December 11, 2008

Hello Again,

Gabriel's counts have recovered. YAY!! He will begin his other chemo tonight. He is in a relatively good mood. All the kids are in the Christmas mood. Addie wakes up every morning singing "Christmas, Christmas." The boys are learning the foxtrot with Steve and I (so cool).

Gabriel will have his last spinal on New Year's Eve for the remainder of this protocol. Yay!! It's AMAZING, he is almost done. Three years and 3 months of Chemotherapy he has completed so far. His anniversary was this past Monday.

Our Family is very Grateful, we are Truly blessed!

Hope everyone enjoys the videos below.

Angela

December 7, 2008

Hope thanksgiving was awesome!

Gabriel has recovered from his fevers, but his counts now need to recover. Gabriel is neutropenic with an ANC (absolute Neutrophil count) of 130. White Blood cell count of 1.3. He looked great on Wednesday. His doctors still gave him his VIN (chemo) and Dexamethasone (steroid I give him at him).

Thursday, Gabriel started becoming more cranky and he just wanted me to hold him. Steve and I switched off holding him. His appetite has decreased over the past couple days (cereal, peanut butter sandwich, nuggets,and tea), occasional vomiting, and he is a little pale. He does not have fever.

Today he is in better spirits. He's been putting together his puzzles (his favorite thing to do) and playing with his playmobil toys with Justin.

The steriod should at least give Gabriel's ANC a false high. We will see on Wednesday what his counts are and go from there.

Angela

November 25, 2008

Gabriel has been running a fever on and off over a week now. With his fever he's had a cough and congestion. Last week, for routine lab work, his ANC was 2000 with a white blood cell count of 3.8. I had a doctor look him over because of his cough and to help with inflammation he was prescribed a 5 day dose of azithromycian, an antibiotic.

Finishing his last dose last evening Gabe began running fever, with ear pain, this morning. I will be taking Gabe to the hospital today for labs, doctor check, (possible) chest X-ray and (possible) IV Antibiotics.

Gabriel has been active over the weekend and this week. His has been eating as well. Again, despite his ailments Gabe is still in good spirits.

Briefly, Gabriel was diagnosed with hereditary spherocytosis when diagnosed with Leukemia. Hereditary spherocytosis is genetic, when red blood cells are sphere-shaped rather than donut-shaped. However, we are unaware of any family member having this disease (disorder). With Gabriel still undergoing chemotherapy we have to wait until he is off treatment before the doctors can rerun test to be sure or assess treatment.

Gabriel will be off treatment March 15, 2008.

Thank you. Gabriel has a new video coming soon, so please check back.


Have a happy thanksgiving!


Angela

October 2008

Hello Everyone,

Gabriel is doing great! He's enjoying being four. He told me when he is six he won't have to go to the doctor anymore, he'll play baseball and he'll be bigger. Amazing his time line...he knows he'll be done soon.

Hope you enjoy his blog. Where anyone who hasn't known Gabe's story from the beginning can get filled in. I can make quick updates to keep everyone updated. And you'll see Gabriel's progression, learn about him and see him in action.

Angela

June 2008

Hello Everyone,

Thank you all for your continual care and prayers. Our family is enjoying the West coast. We are blessed Steven was able to stay home on a humanitarian reassignment instead of being deployed. He works in the mail room on base from 7am - 2pm and he can get off for most appointments. Which is awesome! I am also blessed to be able to work with an Integrative Medicine LPN at the hospital. I have always been interested in learning more about this aspect of care. We've been changing our lifestyle with better nutrition, household goods, supplements (researched on ALL patients), exercise, etc. (One of my favorite cookbooks is Deceptively Delicious) Working with Jeanine, I have been a sponge. She's started a program at Rady's Children's, I hope others begin. For instance, weekly Pilates, yoga, massage therapy, acupuncture, cooking classes, pony therapy (working on the grant), aromatherapy, classes for parents on nutrition and life after chemotherapy, etc for patients and their families.

