Thanks for coming to see me Mum, Denise and Alex, Darren and Angela and for the phone calls from my sister, a work mate and sms's from many people :-) Much appreciated. It all helped keep my spirits high :-) I appreciate the people who rang and couldn't come and see me because they were sick like dad.
However, that night, when the local anaesthetic wore off, boy was I in heaps of pain! It was crazy! I was so surprised! I was surprised because last time I had hardly any pain and went home the same day. Of course, I had to keep reminding myself I had more done this time. Alan oftens stays overnight with me when I have things done but this time he was going home to be with Isaac. Mum took Isaac and bed him down at her house until Alan was ready to pick him up later. Due to my distress, Alan didn't leave me til 11pm. I was just quite distressed and sore. Isaac has been sick so Alan needed to go to him. So Alan spoke to the night nurse about my anxiety and he went to get Isaac.
The pain just got out of control from there on. I ended up having 2 injections of fentanyl and panadeine forte and at some point I also had a good amount of tramadol. In the end, as it got closer to 2.20am, the night nurse came in my room, while I was still crying, and stroked my head and hand. She held my hand and I eventually fell asleep. I thought that was so sweet of the nurse. I got so distressed. I was so drugged up and had also had IVIG infusion after the surgery. IVIG infusion changes my perception as well and I don't cope emotionally as well as I do without it. I was panicked about everything, including dying from FA and pre-leukaemia and cancers and low platelets and all sorts. I remember raving on and on while the nurse stroked my head and hand! I was distressed. I take my hat off to her for being so quiet and controlled and reassuring!
Anyway, I didn't end up going home the next day due to needing more pain relief. I just rested. I had a better night's sleep the second night and managed without the fentanyl injections. I am still very sore but have managed to come home. I think recovery will take a little longer from this surgery than 6 weeks ago. Please pray my marrow recovers ok from the flu bug a few weeks ago. That always worries me.
I will find out the pathology results from the surgery and biopsies on Tuesday. Please pray that will be ok.
Pray that I don't feel too bad from the IVIG as well. On Wednesday I find out my bone marrow biopsy results as well. That is always such a huge, emotional thing.
Did I tell you all that Alan has now got a new job??? He has had one for 2 weeks with a paving franchise. He does like site management or something. Administration.....his brother is expanding his business and needed someone to take a certain position and Alan got it. Alan works 3 days a week like he was before in business management. Alan also got into university and this week was his first week doing his Bachelor of Environmental Science. He is doing external study full time. So it looks like things are looking up for us in the job area.
Oh, yes! Our house is now under contract! We got an offer on our house and the call off period has finished. Finally, we are selling our house! Praise the Lord! Things are coming under control :-)
Anyway, pray for Isaac and Alan. Isaac has been unwell with a fever, cough, runny nose, not much appetite and very flat. He is now on antibiotics but it is always a worry if I catch what he has, especially since my marrow is a bit suppressed...more than usual right now! Alan is not feeling well either. He is feeling flat and coughing a bit as well. I just cannot catch this right now! Pray for protection! Also, it is not nice to see them both sick :-(
I have some time off work while I get better.
Ok, that's all for my update! Thanks for supporting me and encouraging me. Will post again soon. I have some school holiday updates that I want to do....pictures etc. I haven't gotten around to it yet.
Lots of love,
Charisse
Tuesday, June 23, 2009
CT Scan and Oncologist appointment
Hello People,
I had the CT scan on Friday last week and I got the results today. The good news is that the CT scan shows no inflammation in the lymph nodes or glands in the abdomen or the groin. So no evidence that the cancer has spread. Whoo Hoo!!!
However, I thought I would feel estatic after hearing this news. I was incredibly relieved but I still feel SO down. The oncologist was extremely nice. We had a good discussion. He had read the appropriate parts of the FA handbook and had my report from the cancer that had been removed.
He told me that the cancer was 1.2 mm deep which I knew. Apparently there is not really a chance of the cancer microscopicly breaking off into the lymph nodes when it is only 1mm deep. Once it gets over that, there is an approx 7% chance that the cancer has mircroscopicly broken off and entered the lymph nodes even if the CT scan is clear. So I suppose this is why I feel so down. It is such a SMALL chance but apparently the usual is to remove the groin lymph nodes as a precautionary measure even if there is no evidence with the Scan or on examination.
However, this can cause problems in the future, especially for a young woman. Swelling of the legs and groin, drainage problems and problems with dealing with infection. There is the risk of infection when having them removed and bleeding etc.
Of course, for someone like me who has not had a transplant and does have low neutrophils and platelets, it can complicate things. In the future, with low immunity and the groin lymph nodes gone, it can cause problems for infection because I already have low immunity.
They can highlight the lymph node that the area where the cancer was drains to first and only remove that one. Of course, you could have a false positive and end up removing perfectly good lymph nodes with no cancer and then still have complications later one. *sigh*
To be honest, I am feeling rather overwhelmed right now by all of FA. Really overwhelmed. I feel quite a bit depressed and I really want to cry.
Another option, because of the risks and complications for me, is to not remove the lymph nodes at all because the risk factor of spreading is only 7% and just to monitor the lymph nodes which is what I am doing for the head cancer I had out last year.
Obviously surveillance for vulva cancer now would be 3 monthly for me. Examination of lymph nodes and the vulva +/- vulvoscopy and an ultrasound of the groin lymph nodes. This is an option I am looking at.
Lymph node removal can be rather controversal because they can remove completely healthy lymph nodes with no cancer and cause further problems by doing so......because there is no evidence but the theoretical 7% of possible spreading due to the 1.2mm deep cancer rather than 1 mm.
Anyway, I am not fond of causing myself more problems. I am also not fond of having the cancer spread. If it was more like 30% or 50% or 90%, I would obviously have to be more drastic involving the lymph nodes but with 7% I am not too sure and I don't want to make the wrong decision!!!!! Decisions are CRAZY!!!
I have a gut feeling that it is not right to remove the lymph nodes for me and I should just have agressive surveillance like what I am doing with my head........although my surveillance with the gynae will be more agressive as the ultrasounds would also be done 3 monthly. My head MRI's are done annually....or was it 6 monthly....boy I can't remember.
I have given the oncologist the email of the gynae/oncol at the NIH in the States and told him I want us to work out what is best with their opinion in regards to an FA patient. I will also talk to her myself. They would see more FA patients.
As for the area that was excised. They got the full cancer out. However, there are pre-cancerous cells leading right out to the margin. So the margins were not clear and need to be. So I have to go back to surgery, have a vulvoscopy done to see if there is more dysplasia in other areas and how far it goes around the area excised already. They will remove the pre-cancerous cells left there and if there are other cells that are highlighted in different spots, they will biopsy those and we will wait for those results before cutting more *sigh* This could be rather extensive surgery. I am praying that it won't be *sigh*.
A tentative booking for surgery is the 24th July.
I have't got any bone marrow results back yet.
Anyway, I do praise God that the scans came back negative though. If they had come back positive I would be in more trouble! So even though I still feel overwhelmed and down, I have to admit, that is wonderful news and I am so grateful.
I think another part of me feels so down because if I had cut this out earlier as I thought I should...and acted on my feeling....then the cancer wouldn't be over 1mm deep and I wouldn't even have to deal with this lymph nodes stuff! *sigh*
Thanks to all your support. Thanks for praying, thanks for being there for me and thanks for your encouragement!!!
Keep praying!
Lots of love,
Charisse
I had the CT scan on Friday last week and I got the results today. The good news is that the CT scan shows no inflammation in the lymph nodes or glands in the abdomen or the groin. So no evidence that the cancer has spread. Whoo Hoo!!!
However, I thought I would feel estatic after hearing this news. I was incredibly relieved but I still feel SO down. The oncologist was extremely nice. We had a good discussion. He had read the appropriate parts of the FA handbook and had my report from the cancer that had been removed.
