We waited with high hopes Friday morning for the results of Adam's blood tests to show that his neutrophils were on the rise and he could go home, only to find our hopes dashed: they were down again! On Wednesday they had gone up to 0.4, but Friday they were 0.2 and they are still at 0.2 this morning too so it looks like we will be spending the weekend in and out of hospital, waiting.
Adam in himself is doing really good. He looks good, he has energy again, and his mouth is beginning to heal from those awful ulcers that he had for the past two weeks. He's even sleeping well at night, which is a real relief and makes staying at the hospital a little easier to stomach. That is in part due to the portable blackout blinds which I finally brought from home to put up on the windows--it looks like we are living in a little cave now, but it helps with the light that keeps waking Adam up at night. I spent the night last night and he slept through and was not bothered about his infusion at 2am. It was the first night ever in hospital that I didn't have to give him melatonin to go back to sleep, and even had a relatively restful night myself. We both needed it after having Agnes with us the night before--she's got quite a reputation with the hospital staff now, and knows how to press the "code blue" button too!! (I can honestly say if we ever have an emergency on the medical ward, we'll get a very quick response!)
So, the question on everyone's mind now is, why would the neutrophils go down again? There doesn't seem to be an answer to that question, even for Adam's consultant, or at least not one that is obvious. The main reason to stay in and on IV antibiotics now is for safety, to hopefully prevent Adam getting something that his currently defenceless body could not fight, like a bacterial infection. This seems highly ironic given that every member of his family is fighting a virus right now, coughing and spluttering in the room alongside him. But giving us a bit of safety until his body picks up is comforting as much as it is tiresome to wait. In the meantime we can get out for little breaks between his day-time doses, though stepping out into the freezing Aberdeen wintry cold makes one just a little bit glad for the warmth of the hospital to return to!
Other positives this time include the four-times-a-day bath that Adam has been administering to himself--he is possibly the cleanest patient in the hospital! The other positive is figuring out I can watch movies on my computer next to him through the long evenings...oh boy am I grateful for lovefilm.com!!
Once again though, this time in hospital has given me the chance to reconnect with others that in the common parlance are "worse off" than we are. I consider nothing more worse off than spending days, weeks and months in the hospital living in the same limbo, the same artificial lighting and tiny box rooms and not really knowing if or when things will get better. We only get a taste of that at times, but a couple of my friends have been stuck in hospital with their children for months now and I continue to be amazed at their determination and the light they bring to other people. These mums have seen so many people come and go and yet they don't seem to get discouraged but instead make friends with everyone, taking time to talk to other worried mums, hold crying babies, laugh with staff and support the people around them. I know they must get discouraged and have down days, but instead of showing their despair they choose to care for other families and that is something truly inspiring. I am grateful for being able to laugh with them a bit, and honoured to know them.
And of course, I only know them because of Adam and his needs and experiences. So once again, the "cloud" of disability has the shining silver lining of the beautiful people you meet because of it.
Saturday, December 1, 2012
Tuesday, November 27, 2012
Of floods and fevers
Just as the flood waters in England and Wales seem to be rising with all the rain this week, so do Adam's fevers seem to be going up and up with no sign of abating. And in the case of both flood and fever, the only thing you can really do is wait. Maddeningly!!
I finally brought Adam in to hospital again today at noon, mainly because his temp was again over the threshold the hospital had given me (38.5) and he had started coughing. Not badly, but he also wouldn't eat his breakfast and was laying around looking pathetic. When I called the hospital though, they told me that his neutrophils (a component of white blood cells that respond to infection) were only 0.3. This is even lower than the other day and properly "neutropenic", i.e. Adam has no resistance to anything now and will need hospital support once again until his body gets stronger.
As anyone who has taken their child into hospital knows, though, Adam was absolutely perfect all afternoon. No temp, ate all his lunch. The consultant Dr King even gave me a ribbing about jumping the gun when he came in. Right before he told me we'd be in "for a whilie" which is Scottish for a while. Not, as he said, "a wee whilie", but "a whilie". So that means, well, nothing really except be patient and wait for test results to come back and blood counts to go up and temperatures to go down.
Wait. Just like those down south whose homes are flooded are having to do. Only this is really not a crisis like that, this is not our whole life going up in muddy water. This is just annoying. This is just inconvenient, logistically difficult for our family and hard to get things done. This makes us feel disconnected and puts the pressure up for Daddy who still has lots of obligations at work to complete. Including a trip down south to the flood-hit lands for a viva--for somebody else whose life hangs in the balance, or at least their professional life!
Sometimes I can't believe how interconnected we all are...racing around in our own rat races and having minor and major impacts on others by what happens in our own lives. Being impacted by others, by the weather or travel chaos. And here I am, with loads of time to do things for other people and no way to do it! Or so it seems...maybe I will just have to get creative....
Anyway, back to Adam. His temp this evening was 39.5, i.e. "way high". And he had trouble eating his dinner because his mouth is more sore, poor soul. What to do? Wait. Apparently. And go visit the lifts in the meantime of course. :)
I finally brought Adam in to hospital again today at noon, mainly because his temp was again over the threshold the hospital had given me (38.5) and he had started coughing. Not badly, but he also wouldn't eat his breakfast and was laying around looking pathetic. When I called the hospital though, they told me that his neutrophils (a component of white blood cells that respond to infection) were only 0.3. This is even lower than the other day and properly "neutropenic", i.e. Adam has no resistance to anything now and will need hospital support once again until his body gets stronger.
As anyone who has taken their child into hospital knows, though, Adam was absolutely perfect all afternoon. No temp, ate all his lunch. The consultant Dr King even gave me a ribbing about jumping the gun when he came in. Right before he told me we'd be in "for a whilie" which is Scottish for a while. Not, as he said, "a wee whilie", but "a whilie". So that means, well, nothing really except be patient and wait for test results to come back and blood counts to go up and temperatures to go down.
