MRI tomorrow

1st December 2009

Hi guys,

Firstly stop what you are doing as I'm sure most of you will read this around 8am tomorrow and at that time Jed will be having his MRI - this MRI will determine if the Carbo/Vinc chemo is keeping his tumour stable (although we pray for shrinkage or a total disappearance). Ray and I are both very nervous for this one.... I'm scared because of the "break" in treatment when Jed's appendix burst HOWEVER we need to keep our thoughts, minds and hearts positive... we need to believe and focus on a positive outcome for this MRI. Jed is healed!!!!! (say it over and over)

And as for this past week.....

Shoe wee this has been an awful week. We lost Christopher Beets and Rene - I don't have words to express the pain I feel. Rene's death has hit me really hard. I have not been able to scrapbook for "her" since I heard. Irma and Jan are very heart sore as are all the staff and friends/family at Unitas. These people/children become family. We share our "home" away from "home" and when one child goes it is like another chip off your already smashed heart. I don't know how I'm going to walk past room 9 and not think of Rene.... I don't know how I'm going to cope without Irma's company. Oom Jan's "melk coffee" will no longer be my hospital treat.... I feel so heartsore. Rene was given 3 months to live 9 years ago.... a true fighter..... I'm gonna miss her so much, my eyes are sore from sobbing.... (alone in the bath or early hours in the morning)!

Bob (Ray's mom's boyfriend) is loosing the fight to cancer.... the suffering is beyond torture and I pray the Lord takes him tonight....

As for my other family drama of this week.... no comment other than.... ma it is nice to have you with us, you are a blessing - please stick around and remember I love you and need you so much!!

Nothing else for now, just keep those positive prayers coming through today, pray that Jed's mommy and daddy get through the long long long hours waiting for the results.

Love and hugs
Bon, Ray, Jed and Vusi

2nd December 2009

Hi everyone,

MRI scan is done.

The tumour is stable - in other words there is no change. The doctor noted some enhancement but this could just be a little of the contrast hi lighting in the damaged (surgery and radiation) area of the cerebellar (back of the brain).... so how do I feel; thankful, blessed and smiling knowing that for another 3 months we can rest knowing that the chemo is keeping this bast*rd still....

We continue to believe that our miracle is around the corner and that one day we will stop chemo and live a normal life... but until then, we keep praying, we keep thanking God for another day, another week, another Christmas..... I will meet with Dr Weinberg and discuss the scan in more detail - I may include Dr Snyckers if I feel I need further explanations or options.

Thank you to everyone that prayed for my baby..... Ray, Vusi and I are so thankful for the love and overwhelming support.

Becks, I'm dancing and feeling happy - and still plodding in normal mode (shock!)

On Friday I will attend Rene's funeral - pray for Irma and Jan..... this is going to be a difficult day for all of us! I feel that she may be chatting to the Lord and handing out firm instructions for miracles from heaven.... I missed her so much today!

Love
Bon

Chemo on Monday

24th November 2009

Hi,

Jed has been getting some fevers but nothing too hectic. His red cell count is low at 8.5 - which explains why he is sleeping through the night - well he did last night. His white cells are at 4 - still boosted from the neupogen shots and his platelets were at 98 - this is due to the neupogen and hopefully the Shark Liver Oil is working for him. Jed had Vincristine (chemo) yesterday and seems to have responded well. His legs are sore and he is not managing too well with the swimming at the moment. I have requested that today Sister Fiona cuts his swimming time down. Yesterday after 10 mins Jeddy was exhausted and just wanted to come home..... His infection marker is at 9 (just a cold) but Dr Reynders has sent away a blood culture... We have the "trolley" (Mel's old pram) and the push bike (with a handle) so if we go for a "walk" he has "wheels" and can relax and enjoy while mommy does all the work....

Christopher Beets is still not doing well at all. Please may I ask you to send the prayers - I have been told that it comforts his mother. Just knowing people care gives you enough strength to get through another minute, hour or day... they are going through every mothers worst nightmare so please do send a prayer or just some thoughts to Lauren. Mails can be sent to me and I will forward them on. To my special friends who have sent - I thank you so much!

We are doing Jed's MRI next Wednesday the 2nd of December 2009 - I just don't have the strength try sound chirpy as this is really playing on my mind. I hope that one day the MRI's get easier but for now I feel like I have a ton of bricks on my whole body and the pain in my heart is physical. I seem to be holding back tears all the time. Yesterday I went for a shower and took Vusi with... I sobbed and sobbed... Vusi was a great comfort.... YES I SHOWERED WITH MY DOG! Vusi is having an operation in 2 months time, the vet say that they have to cut the lump out as it could turn to cancer (I hope this means it is not cancer now). Even my f'ing dog is giving me a hard time!


Jed and I are off to the "reach for a dream" Christmas function on Thursday and Jed has written his Christmas Wish list to hand to Santa. Top of the list is a fish.... so ..... i wonder how Father Christmas will feel about a fish (I already know how dad feels about having another pet in the flat)

Please keep all Jed's friends in your prayers (the J team) Jed, Jarry, Jordi, Jono and the others, Rene, Reef, Lefa.......also I ask for prayers for Larry my brother, he is on a huge suicide mission - as life just does not seem worth it for him anymore.... He is so different since the accident and I can only JUST manage to hide my frustration as my son fights for his life - my brother just wants to end his....

If anyone is keen to do a fund raiser for Jed and Jordi (he needs a new wheelchair urgently) please let me know. I can provide a list of all expenses for the boys and trust me it is rather a heap to manage when one parent is no longer employed. Anyone who knows me, knows that I HATE asking so please just arrange something for my boys and don't even mention it to me... Jed's account details are on facebook and the blog. Facebook is "Save little Jed" and the blog is http://jedjourney.blogspot.com/

Attached is Jed and poor little Vusi - they are still cuddled up sleeping as I type this... the bond is so sweet.... Vusi is very tolerant!

