Grace-ALL

[Guest guest]

Dear Members

My name is Robin and I am good friends with Cindi May and Steve Feingold of ton, South Carolina. They have twins age 7-Sara and Tom and triplets age 3, Grace, Lillie and Sam. Grace was diagnosed with ALL on Thursday she began chemo on Friday. You probably know better than I how the family is doing. Both Cindi and Steve are doctors, Cindi Phd in cognitive psychology, College of ton professor, and Steve Md-ER doctor. Cindi and I became great friends through our background of education and research-our kids with Down syndrome led us into the new area of learning where we have blossomed personally and professionally(and the kids too). Grace is our future daughter in law we tell others--- will be one of my three sons who gets the doctors (plural and possessive) daughter--we try to stay away from the label "arranged marriage"-we have enough labels to fight off at this time.

Back to Grace

Here is a request from Steve and Cindi--

First

She is receiving CCG-1991 chemo protocol.

Are their any descriptive studies on this specific protocol on patience with or with our Down syndrome?

Outcome data on this protocol is good too.

Second

"During induction phase what can we expect?"sleep, eating, playing, learning, therapy? any information to help prepare us. We had a long conversation about keeping Grace in the same rooms as the triplets or moving her out? Family stuff--

Thank you for allowing me to join this list serve and help Steve, Cindi and Grace--

Yours in Grace

Robin

Hello everyone,

Let me first say a huge thanks for the emails, books, balloons, and general

support for Grace. It is overwhelmingly wonderful to feel your support. As we

have experienced since Grace's birth, there is no support like the support that

comes from other parents in the Down syndrome group. I would love to write to

each of you personally to thank you, but I hope you will understand that my time

is fairly limited and I want to spend as much of it as I can with Grace...so

please accept this humble email.

Now, let me update you on Grace's situation. Grace has been your typical kid

with Down syndrome up until this week, when we noticed that she had burst blood

vessels in a few places on her body. Long story short, a blood test (done really

as more of a precaution) indicated that she had low platelets (which we

suspected) and low hemoglobin (which was a big surprise). One hour later she was

booked for a bone marrow check, and 24 hours later she was diagnosed with

leukemia. We now know that she has a form of leukemia known as ALL. There are

two general forms: AML (which in general has better recovery rates in children

with Down syndrome) and ALL (which generally has a recovery rate of 60-70%).

There are subtypes of ALL, and we won't know for a few weeks which subtype Grace

has. Some of the subtypes have relatively high recovery rates, and obviously

others have relatively low. Keep your fingers crossed for good news...

With ALL, Grace will receive 2 yrs of treatment. If all goes well, the very

worst of it will occur in the first month, and apparently its a pretty nasty

month. She is in the " standard treatment " rather than " high risk treatment "

group, which essentially means that she will get less of the most horrible

medicine. It does not (unfortunately) mean she necessarily has a better

prognosis - just a little less of the nasty chemotherapy. In the best case

scenario, she will go into remission after the first month, but will still need

about 8 months of fairly intense treatment, followed by more than a year of

additional treatment (which is not so bad, according to initial reports). The

initial 8 months can get ugly, from what we understand, but if you make it

through those then life gets better. Of course I'm giving you the best case

scenario here, as we are choosing to focus on that. There are many things that

could go wrong and alter the course, but we'll hope for the best and we'll try

to keep you updated as much as possible.

Finally, on to the last question: what sort of help do we need? Well, we do need

help! And we are working as quickly as we can to delineate exactly what sort of

help we need most. We will likely need people to come and sit with Grace, and

perhaps even for a few brave soldiers to spend the night if at all possible. It

is simply impossible for Steve to keep working and for me to be with Grace and

care for the other 4 kids 24/7. It will be critical that anyone who comes to

visit or stay with Grace be EXTREMELY healthy, as the greatest risk is for

infection and it could be fatal. We will also at this point ask that only adults

visit - we LOVE kids but unfortunately the risk is just too great for now. If

you want to help AND if you are in a situation in which you could come alone (we

fully understand this will be impossible for many), please let us know. We will

figure out a system for letting people know when we need help ...just not quite

there yet. We do have lots of family help at this point, but this will be a long

journey and so we know we will likely rely on many, many of you who have

offered.

Last but not least, my other 4 kids have taken this fairly hard - especially

and Tom. They would love to get cards or notes from others, especially

with prayers. As a little funny aside, they go to Catholic school and their

first response was to say we should call all the nuns at school because they are

" really " connected with God!

Again, thanks to all for the prayers and thoughts and support. We so appreciate

it, and we'll continue to do so as we make this journey. We are already so

blessed and overwhelmed by kindnesses - they have made this nightmare a more

tolerable reality.

Thanks,

Cindi