Fevers hanging on

We have no news on Bella. We are still in the hospital and they are still running tests to try and diagnose the fever! Pray they can find the cause and send us home. We are going on week 4 in the hospital. Fevers come and go when they want and Tylenol does not help lower them even though we continue to try it. Baths and wet wash clothes do help. Also doc has allowed Motrin twice daily at least 8 hours apart but we can't have it after tomorrow because not all doctors allow Motrin because it's messes with your platelets and tomorrow we get a new doctor. All blood cultures have so far been negative as well as 2 urines, a stool and 2 cat scans. Despite the fevers she is getting better everyday. Yesterday she played a little in the playroom, she has been asking to use the potty again and tonight she threw coins in the fountain and has been sitting up by herself. Like I said before it's like having a newborn all over again and accomplishing the milestones again. Today they started her on an anti fungal medicine in case she has a fungus growing somewhere. Right now it's just a waiting game to see what happens.

"Let the peace of Christ rule in your hearts, since as members of one body you were called to peace. And be thankful." ~Colossians 3:15

Fevers at their best

Of course when we receive clearance to head home within the next few days, she spikes a fever. 102.9 at 11:30pm. If I was tired then I was completely awake now. All was going well before then. Procedure went well and preliminary results from bone marrow did not show any abnormal cells. Complete results will be in early next week. We were discussing going home this weekend and they had even changed her meds to prepare for this. I was exhausted from the night before because she decided she wasn't tired and stayed up until 3am requesting Mac and cheese and demanding that I call in an order on the phone even though they were closed. Not to mention she wasn't allowed to eat after midnight. So shorty after 8pm we all passed out. We woke up around 930pm and she was in pain. They brought medicine, did vitals and we settled back in. At 11:30 I requested some more meds for her and they did her vitals. I ask what her temperature was, as I always do and she replied 39.4. 39 what I say? The nurse says 39.4c which is 102.9f. It seems the steroids may have been masking a fever after all. She talks with the on call doc and he chooses to do nothing but get blood cultures because she is already on 3 of the strongest antibiotics they use. They give her Tylenol to reduce the fever though an hour later it's still the same. Some time after 2 we fall asleep and are awaken at 5 to take another temperature. Back to 102.9. More Tylenol and pain meds. She comes in an at 6:45 and the temp has risen to 39.9c which equals a whopping 103.8f. Well great I think, the Tylenol isn't working. They want another blood culture since its at a high peak. She falls back asleep and even though I am exhausted, I just lay there thinking of all the awful things that could go wrong. The surgeon comes in to check on us at 8 and learns of the fevers. He checks her bottom but that still looks good. Dr. Graham has decided to run some more test and change antibiotics. He will run a CT of her abdomen as well as her chest. He also is checking on her pancreas as that is a side effect of 2 of the chemos she has been given. We still know nothing as of yet. CT scan is scheduled for noon. Keeps us in your prayers!

"Cast your cares on the Lord and he will sustain you; he will never let the righteous be shaken." ~Psalm 55:22

A possible light at the end of the hospital stay?

