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.