The last month has been crazy GOOD! T-man is doing great. His lab markers are looking good and his weight is moving up. We are still giving him daily antibiotics to help him fight bacterial and fungal infections, We will be doing this for the rest of his life or at least until bone marrow transplant. We also are doing the immune boost shots, which we strongly believe are helping him so much! We just had a follow up with ID and our CGD doctor at PCMC, both departments are very impressed with how is his doing. He did develop a rash from all the antibiotics. They called this rash a from of lupus. Because of the strength of the medications and the length of time he had been on them, it makes his skin very sensitive to the sun! We have to be very careful with him from now on in the sun. We have to keep a hat on him as much as possible and sunscreen as well. We have to even watch the sun in our house coming in from the window or even reflecting off of things. We feel like we can handle this although we do live in the heat of heat and a very sunny town.
Through all of this Tanner is still being Tanner and a growing baby. He is officially a MOVING BABY by army crawling all over the place, which is so fun but stressful because before I could keep him contained to an area on the floor that I knew was clean but now I cant. It will be fine, I will just be cleaning a lot more!
We also MOVED into our new house. We are in love with it and are loving the space! Although it is a lot more for me to clean but it is worth it.
THANKS FOR ALL THE THOUGHTS AND PRAYERS! LOVE YA ALL
Thursday, August 4, 2016
Thursday, June 9, 2016
Life at Home.
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| May 30, 2016 - Jeff sent this picture saying- Well looks like we're going home! T's inflammation markers are all down in normal range. (0.9 compared to 11.3 a few days ago) So the doctor feel good about letting us head back to St. G. Hopefully we can keep it down this time! |
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| Love waking to this happy bright blue eyed baby! T-man is doing great and was able to come home from PCMC yesterday. They are still not 100% sure what was going on in the lungs but they did a slight adjustment on one of his antibiotics and all the many prayers in T's behalf did wonders. His inflammation maker went from 11.1 (normal is <.8 ) last Tuesday to .9 yesterday. He is still a little low on RBC but we are giving him an iron supplement to hopefully help with that. For now the plan is to keep him healthy and continue to push forward with the BMT (bone marrow transplant) #prayers #blessings #Tmantough #toughliketanner #jolleyfamily2016 |
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Another blessing is being approved for immune boost shots. (These shots are similar to insulin shots) this medication is extremely expensive but thanks to a number of things, our insurance has approved the shots. Jeff and I are the lucky loving parents who give him these shots 3x a week. He does not like it one bit but who would. Because of drug and the company who makes it, we had a nurse come to teach us how to give the shots along with teach us more about CGD. She help us relax a tad and gave us hope for this medication for T. She said that she has had many patients who have CGD and have done the 3 preventive medications (the shot and 2 antibiotics) and are living life fairly normal and doing well. This gave us hope for T man. We are still planning on BMT tho.
Our baby boy has turned 6 months old. Where has the time gone. Its crazy how much our lives have change in such a short amount of time. Tanner is still tanner. He is rolling all over the place, loves to laugh,and can get in moods where he is very talkative. He enjoys watching his sister play around him and sometimes with him. In a general he is developing well.... although he has not gained any weight in the last two months. He still weights right around 15 pounds. This has Dr. M and or team Doctors at PCMC concerned. So they have giving us the OK to start solid foods. They hope with solids, breastfeeding and supplementing with formula that we can get him to gain weight.
Saturday, May 28, 2016
Back to PCMC
Tuesday
5.24.2016
Jeff
and T drove back to SLC to PCMC. They were admitted and things started slow. The
only thing done was a blood draw and the team of doctors looking at him.
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| 5.24.2016 This sweet boy and his amazing daddy are head back to PCMC. Unfortunately T-Man's numbers where not that great yesterday and he needs to be re-admitted and evaluated for a new infection and to try and find out why his inflammation in going up and why he is still on verge of becoming anemic. I know he doesnt even look sick and thats what i said to the doctors. And they said that whats har...d about his disease and his age. He can't tell me what wrong or hurting, all we had is labs and imaging. I stayed home to work this week and if he is still up there next i will go up then. It was so hard to let them leave, cause i just want T to stay home but I know this is what is best for him. And his daddy is amazing and make sure they do everything right and what he thinks is best for T. #herewegoagain #Tmantough #toughliketanner #jolleyfamily2016 #missthemalready |
Wednesday 5.25.2016
They
just kept evaluating T today along with ordering a CT of his body to see if we
could see anything that could be causing a hidden infection and to check on his
lymph nodes. Unfortunately CT was booked for the day. Because Tanner was an
inpatient and it wasn’t an emergency they did not get it done until 5PM. So we
didn’t get any results until the next day.
Thursday
5.26.2016
T’s
CT showed that is lymph nodes were doing well, but something going on in his
lungs. It could be the reason for his numbers rising and why his blood count
was still low (If you have low blood and get an infection your body has a
really hard time producing new RBC and building them up). The next step was to
find out if the stuff in his lungs is a viral infection or fungal/bacterial. They
did a nose swab to test for viral infection, but the only way to know for sure is
to do a biopsy on the lung. They worked on getting it scheduled for later the
afternoon or Friday sometime. Also with the CT, we wanted to look at his bowels
for inflammation or any other abnormalities. His bowels looked great on the CT
but felt they needed a scope and biopsy to double check things. We were fine with
this because we would love answers and to make sure we can get him healthy so
we can move forward with the transplant.
Friday
5.27.2016
They
were not able to get T into surgery on Thursday so were being squeezed in
today. The bad part of that was T had to be only on clear liquids all day and
nothing for like 3 hours before his surgery. It was a rough day and he did end
up getting into surgery around 3:30. I felt so bad for him because I am sure he
was starving. The last time he had food was at like midnight. He did have some
clear liquids but he did not care for those very much. I am sure glad Jeff was
there and not me because I would have given in and fed him.
