Good news!

Hunter and I both had Dr visits this week and overall,  things are looking up.  My surgery was a success and they feel confident that they got all the cancer!  Wahoo!!!  The surgeon also said that there is a chance that I might not have to have radiation therapy.  I won't know for sure until I meet with the radiologist on Nov. 5th to discuss the pathology report and get his recommendation.  I will also be meeting with the oncologist to discuss the hormone therapy.  I don't have that appointment scheduled yet.  Overall, I feel better than I expected, all things considered,  and I know I am being blessed.  Hunters appointment went well, also.  We visited with his Dr. for about an hour and were able to ask questions and had a good discussion.  We seem to be on the same page about how to approach his care and that is comforting.  I have been concerned about jumping into a steroid treatment, and his Dr is being very cautious about that as well.  There is more evidence that points toward the systemic rheumatoid arthritis.  However, there is a form of the disease that lasts several months and then goes away.  We are all hoping that is the case with Hunter.  Some of his labs have improved, and the others seem about the same.  The Naproxen is doing a good job of controlling his fever and though it makes him itchy, he is feeling better.  So, for now, we have agreed to stay the course and watch what happens.  He will continue to have regular appointments and blood work to monitor his levels.  If his levels get worse, then we will have to get more aggressive with his treatment.  He is on "home and hospital" for now as he doesn't have the strength to make it through a day of school yet.  He is still anemic and gets tired easily.  He is in good spirits and has really been a trooper.  He got to pass the sacrament for the first time today.  He said it was fun.  We feel overwhelmed by the many blessing we are receiving and the love and support of all our family and friends!  Thank you SO much!!!!  God bless!

From Tiffany

The following is a message direct from Tiffany that she asked me to post:

Good morning everyone! I just wanted o let you all know how incredibly grateful I am for all the love and prayers sent our way these last few weeks, and for the countless acts of service revered in our behalf. The visits, the meals, the cleaning, the laundry, the yard work, playtime with Hunter (which he loves, by the way), the thoughts and prayers have been such a blessing and we feel overwhelmed by all the blessings we are receiving! Our family is truly blessed to have such a strong support group of family and friends! We couldn't have made it this far without you! We feel our Savior's love and many of you have been his hands and have helped lift us up when the burden seemed too heavy to bear. Thank you SO much for all you have done! May the Lord send many blessings your way! We love you all, dearly!

-Tiffany

Hunter Update

Mark and Hunter met with  the Rheumatologist this afternoon. The test for Vasculitis came back negative, and they are going to have another case conference with all the doctors after the latest findings on recent tests. They are leaning towards a juvenile systemic arthritis. They had to discharge Hunter early because of Insurance issues, so they weren't able to tie things up as they usually do.

Right now they are treating Hunter with a prescription anti-inflammatory drug, and we're supposed to monitor how he does. We also have to monitor his temperature regularly. We are unsure of when his next appointment will be. They will probably call and schedule that once they meet with all the doctors.

Post-Op Update

Tiffany's surgery went well yesterday. They got to the hospital at 8:30, and in to mammography around 9:00 am to have the guide wire placed (Which was NOT fun). That took about an hour. Her IV also hurt a lot going in, and it didn't really feel right, but fluids were flowing, so they kept it.  They gave her some pre-anesthesia medication, which made her start to feel a little loopy even though they said it shouldn't. Tiffany was finally wheeled into surgery sometime between 12:30 - 1:00 pm. The surgeon said everything went well, and they didn't have to remove very much tissue. We should get results from pathology in about a week.

Tiffany was very sleepy from the anesthesia, and it took a while before they could leave the hospital. Even then, it wasn't wearing off as fast as it normally does. This wasn't surprising as Tiffany's system tends to be quite sensitive to such things. The medication had made her so loopy that the dizziness was making her extremely nauseous, but she has been able to keep everything down. Her IV site was also very painful, and she is going to have some pretty bruising from it. Today she is pretty sore, and still a little dizzy, but she can walk around without assistance now. She's trying to rest as much as possible, and we hope the rest of the dizziness will subside by the end of the day. Tiffany has a follow-up appointment on Friday the 24th. That's when we'll know the plan going forward. Until then, it's rest and recuperation.

As for Hunter, he has been doing well. He has been able to keep his fevers low grade, and he was in high spirits yesterday. Our big focus is to keep him drinking fluids so he doesn't have to have another IV, or be readmitted. I don't have a lot of information regarding his latest labs, but he is at a Dr.'s appointment right now up at the hospital with Mark. Once they get home, I will post an update with what they discussed. Hopefully we will have some answers soon.

