The Oak Tree

So Ryan got a card from his co-ed recreational volleyball team on Tuesday before Ryan ever knew what was going on in a conference room on the 5th floor of Riley Hospital, this is what  the card said:

The Oak Tree

A Message of Encouragement

A mighty wind blew night and day.

It stole the oak tree's leaves away.

Then snapped it boughs and pulled its bar

Until the Oak was tired and stark.

But still the oak tree held its ground

While other trees fell all around.

The wear wind gave up and spoke,

"How can you still be standing, Oak?

The oak tree said, "I know that you

Can break every branch of mine in two,

Carry every leaf away,

Shake my limbs, and make me sway.

But I have roots stretched in the earth,

Growing stronger since my birth.

You'll never touch them, for you see,

They are the deepest part of me.

Until Today, I wasn't sure

Of just how much I could endure.

But now I've found with thanks to you,

I'm stronger than I ever knew.

Miracles Happen Everyday.....Right?

Monday was a pretty uneventful day, we just sat around and DID NOTHING. We played a bit, mommy started the previous blog entry and OT came in. That was until Dr. Shiy came in and told us we were going to get an MRI the next day. He wanted one to see where we were at, I began freaking out OF COARSE, because well, that is just me. I can't help it, its in my blood, I get it from my father. So the rest of the day I began worrying about the next day's MRI. Ry is home still getting a couple of days of work in so I am by myself worrying like its going out of style. 

The evening got a little better, I ordered some pizza for myself and tried to relax a little. Julie was our nurse again, I absolutely LOVE her. She is great with Keegan and we have A LOT in common. She livened up the mood a little and we talked about different stuff, I am definitely a talker when I am nervous! When the sun began to set I did capture some really great pictures of Keegan.

Tuesday came, what turns out to be the 2nd worst day in my entire life.  He was NPO past 6 am so by the time the called him to come downstairs for his MRI he was starving at not happy. I signed my consent, kissed my baby and left him in doctors hands.  Two hours later he was brought back to me but screaming a scream that makes my blood boil. I knew he was in pain. I quickly asked for some pain meds, which or nurse got but then I saw the social worker.......

She came into the room and asked me to join her and our oncologist in the conference room ( I knew it wasn't good).  Sally a nurse from clinic joined us. I sat down (alone, Ry at that point is on his wait to Indy which is 3 hours from home) and everyone sat around me. I looked a Dr. Shiy and said it isn't good is it? and he said, no its not.

I couldn't believe the words that just came out of his mouth, we ALL thought the MRI would show progress, if not a ton, enough to show us we are moving in the right direction. The rest of the meeting is a blur of diagnostic talk, possible treatment options and me repeating "oh my god and Okay" multiple times.

Basically, and I was waiting until all close family was notified to share with my bloggy and interweb friends (not that you guys don't matter I just didn't want family to read this via the Internet).

These words are still hard for me to say out loud and bring tears to my eyes but here it goes ::Big Gulp::

KEEGAN'S TUMOR IS BACK; IT GREW THROUGH THE WORST POSSIBLE CHEMOTHERAPY TREATMENT OUT THERE FOR CHILDREN!

Omigosh, how could that be-I am sure that is what you are thinking, and honestly we are still trying to figure it out. No one knows. We have some options, not to cure him-because at this point that is not possible-but to prolong his life with quality time and love.  I am not going to elaborate on options, these are for Ry and I to mull through and decide, plus we are waiting to hear back from St. Jude's, Boston's and CHOP.

I am a loss for words, I feel like only a miracle can save our baby now. Yes we can try to prolong his life, should we I don't know, am I ready to give up HELL NO! So right now my motto is : Miracles happen everyday!

Oh where oh where have Keegan's updates gone?

Where are the updates of Keegan's third round of chemo you may ask......well, Momma took a much need break (thanks to a wonderful brother-in-law and sister-in-law who came to stay with Keegan on Saturday). On Saturday July 24th my middle sister Mary Ellen got married, and not only did she get married, but we basically partied like rock stars-or at least I did! I let my hair down and had a good 'ole time! In a way I felt bad because my baby was lieing up in a hospital bed finishing chemo but it was nice to get out and dance the night away and have F-U-N! So first thing is first, the wedding and all its preparation:

It was a wonderful wedding and reception, so glad she married a great man with a great family, I gained two new sisters who are WONDERFUL!

