We had a wild day!

Today, after days and days and days of nagging by Boeta and promises by us, we went to the miniature steam trains.  They are open the first Saturday of the month – Woutertjie has been begging for 3 weeks.

We’ve been there before but like most things pre-cancer, Woutertjie seems to have forgotten about it until he was reminded of it.  He discovered some leftover train tickets in my handbag and from that day he carried it with him everywhere and told everyone that he was going to ride on the trains.

We managed to take the camera with but then the batteries were flat.  Yup, that’s us.  So I’ll have to get photos from friends and then I’ll post.  Promise.

Woutertjie had such fun.  He is a Thomas the Tank Engine fanatic and loved watching the owners / drivers / machinists adding spoonfuls (yes, tablespoons!) of coal to the firebox and adding water and then off we go.  Carien almost fell asleep on the first trip and then realised what fun it is.  So from then on we weren’t allowed to get off the coach between rides.  Interesting.

Woutertjie is quite tired.  More than we would expect him to be after 2 and a half hours of train riding.  I think the last week of chemo and radiation is catching up with him.  Consequently I suspect we may spend some more time in hospital next week. 

But it was a very good day.  After the trains we went for coffee and pancakes at Neels and Verna’s.  Their son Hanré is Woutertjie’s bestest bestest friend in the whole wide world.  We met them at antenatal classes before the boys were born.  So technically the two 4-year olds have known each other 4.5 years.  Impressive stuff! 🙂

Neels always has his camera around so it will fall to him to supply photos of today’s outing.  Thanks Goggie! 😀

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I can’t think of a snappy title so this will have to do

I don’t think I’ve told you enough times how wonderful and supportive our family and friends are.

Tonight, like most evenings, we had ready-to-eat supper.  The moms at the play school that Woutertjie went to last year deliver frozen meals for us weekly.  I can’t begin to tell you how much easier that makes my life.  After spending the whole day in hospital the last thing I feel like when I stumble through the door is cooking.  Now my greatest responsiblity is deciding what to defrost.  Thank you to every mom involved in this.  Most of you I’ve never met seeing as I was the working mom who rushed in and out and didn’t have lots of time to stay and chat.  I don’t have words to thank you.  Your generosity is too much for me to fathom.  Thank you.

I’ve wanted so many times to take Woutertjie to school for one day.  Unfortunately I know that it will only start trouble.  He has sort-of forgotten about school – he talks about it but rarely asks when he is going.  Our fridge is still completely covered with his drawings and works of art.  The only white spots are where Carien wreaked random destruction.  That child of mine…

Today I finally realised why I feel the way I feel after spending so much time in hospital.  It numbs you.  I’m not physically tired but I am mentally knackered.  I feel wrung out and cut off from the outside world.  It makes for interesting (lack of) conversation when Wouter gets home. 

Boeta received his 10th dose of radiation today.  18 left.  We are finishing with radiation on the 15th of May.  That day will not arrive too soon.  These daily anaesthetic and radiation sessions are ageing me.  It isn’t fun to see your baby knocked out and tubed up and monitored by machines.  Being the busy body that I am, I hover over the setup like an irritating gnat.  The only times that I haven’t been with Boeta every second was when I had to make a detour to the cafeteria to get some blue chips for when he wakes up.  I tend to catch up with the procession before they get to the radiation facility though…

At the same time I am amazed at how smooth things have been until now.  I can’t tell you how much I’ve been dreading radiation and now we are 10/28 done.  It is becoming more difficult to get Boeta under though.  He hates the anaesthetic (Diprivan = milk of amnesia) because it gives him a headspin.  From tomorrow to Friday we are only going to hospital for the radiation and he will have to be drugged from awake (we try to ambush him while he is having his nap).  Please say a prayer for us.  I don’t have it in me to hold him down while he is going under.  I will if I have to because it is my job as mommy, but I don’t want to.

Before I go to bed – this morning was one of my favourites ever.  We woke up with all 4 of us in our bed and cuddled and tickled and it was heaven.  So for now I won’t give them away.  😉

He is home!

