Chemo Day #4! -4 Days till Transplant

HAPPY LAST DAY OF CHEMO! T is going to be so Happy to not have to be hooked up to lines all day! We so need these days of rest. T has been still doing awesome today, he has been happy, playful, little sleep and picky eater but still eating. He has been a little more restricted on space today because they wanted him on the heart monitor for 24 hours. The reason behind this is early Sunday morning (like 4 A.M) T's heart rate drop to the very low of normal range and they are not sure why it did that, so they wanted to monitor his heart for 24 hours, especially while sleeping to make sure they are not missing something. The Cardiology team came in and talked to us and listened to T heart real close. After they listen and saw him, they did not seem so concerned and think it might have been a one time thing, but you can never be to careful. They will come let us know what they think tomorrow. Other than that, no other changes for the day.

Last official dose of Chemo is at Midnight tonight!!!

***side note- the doctors did say that this medication effects do have a bit of a delay - Things will get tougher more likely day . But 7-14! They also said he looks awesome and doing great for how much/hard the chemo is hitting him. So they are happy with how he his doing. AND to remember that he is not fighting a Cancer so the Chemo is slightly different but not by much!***

****TO TANNER: You have been so brave the last four days, and so good and patience. You have been hooked up to IV lines no stop and they have not stopped you. They maybe have slowed you down a bit, but you have still love to get down and play. You have taken lots of naps, because they have been given you med to help you relax. We still have time before signs start to show. So i still get a few more days to comb your hair. You hair and cuteness is the talk of the unit. All the doctor have commented on how amazing your hair is. I am sad to see it go - you have had a lot of hair since day one! It is also a pretty color. I know you don't say pretty for boys, but I don't know how else to explain it right now. I have this deep hope down inside that it will come back in the same as it is now. I know it probably wont happen but it worth hoping right. I love you! Love mom!****


Here are some pictures from today!

T Loves to Talk on the phone - I think he is calling for someone to come take him out of this room! :) 

So Funny Thing about these pictures- T had music therapy today! He loved it... although he would not show it in his face with a smile! This was seriously his face THE entire time! He is such a tease! 

Happy Mothers Day! Chemo Day 3 - 5 days till transplant

I first would like to start of by wishing all the Mother's reading this blog, HAPPY MOTHER'S DAY! I hope you all had a wonderful day because each of you deserve it! I was able to attend the church at branch they have here at PCMC, and the speaker spoke about Mother's and used the reference of a talk given by Jeffrey R. Holland. Oh that man, he know just how to say things! I will be referencing it here, I will give you a quick summary BUT I encourage you all to read it if you have not yet. He talks about four words, Bear, borne, carry, deliver, that not only describe what the savior  and what he did for us but also how the words relate to that of a Mother! Oh, how i believe this to be so true! Our moms delivered us and carried us through all of our trails that we go through, weather we are little or old. They bear our same burdens.  I can fully see this in my life right now with my mom, mother in law and siblings, in laws, nieces, aunts, cousins and friends.  They are all carrying ME through this bump in the road with Tanner. The call and text to strengthen me, they help get my mind off things, they think of questions to ask that I don't, they are willing to come sit with me or just tanner so I can leave for a bit or have some relax time. So Mom's, Sisters, Aunts, Cousins, Nieces and Friends - THANK YOU! THANK YOU! THANK YOU! Each of you mean the world to me, and are all a wonderful example to me. You all strengthen me, lift me, cry with me, laugh with me, help me see the bigger picture and SO SO much MORE! I LOVE YOU ALL!
   ** Side Note for T-Man to read later in life when he reads this blog - This is Mother's Day #2, I have spent with you at PCMC. BUT YOU ARE SO WORTH IT! LOVE YOU! and you better make up for it! ;)***

Chemo Day 3 - It was pretty much the same as the past two days! T is still happy, and staying strong for his Mama! Jeff is starting to feel better today and we were able to spend this mother's day together! I was also able to spend time with Caroline. It was so nice having C here, and I truly think she helped T-Man so much today. He was so happy to have her back here to play with him. We have one more day of Chemo!(Hopefully) Then the hard parts set in, the chemo will still be working on T-Mans little body over the next week and that is when the real FUN will begin. Transplant is set for Friday, Most likely in the afternoon! Thanks for all the kinda comments you all gave me today! I appreciated each one of them.

