Wednesday, October 27, 2010

The First Day of The Rest of His Life

My son officially has three birthdays, I know special right! That is because he is special. So his 1st "Birthday" is the day of his birth, September 23rd, 2009. His second and equally important "Birthday" is May 11th, 2010, the day his Brain tumor was re sected in a 7 hour surgery. His third "Birthday" and now just as important as number one and two was yesterday October 26th, 2010, the day he received his own stem cells back in his body to boost his very fragile and puny immune system back up. I won't lie, we are probably going to celebrate ALL THREE every year FOREVER, a little much? Maybe but for us they are all milestones that make us unique and show us what a fighter our little Kee is.

So yesterday was DAY 0. At approximately 2 pm EST Keegan's stem cells arrived on the Stem cell unit via a container that somewhat looked like a beer keg. What are stem cells you might ask? Well, the answer to that question can be found HERE. Basically they are the "mother cells" of bone marrow. They help the marrow to make more cells of whatever type are needed. So they arrived in this:


When all the doctors, Nurse Practitioners, Interns and nurses were ready, they took his bag of cells out of the "keg".

They were inside a metal container inside the Keg frozen so they took out the metal case.....
Then she took a moment to show me that they were "HIS" cells,
Then they are placed in a warm water bath to thaw them:

Getting ready to draw the cells up into a large syringe:

The Syringe with thousands of Stem Cells in it:

Next, the Intern had to get ready by putting on sterile gloves (notice Kee is passed out from the Benedryll, Ativan, Tylenol and Dilaudid used to pre-treat him):

Next is the video of the actual push of stem cells into Baby Kee, I will warn you, its not very exciting till the very end when I go "WAHOOOOOO" Cancel that, its gonna have to wait until I have better Internet connection, it just doesn't want to upload....the video itself is pretty unmonumentous besides the actual significance of the event. He slept all the way through it and a lot after it. Occupational Therapy came in shorty after the transplant and wanted to work with him, sure, you can try it but it don't be surprised if he doesn't want to partake......and he didn't so he went back to sleep and pretty much slept till today.

Happy Third "Birth" Day My Baby Kee, Today is the first day of the rest of your life!

Sunday, October 24, 2010

Thirty-One Online Party

Tabatha Starr over at The 3 Starr Life is a Thirty-one consultant and has offered to have an "online party" to benefit us! Is that not awesome! The online catalogue can be see here. Please let me know if you are interested in purchasing something through our online Par-tay! I will send you an invite and all that good stuff! It is in perfect time for the holidays as everything will arrive before Christmas, so get those pocketbooks out (who uses that word anymore!?!?-my grandma maybe (LOVE YOU)! Order up some Thirty-One product to benefit a good cause-Baby Kee!

Love,
B

Saturday, October 23, 2010

I am happy to Announce.....

I am happy to announce (to the tune of "School's Out for Summer")-

CHEMO'S DONE FOR-EVA
(hopefully)

video

Sorry didn't think about orientation of the video at the time...to excited!

Love ya'll,
B

Friday, October 22, 2010

I have a Beef with Something!

Can I just let it out?!? I don't know if you guys can handle it but it's oh so true. Since Keegan was diagnosed I have written a couple of news stations, our local paper at home, The Ellen Show, and Hoda and Kathy Lee. I was trying to get the word out about childhood cancer and/or Brain Cancer is such small babies. It is a growing issue that I feel needs more attention and research.

SO....here is my BEEF (no not the cow) NO.ONE.HAS.WANTED.TO.PICK.UP.THE.STORY! They would rather talk about how many meth labs are busted on a given weekend or how a mother is now in jail for neglect after they found her toddler playing in a home filled with trash and no running water. While some of these things do need attention, I feel that our story (although sad at times, I know) is one of hope. One of an online community and people around the country coming together for the good of our family. We have had such response from people saying they are praying for us, sending us a crib medal, prayer shawl, and other encouraging items. I don't understand our media.

I recently contacted 3 local news stations, 3 national news stations, our newspaper, and 3 radio stations. I need help getting the word out about a fundraiser that dear friends and family are taking the time to put together for us before the holiday season. Its sort of a craft fair and sorta an exhibition for people that sell things like scentsy and pampered chef-it's called Krafting for Keegan and is coming up very soon, November 13th. I have only received 2 responses to date and I did this emailing at the bargaining of the week. Both were from radio stations. Which I am so blessed they even responded but come on people, would it hurt so much to do a story on an inspiring little boy who has known nothing but to fight for his life?

