Niamh is having a lovely time at home. She is feeling so much better. The sickness seems to have gone for now. She is able to cope with boluses (instead of continuous feeds). Now that she is on full feeds, she hopefully will put on a little bit of weight before starting the next round. The oncologist has mentioned a few times that a healthy weight helps cope with the treatment.
Niamh has been a lot more alert over the last few days, very sharp at times. She has been very keen on improving her walking. She wants to be able to do it by herself. The physio came yesterday morning and she was very happy with her progress. Niamh is now able to stand up from sitting on her own and she can also lean down to pick something up from the floor. A bit hard on the knees, but she gets there (still holding on to my hand though).
Despite our encouragement, she hasn't been interested in trying food. Hoping she will before we go back in next week.
As far as her communication is concerned, it is still quite tricky. She is trying hard. She is able to make sounds which is a start they say. She communicates quite well with signs, not specially the Makathon signs, more signs that she is making up herself. Yesterday she pointed at the trampoline and started bouncing on the sofa. Message was clear.
Niamh is still on gcsf. Today should be the last injection.
Her blood counts yesterday were:
Hb - 9.5.
WCC - 4.3.
Platelets - 98.
Neutrophils - 3.
She will have another blood test on Friday. Hopefully she will not need any more platelets then and will be able to start cycle 5 on Monday.
Niamh enjoyed seeing all her grandparents yesterday. She is so happy when she sees them, she likes to show them what she can do.
Wednesday, 30 March 2011
Sunday, 27 March 2011
Cycle 4 - Day 26
Niamh needed platelets today, they had gone down to 39. Even though we expected it, we can't help but be a little disappointed as this means that cycle 5 will now be postponed, most likely to Monday in a week, ie. further delay in her treatment. On a positive side, it does mean that Niamh may have a week at home (if no fever) and also it gives her tummy a chance to recover a little.
Niamh has had a nice day today, she really enjoyed going on the swings in the garden. She has spent quite a bit of time outside which is nice. She was not too impressed by our family trip out to Ward 15 this afternoon for a platelet transfusion. She particularly did not like the gcsf injection. We don't know yet if this was the last one for this cycle or if she will have another one tomorrow. Her neutrophils today were 0.8, so still quite low. She has now been having gcsf injections every day for the last 13 days. She's had enough!
Niamh has been doing well with her feeds. She hasn't been sick since yesterday lunchtime and her Ng tube is 48 hours old!!!
Niamh has had a slight fever since this afternoon. Grrr.
Niamh has had a nice day today, she really enjoyed going on the swings in the garden. She has spent quite a bit of time outside which is nice. She was not too impressed by our family trip out to Ward 15 this afternoon for a platelet transfusion. She particularly did not like the gcsf injection. We don't know yet if this was the last one for this cycle or if she will have another one tomorrow. Her neutrophils today were 0.8, so still quite low. She has now been having gcsf injections every day for the last 13 days. She's had enough!
Niamh has been doing well with her feeds. She hasn't been sick since yesterday lunchtime and her Ng tube is 48 hours old!!!
Niamh has had a slight fever since this afternoon. Grrr.
Saturday, 26 March 2011
Cycle 4 - Day 23 to 25
Hmm, hard to catch up on three whole days but I will try.
Thursday was a good day. Niamh didn't 'sick' at all as Emilie would say. She enjoyed the beautiful British weather, bounced on the trampoline (gentle bounces obviously!), a few goes on the slide. It was a very nice day.
On Friday morning, I took Niamh to the hospital for a full blood count. We expected her to need platelets, but she didn't so we were home by lunchtime. Her counts were:
HB - 11.2.
WCC - 0.3 (starting to recover at last!!).
Platelets - 78 (unfortunately no way to know if they are on the up or down, they may still be going down).
Neutrophils - 0.2.
We then had a very nice and chilled afternoon until the nurse came to do the gcsf injection in her leg. Niamh saw the nurse, started crying and out it came. I unfortunately took most of it (kids!!!). Niamh then had to have gcsf, line dressing change and a new NG tube. Not a great hour. Luckily Emilie arrived then and cheered Niamh up. The ng tube only lasted a couple of hours, out it came again around 6pm. After a new Ng tube, and after watching an excited Emilie get ready for her school Easter disco, Niamh fell asleep peacefully and had a relatively good night.
Today Niamh has been pretty happy on the whole. She has been sick a couple of times, but the tube has miraculously stayed in. Relief!
We've had a lovely evening watching Shrek altogether on the sofa. Emilie reckons her daddy looks like Lord Farquaad (Emilie said it was the hairy tummy). I don't think I have laughed so much in a while!
So the plan:
Niamh will have full blood counts done tomorrow morning by the community nurse. If her platelets are showing signs of recovery, she may start cycle 5 on Monday. If her platelets have gone down and she needs a transfusion, cycle 5 will most likely be postponed to the following week.
And finally the next MRI scan has been booked for 18th April. This may change.
Thursday was a good day. Niamh didn't 'sick' at all as Emilie would say. She enjoyed the beautiful British weather, bounced on the trampoline (gentle bounces obviously!), a few goes on the slide. It was a very nice day.
On Friday morning, I took Niamh to the hospital for a full blood count. We expected her to need platelets, but she didn't so we were home by lunchtime. Her counts were:
HB - 11.2.
WCC - 0.3 (starting to recover at last!!).
Platelets - 78 (unfortunately no way to know if they are on the up or down, they may still be going down).
Neutrophils - 0.2.
