These notes are out of a journal I've kept since the beginning of this journey. They are a recap of the journey our family has been traveling for the past six months since we found out that our strong and stoic military man found out that he had a brain tumor. Sometimes it's hard for me to believe that our lives have changed so much in such a short amount of time. Some days it's hard to believe we've been traveling this road for over six months now. At times it helps me to look back at all that has happened so I can see how far we've come. Consider these my short-hand notes that I've jotted down over the last several months...they are what I call Craig's Tumor Timeline.
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August 7 - Today we found out that Craig has a BRAIN TUMOR the size of a softball. Doctors say is life-threatening if not removed quickly. We will have to leave Okinawa and fly to Hawaii where they'll peform the surgery to remove it. The look on Allyssa and Colby's faces when we told them broke my heart. Daziel is in the states visiting his dad. Killian lives with his mom in Georgia. My stomach was in knots as we spent hours calling each of them along with our immiediate families to tell them before we put the news out on facebook. Daziel cried. Killian sounded scared. Our families are all in disbeliefa nd wanting to help in any way they can. We've decided to share our story. We're asking for much needed prayers for peace on the journey and for Craig's healing. We also know that God has a plan to use this story and that He will be performaing miracles. I believe in that. We're both choosing to believe rather than to despair. Craig is being SO INCREDIBLY BRAVE! If he is able to be brave, how can I not?
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August 8 & 9 - The last two days we've packed clothes and homeschool books for a few months-ish (we are unsure how long we'll be gone or even IF we'll return). We've said many goodbyes to all the friends we've made in the three years we'd lived here, found a new home for our dog of 6 years - Nicholas (which was incredibly hard on our kiddos who have always loved their dog so very much), cleaned the house, got all legal paperwork in order after many visits to the legal office, had a handful of doctor's appointments for Craig, had appointments with the aerovac office that would send us on the medevac flight to Hawaii...didn't sleep much. (If at all.) We have so many friends helping us to pack, to cook, to make calls, to shower us with love and support. It's amazing!
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August 10 (Japanese time) - Finished all errands, packing, and figuring out logistics. Said the very last goodbyes to a handful of very close friends who drove us to the hospital for our flight. Flew a KC-135 MEDEVAC FLIGHT TO HAWAII to Tripler Army Medical Center. We left around 4pm in the afternoon. Craig was awake and mobile during the flight but seemed to be having hand twitches and things that made me nervous. Allyssa and Colby traveled well and slept a little. I was so nervous I felt sick. I couldn't sleep. I read the same paragraph in a book about 25 times before I decided to sit back and pray...and then pray some more. lt was so loud and horribly hot (and then incredibly cold) on that flight that praying was the only thing that brought me some comfort. I'm a nervous flyer, but that flight was the worst! I was nervous about so many different things which had nothing to do with the flying. I hope to never have to do that again.
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August 10 (Hawaii time) - landed in Hawaii at 6am and had a full day of appointments at Tripler Army Medical Center. We were exhausted after traveling and then went directly from the plane to the hospital via a medical transfer for appointments. After a long, exhausting day we drug ourselves and all our luggage out to the curb, called a taxi that took us to lodging at Hickam Air Base, and crashed. Hard! Best night's sleep since we found out about the tumor, for sure!
Aunt Angie bringing Daziel to us in Hawaii. He was supposed to fly home (to Okinawa) on the same day we ended up leaving there. I'm so happy that he had his loving Aunt, his cousin and Grandma by his side! He is used to flying on his own, but this is an emotional time. So glad he's surrounded by love!
August 11 to 19 - Lots of appointments. So many harsh realities during them. We were given a 75% success rate of the surgery due to the size of the tumor. If he does not have the surgery, though, there will be no success at all. The tumor is deadly. It has to be removed; it's huge. We have to trust in God's statistics. We were told Craig would most likely have to do chemo and radiation after the tumor resection. We've already met with those doctors. They all assume that the tumor is cancerous because of how large it is and how fast they assume it has grown. We've spent these days leading up to the surgery spending lots of good, quality family time together with Craig's dad and siser, Daziel, and my mom and oldest sister (along with her daughter and husband) who have flewn in to Hawaii for the surgery. I'm so happy that they were all able to fly here. We are SO blessed!! During these days family time is most important. Thank you, God, for blessing us with them and with so much love from people we love and people we don't even know. They are being your hands and feet here and now. We wouldn't be able to stand without them..without YOU!