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5.27.2016 this handsome babe has some procedures/surgery today. When they got to PCMC they did a CT of his body and found some yucky stuff in his lungs. They are calling it a hidden form of pneumonia. Although they don't know if its a fungal or viral infection. So today they are going to do a biospy on the lung to get cells and send them to pathology to get testing for which infection this maybe ...is and so they can know the course of action to take to get him better. With this surgery they will have to leave a drain tube in him for 48 hours to allow all the fluid to drain from his lung.
Also T-Man has had problems with blood in his stool since he was born. Most common cause is do to a milk/egg allergy in the breast milk. Long story but blood in stool is also a sign of #CGD. CGD can cause inflammation in his bowels which can cause blood in the stool. So today they are also going to a scope of his intestines and stomach and get a biopsy as well to see what's going on there as well. Be brave and strong my son. Mommy loves you and I can't wait to be with you tomorrow for the day. I am sorry i am not there and i hope you will forgive me for it. But i am extremely grateful for your amazing Dad who has been with you this week and is there today. I know you don't understand what's going on but its all because we love you and its part of the great big plan. #surgery #Tmantough #toughliketanner #PCMC #jolleyfamily2016 |
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| And He is off! |
The
surgery and scope went great. It took about 2 hours to do both. The scope
doctors were very happy with what they saw. Although they did see some granulomas,
they were very small and not too concerning to them right now. The surgeon that
did the lung biopsy was very pleased with the surgery and felt that they gave
pathology some really good samples. Tanner did awesome. He had a hard time
coming out of his anesthesia but managed to hold up fairly well. He had a tube
left in his side to drain the excess fluid in his lung. It could be in anywhere
from 24 to 48 hours.
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| Post Surgery - He is So HANDSOME! |
Saturday
5.28.2016
Reunited
with my little man and it feels so good.
One of the many blessings of Jeff’s work. I was able to fly up for the day and be with my baby. I just wanted to hold him the whole time. He is doing really well with everything. He is still sleepy and in pain but doing a lot better than expected. Not a lot of fluid has drained from the lung so they think maybe they could take that tube out TODAY. After doing a chest Xray this afternoon, we were able to take the chest tube out. He did so good during the process, and I hope it allows him to feel a lot better. It has been great being here with T and Jeff. Even if it is just a short time.
One of the many blessings of Jeff’s work. I was able to fly up for the day and be with my baby. I just wanted to hold him the whole time. He is doing really well with everything. He is still sleepy and in pain but doing a lot better than expected. Not a lot of fluid has drained from the lung so they think maybe they could take that tube out TODAY. After doing a chest Xray this afternoon, we were able to take the chest tube out. He did so good during the process, and I hope it allows him to feel a lot better. It has been great being here with T and Jeff. Even if it is just a short time.
Home
The
next two weeks consisted of us getting in our new routine as a family. We were
able to play with friends, and go outside as long as it wasn’t windy. We were
enjoying life and looking forward to moving into our new house in a little over
a month. We had a follow up with Dr. Marsden one week after we got home. He
just talked to us for like 30 minutes about how we are all going to be working
together and learning together. Tanner had a blood draw the first Monday home. This
is when his numbers (inflammation and WBC) started to rise and his anemic was
still low (after T’s surgery he was really low on blood. We don’t want to give
him a transfusion or iron because we’re on the path to do a bone marrow
transplant and also because of his disease. If we were to give him iron or a
transfusion while he had an infection, it’s possible that the infection will
feed off the new health stuff and grow and not get better). Because his numbers
where the way they were, Dr. Chen and infectious disease wanted us to see Dr. Marsden
on the following day. Dr. Marsden was great to get us in, even on his lunch. He
looked over T and called the other doctors to inform them on how he looked and
acted. They decided that we could just keep him home and keep a close eye on
him. The next week his numbers went up again and his blood count dropped. Dr. Marsden
and Dr. Chen talked and felt it was best for T to go back to PCMC and be
evaluated again.
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| Sister loves to watch Shows with you. |
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| Happy Sunday with out Daddy |
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5.22.2016 Just an update on this Sweet Boy! He is doing great at home. And we are loving being home although We are busy with him and all his medications and trying to keep everything clean and spending time with C and one another. Before we left the hospital, the wonderful team of Doctors sat with us and gave us guidance on how to help our sweet little man and keep him healthy. One thing they di...d say and they had to keep reminding us is that he CAN FIGHT off viral infections, just not bacterial and fungal stuff. He is on daily antibiotics to help him fight infections. One thing they did say is don't live in a bubble but also take more precautions then normal. There is no black and white but a lot of grey guidance and how we feel as parents about what we do or don't do. We have been approved for immune boost shots and our transplant. So now we just need to get training on how to give him shots and the meds, along with finding a donor. Transplant is still probably over a year away. Just cause we want him to be a little old and healthy as possible. We have a couple doctors appointments this week and then our follow up with our Primary Children's team to make sure everything is going good next Tuesday. #Home #Tmantough #toughliketanner #jolleyfamily2016
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Coming Home
Tuesday
May 10th
Was
an early morning day. I had to get up and get ready to leave for home. I also
had to get Caroline’s and my stuff ready. I could tell that she was so ready to
be home. Jeff ran us to the airport and then came back to the hospital. After
only waiting a little while, the team of doctors were happy with how well Tanner
was doing and how his labs were looking. They said they needed to see if home
health was arranged and if it was T could go home THAT DAY. We needed home
health because T has a PICC line in his arm for his medications, and so that
blood draws could be done weekly. It was a very happy moment when home health
was all arranged and we got the YES to go home. They had to plan things just
right because T needed meds every eight hours through his PICC line. Jeff had until
four to get things ready to leave so he had to run down to the McDonald house
and do everything there. He then came back to the hospital to gather everything
up and do all of the discharge stuff. He is one amazing daddy to do all of this
by himself. Our family in ST.G was also awesome. I wanted my house very clean
before T came home to make sure no bacteria or fungal stuff was lingering in my
house. Our family came and helped us clean our house really well and wipe
everything down so it was ready for T. While I was at work I was able to help
arrange things with home health and get T’s meds and everything he would need
at home. It was kind of a crazy process but we made it work. Jeff and T left
PCMC about 5:30 pm and made it home around 11ish. They we had to wait up for
home health to come at midnight and help us give Tanner his meds. They didn’t
have to come every time we administered his meds, just the first time to make
sure we knew how to do everything and we knew what everything was.