Thanks again for all the prayers and concern on our family's behalf.

Hunter is Home!!!

Yesterday was quite a roller coaster kind of day. On Sunday, Hunter's fever had not returned (the longest he had gone without a fever in 5 weeks), so there was talk of sending him home if the Monday morning labs and biopsy results checked out. However, his fever returned yesterday. It was a low grade fever, but the pathology report came back non specific, and his white count is still high. The Dr. that will continue to follow the case had a couple of ideas and wanted to run more labs, so they said he would have to stay in the hospital. Hunter's poor veins! THEN.., around 4:30, they decided to send Hunter home, and any further treatment will be outpatient unless he gets worse again.

SHEESH!

Jessica and I pulled together some dinner, hung some balloons, and our wonderful neighbor, Rochelle, helped with a Welcome Home sign on the garage.

Hunter and Tiffany were pretty tired, and a little overwhelmed with everything, but were happy to finally be home. Hunter will continue go in for labs and checkups until we can get him better. We feel incredibly blessed that Hunter came home without having to deal with a cancer diagnosis.

Our focus today is to prepare for Tiffany's surgery tomorrow. Please continue to pray for her, and that the surgery will go as well as possible in the morning. Thank you to everyone who has helped us so far!

Holding Pattern, and Fasting

Hunter's surgery went well on Friday. The Surgeon said it doesn't really look like Crohn's, but we will have to wait for the results of the biopsy before we know for sure. They might be back to the drawing board... Again. However, Hunter has made it through today without a fever yet. Let's hope he can make it through the night as well. Everything is on hold until Monday when they hopefully will have the biopsy results back.

For anyone who is interested, We are holding a large family fast tomorrow (Sunday, October 12, 2014). We will be fasting for Tiffany that her surgery will go well this week as well as her upcoming treatment, Hunter that the doctors will be able to find out what is ailing him, and Mark that things can go well with his work. We plan to pray and break our fast at 5:00 p.m. Anyone is welcome to join in this fast with us.

Also, an account has been set up for anyone who would like to donate money to help with the large medical bills that will be coming. You can visit Gofundme.com/markcrapofamily if this is something you are interested in.

We appreciate every one's love and support thus far. We know that we are in for a long and hard journey, and we are so grateful for the wonderful people who are with us to keep us going. We love you all.

MRI Results

The results of Hunter's MRI show inflammation of the small intestine just above the colon. This moves Crohn's disease to the top of the list. They are also looking at rheumatic fever because something came back elevated in one of the blood tests to suggest that possibility. In an attempt to verify Crohn's, Hunter is having a colonoscopy tomorrow morning. While he is out, they will also scope his stomach as well as get a liver biopsy. His liver enzymes have been elevated throughout this illness, so they are covering the bases. Hopefully this will give us all the answers we are looking for. Hunter has started his first round of fluids for his colon prep... aka rocket juice. Anyone who has had a colonoscopy knows what that means. It's going to be a fun night!

We Can Do Hard Things

Welcome to our new family blog!

We are hoping to alleviate much stress, anxiety, and questions by keeping everyone informed about Mom (Tiffany) and Hunter through these posts. We are so very grateful for the outpouring of love and support from everyone, and we know that you all want to stay updated on what is happening. We will try to keep this updated as much as possible, and hope that you will also be patient with us as we get things up and running. I don't know if everyone is aware of all of the crazy things that have happened over the past month, so I will give a brief(ish) overview of what has been happening. I know that I won't possibly be able to give all of the details, and some information may be missing. But it will give you enough information to know what is going on. 

• August 27, 2014 - Hunter's 12th Birthday. Happy Birthday!!!
• Sept. 5th - Tiffany had her 1st Mammogram (was called to schedule a followup mammogram)
• Friday, Sept. 6th - Hunter Got sick
• Monday Sept. 8th - Tiffany took Hunter to the Dr, they were told he just had a virus.
• Friday Sept. 12th - Tiffany took Hunter back to the Dr, and they started him on an Antibiotic. It didn't work. He started throwing up. After 4 days of not getting better, and throwing up, Tiffany took him off the antibiotic.
• September 17th (ish?) - Tiffany's followup Mammogram, during which she was told they needed to get a biopsy from a mass in her left breast.
• Friday September 19th - Dr. Daynes (family Dr.) called Tiffany to follow up on the news he had received after her 2nd mammogram. Tiffany told the Dr. Hunter was still not getting better, and she was told if he wasn't better by Monday, to take him back in.
• Monday September 22nd (2 weeks since Hunter got sick) - Tiffany took Hunter back to the Dr. where they did some blood work, a chest x-ray, and urine sample. The X-ray came back fine, and the urine sample showed dehydrated.
• Tuesday September 23rd - Tiffany's Biopsy went well, the Dr. said they got a good sample. Tiffany hadn't been home for even an hour when they received a call to take Hunter up to Primary Children's Medical Center. They were admitting him. Hie blood work had come back and his white blood cell count was through the roof. Normal is supposed to be around 4? Hunter's was in the 40's. They were initially sending him to be tested for things like Leukemia.

