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Sunday was treatment day 4. It was an important marker day in the treatment road map. Carol and I had been dreading this day. They would not use the port that they implanted into Gabriel's chest to administer his chemo (PEG) treatments, but two injections, one into each muscle in his thighs. As morning came, I gave Gabriel his oral meds to combat nauseasness, pneumonia, uric acids, and infection. He played a bit, cuddled with Carol and slept for a few hours. Maria and Mary returned to stay and play with Gabriel for a few hours so Carol and I could attend Joshua's First Holy Communion.

When we returned, the nurses were waiting to administer Gabriel's PEG injections. Gabriel laid on my shoulder in a Koala Bear hug and dosed off. As I got up and began to carry him down the hall to the procedure room, Gabriel picked his head up, looked at me and said "Where we going Dad?" A million answers ran through my head to fake him out, but as I looked into his eyes full of trust and innocence, I said, "You have to get a shot little buddy". His reply was simply "oh", and he put his head back down on my shoulder.

As we entered the procedure room, I could feel him hold on a bit tighter. I then whispered in his ear, "It's ok little buddy, you don't have to let go, I will sit on the table with you and you just hold on". As I sat down on the table, Gabriel's legs wrapped around my waist, two nurses positioned themselves, one on each side. They were going to do this simultaneously, and Gabriel's position made it ideal. No sooner did they count to three, and before Gabriel had a chance to figure out what had happened it was over. The nurses just praised him for how well he handled that, and he came out of there with not only two bandages on his legs, but a brand new Power Ranger rocket toy. :-)

The rest of the evening Gabriel spend laying next to mommy on the hospital bed, watching cartoons and sleeping.

I do not know how children and single moms and dads cope with situations like this when tragedy knocks at their door. There is an inherent balance that I have observed these many nights in this children's cancer wing  that is so necessary for these children, and that is for both a father and a mother. On the one hand, love radiated through strength and security from a father, and on the other hand, love radiated through compassion and gentleness from a mother. And it is not just Gabriel, I have observed this need in every child I have encountered these past 7 days. ( 3 pre-treatment days and 4 treatment days)

This evening, a little boy 2 1/2 years old, Gabriel's room mate, was diagnosed with Leukemia, just like Gabriel. Only, unlike Gabriel, only his mother is here with him. The little boy can hardly talk at that age, but during the day while he was feeling bad and gloomy, he snuggled up with mommy and was fine all day. Then, as if to demonstrate my earlier observations from Day 2, when the lights went out and midnight approached, the nurses came in to give him some meds following his chemo treatment and he cried out, daddy! daddy!  But there was no daddy there. Only a scared little boy and his mother who could not provide the strength and security that only a father could do in that situation no matter how hard she tried.

What happens to a society when men are absent? What happens to the children? Where have all the warrior fathers gone? Where are those white knights God created men to be? Where are these Soldiers of Christ?, these warriors for the Kingdom?, these protectors of the innocent? To use a military term, in most cases, they are AWOL (Absent With Out Leave). A violation of article 86 of the Uniform Code of Military Justice, punishable by death during wartime. But, I guess that is not politically correct is it..........

Good night,
-Tom

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Monday and Tuesday were good days for Gabriel. He spent most of his time resting and regaining his strength following the Day 4 treatments. We wandered out of the room and visited the play room for the first time. We played air hockey, video games, threw some pillow blocks around and Maria helped Gabriel assemble some puzzles.

All of us were very happy to see signs of the old Gabriel coming out of the medicated state he has been in for over 90% of our time here at All Children's Hospital. However, he tired quickly and after a brief visit in the family room, we went back to Gabriel's room and just let him rest.

Carol and I spent much of the remaining time reading and talking about this type of cancer and how we are to deal with it once we get Gabriel home. This has turned out to be a much bigger topic than we can process completely right now. We are scheduled to meet with a cancer patient/family prep person prior to Gabriel's release from the hospital to go over things we must do and not do, and what home life will look like once Gabriel comes home.

