Going our seperate ways!

Two weeks ago Alyssa and I left the Aflac floor(Cancer Floor) of Children's hospital for the last time as chemo of the 6th round had been completed. Sadness and Joy filled our hearts to know that the difficult process was over... Fast forward to last night Dec. 3rd.  During the day Jackson had spiked a slight fever. This fever was nothing to be worried about. A 99-100.5 is nothing for Jackson. Well as the night grew longer, at about 5pm his temp still hovered at 100 degrees. By 8 o'clock it had risen to 100.8. So to be sure Alyssa called the on call Hem/Onc Doctor to get their opinion. After a little discussion they decided to have us bring him into the ER. Yes another ER visit at 8:30 at night.


This story is to add a different character in the scenario though. For about 3 weeks Alyssa has been fighting a cold and cough. Well last night about 8 pm it just seemed to get worse. So After much discussion Alyssa and I decided that we needed to go separately to different hospitals.  So at 8:30 I( Dad) and Jackson headed down to the ER at Egelston arriving around 9:30. Alyssa called Diane( Her Friend from school) and asked her if she could drive Alyssa to Athens, to go to the hospital. Thankfully Diane is a wonderful friend and was willing to do this favor for Alyssa. So needless to say I was at one hospital as Alyssa was at another, about 1:45 min apart. Alyssa was diagnosed with Bronchitis and the beginning stages of pneumonia. Alyssa was given her meds and she finally got home around 1am this Sunday morning. ( Diane thanks for taking your time to help out our family, even when it was so late at night).

Jackson and I were received at the hospital right away and moved straight into a room. After a few hours they made a decision to admit him. His temp only reached 102.1 and his counts were actually doing well. With his blood counts still on the rebound they wanted to admit him and eliminate the fever as soon as possible.

Jackson and I are delightfully enjoying our time back here on the Aflac floor as he recovers from this issue. Alyssa is curled up in bed, coughing her lungs out(not literally) and I am torn. To take care of my wife, yet at the same time, take care of my son. Alyssa is a strong woman and she is capable of so much, but as all of get sick, we want someone to be there to take care of us. Please Pray for Alyssa to heal, and to heal quickly. I have a hard time imagining the struggle of coughing and sickness for 3 weeks, but she has been strong and continues to fight. I see where Jackson gets his fight from! Please pray also for Jackson as he is recovering here at Children's. Thanks again for those who read this. Some of our encouragement comes from knowing who cares and by the comments on our Facebook pages and by the viewers of this blog. We are thankful for what God has done in our lives, and we look forward to the future He has in store for us.

November 26, 2011

We brought Jackson to the hospital today. They checked his blood counts and although his counts are very low they are not quite low enough for a transfusion. The doctors are going to call us to come in Monday or Tuesday to get his transfusions instead.

November 25, 2011

Just asking for prayer for us tomorrow.  We need to take Jackson to the ER tomorrow to get his blood checked and probably get some transfusions.  When we left the hospital last Friday the doctor told us to call if he starts to bruise badly before his clinic appointment on the 29th.  Today we discovered a quarter sized nasty bruise on his arm.  We called the hospital and they said it could wait until tomorrow but to bring him in.  It will be a long process because they have to actually admit him to the hospital to get transfusions on the weekend....and as everybody knows, everything always happens on the weekend when no one but the ER is opened.  We appreciate your prayers~

Calling all prayer warriors...

Usually Erik and I use this blog to update everyone on Jackson...but today I am asking for prayer for my mother.  I don't know how many of you out there are aware of this ( I hope she doesn't mind me sharing)  but my mom is currently battling lung cancer.  She went through chemo and radiation, and at this point from my understanding is that they don't feel they can cure it, they are just going to try and maintain it from getting worse.  The cancer has spread to places on her back bone and rib.  She has gone through radiation to help get rid of those spots.  My prayer request for you is to pray about her pain.  She is in an unbelievable amount of pain.  They have tried giving her pain meds but those seem to make her nauseous  and out of it.  She was admitted last night to a hospital to help with the pain.  I have not spoken with her because of the pain she was in just with the people who are with her.  Please pray that they will figure out what needs to be done to help get rid of the pain.  My heart hurts tonight that I can't be with her to comfort her.  Usually you think of your mom comforting her daughter, yet I want to comfort my mother so badly.  I ask any of you who read this to please join me in prayer for my precious mom.  Thank you.

HAPPY HAPPY HAPPY DAY!!!!!!!!!!

