Make-A-Wish

A few months after Hannah was diagnosed we were going through the mountains of paperwork with our social worker. One of the forms she handed us was from the Make-A-Wish foundation. We looked up at her, shocked and a little afraid. She smiled, obviously accustomed to this response, and said that your child doesn't have to be dying to be eligible for a wish from the foundation. A life-threatening disease like cancer qualifies them. We never knew this, but were thrilled. We were able to meet with the two volunteers assigned to us this week while we were at the hospital for Hannah's appointment.

You can see from this picture how my kids instantly fell in love with these two amazing women. Did you catch the word volunteers? These ladies have careers and families (at least one of them has small children - I didn't get a chance to ask the other) and they have given countless hours to volunteering for organizations like Make-A-Wish. They both had taken off of work to meet with us. This experience of meeting them was very convicting to me! I have used the excuse that I have small children and I am therefore too busy to volunteer for things right now - maybe later in my life. What a great example this is to me to live my life differently and more meaningfully!

We were able to spend more time chatting with Holly, the volunteer on the right. I asked her why she volunteers for the THREE different organizations to which she donates her time. I half expected her to say that she had a sibling who battled cancer or something like that. Her answer was that she grew up in Memphis and her parents were always good about taking her to visit the patients at St. Jude Children's Hospital. It made an impression on her and now she continues to give back with her time. Wow! What influence there is when we teach our children through our actions and not just our words! Her parents included her in their volunteering/giving and now she is carrying it on in her life and the next generation with her own children. Because of her parent's actions, she is continuing to make a difference in many children's lives - including my kids! This was definitely a lesson in parenting for me.   I want to be intentional to involve my children in service to others and giving of our time.

Thank you Meredith and Holly (and Holly's parents)!

January

Hannah had her January appointment on Thursday. Since we had to be at the hospital rather early, we went up the night before. Evan and Lauren came with us on this trip. Isn't it wonderful how a stay in a hotel is the best thing ever for kids? Their favorite thing is to jump from bed to bed. (Sorry everyone else who is trying to sleep!)

This time Evan volunteered to sleep in the chair instead of in the bed with both his sisters. Surprisingly, the next morning he said he slept well.

Hannah's appointment was long but routine. She got her monthly IV chemo and blood work done. Earlier in the week when I told her we had to go back, this was the conversation we had:

Me: We have to go back for another appointment.

Hannah: Spend the night in the hospital?

Me: No.

Hannah: Finger prick?

Me: Yes.

Hannah: Port? (She was asking if they would have to access her port)

Me: Yes.

Hannah: Sleepy medicine? (She was asking if she would have to be sedated, which she doesn't like)

Me: No.

Hannah: OK

The understanding she has about all these procedures is amazing. In just a few short questions she had the whole doctor visit understood in her mind. 

I remember a couple of years ago thinking that I wanted to expose my children to other children who may have disabilities or were different in some ways. I wanted them to learn that children who may look or move differently were still just kids who wanted to be treated the same. I wasn't sure where or how to do that. As we walked into the very full waiting room this week, it hit me that this has been taken care of. A quick scan of the room showed children of every race and background, many with no hair, many who looked very sick, one with large scars all over his bald head, and a couple in wheelchairs. All three of my children didn't stare or ask questions about what was wrong with these kids. This is normal to us now. I looked over at one point and my kids were talking and playing with a little boy (a little older than Hannah) who obviously had cancer and had a prosthetic leg. He was showing them how he could take it off and how he could balance on his other leg. He and Hannah were showing each other how long they could stand on one foot. I love this! It brings tears to my eyes just thinking about it. What a blessing for my children (and me!) 

Hannah will continue on her oral chemo this month and return next month for the same type of visit. It is nice to have things be the same every month. She is on steroids again this week. I explained this to Evan and Lauren and gave them the talk about how this means that we all have to be extra patient, etc. They both asked if they could have a vacation from Hannah. :)

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!