Catching Up

It feels like forever since I've posted on here. We haven't been to Atlanta since her last appointment on December 14. It is SO nice to not be in Atlanta every week!! I'm not used to it yet. I keep feeling like I've forgotten something very important that we're supposed to be doing.

Overall Hannah has felt good in this Maintenance Phase. She had a few days where she didn't feel well after her last treatment in Atlanta but bounced back and felt great for Christmas. She has a couple of days each week where she doesn't feel well, and the rest of the week she feels really good. (She gets more oral chemo on the weekends than during the week, so that probably has something to do with it).

We have received an amazing amount of cards in the mail through Cards For A Cure. The grand total is 3862! We received cards from 41 states, 2 Canadian provinces, Germany and Spain. We never imagined that this many cards would be mailed to her. What a wonderful idea for a project and what special, thoughtful, loving and incredible people participated! Thank you everyone who made this possible!

I think Hannah's hair may be growing back (very little if at all - it's hard to tell when I'm with her every day). A lot of people say that after hair falls out because of chemotherapy it grows back as a different color and texture. I think I can see some darker hair growing in so I wonder if it will be brown when it all comes back.


Want to know what crazy is? Evan had fever with no other symptoms for six days over the Christmas holidays. I knew it wasn't something contagious because Hannah would have gotten it. He was extra tired, pale, didn't want to eat, and tested negative for flu and strep at the doctor. Siblings of kids with Leukemia have a 2-4 times greater risk for getting it too, so of course I was terrified that he had it. Hannah's Leukemia started with these same symptoms (except hers was to the extreme - high fever that wouldn't go away with ibuprofen, very lifeless - where she wouldn't lift her head off the pillow, VERY pale, wouldn't eat, didn't respond to the antibiotics that she took, etc.) It is crazy that a mom would jump to the conclusion that her son had cancer just because he had a fever! I wonder if I will be crazy forever. (I hope not - a friend who went through cancer with her son said that it gets better. I'm holding on to that!)


We had Hannah's blood counts checked this week and her doctors said that they are pretty good and that we can start to do some normal things now. She was able to be around all of her cousins for Christmas and will even get to go to church tomorrow for the first time in months!

Good News!

Hannah had an appointment today that we thought was going to start Phase 5. This phase should have lasted two months with us going for appointments every ten days (her next appointment being the day after Christmas). Just before she was sedated for her procedure today, her doctor came into our room and told us that they had given us the wrong schedule and that Hannah started Maintenance today. This is wonderful news! Everyone we have met counts down the days to Maintenance. During this time she will only have to go for appointments once a month. She will continue this same schedule until she is done with all of her treatments in about a year and a half. Maintenance doesn't mean that she is through. She will still have regular lumbar punctures, IV chemo, steroids and two oral chemos, but it will be great for her to not have to go to the hospital every week. We were thrilled when her doctor told us this news! I can't tell you how relieved I am that these past few months (especially the last two) are behind us! It finally feels like we have made a big step towards her recovery. For the first time I can see a small light at the end of the tunnel!

Since this was a very special day for us, we decided to celebrate by going to the Georgia Aquarium. (We have never been). Hannah loved it. The dolphin show was her favorite. It felt so strange to have her out in public, around crowds of people. I had to keep telling myself that her counts are up and that her doctor said it was okay to be there.

No Appointment This Week

Hannah's counts weren't high enough to go to her appointment this week. This means we will wait until next Friday to start her next phase of treatment. One part of my heart is relieved that her body gets to rest and heal some with this break. Another part knows that in order to treat this disease her body is supposed to be hit hard, so maybe a break isn't the best thing. The other part wants to just get all of this over with, the sooner the better.

Since her counts are still so low, we continue to try to stay home as much as possible. Many, many people have made this a much brighter time for us. We are receiving LOTS of cards every day in the mail (the current count is 1246!!) The kids (and me!) wait for the mail each morning and LOVE opening all of the cards. It has been amazing to see how many people have taken the time to send us a card - most of whom we don't even know! A sweet friend of mine had the great idea of marking a map as to where all of the cards are coming from. (Thank you, Mary!) It is so exciting to see them come from all over the country!