It's okay to do stories about Iraq, flooding, and loss of life due to mass homicides but REALLY come on Media, snap out of it, let's give the people of America a story of substance, a story of real life miracles, and the love of people both near a far.....is that so hard?

RANT OVER.....
Love,
B

Thursday, October 21, 2010

Chemo Shemo

Today marks the half-way point of Keegan's last round of chemotherapy. The last three days he has gotten Carboplatin for 4 hours stints in the afternoon. He has done fairly well with the Carboplatin I don't know if it's because he is also receiving an anti nausea med called Emend along with his normal Zofran or if his little body has learned to tolerate it. We are loving being on the stem cell unit; while we miss our HEMOC nurses immensely, they still come visit since we are just a swinging door away!

On Monday, our first day back, Ry stayed with me to get us checked in and left around noon. I set up the room so I felt a little more at home and I hung fall and Halloween decorations (pics to come). Occupational Therapy came and did their evaluation on him and our favorite Chaplin Rebecca stopped by! It felt good to see familiar faces in a unit we were unfamiliar with. Keegan was in a great mood giggling and laughing for our nurse Rachel (she looks like the Rachel off GLEE too!).

Tuesday passed VERY quickly, which is surprising since I was alone. Usually my time spent alone is long and depressing. We got up, I gave him his meds, THEN EVERYONE decided to visit. Our social worker stopped by, our at home coordinator popped in, so did a music therapy lady to introduce herself, we also had our 2 stem cell docs, Cathleen our Stem Cell coordinator, the Stem Cell NP......I hope I am not leaving anyone out! I gave Kee a bath, sponge of coarse, dressed him and we played for most of the day. OT did come in to have a session with him. They worked on turning pages in board books along with lifting flaps. After a little nap we got up and watched The Wiggles DVD. Keegan sat up, assisted of coarse, and watched the.entire.video! I even tried to get him to lay down but he would not have it!!! He wanted to sit up and watch his movie!

Wednesday was also a great day! He was the same ole giggly, bubbly Keegan. This is great to see although I fear that the vomiting and crankiness is soon to follow. Today was his last day on Carboplatin. We had to get a GFR-what is a GFR you might ask well the answer can be found HERE or I can summarize by telling you that its a test where they inject a "medication" into Kee's central line. There is a blood draw at 1 hour post injection and then 3 hours after the initial injection. These draws determine how well his kidneys are functioning and spitting out the bad chemo drugs. He passed with flying colors so his dosage on the Carboplatin didn't have to change (Thank Goodness-momma is not good with change!). Meanwhile we just hung out in our room, entertaining visitors when they popped in and just having a grand 'ole time! I did find out that Keegan thinks the "Oink" snort of a piggy is absolutely hilarious! It's so funny to see him crack up over it!

Tonight Keegan is getting a new drug called Thiotepa, it can cause lots of problems and this is where the worry wart in me is FREAKING out! Thiotepa can cause sterility, but really, that is not of my concern at the moment, call me inconsiderate. I would rather him have a life and be sterile than no life at all! Thiotepa is also very harsh on the skin. He has to be bathed pretty much every 8 hours or so to keep his skin from being burned and to keep it from turning brown. So the Thiotepa was started at 6:30 pm tonight. He had to be bathed at 8pm and will have to be bathed again at 4 am. Along with bathing we have to change EVERYTHING that touches him i.e. blankets, clothes, leads....well you get it. This is done religiously until Sunday-24 hours have the Thiotepa is finished. After the three hours of Thiotepa (kinda a fun word to say) he gets Etoposide or VP16 for another 3 hours. He has had this drug before just not in IV form. This is one of the drugs that was administered at home and given through apple juice. The IV form is a lot more potent, but these two drugs are a lot of the time given in conjunction with one another.

So Ry is on Keegan duty tonight so I can get a good nights rest. It wears on you sleeping in the hospital for days at time. My body has become accustomed to the uncomfortable purple chair bed thing and people CONSTANTLY coming in the room all night long but; a nice, soft, gushy bed is nice once in a while too! I hope to find a happy baby when I get back over to Kee tomorrow! 

Here is to a couple of bendryll, my eye mask, and LOTS of prayers!

Goodnight ya'll
Beth

PS- I have had a few inquires where to send stuff if people wanted to send letter or encouraging words or such. You can send them to us at the Ronald McDonald House.

