Overdue Update!

I have been meaning to update the blog for quite some time regarding how Emma is doing. She is doing WONDERFULLY!! After meeting up our oncologist in January, he suggested that Emma be seen by a pediatric neurologist and a pediatric ophthalmologist. From an oncology standpoint, she was doing great, but he wanted to just make sure her vision was still good and her brain was functioning normally. We met with Dr. Groves, a fabulous pediatric ophthalmologist here in Tulsa at the beginning of February. He confirmed that Emma does have Horner’s Syndrome, which is basically a result from the surgery to remove the tumor. Dr. Groves explained that there are certain nerves that travel from you brain down into your chest area and then back up to the eye, so when the tumor was removed, it caused the Horner’s. Her right eyelid droops a little bit and her right pupil is smaller than her left. Dr. Groves also said that she has astigmatism that mirrors itself in both eyes. He did not seem to think this was caused from the Horner’s and was fairly confident it would correct itself on its own. The Horner’s Syndrome is not affecting Emma’s eye sight at all, thank the Lord! It is more of a cosmetic thing that can be fixed later on in her life, but we are just thankful that her vision is good. We will go back in August for another check.

We went to see Dr. Siegler, a pediatric neurologist, during the second week of February. Thankfully, this was a quick, brief visit, because he thought Emma was doing great! We will go back for another check in the middle of May. The day after we met with Dr. Siegler, I took Emma to have a hearing test done. We had been told that children can sometimes lose their hearing after going through chemotherapy. It is not an all of a sudden hearing loss; it is something that slowly decreases over time. So we decided to have a baseline hearing test done. So far so good! We will go back and have her hearing checked every 3-4 months for a while.

Emma girl finally got her Broviac removed on March 3rd! The whole surgery took about 20 minutes, and she was a trooper. We waited a couple of days for the incision to heal before we gave her a bath, but what a fun night that was for Evan and Emma!

The plan from here on out is to continue to go see Dr. Mohamed every month for a while. Emma will have her next MRI on April 2nd. After that, I think we schedule another MRI for 3 months later.

Emma has been crawling like crazy and pulling up on everything. She babbles, waves, plays peek-a-boo, and makes us smile all the time. What a roller coaster these last 5 months have been. We are so thankful for all the prayers and support and love shown to our family. Thank you so much!!

Love,
Kendall

Here are some pictures for your viewing pleasure 🙂

Last picture with her Broviac

Sibling LOVE

Enjoying the beautiful weather!

No More Chemo!

We found out on Friday that Emma doesn’t need to have any more chemo at this point!! Her MRI results were good, and we are so thrilled. This doesn’t mean that she is cancer free, it just means that the cancer is now stable. We will be monitoring Emma with scans and MRIs every couple of months. She still has her Broviac in, but we will go in in a couple of weeks to have it removed. Thankfully it will be just an outpatient surgery.

It still doesn’t seem real to me, but I am so thankful to be at this point. Thank you, thank you, thank you for your prayers and support during this time!

Love, Kendall

Good News

We met with the doctor this afternoon to discuss Emma’s next step in treatment. So far she has had 3 rounds of chemo, 2 MRIs, 2 blood transfusions, 2 chest tubes, 1 major surgery, 1 always-there broviac, plus other things I’m sure I am forgetting. BUT, today, Dr. Mohamed told us that he wants to do another MRI, scheduled for 8am tomorrow, and then if the results come back as he expects, she will not have to have any more chemo and we will just be monitoring her with labs and scans. That’s right….NO MORE CHEMO! Praise God!

We are now hanging out in a room at the hospital, waiting until the MRI tomorrow morning. She has already had a chest x-ray and an echocardiogram since we got here a few hours ago. Tomorrow she will also have a hearing test done, just to make sure her hearing is ok.

Tonight we are praising God for bringing us to this point. I am just so thankful that no matter what the MRI shows tomorrow, good or bad (but hopefully good!), God is still with us, He is still trustworthy, and He is still faithful. Thanks again for walking with us on this journey!