The light at the end of the tunnel has finally arrived!  Kinda. Today we brought Jackson home from his 6th and final round of Chemo!!!!!! This round they gave him his chemo and released him immediately. He is still on house arrest due to his blood counts dropping and elevating in the next 2 weeks. We are more than excited to be home with our dear child. In Alyssa's terms.... YEAH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!   Jackson still needs to go back in to the hospital to have his blood checked and to see if he needs a blood or platelet transfusion, he will need to have surgery to remove his PICline, and he needs one more bone marrow biopsy.  

You know that moment when you finish a task, trial, or obstacle, and you look back after it is over, thinking about what it took to accomplish it, well as we walked out of our little "vacation" home in the hospital, whether it was this room or that, we both teared up a little and had a big sigh of relief. It overwhelms our hearts and we get emotional and thankful that the process is basically complete. Please don't get me wrong, sadly the process is not over. For the next 2 months he will have to go in periodically to have a check up, blood, or a bone marrow biopsy. Then as for hospital visits, we begin the process of check ups with the doctor once a month or once every two months for the next 4-5 years. The hardest emotional task seems to be behind us now,  but prayers for no re-occurrence  of leukemia and heart issues would be GREATLY appreciated.

 Tonight as we were waiting to be discharged we spread out Jackson's beads of courage on the couch and started to count them.  It was amazing how much strength Jackson has shown over the last 8 months. Out of all the beads that he has earned, we have created a little list of his accomplishments. Below are only a few of Jackson's battle wounds of courage:
- 688 Total Beads
- 116 Night stays in the hospital
- 178 Sticks/Pokes
- 21 fevers ( from 100 degrees to 106.9 degrees)
- 6 surgeries
- 5 bone marrow biopsies
- 100's of other numbers from chemo, antibiotics, blood, platelets, etc...
- And most importantly 1 BIG SMILE

Giving God the glory for his work in Jackson and the work He will continue to do!

November 16,2011

So so soooo thankful that my baby has been fever free for 2 days!!!!! Thank you for all your prayers.....continuing to pray that the fevers continue to stay away. On a side note I have been sick with a nasty cold and I have had to stay away from Jackson I am hoping I get better soon so I can be with my baby...please pray that this goes away quickly :-)

November 13, 2011

Asking for prayer for our sweet baby...his temperature is really spiking this round last night it got up to 41.5c (106.9 degrees F)  I was pretty panicked but the nurses say it can get up that high with chemo.  It has gone down since then but it keeps going up, give tylenol, goes down...and repeat.  He is feeling pretty miserable.  All he wants is to be held and cuddled...and frankly I don't blame him.  Even though Erik and I know it is his last round...he doesn't understand that, he just knows that he feels yucky.  We would appreciate your prayers that he would begin to feel better. 

November 11, 2011

So after a very long day of waiting in different areas of the hospital Jackson was finally admitted and chemo was started at about 6:30 tonight.  Everybody was so excited for us that this is his last round.  It was strange, they put us in the same room we were in for the first round of chemo...very fitting...finishing where we began. :-)  Please pray that his new PICline will work well and that it will last as long as needed.  Please pray that Jackson will not get an infection or fever.  We are also hoping and praying that all will go as planned and he can come home next weekend. 

November 10, 2011

So, tomorrow we head back to the hospital.  He was supposed to be readmitted last week, but one of his blood counts wasn't quite high enough yet.  We enjoyed the extra time at home.  We are praying that his counts will be where they need to be to get this last round started tomorrow.  We have to be there at 8:30 tomorrow morning.  They will draw blood to get his counts and then if they are good he will be sent down to where they will place his temporary line (he will be put to sleep for this).  Once the line has been placed they will get things in order to get him admitted, put in a room, and get his LAST round of chemo started!!!  Please pray for us tomorrow, that everything will go smoothly.  Also, Jackson can't eat anything tomorrow until his procedure is over, and he will be very hungry and grumpy.
Finally seeing the light at the end of the tunnel,
Erik and Alyssa

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!

September 10, 2011

YEAH!!!! Jackson got to come home last night!!!!  I am so happy!  We are praying for an uneventful time at home!   He goes in next Wednesday the 21st to get a bone marrow biopsy and to check his blood counts.  We are so thankful to have time at home with our little man! :-)

September 7, 2011

Jackson is doing well today!  His counts are up a little bit...we are hoping this is a good sign and that they will continue to go up so he can go home really soon!  He is starting to show that he is a little sinner too...:-)   He is definitely starting to test authority, and will scream and cry when he doesn't get his way.  He also is like every other child and does not want to eat his vegetables.  :-)  Erik and I sometimes have these moments when we are stern with him or discipline him and he makes the funniest faces and we both have to look away or walk away or we will laugh.  ( I know that is terrible :-()  On Monday we had some bad weather here and while we were at the hospital they had a tornado warning.  So they moved every patient out of their room and into this central area....so many germs...Thankfully it only lasted about a half an hour.  Thank you to all the prayer warriors out there who faithfully pray for us on a daily basis....I know it is because of people like you that God gives us strength even on the hardest days. 