Monday begins and rotations start. Dr. Onimoe has been replaced by Dr. Graham who is an older gentleman that has been in the business for 25+ years. He comes in, we talk and he brings up the port and asks how I feel about removing it. Of course I am completely against this and would prefer we waited until at least Thursday, then she would only need to be put under once and the chemo would be complete for this phase till the following week. If we don't wait she has to get the picc line in her arm to finish the chemo and deal with that, plus the fact that she can never be de-accessed, that they may never be able to draw blood from it since she is so little and an even greater risk for infection. We talk further and I have him convinced that we wait to take it out, if all other doctors involved agree. I already know surgery will agree, now I just need to get the ID (Infectious Disease) Dr. on board.  ID Dr. (can't remember his name) comes in with Dr. Graham around lunch. Dr. Graham tells him what we think and he agrees to let us wait till Thursday if and ONLY if we can de-access her today and re-culture the wound and see if oozes fluid again. It does ooze, but it is clear not cloudy nor does it look like pus. 1st step in the right direction. Blood cultures take at least 3 days to come back, but they check them daily to see if anything grows on them. We will know a little more on Tuesday, but at least for now we have 2 more days to further discuss. Monday evening she gets IVIG (Intravenous immunoglobulin). This is a blood product that is administered to maintain adequate antibody levels to prevent infections. Tuesday. Nothing new on the blood culture. Nothing is growing. Yet. Last week we were already showing white blood cells. This to me is a great thing. The doctors aren't quite as convinced since her counts are low and there still is a possibility of an infection even if there is no white blood cells present, fighting the bacteria. We are now discussing waiting to take the port out even longer since she is going off the steroids and this can inhibit things from healing. The surgeon and Dr. Graham are on board but the ID doctor is not and unfortunately this is his specialty and the other doctors will listen to what he wants regardless of how everyone else feels about it. But no decision has been made yet so my fingers are crossed. She gets blood today because her hemoglobin is low. They also prescribe lidocaine to put on her bottom to help with the pain and possibly get her walking. They are worried that if she continues to lie in bed she may develop pneumonia. This helps and she does get up and walk a little but after a short while she tires and we head back to bed. Wednesday. Still no growth on the culture (Praise God!). But this doesn't mean much yet, we still must get the ID doctor on board. I talk to all of them and they all know how I feel. I am by no means shy in voicing my opinion. Obviously if they say it must come out, I will not argue, but this is not quite the case, yet. 2 Doctors agree with me, so now we have 1 to go. He does his rounds, we chat and we discuss how we DO NOT agree and how he wants to take it out no matter what, regardless that it is not showing anything. But he agrees to talk with the other doctors and put his two sense in and get back to us. Later in the day I run into Dr. Graham who gives me a big hug and says "It seems we have softened him up"meaning the ID doctor. He is allowing for us not to take it out right now and have us continue on antibiotics. They also have approval for me to administer the antibiotics at home rather than stay here even longer since they want to keep her on antibiotics longer to make sure it is gone. Also her counts are up. ANC is up to 470 which is only 30 away from the 500 which they consider to mean no longer neutrapenic which would be at a severe risk for infection. Her white blood count is also rising. Normally they should have already seen a rise in counts, but for us they believe it has taken so long due to the multiple infections and also the antibiotics that can also effect the counts. Today she was given more Platelets as well as Albumin which is a protein that was a little low. Tomorrow she has a procedure at 9am to do her bone marrow as well as a lumbar puncture. The tests from this will tell us whether or not she is in remission and if we are able to move onto the next phase. We will also know more about the possible pocket infection and more on going home :)


"Rejoice in hope, be patient in tribulation, be constant in prayer." ~Romans 12:12

Contact info

We have created a facebook page for Bella and also an email for her that is linked to her paypal account.

Facebook - https://www.facebook.com/BellasLoveHealsAll

Email - bellaslovehealsall@gmail.com

Thank you everyone for the continued support and prayers!

Fundraiser #uno

Our first fundraiser organized by Texas Roadhouse Mesa begins on Saturday July 28th at 10am to 3pm. They will have a car wash, bake sale, petting zoo and possibly a few other things. We would love to see everyone their supporting Bella and her fight with leukemia.

"Give, and it will be given to you. They will pour into your lap a good measure, pressed down, shaken together, and running over. For by your standard of measure it will be measured to you in return."~Luke 6:38