Love, Kendall

Side Effects

When we first realized Emma was going to undergo chemotherapy, we were nervous for how it would affect her. I know chemo affects everyone differently, but the doctors told us to be prepared for nausea and vomiting, hair loss, and tiredness. Thankfully, Emma has been handling the chemo fairly well. She has lost most of her hair, is really sleepy and uncomfortable, but she hasn’t thrown up any, which is such a blessing. I know a lot of babies lose their hair just from sleeping on the backs and rubbing their heads on the bed, but it made the whole cancer thing more real for me when her hair started to fall out. Up until then we hadn’t really seen any obvious signs of her battling cancer, but the hair falling out was definitely proof. Although she has beautiful red hair (hopefully it will come back red), it’s just hair.

Emma was a great sleeper really early on, but the past few months has not been sleeping well. Levi and I joke that we feel like we have a newborn all over again!

The thing that has probably been the most difficult thing for Levi and I, is that she seems to be uncomfortable 80% of the time. She will act fine and be playing, and then the next minute she is hysterical. She arches her back a lot which makes me think she is in pain. Most of the time she just wants to be held, but even holding her doesn’t seem to always help. It’s hard to know if she is just going through normal baby things like growth spurts and teething, or if she is aching. The shots that we have to give her can make her bones hurt, so I’m assuming that’s what it is. It’s hard, as a parent, to know your baby is uncomfortable and not be able to do anything about it. We are able to give her pain medicine which helps for a little bit.

Sweet Emma has also lost her appetite! I am still nursing her, but she has always taken a bottle really well. Lately, she has no interest whatsoever in a bottle. We have tried baby foods with her and she does not like them at all. Gagging, hysterics, the whole shebang. Even when I nurse her, she doesn’t eat much. She doesn’t act hungry either, I think it’s just more of a comfort thing. I have heard that the chemo can make foods taste differently, plus she is experiencing new textures with the baby food, so I’m sure it is a combination of a lot of things. Hopefully, once we are done with chemo, she’ll want to eat more!

Overall, Emma has been such a trooper. She brings us so much joy each day. She LOVES Evan and giggles and claps whenever he does something silly. We are so grateful that she is still smiling despite everything that is going on.

Thank you again for your prayers and support. So many of you have truly shown us what the body of Christ looks like in action, and we are so thankful.

Love, Kendall

Flexibility

Throughout this journey of having a child with cancer, I have learned the importance of flexibility. Appointments don’t always occur right on time, blood counts don’t always come back with good numbers, and broviac dressing changes can be lame. BUT, appointments in the clinic can be super quick, blood counts can come back great, and broviac dressing changes can happen without a single tear shed. 🙂 Flexibility is the “quality of bending easily without breaking”. I have always considered myself a fairly flexible, going-with-the-flow type of person, but lately I find I am having to CHOOSE to be flexible. And choosing to be flexible is not always easy or fun or convenient.

We went to the oncology clinic today for Emma’s broviac dressing change and lab work to be done. Today was the first day that she didn’t cry AT ALL when her dressing was being changed! Brave girl. Her hemoglobin counts were low, and the pediatric oncologist in the clinic today, Dr. Hum, said they would continue to get lower before they rose, so she wanted Emma to have a blood transfusion. For the blood transfusion we were sent down to the Children’s Day Hospital, which is in the basement of the Children’s Hospital. We brought Evan with us to this appointment because we thought it was going to be a quick appointment, so now we were having to entertain him while they prepared things for the transfusion. Side note-I normally pack snacks in Emma’s diaper bag because I have this fear of being stuck someplace and having no access to food; however, I had no snacks in the bag today…uh-oh. We decided Levi would take Evan home because the transfusion was going to last 3 hours. I went upstairs and bought some lunch before they left, so I knew at least I wouldn’t go hungry. 🙂 Well turns out, sometimes things in the hospital don’t move along as quickly as one would hope. We got downstairs around 12:30, but her transfusion didn’t get started until 2:30. Thankfully, Emma slept on and off while we waited. The blood transfusion just went through her broviac, so she didn’t have to get any additional IVs or anything. Emma did great through it all; I, on the other hand, was BORED. The TV in the room didn’t have a remote, which wasn’t so bad, I just watched HGTV for 5 hours. I can tell you all about the show “Flip or Flop” and anything you want to know about HGTV’s 2014 Dream Home. The chairs in those rooms are so uncomfortable, there are no windows anywhere since you are down in the basement, and this might be the worst thing of all: there is barely any cell phone service!!! 🙂

While I was sitting in that room, I kept asking the Lord for His help in being flexible. I found myself wanting to get frustrated at all the little hiccups in our day, but really, in the grand scheme of things, it wasn’t so bad. Levi was able to get laundry done around the house (hooray!), Evan was able to take a nap, and I was able to spend some a long time just holding Emma. We will go back to the clinic two times next week for labs to make sure her counts are climbing back up. Until then, I will continue to try and be flexible whatever the day brings, for I know that even in the valleys, HE is forever faithful.

