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Tuesday, June 17, 2014

June 16th Update!

Two months ago we weren't sure if Colton would ever get the chance to be a normal kid again. We lived in a secluded world of fear and hand sanitizer, not knowing what each day would bring. We were forced to live our lives minute by minute, only motivated by the hope that he would slowly improve. Amazingly, in the last two months we have seen a major change in his attitude and appearance. Colton now seems to be back to his old self 100% -- he is full of energy -- at times too much! We felt confident enough in his health to take him to Lagoon on Saturday for USANA’s company party. All of his cousins were able to join us and he had an absolute blast riding rides, playing games and being the center of attention! He had a dermatology appointment yesterday to check on his eczema, so we decided we may as well do a CBC while we were there. Although the results weren't as great we were hoping for, his platelets and RBC’s have continued to maintain themselves in normal levels with only the WBC’s staying low. He hasn’t been sick or had any fevers, so we are hopeful that he’s having the correct response to illness when necessary and keeping our fingers crossed that the WBC’s will slowly recover too.
Stats From Yesterday's Visit
  • White Blood Count (WBC) - 4.0 (normal range is 6.0 to 17.0)
  • Absolute Neutrophil Count (ANC) - .64 (normal range is above 1.5)
  • Platelets - 251 (normal range is 150 to 400)
  • Hemoglobin (HGB) - 12.6 (normal range is 11.5 to 13.5)
  • Hematocrit (HCT) - 35.8 (normal range is 34.0 to 40.0)
  • Red Blood Count (RBC) - 5.05 (normal range is 3.9 to 5.3

Tuesday, June 10, 2014

Colton's 'Blocks of Love' Quilt is Done!!!

Tonight we were given a priceless gift for Colton that we will treasure forever -- his "blocks of love" hospital blanket made of hand made squares by our friends and family. We are overwhelmed with the amount of love and support that has been shown to us and especially Colton during this difficult time. We feel so blessed that Colton is here and healthy enough to enjoy life again. We have been thrown into something we could have never imagined going through, but we will continue to fight this battle. Thank you all for helping us get through this and for all your hard work on the blanket! He absolutely loved it!!




We also want to give a HUGE thank you to Dan's sister Bonnie for coordinating all the squares, getting them sent out, and collecting all of them. There is no way this would have happened without all her hard work. Also a HUGE thank you to my Mom, Carole, for getting the border/backing and sewing all the squares together, which was a big undertaking -- we couldn't have done it without her. It was quite the project, but it will make a special keepsake for Colton. The blanket is so meaningful to our family and we really appreciate all the time Bonnie/Carole and everyone who completed squares put into it! THANK YOU!

Wednesday, May 7, 2014

May 7th Update!

WOW! We can't tell you what a relief it is to get good news 3 weeks in a row!  Although, Colton's white blood cells are still low, his red blood cells and platelets are both maintaining themselves at normal levels. This is huge since he has never maintained his counts for this long and it gives us hope that his body has, and is, recovering on its own. As is always the case with white blood cells being low, we still need to be cautious of germs and will need to go to the hospital for any fevers. With that being said, we have decided to slowly start exposing him to a normal life again  -- taking him out to spend time with his cousins, friends, grandparents, etc.  He has been loving life lately, he has been able to get out and play,  and truthfully,  loves not being stuck in the house with us 24/7!  Colton actually doesn't have to go to the hospital to have his blood taken for 2 months...unless of course we notice any changes . We have been to Primary's at least every other week for the past 8 months, it will feel weird not driving up there for that amount of time!  He also doesn't have to go back into clinic for 3 months! We are so thrilled and hope his recovery continues!  We have to remember this could change at any time, but for now we are celebrating the wonderful news and looking forward to getting back to a "normal" life.
Stats From Today's Visit
  • White Blood Count (WBC) - 3.9 (normal range is 6.0 to 17.0)
  • Absolute Neutrophil Count (ANC) - .2 (normal range is above 1.5)
  • Platelets - 324 (normal range is 150 to 400)
  • Hemoglobin (HGB) - 11.9 (normal range is 11.5 to 13.5)
  • Hematocrit (HCT) - 34.3 (normal range is 34.0 to 40.0)
  • Red Blood Count (RBC) - 4.63 (normal range is 3.9 to 5.3)

Although Ryan is the   best Phlebotomist, we are so happy we don't have to see him for 2 months!

Showing off his poke

This is Dr. Staddon - he has been with us since the beginning and is an amazing hematology/oncology doctor!  Unfortunately, this was our last visit with him, as his fellowship has ended and he will now be an attending physician in Michigan. We are so grateful for all time and research he has put into Colton.

Friday, April 25, 2014

St. George, Easter & 9 Months!

It's crazy to think we have been on this journey for the past 9 months. That's at least one (usually more) poke a week for 39 weeks, which makes for one TOUGH boy! Although it's still a daily struggle, we are beyond grateful for each and every moment we get with Colton and so thankful for all the love and support from our family and friends.  Overall, things seem to be looking up.  We celebrated Easter with our family last weekend and we were able to take Colton to Easter Egg hunt with his cousins.  Yesterday's results seemed to have confirmed this as the doctors were extremely happy with Colton's counts.  His platelets and red blood cells are back in normal ranges and have maintained themselves for an extended period of time. Although this doesn't mean he's recovered, at least it feels like we can begin to breathe again. His tests from yesterday also confirmed, at least for now, his body is no longer hemolyzing his red blood cells.  This is huge news and so exciting because he's currently not producing the antibody against his red blood cells. On the flip side, his white blood cells are still low and the doctors are running some more tests to figure out if it is an antibody (destruction) or production problem. We should have those results on Friday. Of course we know things can change at any minute but for now we will embrace the good news!

