Journal

Help Hanna Heal

Helping our family heal from the loss of our little angel.

Hanna's Journal
This is a portrait taken of Hanna at 2 1/2 yrs old. (Just one week before she was diagnosed with Cancer)

July 1, 2006

Final thoughts from her Father,

It’s hard to know just what or how to say, what’s in your heart, at a time like this. Often times,… friends and family express the same loss for words when trying to comfort us. I don’t know that anyone truly needs to say anything so profound or special. Often times, it’s their actions that speak so much louder than their words need to be.

You see since the start of our battle with this terrible disease, friends from all over the country have shared in our pain and suffering. They have shared in our joyful successes and they have mourned at our sorrowful defeats. But they have been there none-the-less to share their words of love, support and strength. Over 5,000 visits to Hanna’s website and over 800 thoughts and prayers were posted during her 6 month battle with cancer. All of which have helped us to keep the strength and faith which has carried us through the days. Friends we saw everyday at work and around town;….. friends from places we’ve lived and friends from years gone past;…… friends we’ve lost touch with and friends we’ve never even met. And yet all of these friends have come together to share in a common goal. To express to Hanna and to our family that their thoughts and prayers; their love and strength; and their support and energy was with us at our time of need. You see no matter how close or distance those friends have been, and even when most have never even met Hanna personally, they were touched by her story. They followed our journey through the updates we posted and they were touched by how strong and courageous she was. They felt so moved by the strength in her, that they wanted to tell us just how much they cared. How can you put to words the power that those actions hold? And yet I’m sitting here trying to do just that.

What can I say about Hanna, that for those of you who didn’t get to know her, can take with you today? Hanna was a beautiful child. She was the kind of child whose strong spirit drove her “love for life”…. She had the type of energy that seemed to warm your heart the second she walked into the room….. 3 years seems like such a short time to develop a sense of spirit that was so recognizable, but for Hanna, it certainly was not. Those who knew her could tell you that she had left an impression on them that would last a lifetime. Each in their own way Hanna has touched so many people and has given them memories they will carry forever.

Amy and I carry many memories ourselves. Too many to count and too many list, and yet in this time of reflection we think about how we hope and plan to carry these memories through all the years of our lives. We hope that these memories will remain just as detailed in fifty years as they do today. Some are nostalgic memories like…. watching her open her eyes for the first time;… rolling over for the first time;… taking her first steps;… saying her first words;………… saying I love you and giving you a big hug and kiss. We have so many memories….. like picking dandelions and catching caterpillars;…like reading books, singing songs, and riding slides and swings at the park. … like playing hide n go seek with her sister and forgetting that she locked her in the front hallway closet. …..like helping mommy cook chocolate chip pancakes on a Sunday morning and quickly loosing interest due to the newfound supply of chocolate in her possession. How she loved to help mommy…… pushing her little vacuum around the house;…. helping to put away her toys when it was time to clean up;…… helping to wash off her sister’s hair with a cup of water when it was bath time;….. and most of all, in the morning when she would first wake up, how you could hear her little feet running down the hall and swing open the door to wake you up, only to find that she brought with her a change of clothes, a new diaper w/ wipes and even the Diaper Geni itself……..

Oh Hanna will truly be missed…. but she will never be forgotten for these are just some of the memories that we will cherish our entire life.

I have often referred to the day of her passing as a day an angel was born. Hanna was our little angel for sure, but it is clear to me now, that she must also be Gods little angel as well. I think her ability to have touched so many people in such a positive way speaks to the strength of her spirit. A spirit,… I guess…, that has already proved itself to him. For she did not need to wait any further or do anything different to prove herself worthy of His grace. The pain of her leaving us is something we will carry forever, but the faith we have that she is in a better place and is now watching over us, will help us carry on. For some day we will all be together again, and that day will truly be the best day of our lives………

Hanna we love you….we miss you…. BYE

6/18/2006

Obituary, Arrangements and Services

Hanna Jane Paribello of West Chester, OH died peacefully at Cincinnati Children’s Hospital in Cincinnati, OH on Sunday, June 18, 2006 while in the arms of her loving parents.

She leaves her parents, Michael J. and Amy (Ross) Paribello; her sister Loryn Ann Paribello; her maternal grandparents Robert Thomas Jr. and Jane (Friberg) Ross of Wilbraham, MA; her paternal grandfather Papa Jack Paribello of New Milford, CT; her maternal great-grandmothers Ethel (Johnson) Friberg of Hubbardston, MA and Viola (Greeley) Ross of Hudson, MA; aunts, uncles, cousins; and her cherished friends.