NOW I know you have all been waiting for some Keegan updates.....here is the past couple of days in a nutshell......

Thursday: I left late morning on Thursday to head home to help with the wedding preparation and pampering. We weren't even home yet when Ry called to tell me Jeff Gordon was on the Oncology unit visiting patients down in the playroom he donated. He said Keegan had a really bad diaper rash, first one yet, and was fast asleep, he didn't know if he was going to disturb him for Jeff Gordon.....

AND...he didn't. But Ry did peek out and say hi to him. He stopped taking bottles orally on Thursday and felt pretty crummy from what Daddy said. He would perk up at times but generally felt lousy. Thursday night he got his last drug on this chemo cycle-High Dose Methotrexate. The WORST one. I felt bad for not being there but he was in great hands with his dad ( I did bug him alot with TONS of phone calls, but what mom wouldn't?)

Friday: We were still battling the Diaper Rash from Hell and now the after effects of the Methotrexate. He got Lecovorin every 6 hours to help get rid of the "Meth" and Ry said he had some good spells where he was a really happy camper.

Saturday: Daddy got up and as soon as Aunt Erica and Uncle Steve came headed to Evansville. Ry would call and check in every so often to make sure he was okay. He started to get vomity but that is what chemo does to ya. Both Steve and Erica said he did exceptionally well other than sleeping Saturday night into Sunday. Which brings me to Sunday....

Sunday: I got to the hospital around 2ish. My aunt\, uncle and Nana brought me here so Ry could stay home and get a couple of days of work in. When I got here this is what was written on the dry wall board:

Erica and Steve had documented EVERYTHING for us. It was awesome, I knew what happened when....I know you like the flowers I strategically placed on the board (its to hide our phone numbers from creeps). He did clear the Methotrexate on Sunday so they stopped the Lecovorin and he had a TON of visitors on Sunday including my Aunt and Uncle, my Nana, my dad and step mom and my step sister.

So anyway he has been doing relatively well since I got back, he has been vomiting or heaving a couple times a day, his numbers haven't dropped all the way yet so we are waiting ever so patiently for that so we can start antibiotics. Hopefully we will be out of here by August 1st.....I hope!

Round 3: Day 1

So last night, Tuesday July 20th was officially Day 1, Day 0 being on Monday night. It's really weird how they do that, I don't quesiton it I just go along with it. He was in a great mood all day! Playing with all of his toys and just enjoying himself.

Mid afternoon one of our good friends from Speech Therapy came up to let us know that she tought it was safe to try some solids again. Keegan has not had solids prior to his hospital stay in May. During his last swallow study he aspirated on eveything but a bottle with rice ceral in it.

When the therapist gave us the okay ,we immediatly went down to the playroom and snatched up a highchair to use. We started off with squash....not too thrilled,I think its gonna take him awhile to get used to solids again-which bums me out-We had gotten so far! The stint in the highchair quickly turned into play time when we found out he wasn't that hungry but boy did he want to play.....

We got a call late afternoon that we had a room at RMH, THANK GOODNESS! We only had to spend one night in the parent lounge! Around 7ish a surgeon came in the room and let us know that yes, our request to have a button placed in Keegan's belly instead of the big ole G-Tube was to be granted the next day. I am so excited, we won't have a large protrusion in his clothes anymore and one less thing for him to tug and pull at.

Chemo time is 9 pm sharp.......Etoposide, Cyclophosphamide, and Mesna were started. Same drugs, same routine as round 1. Etoposide and Cyclophosphamide being the chemo and mesna being the bladder protectant from the harsh chemicals.

Ryan stayed the night with him while I went to RMH took a Luensta and went to night night land. Ry said he slept fairly well (as compared to home where he seems to be waking up twice a night with night terrors.)

On to Day 2 with a vengence!

Ding Ding Ding......Round Three

Round three is officially underway. It started about 15 till 9 last night July 19th. An exact replica of Round One, Round 3 is a little less scary because we have an "idea" of what is going to happen, but still scary because we have no "idea" of what is going to happen. Our doctors have told us that it is going to take longer for him to rebound this time then the previous times. We have to watch urine and stool output as well as monitor his nutrition. So far so good but we only have night one of five nights down.