My Little Love

Erik Made this for me and I love it!!!

September 4, 2011

Jackson is happy and playful today!  His blood counts are very low, my guess is that they have bottomed out....praying they will come up quickly so that he can go home!  I have gotten another cold and so I have to wear a mask around Jackson....the fun of being a teacher...:-(  I am hoping I don't get him sick.   We are enjoying spending the day together.  Jackson sends out lots of hugs!

September 2, 2011

Today Jackson's blood counts dropped.  He received blood today because his hemoglobin dropped below 8(normal is 12 and above).  He has been very sleepy and mellow today because of his low blood counts.  He is currently still receiving antibiotics and will probably continue to do so until his counts come back up so that he doesn't spike another fever.  So far the blood cultures they took on Wednesday are still negative!!! yeah!  They have to monitor them for a little while more, but negative right now is on the right track.  Thanks for all of the negative thoughts! :-)  I can't believe in 3 days my baby will be 11 months old...however it kinda feels like he should be 11 years old! :-)

August 31, 2011 -Back to tubes...

Jackson spiked a 102 fever today.  So they immediately put him on antibiotics and IV fluids.  They also took blood cultures.  If the cultures come back negative he will have to be on antibiotics for a couple of days.  If the cultures come back positive, he will have to be on the antibiotics for another 2 weeks.  Which means a lot longer hospital stay.  Praying for negative cultures.  Please pray for Erik and I as we work through all this.  Thanks!

SO EXCITING!!!!

Ok, so Erik and I just saw Jackson sit by himself for a little while without help to be held up!!! Sorry about the quality of the video I took it with my camera phone.

August 30, 2011

So about 10 min ago they unhooked Jackson from all his tubes!!! As long as he keeps up eating well he can stay off the fluids.  He can now take walks around the hospital with his mask on.  Tomorrow they start taking blood to monitor his counts.  Praying they go down and come up quickly. 

August 29, 2011

Yeah!!! Jackson finished his 4th chemo infusion today!  Now we just play the blood count waiting game again.  He did about the same as he did yesterday, hopefully tomorrow will be even better.  I wanted to post a picture of his updated beads.  The last time we posted a picture it was in the middle of round one and I think he had about 3 and half strands.  This is what he has now:

August 28, 2011

Jackson seems to be doing a little better today! He is eating a teeny bit more and stomached some peaches without throwing up.  He is currently playing with daddy and smiling.  He is actually trying to get the computer screen from me and trying to read it.  Please continue to pray that he will feel better and eat.  He has 26 more hours of chemo to go this round!  

Standing Firm

I think today's title describes Jackson. Today he is fighting. Fighting for sleep, which the cytarabine (chemo(http://en.wikipedia.org/wiki/Cytarabine)) is causing. Since he has been in the hospital, 2 nights, he has been accompanied by 2 fevers. Though in a normal case 101.4 and 100.6 are not to frightening, to Jackson this is a battle. Why? The Cytarabine and Daunorubicin (http://en.wikipedia.org/wiki/Daunorubicin), which are two of the three chemo treatments he is getting, are helping to lower his counts whereby his ability to fight off infection become virtually non-existent. Everyday we see Jackson not only as our Son, but as our encouragement. Encouragement to make it through a 15 hour days with no slowing down or encouragement to fight our way through trials that seem to constantly show up no matter how small or how big they may be. Standing Firm is who He is day in and day out. He is an example to me in comparison of my relationship to God. Am I willing to stand firm day in and day out no matter what the possibilities may be or how high I need to jump to accomplish the task before me? No words describe the love we have for Jackson, only our actions do the talking. That is what he has shown me Today!

Hope!