Day 2 of Chemo - DAY -6 till BMT

Today was a pretty good day! More Rounds of chemo done, more sleeping, eating and playing in our room. Jeff was still sick today so he stayed away, so it was a bit rougher of day on me because I am one of those moms that hates to leave her kids with anyone else but family. So I did not leave the room as much but Tanner was such a good kid today., so that made it easier. He is was being his normal self this morning, although early after noon he seem a bit more tired and irritable and his eating has started to slowed down a bit. My mom and niece brought Caroline by tonight and I think that saved us all. T was so excited to have her come in and play with him, and I was happy to have someone else entertaining him and more eyes to help me watch him for a bit.

There was one problem that occurred today and COULD effect T's Chemo rounds and Transplant. After T's first round of chemo drug #1, they had to collect bunch of labs after for the next four hours. Those labs were to be sent to Seattle to a place up there to run the blood and make sure we have T's dosing right, so his numbers will be in the right range of number for transplant to reduce his chance of complications with the transplants. Those labs where taken to the lab here to be packaged correctly and sent to yesterday afternoon to get the results today. WELL, THEY NEVER SENT IT OUT!!!! Our Doctors were so upset,(is might be and understate of how mad they were) cause without those results they don't know for 100% that we have his dosing right. The doctors spent a number of hours on the phone today with the lab in settle and with each other (since it was the weekend only one of out doctors were here) to do the math and calculations and run some numbers that they could the make the best possible decision without those labs. WE HAVE THE BEST DOCTORS. (One doctor here, one Dr. was on vacation and still help us out, and the other doctor, our primary BMT DR, came in at 10pm on Saturday night to talk to me about everything and make sure I was OK.) They did change his dosing just a little and are still sending out the labs on Monday and will get the results Tuesday. Its a blessing we have 3 days of rest before transplant because if the numbers are off they may have a chance to still do some more chemo if needed.  So if you want to include something extra in your prayers for us, please bless that we have his numbers right so we wont have any complications with the transplant. I was not super nervous about it until tonight. I was probably in Shock- but I TRUST our doctor greatly that did their calculations correctly and they will make what was wrong right and make sure they are doing the best for Tanner.


I didn't take very many pictures but here are a few that I did take!

I promise I don't have a black eye in this picture - Just dark circles from not much sleep! ;)

Day 1 of Chemo - Day -7 Till BMT

Today was one of those day where I wish I could just have let Tanner be a 17 month old boy and run around out side.

Don't get me run, he was still very much a 17 month old and played all he could in our room, but oh how he longs to go outside already... He will be very happy the day he can leave our room and even more happy he can go outside!

Chemo day #1 was Pretty great, I was expecting worse. Tanner is receiving 3 different chemo drugs over the next four days. So my though was 3 drug in the morning he is going to be horribly sick by night. But NO! T has done amazing, other then being cooped up in his room. He has not been sick today, and has had his moments but still done so much better than I expected. So now I am fully expecting tomorrow, Day 2, to be Horrible.

