Still in Hospital

30th May 2009

Jed is still in hospital and not doing well at all. The one good thing is that his temperature has normalised but he is still on Morphine 6 hourly for the abdominal pain. Bonni says he is terribly weak and has lost a lot of weight. He has not been able to have chemo this week because of his current condition. Please pray urgently for Jed, Bonni, Raymond and the three Gwans.

Love: Thelma

Hospital

27th May 2009

Jed had been admitted to hospital. He has not been eating or drinking at all today and was complaining of severe pain in his tummy. They are still doing tests to try to establish the cause. At this stage it looks as if he may have a bladder infection. If his fever keeps going up and does not break within the next hour, the doctor will be called out. Please urgent prayers are needed because his blood count is very very low. He is currently having a blood transfusion.

Thelma (Soccer Gwanny)

Chemo week 3. 23/24 May 2009

24th May 2009

Dearest Jed10 supporters,

Hell, did we get a shock - Jed's platelets dropped to 18 - aaaaaaaaaaaaaaaaaaaaaaaaaa - I knew they would have dropped but was shocked by how much they dropped by. The Unitas team worked non stop to get donor platelets for Jed but once again, we had to sit waiting on the list for our platelets. "Lucky" for us Jed's platelets were the lowest so he was first on the list. I am going to research this week on how a donor system will work. So far I know that Platelets last 5 days from day of donation; so the donor would need to be available on a Wed/Thurs (then 24 hours to process). We are going to need a lot of platelets over the next 81 weeks and I am going to ask that if you are interested in helping Jed to please contact me via e-mail (please think nicely about this commitment - you know like in all areas of your life #**@). As far as I understand you would need to be 0 positive blood group. You would need to take a half day off work as the process takes 2 hours and you can only donate once a month. Ray is not able to donate as he has been on aspirin in the last couple of weeks and I'm drugged up to my eyeballs on anti-depressants. I will let you know more as soon as I have met with the clinic.

The rest of the blood tests didn't look good... white cells at 1 (normal 5-15.00), and red cells at 8.8 (11.0 - 14.0) - Jed's doctor decided to hold off on the blood transfusion. His words were, let us protect him from blood products for as long as possible.

Jed lost another 200 grams this week. If anyone cares I gained 1.4kgs this week - due to eating Jed's scraps to avoid food waste. I started sobbing at the sight of the scale... (when Jed was standing on it).... I am now the most determined force feeder on the planet. I am doing a star chart and a good boy eating reward system. If Jed eats he gets a star, if he doesn't he gets a sad face - when the week is up I will buy him a dream toy if he gains weight. Nothing like getting him obsessed with the scale, hell it has done me no harm in 35 years...

Thank you to everyone who sms'd me on Saturday morning, it was such a nice surprise... people were thinking of us at chemo... it just made me feel so special. Next week Saturday is the big boy Chemo-Carboplatin at 550mg - this one scares me as I remember the way my baby looked after this. It is a massive and harsh chemo so please keep Jed in your prayers big time!

Jed is still doing well, he remains an inspiration to me, he is so happy and positive all the time, if he would eat I honestly believe he'd be given Saint Hood!

Jordi starts his new chemo on Monday and Michelle is also having a difficult time with his eating. Please keep her and Jordi in your prayers.

We thank God for Jed and continue to pray for our miracle.

With lots of love
Bon and Ray

One day at a time

18th May 2009

One day at a time sweet Jesus
That's all I'm asking from you
Just give me the strength
To do everyday what I have to do
Yesterdays gone sweet Jesus
And tomorrow may never be mine
Lord help me today, show me the way
One day at a time

Second chemo update

17th May 2009

Hi everyone,

What a pleasant surprise this round of chemo has been. Both Ray and I are shocked at how well Jed has reacted. We discussed our concerns with Dr Reynders at our appointment on Saturday and he explained that the first chemo is the strong one - then it is 3 weeks of a different and not so strong chemo and then the strong one again. This will continue every Saturday and will always be dependent on Jed's blood counts. His red count is 10.5 (normal is 11.00 - 14.00), under 10 is a concern so this is good news, his white cells are 2.00 (normal is 5.00 - 15.00), his platelets are 135 (normal is 200 - 450). All his counts are down (which means his immune system is down) however, we knew this and except it is part of the process. I was actually surprised that the results were this good as the chemo was extremely strong. Thank you for your prayers.

