Sunday, February 17, 2008

Yes, I know it has been far too long since I updated. Not that I'm trying to make excuses, but we have been having issues with our service since we have been home. It truly is awesome to be home. "There's no place like home." Elijah has done pretty well and knock on wood has not had a fever!!! We have been back and forth to the outpatient clinic three times for further chemo treatments. Elijah is now in the second phase of his treatment, called the consolidation phase. The doctors told us that with the chemo durgs he would be taking he would feel very lously and one of the major side effects would be that they would drop his counts. Were they ever right!! Two weeks ago Friday Elijah received a transfusion of blood and then this last Friday he received a transfusion of platelets. His ANC is also very low, so EXTRA careful right now to say the least. He has otherwise done okay with everything. He has started to get sick occasionally, but he usually gets sick and then immediatly after looks at us and smiles. Elijah also starts his radiation tomorrow (Monday 18th). We had to go for the consultation and get him fitted for this mask that they use for the radiation. He has to be in the same exact position for this every time he goes. He will get a total of 8 radiation treatments Monday thru Thursday of this week and then the same for the following week. When we went for the consulation, they did a test run of the sediation that they will use. They used the same drug that they used for him in Iowa City when he was intubated, called Profofol (sp?). It worked well, but like always he needed just a little bit more than normal. The sediation team that worked with him is great. They don't hesitate to give him what he needs to stay asleep, and still be safe. It will for sure be a long week of driving back and forth to the hoispital every day. Elijah really seems to be a different person since we came home. The week before last he starting showing great signs of improvement. We showed him him how he could stand up on his own and it didn't take him long to get the hang of it. He can now go up the stairs himself, but goning down he still needs a little help with. It's amazing how much he has had to learn again. It's like having to 1 year olds. Speaking of 1 year olds, Alivia has had a rough few weeks. At first I thought she was detoxing from all the attention she got while we were in the hospital. Then I realized that not only did she have ear infections, but she was also trying to cut 6 (yes 6) teeth all at the same time!!! I don't know whats more difficult all at the same time, or one here and there over a peroid of time. She was not sleeping and did not want to be put down, EVER!!! She is starting to do better now, but her mouth really did look painful for a couple of weeks. Hopefully she will be done for awhile!! On Friday the doctors told me not to be surprised if Elijah gets a fever this weekend because his ANC is so low, and now that it is Sunday afternoon I hope that we can make it through the rest of the week too!! I can't imagine the day he has to be admitted back to the hospital, eventhough I know it's coming. I hope people haven't stopped reading this blog because I didn't update for so long. Please pass the word that I'm back online!!! I will try to keep you updated on the progress of his radiation. We love you all!!

13 comments:

Sylwia Lipinska Hardman said...

i still look at your blog and pray for Elijah. you guys sure have had your share of challenges. we miss you lots and wish we were closer so we could help. you are an awesome family. keep up the good work!

sylwia hardman

Stacy and Isaac said...

Yay! Glad to see an update =) We've all been fighting that flu bug and just getting over it now... Ep is cutting (I think) 4 teeth as well at the same time... and took some of her first steps tonight!
We feel ya on the no sleep pain!
One of these days I'll get back over and grab my coat outta your closet, HA! Let us know if we can help in any way.

Anonymous said...

Thanks for the update - I was starting to worry! It's great to hear that Elijah hasn't had any fevers (Tava & Cael still pray that "Elijah won't get fevers." every time they say a prayer! Poor Alivia! I really hope she's feeling better. That had to have been rough for you guys! Keep up the great work!

Stephanie Ruby

Anonymous said...

Thank you very much for the update. I've heard some positive things second hand, which is great, but its even better to hear you talk about the ups and downs. I hope you have a great week! Love, The Henry's

Mark, Holly & Boys said...

Good luck with all your craziness this week. Gimme a call when you get a chance.

Rosie said...

Just dropping a line to say "hello," and let you know I was thinking of you guys. Love ya, Liz

tonya said...

so good to hear about your little family. I cannot believe all of the running around that you do. I am grateful for you that Elijah is doing well, but it must be so much work to keep him healthy. I am so glad to see your postive attitude it is so encouraging. We miss you guys!!

Heitmann Family said...

Glad to hear you guys are still hanging in there. I bet you have been really busy with all you have to manage!! Our prayers are still with you and Elijah for continued success!!

Anonymous said...

Hang in there sweetie - I'm still thinking about you guys every day. Elijah is a strong kid and will bounce back quicker than you think. If you need anything, just call.

Aunt Keryl

Anonymous said...

Hi Elijah and family,
I am also a mom of a child with cancer...I just last week made a plea to form a support group for all of us parents...we are having a meeting this Friday at the Heart connection...at 12:00. Let me know if you would like more information...this is just a planning meeting...we are planning just how to support each other and newly diagnosed families...

Please call anytime...222-0199...or email-lmhulsing@msn.com

Prayers for you continue.
Lisa Hulsing, West Des Moines
Mother of Regan...(Carepages.com, "BraveRegan)

Anonymous said...

We are so glad to hear that you are home! Best of luck with Elijah's radiation therapy. So sorry to hear Alivia has had her own struggles - you have your4 hands full! We continue to pray for Elijah and your family.

Love,
The McOwens

Courtney said...

I'm really glad that he is doing better. I think being home would make anyone feel better. Good luck with the radiation this week, and good luck with Alivia. For me, I think getting more teeth at once was better than one after the other.

The Robinson Bunch said...

im glad that things are looking better for you and your family. I hope that they continue that way, so that you wont haveto go back to the hospital. we will be praying for you guys, The Robinsons