Hanna was a beautiful child whose spirit had a way of touching everyone she met. She was very proud of her role as a big sister and enjoyed the simple things in life like picking dandelions, holding caterpillars, reading books and making pancakes. She also enjoyed arts and crafts, swings and slides and playing with her neighborhood friends. Her parents will never forget her smiles, her hugs and kisses, her spirit and strength and her unconditional love.

A Celebration of Hanna’s life will be held at 11 a.m. on Thursday, June 22, 2006, at Miles Funeral Home, 1158 Main Street (Rte. 122A), Holden, MA. Burial will follow at the Rural Glen Cemetery in Hubbardston, MA. Calling hours are from 5pm to 8 p.m. on Wednesday, June 21st. (Directions are listed below)

For your convenience, recommended florists are listed below. However, in lieu of flowers, memorial donations may be made to the NANT consortium (New Approaches to Neuroblastoma Therapy), to help further research and development of better cures for this cancer.

Donations:

The NANT Consortium,
Attn: Terry Green
Children’s Hospital Los Angeles
4650 Sunset Blvd #29
Los Angeles, CA 90027

(On the Memo Line of your check list: "Hanna Paribello" to ensure that donations are made in her memory)

Florists:

Lynn Hartman
Hartman’s Herb Farm
1026 Old Dana Rd.
Barre, MA
978-355-2015
Weekdays 10am-5pm

Earle A. Johnson
211 Doyle Rd.
Holden, MA
508-853-2933
Weekdays 7am- 5pm

Services:

Miles Funeral Home
1158 Main Street
Holden, Massachusetts 01520
(508) 829-4434
(800) 983-4434

DIRECTIONS TO FUNERAL HOME:

FROM BOSTON, MA
Mass Pike West to Route 495 North (Exit 11A towards Marlborough), to Route 290 West (Exit 25B towards Worcester), to Route 190 North (Exit 19 towards Fitchburg), ...CONTINUE: On Route 190 North take Exit 2 (Ararat Street). At set of lights go straight, bearing right at the fork. Turn left at next set of lights onto Mountain Street West. Climb hill and straight through two sets of lights, then turn left at lights onto Shrewsbury Street. Straight through next set of lights, then turn right at next lights onto Route 122A North (Main Street). Miles Funeral Home is located two miles on the right (1158 Main Street) - prior to the junction of Routes 122A and 31.

FROM SPRINGFIELD, MA
Mass Pike East to Route 290 East (Exit 10), to Route 190 North (Exit 19 towards Fitchburg, ...CONTINUE: On Route 190 North take Exit 2 (Ararat Street). At set of lights go straight, bearing right at the fork. Turn left at next set of lights onto Mountain Street West. Climb hill and straight through two sets of lights, then turn left at lights onto Shrewsbury Street. Straight through next set of lights, then turn right at next lights onto Route 122A North (Main Street). Miles Funeral Home is located two miles on the right (1158 Main Street) - prior to the junction of Routes 122A and 31.

FROM HARTFORD, CT
I-84E, to I-90 E to Route 290 East (Exit 10), to Route 190-N (Exit 19), ...CONTINUE: On Route 190 North take Exit 2 (Ararat Street). At set of lights go straight, bearing right at the fork. Turn left at next set of lights onto Mountain Street West. Climb hill and straight through two sets of lights, then turn left at lights onto Shrewsbury Street. Straight through next set of lights, then turn right at next lights onto Route 122A North (Main Street). Miles Funeral Home is located two miles on the right (1158 Main Street) - prior to the junction of Routes 122A and 31.

DIRECTIONS TO CEMETERY:

From Miles Funeral Home, start out going NORTHWEST on MA-122A / MAIN ST toward HIGHLAND ST / MA-31 for approximately 2 miles. Turn SLIGHT RIGHT onto MA-RTE 68 / BROAD ST. Continue to follow MA-RTE 68 for approximately 9 miles. Rural Glen Cemetery will be on your left approximately 1/3 mile past the junction of Rte 68 and Rte 62.

6/18/2006

Today an Angel was born.
At 7:35 this morning Hanna Jane Paribello passed away.
We will post additional information once arrangements have been made.

