Yesterday, Joe had a PICC line put in. So far it seems to be far more comfortable than the ones in the past that jutted out from his neck! At times there is a little bit of pain or weirdness in his arm, but nothing too bad. Joe was started on Ganciclovir at the hospital yesterday morning. In the afternoon all the doses for the rest of the week were delivered to our front door. Just like the first time, the Ganciclovir comes in these cute little containers that look like baby bottles. Inside is what looks like a balloon filled with the medication. All we have to do is hook it to Joe's line and it runs for a little over an hour. The last time, Joe was getting his morning dose at the hospital and his evening dose at home. This time both doses can be done at home. This morning, Joe had an appointment so we brought the Ganciclovir so Joe could get his dose while we were waiting for our appointment. The nice thing is that Joe was given a kind of "Fanny Pack" so that he can just slip the bottle inside and continue on with his day. Joe also received platelets yesterday. Today's results show that his platelet count didn't go up very much. Joe will go back to the hospital on Sunday for another blood draw to determine whether or not he needs another platelet transfusion.
Our next appointment with the doctor is on Tuesday the 15th. Joe's next bone marrow biopsy will probably be on May 22. Here is the part where we need EVERYONE to pray, and pray, and pray, and pray, and pray. We are all praying that the Vidaza is doing its job and Joe's abnormal cells are being suppressed and his donor cells are completely taking over. This is the ideal outcome. If this happens, then Joe will continue to receive Vidaza treatments monthly as maintenance. (Not sure how many months yet.) We don't really want to think of the alternative, but I must share so we can all pray more effectively! If the bone marrow biopsy shows that the donor cells are not increasing, then Joe will likely need to have a second transplant with a different donor. The second time (which of course we are praying never happens!) Joe would be getting low dose radiation in addition to all the other pre-transplant conditioning he had in January. Surely this second transplant business will never happen.
Joe and I are remaining hopeful and optimistic. All we can do is take one day at a time. We've found a kind of balance between expecting the best and being prepared for all things that are less-than-the-best.
We read a very inspiring article this week.
Teen cancer patient's blog celebrated life.
also, you must read this beautiful blog entry that was mentioned in the article... Whatever life we get is bonus. It is amazing that an 18 year old could be so wise.
Though the fig tree does not bud and there are no grapes on the vines, though the olive crop fails and the fields produce no food, though there are no cattle in the stalls, yet I will rejoice in the Lord, I will be joyful in God my Savior.
~Habakkuk 3:19
6 comments:
We will be praying, praying, praying. In transplant land there is lots of time to pray and much desperate prayer! You are continuing to stay positive, and one day at a time is what God says we should think about. I saw a sparrow taking a little "bath" in a puddle on the street corner on my way to HMC this evening. I smiled because God reminded me of the verse...consider the birds of the field...can't remember the exact wording, but the gist is that HE CARES and PROVIDES for them, surely He will do the same for us. (Of course, then I thought how much easier it seemed at that moment to just be a bird...a natural thought during times of extreme duress, huh?_) "Be strong and courageous, do not be terrified, do not be discouraged for the Lord your God will be with you wherever you go".
Joshua 1:3
Joe & Karen, we are praying for you continually and know that the Vidaza will do its wonders and that second option won't be needed. When it is dark and we feel alone, it can be difficult to feel the warmth of the sun which guides us. May your clouds soon clear and sunshine fill your spirit. Stay strong and peace and grace be with you both! Much love - Beth & Dave
I will never, never stop praying, you are always on my mind. Much love and affection, Gretchen
Many, many prayers are coming your way. Even more than usual. I just know everything will work out... don't even think about that second option! :)
We're thinking of you always!
Love,
Sara & Mike
My 13 year old daughter, Laura, just received a stem cell transplant at Children's Hospital of Philadelphia. We spent 4 months in the hospital, post transplant, due to some challenging complications. Laura developed Stage 4 GVHD skin disease which was one of their worst cases in many years, and we developed many innovative techniques to deal with what essentially is a "burn" victim.
If you ever experience the extreme form of this side effect, I would be happy to share the protocol that was developed for Laura--one I'm told will help many children in the future. But, just a suggestion for your less serious case, find a small tub of "Egyptian Magic" cream, sold at most Whole Foods stores. Also on the net at egyptian magic.com. Read about it and know that the transplant docs in Philly are still talking about the amazing, scar-free rebuilding of Laura's skin. She even had blisters on her eyelids and inner ears, with over 80% of her body being an open wound bed at one time. The simple ingredients and extreme emollience of the cream make it indispensable for a variety of skin problems, and for years i've always kept it in the house. I'm essentially a rather shy person, but if we don't share miraculous successes, we are not doing our part to give back.
Remeber to laugh heartily at least once a day! You will be in our prayers, too!
Thinking about you every day, Joe and Karen! ((Hugs))
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