He told me that the cancer was 1.2 mm deep which I knew. Apparently there is not really a chance of the cancer microscopicly breaking off into the lymph nodes when it is only 1mm deep. Once it gets over that, there is an approx 7% chance that the cancer has mircroscopicly broken off and entered the lymph nodes even if the CT scan is clear. So I suppose this is why I feel so down. It is such a SMALL chance but apparently the usual is to remove the groin lymph nodes as a precautionary measure even if there is no evidence with the Scan or on examination.
However, this can cause problems in the future, especially for a young woman. Swelling of the legs and groin, drainage problems and problems with dealing with infection. There is the risk of infection when having them removed and bleeding etc.
Of course, for someone like me who has not had a transplant and does have low neutrophils and platelets, it can complicate things. In the future, with low immunity and the groin lymph nodes gone, it can cause problems for infection because I already have low immunity.
They can highlight the lymph node that the area where the cancer was drains to first and only remove that one. Of course, you could have a false positive and end up removing perfectly good lymph nodes with no cancer and then still have complications later one. *sigh*
To be honest, I am feeling rather overwhelmed right now by all of FA. Really overwhelmed. I feel quite a bit depressed and I really want to cry.
Another option, because of the risks and complications for me, is to not remove the lymph nodes at all because the risk factor of spreading is only 7% and just to monitor the lymph nodes which is what I am doing for the head cancer I had out last year.
Obviously surveillance for vulva cancer now would be 3 monthly for me. Examination of lymph nodes and the vulva +/- vulvoscopy and an ultrasound of the groin lymph nodes. This is an option I am looking at.
Lymph node removal can be rather controversal because they can remove completely healthy lymph nodes with no cancer and cause further problems by doing so......because there is no evidence but the theoretical 7% of possible spreading due to the 1.2mm deep cancer rather than 1 mm.
Anyway, I am not fond of causing myself more problems. I am also not fond of having the cancer spread. If it was more like 30% or 50% or 90%, I would obviously have to be more drastic involving the lymph nodes but with 7% I am not too sure and I don't want to make the wrong decision!!!!! Decisions are CRAZY!!!
I have a gut feeling that it is not right to remove the lymph nodes for me and I should just have agressive surveillance like what I am doing with my head........although my surveillance with the gynae will be more agressive as the ultrasounds would also be done 3 monthly. My head MRI's are done annually....or was it 6 monthly....boy I can't remember.
I have given the oncologist the email of the gynae/oncol at the NIH in the States and told him I want us to work out what is best with their opinion in regards to an FA patient. I will also talk to her myself. They would see more FA patients.
As for the area that was excised. They got the full cancer out. However, there are pre-cancerous cells leading right out to the margin. So the margins were not clear and need to be. So I have to go back to surgery, have a vulvoscopy done to see if there is more dysplasia in other areas and how far it goes around the area excised already. They will remove the pre-cancerous cells left there and if there are other cells that are highlighted in different spots, they will biopsy those and we will wait for those results before cutting more *sigh* This could be rather extensive surgery. I am praying that it won't be *sigh*.
A tentative booking for surgery is the 24th July.
I have't got any bone marrow results back yet.
Anyway, I do praise God that the scans came back negative though. If they had come back positive I would be in more trouble! So even though I still feel overwhelmed and down, I have to admit, that is wonderful news and I am so grateful.
I think another part of me feels so down because if I had cut this out earlier as I thought I should...and acted on my feeling....then the cancer wouldn't be over 1mm deep and I wouldn't even have to deal with this lymph nodes stuff! *sigh*
Thanks to all your support. Thanks for praying, thanks for being there for me and thanks for your encouragement!!!
Keep praying!
Lots of love,
Charisse
Tuesday, June 16, 2009
CT Scan booked
Hi All,
my CT scan to check my abdomen and groin area is booked for Friday afternoon this week. I spoke to my head and neck oncologist to get some background on everything since I haven't yet met the gynae oncol and I just needed to talk to someone I trusted. He was disturbed about the news. He said that the CT scan will be looking at the lymph nodes and glands in the abdomen and groin. If the abdomen shows any inflammation or swelling then it is serious business. However, if that is fine and the groin area shows swelling or inflammation, I mustn't be too upset because it could be the drainage from the surgery done recently. Therefore, they would often repeat with an ultrasound to see if it really is cancer or just swelling from the surgery. He said that the gynae oncol I am referred to is the best and was very happy to hear I would be seeing him. Him....that alone makes me nervous. I have never been good with men.....not when it comes to private stuff *sigh*
Of course, it will be looked into whether more needs to be excised to make sure there are no pre-cancerous lesions left. On top of that I am wondering whether a vulvoscopy would be good to identify any other cells rather than just guessing. I am worried there is more left because I have been uncomfortable in other areas that are not lesions and now I am panicked. At the moment, I know the extreme discomfort is from surgery. We have sent the results to Blanche Alter. I refuse to miss anything and have asked them about the vulcvoscopy as well. When I see this gynae oncologist next week I am going to be prepared. Alan is also giving him a call to talk to him about Fanconi Anaemia. I have NO idea if he has even heard of the disease. He needs his own book and to understand that we are very actively involved in my care and decisions because it is so rare and needs special attention.
My bone marrow biopsy went well yesterday. I am quite sore. It seems the more I have done, the worse the pain gets each time. I have reached number 29 or 30. I need to re-count! Crazy! I asked for a pressure bandage afterwards because I didn't want a bone bruise. I have had one of them before when my platelets were higher and it was not nice. So now that they are lower, I want to avoid it. I spent all day sitting or lying on a towel.
Anyway, I need to get going. I have a haematology appointment this afternoon booked from before. My haem doesn't know of my new news yet, unless he has already received a letter but sometimes letters can be slow.
Thanks for all your support and prayers. I greatly appreciate them and need them. Thanks for your encouragement.
Love Charisse
my CT scan to check my abdomen and groin area is booked for Friday afternoon this week. I spoke to my head and neck oncologist to get some background on everything since I haven't yet met the gynae oncol and I just needed to talk to someone I trusted. He was disturbed about the news. He said that the CT scan will be looking at the lymph nodes and glands in the abdomen and groin. If the abdomen shows any inflammation or swelling then it is serious business. However, if that is fine and the groin area shows swelling or inflammation, I mustn't be too upset because it could be the drainage from the surgery done recently. Therefore, they would often repeat with an ultrasound to see if it really is cancer or just swelling from the surgery. He said that the gynae oncol I am referred to is the best and was very happy to hear I would be seeing him. Him....that alone makes me nervous. I have never been good with men.....not when it comes to private stuff *sigh*
Of course, it will be looked into whether more needs to be excised to make sure there are no pre-cancerous lesions left. On top of that I am wondering whether a vulvoscopy would be good to identify any other cells rather than just guessing. I am worried there is more left because I have been uncomfortable in other areas that are not lesions and now I am panicked. At the moment, I know the extreme discomfort is from surgery. We have sent the results to Blanche Alter. I refuse to miss anything and have asked them about the vulcvoscopy as well. When I see this gynae oncologist next week I am going to be prepared. Alan is also giving him a call to talk to him about Fanconi Anaemia. I have NO idea if he has even heard of the disease. He needs his own book and to understand that we are very actively involved in my care and decisions because it is so rare and needs special attention.
My bone marrow biopsy went well yesterday. I am quite sore. It seems the more I have done, the worse the pain gets each time. I have reached number 29 or 30. I need to re-count! Crazy! I asked for a pressure bandage afterwards because I didn't want a bone bruise. I have had one of them before when my platelets were higher and it was not nice. So now that they are lower, I want to avoid it. I spent all day sitting or lying on a towel.
Anyway, I need to get going. I have a haematology appointment this afternoon booked from before. My haem doesn't know of my new news yet, unless he has already received a letter but sometimes letters can be slow.
Thanks for all your support and prayers. I greatly appreciate them and need them. Thanks for your encouragement.
