2nd May 2009
Hi,
My heart is so broken I can actually feel the physical pain. Cancer is a bastard!
Jed was admitted to hospital on Wednesday with awful tummy ache, he was screaming and shouting, "mama help me"... Ray and I rushed him to Unitas and after the blood tests we were told his infection marker was 60 (it should be below 5), his white cell count was ZERO. He was dehydrated, constipated and his system was poisoned from chemo. His tiny body was shaking in pain, there are no words to explain how I felt. He was given morphine, cortizone, zofran, paracetamol and buscopan. After watching Jed suffer for 3 long days and 3 long nights Ray and I finally had the conversation about stopping the chemo and letting God decide what his plan for our baby was. We asked the doctor how much time we would have if we took that decision and he explained we'd have 6 months at the most. The problem is the quality of those 6 months... the impossible decision. I looked at Dr Reynders and between hysterical sobs I asked him if it was his baby what he would do. He replied that he would give the doctor 3 months and see how the chemo goes, if there is no improvement he would stop as he couldn't see his child suffer. We now give the doctor some more time but I just don't see how Ray and I are going to make it through.....
I haven't been able to pray for the duration of the week as I have so much anger inside that I just feel my prayers are not being heard. I know there is no cure, I know what I can see going on in my daily life but God said he would never give us more than we can handle. Surely he knows me.......... Just pray for Jed please!....
And ... the good news is. We are home for a couple of days. We skipped chemo for last Saturday as Jed was too weak and depending on his counts he will have his treatment this Saturday. He was also given a medal from the nurses for being the bravest little boy in the hospital (i'm sure they all get one). Jed has not taken his medal off and is bragging to his dad and gwans how he won a medal for being so brave!!!! I'm actually very proud of the medal myself. I have seen a wonderful dietitian about his eating, Jed has 20% malnutrition and she is working with me now to help me build him up. He was admitted at 17.6 kgs but after 5 days of NO FOOD, only a hydration drip I wonder where we are with the weight now.... I have a smart action plan and I have already started working on it. Today he ate chicken for the first time since he got sick so maybe things will improve.
More good news, Andre Beaud will be giving Jed's first round of platelets. On the 11th of June he will be off to Unitas to make the donation. If you see Andre please ensure he is eating well and do not stress him out at all, he needs to stay well and chirping for his big day! I will be sending out a mail on the donation process and those who are O positive and read the criteria you can decide if you would like to donate for Jed. Ray and I did the donation pre-test today and I am actually on a VERY MILD and low dose of anti-depressant according to the doctor so dependant on the pre-test results we too can give our baby platelets. I will send out this mail tomorrow. What is wonderful about this process is that if Jed doesn't need the platelets on Saturday then the next child in line gets them. So they NEVER go to waste. Platelets only last 5 days. If you are not O positive and feel you would still like to donate all I can say is, you will be doing the most wonderful thing for a cancer patient. When you see a mommy or daddy running in with their child bleeding from all over as the platelets counts have dropped - there are no words to describe the sense of urgency on their faces. We have had to wait up to 24 hours before to receive platelets as the shortage is that bad. I guess people don't donate as the criteria is very strict and the process does take time. I must be honest I didn't even know what a platelet was before .... ja ja....
With the biggest request to pray for Jed and with so much love and thanks for your support.
Love, hugs
Bon, Ray and Precious Jed 10
x x x x
My heart is so broken I can actually feel the physical pain. Cancer is a bastard!
Jed was admitted to hospital on Wednesday with awful tummy ache, he was screaming and shouting, "mama help me"... Ray and I rushed him to Unitas and after the blood tests we were told his infection marker was 60 (it should be below 5), his white cell count was ZERO. He was dehydrated, constipated and his system was poisoned from chemo. His tiny body was shaking in pain, there are no words to explain how I felt. He was given morphine, cortizone, zofran, paracetamol and buscopan. After watching Jed suffer for 3 long days and 3 long nights Ray and I finally had the conversation about stopping the chemo and letting God decide what his plan for our baby was. We asked the doctor how much time we would have if we took that decision and he explained we'd have 6 months at the most. The problem is the quality of those 6 months... the impossible decision. I looked at Dr Reynders and between hysterical sobs I asked him if it was his baby what he would do. He replied that he would give the doctor 3 months and see how the chemo goes, if there is no improvement he would stop as he couldn't see his child suffer. We now give the doctor some more time but I just don't see how Ray and I are going to make it through.....
I haven't been able to pray for the duration of the week as I have so much anger inside that I just feel my prayers are not being heard. I know there is no cure, I know what I can see going on in my daily life but God said he would never give us more than we can handle. Surely he knows me.......... Just pray for Jed please!....
And ... the good news is. We are home for a couple of days. We skipped chemo for last Saturday as Jed was too weak and depending on his counts he will have his treatment this Saturday. He was also given a medal from the nurses for being the bravest little boy in the hospital (i'm sure they all get one). Jed has not taken his medal off and is bragging to his dad and gwans how he won a medal for being so brave!!!! I'm actually very proud of the medal myself. I have seen a wonderful dietitian about his eating, Jed has 20% malnutrition and she is working with me now to help me build him up. He was admitted at 17.6 kgs but after 5 days of NO FOOD, only a hydration drip I wonder where we are with the weight now.... I have a smart action plan and I have already started working on it. Today he ate chicken for the first time since he got sick so maybe things will improve.
More good news, Andre Beaud will be giving Jed's first round of platelets. On the 11th of June he will be off to Unitas to make the donation. If you see Andre please ensure he is eating well and do not stress him out at all, he needs to stay well and chirping for his big day! I will be sending out a mail on the donation process and those who are O positive and read the criteria you can decide if you would like to donate for Jed. Ray and I did the donation pre-test today and I am actually on a VERY MILD and low dose of anti-depressant according to the doctor so dependant on the pre-test results we too can give our baby platelets. I will send out this mail tomorrow. What is wonderful about this process is that if Jed doesn't need the platelets on Saturday then the next child in line gets them. So they NEVER go to waste. Platelets only last 5 days. If you are not O positive and feel you would still like to donate all I can say is, you will be doing the most wonderful thing for a cancer patient. When you see a mommy or daddy running in with their child bleeding from all over as the platelets counts have dropped - there are no words to describe the sense of urgency on their faces. We have had to wait up to 24 hours before to receive platelets as the shortage is that bad. I guess people don't donate as the criteria is very strict and the process does take time. I must be honest I didn't even know what a platelet was before .... ja ja....
With the biggest request to pray for Jed and with so much love and thanks for your support.
Love, hugs
Bon, Ray and Precious Jed 10
x x x x
Bonnie, my heart breaks for you. If I was the right blood type and not pregnant, I would donate platelets. Kieran still remembers Jed from the day at Enchanted, and always wants to see the pictures you upload of Jed on here. Dr Klass also sends all his love, Kieran had a health scare a few weeks ago, and we ended up spending a bit of time with Dr Klass. We are praying for you guys every day.
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