Friday, March 23, 2012
What a day....
Well Katrina decided to revisit this morning when we had to be at Children's...yuk that was some horrible traffic! Cole had to be at Childrens for 7am (meaning no intake since 1230 last night) and he is JUST being taken to the back for the procedure (it's 1:07 :/). Can you imagine not eating for 12 hours! The surgeon (Dr Valerie) had an emergency case that took 5 hours so that's what delayed us....they gave Cole some "goofy juice" to calm him down some and all hd do was look at me & giggle haha...sweet boy! Daddy came with us today,thankfully, but man this day mAkes for some cranky people, lol.
I've been so overwhelmed lately that last night I broke down & finally just asked Chris " do you think I'll be able to do this?!". He laughed....even though I dont give him enough credit...he keeps me out of the looney bin! :) love you babe!! I just keep thinking how Cole & Chris are going to do being separated during transplant...but absence makes the heart grow fonder I suppose! :)
Coles almost finished with his procedure already 'till next time everyone!
- Coles Mommy
Tuesday, March 20, 2012
WHEW!!!!
WHEW! What a hectic past few weeks...
I want to first say that I have read the most amazing book...it's called 90 Minutest in Heaven. If you haven't read it...go to Walmart NOW! :) It's basically about a preacher on his way home from a conference when he gets in a wreck...he recalls details of heaven (which give me chills) & he recalls family & friends who have passed that he got to see and so forth. Then he wakes up to a man praying and singing and him singing as well..Okay I'm not going to give too much off about it, but man oh man was it good!...definetly a re-reader!! It put a lot of things into perspective...things about Cole's illness & things that I live with everyday.
On to Mr. Cole bug---
Well let's just say that by today, Cole has met just about every specialist that Children's Hospital of New Orleans offers. The "work-up" for his transplant requires this so it makes for a hectic schedule! Let's just put it this way...this is what this week & next consists of....
WHEWW!! & that's just dr. apts. that doesn't include squeezing moving into the process. Yes...moving! We sold our trailer & the new owners will be here to pick it up Monday...holy cow I need more of me (possibly a clone..hmm!)
I'm so stressed...even though I've said this time & time again about everything I truly mean it now more than ever. I'm constantly stopping in mid thought and just praying "God PLEASE give me the courage to face what's the come, the stamina to keep up and the strength to keep moving" and I know as soon as I start talking God knows just what I'm about to say!
I can't make this entry too long because it's getting late and tomorrow is about the only day free to finally move what I can out....I'm hoping to get back on soon, but it might be next week when we're in the hospital before I get another chance!
I love each & every one of you guys & I ask that you please continue to pray for Cole and my family. We have a long hard road facing Cole, but I just know that he's come this far doing as well as he can that I won't believe for one moment that he'll turn back now :)
LOVE YALL!
I want to first say that I have read the most amazing book...it's called 90 Minutest in Heaven. If you haven't read it...go to Walmart NOW! :) It's basically about a preacher on his way home from a conference when he gets in a wreck...he recalls details of heaven (which give me chills) & he recalls family & friends who have passed that he got to see and so forth. Then he wakes up to a man praying and singing and him singing as well..Okay I'm not going to give too much off about it, but man oh man was it good!...definetly a re-reader!! It put a lot of things into perspective...things about Cole's illness & things that I live with everyday.
On to Mr. Cole bug---
Well let's just say that by today, Cole has met just about every specialist that Children's Hospital of New Orleans offers. The "work-up" for his transplant requires this so it makes for a hectic schedule! Let's just put it this way...this is what this week & next consists of....
- Today-Bone Marrow Aspiration in both hips and a spinal tap (sedation)
- Tomorrow-FREEEE!
- Thursday-Blood Transfusion (his count was 8.2 & a count of 8 requires a transfusion)-By the way the transfusion takes about 5 HOURS! :/
- Friday-Placement of new line (sedation)
- Monday-Psychology Evaluation
- Tuesday-Admittance for Campath
- Wed., Thur., Fri.-Campath
- Sat.-Discharge!
