thursday, December 3, 2009

ok so I will apologize right away for not updating this in so long.I am sorry. Anyway things are going really well. We have settled into a somewhat ordinary life, other than meds every day & trips to CHOP. Tucker is growing by leaps & bounds & is just developing such a personality. He is the happyiest baby ever. He wakes up every day smiling. He is cooing, & talking up a storm. He plays w/ his toys, & loves attention. We are still working on tummy time, but every day gets better.
As far as his recovery, he is doing fantastic!!! His ounts are all back to normal, we are just waiting to see T-cells, which are basically the backbone of your immune system. Our next appt they will be doing a complete immune test workup on him, so we will know more then. he is starting to catch up w/ his weight. he is also catching up developementally. He is just a little behind as far as the strength of his neck, but he is really getting stronger every day.
We feel so blessed to have such a special baby!!

Tuesday October 27, 2009

Another trip to CHOP today in the pouring down rain. It was a crappy drive, but brought good news. We dropped 3 meds today!! That means no more NG tube!!! Tucker is very happy bout that. Everything else is good too except He is not gaining any weight, so we are increasing his calories in his formula. We also found out that so far Tucker has no t-cells yet, but that is to be expected at this point.
He is really coming along developmentally. He is reaching for things & rolling over, & talking up a storm.
LIFE IS GOOD!!

Wednesday, October 21,2009

So once again we have an amazing baby!! We were at our weekly appointment at CHOP yesterday, it was a long day, but w/ good news. Tuckers has an almost normal level of lymphocytes!!! how amazing is that?? They said that at this point they didnt really expect him to have any yet, but once again he fooled everyone & his level is just about normal. His white blood cell count is now in the normal range also. He is now producing platlets all on his own, & all his bloodwork for this week looked great. They sent out lab work to test his immune system to see how well it is working so far. They are checking to see if he has T-cells yet, which at this point he might not, but the way he is going it wouldnt surprise me. The only real concern right now, other than keeping him healthy & away from anyone that is sick, is his weight. He is still not eating as much as he should be yet and is pretty much burning all the calories he eats. He isnt losing any weight, but he isnt gaining any either, which of course a baby his age should be gaining every week. He is very active though & just keeps growing longer. Developmentally he is still about a month behind, but in the past week has really started catching up. He is rolling over, but hates being on his tummy. He is starting to grab at things & likes his toys. He is just a joy, & I am so blessed to be able to stay home & play w/ him all day.
The power of everyones prayer is truly amazing!!! I am so much closer to god since this has all happened. Who knows, maybe that was his plan!!

Thursday October 14,2009

Today is 60 days post transplant!!!! Can you believe it. Things are going really well. As they say no news is good news, I have nothing exciting to tell you. Tucker goes to the doctors at CHOP every Tuesday, & so far we have had all good reports.
Tucker is really growing. H eis now about 13 lbs, & about 25" long. So he is long & skinny, which is what we expected since his dad is the same. He is a wonderful baby!!

Sunday, October 4, 2009

Its been a few days since I updated & I have very good news!! We went to Philly on Thursday & Tucker got his central line out!! Yea!!! Everything went really well, & he just has a little spot w/ steri strips on. He will have a little scar that matches the other one that he pulled out. So now all he has left is his ng tube in his nose that we use for all his meds. He is just doing so amazingly well.
We go to Philly on Tuesday for his weekly checkup. He gets his IVIG that day also which he gets every 2 weeks. That is an immune booster that he will be getting for another few months.
Not much other exciting things to tell. I know I say it every entry but Tucker is just the happiest baby ever!!! We definately have been blessed. He is the joy & light of our house.
He is als now a STEELERS fan!!!

Wednesday September 30,2009

We had a Drs appt at CHOP yesterday & we were very excited after the appt. Tucker had his bloodwork done & we were expecting him to need platlets. As I said before the platlets are the last thing to come back after transplant. Anything under 20 he would need them, normal is anywhere between 100-400. So his count last Thursday was 25 so I was thinking he would need them. The bloodwork came back & his platlets are at 65!!!! We were so excited, even the Dr was surprised. His little body is making them!! That means that he gets his central line out, which I am even more excited about!! We go back to Philly tomorrow to get the line out. He does have to be sedated for that, so please say extra prayers tonight, but i'm sure he will do just fine.
We have really settled into a good schedule & Tucker is doing so well being home. He is growing so big. At 3 months old he is now wearing 6-9mths clothes. He is rolling over, but he gets mad cause he gets stuck. His head is still a little weak, but getting stronger every day. He smiles all the time, & coos & makes wonderful little baby sounds. He is just a joy to have!!