You can read about this project at the following links:

Cards for a Cure

Cards for a Cure

Thank you to everyone who has made this Christmas so special for us! I wish I could say thank you to each of you personally. Thank you Angie and Christy for making this possible!

Home!

We are home! Nothing feels better than your own bed after spending a couple of nights at the hospital! No bacteria grew in Hannah's blood cultures, so her doctors let us come home yesterday. She feels good today besides being grouchy and tired. Her blood counts are still extremely low. A normal ANC for a healthy child is above 1500. Hannah's ANC is 140. We are trying to be very careful by staying home, disinfecting the house, washing hands, etc. We will get her blood tested again in the middle of this week to see if her counts can get high enough to get her chemo on Friday. If they aren't above 750 we will have to wait and that will delay her treatment schedule.

Hannah insisted on pulling the wagon full of our bags when we were leaving the hospital.

As we were walking out of the hospital I got one of those heart-wrenching, time-stopping, knock-the-breath-out-of-you realizations. Our child got better and was able to go home! We got to walk out of the hospital with our child! Some parents don't get to do that because their child doesn't get better. Of course I always knew this, but it hit me at that moment that other parents make that same walk under much different circumstances, without their child. I pray that this permanently changes my perspective as a mother and in all areas of life. I have nothing to complain about! Each day is such a gift and a blessing! 

Fever

Hannah started running fever around midnight last night. Her doctors told us to go to the ER. We spent the rest of the night at the Emergency Center at Phoebe. While we were there they were able to get her fever down. Her CBC showed that her counts are very low -- so low that her doctors had us come up to Egleston by ambulance. We arrived here around 10:00 a.m., then stayed in their Emergency Department until 1:00. Since her counts are so low they want to keep her, giving her antibiotics, for at least 48 hours. They aren't sure what caused the fever and said that it is common not to be able to know for sure. When the body has so few white blood cells, anything can cause a fever - even just the bacteria in our mouths, for example.

Hannah feels good and has been very brave. I can't imagine how scary it is for a little one to be in emergency rooms, have unfamiliar doctors and nurses working on her, and be strapped up and wheeled into an ambulance. We have had the best experiences with very sweet and caring medical staff at Phoebe, the ambulance and here at Egleston. That makes all the difference in the world! We are thanking the Lord tonight for good nurses, EMTs, doctors, medicine and hospitals!

Give Blood

Hannah had another appointment on Monday. It should have been a quick IV appointment, but her blood counts were low enough that she needed a blood transfusion. These take a while, so her "short" appointment turned into another seven hour day at the hospital. 

I have always known that giving blood was a good thing to do. I even used to give it before I got busy with having kids and being a mom (not a good enough excuse). My idea of giving blood changed completely when my daughter needed it. She had to have blood transfusions when she was first diagnosed. I remember lying there beside her in the hospital bed, watching some good-hearted stranger's blood help to save her life. That feeling hit me again Monday. I never realized, before all of this hit close to home, that this simple gift is something we can all do to truly save another person's life. It usually takes less than an hour, barely hurts, costs us nothing, and saves lives! Let's all put giving blood on our permanent list of New Year's resolutions!

Pictures

I didn't get around to posting these pictures from Hannah's appointment last week. She felt good while we were there, so I thought I would take a few pictures of how we pass the time at the hospital. 

Yes, the hospital allows kids to ride these Big Wheels around and around the clinic. Hannah loved it! (Can you tell by her expression?) Eric had to follow closely behind her with her IV pole because she was hooked up to it.

This is one of Hannah's favorite things to do -- ride her IV pole. It actually makes it much easier to get anywhere. Riding on it also helps to keep her from darting away, forgetting that she's attached to it. 

Life Is Not Fair

Hannah's blood counts were too low to go to Rocky (Eric's brother) and Whitney's wedding this past weekend. She was sad to not be able to go, but had a good time with her sweet babysitter. The wedding was beautiful, on a perfect Fall day.

