Thursday, February 23, 2012

Dr. Apt & Transplant Workup for this week!

Where to even start...this week has been a hectic one so I can only imagine what next week will be like having apt. after apt. day after day!

Monday, 2/20, Cole had his regular chemo apt.  The dr. looked at his ears to check the progression of the ear infection he has had  in the previous weeks and it was gone!!! AMEN!  He got is round of VP16 and did so good this week...no throwing up!!

Mardi Gras holiday came & went...we stayed at home because crowds make me so nervous with him, but I promised him that next year if he is feeling well that we'd go (if though he didn't understand a word I said, lol.)

Wednesaday, 2/22, he had his first part of his transplant workup.  We had to be at the hospital for 8am...so that meant getting up for 6 & as most of you know I'm NOT a morning person and slowly but surely Cole is taking after his Mama!  When we got to the hospital the clinic was empty so we got some one on one time with the nurses and they casually talked to us about the transplant and the hospital stay.  At 830 we went for his dental exam & let me just say that Cole is NOT a fan of the dentist!  He only has 2 bottom teeth, but it's required to get a dental exam so it was short, sweet and to the point!  Cole now uses a big boy toothbrush and he's steadily getting ok with doing it in the morning and at night.  After his dental apt. we met with the Transplant Coordinator, Lisa. She was so unbelievably sweet!!  She gave me some literature to read & I've gotten through a few chapters of Bone Marrow and Blood Stem Cell Transplants: A Guide for Patients & I recommend it for all the parents of transplant patients.  It breaks down the entire process from A-Z.  She also prepared us for the meeting next Wedneday with Dr. Yu (the transplant dr) and said if we have any questions to write them down so we won't forget to ask them...ohhh I have manyyy!!

I just keep replaying in my mind the full weeks we have to come with apt. apt. apt. & procedure procedure procedure & man I'm mentally worn out.  I can only imagine how tired my bug will be after all of this!  I'm trying to keep busy so I won't sit and think about EVERYTHING and over analyze (which I'm terrible about doing).  I don't my mother-in-law yesterday that I mentally knew all of this was going to happen, but to have these dates down in the books was just like a gut shot and now I'm being a worry wart.  I've continuously prayed asking God to give me comfort and strength.  I know everything happens in his time so I can't wait to finally have this AHA feeling that Cole will be completely fine!  I just have this mental picture of a weak pale baby laying in the hospital bed just looking over at me like he just wants it to be over & that breaks my heart.  I'd take this from him in a heart beat if I could.  I'd take EVERTHING from him...the chemo, the procedures all the way down to the hospital stays!

I throughly believe that Cole was meant to be my child for a reason.  Before all of this happened I had an OK relationship with God, but now WOW...God shows me new, powerful things everyday through Cole and I can't thank him enough.  Last night, when I was praying, I literally got giddy thanking God for placing Cole in my life as my son.  I just couldn't express to him enough how blessed I am.  From the waking up in the morning to slobbery kisses to going to bed at night with a bed hog it is such a blessing to be his Mommy.

-Cole's Mommy

You don't raise heroes, you raise sons.  And if you treat them like sons, they'll turn out to be heroes, even if it's just in your own eyes.  ~Walter M. Schirra, Sr.

Tuesday, February 14, 2012

The Transplant Call....

On February 12th we celebrated Cole bugs first birthday!  We had such a great turnout & Cole had a blast!!  I'm so happy we did it when we did because I got a phone call yesterday (2/13) with tonssss of dates to look forward to for the upcoming weeks....

Lisa, the transplant coordinator, called me yesterday and told me that Cole's date of his transplant has been set for April 8th.  I've been daily telling myself that Cole's fine and I'm mentally ready for this transplant, but that phone call was like a gut shot!  I think the rest of our conversation is a fog to me...ahhh I just kept thinking why Cole...why!  I'd stopped saying & wondering that for awhile but now the thought it back...I just don't understand and I honestly don't think I ever will.

She said that he's going to have to have NUMEROUS blood tests plus a psychology exam, dietician meeting, exam by physical therapy and occupational therapy and SOOOO much more...

The list of things I wrote down have overwhelmed me so I can only guess how they're going to make my little man feel!  She also said that a week before his transplant he'll have to take a medicine called Campath.  She that that this medicine is used for a marrow suppresent.  Also, that after he's going to have to wear a mask everywhere he goes...YIKES...i dont even know what to think about that!  I've tried time and time again to put a mask on him, but he ends up throwing up every time from crying so much!

Dr. Prasad has told me that I need to expect moodiness, sores in his mouth, no appetite and restlessness....I just pray it isn't as bad as I'm imagining!

