I don't know what the future holds for us at this point, but I guess nobody does. I wish on Ella's last day of chemo I was able to go "Wow, we are done!", but truth be told I did not. All I could do was wonder what the chances are that she will have to go through this again. I think with something that you spend years going through, you have to spend at least that much time to feel free of it. I know this is hard to understand. I have mentioned it to a few people and they could only say 'But your done!". But, really we are not "Done". There are scars left on this family that will never go away. Scars on Ella's body that will fade, but never fully disappear. Friendships lost, that will never fully return. Experiences that were missed out on and replaced with ones that nobody wants their 4 year old to go through. This is not limited to cancer, but anyone with a disease that threatens their life, or their child's life.
I know that God willing, Ella will not remember most of this journey, but it is forever ingrained in my memory and her fathers. I pray that she will never have to go through any of this again. I pray that there will be more research into Childhood Cancer because I do not want to meet another parent that has just learned their child has an uncertain future. I pray that all these memories will fade and be replaced by new and better ones. The one phrase that still sticks in my mind after these 2+ years is one nurse Gail said to me the first day I met her. "No dreams should be lost for this child.". They were never lost, but they have been replaced by different ones. Ones of health and happiness. For a childhood filled with laughter and no more needles. For her memories of this journey to only be of the wonderful people she met and how strong she really is.
I have one final video of Ella journey. This one goes to what I hope, is the end of her cancer battle. It was so hard to pick images for only 3 minutes, and I chose the ones that might not be the ones I like the best, but that tell her story. As always, feel free to share this video. Anything that helps to raise awareness is appreciated.
For those that have followed us on this journey, we Thank You. Thank you for just being there for us and listening an praying.
Blessings~Katie, Steve, Josh & Ella.
Family shot. Doesn't everyone look better in a wet suit?
Well, Ella got her Wish. She wished for a Disney cruise and to swim with the dolphins, and that is what she did! She was so brave with the dolphin. She went up by herself, hugged and kissed the dolphin, and then fed it cold slimy fish, and she loved every minute of it.
They loved that our room had bunk beds and a balcony. Josh was super adventurous and tried lots of new foods. Ella said her favorite thing was the Aqua-Duck waterside on the ship.
The first night we got there, we explored the boat, but the Ella fell asleep before dinner and Josh soon after because the woke up at 2am to catch the flight. Plus Josh was still recovering from pneumonia. The second day we did the Dolphin Adventure and the third was a day at Disney's Island. This was fun and relaxing. The kids got a kick out of the swinging hammocks and built a boat out of sand with dad. The forth day we were at sea and even though the air was chilly, the pools were warm. in the afternoon we escaped inside and caught a movie with the kids in the beautiful theater on-board the ship. Overall, the kids had a wonderful time!
The cruise ship in sand.
After we finished the cruise, we headed to Disney for 4 more days with grandma and grandpa. I don't know for sure who smiled more? Grandma and Grandpa or Ella and Josh! We hit 4 parks and the pool. The lines were nonresistant and the even opened the new Fantasy Land Park early, so we got to go on all those rides too. Ella was a thrill seeker and went on the Tower of Terror with Josh and dad, but she knows her limits and opted out of the 2nd ride. Her favorite ride was Sorring that she and Grandma went on together 3 times! They were two very happy girls.
I hope this ends our adventure in Leukemia/cancer land. From now on Ella will have monthly check-ups and Steve and I will continue to count our blessings and know that we are the lucky ones in all of this. Cancer did not beat us. It did not kill my child, it did not destroy my family. We win.
We are very grateful to Make A Wish for making Ella's dream come true. I have a million pictures and it was really hard to choose which ones to post. I leave you with one more of Ella and Josh.
Blessings, and gratitude for every comment and prayer from all of you in Blogger Land. Thank you.
I PROMISE to post Ella's Make A Wish adventure soon, but I wanted to share this video with you. it is meant to help make our government more aware that research is needed for Childhood Cancers. If it is too hard for you to watch, just imagine living it. If you cant make it through, please post it on your Facebook or other Social Media to help raise awareness. You can also go to their website and sign their petition.
