Clinic at Primary Childrens

Update from Amber:

"Yesterday's trip went really well, especially compared to last week.  He was so brave!  When we got to the parking garage at Primary's, he said, "I don't want to go in there. " Luckily his numbers were all good, so no transfusions this week!!!! YAY:). That made it so our time spent at the clinic was not very long at all.  Reiss, and mom and dad were VERY  happy about that!

Reiss'  ANC ( infection fighting cells)  is really low (100). So we have to be extra careful.  If he gets a fever at all we will be admitted into the hospital. 
We also found out today, at this point in his treatment, the doctors expect there to be less than 1.0 percent of leukemia in his blood cells.  If it is higher then that, then they consider him high risk.  Well, Reiss is at 1.1 percent (that dang .1 percent!).  So, they are planning on treating him a little more aggressive for longer then first planed.  We will know more about his road map to treatments after our appointment on Mar. 11, when they do another bone marrow biopsy.
Thanks to our connections (Uncle Landan) we were able to stop at Olive Garden and eat lunch.   Landan had us in the back, in a secluded room, and he sanitized everything before we got there.  It was so nice not having to eat more fast food /drive thru food on the way home!"

Uncle Landan, and Reiss, at Olive Garden.
Handsome Boys!

Weekend recap

Granny and Papu came up for the weekend and that always makes life a little better. Granny said that Reiss is very much a mommy's boy lately.  Which is totally understandable considering how he feels.

Loving on his Papu. 

Aunt Karen (Kenny's mom's sister) made the kids these amazing blankets. They LOVE them! 

Thanks Aunt Karen!

Snug as a bug...

She made the most perfect blanket for Reiss.  John Deere for this tractor loving boy! 

At first, Reiss would not let anyone touch or LOOK at his blanket. They finally caught him in a good mood and snapped this picture!

Showing off his new blanket! Look at that cute ROUND face!
Amber said he has about 30 minutes each day where he is happy and talkative. The rest of the time he is moody and irritable and doesn't want anyone to talk to him or look at him.  This was during one of his "good moments."

Hard to tell in this picture, but his poor little belly is always SO bloated and stretched to the max

This little tray has become a lifesaver! 

Sitting at the table in his booster seat is too painful for his little body (hips) so he gets to eat on the couch! It's much more comfortable for him.  Spoiled little boy!! :) 

One of MANY meals in his "spot".

Amber said they weighed Reiss and his big brother Tayger. Reiss is only 2.5 pounds lighter that his 4 year old brother! He is gaining weight fast!! She said it is unreal the amount of food he can put down. Its a combination of the increase of appetite and the water retention from the steroid. He will eventually lose it. Until then, thank goodness he has an older brother so he can borrow some bigger clothing! 

Here is a sample of what he has eaten in just a few days. 

FOOD JOURNAL

2/22

5am- Mac n cheese, hotdog

9am- biscuits n gravy, cheesy eggs, Blue berries

11:30- Mac n cheese, hotdog, pears

2:00- ham sandwich, cheese, Salami, chips

4:30- cheese quesadilla, rice, blk Beans

8:00- 1 1/2 ham sandwiches, cheese, salami, cole slaw

2/23

4:30am- ice cream, 1/2 ham sand..

10:00- 2 pancakes, cheesy eggs

10:30- ramen noodle w/ 1 egg in it

2:30- ham sandwich, salami, apples

4:00- 2 gogurts

6:00- ham sandwich, Doritos, Grapes

7:30- chips salsa, cottage cheese, Apples

2/24

3:00am- 1 1/2 ham sandwiches, Grapes, salami, cheese, cheeto

10:30- Mac n cheese, 1 1/2hot dog, Blue berries

1:00- 1 1/2 ham sandwiches, 2 servings of cole slaw and Grapes

4:00- chips& salsa, cottage cheese

7:30- bean/cheese quesadilla, pears

8:30- ham sandwich, salami, cheese

They have clinic and chemo at Primary Children's today. Lets hope for good numbers and counts. On another note, Amber said she can tell his hair is starting to thin and change textures. It's not coming out in clumps yet, but a shorter hair cut is probably going to happen this week. Crazy how fast that happened! 

A better night.

