quick update

The first day of school…I miss teaching already. I always knew I loved the kids in my class (and my colleagues) with my entire heart, but it takes not being there to realize just how much. I perused the 1st-day photos on Facebook today with pride (if I’m honest, with a little sadness, too). But, I’m certain that Lincoln families and staff will keep me in the loop of what’s happening there!

Now, just to keep all of you in the loop of what’s been happening in the Timmer home., here’s a brief synopsis. I know, it’s been a long time since we’ve passed along the information!  By now you should all know that we expect the unexpected. But, about a week and a half ago, I (Jen) was diagnosed with epilepsy. Epilepsy! It is the same type as Sam; the same type as my sister, Kristi. The neurologists assume that I was probably genetically predisposed, but my cancer lowered my threshold to the point where I began having seizures. So, I have now started taking antiepileptic medications and am tolerating them well. The meds have yet to control the seizure activity, but for those of you familiar with epilepsy, that would be a miracle to do so this quickly. This gives me a whole new outlook and empathy of what my child (and our sweet friend, Elena, who has different types of seizures than Sam and me) deals with daily.  These are tough kiddos!

Additionally, last week we received news that “an area” was found on my latest mammogram. We’re waiting to find out what exactly that means and will entail. But, Chris and I are incredibly thankful for my medical oncologist at the U of M Comprehensive Cancer Center for her thoroughness. We’d appreciate thoughts and prayers while we wait. Waiting is the WORST.

Thanks for all the texts and messages of encouragement today, as I do not get to return to school this year. For those of you who already knew about the epilepsy diagnosis, I appreciate your chauffeuring, since I can no longer drive. I appreciate my colleagues who were willing to cry with me when I heard the news about the new “spot.” We could not do this without you! 

Magical Wishes 5K

If you are looking for something to do on Wednesday, August 9, we'd LOVE for you to come and run with us at the Magical Wishes 5K. Ok, if we're completely honest with ourselves, this year we'll be walking the 5K! We're looking for at least 10 people to sign up to join our family in walking/running.

If you are unfamiliar with Magical Wishes, it is a 5K that was started by Trista Kimber, one of Kai's Make-A-Wish volunteers. The mission of Magical Wishes is to rise awareness of Make-A-Wish and the hope it brings to children facing life threatening illnesses. With that in mind, the goal is to raise enough money through the race to grant a child's wish through Make-A-Wish Michigan. Last year, Magical Wishes raised just over $6,000, enough money make a Disney wish come true for a child battling cancer!

In the spring of 2016, Kai was granted the wish of a playhouse (with a blue slide). From learning his wish was granted, to being able to Factime with the builder to see his blue slide, the Wish process brought Kai hope in knowing that there was knowing there there was more to look forward to in life than pokes and heart surgery. It has given him the opportunity to be a "regular" child. Not only that, but our family gained life-long friends through the process. So, Make-A-Wish Michigan and Magical Wishes 5K hold special places in our hearts.

If you're interested, here is the link to register...
http://www.active.com/hamilton-mi/running/distance-running/magical-wishes-5k-benefiting-make-a-wish-17-2017

Also, just because, here is a link to a short video that shows Kai's wish:
https://www.youtube.com/watch?v=D0wHisbe1Ns&feature=youtu.be

Pulled Pork for a Cause

Vitale's and an update

If you don't feel like making dinner tomorrow night (Tuesday, May 2),  my school colleagues have a solution for you...head to Vitale's in Zeeland tomorrow night between 4:00-8:00! They have organized a fundraiser with Vitales...so grab a pizza or two! Just print off the attached flyer and turn it in with your order.

In the way of a quick update, our family has been to Ann Arbor 3 times in the past week, with one more trip coming this week. We are completely sick of being in the car (and Chris and I are really  getting sick of listening to Frozen and Moana soundtracks), but the appointments have quite been productive. 

