Friday, July 30, 2010

I'm a Cancer Mom

I did not write this, but I read it. And about every single remark is true from my perspective. Just thought I would share....you probably already know most of this if you read my blog! My hospital family all know it to be true.

I belong to a special group of women
My friends and I have an amazing bond.
We never wanted to be in this group,
Yet we are in, for life.
Maybe we have met, maybe we haven’t,
Yet our love for each other is boundless.
We know the pain the other one feels,
And we share our victories small or huge.
Words like chemo, IV, Zofran , bald heads
Are always parts of our conversations,
As well as roidrage, tears, and meltdowns…
We always know where the closest puke bucket is ,
We can hold it in one hand and if necessary,
Swallow the sandwich the other hand was holding.
We can drive to the hospital ,
Park in the dark parking garage
Make our way thru the halls of the hospital
And to the appropriate floor,
Settle in a room, turn the TV on,
Give instructions to the head nurse,
Silence loud beeping IV pumps,
Direct a wagon AND an IV pole
To the playroom without hitting anything
Make our way back to the correct room
And all this, mind you, With our eyes closed at any given time.
We know how to draw blood from lines
Sticking out of little kids chests.
We can hold them down with one hand ,
While a nasogastric tube is inserted in their little nose,
And be on the phone with their dads at the same time.
We can live for days on hospital food,
And on maybe only one meal a day .
We know the names of up to 20 different drugs ,
Their purpose, dosage and time to be taken.
We are always on call, 24 hours a day ,
Seven days a week.
We are used to not always looking our best,
Hard to do with only a few hours of sleep . M
ake up , hair styling, skirts are words of the past .
We have become addicted to texting ,
hospital, clinic, home, wherever…
We talk sometimes at all hours of the night ,
We know we can count on someone to be up.
Then for one of us , the world stops .
She has to walk away, broken.
This job is over .
The job is over, but the fight is on.
Remember , I said we were in this forever.
We are friends, sisters, temporary nurses,
We are each others rock, each others punching bag,
We listen , we vent , we cry , we laugh together .
We share our lives and our deaths
We share our pain and our victories.
We are strong, but not by choice ,
Sometimes we win , sometimes we lose,
But never are we defeated .
We are not nurses
We are not doctors,
We are cancer moms…

Thursday, July 29, 2010

First Tooth

Ally is perkier today. She swam today. It made me feel a lot better when I saw that. Also, we got news that Ally's liver level came down to the 140's (it was 486). Thank goodness it came down. I think it had everyone a little perplexed including two doctors. It still has to go below 45 to be normal. They are testing her again next week, until then we are chemo free. Which is good for Ally because we don't have to wake her up at night.

The kids have been doing a bible school at Peace Lutheran this week. They both love it. Even with Ally feeling a little less spunky, she really wanted to go to VBS with her friends. I made her promise to wash her hands. Anyway, today when I picked Evan up he had lost his first tooth! At VBS! It had been hanging on by a thread for a couple weeks. We just finished placing it under his pillow. I can't believe he has been my sweet boy for six whole years now (birthday coming soon). Here he is: (goofy picture)



Putting it in his special pillow so it won't get lost.
G'Night Evan.

Wednesday, July 28, 2010

Good news/bad news

We have a good news/bad news situation. I will definitely start with the good news....we got two of the three liver levels back today. And they were normal or "almost normal" considering normal to a leukemia kid is never the true normal. For my reference here, the bilirubin was 1.3 (normal is .2-1.0) and the AST was 43 (down from 173) The number I am waiting to hear is the ALT which was super high (468 and is supposed to be less than 45). The nurse I spoke to was thinking since the other liver levels went down, this one should too but I will find out for certain in the morning. In many ways, I feel like we dodged a major bullet. I was not wanting to do a liver biopsy, which was our next step. So I am keeping my fingers crossed that number does in fact trend down.

The bad news is that Jerad and I noticed Ally was feeling bad the last couple of days..not wanting to do anything and barely able to expend any energy. Today, my neighbor got the bonzai slide out and all the neighbor kids were slipping and sliding and playing in the water. Ally went out for five minutes and then sat inside. She was actually crying at this point of head pain. UGH. I try to not get upset and I knew her counts could be going low. It still SUCKS to the millionth degree to see a bunch of kids laughing and having fun and knowing my child is not able. Even after all this time, it can just stab me in the heart when I think of all the things she has missed/will miss, etc. So she sat inside and did some drawing and made another potholder and all the memories of last summer came flooding back to me. I get so mad sometimes I wanted to throw the potholder right out the window, amongst other things. We started out our summer very well, but I have to say that the whole last month has not gone as planned and has been filled with worry and misery for Jerad and I. It is flat wearing me out.

