In Sickness and in Health

Hello from St. Jude’s,

We shared the news with you on Thursday early morning or late Wednesday night that Catie’s results were in and were as good as we could have hoped for considering Catie has brain cancer. When Catie, M.E. and I woke the next morning it looked like another day of baseline testing; blood donor information – to prepare us for her own blood donation for use later during her treatment, pulmonary function, audiology, CNS – meet with the clinical nurse specialist to “teach” me how to give a sub-cutaneous injection to Catie, psych testing and then a functional MRI – brain scan done while Catie is actively answering questions regarding visual stimuli. Back at Target House we had already pitched the idea about Catie counting her calories and gave her a special notebook to track her progress, promising that when she reaches 1400 we will go paint pottery together. Sounds just like another routine day at St. Jude’s. It wasn’t.

Oh Lord, do you remember who I am? I am going to learn how to give my child an injection? Like she is going to let me do this? Like I am going to be able to do this? Where are the trained medical professionals? Why am I doing this? Catie offered this explanation, “Mom, it is going to hurt no matter who gives me the shot, right? I’d rather you do it at home because than I don’t have to go the to hospital and wait.” So there you have it. I always accuse Kevin of enjoying life in the middle of the envelope and then I drag him to my edge. Well giving an injection is probably as close as I come to an uncomfortable edge – where is the middle?

I am beginning – I tend to be a slow learner – to realize that having a child with brain cancer is all about the living on the edge. Now what you do with that information and how you live with it can make all the difference, not only in your life but in the lives of others around you. Most importantly, it can in my case make all the difference to Catie. So I “learned” how to give Catie an injection. It is not nearly as bad, nor does it take as long as flushing her lines and changing her bandage. I am working with Catie’s thigh, it is pretty little but thankfully there is still a little muscle left. She takes a long time to mentally prepare herself as I stand there patiently with a loaded needle. Thankfully, Kevin offered me an old Carol Burnett scene to keep me laughing while I wait. (Do you remember the one when Tim Conway plays the dentist and injects the Novocaine into his leg numbing it to the point that he can’t stand on it?) Catie doesn’t appreciate or see any humor in the situation. She waves her hands back and forth and tells me to wait. M.E. observes from the safety of her pack n’ play. That was Saturday, I am getting ahead of myself.

Thursday ended with me dragging M.E. to pick up Catie’s Friday schedule. It was a formality as I knew there were only two appointments. One to give the actual injection and two an Echo/EKG. When I looked at the schedule there were 6 appointments. M.E. was with us. I had cleared this with the nurses on Tuesday – Friday’s schedule was empty. That is why we/I decided to let M.E. stay. I looked at the nurses and said “no” you have to clear this schedule. If you have things on here for Catie only fine, but if there are appointments that you are going to need my attention I can’t give it to you, not with this baby here. I took the printed schedule and crossed out all but the two original appointments that I had known about and left.

Thursday night Catie wanted to go the a dinner at Target House hosted by Target Corporation. She really enjoys those dinners – but not the food. We made a deal that if she ate we would go. As I walked in the door we were greeted by Joe (from Target) who offered to carry plates for us. We (M.E., Catie and I) sat down and so did Joe. Joe cut M.E.’s chicken and visited with us and heard all about Catie’s cancer and trip home and commercial. Catie was back. It was wonderful. She was engaging in conversation and visiting with old friends and I was thrilled. Then she told me that her hot dog didn’t taste good. I offered her M.E.’s chicken. That didn’t taste good. I offered her a bite of my hamburger. She refused. They had vanilla cupcakes with no icing – her favorite. They didn’t taste good. She ate 6 skittles and drank water. I let the not eating go because she was having fun. Talking and playing and we met Jeff and Malcolm (also from Target). We all were enjoying ourselves. She even wanted to play on the playground. I was overjoyed!!

Thursday night I climbed into bed filled with joy and excitement. Her first day of counting her calories and even though she skipped dinner she ate 1303 for the day. (I gave her 50 calories for the bite of hot dog and cupcake.) Friday, the girls could sleep in and play on the playground again in the morning. We didn’t have to be at the hospital until 11:30. I prayed prayers of Thanksgiving and drifted off to sleep. M.E. woke me at 8:30. Friday began. Catie didn’t want to get up – but she did. She didn’t want to eat but she did. We talked about dinner and her not eating. We agreed that she could go to every hosted dinner but only if she ate before she went. She agreed. We got ready and went out to the playground. Catie and M.E. played. Catie rode the little bike that she rides at Target House and M.E. played Cinderella’ trying out every bike they have. I sat in the beautiful morning smiling and thrilled that my daughter was back and caught up on my e-mails. Life was going great and Kevin was arriving in 12 hours. I was a happy woman.

Less than two minutes later Catie is throwing up all over the playground. She is throwing up on herself and M.E. is standing there shell shocked. I picked up that laptop and M.E. in one arm and ushered Catie inside and upstairs. We cleaned her up and cleaned up M.E. and Catie took her medicine. I sat down for a minute. What just happened? “Catie, were you feeling sick? Didn’t you know what was going to happen?” No response. She was gone. She was lying down under a blanket with her eyes closed. She had about one hour to rest and then we would have to head to the hospital for her injection. (This injection, GcSF, needs to be given to Catie each day for five consecutive days prior to her stem cell harvest – which is scheduled this Tuesday.) Off to the hospital we went and there we sat and waited for an hour and a half. Once we were seen we were done in less than 15 minutes – so I have to agree with Catie. If I can give her the injection it does save time.

