This is it, Niamh had her last radiotherapy treatment this morning. Before her treatment, the anaesthetists asked her to sit down on one of the sofas and brought her a lovely present. She had hardly opened it that the radiotherapists arrived with more presents nicely wrapped up in 'Peppa Pig' paper. There was definitely a 'Peppa Pig' theme amongst the presents. They have all got to know her well over the last seven weeks. She was also given a lovely laminated 'Peppa Pig' Certificate for being a very brave little girl for the radiotherapy treatments. She was a little overwhelmed but really enjoyed it. They have all been extremely thoughtful and even gave a present for Emilie. A truly fantastic team!
I am sure she will miss them all as they have been so kind to her, but I doubt she will miss the general anaesthetic every morning.
Her blood counts today were a little disappointing:
HB: 10.8 (fine).
WCC: 2.2 (ok, but a bit low).
Platelets: 48 (grrrr, too low again).
Neut: 1.4 (okish but a bit low really).
During treatment her haemoglobin level needed to be maintained above 10. Now that treatment is finished it needs to be maintained above 8. She will hopefully be requiring less blood transfusions.
Platelets however still need to be above 50. I am waiting to hear from the Consultant whether she will have a transfusion today or whether he wants to do another test in a couple of days.
What's next?
Niamh will have a MRI scan in about 6 weeks. No date has yet been confirmed but likely to be around her 3rd birthday.
She will most likely be seen by the Oncology Consultant once a week (Tuesdays most likely) in Clinic. They will also continue to test her blood every week. We, in the meantime, will continue to investigate alternative treatments to increase Niamh's chances of long term survival.
We are hoping to have some quality family time this summer, a few days out and even possibly a holiday. Since Frederic's visit on Tuesday, both girls want to go to France so they can see their cousins and grandparents and go to the beach. Emilie would like to move to France and take her school and friends along with her.
All in all, we are hoping the second half of 2011 will be kinder to Niamh and us all (family and friends). We realise that Niamh's diagnosis nine months ago and her long treatment have caused a lot of pain and sadness to many around us, grandparents, aunties, uncles, cousins, friends and even friends of friends. We thank you all again for your wonderful support and prayers. We would like to ask you to keep Niamh is your prayers as unfortunately her fight is not over yet.
Thursday, 30 June 2011
Sunday, 26 June 2011
Another nice weekend
Niamh is impressing us with her energy level at this stage in her treatment.
Yesterday she was up at 5.45am, baking muffins and cake for Emilie's school fair by 8am. She had a short lie down before going to Emilie's school fair early afternoon. By the time we got home I expected her to have a sleep but no, she wanted to do more hand and foot painting, her new favourite activity (messy business).
Today, up at, hmmm, 5.45am again! She enjoyed playing outside with Emilie this morning. By 10am she asked to go back inside, but was sick before I had a chance to move her. I think she had just started to struggle with the heat and the brightness. We waited till after lunch to pass the NG tube and tried to tempt her with various food, but she had none of it. In the afternoon she was all excited about going to her little friend's birthday party (the girls have more of a social life than we do!!!). She loved every minute of it, especially the assault course. When it was time to sit down for food, she wanted a variety of food in her plate. She seemed a lot keener to try the food than at home with us. She eventually tried to put a grape in her mouth, but it must have felt too strange so she took it out. She was very happy to have a few hugs with her little friends.
She still felt great by the time we got home and went to sleep very happy and peacefully this evening.
She is now looking forward to the visit of Tonton Frederic on Tuesday to show him all her new refound skills.
Four days to go and radiotherapy is over.
Yesterday she was up at 5.45am, baking muffins and cake for Emilie's school fair by 8am. She had a short lie down before going to Emilie's school fair early afternoon. By the time we got home I expected her to have a sleep but no, she wanted to do more hand and foot painting, her new favourite activity (messy business).