Do you ever have one of those days where you realize or accomplish something that seemed afar off? I think today was one of those days. In the beginning of this process, the whole thought of this was long and drawn out, but now we only have 3 more rounds to go. This still seems like a lot, but knowing that the treatments get easier on Jackson make me feel a little better. As it has been before, Jackson is in for 14-32 days depending on how he responds to the chemo which started today at 6pm. What I realized today, was that in the beginning of the knowledge of Jackson and his complications, I had so little understanding of Hope, Love, Faith, and Trust. Now that we have been enjoying the laughter and love of this wonderful child, I have come to see how easy it is to get down in life's struggles and yet those darkest days in my life are still better than Jackson's.  He has been an encouragement to me, and my Family. My God has opened my heart and eyes more than I ever thought would happen and I see more joy in life than ever before.

Sometimes I just want to ask why???

Back to the ER we go....Last night Jackson's 3rd central line sprouted a leak.  Erik took him to the hospital where they successfully patched it, however one of the lines has a clot in it, so another new line may be possible next week.  Jackson will be readmitted to the hospital next Friday for round 4 of treatment.  We appreciate everyone's prayers.

July 30, 2011

Yesterday was one of those days where I want someone to pinch me to see if I am dreaming.  The doctor came in yesterday afternoon and said, "Happy day!  You can go home!"  What????  He has never come home that fast before.  It has always been 3-4 weeks and it has only been 2...I couldn't believe it.  So we quickly made phone calls and some willing friends helped us get all of Jackson's stuff home.  Usually he has to have platelets or blood but this time he didn't.  I am so happy to be home!!!  We were praying for some encouragement and the Lord blessed us with some.  Today I got to feed him sweet potatoes in his highchair at HOME! Happy Day!!!

July 29, 2011

Jackson is doing well...his counts are still very low, but he is feeling much better.  He is enjoying playing, rolling, sitting, laughing, and just being his happy self.  We have been working on getting him to eat solid foods as well as formula.  The last couple of days he has been doing pretty well opening his mouth and eating.  He is still really messy, but he gets some of it into his belly. :-)  This week his new food is bananas and he seems to really like them.  In a couple of days we will try green beans.  I can't get him to eat the rice cereal.  He hates it, even when it is mixed in with baby food.  I can't believe I already have to go back to work next week.  I am going to miss spending so much time with Jackson.  Please pray for Erik and I as we start driving separately to the hospital every day after work.  It gets very old very quick.  Thanks for you prayers!

Sweet boy!

At the hospital we put blankets over the sides of the crib so that it is darker and he will go to sleep without getting distracted.  Today he figured out how to pull them down and look out anyway!! Silly sweet boy! Peek-a-boo!

July 26, 2011

Jackson's counts continue to drop...hopefully that means that this time next week they will be on there way back up.  :-)  We are so thankful for friends, church, and family who are there to help us in our time of need.  We have found people to watch Jackson that first week I have to be back at school.  Thank you Lord!  Sometimes I feel like when we feel the lowest, God sends special people into our lives to encourage us.  Thank you Lord for friends!

July 25, 2011

"Fear not for I am with thee; Be not dismayed for I am thy God.  I will strengthen thee yea I will help thee yea I will uphold thee with the right hand of my righteousness" Isaiah 42:10

July 24, 2011

Yeah we finally got moved into a bigger room at the hospital last night!!!!  Much more room for Jackson to play!  We brought in his excersaucer from home and he is really enjoying it today.  Eating is still a big concern for us....he eats, just not enough.  Please pray!  We are also asking prayer that we would work out who can watch Jackson when I have to return to work August 1st.  We have a nanny but she can't start until August 8th.  I don't want him to be alone here, but I can't take off the first week of school.  Thank you all for your continued prayers and encouragement to Erik and I.

July 23, 2011

Good morning!  I just wanted to share a funny story about Jackson! :-)  Yesterday after a miserable day I decided to give Jackson a bath.  Giving him a bath at the hospital is different than at home.  You have to do it on the hospital bed.  They give you this bowl about 12 inches in diameter and about 5 inches deep.  Not big enough for a baby to sit in.  So I just lay him on the bed next to the bowl.  I spread towels over the bed and filled the bowl with warm water about 3 inches full.  I washed Jackson's hair and then he decided that he wanted to be in the water I guess. He reached over and grabbed the tub with one hand and pulled it over himself and dumped the whole tub of water on top of him at once.  So he is laying there in a huge a puddle of water looking at me like, "what just happened??!!"  Our poor nurse had to change his bedding for the third time that day.  It just really made me laugh...I wish I had thought to take a picture! :-)

July 22, 2011 Part 2

Please pray for Jackson...he was doing really well this morning with eating and then after his second feeding you could tell he didn't feel good.  He then proceeded to throw up several times and you could tell he just didn't feel good.  They give him medicine and it seems to be helping for now.  The doctor says that he might have sores in his throat from the chemo, so they might be giving him pain meds for that.  It is so hard to see my baby feeling awful.  His counts are starting to drop, so now we just wait.

