Wednesday, April 29, 2009

Port operation tomorrow afternoon

29th April 2009

Hi again,

After a billion phone calls and loads of frustration Ray has managed to get hold of Prof Peter Beale. He will operate on Jed tomorrow afternoon at 16h00 - No food from 10h00 (that will be easy) and no fluids from 12h00. It is always a frustration when they operate on kids late. We will arrive at the Donald Gordan in Parktown (opp DHL Parktown) at about 14h00 or just after.

Please I ask that you pray with all you have that tomorrow is pain free for my baby boy. Please!!!!

We also have an appointment with a NEW medical team on Friday (they agreed to the public holiday appointment) - Ray is pretty fed up after the run around we have had over the last couple of weeks. I am not going to comment on this and will go with what Ray decides. At the end of the day, we have to put Jed's best interests first, after all tumours don't go on holiday over Easter and public holidays unlike doctors. (Tumours also don't vote) I'm always mindful of what I say about the medical team we have had thus far, but when it comes to Jed I will not tolerate any kind of lack of care. I'd rather he was under a caring, loving doctor than the best in the country. Although we pray to get both! As you can "read" I've had a guts full of doctors today! I wish I could invent my own Janet Poole, Dr Klass and Peter Beale and keep them on call 24/7 for Jed and Jed only!

So please remember to pray for our baby boy!

With lots and lots of love
Bon and Jed x x x


29th April 2009
I NEED A DOOR TO OPEN...Father in the name of Jesus I pray you open doors for the person whoSent me this as well as those I am sending it to. Only you can open
Doors no man can close and for that we honor you today.
Thank you for The open doors of life, health, strength, prosperity, wealth and loveAnd thank you for closing the doors of death, sickness, weakness,Despair, poverty and bitterness. We love you today Lord and give youAll the glory and all the praise. I seal this prayer in Jesus nameAmen!!!If you need God to open a door pray this prayer for the person whoSent it to you and for those you are sending it to.Believe in your heart and you shall receive what God has for you.I need a door to open!God closes doors no man can open & God opens doors no man can close.If you need God to open some doors for you...send this to ten people,AndIf you don't need God to open some doors for you pass it on anyway... . Have a blessed day and remember to be a blessing

Port still not done!!! Worried mom!

29th April 2009

Hi everyone,

I'm a bundle of nerves at the moment as I am yet to hear from the surgeon regarding the port. I've become a stalker at the Gen with my numerous phone calls. Jed has had zero treatment for over a month now. Ray has just tried now and he was rudely told that it is up to the surgeon to fit Jed in. Ray has managed to get Peter Beale's office number and address; he is on his way to his offices now. If we do not have a date and time soon we will look for another oncologist and surgeon. I have already made a couple of calls.

The tumour (pig) grew 3 cm's in 4 weeks.... so we don't have time on our side, if only the doctors had the same sense of urgency. It seems they are too busy to assist.

Jed has had a wonderful couple of days, no vomiting and has some colour in his cheeks. It has been lovely having my happy, healthy little man at my side.

Please pray that the port happens soon so that Jed can continue his treatment going forward.

With love

Monday, April 20, 2009

Blood count good

20th April 2009

Hello there,

Jed's blood counts are up! Thank you to everyone for your prayers. His platelets are 223 (thousand), white cells are at 3 and red cells are back to a normal 12. The next step now is the port. Jed's blood count indicates that treatment can continue. His port operation will take place next week. Prof Poole has to confirm when the surgeon is available. We have requested Professor Peter Beale to do the port at Linksfield. He is away this week so we will only have confirmation on Monday. Professor Poole is hoping that the port will be done on Monday already (the sooner the better).

We went over the chemo risks (the plan is yet to be confirmed). It is all very overwhelming and we pray that the risks are something Jed will never have to face. He MAY get twitches in his legs and arms; his balance and walking MAY be affected; he MAY lose his hair (the radiation patch is still bald); his eye lids MAY go droopy (not sure why this is) and then the normal chemo risks of nausea and exhaustion. If he is allergic to the chemo then the risks are far more serious (but for now we hand it over to God and we don't even worry about it) We will need to keep his area (home) very hygienic during the chemo and they recommend we limit him from visitors (however we will allow people to see him if his counts are good)

The chemo will be done at the Gen. I spoke to Prof Poole about going private at Donald Gordan, she basically said it was our choice but she is based at the Gen. I will therefore remain at the Gen for the duration of his chemo. However, should Jed need to be admitted we will go over to Donald Gordan.

