Tuesday October 18, 2011

Haven't posted in awhile as everything was going along smoothly.  Elaina had her first Oncologist appointment and it seemed that the wait and see approach was to be taken.  Yesterday Elaina did not eat all day and was cranky.  A call to the Oncologist brought her to the ER at Health Park last night where she was admitted due to fever, mild dehydration and some blood in stool.  Another battery of blood tests, x-rays and cultures were performed.  So far all tests are back as negative except we are waiting on some cultures.  IV antibiotics were administered and she will spend 2 or 3 days in the hospital for observation and final delivery of antibiotics.  So far today, the fever is down and her appetite is returning.
The Hemangioma  is at the same size as before and has not grown, nor is it the source of infection.
It is great to have Lauren here as she is attending to the other kids, getting them to and from school while Frank returns to work.
I will post again as I know how she is doing.

Monday October 10, 2011

Elaina had her first Oncologist appointment on Friday October 7, 2011.  The Doctors were well received by Meghan and she felt very comfortable being there.  They made it a point to let her know they are on call 24/7 and she is not to hesitate in calling on them if she has a concern.  The Doctors felt given the placement of the tumor that a wait and see attitude was the best course of actions to take at this time.  Treatment to shrink the tumor is with steroids and the side effects that accompany this course of treatment are riskier than doing nothing for now.  The Doctor felt that the tumor would likely grow until she reaches the age of two and at that point the mass should begin to shrink on its own.  We are all hoping he is correct.  So for now we wait, examine test and retest.
Elaina also had her first pediatric appointment and is doing fine.  She was almost at birth weight and her billie rubin is in the normal range.
I will keep everyone posted as I can.  Thanks for the well wishes and prayers.  Please keep them coming as continued support is appreciated.

Monday October 3, 2011

Good news keeps rolling in.  Elaina was released from the hospital late on Friday night September 30th.  The liver specimen was sent to the Center for Liver Diseases in Virginia.  The pathologist there concurred with original diagnosis.  The name for the condition was changed from hemangioendothelioma to infantile hemangioma.  The tumor is benign which is the best outcome we could hope for.  The tumor is located on lobe 1 of the liver and that lobe is the most complicated so there will be many examinations and opinions by the experts before any course of treatment will be determined.  The surgeon stated that  it may even shrink on its own so it will need careful oversight.  He even stated that had the lesion been on any other lobe of the liver he would have removed it during the exploratory surgery.  Elaina has a scar that runs transverse across her abdomen following the rib cage line.
So followers, keep tuning in and I will try to write Monday to Friday with weekends off.

Thursday 00/29/2011

There is guarded optimism! Of all the bad things it could be, the dr thinks it is a hemangio endothelioma. The sent tissue to another path lab for verification and if they concur she can go home in about 3 to 5 days! From there she will need a specialist to evaluate the situation. This could resolve on it's own. I will keep you all posted. Thank you everyone from the bottom of my heart for thoughts and prayers.

Wednesday 09/28/2011

Well another day of waiting for biopsy results.  Should be in any day and by Friday at the latest.  Meghan was able to hold Elaina for the first time since the biopsy surgery.  I am sure this has been very hard on her and my heart goes out to her.  The nursing staff removed the belly line and that is what allowed Meg to be able to hold and feed Elaina.  Elaina's billi rubin was below 10 today another good sign.  Keep the thoughts and prayers coming!

Tuesday 09/27/2011

Well today looks so good.  The breathing tube from the operation yesterday was taken out late in the day on Tuesday which was sooner than expected.  Mom and Dad cannot hold baby yet because of the incision but may be able to later today or tomorrow.  Meghan sent me a picture which is below.  She has her eyes open and she looking like hey that is no big deal!  Her billi rubin is down to 11 and she still needs the UV lights.  We are all hoping for results by tomorrow and really hoping that the DR was correct in his belief that the tumor is benign.  Keep you informed day by day and I am hoping that I can see her tomorrow during the day and get to hold her for the second time.  This should never happen to a baby!

Follow up on Monday

Elaina has had her biopsy.  They did an incision instead of a needle biopsy.  The MD that did the procedure stated that the tumor looked benign to him.  Please let the good thoughts and prayers continue.  She will still have a long journey ahead of her either way but if it is benign the outlook is so much brighter.  That is a little good news to share and I hope this trend continues.  I will try to visit tomorrow and obtain some photos to post.