We just have to wait and see

These are the words I have been hearing from all the doctors we have seen during this stay. We see the oncologist, this week was Dr.Onimoe. She is nice and very pregnant with twins. Then the infectious disease doctor, Dr.Ballen and our pediatric surgeon, Dr. Vegunta. They are all involved because of the Pseudomonas bacteria in her blood. Everyday they all come in and at different times of course ( though today I got smart and told them that we wanted to do it when all the doctors were present) and check the sores on her butt as well as her port because of the fluid that came out. She hates this. Her butt hurts a lot and she cries and poops and cries and poops. It's very stressful and doing it 3 times a day everyday is very exhausting. She also has a round like bruise with a pin prick center on her forearm that they are watching cause they think it could possibly be a ring worm. (Great) The bacteria she has is a serious bacteria that is resistant to many antibiotics. They have 1 smoking gun as they put it that they have placed her on a few days ago called Marapanim. This is an antibiotic that treats certain things especially the bacteria she has. We just have to wait and see if it takes care of it. They think the butt sores are also caused by this and the fact that they are draining is good thing. But one of their worries is that the bacteria has clung to the port, the foreign item in her body. Cultures on the oozing fluid from her port came back and the news isn't good. They believe it's a new bacteria that is growing in the pocket. Which is the place where they placed the port. Our only option now is to remove the port. Originally their thoughts were to wait and see what the blood cultures showed after she was on the antibiotics for 14 days. But now since there is a new bacteria we are out of options. The plan is to take the port out on Tuesday at 7:30am and then place a picc (peripherally inserted central catheter). It's similar to an iv but is surgically inserted. We must do this so that she can finish her chemo on Thursday and begin the new round next week. They will put in a new port eventually but again we just have to wait and see. Depending on what the culture shows when they take samples off of the port will decide how much longer we will be here at the hospital and how soon we can get a new port. If it is still growing a bacteria then we must continue on the antibiotics and this must be done at the hospital. We just have to wait and see. We did cut off the length of her. Unfortunately it was becoming unmanageable and was extremely matted from laying in bed all day. She looks adorable in her new bob and are preparing for when she is totally bald. Daddy also shaved his head today and we talk about cutting hers everyday to prepare her. She tells me that she will wear Gabbi's bows :)

"But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint."~ Isaiah 40:31

Hospital stay

I haven't updated because there really has been no change until 2 days ago. Bella has not been herself. She has been in a lot of pain. If its not her belly it's her butt. She has regressed back to diapers because it hurts so bad to go to the bathroom and sometimes she cant make it. It's very sad to see. Monday night we noticed what looked to be like a hemorrhoid on her anus. Tuesday morning we saw the doc. She wants surgery to come look. It could be an abscess and they may need to drain it. We see surgery later who believes no its not an abscess but may be Pseudomonas  This is the bacteria that was in her blood and the reason why we are here. They decide to change antibiotics. They put her on 3 different kinds as well as a pain med. Wednesday begins like normal. Doc comes to visit says there is no change. Today marks 7 days in the hospital. So what this means is they must change her dressing and de-access and re-access her port. She of course hates this. We go into the sterile room where she knows the "owies" happens. Surgery and the doctor are in the room when we remove the needle. She has a red legion that has been getting larger that they need to look at. The red legion looks fine, however when the took the needle out the wound was oozing. They sent a sample away for testing. They don't believe it's infected because it is not hot to the touch or red any where around it but the take a sample to be sure. After they remove the bandage and the needle, she gets to bathe without having all the bandages and stuff put on to stop it from getting wet. While doing this, she starts to go to the bathroom. I notice that there is blood in her stool. I immediately call the nurse. Yep definitely blood. Doctor comes in and takes a look at the bump on her anus. This doesn't appear to be bleeding and they need to make sure she doesn't also have an infection in her intestines. They re-access her port which was less stressful than taking it out, but still involves lots of crying. She gets to pick out a toy afterwards. We walk the halls for 2 hours not eating waiting for CT(cat scan) to come get her. Finally at 4:30 they come for her. They strap her down so she cant move and take the image. We come back upstairs where she eats and eats and eats some more. Images come back a little later and no infection (thank God). I am pretty sure I couldn't handle one more thing. She is still bleeding when she has a bowel movement and that's scary. They believe it is from the chemo which can cause mucositis. This causes sores throughout your digestive tract including your mouth and anus. It apparently is very painful. To help with the pain they also start giving her morphine when needed every 3 hours. Her hair has also started falling out. Nothing big yet. No clumps. But lots of loose strands that show on her pillow as well as when I brush it. I'm undecided on how to handle this. On one hand I don't want to cut it but it may come down to that when it starts coming out in clumps. She is officially getting used to the hospital. She doesn't wake up when they come in anymore and if she does she immediately goes back to sleep. The medicine is helping. This morning she decided to be funny and stick Cheerios up her nose. One got stuck and she had to blow it out but it was funny and felt good to laugh with her.

