Update 179

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Posted by Laura Tubo ( on 23:01:28 18/04/05

Sorry to the faithful Bloggers---our internet service was down for the past 3 days, so my good intentions of posting went by the wayside. Still, time away from the computer afforded more time as a family. We were minus one this past weekend, though. Jeff was gone for the weekend trout fishing in PA. He came home with a few fish and one particular memory to last a life time. As a public service announcement, I will offer a word to the wise. If you lose a needle, be sure to locate it PRIOR to wading across a chest high river. Or, you may just find it the hard way like Jeff. I know this is a family site, so let's just say that I'm not the only Soprano in the Tubo house anymore! Good thing, because we could use another one. I had to miss mass this weekend because Joey spiked a fever Sunday morning. I was able to bring it down with Tylenol, and it has yet to return. This was our second bout with fever this past week. The doctor provides no real explanation for it. In fact, Joey's exam on Thursday was about normal. He does still have a little hemoglobin in his urine. The doctor feels this is a late effect from the chemotherapy. I asked if she felt is was permanent, and she said no. So, I hold on to that in my positive info column. As for the fevers, our family theory is that Joey's immune system may be asserting itself against little bugs here and there. It must be retrained at every turn. In fact, we did confirm that Joey will need ALL of his immunizations repeated at 12 months post transplant. . Just another hurdle that I am sure he will surpass like the champ that he is. His next round of scans will be May 5th and 6th. He finished his last round of Accutane today. These scans are to be done 2 weeks following that. It will, I am sure, renew our sense of God's healing power prior to our Make A Wish trip in June. Joey's wish is to be in a Disney Parade. We have yet to be told whether this will be accomplished, but we are hopeful as always. As it is, it will be a dream come true. We are being given a first class experience with our own Super Hero. God's grace continues to overwhelm me with each act of kindness that has come from this dreadful diagnosis. Each day, I am thankful for the gift in the burden. This Spring has been such a renewal for me. Yesterday, Joey and I did some more "gardering" (gardening). He was as excited as I to see all the new growth under the old leaves. It feels like such a fresh start for all of us. And, despite everything, Joey is growing as well! I still see my cute little guy, but I'm not alowed to say it. In fact, I have quite a few rules courtesy of Joey. I am forbidden to say he is cute, little, or my baby. Permitted words include: cool, dude, and big. As long as I can remember the rules, everyone is happy. At least he can't read....JOEY, you will ALWAYS be my cute little baby!

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