Tuesday, December 15, 2009

Quick Update

Hi Everyone,

Just wanted to let everyone know that Julia's PICC line came out Friday. After lots of screaming and crying, she was so happy to have the line out. She was dancing around shaking her bum and singing "no more PICC line, no more PICC line". She also asked me if we could have a PICC party. It was so cute!!! When she went to school on Monday she took her top off for her teacher and classmates to show them that she had no more PICC line......that's Julia.

She is due back at the hospital next week for blood work (she'll have to be poked.....she won't like that), and echo. Then we get a break for the holidays and return the 2nd week of January.

We would like to wish everyone a very Merry Christmas and Happy New Year.


Wednesday, December 9, 2009

Julia Update

Hello Everyone,

I apologize for the length of time since the last update, but things got a little crazy. Julia was admitted to hospital on November 19th (Emily's 1st birthday), for fever/neutropenia. She was feeling unwell and complaining of ear pain so I took her to the pediatrician thinking she had an ear infection. When we got to the pediatrician's office she was running a fever of 39.3, and did in fact have a bad ear infection. He immediately called down to Sick Kids and we were instructed to bring her down immediately. For those of you who don't know Julia continues to be neutropenic (no white blood counts), and because of this the protocol when she gets a fever is automatic admission with IV antibiotics until they can prove that there is no bacterial infection in her blood. The reason for this is because people who have no white counts can't fight off bacterial infections, and could go into septic shock. Perfect example, Julia's ear infection wiped her on her butt because her body couldn't' even fight off a simple ear infection. While in hospital she also developed some stomach issues, and low magnesium levels. What was suppose to be a 1-2 day admission turned out to be 6 days. We had to give her injections daily to boost her counts, and give her IV magnesium because she could not hold her own magnesium levels.

After being discharged on the November 24th, we had to be back that Friday the 27th for Oncology clinic. We arrived at clinic Friday and Julia spiked a fever and was looking very unwell. Her Oncologist also detected a heart murmur that has never been there before. It was complete chaos. We were immediately sent to the day unit and Julia was hooked up to antibiotics as her Oncologist paged the transplant team about the murmur. I was alone and started to completely panic. I began pacing back and forth and then just broke down in tears to the doctors. Cardiology did an Echo and reassured me that the echo looked good and the murmur could be from the fever. I had to cancel Emily's 1st birthday party when Julia was admitted and I had rescheduled it for that Friday night. The thought of being admitted and missing Emily's party was to much to bare. Because of this the doctor allowed Julia to go home that night with the condition that we would return Saturday for another dose of antibiotics. So we came home (just in time for the party), had Emily's party (a bundle of nerves), and went back to the hospital the next day. What a nightmare!!!!! One thing I will be sure to tell Julia when she gets older is that she has impeccable timing!!!

Julia was scheduled to remove her PICC line this Friday, but after dropping counts, rising EBV titers (this is the kind of PTLD she had - EBV driven), and generally looking unwell, the doctors were unsure if this was a good idea. After numerous e-mails back and forth we have finally decided that the risk of infection keeping the line in is to high. Generally a PICC line is used for 6 months and Julia has had hers in already 7 months. The plan is to see the doctor Friday morning, do all the blood tests, have a complete physical exam, and then if all looks good be sent to IGT for removal of the PICC.....I hope.

Julia has been feeling a lot better the last week, and I think it just took her a little extra time to bounce back from the ear infection. As I've stated before the neutropenia is a big problem and can really set her back from the simplest of infections/viruses. The problem is once an Oncology patient the minute these kids get sick (with anything), everyone worries. Julia's repeat CT has already been scheduled for February 26th.

On a happy note we have confirmed Julia's "wish" trip with Children's Wish. We will be leaving on February 14th for a week. We will be going to Orlando and staying at a special resort called Give Kids the World (which is a Disney resort only for wish kids). We will have 7 day front of the line passes at the parks, and Julia will have a princess makeover, lunch with Cinderella in her castle, and get to meet all her favorite Disney characters. She is so excited and asks us everyday how many more sleeps until we go. We just hope and pray that she will stay well enough until then.

I would like to take this opportunity to thank Styles of Creation hair salon and Farmer Jack's for the donations they collected for Julia. A special thanks to Avante Property Services for your generous gift to Julia. We are very grateful and touched by these extreme acts of kindness.

I will keep you all posted on what happens Friday. Please cross you fingers and say a prayer that all goes well and as planned.