Tuesday, May 29, 2012

Chemo While We Wait

We got Trip’s MRI results today at his appointment. The MRI is stable. There is a possibility that the lesions that were affecting the brain matter are no longer there OR the radiologist missed them. (I realize what a huge difference those two are and almost didn’t want to even write that sentence but I want someone else to share in my annoyance.) I’m certain it is the latter since there are no other significant changes – the pituitary damage will never be undone and the orbital areas appear to have the same mass. The question is whether or not the mass is active disease.

Since the PET machine is still down that won’t be answered any time soon. They hope to know by this afternoon if the machine will be working this week. In the meantime, the doctor and I think waiting for the PET scan and results risks the disease flaring up since it would be almost four weeks between treatments, so we are being admitted tomorrow for another round of methotrexate to “hold him over”.

Saturday, May 26, 2012

Family Update

Trip’s MRI was thankfully uneventful. He was brave and it was over quickly. We still haven’t heard from the downtown hospital to reschedule the PET. Obviously it will be the end of next week if next week at all. We go to the doctor on Tuesday for a follow up.

My dad had his prostatectomy on Thursday. I should have been there but thought Trip was having his PET. The doctor said Dad’s was the hardest/longest procedure he has ever done. Trip thinks Pops has a "peeper affection"... what??!? He is concerned about Pops having a "peeper tube" because he has had one and HATES the thought of it. Dad is home resting now. I know Mom can care for him, but I feel like I need a clone. Never have I wanted to be in two places so badly. I’m ready for everyone to get a clean bill of health. I’m ready for a boring life that I treasure. Until “boring” comes along, I’ll still treasure this life I’m blessed to have.

I appreciate so much everyone’s thoughts and prayers for our family. I appreciate those of you close to my parents for checking on them and being there for them. I hope everyone have a very happy and safe Memorial Day weekend. Much love and peace to all.

Wednesday, May 23, 2012

Trust

Trip had an appointment today to get his ears checked. The doctor said they look great… for Trip. They are in no way perfect, but he said from where we started they look great. That made us both so happy we had a dance party in the car on the way home! It gives me hope going into getting his scans since it should be a sign the disease isn’t affecting his ears right now.

Getting scans at Children’s is never easy – emotionally, physically and logistically. I’m sure most of you have read or heard my rants about giving him back to back scans instead of scheduling them both on the same day. After moving his PET scan once, we were expecting to have it tomorrow downtown and his MRI on Friday at Legacy. The hospital called today and said the scanner is down, so the PET will be pushed to sometime next week. We should still proceed with the MRI on Friday since Legacy seems to have their ducks in a row. At least he won’t have to have anesthesia two days in a row.

I’m enjoying this time off from chemo, but there is a voice in the back of my head that keeps chattering. Scans bring up hope, fear and every emotion in between. I want to know where we stand and of course I want good news, but there is that self-protection thing going on where I tell myself not to get my hopes up too high. Also, really good news will mean we go to a maintenance phase. I want that for Trip, for all of us, but last year the “maintenance phase” sucked us into hell with the news that the disease had spread. I’m a little worried about getting off chemo even though that’s what I want. It’s confusing and scary.

What I have to do right now is trust… trust the doctors know what they are doing, trust that putting the PET scan off a week and delaying the next treatment further isn’t a big deal, trust my own eyes and intuition to know that Trip feels good, trust that the universe is working for us to heal Trip. Trust can be hard for me. It means letting go and reminding myself that control is an illusion. Right now, in this moment, I will trust.

Thursday, May 17, 2012

Finding Strength

Trip has been feeling “great” after getting out of the hospital last week. We got home by 9:00 last Thursday night. We were able to have a wonderful Mother’s Day weekend at home and with friends. His counts were pretty good this week, too. He feels so “normal” that I can help but smile about that and feel good about how strong he is.

Our last day in the hospital, we met another little boy with LCH who is also on methotrexate. He has skin only involvement, which is the best-case scenario for LCH, but has been on chemo for about 5 years. Every time he stops chemo the disease comes back. I know this is the sick reality of this disease, but it still makes me angry. It’s always nice to connect with another family going through the same thing.

Monday, we said goodbye to sweet little Jenson. It was such a beautiful service to remember him. The stories of his cute personality produced laughter through tears. I could not control my emotions through the service and have yet to have a day when the sadness does not surprise me and take over. I recognize part of it as fear, but most of it is feeling pain for friends that had to bury their precious child. I still cannot reconcile the death of a child. It seems so unnecessary. Even though Jenson’s parents are grieving, they unselfishly asked me and Colson to rise during the service while a picture of Trip was on the screen. They were raising awareness of histiocytosis and attaching another family to the pain of this disease. They provided information on how to support histio research. What a positive example of focusing on others through immense grief. I wish I could ease their pain.