6/10/2006

Still Hanging On

We just wanted to send you all a quick note to let you know that Hanna is still hanging on.
As you can imagine we’re not quite in the mood to write a lot, but felt compelled to keep everyone in tune with her condition.

The past two weeks have been quite trying as you can imagine. Hanna’s had some good days and yet some bad days. After surgery we opted to move her from the ICU back to the Oncology floor. In fact, we were fortunate to have moved back to the same room we’ve spent most of our time in, these past 6 months. It’s the closest to home she’s had since we’ve started this battle.

Most of these last two weeks have been spent managing her comfort and spending time with family. There seems to be a fine line between keeping the proper pain control and minimizing agitation, so the Dr’s continue to adjust her med’s as needed. Amy and I have moved into the Hospital to spend as much of these last days as we can with her. Family and friends are taking turns coming to visit, often times Hanna doesn’t want much to do with anyone besides Amy and I, but their support for us and love for her is evident with every visit.

We can’t tell you all how grateful we are for the love, support, thoughts and prayers that everyone has sent us in these last two weeks. Amy and I read every one of them, often multiple times, and wish so much that we could talk to each of you in person to tell you just how much your words have meant to us.

Despite her continued decline, Hanna’s spirit remains strong as it’s evident that she’s not ready to leave us quite yet.

5/30/2006

IN GOD’S HANDS NOW…..

So we struggled for hours thinking of just what we could say to help you all understand the emotional roller coaster ride we’ve all experienced this past week. Just when we’ve thought we’ve seen the light at the end of the tunnel we’ve soon realized that the light must have been something very different. While it was obvious from my last posting that Hanna has had a very successful surgery, the results we’ve received in these last few days have left us with no further options to treat this disease. Hanna’s has but a few days left with us and what’s important now is that we spend this time with family, comforting and caring for her until she passes.

As you can imagine, it’s hard for us to call everyone we know to explain exactly what’s transpired in this last week. But we feel compelled to inform all of you, who’ve cared for Hanna’s well being thus far, to understand the nature of the new findings and the reason for the circumstances we are faced with today.

The shocking news started on Tuesday when we received the results from the post operative MRI and CT scan. Basically it showed some new growth in her head, a small spot in her left temporal lobe. This news completely changed the treatment plans from that point forward. You see in order for Hanna to be ready for “Consolidation” the cancer in her system needed to be virtually gone. Now that she is still showing signs of increased cancer in her system the Dr’s were forced to proceed down a new path. It’s very concerning to see new growth after we’ve seen so much progress thus far.

So the plan was to start Hanna on another one to two rounds of chemo in order to continue to treat the cancer. She was able to go home for 1 day this week, but on Thursday she was readmitted to the hospital to start this next round. Once the chemo treatments were complete the plan would then have been to undergo MIBG “treatment”. You may have heard us talk about MIBG “testing” in the past, when a radioactive isotope is injected into her system. The isotope is then absorbed by the cancer cells and then a machine takes a scan similar to an MRI to view the amount of cancer cells that light up with the absorbed isotope. MIBG “treatment” is sort of like internal radiation. The similar isotope is injected into her system but at a higher, more radioactive, dose. Since the cancer cells absorb the isotope, the cancer cells get radiated.

Well on Saturday things changed yet again. You see in the morning we saw Hanna experience some seizures in her right arm. Something we hadn’t seen since she was first diagnosed. This caused the Dr’s to order another CT scan of her head which shocked us yet again. What they saw was additional tumor activity in her brain. Larger areas had formed within the last 4 days, in the same areas where her original lesions were. That evening the chief radiologist came to visit, to review the scans and to discuss the next steps in Hanna’s treatment. It wasn’t quite clear if this was entirely new tumor growth or mostly blood. But regardless, this new growth was causing additional pressure on her brain that required them to change her course of treatment yet again.

So the decision was made on Sunday morning to start radiation treatment within the next two days. The process would have been 10 cycles of direct radiation treatments over the course of the next two weeks. It was the hope that this direct radiation would attack the tumors in her head and prevent them from further growth and bleeding. This was a course of therapy that Hanna would have likely had at some point, but given the current situation, the decision was made to post pone the MIBG treatment and go directly to the direct radiation therapy.