Love and gentle sad hugs
Bon, Jed and Vusi

Fifth birthday Party at Shelley's house

17th November 2009

Hi there,

Yesterday was chemo - it is now moved to Monday's as it just fitted in with Jed's blood counts. Although Jeddy is full of flu the doctor went ahead with the Vincristine dose. Jed's blood counts were good due to the neupogen injections which I have been giving.

When we arrived at Unitas I saw Rene and had a "moment"... tears, snot and totally cracked.... then Vera from Cansa tells me to go to room12 for a therapy session... I am immediately "cheesed" right off. I was not in the mood for the ..."so tell me how you are feeling" kuk... but Vera doesn't take no for an answer. I marched off with my sulky face to room 12 only to find a massage lady waiting for me who did not say a word. I got a full back and neck rub and it was amazing. After that I had my hair cut (even shorter) and a blow-wave - a luxury I don't seem to ever find time to do... it once again, reminds me that there are people out there who do care and make a difference. Here is a thanks to the two ladies who volunteered to cheer the Onco moms up with free treatments.

Dr Reynders (aka Dr Rain-Deer) has confirmed that the MRI will be done in 3 weeks time. Naturally I have a bad case of PMS (Pre-MRI-Stress). The conversations in my head are driving me crazy and there seems to be no silencing them. I have the reasonable, hopeful and religious Bonni believing in the miracle and then there is the over-stressed paranoid Bonni picturing growth - I try to silence them by keeping focused on the now.... and the now is great. Jed has hair, energy and is strong enough for chemo. All we can do is pray that the MRI shows shrinkage or no sign of anything but normal brain tissue... oh God PLEEEEEEEEEEEEZZZZZZEEEEEEEE.....

Please may I ask that you pray for Jaryd (his 5th block of chemo started yesterday). We pray for a leg save and that NO physical damage is done to his leg - Jarry has Ewings Sarcoma. Rene is next - I have started making a scrapbook for her mom on her life; whilst making each page I grow to love this little girl more and more. Rene has a rare blood disorder and her body is rejecting her blood, on Monday her HB (red cell) count was 5.8 - she is bleeding from everywhere, ears, mouth, nose, her vomit is pure blood, so a miracle is really needed for my precious friend Irma and her baby Rene.... Reef is back in hospital with an infection marker of 200 - pray for strength for his mommy who was so excited to go home with him only to return 2 days later. Pray for Connor, he needs a bone marrow transplant as his AML blasts are at 6% meaning the chemo is not getting him to full remission... his sister Megan is hopefully a match if not I will be "toy-toying" (is that a word) for you all to get checked! Jono and Jordi are doing well - yippee.

Attached is a picture from Jed's birthday on Sunday - we got a Ben10 Four arms cake and spent the day with family at my sister's house.... thank you Lulu you are the best!

Love and gentle hugs
Bonni

My fifth birthday

Hi there,

Went for bloods again on Saturday and again Jed's counts are too low for chemo. His platelets are not recovering. He is full of bruises but in very good spirits.

I just watched him open a few of his birthday presents this morning - what a gorgeous little smile. Today my baby is 5 years old. Jed has given me the best 5 years of my life. I have learnt what I now believe to be the real meaning to life and he has forever changed me. I cherish every moment I have with him and I will never stop praying or believing in a miracle for my son.

Happy Birthday my love...

My precious little boy,
You are my pride and joy,
You are the perfect son,
I feel I have already won.....

For the ballies in your head,
a million tears I have shed,
And when it gets too hard at night
you wrap your arms around me and say "mama sleep tight"
Oh God please make this right....

Your soft little touches and gentle kiss
turns my hell into a peaceful bliss
I love your smile
I hear your tears
God knows my fears
Dear Lord I ask for many many more years

You make the sun shine on every cloudy day
I wish I could cuddle your pain away
Jesus please let my baby stay!

Creative juices are awake it seems......Happy Birthday my Snoekie Nocks..... I love you my baby.

Prayers for platelets to go up urgently required! A LP will be done on Monday next week to determine what is up with Jed's bone marrow. But until then I have asked for a complete break from hospitals, doctors, chemo, and cancer. This week I celebrate the joy of my son turning FIVE!!!!

Off to the zoo with Granny Barbara and my very own monkey!

Love and gentle hugs
Bonni

General update of Jed

18th October 2009

Hi there,

On Friday my mom and I took Jed for blood tests.

He started bleeding from his nose and mouth. I was calm when it first happened but when the blood started pouring out of his nose and mouth we decided it was time to take him to the hospital. Blood tests showed that the HB counts were low and his platelets were at 32. We arrived at 11am and knowing that my donor platelets were not going to be ready till Saturday (thanks Barbara my special friend) I was very nervous about how long we would have to wait, knowing there is a shortage of platelets and that Jeddy was losing blood. Lucky for us they arrived at 15h00 and they were transfused successfully and I was able to take Jed home for the evening.

So no hospital visit was needed on Saturday as all counts were done. I will keep monitoring him as I am concerned about the low HB count.

I went with Michelle and Jordi to see a surgeon on Wednesday to determine if there is anything that can be done for Jordi to make him mobile. The doctor explained that a series of operations would be required to enable Jordi to stand and walk. He told Michelle that Jordi would never play sport or run around like a "normal" little boy. Michelle was heart broken... she has however but her faith back in God and is now working extra hard to build up Jordi's feet with the help of a Physio Therapist. Surgery is on hold for the next 3 months as they work on Jordi's overall strength. If God can heal a tumour wrapped around Jordi's entire lower spine, then getting him to walk is no big deal for the Big Guy!

I saw Reef briefly on Saturday. Lydia was allowed to bring him out for a couple of minutes. He is swollen and bloated - he looked very uncomfortable but all of this is part of his bone marrow transplant process. I was allowed to kiss his little foot which was blue from the low oxygen levels. Please keep this little man in your prayers. He has a wonderful mommy and daddy waiting to watch him grow up!

Jed has started doing Physio in the pool with Teacher Fiona and he is loving it. She is working on increasing his muscle tone and getting him stronger. It is such a pleasure watching him splash around in the pool. He is very good and seems to be having so much fun. Vusi and I sit and watch his every splash - it lasts about 30 mins and we go on a Tuesday and Thursday. I'm hoping Jed will be strong enough for this Tuesday so please keep him in your prayers. Fiona commented that the right side weakness is not at all noticeable and it was the BEST compliment "I" have received in a long time. Let us hope as he gets stronger his little hands shake less and there is zero damage from radiation and surgery! See the picture attached of my brilliant son!

