Hunter tested positive for the flu again on Wednesday. However, he seems healthier and healthier every day. We are hoping for a negative test result this Wednesday. Hunter's new transplant date has been "tentatively" set for Wednesday, September 23rd, the day Grandpa and Grandma arrive in Seattle. Hopefully, the donor will confirm her availability this week.
PS. Was that too long for a tweet?
Sunday, August 30, 2009
Monday, August 24, 2009
Days go by ...
We met with our BMT team on Friday. They informed us that Hunter has parainfluenza. It is a common flu strain but could potentially cause problems for him during transplant if he isn't fully recovered. Our immunologist suggested we delay the transplant two weeks. However, the infectious disease team suggested we delay the transplant four weeks. Apparently, they must have met in the middle since we learned today that the Scheduling Coordinator asked our donor's center if she can delay three weeks, until September 25th. We have not heard back from the donor yet, but our fingers are crossed that her schedule will permit her to donate to our boy.
Today was a long day. Hunter received an infusion of IVIG*. We arrived at the SCCA before 8:00 am and didn't leave until after 4:00 pm. Honestly, Hunter does extremely well for a two year old who has to sit still with an IV in his arm for that amount of time. He loves the Child Life Specialist because she spoils him with toys, bubbles and coloring materials. She gave him his own coloring book, box of crayons and Play-Doh set to bring back to our apartment.
Overall, Hunter seems well. He had a blast in the game room once we returned to the Ronald McDonald House. He ran around in circles with a toy vacuum and shopping cart while learning how to play frisbee. He will have another nasal wash and throat culture on Wednesday.
* A blood product administered intravenously that contains immunoglobulins (antibodies extracted from the plasma of over a thousand blood donors).
Today was a long day. Hunter received an infusion of IVIG*. We arrived at the SCCA before 8:00 am and didn't leave until after 4:00 pm. Honestly, Hunter does extremely well for a two year old who has to sit still with an IV in his arm for that amount of time. He loves the Child Life Specialist because she spoils him with toys, bubbles and coloring materials. She gave him his own coloring book, box of crayons and Play-Doh set to bring back to our apartment.
Overall, Hunter seems well. He had a blast in the game room once we returned to the Ronald McDonald House. He ran around in circles with a toy vacuum and shopping cart while learning how to play frisbee. He will have another nasal wash and throat culture on Wednesday.
* A blood product administered intravenously that contains immunoglobulins (antibodies extracted from the plasma of over a thousand blood donors).
Thursday, August 20, 2009
Back in the Seattle again ...
We arrived in Seattle yesterday as planned. However, we took Hunter directly to the SCCA, which was not part of the plan. Hunter started coughing on Tuesday morning, literally twenty-four hours before our return flight. Initially, we weren't too worried because he didn't show signs of any other symptoms and was not running a fever. The staff ran a nasal wash, throat culture and chest x-ray on Hunter to see if there was reason for concern since he is so close to being admitted to Children's Hospital. After several meetings and an hour in the blood draw lab today, we learned that Hunter has a common type of influenza. We have a meeting tomorrow morning with the BMT team, but honestly we are looking at another delay, two weeks minimum. We are praying that the donor will be able to rearrange her schedule to donate when Hunter is healthy. We are in disbelief at the turn of events, but realize Hunter must be 100% before he begins chemotherapy. We have decided not to return to L.A. this time as leaving family and friends twice already proved difficult enough.
Friday, August 14, 2009
Confirmation
We received good news from the SCCA today. Their laboratory confirmed that Hunter's new donor IS a perfect match.
"Hunter's new donor is a committed 19 year old female, 10/10 match, same blood type/CMV status as Hunter. We can't ask for more than this in a donor."
Now we can return to Seattle without concerns regarding the donor. We will keep you posted!
"Hunter's new donor is a committed 19 year old female, 10/10 match, same blood type/CMV status as Hunter. We can't ask for more than this in a donor."
Now we can return to Seattle without concerns regarding the donor. We will keep you posted!
Sunday, August 9, 2009
Updated Tentative Schedule
Wednesday, August 19th: RETURN TO SEATTLE
Thursday, August 20th: SCCA OUTPATIENT ARRIVAL
Friday, August 21st: DATA REVIEW CONFERENCE
Monday, August 24th: PLATELET TRANSFUSION
Tuesday, August 25th (am): HICKMAN LINE PLACEMENT
Tuesday, August 25th (pm): ADMITTED TO CHILDREN'S HOSPITAL/BEGIN DILANTIN
Wednesday, August 26th: BEGIN CHEMOTHERAPY (BUSULPHAN/CYTOXAN/ATG)
Thursday, September 3rd: DAY OFF
Friday, September 4th: BONE MARROW TRANSPLANT
Hunter's sister, Harper Aaliyah
Although we are disappointed about our return to Los Angeles, we are thrilled to see our daughter. She has grown so much in just two weeks. She's started to crawl and tries her best to stand on her own.Tuesday, August 4, 2009
Waiting back in Los Angeles ...