Love Charisse
Monday, June 15, 2009
Pathology Results
Hello All,
I am going to get straight to it. The pathology on the vulva lesion that was removed on Thursday came back as cancer. Squamous Cell Carcinoma, a typical FA cancer. They got all of it, however, pathology shows that the pre-cancerous cells led right to where they excised so more will probably have to be taken out to stop that from turning.
While only a spot of the lesion was cancerous and the rest pre-cancerous, the depth was something like 1.2mm and that is deep enough to concern them that it could have already spread into the abdominal lymph nodes and glands. I am praying this has not happened. Tomorrow we will organise a CT scan of the abdomen and lymph nodes to see if there is any spread. I have been told it is possible that I will need my lymph nodes biopsied and may be removed if there is a problem. I am booked in to see a gynaecological oncologist because this now stretches beyond the expertise of my current gynae. I am booked in to see him a week tomorrow....the 24th of June.
Yes, I feel shocked and very shaken. I was told that this lump looked like an inflammatory granuloma and not anything nasty, although we were cutting the whole thing out anyway. When I had a biopsy done on it last year it came back clear of pre-cancerous or cancerous cells. It is horrible how quickly FA can speed things along and I kick myself for not just removing the whole thing earlier. I hope nothing has spread.
When the doctor rang, my heart started to boom so loudly and my hands started to shake and for 45 mins I could not stop shaking....legs and arms and body in general. It doesn't matter how bad you know FA can be. It doesn't matter how many times I am told bad news, I never seem to get used to it and not react. This has greatly upset me and I don't know what else to do but pray and try to survive.
My surgery to remove the lesion went well. A bit of swelling even now. No bruising and no bleeding. The actual day was full of drama but the actual surgery good.
I had my infusion on Friday. I managed to convince the other hospital to keep my IV line in for infusion at another hospital. Infusion went smoothly. I gave another haematologist the new FA handbook and he asked for my autograph, full name and date! Hehe
Tomorrow is my bone marrow biopsy at 1130. I am overwhelmed by cancer issues. I have been fighting for years against pre-leukaemic changes with prayer. I feel overwhelmed in light of the new news. So please pray that my marrow will not have anything bad....I would like for it to be totally normal.
Ok, that is all I have to say.
Love you,
Charisse
I am going to get straight to it. The pathology on the vulva lesion that was removed on Thursday came back as cancer. Squamous Cell Carcinoma, a typical FA cancer. They got all of it, however, pathology shows that the pre-cancerous cells led right to where they excised so more will probably have to be taken out to stop that from turning.
While only a spot of the lesion was cancerous and the rest pre-cancerous, the depth was something like 1.2mm and that is deep enough to concern them that it could have already spread into the abdominal lymph nodes and glands. I am praying this has not happened. Tomorrow we will organise a CT scan of the abdomen and lymph nodes to see if there is any spread. I have been told it is possible that I will need my lymph nodes biopsied and may be removed if there is a problem. I am booked in to see a gynaecological oncologist because this now stretches beyond the expertise of my current gynae. I am booked in to see him a week tomorrow....the 24th of June.
Yes, I feel shocked and very shaken. I was told that this lump looked like an inflammatory granuloma and not anything nasty, although we were cutting the whole thing out anyway. When I had a biopsy done on it last year it came back clear of pre-cancerous or cancerous cells. It is horrible how quickly FA can speed things along and I kick myself for not just removing the whole thing earlier. I hope nothing has spread.
When the doctor rang, my heart started to boom so loudly and my hands started to shake and for 45 mins I could not stop shaking....legs and arms and body in general. It doesn't matter how bad you know FA can be. It doesn't matter how many times I am told bad news, I never seem to get used to it and not react. This has greatly upset me and I don't know what else to do but pray and try to survive.
My surgery to remove the lesion went well. A bit of swelling even now. No bruising and no bleeding. The actual day was full of drama but the actual surgery good.
I had my infusion on Friday. I managed to convince the other hospital to keep my IV line in for infusion at another hospital. Infusion went smoothly. I gave another haematologist the new FA handbook and he asked for my autograph, full name and date! Hehe
Tomorrow is my bone marrow biopsy at 1130. I am overwhelmed by cancer issues. I have been fighting for years against pre-leukaemic changes with prayer. I feel overwhelmed in light of the new news. So please pray that my marrow will not have anything bad....I would like for it to be totally normal.
Ok, that is all I have to say.
Love you,
Charisse
Friday, May 1, 2009
Good Day with Isaac
Hi All....again....hehe,
Isaac had a good day today. He asked for a snack at morning tea time and so I offered him some things and he chose to have some jatz (cracker biscuits). I thought, "this will be interesting" but still gave them to him. He had two at first. I was doing something and he said he was finished. I was SO surprised! No crying, or gagging as he ate these so we got him another 2 with vegemite on them and he ate them too, clearing his throat a little! I was so excited. He then asked for a piece of bread with butter. So we gave him it and I waited with baited breath for the tears and gagging and spitting. A little clearing of the throat but nothing else happened! Yay! He had eaten without a fuss! I had high hopes for lunch time being a success as well :-)
Lunch time approached and he wanted orange soupe (pumpkin) with teddy noodles. So I heated the soup through since we had it yesterday and cooked the teddy noodles and mixed it all together. He ate quite a bit and then said he was full. That usually means he is getting tired feeding himself and because I want him to have a good lunch I offered to help. He ate almost the whole soup and the noodles. He spat up one noodle and gagged a little. But there were no tears...YAY!!!!!!
He had a biscuit for afternoon tea and didn't have many issues...still no tears.
We went to visit Aunty Angela this afternoon and that was fun. Then we went to the hairdresser for Isaac to have a hair cut. It was well overdue! Isaac never likes having his hair cut and always complains prior to the appointment. He used to scream during his hair cut but since starting school last year, he gets a bit pouty (a word???) and sulks a bit but is always very good. Today I was expecting the same. Well he sat there getting his hair cut and he started screaming! I was so surprised! As the scissors came closer he did this high pitched scream/squeal and burst into fresh tears....crying and crying and then screaming again. I apologised to the hair dresser explaining that he had a traumatic week last week and he must be just traumatised. I then tried to coax Isaac through the haircut which was hard with him crying and screaming at intervals! I was telling him that the hairdresser is not hurting him, just cutting his hair like we always do! But when he saw the scissors out the corner of his eye, he would panic and scream and then cry!
I must say that Isaac must be a bit traumatised from what happened last week post tonsillectomy and his recovery! He must be very sensitive right now which is why he has been struggling to recover from it all. It makes me nervous that in a week I have to take him for another blood test. Just seeing the room and knowing what is going to happen freaks him out before they do anything! I know Isaac is a real sensitive kid but what I witnessed today made me feel sad that he was so traumatised last week. I know that when I was a child...and of course I have FA....I had so much stuff happen and felt out of control and traumatised a lot of the time! Poor Isaac.
After the hair cut the man gave him a nice biscuit for doing a "good job", although I don't think Isaac was "well behaved" compared to how he usually is....but he wasn't deliberately being naughty today......I could see the fear in his eyes....shame my poor baby! I told the man he was so nice giving Isaac a biscuit when Isaac screamed and didn't sit still and stuff. The man was not phased by Isaac's outburst which was good. He is a great hair dresser and is one of the people who does Isaac specifically. He reassured me that Isaac was acting out of fear and trauma of what he had been through last week.
Then Isaac and I headed home. On the way home he asked for some MacDonalds and I thought, "wow, he is feeling better!". Alan and I got him MacDonalds for dinner and Isaac ate 4 of the 6 chicken nuggets and a bit of the chips, the chocolate milkshake and we cooked him up some brocholi which he ate the lot of :-) No tears but there was HEAPS of GROSS gagging!!! Hahahahahahahaha! He told us that God had told him to eat all his tea and not worry about his throat hurting.....so he did. Impressive hey????
Isaac also had only 3 doses of panadol for pain relief today instead of 4 doses! He is now off the tramadol (strong pain relief).
