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Natalia - Journal

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Posted 2014-10-29T17:13:28Z

RESTING in the shadow of the ALMIGHTY

Pentamidine (By breathing) Pentamidine can cause allergic and TOXIC side effects.....Pentamidine is used to treat Pneumocystis carinii pneumonia (PCP), a very serious kind of pneumonia. This kind of pneumonia occurs commonly in patients whose immune system is not working normally, such as CANCER patients, transplant patients, and patients with acquired immune deficiency syndrome (AIDS). In addition, your doctor may prescribe pentamidine for some other medical problems caused by protozoa. This medicine may also be used for other conditions as determined by your doctor. Pentamidine may cause some SERIOUS side effects. BEFORE you begin treatment with pentamidine, you and your doctor should talk about the good this medicine will do as well as the risks of using it. Pentamidine is to be administered only by or under the immediate supervision of your doctor. Pediatric Although pentamidine has NOT been widely used in children, this medicine is not expected to cause different side effects or problems in children than it does in adults. Possible SIDE EFFECTS Call your doctor right away if you notice any of these side effects: Coughing, wheezing, or trouble breathing Skin rash, itching, or hives Sharp chest pain Change in taste or a METALLIC taste in your mouth******** NAUSEA, appetite loss*********** Sore throat or hoarseness Dizziness...etc, etc On Monday, she also received her monthly inhaled antibiotic, Pentamidine. It keeps her from getting bacterial infections in her lungs. She has had spontaneous nausea/vomiting/metallic taste in her mouth, etc for the past 6 months and we couldn't really pinpoint the cause all this time. This week after her treatment, she has been getting sick at school daily.......come to find out, it's been the Pentam all along:( Psalm 91:11-16 For he will command his angels concerning NATALIA to guard HER in all HER ways. On their hands they will bear Natalia up, lest Natalia strike her foot against a stone. Natalia will tread on the lion and the adder; the young lion and the serpent natalia will trample underfoot. “Because he holds fast to me in love, I will deliver her; I will protect her, because she knows my name. When she calls to me, I will answer her; I will be with her in trouble; I will rescue her and honor her. With long life I will satisfy her and show her my salvation.”

Posted 2014-10-29T17:00:00Z

Scan day!

Monday was our oncology/scan day. We were at St. Joseph's bright and early (7:30 am) for an MRI of her leg. Things are a bit different without the port, she now has to get stuck in her arm with a needle whenever blood draw or a contrasted exam is needed. She got upset at the thought of the needle in her arm, but she quickly gained the courage to go through with it and told the sweet MRI tech "I'm ready". As I sat in the room with her, ear plugs in my ear......through the loud sounds of the machine, I hear a faint I listen closely I hear Natalia belting out to the song by Hillsong United "Oceans" on the Joy FM. She was listening to the radio on her headphones and was singing...LOUDLY! After the scan, I asked her about the singing and she said that she started feeling scared in the tunnel, and the song went on the radio at the perfect time..........isn't that something?!?! Even in the trivial moments of life......God's perfect timing is available daily.......reassuring us that JESUS is with us as we walk through life! At her darkest moments, in her distress, she looks to JESUS....and he has NEVER let her down! The day ended with BOTH arms poked...with JESUS by her side through it all!

Posted 2014-10-21T19:18:25Z


The moment we have been waiting for.......... CONGRATULATIONS, NATALIA SOFIA!!! You have been cleared for FULL WEIGHT-BEARING STATUS by your favorite surgeon!! :) The bottom of her femur bone has grown and fused with her native bone. AMAZING! The top of her femur hasn't done just needs more TIME! He gave her permission to move her status to weight bearing and with the help of physical therapy........IN THE NAME OF JESUS, she WILL BE WALKING ON HER OWN VERY SOON! Psalm 95:1-7 Come, let us sing for joy to the Lord; let us shout aloud to the Rock of our salvation. Let us come before him with thanksgiving and extol him with music and song. For the Lord is the great God, the great King above all gods. In his hand are the depths of the earth, and the mountain peaks belong to him. The sea is his, for he made it, and his hands formed the dry land. Come, let us bow down in worship, let us kneel before the Lord our Maker; for he is our God and we are the people of his pasture, the flock under his care. Today, if only you would hear his voice, Psalm 118:27-29 The Lord is God, and he has made his light shine on us. With boughs in hand, join in the festal procession up to the horns of the altar. You are my God, and I will praise you; you are my God, and I will exalt you. Give thanks to the Lord, for he is good; his love endures forever. Psalm 100:1-5 Shout for joy to the Lord, all the earth. Worship the Lord with gladness; come before him with joyful songs. Know that the Lord is God. It is he who made us, and we are his; we are his people, the sheep of his pasture. Enter his gates with thanksgiving and his courts with praise; give thanks to him and praise his name. For the Lord is good and his love endures forever; his faithfulness continues through all generations.