We then had a very nice and chilled afternoon until the nurse came to do the gcsf injection in her leg. Niamh saw the nurse, started crying and out it came. I unfortunately took most of it (kids!!!). Niamh then had to have gcsf, line dressing change and a new NG tube. Not a great hour. Luckily Emilie arrived then and cheered Niamh up. The ng tube only lasted a couple of hours, out it came again around 6pm. After a new Ng tube, and after watching an excited Emilie get ready for her school Easter disco, Niamh fell asleep peacefully and had a relatively good night.
Today Niamh has been pretty happy on the whole. She has been sick a couple of times, but the tube has miraculously stayed in. Relief!
We've had a lovely evening watching Shrek altogether on the sofa. Emilie reckons her daddy looks like Lord Farquaad (Emilie said it was the hairy tummy). I don't think I have laughed so much in a while!
So the plan:
Niamh will have full blood counts done tomorrow morning by the community nurse. If her platelets are showing signs of recovery, she may start cycle 5 on Monday. If her platelets have gone down and she needs a transfusion, cycle 5 will most likely be postponed to the following week.
And finally the next MRI scan has been booked for 18th April. This may change.
Wednesday, 23 March 2011
Cycle 4 - Day 22
Niamh had a good night and her temperature stayed under 38. Relief. One of the doctors came to see us in the morning to say that Niamh needed blood today. She said they hadn't quite decided whether she could go home today or not but they would after the blood transfusion. They were waiting for the results of her CRP, which is an indicator of infection and also they wanted to monitor her temperature a little longer.
The CRP should be between 0 and 10. On Monday it was 25, which confirmed an infection, yesterday it had risen to 67 and today it is back down to 27. They were pleased. Her temperature has remained under 38 all day. These two factors together with the fact that Niamh has been very well all day meant that they were happy to discharge Niamh this evening. Shame it wasn't earlier as I was told the weather was fantastic today. Hopefully it will be the same tomorrow.
Niamh has been very happy all day. One small vomit around 4pm, but that was kind of expected as she had been bouncing up and down with Emilie for ages whilst feeding.
They are hoping to start Cycle 5 on Monday.
Blood Counts today:
HB - 7.
WCC - 0.1.
Platelets - 198.
Neutrophils - 0.
CRP - 27.
A couple of songs the girls enjoy. Not sure where Emilie gets her dance move from. Niamh loves it.
The CRP should be between 0 and 10. On Monday it was 25, which confirmed an infection, yesterday it had risen to 67 and today it is back down to 27. They were pleased. Her temperature has remained under 38 all day. These two factors together with the fact that Niamh has been very well all day meant that they were happy to discharge Niamh this evening. Shame it wasn't earlier as I was told the weather was fantastic today. Hopefully it will be the same tomorrow.
Niamh has been very happy all day. One small vomit around 4pm, but that was kind of expected as she had been bouncing up and down with Emilie for ages whilst feeding.
They are hoping to start Cycle 5 on Monday.
Blood Counts today:
HB - 7.
WCC - 0.1.
Platelets - 198.
Neutrophils - 0.
CRP - 27.
A couple of songs the girls enjoy. Not sure where Emilie gets her dance move from. Niamh loves it.
Tuesday, 22 March 2011
Cycle 4 - Day 21
Niamh vomited her tube last night around 10pm. We decided to wait till the morning to pass a new tube. She has been on IV fluids since we were admitted so they were just increased to make sure she does not get dehydrated.
The night was okay, she woke up a few times and seemed uncomfortable but on the whole she was fine. Her temperature was stable, around 37.
She seemed happy this morning. We were moved to Ward 9 in late morning as Ward 10 had new admissions. Niamh has settled well in the new ward and has been enjoying the attention from the friendly nurses. She did lots of playing this afternoon.
Unfortunately we are having a bit of a Ng tube nightmare again. She had a new tube at 8.30am, it came out again at 4.30pm, a new tube again at 6.30pm and that one has come out again. She is not even on full feeds.
Also she is having a lot of soiled nappies, most likely as a result of the antibiotics. Her bottom is very sore once again despite having changed her nappy every 30 minutes at times.
Her temperature seems to be creeping back up as well this evening. The nurses are keeping a close eye on it. It hasn't reached 38 yet.
Niamh also needed more platelets today and had a transfusion late afternoon.
Blood Counts:
HB - 8.6.
WCC - 0.
Platelets - 49.
Neutrophils - 0.
CRP - 65.
Hoping her White cells recover over the next few days.
On the positive side, Niamh's head is looking very well at the moment, no bump. The shunt seems to be working once again.
The night was okay, she woke up a few times and seemed uncomfortable but on the whole she was fine. Her temperature was stable, around 37.
She seemed happy this morning. We were moved to Ward 9 in late morning as Ward 10 had new admissions. Niamh has settled well in the new ward and has been enjoying the attention from the friendly nurses. She did lots of playing this afternoon.
Unfortunately we are having a bit of a Ng tube nightmare again. She had a new tube at 8.30am, it came out again at 4.30pm, a new tube again at 6.30pm and that one has come out again. She is not even on full feeds.
Also she is having a lot of soiled nappies, most likely as a result of the antibiotics. Her bottom is very sore once again despite having changed her nappy every 30 minutes at times.
Her temperature seems to be creeping back up as well this evening. The nurses are keeping a close eye on it. It hasn't reached 38 yet.
Niamh also needed more platelets today and had a transfusion late afternoon.
Blood Counts:
HB - 8.6.
WCC - 0.
Platelets - 49.
Neutrophils - 0.
CRP - 65.
Hoping her White cells recover over the next few days.