Today, up at, hmmm, 5.45am again! She enjoyed playing outside with Emilie this morning. By 10am she asked to go back inside, but was sick before I had a chance to move her. I think she had just started to struggle with the heat and the brightness. We waited till after lunch to pass the NG tube and tried to tempt her with various food, but she had none of it. In the afternoon she was all excited about going to her little friend's birthday party (the girls have more of a social life than we do!!!). She loved every minute of it, especially the assault course. When it was time to sit down for food, she wanted a variety of food in her plate. She seemed a lot keener to try the food than at home with us. She eventually tried to put a grape in her mouth, but it must have felt too strange so she took it out. She was very happy to have a few hugs with her little friends.
She still felt great by the time we got home and went to sleep very happy and peacefully this evening.
She is now looking forward to the visit of Tonton Frederic on Tuesday to show him all her new refound skills.
Four days to go and radiotherapy is over.
Thursday, 23 June 2011
Radiotherapy Days 27 & 28 (5 left to go)
Things are still going relatively smoothly. Niamh had a nice afternoon with Emilie yesterday. Emilie was keen to do some hand and foot painting. Niamh is usually reluctant to get her hands or feet dirty but she got convinced by Emilie it would be fun. And fun it was. Before I had time to think they both had their legs painted in pink. They were very proud of themselves.
The physio had recommended feet painting for Niamh as the paintbrushes stimulate her feet to move up which is good work for her leg muscles. I have tried many times, but she wouldn't let me. Emilie tries once and now Niamh can't get enough of it.
Niamh's blood counts today had not changed much compared to Tuesday's:
Hb: 10.4.
WCC: 2.1 (slightly better).
Plats: 42.
Neutr: 1.4.
We went to the Children's Hospital late this afternoon for a platelet transfusion which she had at 6pm.
Tomorrow we will go back to the Children's Hospital after radiotherapy for a blood transfusion. Her Haemoglobin is above 10, but the Consultant, we assume, is expecting it to drop further over the next few days.
So she should be nicely topped up for the weekend and for her last week of radiotherapy. This time next week it will be all OVER!
We still don't have a date for the next MRI scan but the Consultant has said he would like to wait at least 6 weeks. This takes us around Niamh's third birthday.
Tuesday, 21 June 2011
Radiotherapy Days 25 & 26 (7 left to go)
Niamh is still doing well. She is in fact getting a little more adventurous and more rebellious each day which is great but scary!
She continues to take a few steps unaided every day but lacks the confidence to keep going. There are still a few more things she needs to (re)master: sitting from standing position, coming off the sofa, standing up from sitting. She is practising them all but she is still not strong enough to do them on her own. At the moment when she wants to sit, she bends her knees and hope for a soft landing which is luckily usually the case (our knees).
Niamh has been sleeping better, despite waking up very early, usually around 5.30am, this morning it was 3.30am. Rude!
Her communication is gradually improving. Emilie is helping a lot with this. The speech and language therapist has also noticed how much more Niamh talks when Emilie is with her. She will now come and see Niamh once Emilie is home from school.
Niamh's skin is looking better this week. Her neck is still dry, but a lot less red. The rest of her head is a little dry but not red. Her face is normal, no more red eyes. She looks a lot better than she did a couple of weeks ago.
Niamh is weighed every Monday. When she started 6 weeks ago she was 15.6kg, yesterday she was 15.1kg.
Niamh's blood counts today were disappointing:
HB: 10.8 (ok).
WCC: 1.7 (down).
Platelets: 48 (very down).
Neutrophils: 1.1 (low immune system again).
They usually transfuse platelets when they are under 50. The Consultant prefers to do another test on Thursday and see how they are then. She may need platelets and possibly blood later in the week.
So, so far so good, another week and two days to go.....
She continues to take a few steps unaided every day but lacks the confidence to keep going. There are still a few more things she needs to (re)master: sitting from standing position, coming off the sofa, standing up from sitting. She is practising them all but she is still not strong enough to do them on her own. At the moment when she wants to sit, she bends her knees and hope for a soft landing which is luckily usually the case (our knees).