I feel like I need clarity. Like I can't just catch a breath. The past month has flown by and in the blink of an eye- Ella is one month off treatment. So I'll just write it out here and get the clarity I need.
The past 30 days have been crazy.
Ella, with a few days left in treatment, was admitted to the hospital with a fever. A few days before Ella finished chemo we put our dog down, because she had cancer in her rear leg. Then Ella completed her last chemo and we celebrated "No More Chemo" with our fantastic support system. A few days later I was off to Haiti on a missions trip, where I would see first hand the things I've only heard about. Those pictures you see on TV where they ask for money and support- they are all truth. Now I have taken those pictures myself and yearn for a way to make a difference. When I came home my son was 2 days into a fever that would last 10. Ella had her port removed and today Josh was finally diagnosed with strep and phenomena in both lungs after 3 doctors visits.
A friend asked me the other day why it seemed like our family couldn't catch a break. I laughed it off, because so many wonderful things have happened in these busy 30 days. My Beautiful Daughter kicked cancers butt! I was lucky enough to enjoy the companionship of a loving and faithful dog for over 10 years and come to a full realization of how much love she actually gave our family. We got to hear Ella laugh from her belly as she celebrated with her friends. I had the rare opportunity to serve and learn and grow from the example of other adults and children who taught me a little more about how our God loves us. I also got to meet the child our family sponsors and hug her and kiss her and tell her she is loved. And because Josh has been sick, I have been able to give him my full attention, coddle him and give him the time that I wasn't always able to give him over the past 2 1/2 years because so much needed to be centered around Ella.
So, in this crazy 30 days I guess I've kept it together- well, most the time. I've cried, I've laughed and I've grown because of all of these experiences we have had. I always find myself praying that God will use me for his will. Somehow, I feel like he has in the past 30 days.
I wish I had a recording of this, but can I just share with you all how awesome it has been to just watch Ella over the past 30 days! She seems happy all the time. She has been dancing more and singing more and just coming out with these crazy little sayings that she cracks herself up with. This is the child that I have missed over the 794 days of treatment she had and I am so excited to see how she continues to change!
Tuesday she will have her first non-treatment check-up to see how her body is recovering.
Today Ella had the port removed from the left side of her chest!
We arrived promptly at 9:30 am at the hospital for surgery, than sat there until noon. So frustrating. Ella had not eaten and she kept saying "This is the worst day ever!" I sent a message to our child life specialist Megan for back-up. Ella had run through all the things we brought to keep her occupied so it was Megan to the rescue. She came into the Pre-Op area and talked with us while Ella played her new game. Ella started getting scared and nervous and didn't want to take the medicine that helped her relax. Then Megan started playing I Spy with her and she even sat in the bed and rolled into the operating room with Ella because I wasn't allowed to go back that far.
Megan and Ella playing I Spy and rolling down the hall
The anesthesiologist swore she would not remember that I wasn't there, but wouldn't you know it, as soon as she got out she started hitting me in the butt and yelling that I wasn't there with her. She is too smart for those drugs. She cried and was very upset for 45 minutes after she came out of surgery. It took 4 grape popsicles to calm her down, and then she had to take more medicine which upset her again. Eventually we calmed her down, changed her into her new Brave nightgown and left for home.
Ella and Daddy Pre-Surgery
A couple people have asked us if we are glad that it's "over". Having the port removed was definitely a milestone, but Steve and I both agree that this doesn't feel like it is "over" yet. Not because we think she will get cancer again, but because it will still play a roll in our lives for sometime still. We are in a couples group and we are reading a book on living without Fear (Fearless by Max Lucado). It is very timely for us right now. We still have 5 years of clinic visits and blood test results to get through before Ella is officially cured. For us, it just doesn't feel that "over" yet.
In about 2 week, Ella will have the opportunity to go on a Disney Cruise. It is with much gratitude that the Make A Wish foundation is giving our family this opportunity to spend together and re-bond. I think it will also give us our first taste of "Normal" in over two years. I am really looking forward to the 4 of us being able to just be together as a family and laughing and enjoying each others company. My baby gets to go swimming, and I don't have to worry about the water. I can buy fresh flowers, and have them in my home again. I can learn to let her have a cold and wait for her body, her amazing body, to just heal itself.