She had a very long appointment on Monday. We got there at 8:00, she had a lumbar puncture then an extra long chemo infusion. We finally got out of the hospital after 4:00. She did well while we were there. She handled things much better, emotionally, this time. We were very thankful for that! The last thing of the day was a new chemo that made her very sick on the way home and for a good while after we got home. I've never known how hard it is for a child to throw up repeatedly while strapped into a car seat. She wasn't able to lean over enough to not get it all over her shirt. I'm sure some more cancer-seasoned moms have good solutions to this.

I was worried that she would be sick like that all the time for the next couple of weeks. We have to give the chemo that makes her sick by shot this week and next. It looks like she will be able to feel good until we have to give her the shot in the afternoons, then be sick for a few hours after that. We are thankful that she hopefully won't be sick around the clock and thankful for Phenergan and Zofran!

When we got up to go to the hospital this time, she was upset about having to go there again. She said, "This isn't fair!" What a young age to have to learn that there are many things in this life that aren't fair. It's not fair that she would be the one who has to have cancer. But it also isn't fair that she gets to have the kind of cancer that is treatable. It's not fair that we have access to life-saving medicines. It's not fair that we live in a time and country where we can drive just a few hours to get excellent medical care. It's not fair that with the same diagnosis, other parents in other places would have to just watch their child die. Yes, life isn't fair. 

Shootin' For Hannah

Jana Sizemore organized a skeet shooting benefit for Hannah, which was held this morning. We would like to say a big thank you to Jana for all of her time and hard work! Also, thank you to everyone who came out to shoot skeet and support Hannah! We have been blown away by people's thoughtfulness and generosity!

(Lauren was so sweet to volunteer to wear a hat too - she wanted to make Hannah feel better about wearing one. She is such a good big sister!)

Hannah's First Haircut

This week Hannah's hair started coming out in handfuls and getting very patchy. We decided it was time to go ahead and cut it. She was pretty upset about the idea of cutting off all of her hair and cried every time we tried to talk to her about it. Tonight we talked to her again and showed her how the hair was falling out. She was a big girl and agreed for us to cut it, if we promised to leave a little bit. She was happy while Eric was cutting it, but cried when she saw it in the mirror. I've been dreading this and have felt sad seeing her hair get thinner and thinner. I now feel relieved that we finally cut it and am glad that it looks better. (It had gotten to where it was still long in some places and bare in others). I know that this should be the least of our worries in dealing with this disease, but it has still been a little sad.

before

after

A Witch on Steroids

Again, I have no pictures of Hannah's appointment on Friday. She is still having a hard time being at the hospital these days. A sweet friend, who had personal experiences of this, told me that it is normal for Hannah to get fed up with everything. A couple of the nurses agreed that kids seem to go through phases when they can handle it better and times when they can't. It helps to know that this is normal and that she will hopefully get to where she can be happier at the hospital again.

Besides her being extra tired, having sore throats, upset stomachs and leg pains, she has handled this new chemo well. We get this week off (which always seems like the best, longest vacation when we don't have to go for a week!) The doctors were able to move her next appointment until after Eric's brother's wedding next weekend. We are very thankful for that and hope that Hannah can feel good for it. The next appointment is when it is supposed to get rough for her. She will have two new chemos that the docs say will make her sick. Please keep praying that she can handle these new chemos well. We have been truly amazed at how well she has done so far -- many answered prayers!

Hannah chose to be a witch for Halloween this year. I thought that was a perfect choice because:
1. Lauren wore this costume two years ago and there's nothing better than hand-me-downs.
2. Hannah is on steroids and so she is easily able to play the part!

This picture is my attempt to capture the essence of our Halloween this year. The witch hat that goes with the costume was thrown across the room moments before she flung herself onto the floor, refusing to pose for the picture.

(Please don't think that I'm cruel to be laughing about all of this - in the title of this post and by taking pictures of her being upset. There has to be some humor in all of this mess! I really think that when this is all over and she gets older, she will laugh about it too.)