I can say he if full of it today. We went down to the playroom and brought him back a Little Tykes piano that he has been banging vigorously on for the last couple of hours. He loves ANYTHING that makes noise right now. A few months back I bought him some of those little rings that attach together that he can chomp on for teething, I got those out before we left home and Keeg feel in love.

He is still eating like a champ, no vomit YET. I anticipate vomiting will start tomorrow. He is on IV fluids which tend to make him very puffy, especially the side on which he lays. Oh yea and he has managed to pee on me not once, not twice but three lucky times since we checked in last night! He NEVER does this to me! I don't know if it's the way the air blows on him or what but it has to STOP, I am changing sheets almost every time I change  diaper!

I am including a video today of the little piano man, its so fun to see him finally interested in toy!

Video to come, the site I used was crappy and deleted it on me!

A Day in the Life

I thought it might interest some of my readers how I manage and get through an average day. Some days are much easier than others but some are down right hellish. This "entry" is going to be about home, our precious home that we very much enjoy spending long days and summer nights swinging on the front porch swing.

Ry's alarm for work goes off around 6:15 but that is not before Keegan wakes up screaming between 12-1 and 4-5. He started to sleep through the night around 2 months but being in and out of the hospital has really messed up his schedule and ours. It is a blessing in disguise though because he is supposed to get so many calories/ounces a day and without the midnight feedings I am pretty sure we wouldn't get in the required amounts.

So Kee and I usually try to sleep till around 7:30 at which time I get up go to this cabinet in my kitchen:

His 8 o'clock meds are his Keppra, Nexium and Fluconazol. Keppra is his anti-seizure, Nexium is for the irritation in his lower GI, and the Fluconazol is an anti fungal. I give all meds through his G-Tube in his belly

The morning is spent on the couch, since Keegan is not sitting yet we usually work on sitting up and head control. Most of the time he squeezes a small nap in in the 10 o'clock hour but not always! Daddy comes home for lunch around 11:30 or so, as long as its not fish taco Friday at Taco Tiera! Playtime then ensues and grandma comes home for lunch as well. Mommy is able to do some laundry and get bottles ready for the afternoon.

The afternoon is spent much of the way the morning is, we sometimes watch an episode or two of the Backyardagains. He LOVES them! I think its the bright colors and the singing but he will just stare at he TV and smile. Around 3:00 I have an alarm set to go off to remind me to take his GCSF out of the Fridge and to give him 1.75 ML of Zofran so he does not get sick from the GCSF (GCSF or Filgrastim helps his bone marrow recover and his counts to come back up to start another round of chemo).

Around 4 o'clock the GCSF process beings. I absolutely HATE it because I know it makes him feel like poo but on the other hand it helps his count rebound much quicker than leaving it alone to do on its own and risking infection. Its a double edge sword, it really is. So here is the process:

Step 1:  Get supplies Together

Step 2:  Drawing up the 2.5 ML of Heparin for the flush after the GCSF

                                           

Step 3:  Drawing up (2) 5 ML Syringes of D5W

Step 4: Putting Syringe on Pump to get going...

Step 5: Flushed Kee's line with 5 ML of D5W then attached Keegan to the drugs/pump

Step 6: All hooked up and ready for an hour and a half long infusion

After the infusion is done, he gets another 5 ML flush of D5W then a flush of 2.5 ML of Heparin. Total time for preparation and infusion is about 2 hours give or take. There have been days when I have to rearrange my schedule so I am home to do the procedure, I am sure my mom or Ry could do it but I was trained by the nurse in the beginning and I am very anal on the sterility of the process. But arranging my schedule is nothing compared to betting my baby better!

Daddy is usually home by the time the infusion is done and my mom is soon to follow. We all take turns making dinner and doing dishes. Kee gets fed, more meds are given around 8 pm, same as the morning minus the Fluconazole. Kee's bedtime is approximately 9 pm (give or take). We bought this futon type couch thing that folds out to basically a full size bed that we have moved into Keegan's room. We sleep right next to him, while my mom sleeps in the extra bedroom and my sister Abby sleeps in our bed. It just worked out better that way!

Anyway that is the day in the life of my little family! Nothing too exciting but if anyone else is going through this you know how tedious some of the procedures can be!

Love to All,

Happy Birthday to Me!!

