Olivia's Medical Update!

So now that we have moved to Melbourne we have had to get a whole new team of doctors to oversee Olivia. In Sydney we had kind of reached a stand-still where everything that had been found had been dealt with and no one could explain why Olivia wasn't growing but assured us that she would be monitored. In this sense moving to Melbourne was a good thing. New doctors and fresh ideas.  Since we are still in the same country, all her records are on a national data base so it was not too difficult to get a team to pick up where Sydney had left off.

Our new GP is very proactive. After meeting with her once she got on the phone and sorted out a team of specialists she wanted Olivia to work with. She said, rather than meet independently with a pediatric urologist, gastroenterologist, endocrinologist, dietitian and pediatrician that we should have one BIG meeting with all these guys together. I thought 'well, that would save me a lot of time'....and also 'that is going to be one HUGE consultation fee' :-)

I was passed onto a Pediatrician who was supposed to pick the team.  It was a good meeting but first he wanted to make sure we had all the players we needed. So we were sent to the hospital for a day to do a series of test. 

The first test was to explore the possibility of Olivia having Cystic Fibrosis (CF). This is done with a 'sweat test' basically they put electro things in your elbo pits to make you sweat. They wipe your arm with different clothes, chemicals etc... and then send the clothes off to the lab to be looked at. If you are too 'salty' then you probably have it and you do more tests to confirm.

I could talk for a whole hour about the doctors hypothesis about Olivia having CF but I don't think she has it as she has NEVER had a lung infection and because it is tested for at birth in America (where she was born)...so you would think I would have found this out 8 years ago if it was CF right? Anyway, I am not going to type out all the dialogue between me and the Dr.'s unless I get a positive test result back. Keep you posted--but seriously don't worry yourselves.

 They make you bundle up to make you sweat as much as possible during the test.

 Comics and clown doctors make a hospital visit somewhat fun right?

 Here are the probes stimulating her sweat glands

The second test was a VCUG (to see if Olivia still has any wee refluxing up from her bladder to her kidneys). 

The third test is a renal scan to see how much urine she voids when she wees and to examine any scarring in her bladder.

The fourth test was to test for something called 'slow transit time'  The gastroenterologist wants to see if the constipation is an effect of something bigger or just the cause. You have to eat purple corn and then time how long it takes to come out the other end. :-) If it take too long, then your body takes out too much water when your food is in your intestines and then it gets stuck. There is nothing you can do about this, your body just takes longer to digest food that other people's bodies. So if you know this about yourself, you compensate by drinking more fluids, fruits, exercising and taking a stool softener for life!

The last test was something we have been working on for a few weeks (a food intake chart). We have to write down what Olivia eats, what time she eats it, how she feels afterwards and how her poo looks afterwards :-)  I guess the dietitian is looking for a pattern? The only pattern we have so far is that when Olivia eats really fatty foods, her poo is very smelly...so I would deduct that fat is bad (brilliant I know!)

Anyway, we went to the brand new hospital called the Melbourne Children's Hospital, and I have to say it was a fantastic experience for a few reasons. (1) look how cool the inside is? Yes, that is a real aquarium!

Check out this it is a flat, touch screen video game! Can't beat that!

Secondly, unlike every other VCUG we have had done, Melbourne has got it down.

To sum up:

WORST Experience--VCUG in America (fairfax hospital pediatric wing--HAHAHAHA)- not sedated, couldn't get the catheter in (tried 4 times) had to hold Olivia down (15 months)--she was screaming, in pain and wouldn't hold still to take the pictures. couldn't talk her into weeing on the table etc....

BETTER Experience- VCUG in Oxford, England (Oxford Children's hospital) & Sydney, Australia (- sedated, she was asleep for the VCUG. Catheter went in, took pictures and woke her up. Sore afterwards and a lengthy procedure with putting them down and waking them up.

BEST experience- VCUG in Melbourne, Australia. Inserted radioactive material through an IV (no catheter needed) took pix of her back, then brought her over to a toilet that had an x-ray devise on the back of the toilet. She wee'd and they took pix of her back. We walked out 5 minutes later. COOL HU!

Now if you think medicine has changed since our worst experience at 15 months to our best experience at 8 years you are wrong. My friend in the USA just had her daughter go through our worst experience 2 months ago (and her kids is fully potty trained). I think Melbourne has cool x-ray machines attached to children's toilets, which save EVERYONE a lot of hassle, when it comes to VCUG's!