Monday May 9th
Monday
May 9th
We
were able to arrange a time for us to meet Dr. Chen today. I was happy about
this because there was talk that she wasn’t going to be able to meet us until
Tuesday and I was leaving early Tuesday morning to go back to St. G and work.
We met with Dr. Chen and our bone marrow transplant doctor. We talk for about
an hour and got all of our questions answered on both ends. Dr. Chen gave us a
lot of hope in how our new lives were going to be along with really pushing for
a bone marrow transplant. She wasn’t pushing in the sense of we had to it, but
more in that for him to have mostly normal way of life and to live long and
happy. Jeff was able to come back up Monday night after his shift.
The Weekend / Mothers Day
Friday
and Saturday
Two
great days of recovery for sure. We all just sat around and enjoyed the time we
had together. Jeff was leaving to head back to work for the weekend on Friday
afternoon, so we got his things together and took him out to the airport. Friday
and Saturday consisted of lots of visitors for our T-man. He did really well after
everything he had been through.
Sunday
mother's day
Mother’s
day at PCMC; It wasn't anything big and spectacular but it was one I will
remember. T was doing amazing. He was responding to meds wonderfully and started
to get a little personality again. Smiling and talking up a storm. The best
however was his laugh and I was able to catch it on video which was even
better. I felt comfortable to leave for a few hours and go have dinner at my
sisters. It was great to get out of the hospital and have a home cooked meal. I
love my family and the support they showed for us. We still were not sure when
T would be coming home but we made arrangements for the next week, hoping we
wouldn’t have to use them. We knew that we needed to see and meet Dr. Chen who
would be our doctor for life with Tanner. When we were first diagnosed, we met
another doctor who works alongside Dr. Chen. I did not like him at all. He did
not have very good bedside manners and everything was black and white for him
with no grey. This made some of his comments very contradicting. After talking
with him, I was ready to meet Dr. Chen and get my many questions answered by
someone who works with a large number of CGD patients and who had better bed
side manners.
Friday, May 27, 2016
Surgery Day!
Thursday May 5, 2016
Today was a good day. T did as well as he could without eating. I was able to feed him till 6am then I had to stop. His surgery was at noon, so we had some time for C to come in and see him for a bit. We gave him a good bath with the special cleaning soap. We got him ready in nice clean clothes. After this was all done, we had about 30 minutes before surgery or so we thought. They actually got ahead of schedule and called for us early. So Jeff and I walked him down and spoke with the anesthesiologist and they explained a little more about the surgery then said give your kisses and hugs. We did just that and then handed him over. They said we will see you in about 3 hours. It was so hard seeing him go but I knew it was best for him. He is such a brave strong boy. As we had some time to kill, we went back to the house and cleaned a bit and did some much needed laundry and let C play with the toys and outside. After that she needed a nap. We laid her down and my mom stayed with her and we went back to the hospital so we could be there when Tanner got back. It was a good thing we did because he actually got done about 30 minutes early. The doctors felt really good about how everything went. They got nice clean margins on the liver and got a good chunk of samples from the lymph nodes. They also put in a PICC line after surgery before waking him up. This PICC line is coming home with us and is how they will continue to give his meds and draw blood. So no more pokes for a bit! T was so sleepy for the rest of the day, which was fine as long as he kept eating somewhat. He would eat for only a bit so they had to give some fluids to keep him hydrated. We just did a lot more hanging out and staying closer to Tanner. He had a hard time coming out of it and did not like the way it made him feel. I felt so bad for him. I just wanted to take all the pain from him and help him. I held him for like 3 hours and just let him sleep and he loved every minute of it. He did well throughout the night. He still didn't eat great but they said they wanted to give it until morning.
Today was a good day. T did as well as he could without eating. I was able to feed him till 6am then I had to stop. His surgery was at noon, so we had some time for C to come in and see him for a bit. We gave him a good bath with the special cleaning soap. We got him ready in nice clean clothes. After this was all done, we had about 30 minutes before surgery or so we thought. They actually got ahead of schedule and called for us early. So Jeff and I walked him down and spoke with the anesthesiologist and they explained a little more about the surgery then said give your kisses and hugs. We did just that and then handed him over. They said we will see you in about 3 hours. It was so hard seeing him go but I knew it was best for him. He is such a brave strong boy. As we had some time to kill, we went back to the house and cleaned a bit and did some much needed laundry and let C play with the toys and outside. After that she needed a nap. We laid her down and my mom stayed with her and we went back to the hospital so we could be there when Tanner got back. It was a good thing we did because he actually got done about 30 minutes early. The doctors felt really good about how everything went. They got nice clean margins on the liver and got a good chunk of samples from the lymph nodes. They also put in a PICC line after surgery before waking him up. This PICC line is coming home with us and is how they will continue to give his meds and draw blood. So no more pokes for a bit! T was so sleepy for the rest of the day, which was fine as long as he kept eating somewhat. He would eat for only a bit so they had to give some fluids to keep him hydrated. We just did a lot more hanging out and staying closer to Tanner. He had a hard time coming out of it and did not like the way it made him feel. I felt so bad for him. I just wanted to take all the pain from him and help him. I held him for like 3 hours and just let him sleep and he loved every minute of it. He did well throughout the night. He still didn't eat great but they said they wanted to give it until morning.
