Monday, October 19, 2009

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.

Ray, Bon and Vusi
dx August 2008 JPA (cerebellar hemisphere - left)
Brain Operation (8 hours)
January 2009
Brain Operation (9 hours)
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"

Monday, October 12, 2009

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

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

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

Wednesday, October 7, 2009

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