No Pictures

I don't have any pictures from Hannah's appointment on Friday. She had an extra hard time being there this week. She even started crying as soon as we stepped off the elevator (she has never been like that). I don't know why she is so upset about her appointments these days. It seems like she had gotten used to them and had been doing well before these last couple of weeks. Maybe she is fed up with this whole deal of having to keep going to the hospital. I wish I could get into her little mind to understand.

On a happier note, she is feeling better this week than she did last week. It is wonderful to see her happy and playing. Her doctors have said that the second half of this phase will be worse than the first. We are thankful that the entire phase isn't too hard on her and are thankful for every good day that she has!

Unpredictable Days

Hannah had another appointment yesterday. She had an IV chemo that was given slowly so it took a long time. Then they wanted to watch her for an hour to make sure she didn't have an allergic reaction to it (which is common with this type of chemo). We were very thankful that her body didn't react to it! We were on the infusion side of the clinic where each patient is separated only by curtains. I felt sorry for the other patients, parents and nurses having to hear Hannah's steroid rage. You can see by her expressions that she is not having a good time.

Kids are truly amazing! Hannah's not feeling well seems to come and go in waves. She will cry and sit in my lap, saying that her stomach hurts. Then twenty minutes later she is up, playing and happy. The same goes with her moodiness due to the steroids. She can be her normal, happy self and then it is like a switch is flipped and she is angry and miserable. I believe that if my body was going through all of this I would probably be in the bed complaining and moody ALL the time! I guess grown-ups know too much. Not understanding everything that is going on must help kids deal with this sort of thing better.

Start of Phase 4

Hannah had an appointment on Thursday for an Echocardiogram. The chemo that she is starting this phase has the potential to damage her heart muscle so she will have an Echo every year from now on to keep an eye on it. She did not enjoy having to lie still for over 30 minutes for this procedure. We (including the tech that did it) were very glad to finish!

The hospital had a Fall Festival on Thursday afternoon in the garden on the hospital grounds. There were crafts, games, music, bubbles and toys. Many of the patients staying in the hospital were brought out and you could tell that they had a great time.

This hospital has the most wonderful volunteers. One of the kids' favorites is the Fairy Godmother. She is so sweet and genuinely loves the children.

An anonymous donor donated 100 tickets to the cancer center at the hospital for the Disney on Ice show at Philips Arena. They offered us tickets and we were thrilled! Lauren's cousin, Ava, and my mom were able to come with us. The girls LOVED it! Here is a picture a few minutes before the show started.

Hannah had a hard time during her appointment on Friday. She had to have another lumbar puncture where they put her to sleep and two chemos through IV. She seemed to be afraid of the sedation process (even though she's had it many times now) and kicked and screamed at everything the nurses and doctors tried to do. The nurses said that it is common for kids not to do well after having a break from coming to the hospital. Since we haven't had to go there for the last two weeks, I guess it all felt a little new again for her.

One of the new chemos for this phase is red in color. I don't understand medically how this happens, but the docs say that while Hannah is on it, it will cause her sweat, tears, saliva and urine to be red. Her docs say that kids think this is interesting.

She also started back on steroids, so here we go again with the never satisfied hunger and terrible mood swings. Her personality changes so much while on steroids that it sometimes feels like we are babysitting someone else's child (who is not at all pleasant to be around). Please pray for patience for us for the next few weeks! We leave again today (Sunday) for another appointment in the morning.

Light the Night

On Thursday we went to the Light the Night walk in Dothan which is a fundraiser for the Leukemia and Lymphoma Society. This was the first year it has been held in Dothan. There was an amazing turnout of over 800 people. It was wonderful to see how many people care about this cause and encouraging to see all of the survivors there. We also had a good turnout for our "Hope for Hannah" team.

A few months ago Hannah was named Honorary Miss Twilight at the Twilight Pageant (which also benefits the Leukemia and Lymphoma Society) in Dothan. I didn't get any pictures that day or I would have posted them on this blog. At the walk they recognized her on stage. You can see from this picture how thrilled she was to be the center of attention. She would have stood up there all night with people taking pictures of her if we had let her!