Wait. Just like those down south whose homes are flooded are having to do. Only this is really not a crisis like that, this is not our whole life going up in muddy water. This is just annoying. This is just inconvenient, logistically difficult for our family and hard to get things done. This makes us feel disconnected and puts the pressure up for Daddy who still has lots of obligations at work to complete. Including a trip down south to the flood-hit lands for a viva--for somebody else whose life hangs in the balance, or at least their professional life!
Sometimes I can't believe how interconnected we all are...racing around in our own rat races and having minor and major impacts on others by what happens in our own lives. Being impacted by others, by the weather or travel chaos. And here I am, with loads of time to do things for other people and no way to do it! Or so it seems...maybe I will just have to get creative....
Anyway, back to Adam. His temp this evening was 39.5, i.e. "way high". And he had trouble eating his dinner because his mouth is more sore, poor soul. What to do? Wait. Apparently. And go visit the lifts in the meantime of course. :)
Friday, November 23, 2012
Still standing
Well, after a long week we are home and, yes, still standing.
Adam had to go in to hospital after all on Wednesday evening, after the doctors cultured a staph (staphylococcus) bug in his blood. Normally staph grows on our skin, so for it to be in Adam's blood, and potentially in his port (bugs like that love plastic inside someone's body), could be bad and they wanted to treat it quickly and with strong IV antibiotics.
Adam and I went in about 6pm on Wed, and the nurse finally came to give his IV at 9:30. He was about to drop from tiredness poor boy, but unfortunately for Adam his gripper needle had come out of the port since the night before. So at 9:30 at night and without any cream or spray to numb the skin the nurse tried 2 more times to get the needle in before she got it. Then she gave the antibiotic, but while she was doing so Adam was sick everywhere!! Poor boy, it took me a while to get all cleaned up and the bed made, but in the end we crawled into bed and he was asleep very quickly. We think it was not a coincidence, and probably the bugs were in his port and got flushed through with the antibiotic. Hopefully they were also getting killed at the same time!
The night was by far our best one yet (at the hospital), and we were only awake from 2-2:30am while the next dose was being given. After that we slept until 8am. I think we actually did better than Daddy, who had to manage both Caleb and Agnes up during the night at home. And this after he had only flown in from Chicago at 1pm that day!!
Anyway, the next day (Thurs) we found out that it's the "less bad" type of staph bug so we were allowed to go home. The only catch is that Adam has to go back up to hospital every day at 4pm for his antibiotics until next Tuesday, provided that his cultures on Sunday are clear. This is indeed a small price to pay. And the doctor gave us two different medicines for both the thrush and virus in his mouth that are making it swollen and sore. He has a huge cold sore on his lip, and has been drooling like a madman all week! It's getting better already though, so hopefully he'll be much better by Monday and can go back to school. And eat again!
Because of all this, the doctors decided to postpone his scheduled lumbar puncture until next Thursday, so he will have a week to feel better and be all clear of bugs before his procedure. I am looking forward to that and a clear test so that I can lay my worries to rest, for another month at least. I really can't wait until this is all over and he has all his energy and strength back so that he IS well, rather than just looking well. I know several moms who feel the same, and it's a real encouragement to have their support and know I'm not alone in this waiting game (you know who you are!) :)
And now, despite another little fever tonight and a complete and utter meltdown about not getting to have a bath at the hospital, Adam, and his brother and sister, are sleeping in their beds and I'm about to join them. It's been a long, long week and even though I'm still standing, I'm going to lay down for a while.
Adam had to go in to hospital after all on Wednesday evening, after the doctors cultured a staph (staphylococcus) bug in his blood. Normally staph grows on our skin, so for it to be in Adam's blood, and potentially in his port (bugs like that love plastic inside someone's body), could be bad and they wanted to treat it quickly and with strong IV antibiotics.
Adam and I went in about 6pm on Wed, and the nurse finally came to give his IV at 9:30. He was about to drop from tiredness poor boy, but unfortunately for Adam his gripper needle had come out of the port since the night before. So at 9:30 at night and without any cream or spray to numb the skin the nurse tried 2 more times to get the needle in before she got it. Then she gave the antibiotic, but while she was doing so Adam was sick everywhere!! Poor boy, it took me a while to get all cleaned up and the bed made, but in the end we crawled into bed and he was asleep very quickly. We think it was not a coincidence, and probably the bugs were in his port and got flushed through with the antibiotic. Hopefully they were also getting killed at the same time!
The night was by far our best one yet (at the hospital), and we were only awake from 2-2:30am while the next dose was being given. After that we slept until 8am. I think we actually did better than Daddy, who had to manage both Caleb and Agnes up during the night at home. And this after he had only flown in from Chicago at 1pm that day!!
Anyway, the next day (Thurs) we found out that it's the "less bad" type of staph bug so we were allowed to go home. The only catch is that Adam has to go back up to hospital every day at 4pm for his antibiotics until next Tuesday, provided that his cultures on Sunday are clear. This is indeed a small price to pay. And the doctor gave us two different medicines for both the thrush and virus in his mouth that are making it swollen and sore. He has a huge cold sore on his lip, and has been drooling like a madman all week! It's getting better already though, so hopefully he'll be much better by Monday and can go back to school. And eat again!
