Monday, November 2, 2015

So Blessed and Thankful!

For those of you that have followed my blog over the past 7 years, you have not doubt noticed that I have been absent for the past 14 months. My last post was an update on Lizzy's wedding and the announcement that my Mother has cancer. After that I just fell off the grid. 
This post is an attempt to fill in the gaps and hopefully bring you some hope and encouragement. It's gonna be a long one so grab a snack and a drink. 

My friends here know who Monkey is - she has been the subject of many of my blog posts. But for those of you just popping in, she is my beautiful granddaughter. Monkey was a happy and healthy seven year old little girl until the first of the 2014-15 school year. She started her 2nd grade school year off with a fresh new hair cut; she cut 14" of her hair off to donate to Locks of Love so that little kids with cancer could have hair to wear to school. This was all her idea and we were so proud of her selflessness. Little did we know that in a few months she would be one of those little kids!

As the school year progressed she started having headaches and my heart broke for her. I have had migraines since 3rd grade and I hated to think of her suffering through that. There were other seemingly unrelated health issues too. Her parents took her to the doctor and nothing was found. By March of 2015 her problems were getting worse and worse and she had seen so many specialists and had been in and out of emergency rooms and urgent care facilities. Our once happy and healthy little girl was now fearful, angry and in so much pain. The doctors had one theory after another, all of which were proven wrong after each new test. 

Finally, I think the doctors, in their own desperation for an answer chalked it up to her being depressed and unable to express herself and suggested she see a child psychologist. In essence "it was all in her head". But this answer didn't explain the headaches, the vomiting, and the falling down, her eyes shifting and sticking to one side and the double vision, the random body pains. None of us thought this was what was wrong with Monkey but we set out to find someone we would feel safe with. After all, nothing else was working and we needed her to be well.

Our prayers at this point changed from "make her better" and became "just give us an answer, any answer". On April 02, 2015 my prayers were desperate not only for Monkey but for my daughter. I of course asked for healing and answers, but I also asked for His peace and strength and endurance and mostly for His presence no matter what laid before us. I also asked that He would use us to show others what His peace and love and presence looked like. This was a big prayer and a bold one and the in less than 2 days we would see Him start to work in a Big and Bold way!

On April 4th our prayers would be answered, but not in the way we had hoped.  April 4th was the day before Easter and we decided to celebrate early since Monkey did not have the stamina to do both church and an Easter egg hunt in one day. After a few minutes hunting eggs she was exhausted and her eyes were doing that "sticking" thing they did, she wanted to go inside and lay down. In the past couple weeks lying on the cold tile floor became some sort of comfort to her. We had lunch and she tried to eat. 

After lunch, in a last ditch effort to try to get some answers my daughter took her to an eye doctor at Nationwide Vision Center, and there the eye doctor found what none of the specialist had been able to find for months! Monkey had something in her head that was causing pressure and not letting her be able to drain her brain fluid and she was hydrocephalic! She was rushed from there to Phoenix Children's Hospital where our questions were finally answered and our worst fears were realized!

Nothing prepares you for your Son-in-Law to call you and tell you that they are admitting your beautiful granddaughter into the PICU. You become split in two - a mother terrified for her daughter and an Amma terrified for her granddaughter! As I drove to the hospital I called everyone I knew that would pray, and I tried to pray myself. It seemed to take forever to get to my girls! It was so surreal when I arrived and saw this sweet girl lying in that hospital bed hooked to monitors etc. She gave me a little smile when I came in and I was trying my hardest to give her a confident smile back. But then I looked at my daughter, her eyes red and swollen and full of worry - what would I say to comfort and reassure her? 

Shortly after I arrived we were brought out into the hall and shown her CAT scan images - and there it was - an "unknown" mass at the bottom of her brain! Tonight we would just have to wait and wait some more. No one but Monkey slept, we just waited. As I watched both of my girls, both of them so scared, I never have felt so helpless! 