Thank you, Angie Adams (the director of the walk and pageant), for including us in these events and for all you do in working to raise money to find a cure!

End of Phase 3!

Friday was the last day of Hannah's treatments for Phase 3. These phases seem to be going by quickly. She did well at the long appointment. She received the same types of chemo that she has had this phase, just stronger doses. On the way home she always asks if that was the last time she has to go to the hospital. When we tell her no, that is not the last time, she asks how many more times she will have to go. How do you explain to a three-year-old that it will be another two years?

Hannah's Gam won Braves tickets from her work, so we were able to go to the game on Thursday night. The kids only lasted four innings and were restless and ready to leave, but they did enjoy seeing the field and players.

From our experience, three kids in a queen size hotel bed does not equal a good night's sleep for anyone (including people in the next rooms). So, Hannah was the smallest and got the boot. We wedged two of these big, heavy chairs together between a dresser and table so that they wouldn't slide apart during the night and they made the perfect bed for her!

The next phase will start at the end of next week and will probably be the worst for Hannah. She will have seven different kinds of chemo over the course of the phase and will start steroids again. Please pray that her body will handle this next phase well and that she will continue to feel good! Her doctors say that during this phase is when most kids lose their hair, feel the sickest and have to be admitted into the hospital because of complications (fever, etc). The good news is that as long as there are no delays, due to low blood counts, she should be done with this phase a week or so before Christmas. Hopefully that will be enough time for her to feel good for the holidays.

Hannah's Prayer

As I tucked Hannah into bed tonight, I said, "Let's say our prayers." She said, "Me first. God, please help me to get better and please help me not have to go to the hospital anymore. Amen."

Difficulties in Life

"'Do not quarrel with your lot in life. Do not complain of its never-ceasing cares, it's petty environment, the vexations you have to stand... That is the practice, which God appoints you; and it is having its work in making you patient, and humble, and generous, and unselfish, and kind, and courteous. Do not grudge the hand that is still moulding the still too shapeless image within you.' Here's the difference: trying aspects of life will happen whether we use them or not. Spiritual laziness leads to resentment; spiritual diligence spawns insight and transformation from the exact same events. Let us become intentional to use personal slights, inconveniences, acts of gossip and slander, times of difficulty, and even sickness as opportunities to grow in patience and understanding and humility instead of bitterly resenting each one.'"
              --Drummond/Gary Thomas (in the book, Every Body Matters)

Wow. This is how I want to feel about what we are going through with Hannah. I know the truth in this quote. I believe God can get me to a place where I actually feel this truth and can apply it to my life. I'm just not there yet. The struggle and hurt in my heart is definitely not just for what we are going through with Hannah. It is for all of the families we have met and heard about who are going through much worse things than we are. It is mostly for the families who have had their children taken from them after long and painful fights with this disease. We feel like we have been admitted into a club in which no one would choose to be a member.
     
Sometimes I feel like calling out to God as Ann Voskamp does in her book, One Thousand Gifts, "No, God. We won't take what You give. No, God. Your plans are a gutted, bleeding mess and I didn't sign up for this and You really thought I'd go for this? No, God. This is ugly and this is a mess and can't You get anything right and just haul all this pain out of here and I'll take it from here, thanks. And God? Thanks for nothing." It seems so wrong to admit that I sometimes feel this way. 

I went to an amazing counselor this past week who spoke to me about bringing my full complaint to God. She said it is the lie of the enemy that tells us we have to be good enough and have to have our attitudes straightened out before we can talk to God about the way we feel. She gave me examples from the Bible where the Israelites, Job, Habakkuk and the author of Psalm 77 cried out to God. After each honest complaining session, God came to be with these people of the Bible and as a result they knew God more than they did before experiencing difficult times.

Please pray for us that we will choose to face this season of our life with spiritual diligence and not bitter resentment. Please pray that patience, understanding, and humility will be the result in our lives and that God will reveal Himself like never before.

