TPN is started

My girl woke up on Tuesday morning and I think she felt a little better. She started eating a few things. This was all before they even brought her TPN (IV nutrition) out to us. It figures. The nutrition is on its way and right before that she decides to eat. I say that lightly because I truly do not think she is deciding at all. She is not purposefully not eating or anything like that. She was just getting in pain every single time that she did. I was just very happy that she decided to eat. Our home health care nurse came out with the big bag of proteins/fats/vitamins, etc and started to teach me how to assemble it all. It is a huge long process...took about an hour both days so far. There are all different things you have to mix up and then put in the bag and you have to be very careful. You have to be careful about not letting any air bubbles gets in, and measuring the right amounts of everything, and making sure your needles/ends don't touch anything because they are sterile. I also had to learn how to work the pump, install the tubing onto the pump....yada yada. It is a complete pain and hard to do and I am still not ready to do it on my own yet. Lucky for me, they give me three or four days of instructions. I am just so scared that I will forget something and then it goes straight into her port and then straight into her heart. STRESS. This is what it looks like peeking out of her backpack. yuck
The good news is that Ally doesn't get any of the stress of it (she has enough of her own)...so while we were inside doing all this scientific stuff.....this is what she was doing....
Seriously, I about died when she said she wanted to ride her bike. I went flying thru the garage to find an air pump to pump the tires that hadn't been used in 10 months. Helmet, check. Gave her a little push, got her going....my neighbor screaming over to me to get the camera....ran in to get that, tripped over the threshold to the back deck, leaned over the railing and YES! got the shot. I just noticed that sweet little girl even gave me a wave in the picture! It was such a big deal to me because she literally hasn't gotten on her bike since before she was diagnosed. Not once, not even a little try....and here she is.

She woke up again today with a bellyache. We were really trying for school. It just wasn't happening. At some point we have to get back into the routine. I think that is one of the hardest things about all of this...no routine. We did get into a small routine a few weeks back only to have it RIPPED out from under us for the 100th time. And for me, always a planner...always like to know what is going on....always like to have the freedom to leave my house...well it just isn't there anymore. I crave it and need it, but no. I have to deal with it and it is hard with two other kids, but lately the sunshine has made it seem more bearable. And Ally's lovely tutor, Mrs Brower, she just works around us all the time. So if there is no school, and Ally isn't in too much pain, we call her and they usually get an hour and half lesson in. I have tried so hard to keep Ally up on her lessons and make sure that she can stay in the grade that she is in, etc.

Really nothing matters much to me anymore when I think about our friend Davey....Jerad drove up to Greenville yesterday to go to his funeral on behalf of all us (me too scared to take Ally that far away) They had a beautiful almost 2 hour service to celebrate the life of their wonderful boy. He really was someone you can never forget.....these kids are all so full of life when they feel well. Even at the young age, they appreciate the good days and take full advantage! That is how Davey was. Never wallowing in misery or self pity....but having wheelchair races in the hall or playing the 10th game of UNO.

Thursday at 8am...we are back to CMC. Another spinal tap. More chemo. Monthly antibiotic infusion. Monthly IVIG infusion and generally a very long day. They will UP her dose of methotrexate yet again. I am hard pressed to even let them do it after seeing Ally have a bad 9 out of 10 days since the last dose. The increase has me scared, but I guess the leukemia has me more scared. So I have to let them do it....but who knows what kind of war it is going to wage on her little stomach. No leg shots this time, and I am hoping this makes the difference.

Thanks for all the support and suggestions that we have gotten on how to deal with the side effects. We appreciate the support and prayers more than you will ever know. Fingers crossed for a better 10 days.

Belly pain continuing

Well we have had quite the worrisome day. Well, me worrying anyway. Ally's belly pain is just not going away. Jerad got her all the way to school because she really wanted to go (and her ANC is 2350!)....she got there and was doubled over in pain so he brought her right back. She was still resisting all food. Quite frankly, because even if she eats a morsel of food it ends up being diarrhea. (sorry if that is too much information...but it is what it is). I knew her nutritionist (whom we love, Miss Shannon) was not happy with her weight loss too, so we went into the hospital today.

They did lots of tests...her normal bloodwork was good. She showed some malnourishment in her protein levels and potassium levels, but not dehydrated. They did an abdominal scan of her belly. They found nothing at all in her bowel. Literally nothing. Normally there would be some stray amounts of food...some air....but on her nothing. I remember with my Mom they were always worried about her digestive system shutting down when she wouldn't eat. I was glad that they didn't find any masses or any constipation (which I figured). We really didn't get much of an answer for the pain.

I was told AGAIN that I need to get her to eat, but I try!! I try so hard. I try like every 15 minutes all day. It is exhausting and stressful and I am always trying to whip something up or grab something for her. Of course, as soon as we get to the hospital, she decides she wants to order some food from the cafeteria. She ate half a taco (some protein) and a baked potato (loaded with potassium) with cheese. I about fell over. The most she has eaten in a long time and she also made a big fat liar out of me. Just kidding....I think they know me better than that.