Happy Birthday to me, Happy Birthday to me, Happy Birthday to meeeee, Happy Birthday to me! So today I turned the big 29! As my bestest friend from child hood texted me this morning, "HAPPY BIRTHDAY!!! Enjoy it! This is our last year as 20-somethings!!! Sigh....." So this year I knew it wasn't going to be very monumental being we had to go to Riley and check in for Round 3 of chemo but I didn't expect my family to sneek behind my back 2 weeks before my birthday and pulls some shenanigans!

For my Birthday my mom, sister Abby and my sister Mary Ellen had the idea to have Jessi Briner of Bee Elle Photography come to our house and take Keegan's 9 month pictures. See I had an appointment to get his pictures taken at Penny's but canceled because I didn't think he would feel up to it and that we would for sure be home. But my family sent us for a night of pampering for mother's/father's day and little did we know they had Jessi over at our house taking the most wonderful pictures of Keegan I have EVER seen.

Well, with no further adeu I present Keegan and his 9 Month Pictures......

I want to Thank Jessi for all her hard work! The pics are GREAT and I didn't even post half of them! Oh and by the way do YOU have your TEAM KEEGAN SHIRT OR BRACELETS? Just askin' :)

A New Face!

So the blog is updated you like? I LOVE it! Jocelyn at Blogs By Jocelyn did the makeover for me since Nicci over at Changing the Universe donated the update that she won from Joanna's giveaway/donation collection for us!

Anyway so first thing was first, I had to pick out a kit. I asked Jocelyn's advice and she asked me to look at 3 kits and see if I liked any, right off the bat I loved this kit, it just screamed boy and was pretty simple and light ( I didn't want it dark and dreary like my last one). She worked her magic and VOILA, here is the final product, minus some little things she will be working on later! Do you like? I LOVE IT! I highly recommend her to anyone looking at updating or starting their blog off right.

The funny part to this whole story (and I didn't realize it till this morning when my sister pulled it up and we were talking about it) is that my Great Grandmother O'Melia use to collect elephants, when she passed away is 1997 we each got a couple of elephants to remind us of her. One of the elephants I chose had a little card attached that said when an elephants trunk is up it means good luck! Coincidence? I think not! I am thinking this means good things for our future-heck we could definitely use it!

Just to remind you how cute he is!

Motivation

I am having a lack of motivation making and coming up with a blog post. I don't know if I am in a funk or I feel I have nothing pertinent to share with all the interweb. It really frustrates me  because I know you guys want to know more of what is going on but how much more? I am a a fine line of what to share and what not to share. I don't want to gross everyone out and tell you some of the absolute worst things I have seen since my baby has started chemo but (as you probably know) I don't really like to sugar coat things either.

This week is pretty lame. Keegan and I are hanging at home all week relaxing and enjoying not being in the hospital-NEWS WORTHY, I know! But that is about it besides finishing up all the stuff we have yet to do for my little sister's wedding on July 24th.

Sorry for the slump, maybe I should just take all my medication as directed-HAHA!

Big Fat UGHHHH!

Gargantuan THUMBS DOWN to my former employer and what they have done. They along with the unemployment office have denied my unemployment claim! I am so frustrated I could spit fire! I really want to know how a company can expect you to return to work with a child fighting cancer; a 9 month old at that! I just needed to vent-I am going to appeal this denial OF COARSE but I only have until July 12th to do so. So with the fact that I am in Indy currently, its a holiday weekend and we are looking at being in hospital longer than originally thought because it took to darn long to get a room, I have to hurry my butt up as soon as we get home and get my appeal together. Wish me luck and pray that I can win this fight, like I really needed something else on my plate; I mean REALLY!

Exciting News

and NO  I am not pregnant again (yet)! You remember Joanna over at Raising Madison hosted a shin dig for us and our cause. She gave away some super neat stuff including a blog makeover, shutterfly gift card, and some invitations Fine Prints Etsy Shop. All the winners of these prizes including Nicci over at Changing the Universe donated their winnings to me! So I am very excited to working with Jocelyn @ Blogs By Jocelyn to create a new and even more unique look for our little corner of the interweb. So be on the lookout for an updated version of Karing 4 Keegan. I am sure it's gonna look great!

Day of Silence for Baby Cohen