Tomorrow Ella will have surgery to remove the port in her chest that delivered chemo into her blood stream. This was implanted into her chest right after she was diagnosed. She is so excited to have it removed, but also a little nervous. Tonight she said she was mad. I asked her why. She said that she didn't want to wear the "boy dresses" that they gave her for surgery. She said "They are my ENEMY!!!". So funny to me that her biggest concern is that she might have to wear a hospital gown that is not girly enough for her!
Ella after port was inserted
Looking forward to being one step closer to done.
P.S. if your looking for more on my trip to Haiti last week, you can find it at :Haiti
Our team made it safely to Haiti on Saturday!
Our flight out of O'Hare had technical "difficulties", and we were deplaned and put on another plane a few hours later. This only gave u a few hours till our next plane, so instead of going to a hotel we spent the night in the airport. This actually turned out to be a blessing. The hotel refunded all of our money and it made up the difference for the amount of money we were short from shopping for supplies for SonLight!
On Saturday we took a tour of the beautiful new Son Center. This worship center was built by volunteers and is an incredible facility were the Haitians gather to learn about God on Sundays. After our tour we went back to our rooms to get settled and wash up. We enjoyed a meal and worship time on the roof of the school.
On Sunday, we had the opportunity to attend Sunday School and go to service in creole. Then we learned our assignments for the week and went for a hike through the city of Port De Paix. I wish I had enough time to give you all the details of that journey. All I can say is that every picture you have seen on TV that every picture that you see on TV that pull on your heart strings is true. there were pigs and dogs roaming the streets looking for food and water. Kids had no pants and ran around in their underware. Garbage is everywhere. There are no police roaming the street to keep you safe. Kids come to school with no food to eat. It makes you wish you could do more, whatever it is- just more.
Bus we took to the small airport to get to Port DePaix
Small airplane to Port DePaix
Sleeping at the airport
Tonight we will be worshiping together and preparing our hearts for serving tomorrow.
Hotel where we are staying- Holiday Hotel
Please continue to pray for our safety and that our hearts will be willing and open to hearing what he needs us to do why we are here.
Here are some pictures from Ella's party on her last day of chemo. She had a great time playing with her friends. Our neighbors TP'd our house and put sign's in our yard. The limo picked up her and her friends for a glow in the dark dance party that she will never forget. I am also including a pic of her taking her last dose of chemo!!!!!
I love how she is looking at herself in this one, so I am posting it first!
On Tuesday she had her last Bone Marrow Aspiration. This will tell us if there is any residual cancer left in her marrow. I know there is a lot of excitement over her last day of chemo and Ella ending this journey, but for Steve and I we feel like it isn't over. I would love to say that it will be over when we get this test back, but for us it won't be. We will forever be left wondering if every cold or ache is the cancer re-attacking her body. The further away this day is and the closer we get to her 5 year date when the consider her "cured", maybe we will begin to slowly feel different. For now I can say for Ella- she is happy not to have to take medicine EVERY night and be limited on how late she can eat at night. She is happy that she will be able to swim and do other things that cancer use to limit for her. We are so glad that kids have this great ability to live in the day, and for Ella it is a cancer free day. For that I am grateful.
No More Chemo/Cancer Cupcakes
I will post her results as soon as I can. I am leaving on a mission trip to Haiti on Friday. I am very excited to have the ability to go on this journey. I am not under the illusion that I will be going to make a huge difference in the lives of the Haitians I encounter. I am sure this journey will make a bigger difference on who I am as a person and how I see the world. I will be photographing and blogging about this journey for our team at West Ridge Haiti Mission 2012 . Feel free to follow us on this journey from November 2-10th.
I am so grateful for every person that has read and followed us on Ella's Leukemia journey. Saying Thank You will never be enough.