I’m trying to focus on the positive. We had a wonderful family dinner last night. Trip was happy and eating great. I found myself praying for more moments like that. It was such a feeling of love for my family. Today, I have been blessed by unexpected, encouraging words from a friend when I most needed them. Colson will celebrate his 40th birthday this weekend. Gaky and Pops are coming to visit this weekend. We got a surprise call today to let us know we will hear from Make a Wish Foundation soon. I explained it to Trip and he said he wants to go to Hawaii! He quickly changed it to Disney World because that’s where is friend Carter wants to go for his wish. There are so many things to be thankful for that can easily be clouded by fear and sadness. Counting my blessings, living in the moment and feeling the love surrounding us give me strength.

Thursday, May 10, 2012

From Expecting to Appreciating

Trip’s follow-up appointment on Tuesday led to him being admitted at Legacy to start chemo a couple of days earlier since he counts were good. This was under the urging of his oncologist and under much protest from his endocrinologist. Things have gone much more smoothly than downtown Children’s. He was accessed in clinic and didn’t even shed a tear! According to Trip, Nurse Jill knows exactly how to do it without hurting him. All I had to do was hold his shirt over his mouth (to avoid spitting on the access site) and Jill did the work. That’s a huge change from the typical four people who have to physically restrain him just to be accessed. It’s obvious we are both much more comfortable being in clinic at Legacy.

After he finishes this round, we wait for scans the week of the 20th to determine the next drug protocol. I’m working on my expectations lesson. It is hard. Honestly, I’m expecting Trip to clear methotrexate and be released from the hospital tonight. I’m expecting his scans to give us good news. I know better than to expect either one. I’m a planner and drive Colson crazy with my need to plan. It makes me feel secure. I don’t like surprises. I know it’s my way of trying to control everything. At this point I know very well I cannot control this disease. I was given great advice last week: change the expectations of tomorrow to appreciations of today. I have consciously worked on that this week when I catch myself projecting what will happen next. It has been a challenge but it has also helped me live in the moment.

Tuesday, Trip’s LCH warrior friend, Jenson, left this world and went to a pain-free place of peace. Although it was expected, the news still ripped out my heart. I was visibly upset and unable to control my emotions while in the hospital with Trip. He asked why I was crying and I told him about Jenson.

Trip stopped what he was doing and asked, “Did he go to heaven?”

I said through tears, “Yes, baby, he is in heaven.”

He looked at me with a huge smile and exclaimed, “That is so cool, Mom! He gets to be in heaven with all the angels! Don’t be sad.”

I explained that I was sad for his mommy and daddy and sister, but I’m so happy for Jenson. That precious little child deserves peace. This disease deserves to be punched in the face.

Tuesday, May 1, 2012

Growth Spurt

The weekend turned into a bigger test of patience for me. I guess my teachers were giving me the opportunity to retake the test I failed on Thursday. Trip didn’t start chemo until 3:00 p.m. on Friday (for various reasons that I don’t have the energy to explain). He had to have a blood transfusion before we could leave on Sunday, so we didn’t get home until 6:30 Sunday night. We were all thankful to be home. He says has mouth sores again, but I can’t see any. I tried to find comfort and peace in that our biggest problem of the weekend was being in the hospital and being consistently delayed. I know some parents that would give anything for that to be their only problem. I feel off-kilter and completely overwhelmed right now. This Daily OM was in my mailbox and makes sense to me right now on some level…


We can also benefit from times of constriction and difficult to help us grow and learn.



It can be very challenging to maintain a positive attitude and a measure of faith when you are in the midst of difficult times. This is partly because we tend to think that if the universe loves us we will experience that love in the form of positive circumstances. However, we are like children, and the universe is our wise mother who knows what our souls need to thrive better than we do. Just as a young child does not benefit from getting everything she wants, we also benefit from times of constriction and difficulty to help us grow and learn. If we keep this in mind, and continue to trust that we are loved even when things are hard, it helps us bear the difficult time with grace.

This period of time in history is full of difficulty for a lot of human beings, and you may feel less alone knowing you are not being singled out. There are extreme energy changes pulsing through the universe at every level and, of course, we are all part of the growing process and the growing pains. It helps if we remember that life is one phase after another and that this difficult time will inevitably give way to something new and different. When we feel overwhelmed we can comfort ourselves with the wise saying: This too shall pass.

At the same time, if you truly feel that nothing is going right for you, it’s never a bad idea to examine your life and see if there are some changes you can make to alleviate some of the difficulty. Gently and compassionately exploring the areas giving you the most trouble may reveal things you are holding onto and need to release: unprocessed emotions, unresolved transitions, or negative ways of looking at yourself or reality. As you take responsibility for the things you can change, you can more easily surrender to the things you can’t, remembering all the while that this phase will, without doubt, give way to another.