Because of all this, the doctors decided to postpone his scheduled lumbar puncture until next Thursday, so he will have a week to feel better and be all clear of bugs before his procedure. I am looking forward to that and a clear test so that I can lay my worries to rest, for another month at least. I really can't wait until this is all over and he has all his energy and strength back so that he IS well, rather than just looking well. I know several moms who feel the same, and it's a real encouragement to have their support and know I'm not alone in this waiting game (you know who you are!) :)
Adam's face when he saw Daddy for the first time in 6 days...kind of melts your heart, doesn't it?
Tuesday, November 20, 2012
The Fear Factor
Little bit of pins and needles this week, though at the moment all seems to be well.
Daddy has been in New York, visiting Auntie Lou and family, and then on to his conference in Chicago. He left last Thursday morning and returns tomorrow, yay! Six days is a long time in the life of 9, 6, and 20 months!! Sounds like all has gone well though, minus a few hours of sleep that always get left out in these situations.
In the meantime, we've done well and are having a rather wet week in Aberdeen. The only slight concern is that Adam has been having low grade temperatures since the night before Brian left. It wouldn't be concerning except that it hasn't gone anywhere...nothing else seems out of the ordinary. He's been tired and grumpy, but you could say that for me most days of the year! However, the nurse who came today to take his bloods thought we should take him in for a full blood count, so we did. Caleb was at his friend Jacob's house, so Agnes, Adam and I went up about 4:30pm and were miraculously home by 6pm. We even had our tea and a Mr Tumble too!
I just called and the blood results were normal enough, though his neutrophils are close to the "too low" (neutropenic) level. He is due to have a lumbar puncture this Thursday, so as long as the docs are happy that will go ahead as planned. We'll see how he is tomorrow, and of course now that he has some oral antibiotics he should be fine.
My stress level has been noticeably higher the last few days, though I am reminded of the adage "You find what you are looking for." I don't want to look for Adam's leukaemia to be coming back, I don't want to even be thinking about that. I want to be so positive and strong that the option just isn't even on the table. But this isn't really about what I want.
This is about my boy, who has been a strong soldier through so much so far, and what God has for his life is unknown to me. I wish I could make everything right for him, but my prayer in this time of fear and uncertainty and doubt is that I can at least make everything safe and gentle for him, inasmuch as it's up to me.
I am probably not abnormal in saying that I am full of both fear and courage, weakness and strength, doubt and unwavering belief. I both know and don't know what I think will happen in the future, but again it doesn't matter--what happens is really immaterial, it's how you live now that matters. And Adam is a model of living wholly, every minute not as if it were his last, but as if each minute is worth his full attention. He is here now, sleeping peacefully in his bed. I am grateful for that, and for this moment as for many before to be part of his story, no matter how or when it ends or the many adventures that go along with it until that day.
Daddy has been in New York, visiting Auntie Lou and family, and then on to his conference in Chicago. He left last Thursday morning and returns tomorrow, yay! Six days is a long time in the life of 9, 6, and 20 months!! Sounds like all has gone well though, minus a few hours of sleep that always get left out in these situations.
In the meantime, we've done well and are having a rather wet week in Aberdeen. The only slight concern is that Adam has been having low grade temperatures since the night before Brian left. It wouldn't be concerning except that it hasn't gone anywhere...nothing else seems out of the ordinary. He's been tired and grumpy, but you could say that for me most days of the year! However, the nurse who came today to take his bloods thought we should take him in for a full blood count, so we did. Caleb was at his friend Jacob's house, so Agnes, Adam and I went up about 4:30pm and were miraculously home by 6pm. We even had our tea and a Mr Tumble too!
I just called and the blood results were normal enough, though his neutrophils are close to the "too low" (neutropenic) level. He is due to have a lumbar puncture this Thursday, so as long as the docs are happy that will go ahead as planned. We'll see how he is tomorrow, and of course now that he has some oral antibiotics he should be fine.
My stress level has been noticeably higher the last few days, though I am reminded of the adage "You find what you are looking for." I don't want to look for Adam's leukaemia to be coming back, I don't want to even be thinking about that. I want to be so positive and strong that the option just isn't even on the table. But this isn't really about what I want.
This is about my boy, who has been a strong soldier through so much so far, and what God has for his life is unknown to me. I wish I could make everything right for him, but my prayer in this time of fear and uncertainty and doubt is that I can at least make everything safe and gentle for him, inasmuch as it's up to me.
I am probably not abnormal in saying that I am full of both fear and courage, weakness and strength, doubt and unwavering belief. I both know and don't know what I think will happen in the future, but again it doesn't matter--what happens is really immaterial, it's how you live now that matters. And Adam is a model of living wholly, every minute not as if it were his last, but as if each minute is worth his full attention. He is here now, sleeping peacefully in his bed. I am grateful for that, and for this moment as for many before to be part of his story, no matter how or when it ends or the many adventures that go along with it until that day.
Sunday, October 28, 2012
I don't think you have to be near death to have your life flash before your eyes...it seems to be happening to me all the time now as normal!!
We are at the end of another October holidays, two weeks off school in the middle of October that I usually dread. This time, though, we had a blast and once again I'll be a little sad tomorrow when life goes back to normal and the boys go back to school.
The first week we went to Rachel House, a respite centre for families down in lovely Kinross. I took the kids myself so that Daddy could have some quiet time up here to concentrate on work. It was a lovely three days that we spent playing, eating, walking and meeting new friends. Here is one new friend that Caleb and Agnes met the first morning:
The second day the clown doctors came to visit, and spent about 20 minutes with each child singing to them and doing clown-y things. They were amazing, with red noses just like Mr Tumble as Caleb pointed out!
When we came back it was starting to get cold, so we pulled out the robes to try on. All three love their little warm robes, and they looked so cute too that I took this picture:
Then we introduced Agnes to lollipops, which she thoroughly appreciates, as you can tell!