Niamh has been sleeping better, despite waking up very early, usually around 5.30am, this morning it was 3.30am. Rude!
Her communication is gradually improving. Emilie is helping a lot with this. The speech and language therapist has also noticed how much more Niamh talks when Emilie is with her. She will now come and see Niamh once Emilie is home from school.
Niamh's skin is looking better this week. Her neck is still dry, but a lot less red. The rest of her head is a little dry but not red. Her face is normal, no more red eyes. She looks a lot better than she did a couple of weeks ago.
Niamh is weighed every Monday. When she started 6 weeks ago she was 15.6kg, yesterday she was 15.1kg.
Niamh's blood counts today were disappointing:
HB: 10.8 (ok).
WCC: 1.7 (down).
Platelets: 48 (very down).
Neutrophils: 1.1 (low immune system again).
They usually transfuse platelets when they are under 50. The Consultant prefers to do another test on Thursday and see how they are then. She may need platelets and possibly blood later in the week.
So, so far so good, another week and two days to go.....
Saturday, 18 June 2011
Radiotherapy Days 22, 23 & 24 (9 days left to go)
Niamh has now had 3 out of the 12 days of boost radiation. The first day it took quite a while as they had to take images again to make sure it was all done as accurately as possible. Yesterday it went much quicker. They do three radiation beams each day, one at the back of her brain (comes out just above the eyes), one on the left side of her brain at the top of her ear, and the other one on the right side of her brain just above the ear and it goes at an angle to avoid the cochlea. [easier to demonstrate than to put into words].
Niamh is still doing well. She was very happy yesterday to go to Emilie's birthday party. She seemed a little shocked at first to see so many familiar faces in the one place but soon got into it. She was very keen to show off her standing and walking skills to friends.
This morning she went to a little friend's birthday party in a park with Emilie. She enjoyed taking part in the activities (see photos).
Emilie is very happy that her sister could come to her party and their friend's party this morning. I am sure it is difficult for her because children do ask questions about Niamh, but she is so proud of her little sister that she wants to show her off to everyone. Everyone is being very supportive.
Niamh is still doing well. She was very happy yesterday to go to Emilie's birthday party. She seemed a little shocked at first to see so many familiar faces in the one place but soon got into it. She was very keen to show off her standing and walking skills to friends.
This morning she went to a little friend's birthday party in a park with Emilie. She enjoyed taking part in the activities (see photos).
Emilie is very happy that her sister could come to her party and their friend's party this morning. I am sure it is difficult for her because children do ask questions about Niamh, but she is so proud of her little sister that she wants to show her off to everyone. Everyone is being very supportive.
Tuesday, 14 June 2011
Radiotherapy Days 20 & 21 (12 days left to go).
That's it, Niamh had her last radiation to the spine today, no more. Phew. Tomorrow will be day 1 of 12 days of boost radiation to the original site of her tumour.
Niamh has had a lovely couple of days despite a couple of visits to the Children's Hospital. Her blood results yesterday were:
Hb: 9.2 (transfusion needed).
WCC: 3.2 (much better).
Platelets: 44 (transfusion needed, but we were relieved that they hadn't dropped too much from Friday).
Neutrophils: 2.5 (much much better).
Niamh had a platelet transfusion yesterday and a blood transfusion this afternoon.
Yesterday the community Physio and the community Occupational Therapist came to assess Niamh's needs. We were referred to both last December but we had to cancel every appointment so far as we were always back in hospital. We were pleased to make it yesterday. Niamh was so happy to show off her standing and walking with one hand only. The Occupational Therapist played with Niamh to assess her development. She felt that Niamh was doing great and didn't really need their input at this stage. They will check on her again in 4 to 6 months time. It was reassuring to hear that her development hasn't been too affected so far. The physio said that Niamh will be on the waiting list and they will give her some weekly sessions as soon as a physio is available.