Please continue to pray for Gabriel and my family.

Good night...
Tom

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Well day 7 was a very good day. It kind of reminds me of the calm before the storm. Gabriel woke up full of energy. Talking about all kinds of things from his monster trucks, to coloring, to wanting to eat to telling me about his playstation game he likes to play and the really cool snow scene in one of the motocross tracks.

He went down for a CT scan with contrast so the doctor could get a better look at his liver, which along with his spleen has been enormously enlarged. He was so cute. Once we got down to the scan room, he looked at this big empty room with what appeared to be some sort of space ship in the middle. Almost like a big donut that sounded like a jet taking off. To help relax him a bit, I asked him if he wanted to stand on one side and I would stand on the other, and we could throw a football back and forth through the hole in the middle of his machine. He shook his head no and I proceeded to reach my hand through the hole in the CT machine to show him there was nothing to be afraid of.

The Tech's came in and wanted Gabriel to lay down on the table, which to my relief he did very willingly. They gave me a lead vest to wear so I could stay right next to the machine and hold Gabriel's hands over his head as he would be passed through the central opening.

The machine began to start and a whirling sound like that of a jet engine began to fill the room. As the table began to move Gabriel into the center of the machine, Gabriel looked up over his head at me, smiled and said, "This is cool." After a few passes back and forth, it was all over. Getting off the table you would have thought he was getting off a ride at Disney World. He thought that was the neatest thing.

During the CT scan process, I was talking to Gabriel about how much I like Sonic Coney Island hot dogs smothered with chili. I had forgotten he was being given these steroids that make him back to the room extremely hungry ALL the time. He went on to talk about how when we are finished, he wanted us to go and get some of these hotdogs.

Well when all was said and done and we were on our way up the elevator, Gabriel says, "Hey dad, we have to stop and get a hot dog before we go back to the room." So, off to the cafeteria it was, and we picked up 2 hot dogs, went to the family room and enjoyed our hotdogs. Well, Gabriel did, my was not a Sonic Coney Island hotdog smothered in chili, but I pretended it was.

After that we went back to the room to meet with the cancer patient/family prep person for a briefing on life after the diagnosis. I won't go into to much here but, suffice to say, many things at home need to change like, no going to school for the next 3 years, no organized sports, nobody can come over who is even slightly sick or around someone who is sick, hand washing for everyone who enters the home, kids come home from school and must change their close and shower. No kissing and hugging Gabriel by anyone outside the home. Depending on his ANC (immune system level) it will determine how much contact he can have with people and places outside the home and so on... Most of it is common sense if you are trying to limit germs and infection only the stakes are higher.

You know the calm before the storm I mentioned? Well day 8 brings with it a spinal tap, a bone marrow biopsy, a chemo treatment and if all is well, a discharge order so we can take him home after he wakes up.

Good morning
-Tom

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Thursday was everything I feared for my little boy. Scheduled was another spinal tap, bone marrow biopsy, chemo treatment and removal of his needle and tape that has been attached to his chest for more than a week. The one bright light in it all was the hope that if everything went well, and he handled the chemo and the anesthesia well, he would be able to go home at the end of the day. But it would be what felt like a marathon.

Most of day 8 was spent in anticipation of Gabriel's procedures that were to come. At 11am the doctor came in and marked Gabriel's back where he was going to go in for both the spinal tap, and the bone marrow biopsy. Over 2.5 hours went by before the time finally arrived for his procedures. First the nurse did what they call a "push" and administered the chemo into his port in his chest. Then at 1:30pm, the doctor was ready and the nurses asked if I would bring Gabriel to the procedure room. As I carried Gabriel out of the room and down the hall, he said to me "Dad, where we going?" I said, "Do you remember that little room where you got those shots and the nurses gave you the Power Ranger toy?" Gabriel said "Yes." I said, "Well, the doctor needs to check your back again before we go home to make sure that everything is OK." "But I don't want to!" Gabriel said as his voice trembled. Once again I assured him that I would be with him the entire time and that everything would be fine.

