Friday, February 26, 2010

So many things

Hi All,
So, I must apologize for not blogging for a while. My hands have been working against me & painful. It is also hard to motivate myself to do much.
Today, I have duct tape surrounding almost every finger... so it is making it possible to type, yet also very difficult to type. Why do I have duct tape around my fingers? Well, I used to do this all the time years ago... but just got fed up with it... frustration has led me to it again.
So, let me just give a brief run through. I have been going back and forth to NIH every 2 weeks, sometimes 3. Been joggling over half a dozen oral meds alone. Different antibiotics, antivirals, antifungal, anti inflammatory, painkiller & steroid. Since a little before Christmas I have been treating my lungs for two things- pneumonia and Histoplasmosis. How long, months most likely, had I been going without a diagnosis, so therefore no treatment? I don't know. They try not to radiate Karly & me too much... so we try to span out when we do certain scans.
The meds I've been taking have been improving my lung health... to a certain extent. But the Histo takes months to treat & the meds for it have been making my liver function tests go a little wacko. Also since before Christmas I had been taking my study drug- which also seems to make my liver unhappy. Now, being on one & not both seems to keep the numbers we want in a good range. But being on both has the effect of high levels & then they don't come down. Becuz of this, the study drug takes the back burner (docs using caution). I have been on/off my study drug & getting blood drawn 2x or more weekly to see when the levels came down enough so I could get back on it. So after doing this for several months the docs worry about long term liver damage... Long story short- I'm off my study drug :'(
I feel like I got my hopes up... thought I might actually get my hands back from this virus that torments them (sooner/pre-transplant).. and possibly see a budge in the other virus that I'm losing so horribly to all over my body. I am SO DISAPPOINTED... no, that is an understatement!
I do understand the caution...-> I ABSOLUTELY need all my organs in best shape as possible for my stem cell transplant(whenever there's a match)... none of the IFs... like we were worrying about with the liver becuz of the up/down levels. But everyday I fight moods & really have about had it w/ this body... more becuz I just want to see improvement.. an increment of improvement...something! AND the study drug had shown that... a tiny light... even if it was barely noticeable to anyone else, I FELT it & not just physically. Now that increment is gone & the monotonous, painful growth of both viruses rage on... nothing stopping them... ... ... I don't know what else to say, to express...
ALL I can do is get up in the morning & pray Gods grace, Gods strength, peace will get me through the day. goes back to simple Phil 4:13...... not my strength- Gods strength, then I can get thru the day.
Also another thing I found out while the few days at NIH was I have another resistant bacteria again! The docs are now looking & I'm waiting on sensitivity results. This should help figure out another med that will be successful in treatment... since obviously the half dozen plus meds I take now just aren't cutting it.
Anywho, to lighten the outlook... Karly is improved every time I go back to NIH :) She is very skinny, but she is off IV meds... This is a new & great freedom... being hooked up to machines all the time downright sucks... If youve never had the experience praise God! Her mood improves with each new milestone she hits & surpasses, I am so proud of her, she has come a long way! I expect great results on her upcoming bone biopsy, i just know it :) She gets another wonderful freedom this weekend as you all know... Mom &Karly are getting off campus(out of the hospital)... & staying the weekend with family in MD! I pray that first & foremost it is a relief, it is fun... but I also pray they find a balance & do not tire Karly out too much. It won't be much longer till the family gets to see each other again... for our spring breaks we will be traveling to MD- Tyler on his, and then everyone else on dad's! We are looking forward to this immensely. As my dad mentioned in his blog... gotta keep pruning the shrub, gotta scrub the lighthouse, uh, gotta clean the fish tank... no that's not it... haha... well we just need to see each other, be the family unit, support each other & that's all there is to it! Thank you all for the vast support web you have surrounded us with; keep up all the prayers! Still pray diligently for the donor match, never stop spreading the word! I love you, my family loves you, and God bless!
Kelsey <3>

Monday, February 22, 2010

being apart

I really am concerned with the separation of this whole thing. When you get caught up in the details of functioning in life, or the processes of working the system to gain whatever benefit you can get from it or just allowing the distance and silence of that distance but relax on the intimacies of life together because of distance, because of convenience, or because you forget the importance of that, then you really have lost something.
The struggle of being apart is just that. It is a constant dimming of the lights that illuminate relationship. In the old days of light-housing, the lighthouse keeper would have to do constant rituals of trimming the wick and polishing the glass to maintain the intensity of the light. After all, it was that light that keeps the harbor safe from tragedy. It kept the boats off the rocks.
I think we see this distance in homes all over America through their jobs, their personal activities, in their struggle to be independent of one another. It has just taken me this distance to step back and see it for what it is. It smudging of the lens, the carbonizing of the wick. The challenge is to be purposeful in your pursuit of the intimacy in the relationship. Being purposeful to share the details of the struggle, the fears, the positives. This is a good lesson for all I do believe.