So onto the reason for the fatigue: when I got her counts today, her ANC ( the number we live by as to where/what we can do) was 210. Super low. Hasn't been that low since maybe February? What this means is she cannot fight off anything that may pass by her. She almost always gets a fever with low counts and if she does she becomes inpatient. It is about 1000 points lower than where they would like it. Dr B held her daily chemo...until it rebounds back up. Which it will, it should, but it will take some time. Basically, the doses of daily chemo that she has been getting are too much....and this is why they told us not to go anywhere etc, and to give them some time to get it worked out. They will lower the amount she gets when they start her back up.

Sadly, this weekend was Jerad's high school reunion (20!) and he has friends coming into town. We were supposed to head to his hometown (2 hours aways) and had even arranged some adult time with us hanging out with his friends. There is also giant benefit concert on Saturday night, with all the proceeds going to LLS for Ally's Army. And it is my sister in laws baby shower. Big Weekend. Lots of plans. And, of course, all the plans are getting screwed up at the last minute. Jerad will go and see everybody and I will sit home with the kids and pray we don't go inpatient. And I will get mad. Not at anyone, but just at the situation. I get tired of everything always being taken from me....always ripped away at the last minute. I could read back through this blog and find countless other times this has happened. I am hoping to get to that concert on Saturday night anyway....but it won't be without tremendous worry weighing me down.

Although I am mad and just spent the majority of my blog post ranting, I do have to say that I was so happy about the liver numbers. It is all good......this disease can beat us down, and make me mad, and take things away from me....but as long as we are beating it, that's what matters. And yes I can complain, because I get sick of always thinking it could be worse......it could always be better too. And it will. Someday.

Monday, July 26, 2010

GI Consult

As I had somewhat prepared myself for, we got little answers today on Ally's liver numbers. We met with Dr Muniyappa, from Gastroenterology at Children's. She examined Ally, but you can't really tell anything by looking at her. She remarked that she thought Ally looked healthy. She wanted some time to review Ally's chart...and the chart is literally about five inches thick, so I think it will take her some time. She wants to check the liver numbers again on Wednesday. She was also going to run a few other tests looking for markers on a few things. She was going to discuss the case with her partner.

She thought the numbers could be caused by a virus, but then they should be going down (which they haven't yet). She was interested in looking at Ally's meds, because she said meds can cause this condition. I had read that methotrexate can do some of this, and that is the chemo she is currently taking. She mentioned a disease called HLH, which I didn't want to hear because another leukemia patient we know is currently dealing with this...and it is not curable. But she said she really didn't think that could be it because Ally is not appearing sick/symptomatic in any way.
So again, not too many answers until the labs are drawn on Wednesday again. We just have to pray those numbers go down. If they continue to go up, our next step is a liver biopsy. And I really really don't want to go that route. She has been through enough already.

Ally is on her fourth day of five of the monthly steroids. This month the steroids do seem to be making her more subdued. She gets very quiet and reclusive. She is not as bad as she was with the Decadron, but we are seeing some of the effects. Her sleeping and eating patterns are shifting also.
Thank you to the army for the prayers. Thank you to all who are organizing a concert for this coming Saturday night....the band is called Live Bait and they are playing a benefit near Jerad's hometown with the proceeds going to LLS in Ally's Army's name. They have been working on this project for nearly a year!

I also wanted to share some pictures from a fun event that we were invited to courtesy of Special Wish Foundation. They invited all the wish kids to come out for a private viewing of the Blue Angels as they practiced their routine for the Dayton Air Show. After almost an hour long performance, (breathtaking really) they got out of their jets and walked over to the kids and signed autographs, did pictures etc. Thank you so much for including us in this annual event and we will certainly be there every year that we can!

Just like Top Gun
Ally is wearing the light blue hat towards the front right...all the wish kids here.

Jerad took some great shots. He liked the show more than anybody!


Sunday, July 25, 2010

This is Cute



I absolutely loved this picture. I was surprised to open up the paper the day after the ball game and see it. I didn't even know someone took the picture, much less give anyone any information about our girl. Ally just looks so innocent in the picture. And happy. I still don't think she was quite herself that night, so seeing her look so happy made me very happy. I love seeing my Dad encouraging her. It will go down as one of my favorite pictures and it tells such a story just by looking at it.

Ally went to the clinic on Thursday for her monthly chemo infusion. The actual appointment went very well. However I wasn't too thrilled with the results. Her ANC had dropped to 630. This is about half of what they would like it to be. The goal is to keep it about 1200-1500. Dr B said not to be concerned, that he would decrease the amount of her daily medications that she gets and try to bring it back up. So we have to recheck it in a week. It is funny because we used to feel so safe if the ANC was over 500, but once we are used to it being higher, now we are more tentative with this low ANC.