This last week Adam spent two really good nights at Archway, a respite place here in Aberdeen. He enjoyed his time with his friends, and I took Caleb and Agnes to the cinema with some friends to see Madagascar 3. It was great, and so nice not to have to run out of the movie every 5 minutes chasing someone!!
When Adam came home we practiced for Halloween by trying on some old costumes. He liked this one best:
Then the last Friday of the holidays we actually had a little blizzard!! The snow fell all afternoon, and was just enough for a very dirty snowman that Caleb is making here:
It was also enough to freeze my clothes on the line! It had been blue sky and sunshine just an hour before, that's why I hung them out. Silly me!!
Well, that's a good two weeks. Now off to school, but more adventures await, of that I'm sure.
We are at the end of another October holidays, two weeks off school in the middle of October that I usually dread. This time, though, we had a blast and once again I'll be a little sad tomorrow when life goes back to normal and the boys go back to school.
The first week we went to Rachel House, a respite centre for families down in lovely Kinross. I took the kids myself so that Daddy could have some quiet time up here to concentrate on work. It was a lovely three days that we spent playing, eating, walking and meeting new friends. Here is one new friend that Caleb and Agnes met the first morning:
Yes, that IS a snake!!
The second day the clown doctors came to visit, and spent about 20 minutes with each child singing to them and doing clown-y things. They were amazing, with red noses just like Mr Tumble as Caleb pointed out!
The clown doctors singing for Adam
When we came back it was starting to get cold, so we pulled out the robes to try on. All three love their little warm robes, and they looked so cute too that I took this picture:
Then we introduced Agnes to lollipops, which she thoroughly appreciates, as you can tell!
This last week Adam spent two really good nights at Archway, a respite place here in Aberdeen. He enjoyed his time with his friends, and I took Caleb and Agnes to the cinema with some friends to see Madagascar 3. It was great, and so nice not to have to run out of the movie every 5 minutes chasing someone!!
When Adam came home we practiced for Halloween by trying on some old costumes. He liked this one best:
Then the last Friday of the holidays we actually had a little blizzard!! The snow fell all afternoon, and was just enough for a very dirty snowman that Caleb is making here:
It was also enough to freeze my clothes on the line! It had been blue sky and sunshine just an hour before, that's why I hung them out. Silly me!!
Well, that's a good two weeks. Now off to school, but more adventures await, of that I'm sure.
Wednesday, October 10, 2012
Kings and Queens for two days
Well, we officially had the whirlwind weekend of a lifetime!!
On Saturday the community centre behind our old flat where I worked for a few years had its 70th anniversary celebration, which included a visit from HRH the Earl of Wessex, otherwise known as Prince Edward (Prince Charles' little brother!) It was a rare treat to meet a member of the royal family and see the community where we spent so many good years brought together in celebration and joy.
Prince Edward, second from the right
But the real treat of the weekend was our trip to London to meet Mr Tumble! The Make-A-Wish foundation organised the whole thing for Adam, and it was as magical as they had promised it would be.
It started Sunday morning at 07:30 when we got into the taxi to go to the airport. The flight went really well, and the crew even gave Adam a little bear toy and a bag of sweets to share with his brother and sister. The sweets came in handy getting Agnes to sit still for a minute at a time! We landed in London and got into a car that took us to our hotel--the DoubleTree Hilton Hotel! It was amazing, beautiful and so posh--and what's more, they mixed up the rooms and gave our room to someone else, so then they put us in the Westminster Suite on the top floor!! We had so much space to spread out and so many TV's to enjoy watching! :)
Our free time was spent searching for food, wandering along the Thames, playing on playgrounds, riding in the London Eye, and taking pictures. Here are a couple from the first day:
Adam on the "Big Wheel", aka the London Eye
Adam and Agnes enjoying "Statue Man"
The family in front of the Houses of Parliament
Monday morning was an excited blur, eating a quick breakfast and then waiting for Adam's "special car" to arrive. When it did, it was the longest, most beautiful Chrysler stretch limousine I had ever seen (and the only one too)!!
Caleb was super excited too!!
So off we went in the limo, first through London and then out to Surrey, where we met up with some other families and finally, after more than a year of anticipation...Mr Tumble himself!!! The real Mr Tumble, who spent an hour with everyone singing songs, talking to everyone, doing some of the characters and then giving autographs and taking pictures. He was so sweet and personable, just like I imagined him to be. And the volunteers with Make-A-Wish were so wonderful, they really looked after everyone and made sure we were having a great time. I can't say enough good about the whole thing.
"Hello, hello, how are you?"
You can see from Adam's "wings" that he's transfixed, as is Agnes in front of him!
A short video of Mr Tumble doing his thing, and Caleb getting into the act too!!
Sadly our time with Mr Tumble ended all too quickly. We left and got back into our special car (which we casually referred to as "the Limo" all day as if that were our normal ride!!) and headed back into London. Our driver, Gideon, dropped us off at the Rainforest Cafe, where we had a fabulous lunch and watched all the exciting life-size animals move and roar. After the boys ate their weight in ice cream, we got back into "the Limo" and headed to the London Aquarium for our afternoon treat--seeing all the fish, sharks, eels, rays and penguins we could manage before our feet gave out!
Caleb got up close and personal with a crocodile!
After the usual dinner, bath and bed routine, we all slept like logs--worn out by the excitement of being VIP's for a day and meeting our very favourite Mr Tumble. Ah, sweet dreams for all!!
So that pretty much ended it...we had another stellar breakfast Tuesday morning, took a short walk, some photos and had another play on the playground before hopping into a car and heading back to the airport. And real life. It was all so wonderful to have that experience, all of which Adam thoroughly enjoyed. He loved the taxis, the food, the walking, the fish, the Eye, and most of all Mr Tumble. After all he's been through this last 18 months, to "give" him that trip was amazing, and to be given the ability to enjoy it with him without worrying about anything...well, that really was priceless.