After 10 days in hospital in isolation connected to IV tubes Woutertjie is home!  The boys (Wouter and Wouter) arrived home at 8 this morning.  Boeta is currently lying on the couch twisted up like a pretzel, watching Cars and eating pretzels.  OK, he is now lying with his bum on the armrest and his head on the seat – I stopped asking questions long ago!

Just to keep the balance in the day I managed to have a shocker until now.  Carien managed to lock herself into my car.  So there she was, sitting strapped into her carseat holding the car remote and looking very impressed with herself for managing to have a boat load of adults looking at her through the windows.  And all the adults are miming their version of “press the button – no the other button”.

Eventually a locksmith had to be called in.  And bless him, he didn’t charge a cent for rescueing the damsel in distress.

Of course Wouter is trying to convince me that I am not to blame.  He is telling me that I am tired and tired people make mistakes and all that jazz.  He doesn’t seem to understand that I am unlike other people.  I am the one trying to convince people that they shouldn’t be so hard on themselves while off in the corner I’m beating myself up for not being absolutely perfect.  So can someone please tell Wouter not to interfere with my self-flagellation?  It takes all the fun out of it.

Anyway, we are at home for the moment.  On paper we should be here until Tuesday’s chemo but reality might just interfere with our plans.  So we are enjoying every moment and not worrying (too much) about tomorrow.

I’m being abducted by Annie and Stephanie (my longest and second longest friends) today.  I have no idea what they are planning but as long as it doesn’t involve hospital or home I’m fine with it!

Have a good weekend everyone!

The Facebook summaries

Eventually I will write a detailed version of the first days and weeks.  For now you’ll have to make do with the Facebook updates. 
 
16/01/09 Friday
We are back in hospital! Woutertjie had a bit of fever yesterday afternoon and the docs decided to do tests and start him on antibiotics in case of infection. Boeta’s white blood cell count is very low (0.5 instead of 5) so we are staying in hospital in isolation until further notice. Probably between 2 and 7 days. I feel caged in already and at least I can fetch tea and go home occasionally. Woutertjie is still playing continuously with his new Thomas the Tank Engine train set so he doesn’t have a care in the world at the moment. He is looking good so I believe that he doesn’t have an infection. Please pray that he stays stong and healthy and that the nasties stay far away.
S
***

15/01/09 Thursday
Woutertjie had a very good day yesterday. He was playing and chatting and just being his busy self. It is heartbreaking to see how quickly he gets tired. But after a bit of rest he continues to light up our lives. Carien looooved it that big brother bothered with her. She misses him tremendously when he is at hospital of not feeling well.

Last night we experienced another miracle. Boeta gets tumour fever and typically it lasts for more than a day. At bedtime I measured and his temp was 38.5. The doctors agreed that if it didn’t respond to meds or if it “came back” later he had to go to hospital immediately in case of infection. Wouter and I both prayed that his fever would subside and it did. From 23:30 until now his temp has been a constant 37 degrees. Praise our mighty God! We really need some rest at home.
S
***

12/01/09 Monday 21.50
I don’t have specific details yet but Suzanne assures me that little Wouter is ok and sleeping off the meds after the operation. I’m sure more details will follow as and when possible.
Thanks for the continued thoughts, prayers and support,
Yvonne

12/01/09 Monday 15:30
I am not feeling strong today. Boeta is going to theatre at 17:00 and I am scared. I know I need to see a counsellor but I am scared of cracking up. It is the control freak in me – I don’t do cracking up well.

Please pray that the operation goes well, that the tube works well and that I manage to stay calm while walking him to the theatre.
S
***

11/01/09 Sunday afternoon
Boeta is looking so much better today. He has sores in his mouth after the chemo and doesn’t want to eat or drink at all. They thought of putting a “central line” (a “permanent” drip so they don’t have to stick more needles into him the whole time) in today, but that will only happen tomorrow afternoon at 5. Please pray that the operation goes well.