On the positive side, Niamh's head is looking very well at the moment, no bump. The shunt seems to be working once again.
Monday, 21 March 2011
Cycle 4 - Day 20
As expected Niamh's temperature rose in the night. She woke up at 3am, vomited, tube out. Her temperature was 38.8. We got to A and E around 4am. It was nice and quiet so we got seen very quickly. She is on the usual very strong antibiotics, gentamicin and tazocin. At this stage we don't know where is the infection and possibly never will. Her temperature is down this evening so hopefully the antibiotics are working.
We were admitted to Ward 10, the neurosurgical ward (where we started)around 6am. Niamh was tired but felt better thanks to the wonderful calpol. She was v happy to see in the bed opposite her, her good friend Hifsa. Emilie was also v happy when she came to play this afternoon. Hifsa and Emilie had a lovely time. Having not seen Hifsa for a few weeks, I had hoped she was home with her family. I am finding it difficult seeing her weakened from a recent surgery (not brain).
Niamh on the whole had a good day. She was sick again at lunchtime, so so far two tubes today. She is struggling a little with her poos and complains of lower back pain. The doctors think it is related to her passing stools.
The consultant is planning her next MRI for the end of cycle 5, prior to the scary cycle 6.
Blood Counts:
HB - 11.2.
WCC - <0.1.
Platelets - 96.
Neutrophils - 0.
CRP - 25.
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We were admitted to Ward 10, the neurosurgical ward (where we started)around 6am. Niamh was tired but felt better thanks to the wonderful calpol. She was v happy to see in the bed opposite her, her good friend Hifsa. Emilie was also v happy when she came to play this afternoon. Hifsa and Emilie had a lovely time. Having not seen Hifsa for a few weeks, I had hoped she was home with her family. I am finding it difficult seeing her weakened from a recent surgery (not brain).
Niamh on the whole had a good day. She was sick again at lunchtime, so so far two tubes today. She is struggling a little with her poos and complains of lower back pain. The doctors think it is related to her passing stools.
The consultant is planning her next MRI for the end of cycle 5, prior to the scary cycle 6.
Blood Counts:
HB - 11.2.
WCC - <0.1.
Platelets - 96.
Neutrophils - 0.
CRP - 25.
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Sunday, 20 March 2011
Cycle 4 - Day 18 & 19
We have had a nice weekend, mostly at home. The girls enjoyed the good weather yesterday and spent quite a bit of time in the garden. Today we had to take a trip out to the hospital for a platelet transfusion. Not the best way to spend your Sunday afternoon but it was needed as Niamh's platelets had gone down to 27.
We have had a few vomits this weekend and a few Ng tubes. 9 or 10pm seems to be her usual time.
A bit concerned as her temperature continues to fluctuate but seems on the higher side this evening. We are reaching 37.8. Hoping we don't have to go to A&E during the night, but it is looking very possible at this stage.
Niamh's Blood Counts today:
Haemoglobin - 10.9.
White Cells - <0.1.
Platelets - 27.
Neutrophils - 0.
We have had a few vomits this weekend and a few Ng tubes. 9 or 10pm seems to be her usual time.
A bit concerned as her temperature continues to fluctuate but seems on the higher side this evening. We are reaching 37.8. Hoping we don't have to go to A&E during the night, but it is looking very possible at this stage.
Niamh's Blood Counts today:
Haemoglobin - 10.9.
White Cells - <0.1.
Platelets - 27.
Neutrophils - 0.
Friday, 18 March 2011
Cycle 4 - Day 17
A long day in the oncology clinic. We got there for 10am and left at 6pm! Niamh didn't need platelets as expected but needed a blood transfusion. It takes a couple of hours for the cross matching and then four hours for the transfusion so we were there for ever!
Niamh was very happy this morning and still quite excited. It was hard to believe that her haemoglobin level had gone done to 6.6. They usually transfuse when it gets to 8. Not sure where she is getting the energy from. (Normal values are between 11 and 12.5).
She was sick around lunchtime. The doctor says having low haemoglobin levels can make you feel a bit sicky.
At 2pm, she had new tube and gcsf. By then she gave in and went to sleep. She slept for 3 hours.
By the time we got home she was very happy and smily. She is still struggling to get to sleep now. After a 3 hour nap and a blood transfusion, she's ready to party!
Blood Counts today:
Hb - 6.6. (Normal values 11 to 12.5)
WCC - 0.1. (Normal values 5 to 16)
Platelets - 69. (Normal values 150 to 400)
Neutrophils - 0. (Normal values 1.5 to 7.0)
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Niamh was very happy this morning and still quite excited. It was hard to believe that her haemoglobin level had gone done to 6.6. They usually transfuse when it gets to 8. Not sure where she is getting the energy from. (Normal values are between 11 and 12.5).
She was sick around lunchtime. The doctor says having low haemoglobin levels can make you feel a bit sicky.
At 2pm, she had new tube and gcsf. By then she gave in and went to sleep. She slept for 3 hours.
By the time we got home she was very happy and smily. She is still struggling to get to sleep now. After a 3 hour nap and a blood transfusion, she's ready to party!
Blood Counts today:
Hb - 6.6. (Normal values 11 to 12.5)
WCC - 0.1. (Normal values 5 to 16)
Platelets - 69. (Normal values 150 to 400)
Neutrophils - 0. (Normal values 1.5 to 7.0)
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Thursday, 17 March 2011
Cycle 4 - Day 16
Another lovely day at home. Niamh still making great progress. :)
Temperature has been stable.
