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