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| This little happy, finger sucking, toe grabbing, IV pulling tough guy has surgery today! 5.5.2016 They will being going in and removing a lymph node for better testing and hopefully understand what infection made him so sick. Also with all the testing and scans that T has had they have found a spot on his liver that is concerning to all of us so they will also be removing that spot on his liver and sending it for tests. Be strong and tough T. Our Heavenly Father loves you and will be with you the entire time. Dad, Mom, and C will be praying for you and the surgeons and anxiously waiting for you to come back to your room. WE LOVE YOU! #Tmantough#toughliketanner #PCMC #jolleyfamily2016 |
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| Our T-Man before surgery and after! He was a CHAMP! The Doctors said he did great and feel great on how everything went! I am confident the lord was with him the entire time and guiding the surgeon. They sent everything to lab and pathology, its going to take a couple of days to get the results back. The top right corner picture is chunk of his liver with the mass inside (the white circular area). T is doing as well possible. BIG THANKS FOR ALL THE THOUGHTS AND PRAYERS TODAY. They are truly felt. #Tmantough#toughliketanner #PCMC #jolleyfamily2016 |
Zoo Day
Wednesday May 4, 2016
Because today was a low day and not a lot going on, we decided to talk C to the Zoo! She loved it. We also did get somewhat of results back on Tanners Lymph Biopsy, they were pretty sure it was not cancer. So they called the ENT to schedule a lymph removal at the same time of his liver surgery. Unfortunately the ENT Drs schedule was packed so he talked with the Surgeon doing the liver and decided that he could do both and save Tanner from having to have another surgery on a different day and a chance to get results to find out what infection started this mess.
Because today was a low day and not a lot going on, we decided to talk C to the Zoo! She loved it. We also did get somewhat of results back on Tanners Lymph Biopsy, they were pretty sure it was not cancer. So they called the ENT to schedule a lymph removal at the same time of his liver surgery. Unfortunately the ENT Drs schedule was packed so he talked with the Surgeon doing the liver and decided that he could do both and save Tanner from having to have another surgery on a different day and a chance to get results to find out what infection started this mess.
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5.4.2016 What do you do when you have been in the hospital far to long and have some time to get away. Go to the Zoo of course! Miss C was in Heaven! She ran to every animal. It a great way to get away from everything and give a chance to focus on our Sweet Caroline before Tman's surgery! She is a very patient little girl and has been great with everything and everywhere we have had to send her. Although she is still two and we have our moments, but they are few and far between. #hoglezoo #MissC#Tmantough #toughliketanner #PCMC#jolleyfamily2016 |
The Diagnosis
Tuesday May 3
As we waited for the MRI – We tried to help T not think about how hungry he was. We let him sleep as much as he wanted and let him play with Caroline. When it was time for him to go down to the MRI, Caroline and Jeff went down and played at the Ronald House. I took him down to the MRI and got him to sleep, and then I was sent back upstairs. I tried to take a nap, and did catch a small one. Then C and Jeff came back right around the same time T came back. It took him some time to come out of the sedation. He just wanted to stay asleep, which was a good thing because this is when the team of doctors, both medical and infectious disease, came into talk to us because they had some results that came back that held answers
for us. I was so nervous before they told us what it was because I was nervous it was lymphoma cancer.
5.3.2016 Today our Tanner boy has been diagnosed with an immune deficiency called Chronic Granulomatous Disease. In a nut shell, his white blood cells are not working well. They can find the bacteria making him sick but can't kill it. He is going to be very susceptible to a lot and we are going to have a change in lifestyle. But we are going to try our hardest to give him the best life possible. He will be on daily antibiotics to help his immune system but it will never go away unless we take the chance of a bone marrow transplant. So we hope and pray that we can get him better so we can go home and we hope we can keep him healthy. This is going to be a fight but we love our Tman and want the best for him. #Tmantough #toughliketanner #PCMC #jolleyfamily2016
Even though we had an answer for a lot of our questions. The Mass in the liver was still a rare finding and they wanted a closer look at it, and by closer I mean under a microscope. The surgeon was called to come and evaluate Tanner. He did and scheduled a surgery for Thursday. They were already booked for Wednesday.
As we waited for the MRI – We tried to help T not think about how hungry he was. We let him sleep as much as he wanted and let him play with Caroline. When it was time for him to go down to the MRI, Caroline and Jeff went down and played at the Ronald House. I took him down to the MRI and got him to sleep, and then I was sent back upstairs. I tried to take a nap, and did catch a small one. Then C and Jeff came back right around the same time T came back. It took him some time to come out of the sedation. He just wanted to stay asleep, which was a good thing because this is when the team of doctors, both medical and infectious disease, came into talk to us because they had some results that came back that held answers
for us. I was so nervous before they told us what it was because I was nervous it was lymphoma cancer.
5.3.2016 Today our Tanner boy has been diagnosed with an immune deficiency called Chronic Granulomatous Disease. In a nut shell, his white blood cells are not working well. They can find the bacteria making him sick but can't kill it. He is going to be very susceptible to a lot and we are going to have a change in lifestyle. But we are going to try our hardest to give him the best life possible. He will be on daily antibiotics to help his immune system but it will never go away unless we take the chance of a bone marrow transplant. So we hope and pray that we can get him better so we can go home and we hope we can keep him healthy. This is going to be a fight but we love our Tman and want the best for him. #Tmantough #toughliketanner #PCMC #jolleyfamily2016
Even though we had an answer for a lot of our questions. The Mass in the liver was still a rare finding and they wanted a closer look at it, and by closer I mean under a microscope. The surgeon was called to come and evaluate Tanner. He did and scheduled a surgery for Thursday. They were already booked for Wednesday.
