History

Tuesday, December 14, 2004 1:28 PM CST

Hi everyone! Happy Holidays to all of you!

Well it has been one year since Erica's last transfusion. She had her last transfusion and bone marrow biopsy on December 11th, 2003.

You know, I'm still not sure what is better, the damned Prednisone or the transfusions. I guess it is different for every individual. I am happy to report that Erica is sitting at 2.5 mls of Prednisone EOD (every other day), and her HGB has been at 115 (ish) for over 6 weeks now.

For those of you that know what it's like to have a child with DBA, you know that you never know what to expect. You never know when the steriod is going to stop working... it is an ongoing - week to week - CBC to CBC - stress!

Erica is into the excitement of the season... she has no idea, at 18 months old, what Christmas is... but she loves the lights, the tree, the decorations and the music. She is a very happy little angel!

God bless you all... special blessings to a precious little boy that was at Duke U Hospital this fall and should be home for Christmas... and another special blessing for a special little girl in NJ who is going to enjoy Disney shortly and then embark on her own adventure ... I will be praying for you honey!

Happy Holidays!

Paula

Wednesday, November 10, 2004 7:20 PM CST

Erica has had great blood results in the last two weeks. I keep telling my husband that the results look almost strangely normal.

When Erica was on 4 MLS of Prednisone EOD (every other day), her HGB (hemoglobin) was at 101 (normal being 105 - 135). Now we have slowly dropped her dosage down to 3 MLS EOD and her HGB is actually up to 115 (and 112 last week). Not sure why... but hey, who is complaining! I try not to second guess good news!

Now if we could just figure out how to get the blood out without poking her! Nothing less than magic I'm sure!

Today we made the decision to move to blood tests every two weeks instead of every week (which is great for everyone!).

Erica turned 17 months on November 5th, 2004. She isn't saying a word yet (but who could get a word in with big sister around!?) tee hee

Just wanted everyone to know that she is looking great, feeling great and the test results, as of late, have been good.

Thanks to everyone for all your support.

Paula

Wednesday, November 10, 2004 7:20 PM CST

Thursday, September 23, 2004 11:33 AM CDT

Yesterday was blood work day for us. Every Wednesday is blood work day for us... Ugh! Erica has had more picks and pokes in her 15 1/2 months of life that an entire family has in a lifetime.

I would estimate that she has been poked at least 75 times for far. Between blood tests, IV's, Bone Marrow Biopsies... I just can't keep track of the needles that have punctured her baby-sweet skin (and our hearts).

I know there are children and adults out there that have DBA that have had hundreds of blood tests and many many transfusions month after month. I guess when or if we change over to transfusion dependant we would consider a Portacath for her.

Erica's blood tests are either done in the back of her hand, in the side of her head, or done by a finger poke in the side of her finger.

Her IV's have been in her foot, in her arm, in her hand and in the side of her head. That is... after they finally found a vein.

That was the most difficult thing for me (as a Mom) watching your child being held down and poked several times trying to find a vien. I had to be removed many times due to the uncontrolable sobbing. I just couldn't handle it... I felt so helpless and wished so much that it could be me and not her.

Thank God that the transfusions have ended for a while. She is currently taking the steriods and her Hemoglobin this week was 105. This was a good count, so we lowered her Prednisone from 4 mls EOD to 3.75 mls EOD.

Anyhow, another Wednesday over... with better results. Sometimes we don't know what is the worse of the two evils... the Steriods or the Transfusions... ARggggg... There are side affects with both - I guess we will continue to educate ourselves and pray that we will find the right path for Erica.

Over and out...

Paula

Monday, September 20, 2004 7:48 PM CDT

Erica is now 15 1/2 months old and was diagnosed with Diamond BlackFan Anemia at 6 1/2 months old.

Erica was admitted to the Emergency of the Children's Hospital of Eastern Ontario in August of 2003 with a Hemoglobin of 29 (normal being 105 - 135). She almost immediately had a a transfusion (packed red cells). Between August 2003 and December 2003 Erica had 5 blood transfusions and two bone marrow biopsies. The second biopsy is the one that came back void of any red cell precursors (this is when we knew that her bone marrow was not producing any of it's own red cells), and she was diagnosed at this time.

At the time of diagnoses she began treatments of Prednisone of 16 mls a day. Prednisone is a steroid that 33 per cent of DBA patients respond too. Erica responded to the Prednisone almost immediately. Between December and now she has been taper from 16 mls every day to 1 ml every other day, and then back up again to 4 mls every other day due to her marrow failing to respond to the low dose of steriods.

The Prednisone also lowers Erica's immune system. My husband has left his day job to stay home and care for her to eliminate her catching anything too serious in daycares. Erica has already battled RSV (a severe respitory virus) in February of this year.

The only cure for our sweet Erica is a bone marrow transplant. By some miracle, her big sister Cassidy (now 4 1/2) is a perfect sibling HLA match for Erica. Now it's just the decision to go forward that we are sitting on. The success rate is 90 per cent... but if you were to ask me 10 per cent is too big for me to make that decision at this point.

We are planning to visit Dr. Lipton in New York next spring. He has been working with DBA Patients for over 18 years.

At the moment, Erica has two choices; steriods or tranfusion. The specialists believe that transfusion are easier on the body than steroids.

Well that is about all I can write at this time. Thank you for wanting to share her story.

Paula

aka... Mommy

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