Kai also had GI, endocrinology, and pulmonary appointments last week. We made a couple of med changes and are waiting for chest x-ray results. But, all in all--especially for Kai---the appointments went well.

As I mentioned before, Sam's initial genetic testing showed abnormality in the form of a chromosome duplication. We met with the geneticist today and plan to move forward with doing full exome sequencing (reading all of his genes).  He also will have FISH testing completed; this will  help doctors locate the placement of his extra chromosome. At this point we know he has an extra 8th chromosome, but we are not sure if it is in sequence or is hanging out in some random place. This test will tell us where it is located. I always feel so impatient while waiting for genetic testing results to come back!

Recently, I  met with oncologists at the Comprehensive Cancer Center. They had some additional concerns which led to further testing being completed there and I am now also scheduled for an MRI on Friday. Hopefully we will have good results to share soon!

Thank you for all of the support through all of this!

Last chance...and quick updates!

I just heard that over 400 Team Timmer shirts have been ordered!! We know you will wants yours, too. You have until tonight to make your purchase...don't miss out!

Remember, if you are not in the area or able to pick your shirts up from Lincoln Elementary on the 26th, Chris and I will gladly make sure we get them to you!


Also,here are just a couple of quick updates:


Sam
Some of you know that we have hit some "bumps in the road" with Sam. He is not responding well to medications. We have an appointment coming up in Ann Arbor to look at next steps; we head to Ann Arbor, but Boston Children's Hospital is also covering his care, so the neurologists there will be able to offer input. It's great having 2 facilities that are working together for him. Also, we found out that Sam's genetic testing (chromosomal array) came back abnormal; he has extra chromosome tissue. So, we will be heading back to the geneticist to now "read" his genes to look for syndromes.

Kai
Kai has been "holding his own" for the last little while. But, as soon as we think he's in a good place, something usually comes up. He has had an increase in GI bleeding and pain lately. So, I head to Ann Arbor twice next week with him.

Jen
I meet with medical oncologists bright and early next Monday morning before heading to Ann Arbor with Kai. Because we're pretty loyal to U of M at this point (Go Blue!), I will also be heading to Ann Arbor to meet with the tumor review board and oncologists there soon. Of course, we can't forget about radiology oncology; I have appointments set up next week to meet with them.


We continue to thank everyone who has supported us in anyway!

Team Timmer shirts

After my cancer diagnosis,  my Lincoln Elementary colleagues graciously designed  t-shirts to support our family through all of our medical journeys. Online ordering for Team Timmer shirts has been open for a couple of weeks and ordering ends tomorrow, April 12!

So far, a couple hundred shirts have been ordered...and we know you will want one, too!


Below is the link to place your online order. When ordering, you will be asked for the "player name"; just put your name---this helps know who the order is going to! Also, shirts will be delivered to Lincoln Elementary, however, Chris and I are more than willing to ship them to you. If you need us to ship them, please just let us know (you can message either of us on FB or email chrisjensam@gmail.com).

https://teamtimmer.itemorder.com/

We appreciate all of the support!

Quick Update

Happy Saturday morning!

Chris and I just wanted to share a really quick update since next week is surgery week. The plan right now is for surgery to take place bright and early Tuesday morning. I'm sure my sentiments will change as we're actually on the way to the hospital, but I'm so ready!

For the past couple of weeks I have been sick (flu and sinus infection) and every time I think I'm finally better, a fever comes back.  I have had this fever just hanging around now for 9 days. We found out yesterday that there is infection in the blood stream. That probably explains why I've felt so crummy! Anyway, we're working on fighting that so that it doesn't change Tuesday's plan at all. So, we'd appreciate a quick prayer that this doesn't set us back.

Obviously, the treatment plan (chemo/radiation) will be determined after surgery.

Again, we just want to thank everyone for all of the prayers and support.We definitely feel the love!
Also, I just have to share this picture...but my 3rd graders did this on the playground. They must have known I needed that yesterday!

Thanks!