The Beginning
April 2016
The month of April started out so calm and peaceful. Our new house got started being built, I just received a new job – part-time status instead of PRN. Jeffs work was going good and Caroline and Tanner where healthy little people. Then we all got allergies/cold because the cotton trees and the wind started to blow like crazy. Tanner seemed to get the worse of it all. He received his 4 month old shots and then a week later was in the doctor’s office again for what we thought was a simple ear infection. That was not the case. About 5 days later tanner started spiking fevers of 104 about every morning and night. This was a constant thing. We took him to the doctor and we ran what then felt like a million tests in one day. From all of these tests we found out that he had what was called Parainfluenza 3B (very similar to a really bad cold) Our Dr. was happy about the result until the fevers still did not stop. With a couple of his fevers he got a rash, heat rash like. So we took him back in. He ran a ton more labs trying to find something. He called us multiple times and had other colleagues look at him. He called a couple other doctors that work for PCMC, and they gave us a couple of suggestions of other tests to run. When tests still came back either negative or didn’t give us a reason for his fever, we got the call we didn’t want, telling us to head to PCMC and be admitted for further evaluation. At this point it had been about 10 days of fevers at 104, at least 2X a day. So Sunday April 24th we drove to SLC to go to their ER and be admitted for further evaluation. When we got to the ER we did a lot of waiting around at first, and lot of explaining what was going on trying to hopefully find an answer. We did another lab draw, noise swab, urine sample, chest x-ray, and put in IV. At this point it had been a long day of driving, worrying, and making our little T-Man crying and it was far from over. One of the main concerns that mainly sent us to PCMC was the risk of Atypical Kawasaki disease (condition that causes inflammation in the walls of medium-sized arteries throughout the body, including the coronary arteries, which supply blood to the heart muscle.) The time frame for this disease is about 10 days of fever and then by this point, if you have the disease then you need a really strong antibodies to help your body get rid of it and to help it heal and have you return to normal. Well that was the first disease they wanted to rule out so we had an echo as soon as we got to our room and then we waited. We met with a couple of our team of doctors, explained things again and answered a million questions. At this point some test did come back that he did test positive again for the parainfluenza. With the echo and lab report back, the cardiologist came in to talk to us, at this point he was pretty confident that the fever was coming from the parainfluenza and the echo looked great! He didn’t think he had Kawasaki disease. The other doctors agreed with this and said they thought it was just the parainfluenza and that we would probably go home the next day. We were not comfortable with this answer, and neither was our Dr. in St. George. As we went to bed and said our prayers we prayed that our Team of Doctors would take a closer look at things and maybe find another reason for his fever rather than just the parainfluenza.
4.25.2016
As we sat and waited for our team of Doctors to come in, I was just sick and nervous that they were just going to send us home with no new answers than the answers we already had. We felt the parainfluenza was not the only reason for his fever. Our Team came in and introduced themselves and from the get go I could tell I was going to like the lead Doctor, Dr. Bernhardt Fassl, for a number of reasons. The first being that he did not agree or think that his fever for this long, and abnormal labs were caused by just the parainfluenza. Also, he had a really cool
accent and knew how to make this mom feel comfortable. With him not agreeing with parainfluenza we had to start with a whole set of things. First came the history all over again. Next came information where we lived and lifestyle he has had up to his point in his life, more labs and finally came the time for poking around and seeing if everything looked normal on him. They did find something abnormal. His lymph nodes in his neck were abnormally large and felt infected. We started the antibiotic that should have helped any infection in his neck area to go away.
Tuesday 4.26.2016
24 hours after you start an antibiotic you should usually see some improvement. Mr. T did not have any improvement. We did a CT to double check for any masses or abnormality. The good news was there was not prominent abnormality like a mass or lesions on his lymph nodes. We were happy with this because the way it seemed at the time was that it was an infection that just needed a stronger antibiotic to help it get out of the body. “Sweet!” we all thought! An antibiotic and some labs to see what infection for the next 24 hours and then we would be out of here.
Wednesday 4.27.2016
Well Folks T-Man had a different plan. He did not respond to the antibiotics. He kept having fevers like clockwork (every 11 to 12 hours) we would give him Tylenol and the fever would break and we would be good. Also his lymph nodes were still very swollen and hard. Well because of the no response after the first 48 hours on the antibiotic the doctors knew that they needed a closer look at his lymph nodes to make sure they did not create any pockets of fluid called abscesses that were keeping the bacteria in them. So we went for an ultrasound of the neck. It showed just the same as the CT, just large lymph nodes and no abscesses. So now we are back to square one… what’s causing the infections to not be touched by the antibiotic? Unfortunately, because the ultrasound did not show anything, and the report came back, Dr. Fassl was thinking that he did the Ultrasound too early for any pockets to be collected. But then again his labs were still not looking good from the antibiotics either, and they wanted to get a consultation from infectious disease. We decided that because it seemed like it was going to just be a couple more exams and testing to tell what is wrong with Tanner that Jeff could go home and work.
Thursday 4.28.216
Started out as a very frustrating day! We did absolutely NOTHING all morning! I started to get really upset because I was ready to be home. If they were just not going to do any tests then why did we need to be here? I finally expressed my concerns and WOW! The ball got moving very fast. Infectious Disease specialist came in to evaluate him and decided that they thought we needed some imaging of the abdomen to make sure there was no hidden reason for the infection to still be going on. Ultrasound had an opening and down we went. In the exam, I was watching everything like a hawk…. Then I saw it. A MASS! In the liver! I started shaking and knew I should not be watch anymore but I couldn’t help it. As the Technologist scanned the area, my mind was going through every mass that I had seen and learned about in the liver and it looked like 3 things in one… It had Calcifications, it had blood flow, and it was abnormal in texture from the surrounding liver. As I kept looking at it, I just had to tell myself to wait for the report from the Radiologist. As I waited I got more and more nervous… I kept thinking my baby is more than sick… HE HAS CANCER! Because I have access to my kids’ records through my health portal I was able to read the entire report. My thoughts came true as the report had the
wording HEPATOBLASTOMA. My heart sank… then I said wait for the doctor… but I couldn’t I needed to ask him a million questions and what we could do to be sure this was or was not cancer without a biopsy. So I had the nurse call the physician. They were very concerned by this, and came and talked to me very quickly. They said as of right now this is all they had to go off of. They needed more labs to confirm the imaging and that those labs would be drawn but would take a couple of hours…and they were not even going to draw lab till the morning! But to keep it in mind because the radiologist and team of doctors thought it was a very high chance of cancer. After they left I immediately called Jeff. He didn’t answer, I called again and once again no answer. I was going to lose it because I needed him so bad and he was all the way in St. G! Thank goodness my mom was there with me but still I needed my husband and then it hit me… I also needed our loving Savior more! I immediately went to him in prayer! I pleaded to help me and help Tanner and help me explain it all to Jeff. I called Jeff again and he finally answered and all I said was you need to get back up here, they think the mass in the liver is Cancer. The phone went completely silent. I knew exactly what my husband was feeling and that he was scared to death, as was I. We finally got everything talked out and things arranged for him and C to come up the next day! (Actually originally he was going to drive but the weather was bad and by the time he got on the road and that he realized it was probably not the best idea. It would be only 3 hours earlier of him being there and that there was nothing that was going to happen in those 3 hours.) After that came the long process of me calling my dad and all of the siblings. (Jeff called his) It was a horrible thing to have to retell over and over. As I told them I felt their hearts break and I hear the fear and concern for us in their voices. With their love for us and help I knew that our family could handle this… BUT ONLY IF WE DID IT TOGETHER. That night I knew I needed to get some sleep but I knew it would be hard. Because of the testing that needed to be done on Tanner, he was unable to eat after like 3 in the morning. So instead of me staying at the hospital with Tanner, I knew it would probably be easier for both of us if I went and stayed at the Ronald McDonald house. (We were able to get a room there after we were in the hospital for 2+ nights) I had a hard time falling asleep but I knew I needed to try so I could have the strength to help Tanner. I prayed to my heavenly father to be with me, Jeff and Tanner and to pray that we could handle whatever was about to come our way.