The question everyone is wondering now is.... when is the next MRI.... it is going to be in about 4 weeks time. The MRI will show if the radiation has worked, no matter what the MRI shows chemo goes ahead. Our prayers are that by a miracle of God the MRI shows that the tumour is gone, 100% clear and that Jed is healed. I am very nervous for the MRI and I am not pushing Prof Poole for this step.... she will discuss it with us when she is ready. Please pray about this. We have been told that this tumour can be shrunk by radiation and chemo but not completely... we know that God can do anything and with the power of positive thought and prayers we stand united in the belief that the tumour is gone!

For now, we are blessed with a full week off and no treatment... we pray that the port operation goes well and that we can start the next round of treatment.

Attached is a picture of Jed hard at work!!

Please continue to keep us in your thoughts and prayers.

With lots of love and hugs
Bonni x x x


Total Donated R 49,411.31

25-08-09 Michael Hibbert R300.00
25-08-09 Glenn Mc Dougall R6921.00
24-04-09 Anonymous (ref Jed Medical) R 300.00
24-04-09 Jasen and Jax R 200.00
24-04-09 Anthony Beckley from DHL R 500.00
24-04-09 Rachel Suckling R 3 214.97
18-04-09 Wayne and Tertia R 1 000.00
15-04-09 Anonymous R 2 000.00
8-04-09 Anonymous (Absa bank transfer) R 200.00
4-04-09 Bruce and Libby R 1 173.62
4-04-09 Soccer Gran (Thelma) R 200.00
3-04-09 Anonymous R 1 180.00
3-04-09 Mr BP Booysen R 1 197.72
1-04-09 Bianca Barr R 300.00
31-03-09 DHL International!!!!!!!! R 12 000.00
31-03-09 Crew Room Lounge R 1 350.00
31-03-09 Bernie Butler R 200.00
30-03-09 Anonymous (East London) R 500.00
30-03-09 Anonymous R 400.00
30-03-09 Roger and Carol R 2 925.00
28-03-09 Karen Theunissen R 100.00
27-03-09 Mike Perdita and Corriana Druce from DHL R 1 500.00
27-03-09 Ingrid and Greg Clarke R 3 000.00
27-03-09 Crew Room Lounge R 1 000.00
26-03-09 Crew Room Lounge R 3 770.00
26-03-09 Laurian and Dennis Seaton from DHL R 500.00
25-03-09 Topsy and Marina from DHL RBG R 500.00
25-03-09 Nancy and Donatel R 200.00
25-03-09 Anonymous R 300.00
24-03-09 Tammy Cocking from DHL R 250.00
24-03-09 Anthony Beckley from DHL R 1 000.00
23-03-09 Nikki day from DHL R 300.00
23-03-09 Jean R 250.00
23-03-09 Anonymous R 250.00
18-03-09 Anonymous R 5 000.00
18-03-09 Anonymous R 1 000.00
18-03-09 K Theunissen from DHL R 50.00
17-03-09 Anonymous R 1 500.00
16-03-09 Bonni Suckling R 100.00

Wednesday, April 15, 2009

I lost it today

14th April 2009


I went mad today, knew the day would come again eventually.... actually started on Monday morning and manifested into full blown madness this morning.... went through to Ray's room and told him I was in no condition to take Jed to the Gen and then went off for a drive. Thought about suicide a bit then realised that the immodium, Buscopan and 5 multi-vitamins (all I had) would not do the job... madness I tell you!!! Went off and had a lonely wimpy coffee and made an appointment to see the shrink, time to re-visit anti-depressants! After, the pity party I went to visit Jordi and his mom. That really did me the world of good, Michelle is so positive and watching Jordi's progress gives me so much hope. Michelle and I spoke about our faith and how we needed to stay strong. She gave me a much needed hug... only a mommy going through something similar can understand this crazy moment.

Jed's blood tests improved. Ray phoned me with the results 12.1 for Red, 3 for white and 156 for platelets... Our next blood test is on Monday next week. This is wonderful news. Although the transfusion was on Thursday - I believe the blood test results are positive sign that his body is starting to come right after the strong chemo. Ray is a fantastic daddy for taking control today!

Sometimes you hear people say and I've heard it more than once lately, "this journey you are on with Jed will be understood later on in your life. Although what you face daily is very difficult, at some point you will understand the reason."

Mmmmm. Yes, I have learnt from this experience; I have learnt to beg God on my knees; I have learnt to put my pride in my pocket and ask for help; I understand madness (first hand); I have learnt what it feels like to be extremely lonely in isolation; I have learnt what petrified really feels like; and yes, I have learnt the VALUE OF LIFE and real friendship. I have learnt that strangers can be so kind, that hugs in my personal space can be wonderful (anyone who really knows me will understand that one).