Sunday, February 21, 2010

I am thankful that the weeks pass quickly. She finished Cycle 5 on Tuesday. They did an MRI of her brain wanting to see one of the nerves that was affected by the lymphoma. The nerve looks OK but she still sees double and cannot close it by itself. Since they don't know the extent of the damage that was done, they don't know when or if these functions will return. They also made note that her white matter is spongy, but told me not to worry about it...OK. Her sinuses were worse, so she started another antibiotic. She is currently taking all her medications by mouth, so she can be more mobile. This is making her fuller and less like wanting to eat. She is still not gaining weight. She has been more tired after this round, however we took a brief field trip from NIH to the movies last Thursday. We saw "When in Rome". She laughed and enjoyed our time away. We are looking toward getting a pass for the weekend to my sister's if all is well by Friday, and she is not neutropenic with fever. Her muscles are weak and aching. She received a massage on Friday which she loves!

Kelsey is coming for her regularly scheduled appointments on Sunday through Tuesday. We look forward to her visits. Kelsey and Karly have a special bond. Someone we have a special relationship with has offered to take Kelsey and I to her hair salon for haircuts on Tuesday. I am SO looking forward to this. My hair hasn't seen any attention since October. Hey, girls...the swoop is getting better.

We have had a great week of temps and sunshine. Much of the snow has melted. It is like a receding hairline along the sidewalks. I open the blinds everyday in her room(as the docs ordered) for which I'm thankful. Sunshine does a body good. Some days, she really just doesn't like the light, but we compromise to half blind.

She is so much better than when I brought her here which is encouraging. We have seen many kids come and go...some have been here as long as us. I debated sharing this...but wanted you to know some of what I deal with as a mom. In January, I was in the family room where two moms were sharing an adult meal, and we started sharing our situations. We mostly shared how our faith is what keeps us strong. It is what we trust in and it is what we live in. It is where we start and end our days. The daughter of one of the mom's was in ICU at that point, and she had just returned back to NIH after delivering a baby. How hard it must be to leave an infant and watch another child struggle to live. Her daughter in ICU died three days ago. It has made me sad, and it makes me afraid. That is when I must remember to choose to put my energy and thoughts in His presence. Whenever I start to feel afraid, He is my strength and shield. Not only must I entrust myself to His care, but the lives of the girls. Psalm 56:3, "When I am afraid, I will trust in you." Thank you always for praying and caring for us.


Sunday, February 14, 2010

Happy Valentine's Day

Today hasn't started out very good for Karly. It is one of those days when something is out of whack and you just can't pinpoint it. I gave her a new T-shirt and socks to help brighten her day...I think it helped.

The picture to the right was on one of her Physical Therapy days last week. It was funny when I had asked her what she had done that day and she replied, "I used 1 pound weights. Now, I'm getting buff!" I love it when she can use her humor. She is such a funny and witty girl.

I am back in my former comfortable room AND was able to go to the mall! I usually don't like malls, so it is sad when this is my fun for the day. Never-the-less it really was good to get out. Tracy, Konner, Kassidy, and my mom went to my nephew, Regan's, Eagle Scout Court of Honor in Lafayette yesterday. I was so happy that they went and supported this great achievement. I heard it was awesome!

Kelsey has been able to take her study drug. However, we haven't seen any improvement. It took about a month last time. I suppose with the break, it will take awhile for it to catch back up in her system. She returns to NIH next week to check her lungs, skin, and liver.

Mom sends me daily devotionals. Here is the part that I try to focus on: "Give yourself fully to the adventure of today. Do not give in to worry or fear, those robbers of abundant living. Trust me enough to face problems as they come, rather than trying to anticipate them. Fix your eyes on Me, the Author and perfecter of your faith, and many difficulties on the road ahead will vanish before you reach them." Those worries and fears do come in many forms, either by the innocent mention of someone else's story or comments by the doctors, but it is what I do with them that matters. Thank you for praying because it is felt by our family.