The most concerning part of the appointment was her liver numbers. The liver numbers were not back from the lab yet, and her chemo was done, so Dr B let us go home and said they would call. Later in the day, I got a message that her AST and ALT numbers were both very high. Dr B had been wanting her to see a GI (stomach) specialist anyway, because much of the past year Ally has dealt with stomach pain. It has been her primary complaint. Now that these numbers were higher, it became more of a priority. I really don't know anything about it...except the numbers are suppposed to be between 40-60 and hers are around 480. Alarming.

It is all scary. The chemo that saved her from the leukemia is known for causing organ damage. She will be watched for something like 20 years for long term side effects. The chemos themselves can cause secondary cancers. They are such strong and powerful drugs especially in a child who is still growing/developing. I am hoping we are not looking at something like this, but rather hoping that these numbers may still be spiked up from that horrible virus (that Dr B referred to as a hepatitis?) He did think the numbers should be going down, so we are getting them tested again this week. And we are seeing the GI specialist tomorrow.

I am a bit afraid we are not going to get any answers tomorrow. I am kinda expecting that actually. It is part of the territory that we are walking through. Some people think that the doctors have all the answers and know what to do. Although they are very very smart and have all of my respect, the human body is still somewhat of a puzzle and sometimes they just don't know what is going on.

The really good news is that Ally seems normal to me again. Just in the last couple of days. She is smiling and being silly and definitely has more energy. She does not appear to be a girl that is sick, and that makes our minds a little more settled. Even though we know something is going on with the liver. The intuition kicks in and she seems okay to me. We are trying to keep the worry at bay.

With that being said, we would still appreciate any and all prayers that the doctors know exactly what to do with her situation. That they can fix it and that we will start going down a smoother road again. We continue to keep all the children and also several adults we know in our prayers as they battle this dreadful disease.

Wednesday, July 21, 2010

Monthly Chemo

Tomorrow is monthly chemo day. She gets Vincristin through her port. She will also get her monthly antibiotic infusion which keeps her safe from who knows what germs. We have seen a lot of the hospital lately, but she is definitely better. She will get her bloodwork/counts done while she is there. This provides me with a bit of reassurance that everything is ok. I am worrying way more than I thought I ever would. I can't help it and I can't change it so I guess I have to learn to live with it. It hits me a lot when I am driving for some reason...and have time to think. So the clinic visit tomorrow is a good thing. She will also go back on five days of steroids starting tomorrow. I hope she handles them well.

I can't remember if I mentioned this on here, but Ally had been sleeping a lot. Lots of hours at night (extra) and then pretty much whenever she was riding in the car. Also whenever she sat down to watch TV. For instance, it could be 10:30 in the morning, but she would fall asleep. This combined with the virus really added to my worry. Then the virus left, but she still kept doing the sleepy thing. After reading her friend Bonnie's blog, I started to realize that it could be from the radiation. Jerad remembered the radiation docs mentioning delayed onset tiredness. And Bonnie's Mom mentioned that she was sleeping a bunch. (and had done radiation just before Ally) I asked Dr B and he said.....yes it is true. About 6-8 weeks after the cranial radiation, the kids get this delayed effect of sleeping. The timing is right on and I think this has happened to Ally.

I say this now, but it does seem to be wearing off a bit. I drove a full 30 minutes with her today, and she did not fall asleep. She has also seemed extra quiet to me lately, but I am hoping that this will wear off too. My mind is thinking...what the heck did that radiation do that causes this tiredness now? Are her cells finally dying off or being recreated or what? I will probably never know.

I will update more after her dr visit tomorrow. One more very HUGE thing though: Ally's hair is coming back. Her eyebrows too. It is amazing to see and I swear I can tell a difference each and every day. I rub her little head all the time just like I did to my babies.

If my prayers are answered, I will never ever again get to rub a perfectly bald head. I pray that will be the case.

Monday, July 19, 2010

Here it is - the big FIRST PITCH!! As you'll see from the video, Ally threw a perfect strike! Not bad after she felt so terrible last week that she could barely get the ball to me from even closer range. I was one proud papa for sure, and I even remembered to catch the ball. Ally was recognized on the field for Ally's Army being the highest fundraiser in Dayton and Cincinnati for the Light the Night walk, then Bob was recognized first for being Dayton's Man of the Year, then for the National Man of the Year. They even announced that combined between the Man of the Year competition and Ally's Army's walk that we raised $470,000!! After that came the moment we have been waiting/nervous for (not Ally, she didn't seem to have a care in the world!). It was a dual pitch with Ally and another survivor Leah throwing out the simultaneous FIRST PITCH...

video

video
Thank You to the Leukemia & Lymphoma Society and to the Cincinnati Reds for making this a night that Janel and I - and I think our kids and the Army - will forever remember. I told Ally when I was tucking her in that I honestly don't think I've ever met someone who has thrown out a first pitch. Special thanks to the 50 Army members that made the trip down to Cincinnati, driving hours to see a memorable few minutes for our little girl. Our group of Orange stands out even at a Reds game. The rain didn't cooperate, and unfortunately most of us took off after 3 innings when a storm came through, but it was a great night nonetheless. And the Reds did make sure to win when the tarps finally came off.