WHEWW!! & that's just dr. apts. that doesn't include squeezing moving into the process. Yes...moving! We sold our trailer & the new owners will be here to pick it up Monday...holy cow I need more of me (possibly a clone..hmm!)
I'm so stressed...even though I've said this time & time again about everything I truly mean it now more than ever. I'm constantly stopping in mid thought and just praying "God PLEASE give me the courage to face what's the come, the stamina to keep up and the strength to keep moving" and I know as soon as I start talking God knows just what I'm about to say!
I can't make this entry too long because it's getting late and tomorrow is about the only day free to finally move what I can out....I'm hoping to get back on soon, but it might be next week when we're in the hospital before I get another chance!
I love each & every one of you guys & I ask that you please continue to pray for Cole and my family. We have a long hard road facing Cole, but I just know that he's come this far doing as well as he can that I won't believe for one moment that he'll turn back now :)
LOVE YALL!
Thursday, March 8, 2012
Dr. Apt & Chemo (3/6 & 3/7)
AHHHHHH!!!
ok I'm good...
Where to even begin..let's first talking about this "dr. apt." he had on Tuesday....well we got there that morning & had to go to sedation because Cole had a hearing test, MRI, catscan, xray and all that scheduled. Well the sedation dr. gave Cole Precedex for his hearing test. After the hearing test he started waking up so when he got his MRI/etc. they then gave him Propofol...ok so he had to be sedated twice...yeah twice in one day. At the time, I was ok with it because I knew they had to get these tests, but the more I think about it it aggrivates me! Why 2x? Ya know...it's ridiculous. Then after his tests he had to meet with his dietician then had to go to his Physical Therapy eval. After ALLLLL of this he was suppose to get his VP-16 (chemo), but he was so out of it they said for us to come back the following day. They normally make us stay there until the sleepy medicine wears completely off, but they told us we could go & Lordy be was he grouchy and tired by the time we got home. He went to sleep & slept till 7pm then went back to sleep at 8pm & woke up at 8am. Man...I don't see how he does it. I honestly think my little 11 mo. old is much stronger than I am & I'm a darn adult!
Cole's chemo treatment on Wednesday was bitter sweet. We were told this was his last treatment of VP-16 before he goes in for his transplant. I/We are so use to the schedule of coming and coming to Children's weekly/biweekly for his chemo that it's weird not to be going anymore. I told the nurses that they'll need to come visit me in 4 west while Cole's doing his transplant to keep me sain! LOL...they agreed laughingly!
It seems to surreal to think that in just a few short weeks that Cole will be admitted for his transplant. It felt like this time would never come, but now that it's close I'm terrified. Ok I admitted it..I'm scared...but do you blame me? My hearts telling me God has this Laci just chill, but of course my being the one to overanalyze is going to be a worry wart. I just keep replaying this picture in my mind of a scared lifeless pale little boy just looking at me like WHY ME!?...I pray to God everyday all day to strengthen Cole's body to withstand what is to come & to mentally have me ready for what is to come....
Everytime I have any doubt about his procedure I just turn to look at Cole & either he smiles or does something goofy & he totally distracts me & I'm so thankful for that. I TRULY believe that God knows what he's doing. & I believe that I spiritually & mentally needed to be strengthened and he's doing that by placing Cole in my life. I can't wait for Cole to get older & to show him this blog of step-by-step what he went through to show him how strong he truly is. When he has a weak moment I'll be there to remind him about the journey is endured!!
I feel so overwhelmed. I feel like I have 10,000 things/feelings going through my mind...what's going to happen, how will Cole be, how will I be, how will Chris & our family be, Is our business going to continue to prosper, Are we going to financially be able to do all of this...etc! The list goes on & on about my worries! I just have to lay them at the foot of the cross & know that my Lord & Savior WILL take care of us!
I don't want this blog to turn into me, me, me, I, I, I...but gosh this feels good to vent what I've been holding in! You better believe that I'll be blogging daily in the hospital!!