As we got to the procedure room, the nurses were there and greeted Gabriel and allowed me to hold him while they set up is IV with the drugs needed for the procedures along with a mild sedative that would render him still and sleepy but not completely un-conscience. As I laid him down on the table, to nurses once again asked me to hold his head down so is chin touched his chest while he laid on his left side with his back toward the doctor. Once in position I placed my right hand on the top of his head to hold him securely, I bent over and placed my forehead onto his, and with my left hand I held his right hand so he would know I was with him.

As the procedure began he made a few grunting noises and then he piped up and said "That hurts!" but then quickly quieted down and began to talk to me about going home. I was surprised that he could carry on a quiet conversation with me all the time the doctor was poking and digging into his spine. After about 10 minutes I heard the doctor say he was done. But I wasn't the only one who heard him. Gabriel piped up, "We're done? I can go home now?" "Not just yet." I told him, "But soon."

As we went back to the room, Gabriel asked me, "Dad, why do we have to do that?" I replied, "So that we can make you better." His reply was a simple "oh." It was as if he completely understood what was going on and my answer was good enough for him.

As I took him back to the room and laid him down on the bed, he looked up at the TV, started laughing and said, "Dad, look, Mr. Crab is mad a Sponge Bob. He's gonna fall down." With that he laughed and began narrating the cartoon to Carol and I what was happening. As the next few hours passed, the sedatives began to wear off and Gabriel got tired and went to sleep for awhile. Then about 10 minutes to 5pm, the head nurse came in, turned her back to me, washed her hands, then turned around and bent over as if something was wrong. I asked if she was OK, and she told me, "Yes, I just hate this part, I care for these little children the entire time they are here, and create a relationship with them. Then after they finally trust me not to hurt them, I have to be the one to take out the port-needle and remove week old tape from his little chest and it hurts like hell and he is going to hate me. The last thing he is going to remember about me is the pain I had to put him through his last minutes in the hospital."

With that a male nurse came in to help and I knew things were not going to be easy. I went over to Gabriel and sat on his right side and the nurse sat next to me a bit farther down on the bed. The male nurse took position on Gabriel's left side. The nurse began to explain to Gabriel she had to remove the tape from his chest and take the needle out that was in there, but Gabriel would not hear of it. He was going to take it all home with him, he was not about to let anyone tear that tape off his chest.

Well, we all know what happened from here, once it was obvious Gabriel was not going to cooperate any further, the nurse began to rub some tape remover on the outside of the tape and started to lift off one small section that held the tube fast in place. 10 seconds later the tape was off the tube and it didn't appear to be so bad. Gabriel was not quite so resistant, but that was about to change.

As the nurse moved to the larger tape that covered his chest port, Gabriel got more scared and resistant. I grabbed his hands to stop him from fighting and the male nurse had to hold down his legs. He tried everything he could to get the nurse to stop, and when he saw he could not do it physically, he began crying out, "Daddy help me!" All I could do was keep telling him it would be OK and as soon as this was off, we were going home, but it didn't help him or I. Once again I had to place my fatherly warrior heart in check, and follow what my intellect was telling me. This was necessary and as much as I hated it, and as much as it hurt me down to my soul, Gabriel was going to have to go through it, and there was nothing I could do but be part of it.

Finally, the last piece of tape came off and the needle was removed and Gabriel yelled "I Want Mommy!" and with that, Carol moved in and sat next to him and held him as the two nurses and myself faded back a few feet away from his bed to give him the comfort he was looking for from Mommy now that it was all over.

I looked at the nurse and I swore she wanted her mommy as well. I almost think it was more traumatic for that nurse to have to remove that chest port needle and tape, than it was for either Gabriel or Carol and I. She new this would be her last impression on this little guy before he left, and it physically tormented her.

