My Life

Update on Heather's Family: A Very Strange December

By January 6, 201330 Comments

I don’t know if you noticed that December was sort of a slow blog month for me. Not that I like crowding your inboxes daily, but I do try to post often. This past month has been very stressful. It all started the first week of December…I think. My little girl, who is amazing in every way, started to seem “different.” She was fussy all the time it felt like.  My husband and I both noticed this change in her mood, but we figured it had to be the molars she was getting…even though she never really had acted that way before when teething.

About this same time that she was becoming more fussy, we also noticed she was getting constipated. I think she was actually constipated beginning sometime in November.  Over the course of her life, she would get constipated occasionally, but after a day of increasing her fruits and water intake she would be back to normal. I didn’t think much of her constipation until NOTHING was working. Day after day, for a week, she did not improve. I made her a doctor appointment to see if we needed to give her something to help things along. During bath time a couple days before her doctor appointment, I noticed a puffy thing on her back, just above the natal cleft (aka butt crack).
This lump under the skin made her little butt crack look crooked. That had NEVER been there before. I had no idea what it was so I did what any other mother would do…I googled, “crooked butt crack in baby.” I’m serious. I google everything. The only things I found seemed harmless – from just birth defects (maybe inherited from a parent with a crooked butt) to harmless cysts. By the way, I was able to safely rule out inheritance, in case you were wondering. Nothing that I found actually seemed to describe my daughters strange lump, though. At our first doctor appointment, the doctor was not concerned at all about her constipation and said the lump looked like a cyst. He suggested I just give her prunes for the constipation (which I had been doing daily for two weeks!) and ordered an ultrasound of her”cyst” and an x-ray of her stomach. The x-ray showed moderate impaction of her bowels (basically that meant she had a TON of poop in there!) and the ultrasound was inconclusive; however; it appeared to be what they called a pilonidal cyst.
A pilonidal cyst is an irritated hair follicle and is usually seen in men with hairy behinds! Think ingrown hair that gets infected. Sorry. Ew. It can occur in women and in some more rare cases children/babies, but still, everything I was reading didin’t exactly match her cyst. After those tests, she was put on antibiotics to help shrink her cyst (even though antibiotics do not work in treating pilonidal cysts according to what I had researched, the doctor said we could give it a try) she was given them for 5 days, 3x a day. By the 4th day of being on antibiotics, I had watched the cyst change and get bigger and more red. Back to the doctor we went. He said her pilonidalcyst was likely infected and probably absessed and the only way to get rid of it for good was to do surgery. He thought that this cyst was painful and that she was avoiding pooping because of it. Meanwhile, she was still not pooping despite dietary changes.  She was hardly eating. When she would poop at all (tiny rocks basically, sorry for the details) she would scream in pain, sweat, and say “no, no!” Her overall behavior continued to change. She was more miserable and began to ask to be rocked several times a day. Not like her at all. Prior to
this, whenever I’d try to snuggle her and rock her she would quickly snuggle me for .5 seconds and then want “down please, mama!”
My toddler was seeming more and more like a newborn.  I couldn’t get anything done at home. I just held her and rocked her all day. This CANNOT be normal. I kept trying to talk myself out of panicking, but the sick, throw-up feeling in my stomach just would not go away. As I rocked her for days and hours, looking into her sweet face and sad eyes I felt so helpless as a mother. All I knew to do was pray and keep bugging the doctors. At this point, I was crying almost everyday as I observed the changes happening in my little girl. Could this just be constipation? Is this really even a pilonidal cyst? Why is my daughter in pain all the time? She was on motrin
around the clock, too. She was beginning to prefer being rocked or laying down almost 100% of the time. She was walking less and less. She was also not sitting in her high chair anymore. She would cry and say “down please mama, all done!” after only a few minutes of sitting. She was also not sitting in her carseat, in the bathtub or anywhere else! I noticed her on all fours or on her hands and shins all the time.
During her naps, I would lay on the floor beside her crib and cry and pray for wisdom and healing for my baby girl. I cannot tell you now
grieved my spirit was during all of this. I think I just knew there was something more serious lurking inside her precious body.  The doctors assured me it was all due to constipation which was probably being affected by the painful, infected pilonidal cyst.  They said she was most likely not pooping because of the pain from the cyst. Our hospital in Bishop is small and is not set up to do more serious types of procedures on children (surgical procedures requiring general anesthesia). My doctor did offer to refer us for a surgery consultation to see if they could drain the cyst, but I felt like we needed to take her where they were more experience specializing in pediatrics. If in fact she did have an infected cyst, surgery was the only option to get rid of it and I wanted her to be somewhere where they were able to give her the best care possible.
