The Latest & 5k Warrior Walk

This last week was sprinkled with good things happening.

- Madeleine is now weighing 7.5kg/16.75lbs!
- Her third tooth broke through and is coming in slowly
- Madeleine is transitioning from sitting to the floor (she was previously either sitting up well or falling over as in "timber" with no in between)
- Eating is getting better every day! She loves peas.

We ended up having our weekly clinic visit on Friday. Her labs have consistently been really good, so the Doc is changing her lab draws to our actual clinic visits to still keep an eye on her but we no longer require a home health nurse - great! one less thing. Jeff and I will also be meeting with Dr Davidson this upcoming week to discuss possibly prescribing new medications that would be a proactive approach to continuing warding off the ATRT disease. I'll post more on that when we find out and make a decision.

One more update:

I had previously posted that we got involved with the Don't Worry Be Happy Foundation to help with our family's costs/Madeleine's medical. The money raised from the t-shirt sales and direct donations to the Foundation go directly to the hospital. Our only caveat is we have to meet a minimum of 30 shirts sold before the money can go to the hospital. I'm asking anyone who has already purchased t-shirt(s) please send me a photo for our photo album and fundraising effort.

Next Sunday, August 26th the foundation is having a Warrior Walk, and we'll be going. I hope we can at least get to 30 shirts sold, that's really all I'm trying to achieve so the people who have already supported us in this foundation's effort won't be wasted. We appreciate everyone's support! Thank you!

sister Jordyn

Another Lesson in Faith?

I can't decide if what's transpired this morning is a big mistake or a blessing in disguise.

We had a 9:00a appointment this morning to meet with a genetics MD to discuss Madeleine's genetic diagnosis. Lately both of the girls have been having trouble sleeping completely throughout the night. Needless to say, they both awoke individually in tears (in separate bedrooms) around 5am, and we all literally slept right through our appointment.

Jeff & I had been discussing this appointment for the last week; was the timing just really off? 

She has completed treatment, and whatever we do know is that the treatment should be sufficient in preventing a relapse. From the medical perspective they can not tell us absolutely for sure 100% that the ATRT won't/can't return. But then they told us in January that there's only a chance she would survive at all, and here she is. Lesson #1 in faith.

The INI1 gene is so complicated and we can only begin to try to understand everything that it means for Madeleine. In some ways- many ways- too much information is a bad thing. At least while we were in treatment and since we've been home, a trip to Children's Hospital of Philadelphia has been out of the question (this is where the leading INI1/ATRT geneticist is located). There isn't much known for sure, is what we've been told. From our Facebook support group of ATRT parents, it seems that many of those kids do not have the mutation or deletion. The only thing we really want to know is, based on the fact she has the genetic mutation, does this increase her chance/ensure she will relapse?
We are extremely thankful to all be under one roof, to make dinner, to just be home; at the same time, the anxiety and stress are still very much the same, if not worse. Welcome to cancer survivor hell, where now that the imminent danger is gone, the very long wait-and-see period settles in. We don't stop living our lives, in fact we're still trying desperately to rebuild our life; rather, we live like we/she were dying, not taking a moment for granted. It's easy to say that, hear that in a song or a cliche, but for us it's REAL. Her tomorrow isn't guaranteed to us. Although none of us really are...but for Madeleine...God, we pray she survives this FOR GOOD, FOREVER! and ever. That's all we really want to know... and they can't tell us that. Her next MRI is scheduled for the end of September. As we watch her fuzzy hair grow in like a buzz cut, it's hard to not be frightened. To see her hair grow in that quickly and be reminded that THAT is how fast the disease grew into a tumor. When that scan comes back clear, and the next one in December, and the next one in March...perhaps then the anxiety will begin to subside. It's like a burning lump in the back of the throat that never really goes away, something like persistent heartburn that there is no tums for. It's aching fear consuming our insides. We still very much need prayer- prayer that some sanity comes soon, decompression soon. I hate that this has or will become detrimental to our future. We've overcome so much, yet it still feels like the longest freaking marathon in history.

Bright Eyes

Sent from my Verizon Wireless BlackBerry

Adventures in Babyfood

Madeleine is doing really well; it's the rest of the family that is still struggling!
I don't think I have mentioned that Madeleine's counts have, for the most part, recovered; she has not required any transfusions in several weeks now. Our labs and clinic visits have both been reduced to once per week. Eventually labs will become every two weeks, then once a month at which time she will have the surgery to remove her central line. We're scheduling her next MRI now, if insurance allows, for late September.

Madeleine's occupational therapy started last week with an assessment and Monday we began therapy. It was amazing to see how small changes make such a HUGE difference! It was as simple as changing the consistency of her food to something more viscous and actually applying a slight pressure to her tongue with the spoon and she's eating like a champ! I literally burst into tears within minutes of beginning her session, she was eating so well as if there was never any issue to overcome. I know that it isn't my fault; it's not my fault her delays, her challenges, her inability to progress (up until this point) and I have to not feel guilty for these things I know she will eventually overcome. However, it is hard for me to not feel responsible. Perhaps that is why I was so emotional at watching her not only take interest in the food but really successfully take it into her mouth and swallow. The littlest things can be the biggest moments...

We are taking it slow because as the assessment indicated, her body hasn't quite learned how to handle food yet; she had issues with swallowing food and now that's addressed, her gut has to grow accustomed now to processing actual food and moving through. From the beginning most of the advice we were being given was for smooth baby food (store bought is not my preference) and to add olive oil or some other fattening oil or additive to give her the extra calories. That wasn't working out very well for several reasons. Now that she is learning to eat, the best thing happened: she loves avocado! So now twice a day we have rice cereal and avocado. She is still not tolerating the bottle and we'll continue experimenting with various types of cups to help her move onto taking liquids as the average 10-month old. Baby steps towards where she needs to be.

10 months old

I also want to take the opportunity to thank my very good friends Charley & Lucie Bell. This dynamic duo are amazing people, amazing parents, generous friends, ambitious business owners - basically all around WONDERFUL and inspiring human beings. Besides being our friends for years, they have really gone above and beyond what I ever would have expected from anyone in trying to help us financially. Charley is behind the Scartissue Oddball Society (Madeleine's t-shirt) and The Antique Toys ("Dear Madeleine" song), and Lucie opened her dance studio, Room2Dance for discounted dance lessons for two full days. Each and every time I have thanked them, they basically refuse to accept my thanks with an "of course" and "no need to thank me." True friends, truly generous hearts, these two. I would certainly appreciate any patronage of their dance studio, the band, SOS, even the Covina Business District as a means of showing appreciation to the Bells. I believe they too will have generous gifts as a result of their selflessness. I love you guys, Charley & Lucie. Thank you!