Monthly Archive: September 2014

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Cancer Free!!!

18.09.2014 Posted in Uncategorized 5 Comments

The title of this post says it all – Lucy is OFFICIALLY cancer free! Of course, this was assumed, given that her treatment has ended, but test results received today confirm it! Praise God! Thank you for so many prayers! While we remain guarded, we are more hopeful than ever that Lucy will defy the odds stacked against her and remain cancer for the rest of her precious life.

Tomorrow we head to clinic for IVIG and are looking forward to a fun weekend!IMG_1692.JPG

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Still Waiting

16.09.2014 Posted in Uncategorized 2 Comments

This Thursday will be two weeks since Lucy’s bone marrow sample was sent for testing and we have not heard results yet. The wait is agonizing, but we are trying to keep busy and move on. This is the next stage that we longed to reach, and it is forever – watching, waiting and hoping.

Besides some typical toddler troubles (sleeping, picky eater) Lucy is doing well. She doesn’t seem to mind waiting … as long as Sesame Street is on TV.
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Lu Lunatics Shirts Are Here

8.09.2014 Posted in Uncategorized 3 Comments

If you’re planning on joining us on September 27th at the Leukemia & Lyphoma Society “Light the Night” walk by becoming a member of the Lu Lunatics/Jack’s Pack, then we want you looking sharp.  Our t-shirt specialist, Matt Sebek, has put together our team shirt design and we’re currently taking orders. 

We are not using the shirts as a fundraiser as we wanted to keep the costs low since most of the people joining our team are already donating in some fashion to the LLS.  These babies are strictly to show some team unity for the Lu Lunatics and Jack’s Pack.  If you are going to be participating and want to sport the team shirt, just e-mail me at jbakes1@yahoo.com your size(s) and we’ll add them to the order.  We will arrange for payment on the night of the walk (or work something out).  Try to get your orders in by mid-week so we can put in the bulk order and leave enough time to guarantee they’re ready by the 27th. 

LLS Shirt

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Join the Lu Lunatics & Jack’s Pack

5.09.2014 Posted in Uncategorized 1 Comment

In most cases, donation to a national charitable foundation comes with minimal info on where your dollars are being spent.  Unless you happen to be an abnormally diligent donor, we trust that the money being sent in to the larger pot is being allocated as needed and we go about our day happy to have contributed.  And there is absolutely nothing wrong with that.

But we’ve also learned that it can be much more powerful when we encounter an opportunity to see specifically where our money is going, who it is helping. 

On September 27th, we are participating in the Light the Night walk that benefits the Leukemia & Lymphoma Society.   We are asking everyone who can make it that night to join the aptly named Lu Lunatics (we’re crazy for Lucy!) at Forest Park on September 27th. 

We have also partnered up with Joe and Kelly Pimmel and merged the Lu Lunatics with their team – Jack’s Pack – formed to honor their son Jack who fought valiantly against AML until he passed away from complications on July 29th.  Together, our hope is to raise over $10,000 for LLS research, a threshold which gives us the option of choosing specifically where our funds are allocated (we’re 25% to our goal as of today).  Needless to say, if we hit our goal, we will request that the total amount raised is applied to pediatric leukemia and lymphoma research.

With Lucy now in remission from Acute Lymphoblastic Leukemia and finished with her treatment, we are looking forward to celebrating her ongoing journey with friends and family, but we are also keeping a close eye on the medical miracles that are being performed right now on children who have the very same disease she was diagnosed with. 

If you’re looking for tangible evidence of the progress that is being made with the help of donations to the LLS, I want you to watch one short video (check out the YouTube link if the video won’t load):

This study along with several similar ones going on at various hospitals around the country are not a distant concept like many medical “breakthroughs” appear to be.

Kenda and I have been following along with the story of an infant who was diagnosed with ALL just two months before Lucy. After a relapse following her bone marrow transplant, she was enrolled in a clinical trial using the very treatment that was described in the video above.  Just last month she received her genetically modified T-Cells and as of today she is cancer-free.  If the research and technology involved with this treatment hadn’t progressed to where it is today, there would be no more alternatives at this point for someone in her position.  These are treatments that are becoming more and more realistic and they rely on organizations like the LLS to provide them with critical funding in the early stages of the research.

While we hope and pray that Lucy will never see her leukemia return and have to face this battle again, we want to do our part to raise awareness and support the Leukemia & Lymphoma Society as they work with the medical community to fight blood cancers of all types. 

Please join us on September 27th and become a part of the Lu Lunatics & Jack’s Pack.

http://pages.lightthenight.org/gat/StLouis14/LuLunaticsjackspack

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The Big Test

2.09.2014 Posted in Uncategorized 1 Comment

A quick Lucy update. The last few weeks have been busy and boring at the same time. Lucy seems to have finally shaken the worst of her cough that has been ongoing for almost 6 weeks! A follow up chest X-ray at our last clinic visit showed glorious clear lungs for which we a re grateful. Because of this cough and lingering effects of a full year of chemotherapy, Lucy’s immune system is still quite low, keeping us mostly stuck at home, hence the “boring” part of our lives. The “busy” part is Lucy herself. She is a wild one! Recently we have been seeing the increased energy Dr. B predicted. Lucy was always very active, but her cheerful personality is really beginning to shine! Lucy’s increased appetite has also kept me busy making snacks, washing lots of little snack bowls, and going to the grocery store to buy snacks. It is awesome to see her eat real food! In a matter of weeks we went from distracting her with toys so we could sneak in spoonfuls of baby food to seeing her feed herself scrambled eggs and yogurt with a fork and spoon! It has been an amazing change.

On Thursday this week Lucy will go to clinic for a monthly antibiotic infusion and a really big test. She will undergo anesthesia (never fun) to have a bone marrow sample taken to test for any sign of leukemia. This sample will be sent off to Seattle for the most thorough testing to be absolutely sure that she is in remission. We appreciated all good thoughts and prayers for our little Responder.

Check back here soon for the latest EXCITING information about our Light the Night team!

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Outside is generally a safe place to take Lucy, but it has been too hot lately, so these girls have been spoiled indoors. A special dinner treat of mac and cheese and juice boxes in front of the TV, showing Frozen. Lots and lots of Frozen here.