July 22, 2011

Jackson is doing well today.  He went off of his IV fluids yesterday.  So he can at least move away from the crib now.  We are working on getting him to eat more still.  His eating feels like a constant battle.  No fevers since the chemo stopped. :-)  We are still waiting for a bigger room.  He is very playful today and happy! 

July 19, 2011

Jackson is on his last few hours of chemo today for round 3.  This round seemed to make him more sick to his stomach than the others.  Last evening he actually threw up (which was a first from chemo) They are giving him stuff to help make him feel better.  He hasn't had issues with fever in the last 24 hours, which is a blessing.  One of the chemo drugs Jackson gets is oral.  The first round I noticed that the oral chemo was a purplely color and smelled like grape and he would take it with little problem.  This time it was clear and he did not want it.  They decided yesterday that they would have to put in an ng tube(a tube that goes through the nose into his belly, he had one to eat with before his heart surgery) to get all the medicine in him.  I asked the doctor why the medicine was a different color and he said"it's a different color?"  I explained and he said "hmmmm...this medicine isn't flavored.  Let's try flavoring it before we try an ng tube."  So they did and he sucked it right down.  :-)  I don't understand why it wasn't flavored in the first place.  Thank goodness he didn't have to have a tube right now.  Please pray that his appetite will pick up especially after chemo is over.

July 17, 2011

Jackson is feeling better today!  He had a temp of 100.8 this morning, but now it has gone away(for now at least).  He was the happiest he has been in the last couple of days today.  Thank you for your prayers, we really appreciate them.  We also had a prayer request answered and that is that we have found a nanny for Jackson when I return to school!!! Praise the Lord!

July 16, 2011 Part 2

Please pray for Jackson his temperature got up to 104 degrees.  They have him on some meds and they seem to be helping.  I freaked out when I saw the temperature.  The doctor says it is normal for this kind of chemo. He is well drugged and sleeping.  Hopefully tomorrow he will feel better. 

July 16, 2011

Jackson did well yesterday.  They replaced his central line and did his spinal tap/chemo.  He was starving after they finally finished.  15 hours without eating is rough on a baby.  He ate 8 oz of pedialite and then ate 7 oz of formula 3 hours later.  They put us in a really small room until a big one becomes available.  Jackson is having a rough day today.  He spiked a fever due to the chemo and is so grumpy.  Please pray that he feels better soon.  The nurses made him a special hat to wear because chemo patients generally lose their hair (even though he still has his mohawk :-)  So here is a picture of him wearing it after surgery yesterday. 

July 14, 2011

Tomorrow we go back to the hospital for round 3.  The time at home with Jackson has been priceless.  You don't realize how important the little things are like being at home in the evening with your family or putting your baby to bed in his own crib until you don't have that anymore.  We report to the hospital at 6:15 tomorrow morning.  They will take blood and check counts.  They are assuming his counts will be good.  Unfortunately his central line does not work at all anymore, so they are going to replace it tomorrow.  They will also do a spinal tap while he is asleep and give him the first dose of chemo in his spine.  If all goes well they will start the continuous chemo tomorrow afternoon.  It feels like it has been forever with Jackson in the hospital but I know that it could be worse.  We are trying our best to have a good attitude and make the best of all situations.  When my  mom was here last week, we spent some time singing around the piano and we found this song that really encouraged us:

I trust in God wherever I may be
Upon the land or on the rolling sea
For come what may from day to day
My Heavenly Father watches over me
I trust in God I know He cares for me
On mountain bleak or on the stormy sea
Though billows roll
He keeps my soul
My Heavenly Father watches over me
He makes the rose an object of His care
He guides the eagle through the pathless air
And surely He remembers me
My Heavenly Father watches over me
I trust in God I know He cares for me
On mountain bleak or on the stormy sea
Though billows roll He keeps my soul
My Heavenly Father watches over me

July 1, 2011

We had our clinic appointment today.  They tried to get the line to work, but couldn't.  They got a small amount of TPA (a medicine that breaks up clots or blockage in the line) into the line, but still couldn't get it to flush.  Since he still has one working line, the doctor told us that it can wait until next chemo round, and that they might just use the one that is working and not replace the central line at all.  :-)  The doctor also told us that we get to spend an extra week at home.  Yeah!!!  So, his next appointment is July 15th.  We will see what his counts are then and they will probably admit him for round 3.  Thank you for praying, even though they couldn't get it to work the end result was a positive for us.  

