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Friday, March 28, 2014

The Waiting Continues: March 26th Clinic Visit

It seemed that Wednesday's clinic visit was all positive, although Dan and I had completely different emotions and takes on it.  The doctors are still playing the watchful waiting game in hopes that Colton's body will recover on its own.  They did set limits on when they will treat Colton: if platelets drop below 20 and if ANC stays at 100-200 for a period of time.  The doctors are thinking Colton may be losing red blood cells from bleeding as opposed to antibodies.  They are running several panels to figure out if that is the case.

I felt extremely frustrated after clinic because we still have no answers and no plan. It's stressful living in limbo. Dan, on the other hand, thought the results were ok and was fine with waiting.  While we don't want to treat unless we have to, it feels like we are doing nothing to fix the problem.  This is typical with autoimmune disorders.

Colton had his first poke by Ryan, our favorite phlebotomist, but when we met with the doctors they wanted to run more tests.  So Colton was poked again.  The second one clotted, so he had be poked a third time :(

The doctors took Dan with them to look at Colton's blood smear. They said he was the first person they have ever taken back with them, but that he had earned it because he has learned so much about it. I guess all his research is paying off!
 
Stats From Today's Visit:
  • White Blood Count (WBC) - 3.8 (normal range is 6.0 to 17.0)
  • Absolute Neutrophil Count (ANC) - .5 (normal range is above 1.5)
  • Platelets - 62 (normal range is 150 to 700)
  • Hemoglobin (HGB) - 9.8 (normal range is 11.5 to 13.5)
  • Hematocrit (HCT) - 30.0 (normal range is 34.0 to 40.0)
  • Red Blood Count (RBC) - 3.53 (normal range is 3.9 to 5.3)
  • Mean Corpuscular Volume (MCV) - 86.1 (normal range is 75.0 to 87.0)
First poke!
 
All the blood tests the doctors ran. He looks a little too happy about having to get poked again!

 
Showing off his other two pokes (vein pokes)!
 

Wednesday, March 19, 2014

Highs and Lows: St. George Trip and March 19th Clinic Visit

St. George Trip 

After almost four months of being isolated at home, Colton's doctors approved him to leave the valley for a few days.  Colton was in heaven; he swam, played in the sand, went fishing, took lots of walks, caught lizards and played with his little brother.  His mood improved and, for the first time in months, we finally saw a glimpse of our sweet, happy boy. His smile says it all.

 
March 19th Clinic Visit

Colton had his blood drawn today and, disappointingly, all three cell lines went down.  It looks like we are just playing the waiting game again, which is very frustrating.  Since Colton's ANC is 500, we have to go to the ER for any fevers.  Since his platelets are low, we have to be careful he doesn't hit his head.  And since red blood cells are low, we have to watch for loss of energy.  The doctors are running a retic count to make sure his body is still producing red blood cells. Unfortunately it was a bad day with no answers.  We will meet with Colton's doctors next Wednesday and decide on a plan for his treatment.
 
Stats From Today's Visit:
  • White Blood Count (WBC) - 3.6 (normal range is 6.0 to 17.0)
  • Absolute Neutrophil Count (ANC) - .5 (normal range is above 1.5)
  • Platelets - 50 (normal range is 150 to 700)
  • Hemoglobin (HGB) - 8.3 (normal range is 11.5 to 13.5)
  • Hematocrit (HCT) - 27.0 (normal range is 34.0 to 40.0)
  • Red Blood Count (RBC) - 3.03 (normal range is 3.9 to 5.3)
  • Mean Corpuscular Volume (MCV) - 89.1 (normal range is 75.0 to 87.0)
Colton had his blood drawn by his favorite phlebotomist, Ryan, today!  Only one poke!


Wednesday, March 12, 2014

Colton's March 12th Clinic Visit

 
Colton had his blood tested today and the counts were similar to last week.  His doctors have decided that a proactive approach may be best and Colton will probably start some sort of treatment after he gets over his cold.  This may be as soon as next week.
 
Stats From Today's Visit:
  • White Blood Count (WBC) - 5.1 (normal range is 6.0 to 17.0)
  • Absolute Neutrophil Count (ANC) - 1.3 (normal range is above 1.5)
  • Platelets - 242 (normal range is 150 to 700)
  • Hemoglobin (HGB) - 8.5 (normal range is 11.5 to 13.5)
  • Hematocrit (HCT) - 26.6 (normal range is 34.0 to 40.0)
  • Red Blood Count (RBC) - 3.15 (normal range is 3.9 to 5.3)
  • Mean Corpuscular Volume (MCV) - 84.4 (normal range is 75.0 to 87.0)
Colton showing which finger he wanted poked!  He had three pokes today because of clotting :(
 

Thursday, March 6, 2014

Making a Blanket for Colton!

