Movin' on Uuuuup!

1/9/2009 Saturday

So we have been giving Will daily doses of GCSF through his Insuflon Catheter in his arm. On Tuesday I took Will to the Hem/Onc clinic where the nurse had me administer the GCSF into his Insuflon Catheter by myself for the first time. It was a little scary, but I didn’t have to poke him so that was good!

We had a home care nurse come out to our house on Wednesday to set us up and make sure that we were able to administer the medicine on our own. Of course there were a few snags first…

I called the nurse to set up a time for her visit and told her that we needed to take Will to get his CBC finger stick first. She was very nice and said that she was very flexible with her time for the evening. She said to call her when we arrived at home (so we could make sure the GCSF medicine had been delivered to our house).

We got home and OF COURSE there were no meds here! Paul started calling numbers and found that the order was prepared by some form of Walgreen’s Pharmaceuticals. They said that the package had been sent to FedEx and should have been delivered to us. Paul then called FedEx and started trying to track down the box. It turns out that the package was addressed with White Bear Lake’s zip code (similar to ours) and so the package went to White Bear, was then shipped back to St. Paul, and sat there for the rest of the day because all of the trucks had already gone out for the day. They basically said “Sorry but you won’t be getting your package today.” Paul made it clear that thanks to them we would be packing our bags for a trip to the ER so our son could get the drug they were supposed to deliver. Luckily the office was still open and so he drove to downtown St. Paul and picked it up himself and SAVED THE DAY!

The nurse was wonderful at checking on us, answering questions, and making sure we knew what we were doing as far as the GCSF goes. We had a nice visit with her and she was wonderful with Will. She brought him a froggy stuffed animal donated by a patient’s foundation for kids who are sick during the Holidays. She even pretended to try and climb in his Johnny Jump Up while we gave him his dose of meds to distract him. Will thought it was really funny!

So now for the good news!!!

On Wednesday we took Will for his CBC, but I didn’t get the results until Thursday. It turns out that the GCSF (Granulocyte Stimulation Factor…meds that raise Will’s Neutrophils…which are the white blood cells that are low in his system) is WORKING, especially now that he has been getting it in subcutaneous form (under the skin instead of through an I.V.)! His ANC (Absolute Neutrophil Count) was 3,606! Remember that 1,500 is the bottom of the normal range.

Today we calculated the results of his CBC that was taken yesterday. His ANC is now 8,606!!! The drugs are working and his body has Neutrophils right now so he is able to fight any remnants of the infection that would remain from last weekend’s drama.

I got a message from the Hem/Onc clinic saying that they would like us to continue the GCSF until Tuesday and then hopefully we can stop it for a while to get back to the blood study where we poke Will 3X a week to find a baseline of his typical neutrophil counts (ANC). They also told us that hopefully we will get the results of our genetic testing by the end of the next 3 weeks.

Will's abscess seems to have healed nicely. The swelling is down, the redness gone, and the would looks closed again. He still has has no fevers (HOORAY!), and he seems overall very healthy right now.

It is fun to type a blog entry that ends on a positive note. Especially when I don’t have to start any sentences with “At least…” or “On the bright side…” We will continue to think positively and believe that the end is in sight. Thank you for all the wonderful things you do for us and for others. It is amazing to see what great people are in our lives.

(Oh and I don’t want to jinx ourselves about Will’s sleeping patterns so I WON’T say that things have been going much better right now!)

All our love,

Mr. Mrs. and Mini Moeller