Little Feet - Long Walk

Hello and welcome to my blog. This blog is the journey of our family after Millie, our 2 year old daughter, was discovered to have a large brain tumour. The tumour was caused by an aggresive cancer named anaplastic ependymoma. Please feel free to read as much as you want and spread the word. If you want to know more details about the diagnosis then it is best to start at "The beginning ... " which was written in May 2011. But you are welcome to follow us from today. I have created pages that summarise the events leading up to the start of going to Florida for proton radiotherapy at the beginning of June 2011, about 8 weeks after diagnosis.

Sunday 11 September 2011

Is this our life now?

It has been a busy couple of weeks. We had a fantastic family holiday in South Wales with a few days in a caravan by the beach and then a few days seeing old friends in Swansea. Thank you to everyone for your hugs and support. It was wonderful to see you all again and just what we needed.

The girls loved being in a caravan. So much so that they were both in tears when we left. Millie even had a tantrum and went and lay down on her bed and refused to leave! It lasted about 20 minutes! We did have a good time and I was sad to leave as well. We needed a holiday, not just for the rest but for the opportunity to spend time together as a family without any interruptions. Time away from the pressures of life. Time to renew family bonds. Time to relax. Time to have fun and laugh. Time to love. No wonder the girls cried.

We got home on the Friday which gave us the weekend to get ready for Monday when we hit normality/reality with a bang. We didn't manage it, I have been so focused on Millie and her treatment that it has been really hard work to think about anything else. My husband went back to work. Our eldest went back to school, now in Year 1 and growing every day. Millie started settling back at her nursery. She had an hour long session and did pretty well. I stayed with her but let the staff work with her as much as possible. Millie kept wanting me to play with her or hug her, which is understandable after all we have been through. She and I have not been apart for about 6 months. No one else has cared for her for any real length of time - not even my husband. They will do an hour or so together but she always wants me eventually. I thought it was going to be hard work settling her back in but she seems to be more than ready for it.

We went in again on the Tuesday and Wednesday morning. On Tuesday she went off with her carer and left me standing talking to one of the other staff. As Millie didn't seem to be worried that I wasn't there I went and hid for an hour! She had a good time and when I asked if she wanted to come back tomorrow she said "Pleeease!!!". So we did and we stayed for almost 2 hours. I sat with her during the music session but then disappeared again and she was absolutely fine. I am not sure how she will react when she knows that I have left the premises but we shall tackle that one next week. In the meantime she has renewed some friendships and is really enjoying the choice and variety of activities. She really needs the stimulation. The nursery can provide so much more then I can. And they are SO supportive - thank you everyone.

As well as settling into nursery Millie had 4 appointments. Two of them were for physiotherapy. On Tuesday we went to the hospital for hydro therapy for the first time. Millie was quite keen to get in the water and was doing well, unfortunately she was splashed in the face which upset her and we spent most of the rest of the session sitting on the side. I did manage to get her pushing a ball in the water with me carrying her towards it but she got splashed a second time and that was it. When I asked her afterwards if she had enjoyed herself she said no because she had been splashed! Our second PT appointment was for an evaluation by her new physical therapist. Claire was very positive and has had a lot of experience with children with a similar condition, which is really nice to know. I think we will get on with Claire. We will be seeing her occasionally in the Child Development Centre. However, our main therapist will be Jenny. We haven't met her yet (next week) but she will be visiting us at home weekly and will be doing both the physical and occupational stuff. It all sounds quite positive. And they are talking about fitting in with my work hours (when I get back) which would be really good.

Our third appointment for the week was with our CLIC social worker, Kim, on Thursday morning. She came to visit and she asked me all sorts of questions so she could complete the forms for Disability Living Allowance. I am so grateful to her for doing this for us. She knows the ins and outs of the form and said she would get it in next week. She will spend 4-5 hours completing it which is just astounding. Something I would never have the time to do. And this is before the government makes it harder to apply!

Friday was our worst day. Millie needed to be in the hospital by half 8 so that she could have the first of many endocrine tests. We had to leave the house before 8am i.e. an hour before our eldest starts school. My husband felt he had to be in work so my parents stepped in and took her to school for us. My mother then came to the hospital to give me much needed support. The purpose of the test was to ensure that Millie's hypothalamus is functioning as it should be. The results will be used as a baseline to compare against future tests. Her hypothalamus was irradiated which means that the production of hormones could be a problem in the future. From what I understand (and I could be wrong - if I am I will post corrections when I find out) testing for changes in growth hormone is very difficult so a test for stress hormones was done instead. This involves taking a blood sample, injecting a drug that has some sort effect on the production of stress hormones and then taking 3 more blood samples at 30 minute intervals. To do this Millie needed a cannula in her hand and that is what turned a simple procedure into a nightmare.