Friday 4.29.2016
Everything started early with labs drawn and sent for testing. Then the schedule changed for the day. We were trying to get all the testing done in the morning but we could only put him under sedation 1 time in a 24 hour period so we had to change some things. I was able to feed him in the morning and then keep him NPO (no oral food) for the next 5+ hours. Then running and getting Jeff and C from the airport. Oh, how I missed that little girl and she was just what I needed during this time. Our amazing Dr. Fassl came in early to talk with us… He actually didn’t do a lot of talking more than just giving me a Hug and letting me cry it out. He gave amazing advice and said that he had faith that he knew we could handle this. Unfortunately he was leaving for the weekend and would not be back on our services but wanted to keep in touch. He got our cell numbers and said he would call or text us for updates. Around noon Tanner needed to drink some contrast. Due to Tanner’s stubbornness, that didn’t happen. We had to put in a G-Tube to give him the contrast. Then about an hour later it was time to go get a CT of his body from his head to his pelvis, then right into a biopsy of a lymph node. During the biopsy we returned to ours/Tanner’s room to have some time together, just the two of us, (C was with grandma at the house) since this whole thing started. We cried, talked and tried to take a little nap. About an hour later the nurse came and got to us to go get Tanner. The biopsy went
well and they were about to get some good samples to be sent for testing for both infection and cancer. Shortly after we got back to our room the Dr.s came in to let us know the results of the CT and Lab work. The lab work was the big one to determine if T had liver cancer. The AFP came back normal and the CT said unless it was clinically indicated (meaning labs showed something in the cancer realm of things) it was probably just a hemangioma. So the Dr.s were pretty sure that it was not cancer but just to be sure they wanted to wait till more labs and testing came back and also call in the GI specialists and oncology teams to take a look. At this point it was already Friday evening and we all know what happens on the weekend at the hospital. It kind of shuts down to a point. So we would most likely not get any results or more information until Monday.
At this point – Tanners fevers were starting to become less frequent. I think we made it like 18 hours in-between fevers.
The Weekend brought a whole new pace at the hospital and gave us more time to spend together in a little room, hoping and praying that our little boy did not have cancer and just had a really bad infection that was going to take the strong meds and a little longer to heal. We did laundry had lots of visitors and family come up and see us. Along with lots of tears and support given to our little family.
Sunday was a day that was needed. At primary’s they have their own little branch that meets each Sunday for about 30 minutes to take the sacrament and have a speaker. This Sunday was fast Sunday. Jeff and I both needed this deeply and man what a difference I personally felt after having a day of peace and rest and time to focus on HIM, Our Loving Savior, instead of the worldly problems. It was nice to just spend time with our whole family with minimal interruptions.
Monday May 2 - Was still just a lot of waiting for labs and just making sure everything was going well. As we were waiting for lab, infectious disease decided that maybe they would check and make sure Tanner’s immune system was functioning properly. Although this test took a couple of days to come back, they still wanted it tested. As we were waiting for the Biopsy of the lymph node to come back the ENT Dr.s did not want to do anything until they had a report to make sure that Tanner did not have Lymphoma because you don’t want to cut into a possible chance for cancer unless you know what’s going on. We also saw the GI Doctors who spoke with the radiologists and looked at Tanners history and decided it would be best to get an MRI on his belly to better look at that mass – along with checking his whole belly for anything else. The MRI was scheduled for the next day – and because he needed to be sedated again that meant NPO after 6 AM for our T- Man.