Today is the last day of chemotherapy for Ella. Even though this is her last day of chemo this is not the end of her journey, it is the beginning. This experience will help to shape and mold her into an incredible person and I can not wait to see what a child with this kind of strength, courage and heart will do to make a difference in this world.
Steve and I attend a couples group. The group of people makes up part of our wonderful support system. We are an "unofficial" group- not through our church because we wanted to have a social aspect to our group. Translation...we like to drink alcoholic beverages and eat while we converse about God. I favor the Red Wine, but I don't judge those who prefer beer :-) Okay, inside joke with my hubby who just started drinking beer.
Anyway, I didn't feel up to going tonight. It has been a rough week here at the Van Gheem's. With only a few days left of chemo, Ella spiked a fever that got to 103.3 at 12:30am on Wednesday morning. The Dr. sent her right to admitting to get checked into the hospital. Do not pass GO and do not collect $200 dollars!
So Ella and I went to Loyola while Steve stayed home with Josh. By 3:30am they had pulled her counts and given her Tylenol to break her fever. We cuddled in the little twin bed and got some sleep. Turns out she tested positive for the common cold. The good thing was that her counts were high enough so we were released Wednesday night and sleeping in our own beds that night. By that time her fever was gone and she was bouncing around like she was never sick. The only bad thing is that this is when I realized, I was sick.
There was a positive thing about Ella being admitted. I spent some time with Dr.M, Ella's other oncologist. When she was diagnosed and then a month later determined a Rapid Responder with good Citogenetics, we were told her recover rate without relapse went from 87 to 92%. These are great numbers for any illness, but things change and since her diagnoses over 2 years ago, those numbers have now grown to 95%. What Steve and I did not realize is that that INCLUDES Ella! I thought that only the kids on the newest protocol have that 95% w/o relapse. When he told me I started to cry. He was like "Oh, you knew that!". And I believe I said something like "Does it look, sob sob, like I knew that?" Anyway- Happy Tears to think there is even a 3% less chance of the nasty relapse word. He also yelled at me for speaking that word. Then he told me God is good, which He is. Only 3 days of Chemo left!
So, now I am trying to get healthy and keep Ella healthy so she can PARTY and CELEBRATE on Sunday! Her biggest concern about being admitted was having to cancel her party with her friends. She found out about the limo, but it was a hard secret to keep. Plus seeing how excited about it she is, makes it all okay.
Thursday morning Kailee, our dog, started barking at us. Kind of a crying bark. Then at about 3pm she went upstairs, laid in her bed, and didn't come back down. She just laid there with her leg way up close to her body. Steve and I made the decision to put her down today. We took Josh out of school so he could say goodbye, then Steve and I took her in. The kids cried, we cried. It was a really rough day. Even when we were in the vets office Kailee was wagging her tail and I couldn't help but think "Maybe she isn't ready yet?", "Are we making the right decision?". Steve's response was this- that we were blessed. Blessed to have Kailee as part of our lives and blessed with the burden of having to make this decision. There is a hole in my heart that will shrink over time, but still a hole nonetheless. She's family, and I was blessed to have her as part of my life for the past 10 years. Love you Kailee Girl.
Please forgive the lateness of this post. I have been writing it for days, but this one was tough. I kept re-reading what I was writing and it just made me cry. So, I took a few days to help put some distance between this day and writing. Thanks for your patience everyone!
She did it. She had her last chemo at clinic this past Tuesday. We woke up to a decorated van and drove that thing loaded with people to Ella's last clinic with chemo. We all wore our "Kick Cancer's Butt" bracelets and took this picture before Ella went into clinic. Josh even asked to come so he could celebrate too. It was girls only for the back room where she got accessed. She kept saying all morning "Liddy Grumpy!" She calls herself Liddy, which somehow stemmed from Little Ella to just Liddy, and she was mad because she couldn't eat. She had her final spinal chemo today, and while she was recovering from that she had her final Vincristine drip into her port.
Getting Ready for the Spinal Chemo#1
Everyone was really happy for her and when she was all done the nurses gave a grumpy Ella a big hug.