Gabriel is doing GREAT! No hospitalizations in over a year now. He's growing in weight and height. He's made lots of progress in physical therapy, he goes to weekly. When we began, Gabriel could not ride a bike because his left foot is weaker than the right. This caused his left foot to drop while pedaling. He is also excessively flat footed. Now he rides his bike to the park. Our next goal is to get him to ride home too. He could only stand on one foot for 1-3 seconds; he is now up to 8-10 seconds. He walks up stairs without problem, whereas before he'd tire and lay on the steps crying. Physical Therapy has helped strengthen and build his endurance. I have even noticed a difference in how he tolerates the neuropathy.

With all his achievements (BLESSINGS!!) we continue to pray for his total healing. Recently Gabriel was diagnosed with arthritis, JRA. Gabriel has complained of leg pain since January 2006 due to his chemo. For the last year he's complained of pain with some inflammation in the knees. Recently, every morning he awoke with knee pain, swelling and warmth of the joint. This concerned me a lot. We watched him for a few weeks with Hem/Onc and Physical Therapist. I took him to see his rheumatologist three weeks ago. Our plan is to inject his knees with cortizol(or it may be cortisone). This will help with his pain and inflammation. Giving us a chance to strengthen his legs without the presence of pain. It is very important to me to do what a can to strengthen and (try to) offset the effects the chemo will have on him in the future. He now needs to see an Ophthalmologist every three months for standard exams to make sure he doesn't get arthritis in the eye. He'll also be seeing a neurologist next month. As his doctor told me, "You are covering all your bases." We will soon have seen every specialist there is…haha.

In previous emails I'd mentioned two concerns. First the rash Gabe had which would not go away. It was not eczema and dermatologist biopsy results were inconclusive. Basically I was told it was most likely a reaction to the chemotherapy, being that he needs the chemo we’d just have to monitor him to see if it got worst. Reading up on JRA, one symptom is a rash. Very interesting. His rash comes and goes, but with this information I am better able to watch the flares. Second the cough which is a nuisance. We still haven't figured out the cough, after exams I tell his doctors, "He still has the same cough," to keep it on his record. I am curious about concluding my concerns when he is off treatment (11 months from now). He will begin taking Milk Thistle and Fish oil supplement this month. Jeanine and I are looking forward to seeing his labs result next month before his procedure.

Prayer Request: God will restore Gabriel to health and heal his wounds. (We know Gabe has a Testimony to tell people when he is older.) God will continue to give us discernment concerning Gabriel's health.

Although this may seem like a laundry list of things going on with his, Gabriel has more blessings in his life than ailments. God is always with him. I have seen God working throughout everything he’s been through. I have attached a picture of Gabriel to this email. Looking at his picture does he look like all these things are going on? God deserves the Glory. Even his doctors tell me he looks great. Gabriel is blessed.


Justin is our leader. The nurses commented on how good an older brother he his. They tell me he acts as if he where years older than Gabriel rather than 15 months. He speaks up for Gabriel. “That hurts my brother. He doesn’t like it when you do that. Gabriel wants this or that…” Or he will encourage Gabriel to open his mouth for the exams, etc. Gabriel still will not talk to his doctors or nurses, he becomes like a baby goo goo gah gah is all he’ll say to them.


Adrielle is the boss. She is the youngest, but she runs her brothers. I am blessed they are gentle with her most of the time. She also speaks up for Gabriel at the hospital. She tells the nurses to stop when they access his port. When she sees me preparing meds she’ll yell,
“Gabe Medicine!”

Sorry for this length of this email. I have not written and update in three to four months. I pray all is well with you all. We are thankful for God's faithfulness, grace and mercy. He is the only way we’ve made it through the challenges in our lives.

Angela

January 2008

Hello Everyone,

It’s been a while since my last update. I apologize. We are still getting settled and getting things setup here.

Gabriel has been doing well and good. Over Christmas, as is he pattern, Gabe was neutropenic (having little to no immunities to fight infection). At first he had a low temp, which normally I wouldn’t take him to clinic for because he was border line. This time I was concerned and wanted to get him checked out. For some reason Gabe was hot enough to melt his Emla, cream but his temp stay the same. The nurses where concerned and thought it was odd his temp was higher. Any who, his counts where great that day, we got a round of antibiotics, held his chemo (stopped chemo until further evalution) and we went home.

