Tuesday, August 31, 2010

We are still here

I don't have much energy tonight to write a full post, but I wanted to drop in for a quick update.

The kids are okay. Their schedules are c-r-a-z-y! Band, dance, band, dance, church, band, football game, BREATHE, church...then do it all over again!

Then I decided to go back to school. Now I have my own homework and studying to throw into the mix.

Nick and I will be making the trek to Birmingham on Thursday, Sept 2 for the next checkup. The potential is there for some big decisions to be made concerning chemotherapy. I'm trying not to think too much about it before we actually get there.

I have some other external stressors going on now too. Please pray for me as I try to find my balance with everything.

I received a wonderful gift from a sweet friend yesterday. She found a cross that is specifically designed to hold on to. It's called the Clinging Cross. It fits into my hand perfectly. She thought of me because I sign off with "In His Grip". I love this tangible symbol of strength that I can literally hold on to.

That's it for tonight. I am so tired. I stay tired lately.

I'll catch everything up after Thursday.

Please pray for us.

As always, we remain...

In His Grip!

Sunday, August 22, 2010

Living life and new beginnings

I have realized that I am beginning to LIVE life again. One year ago, I didn't think actively living life, rather than just passing through each day, was even possible. To be completely honest, I didn't think it was possible even 3 months ago.

I am trying to learn how to live this new life that I had thrust upon me 13 1/2 months ago. It has truly taken me the entire past year to be ready to take these first steps to being an active participant in life again. I have grieved harder than I thought was humanly possible. Through this difficult and painful time, I have been able to find some healing. My heart will forever hold a wound that will not fully heal, but I accept that. I wouldn't have that wound if I didn't love Keith and wasn't loved by Keith. I gladly accept my wound as a medal of honor. I am honored that I was chosen to be Keith's wife for 17 years.

For 14 years, I have wanted to continue my college education. For 14 years, I have prayed for God's guidance in this. I gladly put that education on hold to become mom to Nick. Just about the time Nick was diagnosed with liver cancer in 1995, I had been making plans to return to college. I accepted that my plans were not God's plans. My job was to be mom and full time caregiver/advocate to a very sick little boy. Then when Nick was well and making progress in catching up, I began to think about college again. I think I had even requested my transcripts and was in the process of applying for admission. Then I found out that I was pregnant with Kacie. I put college on the back burner. Obviously, I was not following God's will for my life.

I loved being at home with my children. I loved making a home for my husband and family. I still wanted to finish college, but I knew my purpose was to be a stay at home mom. Nick still had health problems frequently. Keith and I wanted Kacie to have the same one on one time with me that Nick had as a toddler. I continued to pray about what God wanted from me, what He wanted me to do. As Kacie grew and began preschool, I also began to look at college once again. Then Keith was diagnosed with cancer in 2003.

Once again, I accepted the task God had for me. During the calmer times of Keith's cancer battle, I would pray about school, think about school, and try to make it happen. It never worked out. Not once.

Then Nick's health problems began in earnest once again, Keith got sicker, Kacie needed me to be strong. It goes on and on and on. I still wanted to go back to college but I no longer knew what I wanted to be. Should I go into the medical field? I know so much. It would be a waste if I didn't...right?! Should I continue my original dream of being a teacher? I don't know. What if I don't like it?! Will there even be any jobs with all of the cutbacks?

Questions, questions and more questions. Then Keith died. Even in the first days and weeks after Keith's death, I knew I would eventually need to make a decision about a career and college. I still didn't know what God wanted for me though.

After much counseling with friends, family, and my MLCs, I decided to change what I was praying for. Instead of just praying for God's guidance, I began to pray for clear and concise direction. I prayed and confessed that I really wanted to have a degree/career that made a difference. I prayed and confessed that I wanted to do what God wanted me to do...not what I wanted. I finally gave over all of my confusion and wants to God. I finally allowed Him the room to show me what HE wants from me...not what I want from Him.

God, in His amazing and Almighty ways, answered my prayers. I not only know what I want to do, but I KNOW what God wants me to do. Guess what?! They match! Imagine that! I have since found out that He also answered many prayers about my return to college. When I found out who all has been praying for me specifically and without my knowledge, I felt honored and loved, and a little ganged up on. I feel like folks have ganged up on me in prayer. That is so not a bad thing!

I am officially back in college. I will have my first class on Tuesday. I am excited and scared. I am worried and confident. I am relieved to be back, yet wondering if I have lost my mind. It's safe to say that I have some mixed feelings about finally being able to do what I have wanted to do for 14 years.

