It has been a long time since my last post. Sorry everyone. I have been struggling. Madelyn is doing amazing. But I am struggling. Thanksgiving Day was the one year anniversary of Madelyn’s diagnosis. I have been very contemplative the last few weeks. I have wanted to bundle up my little family and run away to start something new, something fresh. Essentially I am distracted, tired and sad. The anniversary is just shaking around my insides a little.
Madelyn has 14 months of treatment left. I think I am more scared of treatment ending. Chemo keeps the demon at bay. We will only know for sure that she has beaten this monster after five years of no recurrence. Five years of waiting, watching and worrying.
So that is what is going on in my head... Madelyn, however, has had a fantastic couple of months. She is simply a 5 year old, being a 5 year old. She has been full of energy, spunk... and well, just growing up. I am amazed in her transformation in the last four months. She has had her first dance recital, her first skiing lesson (Peter is especially excited about this one), is starting to sound out words (beginnings of reading), she is swimming across the pool all by herself and continues to be the most extroverted, confident five year old I have ever met. November was her best post-infusion and steroid month yet. Insomnia and hunger, yes, always... but energy was still good and hardly any extreme emotions.
On December 5th she had her “big” day. Every three months she receives a spinal tap with chemotherapy placed in her central nervous system or “going to the sleepy room.” This always makes her nervous and anxious. She also can’t eat before the procedure.
We’ve tried hard to teach Madelyn and Sophia words for describing their feelings. These are big concepts to understand at 3 and 5. If they are able to describe their feelings it can help a lot in coping with that feeling - we adults have trouble with this too. When we walked into the sleepy room Madelyn said a couple of times “I feel very nervous.” The doctors and nurses immediately surrounded her and told her why she DIDN’T need to be scared. Which didn’t make sense to me. It’s a scary room for me! She was just describing her feeling and didn’t need anyone to fix it. She just needed us to know. Which I think is so brave and mature. Peter and I’s response to “I feel very nervous and I am a little scared” is this: “That’s ok. It’s ok to be nervous and scared. I understand why you are feeling that way. If you need Mommy or Daddy, the doctors or the nurses to do something for you - to make things easier - you let us know. I love you, Madelyn.”
Madelyn’s counts were good, but her ANC is still running a little high:
Hem 37.9 Plat 213 WBC 3.1 ANC 1916
The doctor decided to wait four weeks before increasing her chemo dosing again. (It is the “sick season.”) Looks like we’ll be heading towards another increase in chemo though. We went toIsland Hospital CBC and counts are still a little high:
Hem 36.0 Plat 321 WBC 3.2 ANC 1808
She is growing. A few weeks ago (again overnight I swear) she grew out of all her shoes. We bought her five new pairs of shoes in one store. Rain boots, snow boots, runners, “fashion” boots (as MJ likes to call them), croc’s and dress-ups. She is in the 75th percentile for weight and 50th percentile for height. I was glad to hear this news as chemotherapy often stunts the normal growth of kids.
All this growing, meant an increase in dosing of her drugs. We saw the effects of that increase. She was very emotional, tired, hungry, tummy pains and had insomnia worse than usual. We also had to give her more pain meds. She cried every morning, all morning, from Tuesday - Friday and most nights. Luckily, when she gets to school her teacher says she is well distracted and is doing well... just tired and hungry.
During Madelyn’s steroid week Peter is often sleeping in the girls room. Madelyn’s insomnia keeps her awake and her waves of emotions make her nervous and anxious. So she comes into our room most nights and sleeps with us. Peter eventually gets up and crashes in the girls room. I always laugh seeing Peter passed out amongst pink sheets, a white, billowing overhead tent and engulfed by princess pillows and pillow pets.
She is still bothered by her short hair, but it doesn’t get her down. She crawled into bed with us one morning this week and said “Mama, Sophia is awake. She said she loved me.” I responded “oh, that is so nice honey.” “Ya,” she said “even with my short hair!” Oh, my heart.
When we arrived at school on Tuesday morning during her steroid week, she said the bandage over the site on her back (from the spinal tap) was bothering her and she wanted to take it off. So I went into school with her and we headed for the bathroom. Usually she likes to take bandages off slowly by herself. But I could tell she was tired and worn out. I asked her if she would like me to count and then take it off very fast. We’ve never done this before. Her face was sad but resolute: “Yes, Mama, ok. Let’s do that.” So I lifted a little corner and counted. As soon as it was removed she started to cry. But not huge screams and tantrums... just a sad, solemn cry. She knew it was best solution, but was sad about it and the discomfort. So strong in these tiny little moments. It’s because she has to do be brave so frequently that my heart breaks.
The holidays are about being thankful and thoughtful for all the special people in your life. I have so many people in my life that I am extremely grateful for... Peter, my two fabulous, wonderous girls, my family and all our fantastic, supportive friends. I have felt the weight and warmth of this love this year. We could not have made it through without each other and all of you.
December 23rd Peter and I will be celebrating just the two of us. This is a date we will never forget. The day we were told “do you want the good news or just the really good news?” I burst into tears as we were told Madelyn was in remission! I am especially thankful that this strong, beautiful girl is still HERE with us. Sitting next to me, hugging me and saying “Mama, I love you” with her dancing eyes.