Arriving at the Game
Ally's Army "Media Row" as soon as we walked onto the field

Evan & Ally at ground zero behind home plate

Mrs. Red and a very frightened Carly (who fears all mascots)

Ally's Army rules the scoreboard

Bob raising Ally's hand as they announced the $470,000 raised!

Just before we headed to the mound... The aftermath, enjoying the game, family, friends, LaRosa's pizza and nachos (yes, she is now eating even if small amounts)Mommy and Evan with a birds-eye view

Carly excited to have one of her favorite twin cousins Abby on Grandma's lapAnd since you can't just show one twin, Sofie with my brother Brad modeling the new Ally's Army shirts, size TT (teenie tiny)

Sunday, July 18, 2010

Happy Birthday Carly!

Check out her shoes!

Man....I have a lot I want to write about, that I can't even write that much today. It would be too much to read. I guess I can spread it out.

First and foremost, the medical information...Ally went back to clinic on Friday and had more bloodwork. Her bilirubin level continued to go down (thank you God) which means that her liver is recovering from what they think was a horrible virus. Horrible in that it lasted for about 2 weeks and took so much from her. And also horrible that Jerad and I were fearing the worst. She goes back in for her monthly chemo on Thursday, so we will again get her bloodwork looked at. It makes me feel so much better to look at everything.

As promised before...Jerad's birthday story. Jerad wanted to celebrate his birthday this year with a couples sporting event type contest. Last year, his birthday consisted of trying to survive on weeks without sleep and I believe we also had a chemo taking contest. So this year, I hoped he would get to have a little more fun. All the couples were going to take turns doing events (putting contest, golf drive, football throw, trivia, even riding the bull...to name a few events). We were using my Dad's limobus to get us from place to place. We had started out having a few drinks at the Greene and were headed to the Bellbrook Driving Range. As we were slowing to a stoplight, and oblivious to all 13 people on the bus, a car slammed into the side of our bus. And noone wears seat belts when on such a bus. People went flying, tables were flying, food and drinks were spilled everywhere, but for the most part we were stunned but okay. We looked out the window to see the car that T-boned into the side of our bus, and also a car turned over on its roof. The impact had punctured our gas tank, and the smell of gas was quite extreme. We were hurried off the bus quite quickly due to the danger of it.

Little did we know, until we saw the police surrounded the overturned car with guns drawn, that we had just somehow helped to catch a murderer. The man in the car was named Jeff Bedinger...he had killed his 22 year old stepson just the day before and also kidnapped his 7 year old boy. There was a huge manhunt for him (supposedly nationwide) and an Amber alert had been posted on him. His car was flipped over and the gun he used to commit the murder was laying in the street....feet from our limobus. The police had been chasing him at speeds of over 70 mph and the end result was our accident.
Since it was a police chase, the whole thing was captured on the cruiser cam. You can watch the accident here, if you like, and the abrupt end to Jerad's birthday. My friend Nicki had to go to the ER as she got hit in the face we believe by her husband. Luckily, she was okay but still has a black eye even 10 days later.
http://www.whiotv.com/video/24210880/index.html

So I guess I can add being in the wrong place at the wrong time during a police chase to my life's list. Quite honestly, being in that huge bus, we probably helped spare someone's life. If it would have been a car, I am not sure the result would not have been good. I was quite sad about the whole thing, and felt horrible that my Dad's bus was (possibly) totaled as a result. The whole time I was so worried about my daughter too...I would like to erase it all from my memory.

Today is my baby girl Car-Car's birthday. My sweet little girl is 3! It is very hard to believe and I always feel as if I have missed out on much of her life. Mom got sick when she was six months old, so most of her life I have been preoccupied caring for other people. I do my best with her.

She had the ultimate birthday treat....she got to have a sleepover at her Pa's house last night (Jerad and I went to my high school reunion, more on that at later date). She woke up to a "Hello Kitty Pancake Party" complete with special table decorations, plates, cups, etc....and the special treat of silly bands for all three kids. Miss Barbara knows whats up with kids loving those. Thank you Dad for keeping the kiddlings all night...it was such a treat for them all! (first time since Ally was diagnosed) Thank you Barbara for making her party so special and for my "mommy" hello kitty pajamas. Jerad loves when I wear Hello Kitty pjs.

She was treated like a royal princess all day, and had some buddies over for more cake after dinner. She spent the whole day in her special skirt and birthday shirt and her "princess" shoes.