Los Angeles is a 5 hour drive from where we live so we jumped in the car and went right to Children’s Hospital Los Angeles (CHLA) Emergency Department. In my eyes, this was a very real emergency. Something was wrong with my Gia Joy. So we arrived at Children’s Hospital Los Angeles Emergency department Monday, December 17th at 7:00pm-ish. When we saw the doctors I explained everything. I went over her history, the behavior changes (crying all the time, screaming when pooping too, not sitting on her bottom…like ever, changing size and shape of “cyst”, etc), the fact that we drove 5 hours because I felt this was an emergency and she needed help. BUT…They didn’t do one test.  In fact, they treated me like I was a crazy person.  They stuck their fingers up her butt multiple times as Gia screamed in sheer horror and pain and they just said “oh she is uncomfortable” and only constipated. Hmmmm, how could they shove their fingers so far up there if she was “so constipated?” They just glanced at the thing on her back and concluded it was just a pilonidal cyst, was not painful, and that she would never have to have surgery – ever, unless it became infected. They gave us some more Miralax (which I had already been giving her) except they increased the dosage, and sent us home. My husband and I asked them several times if they were sure that that was all that was wrong. They assured this crazy mother that it was. Confused and frustrated, we left to drive back home the next day. Baby Gia was still not any better. The increased dose of Miralax they gave us was still not working. As soon as we got back home she just kept getting worse.
Now she was rarely, if ever, walking or sitting on her bottom. She was more and more miserable – crying on and off ALL DAY and ALL NIGHT. Exhaused, deeply troubled, angry, and confused I called my pediatrician daily, usually crying and asking what else we could do since nothing was helping her and she was not better, not pooping, and now not walking. Everyday she was regressing. She might perk up for an hour or two (by perk up I mean smile and show some small interest in a toy we would show her), but then would be miserable again not long after so any “improvements”were very short lived. I had my pediatrician make us an appointment with the Pediatric Surgery team at CHLA, but the soonest appointment they had was Jan. 3rd. I didn’t think we could wait that long.
Sunday, December 30th, I had been crying all day and I just knew something was not right. I took Gia to the ER in our small town because I didn’t know what else to do or where else to go. By this time, she had been seen by 6 doctors who all had the same consensus: constipation with pilonidal cyst. All they did was give her this laxative or that laxative.
No one ordered a simple blood test, urine test, CT scan, or MRI. Ever. I have many medically savvy family members (doctors and nurses) who all said get CT scan and MRI asap! I should have demanded those tests be done, but I didn’t. I trusted the doctors too much.  I called Gia’s pediatrician for the 100th time and told her we were at the ER in Bishop and that Gia was not better and we needed answers.  She came right over and consulted with the ER doctor.  They did a blood test, urine test, and 3 x-rays. She now had a fever and her x-rays showed she was STILL impacted – if not more imapacted than 2 weeks before. We were then air-lifted by Life Flight immediately (Gia and I in a tiny little airplane!) to CHLA and were admitted right away to the gastro-intestinal floor.
The most amazing pediatrician (Dr. Barber) came in to meet with me and get a case history. Finally someone was listening to me and
 taking my report and descriptions seriously. This doctor said she could not believe what all we had been through. She had the surgeons on-call come and look at Gia and they immediately ordered a CT scan. And that is when they saw the tumor, distended bladder, and bowel obstruction. The next day, Gia had an MRI so they could see more clearly where the tumor was.
We waited and waited to get the results. And then they told us. The results of the blood work and MRI revealed that Gia had a saccrococcygeal teratoma with yolk sac tumor. The imaging showed the cancer had spread to her lungs (tiny pieces) and to other locations on her spinal cord. The tumor was 9 cm and about the size of a large orange. It was obstructing her bladder (which was 5 times its normal size and fluid was backed up into her kidneys) and the tumor was also obstructing her colon, which is why she couldn’t poop. It was also wrapped around the nerves in the coccyx region of the tailbone affecting her ability to walk.
They told me this type of “yolk sac” or germ cell tumor occurs in the very early stages of development. As the cells are multiplying and differentiating in the first few weeks of embryonic development, a group of cells did not mature, but instead took on a life of their own and were now spreading. Happy new year to us. So there we sat. Our baby has cancer. They told us we had to start chemo immediately.
Let me just tell you, I did everything I could as a mom to protect her blood from the day she was born. No vaccines, organic everything (just about), no sugar, etc. She has only had a couple colds since birth, not one ear infection, and no antibiotics – except for what she was given to help the cyst. I struggled with the fact that I would now be poisoning my daughter with chemicals. There was no other option.
As I write this, my little Gia has undergone 5 days of chemotherapy. She is doing so amazingly well. The doctors here are experts in this type of tumor, and although it’s very rare, the treatment is very effective. They hope to kill all the malignant cells leaving behind the benign mass to be surgically removed. They are not sure how long this will take, but we will begin with 2-4 rounds of chemotherapy. I could write at least 10 more paragraphs about all that I am feeling and all that we are going through, but I don’t want to drag this post out even longer than it already is.
I wanted to let you all know that I will be focusing on my baby girl and getting her through treatment so there will most likely be a lot less posts. But I will be back soon. I know she is getting well! I have a very strong faith in God and I know He loves my little girl more than I do! He has a great plan and destiny for her life. We will continue to believe for her total and complete healing. Please pray for my little sweetheart!
My sister started a fundraising page for us where you can donate financially (as much or as little as you want) and I posted the link on the right side of the page. I will update you all on her progress over the next few months so check back.  While I’m at Ronald McDonald house with Gia, I may have some time to post more speech therapy materials – I love my blog, my followers, and my caseload of sweeties back home! I hope life will be back to normal very soon.
Until then, I’ll do my best keep you posted and to keep sharing new materials along the way. Thank you all for keeping us in your prayers!


