It's Not "Goodbye", It's "I'll "See ya later"

I have a hard time with saying goodbye. I have never been good at it and you would think I would have after years of being moved around the country as a child. But NOPE nothing has ever changed, my heart still aches, tears flow, and there is a void I feel with never be replaced.

Well my friends, there is a time and place for everything and tomorrow our time has come to leave the fifth floor stem cell unit and try to transition back to "normal" life; whatever that entails. But with all this joy and excitement of the good things to come there come heartache.

We have had EXCEPTIONAL nurses during all of our stays at Riley, but this round was a little different. Since we were "in house" for a little over 6 weeks, I have gotten to know the nurses, doctors and housekeeping on a first name basis and consider MANY of them my friends. That is why today and tomorrow have been exceptionally difficult. I told nurse J tonight, "I can't do Goodbyes, I will cry but I can do "I'll see ya later" so we briefly hugged because well, I knew if we embraced too long I would get teary eyed. So as she walked out of our room, It was "See ya later!".

It became a little bit harder when our housekeeper friend JR came in to say "goodbye." I told him I couldn't do it. It had to be "see ya later", he made some smart remark about Keegan's face and how bad it looked and I came back with one of my smart lines about him working (or lack there of) and we hugged. That is when the tears started flowing and I began to think about all the people that I see every.single.day that I am going to miss dearly.

These nurses, doctors and housekeeping staff have been much of our support during this long, long hospital stay. They have gotten to know us and we them. They are like family. They have cared for Keegan like any mom would and truly want what is best for him. They adore his smile, his giggle and the way he likes to suck on his glow toe. They know how I dog on myself all the time for my weight, some know stories about my past and other I have taught a little about who we are and what our hopes and fears are.

I have much respect for all these people, I could NEVER do what they do. They can and do get attached to families only to see them here and gone within a few weeks or months. Like I said, I am not good with goodbyes. I have added a lot of these people to my face book or communicate via text daily. They are my friends, I am confident in saying that and it is NEVER easy to leave a good friend.

People come in and out of all of our lives for a reason, that is a fact. Some come to help you see things clearer, some to lend a hand during a hard time, and some because I believe destiny/fate made it so. These "friends" of mine at Riley have helped to make our journey with Cancer easier. They have let me cry on their shoulder and go out to a random dinner at PF Chang's (JS), they have let me vent about bad interns(H), we have joked about Jeff Gordon(JR), picked up Starbucks for me on the way into work so I had decent coffee (RR), talked about life in general and how we think we were separated at birth (MP). I am going to miss all of you even if I didn't mention you above!

So tonight my Riley friends, as I lay my head down on my all to uncomfortable cot, and as Keegan snoozes away in his hospital bed to the glow of the hallway light know that each.one.of. you has touched not only me but my family. You have made a very big difference in our life. We love you and always will. I hope to keep in contact with all of you and visit when we come up for clinic appointments. You are hands down the best group of people I have had the pleasure of knowing and taking care of my child.

So tonight friends, it's not "Goodbye". Tonight is "I'll see ya later" because in the words of Richard Bach:

Don't be dismayed by good-byes. A farewell is necessary before you can meet again. And meeting again, after moments or lifetimes, is certain for those who are friends.

 

Love,

Beth

a.k.a the wacky mom is Room 5162B

It's Good to Be Back

Today is one of those days, those days that you are very grateful for. I never thought I would say that about returning to the HEMOC floor of Riley Hospital, but yes, it does feel good to be back.

We checked in around 11 am in the outpatient center where we waited for about 4 hours to get fluids and our room had to be cleaned. Then we were hustled up to our home away from home, the fifth floor Cancer and Oncology Center.

Walking back through the double doors onto the unit felt good, I won't lie! Just a mere month ago our prognosis was terminal and our chemotherapy was stopped with pallative radiation being our only way to keep Keegan around longer. But tonight here I am, blogging from Room 26, our little corner room with a view that we have been in 3 times before.

There is something about returning to this place and seeing all the familar faces, hearing all the familar sounds and yes even sleeping on the same horribly Barney Dinosaur Purple chair bed that makes me feel at home. Weird I know, but when you think you have said your goodbye's to staff and fellow patients and their families, it's good to return and tell them the great news.

I applogize for my hiatus from blogging, between our big Rummage Sale that was had in our honor and the baked sale, chinese auction, and cookout we had this past weekend, there was not much time for blogging. Besides that I just want to cherish the great news with my family and my little boy!

