Thank You

Words cannot express our gratitude.  Every parent hopes to see their child grow and experience all that life has to offer.  Every parent hopes that their child is loved by everyone.  Every parent hopes that everyone who meets their child loves them as much as they do.  I realize that this is not always true, but can honestly say that I know that Micah was loved much.  It was amazing to see just how many people loved Micah and it truly warmed my heart to know how many lives Micah touched.

Thank you to everyone for coming out to support James and I over the weekend.  We have loved Micah since we first saw him on the ultrasound screen.  After sixteen months of life I could have never imagined how many people would have loved him!  It truly makes me speechless.  All I have left is to say that we are truly blessed.

And a special thank you to everyone who came out last night to support Micah at our first Light The Night walk.  The rain held off for the several hours we were there and the event was wonderful.  It was truly amazing to see the sea of orange shirts and incredibly humbling to see Micah’s smiling face everywhere I looked.  Again for that, I am thankful!  

Light The Night

If you are planning to join us on Sunday night to celebrate Micah’s life at Light The Night, please arrive by 5:45pm.  We will be meeting for a TEAM MICAH picture at 5:55pm under the balloon arch.  There will be festivities until the walk begins at 7pm including food and activities for kids. This will also give you plenty of time to pick up your illuminated balloon and if you raised at least $100 your t-shirt.

Click on the link below to view a map of the walk site.  You’ll find our TEAM MICAH tent in blue.  http://www.lightthenight.org/chapter/il/doc/northshoremapteams

Please look for us in the TEAM MICAH tent and remember to wear ORANGE!!

Micah’s Service info.

Friday, September 23rd; 5:00 - 8:00 P.M. Visitation @ Warren Funeral Home, 1475 N. Cemetery Rd., Gurnee, IL 60031

Saturday, September 24th; 9:00 A.M. Visitation @ Bethel Lutheran Church, 5110 Grand Ave., Gurnee, IL 60031

Saturday, September 24th; 10:00 A.M. Funeral @ Bethel Lutheran Church with interment immediately following @ Highland Cemetery, 33100 N Hunt Club Rd., Libertyville, IL 60048

All are welcome to help us celebrate Micah’s life.

Heaven’s New Angel

As I lay at home in bed this evening, I am at a loss for what to say, do, think, feel, and type.  This afternoon Micah’s body could fight no longer.  He spent the last ten months battling Leukemia with such strength and unrelenting energy.  I am hopeful that over the next week I am able to type some happy memories.  Right now, though, all I can say is that Micah’s last evening was not full of pain.  We had finally gotten his pain under control and he no longer needed to yell at us to figure it out!  He slept probably better than he had in a long time, which isn’t to say that he had a good night.  Last night Micah’s breathing became the issue.  Several of his organs began showing signs of leukemic presence.  Several of his treatments had been altered.  And early this morning, Micah’s feeds were stopped.  James and I spent the morning sitting with Micah.  We talked to him and even did some arts and crafts with him!  We took one last family picture and Micah’s body finally said that it had had enough.

Tonight as James and I lay in bed at home, Micah is laying in heaven with God the Father.  We could only imagine that he was greeted by loving family members with open arms.  And, knowing Micah as we do, we can only imagine that he blew kisses to everyone!  I keep telling myself that Micah is smiling down at us blowing me his bedtime kisses.  I pray for half the strength that Micah has shown.  I pray that he is at peace and that we can rest knowing that he has arrived safely to his new home.

Overwhelming

Thank you to everyone who donated over the past few days.  Who would have thought that the incentive of Cubs tickets would have raised so much money!!  We are so thankful and humbled by the support.  It is with a heavy heart that I am writing today’s post.  

We are back in the hospital and have been since late Thursday evening, early Friday morning.  Micah’s pain again grew out of control on Thursday evening.  After adjusting some pain medication and seeing no change, James and I again decided to bring him back to the hospital.  This time it took an increased dose of pain medication to get Micah’s pain under control.  Yesterday morning we finally got the pain under control and Micah spent the rest of the day basically sedated.  Around 9pm, he began to stir and proceeded to have another pretty crummy evening.  He was up several times and was maxed out on his pain medication.  This morning we met with the various doctors during rounds to discuss the new changes that need to be made.

In addition to having to figure out where his pain is coming from, which we think is neurological, Micah is starting to have some liver problems.  After yesterday’s lab work, the doctors noticed a very elevated liver count.  This could be accounting for some of the pain, but it is most likely not as severe as the neurological pain.  The neurological pain is likely due to an increase in leukemia cells present in Micah’s central nervous system fluid.  Unfortunately there isn’t much we can do about those cells anymore.  Trying to find a pain medication is proving to be very challenging.

Since we are still working today to get Micah’s pain under control, the doctors have told us that a discharge in time for tomorrow’s Cubs game is no longer in our cards.  We obviously are disappointed that we won’t be able to take Micah to Wrigley Field, and are so grateful for everyone’s help that made that possible…but ultimately Micah is more important than anything.  Micah’s pain is our number one priority right now and making sure that we can help him manage that is more important that ANYTHING!