Since, the doctors had to run a bunch of tests on his blood yesterday, he had to have a vein poke. He didn't like it much, but he is always such a tough boy. We also lucked out and were able to have Ryan draw his blood.

Colton and Mommy went on a date trip to St. George for a long weekend. Colton had a blast swimming, hiking, playing at the splash pad, taking lots of walks, playing in the sand, catching fish and being the center of attention

Colton is still house bound since his ANC is so low, but we did make an exception to celebrate Easter with all his cousins, which made for one extremely happy boy.

The plan going forward is to continue to watch him for any changes or fevers and have him checked again in 2 weeks! Yah for another week off with no pokes!

Stats From Wednesday's Visit (April 23rd):
  • White Blood Count (WBC) - 4.5 (normal range is 6.0 to 17.0)
  • Absolute Neutrophil Count (ANC) - .6 (normal range is above 1.5)
  • Platelets - 189 (normal range is 150 to 400)
  • Hemoglobin (HGB) - 11.7 (normal range is 11.5 to 13.5)
  • Hematocrit (HCT) - 34.6 (normal range is 34.0 to 40.0)
  • Red Blood Count (RBC) - 4.43 (normal range is 3.9 to 5.3)

Trip to St. George

Easter With Cousins

Sometimes Uncle Brant Comes To Visit When We Are At The Hospital

Happy Boy After The Hospital

Showing Off His Poke

Thursday, April 10, 2014

April 9th Clinic & Allergic Reaction

Colton had another week of ups and downs.  He went in for his weekly CBC on Wednesday and his results came back really positive!  His WBC and ANC were down a little, but everything else was either right around or within normal range.  And he gets next week off!  Earlier in the week, however, Colton got a rash, which the doctors determined was hand, foot and mouth disease.  His symptoms were pretty mild, but still not fun.  He also had a bad allergic reaction to something in the backyard :(
Stats From Wednesday's Visit:
  • White Blood Count (WBC) - 4.8 (normal range is 6.0 to 17.0)
  • Absolute Neutrophil Count (ANC) - .7 (normal range is above 1.5)
  • Platelets - 191 (normal range is 150 to 400)
  • Hemoglobin (HGB) - 11.2 (normal range is 11.5 to 13.5)
  • Hematocrit (HCT) - 33.0 (normal range is 34.0 to 40.0)
  • Red Blood Count (RBC) - 4.3 (normal range is 3.9 to 5.3)
Loving riding his bike after some good blood results!
 Not happy during his allergic reaction :(

Feeling a little better :)

Sunday, April 6, 2014

Unexpected Trip to the Hospital & Quilt Update

Colton was throwing up all Thursday night.  It gave both Dan and me a heart attack because the last time he threw up it was all blood (during his life threatening GI bleed).  It brought back a lot of horrible memories and emotions.  On Friday morning we thought he may have just caught a bug and was on his road to recovery until he came down with a fever.  Any fever with a low ANC means a trip to the hospital.  Thankfully the doctors didn't make us go to the ER.  They told us to get blood counts and, based on those results, would decide if he needed to be admitted.  If so, they would just do a direct admission.  Given how bad Colton looked and acted, we thought he would for sure get admitted.  To our surprise his counts were actually awesome and his body was having the correct response to fighting a fever!  We were sent home and he bounced back to his normal self the next day.  So much for getting a week off though :(

Although we received good news this week, we know all too well how quickly things can change.  We are trying not to have high expectations for next week.  Colton's blood pressure continues to be high.

Almost all of the quilt squares are completed and they are looking dang cute -- at least that's what everyone says (I'm not looking until the quilt is done)!  If you would like to participate, there's still time!  Check out the 'Making a Blanket for Colton!' post for details.

(Awesome) Stats From Friday's Visit:
  • White Blood Count (WBC) - 6.3 (normal range is 6.0 to 17.0)
  • Absolute Neutrophil Count (ANC) - 4.63 (normal range is above 1.5)
  • Platelets - 64 (normal range is 150 to 400)
  • Hemoglobin (HGB) - 11.3 (normal range is 11.5 to 13.5)
  • Hematocrit (HCT) - 34.2 (normal range is 34.0 to 40.0)
  • Red Blood Count (RBC) - 4.1 (normal range is 3.9 to 5.3)
  • Mean Corpuscular Volume (MCV) - 83.4 (normal range is 75.0 to 87.0)
Feeling Sick at the Hospital
 Colton fell asleep waiting for the blood results

Thursday, April 3, 2014

Hemolization & Week Off!

Colton's doctors let him have the week off, so no pokes!  Hooray!  Although Colton still asks daily if he can go to the hospital....goofball!

Colton's stool test came back negative for blood, which means he does not have internal bleeding. We will take that as good news :-)  Given those results, Colton's doctors suspect he has low hemoglobin because his body is producing antibodies that continue to hemolyze (destroy) his red blood cells (RBC's) through an autoimmune process.  However, when you hemolyze your cells, a byproduct is a release of bilirubin.  The doctors are a bit perplexed why Colton's bilirubin has remained normal and is not elevated. 

To make things more complex, another indicator of hemolization is low haptoglobin (a protein), which they have seen drop significantly, indicating hemolysis...a complete contradiction to the bilirubin.  In addition, his reticulocyte count (immature red blood cells) is 9x normal, so his body is producing new RBC's at a very high rate to compensate for the loss. The doctors just don't know where the loss is occurring yet.

The doctors were able to determine Colton has low iron in his RBC's, so we have started an iron supplement to help maintain good healthy cells.

Colton had high blood pressure the past few times he was tested.  He went in last Friday to have it checked.

Enjoying his week off playing with his brother!