Quick update to earlier post.

Just wanted to drop a quick note about Avarie's potassium level, it went up to 4.4 which is great. She was able to be taken off the heart monitors. She is still just as grumpy as ever, but at least that seems to be under control. One last note, GO STEELERS!

Avarie needs to eat a lot of Bananas!

When we got to the hospital Thursday they did Avarie's labs and everything came back looking good except for her Potassium Levels. They came back at critical levels. We were admitted over to the hospital with in about 10 minutes. We were going to be admitted anyway, but usually it takes a couple of hours to go from the clinic to admission. At least that is how it has always gone in the past, but because they needed to give her a potassium infusion immediately and they can't do that in the clinic we were taken over and started right away. She was also very dehydrated but they did not want to rehydrate her until they got her potassium up because if you add more fluids into her it can just lower her levels more. A normal potassium rate is 3.5 and Avarie was coming back at 2.1. She was given a potassium infusion and then her levels were taken again, but it only bumped her up to 2.7 so she was given a second potassium infusion. They take about 3 hours to administer. After the second potassium infusion her levels only went up to 3, but the Dr wanted to get her chemo started and just monitor her potassium levels. 3 is no longer a critical level, it is still really low, but not critical. In the morning when they checked it again her levels had dropped back down to 2.1 so they they started administering oral potassium. I haven't talked to Craig yet this morning to see if that helped bring her numbers up or not yet. They had to switch to oral potassium because her chemo was going and they can't stop the chemo once it is going. The chemo takes 24 hours to administer, so it should have stopped this morning, but I haven't been able to find out whats going on today. The reason potassium is such a big deal is that it is directly related to your heart. Too much or too little can damage your heart, although they did tell me that too much is much more dangerous then too little. Avarie is not handling this stay very well, I think partly because she was just feeling so sick when we went there, she just started keeping things down yesterday afternoon because they can give her antinausea meds through her iv rather than her stomach. Everytime I tried to give her antinausea meds through her stomach she would throw it up with in a few minutes, she couldn't tolerate anything on her stomach. She just keeps wanting to go home and she wants to know how long until she can go home. I have learned my lesson on that one. I never promise her a time that she is going home, because we just never know when we are going to go home. I am pretty sure it will be a couple of weeks this time. We have another round of chemo this next Thursday and that is a 5 day chemo stay. So I doubt we will make it home from this chemo before Thursday, but it is possible we could at least come home for one day on Wednesday and then just go back the next morning, but I am not holding my breath on that.
I found out that some of the nurses at the hospital are following Avarie's blog. I am so excited and yet nervous about that. It makes me scared I am going to not explain some of the medical stuff accurately, but I guess if I don't they can correct me when I see them. The nurses got on and printed off the pictures of the other nurses in the tutu's and pasted somewhere in the hospital. I have heard about it, but I haven't seen it yet. So sorry Chris for the embarrassing pictures of you in the Tutu, but you sure where a good sport about it. Also there was a little drama that went on with one of the nurses that we love and I just wanted to take a minute to tell everyone how much we love Trisha. She is one of our favorite nurses there and we adore her. When we are going back there is a small handful of nurses that Avarie asks for and Trisha is definitely one of the first.
I'll hopefully post later about any results of the potassium stuff.