I have been advised to take him for OT and some more play therapy - it is on this week's "to do" list - please pray I find the right people that Jed will enjoy working with.

Hope you all have a great week and thank you for the continued love and support.

Love
Ray, Bon and Vusi
dx August 2008 JPA (cerebellar hemisphere - left)
Brain Operation (8 hours)
January 2009
Brain Operation (9 hours)
February
MRI showed cancer was back and at 3 cm (3 nodules visible)
31 Radiation session with temador chemo
August 2009 Appendix Burst
Emergency surgery
Currently on Vincristine/Carbo protocol at Unitas in Pretoria
at last MRI the tumour was stable with no clear nodules - our first miracle!
"In God we Trust"

A healthy naughty boy

Hi there,

Blood tests on Saturday came with the normal frustrations of waiting for the results. Jed was once again a little darling. No tears when they pricked him and only a full when they removed the plaster - well I removed it. All counts were low but not low enough for a transfusion (yippeee). I am a little concerned about his on/off nose bleeds but I refuse to let anything negative creep into our very positive couple of weeks. Jed continues to do fantastic, he even has hair (a little) at the moment. If you didn't know that Jed had brain cancer - maybe - just maybe - you'd think he was just another naughty 4 year old.

I haven't posted an update on the visit to Dr Snyckers, for a number of reasons. It was not the most positive of experiences.... he did not overwhelm me with his charm. I was warned about the lack of charm but if I am gonna trust you with my child's life ..a little charm would be nice.... surgery is currently not an option. I wanted to meet him and I did... If surgery becomes essential at some stage I will re-look at that decision. And Secondly, I believe that Dr Weinberg knows the way into Jed's brain and if ever we needed to re-visit surgery I think my gut would go back to the man who has saved Jed's life twice. Just pray that we never re-visit this decision. The visit to Dr Snyckers is checked off my to-do list. The man is a wonderful surgeon and now he knows about Jed... that was my objective so for now it is done.

Today I woke up feeling rather down, missing the normal things like shopping, working (oddly, i enjoyed that), my garden, friends and just living.... but the day ended well... Jed, Ray, Vusi and I went to have professional photo's done with Cathy Heaton. What an amazing photographer and person. I even had my make-up done. Jed was the perfect little model for his photo shoot... Cathy saw Jed's article in "your baby" mag and joined his facebook group (Save Little Jed) and we became friends. She offered to take pictures of Jed as a gift - what an amazing gift by one of the most talented photographers. I hope you enjoy seeing them as much as we enjoyed having them done. Jed had such a great day that when we left the quiet northern estate he threw a mighty EAST RAND tantrum. I was most embarrassed by his behaviour and when I spoke to him about what he did, he told me it was not his fault he was upset because Vusi was sad to leave the house. mmmm


If you would like to see more of Cathy's work visit http://www.cathyheaton.co.za/

Please remember our boys and girls in your prayers..... also the mommies of angels.

Love
Bon, Ray, Jed10 and Vusi
"In God we Trust"

Jed doing fantastic

7th October 2009

Hi there,

Thought I'd send an update out quick.

Jed had "big" chemo on Saturday - all counts had come up nicely and he was ready for the treatment. I am a very proud mommy; as Jed did not cry once on Saturday. I watched him lay like a soldier as Sister Hannie put the scary port needle in; I watched him smile as she removed the butterfly clip from the port and then I watched him laugh as I clapped...the pride just flowed out of me... he really is a brave brave boy. Saturday night was crazy post chemo with night sweats, vomiting and a hectic nose bleed. Sunday he started to improve and today he is on zero nausea medication and is playing (full of energy). This is only by the grace of God - I can't begin to thank you enough for your prayers.

And some additional prayer requests:

Jaryd - Ewings Sarcoma currently in hospital with an infection.
Reef - Leukemia - undergoing a bone marrow transplant - the youngest child in the country to have a bone marrow transplant - in total isolation with a rash and he is swollen up at the moment. His mother has flu and is not allowed near Reef until she fully recovers - Please pray for her speedy recovery so that she can be with her baby soon - she must be so anxious
Siyabonga - Lymphoma - out of ICU and back with the Peds team at Unitas.... he came down on Friday night and gave a weak thumbs up to everyone - on Saturday he started walking
Jordan - Spine cancer - paralysed - we pray that he remains cancer free and we ask that his mom gets answers regarding his legs soon. He is crawling on his knees at the moment so our prayers are for his FULL recovery - this little man deserves to run around....
Jono - Leukemia - currently he has blood clots
Tina - blood disorder - not doing well at all - her brother Mark died at the age of 8 with the same disorder - we pray for her healing - she is paralysed on the left side.

Rene - blood disorder - we pray that she continues to live out her miracle life - she was given 3 months to live - 9 years ago - she has had over 1000 platelet and blood transfusions... she is alive with zero bone marrow and continues to amaze the medical profession.
Erich - PMA - brain cancer - currently using quantronics and we pray for his tumour to remain stable...
Ithuteng - URGENTLY needs a bone marrow donor - Leukemia relapse.
Lefa - Stem cell transplant - currently doing well

I thought I'd just keep you all busy praying for the kids in need of prayers at this moment... there are many more but for now these are on my heart. These children and their parents have become part of our lives.

