Tuesday, July 31, 2007

Highs and Lows












Similar to the past couple of weeks, the last 24 hours have been quite the roller coaster of emotion. We had a planned visit to MD Anderson (MDA) yesterday (Monday) to get James' blood count and to potentially have a transfusion of platelets and/or hemoglobin (red blood cells) if needed.


First, let me "briefly" provide a picture of what a visit to MDA entails. We awake early - 4:45 am (Nana), 5:45 am (Joy), 6:00 am (James), 6:57 (Greg) - to leave at 7:00 am for our 8:30 am appointment at MDA. When we arrive, we sign in and are "quickly" called on to get a medical ID bracelet and a restaurant-style pager. When the pager begins to vibrate, we take James to an adjacent small room where his blood is drawn. Considering that he is 13-months old, he doesn't know if he is getting poked, prodded, or is going to be forced to do some other undesirable task. Most of the time, blood is quickly drawn from his CVC (catheter just below is right collar bone) with no pain to him. Then, the waiting game occurs. We wait 1 - 2 hours for lab results before seeing his nurse, Carmen, nurse practitioner, Lisa, and Dr. Wells. Each professional takes a great deal of time to listen to our latest concerns, examine James if necessary, and provide us results from that day's labs. The reason for the visit (transfusion, chemo, check-up, bone marrow aspiration) determines the length of stay. We are finding that on a good day, we are home by 2:00 pm and on a long day, we are home by 5:00 pm. Right now, this is occurring about two days per week. It's also important to note that in the MDA Children's and Adolescent Clinic waiting room, there are children and teens at varying levels of treatment with any number of types of cancer. Some children are in wheel chairs, needing to lie down, feeling visibly nauseated, wearing masks and gloves, or having difficulty holding their head up because of weakness. There are also children that are laughing, playing in the playroom, coloring, singing, pulling at their parents to "come play with me" - all the while oblivious to the fact that they have cancer. At peak time (late morning to early afternoon), the waiting room is packed with children and their caregivers. That's it! One of our routine visits to MDA.



I thought that describing a routine visit would provide context for today's updates. James seems to have a sense as to when we will be going to MDA. On Sunday night, he woke every 45 minutes, requiring diaper check, temperature check, and being rocked back to sleep. This made for an exhausted group of people heading into Monday's visit. During our visit, blood was unable to be accessed in James' CVC. Not good! We knew that we have been diligently cleaning his CVC, keeping his site clean, and have been doing the regular flushes of his CVC. So, we are asked to wait for 30 minutes, then return for another attempt. The first try...no luck. Second try...blood was drawn. We come to later find out that it's typical for this to occur because of clotting somewhere in the CVC. An anticoagulant was injected to break up the clot and the CVC was back in operation. This is important because we don't want James be poked with a needle for a blood draw. Results of Monday's blood draw revealed that James' platelet count was in the normal range. That's right! The doctor said that this is a sign that James' marrow is starting to show signs of working correctly. His red blood cell count was relatively stable, but his white cell count was still low. Dr. Wells noted that white cells are typically the last to rebound. These results do not change any aspect of treatment. We will always be committed to three years of treatment. These results help us see that treatment will resume as planned. The doctor was pleased so we are pleased. Praise the Lord!




As we are quickly finding, just as we can experience a high of good news, we can also experience a low of not-so-good news. For much of the day today, James has not been himself. He was fussy, irritable, couldn't be easily soothed, and had a low grade fever. As a precautionary measure, Joy and Nana took to MDA for to be examined. The doctor thought that James was demonstrating enough of a fever to warrant IV antibiotics and an overnight stay. So, he is staying overnight at MDA with Joy and Nana. I was working tonight and will be tomorrow as well, so I stayed at home. We feel your prayer and know that our God is faithful! Thank you for your continued support. Here are our most recent prayer requests:


  1. James' fever would dissipate and that they would all get a good night's sleep at MDA.

  2. James' CVC would stay continuously operational so that he does not have to be poked with a needle for blood draws (which occur often!).

  3. James' white blood cell count would begin to rebound and the his neutrophils (bacteria-fighters) would also rebound.

  4. James would sleep for longer periods of time so that we can all get good rest.

  5. James' diaper rash would continue to heal.

I also wanted to share an excerpt from an email sent to us by our amazing, godly 17-year-old nephew:

"'Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything.' James 1:2-4 'Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him.' James 1:12
These verses may at fist seem shocking or insensitive at first, especially due to the mammoth of a trial you are facing right now, but James is talking about finding joy in the results of the trials, not the actual trial, because those difficult times produce good qualities, such as perseverance. Later it on it even goes to show the result of persevering the trial, which is the crown of life.
I know that this might seem very, very unfair to happen to someone, let alone a 13 month year old, who also is your son, but I wanted to send you this verse as reassurance that God has a plan for this trial and that he'll never give you more than you can handle."

5 comments:

Peggy Hubbard said...

Please know many people in Lewisburg, TN are praying for all of you. Paula, I am expecially keeping you in my prayers and asking God to give you strength as you serve in an important way. I have often thought back to our conversation in my office about your career plans. HE knew you were going to be needed this Fall in ways HE was preparing you for. I am continually amazed at how completly God takes care of us. Stay strong and feel the prayer support you all are getting.

Love,

Peggy Hubbard

Peggy Hubbard said...

(Paula, sorry about the spelling errors. I guess the educator in you caught them all. I'm not a blogger so this is all new to me!)

angelasustala said...

Your family is in our prayers - and we have many praying for you in Iowa and in Texas as well.
I remember hearing after Jordan was born that its not so much that God doesnt't give us more than we can handle as much as God EQUIPS those He calls. He is so very faithful and will equip you guys in ways you can't even imagine now! He has prepared the way for you ... and we feel honored to be allowed to watch His ways unfold for your family during such a difficult time.
Love, Eddie & Angela Sustala

Jana said...

Dear Greg and Joy,
Great to see the recent pictures, and I especially like James with hair sticking straight up. Wow, your description of a typical day trip to MDA sounds incredibly grueling, and must be so exhausting for all of you. Thank you so much for sharing your nephew's wise and mature words - we can all learn from him...

Love, jana

Anonymous said...

Joy and Grey.
Remember what Romans 8:35 says - what shall separate us from the love of christ? shall trouble or hardship or prosecution or famine or nakedness or danger or sword? ...37 No, in all these things we are more than conquerors through him who loved us. 38- for I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future nor any powers, neither height nor depth nor anything else will be able to separate us from the love of God.
We are praying for you and we know that the glory of the lord will be manisfested through this trial and you will come out like a pot of gold - new and transformed.
Bukky, Tunji,Toni and Tide next door.