February 2007 Archives

I know its been a while since I last blogged. Christina had off last week from school, so outside of going to Philly on Tuesday we tried spending family time together.

So, here's the scoop. Jack's count last week were pretty good. He still needed platelets but's that's ok. He's not totally depleting them but they figure why not give them to him so we can make it through the week without having to go back a second time. Believe me, we were all over it......Anyway, he was supposed to start a new medication to help his GI issues from the GVHD as well as possibly help his inflamatory bowel issues, but Dr. Bunin decided against it. She feels it is another medication that can surpress his immune system and put him at greater risk of infection. She wants to try and decrease his steriods and see how his gut responds and hopefully things will be ok, otherwise if he doesn't get better then she will start the new medication.

On another note, Jack is not walking. It's been almost 2 weeks and he cries in pain when we try and get him to stand up not to mention try to walk. This is very difficult for us, he's really not doing much of anything other then trying to eat and drinking something fierce. I took him to his Physical Therapist (Ana) who help us through our rough times with his lymphedema and she was so happy to see him. He remembered her and let her do some massage and leg exercises to help with his back. She really thinks we should get an MRI, which we will get arranged when we go to clinic tomorrow. We don't know what is affecting his pain, it may be the result of the length of time he has been on the steriods, it could from the weight gain and the very distended belly he has or who knows, I guess only an MRI can tell us.

I don't know if you noticed we have added 2 more boys names to the list on our homepage, Giovanni and Samuel. These boys are of the latest to be diagnosed with NEMO. Please remember them in your prayers as well.

As always, thank you so much for keeping us in your prayers. We are praying now even harder that he can walk without pain.

(This article below is about Rhys, our NEMO family in Wales, please pray for them. Thank You)

The boy who faces nine months in an air bubble

Five-year-old Rhys will be forced to live in a sealed room for up to nine months
It is the modern equivalent of living in a sealed plastic bubble.

And it is also the best chance of survival for a desperately ill five-year-old.

Rhys Harris is to spend up to nine months living in an air-tight chamber measuring just 40ft by 40ft.

He will be cut off from the outside world to allow his immune system to recover after being rebuilt following a bone marrow transplant.

The sterile ward, which is located behind three sets of doors, will have a special canopy over his bed to filter the air that he breathes to make sure he doesn't catch an infection.

His parents, Dawn, 36, and Kevin, 42, will only be able to see him when they have scrubbed up and put on surgical masks and robes.

Even then they won't be able to kiss him goodnight in case they pass on a bug that could prove fatal. Without the pioneering treatment, Rhys could have only 18 months to live.

He is one of only 35 people in the world to suffer from NEMO, a disease that destroys the body's immune system. His best hope of survival is intensive chemotherapy followed by a bone marrow transplant.

Only two people have ever undergone a similar sealed room procedure and it will be the first time it has been attempted in Britain.

The process will be even harder as Rhys was left profoundly deaf after suffering a bout of meningitis at nine months old and was diagnosed with TB last year.

Rhys' father said: 'We know it is a slim chance but we have to take it. The flipside of the coin is not worth thinking about. We need to be positive.

'Rhys is going to have to live for several months in a clear unit behind door upon door upon door.

'There'll be a little red line round his bed over which no one can pass - we won't be able to hold him or hug him or anything - all contact will be very limited because he'll have no immune system whatsoever during the first three weeks of chemo.'

After four weeks he will move into a 40ft by 40ft yellow square so he can walk around and will remain there for at least eight months.

His brother Morgan, four, will be unable to see Rhys face-to-face, but will stay in touch with him via a webcam.

His family are moving from their home in Newbridge, South Wales, to Newcastle ready for the treatment at the city's general hospital.

The medical team is still searching for a bone marrow donor, ideally from someone who has had TB. Six good matches have already been identified and doctors hope to start treatment in April.

Rhys' parents have since set up a website - www.cure4rhys.org - to post updates on the boy's battle.

If you missed us on the Discovery Health Channel's "Mystery Diagnosis", you can now view it on our home page.

Christina is off from school this week so we will post an update soon....................

author: unknown

Life is fleeting, years rush past...
and little boys grow up so fast!
Let me take time out to be
thankful mine is still here with me.
And though I'm busy through the day,
let me take time out to play...
Let me take time out to smile,
to sit with him for just a while...
Let me take time out for walks,
for swings and sports and quiet talks,
for sharing giggles, tickles, and hugs,
for patching knees and catching bugs...
for running races, climbing trees,
for helping with his A - B - C's...
For hatching plots and planning schemes,
for listening to his thoughts and dreams.
Let me tuck him in at night,
hear his prayers, turn off the light.
And when my busy day is done,
let me thank God I have a son

Someday Jack, you will be doing all the things that boys do, I love you, Son....

Thank You Cindy for passing this along so I can post it on this site.

It's been a while since my last blog and not too many things have changed. We're settling in at home finally and traveling down to Philly twice a week. Since the last blog we got the confirmation from Seatle for the GVHD in the gut so no changes were made with Jack's meds to treat it. We started out with 18 hours of TPN at home and are now down to 12 hours and what a blessing that is. Jack has more freedom during the day but he's still doesn't have much strength and is very protective of his central line. We have to scoop him up from under his legs to carry him and can't lift him up from under his arms, needless to say, he's quite a load.......Thank God. He's gaining weight, some of it is fluid, but some is true flesh. He is very demanding and I dont' get much done other then making him food. Jack starts his day at the kitchen table and continues to sit there for hours on end. I'm glad he's eating by mouth, but he doesn't eat a whole lot. Something is better then nothing.

The last 3 times we went to clinic he's needed platelets and today (Thursday 2/8) we made a stride and he didn't need them. So hopefully this is a good sign that he is starting to make his own and that his graft may be getting better with the IV nutrition and treatment for the GVHD. The stooling hasn't changed much and we have good and bad days. I'm tired from broken sleep at night but I know it will get better.

Jack was happy to see his friend Matthew Brand and his mom Cathyie today and we're glad he is doing much, much better. Matthew has even started school again which is a good sign for Jack being able to start school again soon. Matthew had suffered very badly from GVHD after his transplant and has done very well with the treatment which is great hope for Jack.

Thank you again for always keeping us in your thoughts and prayers.
God Bless