Thanks again to the Make-A-Wish foundation, for helping us to forget for two days and feel like kings and queens. And for giving us one very happy boy.
Saturday, October 6, 2012
P.S. Happy Birthday Adam!
You may remember that Adam's birthday was at the end of August, on the same day as his most recent lumbar puncture. Here are a couple more photos from that day, just for fun:
Oh mom, do you have to sit so close?!
Sister and Auntie Meg know how to party!
Following Adam's grand old afternoon Oma from California arrived to help out and soon Opa followed. The reason? Mom and Dad's 15th Anniversary Grand Getaway to Greece!! Yes, we left it all behind for nearly a week to see the sun and ancient sights in Athens. We took too many pictures to post here, but I'll try to make an album and upload that soon.
Now, tomorrow we are off to LONDON to MEET MR TUMBLE!! This is it, the big day--the wish that Adam made to meet Mr Tumble, his favourite TV character! We meet him on Monday morning, so be thinking of us when you are off to work! I'll post pics straight away when I get back, I promise!!
I know that 7:30am will come early, so I'll sign off now. Sweet dreams (if I can get to sleep!!)
Wednesday, September 19, 2012
The Birthday Bash
I have been doing some housekeeping these past few nights, owing to the fact that I will join Brian for our long-awaited 15th anniversary trip to Greece tomorrow...finally!! I am grateful to have this opportunity, not only to the International Federation of Evangelical Churches for inviting Brian to their conference (and paying his way!) but also to my parents for taking charge of our three little whirlwinds for a week so we could do it!!
Also long-awaited are the pics from Adam's birthday party, held earlier this month. We invited his class, and though only three of the boys could make it we had a great group assembled. A few extra people and some friends of both the boys came along to help us celebrate. I know Adam knew he had friends around him--he was a happy boy.
Also long-awaited are the pics from Adam's birthday party, held earlier this month. We invited his class, and though only three of the boys could make it we had a great group assembled. A few extra people and some friends of both the boys came along to help us celebrate. I know Adam knew he had friends around him--he was a happy boy.
The birthday boy giving a big wave
Hungry chops, and the quietest group they had ever seen!
Tired from all the activity--bless!
It was a great afternoon...still can't believe it's been nine years, but we are blessed.
Wednesday, August 29, 2012
Birthday Wishes for Adam
Dear Adam,
Today you turned 9 years old.
I was amazed to see it written--it looks such an old number, if you know what I mean! I was sorry to see it written on your hospital chart, though, as once again the logistics of life meant that you had your routine 3-monthly lumbar puncture today. Happy Birthday Adam, have an anaesthetic!! Just kidding...I knew you wouldn't mind, especially since your party is not until Sunday. And with your usual grace and humour you sailed through it all yet again.
They complicated it this time by working on your ears too, which still defy all logic. The doctor said your left ear is infected so he prescribed some drops (you've already had your first dose without any trouble). The right ear, though, will continue to be a problem for some time. It's infected and scarred in the middle ear, so they had to cauterise it with silver nitrate and pack it with antibiotic ointment. The doctor does not know how much your hearing has been affected, or if it will be permanent damage or not. We'll know that in a few weeks, I guess. You also have a big hole in your eardrum, which is why you've had all that drainage over the past few months.
I'm sorry it's taken so long to get all this sorted, and that it had to be sorted on your birthday. You are most gracious. And after all that, you have also been walking funny tonight, hunched over and stiff. I wonder if they grazed a nerve with their needle? Are you sore? Is this something more sinister that I don't even want to name yet? I wish you could tell me how you feel!! Oh, how that has been the refrain of my heart for the last 9 years...Adam, we do need to work on your words :)
Well, you are happy just now and have enjoyed a bucket (literally) of ice cream tonight. And a special trip with Daddy. And a little party with your classmates, ahead of the one on Sunday. I have been grateful for your smile and cheeky mood since you woke up this afternoon from your nap. I am glad to have had nine years to begin to learn and love, and hope for many, many more to continue that journey.
Your faithful, if clumsy, Mother...
I love you.
Today you turned 9 years old.
I was amazed to see it written--it looks such an old number, if you know what I mean! I was sorry to see it written on your hospital chart, though, as once again the logistics of life meant that you had your routine 3-monthly lumbar puncture today. Happy Birthday Adam, have an anaesthetic!! Just kidding...I knew you wouldn't mind, especially since your party is not until Sunday. And with your usual grace and humour you sailed through it all yet again.
They complicated it this time by working on your ears too, which still defy all logic. The doctor said your left ear is infected so he prescribed some drops (you've already had your first dose without any trouble). The right ear, though, will continue to be a problem for some time. It's infected and scarred in the middle ear, so they had to cauterise it with silver nitrate and pack it with antibiotic ointment. The doctor does not know how much your hearing has been affected, or if it will be permanent damage or not. We'll know that in a few weeks, I guess. You also have a big hole in your eardrum, which is why you've had all that drainage over the past few months.
I'm sorry it's taken so long to get all this sorted, and that it had to be sorted on your birthday. You are most gracious. And after all that, you have also been walking funny tonight, hunched over and stiff. I wonder if they grazed a nerve with their needle? Are you sore? Is this something more sinister that I don't even want to name yet? I wish you could tell me how you feel!! Oh, how that has been the refrain of my heart for the last 9 years...Adam, we do need to work on your words :)
Well, you are happy just now and have enjoyed a bucket (literally) of ice cream tonight. And a special trip with Daddy. And a little party with your classmates, ahead of the one on Sunday. I have been grateful for your smile and cheeky mood since you woke up this afternoon from your nap. I am glad to have had nine years to begin to learn and love, and hope for many, many more to continue that journey.
