Sunday, July 26, 2009

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)

Sunday, July 19, 2009

Continue to pray for Jed 10

19th July 2009


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!!!!!"


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

Sunday, July 12, 2009

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"

Monday, July 6, 2009

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")