He is still waking distressed at night where he isn't awake and you have to wake him to calm him down. Shame. He still is very pale. However, he may be able to go to school on Monday. We will trial him and if he doesn't cope, he can stay home the next day.
In one week, as I said, we need to have those bloods taken for him to check his CBC (Complete blood count, platelets, haemaglobin), his INR and prothrombin times (clotting times) and whether his marrow is producing the baby red blood cells properly (reticulytes,....test has a longer name). Because he is pale and had the bleed they want to check that these are all ok. Also, he had the abnormal clotting...it was too slow so they want to see if it is like that when he is well and eating more normally. What a joy. I pray that it all goes well.
As for me, stay in tune for my bone marrow biopsy date, my follow up MRI for my head and neck and sinuses and ENT follow up, gynae follow up and may be biopsy of down there again.....and my liver/breast ultrasounds that I am due. I had the dentist about 2 weeks ago. I also have a dermatology appointment to check the normal and see what my head scar is doing.
Thanks for checking in everyone!
Thanks for the support!
Love Charisse
Isaac had a good day today. He asked for a snack at morning tea time and so I offered him some things and he chose to have some jatz (cracker biscuits). I thought, "this will be interesting" but still gave them to him. He had two at first. I was doing something and he said he was finished. I was SO surprised! No crying, or gagging as he ate these so we got him another 2 with vegemite on them and he ate them too, clearing his throat a little! I was so excited. He then asked for a piece of bread with butter. So we gave him it and I waited with baited breath for the tears and gagging and spitting. A little clearing of the throat but nothing else happened! Yay! He had eaten without a fuss! I had high hopes for lunch time being a success as well :-)
Lunch time approached and he wanted orange soupe (pumpkin) with teddy noodles. So I heated the soup through since we had it yesterday and cooked the teddy noodles and mixed it all together. He ate quite a bit and then said he was full. That usually means he is getting tired feeding himself and because I want him to have a good lunch I offered to help. He ate almost the whole soup and the noodles. He spat up one noodle and gagged a little. But there were no tears...YAY!!!!!!
He had a biscuit for afternoon tea and didn't have many issues...still no tears.
We went to visit Aunty Angela this afternoon and that was fun. Then we went to the hairdresser for Isaac to have a hair cut. It was well overdue! Isaac never likes having his hair cut and always complains prior to the appointment. He used to scream during his hair cut but since starting school last year, he gets a bit pouty (a word???) and sulks a bit but is always very good. Today I was expecting the same. Well he sat there getting his hair cut and he started screaming! I was so surprised! As the scissors came closer he did this high pitched scream/squeal and burst into fresh tears....crying and crying and then screaming again. I apologised to the hair dresser explaining that he had a traumatic week last week and he must be just traumatised. I then tried to coax Isaac through the haircut which was hard with him crying and screaming at intervals! I was telling him that the hairdresser is not hurting him, just cutting his hair like we always do! But when he saw the scissors out the corner of his eye, he would panic and scream and then cry!
I must say that Isaac must be a bit traumatised from what happened last week post tonsillectomy and his recovery! He must be very sensitive right now which is why he has been struggling to recover from it all. It makes me nervous that in a week I have to take him for another blood test. Just seeing the room and knowing what is going to happen freaks him out before they do anything! I know Isaac is a real sensitive kid but what I witnessed today made me feel sad that he was so traumatised last week. I know that when I was a child...and of course I have FA....I had so much stuff happen and felt out of control and traumatised a lot of the time! Poor Isaac.
After the hair cut the man gave him a nice biscuit for doing a "good job", although I don't think Isaac was "well behaved" compared to how he usually is....but he wasn't deliberately being naughty today......I could see the fear in his eyes....shame my poor baby! I told the man he was so nice giving Isaac a biscuit when Isaac screamed and didn't sit still and stuff. The man was not phased by Isaac's outburst which was good. He is a great hair dresser and is one of the people who does Isaac specifically. He reassured me that Isaac was acting out of fear and trauma of what he had been through last week.
Then Isaac and I headed home. On the way home he asked for some MacDonalds and I thought, "wow, he is feeling better!". Alan and I got him MacDonalds for dinner and Isaac ate 4 of the 6 chicken nuggets and a bit of the chips, the chocolate milkshake and we cooked him up some brocholi which he ate the lot of :-) No tears but there was HEAPS of GROSS gagging!!! Hahahahahahahaha! He told us that God had told him to eat all his tea and not worry about his throat hurting.....so he did. Impressive hey????
Isaac also had only 3 doses of panadol for pain relief today instead of 4 doses! He is now off the tramadol (strong pain relief).
He is still waking distressed at night where he isn't awake and you have to wake him to calm him down. Shame. He still is very pale. However, he may be able to go to school on Monday. We will trial him and if he doesn't cope, he can stay home the next day.
In one week, as I said, we need to have those bloods taken for him to check his CBC (Complete blood count, platelets, haemaglobin), his INR and prothrombin times (clotting times) and whether his marrow is producing the baby red blood cells properly (reticulytes,....test has a longer name). Because he is pale and had the bleed they want to check that these are all ok. Also, he had the abnormal clotting...it was too slow so they want to see if it is like that when he is well and eating more normally. What a joy. I pray that it all goes well.
As for me, stay in tune for my bone marrow biopsy date, my follow up MRI for my head and neck and sinuses and ENT follow up, gynae follow up and may be biopsy of down there again.....and my liver/breast ultrasounds that I am due. I had the dentist about 2 weeks ago. I also have a dermatology appointment to check the normal and see what my head scar is doing.
Thanks for checking in everyone!
Thanks for the support!
Love Charisse
Thursday, April 30, 2009
Isaac's Progress
Hello All,
Isaac is getting better slowly. Drinking is now not a problem. Although, you still need to encourage him to have a drink but he can swallow fine.
It is eating that is a difficulty. He can swallow but when he does his ear hurts and his throat hurts and burns he said....it is hot that is what he said. He also thinks every bit of food gets stuck and then becomes distressed and goes off the whole meal. SO I start with the mushy veggies first so he will have those. I have to coax him lots because the paediatrician wants him to have this. There are tears and moaning and all sorts. I then offer him anything else. He likes bread and longs for it so I give it to him after the good stuff but once he swallows his first piece he cries and becomes quite distressed. *sigh* We will get there.
Isaac is very pale in the face. We saw the paediatrician on Tuesday who exclaimed at his paleness the moment we walked in. He checked for low iron by looking at his eyes and his hands but no clinical signs that he is anaemic. However, due to the bleed and his unwellness following the surgery, the paed wants to check somethings. When bloods were taken during the bleed, his clotting time came back too slow and some other tests were abnormal. SO they are doing those again in about a week. It is possible that lack of proper diet contributed to these test results being abnormal. However, in case something is wrong they must check.
Isaac has to have a CBC (complete blood count...platelets hgb etc), he has to have a test that shows if the bone marrow is making baby red blood cells and the clotting time test and INR. Hopefully there will be nothing wrong with the production of these cells in his marrow. If he is anaemic, then they want to put him on iron supplements. They need to find out why he is still pale. SO that will happen in about a week.
We were planning on having Isaac back at school on Monday. I know a lot can happen in 3 days but looking at him now, I am not sure he can go back yet. Things can change for the good quickly in 3 days.
OK, I am REAL tired. I worked in recovery on Wed for 8.5 hours and it was great fun.,
I have a nursing job interview in a week with a day surgery hospital as a casual staff member. I am hoping to have the two jobs,
I am off to bed! Thanks for keepig up!
Love Charisse
Isaac is getting better slowly. Drinking is now not a problem. Although, you still need to encourage him to have a drink but he can swallow fine.
It is eating that is a difficulty. He can swallow but when he does his ear hurts and his throat hurts and burns he said....it is hot that is what he said. He also thinks every bit of food gets stuck and then becomes distressed and goes off the whole meal. SO I start with the mushy veggies first so he will have those. I have to coax him lots because the paediatrician wants him to have this. There are tears and moaning and all sorts. I then offer him anything else. He likes bread and longs for it so I give it to him after the good stuff but once he swallows his first piece he cries and becomes quite distressed. *sigh* We will get there.