I look at what is really important - sorting the junk (some people included) from the real issues at hand. Every single minute of my day is a privilege, I don't wish the day or week away anymore, the time seems to always be going too quickly lately. My hope for you as you read my sorry--ass pages is that you breathe in life fully, you relax more, you play more and cherish your moments.....Do you really know how blessed you are to feel safe, even when your life isn't flowing perfectly at all times? That in itself is your blessing! This isn't a practice run this is the ONLY life we have.

I would always give the "lady with the kid" (ja, that one) at the traffic light, money, or bread or whatever I had at hand. I would look at her with the pity I see when people look at my son now, and I would think how cruel life can be. When I look at her now, I think how lucky she really is..... how blessed she is, how beautiful her mismatched child is and how healthy that dirty little face is,.... seriously, that is how I see it now. Don't get me wrong, I still give to her but I see her in a whole new light now! DHL was my life, I loved (almost) every single day at work and I always felt so blessed and lucky to have such an awesome job. (Jed still believes every yellow DHL Van is mommy's!!!) Now I look at "lady with the kid" and I think how blessed and how lucky she is...

We continue to ask God for Divine intervention and protection for my precious Jed, Jordi (spine cancer), Gilbert (kidney cancer), Lisa (Leukemia), Lewis (cancer), Bob (cancer) and the "lady with the kid!"

Attached is Jed, looking like a little angel, finally he can shower and wet his whole head... the radiation section is peeling but it has healed nicely!

I'm staying at the gwans until my madness improves - already missing my darling boy and it's been only a couple of hours!

Bon x x

Thursday, April 9, 2009

BLood and platelet transfusion

9th April 2009

Hi there,

All over and done for today... one day at a time. Jed is very sleepy but still playing PS2 with his dad. The grans sat with me the whole day and I thank God for them both!!!!! I'm still having pathetic panic attacks at the Gen!

Gilbert's surgery went well. I went down to see him after his operation. The surgeon removed his kidney and his dad told me he was informed that the surgery was a huge success. I left Gilbert with a couple of presents to open up when he is feeling better. Thank you for praying for him with me.

Jed's next blood test in on Tuesday and we pray his counts are up, this little man has seriously had enough pricking and poking for a while.

Thank you all so much for your prayers and support.

Attached is a picture of Jed - this one is not a happy pic, but it shows clearly the difference between the platelets (orange stuff) and the blood. Jed calls the orange power juice and the red superman flying juice..... way better than platelets and blood.

Love to you all, enjoy Easter with your family
Bon x

Wednesday, April 8, 2009

Another transfusion tomorrow

8th April 2009

Hi there,

Just got home from another exhausting JHB Gen day. Jed's blood counts have dropped again, his WCC (white cell count) is at 1 and his HBC (red cell count - as I understand it) is at 7 (both is way way below normal even for a chemo kid). His platelet count remains low at 43 (anything below 40 is a transfusion). So tomorrow we go back for a BLOOD transfusion (this is the normal red stuff - the platelets are orange).

Lots of people have sms'd and asked if they can donate blood or platelets for Jed, unfortunately the blood and platelets go through some process or other and they can't just take any ones (not even mine and Rays). My answer is yes, donate, maybe not for Jed but for some other kid. The blood/platelet shortage is serious and I ask everyone who can donate to please do it. Don't wait for them to come to you, find a place and donate!

Yesterday, was such a happy day, we played and made bead necklaces (see the picture). I just don't understand why his blood levels are taking so long to come right. Janet Poole asked me twice if I was giving him oral chemo and I told her nothing for over 2 weeks, so it is a mystery! She did say it was from the chemo and not the cancer. Let's just put it this way...(and pray it into reality), the chemo we gave him was so powerful that it killed off everything first time round and now we are waiting for him to recover and get his strength back.... Please God!

My mom, aunt and pastor are coming with to the Gen tomorrow so that I don't have to go through it alone, and we have a wheelchair now so in Jeds drugged state we can wheel him around. Also we are getting Emla tonight to numb the area before the pricking starts, so all precautions are being taken to make it as easy as possible. The grans were sent shopping for presents and I believe they went a little crazy and spent R500 on surprises; he deserves it! The transfusion will take a couple of hours so I will mail you later.

Have a blessed Easter and remember the meaning of this time. Please continue to pray extra hard for our boy, Jed; for Jordi; and all the precious little ones with cancer!

With love and hugs
Bonni, Ray and Jed x x x

Tuesday, April 7, 2009

All good

7 April 2009

Hi there,

My last couple of mails have been a little sad so hopefully this one is gonna make you all feel better.

JED ATE FOOD!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Breakfast: Tubby toast (French toast) a whole slice, lunch: Sausage and Bacon, 3 pm snack: A WHOLE yogurt, Dinner: a mini pizza and a banana purity. He also had 3 glasses of water, a juice and a bottle of pedisure. Please God let this be a turning point. Never in my entire life have I seen Jed eat so much - and ANYONE who has ever met Jed will know this is a miracle, he hates food and has done from day 1!!!!!!! I'm so delighted.... Please God let this continue....