Your faithful, if clumsy, Mother...
I love you.
Mum practicing with her new camera...caught me playing ball!
My handsome shot...playing drums at the recent day out in Ellon
Thursday, August 16, 2012
I am not very good at blogging. Have I said this before?
However...the summer is going by in a blur, school restarts in 5 days, and it's about time for an update.
This summer could not have been any more different from last summer, that's point one. For a start, Adam is doing well on his very predictable and manageable chemo maintenance programme (more about that later), and we have learned how to deal with the fluctuations in his mood and appetite so that life does indeed feel normal. He looks and acts so healthy, you would never know the trauma of last summer, which is a good thing--it is fading even from our memories.
Caleb has been impressing me lately with his very rational thought, so calm and like his Dad. The other day Adam had his first sleepover with his new respite place and as we left I was fretting..."I hope he's ok, I hope they know what to do for him," etc. Caleb looked at me and calmly said, without reproach but with firm intent: "Mom, just leave it. He'll be fine, stop thinking about it." So right, and so young to know when to care and when to let go. I do appreciate his support...even while I'm also chiding him about not winding his sister up so much!
Agnes, well she's 17 months now and learning fast, growing faster. She is the epitome of stubborn!! She is learning new words every day and keeps up with her brothers more than ever. I laugh constantly at her funny faces, her enjoyment of everything ("WOW, wat is dat??!!!") and her snuggles just when I want to throw a plate at the wall. She is a light, and complements the other lights around here well.
This summer we have been given a place for Adam at a respite centre close to our house. He had his first overnight last night and did brilliantly. He slept all the way through without a peep--something he would do only if he felt comfortable and safe. We are grateful for the time he can now have with "his friends", and for time that we four can do things Adam doesn't like doing without guilt. Last night we got a Chinese takeaway and watched "Despicable Me", all in one go, all sitting quietly on the couch...bless Adam, the sitting still and not worrying are the blessings of his absence. On the flip side, though, it was TOO quiet and I missed the hum of his noises in the background that I didn't realise until last night tell me subconsciously that all is well. Without his noises I have to think a bit more in a way that is maybe more like fretting, so Adam has become for me a comfort and constant humming presence that I appreciate. That is a good thing and I'm glad for a chance to be grateful for it.
What else...we have enjoyed time with lots of cousins, grandparents, aunts and uncles and even second cousins twice removed and a half twist or something like that! It's been wonderful to have people come all this way to US, since we can't go anywhere yet ourselves. What could have been a dull summer (and year) of drudging through chemo and feeling isolated has instead been a gift of a summer with lots of people and noise to enjoy surrounding us. We have seen some new things and been blessed by sharing our lives in big and small ways. The occasional craziness is always worth it, though I'm not saying it's a bad thing to have a quiet night to blog a bit now and again... :)
Oh, and finally: We now have our date to meet "Mr Tumble"--October 8, 2012!!! That's coming up quick, so mom will have to try to keep her lid on and do normal life for the next 8 weeks or so! Another visit with Oma and Opa from California should help, as will returning to work and school routine. But I'll be sure to keep you posted as we have more details...London and Mr Tumble, here we come!!
Now, since I know everyone just wants to see some photos...here is a brief selection from the summer:
However...the summer is going by in a blur, school restarts in 5 days, and it's about time for an update.
This summer could not have been any more different from last summer, that's point one. For a start, Adam is doing well on his very predictable and manageable chemo maintenance programme (more about that later), and we have learned how to deal with the fluctuations in his mood and appetite so that life does indeed feel normal. He looks and acts so healthy, you would never know the trauma of last summer, which is a good thing--it is fading even from our memories.
Caleb has been impressing me lately with his very rational thought, so calm and like his Dad. The other day Adam had his first sleepover with his new respite place and as we left I was fretting..."I hope he's ok, I hope they know what to do for him," etc. Caleb looked at me and calmly said, without reproach but with firm intent: "Mom, just leave it. He'll be fine, stop thinking about it." So right, and so young to know when to care and when to let go. I do appreciate his support...even while I'm also chiding him about not winding his sister up so much!
Agnes, well she's 17 months now and learning fast, growing faster. She is the epitome of stubborn!! She is learning new words every day and keeps up with her brothers more than ever. I laugh constantly at her funny faces, her enjoyment of everything ("WOW, wat is dat??!!!") and her snuggles just when I want to throw a plate at the wall. She is a light, and complements the other lights around here well.
This summer we have been given a place for Adam at a respite centre close to our house. He had his first overnight last night and did brilliantly. He slept all the way through without a peep--something he would do only if he felt comfortable and safe. We are grateful for the time he can now have with "his friends", and for time that we four can do things Adam doesn't like doing without guilt. Last night we got a Chinese takeaway and watched "Despicable Me", all in one go, all sitting quietly on the couch...bless Adam, the sitting still and not worrying are the blessings of his absence. On the flip side, though, it was TOO quiet and I missed the hum of his noises in the background that I didn't realise until last night tell me subconsciously that all is well. Without his noises I have to think a bit more in a way that is maybe more like fretting, so Adam has become for me a comfort and constant humming presence that I appreciate. That is a good thing and I'm glad for a chance to be grateful for it.