Isaac is very pale in the face. We saw the paediatrician on Tuesday who exclaimed at his paleness the moment we walked in. He checked for low iron by looking at his eyes and his hands but no clinical signs that he is anaemic. However, due to the bleed and his unwellness following the surgery, the paed wants to check somethings. When bloods were taken during the bleed, his clotting time came back too slow and some other tests were abnormal. SO they are doing those again in about a week. It is possible that lack of proper diet contributed to these test results being abnormal. However, in case something is wrong they must check.
Isaac has to have a CBC (complete blood count...platelets hgb etc), he has to have a test that shows if the bone marrow is making baby red blood cells and the clotting time test and INR. Hopefully there will be nothing wrong with the production of these cells in his marrow. If he is anaemic, then they want to put him on iron supplements. They need to find out why he is still pale. SO that will happen in about a week.
We were planning on having Isaac back at school on Monday. I know a lot can happen in 3 days but looking at him now, I am not sure he can go back yet. Things can change for the good quickly in 3 days.
OK, I am REAL tired. I worked in recovery on Wed for 8.5 hours and it was great fun.,
I have a nursing job interview in a week with a day surgery hospital as a casual staff member. I am hoping to have the two jobs,
I am off to bed! Thanks for keepig up!
Love Charisse
Saturday, April 25, 2009
Isaac home
Hello All,
Isaac came home at 10am this morning. He has been a bit brighter. However, eating is not something he likes to do. I am not pushing eating at the moment. Drinking is what we need him to do more. I have made strawberry milks, banana/chocolate/ice cream milk shakes, water and offered red cordial and more. It doesn't seem to matter what I offer or set before him, he grizzles and takes these tiny sips! I thought he would gulp down the banana/chocolate milk shake like he usually does and he turned the whole thing away! It is so frustrating.
He drank enough late last night at the hospital because his current IV jelco was inflammed and had to come out. We told him that if he drank enough then he would not need another. We had to really encourage him but he got a whole cup of milk down with our insistence in about an hour. Then he had some water while we played a game and went for a walk. So he was allowed home today. Also, Alan and I wondered if now that he can swallow water and stuff, that he might improve in his own environment at home. We must continue to encourage the drinking. The problem is that Isaac is refusing the stuff he really likes. If I purree things like soup and stuff, he will refuse that and clamp his teeth shut. He doesn't even want any chocolate!
So I just keep encouraging and reminding him that if he doesn't have fluids, then we have to ring the paed and go back to the hospital. Even ice-cream is a fluid. SO he can have a big bowl of ice-cream. Do you think he wanted it? Noooooooooo.........he has had 3 teaspoons of custard (that is also a type of fluid) and wanted no more. It has been really frustrating. How much he wees out will tell me how hydrated he is. So we will continue and it can only get better as his surgical site heals more and more.
What a drama at lunch time with the antibiotics. He didn't want them. Usually he LOVES the taste of the antibiotics. But not when he feels like this. If I put them in something else he just refuses it and we waste it. I learnt that at the hospital. I can disguise something in poo medicine but some things can't be mixed with this medicine. I disguised oxycodone in that the first night and he took it. You see, Isaac has trouble with constipation and he knows if he doesn't take that stuff, he gets real sore. He also likes the taste......so no matter what, he takes his poo medicine quite happily. If only he connected the two dots with his recovery and the medicine he has to have......if only he would realise how this would all help. SO it took 20 mins to get the antibiotic down and he spat the first bit. I actually got a bit cross because I think Isaac needed to have some "firmness" to see that this is not acceptable. He is 6 and you can reason with them a bit., but not much when they are unwell it seems...ahhhhhh.
You see with tonsillectomies, the more they DON'T eat or drink, the worse the pain actually gets. So the pain goes in a cycle............it is annoying.
So I guess I should go and encourage him to take another sip. It has been a long week.
Love Charisse
Isaac came home at 10am this morning. He has been a bit brighter. However, eating is not something he likes to do. I am not pushing eating at the moment. Drinking is what we need him to do more. I have made strawberry milks, banana/chocolate/ice cream milk shakes, water and offered red cordial and more. It doesn't seem to matter what I offer or set before him, he grizzles and takes these tiny sips! I thought he would gulp down the banana/chocolate milk shake like he usually does and he turned the whole thing away! It is so frustrating.
He drank enough late last night at the hospital because his current IV jelco was inflammed and had to come out. We told him that if he drank enough then he would not need another. We had to really encourage him but he got a whole cup of milk down with our insistence in about an hour. Then he had some water while we played a game and went for a walk. So he was allowed home today. Also, Alan and I wondered if now that he can swallow water and stuff, that he might improve in his own environment at home. We must continue to encourage the drinking. The problem is that Isaac is refusing the stuff he really likes. If I purree things like soup and stuff, he will refuse that and clamp his teeth shut. He doesn't even want any chocolate!
So I just keep encouraging and reminding him that if he doesn't have fluids, then we have to ring the paed and go back to the hospital. Even ice-cream is a fluid. SO he can have a big bowl of ice-cream. Do you think he wanted it? Noooooooooo.........he has had 3 teaspoons of custard (that is also a type of fluid) and wanted no more. It has been really frustrating. How much he wees out will tell me how hydrated he is. So we will continue and it can only get better as his surgical site heals more and more.
What a drama at lunch time with the antibiotics. He didn't want them. Usually he LOVES the taste of the antibiotics. But not when he feels like this. If I put them in something else he just refuses it and we waste it. I learnt that at the hospital. I can disguise something in poo medicine but some things can't be mixed with this medicine. I disguised oxycodone in that the first night and he took it. You see, Isaac has trouble with constipation and he knows if he doesn't take that stuff, he gets real sore. He also likes the taste......so no matter what, he takes his poo medicine quite happily. If only he connected the two dots with his recovery and the medicine he has to have......if only he would realise how this would all help. SO it took 20 mins to get the antibiotic down and he spat the first bit. I actually got a bit cross because I think Isaac needed to have some "firmness" to see that this is not acceptable. He is 6 and you can reason with them a bit., but not much when they are unwell it seems...ahhhhhh.
You see with tonsillectomies, the more they DON'T eat or drink, the worse the pain actually gets. So the pain goes in a cycle............it is annoying.
So I guess I should go and encourage him to take another sip. It has been a long week.
Love Charisse
Friday, April 24, 2009
Isaac Haemorraged but is Stable Now
Hi All,
what dramas! Isaac was discharged after a rough night of crying and being really distressed on Wed night. He did really well from the surgery but woke up at about 2 am very distressed and sore. I had gone home to rest but Alan was there. Because of FA, if I get too many crazy, late nights I sometimes get sick or ulcers and VERY exhausted! I needed to make sure that didn't happen. Alan tells me Isaac was quite distressed and all he wanted was his mummy. I felt bad when he told me but honoured all at once. I just needed rest but wanted to be there for him.
I arrived at the hospital at 10am the next day and Isaac's nanny was there watching him. He was totally exhausted and when I asked them to check his temp it was slightly high at 37.2 degrees C. He was sleepy and didn't want anything to eat or drink and he had struggled with his breakfast. Yet, they still said he could come home. I was a little worried to be honest but took him home. We had to carry him to the car. When we got home he slept and slept and slept. He was due pain relief so I woke him up but he couldn't get it down. He spat it all out and cried and was distressed. So I took his temperature and it had gone to 37.5 degrees C. From being a nurse, I knew I should call right then in case of infection. The doctors were impossible to get! The ENT's were going on leave the next day and I wanted to work this all out. Isaac refused anything via mouth and at one point I spent about 5 mins trying to rouse him with my knuckles on his chest, shouting his name loudly and he wouldn't wake up. I took his temp again and did his observations (typical nurse I know). His temp at risen to 38 degrees real quick and he was tachycardic. I was worried then. Since I was having trouble getting hold of the surgeon we opted to go for Isaac's paediatrician who he has had since being born premie. Bless his heart, he was in a C-section but rang my mobile immediately and told me to bring Isaac to outpatients at the hospital where I work which is closer.