The eating is a HUGE concern Jed is now at 18.4kg (and I kept his shoes on) so he has lost a total of 600 grams in a week. The doctor has increased the Zofran (nausea medication) and Jed is now on cortisone for a couple of days. I know cortisone has all sorts of negative side effects but Jed has been so well. He is eating so much better, drinking fluids and he is full of energy. His cheeks are rosy and he looks amazing. He has had no pain since the cortisone started.... Jed is also on a daily supplement of protein, I feed this to him with a syringe and I pretend it is medicine (excellent idea I got from my sister, Shelly)

We are still very happy with Dr Reynders and the staff at Unitas; each Saturday we are amazed at how professional and caring the team are. Dr Reynders was so supportive regarding our concerns with Jed. He told us that if we are ever worried, at any time day or night, we can bring Jed to see him. He has made himself available for Jed and we feel so blessed to have such a great doctor.

After chemo Jed was so well we decided to pop into Jordi's party. His mom, Shell and dad, Wayne threw him a superhero party to celebrate the end of a very emotional and hectic radiation session. Jordi had to have a General Anesthetic daily for his radiation. The fact that this was behind them was a huge reason to celebrate. We didn't stay long but it was lovely to see all the adults in their superhero outfits and Jordi surrounded by love and support. People are wonderful and life has honestly taken on a different meaning to me. Every single day is a blessing.

Please may I ask that we continue to pray for Jed and Jordi. I have added a picture of Jed kissing his mom, I hope you like it as much as I do! .

Please add my brother to your prayers. He has (once again) been admitted for major depression which may or may not relate to his head injury from his accident in July 08. We are waiting for him to be transferred to Tara! Larry hasn't been the same since his accident, he just doesn't seem to be able to cope with reality anymore. My favorite men are in serious need of prayers. Please add my poor mom too, her heart is in a zillion pieces as her babies are all in crisis.

"Mommy you continue to amaze me; the thought of you sitting at Helen Joseph admitting your son and trying to get him into Tara breaks my heart ..and whilst you are doing all of this, you still phone to check on Jed all the time. I love you mommy and I'm so sorry that you are facing all this sadness in your life.... you are the strongest tiny person, I am honestly so proud of you mama"

Thanks to Aunty Thelma (Soccer Gwan) and Lulu (Shelly) for helping my mom today with Larry - I'm not sure what we would do without you both.

With love
Bonni x x x

With love after 1st of many chemo sessions

12th May 2009

Hi everyone,

Chemo was hectic - well not the actual chemo but the night after and the last few horrid days. Jed was terribly sick... his gran (Ray's mom) cried when she looked at him and there were times over the last couple of days where Ray and I just looked at each other and without saying a word knew what the other was thinking ......"is it worth it to put him through this..." Jed didn't eat for days and the biggest worry of all was he also stopped drinking. He slept all the time and I sat watching him, making sure he didn't choke on his own vomit. Jed's first round of oral chemo never effected him like this so this was a total shock to our system. I was so scared... I hardly slept - as he was sore, his tummy, his bum, his legs and also aaaaaaaaaaa his head.... Our new doctor has been such an amazing pillar of strength for me. I phoned him on Sunday night very panicked (yet again) and he explained that the chemo causes brain swelling and that could be the answer to the headache - also Jed was dehydrated so that was making the situation worse. Anything but the tumour. The new doctor (Dr David Reynders) is wonderful, he phoned everyday after the chemo and constantly checks on Jed - he cares!!!!!!

