The monster is sleeping

1st February 2010

Hi there,

Jed's big chemo went okay on Monday - Neutrophils are very low at zero so I am injecting him daily with Neupogen; which is torture. Imagine injecting your baby - it totally sucks. Anyhow 4 down and only 1 to go. His counts are so low that I have had to make the decision that no visitors are allowed, so I'm feeling rather down. I am missing Jed's laughter as he plays with Thami or Jordan. Jed is also having pains in his joints from the Neupogen and Vincristine (chemo) but the swimming seems to ease this. He vomited coco pops all over Ray this morning which was pleasant to witness but after zofran Jed was feeling much better and so was Ray (after a wash)!!!

We saw the Neurosurgeon today who confirmed that the latest MRI scans look fantastic. There is no visible tumour however there is an increase in contrast. Is it cancer, is it surgery scaring, or is it radiation??? At this point we don't know - we are just blessed that there is no visible new growth and that for now we can breath a little easier. We have 40 weeks of intense chemo left and 6 weeks after that we can do a PET scan and confirm if the cancer is still there. At this stage the monster is sleeping...... I already have "scanxiety" for the next MRI which will be end of March 2010. I have joined a Pilomyxoid support group and realise how truly blessed we are with this news as so many are not as lucky :-(.... I am still going to send the MRI to the states for their input - turning every stone - twice, three times, whatever is needed.

some other updates:

Jarry is doing well after his 12 hour leg save op and a direct quote from Belinda his mom which I received on Monday
"HOT OFF THE PRESS!!!!! Doctor has just phoned me......the histology results are 100% clear.....Did you hear me 100% CLEAR.....NO LIVING CANCER CELLS COULD BE FOUND....NOT EVEN ON THE BONE THEY REMOVED, NOT IN THE SURROUNDING TISSUE, NOWHERE....GOD, YOU ARE SOOOOO VERY FAITHFUL AND AMAZING AND I'M SO STOKED I CANT STOP CRYING!!!!!!!!!!!!!!!! "

Jarry will continue with chemo and they have a long road of physio ahead but what a wonderful bit of news, thank you to everyone who made rainbows and sent gifts for him. I appreciate it so dearly and I know Belinda was delighted with his room and the gifts!!!

Jordan Tromp's MRI remains clear - he is in full remission - NO EVIDENCE OF CANCER in his spine - what an amazing miracle that is!!!! Jordan will have surgery on his foot on the 8th of February in an attempt to get him walking. Jordan is still paralysed from the knees down but Michelle has found a surgeon who is believes he can get this little boy walking with "walk aids". Now that will be the ultimate for Michelle and I can just picture him walking and I can't wait for that day. Please send lots of prayers for Jordan and Michelle. This is a little boy that has overcome cancer and now begins the journey to regain his strength so he can walk again!!

And finally, please may I ask for prayers for Irma and Jan - Rene's mom and dad. After losing their precious daughter in December they are now faced with financial ruin. They have been evicted from their home and lost just about everything material. These parents are grieving is that not enough!!!!! I have transferred R500 from Jed's fund to them and I pray that this can at least provide some help for them. I am determined to get my ass into gear to raise funds and awareness for children like
Jed, Jordan, Jarry and for families, that like Rene's, loose EVERYTHING because of this HORRID disease!!! It just doesn't seem fair.

Attached is a photo of Jed10 with a MASSIVE DHL Truck - we are keeping up our operations skills by route planning and Jed is very proud of his mommy's work truck - thank you Steve!

Love and hugs
Bon, Ray and Vusi
PS: Vusi is having surgery on the 9th of Feb - de-ballies - nothing serious but ja, while i'm nagging for prayers - just add our puppy please!