Sunday September 27,2009

Today was such a relaxing day at home. Tucker loves being home!! We watched Nascar & the Steelers play ( even tho they lost). I am pretty sure that we have the happiest baby ever. He is so good.
We are really getting into a routine now. Tucker still has lots of meds he takes twice a day, & we have to care for his central line, & sometimes getting him to eat is still a bit of a chore. We also got great news on Friday. His Nurse Practioner called on Friday to tell us that his blood is now 99% donor, which is fantastic!!! Tucker has another appointment on Tuesday & hopefully he wont need platlets. Then they will consider taking out the central line. That will be such a relief. We still have quite a ways to go yet for him to be called "cured", but I do believe we are thru the worst, & now its up to his body to heel & us to keep him healthy.

Thursday September 24, 2009

Today is a great day!!!! We officially were releasded to come home today!!!! We got to bring Tucker home!!!We are so excited.
On Monday we had an appoitment,thinking Tucker would need platlets, and amazin he didnt. we were haapy about that because the platlets are the last thing to come back after transplant. He had been going about every 3rd day up to that point, so it was good news. So we had to come back today & they told me they would probably send us home because of the flu season coming on strong, it is safer to be at home. So we went in for our appt today thinking he would definately need platlets, & low & behold, he didnt!! His little body is starting to make them himself. That doesnt mean he wont need them at all anymore, but if he can keep it spaced out then they will finally take his central line out. That I cant wait for. Then they told us we could actually GO HOME!!
This is what we have been praying for because it means so much. The transplant is working, & we are on our way to just being a normal family, with a precious little baby.
Tucker, for all he has one thru , is the happiest baby. He wakes every morning with a big huge smile that fills the room. He truly is amazing & we are so blessed to have him.\
Thank you to everyone who has ben praying for us, & been on this tough journey along with us. Prayers are being answered!!!!!
Now I am going to sleep in my own bed, with Tucker snuggled in his very own bed, all of us back under 1 roof. It feels so good!!!
It just so happens to be JT's 18th birthday today too. It was a great day!!!!!

Friday September 18, 2009

I know i'v been a slacker w/ the blog lately, and i do apologize. I have been busy, but thats no excuse.
So Tucker is doing great!!! We were discharged from the hospital on Monday. YEA!!! We didnt get to go home yet though. We have to stay at the Ronald Mcdonald House for now. That is because there are a few loose ends yet. The biggest thing is Tucker still has his central line in , that is because he still needs platlets every couple days. So till that comes out we will still be in Philly. They dont want us going far because w/ that line there is aslways chance of infrction. He also has a feeding tube. He was having trouble figuring out how to eat again, but the last 2 days he has started figuring it out and we havent used the tube hardly at all.
Tucker is the happiest baby, he just smiles all day long. All his nurses at CHOP were so happy for him to go, but they were very attached to him, and it was a bittersweet moment when we left, kind of ironic almost, but the nurse who had been his very first nurse, also ended up being his nurse the day we left, &she was teary eyed as we were leaving.
So for now we are still in Philly till the line comes out. He has a Drs appt on Monday, so we will know more then, & I promise to keep this blog updated.

Tuesday September 8,2009

Its been a few days since I wrote. I got togo home on Friday & went to JT"s football game, it was a great game. Shawn was in Philly w/ Tucker having daddy time. On Sat, Nan,George & Keighly came down to Philly , but I waited till Sunday so I could get things done at the house.
Saturday morning bout 4am Shawn heard Tucker fussing, so he got up thinking he was just changing a wet diaper, & found that Tucker had decided to rip out one of his central lines. He was quite freaked out at first, but didnt panic. Come to find out, the nurse had just been in & already knew & had called for the doctor & was getting supplies. It turned out ok, they were going tro be removing the one he tore out later in the week, apparently he didnt want to wait. Other than that Tucker is doing great. He has weened of all the IV meds & everything is oral now, he is just about weened off the morphine, now he just needs to eat better, 7 we wil be discharged. He will have to keep the 1 central line in because he still needs platlets about everyother day, so that means we will only be aloud to go to the ronald mcdonald house. But we will be 1 step closer to going home!!! We are all getting really excited for that!!!
We still have a ways to go to be completly heeled , but the worst is over!!!

