Spoke too soon!

I am now very leery about announcing good news. Amanda was doing so much better until I posted something about it. She came down with a fever early yesterday morning. We followed the clinic's protocol and called it in. We were told to go down. I frantically packed the bags while listening to her cry hysterically. I was convinced she would be hospitalized. Fortunately, she is home because her counts are so high (her ANC - immune system - doubled again!). It is definitely a blessing for her. But, unfortunately, she is not doing so well. She has picked up a viral bug of some kind. The clinic is treating everybody like it's the flu. They said the hospital is full to capacity with flu, and several cancer patients are contracting it. We should have the test results on Monday. I think it's a stomach bug that Scott and I had last week. Unfortunately, he just thought it was something he ate and I have hyperemsis; I'm always nauseated. We've learned our lesson to always wear a mask, even if it's indigestion. It's so frustrating. We've been so cautious with her. The fever didn't last long, but she's thrown up and has been very nauseated to the point of not getting much down her. The worst part is a very severe headache. She is in a lot of pain. The more pain she's in, the more nauseated she is, and the less medicine we can get down her to help. It's a bad cycle. And the fact that she just had a lumbar puncture doesn't help. If she doesn't drink enough after the procedure, it triggers terrible headaches that are hard to get control of. I'm currently waiting for home health to show up to access her port so I can start her on IV hydration. I called the on-call doctor and said I already have all the hydration supplies and plan to use them on her unless they told me no. The doctor was a bit surprised, but didn't argue with me. I'm hoping it will help. If not, it's back to the clinic and a potential CAT scan. I think she's back to square one with fear and anxiety, so pray she can pull through this without needing a hospital stay and a good psychologist.

REALLY???

I about fell off my chair at yesterday's clinic. There was nothing out of the normal routine - Amanda lamenting about being hungry, scared when they have to access her port, eager to get home, etc. But, her blood counts were totally unexpected. Her immune system (ANC count) tripled and her platelets doubled in one week. But at the same time, her red blood count went down, as I had suspected, but not quite low enough for a transfusion yet. I just don't understand how that is possible. I had to reread it several times. To have her counts go that high so quickly, but selectively choose to have some drop. How does her body do that?

At least for this week a paperclip won't cause her to bleed out and her immune system is temporarily within a normal range. Perhaps we can enjoy an outing for Dad's birthday and the 4th of July without our Lysol bubble force field at full force. I still plan to clorox down anything and everything until 2012. It's too much of a habit now. And the anemia really does slow her down and make her not feel well. But if I could choose which count to have problems with, I'd choose the red blood cells. For an active social kid, it's the least life threatening of the three.

GOOD DAYS AND NOT SO MUCH

I won't sugar coat it. Amanda is just having moments where I know she is downright depressed. I don't know if it's the new medication, trying too hard to do too much, adjusting to all the changes and stress....or likely all of the above. She is so smart and understands so much, but I think she can't cope with it all emotionally. Yesterday, she wasn't herself and noticed all the hard changes in her life. I couldn't argue with her and it's hard as a mom to support her when I'm having all the same feelings. Fortunately, they seem to be passing moments for her. I guess I would be worried if she didn't have them. None of this is normal for us, but we're slowly adjusting.

She is on her new medication. Overall, she is acting more like herself and has regained a lot of strength. I can tell by how much she runs around the house teasing her sister. (I had to actually discipline her because she tried to turn Erin into an art easel). But last night the nausea spells started. I think her counts are dropping too because she's pale enough to be mistaken as an albino. We'll ask for some anti-nausea medication at clinic tomorrow and hopefully a blood transfusion will be in her near future. None of it is pleasant, but manageable.

I have finally figured out that all of her really good days and moments involve having Dad around. She has become so attached to him. He offers her something I can't and I love him for it. Here she is, thrilled to get out of the house and spend time together as a family on a picnic.


But, in our attempt to have our primary lesson outside, we were sent rain. God didn't seem to approve of the venue.
The headbands from aunt Leisha are a big hit! The girls are really getting into the head coverings.

What a Sweet Sister

Amanda's cancer has brought out the two year old in her, and the twenty year old in her. I've had several medical appointments lately and she's been more keenly aware that our unborn baby is having some struggles. Today she said that she wants me to tell everybody about him on her blog. She wants me to ask people to say a prayer for him since that will help him get healthy and strong. She is capable of being so sweet and wise beyond her years sometimes!

Although this blog is for her, we know many people are concerned about our family as a whole. So, per her request I will let you know that our little guy is proving to be pretty tough. We were advised (the day after Amanda was diagnosed) to terminate our pregnancy because it was less than 25% birth survival, and a pretty grim outlook beyond that. He had virtually no amniotic fluid and a very enlarged heart, plus a few other technical health problems that I don't think I can even spell. Long story short, he has made an amazing comeback that our doctors have no explanation for. The doctor just tells us that he is glad to be wrong and that this is not the norm. The major health conditions that were present have almost completely resolved with the exception of him being very small. We are being told to plan on a 4 pounder at most, but that he can very likely make it to 37 weeks (in August). We have no explanation as to what has caused the problems. It really doesn't matter anyway. It has always been up to God what happens. But I do not believe it coincidence that his health begin to improve when we started asking people to help pray for him instead of keeping it quiet. So, I think Amanda is very wise for her young age and I appreciate her ability to have faith in something she doesn't understand.