I knew that Millie would need a cannula so I had started preparing her for it by using Duckie and talking about having a wiggly in her hand. I even modified Duckie and put some velcro on his hand so that his wiggly could be moved there. It all seemed to work well and Millie was very happy to put medicine into Duckie's hand wiggly. I also talked to her about having magic cream on her hand to help take the pain away (it is a local anaesthetic). I don't know what it is about the cream but she really did not like it. From the moment she saw the tubes she started screaming. It was a struggle just to get it on and cover it with bandages. They put cream on both hands. We then had to wait for half an hour before they could cannulate. We went to play in the waiting area and she alternated between happy and screaming "take it off". The nurse decided that a registrar was needed to do the cannulation as quickly and calmly as possible, instead of doing it themselves. Looking back I think they worked out that Millie would kick up such a fuss that they would need extra people to hold her still. I sat her on my lap facing me and held her tight, our nurse held her arm still, a play therapist tried to distract but also held a leg. The registrar did the cannulation whilst holding her hand and another nurse handed him everything. We must have been in that room for half an hour. The cream is good but one of its side effects is that the veins tend to disappear, which is what had happened. The registrar decided to use a vein in the underside of Millie's wrist but that had not been numbed so they had to use the numbing spray. Millie definately felt it go in, I was barely able to hold her still and the screams were heart wrenching. She struggled and screamed so much that she used up all her energy and literally fell asleep in my arms during the procedure. She was tired before we got there but it took about half an hour for the heavy breathing and sobs to stop. It isn't the first time she has fallen asleep during cannulation. It is very hard to see her so stressed but once asleep she is relaxed which makes it all a bit easier. We were given a room so that she wasn't disturbed and I cuddled her in my arms. She slept through the first blood sample but they had problems getting blood for the second sample and the process of whatever they do woke her up. Fortunately, they were able to finish quickly and the cannula was removed. I'm not sure she was aware that it had gone in which is a small blessing. She recovered fairly quickly - chocolate buttons and Nanny are a great distraction and reviver! We then went to get her a prawn sandwich and donut as a treat before heading home. Reminiscences of america!

We got through this one but she needs this test, or similar, every 6-12 months. And in 2 weeks she has her first MRI. She will need to be aneasthetised and will also need to be cannulated. Our nurse suggested that we request they use gas and then cannulate her when she is asleep. But we still have to go through the tests and I have absolutely no idea how we are going to manage. We need someone like Kim to help us out. There has to be a better way and I will not rest until we have found it.

The MRI is another cause for concern and not just because of the anxiety about the results. We have been given a time of half 2 in the afternoon and been told she can't have anything to eat after half 7 in the morning. This is 7 hours, the normal is 6 hours. The other day she missed her snack and by half 12 she was sat on the sofa crying at me because she was so hungry. I can't believe that they do not scan young children first thing in the morning so that the hours of starvation are during sleep. By the time she has been scanned and is awake she will not have eaten for over 8 hours - and that is assuming they are not running late. She is 2 and recovering from a serious illness she needs to eat regularly to keep her strength up. It is going to be so stressful for her and me. I have already queried why this is the case and have been told that it is to do with the availability of the anaesthetist and MRI machine. Our ward nurse is going to find out more and see what she can do but the time won't be changed. I have warned them that I will be fighting this 'policy'.

Come on NHS - I know you are strapped for cash and working with limited resources but you can and must do better than this for our children.

81 comments:

  1. My friend, The bad news is that it isn't over, but the good news is that she has already come so very far. Lilly asks about her little friend often, and I read her your updates. She was sad when I told her today that Millie is struggling with the "special medicine tubes". She got down on her knees and prayed for Millie, and that she be brave. Hoping for good results soon ...

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  2. I know it is not quite the same, but please have a virtual hug from me. *HUGGGGGGG* It is heart breaking enough to read this, it must be appalling for you at times. I have every faith in you and your little family tho. Stay strong, hun, and when you can't stay strong, find someone to lean on. God bless.

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  3. You and your family are beautiful and I hope everything is good with you all.

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  4. Just wanted to send love to Millie--it's possible she can beat this. My prayers are with you and your family.

