October 30, 2011

So we are here at home enjoying our time together! :-)  We got to go to church this morning...such a blessing!  We got to spend some time together this weekend going on walks, shopping for clothes for Jackson, grocery shopping...and just playing at home.  I have learned that through all this I will never take the little things for granted ever again.   I am blessed to give my baby a bath, to rock him to sleep, to watch him be able to eat, to play and roll around without tubes,  to take him to the grocery store, to watch him sleep on the baby monitor, to come home straight from work and have baby waiting for me with open arms...the list could go on and on....Thank you Lord for this special time at home!

October 25, 2011

Yeah!!!! Jackson gets to go home today! So HAPPY!!!!  They haven't told us yet when he will have to come back, probably in a week.  I know so short...but we are going to enjoy every minute!  Jackson is doing a great job sitting up.  He can sit up for very long periods of time.  He also loves the bathtub now that he can sit up in it! (I will post pictures of that soon)  He really likes riding around the hospital in their little red wagons now that he can sit up in them.  Jackson has a cardiologist appointment tomorrow afternoon, please pray... the doctor is concerned that the chemo is causing his heart not to fill properly.  They are hoping it will eventually resolve on its own once the chemo is out of his body.  If not they will probably put him on a another medication.  Thanking the Lord for some time at home with my baby!

October 21, 2011

Well it finally happened....Jackson lost his hair...he could care less, but mommy is about in tears...I loved his little mohawk.  So the bacteria is apparently so rare that it will take several more weeks to figure out exactly what kind it is...so the infectious disease people are saying that by Monday he will have had 14 days of 2 kinds of antibiotics and has not had any issues develop that would cause concern so they are thinking he might be able to come home on Monday or Tuesday. It has been said that the bacteria possibly could have been contained to just his line, which if this is the case is a relief to us.  Today is day 18 and we finally have a glimmer of freedom from this hospital for a little bit.  A football player named Gary Guyton from the New England Patriots came to see Jackson today at the hospital...pretty cool! 

October 16, 2011

Well here we are still in the hospital...this has become our first home, and our real home is our second home...No need to buy a vacation home, we already have one...living the lap of luxury here:-)  Yesterday Jackson received a blood product, I don't remember the name that is supposed to help boost his immune system.  He had a great day yesterday laughing and playing.  Today he is very sleepy.  His platelets and hemoglobin are very low.   Since the doctor's have removed his central line, everything given to him (blood, platelets, antibiotics...)is given to him through the IV in his foot.  Jackson is a wiggle worm and he wiggled his IV a little too much and it infiltrated (sp?) today while they were trying to give him blood...poor baby did not like how that felt.  Right now we are waiting for them to come in and probably replace his IV so that they can finish giving him blood.  They have figured  out that the bacteria in Jackson's blood/line is a mycro bacteria and have ruled out the two most dangerous forms (TB and something to do with birds ).  They have called in infectious disease(like the people on House :-) to help determine which specific kind of mycro bacteria that it is.  When they figure it out, which will hopefully be sometime this week they can tell us how long he will have to be in the hospital on antibiotics.  So far, all of the cultures that they have taken since his line was removed are still negative, unfortunately they still have to treat him with antibiotics just to make sure.  Thank you for your continued prayers. 

Oct.13... I.D.

So today I, Erik, am writing an update on what happened recently. Most of this is hard to explain due to the gravity and literal comprehension of the bacteria.  Alyssa and I talked today and she made a comment that I can fully understand and agree with. You know that saying "this has been a roller coaster ride"? That describes our journey well. We have been beaten(sounds nice and southern) like a kid in a back dark back alley. The worse part is that Alyssa and I haven't experienced anything compared to Jackson, and we are adults. That just makes me feel so guilty and weak. You know through this we have gained a new understanding through so many different view points, but it has been a long journey. The news that Alyssa reported yesterday was the beginning of a few steps. Well here is the rest of the story...(harvey). Today Jackson's antibiotics changed. Instead of getting one type of antibiotic, he is now receiving two. why? The blood that was taken a few days back grew more bacteria. This strain of bacteria is not terrible nor deadly as long as it is treated, however the strain is related to Tuberculosis. No, he does not have Tuberculosis nor is it close to that. The reason I tell you of the strain is because that is why I.D. (Infectious Disease) was called in. They are worried that the bacteria is one of two different types of bacteria, again however they are not sure as to which one it is or if they are certain that it is one of those two bacterias.  We will not know anymore answers for at least 1-3 days. Just a Reminder, Prayer is needed, Worry is not. This is not a dire situation, and the doctors seem to be confident in that. Please Pray also For Alyssa and I. Emotional, Physical, Mental strain is wearing us down.  God is good, no matter the situation we face. "Rejoice in the Lord Always and again I say Rejoice"

Erik

October 12, 2011

I am having one of those days where things just don't go so well and then by the end of the day the littlest thing seams like a big deal.  It is so hard to accept, because we can't understand, why God has things happen.  Through all of these rounds of chemo Jackson has always had to be in the hospital for several weeks to a month at a time.  These last two rounds were supposed to be a quick in and then go home...unfortunately Erik and I got our hopes up for that...He has already been there a week and a half and yesterday they gave us the impression that he could go home in a couple of days.  Today they told us that they want him to be on antibiotics for 10 days from when they started them before he can go home.  So it looks like he is going to be there another week and a half (two weeks longer than planned).  I know it might sound silly that we are so disappointed about this...We know that God has a reason and this is what is best for Jackson, but sometimes it is just hard to accept it.  We are so weary of this and are trying to see the light at the end of the tunnel.  Please pray for strength and encouragement..Trying to do the best we can in all areas of our lives is proving to be difficult.