(Picture taken by my sister as Craig was walking into the hospital for his surgery - holding Allyssa's hand. She posted this on facebook with the caption, "We have descended upon Tripler, prayer warriors UNITE!!!")
August 20 - day of Craig's TUMOR RESECTION SURGERY which lasted for nine hours. We all were at the hospital all day. I paced, I prayed, I rejoiced when it was done. Praise God! I was so thankful for all the family there to help with the kids. They actually have good memories of their day in the waiting room. Craig's optical nerve was intertwined through his tumor and there was risk that he'd lose his eyesight. The entire tumor was removed. The surgery was a success! It doesn't look like there was optical nerve damage, but we'll know for certain once he wakes up and can see. Once it was removed, the tumor did not look cancerous after all; it will be sent for pathology for confirmation. I got to go in and see him along with Craig's sister and dad. His head was bandaged, he was on a breathing machine with tubes going down his throat and so many things hooked up to him, his whole body was swollen...and I was not prepared for what I saw. I decided then that the kids would need to wait a few days before seeing him.
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August 21 - Craig is not waking up from his surgery. We were not given a length of time that he would be asleep. His brain had just undergone massive trauma, so they say it's not unusual that he'll sleep for a few days.
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August 22 - Craig is still not awake. He is having setbacks. His brain is swelling and does not like the assault of the surgery, which is considred a Tramatic Brain Injury. His brain is beginning to herniate at his brain stem, which is a deadly side effect from intracranial pressure. This day was the SCARIEST day of my life! They did a MINOR SURGERY (decompressive EVD) to relieve pressure and allow room for his brain to swell without causing irrevocable damage. It seemed to work. Craig will need time to wake up and recover. He is also losing his blood for no apparent reason. He has a very rare blood type so the doctor's had to put a call out to collect it before things get scary with his loss of blood.
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August 24 - Colby wanted to go in and see Craig today. He has been asking each day and patiently waiting. It was emotional, but I know it's what this boy needed. (Daziel and Allyssa are waiting, they aren'tready.)
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August 24 - Craig's brain continues to swell unexpectedly. They thought the swelling would go down after surgery, not continue to get worse. They did an EMERGENCY CRANIECTOMY today to remove his forehead bone and the skull bone on the left side of his head. This will allow even more room for his brain to swell without damage. The bones will be put back in at a later date. Colby wanted to go in and see him after his surgery. He has been asking each day and patiently waiting. It was emotional, but I know it's what this boy needed. (Daz and Allyssa did not go in, they weren't ready.)
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August 25 - Craig remains in the ICU...sleeping. He is able to give us a toe wiggle or a hand squeeze every once in a while on command. And then sometimes, he doesn't. When he's not able to it scares me. He does not require pain meds. They check his neuro status hourly to make sure his brain is not herniating again. He is no longer losing as much blood. Killian flew in today. He's so tall!! It warms my heart that he came! We've missed him so much! (Note: Craig remained in the ICU the rest of the time we were in Hawaii.)
August 26 - Today is Colby's 10th Birthday. He said he doesn't want any gifts, he has just been praying for his daddy to wake up. He said there is no better birthday gift. It didn't happen. We had a long talk about unanswered prayers. Sweet boy, he understands God's will and that daddy needs more rest. All of my children are needing lots of love. I am so grateful that we have family here to give that to them. We expected Craig to wake up much quicker than this. We don't know why it's taking so long, only that his body must need the rest and his brain needs time to heal. This unknown is so incredibly hard. I'm so glad we have family here to celebrate with us. We also have friends that we met in Okinawa that now live here; Joe and Liza. They helped us decorate and Liza baked Colby's cake. We are so blessed!
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August 27 - Allyssa and I were in visiting Craig. He squeezed her hand. Thank you, Lord! The other kids went in to see him too. He is not waking up, but we believe that talking to him lets him know we're here and brings him comfort.