Unfortunately we never got that far. That afternoon Hanna’s seizures grew more often and longer. And, at times, she experienced irregular breathing and lethargy which resulted in her relocation to the ICU for closer evaluation. Shortly after getting to the ICU she was sent down for another CT scan. The results showed additional growth and a mid-line shift in her brain by 3mm, all of this in just 24 hours. Suddenly we were faced with the harsh reality that this disease was simply out of control. At 6pm that evening we meet with the chief of neurosurgery to discuss the next options. Since the pressure was so increased to be causing mid line shift it was only a matter of time before we started to see more serious signs of neurological problems. Radiation was not an immediate option because while it would be the most appropriate measure of fighting the cancer, the major issue at hand was addressing the pressure. And since radiation causes some brain swelling, it would be best to wait until things were more under control. So the remaining option was to have Hanna undergo neurosurgery to try and remove whatever tumors and blood from her brain they could. So at 8pm Sunday evening Hanna entered the OR for the longest and most gut wrenching 3 hrs of our life. Finally we received word at 11 pm that she made it through the surgery and was in recovery.

The Dr’s had explained to us that the growth in her head was quite extensive and confirmed that the new growth it indeed new tumor growth. He was able to remove nearly the entire tumor in her lower temporal lobe. However, the tumors in the upper areas of her brain where more difficult to treat. They had spread through the dura and the bone and had even spread to more delicate areas of the brain. So his ability to remove much in these areas was minimal. Hanna recovered that evening in the ICU. She was conscience at times and her pain seemed to be under control.

It was now Monday morning when we were faced with the news that our journey was coming to an end. Hanna went down for another CT scan, intended to check the post surgical progress. The results indicated that two entirely new tumors had growth in the last 12 hours. With that news our options for additional treatment had run out. The shear aggressiveness of the disease has moved us past any known ability to help or cure Hanna any further.

As difficult as you can imagine it must be for me to write this entry. And furthermore, to be as detailed as I was should only show you all how much we’ve cared about your interest in our daughters well being. This website was a testament to faith and love, and it served as a portal for communication between friends and family. For the time being we will leave the website active in memory of Hanna and to serve as a continued message board for those of you who will continue to share your thoughts and prayers with us.

As hard as it is to comprehend how the loss of a child makes any sense in this world, we know that whatever the reason, her spirit will continue on with us forever. She’ll be with us always, in our hearts and, in our thoughts and prays. At this point we’re faced with the reality that Hanna is in Gods hands now and that he clearly has a higher purpose for taking her from us, perhaps there is a shortage of Angles in Heaven, but whenever the reason, we know she’ll be in good hands.

5/18/2006

Successful Surgery

We just wanted to give everyone an update on Hanna’s surgery. In short, it was a success!!

Last night Hanna was admitted to the Hospital in order to get ready for her procedure today. Her blood count was a little low so they wanted to give her a transfusion and work on getting her hydrated. This morning we were brought down to the OR when everything got underway at 9am. The total procedure took about 4 hours, due to everything she needed done. At first they removed the primary tumor from above her left kidney. Dr. Falcone did the procedure and said that everything went very well. He said that he was able to remove the entire tumor without any issues. We got a chance to see a picture of the little bugger, which shrunk back to about 2” in diameter, and thankfully it’s out of her body once and for all.

After the tumor was removed Dr. Falcone was able to repair her hernia and clean up some extra scar tissue around her incision. They also replaced her central line. The old line was a larger line used primarily for the stem cell harvest back a few months ago. Now that she no longer needed the larger line it was the perfect time to replace it with a smaller one. Finally, she had a bone marrow biopsy which was required prior to starting transplantation as part of another round of testing to determine staging. To limit the number of sedations in Hanna’s future, we pushed the Dr’s to schedule this procedure at the time of the surgery since she was going to be under anesthesia already.

We expect to be in the hospital for about a week. Hopefully we’ll get a chance to go home before Memorial Day weekend, but that just depends on when they plan to schedule the next round of testing. After Hanna fully recovers from surgery she’ll go on to the next phase therapy, “Consolidation”. During this phase she will undergo round of high dose chemo, the stem cell transplantation and then some radiation treatments.

So I guess that’s it for now. Hanna’s doing fine, just trying to get a lot of rest. Thanks for all your thoughts and prayers this week, they truly helped.

5/14/06

Happy Birthday Hanna

Not only is today Mother’s Day, but it’s also Hanna’s 3rd Birthday. As you all know we started Hanna’s Birthday celebration about 2 weeks ago when we received the wonderful news about her progress thus far. Since then, Hanna’s been home enjoying her time away from the hospital and the doctors. Loryn’s been in bliss the last couple weeks, following her big sister everywhere. Of course they wouldn’t be sisters if they didn’t fight over every little thing.