The girls ate lunch and M.E. napped. Catie sat down and did 15 pages of math. She was happy and chatted and enjoyed herself. What happened earlier? Once M.E. got up, it was back to the hospital for the Echo/EKG. Catie sat down and was delightful. She chatted. She was interested in what is going on, she was asking questions and was watching everything. I was again thrilled. When the test ended I asked her where she wanted to go and what she wanted to do. I told her it was 4:30 and that we were free until we picked Kevin up at 9pm. She said that she wanted to go out to eat. So out we went. She ordered her dinner. It came right away. She ate half of her plate of pasta and could eat no more. Her grilled chicken didn’t taste good Catie stopped eating and stopped talking and just colored a picture. M.E. was eating her dinner and loving it. I tried to eat but how could I when there sitting across from me is someone who was miserable. I finished and so did M.E. and we got back in the car. She said that she felt fine. As we were driving she got sick and then sicker. I handed her a ziploc bag and she did her best.

I told her we needed to stop at a store and get something to clean to car. We did. The car is fine. We went home and got into pjs and went to pick up Kevin. We were all thrilled to see him, but the damage was done. I told Kevin about the day. I described it as a nightmare, with glimpses of joy. I wanted all joy and no nightmare and that was and is not fair to Catie. She is a sick little kid and what she needs is someone to understand and help her get back to being herself not someone who only wants delightful Catie around. If I had to live under that kind of pressure I’d stay in bed all day too. So Friday calorie count was 0 – how do you count calories when you get sick after breakfast and dinner?

Saturday, we all got up. Catie again lacked all energy and excitement. She was just going along for the ride. We went out to get some supplies for the apartment. She was with us but not talking and smiling. When we went back she ate but you could tell she didn’t want to eat. She took a nap with M.E. and slept for 3 1/2 hours, in fact we had to wake her. She wanted to go out again. So out we went to another of her favorite restaurants and even saw Herschel, a favorite waiter. She barely spoke with him. She didn’t eat. She asked to go home. Back home we went and back to bed went Catie. Her calorie total for the day is 1153. Sunday morning again we woke her. Even M.E.. tried to get Catie up and smiling. We went to Mass and she rode her bike but she wasn’t happy. She took another nap and again we had to wake her. This time however as she laid in bed she began to laugh and smile. Kevin was putting his ice cold hands on me and I was screaming and jumping around the room. Soon after that we got in the car to take Kevin and M.E. to the airport and she seemed to turn the corner.

She laughed and spoke above a whisper. She hugged Kevin and M.E. good-bye. She didn’t cry. I sobbed like a baby. I was so sad to say good-bye to my love on this our 12th anniversary. This morning I awoke in his arms and was thrilled and delighted to just be with him. We even spent time discussing Catie and what could possibly be the matter. Kevin was so concerned that he sent off an e-mail to Catie’s doctor looking for – hoping for answers. Now he was leaving and I was crying. This was a short lived moment as M.E. was running all over and Kevin only had one free hand. We left them and Catie asked if we could go to Huey’s (where you shoot the toothpicks into the ceiling) for dinner. I told her it is Sunday and they have live music which would be too loud. We stopped anyway and she agreed that the music was too loud. She handled that pretty well and we went home for dinner. She immediately sat down and figured out how many calories she had eaten today. Are you ready? Today’s calorie count was 1547. I was thrilled for her. We called Kevin at the airport and M.E. sang Catie the “I am so proud of you” song.

What will tomorrow be like? I have no idea. Will Catie eat? I will offer her food. Will Catie smile and chat with people? I pray that she will. I can only encourage Catie. I can only offer Catie an example of behavior and that is my own. I can be positive and uplifting and hopeful. We all have good days and bad days. Very few of us are watched as everything goes into our months – this usually stops once we can feed ourselves. Very few of us have a mother that has devoted all her energies to the well being of one child while five others are in the care of others. Catie is living under a microscope – so that we don’t miss anything. What Catie may need is to just be allowed to live and to be loved and supported however her living each day works for her. Please pray for all of us that I don’t take this time of rest away from Catie. Please pray that she is just tired as we await her doctor’s response.

God always knows what is going on in our lives whether we include Him or not. Well here is the lesson in all of this for me today. Today, twelve years ago, I took a vow. I promised to be good to Kevin in good times and in bad, in sickness and in health, for richer or for poorer until death do us part. Today I am reminded of my vows not because Kevin and I renewed them but because we need to consider them as we continue fighting for Catie’s health. This is a struggle for Catie first of all. Then it is a struggle for our marriage and our family. We all need God and prayer and you all to support us. Many of us have taken these vows. Many of us have broken these vows. God is always there to forgive and keep loving us. I need to do the same for Catie. I need to forgive myself for getting impatient with her and I need to keep loving her in her sickness and praying for her health.

We will let you know what we paint at the pottery place. I guess we will be going tomorrow if Catie is up for it.

Good night and God Bless.

Peace be with you all,

Christine and Catie

Kevin, Maggie, Max, Mia, Molly and M.E.

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