This morning after treatment we went to the Radiotherapist Consultant clinic (weekly clinic). Niamh is usually asleep when we go. Today she was in full form. She showed off her standing, walked to the Consultant and held his hands, gave him lots of smiles and even blew him kisses. He was impressed. As far as the Radiotherapist Consultant is concerned, Niamh is doing great so far.
I feel that Niamh has really changed over the last few days. She is gaining confidence every day not only in her physical abilities but also with her communication. She is acting more and more like a 2, almost 3 year old. She is being cheeky, she is trying to be more independent (getting dressed, putting shoes on, etc), she gets herself more involved.
We now hope that she will keep on doing well at least till the weekend. It is Emilie's birthday on Friday and Emilie really wants her sister to make it to her party.
Picture with Caitlin was taken a couple of weeks ago when the sun was shining. The other one was on Sunday in the rain.
Niamh has had a lovely couple of days despite a couple of visits to the Children's Hospital. Her blood results yesterday were:
Hb: 9.2 (transfusion needed).
WCC: 3.2 (much better).
Platelets: 44 (transfusion needed, but we were relieved that they hadn't dropped too much from Friday).
Neutrophils: 2.5 (much much better).
Niamh had a platelet transfusion yesterday and a blood transfusion this afternoon.
Yesterday the community Physio and the community Occupational Therapist came to assess Niamh's needs. We were referred to both last December but we had to cancel every appointment so far as we were always back in hospital. We were pleased to make it yesterday. Niamh was so happy to show off her standing and walking with one hand only. The Occupational Therapist played with Niamh to assess her development. She felt that Niamh was doing great and didn't really need their input at this stage. They will check on her again in 4 to 6 months time. It was reassuring to hear that her development hasn't been too affected so far. The physio said that Niamh will be on the waiting list and they will give her some weekly sessions as soon as a physio is available.
This morning after treatment we went to the Radiotherapist Consultant clinic (weekly clinic). Niamh is usually asleep when we go. Today she was in full form. She showed off her standing, walked to the Consultant and held his hands, gave him lots of smiles and even blew him kisses. He was impressed. As far as the Radiotherapist Consultant is concerned, Niamh is doing great so far.
I feel that Niamh has really changed over the last few days. She is gaining confidence every day not only in her physical abilities but also with her communication. She is acting more and more like a 2, almost 3 year old. She is being cheeky, she is trying to be more independent (getting dressed, putting shoes on, etc), she gets herself more involved.
We now hope that she will keep on doing well at least till the weekend. It is Emilie's birthday on Friday and Emilie really wants her sister to make it to her party.
Picture with Caitlin was taken a couple of weeks ago when the sun was shining. The other one was on Sunday in the rain.
Sunday, 12 June 2011
Second First Steps
We've had another lovely weekend. Niamh is looking a bit burnt from the radiotherapy but she is still in good spirits and trying to be as active and involved as she can. Today she took her second first steps, she has learnt to walk for the second time! Once when she was about 1 year old and again now at 2 3/4. She walked 7 or 8 steps between mum and dad without anyone holding her which was very impressive. Hopefully in the coming weeks she will continue to get stronger and gain some of her independence back. Radiotherapy symptoms permitting.
She only has two more days of radiation to the whole brain and spine which is a relief. After that she has 12 days of boost to the original site of her tumour.
Niamh has been sleeping a bit better but has been sick a couple of times this weekend. Tube passing went without a hitch which is fortunate as Niamh's platelets are probably very low. She'll have a blood test tomorrow and she may need a platelet transfusion. We'll wait and see.
Saturday, 11 June 2011
Radiotherapy Days 17,18 & 19 (14 left to go)
Only 2 weeks and four days left of treatment.
This week has actually gone a lot better than I had anticipated. She has been looking better, her eyes are possibly looking a little less red than last week. Her head and neck are however getting redder each day.
