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Journal

Saturday, March 19, 2005 9:11 AM CST

Today is 94 post BMT and Yasameen is doing well and is more active than before. The fungal infection is under control and currently receiving medication through IV to help with it. The counts are down to due Ganciclovira that controls CMV virus and this med will stop in two weeks. There is possibility that we go home to California in 4 weeks

Wednesday, March 24, 2004 3:51 PM CST

Yasameen was diagnosed to have Fanconi Anemia by Stanford hospital at age 3 ½ after having a massive nose bleed. Gradually her platelet count went down and transfusion frequency increased from every six weeks to every week by 2004. Stanford hospital was searching for a donor and uses a 6/6 criteria for BMT.
On October 2003 I requested the search to be done by Cincinnati children hospital (CCHMC) and by December 2003 we had two donors, one 9/10 that meets CCHMC requirements for BMT.

February 2004

Yasameen and I spend two weeks at Cincinnati to visit the BMT doctors and do a whole lot of testing and then we returned home to North California.

March 8, 2004

We come back to Cincinnati to start the BMT process and Yasameen started on weekly Ambisone transfusion to help her with infection, stop daily GCSF shot.

March 11, 2004

Yasameen has two donors outside the USA and we are informed today that a third donor is located here in USA and will take two weeks to evaluate the new donor.

March 15, 2004

I went to California to return to work. After testing, the new donor was preferred BUT he is not able to donate till July. A bone marrow biopsy was performed on Yasameen to see if things are stable and fortunately it was so we are returning home to California and wait till July.

In July we found that our donor is no longer on the list and we will be using our original donor from overseas.

November 7, 2004

Yasameen and I returned to Cincinnati for pre transplant workout. Test results all came out good except she has some dental cavities to be fixed. This week was all testing and visiting different doctors they will be involved later during BMT. The second week was mostly waiting for the test results to come back.

November 22, 2004

Yasameen was admitted to receive FLAG therapy for five days but ended up staying through BMT.

December 6, 2004

Yasameen was inpatient for chemo for five days then radiation once for about 45 minutes on December 13. December 15 stem cell transplant was done, everything went well, no complications so far. After radiation had mucus for several days and very hard time, off course no eating or drinking. Continuous Morphine dose made her condition worse so Dilated was tried and made her very itchy. Fenatol, another pain medication, seem to work for her at higher dose and this the main pain med for the rest of BMT.

December 24 and the counts started going up, Red cells, White cells but not Platelet. A test was done on December 27 and show 100onor marrow is grafted and repeated test on January 5, 2005 show 99.6 percent.

January 4, 2005

Yasameen’s blood counts and condition look good enough that we are allowed to stay outside the hospital. The first two day we stay at Ronald McDonald House then we moved to Hannaford Suites.

January 22, 2005

Yasameen had rash all over her body and fever of 100.5 therefore, admitted back a hospital room for evaluation. A skin biopsy was done to see if the rash is GVH and result was inconclusive. CT scan shows an abscess on right lung and biopsy confirmed fungal infection and culture did not identify any specific type. At meantime she received meds for fungal infection as well antibacterial. Fever, vomiting and jaundice continued for couple of weeks. After about two weeks some of the meds were stopped but will continue with fungal infection meds for several months.

February 19, 2005

Fever, vomiting, nausea, pain is gone for a few days and most meds are by mouth now. Yasameen has been able to eat and drink for a week now. We are allowed to go and stay outside of hospital today with more meds and IV that we have learned to do.

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Friday, March 5, 2004 6:51 AM CST

Friday March 5, 2004. In the last five days we had several doctor visits, CT scan, etc. Today Yasameen is scheduled to have central line put in, Bronchoscopy, and a 3rd bone marrow aspirate.