Monday, May 7, 2012

Big Journey ahead

3 weeks ago my mom first noticed some unusual bruising on Jude and brought it to my attention.  My first thought was Leukemia.  I'm a bit of a hypochondriac, so I worked hard to assure myself it was just clumsy 3 year old boy.  He bumps something about 20 times a day.  We knew Jude had an iron deficiency and I always forgot to give him his vitamin, so the bruising was my sign that I really had to make sure he got that vitamin every day, and I also started paying more attention to the iro n he was getting in his diet.
A week ago saturday my family was having a cook out at my grandparents, and I mentioned the bruising.  That along with the fact that my childs new favorite food was dirt made us all feel it was probably due to the lack of iron and we made sure Jude ate a hamburger that night and made plans to have more red meat in his diet(we eat alot of deer, but not much beef).
That night Jude started running a fever around 101 with no other symptoms.  Sunday we celebrated Ty's birthday and his fever was around 100, still no other symptoms.  I took him with me Monday morning to our MOPS group, we were having a special day and I was suppossed to lead a craft.  We got everything set up and i was hoping Jude would just hang out  in the class with me, but he was not feeling great and getting pretty grumpy.  All the ladies assured me they had everything under control and told me to take that poor baby home.
Monday evening we ate cake at my moms to celebrate her birthday, his fever was just under 100 and my mom noticed he was looking kinda pale, my mind jumped again, Leukemia, but once again I worked hard to assure myself he was fine, he was just pale from the fever.  Ty and I decided if he still had a fever we would take him to the doctor tuesday.
It had been a while since I got up and spent some time with God in the morning.  Tuesday morning I believe the Lord woke me and gave me energy to meet with him.  He is so good and knew what the day held even though I had no idea.  I meditated on Psalm 3 and the verse "Salvation Belongs to the Lord" stuck with me.  It was a beautiful start to a day I would never forget.
Jude's fever was 99.5  tuesday, we decided to give it one more day, but there was this other symptom that was bugging me.  Jude had a few red blood dots by his eye, behind his ear and on his neck.  I had not allowed myself to google anything about the bruising over the past weeks, the internet can make you believe you have anything, but I finally decided I would research thse dots.  The reasons for them didnt seem to apply to Jude, then there was the phrase, possibly linked to cancer.  I decided it wouldnt hurt to give the nurse a call, share the bruising, paleness, dots and fever, all just to ease my mind.  She said we should come in right away.
I had a feeling blood might be drawn so I got jenn(and kathryn) to watch Titus so I could just focus on Jude and what the doctor might say.
They got us back within 10 minutes at the doctor and about 10 minutes later dr. bardi had us back out the door going to the hospital for some blood to be drawn.  He assured us we would have results in about 30 minutes but didnt really say what he thought was going on.  We got our blood work done and went to the store to get Jude a sucker for doing so well with the doc.  The whole time we were going to doc and getting lab work Jude wanted to be held and seemed very tired.
About 15 minutes after  the bloodwork, we were checking out at the store with a sucker and special drink and the doctor called.
He said it looks like Leukemia.  I sat on the curb outside the store and cried as my sweet little Jude kept flashing me his beautiful little smile.  The doctor said he was calling a doctor in Columbia and would call me back. 
I made the call to Ty and he left work to come pick us up at the store, I couldn't drive.  By the time he got to us I had already heard back from the doctor.  The Doctor in Columbia wanted us to go right away to Carolinas so they could transport us to the Palmetto Health Children's Hospital in Columbia.  By this point Jude was so exhausted and starting to fall asleep.  Ty rushed us to the ER where they were expecting us and they immediately started working on him. 
The Children's Hospital had sent out an ambulance with a pediatric team to come pick us up.  Ty, my mom and I rode on the Ambulance with Jude to the hospital where he was immediately admitted into the PICU. 
There we were met by an amazing team of doctors, nurses, child life specialists, and many others all waiting for Jude to arrive.  They began giving him toys to comfort him and working on him right away and explaining to us what was going on and the action plan.  We found that his Hemoglobin or red blood cells were about 1/4 of what they should be.  This is why he was so exhausted.  His white blood cells totalled 250,000, I believe the normal range is about 4000-11000.  These were not good white blood cells, they were the leukemia cells, or mutated white blood cells.  They were taking over all the space in the blood and not protecting the body as white blood cells should. 
Jude spent a few nights in the PICU as the nurses and doctors worked hard to get his counts in a better range.  He multiple blood and platelette transfusions and other procedures, we just kept signing papers to allow the doctors to work on him and make him well. 
He started Chemo one day after we found out he had Leukemia.  The Chemo knocks out the white blood cells, in an effort to get them to come back the way they should.  Each day his WBC seemed to cut in  half.  All the scenarios the doctors shared with us went for the good in Jude.  His little body was fighting and God's hand was/is all over him.  
We had so many people praying and joining with us, the diagnosis was overwhelming, but God was moving. 
Jude had to have a port put in his chest so that his chemo could easily be administered.  He will have this for the next 3 years to receive his treatments.
Once again, when we came in his WBC was 250000, but when they let us go home today his count was 200, this is way below the normal range.  This is part of the chemo plan, but because of this Jude has no way to fight infections or even defend itself against normal everyday germs we dont even notice. 

This week has been Surreal.  Today, Monday May 7th, Ty and I celebrate 7 years of marriage.  We also celebrated our son getting to come home from the hospital one week after his diagnosis.  For the next 3 months we will go once a week for treatments, they will share with us more details later.  They didnt want to give us to much to deal with at once. 

I feel moments of knowing God is in control and taking care of my baby and that he is going to fine.  Moments of feeling unable to tackle the task of caring for this boy that I love so dearly.  Moments of feeling this just cant be real.  Moments of faith, moments of panic.  I feel composed then completely unable to control the tears. 

When we left the hospital today I had a bit of a breakdown, I didnt want to leave, I cried, nearly threw up and pretty much had a fit.  But here we are at home, well my moms, home for the next week while some work happens at our house.  Jude is asleep in his bed and I'm trying to resist the urge to go check his forehead once again to make sure there is no fever.  Any normal thing a kid may go to the pediatrician for or just take some motrin for is likely a reason for a 2 day minimum stay in the hospital for Jude.  For this first month we will have no visitors besides specific people who have trained with us to care for Jude and very few family members.  No kids at all but Titus.  The doctor said that for the next 6 months or so Jude will not be in a class setting with other kids at all.  In a month or so we will get to have some very limited play dates.  All this to keep away any chances of Jude getting sick until his WBC can start to be at a normal level again. 

People have been so amazing to us.  People are praying, on their on and even gathering in groups.  Our fridge has been filled, work is being done on our house to make it a safer environment for Jude, Meals are going to be brought, we have been given balloons, toys, blankets, cards, goodie baskets, gift cards, monetary donations, offers for photo sessions, plans are being made for fund raisers, friends and family have taken care of Titus and our dog, people have picked us up random things from the store.  So Many things I cant even count, so many people have decided to carry this load with us.

This is a bit all over the place, but I just wanted to get some things down that I was thinking about and wanted to remember.

1 comment:

  1. Teena, I'm so sorry to hear about your sweet Jude! Please know that I have been praying for him and the rest of you family from the first moment I heard. God is going to show himself to you and to others in amazing ways through these circumstances and I know your family is going to be such a light for others. Please continue to post updates so that I can know how to pray specifically for your family. Sending you lots of love and hugs (from one mommy of a Jude to another!)!

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