Please keep Socky Gwan (my aunt) in your prayers as she goes for her CT and Bone Scan today. Breast Cancer with spread to Liver - we have to have a clear scan! Attached is a photo of Jed playing with Vusi in his little pool. The picture was taken yesterday (just look how great Jed looks) at the gwans house (Socky and Funny)

Love and hugs
Bon

Loving being a mommy

26th September 2009

Hi there,

I have been screaming for a break and I believe I finally have got one. YES! We went in for chemo on Saturday and Dr Reynders decided that Jed's platelet counts were just too low to go ahead with the Vincristine/Carbo chemo. Red cells were in the normal range at 11.5 this is largely due his blood transfusion last week but also explains his energy levels and fantastic mood; his white cells are just below normal range at 4.64 - higher than ever. The main concern is his platelets at 66. Generally we don't give chemo unless the platelet count is above 75. We had platelets available (thank you Barbara) but the doctor explained that Jed's bone marrow could become lazy and that "it" needed to work to get the platelets up without a transfusion. Now the up side to all this information is I HAVE A HEALTHY LITTLE MAN who is chemo free for a week. - there is a down side to no chemo but for this week I refuse to focus on that... I want to enjoy my son!

With this.... it means our isolation is not as strict; so we went off for a day in the sun and loads of fun at Jordi's house!!. We had a fantastic Sunday and one that will go down as one of my favorite days ever. The weather was perfect and the food was delicious. Ray and Wayne made a braai, while I swam with my little man. Jordi had two other friends over and it was amazing watching Jed interact with them. In fact, Nobi (one of the friends) is coming for a "sleep over" tonight. Jed is so excited. The simple things I once took for granted, like my boy playing with other kids..... I'm more excited about the sleep over than the kids!!! I have plans to make tents, a picnic, TV games etc etc!!! Attached is Jed and Nobi having a swim at Aunty Shell!

On Wednesday at 15h15 I finally get to see Dr Sneakers (spell??) at Milpark. I have been told over and over that this is the best neurosurgeon in SA. It has taken 4 long months of waiting to see him. i want to show him Jed's latest MRI scans and discuss what he thinks of the tumour location and surgery options (IT IS JUST A DISCUSSION) - at some point it may be a discussion Ray and I will have to re-open and I want to ensure I have the best on hand, who is well informed and willing to take Jed as a patient. I however, don't want a surgeon operating on a tumour I want him operating on Jed; the boy; the little man; my son and if I feel that he is in fact cold and distant we will return to Dr Weinburg. Treat the child not the cancer! Make sense??? To me it does.....


Jed has not complained much about abdominal pain lately... please keep praying that the blockage has just healed by the power of positive thinking and God!

Now onto a serious note, one of Jed's friends Siyabonga has been sent off to ICU. I phoned the ICU unit about 5 mins ago to find out how this precious little man is doing and I was told that he is slightly better than yesterday. The information is limited from ICU as I am not family (although I spend more time with the onco kids than my own family, aaaaaaaaaa)... This however does not mean that Siya is out of the woods, he still needs our prayers. If an oncology child goes to ICU they sometimes don't come back...... and pneumonia is taken very seriously if you don't have a strong immune system. I understand his mommies fears and I wish there was some way I could help her ...but the truth is if it was me sitting on that ICU blue chair I'd want everyone to pray.... so I hope that by asking you to pray for him - I am somehow helping her.... He is in my prayers today big time.

As always remember the J's - Jed, Jordi, Jaryd, Jono and our Reef, Lefa, Siya, Rene, Darian.... and every child and adult effected by cancer. Pray for a cure, pray for healing and pray for the parents!

Special prayers for Bob (Pattern Gwan's boyfriend) with cancer - he too is not doing well!

In God we Trust

Love and gentle hugs

Another hospital stay

21st September 2009

Hi,

At around midnight on Thursday, we rushed Jed to Unitas with terrible tummy pain. We arrived and the sister on duty had to prick Jed 4 times before she got the port needle in to draw bloods. My baby screamed and cried with the most excruciating pain. I felt the same as always - totally helpless. At 4am he finally drifted off to sleep in his mommy's arms but rolled around in pain - even though the pain medication was at the max level. Friday we spent the day doing x-rays and a CT scan. Jed was given Iodine to drink but unfortunately he vomited most of it out (I don't blame him it tastes horrid). We did x-rays hourly to follow the contrast and then the CT scan but because the iodine was vomited out it was really difficult for them to read the scans clearly..... The doctor has not confirmed if it is a partial blockage in the intestines or inflammation in the intestines. He was treated for inflammation with cortizone, pain medication and laxatives. If Jed's tummy does not improve Ray and I will look for another opinion, as this seems to be a continuous struggle and we just don't understand the reason behind it..... - AS IF BRAIN CANCER IS NOT ENOUGH!

We arrived home just after 12h00 today and I'm still feeling rather anxious and angry.... yip angry. I don't seem to be able to shake the anger I'm feeling inside. Seeing Jed screaming in pain is torture of the very worst kind - and WHEN DO WE GET A BREAK - as he starts improving boom another bump in the road... kuk kuk kuk! Wish I could just scream ...................

Jed's blood counts look awful; red cells at 7.6 (transfusion was done); platelets at 58 (poor little boy) and white cells at zero!! So isolation and confinment!

I hope that the way I feel is going to ease up soon.

Please pray today for Jordi's MRI results. He went in at 6am - MRI was done from 8am till 11am.... Michelle and Wayne are now waiting for the results. I'm so nervous but I'm trying to be strong and positive for my darling friend. I do believe we will get good results and as Michelle always says.."In God we Trust".

Reef is doing better from what I understand; he has started to eat a little and his temperature is stable. The response to the platelet donation for him was amazing, thanks to everyone involved. Please keep this little man in your prayers too.

And the other's in the ward, Jono, Rene, Itutheng, Caiden, Siyabonga, and every child with cancer. We pray for medicine to advance and for everyone to be aware of this horrible sickness.

And as always pray for my baby boy, there is no greater love than this.

Attached is the reunion of Jed and Vusi....

Love
Bonni

Pain in legs

14th September 2009

Hi there,

Jed's bloods looked good. Only concern is red cell count is down to 8 - I will just monitor this.

