Stem Cell Trip

We just got back from our trip last night (Tuesday) at around 11 pm, and so this has been my first free minute to update. Overall, the trip went really well. We got there safely, no sickness while we were there, beautiful weather, a smooth stem cell procedure, and we had a lot of fun in the process. I would say that we had some good luck! We drove down to San Diego on Friday, February 12, and we got there in the evening, about dinner time. The kids traveled well, as they usually do -- they trust us that when we decide to take a road trip, it is usually worth it for them! We had been telling them all along that we were going to Sea World on Saturday. But what none of us knew was that our hotel offered a two days for the price of one ticket, so we got to spend two full days at Sea World as a family of five, for the price of two adult tickets (since the kids are still free under 3 years old!). And we really made the most of it; we saw every exhibit and almost every show. The kids loved it. They were especially enthralled the Shamu show. They all did the "Shamu Shamu" chant and hand gesture, and Ari burst into hysterical laughter every time Shamu splashed the audience. I've never seen her laugh so hard... I, of course, was crying (happy tears) the entire show. We stayed at the Comfort Inn & Suites Zoo/Seaworld. The room was divided by a sliding french door, so the kids had their own separate area that fit a pull-out full bed and a crib. Gabe and Ari shared the bed, and loved it! I was shocked that they slept so well that way, but they were so worn out from the day's activities, that we all pretty much crashed each night. On Monday, our driver, George, picked us up from our hotel around noon, and drove us down to Tijuana, Mexico. We traveled without any troubles, transporting our stem cells along with us on dry ice from the States. After we got settled in, the nurse attempted to place Ari's IV for the stem cell transfer. As usual (Ari is a hard poke, remember), this took 6 tries. On the 6th stick, the IV was placed. Meanwhile, Dr. Ramirez gave Ari a mild sublingual tranquilizer to calm Ari's anxiety while she was getting stuck. As usual (Ari has some crazy adrenaline, remember), Ari didn't allow herself to give in to the effects of the drug until after the IV was in place. But then she slept through the remainder of the procedure, which did help things to go smoother. Through the IV in her foot, Ari received mannitol, a sugar-based drug that is meant to open up the blood-brain barrier to help the stem cells travel from her blood stream to her brain tissue. Following that, Ari got three vials of stem cells, each containing at least 1.5 million stem cells. The total number of stem cells that she received totalled 4 million or more! Gabe and Bella spent most of the time looking out the window, eating lollipops, watching a movie, and entertaining the medical staff. Gabe did try to awaken Ari with a kiss a time or two and was perplexed when his prince kisses didn't work on the princess. We were at the clinic a total of about two hours. Then we were on our way back to California. It was a relatively simple procedure, and it went as well as we could have hoped. The doctors said that, should we see results, we can expect to see them any time between now and six months from now. We have not seen any changes so far that are dramatic enough to attribute to the stem cells, but Ari was very active these past two days; she was full of energy and in good spirits. Should Ari show improvements, we will plan on making a trip back for more stem cells. If no improvements can be attributed to the therapy, then we will focus our efforts and funds elsewhere from her on. We will be able to make that call in about 6 months time. On Tuesday, instead of coming straight home, we decided to make one last pleasure stop and go to Mission Beach. We got a late start on the road, but it was sooo worth it! It was just so much fun! It was Ari & Gabe's second time to the beach (the first was when they were Bella's age), and it was Bella's first time. The kids loved running in and out of the waves. We weren't prepared with bathing suits, so everyone was half-nude, soaked, and sandy, but I think that made it more fun. It was the perfect end to a great trip.

Well, our first stem cell experience is over, and I'm so glad that we did it! We are very hopeful that Ari will make gains as a result of the treatment. Just the thought of it is amazing. But do I feel relief, like the load has been lifted? No. I still feel stressed. This may seem like par for the course, but I don't think I'm without reason. There's a lot that's still on our plate. We have diet restrictions such as no red meat, no dairy, no acidic fruits (especially mango, papaya, pineapple), no sugar (opens the blood-brain barrier), nothing too warm or spicy, limit wheat, increase green veggies... basically, we are trying to avoid any foods that may cause inflammation and distract the stem cells from their purpose. She is supposed to be in optimal health, no stress, live in a bubble. It's not going to be easy. Just yesterday, Ari found Gabe's cup of regular milk (she's drinking soy milk right now) and chugged it. She later got a hold of two pieces of my Valentine's Day Godiva chocolate, wrapped in aluminum foil, and ate them both...aluminum foil wrappers and all. Now the sugar alone is a concern, but heavy metals (even trace levels) are toxic to stem cells. That added to the Lovonox injections twice daily, and we don't know what effects that has on our chances of getting the results we're after. We are playing the wait-and-see game right now. I know that despite how much I want it to be, despite how much everyone is aching for it to be, this is not going to be the "and they lived happily ever after" ending to our story. While Ari may have improvements (which is our hope; a miracle in itself), she will never have a "normal" life, and this is just one step of many that we'll take in order to improve her quality of life by just a teensy tiny bit. I know this may sound disheartening to many, but for all of us who stand by Ari, this is her road, and we plan to walk it with her... every difficult step of the way. This morning, Ari began her anticoagulation (blood thinner) therapy in an attempt to stop the growth of the new blood clot in her brain (and possibly dissolve it, I've been informed). She got a shot of Lovonox this morning, another this evening, and a pill and a half of Coumadin this evening in a fig newton. She hates the shots, of course, but those shouldn't last more than two weeks (20-28 shots in all), so that's not my main concern. My main concern is that Ari was shaking and trembling tonight, came down with a fever (she has a cold, so it may be related to that), is grunting, starting to look pale, accelerated heart rate, and she is getting large bruises on the sites where the failed IVs were placed on Monday. I called the hematologist on call... twice, and she said just to monitor her closely tonight, but she doesn't expect that the Lovonox could be causing that reaction, because she has only had two doses (not even supposed to be within therapeutic range yet). So... this is the update. Thank you all for your prayers and well wishes. I will keep you posted.