Wednesday, September 30, 2009

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

Monday, September 21, 2009

Another hospital stay

21st September 2009


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....


Monday, September 14, 2009

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

Tuesday, September 8, 2009

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) 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.

Friday, September 4, 2009

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!

Bon x x x

Tuesday, September 1, 2009

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.


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