When reality hits too hard .......

2nd May 2009

Hi,

My heart is so broken I can actually feel the physical pain. Cancer is a bastard!

Jed was admitted to hospital on Wednesday with awful tummy ache, he was screaming and shouting, "mama help me"... Ray and I rushed him to Unitas and after the blood tests we were told his infection marker was 60 (it should be below 5), his white cell count was ZERO. He was dehydrated, constipated and his system was poisoned from chemo. His tiny body was shaking in pain, there are no words to explain how I felt. He was given morphine, cortizone, zofran, paracetamol and buscopan. After watching Jed suffer for 3 long days and 3 long nights Ray and I finally had the conversation about stopping the chemo and letting God decide what his plan for our baby was. We asked the doctor how much time we would have if we took that decision and he explained we'd have 6 months at the most. The problem is the quality of those 6 months... the impossible decision. I looked at Dr Reynders and between hysterical sobs I asked him if it was his baby what he would do. He replied that he would give the doctor 3 months and see how the chemo goes, if there is no improvement he would stop as he couldn't see his child suffer. We now give the doctor some more time but I just don't see how Ray and I are going to make it through.....

I haven't been able to pray for the duration of the week as I have so much anger inside that I just feel my prayers are not being heard. I know there is no cure, I know what I can see going on in my daily life but God said he would never give us more than we can handle. Surely he knows me.......... Just pray for Jed please!....

And ... the good news is. We are home for a couple of days. We skipped chemo for last Saturday as Jed was too weak and depending on his counts he will have his treatment this Saturday. He was also given a medal from the nurses for being the bravest little boy in the hospital (i'm sure they all get one). Jed has not taken his medal off and is bragging to his dad and gwans how he won a medal for being so brave!!!! I'm actually very proud of the medal myself. I have seen a wonderful dietitian about his eating, Jed has 20% malnutrition and she is working with me now to help me build him up. He was admitted at 17.6 kgs but after 5 days of NO FOOD, only a hydration drip I wonder where we are with the weight now.... I have a smart action plan and I have already started working on it. Today he ate chicken for the first time since he got sick so maybe things will improve.

More good news, Andre Beaud will be giving Jed's first round of platelets. On the 11th of June he will be off to Unitas to make the donation. If you see Andre please ensure he is eating well and do not stress him out at all, he needs to stay well and chirping for his big day! I will be sending out a mail on the donation process and those who are O positive and read the criteria you can decide if you would like to donate for Jed. Ray and I did the donation pre-test today and I am actually on a VERY MILD and low dose of anti-depressant according to the doctor so dependant on the pre-test results we too can give our baby platelets. I will send out this mail tomorrow. What is wonderful about this process is that if Jed doesn't need the platelets on Saturday then the next child in line gets them. So they NEVER go to waste. Platelets only last 5 days. If you are not O positive and feel you would still like to donate all I can say is, you will be doing the most wonderful thing for a cancer patient. When you see a mommy or daddy running in with their child bleeding from all over as the platelets counts have dropped - there are no words to describe the sense of urgency on their faces. We have had to wait up to 24 hours before to receive platelets as the shortage is that bad. I guess people don't donate as the criteria is very strict and the process does take time. I must be honest I didn't even know what a platelet was before .... ja ja....

With the biggest request to pray for Jed and with so much love and thanks for your support.

Love, hugs
Bon, Ray and Precious Jed 10
x x x x

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