What else...we have enjoyed time with lots of cousins, grandparents, aunts and uncles and even second cousins twice removed and a half twist or something like that! It's been wonderful to have people come all this way to US, since we can't go anywhere yet ourselves. What could have been a dull summer (and year) of drudging through chemo and feeling isolated has instead been a gift of a summer with lots of people and noise to enjoy surrounding us. We have seen some new things and been blessed by sharing our lives in big and small ways. The occasional craziness is always worth it, though I'm not saying it's a bad thing to have a quiet night to blog a bit now and again... :)
Oh, and finally: We now have our date to meet "Mr Tumble"--October 8, 2012!!! That's coming up quick, so mom will have to try to keep her lid on and do normal life for the next 8 weeks or so! Another visit with Oma and Opa from California should help, as will returning to work and school routine. But I'll be sure to keep you posted as we have more details...London and Mr Tumble, here we come!!
Now, since I know everyone just wants to see some photos...here is a brief selection from the summer:
boys enjoying a moment together in the Botanical Gardens
With cousin Nathan at Fyvie castle
Sometimes you just want a naked swing, ok?
Looking cute before she launches herself off the train, at Seaton Park
Sunday, July 8, 2012
Apologies for the long absence...all is well in the Brock household.
We passed June in a bit of a blur, enjoying a visit from cousins, aunts, uncles and Oma and Papa from Texas. It was nice getting to show them all around our home city and introduce them to our favourite coffee shop, our church, our routines and of course: to Agnes! She fit right in with the crew and loved all the attention from her female cousins. She is 16 months going on 16 to be sure!
It was nice to be so pleasantly distracted in what is usually a very busy time of year for Brian and I. However, we did not overlook the one year anniversary of Adam's diagnosis on June 16. It was pouring with rain, as was "that day" one year ago, but the similarities stopped there. Adam had a great day and we spent it all together, which was what we were robbed of last year. In actual fact, I found his Leukaemia diagnosis much harder to deal with than his other diagnoses, mainly because it was, and still is, more life-threatening than his Down Syndrome or his Autism. It also changed life from what was normal, albeit different and difficult at times, to something abnormal, something frightening.
We are now one year on, and life is normal again, not that it hasn't changed significantly. We still give medicines every morning and evening, including chemotherapy. Once a month he goes in for an infusion and then has five days of steroids that throw our routine off a bit. But overall Adam is back, he is happy and energetic and full of life. He has weathered the storm and continues to grow, learn, communicate, be mischievous, and thrive.
Here he is watching the "Race for Life" in Aberdeen on July 1. This year, as with last year, our friend Chioma ran with Adam's picture glued to her back, in honour of him and his fight against cancer--along with SO MANY other friends, family, and friends of friends who have and are fighting against it too. It was a pleasure to walk with him to and from the race this year, as last year he couldn't walk and had to ride in the buggy the whole time. Even the rain couldn't dampen our enthusiasm!!
The whole gang watching the runners--funny that the only one in short sleeves is the Texan! :)
Lovely Oma and her Scotland grandkids on the way home...surprised to have caught everyone looking at the camera for once!
Adam and sister swinging at the park--the love and care he shows for her is amazing. All the kids interact really well, but Agnes has brought out a nice, sweet side of Adam for sure.
We spent this weekend doing lots of walking in the forest--yesterday in the rain, today in the warm cloudy weather. It is good therapy for a mostly city-bound mum and dad. Adam walked really well which made me think again of how far we've come from the chemo-riddled boy of last year. Agnes found and played with a spider for a LONG time today (yuk!) which kept her entertained while the boys and I took an extra loop over the hill together to meet her and Daddy. I am grateful for this time, for this summer that holds the promise of long days to walk and play and be out--not cooped up in the hospital like last summer. It makes me want to celebrate every day, both how much the kids put up with last year and how much freedom we have this year by comparison. And we will--another pleasure of this year is having residency and the financial boost of receiving benefits from the state for the first time ever. If we spend every last pence on ice cream and coffee, so be it! ;)
Saturday, June 16, 2012
One year on...
This picture says it all...one year ago Adam was being diagnosed with Leukaemia, sick and tired and in pain all around. THIS year, he was playing with his cousins, hugging and loving and healthy and full of life. It's been a hard year, but one in which we've all learned a lot. And who can argue with the joy that smile conveys?!
Happy Anniversary Adam...one year down, two to go. Here's to more smiles and many more years.
Happy Anniversary Adam...one year down, two to go. Here's to more smiles and many more years.
Friday, June 1, 2012
Summertime!
Yes, you read that right--even Aberdeen has its summer! I wanted to post some pictures from our recent "heat wave"to show that it doesn't take much to get out and about, only about 72 degrees!! It is over, of course, the summer heat that is, but that doesn't mean we can't remember it fondly...
This was the Aberdeen 10K, down at the beach that I ran for Children's Hospice Association of Scotland--46:01, not bad for a "veteran"! As you can see that was the start of the sunny days, though not too hot yet.
Here we are in the back garden with our friends the Drapers, enjoying the sun and watching the boys have a good time.
Now, Agnes is only 14 months, but already she knows how to handle the heat! And she loves the beach...that's my girl!!
Daddy and brother wrestling in the sand...one of them is soon going to be a "jelly donut", and I'll bet you can guess who!
Adam made sure nobody took our blanket, and enjoyed rocking and singing in the sun.
That's all for now...it's a terrible catch up, but I'll be back soon for the real details.
This was the Aberdeen 10K, down at the beach that I ran for Children's Hospice Association of Scotland--46:01, not bad for a "veteran"! As you can see that was the start of the sunny days, though not too hot yet.
Here we are in the back garden with our friends the Drapers, enjoying the sun and watching the boys have a good time.
Now, Agnes is only 14 months, but already she knows how to handle the heat! And she loves the beach...that's my girl!!
Daddy and brother wrestling in the sand...one of them is soon going to be a "jelly donut", and I'll bet you can guess who!
Adam made sure nobody took our blanket, and enjoyed rocking and singing in the sun.