Love, Kendall

Home

We are home! Emma finished her third day of chemo today, and we were able to come home as soon as it was finished! It feels so good to be home. It is tiring having to be in the hospital, plus trying to keep life as normal as possible for Evan.  He has been such a good sport through this whole thing.

We will have to give Emma her GCFS shots every day, starting tomorrow, for 10 days, which I’m not thrilled about, but she handles them pretty well. We’ll go back to the oncology clinic on Thursday to check her blood counts and have the dressing on her broviac changed. For now, we are just glad to be home and are so grateful that she seems to be handling chemo well.

I know I say this each time, but thank you so much for your continued prayers and support. They are sustaining us during this journey.

Love, Kendall

Update

I hope everyone had a Merry Christmas! We had such a great Christmas, getting to spend it with both sides of our family. It was so fun to see how excited Evan was this year, and Emma was such a happy girl on her very first Christmas! We are very blessed.

On Thursday, the 26th, we had an appointment at the oncology clinic to check Emma’s counts and meet with the doctor. The clinic was busy that day! Every time I start to feel sorry for myself and our family for having to walk this journey, I am reminded that we aren’t the only ones who have a child battling cancer.  It’s comforting and heartbreaking all at the same time.

After we were finished in the clinic, we were admitted upstairs for her MRI. Her MRI was scheduled for 3:30, and then depending on those results, we would either be starting chemo or getting to stop chemo for a while. I was nervous for it all: the MRI, the results, the waiting, the unknown. Thankfully the MRI went well, and she came out of the sedation like a champ. Levi and Evan aren’t home for the night, since we knew we probably wouldn’t be getting any results until Friday.

Friday morning Dr. Mohamed came in with results from the MRI- he said it showed marked improvement from the last one, but there is still a little line that there aren’t totally sure about; it could be residual from the tumor or it could be stuff from the chemo. He wants to go ahead and do another round of chemo. I have to admit, I was a little bummed that she was going to have to have another round, but I also want them to get all of that junk out of her! This round is the same medicine as her first round, so she will get chemo over 3 days.

The tentative plan now will be to do this round of chemo, then schedule another MRI before her next round. Depending of what the results of that say, we will either do a 4th round or just watch.  I am under the impression that once these immature nueroblastoma cells mature, they are no longer cancerous, and since it has not spread anymore, the dr’s just want to shrink it down enough so that it’s not pushing on or growing into her spine.

For now we are making ourselves as comfortable as we can in our hospital room 🙂  Thank you again for walking this journey with us! We are so grateful for all the prayers, financial support, and friendship we have been shown!

Here are a few pictures from Christmas:

 

 

 

 

 

 

 

Love, Kendall

 

Update from Kendall

Sorry it has been quiet here on the blog.  Thankfully we haven’t had a whole lot to report. 🙂 Levi and I have been giving Emma her GCFS shots daily since we got home from the hospital on the 4th.  There was some confusion regarding the shots once we got home; our discharge papers said to give her one shot daily for 1 day, but we had been told during her 1st round that the shots are given daily for 7-10 days, so after a quick phone call to the Oncology Clinic we got it all figured out.  Emma would need to be given one shot a day for 10 days.  We were glad to have the clarification, but had really hoped she wasn’t going to need them.  She’s such a trooper when she gets them though; just cries for a little bit and then is back to her happy self.  Flushing out her Broviac is the easy part 🙂

We went back to see the doctor on Thursday the 12th for lab work and to get her Broviac dressing changed.  All of the nurses kept coming in to see our sweet smiley girl.  We met with Dr. Mohamed, her pediatric oncologist, and he was impressed with how well she is doing.  She hasn’t gotten sick at all, Praise the Lord!  The only side effects we are seeing is that her hair has started to fall out a little, she has been kind of fussy, and she is constipated.  Thankfully we are able to give her medicine for the constipation.  Dr. Mohamed said that she may act like she is uncomfortable because of the GCFS shots.  The shots are meant to boost her WBC counts, which can then cause her bones to be somewhat achy.  She seems most uncomfortable at night, which has made for some tiring nights for Levi and I, but she is generally really happy.