Meditating on Psalm 27:14- Wait on the Lord: be of good courage, and he shall strengthen thine heart:  wait, I say, on the Lord.

October 11, 2011

Jackson had his infected central line removed today.  They did not replace it though.  They put what is called a PIC line in his foot.  It is kind of like an IV but it goes in deeper.  They are using it to give him antibiotics.  They are trying to make some decisions as far as what to do next.  They can either wait until his counts come back up, and then put the central line in OR they can leave it out until his next chemo treatment and then put it in.  There has also been some talk about a temporary line.  I have no idea what that is.  Unfortunately all the doctors come around to see Jackson in the morning when Erik and I at work and by the time we get to the hospital they are gone for the day.  The information we get is second hand from the nurses.  (very frustrating)  I am thankful that he did well today during his surgery and that he ate well the rest of the day AND kept it down. :-)  We don't know at this point when he will be able to come home.  Thank you for your continued prayers! 

October 10, 2011

Well Jackson's line grew bacteria in both lumens of his central line.  Apparently this is something that is fairly common with central lines.  Unfortunately it means that it will need to be replaced right away.  They are talking about replacing it tomorrow morning, which means another surgery and central line.    Our prayer is that after it is replaced that there will be no more bacteria, and also that they caught it in time for it to not have spread to other parts of his body.  On the positive note his echo did not show any bacteria and he finished receiving his chemo today.  Please pray!

October 9, 2011

Please pray for my baby...whenever he spikes a fever they take blood cultures to see if there is any bacteria in his lines.  Usually they come back negative, but his blood cultures from this week are coming back positive.  This means that they have to give him antibiotics.  They are also going to give him an echo to see if there is bacteria growing at the end of his line in his heart....sometimes a foreign object in the body can grow bacteria.  Unfortunately for us, this means that he might need to get a new line, and he will probably have to stay in the hospital longer than anticipated.  We would really appreciate your prayers!

October 8, 2011

Jackson is doing well today, so far no fevers yesterday or today...Yeah!!! He is active, happy, and playing!  Thank you Lord!

October 5, 2011 Happy Birthday my sweet boy!!!

Dear JackJack,
I can't believe that a year ago today I was in the delivery room giving birth to the most wonderful baby boy...YOU!  Your daddy and I are so lucky to have you  in our lives.  You have taught us unconditional love, patience, trust, faith, hope, and courage!  Who would have thought that someone so small could teach so much.  Thank you for your sweet smile, your contagious laughter, and your Jackson cuddles. :-) You are blessed with wonderful people in your life who love you so much and pray for you everyday, but more importantly you are blessed with a wonderful Heavenly Father who loves you  more than anybody.  My prayer for you is that someday you will personally know your Heavenly Father who created you EXACTLY the way he wanted you!  I love you Jackson!  Happy Happy 1st Birthday son and may you have many many more!!!
Love,
Mommy

Miracle is a word I have used often to describe so many things when it comes to Jackson. To have many percentages shown to us as to Jackson's survival rate whether it was from his birth, surgery, heart health, or leukemia is scary, but today is proof that Our God is bigger than any percentage. Jackson, Today we celebrate a day which I feared would never come. I feel like the proudest Father around. I could not ask for such a wonderful child. You have taught me so much as your father and not just in a fatherly way. You have taught me more about who my God is and how my love for you compares to my fathers love for me. You could not have been more perfect for our family and you are loved dearly by so many inside and outside of our family. Happy Birthday Son! Daddy Loves you!
Love,
~Daddy

October 4, 2011

Please pray for my baby...he is not doing well today.  The chemo has made him spike a fever and he feels so yucky the only time he isn't crying or fussing is when he is being held.  We are hoping he will feel better soon. 

October 4, 2011

I forgot to tell everyone that they got the results of the bone marrow biopsy back and the test came out GREAT!!! No signs of leukemia....:-) Yeah!!!

October 3, 2011 part 2

Jackson has now officially been admitted now.  He has already been on his chemo for about 2 hours.  He has had a long rough day...so has mom and dad...so tired.  Thankful that he only has one more round after this. 

October 3, 2011

We are sitting in the hospital waiting for a room to be ready to admit Jackson into for round 5....very thankful that we are finally on round 5.  Praying that he responds well to treatment, and continues to eat well throughout it.  He is to have 7 continuous days of chemo infusion, and then hopefully will get to come home soon after.  Please pray for our sweet little man!