The Good with the Bad

Really funny experience yesterday, I was reading in the last chapters of Moroni when Mormon is giving us words of encouragement; teaching us about faith, hope and charity. One of my new favorite verses is 7:39 "But behold, my beloved brethren, I judge better things of you, for I judge that ye have faith in Christ." Lately I've begun to give up hope that Henry could over come his LCH with the one bone marrow transplant, I know the whole post about doubting nothing... and I'm doubting a bit again!!! This gave me encouragement. I have so enjoyed reading the Book of Mormon this last year, it was much more emotional and inspiring and personal. At the same time I was receiving inspiration and guidance, and encouragement for my own life. And Moroni and Mormon truly saw our day and counseled us with the things they, and the Lord, felt most important for us to know and understand. And that verse helps me when I'm doubting myself and my faith.

Mormon continues to talk about charity and he tells us that if we are meek and lowly of heart and confess the Jesus is the Christ we must have charity, "if ye have not charity ye are nothing." Verse 45 teaches us what charity is, "Charity suffereth long, and is kind, and envieth not, and is not puffed up, seeketh not her own, is not easily provoked, thinketh no evil, and rejoiceth not in iniquity but rejoiceth in the truth, beareth all things, believeth all things, hopeth all things, endureth all things." I thought to myself I could argue that I've suffered long, but not really, and although I try to be kind I'm not always, and I envy those that have healthy children, and I feel puffed up when people complain about being here for a few weeks or months, because I'm so much better for being here longer.. I know makes no sense...I am continually seeking my way, and just going to the ER provokes me! I don't think I rejoice in iniquity and I believe all that I know, I definitely hope for things, and have a hard time bearing all things... all in all I was laughing because.. I'm pretty sure I just checked everything off in the "need to work on" column!!! hahahaha However Mormon continues to give us a hopeful out look, he says, "Wherefore, my beloved brethren, pray unto the Father with all the energy of heart, that ye may be filled with this love, which he hath bestowed upon all who are true followers of his Son, Jesus Christ." So at least I know that while I may not have charity now, I can indeed pray for help in attaining it.

Understanding faith, hope and charity, have helped me handle the things we have faced and it has helped me to renew my hope that Henry will be able to be healed with out the second transplant. I talked with the Doctors yesterday at rounds about our outlook at this point, and while we are doing all the pre-staging for a second transplant we aren't decidedly going to do it. Better to have everything in place in case you do need it. Here is the breakdown of what we have done and what's coming and how they tie into the decisions ahead.

1. ultrasound of his liver and spleen: they both are still large, but stable from the last ultrasound.

2. CT of his head lesions: No new ones, old ones are healing

3. Bone Marrow biopsy: will do tomorrow, looking for any histiocytes or signs of LCH. Also looking to see how much of the donor is still there. Last test showed 15% which can still lead to GvH, so they will rule that out. If there are no histiocytes, no real need for transplant.

4. Darbo: Every two weeks he gets a shot to help boost the red blood cell production. I asked if because his counts weren't strong enough to stop the frequent blood transfusions if that would be a reason to do a transplant and they said no. That is something they would wait out and give his body a chance to rebuild on it's own.

5. Check back with Dr. White about bone density, and the continuation of pemidronate (boniva). His back is definitely stronger, they want to x ray or scan his back to see if it's healing.

We're basically doing a huge "how's Henry's body doing" check up. And then we'll definitely know whether we need the transplant now. On the other hand we go back into waiting mode, waiting for signs of the disease to pop up, or for his body to rebuild. Getting him transfusion independent is the big next thing in my book. His liver and spleen being large and directly related to the marrow's inability to build more cells. However, he is back on medication that suppresses the counts so once he is free and clear from his Bactria's and virus' we'll have a better idea of how his body is doing.

I had hoped that we would be able to leave shortly after Joel to head for home, and while that isn't possible yet, I do feel that it won't be very long. Henry is definitely strong and the Lord is so merciful and kind. I have gained a greater understanding of hope and trust in the Lord and while I still some how find things to complain about I know we are abundantly blessed! And I know that if we seek the Lords will and do what he asks he will bless us with an increase of faith, hope and charity, regardless of how weak we may feel we are. I know this was long and drawn out but there was just so much I wanted to share with everyone. Much love to all our friends and family.