June 30, 2011

Ok...so yesterday was not fun...We were told by the doctor to flush his central lines every other day while he is home.  So, last night we got everything out and the first line flushed great...the second line would not flush no matter what we did...so the doctor had told us if we have that problem to call the hospital immediately.  When I called I spoke to the Hematology doctor on call and explained to him what was going on.  I then asked him if it could wait until Friday at his clinic appointment. (Jackson is not on meds through his central line, so it wasn't an emergency.) He said no you have to come to the ER right away.  We arrived at the ER at 8 pm last night.  We waited in a room as nurse after nurse after doctor came in spoke a few words and left.  Finally at 2 am the nurse came in and said, "the doctor says this can wait until Friday's clinic appointment...WHAT?!?!?!?!  Didn't I just ask him that a few hours ago?  AHHH...so we arrived home at 3 am.  Poor Erik had to go to work on 2 hours of sleep.  So, tomorrow we go to our clinic appointment to try and get the central line to work.  If they can't get it to work they will have to replace it again. We really don't want that again.  Please pray that they will get it to work tomorrow. 

June 27, 2011

YEAH!!!! Doctor's gave Jackson the all clear to come home!!!! We are currently awaiting discharge orders and then Jackson is out of here!!! (at least until his next round)  We have to return on Friday for a clinic appointment, just to make sure that his blood counts are still coming up the way they should.  I am so excited to be able to spend some time at home with my precious little boy and with my mom.  It looks like it is going to be a great week! :-)  Thank you Lord, especially for the little things!

June 26, 2011

Jackson is doing well today.  His counts have come up some.  The doctor told us today that they took him off of antibiotics and are hoping that he will be able to come home tomorrow.  We are trying not to get our hopes up but are praying that it will work out.  The walls of the hospital are starting to close in on us! :-)  Jackson is very excited that his grandma Craven gets to come visit in 3 days!!!

June 22, 2011

Jackson is doing well today.  He is full of energy today and playing like he is making up for lost time. :-)  His counts are still low but are starting to go up slowly.  The doctor said today that it will probably be another week here...he could come home sooner if his counts really start to pick up.  Praying for a speedy blood count recovery.  His onesie fits his mood today...Tigger...bouncy bouncy...:-)

June 21, 2011

Jackson was on two antibiotics through the night (His fever went up to 102 in the middle of the night).  He will continue to be on antibiotics for the next couple of days. They seem to be helping because he is a different baby today.   He is still a little mellow but at least he isn't crying or fussy like yesterday.  I realized yesterday how spoiled I am with a happy baby.  I don't know what I would do if my baby cried all the time.  The doctor said his counts are status quo, not much difference.  The cultures they took yesterday are not growing anything yet, so they don't think it is an infection...just a result of low blood counts.  I am so thankful for medicines that make my baby feel better.  We really appreciate everyone's prayers. Thank you!

June 20, 2011

Today Jackson was very cranky...very unJackson like.   He is showing strong signs that he is teething.  I kept asking the nurse to come check his temperature because he felt so warm.  Jackson had a temperature of 101.  The nurses say this is to be expected because his counts are so low.  They took cultures of his lines to make sure that there is no infection and that the fever is due to counts.  They are going to give him Fortaz (an antibiotic) and some fluids to help with the fever.  Please pray that Jackson will feel better soon and be back to his normal happy self. 

June 19, 2011

Jackson is having a wonderful Father's Day with the best daddy in the world!!! (Alyssa is writing this :-) Jackson is doing ok today.  His counts are still low but no transfusions needed today.  We are all just having a great time hanging out together. 

June 16, 2011

Please pray that Jackson will eat more.  He is eating, but not as much as he normally does.  I still think it is because his blood counts are so low.  The nurses keep telling us to feed him as much as he will eat, and I think they are concerned too.  The doctor's tell us that this weekend is when Jackson is at the most risk to spike a fever, because that is when his blood counts will bottom out.   Jackson was visited by two occupational therapist this morning and seemed to really enjoy playing and practicing holding his body straight.  He really liked this toy...it lit up and played music...he was fascinated!!!

June 14, 2011

Jackson is having a good week so far.  He is active and happy.  Yesterday he had sweet potatoes for the first time.  The look on his face was priceless.  :-) His blood counts are dropping fast.  He has to bottom out before he can come up.  It has been nice being out of school so that I can spend more time with my baby!  I think he is going to cut a tooth soon.  He drools a lot now.  Jackson is so much fun to be around now that his little personality is coming out. 