Oncology clinic tomorrow morning for some platelets and hopefully back home after.
Temperature has been stable.
Oncology clinic tomorrow morning for some platelets and hopefully back home after.
Wednesday, 16 March 2011
Cycle 4 - Day 15
Niamh has been very happy, very cheeky and very excited all day today. She is Miss Independent at the moment. She still can't talk but she can clearly communicate that SHE can do it, whatever it is, all by herself.
She had a good physio session this morning with Claire. She did some good cruising along the sofa and various other exercises. When Claire stretched her legs, Niamh did not get upset like last week. She now wears the right splint only and that seems to work fine for her. The left leg doesn't need the extra support.
Despite all this happiness and energy, Niamh had a mild temperature all afternoon. Luckily it remained under 38 so we did not have to go to the hospital. I have just checked her temperature now and it seems back to under 37. Phew.... Really didn't fancy being back at the hospital just yet. Niamh is likely to be neutropenic (no immune system) over the next couple of days. We have to check her temperature regularly as she is prone to infections. If she reaches 38, we have to take her into hospital for antibiotics (ie. a few nights).
She had a good physio session this morning with Claire. She did some good cruising along the sofa and various other exercises. When Claire stretched her legs, Niamh did not get upset like last week. She now wears the right splint only and that seems to work fine for her. The left leg doesn't need the extra support.
Despite all this happiness and energy, Niamh had a mild temperature all afternoon. Luckily it remained under 38 so we did not have to go to the hospital. I have just checked her temperature now and it seems back to under 37. Phew.... Really didn't fancy being back at the hospital just yet. Niamh is likely to be neutropenic (no immune system) over the next couple of days. We have to check her temperature regularly as she is prone to infections. If she reaches 38, we have to take her into hospital for antibiotics (ie. a few nights).
Tuesday, 15 March 2011
Cycle 4 - Day 14
Niamh had a good night sleep but woke up at the very ridiculous time of 5.30am! It has been a long day. I think we were getting more sleep when the girls were newly born. Anyway.....
Niamh enjoyed her morning at home, lots of moving around, lots of playing and lots of giggling which is nice. She made me laugh when we were playing skittles and I dared to knock a couple. I quickly understood that I could only play if I did not knock the skittles down, only she could. I must say she is excellent at it. Obviously competitive like her sister (hmm wonder where they get that from!).
She had a quick nap around lunchtime, unfortunately woke up and vomited, ng tube out.
We got to the oncology clinic around 1.30pm, the nurses were quite quick at doing her blood test. An hour later we found out that her platelets had gone down to 39. The threshold is 50 so she had to have platelets. She also had a new Ng tube and her first gcsf injection. Then at 5pm, we got to leave the hospital. She was soooooo happy to leave.
She has had a lovely evening, very excited about being reunited with her sister. She spent most of the evening wanting to do the actions for the song 'J'ai perdu le do de ma clarinette' which Auntie Caitlin has been teaching her.
Her blood counts today are:
Haemoglobin - 8.8.
White Cells - 2.1.
Platelets - 39.
Neutrophils - 1.9.
The doctor is ordering more platelets for Friday as they only live for two days in the body. She may need a blood transfusion later in the week too.
Niamh enjoyed her morning at home, lots of moving around, lots of playing and lots of giggling which is nice. She made me laugh when we were playing skittles and I dared to knock a couple. I quickly understood that I could only play if I did not knock the skittles down, only she could. I must say she is excellent at it. Obviously competitive like her sister (hmm wonder where they get that from!).
She had a quick nap around lunchtime, unfortunately woke up and vomited, ng tube out.
We got to the oncology clinic around 1.30pm, the nurses were quite quick at doing her blood test. An hour later we found out that her platelets had gone down to 39. The threshold is 50 so she had to have platelets. She also had a new Ng tube and her first gcsf injection. Then at 5pm, we got to leave the hospital. She was soooooo happy to leave.
She has had a lovely evening, very excited about being reunited with her sister. She spent most of the evening wanting to do the actions for the song 'J'ai perdu le do de ma clarinette' which Auntie Caitlin has been teaching her.
Her blood counts today are:
Haemoglobin - 8.8.
White Cells - 2.1.
Platelets - 39.
Neutrophils - 1.9.
The doctor is ordering more platelets for Friday as they only live for two days in the body. She may need a blood transfusion later in the week too.
Monday, 14 March 2011
Cycle 4 - Day 13
Niamh had a very lovely day at home. She did need a new Ng tube this morning (small vomit in the early hours) but has been fine so far throughout the day. Her feed is now on 30ml an hour, a slight improvement on the last few days.
Niamh has had lots of energy today (more than I, I think), very playful and very cheeky. She has been particularly enjoying her auntie's funny songs/dances.
We will go to the Oncology clinic at the Hospital tomorrow afternoon as Niamh needs to have blood test, her first gcsf injection and possibly some platelets. We are expecting her blood counts to drop in the next few days as they did for cycle 2.
Niamh has had lots of energy today (more than I, I think), very playful and very cheeky. She has been particularly enjoying her auntie's funny songs/dances.
We will go to the Oncology clinic at the Hospital tomorrow afternoon as Niamh needs to have blood test, her first gcsf injection and possibly some platelets. We are expecting her blood counts to drop in the next few days as they did for cycle 2.
Sunday, 13 March 2011
Cycle 4 - Day 12
We are home!