Please continue to keep Micah in your prayers.  It has again amazed me over the past few days the number of lives that Micah continues to touch.  It is my hope that you all know how much that means to us.  Micah is our little angel and that he brings some smile to your faces is priceless.

Cubs Tickets

One of the many things that James and I were looking forward to doing with Micah was taking him to a Cubs game at Wrigley Field.  It became very unlikely over the past few weeks that we would be able to take Micah to a game.  Even if we got tickets, with his medical supplies and current immune system he could not sit amongst the fans!  Through the GENEROSITY of so many people, Micah has been given the opportunity to go to a Cubs game…in a SkyBox!!  And not just that, but two different groups of people offered us tickets.  With this weekend’s developments, we are hoping to get to at least one of the games, but certainly won’t be able to go twice.

So…we are offering the other game as an incentive.  We have three skybox tickets and a parking pass for this Saturday’s game vs the Houston Astros.  James and I thought that we would give them to the person who raises the most money on Micah’s Light The Night page within the next two days.  We will check totals on Friday to see who raised the most money!  The walk is quickly approaching and we are very close to our team goal.  Hopefully this will help!  Let us know if you have any questions.

Pain Management

Yesterday evening Micah was in more pain than we could control at home.  After talking with the doctors we increased some of the pain medications we had at home, even adding one.  It just wasn’t enough though.  At midnight we decided that we needed to bring him up to Milwaukee for stronger pain medications that would go through his IV.  This morning when we got here at 1am, the doctors started an IV pain medication that made no impact on Micah’s pain.  A head CT was scheduled due to Micah’s history of leukemia in his spinal fluid.  Micah was then given a sedative that finally calmed him.  At 3am, the doctor called us from home to tell us the not-so-good news.  The CT showed that Micah had two pockets of fluid in his head.  Without surgery, there is no way to know for sure if the fluid is a build up of leukemic cells or bleeding.  It was then a discussion of pros and cons of doing the surgery.  If the fluid is leukemic cells, draining it would provide a temporary solution, but it will return.  As the day progressed, the doctors are leaning toward the fluid being leukemic rather than blood.  Micah’s blood work from this morning helped show that it is not likely that the fluid is a bleed.  His blood work also showed that his peripheral leukemic cell count is increasing rapidly.  Micah has a very aggressive form of leukemia.  What we thought would have been 1-3 months is now no more than a couple of weeks.

James and I were just adjusting to the knowledge that we were not going to have a lifetime with Micah.  We have been trying to wrap our heads around not getting to do so much with our son.  Today’s news made that ever changing reality even more real.  Now we are hoping to simply get to take Micah home for a couple of days.  Micah was put back on a PCA pump which is a continuous dose of pain narcotics with a button for us to push if he is in need of an additional boost of pain medication.  We’ve pushed the button three times already today and he’s only been on the pump for a little over 12 hours.

The thought of my son being in pain is very difficult.  We are trying to balance keep Micah comfortable with keeping him conscious enough to see a few more smiles.  I am beginning to think that the smiles are quickly disappearing.  The waves and kisses are fading.  Micah is going to continue to require more and more pain medication as the leukemia progresses and causes more and more pain.

Right now we are hopeful for a couple of days at home where Micah can enjoy his swing one more time.  Where Micah can get one more kiss from Bailey.  Where I can rock him just one more time in his chair and tell him I love him a million more times!  Please pray that we get as much time as God has planned for Micah and that the time is as painless as we can offer.  

My little angel is continuing to fight his hardest!!  Please pray that he can fight just a little longer!

Care Calendar update

We’ve updated the care calendar for dinner needs through our fall semester. To help by signing up for dinners for the Silasiri family please follow these steps.

1. Click on the care calendar link in left margin on our page or cut and paste http://www.carecalendar.org/?cid=57462 

2. Our new security code is Micah. It is case sensitive.

Thank you all for your continued support.

Bad News

Four weeks after coming home, James and I took Micah back to Children’s yesterday for a bone marrow biopsy.  We did this because at Micah’s regular appointment Thursday, the doctors found some abnormal blood cells.  Yesterday they confirmed our worst fear - Micah’s leukemia has returned.  Right now his bone marrow shows 5% leukemic blasts and his central nervous system fluid has a count of 25.  Both of these numbers should be zero.  Micah’s body is losing the fight and we are going to lose him.  As I type this, the tears can’t be stopped and I fear that they won’t stop for quite some time.  James and I are trying to focus on doing as many of the things we’d dreamed of doing with Micah in the short time we have left with him.  The doctor said we have somewhere between 1-3 months during which time Micah’s pain level will just increase.  I hope to be strong enough to write more later, but for now, please pray that Micah can smile, laugh, giggle, learn to walk, and learn to say dada!  Big requests, I know.