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.

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:

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.

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.

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!!) 

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.

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. 

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.

Mum practicing with her new camera...caught me playing ball! 

My handsome shot...playing drums at the recent day out in Ellon

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:

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