You know I really wish that my child wouldn't have this horrible disease, but gosh it could be worse. There is a little girl that's Cole's age that also has HLH & she will have to have a liver transplant at some time...WOW...can you imagine! Then I have a cousin...a beautiful, strong cousin that has stage 3 breast cancer....she's so young!, but her faith WILL pull her through this...Calynn we love you soooo much!
I just have to continue to pray & stay strong...that's all we can do!
-Cole's Mommy
“And my God will meet all your needs according to his glorious riches in Christ Jesus.” – Phil 4:19
ok I'm good...
Where to even begin..let's first talking about this "dr. apt." he had on Tuesday....well we got there that morning & had to go to sedation because Cole had a hearing test, MRI, catscan, xray and all that scheduled. Well the sedation dr. gave Cole Precedex for his hearing test. After the hearing test he started waking up so when he got his MRI/etc. they then gave him Propofol...ok so he had to be sedated twice...yeah twice in one day. At the time, I was ok with it because I knew they had to get these tests, but the more I think about it it aggrivates me! Why 2x? Ya know...it's ridiculous. Then after his tests he had to meet with his dietician then had to go to his Physical Therapy eval. After ALLLLL of this he was suppose to get his VP-16 (chemo), but he was so out of it they said for us to come back the following day. They normally make us stay there until the sleepy medicine wears completely off, but they told us we could go & Lordy be was he grouchy and tired by the time we got home. He went to sleep & slept till 7pm then went back to sleep at 8pm & woke up at 8am. Man...I don't see how he does it. I honestly think my little 11 mo. old is much stronger than I am & I'm a darn adult!
Cole's chemo treatment on Wednesday was bitter sweet. We were told this was his last treatment of VP-16 before he goes in for his transplant. I/We are so use to the schedule of coming and coming to Children's weekly/biweekly for his chemo that it's weird not to be going anymore. I told the nurses that they'll need to come visit me in 4 west while Cole's doing his transplant to keep me sain! LOL...they agreed laughingly!
It seems to surreal to think that in just a few short weeks that Cole will be admitted for his transplant. It felt like this time would never come, but now that it's close I'm terrified. Ok I admitted it..I'm scared...but do you blame me? My hearts telling me God has this Laci just chill, but of course my being the one to overanalyze is going to be a worry wart. I just keep replaying this picture in my mind of a scared lifeless pale little boy just looking at me like WHY ME!?...I pray to God everyday all day to strengthen Cole's body to withstand what is to come & to mentally have me ready for what is to come....
Everytime I have any doubt about his procedure I just turn to look at Cole & either he smiles or does something goofy & he totally distracts me & I'm so thankful for that. I TRULY believe that God knows what he's doing. & I believe that I spiritually & mentally needed to be strengthened and he's doing that by placing Cole in my life. I can't wait for Cole to get older & to show him this blog of step-by-step what he went through to show him how strong he truly is. When he has a weak moment I'll be there to remind him about the journey is endured!!
I feel so overwhelmed. I feel like I have 10,000 things/feelings going through my mind...what's going to happen, how will Cole be, how will I be, how will Chris & our family be, Is our business going to continue to prosper, Are we going to financially be able to do all of this...etc! The list goes on & on about my worries! I just have to lay them at the foot of the cross & know that my Lord & Savior WILL take care of us!
I don't want this blog to turn into me, me, me, I, I, I...but gosh this feels good to vent what I've been holding in! You better believe that I'll be blogging daily in the hospital!!
You know I really wish that my child wouldn't have this horrible disease, but gosh it could be worse. There is a little girl that's Cole's age that also has HLH & she will have to have a liver transplant at some time...WOW...can you imagine! Then I have a cousin...a beautiful, strong cousin that has stage 3 breast cancer....she's so young!, but her faith WILL pull her through this...Calynn we love you soooo much!
I just have to continue to pray & stay strong...that's all we can do!
-Cole's Mommy
“And my God will meet all your needs according to his glorious riches in Christ Jesus.” – Phil 4:19
Thursday, March 1, 2012
Apt., Apt., Apt. & Family Conference (2/29)
Where to even begin.....