A Good Day

Hannah had her next-to-last appointment for this phase today. She had chemo inserted into her spinal cord fluid and two other kinds of chemo through IV. The above picture was when she was waking up from her sedation. Her only request was plain Lays potato chips, which have been one of her favorite foods since starting this whole process. She isn't eating much at all anymore and these potato chips were about all she ate today. Yes, this seems very unhealthy but her docs say that any calories we can get into her are good right now. We'll worry about eating healthy foods later.

Hannah finally decided that she would pose for a picture with her all time favorite nurse "Miss" Lilly (we've tried a picture with her before and Hannah refused to look or smile). Hannah truly looks forward to seeing her and has even told her, "You know I love you, Miss Lilly". We are so thankful to get to have amazing nurses and doctors take care of Hannah. I can't imagine what this journey would be like without them!

This is in front of the hospital on our way out. 

Eric and I feel like we are becoming experts on the ride to and from Atlanta. We are learning exactly what restaurants/gas stations are at which exits - which ones are clean and which ones to avoid. We pretty much know exactly how long it will take us to arrive from any point on the trip. We have figured out different ways to get to and from the hospital according to the time of day and traffic. And we have definitely learned which one of us needs to drive and which one needs to navigate :)

Benefits

(I meant to post about this earlier, but this week has been a little crazy with Eric's injury and everything.)

Last Saturday there were two benefits for Hannah. One in Donalsonville given by Ben and Brandy Spooner and one in Arlington given by Michael and Melissa Connor. We want to say a very special thank you to both of these couples. We are overwhelmed with gratitude for all of the time and work that was put into them. Both benefits had great turnouts. We know that there are many people who helped that we don't know about -- a big thank you to everyone involved. There are wonderful benefits of living in a small town surrounded by people who love and support others in their community. It has blessed us SO much to know that people are praying for us and willing to attend a benefit to support us!  

Thank you!!

Really, God?

On Sunday Eric was thrown from a mule wagon, landed on an asphalt driveway and broke his clavicle where it meets his sternum. Our house is starting to feel like a medical clinic. I'm joking about the title of this blog -- we are really thankful nothing worse happened and that none of the kids were on the wagon at the time. With how and where he fell, a broken bone is the best possible outcome and we are so grateful that he wasn't hurt in any other ways. He was told by the orthopedist to not use his arm for the next four weeks. This is terrible timing for him, as hunting season just started!


Hannah had a good appointment on Friday. She is getting to where she looks forward to seeing her favorite nurses each week. Here she is with her regular chemo nurse, Anne.

And this is Layne, her child-life specialist. She is helping Hannah to be more comfortable when they access her port. It still seems to scare her some. It doesn't hurt her because we put EMLA cream on which numbs it, but I think she still doesn't like to see a needle coming at her.

Wedding

We got permission from Hannah's doctors to go to my cousin Ashley's wedding in North Carolina this past weekend. It was the most special, thoughtful wedding I've ever attended. It was wonderful to get to spend the weekend with our extended family and share in Ashley's special day!

We broke up the drive halfway by spending the night in Savannah. We spent the morning on a very quick tour of the city by horse and carriage.

The humidity must have fogged up the camera lens, but this next picture is a great example of Hannah's extreme grouchiness which occurs often these days.

Aunt Susie made all of the flower girls' dresses. She did an amazing job!

This was our table at the rehearsal dinner. It makes for a very interesting dinner when the children way outnumber the grown-ups at the table!

Hannah and the other older girl cousins were flower girls. They were adorable!

On the way home, we spent the night in Atlanta because Hannah had her appointment the next morning. We saw a different doctor in her group of Leukemia doctors. He was great. We have had such a positive experience with the staff at Egleston! Her blood counts were a little lower this week, but adequate enough for them to increase her dose of chemo. They will continue to increase the dose each appointment during this phase as long as her body can handle it. She has done well with it this week and has felt good. Here, she is playing with paper dolls, waiting on the doctor to come.

In other family news, Evan lost another tooth. I'm not sure what the Tooth Fairy's problem is, but she seems to forget to stop by our house a lot! It has actually happened so much that Evan woke up the next morning and said, "The Tooth Fairy forgot to come again!" Last time she messed up and Evan had to find his money on the kitchen counter. I don't know what is going on with her that she can't do her job, but she needs to do better!