The month of April started out so calm and peaceful. Our new house got started being built, I just received a new job – part-time status instead of PRN. Jeffs work was going good and Caroline and Tanner where healthy little people. Then we all got allergies/cold because the cotton trees and the wind started to blow like crazy. Tanner seemed to get the worse of it all. He received his 4 month old shots and then a week later was in the doctor’s office again for what we thought was a simple ear infection. That was not the case. About 5 days later tanner started spiking fevers of 104 about every morning and night. This was a constant thing. We took him to the doctor and we ran what then felt like a million tests in one day. From all of these tests we found out that he had what was called Parainfluenza 3B (very similar to a really bad cold) Our Dr. was happy about the result until the fevers still did not stop. With a couple of his fevers he got a rash, heat rash like. So we took him back in. He ran a ton more labs trying to find something. He called us multiple times and had other colleagues look at him. He called a couple other doctors that work for PCMC, and they gave us a couple of suggestions of other tests to run. When tests still came back either negative or didn’t give us a reason for his fever, we got the call we didn’t want, telling us to head to PCMC and be admitted for further evaluation. At this point it had been about 10 days of fevers at 104, at least 2X a day. So Sunday April 24th we drove to SLC to go to their ER and be admitted for further evaluation. When we got to the ER we did a lot of waiting around at first, and lot of explaining what was going on trying to hopefully find an answer. We did another lab draw, noise swab, urine sample, chest x-ray, and put in IV. At this point it had been a long day of driving, worrying, and making our little T-Man crying and it was far from over. One of the main concerns that mainly sent us to PCMC was the risk of Atypical Kawasaki disease (condition that causes inflammation in the walls of medium-sized arteries throughout the body, including the coronary arteries, which supply blood to the heart muscle.) The time frame for this disease is about 10 days of fever and then by this point, if you have the disease then you need a really strong antibodies to help your body get rid of it and to help it heal and have you return to normal. Well that was the first disease they wanted to rule out so we had an echo as soon as we got to our room and then we waited. We met with a couple of our team of doctors, explained things again and answered a million questions. At this point some test did come back that he did test positive again for the parainfluenza. With the echo and lab report back, the cardiologist came in to talk to us, at this point he was pretty confident that the fever was coming from the parainfluenza and the echo looked great! He didn’t think he had Kawasaki disease. The other doctors agreed with this and said they thought it was just the parainfluenza and that we would probably go home the next day. We were not comfortable with this answer, and neither was our Dr. in St. George. As we went to bed and said our prayers we prayed that our Team of Doctors would take a closer look at things and maybe find another reason for his fever rather than just the parainfluenza.
4.25.2016
As we sat and waited for our team of Doctors to come in, I was just sick and nervous that they were just going to send us home with no new answers than the answers we already had. We felt the parainfluenza was not the only reason for his fever. Our Team came in and introduced themselves and from the get go I could tell I was going to like the lead Doctor, Dr. Bernhardt Fassl, for a number of reasons. The first being that he did not agree or think that his fever for this long, and abnormal labs were caused by just the parainfluenza. Also, he had a really cool
accent and knew how to make this mom feel comfortable. With him not agreeing with parainfluenza we had to start with a whole set of things. First came the history all over again. Next came information where we lived and lifestyle he has had up to his point in his life, more labs and finally came the time for poking around and seeing if everything looked normal on him. They did find something abnormal. His lymph nodes in his neck were abnormally large and felt infected. We started the antibiotic that should have helped any infection in his neck area to go away.
Tuesday 4.26.2016
24 hours after you start an antibiotic you should usually see some improvement. Mr. T did not have any improvement. We did a CT to double check for any masses or abnormality. The good news was there was not prominent abnormality like a mass or lesions on his lymph nodes. We were happy with this because the way it seemed at the time was that it was an infection that just needed a stronger antibiotic to help it get out of the body. “Sweet!” we all thought! An antibiotic and some labs to see what infection for the next 24 hours and then we would be out of here.
 |
| 4.26.2016 Being sick is NO fun at all. Being sick and not knowing why is even WORSE. Our little T man has been feeling under the weather for some time with really high fevers. It all started with an ear infection that possibly lead to parainfluenza that lead us to still having fevers. Our amazing, caring, loving Dr is St.G ran all the test in the books to try to figure out what was wrong. After all the tests and phone calls our Dr and to other specialist and still no BOLD answers we were sent to the AMAZING PCMC for further evaluation! As we have sat here at PCMC we have felt the love and many prayers that have been said in behalf of our sweet family. We have been here since Sunday and with many more rest ran we are HOPING we have found the answer to the fevers. We love the amazing team of Dr.s we have for our sweet T man here at PCMC and hope to be on our way home soon with a health baby. #BigT #PCMC #happybabyevenwhensick #bigthanks #jolleyfamily2016 |
Well Folks T-Man had a different plan. He did not respond to the antibiotics. He kept having fevers like clockwork (every 11 to 12 hours) we would give him Tylenol and the fever would break and we would be good. Also his lymph nodes were still very swollen and hard. Well because of the no response after the first 48 hours on the antibiotic the doctors knew that they needed a closer look at his lymph nodes to make sure they did not create any pockets of fluid called abscesses that were keeping the bacteria in them. So we went for an ultrasound of the neck. It showed just the same as the CT, just large lymph nodes and no abscesses. So now we are back to square one… what’s causing the infections to not be touched by the antibiotic? Unfortunately, because the ultrasound did not show anything, and the report came back, Dr. Fassl was thinking that he did the Ultrasound too early for any pockets to be collected. But then again his labs were still not looking good from the antibiotics either, and they wanted to get a consultation from infectious disease. We decided that because it seemed like it was going to just be a couple more exams and testing to tell what is wrong with Tanner that Jeff could go home and work.
