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Monday, September 24, 2012

Sunday September 23rd, 2012-ER

So close to the end, but a little reminder that we are not quite there yet. This is a picture of Josh and Steve in the ER last night waiting for Ella's blood work to come back.

Ella has been coughing for the past week, and Saturday late morning, she took a nap. Then she ate and fell asleep next to her brother on the couch. If you have been keeping up with us you know that Ella NEVER NAPS!  So we went out for some fresh air, and came back to a temp of 101.7. It had been slowly creeping up all day, but hovered in the 99's. Then all the sudden- 101.1, 101.5, 101.7 within 30 minutes.  If you are a cancer mom you know that we live and die by this thing here:
Whenever there is a twinge of wonder in my mind about how she is feeling- I grab this thing. Got a cough? Go get the thermometer. More tired than usual? Go get the thermometer. Crankie? Go get the thermometer. Not hungry? Go get the...well, you get the picture. And for our family, one isn't enough.  I have two of these and usually can't find one of them when I need it. I also bring it to the hospital with me because she won't keep theirs under her tongue and she will be burning up and only have a temp of 98.9. Or last nights ER nurse check which was 99.3.

I don't like the ER. It never use to bother me but when the Doctor called and said do you want to get admitted or go to the ER, I said ADMIT US! Steve and Ella chose ER, so I was outnumbered. When we got there the staff parking lot was empty, but the patient lot was full, so Steve had to drop us off and go over to the main parking deck and catch up with us. It took him about 15 minutes to get back to the ER. When they called us back for triage, I told them I would need to go back out to get my husband and they said not to worry because we would be going back to the waiting room. I told her we would not because there was a possibility Ella was Neutropenic and it wasn't safe for her to sit out there. She ignored me. So I was getting REALLY warm fuzzies about how this was going to go. They gave us the option of sitting back in the waiting room or standing inside the entry door by the wheelchairs till they had a room for her. Maybe I'm just a freak, but seriously? Wait with your child inside the door by the wheelchairs where there is no place to sit until we call you? They had no place for any immune suppressed person to go except the front door. I was so very temped to walk right out that door! I waited patiently, holding by burning hot kid for 5 minutes, then I messaged my doctor..  After that I told Steve 5 minutes and we were going to admitting. It was only under Ella's protest that I stayed. She did not want to have to spend the night under any circumstances.

Once we got called back, things ran much smoother.  For the first time Ella was accessed smoothly in the ER. The entire time we were waiting for her to be accessed Ella kept repeating "Momma I'm scared." I was so very grateful it went well, and she fell right back asleep as soon as they were done. They also re-took her temp and it was 101.4.  Her counts were good so they gave her the usual 'Just in case" antibiotic and we were home a little after midnight.  Ella slept until 9am this morning.  Her temperature is at 99.3 so we do not need to go back to the hospital unless it hits 101 again. Fingers crossed!
Part of our crazy support team.

Now after all this is done, is when I, Katie, start to lose it.  The enormity of watching my family sit in that little ER room, everyone sleeping and waiting together, it is overwhelming- but in a good way.  I was watching them and realizing how much this cancer thing impacts our entire family and how very blessed we are that we are in it together. All present, all working together and waiting together to help Ella heal and move forward as a family.  So many times people have said "I don't know how you do it." Well, I do. We do it because we are truly a team. We love together, work together and support each other. And it is not just the 4 of us. It is grandparents, neighbors, friends, and family.  As soon as I put out word the we were on our way to the ER, our support team kicked in with prayers, requests to help out and just "Thinking about Ella" wishes. If we didn't have this "Team", we wouldn't have made it this far in one piece.  I have read blogs from other parents whose marriages have failed when faced with this stress. From the start Steve and I said we would make sure that we would continue to watch over and care for our own relationship during this journey, and I am glad we made that commitment to each other.  Don't get me wrong,  last night when I threatened to walk out of the ER, he looked at me like I was a crazy woman, but he would have been right behind me. I know he's got my back on sane days and crazy days. I love you Steve.
Team Van Gheem 2011
Today Ella and I are singing:

Ella just asked me to put this one on her MP3 player. I think we will!
If anything changes I will keep you updated, but for today I think we will listen to some music shake our booties a little and chill out.

Thank you Team Van Gheem!

Thursday, September 20, 2012

Thursday September 20th, 2012

When I was in my 20's I remember joking with friends that "older" people only talked about the weather and what was ailing them. With "40" only a few days away for me, I can see why.

On Monday Steve had to go in for a minor procedure.  Only problem was the procedure had to be done by a major artery, so they had to put him under. He did fine, but that was what our conversations were focused on for Sunday evening and Monday.  On Tuesday we focused on Ella's chemo at Loyola. (More on this in a minute) And on Wednesday I took a friend in to tested to see if her cancer is coming back. I totally get why this is such a hot topic of conversation.  I just wish I could focus on God more than these medical issues.

Proverbs 3:5 Trust in the LORD with all your heart and lean not on your own understanding;(NIV)
Josh and Ella
Ella had clinic on Tuesday. She started the week by vomiting and getting a congested cough.  Ella's favorite doctor was in clinic this week, but her favorite nurse has been out on bed rest.  Her numbers were good and she had her chemo.  Then we got to talking with her doctor about the remainder of her treatment.  38days of chemo left.  It seems so surreal to me.  I'm happy, but I am also starting to get nervous.  The chemo part I am happy about. I can not even express how elated I am to not put drugs into her body any longer that I know are making her feel sick.  I am excited to see what a non-chemo and non-steroid six year old Ella will be like.  I feel like my real daughter has been clouded over by these crappy drugs some days that don't allow her to be the happy, funny and carefree child I know she can be. The nervous part comes from the unknowns. It comes from not knowing if she is going to re-lapse.  Not knowing if the cancer is back between check-ups at clinic. Not knowing how act if she does get sick or have a cold.  It will be our new "Normal" and I can't quite see what that might be like yet.

The remainder of her schedule looks like this:
Chemo daily
Clinic and Chemo- Oct 16th
Oct 28- Last day of Chemo!
Oct 30th- Bone Marrow Procedure
November 13th- Removal of Port
Then Make a Wish trip!

They are waiting to remove her port until I get back from a mission trip to Haiti in the beginning of November.  Ella is so excited to be counting down to her Make A Wish Trip.  She is most excited to ride in a limo.  What she doesn't know is that on her last day of Chemo, her dad and I are going to rent a limo to take her and her friends out.  I can not wait to see her face when that limo pulls up!   

Ella and Momma

Wednesday, September 5, 2012

September- Childhood Cancer

Here is what I ended up doing with Ella's photos. I just want to make people aware that even though it is hard to look at or hard to deal with, it still happens.  Kids get Cancer too.

Feel free to use any of these images of Ella to help spread the word.  September is Childhood Cancer Awareness Month.  We are walking this month to raise funds for research for childhood cancers.  If you are local and can walk with us- please join us.  Steve and I will be the official photographers this year for Chicago's Cure Search Walk.  Here is a link if your interested in donating or joining us.

Thank you.

Blessings~Steve, Kate, Josh and Ella