One Year

23 July 2009

Hi there,

On Thursday it is one year that my wheels started coming off. I got the call at 19h00 from my hysterical mom.... "Larry has had an accident on his motobike and I don't know what happened" she was sobbing, screaming and generally being a mom in crisis. I was sitting having my second bottle of wine and debating what to do... Pietermaritzburg to Johannesburg after one and a half bottles of wine ..mmmmm with a baby in the car. I then phoned and got to speak to the chap in the ambulance and was told it was a "P1" case... I remember saying what does P1 mean? and he said PRIORITY ONE - your brother could die. I went crazy... I remember kicking the cupboard door down and sobbing uncontrollably. Over and over I kept thinking, this can't be happening I have already lost my brother Robin, please no no no ..... I arrived in JHB at 3am on the 24th of July and saw Larry laying asleep and "fighting" for his life. I remember thinking "nothing could be worse than losing my brother..... nothing".... 8 days later my son was diagnosed with a 6cm brain tumour! My two favorite boys both having head troubles.

So Jed and I decided that the 23rd of July 2009 was not going to be a sad day and we were going to some how make this a celebration of life. Socky Gwan (my aunt) was coming to visit and it was her birthday the day before. Funny Gwan had to stay behind as she had a slight cold. Socky Gwan is in remission from cancer which spread to her liver. Socky is our miracle. Jed and I decided to throw her a surprise birthday party. We made a huge Soccer cake, cookies, cup cakes, and loads of yummie snacks. Pastor Bokkie and Socky arrived early and we had a wonderful day. The 23rd of July 2009 was a wonderful day of love with my beautiful family. See picture!

Jed's blood counts were low - too low for chemo so yet again we skip another week. I don't have to explain my feelings on this as I am sure you all understand that I'm nervous about the tumour growing without the chemo. I just have to believe that if the chemo is this toxic the cancer must be having a hard time. I have to monitor my son very closely as his red cell count is at a dangerous 7.5 - the red cells carry oxygen. We take it day by day and if need be hour by hour. He has also been vomiting which is confusing me as the chemo is on hold. I do know that the side effect of his tumour was vomiting. I'm trying not to dwell on negative thoughts (this is taking loads of energy).

Jed's weight has dropped by 600 grams - he is back at 18.1 kgs. It takes me a full week to build up 100 grams but he can loose 600 grams in a week. I went looking for food supplements without more than the RDA nutrition (due to his treatment) and every dam item at dischem was about weight loss. I tell you there are too many fatties on this planet. You buy cheese and the heading says LOW FAT - yoghurt LOW FAT - I search my butt off for FULL FAT and HIGH KILO JULES. I'm trying not to stress about the weight loss - Jed had a active week last week.

I'd like to end my weekly mail on a lighter note. Jed's facebook site hit over 1000 members this week. I don't know 1000 people and although my friends and family were eager to join, it was amazing to realise the response on his "save little jed" site. I only send this mail - the facebook and blog site is the work of my Socky Aunt and mom. Anyhow I phoned my mom and said that I just could not believe how many people had joined the site. I was so grateful for the response as in my heart I hope it means they are praying for my baby. Anyhow my mother lets me in on her secret. She has been going on the site "Are you interested" - it is a chat room on facebook. She puts herself "out-there" and then when the millions of men show interest - she stalks them into joining Jed's facebook site. There is honestly no limit to a mother's love. Bless you my mommy!

I ask with all my heart that we pray for Jed's counts to go up naturally without blood products, we pray for a clear MRI in two weeks and we thank God for the miracle of Socky and Larry.

A special thank you to Barbara for the platelet donation!

With love and hugs
Bon, Ray and Jed (aka The Tens)

Continue to pray for Jed 10

19th July 2009

Hello,

The vivid honest truth is my little man is not doing great. He looks exhausted, pale and weak. He looks like a child with cancer! His treatment of Carboplatin was not given this week as overall his muscle tone, reflexes and blood counts were just too low.

