Wednesday, September 22

Collin was diagnosed five months ago today. In some ways I can't believe it's already been that long, and in others it feels like this journey has barely begun and that there is still such a long road ahead. Today we met with Collin's oncologist to learn about the upcoming round of chemo and the transplant. Tonight I am exhausted and overwhelmed. We learned about what to expect medically during the next round-the drugs, the side effects, the risks, etc. We also were given an idea of the things we'll have to do to prepare for admission to the hospital, but since I now have a meeting tomorrow where I will be given another binder full of information and details, I won't go into that stuff until tomorrow.

Collin will be admitted to the hospital in the afternoon on October 4, which is known as day -9. On that day he will receive intravenous gammaglobulin (IVIg), which is a blood plasma product that helps boost the body's immune system. The first time he received IVIg he had a very scary reaction during the infusion, but since then it is infused very slowly and he has had no problems.

Over the next three days (days -8, -7, and -6) he will receive the chemo drug Carboplatin, which will be infused over four hours each day. At high doses this drug can cause deterioration in hearing or kidney function, as well as deterioration in liver function. These side effects are rare; however it does cause nausea, vomiting, and diarrhea.

Over days -5, -4, and -3 he will receive two drugs, Thiotepa and VP-16, aka Etoposide. Thiotepa may cause mucositis resulting in mouth sores, inability to eat, and diarrhea. It will also cause temporary nausea and vomiting as well as loss of apetite. It causes temporary darkening of the skin with redness, soreness, and skin sloughing in some areas such as the buttocks, groin, back and armpits. This can last up to a month. Unlike the other chemo drugs that are excreted through the urine, the Thiotepa is excreted through the skin, so for the three days it is given and the two days following the last dose, Collin will need to be bathed every six hours. That is twenty baths in five days. Every time he is bathed, his clothing and bed linens will need to be changed as well. We will have to wash our hands before and after we touch him, and wear gloves to handle any bodily fluids. The VP-16, which Collin has had before, will also contribute to the mucositis, and can cause low blood pressure.

These three drugs together are expected to cause severe mucositis. Almost every patient who receives this therapy will be unable to eat and require IV nutrition and narcotics. The mucositis could potentially be so severe that the patient would need to be intubated to protect the airway, but the oncologist said she has only seen that happen once. The combination of the three drugs at high doses can also cause a form of liver damage, but they try to prevent this complication with the use of a low dose heparin drip and very close attention to fluid balance, and the oncologist does not expect this complication to occur. The drug regimen can also lead to multi organ system failure which is usually fatal, but this complication has almost been completely eliminated through modifications of the drug doses related to kidney function. Next week when Collin has his next MRI, he will receive a catheter through which we will do a 24 hour urine collection to test his kidney function. This test and a blood test will help them dose the chemo properly for Collin to prevent this outcome.

Days -2 and -1 are days of rest between the chemo and the transplant, to ensure that the healthy stem cells are not introduced into a toxic environment and damaged.

On day 0, October 13, Collin's stem cells that were collected on Memorial Day will be transplanted back into his body. The stem cells have been preserved and frozen, and will be thawed at his bedside and infused over an hour. Rarely the infusion of peripheral stem cells can result in breathing difficulties from clumps of cells being trapped in the lungs. Many patients get nauseated during the infusion from the preservative used in storing the stem cells. On day +1, another infusion of stem cells can be given if needed, but the oncologist doesn't think it will be necessary. The remaining stem cells will be kept frozen for up to ten years, in case Collin needs them in the future.

Day -1 to day +7 to +10 is called the Aplastic Phase. Collin's white blood cell count will be 0, there will be severe mucositis, and he will need multiple blood and platelet transfusions to minimize bleeding from the mouth and gut. He will need morphine to control pain, and nutrition will be provided intravenously. He will be at very high risk of infections.

Day +7 to day +21 is the Recovery Phase. New cells will begin to grow and the WBC count will begin to rise. The mucositis in the mouth and gut will heal. Antibiotics will be discontinued and the need for pain meds will stop. He will begin to eat again. Most patients are discharged from the hospital during this time. Before Collin comes back home, the house will need to be cleaned thoroughly, carpets cleaned, furnace filter cleaned, etc. We will need to replace the air filter in our car, and only re-circulate the air in the car, not draw in outside air. There is probably much more to this that I will learn about tomorrow.

Day +21 to day +100 is the Outpatient Recovery phase. Collin will continue to make progress and will be followed as an outpatient. His immune system will be quite immature and the risk of infection is high. At some point he will most likely be readmitted to the hospital with a fever. Because his immune system will be so vulnerable, he will need to stay in relative isolation, only leaving the house for medical appointments. He will need to wear a mask when he leaves the house. He cannot be around anyone who is sick, or has been in contact with someone who is sick. He cannot be around anyone who has recently had a live vaccine, or anyone who hasn't been vaccinated. He cannot be around anyone who has shingles or chicken pox, as this could be life threatening. We have to move houseplants to an area he will not spend time in. Fresh flowers, fruit baskets, etc. will not be permitted in the house because of risk of bacterial infections. His food will need to be freshly prepared; he cannot have restaurant food that would have been handled by multiple people. We will most likely have Bailey stay with his cousin for a while so that he can't lick Collin. We won't be able to attend the activites that lead up to THON, but his doctor feels that by February he will be safe to attend THON. There are many more rules and precautions we will need to follow that I will learn about tomorrow.

The oncologist also told us today that once Collin doesn't need blood transfusions and frequent lab draws, his Broviac will be removed because it is a constant risk of infection. She said she is considering keeping him on maintenance chemo for six months once his counts have recovered to hopefully help prevent relapse. Since the chemo would need to be administered intravenously, she would put in a mediport, which is an appliance placed in the chest under the skin through which chemo can be given and blood draws can be done with less pain than a typical needle stick, and it has a lower risk of infection.

I'm sure there is information from today that I have forgotten to include tonight, and I know I'll be getting a lot more information tomorrow. It is a lot to digest and wrap my head around, and I'm exhausted. The thought of Collin being as sick as he was during the first two rounds of chemo, or having to go through Morphine withdrawal again, or losing interest in food after we've worked to restore his interest in eating breaks my heart. No child should have to endure this, and no parent should have to watch their child suffer.