Wednesday September 2,2009 day+20 8:15pm

Not a whole lot to tell today. It was a pretty quiet day, other than Tucker is feeling a bit nauseous, nothing really is new from yesterday. The nausa is to be expected. He was a very happy baby again today. We had lots of play time. His body is a bit weak from everything he has been thru, so we are working on physical therapy. He tolerated it well today, & is getting stronger by the day. He still isnt to interested in eatin yet, but we will get there.
We are excited for tomorrow cause daddy is coming!!Yea!!

Tuesday September 1, 2009 9:15pm

Its Tuesday, the first day of September & its been a good day! I got to spend the weekend at home, & came back to the hospital on Monday evening feeling very refreshed. Tucker had a great weekend w/ his daddy & Sunday night Aunt Helen stayed w/ him. He is really feeling good & his counts are going up & up. The doctors are all amazed w/ the way he is healing & the rate he is engrafting. its awesome!!!
Today the Drs have decided to start taking meds away & weening his morphine!! This is the best thing i have heard in a really long time. Thats the begining preparations for going home!!How exciting is that!! He has to meet certain criteria & we are still a little ways off, but this is the begining of the process to be able to home!!! I think Tucker must know it, because he was the happiest baby today. I got so many smiles today, & his smile just brightens up the whole room!!!
Tucker is sleeping soundly & that means I should be too!!
Please keep praying, your prayers are being heard & God is healing Tucker!!!

Thursday August 27, 2009 day+13 9:00pm

Psalm 116:1 I love the lord because he hears and answers my prayers. This verse was given to Shawn by his sister & it is so fitting for Tuckers journey.
Last night was another sleepless night for mommy.Tucker once again wanted to be held all night, so that is exactly what he got. He heals when he sleeps! Mommy can sleep later. We had a good day today, and got some good news. Im just learning all this but i am going to try & explain this. So a white blood cell has 3 parts to it, lymphocites, monocytes & nuetrafils. Before the transplant Tuckers white blood cells , the few that he had were empty. So yesterday they told us he now has 2 nuetrafils that they can see, & we were very excited. This morning when the doctors came in they said not only does he have the nuetrafils but they also now see monocytes!! The transplant is working & Tuckers little body is doing its thing & starting to produce cells!!! We dont have a true count yet or any actual white blood cells yet, however they didnt expect to see anything at all till the end of next week. We have the most amazing baby ever!! After last week this was the most amazing news. We still have a ways to go , but we now know that things are happening and the sleepless nights just dont seem to matter. Every day as I sit here with Tucker it amazes me what his little body has to endure & he still wakes up & smiles at me. I am comforted in the fact that he wont remember all the pain is going thru just to be able to live.I know that God has big plans for our "Little Man"!!!!
I get to go home tomorrow for the weekend, till Monday , so I can be home for JT & Keighlys first day of school. I cant wait to sleep in my own bed, or just sleep for that matter. Tucker will be in good hands here with his daddy. I miss my other kids & i am excited to spend the weekend with them.
Please keep praying for Tucker!!!

Wednesday August 26, 2009 Day+12 6:00pm

Tucker had a very cranky night last night. Mommy didnt sleep till 8:00 this am. He wanted to be held all night, so that is exactly what I did. He was quite cranky & restless all morning long & finally the nurse gave him adavan & that has seemed to work quite well. The good news to this is the reason he is probably cranky... He has counts today!!!! not much, but enough to make the Drs take notice. They say he may get really cranky , possibly get a fever, but that means the counts are coming up. Thats because his body isnt used to having those cells & it has to adjust, plus they go to work rite away, which causes discomfort at first. This is what we have been waiting for!!!!

Tuesday August 25, 2009 9:30am

Tucker is out of the PICU!!!!