I thought we would be in hospital all day yesterday for transfusions but we ended up having a lovely day at home with Emilie. She enjoyed her many visitors, especially showing them her standing and dancing.
Her blood counts yesterday were:
HB: 10.2 (they transfuse below 10).
WCC: 2.8 (improvement).
Platelets: 54 (they transfuse under 50).
Neutrophils: 2.1 (improvement).
We were very pleased that she is not neutropenic and that her counts have plateaued a little. We were hoping that they would give her a platelet transfusion as her platelets are low but the Consultant prefers to wait till Monday.
So Niamh is doing well so far, she struggles a little with her concentration but I guess it can be expected with the treatment.
Niamh's sickness has been a little better this week compared to last weekend. She was sick once on Thursday afternoon and once last night at 3am. We are hoping she won't be too sick over the weekend as passing Ng tubes with low platelets is stressful.
This week has actually gone a lot better than I had anticipated. She has been looking better, her eyes are possibly looking a little less red than last week. Her head and neck are however getting redder each day.
I thought we would be in hospital all day yesterday for transfusions but we ended up having a lovely day at home with Emilie. She enjoyed her many visitors, especially showing them her standing and dancing.
Her blood counts yesterday were:
HB: 10.2 (they transfuse below 10).
WCC: 2.8 (improvement).
Platelets: 54 (they transfuse under 50).
Neutrophils: 2.1 (improvement).
We were very pleased that she is not neutropenic and that her counts have plateaued a little. We were hoping that they would give her a platelet transfusion as her platelets are low but the Consultant prefers to wait till Monday.
So Niamh is doing well so far, she struggles a little with her concentration but I guess it can be expected with the treatment.
Niamh's sickness has been a little better this week compared to last weekend. She was sick once on Thursday afternoon and once last night at 3am. We are hoping she won't be too sick over the weekend as passing Ng tubes with low platelets is stressful.
Wednesday, 8 June 2011
Niamh's standing
Quality of the video is not great, but you can see Niamh standing whilst playing skittles. She spent most of the afternoon standing on her own and showing off to our visitors. The physio was very pleased with her this morning. Oh and she slept all night till 6am!!
After her first surgery in October she couldn't clap anymore. She has come a long way.
After her first surgery in October she couldn't clap anymore. She has come a long way.
Tuesday, 7 June 2011
Radiotherapy Days 15 & 16 (17 to go)
Almost half way through!
Let's start with some good news. Niamh is now standing unaided. She is loving it. She still wants someone near her but she can actually hold on her two legs by herself. Stronger leg muscles combined with greater upper body balance have given her the confidence to let go. She has spent most of the afternoon standing, enjoying some new found half independence (only half as someone still needs to be next to her).
Niamh hasn't been able to stand or walk unaided since she fell in France on 28th August 2010 so it is a big day!! It would be amazing if she could walk soon too.
Niamh's treatments yesterday and today have been relatively smooth. There is now another little girl who needs general anaesthetic after her so the team have to wake Niamh up a little quicker. She is not too keen on waking up so she stays asleep all the way till we get home.
The team at the Cancer Centre all say she looks great (despite her red eyes). I had a long chat yesterday with Helen, the specialist nurse. She believes the treatment is also to blame for the red eyes as the radiation beams are going close to the back of her eyes. So it is not just the tape.
She was a little confused as to why Niamh was sick so many times over the weekend. She says children are usually sick during the week and not so much over the weekend. Niamh has actually not been sick since Sunday night. The radiotherapist has increased her dose of ondensantron, the anti-sickness medicine.
Niamh is touching her head more and more, especially when tired. She doesn't cry though. Helen thinks her scar may feel a bit tight and she may get shooting pains every now and then.
At this stage in Niamh's treatment, we can expect nausea, tiredness and headaches. The headaches are caused by swelling in the brain. As Niamh had an empty hole (tumour removed in April), they think that she shouldn't suffer from headaches too much as there is space for swelling to take place. Hmmmmm! Hopefully that is the case.