"We live by faith, not by sight." ~ 2 Corinthians 5:7

In for the long haul

We have reverted back to a newborn sleep cycle. She wakes ever hour or 2 needing to either pee or poop or she is in pain or hungry. Sometimes or most times it's all of the above. It also doesn't help that we got another transfusion of platelets at 11pm, then vitals at midnight and again at 4am. Today we got the blood culture back and it tested positive. What this means is a bacteria has entered her blood stream. This bacteria has lived in her forever, just like we have bacteria living in us. The only difference between us and her is she has no immune system. So pretty much her body is attacking her from the inside as well as from the outside. Doctors say its a minimum of 7 more days in the hospital but they usually will keep patients for 10 days. The main reason for this is due to the fact that she needs antibiotics every 8 hours by iv. Her fever is all but gone but she isn't feeling better. She is in constant pain due to a number of issues. Her pee pee hurts from the rash caused by the diarrhea and her tummy hurts from the gas and the diarrhea. But the good news is they took us off contact confinement because they no longer believe she has hand foot and mouth. So now we can leave the room without putting on those hideous gowns and gloves. Not that this much matters cuz she has not felt like getting up and doing much all day. Her hemoglobin also dropped to 7.4 so this afternoon we had another blood transfusion. Blood sugar is good. Came in at 112 but she still has glucose in her urine. The last read for that was 500 which is pretty high. Doctors are unsure what is causing this (I know cuz I asked all 3 of them individually). Normally when glucose spills over into the urine your blood sugar will also be above 200 but hers is not they will continue to watch and see. Hopefully tonight will bring some sleep, though I'm not counting my chickens if you know what I mean.

"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." ~Isaiah 41:10

Re-admitted

We are back at the hospital. Apparently the 3rd time is a charm. Went to the clinic all 3 days and today with a fever. When we arrived the fever was at 100.9. We got into the room and they reaccessed her port and took some blood. Her levels came back very low. Platelets were at 21 which is what they were the first time we arrived at the hospital and her ANC was 50. They also took a blood culture and did another urine test. Her 1st test from Tuesday came back with glucose in it. So now they need to see if they need to intervene and start giving her insulin because this is a side effect of 2 of the chemos. They can effect the way her pancreas works and make her a diabetic either temporarily or for life. They will run blood sugar levels and check for glucose every time she urinates. We will see what the results are hopefully by tomorrow. For now she is confined to her room because of the hand foot and mouth. When we the family leave we must put a gown and gloves and then take them off when we re-enter the room so that we don't give it to anyone else. But the doctor this week thinks we may not have hand foot and mouth. He will recheck tomorrow and hopefully give us the clear for at least leaving the room. Her temperature was still at 100.4 when the rechecked at 9:30. If the fever clears with the antibiotics we may get to go home on Friday but we can only take it one day at a time. Tomorrow we still will do another round of chemo. The vincristine. Did I mention my husband is out of town?? He is in Texas. Back on Saturday. I don't thinks it's really fair to drag him back here when there is nothing he can do for her here. Let's all pray for a quick recovery.

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." ~Matthew 6:34

Anxiety rears it's ugly head!

Anxiety has taken over my sleep! It began about 2 days ago when I just couldn't stop thinking about the what if's. This is something your mind just can't control. It's a natural path it goes down. You of course want to know what comes next and I don't think I have ever wanted to know what happens next more then this. It's so hard not to know. And this is what began the anxiety. Of course I decided to surf the web. Worse idea ever! The first blog I found was written by a father of a girl with A.L.L. She had it, thought it was cured. 5 years later she relapsed and did not make it. So technically she was in the 5 year survival rate of 80%. But still she didn't make it. I tried sleeping after that but couldn't. My brain just wouldn't shut off. What if this happened to Bella? So I continued to search. Next one I found the child also didn't make it. Thankfully 15 or more I found the kids were thought to be cured. Next day we had our first clinic visit. But don't let me fool you, I had already talked to the doctor every day since we went home. We are in a whole new ball game with this disease anything can put her back in the hospital. And the doctor kept reminding me of this. Don't hesitate to call. Call with any questions. So call is what I did. Monday's appointment went... Well it went. She cried through the entire appointment. But who can blame her. She has been through a lot these last few weeks. Her levels were good and ANC was going up. Slowly, but it was going up. Night time arrived again and I was already getting a hard knot in my stomach. I sent my sister a text in which she replied with a bible verse. "Finally, brothers and sisters, whatever is true, whatever is worthy of respect, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if something is excellent or praiseworthy, think about these things. ~Phil 4:8. In short, God is trying to do something in my life and he is speaking through my anxiety. I must use this time to think of all the good he is doing in my life at this moment. So this is what I did and I slept peacefully. Everyone always mentions how strong I am and how they don't think they could do the same in my position. Believe me when I say this, I would prefer to never be this strong but I have to. I must do this for my child. She needs me. I must be her rock. Just like my Father before me is mine. And I believe that anyone else in my position would be just a strong. It's just something that comes naturally to us as mothers. Because no one else can do what we do. Today we had to again go to the clinic. This was a sick visit. She cried through the whole visit again. They believe she has hand foot and mouth. There is not treatment except Tylenol. We hope she will get better with no ill effects from her treatment. We will go back on Thursday for another round of chemo. Thanks again to everyone for everything.

