A Journey of Miracles
12-3-16 UPDATE FOR MARA: (please keep us in your thoughts and prayers ❤️)
Mara is four years old and she is scheduled for surgery early Monday morning. This is a very complicated & dangerous surgery. The head surgeon will be overseeing and his top doctor will be operating. The tumor is part of her brain and intricately laced throughout many key areas. She already has some permanent hearing los slight facial paralysis on the right side. This could be worsened by the surgery along with other numerous consequences. Of course we won't know the full effects until after surgery. Nor will we know exactly how to treat it until the biopsy is complete. Surgery first, radiation and then chemoto get the rest of it. Then surgery will be about 10 hours long. We are very grateful our surgeon canceled his out of town plans and will come in on his off day to care for Mara. She is truly getting the best of the best for doctors and surgeons. This case is a very delicate one, and life is going to change for us. For as large as the tumor is, they are very surprised she still has the functions of a normal 4 year old.
Thanks for your thoughts and prayers.
12-4-16 - A blessing
of snow today.
Party time with Family & Santa Claus
12-5-16 Surgery Day
Mara 4 yrs. old so bravely went for surgery at 8:22 a.m. for 1.5 hrs. of prep time. Surgery began around 10.
Surgery could be 8-10 hrs. long.
Thank you ALL for you prayers and sharing our post so more people will pray for Mara, her family and surgical team!
Pictures taken at the boy/girl and cousin’s party on Sunday.
AFTER SURGERY UPDATE FOR MARA:
Sorry for the delay, we know you all have been worried but we needed some time to process our news. We have received good news and bad news...Mara is out of surgery and it went as well as could be expected. The doctors were not able to remove entire tumor, which we knew going in to surgery. She is strong and has moved her limbs and even her tongue, which are all good recovery signs. She will remain on a ventilator until morning, even though she is breathing well on her own, but with it being night and the tumor being close to her breathing center, the doctors are erring on the side of caution. We won't be able to tell if there are any deficits in her abilities for a few days. We were told that the tumor was a part of her brain and brain stem and, if we hadn't gotten her in and had surgery when she did, she would not have made it through the next three weeks. We are thankful she is still with us! (Thank you Doctor for ordering a CT!) Although the biopsy has not been completed, our surgeon is confident in the type of tumor she has. Unfortunately, this is a type of tumor that does not typically respond to chemo, but we won't know for sure until the biopsy is back. We will not know a course of treatment until those results return. The surgeon is telling us not to get ahead of ourselves and to take it day by day. He knew that this was going to be an extremely tough & complicated case. Thank you for your love, support, and for all of your well wishes and prayers. Please keep them coming!
Trust in the Lord!❤️❤️❤️❤️❤️
Mara had a rough night she aspirated into her lungs and has a forced oxygen mask now. Mara seems to be responding better with this.
Thanks for your prayers, love & support
12-7-16 Continued prayers for Mara -The ventilator was removed Tuesday and oxygen was added. Mara is responding to commands such as opening her eyes, squeezing fingers, wiggling toes and even kicked her leg. They continue to remove secretions from her nose and mouth, which she doesn't like at all. Wednesday she was vomiting so a tube was inserted through her nose to her lower intestine to eliminate bile. Currently she is not able to swallow and a feeding tube was inserted through her nose. Today her blood pressure was elevated and now they have that under control. A catheter was also inserted. Mara is a fighter and we appreciate all your love, support and prayers. Miracle for Mara! ❤️❤️❤️❤️❤️❤️❤️
On Friday, 12-9-16 update Mara's oxygen was removed. ❤️ Doctors were going to consult to determine if oxygen was needed at nighttime. Mara is alert, talking and responding. ❤️ Difficult at this time to understand her since she has/had tubes down her throat. Monday she will have surgery to have a brain shunt.
This is a narrow piece of tubing that is inserted into the brain in the fluid-filled ventricle. The tubing is then passed under the skin into the abdomen.
Thanks for your endless support, love and prayers.
❤️ Miracle for Mara! ❤️
12-11-16 Mara had a very rough night last night. They inserted a big red tube down her throat and she vomited everywhere twice. She is starting to get her gag reflex back, which is awesome news. She was able to hold her head back enough to keep her airway open and she didn't need to sleep with the neck collar on. This was a short night for all. Thank you all for your prayers, love and support. Miracle for Mara! ❤️❤️❤️❤️❤️
12-11-16 - Mara goes for a wagon ride. Good medicine for Mara, Mom & Dad! A special visit from her Aunt April and Uncle Jason.