If you know ANYone that has ever had chemo, give them a huge hug; to all my loved ones who have been through it, ..."you have more strength than anyone I have ever met. You are a super hero.... " If you haven't walked the road - I don't think you can comprehend what this poison does to your body.... the sweats, the cold, the shaking, the nausea, the pain... horrid I tell you! At one time Jed was screaming saying "somebody is killing me mama" - it was so sad to witness.

Today is my birthday - 'happy birthday to me... " I have been blessed with two of the BEST presents I could imagine; the first is my little boy - who woke me up by playing with my hair and the other is the fact that he ate food today... It was the most amazing gift. If you offered me a million rand or for Jed to eat a yogurt - I'd choose the latter and I was granted the latter today ... he's had a yogurt, a sausage, juice and a slice of bread. Each mouthful is such a joy to witness. I now sms the grans each time he eats so they are so relieved and enjoying the moment with me.... such joys that others take for granted hey!!!

I decided NOT to take any post chemo pictures, I don't ever want to think of the way he looked and I felt that it wouldn't be nice to share that with anyone. I've attached a picture of the gwans, it is a rather old picture. These are the ladies that love and support us daily .... Soccer Gwan (my aunt) has Jed on her lap, then it is Uncle-Bob Gwan (Ray's mom) and then The Funny Gwan (my mom)

Jed has had one chemo session so only 80 sessions on this course left... only 80 hey - prayers will be essential..... the next session is on Saturday but we will chat to the doctor as the side effects also had him very concerned about Jed going forward.

I know that there is a lot going on with the economy; please know that I am praying for job security for my friends (that's each of you) and for your well-being too. As my good friend Anthony Beckley would say, "one day at a time and what will be, will be... so we live in the moment and enjoy what we have today!"

God Bless and thank you for your prayers.

Lots of love, hugs'
Bonni and Ray x x x

Chemo "one day at a time"

Hi everyone,

It has been such a blessing receiving so many messages over the last day or two on my phone. Thank you so much.

Jed has had a very hard time since the chemo. He is vomiting a lot, his tummy is running, his mouth is sore (and his butt), he shakes and his doesn't wanna eat or drink. The doctor is now monitoring his weight very closely. He is just under 19 kgs and at 107 cm he says it is becoming a worry. He explained to us about a feeding tube that goes through Jed's nose and into his tummy. I'm not going to think of that just now and keep trying to feed him as much as I can. Today he has eaten a slice of dry bread and each bite was such a miracle. He has kept the bread down. He is no longer interested in the drinking supplements as I think dairy products make him nauseous. He has also just starting drinking some coke. (bla bla bla coke no nutrients but better than nothing). If anyone has any ideas relating to food I am open to anything. I've done everything I can think of... using cookie cutters for the bread.... so i'm running out of ideas.

I'm sure that in the next day or two the eating may improve.
9th May 2009

Thank you once again for your love, support and prayers. I have attached a picture of how the chemo goes into the port, much better than finding a vein.

To all the mommys out there have a wonderful mother's day on Sunday. And to the three Gwans, Funny (mom); Soccer (aunt) and Uncle-bob-gwan (Ray's mom) - I love you all more than I can express. Your love and support is so special to me. Thank you for always rushing to be with us, thank you for wiping my tears, for crying with me, for never missing an MRI or a single operation for Jed, thank you for sitting on plastic chairs and waiting for hours on end for results, for feeding us (even if it is tranquillizers) and for always believing that there will be a miracle for our boy. I feel so blessed to have you in our lives! Happy Mother's day!

Love
Bon x x x

MRI and start of chemotherapy (not oral)

6th May 2009

Hi everyone,

The MRI is done. Thank you for your prayers, without them I would never have got through today. I was strangely calm so I can only say that it was due to your prayers. My mom never drugged me this time.

The results are.

The cystic lesion measures 1.1cm x 2.1cm in the transverse plane and 1.9cm x 2.8cm in the sagittal plane.