The following are mostly texts from Tiffany:

• 6:17 p.m. -"They are concerned about weakness on his left side. Going for a CAT scan to check his brain for infection or tumor, then running labs for blood infection or leukemia. Also x-raying leg to look for bone infection." 
• 9:57 p m - "Results of CAT scan are negative. No large masses. Having an MRI tomorrow to take a closer look. They want to be certain that the weakness on the left side isn't neurological. After a bag of saline and dinner, he has perked up. Thank you for all the prayers!"
• Wednesday, September 24th
• 12:03 p.m. - "Just saw the Doctors. Hunter's white count has dropped significantly; A promising indicator that it isn't leukemia, but still leaves plenty on the table. Had MRI, results later today. Looking for tumor, infection, or possible small stroke. All possibilities of the left side weaknesses. Doing more blood work also. Negative on Enterovirus that's been in the news, so at this point, they are thinking he is not contagious. Sooo... still a lot of unanswered questions. They anticipate at least another day or two to narrow it down. MRI is a biggy. If it's clear, we get to check several things off the list. Pray for that! In a nutshell, the 3 things they are still considering are infection, cancer, or immune disorder. Hunter is, of course, scared, but is in fairly good spirits and seems to be feeling better today. Love you all!"
• 1:42 p.m. - "MRI is clean! No tumors of infection there. That's good news! The mystery Continues."
• Thursday, September 25th -"Good morning all, not much to report. They mystery continues. Mono was negative, he has abnormal liver and feratin levels (iron) and anemia. They are checking for a disease called HLH. White cells attack red. It is in the cancer family. More blood tests needed. Also doing heart ultrasound today to rule out Kawasaki disease. So, in other words, still more questions than answers. White count was down a little today again. He is a medical mystery. Pray that they can figure this out! Thank you for all the prayers and concern. Hopefully we will have more answers soon." (Cancer specialists later came in and said they didn't think they were dealing with cancer)
• Friday, September 26th - "Not a lot to report. Still looking for cause. The search has narrowed some. Some of the bacteria tests came back negative, but still nothing definitive. There are some results that we are waiting for that won't come until next week. He was doing really well yesterday and there was talk of letting us go home today, but then he spiked a fever again last night and he's not doing as well today, so we're not going home today. We are all doing our best to hang in there. We appreciate all your love and prayers."
• Monday, September 29th - Tiffany received a call in the morning from the Dr.'s office confirming that Tiffany has cancer.
• Tuesday, September 30th - "Okay folks, here is the long awaited update. Tighten your seat belts! First... good news... I met with the nurse over my case today and my prognosis is good. I will meet with the surgeon on Friday. The cancer is still confined to the duct, and hasn't spread so the plan is to do a lumpectomy and then radiation treatment. No Chemo!!! Yay for that! They may consider hormone therapy as well since the type of cancer I have feeds on the hormones. The down side to that is the menopausal symptoms that go with it. Okay, now to Hunter. The biopsy results [from a rash on his back] show that there are cells associated with some cancers. So, the focus has turned and we are now working with the hematology/oncology group. They have scheduled a PET/CT scan for tomorrow at 3 pm. They have also ordered a bone marrow biopsy that will be done at 11 am. So hopefully by the end of the week, we will know what we are dealing with. This is a very unusual case and it is almost unheard of to be here a week with no answers. Please pray that the people over his care will be able to find the cause and know how to treat it. We love you all SO much and we feel the love and support and prayers you all are sending our way. Love to all!"
• Wednesday, October 1st - " Crazy Day! Hunter did well with his tests! He was in very good spirits tonight even though he is sore. We are hopeful for a good nights sleep! We should have results tomorrow. We feel very blessed to have so much love and support! We love you!"
• "When the night is dark and the clouds are thick, we have an opportunity to put our hand in the Lord's hand and  rely on Him to help us through." We will be holding on tight!"
• Thursday, October 2nd - "We just talked to the Dr. and the bone marrow came back looking okay so they feel confident that they can take leukemia off the list. However, in closer examination of the PET scan, there are some irregularities. The colon wall looks thicker than it should. There is a rare form of Lymphoma that is in the lymph nodes in the gut. His symptoms are consistent with this type of cancer. They are bringing in the gastro team to see if they want to do a colonoscopy or surgical biopsy. Pour on the prayers! We need a miracle!"