Tanner is pretty much hooked up to an IV all day over the next four days! Our days start at 6 AM with Chemo Drug #1. This drug is given every 6 hours and has a run time of 2 hours. (16 Doses Total) After that drug comes Oral medications and oral mouth care(which is done 4x a day if possible) We dont get much of break in between Chemo drugs. Chemo drug #2 starts at 9 AM  and has a run time of 30 mins. This drug is given once a day. (4 doses total) Right after that T is given medications to help with pain, nausea, and reactions (Benadryl). Those drugs probably helped us a ton today because T was never nausous and he was more sleepy- He took 3 naps compared to his usual 1 nap a day. The medication are shortly followed by Chemo Drug #3 at 10 AM. This drug has the longest run time of them all. 8 HOURS! And during those 8 hours, T was given Chemo Drug #1 Dose 2/16 and more medications for pain, nausea, and reactions. And right as those 8 hours end for Drug #3, Dose 3/16 of Drug #1.  Both Jeff and I took turn leaving the room for a break, playing with Tanner, and catching a little shut eye. We are both holding up pretty well emotionally. I am finally starting to feel better. (Yes, i got sick on Tuesday w/ a cold/sinus infection.) Jeff started to feel a little under the weather tonight, so I sent him to bed early o he can get some good night rest and hopefully it will pass by tomorrow. *** EDIT - Drug number 3 is not an actual chemo drug, Its a drug given along side chemo to help the patient Immune System. But is the drug is that you can have a reaction too due to the drug being from Rabbits'***

We are extremely grateful for the day we have had, but our hearts are hurting for the loss of one of Jeff's amazing, caring, wonderful, most loving Aunts. She had been battling cancer for the last 4+ years (3 different cancers) and lost her long battle yesterday afternoon.  She leaves behind her Husband and Daughter. Stephan and Kayelee, WE LOVE YOU TWO! We wish we could come wrap our arms around you during this time. BUT just know, I firmly believe that Rhonda, Grandpa Jay, Grandpa Charles and my Grandparents Marshall and Bradshaw are all surrounding Tanner and Our family right now during this time. I can just image Rhonda wrapping her arms around T and telling him its going to be OK! She would be the Best ones to know what Tanner is about to go through, although some of the others have lost their lives to cancer as well. We are extremely grateful for our knowledge of the Gospel and that WE KNOW we will be able to be with our loved ones again some day!

**** TO TANNER! This is a just a quick note but you tired to kiss you nurse today! ;) You hit her and we told you to say sorry by giving her a hug. When we told you still at home with sister you have to give a hug and a Kiss. So we know that is why you did it but it still funny to us to say you hit on your nurse! Also you were not meaning to be mean to your nurse, she was in your way and you wanted her to move. LOVE YOU****

Thanks for the Prayers, Thoughts and Texts sent our way today. They were felt, and we are extremely grateful for them.  Here are some pictures and videos of our day! Enjoy!

BMT Day - 8

5.11.2017 Day -8 till transplant! Tanner boy got his line placed today and was admitted to the ICS floor. We have waited for this day for 1 year now (T was diagnosed on 5.3.2016 with CGD)

It's has been a Whirlwind of emotions this past year. He would do great and then he would have his moments and not do so great. Then the many thoughts of are we doing the right thing, or doing the wrong thing would always play into our minds. We know that this is what he has to do to get his disease out of him. And We extremely grateful for modern medicine and that my son disease has a cure. It's just hard to prepare yourself to watch your 17 month old son become so sick.

We are so grateful for our team of doctors and nurse and we are excited to get to know them better as we get tanner better than he ever has been in his life.
Words cannot express how grateful we are for the many prayers and the much-needed support we have received from our many family members and friends. We are extremely grateful for Tanner's bone marrow donor and the wonderful gift they are giving our son.

We start chemo bright and early tomorrow morning at 6 a.m. and will continue chemo for four more days. We'll have three days of rest and transplant day will be on May 19th.

XOXO

****TO TANNER: My sweet boy, Today you yet underwent another surgery. Hopefully, this is your last for Disease and you life, but your a boy so probably not! You have the hardest time coming out of it. You just cried and cried and just wanted to sleep. We finally let you get back to sleep and did much better later. You didn't have much pain, or at least that we could tell. You still got down and played for a little bit. We did give you pain meds just in case. We glad we are here and we are ready to get you better. LOVE YOU****

The Time has Come!