Madelyn has 14 months of treatment left. I think I am more scared of treatment ending. Chemo keeps the demon at bay. We will only know for sure that she has beaten this monster after five years of no recurrence. Five years of waiting, watching and worrying.
So that is what is going on in my head... Madelyn, however, has had a fantastic couple of months. She is simply a 5 year old, being a 5 year old. She has been full of energy, spunk... and well, just growing up. I am amazed in her transformation in the last four months. She has had her first dance recital, her first skiing lesson (Peter is especially excited about this one), is starting to sound out words (beginnings of reading), she is swimming across the pool all by herself and continues to be the most extroverted, confident five year old I have ever met. November was her best post-infusion and steroid month yet. Insomnia and hunger, yes, always... but energy was still good and hardly any extreme emotions.
On December 5th she had her “big” day. Every three months she receives a spinal tap with chemotherapy placed in her central nervous system or “going to the sleepy room.” This always makes her nervous and anxious. She also can’t eat before the procedure.
We’ve tried hard to teach Madelyn and Sophia words for describing their feelings. These are big concepts to understand at 3 and 5. If they are able to describe their feelings it can help a lot in coping with that feeling - we adults have trouble with this too. When we walked into the sleepy room Madelyn said a couple of times “I feel very nervous.” The doctors and nurses immediately surrounded her and told her why she DIDN’T need to be scared. Which didn’t make sense to me. It’s a scary room for me! She was just describing her feeling and didn’t need anyone to fix it. She just needed us to know. Which I think is so brave and mature. Peter and I’s response to “I feel very nervous and I am a little scared” is this: “That’s ok. It’s ok to be nervous and scared. I understand why you are feeling that way. If you need Mommy or Daddy, the doctors or the nurses to do something for you - to make things easier - you let us know. I love you, Madelyn.”
Madelyn’s counts were good, but her ANC is still running a little high:
Hem 37.9 Plat 213 WBC 3.1 ANC 1916
The doctor decided to wait four weeks before increasing her chemo dosing again. (It is the “sick season.”) Looks like we’ll be heading towards another increase in chemo though. We went to
Hem 36.0 Plat 321 WBC 3.2 ANC 1808
She is growing. A few weeks ago (again overnight I swear) she grew out of all her shoes. We bought her five new pairs of shoes in one store. Rain boots, snow boots, runners, “fashion” boots (as MJ likes to call them), croc’s and dress-ups. She is in the 75th percentile for weight and 50th percentile for height. I was glad to hear this news as chemotherapy often stunts the normal growth of kids.
All this growing, meant an increase in dosing of her drugs. We saw the effects of that increase. She was very emotional, tired, hungry, tummy pains and had insomnia worse than usual. We also had to give her more pain meds. She cried every morning, all morning, from Tuesday - Friday and most nights. Luckily, when she gets to school her teacher says she is well distracted and is doing well... just tired and hungry.
During Madelyn’s steroid week Peter is often sleeping in the girls room. Madelyn’s insomnia keeps her awake and her waves of emotions make her nervous and anxious. So she comes into our room most nights and sleeps with us. Peter eventually gets up and crashes in the girls room. I always laugh seeing Peter passed out amongst pink sheets, a white, billowing overhead tent and engulfed by princess pillows and pillow pets.
She is still bothered by her short hair, but it doesn’t get her down. She crawled into bed with us one morning this week and said “Mama, Sophia is awake. She said she loved me.” I responded “oh, that is so nice honey.” “Ya,” she said “even with my short hair!” Oh, my heart.
When we arrived at school on Tuesday morning during her steroid week, she said the bandage over the site on her back (from the spinal tap) was bothering her and she wanted to take it off. So I went into school with her and we headed for the bathroom. Usually she likes to take bandages off slowly by herself. But I could tell she was tired and worn out. I asked her if she would like me to count and then take it off very fast. We’ve never done this before. Her face was sad but resolute: “Yes, Mama, ok. Let’s do that.” So I lifted a little corner and counted. As soon as it was removed she started to cry. But not huge screams and tantrums... just a sad, solemn cry. She knew it was best solution, but was sad about it and the discomfort. So strong in these tiny little moments. It’s because she has to do be brave so frequently that my heart breaks.
The holidays are about being thankful and thoughtful for all the special people in your life. I have so many people in my life that I am extremely grateful for... Peter, my two fabulous, wonderous girls, my family and all our fantastic, supportive friends. I have felt the weight and warmth of this love this year. We could not have made it through without each other and all of you.
December 23rd Peter and I will be celebrating just the two of us. This is a date we will never forget. The day we were told “do you want the good news or just the really good news?” I burst into tears as we were told Madelyn was in remission! I am especially thankful that this strong, beautiful girl is still HERE with us. Sitting next to me, hugging me and saying “Mama, I love you” with her dancing eyes.
I'm so happy to hear MJ is feeling great! Saddened to hear you had a rough anniversary. Have a nice celebration tomorrow.
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