Day 2 official diagnosis

Sleeping at the hospital is virtually unheard of. They come and go all hours of the night and if your like me, you wake every single time the come in the room. But on the other hand if you are like my husband you can sleep right through about anything. Bella does not sleep well she wakes up every time they come in to check vitals. This is every 4 hours. Blood pressure, pulse and temperature. She makes me do them every time if she is awake. She screams "mommy do it". So of course I do it half asleep. At 4 they come in to draw labs. Which means they must draw blood. Luckily they get a good return from the I.V. so they don't have to poke her. But this does arouse her and she does not go back to sleep. She is up for good. Which also means so am I. Around 10 the doctor comes in to check on us and to let us know the bone marrow results are not back yet. She also says Bella will need another blood transfusion because her hemoglobin is at 7.2 and they want it to be at least 8. I have the doctor look at Gabbi because she does have a rash and we don't want anyone to get sick. She says just to keep an eye on it. At around 11 I notice her rash is considerably worse. I immediately call our pediatrician. They tell me they have an appt. at 2:40 which I take. Blood is ready at 12. It takes 2 hours to do the transfusion and she must be in the room at all times while they are transfusing because she must be monitored to make sure there is no adverse effects. When you are living at the hospital time really has no meaning so when I see that it is 2:30 I realize I must leave in order to make Gabbi's appt. This is hard to leave. Both of my babies are sick and I need to be there for both of them. I make it just in time. I am allowed to go in thru the back entrance since they are aware of my situation and we don't want Gabbi picking up an unwanted virus. They put me in an exam room and tell me he still has a few patients ahead of me but he will be with me shortly. As soon as they shut the door I break down. This is the first time I have been alone to process the information. You never think this would happen to you. Never in a million years. And I'm sure many of you reading this are thinking the same thing. And I hope and I pray no one has to go through what we are going through. But you know what we have a wonderful support system and an amazing family. I'm crying when they come in to take my co pay and I'm crying when I receive a text from my mom stating that Bella's doctor is ready to talk to us. I mean of course she is when I leave for an hour, now she is ready. I try to steady myself as I go out of the room. I tell the nurse calmly at first please can she have the doctor see us next. The results for my other daughter are in and I need to get back to the hospital ASAP. By now I'm bawling my eyes out, so she ushers me in the room and says he will see me next. He comes in 5 minutes later. We discuss Bella and he tells me how sorry he is. Then he examines Gabbi. He believes she has hand, foot and mouth. And even though she doesn't have diarrhea or a fever she can remain contagious for up to a week. Well thats just freaking great. Both babies are sick. They now can't be in the same room. What the heck am I gonna do? I have already spent more time away from her then I ever have Bella and now they want me to not see her during the day. Can this week get any worse? I make it back to the hospital where the nurses and doctors only suggestion for me is to pump. Gabbi must immediately leave the ward. Jess takes her out to the waiting area so that we can come up with a game plan. Now it's time to go with the doctor and nurses to discuss Bella's diagnoses. We head for the quiet room. A place to go when you just need a little time to yourself. A.L.L is confirmed. This is somewhat good news. We didn't want to hear it was another type as this is the best one, if you can use that word. Tomorrow would be when everything begins. They will place what they call a Power Port or a central line. They do this via surgery where it is inserted above the breast under the muscle. What this does for her is gets rid of the I.V. in her arm and makes a more safe line to give fluids, medicine, chemo, draw labs and etc. They will also begin chemo. This phase is called the induction phase. There is a total of i think 4 phases that lasts 3+years. This phaseq last for roughly 5-7 weeks depending on how the LP -lumbar puncture goes at the end of 5 weeks. During this 5 weeks she will be given 4 types of chemo. The first one being placed in her spinal fluid called the preventative measure. This will be done at the same time as the port is being placed after they draw some spinal fluid to confirm whether or not the cells have reached her central nervous system. The next one is called dexamethasone. This is a steroid that is taken by mouth twice daily. This drug cause people to have an increased appetite as well as have a road rage temper aka irritability. The 3rd one is vincristine. This is given weekly through the I.V. Most common side effects are nausea and hair loss. The last one is a shot called asparaginase. Known as PEG. This is done once over the 5 week period. We sit for a while longer going over our tentative road map for the next 8 days which solely depends on how she does. We ask a few questions and then we go back to the room. Later in the evening the surgeon comes in to discuss the placement of the port and how it works. He answers our questions and departs saying he will see you in the morning. Surgery is scheduled for 9. We settle in for another long night, hoping that maybe we can get some sleep.

"Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. " ~Matthew 11:28-29