Praise God she did that, because when we went back to the doctor to follow up, his ANC (absolute neutrophil count) dropped. One of his doctors told me, had his chemo not been held, his ANC would have been a lot lower and things would be worst. I pretty much decoded that to her saying, “your son would have had to be admitted for a higher fever and lower counts.” It was a blessing, but my heart was heavy. That day was the rehearsal for the church we’ve been attending Christmas Eve program. I wanted the children to be a part of it. The doctor felt bad and told me he could still go, I needed to have him wear a mask, etc.


That evening, I took him to the rehearsal. Seeing my boys singing away in a manger, he and Justin hitting each other with the stars they were suppose to hold. I was moved to tears. In that moment I saw was happy. What I saw was my son telling the church, “Look at how God has healed me, look at how God has been faithful to me, look at me, a miracle child.” I saw him telling his testimony. Oh the joy to see him testify to Gods goodness! I thought about how he was diagnosed around Christmas, but how God has kept him here. Give our family a gift we can share with everyone we meet. We can share: God will give us strength to make it through anything. Bring me back to the meaning of my son’s name, Gabriel – God is my strength, Nathan – gift of God.

Gabriel’s counts have recovered. I previous emails I’d mentioned the rash Gabriel has had since September. The dermatologists are unable to diagnose what the rash is. The rash on his face and buttocks is eczema. The bumps on the rest of his body leaves them questioning what’s going on. Given his chemo’s, the odd spots the bumps are located, the length of time they’ve been present, the results of the cultures taken from them and the meds they have given hasn’t helped – they have decided to do a biopsy of the bumps this week. Gabe will be starting physical therapy on Friday.

Gabriel dances around the house, his version of break dancing. (It’s cute) Gabriel and Adrielle fight each other now. Boy oh boy, I couldn’t believe it at first. They both have strong wills and love attention. Justin, always the leader, tries to keep them happy. He told me the other day, “Addie is supposed to listen to me!” It makes him mad when she tells him no. They are all doing great. I entered Adrielle and Gabriel into the Regis and Kelly most beautiful baby contest. Semi finalist will be called the week of the fourth of February. I hope to be in New York soon : )


Steven has had three underways since we’ve been here. He’ll leave again the end of next week for a few days. His underway schedule shows Steve being will be home about one week every month until May. In May he leaves for the Gulf until November or December. Our support system is growing much faster here. The military YMCA has given me respite care, they pay for someone to baby-sit, Justin and Addie while I am in the hospital. My cousin watches the children for me. That alone is Awesome!

We’ve found a church we will join soon. www.cvcf.com . If you have time listen to a sermon or two. When I’ve spoken to the Pastor Mike and his wife Pastor Theresa, I feel God’s spirit in them and I always get tears in my eyes. The children love their children’s ministry. Justin tells us he wants to go to church school. Last night after our small group, Justin had a Ziploc bag with water in it and a ball. I asked him what it was. He said, “The ball is Jesus. He went under the water and when He came up God said this is my son, I am pleased.” Gabriel told me this past Sunday, “God can do ANYTHING!”

We hope you all had a wonderful Christmas and Happy New Year. May God be with you always and may His peace, joy and love be found in you today.

October 2007

Good morning everyone!

We arrived in San Diego two days ago. I’m sure some wondered whether we were in the mist the recent fires in San Diego. We were neither in San Diego nor our home affected by the fires. While in route to San Diego my mother called informing me of the situation in San Diego. Her call preceded our EFMP housing coordinator, Nancy, who advised us to wait a week before coming to San Diego because the air quality was very bad. Steven and I decided to stop in route, in Arizona until things were better. We rented a cabin, went hiking, visited the Grand Canyon, explored the town and had some quality family time without distractions (TV< PHONE ETC).








I am very sorry I did not give an update to follow up on Gabe after he experienced Neutropenia. After two weeks of low counts, Gabe’s ANC jumped from 66 to 1666. Gabe continued his chemo the week of October 10 with his IVIG. The rash I mentioned in the last email had gotten worst and presently is still spreading. I noticed, after his last dose of Dexamethazone (steroid he takes once a month for five days); his rash had gotten a little better. Now the rash is seen all over his body including his scalp. In Michigan, the rash on the palm of his hands with low counts may have been a sign of a viral infection, with some eczema.