After a couple of weeks of sleeping kind of well, Niamh has started waking up in the middle of the night again and is unable to get herself back to sleep. We end up having to resort to 'Peppa Pig' dvd in an attempt to get her to fall asleep. Last night she was awake between 1am and 5am. I mentioned this to the radiotherapist but he is not concerned. We are concerned that she may be losing out on important and needed sleep.
Niamh's blood counts today were:
Hb: 10.4.
Wcc: 1.8.
Neut: 1.2.
Plats: 74.
Everything is a bit low but fine for now. Next test on Friday.
Let's start with some good news. Niamh is now standing unaided. She is loving it. She still wants someone near her but she can actually hold on her two legs by herself. Stronger leg muscles combined with greater upper body balance have given her the confidence to let go. She has spent most of the afternoon standing, enjoying some new found half independence (only half as someone still needs to be next to her).
Niamh hasn't been able to stand or walk unaided since she fell in France on 28th August 2010 so it is a big day!! It would be amazing if she could walk soon too.
Niamh's treatments yesterday and today have been relatively smooth. There is now another little girl who needs general anaesthetic after her so the team have to wake Niamh up a little quicker. She is not too keen on waking up so she stays asleep all the way till we get home.
The team at the Cancer Centre all say she looks great (despite her red eyes). I had a long chat yesterday with Helen, the specialist nurse. She believes the treatment is also to blame for the red eyes as the radiation beams are going close to the back of her eyes. So it is not just the tape.
She was a little confused as to why Niamh was sick so many times over the weekend. She says children are usually sick during the week and not so much over the weekend. Niamh has actually not been sick since Sunday night. The radiotherapist has increased her dose of ondensantron, the anti-sickness medicine.
Niamh is touching her head more and more, especially when tired. She doesn't cry though. Helen thinks her scar may feel a bit tight and she may get shooting pains every now and then.
At this stage in Niamh's treatment, we can expect nausea, tiredness and headaches. The headaches are caused by swelling in the brain. As Niamh had an empty hole (tumour removed in April), they think that she shouldn't suffer from headaches too much as there is space for swelling to take place. Hmmmmm! Hopefully that is the case.
After a couple of weeks of sleeping kind of well, Niamh has started waking up in the middle of the night again and is unable to get herself back to sleep. We end up having to resort to 'Peppa Pig' dvd in an attempt to get her to fall asleep. Last night she was awake between 1am and 5am. I mentioned this to the radiotherapist but he is not concerned. We are concerned that she may be losing out on important and needed sleep.
Niamh's blood counts today were:
Hb: 10.4.
Wcc: 1.8.
Neut: 1.2.
Plats: 74.
Everything is a bit low but fine for now. Next test on Friday.
Sunday, 5 June 2011
Tired but Tough
We've had a nice weekend again, friends on Saturday and grandparents on Sunday. Niamh has been holding in there but we can see that the radiation therapy is starting to slow her down. She is starting to get quite tired and has red marks under her eyes which make her look even more tired. She's been sick a few times and we've replaced her tube.
She really enjoyed seeing baby Isla and also playing with our friends and going to the playground. Walking is still going very well and she managed the walk across the whole climbing frame with a bit of help.
We're glad that she's well into her radiotherapy treatment now and approaching the half way mark this week. Back to school for Emilie this week, she was great company for Niamh last week and I think she'll be missed this week.
Friday, 3 June 2011
Radiotherapy Days 12,13 and 14 (19 left to go)
Three weeks in, four to go. Niamh is still coping very well with it all.
Treatments are still going smoothly. Emilie has helped a lot this week. Shame she has to go back to school next week. But as she says, she has to, she has some learning to do.
On Thursday morning Niamh had a very good physio session with Claire. I thought she would be too tired as we had only just arrived home from her treatment but she was fine, she got into it. Claire is very happy with her progress.
