November 2007 Archives
Well the evening didn't go exactly as planned but it was a great celebration anyway. We had lalos takeout and a really fattening pie that Dave brought home from Bakers Square. I am so blessed to have such a great family and husband and three beautiful kids (who drive me crazy ha ha). We decided to celebrate my birthday along with Simons rebirth-day as today marks one year post transplant number two. Its hard to believe and its hard to relive what he, Marriana, even and maybe especially Isabel have gone through along with Dave and I the last two plus years but its also glorious to feel some relief and we pray and hope and wish for nothing but improvements from here on out. Simon is much better than he was but he is not without issues. He has increasing stooling and told me today his stomach hurt him which is how things started almost 3 months ago. I know reading these updates all seems so well and so much better and it is, stable to a point, but its such a roller coaster and we take every good moment and hang on it because the fear of something going wrong is always looming. We thank everyone for sticking this long journey out with us and know that with your love and support and prayer we will all be even better every single day that goes forward. So thank you all. I feel blessed to be where we are. It's a miracle that Simon is doing so well and we know every day is a blessing and every day we share life with our miracle. We believe and we will continue to. Please if you can stop for a moment at 8:00 pm on the 28th and say a solid prayer that Simon moves forward with no further issues and all resolve with a new immune system. Celebrate his rebirth. Thank you and God Bless. Love Tracy and David
So how do you like my new cut? Mom did it yesterday. Pretty cute huh? Mom said it was getting too long and looking a bit wild. Me, I liked it but this is cool too. Well we spent the morning at clinic. I had to get pentamadine again. I really hate those port needles. I dread having it go into my chest and I'm definitely developing callous like skin around the site but I guess it beats the alternative of having to get stuck multiple times trying to find a good vein. I don't think I really have any. Mom was anxious about my vntrs so as soon as Kim and Dr. Duerst came in she asked them and they said the T and B were both 99% and my myeloid were in the 80s. I saw my moms face frown. We talked about it later and decided that if any other person had their numbers checked as much as I did it would probably fluctuate and the T and Bs were good so we are going with that feeling. I am getting a little vacation from clinic as we do not have to go back for three weeks. That has not happened in 5 months so we are excited to take the break and hope that all stays boring for us. I do have an open sore in my mouth that mom is concerned about so we are washing it with mouthwash stuff twice a day so say a pray that that does not get infected. My stooling is about the same so hoping it stays that way and my skin is drying up but new ones are forming too so we are never sure what course it will take. Pray it just resolves and goes away. Well thank you for always checking in on me and praying for me. I will keep fighting to make you all proud and show you that your prays and caring does help me so much. Please keep my friends, Nicholas, Margo, Samuel, Connor, Rhys and all sick children in your prayer. Thanks Simon
We hope that everyone enjoyed their holiday. We are very thankful for all of the progress we have made and were able to spend our first thanksgiving in two years at home with family. It was a bit disappointing since my sisters little one got sick and they could not come but we enjoyed the company of family and ate a lot and played. The photo is my gram with some of her great grandchildren. A beautiful site. I remember last year at this time and how David and I felt so sad and alone as we sat in simons hospital room eating the turkey I had prepared and brought down to the hospital for us all to enjoy trying to make the best of it. It made me so thankful to be home but it also made me sad for the many families spending the holidays in the hospital. I have two families that are close to my heart at Children's right now that experienced this yesterday and I ask for your prayers for healing for one families son and another's daughter so they are able to be home soon . It is easy for us to go on about our days and not think of those in situations like this or not know what to do to ease the pain because without actually being in someone's shoes you cannot possibly imagine the grief, worry, sadness and isolation you feel. I ask that if you know anyone ill or that has an ill family member to make an extra effort to do something of comfort for them without asking their permission. Bring a bag of groceries, offer to watch their other children, run an errand, just listen with a sympathetic heart and say "I don't fully understand but I am here and I feel so bad for you". That is all anyone wants. In this time of year when we all feel compelled to give. Remember those closest to you and think of what might help and if you can reach out to those you don't know.
On our healing front Simon is having a bad reaction I think to IVIG. I am disappointed as we had switched brands one or two infusions ago and I thought he was going to continue getting that brand because we saw no reaction, at least this is my memory of it, and half way through the infusion Monday I noticed it was the other brand. I was reassured by the NP that this was the one we used as she checked with pharmacy but on Wed, Simon started getting the red welts and now has them on his legs, arms, face, lips and even his ear and some on his back. They are growing in size and I don't understand how this becomes the process of it all. It is upsetting to see him dealing with it and itching and bothered by it all. I have to take him back in on Monday for another IV infusion, pentamadine and will probably get the vntrs then as well. Please pray for Simon, pray his skin resolves quickly and his vntrs are amazingly high of donor cells in all areas. Enjoy the long weekend. Happy Shopping, Happy Eating. Tracy and David