SHEARED

As you can see, Amanda is wearing a lot less hair. She does not like the word "bald" and was reluctant to let me cut it. But the misplaced mullet, comb-over, thinned out look was just not becoming to her pretty face. So we discussed all the various animals that shed, molt, etc....and eventually grow it all back. She decided that she liked the idea of a lamb being sheared and she even baaaaed as I was cutting her hair. So, she is NOT bald, she is SHEARED and relates herself to a little lamb right now. She didn't even bother to look in the mirror when I was done. It's usually just the anticipated change that bothers her most. She seems very content with her new look.

Today started round 2 of 5 out of our treatment phases. This one will last a month. She had a very good clinic day. I love that the staff listen so intently to how she is doing. I don't always know what to expect from her treatment or know what to bring to the doctors attention. I started complaining that I dread lumbar puncture days because she does so poorly afterwards with headaches, fatigue, and mood changes for a few days. I also told them she has a small brain cyst; I think that took the guess work out of trying something more cautious. I thought they already knew about it - oops. They recommended we use a different needle and be highly cautious of the ratio of fluid taken out and medicine put in. The new needle was used today and made a HUGE difference. She came home and played the WII. She usually curls up in a ball on the ride home and needs a few doses of pain medicine. I'm sooooo glad I mentioned it.

This month starts a daily dose of oral chemo which we'll start tonight and cross our fingers she does well. She has really started to bounce back lately. She's laughing more, acting more like herself, and even tolerating Erin to the point of teasing. She's also much stronger. Her butt muscle exercises are doing the trick.

Our only setback is that her hip x-ray showed some density depletion and spots where her bone marrow has stopped working. This is due to the steroids. We anticipate that they will go away now that she is off the heavy steroids. But, if it doesn't, we'll have to look at altering her treatment plan as these are not good permanent side effects.

Many Thank You's

We are very behind on the many thank you's we need to offer to people. We cannot possibly thank everybody in person; there are too many. From gifts, to kind words, to donations, to prayers, it has been very uplifting for us to know how many people are in support of our family. It is a very tough time in our lives right now. I am still on IV's and find some days very difficult to care for myself, let alone my children and their individual health problems. We are in the midst of a very high risk pregnancy with a severely growth restricted baby. We will likely be facing an extensive NICU stay sometime this summer and are praying that our baby comes when both he and Amanda are strong. Erin is, well, Erin. As my brother-in-law says, "everything about that kid is special." Her unique allergies and behavior oddities live up to that statement. And, then there is Amanda and cancer. We often hear comments that it is like Job at our house. I do not agree because we are surrounded by friends, family, and total strangers that are supporting us in amazing ways. I think to not have that would be far harder than what we are facing. The only way I can think of thanking everyone is to post more pictures so you can see for yourself how we are doing. It seems to be about all that we can offer during our period of isolation. And it gives us a way to show that despite hard times, we really are hanging in there.


Here's a get well surprise left by Amanda's SEM class. It made her smile after a tough treatment day. Her regular class made her a wonderful card that rolls out the length of the driveway!



Here is Amanda sporting her new haircut and new steroid cheeks.


We can count on one finger the number of family outings that we've gone on in the last six months. Amanda was finally strong enough to get out of the house and walk on her own (for the most part), so we found a secluded place to watch the air show this weekend. Both girls lasted much longer than expected. Having the ice shack behind us and a Dad eager to splurge on his girls helped. I was the one that pooped out before they did.

We are finding new family past times. Scott now spends every Sunday morning teaching Amanda how to make french toast. She is getting pretty good at cracking the eggs. The girls eagerly put on their aprons before Scott's even up. The only problem is that Amanda really needs a hair net. Her hair is falling out everywhere!!! She's a walking comb over right now. Fortunately, she doesn't seem to care much, but is still reluctant to go completely bald by choice. Before my new vacuum explodes from all of the hair "gerbils" around the house, I'll hopefully be able to convince her to cut it all off soon. Fortunately, no hair was found in today's breakfast!

Next phase of Chemo

Not all of today's treatment went according to plan.

First, we found out all the testing results to determine which treatment round she goes on. Once again, we are very fortunate. She is doing very well and gets the lowest risk route. This means the fewest medications and the most optimal recovery outcome - YEAH! We were anticipating this route, but it is a relief to have it confirmed. We also opted for the non-clinical route. Because her prognosis is so good, and for several other reasons, we did not feel it necessarily beneficial or necessary for her to be part of a research study at this time. This also means fewer medications.

The change of plans was that she was not able to begin her new treatment regiment today as planned, so she didn't get any chemo. Her red blood counts were too low. She's very anemic right now, but they chose not to do a blood transfusion. Instead, they are going to give her body another break for a week and see if she can produce more red blood cells on her own. It prolongs her treatment a week. But the stronger she can be going into the next round, the better.

It also did not go according to plan as the doctor was concerned about her regular physical work-up. She's really struggling to walk. It is a side-effect of the intense steroids. But, she fell on her hip several days ago and has maimed that hip ever since. The doctor was concerned and had us work with a physical therapist today. She isolated muscle weakness in her right hip, or "weak butt muscles" as she put it. With all the sitting Amanda's been doing I would think her butt would be nice and strong! We have been assigned some exercises to have Amanda work on. We also did an x-ray on her hip to rule out an injury.

And I must point out that I don't think I heard all but a few complaints today. Compared to last weeks screaming fest, it was a nice change. I can thank the lack of steroids for that, and having Dad attend. I keep asking her why she's so ornery for me and not him. Suppose it's just a mom thing. (all you mom's should shake your head in agreement!) Despite having dad there to entertain her, she is doing much better with her mood. She is acting more herself. So we will enjoy another week of resting and building her back up physical and emotionally.