Yay!!! Reiss had a better night! He finally stood and walked for the first time in 24 hours. He filled a total of 12 diapers yesterday (his tummy must feel SO much better!)  and hasn't cried!! He is actually a little happy! His 3:00-6:00 nap must have really helped! 

Feeling a little better last night.

Happy, sad, and miserable

Yesterday ended up being a ROUGH day! :( He woke up at 5 am wanting ham sandwich, salami, cheese and chips. He then went back to bed. He got back up at 10 am and wanted pancakes. While eating pancakes he wanted mac and cheese and hot dogs.....

This is the period he starts to gain weight because the steroid makes him hungry hungry!

Hungry boy! You can see his little face filling out.

Happy one minute, and sad the next :(

This next picture just breaks my heart. This is the text I got from Amber last night:

"It has been a very rough day!! Reiss has been in a lot of pain. He can't walk, and if I try to get him just to stand, he cries :( They said the steroids would make his joints ache, but I didn't realize it would be this bad. It breaks my heart to see him hurt so bad. His stomach is still huge (bloated) from being constipated so he is also very uncomfortable from that.  He cries to me that his body hurts, and this is even with being on pain meds! On a positive note.... his appetite is still enormous!!!"

Looking so sad and miserable. Heartbreaking.

Please continue to keep this little guy and his family in your prayers. I can't even imagine how heartbreaking it must be to see this little boy so sick. :( Kenny had to go back to work yesterday and will be gone until late Sunday night. So, Amber is on her own trying to care for, and comfort, her baby boy. As well as, be a mom to her other two. She could use prayers as well. I'm sure of it! 

I hope and pray today is better and that our Reissy boy (and his mom) will get some relief and rest. 

A long Day!

It was a blue sky, beautiful day in Salt Lake City, even the air was clean and clear! Warm and Spring like, but I can assure you that this is the last place little Reiss man wanted to come back to.... Other than the fact that he got to see Auntie M again (which is hardly true... he told me to not look at him:)

A Long day for the Timothy's...
Reiss's levels came back low, so Amber and Kenny headed to Primary Children early to get a start on the procedures that Reiss would need in order to get his levels up (Platelets and Red Blood Cells). First thing was Platelets, then Reiss was scheduled for another Spinal Injection of Chemotherapy, this is very common, especially in the beginning because Leukemia tends to hide out in the spinal fluid. Reiss had to be put under in order for this do be done, and by the time he woke up he was a HUNGRY BOY! In my search to find where Amber and Reiss were waiting in recovery, I could hear Reiss's scratchy, groggy voice, "noodles, I want noodles... no I want a ham sandwich, and chips, and cheese!" As soon as the nurse showed up with noodles (Top Ramen) and I went and retrieved his ham and cheese sandwich, he had already decided he, too, wanted a Hot Dog Sandwhich!

It was so adorable, to watch him eat his spread of food. He had it all sitting on he and his daddy's lap. Slowly, and meticulously he would take a bite out of one slice of cheese, then the other, then his sandwich, then his chips and then his noodles. One bite from each, and then he would start the cycle over, until, in fact, this little boy ate ALL of his food.

They spent two hours getting blood after a long morning. In an open room, curtains dividing each transfusion station, which consisted of two Recliner chairs and a Television. It kind of broke my heart to see this room full of children, at all different levels of their recovery and treatment along side their Hopeful, unconditionally loving parents. I sometimes feel like the worst supporter for Amber and Kenny, I find myself constantly forcing back tears, and fear and questioning "why"!? They are strong, and amazing! I am in awe of Amber, and incredibly inspired by her strength as a mother. I look up to her so much, and think that she is one of the most incredible women I have EVER met in my life!

They were at the hospital all day, from noon until 8pm, but were able to go home, which Reiss kept asking for! Kenny, such a good dad, had to get up and start work at 3am, I asked him how his boss was  dealing with his time off, and Kenny expressed so much gratitude for the support and understanding of those he works with! Such a blessing!

So Reiss will be back to Primary Childrens on Monday. If all goes well during the week, and his levels stay where they should the treatment time will be a lot shorter. He will come in for Chemotherapy and thats all. His next spinal fluid Chemo, will be early March.

Sweet Sweet Little Reiss

No news is good news...