12-11-16 - 5:00 pm update - Mara may have an infection she is running a low-grade temp and white count is elevated.
White count could be attributed because she is on steroids.
Mara is on round the clock Tylenol every 4 hours to manage pain but could be masking the fever. Her temperature is under 100.
They took some cerebral fluid today and will test it and if it shows an infection they will not do surgery Monday to insert drain tube into brain to stomach. Mara vomited again around 4:30. Continued prayers for Mara and her family are very much appreciated.
12-12-16 2:00 Mara is have a brain shunt put in today estimated surgery time is 90 minutes. This is a narrow piece of tubing that is inserted into the brain in the fluid-filled ventricle. The tubing is then passed under the skin into the abdomen. Thanks for your prayers, love and support.
12-12-16 8:00 pm update. Prayers were answered there was no infection and cerebral fluid was clear! Surgery went well and they will do a MRI later tonight to check their work.
Next is therapy for swallowing and time for healing. The plan now is to start radiation between Christmas and New years. Mara's oxygen alarm went off several times during the night last night.
They decided to put her on oxygen while she was sleeping.
Thanks for your prayers, love and support!
12-13-16 Mara and Chase (her puppy dog) were greeted by Cody today. This sure was a special visit for her
12-13-16 Mara was moved to a shared room on the oncology floor today. The nurses took her for a car ride. Mom said she Mara had a good day. Mara uses oxygen at night time only.
Continue prayers for Mara and her family. Miracle for Mara!
12-14-16 Mara had a visit from Buddy the Elf. He made her smile and she was happy.
Mara went to the library for story time and caught the tail end of a magic show.
Mara had physical therapy today and doesn't like it because they want her to walk.
She can barely hold her head up and she gets dizzy.
On Thursday, Mara will need to dress herself because they want her to get back into daily routine.
Today they gave her an ice chip and two bites of applesauce and plan to repeat
this on Friday or Saturday followed by a swallow study.
The tube in her nose goes into the intestine and bypasses her stomach they want to
pull it back into her tummy possibly Thursday.
The radiologist can't wait to get Mara started with radiation she is chomping at the bit.
Next week they want to fit her for her mask that she will wear during radiation and start some orientation.
If Mara can walk and swallow she can go home till radiation starts.
She told her Mom she didn't want to go home.
Mara and her family thanks you for the prayers, love and support
Less than 18 hour challenge for some of you! Hop on the meal train challenge! Check out this link: https://mealtrain.com/wo84y0
For those that won't be able to participate in the meal train challenge I have a different challenge for you. Please share 'Miracle for Mara' Facebook page so Mara can come home for Christmas!
Miracles can happen one prayer at a time! Thank you! Miracle for Mara
They think they will release us tomorrow or Saturday. Swallow study tomorrow morning at 9.
She will still have the feeding tube when we bring her home.
12-15-16 8:00 pm update - Tomorrow we begin at 8 in radiology for a preliminary tour, mask and bite plate creation. At 9 we move onto the swallow study and then at 10:30 we have her vision test.
They have pulled the feeding tube out of her intestine and placed one in her stomach. She seems to be tolerating the feeds pretty well. She worked with physical therapy this morning and did a good job.
We took several car rides and I had her walk to the car each time. (With support of course)
Her right side doesn't work quite as well as her left, but hopefully that is
something she can overcome with time and therapy.
She has excellent doctor's here. They have been able to break through and get her to smile.
We saw several today...and she is not always very receptive!
Thank you for your prayers, love and support. Miracle for Mara!
12-17-16 Brinley (little sister) arrived today and crawled right in bed with Mara and put her arm around her. She said "It will be ok Mara, I'm here now" Special sister time!
12-16-16 - We won't be discharged this weekend. Mara is going to need a more permanent feeding tube placed in her abdomen instead of through her nose. She swallows but her esophagus doesn't open. They want to do that on Tuesday when they do the lumbar puncture and port placement. On Monday she will have an MRI and CT done in preparation for radiation.
12-17-16 - Special sister time - looks like the best medicine
12-17-16 - Brinley loves her big sister Mara
12-17-16 - Brinley taking Mara for a car ride
12-19-16 - She also had a visit from Grandma Sue. Grandma brought hat, a cozy hooded blanket, giggles and comfort when Mara got sick. She has not been tolerating what they are feeding her through the tube in her nose and it causes her to throw up. They tried modifying what they are giving her but she continues to throw up. This is what prevents us from going home because her esophagus doesn't open and she is at great risk for aspiration and pneumonia.