  • Sharon says:

    My prayers are with your sweet little girl! Mother’s intuition should never be pushed aside – how frustrating! I am so glad you are on the right track…..

  • Leslie says:

    I am so sorry for what you had to go through. Keep us posted and hopefully 2013 will be a healthy year for your family.

  • Diane Powers says:

    How terrible-poor little Gia! My heart goes out to you-Thank God you were so persistent and that someone finally listened! A mom just always knows. Keep the faith. I’ll be praying for little Gia.

  • Lane says:

    You are an amazing mom for not giving up on figuring out what was going on, and for having a mother’s intuition that the first several doctors were wrong. Thank you for sharing this. I hope everything continues to go well with the chemotherapy.

  • I am so sorry to hear this. I wish you guys the best, and I will keep you in my thoughts! A friend of mine has a daughter who was diagnosed with cancer in her first few months. She will be five this year and currently has clean scans. If you ever want to get in touch with her for support, shoot me an email. In the meantime, DO NOT feel pressured to post–we want you to focus on you and your baby! Wishing you the best…

  • Laura says:

    Thanks for sharing your story. I’m so glad you finally got an answer. And speaking as someone who just finished chemo and taking most of the semester off, please focus on your baby and family. Everything else will come about. Wishing the best for the treatments to be successful.

  • Brenda says:

    So sorry that you had to go through all that! I had chills reading your story. My prayers and thoughts are with you and your family.

  • Heather H says:

    Heather, what a journey! I am praying for you and for Gia. May the chemo be quickly effective!

  • Shannon Giles says:

    Oh, Heather! I am so sorry your family is going through all of this. I am saying prayers for your little girl and your family. I won your giveaway and in your email message to me you mentioned that you got busy this past month! This is way more than busy…may things improve and blessings come your way. God Bless.

  • Cathleen says:

    I am so sorry for your long ordeal, trying to get correct medical infomation and help for your sweet baby girl. We lived through that kind of think many years ago….and you realize that you have to stand your ground and trust your instincts. I rarely took my infant or toddler into dr. office with sniffels, cough, teething,,,,,,it was always when a high fevor persisted or rash broke out. We tried to do the sensible things, but at some point a mother knows when she’s be “handled” as a new mom and she knows her child…..I am so happy you kept reachig out and finally got the help you need. Ipray for her and your family and hope the results are quick and good news. Please don’t feel pushed to write….but the minute you can take a deep breath….we will want some news on her health. Take care of yourself and rest when you can. Fondly, Cathleen

  • amy says:

    Heather, I am so sorry to hear the news of your little one’s health. I too have had somone in my family go through the trials that cancer brings. Lean on God during this time. He is the One who got me through the many circumstances my family had to face. You and your family will be in my prayers. God Bless!

