January 4, 2011

I have so many stories and random information that I would love to share with you all, but so much transpires during the day that make it hard for me to write a blog post every day. Not to mention if I wrote everything down it would be more like a short story or book instead of a blog post. I do want to share a few updates and hopefully before this is over I will be able to share some of the others items with you as well.

For those of you that don’t know, Johns Hopkins is a teaching hospital. On the pediatric oncology floor, there are nurses who are the front line of care for Grayson. All of these nurses are required to have at least a B.S.N. Bachelor’s of Science in Nursing and then they go through an orientation/training program where they are given the most complicated cases on the floor and tend to those children under the directions of their preceptor (trainer). This is just background to let you know that they are educated and qualified to care for my son. Then we have Residents on our floor. Residents are doctors who have completed medical school and are now in their training period for practicing medicine during which they rotate through the different specialties trying to learn the basics of each and then decide which specialty they would like to pursue. They are technically doctors but have only been practicing medicine for a year. Our floor only takes 2^nd year residents and while they have had 4 years of medical school and 1 year of practicing medicine, none of them have practiced oncology until they get to this floor. So essentially we have 1^st year oncology doctors who are on the floor 24/7. Then there are Fellows. These doctors have completed their residency and chosen oncology as their specialty and are now in training to become oncologists. They are on the floor during the day and then on-call at night. The highest qualified doctor in oncology or any specialty is the Attending. They have already been through med school, their residencies, and their fellowships and are now practicing oncologists. These guys we typically see in the morning for rounds (about 15 minutes) and then we never see them unless there is a big problem. I go through all this background to let you know that while we are at a world-renowned hospital with awesome doctors, we unfortunately don’t see the awesome ones unless there is a problem. What does this mean? Well, it means if I have questions about a lab result or symptoms that I may see in Grayson, I have a nurse or a resident answering my question. This would be okay if it was a general question, but due to the complexity of his disease my questions are anything but general.  

The important part to all this (MEN START READING HERE): When our nurse came in and told us Grayson’s blood typing had some B+ red cells in them she told us this didn’t mean that he was necessarily engrafting yet (Gavin’s stem cells creating new healthy cells in Grayson’s marrow), but that it was a good (actually she said “great”) early sign.  I asked a resident to explain what that meant and he said it could be the start of engraftment and that it was a good early sign. I spoke to a fellow and she said that she was confused by the appearance of red blood cells because Grayson is still neutropenic (no white blood cells) and the first stem cells to engraft would be white blood cells. Red cells are the last and since he has no white cells it didn't make sense that there were red cells. She told me to ask an Attending. When I finally asked the attending today, he explained that he would not take it as a good or great sign at all. He said that red blood cells have the longest half life (they last the longest in our bodies) and that even though they tried to eliminate the majority of Gavin’s mature red blood cells out of the marrow before giving it to Grayson most likely the mature red cells that were found in the blood typing test were just left over from the transplant and this is not something we should get excited about. Also he mentioned that the blood typing tests are incredibly sensitive, so even if there was one left over red cell of Gavin’s in the sample it would have caused a “non result”. The tests came back today that Grayson’s blood type was still O+. All of this is to say that ATTENDINGS ARE TOTAL BUBBLE BUSTERS!

I have been told by many of the attendings now that I really need to e-mail them the majority of my questions unless it is basic because Grayson has a disease that most people on this floor haven’t seen and while the residents and nurses may attempt to answer my complex questions, the answers aren’t necessarily accurate. SO REASSURING ;) 

This is why I have to have faith in God and not in man because even at Hopkins not everyone knows what they’re doing and to be honest they are all human and capable of making mistakes. This is why as a mother I watch like a hawk but pray even more than that! This is also why the prayers of all of you are so important and critical for his care. Please continue to pray for wisdom and discernment for all of our doctors and nurses.

Next, Grayson was taken for a CT scan and ultrasound yesterday because despite the powerful antibiotics he is on, he spiked another fever. They were suspicious of a fungal infection and wanted to see if they could see an actual fungal infection in the lungs, liver or kidneys. His test results came back with no evidence of a fungal infection however, they cannot rule it out. Fungal infections are very dangerous because they can be extremely hard to get rid of and can be deadly in a baby with no immune system. They are most likely going to put him on Ambizone which is the most powerful antifungal available but it is very hard on the body. They will need to watch his kidney’s very closely because he is on so many medications already, plus IV nutrition that make his kidney’s have to work very hard. Adding this new drug that is notoriously hard on the kidney’s makes his risk for problems that much higher.

In addition to this, Grayson’s ultrasound showed that his liver was even more enlarged than when he had started chemo. Tom and I were under the assumption that his liver and spleen which were engorged prior to chemo had gone back to normal size. We thought this because a resident and a fellow felt them and said they felt normal. The enlarged liver and slightly enlarged spleen could mean a host of things and might be nothing to worry about, but the liver might be showing early signs of VOD. If you look at my prayer request list this is a pretty big risk of bone marrow transplant. It is also the scariest in my opinion because of the lack of treatments for it. Grayson is retaining fluids right now, gaining weight and his girth (around is tummy) is climbing.  The breakdown of his liver enzymes is also climbing. All of these things I watch closely (I get copies of all of his lab work and know how to read them now). The residents and fellow said they are watching him but would be more concerned with large jumps in these things. I expressed my concerns with the rising levels of all of these things to the attending today and he said he agreed that they were cause for concern and they went ahead and recalculated how much fluid he needed at this point and how much he was actually getting and he was getting more fluids between medicine, blood transfusions, etc. than anyone originally thought. So, they are cutting his fluids back starting today and giving him a diuretic to get rid of some of the additional fluid he is storing.

Cutting back on fluids is one way they can prevent VOD and make sure no additional fluid is leaking into his lungs, but they also need to make sure they are giving him enough fluid to flush his kidneys of all the medicine’s (especially if they start Ambizone) that it doesn’t cause problems with his kidneys.  I am informing you of all this because I believe prayer for his organs (LIVER, SPLEEN, LUNGS, and KIDNEYS) are so important right now.

Because I believe so strongly in the power of prayer I am pleading to you all to send this blog site to one person and ask them to please pray for my baby boy. He had a good moment this morning where he actually sat up and smiled and even tried to talk a bit which sounded hoarse but was wonderful to hear. He is so sick the majority of the time and I want to be able to see my son smiling and talking again. So PLEASE pass this on and ask someone else to pray for him. You all are going to see how God is faithful through this and how he answers prayer.

I am so thankful for all of you reading this and for your caring hearts. Thank you for sharing the pains and joys of this situation.