Updates on Jack
Rob, Jack and I went to Dallas yesterday to learn about the chemotherapy and the types of medicines they will use. The oncologist spent alot of time with us, showed us Jack's previous mri's, talked about the chemotherapy which will start next Thursday or Friday, the first week of August, here in Abilene for sure!!! That will make things so much easier for us to not have to drive back and forth once a week to Dallas.
The course of the chemotherapy will last 70 weeks, one year and 4 months.
Jack did great with his blood draws yesterday, the nurse was going to put the emla cream on his arms to numb them for the blood draw, and I said he loves the emla but does not like the sticky tape that you put over the emla to keep it in place for the hour it needs to anesthitize the skin. The nurse said not a problem, we have some nonstick tape, what she used was that press and seal saran wrap!!!! This is such good news for us, because now I can buy this wrap and have it for when Jack will get his chemo, I can cover the emla cream with press and seal, and there is no pain when I pull it off.
Jack also learned about his medi-port surgery on this trip. I was clueless how to explain to him what a port was and did, maybe because I didn't know myself. The child life specialist, Ashleigh, was called down to talk with Jack and she showed him her doll, a boy doll, that had a port. Jack was able to see what it will look like, and touch it. She read a book to him about a little girl who got a port, and gave us the book to take home, along with many other child friendly resources for chemotherapy. The port is completely under his skin, so they access it with a needle, but when the emla cream is used there is not pain. He can get his chemo and blood draws through the port. Jack can swim with his port, which is a big deal for him, he loves the swim club, and do normal stuff, just no contact sports.
The side effects of the types of medicines Jack will be on are the typical ones we think about when we think about chemotherapy, nausea, vomiting and hair loss. A couple of months ago Rob told me he wanted to shave his (Rob's) head, so he might get a good reason to within the next couple of weeks, he and Jack can be twins. Derek would probably do it to if I let him.
We had a trip to padre island planned, but have had to cancel that, so we are vacationing at the Ambassador Suites here in Abilene a little bit this weekend. The kids love going to hotels, they are always asking when we can stay at another one, so we are looking forward to taking a vacation here in Abilene.
Keep Jack in your prayers for his surgery this Tuesday, thanks for keeping up with us.
July 30, 2005
Updates on Jack
July 26, 2005
Updates on Jack
After talking with Dr. Bowers nurse this week, it looks good that Jack will be able to take his chemotherapy in Abilene. Dr. Bowers also wanted to combine Jack's eye surgery and his Port Line Surgery, a.k.a. shunt, a.k.a., pic line....seems like there are alot of names for the thing that they will surgically implant in Jack's chest to hook up the chemotherapy medicine to each week. As of right now it looks like we will have both of those surgeries done at the same time, next Tuesday, August 2 in Ft. Worth. None of that is confirmed, but that is where we stand right now. The doctor thought it best Jack be put under anasthesia once rather than twice, and Dr. Moody, the opthamologist was flexible and moved his surgery up a month for us. Rob, Jack and I will go to Dallas this Friday to talk with the oncologist and get our education on chemotherapy, then sign off on all the paperwork.
I can feel your prayers for clarity and bravery in the last 2 days. I haven't cried once and I feel strong for Jack. I am also glad to have received some good immune system building nutrients and vitamans that Jack will be on daily now. I think that it will help his system stay as strong as it can during chemotherapy. It is called Mannatech, and our friend Cindy Byers arranged for Jack to be on a special program where he is also followed by the Mannatech people to keep up with his progress. One of the testimonials from a woman regarding the mannatech, said that she had gone through one round of chemo, not knowing about mannatech, and ended up hospitilized 3 times and received numerous blood transfusions because her white cell count was dangerously low. A friend told her about mannatech, she started taking it 2 weeks before her next round of chemo and her blood counts were night and day compared to the first round. She stayed healthy and never had to be hospitalized for low blood counts again during chemo. Her doctor told her, keep doing what you are doing. These supplements are not all child friendly, they don't have great tastes, some do, but not all, so keep praying that I find a great way to mix the powder nutrients into something that Jack will like, so that he can feel good about this too.
I called a longtime friend of mine from Arizona to catch her up on all the news, and she asked me how I was holding up, I told her that for the first many days I didn't, but then yesterday morning I thought, today is a good day, why cry today for something that is happening next week, or next year. Which ofcourse makes me think of the scripture
Matthew 6:34a, "For do not worry about tomorrow, for tomorrow will worry about itself"...
July 25, 2005
I am anxious for today to begin, I hope to hear from the oncologists office today with some information on when and where Jack is to start chemotherapy.