Jed's is having terrible pains in his legs. I was beyond stressed as I was convinced this was tumour pressure but after chatting to my on-line support group - I believe it is the Vincristine-chemo causing this problem. On Saturday Jed could not walk at all, and it was the most heart breaking thing to witness (makes me realise Michelle's pain watching Jordi). But on Sunday he started using the washing basket as a walk aid and pushed it around to take the pressure off his feet. After a hot bath, massage and some panado Jed was walking on his own by mid day. Today he is sore but is walking with the washing basket (filled with toys and Vusi) and sometimes on his own with his feet wide apart. I guess the doctor will need to decide if the Vincristine dosage may need to be reduced. PLEASE pray that this sorts itself out and that Jed is running around by tomorrow. Doctor suggested another MRI (if no improvement) but I'd rather wait. No more contrast in my son's body for a while if I can avoid it.

It has been a horrid couple of weeks for me and all of sudden I am afraid to be alone (freaky). Anyhow I have one of Jordi's helpers coming in 3 times a week to help me cope! She plays with Jed most of the day and just keeps me company. I feel that I shouldn't be having this kind of luxury given that I am not working but I need it for a while. I am just so paranoid and yes, scared! As soon as I feel up to it I will reduce her days but for now I just can't be alone; I even nag Ray to come home early... annoying Bonni. Jed is my joy, my life and not feeling confident to handle a stressful situation is heart breaking.... but for now i have help and I will be fine!

Please pray for Jed's legs, Jed's cancer, Jed's mom, dad and dog too.

Prayer requests for Reef (below is an update from his gran re his bone marrow transplant); Jordi (MRI on the 21st of September), Jaryd (Ewings Sarcoma), Lefa (ALL), Jono (ALL at the age of 16), and all the other kids (please include the angels Reagan, David, Kelly, William, Luther and Nicole)

Love and hugs
Bon

Jed's progress post appendectomy

8th September 2009

Hi there,

Finally home!

Jed is doing well, I actually didn't realise that my son was so strong, he continues to amaze me. Jed is 4 years old and this appendix was his 7th operation (grommets, adenoids and tonsils, dental work, 2 9 hour brain operations, port, appendix with drains) ....my brave and amazing little boy. I admire him more than I have ever thought it possible!!

He is pain free and medication free. Our only concerns at the moment are his appetite as his weight is at 16.8kgs, I can't push or force him to eat as the food will just comes up or out (both sides are giving problems). I'm just giving him teaspoons of supplements and he is holding it down. One sip at a time. He is up and about, walking at a slow pace and today we will attempt a little exercise. Chemo went much better than we believed.

Please pray that he continues to amaze us with his strength and to thank God that Jed is with us. For anyone who does not believe in miracles read up about a burst appendix for over 24 hours; then think about it happening to a child with a white cell count of 1 and a red cell count of 9 that is on chemo - in other words no immune system. His infection marker was over 200 - only prayers and Jesus got that count down!

Also pray that Jed's tummy starts to work as it should. I won't go into too much details but my hands are raw from washing his shorts! A task that is my honour but it would be nice for Jed if this came right soon. He gets very embarrassed.

Vusi the dog is our little bundle of joy and Jed was delighted to see him. We have had to take a few precautions with Vusi but the vet has sorted it all out.... I refuse to take this puppy away from Jed as he now has a best friend to play with.

The list of people to thank is just too long. Granny Barbara for the love and support; Granny Pattern and Socky Gwan; La; Michelle, Wayne and Jordi; Alida (my sakka sak); the folks at Ster who prayed non stop; for Pastors Rameesh and Bokkie who listened to me sob on the phone and prayed with me; for the staff at Unitas; Ray (for all and more); Belinda (Jaryd's mommy); to each person who prayed non stop for Jed and sent messages... and to my little funny balloon mommy for taking care of me while I fell apart.

Jed is a miracle and we have to believe that there is a reason why God and his angels are looking out for him. One day when Jed is a grow up man we can moan at him for all the stress he has laid in our hearts...

I know that I would not be here if it was not for your prayers, love and support - no words left - just keep praying for us please. Watching your son going down fast can physically kill you... I think i almost died of a broken heart!

Special requests for prayers: Reef - bone marrow transplant today, Jaryd (Ewings Sarcoma with an infection marker and low blood counts), Jono (ALL), Darrian (in remission), Rene (blood disorder), Samuel (the little boy from ICU), Connor (AML), Lefa, Erich (Pilomyxoid), Tabs (brain cancer), and all the others..... thank you for supporting, and praying for these precious warriors!

In God we Trust.

Love Bon, Ray, Jed10 and Vusi (the puppy)
Attached is a photo of sleepy mommy, Jed and the "paws for people dog" that visited Jed.

Jed;s Progress

2nd September 2009

Hi there,

Jed had a better day, he is breathing on his own but the lungs remain a concern. Physio seems very intense and painful - he tends to scream through the whole process. Especially on the side where the op took place. I feel like the bad guy lately coz I hold him still while they bang away at his lungs, prick him and drug him off to surgery.

I saw the cut for the first time and was shocked at how big it was (maybe Jed is just small and therefore it looks huge) - I asked why it was so big and the surgeon explained that as the appendix had burst the operation is different to the normal appendix operation. The drains were removed and that was awful; Jeddy screamed and he looked terrified. My poor little boy. He was screaming at me "mama why are you letting them kill me PLEASE HELP ME".... All I could do was hold his tiny legs and fight back tears.

Jed has had awful nightmares since we arrived and he wakes up screaming "no no no please no picking - help me please"... so I got a child psychologist to come in today. After a brief evaluation she explained that while Jed understands his sickness (like a 4 year old child can) and he doesn't blame me - he is suffering from intense pain shock. The pain he felt was so bad. I feel terrible for not insisting on an x-ray or CT for his tummy sooner. I wonder why no one explained just how much danger he was in, although I could see it (and feel it). When I asked why his lung collapsed, my answer was he was is respiratory failure... this is just all beyond me ....

As for the appendix I think now maybe it might be related to the cancer - I read something about stool blockage causing an abscess (Jed's was 7.5 mm) and his chemo does cause hectic tummy issues.

All I can do now is look forward, try not to focus on this last week and keep taking it moment by moment. He is smiling today and tried to walk but he is just too weak and thin at the moment. His infection marker is down to 29. Tomorrow the doctor will decide to put an NG tube in to feed him as he has no interest in eating. At this stage I'm willing to try anything but I really tried so hard to avoid it.