Red blood 8 (normal 11 - 15) - below 7.5 is a transfusion - this explains why Jed is tired and so pale, white cells 1, and platelets at 31 - normal range is 200 - 450. I wondered why we did not do the platelet transfusion as from what I have read anything below 40 - you run the risk of internal bleeding - the doctor explains that we need to protect Jed from too many foreign blood products. It is at the point where almost every week we have had to give him blood or platelets. A special thank you to Dale for coming to my rescue and donating platelets for Jed - although it was my turn there is no way I would have been able to travel that far away from Jed. Dale I can't tell you how much Ray and I appreciate your donation. We have requested that your platelets be used for another child (as you know the demand is so great). A very dear friend of mine Barbara has offered to donate this week and that will free Ray up to do a blood donation for Jed.

Our pray for Jed, "

Lord I pray for Jed's immune system to grow stronger day by day. I ask that you protect his 18.7kg body from all infections. The same Spirit that raised Jesus from the dead dwells within Jed. With your grace and power Lord, heal him of his Pilomyxoid Astrocytoma brain tumour - guard his body and give him complete health. Please Jesus protect him from nausea and give his legs strength to run and play! Lord bless his mommy and daddy with a healthy son. I ask you this with my whole heart Lord please! I thank you for healing now Lord!!!!!"

Amen

You see I will get you to pray - just by reading these words you have prayed for my baby boy!

Thank you to Cousin Rach (I love you); Aunty Thelma, Zelda and Meg and Michelle (Jordi's mom) for the love, support and presents. Michelle the big cardboard box was a wonderful idea, we have made a super cool house with it!

No new pictures of Jed today as he is not his normal sexy self - so decided (once again) to place a baby boy picture of Jed (aged 7 months) taken in Egypt when visiting Anthony and Shirley Beckley .

Love and special hugs
Bon, Ray and Precious Brave Jed10

Thanks Andre for platelets

12th July 2009

Hi there,

Jed's blood results were no surprise, I knew the platelets were dropping as he had some very bad bruising... he looked like a little abused boy. His legs and butt were black and blue. Platelets were at 24 - his nose had just started bleeding when we got to the hospital. It was such a relief to know that we had clean platelets ready and waiting. Thank you so much to Andre Beaud for making the donation on Thursday. Andre you have given the greatest gift to my son. I am however monitoring the access to all computer equipment around the house... as i'm typing Jed is grabbing at my keyboard... it's Andre's genes from those platelets i'm telling you! His red blood was also below normal at 10 but this was good (for Jed) and due to the transfusion last week. White cells remain at zero... He had neupogen to get that bone marrow working so we hope for an increase. His legs seems sore today from the way he is walking but he is not complaining of any pain (he definitely gets that from my side of the family!! - and the sarcasm floats into the virtual world)

I've had a few down days but it is all Jed's fault!!!!! - he has been asking me very real questions. He really is super smart for a radiated 4 year old. He asked me on Saturday "mama when are my ballies going to be gone?" now I never lie to Jed, I tell him the truth as much as he can understand.... my answer was "baby the ballies are no longer 3 ballies and you only have one but it is still big so we need to still fight it with the doctors and the yukkie medicine" - he seems very disappointed with my answer. It is heartbreaking as the older he gets the more he is understanding that he is different! So i'm even more in love with him and holding him closer than ever, my precious darling baby boy who is my world.

I did my therapy session today... craft shop and coffee with Janet. Ray went to deliver a parcel to DHL with Jed - off to DUR overnight no doubt. I would not allow him to use another courier company and "we" were the cheapest for the Sunday handover!!! I enjoyed the coffee and told Janet when I was getting anxious and she told me in her strong no kuk voice that this was good for JED. She mentioned that I was with him 24/7 and me having 2 or 3 hours away from him was doing HIM the world of good. mmmmm, I did look forward to the break and it is wonderful to sit with someone who knows what I am are thinking and I don't have to pretend to be brave or strong, so if I break it is okay... she is my safe "person" (and best friend) and I thank God for Janet Beaud and her hubby!

Please prayer for Jordi who is in hospital for an infection (spine cancer), Jed (brain cancer), Uncle Bob (cancer), Andi's dad (throat cancer), Tabs (brain cancer), Angelica (brain cancer), Lefa (bone marrow transfusion), Henk (leukemia), Darrian (leukemia), Jolene (brain cancer), Kathlyn (brain cancer), Reef (leukemia),Katheryn (brain cancer), Connor (brain cancer and spine) and the new child that came in last Saturday (not sure of her name but it sounded like tummy cancer)

Attached is a picture of Jed receiving the Andre's platelets! It is my turn this week, and I will be donating for another child as I know that Jed should maintain his counts at least for another week - please feel free to join me anytime!!! I will continue to drive this forward.

