Sunday, August 26, 2012

To my faithful whales...

A very rare occurance...Bela sleeping!!!

From two days ago...she no longer has that IV on her left arm or the oxygen tube with tape on her right cheek. Updated pics to come later.


Sorry for not blogging this past week. Nothing was wrong except that I'm exhausted and the only time I really have to sit at the computer is at night, like tonight, and then my brain just doesn't work. But I'm going to try to update you as best as possible.

She finished her first round of chemo last weekend. They immediately started her on three antibiotics "just in case" she had an underlying infection, though all of her blood cultures came back negative, thank God!  The body naturally has viruses, "flora", and bacteria but when someone like Bela doesn't have the immune system to fight back, the body attacks itself, basically. So they are preventing any infections in advance.

Her blood pressure is a little better, although not good enough to take her off the meds.

She is completely off of the oxygen so they were able to take the tube off of her face, although she could've done it herself. She's getting good at grabbing. she nearly pulled her feeding tube out twice yesterday, when i wasn't looking, of course.

She isn't having what the hospital deems a "fever" anymore, so she has gone over 24 hours now without any morphine, tylenol, or adavan...yes, Adavan! She's confusing her nights and days, though, so I wish I could've been the one to have had some of that last night! And Wednesday night when I held her from 12:30am-6:30am. Let me tell you, I think that was the first time my "night of sleep" started at 6:30am and ended at 10am!

Her "team" consists again of the Gastrointestinal and Infectious Disease specialists. They figured out she is suffering from a temporary condition called Typhlitis: an inflammation of the bowels.  It doesn't require meds and will get heal on its own by resting the gut, so she's off feeds again for at least a week. She is receiving nutrition and lipids through her central line and doesn't seem to be missing the milk too much. She really does have the advantage in a lot of ways because of her age. Older kids who know what food is sleep for two weeks straight because they feel so hungry.  This is a common occurance in patients like her. So we just wait until her "gut"(the actual word used by all the doctors) to heal and then they can slowly start her on milk again. It could be up to two weeks.

They also always have her on anti-nausea meds and pain medicine *as needed*.

She is starting to lose her hair. You can't tell by looking at her but can see the "shedding" on her clothes and sheets.  Again, her age is on her side.

The social worker reminded me this week that this is a very rocky road. there are good days and bad days. The days are long but the months are quick. There is so much support at the hospital emotionally, physically, and even financially, if needed.

So many of you have graciously offered your assistance and usually I don't even know what we need, but let me direct you to a great resource on the web:


http://www.curesearch.org/

It has all of the scientific info on "AML", acute myeloid leukemia, plus info on research, coping, and how to get involved.

Also some of you may know that we are putting together a team for "iwalk for kids" in October.  It is a flip flop walk to raise money for the cancer center where Bela is being treated. We love the center and havn't met one staff member who doesn't already feel like family! Please consider joining us on the walk if you are in the area or donating towards a wonderful cause!

http://www.kintera.org/faf/search/searchTeamPart.asp?ievent=1027862&team=5168758

please let me know if the link works or not.

I've found a kids book I love, Santi checked it out at the library. It's called "Amos and Boris".  It's about a mouse, Amos, who meets a whale, Boris, after his ship is destroyed in a storm. Boris saves him and they Amos spends his days on Boris' back while they talk about their hopes and dreams for their futures.

 It reminds me a lot of our lives right now.  Before, Amos was all alone in a scary and vast ocean, wondering how he would stay afloat. But after he met Boris, he realized he wasn't alone and Boris saved his life.  Now, forgive me, for this is where the analogy breaks down a little bit, but all of you prayer warriors out there are our "whales".  Your prayers, love, cards, calls, and support have kept us afloat during this storm.  We are even able to keep our dreams for our family alive.  But the story doesn't end there.

Boris eventually lets Amos off at his house and Amos, out of intense gratitude, commits to repay Boris one day for saving his life. Boris accepts his offer but keeps to himself his doubts about how a little mouse like Amos could ever help a huge whale like him.

 But then a tidal wave from a hurricane washes Boris ashore, "coincidentally" right in front of Amos's house.  Amos brings two elephants to the shore who push Boris back into the ocean, so Amos essentially saves Boris's life, keeping his commitment to repay him.

Please know that we hope you at least know how willing we are to repay all of those who have lifted us up at this time, not only in prayer (but especially in prayer), but by visiting, donating, calling, emailing, commenting, texting, etc. And when you need it we will rally our "huge elephants" (don't worry, I'm not thinking of anyone in particular) to give you a push of encouragement in the right direction. I know I'm going to lose a lot of readers since I just called you whales and elephants, but please hear my heart in this.   I've learned that prayer is the most important gift one can give to another and now when I tell someone I'll pray for them, I will do it and pray as if praying for my own child. THANK YOU!!!

Now for the prayer requests...
1. Dr. Z says he and the others are still concerned that her liver and spleen are still too big. They should've gone down with the chemo. His theory is that there could be a lot of scar tissue in there. Don't expect me to explain it well.  Please pray that those two organs go down to a "pleaseable" size for the doctors.  They'd like to do a biopsy but cannot until her blood counts go up. Surgery of any kind right now is impossible because of her risk of bleeding and infection.

2.  Please pray for her fevers to keep staying away and her blood pressure to reach normal numbers so that she can get off of the meds.

3. Pray that her Typhlitis heals completely and rapidly so that she can start eating again soon.

4. That her blood counts all reach healthy numbers soon and she continues moving speedily in the right direction so that the chemo and healing happen quickly and her doctors are amazed!

And now for the praises...
1. On her most recent blood test, no "blasts" were found! Blasts are the white blood cells that behave badly and multiply.

2. Dr. Z is very happy with how she looks and how she's doing. We are happy for positive reports from the doctors that she is headed in the right direction.

3. her abdomen is smaller and softer. We could'nt even button a 3 month onesie on her last week and now we can!

4. For friends who take us out to dinner and remind us that not just in situations like this but in everyday life Jesus commands us to take it one day at a time, "for each day has enough trouble of its own." -Matthew 6:34

2 comments:

  1. so thankful to be a whale at this moment. regardless of my actual size, my heart and soul are ever prayerful to Our Great God for His faithfulness.

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