12/11/2009

12/11/2009 Friday

Today has been a down and then up day for us. This morning was rough. We started off with them trying a blood draw attempt which failed and upset him. Then a surgeon came in to check on William.

I thought he was coming to check his hip bones for the Bone Marrow Biopsy that was scheduled for 2:00 today. It turned out that he was here to look at Will’s incision from yesterday’s surgery. He really liked what he saw and decided at that moment to remove the wound packing/dressing. I wasn’t prepared and William freaked out. We calmed him down but they came back soon to try the blood draw again. We were feeling a lot of stress about the events of the day.

We talked for a long time with an infection specialist who is highly regarded and later with our Hematologist. They spent a lot of time carefully explaining the upcoming procedure and the possibilities we may face. They listened to every question we had and were SO thorough with their thoughts and plans. By 2:00 we were feeling ready head to the Bone Marrow Biopsy. William developed a fever right about then and has had a bit of a worsening cough today but they said he could still go to the procedure. They had to put him under again like yesterday and I was allowed to carry him into the operating room and stay with him until he went to sleep. (That took about 2 seconds).

The Bone Marrow Biopsy is where they stick a long needle into one of his hip bones and basically take a “core sample of the bone and marrow” then they draw out a few teaspoons of marrow. It would be extremely painful if not for anesthesia. The person who did the procedure said everything went great. They were able to do some blood draws for other testing during that time as well to minimize the pain Will would endure.

Then they took us to Radiology to x-ray his chest to make sure it was clear from pneumonia. He did well with all of these things and was returned to us as a sleepy but happy and cuddly boy.

This afternoon he nursed well and took some long naps. We felt more relaxed already knowing that we made it through the tough stuff for the day.

The Hematologist came to see us a few hours later with some very preliminary results of the Bone Marrow tests. (We will not know more though until next week). She was happy to say that she had not real exciting news other than that they could definitely rule out Lymphoma, and Neuroblastoma. They are also probably 99% sure that it is not Leukemia either, but there is one other test they HAVE to send off before they can officially call it clear. (FYI they have been saying all along that they did not believe it was any one of these cancer types, but it felt great to physically cross them off of the list). It’s amazing how you can still worry about these things even when they say it is probably not the cause of his Neutropenia (Low Neutrophil count).

The Hematologist explained that what they found today is that in William’s bone marrow was that it IS making white blood cells. It is making the specific cells that eventually develop into Neutrophils (The white blood cells that help eat infections) and they currently exist in his marrow. The issue is that these cells aren’t “Growing up” as I would say and making their way into his blood stream where they can actually do their job.

There could be a few different reasons for this…
-The first is that he could have a condition where they never “grow up” and his Neutrophil count is always low.
-It could be that sometimes they “grow up” and sometimes they don’t which would mean that his Neutrophil count is cyclical going from normal to then dropping too low etc. on a cycling basis.
- Another option is that when William got a virus (possibly the suspect H1N1 he had at the end of October), it could have wiped out his bone marrow’s capability to produce proper white blood cells. (This happens with viruses). It could be that a virus like H1N1 could be strong enough to wipe out his system this long. We could now be trying to take a look at his marrow restarting its job of making these cells and that he is only half-way back to normal. Meaning that his marrow has not gotten to the point of “grown up” Neutrophils being released into his blood stream. This scenario is not as clear and possibly not as likely but they say that with things like H1N1 they do not know every single capability it has. We may never know if H1N1 was the true culprit now because there is no real way to go back and see if he did indeed have H1N1 in Oct.
-The last scenario I know of right now is that as the cells that “grow up” into Neutrophils, pass into his blood stream William’s body could be producing an antibody that is killing them off. Our bodies produce antibodies when we get sick that fight germs. Very rarely, but sometimes our bodies will see the bad germs and lump some of our good cells like Neutrophils together and produce an antibody which kills them both. That would then make his Neutrophil count low.

All of these scenarios result in a low Neutrophil count which again is dangerous because it prevents William from fighting infections on his own.

We will now have to wait at least a week or many more to find out if William has a congenital condition (caused by genetics) or an acquired one. There are many names for different variations of Neutropenia.

Tonight we started a drug called GCSF (Granulocyte stimulation factor) which should help William to begin raising his Neutrophil levels (and help to fight the infection he has). We couldn’t have started this before the marrow biopsy as it would have skewed the results. AND they did not want to do a bone biopsy unless it was necessary, but as his levels were still so low last night they made the call to do the biopsy.

The hope for this weekend is to keep him here in the hospital to do two things: get him on the best antibiotics to fight the infection and get him closer to being well, and to raise his Neutrophil levels so that he is in the normal range so he can fight infections and protect himself from them too.

We will learn later if he will need the GCSF drug to regulate his Neutrophils all the time or not. (That could mean us giving his a shot every day at home).

Tonight we had a few visitors (we actually got in trouble for exceeding the limit). We are only allowed 4 visitors a day and Paul and I count as 2 of the 4. It was nice to see some of the outside word though. William drank milk and ate solids ravenously this evening. He played a bit and cuddled too. He is very tired from a big day though. Paul and I are praying that we will soon see the constantly smiling little boy we know. It has been extremely tough being with a William we don’t know as well and we know it must be SO tough on him. We can’t wait to see the crazy man in his Johnny Jump Up again soon!

Thanks again for all of your concerns, wells wishes, prayers, and love.

XOXOXOXO
~Katie, Paul, and William Henry Moeller