In essence we believe this is good news. I knew that realistically the MRI could not be clear and as Jed was vomiting a lot, my concern was that it had grown substantially. The results show that with the radiation and with the aggressive chemo we have halted it's growth. It remains at about the same size, in the same place as the MRI dated 12 February 2009 (considering this tumour grew 2.8 cm in 4 weeks this is a MIRACLE).
The MRI conclusion report reads: "There is a surgical defect in the left cerebellar hemisphere where a tumour was removed. There is no mass effect. T2 hyper intensity in the surrounding tissue (this could be due to radiation!!!!) There is a subtle enhancement in the rim of the cyst but there are no nodular lesions (praise God) however, this requires follow up. MR imaging of the spinal cord is normal with no evidence of drop metatases (thank you God)
The chemo is running through Jed now and we have been warned that it is very strong and I may have a hectic night/day ahead. At this stage I am so thankful that the Lord has given our medical team the guidance to do all they have done for my son and that thanks to HIM I still have my precious boy in my arms for yet another night.
With lots of love and hugs
Bon, Ray and Jed

Start of long road of chemotherapy

5th May 2009

Hi there,

Just an update on little Jed.

We have decided to change doctors. We met with Dr David Reynders at Unitas on Friday (yip the PUBLIC HOLIDAY) and he will start Jed's chemo on Wednesday. On Wednesday we will arrive at Unitas in Centurion at 12h00 and stay there for the night and maybe Thursday night too. He wants to monitor Jed during the chemo as he will be using a very aggressive type of chemo. This gives us allot of reassurance knowing that we will be in a safe place, should Jed have any negative side effects from the chemo.

Unitas will be our new hospital going forward and we will no longer visit the JHB Gen - there are a number of reasons for this decision. The treatment he will receive will be the same as at the Gen. There is no standard treatment or cure for Jed's cancer so no matter where we go - it will be more about the service and well-being of Jed. We will miss Professor Janet Poole and can only hope she will remain in touch with Dr Reynders and together they will support each other for Jed's sake.

I will at Unitas with Jed from 12h00 tomorrow (Wednesday) - I will be all alone at the hospital with Jed and I welcome any visitors (if you are healthy please). Please if you live near the hospital and would like to come in for a quick visit I would appreciate it. No children under 12 are allowed in an oncology ward.

I have not heard from some of you in ages. Please sms and mail me from time to time and tell me about YOU and your loved ones. I don't always answer my phone as I land up crying and I have to be super mom 24/7 but would appreciate a mail from time to time.

Jordi finishes his radiation tomorrow, he is still crawling around and making his mommy very proud. So a special thank you to the Lord for being with Jordi through his radiation; going under GA daily! Jordi is a true little champion!

Please pray the chemo goes well, attached is a photo of Jed before his port operation. He is back to his naughty self and he is finally out of pain, the eina is better!

Love
Bon and Jed

Port done

30th April 2009

Hi everyone,

We are finally home with our precious little boy. The operation went well - Professor Peter Beale was wonderful with Jed.

Jed woke up in al lot of pain and he was screaming with big scared eyes. He looked like a beautiful innocent and terrified baby! He was looking at me shouting "mama why are you doing this to me, please mama help me!!!" - I have never in my life felt more helpless and completely pathetic!!. All I could do was cry with him and tell him how much I loved him.

We had a little drama as the doctors left a needle in for the chemo but the chemo mix will only be ready on Friday - I started shouting for the nurses to take it out, it was the biggest dam fish hook needle I have ever seen. I completely lost in with the nurse and Ray had to calm me down. I was a little bit of an embarrassment but the needle was promptly taken out so my temper tantrum was worth it. They also left the drip in - which they removed again after me making lots of noise.

Jed is now playing with his new toys and is looking allot better. We are keeping him drunk on pain medication and will continue to do this until he is back to his old happy self.

Thank you so much for your prayers and please I ask that you don't stop praying for our boy. Also thank you mom, Socky Gwan and Pat for being with us today.

Attached is a picture post operation - this shows the plaster and you can almost see the port - I can see it clearly - looks like a lump about the size of a 50 cent piece!

All my love
Bonni x x x