So we took him there at the alloted time and the paed wanted to admit him for a short stay so they could see if he would drink 200 mls to 300 mls in 3 hours. If not, he had to be cannulated again and have a drip and be monitored overnight. They wanted to monitor his temperature and he had now gone 8.5 hours without pain relief or medication to get down his fever! I couldn't get it down him! I felt distressed! So the nurses did a great job and got it down with many tears and Isaac being really sleepy. Yay! His temp came down a couple of hours later. However, he was not doing well with the fluids and the sleepiness. He asked to go to the toilet though which was a good sign that he was not totally dehydrated.
So I took him to the toilet and while he was there, he used his bowels and I saw blood and then Isaac started making choking noises! I looked at him and there was fresh, bright red blood coming out both his nose and his mouth with huge clots! It was down his front, on the toilet and on the floor. I grabbed a paper towel to catch it so they can measure it. I had nothing else. Isaac was distressed and the blood just kept coming and coming! It was scary. I buzzed the nurse while reassuring Isaac, "it is ok. Just some blood. We will stop the blood. You will be ok" while thinking, "oh no, this is a huge amount of blood. I hope he doesn't bleed out". No one seemed to be coming but I could hear voices so I called out. Alan said, "hang on" and I said, "I need you to come here now!".....so he did and then the nurse and well.......then the doctors and nurses acted SO quickly! Isaac was put on the bed, ice on his neck to try and stop the bleeding, ice in his mouth to stop the bleeding........nurses and doctors putting in 2 IV's , one in each arm.....CBC's, group and hold, blood cultures, clotting times....you name it, they did it! Also an ambulance was called straight away to transfer him to our big women's and children's hospital in the city which is where I was diagnosed. The nurses and doctors were great. Explained everything to Isaac and managed to joke with him while giving him great care. I work at that hospital and they treated Alan and I wonderfully!
It was pretty emotional and scary. I was so worried and watching Isaac's face made me want to cry. He was scared and so pale and helpless looking with blood on his face and drips and so on.
We were put in an ambulance once Isaac was stabalised and went to the women's and childrens. Our private ENT met us there and when he looked at Isaac the active bleeding had stopped. They had told us that Isaac may need to go back in for surgery but by this stage they were happy it had stopped and that didn't look like the case anymore.
However, he was started on IV antibiotics and the cultures today confirmed an infection present. Bloods also revealed his clotting times were too slow and they wanted to investigate as to why. Isaac's pain was out of control so they gave him morphine type drug which bombed him out.
He is still in hospital and hopefully coming out tomorrow. He has started to eat a little and drink a little more but not enough to be removed from the drip overnight. He played a little in the play room this afternoon which was his first time out of bed properly. His temperature is now consistently down so the infection is being dealt with. He is still having the IV antibiotics. He is still having heavy pain relief and will be discharged with strong stuff to because we need him to continue to heal and eat and drink at home too.
So tomorrow morning, if he eats all his breakfast and drinks a cup of drink, he can go home. His clotting times came back normal today with his bloods and haematology want us to check that again in 2 weeks. If it is normal then, they will leave it and it was an anomaly. If it is not right again, he must come to haematology outpatients.
Isaac has been very brave and ......so have I ....hehe.
I must go to bed. Thank you for praying for Isaac.
Love Charisse
what dramas! Isaac was discharged after a rough night of crying and being really distressed on Wed night. He did really well from the surgery but woke up at about 2 am very distressed and sore. I had gone home to rest but Alan was there. Because of FA, if I get too many crazy, late nights I sometimes get sick or ulcers and VERY exhausted! I needed to make sure that didn't happen. Alan tells me Isaac was quite distressed and all he wanted was his mummy. I felt bad when he told me but honoured all at once. I just needed rest but wanted to be there for him.
I arrived at the hospital at 10am the next day and Isaac's nanny was there watching him. He was totally exhausted and when I asked them to check his temp it was slightly high at 37.2 degrees C. He was sleepy and didn't want anything to eat or drink and he had struggled with his breakfast. Yet, they still said he could come home. I was a little worried to be honest but took him home. We had to carry him to the car. When we got home he slept and slept and slept. He was due pain relief so I woke him up but he couldn't get it down. He spat it all out and cried and was distressed. So I took his temperature and it had gone to 37.5 degrees C. From being a nurse, I knew I should call right then in case of infection. The doctors were impossible to get! The ENT's were going on leave the next day and I wanted to work this all out. Isaac refused anything via mouth and at one point I spent about 5 mins trying to rouse him with my knuckles on his chest, shouting his name loudly and he wouldn't wake up. I took his temp again and did his observations (typical nurse I know). His temp at risen to 38 degrees real quick and he was tachycardic. I was worried then. Since I was having trouble getting hold of the surgeon we opted to go for Isaac's paediatrician who he has had since being born premie. Bless his heart, he was in a C-section but rang my mobile immediately and told me to bring Isaac to outpatients at the hospital where I work which is closer.
So we took him there at the alloted time and the paed wanted to admit him for a short stay so they could see if he would drink 200 mls to 300 mls in 3 hours. If not, he had to be cannulated again and have a drip and be monitored overnight. They wanted to monitor his temperature and he had now gone 8.5 hours without pain relief or medication to get down his fever! I couldn't get it down him! I felt distressed! So the nurses did a great job and got it down with many tears and Isaac being really sleepy. Yay! His temp came down a couple of hours later. However, he was not doing well with the fluids and the sleepiness. He asked to go to the toilet though which was a good sign that he was not totally dehydrated.
So I took him to the toilet and while he was there, he used his bowels and I saw blood and then Isaac started making choking noises! I looked at him and there was fresh, bright red blood coming out both his nose and his mouth with huge clots! It was down his front, on the toilet and on the floor. I grabbed a paper towel to catch it so they can measure it. I had nothing else. Isaac was distressed and the blood just kept coming and coming! It was scary. I buzzed the nurse while reassuring Isaac, "it is ok. Just some blood. We will stop the blood. You will be ok" while thinking, "oh no, this is a huge amount of blood. I hope he doesn't bleed out". No one seemed to be coming but I could hear voices so I called out. Alan said, "hang on" and I said, "I need you to come here now!".....so he did and then the nurse and well.......then the doctors and nurses acted SO quickly! Isaac was put on the bed, ice on his neck to try and stop the bleeding, ice in his mouth to stop the bleeding........nurses and doctors putting in 2 IV's , one in each arm.....CBC's, group and hold, blood cultures, clotting times....you name it, they did it! Also an ambulance was called straight away to transfer him to our big women's and children's hospital in the city which is where I was diagnosed. The nurses and doctors were great. Explained everything to Isaac and managed to joke with him while giving him great care. I work at that hospital and they treated Alan and I wonderfully!
It was pretty emotional and scary. I was so worried and watching Isaac's face made me want to cry. He was scared and so pale and helpless looking with blood on his face and drips and so on.
We were put in an ambulance once Isaac was stabalised and went to the women's and childrens. Our private ENT met us there and when he looked at Isaac the active bleeding had stopped. They had told us that Isaac may need to go back in for surgery but by this stage they were happy it had stopped and that didn't look like the case anymore.
However, he was started on IV antibiotics and the cultures today confirmed an infection present. Bloods also revealed his clotting times were too slow and they wanted to investigate as to why. Isaac's pain was out of control so they gave him morphine type drug which bombed him out.
He is still in hospital and hopefully coming out tomorrow. He has started to eat a little and drink a little more but not enough to be removed from the drip overnight. He played a little in the play room this afternoon which was his first time out of bed properly. His temperature is now consistently down so the infection is being dealt with. He is still having the IV antibiotics. He is still having heavy pain relief and will be discharged with strong stuff to because we need him to continue to heal and eat and drink at home too.