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  5. Millie, Stay strong cutie! I can tell you parents love you very much and are fighting so hard to take care of you. Love, Emma

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  6. Love Love Love to you and yours!!! Hats off to your strength... Amazing fight in you all.... So much hope and light to you :)

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  7. You and your beautiful family are loved! You are so amazingly strong and Millie is blessed to have you <3

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  8. Thinking of you and love to Millie. Lots of *Hugs* :)

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  9. Love to you all. Millie is in our thoughts and prayers!

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  10. Wishing you and your family love and strength!

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  11. Stay strong Mommy and Millie! You are all incredibly brave fighters. Keep going! Be proud of getting through every step. Celebrate each day and all that was done, because your accomplishments are incredible, even if they seem small. Don't worry about what might be on the horizon, because you have so many people cheering you on everyday.
    Sending love and prayers from Indiana!
    xoxo,
    M

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  12. I don't know how things stand now, but however they are, much love and healing thoughts to all of you. *Huge hugs* xx

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  13. Wishing the best for your whole family, and especially Millie.

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  14. Praying that whatever has happened over the past few months, you and your family have peace and feel very loved.

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  15. So sorry to hear of all your troubles. I don't like needles either and at 24 years old still call my Dad to talk me through it when I need to get blood drawn. I hope things start looking up for your family, but especially for your daughter. I know God will hold your hand through every hardship. Love, prayers and support sent from Green Bay, WI

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  16. Millie seems like a brilliant soul, and I wish you, her, and your family the very best. Good luck with everything. I know you can all make it through, and I hope she will soon be happy and healthy.

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  17. Wishing your family, Millie, and all her doctors and carers all the best in the road head. Good on you for staying so strong for your family. God bless and may you have peace and comfort, and may Millie recover speedily. Sending much love and support.

    Love, Heidi in Australia

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  18. Much love to you and your sweet Millie. The trials of this life are never fun, and rarely are they easy. But, they are certainly present in our lives. Please know that even though I am a stranger to you, and will probably never meet you, that I love you and pray for the very best things for you and your sweet family. There is always hope to be found, strength to be gained and peace that will come. I hope that just knowing that you are being thought of will provide one of those things in some small way.

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  19. Sending lots of love and prayers your way.

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  20. Lots of love to you & your family x x

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  21. Sending Millie lots of Love and Light so she can cope with whatever comes her way. I will have you in my prayers!
    Hugs from Cova, Mexico

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  22. Sending lots of Love and Prays to all of your family. From
    Ottawa, Ontario, Canada

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  23. Sending all best wishes to you all. With love and prayers for strength and hope xx

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  24. Sending love and prayers your way!!

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  25. Sending love and best wishes to your family!

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  26. Thinking of you and sending lots of love and prayers to you and your family.
    Big Cheesy hugs from Wisconsin.

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  27. I hope that your family and husband continue to give you love and support when you need it most. The burden is falling on you and it must be exhausting to stay strong for your daughter all of the time. But it will be worth it when she gets better. Many thoughts coming your way.

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  28. It's been a while since you have posted, but I wanted to let you know that you are in my thoughts and prayers. :)

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  29. Prayers to Millie and your family. Continue to stay strong we are all behind you. Sending positive energy your way! Take Care.

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  30. Tonight, I will pray that little Millie gain strength and courage, to continue on her journey. May God be with you and all of your loved ones, especially Millie.

    <3

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  31. All the things that you, as a family, have had to endure. She (and all of you) are brave fighters! I will keep your whole family in my prayers. I sincerely hope they were able to reschedule that MRI to early morning. I hope you you get to spend quality family time together as much as possible. God Bless!
    Angie xxx

    ps. You can tell Millie that I'm a lot older than her but I still don't care to be splashed in the pool either :)

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  32. Thinking of you all and sending much love, from Celia in New Zealand

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  33. Sending prayers to Millie and the entire family...and duckie too.

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  34. Stay strong, all will go well.

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  35. I'm praying for you and your family. I'm hoping things are going better. Hang in there! Sending hugs your way.

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  36. I hope you and Millie and the rest of your family are doing well. Take care.

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  37. Best Wishes for your family and good vibes.

    Love Bomber from Mexico
    amber

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  38. You and your family are in my thoughts and prayers <3

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  39. Sending sweet thoughts to your family. Lots of love

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  40. I hope that all the love and prayers that are being sent your way bring you at least some sense of peace, comfort and hope. God bless you and your precious little girl.

