Day 29 update

Well Kaitlyn went to clinic yesterday for her day 29 update (actually it was day 30 but due to the holiday they delayed it 1 day)

Before we left the doctors were throwing around the idea that we could not leave the hospital until her ANC (Absolute Neutraphil Count http://www.medterms.com/script/main/art.asp?articlekey=20030 ) exceeded 500.. However the counts we were seeing ranged from 0 on most days to 14ish on better days.. Because it didn't look like she would hit the 500 mark very soon, the Dr(s) decided to release her when they noticed an upward trend in the counts. The Sat that we were set to go home, a nurse practitioner (more than a nurse but not quite a Dr) stopped by... after Heather mentioned that it looked like we were going home, the Practitioner (based on the old 500 release mark) said wrongly "It doesn't look like you are going home any time soon. 500 is a long way, and unless there is some sort of small "miracle" it is going to be a while..

The 500 mark was soon sorted out and the Dr(s) stood by their statement of letting her go based on an upwards swing, but what we took from that is that Kaitlyn was a decent way from hitting the 500 mark

All that to say,.... Her day 29 results are sent to Jon Hopkins Cancer institute for a test that is basically the only one of it's kind in the US..

BUT

We did recieve her ANC from the blood labs they performed yesterday, and her ANC is 504!!@!@@ we were REALLY EXCITED

Finally home again

Well our second trip to CHOC started 2hrs before mothers day (Sat May 13th @ 10pm) and lasted 15 days..


I was shooting a wedding today when Heather text messaged me "WE ARE GOING HOME RIGHT NOW!!! I was frustrated that I couldn't be there to bring all the Cotter girls home, but to be honest it had little effect on the joy my heart had.

Unfortunately we can not have any visitors for a while.. The reason we were able to come home (in addition to her blood counts coming up a little) was that at least at home we can control the amount of people that Kaitlyn is around. Her immune system is SO low that any little thing can put her into a fever fight mode.. and you all know what happens then.. So we kept telling the doctors that it doesn't make sense. "you want us to be secluded but you are making us stay in a hospital where we have to share a room???".. We were blessed with AWESOME roommates, but there is still that fear of the unknown, and also the statistical risk goes up with the more people that come in contact with her..

Thanks again you all for your prayer and support..

Kaitlyn goes into clinic on Tuesday for her day 29 procedures and tests.. Day 29 will mark the completion of induction and the tests done that day will solidify whether or not she is a rapid or slow responder to the Chemo...


WE will keep you posted

Click to play a movie ;)

Few more pics

 

Few more of kait kait today

 

Kait Kait loves In-N-Out

 

Little update

just a little note..

We are still at CHOC, and it looks like the Dr's want to keep Kait Kait here untill day 29 (Monday May 29th) it is really dificult for heather, but we have been at peace with what ever the Dr's have discussed this far. And another blessiing is that day 29 is also memorial day, so we will be able to leave as a family (it is a holiday for me)

another thing (little miscomunication) Heather was under the impression that the marrow tests had not even 1 cancer cell, but actually she was at 2%. The threshold was 5%, so it doesn't really change anything from a medical treatment.

Your comments here have been such an encouragement. Thank you all for your continued support and prayers

love
~The Cotters

--
via Treo

Kaitlyn's treatment plan

Here is a link for those of you interested in kaitlyn's treatment plan/clinical trial

http://www.acor.org/ped-onc/diseases/ALLtrials/COG0232.html

She is undergoing the DC arm of the trial

A TON of info

Ok first of all I am sorry for not updating you all on Kaitlyn. It has been a whirlwind and she is still in the hospital.

That said I'll explain why she is still there first and then I have some encouraging information.

The thing with chemotherapy is that it blasts the rapidly growing cells in your body, they can't pinpoint cancer cells, but they can narrow it down to only those cells that rapidly multiply (cancer cells generally multiply faster than "normal" cells). Because of this method a lot of "normal" cells get caught in the line of fire. When Kaitlyn came into CHOC she reached a white blood cell count (white cells are responsible for fighting off infection etc..) of around 56,000 (95% of those were bad cells). A normal person has between 4,500-10,000 white cells. Through the chemo process her whites has dropped to around 300 or 0.3k, it is good because the chemo has been killing the bad guys, but a by product is that the body has no way of fighting off anything.