That address is:
Ronald McDonald House
c/o Beth & Ryan Chupp Rm 36
435 Limestone Dr
Indianapolis IN 46202-2189

Sunday, October 17, 2010

My letter to Keegan

Dear Bubby Kee:

Tonight, as we sit in our "home away from home", at the CandleWood suites, I am relishing in the last couple of hours of a happy, not sickly baby. I only say this because I am afraid of what is to come. I know how crappy you felt with your "regular" regimen and now we are going and kicking it up a notch. I know what is to come, the vomiting, the crankiness, the sleeping all.day, then the transplant. I have NO earthly idea what to expect after that. They tell me you are going to smell kinda funky for 24-48 hours-this should be interesting. The doctor says you could get sick, very sick, although we hope we avoid this.We are essentially rebuilding your immune system since we are wiping it down to 0.  

Tonight as you lay here between Daddy and I in the King size bed, I am going to try to remember your smell, because we all know that once we enter the hospital you get this odd medical/sterile/chemical smell. I am going to try to remember your giggle, your energy, and how you want and need to TOUCH everything. I know this all sounds terrible and sad, but its weird how life changes once we enter the hospital. Its like life for us just stands still.    

Two months is a very long time. Two months is how long we are going to be living in Indy whether that be in the hospital or for the 2 weeks after you are released at the Ronald McDonald house. Two months brings us to the end of November; most likely the beginning of December. This is a long time for us to be away from our home. Our home with the beds we love, the doggies we love and our family. While they will visit us on days off and weekends it's not the same. Its you and me kid, Daddy is going to try to work Monday, Tuesday and Wednesday and come up either Wednesday night or Thursday morning. This leaves us alone about half the week. I am going to do my best to be strong and be the best mommy I can be! I can guarantee you that!

I know its going to be physically hard on you but this is very emotionally hard on me. I am not going to lie. To watch you go through what you are going to go through is hard enough but then having to deal with being away from home, sleeping in an odd place and trying to "relax" and "rest" is hard. I worry about you. I worry if when you spike that temp, that we know will happen, what is it from? What are they gonna do to find out what is going on in your little body? I love you Keegan, and I know as hard as this is on me it is even more on you. You are the one injected with "poison", you are the one that is delayed when it comes to your gross motor skills and just when we are making MAJOR process I know it frustrates you that we are more than likely going totake a few steps back. I know you are going to have good days and bad. I hope its we have way more good days than bad and before we know it we are on our way home!

I look forward to getting you "free" and heading home to be on isolation for 6 months to a year; at least we will be in our own home! I look forward to getting my Keegan back and healthy! I look forward to your hair growing back!!! I am so excited to see what color and/or texture it will turn out! I am excited to go on our beach vacation next summer and see how you react to sun, sand and water! OHHH and that reminds me I look forward to your central line being removed as well as your g-tube! How could I forget that! You will be able to take a REAL bath which you haven't been able to take since May and you used to LOVE them.  When I look back over this paragraph this is what I am going to put my focus into, instead of being sad and depressed that we are in this crappy situation, think of all the good that is to come!

Tomorrow is a big day for us all! Mommy and Daddy as well as many many many people near and far that love you!  Remember that as you continue to fight, we are all behind you! Go Team Keegan!

Some of our Littlest Team Keegan fans!
Ethan & Vincent


With that Baby Kee, I say goodnight!
Love,
Mommy                                    

Thursday, October 14, 2010

Gracious & Thankful don't seem to suffice.....

We have had SO much love and support from the community, friends, family and complete strangers through our whole ordeal. They have helped us raise money for medical bills, living away from home, supplementing the income I lost when my job terminated me and then was denied unemployment, and even just sending up a prayer daily or every other day for our little family's well being and strength through our hardest days.

I can NEVER begin to thank each and every one of you for what you have done for us. It is absolutely amazing what people do in another's time of need. From fellow bloggers (Joanna at Raising Madison ) or to businesses like Absolute Beauty who helped us tremendously raise quite a bit of money in a little amount of time. There are donors both big and small and even if I might not mention you individually like Nicci who sent me a care package during one of our first hospital stays to a little boy I am about to tell you about. I warms Ry and I's heart like you wouldn't believe. While I try to send each and every one of you a personal thank you note, its not always possible. Between what seems like endless doctors appointments and being on the road to Riley 3 hours one way, I won't lie, its hard!

On to this story of Jack. I received a note from my Aunt a few weeks back that there was this little boy name Jack that took up an interest in our cause. His dad works with my Uncle at Fed Ex and began to follow our story when my uncle took bracelets to work to sell for our benefit. Well we received a package in the mail the other day. It was from Jack. He sent Keegan a Vtech Explore and learn helicopter.
He also included a handwritten card with stickers all over it! I opened it and it brought tears to my eyes. This little boy, who doesn't even "know" Keegan has taken the time and possibly his allowance to buy. It just swelled my heart and made me want to write this post. I did send him a picture thank you card , some bracelets for him, his mom and dad as well as a Karing for Keegan T-shirt and a sticker. Just when you think the world is full of people that only care about themselves and don't think to help people who are down, little things like this happen! Jack if you or your parents are reading this, THANK YOU FROM THE BOTTOM OF OUR HEARTS!