That's all for now...it's a terrible catch up, but I'll be back soon for the real details.
Tuesday, March 27, 2012
My Agnes
Birthday reflections
This last weekend we decided to treat Uncle David to some touristing, and chose two sites that we are particularly fond of to go and see together. On Saturday we decided to visit Dunnottar castle, which is located just outside of Stonehaven about 13 miles south of Aberdeen. Unfortunately for our view we had the worst "haar" (or fog) in Aberdeen that I have seen in a long time that whole day, so much so that you couldn't even see the castle at all! The walk we did to it was cold and damp and everybody was a little weary by the end of the tour, including and especially Dad who pushed a crying baby in the buggy all the way back to the car so that he could pick us up (and not have to bump the buggy and baby down and up all the steps to the castle. It was built, after all, before disability regulations had come into effect. As in the 1300's!)
here is a pic of the "to" part of the journey--brrr!
Luckily Saturday night provided warm and welcome relief in the form of music at a local pub called the Blue Lamp, played by one of Brian's colleagues, one of his students, and two other divinity students. The group is called "Trimmed and Burning" and they are, to put it mildly, fantastic. We took Uncle David with us and he really enjoyed the night.
Sunday dawned clear and bright and proved to be the best of the weekend by far. We headed inland to Huntly to see the castle and play on the playground, followed by a picnic lunch in a town called Dufftown at another playground. Then a walk to the Glenfiddich Distillery for a tour of the warehouse and whiskey tasting. Then a pub dinner and back home in the gathering twilight to put the kids down and play another game of "Shoot the Moon". The day stayed warm and sunny all day--here are a couple of pics to show the fun times in action:
Mom and kids in full swing
Adam doing some climbing on the way to the Distillery
The evidence in plain view!
All this was a great preamble to turning 38 on Monday. I showered myself with sunshine and a cupcake for lunch, Caleb showered me with "presents" he made, Brian showered me with music and the Lord showered me with several days of sun and warmth (including the one day of haar to keep my expectations real!)
Overall I can say that it feels good to have another year under my belt. And a year in which I welcomed our daughter from my belly into my arms--wooed by her sweet smile and gorgeous personality every day, she has added light to my heart. I was also introduced to cancer in our family through dear sweet Adam, who has taught me anew what it means to soldier on and smile with your hands and soul even when your very marrow is rebelling. Brian and I have acknowledged both trials and the consolation of dear friends that keeps us going...Caleb has embraced both the loss of teeth and a place on the school council! I am running again and looking forward to doing my first race in three years on the 28th of April. If I may say so, I am faster than when I was only 37, and that right there is worth adding another year on!
Monday, March 12, 2012
Helping hands
We have had Uncle David here for a week now and have thoroughly enjoyed the change in dynamics that his presence brings, along with the gifts he has shared with us. So far he has been Chief Dishwasher, has developed skills in bottle-making and baby-feeding, has filled our front room with the sound of the mandolin and is at this very moment involved in putting together a sideboard that I ordered for the kitchen. That, and enjoying what Aberdeen has to offer, both weird and wonderful, and much more.
Here is a picture of some little hands helping Uncle David to do his work...
Apparently, she is very handy with a screwdriver!
Saturday, March 10, 2012
Catch-up (part three)
Another instalment, and this time we have arrived at Agnes' first birthday.
I can't believe my baby girl turned one last Tuesday the 6th--a whole year has blown by so fast!
She is amazing--fun, happy, adventurous, crazy coordinated, social, smiley, funny and SO beautiful. This year has been anything but easy, but watching her grow and develop has, I think, made some of the more bitter pills easier to swallow for us all. Adam has enjoyed having her around and is learning to play with her, giving her kisses all the time...Caleb loves his sister and can make her laugh so hard and so easily, and loves playing chase around the house...I have been grateful for the grounding in reality that her schedule and needs demand, keeping me focused when I might otherwise have crumbled, enjoying doing things one-handed while holding her and snuggling up at night with her bottle...and Daddy, well...Daddy loves his little girl and that's all there is to say! :)
Here she is contemplating both her cake and those goofy people singing to her--
And here she is sampling the wares..."yum, carrots!"
Part of the evening was sad because Caleb had to be disciplined and thus missed the whole cake and singing part. But, as with all clouds, the silver lining was that Caleb's absence enabled Adam to step forward and play a more central role in helping sister blow out her candle, as you can see from the video:
The funny part was that we were all totally surprised to see Adam actually blow the candle out, he had never done that before! And Agnes cried because we took the cake away--it was such a funny mix of happy and sad, but then all major moments in life really are, aren't they?
That's all for now...more instalments soon I promise!
Catch-up (part two)
Next stop on memory lane, St Andrew's and our weekend away to celebrate the end of Adam's intensive phase of chemotherapy.
We drove down on Friday afternoon, just after the boys got home from school. An hour or so of driving and we stopped off just after the bridge for a nice pub dinner, finishing up our drive by seven pm.
It was a lovely, sunny weekend--full of light and opportunities to walk outdoors, sit on benches and play on the playground.
In the evening we went on a forest walk called the Snowdrop Festival--it was put on specially by a local family and their whole estate was decorated with lights and permeated throughout by the famous snowdrop flowers. Here is Caleb "hiding" in one of the tents made by branches woven together:
On Sunday morning we accompanied Jacqueline and Ames (our hosts for the weekend) to their church where we enjoyed a traditional Church of Scotland service and a sermon about the Queen's Diamond Jubilee which is this year.
It was a great weekend and we were grateful for the Broen's hospitality and the chance to get away for the first time since Agnes' birth and Adam's diagnosis. Indeed, there was a LOT to celebrate and a lot to be grateful for still.
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