Yesterday was a day for the books. It started out with an EKG & Eco that Cole was not too happy about, so they couldn't even finish :/. Then we had a 5 hour break then a meeting with Occupational Therapy. They said Cole is on target for his age and even above in some categories! YAY...GO COLE! Then after was the dreaded family conference....
I honestly don't even know where to start...I guess on a good note...I LOVE his transplant doctor. Dr. Yu is so nice & I'm so thankful for that. She started by telling us that his transplant date has been moved to April 9, 2012 intstead of April 8th. She said that Cole will be admitted between 12-3 on the 9th and we'll go to a regular room. They'll then begin looking over his body to make sure there are no rashes, etc. Then around 6-8 that night he will receive a "special bath" to disinfect him. After that he will be brought to his transplant room. During that time, I will be required (since I'm staying with him 24/7) to wear a mask & gloves. Ahhhh...can you imagine sleeping in that stuffy thing...but I'll make do! Also, there will be no running water (ex. toilets, showers, sinks) in his transplant room. They said that can cause bacteria to grow so I will be required to use a shower and bathroom in the hall that all the transplant parents and caregivers use. Also, I cannot eat in the room. Whenever I want to eat, I must go in the hallway or to the kitchen area. UGH this stresses me out, but I know it's for the best. I can see many many days ahead of blogging, reading and crossword puzzles! On April 10th, he'll start a chemo called Fludarabine it'll be given over 30 min. for 5 days. On the fifth day, April 14th, he will also have a chemo medicine called Thiotepa. Then on the 15th he'll have a chemo medicine called Melphalan. Dr. Yu said their main concern for him having Thiotepa and Melphalan is liver problems. It can cause (frequently) blood clots on his liver (VOD of the liver). Wow...to think my child could possibly have blood clots...ughhh I'm so stressed just contemplating that! I'm so scared because "FATAL" was mentioned SOOO many times during this conference. I realise they HAVE to tell us the pros and cons, but hearing it made it oh so real and soooo scary!! On April 16th & 17th he'll have 2 days of rest then on the 18th he'll have his cord blood transfusion which will last about 10-15 minutes. How crazy to think the actual transfusion will be so short! Between days 14 & 42 they'll be looking for engraftment. 1 month post BMT they want 35% cord and 3 months they want 75% cord. 3-5 weeks after BMT they probably will discharge & we'll have to go to the clinic every day. We have the option, because we live close, to come home and travel everyday, but IDK if I want to. They said we could stay at the Ronald McDonald House and I'm thinking we probably will because I don't want to be an hour away and he go down hill or something. I just think about the worst possible thing I guess. I need to stop doing that, but it's so hard to know the things to come for my little man! 100-120 days after BMT he'll be given IVIG and 2 years after the full transplant is about the time they'll say he's cured or not, but his entire life he'll be tested for side effects from the medicine he'll be getting.
This previous paragraph stresses me out even typing it because it makes it seem that real yet again. The entire way home yesterday I just kept praying for strength. I kept telling God how scared I was and I truly am. I'm still scared. I'm scared of the "what if's". You just never know, but I have to trust in the main man up stairs to take care of Cole. Dr. Yu said yesterday that I need to get away some and not stay with Cole all the time.... ummm YEAH RIGHT...I refuse to leave him! I haven't left him yet and I don't plan on it anytime soon!!! Cole has got such a long road ahead of him, but I thank God that he is so young because I really don't think he knows what's going on. He ALWAYS has a smile on his face no matter what...so that helps me to stay strong knowing how strong he is!
Ya'll I can't even begin to explain just how scary this is. I feel like he has to go through so much for being so young and this breaks my heart! I don't want him sick...I don't want him going through all these life threatening procedures....this isn't fair! I keep thinking about all the mommy & daddies that could care less about their child(ren) & they're so healthy...they're so lucky to not have to go through any of this! Even though I say that, I wouldn't change Cole for the world. In my eyes, he's perfect as can be and is my bestfriend!
-Cole's Mommy
You have to accept whatever comes and the only important thing is that you meet it with courage and with the best that you have to give.