Lastly I want to shout out to some other people who have touched our lives being donating, praying, or being there for general support, we thank you! I won't list them all #1 cause I don't want to leave anyone out and #2 because there are quite a few of you. You know who you are so that is all that matters-THANK YOU!

Wednesday, October 6, 2010

Work-ups for Stem Cell

We got home a little over a week ago now. Nothing too exciting there, except for the fact that they released us from the hospital with an ANC=90 (VERY VERY VERY low). We were shocked but happy to finally go home. It was our shortest stay yet and the most tiresome to date. Go figure!

We had our Pre-stem cell meeting with Kathrine and Dr. Haute. It was fairly simple and complex all at the same time. They went over exactly what will happen during our 4-6 week stay (please pray for my sanity). They told us what to expect and OF COARSE like always they turn morose and have to tell you ALL the bad things that could go wrong, my least favorite part. Nothing too too freaky. We left the hospital the same day we had this meeting so Kathrine said she would give us a call in regards to all the pre-transplant testing we had to have.

During the week mom and I started to bake. The Highway 60 Yard Sale was Saturday October 2nd and my cousin helped us get a Karing for Keegan booth at her church. Many friends helped bake items and make candies to sell at our sale, and even though I don't know some of you-THANK YOU! We also sold our T-shirts (which are still available for $15), bracelets (still available for $2, and our car decals ($3) and managed to make over $500! I think that is pretty darn successful!


On Sunday Ry and I made our way to Indy. Testing was to start EARLY on Monday morning so we wanted to make sure we were fully rested. Monday's tests consisted of a GFR (Kidney Function screen)-the inject his with a certain chemical then he has to have a blood draw 1 hr after its injected and then 2 hours after that. We also had more blood drawn for a CBC and pre transplant blood testing.We then went to X-Ray and had an chest x-ray done to make sure he didn't have pneumonia. We then had an Echo and EKG. We got out earlier than expected. We had time to go back to the hotel, relax and nap. During the afternoon we went over to Greenwood and enjoyed a late lunch or early dinner at The Cheesecake Factory . We then went to Barnes and Nobel. Ryan is in the middle of reading a series of books and needed the second one. While we were there I got talked up by a sales guy to buy a Nook. Not know what a Nook is.....go here.....you may just fall in LOVE! After our HUGE dinner/lunch and shopping at Barnes and Nobel. We headed back to the hotel to relax for our packed Tuesday full of tests and heading home.

On Tuesday we had to arrive by 8 am for our Kidney/Abdominal ultrasound.  After that we headed upstairs to get our blood drawn for more stem cell work up labs. After that we headed to the dentist to grab paperwork to fill out prior to our 12 o'clock appointment and then quickly headed down to radiology to squeeze in a CT of Keegan's sinuses (make sure he doesn't have a sinus infection). Then it was off to his hearing test, which had the exact same results as a couple of weeks ago. After this we headed upstairs to the dentist where Dr. O just looked at his four teeth and said "okay." Really kinda pointless but I guess they needed a baseline. After this was one more test, his developmental testing. Dr. Katzenstein played with Keegan while she asked us what he could and could not do. We also had to do a small test on him. All in all he did better than I thought. He is about in the 8-10 month range of what he can do. I was thinking 6 months so I was very pleased. This goes along with the thinking of my mom who has the thought that he was "reborn" the day the tumor was taken out.

All in all these 2 days of testing were not too bad. They went by quickly but we do have more to come. My mom and I are headed back to Indy Thursday night for an MRI on Friday of his head and spine. This scared the crap out of me, I HATE MRI's. Then my sister and I are headed back to Indy Sunday night for a Spinal Tap and blood work on Monday. Then we should be done.

Round 6 of chemo starts on October 18th, I will go into more detail about that in another post but that is when we move to Indy for 2 months or so.

Keegan is generally feeling better, he vomits every now and then but we can tell he is on the up and up. He is a little more active than he was and it LOVING his new formula that we get to add instant pudding to! We had him weighted and measured on Monday. He is a whopping 24 lbs 4 oz and 29 1/2 inches long. Well that is about all for now....Just wanted to update everyone, THANKS FOR ALL THE SUPPORT!

We LOVE you!