To make the experience even better, we finally got the long awaited news that Olivia's renal functions are completely corrected! She is normal, all better, has no more problems with her kidneys; and while she does have some permanent scarring she could not be healthier!

After Olivia's operation 2 years ago (this March) her urologist refused to do a VCUG to check if the operation had in fact corrected Olivia's reflux. He said this because he was afraid it would put too much pressure on everything that had been operated on and he didn't want to mess anything up. So we waited, a year and he asked to wait another year since her recovery was so bad. Every time Olivia said her tummy hurt I wondered if it was kidney related or not. Now I know it is NOT and that the operation was a complete success! I could not be happier.

Overall I am going into the relax mode. While in the hospital I looked around and saw really really sick kids. We were not one of them. In fact Olivia was skipping off to her appointments.  So anyway, the rest of the results to come--keep you posted!

Australian Grand Prix- Formula 1 Racing!!

So this weekend was The Australian Grand Prix- Formula 1 racing! Grand Prix races are held all over the world. The annual race in Australia is hosted in Melbourne. We attended Saturday afternoon (the finally was Sunday) to watch cars qualify.

Thomas was in heaven thanks to the Pixar movie 'Cars'

We saw the franchesco's race first (wow they were REALLY loud),

 Followed by the Lightning McQueens. 

Saw one wreak +  the tow trucks, saw the helicopters, saw the fancy airplane show, 

had some hot dogs and ice cream and then we went home.

 It was a great afternoon out and I am glad we went!

Curling....?

So now that Stan is part of the Melbourne team at Bain he gets to join along in the Bain activities.  This weekend = curling... :-) 

 Yes he is pushing something with a broom...and yes it is an Olympic sport....!?

 

Strawberry Picking on Labour Day

This past weekend was Labour Day in Australia. We had a 3 day weekend and decided to go strawberry picking to welcome the new fall weather! 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I have good friends!

So I just wanted to say "THANK YOU" to all the people who have helped the Flamms. I realize I did a pitch for one of MY FRIENDS, I just didn't expect so many people to do cheek swabs and donate money to someone who was a complete stranger to them!


 I had this realization while I was driving the kids around after school. I was thinking about all the people who said they would donate money. Most were family members--already Amanda has said money is coming to her mail box or through the web site.  I think I had over 10 emails of people who said they would give, I am sure there were many more who donated without even letting me know. One person was someone I hadn't talked too since 2007.  I then noticed my old Oxford congregation (the church we attended with the Flamms while living in England for a year) was holding a ward activity to fund raise for the Flamms. I had another friend from Sydney sew a quilt for the Flamms (do you have any idea how much that will cost to ship to the USA?....hahahaha).


Honestly, I couldn't believe it! I thought, I have good friends....no really I HAVE REALLY GOOD people around me who support any cause I am worried about; and I just can't believe it!


I maybe spent 10 minutes emailing or FBing an update about the Flamms and already their family has been helped so much! Anyway, I just wanted to say thanks, because I know that if anything were to happen to us  you guys would all be there for me. I know you would because you have all been so generous to a complete stranger just because I asked you to be! So thank you--Thank you so much!!!

Here is the most recent photo of Millie...Ariel came to visit! (Do I have any friends in Utah who want to dress up as anything...princess, clown etc... because Millie would LOVE that!) She is staying at --(Primary Children's Hospital)--and will be there for at 6 months ...so Millie isn't going anywhere!


She has lost all her hair again and just underwent an unnecessary surgery...which is bad because her body has no immune system right now and she is fighting so hard with the chemo that I don't think her little body can handle repairing something else right now.  What a pain! Anyway, I will keep you posted on her progress.


If you still want to donate here is the web page:  http://meetmillie.realcove.com 


Or if you are not internet savvy and want to write them a check here is their address (I am only posting this because my blog is private so it is safer right??)  Brady & Amanda Flamm2873 Etienne Way, Sandy, Utah 84093 USA


And last of all, here is the flamms web page if you want to follow them to see how Millie is doing: http://bradyandamanda.blogspot.com


Love you all--The Swintons

Marrow 4 Millie!

So, while Stan was doing his MBA at Oxford University, there was one other LDS guy in his MBA program. Brady Flamm, we became quick close friends especially because they had a daughter Mary's age (2) who had her birthday just the day before (September 28th, Mary is the 29th).  They were nursery buddies!