12-25-16 12:07 am - We survived the first full day home! We are still working on refining the rate we feed her...it may uave been too fast last night, because she did throw up. I slept in her bed and woke up with her legs across my chest. She may be an acrobat in her sleep...and she hogs the covers. Today she was excited to have a wrapping party. Some of my sisters, my mom, my niece and nephews helped wrap all of our Christmas presents today. I didn't wrap a single gift! They were amazing! Grandpa Ray and Uncle Jason had the task of keeping the little girls entertained and out of the basement. A home care nurse and many other visitors stopped by with gifts, treats and well wishes. The outpouringof support still amazes and overwhelms us. The litte girls wrapped up the evening with some sister time on the couch. They went to bed very excited about Santa visiting tonight. MERRY CHRISTMAS to all of you.
May you be as blessed this season as you have bestowed your blessings on us!
12-25-16 - We had a remarkable Christmas! MANY THANKS to our friends, family, neighbors, churches, businesses, Adel Family Dentistry and Midwest Heritage Bank. We live in a truly incredible community. We are so blessed. Thank you. ❤ to you all. The Nevins/Larsen family
Yesterday when Mara's doctor's and nurses would ask her what she got for Christmas, she would smile and say EVERYTHING.
12-26-16 10:00 am - Mara is on her way back to the University of Iowa this morning. She started throwing up around 6 this morning. We thought she was dehydrated because she only peed once in 24 hours and we have had a hard time keeping fluids in her. We took her to Blank children's this morning. They said her electrolytes looked good but the U of I wanted to do their own testing. So she and Lyle are in an ambulance on their way. I will be headed that way after I pack a few things and gather Brinley. Christmas was wonderful! We spent with family and friends. Thanks for your love, prayers and support! Miracle for Mara!
Mara got Moo for Christmas. She has been sleeping with Moo and was transported by ambulance in Moo. Moo makes Mara smile!
12-28-16 -Radiation went very well today! They are so impressed with how she can lay so still at 4. The benefit to that is that she does not need to be sedated every day. I was expecting hair loss but not immediately. You can see where that hair is already gone. She played hard today, had a visit from Cody the dog, did some crafts with her friend Taylor...and took a 3 1/2 hour nap! Last night we drove around the hospital with Moo. She likes me to sleep right beside her. I'm happy to do that and thankful to finally have a flat surface to sleep on!
The g-tube has been so on and off again...even today. We are scheduled to go tomorrow at 9am....but now that the team has decided that the anesthesiologist is questioning if we need to go tomorrow or if we should wait, since she has a cold..... we'll see! I'll keep you posted. Thank you always for your kindness and prayers!
12-26-16 8:00 pm - All of the tests look good. Her shunt is working just like it should. They are rehydrating her with a an IV and feeding her through the tube in her nose. She is in good spirits. The Dr.'s and nurses love to tease her. She is developing quite a cold. I hope that doesn't effect her being able to hold still for radiation on Wednesday! Mara, Moo and Chase arrived safely to Iowa City.
12/27/16 - All of Mara's tests looked good and the shunt is working properly. They have given her fluids to rehydrate her, so her kidneys don't go into distress. That was what i was most worried about! They plan to keep her until they get her on some different medication to help her stomach work a little faster and adjust her feeds to get them figured out. They don't want to run the risk of her being dehydrated. That poses a huge risk to her kidneys....that's what i was worried about. We may have rushed it a bit to get her home for Christmas. Sooo...we will be here for the first day of radiation tomorrow. They also plan on placing the g-tube on Thursday. Thanks for your continued prayers and support. ❤ to all.
12-29-16 - Mara's G-tube surgery went well this morning! They were very pleased. They placed a tube that can easily be changed into a tube that will feed directly into the intestine if needed. Currently it feeds into her stomach. If she can keep her formula down, that's where it will stay. Thank you for all of the prayers! Radiation will be at 330 this afternoon.
1-1-17 - Happy New Year everyone! My new year's partner fell asleep. We celebrated earlier in the day by playing bingo, having a bubble blizzard and making our own pizzas. Mara won a nail polish and lipstick kit during BINGO. The lipstick liner reminded her of her mom's brow pencil. LOL. She was so proud! Brinley and Lyle spent the past few days with us, so they were able to celebrate too. Mara cried when Brin left to go home tonight. We will be in the hospital until Mara's feedings are straightened out. They are now trying to do a slower continuous feed. She needs to be able to tolerate it (not throw up) for 24 hours before they will release us. So far she has been nauseous but not gotten sick...although we have had to pause the feedings to prevent that. It feels a little reminiscent of being released before but now there isn't a big push to get us home for the holiday. I'd really like to get it figured out before we go home again. I would also like to explore nutrition options other than formula. I have been reading about cancer diets and blended diets for feeding tubes. I'm not sure if would help or not but so much is out of my control and i feel helpless in helping to cure my child, that at least i could feel like I was doing something...aside from seeking medical treatment for her. Hoping 2017 brings good things!