Ella's Nurse hug- Ella, Annette, Sue and Megan in the back.
I love these 3 ladies, but one of them was missing and she is Ella's favorite nurse- Mrs. Theresa. This was the first nurse to access Ella so she became the one Ella always requested. When we first met Theresa, it was our first day of clinic. It was a Friday and Ella and I were the only patients. I spent some time talking with Theresa and getting some perspective of what this journey was like from a more experienced prospective. Through the knowledgeable eyes of someone who has walked this journey and seen the joy and the pain.
Mrs. Annette, she has this laugh that you can hear all through the back clinic room. This is the room where the chemo is dispersed. Listening to her and the other nurses laugh at the little things makes you forget why you are there. She always calls Ella "Princess Ella!"
Mrs. Sue. She has such a heart. When I first met her, I overheard her talking to another patient about his game that she went to see. I think it was hockey. The cool part was that she went on her own personal time to take part in this child's life. I'm grateful for the skill and care they have taken with my daughter over the past 794 days.
Build A Bear
So we are done with clinic chemo and days away from finishing chemo at home. Now what? I knew how to be the mom of 2 happy kids. Then, I learned how to be the mom of a cancer kid. Now, I have to figure out how to be the mom of a kid who had cancer and pray that I never have to learn to be the mom of the kid who has cancer again. There are so many unknowns about the next 5 years. Ella will continue to go to clinic monthly for now to make sure she hasn't relapsed. The next 2 years hold the biggest percentage of chance she will relapse, but they monitor her for the next 5. I think 5 years is the magic number for most cancer patients. Steve and I spent most of Tuesday night with a glass of wine and lots of tears (okay I was the teary one!) trying to wrap our brains around what the next year will look like for us.
I don't know what kind of mom I will need to be, but I do know that I will be the best mom that I know how to be. I will do my best to learn from others that are a shining example of love to their kids. I will apologize when I make a mistake and ask their forgiveness. I will remember that I am their mother and not their friend and sometimes that isn't fun. I will remember to share God's love with them. I will remember that everyday they are watching how I treat my family, friends and strangers and learning from my actions. I will remember to tell them they are strong, beautiful and worthy of great love. I will remember that I can't control their lives, but only lovingly guide them towards a positive direction. When I feel like I've lost control and can't do this, I will try to remember that God made me Josh and Ella's mom for a reason, and he doesn't make mistakes. I couldn't be prouder of Ella and Josh and the love they have for each other and the strength of our entire family through this journey.
My cup runneth over.
I will post pics of Ella's last day of chemo party next week. I'm sure I'll be crying through that post too, so bear with me!
For Steve and I, our first "baby" was our Chocolate Lab Kailee. We had just purchased our first house in June of 2002, we were about to get married and we wanted to get a dog. The problem was I wanted a big dog, and Steve wanted a small dog. We went back and forth for months. Neither of us wanting to cave in on our stance, and also neither of us were good at making decisions that required the other to not be completely happy.
A co-worker and I had been in training together in Ohio when his first litter of labs was born. His wife email him pictures as the litter was born, and we spent a good hour stealing looks at the photos and waiting anxiously for the next one to come. I really started pushing for a lab after that trip, but no decisions were made. Then in late June, I got a call from a co-worker in Iowa. One of the puppies that had been paid for was not picked up. Only one half of the couple wanted a big dog, and they could not come to an agreement. He asked if we would like the puppy as a wedding gift. Well, a free big dog, was better that a little dog that we have to pay for, so we took the beautiful little brown gift!
We picked up Kailee on the 4th of July. Steve still was a little leery about the size of a lab. We met with my co-worker and his family at my office. When we got there they were outside playing with the puppy. We came prepared with our new collar and leash, said thank you for the beautiful gift and got in the car. I had Steve in the back seat with the puppy and I drove. Within 5 minutes and that little Chocolate Labrador was sound asleep in a ball on Steve's lap. I can still recall the smile on his face when I looked in the rear view mirror. I knew that smile well, he was in love.