Monday afternoon we were transfered back down to the regular transplant floor. Yea!! Tucker is doing really good. The drs are all happy w/ his progress. It is now day +11 of the transplant and we are back on course. Last week was a bit of a bump in the road, however it did not interfere w/ the engraftment (the transplant taking). The infection that he had has seemed to clear, his biggest issue right now is his poor little butt! It is so nasty raw, I feel horrible every time I change his diaper. They tell me it wont get better till he starts making cells, which wont be for bout another week yet. He was also put on high blood pressure medicine, but that is par for the course for transplant kids. All the antibiotics along w/ the pain & discomfort contribute to that.
Tucker is really becoming very aware of things now & doesnt like to be messed w/ a whole lot. He is pretty content to lay in his crib or bouncy seat, but he loves to be talked to, & he has a mobile that he loves to watch. This morning he has been full of smiles, which is so amazing to see!!!
This whole journey is definately way harder than I could ever imagined. Shawn left on Sunday night to go home so he can work all week & it is very lonely being here w/out anyone, just me & Tucker. I just keep telling myself its only for a short time. I have the weekend to look forward to also, I'm going to go home for the weekend to hang out w/ JT & Keighly, I miss them so much, & Shawn is going to come here.
Please keep praying for Tucker. I know that God is listening. Through all this I definately have a stronger faith than ever!!!

August 22, Day +8 9:30pm

Im sorry its been a few days since I have updated, but its been a very rough week to say the least!!!!
Its Saturday night & Tucker is doing much better, however his mommy & daddy are exhausted. The last 5 days seem like it was just 1 long day. So to update, Tucker was on the ventilator all day Monday & Tuesday, then Tuesday night they decided he was ready to come off of it. At 2am they took the breathing tube out & Tucker was having a really rough time breathing. He had alot of flem & mucas that he was unable to clear himself & he kept choking, so by 5am they had to put the tube back in. It is such a heartbreaking thing to not be able to help your child & see them in so much pain & discomfort. On Wednesday Keighly(Tuckers big sister), & Aunt Helen came to visit Tucker. It was very hard for Keighly to see her brother with all the tubes & wires. On Thursday Tucker still had the tube in but was breathing over the vent & by the afternoon the drs felt he was ready again for the tube to come out, so at 3pm they removed it again. It was very stressful couple of hours, but he did great, he was definately ready this time. Shawn & I stayed up all night holding him Thursday night & by Friday morning he was almost back to himself. He is doing fantastic now & they have weened him of the many, many additional meds they had to put him on to get him thru those few days he was on the vent. We had a pretty relaxing day with Tucker today. He is doing fantastic!! Hes back to smiling, & looking all around, all the extra fluid he was retaining is gone & we are ready to go back down to the regular transplant floor.
Thank you to everyone who is praying, we are comforted knowing there are so many people who care about Tucker & family. It is very difficult being away from home & family for so long, but we just have to remind ourselves that it really is a short time to save Tuckers life, & hopefully in a few months this will just be a memory.

August 17,2009 Day +4 8:00pm

So its been a crazy couple of days to say the least!!! Where do I begin.......
Tucker went to sleep Sunday night & wasnt feeling very good at all. Shawn left to go home around 10pm. Tucker was on a morphine drip for his pain & was having alot of gagging episodes from the sores in his throat. His moniters kept going off thru the night, which alert the nurse if his breathin gets to shallow. So around 2:30 his alarm went off & I got up, I realized he wasnt breathin so well & called for the nurse & grabbed the oxygen. By the time the nurse came in he was ok & she thought mayb it was a false alarm, but within minutes it happened again. This time he wasnt hardly breathin at all & she called for an emergency. By this time I was so scared. Every nurse on the floor came running & they called the attending dr on call. So for about an hour the Drs & a few nurses were trying to figure out what was going on, during this time they had the oxygen mask on him, but he kept having small episodes where is breaths would get real shallow & they would have to stimulate him to breath. So around 5:00am we were all in the room & all of the sudden Tuckers breathing stopped all together! It was the scariest moment of my life! One that I wouldnt want anyone to experience. With no good way to describe what happened next, all hell broke loose!!! All the Drs & nurses went into immediate action, I was rushed out of the room. I called Shawn to tell him he needed to come right away. People were running all over & the attending Dr from the pediatric ICU came down(found out later he ran down 4 flights of steps to get to us cuz the elevators are to slow). I had no idea what was going on or even if Tucker was breathing, but I did know that he was in good hands & God & I had a little talk. Shawn apparently drove like a crazy man because he arrived in bout an hour & a half. Just as he got there we found out that Tucker was stable & had to be intabated( put on a ventilator) & was being taken up to the PICU. I felt like my world was just out of control at this point & I think Shawn did too. Things were happening very fast at this point. They took us upstairs to the PIcu where we sat outside of his room & watched a team of Drs & nurses work on our baby boy & we could do nothing but watch!!! Once they got him stable we were able to go in & see him. He was hooked up to so many things, it just was overwhelming.
Now they had to figure out WHY this happened. So as the day went on, they drew lots & lots of blood (so he had to have a blood transfusion & get platelets), & ran lots & lots of tests. There was many speculations by the team of Drs, from lung infection to thinking he just got tired. The lung x-ray came back clear, which was a relief. By this time it was looking like some sort of infection.
Tuesday morning tests started coming back & it is an infection in his blood. They arent sure exactly what strand of infection yet but they did say of all the things it could have been this was the best!! So probably between infection & the sores in his throat called mucisitis, his little body needed a break.
Tucker is doing much better today. His color is better & he is more relaxed. They have been decreasing the vent settings all day & he is doing most of the work now w/ just a little help from the vent. As i am writing this the doctor just came in & said they are hoping to take him off the vent tonight!! We are so excited. They have to do it slowly, but hopefully within a few hours he will be breathing on his own!!! Tucker is amazing!!
Please keep the prayers coming. I know God is listening & that he has big plans for our "little man" . We cant thank everyone & anyone enough that has been praying for Tucker. it has been a very rough couple of days for us. It is just so hard to see your child hurting so much, but knowing all this is happening to save his life!!