Now that the initial diagnosis and shock have subsided, there isn't much to report on. Reiss is doing okay and is happy to be home.  He is very weak and doesn't have much energy. His body aches and he complains about his knees, back, and shoulders hurting. Amber said its probably a combination of the cancer and the chemo. He walks with a limp and has a hard time running. He will get up for a short time to play, but tires out quickly and wants to be held or finds his way back to the couch. Such a difference in this active, busy toddler.

Lining up his trucks and tractors with daddy and Granny

He hasn't asked for pancakes in days. His new cravings are: ham sandwich, salami, cheese and ramen noodles. His appetite is largest in the mornings and tapers off throughout the day.

Sweet, sweet boy!

He did get outside for a few minutes and was able to ride his bike and play with his siblings and cousins (hence the mask) for just a few minutes. The fresh air and sunshine were good for him.

His home health nurse, Melissa, came and took blood today in preparation for his visit to PCMC tomorrow.  His counts are really low so he will be getting blood transfusion, platelets, a spinal puncture, and chemo tomorrow. Usually his chemo appointments will be every Monday, but because of Presidents Day today he goes in tomorrow (Tuesday) at 1:30.  This will be the first outpatient appointment, so Amber doesn't really know what to expect. I guess we'll find out more tomorrow!  

So much LOVE

After missing school for several days Amiah and Tayger were SO excited to go to school with their cute Valentine's boxes! I know they had a fun day!

Thanks to Granny, Papu, and Zack the kids had the cutest valentines and boxes! 

There has been SO much love, support, service, prayers, and well wishes shown toward the Timothy Family. They are surrounded by wonderful people who are ready and willing to help. The angels (you know who you are) who cleaned her house, did her laundry and got her home ready to bring Reiss home...THANK YOU! Amber is so appreciative (and slightly embarrassed) at your generosity and service. For all the others, who have donated money, offered other services, given gifts, called, texted, visited, and most importantly prayed,  THANK YOU! The outpouring of love and support has been amazing, and none of it has gone unnoticed! They love you and are SO grateful to be surrounded by amazing friends and family. 

Happy Valentine's Day!

A perfect homecoming...

It was a LONG ride home! They were suppose to get home at 7:00, and instead got home at 10:30 pm.

Reiss was a trooper for being in the car for SO long!

But it was OH SO WORTH IT!

 This picture melts my heart. 

Reiss loved showing off his war wounds...

Tough little guy!

Very curious about his PICC line

Just as any 2 year old should,  he PLAYED!

They laughed, ran and giggled.

Tayger kept rubbing Reiss' arm and saying "I love you buddy!"

They opened some presents...

and had a late night snack!
It was a PERFECT homecoming!

Love these beautiful kids: Amiah 7, Reiss 2.5, Tayger 4

Woke up this morning and had a yummy breakfast! Pancakes of course!

Not just pancakes,  but BLUE pancakes! Thanks Granny!

And so this journey begins...

ALL the meds they forgot to  grab at the pharmacy at PCMC. 

Going home...

UPDATE: Apparently going home without conflict would have been TOO easy. They got into Spanish Fork canyon when Amber realized the Doctors didn't send them home with ANY medicine.  SO they had to turn around, head back down into Spanish Fork, call and PCMC. Because the pharmacies in Price wouldn't have all the meds he needs they had to head ALL the way back to PCMC. :( Bummer!! What should have been 2-3 hours turned into 3-4. 


Busy this morning with chemo and all the doctors and nurses getting him ready for discharge. 

Got a good 2 hour nap.

Out of his tiny 8x13 room the first time since Friday! He was SO excited!

Their first stay at PCMC will be one they will never forget. One that has changed the course of their lives for the next few years. This room will be the place they will remember hearing the devastating words,  "You're child has Leukemia."  

Adios Room 4410!

Can you see the smile in his eyes! Riding down the elevator! 

SOOOOO EXCITED to be going HOME!

Watching the fishy

Clean, fresh air!! Oh wait.... we are in SLC!

He loved being outside even though it was only for a few minutes. 

He was so excited about all there was to see!

I'm going HOME! 

Goodbye Primary's! 

Thank you for the most amazing doctors, nurses, facility and care. 

We are so grateful for all that you did!

Tuesday...

(Sorry for the late update....)

Today was a good day! Pretty low key and quiet. Reiss was not hooked up to anything (pulse ox, chemo, etc) so he was free to move around the room.  Many hours were spent in front of the window watching the construction site across the street. Cranes, backhoes, track hoes, bob cats.