So tomorrow morning, if he eats all his breakfast and drinks a cup of drink, he can go home. His clotting times came back normal today with his bloods and haematology want us to check that again in 2 weeks. If it is normal then, they will leave it and it was an anomaly. If it is not right again, he must come to haematology outpatients.
Isaac has been very brave and ......so have I ....hehe.
I must go to bed. Thank you for praying for Isaac.
Love Charisse
Saturday, July 26, 2008
How Am I Feeling? Some Thank yous!
First of all,
thanks to Alan, my wife, for writing my last update.....hehe....but one correction, he is my husband.....hehe......that is funny. For those of you who do not know, Alan is my husband not my wife.
Ok, IVIG infusion went well on Friday. I was heaps wiped out from the anaesthetic on Thursday and my head has been throbbing something awful so I have been having digesic practically every 4 hours which has made me feel a bit wiped out too. Today my head was a bit better and not so painful but my hand has been really painful where they cut out the suspicuous spot as well. I re-dressed the wound yesterday and it looked good. It looked a bit digusting not even being 24 hours old, but healthy. I will re-dress it again in a day or so and check on its progress, especially if it feels more sore. It was funny. I was seeing the doctor and showing him and felt really strange. It looked gross but good medically and I felt like I was going to faint. Being a nurse who works in surgcial areas I have seen much bigger and fresher wounds before and don't feel weird but seeing it on myself made me feel real strange. Hahaha....it is so silly.
Alan helps me wash my hair. It still has some old blood in it. It has been washed twice but the stuff really gets stuck in there....betadine as well. We have to wash my hair in sections over the bath. It feels really vulnerable and sore. After the wash though, I feel nice.
I have been wearing my new hat. Even though they didn't shave much, there was not heaps of hair at the top of my head to flop over because of the position and so my head gets cold being winter here and all and then sore. Also, I feel subconscious so I wear my new hat. Here is a picture of my new hat below. I look at bit tired though:
I have a follow up appointment with the surgeon in 10 days with the stitches and possibly to find out any more pathology results on the tumor, whether I have this Muir-Torre Syndrome and whether they got all the tumor definitely.
My platelets have been holding steady and yesterday were 134 000 which is great. I did have support platelets before the surgery so they would have been even higher. It is just nice to see the platelets holding so there will be no need for any other support platelets for healing purposes. I was really excited that my White blood cells were 3000 and my neuts were 1500 and my haemaglobin still at 13.8 despite any bleeding in surgery. They said it bled more than usual. I don't know about that because my platelets would have been higher than 134 000. I just think it was head surgery. Head surgery bleeds a lot. My clotting factors are all normal......
I want to say some thank yous. Thank you to Alan's mum, Denise, for helping us with looking after Isaac, taking him to school and picking him up and bedding him down...and for taking me to infusion. Isaac needs a lot of support when we have incidents like this. He has been a bit more teary this weekend. Thank you for your support. Thank you, Alex, for your love and support as well. It has meant a lot to us.
Thank you to my sister, Liesl, for also picking Isaac up for me on infusion day.....once again, it is great that Isaac has that family support and for us too. Thank you...it is much appreciated. Tim, we love you too. Thank you for supporting us with love and prayer.
Thank you to my sister-in-law, Angela for all your phone calls and smses and friendship and love and chats. I am greatly grateful (hehe) for that and have appreciated your support. I LOVED working with you on the gastroenterology Unit last week! Hehe...we had fun (she and I are both nurses). Darren, you are a blessing too. Thanks for your love and support.
Mum and dad, even though you have been in Africa, we have felt your love and support and thank you for your constant messages. We love you...........
Hold on everyone.....you may be thanked...hehe
Teresa Clifton, even though you have had a baby, you have been so sweet and supportive with your emails and love. Thank you so much my friend. I love you.
Jennifer gough, another beautiful person who is a part of the FA Family. I love you and thank you for your supportive emails and friendship. Thank you for the beautiful flowers that pleasantly surprised me when I got home from IVIG infusion the day after. I was so touched. We took a picture to share them with everyone.....below is the picture:
They are beautiful flowers....thank you Jennifer.
I am almost finished.
Thank you to my dear friend, Danielle....for being a great personal friend and support and a great nanny to Isaac. We love you heaps. Kiss, kiss, kiss.........and to Chris (boyfriend) who is willing to help me out with taxying Isaac and I around this Tuesday. You are a blessing.
Leah, my beautiful friend, thank you to you for the help you will be giving me this Tuesday as well with looking after Isaac and I in the afternoon! We really appreciate it. I wanted to thank you in advance.
Cassie! My true best friend. We went through school together and have remained so close throughout the years. You have been through so much with me including when Shannon, my brother, died one month after his transplant. I know you remember the day well. I love you. Thanks for your love and support.
So much support!!!! So many messages in my guestbook and emails. I love my FA Family! You guys are great. If I have not thanked you personally, please consider yourselves thanked now. It would become even longer if I continued to thank everyone. However, I wanted to acknowledge those specific people.
One more person I cannot forget.....my husband, yes.....husband, Alan. Alan we have been married for 10 years this December and you have stuck by my side through many dramas with FA. I am blessed to have you as my husband. I am so glad you have not run away from me and have been so loyal. I could not do any of this without you. I love you very much. Thank you for always being there for me.
Ok, I have said all I can say tonight. I love you all and will update soon again.
Lots of love,
Charisse
Thursday, July 24, 2008
surgery
Hi everyone,
Alan here, Charisse's wife. Just updating all of her fans on how things went today with her surgery.
Charisse did very well and will spend a few more hours in hospital, but we plan to be home tonight.
I spoke with the surgeon, and he said the tumor was pretty localised, so he did not have to take an enormous section of charisse's scalp.. praise the Lord!!
they managed to shave around the area, and not a quarter of her head--to the relief of Charisse, who should be able to style her hair to cover.
As to be expected, Charisse exercised her patient rights with determination; kicking myself, two nurses, and the surgeon himself out of her room so she could negotiate how she is to be treated with the anaethetist... go Charisse!!!!
I donned the scrubs, shower cap and booties also; and walked charisse into theatre and held her hand as she fell asleep. The whole theatre knew when the G.A. took effect as she started to snore. he he he
The surgeon made an oval-shapped incision twice the depth of the tumor with an approriate margin around the outside. Thankfully, they were able to close the wound with stitches and not have to use a skin graft.
Further down the page, there is a picture of the site... it looks a little gorey in the picture, but it's not so nasty looking in real life.... or perhaps I am developing a tolerance to looking it.
Aside from all this, Charisse is feeling relatively good... a little pain (to be expected) but otherwise okay. As mentioned before, we will be heading home later tonight, then Charisse returns to another hospital tomorrow morning for her IVIG infusion!!
So that's it... if you would like to see the picture scroll down...
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Monday, February 4, 2008
2 weeks post surgery
Hello All,
I have been home now for a week and it has been 2 weeks since my surgery. I am doing well. My wound dressing is off and it looks good. One side decided to kind of "pop" and so it is going to heal with a wider scar in the corner of my wound. This is also the side that popped when I had Isaac via c-section....a trend for this part of the scar. Hehe....no infection but some ooz. There is some fresh granulation tissue at that point of the wound...this is good. This is fresh tissue forming and growing and it is rich in blood vessels which is why it is oozing. So I just now cover that with gauze and betadine the wound morning and night. I don't like it when Alan does that. It is still very sensitive and sore. I am still on my pain meds and even though the pain level is going down it still doesn't seem that I can drop one of my pain meds....I must be patient. It is abdominal surgery and it takes a while to recover. I have not been able to do the normal things around the house and have felt a bit bored...things feel a bit tedious when you can't do your normal routine. I wish I could wrestle with Isaac and stuff....but I will be able to do that again once this heals.