August 16, 2009 Day +2 5:30pm

Its a rough day for Tucker!
Last night Shawn & I were up most of the night. Tucker is very naseaous & he chokes & gags alot. Its a side affect from the chemo. The chemo not only kills the bad stuff but also the good. Its causing his GI tract to shed & he is developing sores in his throat & what they are calling "mucisitis". He is very flemmy. All those things combined are making him sick. It is also causing him to lose his appetite,(which was expected), so he is being hooked up to a nutrition IV now. He is also on a constant morphine drip now because the sores in his throat & his butt is still so raw. We were told that all these things would happen, & its all happening at once. Its very hard to see your child in so much pain & discomfort. I would do anything to take it away!!!
Please say extra prayers!!!

August 15,2009 Day +1 7:30pm

Sleep for Shawn n I is few n far between!!
Tucker is doing good today. His biggest issue right now is his poor little butt! It is so raw, which is a common side affect of the chemo. They have him on morphine for the pain because when he goes to the bathroom he screams, its so sad. He received a drug today called immune globulin. It is given to "jump start" his immune system. A good day for Tucker!

August 14, 2009 DAY 0 Transplant Day!! 8:00pm

The transplant happened at 4:32 today. It took all of 8 min. Amazing really!!! It was in a tube & the doctor just pushed it into his broviac line. It was his life saving moment!! We decided Tucker has 2 birthdays now. Now its a waiting game, his body has to do the rest. They will start taking his counts ahain at day +5. We wont really get excited or see much of anything though for 14 to 21 days. we do have a few more hurdles & worries to get thru. This next week we could see more of the side affects of the chemo, such as worse naseau, his hair falling out(what little is left), And possibly is poor little butt getting more sore. He is still on alot of medicines, & will be for awhile. Its incredible what such a little body can endure!!!
We are so blessed to have Tucker, & to have gotten the transplant today. I will never take life for granted ever again.
Please keep praying, god is definatley listening!!!!!!!!!

August 14, 2009 DAY 0 Transplant Day!!

Today at 3:30 is the big day!!! Transplant day!!

Shawn & I went to the beach for a few days w/ JT, Keighly & some other family. It was nice to get away & seeing the kids (I miss them). Nan (my mom) stayed w/ Tucker. He did great. He received the anti-rejection drug over the last 3 days. It could have caused some bad side effects, but w/ the help of prayer, & a really strong baby, he had NONE!! He does however have really bad diaper rash. They started him on morphine today for the pain, because diaper changes were horrible. He is much more comfortable now. We are just waiting now for the big moment!!

August 11,2009 Tuesday Day -3

Shawn & I are at the beach, but nan is there w/ Tucker. He is doing better than expected.He still has an appetite, but it is getting less. Tomorrow he starts the drug to prevent graft versus host disease. the drug has some bad side effects, so please pray extra hard for Tucker over the next couple days.
God is listening!!!