Posted 2014-10-21T03:33:31Z

JESUS restores and renews.....

Dealing with the aftermath after a long, arduous battle with cancer, has not been easy. It's like going back to your puzzle and trying to fit a puzzle piece back into it, when it has completely changed its shape. There are so many unknowns and so many different factors and aspects of life that have been changed.......things are definitely not the same. WE are not the same. The adrenaline has worn off and we are running on empty........void. Natalia started school as she was growing in her new hair...(yay!!)...only to be made fun of the way she "looks like a boy" and she is using an "old people" walker. Heartbreaking. Since the beginning of school, she has had 2 bouts of cellulitis from mosquito bites and 2 tract infections, which resulted in 4 treatments of antibiotics. Her pediatrician stated that her system needs to get stronger to fight off these pesky infections and scolded that I needed to do so by keeping her at home.......even if she misses a lot of school. BOTTOM LINE: her health is MORE important. Due to the intense (chemo & radiation) therapy that she received while undergoing treatment for Ewing's sarcoma, we were advised that there could be TEMPORARY &/or PERMANENT side effects. Some children start showing signs 2-3 yrs out, while some show signs right away....Natalia began showing signs right away. While she is an ABOVE average student, she has had issues at school in SOME areas.....of course, common core curriculum doesn't help...:( The biggest sign was a week ago.....when she was doing something we have done as a family for at least the past 3 years, and she was disoriented, confused and lost her recollection. TOTAL memory loss. Thank goodness for amazing GODLY friends, who stood there and witnessed the entire episode, and then helped me maintain my composure while praying thru the episode. What a difficult moment to witness....the reality is that my baby is not herself. The reality of the events stated above does NOT take away from the fact that there IS A SOVEREIGN ALMIGHTY GOD, JESUS CHRIST. It is HE who sits on the throne, and sees EVERYTHING. HE who created our eyes sees ALL.....Psalm 94:9 He who planted the ear, shall He not hear? He who formed the eye, shall He not see? Psalm 34:15 The eyes of the Lord are on the righteous, And His ears are open to their cry. Proverbs 15:3 The eyes of the Lord are in every place, Keeping watch on the evil and the good. It is JESUS who is in control of Natalia's life...NOT the doctors, NOT us. It is HE who will decide her outcome, no one else.....therefore, we MUST focus our eyes on JESUS. JESUS will renew our strength to keep on keeping on! JESUS will GIVE US THE VICTORY over these hurdles for HE is our HOPE, our DELIVERER, our STRENGTH, our PEACE, our REFUGE in times of distress.... Nahum 1:7 The Lord is good, a refuge in times of trouble. He cares for those who trust in him.... Last week, she received her heart check up and EVERYTHING looked great! Praise JESUS! We are still waiting on a urine culture to recheck her kidneys. This week, she sees our favorite surgeon (Dr. Cheong) to check her leg (praying it has grown and fused), and she will see a neurologist for the cognitive and memory loss issues. Thanks in advance for your prayers!! Isaiah 40:28-31 Have you not known? Have you not heard? The everlasting God, the Lord, The Creator of the ends of the earth, Neither faints nor is weary. His understanding is unsearchable. He gives POWER to the weak, And to those who have no might He INCREASES strength. Even the youths shall faint and be weary, And the young men shall utterly fall, But those who wait on The Lord shall renew their strength; They shall mount up with wings like eagles, They shall run and NOT be weary, They shall walk and NOT faint. This promise is ours for the taking....TRUTH.

Posted 2014-10-01T14:22:35Z

Part 2......BUG BITE!!

Natalia has another bug bite with cellulitis in her heel....making it painful to walk. Her doctor put her on her 3rd round of antibiotic this month, AND Benadryl around the clock.  Praying for a speedy recovery from these bites, and that she may resume her normal school schedule![...]