With love and hugs
Bon, Ray and Jed "The Tens"

Blood again (gummy berry juice)

6th July 09

Hi there,

This past week was a little difficult with Jed vomiting and a runny tummy. I can't seem to keep up, constipation versus runny tummy... we hope that this week will prove to be better. This weeks blood results were surprising to Ray and I. The directed platelets had arrived (thanks to Trevor) and we were told that Jed would not need platelets although his counts are super low at 68 but it is red blood again this week as his count was at 8 (normal 11 - 15)... Jed is showing signs today that his platelets are dropping with some bruising on his little butt and back. I am monitoring this and will ensure he is kept still and that playtime is more relaxed. He was given the blood transfusion and we left Unitas just before 22h00 - another long day for "The Ten" family. Jed has been doing well since the chemo and we are blessed again that he is up and about! He is not complaining of any pain which makes mommy's heart very happy! Ray and I have requested an MRI to be done and Dr Reynders has agreed to one being done in 6 week. If there is one thing I have learnt about a Pilomyxoid it is NO two tumors behave the same, no cancer, or child can be compared to another... You may have the same diagnoses but no cancer is similar to another (just what I have read). I no longer look for "happy" stories I just pray for a cure soon. Please can we pray that God neutralizes the source of Jed's cancer; we pray that the doctor has given the correct chemo to knock the tumor right out; we pray for a clear MRI and that Jed is totally healed from cancer and that it never returns to his precious little body. We pray that there are minimal long term side effects from the intense radiation and the chemo. And I pray that you all continue to use the power of prayer though the Holy Spirit and my son is blessed with a long and happy life! I don't really have much news this week - but I did go out for a little while on Sunday with my friend Janet. I went to get some more "home schooling" things for Jed and some activities for him, some paints, games and storybooks (things he can do whilst keeping still). We enjoyed a cup of coffee and it was actually nice to be out - Janet understands I become anxious so she is so considerate and will always ask if I'm okay and if I want to go home to Jed. I thank God for wonderful friendships, and everyday we share with Jed - not one minute is taken for granted.

With love

Bon, Ray and Jed x x x (aka "The Tens")

Ben 10 day out

29th June 2009

Hello there,

It was wonderful to step out of Planet Cancer and enjoy a day of fun at the Ben10 exhibition at Gallagher Estates. I believe my sister and the gwans nagged the world until this dream came true. When Nicole phoned she said that Jed could invite his best friend - we decided that Jordi would be the best one to take with us... as every other kiddie we know could attend during the normal exhibition times.

We arrived at 7am and both Jed and I were super excited. Jed was dressed warm in his Ben10 jacket from the Cape Town team. Nicole from Gallagher met us at the gate and we entered through the loading area. Everyone was expecting the boys and we were treated like royalty. The area was cleared to control infection for the boys and they had the opportunity to enjoy every part of the Ben10 experience. There were jumping castles, trampolines, swings that went up and down inside the jumping castle, Ben10 movies, photo booths, games, a magic show which was done especially for Jed and Jordi and so so so much more. Jed ran around so excited - I could hardly take pictures as he was all over the place. As we moved around, the area was cleared of people (crew) so that there was no risk of germs for the boys. Nicole never left our side and made sure that we were kept happy at all times. Jed really took to her and was playing with her none stop. She is so beautiful inside and out so my son has great taste! We also got to meet "Four Arms" and "Accelerate aka Faster Guy", Jed clung to me like a monkey as the characters came close and kept his distance. He was honestly more interested in playing with Nicole. We left just before 9am and it was one of my best days ever. I had tears of joy watching Jed having such an amazing time. The management team also arranged a Ben10 gift pack with bedding, curtains, clothes, towel and a Ben10 puzzle - all with the super logo on it... Jed and Jordi must have felt so special. Jed is still talking about how much fun he had. I just can't say thank you enough for those who made this possible for my boy.

And in other news....

Ray's platelet donation went perfect on Thursday. Jed did not require platelets as overall his counts looked good. Platelets 122, Red at 10 and his white cells - immune fighters are still at the lowest levels but we are mostly indoors so I am not too concerned.