Dr. Hannah

Hannah's new favorite thing to play is doctor. Yesterday, her sweet nurse, "Miss" Anne, sent her home with all kinds of real doctor supplies. Hannah always insists that Evan and Lauren be the patients. (Lauren is the little actress, playing like she is sick. Evan is not quite in character.)

Somehow the girls talked Evan into moving to the "operating room" and being the sole patient. You can see his uncertainty about this on his face.

Phase 3

Hannah started the third phase of her treatment today. In this phase she will have three kinds of chemo and will go for appointments every ten days. This phase will last about two months. She had a long, but good appointment today.

As one of her doctors was leaving our room he mentioned that he was on his way to tell a family that their child had relapsed. I cannot imagine going through years of treatment, think that it is all behind you and then have to go through it all over again. I don't know this family's name, but please take a few minutes to pray for them. Our family is so blessed to have such wonderful prayer support, but not everyone has this. I can't stop thinking about them and how they must be feeling today.

When we first found out about Hannah having Leukemia and for about the first six weeks following that, I felt angry at and betrayed by God. I had prayed for my children to be healthy. I had prayed that He would keep them safe. I felt like all of those prayers had been shattered in an instant. I couldn't pray to Him during that time. I felt like it was a waste of my time to pray when He was going to do whatever He wanted, regardless of my prayers. Slowly, I began to come around. My wise sister, Maria, told me to remember what I know about God and who He is, even if I don't feel it at the time. Reading the book, Holding on to Hope by Nancy Guthrie helped tremendously. I am certain that all of the prayers from our loved ones who prayed when I couldn't helped the most. I had to come to a place where, as Nancy Guthrie says in her book, "Well, I guess here is where the rubber meets the road. Here is where I find out if I really believe what I say I believe." I have come to understand that if God is who I believe He is and who He says He is, then I can trust Him. I can trust Him to do whatever He sees fit to do. I can trust Him to bring whatever He wants into our lives. He knows what is best for my life and for my family's life (and I don't!!!) An amazing peace has washed over me as a result of placing my trust in Him through all of this. I have a long way to go and a lot more to learn in this journey. It is still not easy. It still hurts. I still have days where I don't want to get out of bed and when I can't stop crying. But I know He is sovereign and good and loving. And I know that I can trust Him with everything, even this.

ER Trip

We have had a couple of frustrating days. On Wednesday, a mosquito bite on Hannah's cheek looked infected and had red streaks coming from it. Her doctor said that it could be a staph infection and that since it was on her face we should come on to the emergency room at Egleston. By the time we got up there it was late and we were all tired. It ended up taking six hours for them to do a CBC test (a simple blood test that should have taken five minutes). Part of the problem was that they had a new nurse access Hannah's port. She didn't do it right - they couldn't draw blood from it and it was hurting Hannah so something was wrong with it. They had to take it out and re-do it. This all happened around 3:00 a.m., so Hannah was good and grouchy by then. She got so upset that they gave her some Versed to calm her down. Anyone who knows Hannah knows that she is a very spirited and lively child with a great sense of humor. (She acts just like her Daddy!) She had all of the nurses and us cracking up at the way she was acting on the Versed. She was hillarious and eating up all of the attention. But then the Versed wore off and there was no more funny, entertaining Hannah. By the time we were admitted to a room it was 6:30 a.m. and none of us had slept for the entire night. Needless to say Hannah was not very happy about this whole experience!

First thing in the morning on Thursday the doctors decided that she was fine and would be discharged. We thought we would probably get out around lunch time. Yes, we are still inexperienced in the ways of hospitals. We didn't get out of there until 5:00. Then we had to spend the night and be back this morning for her chemo treatment because they couldn't work it in to do it while she was admitted.

She did really well considering the long hours we had to wait and sit in small, confined rooms. She is getting more and more comfortable going to the hospital and with the things they do to her there. She loves her regular nurses and has fun with them each week. She had the last treatment of her second phase today and we even get the week off next week! She is still on oral chemo, but this should truly be a break for her.