Jack will go through a day surgery procedure to insert a port in his chest that will the the connecting unit they will hook up to the medicine for chemotherapy. Please pray that Jack does o.k. with this. Jack is my child who doesn't like stickers on his body, or those fake tattoo's, he likes his skin free of foreign substances, so I am praying that he can adjust to the port sticking out of him.
I was at lunch yesterday with family, family from home, and family visiting from Arizona, and told someone that Tom and John Risse's mother was diagnosed with cancer this week, and Jack looked right up at me with his big beautiful crooked eyes and said, "Am I going to die of cancer?" I almost couldn't breath for a minute or so, but said right away, no honey you are not going to die of cancer. Then he went on with his conversation with his cousin. I talked with him at home a bit and asked him again what he had asked me in the restaurant and he repeated it, I told him, that he does not have a malignant cancer, "just" a brain tumor and that there are medicines to heal cancer and brain tumors. I asked him if he was scared and he said yes. I feel so incompetent to know what to say. I can give the pat answer, mommy and daddy are right here and you don't need to be afraid, and God will be with you always, God loves you, God can heal you, but I think that those words do not go to the core of his being. I think that his head is swirling, and he is not verbalizing (how does a 6 year old boy verbalize his feelings) how he feels. I have to do a better job of being strong for him. I need to be an example of strength to Jack, he see's me cry and his world is shaken. I was so overcome by this news that I spent the first 48 hours crying, then lightened up a little and now I only cry occassionally. I tried to not cry in front of him, but I could not hold back my tears. So pray for me to be strong, because I can not help him to be brave when I am not being brave.
I have thought about why I am so emotional about this news, the obvious is that Jack condition is overwhelming, but I think my heart is broken. I have a wonderful God, Jesus is my best friend, there is no minute that a thought doesn't go through my head that it is not entwined with the Holy Spirit, I want to please God, he has shown me mercy and so much grace in my life, He has forgiven me of alot, and I love Him alot, I can not separate myself from Him, nor would I ever want to, I do not think I could walk one day on this earth without clinging to the hope of salvation I have and seeing the face of Jesus when he calls me home. So that leads me to my struggle right now, I have prayed with faith that Jesus would have healed Jack after the surgery, the spots would go away, no new tumors to be found, not only did I pray in faith, I believed. I believed with every ounce of my being that this would be so, I prayed it as if it had already happened, I prayed like the Bible tells me, in Jesus name I claimed these prayers. I asked, but it was not given.
Do I think that God's plan is my plan (or visa versa), am I arrogant enough to think that just because I love Him so that he will answer my prayers as I would wish and in my timing. NO. But I have had to pick my self up off the floor in the disappointment because it didn't work out as I had planned, prayed, and hoped.
I have had a rebellious heart over the last 4 days, like a toddler having a tantrum in the middle of the grocery store. And God just as faithfully as ever stood over me waiting for me to look up at Him as he was holding out his hand to lift me from my wallow. I am grateful that he shows me mercy. I have lifted my hand to have him pick me up, and carry me through this journey as the mother of a child who needs her.
Pray for our faith, and perserverance, and for me to be strong in front of Jack. Mostly pray for Jack, pray that God is shining down his healing hand on my son.
July 21, 2005
Updates on Jack
My last post I wrote the options about what could happen to Jack's tumor. I didn't even let my mind go "there" but now we have arrived to "that" place.
Jack's mri was yesterday, today was clinic. Our neurosurgeon, Dr. Price, along with an oncologist, Dr. Bowers, came in to tell me that Jack's fragments of tumors left from the surgery are growing at a very fast rate. There was a grouping of abnormal cells (next to the tumor that was for the most part removed back in April), that grouping of cells has turned into a tumor also. So we are looking at starting chemotherapy in the next 2 weeks. Hopefully we will be able to be here for that, if not we will have to drive to Dallas. Cooks Hospital has a facility here that can give chemo treatments to kids, but as Jack is a patient from Children's I don't know how that will work out. We will hopefully find out the plans over the next couple of business days.
Dr. Bowers said that the course of this chemotherapy will last from 15-18 months.
What this new picture looks like to me I have no clue. I don't know what to even think about this.
One thing Dr. Bowers said was that he thinks of chemotherapy as medicine that makes tumors go away. That is what we are counting on. He also said that this type of tumor does generally react well to chemo. So our journey has taken another turn. I don't know where the road goes, but I know on this journey Jack will have Rob and I, and all the rest of our family, church family, and friends walking alongside. I might have a stream of tears falling, but that does not mean that I am not faithful that God is in control, but grieving for what Jack must now enter as a 6 year old.