We also had familiy pictures taken by the WONDERFUL Jessi Briner of Bee Elle Photography last night. From the couple of pictures I have seen that have been edited I am WAY excited, check this out:

Awesome Right?!?!? Anyway, I am gonna get back to my baby, he is about to start his IV chemo and I am STARVING!

I will update soon, I pinky promise! 

Busy Days and Busy Nights!

Since my last post it seems I can't get a spare minute to sit down and write an "update" post. One of the problems could be that I am A.D.D.I.C.T.E.D to Nip/Tuck. In 3 short weeks I have spent all my "spare" time watching Seasons 1, 2 and am currently on 3-I LOVE it, it is my getaway! Or it could be because I am out and about shopping with my sister trying to help her find a white dress or cute white tank for our family pictures that Bee Elle Photography  is going to take....so any who I apologize for the lack in posts, we are enjoying our time at home and LOVE being able to take Keegan out mask less, he likes it so much more!

I meant for this to be an update post, of everything that has happened since the last post BUT instead I have decided that I need to reach out and once again ask ALL my friend, family, and people that LOVE us but have no idea who we are to pray. I ask that if you pray, you pray with every.single.ounce.of.your.being.

Tomorrow is D Day, or should it be M Day....we are having our 2nd MRI tomorrow to decide for sure, 100% without.a.doubt that what is in his brain is tumor and nothing else. They are using the original MRI machine that was used during the original brain tumor diagnosis to compare clean, clear images; why they didn't do this this past time I don't know. They will also be performing a perfusion scan and a fiesta scan to check as to what the tumor is made of and the blood supply (if it really is a tumor). My prayer, and the prayer I hope you all pray for us today and tomorrow, is that what they saw almost a month ago now on his MRI image was just "something" else, not tumor at all. 

We will arrive at Riley to check into same day surgery around 10:30 am Indy time, from there we wait until 12 when he is taken back for an hour and half MRI sedated of coarse, and then we see the Oncologist; but don't know whether he will be able to give us results or not.

I know I ask a lot of my readers sometimes, and I understand if you don't pray and aren't religious, but I am praying, and I am religious, and I want God to intervene and perform his miracle now more than ever-are you with me?

When is it our turn?

We have no right to ask when sorrow comes, "Why did this happen to me?" unless we ask the same question for every moment of happiness that comes our way. ~Author Unknown

We have always kind of known there was something different about Keegan, from the moment I first saw him in the NICU I knew he didnt "look" like other babies. I think we tried to tell ourselves that it was just a bunch of little "coincidences" that all happened to him, but as the weeks have drawn on we have come to the realization that is not so.  Let me skip back in time for just a moment:

October 9, 2009 we headed north to Riley's Childrens Hospital in Indianapolis. We thought we were just going for a follow up for a few minor things he had when he was born: larger than normal head and weight, in uterine stroke, and multiple digits. All of our tests and reports had been forward to the Neurogenetic Clinic. When we got there we spoke with a neurogenetic counselor for awhile. She asked us all sorts of questions about our prenancy, our famiy histories and about this precious 2 and half week old that we were just begining to form a relationship with. He had only been out of the NICU 3 days when all this started to happen.  After Abby, our counselour was done, Dr. Walsh came in a did a physical evlauation of Keegan. We really had no idea what he was doing and quite frankly we were scared as hell!  All the while, Dr. Walsh started to talk about a genetic syndrome called Simpson-Golobi-Behmel. He has a few of the more prominent markers for it including a larger than normal head circumfrence, he was larger than normal (especially for a premie) at birth, his eyes are a little wider spaced than most babies, and his nose bridge is flatter than normal.  Dr. Walsh explained to us that he suspected Keegan of having this overgrowth syndrome and that there really wasn't a test for it.  We left there feeling more empowered than we had thus far, the NICU doctors really didn't help us a whole lot, they performed every test under the sun but we never really got concrete answers.

Fast Forward 6 weeks. On Monda November 23rd, 2009 we had a follow up appointment in Dr. Walsh's office up a Riley.  We were seen by a Nurse Practioner named Sara. She asked us some of the same questions asked last time, more questions about his developement-what he was able to do and what he wasnt, and about his general well being. She did some tests on his ablitiy to hold up his own head and took a look as his naked, and might I add cold, little body. She was worried about the lag with his head when pulled from a laying down position. She suggested we call First Steps of Indiana down in Vanderburgh County when we got home. She was also worried about the vary large soft spot that was still open in the back of his head and a hernia that has developed around his belly button, both of which will need surgery if they don't clear up. She wanted a follow up CT of his head and an ulstrasound of his belly done when we got home. After the appointment she sent us down to the lab to have his blood drawn, at the time we had no clue what they were drawing his blood for.