Hanna started her vacation having a chance to visit with her Auntie Donna, Uncle Dave, and cousins, Brett and Ella. They were in town for the week prior to her coming home, so she was fortunate to spend a couple of days with them before they left. Hanna enjoyed feeding her new little cousin. I took a week vacation myself to spend a little time with everyone. It was great to just relax and spend the time together as a family.

The last couple weeks have been so routine, that it’s been easy to forget everything we’re going through these days. Hanna’s doing great, running around like nothing phases her. Yesterday we had a her 3rd Birthday party. Grandma and Grandpa Ross returned for their next tour of duty, just in time for the party. Our neighbors, Phyllis, Ed and their kids, Austin and Aubrey, joined us to celebrate. Hanna had a wonderful time with her little friends. Hanna’s into Dora the Explorer these days, so needless to say, she now has almost every Dora thing there is.

Tomorrow, Amy and I meet with Dr. Falcone, Hanna’s surgeon. We’ll talk about the surgery scheduled for Thursday 5/18, to remove the primary tumor. We’re hoping for a very positive meeting tomorrow, since everything we’ve heard about the progress has been positive. This will be the first time we get to hear the surgeon’s expectations.

So on Thursday Hanna will get re-admitted to the Hospital for the surgery. We are asking everyone of you to keep her in your thoughts and prayers this week. We’re hoping that they can remove the entire tumor without any complications. After the surgery Hanna will likely be in the hospital for a week before she can go home again. Then later this month she’ll have another series of tests, for staging purposes. This is when they’ll determine if and when she’ll be ready for the consolidation phase of therapy (when she receives the most potent dose of therapy yet and the stem cell transplantation).

We’ll send you all another update once we get through the surgery to let you know how she’s doing. Take Care

4/28/2006

From Hope and Prayers Miracles are born

Some awesome news to report this week. As many of you know, Hanna was scheduled to have an MRI and CT Scan this week. The tests were intended get measurements of the tumors for staging purposes, basically to determine if she’s ready to move on to the Consolidation phase of the protocol, which involves higher doses of Chemo combined with Stem Cell transplantation. Another purpose was to determine if Hanna is ready for surgery to have the primary tumor removed, and whether the Dr’s see any difficulties with regards to removing the entire tumor.

SO we’re very pleased to report that Hanna has had wonderful progress from when she first was admitted. To start, the small tumor in her low back around her nerve roots is gone, hence the reduction in back pain we’ve seen. The tumor in her mid back along her spinal column is nearly gone. Originally, there were two noticeable tumors in her brain, one of which was sizable enough to have caused her seizures in her arm. Now, both tumors appear to have reduced significantly and have shown signs of necrosis (dead cells). Finally, the primary tumor attached to the adrenal gland above her left kidney, which was about the size of a softball to begin with, has now reduced about 75% in size, to about the size of a golf ball. Not only has the size reduced, but we’re also seeing the same necrosis in the tumor. The primary tumor also seems to have separated more from the existing organs and surrounding tissue, making it easier to remove. And finally we can actually see her left kidney, which had previously been covered by the original mass.

While we have yet to sit with the surgeon to discuss the upcoming surgery, rumors are that his initial reservations about being able to get 100% of the tumor removed has changed after seeing the scans. They’re becoming more confident that they will be able to get most, if not all, of the primary tumor. As for the consolidation phase thereafter, Hanna’s progress shows to have surpassed the guidelines in the study for her to move on to the next level, which requires tumor reduction of at least 50%, but that still needs to be officially determined by the national review board.

SO to say the least we’re excited to have more positive news in this long battle. We feel like we've been at war for months and yet this victory, while wonderful as it is, is only a small victory when you appreciate the magnitude of the battle. We still have a mountain to climb and two big challenges ahead of us between the surgery (currently scheduled for May 18th) and then Consolidation phase with Stem Cell transplantation. So keep the thoughts and prayer coming and please continue to spread the news to others. We know that we’re not alone in this battle and while the Dr’s here may be seen as miracle workers, there’s a greater power beyond them that you all are helping to harness and direct Hanna’s way.