Niamh had a nice evening last night, she fell asleep watching Little Bear around 9.30pm. The nurse came around 10pm to do some obs and for a nappy. When Niamh is on a lot of fluids as she has been over the last few days, nappies have to be changed very regularly and weighed to check her fluid balance. Unfortunately the nappy change didn't go too well, Niamh woke up and was sick everywhere. After a good wash and in a nice clean bed, Niamh ended up having a lovely night sleep. I must admit, if there is to be a vomit in the night, 10pm is a much kinder time than 3 in the morning.
Niamh had a new Ng tube put in first thing this morning. The nurse insisted on doing it even though Niamh was asking me to do it. A little frustrating as Niamh is usually calmer when we do it and gets over it much quicker.
Niamh was happy and smiley all morning, she got a little tired in the afternoon but was fine again after her sleep, specially once Emilie had arrived. She was very very very happy when we talked about going home and even more waving goodbye to everyone.
Niamh has been on very low feed all day, 15ml per hour. She had a very small vomit around 4pm, tube stayed in, and another small vomit once we got home, tube out (daddy's driving!).
The neurosurgeons came to check on her this morning as now we have two bumps to worry about. There is some fluid on the top as before but also on the left where they made a small incision to pass one of the catheter. It is possible that it is worse today because of all the fluids she has been having over the last few days. The neurosurgeons were not concerned, unfortunately we still are.
We are waiting for the oncologist to decide when Niamh will start the gcsf, injection in her leg which helps speed up the recovery of her white cells. It is likely to start on Tuesday or Wednesday.
Niamh's counts today were:
Haemoglobin - 8.8.
White Cells - 1.1.
Platelets - 76.
Neutrophils - 0.9.
Niamh had a nice evening last night, she fell asleep watching Little Bear around 9.30pm. The nurse came around 10pm to do some obs and for a nappy. When Niamh is on a lot of fluids as she has been over the last few days, nappies have to be changed very regularly and weighed to check her fluid balance. Unfortunately the nappy change didn't go too well, Niamh woke up and was sick everywhere. After a good wash and in a nice clean bed, Niamh ended up having a lovely night sleep. I must admit, if there is to be a vomit in the night, 10pm is a much kinder time than 3 in the morning.
Niamh had a new Ng tube put in first thing this morning. The nurse insisted on doing it even though Niamh was asking me to do it. A little frustrating as Niamh is usually calmer when we do it and gets over it much quicker.
Niamh was happy and smiley all morning, she got a little tired in the afternoon but was fine again after her sleep, specially once Emilie had arrived. She was very very very happy when we talked about going home and even more waving goodbye to everyone.
Niamh has been on very low feed all day, 15ml per hour. She had a very small vomit around 4pm, tube stayed in, and another small vomit once we got home, tube out (daddy's driving!).
The neurosurgeons came to check on her this morning as now we have two bumps to worry about. There is some fluid on the top as before but also on the left where they made a small incision to pass one of the catheter. It is possible that it is worse today because of all the fluids she has been having over the last few days. The neurosurgeons were not concerned, unfortunately we still are.
We are waiting for the oncologist to decide when Niamh will start the gcsf, injection in her leg which helps speed up the recovery of her white cells. It is likely to start on Tuesday or Wednesday.
Niamh's counts today were:
Haemoglobin - 8.8.
White Cells - 1.1.
Platelets - 76.
Neutrophils - 0.9.
Cycle 4 - Day 11
Niamh woke up in a very happy smiley mood this morning, everyone our bay kept saying what a lovely smile she has. She also woke up tubeless after a little vomit in the night. So first job of the day was to place a new NG tube, Helene and I are assessed to do this now, but the nurses wanted to do it today. It went relatively smoothly, but it took 20 minutes or so for Niamh's smile to return.
First we did some little car around the ward and then some walking, from our bay to the play room. I have to support Niamh a lot but she is definitely getting stronger with her walking. Niamh's nurse was very nice and helped us with pushing the drip stand.
Niamh had visitors this morning and this afternoon and she loved to spend time with them. She was quite cheeky all day and admitted it. Normally she says daddy is cheeky, but today she was happy to take responsibility.
We had a big vomit at lunch time in the middle of her sleep, but really it is to be expected. We've lowered the rate her feed goes in to just 15 ml an hour, 3 teaspoons. Hopefully that will help.
In the evening we had a nice time all together with Emilie and Hélène.
Hopefully home tomorrow evening when her hydration ends (she's on a lot of intravenous fluid during the cyclophosphamide to protect her bladder). It will depend on Niamh's blood counts.
Niamh's counts today were:
Haemoglobin - 9.1.
White Cells - 1.4.
Platelets - 79.
Neutrophils - 1.1.
First we did some little car around the ward and then some walking, from our bay to the play room. I have to support Niamh a lot but she is definitely getting stronger with her walking. Niamh's nurse was very nice and helped us with pushing the drip stand.
Niamh had visitors this morning and this afternoon and she loved to spend time with them. She was quite cheeky all day and admitted it. Normally she says daddy is cheeky, but today she was happy to take responsibility.
We had a big vomit at lunch time in the middle of her sleep, but really it is to be expected. We've lowered the rate her feed goes in to just 15 ml an hour, 3 teaspoons. Hopefully that will help.
In the evening we had a nice time all together with Emilie and Hélène.
Hopefully home tomorrow evening when her hydration ends (she's on a lot of intravenous fluid during the cyclophosphamide to protect her bladder). It will depend on Niamh's blood counts.
Niamh's counts today were:
Haemoglobin - 9.1.
White Cells - 1.4.
Platelets - 79.
Neutrophils - 1.1.