Tummy Problems = Sleep Problems

Today has been one of the hardest days we have had so far. Last night Avarie woke up sick to her stomach. She was throwing up all night. I think we maybe got 1 hour of sleep over the whole night. I was up more then Craig with her, so he let me sleep a couple of hours this morning and got the other kids off to school, then we switched and he slept a couple of hours because he had to work tonight. I was still so exhausted I called to see if my mom could take the baby, but she had a couple of things going on today and then the next thing I knew my sister was at my door snatching the baby. My mom had called her, I was incredibly grateful. I knew she had things going on today and I probably would not have asked or would have told her no I am ok if she called to ask to take him. She knew me too well for that so she just showed up for him. She kept him until naptime and I was able to get a small nap in. I also had someone from church show up to help clean today. She let me sleep on the couch while she scrubbed my kitchen and bathroom and then quietly slipped out. I am very grateful for all that wonderful help.
The afternoon then went ok, but evening has been another story. Avarie has not felt well all day and then has started throwing up again this evening. I try to give her anti-nausea meds, but she just throws them up. Now its coming out both ends, that makes for a lot of fun. The kids were needing help with their homework and I was trying to help with that and stop and help Avarie. Then when I would be helping with the kids Sawyer now finds it funny to go and pull the blankets off of Avarie or throw toys at her or take things from her. He is only 18 months old and is just going through a very naughty stage. I know it is partly because he is not getting a lot of attention so he is finding things to keep himself busy, unfortunately he thinks bugging Avarie is fun.
Now that I'm writing it all down it doesn't seem so bad, but it was really stressful when it was happening. I'm just glad that I now have everyone in bed. I am just hoping that Avarie will not have a night like last night I don't know if I can survive another one. We are already so tired from the medicine that we have to administer from midnight to 1am and then clean and unhook the line and then administer from 6-7am. Along with nightly diaper changes. This has definitely been the most tiring time home for us. We don't normally have meds that need to be given during the night, especially not ones that take over an hour to administer.
I feel bad but I am actually looking forward to going back to the hospital tomorrow. Then the nurses will take over all the med care and I can just sleep through it. I've gotten use to sleeping at the hospital. And Craig will switch me out Friday night, so I only have to spend one night there and then I will go back Sunday night after superbowl. My mom is going to go up to the hospital on sunday and spend the day with Avarie so that Craig can come home and we can watch Superbowl together. Craig is a huge football fan and the Superbowl is always a big day in our house. But this year his team has made it to the Superbowl and so it is a huge day for us. Go STEELERS! Football is something that we usually enjoy together. Yes I love football too. I haven't watched any this year, but I am looking forward to the Superbowl. Hope its a good one.

OHSU Transplant Consult

So we had our consult today with the transplant Dr at OHSU. It was not quite what I had expected. I had expected the Dr to go over all the risks to doing a transplant and the benefits and then answer questions we might have. I pretty much just expected it to be that. We did do some of that, but really not quite as much as I had expected. It was more her wanting to meet Avarie and get her medical history from us. She likes to meet with possible candidates for transplant and evaluate them and then spend hours pouring over her medical file. I guess she doesn't want to waste those hours from what she can get a good feel from in 30 minutes of meeting with us.
Craig and I both came away feeling like transplant is Avarie's best option. I don't like it, but the statistics that she gave us today were a lot scarier then the numbers we had been working with. According to her Avarie's chance of not relapsing is not 70% like our Dr's had told us, she said that it actually only 40% and that with a transplant that number could jump to 60-70%. I was already operating at the 70% mark, so to go below 50/50 chance of relapsing. That one hit kind of hard. Its kind of like your mind gets stuck on that one fact and you can see the Dr talking to you and your trying to listen, but you aren't hearing anything that is coming out of her mouth. That's how it felt today, at least for part of it. I was able to snap out of it, and listen, but I know I missed a few things.
I plan on talking to our Dr's tomorrow about this number discrepancy. Its not like it is a small difference. That is a huge number difference. We are also planning on asking for a second opinion from Seattle Children's Hospital. They are the hospital that perfected the transplant and we would like another opinion on this. Its a huge decision and I don't like either option. If we choose to not do the transplant right now and wait and see if she relapses then we could be facing something scarier. Because whatever cancer survived to retake over and cause a relapse would be cancer that already survived all of the drugs she is on and the drugs she is on are the strongest available. If that happens it would be a lot more difficult to get her into remission and then her numbers would go down to something like less than a 20% chance of not relapsing and with a transplant only a 40% chance. Those aren't pleasant odds.
They have already run Avarie's bone marrow type through the registry and have come up with 90 possible donors. The Dr is very happy with that, she said that she can then be very picky about the donor to help give Avarie the best chance. The Dr said that she could have everything ready for transplant in as little as 6 weeks, but because of Avarie's fragile state with her legs and infections, Avarie would not be ready for transplant by then. It would be too risky for her. She wants her to go to transplant before Avarie would go into the maintenance stage of chemo, which is on June 7Th. She worries that Avarie would relapse if she goes into maintenance and we would be facing a much bigger challenge and much worse relapse odds for the future.
Craig and I both feel good about the appointment today, well as good as you can feel, but there are still a lot of questions and uncertainties. Hopefully when we go meet with our Dr tomorrow we will be able to settle a lot of those questions and nerves. Well no, there is no chance of the nerves being settled, but perhaps we could feel a little more confident about making a decision.
There was a lot more info, but that is most of the important stuff. Oh one last thing, we have had several people offer cord blood from their soon to be born babies. We are so grateful for the gesture, but according to the Dr today Avarie would not be a great candidate for a cord blood transfusion because with an adult donor if Avarie were to have any complications or need a second transplant we could go back to the same person and use the same marrow, its not good to keep introducing new marrow, but with a cord blood transfusion its a one shot deal. There is no one to go back to use as a donor again because they are now growing babies somewhere, too small to donate and we got the stem cells from their umbilical cord once its used there is no more umbilical cord to take from. So thank you all for that wonderful offer, but it is unfortunately not an option for us.
If anyone has questions about all of this, please feel free to ask. We are so open(obviously) about all of this. Your questions may help me to think of things that I haven't thought to ask yet too.