We're making a blanket for Colton and need your help

Here's how it works: we'll get fabric squares and distribute them (and fabric markers) to everyone who is interested in writing a note on one to Colton.  We'll then collect them and sew them together to make an awesome blanket!  He'll be surrounded by love when he cuddles in it!  Just email Bonnie at bonnie.garrick@mail.com to let her know you'd like a square and we'll get one out to you ASAP :) 

Thanks for your help in creating this special gift for Colton!

Wednesday, March 5, 2014

March 4th ER Visit

Unfortunately Colton had to go back to Primary's last night.  Since his ANC is below 1000, a temperature above 100.4 requires a trip to the ER.  Colton's first IV line went bad, so he had to get a second one.  He also got another finger poke.  Ouch!  He sure is a tough boy!  After waiting for four hours, the blood tests came back ok and Colton was sent home.  One of the ER pharmacists provided some good information on Colton's potential chemo treatment. 
 
Keeping Colton Busy for Four Hours! 
 



Monday, March 3, 2014

Colton's March 3rd Clinic Visit

Colton had his blood tested today and received positive results!  His ANC, or absolute neutrophil count, jumped from 200 to 700.  Neutrophils are a type of white blood cell that fight against infection.  Although 700 is still low, as ANC should be above 1500, it does get him above neutropenia, or the critical level.  In addition, Colton's platelets jumped to 393!  Normal range is between 150 and 400.  When he was hospitalized in January, Colton's platelets were at a 1.  This is the highest they have ever been!  Colton's doctor wants to continue to watch him and he will have his blood tested again next week.  Although the doctor stressed that Colton's counts may drop next week, it's great to see them trending upwards!  Other stats from today's visit:
  • White Blood Count (WBC) - 3.7 (normal range is 6.0 to 17.0)
  • Hemoglobin (HGB) - 9.7 (normal range is 11.5 to 13.5)
  • Hematocrit (HCT) - 29.8 (normal range is 34.0 to 40.0)
  • Red Blood Count (RBC) - 3.49 (normal range is 3.9 to 5.3)
  • Mean corpuscular volume (MCV) - 85.4 (normal range is 75.0 to 87.0)
Cute Pics from Today's Visit!



Sunday, March 2, 2014

Colton's Full Story

When we took Colton to the ER in August of 2013, we had no idea how much our lives were about to change. Colton had been acting lethargic the day before and his color looked pale. We had taken him to Instacare where we were sent home and told to just watch him.  The next day we ended up at Primary's ER and Colton was diagnosed at the time with auto immune hemolytic anemia and required a blood transfusion. After several days in the hospital, Colton's hemoglobin counts were high enough to go home, but he was required to have his blood tested once a week to make sure his body was accepting the new blood and to ensure his counts remained stable.  As the weeks went by it looked like Colton was recovering well and we welcomed his little brother into the family and celebrated his 2nd birthday. As we continued to have his blood tested into October, his platelet count slowly started to decline.   Colton was subsequently diagnosed with idiopathic thrombocytopenia (ITP) which we continued to monitor over the next couple of months.  The doctors hoped that his platelets would recover on their own over time and tried treating him with steroids, however his counts continued to go down.  In December, his counts dropped acutely; down to critical levels. On December 23rd we noticed bruises all over Colton's body and, when tested, his counts had dropped to seven. They dropped to less than one after Christmas. 

On January 2, 2014, we came very close to losing Colton.  After New Year's, Colton caught the flu virus which caused him to throw up and rupture the lining of his stomach. The rupture caused severe life threating bleeding in his GI tract due to the low level of platelets and his body's inability to stop the bleeding.  Colton spent the next week in the PICU and ICS units at Primary Children's Medical Center, where he received several platelet transfusions,  a blood transfusion, plasma transfusion and IVIG therapy along with many other medications to stabilize him. He was put under twice during his stay, once to place a central line into his jugular and once to scope his stomach to assess the severity of the rupture.  After a week, Colton was stable enough that we were released.  His platelet counts were still low, but his white and red cells were high enough that he was able to come home and recover in the comfort of his home. Colton continued to have his blood taken once a week and on February 18th his white blood cells started to drop. This has resulted in a potential new diagnoses of Evan's Syndrome. Evan's Syndrome, a very serious and rare autoimmune disorder, is very hard to predict and very hard to treat because it can affect any blood cell line at any time or even multiple lines at the same time. It is not uncommon for children to have one cell line down at a time, but it's extremely rare to have multiple lines down at the same time, which Colton has.  In addition, most cases respond to steroid treatment or IVIG therapy, neither of which have helped Colton.  Although we are grateful that he does not have cancer, Evan's Syndrome is treated in much the same way and Colton is seen by the hematology and oncology doctors at Primary's.  Colton has a very long and hard road ahead of him, but he has proven many times how strong he is and how much enthusiasm he has for LIFE. Please help us show Colton how much love and support he has as he continues to fight this battle.