The Blog Continues

We've had some family and friends reccommend to us to keep posting to the blog since the battle is not yet over. I guess I didn't realize people were still reading it so I apologize we haven't kept it up to date. I'll try to keep posting from now on.

I also had some mention that too much of the previous was very happy and hopeful and they wanted to know if that was all true.... they said to put what we are actually feeling so people know how to pray for us and how they can help.

Honestly, most days it takes all the energy I have to not break down. Tessa hasn't been feeling well since we came home from the hospital. Even though her white blood count is down to normal, her red blood count hasn't been picking up as quickly so she's been a little anemic and therefore really tired and worn.

On top of that, there are the medication side effects. Her knees and joints have been aching so much that it has been hard to walk. Headaches have been worsening as well with a general feeling a nasea and just plain crappy. Her nasea pills don't help with nasea, she can't take tylenol or ibprofen for pain because they could mask a fever which could take her since her immune system is compromised, and she reacts to any type of narcotic pain reliever which  includes all the good ones like morphine, codine and we found out last night that she reacts to dilaudid, a supposedly safer morphine based drug.

I think the worst part is that there are no outward signs to any of this. So many people hear chemo pills and they think she'll lose her hair and look horrible. But she doesn't. The Chemo is such a low dose that her hair will stay... its just everything inside hurts. People are quick to say then "well thats not so bad then.. at least not as bad as you thought..." and its a struggle for both Tessa and I because we do feel very thankful for the leukemia being treatable so therefore we shouldn't complain.... it could be worse. But that takes away from the fact that there is still struggle and pain.

Another thing that sucks is still the unkown. The doctor said it could take anywhere from a year to 18 months until we get her body settled with the medication and at the right dosage. For the next while it will be a game of upping and lowering her medication so that it kills off just enough white blood cells but not too much. We were hopeful right away when we found out there was a pill.... now we are preparing ourselves to deal with some crappy side effects for a while. We just hope her body adjusts and she can feel somewhat normal again in time.

With discussing all of this with her doctor, they do say that these are more extreme side effects of the pill and we might have to discuss taking a different kind. However there are only 2 other kinds to try and with each step we lose footing with our tug-0-war for Tessa's health and life. The other two are also more experimental yet and have side effects of their own. For now then, we wait, see how things go and hopefully her body will adjust. We ask for prayers that her body will accept the medication and be able to handle it.

Last night was a reminder of all of this as we went to the pipestone ER. She spiked a fever of 101 so we had to go in so that they could test and see what was up. It was hard for me to be patient with the ER doctor as he was oblivious to the fact she had leukemia and that her immune system was compromised--even after we told him. After they told us they were going to send us home with some pain meds for her knees. They said she doesn't have an infection since her white blood count was normal.... DUH! She's taking pills that kill off her white blood cells, thats why we needed to come in. It was after explaining this the 3rd time he finally called the sioux falls oncology clinic where they ordered more tests and got her on an antibiotic right away.

I think it goes back to the fact that everything looks ok from the outside. They couldn't tell she had Leukemia and didn't understand her type of leukemia. She just looked like she was in pain.



I'm a manager of a farm/hardware retail store. I've been very thankful for my employees during this time. If it wasn't for them I'd probably go insane. Everyday at work my mind is all fuzz, I can't focus on anythign when I'm the one that usually gets everyone else focused to the tasks at hand. And then people ask how I'm doing..... I never realized until now how loaded of a question it is and how much people can't stand when you don't answer "good," or "ok". The worst is when people try and encourage you. I try and remember that at one point I did the same thing... I didn't understand.

I remember back to a past blog where I talked about joining a family of people somehow deeply touched by cancer or another illness... one that took much fight and the possibility of losing a loved one. I can tell who belongs to that family whether they ask me the question of "how are you doing"? or if they just come up with watery eyes and just give me a hug saying "i know" or  "we will never know why but our prayers are with you.

I write all of this because I wish someone would have told me before when I was naive. Never ask someone "how are you?" when you know they are struggling with an illness or deep emotional pain. The best way to show your concern and love is physical affection of some sort... even just a squeeze of the hand or a half hug.... For some reason, physcial connection with another human being reminds the person they are not alone and that others love them and are thinking of them. Its one of the ways in which actions speak much larger than any words could say.

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So thats the update. We're gearing up for a long road of general crap and pain. But yet we're thankful every day that Tessa is here. This is the meaning of bittersweet, something that is hard to deal with but thankful your still dealing with it; the alternative is death..... And that too is always on my mind and worries me continually. painful thoughts of her not being here anymore......

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prayer requests:
 that Tessa's body will accept the Gleevic and the pain and nasea will subside.
that we don't lose our faith in the road ahead as little things every day wear away at our spirits
most of all that Tessa can find some relief for the pain and be able to sleep, that will help alot

thank you everyone for the thoughts, prayers, and cards. At times like these it helps us so much to know how loved and cared for we are and that we belong so such a large family of friends and family of christian brothers and sister who are in constant prayer for us.

Merrick