After about 20 minutes went buy, Gabriel knew he was going home, the nurse came back in and talked to Gabriel. She asked him if he would forgive her but Gabriel just hook his head no. She reached out and asked him if he would give her "5", but again he shook his head no. She knew it would take some time for Gabriel to get past this, but time was one thing she did not have. We were about to leave, and this was her goodbye.

As we got our stuff together, I went over to her, put my arms around her, squeezed her tight and said, "Thank you for all you did, and are going to do in the future to save my little boy. And I promise to bring him back to see you in the coming weeks in brighter circumstances so that this is not the last thing he remembers about you." With that she gave me a big hug back and thanked me. Carol too then hugged her and thanked her for all she did over the past 10 days.

At Gabriel's age, and, if I may say, at any age, it is hard to understand that it is only through suffering, that we can gain happiness, whether it be in an eternal sense or in his case, just getting better in health. In Gabriel's case, there was much pain that had to be endured if he was going to be able to go home, but it was necessary for his own good even if he did not understand it at the time. But as time moves forward, he will come to see that the mountain that lies ahead, can only be conquered through much pain and suffering for all of us involved.

It is a lesson Christ tried to teach us when he walked this earth over 2000 years ago and continues to teach us in the pages of Sacred Scripture as well as the pages of life. "If we suffer, we shall also reign with him..." (2Tim2:!2)

We did get to go home, and once we started down the hall, Gabriel was just as cute as could be. His energy level began to take on a new high. His joyful personality began to peek out, and once we stepped outside, he was all Mr. independent. Walking by himself, wanting to race me down the sidewalk and, oh yeah, take him for a ride on the go cart once we got home.

Now it is time to begin our new life and make all the adjustments we must to secure Gabriel's survival and minimize any undo risk to him. It won't be easy with the size of my family, but if good is going to come of this, it will require sacrifice on many levels from all of us.

For many at the hospital, our going home was the conclusion to a very long 10 days. For Carol, Gabriel and I, it is only the beginning of many more trials and sleepless nights that lie ahead.

We return to All Children's Hospital Monday (May 14th) and then again Thursday (May 17th) and so begins the next 2.5 years of treatments for Gabriel. Pray for him and all of us.

Good night...
Tom

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Today was a blood and med day. Gabriel experienced a finger prick for the first time and for the life of him could not understand why he was being made to bleed from his little finger. It is all so traumatic for him and he just does not want anything to do with any of this.

The doctor came in and spoke with us about his results from the day 8 bone marrow biopsy. At first she was very excited and said that Gabriel was responding phenomenally. His leukemia blood cell count from the bone marrow was down to 1%. This is fabulous! This would mean that he would no longer need a bone marrow biopsy until treatment day 29.

Initially the doctors were very impressed by these lab results, but after a few moments in the hall in an informal consultation among themselves, one of the doctors came back and said that these lab results are so phenomenal that they believe the lab might have made a mistake. So just to be sure, they are going to do a bone marrow biopsy on treatment day 15.

Did the lab make a mistake, or is the power of prayer what is really going on?  With that, we packed up and made the 75 minute journey back home.

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Day 15

Today, Thursday,  we expected a very long day. Scheduled was a transfusion of blood platelets, a chemo treatment and a bone marrow biopsy. The process began by Gabriel weighing in and having his vitals taken. All systems go at this point. Once in the treatment room, we met with the doctor and discussed Gabriel's blood and vital readings. Everything looked good except his platelet level was hovering around 10. ( below 20 requires platelets to be given through his chest port for about 1 hour). The nurse then came in and inserted the tubing into Gabriel's chest port and taped everything in place. (Gabriel hates having the tape pulled off his skin. It is probably the most traumatic part of it all for him). Then she removed his shirt and prepped his back area where they would go in for the bone marrow biopsy.

A few moments later the nurse came in and informed us that they needed to order blood platelets and there was not enough time in the day left to do that. They would do the chemo treatment today but we would need to come back in the morning for the blood platelets and the bone marrow biopsy.