Don’t mind Wouter – he hasn’t slept a lot lately and it makes him soppy. 😉 HE is the best. I’m a bad bad bad mommy who didn’t even realise that Boeta was dehydrating. And don’t try to persuade me otherwise – I am a know-it-all and won’t believe you anyway! (I’m feeling better today – maybe I’m only a half-bad mom).
S
***

10/01/2009 Saturday afternoon
Wouter has been readmitted to hospital as he has been battling to eat/drink (sores in mouth) and therefore is dehydrating & losing weight too fast. He is on drip and meds to rehydrate and bring his “tumour” fever down. It has been a difficult day for me, luckily Suzanne is feeling strong today – so we can carry each other. I guess that is what marriage is about! I love her so much.W

08/01/09
We are on our way out of the hospital. Woutertjie is very tired today. The occupational therapist was here this morning to start with play therapy to help him deal with the treatment and needles and everything. He enjoyed it a lot but only lasted about 15 minutes before he told her that he was tired and that she could join him to nap. 🙂

He was nauseous this morning but seems better now – please pray that he will start eating and drinking soon. He is running one of his strange fevers again – his legs and arms are fine but his stomach is burning up. They say it is a tumour fever. He received meds for it and is sleeping at the moment. -S
***

07/01/09
Day 2 of chemo has been happily uneventful, it has been tricky to balance work/hospital/Carien (wouter’s little sister)/broken geyser/lack of sleep etc. but Suzanne is a wonderful mother and wife and we have received such a lot of help from our folks/church and just everyone. I am sure we will have some sort of new workable routine soon. Now we are just really praying the the chemo must work. Woutertjie is peacefully sleeping – still the greatest privilige in the world to just watch him do that! Cheers, Wouter

06/01/09
wouter is sleeping peacefully at last, he has been tired and quite feverish after the chemo. We know it is only the beginning, and we can only pray that all continues to go well.

We are also very thankful for the way in which our medical aid (Discovery) have assisted us in speeding up admissions/treatment and just being there for us- some of their staff have phoned us long distance from their own homes about 21:00 last night and spent about an hour on the phone with us to make sure everything was sorted out for today! THANK YOU SO MUCH!!!!!!

06/01/09
This morning at 11:00 Wouter started with chemo. He is looking strong and devouring his lunch at the moment. Viennas and chips with ice cream for dessert. What more could a little boy ask for?

Please pray that the chemo attacks the tumour like Woutertjie is attacking his lunch: single minded and determined with no hope of survival for the target. We’ve been surviving on your prayers until now. Please keep on praying.
***

05/01/09
Urgent prayer request: Woutertjie went to the cardiologist to do baseline studies because the chemo could do heart damage. His heart is strong but there is now a tumour measuring 3cm x 3cm inside his heart. It wasn’t there last week when the CT scans were done. Please pray that the chemo will shrink this monster quickly. We are very scared but we believe that God will help us through this too.
***

04/01/09
We went to church this morning and the message was that we should be watchful and strive to grow in faith. We are striving.
Friends of ours hosted a “get better soon” party for Boeta this afternoon. Lots of fun. He started getting feverish again (the tumour causes high fevers) but it was sorted with a shot of paracetamol.

Please keep us in your thoughts. The chemo is starting on Tuesday as the doctors were having trouble with the paperwork since everyone is still on holiday. Please pray that we can finally get the treatment started on Tuesday, that Woutertjie handles the chemo well and that the tumour shrinks quickly.

God bless!
S
***

03/01/2009
Last night we had dinner and coffee with some good friends- with a strong personal testimony of how tannie Annetjie (long time friends of Suzie’s family) have been cured by God of cancer. She was literally going in for surgery and then the dr’s called her husband to say they do not understand what is going on, they thought they had the wrong patient! She was completely clear.

We thank the Lord for such testimonies and encouragement and trust him fully with the life of our son.

02/01/2009
We are spending a scarily normal weekend at home, wouter jnr is playing around and giving his little sister a hard time! Very normal! We are quite scared of what lies ahead, but have received so many messages of encouragement that we are OK, we know God will carry us all. Thanks again for all the prayers and thoughts. Wouter& Suzanne & Kids

31/12/08
What a day! Chemo will only start on Monday 5 Jan. On recommendation of the oncologist the chemo will be done at Panorama MediClinic under her supervision with our usual paediatrian for day-to-day care. We are very happy with this decision.