All Hello Kittied out....


cupcakes right after pancakes....whoa

With her Pa....

special outfit..





I have even more stories I would like to share and remember, but must end it now before I lose everybody.

Ally is throwing out the first pitch at the Reds game tomorrow night. I will get some video I hope. It is on Foxsports Ohio at 7pm but I am guessing they won't show the pitch on TV. We have 50 Ally's Army people going with us!

I do have two special prayer requests that I would ask of everyone. My brother in law Mike has a family member that just found out she has cancer. And it is all over her body and they are not sure how much time she has left. My sister in law, Amanda, asked if the army could say a few extra prayers for them.

And one of Ally's fellow ALL fighters, Tori, from New Jersey, was in the middle of her Maintenance phase. Upon doing a routine spinal tap, they discovered leukemia cells had returned. I have become friends with them online, and had just talked to her Mom earlier in the week when I was so upset. (we help each other out) I am sickened by it, and ask for prayers for their whole family as their battle intensifies.

Thursday, July 15, 2010

Fingers Crossed

Fingers crossed. Holding my breath. Don't even really want to say it for fear of jinxing it....but I think she has turned the corner. I thought this a little bit on Monday too, so that is why I am a little bit tentative to say it, but I am hoping it is true. Monday was decent. Tuesday was bad. Wednesday, right after I wrote the blog actually, she started doubling over in pain. Crying. I could wait no longer and took her right down to the hospital. This time...I was the one crying too...all the way down to the hospital, to the blood lab, in front of the xray tech, and then for the nurse in the Hemoc clinic. (none of which has ever seen me breaking down) They took six more vials of blood (from her ARM too!)...the xray determined that she had nothing in her stomach...(not rocket science since she hasn't eaten anything in forever)


We waited. I told Dr B how I had been researching. How I couldn't just sit idle and let this get the best of her. He chuckles. He always chuckles at me. I said...well I am not trying to be a doctor here, I trust you all the way.....but what about Hepatitis?? He chuckles more and says Janel....that is what we are already looking for. I just wish he would have told me and saved me all that research.



The bottom line on what he is thinking now is that she had a virus. A really really bad virus. (like a hepatitis or nasty intestinal thing, etc) One that could have entered her body from some bad water. (she is not supposed to ever have well water, even if treated, and she accidentally did) The virus resulted in the fevers (almost a week) and the two trips to the ER. What is left now are elevated liver levels, as her body processes some of this and gets it out. And it probably also resulted in some of her red blood cells breaking down...which is part of that original Hemolysis assumption. All of the viral tests that he ran came back negative so far.


Tomorrow we are going back to the hospital (the fifth time in 10 days). They are running more hepatitis tests on her. They are also going to check those liver levels....they did start to come back down on Wednesday, which is a good sign. He wants to make sure they keep on heading downward.


They talked about putting her back on the TPN: IV nutrition. Because she hasn't eaten in so long, but we decided to wait a while longer and he put her on an appetite stimulant instead.


She did start eating a tiny bit today. 2 squares of Marions Pizza for lunch (tiny tiny squares)...but it was something. She actually went back to our pool for the first time in two weeks. This was a very very good sign. She ate a few snacks, a small bit of dinner, a good portion of ice cream. It is the most her body has seen in a long while.


Thank you so much to all of you who have prayed and so many of you who have reached out to us in this time of worry. It seems like possibly the longest and scariest 10 days we have seen yet. Because for a long while we thought the cancer might be coming back. It is a horrible fear that eats parents alive. And the unknown is so much worse than anything else.


Special thank you to Reid and Susan Murphy, good friends of our family from Florida, who were up at dawn this morning and calling in to check on us. (She just wore her Mote Aquarium hat yesterday too!)


Thanks to the Dan and Marcia Schmitz....who live up towards our lakehouse and helped me out with a little research and caring thoughts for our girl. Can't wait to see you on the 22nd.


And thank you to the Special Wish organization for giving us a little news to brighten our day...the Wizards are back into taping their fourth season. We may be going to Hollywood sooner than we thought. And also thank you to Special Wish for allowing Ally and her siblings a special visit with the Blue Angels Airshow team tomorrow. We are quite excited for that.


In amongst all of this stress, we had Jerad's birthday too. And a lot of you know the story of Jerad's "epic" celebration, but a lot you don't and I am going to save that long story for another post....stay tuned. It is a memorable story. Possibly the most memorable story I have written yet. Happy Birthday Jerad!

Wednesday, July 14, 2010

Very Discouraged

After making somewhat of an improvement on Monday, Ally took a turn for the worse on Tuesday. No food....nothing short of a a few pringles and a few sips of milkshake. When I put her dinner in front of her, she just laid her head on the table. A few minutes later she was asleep. It is very discouraging. She has no energy. But who would have energy if they hadn't eaten much in 10 days?