"Be Still my Soul, thy Lord is on thy side" this song has been on repeat in my head so much the last 24+ hours to calm my nerves and to give me so much comfort.

On 4.12.2017 we got the call that we have a donor for T! Oh the tears of joy and saddness ran down my face. I am so eternally grateful to that person, who ever and where ever they may be. We have a number of doctor's appointments leading up to the start of Transplant. The plan for now is T will be admitted into PCMC on May 11 if all goes accordingly. We are extremely grateful for all the love and prayers in our behalf. They are felt daily.#Tmantough #toughliketanner #letsgetthisboybetter #BMT #jolleyfam17

Allowing the Dust to Settle (BMT UPDATE)

Here we are almost a year away from the first signs of infection with T! He has been doing good on not getting bacterial or fungal infections. Viral infection on the other hand are not so great.

As most may know, T number labs went abnormal the end of January, well because of the abnormality of them this made our team of Doctors concerned. So after many more blood draws and a Nuclear Med scan, a Ultrasound and a CT (all done here at home :)) We still had NO ANSWERS! So now a month later his labs are slowing improving but we had know idea what cause his labs to be so abnormal. We met with our Team of Doctors a PCMC about 2 weeks ago. They want to make sure his numbers keep improving before moving forward with Bone Marrow Transplant. We did a nose swab to see if he maybe had something Viral going on, and that came back + for a small viral. So that, I guess, is a possibility for an answer for us on his labs being abnormal.

We also met with our BMT Doctor who gave us some answers and guidance. A couple things are holding us back, one is T labs, he is technically not clear for BMT at this time. We want him as healthy as possible before we make him measurably sick. It increases his success rate. Also another thing is T is not 2 yet..... this is were it gets tricky. Most doctors recommend that the patient be the age of 2 before starting BMT. That is not always that case, but is still a possibility in our case. Since T has been doing well they may want to wait till he is older but then the factor of his disease and the fact that his results showed more of a complicated case (Meaning that some people with CGD have some function or more function of WBC, where T's show little to no function.) So with that more doctors become involved in getting it approve to start BMT before the age of 2.

We have another blood draw this week, and we are hoping and praying that his labs have improved greatly and that we can get some answers on where we stand with BMT. And hopefully we are on track to move it forward with this year. But if not, it maybe next year before we get this disease out of our system.

As for Myself and the rest of us, I am really trying to stay positive during all of this but it gets so hard sometimes. I guess I am in need of learning to have more Patience. And this is for sure teaching me. I am one who like answers as soon as possible and kind like to plan my life and I feel like this disease is just not allowing me to do so. There have been many times that I have wondered if I am doing what is right for tanner. Am I making the right choices for him, or do I just wait till he is old enough to make his own choices, but then I know I still have to keep him healthy as possible and that still makes me be the mean mom and not allowing him to do what ever he wants.

 I honestly cannot speak for Jeff, he seems to keep me in check. He is very strong and level headed. He seems to always know what to say and how to say it to make everything seem right. I know he is nervous about doing BMT but he also just wants it done so that we can just let our little boy be a boy.. although that time will be in like two years.

Caroline is doing great. She is very loving and caring for all of us, and when it comes to Tanner she is even more concerned. If have to go to the doctor or get blood work done she is always wanting to come and is actually sometimes very helpful.

While I am playing with both kids, my worries see to wash away, I don't think about Tanner's disease and I don't worry what is going to happen, I just enjoy the moment and take it all in with one big deep breathe to help me keep pressing on and pushing forward.  Its crazy how the joy and love of kids can do that to you but I, for one, am extremely grateful for it!

Sorry I was not as good at updating as I had hoped. I update more on our Insta and Facebook. I am going to try and do better about a least updating monthly, even if it is just a short one!

Here are some pictures for fun!

Day of the Many Doctor Appointments

Disney on Ice Trip

First of many Picnic's

He Had to have a whole one all to himself.. as you can see the little cut up bits I did for him are still on his plate.

She is growing up way to fast.