Friday, May 27, 2011

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!!!

Wednesday, May 25, 2011

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!

Tuesday, May 24, 2011

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!!!

Saturday, May 21, 2011

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!  

Thursday, May 19, 2011

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!!!"

Wednesday, May 18, 2011

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!

Tuesday, May 17, 2011

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. 

Monday, May 16, 2011

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.

Sunday, May 15, 2011

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.

Saturday, May 14, 2011

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! 

Friday, May 13, 2011

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

Tuesday, May 10, 2011

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.  :-)

May 10, 2011

Erik and I really enjoy spending time with our son...God knew that we needed a happy sweet baby, because he just lifts our spirits.  Jackson's counts are still bouncing around in the low range.  They are supposed to do another bone marrow biopsy sometime in the next day or so.  Erik and I had a 2 hour training session today.  We were taught how to change the dressing around his central line, how to change the ends, how to clean it, and how to flush the lines.  One of these days someone is going to give us an honorary medical degree. :-)  It was a lot to learn but Erik and I are used to learning this kind of stuff and we work well together remembering things and getting it done. 

Sunday, May 8, 2011

May 8, 2011

On this Mother's Day I am so blessed to be Jackson's mommy.  Erik and I got to go to church this morning and it was so encouraging to be with our church family.  We are enjoying spending the rest of the day with our sweet boy.  Jackson's blood counts are up today a little because of the transfusions yesterday.  He is alert and playing with his toys.

1 Corinthians 13:7
Love... Beareth all things, believeth all things, hopeth all things, endureth all things.

Saturday, May 7, 2011

Beads of Courage

These are Jackson's Beads of Courage.  He started receiving these when he was in the hospital for his heart and now he is continuing to get them due to his Leukemia.  This is a program that they have started to encourage kids as they go through treatment and trials.  They receive a bead for everything they have had to endure in the hospital.  Below the picture I have listed what some of the beads stand for.  (This is what Jackson has earned so far :-)

Black: Pokes/sticks/blood draws
Yellow: Nights in the hospital
White: Chemo
Red: Transfusions
Glow in the dark: EKG/Echo/x-ray/MRI
Blue: Clinic visits
Orange: central line/port
Beige: Bone marrow
Grey/Silver: Dressing Change
Green: Fever
Rainbow: Physical Therapy/Occupational Therapist
Aqua: Tube insertions
Purple: Antibiotics
Square Heart: heart surgery(our favorite)
Bumpy beads: challenges
Stars: NICU/CICU

May 7, 2011

We were blessed with another day of Jackson's smiles!!!  He is still eating well and has not had to have IV fluids.  We were able to take another walk with him today around the hospital.  His blood counts today were very low.  Jackson had to have a platelet transfusion this morning because his platelets fell below 10,000 (a healthy persons is about 150,000+).  This was expected at this point in his treatment.  This causes him to be more tired than usual.  He also had a blood transfusion because his hemoglobin was low.  The nurses are still loving all over him.  When we walk the halls people stop and smile at him.  He is a precious little man and an inspiration to his mommy and daddy. 



Friday, May 6, 2011

May 6, 2011

Jackson is very tired today...His blood counts are very low, which explains the tiredness...He still managed a weak smile for his mommy and daddy.  His platelet count is almost to the point where he would need a platelet transfusion.  We shall see.  Jackson had a very nice week visiting with people from our church.  I am so grateful that someone was available to love on our baby when we so desperately want to be here and can't.  Jackson is still eating pretty well.  We are very thankful for that.  We were asked to have Jackson be a part of a study about Leukemia.  Doctors are trying to figure out why Down Syndrome babies recover better than other children.  The doctors will use some of his bone marrow and spinal fluid to use for research...very cool!

Jackson's Journey Video

video

Thursday, May 5, 2011

May 5, 2011

Jackson is 7 months old today and becoming a ladies man!...:-)  He has so many ladies looking after him.  Today Jackson was taken off of Zofran (nausea medication) and IV fluids.  He has been eating very well today.  He looks really pale to me (I know he is already pale)  and I don't think he feels very well.  He is really mellow and tired.  His counts are down today farther then they were yesterday, which was to be expected.  He might have to have a blood transfusion or a platelet transfusion in the next day or two.






Wednesday, May 4, 2011

May 4, 2011

The news that Jackson has Leukemia was not a shocker to Erik and I, they had been closely monitoring Jackson's blood since he was born.  Jackson was at high risk for Leukemia due to his Down Syndrome.  He had a 30% chance of developing it.  The doctors are very positive none the less.  Apparently Down Syndrome children have a higher % of recovering completely than other children. (80% compared 50%).  We were told that Jackson would have to undergo 6 rounds of chemo.  Each Chemo would last somewhere from 4-9 days and then he would have to remain in the hospital for a couple of weeks after until his blood counts come back up.  We were admitted to Childrens of Egleston on Sunday April 24th.  On April 26th Jackson was given a central line, a bone marrow test, and spinal tap.  When they did the spinal tap they gave him his first dose of Chemo.  He then started continuous chemo through his Central line on April 27th.  Jackson successfully completed his first round of chemo on Sunday, May 1.  We are now playing the waiting game.  Every morning they take some of Jackson's blood and run his counts.  Thankfully they put in the central line so I don't have to see him cry in pain every time he is stuck.  His blood counts have to be up and stay up for so many consecutive days before he can come home.  We were told 2-3 weeks.  It is amazing how well Jackson has done so far.  He is still the happy smiling baby we have grown to love.  He makes us so proud!  Since we have been here the past week and a half, Jackson has learned to hold his bottle while he eats.  :-)  Erik and I are blessed to have a church family who cares so much about us.  This week while we had to go to work, people from our church volunteered to come and sit and hold Jackson at the hospital.  What a relief to our hearts that Jackson wasn't alone.  Jackson now weighs 13.1 pounds and he is still eating!!! Praise the Lord!

The begining until now

Jackson Scott Lundquist was born on October 5th, 2010 in Athens, Ga. He spent his first week in the NICU and went home the 8th day. He then was admitted to Childrens Hospital of Atlanta Egleston for Heart Failure which was expected due to his Down Syndrome. After 8 more days of getting the heart failure under control he went home and enjoyed his time at home for 4 months. He then was admitted to Childrens for open heart surgery on February 1st, 2011. After a successful fix of his heart he went home again 4 days later. He recovered well for the next few weeks.  Jackson was unfortunately readmitted to Childrens again on April 24th, 2011 due to his diagnosis of Acute Myeloid Leukemia.  This is where this story continues...