I also talked to Dr B. I called into the clinic to get the results of the test and he happened to answer the phone. (Which he never does.) Well her Coombs test came back negative (We thought it would be positive) I asked him if that meant she DID NOT have the hemolysis (see yesterday's post) and he said not necessarily. He wanted me to continue to check her for either a pale color or a yellow color (jaundice), give her some medicine called Bentyl (for stomach spasms), and come back on Thursday. The virus tests were still pending.

The poor girl did make it to her golf camp...but was asleep within minutes of getting home from the 2 hour event. She is there again right now actually, but felt really cruddy this morning. She still wanted to try it.

I can't stand not knowing what is going on with her. I feel so helpless and want to take it away from her. It is one thing to know she is suffering from chemo and we just have to push through it. It is another thing to have her so sick and not know why. And watch her continue to not eat. So I did the only thing I know....I researched for hours yesterday. There are several things wrong with her blood (in addition to all the things that are always wrong with her blood) Most of which have to do with her liver. After looking at many things, I started looking at viral hepatitis. She had every symptom:

Fevers
abdominal pain
profound loss of appetite
fatigue
excessive sleeping

It is also a disease that causes the liver levels to rise. (AST, ALT and Bilirubin) All of hers are elevated.

It seems very possible to me. Dr Mom. I will mention to Dr B tomorrow. He knows I do my homework. Maybe it is still the hemolysis too...but that condition really doesn't cause any pain or fevers. And he as much the other day to me. I am hoping the battery of viral tests they did will have tested for this (we did not have the results back yet).

On the roller coaster of worry that we have been riding....I am back climbing to the top of the hill. My worry is high again. I wish this was going as planned. I am trying to hold onto my faith.

I read this the other day "The strongest trees are found not in the thick shelter of the forest but out in the open, where winds from every direction bear down upon them. The fierce winds bend and twist them until they become giant in stature." And that is how I feel. We have made it through so much, certainly we should be able to handle this.

With that being said, I will continue to ask for extra prayers for Ally.

Monday, July 12, 2010

Hemolysis???

We just got back from the hospital and I will try to fill you in, although it is complicated and I am not even sure I understand it all.

I could tell Dr B was a bit worried today. A week’s worth of fevers (not good)..the other physical signs (not eating, more sleeping) and Ally’s bilirubin levels were up. This can indicate something wrong with the liver. We had to go to ultrasound and get scans of her liver, kidneys, gall bladder, spleen, and bladder. The tech took 71 pictures, which had me very nervous that something must be wrong. About the time we walked back upstairs, Dr B brought in the radiology report that everything was fine. I nearly collapsed from relief.

He ran all sorts of additional blood tests on her…some looking at different viruses that may be causing this. But usually viruses don’t last a week, so that was sort of secondary.

He put all her blood tests results from June and July side by side and started looking at the trends…from a leukemia perspective and the possibility of relapse all of her numbers looked good. Her ANC was trending down, and hemoglobin, etc…indicating that the chemo is doing what it is supposed to do. They saw no blasts (cancer cells) in her blood. He did see that the bilirubin was trending up (not good) and also that her red blood cells were not holding up as they should have been. They were destroying themselves (or something was destroying them). He saw a few odd things on the smear of her red blood cells that have never been there. The bilirubin was up as her body was trying to get rid of these immature red blood cells.

He is a very smart man and he put all these things together and says he thinks she has a condition called Hemolysis. It can be caused by a virus or it can be caused by drugs. It is very rare. He has never actually seen it be caused by drugs, so he believes she had a virus that caused it (thus the fevers and not feeling well). He ran yet another test (Coombs test) to determine if her red blood cells do in fact have antibodies working against them. He will call with the results.

He told me not to worry. It actually has nothing to do with the leukemia…it is separate blood condition. First and foremost, it is treatable and not life threatening, etc. We have to go back Thursday afternoon to see if things are still trending up (the bilirubin) and check another CBC. At that time he will determine a treatment plan which will most likely include several weeks of steroids (yuck) and also and IVIG infusion…immunity booster which she has had before.

He said it is really rare, but we all know that Ally seems to find the rare things (eg pancreatitis). In his typical Dr Broxson manner he put me at ease and I cried tears of relief after fearing a relapse was imminent.

We are not certain this is what it is, but I am thinking and hoping he is correct.

Ally has not had a fever today and just ate some chicken noodle soup and a cookie. A start. She seems to have a little more energy too. She says with a smile that she really wants to go to golf camp tomorrow. I caught her singing a few times and doing goofy voices with her sister. These tell me that she is feeling better. Her stomach has not hurt today yet.