Friday, 11 March 2011
Cycle 4 - Day 10
Niamh had a relatively good night sleep last night, all ready for her few days in hospital.
The car journey to the hospital went well, Niamh seemed happy enough. But by the time she came out of the car, she didn't look happy anymore. We know the signs now. Quick get into pushchair, grab sick bowl (which I had miraculously packed), just on time for the vomit/ng tube out! Luckily we were on a deserted street, the weather was lovely and mild and all the sick went into the bowl. It could have been a very tricky affair. In the end we walked away with a calm and clean Niamh.
We made our way to Ward 15. Niamh was very happy again, feeling much better. She had a busy afternoon. Speech and language therapist came for a while and then physio with Louisa. For the first time on Ward 15, she walked around the corridors holding my hands. She was glowing with pride. Louisa was very pleased to see her progress.
The neurosurgeons came to check on her too. No concern at the moment, we just need to keep an eye on the fluid/bump. It has been stable all week.
The oncologist came at the end of the day and said that he will book an MRI Scan for the end of Cycle 5, so towards the end of April.
As far as her chemo is concerned, Niamh had the Cyclophosphamide this evening, it is given over an hour, and she had her last dose of Etoposide. She will have another dose of Cyclophosphamide tomorrow and then that's it for Cycle 4.
She will need to stay in hospital till Sunday afternoon/evening as she needs to remain on fluids till then.
Niamh's counts today were:
Haemoglobin - 10.
White Cells - 2.6..
Platelets - 98.
Neutrophils - 2.1.
The car journey to the hospital went well, Niamh seemed happy enough. But by the time she came out of the car, she didn't look happy anymore. We know the signs now. Quick get into pushchair, grab sick bowl (which I had miraculously packed), just on time for the vomit/ng tube out! Luckily we were on a deserted street, the weather was lovely and mild and all the sick went into the bowl. It could have been a very tricky affair. In the end we walked away with a calm and clean Niamh.
We made our way to Ward 15. Niamh was very happy again, feeling much better. She had a busy afternoon. Speech and language therapist came for a while and then physio with Louisa. For the first time on Ward 15, she walked around the corridors holding my hands. She was glowing with pride. Louisa was very pleased to see her progress.
The neurosurgeons came to check on her too. No concern at the moment, we just need to keep an eye on the fluid/bump. It has been stable all week.
The oncologist came at the end of the day and said that he will book an MRI Scan for the end of Cycle 5, so towards the end of April.
As far as her chemo is concerned, Niamh had the Cyclophosphamide this evening, it is given over an hour, and she had her last dose of Etoposide. She will have another dose of Cyclophosphamide tomorrow and then that's it for Cycle 4.
She will need to stay in hospital till Sunday afternoon/evening as she needs to remain on fluids till then.
Niamh's counts today were:
Haemoglobin - 10.
White Cells - 2.6..
Platelets - 98.
Neutrophils - 2.1.
Thursday, 10 March 2011
Cycle 4 - Day 9
Another lovely day at home. Niamh has been very happy today, a lot of climbing, crawling and walking. Even though she is refusing to wear her splints, she seems to be able to stand and walk quite straight, with assistance. We are very impressed with her progress.
Niamh is getting more and more independent: she wants to go up the stairs on her own, get dressed on her own, climbed into bed on her own, etc....
Also, for the first time in probably 6 months, she decided to wind her sister up. Not sure Emilie enjoyed it much. Whilst tricky to manage, it is reassuring that she is behaving like a 2 year old with an older sibling.
No vomiting since yesterday lunchtime. Admittedly she hasn't been on full feeds since then.
Back in hospital tomorrow for three days. :(!
Wednesday, 9 March 2011
Cycle 4 - Day 8
A busy day today. The speech and language therapist Jo came at 9am. She did some fun communication work with Niamh. For one of the activities Niamh played soft music to put Jo to sleep. Once Jo was asleep, Niamh made a sound to wake her up (she loved that bit, especially when Jo would wake up and make her laugh). Then Niamh would do the sign for 'more' and for 'sleeping'. It was fun to watch, Niamh spent most of the session giggling.
Jo was just finishing her session when the physio Claire arrived. Niamh was a little tired then but she was still very keen to show off her climbing up the stairs. Claire was pleased as it was going to be the challenge of the day. Niamh was reluctant once again to put the splints on so Claire focussed on hand and arm movements which Niamh did well. The stretching of the legs/ankles at the end was a bit painful. Niamh made it clear then that she had had enough. To be fair, it was a busy morning for a little one who was up since 6am.
After a very very short sleep this afternoon, Niamh has had a lovely afternoon/evening playing and doing things with Emilie. Whatever Emilie does, Niamh wants to do.
Niamh has been sick twice today so far. Once at 6am and once early afternoon. She obviously wanted me to be signed off to put Ng tubes. The community nurses and Ward 15 nurses are going to be pleased.
Tuesday, 8 March 2011
Cycle 4 - Day 6 and 7
We have had a lovely couple of days, partly thanks to the beautiful weather. It is so nice taking Niamh out for walks, especially as she will spend most of the spring in hospital. She really enjoys going to get Emilie from school.
Niamh is making good progress with her motor skills once again. A physio came yesterday to assess her physical abilities. She will be coming back tomorrow morning for a session. Niamh did a lot of crawling and climbing today; she particularly likes climbing up the stairs. Great exercise. She also did well with her walking and standing. For some reasons she doesn't like wearing her splints anymore. They seem to hurt her feet. Need to investigate ...
As far as chemo drugs are concerned, Niamh had her last dose of temozolide on Sunday night, she is now on oral etoposide only until Friday. Then Cyclophosphamide.
