THE JOURNEY THUS FAR


Reece was diagnosed September 7, 2004. He is on the protocol CCG 1991. A protocol is like a recipe or a road map. He will be on chemotherapy treatment for approximately 3 1/2 years. I know, that sounds like an awful long time. I get that reaction from most people. Most don’t realize the intensity and duration of the treatment for this type of cancer. Yes, Leukemia is cancer.

There have been many questions regarding Leukemia, treatment, blood counts, and remission. Let me try to clear up some of the confusion.

Leukemia sucks! Oh, sorry...Leukemia is a cancer of the blood and bone marrow. The bone marrow is where cells are formed. They start out as stem or baby cells. Normally these cells would form into healthy white cells. But with Leukemia, these cells don’t mature. They call these “blasts”. These “blasts” multiply very quickly and crowd the good cells. The blasts do not have the infection fighting properties that the normal mature cells have. The other cells, red blood (carry oxygen to the brain), and platelets (clot to prevent bleeding) are decreased as well.

Now, there are different kinds of childhood leukemia, and childhood leukemia is different than adult leukemia. Reece has Acute Lymphoblastic Leukemia. This type of leukemia comes on suddenly and spreads and attacks very quickly. ALL is the most common leukemia in children.

Reece’s prognosis is considered very good, it is at over 80%. That is excellent when you consider the fact that in the 1960’s, children who were stricken with this died within a few months. But then again, for a parent, 80% isn’t good enough. There is still much work to do to find that 100% cure!

I have had some people ask this question, “I thought Reece was in remission...so I thought he was fine now.” Well...Yes! Reece went into remission by day 7 of treatment. This is considered absolutely wonderful for prognosis. Remission means that the symptoms of leukemia have disappeared and there are less than 5% blasts found in the bone marrow and blood. If the treatment were to be stopped at this point, the leukemia would come back in full force. You see, leukemia starts with just one mutated cell. I think of it like some sort of strange spark that went off in his body. And since they cannot see all the cells under the microscope, all it takes is for one of these cells to spark again. We have billions of cells in our bodies, but all it takes is one. It would multiply like crazy and the cancer would be back. The chemotherapy must continue in order to kill all the bad cells that cannot be seen with the human eye. I have heard it put like this from other parents of kids with this: There is a tree growing out of the ground. You cut the tree down to ground level so you no longer can see it(hence, remission). Chemotherapy continues so to be sure the roots are killed and the tree cannot grow back.

So, Reece‘s treatment plan calls for 3 1/2 years. This is broken down into phases. The first phase is called “Induction” which is very intense and pounds on the bad cells. This was a horrible phase for Reece. He was very ill during this phase. The second phase is “Consolidation”. Reece did pretty good during consolidation, except for the droopy eye and constipation. The next phase is called “Interim Maintenance”. This is a little bit lighter treatment and Reece did very well during IM. In fact, at times you wouldn’t have known he was sick except for his lack of hair. The next phase is “Delayed Intensification”. It is the most intense of the protocol and Reece was delayed 1 week in starting the second half of DI due to low counts. This phase caught up with him on the last day of it. Reece developed a fever and we landed in the hospital for 1 week. Reece does all this treatment at the cancer clinic at UNC Hospitals weekly. He also has complete blood counts done at least once weekly, sometimes 2-3 times weekly. We got through Interim Maintenance which was our last phase and we have now moved into “Long Term Maintenance”. This phase will bring us into monthly treatments for a little under 3 years. Notice the phase name: “Long Term...”!

Ok, so what do we do at clinic every week? Chemotherapy, as stated above. This can be in the form of oral, IV, intra-muscular, subcutaneous, and intra-thecal. Yes, he gets that great big needle stuck into his spine where they inject the chemotherapy medicine. They have to do this because the central nervous system is another place where the leukemia can present itself. They also take some fluid out to check for leukemia cells. We spend anywhere from 3 hours to 8 hours at clinic in any given week. We see the doctors and have a CBC done as well. If he needs a transfusion, the CBC will show us that, and he stays for that.

The chemotherapy drugs are what makes Reece so ill and lose his hair. He is on several different drugs. Other symptoms of these liquid toxins are: vomiting, low blood counts, which ultimately can result in blood transfusions. Reece has had a couple red blood and platelet transfusions. The chemotherapy drugs are not smart enough to know the difference between the good cells and the bad cells. So while the chemo is killing the bad stuff it also affects the body by attacking the hair follicles, skin, mucous membranes, etc. It produces lots of nausea (which thankfully has minimally affected Reece thus far). When Reece is on steroids, his face and body get very puffy, and it can affect mood and behavior too.

When Reece has been off treatment for several years, he will be considered “cured”, or in complete remission. This brings us to another topic of question. Some have asked us about bone marrow transplants. Hopefully Reece will never need one because that would mean that the chemo isn’t working, or that he would relapse. We, here in cancer-world, call that the “R” word. This is something that every parent here worries about, tries not to think too much about, but we are very aware of it and are very watchful for any signs of it.

That sort of sums it all up. We do hold on to our faith. We do believe that God has a purpose and a plan. And we believe that God will work good out of this terrible thing that has started us on this unwelcome journey. Please continue to pray for us and Reece. Please donate blood whenever you can. Another thing you can do is sign up for the American Bone Marrow Registry. This will determine if you are a tissue match for someone who needs a transplant. Sometimes this is a child’s last hope. And there is only a 30% chance that a sibling will be a match, and a smaller percentage that a parent is a match. And also, help us put out the awareness of childhood cancer, because like I said before: if you have a child with cancer, anything less than 100% is not good enough! We need to “Reach the Day for A Cure!” as said by the National Childhood Cancer Foundation.




"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you." (Jeremiah 29:11-12

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Tuesday, November 13, 2007

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