As of the week, his doctor in San Diego is concerned about the length of time the rash has been present and he is going to be looking into three other possibilities. First, Gabe is being taken off Dapsone, a daily antibiotic Gabe takes to prevent pneumonia which replaced Septra. He would like to see if Gabe has developed an allergy to the Dapsone. He is replacing this antibiotic with another, which will be given to him once per month in nebulizer form in the pulmanology clinic. Second, He has referred us to a dermatologist. Third, a possible unlikely, Gabe could be allergic 6MP, a chemo he takes by mouth daily.


All in all Gabe is doing great! His counts this week were good. While in Arizona we took Gabriel on a train ride to the Grand Canyon. He was thrilled, he loves Thomas the train and the tank engines. He tells us he rode on Thomas. We met a family on the train who live in San Diego. Last night they invited us to a Halloween safe night at a church. The kids played bible games like matching the animals two by two on Noah’s ark, throwing bean bags at Goliath, throwing bread in the five basic, finding the lost sheep, climbing Jacobs ladder…The children had lots of fun. We thank God we’ve met a Christian family, who’ve also given us insight on church, are both navy brats, Sarah works with children who have special needs from ages 3 – 5. They have two children who love kids, their oldest is in college and their son is ten.

We are waiting for our furniture to be moved in. Our prayer requests are Steve is able to contact his new command today. He has been having trouble with his command returning his phone calls. We learned after moving into to housing he had three days to report to his command to get our BAH transferred, cutting his leave by one week. Or we will have to pay $600 difference to housing if they are unable to allow him his leave time. Second we are having trouble with our insurance. There is a policy which states TriWest has the right to delay a person treatments to reevaluate the patients care. In exercising their “right,” the insurance company did not authorize Gabriel for his chemotherapy, labs or procedures. They gave him three office visits and did not find any error with refusing Gabe’s authorization Gabe’s new PCM requested. After contacting Gabe’s PCM and Pediatrics’ office manager, they have requested priority authorization again. Gabe is due for a procedure next week. At this point I really need God to intervene. Another funny story, our district housing office, after signing our lease and receiving keys told us they thought we broke into to one of their homes and were going to question us because they didn’t expect us to move in until November 9. We were scheduled to move in on October 22. I am being taught to have more patience.

Thank you for your prayers. I have attached a picture of the children at the Grand Canyon.

Angela

May 2007

Good Morning,

It’s been months since we’ve sent out an update. I became a little discouraged with writing his updates and emotionally, for a time, it became difficult for me to write them. Since Steven’s last email Gabriel has had no admissions to the hospital. His admission for fever, neutropenia and his third C-Diff, in February, concerned his doctors. With Gabriel being in Maintenance phase of chemotherapy he should not experience neutropenia as often as he did in prior phases of chemo. Therefore after he was neutropenic in February his doctors lowered his chemo dosage and gradually increased his dose back to his normal dosage of chemo in the months. They scheduled him for regular IVIG’s once per month because of the recurring C diff and to build his immunities from the chemo given to him. They also switched his antibiotic taken three days out of the week to a more tolerable antibiotic for small children taken everyday. Should he experience neutropenia again the doctors will do a bone marrow to insure his cancer is still in remission.



Gabriel has been doing great! Our latest concern was a cough with running nose he’s had on and off the last year. We’ve tried a few things, recently, the breathing treatments have helped him. His anesthesia nurse, yesterday, told me she’d remember Gabriel mostly for his cough and congestion during his procedures. In yesterday’s procedure she’d noticed a big difference in his lungs and she did not need to put the oxygen mask on him this time. Yay!!!

Gabriel’s G tube was taken out in April. He is maintaining his weight, his hair is beautiful. His doctors tell me often how great Gabriel looks, how beautiful his hair is and how much he has improved within the last six months. Gabriel can now run, climb, walk better and do things normal kids can do. Steven and I have moments, often, where we look at him or see him doing something he couldn’t do before and we just thank God. Gabriel has come a long way. His speech is advanced, one of his doctors told me.