June 10, 2010

Jackson had a rough day today.  His central line got a crack in it and it was not able to be fixed.  So the surgeon decided that the whole thing needed to be replaced.  So back to the operating room to get a new central line. For his surgery they had to put in an IV and again they had issues finding a vein. They stuck him 10 times and finally got one put in his head.   His blood counts were also very low which was to be expected and he received blood yesterday and platelets today.  He still greeted us with smiles and giggles. We got the ok from the nutritionist to start solid foods with him.  This will be interesting! :-)  Jackson enjoyed spending time with his Grandma Lundquist for the past week.  He is done with chemo for the second round but will remain in the hospital for the next couple of weeks as we ride the roller coaster of blood counts.   

June 7th, 2011

Jackson's past few days have calm and peaceful for the most part. June 1st and 2nd he received round 2 of chemo treatments and was released from the hospital as expected for 5 days. His appetite has decreased a little, but he still seems strong. This morning he was readmitted into the hospital for the follow up chemo treatments of this 2nd round. As commented in the earlier posts, He was to receive 1-3 days of chemo go home for 3-5 and return again for the next 3 days of chemo. He then will stay in the hospital for another 3 weeks minimum which again is followed by another break. After this round he only has 4 more rounds to go. His counts are down as expected. His platelet count during his break from round 1 of chemo to round 2 reached 400,000.( excellent number) (normal- 150-450 in thousands) Today his platelets are down to 74,000 and will progressively decrease through the next few weeks.  Through the past 5 days however,  Jackson has been able to enjoy sometime with his Grandma, who has been a wonderful help to Alyssa and I. God has given us a great blessing in Jackson, however He as also blessed us with so many others who have shown God's grace through their actions and words.

June 1, 2011

Well here we go...Round 2...Jackson was readmitted to the hospital yesterday.  His counts were all the way back up to normal so they can proceed with the second round.  The doctor's gave him one dose of chemo today and tomorrow he will get two kinds of chemo drugs.  If he doesn't spike a fever he will get to come home for a couple of days and then go back next Tuesday for the rest of his chemo.  Don't ask me why they do that...I asked and never really got a straight answer as to why he comes home during treatment.  Please pray that Jackson responds just as well to this treatment as he did with the last. 

May 27, 2011

We received a phone call today from our Doctor at Egleston.  She called to tell us that the bone marrow test they did on Wednesday came back GREAT!!!! The chemo is doing its job and she said that she is very pleased with the way his bone marrow looks.  The blast from earlier this month was just a recovery blast and that was confirmed by the bone marrow test!!!! Yeah!  I am so excited about tomorrow.  Some very sweet friends from my school in Bethlehem decided to do a car wash to raise money for us.  It started out as just a car wash but now they are selling food, face painting....there is going to be clowns...they had it advertised on two radio stations...there is a huge banner, people are wearing T-shirts with Jackson's picture on it...people and businesses from all over the county donated supplies for this.  We feel so blessed that so many people care about our baby, even ones that don't know us.  It will be awesome to see how God works tomorrow.  I hope to get lots of pictures to post!!!

May 25, 2011

Just wanted to give everyone an update on what happened today.  The bone marrow test went fine...he didn't sick today from being put to sleep.  We met with the doctor after the procedure and confirmed that his blood counts were improving.  They are expecting him to be readmitted May 31st for his second round of treatment.  This round is a little different.  He will have 3 days in the hospital with chemo, then he will go home for 3-4 days(for a break before the next set of chemo can take effect) and then go back for 3 more days of chemo and then he will stay for several weeks.  So far so good...thank you for your prayers and please continue to pray!

May 24, 2011

Please be in prayer for Jackson tomorrow.  He has to go in to the hospital for his bone marrow biopsy and spinal tap.  He tends to get sick to his stomach after being put to sleep. Also please pray that we will get some answers based on his blood work about when he will be readmitted.  Jackson sends out smiles and giggles to everyone!!!

May 21, 2011

Erik and I are enjoying our weekend at home and thankful that we don't have to drive to the hospital.  Jackson is doing well.   I still look at the baby monitor more times than I can count during the night...someday that may pass. :-)  We are looking forward to taking Jackson to church tomorrow!  

