dreaded g

Sorry for the delay, it's been hard to start writing about this experience. I was on a roll last week and the break has really created writers block. The memories are there, but trying to express how I felt seems so difficult. 

It's been a rough week. Our St Jude family has lost another precious child to cancer, AML, an aggressive form of Leukemia. Unlike ALL, AML is more difficult to treat. 

Please keep these families in your thoughts, prayers and hearts everyday. We are all battling heartache, so remember to be sensitive to others. 

Day +5 Bailey started to receive the g-shot. I spoke of these a few posts back. She needed them for cell collection. They boosted her white blood cells in the bone marrow. The regimen of chemotherapy that she received wiped out her immune system. Your ANC is a number that tracks your immune system based off a formula using cell counts. I'm not going to try to explain, I have no idea how. I just know that 500 and below requires the kids to wear a mask. Ours, on average, is probably in the 4,000+. Bailey's dropped to 0. The goal was for the chemotherapy to kill any cancer cell in her body. However, while doing so, the drugs kill her fighting cells too. Now her body was vulnerable. A common cold could kill these children. It's very serious. 

The shots started to once again boost the marrow production. She had received the infusion of her frozen cells, but they don't work overnight. They're playing catch up. So until those cells started grafting, she needed her body to do some work as well. I need to add that our sweet baby was not given g via shots, it was through her IV. No pain from the needle, but definite pain in her back and legs. 

She would continue until her ANC reached 2,000, maintained for 2-3 days and then stayed above 500. This took 2 weeks to achieve. Every morning I woke up hoping for that special number. She eventually got there.

{While having no immune system you feel pretty bad my friends.}

{She wanted me to lay with her so badly, but I couldn't. So we snuggled up on my 35 week baby belly. I laid one blanket on me, in case she got sick. Then she covered up with another. Her fevers kept her "cold" and all those blankets kept me hot. I survived eating cups of ice.}

{That smile. It's still there.}

{They really encourage the kids to get out of bed when they can. It's a very frustrating process. Let's make you feel like complete shit, sorry it's true, but then get out of bed so you don't end up with bed sores.} 

Like most kids, Bailey developed mucositis. Mucositis is the painful inflammation and ulceration of the mucous membranes lining the digestive tract. This tract goes from mouth to bottom. Chemo kills rapidly producing cells. The tissue that lines the mouth is the most sensitive part of the body. This can be very debilitating and lead to other complications. Most commonly, pain, inability to eat and increased risk of infection because of the ulcers. 

There are a few different systems, Bailey suffered from the following:

-sores in the mouth and throat (on the gums or tongue) 

-pain in effected area

-difficulty swallowing or talking

-white patches on the tongue

-increased saliva

-blood in mouth

-stomach pain (ulcers lining her stomach)

Bailey handles pain better than anyone I know. For her to ask for any pain medicine is a clear indicated that her pain level is a 15 on my scale. They started her on a morphine pump. It ran continuously and even allowed boosts. These were times she could push for an extra dose. She remained on the pump until she left. 

While trying to deal with the mucositis, which would improve once her cells began to engraft, she was still experiencing side effects of the chemotherapy. 

Vomiting and Diarrhea. Imagine how painful this was for her. Anytime she was sick, it was accompanied by blood. And tears, from mom. 

September is childhood cancer awareness month. Please consider making a donation to St Jude in Bailey's honor. A $15 donation gets you a t-shirt, if you have enough, we will gladly donate to a family at St Jude. 

Donate for Bailey {click the link}