Not much has changed in my daily life. I am still a widow trying to raise two kids, a full time caregiver/advocate to a child with cancer, trying to be both mom and dad sometimes. I still have times when I am grieving. I still miss my husband and best friend. It probably isn't the best time for me to go back to college, but I have learned that there will always be a reason not to go back.

There are many other signs of active living going on around my house. I am a little overwhelmed by the amount of changes that are happening, but I also know that it is time.

As always though, I am remaining...

In His Grip!

Thursday, August 12, 2010

One week later

It's been one week since the kids and I received the news about Nick's cancer. I haven't written anything since my last post...not even in my personal journal. Honestly, I just simply have not wanted to even think about what happened and everything that was said. I just wanted to live without the burden for just a little while.

The burden has always been there. It's always in the back of my mind. I was shelving again. I know that is a coping skill that I am not supposed to use. MLC (My Lovely Counselor just in case there is a new reader) told me just last Friday in a time like this shelving until I can DEAL with the emotional/mental weight of the burden is okay. It's the long term, packed into boxes, duct taped shut shelving that I am not supposed to use to cope.

I found myself crying on my way back home from school drop off yesterday morning. I felt like I was back in the same place I was in every day last school year: missing Keith with an intensity that is felt physically. I eventually figured out that the emotional overload happened yesterday because I have been extremely busy Monday and Tuesday. Yesterday was simply the first day I had since school started, since Thursday's Birmingham visit, since the 13 month mark that I had slowed down long enough for any kind of emotion to surface.

It certainly surfaced yesterday. I found my way through it. I attended an extra grief group session to help me over the hump. I occupied my my mind. I used the tools I have learned during the past year to handle days such as yesterday. I thought it was over. I was wrong.

It came back today, except it brought along the reality of Nick's diagnosis. This afternoon I felt like I had slid downhill backwards on my butt. In case you've never had that happen, it's not fun. It is very painful. I think I found every rock, every stick, every tree root and pine cone on my way down.

The reality of Nick's diagnosis and impending treatment is overwhelming. I am trying not to focus on the what ifs. The problem is that I know too much about every aspect of each plan that the oncologist is considering for the treatment of this cancer. We have already been there, done that with each and every treatment option.

I wish I could just forget and not think about all this right now. It is truly overwhelming to even consider any part of this right now. I simply do not want Nick to have to go through this again. I find myself going back to the past questioning of the purpose of putting this child (who just happens to be turning 16 in a couple of weeks) through this fight for his life...AGAIN!

I have to stop now. I'm beginning to go there again. I am just so tired of cancer being my family's life. I don't have anything uplifting to say in this post. I'm frustrated and tired. I am sad and mad. I am grieving and still functioning.

I am trying to remain in His Grip, because I simply don't know where else to be.

Thursday, August 5, 2010

Update on Nick 8/5/10

I don't know how to begin. So I guess I will just jump in.

The thing I dreaded has happened. Nick is NOT in remission. When I met with the oncologist this afternoon, he told me that since our phone conversation on Monday evening things had changed. Sometime since Monday, the pathologist was reviewing all of Nick's previous pathology reports, especially the one from the biopsies used to initially diagnose the PTLD/lymphoma 4 years ago. During the review, the pathologist discovered two very specific tests that had not been run on the biopsy this time that were done in the past.

I am going to try to keep from getting too technical, so bear with me.

One of the tests specifically looks for Reed-Sternberg cells. If these cells are present, then a diagnosis of Hodgkin's lymphoma is usually made. The pathology done four years ago showed that these cells were present. Post Transplant Lymphoproliferative Disease (PTLD) sometimes looks very similar to Hodgkin's lymphoma. Along with these Reed-Sternberg cells being present, the cells also contained the Epstein Barr Virus (EBV). That is where Nick's initial diagnosis of EBV driven "Hodgkin's like" PTLD/lymphoma came from.

When the pathologist ran this test again on the new biopsy, the Reed-Sternberg cells were found once again. These are also the only cells that contained EBV as well. This means that Nick still has EBV driven "Hodgkin's like" PTLD/lymphoma. This is the reason for Nick's immune system dysfunction. The PTLD seems to be attacking Nick's immune system.

The oncologist was very clear that this result does not mean that things are worse. He said this only confirms what he was already thinking. This comes as no surprise to him. The surprise was the absence of the cells in the initial pathology report from Monday.

On my side of things though, it feels like the world has tipped again. The kids and I really enjoyed living in the land of remission, if only for a few days. The three of us are trying to handle this set back. Nick is dealing with some sadness and confusion. Kacie is sad and afraid. I'm feeling deflated.