July 18, 2005
Updates on Jack
Jack and I are off to Dallas tomorrow morning, Tuesday, July 19. We will have an eye follow up appointment where we have been squeezed in....and will have quite a wait I am told by the nurse. Then off to the Ronald McDonald House to check in and stay during our visit there. We had a wonderful family, the Barton's invite us to stay with them when we come to town for follow up stuff, and I would have liked to visit with people who have walked this journey before...but Jack having felt like he missed out on the Ronald McDonald House experience while staying in hospitals when we were there, felt like we needed to be there in stead. So we will stay there.
Wednesday morning we will head off to the mri at Children's Hospital. Then we will have the rest of the day to play around Dallas, (pray that I will not get lost on our excursions), I want to make the trips to Dallas fun for Jack so that when we go back each time it is not all about mri's and doctors. He might even look forward to the trips if he has good memories to think about. Thursday morning we have clinic. At that time Jack's neurologist will have checked Jack's mri and will know if the left over tumor in his sweet head have either; disappeared (I have prayed for that), stayed the same (that would be good also), shrunk (even better), or grown (I am not going there). There are a miriad of other doctors there to consult with us on any needs Jack might have and then we will head back to Abilene.
Please pray for a safe trip, and for my directions around the big city to be good. And most importantly that Jack is healthy!
I signed up on the PBT (Pediatric Brain Tumor) online support group this week, because Jack is definately struggling with emotions, ups and downs....I thought I might be able to read up on other experiences with recovery after surgery. I could not even post my experiences with Jack because I was so overwhelmed by other struggles parents are living through with their children. 2 children died within 12 hours of signing on, and another little girl, who is 4yrs. old, had a scan and they found 8 more tumors on her spine....I can go on and on. I cry just thinking about it. I am so grateful Jack didn't have cancer and that he is alive. I am grateful that the Posterior Fossa Syndrome came and went within a month, when other parents are struggling with their children being 3 months out from surgery and still crying and whimpering all day. A mom on the sight said she was about ready to lose her mind. I know how scary that is to go through, but I had only to go through it for a short time compared to her situation. I pray for all these parents and children and siblings because only God can be their hope and salvation through the low valleys they are drowning in.
So I am grateful for Jack's emotions, his eyes are open, he is talking, he is eating and drinking, he is my son. His situation has been nudged by God's fingertips to move him along in his recovery at God's speed.
Thank you for keeping up with our family during the recovery time, there is not as much to write, but your continued prayers are felt. And your continued interest in Jack is amazing to me. May the Holy Spirit fall on you today and let you know in your heart how much you mean to me, because words are not enough.
July 09, 2005
We saw Dr. Moody today. The visit went well, and Jack didn't even have to get his eyes dialated. That made all of us happy.
Dr. Moody did some testing on Jack's vision and felt sure that Jack's eyes could not be helped by patch therapy. He said that most of the time when there is a sudden trauma to the brain that patch therapy would not be able to get his eyes back straight. Only surgery can help him. This surgery is a day surgery that will be done at Cook's Children's Hospital in Ft. Worth. Dr. Moody will surgically realign a couple of the muscles in each of Jack's eyes. He said that we should be able to go home that same day, and that Jack could be back at school within 2 days. This Dr. seems to know his stuff, and he actually developed this particular surgery which has been used by doctors all over the world. He has operated on over 10,000 children and moved over 30,000 muscles in his 30 years of practice. Dr. Wadley says "He's the man!"
Jack took all this news today in stride. Didn't even seem to bother him, or upset him in the slightest. He sat and listened very intently to understand what would be happening, and seemed to have some sort of a grasp on the situation.
Keep Jack in your prayers.
July 05, 2005
Updates on Jack
We will be seeing Dr. Moody, a Dallas opthomologist, who comes to Abilene once a month, this Saturday at 12:20. Keep Jack in your prayers for a good experience (or even tolerable) He did not enjoy the optomotrist (sp?), the doctor himself was wonderful, but it is hard to sit still while you have someone in your face with a light shining in your eyes. Jack cried out the numbing drops that helped the dialation drops not hurt on that visit, so it was a tough one.
Jack is enjoying summer. I have to say though as the days pass this whole experience of Jack's tumour is becoming realer and realer to me. During the hospitalization I did what had to be done for Jack and that kept me busy. Now all that has had time to sink in, and I find myself on the verge of tears alot. I look at his scar and feel a tightness in my gut and tears start to fill my eyes. I can normally pull it together, but my heart trembles for Jack and all he has been through and continues to go through so many times a day. I just hold on tight to God, and I know he will lead us through this with all we need from Him.
Jack is feeling life is a little unfair with all the stuff that is happening to him, please pray for Rob and I for wisdom in guiding his little mind through this road to recovery. God bless ya'll.