A Good Week

Hannah has had a great week! She has felt so much better this week - she has been laughing and playing and happy. We are so excited to have our Hannah back! The doctors have told us that this month should be a break for her and she will have a chance to feel much better for the next few weeks. (After this phase it will be more intense with the worst time being this Fall.) She felt so good this week that we decided to do something fun while we were in Atlanta so that she wouldn't dread the trips so much. We went to the zoo and she loved it! Her favorite animals were the warthogs (who would have guessed?)

She did really well at her appointment yesterday. Until yesterday, she had been getting really upset when it was time to go back for her appointment by crying that she didn't want to go see the doctors, that she didn't want a finger prick, and that she didn't want them to access her port (attach the IV). With her feeling better, we tried to talk to her a lot this past week about being brave for her appointments. For the first time yesterday she didn't even cry when she was called back for the appointment or when they pricked her finger for her blood tests. She was so proud of herself for being able to do it and for being brave!

Her doctor also said that her blood counts are up and pretty good for now, so she was able to go to the golf tournament that was in her honor today. I was amazed at how great she felt and how long she lasted in feeling good! That was definitely the best she has felt in so many weeks!! It has been hard for me to let her out of the house. Before the zoo the other day and the tournament today, she had not been in public since she was diagnosed. I can't help but to worry about her getting sick and something happening. The doctors say that when her blood counts are good we should do what we can to let her have fun and be a normal little girl. I'm trying to remember that and trying to let go of being worried. I'm hoping it will get easier as we get more used to all of this.

It was wonderful to see everyone at the tournament. Eric and I are thankful beyond words for everyone coming out to play golf for her and especially for everyone who worked so hard to get the tournament together (especially in the heat today!) We will never be able to say thank you enough to our wonderful friends and family! It means more to us than we will ever be able to express!

To clarify...

I didn't go into much detail on this blog and there has been some confusion about what the test results meant.I've had several people ask me if Hannah was completely out of the woods because she had good test results. No, that is not true. The bone marrow biopsy showed that there were no immature white bood cells in her bone marrow which would have put her in a high risk category. She will remain at standard risk and continue to have chemotherapy treatments for the next 2 1/2 years. She will continue on the path of treatment that the doctors first prescribed. The doctors fully expected that the test results would come back the way they did. It is very rare that kids have the results come back the other way. Nothing has changed as a result of the good test results, her treatment would have just been much more intense if the test had not come back good.

Good Test Results!

Hannah's bone marrow biopsy test came back good!! We are so relieved and thankful to receive such great news today!

She had a good appointment today. She had to have another lumbar puncture to insert the chemo into her spinal fluid and get chemo through an IV. She can't eat before being sedated. Her appointment was at 11:00, but the clinic was backed up and she ended up having to wait until 2:30 to finally eat. Thankfully she isn't quite as hungry since being off of the steroids, but it still made for a pretty grumpy little girl!

The hospital has so many wonderful people working and volunteering there. Some of Hannah's favorites are the clowns. They stopped by her room and then saw her again when we were waiting in the waiting room for the second time today. They made her laugh like I haven't heard her laugh in over a month! It was wonderful!

No Test Results Back Yet

We still haven't gotten the test results back yet. Hopefully we will hear something tomorrow or at the latest on Friday at her appointment.

Ronald McDonald House

Hannah did great this morning. We are home and so glad today is over! We are officially done with the Induction Therapy phase and Hannah doesn't have to take steroids again for a couple of months. We should get the test results from the bone marrow biopsy back Tuesday or Wednesday.

When we have to spend the night for early morning appointments, we have gotten to stay at the Ronald McDonald House which is very close to the hospital. This picture is only half of the building. It is staffed by almost all volunteers. Different companies, restaurants and groups donate and serve breakfast and dinner almost every day. It is a very special place - especially for families who have to stay there for long periods of time. The atmosphere there is like no other place we've been. All of the families are so friendly and there is an immediately felt common bond. We are thankful to have such a great place to stay!