"Do not be overcome by evil, but overcome evil with good". ~Romans 12:21

Coming home

Coming home is a 2 edged sword. On one hand it's wonderful. We get to sleep in our own beds and begin this new chapter of our lives. But on the other hand you are going home to something so new. It's almost like when you are bringing home your brand new baby for the first time. But this time it's not a good homecoming. Driving home I had a empty pit in my stomach that I could not shake. I now was the primary care person. No more nurses no more doctors that come in everyday with the medicine already measured out. It is now my turn to do both jobs. My turn to decide when it's time to call the doctor if I believe something is worth calling. Leo went back to work today but luckily I have my mom to help me begin this process. Coming home started out good until we got out the medicines. Normally at the hospital I had no problem giving them to her. Of course tonight she decided she didn't want to take it and spit out her chemo everywhere. I had to make a hard decision here. Either give her another dose or think she got enough. Hard to decipher, but made the decision to do half a dose. The only bad thing about this, is they give you exactly enough medicine to finish this phase of the chemo. Putting her to bed was relatively easy. She woke up once to go potty but other than that slept fine. Unfortunately the day did not go quite as well. She was very irritable and in a lot of pain. Pain that I couldn't do anything about. Even with all the medicine I was giving her it just wasn't working. She seemed to be having a ton of gas and lots of diarrhea. And every time she had an accident she would get even more upset. One day out of the hospital and I've already called the doctor twice. But as he put it, this is a different ball game. You can't be the crazy mom who calls all the time when your kid has cancer. You can just never be too careful. For the next 4 weeks we will go to the clinic twice a week. Monday's to check her levels and give blood and platelets if needed. Thursday's to get another round of the vincristine chemo. Hopefully during this time we stay out of the hospital. Her immune system is compromised. She has none. Her ANC levels were at 24 when we left the hospital. Normal for a kid her age is 1500 to 6000. So needless to say she is at risk for every type of sickness that is out there. If we leave the house she must wear a mask. Hand washing is a must! Sometime within the next few days or possibly weeks, she will lose her hair. And I know this is no big deal, but I know this is what will be the hardest for me. It will all hit me that she is REALLY sick. Right now she seems pretty normal for the most part. Pray for us for these upcoming weeks and months and years. They are going to be tough. This disease she has is life threatening, but statistics are in our favor.

"Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight. ~Proverbs 3:5-6

Day 10 - Home bound

Tomorrow Thursday July 5th marks 10 days in the hospital. 10 days away from civilization, from everyday life and it's challenges. Yet somehow these 10 are some of the most important we will have in our lives. Days we will never forget even though every day we wish we could. That they never happened and never would. But this is not a dream. Our baby has cancer. Nothing we do or say can ever change it. So far the side effects have been minimal. The most noticeable is the steroid drug that she takes daily. It makes her eat like a pregnant women and have emotions like 10 of them. Just this morning she was up at 4am demanding one hot dog after another. She will receive another LP and bone marrow test tomorrow. The procedure is scheduled for 7:30am. During the procedure she will receive another round of chemo in her spinal fluid. When she comes out she will receive another dose of the vincristine through her iv. We should be able to go home sometime in the afternoon if all goes well. A few requirements are that we must have all of her prescriptions filled and ready for take home. She will still receive 2 doses daily of the steroid chemo called dexamethasone. Plus we must have lots of other medicines to counteract side effects plus numbing cream for her port. The list goes on and on. We must return Monday to the clinic to check her blood counts amongst other things. We will then be back Thursday to receive another dose of the vincristine. this will continue for 4 weeks. After that we do not know yet what our lives hold.

"I can do all this through him who gives me strength."~Philippians 4:13

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