I want to begin this blog by saying something that I cannot say enough of these days. THANK YOU!
We are so very blessed with amazing people in our lives. I cannot ever repay you all for the things that you have done and continue to do to help us out during this devastating time in our lives.
I wish that I could thank each of you individually because you deserve it. Please just know that none of it goes unnoticed we are so appreciative of the Love, prayers, kind deeds, service, thoughts, comments and concerns.
I know that I have not been able to respond to many of the comments, texts, and calls. Each is recognized and appreciated. Please don't give up on us. We are trying to adjust to this new life and get comfortable with the attention it brings. THANK YOU! ~
P.S. please scroll to the bottom of this post and see how to participate in the countdown chain!
Just look at this group of family and friends that couldn't wait to shave off all their hair to support Tristan.
The Bold, The Bald, The Brave and The Beautiful! My heart is so full that I don't have the words to express the gratitude I feel.
Kevin Buman "The change of season and the haircut are dedicated to Tristan Chidester!!! You're doing great Tristan. Go PADRES!!! "
This week has been another roller coaster. Tristan was able to come Home Monday afternoon after his sodium stabilized. Unfortunately the RSV, Pneumonia and SIADH (low sodium) took a toll on his body and his Blood counts were not high enough to continue with the 5 day inpatient Chemo that was scheduled to begin Tuesday. Bittersweet because it would postpone treatment but give him the "break" that he needed. At Home we continued with the IV TPN (vitamins and minerals) through his portacath for 18hours per day, because he was not able to eat due to severe mouth sores caused by the first Chemo. He also had IV antibiotics that I administered through the port every 8 hours. He has several other medications tat he takes to make things more comfortable that are typically on a 4-6hr schedule. This made it a little hard to rest, besides the fact that I am OCD about taking his temperature now.
These few days at home made me feel like we had a newborn in the house again. It consisted of him sleeping, waking up screaming with pain in his back, me waking him to change his TPN giving meds and helping him to the bathroom. He was also very emotional, crying randomly and asking why things couldn't be normal again. This poor kid was exhausted in every way Physically emotionally and mentally!
Thursday Home health came to draw blood for the Counts. James our Nurse called to let me know that Tristan's counts were higher than expected and we could start Chemo the following morning on Friday.
Again, bittersweet. Friday Tristan and I checked into the ICS at 10:00. He immediately had very bad back pain and began to cry and roll around the bed in discomfort. I talked with the Doctor about this chronic pain he had been having and we discussed the possible causes. They gave him morphine, and decided that they needed to take him downstairs for an X-ray on his back. The X-ray showed the spine as normal and no bowel obstruction. They called Dr. Randall (Orthopedic Surgeon) to see if he would like an MRI to check for anything else suspicious. He is out of town right now so we will see him on Monday. (Yes we continue to play that waiting game) I am learning many things, including patience, how to keep a medicine schedule, Doctor and Nurse Lingo, how to read his body language also how to do all of these things with NO sleep.
Friday Night Chris Stayed the night. We arrived at the hospital at 10:00am and they did not start the Chemo meds until 8:00pm. Chris said this was the easiest night since this all started.
This round of Chemo is a little easier on his body and has less nasty side effects. (No mouth sores)
This Chemo has 2 medicines and he still has to go to the bathroom every two hours but he is walking on his foot now so he needs less assistance. He did not get nausea (Until today) and was able to sleep well with the pain medication and they gave him some Melatonin.
Saturday, very tired still catching up on all his sleep now that he can actually really rest. I stayed Saturday night and it was very easy considering the "Newborn" schedule we had at home. It is nice in the hospital because I don't have to give all the medicines and set the alarm for every few hours.
Saturday we had a Physical therapist come in to examine his back. He was so tired he did not want to get up. She was asking him to do all kinds of things such as "lift your leg, Touch your toes etc.."
She kept asking him if that hurt his back. Finally Tristan just said to her "Can you just leave me alone, would you just go away"! -Oh my heck. I was embarrassed but could you blame him? He has been through so much! I just sat down and laughed a little while she continued to make him do things.
Saturdays Chemo went smoothly too. No nausea, up every two hrs to use bathroom, back to sleep.
Sunday the nausea came. He did throw up some and felt better after. It did not last long and he was feeling well enough after to eat a small amount of Chicken noodle soup. He was up a little more today but towards the evening really tired again. They started Chemo at 4:00 Today and so far so good!
I am hoping that this round will be easier and he will be able to feel more like himself when we go home on Wednesday. His spirits are not as high. He is so weak and hardly smiles. He just does not act like Tristan. That being said. My dear friend Amy is making a countdown chain for him. Please participate! I think he will love to read these things...
Here is Amy's request
Hello to Tiff's friends & family - I NEED YOUR HELP
I am working on a Cancer Count Down for Tristan. Tiff has expressed that he is getting a bit blue wanting life to just be normal again. Tiff and I thought a giant (315 days to go) paper chain counting down the end of treatment hanging in his room would help Tristan realize that there is an end in site. But we need your help...we would like to add a loving, supportive or encouraging note from all of his biggest fans, YOU, so that as Tristan counts away cancer he is reading loving and positive words from those cheering him on.
Please email your note to me (on Facebook or at firstname.lastname@example.org) as soon as possible so that we can have our cancer count down chain hanging in his room as soon as this round of chemo is finished.
Thank you, thank you, thank you!