The reason we went into the hospital on Sat was because her fever was spiking. The fever is generally the only outward sign that she might have infection (which the body can not fight in this state) so ultimately they have to preventive treat her as if she had infection as soon as they see the fever, because if they wait the risk is to high. The hospital has a policy that you can not be released for 48hrs after the last fever spike (because infection etc.. can hide in the test results for up to that 48 hr time frame) . Up to this point she has not had a fever for about 24hrs. Unfortunately they will have to keep her a little longer than that rule because she received an antibiotic on Sunday that needs to be monitored in the hospital for a min of 7 days. In regards to infection/fever, they have run TON's of tests on the blood, stool, urine etc.. and they even did a CT scan yesterday (she didn't cry one time thanks to my awesome wife Heather!!) ALL of those tests have come back negative, not showing ANY abnormality!!! Praise and Thanks to GOD for those...

Ok HERE is the MEAT of the story

As I mentioned in previous post(s), with childhood ALL Leukemia, it is usually under 5% in the bone marrow by day 29. The treatment plan of chemo etc is 2.5-3yrs regardless of how soon she responds. If a child has less than 5% blastocysts (bad cells) in the bone marrow by day 15, they are candidates rapid responders, (basically a sign that the chemo is really resonating with her system).

The day 15 bone marrow results came back yesterday (on Maddie's b-day) and they could not find 1 cancer cell in the entire bone marrow sample!!!! so basically she is 0% @ day 15, and if she passes 2 other tests at day 29 she is in the rapid responder group.!!

although they consider the <5% to be "remission"... in childhood Leukemia, the HUGE part isn't getting them in remission, but the entire cleanup process.. so we have won a large battle, but we are still fighting a HUGE war!.. The reason this is such a long process and they do not really use the remission as a goal/milestone, is because of relapse.. If a child relapses the chances of recovery/2nd remission are MUCH lower than the original. So we are basically (after day 29) entering a 2.5-3 year process of chemo that will clean her system out entirely.. Of all the cells in her body, if they leave just one tiny tiny tiny remnant of a cell, it can cause an entire relapse.

OK I typed that in about 5 mins and don't have time to proof it, so I apologize if I rambled, but basically we have won some major battles but we are still smack dab in the middle of the war..

Thanks to all of you for your prayers thoughts and comments on this blog.. They are priceless to us and we treasure them immensely.

Through this whole process, God is good!! He is not safe, but he is good, not because of our results or Kaitlyn's progress, but just for the fact that he is good and he is there. Regardless of where this journey leads and ends, God will be there. He will be the same for good or bad news, He will be just as loving, caring, and mighty if she is healed or not. Our finite understanding of his entire plan, limits our understanding of Him, but we believe in him and all that he has done and will do, for Kaitlyn, us and everyone. Our love for him is not dependant on her progress or positive/negative results.. but we praise Him for every battle we win in his name.

Sincerely
~Daddy

Back to the Hospital

It's 10:00pm Sat night... Heather and Kait Kait just left the house to go to St Josephs Hospital (she can not be admitted directly to CHOC after hours).

She has been running a fever, and with her White Blood cell count being 0.3k she can not really fight infection or bugs so the Oncologist advised that we bring her in for evaluation and "rule-out" of infection..

She will be at the hospital a minimum of 48hrs after the fever goes down.

Going Home

First of all, I am sorry that I am just getting the chance to post some pictures of Kaitlyn going home.. Here they are.. but just an update on the day 8 tests. I'm sorry I didn't update you sooner, but we didn't get the results until yesterday evening.. Her bone marrow after 8 days has 12% blastocytes (bad guys) down from 90ish% that were in the original test 8 days before.

The doctors say that she is still responding well to the treatment and they gave her a "once over" today when Heather and her went to CHOC for the clinic LAB's appointment. They go back Monday for another dose of Chemo and her day 15 tests..

Thank you all again





 

Pics from bath time 2nite

Kaitlyn being silly in the bath
(you can see a little bit of her incision and the bump of her Port)

















Kaitlyn looking at her sister (Madeline) endearingly



















Showing her Fishy bath toy

















Peeking around Maddie's noggin

Madelines "up-do"

























Kaitlyn playing closing her eyes and counting to 10
while mommy hides the fishy toy


















looking for the fishy

Daddy being a dork

First off, I just wanted to share with you a little about our treatment plan. Kaitlyns treatment will consist of chemo on and off for about 2.5-3 years. The Dr's expect that she will loose her hair soon, (we are asking God for mercy on that one, but we will gladly take that in return for the benefits of chemo if need be). This 2.5-3 year plan consists of about 95% outpatient clinic visits.. 1-2 times per week.