Good news! According to the oncologist, even though there isn’t a “good” cancer to have, the rhabdomyosarcome is a “better” one to have than neuroblastoma. Praise God!

Wishing you all a blessed 2009 with health, peace and, above all, Christ in your lives.
***

30/12/08 update:
The diagnosis was revised to rhabdomyosarcoma after yesterday’s biopsy. We will find out tomorrow what it means. We have to be at Tygerberg Hospital tomorrow at 9 to start chemotherapy. We have NO idea what to expect so please keep us in your prayers tonight and tomorrow.

30/12/08 update:
The bone scan came back clean! Praise the Lord!

30/12/08
Today we praise God for yesterday’s results and we pray that today’s bone scan will show that Boeta’s bones itself are clear of cancer. We are also praying for the results of the biopsy that will be released today. I have no idea *what* to pray for re the biopsy so I am leaving it in God’s capable, Father hands. Suzanne
***

29/12/08
Results are in and Wouter’s bone marrow is CLEAR! Praise the Lord 🙂 🙂
This is truly wonderful, wonderful news for the family!!!!!!

***
28/12/08
Today we “kidnapped” Boeta (pronounced Boo-tah, meaning boy/son) for 2 hours and went to my folks for a bit of normality. He enjoyed it immensely but was very tired afterwards. He is receiving a blood transfusion at the moment in preparation for the biopsy of the tumour tomorrow.
Thank you to everyone for praying for us and thinking of us in this very difficult time. A special thank you to the BN ladies who arranged for a heap of individually wrapped gifts to be delivered so that Woutertjie can get a morale boost every now and again.

Please pray for the doctors for wisdom and skill when they do the biopsy tomorrow. The tumour is behind his liver so it will be difficultto reach. And please pray that they will phone the paed to ask what he was talking about because they can’t find a tumour.
***
27/12/08
The bone marrow aspiration went well. Now we have to wait for results. There may be preliminary results today but the official results will only be out on Monday. Please pray with us that the bone marrow is clear.
They will be testing the bone marrow for the presence of an oncogene. Results will take 2 – 3 weeks. Please pray that they don’t find it.

***

26/12/08
Wouterjie is going for a bone marrow biopsy tomorrow morning (27/12) at 8.30am. Please pray extra hard that the results come back clear as that really would be wonderful news for the family.

**

**Basic diagnosis was made on the 24/12/2008. After a meeting with an oncologist on the 25/12/2008 Wouter’s parents were told that it seems likely that his cancer is at stage 4. More tests will be performed on Monday, 29/12 to accurately stage the cancer. Once a specific diagnosis has been ascertained treatment will commence.

FRONT PAGE

Wouter Grove is a gorgeous 3 year old boy (he’ll be 4 in April) that has just been diagnosed with rhabdomyosarcoma. The initial diagnosis was neuroblastoma but that has been revised after a biopsy. He has a lump the size of an adult’s fist behind his liver and plaques on his lungs. The tumour has also expanded into his heart.

Please send all your support, love and prayers his way – him and his family need all the strength and love they can get.

As you can imagine, the costs of hospitalisation and treatment will be soaring, so if you are at all willing or able to help the Grove’s with donations of ANY amount, it would really be greatly appreciated. If you found us through FB please put your full name (optional) and “FB” as a reference. You can of course remain anonymous if you prefer.

Banking details are as follows:

Name: S Grove
Bank: ABSA
Branch Code: 632 005
Account Number: 1058 040 564
Account Type: Savings
*at the moment we need prayer more than funding, but if you feel led to contribute funds please do so – Suzanne*

*we are very blessed in that our medical aid (Discovery Health) have been AWESOME and have really been going out of their way to assist, at this stage plse keep us in your prayers- we trust and know that Discovery will never drop us- thanks and blessings- Wouter*

Thank you for all the love and support.