Sorry for the long bit of medical information. Just wanted to try to capture it all before I forget myself. Having a (possible) answer has helped me out a lot. Not knowing is the worst.

I am hoping to see continued improvement. She hasn't seen the pool in about 8 days now (a world record for this summer)

Sunday, July 11, 2010

Quick Update

Just a quick update on Ally again. She continues to have fevers. They come and they go. Last night they reached 101.6 again, so she spent another night in the ER (11pm to 4am). She didn't get admitted, they sent her home. Her ANC had dropped a bit to 2300 which actually made me very happy. High numbers are never a good sign either. She is still sleeping a lot...but I have been told that could be a delayed onset thing from her radiation in May. She is not eating. She hasn't eaten much of anything in a week. She is down between 6 and 7 pounds. Tonight I was actually trying to bribe her eat with silly band bracelets. It worked a little....

She got more IV antibiotics today. And will get another dose tomorrow. We are really waiting to see one of her docs in the clinic tomorrow (hoping for Dr B of course). The ER docs just treat the immediate need (fever) and don't really know much about the chemo drugs and/or the cancer. It is frustrating when your child gets sick over the weekend or in the middle of the night. Her bloodwork showed she was jaundiced, but noone mentioned anything to us...I just read that on her bloodwork sheet. So need to ask about that too...

She did perk up a tiny bit today...well better than Saturday anyway. That made me happy. I am trying to take it all in stride and not let the worry get the best of me. It had a tight chokehold on me Thurs/Fri/Sat. I feel a little better today. But obviously want to get to the bottom of this and make my child feel well again. Poor girl.

Thanks for all the messages and prayers and support given today. They are uplifting to us.

One more thing...I need to find a way to scan it in, but there was a beautiful ad in the Sunday paper today announcing Dad as the national Man of the Year. There was also an article...both were in the front two sections of the paper. Check the ad out if you live here.

You can read the article here.
http://www.daytondailynews.com/news/dayton-news/beavercreek-man-named-man-of-the-year-by-leukemia-society-805670.html

Saturday, July 10, 2010

Prayers.

I know I haven't posted in a while. I don't like it. I get too far behind and then I lose track and then I don't feel like doing it because I don't know where to start. And a few of you have been asking why I haven't posted.

We were busy doing some fun things (Kings Island, Aquarium)...but we also had some not so fun things going on. I can write about that later. Mostly, Jerad and I have been worried about Ally. She hasn't been eating. At all. She has run some low grade fevers, and a high one. She is sleeping extra. At times she is very quiet and not herself. Something has her down. It is impossible "not to worry" or whatever people try to tell you. I do want to get to the bottom of what is going on. It is not supposed to be like this.

I will update when I know more. For now, I am kindly asking for some extra prayers for her.

Tuesday, July 6, 2010

ER visit update

So....a trip to the ER. She got her port accessed there by our neighbor, friend, and (clutch) nurse Lara. They always have a little trouble in the ER because they don't really deal with ports, but Lara helped her out (Thank you). Her fever spiked to 102.2 there. They started her very quickly on the IV antibiotics and waited for her bloodwork to come back. Her white count was high enough so they sent her home after she completed a urine test. Noone could explain the fever. She got home at 1:30 am. She had to take her chemo at 2 am and my sweet husband stayed up to give it to her. Today she slept in until NOON.

At that point she was running a low grade fever (100)...they would not consider it a fever though. I found out her counts were not low at all, but rather very high 3600. This sent me into a panic yet again. It is so hard...don't want them too low, but don't want them too high. Her white blood cells escalated when she was diagnosed, so that is my mind trying to play me into worrying. After several calls to the clinic about various things, Dr B said not to worry. I trust him. And Ally is acting completely fine. They said maybe she had overdone it over the weekend. But I have never heard of "overdoing it" causing a fever. I think it will just go down into the book of unexplainable.

We canceled our mini-vacation and a nurse came out this afternoon to give her another round of IV antibiotics. Dr B said this was enough, since her ANC was so high, and they de-accessed her. Which is very good, because we have tickets for Kings Island (amusement park) for Wednesday and they are only valid that day. Many of our hospital friends will be there.....it is a treat for them to get to go courtesy of an organization called A Kid Again. Funny thing is, the nurse told me they wrote "trying to go to Kings Island on Wednesday" on her ER chart. I never want to compromise anything, but I do want her to be able to go.

So we will try it. It is gonna be a scorching hot day.

I have tried to lay my worries to rest yet again. This transition has been quite hard on the parents....Thankfully, Ally doesn't worry, it is all great to her. But Mom and Dad are having a bit of a rough time with it. We still have a lot of healing to do ourselves. I try to do what my friend Lisa tells me and "turn it all over to God every night before you go to sleep" And that is what I do because I am quite helpless to do anything else.