We got home that evening and felt pretty good about our trip. Nothing that can't be handled. I called First Steps of Indiana the next day and scheduled a meeting for Wednesday December 2nd for an intial consultation. The rest of the week flew by pretty fast. Some of my family and some of Ryan's family came in town for Thanksgiving and we had the meal for around 20 people at our little 1200 sq foot home! It was a blast though and Keegan got to meet some of his Great Aunts and Uncles and his Great Nana.

The first week of December started pretty uneventful. Keegan went to Amanda, hosue for the first time and got to know Ella and Jamison, her two little ones. By Wednesday I was ready for the weekend. I left work around 10:45 am to head to the First Steps office. When I got in my car I checked my phone for missed calls. Sure enough I had missed one and had a voicemail waiting for me.  After listening to the message, I placed a call to Riley right away to talk to Sara, our nurse practioner.  She had gotten his blood results back. It turns out Keegan as measuring in a critical area for the AFP test (a test for tumors).  She asked me when our CT and ultrasound were scheduled. I let her know it was scheduled for first thing on Friday. She said she would do her best to obtain those results quickly and let us know what they said. She proceeded to tell me not to be too alarmed although she probably would be if she was me.  I replied, "yea I am kind of freaking out!" - Which by the way I was! 

The First Steps meeting went very well. She gathered information about our little family and the obstables facing Keegan. She then shared her own personal story with me about her two boys that were born with genetic syndrome. Although it didn't keep me from being scared sh!tless, it did help me realize that even though this a mere bump in the road, we will get through this. 

After the meeting I phoned Ryan at work and shared the bad news with him. He got just as upset as I was but assured me that everything would be okay. I then called my mom, dad and sister in law Toni.  Everyone shared their sorrow and told me to keep my head up, we have not had our CT yet.  I got back to the office and no sooner did I get in the door than I started bawling again and ran to Laura (my bff in the entire world) and began to cry harder. Why did my little man have to go through this? What did we do that should have been done differenlty? It is still hard for me to wrap my head around......

The next 2 days are a complete blur. I didnt eat much and really didnt smile much. It is hard enough to raise a child in today's society but I was and am completely scared of raising a special needs child. On Friday morning December 4th we loaded our little starving man in the car and drove to Midwest Radiologic Imaging. We waited for what seems like hours, although with a screaming and very hungry 2 month old it would have felt like forever regardless of where we were. He had his CT done first and Ry got to stay in the room with him. Ryan said he fell asleep in the little holder.  We then went across the building to where they perform the ultrasounds.  It was then another 30 minute wait. When we finally got called back to the room we were very anxious. I was scared to death a tumor would just pop right up on ultrasound and we would be admited to the hospital right away. But that is not how it happened. Ry help Keegans arms and keep his Glow worm glowing and singing the lullabies while I rubbed his little legs and feet to keep him calm.  He did very well and the tech was able to get all the measurments and things she needed. I did have to tell her about the 2nd gallbladder that he was diagnosed with in Utero and she commented that she didnt see it.

The next couple of hours seemed to drag. I knew Sara would be calling that afternoon so I was just waiting to here "All I want for Chrimstas is you" by Mariah Carey, its my current Unidentifed caller ringtone :) Around 1-1:30 she finally called. She said they didn't see any tumors and that she was going to take it over to gastrointerology to have them take a closer look and that it would either be late Friday or Monday before she got back to me. We did have a brief discussion about how her and Dr. Walsh are pretty confident we are dealing with Simpson-Golobi-Behmel and that we should find a good Peditirian. Although I had been thinking htis in my mind, her confirming the SGB made it more real.

So here I am on Sunday December 6th holding my breath and praying for whatever reason that the markers for his tumors are just an error. Hopefully she will call me Monday morning and let us know the next step, I think we are both more okay with this now, we have given it a chance to sink in. We have a great family to turn to for support and I am reaching out to others who have special needs children or those that have children diagnosed with SGBS. There is a little boy in Texas by the name of Jackson whom has SGBS. Since it is such a rare syndrome I am not finding a lot of support groups or people to befriend. I have faith though that we will get through this and although I ask my self  "when is it our turn to have something good happen?" I know that Keegan is that something good, he was sent to us for a reason and we will always love him!