This morning she had a session with Jo and Kaye, speech and langage therapists. Emilie helped too. They had a great time, lots and lots of giggling and shouting. Jo hadn't seen Niamh for three weeks and couldn't believe how much she had progressed with her sounds.
Niamh's blood counts were a bit confusing today:
at the Cancer Centre they were:
Hb: 9.6.
White Cells: 2.2.
Platelets: 35 (very low... transfusion needed).
Neutrophils: 1.4.
So we had to go into the Children's hospital for midday for a blood transfusion and a platelet transfusion. Haemoglobin needs to be above 10 when having radiotherapy.
When we arrived at the Clinic at the Children's Hospital they did the cross match for the blood and did another full blood test for their own record.
By 3pm, I was given some new blood results:
HB: 10.8.
White Cells: 2.3.
Platelets: 33.
Neutrophils: 1.7.
Quite a big difference for the haemoglobin level. The consultant said she wouldn't need blood as it was above 10, just platelets. So we waited, and waited and waited some more and at 5pm she started the platelet transfusion which lasted 30 minutes. By then she was very tired, very bored of being in the Clinic and was sick (luckily tube stayed in). Such a waste of an afternoon. By the time we got in the car to go home, around 6.15pm she was not smiling. Luckily her smile came back when she got home and Emilie gave her a cuddle.
Niamh hasn' t been looking so well this week. The anaesthetists have to put tape on her eyes every morning so that her eyes remain close when they put her mask on. Niamh has very sensitive skin and it has made the skin under her eyes look very sore and red. It makes her look even more tired than she really is.
Apart from all this, the week has been nice. The girls have enjoyed a few trips to the playgroung, Emilie has had a couple of friends over to play which Niamh has also enjoyed. It has been a nice sunny week. Hopefully a nice sunny weekend ahead.
Treatments are still going smoothly. Emilie has helped a lot this week. Shame she has to go back to school next week. But as she says, she has to, she has some learning to do.
On Thursday morning Niamh had a very good physio session with Claire. I thought she would be too tired as we had only just arrived home from her treatment but she was fine, she got into it. Claire is very happy with her progress.
This morning she had a session with Jo and Kaye, speech and langage therapists. Emilie helped too. They had a great time, lots and lots of giggling and shouting. Jo hadn't seen Niamh for three weeks and couldn't believe how much she had progressed with her sounds.
Niamh's blood counts were a bit confusing today:
at the Cancer Centre they were:
Hb: 9.6.
White Cells: 2.2.
Platelets: 35 (very low... transfusion needed).
Neutrophils: 1.4.
So we had to go into the Children's hospital for midday for a blood transfusion and a platelet transfusion. Haemoglobin needs to be above 10 when having radiotherapy.
When we arrived at the Clinic at the Children's Hospital they did the cross match for the blood and did another full blood test for their own record.
By 3pm, I was given some new blood results:
HB: 10.8.
White Cells: 2.3.
Platelets: 33.
Neutrophils: 1.7.
Quite a big difference for the haemoglobin level. The consultant said she wouldn't need blood as it was above 10, just platelets. So we waited, and waited and waited some more and at 5pm she started the platelet transfusion which lasted 30 minutes. By then she was very tired, very bored of being in the Clinic and was sick (luckily tube stayed in). Such a waste of an afternoon. By the time we got in the car to go home, around 6.15pm she was not smiling. Luckily her smile came back when she got home and Emilie gave her a cuddle.
Niamh hasn' t been looking so well this week. The anaesthetists have to put tape on her eyes every morning so that her eyes remain close when they put her mask on. Niamh has very sensitive skin and it has made the skin under her eyes look very sore and red. It makes her look even more tired than she really is.
Apart from all this, the week has been nice. The girls have enjoyed a few trips to the playgroung, Emilie has had a couple of friends over to play which Niamh has also enjoyed. It has been a nice sunny week. Hopefully a nice sunny weekend ahead.
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