Tuesday's Office Visit

Hi,
Hans had an Office Visit today. After two weeks, he was pretty apprehensive, as soon as we turned onto Fannin, he got upset saying, "I don't want a pointment, I wanna go home!" But, he calmed down as soon as we checked in and took a seat and were able to snuggle in a big comfy chair. His labs were drawn by venipuncture, since he is now without tubes. It went reasonably well, and he stopped crying as soon as it was over. They got us promptly into a room and we saw Dr. Russell. The non-news is that Hans didn't gain (or lose) an ounce. He is still exactly 10.8 kilos (23.76 pounds), not exactly the ideal weight for an almost four-year-old boy! At least he didn't lose. Hans has been experiencing diarrhea since his second surgery. Dr. Russell is concerned that his diarrhea may be getting in the way of his nutrition. We're going to give it two more weeks, and then she'll decide if he should start on a shot which will help him control the diarrhea. I can assure you that the boy has been eating like a mini-lumberjack (eggs, smoothies, spaghetti, PB&J's, cereal, chicken and more)! Actually, other than that, his counts were all fabulous: ANC 6,000; Hemoglobin 10.9; Platelets 228; and White Count 8.83.

Hans got his scan schedule for July - he'll have a Bone Scan 7/16, a CT Scan on 7/18, and an MIBG on 7/19. This is all actually a little earlier than I had expected (about a week). And it's less the Echocardiogram, GFR and Audiogram that he went through the last time he did his Scan-o-Rama. Maybe they'll add those in later? I didn't think to ask... I pray that all these scans will have "normal" results. If that is the case they will say Hans has No Evidence of Disease (NED), he'll be in remission! If that's the case - Hans will be on a couple of oral meds for several months. He'll take Bactrim for about 5 more months, an antibiotic, to prevent against a specific type of pneumonia for which he is at high-risk. He'll also take Accutane for 6 months (the acne med) - the idea is that this drug will inhibit tumor cell growth. He also goes back in for scans every three months (Oct 2007, January 2008, etc). And we pray that he remains NED.

• There are a couple of other kiddos that could use our prayers tonight. Serenity is battling BK disease and is currently in the ICU. I was able to pay her a brief visit today while my two kids waited patiently in the lobby (no kids allowed in the ICU). She touched my heart when she held her little arms out to me and said "Hold me" when I walked in. The poor little girl is in a lot of pain. But, she was slated for a surgery today to drain her clots and insert a catheter to her bladder directly through her stomach. She is now at day +17 from her third Bone Marrow Transplant and isn't showing signs of blood counts yet.


• Nathan just had a biopsy that came up showing additional malignant cells in his bones. They are still hoping to break out of the BMT unit by Friday. That'd be awesome.


• We ran into Carlie today at the Clinic -she looked adorable in a bright pink smocked dress, and her mom, Charon, is hopeful that the new meds she is on will help her.


• I read Patrick's update that his Central Line has been removed! They are celebrating in Lake Charles and don't have to come back to Houston for 2 weeks!


• We saw Chole today and she looks fabulous and was climbing the walls!
• I believe Roman started Bone Marrow Transplant on Friday last week.
  

Now that Hans is needing less and less medical intervention, I will try to post at least twice weekly with pictures and updates of his improving health and spirits, as well as our normal families activities...

Lara