Saturday, February 9, 2008

Friday

Kevin is very uncomfortable. He has the port for chemo in the middle of his chest, his head is still bleeding from the shunt they put in. I don’t think the stitches were done very well. He gets mad sometimes and then starts crying saying he doesn’t want to be a ‘jerk’ to others. He has every right to be mad, angry and depressed. But as he said the other day, ‘mom, getting angry doesn’t get me anywhere.’ He is so smart for seven. This is very scary. I told Kevin today that the disease we keep referring to is cancer. Sometimes when he is in a lot of pain he yells at us that we are trying to kill him. When he is calm I do my best to reassure him I am doing everything I can to save his life.

I am working on getting him fatted up before Chemo. Lots of high calorie, high protein food. I am trying to get him to drink Ensure as much as possible. If anyone has any ideas on healthy foods/meals that are loaded with calories and protein please share!!!

We meet at least a dozen or two specialist, social workers, etc. that I guess we will be working with as we go through this whole process.

I am starting to not cry as much and focus on what needs to be done to get Kevin through this. But there are moments where I just long for the time when I thought I was so blessed to have 3 healthy children. It looks like Kevin will come home for a couple of weeks, maybe as soon as next week. Each day with him is a blessing. I guess none of us have a guarantee.

rachel

6 comments:

Marcia Smith said...

Mike and Rachel,
Please know that Dominic and I are praying for you and your family. We are truly sorry for what all of you, especially Kevin are going through right now. I'm sure that you keep questoning "Why" as we all do, unfortunately none of us have that answer.
Be assured that we will do anything that we can to help all of you. Don't be afraid to ask for help.
Also, I know that Children's Hospital has some great Doc's and that you are being faced with the most difficult decisions that you have ever had to make in your life. I also know that driving to downtown Detroit and staying at the hospital for an extended length of time can wear on eveyone. I have some family friends that have used a great neurosurgeon at U of M. If you would like more information please give us a call and I would love to talk to you. We hope that Kevin will become more comfortable and continue to be a brave boy!!
Marcia Smith

Kathy said...

I found your blog through a google news alert for medulloblastoma.

My son was diagnosed with a supratentorial PNET in 2003, similar to medullo but with a grimmer prognosis. Another name for medulloblastoma is infratentorial PNET.

We are now 4 1/2 years from diagnosis and just returned from St. Jude with the all clear.

None of us knows what the future holds for our child, but I want to encourage you, we went through some terribly rough times and it is such a gift to see him living his life now, something I've never taken for granted.

I am one of the moderators for the pediatric brain tumors yahoo group, I'd like to recommend it to you:
http://groups.yahoo.com/group/pediatricbraintumors

There is also a medullo-specific group that is smaller, if you are interested in joining that group, go to:
http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?SUBED1=medullo-pnet&A=1

I would like to suggest that you consider contacting St. Jude before making your final treatment decision, they treat more medullo's than anywhere else in the world and we have been very happy with their approach.

Please contact me if I can be of help to you, my email is bkbell at gmail dot com and my phone is on my son's website, we are in California.

I am so terribly sorry you are going through this right now.

restenman said...

Hi Rachel,
My heart goes out to all of you, and especially dear Kevin. I am keeping you all in my prayers. May I suggest organic fruits for smoothies for Kevin, he will love them and then add a good whey protein and other nutritional supplements. Garden of Eden has a good protein powder. They have childrens vitamins, minerals also.
Stay close to the Lord, He will get you through this.
God Bless,
Donna Stenman
Carole Mother in Law

The Greens said...

Hi Rachel,
I just felt I had to tell you my heart was with you today in church! You are ever in my prayers.
Take Care,
Kate from MOPS

Jan said...

Rachel, Janine got me up to date on all that's been happening. I am so sorry. We are praying hard for Kevin and your family. I have an idea for something high protein & high calorie. Paul drinks "Muscle Milk" when he is training hard for swimming because he is a picky eater and needs a huge amount of protein, etc. I get it premade, which is easier, but you can buy the powder at GNC. I get it at Costco in a case. Paul says it is much tastier than Ensure. I also make him fruit smoothies every morning to go with his breakfast. The Chemo will make food taste funny to Kevin, so small meals more often is good, so shakes are great. Jelly Bellies are good too! We love you all, Aunt Jan

Allen family said...

Rachel,
I had no idea that any of this was going on until today. We will be praying for your sweet little Kevin everyday! I wish there was something more we could do, let us know if there is! Know that our prayers are with you and your family.
Love, Laurel