Niamh was sick three times yesterday and once today so far. I am now almost assessed to pass Ng tubes, I have done two, one more to go before I get signed off. Both of us being assessed will make life easier. We had been told that children are usually calmer when their parents pass the ng tube, and it is true. She does cry a little but it is a lot less traumatic than it used to be.
Sunday, 6 March 2011
Cycle 4 - Day 5
Niamh slept well, except for a quick (well, 1 - 2 hours of missed sleep) vomit and NG tube replacement. NG tube was the easiest yet, she seemed to really want it to be replaced so she could have some water.
This morning the pressure in here head seemed raised when looking at the size of her bump, though this did reduce during the day. She also seemed a bit dazed/sleepy and had a few moments of what I assume was her feeling nauseous. By lunch time we were quite worried about her but she seemed to improve especially after going for a long walk outside in the pushchair. She also had a token play at the playgound. A quick go on the climbing frame, slide and rocking horse.
We met friends which was nice and it really felt like spring was arriving. We spent a bit of time in the garden and Niamh had a long go on the swing and enjoyed sitting in the play den.
This evening she looked very tired and fell asleep at 5.30. We hope she sleeps tonight....
Tonight is the last time she will have Temozolomide during this course of chemotherapy. She will have Etoposide every day till Friday.
This morning the pressure in here head seemed raised when looking at the size of her bump, though this did reduce during the day. She also seemed a bit dazed/sleepy and had a few moments of what I assume was her feeling nauseous. By lunch time we were quite worried about her but she seemed to improve especially after going for a long walk outside in the pushchair. She also had a token play at the playgound. A quick go on the climbing frame, slide and rocking horse.
We met friends which was nice and it really felt like spring was arriving. We spent a bit of time in the garden and Niamh had a long go on the swing and enjoyed sitting in the play den.
This evening she looked very tired and fell asleep at 5.30. We hope she sleeps tonight....
Tonight is the last time she will have Temozolomide during this course of chemotherapy. She will have Etoposide every day till Friday.
Saturday, 5 March 2011
Cycle 4 - Day 4
The neuro surgeons have adjusted Niamh's shunt to 0.5 instead of 1.5 and this seems to have helped reduce the size of the bump on her head.
Last night and this morning were really nice. Niamh had been moved into Bay 4 (The high roller suite) while Bay 3 is being spring cleaned. It was only us in a room big enough for 4 beds. There is a big screen TV and DVD player and several big purple armchairs. We bought pizza and chips (I was the closest shop) for dinner and all sat together to eat.
When Emilie, Caitlin and Helene had gone. Niamh and I just cuddled up on the chair and watched dvds till late. When I finally convinced her to get to bed, she was still keen to try a jigsaw until she dropped off to sleep about 11. She was really trying to talk even though I couldn't understand a word she was trying to say.
Niamh slept fantastically and in the morning we just pottered about our suite watching Tweenies, enjoying visitors and getting ready to go home.
In the afternoon we went home and unfortunately Niamh vomited the moment she sat on the sofa. Later she was OK, she enjoyed eating some prawn crackers which is a first since she was diagnosed. You definitely get the feeling she wants to get more involved with food when we are all eating.
It's great to be home again but we are a bit worried about the pressure in her head. I don't know whether we'll ever be free of this particular worry.
Last night and this morning were really nice. Niamh had been moved into Bay 4 (The high roller suite) while Bay 3 is being spring cleaned. It was only us in a room big enough for 4 beds. There is a big screen TV and DVD player and several big purple armchairs. We bought pizza and chips (I was the closest shop) for dinner and all sat together to eat.
When Emilie, Caitlin and Helene had gone. Niamh and I just cuddled up on the chair and watched dvds till late. When I finally convinced her to get to bed, she was still keen to try a jigsaw until she dropped off to sleep about 11. She was really trying to talk even though I couldn't understand a word she was trying to say.
Niamh slept fantastically and in the morning we just pottered about our suite watching Tweenies, enjoying visitors and getting ready to go home.
In the afternoon we went home and unfortunately Niamh vomited the moment she sat on the sofa. Later she was OK, she enjoyed eating some prawn crackers which is a first since she was diagnosed. You definitely get the feeling she wants to get more involved with food when we are all eating.
It's great to be home again but we are a bit worried about the pressure in her head. I don't know whether we'll ever be free of this particular worry.
Friday, 4 March 2011
Cycle 4 - Day 3
Niamh had a good night and woke up relatively happy. We went up to Ward 10 late morning for the stitches in her head to be removed. One the neurosurgeons had a look at her bump. He was not too worried about it but said he would check with Mr Kay, the consultant.
In the afternoon Niamh complained of lower back pain again. Amazingly she showed the doctor exactly where it hurt. The doctor said it may either be related to her passing stools or she may have pulled a muscle. She was not concerned.
On the whole Niamh was okay, she enjoyed going around the ward in her pushchair and seeing everyone. She did not want to do much playing today, she seemed to struggle with her concentration once again. She also struggled to stand straight.
Mr Kay, the neuro consultant, came to see us at the end of the day. He was very kind and reassuring. I explained that the week after the second shunt Niamh had made fantastic progress, her alertness and concentration were almost the same as pre diagnosis. However over the last couple of days things seem to be regressing again, possibly suggesting more pressure in her brain.