Thursday 4.28.216
Started out as a very frustrating day! We did absolutely NOTHING all morning! I started to get really upset because I was ready to be home. If they were just not going to do any tests then why did we need to be here? I finally expressed my concerns and WOW! The ball got moving very fast. Infectious Disease specialist came in to evaluate him and decided that they thought we needed some imaging of the abdomen to make sure there was no hidden reason for the infection to still be going on. Ultrasound had an opening and down we went. In the exam, I was watching everything like a hawk…. Then I saw it. A MASS! In the liver! I started shaking and knew I should not be watch anymore but I couldn’t help it. As the Technologist scanned the area, my mind was going through every mass that I had seen and learned about in the liver and it looked like 3 things in one… It had Calcifications, it had blood flow, and it was abnormal in texture from the surrounding liver. As I kept looking at it, I just had to tell myself to wait for the report from the Radiologist. As I waited I got more and more nervous… I kept thinking my baby is more than sick… HE HAS CANCER! Because I have access to my kids’ records through my health portal I was able to read the entire report. My thoughts came true as the report had the
wording HEPATOBLASTOMA. My heart sank… then I said wait for the doctor… but I couldn’t I needed to ask him a million questions and what we could do to be sure this was or was not cancer without a biopsy. So I had the nurse call the physician. They were very concerned by this, and came and talked to me very quickly. They said as of right now this is all they had to go off of. They needed more labs to confirm the imaging and that those labs would be drawn but would take a couple of hours…and they were not even going to draw lab till the morning! But to keep it in mind because the radiologist and team of doctors thought it was a very high chance of cancer. After they left I immediately called Jeff. He didn’t answer, I called again and once again no answer. I was going to lose it because I needed him so bad and he was all the way in St. G! Thank goodness my mom was there with me but still I needed my husband and then it hit me… I also needed our loving Savior more! I immediately went to him in prayer! I pleaded to help me and help Tanner and help me explain it all to Jeff. I called Jeff again and he finally answered and all I said was you need to get back up here, they think the mass in the liver is Cancer. The phone went completely silent. I knew exactly what my husband was feeling and that he was scared to death, as was I. We finally got everything talked out and things arranged for him and C to come up the next day! (Actually originally he was going to drive but the weather was bad and by the time he got on the road and that he realized it was probably not the best idea. It would be only 3 hours earlier of him being there and that there was nothing that was going to happen in those 3 hours.) After that came the long process of me calling my dad and all of the siblings. (Jeff called his) It was a horrible thing to have to retell over and over. As I told them I felt their hearts break and I hear the fear and concern for us in their voices. With their love for us and help I knew that our family could handle this… BUT ONLY IF WE DID IT TOGETHER. That night I knew I needed to get some sleep but I knew it would be hard. Because of the testing that needed to be done on Tanner, he was unable to eat after like 3 in the morning. So instead of me staying at the hospital with Tanner, I knew it would probably be easier for both of us if I went and stayed at the Ronald McDonald house. (We were able to get a room there after we were in the hospital for 2+ nights) I had a hard time falling asleep but I knew I needed to try so I could have the strength to help Tanner. I prayed to my heavenly father to be with me, Jeff and Tanner and to pray that we could handle whatever was about to come our way.
Friday 4.29.2016
Everything started early with labs drawn and sent for testing. Then the schedule changed for the day. We were trying to get all the testing done in the morning but we could only put him under sedation 1 time in a 24 hour period so we had to change some things. I was able to feed him in the morning and then keep him NPO (no oral food) for the next 5+ hours. Then running and getting Jeff and C from the airport. Oh, how I missed that little girl and she was just what I needed during this time. Our amazing Dr. Fassl came in early to talk with us… He actually didn’t do a lot of talking more than just giving me a Hug and letting me cry it out. He gave amazing advice and said that he had faith that he knew we could handle this. Unfortunately he was leaving for the weekend and would not be back on our services but wanted to keep in touch. He got our cell numbers and said he would call or text us for updates. Around noon Tanner needed to drink some contrast. Due to Tanner’s stubbornness, that didn’t happen. We had to put in a G-Tube to give him the contrast. Then about an hour later it was time to go get a CT of his body from his head to his pelvis, then right into a biopsy of a lymph node. During the biopsy we returned to ours/Tanner’s room to have some time together, just the two of us, (C was with grandma at the house) since this whole thing started. We cried, talked and tried to take a little nap. About an hour later the nurse came and got to us to go get Tanner. The biopsy went
well and they were about to get some good samples to be sent for testing for both infection and cancer. Shortly after we got back to our room the Dr.s came in to let us know the results of the CT and Lab work. The lab work was the big one to determine if T had liver cancer. The AFP came back normal and the CT said unless it was clinically indicated (meaning labs showed something in the cancer realm of things) it was probably just a hemangioma. So the Dr.s were pretty sure that it was not cancer but just to be sure they wanted to wait till more labs and testing came back and also call in the GI specialists and oncology teams to take a look. At this point it was already Friday evening and we all know what happens on the weekend at the hospital. It kind of shuts down to a point. So we would most likely not get any results or more information until Monday.
At this point – Tanners fevers were starting to become less frequent. I think we made it like 18 hours in-between fevers.
The Weekend brought a whole new pace at the hospital and gave us more time to spend together in a little room, hoping and praying that our little boy did not have cancer and just had a really bad infection that was going to take the strong meds and a little longer to heal. We did laundry had lots of visitors and family come up and see us. Along with lots of tears and support given to our little family.
Sunday was a day that was needed. At primary’s they have their own little branch that meets each Sunday for about 30 minutes to take the sacrament and have a speaker. This Sunday was fast Sunday. Jeff and I both needed this deeply and man what a difference I personally felt after having a day of peace and rest and time to focus on HIM, Our Loving Savior, instead of the worldly problems. It was nice to just spend time with our whole family with minimal interruptions.
Monday May 2 - Was still just a lot of waiting for labs and just making sure everything was going well. As we were waiting for lab, infectious disease decided that maybe they would check and make sure Tanner’s immune system was functioning properly. Although this test took a couple of days to come back, they still wanted it tested. As we were waiting for the Biopsy of the lymph node to come back the ENT Dr.s did not want to do anything until they had a report to make sure that Tanner did not have Lymphoma because you don’t want to cut into a possible chance for cancer unless you know what’s going on. We also saw the GI Doctors who spoke with the radiologists and looked at Tanners history and decided it would be best to get an MRI on his belly to better look at that mass – along with checking his whole belly for anything else. The MRI was scheduled for the next day – and because he needed to be sedated again that meant NPO after 6 AM for our T- Man.
 |
| 5.2.2016 Happy 5 months baby boy! You are such a joy in our lives. We are glad that we are getting you back to happy and healthy. Yes we are still at PCMC but he has finally gone 48+ hours without a fever, which means he is responding to the meds. Our wonderful team of doctors are doing everything to make sure we know what caused his fevers all along to make sure that if he gets sick again we wont end up at PCMC again. Thanks for all the fasting and prayers in our behalf. They have been felt and are being answered. #toughliketanner#Tmantough #jolleyfamily2016 #PCMC |
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