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. :)
Tuesday, November 27, 2012
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:
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.
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