Justin is a great leader. He wants to make sure his younger siblings have what they want. His social life is important. He makes friends wherever we go. And he says the cutest things like, “Daddy you my best friend.” Adrielle has been walking for the last month and she is the princess. The boys are at times a little rough but for the most part they give her what she wants. If she gets fussy Justin will find toys and books he thinks will calm her down. And if that doesn’t work he picks her up, brings her to me and says, “Mommy this is your baby.” Our children are a blessing to us.

Looking back over the last year I think, “Wow, how did we do this?” The only answer is with God. Your prayers have been important. God’s given us an extended family here of people we love and trust. Our move is quickly approaching. We are still unsure where we will be moving, but I trust God has gone before us and prepared the place He would have for us. We believe God for a new position for Steve in the navy. We will know something soon.

Thank you for all your prayers and support.

Angela

February 15, 2007

I apologize for the amount of time that has passed since the last update; I’ve been trying to take over the email writing for awhile to give Angela a break.

Most recently, this past Saturday we went to a picnic for my command which went well. Justin played with all the bigger kids, who developed the nickname SAM for him (Super Afro Man).
He mostly just chased them around, but he had fun. Gabriel was in good spirits too, repeatedly climbing up the jungle gym and going down the whirly slide. He was quite proud of himself, expressed in the statement he made after each run, “I did it, Daddy. I did it.”





Saturday evening however, Gabriel’s legs started shaking and he complained that his knees hurt. He wasn’t able to walk or even stand up. Because joint pain is common, we didn’t think anything else of it at that point. But later that night he woke up crying (which is also common because of the nightmares) but this time he had a fever of 102. It was about 2:00 am, so we reluctantly began waking up the other kids and packing a hospital bag. As we got him dressed we noticed his G-tube site was red, swollen and protruding and leaking puss and brown drainage.
We were admitted around 3am, and his ANC count was 38. They put him on antibiotics but his fever continued through the night. The doctors couldn’t figure out what caused this count to drop from 1100, which was his count three days prior. They did some other tests, including a chest X-ray. They didn’t find much, save that his sodium and potassium were low. He also received a blood transfusion because his hemoglobin dropped to 7.4.
Fortunately this time, Gabe’s monocytes were high, so his counts recovered much quicker than last time. His chemo, however, is on hold until his ANC reaches 1000. In the maintenance phase, rather than having to make up chemo, we are able to skip the doses that he isn’t able to receive due to low counts.
This March completes the first official year in his total of 3 years that make up the protocol. The doctors believe he’ll be able to start pre-preschool in the fall.
Right now Gabe has developed C-Diff from the antibiotics (again), and, due to its extremely contagious nature, requires we use gloves when changing him and bathe him frequently throughout the day.

Medical aside, Gabriel and Justin alternate interest between Justice League, Star Wars and Ninja Turtles. Most recently, Gabriel has taken to putting on the super man muscle-chest and cape while Justin has been trying to use the force to move objects. They like assigning different figures powers, which they describe to me in as vivid detail as their limited vocabulary allows, which includes ‘super strong, super fast, shoots eye lasers’ and ‘fly super fast’. Their favorite drama scene, currently, is to have one guy hanging from a cliff and another flying to the rescue. Justin’s favorite is still Spiderman, and Gabriel’s is still Batman and Superman.

Adrielle has been a terror on all fours. Besides getting into everything that isn’t 3 feet above the ground, she’s been frequently accused of taking food out of Gabriel’s hands or off Justin’s plate while they are sitting on the floor watching movies. She likes trying to play the toy piano in the boys room as well. She follows the boys wherever they go and devours anything in her path.

Well, that’s the most recent scoop. I hope to keep the updates flowing about twice a month. I hope the content was both informative and entertaining. We thank each of you for your continued support and prayer.

Steve

November 3, 2006

Hello everyone,

Quickly -- Gabriel spiked a fever and we are headed back to the hospital for the second time today. After getting home I took off Gabe's jacket, blood soaked his shirt. He got a second platelet transfusion today and his counts are continuing to go down. We expect to be in the hospital for at least a few days given his ANC is only 20. We have to rush him back, he has started to shiver...thanks for your prayers. I hope to update everyone soon.

Angela