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September 1 - Craig was extubated and had a tracheostomy put in and a PEG tube in his stomach for his feeding. I'm so glad he no longer has tubes going in his mouth and down his throat. The trach is not easy to look at either, but it's better than those.
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September 6 - Slowly over the last few weeks all of our family has had to leave, needing to go back to jobs. It was so hard on each of them to leave while Craig will still not awake. My mom stayed the until yesterday. One of best friend's, Janna, flies in today from Alabama to help me with the kids. What an awesome friend!! God keeps showering us with blessings!!
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September 10 - CRAIG WOKE UP, finally!! My heart could not be happier! He was able to give thumbs up and hand squeezes to communicate. He was awake for about an hour. Now that he's awake we will be flying ot the states for Inpatient Rehab. What he needs for rehab is not available here in Hawaii. The University of Washingotn in Seattle is where we'll be headed after lots of prayer to make a decision. I chose Washington because it's highly ranked and so we'll be closer to family; I'm going to need help and support. We'll be flying there on Friday. I'll fly with Craig on a medevac flight and Janna will fly on a commercial flight with the kids.
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September 13 - Today is Allyssa's 13th Birthday. I had plans of a special day for her as she's becoming a teenager. Those plans had to change. We found out at 10am that the medevac flight we thought we'd be on tomorrow was cancelled and they are putting together a crew to fly Craig now. We can't take the kids. We had to make a decision quick. CRAIG AND I ARE LEAVING Hawaii and flying first to California, then to Seattle. That's how they have to route Craig. Janna is going to stay in Hawaii and fly the kids to Seattle on Friday as planned. Craig and I should get to Seattle on the 15th too. He's still not awake much, he'll be on a stretcher during the flights. Allyssa is very willing to postpone her birthday celebration. I know Janna will make the day special for her along with the help of Joe and Liza. Allyssa made such a grownup decision to transition her to her teenaged years. I'm so proud of her!
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September 15 - We've all made it to Seattle safely. Craig and I had to first fly to Travis AFB in California where we stayed a night. We flew another KC-135 from Hawaii to California. Again, the KC-135 was a miserable flight. I'm so glad that Craig did well, though! We then flew in a private air ambulance (a nice jet, I was so grateful) from Californai to Seattle. I was happy for that flight (to be out of KC-135's) and excited when I started seeing familiar mountains. Craig slept almost the whole time. We were driven from the airport to the hospital in an ambulance and Craig was admitted directly to Inpatient Rehab. The kids and I will be staying at the Seattle Cancer Care Alliance House until we get orders here to McChord Air Force Base. Then we'll rent a house. We know we won't be returning to Japan. The military will ship all of our household items to us here. It's weird to think we won't be going back.
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September 28 - Found out Craig has PNEUMONIA so he was moved to an acute care wing of the Hospital where they put a tube into his chest to drain the fluids out of his lungs.
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October 2 - My dear friend Janna left today. I was so blessed to have her help for so long! Found out Craig has a COLLAPSED LUNG on top of the pneumonia and that he'll have to have a surgery.
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October 3 - Craig had a LUNG SURGERY today because of empyema in the right lung. We thought it would be a simple surgery through the drainage tube site, but they found much more damage and had to cut him open and spend 5 hours repairing his lung. Another scary day. Craig was so weak and tired. The surgery was successful.
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October 5 - Craig was able to sit up in his chair for 2 hours today.
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October 18 - Craig has stayed in the acute care wing resting most of the time -- recovering from surgery and the pneumonia. A small CSF leak was found in his brain and a surgery was attempted to stop the leak. It didn't work. Over the last weeks he's had two spinal taps to help with finding the leak. They were both very painful. We're waiting a week to see if his body will heal the leek itself before making plans for the other option (a more invasive surgery). Where he is misisng his bone flap, it is very sunken because of the loss of CSF.
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October 26 - An endoscopic procedure showed that Craig's body healed the CSF leak on it's own; no other procedure was necessary. We are so thankful for this miracle!