I let Jed paint my face today and wore the makeup with pride. I also took some of the money I (we) raised from the T-shirt sales and bought some goodies (for the coffee shop here....mmmmm) for the kiddies that have been with us this week. Rene got a pink bunny (blood disorder), Samuel got a huge big blue bear (9 months got a Trachea) and I made party packs for each child in the hospital. I got the ones who could move around to come to Jed's room and collect the goodies. It was very nice for him and I. I didn't take photos as I just don't feel at this stage it was appropriate - I just think imagine someone asked me for Jed's picture... so it was unconditional little smile toys.

For those of you who have ordered shirts - they are ready - I just need to collect them.

Please pray for our Jed, Reef (bone marrow transplant), Jordi (MRI coming up), Jaryd (Ewings Sarcoma), Rene (blood disorder), Connor (new AML patient), Erich (MRI showed small tumor growth), Siyabonga (not sure as he has been in strick isolation this week like Jeddy), Lefa (neuroblastoma), Ituteng (ALL), Tabs (brain cancer) and all other children walking this horrible road.

Thank you to Ray's colleagues at work that wear a gold ribbon for Children Cancer Awareness Month. Ray looked great with his ribbon on and mine is even on my Pjs. Imagine walking into your work place and eveyone you know is behind you showing support for your son by wearing a symbol of support - Gold ribbon for precious children. I thought it was so special and when we told the other mom's we all had a good cry.... (which seems to be what we do a lot together)

Jesus please continue to hold Jed in your arms, and Lord I thank you for his progress under your protection!

Attached is Jed and Edith is favorite nurse!

Love
Bon x x x

Faith in the face of adversity

31st August 2009

Hi there,

Ray bought my computer quick so I could send out an e-mail. Even my fingers hurt as I type.

Briefly

Thurs 26 - Jed complains of pain in his tummy and head at 2h20 am. 4am we leave for Unitas. at 6am Jed's fever starts to climb, he has a seizure with a temp 39.5 - his body goes into septic shock. He hallucinates seeing fairies, popcorn, ants and a golden bridge... the "blue team" are called to Jed's room. Sister Hannie and Sister Elize work with extreme speed with the "blue team".... I watch as Jed's starts to slip away from me.... Doctor believes (as we all do, it is brain related), bleeding on the brain, fluid blockage - due to temp.... meningitis.... the panic doesn't stop - (I just vomit and vomit... I'm helpless.... useless....) More blood tests, x-rays, CT scan of brain.... nothing is confirmed.

Friday - no change, Jed's condition gets worse. He is screaming and non stop in pain. Doc decides to look for infection cause again (ruling out the brain and port needle), sonor done - appendix has a cystic formation, X-ray - confirms there is a problem - CT scan confirms the appendix has burst and Jed is getting weaker. The appendix burst "about" 7am yesterday. At 16h00 Dr does surgery... It is explained that as Jed has no immune system, low blood counts and his lung has collapsed from septic shock the risk is huge. 17h06 Jed is out of surgery and dr sneaks me into recovery, Jed is alive..... ICU for the night. (I confirm, it is possible to sleep standing up alert and with your eyes open)!

Saturday - I nag to move to oncology ward as ICU staff have NOTHING on our onco ladies....I'm missing my nursing team who know me (my stress levels) and my demands (each teaspoon of medication is explained to me). In onco we hug and tuck each other in at night. Jed's infection marker climbs after surgery.

Sunday - Lungs are weak, weak, Jed is breathing with the help of oxygen... He is suffering and the pain is breaking me. Infection marker 199 - Jed is limp, weak and sick. Sicker than I have ever seen him (including after both brain surgeries).

I picture, those huge big balls that knock the old building down.... keeps banging and banging at me (i'm the old building) - I can't run, I can stop it, I can't move - just gotta take each blow until it stops... I wonder if my core foundation is breaking through this!

Monday - after praying and begging everyone to pray his infection marker is at 78 - this drop is beyond the doctor (thanks God).... Jed starts to show signs of breathing patterns improving (no oxygen at times). The drains (in tummy) are still full of fluid and today marks day 4 of Jed eating and drinking nothing - yip he is getting fluid through the drip but as we all know Jed does not have any fat to lose!!!! The "banging lady" (Physio) shows no mercy - bang bang bang!

Chemo is out of the question - week 5 no chemo (cancer.....)

And that is were we are at this moment! Somehow brain cancer was just not enough for Jed's body... Burst Appendix which is TOTALLY unrelated to cancer is what is currently hurting my little hero. It just goes to show we are NEVER sure of what lays around the corner... I never ever believed Jed's appendix was in trouble. The doctor has confirmed that Jeddy was in excruciating pain and still is sore (however managed better now)

Please also include Reef (prep for Bone Marrow Transplant underway - cancer marker is at about 3%) and Jordi (MRI coming up on 21 September) in your prayers. Now add Johnathan (our new 16 year old), baby Myburgh (our new 1 month old), Siya, Lefa, Darrian, Erich (MRI scan on Wed), Tabs, Jaryd (Ewings Sarcoma - prayer for Belinda his wonderful mommy who is not dealing with the news well), Luther's mom and dad, Connor (ANOTHER new child) and all the children with cancer.

PLEASE also remember that September is Childhood Cancer Awareness Month - Gold Ribbon - please wear a piece of gold ribbon for my baby his friends.

Please please pray that God fixes Jed and thank you for the love and messages!

Love from
Broken Bon x

In the olden days

23rd August 2009

Hi,

I sit here and wonder if in 10 (or 20) years time a mother of a child with cancer will say... "did you know that about 10 years ago mother's gave consent for their children to have chemo" and mother2 would say with horror in her voice "I actually heard about a mother of a 4 year old boy who actually gave the chemo tablets to her son!!!" and the mother1 would reply "could you just imagine how stupid and desperate that mother must have been to give her own child poison!!".... God I pray for a cure... I just don't understand why poison is the only treatment protocol. We send men to the moon, fly across oceans and yet we can't cure cancer! I was reading in my Brain Tumor Mom's Support Group that you are advised to wear gloves and a mask when giving your child oral chemo (this was our first treatment back in Feb) to protect yourself from the toxic chemo. You should also wear gloves and a mask to clean up "chemo" vomit. Well oops...... chemo vomit has been my perfume for months now!