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  41. Sending you loads of love; my thoughts and prayers are with you and your family. Best of wishes. ((HUG))

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  42. Hello!
    Hope you guys are staying strong and getting through this. You can do it!!
    Love from Baltimore

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  43. Sending you love and prayers! I hope everything is going well.

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  44. *HUGS* and wishing all my best for Millie and all of you.
    Love from Connecticut.

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  45. (((hugs))) of strength and comfort for you all...

    love surrounds you,
    Lori Luza

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  46. Sending many prayers your way.

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  47. Sending Millie and family lots of love and holding you all in our hearts.

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  48. Sending much love your way, you are an incredible family!

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  49. I hope you and your family have been doing well. I'm sorry that the process has been difficult, but I'm praying that you have found answers and peace during this time. Just know that so many people love you and care about you. Sending hugs and prayers from Texas.

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  50. Millie is such a brave little girl,and God loves her and you all SO much.He has a perfect plan for your lives..keep trusting him <3

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  51. You and your family are in my thoughts. Sending lots of love your way.x

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  52. Sending you vats of love as all of you continue your incredible and huge battle. I have no experience in either having children of my own or facing an illness as terrifying as this so all I can do send you love and light and tell you how many of us there are out here watching, waiting and hoping for you.
    Big warm smiles from a snowy London.
    :)
    Iona

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  53. sending so much light and hugs and a whole lotta strength to you all! love from borneo, gen

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  54. Hoping and praying for all of you that you are able to be held up by strength, encouragement, and love by God and by the people that surround you!

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  55. Keep strong, you're a very brave family, and Millie is a brave little girl. Sending good thoughts and love your way.

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  56. Stay strong mama, you're amazing! Praying for Millie, your other child and your marriage.

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  57. Praying for Millie and peace for all of you. You can do it!

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  58. Millie and your strength is amazing. Keep up this hard work and know there are many who support you. Love and healing sent top you and your family

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  59. Lots of love for you and Millie, stay strong!

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  60. Wow...what a story. Your strength as a mother unbelievably shines through in your post. Millie is fortunate to have you. My heart aches for her, and you and your family. What a courageous little girl. Thank you for sharing your story. I know there are lot of posts on here and I hope in some way you can feel the love and prayers and support and concern that are being sent "virtually" to you. May God give you and your family - especially Millie - strength for each day and blessings that give you hope.

    Blessings.
    - Jonathan

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  61. Sending oodles of love and light to Miss Millie & Co., to help Millie heal and give Mum and Dad strength and courage. Hang in there! xoxo, c

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  62. Sending so much love and lots of positive vibes to your family!

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  63. Hey Millie and family, I just wanted to send some love your way! :)

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  64. Can't imagine what you are going through. I'm thinking about your family and your sweet little girl. Sending positive healing thoughts to you!

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  65. *Big Hugs*. It'll get better. I can't say I know how, because I don't. But somehow, it will get better, and you and your strong little girl will be free from this illness. However long it takes. Stay strong. I'm praying for you.

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  66. Thinking of and praying for you. Stay strong.

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  67. Lots and lots of love your way :)
    Many blessings! x

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  68. I hope your little girl and the rest of your family are doing well. <3

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  69. Hi, I just wanted to say that I hope things get better for you all soon. Millie sounds like a lovely brave wee girl. My nephew who is 2 loves chocolate buttons too! Love and Best Wishes x

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  70. Stay strong Millie!! You can do anything:)

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  71. Remember everyday that the world loves you and we only wish the best outcome for everyone. Stay strong we are thinking about you all!

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  72. I'm so glad to know that there are people as brave as you and your little girl in the world. I'm so sorry for all that you have been through, but know that you are surrounded by love.

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  73. I'm so sorry that you, your daughter, and your family have to go through this. You're in my thoughts and prayers. I'm just one of so many people who cares about you.

    Sending lots of love and hugs from Colorado Springs, Colorado,
    Deb

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  74. Sending Millie (and you, her family) so much healing love and light through this difficult time.
    C.S.

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  75. Poor Millie!! I hope that there is a better way to do the cannulation; it must be so heartwrenching to hear your baby scream but realize that they have to go through it.

    Thinking of you! -S.

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  76. My thoughts and prayers go out to your family and Millie. As hard as it is to be positive through tough times, positivity is the only way to push through. We will be thinking of you all.

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  77. Sending love and prayers to you and your family XOXO

    Julie
    British Columbia, Canada

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  78. Your family is so brave and amazing. I don't know you personally but I want to send a message of love and support! Keep on shining (:

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