August 10,2009 Day -5 1:45pm

Day #2 of the second round of chemo (cytoxan). Tucker is definatly feeling the affects of the chemo. He is quite uncomfortable, & they have put him on adavan to help him sleep & be more comfortable. Amazingly he still has a good appetite.
Shawn & I are sneaking away for a few days to go down t the beach w/ JT & Keighly & some other family. Nan has come to be surrogate mom while we are gone. We are excited , but i'm feeling a little guilty. Hopefully he will behave for Nan.

August 9, 2009 10:00pm Day -5

So we are coming to the end of the first day of the second round of chemo. It was a bit of a rough day. Tucker didnt sleep well last night , so we started off really tired. They put the catheter around 9am. I didnt like that at all!! They stated the chemo around 10am & about 20 mins into he started feeling yucky. Its so hard to see your child hurting! He has just not been feeling real good all day, & its so hard to hold him because hes hooked up to so much. He does however still have a good appetite so far, which the drs & nurses just cant believe. They are warning us that he will probably feel worse as the week goes on.
Tonight we went down to get something to eat at McDonalds, AGAIN! We are both gonna need to go on a diet after this. We met another mom that has a daughter in a room right by us. Her daughter has brain cancer & she is very sick. They arent sure if she will make it or not, but the mother is very hopeful. The kids & families here are so amazing! So the next time you pray for us, please pray for this family, they can definately use it.

August 8,2009 Day -6 10:00pm

Almost the end of one more day. We have really learned to take one day at a time here, today was a good day. Tucker slept most of the day, if he wasnt sleepin he was eatin!! They are really amazed at how good his appetite is.(which by the way is a terrific thing). Not much going on. Tomorrow is a different story tho.
Tomorrow starts the second round of chemo. It is also the stronger chemo. This one will make him feel nauseoeus, tired, probably make his hair fall out(what little there is), could possibly cause sterility, & can possibly cause bleeding in the bladder. to prevent the bleeding they have to increase his fluids so the meds dont sit in his bladder. Because of that they have to strictly measure all his "ins" & "outs", what he eats, & how much he goes to the bathroom. Unfortunately because hes a baby, in order to do that he has to have a catheter put in. That sux! Its going to be a bit of a rough couple days so please say extra prayers!!
There isnt alot to do in this small hospital room & Shawn & I are here w/ Tucker. We are really learning alot about eachother & about life. We have to work as a team, we are learning patience w/ eachother, we are learning that we really do love eachother,We know that god does listen to our prayers, & we need to have faith. We know that we are truly blessed to have this most amazing "little man" in our lives. I think most of all we are learning not to complain. Truly if you ever think you are having a bad day, just come spend a day here in the oncology unit w/ these kids & parents, you will think twice about complaining!! I do honestly appreciate everthing I have so much more!!!

August 8,2009 Day -6 2:15pm

Today is a rather quiet day. Tucker has a day of rest today, which means he has no meds or chemo today. Shawn & I are taking advantage of it by holding & snugglin him. He seems to be very hungry today, which is a great thing. The next round of chemo is probably going to make him feel yucky! We are just kinda hanging out today. Other than a diaper rash, Tucker feels quite good today.

August 7, 2009 Day -7

Today is the last day of Tuckers 1st round of chemo!!! The doctors are very happy so far with how he is handling everything. They are also surprised that he still has such a good appetite!!! Our little tubby butt!!
I am tired tonight & Tucker seems to be just a little out of sorts. Tomorrow he gets a day of rest, which means NO MEDS!! it also means he wont be hooked up to all kinds of tubes which is great. We can snuggle w/ him all day.

Tuckers counts They wont be checking his ANC level now til day +5
WBC: 3.7
HGB: 12.6
PLTS:415

Shawn & I are thankful to all those who are praying for Tucker & us.

August 6, 2009 9:00 pm

Almost the end of another day. Tucker had a really good day. Rather quiet & mellow. He is eatin good & tolerating everything really well. The drs are all happy with the way things are going. He seems to be gettin used to all the sounds & beeps , & people in & out pokin at him. It seems weird but its almost like he knows what is going on, & that all this is to cure him. Tucker Daniel is truly an amazing baby!!! He is teaching me great things!! I do believe god sent Tucker here to do great things, & we are priveleged to have him in our lives!!
I am learning here to look no farther than today!!
Please keep keep prayin, God is listening!!

