Friday, September 5, 2008

too much information

It's always ends up being an interesting reaction when you think you've come to terms with something or think you have a good grasp on a situation, only to then have it actually spelled out in plain reality and realize that maybe actually hearing it wasn't as easy to swallow as you simply thinking it.

Did that extremely long sentence make any sense??

Today a few other mothers on the transplant floor and myself had to attend a "discharge class". Ethan is not anywhere close to being discharged right now (he has still not shown any leaps in his engraftment numbers - we are at day +24 since his transplant), however, the information to get you prepared for your "life after transplant" can be given at any time. And since Ethan has done so well (meaning fever-free, infection-free, taking meds by mouth, and hearty appetite!), they believe that when he finally does engraft, we may be able to go home shortly thereafter. But, this particular teaching class has to be completed first, so they went ahead and added me to the session today.

Adam and I knew going into the transplant phase of Ethan's treatment that when the transplant was over, and we were able to go back home, Ethan would need to be in extreme isolation from the rest of the world for the next 9 to 12 months. No public places, no interaction with other people, no one coming into our house, etc. And today's info session helped to further explain why this is so important. Basically, even though the donor cells would have grown, his immune system has to rebuild itself. Everything in his body is "new" and has to "learn" how to function all over again. For this reason, his immune system is very, very weak for about a year after transplant. And any infection or exposure to illness could be very dangerous for him during that time. Now, he can slowly be allowed certain freedoms throughout the course of that time depending on how well he had been doing, but the "freedoms" would be being allowed to go to the grocery store at 7:30 in the morning when it's not crowded, or going to a restaurant at 4:00 in the early evening when the peak crowd has yet to arrive. But again, that's only about after 7 to 9 months of being in complete isolation... aside from being outside, outdoors with no crowds is okay.

Anyway, we kinda understood all of that, but learning everything else in this class just reiterated to me that this whole situation will not be over for quite some time. For the next 9 to 12 months: Any fever results in re-admission for observation - even if it's just a fever from teething! We can't assume anything, so everything has to be monitored. Any new rash, bruise, appetite change, change in stool, change in his urination amounts, vomiting, cough, runny nose... anything... requires a call to the doctor and potentially an emergency room visit immediately following. Which, depending on the examination could result in re-admission for treatment of infection, etc. We need to bring a packed bag anytime we come for an outpatient visit as it's not unlikely to be re-admitted for observation at any time, for any reason. We need to be watching for shingles, seizures, swelling around his central line (neck and face), bleeding of anywhere... the list goes on with other areas of focus being his eyes, mobility, mouth, digestive system. Not to mention the whole Graft-versus-host-disease list of symptoms to be watching for (which is the rejection thing I've mentioned to you before).

This is just a "pea sized" description of the amount of information that we have to be aware of and watching for when we are home with Ethan for the next year while his immune system continues to grow stronger and develop again. It's kind of a mess when you try to mentally absorb it all. Not to mention coming to terms again with just how isolated and separated our lives will be for the next year - Adam and I needing to take turns doing things (running errands, going to church, our own personal doctor appointments, etc) so that the other one can stay home and care for Ethan.

The only thing that kept going through my mind was that this... all of this... was not going to be out of our lives any time soon. But, you can't get worked up about something like these rules and restrictions because they are a necessary step in Ethan's overall healing process and taking care of him in the best way is the top of my priority list. But man, do I want some normalcy back into our daily lives. I want..... I want..... I want..... so many things.

Well, what I really want is for our little boy to be perfectly healthy and whatever sacrifice that requires, so be it. He's our son. His life has given deeper meaning to ours. And God's power has defied all the yucky stuff we were told to anticipate during transplant, and that same power can defy all the yucky stuff we're told to anticipate after transplant, right? Right.

My mind is about fried on this Friday, but....

Before I go, I want to share with you a part of the devotion that was shared at my baby shower (almost a year ago in November!) by one of my most favorite of Christian women. She took each letter of Ethan's name and gave it meaning. How incredible the work of the Lord when He gave this to her to share with me, knowing as only He could know, that one day I would need to cling to the special reminder. Keep in mind as you read through each letter, that this was given to me during my pregnancy... no thought of any cancer or illness or anything at that time. Only the anticipation of a little boy's arrival. Thank you again, Mary Parker... and thank You, Lord for your tenderness towards me.

Enjoy Ethan
Thank God for every moment
Have faith in God's plan for you and your family
Accept God's perfect plan for you right now
Never give up

Truer words were never spoken....


Lorri said...

Wow. That prophectic prayer and charge over you and baby Ethan gave me chills.

Thanks for sharing your heart. God with you on this very long cancer and recovery road.

Peace to you dear sister in the Lord, His Peace be upon you, Lorri

Hollie said...

WOW! That is amazing to see how those words meant so much before little E was even here. Just a huge reminder that HE is in control and guiding us at all times. Thinking about you, girl! Big HUGS!



James 5:11 >>
Geneva Study Bible
Behold, we count them happy which endure. Ye have heard of the patience of Job, and have seen the {e} end of the Lord; that the Lord is very pitiful, and of tender mercy.

(e) What end the Lord gave.

People's New Testament

5:11 We count them happy which endure. We believe of them that all such have a final reward.

Ye have heard of the patience of Job. The enduring patience, which refused to distrust God, is meant.

And have seen the end of the Lord. The conclusion in the case of Job wrought by the Lord, and how his endurance was blessed. See Job 42:10 The blessing that came on him is a demonstration that the Lord is full of pity, and merciful (Revised Version).

Wesley's Notes

5:11 We count them happy that endured - That suffered patiently. The more they once suffered, the greater is their present happiness. Ye have seen the end of the Lord - The end which the Lord gave him.

Jamieson-Fausset-Brown Bible Commentary

11. count them happy-(Mt 5:10).

which endure-The oldest authorities read, "which have endured," which suits the sense better than English Version: "Those who in past days, like the prophets and Job, have endured trials." Such, not those who "have lived in pleasure and been wanton on the earth" (Jas 5:5), are "happy."

patience-rather, "endurance," answering to "endure": the Greek words similarly corresponding. Distinct from the Greek word for "patience" Jas 5:10. The same word ought to be translated, "endurance," Jas 1:3. He here reverts to the subject which he began with.

Job-This passage shows the history of him is concerning a real, not an imaginary person; otherwise his case could not be quoted as an example at all. Though he showed much of impatience, yet he always returned to this, that he committed himself wholly to God, and at last showed a perfect spirit of enduring submission.

and have seen-(with the eyes of your mind). Alford translates from the old and genuine reading, "see also," &c. The old reading is, however, capable of being translated as English Version.

the end of the Lord-the end which the Lord gave. If Job had much to "endure," remember also Job's happy "end." Hence, learn, though much tried, to "endure to the end."

that-Alford and others translate, "inasmuch as," "for."

pitiful . of tender mercy-The former refers to the "feeling"; the latter, to the act. His pity is shown in not laying on the patient endurer more trials than he is able to bear; His mercy, in His giving a happy "end" to the trials [Bengel].

Anonymous said...

I love you all!
Hugs and sloppy kisses!
Mary Parker

Michelle Riggs said...

I stumbled on your blog. You have a beautiful son. I will be praying for you.

My 3 year old daughter was recently diagnosed with ALL. Our journey is hard, but our family is blessed. God is so good. I will be praying for you.