Mr Kay explained that it was very reassuring to hear that Niamh had made so much progress after the second shunt and that it showed that once all is over, we can hopefully get our little girl back to how she used to be. He said that the most important thing now is for her to complete her treatment. It may be that the shunt is malfunctioning, or partially blocked or simply may need a different setting. He said that we know that Niamh can cope with a large amount of pressure in her brain. This has helped her a lot through the last few months and should help over the next few months. He said they would change the setting of the shunt with a magnetic device from 1.5 to 0.5. The extra fluid should hopefully drain. He says they have no reason to intervene surgically at this stage as she is clinically well.
Mr Kay is happy for Niamh to continue with Cycle 4. He has asked us however to be vigilant and bring her back to Ward 10 if we have any concerns.
Mr Kay added that Niamh is a very resilient little girl and that she is coping amazingly well with everything she has been through.
Niamh may be able to go home tomorrow. If all goes well, she will be back in hospital next Friday for three days for the Cyclophosphamide, one of the chemo drugs that needs to be given intravenously with a lot of fluids.
Thursday, 3 March 2011
Cycle 4 - Day 2
A bit of a difficult day.
Niamh was sick last night about 90 mins after the chemo drugs. It lasted about 50 minutes and at the end she vomited a bit of old blood.
We were very concerned about it but the doctors don't seem too worried. They have prescribed ranitidine, an anti acid and some anti sickness medicine.
Niamh was okish during the day but still seems to have some pain or discomfort somewhere. Still no idea where it is coming from.
To make us worry more Niamh's bump on her head is reappearing. It is possible that she has some more pressure in her head that is causing this.
We are hoping to see the neurosurgeons tomorrow so they can advise.
The oncologist is concerned about it as we have now started cycle 4. He says that we may need to stop cycle 4 and start again once it is resolved. Hopefully it won't come to that.
So big prayers tonight that the bump will have disappeared in the morning.
We are now back on ward 15. Niamh has enjoyed a few rounds in the little car. She seems very happy to be out of the room in ward 6.
Niamh was sick last night about 90 mins after the chemo drugs. It lasted about 50 minutes and at the end she vomited a bit of old blood.
We were very concerned about it but the doctors don't seem too worried. They have prescribed ranitidine, an anti acid and some anti sickness medicine.
Niamh was okish during the day but still seems to have some pain or discomfort somewhere. Still no idea where it is coming from.
To make us worry more Niamh's bump on her head is reappearing. It is possible that she has some more pressure in her head that is causing this.
We are hoping to see the neurosurgeons tomorrow so they can advise.
The oncologist is concerned about it as we have now started cycle 4. He says that we may need to stop cycle 4 and start again once it is resolved. Hopefully it won't come to that.
So big prayers tonight that the bump will have disappeared in the morning.
We are now back on ward 15. Niamh has enjoyed a few rounds in the little car. She seems very happy to be out of the room in ward 6.
Wednesday, 2 March 2011
Cycle 4 - day 1
Niamh had an okish night, she woke up a few times in pain or discomfort. She was awake quite early and then fell asleep for the whole morning.
She hasn't had a fever since last night; however she seems to experience pain somewhere every now and then. Once again she won't say where. She had some paracetamol at lunchtime which helped. We ended up having a nice afternoon.
Her CRP is 31 today, it was only 3 yesterday so it shows she is definetely fighting some kind of infections. It would be nice to know where.
She started cycle 4 this evening (after a 3 and a half week delay).
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She hasn't had a fever since last night; however she seems to experience pain somewhere every now and then. Once again she won't say where. She had some paracetamol at lunchtime which helped. We ended up having a nice afternoon.
Her CRP is 31 today, it was only 3 yesterday so it shows she is definetely fighting some kind of infections. It would be nice to know where.
She started cycle 4 this evening (after a 3 and a half week delay).
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Tuesday, 1 March 2011
Antibiotics
38.7, Antibiotics to be prescribed. She will be staying in hospital for at least 48hrs. Let's hope we're home for the weekend.
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Back in hospital
After another great day yesterday, Niamh had a bad night. She had trouble getting herself comfortable to sleep. By the time morning came she was unsettled and very tired.
She had the ct scan at 10.30am and then we went to the oncology clinic as planned. Her temperature then was 37.5. Within a couple of hours it had spiked to 38.4. She seemed very unwell. Not the Niamh we have been used to over the last few days.
As she is not neutropenic at the moment and all her wounds are healing well they decided to give her paracetamol (at 2pm) and wait till the evening to decide whether she will need antibiotics or not. We have been admitted into ward 6 in our own private room (no beds available in ward 15). She has just gone to sleep. Temperature at 6.30pm was 37.5. Hmmm, possibly on the up again unfortunately.
The ct scan was good. It still shows a bit of fluid on each side but a lot less than before and it is not causing pressure so fine for now.
The oncologist would like to start cycle 4 tomorrow. She can still start cycle 4 even if she is on antibiotics.
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She had the ct scan at 10.30am and then we went to the oncology clinic as planned. Her temperature then was 37.5. Within a couple of hours it had spiked to 38.4. She seemed very unwell. Not the Niamh we have been used to over the last few days.
As she is not neutropenic at the moment and all her wounds are healing well they decided to give her paracetamol (at 2pm) and wait till the evening to decide whether she will need antibiotics or not. We have been admitted into ward 6 in our own private room (no beds available in ward 15). She has just gone to sleep. Temperature at 6.30pm was 37.5. Hmmm, possibly on the up again unfortunately.
The ct scan was good. It still shows a bit of fluid on each side but a lot less than before and it is not causing pressure so fine for now.
The oncologist would like to start cycle 4 tomorrow. She can still start cycle 4 even if she is on antibiotics.
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