| March 17, 2004 Day +13 of transplant Day 21 in the hospital |
| Paige went to surgery this morning for a new broviac catheter. She returned to her room around noon and has been resting comfortably since. There was some oozing of blood from the new site so they gave her more platelets. Dr. Yanik was in to see Paige after returning from surgery. He was pleasantly surprised with her recovery from transplant. He smiled and said, " Most kids don't fly through transplant like this." Since most children do not recover as quickly as Paige has, we often question if this will work. He assured us that they've found no correlation between the quickness of recovery and the effectiveness of the chemotherapy given. Discharge is being planned for Friday :) Until she begins drinking adequate amounts we will give her IV fluids via her broviac during the night. If any of you have tried to give a toddler medicine by mouth you can image the struggle we go though daily. Over all Paige does very well taking her meds, she actually takes the pill better than the liquid. Since she'll require 3 weeks of antibiotics (for the positive blood culture she had on March 6th) and the amount of antibiotics she needs is not available in a pill, they have agreed to let us give her IV antibiotics at home. She'll need them every six hours, but it will be so much easier than trying to coax, bribe, and plead with her every time she needs medication. We'll return to clinic on Monday for a check-up and lab work. Through the entire process we've learned that no treatment plan is set in stone. For now she's scheduled to have a repeat MIBG, CT and bone scan April on 20, 21 and 22nd. They want at least four weeks between transplant and the repeat scans in order to see the full effect. From there she's scheduled to undergo MIBG therapy sometime in June. Dr. Yanik did mention that more chemotherapy is not out of the question if the disease should progress between now and then. Also, depending on the size of the primary adrenal tumor on the scans in April, surgery for its removal may still be an option. So here we are again.....hurry up and wait. We went into transplant against the odds and with the knowledge that this procedure wouldn't cure Paige. But, after seeing how great she did we feel not only blessed, but we've been rejuvenated with optimism and hope. We pray that it will control the progression of the disease and give us time to find a treatment that works for Paige. Love, Andy, Sandi & Paige |
| Labwork 3-17 WBC 8.4 Hemoglobin 10.4 Platelets 123,000 (after platelet transfusion) ANC 6,200 |
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