- Eleanor Roosevelt
Yesterday was a day for the books. It started out with an EKG & Eco that Cole was not too happy about, so they couldn't even finish :/. Then we had a 5 hour break then a meeting with Occupational Therapy. They said Cole is on target for his age and even above in some categories! YAY...GO COLE! Then after was the dreaded family conference....
I honestly don't even know where to start...I guess on a good note...I LOVE his transplant doctor. Dr. Yu is so nice & I'm so thankful for that. She started by telling us that his transplant date has been moved to April 9, 2012 intstead of April 8th. She said that Cole will be admitted between 12-3 on the 9th and we'll go to a regular room. They'll then begin looking over his body to make sure there are no rashes, etc. Then around 6-8 that night he will receive a "special bath" to disinfect him. After that he will be brought to his transplant room. During that time, I will be required (since I'm staying with him 24/7) to wear a mask & gloves. Ahhhh...can you imagine sleeping in that stuffy thing...but I'll make do! Also, there will be no running water (ex. toilets, showers, sinks) in his transplant room. They said that can cause bacteria to grow so I will be required to use a shower and bathroom in the hall that all the transplant parents and caregivers use. Also, I cannot eat in the room. Whenever I want to eat, I must go in the hallway or to the kitchen area. UGH this stresses me out, but I know it's for the best. I can see many many days ahead of blogging, reading and crossword puzzles! On April 10th, he'll start a chemo called Fludarabine it'll be given over 30 min. for 5 days. On the fifth day, April 14th, he will also have a chemo medicine called Thiotepa. Then on the 15th he'll have a chemo medicine called Melphalan. Dr. Yu said their main concern for him having Thiotepa and Melphalan is liver problems. It can cause (frequently) blood clots on his liver (VOD of the liver). Wow...to think my child could possibly have blood clots...ughhh I'm so stressed just contemplating that! I'm so scared because "FATAL" was mentioned SOOO many times during this conference. I realise they HAVE to tell us the pros and cons, but hearing it made it oh so real and soooo scary!! On April 16th & 17th he'll have 2 days of rest then on the 18th he'll have his cord blood transfusion which will last about 10-15 minutes. How crazy to think the actual transfusion will be so short! Between days 14 & 42 they'll be looking for engraftment. 1 month post BMT they want 35% cord and 3 months they want 75% cord. 3-5 weeks after BMT they probably will discharge & we'll have to go to the clinic every day. We have the option, because we live close, to come home and travel everyday, but IDK if I want to. They said we could stay at the Ronald McDonald House and I'm thinking we probably will because I don't want to be an hour away and he go down hill or something. I just think about the worst possible thing I guess. I need to stop doing that, but it's so hard to know the things to come for my little man! 100-120 days after BMT he'll be given IVIG and 2 years after the full transplant is about the time they'll say he's cured or not, but his entire life he'll be tested for side effects from the medicine he'll be getting.
This previous paragraph stresses me out even typing it because it makes it seem that real yet again. The entire way home yesterday I just kept praying for strength. I kept telling God how scared I was and I truly am. I'm still scared. I'm scared of the "what if's". You just never know, but I have to trust in the main man up stairs to take care of Cole. Dr. Yu said yesterday that I need to get away some and not stay with Cole all the time.... ummm YEAH RIGHT...I refuse to leave him! I haven't left him yet and I don't plan on it anytime soon!!! Cole has got such a long road ahead of him, but I thank God that he is so young because I really don't think he knows what's going on. He ALWAYS has a smile on his face no matter what...so that helps me to stay strong knowing how strong he is!
Ya'll I can't even begin to explain just how scary this is. I feel like he has to go through so much for being so young and this breaks my heart! I don't want him sick...I don't want him going through all these life threatening procedures....this isn't fair! I keep thinking about all the mommy & daddies that could care less about their child(ren) & they're so healthy...they're so lucky to not have to go through any of this! Even though I say that, I wouldn't change Cole for the world. In my eyes, he's perfect as can be and is my bestfriend!
-Cole's Mommy
You have to accept whatever comes and the only important thing is that you meet it with courage and with the best that you have to give.
- Eleanor Roosevelt
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.
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
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.”
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.”
Subscribe to:
Posts (Atom)