Reiss

Little Man with A big Heart

Thursday, October 17, 2013

I have posted before about, and anyone close to Reiss knows, that if you want his affection and love just act completley uninterested in him.... Unless you are Granny of course!

He has to be bribed to smile in most photos, that I take with him anyway. (Amber was like this as a little one too:) And it is always my biggest goal to get him to love on me! Unfortunately, on most days it goes a little like this.......

Me: Reiss, I am so happy to see you, give me a love

Reiss: NO! Dont sit by me....

(playing hard to get)

ME: Give me a Kiss!

Reiss: WHACK!!!

But he giggled and that made me happy!!!

I was a lucky Auntie and got to spend the day with Reiss in clinic... When I showed up, he of course acted like he really wasn't that excited about my being there... But he was happy to share his cheese in a can and crackers with me and jerky too.... Although he was insistent, "Don't eat all the jerky, because we need to eat it too", apparently I was being a pig!

When the nurses came in to give Reiss his shot (Chemo in his quad) I walked away, partially because it breaks my heart to see his little eyes swell with tears, but also to give the nurses space... Reiss started crying at the anticipation of the shot.... But as they gave hime the shot, he cried only for a brief second, and then I heard his sweet little voice say, "where did Micah go?" It melted my heart, I responded and let him know that I was still there... I went and kneeled in from of him, Mommy was rubbing his leg with ice and he had huge alligator tears still on his cheeks... He said, "Where did you go? I responded by telling him I did't like to see him get shots because it makes me sad.... and he said "but you can watch me get my shot, you can watch it."He really did want me there!

We played trucks, and derby and ate more cheese and crackers... When I got up to go to the bathroom, I again heard his little voice asking where I went... I know that this seems so silly, but this little man with a big heart, melted mine today... It really reminded me about the importance of pure, true, real unconditional LOVE.

This was not all that today reminded me of.... But I left the hospital with overwhelming gratitude for the people I have in my life. I am surrounded by strength, I am surrounded by people to inspire me, and I am part of the most incredible circle of Love. Amber is a viking woman, I always am so impressed by her strength, I am honored to have a sister like her. My parents are incredible, my brothers are pure joy and my sister Erin is compassionate and driven!

This day, Reiss really touched my heart, but I gained a much needed reminder of how lucky I am to be loved, to be part of the family I am, and even though sometimes I might not realize, someone might need me, just to be there, like little Reiss wanted today! ....

DI- Week 4

Tuesday, October 15, 2013

Monday, October 14th

This is the last week of Delayed Intensification!! YAHOOOO!!! Reiss had his scheduled appointment yesterday. He got chemo and a PEG shot. He even got to see cute little Presley! Dr. Lemons gave them some GREAT NEWS! He will finish out this week, coming to PCMC on Wednesday and Friday for his last two shots. Then, he gets a week off! On October 28th, Reiss will start maintenance!!! Maintenance is the last phase in his treatment protocol. It begins with an LP (Lumbar Puncture) and vincristine (chemo) in his port. He will then receive chemo (6mp) everyday at home, and an additional chemo pill (oral methotrexate) on Thursdays. The chemo 6MP is a little tricky because he can't eat for 2 hours before, and 1 hour after, he takes the pill. So there is a 3 hour window that he can't eat. He will continue this daily chemo for the remainder of his treatment... about 2.5 years. It sounds daunting, but it is a relief to be at this phase. He will only have to go to PCMC once a month for chemo in his port, and every 3 months for lumbar punctures. If all goes well! Of course, if there are fevers or sickness he will have to go to PCMC. Let's pray there are very few of those! The next 2.5 years will have it's own set of challenges, but the Timothy family is happy to be at this point in treatment. It means they are one day closer to the finish line.

Amber and Kenny can't thank you enough for all the love and support you have continually shown them. For all the food, meals, money, prayers, childcare, and all the other genuine acts of service on their behalf. They have the best friends and family and are so grateful for all of you!
THANK YOU!

Let's hope this last week of DI goes by quickly and smoothly!!

Cancer buddies. Reiss and Prelsey! Love them.

He kills me with his cuteness! Love that Dora sticker on his shorts! :)

He looks HAPPY today!

Momma's boy!

Stud!

DI drama! Weeks 1-3

Monday, October 14, 2013

Can we all agree that this phase, delayed intensification, SUCKS!!! It was rough for little Presley, and it has been so rough on little Reiss, as well. DI consists of 2 parts. He is in the 2nd part of this phase.

Week 1- Had to have a LP (Lumbar Puncture). He woke up from anesthesia a little croupy. They made him stay the night so they could monitor him.

Week 2- He was supposed to have another LP, but because we was a little croupy the previous week they decided to wait and make it up later. He had home health Tuesday, Wednesday, Thursday and Friday.

Week 3- On Monday, Oct. 7, he had to start his PEG shots again, and if you remember, this means trips to Primary Children's every Monday, Wednesday and Friday for two weeks. This is a dreaded two weeks. Too much driving, too many shots, too many trips to clinic. :( As if that isn't hard enough, Reiss spiked a fever after his clinic visit on Wednesday night. Besides his counts being super low, he seemed fine earlier when he was at his appointment. Shortly after Amber got back home, and started getting the kids to bed, she realized he was warm. A fever of 101 sent him straight to the hospital in Price. Price Hospital isn't use to these cancer kids and their low numbers. They ended up taking him back to PCMC by ambulance that night. It was a very long night and they didn't get into a room until about 7am.

Ambulance ride... He slept through it!

Reiss spent the rest of the week in the hospital. There were a few bumps during his stay. Thursday night, while at PCMC, his port started hurting. He had somehow dislodged the needle. They had to de-access and re-access his port. On the third time they were able to get it to work. Friday night, Amber snuck away from the hospital to take Amiah and Tayger to a play. Granny came to stay with Reiss.

At about 11 pm, Reiss woke up and was hysterical and wanted his mom. Luckily, Amber was near the hospital and rushed over. They gave him a transfusion, and he had an allergic reaction to the platelets. Poor little boy!

Allergic Reaction from the platelets. He will now receive benadryl before transfusions to prevent this reaction.

On Saturday they were supposed to be discharged around 3:00 after his last dose of antibiotic. Amber requested them to get the order into the home health med place so their bulbs of IV antibiotic would be ready. Long story short, they forgot and the meds didn't arrive until much later. So they didn't end up leaving PCMC until later that evening. They went to Heber and stayed their for the night. During his last antibiotic that night, Amber couldn't get the saline to push through his port. The antibiotic went fine, but she wasn't able to flush it. Another call into PCMC. They told her to cap it and then try in the morning. If it wouldn't work she would need to take him back in. The next morning (Sunday), she tried to flush it and it still wouldn't go. So back down to SLC they went to try and figure it out. Again they had to de-access and re-access 3 times to finally get it working! Poor little guy!