A couple thank yous:
Thank you to Doug Sorrell (who you might recognize as our auctioneer the night of Ally's Fundraiser party at Fox Hill) for taking Ally (AND EVAN) on a horse ride after the Beavercreek 4th of July Parade. The kids were thrilled!

This is Doug. He is one of those "uber cool" people from the Wild Wild West. Can't you tell? I typically hang on every word he says because he is so interesting to me. I guess that is why he is an auctioneer! Oh and that is Billie, his horse from Montana, or was it Wyoming?.


Thank you to my friend Nicki who tirelessly held Carly for over an hour and talked her through all the fireworks. She is now no longer afraid thanks to the coaching.




And one more HUGE thank you, and I am way overdue on this one! Thank you to Deb Wine. For an entire 13 months, Deb has sent Ally one, two, three, four, cards a week. Tons of mail. Lots of people used to send mail. Now it is just Deb. Deb never forgets. She wins the award for perseverance. Thank you Deb for always encouraging us. We love you too.

Thanks to everyone for praying for my family.

Monday, July 5, 2010

Bummer

Well, we did indeed enjoy the three day weekend. A little swimming, a lot of friends, cookouts, fireworks, a parade, some playgrounds etc. So..... a real bummer when I was putting Ally to bed tonight (after a full day of swimming) and she felt warm. She had a 101.4 fever. No way, I said. We were packing up for our mini vacation...we were leaving in the morning to go to the aquarium, staying overnight, and then using some tickets we got for Kings Island on Wednesday. Why do we always have this horrible problem with timing? Took it again, 101.6. Made her go sit downstairs where it was cooler. She had just gotten out of the hot shower. 45 minutes later it was still 101.6. AHHHHHHHHHHHHH.

Paged the doctor on call and I woke up Dr B (I think). He has orders for her to get antibiotics in the ER. If her counts are high enough, she will get to come home. But yesterday, Jerad and I started thinking her counts were getting pretty low. She was showing some signs. So we will see. Her vacation suitcase quickly became her hospital bag. She is packed in case she gets admitted.

I think either way our vacation is not gonna happen tomorrow. She will get three days of antibiotics at a minimum. And no more swimming because her needle will be in.

Yesterday, when she seemed sluggish, not eating, etc....I started my worrying. Really worrying. Today I felt better, but now it is back again. The worry is really hard to avoid, let me tell you. I am trying positive thinking. But it is hard.

More to come when we find out what's going on with her bloodwork....

Friday, July 2, 2010

Favor

We are continuing to enjoy our summer. Every. Single. Day. We are living life to the fullest, getting little sleep, and making up for lost time. We have a whole summer's worth of "stuff" to make up for. This week has been pool time, catching up with some old friends, working in our garden, baseball (watching and playing), and spending a little time at the lake. Maybe a parade, some fireworks, or more pool time is in our future. Just normal regular stuff! We are also happy to be going to Kings Island next week as a guest of A Kid Again...which is sort of like a local special wish organization.


Ally is doing alright with her daily chemo. So far, so good. They do want to test her counts on Tuesday. Which may bring some anxiety (for me, not her). I am hoping she stays in the adequate range and we can keep on keeping on like we have.


Thank you for all your wonderful comments about my Dad and the LLS campaign. It was a lot of work, but it paid off in a huge way. It paid off because maybe it will help someone down the road to deal with this disease a little easier.


I have a FAVOR to ask of my army. Another big favor...but this one is free and easy. It might take a couple minutes of your time. Actually, one of Ally's Dr's (Dr Dole) called me at home last night and asked me to reach out to all of you. He knows we are BIG. And when one of Ally's doctors ask for something, I will pretty much do anything to help them. After all, they have saved my daughter. So now I am asking you....


His son is working on a grant project to bring money to the needy patient Hemotology/Oncology fund. This helps families as they are unable to work, pay gas bills, utility bills, phone bills, food, etc. Many of the Hemoc parents are unable to work at all...they just forget about the job and take care of their kids. The Needy Patient Fund is asking supporters to vote for their project EVERY DAY from now through the end of July.

WE NEED YOUR VOTES at
http://www.refresheverything.com/needypatient

Once you have voted, WE NEED YOUR FRIENDS' VOTES AND THEIR FRIENDS’ VOTES!!! YOU CAN VOTE ONCE A DAY, EVERY DAY UNTIL JULY 31. This is a team effort, and the more people we get to vote for us, the closer we are to winning $25,000 to help our families in need. You can only vote online – ONCE A DAY, EVERYDAY!!!! VOTE TODAY. EVERYDAY, EVERY VOTE COUNTS.

Post to your Facebook, retweet on Twitter, email your friends and colleagues: every little bit counts! Thank you for your support.

He is in 69th place right now, the top ten get the money.....Please, can you help????