  • Corine says:

    My thoughts and prayers are with you all and her caregivers. I have always been a believer in leaving no stone unturned; glad you remained strong and pushed for more help. Blessings to your little Gia.

  • Sharon Connor says:

    Heather, I can’t believe it! I feel so sad for you and your little one. It sounds like you are holding up very well. Please know you and Gia are in my heart and I’m sending you much love and healing. Sharon

  • Louise says:

    Bless you, Heather, for being such a loving, determined, observant mother to your little darling!! And, wow, what you have been through – I hope you can take some time for you to recoup and heal from this trauma!!! Louise
    P.S. prayers go out for you, your little one and whole family!

  • Jessica Griggs says:

    My thoughts and prayers are with you and your family.

  • Pearl Edmunds says:

    Dear Heather,
    I am new to your website, but stopped by to see what is new. Oh my goodness, I am so sorry to hear about this recent journey! I am very glad to hear, however, that you have a strong faith in our Lord and Saviour! Cling to him, as you always do and He will see you through!
    Prayers are with your little girl and your family.

  • Tracey Taylor says:

    My thoughts and prayers are with you and your family at this difficult time. Be strong for Gia and just know how much you are all thought of and loved.

  • Sonia says:

    I have only just discovered your website today and just want to say how kind and wonderful you are to be sharing so much with the wider community of parents and speech and language practitioners. I am so very sorry to hear about what’s happened to your little girl and I really pray that she will come through and you will all be able to return to your happy daily lives. Keep strong and all the very best x

  • Heather says:

    Thank you, everyone. I am so thankful for your kind words of encouragement and concern. It means so much to me.
    Lots of Love,

  • Shona says:

    I am so very sorry to hear of the dreadful time you have had with your daughter’s illness. It really goes to show that a mother’s intuition should definately be taken seriously. Your website has helped me through some difficult times with my 4 year old sons inability to speak and he is now on the road to being able to communicate with everyone around him. I can’t thank you enough!
    I can only hope that someone who has helped others as selflessly as you have will have some good fortune coming to you soon.
    My thoughts are with you and your family. All the best.

    • Heather says:

      I am so happy to hear that you were able to help your son! It is so amazing to be able to help moms out there work with their children. I consider it an honor. Great job, Mama!
      If you’d like to keep track of updates on Gia you can add the group on Facebook called “Gia Joy is Getting Well!”
      Love and hugs,

    • Heather says:

      Thank you! You are so sweet! xoxo

  • Debbie says:

    I just read you post regarding the horrible experience you had throughout the holiday season and New Year concerning the health of your baby girl. I do hope and pray that she is recuperating and will make a full recovery soon. May God bless you and your family.

  • Katrina says:

    Hi Heather! We follow you on instagram, & I am just now realizing what all your family has been through. I’m sorry I didn’t realize sooner. We will keep little Gia, and the rest of your family in our prayers as you go on this journey. God has control and he works all things for good!

    • Heather says:

      Hi Katrina!
      Yes, I believe that He can bring good out of what the enemy meant for evil in our lives! Thank you for believing with us and for your encouragement!
      Love and hugs,

  • Debbiejo Barnett says:

    Wow. I just found your website today as I searched for material to help me get started next fall as an untrained speech teacher at a small private school. Your detailed information and printables are so encouraging to me. Maybe I will be able to do this after all.
    Then, I found your personal info.
    As I read your post about all that you went through as you watched your daughter’s health declining, I kept thinking how you knew in your heart that there was something more serious going on. You knew not to give up. God doesn’t make mistakes. He knew you would keep pressing until you got the right answers. He knew Gia Joy needed YOU as her mom because you wouldn’t give up…not even when the professionals were telling you that your fears were basically unfounded.
    Gia Joy is so blessed to have you.
    That sick feeling that you had, that inner voice that kept speaking (maybe screaming) to you, the heaviness of heart…these are things that I am learning to pay close attention to as a mom and as a child of God. God speaking.
    I needed to find your post today to remind me to listen.
    I will be praying for you, your husband and your precious Gia Joy.

  • Kadian says:

    Hi, my name is Kadian and I have been following your updates on instagram for awhile. I was born and raised in Jamaica, I still live here. Oh how I have prayed for your baby girl and i’m am so thankful that she is healed. I’ll continue praying for her that she walks/live in her cancer FREE life forever! Many blessings, love and positivity coming to you from across the Caribbean Sea!

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