Isaac had his first day of big boy school today and he had a wonderful day. He has already made friends and I am relieved about that. He plays with a little boy called Hamish. He is a sweet boy. Isaac and him met at the uniform shop a week before school and found out they were in the same class. So Isaac started today knowing that he already had a friend and therefore, was more confident. He looked great in his uniform...so cute. He is still my baby boy.
Well, that is the extent of my update. I am still too sore to drive or get around but can't wait til I can drive again. I have IVIG infusion this Friday which I am not looking forward to so much....feel too sore to sit on those chairs and have a reaction afterward.....hmmm.
Otherwise things are good.
Thanks for checking up on me.
Love Charisse
I have been home now for a week and it has been 2 weeks since my surgery. I am doing well. My wound dressing is off and it looks good. One side decided to kind of "pop" and so it is going to heal with a wider scar in the corner of my wound. This is also the side that popped when I had Isaac via c-section....a trend for this part of the scar. Hehe....no infection but some ooz. There is some fresh granulation tissue at that point of the wound...this is good. This is fresh tissue forming and growing and it is rich in blood vessels which is why it is oozing. So I just now cover that with gauze and betadine the wound morning and night. I don't like it when Alan does that. It is still very sensitive and sore. I am still on my pain meds and even though the pain level is going down it still doesn't seem that I can drop one of my pain meds....I must be patient. It is abdominal surgery and it takes a while to recover. I have not been able to do the normal things around the house and have felt a bit bored...things feel a bit tedious when you can't do your normal routine. I wish I could wrestle with Isaac and stuff....but I will be able to do that again once this heals.
Isaac had his first day of big boy school today and he had a wonderful day. He has already made friends and I am relieved about that. He plays with a little boy called Hamish. He is a sweet boy. Isaac and him met at the uniform shop a week before school and found out they were in the same class. So Isaac started today knowing that he already had a friend and therefore, was more confident. He looked great in his uniform...so cute. He is still my baby boy.
Well, that is the extent of my update. I am still too sore to drive or get around but can't wait til I can drive again. I have IVIG infusion this Friday which I am not looking forward to so much....feel too sore to sit on those chairs and have a reaction afterward.....hmmm.
Otherwise things are good.
Thanks for checking up on me.
Love Charisse
Monday, January 28, 2008
one week post surgery! I'm Home!
Hello All,
good news. I came home today. Not so nice news...I am still in a lof of pain. Despite this pain I had had enough of the hospital. I wanted to manage my own pain relief at home without all the rules of the hospital...that doesn't mean that I take medication wrongly, it just means that I am adjusting my pain relief to different medication. The Women's and Children's Hospital does not prescribe the best med that helped me with C-section with Isaac and this same med is needed for helping with my pain relief but it was banned from the hospital....apparently too many people forming addictions. However, I have capadex for other procedures that are in in this hospital and I have them at home and the doctor mentioned I could take them once out of the hospital. I hope I don't end up back in hospital for problems with pain because I am unbelievably sore and it is really hard to move around. So I have started up a new pain regime and will see how that goes with relieving some pain.
I had had enough of the babies crying each night. I was on the gynae/antenatal ward and they needed to also use it as overflow for postnatal so there were lots of babies crying at night time and I became a little tired of that. I know the babies can't help it or the mothers but when you are in so much pain and you don't feel rested towards the end of your stay...it is time to go home and rest. However, at the beginning when I felt really awful with the pain and post surgery I knew I couldn't cope coming home and needed that break from my son...so it is weird how hospital is a relief at the beginning and then you get sick of it after a while...shows that you are ready to go home.
The cut looks great. The bruising is already fading. It looks less bruised than when I had my c-section with Isaac 5 years ago....same place and all. Amazing. I was amazed at how well my body handled the procedure. No bleeding out and no haemaglobin drop and platelets higher and stable all week!
Isaac is really glad to have me home. He was becoming teary with me in the hospital and said to me today, "when I wake up in the morning and check your bed, you will be lying there, sleeping! You will still be home!"....he had a great smile on his face.
He has a week until he starts school for the first time. I need to get the rest of his uniform from order. He is only a little guy and we had to order it. I really hope it all arrives in time. We also have to get his school shoes and hat. Hmmm...left it late you think? Hopefully Alan can take me out in the wheelchair to help look for shoes. I have no idea how much I can handle this week but at least Isaac will feel secure this week with me home and hopefully become excited about school. He still states that he doesn't want to go. I know he will enjoy it. I think he is nervous and he doesn't like the idea of leaving me at home but he will see that this is all normal for kids his age and this is what happens and mummy will be there to pick him up and talk to him about his day
I will be taking it easy this week even though there is school to organise. Alan will help with a lot of it.
I wanted to thank Ouma and Oupa, Nanna and Puppa and Danielle our dear Nanny to Isaac and friend to us for helping with Isaac this week while I was in hospital. It made it easier for Alan and I and I am sure it also made it easier on Isaac even though some days he was quite teary and just wanted to be with Alan and I.
Where from here...just recovering and the usual FA surveillance that I am due. Bone marrow biopsy/aspiration and MRI for head and neck cancer. With this surgery I also had all my gynae surveillance....hysteroscopy and pap smear.
Thanks for all your encouragement and messages.
Love Charisse
good news. I came home today. Not so nice news...I am still in a lof of pain. Despite this pain I had had enough of the hospital. I wanted to manage my own pain relief at home without all the rules of the hospital...that doesn't mean that I take medication wrongly, it just means that I am adjusting my pain relief to different medication. The Women's and Children's Hospital does not prescribe the best med that helped me with C-section with Isaac and this same med is needed for helping with my pain relief but it was banned from the hospital....apparently too many people forming addictions. However, I have capadex for other procedures that are in in this hospital and I have them at home and the doctor mentioned I could take them once out of the hospital. I hope I don't end up back in hospital for problems with pain because I am unbelievably sore and it is really hard to move around. So I have started up a new pain regime and will see how that goes with relieving some pain.
I had had enough of the babies crying each night. I was on the gynae/antenatal ward and they needed to also use it as overflow for postnatal so there were lots of babies crying at night time and I became a little tired of that. I know the babies can't help it or the mothers but when you are in so much pain and you don't feel rested towards the end of your stay...it is time to go home and rest. However, at the beginning when I felt really awful with the pain and post surgery I knew I couldn't cope coming home and needed that break from my son...so it is weird how hospital is a relief at the beginning and then you get sick of it after a while...shows that you are ready to go home.
The cut looks great. The bruising is already fading. It looks less bruised than when I had my c-section with Isaac 5 years ago....same place and all. Amazing. I was amazed at how well my body handled the procedure. No bleeding out and no haemaglobin drop and platelets higher and stable all week!
Isaac is really glad to have me home. He was becoming teary with me in the hospital and said to me today, "when I wake up in the morning and check your bed, you will be lying there, sleeping! You will still be home!"....he had a great smile on his face.
He has a week until he starts school for the first time. I need to get the rest of his uniform from order. He is only a little guy and we had to order it. I really hope it all arrives in time. We also have to get his school shoes and hat. Hmmm...left it late you think? Hopefully Alan can take me out in the wheelchair to help look for shoes. I have no idea how much I can handle this week but at least Isaac will feel secure this week with me home and hopefully become excited about school. He still states that he doesn't want to go. I know he will enjoy it. I think he is nervous and he doesn't like the idea of leaving me at home but he will see that this is all normal for kids his age and this is what happens and mummy will be there to pick him up and talk to him about his day
I will be taking it easy this week even though there is school to organise. Alan will help with a lot of it.
I wanted to thank Ouma and Oupa, Nanna and Puppa and Danielle our dear Nanny to Isaac and friend to us for helping with Isaac this week while I was in hospital. It made it easier for Alan and I and I am sure it also made it easier on Isaac even though some days he was quite teary and just wanted to be with Alan and I.
Where from here...just recovering and the usual FA surveillance that I am due. Bone marrow biopsy/aspiration and MRI for head and neck cancer. With this surgery I also had all my gynae surveillance....hysteroscopy and pap smear.
Thanks for all your encouragement and messages.
Love Charisse
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