I'M HOME May 19, 2011

Round 1 Complete!!!!  Jackson is finally home from the hospital for a little while.  So happy!!!!  He is now playing on the floor with his toy and having a good old time. 
Prayer requests while he his at home:
1.  Pray he doesn't spike a fever.
2.  Pray that something doesn't happen to his central line.
3.  Pray that Jackson does not pull his central line out.  ( I know this is crazy, but the doctor says it has happened before.)
I only have 4 more days of work before summer break, and we are very thankful that someone has offered to stay with Jackson at home until I can be at home with him. 

"Every good and perfect thing is from ABOVE!!!"

May 18, 2011

We got GOOD news today!!!! Unless something changes, Jackson's counts have come up enough for him to go home tomorrow!!!!!! :-)  So we will go to the hospital after work tomorrow and bring him home.  He has to return to the hospital for a bone marrow biopsy next Wednesday the 25th.  They think he will probably be readmitted to the hospital on May 31st to start his second round of chemo, but as with everything else, it could change.  Thank you Lord!

May 17, 2011

Jackson had a good day today playing with friends from church!  His counts are all steadily going up.  His platelet count is up to 400,000 (normal is between 150,000 and 400,000), his Hemoglobin is at 9.2( normal is between10.5-13.5), and his white blood cells are at 2.66 (normal is between 6.0-17.0).  We are hoping that his counts will come up enough that he can come home this week.  Jackson also had a dressing change by mommy and daddy today.  Jackson is doing better at sitting up in his bumbo seat and he is still eating very well. 

May 16, 2011

On this Monday, Jackson continues to be the star of the show as the nurses tell us again that they seem to fight over him.  His smile, that lights up his whole face, draws a smile from those around him every time. His counts today came back better than yesterday. The blast that we were watching disappeared today. As we talked with the Dr. today, we were reassured that it was more than likely was a premature blood cell which is a recovery cell, however we will not know for certain till the 28th day after his chemo started. It is nice to come in and hear that his counts are up again and that the doctors are excited that he might be released soon, therefor round 1 of chemo would be complete. Yesterday he got to experience an interesting treat. The hospital did an event which involved the release of multiple butterflies. It was a nice sight to see.

May 15, 2011

Today we are in prayer.  Jackson's counts came back today with 1% blasts.  The blasts should all be gone due to chemo.  The doctor on call says it could be a leukemia blast (bad) or it could be recovery blast (good).  They will watch over the next couple of days to see if he gets more or if they go away on their own.  The doctor says that the best way to see if it is truly leukemia cells is through the bone marrow biopsy that they will do on day 28 of treatment (that would be around Monday, May 23).  If it is leukemia cells they would have to change Jackson's treatment to something more aggressive because it would mean that the treatment they are giving him now is not working.  So now we play the waiting game, and see what happens.  Please be in prayer with us.

Jackson's shirt today says..."Brave as a Lion"...which is what we are all trying to be.

May 14, 2011

Today is a special day because we get to spend all day with Jackson instead of just a couple hours.  We went out into the garden and sat on a bench under the shade and just relaxed for about a half an hour.  Jackson took in the fresh air and green trees.  He seems very calm and content today.  His platelets are up to 174, 000 and his other counts are up a tiny bit.  Hopefully they will keep going up so he can go home...we shall see.  We are looking forward to that day! 

May 13, 2011

Sorry it has been a couple of days...the blog's website was down and we were not able to log in.  Jackson is doing well.  Yesterday morning he had a bone marrow biopsy.  The anesthesia made Jackson a little sick to his tummy yesterday and he was very tired.  Today he is doing much better.  We just got finished talking to our Doctor and she is very pleased with his bone marrow results.  Jackson's counts are also going up.  His platelets are up to 100,000 which is the first sign that his own bone marrow is starting to work correctly again on its own.  There is a possibility if things continue to go well that he could come home early next week.  Then he would have a 1-2 week break (with a few clinic visits in between) at home before returning for round 2.  Erik and I have been amazed at the response we have had from friends and family about the wristbands.  We have such wonderful friends and family who have been selling selling selling to help us out!  We will now have Jackson Leukemia bands all over the country supporting our little trooper. 

For the LORD thy God will hold they right hand, saying unto thee, Fear not; I will help thee. 
Isaiah 41:13

Reminder Bands

Erik and I were given this idea from a sweet lady we met in the hospital.  They purchased these reminder bands and had them personalized.  Then they sold them for more than they paid and put the money they made aside to pay for hospital bills, gas money, food...and so on.  Leukemia's color is orange.  We ordered a bunch and had them made to say "God still works miracles!"  We are selling them for $5.  If you would like one please let us know by sending us an e-mail at eapclundquist@comcast.net or send us message on facebook.  :-)