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November 6 - Craig has been making SO much progress!! He's been communicating with us much more through hand signs, movements, and faintly spoken words like "water", "yes", "no" and the words that brought us all to tears... telling the kids "I love you too".
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November 7 - Craig was moved from the hopsital at the UW to an acute care hospital - Kindred. He cannot return to Inpatient Rehab right now because he's not strong enoug. The pneumonia and the CSF leak gave him quite a setback and hish body has been through so much! He needs more time to rest and to regain strength.
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November 15 - The kids and I moved out of The Seattle Cancer Care Alliance House and into a rental house in Seattle
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November 18 - Craig is TALKING. Small words. Slow. Hard to understand. But he is finally TALKING!!
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November 23 - Craig had his trach removed -- partial food diet is up next. (next week)
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November 29 - Craig had TWO firsts today. Stood (with lots of help) and ate a mandarin orange (first solid food). We are ecstatic!
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December 3 - Tomorrow is our 14th anniversary and he gave me a wonderful gift! He called me by my name. He said "Charity". (Since he's been talking he's been calling me Tracey, his sister's name.)
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December 6 - Craig is able to eat all his meals (thick fluids and soft foods).
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December 9 - With assistance from his physical therapist, Craig walked the length of the parallel bars three times!
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December 10 - They were going to move Craig back to the UW for Inpatient Rehab today. Then one of the rehab doctor's discovered that Craig's hasn't had the surgery (cranioplasty) to put the bones back in his head yet. They want us to wait until after that surgery before accepting him back so he'll have the best outcome for optimal rehabilitation. He'll be staying at Kindred now until the prosthetic skull implants are ready and he can have the surgery to have them replaced. Today he sat at the edge of his bed without assistance.
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December 18 - Craig is eating a regular diet. He is loving having normal food!!
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December 22 - Killian is here for Christmas vacation - YAY!! :) Craig is so happy to have him here! Craig doesn't remember Killian's visit to Hawaii since he was sleeping the entire time, so he is especially happy!
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December 24 - Craig got his I.V. taken out permanently. We were able to take him in a wheelchair for a walk outside. He loved it!
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December 25 - We had a low-key Christmas with all four of our kids and my mom. Even though Craig was still in the hospital, we all got to be together - and that was perfect.
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Januray 7 - Today is Craig's 38th Birthday. We went over to the UW (via a fun ambulance ride ;) for some pre-op appointments for the upcoming cranioplasty. We know that the surgery will be in about a month because the original implants that were made need some adjustments. Glad the surgeon is making sure they're right before implanting them.
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January 21 - Movers came today with our things from Japan. We've waited for it for months. Now I'm surrounded by mountains of boxes. We're so happy to finally have our things, we've been living out of suitcases for five months.
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February 6 - I got a call that the hospital has finally finished Craig's prosthetic skull implants. He finally has a surgery day scheduled for Feb. 13th. SO excited! He will recover from surgery and then return to Inpatient Rehab afterwards. We are so happy to be moving forward!
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February 11 - Craig had an MRI to prepare for his upcoming surgery. The MRI found a small amount of tumor in the old tumor sight. They are unsure if it's new growth or left over from the first tumor. It's likely residual - from the old tumor. They will still proceed with the surgery on the 13th. The small mass they saw is not large enough for a resection. Craig will likely need radiation down the road for this, but getting him through rehab is most important right now. His body and brain need to recover from the trauma before they're assaulted again. We'll keep an eye on it and watch for more growth and decide as we know more. All I can do is sigh and take a deep breath, then say... Jesus, we trust in you!
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February 13 - Craig had his surgery (cranioplasty) - the synthetic bone implants were placed in his head. The surgery was very succesful and did not take nearly as long as we thought it would, what a relief!
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February 15 - Craig's already back in Inpatient Rehab - quick progress - so happy!
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March 2 - Craig has been doing fabulous in rehab! He's walking with a walker, can walk up and down a flight of stairs, is using the restroom, and is going to be discharged from the hospital on Friday the 8th. We are beyond excited!! :)
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March 8 - Craig get's discharged from the hospital today. The day we've been waiting on for six and a half months, Praise God!