While at Oxford we took a few trips with the Flamms and discovered England. After I had Thomas, the Flamms took care of  me, had us over for dinner, helped with the girls etc... Here is a picture of Millie feeding Thomas a bottle! 

1 year after the MBA Millie was diagnosed with Leukemia: http://bradyandamanda.blogspot.com.au/2009/12/battle-with-leukemia-begins.html

After 2+ years of  battling Leukemia Millie was discharged in early February of 2012. They had a huge party! SO PROUD OF YOU MILLIE!

And three days later they found out the cancer had come back (which is very unusual for her type of cancer)...it had infected 80% of her bone marrow and in order for her to NOT die, she needs to do another year of treatment and get a bone marrow transplant. 


Millie is supposed to be celebrating her discharge at Disney Land RIGHT NOW, but instead she has lost so much hair her mom is ready to shave her head again...which I am sure has got to be very defeating for everyone around. SO--the point of this blog. Millie needs help, because she cannot beat cancer without a bone marrow transfer (something she needs in exactly 6 months!) Unfortunately, bone marrow is type specific (like blood types) and Millie needs a match to get a transfer. They tested her little brother to see if he is a match to donate his bone marrow (as 1/3 of all siblings are), but found out recently that he is not. Neither of her parents are a match as well.



Here is a snipped I took from her blog today: http://bradyandamanda.blogspot.com

The number one question I get from everyone right now is, Have they found a match? The answer is sort-of. When we met with the bone marrow team to go over what we should expect over the next 6 months they mentioned that they thought Amelia would have hundreds of possible donors. She doesn't. We do however have around 7 unrelated POSSIBLE donors and 4 cord blood donors. I say possible because these matches have come from the bone marrow registry and they are 6 out of 10 matches. Amelia needs a 10 out of 10. When you swab your check and send it in they can only test 6 markers and there are a handful of people in this world that are a 6/6 for Millie. When our insurance approves the doctors to look further into these possible donors we will know more with what we are dealing with. We have been told that normally insurance will approve them looking into about 4 total. At that point they will try to contact the possible matches and have them do a blood test to see if they are a 10/10. If there are none I'm sure the insurance will pay for more tests, but if not, then Brady and I will pay for the other donors to be tested. If there are no 10/10 matches at that point then I don't know what happens. I guess we will have a sit down and talk options; is it safe to wait and hope to find a match, or do we go ahead without a perfect match? I pray we won't have to answer those questions.

We are all doing the best we can, but I am not going to say it's been easy. It hasn't. Some days I am numb and go on like we are there for yet another fever, not because my baby is fighting for her life. Other days I can't get a grip and I cry over everything. Those are the days that Amelia is depressed. Those are hard days. I seem to be the one that takes most the blame. I'm her mom, and I shouldn't have let this happen. Some days she screams at me how much she hates me and that I'm a horrible mother, and a liar. These days are hard. Then there are times when she has her same old giggle. Man she has a good giggle. With her smile come the days where I know she will be alright, that we all will be alright.

Wonderful Brady, there are no words for my husband. No words. He is the world and he makes everything better, for everyone. I love him.

I'm rambling like always and I'm not even sure any of this post made sense, but I wanted to get it down. Can I just say thank you to all of you. Really, all of you. If you are reading this blog, I know you have said a prayer for Millie, cooked me a meal, brought treats, given me a hug, written to let me know you're there, let me laugh with you, got me a cleaning lady, surprised Millie with an iPad, made it so I wouldn't have to worry about cooking for a very long time, taken Austin, sat with Millie, sent her an email, thought about us, taken out my garbage cans, shoveled my driveway, sat with me through the night, or understood that when I said I was OK, that I really meant please pray. Please pray.

So there are two things that you and I can do NOW to help them (1) do a bone marrow test maybe YOU will be a better match!--click on the link below...


  http://marrow.org/Join/Join_Now/Join_Now.aspx?promo_code=marrow4millie


In order to get tested, you swab your cheek with a q-tip, send it to a lab and you hear back if you can help...and you don't hear back if you are not a match :-) 


and (2) donate $...They had a really hard time when this site was set up because they don't take 'hand-outs' but they really do need the financial help and the money raised lifted a huge burden off of their shoulders.  http://meetmillie.realcove.com Sometimes when someone is sick the medical bills are another undeserving stress that often puts people over the edge and we need her parents to be as strong as possible right now.

                      Hang in there Millie!!