Joe's still in the hospital, but he's staying strong! During the day there are still moments of frustration/sadness/questioning, etc. But overall, this hospital visit is much better. Joe is feeling stronger. He's had some time to accept this new life. Things aren't as scary. The big plus is that the fever is staying down, and all of his cultures are negative so far. If he keeps this up, he'll be kicked out in no time!
The things that are frustrating include:
* Joe feeling isolated because he can't visit with friends or run off to the mall. It's tough because he craves that social time, but needs to hold off for now. In fact, only seeing me and his parents day in and day out is a constant reminder of that.
* Not being able to enjoy eating! Beyond all of us trying to focus on a healthier diet and taking a bunch of precautions like thoroughly cooking veggies and washing and peetling all fruit...Joe seems to be prone to little sores or cuts in his mouth and it is making him nuts! Also, IV antibiotics make everything taste bitter to him.
* When he's home, he's SO happy to be home. But it makes him sad to not be able to do things he used to do like...(believe it or not) clean the bathroom or help with the dishes or whatever. He can't go outside too much or do any major exercising.
With that being said, as mentioned earlier, Joe is learning to accept all of this and go with the flow. Not an easy task, since he is one who likes to be in control. Meanwhile, I'm learning to be a more responsible adult. Not an easy task, since I am one who likes to be a free spirit! Both of us are learning to communicate rather than keeping stuff bottled up inside. Each day is a new day of learning and growth. Thanks to everyone who is helping to push us along!
Okay, some encouraging news. Out of the 7 people that were filtered down from the 34 potential matches on the National registry, two have been contacted and getting another test to see if they are ideal matches. And a list of 50-60 potentials have been found on the registry in Taiwan. Who knows? Joe might find a match very soon! That's what we're praying for!
But no matter what, a bone marrow drive is being scheduled at our church for August 20, 2006. There are a lot more "Joe's" out there who need help! So, if not for our Joe...then for another!
The drive is being sponsored by the Cammy Lee Foundation, and it will be a minority based marrow drive. Minority groups are least represented in the NMDP so it is important to up those numbers! Joe's best chance for a match would be someone Asian. So...for all of you "non-minorities" who want to help so much...we LOVE YOU! We absolutely appreciate your willingness and desire to help...but we'll be plotting other ways to get you to help us out. :)
As for you minority folk. :) Mark your calendars for August 20, 2006 and plan a trip to Pittsburgh Chinese Church, 8711 Old Perry HIghway, Pittsburgh, PA 15237.
God bless. :)
4 comments:
I do hope Joe finds a match. If he doesn't let me know and I'll help set up a bone marrow drive in Los Angeles.
Karin Li
Please tell Joe I wish I could be there with him and give him the BIG hug I know he needs.
XOXOXOXOXOXOXOXOXOXOXOXOX
~Shelley
Karen-
I just had a chance to catch up on things on the Knot after having the baby. I cannot tell you how totally impressed I am with your attitude and spirit- truthfully, I am jealous. Our baby, Sydney Claire, was born on July 9th and about 12 hours after she was born, they came to our room to do a CBC test on her. No one still knows why this test was ordered, since I did not have high blood pressure or gestational diabetes- the neonatologist guessed it was because of her size (10 lbs 6 oz.!!). Anyways, the first 2 heel pricks clotted, so they had to take her to the NICU to have an H-stick done, which is when they take the blood from her arm. The results came back that her platelet count was 15 or 15,000, which is really low, you probably know. So they did another one just in case it was an error and it wasn't. The next thing I knew, they were whisking her off to the NICU for a transfusion. Needless to say, we did not take her home when I was discharged the following day, and that was really hard. She spent 3 days in the NICU and had 2 platelet tranfusions and 2 of IVIG. Her counts rose and we found out that I tested positive for Isoimmune Thrombocytopenia. This means that my type of platelet attacks hers and when my antibodies crossed the placenta while she was still in me, it began to kill her platelets because they saw her as a foreign object. It takes anywhere from a few days to a few weeks for me to continue to leave her body after birth, so basically she needed the tranfusion to help build her counts until then. They say you never stop worrying as a parent, but I didn't know it would start just hours after birth!! She is fine now and her counts are all up. We go back to the hematoligist once more for a last check and then she should be clear. This all has definitely made me stronger, which is why I admire your strength because I know how hard it is to stay focused. Joe is lucky to have you by his side! I wish you both all of the love and strength possible, but it seems you already have it!! We are praying for you!!!! xoxo-chicandsimple (Jessica)
"The great thing, if one can, is to stop regarding all the unpleasant things as interruptions of one's 'own' or 'real' life. The truth is of course that what one calls the interruptions are precisely your real life...the life God is sending (you) day by day; what you call your 'real life' is a phantom of (your) own imagination. This is what I see at moments of insight but it's hard to remember it all the time". Emily sent this to me way before Alivia was sick...at that time I thought..."Oh, this is so true"..., well in light of what is going on now it is still true, but, as you say, "getting used to this life now is so difficult. Your blog is very relatable, and we will continue to pray for you and Joe. And try to rejoice in hope, be patient in adversity, and pray continuously. Much love to you, Gretchen
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