As for Hanna, she’s going great. We're all a bit bored of this place as it’s been two weeks since she’s be admitted. No issues with the latest round of chemo med’s, so we’re just waiting for her cell counts to return before we can go back home. Actually today was the first positive sign of an ANC beginning to return, so with any luck we’ll get her home before the weekend. I guess that’s all we have to report right now. We’ll post another journal entry in about a week, once we have some more information about the upcoming surgery.

4/15/06

WISH IT SOUNDED BETTER

Well, we have an interesting and yet depressing week to report. It all started on Tuesday when Hanna when in for a couple of tests. The GFR test, which measures her kidney function, came back normal; however the Audiology test to measure her hearing was another story. As it turns out, Hanna has experienced some permanent hearing loss in both ears. The news came as an absolute shock to us as you would imagine, since she never expressed any noticeable signs to us. Well the loss is significant enough that she is going to need bilateral hearing aids. It seems that while she can hear normally in many of the mid-range tones, her loss is more severe in the lower and higher tones. The lower tones are very serious since much of the normal speaking tones exist there, and yet the higher tones will affect her ability to learn things like plurals, and tenses. These are just some examples of how wide spread this loss will effect her. Not to mention that without the hearing aides, she may have other issues with her speech development, or educational development. After we received the news, despite how successful of am exam she had, I was immediately planning to ask for a second opinion/test. We had scheduled a meeting with the Audiologist to discuss things further and then before I got a chance to ask for another test, we learned that the Dr’s had requested a second test on their own. They also wanted to ensure that the results were accurate. So on Wed we went in for anther exam and I even asked that a separate Audiologist give the exam to ensure that we eliminate any bias from the first test. I wish I could tell you that results from the second test were different, but they weren’t.

I’m sure at this point you’re wondering what may have caused this, and the answer could be as simple as Round 3. If you remember, Round 3 was a difficult round on many levels. First off, the med’s in round 3 and 5, are different than rounds 1, 2, 4 & 6. So, for Hanna it was the first time she received these med’s and with anything new there’s always the chance/risk that she many experience some of the side effects that these med have. And unfortunately one med, Cisplatin, is listed to have a side effect which is hearing loss. Now, no one would have expected this side effect to be as drastic as it was to Hanna. Usually the chances of having these side effects are low to begin with, but I guess we have a track record of beating the odds. So when we finished Round 3, before we knew anything about this hearing loss, the Dr’s we’re planning to reduce the med’s in Round 5 by 25% due to the delayed recovery she had after Round 3, but now that they have learned of the hearing loss they were considering reducing the med even further.

You see Hanna’s Doctor, Dr. Perentetis, happens to be the head of the Oncology Dept. at Children’s Hospital who is also a member of NANT (New Approaches to Neuroblastoma Therapy). NANT is a consortium of 14 Universities and Children Hospitals across the country that focus on strong research and treatment programs for neuroblastoma. On WED Dr. Perentetis had a conference call a few other NANT members to review Hanna’s case and discuss options for how they would further adjust the med rates for Round 5. The result was the choice to skip Round 5 altogether and move to Round 6. As bad as it sounds, the Dr’s feel that they don’t want to risk any further hearing loss from giving her even 50% of the Cisplatin. I’m obviously glad to hear that we’re not going to risk further hearing loss but our immediate concern in skipping a round is the effect of these med’s in fighting the cancer. So the Dr’s reassured us that in the battle against this cancer, the number of rounds are not as important as the over all exposure Hanna has to the med’s. And so if you can think back to all of the delays we’ve been having between rounds, many of those delays have been caused by Hanna’s difficultly in metabolizing the chemotherapy. Simply enough, her body is taking longer to kick the med out of her system, resulting in longer recovery times. But this also results in her having longer exposure to the med’s and that’s also good for fighting the cancer. So the number of rounds is not as important as exposure and so far, Hanna’s exposure has been pretty good. On Thursday Hanna was re-admitted to the hospital to start Round 6.

This is a difficult week to say the least, and now we are having to spend yet another Holiday in the hospital. Hanna’s Grandma and Grandpa Ross have gone home for a couple weeks break and at the same time we have some new visitors for the weekend. Hanna’s Papa Jack, and her Aunt Donna and Uncle Dave have come to visit for a few weeks along with Cousin Brett and our newest addition to the family, Cousin Ella. We’re going to have a pretty usual Holiday weekend mixed with a few trips back and forth to the Hospital.