Michelle and I decided to take Jed and Jordi out to a toy shop after the Ben10 show to get him a Ninja Turtle truck, Jordi has one and Jed really loves it. Michelle suggested we go to a massive warehouse type toy shop to avoid people and we go mid day while most people are at work. Not only did the boys get to meet Ben10 but also choose a toy each. I did use the fund card for Jed's toys. He decided on a Turtle Truck, a Turtle mask, and some fighting gear (for war with dad). The toys came to about R500 and I haven't bought him much in a while so I hope no one minds that I spent some of the fund on toys. It was wonderful seeing Jed deciding on which toy to get.

A special thanks to my sister Shelly, Anthony and Norms for the support, love and gifts. I love you guys. Norms the Ben10 poster is awesome!

It was big chemo on Saturday so today we have had to deal with Jed's runny tummy, vomiting and generally not feeling great. He also has a rash on his chest that is irritating him slightly. We just pray that the chemo effects settle soon. I am speaking to a couple of other parents of children with PMA - the support has been amazing, the hardest part is when you realise the other children are not doing well; each day remains a blessing and a miracle. Please keep praying!

Overall, this has been a blessed and wonderful week, even the blood counts played along.

Attached is Jed and Jordi watching the magic show, Nicole is sitting behind them!

With love
Mom10, Dad10 and Jed10

Gummy Berry Juice

22 June 2009

Hi Jed10 supporters,

So much news this week - will try keep my therapy session short....

First and most important chemo and blood results: Haemoglobin/Red Cell count was VERY low at 7.4 (Normal 11- 15); White cells also very low at 1 (normal 5 - 15) and platelets were 98, which is low but I was very surprised by this one (Normal 200 - 450). Jed needed a blood transfusion - the red cells carry oxygen so this explains why little Jed was very breathless after doing a little exercise and very pale, even his lips were snow white. With counts this low we are very much in isolation and Granny's are back to wearing masks! It is really ikkie living like this. We have decided to do direct donor blood - blood holds for 30 days so we need to pay for it to be processed and stored. I believe it costs around R2500 (we are okay for money and if we use the blood the medical aid does pay most of it!). Ray will do the donation after he has done his platelets. Ray is doing platelets this Thursday and then he will do the blood 3 weeks later. Jed's transfusion should hold that long. Platelets are fully covered by the medical aid as if Jed does not use them they go to another child... where (for whatever reason) it does not work the same with blood... I will find out more.... this is all so new and i'm learning daily!

Jed is eating today and playing - so the blood has given him the much needed boost! We call the blood "gummy berry juice" so he is bouncing around coz he had lots and lots of "gummy Bewwy duice" and it took ages (4 hours to do a blood transfusion - platelets only take an hour)...

I did my platelets donation on Thursday knowing full well that Jed would not use them. I've got really good at knowing what Jed will need; as in Platelets, Blood or Neupogen.. I knew he would need Blood... anyhow all went well, I did faint but it was over very quickly and the team took good care of me. My blood pressure was really low at 70/50 and it was actually at 90/60 when I started so it took some nagging to allow them to put me on the machine. I have booked for 4 weeks time and I'm looking forward to helping Jed or another child. The day after my donation I felt really good. I believe that I fainted mainly due to anxiety from being away from Jed for so long and my poor diet plan!!... Remember Andre had NO SIDE PROBLEMS!! Think of what Jed goes through EVERY WEEKEND!!!! Nag nag nag nag.....

Jed's hair started to fall out like crazy last week, it was a HELLO REALITY CHECK for me - I decided to cut it really short to avoid the patchy look.. I cut on a No 3 and he is looking super cute. I was actually told that Jed's hair won't fall out with his treatment plan but the doctor says all kids react differently. I don't mind his little head being bald it is just I don't need another in your face reminder! - See our cute Jed10 with his new hair-do!

Jed weight is up by 100 grams - he was 18.1 kgs, but yet again there was a build up of pooh, it was 3 days since the last time his tummy worked. If I give him the med's for constipation he gets the runs so I'm still working out the perfect dosage. His tummy has worked today for the first time so I might have it right. Can't do too much meds, bum eina, can't do too little, doesn't work, pooh goes hard, bum tears, from lining being weak from chemo - bleeding butt is not fun for anyone.