She is a car dog. She has been on several road trips to Florida, camping trips and out for a day of errands. She loves to sit at the front door and announce when we have guests. She will immediately push her head between their legs and demand they scratch her butt. She is semi-trained. She will come when you call her if she doesn't see anything better outside and she knows the boundaries of her yard. I know that if she ever strays, it won't be far because she would miss her daddy too much.
We found out last month that our sweet Kailee girl has cancer in her rear leg. I took her to the vet because she had been limping on it off and on for a few months. It seemed to have gotten better, but suddenly she was limping and nothing was helping. Steve and I discussed that cancer was an option the night before. The vet had hinted at it during her last visit, but when it seemingly healed we thought we were safe. We both held her and cried. My tears were licked away by our girl. Ella and Josh were with me at the vet. I held it together as I sent them out of the room, I knew by the vet's look it wasn't good news. I made it home, sent the kids out to play, snuggled up with Kailee and let the tears flow.
We told Ella and Josh that Kailee has a "Disease" in her leg that is breaking her bone apart, but we will not tell them it is cancer yet. We do not want Ella or Josh to relate Kailee's disease to Ella's or anyone's cancer. Mostly because I'm sure they will ask questions that I just don't know how to answer yet.
I am so sick of the word cancer. My daughter, my best friend, my dad, and now my dog? Really? How does anyone take this in, digest it, comprehend it? How do you wrap your brain around this much suffering when you feel so helpless? So, I freaked out for a little bit, cried, then sucked it up, put my faith in God and moved forward- because that is all you can do. I know there is a plan that I am not privy to. A reason and an understanding of these events that, at this time, is beyond what I can understand. They call it faith for a reason. There isn't anything I can Google that spells out to me why things have happened this way, and I know it's not about me. I may be a small part in how these things play out and how they impact others, but that is it.
I often wonder what God's plan is for me. How I'm suppose to make an impact on this world and make decisions that honor God, my husband, my family and my friends. I think you don't understand God's plan until your in it or it has happened. In other words, hind sight is 20/20. Often I look back and think, I shouldn't have passed up an opportunity to help someone or act differently, but it is not until I look back that I realize what God might have had in store for me, or that me missing that opportunity sets me up perfectly for the one that God really wants me to be present for. Somehow this all plays a part in his plan and I know one day I will be able to look back and see clearly what eludes me right now.
Our sweet Kailee Girl is hanging in there. She has good days and bad. When I get the chance I snuggle up in her dog bed with her and let her lick my face with reckless abandon (this totally grosses me out, but her tail thumping on the ground tells me it is bringing her joy). She gets to eat pretty much anything she wants now, and her strict diet is gone. The kids made a paw print stepping stone for her and put 'Best Dog Ever" on it. The vet told us she had at most four months, but I know he is not the one that decides that. Whenever that doorbell rings, she limps over to the door and wags her tail like a 6 month old puppy. She is so much a part of our family, I still can't imagine what our home will be like without her and honestly, I don't want to. She will always be our first baby.
This commercial came on the other day and I made Steve wake up and watch it with me.
So close to the end, but a little reminder that we are not quite there yet. This is a picture of Josh and Steve in the ER last night waiting for Ella's blood work to come back.
Ella has been coughing for the past week, and Saturday late morning, she took a nap. Then she ate and fell asleep next to her brother on the couch. If you have been keeping up with us you know that Ella NEVER NAPS! So we went out for some fresh air, and came back to a temp of 101.7. It had been slowly creeping up all day, but hovered in the 99's. Then all the sudden- 101.1, 101.5, 101.7 within 30 minutes. If you are a cancer mom you know that we live and die by this thing here:
Whenever there is a twinge of wonder in my mind about how she is feeling- I grab this thing. Got a cough? Go get the thermometer. More tired than usual? Go get the thermometer. Crankie? Go get the thermometer. Not hungry? Go get the...well, you get the picture. And for our family, one isn't enough. I have two of these and usually can't find one of them when I need it. I also bring it to the hospital with me because she won't keep theirs under her tongue and she will be burning up and only have a temp of 98.9. Or last nights ER nurse check which was 99.3.