Friday, February 12, 2010

Today started out with the scheduled bone biopsy. We went to procedures but the anesthesiologist wasn't comfortable with giving the needed sedation. He sent us to the OR. After we arrived there, that anesthesiologist wasn't comfortable either. She has this goopey cough which is normal for her but puts her at a higher risk. During the Ommaya surgery they had to tube her. Nobody wanted to take on the risk right now. The hope is that she will improve in the next three weeks. Karly always sounds like this during the winter months, so I don't expect much of a change until Spring. The docs are putting her on a regularly scheduled nebulizer which should help. The Cancer Team needs to know what the bone marrow is looking like. This will help them in making a determination as to when she will stop systemic chemo. I don't know what will happen, but it will all work out.

Yes, we did get 4 feet of snow. The left photo is the steps I travel everyday leading up to the front of the hospital. The right photo is the path leading back to the Children's Inn. The hospital was finally officially opened today. I was able to move to my original room. Just in time to sleep in on the weekend. YEAH! I spent the last three days working on taxes for myself, my son, and several financial aid forms required by his college. I finally submitted all three tonight.

Today was the Valentine's Party which was postponed until today. Unfortunately, Karly wasn't able to go because of her chemo. However, I brought her the crafts and sweets. I expect the weekend to be uneventful. This is a good thing when we talk about health...boring is good.

I hadn't posted Trent's bald head from a couple weeks ago, so here they are. Speaking of hair...we Skyped Tyler yesterday and he called Karly- Einstein because of her hair. She responded with, "He's a genius!" She has been feeling so much better the last three weeks. Praise God! As always, our trust is in Him. He equips us with whatever we need everyday.


Sunday, February 7, 2010

As Time Flys By

Karly commented to me on Friday, February 5 that it had been 3 months. It really is going fast. She starts Cycle 5 on Friday, Feb.12. She has a bone biopsy on the 12th also. This will give us some more insight in how well the treatment is going. She graduated to the once a month head chemo which treats the Central Nervous System. This treatment goes until around May 20. The teams have started the preliminary talks toward her stem cell transplant. The goal is to move directly into the transplant after the lymphoma is gone. I know this extends my stay here but hopefully we will have time between Cycle 6 and the transplant to come home. As always, we will do whatever is best for Karly. It would be cool if both girls could transplant at the same time.

I've had a rough week. The Inn moved my wing of guests to other rooms. I am in an uncomfortable room with a space heater, right next to the big screen entertainment center, the exit to our rooms, and the parking lot. I shivered again last night until 1:30am, listened to the snow plow until about then, and the door slamming that late also. I keep telling myself it could be worse. This situation has caused me to want to breakdown and cry, but I haven't because it is not worth it. This situation is beyond my human understanding that I cannot explain or fix. I have pleaded with the manager, expressed my needs, and have to leave it at that. There is only one way out...through the wisdom of my Heavenly send the Spirit of show me how to walk wisely through these days. Only this wisdom will make a way for me. As His wisdom is revealed, Lord help me to be faithful to all that you show me to do. Continue to help me trust you and to remember that the wisdom of this world is foolishness to you. Help me to know the difference between human advice and Godly advice and to always choose Your way.


Friday, February 5, 2010

Another Friday

Well, another Friday has come. Yes another Friday! The kids are entering some new classes, which forces me to evaluate their work load. But all in all school is getting done in semi-sufficient form and the wheels on the bus do go round and round. For a while there we had a flat tire or two.
I wanted to mention for those Survivor fans about the preview show which for whatever reason, ( I'm sure God knows ) I got to watch a portion of it. My TV viewing is sporadic at best these days, but I just happened to catch a section of the show. On it, they showed ex survivor contestant Ethan, who is currently fighting a rarer form of Lymphoma. They did a whole segment on his trials with Jenna and how they were survivors in real life. And this was the cool thing, he has recently had a stem cell transplant and is now doing fairly well. Now I hadn't even thought to turn on the TV and certainly didn't even know that Survivor was even having a preview show. But I just so happened, (thank you Lord), to be in the room and there it was. I give glory to my Lord and Savior for presenting this encouragement to me in the context of my everyday life. Being Survivor fans, I'm sure this will soon be our testimony as well!!!!!
The long hall is grueling, the view of the road is fog covered at best, the victories are small and sporadic. In survivor terms, we haven't won many reward challenges and have set at the fire for tribal counsel a lot. But Jeff hasn't snuffed our torch!
The Lord uses a reality show to bring His reality to bare. He is the hope of the Nations throughout generations, a person so personal He even subtracted as Karly's hair fell out. Yes, we LOVE THE LORD!!! He is our strength, our hope and our provider of peace. And we are His survivor finalists!


We get to play the game with much nicer, kinder, wonderful contestants!