I watched out Monkey's big picture window for the sun to rise and and for the hope of better news to come with the morning light. It was Easter, no frilly dresses or church services. Instead there would be an MRI and she would also have an EVD (external ventricular drain) inserted into her brain because this "unknown" mass was not allowing her brain to drain. The EVD was first, we took turns holding her hands and reassuring her as she begged us not to let them do this to her. Finally it was time to go and fear like I had never experienced before washed over me. The room was so big and empty without her and her parents in it. I had no idea at this point how often that room would be empty! I remember just getting on my knees and praying - I have no idea what I prayed for - I just needed my Daddy to be with me! 

Soon enough she was back. Her hair was in several messy braids that the surgeon had done and on the right side of her head was a reddish coil of tubing connected to some clear tubing which was connected to a receptacle that collected her brain fluid. After a while they came to get her again for her MRI. Although not fun, an MRI is no big deal for us, but for a seven year old it means you are sedated. Once again there was the empty room. Once she was back in her room and sleeping, I talked Bryanna into going downstairs to get something to eat. This would be the first and last time that Bryanna would go outside for two weeks.

The next day would be even more awful. Monkey would once again be sedated and have a PET scan. But worst of all would be when the surgeon read all of the scans and gave us the results. My Son-in-Law had to run home to get some things and so it was just Bryanna and me with Monkey. As I sat in that tiny room with my daughter and the surgeon I couldn't believe what I was hearing! The tumor is in her brain stem and it didn't look good. They would not know what kind of tumor it was until they got it out but she gave us very little hope that my beautiful granddaughter would ever live a normal and satisfying life. She may not even live! No mother should ever have to sit with their daughter and hear such news about their granddaughter. I could do nothing but try to hold it together for her and be there. But more than that, no mother should ever have to hear that news about their own child! When I got Bryanna settled in with Monkey I excused myself and had a huge breakdown! I found myself outside weeping like I never have before. But soon I found myself in the arms of my Daddy! These arms came in the form of a huge black man named Anthony! He was a security guard at PCH and he found me huddled in a corner and stopped to see what he could do. He stood right there and prayed with me and gave me that physical touch we so often what from God! This would just be one of the many times that God would show up through Anthony and also one of the many, many times that God would just show up!

This was a long day. Surgery was set for the next morning and the waiting was awful. My Son-in-Law was afraid that Monkey would not make it and he wanted everyone to come and see Monkey. The whole family came down to see Monkey and she wanted nothing to do with visiting. But her father insisted that she accept visitors, especially her little sister. He was so afraid this would be the last time that his family would all be together!

The next day her surgery kept getting pushed back. The waiting was torture, especially for Monkey, she begged and pleaded again for us not to let them do this to her. Luckily the therapy dogs were in the hospital that day and I begged to have them brought into her while she waited. 

Finally at 10:30am they took her in and the clock was evil - it seemed to go slower than ever before. But the worst part for me was watching my own daughter suffer. To see her completely shut down and close herself off from everyone - including me. She could not be comforted. At 5:30pm the surgeon came out - GOOD NEWS! All went well, better than expected! I saw hope restored in my daughter's face. It was a rough night. Monkey was on a respirator and connected to every kind of monitor, tubing and IV you can imagine. The next day was another long one. She was in pain and very scared and agitated. At one point she looked at me and said "Amma, quit praying for me. I want to go to heaven and be with Jesus. I don't want to fight anymore." Those words were both a blessing to me and my biggest fear all rolled up together! No! You cannot leave us - I thought. And then I realized something so much deeper and more beautiful in her words. . . SHE knew Jesus! He was not just something we told her about. He was not just Bible stories and Sunday school songs! She knew HIM and she trusted HIM and she knew she would be with HIM when it was time for her to leave this body!!!

The second day after surgery was a busy one. She had some of the tubes and IV's removed, but had an NG tube put in to feed her with. They sat her up in a chair and she even ate a couple goldfish crackers and some applesauce. This would be the first food she had eaten since she arrived at the hospital 5 days before!  

That night Bryanna and my SIL were so tired they both feel asleep and I stayed up with Monkey all night (we typically took shifts). We started off our night with some sprite, goldfish and cheese and Maleficent (the movie) and then we worked on some bead crafts. Her little hands didn't work very well so she was the designer and I was the labor. She "made" one for her sister, her Mom and for me. I never took mine off until it finally broke a couple months later. It was one of the most precious nights of my life!