I don't like the ER. It never use to bother me but when the Doctor called and said do you want to get admitted or go to the ER, I said ADMIT US! Steve and Ella chose ER, so I was outnumbered. When we got there the staff parking lot was empty, but the patient lot was full, so Steve had to drop us off and go over to the main parking deck and catch up with us. It took him about 15 minutes to get back to the ER. When they called us back for triage, I told them I would need to go back out to get my husband and they said not to worry because we would be going back to the waiting room. I told her we would not because there was a possibility Ella was Neutropenic and it wasn't safe for her to sit out there. She ignored me. So I was getting REALLY warm fuzzies about how this was going to go. They gave us the option of sitting back in the waiting room or standing inside the entry door by the wheelchairs till they had a room for her. Maybe I'm just a freak, but seriously? Wait with your child inside the door by the wheelchairs where there is no place to sit until we call you? They had no place for any immune suppressed person to go except the front door. I was so very temped to walk right out that door! I waited patiently, holding by burning hot kid for 5 minutes, then I messaged my doctor.. After that I told Steve 5 minutes and we were going to admitting. It was only under Ella's protest that I stayed. She did not want to have to spend the night under any circumstances.
Once we got called back, things ran much smoother. For the first time Ella was accessed smoothly in the ER. The entire time we were waiting for her to be accessed Ella kept repeating "Momma I'm scared." I was so very grateful it went well, and she fell right back asleep as soon as they were done. They also re-took her temp and it was 101.4. Her counts were good so they gave her the usual 'Just in case" antibiotic and we were home a little after midnight. Ella slept until 9am this morning. Her temperature is at 99.3 so we do not need to go back to the hospital unless it hits 101 again. Fingers crossed!
Part of our crazy support team.
Now after all this is done, is when I, Katie, start to lose it. The enormity of watching my family sit in that little ER room, everyone sleeping and waiting together, it is overwhelming- but in a good way. I was watching them and realizing how much this cancer thing impacts our entire family and how very blessed we are that we are in it together. All present, all working together and waiting together to help Ella heal and move forward as a family. So many times people have said "I don't know how you do it." Well, I do. We do it because we are truly a team. We love together, work together and support each other. And it is not just the 4 of us. It is grandparents, neighbors, friends, and family. As soon as I put out word the we were on our way to the ER, our support team kicked in with prayers, requests to help out and just "Thinking about Ella" wishes. If we didn't have this "Team", we wouldn't have made it this far in one piece. I have read blogs from other parents whose marriages have failed when faced with this stress. From the start Steve and I said we would make sure that we would continue to watch over and care for our own relationship during this journey, and I am glad we made that commitment to each other. Don't get me wrong, last night when I threatened to walk out of the ER, he looked at me like I was a crazy woman, but he would have been right behind me. I know he's got my back on sane days and crazy days. I love you Steve.
Team Van Gheem 2011
Today Ella and I are singing:
Ella just asked me to put this one on her MP3 player. I think we will!
If anything changes I will keep you updated, but for today I think we will listen to some music shake our booties a little and chill out.
When I was in my 20's I remember joking with friends that "older" people only talked about the weather and what was ailing them. With "40" only a few days away for me, I can see why.
On Monday Steve had to go in for a minor procedure. Only problem was the procedure had to be done by a major artery, so they had to put him under. He did fine, but that was what our conversations were focused on for Sunday evening and Monday. On Tuesday we focused on Ella's chemo at Loyola. (More on this in a minute) And on Wednesday I took a friend in to tested to see if her cancer is coming back. I totally get why this is such a hot topic of conversation. I just wish I could focus on God more than these medical issues.