Andre and Janet Beaud welcomed baby Nicolas on Friday night. Ray looked after Jed and I went through to meet the little man, he is gorgeous and so perfect. Janet is doing very well. Nicolas was born at 2.4 kgs. I sat holding him and thinking of Jed when he was born, the dreams we have for our children..... that I still have, and that I hold onto all the time..Lord heal my baby please!

My sister, Lulu (Shelly), sent an article to "Your Baby" and it was published in the letter section in the July Issue on Page 8, it is actually what I wrote for the blog. Thanks Lulu, you never stop amazing me with your constant dedication. I see your next mission is trying to get Ben 10 to make a private visit with Jed. I love you Lulu!

Happy Father's day to all the daddy's out there, remember how precious life is and how blessed we are to have our wonderful children. Dad, to you I say Happy Father's Day and although you can't speak about what is happening I somehow understand... no words are okay daddy.... just know I love you!

Ray, you are the greatest dad!!! Thank you for dedicating every single weekend to chemo, for cleaning vomit/pooh with me, for holding Jed's hand and keeping him happy through the craziness we face... thank you also for taking us into your home and supporting us! Thank you for playing Ninja Turtles on PS2 over and over until it drives you nuts whilst pretending it is the greatest game on earth; thank you for sword fighting before you have even sat down every night; thank you for playing doctor/doctor (a game that Jed is way too good at) .... Thank you for being my friend after all we have been through.... You are the WORLD'S GREATEST DADDY!!!

And..lastly, please pray for Jed, Braidy (who has brain surgery on Wed, we are fasting on Tuesday for him), Larry (my brother), Erich (also a Pilyomyxoid, that he regains the use of his leg and arm soon!!!!) and Jordy (he has chemo on Friday again)!

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

Chemo No 5 - 76 left

15th June 2009

Hi,

Jed's chemo went very well. No vomiting. Your prayers are working!!!!

Blood results: White cells at 2.06 (Normal is 5 - 15), his Neutrophils and Lymphocytes (Viral and Bacterial fighters) were VERY low so he had a Neupogen shot - this brings up the white cell counts; making the bone marrow work harder.... Red cells at 9.3 (Normal is 11 - 14), this is slightly low but does not warrant a transfusion - just means Jed will be a bit tired this week and grumpy. Platelets were at 125 (Normal is 200 - 450), Jed did not need Andre Beaud's platelets as they only do the transfusion if the platelets are about 40 or below. They try protect the kiddies from foreign "blood" products as much as possible. Andre's platelets were there and ready but would be used for another child. What a gift!!!! My platelet transfusion is this Thursday and I am 100% sure that Jed will not be needing them as his platelet count is very "good". I'm donating for someone else and yet I'm just as excited to do it. I'm hoping that you guys find it in your hearts to start donating for these children too. Please... nag nag nag.... If you want any more information on this please call me anytime or just drop me a mail. This is my way of promoting something we can do that can help Cancer Children live a longer a better quality of life.

Jed gained 200 grams, i'm sure this was a massive pooh as his tummy did not work for 3 days, but as Judy the dietitian was congratulating me I decided to suck up the credit for it... I have worked very very very hard on his eating and I enjoyed the praise. Jed is now 18kgs... 2kgs from goal weight! Jed's supplements for the week cost me/us/you R368 - I thought that was rather expensive for a little guy but they are working so it is worth it. Although I'm moaning about the expense it is Jed's fund paying and not me! I got the name of the supplier of the supplements and they agreed to give it to us at a much lower price (so if you know of anyone needing supplements I have contacts)

Jordi is out of hospital and back home doing very well! Thank you to everyone who prayed for him during his stay in hospital. I saw Michelle on Friday and I think she lost about 5 kgs while Jordi was ill. She really looked thin (gorgeous but thin)... I'm still living on Jed's scraps so my weight is rather healthy.

As for me, I'm doing okay, been crying lots this weekend and trying to figure out the answer to my questions of ...why me, why ANY of these beautiful children.... bla bla.... just feels like i'm living a nightmare and that at any moment someone is gonna tap me on the shoulder and go.... ha ha just kidding this isn't your life...wake up wake up!

Please keep praying for us and keep our faith going....

Love and so many huge hugs
Bon, Ray and Jed x x x