Always Eventful

Today started out great. Avarie has been having a great day playing with her sister and brothers. She has been happy and even eating a little. It is so great to see her with such a pure joy smile on her face. She loves being home with her siblings.
Around 11 am though we had another nose bleed. It wasn't bleeding crazy like Tuesdays nose bleed was, but it wouldn't stop. It went on for over 40 minutes so we had to call the Dr. She wanted Avarie to go in for a platelet transfusion. We decided to take her to Legacy Salmon Creek because it is closer to us. In hindsight that was not the smartest decision. They are very nice there, but they do not handle oncology kids very often and so there were a lot of things that we just take for granted at Emanuel that were a little more difficult there. Like the fact that Emanuel is located down the street from the Red Cross. Salmon Creek is not and so we had to wait over an hour for her platelets to arrive. Also our nurse was not a pediatric nurse and so she kept thinking that something was wrong with Avarie's port because everytime she touched it Avarie would scream. She was convinced there must be an infection or something. I kept trying to explain to her that Avarie is just very traumatized and will cry no matter what she does to her. She is ok if you are just giving her a med, but the nurse couldn't get the platelets to drip in the beginning and so she was trying to move Avarie's port around. Avarie was not happy about it and cried hysterically screaming "OWWW". So she made the Dr and the IV nurse and someone else come in and evaluate it. Once I explained to them that Avarie has Post Traumatic Stress from everything she has been through and they saw how she cried when they even touched her blanket saying that that hurt they stopped worrying. We did still have the problem of the platelets dripping in slower then normal, but I was not about to let them de-access her port and then re-access it. That would mean her having to get poked again and that is so traumatic for her everytime they have to do it. There is also the problem of them actually getting it accessed again. The last time we had emergency room nurses try to do it, rather than our oncology nurses they poked her 5 times and weren't able to access it any of the times and then our oncology nurse the next morning did it once and got it on the first try. They are just more experienced at it. I hope that doesn't sound like anything bad against ER nurses, because they are truly wonderful. I just don't want to put Avarie through any more then she has to. So I told them no I was not a fan of the idea of de-accessing her. We had good return on the line and we were able to push in meds, it just had a lot of resistence and so the platelets weren't flowing as smoothly as they should. But the platelets eventually all got in and we were home by 5:30 or 6. I can't remember exactly. Our wonderful neighbors came and sat with the other kids. We thought we would only be gone for maybe 2 hours, turned more into 4.5-5 hours. The Boes' even made dinner for our kids and had them all sitting down and eating when we got back and they picked up our house a little and did some laundry. They are such amazing people, I had to make sure I shared a picture of them so that everyone can see who they are. There are so many people that we never could have made it through all of this with out their help and the Boes' are definitely at the top of that list.

We are home and all the kids are in bed now and so we hope for a good day tomorrow. Tomorrow we meet with the transplant Dr's at OHSU for a consult. I'll let you all know how it goes and what we find out.

HORRAY!!!!!

Avarie is still having soars but since her fevers have stopped they are going to let her come home today. They know she will heal better at home then there, so we are just waiting for discharge. Craig has our little "egg" car there. We call it the Egg Car because it looks like a big hard boiled egg. The kids thought that was funny and the name has just stuck. So he will be bringing her home today.
We are all so happy to have her home. It means a lot of extra work, but I hate being separated from her or my other kids. I'll do any amount of work just to be able to have my whole family under one roof.
She has to go back on Thursday for her next round of chemo, but at least we have until then.

More Hospital TuTu's and More Hospital Nights

The last blog wouldn't let me post all our pics so here are some more. These are the pictures of our case manager Chris. The other pictures our some of our nurses. The guy is Joshua, he is one of our favorite nurses because he makes us laugh all the time. He is a great nurse. Then there is Meme, she is so sweet, we really like her also and then also there is Trisha, she is one of Avarie's favorites. Trisha always calls Avarie "Bug". Avarie likes that and Trisha does cheerleading for Avarie so putting a tutu on was no big deal for her. Avarie definitely enjoyed all of it.