• Friday, October 3rd - " Today's update.... I don't really know what to say. The roller coaster is so extreme! Basically, the Dr., and the surgeon don't agree so the colonoscopy and surgery are off for now. I'm speechless about that and have no idea what to think. The cancer on/cancer off bit is killing me, and I'm sorry to have dragged you all there with me! So... back to the drawing board with more tests for shot in the dark possibilities. In other news, I had my meeting with the Surgeon today. She wants me to have an MRI on Thursday of next week. They want to take a closer look at things before continuing with treatment. If everything checks out, then we will proceed as mentioned before. Surgery and then 3 to 6 weeks of radiation followed by hormone therapy. If we don't get some answers soon on Hunter, I may need helpers for a couple of hours in the afternoon to play with Hunter so I can get some rest. Having one on one time helps him stay distracted. We are so grateful for all your love and prayers! We feel it! Love you all."
• Sunday, October 5th - "Hello family. Not much to report. Drs. are mostly doing research to decide what to do next. They want to do another biopsy of the rash and then possibly an MRA. It's like an MRI but focuses on the arteries. They are looking to see if he has a condition that enlarges the arteries and causes fevers. The fevers persist. He spikes at least one every day. Our stake presidency and bishop came this morning and Hunter, Mark, and I all got blessings. It was comforting. We had a miracle happen that let me know that the Lord is mindful of us. I happened to share a little more about our family than usual with the nurse and mentioned I had a son on a mission. She asked me where he was and when I told her, she got this big smile and she told me that her father-in-law was Nick's mission president. Of all the nurses in this hospital and all the missions in Brazil, what are the chances! Anyway, she called her in-laws and gave them the heads up and they told her to give us their personal phone number. She was our nurse again today and she gave us the number and we talked to his mission president this afternoon. He was very compassionate and said we could call Nick if we wanted to. We have decided to wait until we have more answers before that happens. Tender mercies! Gotta love 'em!"
• Monday, October 6th - "I'ts a new week and we have been passed to a new group of doctors. Everything is starting fresh. I'm praying that someone in this group will be guided to solve this mystery. He is scheduled for the MRA this afternoon and they are also scheduling a conference with all the specialties that have worked on his case to meet together in person to discuss his case and hopefully come up with a new game plan."
• Tuesday, October 7th - " Hey y'all, the plan seems to keep changing. The MRA was cancelled because radiology felt like they had enough images to determine the condition of his arteries. His arteries look fine. All the doctors met yesterday and discussed his case for about an hour. They were going to do another rash biopsy, but that is on hold for the moment. They also considered the colonoscopy again, but that is still under consideration. They ran more blood labs but nothing has come back positive yet. He didn't have much fever in the night but still had the sweats like he normally does. He spiked a fever about a half an hour ago [12:30 pm] though. He likes to keep us guessing. My MRI got moved up to this morning. Glad that's over. I agree with Hunter.... really loud and not very fun. I kept telling myself, "If Hunter can be brave, so can I!" Should have results tomorrow or Thursday. After results are in, we will schedule surgery. When the Doctors decide what's next, I'll let you know. Love!
• Wednesday, October 8th - 
• 11:16 am - "Here is the latest.... He had several fevers yesterday and a pretty high one last night with vomiting. One of the tests for inflammatory bowel disease came back inconclusive. Not positive or negative. He is having an MRI of the bowel at 1:30 today and then possibly a lower and upper scope plus liver biopsy on Friday. Right now they are leaning towards Crohn's disease. These tests will either verify or eliminate that possibility. The doctors feel like they are close to a diagnosis."
• 1:00 pm - "Good news! My MRI showed nothing additional so we will proceed as planned. Surgery is scheduled for next Wednesday the 15th."

Around 10 pm (Wednesday) I called Mom. Hunter has had a very rough day. He couldn't eat anything, and then he had to drink a whole liter of contrast fluid for his MRI. He's been throwing up a lot since then. Please continue to pray for him. He's one sick little guy, and we could really use some answers soon. 2 weeks in the hospital is a long time. 

A few years ago for a Family Home Evening, my Dad said our family motto was "We Can Do Hard Things". The other day, Zac jokingly said that we can't have that motto because it sends the universe a message. We all kind of laughed about it, and moved on. But you know what? We CAN to hard things. I've turned back to that motto so many times in the past few years, and especially now. "We CAN do hard things. In the strength of the Lord, we can to ALL things." 

And so we will.