Hoping all of you have a wonderful 2017! Thanks for everything!!!
1-1-17 2:00 - We are going home today. Brinley and Lyle came back to get us. Mara was so excited to see her! Mara did throw up this morning...i guess we will figure this out as we go! I have a feeling it will be a work in progress to find that balance no matter where we are.
Many blessings to all of you in 2017. ❤'
1-5-17 We had a great time today at the children's museum in the Coralville mall. We spent hours there after radiation and swallow therapy this morning. It was wonderful occupational and physical therapy for Mara. Her balance is still off but she is able to navigate pretty well on her own. The girls should sleep well tonight. My apologies, my previous update didn't get posted. Feedings are still a work in progress. Radiation is going well. They will assess the effectiveness of the radiation at the end of the month. Thanks for your continued support and prayers! ❤
1-6-17 Back home for the weekend! Mara had a cranky day. Things were just not quite right in her world. Her pony socks were dirty and we left her my little pony blanket at the Ronald McDonald house when we went to radiation. She had a meltdown. Lyle went back to get the blanket but it was aleady too late. We ended up waiting until this afternoon to go back and have the radiation. She was in a little better frame of mind then. And of course we remembered to bring EVERYTHING! Clean socks included! They slept on the way home....thank goodness. When we arrived home we were greeted by the Knutson family with supper for us, a gift for Mara and Brinley and a quick visit! It was so nice to have supper ready when we got home and to see them. Mara has missed her friends so much. After they left, Uncle Zak and Aunt Caitlin stopped by with baby Rowan. They also had a gift for the girls. I will have to post a picture of Mara in her new cape. Rowan and Brinley could hardly get enough of each other! At just over 5 months Rowan really wanted to touch and taste Brinley. Brin didn't mind. She loves babies! Sadly i didn't get a picture of the girls....I may have been hogging the baby!! We will be home until Sunday afternoon. Have a wonderful weekend everyone. Blessings to all of you!
1-14-17 - We are back home for the weekend. The clinic is closed for the holiday on Monday, so we won't be traveling until Monday afternoon. Sorry i didn't get anything posed last week. It was just the 2 little girls and me, although we had a good time, i was exhausted and didn't get any free time. We went to play at the museum almost everyday. We were able to play outside one day. We saw the movie SING....Mara still loves to dance! We even attended music group at the hospital yesterday before we headed home. Mara is physically getting better every day. She walks unassisted, can "run", dance and twirl. She needs some intense speech therapy and is still unable to swallow but loves to eat like they do while making movies; chew then spit it out. Brinley says it's gross! She is right!! I am feeding her blended food through her tube during the day and supplementing with pediasure during the night. She has also developed ear pain in her left ear this week. It may be due to the radiation. Her ears look ok but they still gave her an antibiotic and a painkiller. Hopefully this will be short term pain fo her! Thank you for all of your generous support and prayers!
1-17-17 - We made it safely to Iowa City last night. We had a good weekend. The girls attended their cousin Harlow's 3rd birthday party. They insisted they wear their party dresses. 😆
12-20-16 - 10:00 am The spinal tap (lumbar puncture) wasn't done today. The lumbar puncture needs to be done by the end of the week. We have radiation simulation on Friday. They also need to get her nutrition figured out. She has been throwing up. They think she is getting too full too fast. They keep trying to slow it down to give her time to digest. Thanks for your prayers, love & support! Miracle for Mara!
12-20-16 -6:30 am Spinal tap will done sometime today. Praying fluid will be cancer free. Thank you. Miracle for Mara!
On Monday (12/19/16) Mara had the stitches removed from her first surgery. (The one that removed the tumor). She also had a CT and an MRI that morning. All done without sedation! They also created a plastic face mask that she will need to wear for the radiation treatments. To create the mask they placed a warm plastic moldable mask over her face. She had to lay very still while the mask hardened. They decorate the mask for the kids. She chose to have hers decorated as her favorite my little pony character, pinkie pie.
Chase loves physically therapy too!