Our next blood test is tomorrow at the gen, the red cells were also down so we are eager for those results. The transfusion went okay on Saturday. Prof Poole sedated Jed and this was much better, the trauma (on mom, dad and Jed) was way less. 3rd attempt she found a vein.... She made a comment that his veins are really bad....! Chemo is on hold and he will not have the operation to do the port until has blood levels are normal. This could take 2 - 3 weeks. We have decided to ask Prof Peter Beeld to do the operation. He did Jordi's operation (on his spine) and I have read up on him. He sounds brilliant. The next MRI is in 6-7 weeks.... We pray it is 100% clear and Jed is our Miracle.

Some more good news, is that JORDI is Crawling on all fours. I had tears in my eyes when Michelle sms'd me the wonderful news. This is the boy that was NEVER gonna walk again, if he is crawling on all fours unassisted this is a future soccor star in the making. We give thanks for your prayers for this little boy! God is totally in control!

I have attached a picture of Jed, with the worms we made during education play.... hope you enjoy, Jed made the yellow one and I made the red one!

Lots of love
Bonni x x x

Friday, April 3, 2009

Platelets down, radiation over and a weekend at the Gen! (3 April 2009)

3rd April 2009

Hi all,

I just walked in from the hospitals and radiation.

His white cells are slightly better at 2,6 but the platelets are very low again (20). I knew something was up as he got a nose bleed last night and again at the hospital... Jed generally doesn't have nose bleeds. They had no platelets available for Jed today and after many hours of waiting, we decided to go to radiation. We got a call to say they received a bag of platelets at about 16h00 today, so the transfusion will take place tomorrow morning at 10h30 - please God let them find a vein and thank you that Ray will be there with us....! Please please i urge all of you to donate blood and platelets, this kind of thing apparently happens allot. Platelets and blood go through a process and this is essential as it is checked and cleaned, you can't "last minute" donate. We asked about Ray's platelets again and were told that the platelets need to go through the process.

On a positive note, it was our last radiation session today. Jed will continue with play therapy at the Sandton Oncology Centre but NO MORE SCANNING!!! I got him a cake and we sang "Well done Jed" to the tune of Happy Birthday.

I special thank you to Janet my friend who held my hand from blood test to hospital; to collect cake; to radiation; to hospital and home! - She took the day off work and it was so amazing to have her with me..

Please pray for Jed's count and for protection!!!

We hope the Ben10 lights killed the ballies at scanning and this we ask and pray with all our hearts!

With love and hugs
Bon, Ray and Jed x x x

Wednesday, April 1, 2009


1st April 2009

Bonni dear Try to remember the word "HOPE" in that very sad poem - Uncle Joe

HOPE...I hope you never have to hear the words, "Your child has cancer."I hope you never have to hear, "The prognosis is not good."I hope you never have to prepare to undergo radiation or chemotherapy, have a port surgically inserted into their chest, be connected to IV poles.Look at you with fear in their eyes and say, "Don't worry Mommy, everything will be okay.'I hope you never have to hold your child as they vomit green bile.I hope you never have to feed them ice chips for lunch.I hope you never have to watch the "cure" you pray for slowly take away their identity, as theylose their hair,become skeletal,swell up from steroids,become barely or unable to walk or move,and look at you with hope in their eyes and say,"It's going to be okay, Mommy."I hope that you never have to stay in the hospital for weeks, months, or years at a time, where there is no privacy, sleeping on a slab, with your face to the wall, where you cry in muffled silence.I hope you never have to see a mother, alone, huddled, in a dark hospital corridor...crying quietly, after just being told, "There is nothing more we can do."I hope you never have to watch a family wander aimlessly, minutes after their child's body has been removed.I hope you never have to use every bit of energy you have left, with all of this going on around you to remain positive, and the feelings of guilt, sorrow, hope and fear, overwhelm you.I hope you never have to see a child's head bolted to the table as they receive radiation.I hope you never have to take your child home (grateful but so afraid) in a wheelchair because the chemo and radiation has damaged their muscles, 35 pounds lighter, pale, bald, and scarred.And they look at you with faith in their eyes and say, "It's going to be okay Mommy."I hope you never have to face the few friends that have stuck beside you and hear them say, "Thank God that is over with,"...because you know it never will be.Your life becomes a whirl of doctors, blood tests and MRI's and you try to get your life back to "normal".While living in mind-numbing fear that any one of those tests could result in hearing the dreaded words..."The cancer has returned" or "The tumor is growing."And your friends become even fewer.I hope you never have to experience any of these things...Because...only then...Will you understand
...Author: Carol Baan