Donations

Many people have been asking where they can make donations to for Bella and her care, that includes gas, medicines, co-pays, the list goes on and on. We have created a donation button through the blog that takes you to PayPal. If anyone is interested in doing this you may do it through there, But please no one feel obligated. God is in control and he will provide one way or another. (Note: in order to see the donate button on iPhone or other smart phone you must scroll all the way to the bottom and select view 'Web Version' this will open up the full version and the donate button will now show at the top)

"I am leaving you with a gift - peace of mind and heart. And the peace I give is a gift the world cannot give. So don't be troubled or afraid."~John 14:27

Food Tithing

My friend Candice has set-up a food tithing if anyone is interested  in doing this. Thank you everyone for the continued support. We have a long road ahead but we can see the light.



http://www.foodtidings.com/SignUp.aspx?ScheduleGuid=cbf1bf91-9698-4ffe-8c33-d0f1f1ea8854

Days 4, 5 and 6

Days go by in a blur, so remembering what goes on is hard. It's like you are living your life but u are watching from the outside in. Bella is doing well the side effects have not presented themselves yet and she seems to be a normal kid just living at the hospital. On day 4 she has to have her dressing cleaned. We have to take her into the sterile room and hold her down to do it all the while she is screaming away. I'm the one who goes in with her. Im the only one who can handle the cries of pain which is very hard to bare but someone has to do it and I know Leo could never bare it. After this is complete she gets to go to the toy closet and pick out something special. You can tell the incisions are bothering her. Imagine having surgery and then you not receiving any pain medication. Yep that's how it is for her. All she gets is Tylenol. I mean she must be hurting right? I try to stay on top of the nurses and make sure they are giving Tylenol every 4 hours. She can no longer take ibuprofen. Apparently it can mess with people's blood count, so we must stay away from it. Day 5 begins at 4 am. I wake up to thinking Bella had peed out of her pull-up because she is soaking wet and so is the bed and the floor. It is literally everywhere. I mean this is a high probability since they are pumping her full of fluids all day and night. So I wake Leo up to help me get get cleaned up and I call the nurse. Leo goes I pick her and her iv snags. Apparently sometime between 12am and 4am she has deaccessed herself. What this means is she has somehow pulled the needle they use to insert iv's out of her chest and out of the port. And all that fluid is actually iv fluid. Not pee. I call the nurse again 911 this time. They all rush in and take out the needle. They must get the sterile room ready so that they can re-access her. There is no time for the numbing gel. That takes an hour to start working and we don't have time for that. The longer we wait the more at risk she is for infection. And since her counts are all low she is bleeding quite a bit where she ripped it out. Finally they are ready for us. I'm the one who goes in with her again. This time is pretty much the same and consists of mainly screaming. Mostly I think she is scared and holding her down does not help. We all wear masks since this is a sterile environment. They clean it off, spray it with freeze spray and then reinsert the iv. I'm sure this has to hurt and I would give anything to take away her pain, but all I can do for her is be strong and be there when she needs me. We go to the toy room to pick out her surprise. She picks out some princess puzzles we go back to the room to try and sleep. We don't get much sleep after that and she is very weary of her port. The next morning Gabbi is granted access to come back in to the room. Everyone is ecstatic including Bella. She loves Gabbi so much and when she sees her, her eyes just light up. Sunday marks the day to receive the PEG shots. They put numbing cream on an hour before and then we head back into the sterile room. She already knows what this room means. This is the room where the 'owies' happen. She begins screaming the moment we walk in. They have me sit on the bed with her facing out. It's very quick. And since she must have 2 doses they do one in each leg on the count of 3. We then get to pick out another toy. She is kind of over this idea, but she picks one out anyways. The shots go over well. No allergic reaction. Bedtime arrives and we all settle in for the night.

"For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope." ~Jeremiah 29:11

Day 3 -Surgery and starting chemo

The day starts with the surgery being moved from 9 to 12. This isn't a problem except Bella didn't eat on Tuesday because of her bone marrow test and she can eat today till after her surgery. This is extremely difficult. Everything she sees she wants to eat. It very hard to say no to water and food. So we try to entertain her by playing, seeing the trains and doing whatever works. One of the things that we find entertains her is letting her paint everyone's nails. The only nail polish we have is red so by the time she has finished with us, we all look like we are bleeding. Finally at 10:30 they come to take her to surgery. She must first go to pre-op so that they can check her vitals and we can sign the consent forms. She has been awake since 4 so she falls asleep for a bit in the room. All the doctors come in to talk to us. Just to again go over the plan. She has to have another platelet transfusion even though her numbers are good they are not good enough for surgery. This is done while we wait. Finally it's time to take her back. No one is allowed to go back with her. This is hard cuz she is just so young and does not understand what is going on. Luckily they have people on staff called child life specialists that are there for the kids. They try to make it fun for her as they set out to go look for more stickers. The surgery itself takes about 1.5 hours and then she must recover in the post op for at least 30 mins. So we head to the cafeteria to try and eat a bit while we are waiting. We head to the waiting room around 12:45. We know the doctors will be coming out to talk to us as soon as they have finished. First the port surgeon comes out. She did great. The port has been placed with no complications. She is still in surgery receiving her first round of chemo and getting the LP- lumbar puncture. A while later the other doctor joins us. All has gone well. We hope to have results back on her LP later this evening. He will come talk with us later when he gets them. A short while later they take us in to see her. She is already awake and very disoriented. Crying and screaming for us. She is flushed and very sweaty. I go straight to her and love on her. Then daddy gets a turn. They bring in a rocking chair that we are able to use and she immediately falls asleep in his arms. This is probably the most difficult thing I have done yet. I want to be the one to comfort her and hold her. She looks so sad but I know that Leo also needs to hold her and be able to comfort her. They come in to do the X-ray to confirm the port is placed correctly and no issues have arisen. She immediately falls back asleep. Her pulse and heart rate are high so we must stay a while longer in recovery. When its time, we take her upstairs in the bed and surprisingly she sleeps through it. She wakes around 4 famished. She eats everything in site and we are glad. Then then give her 2 rounds of chemo. One through her iv and the other is oral. We are just glad that things have gone well and we have finally started the long road to recovery. Side effects at this point are minimal so we settle in for the evening praying yet again for some rest.

"He gives power to the weak
and strength to the powerless.
Even youths will become weak and tired,
and young men will fall in exhaustion.
But those who trust in the Lord will find new strength.
They will soar high on wings like eagles.
They will run and not grow weary.
They will walk and not faint."~Isaiah 40:29-31

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