Hanna had a great time at home, we are quite fortunate to be able to get home every couple of weeks. Many other kids aren’t so lucky. Well I was going to use Hanna’s friend Ben Ben as an example. He’s been in here since October and wouldn’t you figure that the day before we arrived, Ben Ben was allowed to go home. I’m not quite sure how long he’ll be home but it’s very likely that we won’t see him this Round. It’s pretty quiet around here this weekend. Not only are there not that many kids around, but the play rooms have very limited hours so it’s difficult finding things to do to pass the time. The gang is coming to visit tomorrow, as we have plans to spend Easter here with Hanna, we’ve already told the Easter Bunny where to find us.

So at this point we’re waiting to get past this round. In two weeks Hanna is scheduled for another set of tests and scans to determine the next course of action. If everything goes as planned she’ll finish recovering from Round 6 at home and then some time in mid-May, hopefully after her 3rd Birthday, she’ll have surgery to remove the primary tumor. At that point they’ll determine if she’ll be ready to proceed into the consolidation phase which consists of more aggressive chemotherapy and stem cell transplant. If not, she may have to try some other things like some different medications or possibly even some radiation therapy. Whatever the case, we’re going to fight hard just like we’ve been fighting the entire time, with the thoughts and prayers of our friends and family with us.

See the below links to view Journal Entries from 1/29/06 to 4/9/06 and also 1/1/06 to 1/21/06

Journal Entries 1_29_06 to 4_9_06

Journal Entries 1_1_06 to 1_21_06

12/31/05
Vomiting continued all throughout the night. Morning Labs showed signs of slight pancreatitus (inflammation of her pancreas). The DR’s ordered a CT of her Belly in order to get a better picture of what’s going on with her. The results were slight obstructions in her bowels, causing her belly to not properly digest, causing the back up and vomiting. This could cause a serious and life threatening issue if it continues to swell. Therefore, they decided to pull the NG feeding tube and placed a NG suction tube into her belly to help decrease and relieve her bowels until her white counts come back and she is able to fight this infection on her own. Today marks 10 days that her counts have been at zero. They say the average is 7-10 days. Well we can only hope and pray for a little positive news come the New Year.

12/30/05
The good news today is the recent blood cultures show negative for the infections, however Hanna seems to still be battling some other issue. Her vomiting has certainly increased during the day today. It’s becoming a bit concerning since she’s been NPO(no food or water by mouth). for over 24 hours and her NG feeds have been stopped for 3 days now. A PICC line was placed today installed. It’s similar to a central line but positioned in her left arm instead of her chest. Hanna was just not herself the whole day. She didn’t want to get out of bed, was very soft spoken, tired and weak from the vomiting and the two sedations from yesterday.

12/29/05
Well the last few days have had it ups and downs. Hanna continues to show awesome improvement in walking and functioning with her right arm. I swear she almost ran a few steps. And in the PT clinic she actually climbed a few stairs. By Thursday they ordered an MRI of her total spine, and the results were very positive. The lesion in her back along her spinal cord was almost completely reduced. It was the first visual improvement we received to-date. Of course with any good news there always seems to be some bad news. We also found out that Hanna has positive blood cultures for up to 3 different strains of infections. Therefore we needed to take her to the OR to have the central line removed, since that was the likely source of the infections.

12/25/05
Merry Christmas
Hanna is showing some good signs of improvements in her walking and use of her right arm. We’ve started going to Physical and Occupational therapy during the last few days to try to work on the use of her right arm and well as her walking. We think it been a healthy change for her to get off the floor and try a new environment, new toys also. Grandma, Grandpa and Loryn came to visit today. Hanna seemed very happy to see them, although she didn’t want much interaction. The visit was nice, especially for Grandma and Grandpa who have been hanging from phone call to phone call waiting for updates. And also for Loryn who constantly points at pictures of Hanna around the house, she finally got another chance to see her big sister. The doctors noticed an increase in the size of her liver, most likely due to the steroids. Liver function is normal so the size will likely go down with the steroid reduction. We noticed in the last few days that she had been vomiting a little more than usual; we think some of the reason may be related to the increased levels of her NG feeds.