We flew back to Los Angeles yesterday after speaking with the BMT team at the Hutch. Under the circumstances, we are happy to be home and reunited with our daughter, Harper. Here are the two most recent emails we received from them explaining the situation ...
First email:
"The donor we requested for product donation was HLA typed in a reputable laboratory, and was a 10/10 match with Hunter. However, the donor, as part of our protocol requirements, provided a fresh blood sample to our laboratory for HLA confirmatory typing to be completed. On Friday, I received an email message from our laboratory informing me that the confirmatory typing for Hunter's donor identified a discrepant typing result with the outside laboratory typing results, for the HLA-DQB1 loci (thus, one antigen mismatch with Hunter). I immediately telephoned our laboratory and had a conversation with our HLA specialist, who assured me that they will be typing this loci again, but felt confident their results were accurate. This is a very unexpected result. The donor's HLA-DQB1 in relationship with the donor's HLA-DRB1 is not even normally seen together."
"The good news is there are more donors that are a 10/10 match with Hunter. I spoke with the registry late on Friday afternoon, and we are moving forward with the donor processes with another excellent donor. This will cause a delay in the transplant date. We are hoping the delay this donor switch causes will not be too terribly long. As soon as we have word from the donor center, I will let you and your family know."
Second email:
"I already have good news. The donor center successfully contacted the new donor by phone. The donor is very excited to plan on moving forward with our donation request. This donor is a 19 year old female, 10/10 HLA match, same ABO Rh and CMV status of Hunter. We are requesting a bone marrow harvest/product transport date (for infusion the same day) of 3-Sept-2009."
If this donor is truly a match we could possibly be headed back to Seattle in a couple of weeks. Our fingers are crossed. Meanwhile, we will try to rejuvenate and enjoy our time with family and friends.
First email:
"The donor we requested for product donation was HLA typed in a reputable laboratory, and was a 10/10 match with Hunter. However, the donor, as part of our protocol requirements, provided a fresh blood sample to our laboratory for HLA confirmatory typing to be completed. On Friday, I received an email message from our laboratory informing me that the confirmatory typing for Hunter's donor identified a discrepant typing result with the outside laboratory typing results, for the HLA-DQB1 loci (thus, one antigen mismatch with Hunter). I immediately telephoned our laboratory and had a conversation with our HLA specialist, who assured me that they will be typing this loci again, but felt confident their results were accurate. This is a very unexpected result. The donor's HLA-DQB1 in relationship with the donor's HLA-DRB1 is not even normally seen together."
"The good news is there are more donors that are a 10/10 match with Hunter. I spoke with the registry late on Friday afternoon, and we are moving forward with the donor processes with another excellent donor. This will cause a delay in the transplant date. We are hoping the delay this donor switch causes will not be too terribly long. As soon as we have word from the donor center, I will let you and your family know."
Second email:
"I already have good news. The donor center successfully contacted the new donor by phone. The donor is very excited to plan on moving forward with our donation request. This donor is a 19 year old female, 10/10 HLA match, same ABO Rh and CMV status of Hunter. We are requesting a bone marrow harvest/product transport date (for infusion the same day) of 3-Sept-2009."
If this donor is truly a match we could possibly be headed back to Seattle in a couple of weeks. Our fingers are crossed. Meanwhile, we will try to rejuvenate and enjoy our time with family and friends.
Saturday, August 1, 2009
Dumbfounded
We received a call from Dr. Sanders, Director of the Bone Marrow Transplantation Service at Children's Hospital, at 4:00 yesterday afternoon. Shockingly, it turns out that Hunter's "perfect match" donor is actually NOT a "perfect match." We were so dumbfounded that after we hung up the phone with her we called right back to have the same conversation all over again. It didn't register the first time and, honestly, it still hasn't registered.
What does this mean for Hunter? We really have no clue other than his transplant is postponed, possibly up to four weeks. However, we all know that when a doctor says four weeks it's more like eight weeks, right? Anyway, they have to test the blood samples of other donors who are potential matches for Hunter to see who is the most viable option. We pray the donors are available and willing to move quickly versus being on vacation or something along those lines.
We are taking it one day at a time, in our own personal "holding pattern", until we meet with the BMT team at the beginning of the week. We are thankful Hunter's Hickman Line placement and bone marrow aspiration scheduled for last week were rescheduled for this week so he hadn't gone through those procedures yet ... not to mention also thankful Hunter hadn't been admitted to the hospital OR started chemotherapy!
What does this mean for Hunter? We really have no clue other than his transplant is postponed, possibly up to four weeks. However, we all know that when a doctor says four weeks it's more like eight weeks, right? Anyway, they have to test the blood samples of other donors who are potential matches for Hunter to see who is the most viable option. We pray the donors are available and willing to move quickly versus being on vacation or something along those lines.
We are taking it one day at a time, in our own personal "holding pattern", until we meet with the BMT team at the beginning of the week. We are thankful Hunter's Hickman Line placement and bone marrow aspiration scheduled for last week were rescheduled for this week so he hadn't gone through those procedures yet ... not to mention also thankful Hunter hadn't been admitted to the hospital OR started chemotherapy!
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