A dream come true for this tractor loving boy! 

Watching tractors and cranes with dad

He seems to be in good spirits and seems to be doing great. Besides being moody from the steroid he is feeling GOOD and STRONG!

Look at those MUSCLES!!!

One of the best parts of the day was being reunited with these two! Amiah and Tayger were SO happy and excited to see mom and dad! I think mom and dad missed them just a little as well! :)

Happiness

They were SO happy to see mom and dad, but were very sad they couldn't go up to the room to see their little brother.  They waved up at him from outside, but Reiss only wanted to be outside with them. Thank goodness they will all be together soon! Reiss is GOING HOME!!

Amiah age 7, Tayger age 4

Granny, Nana and Zack stopped in for a visit. He sure does love his Granny!

There's not much in this world that is better than Granny!

Grateful for family!

The family support person (not sure the correct title) made a sweet little book for Reiss to take home for his brother and sister. Amber read it too me and it made me cry. Such a sweet and simple explanation of what their little brother is going to go through, and what Leukemia is. 

News/Tidbits/Info:

The discharge nurse came in today and they are going home TOMORROW (Wednesday)!!!! They are antsy and ready to be home! So after a chemo treatment in the morning they should be on their way out of there! The good thing about ALL is that most of the chemo can be done as outpatient. They will return to the clinic on Mondays, and as long as counts and things are good he should be able to go home. This is wonderful news.  

Another blessing today was finding out that Amber's good friend, Melissa Nielson (sp?) is going to be his home health nurse. I am so happy about this and I know Amber and Kenny are too! It will be good for Reiss to see her familiar face! She will come twice a week for blood draws and will be available for any questions Amber and Kenny might have. 

An interesting thing Amber told me was that they have to be very careful when changing his diaper or coming in contact with his bodily fluids.  While getting chemo, and 48 hours after finishing it,  they must wear gloves during diaper changes, and if he leaks out of his diaper it is very important to remove the soiled clothing and rinse your skin with soap and water. It breaks my heart that this toxic chemical is being pushed through his little body, Yet it is harmful for the caregiver to even come in contact with it. Thank goodness for modern medicine though. We want our boy BETTER! 

Reiss won't be able to go out much when he gets home. They need to limit his exposure to germs and large crowds.  No church, no stores, no places with lots of children or lots of people. Being around his siblings is, of course, just fine...they still have to live their life! 

Amber and Kenny seem good. She sounded great and they seem comforted and positive.  The initial horror of his diagnosis has diminished a little, and they are ready to start this fight. Fight, Reiss, FIGHT!

Finally, MY favorite part of my day was face-timing with Reiss! Why didn't I think of that sooner? It did my heart good to see his playful smile, have him proudly show me his owies, and make my kids giggle with his new "fart trick" with his oxygen. This little guy is amazing. 

He is going to kick Leukemia to the curb! There is no doubt in my mind. 

Some pictures from today...

Echo from earlier today...

A HUGE balloon! FUN!

Silly Boy!

He has been SO hyper because of the steroid. 

Just what a two year old needs... a REASON to be hyper and moody! :)

Just what the mom of a two year old needs!

He must be feeling better because he keeps saying:

 "Mom, Im not sick anymore. Let's go home!"

A much needed afternoon nap.

Thank you Uncle Landan for the yummy Olive Garden salad.

 Not even a glimpse of what Amber and Kenny learned today. It's amazing to think they will be pros at all of this in no time.  I'm sad they have to learn this, but I know they will do an exceptional job. Reiss is lucky to have such amazing parents.!

Learning Curve

My heart has been so full today. When I talked to Amber she mentioned that our cousins, Joe and Alicia, brought in dinner from their delicious family restaurant Bella's.  Micah brought them "Kneaders" for lunch, and Landan brought in soup, salad and breadsticks from Olive Garden. Not to mention knowing Amiah and Tayger are in the best of care with Granny. Amber was so grateful! Since I got off the phone with her, I just can't stop crying.  I am SO thankful they are surrounded by our  wonderful, supportive, AMAZING family and great friends.  Living in Colorado, I can't help but realize how much harder this would be if they did not have this local family love and support. So very grateful for all of you! Thank you!