They also decided to put her on an IV nutrition. Basically, she will get hooked up to IV nutrition support every night for 14 hours...530pm to 730 am. This doesn't go through the stomach, but they are hoping that some calories/protein will give her some energy and possibly stimulate her to eat again. And she will take the appetite stimulant drug to help her do that. We can do this through home healthcare and they are coming tomorrow afternoon to teach me how to do it, mix it up, etc. Another badge for my nurse's training. They are going to try it for a week and see how she does. I guess if they want it to go thru her stomach they have to insert a tube in her nose and feed her that way....preferable for the situation because it involves the digestive system, but I would rather not have to do that to her. Hopefully we don't have to go that route.

I just have the feeling that something is wrong and I hope some light is shed on our situation soon. It is too long to keep going in this pain and she has to get another (and higher dose) of the methotrexate on Thursday. I am scared it will send her over the edge. So much for me "liking" this phase. I take it back. I guess there is just no good phase until we are done with this rotten schedule and get back to our routine life.

I hope things turnaround soon. I want my Ally girl back. Please continue to pray for Maggie who has just finished her 9th day in ICU and does not seem to be making much improvement. And Amanda who just clocked day 8 in the inpatient unit with an infection in her port. Also for Davey's family who are putting their dear son to rest tomorrow morning. Our thoughts are with them.

As always, thanks to our loyal Ally's Army for the support and prayers.

WSU Wins

Jerad and I had a really nice day Saturday...we had the whole day to kick back and relax and do all the things we used to like to do before we had kids. Slept in, worked out (at the same time!), grabbed coffee, shopping, lunch, more shopping, had a drink with a friend, basketball!, out to dinner at the cutest little restaurant, and then stayed up waaaayyy too late with our friends celebrating the big WSU win!!! (next game is on ESPN on Tuesday night...one more win and we go dancing...) We have not had this opportunity since before Ally was diagnosed last May...and it was really a nice break. It is funny how much more we appreciate things now. Especially getting to sleep a whole night through.

Thank you so much, Grandma and Grandpa, for allowing us this opportunity and taking wonderful care of our children in our absence. The kids were so excited to have Gma and Gpa all to themselves. Ally even remarked that this time, she would get to see them because she wasn't in the hospital. (usually when they come they just take care of Evan and Carly) Our three children, all of them, were practically pushing us out the door to leave. Hah. Ok then! It made it that much better for us to do so!

Ally is doing okay although I have now been with her almost an entire day and haven't seen her eat yet. I am really really starting to worry about this. How on earth can people survive for so long without food?? Just little bits today. Still having stomach pain and issues. She has to get more treatment in just a couple days so I am really feeling the pressure of getting as much food in her as I can. UGH....it is so hard. I was exceptionally happy today when I saw her riding down the sidewalk (a little slowly, but still) on her scooter!!! Remember when I was wishing wishing for this???

The warm weather has cheered us up and soon the time will change too. We are ready for some change and after all, we have one more season to go (Spring!) before Ally heads into maintenance. Please pray she makes it through with ease.

Friday update

Ally has now eaten some small bits. Tomato soup...a quarter of a grilled cheese sandwich....some crackers...a few bites of sherbet. All has stayed down. She is a bit perkier and complaining a little less. We opted to not take her back to the hospital. As parents, it is so hard to know when to draw the line and take her in. We put up with a lot more than we used to, that is for sure. I guess we have lived and learned. We usually just deal with it and have become pretty knowledgeable in the healthcare department. This chemo was hard. Four solid days of belly pain and blah! Maybe a couple more. Next Thursday they increase her dose yet again. That might just knock her out.

I am glad, however, that we have seen some improvement. The worry factor was getting a little too high for me, but now it is looking a little brighter.

Have a nice weekend. Good luck to the Raiders in their tournament game tomorrow! Barring any unforeseen circumstance, Jerad and I will be there to root them on.

Good news, bad news

First: The good news. Evan's heart is absolutely fine. Woo hoo. We are so happy. Sweet Dr Ross came in to see him (we love love love his wife Nurse Sharon in the hem/onc clinic). It took a lot of listening to even hear anything. They gave him an EKG. The determination was that it is an "innocent" heart murmur..it may have been amplified a few weeks ago when he was sick. They don't even want to see him back for two years. The Dr. was soo soo kind to Evan. Everyone at Children's really seems to love children (as they should), but we very impressed with how much time he took with our son. Evan was sooooo nervous too, I could tell. But he did great and we went and got a Shamrock Shake from McD's to celebrate. Thank you God for protecting our other children as we wage this battle with Ally.