12/22/05
During the last two days Hanna has continued to want to get out of bed and walk and go to the toy room to play. However we’ve started to see her struggle with her walking, mainly her right leg showing signs of fatigue. Also, Hanna seems a bit more lethargic and agitated, constantly switch hands to walk, wanting to be carried and then wanting to walk. She also started to show initial signs of drooling, likely due to some type of irritation in her mouth or throat. After further evaluation of Hanna’s lethargy and her struggles with walking, our Dr. decided to order a stat head CT to take a look at the tumor in her brain. The CT showed an increased size of the tumor in her frontal lobe (motor cortex) however the increased size was due to edema, or bleeding. Good News/Bad News I guess. The good news is that this is showing early signs that the Chemo is doing something positive, Bad News is that this positive reaction in the tumors will cause bleeding and swelling which is likely causing the motor skill issues as well as the pain in her back. To help with managing the swelling, steroids have been added to her daily med’s. The laxative “Go Lightly” seems to be working well, I think she cleaned out her whole colon in the last days. She continues to receive blood and platelet transfusions every few days as her blood counts continue to drop. Today is the first day that her white blood counts hit zero, now we wait for her to rebound. Auntie Donna and Papa Jack got a chance to visit. Again, Hanna is not too welcoming of guests, but non-the-less it’s nice to have family around.

12/18/05
The last two days were painful days. Hanna struggled very much with pain in her back and we struggled with the pain team as they worked through many different options. We started with a Morphine PCA pump, and then switched to Fentenyal. Then after 3 hours they came to the conclusion that the pain was most likely nerve related, and was being caused by the lesions around the nerve root in her lower back. So, they switched to Methadone, which apparently is much better at managing nerve related pain. It was the right pain medication after all but unfortunately it took the rest of the day and night for the pain team to prescribe the correct level which would ultimately get her pain under control. Hanna also has not had a bowel movement since we brought her the hospital and the Dr’s were growing concerned with how bloated her belly was looking. So, they prescribed laxative called “Go lightly” to help her along. Hanna has also had blood and platelet transfusions during the last few days. Chemotherapy cycle 1 has ended this evening. After 3 days Hanna’s had minimal vomiting or obvious reactions to the drugs. Hanna continued to want to get up and walk, go to the toy room and we also found the kitchen. Apple Juice and chocolate pudding has quickly become her favorites. (Swiss Miss of course).On Friday- Loryn came to visit, Hanna was not so interested in having her little sister around, however you can tell that Loryn was happy to see her big sister., After a week apart it was nice to all be together as a family again, even if it was for only a ½ hour visit and under these circumstances.

12/15/05
Today was a little calmer for Hanna. Not much in the way of additional testing was planned with the exception of Neurology. Hanna has been having some slight seizures in her right arm, likely due to the lesion in her brain. She receives medicine (Kempra) to prevent the seizures. Neurology performed an EEG to measure her brain function which show a slight and temporary abnormality, but a further CT scan confirmed that her general brain function looked normal. We also battled a lot to achieve adequate pain management today. Despite all of this negative news, Hanna actually felt a little more normal. She actually got out of bed twice today. Walked the halls for about 45 minutes and played in the toy room for about an hour. Her favorite toy is this toy microwave oven. She loves to the put the toy food in the microwave and pushes the buttons. 7pm Chemotherapy cycle 1 has started.

12/14/05
Today Hanna was scheduled for several surgical procedures. The first and foremost was a biopsy of the primary tumor to get a more definite biology of the tumor. She also had a central line placed in her chest as well as a bone marrow biopsy. After surgery, Hanna had a MIBG nuclear medicine scan to further understand how far the cancer had spread through out her body. The results were not what we wanted to hear. The cancer was spread throughout here entire body, bones and bone marrow, including infected lymph nodes and additional lesions in her brain, along her spine and interwoven in the nerve roots of her spinal code. This spread now classifies this disease at stage IV Neuroblastoma. And as if this could not get any worse, the biology of the tumor came back from pathology which also verified that the cancer was MYNC amplified and Shimatta Unfavorable. Basically- we have a very tough and challenging road ahead of us.

12/13/05
During the last two day s Hanna under went many diagnostic tests to help identify the biology of the tumor. The various tests included: CT Scans, MRI, Ultrasound, echocardiogram, audiology exam and x-rays. The prognosis was almost definitive: Neuroblastoma: a common but very serious cancer found in children.

12/11/05
The scariest day of our life. Pain in Hanna’s back forced us to bring her to the Hospital. An X-Ray and Ultrasound found a tumor, the size of a tennis ball, by her left kidney!! Not knowing what and how serious a problem we found, Hanna was admitted for further testing