Chemo update

4th January 2010

Hello friends, Chemo went well. Jed's counts look good'ish (is that a word)....10.2 for HB (nice, low but nice), White cells 3 (low but okay'ish) and platelets at 56 - eeeeeeeeeeeeeeeeekkkkkkk - I started giving Jed a supplement called "Shark Liver Oil" and his platelets have been great - last week I was advised to give it to him every 2nd to 3rd day as the Vit A content is a little high in the South African product so .... his platelets are dropping.... I'm going back to one a day from tomorrow and I will see if they climb again and will monitor his Liver Functions.... I have also added Garlic and parsley to his supplements.... In my last mail I mentioned that Lefa was in remission...... I was wrong, he died.... he relapsed and he is gone.... I'm so broken and hurt! I remember Lefa and Jed running around the ward and together undoing their drips - as they both had ports - blood came shooting out and messed all over Jed; he looked like he had been stabbed. At the time it was not at all funny.... looking back I can picture these two little monsters playing with the drip lines.... Lefa had a gorgeous smile and the most beautiful dimples. Once when he was in ICU I went up with toys and goodies for him and he opened his eyes and said "hello mama Sipho, I love you" (Sipho - Jed's nickname)...... I remember thinking what a gorgeous kid he was and how with that one sentence he melted my heart! I asked the doctor today why so many of our children were dying, (today the hospital was empty.... only Jed ......) and he said "Bon, out of 10 children with cancer, 8 die".... this is my life, this is my reality and this is my worst nightmare.... I can't even express in words how helpless I feel.... the reality of cancer doesn't hit you as a parent until you see the devastation with your own eyes. WHY OH WHY is more not being done for our babies...??? - I'll tell you why, because after a child dies a parent stops breathing for a while, they break, and when they pick themselves up they can't face anything to do with cancer, so they close the book and move forward.... - with breast cancer - people survive and commit to awareness campaigns and charities and fun-walks and posters.... you know I read fair lady mag over breast cancer awareness month and there were 3 full page adverts. During childhood cancer awareness month - NOT ONE magazine had a gold ribbon advert, no lady at clicks handing out FREE gold ribbons... zip, nothing, zero......... if you think having breast cancer is hectic (and trust me I know it is) - try hugging a mother who has watched her child fight and then die from cancer.... My dream is to see pink, gold, red all equally represented! ..........(And as she pulls herself together) Please remember Jarry's big operation is happening on the 14th of January 2009, may I please ask that you pray for him. I will be fasting and praying on the 13th and I will be visiting the hospital on the 14th to be with his mommy! Reef is doing better and is home (finally) with his mom and dad! If you would like an update on Reef please mail me as his gran sends an update from time to time. I am also planning a fund raiser breakfast for some time towards the end of January - just waiting on my mind set to correct itself and then I will communicate the details. The money raised will go to Jed and Jordi's fund account. Jed for supplements and Jordi is in need of a super cool wheelchair. The gold pins from CANSA arrived. I was allocated 85 pins to sell. The pins are R30 each and are for childhood cancer awareness. This has nothing to do with Jed or Jordan's fund - it is for the TLC CANSA association. Please re-send any orders to me directly and you can transfer the money to Jed's account directly. I paid for the 85 out of my personal account (for admin issues) and transferred to CANSA. I was told that it was easier for the allocation of the money. Please continue to pray for us and keep us in your hearts! Attached photo was taken on New Year's day! With love and hugs

First post for 2010 - in God we trust

3rd January 2010

Hi my friends, As I sit here reflecting on advances and set backs over the past couple of years, I wonder what the next one has in store for us. For my oncology friends who are sleeping on hospital chairs in their children's cancer wards and watching their children whilst facing their deepest fears, may you be able to sleep peacefully for a moment today.... May the beeping machines and chimes not wake you unnecessarily my precious friends. For Irma, Jan, Voilet, Melissa, Sandra, Wendy, Lauren, Dawn and all those coping with the recent or not so recent loss of a child, may you find a measure of peace knowing that your baby is no longer in physical pain and that they live on in your hearts and the hearts of those who were blessed to have known them in this lifetime. For those who rest living between MRI scans awaiting MRI verdicts & the resulting sentences, may you be able to find a little time to treasure the good moments and not let life pass you by as you worry. For those in remission, (Jordi, Lefa, Reef and Darrien), let them savour all the life they can and let them live life to the fullest! To my Jeddy, my miracle son, You are my prince, my gentle warrior and my very best friend. I am blessed beyond words to be your mommy, gifted with the joy of your presence in my life. Five years have flown by and I can only pray that Jesus blesses us with so many more years together. Jed you are gorgeous, I cherish our moments together, whether watching cartoons or figuring out a new action figure.... Being with you is knowing intrinsically the speed of time, and my helplessness to slow in down even for a minute. I need only watch you sleep to feel a sting in my eye - I love you Jeddy and I thank God that he has brought you thus far! Please pray for Ithuteng's mommy Violet, he got his angel wings on New Years eve..... no bone marrow match was found and we lost a very special child who we all loved dearly. The attached photo was taken of Jed and Ithuteng after Jed's appendix operation - the boys loved to swop Playstation games and run around the ward. I know Ithuteng has left a huge crack in my already broken heart.! Please pray for Jed's port to give blood, the port has somehow blocked and the doctor's can't use it for blood tests. As you know Jed goes weekly for chemo, blood tests and if required tranfusions so his port is essential ....On Monday he was "pricked" twice - his veins are not very good. Please pray for Jaryd who has major surgery on his leg on the 14th of January 2010 - this operation is to clear him of cancer (Ewings Sarcoma) and the surgeons are confident they can save his leg. Pray for strength for Belinda and Jason as they wait outside the theatre - it can be a very hard wait; time freezes...... Jaryd's counts are still very low so we need to pray that he starts eating and gains some much needed weight before his operation to give his body a boost! And lastly, thank you for praying for us, for believing with me and for being my strength. Thank you for supporting me with words of encouragement. Each e-mail and sms has been cherished and appreciated! There is no way I would still be sane without you and I ask that you please continue to walk with me on this journey; with Jesus leading the way!

Love and hugsBonni, Jed10 and Vusi

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