August 6, 2009 Day -8 9:30 am

3 days down!! I am learning just to think about 1 day at a time, if you think further its just to overwhelming. We are at day -8 today, which means 8 days till transplant! So let me explain some things. Every day they take blood to measure his "counts". That means they are measuring 4 things: 1) ANC level - during chemo this will go to 0. After the transplant this is the most important thing we are looking for, when the level gets back up to 200 is when we talk about coming home!!!
2) WBC- white blood cells. This is what Tucker doesnt have. He does show a count right now but they are not any good.
3)HGB level- which is his hemoglobin level. This is important because when this level goes to 8 or below that means he will require a blood transfusion. normal for a baby is between 12 & 16.
4) PLTS- which is his platlet count. This is also important because of how much blood they take. This number is also very important because he has to maintain a certain level to go home.
So every day I will post his counts.

We had a fairly good night. I even got a little sleep. Tucker woke up happy this morning, & so far we are having a good day.

Tuckers counts for yesterday : ANC: 1296
WBC: 2.7
HGB: 8.0
PLTS: 436

Tuckers counts for today : ANC: 714
WBC: 3.4
HGB: 12.2 (had a transfusion yesterday)
PLTS: 357

August 5 11pm

Well its 11pm & Tucker just fell asleep. Dont know for how long though, the nurses will be in to bug him soon i'm sure. His blood transfusion went well & he seemed to feel better when it was done. Shawn & Keighly left awhile ago, so its just me & Tucker.
I'm going to try & sleep a little now, while he is.
Dont forget to say prayers!!!

August 5,2009 Day -9

This is definately not the place you want to be if you want to sleep!! We arent getting much, but I guess we shouldnt complain. The nurses are in all thru the night checking his vitals & giving his meds. The doctors were in early this morning. So far Tucker is doing really good. I think better than I would be! As the day goes on, He seems to be feeling the affects of all the meds & the chemo. He now has diarreah & his appetite isnt great, but thats to be expected. This evening he is getting a blood transfusion. That is because his hemoglobin level is now getting to low due to all the blood they are taking. The transfusion started at around 6 & takes 3 hours. There are possible reactions to the blood, but so far so good.

Nan left this afternoon to go back home, but I dont think she wanted to. She will be back on Monday. Shawn & Keighly are getting ready to home shortly too, So its just gonna be me & Tucker.
Keep praying

August 4,2009 Day -10

Didnt get to much sleep last night. Tucker is not used to all the commotion, lights, noises & bein woke up every couple hours. Its definatly not the same as bein in our bedroom with noone but just us. They started Busulfan this morning at 2am. That is the first chemo drug that he is getting, then they had to draw LOTS of blood!! They thought he might need a blood transfusion today, but his counts were all good. He is also on about 5 other meds, rangig from antibiotics to meds for all the side affects of the other meds. It just amazes me that his little body can handle all this. He is being such a trooper! We met lots of people today, including his doctors from the transplant team, nurses, physical therapists & other patients. Tucker is starting to get back on his schedule, & seems to be getting his appetite back. This evening Shawn & I helped the nurse change the dressing on his central lines. They look much better now.

Being here really makes you appreciate the little things in life! Cherish every moment!!

Please keep praying, god really does listen!

August 3,2009/ Day -11

Today begins Tuckers journey to getting healthy.Our journey starts at 3am when we have to wake up to get ready for the adventure.It is so bittersweet, we know that Tucker has to go thru so much, but in the end, he will be a healthy happy baby!! We arrived at CHOP today at 6am. We were all very nervous and not sure what to expect. They took Tucker into surgery about 8:00 to put in 2 central lines. They are lines that are surgically placed into his chest and run into a large artery in his heart. The purpose of them is so they can administer his meds thru them & draw all his blood that way & dont always have to stick him. So far they dont realy seem to bother him.
He slept alot thru the afternoon & didnt have much appetite, which was to be expected. As evening came he started to get a little restless, & more alert. The anestesia was wearing off, and I think he started wondering what was going on.
They started his first meds at 8pm. They are the antibiotics. We didnt get much sleep, between The nurses coming in quite often & him just being restless it was a long night. The first round of chemo started at 2am. At 430 they begin takin lots of blood for all kinds of tests.
All in all it wasnt a bad start to a new begining!!!
Please keep praying!!!!!!!!!!!!!