The treatment plan is undecided at this time. The oncologist wants to take some time to do some research on different treatment plans. From what we discussed today, the chemotherapy treatments range from mild (like what Nick had 4 years ago) to very aggressive (like what Nick had when he was a baby). The benefit will have to out way the risk in whatever treatment the oncologist comes up with. He also said that he may decide not to do anything and keep going the way we have been...watching and waiting.

Nick tolerated the large dose of IVIG very well today. His IGG level was very low once again today, and that's only three weeks after his last dose. Hopefully, today's mega dose will give Nick better coverage. The oncologist will check Nick's IGG level before the next dose is given to see how effective today was.

There is so much more that I could go into, but I'm not right now. My mind is just swimming with information and I am overwhelmed with different emotions.

Thank you for the thoughts and prayers today.

I just don't know what else to say. Please don't be discouraged and lose faith that Nick can be healed. I am trying hard to keep from falling into that same place. I do believe that Nick will be healed and I will keep praying to that end.

Right now, the kids and I are focusing on remaining...

In His Grip!

Watching and waiting

I'm writing this post from the infusion room of the Hematology/Oncology clinic at Children's Hospital. I have spent countless hours over the years in this clinic...watching and waiting.

As I sit here today, I see the mom and dad of a little girl sitting across the room from us. I don't know why the little girl is here. I don't know anything about this family other than what I see. The mom is hugely pregnant. The dad is holding the little girl (who looks to be about three) in his lap. What strikes me about this family, other than the fact that I think they are newbies to this world, is the fear that clouds the dad's face that he can't quite mask. The mom is trying so hard to remain calm. She is sitting in the same position as I, to the left of your child in a chair that is slightly behind the child's chair. Mom is crying, trying not to let her little girl see her cry. Dad looks to be deep in thought as holds his little girl. The child is distracted by the TV. Mom had to leave the room. She came back calmer than when she left.

It brings back so many memories of watching and waiting when Nick was young. Watching Keith's face as he held Nick in his lap, not fully able to mask the fear. Remembering myself as I struggled to keep my emotions under some sort of control. I didn't want my child to be more scared than he already was.

Even now, I am struggling not to cry as I watch this family waiting. It's difficult for me to sit here and not say anything to them. Why don't I? Because right now, it wouldn't help. They have insulated themselves from what is going on outside of their own crisis. It's easy to see once you've been there. I've been there so many times. It didn't matter if someone tried to make conversation with me, tell me they would pray for us, offer us some kind of hope that we would survive whatever catastrophe that was about to happen. Nothing anyone said to me during these beginning moments mattered. We were too numb. We were too much in shock. We could only focus on getting through this moment.

I can all but feel the sadness emanating off of them. There is strength there too though. The nurse has come to take their daughter for the tests that will give them the answers. Dad carries his little girl. Mom follows behind. They are taking the walk that has the power to change their lives forever.

As I watch and I wait, all I can do is pray.


Monday, August 2, 2010

Update on Nick 8/2/10

Nick's oncologist called this evening with the pathology results from the biopsies.

I have mentioned before that the pathologist would be testing for several different things.

The tests for any kind of fungal infection and micro bacterial infection were NEGATIVE. Praise God!

This was a very real concern for us. It is not uncommon for transplant patients to become exposed to some kind of fungus or micro bacteria that would cause problems similar to Nick's. People with normal immune systems are able to fight of these invaders without any ill effects.

There were also tests run that determined the structure of Nick's lymph system. These tests showed that the lymph structure is NORMAL. Praise God!

Another test showed that the EBV (Epstein Barr Virus) is still present in some of the cells that make up blood cells. The amount of the EBV present is not much more than what is likely present in anyone that has had previous exposure. Another praise. We are always watching the EBV levels. The PTLD/lymphoma that Nick was diagnosed with began from an EBV exposure. The levels help the doctor know exactly how active the EBV is in Nick's body.

The doctor said that overall the pathology is not impressive.

The tests also showed that the lymph tissue samples taken did not indicate classical EBV driven PTLD lymphoma. This is another praise. When the oncologist and the pathologist compared the current results to the pathology results from 4 years ago, they determined that it is completely different this time. These results indicate that we are dealing with a chronic EBV infection that often knocks out the B cell portion of the white blood cells and is sometimes associated with giant lymph nodes (such as the ones in the pelvic region where Nick's mass is at).

Now for the best news of all.

Nick's oncologist said that he believes that the PTLD/lymphoma is in REMISSION!!!!!!!! Hallelujah! Praise God!

Nick is cancer free! I can barely grasp the reality of this news. This is the first time in 6 1/2 years that no one in our house has had cancer. No chemo.