Now: The bad news. Ally is still suffering a lot. It is breaking me up to see her. She will not eat. I try to encourage her, but then she eats some small thing and just throws it back up. Tonight we tried two pepto bismol...threw those up too. She has not eaten in so long that it seems her body is rejecting everything. She doesn't want to eat, but we try to insist. She has held some plain white rice down this evening. She is also having diarrhea a lot. Jerad and I are scared she is getting dehydrated, but she did drink a fair amount today. I can definitely tell that they raised her methotrexate level. I hope she recovers soon, but we are considering taking her into the clinic tomorrow. We will see how the night goes. It just pains me to have her breaking into tears lots of times during the day because her stomach is in so much pain. She has lost 13 pounds in about 4-5 weeks. A LOT.

Thank you to my Grandma Ruth who sat right by her side today for over three hours while I took Evan to his appointment. What a lifesaver she is.

The kicker to the story is that Ally has been doing so good. Jerad and I finally decided that we would go away for the night (to Indy) and see WSU play their tournament game. Jerad's parents are coming to stay with the kids. We have never both left her, but we were gonna try it. We still may try it, I don't know. Jerad's parents are relentless that they are coming and want us to have a break. Not sure what we will do with a whole nights sleep. I can see the tiredness on Jerad when he actually fell asleep today during Evan's appointment right when the doctor was listening to Evan's heartbeat. I was on the edge of my seat frantic with worry and Jerad was asleep. If you saw how much he is up at night, you would know why.

Thank you for saying extra prayers for us and for Maggie and Lincoln (who was in the Dayton Daily News today!). We are so grateful to all of our followers and we still love to read your comments/suggestions.

With sadness I write...

It doesn't even seem appropriate that I am writing tonight. But I don't know what else to do and somehow things must keep going. We are having a really bad week, but it pales in comparison to the Lewis family. Ally's best little friend from the hospital, Davey, died suddenly last night in the middle of the night. He was her age and her friend and when she was in the hospital they spent a lot of time together. They played games a lot and carved their pumpkins together this year. At Christmastime, when she was given the opportunity to make a build-a-bear, she didn't make one for herself. She made one for Davey. They were both there together on Christmas Day. When we go to the clinic, we stop in to see Davey. He had AML and was in the hospital a lot...he was just finishing up his last chemo. He was almost done...just a few weeks left of inpatient after being diagnosed a couple months after Ally. His treatment was much shorter, but also harder. He got an infection that just took over his body. Last evening he was up on 4, quickly went to the PICU, and then passed very quickly. I got the news this morning, and it is extremely hard to bear. Again, I haven't even told Ally yet. I have to build up my strength, figure it out, and see if she can talk to some mental health people. Please don't ask her about it or mention it.

I tell you all of this about Davey because he was such a special boy. If there was a popularity contest in the hospital, this kid would have won it. He knew everybody...even the security guards downstairs. He was always goofing off in the hallway in a wheelchair..always coming into our room to just hang out. Jerad loved him, often playing games with him when Ally was too sick to play. We all loved him. And now, in the blink of an eye, he is gone. We will NEVER forget him. Tonight I am praying for his mother and father and brother and sister. How they go on I will never know.

Three other hem/onc patients were also in ICU last night. Maggie, Lincoln, and Carly are still fighting. I have really never even heard of more than 1 oncology patient being in there at a time. Now 4 were there just last night. It is breaking everyone at the hospital. It hurts.

And Ally. Well she is having a rough time. She cannot and will not eat. She ate a little ice cream tonight, after we begged her, and promptly threw it back up onto my Dad's driveway. (sorry) Her belly is hurting. She has yet to get to school. But she is home and we can bear it. Tomorrow we go for Evan's cardiologist visit. I will update when I know more, but I am honestly thinking it will be very minor. Really how much is too much to bear?!? We can't be given anything else right now. We just can't.

Dose 3, done.

Ally did make her counts today. ANC was 1350, so still going strong. But not for long. They increased her dose of methotrexate yet again with a warning that mouth sores could be around the corner. It was also determined that she is getting too thin again, she was down 3 more pounds in a week. So todays doc, Dr French, (Dr Broccoli is skiing in Colorado!) decided we should start the appetite stimulant again. His thoughts were that she needs some food in her body in order to keep up with the chemo, etc. I agreed.

I talked to my nurse friend Robbie today about all the bad stuff going on. She informed me that it is especially bad right now...a real downturn for our area. It is hard on all of us, but is really hard on the medical team trying to keep plugging through every day. Sometimes I don't know how they keep their chins up and their smiles on. But they do. And they are saints. She also said that usually after a downturn there is a period where really good things happen...an upturn. I am anxiously waiting for that.

Ally was doing okay with her chemo. That is until about 6:30 pm when lots of vomiting started. She did keep her bedtime snack of crackers down (so far.) I am anticipating a not-so-restful night with the joint pain and/or nausea. We are due back in the clinic at 930 am for the leg shots. I really can't wait until leg shots are a thing of my past. I have finally learned that it is best if I take my own wheelchair in....and I can get her out to the parking garage with ease.

Maggie is holding her own. Not out of the woods yet, but not worsening either. Thanks for asking about her.