Her labs came back as the dr expected.  Her WBC was low, which he said was normal, even though she is getting the shots.  He explained that the shots help to stable out her WBC counts, then they drop right before they increase again.  He expected them to be back to normal range fairly quickly.  We haven’t received a confirmed stage of her cancer, but Dr. Mohamed said that the stage doesn’t necessarily matter because the treatment is the same.  The staging is dependent on where the tumor is found in the body, so he would stage her a 2 or a 3 since there was a little bit pushing on her spine.  He told us that all of the genetic testing came back as “favorable”, which is a great thing and an answered prayer!! Our next appointment is next Wednesday for lab work and a dressing change.  Then the following week, on the 26th, Emma will be admitted for an MRI.  Determining on the results of the MRI, we will either stop chemo and just watch her for a little while, or she will stay in the hospital and receive her 3rd round of chemo.  We are hoping for a great MRI, but we also understand that there is a good chance that more chemo will be needed.  We are just thankful that we don’t have to spend Christmas in the hospital.

Sweet Carly girl graduated from nursing school! We got Emma out of the house for the special occasion, which was a nice evening with family. Carly had a graduation party on Saturday and we had family in town for Christmas today, so Emma girl got to see a lot of new faces this weekend.  We are still cautious with her being held by too many people, just because she is still susceptible to getting sick, but it was a nice to get out of the house multiple times this weekend.  Evan has been such a trooper through all of this.  God knew how much we needed him during this time.  His joy has kept us going when we didn’t want to, and he makes Emma laugh all the time.  She loves watching her brother jump around and be silly.

We have so much to be thankful for this Christmas season!  Thank you for the prayers and for lifting our sweet Emma up to the Lord.  May you all feel Jesus so near to you this season!

Love, Kendall

frozen

I hope you guys are all staying warm, these temps are a little too low for me!

Emma had her Broviac put in on Tuesday. It was done by the same surgeon who took her mass out so that was comforting. She was asleep when they took her back. It went really well and really quick. Only took about 30 minutes! She did great after the surgery and they took her up to Level 3 (hematology/oncology floor). Kendall and Levi just kind of hung out must of the day. I picked up Ev from school and took him up there. The oncologist came in a little after we got there so I was glad I was able to hear what he had to say. He wanted to go ahead and start chemo early instead of waiting until the next morning but they had to run IV fluids for 4 hours before that. Levi went home with Ev that night and Kendall stayed up at the hospital.

They got chemo started around 9ish. This round they did 3 different meds which only had to be given once each this time. The meds are called Carboplatin, Cytoxan, and Doxorubicin. She had Carboplatin and Etoposide the first round of chemo. She has done pretty good with the treatment. As long as we stay on top of pain medication she doesn’t get too uncomfortable. They gave her Zofran prophylactically every 6 hours for the two days following chemo. Kendall said she slept pretty good that night. The next day Ev stayed home from school so the 4 of them just hung out at the hospital that day. Emma thinks he brother is hilarious and loves getting to hang out with him!

Emma will have to have the GCFS shot once a day until they go back to the hospital for labs. This is the shot that helps keep her white blood cell count up. After the last round of treatment the WBC was high enough to where they didn’t have to do the shots at home. Kendall and Levi are kind of nervous about  having to do the shot at home. Thankfully they know a soon to be nurse that can come help them if they need it 🙂

Kendall and Levi were also given Heparin and Saline solution that they will use to flush Emma’s Broviac once a day. They need to make sure they are getting good blood return to make sure it is working. Emma doesn’t seem to notice the Broviac which is such a blessing. Her eye is still a little low. The doctor said it will probably return back to normal once everything is over. Her hair is starting to fall out which is a bummer. I know she could care less about it though. Sweet girl has been so strong through all of this.

Here’s a pic of Ev & Levi before going out in the snow today. Thanks for your continued prayers.

xo-carly

forgot something!

One of Levi’s grow group guys has a girlfriend that makes t-shirts specifically for families who have members battling cancer. Well she has one for sale for Emma and all the proceeds will go to sister’s fight! Here’s the link:

http://flashflood.bigcartel.com

 

xo- carly