Well that said.....



We GOT TO GO HOME TODAY!!@!!!@!@!@


We are still awaiting the results from the day 8 tests (the going home and tests were completely separate) to see from the bone marrow, definitively how she is responding to the chemo (the blood labs they have taken give hints, but the marrow is the real tests) Thanks again to all of you, we are still a LONG way from done and her treatment still comes with the same risks/odds regardless if we are at home or the hospital. Thank you for the continued prayer and support, please don't think this is anywhere near over, just a little bit easier to manage


Another thing to keep in prayer if you can, I start my new job tomorrow. for those of you that don’t know, I accepted a new job about a week before any of this happened, so needles to say I’m a little nervous, wanting to give them my best while my wife is at home taking care of Kaitlyn.

Tomorrow and thanks!

As I said, please remember to pray tomorrow for the “day 8” tests (actually it is day 7 but they are running them tomorrow)
I just wanted to take some time out and share how blessed our family has been through this time.. First of all, our parents, siblings and extended have been an incredible support, thank you all.


We have been humbled that people all over Orange County, the State, and even the entire country (will other countries for that matter) have been touched by Kaitlyn. Not only have we been humbled by their prayers, but the way they have shared the story and this blog to others, I can’t begin to count the tears and prayers from people that do not even know us.. It blows us away.. seriously!! I can not tell you how many emails and conversations we have had where someone has said “well you have people praying for you here”..

Also our house has been basically cleaned and sanitized with a fine tooth comb (ok maybe they used a rake first, but you get the picture), every ounce of laundry has been taken, washed folded and put away, (dry cleaning as well) . We have groups and people pledging dinners for months out. A young marrieds’ group gathered some $$ and bought not only a brand new twin bed for Kaitlyn to rest her little body on when she comes home, but they also donated enough for Maddie to have the exact same bed, (and full bedding as well). The list is endless.. Thank you all.

Thank you to the ones that have been noticed and thank you to all those “little ol’ ladies” (as we refer to them sometimes in the church) praying their hearts out.. Trust me, the impact of all the prayers is felt every day and is evident in Kaitlyns day to day life and her treatmet.

Thank you all


34"Then the King will say to those on his right, 'Come, you who are blessed by my Father; take your inheritance, the kingdom prepared for you since the creation of the world. 35For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, 36I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.'
Matt 25:34-36


Here is where we have practically lived the last 10 days

















and these are the moments you have been praying for



















Thank you all again, and remember Kaitlyn on Monday

a friend of mine also sent me this tonight.. meant a lot to me

a screen shot of his computer background he made

Day 8 tests

it looks like all of Kaitlyns day 8 tests will actually be done tomorrow afternoon. We still might not get the results until Tuesday (the actual day 8) but we just wanted to keep you all updated so you can devote your prayers tomorrow..

Thank you all for your amazing love and support.. God Bless you all

--
via Treo

quick prayer request

please pray for Kaitlyn to not get a fever in the next 2 days. It is a big part of the evaluation.. Also that Heather would remain healthy, she is a little worried that she might be getting a little sick, and we really don't want that to happen right now...

Thanks

--
via Treo

Super C and Dance Class (words from Heather)

I am typing this with tears all over my face as I hear my wife tell me what she has written for me to post..

these are Heather's words

a week ago today I heard words that changed my life forever.... ("she has leukemia")

I was at dance class, we had just had bagels. Kaitlyn begged to have her own "Super C " Smoothie, and to stand on a chair to watch her big sister dance through the window.
I always joked that my life is so boring, I don't have much to talk about...

I would give anything to go back and just do nothing with my girls.

I'm so numb... even in writing this I am not sure how i feel.

but I do know one thing. I will continue to fall at my heavenly father's feet... totally
broken, he will sustain me. he will be my guide. I don't know the future but I do know
that he is there.

2Cor 12:9
But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness."

Sorry I just wanted to post one more..

See that little IV on her arm.....

look in the pics below this one....

ITS GONE!!! FINALLY
(because they think her port finally healed)

Pictures

I wanted to share a few pictures with you all..
You can see why she is our little "Kait Kait"

5 Trust in the LORD with all your heart
and lean not on your own understanding;
6 in all your ways acknowledge him,
and he will make your paths straight.
7 Do not be wise in your own eyes;
fear the LORD and shun evil.
8 This will bring health to your body
and nourishment to your bones.