So Gabriel received his chemo treatment as scheduled, but tomorrow would bring the next chapter in this process. He was extremely upset when it came time to remove all the tape. Well you can imagine what that was like. If you have ever tried to pull a band-aid off a child's skin, you know how well that goes. Only these band-aids are 4inches square with no pad in the middle, only tape.

Well the day ended and we journeyed back home and Gabriel went to asleep, which is what he did the rest of the evening.

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Day 16

Thank God it is Friday. Today we returned for Gabriel's blood platelet transfusion, more blood tests and a bone marrow biopsy. Everything is beginning to get routine as far as the hospital procedures are concerned. Once through the vitals and weighing process, we went to the treatment room where the nurse once again connected the tubing up to Gabriel's chest port and taped everything in place. Yes it was as traumatic as the day before for all of us. Gabriel is getting to really hate this tape business. Anyway, everything was going well, the platelets slowly dripped through the IV machine and into his chest port which lasted about 1 hour. We then prepared Gabriel for the bone marrow biopsy. I really hate this part because it is Dad here who must restrain him until they administer the sedative that is supposed to make him sleepy and not feel anything.

Well the sedative was administered and I laid him down on his belly on the table. As I hovered over him with my left arm around him and my face down next to his, he began talking to me about getting a cheese pizza, his dog that was hit by a car and died and a host of other items on his mind. As the doctor was preparing to begin, I said, "I don't think he is ready for this, he is carrying on some intelligent conversation over here".

The nurse then listened to him and then added a bit more sedative to his chest port, but that would not be enough. As they began, Gabriel let out a screen that curled my hair and began crying harder than I ever heard him cry before. I tried to comfort him but that was not going to happen. After a few minutes the procedure was over and Gabriel slowly calmed down saying how much that hurt.

I turned to the doctor and told her that of the past 3 bone marrow biopsies, this one was the absolute worst for Gabriel. He is normally very sleepy and sedated and barely makes a sound and he never cried. She made a note on his chart and said that he is probably building up an immunity to the sedation medicine and they would need to try something different next time.

So we await the results of this biopsy to see if in fact the lab made a mistake by figuring his leukemia in the bone marrow at less than 1% or it proves that Gabriel really is responding phenomenally as the doctors first indicated. Either way I know that God is listening to the many prayers that all of you have offered, and joined with those of my family, we will continue to move forward and trust in Him. For it is through prayer that we are strengthened to fight the battle here on the battlefield of life.

Bone marrow results will come in the Day 19 update.

Thank you for all your prayers and support,
Tom

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Day 20

On day 15 we were told Gabriel's lab results came back and the results were so phenomenal that the lab may have made a mistake. 1% leukemia cells in the bone marrow was almost unbelievable for only 8 days of treatment, the goal is to get him into remission by day 29, and under 5% is considered remission.. So a 2nd bone marrow biopsy was done. Today Oncology called (10:30am Tuesday May 22, 2007) to tell us, the first test was actually correct. The 2nd bone marrow biopsy came back with 1.5% leukemia cells in the marrow. A deeper test into these results showed NO leukemia cells active anywhere.

His 3 years of treatment will go on, but the prognosis is very good. Alleluia!

Thank you for all your prayers and support,
Tom

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Day 29

Today is a big marker day. Treatment day 29 concludes Gabriel's Induction Treatment series. The visit began as usual, we checked into the clinic, Gabriel had his height and weight taken along with his blood pressure and temperature. To our shock, he has gained 2.5 pounds this past week alone. Thank God the steroids came to an end last night.

Well Gabriel had a spinal tap and a bone marrow biopsy done, and this time the doctor was sure to increase the sleepy juice so Gabriel was much more sedated this time and went through the procedure very well. Now it is another waiting game to see what the results are from this bone marrow biopsy. These results will determine his course of treatment (combination of drugs) for the next 3.4 years. 

We continue to pray for a fabulous outcome. Recently I discovered that Gabriel's name means "Fortitudo Dei", The Strength of God. How appropriate for this little warrior who's angel always looks upon the face of the Father. (Matt. 18:10 “See that you do not despise one of these little ones, for I say to you that their angels in heaven always look upon the face of my heavenly Father.)