The next couple of days were up and down. But on the 13th she was sedated for another MRI, after which they decided that she would have to have a permanent shunt put in. Even after the surgery she still could not regulate her pressure on her own or drain her brain fluids.

Two days later she was moved out of the PICU to a regular floor and two days after that she was given a walker so she could have a bit of independence and mobility. And on the 18th at 5:00pm she was released to come home! It had been exactly two weeks. But it's not like we came home and everything was over and back to normal. Far from it. 

Now came almost daily doctor visits, oncologists, brain surgeons, and even the pediatrician. We even ended back in PCH emergency room for a little scare but all was fine.  We were also forced to learn a whole new vocabulary. We learned words and terms that we never thought we would need to know. Like this word - Ganglioglioma! This was what Monkey's tumor was called. It is a rare type of tumor. Only 1 - 2% of brain tumors in the United States are gangliogliomas. The prognosis is excellent when they can be surgically removed. We learned a lot about anatomy as well. Monkey's tumor was in her brain stem, which we learned was considered "prime real-estate". This meant that her tumor was only able to be partially removed surgically because the risk was too great to remove it completely. The brain stem controls all of our vital functions.
This is a 3-d copy of Monkey's tumor that they gave us in the hospital. It is the exact size and shape, just the color is not accurate

Next on our list was an appointment at Mayo Clinic with their pediatric radiation specialist. The doctor at Mayo was just the beginning of another journey - this one would be a "real journey" that would take us to California for 2½ months! He did not feel that traditional radiation was the best course of treatment for Monkey. He pretty much told us it would do more harm than good. But after that sucker punch he told us about proton therapy and he felt that would have much better results long term for her. Before we left his office he contacted the doctors at Scripps Proton Therapy Center in San Diego and as we were driving home they called us and we had our appointment set for our consultation!
The next two weeks would be busy, trying to find a place to live in California for that long for us two women, Vittoria and her little sister. Oh and let's not forget the dog. There was also the turn-around trip for the consultation, packing and of course dealing with a mountain of paperwork. We also got the news that MIL also had cancer! 
Bryanna and I knew without a doubt that God had lead us directly to Scripps and Dr Chang. During our consult with him he shared with us that he was a Christian and asked if he could pray with Monkey. I have never seen a doctor do that! That man got on his knees next to her and laid his hands on her and asked God to work through him to heal her as only Jehovah Rapha could! We were in tears and once again we saw the hands of God reaching down from heaven to comfort and reassure us!!!

On May 16th we left for a whole new way of life in California. Monkey had to go to Scripps for treatments 5 days a week. She had a PIC line that had to be tended to several times a day and she had to fast each day from 8:30am until about 5:30pm. We all fasted with her. She would be sedated each day for her treatment, which she hated and was the hardest part. She lost most of her hair in the back between her ears , but thankfully she has a ton of hair like me and her Mom sh you really couldn't tell. On the weekends we tried to have some fun. Her Papa and Grandpa came every weekend and we tried to do kid friendly stuff during that time.

Finally this part of our journey would be over and we got to head home on July 26th to start our "new normal" life.

Monkey celebrated her 8th birthday a week after we got home and a week later she started back to school. She is in the third grade now. If you saw her on the street you would never know how sick she has been. And like I have said to my husband several times, this is a blessing and a curse. It is easy to get lost in the fantasy that she is perfectly healthy, but it also gives you the chance to escape the dreadful reality of how sick she has been.

My Monkey is very blessed! She has had amazing doctors and nurses to take care of her. She has had a group of prayer warriors all around the world that have bathed her in prayer. And she has had kind and generous people that have surrounded her and her family with every kind of support you can imagine. Now we wait, something we have all gotten experienced at doing. We wait for each MRI report to be read (she will have them every 3 months for the next year or so, then every 6 months and then once a year for the rest of her life). We wait to see if she will experience any of the possible long-term side effects from the proton therapy. 
We wait to see what amazing things God has in store for her to do with the rest of her life!

If you stuck around this far I thank you for hearing our story and how God has taken what the devil meant to harm us and has turned to good! 
You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives. - Gen 50:20

He is faithful and loving beyond compare! Trust Him with your deepest hurts and troubles. He is right there waiting to help you and love you through it all!
The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged." - Deut 31:8

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