I know that I say this so much, but I can't wrap my head around it.  I just look at Cole & cannot for the life of me understand how he's sick.  I've even contimplated that possibly I did something wrong while I was pregnant, but the drs. have assured me that I didn't, but I still second guess them too!  Cole is so lively and man is he a sweetheart (ALWAYS a smile on that plump little face!) so I guess that's another reason this is so hard to stomach.

God & I had a long talk last night and numerous times today to just comfort me through this and keep him strong, but me too.  I want to stay everyday with Cole in the hospital and I pray with all my might that I don't get sick so I'd have to leave him.  God knows how much I love Cole.  I've never ever loved something or someone like I love him and I just pray that God doesn't take Cole from me.  There I said it...that's my worry...I don't want him gone.  I want, I need him.  I want to be that parent putting up with the attitude from their 16 year old son.  I want to meet his first girlfriend, I want to bring him to his first day of school & cry because my baby will be growing up.  I just pray that we will get to experience all of that!!!

We've come so far that I just can't imagine that he would back track!  He's just blazing through his VP16 & everything else so I'm just staying positive that he will blaze through all of this that is to come!!!

-Cole's Mommy

Isaiah 41:10
So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand

Thursday, February 9, 2012

February 7, 2012 Dr. Apt.

So I want to start off by saying...WHERE HAS MY BABY GONE?!?!  He weighs 22.08 lb. & is 27 1/4 in. long!  That's far from being my 8 lb. 12 oz. baby!

First I want to let everybody know about an enlightening moment that happened to me personally at Cole's apt. on 2/7.  I met a lady (whom I'll refer to as an angel on earth because how could she not be...I bet you'll agree with me once you read this story) & her daughter (who is so strong...stronger than anyone I know!).  This little girl is 5 years old now and is gorgeous as can be.  When she was born she was born with a genetic disease ( I can't recall the name, but just know that it is 100% fatal).  Her mom was the sweetest thing because her daughter had just gone through a transplant so she was giving me the run down on what to expect.  She said that when her daughter was born she had a thumb that wasn't totally formed.  Her doctor recommended to check her for a few diseases that can cause that.  She said she can remember the day that her doctor walked in teary eyed and said I'm sorry your daughter is going to die soon.  She said she just sat in shock for what felt like years.  One thing lead to another and they went to Children's Hospital in New Orleans under the direction of Dr. Yu (which will be Cole's transplant dr.).  She said her daughter started on chemo and had to be masked anywhere she went (which wasn't many places at all).  She said just a week prior to her speaking with me...her daughter was able to go out without a mask...she said their first trip was to McDonalds to go in and have a meal.  She was telling me that she is surprising her daughter with a trip to Chuckie Cheese this weekend...I bet that little girl is going to have the time of her life!  She was telling me that the transplant that her daughter just went through was just a bandaid for her disease.  Without hesitation she said, "But you know what if it gives us 2-3 more years then that's ok!"  WOW....I sat there just in awe of this lady & I am on a daily basis praying for them.  They both have such strength.  Strength I know only our savior can bring.  I know Cole is sick...but Cole's disease can be fixed....her's can't but they just look on the bright side of things and live each day to the fullest.  I refer to this lady as an Angel because she was blessed with a beautiful baby girl who might not make it another year, but she stays with her daily and like I said she makes the best of each day!  When I feel down & out I just remind myself that YES IT CAN ALWAYS ALWAYS ALWAYS be worse!  I really hope that next time Cole has a dr. apt that we can see them again...I'd love to speak more with her because she has blessed me and she doesn't even realise it!

Cole's dr. apt. went well.  Dr. Prasad asked when we were going to do his 1st birthday party (THIS SUNDAY>WOW WHERE HAS THE TIME GONE?!)...when I told her she said to expect a call from the transplant coordinator to discuss when to come in to start setting everything up.  She said he will have to come in daily for awhile to run various tests...but that's ok we can do it! 

He had to get another round of Rocephin while we were there for a lingering ear infection and poor thing threw up twice :(  It breaks my heart to see him sick, but as soon as he would throw up he'd smile ear to ear at me...gosh he's so strong!

Cole was placed in our life, but especially mine for a reason.  I believe with all my heart that God knew what he was doing.  Before Cole came into my life my relationship with God was back & forth, but now...WOW I don't even know what to say....I just can't describe how strong it has become.  Cole has done more in his 10 mo. of life than I have in 22 years & man it feels good to know that I'm his mommy!


-Cole's Mommy

Hebrews 13:2 “Do not forget to entertain strangers, for by so doing some people have entertained angels without knowing it.”