Ok...(trying to remember to breathe)...Nick's diagnosis is EBV driven immunodeficiency. It is likely caused by a chronic EBV infection constantly attacking Nick's B cells. The best course of action right now will be to continue to treat Nick with the IVIG. The oncologist is doubling the dose of IVIG that Nick will be receiving in the hopes that it will fully replace what Nick is missing and give him more immune protection longer. The usual dose of IVIG is about 300 mg. Last month, Nick received 350 mg. A bit of an increase, but not a lot.

On Thursday, Nick will likely be receiving around 800 mg of IVIG. This will basically replace all of the immune globulin in Nick's body. It sounds aggressive. It is aggressive. It is not something that the doctor is approaching lightly. Anytime IVIG is given, the patient is at risk for an allergic reaction. This risk increases with the increase in the dosage. I will confess that this worries me. I know it is what is best for Nick, but the allergic reaction is frightening. The nurses are prepared for it. The one time Nick had a reaction it was very mild and was gotten under control quickly. This time I'm worried.

Please pray for us on Thursday. Pray that Nick's body will handle this treatment without any ill effects or allergic reactions. Pray that I can handle the stress of just watching and waiting for several hours.

Thank you all for the thoughts and prayers. It is so wonderful to be able to write an update with such wonderful news and praises.

I will update again sometime Thursday or Friday. I will also update on Facebook throughout the day.

We continue to work to remain...

In His Grip,

Sunday, August 1, 2010

Yet another post...

You aren't imagining things. This is another new post on the heels of an earlier post.

I want to share just a few thoughts I've had as the day has progressed.

I took the kids to see the new Karate Kid movie this afternoon. I was absolutely in love with the original Karate Kid (aka Ralph Macchio) during it's first go round. I did not mind seeing this version. I looked forward to seeing an updated version of the movie.

I was not counting on the amount of grief that is in the movie. The boy's dad has died prior to the beginning of the movie. The sensei lost his wife and child in a tragic accident prior to the beginning of the movie as well. This all comes to light in a powerful display of raw grief in the movie. The sensei is smashing his newly rebuilt car to bits with a sledge hammer on the anniversary date of their deaths.

Okay...here is a moment of complete and total transparency. I completely understand why he was bashing the car to bits with the sledge hammer. I have felt emotions that were that intense. I have felt that grief would completely consume me in the way that it was consuming the sensei. There have been times that I have wanted to destroy something. The one time I let the rage out it was in a non harmful way that consisted of tearing up a lot of magazines. I made a HUGE mess. MLC was very impressed with the mess I made and the constructive way I found to release the anger that had erupted.

During that scene after the sensei has shared the story of the death of his wife and son, the boy gets out of the battered car, goes and gets these training poles that have loops of rope on one end. He comes over to his teacher, loops the ropes around each of the teacher's hands, and begins to tug on the teacher urging him to get out of the car. At that point, the boy is using the poles to help his teacher move. The teacher is mimicking the boy's movements as long as he is holding onto the loops of rope on each pole.

It struck me with such intensity that when someone is walking through grief, whether it be as recent as yesterday or as long ago as 30 years, he/she needs someone to urge them to grab hold of the loops of rope and let someone show them how to move again. The reason being that someone who is deeply grieving may not remember how to move.

I am so thankful that I had several someones who were able to urge me to take hold of the loops and show me how to move again. In the early days, I had to remember to breathe. I could not have gotten through it without these special someones. They took care of me, my kids, my house. They made sure I ate, even when I didn't want to. They got me out of the house. They did not allow the grief to consume me when I was too weak to fight it. They encouraged me and kept me grounded. They loved me and let me cry.

When I was so enamoured with the original Karate Kid 20+ years ago, I did not realize the lessons that were in this movie. I have spent some time this evening comparing the first movie to the new one. I did not remember this intense grief being in the first movie. I went back and read a synopsis of the original movie and it was all there. Other than the obvious factor of maturity, I realize that losing the love of my life has made me more sensitive to others who have lost a loved one.

Grief is everywhere around me. It's in the newest book released by one of my favorite authors. I've had to stop reading the book for just a little while because the grief is too intense. I find that I am being confronted by grief almost daily in some way. It isn't so much my own grief that is confronting me now, as it is external grief. It just pops up out of no where, and I have to handle whatever emotion comes as a result of the confrontation.

And I thought the second year would be a little easier to handle...

It's now August as I am posting this. My baby boy turns 16 in 25 days from now. My sweet husband has been gone for 13 months in less than a week. In another month, we will acknowledge Nick's 14th transplant day. I will remember the mom whose amazing love for her dying son allowed my son to live.

I wonder if she had someone who helped her learn to move again.