Proverbs 3:5 Trust in the LORD with all your heart and lean not on your own understanding;(NIV)
Josh and Ella
Ella had clinic on Tuesday. She started the week by vomiting and getting a congested cough. Ella's favorite doctor was in clinic this week, but her favorite nurse has been out on bed rest. Her numbers were good and she had her chemo. Then we got to talking with her doctor about the remainder of her treatment. 38days of chemo left. It seems so surreal to me. I'm happy, but I am also starting to get nervous. The chemo part I am happy about. I can not even express how elated I am to not put drugs into her body any longer that I know are making her feel sick. I am excited to see what a non-chemo and non-steroid six year old Ella will be like. I feel like my real daughter has been clouded over by these crappy drugs some days that don't allow her to be the happy, funny and carefree child I know she can be. The nervous part comes from the unknowns. It comes from not knowing if she is going to re-lapse. Not knowing if the cancer is back between check-ups at clinic. Not knowing how act if she does get sick or have a cold. It will be our new "Normal" and I can't quite see what that might be like yet.
The remainder of her schedule looks like this:
Clinic and Chemo- Oct 16th
Oct 28- Last day of Chemo!
Oct 30th- Bone Marrow Procedure
November 13th- Removal of Port
Then Make a Wish trip! They are waiting to remove her port until I get back from a mission trip to Haiti in the beginning of November. Ella is so excited to be counting down to her Make A Wish Trip. She is most excited to ride in a limo. What she doesn't know is that on her last day of Chemo, her dad and I are going to rent a limo to take her and her friends out. I can not wait to see her face when that limo pulls up!
Here is what I ended up doing with Ella's photos. I just want to make people aware that even though it is hard to look at or hard to deal with, it still happens. Kids get Cancer too.
Feel free to use any of these images of Ella to help spread the word. September is Childhood Cancer Awareness Month. We are walking this month to raise funds for research for childhood cancers. If you are local and can walk with us- please join us. Steve and I will be the official photographers this year for Chicago's Cure Search Walk. Here is a link if your interested in donating or joining us.
Two years ago my daughter Ella was diagnosed with Leukemia. To be honest, this morning when I woke up, the last thing on my mind was the anniversary of her diagnosis. I can not believe it has been two years. There are enough thoughts and feelings swirling around my head right now, I think I could fill a book.
Right now she is sound asleep on the couch. She fell asleep early and we don't want to move her for fear that she will wake up and not fall back to sleep. The past few days she has not been sleeping well- thank you higher chemo and steroids! I will be so glad when she is done. We were running low on her steroids and Steve wasn't sure if we would have enough to finish this dose. I told him "Good, I don't want to give it to her anymore so I don't care." We had a good 10 second stare-down before I flinched and gave in. I'm just so sick of putting this crap into her body. Come on 62 days!
Ella right now
Just one more plug for Cure Search. Please come walk with us, or help us find a cure by donating at Cure Search- Ella .Steve and I are the photographers this year for the walk, so I will be posting photos again this year. We are also hosting a bake sale at the Loyola Medical College this week to help raise funds. I hope those medical students like sweets!
Thank you all for 2 years of following us, prayers, and positive feedback. Ella is old enough now to read all the notes you leave on here, so feel free to leave her a message.
Ella had clinic today. Her counts were about 1100 and she was in a great mood. The only time she was upset today was when our doctor had to call in another doctor to consult on a rash. At that point there were 10 people in our little room. Ella was laying on the table and hiding her face in my chest. She pulled me down to her and said "Momma, there are too many people, too many people!". I took her blankie and covered her head. 3 of them left at that point and she was much better. She has a fungal rash ( they think) on one of her arms and a leg so now she will be on another medication to see if it helps. What's one more right?
So, September is Childhood Cancer month. I think everyone is aware that October is Breast Cancer month, but not many realize September is dedicated to the kids. In order to help promote awareness I am posting a series of pictures throughout the month on my Facebook sites. Feel free to share these pictures to help everyone know that our little ones suffer too.
Feel free to let me know which one is your favorite. I will get off my little soapbox now!
Ella only has 67 days left of Chemo. She is getting really excited to go on her Make A Wish Trip in November. She has picked a Disney Cruise and is so excited to take a limo to the airport! Right now she is at the end of our driveway with her cousin and brother holding a lemonade stand. They are yelling at cars and asking everyone that passes by to "Help Fight Cancer". They did this all on their own, I only made the lemonade.
Thank you for your continues prayers and support. Feel free to comment and let us know your favorite picture.