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