We didn't do chemo this week as Jed's platelet count was only 29. The chemo has suppressed his bone marrow so we will have to wait to see what the counts are next week. I pray they are good as I know that the treatment is essential. His blood counts have not recovered in 3 weeks and this is a huge concern for me.

x x x
Heaven got another angel this past week. Nicole - please pray for this child's parents!
x x x

An update on my little Childhood Cancer Awareness Drive... I have raised a little money so far for the kiddies. I am hoping to give each child a teddy (as seen in the picture). The teddy shirt will read "I wear gold for my hero" Gold being the childhood cancer ribbon. If anyone is interesting in supporting this drive please buy a shirt, cap, badge or teddy. ALL THE PROFITS will go to gifts for the children at Unitas hospital. I'm hoping to raise enough to get each child a teddy and activity toy. If you don't want to purchase anything you can donate a toy. I don't have a separate bank account for this and it is not an official fund raising thing, it is just a small token for these kids. Some of the moms have asked for a shirt so if there is any money left, I will give them a shirt. Many of these moms (like me) no longer work so it would be a nice gesture from us. I think I'm doing this mainly to keep myself focused on something positive - when living in a nightmare you need to keep your eyes on the sunshine. I read in a book (my sister's keeper), "I'm building Sun Castles while waiting for the Tsunami"


This weeks prayer requests:

Reef awaiting Bone Marrow Transplant - Cancer Marker must be below 2% by Wednesday (some of us will be fasting on Tuesday and praying)
Jordan MRI due on the 21st of September 2009 - we also pray that he recovers the use of his legs
Erich - MRI due on Thursday (same tumor as Jed)
Luther and Nicole parents..... angels R.I.P

An our Jeddy - for platelet counts and for NO tumour GROWTH - hec pray for NO TUMOUR AT ALL!!!

And all children and parents affected by cancer.

With love and hugs
Bon, Ray, Jed and Vusi (the puppy)

In God we Trust

At about midnight last night Jed got a sudden fever of 38.5 - is it not amazing how a mommy just knows. I woke up suddenly, put the light on and took his temp. Ray and I rushed him to Unitas... just before we left he did a huge pooh and it was ikki, blood coming out of his little bum and lots of screams of pain. Constipation is due to chemo and generally a poor diet. By the time we reached Unitas the fever had broken (I had already given 8mls of Panado). The blood results showed no infection. His reactive protein marker was less than 2 (anything above 5 indicates an infection). Other blood results; Haemoglobin (Red cells) at 10.2 (normal is 11 - 15), white cells at 5.97 (this is an escalated figure from the daily neupogen injections I gave Jed), and platelets are very low at 38 (this means lots of bruising). I am confident that his blood results will improve this week as we did not do chemo this Saturday. Next chemo is 100% Carbo (no longer the reduced dose) and Vincristine. Dr Reynders was amazing last night he spoke the nurses through what to do. So basically we rushed Jed to hospital due to a huge chemo pooh. Honestly to watch a 4 year old give birth to a pooh is very sad to witness but all part of the journey to recovery. We got home at 7am this morning with a happy little boy!

I have had a bit of an emotionally hectic time since the MRI. The build up and then waiting for the results is just too much for any parent to have to go through. I've been feeling very down and just to be honest I was so hoping for shrinkage. We are still dealing with 3cm..... I decided to make an appointment to see Dr Weinburg at Linksfield and have him go through the MRI report and scans with me. I wanted to compare the last scan with this scan from a neurosurgeon's point of view. Dr Weinburg did both Jed's brain operations. He was very positive about the MRI results and explained that at the last MRI the tumour was in 3 nodules and this as I understand it, is 3 growth points - the main one being at 3 cms. He could not clearly confirm that the nodules were still present (due to contrast issues) but he said the fact the tumour is not growing is "beyond medical science" - aka "a miracle".... let us prayer that this is beginning of my son's miracle and that soon we will see NOTHING on our MRIs. We spent a little while discussing the removal of the tumour (another operation) and he confirmed that surgery was not an option for Jed at this stage. He also mentioned that Jed's brain fluid was doing its job (no shunt needed) We discussed Jed's shaking in the hands and twitching legs and he explained it was damage from the surgery. I am blessed that this has been the only side effect and Jed is managing fine.

On the 30th of September I have an appointment to see a doctor Dr Sneakers - A neurosurgeon from Milpark. I would like to discuss his point of view on the tumour and will present him with the next MRI results (MRI number 7). I have heard that Dr Sneakers is one of the best. Seeing a neurosurgeon costs about R500 but I can honestly say it is money worth spending, I just feel like I understand the results better.

September is Childhood Cancer Awareness day and I have decided to try raise a little money to buy some "things" for the kids at Unitas. When the children go for chemo they generally spend 3 days in hospital a month (this is not counting the weeks they have infections) or if they are like Jed they spend every single Saturday at hospital. I'd like to raise some money to buy a few things like beading, fabric painting, lego, scrap booking, stamp pads and some little awards to hand out for the brave kids. These kids generally don't go to school so the joy of receiving an award is often unknown to them. I think a little medal or a sticker would go some way to helping encourage them. The nurses could give them out after major treatments, operations or bone marrow transplants. If anyone is interested in buying any items please let me know. I am also going to be selling T-shirts, caps and badges. The t-shirt will read "I wear GOLD for my hero" with a Gold childhood awareness ribbon on it. Everyone knows the red ribbon is for AIDS, the pink for Breast Cancer but how many people know that GOLD is for our little hero's that fight during their childhoods. I will also make a few T-shirts for the kids (if I have raised enough) that say, "BALD in the new cool" with a little Bald stick man. I have already paid for the artwork to be done and I am hoping to have samples by Monday. Please let me know if you would like to buy a shirt, cap, badge or donate a gift. Any gift ideas are welcome. As soon as I can the samples I'll send out an e-mail. T

And in other news, I got Jed a puppy, he named him Vusi, so there is a new addition to our little 10 family. Totally an impulse decision. As Jed is not allowed friends this little puppy is his new best friend. At the hospital last night Jed was screaming at the nurse to hurry up coz his puppy was waiting for his dad. I am now a granny!