Thank you for all your prayers and support,
Tom

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Day 32

Well the two weeks we had at home were great but, too good to last. At 3am this morning, (Sunday) Gabriel began to run a fever. It hovered around 101 for about an hour then dropped to 96. However, by 3pm he was spiking a 104.2 fever.

Wednesday was the last round of steroids for Gabriel for a while and he began to come out of his dazed state that he had been in for the past 30 days since his diagnosis with Leukemia. He appeared to be getting some energy back and as the next few days went by, he began talking more and more.

Today, most of the day everything seemed good. He started laughing again and joking with me. Telling me some of the storyline while watching the cartoon Sponge Bob Square Pants. I started seeing the old Gabriel I remembered from a month ago starting to emerge. Later in the morning we walked around the yard looking for some rabbits in an effort to get him to walk a bit so he could begin gaining some strength back after being in bed for almost a month.

After a stroll around the back yard, he quickly got tired and went and laid down. About 1pm we noticed he was sweating and had a temperature of 100.5. By 3pm his temperature was spiking at 104.2.

After speaking to his cancer doctor, she had us bring him back to All Children's Hospital and admitted him at 7pm this evening (Sunday). At first he was admitted to the 2nd floor cancer wing, but he was quickly diagnosed with the very painful virus called Shingles. We were then quickly moved to the 4th floor special disease control wing.

So I am back in that room recliner I talked about before, and Carol is cuddled up with Gabriel on his bed. We are looking at a 10 to 14 day stay in a pressure controlled room complete with an airlock entry door like an old Navy Submarine.

I am not sure what God has in mind with all of this, but as I said in my day 3 updates, we can only trust in God's divine wisdom and Fatherhood. I will continue to keep you all updated with all the latest information as the next two weeks slowly pass, one hour at a time. Pray for us. Jesus I Trust in Thee.

Good night...

--Tom
"Whenever my enemy provokes me to combat, I try to behave like a soldier."
St. Therese, the Little Flower

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Day 34

In the midst of the trials Gabriel is currently going through, there is some very good news... Gabriel's bone marrow biopsy from Day 29 came back with 0% Leukemia cells. This is excellent news. It basically means they have achieved remission in under 30 days. We are now awaiting the results of a MRD (Minimal Residual Disease) test which is basically a high powered microscope that can see things deeper in the bone marrow than the normal lab can.

The current results also placed Gabriel in a Low Risk category. This means his treatment and amount of drugs will not need to be as severe as the standard or high risk categories. They continue to dial in tighter on Gabriel's specific type of Leukemia. His long term treatment is becoming more clearly defined with his current schedule of treatment set to last for 3.4 years.

Gabriel's cancer treatments have also been suspended until he completes his current battle with Shingles. Currently the Shingles are located in the small of his back and progress along the nerve track leading down his right side and down his right leg. Doctors hope the medications will stop it from spreading to the rest of his body and therefore reducing the pain he feels due to the amount of surface area effected.

He is still struggling with fever but his pain level is low and he is handling it very well. Thank you again for all your prayers and support.

--Tom
"Whenever my enemy provokes me to combat, I try to behave like a soldier."
St. Therese, the Little Flower

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Day 36

Great news all. Doctor was in this morning and is releasing Gabriel to go home today. Once again he has responded very quickly to treatment and is in good spirits. The doctors also decided to suspend his chemo until next week to give him a chance to get past this episode. 

We also received the results from the MRD (minimum residual disease) test on his bone marrow and it came back with 0% leukemia cells as well. All is very good news. This now completes the Induction Phase of Gabriel's treatments. Once Gabriel finishes his recovery from Shingles, he will begin the Consolidation Phase of his treatment.

Thank you again for all your prayers and support.

--Tom
"Whenever my enemy provokes me to combat, I try to behave like a soldier."
St. Therese, the Little Flower

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