And lastly, Jordi's chemo and treatment protocol has been completed which means his parents have booked his MRI - the date is 21st September 2009. I am going to request that we fast before his MRI for a day, to pray for Jordi's MRI results and for strength for his mom and dad (Michelle and Wayne). This will be their first MRI since Jordi's surgery, chemo and radiation. In fact we can all just fast for a cure for cancer too. No family should ever endure cancer!

"In God we Trust"

Love
Bonni, Ray, Jed10 and Vusi10 (the doggie)

No greater love

3rd August 2009

Hi,

As i'm typing i'm fighting the urge to let the lump in my throat burst - I'll be wailing like a African mama at a funeral... I tell you the urge to explode is there.... I fight the physical pain in my chest with every key stroke... and the reason.. MRI... breath MRI.... breath... MRI MRI MRI MRI.... an MRI is our cancer marker... how is the tumour doing? We booked the MRI for the 5th of August 2009 on Wednesday... Please pray for wonderful results...please, please, please..... splash splash (my silly tears)

Jed had his big chemo although his blood counts are still super low the doctor advised that we could not delay for another week. Jed had 80% of his Carbo and the full Vincristine. He vomited lots during the night on Saturday but has been very chirpy today considering. Jed continues to amaze me with his determination and strength. On Wednesday I will start to inject him with neupogen (this will assist the bone marrow to start working).

Today I spend the morning at the craft shop and had coffee with Janet. I've missed this over the last two weeks... I felt I needed to get the break but I did spend 99% of the time with a massive headache from the stress of being away from my boy... Lucky for me, Janet knows me so ignored my pounding headache and chatted away about the "little things". As we walked out of the coffee shop i saw a mom with her son walking casually past us... I then asked Janet if that women knew how lucky she was that her son was healthy.... Janet said "No buddy, not unless she knows you or someone like you". Please don't ever take anyone for granted.

....lots of people have said that they don't know what to say to me... I'm at that point as I type the next part of my mail... To Becks (Anthony Beckley), Shirley Beckley (his gorgeous wife), Brian Hull, Chuck and Yunita Mowray thank you so very much for paying for Jed's MRI on Wednesday. Knowing the status of the tumour means knowing if our treatment plan is working.... you may be saving my babies life... how could I ever say thank you... thank you just doesn't seem enough....so no "right" words but know how much we appreciate this wonderful wonderful gift! May God Bless you for this! Anthony please don't be grumpy for the public mail... I just love you guys and I can't do anything else but tell you this way so let me just have this little moment to tell the special people just how wonderful my friends are....

Attached is my PERFECT boy, perfect in every single way.... no greater love!

Love
Bonni, Ray and Jed10 000!

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

Chemo been reduced, Jed doing well - medal still around his neck

8th May 2009

Hi there,

I know if I don't write this on Monday my Jed10 supporters start to worry.

I have WONDERFUL news..... Jed handled the chemo VERY well. The doctor was concerned that the Carboplatin was actually just too toxic for Jed's little body so he reduced the dose. This will give Jed's body time to recover from his infection. As time goes the doctor will increase the dose but hopefully by then Jed's body will be able to handle the full dose of Carboplatin and Vincristine. His treatment plan is week 1 (Carboplatin and Vincristine - aka BIG CHEMO) then 2 weeks of Vincristine only, then week 4 (Carboplatin and Vincristine - BIG CHEMO) then again 2 weeks of Vincristine only,..... the cycle continues for 81 weeks with a break on weeks 13, 17 and 21. Cycles start in week 25, 31, 37, 43, 49, 55, 61, 73 and 79. So we have done 4 weeks of chemo. The side effects of Jed's chemo are; Carboplatin - Bone Marrow Suppression (this is why he always needs blood or platelets), Nausea and vomiting (and boy does he suffer with this one!!!); Vincristine-causes constipation (hence the infection), hair loss (already started), pain in the jaw (not complained of this), tingling fingers and weak ankles (this is also why he sometimes doesn't walk well).

and the best news is.... that Jed gained 200 grams last week and is now 17.8 kgs. I give... me me me all the credit for this, I have made more picnics, clown faced bread and yum yum milkshakes then ever before. I am still acting as the dustbin and therefore keeping my weight at a very healthy state! Jed has done brilliant considering he never ate for 6 whole days when the infection was present. The NG tube will go in if he gets to 17.6 kgs again, it is therefore imperative to keep his weight up. He can't tolerate the chemo without his body having some nutrition. I meet the dietitian on Saturday again to discuss more food ideas - our goal is 20 kgs at 107cm tall. She has been a wonderful support.

Today, Jed is doing very well, he is up and playing which fills my heart with happiness and takes the edge off the last couple of weeks. They had to give him bone marrow meds which hurt all of his joints so for a couple of days he could hardly walk... that was heart breaking to see.

Andre Beaud has made his appointment to make his platelet donation for Jed. He goes in on Thursday morning. I have had my results - my count is 347 000 so I will be donating on the 18th of June and then Ray on the 25th of June, his results are 253 000. My friend's husband (Trevor) will be donating on the 2nd of July - so at this stage we are only a couple short of meeting the quota. It is a long process and takes a huge commitment. I will be forwarding out a mail on the process soon and I can only plead with you that you read it and maybe make a decision to do it for Jed or for another child. If only I knew sooner; what an honor to have your platelets save a life of a cancer child or adult. I would give my life to save a cancer child (any ONE of them) and all they are asking is for some of our platelets...... please! I apologise for not doing the mail sooner but I have done some research and I don't wanna send out incorrect information and cause frustrations. I am currently typing out the list of no no medication that you need to avoid before your donation week.

I thank you for your prayers for Jed and for the beautiful messages and words of encouragement I have received.

With lots of love
Bon, Ray and Jed x x x
"In God we Trust"